Neuro Rehab Times issue 24

NR TIMES NEURO REHAB TIMES

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RESEARCH CHANGING THE FUTURE The Parkinson’s Brain Bank helping to revolutionise future diagnosis

S I LV E R TRAUMA What is the outlook for the soaring numbers of seriously injured older people?

MUMS MAKING A DIFFERENCE How After Matters is changing the reality for young brain injury survivors

I worry how the political chaos will affect the ABI Strategy

Chris Bryant MP s h are s hi s fears ove r the l i fech an gin g project h e is l ead i ng

WELCOME

Editor's note We l c o m e t o o u r l a t e s t i s s u e o f N R T i m e s .

For our interactive digital edition visit

nrtimes.co.uk

Firstly, I’d just like to thank you all for the fantastic support we have had with the launch of our first digital issue.

It was a huge undertaking for us all at NR Times, and we worked so hard to create something that contained everything our readers have come to know and love about our printed format, while bringing a fresh new digital identity - and the feedback has been simply brilliant.

So here, we give you NR Times issue 24, and our second digital, paperless version.

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 Kirsty Rigg, Global editor Chloe Hayward, Sales Robert Dale, Digital marketing Sophie Dinsdale, Design Paul Newton, Operations and finance manager Sorina Mihaila, Contributor Andrew Nealen, Contributor

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)

As ever, we bring you an array of news, features and insight into the world of neurorehab, telling the stories of individuals and businesses whose contribution is helping to change the reality and future for so many others.

We are honoured to have Chris Bryant MP as our cover star. His work in getting brain injury on the agenda, and ongoing fight for survivors to be given more support and for awareness to be increased, is truly life-changing for so many people who feel they otherwise do not have a voice.

In this issue, he discusses his fears around the political turbulence and its impact on the ABI Strategy he campaigned so hard to make reality - but as someone who is known only too well for his determination and commitment, Bryant will surely leave no stone unturned in ensuring it does indeed become reality in the near future.

Support for brain injury survivors is something After Matters is also committed to delivering. For Maxine and Louise, two mums whose sons live with the ongoing consequences of traumatic brain injury, they felt the devastating impact of the lack of support first-hand - and are determined to change that for the future. We look at their great work and dedication in this issue.

We also meet Professor Steve Gentleman and Dr George Gveric from the Parkinson’s UK Brain Bank, whose commitment to changing the future through research will benefit people globally into the future - through better understanding of the disease, earlier diagnosis can come, leading to the potential for treatment and improved outlook for those with Parkinson’s in years to come.

As ever, we’d love to hear your thoughts, suggestions and stories - please do get in touch. And thanks, as ever, for your continuing support.

Deborah Johnson deborah@aspectpublishing.co.uk

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

company/nrtimes @editorNRTimes 3

CONTENTS

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C H R I S B R YA N T M P ‘I worry about the impact the political chaos will have on the ABI Strategy’ 10 NEWS The latest developments from the world of neuro-rehab

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Contents

1 8 S I LV E R T R A U M A Rehabilitation for the elderly after serious injury

38 'BELONGING' IN FOCUS Addressing exclusion and isolation

46 REHAB PIONEERS 'Survivors have a life - we help them to live it'

30 ROBOTIC RISE Profiling the latest from Fourier's rehab tech line

40 GAME CHANGER A new approach to post-stroke physiotherapy and remote rehab

5 0 V O C AT I O N A L R E H A B At the heart of recovery

CAREER ADVICE Managing maternity leave as a rehab professional

4 2 P AT H WAY P R O F I L E Richardson restructures to offer seamless care provision

34 NR JOURNEYS MAPPED Two life stories in brain injury care and the lessons they teach us

4 4 S C I F U N D I N G CHALLENGES NR Times meets Stoke Mandeville Spinal Research

52 LEADING LIGHTS Meet the winners of the CMSUK Awards 2022 5 4 F AT I G U E MANAGEMENT Community rehab provider creates vital resource to address common issue

CONTENTS

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80 90

58 NEW REHAB OPTIONS How provision for amputees is being increased by rehab group

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BRAIN BANK And its role in changing the future of Parkinson's care 64 MISSION FOR CHANGE 'We've seen the lack of support at first-hand - that's why After Matters exists' 68 THE POWER OF COMMUNITY RE-ENGAGEMENT With Exemplar Health Care

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F N D U P D AT E New research and the optimal rehabilitation pathway 76 LIFE CHANGING MOMENTS NR Times reports on the building momentum behind Peartree House

80 LEARNED NON-USE Overcoming this rising threat to positive rehab outcomes

86 BEING HEARD How co-production is enabling a more inclusive goal setting and achievement process

82 A SOUND APPROACH Harnessing music to enhance physical training with innovative software

88 TRAUMA THERAPY Tapping into the power of the arts to get life progress back on track

84 BREAKTHROUGH Paving the way for brighter futures for case management clients

9 0 B E H AV I O U A L R I S K I N NEUROLOGICAL SERVICES A much-needed update on risk assessment in rehab

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C O V E R S T O RY

‘I worry about the impact the political chaos will have on the ABI Strategy’

A f t e r p l a y i n g a k e y r o l e i n p u s h i n g f o r t h e c r e a t i o n o f a n A B I S t r a t e g y, Chris Br yant MP was appointed to co-lead it - but the recent political t u r b u l e n c e h a s r a i s e d f e a r s o f d e l a y s t o t h e m u c h - n e e d e d s t r a t e g y.

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C O V E R S T O RY

Here, the prominent MP and champion of change discusses the development of the ABI Strategy to date, why it is so badly needed, and his own personal motivation for his unrelenting commitment to supporting brain injury survivors When you think of brain injury campaigning and those committed to making change, Chris Bryant MP will almost certainly be one of the first names that come to mind.

A champion of changing the reality for so many people living with brain injury across the UK, his efforts were crucial in the Government - specifically the Boris Johnson administration, and then-health secretary Sajid Javid - giving the go-ahead for an ABI Strategy.

The Strategy is seen as potentially a huge step forward in brain injury support and provision in the community, which will help to tackle the ‘postcode lottery’ of access to resources that hamper the recovery potential of so many

people every day - resources that have been squeezed even further since the onset of the COVID-19 pandemic.

However, while the ABI Strategy was given the green light by Javid in late 2021, the political and economic landscape has changed massively in the short time since, and political turmoil continues to ensue.

After the disastrous Liz Truss Premiership and the ongoing implications of the infamous ‘Mini Budget’, the country faces huge economic challenges, as well as an array of spending cuts set to be introduced in the near future with the aim of helping to balance the books and regain some stability.

While current Prime Minister Rishi Sunak appears to have brought some degree of calm after the storm, the changes continue, and particularly with regard to the impact on the ABI Strategy.

Two health secretaries later - the brief appointment of Therese Coffey, replaced by current health secretary Steve Barclay - and a promotion to the Cabinet for Bryant’s co-chair of the Strategy, now education secretary Gillian Keegan, who will no longer be working on the ABI Strategy, continues to cast doubt on its progress.

Clearly the situation is very different now to when Johnson and his Government - who Bryant famously and continuously held to account - were in power. Is this huge change a concern for the future of the ABI Strategy?

“Yes, I am very worried about that,” Bryant, chair of the All Party Parliamentary Group on ABI, tells NR Times.

“I desperately want us to move forward on this.

But I do worry that the chaos in government, let alone what they're doing with the economy, is going to provide problems for us.”

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C O V E R S T O RY

The ABI Strategy - the journey so far The gaps in provision for people living with brain injury is well known and well documented, and survivors across the country can face missing out on vital resources because of where they live.

Keen to address this, yet with efforts to lobby the Government into action unsuccessful, Bryant introduced a Private Members’ Bill to seek to force the creation of a strategy by law, which would support a more joined-up approach across Government departments and across the country to improve survivors’ lives.

While charities and campaigners gathered behind the ABI Bill, visiting Downing Street to deliver a petition to show the level of support, the Bill was about to go to its Second Reading in the Commons - when suddenly the Government conceded and asked Bryant to co-chair the development of the ABI Strategy.

How did such a swift turnaround come about?

“I must have intimidated Sajid Javid,” smiles Bryant.

“We had a meeting and I said ‘If I take it to the House, I’ll win the vote. So what are you going to do?’

“He told me he was going to prove we didn’t need the legislation because they were going to introduce a strategy anyway. Three weeks

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later, they came back and asked me to co-chair it with the Government minister.”

Since then, a Call for Evidence has heard the personal and professional accounts of people across the spectrum of brain injury, and Bryant himself has toured the country visiting key neuro-rehabilitation sites to see first-hand the work being done and to identify what more is needed.

The last word from the Government on the ABI Strategy was some months ago, when indications were that it would be unveiled in ‘early 2023’ - although the impact of the political turmoil remains to be seen.

“When you leave hospital, it might be the case that you're done, the local area might have absolutely nothing, whereas some other areas will be really well provided.

So it's a complete l o t t e r y.

Brain injur y - the current situation The ‘postcode lottery’ of care and access to services is one of the biggest challenges facing survivors, with NHS provision differing greatly even within the same regions of the UK. “It’s very, very patchy,” agrees Bryant, MP for the Rhondda.

“Sometimes, you'll get really good help in the major trauma centre, which might save your life. And you might have really good acute services for a few weeks.

“But then when you need neuro-rehabilitation, the therapists aren't available, or they’re not available often enough to make a real difference.

“When you leave hospital, it might be the case that you're done, the local area might have absolutely nothing, whereas some other areas will be really well provided.

So it's a complete lottery.

“The other thing that matters is whether or not you get compensation from insurance.

In some cases, there's a no fault accident, so there’s no compensation, and then your access to resources differs greatly.”

Attitudes to brain injury are also badly in need of change, says Bryant, even though statistics that one in three people will sustain

C O V E R S T O RY

brain injury at some point in their lives show the huge and growing scale of how widely it affects.

“I think awareness is very, very poor,” says Bryant.

“If you're standing behind somebody in a queue at the supermarket, for example, you might think that the person in front of you is drunk, because they're slurring their speech.

“But it may be because they've had a brain injury that you have no knowledge of, because it's not like other injuries, where there's maybe an injury or evidence on the outside.

“Sometimes, teachers are great with a kid who's had a brain injury for a couple of months after the brain injury. But a year later, when the child suffers from later symptoms from the brain injury, it gets completely forgotten. And so the child gets treated as if they're naughty in class.

“It’s very important we change this, and this comes through awareness.”

The need for a strategy Through the creation of the ABI Strategy, survivors would see a more joined-up approach to care and accessing the resources they need something that typically proves very challenging.

Bryant is clear on what steps need to be taken to establish provision and then make change.

“First of all, we've got to know the real lay of the land. You know how many, how many doctors we've got, how many people are affected, what different categories they are, what support there is for children, for instance,” he says.

“Secondly, we've got to get a much better impression of where the research is taking us. Because there are major, groundbreaking changes in research coming through, and we just need to make sure that they're fed through.

“But the most important thing is making sure that there's a national strategy, which covers all the different departments.

So Ministry of Defence, education, housing, Treasury, Home Office, and literally every department of government. That's why the programme board is so important, because you've got everybody there.”

But while the picture in brain injury support can be quite negative, Bryant points to the advances made through campaigning to date, but what is left to do - and the impact the ABI Strategy could make.

“We've got screening of people when they arrive in prison. They’re screening for people when they have been in a domestic violence situation as well. Some people don’t understand that this directly impacts the prison population, a large number of them have had brain injuries,” he says.

“So we’ve done some things already.

But what I’d like to see is more education for those assessing people for benefits, because I don't think they understand brain injury, how the symptoms can ebb and flow.

“But the single biggest thing is the workforce strategy for the future. Because if you haven’t got enough physiotherapists, speech and language therapists, occupational therapists and psychiatrists, the support will always be patchy. And that's a shame. We save more lives, but I want to give people back a quality of life as well.”

The inspiration behind the campaigning Brain injury is something that touches so many lives, with one in three people sustaining ABI it directly in their lives - and like so many, Bryant too is motivated by the personal experiences of people he knows.

“There are two things - I have a lot of constituents who played rugby, who have found themselves in middle age experiencing earlyonset dementia, anxiety, depression, suicidal thoughts, brain fog, all of that. I think that’s almost certainly to do with having played lots of rugby and having lots of concussions,” he says.

“And secondly, I had an elderly cousin who had a fall down a flight of stairs and a stroke.

The two of them left her trapped inside her own head. She was very unhappy for the last few years of her life because of that.

“Such a large number of people in Britain have had brain injuries and live with those consequences. That’s why I want to make change.”

" We ' v e g o t t o g e t a m u c h b e t t e r i m p r e s s i o n o f w h e r e t h e r e s e a r c h i s t a k i n g u s . B e c a u s e t h e r e a r e m a j o r, g r o u n d b r e a k i n g c h a n g e s i n r e s e a r c h c o m i n g t h r o u g h , a n d we j u s t n e e d to m a ke s u r e t h a t t h e y ' r e f e d t h r o u g h ."

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N R news

Supporting children with special needs through play and sensory stimulation Play is incredibly valuable for all children, but having special needs could create unexpected barriers. We caught up with Alex Ford, founder of PODS – the world’s first interchangeable sensory play spaces – to find out how the pop-up tents could redefine play through technology and innovation.

The needs of little ones vary a lot. When it comes to play, however, pediatricians have crucially highlighted the importance of free play time.

According to a clinical report by the American Academy of Pediatrics, play is essential to development because it contributes to the cognitive, physical, social, and emotional wellbeing of children.

Not only does it help children gain healthy emotional development but it also promotes healthy brain development, strengthening many neuronal connections that would otherwise disappear or weaken if not used.

Additionally, experts have suggested that play areas with special, calming places

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can help children with autism and sensory integration disorders find comfort, relax, and re-focus when they need breaks.

“The longer a child can play for the better,” says Alex Ford, founder and creative director of PODS, the pop-up, themed sensory tents for children.

He started to understand the importance of play early in his life when he was partnered with a younger autistic boy at school.

“I’ve always seen how restless children can get especially when they don’t have their own space to relax and calm themselves in,”

Ford remembers.

“I used to spend quite a bit of time with my autistic friend and I noticed when he had a meltdown, he would go underneath the table to relax and shut himself off. This got me thinking about a ‘calming safe space’ where a child can be themselves, have their own place and feel like being in another world.

“Fast forward a few years I then became a designer and specialised in structured design and my creative curiosity and experience with children with sensory needs led me to design PODS.”

N R news

The themed inflatable play spaces create a 360° immersive environment great for children living with special sensory needs and physical disabilities. Each PODS product can be inflated and deflated within 40 seconds and has a range of interchangeable themes with corresponding audiobooks – think dinosaurs, igloos, astronauts and submarines.

“Imaginative play is huge and it is the reason behind the product,” says Ford. “With our interchangeability, children can be getting off into outer space one minute, and then they can change the theme, the app, the sound effects and walk with dinosaurs the next minute.

“We, as adults, don’t see how children see things. But for them, PODS is almost real life and that’s what makes it so magical. If we can prolong that magical experience, then I think we’re doing a good thing.”

The advanced technology behind the product is what makes it something that complements other toys, enhances play, and focuses the mind for learning.

This is one of the reasons why PODS are also used around the world in specialist schools, hospitals, creches, respite centres and hotels, as well as in the home. Their portability makes them ideal for such places, says the founder.

“You can just pop it up from a backpack or walk it from room to room in seconds. It’s really easy. You can put it in the boot of a car or on a

“We, as adults, don’t see how children see things.

But for them, PODS is almost real life and that’s what makes it so magical."

passenger seat and that makes it a key piece of equipment to most child caregivers, but particularly to those with learning and physical disabilities.

“We have quite a few parents with physically disabled children. So, when they’re not in their wheelchair, they use our PODS whilst laying on their back, gazing up and seeing all the colours changing.

“They’re incredibly fun and they are hours and hours of playtime. The immersive experience that you get is quite literally unique and there’s nothing else like it. We say it’s out of this world because we provide themes that children would possibly never get the chance to experience.”

After successful demonstrations with the original PODS, the company has developed the Therapy PODS as safe, relaxation spaces for the elderly or those suffering from dementia.

“Because colour therapy is quite a big thing, we came up with the idea of PODS for adults,” says Ford. “Being surrounded by a small environment, immersed in a changing of colours can really affect your state of mind, even as an adult.

“Now, we’re working on something whereby we can create the landscape of a train station or forest that could evoke the senses through providing an immersive experience and help people calm and relax.”

To find out more about PODS, visit podsplay.com.

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N R news

Extract: Jumping from a helicopter and landing on a telegraph pole with a pineapple strapped to the top.

Experiences of a Lost Tribe The Lost Tribe - Stories from Survivors of Cauda Equina Syndrome contains a number of accounts of those with lived experience of the debilitating condition, the symptoms and impact of which remain misunderstood, even by many working within healthcare.

The book, published by Cauda Equina Champions Charity, brings together the personal stories of people whose lives have been changed dramatically by Cauda Equina Syndrome and who now live with permanent disabilities and lifelong consequences as a result.

Among them are former Blue singer Duncan James, a world champion powerlifter, a RADA-trained dancer, and emergency services staff, who discuss their difficulties in accessing the treatment they needed and the impact of the condition - but also how it is possible to rediscover a great quality, and enjoyment, of life despite Cauda Equina.

The Lost Tribe also contains the insight of two leading medical professionals who are committed to raising awareness of Cauda Equina Syndrome - spinal cord injury consultant Munawar Mecci and consultant spinal surgeon Mike Hutton.

All proceeds generated from The Lost Tribe will go to the Cauda Equina Champions Charity, to help finance vital support and access to services for people living with Cauda Equina Syndrome, whose urgent need for medical intervention is often not recognised by healthcare professionals.

No specific care pathway is currently in place for such patients, although work is underway to implement a new strategy next year.

Claire Thornber, founder of the charity and herself a survivor, says: “It was actually Mr Mecci who used the phrase ‘The Lost Tribe’ in the very powerful piece he has written for us, and I think it is right to say that.

“We do feel like we’re a lost group, because there is no care pathway, and while the NHS is now addressing it, it has been a very slow process.

“The idea of the book was that by bringing the very personal stories together of people from all walks of life and professions and show the impact Cauda Equina has had on their lives.

“We want it to be of use to healthcare professionals and patients alike - we want to highlight the red flags that should be there when people experience lower back pain, and to give insight into what that might mean and what they should do.

“Even within healthcare, we find Cauda Equina still isn’t recognised as it should be, so hopefully this will give them insight into how they can better support their patients.”

To buy The Lost Tribe, visit here Xxxx

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I was thirty-nine when it happened.

I turned over in bed one night in September 2010 and suddenly this pain in my back gripped me, so vice-like I could hardly breathe.

It was as if I was instantly paralysed, whilst being electrocuted at the same time. I couldn’t move any further. I couldn’t get up. It was terrifying. I never cry, but now I burst into tears. My sobs woke my partner Dan, who was sleeping next to me. I had no idea what was happening to me, and he wasn’t sure what to do for the best. So, he called 111 and they told me to get to the G.P. in the morning.

I didn’t exactly need them to tell me that.

The pain was searing. And then I became aware of pins and needles in my buttocks. It felt as if I had enormous weights strapped to each one, as if all the muscle tone had disappeared.

It was a sensation I had never felt before. I knew something wasn’t right.

In fact, something was very wrong.

I had been having lower back pain and sharp sciatic pain radiating from my hips down my legs for some time, first one leg then the other. The first time I ever had a back problem was about fifteen years before in the mid ’90s when my boyfriend at the time assaulted me. He was getting increasingly violent to the point where I was quite used to the odd black eye. But on this occasion, he not only punched me in the eye, but grabbed the hairdryer I’d been using and struck me over the head with it too. That must have sent me to the floor because the next thing I knew I felt him boot me so hard in the lower back I went to jelly. I stayed down until he went out and I knew then I had to get out the flat and not be there when he came back, but when I went to stand up, I could barely walk. So, I crawled out of the flat, across the car park to my car on my hands and knees and managed to drive to my friend’s house for safety.

The following day I hobbled to A&E, and they advised bed rest until it got better, which it did after a week or so. From then on, I regularly had a grumbling back, but I thought it was nothing to worry about; it always resolved itself.

In 2003 I started my own cleaning business. Well, I was never very good at being told what to do so it was much better to be my own boss. I employed a few other girls, but did a lot of the cleaning myself, so I could be extra sure the clients got the best service and had nothing to complain about. Shoving a hoover around your own home isn’t great on your back but doing it day in day out around other people’s homes and offices and hauling equipment in and out of vans over the years, turned that grumbling back pain into sciatica. Being the boss meant nobody told me what to do, but it also meant I didn’t feel I could ever take the day off sick, so I told myself to suck it up and get on with it.

However, as time went on, the sciatica became so bad I couldn’t stand for long periods or even sleep at night. Queuing in a shop, for example, was impossible and I had to start relying on the girls to do most of the cleaning, while I just supervised; something I was never happy doing. I even started to get strange sensations in my genitals, so I did a bit of googling of my symptoms and that’s when Cauda Equina Syndrome popped up: Cauda Equina Syndrome Medical Emergency.

N R news

NIH recognises CTE caused by repetitive TBI The leading medical research agency in the United States has publicly acknowledged for the first time that chronic traumatic encephalopathy (CTE) is caused by repetitive traumatic brain injuries (TBI), in what is hailed as a “landmark moment” in the fight to end the brain disease.

The National Institute Neurological Disorders and Stroke (NINDS), part of the US National Institutes of Health (NIH), has agreed to update its official statement on cause after being petitioned by 41 of the world’s eminent experts on CTE and related areas of science.

The letter, spearheaded by the Concussion Legacy Foundation (CLF), urged NINDS to review the current evidence outlined in the 2022 article Applying the Bradford Hill Criteria for Causation to Repetitive Head Impacts and CTE. Now, Dr Nsini Umoh, program director for TBI, responded that the NINDS official statement on CTE causation has been updated to now say: “CTE is a delayed neurodegenerative disorder that was initially identified in postmortem brains and, research-to-date suggests, is caused in part by repeated traumatic brain injuries.”

“The National Institutes of Neurological Disorders and Stroke new statement on CTE causation is a landmark moment in the fight to end CTE,” said Dr Chris Nowinski, study lead author and CLF founding CEO. “We thank all the scientists who built the evidence and advocated for this change as well as the families of the brain donors who died with CTE for their important role. The impact of this change will save lives.”

The announcement comes just days before the Concussion in Sport Group’s (CISG) sixth International Consensus Conference on Concussion in Sport in Amsterdam, where a meeting of doctors, organised by FIFA, the International Olympic Committee, World Rugby, and others, is expected to debate their own position on CTE causation.

Their most recent statement claimed “a cause and effect relationship between CTE and concussions or exposure to contact sports has not been established.”

NINDS joins the US Centers for Disease Control and Prevention (CDC) in recognising CTE is caused by repeated traumatic brain injuries.” The CDC fact sheet defines repeated traumatic brain injuries as “concussions,

“We thank all the scientists who built the evidence and advocated for this change as well as the families of the brain donors who died with CTE for their important role.

The impact of this change will save lives.” and repeated hits to the head, called subconcussive head impacts.”

The NIH and CDC each independently concluding that CTE is caused by repeated traumatic brain injuries, like those suffered by contact sport athletes, military veterans, and victims of abuse, is expected to have significant public policy and medico-legal consequences.

Many international professional sports organisations that are part of the CISG are facing lawsuits from the families of former players diagnosed with CTE and former players exhibiting cognitive and behavioural symptoms that may be caused by CTE. Some sports

organisations have defended those lawsuits by citing the CISG statement on CTE causation.

Dr Robert Cantu, medical director of the CLF, has served as a coauthor of CISG statement to promote improved concussion care but has been on record disagreeing with their CTE statements.

Dr Cantu served as senior author on the paper that helped inspire NIH to change their statement on CTE causation. After Dr Paul McCrory resigned as chair of the CISG in March due to allegations, now proven, of serial plagiarism, Dr Cantu was invited to co-chair the scientific committee of the Amsterdam meeting.

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N R news

IRCM set to open registration by end of the year The new body created to hold a publiclyaccessible register of case managers - the Institute for Registered Case Managers (IRCM) - is aiming to open registration for case managers later this year, in a major stride forward for the profession.

The IRCM has developed strongly since its inception almost two years ago, with significant time and effort invested from its leadership team and the case management community in helping to shape its future.

The body is being established to focus on standards for case managers, bringing new levels of accountability and endorsement to the profession, for the protection of clients and assurance of their families, authorities and commissioners.

And now, the IRCM - created jointly by the British Association of Brain Injury and Complex Case Management (BABICM), the Case Management Society of the UK (CMSUK) and the Vocational Rehabilitation Association (VRA) - is looking to open registration for case managers soon, with the target of accreditation by the Professional Standards Association (PSA) remaining on track for 2023.

It is also building a supporter community, which now comprises stakeholders from across case management and associated sectors, with the IRCM particularly keen to add the support of more personal injury lawyers, law firms and Insurers.

While its public profile continues to grow, work continues in the background to ensure its application to the PSA is as comprehensive as possible before submission. Once registered, the IRCM will develop a voluntary register of registered case managers, endorsing their capability to practice.

Angela Kerr, chair of IRCM, said the hard work and co-operation of individuals and organisations from across the sector has enabled it to progress at the rate it has.

“We have a very clear plan and that is what we are all working to deliver, and I must say it is going really well,” she said.

“A big part of it has been getting the right team in place, which extends through our sub-groups and all of our volunteers and

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those who have shared feedback and insight, and we’ve had fantastic support for which we are very grateful and extend our thanks “People have been so engaged and our supporter community, which is growing all the time, have been excellent. The engagement from the start has been brilliant.

“We are hoping registration will open in by the end of this year , which is really not long, and that we will submit the application to the PSA towards the end of this year also . We’re working hard on that behind the scenes.

“But what is so important to us in what we are creating is that the public and commissioners are aware of IRCM, our goals and our reasons for doing what we’re doing.

“This has been a huge task, probably bigger than I envisaged it would be, but the fact we have such a great team of people with us on this journey is wonderful.”

The IRCM is seen as a huge step forward in the professionalisation of case management and its greater recognition - but awareness among those who need to know is fundamental, says Angela.

“What we really need to do is make sure

the public and commissioners are aware of the work we’re doing and what being a registered case manager means ,” she says.

“That’s probably our next challenge, to make sure all of those people who need to know about the IRCM, do know about us.

“By the process of registration, case managers demonstrate competence against case manager specific standards and their commitment to providing quality case management , which gives a greater level of assurance. There has never been this level of accountability within case management, so it’s a very big step forward.

“A very small percentage of the population will encounter a case manager, but for those who do, we want them to know the stringent standards they are working to as a registered case manager. That is very important in giving protection to clients and reassurance to commissioners.

“A big part of this awareness is growing our supporter community further and encouraging more of those who commission our services to be part of what we are creating.”

N R news

Revolutionary robotic spinal surgery ‘could cut recovery time’ Spinal patients at The Walton Centre NHS Foundation Trust have begun to benefit from a groundbreaking new surgical robotic navigation system – hailed as having the potential to change the future of spinal surgery in the UK. Called the ExcelsiusGPS, the new innovation will see patients spend less time in theatre and potentially reduce recovery time after major spinal surgery.

Consultant spinal surgeon and metastatic spinal cord compression surgical lead Miss Maggie Lee said: “This amazing piece of technology enhances what we currently have in surgery.

“The system enables us to operate with a higher degree of accuracy in navigation, so we can progress through the stages of the

procedure much quicker. There is also a reduction in X-ray imaging needed during the operation.

“This means patients will be in surgery for a much shorter time and therefore hopefully have a much shorter stay in hospital.”

The system at The Walton Centre – which has Centre of Excellence status for its work in fully endoscopic spinal surgery –involves a rigid robotic arm, tracked and fully navigated by a camera, which is then programmed to follow a trajectory pre-planned by our surgeons. This allows them to facilitate placement of spinal screws and interbody cages to an incredibly high level of precision.

Consultant spinal surgeon and clinical lead for complex spine Mr Simon Clark said: “Research into robot assisted navigation for spinal procedures shows that it’s considerably more accurate than previous freehand methods.

“This incredible system is not only going to allow us to improve accuracy and therefore clinical outcomes, but enhance patient experience and also improve training the next generation of spinal surgeons.”

Chief Executive Jan Ross said: “This exciting

new innovation is going to change the face of spinal surgery here at The Walton Centre and beyond.

“Our surgeons have already successfully operated on patients with the ExcelciusGPS navigation system and are planning to apply benefits of this new tech to many more procedures.

“The team has worked incredibly hard to get this project across the line, they are pioneering how spinal operations can be modernised for the NHS going forward. This system will mean a more efficient service for our patients.”

