Neuro Rehab Times issue 28

NR TIMES

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The NR Times Awards are now open! Check out all the categories inside

Rebuilding lives and creating futures

QEF’s

We provide person-centred, holistic therapy and care and work closely with the NHS, case managers, families and everyone involved with an individual’s neuro rehabilitation.

Dynamic Compression: As Easy as SDO®

Many thousands of people have medical conditions that affect their movement, posture and coordination, which in turn can prevent them from enjoying a happy, fulfilled life.

SDO® Original

A made-to-measure Lycra® garment (Class 1) medical device, designed and produced to the finest detail. It provides dynamic compression to increase sensory and proprioceptive feedback as well as provide musculoskeletal support. This Lycra® garment can assist and lead to motor learning and neural integration. Through the use of an SDO® providing constant, consistent compression, stretch, support and sensory information, the patient is given the effect of therapeutic handling for the time that the garment is worn.

Clinical observations and the evidence available shows that wearing the SDO® leads to an improvement in positioning, posture and function because it provides musculoskeletal alignment, postural stability and sensory feedback. This is thought to be due to the stimulation of the somatosensory and musculoskeletal systems which give changes in tone and postural alignment. This will then lead to improved proximal stability and improved biomechanical advantage for muscle activation and enhancement of learning strategies.

SDO® Original, Reinforcement Panels: The SDO® garment can be customised to meet the musculoskeletal needs of the patient by using reinforcement panels. The decision will be made by the prescribing clinician dependent on the functional outcome desired. There is a selection of panels that can be used in isolation or in combination with other panels to achieve the goal in postural control and body alignment.

SDO® Lite

A range of garments is available for clinicians to support assessment of the patient and suitability for dynamic compression. SDO® Lite garments are designed for clinicians to evaluate the impact of increasing sensory and proprioceptive feedback prior to the provision of a made-to-measure garment.

Join the team

Are you passionate about delivering the highest standards of care to patients and do you have experience in assessment, measuring, and prescribing dynamic Lycra® garments?

We are expanding our team of Clinical Specialists to support our customers and play a part in the future development of the SDO® product range.

SDO® Lead Clinical Specialist

Full time and ideally centrally located SDO® Clinical Specialist

Regional and part time or full time, employed or associate

Are you a neurophysio, an occupational therapist or an orthotist and would like to know more about our business, products and the role you could play?

Key Responsibilities include:

• Set up and support SDO® Lycra® clinics, including patient assessment and measuring, fitting of SDO® garments

• Provide training to clinicians to assess, measure and fit SDO® Lycra® garments

• Attend relevant national conferences to present the SDO® range of products with the team

• Engage with the product design and development department to support the continued innovation in our products and technologies

What you will bring

• HCPC registered Occupational Therapist/ Orthotist/Physiotherapist, ideally with a minimum of 4 years clinical experience

• Evidence of training and certification in neurological rehabilitation desirable

• Adult/paediatric neurological experience would be desirable, but we will consider high calibre candidates with relevant specialist experience

• Excellent interpersonal skills and willingness to travel

Medigarments Ltd

t: 0115 973 4300

• e: customerservice@jobskin.co.uk

www.jobskin.co.uk

For full job description, please visit: www.jobskin.co.uk/sdo-clinical-specialist

Please send CV’s to: opportunities@jobskin.co.uk

Celebrating 20 Years of Sleep Unlimited

As one of the pillars of health, good sleep is vital for both successful rehabilitation and compliance with other therapies.

Sleep Unlimited specialise in assessment of those with complex conditions using Actigraphy – and advice using Cognitive Behavioural Therapy for Insomnia (the NICE recommended guidelines for treating an insomnia disorder).

Please email denise@sleepunlimited.co.uk for an information pack and free sleep screening questionnaire.

We also run training for healthcare professionals – our highly acclaimed REST® Training Programme includes: a two day training course; option to sign up for a license to use the REST® resources; and group supervision sessions.

Please email training@sleepunlimited.co.uk for a course flyer and booking form, or see our website www.sleepunlimited.co.uk

Sleep Unlimited Ltd PO 570, Gateshead NE8 9GF 0191 580 0008

www.sleepunlimited.co.uk for our website

For our interactive digital edition visit nrtimes.co.uk

Unveiling our first-ever NR Times Awards

Welcome to issue 28 of NR Times - an issue where we are very excited to bring you the first-ever NR Times Awards.

I regularly talk in my Editor’s Note about how inspired we are at NR Times about the work being done in neuro-rehab to change the future for countless people who live with neurological illness or injury.

The innovation, commitment and determination we write about every day really do leave us feeling so inspired. Being able to tell the stories of the amazing work of the individuals, teams and organisations who are truly helping to redefine what is possible is such a privilege; but we wanted to find other ways to highlight this, too.

Send your stories and opinions to Deborah Johnson, Editor deborah@aspectpublishing.co.uk

For advertising enquiries contact Gary Wilding, Head of Sales gary@aspectpublishing.co.uk

Also on the NR Times team: Andrew Mernin, Founder / MD andrew@aspectpublishing.co.uk Chloe Hayward, Sales Sorina Mihaila, Designer Andrew Nealen, Contributor

Creating the NR Times Awards felt like an apt way to do this. Through our 12 categories, we hoped to reflect the excellence being seen across the entire field of neuro-rehab, and to shine a light on each entrant and learn more about the work they do.

Already, way in advance of the deadline of August 31, entries have been flooding in both from nominees themselves, and from those making submissions on behalf of others - this is something we particularly welcome, as we understand that many feel they are ‘just doing their jobs’. But to us, their phenomenal contribution is wholly worthy of recognition, so we would urge anyone to make submissions for those who may not do so themselves.

Our grateful thanks go to the sponsors of our first-ever NR Times Awards, without whom this would not be happening.

As our headline sponsor, and also a category sponsor, special thanks go to Elysium Healthcare.

Thanks too to our valued partners in the awards - Askham Rehab; BIS Services; Breakthrough Case Management; Chroma, Embrace HR; Iris Care Group; Irwin Mitchell; Morrello Clinics; Reach; Think Therapy 1st and TRU Rehab.

We are delighted with the response we have seen so far and are grateful for the support we have had. Please continue to make your nominations, we look forward to receiving them and reviewing them with our expert judging panel.

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)

Collaborative

Shortlists will be revealed in September, and the NR Times Awards ceremony takes place on October 26, where the winners will be announced. We do hope you will join us for that.

In the meanwhile, thank you for all of your submissions, kind words about our awards and interaction on social media, and for your continued support of our NR Times website and magazine. We hope you enjoy this issue and please keep in touch - we always love to hear your thoughts and feedback.

@editorNRTimes company/nrtimes

The Awards, established this year as an annual search for the individuals, groups and initiatives whose contribution to neuro-rehab is helping to enhance patient outcomes and bring new levels of hope for the future.

The NR Times Awards have 12 categories open for nomination, with submissions sought from across the UK and internationally to recognise

the innovation, dedication and leadership of those working in this vital branch of healthcare. Nominations can be made until the deadline of August 31. The winners will be announced at an online ceremony on October 26. The Awards, which are sponsored by Elysium Healthcare, seek to recognise the significant contributions of those working throughout

the field of neuro-rehab; from those carrying out the research behind life-changing innovations, to those delivering care and support on the frontline, and everything in between. An independent panel of judges will decide the winner of 11 categories, with the Rehab Leader of the Year accolade determined by a public vote.

Enter the NR Times Awards 2023 via the NR Times website: www.nrtimes.co.uk

The inaugural NR Times Awards are now open for entry – could you be named among the organisations and individuals who are leading the way in changing the future of neuro-rehab?

CATEGORIES

Beyond-expectation rehab outcome of the year – sponsored by Elysium Healthcare

Through effective combination of teamwork and neuro-rehab, people with life-changing injuries continue to surpass expectations in what can be achieved. We are looking for cases in which patients have secured lifechanging progress through the work of either an individual practitioner or business, or that of an MDT, enabling them to look to an infinitely more positive future.

Above and beyond award – sponsored by BIS Services

Healthcare is a field in which the phrase ‘above and beyond’ is regularly and rightly used to describe the selfless dedication of those working within the sector.

This award looks to recognise the commitment of individuals, teams or whole organisations in truly going that extra mile, going ‘above and beyond’ their line of work to achieve something remarkable.

Brain/spinal injury law firm of the year – sponsored by Chroma

The work of a legal team in securing a settlement and bespoke package of rehabilitation after brain or spinal cord injury can truly be life-changing for whole families. We are looking to find those lawyers who truly go the extra mile for clients in achieving that, displaying deep commitment to achieving the best outcome, delivering unrivalled service and keeping the client at the heart of the matter throughout the process.

Neuro-rehab innovation of the year –sponsored by Iris Care Group. Neuro-rehab continues to see huge advances, with new technology and ways of working helping to redefine what is possible for patients with neurological injury or illness. We are looking for the individuals or providers who has embraced innovation to give new hope and secure beyondexpectation outcomes, helping to create examples of best practice which set an example to the wider sector.

Inspirational contribution award –sponsored by Tru Rehab.

In neuro-rehab, every day brings stories of hope and inspiration, whether through patients achieving huge and unexpected milestones, the dedication of clinicians in supporting clients to achieve new heights, or the work of charity figures or family members in delivering the much-needed support. This award will highlight examples of these inspirational and often lifechanging contributions that mean so much.

Charity of the year – sponsored by Reach.

The work of charities supports countless patients and families in their recovery and day-to-day lives, helping to create the support structure around whole families that can be so truly life-changing in its impact. We want to find those charities whose interventions are so critical to the lives of those living with neurological illness or injury, working in innovative and proactive ways to sustain and grow the organisation, while putting service users at the heart of everything they do.

Remote rehab initiative of the year –sponsored by Think Therapy 1st. Through the ongoing introduction of digitalisation into healthcare, the field of neuro-rehab particularly has seen a number of new working practices and innovations to support remote rehabilitation for patients. This award will recognise the most outstanding examples of technology or revised ways of working which fully embrace remote rehab and the opportunities it brings.

Case management firm of the year –sponsored by Morrello Clinic. This is an exciting time for case management, with the development of the IRCM helping to create a new future for the profession. We want to find those firms who are making their own contribution to a dynamic and forward-thinking direction for case management, working collaboratively to deliver the care, support and rehabilitation a client needs, placing the client at the heart of everything and securing life-changing outcomes.

Research initiative of the year –sponsored by Askham Rehab. Research is fundamental to the ongoing innovation and development of neuro-rehab, and in paving the way to redefined futures for people after life-changing injury. We are looking for examples of research initiatives which are seeking to make the positive change which will lead to a better future, either for people currently living with brain or spinal cord injury, or to give hope for the future.

People’s choice: rehab leader of the year – sponsored by Breakthrough Case Management

This award will recognise the individual, from whatever branch of neuro-rehab they operate in, who has truly excelled in their field through leadership, contribution, commitment and compassion. This award will be chosen by a public vote from a pre-determined shortlist, inviting colleagues and contemporaries to make their choice of who should be named as winner of this category.

Therapy provider of the year –sponsored by Irwin Mitchell Therapy providers play a crucial role in the rehabilitation process, delivering the interventions which can be so vital in transforming lives after serious injury. This award will recognise the provider – from any therapy discipline – who is truly going over and above in the delivery of its service, embracing innovation and best practice, while supporting the client in every way possible in rebuilding their life.

Charity of the year – sponsored by Reach.

The work of charities supports countless patients and families in their recovery and day-to-day lives, helping to create the support structure around whole families that can be so truly life-changing in its impact. We want to find those charities whose interventions are so critical to the lives of those living with neurological illness or injury, working in innovative and proactive ways to sustain and grow the organisation, while putting service users at the heart of everything they do.

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Chroma invests in new technology to track and manage rehab goals

Goal Manager streamlines the goal setting process enabling Chroma’s therapists to spend more time with their clients and less time on admin and sets a new gold-standard practice around this aspect of Chroma’s work. Their partnership comes as the new statutory law regarding HCPC registered health professionals being mandated to use digital record-keeping methods comes into force on 1st September 2023. Chroma’s collaboration with Goal Manager has just begun, with therapists being training on how to use the system, enabling them to start using it on all new cases from April 2023. The software is based on the WHO’s International Classification of Functioning, Disability and Health (ICF), which is an internationally recognised framework for describing and organising information on functioning and disability. It provides a standard language and a conceptual basis for the definition and measurement of health and disability, providing a comprehensive assessment and data on clients’ unique circumstances and functioning. The software provides an infrastructure to set GAS and SMART goals, track, report and map treatment journeys and outcomes, as well as robust data and the ability to identify therapy gaps.

The Goal Manager Data Dashboard offers accessible, easier to review data and collates summary data – all of which will be accessible to all service providers.

Daniel Thomas, managing director at Chroma said: “With Goal Manager, we can gather more quantitative and qualitative data than ever before – using 360-degree assessment, the software automatically crunches data allowing us to look at service wide and individual data.” Chroma will use the new software to update standards of proficiency and encourage their therapists to engage with digital technologies. Goal setting in rehabilitation is necessary when determining the best treatment for patients, to help motivate clients and track progress, but it can be time-consuming and so due to a lack of time, goal setting across services remains inconsistent. To help support us as an already outstanding therapeutic service, we have implemented Goal Manager to enhance how we set goals effectively and in a timely manner. We can create goals,

scale goals, add SMART objectives, view and download reports. Data can also demonstrate the cost-effectiveness of services and performance management giving us a clear picture of the difference our service is making to clients’ lives. The software utilises the most evidenced-based frameworks in rehab goal setting, freeing up therapists’ time and administrative demands to focus on clinical work and setting meaningful goals.”

Dr Penny Trayner, Paediatric Clinical Neuropsychologist at Clinical Neuropsychology Services, added: “We are delighted Chroma has decided to become the UK's first Arts Therapies provider to adopt Goal Manager. Our cloudbased software is compliant with all UK and European regulations, including GDPR and clinical studies, have shown that using Goal Manager can reduce the time taken to set and review goals by almost 50% over a 6-month period, meaning they will have more time to spend with clients and less time and effort on paperwork."

The body created to help shape the future of case management is in a “brilliant place” to move into the future, after three years of work ‘behind the scenes’ to take it forward.

The positive change inspired by tragedy

After Jane Plumb’s son Theo died at only 17 hours old as a result of Group B Strep infection, she resolved to raise awareness of the then-little known condition, and fight for the necessary change which could save the lives of other babies.

Now, 27 years later, significant progress continues to be made in the approach to Group B Strep within UK healthcare, led and inspired by the work of Group B Strep Support, the charity established by Jane and her husband Robert in 1996. Here, NR Times learns more about the work of GBSS, the advances to date, and why progress is tinged with frustration at how long urgently-needed change continues to take.

Since the loss of Theo, the middle child of Jane and Robert Plumb, to Group B Strep infection in 1996, what was then a condition with little recognition among the healthcare communityand almost no familiarity among the general public - is now firmly on the radar of both expectant mothers and health professionals alike. Group B Strep - the most common cause of severe infection in newborn babies, causing sepsis, pneumonia or meningitis - is now well known and its symptoms recognised. Over 80 per cent of pregnant and new mothers are aware of the condition and national guidance has been introduced. Recently, Group B Strep in labour was included in the latest Care Competency Framework from NHS England, which sets minimum training standards for all health professionals working in maternity and neonatal care. And these huge, life-saving advances have come about through the work and unrelenting determination of Group B Strep Support (GBSS), the charity established by Jane and Robert in

the hope that other families would be saved from the heartbreak of the loss of a child through better awareness and preventative measures. GBSS also supports families who have been affected by the devastating infection, with their interventions hailed as “invaluable”.

While the quest for routine testing goes on - although the world-first GBS3 trial will hopefully lead to long-awaited progress - and development of a vaccine continues, the advances made to date have, without doubt, saved the lives of countless babies across the country.

“Looking back, I’m really proud of what we have achieved as a team,” says Jane, who was awarded an MBE for her tireless dedication to the cause.

“Yes, at times it has been very frustrating at how long it has taken for change to be made - at times it has felt glacial - but the progress we have made has been so positive. And I’m excited about what’s coming.

“It feels like we are entering ‘end game’ time. The vaccine will be a game-changer. The GBS3 trial is really important for the UK, but will also have implications for other countries around the world. The Core Competency Framework was an absolutely brilliant step forward.

“There is a lot to be positive about - but we won’t stop, we can’t stop, until we can eradicate Group B Strep infection in babies.”

The lack of awareness that led to action

After the devastation of the loss of Theo, the trauma was compounded further by the shock of being told the reason behind it - Group B Strep infection.

“Just as we were leaving the hospital, the neonatologist ran down the corridor and told us they think Theo died because of Group B Strep infection. We literally had no idea what that was,” recalls Jane.

“Theo was my second pregnancy and I’d bought every book about pregnancy you could buy - this was 1996, when the internet wasn’t yet a ‘thing’ - I got loads of magazines, and there was nothing mentioned at all. It wasn’t mentioned at any of my maternity appointments.

