NR TIMES Issue 22 by aspectpublishing

NR TIMES NEURO REHAB TIMES

/22

Saving lives after stroke The zebrafish research changing the outlook after

RRP £9.99

brain haemorrhage

H E A D I N J U RY A N D SPORT - CHANGING THE FUTURE H ow t h e D ra ke Fo u n d a t i o n i s p i o n e e r i n g p l aye r s a fet y

N E X T- G E N DEMENTIA CARE H ow eve r yd ay h o u s e h o l d smart tech is empowering patients and families

NRT-2022

Uniting case management for another successful conference

WELCOME

Editor's note Changing and evolving to create an exciting future Being able to learn about, and write about, the constant innovations in neuro-rehab - to benefit the lives of those who need it most - is a true privilege. Every day, the NR Times team are amazed by the new discoveries we make of the new inventions which are changing the future, the research which underpins that, and the trailblazers who are making this happen. In this issue, we’re delighted to share some of these inspirational stories, of the tireless efforts being made to change outcomes for people on a global scale.

For our interactive digital edition visit

nrtimes.co.uk Send your stories and opinions to Deborah Johnson, Editor deborah@aspectpublishing.co.uk For advertising enquiries contact Gary Wilding, Head of sales gary@aspectpublishing.co.uk Also on the NR Times team: Andrew Mernin, Founder / MD andrew@aspectpublishing.co.uk Chloe Hayward, Sales Robert Dale, Digital marketing Sophie Dinsdale, Design Paul Newton, Operations and finance manager

NR Times is produced by Aspect Publishing Ltd. Registered company in England and Wales (number 10109188 / registered office: 11 Lansdowne Terrace, Newcastle upon Tyne, NE3 1HN)

We were delighted to interview James Drake, philanthropist and founder of the Drake Foundation, which is behind so much of the pioneering research - and truly shocking findings - which is forcing change to be made to protect rugby and football players. Our visit to the University of Manchester, to see first-hand the life-changing, world-leading research into haemorrhagic stroke, was truly inspiring; even more so that it was instigated by the family of Natalie Kate Moss, who lost her life aged only 26, but whose legacy is now helping to change futures for so many others. We also have Neil Russell, the outspoken chairman of PJ Care, a champion of care and those working within it; David Grey, founder of GG Care, who is helping to revolutionise dementia care based on the experiences of caring for his beloved ‘Gran Gran’; and groundbreaking work from charities Forward Assist and The Brain Charity to offer new levels of support to those who need them. Positive change leads to a positive future, and one in which NR Times is proud to play its role. And change is also happening for us, with our recently-revealed plans for an exciting digital future. From August, we will become a wholly online platform, with NR Times becoming a bi-monthly digital magazine, which offers more opportunities to share inspiring stories, more exclusive content, more global reach than ever before, and more insight into our audience and what they want to read. This is a huge step for us, which comes after careful consultation, and one which has been warmly welcomed by our valued partners and colleagues from across neuro-rehab. Keen to be as accessible as possible, to embrace sustainability and to be a platform to represent such a dynamic and thriving global sector, we are very excited about the future. We look forward to sharing our digital vision with you and to working with you to create the future of our new magazine.

Collaborative content Sponsored features are created in partnership with our sector partners whose support ensures we can continue serving our readership.

Deborah Johnson deborah@aspectpublishing.co.uk

company/nrtimes @editorNRTimes

CONTENTS

COVER STORY BABICM CONFERENCE

Contents

learn more about this year's must-attend case management event 0 8 TA L K I N G T O C H I L D R E N how to discuss your stroke or brain injury as a parent

14 SECURING BETTER SLEEP how to manage brain injury, sleep and Long COVID 16 TRAUMA REVEALED extent of military sexual assaul revealed in groundbreaking report

D R A K E F O U N D AT I O N James Drake's mission to make change in head injury and sport 28 MOTUSACADEMY LAUNCHES advancing rehab and assistive tech globally

CHANGING THE FUTURE

1 8 P A R E N TA L S U P P O R T pioneering project increases help for mothers of babies with brain injury

world-leading research changes outlook for haemorrgic stroke

2 0 N R O L E X PA N S I O N programme now comprises in-person and remote neuro-rehab

60 WIDENING ACCESS how Askham Rehab's resources are now available to outpatients

66 TRAUMA FOCUS why trauma should be at the heart of neuro-rehab 68 EXCEEDING E X P E C TAT I O N S how effective rehabilitation can lead to life-changing outcomes 72 HR AND CARE how effective HR and employment is crucial 7 6 M E N TA L C A P A C I T Y A C T what does it mean and how can it support people?

CONTENTS

94 78 RECRUITING AND DEVELOPING how to build a stellar team in healthcare

9 0 M E N TA L H E A LT H how it impacts the patient, family and care provider

SPEAKING UP FOR CARE how Neil Russell is helping to change the profile of the sector 84 HUNTINGTON'S DISEASE supporting people and living well with HD 88 DEFYING THE ODDS how Ben continues to thrive after twice overcoming near-death illnesses

N E X T- G E N DEMENTIA CARE how GG Care is changing the future from personal experience 96 DEFINING OT and redefining client outcomes

100 LIFE AFTER STROKE ‘this was the best thing that happened to me’ 1 0 2 C O L L A B O R AT I V E WORKING leads to closer working and better outcomes 1 0 4 C O M PA S S I O N FOCUSED THERAPY supporting staff and patients alike

SPONSORED

BABICM ANNUAL CONFERENCE

DOWN BUT NOT OUT: The fighter still remains O v e r 3 8 0 p e o p l e a t t e n d e d B A B I C M ’s t w o - d ay 2022 annual conference in Nottingham.

Vicki Gilman, BABICM chair, welcomed delegates: “It’s wonderful to see so many of you here. We will hear from a wide range of experts about new science and practices that can impact our clients with brain injuries and complex medical conditions.” Vicki thanked the sponsors, in particular the headline sponsors Irwin Mitchell and RWK Goodman, and the exhibitors for their support. Lucy Nicol, partner at Irwin Mitchell, chaired day one, which focussed on sports-related Acquired Brain Injury (ABI). The speakers highlighted the growing concerns about the long-term effects of concussion and mild Traumatic Brain Injury (mTBI) in both contact and non-contact sports as a result of the increase in scientific literature and media coverage. Dr Michael Grey, reader in rehabilitation neuroscience, University of East Anglia, set the scene by discussing the history of sportsrelated ABI. In 1928 the pathologist Dr Harrison Martland first described the clinical syndrome of Chronic Traumatic Encephalopathy (CTE) in boxers and referred to it as being ‘punch drunk’. Michael said: “We’ve known about CTE for a long time in boxing and attention has now turned to other sports, including football.”

In 2015, the film ‘Concussion’ told the story of Dr Bennet Omalu, a forensic pathologist who challenged the USA National Football League because it was trying to suppress his research on CTE in professional football players. In 2017, researchers in Boston found CTE in 177 American football players across all levels of play (87 per cent) including 110 of 111 National Football League players

(99 per cent); the CTE severity was highest in semi-professional and professional players. Alzheimer’s disease (AD) and CTE both cause dementia and are characterised by a build-up of abnormal tau protein in the brain; there is no disease-modifying therapy for these tauopathies. Michael outlined the Screening Cognitive Outcomes after Repetitive head impact Exposure in Sport (SCORES) project currently underway at the University of East Anglia assessing neurodegeneration in people who were, or are, active in sport. The data is currently being analysed. New insights into the long-term symptoms following mTBI as a result of advances in neuroimaging, in particular magnetoencephalography (MEG), were discussed by Dr Steven Allder, consultant neurologist at Re:cognition Health. Steven said: “We still can’t agree why people get long-term symptoms in mTBI.” The long-term symptoms are subtle, very impactful, and chronic; individuals look normal but are struggling with everyday tasks, time management, their lives, and jobs. They struggle to be believed and get the support they need. Typically, they have a deterioration in symptoms when most people are in recovery and Steven said: “Capturing that dynamic reality is difficult”. However, new neuro-imaging techniques such as MEG, a functional brain imaging technique with high temporal resolution, has shown functional network connectivity changes in mTBI that cannot be seen with conventional anatomical imaging techniques. This is promising, but currently MEG is mostly limited to use in research. “Do your clients understand the short and long-term risks of taking part in sport?” asked Dr David Millar, clinical neuropsychologist, Cognisant.

SPONSORED

He discussed the risks for individuals with pre-existing conditions who are at greater risk of concussion and can take longer to recover from a sports-related ABI. There is a paucity of concussion research r elated to parasports, and the tools used to assess brain function following concussion in these individuals are not validated or applicable in some respects for a parasport population. David commented: “Sport is fantastic. It provides so many benefits, but you need to carefully consider the risks for your clients.” Dawn Astle, a pioneer in raising awareness of the long-term effects surrounding brain injury, spoke passionately about her father, Jeff Astle, who was initially diagnosed with AD. He had an outstanding footballing career at Notts County and West Bromwich Albion and was a member of Sir Alf Ramsey's 1970 World Cup squad. Dawn said: “The game which dad was so good at ultimately killed him.” Following Jeff’s death in 2002 at 59 years of age, the post-mortem findings of CTE raised serious concerns for the game of football. However, the football professional body ignored the findings and their implications. Dawn commented: “The union meant to support the players completely failed them.” The Jeff Astle Foundation was established in 2015 to raise awareness of brain injury in all forms of sport and to offer support to those affected. Litigation claiming negligence on behalf of the sporting professional bodies, particularly rugby and football, is looming and the complex issues were discussed by Samuel Cuthbert, barrister, 12 King’s Bench Walk Chambers. Sam said: “Those who regulate a sport are likely to be held responsible for its consequences. Once a governing body is aware of the risk, then a duty of care means they need to act to mitigate the foreseeable harms that could exist.” However, although the literature highlights the issues, there is no consensus linking concussion in contact sports with CTE and other neurological conditions and Sam said: “This doesn’t help the claims.” Maria Meek, partner at RWK Goodman, chaired day two, which looked at Care Quality Commission (CQC) registration for case managers, an update from the Institute of Registered Case Managers (IRCM), as well as new research and practices in brain injury and case management. “You will need to educate assessors about your role because they rarely receive case management applications,” said Andy Brown, registration adviser at the CQC.

For case managers there are two key questions: Will any regulated activity be provided? Will the case management provider carry on those regulated activities? If the answer is ‘yes’ then the case management provider will need to register with the CQC. Andy acknowledged that the system is not simple, was not developed for case managers, and discussed some of the ‘quirks’ regarding definitions which can be confusing for applicants. Angela Kerr, chair, IRCM updated delegates on the organisation’s progress towards holding a register of case managers and gaining the accreditation required from the Professional Standards Authority (PSA). Angela said: “Having a registration process and support with accredited training for case managers will provide reassurance for those who purchase or commission case management and help to protect the public who use case management. We aim to apply to the PSA for accreditation later this year.” Recent case management research was presented by students from the University of Plymouth and Dr Alyson Norman, Associate Professor of Psychology. The studies included how to define good outcomes for clients, a look at the impact of COVID-19 on case-managed rehabilitation and reducing the incidence of ABI suicidality. Dr Mark Holloway, senior brain injury case manager, Head First, discussed a recently published review on safeguarding and ABI that identified significant shortcomings in social work practice, education, and training. Mark said: “ABI knowledge is still lacking amongst the statutory services and is not integrated into assessments.” The focus on ABI training was reinforced by Professor Huw Williams, Associate Professor of Clinical Neuropsychology, University of Exeter, in his discussion on people with brain injury and crime. The evidence emphatically links ABI to offending but the lack of recognition and understanding within the Criminal Justice System about the ‘hidden’ disabilities of ABI results in barriers

to accessing justice and inappropriate use of standard criminal justice interventions that are ineffective in preventing ongoing offending. New management and assessment procedures, as well as advanced training programmes, are now being developed by the UK prison system. “An individual’s wellbeing and safety are crucial but associated with many contentious issues,” said Lorraine Currie, professional lead MCA at Shropshire Council who discussed the Liberty Protection Safeguards (LPS) that were introduced in the Mental Capacity (Amendment) Act (MCA) 2019 and will replace the Deprivation of Liberty Safeguards (DoLs). The proposed LPS has three assessments, greater involvement for families, includes 16- and 17-year-olds and domestic settings. It creates a new role for Clinical Commissioning Groups (soon to be Integrated Care Systems), and NHS Trusts in authorising arrangements; in Wales, the ‘Responsible Body’ will be the local health boards. There will also be a new specialist role of Approved Mental Capacity Professional. Lorraine said: “A ‘feeling’ of independence is important and all professionals should view the whole person with knowledge of the impact of the brain injury.” Jemma Morland, solicitor (property and affairs) and Eilish Ferry-Kennington, senior associate solicitor (health and welfare), EMG Solicitors, discussed several case studies to illustrate the many aspects of their work including the MCA, capacity assessments, unwise decisions, safeguarding and DoLs, Court of Protection (CoP) Welfare applications and family disputes. Case managers can observe the CoP in action online and Claire Martin and Gill Loomes Quinn discussed the Open Justice CoP Project, www. openjusticecourtofprotection.org. The project is independent of any public body or university and run on a voluntary basis. Details of hearings are provided in listings published in the CoP Daily Cause Lists and available after 4.30 pm on the day before the hearing. The BABICM Annual Conference in 2023 will take place in Coventry from the 6th-7th June. Contact secretary@babicm.org for more information.

N R news

How to talk to children about your stroke or brain injury Stroke survivor and GripAble ambassador Kate Allatt shares her insight and personal experience A parental stroke or brain injury can be a traumatic event for most young children and access to the right information and support is vital to help them cope. Having open and honest conversations about stroke, brain injury and loss is the first step, followed by signposting and guiding children towards healthy ways to manage their emotions. Stroke survivor and GripAble ambassador Kate Allatt draws on her personal experience of parenting young children whilst recovering from her stroke, and offers helpful advice and tips for talking to your children about your stroke or brain injury

I n m y f a m i l y ’s c a s e , I b e l i eve my s t r o ke c h a l l e n g e d m y c h i l d r e n’s ability to process emotion and, in truth, there were profound consequences to my maternal relationship with them

Effects of parental stroke or brain injury on children When I experienced my stroke, my children were at the tender ages of four, eight and ten and the event inevitably had a devastating impact on all of them in very different ways. We know that a child’s brain is the most under-developed organ in their body. As such, any serious trauma, such as the sudden illness of a parent or close relative, can cause physical changes to the structure of a child’s developing brain. In my family’s case, I believe my stroke challenged my children’s ability to process emotion and, in truth, there were profound consequences to my maternal relationship with them. This has been by far the hardest consequence of my stroke that I’ve had to deal with. Some children may choose to push away the pain and confusion they feel by shutting their parent out and limiting communication with them. Some may adopt unhealthy lifestyle choices or experience severe anxiety as a result of the event. Others may find it hard to form loving relationships themselves. More understanding and support are urgently needed to equip the children of stroke and brain injury survivors with the tools they need to cope with their trauma and help preserve parent and child relationships. There is information out there for parents of children who have experienced a stroke or brain injury, but support for young children after a parental stroke is limited and often sadly overlooked. Talking to children about stroke I know I’m not alone in struggling to cope with the aftershocks of my stroke as a parent. It is extremely challenging having to manage your own emotions, physical symptoms, and changes in your mental state on top of considering the feelings of those close to you, particularly children who may not be able to fully understand the changes in you and why things can’t continue as normal now you are home from hospital.

Here are some tips for approaching the topic of your stroke or brain injury with your children: Remain calm – this can be particularly challenging after a stroke or head injury, but it is important to keep your cool and reassure your child, as children naturally seek support from adults when traumatic events have occurred Pick a good time – aim to look for natural openings to have a discussion rather than sitting down for a formal conversation to help your child feel more at ease. Encourage family discussions that allow family members to share their emotions to show children it is ok to express their feelings about your stroke too Acknowledge their emotions – if a child admits to a worry or a concern, try not to dismiss it as it may come across as criticism. It is often enough to simply confirm what you are hearing and show you are listening and accept their feelings. Let your child know it is completely normal to experience anger, guilt and sadness and to express these in different ways Understand that children cope in different ways – there is no one ‘right’ way to cope with a major life event such as parental stroke or brain injury – some children may want to spend more time alone, others may turn to friends and relatives for support Look out for signs of trauma – children may not show their true emotions in the first few months following an event, but once the initial shock wears off, symptoms of anxiety and worry may begin to show Know when to seek professional help – if you are concerned about any of the behaviours your child is displaying, it is important to seek help from your GP or mental health professional as soon as possible Look after yourself – remember you are recovering from a serious condition and need time and support to help you get better. Discuss any concerns with friends and relatives and, if possible, lean on them for support and help at home.

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N R news

Oliver Zangwill Centre to close The Oliver Zangwill Centre, known nationally for its work in delivering neuro-rehabilitation, is to close, it has been confirmed. The announcement has been met with anger and devastation by charities and those the Cambridgeshire centre has supported over the years, with fears raised about what resources can fill the gap its closure will leave. The Oliver Zangwill Centre has supported people aged 16 to 64 who have nonprogressive brain injury and require cognitive rehabilitation since its opening in 1996, with patients coming from well beyond its Cambridgeshire and Peterborough CCG area. In that area alone, around 4,000 people are admitted to hospital each year with an acquired brain injury (ABI) diagnosis, although Cambridgeshire and Peterborough CCG claims referrals to the centre have decreased in recent years. In a consultation earlier in the year, involving charities including UKABIF and Headway – as well as local people, former patients, and those with professional and personal interest in neuro-rehab – many expressed their views as to why the Oliver Zangwill Centre is a ‘lifeline’ for so many and cannot be lost. However, sadly its closure has now been confirmed, with a recommendation made for it to take effect from June 30. The announcement has been met with frustration, particularly at a time when advances are being made on behalf of ABI survivors through the creation of the ABI Strategy. Chloe Hayward, executive director of UKABIF, told NR Times that confirmation of the closure is “devastating”. “There are so few of these specialist units, and the Oliver Zangwill Centre is right up there with the best of them. Many people will suffer as a consequence of its loss,” she said. “Specialist neuro-rehab gives people the leg-up to get back to the best of their ability, and by removing this centre that chance is diminished. “I worry that because decision making is going to be devolved, we will see more of this. When all decisions are taken on a regional basis, I fear that we will see more of this and the regions not providing what is needed. It’s a very big concern.

Specialist neuro-rehab gives people the leg-up to get back to the best of their a b i l i t y, a n d b y removing this centre that chance is diminished “While Chris Bryant and Gillian Keegan are spearheading national policy, we also need to consider what is happening regionally, and that must align for it to have the positive effect we need.” Headway said it believes a key priority for the ABI Strategy should be the equitable access to specialist neurological rehabilitation and support services – a concept completely undermined by the decision to close the Oliver Zangwill Centre. “At a time when the

government is in the process of putting together a ground-breaking pan-departmental ABI Strategy to better support people living with an acquired brain injury, we should be looking at creating more of these centres of excellence, not closing them,” said chief executive Peter McCabe. “Each year, around 350,000 people are admitted to UK hospitals with an acquired brain injury. For many patients, early access to specialist neurological rehabilitation will significantly increase their chances of making a meaningful recovery. “And yet currently access to specialist care such as that provided by the respected Oliver Zangwill Centre varies significantly across the country. “Rather than improve lives, ultimately the cost of this move will largely be paid by brain injury survivors and families unable to get the help and support they deserve and need. “Whilst hugely disappointed, this strengthens our resolve to make sure the ABI Strategy is strong enough and robust enough, so that every survivor has the best chance at a meaningful and fulfilled life after brain injury.”

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Specialist brain injury rehabilitation support Voyage Care is a sector-leading provider of specialist care for adults with brain injuries. We work with multi-disciplinary teams to rehabilitate and provide on-going care and support at our 19 brain injury services across the UK. As part of a tailored support pathway, we can provide support in the community, in rehabilitation services, transitional supported living properties and in people’s own homes.

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As the first brain injury service in the UK to achieve an outstanding rating from CQC, Voyage Care continues to invest and further develop its services to ensure it remains a leader in brain injury rehabilitation, care and support.

Voyage Care operates both registered care homes and community services nationally for people with learning and physical disabilities, with brain injury rehabilitation (BIR) being a key part of its portfolio. With ongoing investment in the creation of new units - and the expansion or full refurbishment of existing sites - Voyage Care works closely with Commissioners and local authorities around the country to respond to the ever-increasing need for BIR support on both a residential and community basis. And its focus on enabling its service users to regain independence and achieving goals is something it believes sets it apart. For Voyage Care, the plan for discharge begins even before a person has entered their service. With specialist placement managers who work with medical professionals and the multidisciplinary team (MDT) from the earliest days and throughout the journey, they work tirelessly for and with every client to achieve the best possible outcomes. “When we assess somebody for our rehab service, we're assessing them for discharge, effectively,” says Alan Marshall, managing director of the Central West region for Voyage Care. “They'll probably be with us for around 18 months, maybe two years - or in our slow-stream service, that could be a lot longer - but we're assessing their ability to rehab, and planning for whatever independence looks like for them. “We’ll draw a picture of what that person wants to achieve, based on our assessments and their condition, and we'll overlay that with their personal goals. “Their pathway to rehab might not always be

as straight as it could be for others, but we’ll always be there to support them at every stage. And we get some very good results from our approach.” The strong outcomes are many, but one that springs to mind for Alan is the first resident to be discharged from Voyage Care’s new flagship brain injury rehab site, Devonshire House in Manchester, after its opening last year. This man secured discharge after only six months, with the bespoke pathway and rehabilitation he received changing his life in a short period of time. “When you think of when we opened, and the challenges we’ve faced with COVID and staffing, the fact he was able to rehab within six months and go back to his family was a real success,” says Alan, who has worked in health and social care since 1990. “While that is a new opening, the way the team work together already is fantastic. But that’s what we have across the whole group, that commitment, the levels of work, the brilliant results they’re helping people to achieve. “I'm always humbled when I go into a service to see just how well our staff know the people, there’s a real sense that they’re advocating for them, and that’s great to see.” To continue to deliver these life-changing outcomes for clients, Voyage Care continues to invest in its facilities and in-house training. The development of its facilities is significant and ongoing. In addition to Devonshire House, Voyage Care has recently opened a new brain injury rehabilitation service in the West Midlands, with 24-bed purpose-built units planned for the Wirral and Glasgow within the near future.

Another service in Leeds, already one of the newest in Voyage Care’s portfolio, is set to be expanded further, and others in the group are seeing extensive refurbishments. “There's a lot of investment, which I think shows the work we do and the results we get, but also our model, which is very niche in the market,” says Alan. “A lot of other brain injury services tend to go down the healthcare model with a lot of fixed costs, but we like to personalise everything. The costs for Person A will probably differ from Person B based on their needs, and clinical interventions are funded on a sessional basis, so we can be flexible on prices. “We work very closely with commissioners and this works very well.” And for the continued development within Voyage Care’s management team, they work with clinical psychologist Dr Andrew Worthington on learning and best practice. “Through this learning and development programme, which has ten modules, we are coming together as a team of managers and deputies to deal with practical problems people face, and talk about how to manage the situation and work through the process together,” says Alan. “It’s very important in our ongoing development, and shows how we are always learning and wanting to do more, to do the very best for the people in our service. “I'm always being challenged, and I think my management team are always being challenged - quite rightly - about how we can make things better, how can we do things better? And that's really positive that we can work like that, and helps us continue to achieve what we do.”

N R news

Managing sleep in Long COVID Dr David Lee of Sleep Unlimited looks at techniques to help those struggling to recover sleeping patterns Experiencing sleeping difficulties is very common after sustaining a brain injury, with at least 50 per cent of people who have had a brain injury reporting disturbed sleep as a result of the trauma they have sustained. The situation is often very complex, as described below in figure one, there can be multiple sources of sleep disturbances in this group of clients, which can originate from a range of experiences over a broad time-course. Figure One. Factors which can impact on the sleep of someone who has had a brain injury. When we are asked to treat a sleep problem for a client who has had a brain injury, then a detailed assessment is essential. One which probes for all the factors shown in Figure One above, and one that, preferably, uses objective outcome measurements such as actigraphy. Firstly, and most importantly is the quality of sleep that the client experienced before their injury. The actual location of the injury, and areas of the brain which have been specifically damaged may also have significant effects on a client’s sleep, as are current and previous medication prescription, psychosocial lifestyle factors (such as activities of daily living, alcohol, nicotine, and caffeine consumption), and the presence of pain and mood disturbances (both of which are very commonly experienced by people who have had such injuries). All of these factors have been important to consider for people living with a brain injury, but with the recent advance of the Coronavirus variants across the globe the impact of symptoms of COVID-19 in the short-term and Long COVID in the medium-term have brought additional challenges for the sleep of this group of clients. Fatigue is a very common symptom of Long COVID, and this can often lead to people sleeping for long periods, so-called “hypersomnia.” Paradoxically, common symptoms of hypersomnia are feelings of tiredness and fatigue. As a result, some of the fatigue experienced by people living with Long COVID may be driven by their oversleeping (hypersomnia) as much as be the condition itself. There is a potentially useful intervention

which may be of significant benefit to those experiencing these negative symptoms, and so potentially promote a faster and more full recovery.

Exposure to light should be: • Natural light, i.e., daylight, outside and not through a glass window for example. • Best in the morning or early afternoon as light at this time of day is in the best And that is: exposure to natural daylight. frequency range for promoting the production There are three potential benefits of this: of melatonin. 1/ Exposure to natural daylight during the • For at least one hour, but as much as possible day promotes the production of melatonin beyond this will likely add additional benefit. in the pineal gland within our brains. Melatonin • This intervention is free of charge and aids with sleep onset and sleep maintenance. easily accessible. 2/ With an excess of melatonin, the body can This intervention only requires some simple break this down and convert it into serotonin. lifestyle changes (not sleeping for too long and Serotonergic depletion is associated with going out of doors more often) and as a result depression, so if we have excess amounts of should be easy for most people to engage and melatonin in our systems due to an additional comply with. exposure to natural daylight, we can convert Critically important in the design and this into serotonin, and this can lead to delivery of effective interventions for this client improvements in mood. group is a sensitive assessment process 3/ Being exposed to natural daylight also alongside close liaison with the promotes the production of Vitamin D in client, their family and other carers, as well our skin which has proven immune boosting as with other treating professionals within benefits, but you do need to let your skin the client’s multi-disciplinary team. see the sun and not be too covered up. Being “on the same page” and working in a client-centred way is essential to ensure compliance and so deliver effective and durable outcomes for the client and their family. Excellent results can be achieved with regard to improving sleep in this group of vulnerable clients Fa t i g u e i s a when these factors are taken into consideration. If you, your family members, colleagues or very common friends are struggling with symptoms of symptom of Long Long COVID then trying this for a few weeks C OV I D, a n d t h i s should show benefits for many. If you are still struggling with your sleep, mood can often lead to and /or levels of fatigue after trying this for a few people sleeping weeks, then it may mean that you require some more help. In which case, please do contact our for long periods, offices for an informal and confidential so-called discussion about additional options for further “ h y p e r s o m n i a ”. treatment or onward referral as may be required. Dr David Lee BSc PhD CertEd AFBPsS CPsychol CSci is clinical director at Sleep Unlimited Ltd

N R news

Trauma of LGBTQ+ sexual abuse in military revealed Support and research must be made a priority in tackling the “hidden and underreported” issue of sexual abuse of LGBTQ+ service personnel in the Armed Forces, a groundbreaking new report has concluded. The Exit Wounds report has identified the scale of LGBTQ+ survivors in the Armed Forces and the trauma that they faced during their time in service, and continue to face in living their lives outside of the military as a result of Military Sexual Assault (MSA). Through research with survivors, veterans’ support charity Forward Assist has shone new light on the psychological trauma from experiences at the hands of colleagues in the military – an institution where, prior to 2000, serving members of the LGBT community could be expelled on the basis of their sexuality. And through gathering the experiences of veterans from the LGBTQ+ community, Forward Assist – and its women veteranspecific sister organisation Salute Her UK – have recommended a raft of changes to help improve the reality for current and future members of the Armed Forces. They include: • the UK Office for Veterans Affairs must bring together veterans who are ‘experts through experience’ with organisational leaders and researchers to address key issues facing the LGBTQ+ community • The Government must initiate an independent and robust reporting system for survivors who wish to report historic abuse • Veterans must be supported by properly qualified trauma informed therapists and experienced support workers to deliver the help they need • The UK should follow the lead of the US Department for Veterans Affairs and publish LGBTQ+-specific veteran healthcare information • Large-scale academic research must be commissioned to examine the true long-term impact of MSA and MST on LGBTQ+ veterans • More specialist resources be made available in the NHS to support LGBTQ+ veterans who have experienced sexual assault and trauma. Pioneering Forward Assist – which works

nationally from its North Tyneside base – has a strong record in supporting veterans directly while also campaigning for institutional change, and is leading from the front on this issue by introducing a role within its Family First support team for an LGBTQ+ veteran care co-ordinator. “Sadly, research into the lived experience of LGBTQ+ individuals affected by Military Sexual Assault and associated trauma is currently non existent in the UK,” said former Royal Marine and qualified social worker Tony Wright and mental health therapist Paula Edwards, who lead Forward Assist and Salute Her UK. “We know MST is associated with poor mental health, interpersonal and physical relationship difficulties and appears to be more influential in the development of PTSD. “What is particularly traumatic for LGBTQ+ veterans is that not only were they abused (often targeted because of their sexuality) but blackmailed not to report it, and if they did, were dishonourably discharged.” The research gathered the experiences of 20 LGBTQ+ survivors of Military Sexual Assault (MSA), aged between 43 and 67, who had been part of the Army, Navy and RAF. The distressing experiences of many centred around rape or assault to ‘make them straight’, with many living in fear of the consequences of them being ‘exposed’ for being who they are. “If there was even a whiff of someone being gay, SIB would plant officers in the unit. That person would try it on with you and if you responded, you would be arrested and kicked out,” said one. “I had to hide who I was for such a long time.

I still conceal who I am. The consequence of my sexuality is that I don’t know how I am anymore,” said a veteran. “I got a fellow soldier to break my wrist so I could go to hospital and away from it all. I couldn’t cope,” added another. Many spoke of resultant psychological health issues including OCD, self-harming and bulimia, with many turning to alcohol and substance abuse. “I have PTSD, anxiety and depression. I rarely leave the house. I struggle to look after myself and have no energy for anything,” said one veteran. Another heartbreaking testimony read: “I live in supported accommodation. I feel suicidal every day and want to die. I have tried to hang myself quite a few times. I lost everything, how do you come back from that? The constant embarrassment and shame of letting my family down, and myself.” Tony and Paula, who support thousands of veterans both in-person and online, said MST is a hugely prevalent issue within the veteran community in general, but specific intervention is needed for the LGBTQ+ ‘hidden population’. “The unique aspects of sexual assault in a military context and the bizarre expectation that the victim must continue to work and/or live in close proximity to the perpetrator has a unique influence on how trauma and the inevitable fundamental feelings of betrayal manifest themselves during and after military service,” they said. “Team Forward Assist and Salute Her UK are committed to offering person-centred, needsled, clinical support services to traumatised veterans with LGBTQ+ and related identities.”

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A first-of-its-kind initiative will see new and expectant mothers given vital new levels of support from the point their baby is diagnosed with a neurological condition, genetic illness or brain injury. Two specialist outreach workers from The Brain Charity are now based at Liverpool Women’s NHS Foundation Trust - the only specialist Trust of its kind in the country - and offer practical and emotional support to new parents and families who need to come to terms with a diagnosis for their child. Maria Wilson and Sue Blackburn will work alongside mothers and wider families from the point of diagnosis, whether that be pre- or post-birth, and help them to adapt to new parenthood with the added challenges their child’s condition or illness may bring. The support also extends to parents who themselves live with a neurological illness or brain injury, and may need additional help in looking after their new arrival. The project is the first in the UK to deliver support for a range of neurological conditions to pregnant ladies and new mothers in hospital, and builds further on The Brain Charity’s

inpatient provision following the success of its outreach workers being based in The Walton Centre NHS Foundation Trust. “We support mothers and parents with whatever their situation is; sometimes they already know their child will be born with a neurological or genetic condition, or sometimes the diagnosis won’t be known until after birth, or the baby might sustain a brain injury,” says Maria. “We know there are gaps in having the earlystage support there as soon as parents get the diagnosis, and through this project, we’re helping to fill those. “Liverpool Women’s have been brilliant to work with in getting this started, and it adds to the overall care they can give new parents through being able to direct us to those who need our specialist support.” Through the project, Maria and Sue will deliver support in a wide range of ways, whether that is providing a listening ear, assisting with access to benefits and welfare, or signposting to organisations who can help, including the many additional services The Brain Charity offers, such as advocacy, counselling and benefits support.

