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ISSUE 19 QUARTERLY

W E’R E TA K I N G M U LTIP L E S H OT S O N G OAL How the Christopher & Dana Reeve Foundation is upping the ante on its life-changing research into spinal cord injury

H EA D I N J U R Y I N S P OR T: A S P ECI A L R EP OR T ‘If we continue to push the rock up the hill and fight for change, it will happen’ - Dr Chris Nowinski speaks exclusively to NR Times ADVERTISEMENT

An expert for every step of the care pathway How Elysium Neurological is helping people achieve positive, personalised RRP £9.99

outcomes by combining expert knowledge with expert clinical care

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


INTERVIEW


EDITOR'S NOTE

Protect the players now - change cannot wait

In January 2019, at the launch of the Time for Change report, Chris Bryant MP called for action on the ‘invisible epidemic’ of brain injury and to ensure the neurorehabilitation and support was available for those who needed it. That critical urgency to act has only been emphasised further with the growing and truly alarming links between sport and neurodegenerative disease. The recent Parliamentary inquiry admitted it was left shocked by evidence from athletes who were exposed to the consequences of head injury - and the heartbreaking stories of yet more former rugby and football players forced to deal with devastating dementia diagnoses shows the frankly terrifying outlook for professionals throughout sport. Change to help protect our current and future players must happen now, and the inquiry’s report has recommended a raft of changes - which mirror those recommended in Time to Change - which must be implemented and adhered to across the board. Likewise at grassroots level, among both amateur and child players, safety must be paramount. Dr Chris Nowinski, who is widely credited as instigating the major change in concussion protocols in the United States through his book about NFL, told NR Times it is “insane” to allow children to play by the same rules as adults and they must be afforded greater protection.

“We should be focused on what is best for children; they need exercise, not hits to the head,” he says. As the mum of an 11-year-old boy who has just started playing contact sport, the fact he is now taking part in this - given the continuallyemerging research into the cumulative effect of head injury, and the life-changing reality for so many former players - is really very worrying. Additionally, research from Professor Damian Bailey has also shown it is not only direct hits to the head which cause head trauma, it can be the impact of contact - and the fact every player in a rugby team saw cognitive decline in just one season again rams home the message of how urgently change is needed. Our special report in this issue of NR Times focuses on the need to protect players of all levels, and the innovation taking place to help make our sports a safer place. As Dr Nowinski says: “If we continue to push the rock up the hill and continue to fight for change, it will happen”. We at NR Times are committed to playing our role.

D E B O RA H JO HN S O N EDITOR, NR TIMES Deborah@aspectpublishing.co.uk

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CONTENTS 16 C OVE R S TO RY How Elysium Neurological’s EveryExpert approach to neuro care and rehabilitation is helping to achieve positive outcomes

0 6 D RIVIN G FOR WAR D THE F U T URE OF REHAB R OBOTI CS How Fourier’s ongoing global expansion and move into the ’Silicon Valley of the East’ are changing the game

2 4 ‘ W E’RE TAK I NG M U LTIPLE SH OT S ON GOAL’

34- 50 S PE C IA L RE PO RT HE AD INJ URY IN S PO RT

How the Christopher & Dana Reeve Foundation is determined to bring spinal cord therapy to humans as quickly as possible

The 'dereliction of duty' that must lead to change NR Times reports on the urgency to protect sports players, the work being done to support that, and the role in technology in redefining the way forward

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How new technology is giving hope in the recovery of gait and balance for MS and stroke patients

6 0 TH E F U TU R E OF B ABICM We speak to new chair Vicki Gilman about her priorities and ambitions for the organisation

8 2 C O UL D T HIS B E THE LO NG AWAITE D B RE A K T HRO UG H FO R GL IO B L AS TO M A PAT IE NTS ? How hope could be on the horizon through the use of advanced materials and pioneering research

84 M AK ING RE HAB FUN, AC HIE VAB L E AND HIG HLY E FFE CT IVE How a first-of-its-kind NHS rehab centre’s use of VR is redefining traditional recovery for patients

7 4 ‘WE K N OW I T’ S DI FFI CULT T H AT’S WH Y W E EXI ST’ How Paul Spence’s battle to overcome brain injury has led to the creation of a support network for other survivors

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CONTENTS

78 ' THIS IS E XC IT ING AND M O S T IM PO RTA N T LY , IT ’ S HAPPE NING '


TECHNOLOGY

Fourier - changing the world of rehab robotics with ongoing global expansion Leader in rehabilitation robotics, Fourier Intelligence is further increasing its prominence on a global scale through its expansion into Europe and Australia, while also relocating its headquarters into the hugely sought-after ‘Silicon Valley of the East’.

The unicorn is establishing new Fourier divisions in Zurich in Switzerland and Melbourne in Australia and is the latest step in the company’s ongoing and significant expansion. This will add to its existing businesses in Singapore and Malaysia, with its invitation to become part of the globally-esteemed Zhangjiang Science City giving it premium headquarters in Shanghai with the potential to expand its current workforce of almost 400 people, having grown from less than 30 three years ago.

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Indeed, by 2025, Zhangjiang Science City has earmarked Fourier as the flagship tenant of the next phase of development of its AI Robotic Valley - which would see its robotics industry worth $10.8 billion - and would see huge expansion by Fourier; a feat the business is confident it can accomplish. A pioneer in the global rehab tech market, Fourier already has presence in 54 countries around the world, with more than 10 million usage hours for its portfolio of over 20 AI-powered rehabilitation robots. 100 more products are currently in development. Recently, the business - established only six years ago - became the first rehab tech company in the world to secure financial backing from a major player in the international investment market when it gained C+ funding from Saudi Aramco, a coup described as being of “humongous” significance to Fourier and its ambitious plans. And already delivering on its ambitions, Fourier believes its new headquarters - which it moved into in July after being asked by local government to stay following an exhibition of its products in China - help to send out their statement of intent globally.

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TECHNOLOGY

“This is known as the Silicon Valley of the East. I am an engineer and look up to the work of Silicon Valley and the jobs, innovation and companies that have come from there, we want to help emulate that here,” says Zen Koh, co-founder of Fourier Intelligence. “We are a young company but we hope to encourage other companies like us to be a success and to help drive forward advancements in technology for China. We are proud of how we always rise to the challenges and it’s about time we show China and the world what we’ve got. “Zhangjiang Science City and its plans for Robotic Valley are very important. Shanghai is one of the most advanced cities in China but they are acutely aware they need to be more than the factory of the world. People want better jobs and a better life. By building an environment which attracts ambitious startups, budding entrepreneurs and established businesses, they are creating an environment for growth and ambition. “Moving here is huge for us, and I hope this will be the chance for Fourier to truly change the world of rehabilitation - but at the very least, I hope people learn from our experience. There are some very positive and encouraging signals from the rehab community across the world.”

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TECHNOLOGY

WE ARE PROUD OF HOW WE ALWAYS RISE TO THE CHALLENGES AND IT’S ABOUT TIME WE SHOW CHINA AND THE WORLD WHAT WE’VE GOT.

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TECHNOLOGY

Fourier’s further expansion into Zurich and Melbourne - supported by some of the leading scientists and R&D leaders to help advance its research and product development even further - adds to its ten subsidiaries and joint research laboratories around the world, with the potential for further businesses in Chicago, Madrid and London set to be explored in the future. Its Swiss business is hoped to be established by the end of this year, with its Australian division set for mid-2022. Fourier’s rapidly growing global presence places it in a hugely influential position, but one in which they are keen to work collaboratively. “In becoming a truly global business which makes a positive impact on patients’ lives, we are very, very open to working with the entire global rehab community. We welcome the world to work with us and collaborate with us,” says Zen. “We want to compete and collaborate with the best companies out there and in a positive way that can benefit the whole community. We believe that through collaborating and networking with other companies, sharing ideas and positively engaging, we can all get to the next level.” But as well as growing Fourier’s presence and its capability to create life-changing robotics for patients, Zen is also committed to supporting the next generation of talent. “We want to encourage young people and talented engineers to join our industry. That is why Silicon Valley is successful, they attract people to come and be part of changing the world and the way we live,” says Zen, who has worked in the advancement of rehab robotics for over 20 years. “Our ambition when we started was to be a global company and we truly believe that using technology will make human lives better - in continuing to do that, we need to work with the best talent in the world to help us develop something that is truly global. “This is a fun industry and a cool career, but also the chance to make a positive impact on humankind.” One partnership through which Fourier is truly having a positive impact is with Yongchi Rehabilitation Hospital in China, one of the most advanced rehab centres in the country, which has the biggest Fourier RehabHub™ solution with over 30 devices available for use by its patients. With the help of Fourier’s technology, Yongchi has progressed from traditional rehabilitation to intelligent robotic therapy.

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The RehabHub™ concept was launched by Fourier in 2020, and is now widely used in neurorehabilitation, elderly care and community-based rehabilitation settings. The comprehensive rehabilitation solution is equipped with highly efficient, interconnected, and costeffective robots that deliver functional training, assisting clinicians in providing treatments and enabling effective and consistent rehab to patients. Zen believes the RehabHub™ model, against a backdrop of its proven success in Yongchi, can be replicated around the world, to help bring its technology to more people who need it. “Robotics are helping humans to do rehab better, but for many it is something they can’t afford. But through the creation of this state-of-the-art RehabHub™, this is enabling robotics for all, not just the rich people,” says Zen, who is also an ambassador of the International Industry Society in Advanced Rehabilitation Technology (IISART). “We had a launch and patients were so excited they flocked to the clinic, it was a phenomenal success. This could be a very successful model which could be replicated and shared with the world. “Of course people are sceptical about what the outcome will be when they have invested so much money, but when the financial model is right, it can work very well. Yongchi is not in one of the bigger cities in China, but they have adopted this model where they don’t charge high fees and have made it accessible. “We are working to fine tune the clinical and financial model so that robotics can make a difference to people’s lives without burning a hole in their pocket, and we hope this will be used around the world.”

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NRNEWS

The UK’s largest private brain injury rehabilitation provider has been acquired, in a move hailed as “building the next step” for the business. Reach Personal Injury Services has been added to the portfolio of handl Group, to help increase its rehabilitation provision for clients across the country even further. Reach was established in 1994 to provide a home and community-based rehabilitation service for child and adult survivors of moderate and severe traumatic brain injuries. Supporting people nationally for almost three decades, it has grown to become the biggest provider of its kind dedicated solely to brain injury rehabilitation. Reach’s brand and service will be unaffected by the acquisition, and the business joins brands including Corporé, EQL, Claimspace and Speed Medical in handl Group’s portfolio. Managing director of Reach, Heather Batey, will also continue in her role at the helm of the business she cofounded 27 years ago. “It’s all really positive,” Heather tells NR Times. “After 27 years, I wanted to build the next step for the

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business and I strongly believe that joining handl Group will enable us to move forward so that the people we help have access to ever better rehabilitation. “We are now part of a portfolio of companies, which gives the opportunity to work collaboratively, which is another positive thing. “At Reach, we believe that people who have experienced traumatic brain injury deserve every possible chance to lead as normal a life as possible and re-acquire the kind of skills that many of us take for granted every day. “handl Group’s core focus of people and technology working hand in hand fits our own business philosophy, and my expectation is that aligning Reach to the various brands within handl will enable us to significantly broaden our customer base, both within the insurance sector but also into other parts of the healthcare market.” Graham Pulford, CEO of handl Group, says: “Reach represents a great addition to our portfolio of complementary businesses that together provide a wide range of solutions to the insurance and legal sectors. “Reach’s experience and expertise ensure that people who have had the worst kind of injuries have the best possible opportunity to improve and restore their quality of life. “I am confident Reach will make a very valuable contribution to handl’s aims and aspirations, and we’re looking forward to working with Heather and her team as they continue to develop their services in the future.”

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Find out more: www.blesma.org

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NRNEWS

The Government has responded to a petition signed by thousands of people calling for greater access to speech and language therapy (SLT), saying it is “supporting the restoration” of such vital support for those in need.

More than 13,000 people have backed the campaign to increase funding to SLT so it can be made more available to people who depend on such therapy for support with eating, drinking and communication. The COVID-19 pandemic saw the lack of SLT resource impact significantly on people across the country, with the reality laid bare in a report from the Royal College of Speech and Language Therapists. The #BuildBackBetterSLT research showed that over half of those living with neurological conditions who could not access speech and language therapy (SLT) during COVID-19 lockdown saw their mental health, social and home lives worsen as a result. Between March and June 2020, 41 per cent did not receive any SLT, with a further 32 per cent no longer having their therapy in-person. Almost half, at 48 per cent, received less therapy than prior to the pandemic. As a result of this, 40 per cent of people felt their communication or swallowing got worse during the period.

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The petition called on the Government to implement the recommendations of the report and to ensure those who had missed out for so long on much-needed resource could resume at the earliest opportunity. In a response to the petition, the Government said it “recognises the importance of meeting the needs of those with communication issues and eating and drinking challenges; and ensuring that recovery addresses these problems” and pointed to the additional £1 billion funding it is providing to the NHS in 2021-22 to reduce waiting times. It hailed the RCSLT report as providing “important information that the wider NHS can consider and utilise, alongside other sources of evidence, to help improve support for people with communication and swallowing needs”. In a statement, it added that it is undertaking the biggest nursing, midwifery and Allied Health Professional recruitment drive in decades, which includes recruitment of speech and language therapists. In 2020 there were 620 acceptances to speech and language therapy programmes in England, an increase of 28 per cent on 2019, said the Government. RCSLT chief executive, Kamini Gadhok, urged people to continue to sign the petition and highlight the need for urgent action. “As our Build Back Better report has shown, too many people have been unable to access the speech and language therapy they need throughout the pandemic and during lockdown. Inevitably, this has impacted negatively on many different areas of their lives, including their mental health,” she said. “We want people to get the support they need to enable them to live their lives as fully as possible, which is why we’re urging the public to add their signatures to the petition and encourage their friends, family and colleagues to follow suit. “Together, we can make a difference to people with communication and swallowing needs.”