“It was virtually unknown. There was no information publicly available, no guidelines in the UK, nothing.

“My husband and I began to research it, and six weeks on when we went to see the consultant obstetrician, it was clear our information was better than the information he had about Group B Strep at this point.”

As well as finding out more about Group B Strep and its implications, Jane and Robert were horrified to discover the scale of it. On average, two babies develop Group B Strep infection in the UK every day, one of whom dies every week and one survivor is left with long-term disability. The realisation that the infection is also largely preventable, through testing of the mother and administering antibiotics in labour, compounded the need for action further still.

“It’s unforgivable, one baby dying from preventable infection, it’s just not acceptable - and, as we know, there are many babies dying

"One baby dying from preventable infection, it’s just not acceptable"

from this,” says Jane.

“Once we realised how preventable the vast majority of Group B Strep infections were in newborn babies, we felt we had to do something to try and stop this from happening to others.”

From here, GBSS was born. With the support of Dr Robert Feldman, a microbiologist who was working on the development of a vaccine, a medical advisory panel was assembled to support the charity’s quest to make change. “The overarching objective of everything was to stop this happening to other people. It still is today,” says Jane.

The progress and frustration

Since the creation of GBSS, the impact of the charity, its team and volunteers has undeniably been seismic in terms of Group B Strep awareness.

From being almost unknown in 1996, now it is widely recognised among mothers and healthcare professionals. The inclusion of Group B Strep in the Care Competency Framework was another significant step forward, showing continued progress - although not always at the pace that is so urgently needed.

“When I look back to 1996, you realise the charity has made a real difference. There has been huge progress, but there is still more to do, clearly,” says Jane.

“Now, there won’t be an obstetrician, doctor, midwife or nurse involved in maternity and neonatal care who isn't aware of Group B Strep.

“We have national guidelines, both from the Royal College of Obstetricians and Gynaecologists and from NICE, that talk about how we can prevent these infections, and also talk about making sure that the pregnant women and people are informed about Group B Strep, which is hugely important.

“The training that will now be delivered as a result of the Care Competency Framework is absolutely huge. Group B Strep is on the map in a way now, in 2023, that we could never have even dreamed of back in 1996.”

But while the progress has been undoubtedly positive and significant, the fact it has taken, in some cases, 27 years is clearly a source of frustration.

“There are some mixed feelings at times,” says Jane.

“We will have a breakthrough, like

the Core Competency Framework or the RCOG guidelines in 2017 which recommended all pregnant women should be provided with a leaflet about Group B Strep, and the first response is ‘fantastic’ - but that’s followed by ‘what took you so long?’

“Group B Strep should've been a key part of training for all maternity and neonatal healthcare professionals for years, for decades. It shouldn't be news for 2023. But nevertheless, it’s hugely positive.” The issue of routine testing for expectant mothers has still not been resolved, despite almost three decades of calls for action and evidence from around the world of its efficacy.

While it has given rise to the GBS3 clinical trial - currently ongoing, and due to report back in 2025 - which is investigating the potential for routine testing of all pregnant women and involves 71 hospitals across England and Wales, the wait has been lengthy. Have things moved quickly enough on this vital matter? “No, of course they haven’t,” says Jane.

“In 1996, the US introduced the first national policy on Group B Strep, it >>

was a dual approach which basically said obstetricians could choose whether they offered risk-based antibiotics in labour based on risk factors, or antibiotics in labour based on testing. They established the risk of early-onset GBS infection was significantly lower among the babies of women who were tested, than among those in the risk-based group.

“We saw other countries adopting national screening antenatally for Group B Strep, much of Europe, America, Canada, Singapore, Hong Kong, to name a few - and we hoped, we thought, it wouldn’t take that long for the UK to do it too. “We didn’t think it would take this long, and it has been hugely frustrating. Things have moved forward massively, and there are kids who are fit and healthy who wouldn’t have been if everyone involved in the charity hadn’t pushed for change.

“But there are still too many babies developing Group B Strep infections that could, and should, have been prevented. And that’s unforgivable.”

A positive outlook

While change has taken a long time, the pace could well be picking up now, with a number of positive developments happening simultaneously.

In addition to the Care Competency Framework, and the GBS3 trial now funded and underway, the decadeslong efforts into the creation of a Group B Strep vaccine are also advancing.

“Work on a vaccine is progressing and it’s incredibly exciting,” says Jane.

“I was first told about a vaccine in 1996 and that it was ten to 15 years away, and there have been variations of ten to 15 years since then. But actually, there has been huge progress in about the last five years, which has been incredibly positive.

“For example, the World Health Organisation now has a roadmap to defeat meningitis by 2030, and GBS is one of the four key pathogens that it's addressing, and the only way we're going to be able to defeat Group B Strep meningitis, is with a vaccine.

“Giving antibiotics in labour is only ever

an interim measure, and it can make a big change, but it won't change things as much as a vaccine.

“So it's very exciting that we have the roadmap and pharmaceutical companies are working really hard on developing a vaccine. I can't wait.

“A vaccine will be able to prevent Group B strep infections that IV antibiotics in labour can't. IV antibiotics in labour can only prevent the early onset Group B Strep infections, those that develop in the first week of life.

“A maternal vaccine would be given in middle to late pregnancy, exactly when is not clear because we don't have it yet, but this could prevent stillbirths caused by Group B Strep. It could prevent the early onset infections, but also the late onset Group B Strep infections, which in the UK make up about a third of cases.

“The potential for this around the world is absolutely huge, it will reach places where testing and IV antibiotics frankly aren’t feasible. This vaccine will make a world of difference.

”While the vaccine would truly be the game-changing breakthrough, the positives come every day for GBSS -

giving their support and information to those families who need it; hearing about the positive impact of their work; inspiring others into action. Over the past 27 years, the little wins have often felt just as significant as the major breakthroughs.

Jane says: “Every time a health professional has been educated about Group B Strep, and has passed on the information to families. Every time things have moved forward, even just a bit. It has all been so valuable and every bit has been progress.

“I’m deeply proud of what together we have all achieved. Yes, I’d have liked it to have been quicker, but we have come such a long way and I’m really excited about what’s coming.”

*July marks GBSS Awareness Month - for more details about how you can lend your support to the campaign, or support the charity, visit gbss.org.uk.

Emma Doughty, head of medical negligence at Slater & Gordon law firm, said: “Jane Plumb and the charity Group B Strep Support have worked tirelessly over the years to minimise avoidable harm from GBSS and to support those affected by it.

“The promise of a vaccine for GBSS is a huge leap forward in ensuring the safety of babies and mothers.

“Getting to this point and raising awareness has been the life’s work of Jane Plumb, the charity and all of their supporters.

“We at Slater & Gordon are proud to support Jane and team in their work. “The progress they have made since 1996 has been frankly astounding and as a result, for so many families, the future now looks brighter.”

Contact Slater and Gordon on 0330 995 6823 or online.

Emma Doughty, head of medical negligence at Slater & Gordon

"The promise of a vaccine for GBSS is a huge leap forward in ensuring the safety of babies and mothers"

How a delay in treatment led to tragedy

Aftercontracting the Group B Strep infection, but not receiving medical attention soon enough, baby Bobby developed dyskinetic cerebral palsy and went on to experience a host of other complications during his short life. Tragically, he passed away aged only eight.

Here, we find out more about Bobby’s story, the signs of the infection, and how experts at Slater and Gordon are helping to support Bobby’s parents and other families who are impacted by such devastation

Bobby was born prematurely, remaining in hospital with his mum for three days so that his blood glucose levels could be monitored. Over their first few days at home,

Bobby’s mother was visited by midwives and healthcare workers to check on his progress, to ensure that he was feeding and putting on weight. Bobby’s mother kept a diary to note the length and frequency of his feeds, and 13 days after he was born recorded that he had not fed for about ten hours. She called her local birth centre and told them about Bobby’s disinterest in food, and that he was grizzly, cold and lethargic. Despite his symptoms, the birth centre didn’t ask Bobby’s mother to take him into the centre for a check up immediately, but told her to arrange an appointment for the following day. The following day, he still hadn’t fed. Concerned, his mother immediately took him to the local birth centre

where he was noted to be cold and grunting. An ambulance was called, and Bobby was taken to the Emergency Department where he was started on IV antibiotics.

A lumbar puncture was performed, and it was later confirmed Bobby had meningitis caused by Group B Strep (GBS) infection. As a result of his meningitis, Bobby went on to develop severe tetraplegic dyskinetic cerebral palsy.

Along with cerebral palsy, Bobby also had to live with visual impairment, infantile spasms, reflux, feeding difficulties, slow growth and obstructive sleep apnoea.

Tragically, Bobby passed away when he was just eight years old as a result of complications associated with the

severe tetraplegic dyskinetic cerebral palsy.

What were the signs and symptoms of Group B Strep?

Bobby had symptoms of GBS infection and typical early signs include the following:

-Grunting, noisy breathing, moaning, seems to be working hard to breathe when you look at the chest or tummy, or not breathing at all

-Being very sleepy or unresponsive Inconsolable crying

-Being unusually floppy

-Not feeding well or not keeping milk down

-A high or low temperature, and being hot or cold to the touch

-Changes in skin colour (including blotchy skin)

-An abnormally fast or slow heart rate or breathing rate

-Low blood pressure

-Low blood sugar

Early identification of the signs and symptoms of these infections are essential for early diagnosis and treatment. Most early-onset GBS infections can be prevented.

Group B Strep Support is carrying

out vital work to raise on the need for more widespread screening of GBS and the warning signs which medical staff should consider if there is a history of Group B strep.

Support from Slater and Gordon

To help Bobby’s family with their claim, the law firm’s expert team of medical negligence solicitors gained expert opinion from various medical specialists, in different medical fields including midwifery, neonatology and microbiology.

This helps to establish what treatments and processes should have been undertaken, and what may have happened to Bobby if he had been provided with the care and treatment that he needed.

When Bobby’s mother phoned the birth centre initially, she should have been told to bring him in immediately. Had this advice been given then, on balance, an ambulance would have been called and he would have been taken straight to hospital.

Bobby had a GBS infection and this would have been diagnosed within several hours after admission and primarily by lumbar puncture. Whilst tests were underway (lumbar

puncture, bloods, etc.) an infection would have been the working diagnosis and Bobby would have been started on broad spectrum IV antibiotics which would have started treating the GBS infection immediately.

These IV antibiotics would have been administered over 12 hours sooner, had Bobby’s mother been given the correct advice.

It is then likely that Bobby would not have gone on to develop severe tetraplegic dyskinetic cerebral palsy, because the bacteria would not have – by this point – breached the bloodbrain barrier.

Had the bacteria breached this barrier, it would not have had the opportunity to cause the extensive brain injury it did due to the antibiotic treatment.

For families impacted by GBS, where there are concerns over the quality or speed of medical care or treatment, Slater and Gordon has a team of experts able to give support, including solicitors with a special interest in GBS cases. To find out more, contact Slater and Gordon on 0330 041 5869 or at slatergordon.co.uk.

Every interaction is rehab: Innovative approaches for people with a brain injury

The renowned BIRT conference, run by the Disabilities Trust, is returning in September to bring together clinicians, academics and practitioners in the field of brain injury to discuss innovative models of rehab, and how we can achieve the best outcomes for people

Speakers include:

• Dr Zoe Fisher from Swansea Bay University Health Board, talking about Innovative Approaches to Community Neurorehabilitation

• Professor David Sharp, Imperial College, London who will be talking about Effects, Outcomes and Innovations in Traumatic Brain Injury.

Interactive workshop sessions include:

• Music therapy in neurorehabilitation

• Working with domestic abuse practitioners

• Neuropsychopharmacology

Almost 300 Recommendation Updates Made to the National Clinical Guideline for Stroke in the UK in 2023

The National Clinical Guideline for Stroke is an organisation that provides authoritative, evidencebased practice guidance that improves the quality of care for every adult who has had a stroke in the United Kingdom (UK) and Ireland regardless of age, gender, type of stroke, location, or any other feature. This year alone, there were almost three-hundred recommendation updates made to the guideline.

What’s New in the 2023 Edition?

Out of 538 recommendations in The National Clinical Guideline for Stroke, almost 300 have been updated, added, or endorsed since the previous 2016 edition. These revisions range across different categories including the Organisation of Stroke Services, Acute Care, Rehabilitation and Recovery, and Long-term Management and Secondary Prevention.

Following a stroke many individuals experience motor skill challenges and set motor recovery goals while in rehabilitation.

The National Clinical Guideline for Stroke now states that these individuals should receive a minimum of 3 hours of multidisciplinary therapy a day. These efforts must be delivered or supervised by a therapist or rehabilitation assistant focused on exercise, motor retraining and/ or functional practice within 5 out of 7 days. (4.2A) GripAble is a mobile rehab platform for individuals with impaired hand, wrist or arm movement. It delivers gamified therapy activities, digital assessment, and data-driven insights into a patient’s function. In a number of ways, GripAble is a valuable solution for therapists striving to deliver care in alignment with the guidelines.

Why Consistent, Repetitive Movements are Essential for Stroke Patients

High repetition movements that are personalised to the individual's training needs, supports a rehabilitation regime that can prepare someone for full function tasks.

High dose, intensive rehabilitation yields faster and greater recovery in stroke patients.

A recent study carried out by researchers at Imperial College indicates that the GripAble device can significantly increase the amount of upper limb training exercises stroke survivors are able to complete. In a clinical trial of 30 patients, researchers found that the device enabled on average 104 upper limb repetitions per day, whereas conventional therapy achieved 15 repetitions per day. Co-author of the study, Dr. Paul Bentley states “The findings from this clinical trial provide evidence that GripAble can be adopted to help further support stroke patients with severe arm weakness with their rehabilitation unsupervised.”

The GripAble device is highly sensitive to just 100 grams of pressure and can be used by most patients, even those with limited grip or movement. The device is calibrated and personalised to each user’s ability with real time feedback to help build motivation and engagement.

Therapists may issue a GripAble device to be used in a clinical or home environment and once the device is calibrated to the individual's ability, the GripAble games offer a natural progression as the patient works through the levels, meaning they can continue to work towards their goals with ‘light touch’ input, which is perfect for motivated patients.

How GripAble Can Help Therapists Utilize Their Time Effectively

Once a therapist has set the device parameters, therapeutic goals, and achievements specific to the individual, patients are able to continue their rehabilitation practice outside of therapy sessions at a time and place convenient to them.

Depending on availability and the size of a clinic, time is known to be one of the therapist's biggest hurdles.

For therapists, the GripAble platform can assist in time management by reducing administrative tasks through its real time reporting capabilities. Since the device tracks goals and measurements accurately, therapists can view the natural progression to then relay to the patients how much they need to practice outside of therapy time. In addition, GripAble

supports independent part practice between therapy sessions. This frees up the therapist to focus clinical time on more meaningful tasks, discharge planning and more.

How Telehealth Equipment Can Benefit Stroke Patients During Rehabilitation

According to revision 6.4D, stroke rehabilitation service providers should ensure that they have adequate equipment which includes the technology requirements that provide telerehabilitation to enable provision of the treatments recommended within this guideline.

Due to GripAble’s mobile compatibility, the device provides stroke patients with streamlined upper limb training opportunities and provides therapists the ability to better remotely track progress outside of therapy time. This gives therapists the tools to support even the most remote of patients through telerehabilitation.

GripAble Promotes Long Term Self-Management

Partial supervision is a bridge to self-management. This gives the patient an aspect of control during a therapy intervention, which can

increase motor learning. GripAble does this through arm’s length supervision, choice of game, choice of movement, and more. This control allows them to take charge of their own learning process, often resulting in more active involvement and increased effort invested in practice.

GripAble is highly accessible

GripAble is highly accessible to most patients at all times. Even an immobile patient can work on upper limb rehabilitation goals whilst in bed. GripAble is a ‘serious game’ which combines entertainment, attentional engagement, and problem-solving to challenge function and performance — built with cognition in mind. Extremely sensitive calibration means even severely physically affected patients can access it.

The GripAble platform provides objective and validated assessments, outcome measures, and a chart of progress to support clinical decision making.

GripAble is available for direct purchase in the United Kingdom, and is distributed by Medline in the United States. For more information on how GripAble can be used in your therapy practice please contact hello@gripable.co

Mental Capacity Assessmentswhat do we need to know?

Circle Case Management’s Mental Capacity Assessment service is led by critically acclaimed and industry leader, Dr. Abi Cheeseman who has been instructed on an extremely wide variety of assessments and states: “No two assessments are the same and each capacity question has to be addressed individually. P could have the capacity to make their own medical, housing or relationship decisions, but may lack capacity to make financial decisions, for example.”

Q: Can one mental capacity assessment be used to ask about two different aspects of P’s life?

A mental capacity assessment is a process used to determine an individual's ability to make specific decisions. There is no such thing as a ‘blanket’ or generic assessment for mental capacity.