We k n o w t h e r e a r e gaps in having the earlystage support there as soon as parents get the diagnosis, and through t h i s p r o j e c t , w e ’r e helping to fill those

“It’s important we work very closely with the multi-disciplinary team (MDT) to ensure families are supported in every way possible, it’s very holistic,” says Maria. “I always start by asking a family: ‘What do you need?’ We want to help fill their unmet needs and make their lives easier. They are thrown into this situation and we want to do all we can to help them adapt. “It could be something as simple as making phone calls to loved ones, or advising them on some financial options. For example, do they have critical illness cover on their mortgage or any insurance? Can they access any benevolent funds? What benefits are they entitled to? “We’ll look at what services we can link them in to and who can give them the support they need at that time. “Equally, you can never underestimate the importance of emotional support. Often, just being there with a listening ear, giving them the time to open up and chat, is really vital. It can feel like the rug has been pulled from under them, so sometimes just talking can be a really important part of the process. “This can be a very difficult and traumatic time for a family, which can start with the process of going through genetic tests before birth, or in having to deal with the enormity of an unexpected diagnosis afterwards but we’ll do everything we can to get them through.” Maria and Sue continue to work with families even post-discharge from Liverpool Women’s, whether that is to another hospital or they return home. “For a lot of families, it’s at the point they return home to the reality that their family has changed, and the support can often be needed then more than ever,” says Maria. “After being in a clinical setting and then going home, it can be a very scary time, but we’ll be there to make sure statutory services are working as they should be and ensure the early help is in place for them. “The Brain Charity’s support continues long after discharge, and we can signpost to our other services to make sure we’re helping the whole family - whether it’s one of the parents who wants to re-train to do a different job as they are having to adapt through their circumstances, or if Grandma wants to come along to one of our support groups to meet others in her position, we can make sure they’re supported at every stage.”

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The charity founded by Emilia Clarke to support fellow brain injury and stroke survivors, SameYou, has secured funding to expand its pioneering NROL programme to comprise remote and in-person rehabilitation. SameYou launched Neuro Rehabilitation Online (NROL) during the pandemic as a means for people recovering from acquired brain injury to continue their therapies when in-person support was not possible. In an audit of its work, NROL – created by SameYou in partnership with University College London (UCL) and University College London Hospitals NHS Foundation Trust (UCLH) – was found to have “significantly improved” on the defined outcome measures. Now, through securing £219,859 in funding from The National Lottery Community Fund, NROL is able to expand beyond its original scope to incorporate a ‘hybrid’ model of multidisciplinary telerehabilitation and face-to-face rehab, both in group and one-to-one settings. The NROL service it has developed with with East Lancashire Hospitals NHS Trust (ELHT) and the University of Central Lancashire (UCLan), will now be rolled out through Lancashire and South Cumbria. The county-wide scheme will involve physiotherapists, occupational therapists, psychologists, speech and language therapists and medical and assistant practitioners from ELHT, Lancashire and South Cumbria NHS Foundation Trust, University Hospitals of Morecambe Bay NHS Foundation Trust and Blackpool Teaching Hospitals NHS Foundation Trust. The expansion steps up SameYou’s commitment to changing access to neurorehabilitation for brain injury survivors even further, inspired by Game of Thrones actor Emilia’s experience of surviving two brain haemorrhages and discovering the lack

of focus on support for people in such situations. Jenny Clarke, co-founder and CEO of SameYou, said: “The provision of neurorehabilitation after brain injury doesn’t meet the urgent need. “Group telerehab has been proven to add capacity and reach people who are underserved. “The expansion of this scheme would not have been possible without the National Lottery funding. “This grant means that we can continue our work with UCLan and ELHT to support more people and help them take back their places in their families, communities and society after a brain injury.

Therapy services are continuing the process of restoration postC OV I D a n d t h e r e i s a need to understand the learning from online rehabilitation to determine its place in the future “This will make a big difference to people’s lives.” Louise Connell, NROL project lead and UCLan Professor of Allied Health Neurorehabilitation and Stroke, said: “I’m absolutely delighted the

scheme is being rolled out to help more people who’ve had a stroke or have other neurological conditions throughout the region. “Therapy services are continuing the process of restoration post-COVID and there is a need to understand the learning from online rehabilitation to determine its place in the future. “It’s anticipated this will be a hybrid model of face-to-face and virtual input which will allow a greater intensity of therapy to be delivered to more people and in a more convenient way.” One of those who attended the pilot NROL programme was Abdul Malik, who had a brain haemorrhage and seizure at his home in Burnley in May last year. Initially he was unable to speak for two-anda-half weeks and was paralysed down the right-hand side of his body, meaning he could no longer hold his baby son Eesa, who arrived in December 2020. The 37-year-old said: “I attended two NROL sessions a week to help with my upper limb movement and before I started, I struggled to move my arm at all but by the end of the programme I was able to hold my arm across my body, meaning I could hold my son again. “NROL was a lifeline because I was seeing familiar faces twice a week online at a time when COVID-19 was stopping me from seeing anybody outside of my house. “The physios and occupational therapists were very helpful and made us all feel comfortable. “The patients were experiencing the same physical movement problems so our sessions allowed us to talk about our issues and we became friends too.”

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INTERVIEW

James Dra ke

Making change happen The work of the Drake Foundation has been crucial in pioneering research to reveal links between concussion and head impacts in sport and neurodegenerative disease, helping to change the future for athletes and society at large.

INTERVIEW

D e b o r a h J o h n s o n s p e a k s t o i t s f o u n d e r, p h i l a n t h r o p i s t J a m e s D ra ke , a b o u t t h e o r i g i n s o f the Foundation, its achievements to date, what more must be done and its ongoing efforts to push for change Through a determination to make sport safer for players of all levels, and to broaden understanding of neurodegenerative disease in society as a whole, James Drake is truly making change happen. With his Drake Foundation pioneering eight groundbreaking studies around concussion and head injury, mostly in rugby and football, all of which are helping to gather more evidence around the impact of repetitive head trauma, the onus has been firmly placed on the need for greater player safety. And as a result of such new research, change is indeed beginning to happen, with both the RFU and FA introducing guidance around contact training and high force heading respectively, and clinical practice in rugby changing as a direct result of Drake Foundation research. With the significant gains made around knowledge of neuroscience in sport, the not-forprofit Foundation - established by philanthropist James Drake in 2014 - is now tackling another area in which greater research is needed through its pioneering Drake Intimate Partner Violence (IPV) Study. More than £2.2million has been invested to date in funding the research which is helping to revolutionise knowledge of brain health, bringing together the brightest minds in science and enabling collaboration with sports clubs and governing bodies to help break new ground around head injury and its long-term impact. Continuing to pioneer the research and gather the evidence to inform thinking in policy and education and make change is, says James, the ethos of what he sought to create. “As a Foundation, we see our role as being a catalyst in areas of science and medicine that are under-researched and under-funded,” James tells NR Times. “Once we connected a contact sport with neuroscience, that could never be reversed. It would catalyse from there onwards forever. “We want to accelerate conversation and funding around head injury in sport, and now we want to do it on a wider front.”

The origins o f t h e D ra ke Foundation As a keen rugby player, who grew up during Wales’ ‘golden era’ of rugby and himself played as a schoolboy for Cardiff, James confesses the sport is a “fundamental” part of his life. However, after rugby became professional in 1995, the change in the physical demands of the sport, yet lack of change in safety protocols, became a concern for James. “It seemed to me that the impacts were becoming more severe, the players were heavier, they were fitter, stronger, leading to bigger impacts,” he says. “I really felt that safety standards might be travelling in the wrong direction. And I wasn't the first. Barry O’Driscoll resigned from World Rugby in 2011 because of this issue. And so I felt there must be something there. “If someone said to me, before the watershed in 1995, was rugby a relatively safe game? Safety is always relative, so I would say yes, it was relatively safe. But if I was asked is elite rugby safe now? I’d have to say no, I don’t think it is.” With a background of publishing scientific research and information through his publishing house, Future Science Group, he believed more must be done to connect

sport with neuroscience to gain a better understanding of what was happening to players’ brains during contact in sport. “I wanted to not only fund, but also pioneer studies of brain health, to gather evidence of what was happening in the brains of players over time, with the idea that this evidence could inform sporting protocols, which were not very good, to say the least,” says James, who speaks proudly of how the Drake Foundation is named in tribute to his adoptive father who gave him his name. “We want sport to be enjoyed safely by everyone. And this evidence can also inform our understanding of neurodegenerative diseases at a wider societal level. “I wanted to start the conversation about these vital issues in sport and society.” 2014 became the year James decided to take action, following ongoing concerns around safety in rugby, the huge controversy around Tottenham Hotspur goalkeeper Hugo Lloris remaining on the pitch after losing consciousness - “I was just horrified by that,” says James - and the coincidence of a Premiership rugby team relocating into the area where James lived. “I'm a great believer in pointers in life,” he says. “You get these pointers, which are seemingly unrelated, but they're not unrelated. They're telling you something, and the fact that this club came to where I lived said to me, ‘You’ve got to do this, mate’.”

I wanted to not only fund, but also pioneer studies of brain health, to gather evidence of what was happening in the brains of players over time, with the idea that this evidence could inform sporting protocols, which were not very good, to say the least 23

INTERVIEW

The research

The need for research The concerns around safety in sport, alongside the rise of neurodegenerative disease in society as a whole, made James realise the need for research to help better understand this, and what could be done to protect against exposure to greater risk. “This is a major problem for society as a whole, and I felt that there was a real gap in understanding what was happening in the brain long before diseases like Alzheimer's are outwardly visible,” he says. “Sports participants are one of the few groups where data can be gathered. The Framingham heart study in Massachusetts in the 80s advanced our treatment of heart disease enormously, but that sort of study for the brain just isn't possible. “So we needed to learn more about what is happening in the brain, and that can only come through research.” While elite sport had undoubted capability in medical matters, the lack of knowledge in the field of neuroscience - particularly in sports like rugby and football, where head impacts are routine - was a big concern for James. “The public would perceive that sport would know all about neuroscience. But of course, it's not the case,” he says. “World leaders in sports medicine knew all about typical sporting medical matters, but they knew very, very little about neuroscience.

“And I think, on reflection, my greatest contribution is to have linked neuroscience research with sport. Once we made that connection, they could never go back, because that ball starts rolling.” The use and understanding of ‘concussion’ was also something that was not awarded the seriousness it deserved, believed James. “I felt that the word concussion was oversimplifying it - somebody's ‘concussed’ and then a few days later, they seem to recover, although you don't know what's happening in their brain now or in the future. It also doesn’t account for all the sub-concussive blows that players are sustaining and which could be affecting their brain health,” he says. “I felt that in several sports, but particularly in rugby, you're getting multiple sub-concussions, and logic told me we have to prove that. We need evidence so you know that brain injuries have happened. We had examples of people with serious – likely sports-related – brain problems who had never been diagnosed with a concussion. “And from a common sense standpoint, the brain needs better protection and prevention of impacts. People think wearing a helmet protects your brain - it protects your skull from being shattered, but it doesn't protect your brain, which is that jelly inside it. That just isn’t acceptable.”

Since its creation, the Drake Foundation has funded eight groundbreaking research, including six projects in rugby and football, which have put concussion and head injury firmly on the agenda of sports governing bodies and have already helped to effect change. Two of the most prominent - the Drake Rugby Biomarker Study and the BRAIN study - have both helped to show the need for urgent action to protect rugby players, with the former highlighting changes in brain structure that can be seen in elite athletes and BRAIN raising concerns around safety standards post-professionalisation. The Drake Rugby Biomarker Study was the Foundation’s first, launching in 2015, with blood, saliva and urine samples being analysed in an effort to uncover potential biomarkers of concussion injuries. The ongoing project continues to evolve, under the leadership of world-leading neuroscience experts including Professor Sir John Hardy, and more recently has used advanced neuroimaging to break even more ground. Linking up with a professional rugby club in 2014, the Drake Foundation committed to using research to get safety on the agenda. “At that time, brain health in sport was hardly on the agenda. We didn't know what the research would show, we didn’t know how the field would evolve,” says James. “But the neuro-imaging study would go on to change the landscape and led to an immediate change in the enhancement of clinical practice by the RFU, by setting up clinics for retired players. That was incredible.” The pioneering study would reveal that, from a cohort of 44 current elite rugby players, 23 per cent showed abnormalities to their white matter, or small tears in blood vessels, clearly demonstrating structural change to

INTERVIEW

We've seen a big change in attitudes and a widening of the conversation, but I’m saddened that I still don’t think (changes made to date) give it the seriousness it deserves to have. And I'm disappointed by that the brain. Furthermore, among the subgroup who underwent multiple scans, 50 per cent had unexpected shrinkage of the white matter in their brains. While the RFU is, as a consequence of the findings, introducing provision to better support former players through a series of brain health clinics, James remains concerned as to why the statistics are not leading to greater levels of action across sport. “Our study showed that 23 per cent of the small cohort had changes to the white matter in their brains – further research is of course required as we don’t know the long-term effects, nor whether the changes may lead to any clinical symptoms, but nonetheless the response has been quite disappointing. When I've watched rugby, nobody has mentioned this thing. Nobody,” he says. “If you put it in the context of the many reports of players in their 40s complaining about cognitive issues, and we have Stephen Thompson who has come forward with early onset dementia, then we’re walking a bit of a plank. The fact these things aren’t more discussed does trouble me. “I talked to a top a cardiac surgeon and asked if there was any structural changes to the heart, would that just be accepted? He said of course it wouldn't. So I would argue that, just because we know less about the brain, why should it be acceptable here?” Its landmark football studies, the Drake Football Study - the most comprehensive study ever to measure the mental and physical health of professional footballers over time - and the HEADING project, which is working with retired footballers to investigate links between heading a football and neurodegenerative disease, will help to give new levels of evidence into the safety of football.

The response from football and rugby While the Drake Foundation’s research is undoubtedly leading to greater awareness of head injuries and more conversation around the topic, it has also given rise to some action, with the introduction of the RFU’s brain health clinics. World Rugby and the FA have also reacted to research into head impacts by introducing guidance around limiting contact in training in rugby to 15 minutes a week, and restrictions on ten high force headers a week in football - but the Drake Foundation, among many others, has been outspoken around the decision not to make this compulsory. James is passionate in his belief that greater action is needed now. “We've seen a big change in attitudes and a widening of the conversation, but I’m saddened that I still don’t think (changes made to date) give it the seriousness it deserves to have. And I'm disappointed by that,” he says. “While we have seen these moves from World Rugby and the FA, I think you've got to make it mandatory at this time. “My attitude would be don't just recommend the reduction of heading in training, that is ridiculous, you must make it mandatory. “You also must look at the number of substitutes coming on, by all means substitute for injury or fatigue, but not by just bringing on 18 or 20-stone forwards to replace others when you're pacing tired players. “You look at players like Stephen Thompson and realise the need for preventative action, common sense preventative action must be

taken now to protect players from potential harm - even if that harm isn’t fully understood yet - and to stop this from happening to another generation of players, while we continue to carry out research into the exact mechanisms behind it. “It shows that we need change now, we don’t always need to wait for all the research to be published, as changes to the sport now will protect players and also the future of the sports.” But the fact that change is happening, particularly in terms of how widely and regularly it is now discussed, is something that James is keen to welcome. “We’re really pleased to see the landscape changing and the growing of the conversation, including the Government now becoming involved in this important area, which is a good thing. “We’re also pleased to see that sports are making more positive changes to put player welfare first, including setting up advanced brain health clinics for retired players, using this the advanced neuro-imaging that was used in the Drake Rugby Biomarker Study. “Head impacts are becoming a bigger conversation, and that is good to see. Commentators do mention concussion and how serious it is, which is important as awareness and education are a huge part of tackling this issue. “We're starting to see head injuries being discussed more in mainstream media and player communities now, rather than just the scientific and medical communities, and that is great to see. “I think we're seeing also more support given to current and retired players in the elite rugby and football games. “I'm pleased to see conversation in this area of growing, and it's now on the sport agenda. I'm quite certain that the work that Drake Foundation has done has helped to catalyse that.”

INTERVIEW

The impact at grassroots level While the increased awareness of the risks that participants of all levels face in contact sport is undoubtedly a positive thing, one area which is seeing the adverse impact of that is in grassroots rugby and football. Research from the Drake Foundation has revealed that around two thirds of amateur rugby players, and the parents of youth players, are concerned about the long-term impact of rugby on their health, which raises concerns around the future of such sports. “Clearly, we have a problem our hands

here,” he says. “Our studies have been concentrated on elite rugby and football, so they're not directly extrapolated to the grassroots level, but people will take quite a lot from them. “Our own market research has shown this, and there are many who are sadly pulling out of playing the sport of rugby or considering doing so. “COVID has been absolutely devastating to children so the last thing you want to do now is to stop children playing sport. Really, it's essential to them.” James believes it is fundamental to see safety measures extended to all levels of rugby and football.

“It’s good to see the changes being made in elite sport but that needs to translate across sport and through to grassroots level so that sport can be enjoyed safely by everyone. “We're sports lovers, so we want to see a combined effort across research, as well as policy and education, to fast track our understanding of head injuries in sport, and mitigate against risks, so sport can be enjoyed safely by all. “It’s great that RFU are taking the lead in the professional game, but this does need to translate through to grassroots level to avoid the continuing drop out from youth rugby.”

INTERVIEW

The future

The focus on Intimate Partner Violence (IPV) As part of its commitment to funding and pioneering research in under-represented areas, the Drake Foundation has thrown its weight behind efforts to better understand links between IPV and brain injury. Already an area James believed deserved greater attention, his passion to lead research has only grown after an email from one survivor who expressed gratitude for his commitment to helping champion the cause. “It's one of the most inspirational emails I’ve ever received. She's telling it from the heart, every word, and it's measured,” he says. “I think what makes me incredibly passionate about this is that it’s not just women like the one who emailed me who are affected, but it’s also the fact there are children sitting in the background who are inevitably damaged by this. “It's horrible, because it's not just physical or emotional, it’s also intimidation, which is a terrible thing.” The Drake IPV Study, led by Professor Willie Stewart - who has played a critical role in research to date around head injury in sport and neurodegenerative disease - will investigate changes in neuroimaging and cognitive test data in people exposed to domestic abuse,

to give a greater understanding of IPV-related head injury and how it can contribute to dementia risk. “IPV affects probably millions of predominantly women, but also men too, across the globe. But we know very little of its long-term effects, and we know even less about its effects on brain health,” says James. “We hope this project will not only not only advance our understanding, but also will help to bring this sensitive but crucial issue to the fore in the hope of catalysing conversation, as well as increasing support and making positive change. “I feel enormously strongly about this, based on that email and my own personal dealings. Through this study, it will give us hopefully a greater understanding of IPV-related head injury, as well as head injury in the population, together with an understanding of how such head traumas contribute to dementia risk. “As with the excellent people we work with on our other research, we are very fortunate to work with outstanding people on this project. They are incredibly committed to this work and I'm so proud to be linking with these people. We couldn't have found a better partners, and it's always about the partnerships.”

While much has been achieved since the creation of the Drake Foundation in 2014, James acknowledges there is still much to do - but research lies at the root of making that happen. “More research is always needed. The brain is a very complex organ so it will take decades to fully understand it,” says James. “But to make change, you have to start. For us, the first step was in going to a rugby club and persuading them to do a study, and that was a really hard one. The CEO said to me at the time ‘The first step is the hardest thing’ and it really was. “You can provide money, but you need the commitment, the people and the collaboration to do this research and to lay the foundations. “I’m very proud of what we have achieved, particularly in the connections we've made between sport and science. But we need to do more, and will do more.” Paving the way for the future of relationships between researchers, medics and governing bodies is the Drake Sports Head Impact Research Symposium, an annual event which brings together professionals working across all fields whose expertise can combine to effect change. “This year was its biggest year to date, bringing together key individuals and organisations who can advance our knowledge in this area. This connecting of people is something I’m incredibly proud of, and one of our biggest achievements,” says James. This, and the ongoing commitment of those in a position to make change, will be key in the positive progress to date continuing, says James. “There is a lot more to be done. I love sport and want to see it enjoyed safely at all levels,” he says. “So, into the future, alongside the research, I hope we’ll continue to see more conversation and positive change to protect players and protect sport. “Through doing so, I hope we will see some extrapolation of these results to help the community at large. That has been the ambition from day one, and continues to be so.”

T h e D ra ke Foundation * James Drake is the founder and chairman of The Drake Foundation, a not-for-profit organisation committed to funding research into head injuries in sport and beyond. For more information visit www.drakefoundation.org

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Pilot studies will be carried out using the ExoMotus M4 gait training device, the AnkleMotus M1-A ankle joint rehab robot and bedside cycling device CycleMotus B2L all sector-leading robotics developed by Fourier Intelligence, as part of its commitment to involving global expertise in the creation of the best possible devices for patients. By the end of the MoU, initially signed in 2019 and renewed until 2027, up to 100 bedside robotics will be in use in the Shirley Ryan AbilityLab.

Through collaboration, we c a n c h a n g e t h e f u t u r e s o f p a t i e n t s wo r l d w i d e

Fourier renews change-making SRA partnership A partnership between Shirley Ryan AbilityLab and Fourier Intelligence is being renewed, with a focus on research to help improve outcomes for patients and the further development of worldleading rehab technology. 28

The renewal of the Memorandum of Understanding (MoU) will see devices created by Fourier Intelligence installed in the Legs + Walking Lab and DayRehabilitation centres at the pioneering Chicago research hospital, to gain data on their impact in neuro-rehabilitation. The bedside robotic devices will be used for the benefit of patients currently in the Shirley Ryan AbilityLab in their ongoing recovery, but the research will help to influence outcomes on a global scale. To develop that further still, a joint application will be made for larger-scale clinical studies with patients over the next five years of the MoU.

The renewal of the partnership was celebrated in an official MoU signing ceremony attended by leading figures from the Shirley Ryan AbilityLab - Richard L. Lieber, Senior Vice President & Chief Scientific Officer, and Professor Jose Pons, Director of the Legs + Walking Lab - alongside leaders from Fourier Intelligence - Zen Koh, Co-Director, University of Melbourne & Fourier Intelligence Robotics Lab; Owen Teoh, General Manager, Fourier Intelligence. “Through collaboration, we can change the futures of patients worldwide,” says Zen Koh. “We share a commitment with Shirley Ryan AbilityLab to do all we can to maximise outcomes from rehabilitation through the creation of world-leading robotic devices, and we will work in partnership to achieve this. “With the renewal of our MoU, our efforts will focus on research and data collection from trials, which will support our work in creating the technology which will give clinicians the means to deliver optimum rehabilitation. This will help in redefining the potential for patients in their ongoing recovery. “The robotics bring together outstanding talent and expertise across continents to create the robotic devices that will change the lives of patients who need them. “By working together we can achieve great things, as we will continue to do with Shirley Ryan AbilityLab over the next five years and beyond.”

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MotusAcademy launches The MotusAcademy has been formally launched to advance knowledge sharing of rehabilitative and assistive technologies, with plans already in place to expand further on a global scale. The platform is dedicated to promoting continuing development and education in rehabilitation robotics, bringing together leaders in their field internationally for the advancement of the sector. MotusAcademy, based in Zurich, Switzerland, has partnered with the International Industry Society of Advanced Rehabilitation Technology (IISART); the MINT Academy, created by Hobbs Rehabilitation in the UK; and the European Center of Neurosciences in Spain. Now set to advance its ambitions further, MotusAcademy will establish its Asia Pacific Hub in Singapore by the end of 2022, with hubs also planned for North America, South America, the Middle East and Africa. The platform offers educational resources which are freely available for the advancement of rehabilitative and assistive technology, supported by a minimum of four educational seminars held every year by each of the hubs. MotusAcademy will also launch an official publication, the Journal of Rehabilitation Methods and Technologies (JRMT), which aims to be the leading journal to focus on emerging rehabilitative and assistive methods and technologies. To mark its official launch, founding members attended a virtual event to celebrate the occasion. The event featured leading names in rehab tech globally, including newly-elected MotusAcademy President, Professor Robert Riener, director of

the Sensory-Motor-Systems Lab at ETH Zürich; Vice President, Professor Jose Pons, director of the Legs+Walking Lab at Shirley Ryan AbilityLab; and Zen Koh, incoming President of IISART and Co-Founder of Fourier Intelligence. The scientific advisory board for MotusAcademy is represented by members of the GReAT network. “The creation and formal launch of MotusAcademy marks a significant step forward in the fast-growing area of rehabilitative and assistive technologies, uniting global partners who share a vision to work together to improve lives of patients around the world,” says Professor Riener. “As we create new hubs in more international locations, we will expand and grow knowledge and promote education even further. “This is a global mission and we want to work as widely as possible. We look forward to collaborating with like-minded partners to jointly

promote the advancement of this field.” Zen Koh says: “Education is central to the development of rehabilitation robotics, and through MotusAcademy, we are dedicated to promoting this across the world, to people in a range of professions at all stages of their careers - whether they are engineering students or medical professionals, continued development is crucial to achieving the full potential of this sector. “Collaboration is how we can collectively achieve success, and ultimately deliver the best possible outcomes for patients, so we are very pleased to be able to share MotusAcademy and its resources with the world. “By working together, we can deliver positive change and realise what we can achieve in advanced rehabilitation robotics.” More details on MotusAcademy could be found at www.motusacademy.org

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How research can promote good practice and innovation The Disabilities Trust recently held its first research month, inviting staff and the people who use their services to discuss their thoughts on research. The Research Month initiative intended to encourage people to get involved and to raise awareness of the importance of research in promoting good practice and innovation. Dr Rudi Coetzer, Director of Clinical Services at The Disabilities Trust, tells us about the campaign and reflecting on why research is so crucial. “What is research for? I would venture a hypothesis that if we asked 100 people if they did any research, the majority would say no. ‘Research is for academics, not me’, they might say. But is that true? And this is essentially what cuts to the heart of research. Research is simply a process we use to search for the ‘truth’. Let us now return to the above hypothesis, that the majority of people do not engage at all with research. Research is for academics or scientists, remember? However, an alternative hypothesis would be that most, or even all of us, already do research, at least in some situations. Is it possible that this alternative viewpoint is the ‘truth’?! To find out, we need to do an experiment, or assess what the alternative point of view is based on.

“Keeping up to date, learning more about a topic, progression and b e s t p ra c t i c e” Colleague at The Disabilities Trust

Take the following examples. How do you decide on what mobile phone to get next, which car to buy, or where to go on a holiday? It is highly likely that most of us gather information, weigh up the facts, and then decide, based on our conclusions which, for that specific question, is our ‘truth’. To illustrate this point, let’s take the decision about a mobile phone. We might want to consider information such as price, operating system (Android vs. iOS), camera, storage, screen size, weight, resistance to dust and water – the list can become quite long. After assessing this information (some of us might even use numerical comparisons), we decide on what ‘truthfully’ will be the best new phone for us. Considering the above, it now looks like it is possible, or even probable, that most of us already use research as a method, or way of thinking, to make some (but not all) of our everyday decisions. Research and, for that matter, science, should not be impenetrable, or shrouded in mystery. The general aims of research, and the results and conclusions arising from it should be so easy to understand, to the point of being obvious to any casual observer. Research is for everyone. It provides us, within limits, the confidence to not only find out what might be the best mobile phone for us, but also in making more complex decisions about, for example, what is the best rehabilitation for a person we care for.”

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Research can have positive effects on outcomes Sara da Silva Ramos, Senior Research Fellow at The Disabilities Trust

Have your say The Disabilities Trust has launched a survey to better understand the everyday impact of life with a brain injury. We need people with a brain injury and their families to share their views. It’s part of a larger project to understand the experiences and needs of those living with a brain injury, as well as finding out about any gaps in care and support. The findings will help us highlight what it’s like for people living with a brain injury and their families. We’ll use this information to inform our campaigning, engagement with government and the future development of tools and resources. https://survey.alchemer.com/s3/6843468/PF1044c

“ I t h a s h e l p e d s t a f f s u p p o r t m e” Person supported at The Disabilities Trust

There is increasing evidence that being involved in research can have positive effects on outcomes. For example, in a systematic review, Nijjar and colleagues [1] found that participants in randomised controlled trials had 25% better odds of improved women’s health outcomes. This was enhanced in high quality trials, and interestingly, the benefit was sustained whether the researched intervention was effective or not. A study by Downing and colleagues [2] found an association between hospital level participation in interventional clinical trials and cancer outcomes. Hospitals with high research participation were linked with lower mortality rates and increased 5-year survival rates. This effect remained after adjusting for case mix and hospital characteristics. More recently, Selby and colleagues [3] proposed a model of the mechanisms that might link clinical research to improved outcomes, including better performance and faster uptake of evidence-based practice. These findings come from the fields of obstetrics, and cancer research, but there is every reason to hypothesise that they might extend to other areas of health care, including brain injury. Wide involvement in research, however, does not materialise overnight. The Disabilities Trust’s Research Month has been but one step in starting to make this happen within our services. But the journey will carry on... To find out how The Disabilities Trust are doing, the Research Digest www.thedtgroup.org/research /research-digest page is the one to visit for regular updates. And you are welcome to email research@thedtgroup.org with your questions or suggestions.

[1] Nijjar, S. K., D'amico, M. I., Wimalaweera, N. A., Cooper, N. A. M., Zamora, J., & Khan, K. S. (2017). Participation in clinical trials improves outcomes in women's health: a systematic review and meta-analysis. BJOG: An International Journal of Obstetrics & Gynaecology, 124(6), 863-871. [2] Downing, A., Morris, E. J., Corrigan, N., Sebag-Montefiore, D., Finan, P. J., Thomas, J. D., Chapman, M., Hamilton, R., Campbell, H., Cameron, D., Kaplan, R., Parmar, M., Stephens, R., Seymour, M., Gregory, W. & Selby, P. (2017). High hospital research participation and improved colorectal cancer survival outcomes: a population-based study. Gut, 66(1), 89-96. [3]3 Selby, P., Liu, L., Downing, A., Banks, I., Wilson, R., Stephens, R., Meunier, F., Rochon, J., Morris, E., Seymour, M., Gregory, W., Lawler, M., & Boaz, A. (2019). How can clinical research improve European health outcomes in cancer?. Journal of Cancer Policy, 20, 100182.

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‘Clients are at the centre of everything, but the wellbeing of our team is paramount too’ Stanley Smith Case Management is committed to delivering a first-rate service to clients whilst protecting it's team from stress and burn out so regularly seen among healthcare workers. NR Times learns more about how its approach is helping it stand out in the field From the earliest days of Stanley Smith Case Management, the business has focused on the link between offering a first-rate service to clients and ensuring staff are equipped with the support to deliver this. While clients and their needs are at the centre of the service Stanley Smith offers, founders Heidi Stanley and Nikki Smith have been determined from the outset in August 2018 that it must not come at the expense

of its case managers’ wellbeing. “Many of the cases we work on are so complex and so emotionally challenging, it’s important that the case manager has boundaries,” says Heidi. “So they can be effective in their role, and be most effective in their support to the client, we need to have the means to support them and retain their enthusiasm, while protecting them against burnout.”

We t a l k a b o u t how things actually might affect us as people, in addition to what we're doing as case managers

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Psychology-led support While the provision of mentoring has been in place from the start, Stanley Smith’s commitment to its team has only increased over the past few months, as case management looks to the future after the huge challenges of the COVID-19 pandemic. The introduction of psychologist-led mentoring groups has been a valuable asset to Stanley Smith and its multi-disciplinary team, who specialise in highly complex cases, through being given the opportunity to share their experiences and offload in a supported environment, which then in turn enables them to give the best service possible to clients and families who depend on their support. “We tend to work with really quite complex clients, which is very challenging. The role of the case manager is dealing with everything within their life, so the work and the responsibility is incessant. For a case manager, it can be all-consuming,” says Nikki. “Through the sessions, which are facilitated by an extremely experienced psychologist, this gives a really safe space to be able to discuss cases, ideas, issues, and have the ability to hear other people's views. “This then gives us a different viewpoint, and gives a deep understanding into psycho-social effects that it could have on people.” “We can talk about how it actually might affect us as people, in addition to what we're doing as case managers,” says Heidi. “Part of the boundaries we put in place are ensuring the case manager is not going over and over their cases all of the time, at the expense of them being able to switch off, and having the opportunity to share any concerns. It’s also really important that we reflect on the good work we do and give ourselves a pat on the back. “As directors, our door is always open and our team can come to us at any point, but dedicating the time to have group sessions with a psychologist is very important. “In that group environment, we can all discuss something that may be a sticking point or an issue and come up with different innovative ideas of dealing with whatever that challenge is. Because we’re a very experienced multi-disciplinary team, we can share our knowledge from different viewpoints, which can be very effective.”