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INPATIENT REHAB

Richardson Care Shows True Family Credentials Richardson Care provides specialist residential care for adults with acquired brain injury. Established over 30 years ago, it is one of the few remaining familyowned and run businesses in the sector. It provides a unique homely environment where each home feels like a family unit. This stable and supportive environment helps service users to feel secure and better engage with their therapies, all combining to enhance their quality of life. In December 2020, Jean Woods, the 87-year-old grandmother of Director, Laura Richardson-Cheater, was recovering from a broken hip and had early stage dementia. There were no rehab places available so she was assessed and admitted to Richardson Care.

When Jean arrived, she couldn’t weight-bear and was in a very confused state. Regular physiotherapy, psychological therapy and psychiatry support had a marked improvement on her well-being. After six months she was well, strong and fit, ready to be discharged to elderly care. She could walk with a frame and was cognitively much better, despite her advancing dementia. Laura says: “We know that it’s a big responsibility caring for anyone’s loved one who is vulnerable and can present with challenging behaviour. The care team used their skills and experience to focus on Jean’s personal needs – as they do with any service user. This positive outcome is a credit to the whole staff team, who were under additional pressure at the height of the pandemic. We are very grateful.” For more information about residential care and rehab for adults with brain injury call 01604 791266 or go to www.richardsoncares.co.uk

Respect & Restore Specialist residential care and rehabilitation for adults with acquired brain injuries. • Portfolio of services to meet a variety of needs • Innovative person-centred care • Unique ‘family’ environment • Focus on social integration • 30-year proven track record Proud to be an independent family business.

Call us on 01604 791071 to find out more or email admissions@richardsoncares.co.uk

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


THERAPY

A Chance for Life Ltd extends neuro-rehab services in the North Respected neurological physiotherapy provider Neurocare Physiotherapy now falls under the umbrella of complex case management and rehabilitation specialist A Chance for Life Ltd. It’s a move that extends the range of patient services in the North and improves patient journeys too. There’s an inevitable challenge for any organisation delivering neuro rehab. With such a wide range of conditions to treat, it can be difficult for any organisation to build a pool of expertise large and diverse enough to service them all. But Louise Chance, founder of A Chance for Life Ltd the specialist in rehabilitation support work, case management, physiotherapy, occupational therapy and medico-legal reporting, has found a solution to that challenge. Louise has combined her team’s capabilities with those of Lancashire-based Neurocare Physiotherapy. For almost two decades, Neurocare Physiotherapy has treated patients across the north-west of England for neurological conditions such as stroke, multiple sclerosis, Parkinson’s, foot drop, head injury and other disorders. For much of that time, A Chance for Life has worked in a

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similar space from its base in Penrith, providing support for clients who often have a variety of social, physical, mental and vocational needs. Louise saw an opportunity to bring the two organisations together: “We saw that what we do and where we do it dovetails nicely,” says Louise. “Being able to expand the range of care we offer across the north of England and southern Scotland is so important, because it means our clients can access more of the support they need from a single source.” Please get in touch to find out more: 01768 891709 • www.achanceforlife.co.uk

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Plans have been unveiled for a new purpose-built care centre of excellence for people living with MND, with the £5million fundraising appeal spearheaded by Rob Burrow. Former Leeds Rhino Rob has been courageously sharing his story of MND with the public since he was diagnosed last year at the age of 37, and he has raised the profile of the condition beyond all expectations, as well as helping to raise almost £3million for the MND Association. The new centre – The Rob Burrow Centre for Motor Neurone Disease – would support people with MND living in and around the Leeds area, like Rob. He refers to his care at Seacroft Hospital, where the MND centre is currently based, in his latest autobiography and a BBC documentary, also filmed at Seacroft, was shortlisted for a Television Award. There are currently around 80 people like Rob being treated for MND in Leeds, double the number of people the service supported ten years ago. Since he was diagnosed, Rob has actively campaigned to help raise awareness and raise funds in support of MND charities. Having excelled in his sporting career, he now plans to support the creation of a centre of equal standards that will benefit many more people living with this disease, alongside his friends and close supporters, which include former Leeds Rhinos player Kevin Sinfield and actor Matthew Lewis. “Imprisoned in the brutality of MND, my vision is that people diagnosed with MND hear the news in a calming and tranquil sanctuary,” says Rob. “I envisage a beautiful, welcoming building that is user and family friendly. A place where patients feel comfortable to bring family members into a safe and homely environment for them, with signs of hope and optimism. “For carers of those with MND, it is important to know that their loved ones are in the best possible place. Something every MND sufferer and their families deserve. “Although the news won’t be any better, it will be easier to come to terms with in a purposely built care centre that meets the needs of every MND patient.” The Leeds Rhinos Foundation, official charity of the

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Leeds Rhinos where Rob played professionally for 16 years, have been the first to pledge £50,000 in support of the MND centre appeal. The appeal for a new MND centre recognises the need for a dedicated centre in Leeds, providing a better patient environment. Originally built in the early 20th century, with care for infectious diseases in mind, the current home of the centre is now showing its age. Significantly, the technology relating to the care needs of people with MND has moved on, whilst the building remains the same. The current MND centre is located on a busy multipurpose ward not built with MND patients in mind and without the ability to be fitted with equipment and facilities for those who are physically impaired. Dr Agam Jung, consultant neurologist who leads the MND team at Seacroft Hospital, says: “We want to provide a safe haven for our patients and their families – a peaceful environment that reiterates to them that they have the best possible care, helping them ‘live in the now’, a serene place that instils hope and courage.” The vision is for a space that is bright and modern, that has windows and gardens, with spaces for families to be together, or quiet rooms to reflect in after difficult conversations.

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COVER STORY

EveryExpert: An Expert For Every Step Of The Care Pathway The best neuro care and rehabilitation depends upon expert clinicians working together as one team, with one common goal to improve people’s care and quality of life. In this article we learn how Elysium Neurological’s EveryExpert approach to neuro care and rehabilitation is helping to achieve positive outcomes for the individuals they support.

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COVER STORY

Expert clinicians working together as one team

Elysium Neurological operate six neuro care and rehabilitation services across the UK and provide complex care for a variety of conditions, including ABI and spinal cord injuries, Huntington’s, PDOC, spasticity and complex dementias. Front and centre to Elysium’s approach to complex care is the firm belief that when clinical experts collaborate and share best practice and knowledge, individual outcomes for patients are improved and quality of life of each person is optimised. Whatever care pathway is most suitable for an individual’s needs, Elysium’s promise is to always have the best clinician, with the most relevant and effective knowledge of their condition and treatment, supervising their care. This EveryExpert approach to care is based on three key principles (left). We spoke with some of Elysium’s senior team to find out more about what these key principles entail.

Expert Clinicians Working Together As One Team

Combining expert knowledge with expert clinical care

Achieving positive outcomes personalised for each individual

“Collaborative working is the most effective way to achieve positive outcomes for the people we support,” says Joy Chamberlain, CEO of Elysium Healthcare. “We can see first-hand how individual outcomes are improved when all clinicians and therapists involved in a person’s care work together, drawing upon each other’s specialist knowledge and experience. “Across our Neurological division, this approach is vital so that we ensure that the many complex and diverse needs of individuals in our care are met. That means whether they have an acquired brain injury or are living with a neuro-progressive condition, our team of experts are there to provide the most effective care and treatment at the most appropriate point of their care pathway.” Collaborative working also plays a significant role in maintaining quality of life for individuals. Professor Quazi Haque, Executive Medical Director of Elysium Healthcare, explains the impact of the EveryExpert approach and the provision of holistic care on wellbeing. Quazi says: “We’re always mindful that quality of life and wellbeing should be prioritised no matter what condition someone is living with, or what injury they have sustained. And this is where real team work comes into play - be they an OT, psychologist, psychiatrist, physiotherapist or a member of our care team, everyone at Elysium works together to ensure a joined-up approach to complex care, that focuses on the individual needs of each person. “In this way we can respond to changing care or rehab needs, the team will be in agreement on the goals and outcomes they are working towards, and wellbeing is a central focus of all collective decisions. We see huge benefits to the individual receiving care and we know that this can then help aid recovery or maintain quality of life.”

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COVER STORY

ACROSS OUR NEUROLOGICAL DIVISION, THIS APPROACH IS VITAL SO THAT WE ENSURE THAT THE MANY COMPLEX AND DIVERSE NEEDS OF INDIVIDUALS IN OUR CARE ARE MET. THAT MEANS WHETHER THEY HAVE AN ACQUIRED BRAIN INJURY OR ARE LIVING WITH A NEURO-PROGRESSIVE CONDITION, OUR TEAM OF EXPERTS ARE THERE TO PROVIDE THE MOST EFFECTIVE CARE AND TREATMENT AT THE MOST APPROPRIATE POINT OF THEIR CARE PATHWAY. NRTIMES

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Combining Expert Knowledge With Expert Clinical Care

Achieving Positive Outcomes Personalised For Each Individual

Ensuring that expert knowledge and best practice is embedded across the provision of care helps team members make informed decisions about how to best to provide complex care. Professor Nick Alderman, Clinical Director, Neurobehavioural Rehabilitation Services & Head of Psychology, has recently led a project to ensure that all six Elysium Neurological services have reviewed and agreed a set of outcome measures for each care pathway that is being implemented across the division. As Nick explains, this is a significant development in measuring the standard of care Elysium delivers and an important step forward in combining clinical knowledge and continually improving the services. Nick says: “Our agreed outcome measures were decided through consultation with experts both within and outside Elysium Healthcare, drawing upon a wide range of knowledge and experience to ensure we have the most comprehensive system possible to improve the patient pathway. “When outcome measurement is embedded within a model of working, it benefits an organisation in many different ways. There is a culture of reflection and ongoing objective measurement, where all staff teams reflect upon what we are achieving and its purpose. In this way, health benefits and positive outcomes become an integral part of practice. “We can now combine expert knowledge with the actual care that is being provided in our services. It helps us monitor the efficacy of the treatments and therapies that are being delivered and the impact on the person and their experience of care.”

Listening and responding to the needs and wishes of individuals and their families is a central concern within the provision of complex care at Elysium Neurological. Often individuals have been admitted unexpectedly to primary care, perhaps by sustaining a traumatic injury. This may then have led to an extended period in hospital whilst receiving care from multiple care teams, before they arrive at an Elysium service. It can be a particularly difficult experience for individuals and families to navigate and so Elysium endeavour to make their provision of complex care as personalised as possible. “Involving the individuals we support and incorporating their wishes in care is fundamental to our approach,” says Sheila Manisier, Business Development Director for Elysium Neurological. “Patient inclusion and empowerment to influence and shape the experience and delivery of complex care is crucial. Without taking on board what individuals need and want, there is a big gap in service provision. Engaging with people and their families means that positive outcomes are truly reflective of personalised needs and not just those of a healthcare system. “We also actively pursue partnerships with specialist organisations and associations across the different care pathways we work in. We’ll do whatever we can do to ensure we have the latest knowledge, treatments and support available within our services so that each person receives the best care and support to fulfil their individual needs.”