While there may be significant overlap in the types of knowledge and understanding needed for different decisions, each decision or matter must be examined according to the unique circumstances of

that individual. There are several reasons why the assessment process may differ across different types of decisions:

1. Nature of the decision/activity: Managing finances and deciding whether to engage in sexual activity involve distinct types of decisionmaking and responsibilities. Assessing mental capacity for finances typically focuses on evaluating an individual's understanding of financial concepts, ability to manage money, paying bills, understand how to store and access money, make informed choices about investments, and protect themselves from financial exploitation. On the other hand, assessing mental capacity for engaging in sexual relations evaluates an individual's understanding of the nature and consequences of sexual activity, theirs and their prospective sexual partner’s right to say no, ability to consent or withhold consent, and their capacity to understand and protect themselves from potential harm or exploitation.

2. Legal and ethical considerations: The legal and ethical frameworks

surrounding financial decisions and sexual activity differ significantly. Laws and regulations governing financial transactions and contracts are complex and designed to protect individual’s financial interests.

Assessments related to financial capacity often consider an individual's ability to comprehend legal obligations, contractual terms, and financial risks.

In contrast, assessments related to sexual capacity involve considerations of consent, the law as it relates to sexual offences, personal autonomy, and potential risks to physical and emotional wellbeing.

3. Cultural and societal factors: Societal attitudes and cultural norms play a role in shaping the assessment of mental capacity. Different societies or cultures may have varying perspectives on financial decision-making and sexual activity. For instance, in some cultures, age, gender, or marital status may influence the evaluation of mental capacity in relation to sexual activity. These factors may not be as prominent in assessments related to financial capacity.

Q: How do you know how many assessments are needed?

Every enquiry to our MCA department comes through to Kirsten, MCA Technical Team Manager who initiates our triage process. Quite often we will need to request further information or gain clarity from the instructing Deputy, Solicitor or individual so that we can be certain as to what specific decisions are in question and how the opinion should be documented. Sometimes we are asked to assess for more than one decision, for example capacity to manage finances and testamentary capacity. It’s important that we uphold the principles of the Mental Capacity Act by ensuring that each decision is assessed separately, and that the client is provided with as much support as necessary to make their own decisions. This could include special adaptations or be as simple as providing the client with more time. We try to make the entire process as easy as possible for the client and the instructing party by being open and honest that more than one appointment may be required to ensure a robust and water-tight assessment. It is also important that assessments of capacity are not viewed as a ‘one off’. A person may fail to acquire, lose or regain capacity for a given matter as they go through their life. Mental capacity is something that needs to be re-visited and reviewed. There can be several reasons why someone might need more than one visit or appointment . Here are a few possible scenarios:

1. The nature of the client’s difficulties and making adjustments to provide maximal support to the client: Principle

2 of the MCA 2005 states that the person must be given all practical help and support to make their own decisions. In some cases, this could mean that information needs to be provided in different forms (pictures, signs, social stories) or that the person needs to have a period of education about a topic before their capacity can be fairly assessed. It could be that the person experiences extreme fatigue or a short attention span and can only engage in short sessions of 20-30 minutes. These are just some examples of why assessments cannot always be achieved in one appointment.

2. Fluctuating Capacity: In some

cases, the client may have a difficulty or condition that fluctuates over time, either as a core part of the condition or triggered by another factor, for example medication, environmental factors. Some clients may be susceptible to infections or other secondary health problems that serve to exacerbate pre-existing problems. Under these circumstances it is important to understand how the condition affects the person and the variation seen in presentation. This could well mean meeting the client over 2 or more sessions.

3. Progressive conditions: Some neurological conditions, such as Alzheimer's disease or vascular dementia cause a decline in cognitive abilities over time. In such cases, periodic assessments may be necessary to track changes in mental capacity and provide appropriate care and support.

4. Legal and financial matters: Mental capacity assessments are often conducted in legal and financial contexts to determine an individual's ability to make decisions related to their personal affairs, property, or finances. If the person's capacity is in question, multiple assessments may be carried out to gather comprehensive and updated information over time.

5. Rehabilitation and recovery: After a brain injury or stroke, individuals may undergo rehabilitation programs to regain cognitive abilities and functional skills. Multiple assessments can be conducted at different stages of the rehabilitation process to monitor progress, support the person to make their own decisions and to tailor treatment plans accordingly.

It's important to note that the need for multiple mental capacity assessments is determined on a case-by-case basis by MCA professionals.

Q: Who carries out mental capacity assessments?

A mental capacity assessor will usually be a Doctor, a health professional (clinical psychologist, occupational therapist, speech and language therapist, nurse) or a social care professional (social worker). The professionals conducting mental capacity assessments may have different areas of expertise and

training. For example, they may have a specialist clinical background in mental health services, learning disability or acquired brain injury. It is important that there is a good fit between the client and their particular clinical needs, and the person who is assessing capacity. This ensures the appropriate support is given and the assessor can understand how the person’s difficulties might affect their decision-making skills. Mental capacity assessments aim to evaluate an individual's ability to make informed decisions and engage in activities that align with their best interests and protect them from harm, regardless of the domain being assessed. Our MCA department continues to grow with a variety of assessments available throughout England and Wales. We have a range of professionals and experience within our assessors as no two assessments or clients are the same!

From setting up a Lasting Power of Attorney, to making a Will, to managing property and affairs, to marriage, sexual relations or to instruct solicitors in a claim for personal injury, we will work with you to establish exactly what is needed for your client. Please email MCA@circlecm.com to discuss your requirements.

Dr Abi Cheeseman

Meet Maria Morris

Circle Case Management’s multi-award-winning Expert Witness Panel is host to highly respected VRA Award winner Maria Morris, an Occupational Therapist, Vocational Case Manager and Expert Witness.

understand what people go through with pain or ongoing health symptoms and I understand the frustrations that come with a personal injury claim. I resumed expert work with Circle Case Management following completing updated training with Bond Solon approximately two years ago.

Vocational Rehabilitation and Occupational Therapy – do they cross over?

Or a young man attempting to get into an apprenticeship with a visual impairment and dyslexia who needed emotional support to cope with his disability adjustment and some assistive technology to help him.

Where did it all begin?

My career started as an Occupational Therapist in 1989. Since then I have gained extensive clinical experience, at times managing an extremely varied caseload, working with clients who have suffered life-changing injuries and illnesses impacting physical or mental health.

I have worked with thousands of clients and in many organisations including Government, injured military personnel and employees of the royal household.

How did that lead to becoming an Expert Witness?

My first expert work assisting other Occupational Therapist Experts began around twenty years ago.

I had suffered my own personal injury in the NHS caused by a faulty piece of equipment.

I was forced to change my career as a result. Using the funds I received from my personal injury claim, I set up a private practice. I wanted to help others overcome disability and injury. As I

I get asked often for a combination of the two expert reports! Recent cases included people needing some of my specialist skills to provide an opinion of how best to manage visual impairment, brain injury, complex orthopaedic injury and complex regional pain syndrome. Ages vary from a young adult at college, to adults who are working or looking to return to work plus those over retirement age still wanting to be active and live a purposeful life. My reports help people have an increased sense of purpose and live a more meaningful enjoyable life after their injury or incident. For instance, someone with a brain and neck injury. Client X. He was a new Father and was struggling as to how best to manage his symptoms of pain, fatigue, memory and multi-tasking needed at home and in his job. He was finding it challenging to stay in work and reduce arguments at home with his partner. His case settled and I understand the majority of the recommendations made have now been implemented. Working more from home, adjustments to his workstation, work deadlines, regular contact with his manager, help with childcare, help with getting back to hobbies and knowing better how to manage fatigue.

Or a retired woman who was very active not only suffering chronic pain from an arm injury but had several bereavements to cope with. She needed help with added transport as she cannot drive and lived in a rural area. She now has case management to help her coordinate appointments for rehabilitation, complete administrative tasks and manage an extensive wild meadow and garden which is her lasting legacy to the local community. My expert OT reports focus on care costs, following injury or incident, current needs and helping predict their future needs. To help people regain more functional independence for daily tasks, get added structure, activities or work into their week.

Occupational Therapist expert reports could be providing recommendations for equipment or support with things like reading or writing, gardening, general personal hygiene and care, meals, mobility at home or out in the community, socialising, maintaining a hobby, gardening, DIY and where they live. Vocational expert reports could include how best to return to studies, adjustments needed to their computer, office or work environment, identifying what type of work they can do if it’s not the same after their injury or incident or even identifying voluntary work prior to paid work as a steppingstone to paid work. It can include how their injuries has impacted on their finances or work potential or identify what hours of work they may be able to manage given their symptoms.

What would you say for anyone considering a career in Expert Witness services?

Get specific expert training. Read the rules required to be an expert. Each profession usually has advice or guidance as to how to be an expert or requirements. Bond Solon courses on how to be an expert witness and general expert report writing skills.

I am excited to be attending a new vocational expert specific course with Bond Solon. If anyone is interested get in touch with Circle Case Management on expert@circlecm.com, or Bond Solon directly.

What are your tips for becoming a successful Expert Witness?

My approach is to always think outside the box. Get creative in making an instant rapport with people so they relax and feel at ease. You get more useful information to write your expert reports that way. Litigation can be a stressful process. It’s important to put people at ease. Talk to peers in the expert field already. Work alongside another expert when starting out for a few cases to help them with a case to get an idea of what’s needed. Help them with the research or costings even though they write the final report.

Ensure you have a peer or colleague proofread reports, check any costs or complex material plus act as a sounding board for your opinions so you could justify them clearly if needed.

If you are questioned, stand in your expert power. Do not let anyone brow beat you. Back up your opinion with research and experience. Be willing to compromise if needed.

Use a good ergonomic workstation station for your comfort. Use voice dictation to save extensive typing or get administrative help to type reports in the correct format.

Keep reports as short and succinct as possible. If a solicitor, barrister or judge were to pick up the report with only 15-20 minutes to spare would they know where to find the information they need in each section easily? Or within a relevant appendix?

Break up the reports into text, tables and bullet points to ease reading. Have a clear and concise summary of your findings and opinions.

Know your boundaries and skillset. Only take a case if you feel competent to handle it.

If you do not enjoy writing reports or doing the detailed work, then avoid doing expert work. Expert work is not just about a perceived “easier way” to make money. It’s a highly skilled, responsible role and requires dedicated work. You need patience, perseverance, and accuracy.

Finally, remember the quote by Helen Hayes “The Expert at Anything was once a beginner” so don’t be afraid of trying it out to see if it works for you. And avoid the quote by Colin Powell who says, “Experts often have more data than judgement”.

www.circlecasemanagement.com

"I wanted to help others overcome disability and injury...I understand what people go through with pain or ongoing health symptoms"

Embracing digital record-keeping

Digitalisation is a huge shift for those of us working in health and social care.

While many are unlocking the benefits it can bring, for many others, the ‘unknown’ of adopting technology is forcing them to revise their traditional practice.

But with a Government target of 80 per cent of Care Quality Commission (CQC) accredited social care providers adopting digital care records by 2024, the use of technology across the whole sector is very much in the spotlight.

While adapting to digitalisation is perhaps not a natural choice for everyone, particularly those who have been in this sector for a long time, the benefits are numerous. Indeed, many providers we work with are discovering new positives of adopting technology on a daily basis. And in this fast-changing world, adopting digital can truly modernise operations for the benefit of the current and future workforce, ensuring real-time records are accessible by anyone who needs to access them, wherever they may be.

For health and social care providers, such digital record-keeping can be used in a client’s care - to ensure an integrated approach with other parties involved in their care and therapy - as well as being a vital part of their internal systems of staff record-keeping.

The CQC identifies that digital record keeping is advantageous over paper-based records in that it helps providers to capture information more easily, supports staff to respond more quickly, and enables

the sharing of information quickly, safely and securely.

Importantly, it highlights the fact that remote record-keeping can support staff - both care staff and those involved in back-office functions - to do their jobs more effectively and efficiently than ever before. We have supported many care companies who provide care staff to work with clients in their own home to use such technology to its best advantage.

While enabling an integrated approach between carers and others involved in a client’s care, from the provider’s perspective, the use of digital systems to help with staff provision has been invaluable. In ensuring timekeeping and setting up rotas, the remote access that digitalisation brings is a big asset. Wherever a carer is - whether on shift or in preparation for that - they can ensure they remain on top of their commitments. Their timekeeping can also be monitored by HR, the case manager or team leader in an instantly-accessible way, which ensures the client is receiving care when they need to be. It can also help with the planning of holidays and ensuring provision is made for times of absence.

Digitalisation can help providers to identify shifts they need to be covered, and staff can book themselves onto those shifts remotely. Most record systems can also integrate with payroll, ensuring this up-to-date information around attendance is factored in to salaries and people are paid fairly for the work they have done.

Payscales are traditionally difficult to negotiate - with several different scales at play for day or night shifts, sleeping or waking nights, bank holidays and weekends - but digital systems can offer some assistance here. In an increasingly digital society, where more people across all age groups are becoming adept with using smartphones and tablets than ever before, minimal training is needed, as most staff will already have knowledge of how to negotiate the technology - once they have learned how to use whichever record-keeping system the provider has chosen, the process should be a seamless one. Choosing a system can be challenging, particularly for those providers who are less adept with how to negotiate technology.

The prospect of digital record keeping can be daunting, and we understand that adding all the many factors which have been kept as paper-based records for so long to a computerised system can be off-putting.

But we are hearing from our clients how valuable the switch has been in enabling them to keep the accurate and up-to-date records that are needed, particularly with the sector-wide focus on shifting to digitalisation. Undoubtedly, the future of health and social care is digital. And while it may be daunting, by embracing it now, you are helping to create a sustainable future for your organisation, and begin a journey which your staff will join you on.

www.embracehr.co.uk

Digitalisation is becoming a fast-growing area in care, with providers adopting technology to help deliver the best possible care for clients - but its application can also be crucial in back-office record keeping and in better supporting staff. Here, Cecily Lalloo, managing director of Embrace HR, independent HR specialist in care sector support, discusses how digital record-keeping can support providers in vital back office functions to ensure their processes are more streamlined than ever before

The role of arts therapy in exploring sexuality and relationships among clients with impaired mental capacity

By Daniel Thomas, managing director, Chroma

Asprofessionals and as people, we need to become comfortable talking about sex and relationships because our silence on this subject heavily impacts the lives of those living with a brain injury who may be considered to have impaired ‘mental capacity’. And as therapists, these issues are becoming more and more a part of our sessions, and we need better, more transparent, approaches to deal with them.

This is a grey area. All those involved in a client’s case, including court deputies and case managers, need greater awareness around this complex issue as our level of understanding affects their lives. Clients want, need and have a right to access appropriate sexual experiences and interactions, whether that be alone or with someone else. Guidance is required to enable people to live as much of a full life as possible.

But of course, there is a safeguarding issue, as stats indicate people with cognitive or executive function issues are seven times more likely to suffer sexual abuse than anyone else, so there is a clear need for protection and safeguarding for vulnerable people. Issues continue to arise surrounding the role of the case managers and court deputies in such cases, as their aim is to help people stay empowered whilst being protected. I was told of a 25-year-

old woman who suffered a TBI, who was mostly bed-bound due to her condition and was also obese as a result. She requested that the support worker purchase a vibrator for her. The woman had full mental capacity. The support team initially flagged this as a safeguarding issue to the case manager, who confirmed that it certainly was not a safeguarding issue. The support team did not know what to do with the woman’s request and felt very uncomfortable, even though the woman would be using the vibrator alone, in her own bedroom etc. Given her presentation/ condition, it was likely that using the vibrator was going to provide pleasure and relaxation, and potentially be one of the only things that would bring her a sense of wellbeing. This is just one example of many that highlight the need for a better approach towards the subject. Personalised care means supporting each individual as an individual. The right interventions can help to ease these seemingly uncomfortable conversations/situations.

Implementing the creative arts therapies into a person’s case may offer an effective means to help case managers support their clients around consent and relationships, and could help care staff have conversations about the impact of decisions made on the client’s behalf concerning their lives.

Dramatherapists, for instance, can use role-play to help clients understand the feelings of others as well as how their actions may affect those around them, along with providing a means to explore/discuss what it may feel like to start a relationship with someone. Art Therapists can help clients to understand how the world may see them, or how they may see themselves, helping the client’s level of insight. This can be in the context of their personal safety and their possible vulnerability in the world around relationships. The Journal of Head Trauma Rehabilitation reported, “Dramatherapy helps people with TBI’s explore and communicate their feelings and desires related to sexuality and relationships."1 Participants reported feeling more comfortable discussing these topics after engaging in dramatherapy.

For example, a 19-year-old male with developmental delay was referred by their parent to Chroma to gain a better understanding about boundaries in relationships. He enjoyed fantasy stories, so the dramatherapist chose this as a focus in treatment. The client grew to understand issues by identifying with the characters in the situation because stories give access to ideas and images not easily spoken about through language.

The American Journal of Occupational Therapy also found that Art Therapy helps individuals with TBIs express their emotions and improve their self-esteem. Participants reported having more positive experiences in their relationships ².