Client-centred care For Stanley Smith, this focus on the wellbeing of its team is central in the business being able to deliver the service for which it continues to build its reputation, with the client and their family at the centre of everything. “Our ethos, and why we created the business, is that we put the client very much at the centre, and look at every case with a focus on quality, drive and compassion. We're passionate about what we do and the support we give to clients and their families,” says Heidi. The growing business, which covers the South West of England, regularly takes on clients who have previously and

We h a v e d e v e l o p e d a niche in highly complex work, which is why we are often referred cases which have been through a number of other case managers previously unsuccessfully been with a number of other case managers, and enables them to progress as never before. “Our approach is that if we do it in the same way that everyone else does, then the outcome will be the same for the client and the relationship with the case manager will break down again - we have to do it differently,” says Nikki. “When we have a new case, we plan with the case manager and look innovatively at the best approach to use to manage complex cases. This has included working closely with specialist support workers, who have a dual role of working with the client and the case manager and Stanley Smith team. “We have also recently appointed a clinical support case manager to look at all of our cases when needed and cover existing case managers when they are off.” Heidi continues: “We have to think intuitively and approach each case on its own unique circumstances and find the best way forward. “We work closely as a team and value each other’s clinical backgrounds. Within the

company, we've got OTs, physiotherapy, speech and language and nursing experience, and they all have extensive experience in what they do. “I think we have developed a niche in highly complex work, which is why we are often referred cases which have been through a number of other case managers previously, but we have the motivated and capable team to be able to deliver the results others haven’t.” And through the focus on the wellbeing of its team, Stanley Smith case managers are then able to support clients effectively in the most difficult of circumstances. “I can think of one client case manager in particular, where she is managing a client to stop them hitting health and social crisis,” says Nikki. “She’s holding a lot because the statutory services that should be involved, unfortunately, are stretched and not involved. But she's doing such a good job and this client is in a safe place, which is thanks to her efforts. “But against such pressure, as a team, we support each other and we can work through any issues and make sure she’s OK, so she can reflect on her good work and know she’s on the right track.” Focus on quality With a committed and motivated team, working to achieve the best possible outcomes for clients, Stanley Smith continues to develop its reputation for the quality of service it delivers. “We're really working hard on quality across the board for the provision of case management that we offer,” says Heidi. “Clients are at the centre of everything and we continue to develop our knowledge base to move forward and be at the forefront of what we can do. We continue in our professional development to do the very best we can. “The role of our new clinical support case manager is to look at quality, standards and outcome measures, and also to audit our work. It’s very important to ensure we have a consistent approach with not just the clients but also the carers. “We are committed to delivering that high level of quality with a happy, collaborative team working together and really making a difference to people’s lives - that’s what it’s about.”

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Changing the future through research T h r o u g h wo r l d - l e a d i n g r e s e a r c h i n to h a e m o r r h a g i c s t r o ke , s c i e n t i s t s a t Manchester University have made a major breakthrough in the potential for treating the condition, giving hope to survivors around the world. I n a v i s i t t o t h e U n i v e r s i t y ’s AV H i l l B u i l d i n g , N R T i m e s l e a r n s more about their pioneering work, and how the philanthropy of the N a t a l i e K a t e M o s s Tr u s t - c r e a t e d i n m e m o r y o f N a t a l i e , w h o d i e d after a brain haemorrhage, aged only 26 - is helping to change the reality for countless other families

The change-making research Groundbreaking research involving zebrafish is giving hope to haemorrhagic stroke survivors, with the discovery that existing drugs could support their recovery. NR Times meets the University of Manchester scientists behind the pioneering project Professor Stuart Allan, Dr Siobhan Crilly, Dr Paul Kasher and Dr Adrian Parry-Jones Through a world-first use of zebrafish larvae to investigate brain injury mechanisms after haemorrhagic stroke, scientists are breaking new ground in understanding the condition and may be within just five years of being able to introduce new treatments for survivors. While traditionally stroke research is done in rodent models prior to human trials, scientists at the University of Manchester are making

significant advances from the study of two-dayold zebrafish who sustain bleeds on their brain and resultant paralysis. The use of zebrafish has enabled the team to discover a unique platform for drug screening, to rapidly identify neuroprotective compounds following intracerebral haemorrhage (ICH). And from the large-scale screening of 2,000 existing drugs which could be considered as potential treatments, the team have found 150 have the potential to help - with six enzyme inhibiting drugs already in common use for hypertension. Two - ramipril and quinapril - were then further assessed to confirm a 55 per cent reduction in brain cell death. And with future clinical trials being made much simpler by the fact they could involve repurposed rather than new drugs, the Manchester team anticipate it could be as

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little as five years before their research can help save lives and protect quality of life among survivors. Further pioneering research into inflammation is ongoing, which will add further to the University’s growing status as leaders in brain haemorrhage. While renowned for its stroke research, Manchester’s involvement in haemorrhagic stroke dates back only ten years, through the link with the Natalie Kate Moss Trust (NKMT). Her family have since fundraised tirelessly to help fund the research which will help to change the future for others - something which now appears to be firmly on the horizon. “We are making big strides, and we’re hopeful that within a few years we can be putting these treatments into clinics. From the work we’ve done, we’ve seen this has a good chance of working,” says Professor Stuart Allan, who is leading the research team. “If you’d asked me ten years ago whether I’d be happy with the stage we’re at now, I’d have said yes, absolutely. We’ve made some great progress as a team. “Haemorrhagic stroke has not been widely researched, the main reason probably being that ischemic stroke is much more common, with around 85 strokes in every 100 being ischemic. “Through our work we are gaining recognition in what remains an under-studied area - but the fact that it is a niche area makes research even more vital. “I am confident that in maybe even five years, we will see some improvements in outcomes, which can be through a combination of treatment and rehab. “Rather than there being a ‘one bullet fix’, we can look at the change in the delivery of healthcare and the rise of personalised medicine to realise

there is no one single drug that will necessarily improve things for everyone. “Our research is indicating some drugs are going to be very important here, which is a big step forward for those who have experienced haemorrhage.” The use of zebrafish has been a fundamental part of the team’s research, and is a research tool Dr Paul Kasher has used for a number of years. With an esteemed background in genetic research, particularly in rare childhood stroke, is involvement in haemorrhagic stroke came through NKMT funding. “The findings are proving how useful fish can be in drug discovery in stroke, we’ve been able to identify drugs that are potentially useful to patients, which is the whole point of what we do and why we’re doing it,” says Dr Kasher, group leader of the zebrafish drug discovery work. “For years, the stroke community have relied on rodent models, stroke research is very mouse heavy. But nothing that has been done in mice and rats has translated into patients, and we realised that needed to change. “Through this model, we are able to use my

research and interest in rare genetic diseases to potentially provide mechanical and biological clues into haemorrhagic stroke. We are gaining new understanding into the link between cholesterol-related signalling and blood vessel stability in the brain with haemorrhagic stroke. “And now that we have published data, people can see the results and see how effective the zebrafish model can be in this area. “In wider diseases research, the zebrafish model is becoming really popular, but in terms of haemorrhagic stroke, I believe we are the only group to be using it in this context and translating that to patients. “But our absolute priority from day one has been to show that the discoveries we make in the fish are relevant to what we see in patients.” Dr Siobhan Crilly joined the team in 2016 for her PhD, which focused on using zebrafish larvae to model brain haemorrhage, and has since secured a Fellowship to further develop work in the condition, which is ongoing. “The use of zebrafish has enabled us to really upscale the screening process, we can use huge numbers of them, while also using less

We are making big strides, and we’re hopeful that within a few years we can be putting these treatments into clinics

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animals in labs through using fish rather than mouse models. The results are quite exciting,” says Dr Crilly. “In our work with the fish, through the impact of the ACE (enzyme) inhibitors, we could see that this stopped some of the brain damage, they were able to swim a lot better - whereas previously, they were being left with heavy paralysis, now they were able to swim as well as their siblings. “Patients are already using ACE inhibitors in clinics, so these are drugs that are known and used. And from the data we have published, we now have success we can measure in fish. “The next step is to make this translatable away from the aquarium and into the hospital.” And for Dr Adrian Parry-Jones, who combines his research with his role as a neurologist at Salford Royal Hospital, the importance of securing that translation, to improve the lives of haemorrhagic stroke patients, comes with daily reminders. “My interest in ICH research started around 2007, when I first started doing a lot of clinical work in stroke,” he says. “You realise how ‘clockbusting’ this really is,

when someone comes in and they’re rushed off for a scan to rule out haemorrhage - if it came back saying the scan showed a haemorrhage, you could see people stop, and the worry and concern on the faces of the whole team. “That experience brought me into research, as we need to change that.” From there, Dr Parry-Jones has been involved in pioneering work in investigating inflammation in the brain, although

years of work culminating in a clinical trial around the repurposing of existing drugs unfortunately coincided with the COVID-19 pandemic. While the trial was aimed at including 80 patients, it was only possible to enrol 25. “We did need more participants, but we were able to show a reduction in brain swelling as a marker of inflammation, which is a very good basis. We didn’t have enough people in this trial, but do have enough evidence to take this forward to a larger phase trial,” he says. But while treatment is clearly vital in making positive change for patients, Dr Parry-Jones also highlights the impact of a high standard of care as being equally critical in supporting people after ICH. Salford Royal NHS Foundation Trust (now Northern Care Alliance NHS Foundation Trust) - oversaw the creation of the ABC ICH - ABC standing for Anticoagulant reversal; Blood pressure lowering; Care pathway - and since then, has seen a reduction in 30-day deaths by one-third - 35.5 per cent to 24.2 per cent. The approach has since been rolled out to 27 hospitals across the North of England. “As a clinician, this is something I care deeply about, delivering the care at the coalface, as well as thinking about what additional treatments we can give,” says Dr Parry-Jones. “I think my ongoing clinical work is vital to keeping the research relevant, so we are tacking the things that really matter. I see the problems that exist and I see out role as to try and address those. “During the pandemic, stroke research has been very badly affected as everything went into COVID research, and we’re struggling to get back to where we were but we will keep going and keep sight of why we’re doing this.” And that is at the very heart of everything the impact on the lives of those affected by the devastation of brain haemorrhage. “Adrian sees it day in, day out, the impact that haemorrhagic stroke can have on people and their families, the devastation it can cause, and that’s not lost on any of us,” says Prof Allan. “It’s really vital to have Adrian as a clinician in the team, as that clinical focus is a constant reminder of why we’re doing this, it keeps us grounded. That’s the reality, we’re working on these problems that are causing tragedy to people’s lives and don’t yet have any solutions - but we are confident that in the years ahead that will change.”

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The legacy helping to change the future From the devastation of the death of Natalie Kate Moss, her family are now helping to change the future for others through funding vital, world-leading research in the field.

“I pledged on the night Natalie died that some good would come out of this,” says Natalie’s mum, Anita. “We had no idea anything was wrong, there was no indication, no warning, before she had the stroke. It came out of the blue, it was devastating.” But despite their devastation, the family found the strength to found the Natalie Kate Moss Trust (NKMT), which is now playing a central role in making groundbreaking research into haemorrhagic stroke a reality, through financing work at the University of Manchester. The Trust, marking ten years this year, has financed research by scientists at the University of Manchester - of where Natalie was an alumna - for a number of years. And now, through the dedication and innovation of stroke researchers, hope is on the horizon with positive progress being achieved towards its ultimate goal of saving lives and changing the futures for other families. In addition to its fundraising to date, NKMT has committed to raising £300,000 to fund a postPhD research fellow for three-and-a-half years, advancing the University’s renowned stroke research even further.

“Research is at the heart of everything,” says Fiona, Natalie’s sister. “While it’s a slow process, and a piece of research can take years and years, this is how we are going to achieve the change we need. “Initially when we established NKMT, we wanted to do something but didn’t really know what, so began supporting students at the University who had a brain injury. We’d give a grant to buy a laptop or perhaps to help them get around in taxis. “But from there, it started to evolve, and we thought about the impact of research. Rather than helping one or two people now, we thought of the bigger picture, and how research can help change lives into the future. “Rather than diluting our focus, we decided to concentrate all our efforts into fundraising for research.” Having contacted the University with their wish, Fiona and Anita met leading stroke scientist Professor Stuart Allan, alongside then-stroke lead Professor Pippa Tyrrell, to look at taking their aspirations forward. Since that initial meeting almost a decade ago, Prof Allan’s team have diversified their research into haemorrhagic stroke for the first time, and

through the initial support of NKMT funding, have managed to secure significant grants to build further on their progress. “Stroke isn’t a fashionable topic, it’s often put on the back burner,” says Fiona. “Because not many young people are affected by stroke, there isn’t the energy, the proactivity, that we see with something like breast cancer or Type 1 diabetes. “We wanted to do something about that. We want the reality to be very, very different. There is very little conversation around stroke, but through research and the progress that is being made, we can change that.” Having set its ambitious fundraising target, the Trust is continuing to work its way to the £300,000 milestone through a wide array of initiatives, from partnering with businesses to participation in major events, including the Manchester Marathon, which Prof Allan himself took part in on behalf of the charity. NKMT is also hosting a landmark 10th anniversary dinner later this year. “The initial motivation for us is still there, it will always be there. We keep going and see what else we can do, and it’s been fantastic to work with Stuart and his team in getting here,” says Anita. Prof Allan is fulsome in his praise for the Moss family and their philanthropic efforts. “While it’s becoming more common for families and individuals to help fund research, and philanthropy is not new, it is rare for a family to come so soon after their loss with such ideas about what they wanted to do,” he says. “Prior to meeting Fiona and Anita, we had not concentrated on haemorrhagic stroke, so that has been a whole new area of research for us. “And through their funding, we have had people working in this building who had never met before, now working as part of a team in taking this forward. “Fiona and Anita come in often to find out what is happening, to meet the team and speak to us, and that’s great to see. For them, this is hugely personal, and their story and their efforts are always a reminder to us as a research team of what we’re working towards.”

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The growing role of philanthropy While it is not in doubt that research is fundamental to progress and change taking place, sadly it is not always so certain that this vital r e s e a r c h c a n t a ke p l a c e . For at the heart of research being able to proceed is the funding to make it happen - and that is not always easy to secure. And in an area such as stroke, where its consequences can be instant and devastating, research to help regain quality of life and maximise recovery potential is hugely important. “Stroke has the immediacy in its impact, it can cause death or impaired quality of life, but there are still not the treatments, the death rate for brain haemorrhage has barely changed in 30 years,” says Professor Stuart Allan. “I’ve always wanted to be a scientist, even from an age where I didn’t really know what that meant, I’ve wanted to find treatments and help people achieve a quality of life. In stroke, that is a fundamental discovery we need to make. “And the truth is that to do the research to change this, we need the funding. What we and other labs in other universities do isn’t a competition, we’re working towards the same goals to change people’s lives, but it is tough to fund it. It’s not easy out there. Everyone is fighting over the same pots of money, and not everyone will be successful.” And that is where the growing role of philanthropy and support from private donors comes to the fore. As with the Natalie Kate Moss Trust (NKMT) and their commitment to support research, their fundraising is helping to change the outlook for countless others around the world. “Research needs funding, and while in the United States family funding is very common, most labs I know over there have a bigger percentage of philanthropic than Government funding, in the UK is something that is growing but is not commonplace,” says Prof Allan. “I think families might think, ‘How is a few thousand pounds going to make a difference?’ But it’s not always the very significant amounts that make the biggest contribution.

“Every bit of research we do costs money and even small amounts can help take that forward. By being able to begin or advance some research, we can then look to secure bigger grants. “We do have a few different donors who have given money to our research, for which we are very grateful, but I think it’s sometimes difficult for charities to raise money for research, because there isn’t that immediacy. Research can take years and even then there is no guarantee on the outcome. “But what I’ve loved about working with NKMT is how involved they are, and the fact it is so personal to them inspires others. “From our initial meeting and then the initial sum of money, they have supported our work, they come in and speak to us, and that has a really positive effect.” And another very positive impact of funding is that individual pieces of research and expertise can unite to create new teams, bringing together individual researchers within the same University and even the same building, says Prof Allan. “When the initial £12,000 funding from NKMT was opened up for applications, we had an application from Dr Paul Kasher, we had worked in the same building for some time, but we’d never met,” he says. “He was working in genetics, I was working in adult stroke without genetics, so we were working in different parts of the same field. “Through Paul applying for this funding, that is how we met, and how he became a central part of the team.

“Dr Adrian Parry-Jones has also come into the team through NKMT funding. It helped us to collaborate with Adrian at a very early stage of his career and to gather momentum to get the research moving. “Dr Siobhan Crilly also came to us for her PhD and she’s now on a Fellowship. We need more Siobhans, more young and aspiring scientists, they are the future of research in this area and taking it forward - and that needs funding to make it happen. “Teamwork is absolutely key in all of this, we’re a great team, and the different niches we’ve developed in our careers have all tied in nicely around haemorrhage. “I call it fate that sometimes these things happen, as we easily may not have met and this all may not have happened.” And the involvement of those directly affected, whose personal stories they come to know, is something that continues to inspire the whole team. “Through working with a family who have been directly affected, you do feel a responsibility to keep pushing forward, keep working towards the ambitions, that’s always at the front of your mind. It reinforces exactly why you’re doing what you do,” says Prof Allan. “Through the support of her family and the generosity of NKMT, this is an amazing legacy for Natalie, with the fundraising in her name now helping future generations. We will keep working to build that further.”

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Case Managers Required Are you looking for a new direction to challenge your professional skills? Are you experienced in improving the lives of children, young people and/or adults who have experienced catastrophic, life changing injuries? Are you wanting a flexible, home-based, full or part-time employed role?

Then you may be who we are looking for, so come and join our team! ILS Case Management is the UK’s leading independent company providing case management for catastrophically injured children, young people, and adults nationwide. Due to our continued success, we are currently seeking Case Managers in the following areas: Basingstoke/ Winchester, Brighton/ Chichester, Southampton/Portsmouth, London and Manchester. The ideal candidate will have extensive experience of working with children and/or adults with catastrophic injuries; such as traumatic brain injury, poly-trauma, spinal cord injury, limb loss and cerebral palsy.

To apply, visit

www.indliv.co.uk and select ‘Our Vacancies’ within the ‘Work with Us’ menu options.

For an informal chat about the role, please contact Lindsey Jojic, HR Manager on 01722 742442

You will have experience of working directly with clients and be able to demonstrate your professional abilities, within the field of complex, long-term health care assessment, care planning and outcomes for clients. Our roles are offered on an employed basis with attractive remuneration and benefits coupled with comprehensive induction, mentoring and professional development opportunities.

To find out more about us, our vacancies and our client stories, visit www.indliv.co.uk

T: 01722 742 442 • www.indliv.co.uk

www.acpin.net

Join us on

11th and 12th July 2022

ACPIN 2022 Multidisciplinary International Conference Emerge, Innovate, Create: Creating spaces for you to explore Royal College of Physicians, London

Speakers Include: > Prof Louise Connell Moving stroke rehabilitation evidence into practice > Prof Gavin Williams Improving mobility after traumatic brain injury with ballistic strength training: Aligning biomechanics and muscle function to exercise prescription to improve mobility following acquired brain injury > Prof Geert Veheyden Upper limb function post stroke. What does recent evidence implicate for treatment intervention at different points on the patient's pathway of recovery? > Prof Merrill Landers Fear of falling avoidance behavior in Parkinson's disease > Prof Julie Bernhardt Early rehabilitation after stroke: What led us here > Prof Frederike van Wijck Robot-assisted arm training after stroke: to transfer or not to transfer that is the question

Book your ticket via the ACPIN website www.acpin.net

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Is Long Covid the short straw? For about 2m people in the UK who have experienced Long Covid, their ability to carry out their daily activities has not yet returned to normal and the wait for a successful treatment goes on. For some it is more than 2 years since they were first infected, for others it is a matter of months. Either way, prolonged symptoms and the possibility of long-term disability remain a reality. BAC KG R O U N D TIYGA has followed the progress of a group of patients who first met each other through a charity support group (Northern Ireland Chest, Heart & Stroke) and were invited to use a simple app to track their symptoms. Data was reported voluntarily, informally for over a year. TIYGA’s study started with 30 signs and symptoms (chosen by app users) and grew to over 50. Many of these could be classed as physiological or neuropsychological. Most participants were fit and/or healthy pre-Covid, many feel sure they were infected in front line work. The age group is 35-64. Most were infected in 2020, some during

early 2021 so only 2 Covid-19 variants were likely to have caused the initial infections. The aim was to minimise recall error and to observe patterns over time. We hoped we would have a digital diary of a path to recovery, sadly treatments are still being developed or trialled. Nobody has fully recovered, although many are less symptomatic than in 2021. Most of the TIYGA app users had been infected 6-12 months before they started using the app in May 2021. Most people continued tracking in 2022 and several are still reporting data in June. Users can report symptoms at any time and most people reported 0-10 scores once a day.

I N F E C T I O N E A R LY 2 0 2 0 Fig 1A: Normalised data from 4 people infected Feb-June 2020 (most likely Wuhan variant)

I N F E C T I O N E A R LY 2 0 2 1 Fig 1B: Normalised data from 4 people infected Jan-Mar 2021 (most likely alpha B1.1.7 variant)

Vaccine 1 A1, A2, B1, B4 Vaccine 2 A3, A4, B2, B3

In a study with 3762 patients globally, over 203 symptoms from 11 organ systems were associated with Long Covid [Davis et al]. Research continues to seek the cause of Long Covid, and it is still not certain if it is one single disease or a process that triggers or accelerates development of multiple other signs and symptoms. A characteristic of Long Covid seems to be that symptoms are not all constant in intensity over time. Symptoms such as fatigue are relatively constant, but many others are intermittent. This makes it difficult for patients to describe during a short clinical consultation, especially if they suffer from fatigue and brain fog.

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FINDINGS TIYGA app users tracked the intensity of 18 neuropsychological symptoms together with indications of the self-management choices they made. They have all added some free text to give context to their journey, for example to describe sensations such as “keep getting wee twitches all over body”. As the study was informal and driven by patient preferences, we cannot draw statistically significant conclusions about the occurrence or pattern of association with (i) Covid variant, (ii) vaccine type or timing or (iii) prior health, personality, or occupation. Headache and brain fog were reported by everyone, albeit at different levels of intensity and relative impact. For those who tracked them, the scores for anxiety, mood, feeling of hopelessness improved in the second 5-6 months compare to the first 5-6 months. Anger or frustration were only tracked from October. As with all self-reported data, these responses are very subjective and not necessarily attributable direct to illness. There may also be some feeling of frustration while treatments for Long Covid are unavailable and worry about long term disability. Within the specific groups of neuro-related symptoms, it was clear that some people were not affected by certain symptoms at all, but some patterns seemed to emerge: > Mood scores changed most over time (e.g., Summer 2021 v Spring 2022) reflecting reduced intensity of most people’s symptoms. > Most people noted changes to sleeping patterns. Some people reported both insomnia and weird dreams, a similar proportion reported insomnia but no weird dreams.

A smaller proportion reported just weird dreams but no insomnia. > Of those symptoms associated with specific body parts (Altered smell, loss of taste, body tremors, numbness in parts of the body, pins and needles, hot or cold hands or feet, tinnitus, restless legs, burning knees, headache) headache was reported by everyone; almost a third reported only headache, a similar number reported 1 other neuro symptom in addition to headache and almost 40% reported 3-5 other neuro symptoms in specific parts of their body in addition to headache. Figs 1A and 1B compare the reporting of neuropsychological symptoms in 2 sets of participants who were infected at different times, probably with different variants. The data were normalised to account for individual rating severity and scores from July 2021 to April 2022. DISCUSSION With such a small group, we cannot define clusters with any certainty, but we can suggest during tracking (6-12 months) the number of entries per person (50-270) gave us plenty of opportunity to observe which symptoms were regular, continuous, or intermittent. We conclude that response to Covid-19 infection can vary considerably from person to person. Research on Long Covid found a higher-thanexpected proportion of Long Covid patients with Central Sensitisation to have certain specific personality characteristics. Several of our participants remarked that pre-Covid they were naturally “always active” and used those same terms to describe themselves. Is it possible that certain personality types were more susceptible to Long Covid while

Fig 2A: Organ systems affected in one patient (all symptoms)

other family members and colleagues with differing personality types had Covid-related symptoms for a short period? Within this group, there were individuals who had two types of vaccinations as well as some who, for their own reasons, chose not to be vaccinated. Such granular data allows investigation of which symptoms increased or decreased in intensity following vaccination. It may well be that a larger formal research study could clearly attribute some of the patterns we have seen to specific common factors. However, when we started, we had insufficient information to structure the study more precisely. We are currently preparing case studies on an individual basis. Further work is being carried out to explore correlations between symptom scores in different organ systems and the variation over time. It would be of interest to design research to investigate specific relationships between symptoms in a larger population and to compare patterns with healthy controls as well as patients diagnosed in 2019 with other diseases (e.g., ME/CFS, MCAS, PoTS) sharing similar groups of symptoms. Fig 2 shows the organ systems affected in one individual. The TIYGA app allows real time observation of symptom progression by healthcare professionals. In future, if there is a range of treatments available, such data will help healthcare professionals to choose the right treatment for the right person. Article by Katrina Delargy hello@tiygahealth.co.uk @tiygahealth www.tiygahealth.co.uk

Fig 2B: Organ systems affected in one patient (only major or continuous symptoms)

TECH

How Gran Gran has inspired next-generation dementia care

From a desire to maintain his grandmother’s independence, David Grey has pioneered a data-driven solution to dementia care which is set to enable people to remain in their own homes for longer. Through GG Care, everyday smart home and fitness technology is being repurposed to enable carers and families to automate care, through the delivery of prompts and reminders via IoT devices, while also being able to monitor their progress remotely and discreetly. The concept, launched in May 2021, is now in use by growing numbers of families and people living with dementia around the world, with strong growth in the UK, United States, Canada and Australia, as people embrace the use of technology to help tackle the growing crisis of dementia - cases of which could triple to 152 million by 2050. And continually evolving to meet the needs of people and their families, GG Care has recently added a personalised service to

carers, where they complete a questionnaire and receive a guide to readily-available technology to help them deliver the best possible care. GG Care takes its name from ‘Gran Gran’, David’s name for his grandmother, who moved from their native United States to be with him in the UK six years ago, so David could become her carer as she battled the effects of dementia. But while David - who has a background in finance and developing hyper-growth startups, with a specialism in data - was delighted to be able to look after his beloved grandmother, the lack of support became very quickly obvious. “I realised I was very green as to what dementia care was. I have such a special bond with her, but didn’t actually know what it meant to care for somebody with dementia,” says David.

TECH

“But I got to understand what that was rather quickly when she was living with me. She's always been an independent woman, so the plan was for her to live on her own and we’d find her a place nearby, although I was nervous what that would actually look like. “Then the pandemic came and her whole routine was up-ended. I was concerned as to how we could now protect her independence, as I had seen what routine change could do.” Having tried unsuccessfully to find tech-based solutions to assist, David saw the opportunity to create his own, which could be used via existing everyday technology, such as Amazon Alexa, Fitbit, Samsung motion sensor and Withings under-mattress sleep tracker. Working alongside co-founder Mario Olivio Flores - who too has experience of supporting a grandmother with dementia - GG Care was created, with David’s data expertise swinging into action at the outbreak of the UK COVID-19 pandemic in March 2020. Through the creation of the means to form the bridge between smart home devices with care, combining remote monitoring with remote assistance, David recognised the opportunity to deliver new and better support to his grandmother and the wider dementia community - 70 per cent of whom are believed to live independently. “I was taking my grandmother on walks during the pandemic so I got her a Fitbit, which she loved, but would forget to charge it,” recalls David. “And right before the pandemic came, I took

her to a seniors’ club and they were they sang a song that neither of us heard in 15 years. She was able to recite all the words verbatim that’s when I understood the power of music. “I got her a radio, but she wouldn’t remember to turn it on. “I think my background in tech made me look at things differently. Rather than try to create a solution starting from scratch, or buying a particular company’s kit, why can’t I use what’s already available? “So I realised, that through getting her an Alexa, I could programme music to come on for her in the morning, I can make up a special playlist of her favourite songs. “I also found a way to create an Alexa Skill specifically for her, to give step by step instructions to charge her Fitbit. “I programmed it to come on every night at 8 o’clock. It would ask if she was wearing her watch, tell her where it would be if she wasn’t (in her coat pocket), give her time to find it, and then give instructions on how to connect the charger.” Through devising a way to automate reminders for basic tasks, David began to see a strong response from his grandmother. “After about two weeks, I came into her room and the watch was on her charger - it wasn't 8 o'clock yet,” says David. “Unbeknown to me, I had conducted cognitive rehabilitation therapy, which the academics tell me happens when you give someone a repeated instruction so they can learn new skills, even though they have cognitive issues.

“I thought that was really interesting, and wondered what else could this do.” And from there, GG Care created the means for an Alexa to become a ‘virtual dementia care companion’, with other commonplace tech also playing a vital role in enabling people to remain socially connected through interactive engagement, while their families and carers can monitor their wellness remotely. As well as delivering new levels of independence, its value among medical and care teams is also significant. “When I take my grandmother to the doctor, they love it because I could give them actual data about her sleeping patterns or activity or the steps she takes in a day - this is really valuable information to show how a person lives, as they can’t always rely on the information they give themselves,” says David. “And it’s all done via technology people are familiar with, they trust the findings, they know they’re accurate. So that’s really important.” The redefinition of the role of smart home tech as being at the heart of dementia care is of huge significance in realising its potential, he says. “It is our belief that the devices to help people live independently with dementia already exist and you can buy them on Amazon. You can get them delivered the next day,” says David. “I'm not even sure if the manufacturers themselves know the use they could have. “When you think of a motion sensor, often you think of a busy yuppy who wants to come home and their lights automatically come on. “But what we want is to help people think of the role they have in helping a person with dementia just go to the bathroom at night without tripping over something, because the motion sensor has allowed them to see.” From the initial prototype proving its efficacy, GG Care launched to the world a year ago, with more than 300 registered users to date and pilot trials ongoing to refine and develop its offering even further. “The feedback through the pilot is so important to make sure that you’re doing the right thing, the things that people want and need, and that it’s not just specifically around my unique circumstances as an only grandchild looking after my grandmother,” says David. “We want to be making sure it’s widely acceptable for everybody to use. We’re having regular conversations about what they liked, what they didn't like, what we could make better - this will really help us to improve the product itself and make it even more important in creating a new kind of dementia care.”

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Exceeding expectations the impact of effective brain injury rehabilitation After Abbie sustained a serious traumatic brain injury in a road accident aged only 19, her ambitions to continue with her studies and career aspirations took a severe knock-back - but through effective, collaboration rehabilitation, she was able to fulfil her ambitions and now leads an independent life.

Here, brain injury rehabilitation specialist Reach reveals how its ‘light touch’ and early intervention - and key role in supporting the family within a rehabilitative process and working within a multi-disciplinary approach which included education and statutory services - delivered life-changing results Through a rehabilitation process being made into a positive experience, with meaningful and achievable goals and the engagement of family and education providers, Abbie has been able to rebuild her life beyond what was initially thought possible. Having been struck by a car while Abbie was a pedestrian, the 19-year-old was forced to pause her studies in beauty therapy amidst the ongoing consequences of her traumatic brain injury. She struggled with fatigue, had difficulties with cognitive processing and verbal information, experienced a reduction in concentration and all in addition to hearing problems. But through the engagement of brain injury rehabilitation specialist Reach, who devised a bespoke home-based programme to support her rehabilitation goals and recovery, Abbie has been able to complete a Foundation Degree and start her own business.