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

INVOLVING THE INDIVIDUALS WE SUPPORT AND INCORPORATING THEIR WISHES IN CARE IS FUNDAMENTAL TO OUR APPROACH 19

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CASE MANAGEMENT

A force for change in case management As an ambitious and fast-growing business, Breakthrough Case Management is proud to be a disruptor. Keen to shape the future of case management and encourage more healthcare professionals into the sector, Breakthrough is pushing the boundaries of tradition and helping to create a new future for clients and case managers alike. Established in 2018 to deliver the person-centred service to clients which is of central importance to its founders Annabelle Lofthouse and Catrin May, Breakthrough is now helping to redefine rehab provision across the whole sector with its development of digital solutions. Working alongside academic and scientific partners, Breakthrough aims to push the boundaries of rehab provision with digital innovation, which is set to provide a raft of new resources to case managers in the near future. “I’d say we are changemakers, we believe in change being a force for good. We believe in innovation and enhancing rehab through digital solutions,” says Annabelle, who, like co-founder Catrin, is a registered nurse. “We’re really keen to revolutionise how rehab services are delivered with a view to driving up quality. We are working on digital solutions which will add real quality and will make an impact. “But digital solutions will never replace the human touch and do not detract from the value of one-to-one care. We passionately believe in the value of in-person support. Our whole ethos is founded on delivering what is in the best interests of the client. And it is that ethos which inspired the creation of Breakthrough, a case management business based in the South West, which routinely operates across the South of England but also has clients throughout England and Wales. Growing strongly and continually adding new highly

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skilled case managers to its team, Breakthrough’s foundation comes from a shared desire from its founders to drive the sector forward. “Catrin and I have never wanted to reinvent the wheel, but we did want to sprinkle our own magic into the industry,” says Annabelle, who has worked in healthcare for over 30 years. “We know what high-quality, great rehab looks like and that’s what we wanted to deliver. It’s never about one size fits all, and nor should it be. We want to stay true to who we are as clinicians and want to make a difference, that’s what makes you feel good at the end of every working day. “We’re a growing business but we have determined from the offset to avoid becoming too corporate, as people come to us for the personal touch. In case management, the relationships you build with clients and professionals can last for years, and it’s fundamental to our business that we are person-centred and ever present in everything we do. “We have a team of high performing people here at Breakthrough who completely share this ethos, and by doing the work we’re doing, we hope to raise the profile of case management. “It could be a great career move for anyone wanting to use their clinical skills and expertise in a different environment, many health care professionals aren’t 20


CASE MANAGEMENT

aware of case management as a unique and distinct discipline. “This was certainly true for me when I first got involved in this field of practice - the role wasn’t very well known back then, this is thankfully changing a little but I think there is much more to be done to promote career options in rehabilitation. “We’re on something of a mission to help change that and to raise the profile of case management.” Having become established as a key name in the sector, Breakthrough began to look at other opportunities to bring high-quality and much-needed provision to healthcare. In addition to its core offerings, the business has ambitious plans to branch even further into wider health and wellbeing initiatives, which Annabelle describes as being “very much a case of watch this space”. Its care division, Breakthrough Care, has played a vital role over the past 18 months during a time of uniquely high pressure for all providers, going from plan to reality within a few weeks after the outbreak of the COVID-19 pandemic. “Breakthrough Care has gone from strength to strength and we continue to build strong relationships with the NHS, local authorities and commissioners” says Annabelle. “We’ve always thought outside the box anyway, but the advent of SarsCov2 saw us mobilise and push forwards with planned innovations so that we were well placed to make a difference in every way we could. “In addition to looking after our clients and case managers, we wanted to support care. Developing our care service has been really rewarding and the response has been very good. We’re not about providing ad- hoc rehab or care, we look at providing tailored rehabfocused solutions which promote long term recovery. “As case managers, we recommend, implement and co-ordinate rehabilitation for clients who have suffered life-changing and catastrophic injury so we know the very real difference effective intervention and support delivers. “We drew on our case management expertise and the fact we know what great rehab looks like to create a new and innovative care solution. “It’s a different approach and one we are very proud of. We know that if you can create a situation where functional recovery is promoted and enabled every day, you can achieve great results.” 21

WE KNOW WHAT HIGHQUALITY, GREAT REHAB LOOKS LIKE AND THAT’S WHAT WE WANTED TO DELIVER. IT’S NEVER ABOUT ONE SIZE FITS ALL, AND NOR SHOULD IT BE. WE WANT TO STAY TRUE TO WHO WE ARE AS CLINICIANS AND WANT TO MAKE A DIFFERENCE, THAT’S WHAT MAKES YOU FEEL GOOD AT THE END OF EVERY WORKING DAY While still a relatively young company and having weathered the storm of a global pandemic – alongside expanding to provide a suite of complementary services - Breakthrough sees its role going forward as helping to lead the thinking digitally, while never compromising on the personal touch for which it is known. “If you have digital tools in your armoury which enable you to deliver better health, wellbeing, care, rehabilitation and recovery outcomes, then winning hearts and minds becomes quite easy,” says Annabelle. “On paper, some digital ideas and solutions might not sound like something people may want to consider, particularly in an increasingly remote world with so much virtual communication, but I think it’s likely to be a situation where you try something and wonder how you ever managed without. “There is a lot of really innovative work going on and we’re so passionate about helping to make the change and be the change. “It’s not about replacing person-centred care or losing the personal touch - it’s about adding to that and giving the best possible quality of rehab you can.”

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NRNEWS

Unique standing wheelchair seeks development partner A mother and son team who devised a pioneering standing wheelchair are looking to partner with a manufacturer to bring their prototype to fruition. The Walking Wheelchair enables people with limited use of their legs to assume a standing position, using a saddle therapy seat and Segway-style wheelbase. Its design, which is aimed at people living with conditions including Muscular Sclerosis, Cerebral Palsy, Motor Neurone Disease and spinal injury (L1-5), is protected by patent and has already won awards for its innovative design. It differs from what is already available through its saddle seat lifting the user’s weight vertically to standing, rather than a conventional seat which tips, and has a gyroscope to balance the standing weight instead of a counterweight. It also has a two wheel wheelbase with a tight turning circle rather than the standard six-wheel base. Now, its creators Suzanne Brewer and her 14-year-old son Jarvis, are looking to bring their idea to reality by finding a company to license the Walking Wheelchair and add the product to their range. Work on the idea for the Walking Wheelchair begun in 2018, when Jarvis was just 11, and he and his mum were inspired by the experience of Andy Masters, who lives with spinal injury and uses a wheelchair, at an event they had attended at their local rugby club in South London. Unable to be noticed amidst the clamour at a busy bar, Suzanne and Jarvis realised the everyday struggles Andy and others who use a wheelchair must experience, and were compelled into action by a children’s enterprise competition being run by Sky News. From there, the concept has developed hugely, with its initial prototype being redesigned following insight from experts at Stoke Mandeville Hospital and the Back Up Trust - with the design’s inspiration Andy being one of the advisors - and product is now ready to launch. Suzanne, an architect and owner of Suzanne Brewer

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Architects, will be exhibiting at Naidex 2021 in their search for a partner to help launch the Walking Wheelchair. “From seeing the need for a more discrete standing wheelchair than anything that was available, we did some designs and then ordered the parts from eBay so we could build it - we had to take it to a prototyping company for that bit, that was a bit far for us,” recalls Suzanne. “We have had some great insight and support to help us on our journey. For example, Jarvis loves being on his bike so we initially included a bike seat, but after we visited occupational therapists at Stoke Mandeville, they recommended we use a Bambach saddle seat instead. “We came at it initially from a design perspective, but our feedback has made us realise how the Walking Wheelchair can positively impact posture and bowel movement, we’ve realised the benefit it could have on people’s needs. “It has been brilliant to work on this with Jarvis, we’ve both really enjoyed it, and it has turned into something which we hope will make a difference. Now, we are looking for a company who will add our product to their range.” While the Walking Wheelchair was due to be unveiled at Naidex 2020, which was cancelled due to the COVID-19 pandemic, Suzanne says the extra year has been both helpful but frustrating. In the past year, the invention won the product design category of the international Dezeen Awards, and was named a finalist in the international Intelligent Design Awards, having been nominated by the British Design Fund. “In some ways we lost a lot of time, but in others we were able to gain momentum through the awards and we got a bit of national press too. We’re keen to make up for lost time and are looking forward to meeting people at Naidex and to hopefully finding a company to work with,” says Suzanne. 22


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INTERVIEW

A legacy of hope The inspiration Christopher Reeve gave to people living with spinal cord injury during his life is being continued by the Foundation that bears his name, with the quest to find a cure for paralysis moving closer by the day. Deborah Johnson speaks to Maggie Goldberg, President and CEO of the Christopher & Dana Reeve Foundation, about its world-leading research to change the future, coupled with a commitment to supporting people who need help today

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24


INTERVIEW

“So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.” Christopher Reeve’s words, while applicable to so many situations in life, resonate more closely with the spinal cord injured community with every passing day. Once regarded as a permanent status, with little to no hope of recovery, pioneering research now underway into finding cures and treatments for paralysis is helping to change the outlook of millions of people around the world. And from being widely credited as putting a human face on spinal cord injury since his equestrian accident in 1995, bringing the issue to the fore globally and laying bare the reality of paralysis, the role Christopher - known and loved by so many as Superman - played in challenging the accepted norm during his lifetime is being carried forward by the Foundation that bears his name. Now synonymous with fighting the cause of people living with spinal cord injury, the Christopher & Dana Reeve Foundation continues to break down barriers in what is possible, delivering on its dual mission statement of Today’s Care. Tomorrow’s Cure. ® Offering a wealth of practical support and resources to individuals and caregivers across the world via its website, as well as making grants to non-profit organisations across the United States, for the past 19 years, it has been changing lives through its National Paralysis Resource Center (PRC). Co-founded by Dana Reeve to support the millions of people – like herself – seeking information and a centralised place to seek practical and emotional support in their day-to-day lives, the PRC continues to be the only national program that directly serves the 5.4 million Americans living with paralysis. Each year, the Foundation supports three million people virtually, with around 110,000 people receiving oneon-one personal support since the establishment of the PRC. But in its quest to change the future, its support of research - to which it has committed approximately $140 million - is giving hope and accelerating progress across a full spectrum of spinal cord research from basic science to clinical trials and real-world treatments. “At one time, spinal cord injury was really seen as the graveyard of neuroscience. People didn’t have hope,” 25

Maggie Goldberg, President and CEO of the Reeve Foundation, tells NR Times. “We believe spinal cord injury is curable, and we’re now taking multiple ‘shots on goal.’ We’ve always been very traditional in funding academic research, but now we are trying to get into humans as quickly as possible. This is a very exciting time.” And through its approach, more wide-ranging than ever before, the Reeve Foundation is stepping up its efforts to bring this new-found hope for people with paralysis to reality. Investments have been made in some of the most promising businesses in neuroscience and biotech from ONWARD, creators of the spinal cord stimulation ARC Therapy, whose first device is set to be launched within the next two years, through to early-stage Axonis Theraputics in support of its research in breakthrough drug discoveries. And through the groundbreaking, The Big Idea project, the next generation of neuromodulation is being fasttracked and brought closer to reality every day. From its launch in 2014, the first epidural stimulation implant

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INTERVIEW

was made in 2018 - 22 people to date, all of whom live with paralysis, have now received such implants. The study will be fully enrolled with 36 patients by July 2022. “The study was designed with stakeholders in mind, individuals living with paralysis due to spinal cord injury, with a goal to improve cardiovascular ability and provide advances in stepping and standing,” says Maggie, who recently became President and CEO of the Foundation after long being part of its leadership team. “But what we are seeing, even though it was not initially part of the study, are improvements in the secondary complications which affect quality of life. There is someone in The Big Idea study who, since being implanted, hasn’t been in hospital in six months. “This is extremely exciting, and patients are reporting it themselves. We are now seeing what a hugely important component implantables and technology are in both spinal cord injury and the health implications. “We want to bring this therapy to the wider community, but that is easier said than done. There are a lot of steps. It’s not one size fits all as every single injury is different, but we are focused on continuing our work and providing the evidence.” With world-leading research underway, the Reeve Foundation continues to do all it can to maximise its potential to the full, and is exploring more opportunities for collaboration. “We are a big proponent of coalition building and are excited by work being done by other foundations and we want to work with them. We want to get the most promising therapies into humans as quickly as possible, and are looking at how we can deliver that in a holistic way,” says Maggie. But while looking to change the future for people with spinal cord injury, the Reeve Foundation is equally committed to supporting individuals and families now in every way they can.

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“We want to be available to assist when someone is affected by paralysis. We know the devastating impact it has on the individual, their caregivers, family and professionals. Whether it’s providing information, answering questions, peer mentoring, advocacy, we want to give people hope and tools,” says Maggie. “In the United States, the type of insurance a person has may determine what therapy, assistance or nursing one may receive once they are integrated back into society, sometimes that varies between state. No matter the situation, our resource center can help connect people with services. Our goal is to help the individual have the highest quality of life through employment, sports, education, or advocacy. “This is such a large country and so diverse, some areas are so rural that access to transport is a real issue. In some areas like New York City, we can focus on accessibility for people with paralysis, but in rural Montana or Wyoming, there may not be access to public transport, they may not have access to a rehabilitation facility or to employment if they can’t physically get there. It can be very isolating. “We believe social connections are important. After you have a spinal cord injury, you go through a grieving process. In an instant, everything changes, and the way you interact with society may not be the same. Some people may not even be able to go back to their home. We look at every aspect of how we can be available to assist.” And while delivering support and, crucially, hope to people living with spinal cord injury around the world, the Reeve Foundation is also committed to continuing the work of Christopher Reeve in raising awareness and changing perceptions of paralysis. Both Christopher, who passed in 2004, aged only 52, and Dana, who tragically lost her life to lung cancer at 44 just two years later, worked tirelessly to change the lives of millions of people, and alter the awareness around paralysis for millions more. Maggie shares this priority and is committed to ensuring this continues to be at the heart of the Reeve Foundation. “My passion is to help others understand why this cause is so important, why they should care about it,” she says. “When I was 16, I broke my neck in a car accident and had to wear a brace for six months. Doctors told me it was a matter of centimeters, or my injury could have been the same as Christopher Reeve. “Spinal cord injury is still not well understood, and there is the civil rights issue too. We have an incredible team, and we’re all doing all we can to address the myriad components of care and cure within our community.” 26


Kemsley, St Andrew’s Northampton

Neuropsychiatric services For over 40 years our purpose has been to transform lives and optimise the potential of those in our care. Our specialists support over 200 people each year and help to restore autonomy and support a return to community. We offer: Specialist pathways including brain injury, dementia and Huntington’s disease

Tailored care to support complex cognitive, emotional and behavioural presentations

On-site vocational, educational and voluntary facilities

Full-time MDT based on-site and supported by extensive allied healthcare professionals

Dedicated environments for men and women

Services for patients detained under the Mental Health Act 1983 (amended 2007)

Getting in touch For more information about our neuropsychiatric rehabilitation services or to make a referral: t: 0800 434 6690 (we welcome text relay calls) e: enquiries@standrew.co.uk w: stah.org/neuro Registered Charity Number 1104951


Royal College of Physicians – Accreditation Pending APIL Training – Accreditation Pending

TIME FOR CHANGE

SUMMIT 2021 Royal Society of Medicine, London and Online

Monday 8th November 2021 www.ukabif.org.uk/summit2021 #UKABIFSummit21 BRAIN INJURY SESSIONS: Brain Injury in Parliament Women, Brain Injury and Sport Improving Clinical Practice for People with Brain Injury Opening Pandora’s Box on Neurotechnology UKABIF Awards for Film, Innovation, Research and Inspiration Driving Change in the Brain Injury Sector A CPD accredited educational and collaborative event for academics, clinicians, care providers and voluntary sector organisations to discuss developments and improvements in the delivery of care for people with acquired brain injuries. This event is kindly sponsored by


Sponsored by

UKABIF Awards 2021 UKABIF is accepting applications and nominations for the UKABIF Awards 2021 The categories are:

UKABIF Film Award

SHORT

FILM COMPETITION

Whatever your experience of brain injury we want to hear your story. The award will recognise a short film, of no more than five minutes, that shows how a brain injury has affected your life, whether you have lived the experience as a survivor, parent or carer. The winner will receive £500.

