NR Times issue 23

NR TIMES NEURO REHAB TIMES

Emilia Clarke’s SameYou Pioneering a new level of brain injury support

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THE NEW ME How therapy rediscovered C a t h y ’s l u s t f o r l i f e

A B I S T R AT E G Y - W H AT ’ S N E X T ?

The sector tells us what is badly needed

N E X T- G E N CONCUSSION DETECTION The new innovation changing the game

WELCOME

Editor's note We l c o m e t o o u r l a t e s t e d i t i o n o f N R Times - something of a new era for us as a n e w l y - d i g i t a l m a g a z i n e a n d w e’r e d e l i g h t e d to s h a re i t w i t h yo u , a f te r a l o t o f wo r k from our team and from so many of our s u p p o r t e r s i n p u t t i n g t h i s t o g e t h e r.

For our interactive digital edition visit

nrtimes.co.uk

These are challenging times indeed - the cost of living crisis deepens and affects all of us in some way, businesses and individuals alike; we have lost our beloved Her Majesty Queen Elizabeth II, sending our country into mourning; and we have been through political turmoil with the change of Prime Minister.

For those working in neuro-rehab, while times are tough, the absolute commitment to clients and patients will continue as it always has. The past two years in particular have been hugely difficult, and the challenges continue, but the dedication and positivity we see and write about from those working in neuro-rehab is inspiring and thoroughly uplifting.

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

As a publication, we try and share some of these stories of hope, of inspiration and of the amazing work being done to change the future for others.

Our cover story is one we are delighted to share with you. Actor Emilia Clarke has so bravely shared her experience of brain haemorrhage publicly, which has helped countless others to have the confidence to share their own feelings, and to find comfort in knowing they are not alone.

The work of her charity, SameYou, in making the positive change that will support other people and families to rebuild their lives after brain injury is fantastic - and in this issue we not only reflect on the pioneering work done to date, but also share news of the first-of-itskind SameYou Centre.

We also shine a light on the experiences of fellow survivors who have overcome adversity to inspire others - having come close to death after stroke, Lisa Beaumont is now achieving new goals through becoming an advisor to some of the leading tech innovators in neurorehab. We also have Cathy, who, with the support of specialist therapy, has gone from being confined to her home to travelling the world on her own.

We also have a wealth of content from across neuro-rehab showing the progress we continue to make together - and as the ABI Strategy draws ever closer, we also take the opportunity to look at what the sector hopes to see.

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

This is our first issue of NR Times where we are circulating digitally only. While this is a big change for us, we have worked so hard to create a compelling digital magazine which we hope you will see is still every bit the NR Times you have come to know over the past five years - but now in a more progressive and sustainable format. Special thanks to our designer Sophie who has worked tirelessly on this project.

We’d love to hear your feedback on our new digital format, as well as to hear your stories, so please continue to get in touch via email, Twitter, Facebook, LinkedIn or give us a call anytime. We look forward to hearing from you.

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

Deborah Johnson deborah@aspectpublishing.co.uk

company/nrtimes @editorNRTimes 3

CONTENTS

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EMILIA CLARKE inspiring fellow survivors and pushing for change through SameYou 1 2 PA R K I N S O N ’ S T E S T breakthrough inspired by woman’s sense of smell

Contents

1 4 A B I S T R AT E G Y what’s next for brain injury survivors?

The sector speaks 1 6 N E X T- G E N N E U R O - R E H A B how the RehabHub is changing the game 1 8 C U LT U R A L LY- S A F E SUPPORT the need for a bespoke approach for South Asian clients

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CHANGING THE GAME a pioneering new approach to concussion detection

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24 COMMITTED TO CARE Komplex Care discusses its ethos and approach

32 THE NEW ME how Cathy is living her rediscovered love of life to the max

2 6 T H E J U RY I S O U T how are we approaching rehabilitation of prisoners with brain injury?

3 6 B E T H E OT YO U TRAINED TO BE discovering the potential of working across the NHS and private sectors

30 LIFE-CHANGING REHAB TECH how Martyn is rebuilding his life with the support of remote rehab

40 RIDING THE STORM addressing the case management recruitment and retention challenges

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50 4 2 M S O U T P AT I E N T SUPPORT how Askham’s cutting-edge rehab facilities are benefitting the community 44 RELIEVED BUT BROKEN a mum shares her story of the long wait for her daughter’s diagnosis 46 TR ACHAEOSTOMY CARE why specialist support is vital in regaining an independent life 56 A BEACON OF NEUROSCIENCE hear from the medical director of The Walton Centre

48 THE NEED FOR BOUNDARIES the HR rules around working in someone’s home

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S I LV E R T R A U M A

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HD RESEARCH

NR Times previews one of the neuro rehab sector’s must-attend events

how the work of St Andrew’s is benefitting staff, patients and families

54 INDEPENDENT LIVING TRIALS their role in the rehabilitation process

6 2 TA L E N T S P O T T I N G specialist recruiter helping to fuel the growth of neuromodulation

6 4 A D O P T I V E FA M I L I E S the importance of including them in therapies 65 DEMENTIA AND MUSIC THERAPY giving the opportunity for expression and connection 66 SURVIVING AND THRIVING how Lisa Beaumont continues to break new ground after stroke

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C O V E R S T O RY

Breaking down boundaries after brain injury U s i n g t h e d e e p l y p e r s o n a l ex p e r i e n c e o f i t s f o u n d e r E m i l i a C l a r ke , p i o n e e r i n g c h a r i t y S a m eYo u i s c o m m i t t e d t o c h a l l e n g i n g t h e s t i g m a around brain injury and widening access to neuro-rehabilitation.

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C O V E R S T O RY

Here, CEO and cof o u n d e r - a n d E m i l i a ’s proud mum - Jenny C l a r ke d i s c u s s e s t h e situation for survivors, what action must be t a ke n , a n d h ow t h e f i r s t o f - i t s - k i n d S a m eYo u Centre is set to up the ante in support for people living with brain injury even further

As a young stroke survivor in the glare of the international media spotlight, actor Emilia Clarke’s recent BBC interview to bravely discuss her two near-fatal brain aneurysms thrust the issue of brain injury very much to the fore.

Disclosing that she has “quite a bit missing” from her brain following her aneurysms in 2011 and 2013, Emilia has made an astonishing recovery, without interrupting her career, and she is currently making her West End debut in The Seagull.

"The amount of my brain that is no longer useful, it is remarkable that I'm able to speak and live my life normally. I'm in the really small minority of people who can survive that,” Emilia told the BBC’s Sunday Morning.

And while people collectively marvel at her recovery, and the honesty with which she shared her story - no doubt inspiring countless fellow survivors around the world with the power of her words - the awareness around brain injury Emilia is helping to generate is still

not translating into urgent widespread action in delivering the support survivors so badly need.

Access to neuro-rehabilitation remains at a premium, with many people receiving the minimum of six weeks of community support after discharge from hospital - but with the impact of the COVID pandemic, even that scant access to support is routinely being delayed by weeks, and often months.

The charity SameYou - established by Emilia and her mother Jenny to help raise awareness of, and remove the taboo around, brain injury, and to find innovative ways of increasing support to survivors and families - is vocal around the need for significant change to happen.

Here, in an interview with NR Times, Jenny shares her views on what action should be taken and how SameYou is playing its role in changing the future for brain injury survivors

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‘ We n e e d a c o - o r d i n a t e d n a t i o n a l a p p r o a c h’ The regional disparity in access to neurorehabilitation is known to be a significant barrier in the recovery of many survivors, something amplified further by the pandemic.

And while the creation of the national ABI Strategy is brilliant and a step forward in action being taken to address - and hopefully rectify - this situation, Jenny believes that national collaboration could really make a sustainable difference.

“Survivors and their families need to see that they are being listened to. There is a clear gap between what’s currently available and what people tell us they urgenly need to accelerate their recovery,” says Jenny, CEO of SameYou. “I think it needs to be a co-ordinated national approach, and the obvious but hard to achieve focus is that we must collaborate.

None of us can make this huge change by ourselves.

“The system currently is so fragmented, and pathways inconsistent. There is a real and urgent need to focus on rehabilitation and recovery for people with brain injury.

“We have a stroke pathway, but after acute care and hospitalisation, people tell us

they feel abandoned . And without holistic rehabilitation strategies in place, this will not change. With traumatic brain injury, there isn’t even a pathway. And we very much need to have a clear pathway forward, to make sure all brain injury patients can have the essential same care they need.

Jenny also believes education is crucial in effectively tackling the issue, and making people realise their role in addressing brain injury and dispelling the stigma.

“If you look at the national FAST campaign around stroke, that has been such a success and people now understand what it looks like to have a stroke, and they can take action.

A national campaign around brain injury is something that should be considered,” says Jenny.

“How do we create a national campaign to raise awareness around people who've had a brain injury, people with a chronic, long-term problem?

“If you have heart failure, there are clinicians around the country who will have responsibility for taking care of you after that, and there are many organisations to

take care of you if you're going through cancer.

“But where is the care for people when they have had a brain trauma? Do people even fully understand what trauma means? Do they know the signs of that and what to look for, do they know what to do?

“And as well as knowing the signs, we need to look at helping people to understand what it's like living with the impact of brain injury. A lot of it all starts with education.

“You can't expect people to know what to do unless they are aware of the problem, and then understand the complexities of this particular problem. So in that sense, education around the issue is very important.

“People write to us, we have had thousands of messages from people who live with consequences of their brain injury, and they don’t feel like they are even counted. They are living with this unmet need for support and neuro-rehabilitation, and they’re not getting anywhere near enough.

“We need to develop conversations about it, so people become more aware and those who are living with brain injury can access the support to live their lives as fully as possible.”

P l a n s fo r a U K- f i r s t i n b ra i n i n j u r y s u p p o r t SameYou was established to raise awareness of the problems, using Emilia’s personal experience to represent the problems millions of survivors’ face.

The charity is keen to play its part in helping to end the inequality around brain injury support, and in the three years since its launch, has been committed to highlighting innovative new ways in which to deliver the much-needed access to rehabilitation - and its latest project is typically inspiring and groundbreaking for the pioneering young organisation.

Keen to make an impact at ground level, SameYou is partnering with UCL and UCLH - where Emilia was treated after her first aneurysm, and her family are still indebted to the team for their outstanding care and support - to create both an online platform and physical SameYou Centre, a drop-in centre to focus on emotional and practical recovery.

The centre would help survivors to tackle ongoing issues as a result of their brain injury, addressing the growing gap in provision around mental health support in particular.

“People talk about this (brain injury) being a

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niche - but when you think of how widespread the problem of mental health is after the COVID pandemic in particular, and add that to the fact that one in three people will have a brain injury in their lifetime, you realise this is not niche at all,” says Jenny.

“We know there are a great deal of people who probably don't even hit any NHS radar, because they think there's no help there, and the support there is for mental health and brain injury isn’t connected with the wider neuro-rehabilitation.

“It is so important to have ongoing support not six weeks, not ten weeks, this should not be time limited. People with brain injury should be allowed to feel they can get their lives back and be given the strategies so they can get involved in their own recovery.

“You have this life changing event, and as a young person, maybe you haven't got even your life together yet. And then brain injury happens and you're pushed off course. If you're 25, how do you do manage that?

“And then there are the mental health consequences of saying, ‘I've nearly died, my life is now really different. There are some

things I can't do, how can I live a fulfilling life?’ Emotional recovery and mental health recovery is the same thing.

“We have come across countless people who need that mental health support at various stages of their recovery, and it’s just not there. We should be giving them the skills to help themselves, and that is what we want to deliver from our centre.”

Fundraising is currently underway for a pilot programme with Jenny and her fundraising team securing seed funding from a number of sources to get the project off the ground.

“This is an innovation, it’s a work in progress, and we are working with Queen Square to really build out the protocols and the process of how we tackle this.,” she says.

“The team at UCL and UCLH are very committed to creating this service - and we (at SameYou) really, really are. We are having very detailed conversations about what we could be doing and what we shouldn’t be doing.

“This has been on the cards all through lockdown, but we have had to wait for the right time to explore this further. It is very exciting to explore plans more thoroughly.”

C O V E R S T O RY

Professor Aisha Holloway, Professor of Nursing Studies, Co-Director Edinburgh Global Nursing Initiative, University of Edinburgh Professor Dame Anne Marie Rafferty, Chair in Health & Nursing Policy, King’s College London

Making change happen Having only marked its third anniversary in March this year, SameYou has already made a sizeable impact - both in terms of getting brain injury on the agenda, and in leading the innovation to bring about change.

Only weeks into the onset of the pandemic in the UK, in early April 2020, SameYou partnered with UCL and UCLH to launch NROL - a pioneering telerehabilitation programme which would translate in-person multidisciplinary therapy into virtual, ensuring neurorehabilitation could continue for countless people, whose recovery may otherwise have been paused.

A study has since verified the efficacy of NROL during that initial crucial period, with statistics showing it had helped participants to “significantly improve” on defined outcome measures.

Its success has led to its expansion into a partnership with East Lancashire Hospitals NHS Trust (ELHT) and the University of Central Lancashire (UCLan), which will now be rolled out across Lancashire and South Cumbria after securing National Lottery funding.

Talks are now underway with other NHS Trusts to bring them on board to deliver NROL, which is now operating as a hybrid model, but with the crucial ongoing access to virtual neurorehabilitation being a permanent staple of the programme.

“In our first year, we really got ourselves revved up and clear about what we wanted to do - but then when COVID hit, it did impact us tremendously,” says Jenny, who hails the efforts of SameYou’s “wonderful volunteers” around the world as playing a key role in the charity’s ongoing development.

“We felt we were only just getting started and then we were thrust into such a different environment. While we had to reduce a lot of what we were doing to remain sustainable during that period, we moved our focus onto the telerehabilitation.

“In our ongoing discussions with UCL and UCLH, there was a big problem around how people could be safeguarded after leaving hospital, when COVID meant that all services were put on hold, and therapists couldn't go into people's homes.

“We looked at it from the angle of ‘You're in hospital, and you're having to leave hospital earlier than they would like. How could we do something that would give some support very early into the recovery of stroke or brain injury survivors?

“This moved very quickly, within weeks, and UCL were just so responsive.

It’s one example of what can be achieved through collaboration.”

Among its other successes to date has been the collaboration with the RCN Foundation around nurse-led holistic neuro-rehabilitation for young adults.

To date, the partnership has delivered a research study from the London School of Economics, demonstrating the economic case for investing in advanced nurse practitioners in neuro-rehabilitation; the Young Adults Rehabilitation Needs and Experiences following Stroke (YARNS) exploratory study by the University of Edinburgh of the lived experience of the neurological rehabilitation and care of young adult patients aged 18 to 40 years, following an ABI; and a UK-wide post-graduate certificate in neuro-rehabilitation and care with the aim of enhancing advanced nursing practice in this speciality.

“We are looking to add another level of support for young adults with brain injury, and to collect data. We don’t have enough data and that is absolutely crucial to change being enabled,” says Jenny.

“We are currently working with amazing nurses and the wonderful Professor Aisha Holloway at Edinburgh, and we’ve done the first round of the programme, but are now extending it because nurses are under so much pressure in their roles anyway, they found it difficult to do this post-grad work in just a year.

“Nurses have an absolutely crucial role to play in neuro-rehab, and the conversations around this started with clinicians because of Emilia as a young adult brain injury survivor, and now this programme will be able to help so many other people.”

With many more projects in the pipeline including developing partnerships in the United States, with Spalding Hospital in Boston, Mount Sinai in New York and UCSF - at the root of everything, believes Jenny, is collaboration.

“The scale of the problem is so big, that by convening people, thinking about it collectively and coming up with ideas, we can make a difference together,” she says.

“We have our role to play, but we are a very small charity who are keen to play our role in making change through innovation.

“In the States, we are seeing early-stage trials around brain repair, and that is something really important to think about for the future.

“We may be years away from that now, but we should be looking at the innovation and long-term developments in addition to what we can do right now, the things that don’t require massive change.

“Our focus is on both - playing our role in funding the future while making positive change today.”

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Pioneering report to give survivors a voice Acutely aware that countless survivors feel unheard and alone, SameYou has produced the Untold Story of Brain Injury, which heard the stories of resilience, loss, pain and recovery from over 1,400 people living with brain injury.

The report helped to highlight the life-changing impact felt by so many survivors and their families in the first-of-its-kind analysis of experiences, and looks at the many challenges they continue to face, in the hope of laying bare the reality of their situation and widening the understanding of society at large as to the impact of brain injury.

It helped to establish the hugely positive effect of Emilia sharing her story, with many survivors speaking of their gratitude that someone in the public eye would speak so openly and honestly about their experience.

“I get days when I just want to give up,” one survivor wrote to Emilia for the report.

“But after hearing your story, I realise I’m not on my own. I’m not the only one in the world who has had it. It turns out that my favourite actress has had the same as me!”

It also helped to articulate the traumatic ongoing impact of brain injury and how it manifests itself.

“Another sharp, sudden pain occurred, but this one was about 100 times worse than the first. If I had to imagine what being shot in the head felt like, it would be like this,” said one survivor.

“When I was allowed home, I was angry and confused about a whole new set of things - not being able to walk, not being able to work, not being able to read, or to be alone,” said another.

“Now it’s almost a year later and I’m still confused and angry about a lot of it - not being as fit or strong, not being allowed to drive, not being able to stay awake.”

The lack of awareness of brain injury was also highlighted in the report.

“The need for awareness about the effects of this terrible illness is great; I’ve found hardly anyone understands why I’m still not better,” said one survivor.

“Just because I look normal, people think I am normal, but I’m not. It’s frustrating that I’m not helped because I don’t look ill.”

For brain injury survivors - particularly those whose situation is similar to Emilia’s, with uncertainty as to whether stroke may strike again - the mental impact is huge.

“Every day I am now on edge, worried if something might happen, because it could happen at any moment,” one survivor said.

Another said: “Some days are still dark and hard and anxiety is a major part of my life today that I have to be constantly vigilant about.”

For everyone, the importance of neurorehabilitation was clear - but access to resources was found to be difficult.

“Receiving optimal neuro-rehab services and navigating the system has been a nightmare to say the least,” said one.

“The need for more services and awareness on brain injury is vital, and for anyone who is suffering with the effects of a brain injury - or their families or friends, as it really has a knockon effect - more support and awareness needs to be put forward,” said another.

But despite the ongoing impacts and huge difficulties in accessing resources, one distinct theme that came through was hope.

“This has been a difficult journey, but has taught us all the value of life and relationships,” said one survivor.

Another said: “Recovering from it gave me a new vision for my life; something I’m very grateful for.”

Fundraising mission To help sustain its pioneering work and take forward plans for its SameYou Platform and Centre, the charity’s latest fundraising drive focuses around cycling.

Participants in Cycle Ibiza will cycle either 200km or 140km over two days between April 21 and 24 next year.

With a fundraising target of £1,500 per person, the event is open to cyclists of all abilities and will generate vital funds to underpin SameYou’s work, as it continues to grow and extend its support to more survivors and their families.

Bikes can be hired or participants can bring their own.

For anyone wishing to register interest in taking part, or for any businesses who would like to support the event through sponsorship, contact: clareroberts@sameyou.org

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Rebuilding lives Everyone Matters Everyone Works Together Everyone Makes a Difference

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creating futures QEF’s Care and Rehabilitation Centre provides expert neuro rehabilitation and 24/7 nursing care; supporting people to rebuild core skills after an acquired brain injury, stroke, incomplete spinal injury or neurological illness.