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Her talent has even seen her working on the hair and make-up in a video shoot for a well-known singer - a dream come true for Abbie, and something that seemed worlds away following her accident. But through Reach’s role in providing and teaching rehabilitation strategies to Abbie and her family, liaising with her college and later University, and working with her case manager in collaboration with the multi-disciplinary team, the outcome has been hugely positive and beyond expectations. And through less than four hours of input per month from Reach’s neuro occupational therapists, the nationally-renowned rehabilitation specialist is showing what can be achieved through quality engagement and carefully-planned and managed rehabilitation. “This was a great programme to be involved in, and we are delighted with the outcome for Abbie,” says Fiona, senior programme manager at Reach, which specialises in teaching and empowering people how to manage their own recovery. “Understanding the issues, collaborating with the family and client and listening to what they wanted was key. Being flexible and responsive is hugely important. “We were also able to play an effective role in collaborating with college and University and establishing a real therapeutic bond with the family. The family were fully invested in the rehabilitation and getting the best outcome for their daughter.” Reach initially met Abbie and her family three months after her injury, when the need for an effective home-based rehabilitation programme was identified by the case manager. Reach, which has supported brain injury survivors since 1995, identified an array of “significant yet subtle” difficulties, which would impact on her educational, vocational, social and leisure participation. Through the rehabilitation intervention of a personal programme assistant - who is

dedicated to reinforcing the rehabilitation strategies within a programme - alongside the support of senior programme manager, and neuro occupational therapist, Fiona. Working closely with Abbie and her family, Fiona was able to work with the case manager to ensure the appropriate rehabilitation was provided, while being mindful of the impact on the client, and being sure the pressure of the situation, and the demands of the many medical and therapeutic appointments, did not become too much. Crucially, Fiona was able to play two critical roles - firstly, in ensuring co-operation and collaboration with the case manager between therapists, overseeing them working to functional goals while balancing the time spent with Abbie to enable her fatigue to be properly managed. And also, through working with Abbie’s college to ensure her educational and day-to-day needs were met, giving her the freedom to live her life as a student while making appropriate provision for rehabilitative approaches to be there if and when needed. Abbie went on to complete her Level 2 college course in beauty therapy, going on to complete a University Foundation Degree in hair and make-up design. She was able to travel to college using public transport and also enjoyed a spell living in University halls of residence, living independently and enjoying her life as a student to the full. As well as working on a video shoot, Abbie also had a parttime job in a prestigious makeup store for professionals, further demonstrating her talent and commitment in building and pursuing her career. She now works part-time in her own make-up business and is living the meaningful life Abbie and her family

only dreamed may be possible, after the devastation of her injury. Abbie’s mother is fulsome in her praise for Fiona and Reach in her daughter’s recovery. "The rehabilitation work Reach provided for my daughter was exemplary,” she said. “The programme manager knew month to month exactly what my daughter needed and if it wasn’t within her remit she would find someone who could help. “I honestly believe I would not have got through these last years without her and my daughter would not be where she is today without Reach’s rehabilitation." Heather Batey, managing director of Reach who founded the business in 1995, said: “It was such a pleasure and a privilege to work with Abbie on her areas of deficit following her brain injury. “Building a great therapeutic relationship with both Abbie and her family, as well as educational processes, very early was a key element to the success of Abbie's reach rehab programme. “The fact that Abbie then progressed through education and ultimately onto independent living with minimal support is a huge testament to her drive and motivation and also to what reach Rehabilitation stands for and the optimal outcomes which we can achieve."

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The role of remote rehab in tackling the global healthcare backlog Dr Paul Rinne is CEO and co-founder of GripAble, a mobile assessment and training platform to enable home-based rehabilitation for people with a wide ra n g e o f n e u r o l o g i c a l a n d m u s c u l o s ke l et a l c o n d i t i o n s . With the demands of delivering care during a pandemic leading to significant backlogs in healthcare across the world, Paul explains the urgent need for and - potential of – a hybrid, digitally driven, pathway of care, and the opportunity GripAble provides to therapists who need to engage their patients in rehab remotely.

Pandemic backlog Patients with physical and cognitive impairments require guided therapy to improve their quality of life. Simply put, the more rehab they do and the more they adhere to professional guidance, the greater their chances of having better outcomes, with a wealth of evidence backing this up. However, due to resource costs and poor logistics, current health systems cannot deliver the amount of therapy needed, with significant backlogs, and few patients receiving anywhere near what they require

to improve their quality of life. This is a common problem faced by hundreds of millions of patients around the world, with demand for treatment outstripping capacity even before Covid-19. Inefficient care pathways are not only costing health systems hundreds of billions of dollars every year but costing people the chance to live their lives to their full potential. Prior to the pandemic in the UK (February 2020), there were already 4.43 million people on a waiting list for care. At the start of the pandemic, the number of people joining waiting lists initially dropped, but has since been rising. The latest figures for February 2022 show a record of over 6.1 million people waiting for treatment.* This doesn’t include the growing ‘hidden backlog’ of people that require care but have either not yet presented, or who have had referrals cancelled.

Indeed, the COVID-19 lockdowns resulted in many patients being isolated at home, unable to attend therapy appointments and some unable to access emergency treatment, increasing the risk of disability. Not only this, but the increased risk of stroke post-COVID and the need for physical rehabilitation amongst COVID survivors, means that a tsunami of disability could be coming, if digital pathways to support therapy are not implemented quickly enough.

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Uptake of digital technology The uptake of digital technology in healthcare, which has to date been very slow, has been forced to fast-track as a direct result of the pandemic. The world has moved on, driving changes in technology which will shape the delivery of healthcare in the UK. Significant advances have been made in areas such as telehealth and digital health to deliver immediate care to patients unable to attend inperson appointments. Mobile is driving the increased technology adoption we are seeing, with therapists now being able to use platforms like GripAble to translate their services and expertise to the home environment. This is a crucial development as, for many years, therapists have struggled to find the appropriate tools that can engage their patients in rehab, allow for greater efficiency in their workflow, and track outcomes remotely. However, if technology is developed without careful consideration of delivery and adoption, it can be difficult for therapists and patients to implement and adopt and present further hurdles. Technology for rehabilitation must fit in seamlessly with the clinical pathway, allow for truly independent use, and be scalable and accessible. For those returning home from hospital, technology that aids this transition is vital.

Facilitating remote rehab There are currently six million people across the UK living with upper limb disability, and 384 million people worldwide. Physical rehabilitation is critical for people to restore quality of life after suffering a stroke, or the onset of many other neurological and orthopaedic conditions. Studies show that repetitive, task-directed exercises can improve long-term upper limb recovery, making this a key component of occupational therapy and physiotherapy following a stroke. However, as I have mentioned, this level of therapy can be difficult to implement and deliver due to resource constraints within healthcare settings, as well as the range of challenges faced by stroke survivors during their recovery.

But the advent of remote and telerehab devices has created the opportunity for high volumes of gold-standard, efficient and personalised therapy to be delivered to patients across the world, from hospital to home, making outcomedriven care scalable and accessible to all. At the cutting edge of occupational and physical therapy, GripAble is a smart mobile assessment and training platform to help people work on their hand and arm movement and grip strength. At the heart of its design is turning the rehab grind into fun, by training core hand movements in an engaging, gamified way to help people along the journey of restored ability. Over the last seven years, GripAble has been tested and developed in partnership with thousands of occupational therapists and physiotherapists and patients across multiple clinical conditions and leading academic institutions including Imperial College London and within Imperial Healthcare NHS Trust. The platform is unique in the way it provides therapists, and patients of all ages, the ability and transparency to track and assess progress. GripAble’s unique handgrip captures data that allows for highly accurate monitoring for therapists when compared to more traditional devices such as hydraulic dynamometers, foam balls and putty. In a clinical trial of 30 patients, researchers from Imperial College London, the University of Southampton and Imperial College Healthcare NHS Trust found that GripAble enabled on average 104 upper limb repetitions per day whereas conventional therapy achieved 15 upper limb repetitions per day. The study, which was funded by NIHR Imperial Biomedical Research Centre (BRC) and published in Neurorehabilitation & Neural Repair, is the first to show that a digital rehabilitation platform – GripAble - can achieve significant increases in the amount of exercise patients do compared to supervised therapy only. The findings suggest that a significant proportion of stroke survivors may potentially benefit from GripAble alongside conventional therapy. This could improve patient outcomes

References *British Medical Association (BMA) NHS backlog data analysis

as well as ease pressure on global healthcare systems in terms of infrastructure and resources.

Home-based clinic As a full-stack solution, with bespoke-built mobile hardware, software and data services, GripAble provides a platform for further homebased technological advances. Add-ons are already in development for whole body rehabilitation, and we are working with big pharma to support drug development for people living with upper limb impairment. With investment backing, GripAble is ideally positioned to deliver end-to-end patient care and connect millions to their own personal home-based clinic. GripAble has the unique opportunity to be used by every single person coming into contact with the healthcare system globally, measuring and recording grip strength from early childhood until end-of-life care. By empowering patients and therapists through remote rehab, GripAble has the ability to not only change the face of physical rehabilitation, but also of the global healthcare sector in general, helping to tackle the backlog in care and allowing more people to access the therapy they need.

About GripAble GripAble is a London based start-up digitising rehabilitation from hospital to home. GripAble’s digital platform, which includes bespoke hand-held sensors, mobile hardware, software, in-built gamification and data services, enables home-based rehabilitation, allowing more patients to access gold standard care from professional therapists for longer periods, driving improved outcomes while decreasing the burden on healthcare systems. GripAble is delivering a full range of services to nearly 1,000 customers, and has already achieved considerable neurological, musculoskeletal, and paediatric care provider adoption across NHS and private healthcare. As a result, GripAble has established itself as the leading technology in the upper limb remote-rehab space. For more information, visit: www.gripable.co

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As AKA Case Management marks its 20th anniversary, the business - which prides itself on doing things differently continues to do just that as it looks to the years ahead.

Looking to the future while staying true to its values 54

NR Times learns more about AKA’s values, its approach, and why its sector-leading adoption of the four-day working week is reaping rewards for staff and clients alike Since its inception in 2002, AKA Case Management has grown to become one of the best known case management companies in the sector, with a reputation for supporting clients and their families to rebuild their lives after catastrophic injury, and investing in the development of its team to ensure their wellbeing and ability to deliver the best possible service. And as the business enters its third decade, marking its milestone 20th anniversary on June 19, these core values continue to remain central to all AKA does. While it changed hands last year in a management buyout (MBO), which saw founder Angela Kerr hand over the reins to directors Dawn Abernethy and Andrew Rose, there has been a distinct lack of seismic change - rather a commitment to carry on with developing the business in the client and staff-focused manner for which AKA is known.

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Its recent anniversary celebration was indicative of that, with a fun day culminating with an It’s A Knockout-style event providing the forum for staff and clients alike to socialise and enjoy themselves together, further strengthening the relationships that exist. “We want to make sure that what we do is good and that what we do for everybody is good,” says Andrew. “We want to be a good place to work, which provides good quality services to our clients. “We're not focused on becoming the biggest case management company, because the biggest doesn't mean you're the best we'll do what's right for us, our employees and our clients.” “It’s definitely about quality, trust and transparency, they are values at the heart of everything we do,” says Dawn. “One of the things we’ve learned is that we implicitly trust all of our team, and they truly trust us too. None of this could work without that.” Dominic Hobdell, who heads operations and finance at AKA, says: “I think our fun day really spoke volumes about what we’re about, people came along and just enjoyed themselves. “We all just had a great time together. It was about everybody, staff and clients, and people left saying what a brilliant day it had been. That’s our culture, it’s very inclusive, and we’re proud of that.” Andrew adds: “I think, going forward, it’s important that we remain at the forefront of innovation in the sector, and to model that. We are happy to lead the way, and if people want to watch us and follow, then that’s great.” One area in which AKA truly is leading the way is in its introduction of the four-day week for staff. Launched in its 20th anniversary month as part of a UK-wide trial encompassing businesses from a host of sectors, the four day week - which sees staff paid 100 per cent of their salary for 80 per cent working time - is seen as a particularly forward-l ooking approach. For Andrew and Dawn, given AKA’s commitment to staff and clients and to embracing positive change, its adoption was not a difficult decision, and its implementation is being done in co-operation with the whole team. “We genuinely want our people to be happy, and if they are, then our clients will get the best out of their life through getting the best out of us,” says Andrew. “Through the four-day week, it’s acknowledging that we need to look after ourselves, and taking the action to support that. “For so many years, we’ve all been attending events and training that talks about self care, but then most companies say ‘Yes, but you’ve got to be available for your clients’. But those two things don’t work in balance - how can you be available to your clients 24/7 and also find the time to look after yourself? “Case managers, as everyone does, need time to replenish themselves. Whether that’s doing yoga, reading a book, taking some time for them - whatever it means to them to take some time out, that’s what their day off every week is aimed at.” “We are committed to focusing on what's best for the client, or what's best for our staff, but also I think working a four-day week is quite an uncommon thing, especially for a company in the care industry,” says Dominic. “So as well as realising it was a great thing to do, I think the fact

it was that bit different made us want to do it even more.” Dawn says: “Of course, some of our team did have concerns because they do try to be available for clients as much as possible, but we try and do things differently and find solutions to problems, so have been able to address this. “Over the weeks leading up to the four-day week trial, our team did a series of workshops and learned various techniques for productivity, such as giving people permission to turn off Teams while working on a task so they can focus, being less responsive to emails for periods, making sure they are only working on one thing at a time. “This is something we’ve all contributed to and have given people the freedom to choose what works for them.” “Everything we're doing is research and evidence-based,” continues Andrew. “What we are doing with working practices and wellbeing is all clinical best practice. ‘We're not corporate, we’re not driven by profit, we want to run a successful business which helps to reward our employees and treat them well. “And actually, if you look at the period our trial has covered so far - including the Jubilee Bank Holiday weekend and BABICM Conference - the figures so far are looking pretty good. “So if this makes good business sense, as well as ensuring the wellbeing of our staff and supporting the service we can offer to clients, then that’s great. “I think the only slightly scary part of it was when we heard the statistic that every six years, we'll have given someone a year off. That was quite eye-opening!” Going forward, Andrew and Dawn will continue to add new people to the business as part of its ongoing growth, but are adamant the foundations of AKA’s reputation and the values behind that will remain as they always have. “There isn’t a hierarchy here, it’s about everybody, everybody contributes and has their part to play - AKA isn’t Dawn and I, it’s all of us,” says Andrew. “What Angela achieved was great, and we are where we are because of that, but we are taking it forward and doing things the way Dawn and I do, without losing any of what makes us, and has always made us, AKA.” Dawn adds: “AKA is everybody, our team and our clients. Our celebration event showed that, we’re all in it together and without the people doing everything they do, none of this would happen.”

Left-right: Director Andrew Rose, Director Dawn Abernethy, Operations & Finance Officer Dominic Hobdell

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"I would just like to say thank you for a lovely day, and the none stop laughing. The venue, entertainment and food were all outstanding."

Mel Smith, who joined AK A almost 18 years ago What are the positives about working at AKA? The company is well lead and very supportive. Due to the nature of our work, every day can be different. AKA’s vision and values are always adhered to throughout the company and we ensure clients needs are met. Why do you think AKA stands out? AKA has a very friendly feel to it while maintaining professionalism, the people who work for AKA go above and beyond for the client. Nothing is too much trouble. What about the service you deliver to clients? The service we deliver is to enable the client to regain as much of their independence as possible and to ensure that they have a fulfilled life. The case manager will lead the collaborative process of assessment, planning, facilitation and care coordination, while ensuring the clients’ needs are at the centre of the process. Is the team well supported, as well as the clients? Absolutely, by management and colleagues. How much of a positive is the four-day week for you and your life away from work? Working a four-day week has allowed me to focus on myself more, when working five days a week, from at least 9am to 5pm, there is not much time for you. I feel much happier in myself, less stressed and feel more focused.

"We had a great time at AKA Case Management’s 20th anniversary celebrations. Lots of fun and lovely people. Many thanks to all who organised it."

" I just wanted to say how brilliant I thought the AKA event this week was. As you know I was supporting a client and she seemed to thoroughly enjoy the event (especially the band who were brilliant). All of the client's family were singing the praises of AKA and how well done the entertainment etc was. I know how difficult a day like that can be to organise and I wasn't sure who to pass this on to, but I thought it was brilliant. Also good to see so many staff and families taking part in it's A Knockout!"

Jo Sims, who has been with AK A for almost nine years What are the positives about working at AKA? There are so many! We’re a close team who truly care for each other, AKA has always had ‘family’ feel to it and working here has been a breath of fresh air for me. I’ve never stayed in a job role this long before. I can’t see me ever leaving AKA. Why do you think AKA stands out? We are care for each other as well as we care for our clients. What about the service you deliver to clients? We support our brain injured / catastrophic injured clients to reach their rehabilitation potential by working collaboratively with other rehabilitation professionals. Is the team well supported, as well as the clients? Absolutely. I have never been so well supported in the workplace as I’ve been at AKA How much of a positive is the four-day week for you and your life away from work? It feels like a dream to be honest! A full day just for me! AKA signing up to the four-day week has made us feel even more valued than we felt before.

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"It was so lovely to be a part of your celebrations yesterday! Thank you so much for the invite and all the fab entertainment and food, it was a great way to spend Sunday. I hope all went well from your perspective and it’s a knockout passed without incident."

"Thank you everyone for such a lovely day yesterday it was so nice and there was no pressure just a really lovely, good day, excellent fun seeing Claire and Mel going A over T on the inflatables and that the goodie bags were great – a big thanks to everyone."

Why do you think AKA stands out? I believe AKA stands out for the support we provide to all our staff and clients to fulfil their goals and live their best life after a brain injury. AKA has fantastic visions and values which all our staff strive to maintain.

Claire Rhodes-Andrews, who has been with AK A since 2009 What are the positives about working at AKA? The support network comprises directors to managers to support staff, AKA encourages me to face any fears and supports me through them, drives and motivates me to achieve my purpose and goals in life, AKA values me as a person as well as for my work.

What about the service you deliver to clients? We provide the support and rehabilitation for our clients to live their life to the full. One example is a client in Portugal who has SP, we visited the dolphin park with another client who went swimming with the dolphins, due to my client's condition he was unable to swim with the dolphins so I asked the staff if he could stroke and touch the dolphins. We went backstage and I supported my client out of his wheelchair and he sat on the side of the pool, three dolphins can up to my client. He lay down at the side of the pool and

"Following an outstanding day and the huge success of your celebrations I just wanted to send you a quick note. What a joy to see everyone joining in - clients, their families, AKA colleagues, their families and all the wonderful entertainers, food vendors and support- the day had something for everyone . Lots of tired legs from the little ones who just didn’t stop running all day!! Again, thank you for inviting me to join you in your celebrations and I cannot wait to see all the images on social media and your newsletter. Here’s to the next 20 years - many congratulations again to you all."

stroked the dolphins, which he never thought would be possible. I have many more amazing stories but this one always stands out for what our clients can achieve with support and vision. Is the team well supported, as well as the clients? Our teams are very well supported by management, we have regular supervisions between six and 12 weeks and we are alway only a phone call away. How much of a positive is the four-day week for you and your life away from work? The trial is having a fantastic effect on my work/life balance and efforts to spend time with my family. All companies should try this for their workers, I'm more productive Monday to Thursday to ensure my clients still receive all support needed.

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30 YEARS of TRU Rehabilitation

For the past 30 years, TRU Rehabilitation has been supporting brain injury survivors to discover their hidden potential, achieving outcomes that often previously seemed impossible.

For more information call 01942 707000, email enquiries@trurehab.com or visit our website www.trurehab.com

Having grown from a single site in 1992, TRU now has six rehabilitation units, delivering support for clients from around the country, ranging from those detained under the Mental Health Act through to those ready for community reintegration. Its units, all within a six-mile radius, offer the full support of TRU’s in-house brain injury specialist multi-disciplinary team - comprising neuropsychologists, neuropsychiatrists, physiotherapists, occupational therapists and speech and language therapists - as well as counsellors, nurses, rehab assistants and cognitive rehabilitation coaches. This is also supported by a community outreach pathway for people within a 50-mile radius of TRU’s St Helen’s headquarters, giving an opportunity to develop long-term support for service users in their own homes. Delivering specialist and effective acquired brain injury (ABI) support for three decades, TRU’s holistic approach to rehab, and combination of clinical support with vocational opportunities, have seen clients regularly surpass all expectations. And through TRU’s bespoke, person-centred approach to every client’s rehabilitation, and the ability for them to join at any stage of their journey - whether that is months or years post-injury - the difference they are making in unlocking unknown potential is vast. “We have a model, but we work on the basis of how that fits best for the person, rather than how the person fits into the model,” explains clinical psychologist Dr Leanne Daniels. “We approach patient goal-setting in a gradual, achievable way, with smart goals and a goal

attainment scaling framework. “But it’s also about acknowledging that, if someone progresses through their programme and has achieved lots of goals and looks like they’re doing really well, there might be time when clinical expertise needs to come back in - this happens in life, and while there may be setbacks along the way, we will build on the potential and the gains the client has made and keep going.” And through the dedication of the team across TRU’s centres - its complex mental and physical support sites The Newton, The Willows and The Lowton; neurobehavioural pathway Lyme House, community integration pathway Chapel House and supported living environment Ashton Cross the gains made by clients can be significant. Recently, one older client, who has been with TRU for many years, has rebuilt a relationship with his family that has been missing for 25 years. “This has been amazing for him. It’s about not accepting things are always going to be as they are,” says Dr Daniels. “It shows the support our team deliver and the impact our counsellors and family services specialists can have. It’s a ‘trickle, trickle’ effect sometimes, and you do get somewhere. “It shows you that you should never say never.” The progress seen in patients under the Mental Health Act can also be vast. “We've got plenty of examples of clients who may well have been stuck in that system lifelong,” says Dr Daniels. “There are people who have been in secure services in a locked ward for many, many years, who then work through a transitional pathway to living in a unit with some access.

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“You see the family relationships developing, and they’ll build up to maybe a weekend at home every six weeks when haven't been home for 10 years. That kind of thing is huge.” And it is TRU’s holistic approach that lies at the root, says Dr Daniels, who has been with TRU for 12 years. “I think through working together as a holistic team of clinicians, rehab co-ordinators and coaches, all driving that forward, this can mean the client often becomes a driving force in that too,” she says. “We focus on coaching and developing that relationship with the client, the therapeutic relationship between coaches and clients is a really key ingredient in our progress. “We take things slowly, so that brain injury rehabilitation can truly be about absorbing those skills, strategies and processes and employing them in everyday life. “We have a really well-established pathway, which people can enter at any stage, but that’s why our assessment process is really important and very thorough. “You could have 10 clients in a room with very different needs, and that's why the coaching model is really important, alongside the individualised approach to the programme. “It’s about enabling people who aren't quite functioning as well - whether that's physically, cognitively or psychologically - or trying to bridge those gaps so that the person is facilitated to have the best session possible “If someone can only tolerate a 10-minute session, then that’s what we’ll do, and we will build on that. And that’s how we get the results. “I have one client who, prior to when I assessed him and he came to TRU, he was literally in a bed in a bedroom all day and had been for a very long time. “Now, he’s been here for a couple of years and is out in a social environment for approximately six-and-a-half hours a day. He chats to people who pass by, we’ve got him playing cards, it’s fantastic to see the progress he has made. “You’d never get him on a vocational placement, but at TRU, we realise everyone is different and everyone’s rehab is different.” The success of TRU’s vocational offering is well known, with its array of activities comprising everything from woodwork and art, to drama and education, with younger clients in particular being able to pursue college courses if they wish. “Our vocational opportunities are a really big part of the jigsaw,” says Dr Daniels. “Sometimes, clients may be 15 years down the line in the rehab process, they’ve done all the therapies, but there are still gains to be made. “You can develop a clinical programme that

isn't experienced in that clinical kind of way and can really build upon those areas of functional, physical independence and the scale through the vocational work. “Through our vocational programme, this can help to give them that bit of experience, self esteem, confidence, self sense of mastery, to then start dipping their toe outside. “Through getting the ongoing positive feedback, and building up these skills, that can help them get back into the community, or perhaps go back to where they live. “We see some amazing talents, and I remember one client in a woodwork class bringing a birdhouse over to me, and it was more like a bird mansion! “The level of detail and the intricacy showed her capabilities, and this allowed her to be as creative as possible. We could make it individual and bespoke to her, which is the beauty of it.” Vocational activities are also flexible enough to give clients of all abilities the opportunities to participate, says Dr Daniels. “It can be offered to our clients at many different levels,” she says. “There are some clients who are so high functioning, you wouldn't have a clue that they had a brain injury, but they need to have a focus and the support that can't be achieved in the real world, but that environment can almost be ‘manufactured’ in this world. “But then, for all the people who make bird mansions and these amazing French polished tables and doors, you will have people who can only do the painting or a bit of sanding. “But it's not just about making something that's functional and nice, it’s integrating the

therapies through vocational rehab. And this can have its own effect for everyone.” Community reintegration is the end goal for the vast majority of clients, with TRU’s pathway enabling a means for that to happen by progressing ultimately towards the return home. “Our community unit is in a lovely, quaint village and there’s a corner shop, an ice cream parlour, a park, a couple of bars, bus stops - many of the places you’d want to visit in living your life,” says Dr Daniels. “Practice in as many social environments as possible is important in this process. For some of our clients with frontal lobe difficulties and dysexecutive functioning problems, that can impinge on them fully reintegrating into society, because the niggles can eventually develop into bigger problems. “But while we’re promoting independence, we’re acknowledging that as human beings, we are interdependent. “Voluntary placements are also important and we have growing links with the local community and wider communities. We’ve done things like where a gentleman who really loved outdoors and needed lots of physical exercise was linked up with local canal service, and he would go out and work on the canals voluntarily. “We make everything as person-centred as we can wherever possible, and constantly develop what we do and what we can offer, and that will continue. “TRU is built on the core values and philosophy of rehab and doing the very best we can for each and every client, and that will always remain at the centre of what we do.”

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Extending Askham’s renowned rehab into the community Through the creation of an outpatient service, Askham Rehab is offering its life-changing therapy and neuro-rehab support to non-residents for the first time. NR Times learns more

As a renowned neuro-rehabilitation provider, delivering life-changing outcomes to residents through its person-centred approach, Askham Rehab is now launching an outpatient service to extend access to its sector-leading expertise and resources to the wider community. Askham Rehab has become known for the strength of its work in neuro-rehab, supporting people from around the country - who come to the Cambridgeshire centre through its reputation and capability - to rebuild their lives after illness or injury and return home to their families. Its provision for residents includes robotics - with five pieces of equipment bought during COVID-19 lockdown to enable their rehab to progress and even increase - and a hydrotherapy pool, which, alongside the work of the therapy team, are seen as being key in Askham delivering the outcomes it does. But now, for the first time, its resources are also available to those living in the area around its site in Doddington, with people able to visit for their full array of therapies, delivered by Askham’s on-site multi-disciplinary team, and then return to their own home afterwards.

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And to help deliver its new outpatient service, Askham is adding further to its team, with a number of new therapists set to help meet the strong demand. The move into outpatient work comes at a particularly significant time as the world continues to recover from the COVID-19 lockdowns, during which many people relying on neuro-rehab in the community saw their support paused or withdrawn and progress lost. For Aliyyah-Begum Nasser, director of Askham Rehab - which, as part of Askham Village Community, has been a central part of local life for over 30 years - the fact support can be offered more widely is hugely important. “We have had many enquiries over the years about outpatient work, to which we’ve always had to say no, but now we will be able to welcome those who need us to come in and access our therapy and neuro-rehab support,” she says. “This will be very positive for the individual, but I think it will also be of great benefit to our residents as part of their group therapy sessions, where we allow residents to mix with outpatients in a safe way. The social interaction will be really important. “One of our core values is community, and we are committed to ensuring people can integrate from all walks of life - but more recently, we have experienced distance, separation and isolation. “From my perspective as a director and non-clinician, I’m always amazed when I see people arriving at Askham and coming out of the other side in a better place, supported by the work of our amazing therapy team. It is great to have the opportunity to offer this to even more people now.

“Now we are really excited to be able to push forward with our outpatient plans and to bring people in to create even more of a community.” The timing of the outpatient service, while planned for many years, comes at a point where resources are significantly under pressure trying to meet the COVID-19 backlog - so access to Askham’s resources is particularly timely. “I suspect that during COVID, many people have not been able to get the access to neuro-rehab they need, and may have gone backwards in their ability levels and independence,” says Aliyyah. “So we hope that by opening up Askham, we can help to regain some of the lost time and progress and really make a difference. “This has been planned since pre-COVID, but when that hit, our priority was the residents who lived at Askham and keeping them safe it was not the time to launch a new service, or to increase the risk by anyone new coming into Askham, as much as we wanted to extend our support to those people who we knew were missing out. “We have watched the guidance change and evolve, while maintaining appropriate safety measures, and we felt now is the time to launch. We can work safely while managing distancing, cleaning and other safety measures, and being able to offer the levels of service we pride ourselves on. “It’s very exciting that we can share the expertise and resources we have and extend that to another group of people, particularly during such an important time in neurorehab provision.” For over a decade, Askham has built its dedicated neuro-rehab provision, supported by significant capability and resources to support

residents’ progress. The addition of the robotic equipment during the pandemic - financed by a £50,000 grant from the Cambridge Mayoral Authority and match-funded by the directors at Askham - added further to the therapies already delivered at Askham, introducing the enormous potential of robotic rehab tech into its portfolio. The robotics are believed to be the only resources of their kind in the East of England, combining with the hydrotherapy pool to deliver a sought-after neuro-rehab offering. Access to such a comprehensive offering is something Aliyyah believes will help outpatients, like residents, to achieve strong progress. “We have continued to invest in our therapy services and we are now a place where you can come for all your therapies, be that to see your speech and language therapist, occupational therapist, or to use the gym or the hydrotherapy pool,” she says. “Therapists of course can and do communicate between sites, but to have everything on one site makes that communication much more in-depth and valuable. “Rehab is our bread and butter, we are very proud of the outcomes our residents achieve. I am confident our outpatients will see strong progress too and for our support to have a tangible impact. “While they won’t have the 24/7 holistic rehab our residents receive, they will certainly get the same very focused, person-centred rehab that is tailored to their needs and supports them to meet their rehab goals.” Recruitment is also underway to support Askham’s plans for its outpatient service, to help meet the growing levels of demand from the local community. “We want to be able to support as many people as we can, while continuing to provide the quality of service Askham is known for and prides itself on,” says Aliyyah. “We are proactively recruiting specialist therapists, but we also train up care staff internally into rehab assistants, who then work in areas including physio and occupational therapy. “Working in rehab is such a great opportunity to be part of someone’s journey which, for the most part, is about progression and improvement and to support them in that is a privilege, and a totally different experience and type of interaction to working in traditional care. “We are looking to bring in a number of new people and are always keen to hear from anyone who would like to be part of what we do.”

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Asking the questions that matter for patients:

Collaboration and feedback in Neurobehavioural research and rehabilitation

When empirical research is conducted in partnership with those involved in clinical practice, with both parties sharing knowledge, experience and contributing to a truly collaborative programme of work, then there is greater potential to make a positive difference to the lives of patients. As part of Elysium Healthcare’s commitment to share best practice and facilitate collaboration, Dr Claire Williams, Associate Professor in the School of Psychology at Swansea University, was appointed Honorary Senior Research Fellow with Elysium and now plays a vital role in encouraging collaboration to improve outcomes for patients. With research interests in neurobehavioural disability, emotional processing and regulation, and how individuals with brain injury are evaluated within the criminal justice system, Dr Williams

has developed specialist tools for use in brain injury research, assessment and rehabilitation, including the ‘St Andrew’s – Swansea Neurobehavioural Outcome Scale’ (SASNOS). Available in seven languages and used on an international scale in at least 18 countries, the SASNOS provides health professionals with a unique basis for treatment planning and evaluation, allowing rapid identification of rehabilitative goals and detection of meaningful change. Put simply, SASNOS is helping services to achieve better outcomes for their patients than would otherwise have been the case. In this EveryExpert article, we discuss the benefits of collaboration with Dr Williams, and why gathering feedback and asking research questions that matter to patients and clinical practice is so important.