Mike Barnes Award for Innovation MIKE BARNES AWARD FOR

INNOVATION 2021

INSPIRATION.

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

Stephen McAleese Award for Inspiration

The award will recognise an individual for their inspirational work in the field of Acquired Brain Injury.

UKABIF Poster Prize

If you have a research project which focuses on brain injury you can enter the UKABIF Poster Award – posters presented at previous events are accepted and encouraged! The winner will receive £100, free UKABIF membership for one year and free admission to the 2022 conference.

UKABIF would like to thank Elysium Neurological for sponsoring the award programme for 2021.

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

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


INPATIENT REHAB

Exemplar Health Care: meeting the growing demand for specialist nursing care Improvements in healthcare and living standards mean that people in the UK are living longer. However, chronic conditions, disease and disability mean that the number of people with complex needs is also increasing.

Meeting the care requirements of these people, and ensuring that they get the right care, by the right team and at the right time, is a challenge for commissioners. Exemplar Health Care is a specialist provider of nursing care for adults living with complex and high acuity needs, which currently has 35 care homes across England - and plans to double in size by 2026. “We have an ambitious growth plan over the next five years, and we are currently expanding in the Midlands, North West, North East and Yorkshire and Humber,” says Charlotte Lloyd, developments director at Exemplar Health Care. “We are different from other care providers. Around 60 per cent of our service users come to us following a failed placement, having not settled at their previous home or homes. “This is mostly due to their previous placements not being fit for purpose in terms of the environment, staffing levels and staff training. “There is evidentially a gap for younger adult services and we are the answer to that.”

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Exemplar Health Care point to the factors it believes are its USPs as being crucial to its expansion - its strength in effectively supporting those with behaviours which challenge; its high staffing levels; the fact it creates tenbed units to promote small group living; its focus on community involvement and re-integration; and the provision of in-house therapy teams. It also highlights the positive impact of its in-house ‘Exemplar Positive Behaviour Support’ training which has been certificated by Bild ACT, and five in-house leadership programmes which are CPD accredited. “Our high staffing levels of Registered Nurses and Health Care Assistants, and holistic approach to care, ensure that people get the right care, at the right time, the first time round,” says Charlotte. “This reduces re-admissions to acute settings, facilitates faster returns to lower-cost community living and brings an end to the cycle of failed placements. “We’re building more specialist care services across the country, to meet the growing demand for complex and high acuity placements. “One thing that makes us different is that during the assessment process we do a ‘community fit’ assessment, as well as a care needs assessment. “This ensures that the home is the right ‘fit’ for the individual, and that they’re the right ‘fit’ for the people who are already living in the home. “We work closely with a number of CCG’s and local authorities to understand the gaps they have, and involve them in the process to ensure that our new homes are fit for purpose and meet local need and demand.” Such demand for specialist placements is something that continues to grow, which inspires Exemplar Health Care to increase the resource available to people badly needing such specialist resource. “The number of children born prematurely or with other 30


INPATIENT REHAB

medical or complex conditions is growing,” says Charlotte. “So, too, is the number of older people developing complex needs in later life. This is leading to an increase in demand for complex care services. “High-quality, person-centred care for people living with complex needs often requires the support of a multidisciplinary team, which involves Registered Nurses, Health Care Assistants and other specialist roles such as clinical experts, psychiatry, physiotherapy and occupational therapy – as well as high staffing levels, an adapted environment and specialist equipment. “This comes at a cost - but public sector funding is decreasing. “These ongoing financial challenges can often lead to people being placed in an unsuitable or inappropriate setting, that isn’t able to meet their complex care and clinical needs. “This can have a detrimental effect on people’s health and wellbeing, as well as the wellbeing of their family and friends. There is also a high number of people spending an unnecessary amount of time in hospital settings due to the shortage of specialist nursing home providers. “We find that a lot of people are placed out of their area as there is not enough provision for specialist nursing homes close by – when opening a new home in a new area, we often receive referrals to support service users being repatriated.” The latest addition to the Exemplar Health Care portfolio is Blackmoor in Birmingham, a 30 bedroom home comprising three ten-bed units, which will support people living with complex mental health needs, including behaviours which challenge, early onset dementia and neurodisabilities. Its Tolkien Unit is a ten-bed male-only community. It supports those living with complex mental health needs, neurodisabilities, complex physical health needs and behaviours of concern. The James Brindley Unit is a ten-bed mixed community. It supports those living with complex mental health needs, early on-set dementia, brain injuries and neurodisabilities. And the Bournville Unit is a ten-bed female-only community, which supports those living with complex mental health needs, neurodisabilities, complex physical health needs and behaviours of concern. It adds further to the provision from Exemplar Health Care in the area, with two specialist nursing homes in Birmingham - Otterburn and Maypole Grove - and Bridgewood Mews and Parkside in Tipton. While each home continues the provider’s overall commitment to delivering personalised care to each resident, the creation of each one builds upon the last. 31

“Each time we build a new home, we’re continually learning and enhancing the design of the homes, and we implement lessons learned along the way,” says Charlotte. “At Blackmoor, we’ve implemented more energy efficiencies including under floor heating, LED and automatic lighting and all our new homes are fitted with electronic car charging points. “A few months ago, we asked our Service User Council what enhancements they’d like to see in our homes. “They fed back a range of suggestions including bigger bedrooms with more space for equipment, more communal living spaces, accessible outdoor spaces and a hydrotherapy bath - so we used this to adapt the design of our new-build homes, much of which has been incorporated at Blackmoor. “At Blackmoor, the overall size of service user bedrooms and en-suite bathrooms has increased. We’ve also included lots of communal spaces such as a hub area with bistro/coffee shop set up, a salon including hairdressing back basin, Barber chairs and nail bar, a multi-faith room and a sensory room. “There is also an assisted bathroom on each floor which has a hydrotherapy bath with sensory and spa-like features. “All of our homes benefit from the same support from Central Services including clinical experts, behavioural support specialists, learning and organisational development, marketing, HR and recruitment support.” Blackmoor is also another example of the role Exemplar Health Care’s homes play in their local communities, with the provider keen to make a positive impact. “During the planning phase, we worked closely with the local authority and purchased seven new park benches for the local community,” says Charlotte. “The home has also created over 100 jobs for the area, ranging from nursing and health care assistants, domestic, administration, catering and management positions. Our first new cohort will benefit from a unique four-week induction and training experience to ensure the staffing team are well prepared for our new admissions.”

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INSIGHT

Supporting brain injury survivors in returning to work Sabrina Lawlor is a Principal Lawyer at Slater and Gordon and is experienced in representing individuals who have sustained life changing injuries. Sabrina is also a disability inclusion advocate and Chair of the Disability and Accessibility Network at Slater and Gordon. In this article Sabrina shares her experience of the impact an acquired brain injury can have on an individual’s ability to return to work, the obstacles often faced, and why a carefully planned vocational rehabilitation strategy is so important. She also shares why support for employers to ensure their workplaces and processes are as disability-friendly as possible, provided by organisations such as The Brain Charity, is vital. According to the Valuable 500, 80% of hidden disabilities are acquired between the ages of 16 – 65 years old (1) and most individuals who suffer an acquired brain injury are young adults in their productive working years (2). The consequences of an acquired brain injury can affect how we perform the day-to-day activities many of us take for granted, such as reading, listening, concentrating, focusing, retaining new information and communicating with others. As a serious injury solicitor, I have experienced many humbling learning curves supporting clients from all walks of life rendered disabled (3) after experiencing lifechanging injuries. A common issue I experience is the impact on the individual’s ability to return to work following an acquired traumatic brain injury. The significant psychological effect of not being able to return to work can be profound – it is often a devasting blow to confidence and selfesteem. I have experienced many different employment outcomes following an acquired brain injury, including new career paths, resignations, reduced hours, and early retirement.

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This is best demonstrated through the lived experiences of my clients, such as Mark*. Mark was 17 years old when he was assaulted by a gang of youths. He suffered a traumatic brain injury and as a result lost the opportunity to pursue a scholarship in the USA to play semi–professional rugby. Following a period of rehabilitation, Mark decided to pursue a different career path but was met with many challenges. He disclosed his traumatic brain injury to new employers but did not always receive the help and support legally required under the Equality Act 2010. Mark is currently unemployed. Another client, Rodney*, was a teenager when he suffered his traumatic brain injury in a road traffic accident. Before his accident it was his goal to pursue a career in the British Army. This was no longer possible. With the support of his legal team and case manager, Rodney is now considering a different career route in joinery. It is his goal to secure an apprenticeship and one day have his own joinery workshop where members of the public can visit him and admire his creations. Career redirection can often be very challenging for 32


References (1) https://www.thevaluable500.com/ (2) Craig B Roberts 1, Bernardus R Coetzer, Helena C Blackwell Is performance on the Wechsler Abbreviated Scale of Intelligence associated with employment outcome following brain injury? (3) In accordance with the Equality Act 2010. (4) Robert J. Sbordone (2001) Limitation of neuropsychological testing to report the cognitive behavioural function of personal with brain injury in real world settings. NeuroRehabilitation 16 (2001) 199-201

INSIGHT

individuals to consider, especially those who have spent many years financing and studying towards a specific type of job, or who have already spent many years developing their craft, expertise and knowledge to then have to consider doing something completely different. Career redirection requires a coordinated approach with a focus on producing the best outcome of the individual. It involves combining the respective skills and experience of various professionals to create a dynamic multi-disciplinary team who can empower the individual to think of a new career route that will be enjoyable and rewarding. Introducing an experienced brain injury case manager and neuro rehabilitation specialists at the earliest opportunity can make the difference between optimal recovery, and a substandard outcome. Introducing vocational rehabilitation to support the individual to return to work, if they are able to, is crucial. The benefits of returning to work include a financial income, increased self-esteem and confidence, structure and routine, social interaction and a sense of purpose. The research supports the utility of neuropsychology tests to determine cognitive deficits following a brain injury and to help predict the likelihood of a return to work. However, further tests in a real-world setting, discussions with employers and the multi-disciplinary team, an analysis of the type of job the individual is returning to, the working environment and culture, and the skills to perform the job, are of even greater assistance in the vocational rehabilitation process (4). Also vital is finding a disability confident and inclusive employer who understands and recognises the benefits and experience disabled employees can bring and offer their company, and who works hard to recruit and retain a wider pool of talent. The Equality Act 2010 prohibits discrimination against those with a protected characteristic, one of which is disability. In the experience of Mark mentioned earlier, his condition would fall into the legal definition of disability, meaning any employer should not treat him less favourably as a result of his disability. Sadly, this is often not the reality. The Brain Charity’s employment team advocate for jobseekers with brain injuries and other neurological conditions to ensure people like Mark get the support they need in the workplace and are not discriminated against. They also train employers to ensure their processes are as disability-friendly as possible. 33

CEO Nanette Mellor says: “One simple way to attract and support a neurodiverse workforce is job carving – identifying and retaining critical elements of job descriptions, whist removing often-overused stock phrases such as ‘team worker’ or ‘presenting skills’ as these may put off candidates with conditions such as autism and anxiety. “Creating an environment where disclosure is open and encouraged and providing part-time and hybrid working opportunities, flexibility with hours and the possibility of job-shares are also important. “Another key consideration is supporting employees to apply for government Access to Work funding, which can cover anything from travel expenses, specialist equipment and desk furniture to personal assistant support in the office to assist with emails and organisation.” Protection for people with disabilities also applies to applying for jobs, and employers are required to put in place ‘reasonable adjustments’ to create a level playing field at all stages of their hiring and employment process. Nanette adds: “This may include giving people more time to prepare for interviews and an idea of questions in advance, offering virtual alternatives if travel is difficult and using specific neurodiverse job boards when advertising for roles.” The commitment, dedication, planning and attention required by a legal team and rehabilitation professionals to help a client achieve a return to work should not be underestimated. Our clients often comment that returning to work is one of their most important and proudest achievements. The sense of empowerment, hope and joy this milestone creates can be exhilarating and very rewarding – and it’s something we, and The Brain Charity, are committed to advocating on their behalf.

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Head Injury in Sport

Special Report Sport being able to “mark its own homework” is a “dereliction of duty which must change”, the head of the committee which led Parliament’s recent inquiry into head injury in sport said.