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Contact us to find out more Tel: 01372 84 1111 Email: neurorehab@qef.org.uk Web: www.qef.org.uk/CRC_professionals

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N R news

Test can detect Parkinson’s through skin swabs A new method to detect Parkinson’s disease uses skin swabs to analyse sebum has been developed, in a test which can take as little as three minutes.

A new study uses mass spectrometry to analyse sebum, and found that lipids of high molecular weight that are substantially more active in people living with Parkinson’s.

The breakthrough stems from the observation of Joy Milne, who discovered that she can distinguish Parkinson’s in individuals from a distinct body odour before clinical symptoms occur.

Joy first detected the odour on her husband Les, who was diagnosed with Parkinson’s at the age of 45. She only linked the odour to the disease after Les was diagnosed and they met people at a Parkinson’s UK support group who had the same distinctive smell.

Joy has hereditary hyperosmia – a heightened sensitivity to smells – which has been

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exploited to find that Parkinson’s has a distinct odour which is strongest where sebum collects on patient’s backs and is less often washed away.

Building on this, researchers from The University of Manchester used cotton swabs to sample people and identify the compounds present with mass spectrometry. The method developed involves paper spray ionisation mass spectrometry combined with ion mobility separation and can be performed in as little as three minutes from swab to results.

Professor Perdita Barran, who led the research, said: “We are tremendously excited by these results which take us closer to making a diagnostic test for Parkinson’s disease that could be used in clinic.”

Altered sebum production is a well-recognised feature of Parkinson’s. The new sampling procedure is simple and non-invasive; sebum is collected in clinics from the upper back of patients and posted to the lab.

Describing the new technique, Dr Depanjan Sarkar said: “The sebum is transferred to filter paper from sampling swab, and we then cut this to a triangle, add a drop of solvent, apply a voltage and this transfers

compounds from the sebum into the mass spectrometer.

“When we do this, we find more than 4,000 unique compounds of which 500 are different between people with PD compared to the control participants.”

The Manchester team now see this as a major step forward towards a clinical method for confirmatory diagnosis of Parkinson’s, for which to date there is no diagnostic test based on biomarkers.

Professor Monty Silverdale, clinical lead on this study, said: “This test has the potential to massively improve the diagnosis and management of people with Parkinson’s disease.”

The current and future focus is to translate these findings into a test of clinical utility.

This new work also opens the door to possibly diagnosing other diseases through non-invasive sebum analysis and the team, along with the University of Manchester, have launched a spin out company Sebomix Ltd. to develop this further.

The charities Parkinson’s UK and the Michael J. Fox Foundation as well as the Royal Society funded the research.

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N R news

Countdown to the ABI Strategy - what’s next for the UK’s brain injury approach?

As the Acquired Brain Injury (ABI) Strategy is formalising, neuro-rehab organisations share the changes they’d like to see from what is hoped to be a landmark government intervention.

Last December the UK government announced plans to step up its support for people living with brain injury and level disparities in care provision through its first ABI Strategy.

The news followed an extensive campaign led by Chris Bryant MP, and a subsequent consultation process saw brain injury organisations, professionals and leaders from across the country input their ideas and concerns.

ABI is an umbrella term for traumatic a n d n o n - t r a u m a t i c b r a i n i n j u r y, s o i t already includes traumatic brain injury and capsulitis hydrocephalus, brain tumour meningitis, brain infections, surger y and many more.

With this period now closed, the brain injury community awaits the publishing of the strategy by the Department of Health and Social Care – while it is set to be released in ‘early 2023’, no official date has been set.

In the meantime, neuro-rehab professionals have shared their views on what they hope will be included.

The strategy is much needed, with brain injury a leading cause of death and disability in the UK and an estimated 1.3 million living with an ABI. Its economic impact, meanwhile, is around £15bn per year.

While long overdue, some caution that the strategy could be “too broad”, given the range of conditions ABI covers.

“It does have the potential to make significant difference for children, young people and adults, but I have some concerns around it,”

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says Gerard Anderson, head of brain injury at the Child Brain Injury Trust (CBIT).

“ABI is an umbrella term for traumatic and non-traumatic brain injury, so it already includes traumatic brain injury and capsulitis hydrocephalus, brain tumour meningitis, brain infections, surgery and many more.

“To then include degenerative, progressive, and long-term conditions will expand the remit to more conditions and groups than is manageable. This means that if [the strategy] is too broad, then it limits the impact that it can have.”

Vicki Gilman, clinical specialist neurophysiotherapist and managing director at Social Return Case Management, says that the uniqueness of the brain injuries means that a strategy that would fix every single person is elusive.

“There will inevitably be limitations, but we have to start somewhere,” she says.

“We haven’t had this level of acknowledgment around brain injury before and a strategy like this has definitely been something needed for a very long time.”

Natalie Mackenzie, director and cognitive rehabilitation therapist at the Brain Injury Support Services (BIS), believes the strategy is a great starting point.

“There is always going to be more that can be done, but the strategy is a good place to start,” she says.

“It’s really important that people are getting the right rehab at the right time and I think the strategy should ensure that the right level of specialist support is provided at the right time to minimise delays.

“We can see big differences between the individuals who have received the right rehab support from the outset, versus those who haven’t, so offering that much-needed support earlier on should be a priority.”

Access to rehab services can have wider implications.

John Davis, a consulting principal lawyer specialising in serious injuries at Slater and Gordon law firm, underlines the fact that many brain injuries cause personality changes, behavioural changes, as well as mental

N R news

health changes that affect everybody in the patient’s entire family.

“The ripple effects of a brain injury are enormous and relationship breakdown is common – not just in romantic relationships but also between parents and children,” he explains.

“If people have access to early rehabilitation the likelihood of adverse impacts upon relationships will be lessened and the effects of their behavioural problems will be mitigated.”

Research into the effects of brain injury on other family members has shown that relationships are put under enormous strain and relatives are likely to experience high levels of anxiety and depression.

As head of brain injury at CBIT, Anderson believes access to mental health support is an important issue the government strategy should cover.

“We see that often children, young people and their families don’t get the right support, both physically and psychologically to understand their ABI,” he says.

“Across the UK, many families are refused access to child and adolescent mental health services, as the poor psychological health of a child is directly caused by the injury to the brain and not as a result of prolonged or poor mental health.

“If children are not given the right rehabilitation they will experience longterm impacts as adults. For effective

Better awareness would lead not only to an increase in recognition of problems being associated with brain i n j u r y, b u t a l s o t o p o t e n t i a l l y b e t t e r workforce numbers.

rehabilitation after ABI, families need to be educated and supported through community rehab teams in a smart and accessible way.”

Rehab’s “postcode lottery” has been repeatedly highlighted in surveys where six out of ten people with neurological conditions had problems accessing the services and treatment they needed.

Lesley Pope, chair of the Independent Neurorehabilitation Providers Alliance (INPA), says that services need to be equitable across the country.

“Currently access to good neurorehabilitation is very much dependent on where you live and whether your commissioning body is educated about the benefits of it.

“There is often a huge battle to secure a placement and funding for much-needed neurorehabilitation and this can take many months during which time the person with ABI is left without the attention they need,” Pope continues.

“Commissioning bodies clearly need more in-depth knowledge and understanding of ABI.” The UK Acquired Brain Injury Forum (UKABIF), one of the main brain injury organisations that supported Chris Bryant’s campaign, also hopes that the strategy will address equitable access to specialist neuro-rehab services for all those living with an acquired brain injury, whatever stage of their journey.

“We would like to see a programme of training and awareness amongst educators to break the cycle of young people without support and to reduce potential access to the justice system,” says Chloe Hayward, executive director of UKABIF. “Additionally, we’d like to see a widely publicised concussion strategy and a focus on the availability of neurorehabilitation for children and young people.”

Pope says that raising awareness of acquired brain injury is key to improve patients’ lives as well as the neuro-rehab workforce capacity.

“Neurorehabiltation starts with highly skilled, specialist staff. Without them, quality of treatment will be severely impacted.

“Better awareness would lead not only to an increase in recognition of problems being associated with brain injury, but also to potentially better workforce numbers.”

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TECH

R e h a b H u b™ next-gen neuro-rehab

With its creation of a suite of sector-leading robotic rehabilitation technology, Fourier Intelligence is helping to push the boundaries of what is possible for a patient's recovery.

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TECH

With its creation of a suite of sector-leading robotic rehabilitation technology, Fourier Intelligence is helping to push the boundaries of what is possible for a patient's recovery.

And by bringing these cutting-edge robotic devices for both upper and lower limb therapy together through the development of the RehabHub™, neuro-rehab is being stepped up further still.

By collecting a patient's data in real-time, clinicians are given new levels of insight into their recovery and progress, enabling them to tailor more bespoke programmes than ever before.

And in a unique innovation, RehabHub™ offers the potential for patients to play against each other while on different devices, using the gamification options offered by Fourier Intelligence's robotics to deliver a new kind of interconnectivity to traditional rehabilitation making rehab fun while also maximising patient input and outcomes.

"This is a new approach to rehabilitation, and one which we are so pleased is being welcomed with such excitement and enthusiasm."

Launched in 2020, the RehabHub™ concept - which began in Fourier Intelligence's native Singapore - is now in countries worldwide.

Globally, there are more than 200 RehabHubs in operation, including the Shirley Ryan AbilityLab in Chicago, STEPS Rehabilitation in the UK and the Yongchi Rehabilitation Hospital in China, one of the most advanced rehab sites in the country.

"The RehabHub™ is helping to deliver better patient insight than ever before, supporting clinicians to give the highest quality of rehabilitation and enabling patients to secure the best possible outcomes," says Zen Koh, Co-Founder and Chief Executive Officer of Fourier Intelligence Global.

"The group therapy concept, which allows patients to play against each other, adds something new into neuro-rehabilitation, making rehab enjoyable and engaging while increasing motivation and inspiring

best performance.

"We are adding new RehabHub™ sites continually around the world, enabling more patients than ever before to experience our suite of robotic devices through our costeffective approach and partnerships with key sites globally."

"This is a new approach to rehabilitation, and one which we are so pleased is being welcomed with such excitement and enthusiasm."

RehabHub™ brings together the suite of devices from the Motus series, which collectively give a comprehensive rehabilitation solution covering the upper limb and lower limb, wrist joint and ankle joint, as well as balance and coordination.

This approach covers the diverse training needs of all patients and accommodates their condition and unique needs at whatever stage of their recovery.

Fourier Intelligence's robots have advanced force feedback technology, which can effectively simulate a therapist's hand and offer on-demand assistance to the patient during training - optimising their participation in exercise.

Its creation of a digital platform for patients and therapists to chart their progress also enables the interconnectivity of equipment, users, and institutions. This gives the ability for challenges and friendly competition within a patient group, inspiring the best possible engagement and maximum repetitions with a rehabilitation session.

"Our mission at Fourier Intelligence from the outset has been to make a difference to patients' lives and to maximise their potential in their recovery," says Zen. "We also want to push the boundaries of what is possible in conventional rehabilitation and use our technology to make positive change."

"Through our RehabHub™, that is made more accessible than ever before. We have worked with world-leading researchers, therapists, and patients to develop these solutions and to help inspire a new way of thinking in rehabilitation."

ArmMotus™ EMU The ArmMotus™ EMU is the world's first 3D back-drivable upper limb rehabilitation robot, setting a new benchmark for intelligent rehabilitation devices.

The robot, launched last year, has been hailed as having the potential to redefine humanmachine interaction and help set a new course in rehabilitation.

The device adopts an innovative cable-driven mechanism, combined with a parallel structure made of lightweight carbon fibre rods, which reduces the friction and inertia of the device.

This enables the control system to respond and execute more efficiently, resulting in higher compliance in work between the patient and machine.

Its use of force feedback technology enables the device to simulate the therapist's hand, supporting the user to adjust the assistance or resistance according to different rehabilitation needs.

The ArmMotus™ EMU also allows training in sitting and standing positions and accommodating different training arms. By integrating different scenarios in a game, users can train on strength, motor control, and joint ROM in one session, making the process more efficient.

ExoMotus™ M4 The ExoMotus™ M4 uses robotic and sensorbased technology to give a comfortable and safe environment for gait training.

The device had an integrated balancing support frame to enable patients with lower limb impairments to stand and walk to increase their activity level and help to regulate gait patterns.

Gait parameters are individualised, depending on the patient’s need, meaning it can be used at any stage of recovery and adapted accordingly.

Users can perform sit-to-stand training early in rehabilitation to promote sensory input, improve cardiopulmonary function, and prevent muscle atrophy.

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INSIGHT

Delivering culturally safe support to South Asian clients After marking South Asian Heritage Month, Shabnam Berry-Khan, director and clinical psychologist at Psychworks Associates, shares why the traumatic experiences of people coming to the UK in previous generations continue to impact today - and why, for that reason, a wholly bespoke approach to trauma within this community is needed from medico-legal professionals

Recently, we have marked South Asian Heritage Month (SAHM), from July 18 to August 17. It is significant as an opportunity to celebrate the South Asian contributions to the UK - currently there are around two million South Asian

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people living here - and to recognise stories from these times, both positive and difficult.

This year, additionally, SAHM commemorates two key milestones - the 75th anniversary of the partition of India into India, Pakistan and Bangladesh, and the 50th anniversary of the Ugandan expulsion of South Asians by Idi Amin.

SAHM has been marked by us at Psychworks Associates and is a topic that is dear to my heart - not just because I’m a brown person whose parents were both refugees in the respective India and East Africa crises.

But also because, as a psychologist, these experiences will be alive and active in brown clients that we all see. Regardless of whether it is their direct experience, and regardless of their awareness of it.

South Asian people make up the biggest minority group in the UK - but what is commonly known about their experience?

And how does and should that experience impact the work we do with them?

For many of our South Asian population in coming to the UK, there is often trauma associated with that - this can stem from within their family and heritage and can impact for generations to come. You can learn more about the reasons for this in our Q&A below.

An interesting paper that came out this year by Prajapati and Leibling (https://link. springer.com/article/10.1007/s40615-02100993-x) highlighted how South Asians feel about engaging with professional mental health services.

Notably, these stood out for me: > How seeking help triggers powerlessness and threat, and how behaviour changes when anxieties are heightened. > The importance of collaborative care: Service users described experiences of feeling disempowered and dehumanised when accessing services. > The importance of the input including family and friends: service users often valued the presence of family members for reassurance and support and felt services did not always value family input, seeing it as a hinderance. > Language is important to feeling like a service hears them in a way they want to be heard, because sentiments can be lost in translation. > The importance of trust in the professional relationship which can be enhanced when professionals look like them or can demonstrate at all times a sensitivity to the impact of cultural experiences on daily living.

If you look beyond the mental health context, many of the themes will apply to our work as personal injury professionals. As a traumainformed psychological service, trauma and its impact is central to how we at Psychworks Associates approach our cases.

INSIGHT

We know that traumatic experiences: > present in so many different ways: anger, low mood, compliance and conformity, outbursts, disengagement, calling out bias, feeling unsafe with unfamiliar others. > exist in the mind and body, so while we might understand the psychological effects, we also need to remember that the body also feels the effects (presenting as increased pain, worsened chronic conditions, somatisation etc). > are intergenerational and are transmitted down the lineage, so a grandparents’ direct experience in 1947 will be experienced in some way in 2022 by the grandchild (who may be our client or grandchild) > trigger other possibly unrelated traumas such as being bullied, ACEs, DV etc. and so what we see is an accumulation of traumatic experiences.

This is very applicable to the experiences of many South Asian people, and is something we should bear in mind not just during SAHM, but beyond that, and into the experiences of other people from other diverse backgrounds.

At Psychworks Associates, we are passionate advocates of the need to implement equality, diversity, inclusion and belonging within our daily lives. We believe developing an inclusive and equitable service must be at the heart of any organisation.

Collectively, working within the medicolegal sector, we have a long way to go in effectively challenging long-held practices and approaches - but we are proud to help lead the efforts in providing diverse, inclusive, equal care to increase a sense of belonging and cultural safety.

As a takeaway from SAHM particularly, we see that without engaging with these changes, South Asian people will be labelled unfairly as hard to engage and easy to ignore.

Here are some questions and facts about the South Asian communities that you may know personally or professionally, and a little about the stories they have lived and heard.

“From empires such as the Mughal, the Duranni, the Vijayanagar and the British, from indentured labourers forced to travel to the Caribbean and East Asia, and other migrants who travelled by choice to Africa and beyond, to the journeys that families made to the UK with just £3 in their pockets, we have all been affected by the journeys of empire.” SAHM website

Did you know that up to 20 million people migrated to/ from India in 1947?

A huge number, making it the largest forced migration and refugee crisis in living history. Once the British left the colonies, communities were realigned according to religious beliefs and up to 2 million people were thought to have lost their lives while being displaced.

My dad was a refugee moving from India to Pakistan as an eight-year-old. He found the most upsetting part was having multi-religious communities and neighbours suddenly turn into enemies overnight. It was frightening: many people feared for their lives and others did not make it. Rebuilding their life was not easy either, but what choice did he and others have?

27,000 of these displaced Indians went to East Africa to start afresh. However, when ‘Africanisation‘ policies started in 60s, following independence from Britain, the same brown people who had came to seek refuge 20 years earlier, became again a persecuted group.

Many came to the UK. My mum was a survivor of the East African expulsions. She was one of the lucky ones whose family voluntarily left only a couple of years before many were forced out.

The sadness of leaving her home with whatever they could carry in such an uncertain times was masked by the relief of arriving her family in tack.

For those who stayed behind in a newly carved up Indian subcontinent, they had to start from scratch - despite being from the same original land. It became a hidden refugee experience which isn’t always recognised because migration outside of original India was not made.

W h a t wa s i t l i ke a r r i v i n g i n the UK back then in the 60s?

For the vast majority - possibly including for our clients or their parents/grandparents - the hardship and struggle continued.

The Brits were unwelcoming and unhelpful towards those arriving as refugees who had left their lives behind. Housing was difficult to get, employers were reluctant to offer roles to brown people who were suitably qualified and spoke English. And racism and prejudice was explicit resulting in the next generations - including me - being told directly or indirectly “to keep my head down…not to do anything to draw negative attention…don’t think people here like you”.

What does this mean for brown people in the UK today and for those of us with brown clients?

The plight of brown people in recent history as a ruled people for 200 years, who then turned into refugees, and who then faced and can still face significant explicit and implicit racism while trying to survive is important to acknowledge and recognise.

The immediate reaction might be the overwhelming sense of loss and grief, the stress and fear of starting over, the disbelief that this has happened to you and helplessness that might ensue, let alone an overwhelming sense of injustice and anger that people can be allowed to treat others so disrespectfully. The impact on brown peoples mental health is immense.

Trauma and anxiety affects relationships, parenting, the ability to engage - pretty much someone’s entire life. This can also be heightened by the disengagement many feel through the apparent ‘need’ to confirm to Eurocentric practices.

And we also know how trauma can present and affect social interaction: wanting to stick to our own, limited trust, protective parenting, fighting for fairness/justice, sensitivity to injustice or disregard of cultural comforts.

But, we now also know that traumas of the past - whether directly experienced or carried through the generations - are carried in the body as well as the mind. There is no surprise, therefore, that brown people have health issues that are linked to trauma: high blood pressure, heart disease, diabetes, amongst the classic chronic conditions.