A 24-year-old woman who developed an Acquired Brain Injury (ABI) was referred to Art Therapy to explore areas of her life that were important to her – including relationships, family and the future. Art Therapy provided a therapeutic space to think about issues around sex and relationships, which may include loneliness. Having a boyfriend and starting a family was a strong wish for her. With diminished inhibition, she would often ask someone “Do you want to have sex?” Art Therapy explored the space before this question – getting to know someone, and rejection, as well as helped her to process her frustrations around the safety that her support staff maintained.

According to the Care Quality Commission (CQC)

“Sexuality encompasses a person’s gender identity, body image and sexual desires and experiences. This means people can have needs relating to their sexuality, regardless of their age, mental capacity, or personal history.”

Baker (2001) also stated that, with regards to sex, there was a danger that the imposition of a higher standard for mental capacity may discriminate against people with a mental impairment³. And yet, mental capacity is at the forefront of this issue. The Creative Arts Therapies can help clients improve cognitive function whilst engaging in a fun, creative activity. They provide a non-threatening, safe

environment for the client to process their thoughts and feelings, whilst gaining a better understanding of their situation.

Creative Arts Therapies are able to highlight everyday abilities through creativity. Dramatherapists and art therapists can use their medium to help clients understand the sequence of, for example, setting up a date; starting a conversation with someone through role-play, or through creating art using a learned sequence. Both means have the ability to discover if the client has the capacity to learn and if they do, the use of Arts Therapies in this context gives hope to the clients who need it, in that intimacy may be a possibility for them in their future.

Arts therapists need to be prepared to face these situations, and Chroma’s continual professional training ensures our therapists are ready for the challenge. At this point in time, there is no clear cut resolution but, the use of arts therapies in cases such as these, does help case managers and court deputies better determine a balance between empowerment and protection which will hopefully help many people considered to have impaired mental capacity, to lead healthy, intimate lives.

References:

Levy, J. M., DePompei, R., Gillette, Y., & Geist, R. (2016). Exploring sexual identity, intimacy, and relationships after traumatic brain injury: A dramatic exploration. Journal of Head Trauma Rehabilitation, 31 (2), E42-E48.

Sohlberg M. M., McLaughlin, K.A., Pavese, A., Heidrich, A., & Posner, M.I. (2007). Evaluation of attention process training and brain injury education in persons with acquired brain injury. Journal of Clinical and Experimental Neuropsychology, 29 (2), 151-165. Baker, J., & Menken, M. (2001). Autonomy, the good life, and controversial choices. Cambridge Quarterly of Healthcare Ethics, 10 (1), 55-64.

How the law can be a force for good for brain injury survivors

Jane Lynch, head of clinical negligence and complex injury and a specialist in brain injuries at law firm Prosperity Law Solicitors, discusses the importance of appointing a lawyer with specialism in handling brain injury claims to secure the best possible outcomes for clients

Please introduce us to Prosperity Law Solicitors.

Prosperity Law is a young firm and has a wealth of experienced, high calibre, leading lawyers. The firm has grown rapidly and has offices in London, Manchester and Liverpool. We operate across the whole of England and Wales. We offer a range of services including serious and complex injury claims, clinical negligence, personal injury, notary public, commercial, conveyancing, employment, family, trusts and wills.

We pride ourselves on focusing on our clients’ needs with empathy and compassion obtaining the best outcome, always seeking to exceed their expectations.

We proudly support numerous local and national charities, including Manchester Mind and Macmillan Cancer Support and we lead by example. In fact, our Managing Partner Edward Smethurst was awarded the Cancer Research UK Flame of Hope Award in 2020, in recognition of his fundraising

activities. Edward has raised, in total, over £250,000 for Cancer Research. He’s an incredible example for the firm.

How long have you worked in the specialist field of brain injury?

I have been a specialist in this area for over 27 years since I qualified in 1996. I became a partner very early in my career in the City of London firm, Pritchard Englefield who had merged with Pannone & Partners regarded as pioneers in specialising in serious injury work and multiparty/disaster litigation. I have been working in the field of brain injury ever since. My expertise includes working with birth injuries where babies have suffered brain injury as a result. I am accredited as a specialist by the Law Society. I have shared my knowledge with the health sector as a medico-legal trainer for the NHS and private care providers. I have spoken at conferences worldwide and am highly regarded in my field. I am the author of award winning

series of medico-legal books written for health professions. I have written many articles for medical journals including neurological publications. and I also put helpful articles on our website.

What do you believe makes you stand out in this area?

My significant experience in head injuries sets us apart from competitors. I have achieved millions of pounds in compensation for serious brain injury claims for adults and children. I have dealt with a wide range of brain injuries resulting in minor and catastrophic injuries as a result of accidents and medical mistakes. I also have particular expertise in birth injury claims resulting in brain injury often resulting in acquired cerebral palsy. It is essential to put rehabilitation in place at the earliest opportunity to achieve the best outcome for clients. This may include a range of care packages including treatment, support, aids and equipment and adaptions to the home. I am adept

Jane Lynch, head of clinical negligence at Prosperity Law Solicitors

at identifying that symptoms can be masked sometimes unintentionally and dealing with this to ensure it does not impact on the clients’ needs and ultimate settlement.

Why would a client appoint you ahead of your competitors?

We are a niche practice specialising in serious brain injury. We offer a personal service unlike large firms who often delegate to junior staff under supervision. Our senior experts handle the cases personally. They gain in-depth knowledge of the client, the circumstances and their needs. I am regularly complemented by my clients for my thoroughness and diligence, never shying away from issues, taking time to explain complex medical and legal issues in a way that they understand.

I have genuine empathy for clients. I understand their needs, knowing what to say and what not to say. My clients describe me as ‘caring, approachable and empathetic, but fights her cases with tenacity’.

The legal process can be daunting for a client and their families. It is important to consider the impact this can have on the wider family and those supporting the client. I strive to ensure they are being supported and reassure them the client is receiving the treatment and care they require whilst being clear about the legal process and hand holding them through it.

What is unique about a brain injury claim? Does it differ from a standard personal injury claim?

Brain injury claims are very different from other claims. It requires a very skilled solicitor to illicit the correct information. Often clients present in a way where injury is not obvious. They will sometimes be adept at masking the consequences of a brain injury through valour, denial or embarrassment often claiming they can do something well when they cannot.

Even when they are assessed by an expert their presentation can be misleading. They can present well when they are viewed in a short assessment offering the most positive responses and usually when they are brighter such as at the beginning of the day. A very different picture would often emerge if they were tired at the end of a day, fatigue can have a major impact. As an experienced brain injury specialist,

I am aware of these inconsistencies and ensure the experts are fully informed of the real issues and measures are taken to ensure the full picture is taken into account. Often those who have suffered a brain injury don’t look any different to how they looked before but the difference can be significant. It can often impact on cognitive ability, personality and mood changes and behaviour, including inhibitions. Clients can have many difficulties including lack of concentration, memory loss, inability to organise and have difficulty communicating. There are other underlying issues which can impact such as fatigue, pain, vision issues and loss of taste and smell. Some clients can develop mental health issues such as depression.

Some clients function well day to day, whilst others may not function well and do not have capacity to manage their legal or financial affairs. In these circumstances others will need to make decision on their behalf and assist them with the legal process. There may also be some involvement with Court of Protection.

If you would like advice, please contact Jane Lynch at Prosperity Law on 0151 909 9122 or email her at Jane@ProsperityLaw.com

Often those who have suffered a brain injury don’t look any different to how they looked before

Good organisation, structure and teamwork are just as crucial to delivering effective personcentred care as clinical expertise. This is the view of Laura Richardson-Cheater, director and owner of Richardson Care in Northampton.

Richardson Care has six specialist residential services for adults with acquired brain injury or learning disabilities and complex needs. It is a family-owned and run business and was established in 1989. It has grown steadily over the last 34 years, but still retains its unique family and homely environment.

Holistic approach

Laura Richardson-Cheater says: “There are so many different elements to providing person-centred care and they are all underpinned by good management, structure and teamwork. At Richardson Care, we have a high-calibre team of specialist neuro therapists who work directly with our service users. The disciplines include occupational therapy, speech and language therapy, physiotherapy, psychiatry and psychology. The multi-disciplinary team (MDT) also includes the managers of our residential services. They meet on a weekly basis to review care plans and to discuss any changes, additional needs or issues that have arisen. They share their knowledge and experience to find solutions and deliver holistic care. “We support individuals who have complex needs, so the outcome of their therapies and their wellbeing is influenced by many factors. For example; mood, engagement, motivation, sleep, nutrition and environment. These vary according to each individual. Therefore, it takes a team of people to ensure the best outcome for each service user.”

Care teams

Laura continues: “Our care and activity support workers also work in teams. There are a number of teams for each service, depending on the size of the home. Each team is run by a senior support worker, and this additional level of staffing allows the Homes Managers to better manage the service overall. “In addition, we have a clinical head, who is

responsible for the overall delivery of clinical care and a head of care, who is responsible for the operational side of the organisation.

Putting the service user first

Good structure and organisation doesn’t mean that routines are imposed upon the service users. For example, they are not all required to get up at the same time, or to have breakfast at the same time, etc. All decisions are made in consultation with the service users. Although some of them are non-verbal, Richardson Care uses different techniques to help them communicate and always puts their views first. “We have always aimed to create an environment that feels like home. We take a lot of care over the physical environment as well as the atmosphere with the home. That comes down to the people we employ, the service users we admit to each service and the culture of the organisation”, concludes Laura.

For more information call 01604 792166 or visit www.richardsoncares.co.uk

“We have always aimed to create an environment that feels like home"

Laura Richardson-Cheater, director and owner of Richardson Care, Northampton

The need to be mindful of the cognitive symptoms of Huntington’s

#MindfulOfHuntingtons is the theme of this year’s Huntington’s Awareness campaign, with emphasis placed on the need for better recognition of cognitive symptoms, and greater understanding of the impact of these symptoms on the lives of individuals and families. Here, consultant psychiatrist Dr Nadeem Mazi-Kotwal and forensic and clinical psychologist Dr Vincent Harding, both HD specialists at St Andrew’s Healthcare, discuss the challenges HD presents and ways in which effective support can be offered

As a neurodegenerative condition, HD has both a physical and mental impact on people which will worsen over time. But it remains the physical symptoms that are most recognisable, and its cognitive manifestation can be much less expected.

“It’s an illness that creeps up, in many ways,” says Dr Nadeem MaziKotwal.

“The diagnosis of the illness as HD is made when the person starts showing the motor symptoms - but there are changes happening in the person’s personality, thinking and cognitive processes much before that.

“Subtle changes in personality, changes in the quality of life and the way the person makes sense of the information that is reaching the brain, can all have great impact on the life of that person and the life of their family.”

“It can be very difficult, and there is limited specialist provision for people with HD,” says Dr Vincent Harding.

“Awareness can be low, even among healthcare professionals, so there can be many challenges for the person and their family in accessing the specialist, multi-disciplinary support they need.

“And in terms of the cognitive symptoms, they can be even more difficult to recognise, and potentially do go unnoticed for longer. This can have a significant impact on that

person’s quality of life.”

The cognitive impact

While Huntington’s Disease (HD) remains a condition which is not widely recognised, its symptoms are most easily distinguished by their physical manifestation. Its cognitive impact is much less obvious and symptoms can be very subtle, particularly in the early stages. Behavioural problems, functional challenges and difficulties in continuing with basic daily tasks can all be distressing for the person involved, and also for their families and loved ones in understanding how to support them.

HD is a relatively rare condition, with an estimated 8,000 people in the UK living with the disease - caused by a ‘faulty’ gene and passed through generations of familiesand for many people, little is known about it.

However, while the physical symptoms - movement and motor problems - are generally easier to spot, the psychological impact can begin to take hold from a very early stage and affect a person’s

Dr Vincent Harding

life in many ways. The ability to work, maintain a social life and continue with basic everyday tasks can all be jeopardised by the cognitive decline resulting from HD. As well as the depression and significant mental health decline that can be associated with HD, the impact can be wide-ranging and, particularly in the early stages, often very subtle, says Dr Mazi-Kotwal.

“We see the person’s ability to process information progressively worsen. A person who may have been capable of doing something in the past may take substantially longer periods of time to do the same thing. This has a huge impact on their ability to complete day-today tasks,” he says.

“We also see effects on a person’s energy drive and motivation levels. People lose interest, and this is not because of clinical depression or any other mental illness, it is the inner ability to motivate oneself and be aware of the reward at the end of a particular activity. That reward and

driving mechanism is compromised as a result of HD.

“Our behaviour is very much modulated by the frontal lobe, which enables us to behave in a way that is socially and culturally appropriate, but that is gradually lost in HD.

more pronounced over time, says Dr Harding.

“The cognitive symptoms tend to progress as HD advances, which can contribute to impaired ability to work and perform activities of daily living. That has an impact on the person, but also on those supporting them,” he says.

“A problem we see is that there is still limited recognition of HD, and an ongoing need to raise the profile and awareness of all symptoms, including and perhaps particularly the cognitive symptoms.”

Risk of misdiagnosis

Behaviour may become more disinhibited, people may do things impulsively, without thinking through the consequences.

“And if you put all of this together, what you see is a change in personality and thinking, problem solving, and generally, changes in the ability of the person to function as they did previously.”

And those cognitive changes become

With a limited awareness of HD, where the condition has not yet been formally diagnosed, there is a risk of cognitive symptoms being attributed to another condition.

“We often see patients with HD being misdiagnosed with all types of different things. We have seen cases where patients have been diagnosed with emotionally unstable personality disorders, or different

While the physical symptoms are easier to spot, the psychological impact can begin to take hold from a very early stage

types of personality disorders, when in fact, it is the changes due to HD driving this,” says Dr Mazi-Kotwal.

“People with HD are at higher risk of developing all mental health disorders, from anxiety to full blown psychosis, and the proportion of people with HD developing a mental health issue is substantially higher than amongst the general population. “HD may co-exist, but whilst the mental health symptoms may be treated, it is also the underlying illness which needs to be addressed and treated.”

As well as restricting a person’s access to the support that they need, misdiagnosis can also have profound longer-term consequences.

“In the short term, treatments are often directed towards the problem symptoms. So if there are sleep problems or aggression, there may be therapies and treatments modulated for that in terms of medication or anger management - but without the awareness that this is fuelled by HD, the effectiveness of these is questionable,” says Dr MaziKotwal.

“By not recognising HD and the mechanisms required to support health, input that could be available from professionals or organisations like the Huntington’s Disease Association is often delayed which can be detrimental mentally and physically for the person with HD.

“With HD, the priority is to know about the illness as quickly as possible, to plan the future, make decisions about advanced care planning and the care and support that a person wants, whether they would want to be resuscitated, and so on. The

earlier we do this, the greater chance the person has to think about this and make decisions while they have the capacity to do so.

“If a diagnosis is delayed, we risk missing the critical time for a person to be able to consider all the options and in a way deprive the person of making decisions for their future care.”

Dr Harding believes awareness plays a key role in this, which is a vital part of the #MindfulOfHuntingtons campaign.

“The general public and even healthcare professionals are not fully aware of this condition and how it manifests and there is a need to raise awareness, particularly among health professionals.” he says.

Dr Mazi-Kotwal also believes recognition among people with HD themselves of their symptoms can be crucial.

“A major barrier we sometimes face is with the person who is experiencing these symptoms and it can be difficult for them to acknowledging that there is an issue that they need help with,” he says.

“This can be quite surprising, especially as some of our patients are almost Wikipedias of the illness, they can tell you

everything about it - but they really struggle to see how it is affecting them personally.

“Greater awareness of the symptoms and the cognitive impact people can expect to face is also a part of this, so they recognise that this is a way in which HD is affecting them.”

Family involvement and coproduction

For families, HD can be something they are aware is genetic and therefore may know or suspect their loved one has the condition. For others, it can be a devastating reality to discover through a diagnosis. But in any event, the manifestation of symptoms and changes in their loved one can be very hard to cope with.

“This can be a very difficult time for whole families, seeing the way the person is changing and how they are now functioning differently,” says Dr Harding.

Dr Mazi-Kotwal continues: “It can cause concern with family members who see their loved one now not interested or not willing to able to complete tasks they previously could.

“Also, the changes in personality and the way a person reacts to family members can be quite

Dr Nadeem Mazi-Kotwal

As well as restricting a person’s access to the support that they need, misdiagnosis can have profound longer-term consequences

different to their previous demeanour. Families know this person has HD, but interactions can be very personal, comments can be quite hurtful.

“It is of course the HD modulating rather than the innate wish of the person to behave that way - but that can be difficult for a family to understand.”

For St Andrew’s Healthcare, families and friends are a priority in the care they contribute to with their relative or friend living with HD. Mindful of the impact this has on them too, the team always seek to involve families as friends as equal ‘partners in care’ from the earliest opportunity, both for the best possible delivery of care for the patient, as well as enabling families and friends to find appropriate support themselves.

