NR Times (Q2 2020)

XISSUE XX 14 Q2 2020

B AF TA OR BUST Dubliner's love story shines light on condition

P U NCH DR UN K Pioneers fight back against alcoholic injury

RU NWAY RETHIN K

NG

Why fashion can no longer ignore people with hidden disability

ED

HOW

ID CH V O

A

C

QUARTERLY

FAM I L I E S IN FLUX

EMIL IA CLAR K E

Making sense of a neurological crisis

Hollywood star's lead role in improving brain injury outcomes

Special report on rehab in the post-pandemic world

RRP £9.99

THE GAME

NRTIMES 01

S E E N R T I M E S .C O. U K F O R T H E V E R Y L AT E S T N E U R O - R E H A B N E W S A N D O P I N I O N

UK

UK Aquatherapy Specialists Aquatherapy Specialists

Aquasure UK design build and maintain Aquatherapy pools nationwide.

Aquasure poolsnationwide. nationwide.

AquasureUK UKdesign designbuild buildand andmaintain maintain Aquatherapy Aquatherapy pools We pools.

Wehave haveover over20 20years yearsexperience experiencein inAquatherapy/Hydrotherapy Aquatherapy/Hydrotherapy pools.

We have over 20 years experience in Aquatherapy/Hydrotherapy pools.

•Nationwide Nationwide design service design andand buildbuild service

Nationwide design and build service

•Bespoke Bespoke Aquatherapy pools tailored Aquatherapy Bespoke Aquatherapypools poolstailored tailored clients individual needs totothe clients individual needs tothe the clients individual needs • Underwater massage equipment

Underwater massageequipment equipment Underwater massage

Underwater treadmills treadmills •Underwater Underwater Coloured LEDtreadmills lighting

LED lighting •Coloured Coloured LED lighting Wellness products

products •Wellness Wellness products Nationwide maintenance service for all Aquatherapy poolsservice •Nationwide Nationwide maintenance service for all Aquatherapy pools maintenance

for all Aquatherapy pools

UK

Unit 13, Portland Ind.Est. Portland Street, Bury, Lancs. BL9 6EY

Tel: 0161 764 5530

UK Mob: 07887630071

Unit 13, Portland Ind.Est. Portland Street, Bury, Lancs. BL9 6EY

Email: info@aquasureuk.com Web:www.aquasureuk.com

Tel: 0161 764 Tel:5530 0161 764 Mob: 553007887630071

Email: info@aquasureuk.com info@aquasureuk.com Web: Web:www.aquasureuk.com Email: www.aquasureuk.com

E DITO R' S NOT E

Coming back stronger, together Welcome to your latest quarterly update from the world of neuro-rehab, writes NR Times editor Jessica Brown.

No one could have predicted the last six months. But here we are, in the midst of the Covid-19 pandemic, still unsure of what the future will look like for neuro-rehab. It has had devastating consequences, with patients reporting delays to, and cancellations of, appointments, plus increased levels of anxiety and stress, and feelings of isolation.

But within the chaos, some order has formed across the sector. Services swiftly adapted to offer rehab at a distance for people where possible, with Zoom coming to many a practitioner’s rescue, although some have struggled to reach and engage all of their clients.

Many brain injury survivors, meanwhile, have had to adjust to changes to the routines and schedules that give them vital structure and certainty in their daily life as they recover or work towards more independence.

Undoubtedly, new and improved ways of working have emerged from the crisis; while the collective rehab field is being called upon like never before.

Andrew Mernin, editor-in-chief andrew@aspectpublishing.co.uk Paul Allison, commercial manager paulallison@aspectpublishing.co.uk Paul Newton, operations manager paul@aspectpublishing.co.uk Gary Wilding, head of sales gary@aspectpublishing.co.uk Chloe Hayward, sales chloe@aspectpublishing.co.uk

Rehab services are critical in taking on the burden of tackling long-term implications of the virus, including neurological complications.

As we report in this edition there are both challenges and opportunities ahead for rehab professionals and organisations as a result of the crisis.

It's a particularly interesting time for me to take on the role of editor of NR Times, in a period of unprecedented upheaval in the rehab sector; and it's been truly inspiring to see how robust and adaptable services and individuals have been in recent months.

I look forward to seeing the sector rebound and adapt further in the months ahead and what silver linings emerge.

Jessica Brown Editor, NR Times Jessica@aspectpublishing.co.uk

Design: Sophie Dinsdale Social media: Kate Thorpe Editorial contributors: Deborah Johnson, Johanna Perraudin Published by Aspect Publishing Ltd 11 Lansdowne Terrace, Newcastle Upon Tyne, NE3 1HN. Registered company in England and Wales (no. 10109188).

NRTIMES 03

10m

No t in t are

ACQUIRED BRAIN INJURY AND NEUROREHABILITATION

TIME FOR CHANGE ONLINE SUMMIT Transforming Neuro Rehabilitation and Lived Experiences of Acquired Brain Injury Monday 9th November 2020 & Monday 16th November 2020 9am – 1pm Free for Members | Non-Members £35 per session | Summit Pass £99 Come together to: 10mm

Learn from GLOBAL VIEW on ABI, Share your experiences of the impact of COVID, Hear about the future of neuro rehabilitation, Experience new neurotech and clinical tools, Network and RECONNECT

3mm

GOLD EXHIBITORS: Bolt Burdon Kemp, High View Care Services, Thompsons Solicitors, Thornbury Nursing 180mm SILVER EXHIBITORS: Elysium Healthcare, Exemplar Health Care Services, The Oakleaf Group, Priory Group, Richardson Care, Recolo UK, Voyage Care

KEYNOTES | SPEAKER Q&A | ACCREDITED TRAINING | NETWORKING & EXHIBITION AREA | INTERACTIVE PANELS | MEETINGS | SHORT FILMS

30m

Proudly sponsored by: 410mm

04

NRTIMES

10mm

Register attendance: www.ukabif.org.uk/TimeForChange2020

No t in t are

mm

text this ea.

Sponsored by

UKABIF Awards 2020 UKABIF is accepting applications and nominations for the UKABIF Awards 2020 The categories are:

UKABIF Film Award

SHORT

The award will recognise a short film, of no more than three minutes, that raises awareness of the benefits of neurorehabilitation following an acquired brain injury. The winner will receive £500.

FILM COMPETITION

INNOVATION 2020

INSPIRATION.

Mike Barnes Award for Innovation 270mm

MIKE BARNES AWARD FOR

250mm

text this ea.

The award will recognise an innovative project/concept in the management of acquired brain injury that has originality, viability, feasibility and desirability. The winner will receive support from NIHR to advance their project.

Stephen McAleese Award for Inspiration

The award will recognise an individual for their inspirational work in the field of acquired brain injury.

UKABIF Public Engagement Prize

Posters which are presented at the Time for Change Summit may be entered 180mm for this award and will be judged on their ability to communicate their project to a non-specialist audience. Posters do not need to be about public engagement but must be engaging to the public. The winner will receive £100, free UKABIF membership for one year and free admission to the 2021 conference.

UKABIF would like to thank Cygnet Health Care for sponsoring the award programme for 2020.

For full details please see www.ukabif.org.uk/awards UKABIF aims to promote better understanding of all aspects of Acquired Brain Injury; to educate, inform and provide networking opportunities for professionals, service providers, planners and policy makers and to campaign for better services in the UK. UKABIF is a membership organisation and charity, established in 1998 by a coalition of organisations working in the field of Acquired Brain Injury..

For further information, please contact Chloë Hayward, UKABIF Email: info@ukabif.org.uk Website: www.ukabif.org.uk Telephone: 0345 6080788 facebook.com/UKABIF @UKABIF Box 2539, Kemp House, 152-160 City Road, London, EC1V 2NX UKABIF – giving a voice to Acquired Brain Injury

NRTIMES 05

10mm

CONTENTS

12 C ULTURE S HO C K Exposing an often-unspoken factor in community rehab.

0 8 N EWS

18 E M IL IA ' S M ISS IO N

The latest from the world of neuro-rehab.

Hollywood star's lead role in improving brain injury care.

30 C L INICA L PRACT IC E How the Duchess refound her independence.

2 6 FAMILIES IN FLUX Helping households make sense of a neurological crisis.

06

NRTIMES

C O NTE NT S

5 8 RUNWAY RETHI NK

34 C OVE R S TO RY

Speaking up for fashion and disability.

How Covid is changing neuro-rehab's present - and future.

62 FRO M B RAIN INJ URY TO B A FTA Dubliner's love story shines light on condition.

7 2 PUNC H D RUNK Pioneers fight back against alcohol epidemic.

NRTIMES 07

N EWS

Rugby decision misleading, researcher claims Research behind World Rugby’s tackle-height trial was “dressing up corporate messaging as independent science,” according to a researcher.

08

NRTIMES

NE W S

There's no evidence that players were given an informed choice; they were contractually compelled to par ticipate

World Rugby made the controversial decision in July 2018 to trial lowering the height at which tackles can be made, changing the definition of a high tackle from above the line of the shoulders to above the armpit line.

World Rugby introduced this trial on championship rugby players in the UK to test the hypothesis that lowering tackle height would lower concussion incidence. Five months later, it was stopped because of an increase in the risk of players getting concussion. Now, in a report published in the British Journal of Sports Medicine, researchers at Oxford Brookes University and four other UK and Australian Universities have questioned the safety and ethics of this decision.

Adam White, lecturer in sport and coaching sciences at Oxford Brookes University and lead researcher, explained in a series of tweets that players perceived that the trial would increase the risk of concussion, and that it was implemented despite their concerns.

There’s no evidence, he adds, that players were given an informed choice; they were contractually compelled to participate.

“The players are of course employed by their clubs to play rugby, so it is extremely unlikely they had the ability, or indeed the right, to withdraw from the trial, without penalty or prejudice,” he says.

“This is particularly concerning in light of the fact that an independent report, published in December 2019, discovered that a majority of players felt that reducing tackle height would result in more, rather

than fewer, traumatic brain injuries.” White says the paper that the trial was based on showed that the trial increased the risk and number of concussions.

In this study, researchers followed 12 elite men’s teams during two competitions in 2018 to 2019.

They observed 30 percent fewer concussions from the lower tackle height.

White says this study, which influenced the approval of the trial, ‘raises clear and important questions about the entanglement of corporate interests with academic research’ as many authors of the study work for, or are funded by, the rugby authorities.

World Rugby, White says, "Imposed an intervention study that harmed the brains of these rugby players, and despite them raising concerns, [World Rugby] went ahead anyhow.

"All efforts to make our game safer must be taken.

But research, particularly intervention/trials, must be conducted ethically ensuring participants give full, informed consent and can withdraw without prejudice or penalty. On this occasion, it is not evident that happened." .

White’s paper recommends that World Rugby should be supported in attempting to decrease concussions, and that World Rugby and England Rugby have all research and interventions externally scrutinised by scientists from outside the rugby community to encourage critical dialogue and mitigate the likelihood of unethical research practices.

World Rugby have been contacted for comment.

NRTIMES 09

N EWS

Concussion could lead to depression, ADHD, dementia and Parkinson’s – study A new study has revealed a link between concussion and the risk of being diagnosed with attention-deficit hyperactivity disorder, mood and anxiety disorders, dementia and Parkinson’s disease later in life.

Despite ‘clinical recovery’ from concussion typically lasting one week, a team of researchers from the University of Manitoba suspected there may be longer term effects. They used 25 years of population-based health data between 1990 and 2015, involving almost 50,000 cases of concussion from people living in Manitoba, Canada.

They found that concussion was associated with an increased risk of being diagnosed with attention-deficit hyperactivity disorder

10

NRTIMES

(ADHD), mood and anxiety disorders (MADs), dementia and Parkinson’s disease.

After analysing the population data, they found that concussion was linked to an increased risk of diagnosis of ADHD, dementia and Parkinson’s.

Women who had a concussion were at greater risk of developing ADHD and MADs, but there were no differences between men and women for the risk of developing dementia or Parkinson’s.

Multiple concussions didn’t affect the risk of later being diagnosed with ADHD, but a second concussion increased the risk of dementia, while exposure to more than three concussions increased the risk of being diagnosed with MADs. While previous studies have found

links between concussion and ADHD, dementia, Parkinson’s and MADs, most have relied on patients self-reporting their symptoms, the researchers write.

However, this study can only show an association, not cause and effect.

The mechanism behind this increased risk is unknown, but the researchers state it’s possible that the pathways of some biomarkers that are dysregulated in ADHD, Mads, dementia and Parkinson’s, namely, cortisol, are also affected after a concussion.

The paper, published in the BMJ journal, states that future research is needed to explore the relationships between concussion and ADHD, MADs, dementia and Parkinson’s in other populations.

NE W S

Researchers make baby test breakthrough A blood test could predict whether babies starved of oxygen at birth are at risk of neurological-related disabilities and conditions including cerebral palsy and epilepsy.

Neonatal encephalopathy (NE) is the most common cause of death and neurodisability in babies that go to full term, with an incidence of between two and three per 1,000 live births in high-income countries, where up to 55 percent of babies with moderate and severe cases of NE have an adverse long-term outcome, according to studies.

A team of researchers from Imperial College London, in collaboration with researchers from the US, Italy and India, carried out a test that looks for certain genes linked to neurological conditions, of which babies starved of oxygen at birth are more at risk.

In a small study of 45 babies, who were all deprived of oxygen at birth, researchers were able to identify

I t could al lo w us to d eve lop new t he r a p e u ti c

int e r ve nti o ns

changes to their genes that indicated they could go on to develop neurological problems.

The babies’ blood was tested within six hours of them being born for changes to the switching on and off of particular genes, and they were followed up 18 months later.

From this, the researchers found more than 800 genes that were expressed differently in the babies who developed neurological conditions and those who didn’t. Overall, two genes in particular showed differences.

Senior author Sudhin Thayyil, from the Centre for Perinatal Neuroscience at Imperial, said: “The results from these blood tests will allow us to gain more insight into disease mechanisms that are responsible for brain injury and allow us to develop new therapeutic interventions or improve those which are already available.”

The researchers now plan to expand this testing to a larger number of babies.

“If these findings can be replicated in a larger cohort of babies with NE,” the paper states, “It may open new therapeutic avenues and to develop new neuroprotection therapies in the future.”

NRTIMES 11

INSIGH T

Why cultural competency should be woven into rehab training Natalie Mackenzie and Eky Popat of brain injury rehabilitation service BIS Services on managing the cultural challenges in community rehabilitation.

Whe n ind ivi d ual s perce ive inj ur y i n thi s f a t a lis ti c w ay, it c a n be d i ffi c ul t to e ng a g e t hem i n reha bilit a t i o n

12

NRTIMES

Back in 2011 one of our team asked why there was a significant lack of consideration towards cultural differences within brain injury rehabilitation. It was not the first time we’d heard this question, but it further sowed the seed for a topic that is persistent and pertinent within our working practices at BIS Services, and a matter for discussion and change that must continue throughout the field. Most certainly, recent years have seen an increase in consideration and discussion regarding cultural competency and its importance in rehabilitation, which is reassuring, although these are still challenges that we must continually consider. Not just from the perspective of clients and their families but in our own recruitment, supervision and training practices.

For the purposes of this discussion, we must define our understanding and terminology of ‘culture’ so that we can best adapt our approaches. For us, it is the 'way of life' of groups of people. Different groups may have different cultures. A culture is passed on to the next generation by learning, and is seen in people's writing, religion, music, clothes, cooking, and in what they do.

Within the Merriam-Webster.com Dictionary it is defined as: “The outlook, attitudes, values, morals, goals and customs shared by a society. It is the integrated pattern of human knowledge, belief, and behaviour that depends

INS IG HT

Culture Religion Generation Nationality

Race Age

Ethnicity Education Gender

Socio-Economic Status Sexual Orientation

upon the capacity for learning and transmitting knowledge to succeeding generations.�

Our own definition is key to understanding how we engage, motivate and most of all, persevere within cultural norms. What is most important to consider however, is that culture is ever evolving, and so must we be.

So, what are these challenges which we face in community rehabilitation? They are many and they are far reaching; from the initial matching of a rehabilitation assistant, to family integration, goal setting and attainment, functional transfer and psychological interventions, as well as long term engagement. Our initial meetings with clients and their families must consider cultural differences from the outset, whether this be ethnicity, gender, age, education or any other classification under the umbrella. If the cultural needs and initial engagement of a client are not considered or appropriate, the impact may be long lasting.

We must ask what the different viewpoints are on brain injury within ones culture, and find a pathway of rehabilitation accordingly. What does brain injury actually mean to others? What is the role of family?

How is external assistance perceived? Practically, how do we manage not just language differences,

NRTIMES 13

INSIGH T

but actual terminology. In many cultures there is no direct translation for brain injury or cognition, let alone a clear understanding of roles within rehabilitation.

Born in Nigeria and moving to the UK at the age of 18, and later sustaining a severe TBI, a client we have supported for many years provided us with some powerful views of brain injury in his culture. This injury was sustained in 2001 and he still feels unable to visit his native country for fear of stigma. When asked to explain to us how his family and culture would perceive his injury he told us that TBI is viewed as a mental illness, therefore the person is “mad, dangerous, harmful, or contagious”.