Understanding the historic journeys of brown people in the context of a biased society is fundamental to offering a culturally sensitive service that is marked with safety, inclusivity and allowing brown people to live their authentic life without bias - because we need to work hard for them, not the other way round.

If this topic interests you, have a listen to our Psychology of Case Management podcast episode on racism on the 3rd page of our podcast listings: www.psychworks.org.uk/podcast/?270-page=3

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TECH

Changing the game in concussion T h r o u g h i t s c o m b i n a t i o n o f c u t t i n g - e d g e s c i e n c e a n d u s e o f e x i s t i n g t e c h n o l o g y, M Yn d s p a n i s h e l p i n g t o r e v o l u t i o n i s e t h e d e t e c t i o n o f c o n c u s s i o n . N R T i m e s s p e a k s to chief scientific officer Dr Benjamin Dunkley about its progress and potential While awareness of the risks of head impact and concussion in sport continues to grow, backed by evidence of its neurological consequences, the ability to detect seemingly ‘invisible’ injuries has remained challenging.

Frequently, those who sustain a mild head injury can present as having recovered through a series of cursory assessments - although the true impact can remain hidden, particularly against a background of previous head traumas.

But in a huge boost for the diagnosis and detection of concussion, MYndspan has created the means to discover these unseen impacts using non-invasive Magnetoencephalography (MEG) brain scanning technology.

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The use of MEG, which is already in use globally, has traditionally been used in diagnosing and monitoring epilepsy - but through its application in concussion, MYndspan has enabled a significant breakthrough in protecting athletes, in a move hailed as having “immeasurable value” by sports head injury charity Head For Change.

MYndspan - which is now commercially available in its first UK site, at Aston University, following successful pilots at the SickKids Hospital, Toronto, and The University of Helsinki - combines MEG scans with gamified tests of cognitive function, which measure a range of mental processes such as attention, memory

TECH

and visuospatial processing, giving new levels of insight into brain health, which can then be benchmarked and reassessed over time.

And with research detailing the impact of head injury in sport leading to growing calls for change, MYndspan could have a key role to play in this, believes Dr Benjamin Dunkley, chief scientific officer at the business.

“North America had its watershed moment some time ago in realising concussion was really a silent epidemic, an invisible injury that was having a lot of impact on player welfare,” he tells NR Times.

“It was affecting people in the armed forces and their welfare as well, as well as young children, older adults.

“I think the UK is now having its moment that maybe we had in North America a number of years ago. It's really coming into the public awareness now in the UK. “At MYndspan, we’re trying to leverage cuttingedge science alongside existing technology, to help to make positive change. At the moment, a lot of the decisions made are taken purely based on on people's reported symptoms. But with MYndspan, we can give people objective information about their brain.”

Dr Dunkley, an associate professor at the University of Toronto, first saw the power of MEG while studying in Cardiff, and realising its potential in wider neuroscience. He then moved to Canada, where he saw the role it could have in a wider forum.

“Straight away, I was immersed in this world of concussion, which was a big problem here,” says Dr Dunkley.

“Hockey, American football, these are very physical contact sports, and I was immersed in this issue and how some passive head impacts

eventually led to all kinds of issues.

“There was also the death of a young girl called Rowan Stringer, following a second concussion within a week, she unfortunately died due to Second Impact Syndrome. There was outcry about the failings of amateur sports, head injury protocols, head injury assessments. It really hit a nerve here and very much resonated with the public consciousness that this is a big issue.

“People realised this is not just affecting adult professional sports players or guys in the military, it’s affecting your children too.

“When I was doing my post-doc with sick children, and we had an imaging scanner that was used with epilepsy and in pre-surgical mapping, we said ‘OK, why don’t we apply this in concussion?’

“It seemed like it could be a great tool for trying to understand these invisible injuries. We've tried MRI, we tried CT, and nothing was really working. These traditional ways of evaluation weren’t really fit for purpose in that regard.

“We don't really have a reliable biomarker currently, there's no way to evaluate these brain injuries, there's no really reliable way to

prognosticate. After a concussion or an mTBI, 70 to 80 per cent of people do genuinely recover quite quickly and spontaneously, but the only relatively reliable prognostic marker is if you've had a previous concussion.

“So for every subsequent concussion, it increases chances that we have persistent postconcussive symptoms. Otherwise, there is no way of predicting this.”

Having also worked with the Canadian Armed Forces, Dr Dunkley saw its application in that field, too.

“I started working with the Canadian Armed Forces at a time when the war in Afghanistan was still ongoing,” he says.

“Brain injury and TBI was a real big problem in the forces as well as PTSD, and there are a lot of overlapping symptoms there.

“But these are psychological stress injuries, as well as brain injuries, and it's really difficult to tease them apart.

“None of the imaging that we have was fit for purpose in this regard. So there was a pressing need for a new way.”

Working alongside MYndspan founders Caitlin Baltzer, ex-VP of operations at functional brain imaging company Croton Healthcare, and Janne Huhtala - previously CEO of brain imaging leader MEGIN - Dr Dunkley’s research around the potential for MEG created a truly groundbreaking proposition.

“To some degree, I guess it has been serendipitous that this technology existed and we've applied it in this context,” he says.

“MYndspan saw a need for this. Through leveraging the technologies available, this is a great way to help people understand their brain functioning.

“Through these brain injuries, whether an mTBI or continual impacts, the structural changes in the brain, which we can't see, cause a huge neurochemical cascade.

"I think the UK is now having its moment that maybe we had in North America a number of years ago. It (concussion) is really coming into the public awareness now in the UK"

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TECH

“There are a lot of inflammatory changes in the brain. There are all kinds of metabolic changes, all kinds of neural damage to these highways of the brain, and connections that link up the neurons that really serve all of our thoughts and feelings.

“It’s a case of converging evidence from from multiple lines, from neuropsychology, cognitive testing, symptomatology, clinical history. And this will be another piece of that puzzle. I certainly think the technology isn't far from giving people an accurate diagnosis - and it is already incredibly useful from baseline assessments.

“We can show that your brain hasn't quite healed yet, and that there’s a risk of exacerbating that injury and making it worse.

We can see if there is residual dysfunction there and to monitor it over time.

“This evaluation of brain injury over time will really start to give us more information about when it’s safe to return to play, when military personnel can be deployed and return to work, when people can return to doing what they love. I think we have a huge part to play in that.”

Through continual advances in technology, MEG is being made even more accessible

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through its ‘miniaturisation’.

While traditionally available through large static scanners, its application can now also be through what can be equated to a portable cycle helmet, which also widens its potential into supporting children - a vital area to address, says Dr Dunkley.

“We think that kids are relatively robust and when they have a concussion, they will recover very quickly. But there's increasing evidence that’s maybe not the case,” he says.

“But we haven’t been able to scan them with traditional MEG, because it's just an adult system at the moment.

“The traditional systems currently have an adult-sized helmet, so it makes it difficult to to scan children probably below the age of about 10. We can go down to about six but often their heads are so much smarter than adults, the scanner moves around a lot and makes it difficult to pick up a good signal.

“Going forward, MYndspan will certainly look to build this into their system. There are some really exciting things on the horizon, and gaining this insight into children is a huge question, and one we want to address.”

And also, looking ahead, Dr Dunkley sees the potential of the portable MEG scanners being readily available for athletes as and when they need them.

“I think it's very close to being taken to a stadium. You could have an immediate pitch side evaluation, a head injury assessment, using this technology,” he says.

“It's not really a million miles away to envisage that potentially one of these systems would be stored in in the stadium, and eventually, in the back of the van and take them around to smaller stadiums pitchside. I don't think we're very far away from that.

“Sometimes scientists talk about experimental technologies that are a lot of years away. A few years ago, I would have said this was still a way away. But I have been really impressed with how quickly the tech has been moving. There is huge potential.”

After the successful pilots, its first UK site at Aston University launched earlier this year, and MYndspan is now looking to establish dedicated facilities in London and Toronto in the near future.

“The response at Aston has been fantastic.

After a successful trial in in my laboratory, we are seeing great success in Aston,” says Dr Dunkley.

“That's currently the UK hub, but we do share facilities with the University, so we're hoping to quickly expand into London and Toronto with our own sites.

“Currently, we are leveraging the existing store base of MEG scanners but we're very positive about having flagship sites in London and Toronto very soon that we can completely dedicate to this kind of service.

“We’ve got an amazing team with amazing expertise and we are very excited to see what the future will hold.”

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SPECIALIST CARE

‘We’re committed to delivering the very best standards of care it’s as simple as that’

NR Times meets Komplex Care, one of the most recent entrants to the care sector, to learn more about its ethos and plans 24

As one of the most recent entrants to the specialist care sector, Komplex Care is already making its mark.

Founded in 2019, it works nationally to deliver nurse-led care to people with highly complex needs in their own homes, working alongside their rehab provision to provide comprehensive all-round support.

An ambitious and forward-thinking national operator, Komplex Care was founded by a group of care specialists with vast experience of working in the sector and are committed to using their insight and expertise to lead positive change.

Having accelerated each year since its inception, Komplex Care recently expanded into new headquarters in Telford to accommodate its fast-growing team, and to give it more space to deliver it’s nurseled specialised training programs - another increasingly in-demand area of the business.

It is also a fully digital care provider, with adoption of paperless records and communication throughout the business something that has often been approached with caution more widely in the sector but is seen as vital to Komplex Care.

SPECIALIST CARE

“We're a well-formed but expanding team and we all work together, we all have exactly the same ambition - and that's to make sure that we're delivering the best possible highest standard of care,” says Arron Zaib, managing director of Komplex Care who joined in 2021 after two decades working in the field of complex care.

“We like to use a practical and relatable measure when looking at our delivery of care, as team we’re always assessing ourselves and think ‘Would that be good enough for my loved ones?’. If we can answer yes, then we know we’re probably on the right track of where we want things to be.

“Ultimately, we all want our loved ones to have the best possible standards of care, and that’s what we are committed to delivering.

It’s as simple as that.”

Komplex Care prides itself on the clinicalled support it gives to those with complex needs at home, and is appointed by growing numbers of Clinical Commissioning Groups, Integrated Care Boards and case managers nationally.

“Our goal has always been to be the provider that is first choice, based on our reputation and the service we deliver,” says Arron, who also oversees sister companies Komplex Health and Komplex Community, which cover the Shropshire area.

“For me, at this point when we’re just about to accomplish three years as a business in sector, it’s about broadcasting our name out there in the marketplace – and can only achieved through delivering the very best standards of care, which is where our focus will always be and should always be without exception.

“We are already competitive in the sector even after such a short space of time and this is due to the fact that we offer an effective, efficient yet bespoke service that once again puts our clients care first.”

“We are committed to doing our utmost, but we won’t ever hide. It doesn’t go perfectly well all the time, and any provider who say it does is not being truthful or transparent. Our process is to recognise an issue, analyse its facades, create a solution, and be actively visible on how we’re going to do it better.”

Komplex Care’s adoption of a digital methodology also makes it stand out within the sector, with Arron himself being an

advocate in the importance of such systems.

Indeed, families and Commissioners can also gain more insight into the care of their loved one or client through Komplex Care’s digital adoption, with both groups being given access to electronic care records, with the client’s permission.

“Our advocacy of the integration of software into the care sector is constantly evolving and we’ll always looking at ways in which it can play a greater role not just for ourselves but for the industry as a whole.” says Arron.

“For us, we’re trying to get everything digitalised and as streamlined as possible. It means the margins for complete compliance are that much more water-tight and in turn the safety of our clients exponential increases with each passing day. Rather than being under-utilised as a tool just for preparation for inspections, it allows us to show everything in real time and gives a far more accurate picture of where you sit as a provider.

“It provides access to family members better connected care, and Commissioners too. Lots of people are concerned about their loved ones who are receiving care, but we can show them in real time what’s happening with that individual. No matter the distance, we give you reassurance that they are being looked after.

“With Commissioners they can see what is happening as efficiently as possible, meaning that the constant stream of data on each package that is fed to them helps to ultimately justify the care that they’re paying for.

“I think with the pandemic, more people working in care have started to realise the benefits.

Healthcare was not geared up to work when offices were closed. Suddenly, people were having to think about how they’re going to get care plans re-issued when an office is closed, how do you get things printed off when you don’t have access to the printer? Basic things like that can make a massive difference to how a care operation can function.”

With Komplex Care continuing to grow, equipping its team to deliver the best possible service is central to its approach, says Arron.

“Many of the referrals we had initially as we came out of the pandemic were for people who had not received the care they deserved to a standard that they were entitled too because of lockdowns, and as a healthcare professional of 20 years that’s really heartbreaking to see,” he says.

“But we’ve got an incredible multidisciplinary team here who are committed to that, as they were during the pandemic - we hadn’t tried to overreach ourselves and kept our client group, but now we are able grow and take on cases who need more support and specialist care.

“We are creating our own Komplex family here, where the field-based staff around the country are very much part of it. We include them in everything and make sure that we're engaged with them.

“We believe that our outstanding personcentred care starts and ends with the carers.’Therefore, we provide high-level inhouse training, which is a blended learning experience of online, face-to-face and practical.

The hands on training section is delivered here in our specialist training room that has been designed to simulate as close to a true care environment as we can.

“We also want them to come here and meet the office staff. Not all care providers bring their people in for physical training, so the people in the office are just a name to them. But we see the huge value in putting a face to a name here, no one should ever just be a number in care, staff or client, and this is part of the whole ethos of our business and how we operate.

“When care staff come to us, they can also move their career through the different brands.

They may come to us to work within home care, but then find they want increase their skillset and transfer into the complex care. There are always options when you come to work for us.”

And as the business continues to grow, the Komplex Care ethos remains the same.

“We stand for - quality, transparence and honesty, and delivering the best possible service for our clients and Commissioners.”

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The Jury Is Out Rehabilitation of Prisoners with Brain Injury Heather Batey, managing director of brain injury rehabilitation specialist Reach, addresses the vital issue of supporting those in the criminal justice system who live with brain injury Recently there have been a number of publications, articles and initiatives concerning the long ignored subject of historic brain injury amongst the prison population. Reach would like to congratulate The Disabilities Trust on their excellent work bringing this to the attention of decision makers and for their initiatives within the prison and probation services in England.

We would also recommend the academic review written for H.M. Inspectorate of Probation – Traumatic Brain Injury: Academic Insights (2021/09) by Hope Kent & Prof. Huw Williams as an excellent summary of the current situation.

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To r e c a p s o m e f a c t s – > In the general population around 2 in 100 people have suffered a moderate to severe Traumatic Brain Injury (TBI).

In the prison population this is 15 in 100 people. > Out of a group of 58 young (15 – 18) male offenders The Disabilities Trust found 58 per cent had suffered a TBI before or at the same age as their first offence. > Of this group 54 per cent had been in custody more than once. > Brain Injuries reduce the ability to deal with emotional self-regulation and increases frustration and agitation. TBI is associated with higher levels of reaction aggression.

It is clear that the prison population has a higher level of TBI than the general population and that it plays a role in first offence and repeat offence behaviour. It is fair to conclude that brain injury influences the current size of the prison population.

Amongst the general public there are

some desires and expectations concerning the functioning of the judicial system which are significantly impacted by the prevalence of brain injury amongst the prison population.

These ‘apple pie’ statements include: > A desire to see lower levels of crime on our streets > Fewer people in prison > Custodial sentences that reduce the likelihood of repeat offending Ve r d i c t – I t ’s n o t g o i n g too well at present The provision of good rehabilitation must play a role in meeting the electorate’s desire for lower levels of crime by identifying and supporting those living with TBI. The challenge will be to provide the right intervention at the right time.

In this editorial I would like to make comparisons between Reach’s experience with people living with TBI in the community over the last 30 years and the challenges that will be faced when extending rehab to prisoners.

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When is the right time for rehab?

It is generally agreed that a good rehabilitation programme is “The Right Rehab at the Right Time”.

There are three significant points at which rehabilitation could be initiated: Original Injury It seems that many prisoners have suffered a significant brain injury before their first offence. This highlights the need for a rigorous approach to identifying brain injury in all A&E and doctors’ appointments and hospital admissions when there has been indication that a blow to the head might have been sustained. The causes of the injury may be RTAs, assault, sports injuries and falls, in fact anything in which the head received a blow.

Identification and treatment at this early stage will almost always fall upon the NHS. You may scoff and say that improvements in treatment at this stage is ‘pie in the sky’ considering the difficulties that the NHS is working under. Reach knows from experience that brain injury frequently goes undiagnosed, especially when there are other, more obvious, physical injuries. However, the earlier rehab can be provided the better the prognosis.

The challenge for the NHS is not dissimilar to that faced by the governing bodies of rugby, who have introduced simple screening protocols for any head injuries in the amateur game and a hierarchy of recommended actions.

Working with a major insurance company, Reach developed its Headlight service, which is an online screening service. Headlight is currently used as a triage facility for RTA

victims who may have sustained a head trauma.

It identifies the relative severity of the head trauma (if present) and indicates the nature of any rehab required. It is commonly reported in many branches of medicine that receiving a formal diagnosis can be extremely beneficial to clients. It can provide reassurance, make clients more rigorous in undertaking treatment and more mindful of their symptoms. Certainly, it is our experience that providing feedback on the results is beneficial to both the clients and the funders.

Being in a position to make assessments and offer assistance at the earliest possible stage could over time show significant improvements in first time offending. This would require the development of a screening tool/ questionnaire which can be easily completed and assessed, with concrete actions in the same way as Rugby has developed protocols.

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Entering the judicial system When someone is first taken into custody their background and medical history will almost certainly be unknown to the police, however difficult or threatening behaviour being displayed may stem from problems caused by an historic head trauma/injury. The use of a screening tool at this stage could help the police to be swiftly aware that there are other factors in play.

As a brief aside with potential relevance to this area, it is worth mentioning that recent years have seen a plethora of data from medical research into the blood biomarkers that are present post-TBI, with a newly published study¹ reporting that the presence of certain biomarkers on the day of injury are now considered to be reliable enough indicators to aid in the decision making to recommend brain CT. While significant elevation of the biomarkers assayed in this study are short-lived, there is ongoing research into others that may yield useful diagnostic information for considerably longer periods post-injury.

A 2020 study² observed ice hockey players from Sweden and the USA with Post-Concussive Syndrome (PCS) or Acute Concussion (AC) diagnoses. The results of this study showed some promise in that the presence of a particular protein in the blood, neurofilament light chain (NfL), is a positive indicator for PCS for up to 5 years post-injury. If my understanding is current (and be warned, I have wandered quite a bit from my clinical expertise here), potential confounders need to be understood before any useful test to detect

1Frederick

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the presence of serum NfL could be developed, let alone deployed in the field. However, the thought of having such a relatively cheap and portable diagnostic test that could be used in environments like police stations or prisons is an exciting prospect for a neuro-OT. In November 2021 The Disabilities Trust announced that they were rolling out a new training package to all healthcare workers within prisons and probation services. The aim of the programme is to prepare staff to work with brain injured individuals, providing tools to support service users with the complex needs associated with brain injury. This is an excellent initiative but doesn’t necessarily replace the need for the formal identification of the injury.

While awaiting a court appearance or on receiving a non-custodial sentence there should be options for the provision of rehabilitation which do not have to be an intensive clinic based service. Reach have been running remote programmes for clients with PCS for several years, which is applicable to all PCS sufferers regardless of the cause or their current location.

We have found remote rehabilitation delivery extremely beneficial for individuals whose work, life style or caring responsibilities make it difficult to attend routine appointments.