“We work closely alongside families and friends and the patient, and use the triangle of care approach,” says Dr Harding.

“It’s a biopsychosocial approach, where we see the whole personseeing everything that makes that person, from the changes in the brain, their health, their background, personality, their social circle, family, and appreciating the importance of all of those things, all in conjunction with each other.

“Co-production is something that is very important to the way we work. We develop a robust care plan that a person has been fully part of, they’ve co-produced it with us, and we will always seek family involvement where they are involved.

“We want to be able to anticipate a person’s needs and wants in advance

and to meet them as quickly as possible, so as soon as somebody comes to us, we’re reaching out to their families and friends and, where the patient consents, we’ll send out a comprehensive assessment form to help inform our care plans and conversations with that person.” Family involvement is crucial to the work of the team in delivering the person-centred care that is central to the St Andrew’s approach, and this is reflected in the hospital’s support and pledge to John’s Campaign, which promotes the value of family and friends being actively involved in a person’s care.

“The information we gather is the foundation on which we base our interventions, and it informs our neuropsychological formulation to address the difficulties that a person is presenting with when they first come to us,” says Dr Mazi-Kotwal. “The interventions we plan as a result of this information from family and friends also help us to deliver our therapeutic programme.

“It makes a big difference having this as a starting point and knowing we can provide truly personalised care which is in tune with what the person’s preferences are or would have been. Providing care is much easier this way, as compared to a person who does not have the input from friends and family who can inform and contribute to their care.”

Dr Harding has led research at St Andrew’s which gathered the experiences of healthcare assistants and registered nurses working with people with HD, to help inform future care and make their approach even

more centred around co-production. “It really is about us working with families and friends as equal partners in care,” says Dr Harding.

“It’s about respecting the knowledge they bring to the situation, and what they know about that person which could help improve experiences and outcomes for everybody involved.”

Clarity, certainty and structure

For someone living with HD, the realisation that basic daily routines are slipping, tasks they could previously carry out independently are becoming more difficult, and the likelihood of them needing support is increasing, is a very difficult reality to face.

But while symptoms are unique to each individual, and the speed and severity with which the onset comes differs vastly, living well with HD is absolutely possible and achievableand the potential to do so becomes more likely by putting structures in place as early as possible.

“It’s about us being clear, concise and concrete in the interactions we have with people,” says Dr Harding.

“We need to provide some form of clear structure, but we need to allow for flexibility as well. It’s about understanding the individual as a person before the condition, but equally making sense of the changes we see through the lens of HD and being able to adapt to changing needs with that person.

“We need to develop a clear care plan with sets of shared expectations, which allow for choice but equally give the structure and support they need. Because as HD progresses, we see a

person who is much less able to plan, problem solve, reason and structure their day independently. So they’ll often become more reliant on those around them to support with those things.”

“There is a saying we use - ‘If you have seen one person with HD, then you have seen one person with HD’,” says Dr Mazi-Kotwal.

“Every case is very different, it is so unique in the way it presents. But, generally speaking, people who do well in managing their symptoms and the decline of functional abilities appear to be those who have built up a routine before the onset of HD symptoms.

“Well-established routines of exercising, breakfast, meal times, bedtimes, help people to maintain consistency in their day when the ability to plan and logically problem solve is declining.

“Some of the work we do is around education and relaying the importance of building up these routines, and equally building on existing routines and attaching other activities to that. That can often help, to add something to what a person is already doing, rather than to re-start completely.”

Patience is also a vital tool in being able to effectively support a patient.

“The idea of being able to hurry up and wait, a phrase that Jimmy Pollard uses, is important,” says Dr Harding.

“We need to be able to hurry up in terms of meeting people's needs and wants in a timely way. But equally, we need to be able to slow things down and put the brakes on when we're interacting with people; making sure that we are clear, concise and concrete in our communications, and that we give the person time to process and respond before we repeat or rephrase.

The use of innovations, or assistive and smart technology, can also be vital in helping to preserve a person’s independence and enable them to carry out their routines.

“If you take memory as an example, recognition memory is often better than memory recall,” says Dr Harding.

“We can therefore keep information clear, concise, and concrete, with clear and consistent expectations and opportunities for consistent repetition to support learning. We might also be using verbal reminders, or written or pictorial cues, such as calendars, diaries, menus, timetables etcetera.

“To support attention and concentration, we would be reducing distractions in the environment wherever possible, breaking tasks down into smaller parts, keeping instructions short and specific, and giving the person adequate time to process and respond, ensuring that we don’t repeat or rephrase during this processing time.”

Dr Mazi-Kotwal continues: “Similarly, adding in the technologies that are available to aid functioning and cognitive processes, such as pill dispensers, electronic diaries, smartphone reminders, specific apps and software that families can populate and add in alert mechanisms.

“Each individual has their own needs and may respond differently to different ways of supporting that, but between all of the options available, we can often find ways of improving functioning or reducing risk.”

The need for specialist care

St Andrew’s is one of only a handful of specialist care providers for HD patients nationally, meaning people from across the country are admitted to its Northampton site to be supported by its expert team. While its resources and multidisciplinary team ensure patients receive the optimum care and support in a timely and co-ordinated manner, sadly that is all too often not the case in the NHS or wider community.

Patients can often fall between the cracks of different departments or services, with the lack of awareness of HD also feeding in to the problems in referring to the best provider. Research from the Huntington’s Disease Association which reveals that more than half of HD patients are declined mental health support due to their diagnosis also points to the lack of clarity in where patients can access support.

“Patients with HD often fall between different services,” says Dr MaziKotwal.

“Often the motor symptoms may be diagnosed by neurologists. And there are significant mental health symptoms that may have been addressed by GP or primary care, mental health services or secondary health mental services.

“But once there is this diagnosis of HD, there are often difficulties in accessing services. While neurology may think a person needs mostly psychiatry, mental health services are generally reluctant to engage, as it is seen as an organic neurological illness rather than a core mental illness.

“And this tussle between services leaves patients without the care they need. And often, the specialist neuropsychiatry services, with the amalgamation of neurology and psychiatry or mental health services, are very rare, and perhaps only available on a consultative basis in tertiary centres.”

The breadth of different specialisms a person living with HD will need can also present logistical problems. “A person with HD may have cognitive difficulties, neurological difficulties, communication difficulties, perhaps cannot speak or articulate properly, cannot eat or drink properly, may be losing weight,” says Dr Mazi-Kotwal.

“So we are bringing in neurologists, mental health services, speech and language therapists, physiotherapists, occupational therapists, nutritionists, GPs - and all of these come with a waiting list. These are not services that see a person all together, they’re all piecemeal.

“It becomes quite a challenge accessing all these services in the community.”

But at St Andrew’s, resources which can be so difficult to access in the community and subject to delay, are all found on site and delivered by an in-house MDT.

“That’s one of the main benefits provided by somewhere like St Andrew’s,” says Dr Harding.

“We have that wraparound support

from our own full-time MDT, who can meet that person at the earliest opportunity and assess that person’s needs and formulate risk and need and intervene accordingly.

“We identify what a person’s needs

are and track them as they change over time, so we can modify the environment and our approach. There are many ways in which we can do that, all of which are led by the person.

“Wherever possible, we will work directly with the person themselves, but as the disease progresses, increasingly it’s about indirect systemic work through the MDT. Crucially, the work that begins from the point of admission and involves the patient and their friends and families, that person-centred care remains at the heart of absolutely everything we do.”

To find out more, please visit www.stah.org.

"Every case is very different. It is so unique in the way it presents"

Recovering at home: A stroke client’s journey with Cavendish Homecare

At Cavendish Homecare, we recognise that the recovery journey following a stroke is unique and care must be tailored accordingly. Many stroke clients choose the option of receiving care at home, as it allows them to remain in a familiar environment with access to caregivers, family, and friends. This case study describes the discharge from rehabilitation unit following a stroke, highlighting how Cavendish Homecare’s client management facilitated this transition and recovery.

Our client’s journey

The client in her 80s suffered a left middle cerebral artery (MCA) infarct, which resulted in impaired communication, perception, and voluntary movements. The client experienced contralateral hemiplegia, loss of sensation on the right side, neglect of the right visual field, and global aphasia. The client was admitted to Accident & Emergency and then taken to an acute stroke unit where they were managed for 12 weeks, followed by four weeks of intensive rehabilitation. Initially, the client

faced several challenges adjusting to being at home after the stroke. These included eating and drinking difficulties, immobility, sleep apnea, poor vision in one eye, double incontinence, and challenges in communication.

Our involvement and approach

From the outset of the enquiry, our specialist neurological nurse manager played a vital role. Using her knowledge and experience in the field of neurological injuries, she developed a care package that involved a dedicated team of highly skilled carers that provided round-the-clock care. The client’s self-motivation and interaction with carers, family and friends, combined with the implementation of a high standard of medical support, enhanced the stroke recovery. The comprehensive care package took a holistic approach and addressed the

following areas: management of motor deficits and physical fitness, communication and sight, support with personal care, continence care, eating and drinking, social, recreation and leisure activities.

Collaboration with the multidisciplinary team

Our team collaborated closely with the client’s multidisciplinary team, to ensure a comprehensive and integrated approach was implemented. The team consisted of a range of healthcare professionals including: dietician, speech and language therapist (SLT), neuro-rehabilitation physiotherapist, neuro-rehabilitation occupational therapist, wheelchair services team, district nurses, podiatrist, nutrition team and pharmacist.

Management of motor deficits and physical fitness

Our carers played a crucial role in assisting with all movement and handling needs, including using a full-body sling for hoisting during personal care and transitioning to and from bed.

"Our team collaborated closely with the client’s multidisciplinary team to ensure a comprehensive and integrated approach"

Nurse Manager at Cavendish Homecare

Communication and sight

The client experienced hearing difficulties, receptive aphasia, and short-term memory challenges following the stroke. Our carers engaged in full conversations with the client, being mindful of the client's vision impairment and hearing loss due to right-side neglect from the stroke. Being aware of the adaptations required, this improved the emotional and mental well-being of the client.

Support with personal care

As part of our comprehensive support, our carers supported the client with personal care, including activities such as combing their hair and brushing their teeth. Our approach prioritised empowering the client to maintain their personal routines while receiving the necessary support.

Continence care

We provided support to the client who experienced challenges with bladder and bowel control, leading to difficulties in recognising and interpreting continence signals. To address this, the nurse manager implemented a continence

rehabilitation programme aimed at regaining control.

Eating and drinking

Through consultation with carers, the nurse manager and the client’s family, the team developed a dietary plan in line with guidelines which was prepared by the speech and language therapist (SALT). The client showed significant progress in eating and drinking, leading to a reduction in PEG feed and successful management of three meals a day with oral fluids. In addition, our nurse manager facilitated PEG feed theory training for the carers, followed by practical training conducted in the client’s home by the nutrition team. This ensured that the carers were equipped with the necessary knowledge and skills to confidently and safely handle PEG feeding.

Social recreation and leisure activities

The client had a daily activity plan which our carers worked on in conjunction with the family. It was important to also take advice from family to develop a schedule that supported the interests and hobbies of our client. This included:

-trips to the supermarket

-involvement in helping them to choose food for their meals

-daily exercise plan using exercises that were recommended by the rehabilitation centre

-watering plants

-going for walks in the nearby park

-sitting in the garden

Since discharge from the rehabilitation centre, the client settled back into the comfort of their home surrounded by a loving family, friends and carers. Through seamless collaboration with the multidisciplinary team and close monitoring of the client’s progress, our team successfully managed and coordinated the client’s care, alleviating stress for both the client and their family. As a result, our client continues to make a good recovery, benefitting from the expertise and support provided by our dedicated team.

To find out more about our services, contact us and speak with a nurse manager who can guide you through the process to achieve care at home for your family or friends.

Email info@cavendishhomecare.com or visit cavendishhomecare.com. Tel: +4402030085210.

Ongoing development of an esteemed neuro-rehab provider

Murdostoun Brain Injury Rehabilitation and Neurological Care Centre has built a reputation for supporting patients across Scotland with specialist neuro-rehab and care. With the appointment of Dr Ales Praznikar as medical director, the ongoing development of both the centre’s services and team is set to advance further still. NR Times learns more.

Beforejoining Murdostoun as its medical director, Dr Ales Praznikar served as the clinical lead for the neurorehabilitation unit at Queen Elizabeth University Hospital in Glasgow. With Queen Elizabeth University Hospital being one of Murdostoun’s main referrers, Dr Praznikar was already familiar with the facility and had engaged with the team there on numerous occasions before his transfer.

The level of interaction between the Murdostoun team and the neurorehab team at Queen Elizabeth University hospital, as well as the preparation from both teams, enabled numerous patients to successfully transfer from an acute to a residential setting. The incredible care delivered in the residential setting at Murdostoun was an important factor in Dr Praznikar’s decision to join their team.

“We referred quite a lot of patients to Murdostoun, and I also visited the facility, because I wanted to see where the patients were being referred to,” says Dr Praznikar. “It was a very good team. They would send me a report of every patient that we referred, and they were very nicely done.

“I was familiar with the quality of the facility well before I came here. It is a well-run centre, and I am really pleased to have joined the team here at Murdostoun as medical director.”

Dr Praznikar has a highly respected track record for his clinical work, including his previous role as the director of the International Alliance for ALS/MND and membership to the European Academy of Neurology Scientific Panels for neurorehabilitation and neuropathic pain. Aside from his experience, he is a renowned leader, committed to service and staff development alike. The addition of Dr Praznikar to Murdostoun’s neuro-rehab team shows Active Care Group’s dedication and investment to further develop and improve their services.

As such, plans are being looked at for the expansion of Active Care Groupowned Murdostoun - both in terms of capacity and new provision for certain conditions, as well as involving the

team in research projects. This will support the further development of the capability and reputation of this specialist 46bed North Lanarkshire site, which supports people with neurological injuries and illnesses from across the West of Scotland and the wider country.

Committed to achieving best outcomes

For many years, Murdostoun has had a reputation as a key provider of neuro-rehab and neurological care for patients primarily from the Greater Glasgow and Clyde NHS area, but across the wider country too. Set in a rural location with expansive gardens, Murdostoun comprises a brain injury rehab unit - which supports survivors as soon as they are medically stable and are able to work with complex patients, such as prolonged disorders of consciousness, functional neurological disorder and those who have a neurological condition requiring a tracheostomy. There is also a neurological care unit - which provides both longterm, including slow-stream rehab provision. Both sites can provide respite and complex needs care. For all patients and their unique needs, the Murdostoun team is committed to delivering the best possible outcomes, whatever the circumstances.

One patient, 47-year-old Scott, was admitted to Murdostoun for long-term care after sustaining brain injury in an assault in 2010. He also has a history of drug and alcohol misuse. He had seen the breakdown of many relationships and people losing faith in him, causing Scott to feel “stuck in life”.

Although he often finds social situations very challenging, the Murdostoun team were determined to help him manage that as much as possible, as well as helping him achieve his long-held ambition of working in hospitality.

Through working with him over the course of many months and years, the right rehab and support has seen huge progress for Scott. Having secured a place on the Social Inclusion Project - an initiative dedicated to creating a diverse society where people have opportunities for inclusion - Scott also secured his dream job in the process. Since October 2022, Scott works one morning each week in a local coffee shop, with duties including serving customers and food preparation. Scott has thrived since taking on the position, making new friends at the coffee shop and relishing his newfound independence. He even joined the staff Christmas lunch last year, something his rehab team say was previously beyond all expectations for Scott.

“I finally feel like I have some

purpose,” says Scott. “I have found my passion working in the food industry.”

Scott’s case helps to articulate the Murdostoun team’s commitment to help patients achieve their ambitions - and clearly shows the efficacy of the goal setting process, says Dr Praznikar.

“We work with patients to set goals, but this process depends on the individual and what goals are set based on their rate of improvement,” he says.

“The set goals must be felt as achievable by the patient, their families and friends, and the team. This case is a good example of what can be delivered and achieved.”

Service development

With an in-house rehab team, and specialism in a host of complex needs, including spasticity management; PEG feeds and skin integrity problems, Murdostoun has the capability to support patients with a wide range of neurological needs.

With Dr Praznikar’s long-standing specialty in more complex cases,

Murdostoun is looking to potentially develop and introduce support programmes for patients with particularly challenging needs, to build on the centre’s and its staff work even further.

“We have some sub-specialty programmes for especially complex patients,” says Dr Praznikar.

“Such as patients with prolonged disorders of consciousness (PDOC), patients with tracheostomy, complex stroke patients and those with spinal cord pathology.

“In some of the programmes, like PDOC, there have been a lot of advancements recently in basic science and clinical science, which means it needs to be looked at as almost a sub-specialty clinical approach.”

The Murdostoun team have developed their patient support systems in both the brain injury rehab and neurological care disciplines over many years. While they are already accustomed to dealing with the most complex cases - an area that could be developed further still - the principles of engaging each patient

in rehab and support are the same, says Dr Praznikar.