Julian Knight MP said the committee was left shocked by evidence from athletes whose future health was put on the line in the interests of achieving sporting success. In the committee’s report - which followed evidence from 27 clinicians, academics, campaigning organisations, sports people and representatives of sporting associations, alongside 51 further written submissions the reality of the situation in sport was laid bare. Each sport is left to determine its own protocols for concussion and brain injury, it noted; those playing sport do not have enough information about head injury and its long-term consequences; there are no standardised procedures and data collection is poor; and there is a lack of transparency in published research funding and research evaluation. “We’ve been shocked by evidence from athletes who suffered head trauma, putting their future health on the line in the interests of achieving sporting success for the UK,” said Mr Knight. “What is astounding is that when it comes to reducing the risks of brain injury, sport has been allowed to mark its own homework. “The Health and Safety Executive (HSE) is responsible by law, however risk management appears to have been delegated to the National Governing Bodies, such as the Football Association (FA). “That is a dereliction of duty which must change.”

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The recommendations made by the report are: • The Government should establish UK-wide minimum standard definition for concussion that all sports must use and adapt for their sport • The Government should deliver a comprehensive communications campaign to ensure all those involved in sport can access best practice information. This should signpost people to advice on what action to take • HSE should work with National Governing Bodies of all sports to establish a national framework for the reporting of sporting injuries • UK Sport should take a governance role in assuring that all sports it funds raise awareness of the dangers of concussion effectively • UK Sport should pay for a medical officer at every major sporting event with responsibility to ensure the safety of participants and the power to prevent athletes at risk from competing • NHS England should review the way it collects data about concussion and concussion-related brain injury • NHS England and the Faculty of Exercise and Sports Medicine should prepare a learning module on best practice for treating and advising those with concussive trauma and ensure all GPs and A&E clinicians take this module within 2 years • The Government should convene a single research 34


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government takes note and acts quickly on all the recommendations.” Peter McCabe, chief executive of Headway, which has run its Concussion Aware campaign for many years, added: “The committee’s criticism of governing bodies in sport is clear. This issue is not new and yet for years sport has been able to play down its significance, with little or no scrutiny from the Government. “For too long it has been left to charities such as Headway to hold sport to account and we agree with Julian Knight that this has to change. Sport has had long enough to get its house in order and the time has come for the Government to intervene. “It has been almost 20 years since a coroner recorded a verdict of industrial disease in the case of former England and West Brom footballer Jeff Astle. In any other industry, that would have led to greater scrutiny from the Health and Safety Executive, but sport has been allowed to govern itself and we have been seeing the consequences for some time. “The ball has been repeatedly dropped by sports authorities when it comes to concussion. It’s now been passed to the Government by means of the recommendations of the DCMS Committee and we will be watching carefully to see how seriously this report will be taken by the Government.”

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fund to co-ordinate and fund research to ensure it is independent and excellence-driven as well as being accessible to all • The Government should convene a specialist group on concussion drawing on campaign groups and relevant scientific expertise. The report’s recommendations were welcomed by campaigners who have long fought for change in how head injury is dealt with in sport. Dr Michael Grey, reader in rehabilitation at the University of East Anglia and UKABIF Trustee, who gave evidence at the inquiry, said: “We are encouraged that the committee have accepted (repeated) our call for sport-related ABI research that is both independent and transparent; and for the need to upgrade health professionals’ knowledge in this area. We welcome the call for Government to take a leading role in this regard.” The report’s recommendations closely mirror those made in the All-Party Parliamentary Group for ABI’s Report, Acquired Brain Injury and Neurorehabilitation: Time for Change, which was published in 2018. Chris Bryant, MP and Chair of the APPG for ABI, said: “I’m delighted that the committee agrees with the argument we have been making for some time. The evidence grows ever stronger that we need to take concussion in sport far more seriously. I hope the


Special Report

Having played an instrumental role in initiating changes to player safety in NFL, Dr Chris Nowinski speaks to Deborah Johnson about the urgency to ensure that is replicated elsewhere in the world, from professional through to grassroots level, and how his creation of a UK Brain Bank is upping the ante on research in this area even further

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Having experienced concussion during his career as a high-profile WWE wrestler, and been left shocked by the lack of awareness of the issue at all levels of sport, Dr Chris Nowinski is now leading the charge for change for head injury in sport around the world. Since 2007, Dr Nowinski has pushed the boundaries of what had become accepted as ‘the norm’ in sport that there was ‘glory’ in players getting up and carrying on despite head injury; that there was no accepted correlation between multiple head impacts and longerterm neurological consequences; that sport was not taking more responsibility in protecting its players and is helping to redefine the life-changing issue of player safety. And through the efforts of Dr Nowinski and his Concussion Legacy Foundation, significant change has taken effect in the United States, particularly in the National Football League (NFL), which was “embarrassed into action” through his 2006 book Head Games: Football's Concussion Crisis. The book, which also became a documentary, examined the long-term effects of head trauma among athletes, and was described by The Lancet as having "sent shockwaves through NFL”. The Foundation was also instrumental in the creation of the world’s first Brain Bank dedicated to the study of Chronic Traumatic Encephalopathy (CTE), which has led to the long-held understanding of brain trauma being revolutionised.

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THE FASTER WE ACT, AND IT’S VERY URGENT WE DO THAT, THE LESS WE WILL SEE WHAT IS IN THE NEXT GENERATION OF SPORTS PEOPLE

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HAPPENING TODAY

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Through its pioneering research, the VA-BU-CLF Brain Bank remains the most significant CTE resource in the world, which has discovered the first cases of CTE in athletes whose primary exposure was soccer, rugby, baseball, ice hockey, and college and high school football. “In the US our understanding of concussion has changed completely. When I was injured, they were still putting people who had been knocked unconscious back into the game, saying they’re fine,” Dr Nowinski tells NR Times. “Through advocacy, we started to change the discussion and show how unethical it was to put someone back into the game. We focused on NFL because if we get them to change, then everyone would change. “There are now laws in every state which mean medical clearance must be given to players with concussion

WE NEED TO STOP HITTING CHILDREN IN THE HEAD. WE HAVE YOUNG CHILDREN PLAYING SPORT BY THE SAME RULES AS ADULTS AND THAT’S INSANE. NRTIMES

allowing them to return, we now tend to talk about concussion in the right way - in European soccer we see players being knocked unconscious, like we did in the recent UEFA tournament, but that doesn’t happen in the US anymore without a massive outcry.” And while such an ‘outcry’ has not been widespread in sport elsewhere in the world until more recently, happily change is starting to take effect, with the UK now seeing action like never before. Both football and rugby governing bodies are introducing new protocols, spurred into action by the many former players who have revealed devastating diagnoses of neurodegenerative illness. Dr Nowinski and his team have worked closely with the Astle family, who are campaigning for change in memory of footballer Jeff Astle, whose memory continues through the Jeff Astle Foundation which is dedicated to raising awareness of brain injury in all sports and offers support to those affected. The willingness of the many sports professionals and families who have played their part in lifting the lid on the reality of brain injury in sport is crucial in bringing about change in sport, even where there may be resistance, says Dr Nowinski. “I am amazed at the courage of families who are saying their loved one has dementia, without the steady drum beat of such stories this could be swept under the carpet

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I’VE HAD THREATENING LETTERS FROM UK FOOTBALL TEAMS

UNIQUE DISEASE UNDER THE MICROSCOPE AND SHOW HOW IT IS DESTROYING THE LIVES OF ATHLETES NOW. 39

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WE WANT TO CREATE UNDENIABLE PROOF AND SHOW THIS

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again,” says Dr Nowinski, a Harvard graduate who later gained a PhD in neuroscience. “People think this problem doesn’t exist because we don’t see it, but families previously chose to keep it private as nothing positive had ever happened before through going public. “If we continue to push the rock up the hill and continue to fight for change, it will happen. To change a culture, you have to know the culture. “I don’t recall any recent players being knocked unconscious and being put back in saying ‘I shouldn’t have been put back in the game’ and that needs to happen - but there is bad leadership within the football community and players feel without protection. “There are a lot of studies in the US linking head impacts to brain disease which are well-known, but people outside the US tend to ignore them. There is always a scientist who will say they’re not sure about the findings, or we don’t know if the changes we’re seeing are permanent.

“In the US, there are some very outspoken doctors who represent professional sports leagues and they focus on minor criticisms to justify inaction, rather than the clear solution of preventing the hits to head that cause brain injury. “While these doctors do their best to have their patients’ best interests in mind, even the most ethical doctors will be influenced by their professional position, this can lead to tremendous conflicts of interest. “I’ve had threatening letters from UK football teams. In the US, it took journalists outside of sport to be willing to offend, and very powerful newspapers who don’t care if their reporters have been threatened to lose access to the teams they cover. “Professional sports leagues are incentivised to minimise the the risks of concussions and CTE as they pose risks to profits, and that has unfortunately also played out in the UK.” While the recent findings of the Parliamentary inquiry into brain injury in sport - where it was noted that governing bodies are effectively ‘marking their own homework’ - are encouraging, says Dr Nowinski, action must be taken and lessons learned. “The Government has a huge role to play and the most recent hearings are a good start,” he says. “In 2009, things started to change in the US when the NFL were embarrassed into taking action through public Congressional hearings, and we realised if we continue in this direction, we can help to get the change we need. “One of the important things we did was to explore how the NFL’s Mild TBI Committee was doing terrible research and we got that committee to be retired. “This issue needs to be looked at independently - it’s a public health issue and we are still only scratching the surface.


IF WE CONTINUE TO PUSH THE ROCK UP THE HILL AND CONTINUE TO FIGHT FOR CHANGE, IT WILL HAPPEN

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PROFESSIONAL SPORTS LEAGUES ARE INCENTIVISED TO MINIMISE THE THE RISKS OF CONCUSSIONS AND CTE AS THEY POSE RISKS TO PROFITS, AND THAT HAS UNFORTUNATELY ALSO PLAYED OUT IN THE UK NRTIMES

“This isn’t just an issue of dementia, where people lose a few years off the end of their lives but they got to be a hero as a sports player - we’re not recognising the danger of this disease to people in early- and midlife, and that limits motivation for people to change.” A vital place to start is in protecting players from the very start of their experience of sport - from childhood. The Concussion Legacy Foundation adopts a stance in the US of encouraging parents not to expose their children to tackle football or any repetitive brain trauma, including heading in soccer, until the age of 14. “We need to stop hitting children in the head,” says Dr Nowinski. “We have young children playing sport by the same rules as adults and that’s insane. We should be focused on what is best for children, they need exercise, not hits to the head. “The odds of developing CTE are associated with how many years someone has been playing, and the correlation is extraordinary. We find it in boxing, we find it in American football, and we’re going to find it with soccer and rugby. “If we want to eliminate CTE in sports, then we need to reduce the number of years when they’re experiencing repeated head impacts as children. It is not the time when they’re an adult and they’re being paid to play. “If we reduce exposure among children, we can make it less likely they will get CTE. Right now, we assume we will only get better at dangerous activities by practicing those activities. That model, though well intended, is a mistake. “The faster we act, and it’s very urgent we do that, the less we will see what is happening today in the next generation of sports people.” Another important area is how concussion is portrayed in the forum where most people consume sport - via the media. The creation of the Concussion Legacy Foundation’s Media Project has helped to change the language used around head injury in sport, and in turn the perception of millions of viewers, particularly among the younger generation. “We have established the CLF Media Project in the US, which we’re now working on in the UK, we’ve done some work with professional journalists as well as students at university,” says Dr Nowinski.

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its first donation. And the pioneering impact is now coming to the UK with the creation of the Concussion Legacy Foundation UK led by Dr. Adam White of Oxford Brookes University, and a Brain Bank led by Dr. Gabriele DeLuca of Oxford University. Dr. White recently completed a research project into athletes and caregivers’ experiences of CTE, working alongside the Concussion Legacy Foundation and Boston University CTE Centre. The UK Brain Bank’s launch is accompanied by a 24-hour outreach hotline, education and peer support mentors and groups, with people also being connected with medics and clinics. “When we first started the Foundation, goal number one was to start a Brain Bank,” says Dr Nowinski. “Part of the reason concussion and brain trauma has been under the radar for so long is that there hasn’t been visual proof of damage. Without pathology, we can’t get this evidence. “We want to create undeniable proof and show this unique disease under the microscope and show how it is destroying the lives of athletes now. “We want the whole world to be working on this, the best scientists in the world, and we need this to be across the world if we want to have hope for treatment in our lifetime.”