This type of rehabilitation would be an ideal vehicle for delivering TBI education and strategies to help those with brain injuries cope with memory issues and emotional/ behavioural issues, and could be provided to those who are both within the community and the judicial system.

Custodial sentence and release Reach has 30 years’ experience specialising in rehab for moderate to severe TBI in the client’s home and community. A major objective is to enable the individual to maximise their potential and to become as independent as possible.

There are a number of significant advantages to working within the home setting as opposed to that of a residential rehab facility. These include focusing the individual on ways to cope with day to day challenges and utilising the support of family and friends. TBI sufferers benefit from the stability of a regular routine and the rehab programmes often use the development of these routines as a way of introducing coping strategies. This structure of programme has been extremely successful for clients who are at home, but how transferable could it be for those in prison?

Good rehabilitation programmes start with realistic goal setting and it is undoubtedly possible to identify personal objectives with an individual even in a custodial setting.

Designing rehabilitation activities which build coping strategies may be challenging, but not impossible for the therapist. The personal objectives of the individual may focus on life when they are released and practical skills, such as cooking for themselves, may be possible within the prison.

Techniques to cope with memory issues may also be utilised within a prison setting however, issues associated with organisation skills will be difficult as the level of autonomy will be relatively low. As mentioned previously, TBI sufferers often benefit from having a daily routine however, the routine of prison life is imposed rather than evolved and this may be a disadvantage upon release, as they may be unable to recognise the need for, or have the skills, to develop one for themselves. This raises an important point about skills transference, in that there is a strong argument to support the need for some continuance of rehabilitation in the community for any programmes that begin within the boundaries of a prison walls.

The Disabilities Trust have carried out projects in three prisons where they utilised link-workers to work 1:1 with offenders with a TBI. These link-workers had a very wide brief, covering welfare as well as brain injury specific issues.

The projects were very successful for the individuals involved but highlighted the need for the provision of rehab and support more widely across the prison population.

K Korley et al., Prognostic value of day-of-injury plasma GFAP and UCH-L1 concentrations for predicting functional recovery after traumatic brain injury in patients from the US TRACK-TBI cohort: an observational cohort study, The Lancet [Online] (2022) https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(22)00256-3/fulltext (Accessed 15 August 2022) 2Pashtun Shaim et al., Neurofilament light as a biomarker in traumatic brain injury, Neurology via NIH National Library of Medicine [Online] (2020) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7455357/ (Accessed: 15 August 2022)

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Environmental challenges A recent encounter with a prison healthcare worker highlighted how it can sometimes be difficult to complete welfare programmes with prisoners. For instance, in response to an incident within the prison, prisoners can be locked down for several hours, days or even weeks. On other occasions a specific prisoner may be transferred to another facility with very little notice. Any of these events make the currently utilised methods of delivery more than a little inconsistent at times, which is less than ideal in an area that demands consistent inputs to succeed.

The use of the kind of remote communication tools that Reach utilises to deliver screening and therapeutic sessions have already been employed to substitute face-to-face visitation in prisons across the country through much of the pandemic, so there is no reason why certain aspects of neuro-rehabilitation therapy could not be delivered via such means. This potential to remove the prisoner’s physical location from the logistics of treatment delivery could offer a paradigm shift in the provision of such services.

The rehabilitation programmes provided by Reach mainly focus on enabling the individual to function within their own homes and communities, addressing day to day issues.

While in custody, the day to day issues are likely to be around interacting with other prisoners

3Ministry

It is clear that the prison population has a higher level of TBI than the general population and that it plays a role in first offence and repeat offence behaviour.

It is fair to conclude that brain injury influences the current size of the prison population.

and prison staff, and dealing with regulating their own behaviour. It is an advantage when the rehab is happening at home, where the individual is surrounded by friends and family who can themselves benefit from education about dealing with brain injury.

In prison, there is no real family and the community is of a very different nature.

The individual will not have the advantage of close family support and a normal community to reintegrate with, but there could be substantial benefits if this education is made available for fellow prisoners, helping them to understand what can be erratic behaviour.

Providing rehabilitation within the prison setting will inevitably have limitations but at some point, these prisoners will be released and return home. There they will confront similar challenges to those experienced by brain injured clients returning from hospital or residential rehab. These include fitting back into the family, the self-discipline required for returning to work, dealing with paperwork and all the other pressures that society automatically assumes an adult can deal with.

Any prisoner would benefit from support with these issues but in the case of someone with a TBI, these issues are magnified through the lens of the brain injury. Ideally, a follow-up tranche of rehabilitation would be made available, focusing on the new ‘real world’ challenges.

Resources, Resources, RESOURCES! All this support requires substantial resources, where on earth will they come from? At every stage in the process that I have described we are talking about services which are already seriously underfunded. To delve any further into that question takes us into the realm of economics and politics which is well out of the remit of a neuro-rehabilitation specialist, but one may well ponder the societal value proposition of funding such treatment. There is a commonly held belief that most of HM prisons operate a revolving door, a belief that is sadly backed up by statistics from the Ministry of Justice which consistently records re-offending rates of around 60 per cent in adults released from shorter (< 12 months) custodial sentences³.

Whilst it would be a stretch to imply that all of this re-offending was due to the behavioural sequelae of an undiagnosed head trauma/brain injury, it is at least logical (if not scientific) that a majority of this re-offending is due to problem behaviour and that a proportion of this will be attributable to past head trauma. Until there is more data available to come to a reasonable hypothesis, there is plenty of room for conjecture to fill the gaping void that is the absence of consensus and enough anecdotal evidence to fuel conjecture.

There is a glimmer of hope on the horizon.

In December 2021 the government agreed to create a panel board to develop a cross departmental strategy for ABI. This is being co-chaired by Gillian Keegan and Chris Bryant and it completed the Call for Evidence stage in June 2022.

Let us hope that, for the sake of people with ABI everywhere, this survives the current political upheavals.

Reach is a specialist neuro-rehabilitation provider, offering national home-based and remote neuro-occupational therapy services to clients with minor to catastrophic acquired brain injuries.

To arrange an assessment for your client, please contact our team at info@reachpersonalinjury.com or call us on 01423 326000.

of Justice Collection - Proven reoffending statistics [Online] (2022) https://www.gov.uk/government/collections/proven-reoffending-statistics (Accessed 1 August 2022)

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Rehab after traumatic brain injury: building strength and confidence with GripAble When 26-year-old Martyn* experienced a traumatic brain injury just one day before he was due to start a plumbing training course, everything changed.

After four months in hospital, Martyn was finally discharged, but continued to experience weakness and reduced range of movement in his right hand, which had a significant impact on his function and participation in everyday life.

Feeling withdrawn and fatigued, Martyn struggled to stay motivated with daily rehab training – that was until he was introduced to GripAble, the mobile assessment and training platform for home-based rehabilitation, and its tailored programme of daily exergames.

This article explains how use of GripAble enabled Martyn to take control of his own recovery following his accident and confidently move forward with his life and career plans.

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*Real name not disclosed

Traumatic brain injur y Martyn suffered a brain injury as a passenger in a road traffic collision, resulting in several bleeds on the brain and multiple fractures. Community assessment showed a number of physical impairments including higher level balance deficits, reduced wrist and elbow range of movement, and stiffness on his right side.

Martyn also experienced pain in his right arm and reported it feeling weaker.

After four months of acute rehabilitation in hospital, Martyn was discharged home, but as he was independently mobile indoors and did not have a coordination

impairment in his right arm, he wasn’t provided with a programme for his continued rehabilitation.

Previously a keen gym goer, Martyn stopped visiting the gym as he felt unsafe holding weights. His family also observed that he was carrying out everyday tasks like making a hot drink with his left hand only, as he feared dropping a heavy, hot kettle. Prior to his injury, Martin was right-hand dominant.

Martyn’s rehabilitation required a multidisciplinary approach to address his functional and participation-based limitations due to his physical and cognitive impairments postbrain injury.

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Getting to grips Once in the community, Martyn was assessed by an occupational therapist and physiotherapist to establish a better understanding of his neurological impairment.

Initial tests showed that he presented with 4/5 power in his right upper extremity for elbow flexion, wrist flexion and extension, and grip. To delve deeper into how his right-hand compared to that of his left hand, Martyn’s therapists used the GripAble platform to assess his grip strength, which showed a mean score of 23.7kg for his right hand, and 32.4kg for his left.

To help address this imbalance, Martyn was provided with a four-week, personalised programme of exergaming on GripAble to reach a minimum of 300 repetitions of grip and release per day for the first week, gradually increasing up to 600 repetitions at week four.

Martyn’s daily rehab schedule was kept flexible to allow for concentration, memory, and attention deficits as well as fitting around his social life supported by friends and family.

He also followed a tailored resistance training plan with three sessions per week, as well as practicing ADLs (activities of daily living) to help build his confidence.

To promote adherence to his programme, Martyn’s therapist was able to review his training history though the GripAble platform and send encouragement emails and text messages to keep him on track.

In just 28 days, Martyn displayed an improvement in his grip strength, with his right hand displaying an increase from 23.7kg to 29kg when assessed on the GripAble platform.

In just 28 days, Mar tyn displayed an improvement in his grip strength, with his right hand displaying an increase from 2 3 .7 kg to 2 9 kg w h e n assessed on the GripAble platform

The games on the GripAble platform were very enjoyable and interactive, which helped me stay engaged and motivated me to complete tasks set by my physiotherapist.

Moving for ward By the end of the four-week programme, Martyn was confident about a phased return to exercising in the gym and lifting weights.

At this point in his rehab, a deficit was still observed between his left and right hands, but the training allowed Martyn to move onto exercises with higher loads and feel safe enough to do so, thus giving him a leisure activity to return to.

Martyn reported that GripAble allowed him to feel he was being productive in his rehab as, due to fatigue and coping with the mental effects of his accident, he previously did not always want to do his weight training exercises at home. Using exergames in short snappy sessions made him feel he had some control over his improvements.

Of his rehab experience, Martyn said: “My upper limb rehab was brilliant and the GripAble device helped a lot in terms of my grip strength. I was struggling, but after a few sessions on the GripAble device, my arm felt better and stronger. The games on the GripAble platform were very enjoyable and interactive, which helped me stay engaged and motivated me to complete tasks set by my physiotherapist. I looked forward to using GripAble as it helped me, but it was also fun.”

Martyn’s neuro-physiotherapist Bilal Sheikh commented: “I have always been interested in incorporating modern technology into rehabilitation, from using games consoles with people at risk of falls, to electrical stimulation bikes for people with acquired brain injuries and non-traumatic spinal cord injuries, to name a couple of examples.

“I found out about GripAble back in 2018 through my general research into what I could bring into my practice next and adopted the device in the rehab centre I worked at. Now that I am based in the

community, GripAble’s portability, ability to track efforts and progress, take objective measures and generate reports makes it a very useful tool for me. The engagement and fun aspects created through exergaming really promoted Martyn's adherence to therapy which helped lead to such a significant change in his result within a month.”

Martyn has since signed up for a construction-related college course and is preparing to learn how to drive.

Affordable remote rehab GripAble is a mobile assessment and training platform which includes bespoke hand-held sensors, mobile hardware, software, in-built gamification and data services, to enable home-based rehabilitation for patients with a wide range of neurological and musculoskeletal conditions including upper limb spasticity.

GripAble’s unique handgrip sensor connects to a mobile app, allowing users to partake in specifically designed activities selected by their therapist, to train core hand and arm movements.

GripAble has been designed with remote rehab at its heart to enable ongoing training at home, even when face-to-face therapy isn’t possible. With the cost of living hitting many hard, GripAble has launched an affordable monthly rental option for homebased customers. At less than £1.50 a day, the rental has no minimum contract, making it an ideal option for people with short-term rehabilitation or training needs.

Chat to our friendly team of experts to see if GripAble could help you, your family member, or your patients.

For more information, visit: www.gripable.co

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When Cathy was injured in a hit and run, thankfully she escaped serious physical injury, but the psychological impact was profound.

Here, NR Times learns how she has been supported in rebuilding her life by Think Therapy 1st - and how its focus on rehabilitation has enabled Cathy to live a life beyond all her hopes and expectations

Living life to the max as the ‘new me’

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When Cathy speaks to NR Times, it becomes clear that she is a very busy lady. Having just returned from a wedding in the North of England - a long trek from her home on the South coast - in a couple of days’ time, she will be riding a Harley Davidson for the first time, building on an interest in motorbikes she has had for over 50 years.

She also shares how she enjoyed a recent mini-break to Oxford, is about to embark on a Scandinavian cruise and has booked a trip to Cyprus for her 70th birthday next year.

This is all interspersed with her days spent enjoying walks along the seafront in her hometown of Hastings, seeing her grandchildren - one of whom recently took part in a production of Bugsy Malone, which Cathy attended, of course and making the very most of her life.

“I’m loving the ‘new me’,” she says. “I feel like a new person.”

For while Cathy is now living her best life, back in October 2019, the story was very different.

Having been hit by a car outside her local Tesco, which then drove off leaving her with a head injury, Cathy confesses she went on to hit “rock bottom” and felt completely unheard and overlooked.

While she was spoken to by police in the ambulance, it took another seven months for them to take a statement from her. And Cathy, who had pre-existing fibromyalgia, struggled to get any medical support appointments at her GP surgery were almost non-existent - and the onset of the COVID-19 pandemic meant she became confined within the four walls of her flat.

“I didn’t want to go out, I was scared to cross the road. No one was listening, I felt forgotten about. I was at the absolute lowest point,” recalls Cathy.

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But after more than a year of struggling to secure any support, Cathy met Fiona Peters, an occupational therapist at Think Therapy 1st (TT1st), following a referral from her personal injury solicitor and insurer.

With a focus on functional rehabilitation, which empowers clients to be able to fulfil their aspirations and goals - rather than compensate with easier-to-achieve alternatives - TT1st has a proven track record in supporting people to achieve outcomes that far exceed all expectations.

Through making rehab enjoyable, and with rehabilitation built into absolutely every activity the client undertakes - and a programme geared around the client’s own interests - TT1st is gaining a strong reputation for its ability to empower people to take charge of their own recovery.

From the very first meeting, Fiona identified the psychological problems at the root of Cathy’s recovery, which were proving such a

N o w, I c a n cope a lot better with what the day throws at me, I can cope with life in a way I f e l t I c o u l d n’ t anymore.

barrier to her being able to enjoy a quality of life.

“I was really struck by this idea that she felt like an old lady, how she had gone from being a really active grandmother to being on her own, and that this was her life,” says Fiona.

“There was a lot of health anxiety and a lot of fear avoidance behaviour. Even to get around her flat, she was using the walls to support her. She was de-conditioned as she hadn't been out much, so there wasn’t much exercise tolerance.

“The injury had absolutely knocked her confidence and impacted all the symptoms of fibromyalgia to the point she could not control it. Her concentration was really, really poor, she couldn’t sustain her attention for any length of time, and her mood was very low.

“But our focus was on making and keeping a happy Cathy. We started working together and we made a plan of how we could achieve this.”

Adapting Cathy’s sessions to two shorter periods each week, rather than one single session, to accommodate her lack of ability to concentrate, Fiona identified activities which would engage her and through which occupational therapy could truly make an impact on her life.

From her career as a cook, Cathy was adept at cooking, and loved knitting as well as walking - all of which Fiona saw as opportunities to rebuild Cathy’s confidence, while giving her the tools to battle the impact of her low mood and fibromyalgia symptoms.

“We started really small indoors and then started to venture out,” says Fiona.

“Cathy had a lot of anxiety about crossing the road, which was very physical, she would get very clammy and have heart palpitations. But we started small and planned to meet some family in the park across the road opposite where she lives, which was a real boost as COVID restrictions started to be lifted.

“We were working on small, achievable goals to help rebuild her confidence and increase her tolerance for activities, and built up from there.

“We did some dinner clubs where we cooked and planned some meals together and then sat down together to eat them.

Cathy loves National Trust sites, so we went out to visit them and to enjoy a walk, which always involved cake and coffee too.

“Cathy is an absolutely prolific knitter, but she hadn't been able to do that for a while.

She just couldn't concentrate anymore. So by teaching me, we were able to re-engage her in it. I can’t say I was very good - I did three

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I t ’s f a n t a s t i c t o s e e h e r l i v i n g t h e l i f e s h e i s n o w, w h i c h i s a w o r l d away from the Cathy I met back in December 2020

stitches while Cathy knitted a whole baby outfit! - but to see her re-engage in something she loved was fantastic.

“And as well as the activities, because Cathy had been living with her health condition for a long time, we introduced some education around the ‘boom and bust’ cycle of pacing yourself, not overdoing it, which would help her to live her life again longer-term.”

For Cathy, who admits to not being sure what to expect initially, the involvement of TT1st in her rehabilitation was a welcome turning point.

“It was fun, it wasn’t what I expected at all,” recalls Cathy.

“I've had sessions with people before to talk about my depression, but I stopped going

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because they wanted to dig up things I didn’t feel I wanted to talk about. But with Fiona, it was fun and we had fun together, and that made all the difference.”

Quickly, Cathy began to progress through her engagement in, and enjoyment of, her rehabilitation programme.

“I wanted to focus on things Cathy was interested in, and for her to feel heard. We also really tapped into her personality, which is always ‘I’ll have a go’,” says Fiona.

“And through her commitment to having a go and pushing herself, we set a goal of doing a 5k walk. We hoped to do that towards the end of our sessions, but half way through she smashed it.

“Cathy has lived in this area for most of her life, but she had come to feel very isolated from it, so by walking in places she knows and loves and had enjoyed with her children and grandchildren, it gave an extra significance to everything we were doing.”

To help address some of Cathy’s deep-rooted issues, which had never effectively been addressed previously, TT1st introduced Traumaticus, a national network of practitioners to deliver therapy, and Cathy met therapist Tom. “Working together and in a multi-disciplinary way, we were able to address how Cathy’s health was impacted by her mood and inactivity, and Tom was very gentle in doing so, which was very important,’ says Fiona “We worked on ways to recognise the triggers that sink Cathy’s mood and built in strategies to help. Her sleep was very bad, which fed into

the pain, depression, low mood and inactivity, and at last Cathy was given some medication to address that.

“We also supported her to advocate for herself, which is something Cathy had not felt able to do for a long time.”

One particular breakthrough in this came in Cathy’s dealings with her local GP surgery, with whom she felt largely ignored.

“I could never get an appointment, they just wouldn’t listen,” says Cathy.

“I’d been fighting for weeks to see a doctor, they said the mental health nurse would phone me back but I didn’t hear from her for three weeks.

“But then one day, I insisted on being seen by a GP, I wouldn’t take no for an answer.

“And I was seen by the most wonderful doctor.

That was a big moment for me.”

Fiona says: “At TT1st, our approach is to never do for a client what they can do for themselves.

I could have intervened earlier and rung the surgery, but it was really important that Cathy learned to do that for herself, so she could do it on her own in the long term.

“We had a goal of working towards her doing that, and typically of Cathy, she smashed it.”

Having worked with Cathy for 12 months during which she made beyond-expectation progress in terms of both her physical and psychological recovery - Fiona’s occupational therapy work with Cathy is now finished, but the friendship forged between the two women during their time working together means they still keep in touch.

“Cathy is of course a very busy lady, but it’s lovely to meet for coffee when she’s free,” says Fiona.

“And of course it’s fantastic to see her living the life she is now, which is a world away from the Cathy I met back in December 2020.”

Cathy says: “I do feel like a new me. I don’t look back, that’s in the past, and we’ll leave the past where it belongs.