Families associate disability with shame, “as Gods will” or a punishment. When individuals perceive injury in this fatalistic way, it can be difficult to engage them in rehabilitation. How can we have more power than divine intervention? That is a mountain to climb, but it can be done. What that means is we have to look at ways of bridging their cultural belief systems and incorporating different ways that families might want to access help.

They may want to access rehab, but at the same time, they may also want to engage in the use of prayer and

Sup po r t ing c l ients

in t he ir ho me c an be

ver y int ru s i ve and w e mu s t re s p e ct thei r cul t ur a l wishes

14

NRTIMES

their natural healers, and that's something we should be respecting and incorporating as part of the rehab plan.

Stigma and exclusion can keep people from seeking help, for fear of exposing disability or bringing shame on the family. We have encountered this a number of times, only being sought out when the families are no longer able to cope and are at breaking point. When those cultural roles have been altered to such an extent that there seems to be no way out or no pathway of rehabilitation to follow. One hopes that change can be made from the outset of rehabilitation, so we do not get to this point.

Another consideration must also be on the cultural needs of our staff, and we have spent many a supervision where staff are conflicted regarding client cultures versus their own. This takes many forms, from the most practical matters of diet, when we ask rehabilitation assistants to model, motivate and encourage shared meals for instance.

I recall fondly being introduced to a client's family visiting from Kuwait and their insistence that I eat with them; declining was not an option, it would have been perceived as insulting and potentially impacted my therapeutic relationship with the client. What a wonderful meal was had, sat crossed legged on the ground, full of dishes I would never have even attempted anywhere else alongside a whole generation, and what a natural insight into a culture very different from my own. I learnt so much during that encounter that was incorporated into my

INS IG HT

programme with that client. I have had many RAs tell me of their clients instance that intestines or some delicacy are tried during meal preparation tasks, and their commitment to their clients to not offend despite their own views or cultural beliefs.

There has always been a strong theme around the challenges faced when working with individuals from varying socio economic backgrounds or with differing educational experiences; again this is where matching of RA to clients is key. Shared experiences are important, and we often focus on finding a ‘hook’ to aid engagement whilst keeping those therapeutic boundaries.

When delivering brain injury education programs, we are constantly required to adjust the content to suit the cultural backgrounds of our clients, to maximise positive outcomes and to encourage engagement; and so we should. We all know that in brain injury rehabilitation there is never a one size fits all approach.

It is important to be mindful and recognise cultural stereotypes when matching staff. For example, certain cultures have gender stereotypes and when matching with the right staff we should endeavour to ensure these and other stereotypes are not reinforced. We must support our staff and ensure their own cultural needs are met alongside the clients, whether that be ensuring traditional festival practices are met, prayer times and fasting are considered, and factored into rota scheduling.

The same applies to clients; therapy appointments should not be made during these times and such matters respected and protected. Supporting clients in their home is very intrusive and we must respect the clients cultural wishes and support the clients with their cultural customs, traditions and beliefs, and ensure that this is incorporated into rehabilitation. Considerations need to be made regarding the impact of fasting or other traditions on fatigue and cognition and task planning and goal management plans adjusted accordingly.

Perhaps the biggest challenge we all face is recognising and acknowledging our own values and cultures, and not projecting these onto clients. Why should we insist on certain goals or tasks if they are not in keeping with an individuals pre-morbid practices, beliefs or experiences? We should not. Just because we may not perceive certain behaviours as

Sha red e xperi enc es are impo r t ant and we o f t e n f oc us on

finding a hook to ai d eng a g eme nt

safe, appropriate or functional, we must not assume it is the case for another individual and their family.

We must have more self-knowledge as providers in order to recognise our own specific prejudices, to manage them appropriately and avoid potential negative impact on client care. We should all be curious, rather than judgmental; and actively listen.

Really listen.

We cannot possibly cover all the challenges and issues we face here but we would encourage further reading and consideration of research. Saltapidas & Ponsford (2007) suggested that many rehabilitation models are not generally adapted to adequately meet the needs of patients from culturally and linguistically diverse backgrounds. Niemeier et al (2007) justify the importance of cultural sensitivity in everyday provider interactions with minority clients and their families. Their primary aim was to raise rehabilitation providers awareness of the unique difficulties faced by ethnically and racially diverse persons with TBI and secondly to offer practical recommendations for rehabilitation professionals who desire to improve the health outcomes of individuals from a minority living with a TBI. Considering all the issues surrounding effective rehabilitation within different cultures, it seems like the natural next step would be to educate those who are currently training and those who work in the field, and interact with patients daily, to be more sensitive and aware of those cultural differences. We must all increase our cultural competency, through education, awareness, and collaborative family working, however we define culture.

Natalie Mackenzie is managing director at BIS Services. Eky Popat is operations director.

The company provides cognitive rehabilitation and support services in the community for people living with a brain injury or neurological illness.

See more at www.thebiss.co.uk.

NRTIMES 15

TECH N OLOGY Sponsored feature

Now is the time to embrace better ways of working

By Merryn Dowson, assistant psychologist and part of the team behind rehab goal-setting platform Goal Manager A stitch in time saves nine.

Rome wasn’t built in a day.

The best things take time.

We are all too aware that some of the most important parts of our lives have been crafted, carved and developed over months and years. Consider your education, for example: you may well have been to primary school, secondary school and then sixth form college. Perhaps you went on to do an undergraduate degree. You may even have taken another leap and completed a Master’s degree or a Doctorate. This took years. You learned, revised, sat exams, sat resits, applied for places, got results, got rejected, got accepted, and made it here. One thing is certain: compared to all of this expertise, someone who completed a two-hour online course on the same topic does not come close.

We know that putting time and effort into something gives us better results than if we tried a quick approach.

We do not always lead by this example though. Despite the knowledge that great results are only achieved through hard work and perseverance, sometimes we decide just not to bother. Often, a room in our home might look cluttered, worn down and unloved and it could be made to look incredible. The walls could be painted, clutter cleared, carpet cleaned, furniture patched up, curtains updated, but it is so much effort. We see the effort it would take and keep living with it. It does the job. It’s fine.

We heard this a lot when we began to develop our software. Goal Manager was designed from within a clinical neuropsychology service with young people with acquired brain injury, and we recognised how goal setting was becoming an intimidating concept within our service and our colleagues across the field.

To combat this, we developed an online goal-setting

N o ne o f t h i s w o ul d

have be e n po ssi bl e wit ho ut t he i ni ti al

inve s t me nt of ti me

16

NRTIMES

platform which streamlines the key processes of goal setting into one system and allows members of multidisciplinary teams (MDTs) to collaborate on goal data remotely.

Crucially, it was designed to fill a hole. The more daunting goal setting became, the more it was shied away from, and the guidelines for goal setting that had emerged from the literature were falling to the wayside.

While we designed our platform to save time on completing all of the gold-standard processes of goal setting compared to doing them manually, we found that people had often not been completing them at all.

It was all too complicated.

As a result, we recognise that adopting a software solution like Goal Manager can come with its own problems to solve. It requires relearning a lot of what we know about a concept like goal setting, understanding properly how these key processes work and how they can be applied clinically to benefit clients.

It is only then that you can start to think of ways to make it more efficient. To help with this, our users are offered bespoke demonstrations, guided MDTs through meetings to help with the clinical application of the data, and training on assessments and goal attainment.

This takes time. Our users are often throwing out their previous guide and writing a new one. When surveyed,

T E C HNO LO GY Sponsored feature

however, every single one who responded said that it was worth it.

This brings us back to where we started: the best things take time; Rome was not built in a day; a stitch in time saves nine. By taking time to develop an understanding of goal setting and being able to apply it to a software solution, users experience all of the benefits of best-practice goal setting outlined in the literature both for their clients and for their teams.

Clients are motivated, rehabilitation is meaningful, important areas to address are highlighted, MDTs are focussed, clinical practice is evidenced – the list continues. None of this would have been possible without the initial investment of time.

While simple enough to read, this is no doubt overwhelming to apply to your service or practice and, with this in mind, there are some key points to remember. The most significant is that there is no better time than now. The world is slowly opening its eyes, sitting up in bed and having a good stretch after the darkness of the Covid-19 lockdown. It is not yet certain if we are going back to snooze or if we are leaping out of bed afresh. What we do know, however, is that we are heading into a brand new day. Even for those of us who continued in practice throughout the pandemic, services have been slightly paused in one

way or another, whether that be refraining from home visits or having fewer people in the office. We are all very aware that we are heading into the “new normal” rather than our old ways. Use this time to bring new and innovative ways of working into your practice. You might completely change your filing system, consider how you approach your waiting lists, or change how you approach MDT meetings. Whatever you have been wanting to do for you and your service for so long, now is that time.

Perhaps you decide that you are going to welcome change but not all at once. That works too! For users of Goal Manager, we often suggest that starting with one or two clients might feel more manageable than a whole caseload. This can help get to grips with the new concepts and ways of working without feeling like everything is completely disrupted. This applies elsewhere too. If you are wary of integrating a system into your whole service, start with one corner of it, evaluate, take what you have learned and then look to apply it more widely.

Finally, remember that all time taken to improve and grow impacts more than just what you set out to do. When people lose weight, they rarely conclude by saying they just lost weight: they often enthuse about how they feel more energised or move easier or feel more positive or experience less anxiety. This applies to any time you invest in developing your clinical practice or your service. While time spent learning how to use Goal Manager and establishing it within a caseload is designed to improve goal setting, that investment also leads to improved assessment processes, more effective meetings, improved digital literacy, increased patient involvement and so much more. The potential is enormous. To motivate you to start the process, look at what you want to achieve and how that might trigger other improvements.

While the world is still trying to drag its head off the pillow to open up the lockdown curtains, look to invest in addressing those needs you have always been aware of but never felt like you could justify the time.

Walk around your “house” and look into each room: is this the best it can be or could I give it a lick of paint?

Is now the time to bring meaningful solutions into my practice? Maybe grab a tester pot and try a new shade on the walls. Sign up for a free trial. Plan to grow and improve. Start building Rome.

To invest in improving your goal setting, visit www.goalmanager.co.uk to register for a live demonstration, sign up for a free trial or request a bespoke tour through the platform and its features.

NRTIMES 17

INTERVIE W

SameYou is only one year old, but the charity is making real changes to bran injury recovery. Jenny and Emilia Clarke share their ambitions for the charity, and the motivations behind them.

18

NRTIMES

INT E RVIE W

WHEN YOUR LIFE GETS SAVED TWICE, YOU KNOW YOU’RE ON THIS EARTH TO HELP - Emilia Clarke’s mission to improve brain injury care

Last year, Game of Thrones actor Emilia Clarke wrote in a New Yorker essay that, while filming Game of Thrones, she had two subarachnoid haemorrhages, a life-threatening type of stroke caused by bleeding into the space surrounding the brain.

She was 24 when the first one struck almost 10 years ago.

Around the time the essay was published, Emilia’s mum Jenny Clarke had a subarachnoid haemorrhage too.

Emilia’s essay was published in conjunction with the launch of SameYou in May 2019, a charity Emilia has set up with Jenny in response to seeing a lack of brain injury recovery, with the aim to help improve patients’ and carers’ experience, and remove stigma and misunderstanding surrounding brain injuries.

When Emilia told her own story last year, she said, “I told you mine, now you tell me yours”. The charity received thousands of replies. Now, Jenny has hired someone to work full time, dedicated to responding to people getting in touch about their experiences.

NRTIMES 19

INTERVIE W

and there are limited options on the NHS. “There's strong evidence, and it’s our belief, that with increased, high intensity treatment you can make huge progress, which isn’t always the message doctors tell patients after they’ve had a brain injury.”

Same You is also looking at finding ways to fund innovations that help to improve the treatment of patients in brain recovery.

While the charity is young, it is already making real-world changes.

“At the moment we’re showing we’re taking action and that we’re a credible, long-term, viable resource for people. We have a few programmes underway where we’re making a difference with action,” Jenny says.

“We've got an opportunity to do things a bit differently. We’re a nimble, agile organisation, we’re able to create a fundraiser in a few days.”

For example, when coronavirus hit, Jenny and Emilia put a call out to help fund a virtual rehab clinic for people with brain injury, in collaboration with Queen’s Square National Hospital in London. Halfway through the programme, 131 so far have benefitted from the programme.

The charity is also working with the Spaulding Rehab Hospital in Boston, US, funding a two-year programme of pilot

After brain inju r y, it feels ver y difficu lt to b elieve “When you’ve had a brain injury, it’s a very difficult thing to do to talk about it,” Jenny, chief executive of Same You, tells NR Times. “It’s about hearing stories and giving people the sense they’re not alone.”

“One of the problems with brain injury is that you can feel very isolated, and it feels very difficult to believe you can be the same as you were before, when inside, you’re the same.”

Jenny, who was previously vice-president of marketing for a global management consultancy, helped care for her daughter when she recovered, so has had experience as both a patient and a carer. Both of their lived experiences, Jenny says, puts them at an advantage.

“Every clinician I’ve spoken to believes this is right approach,” Jenny says.

Jenny argues there also needs to be more funding put into recovery.

“When we talk about health, everyone understands the value of research and how that feeds into treatment. Recovery is the third element,” Jenny says.

“But provision for recovery is inadequate. It’s a postcode lottery whether you get the care because brain injury is so complex

20

NRTIMES

you can be the same as you were before

treatments. Researchers there are looking at what happens in young adults and how resilience can play a part in their recovery.

Another project the charity has just launched is the Nightingale Challenge Global Solutions initiative, involving almost 30,000 nurses and midwives, which aims to aims to empower and equip them in brain injury care, starting on the 22 July until the 23 September.

The programme, Emilia said in a recent Nursing Now webinar about the programme, will challenge nurses to look at the whole area of rehab.

“You get a huge amount of attention when you’re in hospital, rightly so. But not enough is being done for patients and their

INT E RVIE W

You feel dou bly anxious.. .

It suddenly feels like home was the most dangerous place in the world

families after a brain injury between leaving hospital and getting back to society,” Emilia said on the webinar.

After her first brain haemorrhage, Emilia says she couldn’t wait to leave hospital and go home.

“But in the car leaving hospital I panicked because I'd been in such a safe space in hospital,” she says. “Leaving hospital feels very unsafe, it’s an alien environment.”

“When you’ve broken a limb, you have something to show the world what’s wrong with you. When you look perfectly normal you feel doubly anxious, you need to be doubly cautious about the situations you put yourself in. It suddenly felt like home was the most dangerous place in the world.

“I was incredibly lucky. I has a specialist nurse who I could call when I had another headache, or didn’t know when I could wash my hair, or felt dizzy or sick. She was on the other end of the phone and could talk me through it.”

Nurses also ‘translated’ the jargon doctors told her, a lot of which she says she didn’t understand.

“It's only when we feel safe we have confidence to feel better,” she said.

The Nightingale initiative will encourage nurses to look closely at brain injury patients and identify any gaps, and come up with solutions together.

One example of a solution, Emilia says, could be finding places on a ward where nurses can take a patient and their family to explain what has happened and what they can expect to happen next.

“Our personal experience is that patients have had such a shock

they don’t always take it in the first or second time. It takes repetition before what has happened to them sinks in,” she said.

“Ask patients how they’re feeling and listen to what they have to say, because when you’re on a ward as a patient and someone asks you if you’re okay you say you’re fine. You’re on display on a ward. Take the patient to a quieter place and ask them honestly how they’re feeling. This can have a huge impact.”

Jenny and Emilia are encouraging nurses to speak to patients who’ve been discharged and ask them about their experience of rehab, and what they think is missing, as well as medical professionals across disciplines.

“It’s important for nurses to amplify hope. A great number of people can improve a patients’ quality of life by the dedication they put into it, help empower patients to take control back and take over their recovery when they get out of hospital,” Jenny said.

While Jenny wrote in the New Yorker essay that she has made a full recovery, she says she’s dedicated to improving care and treatment for others in the position she was.

“I knew I wanted to try and give back in some way,” she said.

“When your life gets saved twice, you know you’re on this earth to help.”

NRTIMES 21

TECH N OLOGY Sponsored feature

Why assistive technology must be people-focused NR Times caught up with the co-founder of access: technology north to find out its secret to getting people engaged with the tools they need to support them.

Around four years ago, when Mike Thrussell’s caseload of people with learning difficulties and disabilities needing support with assistive technologies began to grow, he went to his wife Kelly with a suggestion.

At first Kelly, who has a background in teaching, was unsure.

"I’ve worked with people with learning difficulties for years, and I’ve seen that other people’s experience with assistive technology hasn’t always been positive, so I wanted to approach this differently,” she says.

Mike asked her to help him create something to address the very issues which can put people off using these technologies.

“I recognised that assistive technology wasn't always successful when it was implemented, and I was interested in why it wasn’t successful,” Kelly says. “In the vast majority of cases, it wasn't the capability of the technology itself, but how the user felt about using it or how well set up their support network was to enable them to use it.” Kelly and Mike decided to set up access: technology north, an assistive technology consultancy service that would support clients with brain injuries within the medico-legal sector to promote independence in

22

NRTIMES

T E C HNO LO GY Sponsored feature

A d ev i c e or pi ec e o f so ftware is not hi ng but po tenti al e nerg y unti l i t has a user

their home, school and workplace. Kelly describes her role as the “people person”, while Mike is the “techy" one – a combination that works well together. She says the aim was to shift the focus from being about the devices, to being about clients and their support network; to make people passionate about technology.