In collaboration with Globus Medical UK Ltd, the Trust will use the revolutionary equipment to deliver robotic spinal services. The Trust will also have the unique opportunity to become a training and education centre for the UK, showcasing the services provided to its patients on a national and international platform.

President of imaging, navigation and robotics at Globus Medical, Jay Martin, said: “It’s a significant milestone for both Globus Medical and the NHS Trust to collaborate through technology innovation to fundamentally change the future of spine surgery in the UK.”

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N R news

Significant rise in stroke among young adults A sharp increase in the incidence of stroke among young adults has been seen in a new study.

Using data from the Oxford Vascular Study, which includes data from 94,567 people registered with GP practices across Oxfordshire over a 20 year period, the occurrence of stroke was analysed by a team of researchers.

They found that between 2002-2010 and 2010-2018, there was a 67 per cent increase in stroke incidence among younger adults aged under 55, and a 15 per cent decrease among older adults. A similar divergence in incidence was not found for other vascular events, such as heart attacks.

Among young people who had a stroke, there was a significant increase in the proportion who were in more skilled occupations, particularly for professional or managerial jobs. This could suggest a role for work-related stress, low physical activity, and long working hours, each of which were more strongly associated with risk of stroke than heart attack.

The study, funded by the Medical Research

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Foundation, looked at all types of stroke, such as ischaemic strokes, caused by a blockage of arteries, ‘mini-strokes’ (transient ischaemic attacks) and bleeding in the brain (intracerebral haemorrhage and subarachnoid haemorrhage).

Findings from this new study reflect emerging evidence that young stroke is a growing problem in high-income countries. A separate, linked paper by the same authors – Dr Linxin Li, Dr Cathy Scott and Professor Peter Rothwell from the Nuffield Department of Clinical Neuroscience at the University of Oxford – showed similar divergent trends across other high-income countries in the 21st century, with a fall in incidence at older ages not being seen at younger ages.

The traditional view is that vascular risk factors, such as high blood pressure, diabetes and obesity, play a minor role in young stroke, but recent studies have begun to contradict this view.

Medical Research Foundation Fellow, Dr Linxin Li, said: “Our studies show a worrying rise in young stroke cases both in Oxfordshire

and in other high-income countries.

“We need better ways of identifying young people at risk of stroke, as current risk models are designed mainly for use in older people.”

Professor Peter Rothwell said: “We are not yet sure what is driving the increase in incidence of stroke in younger adults, but it is important that doctors don’t dismiss the warning symptoms and that risk factors are treated.”

Dr Angela Hind, chief executive of the Medical Research Foundation, said: “Historically, we’ve thought of stroke as only affecting older adults, but studies like this suggest a growing problem in young adults.

“Stroke in young adults can have a huge impact, often occurring when they are starting a family or already have young children to look after, and have yet to reach the peak of their careers. The economic, social and personal consequences can be devastating.

“More research needs to be done to increase understanding of the causes of young stroke and the best ways of preventing it. This is why we’re supporting researchers like Dr Li, who are pushing forward the boundaries of knowledge surrounding young stroke.”

N R news

ONWARD ARC-EX study reveals remote use potential

The potential of the ARC-EX device from medtech pioneers ONWARD has grown even further with the conclusion of its trial for athome use endorsing its feasibility and safety.

The ARC-EX device, set to be launched commercially next year, delivers non-invasive stimulation of the spinal cord, targeted to help restore movement and other functions in people with spinal cord injury (SCI) and other movement disabilities.

Recovery of over half with mild TBI ‘longer than six months’ More than half of people who experience mild traumatic brain injury (TBI) are not recovering after six months, a new study has warned.

A dedicated Commission by world-leading experts has highlighted the advances and persisting and new challenges in prevention, clinical care and research in TBI. Among a number of key challenges, the Commission’s report finds that more than 90 per cent of TBIs are categorised as “mild”, but over 50 per cent of such patients do not fully recover by six months after injury.

Improving outcome in these patients would be a huge public health benefit, the study notes.

A multidimensional approach to outcome assessment is advocated, including a focus on

Recently, the results of its Up-LIFT pivotal study confirmed its efficacy when used in clinics, with a global trial – including two sites in the UK – endorsing its ability to make statistically significant and clinically meaningful improvement in upper extremity strength and function.

And now, through its LIFT Home Study, its potential in the home setting has also been clearly shown, with 97 per cent of therapy sessions successfully completed and 100 per cent of participants completing the study with no serious adverse effects.

“Today’s results from the LIFT Home study support the potential for ARC-EX Therapy to be used safely at home, which would enable people with spinal cord injury to live even more independently,” said Dave Marver, CEO of ONWARD. “We expect to launch first in clinics, but as the community gains more experience with ARC-EX Therapy, we envision many patients will also want to use this technology at home.”

The ARC-EX device is set to launch in the second half of 2023 and will be the first commercial launch by ONWARD, which is using years of research and innovation to create innovative therapies to restore movement, independence and health in people with SCI. Its other main device, the ARC-IM, delivers

mental health and post-traumatic stress disorder (PTSD).

stimulation of the spinal cord through implant, and its huge promise was shown through the STIMO-BRIDGE study, which restored the ability of three paralysed patients to walk, run and swim, when combined with intensive rehabilitation.

In its LIFT Home Study, 17 patients were enrolled from five leading spinal cord injury research centres in the United States – Craig Hospital in Denver, Colorado; Shepherd Center in Atlanta, Georgia; Spaulding Research Institute in Boston, Massachusetts; University of Minnesota; and the University of Washington.

Participants performed training on activities of daily living three times per week over a onemonth period.

“To maximize recovery after spinal cord injury, it’s critical that we develop treatments that can be safely and effectively delivered in the home environment,” said principal investigator Candy Tefertiller, executive director of research and evaluation at Craig Hospital.

“Integrating home-based therapy not only facilitates opportunities for ongoing recovery, but also allows therapy to focus on more relevant activities for that specific individual.”

ONWARD said it now plans to discuss the findings from the LIFT Home study with regulatory authorities to define the appropriate approval pathway for home use.

successes in understanding and treating brain injury as well as the task ahead for policy makers, clinicians and researchers.”

Other key issues highlighted in the The 2022 Commission has been produced report include: by world-leading experts and was presented > Outcome after TBI is poorer in females at the Collaborative European Neurotrauma compared with males, but reasons for this Effectiveness Research in TBI project (CENTERare not clear TBI) at their meeting last week in Antwerp, > Major disparities in care, including lower Belgium. treatment intensity for patients injured by This is an update to the first Lancet Neurology low-energy mechanisms, deficiencies in Commission on TBI, which was launched at the access to rehabilitation and insufficient European Parliament in 2017. follow-up in patients with “mild” TBI The 2017 Commission set out priorities and > Advances in diagnostics and treatment recommendations to address the challenges approaches. in TBI from the perspectives of policymakers, clinicians, and researchers.

“The scale of traumatic brain injury around Since then, new knowledge has been generated the world is staggering, with 55 million people by large observational studies, including affected at an estimated cost of $400billion each CENTER-TBI and other studies conducted under year,” says Antonio Belli, Professor of Trauma the umbrella of the International Traumatic Neurosurgery at the University of Birmingham Brain Injury Research (InTBIR) initiative, and an author of the Commission report. designed as a coalition of funding agencies and “As a leading cause of injury-related death, scientists to advance the care for patients with this significant report pulls together both the TBI through collaborative efforts.

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S ilver Trauma re habilitation for the elderly af ter s e rious injur y A s t h e a g e d e m o g ra p h i c o f t h e c o u n t r y c o n t i n u e s t o r i s e , w i t h t h e o l d e r p o p u l a t i o n s et to c o n t i n u e to r i s e f o r ye a r s t o c o m e , t h a t i s r e f l e c t e d i n t h e p e r c e n t a g e o f a d m i s s i o n s i n to t ra u m a u n i t s a c r o s s t h e c o u n t r y.

Once primarily dominated by under 30s, trauma admissions nationally now see more than 50 per cent over 65s.

And for those newly-injured elderly people, the effects of the ageing process will count against them in the whole rehabilitation process - which is where the positive interventions of clinicians, multi-disciplinary teams and the whole support network comes to the fore.

This multi-faceted issue was addressed by experts at the Silver Trauma conference, hosted by Slater and Gordon and STEPS Rehabilitation, which brought together leading figures in their field from across the country to share their insight into how older people can best be supported after trauma and in rebuilding their lives.

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With clinical, rehabilitation and legal and financial viewpoints, the conference - held at One Great George Street in Westminster helped to put the topic of silver trauma firmly on the agenda, tackling the topics that will enable a new level of support for rehabilitation for the elderly.

A ‘silver tsunami’ is breaking on the NHS For those working in NHS emergency departments, they will be witnessing a “silver tsunami breaking on the NHS” says Professor Fiona Lecky, clinical professor in emergency medicine at CURE (the Centre for Urgent and Emergency Care Research).

Numbers of older people going to hospital

with major trauma have increased significantly, as shown from the Changing Face of Major Trauma in the UK report, published in 2015 when data was first collected in 1990, the average age of the major trauma patient was 36.

By 2006, this had gone up to 40, then by 2014, the median age went to 54.

The numbers of patients admitted to hospital in the 0-24 and 25-49 age groups was stable during 2004 to 2010 - but massive growth was seen among those aged 50 and over, and particularly in those aged 75 to 100 with major injury.

The signature injury is traumatic brain injury, says Prof Lecky, with 75 per cent of older major trauma patients presenting usually with subdural injury; polytrauma is much more rare in that older bracket.

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Falls from standing or low height has been a driver of this - “the proportion injured in low energy falls has gone up to over 50 per cent, from standing height or less than two metres - this means the number of patients has increased from, for example, 40 to 50 patients to over 150 major injury patients each year,” says Prof Lecky.

“There are actually very few patients injured by high-energy trauma, most of the patients aged 75 and over were injured in low-energy falls.”

Older people are more likely to be injured indoors, in their own homes - and as many older people - aged 70 to 90 - live alone, it can sometimes be hours or even days until they are taken to hospital.

Using data from the Trauma Audit and Research Network (TARN) - which, since 2012, has made it compulsory that all trauma-receiving hospitals send their admissions statistics - it has become increasingly clear the extent to which major trauma services are being dominated by older people.

“It is a real phenomenon,” says Prof Lecky, also research director of TARN. “In 2017, after a lot of in-depth study, we published the Major Trauma in Older People report, and the first thing we looked at denominator factors - was this silver trauma phenomenon purely due to ageing of the population?

“We don’t think it is, actually. In terms of the population, older people accounted for close to 20 per cent in 2005, and that had probably only gone up by two per cent in prevalence by

2014. But the proportion had gone up to 40 per cent in terms of major trauma patients by 2014.

“By and large these patients have always been there, but they weren’t being diagnosed or recognised.”

One of the biggest changes in this situation is the access to CT scanning, says Prof Lecky.

“Back in early noughties, it was very difficult to get a CT scan in major injury patients. Access to CT scanning is improving massively, we are now scanning more than 90 per cent major of trauma patients,” she says.

The NICE head injury guidelines in 2004 made it compulsory to CT scan older people after head trauma, which has massively changed NHS practice, she adds.

However, the reorganisation of trauma by NHS England in 2012, which sees an injured patient triaged for trauma - and taken to a Major Trauma Centre if deemed necessary can make things more problematic for the older generation.

“As we found on TARN, older people have a higher Glasgow Coma score, as we get older brains tend to shrink - so a far more occult injury can be much more difficult to detect at scene of injury, and therefore can more difficult to detect in triage at scene of injury,” says Prof Lecky, pointing to the fact that only 38 per cent of silver trauma patients go directly to a Major Trauma Centre, whereas that is 57 per cent in the 16 to 64 age group.

“They are also far less likely to see a consultant, because they are less likely to trigger triage tool, which pre-alerts the team at the hospital,” she adds.

This can incur a wait for a CT scan and being seen by a more junior medic, rather than the consultant who would be available had the scale of the trauma been communicated.

Once admitted to hospital, a secondary trauma to a Major Trauma Unit is also much less likely for an older person, says Prof Lecky.

Surgery delays can also be seen, with only 15 per cent of older people having an operation after admission, whereas that is 37 per cent in those aged 16-59 - neurosurgeons can often be less keen to intervene quickly due to issues often seen in older people like existing conditions and anticoagulation issues.

After admission, 16.59, 37 per cent get some kind of surgery - only 15 per cent of silver trauma will do. A lot of older people have conditions and anticoagulation issues to address before, but neuro surgeons far less likely to intervene.

While frailty can play a central role in the reasons that older people sustain brain injuries as a factor in their falls, the NHS is helping to address this through its comprehensive geriatric assessment, which can help to identify and tackle some of the issues faced by each older person.

“If we can get these patients seen by a geriatrician, this can reduce mortality by about 50 per cent,” adds Prof Lecky.

"Back in early noughties, it was very difficult to get a CT scan in major injury patients.

Access to CT scanning is improving massively, we are now scanning more than 90 per cent major of trauma patients"

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Holistic rehab and getting the building blocks right In supporting older patients after trauma, a holistic approach is vital. Time should be invested in getting to the root of problems and ‘thinking outside of the box’ is essential, says Dr Elizabeth Iveson. “(A review) has to be realistic and followed up. I could assess someone until the cows come home, but unless it’s followed up and reviewed regularly it won’t work,” says Dr Iveson, consultant stroke and neuro-rehab physician at STEPS Rehabilitation and Nuffield Hospital York.

“You cant do any comprehensive assessment in 20 minutes, you need an hour or an hour and a half minimum.

“There’s no rocket science to any of this, you have just got to really listen and be prepared to tackle small problems and try to control them, have some patience and work with the team.”

In supporting older trauma patients, one issue to consider as a priority is medication. While clearly important, medication can often play a role in the main cause of trauma in the elderly - falls.

“There is a lot of evidence the more medication you take, the higher the risk of falling is.”

“One of my observations is there is a big reluctance from primary care to stop medications that have been prescribed in hospitals by consultants, I think that is where us as community rehab professionals have a

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responsibility to guide GPs to try to proactively manage these patients.

“In over 65 year olds, they have a 27 per cent chance of having one fall a year, and that risk increases as they get older. Co-morbidities can lead to further medication, both prescribed and over the counter.

“If you don’t need to give medication, then don’t. In my work with pain, I use heat treatment, TENS, stretches, hydrotherapy is dramatically underrated.”

With rehabilitation, factors like pain and fatigue can be barriers - but through investing the time in the assessment, these can be identified and tackled effectively.

“I think there is some ageism in rehab, the perception that people are too old, they won’t be able to tolerate this,” says Dr Iveson.

“But actually in my experience, you don’t get to 90 without wanting to have as much as possible to get your independence back.”

The provision of rehab in hospital can sometimes be hampered by external factors, says Dr Iveson, which can be a barrier to progress for older patients.

“A lot of silver trauma patients get offered rehab in hospital, just as they are recovering.

The noisy, busy, overstimulating environment particularly after a brain injury - can add to the challenges they already face,” she says.

“The timing of rehab is absolutely key and tailoring it to that individual a real challenge for

the NHS in how we deliver that.”

With pain, for example, this can arise after a fall, which then leads to the spiral effect of a patient becoming sedentary, not drinking because they do not want to have to move to go to the toilet, causing them to lose muscle mass.

“Look in a very holistic manner, get the building blocks right,” says Dr Iveson.

“Often anxiety can be a big driver of pain, muscle spasm, what position you’re in.

Focusing on pain can make a huge difference on quality of life in the community.”

Frailty is also important to recognise in patients with silver trauma, says Dr Iveson.

“Often they come into hospital with relatively minor injury, they’re turned around quite quickly and go home, but then their functional decline is quite startling,” she says.

In a non frail person, they may look similar in terms of independence to a frail person the difference is after a minor trauma or fall, she adds.

And in a patient’s rehab, Dr Iveson stresses the need for bespoke, tailored rehab, without presumptions about their potential or capability.

“Beware of labelling - we have to advocate for our patients. People talk of this magical cut-off after two years where you won’t get any better, but that is utter rot,” she says.

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‘Time is brain’ The quicker medical teams can act, the more of the brain that can be saved post traumatic injury - but for older people, that can cause issues, says Dr Matt Wiles, consultant anaesthetist at Sheffield Teaching Hospitals NHS Foundation Trust.

The “fantastic but vulnerable” brain carries over 100 billion nerve cells and makes over a million new connections every second - but when it sustains trauma, it loses two million neurons, 14 billion synapses and 12km of nerve tissue every minute.

Crucially, each hour, it sustains the equivalent of ageing 3.6 years - which is clearly a problem in already aged brains.

“Time is brain, particularly when it comes to silver trauma,” says Dr Wiles.

Falls from low height continue to persist as a key cause of such brain injury in older people.

“My practical top tip is that when you hit 70, you need to make a decision whether to have stairs or alcohol in your life, you cannot have both,” jokes Dr Wiles.

“Stairs are the motorbikes of the elderly.”

Hospital admissions for TBI in over 65s have risen by more than 50 per cent since the turn of the century, but the pressure on resources can mean problems in older people accessing urgent care.

“The UK has a paucity of critical care hospital beds in comparison to across Europe and worldwide, and this inevitably leads to triage in terms of who we admit,” says Dr Wiles.

“We have a particular problem when we come to the older population. Comorbidities are far more common - diabetes, chronic heart disease, renal failure, chronic lung disease, all increase the risk of systemic complications and secondary issues.”

In addition, Dr Wiles points to the fact that silver trauma patients have largely been ignored by research studies, meaning management principles are being applied based on much younger populations.

“In the last 20 years, we have seen no improvement in TBI outcomes in critical care, mainly because of our ageing population,” he says.

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Adult social care considerations Law firm Rook Irwin Sweeney specialises in public law and human rights, with specialism in social care access and regulatory policy, and helps clients navigate the sensitive issues of mental capacity and best interests.

Partner Alex Rook discusses adult social care eligibility, NHS continuing healthcare and health and welfare disputes.

THE LAW IS THE LAW Acknowledging the ongoing lack of social care funding and its impact on staffing, Alex highlighted a recent report by the County Councils Network warned of a £3.7 billion funding shortfall over the next 18 months, with half a million people in the UK waiting for an assessment.

“That's the elephant in the room. But it isn't our problem. Because the law is what the law is,” he says.

“Real pressure in the system is not a reason to leave people without the support they're entitled to.”

Local authorities are required to undertake an assessment if there is an appearance of need.

DUTY OF CARE The Care Act states that local authorities (LAs) must conduct a needs assessment and determine whether an individual is eligible for support. They then have a duty to meet those needs.

Once their eligibility is determined, the LA must establish how they will meet the needs, prepare a care plan, establish the costs and then provide resources for those costs.

Alex explains: “The Care Act basically says, ‘we recognise there are some needs that we don't provide for. That's not because there isn’t a need, but because there’s a finite amount of resources.’”

In order for someone to be eligible for support from a local authority, first of all, their needs must arise from or be related to a physical or mental impairment or illness.

And as a result of the adult’s needs, they are unable to achieve two or more of the outcomes.

Finally, as a consequence, there is likely to be a significant impact on the adult’s wellbeing if they do not receive support for their need(s).

Outcomes include: > Managing and maintaining nutrition > Maintaining personal hygiene > Managing toilet needs > Being appropriately clothed

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If the individual is unable to achieve these outcomes and this has a significant impact on their wellbeing, the local authority should support them.

INTERPRETATION How exactly do you interpret what ‘unable to achieve’ means?

Alex explains: “The regulations say, if you're able to achieve it, but it causes significant pain, distress or anxiety, the rule still applies.

“If you're able to access the community, but it would cause you significant pain, distress or anxiety, you are treated as being unable to do it. And then the local authority must provide support to meet that need.”

Likewise, if you are able to achieve the outcome but it takes significantly long that would normally be expected, you are treated as being unable to do it. And if that would significantly impact your wellbeing, the LA should support that.

The Care Act also states that the term ‘significant’ is not defined by the regulations and must be understood to have its everyday meaning.

LAs should make an assessment according to what’s important to the individual.

Circumstances that significantly impact one person may not have the same impact on another person.

Alex says: “Quite often local authorities will have a de facto policy that says, ‘we don’t provide support for that.’ But that’s out and out unlawful.

“It's supposed to be person-centred looking at the wellbeing of that particular individual.”

TRANSPARENCY The hourly rate must be sufficient to meet the person's individual needs, otherwise, the LA is providing an unlawful care plan. Therefore, a blanket policy limiting hourly rates is ‘almost certainly unlawful.’ Alex says.

The law firm regularly challenges public bodies on this point and the argument is often successful.

ASSUMPTION OF FAMILY/CARER SUPPORT Family members are under no obligation to provide support to a relative in-need.

They can if they want to, in which case, their needs would have to be assessed against the eligibility criteria.

GOVERNMENT FUNDING AND THE SOCIAL CARE CAP The LA will conduct a financial assessment and identification of eligible needs. If the individual has capital of £23,250 or more, they are

ineligible for LA support and must self-fund.

This is increasing to £100,000 from October 2023. Below that level, LA can require a contribution from capital and/or income.

The value of the person’s home is not taken into account if they or a qualifying relative lives there as their main or only residence.

From October 2023, there will be an £86,000 cap on personal care costs. Any additional costs will be met by the state.

Alex says: “I don't think the government thought through just how dramatic that's going to be.

Because at the moment you have a huge number of people who have personal finances, and have nothing to do with a local authority whatsoever.

“As of October 2023, they will all go to the local authority and say ‘I want an assessment of my needs.’

“There's half a million people waiting for an assessment already before they even happens.”

CONTINUING HEALTHCARE This is administered by ICBs, formerly CCGs. The law is very different to local authority funding. But the principles of conducting an assessment to establish needs also apply here.

A referral can be made by anybody, but the local authority must refer when someone appears that they may be eligible.

A checklist is used to decide which assessment is appropriate. It is not means tested and all funding will be provided by the NHS. Alex says: “It is unlawful for there to be any delay in the provision of care where a public body is arguing with another public body. If they want to argue about it, they can argue about it in the background.

“If it turns out that the wrong body was funding, then the wrong one can give the right one their money back.”

Alex regularly sees cases where an individual is prejudiced while a dispute it going on.

This can also happen where an individual moves from one LA to another, or they move from children’s services to adult services within the same authority.

Court of Protection welfare disputes These disputes arise where there is debate about the best interest of an individual.

For example, children may believe that their parent is not well enough to live alone and should move into a residential home.

Or the children could be on opposite sides of the debate.

The Act states that if someone lacks the capacity to make a decision because of impairment or disturbance or their mind or brain, a designated individual can make a best interest decision.

Fighting for the seriously injured to have lifelong financial and health security Slater and Gordon’s specialist personal injury and clinical negligence teams have been fighting on behalf of those who’ve been seriously injured for over 80 years. Our award-winning legal experts are experienced in handling complex cases, and know just how important it is that our clients have access to the treatment, rehabilitation, accommodation and support they deserve and need.

We recognise the importance of introducing our clients to specialist, reliable and dedicated case managers early on, enabling them to reach their potential.

For life’s legal needs,contact Slater and Gordon’s specialist solicitors.

0330 995 6080

slatergordon.co.uk/personal-injury-claim

Personal injury | Medical negligence | Family law | Employment law | Wills, trusts and estates

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“The decision maker must consider, so far as it's really ascertainable, the person's past and present wishes and feelings, the beliefs and values likely to influence the decision if they had capacity, and any other factor relevant factors,” says Alex.

“This client group will often have already made their views clear about various scenarios.”

The act also says you must consult the views of anyone named or engaged in caring for the person or interested in their welfare.

Common welfare issues and how to resolve > Residence and care > Contact with family members or others, may include financial or other abuse > Sexual relations > Marriage > Medical treatment, including end of life care > Deprivation of liberty A ‘best interests’ meeting is a perfectly good course of action in many cases. There’s no need to involve lawyers or the courts.

Alternatively, or in addition, parties may request an independent assessment/report from a social worker, for example.

But if it cannot be resolved and it’s sufficiently serious, the case will end up in the Court of Protection where a judge will decide what’s in the individual’s best interests.

Alex says: “A lot of our work is urgent medical treatment cases where it could be a life or death issue. The Court of Protection, in relation to welfare, can act very, very quickly.”

HEALTH AND WELFARE DEPUTYSHIPS Health and welfare deputyships were introduced in the Mental Health Capacity Act. If the individual lacks the capacity to make decisions or look after themselves adequately, an appointed person can make welfare decisions on their behalf. This works much like power of attorney.

This is usually appropriate where there will be a series of ongoing decisions to be made about the person’s welfare.

‘You’ve got to nourish to flourish’ Why does nutrition even matter when it comes to rehabilitation? Sheri Taylor, director and specialist rehab dietician at Specialist Nutrition Rehab, uses an analogy to illustrate the crucial links.

“Pretend your body is like a house, inside this house is a 24 hour live-in renovation team.

Every time there is damage or something breaks down, the renovation team is there as quickly as possible,” she says.

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“The quality of the repair job is going to be highly contingent on the building materials and supplies you make available to them. Are you providing your team with brick, marble and high quality paint?

Or are you giving them duck tape and cardboard?” After major trauma, this is even more crucial, says Sheri.

“Your client’s body or house has been through the equivalent of a hurricane. There is structural damage, there is cosmetic damage and there is damage inside the house,” she says.

“The question is, what supplies are your clients making available to their renovation teams to repair that damage?

“Are they eating lots of vegetables and fruits, high quality proteins and fats, the equivalent of bricks and marble - or are they living on takeaway, fast foods, crisps, chocolate? Either the repairs will not happen at all or will not be to the highest standard possible.

“With older clients, there was already wear and tear on the house before the trauma even happened. For that reason, it is even more important for these clients to be eating nutritious foods.”

Sheri points to a number of key priorities to consider when supporting the recovery of older people post-trauma. Muscle mass is particularly crucial, she says.

“After all the life-saving strategies have been put in place, our next priority needs to be preserving muscle mass, which can be the difference between independence and not,” says Sheri.

“We all start losing muscle mass after the age of 30 - by the time you’re 80, that is down by around 40 per cent.

“Our silver trauma clients are already at a disadvantage before they end up in hospital.

Frailty is a major problem, and the reason

they’re frail is because they have less muscle mass.”

Other factors including bone density, skin and the gut also need consideration, she says.

“We lose three to five per cent of our bone density per decade, and up to four per cent when bed-bound. Physiotherapy should be introduced as soon as possible and nutrition is an important consideration, with a focus on adequate levels of vitamin D and calcium.

Treat any osteoporosis in the process,” says Sheri.

“Skin becomes less elastic with age, and as a result pressure sores are more likely. This becomes hugely problematic if that person ends up in hospital.

“Skin is one of the best examples of your renovation team in action. If you’ve ever had a client with a pressure sore, you will know how much that delays their rehab. I’ve met clients who have been bed bound for years through a pressure sore. They cannot get out into the community, their muscle mass and bone density are decreasing by the month.”

With regard to the gut, constipation can affect appetite, which can therefore impact ability to take in nutrition, says Sheri. It is important to get adequate levels of fibre and enough levels of fluid to get the gut moving “Malnutrition may already be a factor when an older person is admitted to hospital, but after a stay in hospital, up to 75 per cent can experience this,” she adds.

In this instance, the need for premium supplies is all-important, says Sheri, with vitamins including vitamin D, B12 and iron being important.

While nutrition is mainly associated with food, the need to drink and maintain fluid levels is just as vital. Kidneys in older age are not as effective and the additional problems caused here can impact on everything else, says Sheri.

No matter how severe your injury, there is still a life to be had.

All your rehabilitation needs under one roof.

STEPS Rehabilitation is a specialist residential facility for neurological and complex trauma injuries.

Contact us today to arrange your residential rehabilitation:

 0114 258 7769

 www.stepsrehabilitation.co.uk

Our purpose built, family-run facility in Sheffield is home to the very latest in rehabilitation technology from around the world. We combine technology with clinical expertise and therapeutic treatments to enable clients to reach their full potential.

S I LV E R T R A U M A

Making a financial settlement work in older age Does age matter when it comes to legal and financial implications of trauma?

In reality, it matters hugely, and age is a central factor in restrictions that may need to be made on an older client’s settlement to ensure it will stretch further and cover all of the necessary expenditure - both now and into the future.

While the need to purchase accommodation of a 75-year-old and a 25-year-old will be the same, the reality is that usually in similar circumstances, the older person will recover a lot less, explains Kate Nicklin, principal lawyer at Slater and Gordon.

Following the Swift v Carpenter ruling, a property purchase price is calculated by the amount of years a claimant may have remaining - which can have serious implications for an older person.

“For those claimants who are 25, that shortfall isn’t necessarily a problem because we can look to elements of the case like loss of earnings, the shortfall is manageable,” says Kate.

“The problem arises when you have a client who falls within the silver trauma category.