“Now, I can cope a lot better with what the day throws at me, I can cope with life in a way I felt I couldn’t anymore.

“I’ve enjoyed my sessions with Fiona so much.

It was not what I expected - I never expected to enjoy myself! But now, I’m really happy and looking forward to what’s ahead.”

SHORT

FILM COMPETITION

Submit a film for the 2022 UKABIF Short Film Award – Whatever Your Experience of Brain Injury we want to hear your story.

Did your child struggle at school following their brain injury?

How did a sports concussion affect your every day life?

How did life change for you and your family after a road traffic accident?

DEADLINE FOR ENTRIES 30th September 2022

PRIZE £500

Sponsored by

For more information please see www.ukabif.org.uk/filmaward

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‘Be the occupational therapist yo u t ra i n e d t o b e’ The move from NHS to independent practice can be a daunting prospect, with many myths and misconceptions surrounding what working in the private sector can entail.

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NR Times speaks to Rehabilitate Therapy Ltd about their pioneering approach to debunking the falsehoods and giving clarity around the subject - while being clear about its many advantages for clients and occupational therapists alike.

The concerns of NHS therapists around working fully, or partially, in private practice are common and understandable. Is it ethical to work in private practice? Will I be supported?

Is being self employed for me? And what about tax!?

Fear around taking such a step into the unknown is something that occupational therapy practice Rehabilitate Therapy

experience often in their recruitment.

As a rapidly-expanding business, needing to move beyond their traditional channels of recruiting by recommendation, the conversations with would-be new additions to the team highlight the same longstanding concerns.

“I think once you work in private practice, you realise the opportunities there are to be the therapist you trained to be, to get to know your clients and to invest the time in doing that. But we realised the challenges that exist in supporting OTs to see and believe that,” says Dr Kate Heward, clinical director of family-run Rehabilitate.

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Option Too - demystifying private practice In response, and to help support the decision making of occupational therapists (OTs) in making the choice as to whether working in private practice is for them, Rehabilitate has created an initiative called Option Too to support and educate OTs that private practice is an option too.

The unique approach comprises material compiled wholly with input from Rehabilitate OTs who have made the move from NHS to private practice, and includes videos, surveys, blogs, Q&As and also a – soon to be available downloadable guide. There are also events and online forums to attend.

Dr Phil Crowther, business director of Rehabilitate Therapy - which is recruiting OTs across the North and Midlands, to add to its existing team of 45 associate OTs - says Option Too was designed to “debunk” the myths and false perceptions about what moving into private practice may mean, and provide authentic and straightforward information and views.

“Option Too is the background to our recruitment, it’s a really open conversation about what working in private practice is like and to support OTs to make a really informed decision,” he says.

“We know people worry about whether it’s totally ethical to move into working privately, but we have a whole team here who are doing an amazing job as OTs and most of them also continue to work in the NHS alongside working with us.

“No OT has ever come to work for us and has got six or 12 months into it and thought independent practice is not for them. I think once you have the understanding of what it really involves, that’s such an important step, and that’s why we wanted to open the conversation.”

The ‘ethical’ conflict many perceive is also often cited as a concern, says Dr Heward.

“Ethics are often a consideration in making the decision to move, but probably more so since COVID, because of the pressures on the NHS and how stretched the resources were, which saw many of our OTs needing to give much more to the NHS because of that,” she says.

“It’s often a real shock for OTs when they come to work with us, how much opportunity they have to spend time getting to know a client, establishing the trust and rapport to really develop client centred goals.

“We’ll tell them you don’t have to go in and

"I think once you have the understanding of what it really involves, that’s such an important step, and that’s why we wanted to open the conversation." immediately be chipping away at the perceived goals if you’ve got a challenging situation. You can build that into your plan, build the rapport to get a relationship going, and take it from there.

“Seemingly small gains, but that are really important to the clients, are then often the gateway to generating more significant goals, new things have come about because of the client’s progress and their relationship with their OT. “There’s a big mind shift in knowing you can incrementally do that, with the resources and support of Rehabilitate and the MDTs. “I think it’s enlightening and gives them a fresh look at therapy.”

Infrastructure to support change Branching out from the NHS and becoming partially, or even fully, self employed with different working practices can be a daunting thought - but one which Rehabilitate has the infrastructure in place to support, says Dr Crowther.

“I think people know the NHS and what that offers, you’ve got the structure of support, the infrastructure, the backing, so it feels safe.

But then the other extreme is being an independent practitioner, where you’re totally accountable for everything from reporting, marketing, invoices to budgets and insurances,

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Demand-led growth

"It’s often a real shock for OTs when they come to work with us, how much opportunity they have to spend time getting to know a client, establishing the trust and rapport to really develop client centred goals " everything. So that’s daunting,” he says.

“But with us, we’re in some ways the ‘middle ground’ to that. We’ve got 45 OTs now and there’s a fantastic community here of autonomous and empowered people, but with the business infrastructure taken care of, and also mentoring, supervision and support in the background.

“On the business side, myself and the team assist with all of that - it’s not the case of the OTs get paid when we get paid, like with some OT businesses. Timesheets and invoices are routinely processed monthly and OTs are paid quickly.

“And, from speaking to our team, they actually feel really backed and supported in our environment because everything is really clear and there is a very strong team ethos.

“We come from an NHS background ourselves and understand the bureaucracy and barriers that can exist, so we double down on that and aim for simplicity so OTs can get on with being brilliant OTs.” Dr Heward continues: “Myself and Phil pride ourselves on being approachable as directors, we don’t have layers of management, we are always supportive and contactable.

“We have OTs joining us who haven’t had clinical supervision for years, which is a requirement of the HCPC. So every month, either individually or in a group, we discuss and explore our clients and what is happening. It’s really important we

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do that, both as individuals and as a team.

“We have ‘new OT mentors’ who are really experienced members of our team and they will take new associates through the whole process from the clinical induction through to supporting them through their first assessment and report writing, and then take them through to a point where they're ready to be put into our peer supervision groups.

“For example, we find that we need to give support around the shift in independent practice and also working within medico legal process – to achieve this we have additional monthly workshops to explore this. You’ve got to be able to justify what you do to the solicitors or insurers who are funding your recommendations, which I think is very different about independent practice.

“Reporting needs to be much more detailed with justifications of the value and implications if it is not funded, having to be very explicit on that to ensure the client gets the OT they need to maximise their rehabilitation potential. Our OTs tell us how different this is to the reporting in the NHS. “So that’s quite a big shift, and one we do find is one of the main areas where support is needed - but that’s where our infrastructure can really help and where our mentoring and support really comes to the fore, along with report proof reading and editing to ensure our OTs are totally supported and protected.”

Rehabilitate’s recruitment drive stems from a surge in instructions across the North and Midlands. The business is currently recruiting generally across these areas but with a particular need in Cumbria, the West Midlands, East Yorkshire and Lincolnshire.

“This is totally demand-led, we are advertising for OTs for the first time.

Initially, we did it through Kate’s network and through the network of our OTs, and while this continues, we need to look beyond that to ensure we can respond to the demand,” says Dr Crowther.

“Demand is ever increasing, and is particularly crazy at the minute, we’ve never done any marketing campaigns to generate work, this is all based on our growing reputation and the work we do for clients, which leads to repeats referrals.

“Our approach to recruitment is really flexible and informal. As well as Option Too, which is all about being open and starting conversations around independent practice, we are happy for informal and exploratory chats with interested or curious OTs, and often they also chat to our OTs to find out exactly what it’s like.”

“We’ve been growing for some time, but especially since the pandemic. It has really grown a lot, and in response our service has really developed” adds Dr Heward.

“When the pandemic came, we moved to working online really quickly, so we could continue what we offered to clients but also add in new groups and innovations to really help push on with the rehab. That proactive approach has really been very successful and the opportunity for us to facilitate ‘client to client' interactions and relationships has become a really important aspect to our service.

“Geographically too, we are also growing all the time, on the strength of the work that is coming in. It’s a really exciting time - and now we are hoping to add the people to our team to help us continue this.

“We are really keen to work with evermore talented OTs, but also it’s great for OTs as they can be the OT they trained to be.”

To learn more about working at Rehabilitate and moving from NHS into private practice, visit https://rehabilitatetherapy.co.uk/option-too

SPONSORED

UKABIF Fundraising Dinner Sunday 6th November 2022 Manchester Hall, M3 3BT Tier 1 Tables are now on sale for £1,000 per table of 10.

We want to make sure you have every opportunity to network over the course of the evening and to get things started we will include one trustee, one speaker and one intern/staff member on each table so you will have 7 spaces to fill.

Sponsorship opportunities: Sponsor of the wine – £3,000 Welcome drinks – £700 Sponsor of the entertainment – £2,500 Dress code: Smart casual Please email Chloë info@ukabif.org.uk to secure your table at what promises to be a lovely evening.

This will be a lovely evening to relax and meet UKABIF and friends ahead of the UKABIF Summit on 7th November 2022.

Drinks on arrival | Three course dinner with wine | Entertainment | Raffle 39

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

RIDING THE STORM How can case management address the crisis in recruiting and retaining support workers for people recovering from acquired brain injury?

Louise Sheffield, clinical case manager and director of Active Case Management, and Keith Cundall, partner at Fieldfisher LLP, assess the situation for NR Times Recently, case management has focused on the difficulties in recruiting and retaining skilled support workers, following the results of a BABICM survey which identified issues including low pay, unsociable hours, the perceived value of the role and the requirement of skills as reasons why recruitment and retention is more difficult than ever before in this sector.

The results are concerning but they do not cause surprise. Rather, they lay bare the experience of those of us 'on the ground' in case management and related therapeutic roles.

The recruitment and retention of support workers, whether through agencies or else directly employed is challenging, but the role of high quality support workers within the rehabilitation process is as vital as it has ever been.

So what is to be done?

Here, we look at ways of overcoming some of the problems identified in the BABICM survey through stressing the importance of openness and frank dialogue at the recruitment stage, and forging an open and honest relationship with the support worker team from the very beginning of their involvement.

Recruit: For cases with ongoing litigation, the case manager should be considering recruitment at the point of completing the Immediate Needs Assessment. Factors to consider should include: Are there features particular to the client which

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mean that recruitment will need to be more complex? Are there aspects to the client’s presentation which would indicate that particular characteristics are required in a support worker?

Does the client have challenging behaviour? Are there religious considerations or is the gender of the support worker a factor? Where does the client live? Small rural communities may have a smaller pool of potential candidates than a busy town.

These issues should be flagged in the INA report and consideration given to the potential that the recruit process for this client could be longer than ordinarily expected. It may be that a rehabilitation assistant should be considered instead of a support worker and the cost calculations in the INA report should reflect this.

Be bold and be honest when drafting the advert.

Those reading it must be given information about what the role entails, including: information on the shift pattern, likely challenges of the role and, importantly: rates of pay. This is not a time to sugar coat the difficulties of the role, but it is an opportunity to introduce the sense of the support worker being a valued member of a bigger team; not just a team of support workers but also family members, clinicians and the case manager.

The advert needs to highlight the message that the position requires a special person to be a valued part of a special process. Give reassurance that there is a strong network of support and that high quality training is provided.

The wording and placement of the advert should be bespoke to the client; a generic advert which is placed on a recruitment website is less likely to attract the right candidate than a well-crafted advert which is placed on a specialist website.

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

For example: G lives in a small village in Cumbria. He enjoys fell running and has dysexecutive problems meaning that he cannot plan his route or what safety equipment he may need to take with him. An advert placed on a generic recruitment site was unsuccessful, but a card on the notice board of a running club yielded better results.

It was possible to recruit someone who shared G’s interest in fell running and was the right ‘fit’ for the role despite having no experience as a support worker; arguably the right person can be taught about brain injury and record keeping but a knowledgeable person cannot always be taught to be the right fit.

The interview should be a two-way process; an opportunity for the client and case manager to evaluate if the candidate has the required qualities and for the candidate to get a feel for what the role entails. Either side can reject and be rejected.

Consider the setting for an interview. The client’s home would show the candidate the real work environment but introduces confidentiality issues and potential risks.

However a formal interview may not be the most conducive for comfortable conversation, especially if a client is involved and this is an alien environment to him/her.

A recent successful interview involved the client and case manager meeting the candidate in an office meeting room. After ten minutes of chatting, the client and candidate went for a walk to get to know each other.

This enabled the client to know if he would ‘click’ with the candidate while case manager picked up on skills and experience from the application form, references and in a telephone call. Similarly, shadow shifts with current support workers can be valuable in the two-way interview process.

The diversity of backgrounds among team members should be seen as an asset. A client may enjoy certain activities with one support worker and other activities with another support worker. In recruitment we should avoid looking for a replica of someone else.

Retain: The value of good support workers cannot be underestimated. They provide consistency and stability for clients whose lives can otherwise be chaotic. They can give reassurance and peace of mind to family members. Their observations and reports add immeasurable value to the litigation process by evidencing the client’s real experience of life.

We know this. The client often knows this.

Family members know this. But does the support worker?

Support workers need to be given a clear understanding of how they fit into the bigger team around the client and the high value that is placed on them. They should have a place at Multi Disciplinary Team meetings with status which is different from but equal to the professionals around the table.

The additional costs of including support workers in such meetings should be included in the INA Report. Training should be of high standard and specific to the client. Regular contact with support worker colleagues, clinicians and the case manager can promote the sense that a support worker is part of something bigger, something meaningful.

There should be a clear route for the support worker to seek advice and support outside of their regular supervision sessions. When used appropriately, a WhatsApp group can be a useful tool for sharing information and ideas.

In addition to an ethos of inclusivity and positive regard, there are practical measures which can assist with retention of support workers. Predictability of the rota as well as plenty advanced notice of rota changes can give assurance to the support workers and help them to manage their own well-being and work / life balance. Furthermore, if a case manager can alert the support worker from the outset that there will be ‘bumps in the road’ and that there is a contingency plan, a support worker is less likely to be derailed when problems do occur.

The work environment should be as comfortable as possible for the support worker; a safe place is important, especially

where a sleeping night shift is required and the accommodation for the support team needs to be clean and comfortable. This should be identified by the case manager as early as the INA report stage so that funding can be requested to provide a suitable working environment for the support workers.

Career progression for support workers can raise conflicts of interests for a case manager.

In a situation where a support worker has brought about stability for client x, a case manager should not transfer the client to a promotion for client y. However it is known for clients to thrive from the stability of a strong support team to the point where the level of support can be reduced which can provide opportunities for career progression.

The BABICM survey identified the low status of employment as one of the reasons given for recruitment problems.

A case manager who explicitly asserts the high value placed on good support workers can hope to quash this perception, however words must be backed up by deeds. The case manager must encourage an environment of open communication and work to integrate the support worker into the rehabilitation package and wider MDT. Support workers are special people, and the role does not suit everybody. Effective recruitment starting at the content of the advertisement, can find those who are vocationally suited to the role and who will thrive in an environment which is nurturing and supportive.

Recruitment is an expensive process in terms of case manager’s time, but investment in systems such as supervision and training will reduce the need for recruitment while also enhancing the service received by clients.

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SPONSORED

Askham supports MS outpatients in new partnership Specialist Cambridgeshire rehab provider continues to expand the delivery of its life-changing care for residents – with the latest being a partnership with the MS Society to deliver dedicated therapy sessions Having opened its cutting-edge rehabilitation facilities to outpatients for the first time earlier this year, Askham Village Community has now established a partnership to offer to people living with multiple sclerosis (MS).

The specialist care and rehab provider is working with its local branch of the MS Society to ensure people living in the community can benefit from weekly sessions, as well as access to its array of sector-leading equipment, robotic therapy devices and hydrotherapy pool.

And Askham’s specialism in supporting those with neurological conditions - which sees it become home to inpatients from across the country, delivering life-changing results through

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its commitment to person-centred rehabilitation - could see the provider forming partnerships with other groups or charities, for the benefit of those who need its resources.

“We’ve had wonderful feedback through opening up our facilities to outpatients, lots of smiles and happiness, and really importantly, lots of opportunities for social interaction both for our residents and our outpatients,” says Aliyyah-Begum Nasser, director of Askham Village Community.

“One of our core values here at Askham is that of community, and to be able to widen our community by supporting others is very important to us.”

The partnership with the Cambridge, Ely and Newmarket MS Society Group came after lengthy discussions - pre-dating the pandemic - between the group and Askham, based in Doddington, to ensure they could jointly create something that would be effective for its 300 members.

The outcome has been to devise weekly therapy sessions for people living with MS, which focus on encouraging motor functionality, with the MS Society Group also looking to fund private physio and hydrotherapy at Askham.

“The group and its ethos really spoke to us, they were very cohesive and clearly had such fun together, and that was great to see. We could really see how us working together would be a good fit,” says Aliyyah.

“We met Bob Bragger (a volunteer with the MS Society group, who has spearheaded the partnership) and there was a real connection there. I think while us working together is still in the early stages, it is going to work very well. It had been in the pipeline for a very long time and

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I’m really pleased we could create something like we have.

“As well as the weekly classes, our doors are always open for people to come into our cafe, enjoy our grounds, and experience those social opportunities. It’s fantastic to see people having fun together and interacting.

“I can’t stress enough how important that is, particularly after the pandemic forced us to restrict access for so long to keep our residents safe. Social interaction is absolutely vital in this.”

Having opened up its outpatient facilities earlier this year to people living with neurological conditions in the local community - enabling them to kick-start their rehabilitation after the pandemic saw so many regress in their ongoing recovery through a lack of access to provision -

Aliyyah believes the social opportunities have an important role to play, in addition to their physical progress.

“As well as the formal and structured work we do with outpatients, so many of whom are now resuming their rehabilitation after a difficult two years, the informal opportunities we can offer at Askham are a vital part of our community,” says Aliyyah.

“We’re getting that buzz back at Askham we had before the pandemic, which is so important for our residents, and now for our outpatients too.

“People can come into Askham knowing that all of our staff are trained in things like mental capacity and behavioural support, whether that is someone working in care or in our cafe.

Everyone here understands what people who live with neurological conditions experience, whereas the understanding in the wider public forum can be variable, so I think that makes people feel a lot more comfortable about coming here. It’s a safe environment for them.

“Our cafe is a wonderful resource, and now we can open it up again to members of the public. We encourage our residents to visit too.

Pre-pandemic, we would see many of the same residents in there every day, interacting with people and enjoying themselves.

“And also, importantly, to get there, they can enjoy a walk through the courtyard and the landscaped gardens to see the outdoors and get some fresh air. This gives an added purpose

to them going there, which is fabulous and of great benefit.

“I’m so pleased we can now welcome outpatients, and offer the dedicated sessions for people with MS, this adds greatly to our community.”

Going forward, Askham is keen to explore the potential of working with other groups who support people with neurological conditions in and around Cambridgeshire.

“We don’t want to go too far too fast, as we are just opening up again after the pandemic and the focus remains on keeping our residents safe, but we could definitely look at working with other organisations,” says Aliyyah.

“Supporting people with neurological conditions is our specialism and we’d be really open to working with people from organisations which align with that. Two of our homes at Askham are dedicated to dementia and elderly care, so there is also the potential there, too.

“Our relationship with the Cambridge, Ely and Newmarket MS Society Group is going very well and it’s wonderful to work with such a dedicated and committed group of people.

“I think that shows what can be done, and the ways that Askham can support people living in the community with their physical and mental health needs and rehabilitation.”