“A device or piece of software is nothing but potential energy until it has a user. Matching an individual’s need to the capability of a technology solution isn't enough to guarantee a positive

outcome, maximised independence or longevity of use” Kelly says. The company works with families to determine the barriers that people with acquired brain injuries, physical disabilities and learning difficulties face and provide solutions using assistive technologies, working alongside other professionals, including speech and language therapists, occupational therapists, physiotherapists, education consultants, neuropsychologists and behavioural specialists.

Where technology reports used in the medico-legal sector often have a focus on equipment, Kelly says access: technology is taking a different approach and making people the centre of their work.

Kelly says that one reason people, especially teenagers, who the company frequently work with, are not successful with assistive technology is because they do not have access to peer support or role models.

“We became aware that lots of young people were being given technology and communication aids that made them stand out and they didn’t see anyone else using them. Having something that makes you stand out makes it more challenging,” she says.

NRTIMES 23

TECH N OLOGY

It's i m po r tant to look at ever y c ase and situation i nd i vi dual l y to b est enabl e i nd ependence

Kelly and Mike have since employed Alastair Haigh as their assistive technology ambassador. Al, who has cerebral palsy, was supported by access: technology to achieve his GCSEs and attend mainstream college, is now employed by them to help advise people on the best assistive technology

24

NRTIMES

devices and is exactly the kind of peer support and role model, Kelly says, that a lot of young people need to see.

Al says assistive technology has been a big part of his own life, and he is passionate about understanding technology so that it can make the most difference in his own life. His aim is to apply his wide range of knowledge of technology to help others. Being people-focused, Kelly says, is what makes the company stand out, and it is important to look at every case and situation individually to best enable independence.

“We cannot foresee what technology will be around in the next year, of five or 10 years’ time, so when working with young people and adults with acquired brain injuries, it’s best when they develop an interest and passion and aptitude for technology, not for a specific device, but to recognise that technology can make them more independent and they become excited and interested.”

“We need to make sure the person’s support network is fully on board with what we’re doing

T E C HNO LO GY

We t a ke the vi ew that t e ch nolo gy i s the great e qua liser, m aki ng the imp os si bl e possi bl e

and they understand how their technology works at home with the family, and at school with teachers and learning support staff.” Most important, Kelly says, is making sure the person is engaged with their assistive technology.

“Sometimes when we meet people they’re not excited about using their technology.

"Sometimes they’re scared or worried they might break it so we have to track back and show them how use their technology for fun enabling them to have positive experience with it, then they can go onto things that are more outcome-orientated.” access: technology works with people who have had an injury as a result of medical negligence or personal injury, but Kelly and Mike are starting to get interest from families who do not have access to funds as a result of the legal process. Kelly says they are in the early stages of setting up a charity to support those without a financial settlement.

The company helps people to control their home environment, such as operating blinds, switching

on lights and opening doors. It also works to enable access to gaming and entertainment, for example Mike created an accessible version of YouTube (accessyoutube.org.uk).

The primary focus of their role, is going into schools and looking at how pupils can access the curriculum and how they might need support from technology to be more independent. “A lot of schools have access to lots of equipment that maybe isn’t being used in the right way – sometimes, we can create huge change just by going in and offering training.”

They also get involved with Education, Health and Care Plan tribunals, and make recommendations for assistive technology where needs are not being met.

The company offers ongoing support until the client feels ready to manage independently using their technology.

“We take the view that technology is the great equaliser,” Kelly says.

“Every day in our work, we see our clients, enabled by their assistive technology, making the impossible possible. We see our clients access opportunity and achieve alongside their peers - and sometimes see them outperform them!”

Kelly says the biggest measure of success is setting people off on their own path to having a better relationship with assistive technology. “Our hope is that we come on board, show people what’s possible and get them excited about it. The most successful families are the ones who get excited too – we want them to embrace technology and be at the forefront of it.

Kelly says her and Mike’s jobs are gradually involving more mainstream equipment, as larger technology companies are starting to consider human neurodiversity in their developments.

“Accessibility features on many mainstream products are really improving, becoming more readily available and more affordable,” she says, “which is enabling equal opportunity, revolutionising not only the sector we work in but the ways in which human beings are able to live their lives and achieve their goals.”

For more information on access: technology north visit: accesstechnology.co.uk.

NRTIMES 25

FAMILY

The family experience of brain injury After a person acquires a brain injury, the impact on the whole family can often be life changing as they adjust to a new reality and relationships come under intense pressure. Here Louise Jenkins, who leads the serious injury team at Irwin Mitchell in Sheffield, and Karen Ledger (KL): When brain injury occurs, it's like a bomb psychotherapist/coach who going off in the family.

Life will never be the provides therapy to clients and same again for any of family members, discuss why the members of that family. it’s important that entire families People will be shocked, bewildered and receive the support they need. overwhelmed, and they then have to go through a complicated process of adjustment, and people reach that adjustment at different stages.

The person with the brain injury will generally have a neuropsychologist assigned to support them.

Most will pay attention to people's feelings and emotions, but the rest of the family may not have any psychological support.

This situation doesn't get better without professional input, but it can get worse and people’s mental health can, and often does, spiral down.

Louise Jenkins (LJ): It’s a particular challenge if you've got someone with little or no insight. They often won't recognise the need for or be willing to engage with neuropsychological treatment until much further down the line, by which stage, the family may have entered a more advanced level of crisis and their whole family unit may be at risk of

Karen Ledger, an independent

26

NRTIMES

breakdown. There are complex emotions involved in the adjustment process following trauma which include shock, guilt and loss.

KL: That’s a scenario we see a lot. The client’s relationships may get to an advanced stage of deterioration and crisis, before they're able to accept help. This is often because there is an immense amount to absorb from their new world of injury, rehabilitation and the medico-legal process and clients do not have the psychological space to consider how they are, never mind to undertake the rehabilitation.

LJ: That’s where some of the challenges come in from the legal perspective. The compensation claim process is quite rigid in that generally speaking, only the injured person can claim for financial losses and for professional support, but we maintain that as the underpinning principle for compensation claims is to restore someone to their former lifestyle, you have to consider them both as an individual and as part of the family unit. We try to build into the claim some therapy sessions, not only for the injured person, but also for their spouse and their children.

Some defendants (compensators) say they’re happy to support that because, if the family unit breaks down and the uninjured spouse has been providing a lot of the day-to-day support, prompting and encouragement that the injured

FAM ILY

C hi ld ren a re o f t en mi s s ed a s t hey d ea l w i t h lo s s d i f feren t ly

person needs, the cost of commercial care to replace that support is significantly more expensive than the amounts you can recover in a claim for support provided by a family member. It is also about embracing the spirit of the Rehabilitation Code and Serious Injury Guide in looking at the wider family need.

KL: Often, people can't work anymore; they feel their work is taken away from them. People get their sense of identity out of work, as well as from being a spouse or a partner, a father or a mother. And if they lose their ability to earn and their relationships start to deteriorate these are often perceived as more failure and thereby serve to reduce a client’s confidence and self-worth.

LJ: It is akin to a bereavement process for the uninjured partner, yet the person is still there with you.

KL: People don't have to have a death to experience loss, and loss can activate a bereavement process.

So they’re grieving for the person they once knew, and now they've got this new person which makes adjustment to the injury complicated. And the thing about brain injuries is they’re hidden. The person looks the same but behaves differently to how they did before. It understandably takes a long time for clients and family members to really grasp the effects of brain injury, because they're often traumatised, angry, discombobulated and distressed.

The family that includes somebody with a brain injury goes through a process of understanding, just as the client hopefully does. It's a complex situation trying to comprehend what a brain injury means whilst feeling bereaved.

Family and children’s therapy is relevant too.

Children often get missed because they deal with loss and trauma in different ways to adults.

Children tend to get on with their lives, as if it’s not happening, so they need particular attention. They won't be talking about it so much, but they'll be experiencing it.

The sooner that’s managed by specialists, the better it will be for children in the longer term, giving children the best chance of allowing normal development to take place.

LJ: It's difficult because there's a significant investment of time and energy put into implementing a rehabilitation programme and support around the injured person. This is integral to the claims process. The spouse can feel as if all the focus is on the injured person and they've been left out.

From a legal perspective, we try to involve the uninjured spouse as much as possible in discussing what we're doing and why we're doing it. We try to weave in that therapy support for the uninjured spouse so they come along the journey with us rather than becoming a disrupter to the

NRTIMES 27

FAMILY

Louise Jenkins is a partner at Irwin Mitchell and leads the serious injury team at the firm’s Sheffield office.

Karen Ledger is managing director of KSL Consulting and a therapist, counsellor and supervisor with over 30 years of experience.

28

NRTIMES

rehabilitation programme because they feel excluded and unsupported. If securing interim payments through the claim to fund support is challenging at an early stage, our in-house team of client liaison managers, all of whom have a healthcare background, can provide time and input in discussing the challenges and in signposting for support both for the uninjured spouse and children as well as for the injured client. There are some really valuable resources for children, for example, which explain some of the problems that can arise in a parent who has sustained a brain injury to help them to understand and come to terms with changes in the family dynamics.

KL: People affected by brain injury can feel deserted by their partner and like a single parent. This is because they've lost their partner’s contribution to childcare and work in the home. The complexity and challenges of living in these circumstances should never be underestimated.

LJ: At the point of injury, they are in shock and just want to be there for the person who's injured. I've worked with a number of people where the grief and adjustment process is very substantially delayed.

These delays extend to weeks, months or even years.

They're in a fight/flight/freeze situation. They’re managing a situation that’s about life and death initially in the most serious cases. When the acute stage is over and they have some space to start thinking about themselves, rather than the person who's injured, they can start reflecting. It’s an emerging awareness that it's never going to be the same again, that some degree of permanence will remain with the injuries, that this is how it will be in the longer term and a realisation that you need support to adjust to the new normal.

KL: It takes a while for that realisation to come in.

I am often working with partners who are in that process of adjustment and what initially attracted them to the person pre-injury has been lost post injury, for example agile thinking and intelligence.

Moreover they now find themselves in a caring role and one where many strangers are entering their home and talking to them in alien language! It’s not surprising that for many people this is often too challenging for them to manage and why therapy is needed as soon as possible for clients to regain their own personal power as soon as possible. They will have a private listening, respectful and tender place for them when the rest of their lives are so exposed.

LJ: They don’t know where that injured person is

going to land with their recovery in the longer term.

There's a natural recovery process of a minimum of two years following brain injury, often longer, and they don't know how much recovery the person's going to make. They're living with that uncertainty for a long time before being able to understand and adjust to what the long term will look like, often with significant physical, cognitive and behavioural changes which place great strain on sustaining relationships. Independent family law and financial advice is often essential to protect both parties in the event that the relationship does break down.

KL: I believe that acquired head injury is usually devastating to the person and those around them.

However, in my experience, people are often amazing in how they find the strength to establish new ways of being and making their life work for them. Therapy can often speed up that process because clients feel heard, respected and understood, a powerful combination for a restorative process particularly when they are so often feeling powerless.

This process can help families stay together or decide to go their separate ways and with support they are more likely to do this without acrimony and additional trauma.

Observing and supporting clients and their loved ones to dig deep to find the strength and commitment to establish a new life is such an amazing privilege and honour for me.

LJ : When the claims process is managed by expert serious injury lawyers, early access to specialist rehabilitation and support will enable an injured claimant to restore their life to the best possible position and allow them to maximise their potential for the long term, restoring a sense of control and positivity for the future.

Working together with therapists like yourself Karen is essential to ensure that a multi-disciplinary network of support can be put in place in order to support an injured person in achieving their goals and rebuilding their life as an individual and as part of a family unit after a life changing injury.

The proven solution for independence in and out of a bed with a neurological condition...

Rotoflex

Rotoflex

Others

®

Theraposture supply the largest choice in quality rotating adjustable beds – designed for ultimate independence, safety and comfort • Helping individuals with conditions such as Parkinson’s, MS, MND and brain injury for over 20 years • Typically saving up to £27,000 a year in care costs and can pay for itself in 14 weeks* • Powered rotation, profiling and height adjustment

14-DAY SUITABILITY GUARANTEE

• Single button operation for complete transfers • Patented lifting frame – will not tip over • Vast range of specialist mattresses

Double combinations for couples to share

• 14-day Suitability Guarantee and 3-year warranty

World’s first powered rising heel section

• Meets BSEN 60601-2-52 (medical bed standard) • New, refurbished or rental and a buy back scheme • Free home and video assessments/demonstrations

+

+

+

+

NEW! PERSONALISED PRODUCT VIDEO ASSESSMENTS/DEMONSTRATIONS with our Occupational Therapist Book an appointment with Shaun Masters on our website calendar – free for professionals and end users

ISO 9001

BS OHSAS 18001:2007

Trading name of SN Registrars (Holdings) Ltd

8327

Freephone: 0800 834654 info@theraposture.co.uk www.theraposture.co.uk Theraposture is proud to work with:

YOUR INDEPENDENCE, OUR COMMITMENT PRODUCT AWARDS

Theraposture Limited, Kingdom Avenue, Northacre Industrial Park, Westbury, Wiltshire. BA13 4WE. Open: Monday – Friday, 8:30am–5:30pm. Answerphone messages can be left at all other times. * When two county council carers are reduced to none.

2159THERA_NRtimesAug20v2.indd 1

WINNER OF EXCELLENCE IN CARING

Scan for a Rotoflex video

30/07/2020 11:25

CLINICAL P R ACTI CE Sponsored feature

“What’s a Duchess without a G&T darling?”

Laura Nicholls, lead speech and language therapist at The Bridge Neurological Care Centre in Middlesbrough, reflects on the rehabilitative journey of her patient Angela on regaining some normality following a lengthy admission in intensive care.

Firstly there’s a couple of things you need to know about Angela before I can tell you about her journey.

She isn’t usually one to let another person speak for her but I have been given full permission to share with you all the ups and downs of her rehabilitative journey.

Angela has acquired the very fitting nickname ‘The Duchess’. This comes from her previous occupation as a community matron, her fine eye for detail, her drive for perfection and her tendency towards bossiness.

In April 2019 Angela was admitted to hospital with Myasthenia Gravis that resulted in Myasthenic crisis (respiratory failure). Myasthenia Gravis is a rare long-term neurological condition that causes muscle weakness. In Angela’s case she experienced severe difficulty swallowing, loss of voice (aphonia) and severe breathing problems. This resulted in the insertion of a tracheostomy (an opening created at the front of the neck so a tube can be inserted into the windpipe/ trachea to help you breathe) with 24/7 ventilation to assist with breathing. This emergency procedure can often cause weakness and structural damage that further complicates an individual’s recovery

It wa s a hu ge target for a la d y w ho w as

nil by mouth w i th an un s a fe s wa l lo w

30

NRTIMES

of function. This means that often the long-lasting impact of having difficulty speaking, eating and drinking on someone’s quality of life is not fully realised until the months after initial survival has been achieved.

It is the role of a speech and language therapist to provide assessment, treatment and support for individuals who have difficulties with communication, or with eating drinking and swallowing.

Angela’s swallow and voice were severely affected second to muscle weakness and poor breath support.

This resulted in poor airway protection when she was eating and drinking meaning food and fluids entered the trachea and lungs rather than the oesophagus leading to the stomach. This can cause serious health concerns as it can result in airway obstruction (choking), chest infections, pneumonia and death.

I worked closely with Angela to identify what was most important to her and what would make a difference to her quality of life and wellbeing. Angela identified that she would love to be able to have a gin and tonic and FaceTime her family and friends without them having difficulty hearing her. This was a huge target for a lady who was nil by mouth with an unsafe swallow having all her nutrition and hydration needs met via a tube into her stomach (percutaneous

C L INICAL PRACT IC E Sponsored feature

tube) and who had a very weak voice; Angela’s friends and family would often ring her but could only have a one-sided conversation as Angela’s voice was too weak to be heard over the phone.

From thorough assessment, I created an intensive swallow and voice rehabilitation programme when Angela was discharged to us in August 2019 which utilised specific muscle building/strengthening exercises to target the areas of breakdown in her voice and swallow. This programme focused on improving oral control and coordination, improving laryngeal elevation and hyoid excursion (good range of movement is required to swallow safely), improve airway protection, increase strength of cough and strengthen her vocal cords to increase strength of voice. Angela completed this programme multiple times per day. Her exercises were recorded onto her iPad for her to work through daily and support her in the completion of these.

Therapy Outcome Measures - Voice Well being

4

2

Participation

3

Activity

4

2

Impairment

4

4

1

0 0.5 1 1.5 2 2.5 3 3.5 4 4.5

Post Therapy

Pre Therapy

Therapy Outcome Measures - Swallow Well being Participation Activity Impairment

4

2

3

4

5

0

1

4

0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 5

Angela’s recovery and ability to wean from ventilation was lengthy and unpredictable at times. She suffered a number of setbacks and respiratory complications during her recovery that impacted her ability to complete therapy. However she remained determined and focused on what she wanted to achieve.