"The problem arises when you have a client who falls within the silver trauma category."

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For clients who are 65 or 70 their need to purchase accommodation may be the same as a 25-year-old - but their claim is likely to receive significantly less.

“Often, the client won’t have a loss of earnings claim to plug the shortfall - and any contributory negligence on their part may see a shortfall of as much as a further 25 per cent.”

Jenny Whitehouse, director and financial planner at Evelyn Partners, continues: “If a client has set their heart on a property, our job is then very difficult trying to make this possible - it is key to be involved sooner rather than later, ideally pre-settlement, to understand the client’s needs and requirements.

“Post settlement, we find that often the first thing clients want to do is go and buy their property. But if we aren’t involved soon enough, the remaining amount for the damages is very difficult for us to work with to ensure care is provided longer-term.”

In their care needs, for a young person their situation can change considerably over the years ahead - but for a silver trauma client, the costs can probably be better estimated; although given the reduction if life expectancy when compared to a younger person, there is less time to maximise the potential of the settlement through investment.

“The deterioration of the client impacts on the settlement. If the model of care changes, from directly-recruited to an agency model,

that can make a huge difference. We are finding that there are fewer case management organisations that have the CQC requirements to recruit support workers, so they are having to switch to agency models,” says Kate.

“What can case managers and MDTs on the ground be doing to help us with this? Keeping records is key, we need primary healthcare to stand out on their records to justify the agency model to the courts, which is so much more expensive.”

Quality of life is seriously impacted through serious injury, but says Kate, it shouldn’t mean efforts should stop in looking for things the clients wanted to do prior to their injury.

What are their hobbies and activities? Can they be supported to return to golf or to purchase that holiday home in Cornwall?

“If we can see there is very little headroom left on interim payments, we can work together to show that so the litigators understand it might cost this much today, but it could be another seven years before litigation is completed, so we need to forecast that forward,” says Jenny.

“I have plenty of private clients who have saved throughout their lives and have significant pension pots, and it can actually be those clients who had retired slightly earlier who might be more inclined to have an accident out on their bikes or while doing extreme sports - but in these situations, there might be money there that we can unlock through a pension, insurance policy or equity release.”

S I LV E R T R A U M A

‘For the silver haired, the halycon nights of solid sleep are far behind us’ Sleep and sleep problems are different in younger and older adults, and the natural protection sleep affords cannot be relied upon in the same way as the years pass, says Professor John A. Groeger.

And in cases of silver trauma, the power of sleep as a recovery tool decreases - however, cautions Prof Groeger, the importance of ‘eight hours a night’ should not be overstated.

“One of the things I think we think too much about is how long the sleep is - we need to think what the sleep is made up of,” says Prof Groeger, professor of psychology and founder of the Sleep Laboratory at Nottingham Trent University.

“Very few of us actually get eight hours, and very few of us would actually take eight hours if we were given it. Eight hours is a myth, it has never been true.

“There is an elegantly choreographed series of stages (of sleep) a person will go through throughout the night, which is much more important.”

Prof Groeger highlights the importance of slow wave sleep, where synchrony is achieved across parts of the brain - although slow wave sleep too reduces with age, and sadly can reduce further following major trauma.

“One of the things that happens with TBI shortly after the injury is that the brain heats and maintains a level of heat, when our brains are hot we don’t get slow wave sleep to anything like the same extent,” he says.

“Understanding and acceptance is a major area for the older injured. Cognitive abilities decline as we age and the more sleep complaints we have, the more cognitive decline is reported.

“Before an elderly client had their accident, they will already have been cognitively less able than they were 20 years ago.”

Prof Groeger points out that a decrease in sleep duration and increase in sleep disorders happens as a natural part of ageing - giving clinicians further problems when it comes to supporting those who also have trauma to deal with. Pain and medication can adversely impact sleeping, adding further to its consequences.

Between 60 and 80 sleep disorders have been identified, with some impacting women more than men and vice versa, but generally a reduction in sleep duration affects men.

“People who sleep badly are four times more likely to get a respiratory illness than people who sleep well - our inflammatory system is compromised by the lack of sleep,” he says.

“We are more likely to be hit by that disease and our ability to recover. Growth hormone, change in bone structure, degeneration, they are all affected by sleep.”

In healthy older individuals, they will spend over an hour each night awake - “this is the best it gets”, says Prof Groeger.

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S I LV E R T R A U M A

The ‘double whammy’ of spinal cord injury and older age For those newly injured in older age, or those who have been injured historically, the impact of spinal cord injury (SCI) alongside that of ageing can have a profound effect.

The additional problems faced by elderly people, from frailty to declining muscle mass and bone density and the greater probability of co-morbidities, mean that SCI can be devastating.

“When you have a spinal cord injury, it is pretty much every body system that is being affected, so you are effectively getting a ‘double whammy’ in terms of age,” says Mr Pradeep Thumbikat, consultant surgeon in spinal cord injury rehabilitation.

“As you age, the impact of SCI is felt earlier.

You have less resilience, less muscle mass if you look at the impact of a hospital stay on muscle mass and the rapid decline, think of what will happen through SCI.” However, the onus, even for older patients, is to maximise their rehabilitation potential and giving them maximum independence.

“It is not just about preserving life but about giving a purpose in life,” says Mr Thumbikat, pointing to the huge progress that has been made in SCI recovery potential since the

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creation of the Stoke Mandeville unit just before the end of the Second World War. “There was a huge leap in rehabilitation interventions, and much of what we do today has its roots in what was done around that time,” he says.

“We saw an increase in life expectancy, improvement in quality of life and concept of re-integration into the community.”

However, Mr Thumbikat believes that despite the vast advances, the resources are still not plentiful enough to fully service demand, pointing out that statistics about such demand only focus on new patients, not historically injured survivors.

“Current availability specialist beds in the NHS is not adequate to meet those who are newly injured - and then if we factor in the need for all of those people living with SCI, the demand is likely to be much much greater and unfortunately that is still not reflected in many of the reviews,” says Mr Thumbikat, consultant at STEPS Rehabilitation and clinical director of the Spinal Injuries Centre Sheffield.

“Currently, patients stay for three or four months and then are discharged with very little care into the community - is that the right model for our older patients?

“Anecdotally, it would appear that patients

"We saw an increase in life expectancy, improvement in quality of life and concept of reintegration into the community." would benefit from a short period of stay and then discharge into the community, with readmissions periodically, to try and improve upon what they’ve achieved - the current model may not be serving our older patients very well.

“It is really about prioritisation of a scarce resource. There is a resource crunch and how we balance that out is a wider question.”

Community support also continues to be a major challenge, he adds.

“Over the last two or three years, it has become almost non existent when we are discharging people into the community, especially the older patient who is very disabled with very little hand or arm function,” says Mr Thumbikat.

www.motomed.com

ArmMotus™

EMU

next-gen rehabtech changing the game for patients

Through the launch of the robot hailed as having the potential to change neuro-rehab as we know it, Fourier Intelligence is stepping up options for patients in their recovery further still. NR Times learns more about its pioneering device 30

“It makes rehab fun you don’t realise how much work you’re doing” Through the use of the ArmMotus™ EMU, neuro-rehab is being redefined for people around the world who are living with brain injury, spinal cord injury and neurological conditions, with its revolutionary approach to recovery helping to change lives.

The ArmMotus™ EMU - the world’s first 3D back-drivable upper limb rehabilitation robot - is designed to support upper limb rehabilitation, and through its ability to engage patients in games, created especially to advance their recovery potential, it can chart their progress like never before.

In a unique approach to rehab robotics, the ArmMotus™ EMU - created by global rehabtech leader Fourier Intelligence - used a games-based approach, combined with artificial intelligence, to precisely measure every movement trajectory, strength, cognitive ability, ROM and motor control ability, and then generate a report after each training period.

TECH

This gives unparalleled insight for the therapist into the progress and current ability of the patient, enabling them to deliver more bespoke rehabilitation and a more personalised approach.

Unveiled last year, the ArmMotus™ EMU has become a highly significant introduction into the rehab robotics market, with the device being hailed as helping to redefine the future.

The upper limb device has also since won many awards – the iF Award, the Red Dot Design Award, the Medical Design Excellence Awards and the most recent, the Good Design Award.

“Current neuro-rehabilitation models primarily rely on extended hospital stays or regular therapy sessions which require close physical interactions between rehab professionals and patients,” said Zen Koh, Founder and global chief executive officer of Fourier Intelligence.

“The COVID-19 pandemic situation has challenged this model and as a result, many neurological patients are not receiving sufficient therapy. There is an urgent need to rethink conventional neuro-rehabilitation therapy.

“The new ArmMotus™ EMU provides that solution. Equipped with clinical intelligence, it provides personalised therapy, technologybased solutions, coaching capabilities and remote monitoring.

"The implementation of fun functional games with embedded artificial intelligence also provides clinically motivating therapy to patients as well as giving caregivers and healthcare practitioners confidence."

“The implementation of fun functional games with embedded artificial intelligence also provides clinically motivating therapy to patients as well as giving caregivers and healthcare practitioners confidence.”

Users of the ArmMotus™ EMU speak of its ease of use and the joy of using its gamified approach - which uses a range of games including table tennis, cooking, and fishing, to simulate activities of daily living - and is a hugely different approach to the traditional rehab many people have experienced in the past.

One patient, who is recovering from a spinal cord injury, said: “I really like that it helps me get my arms away from my body and I get a lot of exercise with it.

“It makes it fun in a way because you’re playing games and you don’t realise how much work you’re doing.

“But then afterwards you definitely feel like you’ve been doing something, you feel you’ve been working your arms. It’s been very useful for me; it has helped a lot.”

The ArmMotus™ EMU, jointly built by Fourier Intelligence and the University of Melbourne Robotics Laboratory, took six years to bring to fruition and was led by Professor Denny Oetomo.

The robot is the product of a hugely successful collaboration, one of many Fourier Intelligence is creating around the world with key sites in neuro-rehab and academia, to help pioneer the future of intelligent solutions which have the power to improve patients’ lives.

Bringing together the huge tech capability of Fourier Intelligence’s team with the academic excellence of Professor Oetomo and his team, the launch of the ArmMotus™ EMU has been welcomed around the world.

Covering the whole continuum of rehabilitation, it makes use of Fourier Intelligence’s sector-leading force feedback technology, which recreates the touch of a therapist’s hand and supports the user to adjust the assistance or resistance according to their needs.

It also supports easy training setup in sitting and standing positions, as well as accommodating different training arms. The device integrates different scenarios in the game so that users can train on strength, motor control and joint ROM in one training session, making the whole rehabilitation process more efficient.

Through its ability to deliver real-time analysis and personalised feedback and reporting, a therapist can tailor a targeted therapy according to the patient’s training outcomes and needs, maximising the potential of each session.

Its levels of engagement through gamesbased rehabilitation is also helping to drive patient outcomes through better levels of participation and effort.

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SPONSORED

7 Tips to Help Manage Maternity Leave Cecily Lalloo, Managing Director of Embrace HR, a consultancy specialising in HR support to Deputies and Case Managers, says that maternity leave can be a tricky time; both for the expectant mother dealing with pregnancy, and for the employer responsible for managing the employee.

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The scenario The recruitment campaign has been on-going for a while. The ideal candidate, Wilhelmina, is offered the job, and accepts, and a start date is agreed.

An offer is sent to her along with all the necessary requirements for checks such as DBS, drivers’ licence, pre-employment health questionnaire.

The start date is arranged, and a contract is drafted and sent, as well as mandatory training information.

Wilhelmina powers through her training and probationary period, she settles into the role and three months later she informs her manager that she is pregnant.

This may be an inconvenience to the organisation and the team. However, it is a time of celebration for Wilhelmina as it is her first pregnancy. She is anxious and excited. As an employer it is important to acknowledge how she feels and to support her as much as possible while she continues to do her job.

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What you should know

Here are our 7 Tips 1. Breathe – when you hear the news!

2. Don’t make comments about the short length of time she has been with you or how the training has just finished, and it is inconvenient.

5. Let your HR adviser or manager know about the pregnancy. HR will have a maternity pack with useful information for the employee and reminders of the process and important dates.

3. Congratulate Wilhelmina, ask how she wants her news to be conveyed to colleagues.

She may not want anyone to know just yet.

She may want to convey the news herself.

If her work requires lifting and handling, she may need to advise colleagues earlier rather than later.

6. A risk assessment for pregnant mothers must be undertaken. This is best done by someone who works closely with Wilhelmina.

The risk assessment should be reviewed periodically throughout the pregnancy. When Wilhelmina returns to work, a new mother's risk assessment should be undertaken.

4. Advise her that she must notify you formally in order to benefit from maternity leave and pay.

It is helpful to send her information so that she has a guide of what to notify and by when.

7. Discussions about holidays, time off for antenatal visits and maternity leave dates need to be diarised and discussed, and cover for absences arranged.

The same statutory obligations apply to managing maternity leave whether the organisation is small or large. Whether there are 2 workers or 2,000 workers.

Often there is more than one person who is pregnant or on maternity leave at the same time.

It is important to manage the process carefully.

There will be many conversations as changes take place, not least if baby arrives early and your worker is ill. Speak regularly with your pregnant mother so that the management of her time at work and the absences are covered as well as possible.

Remember that if you decide on a temporary worker to cover whilst she is away, that person must not be offered the role permanently. If there are any changes to her job role, communicate with her.

Ensure that you arrange how your employee would like to be communicated with whilst on maternity leave. Women on maternity leave can often feel isolated from what is happening at work so it is important to make sure they still feel part of the team. There is a balance to be struck, let her know what you will contact her about and that you or your HR person can be contacted at any time.

Have a discussion before your worker starts their maternity leave about how much contact they would like, as preferences will vary. Send news updates and invitations to social events and make sure you keep them informed of any important team decisions. If you want to ask them to attend work or carry out some trainings whilst on maternity leave, arrange this via Keeping In Touch (KIT) days if they are interested.

Pregnancy should be a happy time for your workers who will be going through many changes. However, it is a normal life event, and most people can work long into their pregnancy with the right management and adjustments. Adjustments that may be necessary for shift workers are different working times and refresher training in lifting and handling or remove some elements of the job and replace with others. Occasionally, if adjustments cannot be made, suspension may be necessary. Speak with HR before taking this decision.

Provided you understand the minimum legal requirements, the best way to show support as an employer is through excellent communication.

The more your employee feels they can be open about their preferences and intentions, the better placed you will be to respond.

It is important that the maternity leave process is started as soon as notification of a pregnancy is received.

Embrace HR will be happy to discuss any of your maternity leave and pay queries, or any family leave queries you may have.

Contact us on 01296 761 288 or email admin@embracehr.co.uk.

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SPONSORED

Lessons learned from two neuro-rehab journeys Experts from brain injury care provider TRU Rehabilitation were invited to offer their insights at What’s Your Story? - a recent discussion on life with disability at the People’s History Museum, hosted by researchers from the University of Liverpool. Dr Trevor Landry, consultant clinical psychologist at TRU Rehabilitation, and his colleague Joe Dooley, assistant psychologist, shared two life stories that were drawn from many years spent by the team at TRU striving to understand the lived experience of brain injury.

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Stor y one: Loss, identity and acceptance in brain injur y rehabilitation ‘Dr John’ was a medical professional who wanted to help and heal from an early age. As a young man he worked diligently in his studies in order to qualify and progress to his medical training.

He had a very supportive family and friends who were always there to prop him up when times became challenging for him, however, he was fiercely independent and did not easily ask for help even when he struggled. John was caring, ambitious and wanted to make a difference in the world. He worked hard throughout his life and managed to establish himself as a reputable paediatric surgeon, well known in the medical community.

John never married and mainly socialised with other health professionals. He loved traveling and speaking at conferences. He also enjoyed nature, hiking and traveling around the world.

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During one holiday in Spain whilst traveling through the Sierra Nevada mountains John was involved in a road traffic collision. He lost consciousness.

He was taken to a local emergency ward initially where he was put into an induced coma to help the medical team to stabilise multiple injuries.

Amid other physical injuries from the impact of the collision, he also incurred a traumatic brain injury (TBI).

John awoke following surgery in the hospital and did not know where he was and could not remember what happened. This was not temporary post-surgical disorientation and would be something that John would have continuous difficulty with. He would regularly awake in his hospital bed unsure of why, when or where he was for many weeks. This would sometimes lead to frustration and attempts to leave the hospital.

John also had post traumatic amnesia and could not remember the incident or a week on either side. He also struggled more generally with his short term memory, was more impatient and was experiencing quite volatile emotions, including uncharacteristic anger and frustration. John required specialist rehabilitation support and a decision was made to transport him back to the UK. Early on in his rehab John required support to orientate him to place, date and time along with reasons for his rehabilitation. This was done several times per day. This helped John to feel safe and calm. John was assessed with memory difficulties requiring rehabilitation support so he was introduced a range of compensatory strategies to aid recall and support planning day to day activities. He also developed an acute tremor in his hands which meant that he no longer had the fine motor skills he once was renowned for as a surgeon.

John had difficulty initiating and planning his daily routine. This was not due to motivation or mood, it was because he incurred significant damage to his frontal lobe, an area of the brain intrinsically involved with planning and initiating activities. When left to his own devices, John would be inactive and this would leave him frustrated and isolated.

An integral part of John’s rehab was to support him to engage with a daily planner and routine.

This involved a range of activities including practical everyday shopping and cleaning tasks but also vocational plans at gardens or with art projects.

Denial and expecting a cure John’s medical training taught him that illness could be cured with surgery or medication.

These beliefs impacted on John’s early engagement with his rehabilitation. John was expecting a cure and that he would return to the same life and career he cherished so much.

John was impatient with himself at times. He had always held high expectations of himself throughout his life and the same was true in his rehab. His expectations that things would return to exactly the way they were became a barrier and impacted on his mood. He could be self-critical and would push himself too hard at times. TRU Rehabilitation’s team supported John in understanding his brain injury and the cognitive changes he had been experiencing.

This included competing a focused battery of neuropsychological assessments and sharing with him areas of strength and difficulties. This helped John to start to come to terms with his injury and how this has impacted on his memory, behaviour and mood.

Our physio and OT team spent a lot of time supporting John to mobilise, manage fatigue and understand some of the physical changes he has experienced. Over weeks and months, John started to accept using some mobility and practical adaptions to aid everyday living.

John was hard on himself and quite selfcritical about his progress in his rehab. Our psychology team helped John to develop skills in self compassion using an acceptance and compassion focused integrated therapeutic approach.

Feeling robbed John felt robbed of his life and career he worked so hard for. He found out after his injury that the driver of the car who he collided with was intoxicated. John would fluctuate between self-blame and anger at the injustice that he was amidst. This was maintained by long and complex litigation that would not come to fruition until years after his injury.

This prevented closure and deferred a sense of justice he felt was warranted, given the accident was not his fault, stole his career and his sense of identity from him.

Our team supported John to understand his anger in the context of loss and unfairness. We worked with John to understand strategies to recognise and cope with these states.

John liked to channel these emotions into his art work, and found some respite also

with using mindfulness and self compassion strategies he was learning.

Identity, acceptance and reconnecting with personal values John was no longer Dr John in his eyes. He had lost everything and at points in his rehabilitation even his sense of worth and identity.

John struggled for many weeks emotionally when trying to reconcile this very real and tangible loss.

Some thought John was depressed, but in reality he was grieving, a natural and important part of navigated unwanted change and rehabilitation.

A critical part of John’s rehab and work towards accepting these tragic changes was to support him to reconnect to his core interests and values.

John was caring, creative, ambitious and wanted to help others, but he no longer had his role as a surgeon to uphold these values. One day in rehab, John asked if he could help our medical team with the daily work of taking blood pressure readings.

John engaged on time, maintained better focus than he had in a long time and started to engage with conversations with other service users while helping with this role.

John started to accept that he still had skills he could share and he became more and more engaged with plans to find adaptive ways to use these skills in other settings.

This included being an active leader and participant in a range of peer support groups and ultimately volunteering at a local hospital to support.

Acceptance and moving on After approximately a year in our rehabilitation service, John had progressed through his programme and support was put in place to help him to transition into more independent living. While on a volunteer placement John encountered an old friend from his time as a surgeon, who happened to be a researcher.

They developed a trusting bond and John began to understand that he did not require his hands to help or heal people and that his words have had a positive impact on other service users who may be struggling as he had.

With support he started to write about his experiences, attend conferences and he continued to be an active member in his local brain injury support group.

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SPONSORED

Story two: A coaching perspective on the struggles and the triumphs after brain injury, presented by Joe Dooley Jamal was 21-years-old, fresh out of university and never really knew where his life was heading. He had studied psychology and always had an interest in understanding people and thrived at making others happy.

He had what some may describe as ‘limited life experience’, recently out of full-time education and having only worked part-time in bars to fund his student lifestyle. Jamal knew it was time to settle into a full time job He had heard about TRU Rehabilitation at a recruitment fair at his university, approaching psychology graduates due to being a service which was uniquely psychology led. He secured a role as a rehabilitation coach.

His initial emotion was excitement to learn more about brain injuries, however this was overridden by nerves and apprehension. Jamal had never worked directly with individuals with needs before and was unsure how he would take to the role.

His first experience consisted of extensive training sessions with professionals in the field, educating him and a cohort of other new starters. They learned about the effects of brain injuries and how each individual can present so differently.

Alongside this, he was made familiar with the techniques required of his new job role including de-escalation techniques, restraints and frameworks that TRU Rehabilitation carries throughout their services.

The training somewhat prepared Jamal for his first day on the job but his real learning really began when he first started to support the individuals who reside at our service. He spent time shadowing more experienced coaches which gave him great insight to the job role and filled him with excitement to help our client base.

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Jamal spent time studying the individual care plans of the clients he would be supporting.

This insight to their background really hit home for Jamal. It demonstrated how quickly someone’s life can be so massively altered.

It left Jamal with a huge sense of empathy towards the individuals and motivated him to supporting them in the best way he could.

The client base varied massively in terms of support Jamal was required to deliver, in relation to the extent of injuries and their progression in their rehabilitation journey – some being at an acute stage in their injury and others having progressed a lot more since their admission.

Jamal realised how crucial his role was in helping these clients reach their potential and help them set foundations for their future.

He felt the pressure of this and quickly adapted to the role which was required of him. One of his main internal motivators towards fulfilling his job role adequately was constantly telling himself “if this was my family member, I’d like to think they would get the best support too”.

The job didn’t come without its challenges.

Jamal would often find himself in situations in which clients would quickly become abrupt towards him, often verbally abusive about his abilities, his appearance and would often be undermined by clients due to his age.

He knew not to take this personally due to the extent of the clients’ injuries and although hard not to take to heart, quickly developed a thick skin to these comments.

There were days when Jamal undoubtedly felt unmotivated towards his job role and abilities.

Seeing clients often refuse to engage and feel like his efforts were pointless. Through conversations with other staff members and reminding himself of the impact of injuries that he was able to remember that consistency of client programmes was crucial, although often slow paced, his efforts was ultimately beneficial.

Upon supervision with his shift supervisor, Jamal was reassured that his positive attitude and good working rapport with the clients that he had built up since starting had been noticed.

This gave him a sense of accomplishment.

He took pride in his abilities and reminded him why he had been so drawn to the job. He spoke about his desires to progress through the company and be able to make as much of an impact as possible.

Jamal often spoke to his friends from university about the job which he had so passionately fell in love with. It became clear to him how valuable the experience he had working directly

with individuals with acquired brain injuries was in his professional development.

Jamal soon progressed into the role of a ‘primary coach’. This gave Jamal more responsibility of working closely with a particular client he had built a good professional relationship with.

He was essentially working with the wider MDT to ensure his primary clients programme was running efficiently for the most beneficial progression. With support of the unit rehabilitation coordinator, they introduced a new structure and new compensatory aids to support the client in their pathway, in relation to their support needs in the goal of becoming more independent.

With his new role of primary coach, Jamal was proud of his progression but felt immense pressure of fulfilling the role adequately enough.

He would often find himself on his days off, worrying about what he had implemented.

Would it work?

What else could he do? He found it hard to find that disconnect with his job and appreciate his time away from work. This had a negative impact on Jamal’s passion for the job. He found himself resenting the job role and responsibility, the one he once found so much joy in.

He spoke to his supervisor about this and he was told how he needs to take time for himself.

With the recommendations, Jamal made a conscious effort to do this. He found upon his return to the workspace he was able to find much more joy and lessen the pressure upon himself. He soon found that sense of accomplishment again, that thrive to do the best he could for the clients.

Within the space of 6 months, his primary client made huge progress. The aids Jamal introduced proved to be a huge success in implementing a stringent routine and something the client responded well to in their programme.

The client eventually moved through the pathway to another of our units, a precommunity based service.

It was hard for Jamal to say goodbye to the client, all the hard work had paid off and the client was one step closer to their end goal.

It reinforced a sense of reward and how this job, one he was once he was so unsure of, was one he was destined to do.

www.trurehab.com *Names, roles, gender and other contexts have been changed in order to protect the identity of anyone involved.

INTRODUCING THE NEW

NR TIMES D I G I TA L E D I T I O N

THE IMMERSIVE

D I G I TA L EXPERIENCE

w w w. n r t i m e s .c o. u k

SETTING THE

A bi-monthly deep-dive into the world of neuro-rehab

AGENDA AND

Powerful lead generation and data gathering tools for advertisers

Informing and inspiring over 5,000 rehab professionals every two months

D R I V I N G D E B AT E

Shareable, interactive and engaging throughout

IN NEURO-REHAB

Three formats to suit all preferences – immersive, flip book and accessible

A zero carbon, tree-saving alternative to its print predecessor Embedded video and audio to bring stories to life Content which crosses professional and geographic borders

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Belonging and allyship - how can you achieve this?

A sense of belonging is vital to a person’s psychological health and to the function of our society as a whole. But why does this so often not happen? What can we do to play our role in achieving this, and supporting those who do not feel that sense of belonging and allyship?

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Dr Shabnam Berry-Khan, clinical psychologist, case manager and director of PsychWorks Associates, discusses this hugely important topic, which continues to adversely affect so many minorities in the UK and around the world October is Black History Month here in the UK. In this month, we are reminded to promote and celebrate Black contributions to our British society and to foster an understanding of the impact of Black history on the UK today.

While this month originates from Negro History Month in the US from as far back as the 1920s, Black History is not just an American thing. You do not need to dig too far to learn that British history also has a significant part to play in slavery and the poor treatment of Black people since.

You also do not need to think too hard to appreciate that this month is not the only month in which we can reflect on Black history. Indeed, Black history plays a part in modern Britain every day. With recent acknowledgments about unconscious bias, institutional racism, disparities in health and justice service treatment and outcomes for the worst, and modern policies that have seen people sent "home" (aka Windrush), the Black experience is not really historical so much as current. In fact, this Black History Month’s theme is ‘Time for change: Action not words’. Perhaps this statement can be seen as a clue about the state of play today.

However, this article is not meant to be about Black History Month per se, but it does provide a convenient backdrop for the real topic that I want to raise here: belonging. Fitting in. Feeling like a member of a group. An affinity for a place or situation.

A secure bond. A safe place.

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Let's do a little thought experiment: imagine the last time you went on holiday abroad to a country where people looked different to you, ate different foods, wore different clothes, where you had to learn how to navigate a new area, and they spoke to you in a language that you didn't fully understand and they didn't speak your mother tongue. How did you feel?

Hold that thought. As I'm writing this, I am fully aware that some of us will have to use our imagination because English is a first language and a lot of the world can speak some English. What a privilege.

Let's go back to that thought experiment: What if you had to extend your stay indefinitely (because of, say, a relationship/work/political issues), and the onus was on you to learn to fit in. And when you did learn the language, cook the food, work out what was where and blend in with the local clothing, you still didn't settle or feel part of the community. How would this impact you?

Have you ever had to check in with yourself about whether you belonged in your society, in the country in which you lived? You are lucky if the answer is “No".

This is unlikely to be the case for many minoritised groups, including those who identify as "non-white". I mean, diversity is literally written on our skin and possibly heard in our accented voices and choice of language.

Psychologically speaking, the need to belong refers to an emotional need to affiliate with and be accepted by members of a group. This could be any size or type of group from school to clubs to work colleagues to hobbies or a religious group.

However, a sense of belonging involves more than simply being associated with others. It is centred on gaining acceptance, attention, and support from members of the group and reciprocating the same back. Validation.

A sense of belonging fosters health psychological health by a reduction in anxiety, depression, loneliness and hopelessness. In other words, when someone feels like they do not belong, they are more likely to develop unhelpful emotional responses that only make a sense of belonging even less likely. Those who feel a stronger sense of belonging are more likely to feel they can be authentic, which results in more confidence, a more positive outlook, more commitment, more engagement, better health and an improved quality of life.