Bob Bragger added: “We’re delighted to have teamed up with Askham Village Community to offer specialist treatment to people with MS in the region.

“MS is relentless, painful and disabling, yet hundreds of people living with the chronic condition aren’t able to get the vital rehabilitation they need.

“When we heard of Askham’s forward thinking facilities – that are on our doorstep – it was a no-brainer for us to get in touch!

“By opening their doors, Askham will help us provide tailored rehabilitation – including stateof-the-art robotics, specialist physio with adapted fitness machines and hydrotherapy – to dozens of people living with MS. “We’re incredibly grateful to the fabulous staff at Askham, and look forward to working together to support the MS community.”

Askham is always welcoming new residents and staff into its growing community. For further information, please contact 01354 740269 or visit askhamvillagecommunity.com

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INSIGHT

‘I was relieved but broken’ After waiting for a diagnosis for seven-yearold Amelia Garnett’s neurological condition for six years, genetic testing has recently confirmed she has KCNB1-related developmental epileptic encephalopathy.

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Here, her mum Marie - herself a brain tumour survivor - discusses the long search for a diagnosis, how the family cope with Amelia’s condition, and why she is running the London Marathon to raise money for children with additional needs like her daughter “We have known since Amelia was very young, probably around the time of her first birthday, that there was something wrong.

As she got older, it became increasingly easy to spot.

“Although we’ve always been reassured that kids develop at a different pace and no two children are the same, as other children started to do things, Amelia was being left increasingly far behind. While she is my only child, and people often dismissed my concerns because I didn’t have another child to compare her development to, I thought that surely if 99 children are doing something but one isn’t, then there must be a problem?

Surely that must be a red flag?

“These issues have become increasingly obvious as time went on, that she was not developing like other children were, and it was only when she did get that bit older that we actually got somewhere.

“Amelia is now seven and is non verbal, has extensive learning disabilities, and can’t dress or feed herself. She also has epilepsy and seizures every day.

“She had blood tests done, which were normal, so we were then referred to genetics, who did some tests which also came back normal, so we were sent back to the paediatrician. We were referred time and time again, trying to find out what the problem was. It has been a long process.

“It was very clear that something was wrong, but really difficult to not know what. It was a relief that the initial tests came back normal, so we knew there was nothing life-threatening, but that didn’t help us to understand what was actually going on.”

INSIGHT

The importance of finding a diagnosis “Having had three life-saving operations after my brain tumour - as well as a Chiari malformation and hydrocephalus - I know how vital a diagnosis can be, so you can get the treatment and support that you and your family so badly need. But we couldn’t get that for Amelia, as we didn’t know what was wrong.

We needed that diagnosis.

“Community paediatrics referred us to have full genome sequencing for Amelia, myself and my husband Darren, which was significantly delayed because of COVID, but that was very worrying too. What would it find? What would the results show?

“We were given support in advance of these tests, because if you found that as a parent you were the reason your child has these disabilities, how would you cope with that?

And if it was familial, how would that impact on other members of our family and any children they may go on to have? There was so much to consider.

“We were told full genome sequencing takes six months, and almost six months to the day, in December last year, the letter arrived. It confirmed Amelia’s diagnosis - KCNB1-related developmental epileptic encephalopathy - and that it was not in either mine or Darren’s genetics.

“KCNB1 is a rare condition which sees children experience delayed development, learning disabilities, and possibly epilepsy too - the extent of these can vary in each case, from very profound to mild, and it’s a waiting game to see what happens.”

Dealing with the reality “While it was a big relief to actually have a diagnosis, it was so upsetting. I felt relieved, but also broken by it.

“I think I cried for the whole of December. I suppose I was in mourning in a way, for the future I hoped Amelia may still have had until it’s actually confirmed otherwise, you hope she will just catch up with all the other kids, that all the therapy she’s having will have miraculous consequences.

“Now, knowing her diagnosis, it’s very unlikely she will ever be entirely independent, and will always need to be cared for and supported in her life. We aren’t young parents and it’s always on your mind about what will happen after we’ve gone or can’t take care of her anymore, who will care for her then?

“But when it got to Christmas Eve, and we still hadn’t put all our decorations up, it was a bit of a turning point for me. I said to myself ‘Pull your socks up, love’ and put the decorations on the fireplace, got on with things, and we all had the best Christmas ever.

“We’re working hard to give Amelia the very best quality of life we can. We are working really closely with the epilepsy team, who have told us it’s very likely she will never be seizurefree, and she is currently on three different medications but still has seizures every day.

“Currently, we’re waiting for an appointment with a dietician to discuss whether Amelia will be suitable for the ketogenic diet potentially, that could help with regulating her seizures and may also help with her learning disabilities through giving more focus.

“It sounds amazing, but we need to see if she

is a suitable candidate. We’ve been on the waiting list for about 18 months now, so we hope to be seen soon - I’ve already started looking at recipes and practicing cooking for a ketogenic diet, and it would really give us a boost if we could give that a try for Amelia.”

Taking on the London Marathon - again!

“Amelia absolutely loves her school, Lansbury Bridge School in St Helens, and although the past year has been very difficult for her with increasing seizures and medication changes, and she has regressed with her learning, they have been amazing.

“There are many children at the school with a range of different disabilities and conditions, and the teachers and teaching assistants do such a great job to support them all. The play equipment they have there is brilliant but costs so much money, which gave me the idea to fundraise for them.

“I completed the virtual London Marathon last year to raise money for The Walton Centre, who saved my life, and The Brain Charity, whose support was fantastic after my brain tumour. I couldn’t walk after my surgery back in 2015, but after running the entire 26.2 mile distance remotely on a route I’d devised around Liverpool, I raised over £1,800.

“Now, I am raising money for the school’s charity, Lansbury Make It Happen, to help Amelia and her friends. Amelia will be at that school for the whole of her time in education and she loves it there, so I want to do what I can to help them continue to support her and the other children there, as well as the teaching staff.

“The school community are incredibly supportive and along with each donation, I’m asking the donor to nominate a health condition they’d like me to shine a light on through my fundraising page - to date, we’ve had conditions including pulmonary hypertension, migraine, Amelia’s KCNB1, and others.

“It’s really important to me that people understand these conditions and their impact on the individual and their family, and learn about the reality of what they deal with.

“I completed the London Marathon in seven hours 15 minutes last year, but my goal this time is to do it in under seven hours.

I’m training for it and am determined to do my best, inspired by the knowledge that my fundraising will help Amelia and other children who have additional needs and disabilities.”

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SPONSORED

Tracheostomy care for adults with complex needs While undergoing a tracheostomy can be a traumatic process, living a fulfilling and independent lifestyle afterwards is easily achievable with the right support from expert clinicians.

And getting the right specialist support can ensure a person lives a fulfilling life, both physically and psychologically.

Exemplar Health Care currently has over 30 adults across its homes who have a tracheostomy or other respiratory requirements, and is a specialist in providing the care and support they need.

With 20 years’ experience of caring for some of the most complex and acute individuals, Exemplar Health Care supports people who may otherwise be in a hospital setting if not living in their homes.

Across its growing portfolio of homes, its teams are highly trained, and its homes adequately equipped, to safely care for people with tracheostomies and other complex respiratory requirements.

Here, Sharon Jolley, clinical specialist nurse - respiratory support at Exemplar Health Care, discusses its capability in tracheostomy care and how it supports people through the process and towards recovery.

Delivering specialist care from the point of referral At Exemplar Health Care, we support adults who require long or short-term tracheostomies, and work with them to achieve their individual goals.

Our expert clinicians, who have experience and expertise in delivering tracheostomy care, focus on assisting individuals to live a fulfilling and happy life, despite the challenges their tracheostomy brings.

We support people with different types and

"We support adults who require long or short-term tracheostomies, and work with them to achieve their individual goals."

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makes of tracheostomies, including cuffed and un-cuffed, fenestrated, non-fenestrated, and subglottic tubes to help to support with the management of excess secretions whilst maintaining a safe airway We also have the expertise to support people who require mechanical and manual cough assist, adhering to their personalised regime, and also those that require continuous positive airway pressure (CPAP) and bi-level positive airway pressure (BIPAP).

From the first point referral, we take a personcentred approach to tracheostomy and respiratory care.

Our clinical assessors work with individuals and professionals to understand their care needs prior to admission, and develop a personalised care plan to ensure their safety.

When someone moves into one of our care homes, we take the time to get to know them, and carry out an in-depth assessment to understand their holistic care needs, including their communication needs.

We work with each individual to identify which communication strategy is right for them and identify their aims and goals for their future life.

We also work closely with other members of the multi-disciplinary team such as speech and language therapists, respiratory physiotherapists and assisted technology specialists, to enable people to have the best opportunity to fulfil their communication needs.

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Specialist staff giving bespoke support Our homes are led by an experienced nurse-led management team, and supported by a trained in-house team of registered nurses and health care assistants.

Each of our homes has a high ratio of registered nurses and health care assistants, which enables us to provide attentive care and minimise the risk of, and respond to, complications which may arise from people’s complex respiratory needs.

Our health care assistants and nurses are trained to complete daily tracheostomy care such as cleaning the stoma site, changing tapes and dressing, changing inner tubes as per individual protocols, tracheal suction techniques and ensuring that the correct Heat and Moisture Exchange (HME) is used, including mechanical HME. They regularly monitor basic vital signs, including temperature, heart rate and oxygen saturations, and are able to detect early warning signs of infection and respond appropriately.

Colleagues are trained in emergency care and follow the National Tracheostomy Safety Project emergency protocol, alongside individual emergency protocols issued by the Respiratory Teams that manage service user care as outpatients.

Our teams are also experienced in the use of Passy Muir Valves (PMV) for those that use them, and Invasive Ventilation (IV) for those who require invasive respiratory support from a ventilator, both short and long term.

We have an in-house competency process to train and validate our nurses to complete full tracheostomy change, either routine or in an emergency.

This ensures that our care is proactive and dynamic, which reduces the need for hospital admission.

"Our life skills teams support people to adapt to life with a tracheostomy and respiratory needs, so they can continue to live a full and fulfilling life in the way they choose."

In-house teams of skilled professionals Many of our homes have in-house physiotherapists who can carry out respiratory assessments, and advise on suction techniques, patient positioning and optimal respiratory therapy.

Our life skills teams support people to adapt to life with a tracheostomy and respiratory needs, so they can continue to live a full and fulfilling life in the way they choose.

We’ve also facilitated training for family and friends to enable those with a tracheostomy or complex respiratory needs to maintain their connections and activities outside of the home.

Our in-house clinical experts deliver bespoke training to ensure that colleagues are confident and competent to understand people’s needs, and deliver safe tracheostomy and respiratory care, including with those who display behaviours of concern.

We tailor training to the needs of our service users, and colleagues are empowered to develop personalised plans for addressing behaviours of concern.

We review training and competencies regularly to ensure that colleagues are up-to-date with their knowledge and skills.

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SPONSORED

Dealing with boundaries when working in a private home Cecily Lalloo, managing director of Embrace HR, assesses the importance of establishing professional boundaries and why they must be put in place 48

Professional Boundaries The quality of a support worker’s relationship with their client is very important. It is essential to create a warm, kind, homely and friendly environment. Sometimes, however, this closeness can blur professional boundaries and cause misunderstandings and difficulties for the support worker and the parents of the young people in their care.

Many of our clients are young children and parents and family are the first point of contact on a daily basis with the support worker. It is really important that both the support worker and the parents work together to understand their roles, their limits and the employer’s policies.

Professional boundaries are the rules and limits that prevent the lines between the support worker and the client from becoming blurred. These boundaries are there to help maintain a safe working environment.

It is important to set boundaries from the outset. Where parents are acting on behalf of the young person (the employer) they often

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Examples of boundaries It can be a tricky balance to know how much personal information to share with an employee. It is acceptable to talk generally about family and personal life if it helps to build a relationship with the support worker and vice versa.

Here is a non-exhaustive list of potential issues that can cross boundaries: > Not respecting the each other’s privacy; > Visiting outside of contracted working hours without an invitation; > Buying, selling or lending personal items or money; > Discussing personal issues at length; > Postings on personal Facebook or other personal social media outlets without explicit consent; > Accepting or giving gifts other than at special occasions such as Christmas or birthdays (gifts should be of a nominal value); > Treating each other with respect and without favouritism.

assume the role of informal team leader, and therefore need to draw the line between what is appropriate and what is not. There is a fine balance between being a supportive employer and having a personal affiliation between both employees and family members. It can be difficult differentiating between being a worker and being a friend.

Managing Boundaries The key to managing many of these boundaries is understanding the difference between a professional and a personal relationship and ensuring that behaviour always remains on the right side of the line.

Professional relationships are time bound.

Employees have a distinct role and purpose with some structure. The professional has a responsibility for the welfare of their client, and those family around them, and there are rules and boundaries that guide the relationship such as their contract, job description and care plans. Support workers are paid workers and not friends, although friendships can blossom, but when dealing with work issues, friendships

need to take second place. Relationships need to be professional not personal.

Once a relationship has been allowed to stray into personal areas, it is much harder to maintain other professional boundaries.

When a parent, on behalf of the employer, then does behave in a professional manner, employees may be surprised, unhappy and resentful as they could have been expecting a personal response.

Boundaries are there to help maintain a safe working environment.

It is important to set boundaries from the outset

Communication It is challenging to find where that boundary should be, especially where the line may already have been breached. But, with open communication about how parents want boundaries to work in the family home, and with support from deputy’s offices, case managers, and HR advisers, the right professional boundaries can promote much healthier relationships that are respectful, safe and meaningful.

If you would like to discuss this subject further, please contact Cecily Lalloo at Embrace HR Limited.

T: 01296 761288 or contact us here.

If you would like to receive our newsletter, please sign up here.

Based in Aylesbury, Buckinghamshire, Embrace HR Limited provide a specialised HR service to the care sector, and small businesses, from recruitment through to exit.

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Nick Godwin, principal l aw ye r a t S l a te r a n d G o rd o n a n d c h a i r o f t h e S i l v e r Tr a u m a Conference, previews why the event is shedding much-needed light on a vital topic

It’s a real pleasure and an honour to be chairing the upcoming Silver Trauma conference in September, hosted by Slater and Gordon and STEPS Rehabilitation.

Whilst the topic of ‘Silver Trauma’ is not one that has attracted substantial focus previously, the older population in the UK now makes up a significant percentage of admissions into trauma units across the country, once largely the domain of adult males.

The Silver Trauma conference will aim to highlight this growing area of medicine and clinical practice and the particular key legal issues that arise when older people sustain a serious injury.

Trauma rates in this age group have been increasing for some years and the over 65’s now account for over 50 per cent of hospital trauma admissions. Until relatively recently a typical trauma patient would be a young man; now, because of the UK’s shifting demographics, trauma patients are much more likely to come from the more elderly population.

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Putting Silver Tr a u m a on the agenda

The conference speakers will be exploring the topic of Silver Trauma from various different angles, including clinical, rehabilitation and legal viewpoints. They will be discussing the key issues faced by this group and how those issues subsequently impact upon clinical decision-making, rehabilitation and recovery potential following major trauma.

Ensuring people are not discriminated against because of their age is crucial and we will explore the fundamental decision-making processes and gain a clearer insight into them.

As the UK population ages, with many older adults remaining fit, healthy and independent for many years, we will look at today’s viewpoints and consider if the current approaches properly address the particular needs of this group.

This conference will be of interest to anyone working with older adults who have been seriously injured and the topics covered will be of relevance to anyone working with retired people, particularly the over 50’s.

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Silver lver Silver Trauma rauma Trauma

legal l and legal issues Clinical issues forand older for legal older people issues people for older people ffered ve suffered who major have major injury suffered injury major injury

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22nd September 2022 One Great George Street Westminster London

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Draft Programme 09:00 - 09:30

Registration, tea/coffee, exhibition stands & networking

09:30 - 09:35

Welcome from the conference Chair

09:35 – 10:15

The Older Major Trauma Patient - Characteristics, acute care pathways and outcomes Professor Fiona Lecky, Clinical Professor in Emergency Medicine, CURE

10:15 – 10:55

Barriers to progress: The importance of a holistic approach and thinking outside the box There are often many reasons why patients struggle to tolerate rehabilitation and reach their potential after a traumatic injury; and they are not always obvious. This lecture will discuss the importance of taking a comprehensive history, and using case histories will demonstrate how small changes in multiple areas can really make a difference to the outcome and quality of life of those persons and their families following ‘Silver Trauma’.

Dr Elizabeth Iveson, Consultant Stroke and Neurorehabilitation Physician, STEPS Rehabilitation & Nuffield Hospital York

10:55 -11:25

Tea/coffee, exhibition stands & networking

11:25 – 12:00

Traumatic brain and spinal cord injury in older people: Implications for intensive care This presentation aims to cover the acute management of both conditions, but with a particular focus on prognostication.

Dr Matt Wiles, Consultant Anaesthetist, Sheffield Teaching Hospitals NHS Foundation Trust

12:00 – 12:35

Public Law issues surrounding older patients who sustain serious injuries Alex Rook, Partner, Rook Irwin Sweeney

12:35 – 13:00

Unique nutritional considerations for rehab and recovery in aged 60 + trauma patients What are the top 10 nutrition-related factors which influence rehab outcomes in the aged 60+ target population. This session will also address how to screen clients for malnutrition (and other nutritionrelated concerns) and when to refer to a dietitian.

Sheri Taylor, Director & Specialist Rehab Dietitian, Specialist Nutrition Rehab

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22nd September 2022

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One Great George Street Westminster London

13:00 - 14:00

Lunch, exhibition stands & networking

14:00 – 14:30

Legal Issues: Why does age matter?

Kate will be exploring why age matters when it comes to advising Claimants on a variety of legal issues, which arise during serious injury personal injury litigation.

Kate Nicklin, Principal Lawyer, Slater and Gordon

14:30 – 15:10

Presentation title TBC Dr Ruth Kent, Consultant & Senior Lecturer in Neurological Rehabilitation at Mid Yorks NHS Trust and University of Leeds

15:10-15:35

Tea/coffee, exhibition stands & networking

15:35 – 16:00

When sleep ceases to be golden- sleep in the silver-haired Sleep changes as we age and with it the protection against, and recovery from, physical and mental challenges. Sleep invariably becomes lighter, broken and less refreshing as we leave middle age, in what is a biologically driven change in sleep processes. This has a range of effects including an increase in the disparity between male and female sleep. However this change is exacerbated by lack of knowledge about, or motivation to engage with, the lifestyle changes which would enable us to maximise what physiological ageing leaves in its wake. Against this background the sleep problems that almost inevitably follow traumatic injury become even more acute, with the potential of still more chronic consequences when that trauma occurs or persists in those beyond middle age. This talk will provide a background to age-related sleep changes and identify paths that might lead to better sleep.

John A Groeger, Professor of Psychology, Nottingham Trent University

16:00 – 16:30

Rehabilitation of the older spinal cord injured individual with special reference to Central Cord Syndrome Pradeep Thumbikat, Honorary Senior Lecturer, Sheffield University

16:30 – 17:00

Silver Trauma – The STEPS spinal injury pathway Exploring best practice in rehabilitation methodology to maximise recovery for the elderly following a traumatic injury. From early goal setting to accessing the latest in robotic and exoskeleton technology, this session draws on real-life case studies to demonstrate how intensive interdisciplinary rehabilitation can dramatically improve client outcomes.