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“It’s very hard to reach a lot of people on this issue, and their understanding of concussion comes from watching sport on TV. “This is an important moment in time. A few years back, the US media were still glorifying players playing through concussion, they weren’t using the word ‘concussion’ and broadcasters were pretending nothing was happening. “We wanted to help them with the terminology that can describe what is happening without being seen to diagnose anything. In the UK and Europe, we see players playing through concussion, like in the recent UEFA tournament, and we don’t want these poor examples to parents and coaches to manifest into poor concussion care for children because the inappropriate medical care isn’t being criticised. “There can be a backlash against commentators because television is a business like football, but we hope to give broadcasters the tools they need to cover concussion right.” But underpinning the change is the research, which continues to be fundamental in greater understanding of, and action around, brain injury in sport. Following the huge advances effected by the creation of the VA-BU-CLF Brain Bank, collaborations have since followed with the University of Sydney, which has collected 30 donated brains in the past three years, and the University of Auckland has just received


Special Report

The shocking impact of contact

Head Injury in Sport

The impact professional rugby can have on players’ brains in just one season has been revealed in a hugely-significant new study. Professor Damian Bailey, who led the project, discusses how further research is set to expose even more of the unseen effects of the sport on young and old players alike Shocking new research laid bare the reality of the head trauma rugby players can face in just one season, with reduction in blood flow to the brain and decline in cognitive function seen among an entire team of professional players. The pioneering study has helped to widen the focus on player safety beyond concussion and into the cumulative effect of contacts, highlighting that it is not just blows to the head which can result in long-term neurological consequences. The research, by the University of South Wales (USW), found that cognition decreased across the season in both forwards and backs, although there was a greater

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degree of impairment seen in the forwards than in the backs players. Concussion incidence also appeared to be three times greater in the forwards compared to the backs. The research, which followed a team from the United Rugby Championship, examined the effects on the brain function and cognitive ability of the rugby players, which included the ability to reason, remember, carry out mental tasks and formulate ideas. The peer reviewed study, funded by the Royal Society Wolfson Research Fellowship, recorded six concussion incidents among all the players that took part over the course of the year - but other studies have suggested

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professional rugby players could be exposed to 11,000 contacts each season. Every player who took part showed evidence of decline when comparing pre and post-season results. “There is a need to reduce contact in training or the game, not just to act on concussion and introduce reactive changes,” Professor Damian Bailey, head of the Neurovascular Research Laboratory at USW who led this research, tells NR Times. “The field has become polarised towards concussion but it’s the contact that really matters. It’s like in a road traffic accident where whiplash can cause brain damage - it doesn’t necessarily involve concussion. “It’s still in the early days but has highlighted the need for more research. It’s like an onion where you are peeling away the different layers, then you can attack the next layer then the next.” While the study focuses on professional rugby, many are drawing comparisons with the likely effects on amateur players - while research has not yet been carried out into this, Professor Bailey believes this is a great concern. “Much of the concussion surveillance focuses on the professional game, but we are looking beyond that,” he tells NR Times. “The arguments in the amateur game are ying and yang; amateur players are not as well trained, not as

big, powerful or fast, so the impact of contact could be considered lower. “But against that, 52 per cent of concussion risk is during a tackle, and in amateur rugby, a lot of problems can occur through contact. Poorer technique could result in more damage. “For me, school children are a particular concern with young developing brains, whether male or female, being even hungrier for the fuel of oxygen and glucose, so they’re more vulnerable to mechanical damage.” Now, Professor Bailey is planning to uncover more evidence of the impact of head injury in sport with further research underway. This includes a study into the effect of contact and young people, and a pioneering project to look at the impact their rugby careers have had on retired players, which will be released in the near future. “We need to understand the later life changes in the mechanism of the brain as a result and have completed a study in retired players where we compared and contrasted against age-matched controls,” Professor Bailey reveals. “That will give us a snapshot into how does contact in the game over several years translate into later life brain function. It is another big piece of the puzzle we need to answer.”


VR - a viable alternative to heading Special Report

Pioneering VR technology is helping to provide a solution to the damaging impact of heading a football through recreating training via a headset.

Head Injury in Sport

Through the creation of professional-level training drills, Rezzil has devised a credible alternative to physically coming into contact with a ball outside of a match environment. In use from academy level upwards, with European League and World Cup winners being regular users, Rezzil’s range of training drills has seen it become the world’s leading platform for helping elite athletes to develop their skills, having started in football and now diversifying into basketball and American Football. But with its more recently-added programme specific to heading, Rezzil’s role has been widened from sharpening skills and building resilience to a vital and growing role in player safety. Recent data from a UEFA heading study highlighted that training was where the majority of heading incidents took place, with Rezzil able to recreate a training ground environment via headset and alleviate the many physical impacts a player would routinely take. The team has worked with some of the world’s top coaches to create drills to head the ball safely in a VR environment, by heading from the waist like an elite player would do, rather than with the neck or the top of the head. “We spent six months working on a really comprehensive piece of research into heading impact, which looks at heading the ball and how that impact

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could be mitigated through using technology,” reveals Andy Etches, co-founder of Manchester-based Rezzil. “Using a control method we have seen a reduction in heading a real ball from 20g to 5g in VR. When you think of a player’s brain rattling around in their skull, that is a massive saving in impact.” Research by Professor Willie Stewart has previously revealed that footballers were three-and-a-half times more likely to die of neurodegenerative diseases including dementia and had a five-fold risk of Alzheimer’s. This was supplemented by his more recent shocking findings which showed defenders had a fivefold risk, in comparison to goalkeepers, whose risk was the same as for the average person. The length of their playing career was also found to be crucial, with those playing for longer than 15 years being

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USING A CONTROL METHOD WE HAVE SEEN A REDUCTION IN HEADING A REAL BALL FROM 20G TO 5G IN VR. WHEN YOU THINK OF A PLAYER’S BRAIN RATTLING AROUND IN THEIR SKULL, THAT IS A MASSIVE SAVING IN IMPACT Special Report Head Injury in Sport

five times more likely to develop neurological conditions. And with many now questioning whether heading should continue to play a role in football, given the significant concerns around safeguarding players, the Rezzil system is delivering benefits to a player’s entire game through its system, which operates via an Occulus Quest VR headset, and has recently been commercially launched to the mass market. The company is currently mid-way through further research, but indications are that it could even improve the standard of training.

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“It can be more effective, quicker, and a player can have multiple contacts with the ball,” says Andy. “In reality, a player can only head the ball a certain amount of times - but in VR, we are multiplying the contact with the ball by 100, but that’s because it’s in a virtual environment. We are reducing the amount of times you make contact with a physical ball, which will have a knock-on effect. “And through the use of VR, it’s about the heading, fitness, co-ordination, fun - that’s the whole idea of what we do.”

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Gathering the real-time data to ensure player safety Special Report

The PROTECHT mouthguard has been hailed as having a vital role to play in player safety. Dr Chris Jones, Head of Science and Performance at SWA, discusses its growing presence in sports including top-level rugby and football

Head Injury in Sport

The PROTECHT system is a live load management tool that accurately measures the volume and intensity of contact events, by embedding sensors in mouthguards worn by players which transmits the head accelerations undertaken by the athletes in real time. This allows practitioners to objectively understand the demands of the competition and manage contact training for the first time. PROTECHT is so effective because it was developed by practitioners, for practitioners. Not only are we at the forefront of technology and research where we work with governing bodies and universities, but the biggest factor is that as practitioners looking after athletes, we understand the importance of measuring contact and its impact on recovery, fatigue, welfare and performance. Being able to measure, manage and manipulate contact in real time allows us to optimise athlete readiness and availability which will ultimately improve overall squad outcome. As a company we are very proud of what we have been able to achieve in a very short space of time. You look at the work we have been able to do in rugby, football and combat sports where we are paving the way in providing objective evidence to governing bodies and individual clubs and athletes that has already significantly impacted how these athletes are trained and managed. For example, in rugby, SWA were tasked by the RFU with a discovery research project to evaluate the level of

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head impact exposure in elite men’s and women’s rugby in England over a month. We were able to successfully conduct and complete this project and provide the first detailed description of head impact exposure during elite adult rugby training and matches. This not only demonstrated the feasibility of the instrumented mouthguards but helped identify future projects that need to be conducted. For example, the ruck provided the biggest risk of head impact exposure in both training and competition and this is now an area that will be the subject of further investigation from the RFU. This is in addition to the RFU expanding to a leaguewide project across both the male and female game. In football, we were commissioned by the Premier League to help understand the head acceleration involved in headers taking place during training sessions. We were able to measure not only the intensity of the forces experienced by the athletes performing a header, but we were also able to group headers based on their preceding event. For example, headers from crosses, long balls, passes, throw-ins; and headers from a standing position, running forward or backwards, etc. This information was provided to a cross-football working group, helping to shape the Heading in Training Guidance that all clubs now follow when undertaking headers during a training week. It is well documented that concussion has been an issue or a challenge that needs to be addressed for a long

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period of time. It’s why we developed the system in the first place. We would say it is being taken seriously, but that until recently there had been no means of accurately measuring such an important factor in sport. In addition, the increased exposure in the media and greater amount of research being conducted in this area really helps to tackle and accelerate the understanding of these issues and potential future solutions. We have a number of success stories from the last few years. The biggest one is the work we have been able to do with Gallagher Premiership champions Harlequins, who have really pioneered and paved the way in how they manage the contact load for their players, through utilisation of the PROTECHT system. Not only were we able to collect and measure the demands placed upon them for a number of research projects, but they were also able to use the performance element of the system (contact management of the athletes). This enabled Harlequins to use the PROTECHT system to adjust and manage the amount of contact a player receives in training and has significantly reduced the amount of injuries in the squad, and significantly assisted towards their success.

WE ARE PAVING THE WAY IN PROVIDING OBJECTIVE EVIDENCE TO GOVERNING BODIES AND INDIVIDUAL CLUBS AND ATHLETES THAT HAS ALREADY SIGNIFICANTLY IMPACTED HOW THESE ATHLETES ARE TRAINED AND MANAGED

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The legal position around neurotrauma in sport Special Report

By Tracey Benson, Head of Serious Injury (South), Slater and Gordon

Head Injury in Sport

Traumatic brain injury in sport is becoming increasingly widespread in certain jurisdictions. The USA and Australia have seen extensive litigation instigated by former professionals against various institutional defendants. The most famous being against the US NFL by 4,500 former American Football players culminating in a settlement. Claimants seeking recompense are typically suffering from neurocognitive injuries caused by repetitive exposure to mild traumatic brain injuries, commonly known as concussion. The long term effects are earlyonset dementia, or chronic traumatic encephalopathy. In December 2020 a letter of claim was delivered on behalf of a group of former professional rugby players against the RFU, the WRU and World Rugby. The 9 players concerned will proceed to a test case which will determine whether there is any liability on the part of the governing bodies to the Claimants in relation to the brain injuries they sustained during their professional careers. Essentially the allegations relate to failure by the Defendants to take reasonable care for their safety by

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establishing and implementing rules and regulations to tackle the issue including the assessment, diagnosis and treatment of concussive injuries during matches and training sessions. They allege that given the significance of the risk of serious and permanent brain damage it was negligent of the defendants to fail to take steps to reduce the risks which were known and foreseeable at the time. Obviously this is a highly physical contact sport and the issues to be considered are extremely complex. The basic principles of English Law will apply in relation to the tort of negligence. This tort allows a Claimant to bring a civil claim for compensation against one or more Defendants.The 3 hurdles in order to succeed are as follows:

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• The Defendant(s) breached that duty of care - the onus is on the claimant to prove that the standard of care fell below that required by the law – the standard being that of a reasonable person in the particular circumstances So the Court will need to decide what a “reasonable governing body” should have done taking into account the knowledge available at the time and the severity of

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harm if they failed to take action and other important factors such as the overall impact on the sport generally for example. The key to this hurdle will be linked to the expert medical opinion and research and statistics which arguably date back to the early 1970s. The court will need to consider what actions could and should have been taken but linking into point 3 below. • The breach of that duty caused the injuries and loss and were foreseeable The expert evidence from the medical profession, coaches, players, officials will be key as to whether it can be proven that any “breaches” were responsible for the current position the ex-players now find themselves in given the physical nature of the sport. I suspect this will be the most complex part of the litigation and linked to a vast amount of medical and sport science research.

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• The players were owed a duty of care - without a duty of care there can be no claim It is difficult to see how the governing bodies and potentially clubs (who may become involved as employers) would not owe a duty of care to take reasonable care to protect the health and safety of rugby players. They create and enforce the mandatory regulations and have the knowledge in relation to all health risks including head injuries so it would seem entirely just to impose this duty.


Special Report

The first football match which involves no heading of the ball has a vital role in raising awareness and stimulating conversation about the impact of head injury in sport, its organisers have said.

Head Injury in Sport

The 11-a-side match, involving 25 former professional footballers, has been hailed as an experiment as researchers try to discover whether the game can function without heading, in light of evergrowing research which links football to neurodegenerative disease. Organised by Head for Change, the charity helping to drive forward calls for changes to player safety, the match allowed headers in the penalty box for the first half and then restricted all heading during the second half. The event forms part of the “legacy” for former Spennymoor Town and Middlesbrough defender Bill Gates, who has sports-related dementia, and whose wife Dr Judith Gates is co-founder and chair of Head for Change. “When Bill received his diagnosis in 2017, we made two promises to him,” Dr Gates tells NR Times. “One was to optimise his life and do all we could to make his life as good as we could as a dad, grandad and great grandad, and the second was for his legacy, to do everything we could to be part of the solution for future generations of footballers and their families not to have to face this. “The purpose of this match is to raise awareness of the dangers of heading the ball and to provide alternative discussion with purpose. It’s an experiment to see what the game will look like. “To be clear, Head for Change is not suggesting

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heading should be banned, that is a decision for football’s governing authorities, not for us. “But we want people to realise the impact. Bill was a Titan to me in his 20s, fit and indestructible, so if this disease can do this to him, it can happen to anyone.” The match has attracted widespread media attention and comes after an array of stark academic findings, including the research from Professor Willie Stewart that footballers are up to five times more likely to suffer from dementia than the general population. “Part of why I co-founded Head for Change was to be part of the solution,” says Dr Gates. “We’re extremely aware that there is a lot of bashing going on and everyone is saying it’s someone else’s fault, but lessons must be learnt from the past. “For too long we have been assured that our brain was safe in our skull, but we are increasingly understanding how the brain works and how it can be damaged through contact sports. Education will continue to play a very important role in what happens going forward.” The match itself – which will also be raising money for The Solan Connor Fawcett Cancer Trust – was held at Spennymoor Town’s stadium, The Brewery Field. The town is where Dr Gates grew up and met her husband, and in a quirk of fate, Spennymoor Town’s chief executive Brad Groves used to work for Bill as a warehouseman when Bill owned a chain of sports stores.