“We take any patient with neurological dysfunction, and that is what neurorehabilitation is all about. At Murdostoun it is our goal to treat all patients with these conditions,” he says.

“The basic concepts are the same for everyone. We admit patients when we believe that the team’s approach can improve a patient's functioning in any of the domains, be that physical, cognitive, emotional, or social.

“It might be the particularities of

Dr Ales Praznikar

treatment might be different, perhaps additional treatments like pharmacology, but the basic concept is the same - we want to support people with a neurological dysfunction or dysfunctions in order to improve their lives.”

Team development

The team at Murdostoun is well known for their capability and commitment, which attracted Dr Praznikar to the site prior to joining. Now, he is keen to use his extensive experience in leadership and development to help support the progress of team members.

“I think the team is excellent and has potential for further development

and they are committed to participate in developing their skills,” he says. While training and skills development remain a key part of Active Care Group’s ethos and commitment to their staff, Dr Praznikar would particularly like to focus on and advance their involvement in research.

“We would like to start several research projects, which would really help the team to develop,” he says. “They have experience in this already, especially within the neuropsychology programme, where there has been some research going on.

“I have started to make it more

structured and [an] almost a regular part of the clinical work. It will be organised as part of this, we will be clear about how to manage and achieve the outcomes.

“I believe that research and the data can contribute to the treasury of knowledge, in a way that is necessary to the inherent part of clinical work.

“It’s a team effort and an area we can involve the team for their development, and for the development of our service.”

To find out more, please visit activecaregroup.co.uk.

Revolutionising upper extremity rehabilitation: unveiling the ArmMotus™ EMU by Fourier Intelligence

Fourier Intelligence has developed an innovative upper extremity rehabilitation device called the ArmMotus™ EMU. This cuttingedge technology, resulting from collaborating with Fourier's University of Melbourne Joint Laboratory, has garnered significant recognition and is poised to revolutionise therapy for various medical conditions.

Here are seven key things you need to know about the ArmMotus™ EMU.

Award-winning design

The ArmMotus™ EMU has earned numerous prestigious accolades, including the IERA 2023 Winner, Medical Design Excellence Award, Good Design Award 2022, iF Design Award 2022, and the Red Dot Award 2022. These recognitions highlight the device's exceptional design and potential to transform rehabilitation practices.

Iterative prototyping and optimisation

Before its final design, the ArmMotus™ EMU underwent rigorous internal prototyping and 17 product design iterations. This meticulous process focused on optimising manufacturability, serviceability, installation, and clinical usability, ensuring a high-quality and userfriendly device.

Versatile therapy for various conditions:

Explicitly designed for upper limb

rehabilitation, the ArmMotus™ EMU offers therapy for a wide range of medical conditions. It effectively addresses impairments caused by stroke, traumatic brain injuries, spinal cord injuries, multiple sclerosis, orthopaedic disorders, and other neurological disorders affecting the upper extremities.

Innovative cable-driven mechanism

The device incorporates an innovative cable-driven mechanism featuring a dual aluminium capstan with carbon fibre rods. This unique design allows for a rotatable chassis and motorised elevating column, enabling effortless training setup for individuals with different arm lengths and accommodating both sitting and standing positions.

Enhanced device manageability and patient comfort

Recognising the importance of device manageability and patient comfort, the ArmMotus™ EMU utilises gravity compensation technology to reduce the arm's weight during therapy. This feature benefits patients prone to shoulder subluxation, commonly observed after injuries like stroke.

Immersive therapy with haptic feedback

The ArmMotus™ EMU offers haptic feedback, facilitating communication between therapists and patients. This interactive feature creates an immersive therapeutic environment

and ensures patient safety. Additionally, the device supports various training setups, allowing for task-specific exercises such as motor coordination and bilateral movement training.

Group therapy capabilities

Promoting a collaborative and engaging rehabilitation experience, the ArmMotus™ EMU enables group therapy sessions. Multiple devices can be linked, allowing patients to challenge one another through gamified therapy activities. This approach enhances stimulation, motivation, and patient engagement, leading to more effective rehabilitation outcomes.

The ArmMotus™ EMU, developed under Zen KOH's leadership at Fourier Intelligence, represents a remarkable advancement in upper extremity rehabilitation. Its award-winning design, versatility across various medical conditions, and focus on patient comfort and engagement set it apart as a transformative device. With the ArmMotus™ EMU, the future of rehabilitation holds great promise in achieving improved patient outcomes and enhancing the overall quality of care.

To find out more, please visit fourierintelligence.com.

Advancements in standing wheelchairs

Of all the products that assist people with a disability, wheelchairs seem to cause the most difficulty and confusion. There are so many options and variations that many people finish up with something that doesn't serve them all that well.

There are at least two basic topics to think about - the overlapping demands of "Fit and Function”. Fit is of course determined by things such as the stature of the user but also the fundamentals of their condition. Persons with a spinal cord injury will often need seating designed to protect sensitive skin from pressure and perhaps, depending on the nature of their

injury, postural support. Then there is the issue of what the wheelchair is expected to do and whether it is manually operated or powered. In the ever-evolving world of assistive technology, standing wheelchairs can be a gamechanger, offering a new level of independence and mobility for wheelchair users. By being able to elevate themselves to a standing position, individuals can experience improved blood circulation, reduced risk of pressure sores, enhanced digestion and improved bone density. The question then is just how much does a particular product allow you to move and to stand and does this

meet your requirements?

At Anatomical Concepts they don’t deal with wheelchairs, but rather with something that combines the mobility function of a wheelchair, with the ability to stand and movethe Tek RMD from Matia Mobility. In the UK market, wheelchair users have access to a wide range of standing wheelchair options, each designed to meet specific needs and preferences. Manual standing wheelchairs offer individuals the opportunity to independently adjust their position using a manual hydraulic pump. These are often lightweight and provide a costeffective solution for those who prefer a more hands-on approach.

On the other hand, power-standing wheelchairs utilise electricpowered systems to facilitate easy transitioning between sitting and standing positions. These models are particularly suitable for individuals with limited upper body strength or dexterity.

Hybrid standing wheelchairs offer the best of both worlds, providing the flexibility to switch between manual and power functions. This versatility allows individuals to adapt to different situations and tailor their experience based on their specific needs.

A common issue with many standing wheelchairs is that the user may not be able to achieve truly upright standing due to the need to maintain safe stability. A wheelchair typically will have its centre of mass behind the user and to maintain stability the user's mass will need to be not too far forward.

This results in the user being tilted back slightly even when in the fully extended position.

In other words, standing wheelchairs are typically not optimal when prolonged standing is required. They are most suitable when the majority of the time the user will be seated and will make only occasional and brief moves into standing.

Ergonomics and comfort should also be prioritised. The standing wheelchair should provide adequate support for the user's body, including the back, legs, and feet. Adjustable features, such as seat height and angle, should be available to optimise comfort and reduce the risk of discomfort or pressure sores.

The Tek RMD, just like any other product such as a standing wheelchair will not be suitable for everyone. Each Tek RMD is set up at delivery to suit the user's stature and is generally ideal for someone with good use of the arms and hands but paralysed or weak legs without significant contractures. All medical devices have contraindications and your product supplier should check that

you are suitable for a particular product.

One consequence of achieving a great upright posture is that it challenges the core strength of the user. So for example, the Tek RMD may not be ideal for someone with a high-level spinal cord injury as it may not provide enough trunk support for prolonged standing. When the Tek RMD is suitable, it allows by far the best posture and due to its narrow profile will be able to navigate easily through indoor spaces.

In addition to the physical benefits, standing wheelchairs or

the Tek RMD offer psychological advantages. The ability to stand eye-to-eye with others fosters a sense of inclusion and equality. It can significantly improve selfesteem and positively impact social interactions. Whether it's participating in conversations at eye level or reaching for objects on high shelves, these products empower individuals to engage with the world on their own terms.

To learn more about the Tek RMD or to obtain a demonstration see https://www.anatomicalconcepts. com/life-elevated.

Going above and beyond: Providing exceptional care in rehabilitation case management

Serious injuries caused by road traffic accidents are devastating for any person to come to terms with. But when that accident happens to a child, dedicated and holistic support is required for both the child and their family to ensure optimum development and quality of life. The following outstanding case outlines this support and highlights the dedication of Corporé’s Rehabilitation Case Managers.

Corporé provides expert rehabilitation case management services to the personal injury, risk and absence management markets. With over 25 years of experience, providing support for many different injuries and conditions, we always strive to achieve the best possible outcomes in a case.

This is made possible by our highly capable team of Rehabilitation

Case Managers. Our team have developed extensive clinical experience throughout their careers and have a profound understanding of complex conditions, combined with a determination to support injured parties.

For the particular case outlined below, our Clinical Lead for Catastrophic Services and Rehabilitation Case Manager, Nicola Simpson, was chosen due

to her extensive experience in managing catastrophic injuries. As a Senior Brain Injury Case Manager, Nicola is adept at providing the right care for the most complex of cases, understanding the challenges faced by individuals and their families following life-changing incidents. In 2015, at the age of just two years old, *Millie (*name changed for confidentiality) was involved in a major road traffic

accident where she sustained multiple orthopaedic injuries and a severe head injury. Due to this devastating accident, Millie needed an emergency craniectomy due to the severe swelling and bleeding in her brain which caused left hemisphere damage, including frontal and temporal lobe damage, plus diffuse damage to the whole brain.

In addition, she wore a Minerva cast for several months. Once this was removed, she underwent cranioplasty to replace the missing part of her skull with a titanium plate.

Once Nicola was instructed to support this case in 2018, Millie required several further operations and specialist reviews, including another cranioplasty, pressure monitoring, fitting of a shunt and pain management.

Nicola liaised with her Paediatric Neurological Rehabilitation Consultant and Neurosurgeon regarding ongoing health difficulties and supported Millie and her family with appointments and hospital admissions.

Further symptoms established from Millie’s accident included a right sided hemiparesis, with a deterioration of muscle mass and strength in her right side, impacting mobility.

Millie’s complex and multiple injuries had significantly affected her development and she required extensive support from clinical teams, psychological experts and help in the community, at home and at school. This was made possible through Nicola’s careful choice and organisation of a multi-disciplinary team of experts who focused on an area of critical importance to Millie’s development, supporting her to achieve optimum outcomes.

Multi-Disciplinary Expertise

Occupational Therapy and Physiotherapy Support

Nicola arranged for an Occupational Therapist and Physiotherapist to work in tandem. Their focus was to develop Millie’s activities of daily living, sourcing extra-curricular physical activities such as horse riding, gymnastics and rock climbing to encourage her muscle strength and balance.

Millie also required specialist aids with the pair sourcing desk equipment and chair supports for both her home and

school, whilst also providing a second skin hand splint to assist her right hand. This specialist equipment has supported Millie’s posture and tone, encouraging the use of her less dominant and weaker right side whilst helping her engage in tasks to make them less demanding.

This is supported by specialist weekly sessions in school, provided by the Physiotherapist, to improve Millie’s fine and gross motor skills. Following regular assessments, a sensory profile has been developed with a program and strategies put in place at home and school to help Millie with sensory overload, sensory seeking and pain management. Millie has responded well to the sensory strategies, finding it easier to concentrate with her learning and becoming more determined to contribute to group classwork rather than just individual sessions.

emotions. Within these sessions, Millie demonstrates a significant amount of emotional intelligence which leads her to feel anger and frustration about the accident. PTSD symptoms were also identified, established in night terrors that were disturbing Millie’s sleep.

Using case management best practice, Nicola arranged for a sleep actigraphy assessment that identified that Millie had a disturbed sleep most nights, sometimes stirring over 10 times a night. This would make her feel irritable and frustrated with her own limitations, feeding the anger towards herself. To help Millie get a better night’s sleep and therefore minimise the impact of fatigue on her daily activity, a steppedcare approach of a fatigue management plan was created, with the psychologist, family and school to optimise her energy throughout the day.

Following Nicola’s advice, Millie continues to have Physiotherapy and Occupational Therapy support and guidance is also given to her family and school to continue to maintain and develop her posture, mobility and bilateral integration.

Psychological Support

Due to the extent of Millie’s injuries and the severity of the accident, Nicola arranged weekly therapy sessions with a Child Clinical Psychologist. The aim of her sessions is to help Millie understand her acquired brain injury and identify and express her

The Clinical Psychologist also works closely with Millie’s mother, her main caregiver, providing essential support for her PTSD symptoms resulting from the trauma she had experienced from Millie’s accident and the subsequent operations she underwent. External education and guidance is also provided to family, the other specialists supporting Millie and her teachers to help them understand the impact of her injuries and best support her needs and development.

Educational Support

Millie’s education has remained the highest priority throughout her rehabilitation. Even amidst the global pandemic, Corporé created policies and risk assessments to ensure Millie continued to receive an education.

Nicola completed these risk assessments and arranged for Millie to receive support at home with two

From an incredibly complex case has emerged an efficient rehabilitation case management journey

Rehabilitation Assistants before enlisting in individual lessons within her bubble at school, consisting of the two Rehabilitation Assistants, a Speech and Language Therapy team and Specialist Education Consultants who created lesson plans at an adapted level for Millie. An EHCP application was made with input from the professionals to ensure she received further support in her education and she was awarded full time one-to one support.

For the Speech and :anguage Therapists, there has been a huge focus on helping Millie word find, with her literacy skills, reading and remembering words, in particular for more complex vocabulary. Both the Speech and Language Therapists and Millie have worked incredibly hard on her literacy and language, using a symbol approach and visual cues in her specialised lessons. Progress was observed following two years of perseverance from Millie who now works at a year two level at the age of 10 years old, demonstrating the impact of this bespoke approach. Consistent communication between Nicola and Millie’s school has been crucial in developing her education. All multi-disciplinary meetings have been held at

the school with involvement fromteachers, the headteacher and SENCO. Nicola has arranged for Millie to take part in these meetings to ensure her voice is heard.

During Millie’s rehabilitation, her family moved home to a place that was more suitable to her needs. This meant that a new school needed to be found in a better location. Since Corporé’s rehabilitation case management approach includes seeking support in the community, Nicola was able to work closely with estate agents and other external professionals to seek the most appropriate property for the family.

Once the family had moved, it was imperative that regular communication and relationship building was established with Millie’s new school. This enabled a smooth transition and a better understanding of her needs by the new school team.

Due to her cognitive ability, it was agreed that Millie would benefit from starting in the year below her age grade where she would be supervised by teaching assistants. Nicola coordinated training sessions for Millie’s new teacher and teaching assistants on her brain injury, behaviour and how best to support her needs.

Through dedicated support, and even through times of adversity, Millie has been able to remain in mainstream education and enjoy life, having a fantastic range of social and leisure activities and spend time with her family. She has been keen to raise money for charitable causes and to date, has raised close to an incredible £5,000 for her local air ambulance charity by completing a sponsored walk and from creating and selling bookmarks.

From an incredibly complex case has emerged an efficient rehabilitation case management journey. Without this, Millie may not have had the childhood and independent future she deserves. The dedicated input and immersive support of Corporé’s case management approach and the extensive expertise of Nicola and the team of professionals, with an outstanding level of communication only established with our process, has meant we continue to be able to achieve significant progress for the incredibly brave Millie and her family, promoting independence and highlighting that together we really are better.

To discover more, please visit corpore.co.uk.

How VIM Health are promoting financial accessibility in neurorehabilitation

Rehabilitation is vital in helping individuals regain functionality and improve their quality of life after an injury, surgery, or debilitating condition. While private practices offer specialised care and personalised treatment plans, the cost can be a significant barrier for many individuals. This article explores possible strategies to make private rehabilitation financially accessible. We will also look at ways to ensure that individuals from all socioeconomic backgrounds can benefit from these essential services and accelerate their journey towards recovery.

Transparent pricing and cost-effective solutions

Transparent pricing is a crucial aspect of making private rehabilitation financially accessible. Neurorehabilitation centres should provide clear and comprehensive information about the costs of services, therapies, and treatments. This transparency empowers individuals to make informed decisions, understand financial responsibilities, and explore cost-effective alternatives. Additionally, private practices can actively seek partnerships with suppliers and negotiate discounted rates for medical equipment and therapeutic resources, ultimately reducing the overall cost burden for patients.

Sliding scale fee structures and income-based programmes

Implementing sliding-scale fee structures based on income levels can significantly enhance financial accessibility in private rehabilitation. Rehabilitation centres can assess patients' financial situations and offer discounted rates or develop flexible payment plans that align with their financial capabilities. Additionally, private centres can establish incomebased programs to provide subsidised or reducedcost rehabilitation services for individuals who meet specific income criteria. These programs help ensure that cost does not hinder access to essential rehabilitation treatments.

Insurance coverage and reimbursement options

Collaborating with insurance companies is an

effective strategy to enhance financial accessibility in private rehabilitation. Private healthcare centres can work with insurers to develop coverage plans that cater to different income levels. Individuals can access services without overwhelming financial constraints by exploring affordable insurance options. Furthermore, Neuro Rehab practices can streamline the reimbursement process by advocating for appropriate treatment coverage, ensuring that patients receive the financial support they need to pursue their recovery journey.