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Hi Claire, thanks for joining us today. Let's start by talking about your role as Honorary Senior Research Fellow with Elysium Healthcare. Can you tell us a bit more about the role and what it entails? A big focus of my role is to work collaboratively with health professionals within Elysium Healthcare and to support the integration of research into clinical care. The goal of this collaboration is to drive evidence-based improvements in treatment and care options. A key part of that is to develop, design, undertake, and to advance research. So that means to identify research questions, develop the appropriate methods to undertake research, contribute to the analysis, interpretation, and evaluation of clinical research, and to also produce high quality impact research outputs, which can then be disseminated amongst the clinical team, but also to wider clinical and academic communities. It's also about creating opportunities to co-facilitate and contribute to education, training and continuing professional development as well. All of these opportunities are used to share best practice and to share advancements in the field.

And that is the fantastic thing about a really collaborative approach - when people from diverse areas with different perspectives, skills and levels of expertise come together - there is real potential to improve treatment and care outcomes. You can evaluate existing approaches, develop new interventions or new strategies, and it’s an environment where you can learn from one another.

Could you give an example of how that works or what that looks like? A good example of this collaborative approach is the annual conference run by Swansea University and Elysium Healthcare, which brings together leading experts in acquired brain injury to present the latest innovations in clinical practice and delivery. We typically have a real mix of presenters, delegates and exhibitors, who are all involved in the care and support of individuals with brain injury and/ or or are part of research teams. And, as I’ve mentioned, there are so many benefits to that type of learning environment.

It sounds like a fascinating event, can you say a bit more about why it benefits people to participate or hear about the latest research? Often an advancement in a very specific area of neurological support will be used in isolation initially, in the area that it specifically relates to. But that advancement may have value or potential to be used in other areas. However, without sharing research across specialities, or across different treatment areas and teams, we won’t know what is possible. It's not about reinventing the wheel as such, but rather it’s about sharing the knowledge and seeing how that can be applied to improve outcomes for patients. In this way, we make much more efficient use of research and knowledge to support patients. So, the more people who participate in and share research, and also hear about research and newly developed approaches, the more potential benefits there are.

So ultimately the biggest benefit is for the patient, the person receiving the care that the research informs? Exactly, and it might be easier to give a tangible example here. I’ve worked in collaboration with Professor Nick Alderman, Clinical Director, Neurobehavioural Rehabilitation Services & Head of Psychology at Elysium Neurological Services, in the development of specialist tools for helping

clinicians on the ground to assess and measure, what I would say is perhaps often the less measurable but more disabling aspects of acquired brain injury. “We know that neurobehavioural disability arising from acquired brain injury presents a major obstacle to psychosocial recovery, is associated with reduced quality of life, acts as a barrier to recovery, and contributes to poor engagement in rehabilitation. However, feedback from medical and health professionals on the ground was that there was a lack of reliable and sensitive assessment tools to help detect and monitor change in symptoms of neurobehavioural disability. So, by being able to collaborate with and receive feedback from health professionals, we understood that there was a significant gap in clinical practice – a gap that we could seek to address via a programme of research work. This is an example of when collaboration and feedback shapes research, and from this, we went on to develop the SASNOS – a tool that we have continued to collaboratively refine and evaluate since its creation. It benefits patients because those less measurable but more disabling aspects are being identified and being detected, and from there you can then better inform treatment and rehabilitation plans. You can then monitor progress throughout a patient’s journey, and you can also adjust plans in light of progress made.

How do you collect feedback from therapists and clinicians? Traditionally you might get feedback from colleagues on the ground or perhaps a passer-by happens to mention it at a conference. However, we’ve taken quite a proactive approach to gathering feedback. We’ve always maintained a registered list of users of the SASNOS tool, and we routinely contact them to ask them for their feedback in a more structured way, such as via online questionnaires and feedback surveys. We ask them what's working, or if there is anything that's not working or could be improved. We ask them to let us know what they would like to see in a new development, or what needs are met? Or are there any unmet needs? How are you currently using it and for what purposes and in what contexts? We gather their feedback and suggestions on tweaks we can make and to inform further developments of the tool. In a nutshell, we proactively gather feedback to ensure the tool is meeting needs on the ground and is supporting patient care.

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benefit? Again, and it goes back to the fact that in terms of my research in this area, I am motivated by the want and the desire to make a difference to those who have been affected by acquired brain injury. It's always at the forefront of my mind - yes you can ask really interesting questions and advance knowledge, but there needs to be some tangible way that it could potentially have an impact on individuals or society or a service. It needs to be translatable to make a difference.

And have you ever encountered any obstacles with this approach?

Do you have a specific example of how feedback has influenced the development of the SASNOS?

So what you’re saying is that research must be relevant to those providing care, to improve the outcome for the patient?

Yes, there are a few. One example is that we received feedback concerning the tools ability to monitor change over time, and that instigated a programme of work for us where we examined the responsiveness of SASNOS - its ability to detect change during rehabilitation and when change has occurred. As other examples, clinicians have asked whether a self and patient-rated version of SASNOS could be developed, and we responded to this need. Others asked whether there were plans to make the tool available in other languages, and it’s now available in seven. Basically, feedback is important, and it has really helped shape and develop the tool and our research.

Yes, absolutely. As a researcher you need to identify the key issues and the priority areas, and those that have potential to have the biggest and most positive impact on care and the patient. You need to make sure that any research that you conduct is geared towards making a difference on the ground and then in turn, it will hopefully benefit patients and care pathways. And this comes back to why we actually collaborate in the first place - to really address questions which matter on the ground. So as a researcher, collaboration helps you to identify questions that matter, or gaps in clinical practice that could be addressed. So actually, that's an example of where there's no point in being in a silo as a researcher, because it may well turn out not to be as useful as it could have been if you had worked collaboratively with others and those who may benefit from it.

Have you found an open response from the people you’ve contacted? Do they want to be involved in the feedback process? Yes. In general, we’ve always had a really good response to any of the feedback type surveys that we’ve run, and our collaborative research more generally. And I think that ultimately, well - what makes a difference, is that they can see there’s a potential value to their work. It's something they use, they're engaged with it, and it is relevant to them and how they support those with brain injury. So they're already really invested in these types of topics. And again, that's why you have to collaborate, because otherwise you’re conducting research in a silo almost. It might be excellent research, but you’re not getting it to the people who could use it or need it.

And that’s something that always shapes how you work? Yes absolutely, and I believe this approach must be front and centre of research, right from the very start when you are contemplating your research questions. This has become ingrained in me - with the type of researcher that I want to be. You have to ask the questions that matter to patients and their treatment. So whenever I am thinking about a new project, the key question I always ask myself is why. Why is this important, and why might it be of

There are sometimes tensions, of course. As researchers we might become interested in an empirical research question or a particular line of investigation, but then it isn’t immediately relevant to clinicians because it doesn't help them with a presenting problem that they have right then, or they can’t quite see how it would translate. But sometimes the empirical research does come first as we have to understand something more before we can look at how it can be applied practically. So it is not always in a straight forward order - there are ebbs and flows about what takes priority, and again - that’s why collaboration is so vital and why we should always ask - why does it matter?

So in one way you can’t have one without the other – the empirical research can inform practice and practice can also inform research? Yes, it’s a bidirectional relationship for sure, and by working together you end up with much more profitable research questions to begin with and much more advanced programmes of work, where you know you're asking a sensible question or you’re trying to address a problem in a sensible and meaningful way. Indeed, as a clinically applied researcher rather than clinician, I absolutely need to have that clinical partnership to help link my empirical research with practice.” But equally it works in reverse, and it’s not uncommon for services and health professionals to want to evaluate the effectiveness of something they’re doing. However, they might not necessarily have the research expertise or perhaps the time or infrastructure to do that. So that's where researchers come in and where it's mutually beneficial – working together achieves so much more. Get the latest insights, blogs and news from Elysium Neurological over on their EveryExpert thought leadership hub: www.elysiumhealthcare.co.uk/neurological/ every-expert

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Placing trauma at the heart of neuro-rehab

From a realisation that case management needed more focus on emotional rehabilitation, particularly with regard to client trauma, Psychworks Associates was born. NR Times meets the founders of the fastgrowing venture and learns how their desire for change extends beyond neuro-rehab and into their passions of diversity and sustainability. Through recognising a lack of focus on emotional responses experienced by clients among case managers working with clients with life-changing injuries, Dr Shabnam BerryKhan established a business that continues to push for positive change within the neurorehab sector. Having moved into case management in 2010, clinical psychologist Shabnam quickly identified that the variety from her doctorate level clinical skills were being used even outside of the boundaries of treating therapy, and were hugely relevant to supporting clients in their everyday lives - but this was not a view shared by everyone. “My experience was - certainly back then,

when case management was still finding its feet in terms of holistic support - that it was medically-driven in the main, with physical rehabilitation goals as the main focus. The concept of understanding trauma and how that actually gets in the way of rehab seemed to be missing to me,” she recalls. “For a long time, I thought ‘Am I missing a trick here? Have I missed out on where trauma has been talked about for clients, family and care/therapy teams, or where we address the concept of adjustment and think about the grief journey systemically?’ “I remember a senior case manager saying to me ‘What can a psychologist really do to help a two-year-old with brain injury?’ I was honestly speechless. “But while there were some people who just didn’t get it, others did, and I got a bit more confidence to talk more about what I knew.

It did seem to resonate with solicitors and case managers, and I started getting referrals.” And from there, PsychWorks Associates was born - a unique and brave medico-legal focused business which delivers treating psychology services and case management support to serious and catastrophically injured clients, as well as training to personal injury lawyers and those working within a InterDisciplinary Team (IDT). The fast-growing venture, run by Shabnam and husband Gabriel, has become an established presence in London and the South East since its foundation in 2014, and is seeing ongoing expansion across the country. But with its growth comes responsibility, and its values of sustainability and diversity are central to the PsychWorks Associates operation. And at the heart of its service delivery is the focus on trauma, to actively challenge the situation Shabnam faced and make positive difference to clients’ rehabilitation experience and the impact professionals and the IDT can make. “We are all about focusing on the trauma, for both the client and their family, and how that then looks to the professional network supporting them,” she says. “The family involvement is hugely important, and it doesn’t make sense to me when people don’t see that especially as there is so much literature supporting this idea. “How can you not see that having a system around the family to address their trauma, to deal with the sadness of what has happened to their family member, could be helpful to the client, who is trying to engage with rehab and relies heavily on the people around them? “It's about working within an IDT, and helping an understanding of the emotional response to the injury filter through these different layers, and then communicating that in such a way that not only makes sense to the clients and those that we're working with, but also to the solicitors who instruct us.” To deliver a multi-systemic service that serious personal injury work is effectively, Shabnam and her team of litigation-informed treating psychologists adopt a formulation approach, which they are committed to delivering differently to the vast majority of other nonspecialist psychology providers - in the client’s own environment. “I would say at least 95 per cent of independent psychologists are set up to be run from a clinic of some description, the idea being that a client would go to them,” says Shabnam.

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“But immediately, you can see that doesn't work with the serious and catastrophic injury cohorts of client that we work with – it is simply not appropriate or helpful to understand a client need outside of their complex contexts. “If you do not consider incorporating the family and professional network into the work you offer, you are not going to be able to answer the psychological questions posed to you to be able to help quality of life and the rehabilitation outcomes that need to be worked on. “Because of the way we work at PsychWorks Associates, we use the full breadth of clinical skills we were trained in from observing the care team, talking to key players in the professional network so they understand a little bit more about what's going on, communicating with the case manager regularly to help inform the coordination of the role, inter-agency working with schools and attending meetings, as required. “When seeking a treating therapist, case managers and solicitors need to look beyond the role and registration, and to look for a psychologist who has the capacity to work right in the community, where the client is. And that’s what we are committed to delivering at PsychWorks Associates.” Also working under the PsychWorks Associates umbrella are traumainformed case managers, putting trauma at the heart of its approach in a way that remains absent in large areas of case management. “When a case manager comes in at the beginning, it’s often about the physical rehabilitation” says Shabnam. “But we aren’t addressing the fact that this life-changing situation has just happened to them, and it’s going to get in the way if we don’t talk about the elephant in the room. “It’s what we informally call ‘baggage’ - and the heavier it is, the harder it becomes to engage with everyday life. And if you’re working with people who have had traumatic experiences, which is pretty much any client or family who has been affected by catastrophic injury, then that is going to weigh heavily and a lot of support is needed to offload the weight. “And rather than saying ‘I had a conversation with them about it, tick the box, let’s move on’, we need to create the foundation to allow ongoing conversations to happen around how it feels and how difficult it must be, and be able to signpost them to resources or services that are going to help. “If you do this, then the impact is often

indirectly felt. Suddenly communications are a lot easier with the client or family members for all involved, because there’s somewhere to go with all about emotion. And the way forward becomes easier to talk about and clearer for everyone involved.” Through Shabnam’s near-20 years of working in client-focused psychology work, and the expertise of the growing team, PsychWorks Associates has also begun to deliver training to other professionals working in the field. “It’s mainly for case managers and solicitors, but is also relevant to others in the IDT,” says Shabnam. “We’re looking how to get the best out of your care team, thinking about how to conceptualise the client case that you’re working on, and even how to promote self-care and avoid burnout, which is a huge issue in care.

use simply do not fit,” says Shabnam. “There are a disproportionate number of non-white and non-English clients in personal injury, particularly in the South East and London, and other bigger cities where we are beginning to work with our service, and it’s very important that any professional has an understanding of their world as that will impact on their rehabilitation. “We work in people’s private homes with their families often, which is a massive intrusion anyway, and suddenly there are rules that may or may not fit the lifestyle they would choose to have and so difficult conversations are needed. And these may or may not happen depending on how empowered clients feel. Those conversations might be about how they want people to respect a dress code in their home, understanding different food habits, how religious practices happen, without facing judgement and without being ignored. This is the backdrop many minorities have experience of, making these moments potentially feel like ‘micro-traumas’. “With the longitudinal context of trauma, pretty much anyone you speak who is non-white will talk about racial trauma in some way - we need to acknowledge and understand how this can be triggered in our communications and practices in the name of rehabilitation.” Its commitment to sustainability is another issue which runs deep, and in which PsychWorks Associates are keen to lead the way. Gabriel, who has worked extensively in sustainability, says: “This fits with us personally, as directors, and with me from my career background. But also, it fits with the general agenda of social responsibility that companies increasingly now have, and we certainly have as a business. Over the next year, we want to introduce a way of reducing formal plan to reduce our impact on the environment in a way that's going to be sustainable within itself, and be appealing to clients looking for conscious responsibility throughout our operation. Psychworks Associates is embodying in its business focus the positive change it wants to see in the world of personal injury rehabilitation. However, its referrers and clients know it best as simply a reliable service offering high quality and cost-effective case management and treating psychology support.

We a r e a l l a b o u t focusing on the trauma, for both the client and t h e i r f a m i l y, a n d h o w that then looks to the professional network supporting them “We need to be doing everything we possibly can to look at how we can get the very best for the client and what is probably going to work or not at the case may be, while also thinking about the professional need in the medicolegal context.” And while helping to transform traditional practice through the focus on trauma, PsychWorks Associates is also leading the way in helping to shape the future of the industry with its deep-rooted commitment to diversity and sustainability. The clinical teams collectively speak over 15 languages, and the service is proud of its ethnic representation to support their clients, a significant proportion of whom are from diverse ethnic background. “Case management and psychology are clearly white English, female-dominated professions, and the concepts we are taught in mental health alone are very Euro-centric - and we therefore need to acknowledge that someone of colour may experience things very differently to someone who is white English and sometimes the models we

www.psychworks.org.uk 07942 691070

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How positive behaviour support can deliver life-changing outcomes Mark Henry, head of behavioural support and mental health at Exemplar Health Care, discusses how bespoke interventions can enable people who display behaviours of concern to thrive, and shares the stories of three service users who have been supported by its specialist team to achieve this

Where people have complex health conditions, this can result in behaviours which can make safely caring for them a challenge. While many people who display behaviours of concern are able to live in ‘mainstream’ residential homes or supported living, others thrive in care homes that specialise in care for people with these complex behaviours. Behaviours of concern can have a range of causes, often involving damage to the brain or a mental health condition. People can experience such behaviours due to: • dementia • a brain injury, such as from trauma, or medical insult to the brain such as a tumour, haemorrhage or infection • a disability the person was born with, or genetic conditions • stroke. At Exemplar Health Care, the people we support usually display behaviours which have made it difficult for them to interact with others safely or effectively, such as physical or verbal aggression or offensive language. Many of them have been deemed to have behaviours that are considered ‘too complex’ for mainstream nursing and care services.

Our community-based homes and OneCare services provide person-centred care and rehabilitation that focuses on maximising independence, building everyday living skills and empowering people to live their best lives. Through our specialist care, many people are able to find new coping strategies and learn skills to manage their feelings. Our approach to behaviour support focuses on how we can prevent the need for restrictive practices and reduce the frequency and intensity of behaviours of concern, so that people can live a fulfilling life and integrate with society without their behaviour restricting what they can do. Our trained teams work with individuals to understand the reasons for their behaviour, to learn the skills to manage their own behaviour, to identify, remove and reduce any trigger factors and implement strategies to reduce the frequency, duration and impact of incidents of behaviours of concern. We look at psychological methods of distraction and diversion before other methods are considered. Our care homes have high staffing levels which enable us to work at people’s own pace and build trust. Our homes also have in-house

Activities and Life Skills Teams that support people to take part in everyday activities that are meaningful to them, which helps to reduce feelings of frustration for people who display behaviours of concern. All of our care and nursing colleagues complete our Exemplar Positive Behaviour Support (EPBS) training which has been certificated by the British Institute for Learning Disabilities Association of Certified Trainers (Bild ACT). This confirms that the learning meets the Restraint Reduction Network (RRN) Training Standards 2019. The certificated EPBS training includes up to five days of learning – two of which cover PBS theory, psychological support, self-protection skills and break away techniques, and up to three days of level two training which covers restrictive practices. The training provides colleagues with the skills and knowledge to protect people’s fundamental human rights and promote person-centred, best interest and therapeutic approaches to supporting people when they’re distressed. We also have a central team of Mental Health and Behaviour Support Specialists who support our colleagues and service users who display behaviours of concern, including crisis or rapid intervention when a person’s behaviour is escalating. The team is made up of Behaviour Support Specialists who take the time to observe the individual, understand the reasons for their behaviour and suggest strategies to reduce distress or discomfort which might be causing the behaviour. Through dedicated, bespoke support, our team - working closely with our service users - are able to deliver outcomes that truly change lives.

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Meet Wayne, resident at Dearnevale care home in Grimethorpe

Wayne lives with central pontine myelinolysis (CPM), a neurological condition that happens in the pons area of the brain. When he moved to Dearnevale in 2016, he was told he only had 12 weeks to live. When Wayne first moved to Dearnevale, his behaviours of concern were due in large part to the frustration of his situation and very short life expectancy. Our high staffing levels have enabled Wayne to progress at his own pace and build trust with the Care Team, developing strategies to recognise when he’s experiencing anxiety, and to manage these symptoms before they escalate. Over the past few years, the number and duration of incidents of behaviours of concern have reduced dramatically.

Rebuilding mobility When Wayne first moved to Dearnevale, he was at high risk of falls and received one-to-one support to mobilise safely. Regular sessions with the in-house Physiotherapy Team have supported Wayne to stand and improve spasticity in his hands and arms. He’s now able to make small movements independently, such as turning in bed and lifting his legs when getting dressed.

Meet John, resident at Dearnevale care home in Grimethorpe

In 2018, John experienced a thin acute subdural hematoma and contusion following a fall. This led to an acquired brain injury, dysphasia, poor short-term memory, epilepsy, poor vision and Bell’s palsy. Before John experienced his injury, he owned a building business and worked seven days a week - his only rest time was Sunday afternoon when he went to the local working men’s club for a rest and a pint. John’s spare time was spent with his young daughter or playing football. He coached the local pub football team. The team at Dearnevale has helped John to develop strategies to recognise when he’s experiencing periods of agitation that could escalate to behaviours of concern. He can now vocalise when he is feeling this way, and recognises when he is about to experience seizure activity. Our high staffing levels enable John to progress at his own pace and build trust with the Care Team. During his time at Dearnevale, the number and duration of incidents of behaviours of concern have reduced dramatically.

Rebuilding mobility When John first moved to Dearnevale, he was at high risk of falls and received one-to-one support to allow him to mobilise safely.

Improving nutrition Wayne has received input from Dieticians to support him to eat orally again. He’s had his PEG feeding tube removed and is able to eat and drink thickened fluids orally. Wayne only uses his PEG for top ups. Wayne has also been supported by Speech and Language Therapists to enable his speech again, which has supported his independence and reduced feelings of frustration.

Getting a passion for life back Wayne prefers spending time on his own, which staff respect. He enjoys supporting Liverpool FC and watching other sports such as snooker and tennis. He occasionally joins in group activities – especially when karaoke is on! Wayne enjoys a good relationship with family, and now sees them more than he ever did. He has a wicked sense of humour and wants to write a joke book to send to all Exemplar Health Care homes and spread some laughter.

Over the past few years, John has enjoyed sessions with the in-house Physiotherapy Team to build his body strength and range of movement. Now, he enjoys walking in the local community with colleagues and goes to football training and plays on a local team. He’s just started jogging with a coach to build his fitness. Being active and staying fit has improved John’s wellbeing and reduced feelings of agitation.

Developing life skills John enjoys regular sessions with the inhouse Life Skills Team at Dearnevale, and has developed his hand and eye co-ordination and enjoys completing the Rubix cube. He asks staff to mix the cube for him and has successfully completed the puzzle 423 times! John has also developed his level of concentration and has begun playing the keyboard, as he did before his injury. He’s completing self-taught lessons that he accesses online, with the aim of performing at the Christmas talent show. With the support of the team, John has begun preparing his own meals in the therapy kitchen. He loves helping out in any way he can, and volunteers to clean the therapy kitchen and hoover the training every Monday.

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Meet Karen, resident at Tyne Grange care home in Newcastle upon Tyne Karen had a spinal cord injury eight years ago which resulted in quadriplegia. She also has a personality disorder and displays behaviours of concern. Karen moved to Tyne Grange in 2020. She has complex needs in terms of her physical condition, and displays behaviours of concern with regular selfharm and emotional dysregulation. Karen has had many previous placements that have broken down, mainly due to the complex behaviours of concern that she displays. With 1:1 support from our Care Team, and input from the Therapy Team at Tyne Grange, Karen now enjoys a good quality of life.

Physiotherapy Karen has a session with the home’s in-house Physiotherapist twice per week. These sessions have improved her upper body and hand dexterity, strength and range of movement in her legs and her transfer and mobility practice. Karen’s movement has improved significantly and she has progressed from requiring a full hoist to using a stand aid to being able to walk using a walking frame. She's achieved 54 metres of independent walking with a walking frame. We’ve set a goal for her to be able to walk across the Millennium Bridge from Newcastle to Gateshead independently.

Occupational therapy Karen works on preparing food and baking, increasing independence with personal care,

accessing the community, building self-esteem and managing her emotions through sensory/ self-soothing work. Karen really enjoys her time spent accessing the community. Her goal is to find a local class to start a new hobby and meet other people.

Behavioural support Our high staffing levels have enabled Karen to progress at her own pace and build trust with the Care Team. This has reduced the number of instances of behaviours of concern. Her selfharming behaviours have dramatically decreased. Karen’s built a great rapport with the staff at Tyne Grange who have got to know her well and have learned how to manage her emotional needs. Karen has also explored a variety of activities and interests. She loves doing arts and crafts, going shopping, making friends and is the home’s Service User Ambassador.

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Wiltshire Farm Foods and The BDA Collaborate On ‘Ready, Steady, Blend’ Challenge to Raise Awareness of MDT Approach For those living with swallowing difficulties, there are several considerations and challenges that can arise when cooking nutritious meals to the correct texture. To demonstrate these, Wiltshire Farm Foods and the British Dietetic Association (BDA) have combined forces to produce a video that launched during Dietitians Week. The aim of the video is to raise awareness of the practical implications of dysphagia, and to ensure that healthcare professionals (HCPs) – particularly Speech and Language Therapists (SLTs) and Dietitians – have takeaways they can then put into practice. Since the adoption of the IDDSI (International Dysphagia Diet Standardisation Initiative) framework by the BDA and RCSLT in 2019, there has been significant focus put on helping HCPs understand descriptors and how each texture can be achieved in a health or care setting. However, there has been less emphasis placed on supporting those with swallowing difficulties

at home. The BDA and Wiltshire Farm Foods together recognised there was an opportunity to further explore this topic, with this ‘Ready, Steady, Blend’ exercise resulting from the collaboration. The ready meal provider challenged SLT Lindsey Collins and Dietitians Laura Clarke and Alison Smith to create a Level 4 puréed meal from a Wiltshire Farm Foods Roast Beef Dinner. During the ‘Ready, Steady, Blend’ practical session, the HCPs were given blenders, thickeners and various cooking utensils to ensure the meal was the correct consistency to meet IDDSI Level 4 guidance. The IDDSI framework provides a common terminology to describe the characteristics and consistencies of various texturemodified foods and drinks. Specialist meal providers, such as Wiltshire Farm Foods, have expertise in supplying meals developed in alignment with IDDSI guidance; these

are always designed with dietetic input, to ensure the needs of more nutritionally vulnerable service users are met. Clinical Specialist SLT, Dr Lindsey Collins, was invited to discuss the diagnostic phase of dysphagia, also stressing the importance of collaboration between HCPs in the video: “It’s about recognising what we know and what we don’t know. SLTs have our specialist knowledge, as do Dietitians. It’s really important to not assume that the other already knows something. We’re not the final say on our service user’s eating and drinking needs, and it’s about working together as a MDT. Discussion and ultimately, collaboration, is key.” Resulting discussion amongst the HCPs demonstrated the learnings taken from the challenge and, moving forward, how consultations with those with dysphagia could be improved to achieve more open dialogue, safer outcomes, and better access to a wider range of appetising and nutritious meals. The video launched during Dietitians Week (20th – 24th June) and is available to view on the BDA’s website. In the spirit of collaboration, Wiltshire Farm Foods is also encouraging HCPs to attempt their own ‘Ready, Steady, Blend’ challenge at home and share the images across their social channels. To watch the video, visit: specialistnutrition.com/blog.

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Putting HR on the care agenda

Often regarded as something only needed when things go wrong, if introduced at the right time, proper HR and employment procedures can be of huge benefit to case managers and families caring for a loved one. NR Times speaks to Cecily Lalloo, managing director of Embrace HR, to learn about the positive difference specialist HR advice can make. In making care provision for people living at home with complex injuries, many different parties can be involved - carers, case managers, therapists, family members, medical teams, solicitors. But where does HR come in to the equation? Not often considered alongside the therapy and rehabilitation needed to rebuild someone’s life,

in its own way, HR can actually be fundamental to this being delivered, because where people are paid to do a job, employment obligations must be met. Through the careful and sensitive handling of defining practices and setting boundaries for those working in a family’s home, the involvement of specialist HR can enable a smooth and professional working relationship between the family and those tasked with delivering care - and often helps to actively avoid the issues which cause litigation to hit problems.

“Managing employees is quite different in a home environment because it’s much easier to cross the boundaries. It’s more relaxed, you will get to know the family and client well, which can then make it difficult for the family to talk to someone they know well and address any issues, or start to take action to address issues,” says Cecily Lalloo, founder and managing director of complex care specialist advisor Embrace HR Limited. “The case manager often relies on the staff or family to bring any issues to their attention, as they may not have day-to-day contact with the care package, and they may only find out about things upsetting the family or the carers at a later stage. But really, we should be considering much earlier how HR can help before matters become more difficult to manage. “You're working with families who may never have thought that they would need to have

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people employed and working in their homes, it's been thrust upon them by circumstances. And it’s also not your normal, hierarchical organisation, you don't have a CEO, or managing director, or line managers running things - it’s very different, but it is still an organisation in its own right. “Usually it is for the case manager to act as a line manager, or the family member may take on that role or the role of team leader. “But in some scenarios, it can get to the point where those involved are tearing their hair out, and the solution will lead to settlement agreements when that could perhaps have been avoided if we’d have addressed the issues earlier. We could have helped to sort things out differently. “For families, and for case managers, it is about managing people, and this starts with understanding an employer’s obligations, which includes having the paperwork in place to be able to do that, so everyone knows expectations. That can be so very important in the whole people process being a success.” Embrace HR, founded in 2009, has a long and esteemed track record in working with growing numbers of independent case managers, Court of Protection deputies and solicitors in supporting their clients with understanding and making provision for the unique employment relationship built with families. The company’s work in supporting HR and employment procedures in home-based care sees Embrace HR consultants - all Chartered Members of the CIPD - adding an additional level of protection and support for families, with Cecily having written a book on the subject, entitled Employing Care Staff in Your Home. “We follow thorough HR processes, and we realise these can take time, but if you don’t follow this, you put yourself at risk. We advise our clients of risks and will assist them with the best employment outcomes,” says Cecily, who has over 25 years’ experience of advising and supporting SMEs. “It’s important to establish who is the employer in these situations. Very often, people working in private homes don’t realise that it may not be the family member with whom they have most contact, nor the case manager. “In these situations, you’re dealing with somebody’s private home, with access to all of their personal belongings, you’re hearing confidential personal information that cannot go outside of those walls. You need to give the family the assurance around their privacy. “Often, families have been through so much

There's always a solution, but it's how far down the line you look for that solution. Ideally, HR should be considered from the outset trauma already. We have quite a few young clients and their parents have been through so much, they might struggle with having people in their home 24/7 caring for their offspring. So we can help to put some boundaries and arrangements in place by working with case managers, the families themselves and the support staff.” Ensuring the employment rights of care workers themselves are addressed is also paramount, says Cecily, and is another area of specialism for the business. “There are the issues of managing people so they have rest breaks they need, they might be holding down two or more jobs, so are they getting the holiday they should? Are they working more than they should? It is important that contracts are in place to cover this and families and staff are aware of breaks. It is not straightforward when staff work on their own and they cannot leave the client alone,” she says. “Staff are working variable hours so they’re being paid at variable rates, and there are also different status of employment. You have directly employed staff, and then there are workers who work on an ‘as and needs’ basis (often called ‘bank’ workers) and there are the self-employed. Over time it is possible that workers may gain employed status, by the nature of how they are working. “These are all things that need to be considered and managed, for the benefit of the employer, the case manager, the family, and the staff themselves.” And as well as HR and employment provision for home-based care, Embrace HR supports their clients with recruitment, helping them to add specialist resource to their teams during a particularly difficult time in recruitment for the care sector. Embrace HR also assists deputies and case management companies with other HR processes, such as hearing an appeal

or grievance, or helping with disciplinary procedures. “We work with many independent case managers who don't need a dedicated HR service but require HR support to cover a range of tasks for them. Deputies refer us to a number of clients on the strength of the work we do, sometimes these clients don’t have a case manager,” says Cecily. “Recruitment is a challenge across the board in care, but I think with families, it can be particularly challenging because there needs to be that rapport with the client, the case manager, and other colleagues and there needs to be a degree of flexibility. “With a client who is a child, for example, they may need care before school, after school, and during school holidays, as well as night shifts but it’s not always easy to employ people who can accommodate shifts like this. Hence we rely on teams that are flexible so that when anyone is away, they are able to cover. “We find that in recruitment for particular roles like this, talking directly to the family involved is important, because we find out a lot of information that is sometimes missed. This can help us to understand the type of person the family are seeking, and makes the recruitment process a success. “Sometimes the case managers or family will do the search and selection themselves, and we will support them by confirming or arranging face-to-face interviews, keeping in touch with the candidates, and when an offer is made, carry out the onboarding and other paperwork. While HR and employment advice is often only sought when things go wrong, Cecily is committed to promoting the message that HR support should be considered at an early stage, to put preventative measures in place. “There's always a solution, but it's how far down the line you look for that solution,” she says. “Ideally, this should be considered from the outset, whether it is about employing people in a home or recruiting someone to your team and you’re putting contracts and job descriptions in place. HR is sometimes seen as a hassle and that it is not needed. “It does not need to be a hassle,” says Cecily. “Once it’s understood what the obligations are and why they’re so important and how HR can help to save time, money and stress, we can start putting things in place. “If we can embrace HR at the right time, we can save many potential problems further down the line.”

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The Mental Capacity Act Back to Basics What is the Mental Capacity Act 2005 (MCA)? The MCA was enacted to protect those people who lack capacity to make decisions for themselves and it provides the legal framework for acting and making decisions on their behalf. The MCA is designed to empower people to make decisions for themselves where possible, and protects people who lack capacity by placing individuals at the centre of the decisionmaking process. The MCA introduced the Court of Protection, a court with the authority to make decisions on behalf of someone who lacks capacity. These decisions can include placing restrictions on a person’s liberty, granting a power of attorney or appointing a deputy to manage the person’s affairs. Who does the MCA apply to? The MCA applies to everyone involved in the treatment or care of people aged over 16 in England and Wales, including social workers, therapists and doctors. These professions are under a duty to know how to apply the MCA in their role.