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INSIGHT

Who am I? Self-identity following an Acquired Brain Injury Dr Anita Rose, Consultant Clinical Neuropsychologist, The Renovo Care Group

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INSIGHT

Who am I? Arguably life’s most defining problem. The answer as we all know is identity. But this is not the complete answer because “who I am”, my identity, is an all-encompassing system of memories, experiences, feelings, values, roles, thoughts and relationships. When I am asked who I am my answer is likely to be multi-faceted and the answer will depend on the situation I am in. I might say. I am a mum, a wife, an Ouma (Grandmother), a sister, a Clinical Neuropsychologist, a friend, a regular church goer and so the list goes on.

This question permeates my working life as I sit with patients who want to know who they are now, how they can be who they used to be. They are scared, frustrated, anxious and believe that they can no longer be “me”. They face what the world calls an “identity crisis”. They are looking backwards prior to the traumatic, sudden, life changing experience they have gone through to this moment in time, to now after the brain injury. This exploration highlights a gap, the gap between who they were before to who they are now. It is this gap that leads to the questions of “Who am I now?”, “What can I do now?”, “Where do I fit in?”. Prior to their injury they had roles, “identities”, felt valued, helpful, independent, and confident in their life’s purpose. But now they report feeling lost, useless, frightened, insecure, stupid, lazy, and unreliable. The gap seems insurmountable as they will report feeling they have gone from being kind, caring, and happy, to angry, sad and being a burden. These feelings are driven by the comparison of self-perceived capabilities pre- and postinjury. Such comparisons lead to the experience of “I am not me anymore” as the brain injury at a deeper level alters the sense of self and the qualities that define who they once were.

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When I first started working in neuropsychology many years ago, I found the concept of loss of identity a real challenge. How can I support those whose lives have been dramatically changed “in an instance”, who maybe now very physically disabled and cannot return to their employment, their sport, their previous life? I noted that many times individuals would turn to those around them to feed their self-worth. They would seek reassurance and praise from others to feel okay about themselves. Whilst in the moment such validation might support their emotional wellbeing, dependency on external validation is extremely detrimental. Often patients would be perceived by caregivers as presenting with behaviours that challenge because they might be seen as demanding, for example constantly buzzing their call bell for reassurance. The reality is that sense of self should not come from other people but come from within. The most important relationship we can have is with ourself. Over the years of Clinical Work, participating in research and listening to my patients stories I have learnt that the only way to support a person to develop that new sense of self is to recognise each patient brings with them their own unique life history, values and social context. I have found that for

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INSIGHT

many of my patients it has been about working together in a collaborative and supportive therapeutic relationship, a collaboration where the individual in is the centre. Based on mutually agreed goals we start out on a journey of rediscovery. The initial stages of the journey are about grief and loss and enabling someone to express their grief and being given permission can be very powerful moment. The next stages are often around building awareness of the results of the brain injury as much raising self-awareness of the “me before” and the “new me”. What is different? What is still the same? Can we build the bridge between the 2 parts of “Me”? Moving along the journey we start to look at the most important relationship in their lives, the one with themselves. When self-identity is challenged the ability to be compassionate towards one’s self is reduced. Finding news ways to promote self-compassion i.e. kindness and understanding towards one’s self can support the individual in finding meaning in their lives and achieve their personally valued goals. Kenneth Gergen (1991) said “one’s identity is continuously emergent, re-formed, and redirected as one moves through the sea of ever-changing relationships. In the case of ‘Who am I?’ it is a teeming world of provisional possibilities.” The journey can be full of mountains and valleys, monsters to face but in my work at Renovo Care we recognise the various challenges these cause both the individual and their families. We appreciate the need for a directed multidisciplinary approach to work collaboratively with our patients by supporting them to re-engage in meaningful activities and to find meaning in their life following their brain injury. In other words, we are trying to re-establish

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the “bridge” across the gap between old and new. We support the patient along the journey leading to the “new me” after brain injury and look at how a comprehensive IDT evaluation and treatment of the “damaged sense of self” can lead to increased self-esteem, self-efficacy, and selfempowerment. All this leads to an improved quality of life for both our patients and their families. But to end it is the patient voice that speaks the loudest. A recent patient after going through this journey spontaneously said in his last session, whilst leaving the therapy room, “I have re-found myself”. He may still be profoundly disabled as a result of his brain injury and not met his original goal to walk again, but he has found an identity, a new sense of self that has emerged and reformed as he has found reconciliation between his self “before” and his “new me”. A bridge has been built across the gap. It is for this reason that I find my role, and the role of the IDT (Interdisciplinary Team), in neurorehabilitation so fulfilling. As a patient learns to be self-compassionate, moves towards reconciliation and acceptance of the “new me”, regardless of whether or not their original goals have been met, the end of their rehabilitation process has been positive as they leave feeling empowered and able to believe they have a world of “teeming provisional possibilities”.

I HAVE LEARNT THAT THE ONLY WAY TO SUPPORT A PERSON TO DEVELOP THAT NEW SENSE OF SELF IS TO RECOGNISE EACH PATIENT BRINGS WITH THEM THEIR OWN UNIQUE LIFE HISTORY, VALUES AND SOCIAL CONTEXT 54


Sleep Unlimited Ltd.’s team of experts specialise in helping children and adults with complex problems following life changing injury. Sleep problems have a significant negative impact on effective rehabilitation – but most sleep problems are amenable to change, and evidence shows that helping clients to sleep better will improve compliance with other therapies and have widespread benefits for both the client and their families/carers. We work remotely and safely across the UK, using evidence-based methods for our non-invasive actigraphy and oximetry assessment in the client’s home, treatment, training for healthcare professionals and expert witness work.

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INTERVIEW

Becoming one of a tiny number of businesses nationally to secure IiP Platinum status at the first time of assessment, Ariya Neuro Care is proud of its role in delivering outstanding care to ABI Service Users while also helping to raise the bar for health and social care workers. NR Times meets the company keen to push the boundaries of excellence

Investing in their people For most businesses, the thought of being assessed by independent regulators during the COVID-19 pandemic would be something that would fill them with dread but for Ariya Neuro Care, it was something they actively sought. And their confidence in their offering has proved to be entirely correct, with Ariya securing the Platinum award from Investors in People (IiP) at the very first time of assessment - becoming one of a handful of companies from any sector to secure such a feat. The company, founded six years ago, operates a supported living service for ABI service users across South Yorkshire with two residential transitional services in Rotherham and Barnsley. Its community programme and seven-bed Clifton Court site in Rotherham were both rated Outstanding by CQC at the first time of assessment - but with its site in Barnsley opening in early March 2020, no inspection has been possible due to the ongoing impact and restrictions of COVID-19. However, keen to demonstrate its unfaltering commitment to the highest standards for service users and their families, which continued despite the unprecedented challenges brought by the pandemic, Ariya invited scrutiny from IiP to independently confirm the quality of their service. Lucy Fallon and Paul Constable, who founded Ariya after lengthy careers working in health and social care, believe

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their award is testament to the outstanding work of their team, whose development they continue to invest in. “We weren’t being inspected by the CQC during the pandemic so we thought it would be good to get an external benchmark and see things we could improve on, as well as to celebrate the work of our staff,” says Lucy. “We were absolutely committed to maintaining and improving our quality and standards, we didn’t just want to firefight. We felt if we dropped the standards during lockdown, we’d have to work even harder afterwards to pick it up. “When we were being assessed, we were asked what we think our difference is. Anyone can say they are a good company to work for, but what we value our staff as professional people and support them. “Health and social care is often undervalued but these people are behind the delivery of really amazing services and they deserve to be invested in and not to be treated as a commodity, or seen as just a number. Often, these people don’t get the respect they deserve, but health and social care is very skilled work. “We have a really strong emphasis on our people and the development of our team, and that is what we believe has made the difference. As care providers, we all have a role to play in raising the bar.” With an 80-strong team working across South Yorkshire

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both in the community and in its two residential centres, Ariya’s service sees senior clinicians working with a team of social care workers to ensure its ABI Service Users are supported in their ongoing rehabilitation. For Lucy, who was inspired to establish Ariya with husband Paul after wanting more freedom from the restrictions of working in corporate care, the creation of a strong and committed team was fundamental from the start. “We wanted to focus our energy into providing local bespoke services, starting in supported living services and then moving into transitional community rehabilitation, as there was a real need for those kind of services - and the quality of your team is absolutely vital in delivering that,” says Lucy. “Paul and I have both worked in national jobs in corporates and we recognise the importance of valuing your team and creating the right ethos. From the start, we’ve made sure people have enough off-rota time, a lot of services are too under-resourced to do that, but we want our team to be able to do their jobs. “The danger in health and social care is that because we talk a lot about services being under-resourced, then it’s seen as being OK to be a bit mediocre - but that shouldn’t be the case, and if you look after your people, it is absolutely possible to have an exceptional team.” The willingness of the Ariya team to go the extra mile was highlighted during the pandemic, with everyone pulling together to deliver services as routinely as possible, as well as ensuring its new transitional rehabilitation service in Barnsley could open its doors to new clients. “We were blessed with the timing that the building work in Barnsley was complete, it was just some of the cosmetic work like the tarmac not being entirely finished, so we could support the neuro wards in the hospitals who needed placements,” says Lucy. “We went very quickly into lockdown after opening, and also had some of the families in our bubble so we could be sure their loved ones were as settled as possible. Our staff were very socially sensible and we were able to deliver consistency, which was down to their dedication and the sacrifices they made. “But self-isolation did of course cause some pressure points - I remember at one point we suddenly had 22 shifts to cover, but within a couple of hours we had a plan in place to cover it. We all did our bit, we were all willing to muck in, and Paul and I did shifts along the way.

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HEALTH AND SOCIAL CARE IS OFTEN UNDERVALUED BUT THESE PEOPLE ARE BEHIND THE DELIVERY OF REALLY AMAZING SERVICES AND THEY DESERVE TO BE INVESTED IN AND NOT TO BE TREATED AS A COMMODITY, OR SEEN AS JUST A NUMBER.

“I think because we’ve always ensured our staff weren’t doing ridiculous hours in the first place, they weren’t already on their knees when the pandemic hit, which is the situation a lot of providers faced. “I do think we all have a role to play in raising the bar in health and social care and how staff are regarded as professionals and I’m really pleased our role in doing this has been recognised.”

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COMMUNITY REHAB

Supporting the family support network A national initiative has been launched to help increase the support, advice and resources to families affected by acquired brain injury (ABI).

THERE NEEDS TO BE MORE SCAFFOLDING AROUND THEM, SO INSTEAD OF THE FREEFALL DOWN THE HOLE, THERE IS A LADDER FOR THEM TO GET BACK UP. NRTIMES

Anchor Point has been created to raise awareness of the needs of families of people with a brain injury, identify their unmet needs and deliver research, information and education required to make a positive difference. The Special Interest Group (SIG) unites professionals working in healthcare and academia across the country and has ambitious long-term plans about how to change the reality for the family support network whose lives are blown apart in the wake of a brain injury to their loved one. Among the initiatives Anchor Point hopes to introduce are the creation of a resource of patient stories to help and inspire others, a buddy mentoring scheme for families to give peer to peer support, and the creation of an education and resource pack to collate all of the resources a family affected by ABI may need. Anchor Point has been created by Dr Charlotte (Charlie) Whiffin, an adult nurse and senior lecturer at the University of Derby, after realising the significant gap in provision. “I did my PhD ten years ago and looked at the family experience of head injury and realised that nothing had really changed since then. There is some very good work being done where the primary concern is the injured person, but there is a need for something where the primary interest is the family,” Dr Whiffin tells NR Times. “It’s a really impossible situation for family members, and nothing is truly going to prepare them for their loved one being discharged from hospital, but at the minute it feels like an abyss for many of these families - it doesn’t have to be this hard. There needs to be more scaffolding

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around them, so instead of the freefall down the hole, there is a ladder for them to get back up. “Over the past ten years an increasing number of studies have looked at how family members are affected by the impact of acquired brain injury and their crucial role in neurorehabilitation and long-term support. It is now well recognised that the experience of family members can be complex and enduring. “Brain injury has a far-reaching impact on the family. The injury can be a life-long condition and for family members to provide the best possible care and support, they need access to accurate information. It is apparent that as health and social care professionals, we need to work together to pool our knowledge and experiences and improve the support available to families.” Anchor Point, supported by UKABIF, is aiming to bring about change through its working groups focusing on RIPPLES - resources, information, people, policy, life, education and support - which will bring together professionals to look at the improvements that need to be made. “We will look around the country and find where things are being done really well, we will map the pockets of excellent practice and want to work really closely with

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organisations to replicate that,” says Dr Whiffin. “We plan to grow organically and our aims will evolve every year in terms of what more we feel is needed. I’d love to create a resource to collate patient stories which cover the different types of brain injury and the different stages - the impact at one month will be very different to two years. “It’s also love to have a mentoring scheme to create support between families, where you can have a safe space to express how you feel to someone else who understands without judgement. While there may be other people outside of the family in the normal reliable support network, the impact of brain injury means that often doesn’t work anymore, so peer to peer support is very important. “Our ambitions for this are really big but are staggered across a number of years. The idea originated in Derby but we now have a national focus and would love to look internationally at some point - there is very good practice in Australia and America, which is the long-term goal, and there is particularly scope for international collaboration on research. “But for now, we are focusing our efforts here and hope to make a difference to the lives of families affected by ABI.”