Tele-rehabilitation and remote monitoring

Leveraging technology and telerehabilitation platforms can enhance financial accessibility in private rehabilitation. Remote rehabilitation sessions can significantly reduce travel expenses and eliminate geographical barriers, making it easier for individuals to access specialised care from the comfort of their homes.

Additionally, remote monitoring technologies enable therapists to assess progress and provide guidance remotely, reducing the need for frequent in-person sessions and potentially lowering overall costs.

Breaking down financial barriers

One of the primary obstacles to accessing healthcare is the high cost of medical services and treatments. VIM Health's bursary scheme addresses this issue by providing financial assistance to individuals who cannot afford the total cost of healthcare services. VIM Health's bursary scheme is not a one-size-fits-all approach. The program considers individual circumstances, such as income, family size, and medical needs, to determine the level of financial assistance required. This personalised approach allows for a targeted allocation of resources, ensuring that those with the greatest need receive the support they require. VIM Health has recently partnered with the CiaO Foundation to provide a not-for-profit grant scheme which is expected to help over 50 people obtain vital rehabilitation care over the next 12 months. By offering subsidies and grants, VIM Health ensures that financial limitations do not prevent individuals from receiving the necessary medical attention. Ensuring financial accessibility in private rehabilitation is crucial for enabling individuals to receive the care they need to regain functionality and improve their quality of life. Private rehab centres can break down financial barriers by implementing transparent pricing, collaborating with insurance providers, offering sliding-scale fee structures, seeking grants and scholarships, and leveraging technologydriven solutions. These strategies empower individuals from diverse socioeconomic backgrounds to access the benefits of private rehabilitation services and embark on a transformative journey towards recovery. Through its commitment to accessible healthcare, VIM Health is paving the way for a more equitable and inclusive healthcare system where financial limitations no longer stand in the course of a healthier future. For more, visit vimhealthcare.co.uk.

Outcome measurements in neurobehavioural rehabilitation: learnings and

recommendations from The Avalon Centre

Following an extensive review of outcome measures across all Elysium Neurological services, a standardised approach was agreed for each service pathway. The methodology was decided through consultation with experts both within and outside Elysium Healthcare, drawing upon a wide range of knowledge and experience to ensure the most comprehensive outcomes possible to improve patient experience.

Professor Nick Alderman, Senior Clinical Director & Head of Psychology, Elysium Neurological Services, led the establishment of these uniform outcome measures, which was a significant development in assessing the standard of the care Elysium delivers for the patient, at an individual service level, across a pathway and across the division.

Professor Alderman is a firm believer that outcome measurement should be embedded in the clinical fabric of the service, so that they’re part and parcel of the rehabilitation and neurological support programme and not seen as separate from it. In this EveryExpert article we discuss how

outcome measurement is being used at The Avalon Centre in Wiltshire, a neurobehavioural centre for men and women who have an acquired brain injury and what impact it is having on patient’s rehabilitation.

Hi Nick, thanks for talking with us today. Could you provide an example of how outcome measurement is being used within a specific Elysium Neurological service?

Nick: “Yes of course, The Avalon Centre is a very good example to use. The men and women at the centre have challenging and complex needs because of their brain injury and require a neurobehavioural rehabilitation programme. The centre opened 3 years ago and we’ve been able to look at outcome measurements for a group of 30 patients. Approximately half of them have been discharged and the remainder are still in rehabilitation. “Outcome assessments are completed shortly after admission, every three months onwards and repeated at the time of discharge. The

outcome data enables the clinical team to see where the patient is in relation to when they were admitted. We’ve used five main outcome measurements (SRS; HoNOS-ABI; SASNOS; FIM+FAM; QOLIBRI) and these measures inform the clinical team of everything they need to consider in terms of the rehabilitation programme.”

And what have the results of these outcome measures shown?

Nick: ”The results have been very encouraging and showed a great deal of improvement amongst the patients. For those first 30 patients there is evidence that they have made meaningful change. And by that I’m not just talking about statistically significant change, these results show that the size of the difference is beyond the level which for most patients would reflect clinically meaningful difference.

“Tables one and two show results from the FIM+FAM and SASNOS, in many ways these two measures capture some of the most frequently

reported outcomes arising from acquired brain injury (ABI). The FIM+FAM provides a measure of disability following ABI, comprising 30 items that predominantly reflect either motor or cognitive difficulties, together with a further 6 items relating to extended activities of daily living (EADL).” (see table 1)

“The SASNOS contains 49 items concerned with neurobehavioural disability (NBD) which can be sorted into 5 main domains. A preferred method of comparing how much a group of people assessed on two occasions have changed is by calculating what is called effect size. Some researchers and clinicians use statistical tests for this purpose. However, achieving a statistically significant difference between scores which implies patients have improved compared to the first assessment can be problematic in several ways. In particular, a difference between group scores that is statistically significant doesn’t indicate whether this is a meaningful difference, one that is sufficient to reflect improvement that is beneficial to patients and their families, and it doesn’t say anything about how large this difference is.

“Both the size of the difference in scores and whether this is likely to be meaningful can be determined by calculating what is called “effect size”. This results in a score of zero or higher. The size of the difference

is generally held as being ‘trivial’ (less than 0.2), ‘small’ (equal or greater than 0.2, less than 0.5), ‘medium’ (equal of greater than 0.5, less than 0.8) and ‘large’ (equal or greater than 0.8). When considering effect size, a ‘medium’ effect is generally accepted as reflecting meaningful change which is further amplified when this is ‘large’.”

“In the case of the Avalon Centre patients, table one supports that when compared to assessments made shortly after admission, on reassessment, both discharged patients and those still in rehabilitation achieved large meaningful change in three of the four scores from the FIM+FAM. The size in the magnitude of change in EADL scores was medium, but still likely to be great enough to be meaningful to patients and their families.

As half the group were still in rehabilitation, it may be the case the further improvement by discharge will also elevate the size of the difference to be large. Change in scores on the SASNOS was also sufficient to suggest meaningful change within the patient group across all five major domains of NBD, especially reduction in symptoms of cognitive impairment and difficulties with inhibition (see table 2).

“Evaluating change in outcome measures at what is still an early stage in the development of the Avalon Centre was important as it signposted the effectiveness of the clinical

programme and the real impact this is having in improving the quality of life and independence of the patients. This will also reassure managers and commissioners regarding the effectiveness and quality of the service.”

*SRS

= Social Responsiveness Scale

HoNOS-ABI = Health of the Nation Outcome Scales for Acquired Brain Injury

SASNOS = St Andrew’s Swansea Neurobehavioural Outcome Scale

FIM+FAM = The UK Functional Assessment Measure

QOLIBRI = Quality of Life after Brain Injury

The results are very impressive and we’ll come back to those again shortly. But I want to talk about the process first, who should be involved in outcome measurements?

Nick: “The whole clinical team - all the clinicians should be on board and involved in completing them, so it's a meaningful discussion about where should we score this patient which often throws up what the goals will be for the patient, and then how the rehabilitation programme will be tailored to meet these.

“When outcome measures are embedded in the fabric of the service there are benefits both for the patients and for the service itself.

But it is not enough for a psychologist or a clinician to use them in isolation, there has to be a clinical context that supports it.

For example, managers have to be on board and they have to say that yes this is something we want for a service so it will happen. The resources, such as computers and appropriate software, should be available to run it all and there needs to be policies to ensure that the outcome measures are completed at the regular intervals that they’re intended. Policy has to underpin outcome measurement to inform the clinicians what they have to do.”

What is the importance of the frequency that outcome measurements are recorded?

Nick: “Typically the first measurements would be taken in week three, after a person has been admitted – the clinical team will wait a few weeks to get to know the individual and allow them to settle into the service.

"But three weeks is also a short enough period to ensure that no meaningful change is likely to have taken place in the first couple of weeks.

"They would then be completed every 3 months following and then at discharge. In the ideal world, there would be follow up post-discharge and the outcome measures completed again, but unfortunately that isn’t possible yet.

“When outcome measures are taken at this frequency, we know that at any stage during a patient's rehabilitation journey we can track their individual progress and determine their response to rehabilitation.”

It’s clear the benefits of outcome measurements for patients, but what about at a service level?

Nick: “Outcome measurements are not just for measuring how the person changes individually but also to benchmark a service, and inform how we manage all our services. For example we have launched a second neurobehavioural hospital service in Staffordshire, called Moorlands Neurological Centre, and the findings from this study have shaped the outcome measures being used in the new service. Data from outcome measurement is also important for commissioners so they can make

informed judgements about where to place patients.

“Information from outcome measurements can be used in lots of different ways and for us at The Avalon Centre, it has helped us consolidate our strategic approach. For example, outcome measures have all been incorporated into the electronic patient record, so they are part and parcel of the clinical fabric of the treatment programme. So we’re adopting a different approach to other services, where it might be one or two people in a room going through the outcome measures, perhaps trying to process them as quickly as possible, without any sort of meaningful interaction.

“Within our service, the outcome measures are completed with representatives from the whole team, it’s a group approach. Outcome measurements inform the treatment programmes, rather than being seen as something separate. They are actively used to help set goals for patients and using those outcome measures is a way of showing whether those goals have been achieved or not. The ultimate goal is that there will be a dashboard that’s available for the clinicians in Elysium Neurological so that at governance meetings, or any time, we can look at the outcome measures and determine the effectiveness of rehabilitation in a single unit or across a clinical pathway comprising several units through examining group data.”

I imagine this is important for governance and quality as well?

Nick: “Absolutely. Outcome measures provide feedback about a service, it shows what we need to change to make it effective. This data can be be used in clinical governance meetings, it enables open and transparent conversations, so that teams can be proactive and address small issues before they become major ones.

“So for example, if on the SASNOS, on the aggression subscale there is a trivial response, you think, well hang on a minute, this is neurobehavioural rehabilitation and aggression is something that we find quite often, so it would be a difficulty for a highly specialist service to appear ineffective in reducing this. However an advantage of the SASNOS is that there’s a threshold, so anyone

that’s scoring in the normal range is showing symptoms of that category that you would expect to find within the general population. And what we found was, when we looked at the aggression scale, and we’ve seen this in others so it’s not an outlier, is that quite a few patients come into the service that actually don’t have problems with aggression in the first place, it’s other things that they have a problem with.

“Often it’s difficulties with interpersonal behaviour and cognition that bring people into a service, so you can select out patients who you don’t expect to change because that’s not a problem.

"And when we did that with the aggression subscale, when we only looked at patients whose scores were less than you would expect to see in the neurologically healthy population, they showed a large change.

"So that was an interesting way of showing that the programme is targeting the issues that the person is coming in with.

"Sometimes, particularly with issues around restrictive practices, people think the programme is not individualised enough, but the programme is individualised, it always has been, and showing that effect supports the uniqueness of the programme”.

That’s something we haven’t discussed yet, how do outcome measures impact personalisation? Nick: “When outcome measurement is properly integrated into a daily rehabilitation programme the degree of personalisation for each patient is significantly higher. The programme is genuinely tailored to individual needs because it is constantly being adapted to the data – emphasis is placed where/ when/how a person needs additional support based on their real-life progress which is monitored on an ongoing basis.

The outcome measures show what the programme needs to address, so if someone is scored on the SASNOS and aggression is something that’s rated as an issue, the programme can be modified to meet the needs of that person so they’re less likely to be aggressive.

“And this also illustrates the

importance of having an experienced psychologist available to analyse and interpret the results, because if you look at the data as a whole, all patient scores, versus only scores that exceed the threshold expected in the neurologically heathy population, and compare their scores from admission to where they are now, there’s a big difference." But, as discussed earlier, when we filter out the patients for whom aggression is a problem, because they lie underneath the threshold for which aggression is a normal range, then we see interesting results. Quite a few patients are coming into the programme who haven’t got aggression problems and their scores will hopefully be within the range of scores for people like you and me. But if we just look at the people who have difficulties, because their score falls below the threshold, and compare their scores from admission to where they are now, there’s a big difference. So for the people who are aggressive, the programme is specifically being modified to target that aggression and that is being reflected in the outcome measures when you look at the data in that way, so I think that is a big advantage of the SASNOS. So rather than having a

programme that tries to tackle every single aspect of neurobehavioural disability, it is personalised. You modify the programme to only try and address the symptoms that are being rated as problematic. This is totally the opposite of a blanket approach with blanket rules. Outcome measures increase the individualisation of a programme.”

The results are very impressive, with real tangible benefits for patient and service. So where do you go from here? How do you build on these results?

Nick: “The success at The Avalon Centre has demonstrated that when the use of outcome measures is thoroughly embedded throughout the service, and integrated into daily clinical practice the benefit for both patient and service is significant and can be replicated across all our services. Neurobehavioural outcome data is showing the way for the other four care pathways at Elysium Neurological, in terms of their outcome measures, and demonstrating the value, but my wish is for our impact to have a much wider reach.

“There are numerous issues with the use of outcome measurements in

neurological rehabilitation in general, which vary from service to service across the sector.

The issues range from some services not using outcome measures at all, to those who go through them in a notional way and those who don’t have the expertise to interpret the outcomes.

Often they are seen as a separate part of the process, failing to inform goal selection and probably not validly reflecting response to rehabilitation. "In those cases, the true value of using outcome measures is not fulfilled.

“If we can share our learnings from The Avalon Centre and encourage everyone in neurorehabilitation to embed outcome measurements so they become part and parcel of the clinical fabric, the impact on a patient’s rehabilitation will be huge and make such a positive difference to their lives and the lives of their families.”

Get the latest insights, blogs and news from Elysium Neurological over on their EveryExpert thought leadership hub: elysiumhealthcare.co.uk/neurological/ every-expert/

I need an Occupational Therapist - but what am I looking for?

While we’re all familiar with the term, Occupational Therapy remains an area where many professionals know they’ll need to appoint one - but what makes a great Occupational Therapist, who can truly support your client to get the best possible outcome from their rehabilitation? Steph Fleet, Specialist Rehabilitation Occupational Therapist and Head of Service Development and Customer Relationships at Think Therapy 1st, addresses some of the key questions.

What do Occupational Therapists do?

Occupational Therapists primarily focus on a person's occupations, encompassing all the tasks and activities they want and need to perform in their daily lives, ranging from simple actions like getting out of bed to more complex endeavours such as maintaining full-time employment or travel.

To achieve this, these highly skilled professionals analyse individuals' abilities and evaluate their surrounding environments.

Occupational Therapists possess a comprehensive knowledge of anatomy, physiology, various medical conditions, injuries, and diseases. Additionally, they are well-versed in neurosciences, cognition, perception, sensory function, and related disorders.

Furthermore, Occupational Therapists have expertise in psychology, mental health, sociology, and behavioural sciences, enabling them to understand how individuals adapt

to changes resulting from injuries, illnesses, and disabilities. They also have a deep understanding of communities and environments which enables them to pinpoint the barriers to completing any daily activities and occupations and can take it a step further by enabling the person to return to complete the things they want and need to do in the environments they need to participate in.

They achieve this by:

Restoring Skills: Occupational Therapists work towards restoring an individual's skills to their pre-injury level or within their capabilities to complete the tasks.

For example, if someone has limited upper limb mobility and wishes to tie their hair, an Occupational Therapist will identify activities that incorporate the physical abilities required for achieving this goal. These activities are designed to be meaningful and varied, so there is opportunity for repetition and skill and strength transference between tasks.

Adapting Tasks: if a person cannot regain the physical abilities required for a specific task, Occupational Therapists explore ways to adapt the task and teach alternative methods. For example, they may suggest using hair clips instead of bands or provide equipment to stabilise the individual's arm in the necessary position or show someone an alternative way to get dressed.

Compensatory Techniques: In situations where adaption techniques are insufficient for the individual to perform the task independently, Occupational Therapists can introduce compensatory techniques. This may involve having a carer or support worker assist the person in tying their hair, or suggest specialist equipment or home adaptations.

Occupational Therapists are well-placed and provide pivotal roles in helping individuals return to their activities and occupations through restorative, adaptive and compensatory techniques that are all part of rehabilitation.

Isn’t a specialist OT the same as a rehab OT?

No. Specialist knowledge is a skill set gained in a particular area. For example, specialising in mental health, the Occupational Therapists will be working with client groups experiencing high levels of anxiety and depression and techniques are taught to enable the person to participate in the environment.

Social care specialists are highly skilled in equipment and housing adaptation.

Spinal and Neuro specialists are skilled in restoring neural pathways through functional activities. Specialists in trauma are skilled in adapting and compensating techniques to manage their pain and environment until the injury has healed or been repaired and they will also have experience of the mental health aspects of trauma with knowledge of PTSD and its impacts. Typically, individuals are discharged from hospitals with adaptive and compensatory techniques in place. Even rehabilitation units with statutory funding have limited time and scope for therapy, as the ultimate aim is to facilitate the person's discharge. On the other hand, rehabilitation specialist Occupational Therapists have expertise in multiple areas, such as neurology, complex orthopaedics and trauma.