Empowering people to make decisions for themselves, and protecting them when they cannot, is a key feature of the Mental Capacity Act 2005. Paul Kelly, associate solicitor at Slater and Gordon, discusses the legislation and answers some of the key questions around its powers and impact 76

What are the key principles of the MCA? The MCA contains 5 key principles: 1 . A person must be assumed to have capacity unless it is established otherwise. 2 . A person must not be treated as unable to make a decision unless all practicable steps to help them to do so have been taken. 3 . A person is not to be treated as unable to make a decision just because a decision is unwise. 4 . A decision made in accordance with the MCA must be in the person’s best interests. 5 . Before a decision is made, it must be considered if the decision can be made in a way which is least restrictive of the person’s rights. How do you know if a person lacks capacity? The MCA confirms in legislation that anyone aged 16 or over should be presumed to have capacity unless it is shown otherwise.

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A person may lack capacity due to number of reasons including a brain injury, mental health problem, dementia, a learning disability or substance misuse. A person may also only lack capacity at certain times or in respect of certain decisions. Under the MCA you need to satisfy both stages of the two-stage functional test to establish a lack of capacity: Stage 1) A person lacks capacity if at the material time they are unable to make a decision for themselves because of a disturbance or impairment of the mind or brain. The disturbance can be permanent or temporary; and Stage 2) A person is unable to make a decision for themselves if they are unable to: A) Understand the information relevant to the decision; B) Retain that information; C) Use or weigh up that information in the process of making the decision; or D) Communicate his decision. The assessment must be made on the balance of probabilities, i.e. is it more likely than not that the person lacks capacity? This should be recorded when making your determination. Where it is decided that someone lacks capacity to make a decision, how do you make a best interest decision? In accordance with the five principles, where a person lacks capacity, any decision made needs to be in their best interests. Best interest decisions will be different in every case, as what is in one person’s best interests may not be in another’s. The MCA states that when making a determination on best interests it should not merely be on the basis of a person’s age, appearance or a condition/behaviour of theirs. The MCA says that you should encourage the person to take part in the decision, get their views and identify the relevant circumstances. You should also assess whether the person may regain capacity and if the decision could be postponed until such time. In making a decision it is important to consult those involved with the person such as family members, carers and clinicians. The MCA excludes certain decisions from being made as they are too personal or governed by other legislation such as, consenting to marriage or divorce, voting, having sexual relations or consenting to a child being placed for adoption.

What is the Court of Protection? The MCA created a new superior court to be known as the Court of Protection (“COP”). The COP oversees the implementation of the MCA and the court’s authority covers a person’s welfare decisions as well as matters in relation to their property and affairs. These decisions can cover everything from if a person should buy a property, to whether a person should have their medical treatment withdrawn and everything in between. The court has the power to make a declaration that someone lacks capacity and has the power to appoint deputies (see below). The court is generally split into two branches: Welfare; and Property and Affairs. In respect of welfare, the court has the power to decide where a person is to live, who they have contact with (or not) and they can grant or refuse consent to the carrying out of health care treatment. The property and affairs branch has the power to control and manage a person’s property including the sale, or gift of their property. They have the power to acquire property in a person’s name, carry out a trade or business, discharge debts and they can execute a will on a person’s behalf where they lack testamentary capacity. The COP will also make decisions on any disputes between parties over what is in a person’s best interests. Cases are often brought before the court by family members and professionals alike.

The deputy will be given certain delegated authorities from the court to make decisions for the person. Such authorities may allow the deputy to take possession and control of the person’s finances and property, authority to purchase property or invest their funds, as well as authority to make gifts. When a deputy is appointed, they stand in the shoes of the person who lacks capacity and have authority (subject to the court order) to progress matters on their behalf. Like LPA’s, deputyship orders can be in respect of welfare or property and affairs.

Can a person appoint someone to make decisions on their behalf? The MCA introduced a new form of Power of Attorney known as a Lasting Power of Attorney (“LPA”). An LPA allows another person or group of people to make decisions on a person’s behalf. The person granting the LPA must have capacity to do so. An LPA must be registered, and the attorneys must make sure that the MCA’s statutory principles are followed. LPAs can be for welfare or property and affairs although you are required to apply for both individually.

How does an individual have their voice heard in proceedings? The MCA introduced Independent Mental Capacity Advocates or “IMCA’s” as a statutory safeguard where a person lacks capacity to make some important decisions. IMCA’s can be appointed where the person concerned does not have family or friends to represent them.

If an LPA is not suitable is there another option? Where a person lacks capacity to make an LPA, the Court of Protection can appoint a deputy. The deputy can be an individual or two or more people. If a person’s estate is particularly large, the court can appoint a professional deputy.

How does the MCA apply to someone who is deprived of their liberty? The Deprivation of Liberty Safeguards (DoLs) are an amendment to the MCA. DoLs make sure that people who do not have the capacity to consent to their care arrangements are protected if the arrangements deprive them of their liberty. Where a person is being deprived of their liberty this is required to be authorised. If the person lives in a care home or hospital the local authority can authorise the deprivation of liberty, this is known as a “standard authorisation”. In other circumstances the Court of Protection need to authorise the DoL. You also need to apply to the COP if you want to challenge an authorisation where it may be that it was not authorised properly, is not in the person’s best interests or if they have capacity to decide themselves on their treatment or placement.

What are the consequences of mistreating someone who lacks capacity? The MCA made it a criminal offence to ill-treat or wilfully neglect a person who lacks capacity, which is punishable by a prison sentence of 5 years, a fine or both. Where can I read more? The MCA Code of Practice should be read in conjunction with the MCA as it provides guidance to those working with people who lack capacity and it explains how the MCA is applied on a dayto-day basis.

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Recruiting and developing a sector-leading team

Recently, the question most people have asked me when attending a stand at the numerous conferences we’ve been present at, is “How are you finding recruitment?” It certainly isn’t just us being asked, you can see these conversations all around the room. The media ‘care staffing crises headlines loom heavy, and even if you don’t actively seek the information, it’s there. Even on social media jobs boards, candidates post “Looking for any job, but NO CARE WORK” - that’s not a typo, they really are shouting!

BIS Services do not provide any personal care, we focus on the retraining of functional skills from a cognitive rehabilitation perspective. Like many others, we are having to heavily change the perception of the type of work we do, to prospective employees. We could, as many of us have already discussed in workshops, seminars and conferences, argue the many reasons for shortages, but my perception is that it’s not just about money. If only it was that simple. Looking at our current and previous BIS employees, the need for individuals to be regarded and respected is key, quite rightly. This notion that those in ‘care’ work are beneath the professionals is a bigger issue. Even a slight title change makes a big difference; we moved away from support worker to rehabilitation assistant many years ago. At the time, therapists would still refer to them as support workers, but I’m pleased to see many similar employers in our field moving to such titles. There is nothing minor about the work of a support worker, far from it. But for those coming into the field, there appears to be an issue with how they are perceived, especially if they are coming from a graduate platform. Make of that what you will. The vast majority of our previous employees have moved into clinical training or AP roles and will form generations of psychologists. We need to ensure from the get go that they understand the work that happens at the root of community rehabilitation. BIS have employed hundreds of graduates in our 15 years, and we continue to ensure that the standards remain high, both of service delivery and what we provide to our employees. One only has to look at the huge array of exhibitors at conferences, the daily emails offering innovative workshops and trainings, to see the exciting opportunities available in neuro-rehabilitation. This is what we must promote, and much earlier. Many graduates will come to us seeking experience in neuro, but leave with experience in a variety of allied professions, sometimes moving away from psychology into a related field such as speech and language therapy or occupational therapy. At times, others realise the field isn’t for them at all. BIS still has a long standing employee who works part time, having come to us as a psychology graduate and then retrained as a solicitor!

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Other pathways have included mental health counselling, IAPT training, child psychology, insurance claims case managers, holistic masseurs and hypnotherapists. That is what we want to encourage, a sense that the ‘classic’ pathway is not the only one. We have extensive opportunities in house as well, and such as Eky Popat’s transition from rehab assistant to operations director. Having worked in the field for almost 20 years, it is a delight now to sit around MDT table that includes a specialist neuro nutritionist, an integrated 3D massage therapist, a scar tissue release specialist, a vestibular physiotherapist, a speech and language therapist, music therapist, an OT case manager, neuropsychologist, neuropsychiatrist, neuro personal trainer, a psychotherapist, and not forgetting our important support staff. I struggle to think of a field with such diversity. I find it so exciting that there are now so many more opportunities in the field of neuro-rehabilitation, I have not even touched on the spinal injury or more physical side, of which the professionals list is aplenty. The training opportunities are also important for those looking to enter into the field. So far this year, we have delivered training on cultural competency, specialist safeguarding, fatigue management, insight and awareness, challenging behaviours and this week we began our specialist psychologist-led Compassion Focused Therapy (CFT) training, with a heavy emphasis on our staff wellbeing. This complements all the other specialist training in cognitive rehabilitation and brain injury we consistently deliver, and is housed in our extensive training library.

Not only does this inform the current work and service, but further adds to the expertise of those who will eventually go on to further careers. This is extremely important to me and BIS values hold firm on the support we provide to our important rehabilitation assistants both when they work here, and for their later endeavours. Being part of the future of neuro-rehabilitation services in this regard is something very close to my heart. I enjoy nothing more than seeing a previous employee who came to us straight from university take up clinical post somewhere else in the country eight years later, or seeing a previous RA set up their own business in specialist brain injury holistic therapies with huge success. This brings exceptional pride. Those entering the field need to feel pride in what they do, and what their skills can bring to those they support, and the fresh eyes they bring to an established therapy team. That is what matters; a sense of worth, pride, and that they have an important role to play in changing someone’s life. We must all ensure they feel this from the moment they learn about neuro-rehabilitation and the opportunities available to them. Later this year, the BIS Training Academy launches, for those without graduate status or previous brain injury knowledge. There are many prospective employees out there with exceptional experience and transferable skills, that we want to invite them to join the future of neuro-rehabilitation. We will be working with NR Times on this exciting project, so watch this space.

Eky Popat, operations director at BIS Services, began her career with the business 11 years ago as a cognitive rehab assistant. Here, she shares how continues to progress with BIS and how she is supporting others to do so too.

our skills are, but you should never under-estimate your knowledge or how important what you have learnt can be applied in different specialisms,” she says. Having joined BIS and working in cognitive rehabilitation, an area Eky quickly realised she loved, she came under the mentorship of Natalie, a nationally-renowned specialist in the field. “I took on a case load of client work and saw how versatile my skills actually were. I was using all of my skills but was still learning, I loved how every day I was challenged,” says Eky. “Natalie supported me through my professional development at every stage, but probably equally important was the encouragement I had and that bit of reassurance when I needed it. You do question yourself sometimes, especially when you’re young and just starting out, but BIS is great at providing mentorship and opportunities to expand on one's own skills. “This is a hugely responsible job, you’re going into people’s homes as a lone worker and providing them with a quality of life and supporting them with their goals, so it’s great to know you’re doing a good job and are being equipped with the skills to do it to the best of your ability.” As well as progressing through the ranks, Eky has also completed her Certified Brain Injury Specialist Training, and is now undertaken further training to fulfil the registered manager role at BIS. She has recently completed her Level 5 diploma in leadership and management in health and social care. “I continue to have my own case load too, and still see clients I’ve had since I started here. It’s important for the team to see that the directors are going out and doing it themselves too, we’re not just asking that of other people,” says Eky. “And because we still have caseloads, we fully value the need for reflective practice, ongoing training and professional development, to ensure we can learn from every opportunity, and we are up to date with changes and then implementing them to provide the very best service we can. “At BIS, we absolutely believe in ongoing opportunities and support all our team in this way, from their earliest days with us.”

As one of the first full-time employees at BIS in 2011, Eky Popat has progressed through the ranks to become a director, supported by ongoing opportunities to develop her skills and support her progression. Having joined as a cognitive rehab assistant, Eky then became a senior assistant, moved into managing other people as a team leader, and now helps to oversee the running of the business as operations director. She is also set to become BIS’s Registered Manager. With professional development continuing throughout her 11 years with the company, Eky has also joined director Natalie Mackenzie in becoming one of only a handful of Certified Brain Injury Specialists in the UK. Now, one of her roles with BIS is to support the training and supervision of new people joining the company - an area Eky, based on her own experience, is hugely passionate about. “Progression comes through continued professional development, and that is something that BIS is always updating and giving opportunities in. It applies equally to those people who are new, and those of us who have been here for years,” she says. “I strongly believe that a competent manager equals a competent workforce, and this is reflected in the high-quality service that we provide - we are all constantly improving and growing in our knowledge of legislation and regulations. “I have had opportunities throughout my time at BIS and have progressed as a result, and that is what we are supporting others to achieve.” Eky joined BIS having graduated with a degree in psychology and MSc in applied child psychology, but then realised this was not the route she wanted her career to go down. “As a graduate, we underestimate the number of opportunities within the field of neuro-rehabilitation and do not appreciate how transferable

INTERVIEW

Here, he speaks to NR Times about why h e’s p r o u d t o b e o u t s p o ke n a n d h ow his specialist neuro c a r e c o m p a n y PJ Care is leading sector-wide change

Speaking up for care Neil Russell has gained a reputation for his passionate defence of the care sector and his efforts to secure greater recognition of the vital role the staff working within it play in healthcare. 80

For many years, the crisis around care and its reputation has been increasing, amplified significantly by the COVID-19 pandemic and the perceived lack of recognition for the role frontline care workers played during some of the most challenging conditions most had ever encountered. Regarded by many as being an underpaid and under-valued profession, the estimated shortfall of 80,000 care workers is putting the sector under immense pressure to continue to deliver the often life-changing specialist care so many people depend on. This is not lost on Neil Russell, chairman of PJ Care, who has become a vocal and outspoken critic of the challenges facing social care, a champion of the need for greater recognition, and is helping to pave the way for change through his own business. With continued investment in the development of the PJ Care frontline team, who are paid the real living wage, Neil is targeting an hourly rate of £15 per hour within the next four years for his staff, in recognition of the huge role they play in healthcare. The business - set to significantly expand one of its three care centres in the near future - is also addressing the recruitment crisis through its apprenticeship programme, with PJ Care now having one of the biggest percentages of apprentices among its staff in the sector, and carers now beginning to qualify as nurses as a result of their in-house training. PJ Care, which has 183 beds across two purpose-built centres in Milton Keynes and one in Peterborough, is also helping to address the future of care and the valuable role of technology within that by embarking on a pioneering research study with the University of Leicester.

INTERVIEW

Neil - who proudly confesses to having done every job within PJ Care, from maintenance man to carer - acknowledges that his changemaking approach isn’t welcomed by everyone, but in a sector where action is urgently needed, he is determined to make that happen. “Yes, I'm opinionated. But it can actually be really useful because then it raises the profile of the social care sector,” he tells NR Times. “It’s like Steven Bartlett from Dragon's Den once said on his podcast - if you walk into a bar and there's somebody dancing on the table, 50 per cent of the people in there are going to hate that guy, but 50 per cent of the room like it. If you want to make a difference, you've got to be the guy dancing on the table, because eventually other people are going to get up and dance with you. “And that's what we were doing, to a degree, we are dancing on the tables, making a spectacle of ourselves. A lot of people don't like it. But a lot of others do.” And for those who do, Neil is a breath of fresh air, a champion of change who frequently challenges the issues so many do not. In characteristic style, Neil is matter-of-fact about why social care deserves more appreciation. “There are 200,000 nursing care beds in the adult social care sector, but only 100,000 NHS hospital beds in England. So we were clearly doing something useful to the NHS by keeping those 200,000 people out of those 100,000 hospital beds,” he says. “We’re cheaper than a hospital bed, and when it comes to the long-term care we provide, we're better at it. “But because we’re in the main privately owned, there’s an awful lot of people think that's a bad thing. We make a profit - but we have to make a profit because we're privately owned. It's actually a legal requirement. If I operated at a loss, I’d end up going to jail. “Some people still see us as kind of bad guys because that profit word is involved. It’s a challenge to try to overcome that. “But because I have done every role at some point, I’ve done personal care and managed challenging behaviours, I’ve mopped the floors and cleaned the toilets, I know the work our team do - and that’s why I’ll always stand up for them. “It’s these guys who are on the frontline, the carers, the nurses, the housekeepers, the chefs. I'm sat at home now staring out over rolling

fields out of my window, and it’s not right for me to take the plaudits. I'm not the one who's actually doing the work. But I can help to make a difference.” While Neil regularly speaks out on issues affecting the sector - as well as his many and regular media appearances, he was quoted in the House of Lords over his opposition to mandatory vaccinations for care staff - he is also keen to lead the way with PJ Care. Founded in 2000 by his mother, Jan Flawn awarded a CBE for her nationally-significant work during a long career in healthcare - and opening its first neurological care home the following year, the company has become renowned for its high standards, both for clients and near-600 staff. Named as a Sunday Times Best 100 Employer with a Platinum Investors in People Award, PJ Care also delivers strong outcomes for people with neurological injuries and progressive conditions, often after failed placements elsewhere. The quality being delivered - planned intricately by Jan ahead of the opening of Bluebirds in 2001, and replicated in the subsequent openings of its Mallard and Eagle Wood care centres - is all-important to the business. “The Bluebird and Mallard are both recordbreaking vehicles, and we chose those names to reflect that we’re pushing the boundaries of excellence,” says Neil, who was working as a Foreign Office press officer in Poland when PJ Care was established, and relocated back to the UK to join his mother in the business. “We have some fantastic success stories, there have been so many over the years. There was

one gentleman with frontotemporal dementia who hadn’t spoken for two years. He was a former nurse and within six months of being with us, he was doing the drugs rounds with our nurse and telling her what she should be doing. “There was another guy who came to us for six weeks of palliative care - he had 18 months because he was in the right place. “In an environment where people feel safe, they can achieve so much. That’s what we want to give them. Watching people walk out of the front door, after you’ve supported them to do that, is what it’s all about. “And for our staff, it’s things like paying the real living wage instead of minimum wage, and we're working to push that up as high as possible. “We're aiming over the next three or four years to hit £15 an hour as the starting rate. We have a lot of work to do in order to do that, so we'll be able to afford to pay for it, but the advantage we have is that no one else owns our business. It's all family owned. “That’s a big part in us being able to take the stance we do, to speak out like we do. “We’ve got 100 per cent occupancy. We're not tied in to local authority rates or CCG rates, every resident has got a separately negotiated contract. We haven't got external investors who want their 10 per cent return before anything else is even considered. “So we're in a very fortunate position - but it’s our choices over the years that have put us in this position.” The ongoing development of staff is something Neil is keen to focus on, to continue to grow PJ Care’s offering while also helping to address the wider recruitment crisis in the sector.

INTERVIEW

I have done every role at some point, I’ve done personal care and managed challenging behaviours, I’ve mopped the floors and cleaned the toilets, I know the work our team do - and that’s why I’ll always stand up for them. “We figured if we can get the skill levels up, so we're building that up over time, we will improve the retention,” says Neil. “We've got a huge training budget and our own in-house training team. We've got one of the country's highest percentages of apprenticeships running, and carers who have been on our programme are now starting to qualify as nurses. There has been a shortage of nurses for years, so we decided to breed our own. “But this is a difficult sector to work in. We're getting a lot of people new to the industry, they come to us from retail or hospitality, and then they realise they don't like it. But they don't know that until they've done it. “So you’re left to deal with that churn in the first few months as people come in and leave, but you have to give them a chance - some of our best carers never worked in care before they came to us.” Through Neil’s own background in working in all aspects of the care operation, not only does that give him a greater appreciation of the efforts of frontline staff, but also enables him to build the quality at PJ Care further. Two of Neil’s fellow directors have also worked in frontline care, and Jan - now a non-executive director - began her career in nursing. “When I first came to join PJ Care, I had never worked in care, but my mum said not to worry because I’d only be working in the back office,” recalls Neil. “Like that happened! Within three days of the first resident arriving, I was doing personal care. “I’ve done every role there is, which has given me an appreciation of what the guys on the floor are doing and what they're experiencing, particularly with this client group, because they can be incredibly challenging.

“When I visit the homes, although that has been restricted for the last couple of years, I will engage with the residents and assist with meal times. Some of the new staff can get a bit fidgety at me getting involved, but then they realise ‘Oh, actually, he can do this’. “I have a simple rule now when I'm employing somebody, because I've done every job in the company. I'm a generalist, and I can do pretty much everything. But when are we employing someone who's doing that job alone, I expect them to be better than I would be. “I think that makes a big difference, so we make sure we get the best, and that’s why we get the quality we have.” And that commitment to quality is continuing through PJ Care’s ongoing investment in its people, services and facilities. A multi-million pound, three-storey extension is planned for PJ Care’s existing 105-bed Eagle Wood care centre in Peterborough, named Richard Hicken House in tribute to Eagle Wood’s head chef of nine years who passed away in 2020. And keen to remain at the forefront of developments in care, the business is part of a pioneering study into how people can be supported through the use of technology, particularly through AI, and the positive impact that can make in their lives. “We are committed to investing in the business

and making it the best it can be,” says Neil. “It’s interesting when we meet with the bank and they say ‘Your EBITDA is low’ and I’ll say ‘But it’s as high as it needs to be’. “We pay everything we need to pay, and if we’ve got any more, we’ll put that back into the business. Of course I could buy a nice house in the south of France that I’m going to visit once a year, but that’s a bit of a waste. “So we keep the EBITDA low and put it back into the business. They might not get it at first, but it only takes me a few hours of talking to the banks and showing them what we do before they go ‘OK, I get it’. “You meet directors and senior managers from other companies, they’ve got their equity houses squeezing them because they’re not making enough profit, meaning they have to cut the amount of staff they’re paying, but then can't provide the care they need to provide. “For the smaller independent operators, they haven’t had the opportunity for the kind of structure my mum was able to put in place. “In both situations, it can be very, very difficult - but for us, and others like us, we are in a stronger position. “For us, we’ll keep pushing the boundaries of excellence, improving what we do and showing everybody else how to improve too, if they choose to follow. “That’s it, really. That’s what we’re about.”

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Shining a light o n H u n t i n g t o n’s D i s e a s e

Huntington’s Disease (HD) is a genetic condition affecting thousands of people across the UK, with every child born to a parent with Huntington’s having a 50 per cent chance of inheriting it. But while research is underway across the world, there remains no cure and the profile and understanding of HD in wider society remains low. 84

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Here, consultant clinical psychologist Dr Inga Stewart from specialist HD service provider St Andrew’s Healthcare, and forensic and clinical psychologist Dr Vincent Harding, share their expertise to explain more about the disease, its symptoms and how they manifest, how patients can be supported by clinicians and families alike, and why personcentred care is so important to enabling someone to be able to live well with HD

What symptoms could we routinely expect to see in someone living with HD? Dr Inga Stewart (IS): If you think about HD with the triad of cognition, movement, and also changes in mood, then you can imagine how HD can affect every aspect of somebody's life. It can have an impact on their levels of independence, but also their social relationships. And as the disease progresses, then this can become more profound.

Dr Vincent Harding (VH): The span from the onset of symptoms tends to be around 15 to 20 years, however can be more or less. The onset of symptoms is most typically during middle age, between the ages of 30 and 50. There is a juvenile form of HD, which is when a person is affected before the age of 20, and that tends to progress more rapidly. The trajectory of HD tends to be quite long, which means we are able to work together to maximise functional independence and quality of life.

IS: I think it's important to note that although you have this collection of symptoms with HD, when you've met one person with HD, you've met ONE person with HD. There are commonalities, but everybody is individual. And so therefore, everybody needs to be treated as an individual. But there's always an acknowledgment that it's a progressive neurological condition, so it will get worse over time and those living with HD and supporting people with HD will need to adapt to change.

Is early intervention important? IS: I would always advocate that people seek support as early as possible, because there's a combination of getting the right support in early but there's also the opportunity to think about your future and to think about advanced wishes that you might want to make, knowing that it's a progressive condition. It also enables you to consider the support that’s out there. We have organisations like

the Huntington's Disease Association (HDA), which is a fantastic resource, because there's lots of information there and access to support.

VH: I think it's about having the right support at the right time, what is right for that person. There is no one approach or ‘one size fits all’. We do this holistically, in a person-centred way, by working together as a team with the person themselves at the heart of it. We're thinking about those things from day one, working collaboratively with the person with HD, and thinking, What's important to you? What are your goals? And what are your wants in life? How can we support you by working with you?

W h e n yo u ' ve m et one person with H D, yo u ' ve m et ONE person with HD. There are commonalities, but everybody is individual, so everybody needs to be treated as an individual

Is it possible to still have a fulfilling life after an HD diagnosis? IS: It’s very important to know that that you can live well with HD. If we make the right adaptations and provide the right support, then somebody can have a really fulfilling life.

VH: A big part of living well with HD is about planning for the future and being able to adapt to change with support. But that's no easy process in a lot of cases. It takes time and it's about adjustment to change. It can be quite a process for the person to be able to adapt to changes in their life and make reasonable adjustments so that they can still live well and have a good quality of life.

How important is a person-centred approach to HD care and support? IS: Co-production is how we describe it, working with people as equal partners, and that is the approach we take. You've got the care team, the person living with HD, and the people in their lives - carers, family members - who are partners in care. We're always trying to work together. As one example, it could be about an advanced decision about PEG feeding (a PEG allows food and fluids to be put directly into the stomach through a flexible feeding tube). People with HD are at risk of developing dysphagia, which is difficulty swallowing. So on a day to day basis we’ll work with the speech and language therapist to support with communication, eating, drinking and swallowing, the dietician for food and nutrition choices, the occupational therapist might be looking at what equipment can help the person eat as independently as possible, their routine and learning ways to adapt to changes, the physiotherapist might be working on posture and positioning, and they’ll also be supported by the wider team. Psychologists will also be involved in looking at someone’s capacity to make an advance decision, and then we can support that person in co-creating their care plan for the future. We can support them in starting those conversations and looking at what their future may look like. We’ve worked with more than one person who has made the decision that they don't want to be PEG fed in the future. So working around that, we can create risk feeding care plans, which means that we support somebody to be able to eat the foods that they like in the safest way that they can. That is a decision for the future, but we're working with somebody in the moment to be able to do that.

VH: A big part of our role as psychologists is not just about direct work with the person with HD, but it’s the indirect and systemic work with the whole clinical team, providing regular spaces for reflective practice and formulation sessions. This gives us an opportunity as a team to ‘sense make’ of what we're seeing and how we're responding to it, and what the right approach looks like. But we also bear in mind that the right approach can and does change over time as we flex to meet people's changing needs.

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What are the mental health challenges for someone with HD? VH: People who come to us, often will have comorbid mental and physical health conditions alongside HD. So in terms of mental health conditions, that can often be anxiety, depression, sometimes symptoms of OCD, and sometimes psychosis. Again, it's making sense of that person's individual experience. We do that through a formulation-led approach, co-produced with the patient and their families and friends. It's almost putting the pieces of a puzzle together which then informs the evolving care and treatment plan.

IS: Somebody might have had traumatic experiences or difficult times that have not been directly related to symptoms of HD, so we need to give attention to that separately, but also consider how it fits in with the person’s whole experience. But the other factor is that HD is an inherited condition, many people living with HD have witnessed relatives already live and potentially die with HD. And so you can think about the impact that that might have on somebody's lived experience. Finding out that you have not inherited the condition is also not as simple as people might initially think. I think you learn to never make assumptions about how life might be for someone affected by HD. So here, you’ve got the psychological reaction to having a diagnosis or to being at risk of developing HD, which may cause further anxiety and depression, but you then also have the changes to the brain that are happening as a result of HD, which can also cause mental health challenges. So you have the mix of organic changes to the brain, and also the psychological experience, all mixed together.

How important is the Life Story approach that St Andrew’s use? VH: I think it is very important. We use the Life Story Book as a form of narrative therapy. As soon as a person comes to us, we're having those discussions about the person's background, their life, their career, achievements and any special moments in their life. We use that to help contextualise that person, their experience and what's important to them, and get that down on paper. Because, as a team, the better understanding we all have of that person, the better we can support them. But we also need to be mindful that a person's needs and wants can and do change over time. So just because that is their history, we have

to remain flexible in working with them. These are live stories, so works in progress. Wherever appropriate, we will involve that person's family and friends in sharing the story, so that we get the best possible understanding.

IS: We want to see the person first, not the HD. They are a person who happens to have HD. So if an individual's communication should be affected, or their memory, it means that doesn't need to negatively impact building relationships with other people in the future. So you might have somebody in the later stages of HD whose communication is very poor, and sometimes gets to a point where they can't communicate at all. Something like the Life Story Book then becomes an advocate for who they are as a person. If somebody is new, like a new staff member for example, they can look in the book and understand more about the person and their life. I think it’s our responsibility to hold and protect that person's identity, which includes how many sugars they like in their tea and what music they love. Really important things which you need to understand, and which the person is relying on other people to anticipate to be able to support them.

Working with people who may have behaviours that challenge is a key area of expertise at St Andrew’s, within the context of HD care how can that be best approached? IS: Communication is a big part of it and is very important in ensuring that the person has a good quality of life and positive wellbeing. What we might see, for example, is that if somebody's communication is really affected, they might communicate their needs through behaviours that other people see as challenging. So, for example, if somebody gives you a big woolly jumper because it’s cold outside, they will no doubt think that’s the best thing to do. But if actually you get quite hot, but you can’t communicate that, you might physically resist having the jumper put on, and that could be interpreted as behaviour that challenges. Actually, all you're doing is communicating your need, which is ‘I get hot, and that great big jumper is going to be too hot for me’, so that's where you really need to know the person. It

might be that we know that person tends to feel hot, and therefore doesn't need to be wearing a big woolly jumper. When communication is a challenge, and a person’s information processing is slowed, it’s important to pause after you've asked a question, and give them time to think about what you've asked and to provide an answer. You do have to wait, and it can feel like quite a socially awkward amount of time. For example, if you said to somebody; ‘Are you thirsty?’, and you don't get a response straightaway, you then might say, ‘Would you like a drink?…you can have a hot drink or a cold drink… you normally have a cup of tea, don't you? Would you like a cup of tea? Would you like two sugars? If the person says ‘Yes’, you then have no idea which question they’re answering. And that can be incredibly frustrating for them. You have to ask your question and then you have to wait, it could be for 60 seconds or more, but you have to wait. A big part of this is understanding who the person is, holding their identity and supporting them to feel like themselves. Supporting their personhood is crucial. The examples of the jumper and the tea are the kinds of things that might keep somebody in hospital if they are presenting with behaviours that challenge, but if you get the communication right, it can really help with their discharge.

VH: There is a phrase put forward by Jimmy Pollard, who is well known in the HD community, which is about being able to hurry up, but also to wait. So in terms of the hurry up, it's that we need to be able to anticipate somebody's wants and needs and meet them in a timely way to support them with their perhaps impaired ability to plan, problem solve and reason, to tolerate frustration and to engage in consequential thinking. But with that comes the need to wait. So when we ask a question or make a statement, we need to give that person the time they need to process and respond.

IS: Structure is also really important for someone with HD, but you need to have flex within that structured day. So you might have somebody, for example, with a brain injury who has a structured day, and it's really

I t ’s v e r y i m p o r t a n t t o k n o w t h a t t h a t yo u c a n l i ve we l l with HD

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important for their rehabilitation that they do the same thing each time, and that structure helps them learn what they need to re-learn. Whereas with HD, you want to have that structure, but if you're too rigid with it, you will cause distress and amplify cognitive impairment, rather than trying to minimise the impact of cognitive changes. Another factor is something we call the frontal lobe paradox. Here, it can be that through planning, the person can come up with a really great strategy of how to manage a situation in the future - but in the moment, their ability to action that plan was reduced, or disappeared entirely. They can ‘talk the talk’ but not ‘walk the walk’. Like the idea of ‘hurry up and wait’, it can feel contradictory to those supporting the person with HD. That’s where the understanding of that person and of how the condition manifests is so important, so we can support them as best we can. We use Positive Behaviour Support Plans with all of our patients, which in addition to the Life Story Books, helps to give the information the team need to support people in their lives. These plans are ever changing, depending on a person’s changing need, and we’ll do everything we can to co-produce these plans.