Jamie Storey, Specialist Senior Physiotherapist & Lucy Greensmith, Senior Occupational Therapist, STEPS Rehabilitation

17:00

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The importance of Independent Living Trials in the rehabilitation process Independent Living Trials (ILT) referrals always elicit excitement in the BIS office, favoured by the team who revel in the setting up of a new chapter of a clients rehabilitation and recovery.

Perhaps it’s the prospect of the data collection, the buzz around finding a new home for a client, but mainly, it’s the opportunity for further growth for the client in question; the next phase in their journey.

They are not without their challenges of course, and over the years the definition of success has become more varied and complex. So why do clients engage in them, and what do they actually look like.

ILTs come in all shapes and sizes, like everything in neuro rehabilitation, they must be client specific and meet the needs of their wider community.

Natalie Mackenzie, director of BIS Services, explores the role of Independent Living Trials in a client’s journey, what success might look like, and what challenges potentially await for client and MDT alike

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The rationale ILTs often signify a shift in rehabilitation, with the focus moving from being supported to being support facilitating further improved function, moving away from the family unit or another rehab setting.

It’s a big step. Families can often be reluctant, safe in the knowledge that their loved ones are always with them and secure, and fearful of what lies outside of this. Will their loved one be safe, will they be lonely, will they be unhappy?

Conversely, it is the need to preserve the family unit that ILTs are progressed. This is often the case when the client has moved back into the family home post injury, having previously left the nest. Dynamics change, roles change, the environment can be more challenging. ILTs can restore the previous status quo, allowing a bridge back to pre injury life.

This is something that has to be handled sensitively and the key here is a cracking MDT with an experienced Neuropsychologist to aid in the navigation, and of course the right timing.

The planning It is music to our ears when we are in an MDT and the team begin discussing the potential for an ILT in four to six months; time to source property, time to gather baselines, and time to prepare the team.

Whilst still music, the calls which begin with “there’s been a change in circumstances, we need an ILT in 4 weeks” isn’t always as in tune! Teams need to be assembled (Marvel style sometimes), MDT schedules need to be accounted for, with each key therapist in place prior to the placement and vocational or educational schedules need to be factored in.

Another part of the planning is the gradual introduction into full time trial, so often they can fall apart if the team have not factored in this important element, both to allow the client adjustment time to their new schedule and environment, but also to ease the concerns of the family. This graduated approach needs to be longer than might initially be anticipated.

Of course, from a costing perspective the team need to be retained during this period of flexibility.

Ideally, current RAs will move into the ILT. Ideally, but it isn’t always possible. Other conflicting client schedules, study commitments and so on may hamper that nice shift. We also often have to consider that some of the current RAs skills and task focus with the client may not be the right fit for an ILT.

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A large team of skilled rehab assistants is needed, for the obvious reasons of scheduling and cover, holidays and sickness, but also for peer support and to avoid burnout. ILTs are tough. The team are observing everything, all the time. Training for an ILT is slightly different, with a focus on graded exposure, tapering, observation, feedback to aid insight and metacognitive skills, motivating, prompting, sleep hygiene, mood, fluctuations, client sickness, impact of friends and family. And more. Multi agency working brings even more challenges, to ensure everyone is providing a consistent, holistic and empowering approach.

It doesn’t always work out that way, so communication is key, constantly.

ILTs may also start out as a six-month plan, end early or extend much longer. Success can be dependent on the retention of staff and/or their ability to extend past the planned timeframe, which can be a task with high calibre staff.

The challenges One may assume that the clients want to progress to more independence, a step closer to achieving their goals, a step closer to more autonomy and a step further away from acute settings. But it’s not always this simple.

The post-injury effects on mood, anxiety, motivation and so on often ramp themselves up at this juncture. We expect it, we plan for it.

But the clients often don’t know it’s coming.

This anxiety, this step into the new, potentially unknown can often hit them sideways. Not often exhibited through straightforward “No” or “I don’t really want to”, the team is met with subtle resistance. The worktops aren’t the right colour, the garden isn’t South facing, the bus stop is too far.

If you have tried to source a rental property in the past two years, you will know all too well what a rarity the perfect place is. Hard to explain that to our clients. The search can go on for what seems an eternity, and that’s even before we get to the part of explaining the up front payments to the landlord or their

agent. The furrowed brows that the boxes aren’t being ticked as expected for annual earnings or guarantors. Some simply just say no, too complicated. And you can bet your bottom dollar that no is on the house with the correct garden, worktop and a bus stop 2 minutes away.

Recently, a large consideration has been the use of substances and alcohol when embarking on an ILT. Behavioural management plans, empowerment-based approaches are key here, but clients often fear what happens away from the less rigid ‘rules’ of home life. It can be a Hoover damsized barrier, and once again, a large amount of client specific flexibility is called for, just to get them through the door.

Then of course, what happens a few weeks down the line when autonomy increases, and plans begin to be pushed back against?

More adjustment, more flexibility, whilst still maintaining focus on the job at hand- increased independence.

It is not straight road, that is for sure. I often allude to these trials as being akin to the Milton Keynes roundabout fest, lots of twists and turns, a number of missed exits but a general move in the right direction. The impact of substances on the success of an ILT is a big topic, and one we will revisit again.

Periods of challenge can simply happen during the summer months, when therapists are on leave, educational or support placements are on breaks, which brings a change in routine that needs to take place, but with not enough time to gradually change, and even less to taper off.

You can bet that bottom dollar (if you still have it from the first bet), that most problems will rise their head. Changes to routine and structure have a big impact.

Let’s not also forget to address the potential feeling of freedom that the client can misinterpret and perceive as a period of “recreation”, shall we say. Also exhibited in sudden party invites, a sudden influx of “visitors” and potentially a slightly increased alcohol consumption, akin to the turning 18 behaviour some of us may recall.

The loss of an RA for one reason or another adds further challenges. This can be due to them moving onto another role, sometimes because the amount of time spent between client and RA is too much and both need a break.

Sometimes, because the relationship has broken down irreparably, often due to a difference or opinion, it can be as simple as that. I think we can all agree that the rigidity of some clients can be a hard mountain to overcome. The client (and sometimes the team) underestimates the intensity of these placements, and if not adequately prepared for can prove the straw that breaks the camels back.We must all expect it and have contingencies, but this takes time, starting from scratch sometimes without impacting the ILT and the needs of the clients. From a costings perspective such inevitable changes must be budgeted for.

How do we define success?

Generally speaking an ILT is embarked upon not with the overall goal of the client living fully independently, but to determine if they actually can. Their determination of if they want to do it is also a key factor.

Success may not mean a client lives independently. Sometimes success is actually quite the opposite. Having left the less rigid but more subtly scaffolded home or rehab environment, clients may find great success in increasing their insight about what support they actually do need, what prompts they require.

Their metacognitive skill improvement is often the most sought-after outcome, whether this is coupled with a reduction in support or even an increase.

Success is also measured by the level of collaboration and communication within an important inter disciplinary team, who embark from the outset on a client centred, empowered approach, who are experienced in positive risk taking, reflective practices and overall expectant of the challenges that a complex period of rehabilitation such as an ILT brings.

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INSIGHT

D r A n d r ew N i c o l s o n , m e d i c a l d i r e c to r o f T h e Wa l to n C e n t r e - t h e U K’s o n l y s p e c i a l i s t h o s p i t a l t r u s t d e d i c a te d to p r ov i d i n g c o m p r e h e n s i ve n e u r o l o g y, n e u r o s u r g e r y, s p i n a l a n d p a i n m a n a g e m e n t s e r v i c e s d i s c u s s e s i t s p i o n e e r i n g wo r k

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INSIGHT

The Walton Centre a beacon in neuroscience Over the hospital’s lifetime of 80 years, The Walton Centre has grown from a single neuroscience unit to a unique specialist NHS Foundation Trust, serving millions of people across the UK. I have been medical director here for six years and even in this time it has grown and enhanced the service it provides to not only patients in Cheshire and Merseyside, North Wales and the Isle of Man, but also to parts of the rest of the north of England and beyond.

In recent history, the Trust has become the sole provider of spinal services in Cheshire and Merseyside, continues to host the rehabilitation network for the region and launched the first 24hour thrombectomy service for stroke patients in the North West.

I firmly believe that the Trust will continue to grow, innovate and enhance the many services it provides.

It would be remiss of me not to mention how the COVID-19 pandemic impacted what we do here at The Walton Centre.

Like all hospitals across the country, we had to adapt. We provided mutual aid support for the acute hospitals around us in Liverpool, so patients could get the most appropriate, specialist care at the right time in the safest way possible while the region’s general hospitals dealt with hundreds of COVID-19 cases.

Our staff – clinical and non-clinical – did everything they could to support patients and each other during this extraordinary time. This continues, with some our practices changed, and in many cases enhanced, by the experiences of COVID-19.

I’m proud of how staff worked in the very challenging situation and found innovative ways to continue to provide the very best clinical services. Those innovations included quickly bringing in video consultations, something we are continuing where appropriate, and also our development of the Rapid Access Neurology Assessment (RANA) programme.

The aim of RANA is to ensure that a patient presenting with an acute neurological problem is assessed as quickly as possible by a specialist and appropriately investigated.

This is a service open to all of our local Emergency Departments who previously may have admitted such patients for assessment.

We would therefore anticipate not only a better patient experience but a reduction in local hospital admissions and investigations, and so is a more efficient use of healthcare resources. So far, 273 patients have been referred through the RANA pathway since it was implemented last year.

The pandemic also made us in the executive team reflect on the future of The Walton Centre, and the importance of providing the care patients need in the right way, and at the right time.

Our new three-year strategy outlines key ambitions and drivers, such as education, leadership, research, innovation, collaboration and social responsibility, which will ensure the high level of care we provide will continue to grow and evolve.

Already this new direction has inspired staff to pursue new ways of treating patients with neurological conditions.

At the end of 2021 we won a bid to provide MRI guided ultrasound thalamotomy to patients with Essential Tremor in the North of England. Essential tremor causes uncontrollable shaking and is usually treated with medication, or in severe cases Deep Brain Stimulation (DBS).

We treated our first patient in March this year and the results were incredible. It also drastically reduces the amount of time patients need to spend in hospital when compared to other more invasive solutions, such DBS. This new treatment, which targets focused ultrasound onto the areas of the brain causing the tremors, is minimally invasive and completed in a few hours.

We are one of only two centres in the UK to offer this groundbreaking treatment, and I’m excited to see how this will benefit patients with this and other conditions.

In spinal surgery, we have introduced endoscopic techniques that will mean more precision, quicker recovery and therefore shorter stays in hospital.

The technology in this area is very exciting, and shortly we will be one of the first centres in the UK to offer the advanced techniques and improved precision available with robotic spinal surgery.

It’s a testament to staff here at The Walton Centre and their dedication to pursuing these new, innovative ways of delivering outstanding care for our patients.

Finally, when I think of the future of neuroscience and the direction we are taking I can’t help but be enthusiastic about what we’re doing here at The Walton Centre.

Our staff are constantly encouraged to look at the services they provide, and seek to innovate and improve further our already outstanding patient care.

"Over the hospital’s lifetime of 80 years, The Walton Centre has grown from a single neuroscience unit to a unique specialist NHS Foundation Trust, serving millions of people across the UK" 57

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" The better we understand, the better we can support everybodyour team, our patients and our friends (partners in care)."

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That sentiment is at the heart of pioneering research into Huntington’s Disease (HD) care, which explores the experiences of healthcare assistants and registered nurses - those delivering frontline care - and the relationships they build with people living with HD and their families in an inpatient setting.

Huntington’s Disease (HD) is a relatively rare hereditary progressive neurodegenerative condition. Its onset is most common in middle age, and its effects are wide-ranging, changing how people think, feel, speak, move, swallow, and eat, which can often require professional care.

Whilst research is underway across the world, there remains no cure at present and the profile and understanding of HD in wider society leaves room for improvement.

There is, however, much that can be done to support the person to live well with HD. By interviewing a number of healthcare assistants and registered nurses working with people with Huntington’s Disease, Dr Vincent Harding, Forensic and Clinical Psychologist at St Andrew’s Healthcare has gained unparalleled insight into the experience of relationships with people with HD and their families.

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This process has helped our staff to feel heard and validated, for them to share their experiences without fear or judgement

Here, Dr Harding discusses how this helps St Andrew’s to improve experiences and outcomes for all.

Research found that the experiences of staff supporting people with HD, particularly in inpatient settings had not been explored.

St Andrew’s, a specialist provider of HD care identified the need to assess the psychosocial impact of working in such an environment, to gain improved insight into lived experiences of working with people with HD and their families.

“This process has helped our staff to feel heard and validated, for them to share their experiences without fear or judgement,” says Dr Harding.

“It really provided that space for them to reflect on what it's like to work with people with HD, and their families, and what thoughts and feelings that can evoke for them.

“And for us as a team, and as a service, we then have a better understanding about those things. This enables us to better support our staff, our patients, and their partners in care.”

The research revealed two overarching themes from the healthcare assistants and nurses involved in the study at the specialist HD

service in Northampton, which is home to patients from across the country.

W h a t i t t a ke s to wo r k with people with HD Getting to know the person behind the diagnosis was a key factor, says Dr Harding.

“What was really evident was the importance of seeing beyond the label, thinking about the person first and foremost, and the diagnosis second,” he says.

“As one of the people I interviewed put it, ‘Their illness isn’t who they are. If you put the HD aside, you’re actually able to get to know them’.

“It was about trying to move away from a focus on the condition alone, and understanding the person. Understanding what they like, what they dislike, what they want, what they need, what their preferences are, and really doing everything we can in terms of person-centred care.

“By getting to understand the person and what’s important to them, we are able to meet them where they’re at.”

Approaches to support was another key theme.

“It was apparent that enabling people to feel safe was very important, safety and trust is a massive thing, and the creation of a homely

Person-centred care is at the heart of this, and our team spoke of how the more you understand the person, the better level of care and overall experience they have

environment in order to meet the person’s psychological needs,” says Dr Harding.

“It is about using every opportunity that presents itself and seeing everything you do as an intervention.

“So if you're supporting somebody and getting them a drink, or you're supporting them with personal care, it's about making that a person-centred intervention, where you're factoring in the person's likes, their wants, their needs, and tailoring your intervention accordingly for them.

“We have quotes from staff which speak of their desire for people to feel safe around them, and about how every bit of time they have they want to spend with the patients, to help them feel safe and build that trust.”

The determination and perseverance that is needed in caring for HD patients was another salient point.

“Person-centred care is at the heart of this, and our team spoke of how the more you understand the person, the better level of care and overall experience they have,” says Dr Harding.

“One of our team spoke about how ‘the next minute is a new minute, the next day is a new day, and you just carry on’. That really spoke to the need for resilience and the ability to repair any ruptures that might occur within relationships, particularly in the context of behaviours that challenge.

“But it became very apparent how our team think about the person behind the diagnosis and how they can support them at this time - taking each minute, each day, as a new moment.”

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The emotional experiences of working with people with HD The role the staff play in the lives of patients was keenly felt, says Dr Harding.

“As one participant said, ‘We're friends, we're family, we're nurses, we're everything to them’. And I think that shows how deeply we are committed to creating this trusting environment for people,” he says.

“Some families are quite heavily involved in that person's care, and some less so - that might be because of physical distance and geography, or it might be because of the hereditary nature of HD, which can affect families in different ways, whether or not they have a diagnosis themselves.

“And I think partly because of that, this setting is very different to many other inpatient settings. In our HD care, it’s much more holistic.

“To patients, they might see us as ‘family’ because they're living with us 24 hours a day, seven days a week.

“One of our team spoke about how it’s important to give professional support, but friendly support. They spoke of how they are aware they are ‘someone to confide in, someone to share your problems with, [seeing] them at their worst and at their best’ - that is a hugely important role to play in someone’s life.”

The research also revealed the fear and sadness that can be experienced within the team.

“There were different emotions elicited during the interviews, including fear and sadness,” says Dr Harding.

“Many of the participants I spoke to admitted they'd had preconceived ideas about what it might be like to work in an HD setting, they often spoke about being scared beforehand or anxious about working with people with HD. “But once you've met one person with HD, you’ve met just ONE person with HD. What you read in the textbooks doesn't necessarily fit with what you're presented with on the ward.

“One of the participants said, ‘It’s very sad, but at the same time, it's very fulfilling’. And I think in lots of cases, people's expectations didn't necessarily meet their reality.

“There was that sadness, there was that fear, but that often changed over time.

As one participant said, ‘We're friends, we're family, we're nurses, we're everything to them’.

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Outcomes The greater understanding of the psychosocial experiences and feelings within the team is enabling St Andrew’s to build on the support they already provide.

“I think it's really about doing more of what we've already been doing,” says Dr Harding.

“For our healthcare assistants and nurses, it’s about providing spaces for them to be able to reflect on their experiences and learn from them. As a psychologist, that is a big part of my role to provide regular opportunities for the whole ward team for reflective practice. It’s important we all, individually and collectively, think about what we can do more of or differently.

“By doing this, we can improve outcomes and experiences for the patient and their families and friends.

“When families and friends are involved, we work with them as equal partners in care. We

work closely with them, on their terms, actively seeking their views and working together to improve outcomes and experiences for them, their relative or friend, and the clinical teams.

“I think this research can only help our ability to create these partnerships in care.

Through gaining this rich qualitative information, we are expanding the evidence base, which will give new levels of insight to others working at St Andrew’s.”

Dr Harding’s research has been shared internally within St Andrew’s, with a view to being published in a peer-reviewed journal.

“While this has been used to good effect in-house, I think it would be helpful to publish this more widely to help others in similar settings to consider their clinical practice, their ways of working, and their experiences,” says Dr Harding.

“There is further need to replicate this research

in community HD care settings, and to consider the voices of other allied healthcare professionals.

“We could also look to extend the research to speak with the person with the diagnosis themselves, when they come into a setting like St Andrew’s, and the experience of family members when that happens.

“The work I completed was a time-limited piece of research, but something that might be helpful in the future is to consider a longitudinal study which explores the dynamic nature of relationships over time and how these might change.

“They are some of the research avenues I’d like to pursue in time, working with colleagues here, to further expand the research and evidence base in relation to HD.” To find out more about specialist HD care at St Andrew’s please visit: stah.org/HD

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INSIGHT

Fuelling the growth of neuromodulation A recruitment business specialising in the fastgrowing field of neuromodulation continues to support the growth of the sector by sourcing expertise globally to take businesses working within it to the next level.

Hanison Green, marking its second anniversary this month, works with a number of key names globally in the high-tech industry, finding talent to fill strategic roles, thus helping them to unlock the next phase of growth.

The growth of neuromodulation continues at a rapid pace, with new ventures being created worldwide to tap into the scientific research-led tech phenomenon which uses electrical nerve stimulation to achieve life-changing results for patients living with conditions including spinal cord injury, OAB, and chronic pain.

Working primarily with startups in the United States and Europe, London-based Hanison Green - established to ‘do recruitment differently’ and place top-level neuromodulation leadership in early-stage companies at a crucial stage of their development - continues to add new businesses to its client portfolio, in addition to major clients already being works with in the sector such as ONWARD. “We’ve seen great progress over the past two years, both for neuromodulation as a sector and for Hanison Green,” says Lindsay Hartland, founder and CEO of the business, who was previously a partner at global recruiter SThree.

“I’m really happy with what we’ve done, but mainly the way that we’ve done it. We’re incredibly customer led. We invest a lot of time into working with our candidates, as well as the client, and I’m really pleased we’re able to often exceed the expectations of our customers.”