In the main, people thrive when they feel they belong. And society benefits from the best versions of people. Indeed Maslow of Maslow's Hierarchy of Needs places "belonging" in the middle of the pyramid, bridging basic human needs (food, clothing; safety in work or housing) with the more complex, internalised needs (esteem and actualisation). So, why aren't we fostering this more, I hear you ask?!

I guess it's a little more complicated than that, with many factors influencing that vital sense of belonging. Some factors are related to early life experiences, such as childhood traumas, poor attachments to parents or caregivers, bullying at school or political unrest challenging the belief that the world can be safe. Belonging is also influenced by societal factors such as discrimination, racism, xenophobia, disrespect, political ideology and social disadvantages.

What actions can you take as an individual or in your work space to increase that muchneeded sense of belonging for all? > Know thyself: values connect people.

Know what you as an individual, family, social group, organisation stands for and seek relationships on that basis. > Listen with curiosity and not judgement: being able to hear stories and experiences with an open mind, we will find that we can relate and find wisdom in those around us.

Regardless of difference. In this process, we find we rehumanise those we speak to. > Acceptance of experiences: that some people have experienced difficult times and this may be because they were simply born to a particular set of parents, in a body that may put them at a disadvantage, with preferences that

But, it certainly seems like when we focus on difference, we humans end up in discomfort, dispute, conflict, and even war.

In the wake of the 2020 Black Lives Matter protests, following George Floyd's murder - thanks to people's use of social media to unveil the horrors in the world today - we can all become bystanders. Witnesses to injustice and oppression. It becomes our problem.

When someone is seen as so different that they are worthy of a treatment, that suggests they are worthless and unhuman. That they do not belong to the human race. The truth is we witness transgressions all the time, whether we admit it or not. It might not be as extreme as murder, but it might be instead a racial microaggression we witness or a decision that is made that plays on privilege rather than merit. And we say nothing despite knowing it's wrong and alienates or makes it harder for someone else.

Different and otherness 1 Belonging and allyship - 0.

We are not powerless in ourselves and the time is now more than ever to speak up and support those who are oppressed and disadvantaged.

This is what Action is. This becomes more than words. This is allyship, moving beyond shortterm gestures and focussing on long-term behaviour-based support.

make it more challenging to be authentic, in a socio-cultural setting that does not value them. If you can go as far as bearing witness to their pain - as uncomfortable as it might be - you will hear a story that is true, but also undoubtedly healing for the story-teller. > Be an ally to those who have experienced hardship as a result of socio-political pressures: stand up for those who are burdened by the diversity they represent. In the workspace, support inclusion practices and contribute to the discussions (a much easier task when you've heard those stories!) Social belonging is a basic human need and it is hardwired into our genes. We have no choice but to accept this point, else we run the risk of crushing what could be good for all of us. To quote Maya Angelou:

"Do the best you can until you know better. Then when you know better, do better. "

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TECH

Changing the game for stroke survivors H av i n g b e e n i n the planning for t wo d e c a d e s , e X R t Intelligent Healthcare has brought new and cutting-edge options t o t h e m a r ke t f o r s t r o ke rehabilitation, bringing g a m i f i e d p hys i o t h e r a py together with AI to create better insight into remote rehab than eve r b e f o r e

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NR Times meets CEO Dominic Holmes to learn more about the difference it is set to make to stroke survivors in their ongoing recovery “The research behind this dates back 20 years we were waiting for the hardware technology to catch up” For many years, researchers at Ulster University have investigated stroke rehabilitation and the potential of digital, game-based technology in supporting recovery. But while the research was there, it is only more recently that the required hardware technology has entered the marketplace.

Through the launch of ReNeuro by eXRt Intelligent Healthcare, which brings together the latest cutting-edge gaming development with now readily-available wireless VR headset technology, the game is being changed for stroke survivors.

With its range of in-house developed games, all geared around rehab, and the use of artificial intelligence (AI) to determine whether rehabilitation is effective in more detail than ever before, ReNeuro has already demonstrated its efficacy with a patient trial, showing the potential of remote rehab in times prior to the pandemic - before it had become widely known or accepted within healthcare.

Now making inroads into the NHS and other healthcare providers, with plans for global expansion thereafter, eXRt is helping to up the ante for stroke rehabilitation, while increasing

the options in home-based therapy.

“We believe we have a role within the care pathway, which is going to make the transition from clinical to home rehabilitation a lot easier, and rehab at home a lot better to engage with.

We think this brings something very new for patients, and for the NHS and healthcare,” says CEO Dr Dominic Holmes.

From the initial research from Ulster, including being the focus of Dr Holmes’ PhD, it was established that gaming as a form of rehabilitation could hold significant potential for improving patient rehabilitation - but how to achieve that with the technology of the day was another challenge.

“Back then, the technology was clunky, heavy, it wasn’t suitable for patients. But we managed to get a lot of good data research, so we knew what we wanted to do. When technology started to catch up, that’s when we could really move forward,” says Dr Holmes.

“We were starting to realise that the problems for patients were two-fold. Firstly, they weren’t getting enough physiotherapy, NHS departments were overstretched even before COVID, and it has become worse over the years. But also, that some patients weren’t engaging enough.

“Gaming has become one of the biggest entertainment industries, so we thought, why not engage people in that way? By using gaming, we can let them have fun while doing their physiotherapy.”

TECH

Through Dr Holmes’ research, he recognised the crucial role AI could play in this domain something which is now helping eXRt to really push boundaries in stroke rehab today.

“Using AI, we monitor, track movement behaviour. Image processing will track movements in their hands, down to their fine finger movements. We track that data and perform analysis on it,” says Dr Holmes.

“By doing this, we then have the ability to adapt each game to suit each individual person motor skills, which is really important when they’re doing it at home. If you’re playing an off the shelf game remotely but are having problems and finding it difficult, at some point, you’re not going to be able to play.

“But through AI, we could see the difficulties and switch and change things a little bit automatically, so we can overcome those difficulties and make it so you can continue to rehab successfully.

“You’ll find in physiotherapy that some exercises may be painful for patients, or they might not be doing it correctly. But through AI, we can see that and make the changes to their rehab to improve this.”

From these findings, eXRt was born, bringing together the expertise of Dr Holmes in research and healthcare technology development with that of Dr Darryl Charles in AI and gaming development. Together, they led the creation of a new business with

"Our main goal is to initially supply the UK healthcare systems such as the NHS, but we do see ourselves ultimately being global." the ambition of redefining rehab for people recovering from stroke.

Embarking on a study which concluded in March 2020 - only days before the UK went into lockdown - the potential eXRt held was clear.

“We wanted to assess how effective this could be used in patients’ homes, could they use it themselves without any major interventions from a physiotherapist or technical support team, that was at the root of everything,” says Dr Holmes.

“The results were fantastic. We saw we were able to give participants an extra 26 minutes of physiotherapy per day, and after six months, we saw a 50 percent reported an increase in improvements to Quality of life such as their mood, mobility and self-care.” eXRt was formally launched in October 2021 as an Ulster University spin out company, with its suite of stroke rehabilitation games ready to be

used on VR headsets both in clinical and at-home settings.

Guided by the University’s dedicated Research and Innovation team at Ulster, eXRt founders were given support in harnessing their extensive research into a valuable service for patients at home and beyond.

“These improvements continue, we’re constantly adding to it on the strength of further feedback from a leading healthcare provider with the needs of the end user in mind. We’re in the process of adding video chat functionality so patients can also have remote physiotherapy appointments,” says Dr Holmes.

Going forward, the business is now looking to see the role its technology can play in the care pathway, optimising it for therapists and patients alike.

“After a stroke, a person will have a wide range of medical appointments and therapies, but through our take on physiotherapy, you’re increasing the dose of that in a way that is accessible and engaging to patients,” says Dr Holmes.

“And the real beauty of it is that a physiotherapist doesn’t need to be present. Therapists can spend more of their time with people who really need the in-person support, and see more patients.

“People who are suitable for remote physio can benefit from that, with the appropriate supervision.

We imagine that once they are in hospital, patients will be introduced to ReNeuro, and then they can take it home to continue their rehabilitation. If it's in a clinical setting, you can have a try and they can be trained in how to use it. It makes that transition between clinical and home so much easier.”

Now, eXRt is looking at potential adoption across the NHS and private healthcare, as well as into other conditions too.

“There is a lot of interest, and we are talking to the NHS and private healthcare about what we can do for stroke patients, our longer-term ambition is to alsolook at other health areas that we could support and benefit from ReNeuro,” says Dr Holmes.

“We are looking at brain injury and other neurological disorders, such as Parkinson’s, where exercise can be beneficial, and physiotherapy is important.

“We are also doing a project at the moment on healthy ageing, to help older people have a more active life, so they’re less likely to have other health problems. The exciting part about eXRt is that is can be applied to a number of issues experienced by our ageing population, improving mobility and giving individuals improved quality of life.”

“Our main goal is to initially supply the UK healthcare systems such as the NHS, but we do see ourselves ultimately being global. As we grow as a business we plan to target the US market in the hope that patients in the US can also benefit from ReNeuro.

“We’re concentrating on the UK currently and are excited about the potential to make a difference in patients’ lives in our own country.”

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Richardson Care Restructures to Provide Seamless Care Pathway Richardson Care has restructured its specialist services for adults with acquired brain injury or learning disabilities and complex needs to provide a seamless and flexible care pathway.

The Northampton-based care provider has six residential care homes and a long proven track record of delivering successful outcomes for service users. It remains an independent family business and Director Laura RichardsonCheater explained the reasons for the restructure: “We have always placed the service user at the centre of their care and the business has evolved to deliver different types of rehabilitation and therapy. We realised that by making some small changes, we could redefine our services to make them clearer for commissioners and take the business forward to a higher level of excellence.

“With six residential care homes, we have the flexibility to provide a seamless rehabilitation pathway. This enables the individual to progress within the supportive environment of the Richardson Care family.”

THE SERVICES ARE: 1 . ABI assessment & complex diagnosis unit, The Coach House 2 . ABI rehabilitation & transitional service, The Richardson Mews 3 . Long-term community neuro-rehabilitation service for men, 144 Boughton Green Road 4 . Transitional & long-term LD & complex needs service, 23 Duston Road 5 . Long-term community LD & complex needs service, 2 & 8 Kingsthorpe Grove

Laura continues: “Our admissions policy has always been to place an individual in the home that is most appropriate – both for their needs and the needs of the existing residents. This restructure has formalised that process while retaining flexibility.

"We have over 30 years of experience in supporting people with acquired brain injury and complex needs and have found that they need an initial period of stability before we can fully assess their needs."

“We have over 30 years of experience in supporting people with acquired brain injury and complex needs and have found that they need an initial period of stability before we can fully assess their needs. The Coach House is the ideal environment for this because it is self-contained and secure. After this period the individual may stay in the Coach House or move to our transitional or long-term community rehabilitation services. We are also planning to provide high-input supported living accommodation for people with acquired brain injury or learning disabilities.”

Richardson Care combines a unique homely environment with a therapeutic regime devised by an experienced multi-disciplinary team of therapists. The focus on community is clear in all of the homes where a wide range of activities are on offer. This supportive environment contributes to engagement in therapies with the ultimate goal of service users being able to live a happy and fulfilling life.

For more information call 01604 791266 or visit www.richardsoncares.co.uk

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Funding the SCI research to improve quality of life Life after spinal cord injury can be immensely difficult, and is often exacerbated by a n a r ray o f eve r yd ay h e a l t h i s s u e s a s a c o n s e q u e n c e o f t h e i n j u r y.

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Here, NR Times meets Stoke Mandeville Spinal Research, whose focus is on funding the research that will improve the lives - and crucially the quality of life - for those who live with these challenges.

Every four hours, someone in the UK sustains a spinal cord injury. Not globally. Just in the UK. A shocking statistic which lays bare the scale of how widespread such injury is, with many of those injured sustaining lifelong consequences. Of those people with spinal cord injury (SCI) in the UK, 50,000 live with paralysis.

While vast advances in neuroscience now give hope that paralysis may not be permanent, and a cure may one day exist - certainly, therapies which aim to restore some movement and function are very much on the horizon - what exists for those people living with SCI to improve their quality of life now?

That exact focus is the priority of Stoke Mandeville Spinal Research. The charity, which was born from the work of consultants at the world-famous National Spinal Injury Centre at Stoke Mandeville, exists to fund and inspire the research which will help people living with SCI to enjoy an improved quality of life through the greater understanding of their priorities and concerns.

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Through funding - since 2019 SMSR’s annual grant rounds have led to five supported projects which are now underway- it is hoped that new treatments and therapies may emerge, and those working in SCI can benefit from the dissemination of best practice.

And the focus of its research, on priorities which will make a difference to the everyday lives of people with SCI, is at the heart of SMSR. “We were established to carry out quality of life research in SCI and that’s still our focus today. There are people out there who are looking for a cure for SCI, and that is really important, but realistically, a cure is decades away,” says Derek Cutler, research grants and operations manager at SMSR. “We’re here to help people to live better with their injury in the meantime. And the research to help us achieve that is absolutely vital.”

The charity itself was formed in 2006, but took a huge step forward in 2013 with the advent of the priority setting partnership, established by the then-research director Dr Joost van Middendorp, who is now chair of the scientific advisory board. The tenth anniversary of this huge milestone will be marked by the charity next year.

“This piece of work identified the key priorities and the key research questions that are important to people with spinal cord injury, as well as for those who care for them and clinicians treating them. This is when we had a definition of ‘quality of life’ priorities for people with SCI, understanding what is important to them,” says Derek.

Four priorities were identified by the charity as a result: > Assistive technology for upper limb function > Neuropathic pain > Pressure ulcers > Urinary tract infection

Research is now targeted in these specific areas, with a number of projects already backed financially by SMSR whose work is helping to shed new light and potentially deliver transformative results for SCI patients in key priority areas.

“We're very focused in what we fund, we want to fund things that have a really strong potential to support or to improve lives of people with SCI, very practical things that are really going to make a difference,” says Derek.

“The research we have funded today is, we believe, very promising. As one example, there is a project running from St George’s Hospital in London, which involves patients here at Stoke Mandeville, and involves a piece of targeted brain surgery to help relieve neuropathic pain.

“Hearing people describe what that pain is like is one of the worst bits of my job, it sounds absolutely horrific, experiencing a stinging, crushing pain, which can be very resistant to treatment, day and night.

“The approach used in this research is not a new technique, it has been used to treat pain from cancer in the past, but has never been tested on people’s SCI. So that is one very exciting project which could make a huge difference to people’s lives.”

In 2019, SMSR became a grant-making charity, with an annual search for key projects or research ideas, from which one is chosen as the focal point by its scientific advisor board.

This year is the first the search has been extended internationally.

“This was very significant for us, in that we expanded our remit to support SCI centres and research centres across the UK, and now internationally too,” says Derek.

“We established a competitive bidding process and our scientific advisory board assess the proposals and make recommendations on what should be funded. That changed the way we work.

“The five research projects we have now have come out of this process and every year we see more and more interest and applications. We’re very encouraged by the response we see and the proposals we receive, there is some really very exciting and important work being done to improve lives.”

But while SMSR is committed to financing the groundbreaking research that can change the quality of life of so many people with SCI, its ability to do that relies on fundraising. The charity is funded entirely on donations, which - as for all charities - has become a much more difficult task since early 2020.

“It's very difficult, the current economic environment as it has been for the last few years has made it very tricky,” says Derek.

“Also, I think because while SCI is, fortunately, pretty rare in comparison to something like cancer, people often like to give to charities where they have a connection. There is a smaller pool of people for us to tap into for our fundraising, which does make it difficult.

"With our 10th anniversary next year, we’re hoping to make that a focal point for our fundraising, and to encourage people and businesses to get on board and support us" “But the funds we raise go towards changing the lives of the people who are living with SCI, and those who will sustain SCI in their lives.

Our first projects funded through the grant programme will be coming to fruition in the next few years, which will be very exciting, and will show what our fundraising goes directly towards achieving.

“With our 10th anniversary next year, we’re hoping to make that a focal point for our fundraising, and to encourage people and businesses to get on board and support us.

To be able to continue to make a difference to people’s quality of life is what we are all about, and we are so grateful for the support in being able to do that.”

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‘Survivors have a life we help them live it’ As one of the pioneers of case management in the UK, Community Case Management Services has played a significant role in helping to revolutionise community brain injury support.

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As the business marks its 30th anniversary, NR Times meets its founder Maggie Sargent and learns more about the life-changing work of Community Case Management Services and its commitment to enabling people to rediscover a ‘normal’ life

From its origins in summer 1992, helping to pave the way for the acceptance and recognition of case management in the UK, Community Case Management Services has grown into one of the key players in the sector.

Supporting people with brain injury and other complex needs to maximise their potential and rediscover independence and the joy of life, many clients have been with the business across the three decades it has been in existence.

And keen to show what is possible in their recovery, Community Case Management Services has become known throughout the

neuro-rehabilitation sector for its adventure trips - taking clients with complex needs on holidays that offer the chance to surf and ski remains unique, and has seen countless life-changing moments for people living with severe disability.

For Maggie Sargent, award-winning founder of family-owned Community Case Management Services, the principle of the business is simple.

“Our clients just want to be normal - and that's what we try to create,” she says.

“That's really where we come from. Our model is to create a life that is active, that is enjoyable, that is ‘normal’. Life is for living is what we say.

“And that is a baseline for what we do, because we find that is so important in clinical growth. They have lives to live and we help them do that. I can’t say that enough really, because that is what we are all about.”

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Community Case Management Services setting new standards in brain injury support While a new phenomenon in the UK in 1992, case management was established practice in the United States - and through the creation of Community Case Management Services as an extension of care reporting business Maggie Sargent & Associates, the foundations for case management were being laid on this side of the Atlantic, too.

“Community Case Management Services was formed at exactly the same time that the role of the case manager became accepted in this country,” says Maggie.

“I asked some of the people who I worked with at that time who were doing reports with me to become case managers, because they were really experienced in setting up care packages. There was a huge need to do follow-up work.

“This was at a time when more and more brain injury rehab centres were being set up, but what was happening with them (the patients) afterwards? Nothing. And they were being re-admitted because there wasn’t any follow-up.

“So there was a clear need for something to support these people.”

And from the desire to create a business to do that has come one of the best known and most dynamic clinical case management companies in the sector, which has supported several of its clients for almost its entire three decade history.

Community Case Management Services as a business has grown significantly during that time, with clients coming from across the UK and even Europe, with cases from locations including Poland, France and Ireland. Kate Russell joined Maggie as a director in 2002, and a hugely capable and continually developing management team has been formed to give the infrastructure needed to deliver the high-quality service it does.

Maggie names two things as her proudest achievements - the clinical governance of Community Case Management Services and the relationships it builds with clients.

“We have very strong clinical governance, every single incident that happens within our group of clients is reported to me as head of clinical governance - that is a role I have played from the start,” she says.

“I always know what is happening within our clients’ homes, and this is discussed

as a team each week. Obviously, we act immediately if necessary, but we discuss with the case managers weekly. And I’m very proud of that clinical governance, we involve our case managers and have got very good experience at the top of the team and a very good mixture of disciplines within it. That is very important.

“Also, the fact that some of our clients have been with us for 30 years. We have known them in hospital as children and now they are middle-aged adults. They are very much part of our family, we have come to know who they are, they have been on many trips with us, and we have helped them to live their life.

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“The team we have is central to us being able to support them as we do. The support workers are key people, they’re guided by the therapists, but when it comes to doing things like our trips, the family feels safe for their loved one to go away with the support team. And that’s what we are - we’re one family.”

The family ethos is very much a feature of Community Case Management Services.

The close-knit team clearly know their clients extremely well, with Maggie’s own family also being willing to lend a hand in the support the business provides.

Her three children - Annabelle, an upholsterer; William, owner of Accessible Dreams, which enables the case management company’s adventures for people with disabilities; and lawyer Francesca - are also involved in supporting the work of Community Case Management Services with its clients.

“Annabelle has a disabled-friendly studio that we can go and visit, the plan is that we're going to do more in Brighton so that people can do a bit of vocational work there,” says Maggie.

“William has worked for us as a support worker, he’s very good at working with people with brain injury, they enjoy the young company. He runs the trips and comes on them with us, he’s very involved. He’s now studying for an MBA so he can learn more about the business side.

“Francesca worked for us as a carer during her time at university, and while she’s a lawyer now, she’s around if there is anything we want to talk to her about, she’ll always support us from the legal perspective.

“But while this is my family, Community Case Management Services is a family and everyone is part of that, clients, the team, we all are part of this.”

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Life-changing trips and exhilarating adventures In a unique approach to rehabilitation and in showing what is possible, Community Case Management Services has become known far and wide for the adventure trips it arranges for clients.

Surfing trips are commonplace - four will run this year - as are trips to the Community Case Management Services house in Normandy, France. Two trips to safari in Africa, where participants will also help in an orphanage, are planned for next year. While the trips have run for several years, but were forced to pause during COVID, happily they are now back with a vengeance.

Throughout her career as a nurse, Maggie has passionately believed in giving people living with brain injury and other disabilities the opportunities to thrive, to live their lives - and, crucially, to feel ‘normal’ again. This is something that runs throughout Community Case Management Services - and their trips are a prime example of this.

For the client on the ventilator, whose dreams of becoming a ski instructor were cruelly dashed by spinal cord injury, skiing was something he never imagined he would ever do again.

But for Maggie, the ‘impossible’ is very rarely that, and sure enough, she and the team found a way.

“We want to prove within this organisation that anything can be done,” she says.

“This young man really wanted to go, so we found a way. He didn't have a claim, so my daughter ran a marathon to get money and we persuaded some solicitors to help sponsor the trip.

“We took the team of nurses, he had a spare ventilator, we did it all properly. The most important thing was to maintain his breathing and everything was fine. It was all possible.

And he had the most wonderful time. He was up before me every morning, it was exhausting!

He was the first man on the mountain and the last one off.”

Such life-changing experiences are precious for the client, their family, and for the Community Case Management Services team too, says Maggie.

“They are the best moments - they’re certainly my best moments,” she says.

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“But it’s about more than the trip, more than the experiences. The point for us is to show that anyone can move forward if you give them goals. They need their own individual dreams.

Seeing them smile is everything.”

Inclusion is hugely important to Maggie, and enabling people to rediscover the joy of life after injury or disability.

“What we want to do is to give them another life,” she says.

“They love having the opportunity of meeting other people and of getting a life back. A lot of people we work with have lost their network.

They may be very disabled, they may have communication problems - but they need to live and have dreams and aspirations.

“They need every year to think, as we all do, ‘What’s the aim? What do we want?’ When we get to January, it’s good to plan a holiday or activities, and that’s what we do. It’s not just the humdrum - we want to give people something to really look forward to.

“In the early stages, it’s about coming out of hospital, it's about getting your therapy, and the therapy needs continue. But they move out into the community, and what then? How can you boost their serotonin levels? How can you get more from them?

“And that’s why we do the trips. We don't make any money, they’re not commercial trips.

There isn't a profit margin on it. We want to be able to take anyone, I won't do any trips that are not wheelchair accessible, because everyone has to be able to go, if that is what they want to do.

“But for us, we do need to hold our nerve - it’s a big undertaking to do these trips. You’re arriving at the airport with 12 wheelchairs, you’re first on the plane and have already upset everyone because they’ve got to wait for you and we’re an hour late taking off. But the camaraderie between us when we’re first on the plane is great.”

The roots of the trips can be traced back to Maggie establishing the Oxford and Bristol group of the Silverlining Charity, which proved to be a hugely effective way of bringing people together in activities and enjoying life.

“There was a client who I wanted to go to London, but he wouldn’t go. So I thought ‘Well if he won’t go there, we’ll bring the Silverlining to him’. And we set up the group. He is now so proud of being the founder member. Previously he didn’t do anything and was very, very lonely.

But the impact of him being part of this group has been huge for him,” says Maggie.

“It was a very good way of getting people to socialise and enjoy a normal life. We’ve done

art, fashion shows, all things that people might want to do with their lives.

“You've got to do as much as you possibly can.

I think people often don’t realise how much untapped potential there is out there. We’ve got people writing songs, painting pictures, doing very creative activities. It can be very hard for people to motivate themselves after an injury, but that is where we as a team can really help.”

Leading the development of case management As the founder of one of the UK’s first case management businesses, Maggie has been at the forefront of the vast progress of the sector from the very beginning.

Using her background as a nurse, she took inspiration from the work being done in case management in the United States to drive forward the creation of a new profession and with it new levels of support nationally for people living with brain injury and other conditions and disabilities.

“I came at it from a care perspective, I was a nurse who worked with clients in the community and I saw the difficulties in accessing the services. I saw that we needed a label so we could have a professional role in changing this,” says Maggie.

“We weren’t a nursing agency - we were much more than that. We saw the need for our role in discharge planning, future care planning, making provision for people’s future. We were people who were interested in making sure there was provision for proper brain injury rehab.”

Having laid the foundations of case management, others were keen to follow Maggie’s lead, with many of today’s bestknown and respected case managers and case management businesses being supported by her and Community Case Management Services

at early stages of their development.

“I couldn't do it all on my own, at first there was only me doing my bit with a couple of other case managers, and obviously we've grown over the years. Both as Community Case Management Services, but importantly collectively in case management,” says Maggie.

“Case management has changed completely.

I think it's a fantastic service which has developed its clinical roots, which has come through having CQC registration and is probably one of the most important things to happen.

“The way we work has moved on a lot. For example, in the very early days it was frowned upon that you would get your clients together, which might sound rather strange now. But thinking and practice moves on, and we now have regulation and standards.

“I think the litmus test of a case manager could be: ‘Do you have their mobile number? Can you contact them 24 hours a day?’ It was always meant to be a 24-hour service, with the kind of clients we deal with, it’s not a Monday to Friday role at all.”

Maggie was also fundamental to the creation and growth of the British Association of Brain Injury and Complex Case Management (BABCIM), and has played a role in its ongoing development - and that of case management ever since. Recently, she returned to be part of its Council.

“We needed BABICM and I helped to set up the first steering groups. I was at the BABICM table from the very beginning and am one of the very few that are left as a sole owner of a company that is still a family company doing case management,” she says.

“Thirty years later, I’m back on Council because of the fact that I still believe so passionately that we're doing the right thing. There have been a lot of changes in case management, a lot of the family firms have disappeared. And I feel very strongly that we have to fight for the standards.

“I don't want to see any reduction in stance, I think BABICM standards are brilliant. We now have proper systems in place, we are regulated, and there’s a wide range of case management too.

“There have been so many changes in case management that I’m glad we have BABICM. We were always worried that the market for case management would change, and people would see it as an opportunity to make money, there can be a tendency for people to look at financial targets rather than clinical ones - but clinical governance is very important to me, and I think BABICM has a very important role to play in ensuring this remains the priority.”

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SPONSORED

Putting vocational rehab at the heart of recovery

Through engaging clients in vocational tasks, Think Therapy 1st is supporting countless people to exceed expectations in their recovery and fulfil their goals.

NR Times learns more about the value of vocational rehab and the potential it could hold in supporting people to return to work and other activities from their lives pre-illness or injury.

With the latest employment statistics revealing that almost 2.5million people in the UK are currently out of work because of long-term health problems - an all-time record high - the focus is turning to what more can be done to support those who may be able to return to the jobs market.

One in three people in this country have a longterm condition - more than 14 million people but after six months off, less than 50 per cent will ever return to work. Such stark statistics help to illustrate the scale of the problem.

For Think Therapy 1st (TT1st), the answer - at least in part - lies in vocational rehabilitation.

This approach runs throughout everything its team does, with chosen activities all geared around the client’s end goals and planning the route for them to get there.

And through vocational activities, which are fundamental to TT1st’s occupational therapy-led functional rehabilitation approach, the impact can be significant on both the mental and physical progress of a client.

“I think it's pivotal, because without a regular productive role - not necessarily paid employment, it could be voluntary work, or caring for a relative or a child - it is very hard to rebuild your life and have a sense of purpose,” says Aimee Crane, operations director and OT at TT1st.

“We all need a productive role in our lives. It’s central to our function, our identity, our social status in life, and it impacts our families and communities too. That’s why we put such emphasis on vocational activities from the earliest stages.”

Early intervention is key in TT1st approach, which follows its Specialist Rehabilitation Occupational Therapy (SROT) model and looks to support clients to achieve their goals - however ambitious or unlikely they may seem at first - by engaging them in activities so enjoyable many do not realise they are part of their rehab programme.

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Rebuilding lives after serious injur y With Henry, a 21-year-old seriously injured in a motorbike accident, his goal was to return to his apprenticeship as a bricklayer. But having sustained polytrauma, manual labour seemed an unlikely task to return to.

“I first met him when he was in a hospital bed in his living room with a wheelchair next to him.