Is there enough awareness of HD? IS: If you think that there are around 850,000 people with dementia within the UK, but less than 10,000 people with HD. So it's a really small proportion of people. But I think it has helped showing a character in Casualty living with HD, and we’ve seen more in the news recently, some headlines around the research. There are some big international research projects underway to look at halting the symptoms and progression of HD, and ultimately finding a cure. But when it comes to research, we see a lot looking at genetics and medication to treat and hopefully eventually cure HD. But we don't have a cure now, and we don’t have a lot of research into how you manage HD while you find that cure. So I think the psychosocial interventions as opposed to the pharmacological interventions are an important area where progress would be very valuable.

VH: The research field is growing, but there's still a need there. We need more in terms of the psychosocial experience of having HD so we can promote a person living well with HD. And again, what it means to them, and what support they require, not just in terms

of pharmacological treatment which might manage some of the symptoms, but the experience of living with HD and how to live well with HD.

A loved one reaching the point where they need inpatient care must be a significant challenge for families? VH: Wherever appropriate, and wherever agreed, we actively support families and friends to remain involved with the person at every step of the way. When we think about contact, we think about how often do they want to maintain contact? And what does that contact look like? So it's about giving people opportunities, choice and control, both for the person with HD, and for their family and friends.

IS: I think a contextual factor is the experience of being admitted to hospital. Some people can feel they want to be in hospital and feel safe and empowered by the fact they're getting specialist support, and other people don't want to be in hospital, they want to be back in the community with their families. This helps to show the need to support both them and their families through all of that. I imagine it would be really difficult for family members who might not want their relative to go to hospital, but know that they need to, and that must be very difficult to manage the opposing feelings. Somebody might feel a real sense of distress, but also a sense of relief all at the same time.

Does St Andrew’s play a role in bringing families together? IS: At St Andrew’s, we’re very interested in creating support for family and friends and looking at how we can develop that. We’re a national resource, so do have people coming to us from across the country. For that reason, we do tend to signpost them to support within their local area, and of course the pandemic has posed problems as we haven’t had any family events during that period. But I do think the opportunities for virtual connections presented by the pandemic, to bring people together online, are exciting. That wouldn’t require everybody coming down to Northampton and could really help with peer support across the country. So that’s something we’re looking at. To find out more about HD services at St Andrew’s visit: stah.org/HD

P AT I E N T S T O RY

How Ben continues to defy all odds Through two undiagnosed life-threatening illnesses, Ben has been left with life-long physical and cognitive consequences and relies on the full-time care of his parents. But from such trauma has come hope, with the ten-year-old continuing to amaze medics with his progress. NR Times meets the inspirational family

After almost losing his life twice, and living with the consequences of a double leg amputation and significant brain damage, ten-year-old Ben has been through more than most in his short life. But despite the huge trauma that has faced he and his loving parents, Sally and Dan, they are all looking to the future with renewed confidence. Having come close to death through meningitis as a baby, and then again after sustaining significant cognitive and functional damage through a cardiac arrest - which medics were so certain he would not survive, they allowed him to return home for palliative care - six years later, Ben is now thriving with the support of his therapy team. With regular visits to his physiotherapist and occupational therapist, he is making strong progress, and is even looking towards being fitted with ‘stumpie’ prosthetics to allow him to stand. Despite the fact that the profound brain damage and physical impact has left Ben severely disabled, with a reduced life expectancy and the likelihood he will never have mental capacity, the family continue to find the positives in every day - and particularly in how Ben continues to defy all expectations.

The outlook now could not be more different to those few short years ago, when Sally and Dan were twice warned their beloved son may not make it. “This is the happiest we’ve been in years, Ben is doing so well, it’s amazing how far he’s come,” reflects Sally. “He’s now just happily doing his thing, he is totally the boss in our house, we wouldn’t have it any other way. “But it’s been a long road, looking back on it. At the time, you just get through it because you have to, but recently I was looking through some of the things I’d kept from when he was in hospital and honestly don’t know how we did it. “On reflection, it was the most horrific thing anyone could imagine, and some of the things we saw and had to experience were things no parent should go through.” And for the family, the trauma of what happened to their son is made all the more horrific by the fact on both occasions, medics failed to realise the gravity of Ben’s illnesses until it was too late. With meningitis, in 2012, Ben was sent home from his local hospital with a supposed ‘viral infection’, despite the beginnings of a rash

beginning to develop - only hours later, he was rushed back to hospital, and transferred to Great Ormond Street due to the gravity of his situation. He spent three weeks in intensive care, and more than three months in the specialist centre in total, where Ben - only eight-and-a-half months old - underwent the amputation of his right leg above the knee, his left leg below the knee and part of his right hand. “I’ll never forget that image of him after we took him back in, having known something was wrong all along. He was lying there, he was huge through being pumped with water, his skin was black. It was like a nightmare. I’ll never, ever forget it, and we’ll never get over it,” says Sally. But while Ben’s outlook was initially bleak, his recovery stunned medics. After discharge and once he settled at home, he began to progress with crawling and talking, and began attending school. Cruelly, it was just as the opportunity came to be fitted with prosthetics that tragedy again struck the family in April 2016, when Ben began to be affected by a number of problems, from sickness to lethargy, none of which were

P AT I E N T S T O RY

It has been a very hard road, but after we got through that first year and Ben found his new pathway, we have been able to feel much more confident

considered to be serious. This went on intermittently until November. “Every time we went in, they could never get his blood pressure on the machine, but it wasn’t followed up and we didn’t realise how important that was,” says Dan. “He was still having ongoing treatment at Great Ormond Street, and when they realised there was no blood pressure readings, they insisted they did it manually. “When it came back as 280, they didn’t believe it, they said it was too high for a child’s blood pressure. It was only when one of the doctors tried the machine on herself and it was accurate that all of a sudden the panic set in.” Through undiagnosed and untreated hypertension, Ben began having seizures which resulted in cardiac arrest, and, in a chilling echo of four years previous, again he was rushed to Great Ormond Street. “That’s when all the madness started and there were sirens and people running in from nowhere,” says Sally. “It felt like he was being treated forever. The next time we saw him was in intensive care. He didn’t look like Ben anymore. We were

warned that the worst might happen.” Following his cardiac arrest, Ben was left with severe brain damage, renal failure, and profound cognitive and physical disability. MRI scans laid bare the level of brain damage Ben had sustained, and provision was made for him to return to a hospice near his home. “But by now it was 12 days before Christmas, our Great Ormond Street consultant was amazing and she said we could go home. Ben wasn’t well enough to go home, but given the circumstances, they allowed us to take him back home for him to pass away,” recalls Dan. But incredibly, since that time, Ben has made an astonishing recovery. Not only getting through Christmas 2016, but continuing to progress since that time, to the point he has reached today. “I remember going to one appointment and the doctor was looking at his scans. She said ‘I take it this child passed away?’ She couldn’t believe he had survived with the level of damage there was,” says Sally. “It has been a very hard road, but after we got through that first year and Ben found his new pathway, we have been able to feel much more confident. “Genuinely, he has defied expectations and he’s continuing to do really well. He is interacting with us, he understands things, and the therapy is making a huge difference.” Forced to endure repeated hospital visits for various conditions and complications over the years, Ben has been home-schooled since the outbreak of COVID-19 in March 2020, and has not been to hospital at all during that time. Both parents have given up work to care for him full-time, ensuring they can be together all the time, supporting each other in the process. “Ben is what gets us through, he’s the reason we cope and why we can do this,” says Sally. “But the worry is constant - I wake in the night all the time to check he’s still breathing, that nothing else has happened. I won’t leave him and have a lot of issues around that. “I don’t think we’ll get over what we’ve been through, I don’t think it will ever leave either of us.”

Both Sally and Dan continue to be haunted y the wish they had pressed medics more on both of Ben’s serious illnesses, but instead trusted the advice they were given by doctors. “You wish so much afterwards that you’d challenged what they’d told you, but you trust that the doctors know best,” says Dan. “There are times looking back when I knew we were right, but because the doctor told us otherwise, I believed it. “And while most of the time the doctors will be right, if you have any doubts or concerns, you need to speak up about them.” “I’d say push for answers to the questions you have, don’t feel silly or like a persistent, pushy parent. Keep asking if you’re concerned about something, ask another doctor,” says Sally. “It’s so hard for us now as we see parents being told their child has a viral infection and instantly you wonder if that’s all it is, should they be pushing to see if it’s something more? People say knowledge is power, but I’m not sure that’s always true - it almost feels like we know too much after all we’ve been through. “For example, we were asked to sign a Do Not Resuscitate when Ben had his cardiac arrest - but after all he’d been through, and how he’d fought and fought and come through since he was a baby, we knew our son. Despite the advice, we could never sign that. You know what’s right for you. “I’d say never feel stupid, never be afraid to ask questions, and do what feels right.” The family are being supported by Emma Doughty at Slater + Gordon Lawyers, who is acting for them in their claim against the hospital which failed to diagnose Ben on both occasions. She took over their claim from another law firm. “We’re so lucky to have Emma, she’s been absolutely amazing,” says Dan. “We’ve only known Emma for a short time, unfortunately we went to another law firm initially and nothing happened for a long time, but Emma has made things happen so quickly. We’re so grateful for her help.”

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Mental health and the patient, family and care provider While ‘mental health’ is now a phrase used regularly and widely in society, how many of us prioritise it for ourselves? But, as Breakthrough Case Management discuss here, the need to consider mental health is absolutely vital in rehabilitation for both the injured person and their family - as well as for those tasked with delivering the life-changing care Now, more than ever before, the focus is firmly on mental health. As something that impacts everyone in society, and the struggle with isolation and lockdowns leaving few of us untouched over the past two years, mental health is something that is rightly now in wide discussion. But, in reality, how many people are actually looking after their mental health? Is the awareness translating into action and support? Certainly, in rehabilitation, the need to consider the mental health of someone living with lifechanging injury is paramount. Research clearly links the failure to do so with a limit on the progress they make in their physical recovery. For their family and loved ones too, the impact on their mental health of their lives being changed beyond recognition is vast. But for those case managers, clinicians and care workers whose role it is to support these people, to maximise the recovery potential of their loved one, their mental health is seriously under pressure too. With an ongoing recruitment crisis into social care and burnout and people leaving the profession being at an all-time high, are they considering themselves at any point? “Mental health affects absolutely every one of

us,” says Kate Golding, a leading figure in infant, child, adolescent and adult mental health nationally, who recently joined fastgrowing Breakthrough Case Management. “We all need to take some responsibility for it. We've got to be personally accountable and do as much as we can to stay well ourselves - but amidst life in general, sometimes the mental health needs we all have can be overlooked.” “After life-changing injury, the lives of people and their families will never be the same, their children’s lives are turned upside down overnight, and the injured person’s life as they knew it has changed beyond recognition,” continues Annabelle Lofthouse, co-founder and director of Breakthrough, which was recently rated Outstanding at its first CQC inspection. “And for those working in healthcare, whose job it is to support them, their mental health needs attention too. While they will always look at things from a client perspective, they need to think of themselves too.” Here, Kate and Annabelle discuss the vital role of good mental health in the patient, their family and the care professional, and the steps that can be taken to maximise our emotional wellbeing.

Patient Following a traumatic brain injury, given the challenging circumstances in which most people find themselves and the rehabilitation journey they often need to embark on, it is understandable that a significant proportion of survivors will experience a decline in mental health. “But this is against a backdrop of one in four people being diagnosed with a mental health issue at any time, even without brain injury,” says Kate, who is a national trainer for Mental Health First Aid England. “A traumatic brain injury is going to dramatically increase your likelihood of mental illness, and that is including things like mild head injuries or concussion too, which affect one in three of us at some point in our lives.” But while it is so commonplace, why is mental health not always given the same prominence as physical recovery, particularly in lifechanging injury? “You can't measure mental health in the same way as you can a broken bone, but we're finding more and more that there are links between the body and the mind,” continues Kate.

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“There are lots of ways the brain can be affected by a traumatic brain injury, some directly through physical injury, and some psychological, but they both cause the brain to not be working as it should. “It's much more difficult to quantify because you can't see it, but we absolutely need to give it some priority and focus.” “So many of our clients suffer greatly as they come to terms with the changes to their life,” says Annabelle. “The impact of life-changing injury is huge; how do you even begin to understand how difficult it must be to be able to do something one day and then you can’t the next? “At Breakthrough, we absolutely understand the connection between physical and mental health, which is why we prioritise both - for rehabilitation to be successful, and for us to achieve the outcomes we do, it’s essential to progress the physical rehabilitation and recovery, while supporting mental health at every stage too.” Mental Health First Aid England (MHFA) framework of support, for those who are trained to offer it, follows the ALGEE model: Approach, assess and assist for crisis. Listen and communicate non-judgementally. Give support and information. Encourage appropriate professional support. Encourage other supports “These are really vital steps to take by anyone supporting a person in crisis who has completed MHFA training, and Mental Health First Aid England are really helping to drive this forward,” says Kate, who regularly attends Parliament in helping to inform mental health policy. “You will get all the information you need if you listen, and you hear what they're saying or what they're communicating. If they can't communicate verbally, you need to be keeping records of behaviours which are also a form of communication. “Just let them tell their story, let them start to talk and encourage it, and offer reassurance and compassion towards them for doing so. “It might take time. It’s about building a trusting relationship which you have to take time to nurture and develop. Sometimes people will open up straight away, others take many, many months, or even decades to get the point where they trust you completely. “But that reassurance they will get from your support and through standing by them, giving them the information to help them make informed decisions, is so important.”

Family While after life-changing injury, naturally, the rehabilitation efforts are focused on the injured person, the impact of this seismic change to the life of the whole family should not be underestimated. For a husband or wife left to pick up the pieces and attempting to rebuild their family in the best way they can, while also supporting their loved one in their recovery, that can be overwhelmingly distressing - and the impact on children, who struggle to understand and comprehend what has happened, potentially even further-reaching. “The effects within the family dynamic are significant,” says Annabelle, who co-founded Breakthrough with fellow director Catrin May. “Often the focus is on the injury and the injured person, and not the wider effects on the family, but these wider repercussions can be immense, because life is often never the same again. “I know some people say that children are the most resilient of all, but I’m not so sure I believe that, I think that’s quite old fashioned dogma. “As humans, we are adaptable, just look at what has happened in the past two years with the Covid 19 pandemic. But I think for children to experience something so traumatic happening within their family, it can leave a legacy they carry into adulthood. “For a child, if mum or dad has a brain injury, and they don't seem like mum and dad

anymore, it’s very unsettling. The environment in their home often changes, perhaps there are also physical adaptations to the home, and that can be very difficult. “Holidays change, activities change. Where dad used to always play football with them in the garden, maybe now dad can’t play football anymore, perhaps he doesn’t know what a football is. The legacy of that for a child is enormous.” “At the time of the injury, there will be lots of stress in the house, and anxiety spreads,” continues Kate. “Quite often you'll see changes in a child’s presentation following something catastrophic happening to a parent. It might be behavioural, it might be emotional, it might be fear, terror that they're going to lose the other parent, or they might become ill. It’s very distressing.” Statistics show that 75 per cent of adult mental illness starts before the age of 18 - which helps to illustrate the need for support for children during such traumatic times. For Kate, who has worked in healthcare since 1998, she has her own tried and tested strategies of support, which are equally as relevant to adults as children. “I focus primarily on five key areas, I always call it Kate's Hands with children because I get them to draw around their hand - we look at diet, exercise, hobbies and interests, relationships, and sleep,” she says.

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“And when you look at it, all five key areas can be fundamentally affected by this life-changing event. We need to address all of them. “For young people, sleep is probably an easy one to start with. You can look at getting those routines sorted out, having wind down time, trying to get that back. See if friends and other parents can help with taking them to clubs, which can ease the time pressure on a parent. “There are all kinds of tweaks we can make without having to go to CAMHS or a counsellor. We can all make little improvements. If they don't work, that is where you then would step it up to counselling. “But the trick we're missing, I feel, is getting those basic things right.” For adults too, the five areas are really important, although most will probably admit to overlooking their own mental health needs to focus on their injured loved one and the welfare of their children, says Kate. “You need to look at how is the parent’s diet going, and how is it for the kids? Probably not very good if mum is in hospital and dad's trying to support things as best he can. It’s not surprising if maintaining a good diet starts to slip,” she says. “And with sleep, that can be hard after such a life changing event. Is dad able to get out socially? Is he getting some time for him? “We all know that when we’re busy, hobbies and clubs are the first thing to become a lower priority. Relationships can also really suffer under the pressure of everything else. “If we can look at the five areas, and sometimes the quite simple changes you can make to get some improvements back into your lives, that is a great place to start.” Healthcare workers In helping to rebuild lives and families after catastrophic injury, clinicians and care workers play an invaluable role - but working in a sector which is under immense pressure, with an estimated and growing shortfall of 80,000 professionals, their own welfare is a major concern. “Social care is literally, as we know, on its knees. We work hard anyway, but I think the last few years, the stress of working within a system that actually is so under-resourced, does start to take its toll,” says Annabelle. “It's very worrying for those of us who are very experienced and know what good care and good support looks like, we are witnessing a drop in standards and that’s both upsetting and frightening. “People do incredible things looking after and on behalf of their clients, but working in a system without the resources, or the staff,

or the training, it’s no wonder that people are just burnt out. “And amidst this, we aren’t getting the chance to look at the work we’re doing, to reflect on the amazing impact we’re making, the fact we’re showing what great support looks like. And that impacts on mental health massively. “I think if we had a room of 100 health care professionals and you asked, ‘Do you prioritise your own mental health?’ I’d be surprised whether any of those 100 said they did.” With efforts ongoing for more support and recognition from Government for the social care sector, and change certainly not going to happen overnight, what can employers do to help the situation? Kate is a passionate campaigner for Mental Health First Aid to become mandatory just as is physical first aid, which is one step she believes should be taken. “What we want is for it to be mandated, so it gets parity of esteem with physical first aid training. We want every workplace to have a mental health first aider, as well as a physical one,” she says. “We're lobbying Parliament for that at the moment, and interestingly, the House of Commons are very keen to have it provided within House as well, to support their own members. “For me, it’s about role modelling and leading from the top, having that culture embedded within your organisation - so you're taking care of yourself, but you're also taking care of your staff. “So, on an acute medical ward, it could be that the break times are written on the board, so a member of staff knows when they're going to be taking their break. “Or things like having bowls of fruits out for people to help themselves, which might sound silly, but it's so important for your mental health to be healthy and look after yourself physically.”

Supervision and the need to offload and share experiences are vital, Kate and Annabelle agree. “I was a nurse in A&E for 10 years and not once did I have any clinical supervision. But in mental health, I used to have three hours a month, peer supervision with a psychiatrist,” says Kate. “We bring cases along and talk it through with peers, who would either give praise for how well we were managing it, or maybe say something hasn’t gone so well, how about trying it like this? “It’s good for people in a really safe environment to question why you’ve gone down this path, why you’ve made this decision, as it gives us all a chance to improve, develop and grow through sharing common experiences because you’re all from a similar background. “Through sharing experiences with MDT colleagues, you end up developing loads more skills, which you pass on to the patient. “But in terms of your own mental health, it keeps you contained and safe within your role, which means that your brain is then freed up from the level of worry and self-doubt you may have otherwise.” Annabelle continues: “A lot of healthcare practice is carried out in isolation, case managers spend a great deal of time working on their own. “And as busy as you are, you’ve got to prioritise clients, but it's so important to have that protected time to interact with colleagues and have those discussions. “It's good for Catrin and I, as directors, to make the time to meet every week, just us, to run through cases, things we've picked up on supervisions with staff and case managers, and question whether we’ve handled things the best way we could. And we’ll learn from that. And that then influences and improves the continuing support we ensure all the team benefit from. “By embedding a culture, you really are learning from absolutely everybody, and then you have more confidence and ability in your own job.” For Breakthrough, the wellbeing of staff is at the heart of its offering, with initiatives such as the Cycle to Work scheme running alongside supervisions to offer support with wellbeing. “It’s down to individual company culture of course, but for us, we really recognise the value of supervision - not just for carers as that’s a CQC requirement, but it makes good sense and good practice clinically that we offer it to Breakthrough case managers and teams working with us,” says Annabelle. “Rehabilitation is certainly not an exact science, and the recovery process is not always straightforward. Sometimes, as professionals, we just need the opportunity to offload and talk about things - and we need to recognise the value of that and make time for it.”

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Music Therapy offers a unique outlet for addressing psychological issues and emotional expression When talking therapies do not work, therapeutic song writing provides clients with the voice they desperately need.

Song writing enables clients to process difficult or traumatic memories, through writing, providing a less daunting way to approach complex subjects. Alex Lowman, a qualified Neurologic Music Therapist at Chroma, implements song writing into her music therapy sessions with clients to support their emotional expression. Because song writing activates the part of the brain associated with emotion processing and regulation, the process allows clients to explore difficult memories and emotions in a less overwhelming way. Once a song is complete, the client and therapist can return to it at any stage and explore further if necessary. Lyrics can uncover painful memories or emotions that the client has had trouble facing. Being able to explore the lyrics together offers the client a safe space for emotional expression. Therapeutic song writing can also help to improve a client’s mental wellbeing and as a result, increase self-esteem and self-expression. Improving mental wellbeing allows the client to feel more comfortable to express their thoughts and feelings during subsequent sessions, supporting opportunities for continual progress throughout the healing process. Working with a young woman - client A - born with near total hypoxic-ischaemic encephalopathy,

Alex uses song writing to gain a deeper understanding of her clients’ mental wellbeing. Lyrics provide a window into A’s mind-set allowing her to explore the emotions and themes within those songs. This process helps the client confront and process emotions too difficult to face alone, effectively supporting mental healing. ‘A’ enjoys song writing, and studies drama and theatre singing at a performing arts college. Her goal was to record songs she had written in her songbook. Alex also encouraged the client to develop her executive functioning skills though basic learning to play an instrument. Organising sheet music then translating the information to being able to play a note and then a tune, she then learnt to sing and play at the same time, which is a complex skill. The client was also able to retain the information she learnt one session and use it in the following session, which was rewarding for the client, helping to build her self-esteem further. Alex witnessed the client demonstrate numerous transferable skills such as initiating the songs to work on, the instrument she wanted to play, if she wanted Alex to accompany her, all of which lent themselves effectively to improving self-esteem, confidence, mental

wellbeing, her quality of life - and of course, her performing arts college course. In the final music therapy session, the client went on to record five of her own songs in a recording studio and was able to perform them confidently. Commenting on the experience, neuropsychologist, Dr David Quinn, said: “In a recent case I have been working with, music therapy provided by one of the Chroma therapists has opened unique possibilities in terms of occupation and career, social communication skills and artistic expression. As a team, we had the wonderful opportunity of seeing our service user perform her own music for the first time, it was a striking and wonderful moment in her therapeutic journey.” Alex said, “Working with this young woman has been an amazing experience. She is clearly versed in music and the arts, which lends itself nicely to music therapy. She responded well and I hope that now the college is aware of her musical abilities, that they can provide more support in order for her to continue to excel in music.” For more information on Chroma’s work go to www.wearechroma.com, call 0330 440 1838 or email: sayhello@wearechroma.com.

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Benef its of Dramatherapy for people living with a Traumatic Brain Injury (TBI) Traumatic Brain Injury survivors suffer cognitive and functional impairments. Katy Weston is a experienced Dramatherapist at Chroma working with TBI survivors. Recently, Katy began working with a client who sustained a catastrophic brain injury. The client is non-verbal, uses a wheelchair full time, requires support for movement and has a vast support network. Dramatherapy (DT) was introduced with the intention of helping the client develop a strong voice in terms of access to communication options and choice making, as well as to enable the client to expand emotional expression, and allow time and space for a range of feelings to be shared. The intervention also offers the space for the client to choose how to structure therapy time, for example being active, relaxing or listening. Furthermore, the sessions provide music-led intervention to support motor skills including the use of rhythm to promote movement. Initially, DT was implemented to identify whether the client would respond to drama as a treatment modality. To date, the client has become more comfortable and open to Dramatherapy techniques and actively tries to stay engaged and alert even when fatigued. Above all else, the client is finding their voice and knows they are respected. Dramatherapists aim to find a way to connect with their clients – to find a language that works for both of them and that provides them with a way to connect. The connection allows for a more successful therapeutic outcome. Katy implements props into sessions to help determine a client’s emotions, thoughts and feelings that day to decide which way the session will go. For instance, introducing Winnie the Pooh characters to clients in a dramatic manner - imitating their typical emotion (Tigger – happy, excitable, Eeyore depressed, lethargic etc) to help clients

determine which character best describes their own feelings at that time. It is a simple, yet effective way to determine whom they connect with and she is better able to guide the session from there. Sessions can also involve techniques such as verbal or non-verbal creative play, body work, playing games, memory games, Theraplay (attachment work) and Sherborne Movement to name a few. DT offers TBI survivors a safe space to express, explore and come to terms with the event surrounding their injury – the loss of self, and enjoy memories prior to the acquisition of brain injury whilst still being able to process emotions in the present day. TBI survivors should be able to make decisions in their life where possible. Dramatherapy provides clients with the space to feel empowered so they know, even though they are non-verbal or physically impaired, they can still have an opinion on their life, such as being presented with choices on where to sit instead of just being ‘put’ somewhere. For those living with a TBI, Dramatherapy lets them know they are respected and empowered, providing them with a voice where there are, more often than not, no words.

Dramatherapy offers TBI survivors a safe space to express, explore and come to terms with the event surrounding their injury

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Def ining occupational therapy….and redef ining client outcomes Through its commitment to rehabilitation, with clients achieving things they thought no longer possible, Think Therapy 1st rehabilitation services are shining a new light on Occupational Therapy and its crucial role in ‘enabling’ clients, rather than ‘compensating’ for lost abilities. NR Times learns more about its mission to secure appreciation for the profession, while also redefining its capability, and how its focus on functional restoration is enabling it to deliver expectation-busting outcomes. The term ‘Occupational Therapy’ is something that many people, even those working within neuro-rehab, frequently misunderstand. While ‘occupation’ is a word most commonly associated with a job or profession, in rehabilitation, ‘occupation’ essentially refers to every activity in a person’s day. In that context, an Occupational Therapist then guides people through those ‘occupations’, using the activities themselves as treatment, with focus always on meaningful goals and measurable outcomes. Yet despite such a wide-ranging and vital role at the heart of a person’s recovery, Occupational Therapy is still not properly understood or appreciated, believes Helen Merfield, chief executive of Think Therapy 1st. “People don’t really understand what

Occupational Therapists (OTs) do, they don’t understand the breadth of what an OT does, and the word occupation doesn't help because everyone just thinks of work,” says Helen, who recently became TT1st chief executive from her previous role of managing director. “Everyone just thinks it's about getting you back to work, but they don't realise that it's actually about getting your life back together, and helping you live your best life.” A recent session TT1st held with a group of legal and insurance professionals helped to showcase that exact point - asked at the beginning of the session to write down words

they’d associate with occupational therapy (OT), their use of vocabulary had changed entirely by the end, having learned the value of the support and empowerment delivered by an OT. “Essentially, we cover everything from tying your shoelaces and brushing your teeth, to doing your job, raising your child and even running a marathon,” says Penny Wosahlo, newly-appointed managing director of TT1st and a qualified Occupational Therapist, previously director of finance and operations. “But people are not one dimensional. You cannot fix a leg without using your brain to plan the physical movements, and you cannot ask your brain to do that without having the motivation and confidence to make change. “Your psychological and emotional needs, your cognitive and physical needs must all be aligned and co-ordinated. “But then you need to understand that people live in their own unique worlds, in societies and cultures which are all complexly interlinked to their needs.

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What three words do you associate with Occupational Therapists? BEFORE

Eve r yo n e t h i n ks OT i s a b o u t g et t i n g yo u back to work, but t h ey d o n' t re a l i s e that it's actually a b o u t g et t i n g yo u r l i f e b a c k t o g e t h e r, a n d h e l p i n g yo u l i ve yo u r b e s t l i fe

What three words do you now associate with Occupational Therapists? AFTER

“It’s the interactions between the environment, the persons components and the demands of the activity that an OT truly understands, breaking them down and coordinating them to make a purposeful therapy session. “An OT looks at all of this and figures out what the underlying issues are. Are they physical? Is it psychological? “Usually, it’s a mixture of these things, so we identify the key pinch points that are causing the person to stop doing the things they need and want to do. “We don’t address skills in isolation, we don’t just fix the leg, we fix all the components impacting on the life, some of which the leg provides” And while TT1st is keen to shout from the rooftops about the value of OT, its own approach to OT takes the traditional focus of the profession to the next level. In supporting a person with a life-changing injury, traditionally, expectations are often managed in their recovery to the extent they

are told they may never do something again. But for TT1st, they rarely treat anything as impossible, with their focus on delivering the seemingly impossible through evidencebased functional rehabilitation - rather than compensation - enabling clients to make progress beyond expectations. Through its array of programmes - including Specialist Rehabilitation Occupational Therapy (SROT), a specialist Children and Young Adult Service (CAYAS), Holistic Education for Living with Pain (HELP), Holistic Education for Anxiety Liberation (HEAL) and Fatigue Education and Exploration for Living (FEEL) - TT1st has a significant breadth of expertise available to clients whatever their injuries or condition, with a maximum of 12-months of functional restoration, such is their confidence they can deliver outcomes within that time frame. Natasha Bruce-Jones, clinical director, explains: “The scope of OT is so vast but often people only see what the NHS and local authority can offer and believe that’s all we have to give.

OTs are about so much more than equipment and adaptations. “We can empower people to be their own experts in their recovery. We can make rehab enjoyable. “One of our clients had therapy by learning to fly a kite on a beach, aware she was working on her physical recovery but oblivious to the gains she was making psychologically and cognitively as the OT tweaked and graded the activity to draw on these components too.” “Our OTs are amazing, they’re very much like OTs I worked with in the military. We focus on functional restoration, which is very similar to how they used to work at Headley Court, the Tri-services rehabilitation unit that is now sadly closed,” continues Helen, a former military nurse. “Absolutely everything we do is about rehabilitation, every activity is made into rehabilitation, nothing is wasted. Our progress and outcomes are measured by standardised assessments, and what we achieve is often beyond the expectations of the lawyer, insurer and the persons treating medical team. “They often don’t know how the magic happens, but they see that it does, so they let us get on with it, and come back to us time and time again. “Often, they will give us a chance on one case, and they are like ‘Blimey, that worked’. They get reports every month which show how much their client is improving, and they’ll send us another case based on our success. “We know what we’re doing, and we’re always willing to fight our clients’ corner - quite recently one of our OTs went with their client to see the consultant, and he said based on the injury that the client wouldn’t be able to return to the desk job he wanted. We had a training programme in place and were progressing well towards achieving exactly that. So, our OT, always an

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advocate for independence said: ‘You’ve done a great job helping him under the knife, but everything else is now up to him and me. Please don’t pigeonhole him into a ‘diagnosis’, he can and will do this.” Penny continues: “Everything we do is therapy, from taking the dog for a walk, to taking the client bowling, to ironing or cake making. We know what works. We will choose activities depending on the client’s injuries and their interests and hobbies. “Often, they don’t even realise they’re doing therapy. People get better quicker when they’re motivated and engaged in something, they don’t notice. “For example, we had a client with upper limb issues in a wreath making class. At the end of one session, she proudly held her wreath up - and then realised she could raise her arm!

Absolutely everything we do is about rehabilitation, every activity is made into rehabilitation, nothing is wasted

She was absolutely delighted at how she’d progressed, but didn’t even realise there was a therapy side to it, she was enjoying it so much.” Using the entire breadth of skills of an OT, coupled with its commitment to rehabilitation, TT1st is keen to take a lead in the multidisciplinary team. “Someone once said to me that if you take a nurse, a psychologist and a physiotherapist and smoosh them together, you get an OT,” says Helen. “Their training covers physiology, anatomy, psychology and psychiatry as well as unique OT skills making them a Jack of all trades but a master of Occupational Therapy. “They know their limitations and bring other expertise in at the right time - that’s why they’re such a good person to head up the MDT, they understand the role of everybody. “The OT is supremely set up to do that because they're in for the long haul. Other therapists will come in for a shorter time, but the OT takes the case from the beginning to the end, from the really acute to back to work.” “But one thing that really sets us apart I think, is that we don’t do anything for the client that they can do for themselves,” says Penny. “So although we're coordinating the MDT, we're role modelling to the client how to coordinate their life and using this as therapy too. After all, they will need to know who to go to and how to get help to manage their long-term health and wellbeing, long after settlement. “Our plan is to put the scaffolding in place so they can carry on the life they want to live, independent of us. ‘I don’t need you anymore’ is the best news we will ever hear.”