By December 2019, she made significant progress.

Through her dedication and perseverance with her rehabilitation programme she achieved her goals.

After months of being unable to eat and drink Angela’s swallow was now safe – she was able to eat and drink without difficulty or fear of choking. Angela’s voice was also a lot stronger, she went from being inaudible on the telephone to being intelligible 100 per cent of the time and being understood in all communication environments with no incidents of communication breakdown with familiar or unfamiliar listeners.

Angela continued with her rehabilitation programme and in February 2020 she attended her local flower club meeting where she addressed all 70 attendees, delivering a 10 minute speech without difficulty. This was a major achievement given that she was struggling to make herself heard to one individual in a quiet room six months prior.

It was a moment of great pride when she introduced me to the audience saying: “This is Laura, my speech therapist, without whom I would not be able to speak to you all today and without whom I would not be able to enjoy this gorgeous spread you have put on for us all.”

In March 2020 the tube into Angela’s stomach was removed as she no longer needed it to meet her nutrition and hydration needs – she could do this by eating and drinking herself.

The therapy outcome measures graphs clearly show the positive outcomes she has been able to achieve through therapy, but the true outcome is written all over her face – smiling ear to ear. Through therapy Angela did not just regain the ability to speak and swallow, she gained confidence in recovering functions that she thought she had lost forever and a new appreciation for the things in life that people often take for granted. Angela has been a complete joy to work with and one of the greatest honours of my career has been to work alongside her.

Now enjoy your G&T Duchess – you deserve it.

5 Nicholls is a speech and language therapist at Laura The Bridge Neurological Care Centre in Middlesbrough, which provides specialist inpatient neurological rehabilitation and complex care for people with neurological illnesses, acquired brain and spinal cord injuries. For more info visit www.elysiumhealthcare.co.uk.

NRTIMES 31

TH ERAPY Sponsored feature

Music in the key of R Rehabilitation journeys are increasingly being guided by the rhythmic interventions of music therapists but challenges in opening up access remain; as Chroma's Daniel Thomas explains.

Daniel Thomas, managing director of art therapies provider Chroma, developed an interest in music at a young age. However, he’s concerned that young people today aren’t exposed to enough music education, and that this will have a knockon effect on music therapy, which can help a range of people, including those with a brain injury.

“There have been massive cutbacks, a killing off of music in schools,” Thomas says, “Which has had a huge effect over many years as that side of school life has been systematically eked away and cut back.

“If people aren't exposed or brought into music education early in their lives, it probably won’t happen later on in a way that'll lead to them considering music therapy as a profession.”

“I'd be delighted if Boris Johnson and the education secretary saw the significant social value and healthcare value of having music in the education curriculum. It's almost criminal to strip it out in the way it has been stripped out by Labour and Conservatives, and it needs to go back in as matter of national urgency.”

Chroma is a trailblazer for the government’s new arts therapy apprenticeship scheme, however, which is giving Thomas hope that more people will enter the profession in the future.

“I’m hoping a much more diverse range of candidates applying to be arts therapists will come in, but it will take ten years to see the results of that.”

There’s also a need for the NHS to spend more money on arts therapy, which also includes drama and art, he argues.

T he re a re huge

unt a ppe d reso urc es wit hin a r t s therapy pro fe s s ions

32

NRTIMES

“The NHS used to be the biggest employer of arts therapy, but with various cutbacks, those jobs have gone.

“I think there are huge untapped resources within arts therapy professions, but that takes significant amounts of education.”

Thomas, however, generally feels very positive about the strides music therapy has taken in recent years. There is a growing recognition of the power of arts therapies, he says, and in recent years, a growing body of research on how music therapy can help many groups of people with many injuries and conditions.

The Covid-19 pandemic has forced professionals in arts therapy, including the roughly 70 therapists who work for Chroma, to work together, and move online.

“Covid has spurred on the profession and ourselves to open up our minds to other ways of working, while at the same time, holding onto core clinical ethics as therapists: are we doing no harm, and are we supporting that person to work towards the goals they feel are important?”

This could have cost benefits.

Conversations around this are easier today, because the profession is only now starting to talk more openly about the financial side of their work.

“For years, the economics side of the profession, how much you charge, was a bit taboo, therapists felt uncomfortable thinking about the financial aspect of what we do,” Thomas says. “But the profession is catching up to itself around this, and learning from other sectors.”

Music therapy, as well as art and drama therapy, are regulated by the Health and Care Professions Council, and arts therapists are allied health professionals (AHPs), which means they’re on the same level as speech therapists, physiotherapists and many more. Music therapists, including Chroma

T HE RAPY Sponsored feature

See more at www. wearechroma.com

therapists, work within the NHS, and in private clinical practices.

Thomas says music therapists work as key components in multi-disciplinary teams (MDTs) helping the recovering of patients with brain injury.

“We’re very collaborative – we want to follow MDT goals. Because music stimulates a diverse range of brain areas and networks, it has an impact on speech and language, on the sensory motor system, cognitive function and the emotional wellbeing of the client.”

“Music therapy connects across a hugely diverse range of areas in the brain and there’s research from neuroscience around the way in which when the brain is stimulated by music new neural pathways are created."

“It’s not necessarily fixing the part of the brain damaged in an accident, but going round those areas and reconnecting parts of the brain, that’s why people should feel really confidence in using music therapy and using music therapists as highly skilled professionals.”

Music therapy contributes to the expertise of numerous disciplines, Thomas says. Some patients will prefer to work towards their goals when music is the context through which that treatment is delivered, and there are many ways music can be used in their therapy. For example, for a client who has issues walking, the rhythm of a song could be used to help them walk, or using the melody of a song to enable a sequence of steps to carry out a particular task, such as making a cup of tea.

A patient’s engagement with therapy can be improved by playing music they know – which is why, Thomas says, music therapy can be bespoke and person-centred. A familiar song can be used by therapists, for example, to help connect a patient with their life before their brain injury and who they are now, bridging the gap between the two.

Slow music can also be used to help control anxiety by slowing down the heart rate. When a client shows signs of calming down to a particular piece of music, the therapist can share this with the MDT so it can be applied across the patient’s care.

“If their heartrate and breathing goes through the roof during personal care episodes, we can help work with the staff team to say that, from music therapy sessions, we can see that the client’s breathing slows and their heart rate reduces with this particular music."

In this case, the piece of music could be played before and during personal care so that it can be

reframed within the context of the music.

Overall, Thomas is hopeful for the future of music therapists; for the apprenticeship scheme that will hopefully boost awareness of the profession, and for the research that continues to bolster the sector.

“It’s an interesting time to be in the arts therapies, and a great time to be a music therapist."

ONLINE: Find this story on nrtimes.co.uk for a video interview with Daniel Thomas.

NRTIMES 33

COVID REP OR T

34

NRTIMES

C OVID RE PO RT

When the Covid-19 pandemic hit the UK in March, it didn’t take long for researchers, clinicians and neuro professionals to adapt, writes Jessica Brown.

HOW COVID CHANGED THE GAME

By July, a clear picture was starting to emerge of the extent to which people with brain injuries were missing out on crucial care due to lockdown measures introduced by the government.

Research by Headway found that more than half of brain injury survivors lost access to rehab. Two thirds reported that their mental health had deteriorated due to lockdown measures.

Peter McCabe, chief executive of Headway, called the findings "deeply concerning".

“The first two years following a brain injury are very important in terms of a patient’s long-term prognosis and any delay to receiving specialist rehabilitation can impact their ability to lead an independent life in the future,” he said.

“The effects of brain injury, such as problems with memory, a lack of insight or difficulties controlling behaviour and emotions, can mean that survivors face significant challenges in understanding and coping with the necessary safeguards put in place to deal with the pandemic.

“This can lead to conflict with other members of the public as a result of not remembering the rules around social distancing, or excess pressure and emotional toil being placed on carers and family members.”

NRTIMES 35

COVID REP OR T

McCabe also addressed the financial pressures facing charities.

“With local authorities under increasing financial pressure, local charities are facing an uphill battle to survive, exacerbating survivors’ fears for the future,” he said.

“Unless the government provides local authorities with adequate funding for community-based rehabilitation services, thousands of brain injury survivors and carers will either be left without support or be forced to rely on more costly state-funded care.”

The Neurological Alliance reported in July that more than 70 per cent of people with neurological conditions said their NHS appointments had been delayed, and four in 10 did not know when their appointment would be rescheduled.

Without improved capacity across neurological services, the charity warned, people with neurological conditions would risk facing further, potentially life-changing, delays.

Many people with neurological conditions were advised to ‘shield’ during the pandemic, due to being high-risk.

The government paused guidelines around shielding from 1 August.

The Neurological Alliance report, however, found that people with neurological conditions who were shielding were concerned about the risks of going out.

Half of respondents reported finding the government’s advice on shielding to be unclear, almost a third had difficulty accessing their normal food supplies and almost a quarter had experienced difficulties getting their regular medication.

Almost one in four respondents reported feeling lonely, and one in 10 felt hopeless.

When lockdown began in March, some people recovering from brain injuries were able to access support online, as health workers moved to remote sessions, including Diana Toseland, consultant clinical neuropsychologist.

36

NRTIMES

Her charity, Café Neuro York, is a social support network that allows people with long term neurological conditions to learn new skills, help others and learn to be mindful, after they’re discharged from health services.

Group members were meeting face-to-face for morning and evening meetings, and once a month there was an interactive presentation for members to enjoy.

When lockdown began, Toseland wanted to continue her twice-weekly sessions online. But adjusting wasn’t easy – Toseland found that people had difficulties getting onto the video chat app Zoom, navigating group discussions and keeping their concentration.

Around the same time, researchers were starting to investigate how Covid-19 affects the brain.

Among them was senior clinician Benedict Michael, from the University of Liverpool.

As he explains in our interview with him on on p50, one key finding was that increased stroke risk was the most common form of neurological complication in Covid cases he investigated.

This reinforced other such observations, including those by staff at Mount Sinai Hospital in New York, who made headlines when they reported a sevenfold increase in incidence of sudden stroke in patients in their 30s and 40s in a fortnight at the height of the crisis.

Neurosurgeon Thomas Oxley told the press that he and his colleagues had seen some younger coronavirus patients with mild or no symptoms experiencing largevessel strokes.

Also, a retrospective observational study of Covid-19 cases in Wuhan, China, found further evidence of links between the virus and brain conditions. In a case series of 214 patients with coronavirus, neurologic symptoms were seen in 36.4 per cent of patients. These were more common in patients with severe infection (45.5 per cent) according to their respiratory status, which included acute cerebrovascular events, impaired consciousness and muscle injury.

The study, published by JAMA Network, concluded: “[The virus] may infect nervous system and skeletal muscle as well as the respiratory tract. In those with severe infection, neurologic involvement is greater, which includes acute cerebrovascular diseases, impaired consciousness, and skeletal muscle injury. Their clinical conditions may worsen, and patients may die sooner. This study may offer important new clinical information on Covid-19 that would help clinicians raise awareness of its involvement of neurologic manifestations. It is especially meaningful to learn that for those with severe Covid-19, rapid clinical deterioration or worsening could be associated with a neurologic event such as stroke, which would contribute to its high mortality rate.

C OVID RE PO RT

“Moreover, during the epidemic period of Covid-19, when seeing patients with these neurologic manifestations, clinicians should consider SARS-CoV-2 infection as a differential diagnosis to avoid delayed diagnosis or misdiagnosis and prevention of transmission.”

In another study, researchers from Great Ormond Street Hospital for Children looked at 27 children who developed multisystem inflammatory syndrome, a severe inflammatory response that seems to be linked to Covid-19.

Four of them experienced neurological conditions and had to be admitted to intensive care for an average of one week. Their average age was 12.

These patients experienced headaches, confusion and muscle weakness, and had slowed activity in nerves and muscle fibres.

Two of the four recovered fully after receiving medications to treat their inflammation, and were discharged after 11 and 18 days respectively, while the other two to show symptoms were reliant on wheelchairs as a result of muscle weakness in their legs.

Close neurodevelopmental surveillance, the paper states, is needed so that clinicians can assess the neurological and cognitive outcomes of patients with neurological symptoms.

Meanwhile, it was feared that the impact of rising neurological risks presented by the pandemic could be amplified by a growing reluctance to report symptoms.

The Stroke Association warned that thousands of people could be at risk of severe disability, or even stroke-related death, if they didn’t respond to stroke symptoms during the crisis.

Dr Deb Lowe, NHS national clinical director for stroke and consultant stroke physician at Wirral University Teaching Hospital, said in: “We’re beginning to see some quite striking reductions in the number of people coming into hospital with the symptoms of stroke. "It appears that people aren’t seeking emergency help or going to hospital when they suspect a stroke, possibly due to fear of the virus or not wanting to be a burden on the NHS.” As many services resume offline sessions, it seems many lessons have been learnt from the pandemic, including how to better use technology in the long term, but also how to quickly adapt to meet the needs of people in this 'new normal'.

Two Headway groups , for example, found different challenges with resuming support offline.

In Portsmouth, the local Headway has had a difficult time in recent months.

Two service users died from Covid-19, and another was sectioned and taken to a secure facility after their mental

health took a downturn.

But since then, most service users gradually built their contact with the outside world again, with Headway’s help.

When lockdown began in March, service manager Deborah Robinson identified the most vulnerable users and made sure she and her team maintained regular contact with them.

The next challenge was gradually exposing them to more contact as restrictions began to ease.

“We regard it as a graduation – first is phone contact, then sitting in the garden with them, then inviting them on a walk once they’ve got confident enough to come out of their homes with us. Then eventually we’ll suggest they come to a session with the group,” she says.

“Some people are too frail or anxious, so they won’t come out. So we’ll have to carry on popping in to see them.”

Before the virus, staff members hoped service users would speak up in sessions when they had a problem, but visiting people at home has allowed staff and volunteers to pick up on issues faster and get to know them better.

“One staff member met a service user in his garden, and noticed that the recycling bin was overflowing with alcohol.

"We knew he’d been a drinker in the past, so the staff member talked to him about his drinking, teasing information out."

“He said he was drinking a lot, so we’ve been able to put in place goals to help him cut down on his drinking and put him in touch with AA, as well as various other things to help with a problem that reared its head in lockdown.”

Employees and volunteers, she adds, are also getting better at texting group members and touching base.

Forty miles west in Salisbury, Headway arranged Zoom groups every week, but recognised that this option wasn’t suited to everyone.

“We were conscious to get actual face-to-face contact again, so as the guidelines have changed, we’ve thought about how we can work with that,” says Sarah Allen, service manager.

In recent weeks, online groups have continued, but staff members have started arranging small group meet-ups in various locations, including the outdoor café at Salisbury Museum, which Allen says provided a good learning opportunity.

One of Robinson’s major concerns in Portsmouth is how service users will react when they see other people not wearing masks or standing too close, and are told they have to adhere to guidelines themselves.

Allen, however, hopes meeting up in public places will help service users slowly become accustomed to these new ways of life.

NRTIMES 37

COVID REP OR T

The clinic preparing for a second lockdown 38

NRTIMES

C OVID RE PO RT

The pandemic forced many neuro-rehab services to switch their practices to online. As restrictions lift in the UK, many services are breathing a sigh of relief and are starting to resume face-to-face services. But when we spoke to neuropsychologist Richard Sealy in August, he was balancing the resumption of face-to-face services at his clinic, The Rehab Practice, with efforts to ensure the best possible outcome from a second wave of coronavirus.

Richard Sealy's neuro rehab practice was hit significantly by the pandemic.

“It was almost like a wall went up where we couldn’t access or treat our clients,” he says.

Within two weeks, the clinic was working with telehealth services to resume its work with clients.

“We have to think differently, now and moving forward. It’s the not knowing, the possible second wave. As a practice, we’re thinking about how we can regenerate ourselves to access clients, as well as educating clients around their fear and in the unknown, which has been challenging.”

In the last couple of weeks, as regulations around those who are shielding are lifted, practitioners at The Rehab Practice are able to go back into see clients in care homes. Part of their work now is to equip them for the possibility of a local lockdown, or second spike of the virus.

“We found people in difficult situations where they couldn’t see family, and staff haven't got time to provide levels of socialisation in all circumstances,” Sealy says.

“So we tried to get care home clients set up onto service so they can communicate with family members.”

I t wa s a lmo st l i ke a wa ll we nt up w here we couldn't ac c ess o ur clie n ts

NRTIMES 39

COVID REP OR T

It's revol uti onar y to hear and see family mem bers they haven't had ac c ess to . We're abl e to pro gress their rehab and o ffer hope.

40

NRTIMES

This means familiarising them with devices, even if it’s just to communicate with family members over WhatsApp or social media. Not only will this offer benefits of socialising, but will also allow practitioners to see how clients are progressing from a distance.

“It’s revolutionary to hear and see family members they haven’t had access to. We’re able to progress their rehab services and give them more hope, as well.”

Sealy has also been setting up clients with activities, such as the NeuroBall by Neurofenix, for whom Sealy is a clinical advisor, alongside their therapy, which allows users to do arm and hand rehab exercises, in their homes, via telehealth, to use alongside their therapy. (find this story online at nrtimes.co.uk for an in-depth interview with NeuroBall's founder).