They can identify how different symptoms interact with each other, as well as with a person's activities and environment.

These specialists focus their intervention on restoring abilities using adaptive and compensatory techniques, grading activities to improve specific cognitive or physical components.

They address multiple goals within a single activity while ensuring the individual does not experience failure, cognitive overload, increased pain, or heightened fatigue levels.

While all Occupational Therapists possess these skills, rehabilitation specialists have honed them

environment

specifically for this client group. When looking for a Specialist Rehabilitation Occupational Therapist, it is advisable to look for someone with several specialisms who can identify creative and dynamic therapy sessions in all the environments the individual needs to participate in whilst not doing for the person what they can do for themselves.

Why choose TT1st?

Think Therapy 1st (TT1st) provides exceptional rehabilitation services through their team of highly skilled and knowledgeable Specialist Rehabilitation Occupational Therapists who operate at an advanced or consultant level. The growing business uses local Occupational Therapists (the current network comprises over 80 Occupational Therapists) because hands-on functional rehabilitation needs, at minimum, weekly sessions, but this can be up to three sessions per week if high-intensity rehabilitation is indicated. Coordination of multidisciplinary and other service providers is also part of what TT1st do – although not alone. TT1st pride themselves on not doing for the person, what they can do for themselves and use this as part of therapy to facilitate the person in being able to manage their ongoing needs or has a well-established support system in place. The goal is to create a lasting impact that extends far beyond the duration of therapy, promoting long-term independence and wellbeing.

They can identify how different symptoms interact with each other, as well as a person's activities and

4D Life is an evidence-based support programme for people living with Parkinson's created by a Remedial Personal trainer, a Neurological Physiotherapist and a Registered Dietitian. The programme is split into four dimensions:

1. Movement covers cardiovascular training, strength training, mobilisation, stretching and walking.

2. Nutrition follows the research to look at what to eat, what not to eat, when to eat, supplements and water.

3. Function covers balance, digestion, breathing, posture, core, dual-tasking, skill acquisition and gait cycle

4. Lifestyle looks at sleep, stress, anxiety, inactivity, planning, non-medicinal drugs and getting

motivated.The programme walks people through the process of making a small change, feeling a benefit, building on the benefit to make another change, and so on, until they find a balance that works for them as an individual.

Nick Berners-Price, managing director, explains the reasoning behind the programme.

"I’ve been a personal trainer for nearly 30 years now, for the last 20 years working mostly with people with medical conditions.

"Again and again I’ve seen that by combining the benefits of many small improvements, significant results can be achieved in managing symptoms and improving outcomes.

"The evidence tells us that there are many potential ways to improve Parkinson’s symptoms and even slow condition progression.

From balance training to sleep

management, exercise to food, skill acquisition to dual-tasking. One recent study by Penn State and Harvard Universities provided the strongest evidence to date that diet quality and regular physical exercise combined can help improve symptoms associated with Parkinson's (https://www.4dlife.org/research/) And of course, how we feel comes down to so much more than one condition.

New programme, supported by grant funding from Parkinson’s UK, uses a different approach to help people manage the condition

Evidence tells us there are many potential ways to improve Parkinson's symptoms and evem slow condition progression

There are all those things that just make us feel better, whether they directly affect Parkinson’s or notbetter breathing, better posture, less processed food.

Low levels of Dopamine in the body can make it harder to feel positive or happy, increasing propensity to feeling apathetic or anxious. Often, especially if we have a neurological condition, we have to get to the results through the domino effect.

One small step forward (a daily walk, a healthier dinner, better breathing or better sleep management) leading to feeling a little better and having a little more energy.

Using that energy to implement another small step forward, and then another, until many small changes to daily habits have led to huge improvements in condition and wellbeing. I understand this only too well. I’ve had Multiple Sclerosis for 16 years and this is exactly how I manage my condition.

Everybody has to make a choice as to how much time and effort they put into maintaining health and managing their condition, versus getting on with life and following their dreams

My team, including a specialist Neurological Physiotherapist and a Registered Dietitian, have created an online programme, called 4D Life, specifically for people with early or mid-stage Parkinson’s. We've been supported by grant funding from Parkinson's UK and are very proud of working in partnership with them, as well as being supported by Cure

Parkinson's and The European Parkinson's Therapy Centre.

Diagnosis is not the end, it can be a new beginning, but people need help to find their way through.

Everybody has to make a choice as to how much time and effort they put into maintaining health and managing their condition, versus getting on with life and following their dreams. This is such an important balance and it’s different for everybody.

But the easier it is to make changes that improve your condition, the more you are likely to make. What we’ve done in the 4D Life programme is pull together all of the elements that can help (outside of medication) and made it as easy as possible for people to find the balance that works best for them."

The programme can be accessed through www.4Dlife.org from anywhere in the UK for a membership subscription of £12.75 every four weeks.

Social Return’s Re-drawing Identity conference Thoughts from The Compere

Alittle water and some reflection has flowed under the bridge since our ‘conference with a difference’ couple of months ago and we continue to receive fantastic feedback from attendees and from those who have heard about the day. We are delighted by the impact it has had!

We wanted to create ‘a conference with a difference’ by shaking up the usual conference format with the aim of creating something deep, meaningful and immersive. At the heart of this difference was the collaboration between our amazing presenters who gave generously of their time to meet with each other ensuring that topics and content was integrated and there was a flow to the day. I know from presenter feedback that this was a very enjoyable process, from which we learned from each other along the way.

The selection of a theatre space as our venue and a meeting of minds about adding artistic content in terms of the drawings, by Graham Ogilvie, Grace, Currie’s, painting and original music content by Evernova (as well as the guest appearance of a glitterball!) served to strengthen and underpin the messages and learning around

the topic of the day. But beyond all of those aspects, the contributions - directly and indirectly - from people whose life changing injury profoundly impacted their identity, was the aspect that fundamentally impacted all of us across the day. It was humbling and powerful to hear their stories and to view therapeutic inputs through the lens of authentic lived experience. I am delighted that we were able to create and share something about such a central aspect for survivors of life changing injury and that the content resonated so meaningfully with those who are tasked with supporting recovery, rehabilitation and re-drawing identity. 97 attendees voted for Social Return to run another conference, so watch this space for information on the next one!

Incredible conference hosted by Social Return Case Management yesterday. My brain was buzzing with ideas! Becky

Coupland

A wonderful day at Social Return Case Management 's re- drawing identity conference with some team members. It was wonderful

to present alongside such inspiring and interesting speakers and the day had a wonderful atmosphere. The structure was very creative with Evernova playing beautiful music, Graham Ogilvie drawing as we spoke and painting by Grace Currie. Well done Vicki Gilman and team for a unique event born of creativity, quirkiness and a good chunk of enthusiastic hardwork! Lucy Fallon Great day in Leeds at #redrawingidentity. Fabulous speakers, inspirational client stories and left the venue feeling motivated and energised. I love thinking outside the box Good day at the office.

Emma Fitzsimmons

What type of conference has this kind of line up And a real life artist, musicians and SWEETIE BAGS?!

A Social Return conference that’s what. And it was 10/10. Thank you @ VickiGilman and @SocialReturnCM as a Case Manager, what you did for us all today meant a lot. Caroline

Phelps

Possibly the best conference we have ever attended. Creative, thoughtful, Educational. Human. Inspiring. Well done @SocialReturnCM team. Connected Voice Advocacy

Let’s talk about cannabis BIS Services Conference Report in association with ABI Solutions

By Natalie Mackenzie, director at BIS Services

Myself and the team at BIS Services were immensely proud to deliver our first conference “Let’s Talk about Cannabis” on May 23 at the beautiful venue One Great George Street in Westminster, London.

Superbly supported by the great team at ABI Solutions, it was a day of reflection, learning and debate. I heard more than once, “There is such a great buzz in the room”.

Reflecting on the day, we are delighted that we were able to present such a well received program, that allowed many professionals working in the field of community neuro rehab to walk away full of knowledge. There was certainly a great energy in the venue throughout the day and it was a pleasure to see many of our colleagues as well as new faces.

We provided ourselves the opportunity to delve deep into conversation about

what, in the past, has often been a side-lined or taboo matter when working with our complex clients living with acquired brain injury. Having sat in many MDT meetings and supervisory meetings with our cognitive rehabilitation assistants, the challenges of working with clients who have sought to soothe themselves through most often, recreational use of cannabis, is appearing to be more the norm than the exception.

The perceived obstacles and barriers posed, can at times seem insurmountable, leaving the individuals supporting clients often pondering the expectations of their own input and realistic outcomes.

The phrases ‘lacking motivation’ ‘disengaged’ and ‘low’ are all too often heard; although spending time reflecting with our clients indicated their perception was quite the opposite.

The main message from them was that their rehabilitation actually improved as a result of their cannabis use. Of course, it’s not always that ‘rosy’, but clients reported they were actively able to increase their engagement in rehabilitation provision and felt more in control of their own physical and psychological needs. Is that the cannabis talking, or should we explore that more?

The latter was our drive to bring this conference together, with the overall aim to develop a greater understanding of the benefits of cannabis use across the lifespan, as well as insightful strategies when the obstacles present themselves. Feedback indicated we did just that, and included:

"Excellent conference, well balanced and put together. Really interesting and aimed at the right level

for the audience. Thank you!"

"An outstanding event – everything ran to perfection. Incredibly interesting day and outstanding speakers – look forward to the next event!"

Our team at BIS Services are committed to ensuring that our clients and their families receive a specialist and bespoke service, supported by professionals who truly understand and acknowledge the clients needs and motivations, and can work within less than perfect circumstances, rather than excluding from services.

So many of our clients have been refused services due to a lack of understanding of how to work collaboratively within challenging packages. We take these packages on with enthusiasm and commitment to service quality.

During this exciting and innovative conference delegates we were taken through a variety of professional approaches to managing cannabis or addictive behaviours when working with individuals with acquired brain injury in community settings.

What made me most proud was to see two of our clients, supported by Eky our operations director and Pedro, client liaison manager, open the conference with a frank and honest conversation about their cannabis use.

Bradley and George provided such insights into their experiences of cannabis use and its impact from a perspective we too often fail to provide in these settings. Lived experience, from the clients we all support is the most powerful and informative.

To watch them grow in confidence and spend time networking in a world they confess they often avoid, was a delight to see. Even to hear them tell us that they had no idea those professionals working with them attend such events, to enable us to support them more, gave them further insights into the drive of case managers and multi disciplinary teams have to ensure we can support individuals to the highest standard, in a non judgemental and informed way. Eky and Pedro provided insights into the challenges our rehabilitation assistants face, as well as how we manage from a management perspective, from health and safety requirements to more individualised needs. Everyone

thoroughly enjoyed and appreciated their insights and the feedback about their bravery was loud and clear.

“Skills, knowledge and experience of presenters and how this was delivered was excellent, interactive and service users helped to give a good insight” “Brilliant set up very engaging. The interactive quiz and client interview section were a great idea. All felt very ‘real’ – education through context and true stories not just lab studies and hypotheticals”

Professor Mike Barnes explored the history of medicinal cannabis use and current prescription uses in the UK, with his usual confidence and humour, taking us on a deep dive into the need for more specialists in the medical field to come forward and increase prescriptive uses. His expertise in the area is second to none, and it was a privilege to have him.

“Wow! What a superb presenter – so engaging and knowledgeable” “Is there anything more captivating than a passionate speaker? Very informative without being overwhelming or difficult to digest. Useful advice re line of use”

Neuropsychological impacts of cannabis use was the first of our psychological insights for the conference, delivered by the highly skilled Dr Penny Trayner, showing her newborn baby how to deliver!

Covering the evidence around the shortterm and long-term impact of cannabis use on neuropsychological functioning, including impact on cognitive domains such as memory, speed of information. processing, executive functioning skills

and academic achievement The signs, symptoms and patterns of problematic cannabis use was discussed, including evidence for psychosocial reasons for starting for commencing and continuing cannabis use amongst children and adolescents, as well as recommendations for intervention where required.

Ensuring we covered across age groups was important to us given our audience demographic and for us, the in challenging period of transition from adolescence to adulthood when working with clients with ABI. Not an easy time generally, so we must improve our toolboxes for this population.

“Very refreshing to have shared with lots of research which does not suggest cannabis users are ‘ruined’ for life. Thought provoking points re cause and effect and testing on intoxicated person if this is their norm”

“An inspirational woman and great speaker. I learnt so much from the clinical slide which I wouldn’t normally get to learn about in my work.”

An important cog in the process that we must consider is the litigation aspect, from engagement in rehabilitation to long term capacity to manage finances, and the impact that cannabis use can have on an ongoing claim.

Our sponsors Irwin Mitchell were very supportive of our program, and we were chaired excellently by Laura MartinGerard throughout the day. Partner Sarah Griggs and Richard Jervis, senior associate took us through relevant case studies to highlight the highs and lows; the complicated relationship between clients and their litigation or >>

Eky Popat and Pedro Knight of BIS Services

deputyship team. Reflections on the need for a highly skilled and committed multi disciplinary teams veined throughout the talk, requiring constant communication and updates to ensure a seamless, although sometimes bumpy, journey.

“Fascinating insight into the role of COP and the law and clients with these issues which will certainly be beneficial to my own practice.”

“Easy to digest despite being a complex topic that could potentially be quite difficult to grasp – very insightful case study to illustrate”

Dr Tomás Campbell & Erika Turner encouraged a collaborative discussion from an MDT approach to learning providing suggestions for adjustments and accommodations to consider in rehabilitation planning whilst working within a family network. The duo addressed the ways in which teams formulate clients’ cannabis use and explore the ways in which a thorough and informed formulation as early as possible assists in understanding cannabis use in the individual’s life. Keep calm and carry on was the mantra, with reflections on the relevant professional experience as to the level of impact that cannabis use may have on ongoing rehabilitation.

“Better understanding of MDT approach and taking into account preexisting vulnerabilities and formulation into MDT decision making”

To complete a full lifespan awareness, we were thrilled to present evidence of the role of medical cannabidiol including early life brain injury from a neurological perspective, delivered

eloquently and expertly by Dr Shanika Samarasekera, neurologist and clinical lead for epilepsy, Queen Elizabeth Hospital Birmingham. Hearing results of research carried out as to the efficacy of Cannabidiol in epilepsy treatment which concluded that such prescriptive use is welltolerated, is effective in reducing generalised seizures, potentially improves alertness and potentially improves sleep. Strong positive outcomes from case studies further supported the need to engage in further research and delivery of this mode of treatment to improve the lives of individuals managing the impact of epilepsy.

“Excellent talk, it was so helpful having case studies that were very balanced – not all having positive outcomes but then to be able to provide understating as to causal factors."

“Very interesting study results. Explanation of brain scans were great. NHS perspective amongst a day of primarily private practice speakers was helpful."

Closing the day down with a more ‘chilled’ approach, the psychological formulation in acquired brain injury and working within the Three Circles model presented an opportunity for reflection and case study examples with Dr Fiona Ashworth. Explaining that Compassion Focused Therapy aims to provide clients and clinicians with effective tools to work with challenging circumstances and emotions and involves taking a nonjudgemental, empathic approach, she provided focus on clients who are using cannabis as a coping strategy to try to deal with the many challenges they face following brain injury. An MDT shared goal of ’de-shaming’

and a non-judgmental stance is central when supporting clients with ABI in ongoing rehabilitation.

“A fascinating and insightful talk which has unexpectedly helped me personally as well as professionally. Thank you Dr Ashworth!”

“Very interesting insight into a possible thought/feeling cycle for clients. Great ‘behind the scenes’ type look into a clinical psychology journey”

Many thanks to our supportive sponsors Irwin Mitchell and to ABI Solutions for making the day run smoothly.

It was a pleasure to spend time with many of the delegates at post conference networking where we were joined by BPM Rehab, showcasing rehab through the power of music. A mention also to a long standing client of BIS Services, James Gardiner, who bravely exhibited his artwork on the day, drawing much attention and admiration. Seeing three clients engage so positively in a professional setting, knowing their daily challenges was overwhelming, and I cannot thank them all enough.

We must ensure that we hear more from these individuals that we work with day in, day out, in these learning settings, which not only allows us to reflect as professionals but more importantly presents us with evidence of the positive outcomes all of our work provides in terms of socialisation, confidence building and insight. Their bravery was commendable and we look forward to developing more skills around these public speaking events. If you were unable to attend, the day was recorded and is available via the ABI Solutions website.

"I have honestly enjoyed every aspect of the day. The venue is excellent. The speakers have been informative and interesting. Thank you”

"Thank you it has been a really interesting and thought provoking day. Thank you for all the work that has gone in to make it happen.”

"Excellent day from all perspectives – Thank you. As someone with very limited knowledge of different forms and types of cannabis and CBD."

To find out more, visit thebiss.co.uk.

Dr Fiona Ashworth

Dr Shanika Samarasekera

Sarah Griggs

Dr Penny Trayner

Professor Mike Barnes

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