Helen adds: “We always help plan for the future with therapy contingency plans. If they have a life-changing event, like a baby, moving house, starting a new job, that type of thing, they will know who to call for advice and support. “If it’s us, great, they know they can contact us for the rest of their life if they need to but hopefully they won’t have to as we have set them up to be their own therapist ” Going forward, with Penny now overseeing the day-to-day running and supporting the longerterm growth of TT1st, Helen is free to press on with her desire to promote both OT and TT1st’s unique take on it. “I get so excited about our approach to OT and what these guys can do. But as well as showing people just why TT1st is different, why our OTs are so amazing, I want to help people understand what OT is and what we do - my big plan is to try and educate the market,” says Helen. Natasha says: “My entire career I’ve been looking for a way to make the world aware of OTs so we can help as many people as possible and now it feels like we are on the cusp of some enormous change and have the potential to bring independence and meaning to the lives of so many more.” Penny adds: “It’s very exciting for the whole team. As OTs, we are quite humble, and we don’t take the credit for our clients’ outcomes, we’ll put it back onto the client and the work they’ve done. “We couldn't shine that light on ourselves, we would feel uncomfortable - so to have Helen illuminating the way for us, and shining the light on OT, is brilliant.”

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‘My stroke is the best thing that happened to me’ H av i n g s u r v i ve d t h r e e s t r o ke s a n d m a j o r b r a i n s u r g e r y, B i l l G a s i a m i s n ow r u n s t h e Re c ove r y A f t e r S t r o ke p o d c a s t , w h i c h i n s p i r e s t h o u s a n d s o f f e l l o w s u r v i vo r s a r o u n d t h e wo r l d f r o m h i s base in Australia. NR Times learns more about h i s j o u r n ey t o g l o b a l l y - k n ow n p o d c a s t e r a n d s o o n - t o - b e p u b l i s h e d a u t h o r, a n d w hy h i s t ra u m a t i c e x p e r i e n c e s h ave h e l p e d h i m l i ve a b e t t e r l i f e Considering the huge trauma Bill Gasiamis has experienced as a result of stroke, the fact he hails it as a life-changing event in a positive way is something he admits is often questioned. “My stroke was the best thing to happen to me, definitely,” says Bill. “I’m looking at it from a post-traumatic growth place, because I’m not the same guy I was before stroke. “I’m a completely different version of myself upgraded and enhanced, even though I have deficits and neurological problems as a result of what happened. “I think it comes down to mindset. I’ve always been a ‘glass half full’ kind of guy, even as a young kid, I found the silver linings and always believed things were achievable. “But when I had my stroke, I realised now I have a lot of problems, a lot of challenges to overcome, and if I start to think negatively them I’m probably a goner. “And that inspired me to discover my purpose had it not been for my stroke, I would never have been doing what I do now.” And now, having cheated death three times in as many years since his first haemorrhagic stroke in 2012, aged only 37 - and surgery which left him having to learn to walk again Bill is helping to inspire countless other people and families around the world who themselves have experienced stroke and are dealing with its impact. The Recovery After Stroke podcast has over 5,000 downloads every month, from survivors and family members in countries across the globe, all looking for somewhere to access much-needed information and support on stroke recovery and how lives can be rebuilt in its aftermath.

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“It's mainly about showing people who are going through the very acute phase of stroke, that there's a middle and an end to the journey,” says Melbourne-based Bill. “Even though you might have deficits, or where you might be struggling or your life has changed, there is still some way that life becomes routine and normal again, down the track. “While the podcast started off for quite a selfish reason, in that I couldn’t find the support or resources I needed for myself and my family, I never imagined it could have led to coaching and supporting people in the way it now does.” Back in 2012, being a podcaster based on his own traumatic experience and recovery from stroke couldn’t have been further from Bill’s mind. As an entrepreneur with his own property maintenance company, Bill, a father of two then-teenage children, enjoyed a busy and action-packed life. So when he experienced numbness in his left big toe one Sunday morning, he resolved to get on with his day.

“I noticed the numbness, but it just went out of my head,” he recalls. “I had this routine on a Sunday morning, I would go to the gym and run on the treadmill for 5k. When I went there, I felt unstable on my feet, because by then the numbness had spread from my toe to my entire foot. “But I still didn't think anything of it, it was just a weird thing. I had a regular appointment with my chiropractor, because I was always doing silly things and lifting things the wrong way at work, so I spoke with him. “He said he couldn’t find anything from my spine or back that might be causing this numbness, but told me to keep an eye on it. I took an anti-inflammatory and went back to business as usual.” However, over the following days, Bill’s wife remarked on his new and ‘strange’ walking style, and by the Friday the numbness covered the entire left side of his body. While stroke and its symptoms have a higher profile now than back in 2012, Bill remained unaware such a thing could be happening to him. “I just got on with it, I went to work. I tried to get on a ladder but my left leg wouldn’t lift and stay on the rung. I thought the ladder must just be wet and slippy, so I picked up my leg and placed it on the rungs of the ladder. I proceeded to climb up,” he says. “I probably knew it wasn’t quite right, but when I went to the chiropractor for another appointment, he said I should go straight to the hospital. “I didn’t want to as I wanted to get back to work, and didn’t see the need, but my wife persuaded

STROKE

me to go so they could confirm nothing was wrong with me.” Following emergency scans, a shadow was discovered on Bill’s brain, which required a tennight stay in hospital. On discharge, he was told to have complete rest for six weeks ahead of a follow-up appointment. However, at the six-week mark, Bill returned to work - and, unbeknown to him, the ordeal was about to get worse. “Suddenly, the room started to spin,” he recalls. “My wife came and took me to hospital, she dropped me off at the emergency entrance for me to go to triage, then she parked the car and met me. By the time she came back, I didn’t know my name, or what I was doing at the hospital. I blacked out. “When I woke, there was a lady at the end of the bed who said ‘Point to your chin’. I asked ‘Who is chin?’ She asked if I knew who she was, but I didn’t - I didn’t even recognise my wife.” Bill discovered the bleed on his brain had increased from around 1.5cm to more than double that, causing an array of problems for him in living his life. “I had memory problems. I couldn't write an email. I couldn't read,” he says. “I couldn't remember who came to visit me. I couldn't work, I couldn't drive. And I couldn't finish and start sentences sometimes. “But then, in November 2014, I had another episode where I was given permission to drive and go back to work and I felt a burning sensation on my left side while I was driving, it felt like sunburn. “I drove myself to the hospital and this time, my surgeon came to visit me and said, ’It has bled for the third time, we've got to take it out’. So a few weeks later I had surgery to remove the faulty blood vessel, which they then discovered was an arteriovenous malformation. “It was the first time they confirmed that that's what I was dealing with.” Intensive neuro-rehabilitation followed where Bill had to learn to walk again, having lost the use of his left leg and arm, with Bill committing to continue his recovery ever since. While he still experiences symptoms including fatigue and some cognitive challenges, happily he has regained the use of his limbs. However, while Bill’s determination saw him exceeding expectations and progressing in his recovery much sooner than expected, one area he immediately realised was lacking was the support on offer beyond the clinical environment. “My family were really good, really supportive, but they had never dealt with stroke,” he says. “We never knew anyone who had experienced stroke, and not at 37 years old. They were there for me in every capacity but weren’t capable of

understanding and supporting a stroke survivor, because they’d never experienced it, and there was no support for them. “At the beginning, it was about trying to understand what a stroke is and how it impacts your life. I teamed up with the National Stroke Foundation in Australia to learn a little bit more about stroke, and the support they could give. “I discovered their funding is all about stroke awareness and prevention - but when it comes to life after stroke, what now? That was really lacking. “Survivors are left with finding their own solutions to problems that are really difficult. I got a little bit of funding for some outpatient therapy and rehabilitation, but there was no suggestion about psychological counselling, about how to deal with all my emotional trauma and troubles.” Inspired by the dearth of information or support for stroke survivors, Bill made it his mission to discover what was out there. “I read books, I listened to interviews, I went to YouTube, but I found there wasn’t a proliferation of places I could go to, to hear the kinds of stories that were going to ease my mind,” he says. “There were no stories of people overcoming and achieving great things after stroke, no-one talking about what it’s like to be in a spaced out mode for the majority of the day and have these neurological symptoms that you can’t explain. What information there was, was all over the place, there was nothing in one single location. “There was a big hole, a big gap. And that's why the podcast came to be.” Through the creation of Recovery After Stroke at a time when podcasts were just beginning to become a widely-used phenomenon - Bill was able to share the stories of survivors around the world, who discuss their situation for the benefit of people with their own reality of stroke recovery, Bill included. “At the beginning, it was about me and getting those stories about recovery through my mind and in my ears, so that I could get encouraged, but it quickly grew - we now have a community

of 5,000 people,” he says. “At first, I chose podcasting because reaching a large audience was really hard to do. Somebody like me would have had to pitch to a news station on TV or radio, it just wasn’t doable, so podcasts have been a great solution. “We get any stroke survivors who want to come on to talk about their experience and how it has changed them, what they've discovered about themselves what they've learned. “It’s about trying to find a way to get what’s in people’s heads out, so other people can benefit, and I think through chatting and communicating, that’s a really good way of doing that. “It’s a passion project for me. Each onversation is really necessary, people will listen and reach out to me. I want it to be a place where people go to get stories of recovery, and tips on how to overcome stroke, so it’s very positive and shows what they can achieve.” And in addition to Recovery After Stroke, Bill is now writing a book - ‘Stroke was the best thing that happened to me’ - based on his experience of how stroke changed his life for the better. He hopes to release it this year, to continue to redefine the limits many believe they face. “We will have chapters covering a range of topics, with conclusions to every chapter, so you can work through it and learn from the experiences of others. That’s a very exciting project and I’d love to do some speaking gigs and travel to help people understand, and probably freak them out by saying it’s the best thing that happened to me,” says Bill. “And with the podcast I’d love to do another 1,000 interviews and be the biggest database of stroke survivor stories in the world. “I feel like, through that lens, I can perhaps reach people who are going through the acute phase of stroke, regardless of their disabilities, and if they're able to find or discover where they're missing in their recovery, they can get to the next level of recovery. “And maybe at some point, they too will reflect back and go, ‘Well, stroke was the best thing that happened to me as well’.”

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I N P AT I E N T R E H A B

A specialist neurological care centre is adopting a new model of working for their therapy and care teams to work more closely than ever before, as a means of maximising client outcomes and broadening the skills and knowledge of staff.

Care and therapy collaboration maximises client outcomes Sue Ryder Neurological Care Centre Lancashire has launched its Collaborate project, to give both its therapists and carers the opportunity to work together in the care of clients, giving valuable insight into each client’s wider care. And as well as delivering care in the most collaborative way possible, optimising client outcomes at the specialist site, the therapy and care teams are both able to learn about the other’s roles in the client journey - overcoming the ‘them and us’ perception that can exist between teams, and offering valuable new levels of involvement to carers and healthcare assistants in particular. Collaborate has been welcomed by staff and clients alike, with clients having input into the project since its pilot stage in September last year, to ensure they felt it was working for them; feedback has included therapists using overly technical language that clients could not easily understand. Now established as a new way of working in the Preston care centre - which opened in 2020, during the height of the first wave of the pandemic - its positive impact continues to be felt. “We looked at the drivers for change, as it Neuro-rehabilitation there is no standardised pathway. We did a piece of work to look at best practice, underpinned by evidence, and from that we knew we wanted to achieve a more collaborative approach,” says Hannah Halliwell,

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head of therapy at Sue Ryder Neurological Care Centre Lancashire. “We strongly believe that we need to make every contact count, and the evidence shows that by working in an inter-disciplinary way, you can achieve better clinical outcomes, which delivers benefits for both clients and the workforce. “Initially, the driver was around patient outcomes, but this is also enabling us to create an empowered, up-skilled, more inclusive team, which we believe will help us

with staff retention and the fact they want to come to work. “Our aims are based around the core values of Sue Ryder, which is to be supported, connected and impactful, and we felt that this project was fulfilling these.” Carers at the centre have been fulsome in their praise of the project, which is allowing them to become more involved in client therapy, broadening their role further. “Because therapists do a different job to carers, there used to be a bit of a 'them and us' feel at work, simply because we didn't really overlap or work together that much,” said carer Michelle Worswick. "Since the project was introduced we are definitely working more as a team. “For example, the therapists have shown us how to do gentle stretches with the clients so before we start daily routines like washing and dressing, we can do the stretches and then it becomes much easier to lift up someone's limb to wash them or get their jumper on. "I think this approach is definitely better for the clients.” Hannah agrees with this, and is pleased with the impact it is having on the team. “I know some of our healthcare assistants feel their voice is being heard now, which for us as a service is so important. For me personally, I feel very strongly about this.

I N P AT I E N T R E H A B

We spend a long time building relationships and working in collaboration, and we want our healthcare assistants to feel invested in this,” she says. “Now, they are playing a much greater role in the goal-based therapy than ever before, they become aware of these goals at a very early stage and then work in collaboration in how to achieve them. Healthcare assistants are a vital part of this journey and have an awful lot to offer in Neuro-rehabilitation. “We have had to break down some barriers, as historic ways of working do still exist - some of our AHPs have embraced it straight away, whereas others have taken longer. We are investing and supporting our workforce to make this cultural change. “It’s very much a work in progress and something we are going to continue to develop, but as well as the views of our staff, the patient voice is very much embedded in this project.” Indeed, the centre has been keen to consult its clients throughout, acting on feedback to refine its service delivery to ensure it is giving optimum care. Sue Struthers spent 14 weeks in the centre after sustaining a spinal injury, and played a role in helping to shape Collaborate.

“My carers used to come in and do everything, but with the Collaborate project, some of the rehab team would come in for the morning as well,” she said. “They would help with the showering and dressing, and do some warming up exercises to loosen my limbs, and get me to help with rolling over and lifting the legs. “I felt it worked well, as both sides of the organisation got to know how the other worked. “It was good from the carer’s side, as the rehab team were showing them exercises that would help them with their work in the long run, and explain what they were doing, and why they were doing it. “And equally, the carers could show the rehab team how they were carrying out washing and personal care, and show them easier ways to move patients. “Carers work very closely with patients, spending time with them all day every day, so they know what eases the pain, and what exacerbates the pain.” Sue also noticed some issues with the project, which she was able to point out to staff along the way. “One negative I noticed was I felt that the rehab team were using too many

technical terms, which meant patients and carers couldn’t always understand,” she said. “I suggested it would be better if they talked more in layman’s terms, which made it easier. “Patients aren’t always able to verbalise what they want, but the patient voice in the process was a very important part of the project. “I think the patient should always be taken into account, and I think it’s very important to not be considered as just another number. We should be treated holistically, and listened to carefully. “It’s important to still feel valued, no matter what your condition.” Hannah says: “The patient voice was really valuable, as we were able to hear things we hadn’t thought of. Through consulting like this, we were able to gain a fuller picture of our practice. “Sue Ryder has a strong service user participation strategy and I think this really fulfils that and shows our commitment to it - our clients were central to the development of Collaborate, from the start of the pilot stage, and we’re really pleased with what we have created so far.”

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THERAPIES

How Compassion Focused Therapy is

SUPPORTING STAFF AND PATIENTS ALIKE

The use of Compassion Focused Therapy (CFT) in supporting staff with stress management and the ability to better support patients with challenging behaviour through CFTbased psychological formulation is being rolled out across The Disabilities Trust, following a successful pilot project. 104

Although CFT is most commonly used as a psychological intervention, through The Disabilities Trust’s innovative application of the therapy in supporting staff with stress, feelings and emotions - with the ability to also recognise this in patients - relationships with service users have been strengthened and staff are more confident in their skills and abilities. As well as happier and more confident staff, examples of patients reducing challenging behaviours by over 50 per cent have also been achieved in some cases, the CFTinformed formulations helping staff to understand the impact of their brain injury and emotional presentations.

THERAPIES

The pilot at the Trust’s York House, led over several years by consultant clinical psychologist Dr Miles Rogish - who won a UKABIF Clinician of the Year Award in recognition of his work in this area - has seen such levels of success and engagement that it is now being introduced to care staff across its centres nationally. It was also trialled in a community setting in York to further gauge impact, which showed similar results with increased staff understanding of service user behaviours and emotional presentations, along with reduced anxiety in staff and staff becoming more likely to engage with service users and less likely to avoid behaviours that challenge. Dr Rogish used the relatively simple concept of three circles affect regulation system of CFT to create a formulation for staff to express themselves more effectively, to help them understand and manage their stress levels and reactions and protect against burnout, while better supporting patients and understanding their emotional experiences in the process. “Often within care settings, you can get situations where people want to downplay their own emotional responses, they say ‘I’m not scared, I can cope, I’m fine’, because staff don’t want to show they’re suffering in any way,” says Dr Rogish. “I tried to discourage that as much as possible, I want staff to communicate their feelings openly, honestly and effectively within an appropriate supervisory context. “For example, if you were helping someone with personal care and they slapped you when you were trying to help them, it's understandable to be angry and it’s OK to be scared when that situation occurs. “But what you have to then do is think about why it occurred, where was the service user in their emotional experience of the situation, and where were my (staff) emotions when that occurred. “Often you can find that if you can modulate your own emotions, so that you are as stabilising for the service user as possible, the probability of challenging behaviours occurring goes down. You then have a better interaction with the service user, you develop a better relationship and they progress better. “I’ve had staff come back to me and told me stories of working with service users, they told me that once they understood (through the formulation) that the patient was scared and not angry, they were able to empathise, be less anxious, and be a lot more compassionate and caring towards him. “And that made him less scared, which made

the relationship a million times better. And now they feel safe working with him, and he feels safe working with them.” Dr Rogish has been working in CFT - a concept devised by Professor Paul Gilbert – since 2000, with its effectiveness in supporting people with treatment-resistant depression being supported by increasing evidence over the years. But keen to test its application in a wider field, Dr Rogish saw the potential to support care staff through the use of CFT, with high levels of stress and burnout being huge problems within social care. Through teaching staff a formulation based around the three circles affect regulation model - which comprise systems of threat, drive and soothing. The three circles are typically represented by three different colours - the ability of staff and service users to express themselves became a lot easier. “You can really boil the three systems model down to quite concrete ideas that a lot of people can really hold on to,” says Dr Rogish, also an associate lecturer at the University of York, whose MA students assisted in the research. “When you’re working with someone, you can tune into a shared language which can be as simple as ‘What circle are you in right now? Where is your red circle right now?’ “And as well as staff, where appropriate, you can quickly turn it into something that service users, even with some profound cognitive impairment, can get the gist of in a way that helps them understand what might be driving their emotional dysregulation. “Using the three circle system has been very effective. For example, if someone is very fearbased reactive, they have an overactive threat system. Staff then need to be then very aware of their own threat system, because if you are approaching someone who is very fear reactive, and you are showing fear or anxiety yourself, you will increase their fear. “You can then activate your soothing system, so that when you are approaching someone who is very threatened, you approach them with a very compassionate, soothing and caring perspective, so that none of your interaction should trigger their fear. “Through this, staff then understand how they can compensate for the dysregulation in the service user by adapting their own presentation.” This approach has been central to achieving significant progress in patients, including those with profound difficulties. “I started using CFT to individually formulate the service users. With psychological

formulations, you typically share them with the service users, sometimes you do not, it would depend on the service user and their capacity to understand such things,” says Dr Rogish. “I used it with a particular service user with profound cognitive impairment and challenging behaviour. “He would not have had capacity to understand the formulation, or the need for a formulation, but it was really clear to me through my typical applied behavioural analysis-type interventions that most of his challenging behaviours were reactive and fear-based. “He was reacting from a fear based perspective, typically triggered by staff trying to support him. I formulated him using a CFT perspective, and what staff were able to get from the formulation was just that, that his aggressive behaviours were a fear-based reaction. “He was not an angry person - he was a scared person. And while that sounds really simple, how you approach an angry person and how you approach a scared person can be very different. “All it took was for some staff to just understand that ‘He's not angry at me, he’s scared of me’. And that really changed the whole situation. It allowed them to approach him with a lot more empathy and compassion for his feelings, and within a month, his challenging behaviours had reduced by well over 50 per cent.” The success of the project will now see staff of all levels across The Disabilities Trust receive basic training in CFT, with Dr Rogish creating online and face-to-face support for staff in its implementation. “At York House, we have integrated CFT into so many aspects of how we work here, it’s in our inductions, it’s in our psychology training, and it's in almost all of our formulations,” he says. “Staff in York House are very CFT-informed, so we are now targeting support workers outside of York House who may not have been exposed to CFT before to see if this training has as much of an impact with people who are naive to the model. “And I'm also going to be specifically targeting senior management with this training as well, because I'm interested to see the differences in perceptions of training between senior management and the people who are working with service users day-to-day, face to face. “I'm particularly interested in developing training that is clear, easy and effective for all staff, and through the research projects I hope to provide insight to senior leadership, so that we can understand whether our ideas are translating to everyone within the Disabilities Trust as well as they could.”

SPONSORED

ABI Strategy Update It was a pleasure to join Chris Bryant MP on visits to three very different facilities offering neurorehabilitation services across the country to gather information for the new Government wide Acquired Brain Injury (ABI) Strategy.

ABI Strategy secondment opportunity: Applications open The Department for Health and Social Care has a secondment vacancy for a Stakeholder Liaison Lead in the Long-Term Conditions Team, working specifically on the ABI Strategy. The Stakeholder Liaison Lead will support the development of policy proposals for inclusion in the Strategy and ensure that the views of patients, carers, families and

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We visited facilities in Newcastle, Sheffield and Birmingham to speak to staff, patients and families in order to hear what they think is needed to improve the lives of those living with acquired brain injuries. Chris Bryant MP said: "These visits have been hugely helpful as we look to gather information and first hand views from people working in ABI neurorehabilitation. If the ABI Strategy is to be fit for purpose we need to know what is currently working but perhaps more importantly what isn't working in order to ensure the needs of people with an ABI are properly addressed. "I want to say a huge thank you to everyone we met for sharing their experiences for us to consider as we take the Strategy forward."

professionals are fully taken into account in the policy development. The role will involve building and maintaining strong working relationships with key stakeholders, particularly voluntary sector organisations working with people with an ABI. This is a hybrid part time role for a six-month period. www.bit.ly/3Ocy08K for full details closes 26 June.

UKABIF Awards 2022 are open THE annual UKABIF awards are back for 2022 celebrating people’s work and creativity in the field of acquired brain injury. The four awards, sponsored by Elysium Neurological are: > The Mike Barnes Award for Innovation > The Stephen McAleese Award for Inspiration > The UKABIF Film Award > The UKABIF Poster Award The awards are one of the ways we can recognise and celebrate the wonderful work of unsung heroes across the country. In the past we have received some incredible nominations and we look forward to hearing about the inspiring and innovative efforts being carried out. The deadline for entering the awards is 30 September and you can email your entry to info@ukabif.org.uk The winners will be presented with their awards at the UKABIF Time for Change Summit in Manchester on Monday, 7 November.

The annual UKABIF Time for Change Summit is back for 2022 bringing a full programme of speakers, organisations and key partners to discuss developments and improvements in the delivery of care for people with an acquired brain injury. This year’s Summit is on Monday, 7 November in Manchester and includes sessions from the ABI Strategy team, Chris Bryant, the Ministry of Justice, NHSE Rehabilitation Directorate and much more. To register to attend at an early bird rate, visit: (currently £95 for UKABIF members) www.ukabif.org.uk/events

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DEMENTIA

Dementia and the joy of being outdoors Fo r m e r c a r e r B e t h Britton writes about how getting outside wa s a g r e a t t o n i c f o r her and her dad during h i s ye a r s i n c a r e homes with dementia So many of my happiest memories of my dad’s latter years with dementia revolve around being outdoors with him. We were lucky that the care home he spent the majority of his last nine years in was in a rural location, with a big garden and footpaths beyond the home for taking dad out in his wheelchair. My dad was very much an outside person. He’d spent his life as a farmer and his main hobby was gardening, not just at home but through maintaining huge allotments to grow vegetables throughout my young childhood. For dad, being indoors wasn’t his preferred environment, but the staff in his care home often found it difficult to find time to get my dad (and other residents who wanted to be outside) into the garden. Countless times we’d go to visit and would need to find dad a wheelchair, help him to get an extra jumper on, and get some help to move dad into his wheelchair. Other residents without visiting families often looked on, and I can only imagine that they were perhaps wishing to be outside too. Whilst summertime was when we went outside with dad the most (we’d sit in the garden, dad with his Panama hat on, having tea and relaxing) we would go outside in cooler weather too. So long as dad was well it just meant wearing more layers, and us pushing his wheelchair around to keep us all on the move and warmer. The care home would sometime arrange outings – I recall visits to a model village and a working farm amongst them – but whilst my dad enjoyed these I’m not sure they were preferred to quiet time in the garden. Outings, especially in these post-COVID-

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lockdown times, can sometimes be a sensory overload of crowds, movement and noise. Many people living in care homes have become conditioned to being within the care home building or grounds due to lockdown, and whilst some residents may welcome the chance to go on trips to attractions or shops there are definitely some people who will feel anxious and uncomfortable too. Even in my dad’s care home, long before any of us had heard of COVID (my dad died in April 2012), there were residents who would never go into the garden, even when the staff had set up lunch or tea outside. For these individuals their dementia had made them very fearful of larger spaces, and they only felt comfortable in the confines of their room or the lounge/dining area. My advice to families, whether your loved one likes to be outside or not, would be to think about how to enjoy nature together – all year round – in ways your loved one feels most comfortable with. Plants can be enjoyed inside or outside, gardening can be done inside or outside (think table-top planting and potting), different textures (leaves/stones/sand/soil etc) and smells (think aromatherapy) can be explored inside or outside, and watching birds or wildlife is often as easily done from a window as it is outside. Try not to see boundaries, but instead see possibilities and be as creative as possible. Why? Because nature is fantastic for helping us to ‘Take notice’, which is one of the 5 Ways to Wellbeing , and overall embracing nature in all its forms is heavily

linked to improved mental health. On an anecdotal personal level, I know from the time I spent in nature with my dad that there is something very calming about that environment. I’d often sit in the garden with my dad holding hands as he napped in his panama hat, close my eyes myself, and almost forget dad had dementia for a while. We were just enjoying the moment, with the warmth of the sun on our faces and only birdsong and the rustle of the trees to listen to. That – more than any other experience – was priceless for me, and now my dad’s gone they are very precious memories. As I said in my blog, ‘The sun is out’ Beth Britton is an award-winning content creator, consultant, trainer, mentor, campaigner and speaker who is an expert in ageing, health and social care www.bethbritton.com.

VICKI GILMAN

Lessons in Learning for a Curious Case Manager Before the conference

Knowing this edition would contain a report of the BABICM annual conference on June 15th and 16th I decided to write half of this article before the event and half afterward, I will leave it with the reader to decide whether that’s been a good idea… I am excited about the programme and the learning opportunities it provides. Many months ago the conference planning group put on their thinking caps aiming for an inspiring and fresh programme and aspiring to line up fantastic speakers who could share valuable their expertise, their learning and their wisdom. We have 2 themes which intertwine to an extent but which also allow for a deep dive into one topic – sporting concussion / mTBI and the opportunity to explore broader themes of safeguarding, regulation and protection with all the messy complexity that often entails. I have been involved in organising many events. I can’t think of any that have bombed, in fact the majority have gathered extremely positive feedback. Nevertheless there is always anxiety as to whether the content will land well with the audience and a secondary fear that speakers may drop out (I did once have responsibility for a conference where six out of seven speakers had to cancel in the weeks leading up to the event, we

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managed to replace 5 of the 6 and still run a well-received day!). My third fear is something practical going wrong - IT failure, someone falling off the stage, discovering the timings are not correct….. But that is about me and of course the conference is actually about giving a platform to wise, learned, experienced voices, who give their time and share their expertise generously. It is about an enthusiastic audience keen to learn from our speakers, exhibitors and each other. It is about a varied range of exhibitors updating delegates on their services and products. Learning, learning, learning – the conference is a platform and facilitator for curious and open minds. So case packed, car fuelled up, introductory notes written, feeling curious and open I am ready to set off. By Thursday evening I shall be home again and it will be done, so let’s see what I think when I come back….

After the conference It’s Friday and I am back in the office after a packed and thoroughly enjoyable conference. Of course I need not have worried – which I am sure you have already surmised. No one fell off the stage, no speakers forgot to turn up and the after dinner comedian was very funny. There are many highlights. I am particularly proud that we have supported research students from Plymouth University to attend and present their case-management related work. We heard several times that the BABICM research group can develop research questions, members have lots of data and students – like those we heard from – are willing and able to carry out analysis and write up their work with the support of their supervisors. That’s a win-win surely? There is a very real sense of momentum developing across case management to contribute to the evidence base and BABICM is committed to building on this. So curious and open minded what did I learn? What have I brought back home with me? Change - I reflect on the idea that change is never far away. I anticipate case managers should expect to see litigated sporting mTBI / concussive injuries in the coming years. Alongside this changes in diagnosis and imaging mean there will be better opportunities to demonstrate the existence of neural damage and its consequences. Also importantly that it may be more helpful to refer to Persistent Post Concussive Symptoms

(PPCS) - another acronym to get familiar with – but language matters. ‘Mild’ is not a particularly helpful term for lasting cognitive changes that are resistant to change. Impact - I felt strongly the impact of colleagues who are making a difference beyond the clients they directly work with. On day 2 there was a moment when Dr Mark Holloway received applause during his presentation in recognition for his work and determination to highlight serious failings in his local area, which contributed to the death of a brain-injured individual. The story he told demonstrated how coming forward and taking action from a place of on-theground knowledge alongside highlighting published evidence can bring about change – in this case a local authority implementing organisation-wide brain injury training. I can’t have been the only one thinking “I should do that too”. Core team members from The Open Justice Court of Protection Project described how the project is challenging the Court to deliver on its promise of transparency, and providing and supporting impactful learning across a range of professionals in this extremely important area. Lived experience - Three inspiring presentations made me stop and ponder anew on lived experiences as Dawn Astle, Laura Collett and Lorraine Currie all offered a different window into life, living and achieving before and after injury. For me these presentations sat interestingly alongside storytelling from professional deputies from EMG Solicitors, who must see when to act in best interests but also when to give way to capacitous yet sometimes unwise decision making. Understanding the fine-grain details and priorities of each individual life are crucially important to the work we all do with injury survivors and their families. I could go on, there was so much and each of us attending will have no doubt brought back our own particular learning points and highlights. I guess the most crucial thing is always to keep an open mind, to be prepared to be challenged and to look for opportunities to add to our knowledge and experience and I think I can honestly say (whilst admitting a certain level of bias but also having received all the feedback) that the BABICM 2022 conference delivered once again. So now a bit of annual leave for me and then back to join the BABICM 2023 Conference Planning Group. See you in Coventry next June!

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The home provides care for adults living with physical disabilities and learning difficulties.

Rated GOOD with the CQC The home benefits from a sensory room to allow for therapies and specialised activities.

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The home provides care for adults living with physical disabilities and learning difficulties in Frinton-On-Sea, Essex.

The home provides care for adults living with physical disabilities and learning difficulties in Dereham, Norfolk.

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Representing & advancing the brain injury & complex case management profession in the UK and beyond.

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BABICM offers: Membership & member support Professional development & career pathways through our Standards & Competency Framework An industry-recognised Code of Conduct Industry representation at the highest level Regular industry collaboration Training & events Research & resources Guidance for legal advisors & deputies as well as the families & friends of individuals with an ABI Powerful networks - both in person & online via our BABICM Forum

NR TIMES Issue 22

Articles inside

COMPASSION FOCUSED THERAPY

COLLABORATIVE WORKING

LIFE AFTER STROKE

DEFYING THE ODDS

HUNTINGTON'S DISEASE

MENTAL HEALTH

MENTAL CAPACITY ACT

HR AND CARE

DEFINING OT

TALKING TO CHILDREN

TRAUMA REVEALED

TRAUMA FOCUS

NROL EXPANSION

PARENTAL SUPPORT

EXCEEDING EXPECTATIONS

SECURING BETTER SLEEP

WIDENING ACCESS