He’s also thinking about what other activities he can encourage clients to do at home.

“We're thinking of a second wave,” he says.

“When individuals aren’t working, when they’re in lockdown and can’t do things, they can become very demotivated.”

Sealy has been concerned with how clients can stay motivated during lockdown, and has started

C OVID RE PO RT

‘Functional Friday’s' on the clinic’s Instagram account to help suggest practical things people can do to keep motivated.

Now they’re back in people’s homes and care homes, Sealy and his colleagues are aiming to set clients up so they can have better contact with each other if the UK goes back into lockdown, or if clients are hit by a local lockdown.

“Our approach is getting people familiar with telehealth with the view that if there’s a second wave, they’ll be more familiar with communicating with family members. Part of our training is demystifying gadgets, and making technology as accessible as possible.

“We also work with a lot of people who live alone so they’re quite vulnerable, so it’s thinking about the wider picture, not just their rehab needs.”

Another challenge Sealy is facing is making clients who are coming back into the clinic feel safe,

including writing newsletters and guidance for clients so they know the precautions staff are taking.

“It’s trying to predict the future, and it’s likely that reducing people’s anxiety will be a huge thing, so being a safe practice is very important.”

Although Covid-19 has posed a risk to those with brain injuries, Sealy says his clients who live alone are also at risk of neurological decline during this time, due to staying inside and not interacting with people.

Sealy says he’s preparing for ‘what ifs’, encouraging clients to think about if lockdown were to occur again.

“It’s important for those living independently to be as independent as possible.”

They may also benefit from using technology to order equipment for rehab, or facemasks, for example.

“Signposting has become a significant aspect of what we’re doing, and trying to get people to take more ownership of their rehab.”

Respect & Restore Specialist residential care and rehabilitation for adults with acquired brain injuries.

• Portfolio of services to meet a variety of needs • Innovative person-centred care • Unique ‘family’ environment • Focus on social integration • 30-year proven track record The Richardson Partnership for Care is now Richardson Care still proud to be an independent family business.

Call us on 01604 791071 to arrange a visit or email admissions@richardsoncares.co.uk

www.richardsoncares.co.uk The Richardson Mews, Kingsland Gardens, Northampton NN2 7PW

RPC Neuro Rehab Times H/P Ad FEB20.indd 1

NR

TIMES 26/02/2020 20:14

41

COVID REP OR T

Game changing neuro-rehab opportunities are emerging as a result of the coronavirus crisis, argues health and social care investment expert Boda Gallon.

Looking on the bright side The Impact of the Covid-19 pandemic has been multi layered.

Yes, we’re faced with a fragmented health and social care system, continued uncertainty, and a gloomy economic outlook.

There are, however, positive opportunities for investment and service redesign within NR and the wider specialist healthcare marketplace.

Increased investment interest for this most resilient of sectors, combined with a clearly identified need for positive change, should drive the creativity needed to embrace opportunities and deliver the much needed integration, improved productivity and efficiency of services across health and social care.

This positive outlook, however, still comes with a need to understand changes in our behaviour, to embrace change, to break down cultural barriers and focus on opportunity planning.

All of which is much easier said than done.

A key lesson that has been brought home to us during the Covid-19 pandemic is that heroes are people. Ordinary, but extraordinary, people. Once we get past fighting fires and lockdown fever most experts agree that things will never be the same. The key reason for this can be found in our primal brain and how we act and continue to live under a state of fear. The neuroscientific term for this is “a somatic marker,” as coined by Antonio Damasio.

I believe that Covid-19 is a negative somatic marker that we’ve all had installed in our brains over the past several months and is likely to have a powerful, lasting impact on how we behave, but also a positive impact on the aspects of the cultural changes required for the health and social care marketplace to develop.

Change needs to go deeper, and Covid-19, as our generation’s

42

NRTIMES

C OVID RE PO RT

negative somatic marker, is probably the best reason to change we will ever witness.

Covid-19 could also finally be the catalyst for the political will required to drive the full integration and parity between health and social care. It is no real surprise to find the recent disclosure of Camilla Cavendish’s plans that social care could be brought under the control of the NHS to honour Boris Johnson’s pledge to “fix the crisis in social care”.

This will also present opportunities and require new ways of working for people, but this will ultimately drive better and more seamless service experiences for all our patients, clients, residents, customers and consumers.

We are going to find ourselves in an entirely new online environment, with an entire generation of consumers and service commissioners expecting to interact via screens and having the aspiration and confidence of services being delivered in a ‘Covid-19 free’ environment. This new virtual hybrid world will need to be delivered with empathy to help everyone overcome the negative Covid-19 somatic marker and still meet the basic human needs for relationships, touch and social interaction.

The perceived threat of Covid-19 does not mean that new services cannot be launched or repositioned. The opportunity is to develop more flexible services able to meet all the new behavioural, political, and environmental drivers of the ‘Covid-19 game changer’.

Providers and their people need to respond to this opportunity and reposition from fighting fires and coping around how things have always been, to repositioning ahead of the curve and innovating services towards what will be a new normal.

Digital transformation To date the adoption of digital technology to help improve productivity and efficiency across the system has often faced multiple cultural barriers, with people often sabotaging initiatives as they either feel their role, profession or revenue streams are threatened. Covid-19 has forced everyone to look at the current barriers in a virtual way and employ different ways of working.

Hopefully, this perceived threat now presents a clear opportunity for providers and professionals to deliver complimentary and long-term hybrid solutions for their clients and staff teams that embrace the best of digital and face to face interventions, training and support.

Productivity & efficiency

Digi Integration

The delivery of community rehab has always faced productivity and efficiency challenges relating to logistics and the supply of and access to suitably skilled professionals, especially in more rural and harder to reach communities.

The proposed long-term somatic marker of Covid-19 now requires services and providers to be nimble to create longer term holistic solutions of their own, coordinating the muchfragmented array of technology options.

There is a need to embrace AR/VR/AI/IOT and to learn from and adopt best practice solutions from the UK and abroad to ensure much-needed efficiency, productivity and value are provided at the same time.

The positive outcome of this burgeoning digital transformation, like Covid-19, is also multi layered. Offering a renewed focus on flexible working, employee support, management and an array of ‘wellbeing’ opportunities for staff recruitment and retention.

Covid-19

Solutions

NRTIMES 43

COVID REP OR T

Healthcare settings This digital transformation is most keenly required to help support and shape the future of various healthcare settings. Existing commissioning and strategic planning intentions were already focused on provision away from hospitals and more institutional environments towards community settings with more holistic and social models of care. The impact of Covid-19 will now hopefully see this process accelerated.

Although the wider roll-out of Covid-19 testing and potential vaccines is critical, providers need to review how the design and operation of care homes can be focused on delivering a ‘Covid-19 free’ moniker. Enlightened providers need to ensure that cross infection mitigation and the flow of people, process and supplies are given an increased priority. The ability to offer digital triage and re-establish a more effective working relationship with GPs and primary care is essential to plan both avoidable admissions to and discharges from hospital and to provide the level of clinical support that has so often been missing during this pandemic. Repositioning care homes from what has been perceived as the riskiest place for people to be towards being the safest environment possible has to be a clear goal; as well as a PR opportunity.

A focus on delivering flexible and safe space within residential services is essential to provide for increased independence, community and family integration and improved social inclusion.

New building designs in development need to respond to this now, and existing services will need to take a more strategic review of their estate for the medium and longer terms.

New models of care already seeking to deliver coordinated pathways from hospital to home, need the potential integration of health and social care to truly flourish and develop, but the vision must not stop there. The extended integration and creative use of housing options is essential along with digital transformation to maximise potential clinical and financial outcomes and deliver the best quality of life for people. There is a lot to be learned from each other. Previously fragmented sectors need to look vertically up and down patient pathways and supply chains, flex their services, upskill and share staff, embrace elements of isolated good practice and design into their own facilities and services.

The re is a lo t to be l earnt from e a ch other

Embrace the somatic change To maximise value together, disruptive innovation driven by Covid-19 needs to be embraced. The independent sector can fully support NHS strategy by complimenting the NHS and building on the many successful collaborative partnerships developed during this pandemic. Significant public goodwill and the potential political momentum to finally drive health and social care integration can now be leveraged to force past the multiple barriers to change.

Opportunity exists for game changers willing to take advantage of keen investor interest for a market that has proven to be the most resilient in the face of a global pandemic. This inward investment into our sector can only be a further benefit forcing much needed change, new competition and opportunity to drive service innovation. Ultimately and most importantly this will deliver better impacts and outcomes for service users, their families, and our colleagues.

We cannot afford to stand still and need to respond to the wider behavioural impacts of Covid-19 to reposition services, partnerships and networks to ensure new models of care and rehabilitation are (re)designed and delivered in more flexible and digital enabled environments. This will ensure that proactive providers can truly respond to the future needs of customers, service commissioners and an emerging new normal to deliver even stronger, sustainable business models.

Proactive and future proofed business models are what any Investor from owner operators, to specialist private equity and bank funders will be looking to support and develop.

Hopefully, this article will help stimulate some debate and more ideas so we can share best practice and experience together.

Boda Gallon is a health and social care consultant. Connect with him via www.bodagallon.com. Find this article on nrtimes.co.uk for links to more expert commentary from Boda.

44

NRTIMES

Allows high intensity repetitions in a fall safe environment.

NOW INCLUDING:

Increases motor learning early on in the rehab stage.

Used in a range of conditions including: Stroke MS Parkinson’s FND Brain Injuries Incomplete Spinal Cord Injuries

www.sports-medical.co.uk sales@sports-medical.co.uk

PRECISE PARTIAL WEIGHT BEARING Ensure you keep getting this magazine www.nrtimes.co.uk/update

Once you have updated your details

CHANGED JOBS OR MOVED ADDRESS?

you will also be able to

getting Neuro Rehab Times,

nominate someone else

go to nrtimes.co.uk/update

who you think should be

and follow the nstructions.

getting the magazine too.

Stay ahead by following NRtimes

To ensure you keep

@editorNRTimes

company/nrtimes

COVID REP OR T

Five ways Covid-19 may change litigation

By Richard Biggs, senior associate at Irwin Mitchell specialising in serious injury litigation.

46

NRTIMES

C OVID RE PO RT

Litigation, as with the world in general, has changed significantly in 2020. We could not have ever possibly foreseen how during this year we would all have to move rapidly to working remotely and digitally. It may well have accelerated changes in many firms towards digitalisation and a more agile way of working. It is likely that solicitors sitting behind desks each day in a crowded office might be a thing of the past.

How will this huge change which has been thrust upon us affect the way we run our cases? Inevitably, there will be changes which are obvious; for example there are very likely to be more remote court hearings. It may well be that costly expert conferences in person are less common and no doubt a defendant at the cost budgeting stage will argue for a reduction in the expert phase because conferences or expert appointments can take place virtually (thereby reducing the amount of travel time). I have given thought in this article about how the pandemic might impact on litigation over the coming years and how it will affect the way we run our cases in the future. I have set out five potential ways in which our way of working may change and the possible challenges we might all face.

1.

well be resistant to such an approach, but interim payment applications are going to become ever more important to secure early funds to ensure that claimants have the best possible opportunity to access rehabilitation quickly. We have seen that lockdown has unfortunately already had a significant impact on rehabilitation as, in many situations, clinicians have been unable to provide hands on therapy. The need to have an effective rehabilitation programme up and running as early as possible is paramount.

To secure early interim payments means ‘front loading’ a case, namely running a case proactively right from the start; in the form of obtaining early preliminary expert evidence, witness evidence and drafting an outline Schedule of Loss.

Interim payment applications may need to be made at a very early stage The NHS has been put under huge strain over the last few months. Thousands of our routine operations have been cancelled. There is going to be a significant backlog for treatment in the NHS when lockdown is eventually eased and this means that clients, who may have waited a long time for surgery, may face an even longer wait.

It should always be a matter of good practice to seek interim funds at the first available opportunity to allow our clients to undergo privately funded treatment. It has long been well established (Law Reform Act 1948) that the claimant does not have to rely on statutory services for treatment.

We must act proactively and decisively in making early interim payment applications to allow a claimant to access privately funded treatment to avoid any delay in waiting for such treatment or rehabilitation under the NHS. A defendant may

NRTIMES 47

COVID REP OR T

3.

2.

Loss of earnings claims are up for grabs It remains to be seen what arguments the defendant might raise when faced with loss of earnings claims at joint settlement meetings or a trial. For the claimant’s part, the coronavirus pandemic may be used to advance arguments in support of a larger loss of earnings claim. For example, where a claimant has been involved in an accident pre 2020 but may be fit for some sort of work, there may be an argument that he has a significant handicap on the open labour market. Nobody knows what an economic recession might look like in the coming years or what level of redundancies might be linked to Covid-19. We can advance an argument that even where a claimant might be fit for work, the prospects of any residual earnings are limited (particularly where a claimant is disabled under the Disability Discrimination Act). It may well, therefore, be open to a claimant’s solicitor to argue on behalf of his or her client that there is a long-term loss of earnings claim because there are so few jobs open and available to the claimant. Conversely, it will be interesting to see how the defendant approaches some loss of earnings claims. Take for example a claimant who was injured pre-2020 but was working for a firm who has now ceased trading as a result of Covid-19. Would the defendant seek to argue that absent the accident, the claimant would have lost his job in any event and therefore the loss of earnings claim should be capped at the point when the claimant's employer closed?

It is potentially a novel argument and one which might not find favour with a trial judge, but I can foresee circumstances where it will inevitably be advanced and when it might well be successful.

48

NRTIMES

The parties should be able to case manage without the court imposing directions Although the courts have coped admirably with the lockdown by moving swiftly to remote hearings, there is inevitably a backlog in the listing of some hearings. For example certain hearings, such as trials, may well not be suitable to take place remotely. Experience can vary nationwide, and whilst in London the courts have been able to operate effectively to minimise backlog, this is not always the case with courts in other parts of the country. It is likely that in the majority of cases the lifetime of an average case will have been prolonged because of the pandemic.

A number of experts have been able to virtually assess claimants, but this has been variable and experts in some disciplines, such as in the field of neuropsychology, have had to delay assessments until they can be safely done in person.

The will mean that large numbers of expert appointments have not taken place and therefore there is going to be substantial backlog of assessments in some disciplines when lockdown is finally eased further. I think it is inevitable that cases which you would have expected to have settled in the next 12 months might well take another year or so because of the delay in obtaining some expert evidence.

The Civil Procedure Rules have always required the parties to co-operate, see for example paragraph 1.4 (2) (a) which encourages ‘the parties to co-operate with each other in the conduct of the proceedings’. The court will want to see evidence of collaboration. For example, I have very recently received an order listing a costs and case management conference (CCMC) in five months’ time, which reminds the parties to attempt to ‘make such progress as is practicable in relation to matters such as disclosure and witness evidence’.

A CCMC is a hearing before a judge where a timetable for the litigation is set and the parties are ordered to take certain steps by a certain date to progress the case to a trial. The order I describe above encourages the parties to agree certain steps in the litigation before the CCMC, such as a date to exchange lists of documents and witness statements. But why stop there? It is open to sensible parties to agree for a date of exchange of expert evidence, and even to attempt to timetable a case in such a way that there is very little for a judge to decide at any subsequent CCMC. It will require collaboration and pragmatism, but we’ve seen lots of examples of this over recent months and I hope it will continue beyond the pandemic. It may well be in all the parties’ interests to seek a quicker resolution to a claim than waiting an inordinate length of time for a CCMC to be listed. Delay is not going to help a claimant in most circumstances and progress will always be beneficial for all involved.

C OVID RE PO RT

4.

Cost budgets might need to be completely reworked At a CCMC, the judge will also order ‘costs budgets’, which permits the parties to spend a specified amount of time and money in various different phases of the case. I have described how there may well be significant delays in litigation because not only will experts not have been able to examine claimants in person, but the courts have not been able to list some hearings, whether that be a CCMC, pre-trial review or trial. This means there will be a significant amount of directions which have not been complied with.

We saw that the Rules Committee early into lockdown permitted the parties (until the end of October) the ability to vary directions by agreement by up to 56 days without a court application. In many situations, this will not be enough and an application will need to be made (usually by consent and the court will often be amenable to such an application given the extenuating circumstances) for a wholesale variation of the case management timetable. What does this however mean for costs budgets? Whereas previously a case might be budgeted on the basis of reaching a trial in the next 18 to 24 months, you may find that the trial is now much further away. This could potentially mean further disclosure, for example if you have a case manager involved, there will be much more case management work to factor in to the issue / pleadings phase or disclosure phase within the budget. You may find that there are some phases of the ordered budget which are now simply not enough because of the extended lifetime of the case. For example, will witness statements need to be updated? If a case is prolonged for another 12 months, do you need to factor in taking further witness statements to reflect a change in functioning, work or rehabilitation; or even to describe the impact of Covid on the claimant’s life? Will the case that has been listed for a split trial because of uncertainty regarding the claimant's long term prognosis, now no longer require a trial on liability only because of the passage of time, and is it capable of being heard in one trial? There are numerous different contingencies to bear in mind when considering

whether the costs budget which was set pre-lockdown is now still sound. I suspect that there will be numerous cases whereby costs budgets may need wholesale redrafting to take into account delays and also potential new developments (for example if the claimant has unforeseen surgery or his condition deteriorates / improves).