He was becoming de-conditioned and losing stamina, and of course physical strength is vital in bricklaying,” says Aimee.

“He had become low in mood and frustrated because he just wanted to be back with the lads and be part of that camaraderie on the building site. So we started looking at what a return to work would like, from early on in his rehab programme.”

“We took everything back to basics, looking at the demands of the job and broke down

each task. What are the demands cognitively, physically, emotionally? We highlighted the things that would prove a challenge for him and made a plan.”

Henry’s mother had an allotment, which proved a valuable asset in the functional rehab programme Aimee devised.

“We'd be doing things like digging up vegetables, moving pallets from one side to the other, with everything geared around his bend and reach, his ability to squat and kneel, his general mobility, and lifting and carry ability. To him, it felt like he was just helping his mum with her allotment,” says Aimee.

“Those movements are all needed in bricklaying, which is very repetitive, and you could be kneeling for a significant period working on one task. We tried to mimic that in the allotment and then build up his tolerance.”

Having initially returned to work as a telehandler

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driver, a less physically demanding role, Henry’s return to bricklaying began with sessions on the ‘dummy’ building site at his college, building upon the skills and tolerance he was gaining in his TT1st sessions. Happily, he has now returned to bricklaying full-time and has completed his apprenticeship.

“He did so well and his confidence changed massively when he could go back to work,” says Aimee.

“I think the reason we got the amazing outcomes we did was because of the early intervention and early opportunity for rehabilitation.

“The statistics on how many people don’t return to work after illness or injury or shocking, and you can understand how it could happen to people like Henry. But through engaging in vocational rehab at the earliest stage possible, it just shows what can happen.”

The examples of life-changing levels of success are many and ongoing, with clients continuing to exceed the expectations set for them initially post-injury.

“There are so many, which is what we are all about, that’s what we want to achieve for our clients,” says Aimee.

“I’m working with a client at the minute who worked night shifts in a care home before her injury; she has now gone back to work on reduced hours and is working days rather than nights. That in itself is great, but the changes in her self-esteem and confidence are huge.

“We’re also seeing that in her standardised assessment scores around her psychological wellbeing. It has been a massive boost for her.”

Vocational rehab - vital to recover y Through its SROT programme, vocational tasks are at the heart of TT1st’s approach to rehabilitation. The business takes pride in how everything a client does will have some rehab benefit to them, nothing is wasted, and every activity is geared towards progress.

Returning to work can often be a key concern for clients, which is addressed by TT1st at its initial rehab needs assessment.

Through its vocational screening, it establishes the current work status against the pre-injury status, as well as the main job roles undertaken pre-injury and the level of effort, be that physical, cognitive or psychological. This can then inform the treatment programme.

“Our therapy model is informed by the Person, Environment and Occupation model (PEO), and as part of occupation, we’re looking at that balance between self-care, productivity and leisure,” says Aimee.

“We complete a vocational screening the first time we meet a client, which is very important in informing our treatment programme and understanding the client’s expectations around work. Do they think they’re going to go back to work? Is that reasonable?

There is often work to be done around their expectations and understanding of their injuries “There is often work to be done around their expectations and understanding of their injuries, because sometimes people won’t be able to go back to their pre-injury roles. It’s about something that matches their key strengths.

And by being able to get in there early, we can get the maximum outcomes for them.”

Aimee also believes the changes to the Fit Note seen earlier this year, which enable occupational therapists to certify for their clients, has been a valuable step forward.

“For the majority of people, there may be some ways that they can get back to work with the right adjustments and changes in place,” says Aimee.

“We do a work capability assessment, where we'll assess the client within the demands of their job. We’ll also assess the workplace, which could include one or two different work sites depending on what the job entails, to

look at work capability and making any reasonable adjustments.

“Through the change to the Fit Note, it does feel like the role of OT is getting the recognition it deserves. We can now make sure our clients and their employers get more detailed and tailored advice around measures that can be considered to enable a employee to return to work, including a phased return to work, amended duties, altered hours and workplace adaptations.

“We come to know them well during our time with them, and our central to their rehabilitation, so we are really well placed to give this kind of assessment.”

While the positive impact of vocational rehabilitation can be seen in examples like Henry’s, it is not widely used - if at all - in acute or community settings.

Aimee believes is has a much more central role to play to help rebuild lives, and particularly to tackle the issue of how to get people who could work - and want to work - back into a position to do so.

“Vocational rehab and productivity as occupational therapists, it’s what we trained to do, but in an acute setting and then in the community, it wasn’t a priority at all,” she says.

“It was either getting them out of hospital safely and carry on the recovery at home, or it was looking at supporting them with adaptions and equipment. The majority of people I came across when I worked in both of those settings were already long-term unemployed - but vocational rehab could be so important in helping to address that.

“At TT1st, absolutely everything we do from the outset is about rehabilitation, which is a world away from what it is like elsewhere.

We have seen such positive results with our clients, who often don’t even know they’re doing rehab, they just see the changes to their lives and confidence.”

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C A S E M A N AG E M E N T

CMSUK Awards 2022 meet the winners The creativity, commitment and tenacity of case managers was the overriding theme of the CMSUK Awards 2022.

Acknowledging the contribution of individual case managers, case management companies and those delivering vital services or innovations in support of their work, the awards highlighted the best practice being seen throughout the sector.

Case management (large) company of the year Winner: HCML Finalists: 3HUB, Unite Professionals

Judges spoke of how impressed they were with the quality of submissions, which saw nominations from across the worlds of case management and neuro-rehabilitation.

With a theme of Overcoming challenges in an ever-evolving world - chosen to recognise the

HCML was the choice of the judges in recognition of its “culture of continually improving client outcomes and their rehabilitation experiences”.

The case management company also showed commitment to staff support and development, with specialist training and CPD opportunities.

HCML’s support for the wider case management community was further highlighted, with representatives on Institute of Registered Case Managers (IRCM) committees.

All three finalists were praised by the judging panel for their work in supporting best practice and innovative solutions.

turbulent times in which we continue to live and work - it marked the first-in person CMSUK Awards since before the COVID-19 pandemic, bringing together hundreds of guests from across the country for a celebration lunch in London.

Partnership initiative of the year Winner: Proclaim Care and Hudgell Solicitors Finalists: Jenni Rudd CM Ltd and Chroma, Lauren McCluskey LMC Case Management and STEPS Rehabilitation

Case management (small) company of the year

Winner: StanleySmith Case Management Finalists: Emma Way Maia Rehabilitation

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This category, open to case management companies with fewer than 12 case managers, was won by StanleySmith Case Management.

The team was praised for its “effective solutions” in supporting clients and staff alike, particularly its focus on outcome measures and new tools being trialled internally to showcase the effectiveness of work with clients.

One testimonial described StanleySmith as being “reactive to a crisis, providing a measured and practical response…they are equally proactive in planning for future support and providing progressive solutions”.

The judges praised all three finalists as being “exemplary”, with their size enabling them to deliver a flexible, approachable and friendly service.

Through its rehabilitation-focused project, the partnership between Proclaim Care and Hudgell Solicitors stood out with its quick response times, shared approach in addressing financial barriers, resourcefulness in using free services and scaling their collaborative approach to more than 50 clients and families.

One testimonial pointed to the team’s “willingness to find solutions in the absence of funding, alongside the incredible care and commitment shown to a vulnerable group of clients”.

All three finalists demonstrated “outstanding teamwork”, the judges said, praising all three projects for their work in supporting clients.

C A S E M A N AG E M E N T

Clinical case manager of the year Winner: Katie Gardiner, Proclaim Care Finalists: Chris Mayall, Innovate Holly Luxton, Enable Therapy Services

Case management supporter (internal) of the year Winner: Nicola Weller, Circle Case Management Finalists: Natalie Briscoe, Unite Professionals Phil Daffern, Enable Therapy Services Marketing and events manager Nicola won the award in recognition of her “fresh and creative approach” in using technology to create short videos to communicate with clients, as well as for marketing purposes in supporting clients’ vocational progress.

She was described as handling situations “very sympathetically and sensitively, using a very person-centred approach”.

All of the finalists were commended for their support of case managers and organisations, which underpins the work they are able to do with clients.

Katie was the unanimous choice of the judges as the winner of clinical case manager of the year, pointing to her “effective and efficient use of technology” as playing an important role in building strong therapeutic relationships with clients overseas, adding an additional level of support.

She was described as “an excellent case manager who has taken a firm control…ensuring that patients receive much-needed rehabilitation”.

All three finalists won praise for their “remarkable efforts” in supporting injured clients to return to a productive life.

With a theme of Overcoming challenges in an ever-evolving world - chosen to recognise the turbulent times in which we continue to live and work - it marked the first-in person CMSUK Awards since before the COVID-19 pandemic

Catastrophic clinical case manager of the year

Rehabilitation innovation of the year

Winner: Abbie Udall, Abbie Udall Associates Finalists: Kara Cronin-Brown, Unite Professionals, Suzanne Dickinson, ILS

Winner: Energise Health Finalists: Corporé and Reach STEPS Rehabilitation

Case manager Abbie Udall was named winner in recognition of her “true collaboration” with her clients, working towards goals in a manner that reflected the importance of the collaborative process with the treating team.

In testimonials, Abbie was described as “able to develop great relationships and is particularly approachable and compassionate when dealing with difficult and distressing situations”.

The judges also praised the finalists for their “exemplary” work in what had been a highly competitive field, with all three showing “tenacity and creativity in helping navigate their clients through complex and challenging situations”.

Energise Health was named as winner of rehabilitation innovation of the year in recognition of its successful launch of an interactive six-week educational course for adults with injuries and long-term conditions to support their rehabilitation journey.

It was hailed as being a “user friendly, easily accessible, cost effective way of empowering participants to self-manage their situation or condition by providing effective and practical tools and strategies”.

The finalists all won praise for their innovative approach and ability to evidence positive outcomes for their client group.

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SPONSORED

T h e Fa t i g u e Management Journal supporting survivors through the effects of brain injury N a t a l i e M a c ke n z i e , director of BIS Services, has created a journal to help manage, understand and deal with the effects of fatigue as a r e s u l t o f b r a i n i n j u r y.

Here, she explains why - and how its impact is being positively felt by survivors Those working in the field of neurorehabilitation, I hope, will all share the understanding of the debilitating effects of fatigue post brain injury. Fatigue exacerbates the other effects of brain injury and can hit at any time, often without warning, and have long lasting effects.

A good night's sleep simply isn’t enough and clients simply do not have enough energy to tackle any of the tasks they need to complete, let alone even contemplate the things they WANT to do, often moved to the bottom of the pile, seen as a luxury.

No matter the severity of the injury, fatigue after ABI is nothing like any of us will have experienced before. The closest I think I have come myself is that post-newborn sleep deprived madness, where little makes sense, and decisions really shouldn’t be made!

For our clients, it is all encompassing and can come and sideswipe from nowhere. Even for the most educated and insightful. I’ve lost count of how many times it's been termed the “descending fog” to me. The complication of

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course in brain injury is the challenge of lack of insight and awareness, often leading to a boom or bust approach, a push back against the therapy team who seem to constantly bring up this issue of tiredness (this being the client perspective of course), and the apparent lack of motivation and initiation.

All too often though, fatigue management is overlooked, or at times, seen as a reason to cease input to allow ‘rest’ without attempts at an actual fatigue management plan.

Over the past few years, I’ve provided more and more tailored individual fatigue management programs, for new and existing clients, and issues around engagement and motivation due to fatigue had been coming up frequently in staff supervisions.

So, we increased internal training, for our rehabilitation assistants and simultaneously, I was being contacted directly from family members and online groups to provide training and education in a variety of formats.

Although I’d always been interested in fatigue in particular, I now had an itch to develop something for those who aren’t able to use our services directly, or those who may fall below the threshold for statutory support but who desperately need help with understanding and managing their fatigue.

When I came across a planner designer who is part of a women in business coaching group that I am part of, I reached out to her to discuss my idea of creating the Fatigue Management Journal. We clicked straight away, as she had a personal friend who had sustained a TBI and she could see for herself the challenges he was facing. She told me what I needed to do, gave me complete free rein on format and design, then she went off and worked her magic in terms of making it into a beautifully designed planner and taught me how to self-publish. It took a lot of edits to get it just right!

The biggest issue I had was making it make sense to a wide audience, with varying severity of brain injury (from mTBI to severe) and cognitive challenges, those with fluctuating fatigue, and individuals who could self-manage and maintain, but also creating a tool that others can use with their support team. I’m pleased to say that since its publication I’ve had a number of case managers, OTs and psychologists use it in their work with their clients, with extremely positive outcomes, and neurologists recommending in outpatient settings. I just love it when I come across another professional who tells me their client has the book!

This journal is designed as a self-management tool (or with support from family or teams) to enable individuals to manage fatigue experience in a controlled and measured manner, allowing self-monitoring skills to be initiated, as well as self-identification of triggers and strategies that can reduce the impact on daily function.

The six-month journal is packed with strategies, reflections and trackers that is completed with the clients' own words and insights. So many times clients will become frustrated that someone is telling them they are making improvements, but they can’t see them, or they simply feel that person is being kind, rather than honest.

There is great benefit to self-completion, even with support, and the fatigue tracker at the back of the book can show clear data of improvements over time. It also helps with the understanding that recovery is never linear, but that trends are generally upwards, over a prolonged period. This is not a six-month quick fix, it is the start of the fatigue management journey. We all know there isn’t a quick fix for anything in neuro-rehabilitation.

In the journal individuals can: > Learn how to identify triggers and vulnerabilities > Implement the strategies of planning, pacing and prioritising > Understand the impact of different environments and activities > Monitor fatigue daily with a scoring scale > Observe patterns of thoughts and mood > Understand their own optimal recharge methods to manage their cognitive battery > Learn to celebrate success > Adjust and predict schedules more effectively > Have an increased understanding of their own needs and symptoms in order to achieve their goals

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Every brain injury is different, every recovery is unique. The journal allows clients that individual journey on their own terms.

There are some strategies that I know work successfully across the board, when they are implemented with guidance and prompts, which is what I provide throughout.

Monitoring the battery We discuss the analogy of a battery discharge post injury, in a similar manner to the Spoonie Theory or the Pomodoro Method, often used in chronic fatigue and host to millions of social media hashtags. I wanted to add a new method in terms of battery management, as this has worked really effectively with a lot of my clients, and whilst the other methods are fantastic for their followers, brain injury really does add some unique challenges and adjustments.

I’m sure you’ve often found yourself seeing the ‘low battery’ alert come up on your mobile phone.

If you don’t plug it in then, you notice that the speed becomes quite sluggish, things take longer to load and systems become a bit glitchy. If you have a more modern phone, you may have a low battery feature that automatically kicks in when it’s needed.

When this happens the background functions close down, and only the really important functions remain, on minimal function. Then you’re on ‘red’, and you know you don’t have long before the battery goes completely. You always think you have a bit longer to finish a message or a call. But you never do, it just shuts down.

No matter how many times it has happened, you always think you can squeeze our more than you actually do.

This is what is happening with fatigue. Before they can get in front of it that’s it, clients are on shutdown and then completely flat!

The journal teaches individuals how to monitor and manage that battery, so that they are less likely to suddenly find themselves depleted entirely, they can predict when the low battery is coming, what depletes them quickly and how to recharge quicker. Metacognitive skills are sprinkled all over the book.

Journaling works to create conscious awareness around patterns, behaviours and thoughts. By being more aware of triggers and patterns of how we cope, we can make moves to adjust and plan with them, rather than against them.

I’ve had many people contact me to simply say that once that reframed the idea of just wanting fatigue to go away, and they learnt to ‘manage’ it, as they would another symptom, that they really started to feel more in control. Acknowledging the permanence of some level of fatigue is a great step for many in their rehabilitation journey.

"Acknowledging the permanence of some level of fatigue is a great step for many in their rehabilitation journey."

Educate to understand

Learning what doesn’t work

There are a number of things to consider when embarking on understanding fatigue, and the first 50 or so pages of the book are all about fatigue education, teaching individuals the causes, examples of co-existing conditions that can impact, the effects of medication and environmental factors and more. I suggest that they take at least four weeks in the beginning to log and learn what their triggers and vulnerabilities are, what the look like, and probably most importantly, what they FEEL like. Those of us experienced in working within the complexities understand, but here the key is to find a balance between educating and overwhelming. It’s not designed to be an encyclopaedia after all.

There are pages at the back of the journal to jot down ideas and thoughts as well to refer back to in daily review. These spaces are also useful for brain dumps at any time of day., as well as a serving as a memory aid.

Being aware of unhelpful responses to situations, or feelings of fatigue takes practice, and we don’t want to dwell too much long term on the negatives. In order to learn what does work, we first need to explore what doesn't I encourage the readers to think of this stage as gaining an understanding as to what maintains the fatigue rather than what reduces it. The comment I hear most often is "I just power on through". It doesn’t work.

Individuals are encouraged to consider these responses that might not be acting in their best interests. Are they becoming short tempered?

Are they withdrawing, cancelling social events?

Are people around you telling them that they are doing things that they don't notice or cannot recognise in the moment? The journal allows this reflection and learning that can be noted, monitored, and most importantly referred back to when things may seem more challenging, due a number of factors.

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Planning, prioritising and pacing form the basis of the planning. However here we take a long period to learn what this looks like and how to anticipate, which is really tricky. I encourage individuals to really pull back and start planning in time blocks, and sticking to them with timers and alerts, only increasing as fatigue improved.

Education around chunking and other strategies is provided, as well as the benefits of much smaller short term attainable goals. We want to encourage task completion, not a sense of failure looking back at what hasn’t been achieved that day.

Prioritisation and family delegation is important in the process, and there are worksheets to enable the reader to take time with their unit to delegate tasks and responsibilities clearly, so that prioritisation can begin.

Planning how to manage the battery in advance is key here, and the period of learning triggers and challenges allows this part of the process to come in to its own. Here we look slightly further ahead to large tasks and can work backwards in a visual manner, which is much easier for our client group.

Individuals can learn, for example, not to plan a dinner out with friends on a Friday evening after a day of attending a heavy medical appointment. They begin to gather information and increase understanding that rest and recharge after the appointment in order to turn up to that event with energy to enjoy and participate.

Readers begin to learn that those types of appointments are cognitively demanding, especially if they are novel or if there is a significant amount of travel. Individuals are prompted to plan accordingly, keeping the Wednesday and Thursday light on activity with low level tasks, so their battery is as optimal as possible for Friday. This tapering, where you pull back where possible on tasks in order to be at

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your best for the big event, will have a positive impact on fatigue scoring and prompts to do this are included in the weekly plan.

It is also important to plan appropriate goals. Ones that are achievable rather than insurmountable. SMART goal planning is an effective means of doing this, and in many ways is a whole new journal in itself.

However, an overview is provided to ensure individuals understand the benefits of such goal planning, and prompts and templates are provided.

Points I am a big fan of this approach, and have used it with many clients, and her it is particularly useful in the early days when

individuals are discovering the activities that use more cognitive energy. There is a page in the journal for tasks and assigned points. Points change as fatigue improves and people become more able to integrate the Ps into routines. It also helps understand the benefits of rest or recharge for winning back points.

Tracking I love a graph. So, I provided space at the back of the journal to track your fatigue. This is a really powerful technique, as it is there clear in black and white how things are progressing over time. I can be easy to become stuck in a pattern of negative thought that nothing is changing.

The only way you can see change sometimes is through tracking.

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"The journal provides 6 months' worth of daily diaries, weekly reviews and weekly planners."

Each day the reader tracks their average daily fatigue score. Patterns begin to emerge and there are the daily and weekly reviews to refer back to, to see why there was a change, and what made that period more fatiguing or more energised.

Sleep hygiene and recharge education to enable the reader to learn about setting down good habits, as well as understanding that rest does not always mean lying in a dark room runs through the journal. Its so important that users can see what works for them, and that what works for one person might not for them, again the individual nature of the journal is paramount. I’ve included some mindful colouring each month as well, to encourage such practice. Some clients involved their children or spouses here, which is a wonderful collaboration, and a perfect reminder of their support network on those tougher days.

The journal provides 6 months' worth of daily diaries, weekly reviews and weekly planners.

It’s a big book but it means that there can be consistency, there’s less likelihood of it going missing under a pile and there is a good amount of data available to the user.

Each week has a motivation quote and the reflective practice becomes one of the most important elements. A benefit of self-publishing too is that changes can be made, and new editions created based on the readers needs and feedback. When purchased there is a link to an audio version for those who struggle with large amounts of text. I’m in the process of creating a version for children, which will be full of fun and engaging activities to allow the whole family to be involved!

It has been a privilege to provide the resource and hear about the impact it is having on individuals living with the challenges of brain injury fatigue, any progress to me, no matter how small is huge progress.

The journal is available to buy directly from Natalie or on Amazon: www.amazon.co.uk/dp/B09B3LS6Z6

"Sleep hygiene and recharge education to enable the reader to learn about setting down good habits, as well as understanding that rest does not always mean lying in a dark room runs through the journal."

Images and Journal text © Natalie Mackenzie

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Having been delivering life-changing neuro-rehabilitation to clients nationally fo r a l m o s t 2 0 ye a r s , Neural Pathways is now adding a dedicated service for amputees.

Increasing provision for amputees - how Neural Pathways is bringing new options to rehab NR Times finds out more about the new clinic, which brings much-needed prosthetics provision, and how the Gateshead centre’s expert team are already helping amputees to achieve significant progress in their recovery Having built a reputation as a leading name nationally in neuro-rehabilitation, Neural Pathways, part of Active Care Group, is now adding even further to its specialist offering through the launch of a new service for amputees.

The business is building on its range of therapeutic services with the launch of a satellite clinic to bring dedicated and bespoke support for new and existing clients who have prosthetics.

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Neural Pathways will host a monthly clinic at its Gateshead base, creating the only specialist private rehabilitation site north of Sheffield to offer this much-needed service.

It will also bring a closer geographical option for clients from Scotland, with the country currently having no private amputee provision.

A dedicated physiotherapist and occupational therapist will work with Neural Pathways’ growing client base of amputees.

The move into a specialist amputee service is the latest expansion from Neural Pathways, which was established in 2003 as a two-man business and has now grown into a leading name nationally in neurorehab, supporting survivors of brain injury,

spinal cord injury, stroke, and those living with neurodegenerative conditions.

Its investment in cutting-edge technology also extends into its amputee service with the addition of a C-Mill treadmill, a sector-leading piece of equipment designed to tackle balance and gait deficits through simulating everyday situations using augmented and virtual reality with the benefit of a fall safety and bodyweight support system.

“We do have some clients, and have had over the years, who are amputees, as often with a traumatic amputation comes a brain injury. But we would have to take them to Sheffield (for their prosthetic) which is a long way from the North East,” says Kirstie Corfield, clinical lead at Neural Pathways.

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“Previously there was no choice but to go there - but now, with the satellite clinic, we have a ‘one stop shop’ service where the client can not only see a physiotherapist and an occupational therapist, but can have their prosthetic reviewed and altered.

“After injury, we can get our clients back on their feet, integrating into the community, and we are re-enabling those clients to live a meaningful life through a mixture of physiotherapy and occupational therapy, which go hand in hand, as well as making sure their prosthetic works; a seamless service for the client.”

Claire Marley, business director of Neural Pathways, adds: “When it was suggested that we have a satellite clinic here, our clients were over the moon, because they don’t have to spend all that time and effort on a two or three-hour journey.

“We now see the potential for many more clients to come here, rather than going further afield, which is a really positive development for them.”

Since the satellite clinic began in August, already the demand is being seen, with predictions that will continue to grow significantly over the months ahead.

And with the extensive reputation of Neural Pathways for neuro-rehab, combined with the expertise of its 12-strong therapy team, the service has got off to a strong start.

“Our team have all got a background in polytrauma and neurological rehabilitation so we’ve got the expertise. And our expertise in our fields is all pooling together through this service,” says Kirstie.

“We've all got a background in working in this kind of trauma and neurology.

“There are a lot of the same underpinning

“We've all got a background in working in this kind of trauma and neurology.”

principles within amputee rehabilitation and neurological rehabilitation; based on the fallback principle of normal movement. So, looking at whether your client is moving normally and how do you fix that, it's not a million miles away from brain injury rehabilitation, because it is about re-education of normal movement, and trying to get the best out of your clients that you can so they've reached their maximum functional and social and emotional potential.”

Through Neural Pathways’ range of cutting-edge equipment, its options for rehab for amputees are widened even further.

In addition to its specialist gym, the C-Mill treadmill is already delivering positive results in supporting the rehabilitation of its amputee clients.

“It’s a very good bit of equipment for using in gait re-education, giving very good visual feedback on what someone’s gait pattern, their step length. It also and their balance; it also records all the client’s progress so you can track it exactly,” says Kirstie.

“We start from a very early stage with our amputees, to realign their gait.

We’re also working with Summit Medical to look at how we engage in research and development to further improve our service.

“We also have a well-equipped gym, encompassing some robotic and electrical stimulation equipment, we’ve got the toolbox from which we can pick the relevant equipment to help our clients: an area we are looking to grow even further in the future.”

“We now see the potential for many more clients to come here, rather than going further afield, which is a really positive development for them.”

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PA R K I N S O N ' S

The Brain Bank helping to change the future for Parkinson’s patients As the only Brain Bank in the world dedicated to the study of Parkinson’s, the team at Imperial College London continue to make advances which will break crucial new ground in identifying the neurodegenerative disease at the earliest possible stage.

The internationally-significant Parkinson’s UK Brain Bank has, since its inception in 2002, led many of the significant advances into how the condition progresses, enabling better understanding of Parkinson’s and the development of key interventions and treatments.

The Brain Bank is home to more than 2,500 donated brains, each of which will play a vital role in advancing the team’s research further - and with it, bringing new prospects for Parkinson’s detection, treatment and care for the future.

In the UK, more than 145,000 people live with Parkinson’s and globally it is the fastestgrowing neurological condition.

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As technology develops and allows more intricate clinical inspection than ever before - with the team making use of cutting-edge new high resolution microscopy - the Brain Bank is adding to the understanding gained from brain tissue by collecting new levels of data from the donor, which can then be linked to pathology. This will give a clearer picture of each individual brain, which will add significantly to the research.

“Ultimately, this is going to help us nail down what the processes are (in the development of Parkinson’s), so we can get it before it appears,” says Professor Steve Gentleman, professor of neuropathology and director of the Parkinson's UK Brain Bank at Imperial.

“Pharma are going to have to come up with a drug that stops progression - but we want to be able to treat people before they are symptomatic.”

The topic of brain donation has come to the fore recently with documentaries charting the personal stories of Jeremy Paxman, who lives with Parkinson’s, and England Rugby World Cup winner Steve Thompson, who has earlyonset dementia. Prof Gentleman himself featured in Thompson’s documentary, when the rugby legend visited the brain bank.

“I want to demystify this and show people why we do it,” he says.

“It could be seen as a bit gory and a bit strange, but we are actually doing it for a very good reason. I think public education around why we're here is absolutely vital.”

Dr George Gveric, manager of the tissue bank, adds: “It's very important that people know about it, because many times when we go to talk to branches of Parkinson's UK, a lot of people have never heard of the Brain Bank and never heard of the possibility that they can donate their brain.

“And now we're expanding into the donation of data, this will make a big difference and is really important in terms of Parkinson's research.”

PA R K I N S O N ' S

The pioneering research Through the work of the Parkinson’s UK Brain Bank, hope is being given to people who may be diagnosed with the neurodegenerative condition in future years.

For the past 20 years, research has developed which is helping to shed new light on the condition which affects growing numbers of people in the UK and worldwide.

“Human tissue is the ultimate resource to try and find out what's going on in any given condition. Parkinson's disease originally was diagnosed by looking at the brain post mortem, but post mortems don't happen routinely anymore. Diagnosis is much more of a clinical entity nowadays,” explains Prof Gentleman.

“In the previous century, that was essentially down to having a look at a few slides in one area of the brain, the substantia nigra, seeing the Lewy bodies as a structural stain, and making the diagnosis. Then in the late 90s, alpha synuclein was identified.

“In one family, there was a genetic form of Alzheimer's disease and the mutation was found. And then things exploded, because as soon as you have a gene product protein that has been identified as important, you can make an antibody against it.

“Then you go back to the tissue and look to see where this protein is, and that's where we had this huge explosion of understanding. The pathology spreads through the brain in a fairly stereotypical way which corresponds with the emergence of the disease, how the disease progresses, how different things appear at different times.”

“Human tissue is the ultimate resource to try and find out what's going on in any given condition.

Parkinson's disease originally was diagnosed by looking at the brain post mortem, but post mortems don't happen routinely anymore. Diagnosis is much more of a clinical entity nowadays,”

The team’s understanding continues to advance, particularly through the introduction of new technology - including microscopy which can identify the health of single cells - and through its focus on the data of the individuals whose brain is subject to pathology.