Despite having only been in business for two

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years, Lindsay has noted significant growth within the neuromodulation field globally during that time, but particularly in the United States.

“We’re currently tracking the progress of around 350 neuromodulation startups, but we haven’t found them all yet, in fact around three or four new ones are coming onto my radar each week,” he says.

“It’s a very exciting space of MedTech for companies and investors to operate in, and we’re seeing a real surge in activity currently, due to the continued advancement of scientific research, and clinical evidence, with major breakthroughs happening frequently now, but also because it’s becoming more widely accessible, as the FDA continues to clear more devices, and awareness of neuromodulation therapies continues to increase.”

The increase in pace of development, can

in some way be attributed to COVID-19, says Lindsay, with the transition to telehealth and home-based therapy.

“It was heading in that direction anyway, but the recent pandemic has sped things up,” he says.

“Historically, neuromodulation generally was implantable devices to treat chronic pain, but now we’re seeing a plethora of pioneering therapies being given the regulatory green light, along with the move towards external, non-invasive or minimally invasive stimulation devices which patients can use, and be in control of, in their own home.

“Through this therapy being moved from clinic to home, it has contributed significantly to the growth and awareness of the whole concept of neuromodulation. We’re now starting to see a glimpse of the real potential of stimulation therapy, and the life-changing impact it can have over so many health issues. Our belief and expectation of what neuromodulation is capable of is evolving quickly.”

Hanison Green’s client base expands across the United States, and Europe, and while the business continues to grow, Lindsay says it will never seek to have huge numbers of clients.

“We don’t operate big numbers and certainly aren’t bombarding the market with loads of CVs. Our approach is very targeted. We attempt to match an excellent candidate exactly to a position or business within which we are confident that will be a great fit,” says Lindsay.

“Many recruiters will get hold of a half-decent

INSIGHT

"It’s a very exciting space of MedTech for companies and investors to operate in, and we’re seeing a real surge in activity currently"

candidate and mailshot their details to as many companies on their database as possible, hoping that something sticks. We haven’t done a single mailshot in two years. That’s the opposite of how we work.

“We get to know a candidate, and I mean really know them. We get under the skin of what makes them tick, and if we uncover a need that their current role doesn’t provide them, then we’ll aim to work with them exclusively.

We’ll cross reference them to our list of neuromodulation companies and link them to where we see a need and indeed a gap within that company. We’ll then make very pin-pointed, individual and personal approaches to the list, highlighting where we believe the candidate can add real value to this business. It’s strategic rather than scattergun.

“We’ve got a 100 per cent acceptance to offer rate, and for every three resumes we send to a brief we average over two interviews, which shows how well we understand the market, and our customers. We’re not interested in wasting anyone’s time.”

Included in its array of up-and-coming names in the sector is Massachusetts-based NeuroMetrix - traditionally a diagnostics business, now moving into the neuromodulation therapy space, for which Hanison Green found their commercial leader for its US launch - as well as ONWARD. While in 2020 the venture’s work was lesser know, it has since hit global headlines

through its STIMO-BRIDGE trial, which enabled three paralysed patients to regain the ability to walk, run and swim through its spinal cord stimulation technology. It is set to commercialise its first product, the ARC-EX external stimulation device, next year.

“We were only a few months in at Hanison Green and I managed to connect with Dave Marver (ONWARD CEO). The work they were doing was incredible, so I was really keen to speak with them,” says Lindsay.

“ONWARD have seen astronomical growth having doubled their headcount in the past two years, which has been great to see. We were fortunate to place their VP marketing, and subsequently their two senior marketing managers for the US and Europe and I still keep in regular touch with them, they’re doing amazing things and we’re very proud to to be able to call them a client of Hanison Green.”

Looking into year three and beyond - marking its official second anniversary on September 7, 2022 - Lindsay is committed to continuing to

do what the business does well and enjoy the work/life balance he sought in becoming an entrepreneur.

“Really, it’s more of the same going forward.

We do what we do very well and have made some great relationships, so it’s building further on that,” he says.

“I get to build relationships with some truly wonderful people through my work, and I also get to spend quality time with my kids, which was so important in doing this, and I’m very happy with my life right now. What more could you want?

“Looking forward, our ethos will be unchanged treat people well, and with respect, and do your best for them, and do what you say you’re going to. It’s that simple, really.

“Our expertise and interest lie in neuromodulation, and I don’t see the need to go outside of that, so that will be the space we continue to build our presence in.

“However, at some point we might look at braincomputer interface (BCI) - it’s sci fi, amazing stuff, and there are some wonderful companies working in that space, on the cusp on achieving something astonishing. Potentially we could move into that sector and support the growth of companies working in BCI at some point, but we’ll see how the sector goes - it’s still very early days.”

“But for the foreseeable, we’ll continue to support the ongoing growth and development of pioneering neuromodulation start-ups”

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SPONSORED

The Swanick-Chroma Intervention: Including the Adoptive Family in Therapy Without understanding, conflicts within the adoptive household can form and progressively worsen if not addressed. It is therefore important that children and parent(s) are included in the therapy setting, to work through any issues and support them in moving forward in a positive way.

In response to a clinical need for adoptive families who were referred to Chroma, Chroma developed the Swanick-Chroma Intervention – a unique creative arts therapy intervention for parents who need support in their attachment relationships.

Based on Lambert’s 1992 paper on the factors for effective therapy, alongside the therapeutic models of reflective functioning and mentalisation (Fonaghy, 2000), the intervention looks at the four areas to think about when providing good enough therapy. These included the relationships between therapist and client, the sense of hope for positive outcomes, the personal characteristics of the therapist and the mode of therapy.

Fonaghy’s theory of mentalisation supports the notion that when we can reflectively think about the feelings and thoughts of another person, we have a better sense of empathy and understanding, and this fosters a feeling of strengthened attachments.

As in the case of this mother and son. Mom was frustrated by her son’s behaviours – his overwhelming need for attention, talking and wanting to play music all day.

Following a referral to Chroma, her son began working with an art therapist and she undertook the five SCI sessions with a trained therapist.

Through talking with her therapist and using the SCI intervention, mom realised that her frustration was caused by their different attachment strategies: She liked to have her own space and her son needed someone with him to share his thoughts and feelings.

Her son used music as a way to connect with

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her - playing her favourite songs but because she was feeling stressed with her daily parenting responsibilities, she was taking this act of kindness as a defence.

When she started to practise the mentalisation techniques of imagining her son’s feelings, alongside exploring her own feelings of being close to someone, she realised the act of playing music was her son’s way of thinking about her and showing her how appreciative he was of her as a mother. This greatly helped the parent-child relationship and mom started to feel warmer feelings towards him.

When parents are struggling to understand their child, or to support challenging behaviours, it’s often because the stress of daily life has affected their ability to think about their child within the context of their whole life experiences. The use of the SCI can help families to re-think the way they react and act with their child in difficult situations, creating a deeper understanding of behaviours and a more attuned way to be together.

For more information on Chroma’s work go to www.wearechroma.com, call 0330 440 1838 or email: sayhello@wearechroma.com.

SPONSORED

How Chroma Music Therapists support people living with dementia to connect and express themselves Meg Dowling, an HCPC registered Music Therapist and Neurologic Music Therapist at Chroma, has been working with people living with dementia since 2017 and currently works within two residential care homes in the South West of England. Her approach is person centred, informed by psychodynamic thinking and often harnesses the power of active music making and improvision as the main therapeutic intervention methods during sessions.

When working to support the needs of people living dementia, Meg uses her Music Therapy sessions as a way to offer opportunities to connect, explore and reminisce - all of which can be effective in helping people to communicate and express themselves within the boundaries of a secure therapeutic relationship and a safe therapy space. This allows them the opportunity to share and explore things they remember or perhaps relive significant moments and, where pre-recorded music is incorporated within these interactions, might include listening to or singing meaningful songs from their childhood or adolescent years.

“It is important that all sessions are client-led, to treat them as a unique individual, to be alongside the person and to stay with them in the moment, to notice how they are presenting and where they are in the world. It’s important to acknowledge these things from the beginning in order to offer them the personalised support they deserve”, says Meg. “With this approach, I can support them in whatever way they choose to communicate, whether that be verbal, non-verbal or simply being calm and relaxed in their environment.

“Encouraging people living with dementia to reminisce can set into motion a process to help make connections between themselves and the therapist. Getting to know them through making connections and developing a therapeutic relationship can increase a feeling of safety and security for them and this important unique relationship supports the opportunity to ask them about, for example, their family, their likes and dislikes or their feelings, both in the past and the present time.”

Accessing and expressing emotions, thoughts and feelings can be more challenging for a person living with dementia, which can make issues like processing grief or loss much more difficult. Memories might get muddled, making it feel confusing and unsettling and, if we were to keep reminding them of that loss, they would have to cope with re-living those emotions.

“In instances such as these, which can be commonplace when supporting older adults within a care home environment, it is important to be sensitive to the time it might take for them to process loss and how this process might present itself. If the person does not want to talk about it, that is of course ok because I’m working in a person-centred way so I must pay attention and go at their pace, but it is about offering opportunities to explore those emotions through, for example, indirect channels such as musical exploration, song choices, genres, and the mood of the music. As a Music Therapist, I enable and support the expression and communication of emotions to happen in whatever way is appropriate for the person I’m working with, in that space and in that moment.

“The focus of my work within these two care homes is to offer people living with dementia the opportunity to interact, communicate and express themselves through meaningful connection in music, sound and a secure therapeutic relationship. Their weekly, one-to-one sessions aim to support them to process feelings of grief and loss and to help enhance their health and wellbeing.

“Staff in both homes have commented that sometimes the people they care for who attend Music Therapy seem calmer following each session, more relaxed and more settled. Other times, staff have noticed how they have become more chatty, more animated and more engaged in the social aspects of the home, as if there is something within the experience of Music Therapy that inspires and motivates them to communicate and connect with people around them.”

“Every week, personalised Music Therapy sessions offer the people I work with an opportunity to express themselves and share experiences in a safe supported space, with someone who is truly listening and who will respond to them and their needs in a sensitive, meaningful way.

“Human interaction and communication is inherently musical by nature, so offering meaningful musical connection at all stages of life is vital. This enables us to support people’s social, emotional, mental health, well-being and development, in a creative, accessible, relational way, which is especially important for the people in our homes and communities, our neighbours, friends and loved ones, who are living with dementia.”

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STROKE

After experiencing stroke, Lisa Beaumont refused to let it defeat her - and her formidable attitude has seen her rebuild her life and continue to achieve huge goals along the way, inspiring others to see how it is possible to thrive after such life-changing illness.

‘Recovery is a journey you must keep going’ NR Times learns more about Lisa and her work as a marketing entrepreneur, leading digital advisor, passionate supporter of fellow survivors, and mother who will never give up on her ongoing neuro-rehab journey Eleven years on from Lisa Beaumont having the two strokes which devastated the life she knew and loved, she continues to experience the journey that is recovery, with highs and lows along the way.

Having spent more than year in hospital after her life-changing brain haemorrhage in 2011 - which left her as Glasgow Coma Scale (GCS) 3 and having to re-learn to walk after being left paralysed down her left side - Lisa has recently encountered another hurdle in her journey, where she lost her mobility and was confined to her bedroom for weeks on end.

But never one to let a setback defeat her, Lisa has continued her rehabilitation with determination, overcoming the searing pain and ulcer caused by problems with her orthotic to regain the ability to walk and enjoy the pleasure of being outside in the summer sunshine.

“It has been a huge setback. Not only could I not walk over to my desk in my bedroom, I couldn’t walk downstairs, I couldn’t go outside. I could only see the lovely weather from my window,” says Lisa, now 54.

“I’ve had 11 years where I have been fixated by wanting to walk. It has been ridiculously distressing that I can’t walk and continue with my physio regime, and the daily walk up and down our garden path to improve my walking ability.

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“But to help me through this, I have been going back to my thought processes from the beginning. I’ve always believed you must always focus on what you can do, and not on what you can’t do.

“Although I had a period where I was not able to walk, I could do bed exercises. I did more and more bed exercises to try and keep up with my fitness. I did what I could do, rather than focus on what I couldn’t.

“I also remembered that this is a journey and you must get through whatever confronts you along the way. Just when you think everything's going well, you might hit a setback. But you keep going.”

And while the journey since January 2011 when Lisa had her stroke has seen many challenges, there have also been many positives - from Lisa establishing her own marketing business to becoming a digital

expert with such esteem in the healthcare space she works with two of the bestknown names within it - NHS Innovation and NHS-affiliated neuro-rehab platform NeuroProactive.

She also supports other stroke survivors the majority of whom are of working age through the creation of Different Strokes West Kent, of which she is chair.

“I think I’m a great example of the need for long-term rehabilitation when you have a stroke in working age,” says Lisa.

“And 11 years in, I have had the highs and the lows. Working for the NHS is the pinnacle of my recovery to date and I am privileged to now be able to help others.”

Lisa was 43, the mother of two primary schoolaged daughters, when her stroke occurred one morning as she woke to go to work.

An award-winning marketing professional and

STROKE

busy working mum, Lisa had experienced hypertension for some time.

“I work one morning and had a bit of a mild headache. I though maybe it was the glass of red wine I’d had the night before. I asked my husband if he could do downstairs and get me a Neurofen,” she recalls.

“When he came back upstairs, I had passed out on the bed and he realised that more than a Neurofen was going to be needed. He phoned the ambulance, but we didn’t know what was wrong.

“I suppose now, with hindsight, I was already aware of my history of hypertension, but I wish now that I had built in some lifestyle changes, like mindfulness and meditation. I was probably putting too much on myself and I should have taken a bit more self care. But that’s easy to say now, on reflection, but in reality I was just living my busy life as we all do.

“I have absolutely vivid memories of that whole morning, of my husband giving them directions because our house isn’t that easy to find. I remember being on the bed, thinking ‘Please just tell them where we are because I desperately need them’.

“But probably most vivid of all is that both of my daughters had got up and out of bed by this time, they were standing with their dressing

gowns on, looking on as I was carried down the stairs on a stretcher by the paramedics.

“My two little girls looking through the slats of the bannisters, watching this happen, is one of the memories I’ve had with me the whole time.”

Having survived her haemorrhage, with 13 months then spent in hospital, the long road to recovery - and the reality of their new life together as a family - was now just beginning.

“When I had my stroke, my children had been seven and nine. When I came back home, they were eight and ten. One of them had was ready to move on to secondary school and all sorts of things have changed in their lives,” says Lisa.

“I was coming back hoping that we could pick up where we’d left off. But you can't do that. It was very odd for a time.

“When you’re in hospital, you think about coming back, but in many ways, it’s not you who comes back. When I came back home, I was still left-side paralysed and partially sighted and lacking executive function of my brain. I had a lot of ongoing daily disabilities.

“I could only leave hospital if I had full-time live-in care support, which was a huge thing for us. So although I came home, I wasn’t really mummy coming home. I was almost this

patient who came home into their lives.”

The process of adaptation was made easier by a series of people who supported Lisa in her recovery, although the reality of being at home was still very difficult.

“My very first carer who came was incredible. I have a few angels on my road to recovery, and she was one of them,” says Lisa, who credits her Catholic faith as being crucial in her journey.

“I was so lucky that she was our first carer because she understood me and understood the children and the dynamics of the family, she was incredible.

“When I first came home from hospital, I was still being PEG fed, because I had suffered so badly with dysphagia. I hadn't been able to eat or drink for that whole first year. But thankfully, after I was at home for a little while, I finally began to swallow, so I could actually eat and have meals with the family.

“With the support of my carer, and that of the community physio, I began my mission to walk. At that stage, I was still having to sleep and live in a downstairs living room, because I couldn't get up the stairs to my bedroom.

“They said the only way I was going to get

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STROKE

to my bedroom would be if they installed a lift in the house - but we’ve got a lovely house and I didn't want to ruin its interior by installing a lift.

“So I said we're not having a lift, I'm going to walk up the stairs. So that's where the whole mission for walking began.

“But at first, I couldn't remember how to walk.

It wasn't just that my body couldn't walk, it’s like I couldn't remember how to do it. So when I first started walking, I literally had to say to myself, ‘Left, right’. I could move my right leg, and then I had to say to myself ‘Move the other side’.

“And after much work, I did it.”

Having continued to progress in her recovery, Lisa, by now aged 50, decided she wanted to challenge herself and took the decision to set up her own business in 2017.

“When I turned 50, it was my birthday present to myself,” she says.

“I gave myself permission to set up my own business because it was something that I wanted to do.

“I thought ‘You've got to do this, let yourself do it, you've only got one life, and you've got to do what you can with it’.”

Seizing upon the years of marketing experience she had accumulated - which had seen her come top in the country for her Chartered Institute of Marketing Diploma in professional marketing and receive an award from the Worshipful Company of Marketors - Lisa decided to use her knowledge and insight to support businesses in building their presence.

“In my mind, I went back over all the different work I'd done in the past. And one of those things was my most recent job, the one I was in when I had the haemorrhage, which was in a local theatre,” she says.

“It was at a time when the Arts Council pulled all the financing for the Olympics. So I found myself the marketing manager of a theatre that had no money, so I had to try and help the theatre be a success with no money.

And I did it.

“So I went back over how I did it, how did I manage to make it such a success. I realised I relied on pure marketing theory and applied it in practice. So I came up with the term ‘thrifty marketing’ and developed an approach where you can achieve your results even when you’ve got no budget.

“One of the main things that I do is I focus

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on something I call ‘social listening’, where I monitor online social platforms to see what people are asking for and what they need. So I match customers with suppliers.

“If I was if I wasn't paralysed, then I wouldn't be sitting around all day scrolling through social media - nobody wants to really be doing that.

“But when you live with reduced mobility, you look at what you can do. And if you’ve got a marketing and sales head, which I have, every time you look at anything, you think of the opportunities that exist. That is proving really valuable for those I work with.”

And from her new-found digital insight, combined with her experience of stroke and neuro-rehabilitation, Lisa has been given roles in consultancy and patient involvement with NHS England and NeuroProactive to help assess their digital offering to survivors and develop and promote them further.

She is also committed to peer support through her Different Strokes group, welcoming survivors at all stages of their recovery to help them negotiate their individual journeys.

“The first thing I say to my new participants who arrive in my group is that you're still you - you're just you after a stroke. That's all. You mustn't forget who you are,” says Lisa.

“In some ways, it’s like after having a baby, and there is such an enormous change in your life.

But over time, you begin to realise, actually, I'm still me, I'm just me after I've had a baby.

“And for me, it has been so important to be able to work with the NHS. There have been some very difficult times, times where you worry people don’t see you and see the fact you’re in a wheelchair.

“I know what it’s like to feel unemployable, even though you know you’re still capable of a lot. But working with the people I do now, they know I work in the mornings because I have my neuro-fatigue rest in the afternoons, but that works.

“Returning to work for young stroke survivors can be very hard, but hopefully I can show people that it can be done.”

Always looking for new ways to support fellow survivors, Lisa’s next project is to compile a bank of case studies, titled Survivor Thrivers, bringing together stories which describe positive outcomes after stroke and brain injury - a project she is working on jointly with Rachel Ngala (nee King) at South London Neurosciences ODN. “I want clinicians to have a source that’s based on true, lived-experiences which can be shared with patients and families at the dark times to give some optimism, not false hope,” she says.

“This is the latest part of my journey; one in which I could only have achieved my successes - physical, emotional and commercial - with the support of my husband, daughters, parents, sisters and my wider family of friends and relations.”

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