We must be extremely vigilant as always in checking and rechecking our costs budgets and I would advocate reviewing every single costs budget you may have on file to check whether it is still fit for purpose. Any applications should be made in a timely fashion, given the aforementioned potential delays waiting for a CCMC listing.

5.

Periodical Payment Orders may be offered more frequently The Ogden tables are statistical tables used by the legal profession to calculate future losses in personal injury claims. In July 2020 the 8th edition of the Ogden tables were released, and one key change in the table was the reduction of life expectancy. The country has seen a massive loss of life due to Covid-19. When faced with a claim by an older claimant, I would not be surprised to see the insurer be more willing to offer PPO’s to conclude the case. While PPO’s are common place when there are concerns of life expectancy, they might become even more attractive to an insurer where there is a risk of a second wave, or even a more localised spike in infections, and potentially those at risk have a heightened chance of loss of life. This might sound extremely cynical, but where insurers might previously have been reluctant to offer PPO’s, preferring to settle the case on a lump sum basis to get the claim off their books, there may now be a wind of change which means that insurers are keener to offer PPO’s on the basis that there is a potential heightened risk of a shortened life expectancy due to a possible second wave, particularly if the claimant is in a vulnerable category and / or might live in a care home.

Summary What has been so encouraging to see over the last few months is the way that parties have been able to collaborate, co-operate and find new and innovative ways of working together. I have seen some fantastic examples of the parties being pragmatic and sensible to achieve a fair solution for all. Hopefully the ‘darker days’ of the post Mitchell era when parties were almost encouraged to catch each other out is long gone (in 2013 The Court of Appeal upheld a strict judgment in a landmark case involving then government minister Andrew Mitchell which established a hardline approach by the courts towards costs budgeting. This judgment was then used by some parties to seek an advantage in litigation where one party had failed to comply with the strict application of the rules). I hope instead that as lockdown gradually eases and as a country we begin to emerge from this crisis, a sensible and pro-active approach to litigation continues.

NRTIMES 49

COVID REP OR T

THIS IS THE FIRST OPPORTUNITY FOR THE NEUROSCIENCE COMMUNITY TO UNDERSTAND THE VIRUS COVID-19 and the brain study scientist Benedict Michael talks to NR Times.

50

NRTIMES

C OVID RE PO RT

Senior clinician Benedict Michael hasn’t slept more than four hours a night since February, writes Jessica Brown.

While many in the field would say science is a slow process, the opposite is true for Michael since he started leading groundbreaking research into the neurological complications caused by Covid-19.

“When it became apparent the virus had taken hold in Italy, I said to the guys, ‘We’ve got to get something up and running’,” Michael, from the University of Liverpool, tells NR Times.

Michael led a similar programme during the H1N1 epidemic over a decade ago, when he noticed that, while the number of people who developed neurological complications was low, they were

NRTIMES 51

COVID REP OR T

We ne ede d so methi ng qui ck a nd easy to use f or bus y doc tors running a ro und

often the most severe cases.

Michael wanted to find out: what is Covid-19 doing to the brain, how is it doing it, what makes a person more at risk of these complications, and how do these patients recover? And so, the National Surveillance Programme for Neurological Complications of COVID-19 was born – just in time for Covid-19 coming to the UK. Michael and his team developed a way for doctors to record the symptoms of patients experiencing neurological and psychiatric complications through their membership organisations, collaborating with the Association of British Neurologists, British Paediatric Neurology Association, British Association of Stroke Physicians and the Royal College of Psychiatry.

Michael applied for permission to use the data, so he could see complications doctors were seeing, and developed a series of online portals that members of the four bodies could access, to fill out a form.

“We needed something quick and easy to use for busy doctors who are running around,”

52

NRTIMES

Michael says. When the Spanish flu took hold 100 years ago, there were reports of patients developing neurological symptoms, Michael says, but they didn’t have the tools to understand what was going on in the patients.

They didn’t know, for example, if the virus was directly affecting the brain, or if it was the body’s immune response to the virus.

“This is our first opportunity as a neuroscience community to understand the role of the virus and the immune response."

The researchers first excluded easily recognisable causes for conditions, such as older patients with

C OVID RE PO RT

W ha t d o es thi s d o to the mental s t a t e o f a person al read y at risk of d eve loping a mental heal th disorder?

several existing conditions, who might already be confused and agitated.

The data, published in the Lancet journal, has revealed that 50 per cent of patients with alterations in their mental state were under the age of 60, which Michael says are cases of unexplained neurological and psychological complications.

The most common reported brain complication was stroke, experienced by 77 of the total 125 cases researchers looked at. Most of these strokes were caused by a blood clot in the brain, while nine were caused by haemorrhage and one was caused by inflammation in the blood vessels of the brain.

Seven patients showed inflammation in the brain (encephalitis).

There could be several mechanisms at play in cases where Covid-19 affects the brain in this way.

“We currently think the chances of the virus getting into the brain are rare. We do see inflammation when looking at MRI brain scans, but no virus in the spinal fluid.

“We also don’t know to what extent the psychological pressures of being hospitalised during the context of the pandemic.

“They can’t see their family, and doctors are gowned up and wearing masks. What does this do to the mental state of a person already at risk of developing a mental health disorder?”

While this is the first nationwide study of neurological complications associated with Covid-19, it’s important to remember that the findings are based only on cases that are serious enough to need hospitalisation.

However, Michael’s work is ongoing. Alongside his team, he plans to focus on looking at patients’ immune response, and carrying out geometric testing to try to understand genetic differences in patients who experience more severe symptoms.

The team also hopes to collaborate with other parts of the world.

“I’ve been contacted by patients and clinicians around the world, thinking about how to bring data sets together."

“The number of cases seems to be coming down in the UK, but colleagues in the US might be seeing a second peak and might be able to identify other patients, to help understand this mechanism.”

NRTIMES 53

COVID REP OR T

Wales sets example of how to manage rehab in the pandemic

In the wake of the Covid-19 pandemic, neuro rehab professionals acted fast, according to Chief Allied Health Professions (AHP) therapies advisor for the Welsh government, Ruth Crowder.

54

NRTIMES

“Instantly, we realised the implications of the pandemic,” she says.

“We looked at what we could do remotely with services and developed a rehab framework really rapidly. We identified that this was going to become an issue, so Wales moved really quickly to implement a framework.”

The Welsh government supported the introduction of ‘attend anywhere’ video consultation and telephone advice for primary care across a range of services across several provisions, including numerous allied health professionals in neuro-rehab. It’s been rolled out for a year to test its suitability, with a view to continue using it in the future, Crowder says.

“We introduced a number of electronic tools to assist people, including remote telephone assessments where people can phone up for advice whenever they need it, and some services put advisory videos online to help people undertake rehab in their own environment when they’re not coming into services.”

Most services looked at a major risk assessment of who needed to be seen because of an urgent or critical need, and who can be safely managed remotely.

“There were different tools around different ideas, so it was about matching tools to individuals. It’s important we don’t leave people out and alone but that everyone can equally access support.”

The rehab framework published has considered four main population groups.

“We identified a need for rehab for those recovering from Covid-19, those admitted to hospital, and who were managed in community, and also a demand for people with other conditions who may have had services paused or delivered in different way.

There’s also potentially going to be rehab needs for those who may not have come forward but had developments during this period. A&E attendances went down, and we don’t know at the moment if there was a drop in incidents or if people didn’t present at services because of lockdown, so we don’t yet know what the rehab demand will be for that.”

The fourth group is those shielding and isolating who perhaps haven’t undertaken as much activity as they normally would do, who were coping without intervention before but, as a result of reduced activity levels, have become more deconditioned.

“We’ll need to think carefully about what the demand is and how we respond to that with timely services.”

C OVID RE PO RT

The experience of staff since the beginning of the pandemic, has been dependent on how services adapted in response to the initial crisis, and the rates of Covid-19 cases in and around Wales and the kinds of surges that were anticipated or experienced. Some allied health professionals were redeployed to deal with acutely unwell people, and boards and trusts across Wales are now planning how they return staff to services, as well as how rehab services will meet demand.

“Our expectation of the pandemic is increased demand for neuro-rehab, and growing evidence is showing the range of needs people have following Covid-19,” says Crowder.

However, the hard work and adaptability of professionals working across neuro-rehab services has given Crowder confidence that the next challenges will be met.

“If any good comes out of this horrendous situation,

it’s the way people have worked flexibly and creatively to identify the needs of patients. It’s been inspirational to be part of. Getting the framework up and running came down to an amazing collaborative and multi-professional approach. It’s been a wellintegrated process; not just clinicians, but also service planners and managers, who’ve worked as huge collaborative group. I’m the lead but that’s nominal –it’s been a huge team effort, really worked outstandingly, where working collaboratively across boundaries, keeping the patient centre of all planning, has been exciting, and I hope this continues.”

Crowder qualified as an occupational therapist in Cardiff in 1983 and has practiced in both the NHS and social services.

She has worked as a lecturer in Cardiff University and as a policy officer for the Royal College of Occupational Therapists.

NRTIMES 55

RESEARCH

The researcher trying to change TBI support after her brother’s suicide

People who’ve had a traumatic brain injury (TBI) are three to four times more likely to have suicidality, which includes serious thoughts about taking one's own life, suicide plans and suicide attempts.

56

NRTIMES

Alyson Norman, lecturer in clinical and health psychology at the University of Plymouth, decided to interview 19 people with TBI from a brain injury rehab unit in New South Wales, Australia, to better understand this.

In her subsequent research paper 'Living with suicidality following TBI', published in the journal Brain Injury, she outlined some common themes. Participants experienced a loss of sense of self and chronic, but transient, suicidality, regardless of the person receiving long-term support.

But she also found that they engaged with protective factors, such as social support and spirituality.

Implementing these as coping strategies during long-term rehab, she urges, may reduce the levels of suicidal distress.

Norman has noticed a few high profile international studies in the last few years highlighting that the rates of suicidality among people with TBI is particularly high, and that we’re lacking understanding of what that’s like for people on the ground and what protective factors might help them come out other side of their suicidality.

“We need to know the protective factors, how we can people through this. Although the findings are bleak, there are also positives – having spirituality and a sense of independence is important in getting people through the other side of suicidal thoughts.”

It took Norman nine months to go through 20 transcripts to look for themes.

“One of the saddest conclusions from the paper was one of the things that was protecting people from fulfilling their suicidal thoughts was that they often didn’t feel physically capable,” Norman says.

“They were concerned they wouldn’t be able to because of their physical disability. But as sad as that was, it wasn’t a huge surprise to me.”

That’s because Norman’s own brother, Tom, took his life six years ago aged 43.

RE S E A RC H

My brothe r i s a cas e s tu dy o f wha t ca n go horribl y wrong

“He said this to me several times,” she says.

Norman has just written a book about her brother, ‘Life and suicide following brain injury’.

She says she was never interested in writing about her brother’s story simply for the sake of telling it, but when she became involved in research looking at communities, she became aware that his wasn’t an isolated story.

“He shared his story with a lot of people with brain injuries; my brother could provide a useful case study of what can go horribly wrong,” Norman says.

In 1993, when he was just 22, Tom was left with severe brain damage after a car accident. In her book, Norman writes about his childhood leading up to the accident.

“He had a series of mild traumatic brain injuries (TBI) in childhood, so he was already potentially exposed to some neurological difficulties, and was at high risk of having a more severe TBI,” Norman says.

Norman’s book describes her brother’s time in hospital in inpatient rehab and then in the community. After his injury, Tom suffered with mental health issues and long-term difficulties with substance misuse.

“There was a lack of community support, and poor interactions of social care, which culminated in his suicide in 2004.

“His story is also interwoven with how little we know in terms of how common these problems are, and reflections from my own private practice as a therapist working with people with family members with TBI.” From the perspective of individuals and their family members, Norman says it’s important to help communicate to them that they’re not alone, and that other people are going through the same experiences.

“And that there are organisations, however few and far between, there to support people, raising awareness people with TBI have when accessing community services.

“It’s also about educating health professionals in community settings and social care settings to identify that they sometimes aren’t able, or don’t have the knowledge, to pick up on the difficulties people with TBI have, which can lead to them falling through the net, as was the case with my brother, with the hope that people will stop falling through those gaps,” Norman says.

Norman says funding is a problem, as well as a lack of knowledge. But the lack of knowledge, she says, is associated with a lack of training, which can be traced back to poor funding. And the infrastructure of adult social care, she says, needs to change.

“In adult social care, it’s become very difficult for people with long term care needs, as social workers are moved from case to case, rather than working on one case for a long time. That disconnect means there’s a constant turnover of staff, from whom it’s difficult to get to know clients and understand their specific needs.”

Because of the lack of support and services for people with TBI, families end of carrying a huge amount of the burden, she says.

Now that Norman has done qualitative, in-depth research, she knows she needs to get quantitative data to ‘show the significant numbers of people experiencing these problems’.

NRTIMES 57

COMMENT

How can clothing help people affected by brain injury?

Inclusive fashion may seem obvious to those with a disability, but the fashion industry has a long way to go, argues Emma McClelland, founder of inclusive womenswear label Kintsugi Clothing.

58

NRTIMES

C O M M E NT

I

t seems strange that, while the fashion industry is often experimental and boundarypushing, designers are reluctant to relinquish conservative practices elsewhere.

Diversity on the runway is infamously poor.

As you filter down to the high street, it improves slightly, with fractionally better representation of plus-size and disabled people. But the looks you see in shop windows aren’t usually designed inclusively, regardless of whether the model wearing them has a difference.

As a matter of semantics, some of the people I’m referring to when I write the world ‘disabled’ don’t identify as disabled. I also use this phrase to mean people who are living with the physical effects of brain injury – effects like muscle weakness, for example – and people whose impairment is temporary, such as people who are recovering from surgery.

Clothing can add value for many people when it’s designed inclusively, not just for the size 8-10, white, non-disabled and tall, toned male ideals

NRTIMES 59

COMMENT

we’re used to. Don’t disabled people just wear “normal” clothes like everybody else?

Some can, and do. Likewise, some people need – or simply prefer – clothing that has been adapted specifically to solve challenges presented by certain impairments or health conditions. This is why adaptive clothing is so important.

Take, for example, a woman whose brain injury has caused ataxia. The tremors in her hands make fastening small buttons a frustrating endeavour.

Adaptive clothing might come into play here with a blouse that appears outwardly to have buttons down the front but actually has concealed magnets that make dressing easier.

60

NRTIMES

Or, say someone is using a wheelchair because their brain injury has caused hemiplegia. Trousers designed to be worn in the seated position – with a specific fit, longer leg length or higher back – are a specific solution. They’ll probably also have pockets located further down the body (rather than at hip level) to make them more accessible when seated, and belt loops to help with pulling them up.

These are just some examples of the power of adaptive clothing design. ‘Adaptive’ and ‘inclusive’ design are often used interchangeably but there is a difference. If adaptive design refers to clothing that has been designed specifically to meet certain needs, inclusive design refers to clothing that has been designed with some of those needs in mind.

Sadly, when it comes to fashion, that imagined customer is rarely disabled. Items are made without the company thinking about how their products will be used by people with disabilities.

This is where inclusive design comes into play.

Fashion brands should be creating clothing that

C O M M E NT

anybody can wear, not just a specific person with specific needs. For the designer, it’s about thinking about how certain elements could add value to someone with a difference, whatever that difference may be.

For example, using certain fabric types and not using scratchy internal labels might make the world of difference to someone who experiences sensory irritation as a result of their condition. For any other person, those features might be nice. They might not care about them at all. But they are still there for those who do. They are ‘inclusive’ features.

Inclusive design matters because we live in a world where 15% of the population experience some form of disability. Any one of us can develop a disability – even if temporarily (after a leg or arm break, for example).

Brain injuries are an example of how someone’s world can change in an instant. If that happened to me, I wouldn’t want to be faced with a world so inaccessible that clothing is a struggle and dressing myself is exhausting. Nor do I want to feel limited in terms of style. This is why I set up Kintsugi Clothing: to create beautiful, accessible apparel that is inclusive of a range of body types.

Fashion is something we should all be able to enjoy and it’s not as difficult as some brands might think to be inclusive about your design process.

Ask disabled people what would make life easier for them and think about how you can work some features into your designs that will add value.

Inclusive design is a developing niche and I, for one, can’t wait to see where it goes in the future.

Sa dl y w hen i t c omes to f a shi o n, the i m agi ned cu sto mer i s rarel y d isabl ed ...Thi s i s w here inc l usi ve d esi gn c o mes in

NRTIMES 61

INTERVIE W

FROM BRAIN INJURY TO BAFTA Hannah Currie lovingly captured her uncle’s struggle with brain injury through a lens, and shared his story with the world, as Jessica Brown reports.

When they first got together, Paul and Lindsay Devereux didn’t seem like the most obvious match.

Paul was from Dublin, and he ticked more than a few of the stereotypical Dubliner boxes – he liked a pint and didn’t take himself too seriously, and he had a thick Dublin accent.