“We have pushed this beyond just collecting tissue from donors, we are now collecting a lot of data from them regarding their mental capabilities and cognition, which will create a huge amount of data which will be available to researchers,” says Dr Gveric.

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PA R K I N S O N ' S

“Ultimately, we will link this data to pathology when we receive the tissue, which will make the pathology much more valuable, because you will have different clinical forms of Parkinson's, represented through different pathological features of Parkinson’s."

“One of my main interests is relating the pathology I see in a post mortem to what was happening in life in those individual patients,” says Prof Gentleman.

“A post mortem brain is only as useful for research as the clinical information that goes with it. This allows us to do is look at a large number of individuals, and a large number of different pathologies, and how we can relate it to the clinical evidence.”

The capability and experience of the brain bank team means it is helping to make big advances in diagnostic work around Parkinson’s.

“We can detect Parkinson's much easier than any other clinical or imaging method that's available,” says Dr Gveric.

“We often see cases which are not exactly misdiagnosed, but probably under-diagnosed, because Parkinson's is a condition that mainly affects older people and comes with many other conditions. Therefore, this can muddle the clinical picture, it makes the work of clinicians much harder. We see that when we're going through the medical records.

“That’s one important aspect of doing this sort of work, to provide feedback to clinicians, as well as to improve imaging techniques where we can.”

“It is helping the clinicians, particularly when they have what they might classify as an ‘atypical Parkinson's disease’,” says Prof Gentleman.

“They know it's not quite what they were expecting from what they've seen in their general practice.

We can feed back to them and usually point out that you are absolutely right, this was atypical, this may have been one of the differential diagnoses.

There are at least three of these, and some even rarer ones.”

The Brain Bank’s role in global research As the only Brain Bank of its kind in the world, the expertise of the Parkinson’s UK Brain Bank is in demand from many other research teams working in this space, and its work helps to inform the progress they are making.

Research teams around the world are continually in touch with the Brain Bank to gain and share vital new insight into the advances being made at the unique centre, which are helping to drive forward advances globally.

“Our place in this research world is really important,” says Dr Gveric.

“There are very few groups in the world who haven't been in contact already with us.

Researchers use our tissue when trying to move into some other avenues, and to validate their results, to work out what's really relevant for someone with Parkinson's.

“We play an important background role in this area. People might come to us either at the beginning of their project, to essentially get some ideas of what might be relevant for someone with Parkinson’s, or at the end of the project, to validate the results in a human system, as opposed to animal models or just cells.”

Prof Gentleman continues: “Some of my PhD students have been working on making brain tissue transparent, and allowing us to look at it in more detail in 3D. That particular paper was published a couple of years ago and has provoked an awful lot of interest from people around the world wanting to know how to do it.”

“So there are things we can develop research wise in the tissue bank, which will help other research groups set up their own research questions, because we've proved it's possible to do certain things like we do.”

The donation of brains and importance of awareness Through the generous donation of brains, researchers can help to make the breakthroughs that will shape the future.

To date, more than 1,500 have been collected by the team.

The brains of both people with Parkinson’s and those without the disease - which are used as healthy controls - are vital to the advancement of knowledge, and can be collected from any hospital in the UK and safely transported to London.

"When a donor has passed away, it’s often a family member or a health professional who will get in touch with us very quickly,” says Prof Gentleman.

“We will then arrange the removal of the brain at a hospital somewhere in the country, whichever is the most local and available.

The brain will either be couriered to us or

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collected by a technician and brought back to the facility at Hammersmith Hospital. It’s essential to do this within 48 hours to preserve the structural integrity of the brain.“ "We usually receive a sample of the donor’s cerebrospinal fluid as well – this is enormously helpful in terms of biomarker research.”

"Once the donations have arrived at the Brain Bank, we will preserve and characterise the tissue and work out what exactly went on in the brain of that individual. All of this information goes out with the tissue to research labs around the world.”

Donors consent to giving full access to all their hospital and GP notes, to enable researchers to build a complete picture of their health.

Families have the option to learn more about the brain of their loved one and the condition they lived with, but that is an entirely personal choice.

“Sometimes I talk to the families about what we found, which can help to draw a line under it for them. Some have residual worries and it can help to reassure them there is absolutely nothing else they could have done, and I think it can help to give a little bit of closure,” says Prof Gentleman.

“Others don’t want to hear anything from us, they have their closure, and that’s fine.”

The growth in awareness around the donation of brains to neurological research is having positive effects on the Brain Bank, with more people realising the options available to them and choosing to get involved.

“Back in 2009, we had a really huge PR campaign, and I think we went from something like 40 requests to register on the donor scheme to about 4,000 over the course of four to six weeks,” says Dr Gveric.

“But apart from that, what came out of it was that we were recognised as The Brain Bank and people were coming to us to ask to be part of this effort. We collected a lot of people with Parkinson's and relevant other conditions, but we also sent people to other Brain Banks, so they they got more donors themselves. That is very important.”

The focus on celebrities and sportspeople living with neurodegenerative disease is also highly significant in helping to keep donations at the front of people’s mind.

“Celebrities play a big role in terms of recognition. Brain banking is something that's rather obscure and mostly in the background, and therefore it's very important that people know about it,” says Dr Gveric.

“I think public education is absolutely vital in demystifying this,” says Prof Gentleman.

“Broadening the interest and education is really central to everything we do and in showing people what we do and why we do it.”

Rebuilding lives Everyone Matters Everyone Works Together Everyone Makes a Difference

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Contact us to find out more Tel: 01372 84 1111 Email: neurorehab@qef.org.uk Web: www.qef.org.uk/CRC_professionals

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‘ We’ve s e e n t h e l a c k of support first-hand t h a t ’s w h y A f t e r Matters exists’ 64

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W h e n M a t t h ew H ayd e n a n d A i d a n Le e s s u s t a i n e d b ra i n i n j u r y through violent attacks, their lives - and those of their families c h a n g e d b e y o n d r e c o g n i t i o n . Ye t w i t h a n a b s e n c e o f s u p p o r t a f t e r their return home, their battle to rebuild their lives was made more difficult.

Here, their mothers Maxine Hayden and Louise Bird reveal the reality of the situation they faced, how peer support was vital, and why the creation of After Matters - a specialist charity to support 16-to-25 year old brain injury survivors and their families - will help others escape the loneliness and helplessness felt by so many after brain injury “The care we had in hospital was absolutely fantastic. But then we were discharged home to nothing. And that’s when the reality of brain injury really hit.”

The story is all too familiar to survivors of brain injury and their families, and the impact of the lack of support in the community is profound.

Too often, families reveal their struggles to cope, the cascades of emotion, the loneliness and isolation - but in the absence of any tailored support post-discharge from hospital, these problems can escalate into a huge additional burden for survivors and their loved ones to carry, as they try to move on with their lives.

For Maxine Hayden and Louise Bird, their experience was the same as that of countless others - but by discovering the reality that confronts so many families came their inspiration to make change.

Life-changing traumatic injury Maxine and Louise met in 2018 when their sons - 17-year-old Matthew Hayden and Aidan Lees, 18 - experienced separate violent assaults and were in neighbouring beds in Salford Royal Hospital’s intensive care as they battled for survival after brain injury.

Matthew and a friend had been viciously assaulted in an unprovoked attack by a gang of youths, leaving Matthew needing emergency life-saving surgery and with a significant traumatic brain injury.

In a violent attack by a then-friend, Aidan - who had only recently become old enough to visit the pub - had his skull shattered by a pool cue while enjoying a night out, which was embedded two centimetres inside his brain. He was left paralysed down his left side.

While happily - and miraculously - both Matthew and Aidan survived, their stay in hospital and hugely positive experience of the support of medics sadly was not a pre-cursor of things to come.

“The hospital were brilliant, absolutely amazing.

They saved our boys’ lives. The team at Salford Royal were first class. But then we went home

to nothing. Absolutely nothing,” reveals Maxine.

“We were probably a bit naive because we thought we’d get our boys back, we’d go back to our lives. But you quickly realise that isn’t going to be the case.”

“We were given a hospital discharge pack with some information in, but that was it,” continues Louise.

“Nobody came. Nobody checked to see how we were getting on. Nobody said ‘Do this, do that’. And it’s at that point you realise you’re all on your own.”

Brain injur y - the ongoing impact As young men in the prime of their lives, the impact on both Matthew and Aidan has been seismic.

Matthew, who turned 18 shortly after being discharged from hospital, had a commercial apprenticeship at a local engineering company but earlier in the day that he was attacked, he had just been awarded a scholarship to play rugby in America. Rugby was his passion and his dream had come true - before his life was changed forever hours later.

As a result of brain injury, he now lives with ongoing fatigue, insomnia, cognitive issues, as well as PTSD from the horror of what happened to him.

Aidan, who had also secured an apprenticeship, was left with left-side paralysis from his attack and needed extensive physiotherapy to regain the ability to walk.

Their injury at such a formative point in their lives added further to the impact of brain injury.

“For Matthew and Aidan, they’d not long left school, they'd just started on the journey of starting their new work, career paths, college, learning to drive. It’s such an important time in young people’s lives, starting the next chapter and getting their independence, and then suddenly it was taken away from both of them,” says Maxine.

“As well as the physical and cognitive effects, their mental health suffers a lot because of this.”

Lack of awareness of brain injury from wider society adds further to the challenges they face.

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“Matthew and Aidan are both what you would class as higher functioning brain injury survivors, because to look at them, you probably wouldn’t realise they had a brain injury,” says Maxine.

Louise added “Aidan’s scars are more visible than Matthew’s, but other than that, you wouldn’t know and that’s when you have to deal with the questions. Why are you so tired?

What’s wrong with you? You look fine, why can’t you do this? Why is this taking you so long?”

Trying to return to the working lives they hoped for has also posed significant challenges.

Maxine says: “We saw that with Matthew trying to go back to work, when he retrurned to his apprenticeship, he did struggle. He had problems with his memory, concentration, he was very fatigued and taking too long and getting things wrong.”

“He never managed to keep all the jobs he tried afterwards because he couldn’t keep up with the workload and was making mistakes under the pressure. It’s been so disappointing how few employers seem to be disability friendly.

“He tried so hard and got up everyday to go into work but then I’d often get phone calls from him during the day where he was breaking down in tears as he was struggling to cope.

He felt isolated and that nobody understood why he was struggling and I would have to collect him to bring him home.

“He also developed anxiety attacks at this point and although we tried to encourage him to keep

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going and keep trying, we came to realise, being under that pressure to keep up and ‘get back to normality’ was actually making him worse.

“He has tried quite a few jobs since then but now he’s found something that really suits him.

The employer is very understanding and carries out extra risk assessments and let Matthew have rest breaks and things like that. They even let him stay overnight in a hotel nearby if he’s very tired. So they’ve been brilliant, but it has been a long journey to get here.”

Aidan had similar struggles in trying to go back to the electrical engineering apprenticeship he had previously started.

“He went back to work part-time and I had meetings with the HR team, saying it’s going to take him a while, and they were understanding.

But because he looked fine, I think a lot of people expected more from him than he was able to give,” says Louise.

“He had terrible OCD after his injury, which was a struggle for him in the workplace and he kept getting into trouble. He ended up quitting and went into some other jobs, but didn’t want to tell them the extent of his injury. Through him being paralysed on his left side, the nerve damage in his brain which works his fine motor skills in his left arm has been badly affected, so he does struggle.

“But now, Aidan has started doing bricklaying with a view to doing construction management.

He’s having to start at rock bottom and work his way up, and has had to adapt his bricklaying

technique to take into account his left arm.

He does it his own way but has just passed his level one with a distinction.”

While Matthew and Aidan have both made progress in their lives and careers - probably exceeding that which their mothers hoped for or expected in the very early days - the lack of any forum for support meant they have had to enter the unknown alone.

Although some support groups did exist, sadly they were not suitable for their needs, says Louise.

“There was one group, which was at 7pm and an hour’s drive there and an hour home, which is a long journey and late meeting for people living with brain injury who struggle with fatigue anyway,” she says.

“And we found that these groups were often mainly older people - our sons were 18 and 17 when they were attacked with their whole lives ahead of them, and were now having to deal with the fact that had been ripped away from them. There was absolutely nothing for that age group.”

Without the provision of any formal support, Matthew and Aidan were able to find some support in each other.

“It has been important, they have spoken to each other about some of their struggles, they’ve got that connection where they understand in ways others don’t,” says Maxine.

“I think if they hadn’t met, they wouldn’t have come across another young brain injury survivor, I don’t think. But so many young people will be in that position, where they don’t have anyone.”

The absence of support for the family Having swapped numbers while in hospital, Maxine and Louise quickly realised that in each other they had found some support.

“We had no idea how valuable it would be when we swapped numbers. We were so focused on Aidan and Matthew in hospital rather than making any sort of friendship or even speaking that much, it just wasn’t on our minds at the time,” says Maxine.

“It didn’t really evolve until probably about three or four weeks after Matthew came home, because once family and friends have visited to welcome you back, that dwindles away and you’re on your own. That’s when it’s the most lonely time as a parent, and also for Aidan and Matthew as survivors. That’s when you realise that this is your life now.

“It’s like a bereavement as you try to come to terms with what’s happened. It is so hard to come to terms with, we didn’t know where to start.”

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“It's only as the weeks start going by and they start presenting with new challenges you realise the reality is very different from what you’d hoped, that it would be back to normal soon.

You think ‘Why are you behaving like that?

Why can’t you remember what you were told two minutes ago?’ You aren’t told to expect anything like this, you just don’t know, and you don’t know who to turn to.”

“But in Louise, I had someone who understood exactly what we were going through. The trauma we’d been through. The impact on Matthew and the change that had made to us as a family. The everyday challenges we faced and the fact we didn’t fully understand the impact of brain injury.”

Louise continues: “No-one tells you what’s normal, what is going to happen, what to expect, you’re just expected to get on with it. Without having Maxine to speak to about these kinds of things, just the little concerns you have, it would have been an even bigger struggle.”

“At first it would just be the odd text, such as to wish Matthew a happy 18th not long after his discharge. But once the reality set in, we started texting each other saying Aidan is struggling with this, and Matthew would be too, and we started helping each other with bits of information we’d found ourselves.

“That was so valuable, especially because there was no-one else who understood exactly what we were going through.”

The significant mental health impact on Maxine and Louise - whose daughters were aged 11 and 12 at that time - also grew over time, again without any support or signposting for help.

“We were struggling mentally with it and accepting what had happened,” says Maxine.

“Our daughters were seeing what had happened to their brothers, and that’s very hard for them to cope with, and again there is no support there to help with that.

“First of all, I think you get shock, then you get anger. There’s so many questions about why it happened, it shouldn’t have happened. And I think that’s when the depression sets in. And that can be hard to get out of.”

“This massive change to your lives, and the lives of Matthew and Aidan and what they should have been looking forward to and achieving, is very hard to take. And I think the fact it was a deliberate, violent act that had caused this impacted very deeply. It was senseless, we struggled to make any sense of what had happened.”

After Matters - turning trauma into a positive legacy Having seen first-hand the absence of support for the 16 to 25-year-old age group, as well as for their families, Maxine and Louise decided to take action themselves.

“It was just through chance really that Louise and I met the way we did and kept in touch.

But through the experience we both shared, we realised that other families must be going through this as well,” says Maxine.

“We wanted to do something to help other people, something constructive, something positive to come out of such a traumatic situation.”

After Matters was created to help address the lack of support for young people and families, with Matthew and Aidan both actively involved as trustees.

Targeted specifically at young people, the charity provides a forum for survivors and their families from across Greater Manchester to meet and share experiences, and its website offers advice and signposting for families unsure where to turn.

Its fundraising will also enable young people to access cutting-edge therapies at BASIC in Salford, which many are sadly excluded from financing themselves due to the cost.

“When you’re at that age, 16 to 25, you want to mix with people in your own age groups and circles - but for young people with brain injury, there was nothing for that transitional age group,” says Louise.

“You're going from childhood to adulthood and something like that happens to you, You do feel that the only person in the world that that's happened to. But when you have the chance to meet other people your age, who are in the same position as you and actually understand what you’re going through, that’s a massive moment.”

Maxine adds: “We’d never exclude anyone based on age, we know how isolated people can feel at any age, but it’s that age group with their unique challenges we are really focused on. I think that’s where support is very badly needed, this age group is vulnerable enough at such a time of change in their lives, even without brain injury being part of the equation.

“I would love them to see Matthew and Aidan and feel a connection and inspiration. Obviously nothing is guaranteed with a brain injury, you

"We’d never exclude anyone based on age, we know how isolated people can feel at any age"

don't know what the outcome is going to be, but I hope it can give young people hope and something to work towards.”

Louise adds: “I think it also shows parents, because our boys are involved in it, how far they've come. And it gives them hope as well. It shows that brain injury isn’t the end.

It’s certainly a rollercoaster of a journey sometimes it’s going right, but sometimes you hit rock bottom - but it shows why you should never give up and never lose hope.”

As After Matters continues to grow, with sessions held at BASIC and growing interaction on social media and through the website, Maxine and Louise are delighted with the response to something their own experience revealed was so badly needed.

“Because of the kind of parents that Louise and I are, we would have done anything to find the help we needed, because we’re determined as mums to get the best for our sons,” says Maxine.

“I’m not sure we ever imagined we’d have to create something ourselves because there was nothing suitable, but I’m really pleased we have.

We don’t want other families to feel alone in the way that we did.”

“We did this to help other people, but by creating After Matters, it has actually ended up helping us to feel better ourselves,” says Louise.

“Both Aidan and Matthew are involved, and I know that helps them, and they are really pleased that the work we are doing is helping other young people and their families.”

Maxine adds: “We want to show people that there is still chance to have a good life after brain injury. It’s just going to be a different life, but you learn to follow a different path, but it can still be a good one and that’s what we want to let our young brain injury survivors know, and hopefully they will see that when they see how far Matthew and Aidan have come.

“Both Matthew and Aidan have had their best year in terms of how far they've come and how they have overcome their struggles. Seeing their confidence grow and their acceptance of their new life has been massive for us as parents too.

“It has now been almost four-and-a-half years since they sustained their brain injuries but this last 12 months seems to have been their best year in terms of their mental health and we have both seen improvements in the boys generally, long after the ‘two year’ window that you often get told will be the best they will get to.

“They do still have their struggles, but we really want other survivors and parents to be aware of that, to let them know there is always hope and improvements and gains can be continued to be achieved, no matter how small, it’s so important people are aware of that.”

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Maximising independence through community re-engagement “Everybody is different and wants to do different things.

At Exemplar Health Care, we want to the people we support to live their lives with the independence that is possible for them - and we’ll do anything we can to enable that.”

Creating opportunities

And when Exemplar Health Care says ‘anything’, pretty much anything is on the table in terms of supporting their residents to experience life outside of their care home and in the local communities they’ve always lived in.

Previously, service users have embarked on social activities ranging from a helicopter ride to a trip to see the Dreamboys - showing the lengths the provider will go to in making their care truly person-centred.

For Sophia Feurtado, service user engagement manager at Exemplar Health Care, feeling part of the local community and having the opportunity to experience life within it, is vital for everyone.

“Being involved in their local community is really important for our residents. It helps

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to empower them. It gives them a more personalised experience, promotes choices and independence. And it helps them to either continue or rediscover things they used to do, or to find new things and make new relationships,” she says.

“It’s so important that people feel empowered, and that because they live in a care home they don't feel cut off.

“We want people to feel like a valued part of our community. So right from the start, when they come to live in our homes, we will have conversations with them about the things that they want to do, about their choices, things that they've done in the past and things they’d like to try. That starts as soon as they’re ready.”

And from those conversations come the opportunities that Exemplar Health Care takes great pride in creating for its residents.

From enabling a man to play in a local football team again - an activity he had done regularly pre-brain injury - to enabling a stroke survivor to regain confidence and independence by volunteering in the local community, community integration forms a central part of what the fast-growing provider’s care homes offer.

“We’ll take it at their pace. We will start to introduce them slowly back into the community, but we also bring people in,” says Sophia.

“It could be that someone isn’t able to go into the community initially, but we can bring organisations or individuals in to work with them, to help re-introduce them into the outside world.

“Nothing is too difficult for us and we’ll always look at the personal choice of the individual.

There might be somebody who has done something in their past, or they've worked in a certain profession in their past, and they've still got that interest or that skill. We would look to see what there is available locally that might help them to relearn those skills.

“An example might be someone who had worked as a gardener. We might look to see if there are any community voluntary groups they could go to, or we could get community volunteers from gardening projects to come in. We could also seek for them to volunteer in a community project or a garden centre.

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“Or it could be that some of our residents want to learn something and we’ll find an opportunity for them in adult education. Some of the people we support have joined education groups alongside everybody else, and our staff will go with them to support them.

“Everything is risk assessed and we like to take positive risks to enable our residents to live the very best lives possible.”

Alongside the fact that everyone’s circumstances are different, their progress can also vary, meaning our care is personalised to them.

“Some people progress quicker than others.

You will get some people who will be able to go off and do things on their own, they might go shopping on their own, for example. Some other residents feel confident getting on the bus or the train and use their money management, because they'll be supported to get to that point,” says Sophia.

“But for those who maybe aren’t at that level of community engagement, we have an initiative within our homes where they can volunteer to do different roles within the home.

That's a safe space for them to learn and to do things, ahead of where volunteering and going into the community is an option for them.

“We will develop any role based on what they want to do. We’ve got people working in a tuck shop, working on reception, working in the laundry, helping in the gardens, a whole host of different things they can do within the community environment of our own care homes.”

Support to achieve ambitions While for some getting back into the community is something they have longed for, for others there can be more hesitation. But for Exemplar Health Care, the support is there at whatever level is needed.

The team use the active support model, where service users are empowered to achieve the task they wish to complete.

“There is a lot of support, to gradually introduce people to things,” says Sophia.

“There is the risk of the fear factor, because with some individuals, when they were doing things out in the community before, they might not have had to live with the conditions that they're living with now. There is the fear of how they will be received, how they will be perceived.

“But we like to show that what might be seen as

a negative can be turned around to a positive, and while people may be fearful, they know the staff are supporting and encouraging them, and that really helps.

“Through active support, we would usually identify a task and then break it down into smaller chunks - so in this situation, you’d perhaps have more input from the staff towards the beginning of the process and at certain other stages. But as the person becomes more confident or more able, then interventions from staff would be less and less.

“We also acknowledge that some people might always need support. We could take the scenario of supporting somebody to go to college. That person might never ever be able to get to college alone, so they will always need the support of staff to go along with them. Our care planning process and high staffing levels enable us to provide this support.”

The approach Exemplar Health Care takes to community engagement is also vital in building relationships with the local area, says Sophia.

“We have seen how positive it is that people in the community get to know our residents and build relationships. It helps to demystify people's perceptions about what life is like in a care home,” she says.

“We want to attract local people from the community to come and support our residents, it's really important. And we want to build the relationships so they stay with us, because a lot of our residents like consistency, so that relationship building is very important, both within and outside the care home setting.”

The importance of community engagement Sophia says there is no greater endorsement of the vital role community reintegration plays than through the endorsement of the people at the centre of everything – the people who are receiving this support.

“I know it’s important because our residents have told me that. Whenever we ask them what they want to do, the highest thing on their priority list is that they want to go out. They want to go and do things that they would do if they were living in their own homes,” she says.

“It’s like myself - the whole me, the whole Sophia, is an extension of all the things that I love to do outside of my home. So knowing my neighbours, being able to wake up and say hello to them, knowing the local shopkeeper, being able to go to my local supermarket, knowing where the parks are; the everyday things.

“It’s getting that fresh air, to feel the sun - or even feel the cold or the rain - on your face, just those things that sometimes you take for granted, and the fact that it builds their confidence so much.”

The personal progress being made is something Sophia is always delighted to see.

“I can see the incremental progress that people have made and are making,” she says.

“This kind of work is not easy to measure, it's more the fact you have to look at the personal stories and the impact it's had on them. We could measure progress in somebody who hasn't been able to get out of their wheelchair for a number of months. But then after certain interventions, they can stand, or they can take their first few steps.

“It’s about the softer measures rather than hard statistics - but they tell their own stories in a way that statistics couldn’t.”

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Case study Case studies are a great way to share the excellent work that happens in our care homes every day, and can help us to raise our profile with potential referrers, individuals and their family members.

“I whip the rod b a c k a n d m a ke sure that no one is behind me. It was quiet for the first 1 5 -2 0 m i n u t e s , t h e n OOMPH… I got it.

It was mint!”

Volunteering with a local community group

Andy Sherratt Andy lives at Scotia Heights care home in Stoke on Trent. He moved there in 2014 following a stroke in 2009. The stroke left Andy with difficulties in processing and comprehending information, and weakness to the left side of his body. Andy also lives with schizophrenia and in the past has experienced episodes of psychosis and disorientation.

When he first arrived at the home, he would often attempt to abscond. However, with the support of the Scotia Heights team, his Schizophrenia is well controlled and he no longer attempts to abscond.

Despite his challenges, Andy is independent in most aspects of his day to day living and continues to live a fulfilled life, taking part in his favourite hobbies and volunteering with a local charity group.

With support from the Care Team and input from the Activities Team at Scotia Heights, Andy enjoys a good quality life that’s full of the things he loves.

Andy has always been a private person, enjoying his own company and often spending time on his PlayStation.

Our high staffing levels enable Andy to

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progress at his own pace and build trust with the Care Team.

Meaningful activities Since the home has welcomed a Physiotherapist and introduced a focus on community engagement, Andy enjoys taking part in a range of activities. He’s keen to get involved in anything and everything that’s happening around the home.

The team encourages him to develop his life skills and build his independence. His care package provides one to one staffing for Andy. The staff member is there to enable Andy to engage in meaningful activities both inside and outside of the home.

Andy has recently started fishing, a hobby that he enjoyed when he was younger.

He previously did rod fishing, but due to his left sided weakness, he has had to adapt, taking up pole fishing instead. He was thrilled to have caught five fish on his first time back.

A keen footballer, Andy also attends walking football sessions at the local Dimensions Leisure Centre. He loves having a kick around with friends and keeping active to maintain muscle function in his legs.

A few months ago, Andy started volunteering at Green Door at West Port Lake. Green Door is a community group that offers outdoor activities for local people, especially those who are older or disabled.

Here, Andy works at the bike hire centre once a week, on a Thursday between 10.00 and 13.00. He interacts with customers, moves the bikes around and has learnt how to fit a bicycle bell, which he’s very proud of.

Andy loves volunteering and treats it like a real job. Since starting a few months ago, his confidence has grown and he’s learned new skills – he loves interacting with people and getting out in the local community.

In future, Andy would like to increase his hours at Green Door, and his long-term goal is to try to get a paid job.

In-house physiotherapy sessions To support his hobbies and volunteering, the Physiotherapist has recently purchased functional electronic stimulation equipment to support Andy to regain some function in his arm.

We hope this will enable Andy to do even more things for himself and make it easier for him to take part in a wider range of activities.

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John lives at Dearnevale care home in Grimethorpe near Barnsley. In 2018, John experienced a thin acute subdural hematoma and contusion following a fall. This led to an acquired brain injury, dysphasia, poor shortterm memory, epilepsy, poor vision and Bell’s palsy. With support from the team at Dearnevale, John’s health and wellbeing has improved significantly. He’s now able to mobilise independently, has had his PEG feeding tube removed, and enjoys living a fulfilled life.

John Taylor Following John’s injury, he’s experienced reduced mobility, poor vision, difficulties with communication and swallowing, and he developed behaviours of concern.

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.

With 1:1 support from the Care Team and input from the Life Skills Team at Dearnevale, John has made great progress in his recovery and he now enjoys a good quality life.

Behaviours of concern After his injury, John started to display behaviours of concern.

The trained team at Dearnevale has helped him to develop strategies to recognise when he’s experiencing periods of agitation that could escalate to behaviours of concern.

Our high staffing levels enable John to progress at his own pace and build trust with the Care Team.

He’s now able to vocalise to staff when he’s feeling agitated or the sensation that he’s becoming agitated. He recognises when he’s about to experience seizure activity and will seek assistance and take time out to enable

these symptoms to be managed before escalation.

During his time at Dearnevale, the number and duration of incidents of behaviours of concern have reduced dramatically.

Rebuilding mobility At Dearnevale, the team has supported John to rebuild his mobility.

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

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’s able to mobilise independently, only requiring verbal prompts when he’s tired.

John 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.

Specialist care from a trained team At Dearnevale, John receives person-centred care to support his complex holistic needs.

John has received input from Dieticians and Speech and Language Therapists (SALT). He stated that he preferred to receive support from Dearnevale colleagues, and since doing so, he’s had his PEG feeding tube removed and he’s able to eat and drink orally.