Lindsay was the sensible one. She was a nurse from Scotland, with a master’s degree. But they clicked.

They both loved travel and adventure, and travelled the world together, driving through the US in a campervan.

On their return, they settled down and built a home together in the mountains outside Dublin. Paul worked as a painter and decorator – until he had an aneurysm ten years ago.

He had surgery to remove a second aneurysm from his brain, leaving him with a brain injury, and severe shortterm memory loss.

Now, Lindsay gets up at 5am to get to Dublin, where she works as a nurse, and on top of this she helps care for Paul.

The couple are in debt, and they don’t have much support outside immediate family.

But this year, things took a turn for the better after a documentary about the couple, made by their niece,

62

NRTIMES

documentary filmmaker Hannah Currie, premiered internationally and won a Bafta Scotland award for ‘best short film’.

Currie, 31, has wanted to make a film about her uncle since the injury. She worked in media, but worked on the production side, helping other people make their films.

“I always wanted to be a documentary film maker, but thought it wasn’t accessible to me as a woman, and as someone who didn’t have the confidence in her abilities,” Currie tells NR Times.

“But the urge wasn’t going away, and I decided to go back to university and do a documentary directing course, which was the first time I picked up a camera.”

After completing her Masters in Screen Documentary course, Currie successfully applied for funding from the Scottish Documentary Institute and finally got to work on the documentary she’d been wanting to film for ten years. But it was a much more difficult experience than she could’ve anticipated.

“It was a really hard film to make because there’s so much to their story,” she says. “Paul’s aneurism and the fall-out from that affected every area of their lives.”

Paul smokes and drinks, she says, and doesn’t understand why this puts his health at increased risk, given his medical history.

But his maladaptive behaviours were one of the reasons she wanted to make the film in the first place.

“Some members of my family got frustrated at Paul because he kept on drinking and smoking. They said he needed to take responsibility for his behaviour.

I was curious to hear his side of the story; if you’ve gone through this and your only crutch is smoking or

T hey s a i d he s ho uld t a ke res p o ns i b i li t y f o r hi s b ehavi o ur

INT E RVIE W

drinking, then why not? I was keen to explore that.”

But somewhere along the way, the film became more about Lindsay, and not just Paul.

“Paul’s not going to get better, he’ll make small improvements but he’s always going to live with his injury. But I hope my aunt will find light in the situation.”

Currie hopes her aunt can start speaking to other families going through this and help them.

“If something good can come from this, I think she’ll feel validated that her decision to stay in this situation and sacrifice her life for another person will be worth it.”

Her grant was for a short film, and Currie found it difficult to know which bits of footage to leave in.

“When I finished it, I thought it missed the mark. But when people started contacting me, especially families of people with brain injuries, saying the film had had a big impact on them and brought them a lot of comfort, I realised I was being harsh on myself.”

Currie says she felt enormous pressure to do the film, and her family, justice, especially because the funding came from public money.

She also struggled to get a balance between handling

NRTIMES 63

INTERVIE W

it sensitively and making something that people would want to watch.

“When you’re making a film, you’re making a piece of entertainment. It needed to hold people’s attention long enough to get an important message across.”

The film’s title, ‘That Joke Isn’t Funny Anymore,’ references Paul’s habit of repeating jokes.

“It’s funny and bizarre to watch, then it becomes not so funny. But I wanted to do him justice, because he does talk about things other than jokes.”

She was in her early twenties when it happened, and

A lot of f rie nds ab andon you w hen this ha ppens

64

NRTIMES

she remembers her uncle being a ‘burst of energy’.

“He’s a great guy. He hasn’t changed. If you catch him on a day where he isn’t too fatigued or he hasn’t had a drink, you can have a conversation with him, but he’ll forget things when he gets tired.”

Currie had sleepless nights over the decisions she made when editing the film, but her uncle was ‘over the moon’ when she sent him the final cut.

“Even though it might’ve been difficult for him to watch, he needed to sign it off. I sent it to him and he said everything in it was true.”

Currie says the feedback she’s had since the film’s release has been ‘overwhelmingly positive’. It premiered at DOC NYC in New York and DOCFEED in the Netherlands, and Currie took Lindsay with her.

“She’s been suffering in silence for ten years and had to get on with it and provide. A lot of friends abandon you when this kind of thing happens, because they find it difficult to be around someone who displays this behaviour,” Currie says.

The reaction to the film is helping her learn to believe positive feedback and be more confident in her abilities.

“The first minister Nicola Surgeon tweeted about it, she probably didn’t feel the need to be nice, she probably just liked it,” Currie laughs.

“I might not be super confident, but I have empathy with my characters and I’m able to make people feel confident enough to tell me their stories,” she adds.

You can watch That Joke Isn’t Funny Anymore on BBC iPlayer.

NOW OPEN

Lowther dementia hub

Image shows Redwood lounge with acoustic dampening helping to provide a calming environment for patients to relax in

Enhanced support for people with complex dementia Our new specialist dementia hub supports people with progressive neurological and physical conditions who also present with complex needs, including significant cognitive impairment and behaviour that may challenge or impede care.

At the heart of our approach is an expert team who instinctively understand the needs of people experiencing cognitive decline, combined with an environment incorporating extensive dementia-friendly features and technology that enable people to live well with a life-long or deteriorating condition.

Core features of our village-inspired hub include: • Supportive technology and design • End of life care with family suites • Extensive indoor and outdoor activities • Care zones, including for those people in behavioural crisis

Getting in touch For more information about Lowther dementia hub, or to make a referral t: 0800 434 6690 (we welcome text relay calls) e: admissions@standrew.co.uk w: stah.org/dementia Registered Charity Number 1104951

Lowther’s outside space encourages activity and allows patients to maintain familiar routines

INSIGH T

Vestibular problems after brain injury NR Times reports from the disorientating world of one of the lesser known post-ABI challenges.

66

NRTIMES

INS IG HT

O

ur vestibular system, located in the inner ear, assists with balance and tells the brain what position the body is in; if it’s upright or lying down, for instance.

Usually our eyes will turn the opposite way to our head because the vestibular system helps to keep things in focus.

After a brain injury, people can develop Benign Paroxysmal Positional Vertigo (BPPV), where the tiny crystals in the inner ear that control this mechanism become dislodged. This can cause vertigo when the head suddenly moves, which can lead to disorientation and sickness.

In some cases, the trauma to the brain can damage the ear canals and disrupt feedback to the brain, affecting a person’s hearing.

“Clients can present very tired, like they have brain fog, because the brain is working extra hard to do tasks that, before the injury, they did without thought,” says Clare Bates, a vestibular audiologist at NE1 Hear.

Pa tients ofte n think i t's i n t hei r hea d - bu t i t's a re al condi t i o n Early intervention is key, says Bates, as well as not being dismissive of odd symptoms people might describe. This means educating as many people as possible to recognise the symptoms to look out for so patients can be streamlined for treatment.

But vestibular problems often aren’t the first thing that comes to the mind among medical staff when looking after a patient with a head injury, says Bates.

“A lot of clients I’m working with are three years down the line before vestibular injuries are looked at. There’s a lack of education. It can take such a long time for patients to get well enough to move around enough. And then, patients often think it’s all in their heads – but it’s a real condition.

“Someone in a car accident, for example, could be laid down for months without being exposed to many movements, and it’s not until later on that they realise they’re dizzy when moving their head or trying to walk.

“With the right person picking up on symptoms, though, vestibular rehab can work an absolute dream,” adds Bates.

For Lisa Robinson, allied health psychotherapist at Newcastle Upon Tyne Hospitals NHS Foundation Trust’s major trauma unit, this means educating healthcare professionals, so that, rather than thinking dizziness is just a part of having an injury, they delve deeper, asking a few more questions and doing more assessments for BPPV. For many patients, dizziness is one part of several problems they experience daily. But it can be a barrier to the rest of their rehab.

“If we treat it, it means they can then get on with their rehab,” Robinson says.

One form of treatment is the Epley manoeuvre, which helps crystals in the inner ear get back to where they should be and involves turning the head and lying down. It can be done in less than five minutes.

“Some patients, however, are nervous about doing the manoeuvre as it causes them to feel dizzy, and it’s human nature to avoid that,” Robinson says.

“Trying to encourage patients to adopt head positions when they’re experiencing dizziness can be challenging, but for a lot of patients, their dizziness is one of most troubling symptoms.

“If we reassure people that treatment will help with dizzy symptoms, most of the time they’re quite keen.”

Where it becomes more challenging, Robinson says, is when there are other injuries, such as fractures, or being prohibited by a neck collar, which means the treatment will need to be modified.

The manoeuvre can significantly reduce dizziness, but there’s a risk they can come back out again.

High functioning clients can be taught how to do the manoeuvre themselves, but outside of the hospital, there are many other ways therapists are helping patients with vestibular injuries in their everyday lives.

NRTIMES 67

INSIGH T

“Some of my clients can feel dizzy and unsteady when they look up, like they’re going to lose their balance. Loud noises can also be really disorientating for people,” says Gail Archer, clinical innovations lead and clinical lead occupational therapist at Neural Pathways.

“It can be really isolating for people. Some clients don’t want to go out to busy areas,” she says.

“One client couldn’t go to the local shopping centre because the patterned floor made her feel uneasy, and there was lots of movement around her. All the noises and feedback going into her visual field made her feel unsteady, like she was going to fall. She’d grab onto shelves in supermarkets.”

People think you 're dru n k b ec a us e the problem is hidde n

Public transport can be difficult, too, for someone with vestibular injuries. Even a train going past at the train station, or having to stand and walk towards a seat on the bus, can be challenging.

“People think you’re drunk – there's a public perception because the problem is hidden,” Archer says.

“Several clients have reported that people deal with them as if they’ve been drinking; it can feel like they’re being stared at because they can walk quite staggered with their feet apart to give them more stability.

“There can also be a lot of anxiety associated with BPPV, and they can develop a fear of going into the community, which can lead to low mood.”

Graded exposure is one treatment that can improve and manage symptoms, Archer says, which can help people manage their symptoms and cope when things do happen.

“We expose the person to symptoms that make them dizzy in the hope that they will lessen over time. Graded exposure could mean progressing from standing at the train station for 15 minutes to getting the train to a busy place and sitting in a coffee shop to have a drink,” she says.

“Avoidance makes it worse – you have to do that rehab to gradually expose to symptoms and

68

NRTIMES

resilience to having them.

“It can be easier for higher functioning clients who are usually mobile and able to take things on independently, but carers can also help by taking people out to exercise. “ Archer says vestibular problems require a multidisciplinary approach. Her clients often have involvement from neuropsychology to help with mood management, and physiotherapy to help with exercises, as well as audiology to help with assessment at the nature of a patients’ vestibular problems.

Similarly, Bates sees patients from neurology, psychotherapy and cardiology, but says each patient is different.

“No one case is identical to another. I have to think outside the box and give personalised exercises, get to know clients and build a rapport with them that you don’t get in a lot of specialities.

“I wouldn’t give unrealistic expectations, but the rule of thumb is that if you have good muscles, joints and vision, in theory there’s definite potential for improvement. It’s important to give people manageable goals.”

        

INSIGH T Sponsored feature

Whatever the level of injury, it's important that patients receive the very best treatment, rehabilitation and care as quickly as possible.

Legal advice may also be vital.

Paul Brown, Associate Solicitor within the Serious Injury Team at Burnetts Solicitors, says: “Part of the issue following vestibular injuries is that often they are not detected straight away particularly following head and brain injury. As confirmed, vestibular symptoms can be very intrusive and often entrenched and it is only through multi-disciplinary working that these symptoms can be fully addressed.

“The first step in a legal claim is however ensuring that a full medico-legal assessment is undertaken by a consultant in audiovestibular medicine or specialist ENT Surgeon.

This should include where possible objective tests of the vestibular system to confirm the full extent of the injuries sustained.

“The symptoms can often fall into three main categories these being vestibular, brain injury and

70

NRTIMES

psychological related and it is only be addressing all three areas in this group of patients that sustained recovery can be achieved. This will normally mean that the therapy team will need to include a neurophysiotherapist with experience of treating vestibular injuries, occupational therapist, audiologist and neuropsychologist. Although depending on the extent of the brain injury other therapists may also be required.

“If symptoms are not addressed quickly the symptoms can become entrenched with many patients presenting with avoidance behaviours which can be mistaken for malingering. Many of my clients have been subjected to video and social media surveillance after being instructed by defendant insurers as a result. It is in my submission human nature to try and avoid something which makes you dizzy and nauseous.

“Therefore the treatments provided are intended to increase tolerance to the dizziness and nausea symptoms and attempt to reduce their overall effect on daily living. This can be a long process and whilst many experts will suggest that symptoms can be fully resolved my experience is that this is often a life-long condition which requires long term treatment, support and care to be included within any legal claim.

“Therefore where there is a legal claim having a legal team who are experienced in vestibular injuries is therefore very important and can often make the difference in obtaining appropriate treatment and support for the remainder of life.”

X HT XX INS IG Sponsored feature

Cheatsheet: Vestibular problems after brain injury Vestibular injuries can have a dramatic and life changing impact not only for the person injured but also for those that are close to them. The ability to maintain our balance and navigate ourselves in the outside world is vitally important.

Head injury and whiplash injuries can often disrupt the internal vestibular system, resulting in many different problems with balance and dizziness. This in turn can have a detrimental impact on recovery in other areas.

The specific conditions that can follow trauma include: > Benign Paroxysmal Positional Vertigo (BPPV) BPPV is normally caused when the crystals of the inner ear are dislodged from their usual position and build up in the semi-circular canals, thus disturbing the usual movement of endolymph fluid. This makes people sensitive to specific kinds of movement, such as lying down or turning. Balance can also be affected when standing or walking.

Episodes of BPPV will often make people feel like the room is spinning round. This can often be more pronounced during the early morning or when someone has been lying down for long periods. > Post-traumatic vertigo Post-traumatic vertigo is sometimes used as an umbrella term for many of the conditions described below when they follow a head injury. Alternatively, it can refer to dizziness after head injury, in the absence of other more complex clinical feature. > Labyrinthine concussion This term refers to symptoms of hearing loss, dizziness and tinnitus which occur after head injury, but without signs of direct injury to the labyrinth. > Traumatic endolymphatic hydrops This condition is caused by an abnormal build-up of endolymph fluid in the inner ear. The increased pressure in the inner ear leads to periods of intense

dizziness. Some people have this condition due to a condition known as Ménières disease.

However, it is sometimes caused by a head injury, in which case it will normally be referenced in the medical records as traumatic endolymphatic hydrops or post-traumatic Ménières disease. People with the condition will normally experience periods of intense dizziness (vertigo), along with sounds in the affected ear (tinnitus), fluctuating hearing loss, loss of balance and a feeling of pressure, or fullness, in the ear. > Visual vertigo People who experience visual vertigo will normally complain of dizziness and unsteadiness which is triggered by busy environments with lots of visual stimulation. Symptoms include loss of balance, dizziness, sweating, fatigue, nausea, vomiting and disorientation. However people will react in different ways and this can often be linked to conditions like BPPV. Often people suffering from this condition will find it difficult to cope in crowded environments or being a passenger in a car or train. Some people often have great difficulty looking at computer screens for long periods, especially screens that have scrolling text.

Visual vertigo is usually triggered by movement, which is sometimes referred to as motion sensitivity.

One common trigger that has been reported is being in a busy supermarket especially where there are highly-stacked aisles.

For information about an upcoming webinar on post-brain injury vestibular problems see www.burnetts.co.uk.

NRTIMES 71

INSIGH T

Stepping up the fight against alcohol-related brain injury Alcohol-related brain injury (ARBI) is becoming more widely recognised, but specific rehab services for the condition are surprisingly rare‌

72

NRTIMES

INS IG HT

W

ith few dedicated units for patients with ARBI, many patients in need of specialist care instead find themselves in a hospital or even an elderly care home.

ARBI is characterised by prolonged cognitive impairment and changes in the brain due to chronic alcohol consumption.

The average age of diagnosis in men is 55, and only 45 for women – following at least five years of excessive alcohol consumption, of around 50 units per week in men and 35 for women.

ARBI is not a degenerative condition, with up to 75 per cent of patients recovering to some degree with the correct support; and the first three months following diagnosis are recognised as key in a person’s recovery. Access to appropriate provision, therefore, is even more crucial at this time.

In February, UK-wide charity Leonard Cheshire opened a residential unit in Northern Ireland to help some of the many patients in need in the country. It is the first facility of its kind on the island of Ireland.

The 14-bed unit, near Belfast, opened inconveniently – after years of planning – just as the COVID-19 crisis was emerging.

Its work goes on, however, with the centre taking patients from across the country, though initially from the capital and surrounding areas.

The residential centre aims to support residents over a two to three-year period, although that can be shorter for some patients. It helps them to live independently, by building the life skills and confidence to do so.

Naomi Brown, clinical lead at the centre, joined Leonard Cheshire late last year to oversee the opening of the facility, following an extensive career in brain injury work and in being part of multidisciplinary teams.

She says: “The background here in Northern Ireland is that the acquired brain injury (ABI) service is really well structured and established but for ARBI, often the person wouldn’t meet the criteria for addiction services, but their needs would not be such that they needed to be admitted to hospital, or even fulfil the criteria for ABI services, so they would fall through the cracks.

“The provision they receive would often come from the care sector, but to end up in a care home at what could be a very young age is not appropriate either.

“There is a real lack of options. Their care managers

recognise they aren’t in the appropriate setting for them, but through a lack of alternatives, it is very difficult.

“A lot of symptoms are very similar to those under the influence of alcohol, difficulty with balance and memory for example, which can make ARBI difficult to diagnose.

“Often it can be something like liver failure that gets them into hospital, but then it becomes obvious there are cognitive issues there too.

“Our centre only has 14 beds, which we don’t pretend is going to answer the scale of the problem, but the decision to restrict it to that number is that we don’t want quantity over quality. To try and accommodate huge numbers would risk the patient-centred approach that we are really proud of, so we wanted to keep it on a small scale.

A lack of alternatives makes things ver y difficult

“But there are 14 places here at any one time for people to get access to the specialist rehabilitation they need, so we are really pleased to be able to offer this.”

With the centre’s goal being the independent living of its patients, a resident-led rehab plan is created for each individual, based around their individual goals and aspirations.

It is delivered by Leonard Cheshire’s team of rehab assistants, supported by clinicians, occupational therapists, physiotherapists, speech and language therapists and neuropsychologists who come in to hold sessions with the residents, and overseen

by Naomi.

“From the minute someone is admitted to us, we are already planning for their discharge, even though that may be a long time and a lot of work away.

NRTIMES 73

INSIGH T

“From the very start, it’s about the individual, it’s absolutely not a generic approach, even though the ultimate outcome for everyone may be the same. Most people who move in do want to live independently, so if that’s their goal and we will do all we can to help them achieve that, with a plan individualised for them.

“Some people will come to us and we realise they won’t be here very long as they do very well very quickly, but for others, they are going to be with us for two or three years.

“Some people arrive and love it here and say they don’t want to leave, which is a great reflection on the work we do and the centre we’ve created, but the ambition is that the point will come where they realise they don’t need us anymore.

“Through the work we do and our interventions, we can make very good progress. We’ve had some people here already who have been in quite an acute state but the progress they make brings joy into my heart.”

One such patient is David* who, despite only being with the centre for a matter of weeks, has made significant progress in his recovery.

74

NRTIMES

Prior to moving to Leonard Cheshire, he lived in a nursing home for two years.

Before his arrival, Naomi remembers he had low mood, minimal spontaneous conversation and spent long periods of time in his bed sleeping.

He had no clear weekly routine and lacked any scheduled therapeutic or recreational activities.

Naomi says: “David initially required a significant amount of support to initiate activities, engage with others or even leave his room. He has slowly adjusted to the active therapeutic programme in the unit and his mood has improved significantly.

“His mobility and exercise tolerance has greatly increased, he participates in group activities, is now more spontaneous in conversation and has developed facial expressions. David has been able to self-identify rehabilitation goals and discovered a new love for playing the drums and guitar.

“He is in the very early stages of his rehabilitation but having spent three months in the ARBI unit, the change is his quality of life is already dramatic.

“He engages in an individual, weekly timetable which

INS IG HT

We wa nt peo pl e to be c omfor table wit h t he o utsi de w orl d

includes activities of daily living, physical, cognitive and social activities, and is reportedly very happy in his current placement. Once the COVID-19 restrictions are lifted, we very much hope to begin reintegrating David to the local community and making future plans for his discharge.”

David’s experience is one which the unit is keen to replicate, by engaging patients from the earliest stages of their arrival at Leonard Cheshire in building a new and healthier daily routine.

“We are always keen to introduce routine, as that is so important in the longer-term. Where some people have maybe traditionally watched TV all night then get up into the afternoon, we try to create a new routine with lots of support services available in the morning. A healthy routine is what we want them to have when they go back home,” says Naomi.

“We encourage people to do things for themselves – to get up, make yourself breakfast, maybe do some gardening or help with the cleaning, all things which promote the ability to do things independently.

“If they put the washer on, they’ll need to go back to it when it’s finished. We have rehab assistants on-hand to support them, but we do actively encourage independence.”

Everyone has an individual timetable for the week based on their own interests, combined with their clinical requirements, which centres on promoting reintegration into the community.

“It’s very individualised, so if someone wants to do an online course or learn how to cook for themselves, or learn a musical instrument, we’ll focus on that. We have a fantastic team here who will turn their hand to anything for the benefit of our residents,” says Naomi.

“As well as activities in the centre, we do a lot in the community, or rather we did before COVID-19, but that will resume when it’s safe to do so. We did sports activities, yoga classes, bowling, it’s not just your classic physio. We want people to be engaged and comfortable with the world outside.

“We will always ensure residents have support once they leave us, and are setting that up long before they go.

“If there was someone who was with us who wasn’t from Belfast, we would use resources we knew were transferable to where they lived, so they didn’t leave us and not know how to access support.

“We build up these links with community services in the relevant discharge areas, so ideally the person will already be confident at being independent and will have the added assurance of knowing they continue to be supported.”

The Leonard Cheshire centre’s launch came amid changes to Northern Ireland’s legislative backdrop with the implementation of the Mental Capacity Act (NI) 2016. This has new deprivation of liberty regulations, a significant new introduction for the country and its approach to capacity and consent.

Naomi says: “When planning for the opening of a new centre, a global pandemic wasn’t on the radar, and for it also to coincide with the new mental capacity legislation meant it was a really busy time for us in the early stages, the COVID-19 aspect of which we could not have foreseen.

“The pandemic did present challenges for our residents, many have a certain level of confusion so it’s difficult for them to always remember that they can’t be close to someone else, they have to regularly wash their hands. There is a lot of prompting which leads to a certain amount of frustration. While they are watching these things on TV about how COVID is affecting the world, it’s hard to relate that to everyday life.”

New referrals continue to arrive during the pandemic, from both hospital discharge and moving from a care home environment, although happily the Leonard Cheshire unit has remained COVID-19 free.

“We were keen to admit new residents and take referrals from hospitals and care homes, subject to extra measures being in place to protect ourselves and our residents.

“We wanted to continue to support hospitals and free up beds, but also to offer the appropriate care to people whose specific needs through their ARBI diagnosis meant they would be better in our centre than a hospital environment or care home.

“This has certainly been a challenging period in which to start our ARBI unit, but we have come through it well together so far and we look forward to continuing to develop ourselves as we come out of the pandemic and go into the future.” *Name changed for anonymity.

NRTIMES 75

RESEARCH

By Rae Hughes, clinical psychologist and Pete Fleming, clinical tutor and consultant clinical neuropsychologist.

Adjusting to life after a brain injury involves coming to terms with, and adapting to, changes, which often span multiple areas of a person’s life, such as hobbies, employment, and interpersonal relationships. Understandably for many individuals, their life following a brain injury can look completely different to before.

The term ‘self-discrepancy’ refers to the difference between versions of ourselves. For example, a person may have a ‘pre-injury self’ and a ‘postinjury self’. These two versions of self may be completely different, whereby following a brain injury (post-injury self) a person is unable to engage in work or hobbies in the same way they were before (pre-injury self). While many individuals may strive towards getting back to how they used to be, in some instances this may be unrealistic and unachievable.

Take the example of Mr Smith, who before his brain injury was a keen runner, but now has weakness in one side of his body and chronic fatigue. After months of intense physio, Mr Smith is still unable to walk unaided or for long periods of time.

His physio believes that further recovery in his mobility is unlikely. Furthermore, the regular marathons that Mr Smith used to complete are now out of the question, but this doesn’t stop Mr Smith from wanting to be able to do this.

Why redefining who you are after a brain injury could be the most important aspect of recovery 76

NRTIMES

RE S E A RC H

This drive to get back to his ‘pre-injury self’ drives a self-discrepancy between how he used to be and how he is now (pre-injury vs post-injury self).

Our research paper, ‘Shame, self-discrepancies, and adjustment after acquired brain injury,’ aimed to explore how these differences in individuals’ pre-injury and post-injury selves may be linked to an experience of shame, and to consider whether these factors predicted their adjustment.

Shame was felt to be an important factor to study in relation to self-discrepancies, due to it occurring as an emotional response to negative evaluations of the self, which can lead to a person feeling unworthy.

Given that self discrepancies exist due to evaluations between states of self, we wondered if a negative self-discrepancy would exist alongside shame. As suspected, the research found that the more negatively a person viewed themselves after a brain injury compared to before, the higher their experience of shame.

Mr Smith finds that he can’t help but think about how he used to be able to run for miles, but now struggles to walk to the end of his street. As running was such an integral part of his identity, he often finds himself feeling as though he is now flawed in some way, as though he ‘should’ be able to get back to running, even though this is no longer possible.

Understandably, the research found that participants who perceived negative differences between themselves before and after the brain injury, not only experienced higher levels of shame, but also experienced poorer adjustment. For the purpose of the research, adjustment was measured as emotional wellbeing and quality of life.

To summarise, individuals who perceived a negative difference between how they were pre-brain injury and how they are post-brain injury were more unhappier, more anxious and had lower levels of

"The more negatively a person viewed themselves after b rain inju r y, the higher their experience of shame"

general wellbeing.

These findings show that selfdiscrepancies are a really important aspect to adjustment and recovery following a brain injury. If individuals strive to return to tasks or a way of living that is no longer possible, they are likely to feel frustrated, which could lead to poorer emotional wellbeing and adjustment generally.

Managing and reducing the self-discrepancies should be one of the aims of psychosocial adjustment post-brain injury.

So how do we support individuals to do this?

Although not explored in this paper, other research has suggested that creating a new ‘updated’ sense of self could break this cycle, which means accepting the present situation, and redefining who

NRTIMES 77

RESEARCH

It could b e ess ent ial for good ps ycholog i cal wellbeing and adjus tme nt

you are to reflect these new circumstances.

Many individuals will need the support of a neuropsychologist to help facilitate this journey through adjustment, with third wave cognitive behavioural therapy models including compassion focused therapy and Acceptance and commitment therapy, lending themselves to this process.

In the example of Mr Smith, it could be that although he’s no longer able to compete in races, he can volunteer his time at a races, supporting runners to register, or as a marshal. While this isn’t the same as running in the race himself, it could offer the chance to socialise, talk to likeminded individuals, and gain a different sense of achievement.

78

NRTIMES

In conclusion, the process of redefining your sense of self following a brain injury could be essential for good psychological wellbeing and adjustment following a brain injury. This does not mean an individual has to completely let go of who they were pre-injury, but rather that aspects of their identity may need to be altered slightly.

Rae Hughes is clinical psychologist at Humber Teaching NHS Foundation Trust. Pete Fleming is clinical tutor and consultant clinical neuropsychologist at the University of Hull. Find this article on nrtimes.co.uk for links to their paper Shame, self-discrepancies, and adjustment after acquired brain injury.

This magazine is just the tip of the iceberg

Visit NRTimes.co.uk for daily industry news and updates

SO MUCH MORE TO EXPLORE WITH NEURO REHAB TIMES ...

With Neuro Rehab Times you get the best of all worlds Print, Editorial, Online and Social

Sign up for the weekly newsletter to ensure you keep your finger on the pulse of what is going on.

Stay ahead by following NRtimes on social media

@editorNRTimes

company/nrtimes

To ensure you keep getting Neuro Rehab Times, go to www.nrtimes.co.uk/update and follow the instructions.

EQ UIPMENT Sponsored feature

Achieving independent bed access with neurological conditions Getting in and out of bed is a common problem for individuals with a neurological condition. With risks from Covid-19 now an added challenge, the desire to achieve independent bed transfers without carers is even more important – made possible by the powered Rotoflex rotational bed range from Theraposture.

An award-winning solution Theraposture has been a respected supplier of specialist adjustable beds, chairs, and care cots since 1981. It provides the largest selection of tailor-made turning beds for a multitude of user conditions, sizes, and weights. By pushing and holding just one button, the Rotoflex bed provides a safe and independent way to get into and out of bed.

It also helps the user to stand up safely by vertically lifting them and most importantly, NOT tipping them forward – so important for users with inconsistencies around weight bearing and balance.

80

NRTIMES

The ground-breaking Rotoflex 235 won the prestigious Excellence in Caring Award at the OT show, and the new Rotoflex 235 Mk2 builds on this reputation by offering further functionality.

The latest turning bed innovation A key advancement in the Rotoflex 235 Mk2 is its inbuilt software which provide personalised programming of functionality. Neuro users can choose their maximum angle of rotation, incline limit or return to their favourite preprogrammed position. Soft-start movement is also now included and operation is quicker. All this operation, including using the unique and patented rising heel section, is controlled with just one hand control. The Rotoflex is the only rotating bed in the world to include a powered rising heel section.

The Rotoflex 235 Mk2 has a recommended maximum user weight of up to 200kg (31 stones). The design of the lifting frame means that it will not tip over and the mattress will not come off the bed. There are also low access and heavy-duty versions in the range.

Liam Braddell, Theraposture Sales Director, says: “When two carers are potentially replaced by a Rotoflex, the cost of the bed

could be repaid within 14 weeks. Annually, the typical cost of care to assist one person with bed transfers is over £27,000 per year and this is an ongoing cost. Also Theraposture partner with the Parkinson’s UK Charity. We provide those living with Parkinson’s a 10% discount off our normal prices. We have also extended this offer to people with MS.” End user story Rotoflex bed helps determined retired RAF Nurse with Parkinson’s to remain at home.

Now living with the effects of Parkinson’s Linda requires assistive equipment to remain mobile – her new Rotoflex is a vital solution for safe access in and out of bed.

Linda explains: “Before owning my Rotoflex, getting in and out of bed was becoming increasingly difficult. I was having to pull myself up on my arms and my elbows were developing sores. My Rotoflex has now made a fantastic difference to my life especially as I am adamant that I will not be going into a care home. My independence is so important to me especially as I didn’t have a permanent home for so long serving in the RAF.” www.theraposture.co.uk

E VE NT S

Dates for your diary

OCT 20

MAR 21

Please check with contacts beforehand that arrangements haven’t changed. Events organisers are also asked to notify us at the above address of any changes or cancellations.

The 11th World Congress for Neurorehabilitation will be going digital this year. It will cover all fields of neuro-rehab, as well as physical and rehab medicine. Sessions include genetic advances in neuromuscular diseases, the role of robots in neurorehab, music therapy, sleep disorders and sexual dysfunction. www.wcnr-congress.org

SEP 20

NOV 20

National paediatric acquired brain injury conference Next year's National paediatric acquired brain injury conference will bring together partners, supporters and families to discuss rehab pathways for young people with acquired brain injury. The conference will be held in the Edgbaston Conference Centre in Birmingham. The theme is finding rehab (pathways and strategies).

See www.childbraininjurytrust.org.uk for details.

To list your event in NR Times contact editor@aspectpublishing.co.uk.

10

Where innovation meets evidence: The cutting edge of Neurologic Music Therapy and evidence-based practice in clinical settings, hosted in Westminster.

The day will involve presentations on music therapy programmes, collaborative clinical work and recent research, with talks on music therapy in acute trauma care, and within acute stroke rehabilitation, and an overview of return on investment regarding the cost-benefits of music therapy See www.abisolutions.org.uk for more details.

7 - 11

9 - 10

The European Neuro Expo.

Europe's only trade event for brain injury and spine experts, this conference at the National Exhibition Centre in Birmingham will include 150 presentations and workshops hosted by the University of Plymouth’s specialist neurological rehabilitation team.

See www.neuroconvention.com for more details.

25

MAY 21 26 - 28

The Neuro rehab and neural repair conference in Maastricht is organised by the Dutch, Belgian and German Societies for neurorehabilitation and the Association of Chartered Physiotherapists in Neurology in the UK. The multidisciplinary conference will focus on the most recent advances in neurorehabilitation research, including the speakers in the field of neuroplasticity and neuro-rehab. www.neurorehabrepair.eu

NRTIMES 81

CLOC K IN G OFF

IT'S CALLED PAREIDOLIA...

If you keep seeing faces in your cappuccino foam or etched into your toast, don't worry. It's called pareidolia, and it's completely normal. It's defined as the tendency to see false perceptions of faces in inanimate objects.

A new study, published in the journal Psychological Science, has found that repeated exposure to pareidolia faces that seem to be looking in one particular direction cause bias in your perception of where human faces are looking. So if you repeatedly look at pictures of faces that are looking towards your left, your perception will change over time so that the faces appear to be looking more rightwards than they really are.

The researchers, from the School of Psychology at the University of New South Wales, concluded that this is because seeing human faces and pareidolia faces cause an overlap of sensory mechanisms activated in the brain.

82

NRTIMES

XXX

Goal Manager A comprehensive goal-setting and management platform for rehabilitation settings Integrates and automates Gold-standard practice in goal setting, including Goal Attainment, Scaling and SMART objectives.

Secure cloud-based service, allowing you to access data and collaborate with your MDT from wherever you are.

Automatic reporting and summary data allows you to easily track client progress in a meaningful way.

Suitable for everyone from individual clinicians to large multidisciplinary services.

GDPR and HIPAA compliant.

Evidence-based goal setting achieved in 43% less time

Sign up today for your free 30 day trial goalmanager.co.uk