Developing life skills At Dearnevale, the team has encouraged John to develop his life skills and build his independence.

He enjoys regular sessions with the in-house Life Skills Team at Dearnevale. These sessions focused on improving his independent living skills and social integration.

John has developed his hand and eye coordination 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.

Over the next 12 months, John has expressed that he hopes to continue building his independent living skills.

Hear from John “I’ll tell you the truth, Dearnevale is fantastic.

The people here are always here for me, they’re fantastic. They did this for me and I am gob smacked I have got so far”.

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H. Batey, S. Glen, K. Dawson

FND: Updated research and the optimal rehabilitation pathway Introduction As a neuro-rehabilitation organisation, we are seeing more and more cases of FND being referred to our clinical teams. These referrals are coming to us directly from insurers, lawyers and case managers, as there is a need for a rehabilitative approach to enable progression on the pathway to recovery. FND manifests in both cognitive, psychological and physical presentations, hence the presence of functional deficits, so the holistic approach of a neuro-rehabilitation team is compelling.

From our own reviews, we can see that

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we are making great progress through our interventions, resulting in some outstanding functional outcomes. We are always keen to understand the research and outcomes that contribute to a growing body of evidence for FND, and to establish through case and literature reviews whether a functional approach does indeed give the best possible outcomes for these clients. We thought the outcome of our findings may be of interest to NR Times subscribers, as we will all see more of this client group in need of our particular skills and experience.

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T h e b a c kg r o u n d , r e s e a r c h a n d clinical evidence The study of what we now call Functional Neurological Disorder may date back millennia.

In fact, its roots stem from ancient Egypt, when it was believed that movement of the uterus would lead to hysterical disorders, while the ancient Greeks were moved to name the condition for the Greek word for the womb, hustera. Scholarly thinking didn’t change for some time, with the father of modern medicine also holding the belief that hysteria was a uterine disorder, but one that originated from the lack of sexual intercourse which caused the release of toxins into the body. Thankfully, medical thinking has leapt ahead and men may no longer fall upon the weak lines of Hippocrates to persuade their potential suitors, but the traumatic hysteria label persisted well into the 20th century, perpetuated by some of the great names in the annals of neurology, such as Charcot and Freud.

Even in relatively contemporaneous times, FND has had a difficult road to proper recognition. The labels changed but diagnoses of conversion disorder followed almost identical criteria to those of hysteria, further justifying the characterisation of a preponderance of symptoms as psychosomatic, or patients as simply malingering, not indifferent to the way that many were treated when presenting with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), or ‘Yuppie Flu’ to give it its proper pejorative.

In recent decades there has been some serious investment and research into FND and it has become a much more widely recognised and accepted disorder within the neuropsychology community. Whilst it is still listed (perhaps

Diagnosis was previously one of exclusion, which left questions looking for answers, some of which could be provided by psychoanalysis.

The study of what we now call Functional Neurological Disorder may date back millennia. without merit) as a rare disease, staggeringly, in 2020 the Department of Neuropsychology at NHS Grampian reported that approximately one third of all patients attending their general neurology clinic would go on to receive a diagnosis of FND. What remains rare is that FND is one of a small number of disorders that is categorised in the International Classification of Diseases (ICD-11) as both a psychological disorder and a neurological disorder. We feel that this is of benefit to both clients with FND and to the clinicians that treat it, as it aids multi-disciplinary team collaboration across neurology and psychiatry specialisms, and specialist clinics that exemplify this collaborative approach are growing in number across the UK. Whilst Prof. Selma Aybek and Dr David L. Perez note that duality of classification “creates coding problems between mental health and neurological disorders that affect which clinical services will be reimbursed, or by which expert

patients should be evaluated in medico-legal cases” in their excellent review, ‘Diagnosis and management of functional neurological disorder’, this issue may be of less relevance in jurisdictions that do not reference the DSM-5 model. Besides this, the increase in specialist FND services may render the issue of which service to reimburse a moot one.

FND is in a category of functional disorders that primarily comes from within the functioning of the nervous system, as opposed to any identifiable pathophysiological disease, which is something it shares with both irritable bowel syndrome and fibromyalgia. Dr Bichard of The Walton Centre describes it as “a problem with the functioning of the nervous system in a structurally normal brain”. Prof. Jon Stone et al use the relatable analogy, in their highly recommended paper ‘Recognising and explaining functional neurological disorder’, of calling it a “Software rather than a hardware problem”.

Diagnosis was previously one of exclusion, which left questions looking for answers, some of which could be provided by psychoanalysis.

Relatively recent developments that have increased our understanding of FND have meant that diagnosis is now arrived at from positive, rule-in signs that can be determined by tests performed under the direct supervision of a neurologist or a neuropsychiatrist, with the presence of psychological stressors being recorded as an adjunct to any of the accepted criteria. All of the accepted positive motor signs for FND are neatly presented in tabular form in the Aybek and Perez review. Prof. Stone (Stone et al, 2009) also highlight the low misdiagnosis rate of less than 5%, cautioning against fear of misdiagnosis.

S o , w h o c a n g e t F N D ? ( S p o i l e r a l e r t ! I t ’s a n y o n e ! ) You may be surprised that anyone can be vulnerable to FND, and while there are a number of factors that are known to increase risk, these are neither definitive nor exclusive and there is still no consensus on precisely what causes the disorder to manifest. However, when considering a patient with FND It’s useful to evaluate them against the 3Ps of the cognitive behavioural model.

Predisposing (factors): illness; personality traits; life events; stressors Precipitating (triggers): injury; traumatic event (either physical or psychological) Perpetuating (symptoms): what keeps the symptoms alive? Fatigue, chronic pain, illness beliefs, co-morbidities (anxiety/depression) social stressors and also being within the compensation process.

More commonly, people diagnosed with FND will relate to a number of the above.

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What are the signs and symptoms we need to be looking for?

Since classification is clearer and patients can now gain an unequivocal FND diagnosis, how does this look in practical terms?

As we have seen across Reach, FND clients can experience a wide range and combination of symptoms that are physical, sensory and/ or cognitive. This is where the rehab approach needs to be focussed and the assessment needs to be very specific to gain an accurate baseline.

TYPICAL SYMPTOMS There are a range of typical signs and symptoms within the disorder, the more common ones come under three clinical headings.

Motor Dysfunction > Functional limb weakness and paralysis. > Functional movement disorders including tremor, spasms and jerky movements – all leading to problems with walking. > Functional speech symptoms including slurred or stuttering speech in addition to whispering speech (dysphonia).

SENSORY DYSFUNCTION > Functional sensory disturbance which includes altered touch sensation including numbness, tingling or pain in the face, torso or limbs, (this often occurs unilaterally, which has been the case with several Reach FND patients). > Functional visual disturbances, including loss of vision or double vision.

"We are gaining more and more clinical experience of this disorder, with a number of our clinicians having worked with FND patients on both a community basis and on an inpatient basis within the NHS."

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COGNITIVE SYMPTOMS > Dissociative (non-epileptic) seizures presenting as blackouts and faints. > Fatigue – cognitive and physical. > Sleep problems. > Anxiety. > Memory problems. > Low mood. > Problems with planning/organising.

It is important to remember that these symptoms are quite real and often very disabling, and can co-exist alongside a diagnosable neurological condition (in around 10 – 20% of cases).

SOME KEY POINTS: > Neurological disease is one of the main risk factors for FND > About one sixth of neurological outpatient diagnoses are for FND, this is second only to headache and migraine. > FND is one of the commonest diagnoses in neurology. (Stone et al) Amongst other concerns for clients are that functional problems often result in issues within work settings, and they can also experience difficulties in social settings and encounter problems in their relationships.

As we have seen within our clinical practice at Reach, symptoms can vary and fluctuate, and we have frequently observed clients in remission, followed by sudden relapse.

It is therefore prudent to identify the ongoing difficulties for FND patients, and to establish an appropriate treatment pathway, whilst carefully managing their expectations to ensure that they are able to achieve realistic goals.

Best practice – the rehabilitation pathway We do not make the claim that Reach are FND experts in a medical, or a medico-legal sense. However, we are gaining more and more clinical experience of this disorder, with a number of our clinicians having worked with FND patients on both a community basis and on an inpatient basis within the NHS. We are drawing from our clinical experience and the available research evidence to provide the high-quality rehabilitation service these clients need and deserve. I’m keen to share our practical knowledge and experience, so that we may contribute in any way we can to advance our clinical practice and support other providers within this sector.

As we have discussed, FND manifests itself in a multitude of ways and symptoms can vary in severity. The capricious nature of the disorder often makes it very difficult for clients to plan and manage their day-to-day lives, which can be very disabling, but also where our rehabilitation treatment pathways can be of most benefit. It is well noted that neuro-occupational therapists are a good fit in the treatment toolkit of a multi-disciplinary team co-ordinating the complex needs of those with FND. Within all of the literature reviewed, it states that “communication is key”. Presenting a positive diagnosis is a crucial part of the treatment, whilst not forgetting that it is equally important to supply an explanation of how the diagnosis was made. It was found in a study (Duncan et al, 2011) that proper communication of the diagnosis was followed by cessation of functional seizures in greater than 40% of new-onset patients. This is a staggering percentage.

What is the evidence-based prognosis of this neurological condition?

As one may expect, it is noted that outcomes vary considerably and so confident statements about prognosis are ill advised.

Primarily, clinical outcomes are dependent upon many biopsychosocial factors and it is currently unclear how prognosis varies if a client is afforded optimal care and their pathway takes advantage of some of the newer treatments available. The research in this area is ongoing and we follow progress with interest.

There are however, some trends on outcomes: > Good outcomes are more likely where the patient is younger and/or symptoms are of shorter duration; longer duration of symptoms predicts poorer outcomes > Co-morbid anxiety and depression predict worse outcomes in some studies An important point to note is that, like any other condition, a rehab team can only predict accurate outcomes once rehabilitation sessions have started and even then, you can never be totally confident. It is stated that, even if clinical studies are not totally confident on predicting outcomes, every FND client deserves the opportunity to maximise their functional performance through rehabilitation.

1. Cecilia Tasca et al, Women And Hysteria In The History Of Mental Health’, Clinical Practice & Epidemiology in Mental Health, 7 August 2012, PubMed [Online] https:// www.ncbi.nlm.nih.gov/pmc/articles/PMC3480686/ Accessed 7 July 2022 / 2. Nicholson TRJ, Stone J, Kanaan RAA, Conversion disorder: a problematic diagnosis Journal of Neurology, Neurosurgery & Psychiatry, 2011, BMJ [Online] https://jnnp.bmj.com/content/82/11/1267 Accessed 9 July 2022 / 3. Selma Aybek and David L Perez, Diagnosis and management of functional neurological disorder, 24 January 2022, BMJ [Online] https://doi.org/10.1136/bmj.o64 Accessed 7 July 2022 4. Stone J, Burton C, Carson A. Recognising and explaining functional neurological disorder, BMJ 2020 [Online] https://www.bmj.com/content/371/bmj.m3745 Accessed 9 July 2022 / 5. Stone J, Warlow C, Sharpe M (2010). The symptom of functional weakness: a controlled study of 107 patients. Brain 133: 1537–1551

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He was an inpatient around 15 years ago, which was before we had an in-depth understanding of FND. He presented with a pattern of symptoms that were not in keeping with his brain injury, which resulted in confusion amongst the professionals who lacked the knowledge of, and exposure to FND. The subsequent lack of understanding lead to a breakdown in relationships due to the client feeling that he was not believed. This would not happen today, now that we have clear classification of symptoms.

Subsequently, this patient was given an FND diagnosis once he was seen in the community and he went on to work well with the team of neuro-occupational and physio therapists to achieve his personal and functional goals.

With the continual increase in awareness of FND and with access to clear treatment plans, cases like this will no longer occur.

Key principles of the optimal treatment approach Clinical assessment (subjective and objective) As with all conditions it is import to complete a thorough assessment, being clear and transparent about any observations and ensuring the use of appropriate terminology.

Clearly explain the diagnosis Take time to ensure that the client understands the diagnosis, explore what the diagnosis means to them, and demonstrate how the diagnosis was arrived at.

Set realistic goals Setting goals is important, this enables patients to be at the centre of their treatment, to feel seen and heard, and for them to see the progress that they are making. Goals should be realistic and they should be achievable, in terms of both the ability of the client and the available time for therapeutic treatment.

Grade treatment/activity Treatment should be graded in order that goals can be met. The best approach is to start easy and slowly build complexity, so that achievements are noted and progress is easily measurable.

Regularly communicate progress It is really important to be honest about progress, if goals are not being achieved it might not be the right time for treatment and continuing to strive towards them may put clients under additional pressure.

Educate and empower self-management As with most conditions, empowering patients to understand their own condition and enable them to manage it effectively is paramount, so providing education is vital.

A patient will learn what works and doesn’t work for them, our role is to provide them with the information they will use to develop their management strategies and to supply them with guidance where it is needed. Some examples of self-management strategies include: grounding techniques; breathing exercises; relaxation; physical activity.

Technology can also provide support for a number of patients, for example, the highly recommended MyFND app.

An historic case of misdiagnosis Here we briefly discuss a case of misdiagnosis, selected because it highlights the challenges that arose when there were no rule-in signs for the clarity of diagnosis. This young man was working as a gamekeeper prior to his injury and was living independently. Some of the main features of his case are: > He was a young man (23 years old) > Admitted to hospital with a TBI > Developed a new movement disorder > There was a lack of understanding of FND > Client had a mistrust of professionals > Diagnosed with FND post-discharge

Concluding themes In summary, some of the main take-aways from our clinical work and literature reviews are that: > FND is a common condition and can be hugely disabling > FND is real and should be diagnosed using positive signs > FND is thought to result from a combination of biopsychosocial factors > FND diagnosis should be clearly explained to the client and reinforced by the MDT Recommended themes to treatment Current guidance for the treatment of clients with FND advises practitioners to duly consider the following: > To educate the client and the family/carers > To seek automatic/normal movement strategies and integrate them into function > To avoid compensatory strategies, aids and adaptations where it is safe to do so > To develop self-management strategies including building awareness of triggers It’s important to acknowledge that the body of research is growing, creating an ever-evolving picture, and our team of experienced clinical specialists work closely alongside multidisciplinary teams to ensure that our clients have access to innovative treatments for FND.

6. Stone J, Warlow C, Carson A et al. (2005). Eliot Slater’s myth of the non-existence of hysteria. J R Soc Med 98: 547–548 / 7. Stone J. Functional symptoms in neurology: The bare essentials.

Pract. Neurol. 2009;9:179–189 / 8. Aybek & Perez, Diagnosis and management of functional neurological disorder, BMJ 2022;376:o64 https://www.bmj.com/content/bmj/376/bmj. o64.full.pdf9. Monzoni CM, Duncan R, Grünewald R, et al.: How do neurologists discuss functional symptoms with their patients: a conversation analytic study. J Psychosom Res 2011; 71:377–383 / 10. Gelauff J, Stone J, Edwards M, et al. . The prognosis of functional (psychogenic) motor symptoms: a systematic review. J Neurol Neurosurg Psychiatry 2014; 85:220–6. / 11. Pareés I, Saifee TA, Kassavetis P et al (2012) Believing is perceiving: mismatch between self-report and actigraphy in psychogenic tremor. Brain 135:117–123 / 12. Nicholson C, Edwards MJ, Carson AJ, et al Occupational therapy consensus recommendations for functional neurological disorder Journal of Neurology, Neurosurgery & Psychiatry 2020;91:1037-1045 / 13. Yam, A., Rickards, T., Pawlowski, C. A., Harris, O., Karandikar, N., & Yutsis, M. V. (2015, December 21). Interdisciplinary Rehabilitation Approach for Functional Neurological Symptom (Conversion) Disorder: A Case Study. Rehabilitation Psychology. Advance online publication. http://dx.doi.org/10.1037/rep0000063 / 14. Nielsen, G., Stone, J., Buszewicz, M. et al. Physio4FMD: protocol for a multicentre randomised controlled trial of specialist physiotherapy for functional motor disorder. BMC Neurol 19, 242 (2019). https://doi.org/10.1186/s12883-019-1461-9 / 15. The 75 MyFND mobile application https://myfnd.co.uk/ / 16. Functional Neurological Disorders, NHS, Sheffield: https://www.sth.nhs.uk/services/a-z-of-services?id=115&page=293

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‘We want to deliver those life-changing moments’ Building on its success as an inpatient unit, Peartree House is now a rapidly-growing community care and neuro-rehab provider, supporting people with brain injury and neurological conditions across the country to regain independence and quality of life.

NR Times learns more about its ethos, its focus on supporting people and how its specialism in brain injury care is helping to change lives.

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From meeting a need in the local community for specialist neuro-rehabilitation for adults of all ages has come a thriving specialist care provider delivering at-home support nationally, delivering often life-changing outcomes for clients.

Peartree House opened in 1996 in Southampton to help deliver an appropriate pathway for people with brain injury after being discharged from an acute setting.

Since then, the residential unit - under the leadership of managing director Remi Katsande - has grown to support people from a wide geographical area in their rehabilitation, including re-integration back into independent life.

But its most significant and ongoing expansion has been in its community care, with that part of the business continuing to grow strongly on a national basis, delivering at-home care packages to people with brain injury, neurological conditions and complex needs.

And the support it provides to clients, geared around maximising their independence, can deliver outcomes some thought may never be possible.

Such as for the man who had not been out of his home in 20 years, but now visits his local sea front for an ice cream with the support of his Peartree care team.

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Or for the teenagers who benefit from Peartree’s vocational rehabilitation, to get them back into the workplace or education after brain injury.

“These are really life-changing moments, but what we do is all about promoting independence and promoting recovery,” says Caroline Watts, community services manager at Peartree.

“Every person we work with is so different, so every package of care is so different and so personalised. We build the package with the right staff, the right support plans, the right risk assessments around the person.

It’s totally bespoke and about what is in the best interests of the client - and for us as a team, it’s hugely rewarding.”

"Every person we work with is very different, so every package of care is different and personalised. "

Bespoke support for younger people While clients are of all ages, Peartree’s origins in supporting young people continue to be a particular focus for the provider, with dedicated and bespoke care for that younger age bracket at a premium.

“Provision for younger adults with brain injuries or neuro conditions was a real challenge back when Peartree House opened, but we still hear some of the same things today. There can be a huge age difference in some settings, young people are being put into care homes where there is a very different clientele,” says Caroline, who is from a nursing background and was most recently a matron in a neuro-rehab service before joining Peartree.

“But with our community work, where possible, we want to keep them in their own homes with their parents or families, or get them back to college or work with our vocational rehabilitation.

“We have some really young patients with us at present, who are 18 and 19, and we really place focus on what is happening in their lives, what they will want to achieve. These are young people for whom getting their lives back is very important.

“Through our multi-disciplinary packages which help their recovery after being in hospital, we promote independence and can help them reach that stage where they are just a young person who has friends and goes to college. We can help them find normality again, that is a huge part of what we help with, the integration back into daily life.”

Inpatient neuro-rehab Peartree House was established in 1996 to bring much-needed options to people needing a pathway back into the community and independent living after brain injury.

The 30-bed unit, in Bitterne, has an in-house multi-disciplinary team to deliver the whole spectrum of therapies to clients. Referrals come from across Hampshire,Dorset,Wiltshire and Sussex.

“We have the full MDT on site, so offer that real holistic, integrated approach. Often, providers who offer therapy don't have nursing expertise and inputs, which we do,” says Caroline.

“We have a really good mix of everything we have psychology, speech and language therapists, physiotherapy, Occupational Therapy, as well as really highly skilled rehab assistants.

“For many of our clients, this is the first step on the journey towards getting back into the

community and re-integration. Peartree House is important in enabling early discharge from hospital, but also we have a role to play in terms of supporting early discharge from Peartree into the community.

The flexibility we have here can be really important in the bespoke rehabilitation of each and every individual.”

Peartree House supports people on both rehabilitation and long-term complex care pathways, with dedicated work to enable them to live as independently as possible in the runup to discharge.

“Once they reach a stage where they can move into the community, that is where our community team can come in, if necessary, and I think that’s the beauty of it,” says Caroline.

“We can continue that support in a setting where they are with their families with a therapist they already know, but having the inpatient unit as the backup also provides a safety net, in case we do need it for clients.”

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who in the last six months has left his house for the first time in 20 years to go to the sea front. That is because our team are committed to achieving the best possible quality of life they can.

“Will this man get better in terms of his recovery? Sadly not. But can we still really support their families and give back quality of life and allow them to be a family again, and build trust and give reassurance?

Yes, absolutely.

“And that is the importance of specialist care by specialists.”

The future

The growth of community care Building on the reputation of the Peartree House unit, its community arm, which delivers a wide range of specialist support - from 24-hour live-in care through to a minimum of six hours a day of care, bespoke therapy or both - is gaining a reputation for its specialism in its own right.

“There is a big focus on community care, especially post-COVID with people wanting to stay in their own homes, and the ability to support early discharge from hospital,” says Caroline.

“There has always been a big need for that, but particularly since COVID. I remember that well from working on the acute side, but the need is only increasing. We provide an option for people to come out of hospital and into the community, where they are supported in a way that is very safe and holistic.”

And the MDT expertise which has been present in the inpatient setting also runs through its community care, with the whole range of therapies available to clients.

“We have all of the specialisms in our team, so we don’t need to outsource anything. We even have construction people in our team, in case

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any property adaptations are needed, we can do that too,” says Caroline.

Expanding strongly nationally, the focus of its ongoing recruitment is on adding specialists in neurological care and neuro-rehabilitation to its team.

“Our team is skilled and experienced specifically in brain injury, whether that be challenging behaviour or the medical challenges that come with that. We have a real understanding of this, which is vital,” says Caroline.

“All of our staff our specifically trained and we offer very comprehensive induction and training in brain injury and other neuro conditions, to ensure we have the staff with the right skills and experience to support all of our clients with a range of challenges.

“We are committed to offering really high standards of care and boosting quality of life. Whether that is for those people who are thriving in their recovery, or for those who may not make a full recovery, we will do our utmost to ensure their quality of life.

“There is a gentleman who springs to mind who had a lot of care companies who weren’t specialists in brain injury, and maybe weren’t as understanding of his behaviour and needs,

Going forward, recruitment is a priority as the business continues to grow, adding national resource to its community team, while maintaining the service delivered by Peartree House itself.

“There is absolutely the need for the inpatient unit, we have 30 beds and they are all full, and we are providing a specialist, intensive service to those people,” says Caroline.

“But there is a great demand for communitybased care, so people can stay in their own homes and with their families. We are seeing the community service as the fastest-growing and biggest demand currently, but there's definitely a need for both.

“We are also looking at the possibility of having smaller, independent living flats that are appropriate for some of our clients, for example, some of the younger clients who may want to move out from their parents and experience some independent living, but need to do that in a supportive way.”

But for Peartree, alongside its ongoing growth, the focus will continue to be on achieving the life-changing outcomes for clients.

“We see some people who live in the community, who have lived with brain injury for years and we wish we had been able to support them sooner. The window for effective neuro-rehab is so small, but if you can work with people during that, you can achieve so much in a short space of time,” says Caroline.

“What we do is life-changing, and very rewarding for us as a team. Whether it is getting someone out for the first time in 20 years for an ice cream, or whether it's watching someone take their first steps or be able to sit on the floor and play with their child again, or say their first words or eat their first meal.

“There are all of these things that we take for granted day in, day out, but when we can help our clients achieve this is a massive step in their lives. It’s so rewarding to be part of that.”

NOW RECRUITING Sphere Associate Clinical Psychologists We provide brain health and rehabilitation services, so people can live better lives.

We have experience treating individuals with a wide range of neurological conditions including traumatic brain injury, stroke and brain infections. We also work with individuals who have sustained spinal cord injuries.

Sphere use a hybrid model of evidence based neurological rehabilitation interventions, including face to face, telerehabilitation and use of Virtual Reality tools to ensure clients can practice their rehabilitation a little every day. We also offer clients and their families the opportunity to access rehabilitation services in real life environments.

It is important that the client gets the right treatment, at the right time, from the right person.

We are looking to expand our team who are highly knowledgeable in a number of psychological rehabilitation treatments such as:

• Cognitive Behavioural Therapy (CBT) • Cognitive rehabilitation • Interpersonal Therapy (IPT) • Short Term Psychodynamic Therapy • Trauma Focused Therapy • Eye Movement Desensitisation and Reprocessing (EMDR) • Mentalised Based Therapy • Compassion Focused Therapy

Sphere currently have cases across the UK and we are looking to recruit Associate Clinical Psychologists to support our ever-growing client base.

We are also able to provide clinical supervision for individuals who wish to pursue the QiCN. For further information or you would like to discuss the role, please contact Sphere: info@sphere-rehab.co.uk

Dr Clare West: 07763 561 644

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Learned non-use: addressing the obstacle to rehab Stroke survivor and GripAble ambassador Kate Allatt describes the phenomenon of learned non-use and highlights the importance of raising awareness to prevent the issue, to ensure better rehab outcomes for survivors of stroke, brain injury or other neurological conditions.

Getting back to carrying out everyday activities independently after a stroke or brain injury is a huge victory for survivors, and certainly no mean feat.

Regaining the ability to do small tasks like chopping up vegetables and brushing your hair goes a long way towards rebuilding confidence. But it can be all too easy to lead and overcompensate with the stronger hand or side of the body without the right support and guidance.

I later learned this was called ‘learned non-use’ and was shocked to find the lack of awareness and understanding of the issue amongst stroke survivors of all ages.

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What is learned non-use?

Learned non-use results from neglect of the affected limbs after stroke, and can happen to anyone who has suffered an injury which impairs their movement. For example, it can happen when an arm is immobilised in a cast for a period of time. It can also occur following a brain injury where a person is affected by hemiplegia.

Stroke survivors sometimes become overly dependent on their non-affected hand to complete daily tasks. Learned non-use occurs when this neglect becomes severe, and the brain completely forgets how to use

the affected hand or limb. This can also lead to muscle wastage.

Learned non-use is not necessarily permanent and can be treated via constraint induced movement therapy (CIMT), which is based on the theory that the affected limb may have a potential but unrealised ability to move due to reliance on the unaffected limb.

So, what can stroke survivors do to break this negative learning loop? Effort and commitment are required to prevent learned non-use, as stroke survivors must strive to use their affected side, even if it’s just a little, every single day.

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Is learned non-use known about?

To gauge fellow stroke survivors’ understanding and knowledge of learned non-use, I consulted my online stroke communities. Some of the responses I received included: “My brain doesn’t remind my weaker hand to spring into action, so I rarely use it. I do try every so often but it’s useless. I’m just thankful I have full range of movement and my hands look perfectly fine.”

“Learned non-use is tragic, and it doesn’t seem to be something most therapists of today explain to patients unfortunately.”

“I’ve never seen any literature on it. For me, I use my strong hand all the time because my left has no sensation so no grip.”

“Never heard of it nor saw it discussed anywhere...there seems to be a lot of muscle wastage on my left hand. It doesn’t bother me.”

Sadly, it is clear to see that the issue is often ignored, and the potential for stroke and brain injury survivors to regain strength and engage with their affected hand or limb isn’t realised, presenting a barrier to rehabilitation.

The effects of learned non-use on both mental health and motivation can be profound, but with expert support from an occupational therapist, treatment is possible, and this begins with raising awareness and opening a dialogue around what learned non-use is and the effects it can have.

“It is important that a variety of tasks and activities are used to challenge and stimulate movement in the affected a r m ,”

“Studies have shown that six hours a day of CIMT contributes towards recovery of movement in the affected hand, however changes can be seen with just three hours p e r d a y.”

GripAble ambassador Kate Allatt

How can occupational therapists address learned non-use in patients?

Occupational therapist and neurorehabilitation specialist Lauren Edwards has experience with tackling learned non-use in her clients undergoing neuro rehab.

Speaking about treating the issue, she said: “Constraint induced movement therapy (CIMT) can benefit those experiencing learned non-use. It is generally agreed that CIMT works best when there is a baseline level of movement present. Those with less movement are advised to explore alternative treatments first, but should always seek guidance from their therapist on what will work best for their individual circumstances.

“Studies have shown that six hours a day of CIMT contributes towards recovery of movement in the affected hand, however changes can be seen with just three hours per day.”

“It is important that a variety of tasks and activities are used to challenge and stimulate movement in the affected arm,” Lauren explained. “GripAble is a great tool to use at home for those undertaking a CIMT program. The games encourage wrist and hand movements and can be calibrated to the subtlest range of movement. Gaming can induce a sense of flow which can make those three hours pass a lot more quickly!”

Affordable remote rehab GripAble is a mobile assessment and training platform which includes bespoke hand-held sensors, mobile hardware, software, in-built gamification and data services, to enable home-based rehabilitation for patients with a wide range of neurological and musculoskeletal conditions including upper limb spasticity. GripAble’s unique handgrip sensor connects to a mobile app, allowing users to partake in specifically designed activities selected by their therapist, to train core hand and arm movements.

GripAble has been designed with remote rehab at its heart to enable ongoing training at home, even when face-to-face therapy isn’t possible. With the cost of living hitting many hard, GripAble has launched an affordable monthly rental option for homebased customers. At less than £1.50 a day, the rental has no minimum contract, making it an ideal option for people with short-term rehabilitation or training needs.

Chat to GripAble's friendly team of experts to see if the platform could help you, your family member, or your patients or clients: https://gripable.co/buy-try-now/ If you would like to discuss your experiences of learned non-use and rehab support, please get in touch with Kate Allatt via Twitter: @KateAllatt or email: kate@kateallatt.com.

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Create your own music – with THERA-music Explore how the power of music can enhance physical training with this innovative software.

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THER A-music is pure motivation I’m sure you know this feeling - Your favourite song is playing during an exercise session and suddenly the training session flies by. Music has an extreme influence on motivation and perceived exertion.

The brand new music biofeedback from THERA-Trainer is based on that effect but also goes one step further. With THERA-music, users can not only listen to music, they can influence it through their activity. They virtually create their own music during training.

Creating music through your own activity how does this work?

For patients, using THERA-music is extremely simple. A THERA-Trainer tigo bike is connected to the THERA-music tablet.

The patient selects a playlist (e.g. brass band music), starts the tigo, puts on the headphones and off they go. First they hear a slow beat, e.g., a tuba. The more actively the patient trains on the tigo, the fuller and more dynamic the music becomes - until at the end the whole band is playing. The effect of more activity can be experienced directly by the patient.

Put simply – THERA-Music is an enjoyable way of experiencing the effort you are putting into your training session on the tigo bike. Exercising on the tigo bike will never feel like a chore, but instead it will be a joyful experience.

A revolutionary technology The research into this technology comes from Prof. Dr. Thomas Fritz. At the Max Planck Institute for Human Cognitive and Brain Sciences in Leipzig, Germany. Professor Fritz and his team have been working intensively on the effect of music during exercise and the many benefits have all been scientifically proven.

For more information on THERA-music, the tigo bike or any other THERA-Trainer products, get in touch with the friendly team at THERA-Trainer UK in Milton Keynes.

Tel.: 01908 564100 www.thera-music.com

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Breakthrough - paving the future of case management A s a f o r wa r d - t h i n k i n g n ew b u s i n e s s i n t h e s e c to r, B r e a k t h r o u g h C a s e M a n a g e m e n t i s a d r i ve r f o r c h a n g e . H e r e , B r e a k t h r o u g h d i s c u s s e s i t s c o m m i t m e n t to i n n ova t i o n a n d b e s t p ra c t i c e , w h i l e n eve r m a k i n g c h a n g e f o r c h a n g e’s s a ke When you are looking for a case management company, you need a safe pair of hands.

Do they have the right specialist expertise and an ability to deliver what you need – when you need it? At the same time, you also want a case management company that is innovative. Do they explore new approaches or just stick to the same outdated technology, tools and ways of doing things?

The reasons for seeking a case management company are varied. You or a family member might need guidance and support following a life-changing injury. You might be looking for a job as a case manager to start or progress your career. Or you might be a solicitor requiring a case management company to support your clients.

Whatever your motivation for seeking a case management company, with Breakthrough you can be confident we have the knowledge and experience you need. But equally, we are trailblazers. Everything we do is focused on getting results for our clients, our partners and our team – whether it’s ground breaking rehabilitation technology, the latest case management and care software, inventive inhouse training programs, or inter-disciplinary knowledge sharing.

"Our clients can be confident they receive the best possible case management, rehabilitation, care and therapy."

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Building trust in case management Trust is fundamental in the relationship between a case manager and a family who has experienced a traumatic injury. There needs to be complete certainty we have our client’s best interests at heart and we’ve got their back.

Experience and the backing of an established case management company is the foundation this trust is built on.

The co-founders and directors of Breakthrough Case Management and Breakthrough Care, Annabelle Lofthouse and Catrin May, are

registered nurses with significant experience spanning over 30 years in healthcare.

In addition, they have both spent over a decade in complex case management and complex care support. Annabelle and Catrin work with a team of experienced case managers from a wide variety of clinical disciplines, supported by an operations team that ensures everything happens how and when it should do.

We are a relatively new company with a highly experienced team. Our clients can be confident they receive the best possible case management, rehabilitation, care and therapy.

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Innovative approaches to case management

Building partnerships and leading the industr y

With a long-established business, there is a risk of complacency and resistance to change.

Recent history shows it is often the young businesses that bring new and innovative ideas to a sector.

Apple, Google and Facebook were all early adopters, launching previously inconceivable new products and ways of working into the tech space. Mobile-only banking innovators, such as Monzo and Starling, have changed financial services forever. They all paved the way for other companies to follow.

As industry leaders, we adopt a similar mindset to get the best for our clients.

We are always looking for opportunities and ways to improve. Big or small. Constantly asking the ‘what if?’ questions with an unrelenting focus on results.

Technology also supports our partnerships with solicitors, insurers and other medico-legal professionals. Our case management software captures all the information needed to progress a case as efficiently and effectively as possible.

Reports and updates are saved securely and made immediately available to everyone involved in a case.

As a company we are developing tech partnerships that enhance the suite of services we provide and deliver innovations to market.

We are disrupting complex care support by reimagining traditional service modes and bringing our expertise as case managers into service delivery.

However, while we strive to be trailblazers and lead the case management industry, we never take risks. Compliance and safety are fundamental to good case management and care. We conduct regular audits, staff appraisals and client questionnaires to uncover any potential issues and identify areas for improvement.

This includes: • Bringing our staff training in-house and recruiting a new head of clinical training • Fostering cross pollination of best practice across the different disciplines involved in case management • Championing a pioneering approach to rehabilitation-focused care, where functional rehabilitation occurs every day • Adopting secure cloud-based software to create a more seamless journey for our case management and care clients and support all the professionals involved.

Supporting and growing our team This firm foundation and people-first approach, coupled with a mindset that supports innovation and growth, doesn’t only benefit our clients. It benefits the entire Breakthrough team.

Having a head of clinical training and dedicated Continuing Professional Development trainers to deliver in-house learning is a different approach to many others in the sector. It means we offer our team the best possible opportunities to grow and progress – and deliver the safest and best possible services to our clients.

Case managers often work remotely and operating in silos can mean best practice and new innovations aren’t shared. Not at Breakthrough. We ensure all the different disciplines and roles involved regularly communicate and discuss ideas.

This includes a comprehensive mentor scheme that matches new case managers with more experienced team members – often across disciplines.

We also invest in technology that makes the team’s job easier. For example, our care management software makes it easy to document daily notes and medical charts on a simple app. As well as providing a tool to track and monitor rehabilitation progress.

We are proud that the high standards we hold ourselves to are reflected in our (literally) outstanding results: • Outstanding rating from the Care Quality Commission (CQC) on our very first inspection • Outstanding rating of our service by 100 per cent of case management clients and families • Outstanding or good rating of our service by 100% of law firms and referred professionals.

Better case management and care Of course, for every Apple or Google, there’s a Theranos or WeWork. Companies that had an idea but didn’t follow through with delivery.

Sometimes change isn’t the right thing to do and the established ways of doing things work well.

At Breakthrough, we don’t change just for the sake of it. Our top priority is to do things right – and then we look to see how we could do things better.

"Our case management software captures all the information needed to progress a case as efficiently and effectively as possible. " 85

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‘It’s priceless to have your voice heard as a patient’ Through co-production, patients and families work jointly with their clinical team to determine goals and devise means of achieving them.

Through research, St Andrew’s Healthcare has established just how vital this is to the rehabilitation process - and what more can be done to make co-production even more patient-centric. NR Times learns more Co-production is not a new term in rehabilitation.

But while it is familiar, how widely is it used?

In many settings, while a patient will be involved

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in some, or even several, aspects of their care and rehab, it is still far from being ‘co produced’ with the patient’s voice - or that of their family not being heard as it should be.

But for St Andrew’s Healthcare, co-production is something that is keenly felt and understood.

By working side-by-side with patients and families, meaningful goals can be set based

around personal aspirations, which can lead to better engagement and positive outcomes.

As a provider, which supports with a range of neurological conditions - delivering neurorehabilitation to help patients rebuild their lives after brain injury through to bespoke support for those living with Huntington’s disease and dementia - the need for personcentred care, involving the patient and family at every possible opportunity, is a vital part of its care model.

And that commitment is something that is only increasing, with research from Senior Occupational Therapist, Fraser Scatterty whose research into the impact of coproduction in brain injury has revealed its crucial importance.

“I think it's probably priceless to have your voice heard as a patient, and that’s why this matters,” he says.

“Co-production is such an important thing to do, and for your patients to be involved in goal-setting and in being able to read and understand their care plans.

“This can lead to better outcomes and better engagement, which ultimately can only be in the patients’ best interests.”

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Co-production in practice By its very definition, co-production revolves around working jointly to create something, which is vital in the delivery of person-centred care.

But getting to the root of what that should mean has been the mission of Fraser through his MSc dissertation, geared around the work at St Andrew’s and based on the feedback of fellow occupational therapists (OTs) in the neuro team.

“I think, generally, everyone agreed it was related to getting more of the patient's voice and being more patient goal directed, rather than therapist goal directed,” he tells NR Times.

“Basically, you create your care plans around what's most important to the patient, getting patient and family advocacy, establishing your treatment programmes, in a more equal partnership rather than it being a traditional medical model.

“From the literature I've read around coproduction, it looks at the outcomes as well - when people are working towards their own set goals, motivation is more likely to be there.

And then we get better engagement and better outcomes.”

The value of being able to set goals is at the heart of co-production, which the patient can then be guided and supported to achieve.

“We’ll ask them ‘What are your goals’? Typically it’s that they want to go home, so it’s about breaking that down into how we are going to do this,” says Fraser.

“What do you need to do? What do we need to do? What can we be working on together?

“We might have a patient who goes to the art studio once a week, but when you break that down and analyse why, it’s because they want to make presents for their family to maintain the links with them and continue to feel involved. So getting to the heart of that makes everything a lot more clear and person-driven.”

Fraser believes language used in care plans also lies at the heart of ensuring a patient can truly be involved in co-production.

“You’ll have a care plan that says ‘Go to the art studio once a week’ but isn’t capturing why.

We’re probably using more global language that fits into the FIM+FAM assessment criteria,” he says.

“I think often care plans aren’t really suitable for our patients, they couldn’t really understand them. And it’s really important that we do that, and put our co-production values into achieving this.

“We use the FIM+FAM outcome measure, but that means nothing to our patients. I have never heard a patient say ‘I’m doing level three on cooking, I’d love to be level five’. That just doesn’t happen.

“Co-producing is about getting them to understand and develop a goal around what matters to them. I was working with a lady a couple of weeks ago and she wants to look after her children, she wants to be able to be safe in the kitchen. That's a very personal goal for her because it's about looking after her children, it’s not about FIM+FAM level three or four.

“Neither do you want a 17-page care plan a patient can’t understand - you want something that is accessible to them, that they can read and know what we are working with them to achieve. Language is very important in doing that. ” As well as personal goals, global goals can also be used to positive effect.

“You can have maybe four of five goals, which are very valuable tools - ‘are you happy with your sleeping pattern?’ for example,” says Fraser.

“Patients are never going to come forward with concerns about getting better sleep, but when you raise it and ask about the quality of things, it helps them to recognise that maybe improvement can be made. So they can set a personal goal around that, which we can then work towards.”

However, there are some domains in which clinicians should continue to lead, to protect the best interests of the patients, says Fraser.

“In reality, we sit down, we talk to patients, we get their views - but we always have to balance that against best interests and a duty of care,” he says.

“For example, we maybe have a team goal of somebody having a shower twice a week to maintain their skin integrity and their hygiene.

But they might not recognise that as a problem at all.

“Getting them to co-produce a care plan around showering is very difficult - but we will do this as far as possible.”

“We are all goal-driven people as human beings, and if you’ve got your own goals and agenda, you’re going to work harder for it and be more engaged for longer.”

Co-production made even more person-centred From Fraser’s research, co-production was identified as being a hugely valuable resource in brain injury rehabilitation at St Andrew’s - but one in which improvements can continue to be made.

With recommendations about the training of staff to secure a better understanding, and the improved accessibility of care plans, the willingness and agility of St Andrew’s to adopt new and improved working practices is seeing changes already being made.

“Ultimately, the whole point of the research is that we want to recognise areas where we could or should be doing things better and to improve our own practice - that’s for the benefit of everyone, and there is always more we can do,” says Fraser.

“I think working in a neuro setting, we work with our patients for long enough and work so closely with them that we do get a really, really good understanding of them and what is important to them.

“I think co-production is something that we do and we have done for a long time, but it maybe isn’t always recorded. The value of doing that is huge for the patient, in transferring that into almost a co-production formula, and that’s something we are already looking at.”

New care plans is something, which is also underway, making them more accessible and relevant than ever before to patients.

“One of the big things that came out of my research was around care plans. I think that’s definitely an area we can get our co-production values in a lot more,” says Fraser.

“It needs to be more ‘This is what I want, this is how I'm going to get it, and this is who's going to help me’. So very simple.

“And by doing it that way, we can make it more goaldriven for the patient.

“We are all goal-driven people as human beings, and if you’ve got your own goals and agenda, you’re going to work harder for it and be more engaged for longer.”

For staff too, the benefit of further training could in turn support patients and families to achieve their co-production goals.

“I think some training would be a really good idea, where we look at co-production in the care plans, the positive outcomes we achieve, what more we can do,” says Fraser.

“As neuro professionals, we do have a tacit understanding of our patients anyway, and that’s a very important point - but if we documented that more than we currently do, I think that would have a very positive impact.

“I know we’re looking to move forward with that, after what has been a very busy time I think we’re now getting some headspace to look at this and to involve our patients and their families in what we do even more.”

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Treating trauma through the power of the arts Through the use of music, drama and art therapy, therapists at Chroma are helping children, adults and families to understand and manage the symptoms of trauma, to enable them to make significant progress in their lives.

Here, NR Times learns how Chroma engages children in its therapy, and how it is now equipping others to make such life-changing differences by rolling out its CPD-accredited training programme.

The power of the arts in delivering therapeutic outcomes for children living and dealing with trauma cannot be underestimated. Trauma can be caused by a brain injury, a difficult family situation, an illness or because parents have relocated for work.

Through engaging young people in the suite of arts therapies - music, art and drama - its life-changing results show its benefits in treating the impact of trauma in ways statistics cannot always properly quantify. Case managers, social workers and parents are kept closely up to date about progress in sessions, supported by a range of data and outcomes from assessment tools that Chroma uses.

For creative arts therapist Rachel Swanick, she confesses to having a “bucket full” of anecdotal examples of how traumatised children have responded positively to arts therapy.

“There’s one boy I’m working with at the moment, I’m in my third year with him. It took 18 months for him to even look at me and play with me. I often wonder what would have happened if I’d given up before that,” says Rachel, a senior clinical therapist with Chroma.

“And then it took another year for him to start drawing houses and to put my house next to his. And only in the past few weeks at school, three years on, has he started talking about feeling sad, feeling happy, that he wants to make friends, that he wants to play football with somebody. His language has come on so well.

“While I’m not saying that’s completely down to this creative arts therapy, there must be something about that consistency of care, where he can start to express himself, as well as his own development and feeling safe.”

The power to engage young people - as well as adults - in arts-led trauma therapy runs throughout Chroma, whose approach is now being rolled out through The CPD Service’s CPDaccreditation scheme, extending the positive impact of its therapies even further.

"The power to engage young people - as well as adults - in arts-led trauma therapy runs throughout Chroma, whose approach is now being rolled out through The CPD Service’s CPDaccreditation scheme, extending the positive impact of its therapies even further."

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The suite of training is now in its second successful year and while they are not tackling the root causes of trauma – they are helping professionals to think about how trauma is impacting children and their families, and how they can support the children in a traumainformed way.

“They can promptly put something together and research it so they can adapt to our client’s needs very quickly - they are incorporating diversity into the CPD programme, which isn’t just about race, gender or age, they cover the whole spectrum - disability, religion, socioeconomic aspiration, education,” says Rachel.

They work with all types of therapists, social workers, educators and anyone who works in a school. They are seeing a really big response.”

The training covers the core principles of how Chroma’s national wide team of arts therapists engage children impacted by trauma, with Rachel identifying a four-step model: 1 . C R E AT I N G S A F E T Y - “You want to

help the child to feel safe and calm, so they can trust you. We want to stop the ‘fight or flight’ approach so they know you are there for them. That is also achieved through consistent attendance over a period of time”.

2 . R E G U L AT I O N - “They’ll help the child to become aware of their emotions, to be aware of the bodily sensations that are coming up, and find the language to express that. They are looking to help them one day to think ‘I’m feeling really bad right now, but I know I need to do this and a positive outcome will happen”.

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"One of the things about therapy is that we don't often see the full effects of it as therapists because it might start working a year down the line" 3 . C O N N E C T I O N - “When you’ve helped the child to trust you and feel safe, you can make a connection with them. It can be playing with them in a way they enjoy, sitting next to them, whatever it might be - but you can’t get to this point until you’ve done the previous two”.

4 . C O N S I S T E N C Y - “You need to keep going with the therapeutic plan for a good length of time, at least six weeks to see if there is any change; there might not be, and then you can evaluate and change it, but everybody needs to be working on that consistently”.

While trauma is the overarching context that informs the therapist’s thinking, its causes can be wide-ranging, explains Rachel.

“We’d define trauma as an emotional and physiological reaction to a situation which is negative,” she says.

“We see the interpersonal ongoing themes, like abuse, neglect, mental ill health in the home, a brain injury to the client or a loved one, or maybe witnessing something that has happened to a parent or a parent being in prison. In that situation, the trauma can be the after-effects of that.

“There can also be the situation where a child has had the traumatic experience of abuse or neglect and then is removed from the home to a foster or care placement. This adds to the trauma as even though their first home was detrimental to their wellbeing, the child has been taken away from their safe place and attachment figures. So the trauma can impact on the attachment styles of the child, it can become maladaptive.

“Some of them are so young - some are four or five when they come to us - and you have all of these layers that the child is dealing with, they’re already having to deal with such complexity. But that’s why it’s so important to make them feel safe and consistency is key to building the trust that will lead to them engaging.”

While Rachel has countless examples of successful progress and outcomes from children engaged by the Chroma team, she points out that its impact may not always be visible if you are working with a child for the minimum six-month period - but by laying the foundations, positive results can be achieved for children and families in time.

“One of the things about therapy is that we don't often see the full effects of it as therapists because it might start working a year down the line,” she says.

“That’s when everything has been integrated.

And that's when the change can happen. It’s probably not something you can measure on the day you finish.

“I’ll usually try and evaluate every six weeks and see what we are doing and what else we could be doing. It’s also really important, as well as the work you’re doing with the child, to help the parent feel more supported. That

can help achieve a more enduring sense of change. By focusing solely on the child, you can impact on their behaviours. By focusing on the parent as well, you can elicit more positive attachment feelings, helping both parent and child feel safe and loved.

“We had one situation where a child had no boundaries at all at home, it was complete chaos with the child ruling the roost completely, which can be frightening for the child because they don’t know who is in control.

“We’ve been working with them since 2020 and the therapist has been able to model different relationships, which have been very positive for the child and they now feel safer in their relationship. They’ve worked really hard outside of the sessions. It has been hard work, but it shows that with the four-step plan and the commitment, we can achieve really good things.”

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Assessment of Behavioural Risk in Neurological Services For many years, clinicians in mainstream mental health and forensic services have made use of formal risk assessment tools that aid decisions regarding the treatment and management of people with challenging behaviour and /or offending histories.

However, the applicability of such measures outside of the mainstream is questionable, and in neurological or neurobehavioural services, there has been little formal research considering their validity and reliability, or indeed to question whether such tools would be helpful.

Risk assessment in this context has evolved over the past 50 years, after a seminal study

by Ennis & Litwack (1974) who claimed that using clinical judgement alone to determine an individual’s risk was akin to ‘flipping coins in the courtroom’. As such, their view was that clinical judgement was no better than chance, nor was it particularly scientific. This was one of the studies that precipitated a large number of measures to be developed in the years that followed, referred to as ‘actuarial’ measures of risk.

Tools such as the Violence Risk Appraisal Guide (VRAG; Harris et al, 1993) and the Static-99 (Hanson, 1997) comprised static, and therefore unchangeable, factors that claimed to predict violent or sexual offending behaviours. However, over time, these fell out of favour as they (i) had variable reliability and validity for many populations, eg, Learning Disability (Lindsay et al, 2008), and (ii) they are based upon unchanging factors, and so do not account for behavioural change post-treatment.

In the mid-1990s, a new form of risk assessment was born: the Structured Professional Judgement (SPJ). SPJ tools, such as the HCR-20 Violence Risk Assessment

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(Webster et al, 1995; Douglas et al, 2013), Risk of Sexual Violence Protocol (RSVP; Hart et al, 2003) and Short-Term Assessment of Risk and Treatability (START; Nicholls et al, 2007) blended historical, current clinical and future focused variables, with the aim of understanding a person’s risk, as well as helping to generate management plans to mitigate it. Such tools are now commonplace in clinical and forensic practice, yet their utility outside of mainstream prison and mental health populations remains questionable. For example, in a study considering risk assessment for people with Learning Disability and Autism across varying tiers of secure and community care (Lindsay

et al, 2008), it was found that the HCR-20, arguably the most commonly used of the SPJ tools, was less predictive of risk behaviours than in the mental health population the tool was developed for. This unsurprising when considering some or the variables included in the schemes, such as relationship stability and employment history. These factors are cited to represent a lifestyle predictive of violence in mainstream populations, but in Learning Disability, many people coming to the attention of services may have had similar problems as a result of cognitive deficit, communication difficulties or social disadvantage, rather than a chaotic and aggressive way of living.

References: Alderman, N., Knight, C. & Morgan, C. (1997). Use of a modified Overt Aggression Scale in the measurement and assessment of aggressive behaviours following brain injury. Brain Injury, 11(7), 503-23.

Alderman, N., Major, G & Brooks, J (2018). What can structured professional judgement tools contribute to management of neurobehavioural disability? Predictive validity of the Short-Term Assessment of Risk and Treatability (START) in acquired brain injury. Neuropsychological Rehabilitation, Vol.28, No.3., pp448-465. Alderman, N., Wood, R. L., & Williams, C. (2011). The development of the St Andrew’s-Swansea Neurobehavioural Outcome Scale: Validity and reliability of a new measure of neurobehavioural disability and social handicap. Brain injury, 25(1), 83-100. doi: 10.3109/02699052.2010.532849. Douglas, K. S., Hart, S. D., Webster, C. D., & Belfrage, H. (2013). HCR-20 (Version 3): Assessing risk of violence – User guide. Burnaby, Canada: Mental Health, Law, and Policy Institute, Simon Fraser University. Ennis, B.J. & Litwack, T.R. (1974). Psychiatry and the Presumption of Expertise: Flipping Coins in the Courtroom. California Law Review, Vol.62, No.3, pp. 693-752. Hanson, R. K. (1997). The development of a brief actuarial risk scale for sexual offense recidivism.

(User Report 97-04). Ottawa: Department of the Solicitor General of Canada. Harris, G. T., Rice, M. E. & Quinsey, V. L. (1993) Violent recidivism of mentally disordered offenders: The development of a statistical prediction

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Neurological Populations Neurological, and especially neurobehavioural, services can observe high levels of verbal and physical aggression from service users, as well as sexually disinhibited behaviours, property damage and self-harming. This is in addition to the risk of falls, fire and a general poor awareness of the environment as a consequence of cognitive impairment. However, there are few studies that have sought to develop methodologies that help clinicians to quantify risk or to predict the likelihood of such behaviours before, during and after intervention. This is perhaps unsurprising given the heterogeneous nature of the population with which we work. In addition, research by Alderman et al (2018) found that the START, which has rapidly become a popular measure of risk in mental health populations, was unsuitable for neurobehavioural populations. The authors concluded that the tool did not efficiently predict challenging behaviours, but that the field would potentially benefit from measures designed with this population in mind.

Neurobehavioural (NbR) services often take the view that the best predictor of behaviour is past behaviour, which is a longstanding tenet of behaviourism. As such, NbR services often utilize tools such as the OAS-MNR (Alderman, Knight & Morgan, 1997) and SASBA (Alderman, Johnson, Green, Birkett-Swan & Yorston, 2008) as a means of collecting rich data that can inform functional analyses and intervention plans. Such tools are not referred to as ‘risk assessments’, but there is certainly an overlap in terms of how the data may be used.

"There are numerous models that may be used to support teams to formulate the risks and needs of a given patient, all of which have pros and cons."

A Solution Under Our Nose?

Clinical formulation has long been the bedrock of Applied Psychology, as a means of synthesizing data from various sources into a coherent narrative and set of interconnected and testable hypotheses regarding a specific behaviour. As such, when conducted well, a clinical formulation should bypass the concerns raised by Ennis & Litwack and provide teams with a structured approach to aid our understanding of an individual and their behaviour, whether this be the result of ABI, progressive disorders or other underlying conditions. As such, rather than seeking to develop new tools, perhaps this may be our most reliable method of assessing risk.

Historically, formulation was seen as the domain of Applied Psychologists, as Applied Psychology training has a focus on the development of formulation skills. However, it is vital that such work is completed as a team, in order to ensure good validity and reliability of any decisions made – together we can see what individually we cannot.

There are numerous models that may be used to support teams to formulate the risks and needs of a given patient, all of which have pros and cons. However, all formulations require a consistent structure (a parity of

approach tends to aid staff understanding) and a way of pulling together qualitative or quantitative data from a range of sources.

Arguably, this information should come from a range of reliable sources and at least incorporate a review of premorbid personality and behaviour; symptoms observed post-ABI, with consideration as to the specific areas of injury; and an analysis of the protective factors that aid the person’s resilience to cope with emotional and behavioural distress.

In addition, it makes sense to embed a data-led approach to help identify (i) the likely functions of the person’s behaviour, ie, to conduct a functional assessment using validated behavioural observation tools such as the OAS-MNR (Alderman et al, 1997), and (ii) reflect on potentially helpful measures that identify and/or quantify specific areas of functioning that would benefit from treatment, such as the SASNOS (Alderman, Wood & Williams, 2011). While such a process moves away from a ‘checklist style approach’ used in mainstream services, and could be seen to be labour intensive, such an approach is arguably more robust, holistic and tailored for the individual, while still drawing upon tools already validated for this complex and heterogeneous population.

Paul Mooney BSc(Hons); MSc; CPsychol(Foren); AFBPsS; CSCi Clinical Director for Service Development & Improvement, Elysium Neurological Services Assistant Professor, School of Medicine, University of Nottingham Visiting Fellow, School of Psychology, University of Lincoln Prof Nick Alderman BA (Hons), MAppSci, PhD, CPsychol, CSci, FBPsS Senior Clinical Director & Head of Psychology, Elysium Neurological Services Department of Psychology, Swansea University, Swansea, UK

instrument. Criminal Justice and Behaviour, 20, 315–335.CrossRefGoogle Scholar. Hart, S., Kropp, P.R., & Laws, D.R.; with Klaver, J., Logan, C, & Watt, K.A. (2003). The Risk for Sexual Violence Protocol (RSVP): Structured professional guidelines for assessing risk of sexual violence. Vancouver, BC: The Institute Against Family Violence. Knight, C., Alderman, N, Johnson, C., Green, S., Birkett-Swan, L. & Yorstan, G (2008). The St Andrew’s Sexual Behaviour Assessment (SASBA): Development of a standardized recording instrument for the measurement and assessment of challenging sexual behaviour in people with progressive and acquired neurological impairment.

Neuropsychological Rehabilitation, 18(2), 129-59. Lindsay, W. R., Hogue, T. E., Taylor, J. L., Steptoe, L., Mooney, P., O'Brien, G., & Smith, A. H. W. (2008). Risk assessment in offenders with intellectual disability: A comparison across three levels of security. International Journal of Offender Therapy & Comparative Criminology, 52, 90-111. Nicholls, T., Gagnon, N., Crocker, A., Brink, J., Desmarais, S., & Webster, C. (2007). START Outcomes Scale (SOS). Vancouver, Canada: BC Mental Health & Addiction Services. Webster, C. D., Eaves, D., Douglas, K.S. & Wintrup, A. (1995). The HCR-20 Scheme: The assessment of dangerousness and risk, British Columbia: Simon Fraser University and British Columbia Forensic Services Commission.

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