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CASE MANAGEMENT

BABICM - rising to the post-pandemic challenges and opportunities in case management Vicki Gilman takes up the post of chair of the British Association of Brain Injury & Complex Case Management (BABICM) at a hugely important time as case management moves into a new post-pandemic chapter, following an unprecedented period where case managers rose to the diverse challenges presented by COVID-19 and helped to create a new future. One where technology and virtual communication will feature like never before; where the need to work in collaboration has never been greater; and where the creation of the Institute of Registered Case Managers (IRCM) will enable registration of case managers for the first time. While undoubtedly an exciting time with huge potential for case management, the challenges - and opportunities - for BABICM, as it too builds for the future on the foundations of its 25 years of expertise, are plenty. “Becoming chair was something that was first suggested to me about three years ago, and at that time I had no idea, as no-one did, that we would all see such huge change in our lives,” Vicki tells NR Times. “There were several things in the back of my mind then that I thought might be key themes - some of them remain the same despite what has happened since, although by no means all of them. I think a lot has been learned over the past 18 months that I don’t think we will

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go back from. So, in many ways, this marks a fresh start. “I’m immensely proud of how the whole case management sector responded, how we stepped up to the challenges and with such speed. Case managers are used to looking at complex scenarios in unique circumstances and working to find ways forward within the context of each case, The pandemic served up additional challenges which prompted a lot of innovation and different and new thinking, with plenty of opportunities. “As ever in case management we have taken the learning from everything we do, but this time case managers – along with everyone else - were juggling the unique changes in their own lives such as homeschooling children and supporting friends, neighbours and family members whilst continuing with their highly complex and confidential work to support each individual case by case.” Vicki, managing director of Social Return Case Management, takes over the BABICM chair from Angela

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Kerr, who is now chair of the IRCM. BABICM, as a founding member, will continue to play a central role in the ongoing development of the body, which hopes to secure accreditation from the Professional Standards Authority (PSA) in the near future. An experienced case manager, health entrepreneur and clinical specialist neurophysiotherapist, Vicki spent six years on the BABICM Council, returning last year for a preparatory period before taking the chair. Building on her experience of specialist rehabilitation, expert witness work and case management and being part of BABICM, while taking inspiration from the events of the past 18 months and impending future changes, Vicki has identified a number of priorities to address during her time at the helm.

Equity and belonging “I have starting educating myself to a greater degree and have had a lot of conversations with people who know a lot more than me about equality, diversity and inclusion., she says. This is actually quite challenging and I don’t personally know enough yet. I do know that both the organisation and I need to do more. As I go on my journey, it is my aim to find allies and to bring other people into learning more with me. Together we can make BABICM better place.” “It follows that our increasing membership means we have greater diversity, and it is not enough to say ‘We don’t discriminate’. Vicki says equity and belonging must be sentiments which underpin BABICM. “It is a really important to ensure a greater understanding is threaded through the work of BABICM.” "For me, equity means more than equality, and we want to help people feel they belong here. It’s not enough just to say these words."

I’M IMMENSELY PROUD OF HOW THE WHOLE CASE MANAGEMENT SECTOR RESPONDED (DURING THE PANDEMIC), HOW WE STEPPED UP TO THE CHALLENGES AND WITH SUCH SPEED

Collaboration “We need to strengthen links we already have and collaborate with other organisations who are important to our members through the work they do,” says Vicki. “Angela has done an amazing job to strengthen and move the organisation forward, of identifying organisations and allies we should be working in collaboration with and creating links with people at the right level - organisations such as the CQC, Court of Protection, UKABIF, some education establishments, to name but a few.

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“There are lots of ways we can deepen and develop on that, and as we come out of the pandemic there will be more opportunities. Zoom calls are really time-saving and effective, but hopefully we will also have the option to do things in person again going forward.”

The future as a profession with registration One of the most significant changes in case management, the creation of the Institute of Registered Case Managers (IRCM), is set to professionalise and regulate case managers in a sector-changing move. “We will continue to support the goals and development of the IRCM, it is by no means done and we need to continue the work here,” says Vicki. “We are fully supportive of the direction of travel and fully endorse registration for case managers. This is a way for the public to be protected specifically in the realm of case management and for case managers to be able to demonstrate that.”

Training and learning “I want to continue the development of the high-quality learning and training opportunities available to our membership, but also to those outside,” she says. “We aim to keep it very relevant to current clinical and professional needs, keeping ahead of the curve and making sure that what we are offering is of the highest quality. As professionals working with complex cases, I can only see that need developing further.

IN THE LAST FEW YEARS BABICM HAS REALLY SHOWED ITS STRENGTH AS THE LEADING PROVIDER OF EDUCATION AND TRAINING FOR CASE MANAGERS WORKING WITH COMPLEX CASES

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“In the last few years BABICM has really showed its strength as the leading provider of education and training for case managers working with complex cases. The feedback we’ve received for our courses has been tremendous and that has continued even during the pandemic. Training will remain key and grow in importance.”

Research “I’m very keen to increase the involvement of BABICM and its membership in research around case management related issues. I want us to lead the way in with research into evidence-based practice for people with complex needs,” says Vicki. BABICM has recently been involved in a number of research projects, working alongside the University of Plymouth. In yet to be published findings, the team has studied how case managers and clients alike have adapted to the pandemic. “There is research out there which supports the work of case management, but we are taking greater responsibility to add to that evidence base and that is something I foresee will increase and needs our members to be involved in, she says. “This will of course add even further to our library of resources to support the work of case managers.”

Providing useful resources to members “I see us to stepping up in provision of information to assist across our membership within legal, clinical and professional aspects of their work,” says Vicki. “Those involved in the case management of complexity and those working with case managers need resources that are tailored to their needs. “We already do this in many ways via our website with recorded webinar content, upcoming training and development events, publishing our standards and competencies and signposting and links to other sources of support regular bulletins. Our website is proving a very useful resource library which is seeing growing traffic, as it assists our members and others. “As our members apply for registration with the IRCM there will be an even greater requirement to demonstrate what case managers are doing and whether they are meeting the standards, so we need to continue to build relevant resources to support this need.”

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THERAPY

MATRIX Neurological provides practical help and vital support to children, young people and their families who are living with the effects of an acquired brain injury. Based in Middlesbrough and serving communities across the Tees Valley, South Durham and North Yorkshire, MATRIX Neurological is a lived experience led, registered charity, established by people that have first-hand experience of childhood acquired brain injury. Founded in 2014 by the mother of a young person who sustained a severe traumatic brain injury, Jan Rock knows all too well what families have experienced. That personal experience means they have a real understanding of acquired brain injuries and the complex ongoing effect it has on learning and everyday life; such as the difficult adjustment back into 'normal life’; the impact on every family unit; the negative effect it has on a child’s academic studies and future employment prospects; and the long-term negative health effects that result from a lack of understanding; and in-effective and uncoordinated support services. In 2010 Jan’s son sustained severe and complex polytrauma injuries that medical professionals considered to be unsurviveable. Incredibly, he did survive and following the standard physiotherapy and occupational therapy focussing on physical re-ablement, provided by the NHS, she realised this fell far short of what was needed; so, she and her husband researched and managed his ongoing rehabilitation needs and created their own rehabilitation interventions. She has been rapidly expanding her knowledge and understanding of acquired brain injury in children and young people ever since. After hearing Jan’s story, both families and medical professionals asked her to help other child brain injury families. In 2014 Matrix Neurological was founded with a

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paediatric consultant and another third sector colleague. Initially MATRIX provided Family Support for parents and carers because as one parent stated: “Basically, when you leave hospital, you receive very little information about your child. If you are lucky, you might receive some generic acquired brain injury information. I want to know about my child, not someone else’s! You are on your own and it’s a very stressful time. Education and social care professionals expect you to tell them what your child needs. How can you do that when you don’t even understand what has happened inside your own child’s head because nobody has explained it to you?”. Families also say that ‘support’ has a wide range of meanings to different people and organisations. Some think it’s about simply giving them a leaflet or the odd phone call. Many parents are unhappy with current provision; unsuitable mainstream referral pathways; infrequent appointments; and even a lack of understanding, by professionals, of the cognitive, emotional and behavioural impacts of brain injury, are issues frequently highlighted.

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In the absence of any other meaningful support, Families very quickly started asking MATRIX to support their children too. At the same time, other emerging research reports highlighted some shocking statistics and the prevalence of traumatic brain injury in young offenders within the secure estate and homelessness. Analysis shows that over 90% of diagnosed brain injuries are discharged from Accident and Emergency Departments, with no follow up. MATRIX therefore wanted to provide services that made ‘a real difference’ to people, rather than just ‘signpost’ or ‘tick a box’, following Jan’s own experience. Research also demonstrates that far more children and young people are left unsupported because their injuries were not caused by a road traffic accident, where a legal claim can be made. Jan explained “a whole market-place has emerged to support insurance claim cases, but as in our son’s case, there was nobody to sue, so we received no support. Far more families find themselves in the same position as us, and when they live in deprived communities, the outcomes for these children and their families are very poor. As parents who live with acquired brain injury, we know it continues to affect a child’s life, long after medical professionals have discharged them. Families need support with ‘real life’ from people who understand the needs of their child, as opposed to those with only a clinical perspective. Families are also becoming increasingly angry that it always seems to be professionals who take the lead and make recommendations about what they need. A recurring theme is emerging: “What would they know, they don’t live with it. They just walk away at the end of the day and go back to their own lives.” In response to the requests of families, in 2019 MATRIX established a Case Management Service with Big Lottery Funding, enabling the team to assess, navigate and advocate for the needs of these forgotten children and young people who would otherwise receive nothing. They support families with issues ranging from debt, domestic abuse; marital problems; family relationships; housing; mental health, welfare benefits, Education Health & Care Plans; Education and Social Care issues. Helping these families takes a concerted sustained

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effort. During the COVID19 lockdowns, MATRIX rapidly adapted services and continued to support children, young people and their families, when many others completely shut down service delivery. In 2019 MATRIX were awarded BBC Children in Need funding to develop a dedicated service for brain injured children and young people. Then in 2020 with additional funding from BBC Children in Need and Youth Futures, this service was expanded to include some Specialist SEN Staff, who combine SEN support with targeted cognitive stimulation interventions. Jan explained, “even though our staff received specialist cognitive stimulation training, we realised that what worked for adults was not appropriate for children and their ongoing development needs. We know there are lots of different factors to consider; so we created our own resources that form part of a comprehensive rehabilitation programme. This can be readily adapted to meet assessed need, age and functional age”. She said, “we don’t use standardised neuropsychological testing, because we are not trained to use it. Also, research is showing that standardised tests are not sensitive enough to identify the hidden needs of brain injured children; nor do teaching professionals understand the results. This is evident as so many of the kids we work with have struggled at school, even with SEN support. Their needs are far more complex than where they sit in a

WHEN A YOUNG PERSON TELLS US THEY WISHED THEY HAD DIED WHEN THEY HAD THEIR BRAIN INJURY”, OR THAT “NOBODY UNDERSTANDS THEM, WANTS THEM OR CARES ABOUT THEM”, TELLS US THERE IS SOMETHING VERY WRONG WITH THE CURRENT ‘SYSTEM NRTIMES


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classroom or ‘reasonable adjustments’ being made within schools, which seems to have been the mantra for the last 20 years! Had this approach worked the homeless and prison statistics wouldn’t be so bad! These kids leave school with the same cognitive impairments they returned to school with post injury; this then affects further academic study and future employment opportunities.” Jan highlighted; “when a young person tells us they wished they had died when they had their brain injury”, or that “nobody understands them, wants them or cares about them”, tells us there is something very wrong with current approaches. Over a period of 10 years, some of these kids have seen 20 to 30 professionals, who simply assess and re-assess them. Young people are angry that nobody has actually done anything to help them. To us that’s simply not good enough because opportunities are being wasted and young lives are being ruined! When medical professionals try to advise on educational needs for these children and young people, this can often lead to further issues. Senior Teaching staff tell us, “We are not medical professionals and we don’t understand all of these neurological disabilities and the very different needs of these kids. We don’t know what it all means for their education”. A head teacher stated, “I don’t even fully understand neuro-psychological reports. They are not very clear. The work MATRIX does, makes it understandable”. MATRIX agrees with them! It is their job to educate

children; not rehabilitate them and understand confusing neuropsychological terms. Without in-depth knowledge of both the child or young person, what has changed since the injury, and a complete understanding of all the hidden and complex effects of ABI’s, many professionals, including Key Workers, will still struggle to provide appropriate support for acquired brain injury. To evidence the impact their support is having, MATRIX have sourced an assessment programme that is more suited to the needs of the kids they work with, and examines a whole range of cognitive skills in more depth. The model is still based on standard neuropsychological testing, but tests, analyses and scores up to 23 key skills across five cognitive domains, that are essential for life, learning and future employment. It also measures their physical, psychological and social wellbeing which are important issues for young people. Using this assessment model as a baseline, the Team prioritise and target their interventions as part of a detailed support plan which is reviewed every three months, integrating with, rather than duplicating, work being done in school. Each child receives one to two hours of individualised 1-1 support every week, together with a range of homework activities. The aim is to give these children better longterm outcomes and brighter futures. MATRIX take a long-term view and as these results show, it appears to be working! Our Interim Outcomes are shown on the following pages.

Severe traumatic brain injury at aged 14 with midline shift *Interventions commenced three years post brain injury Improvement from baseline assessment in 2019 in two years

800 600 400 200 0

REASONING

MEMORY

ATTENTION 2019

2020

COORDINATION PERCEPTION

2021

Impact: When this young person returned to school post injury, they could only attend for two hours per week, focussing on one subject – Basic Maths. By 2021 they had completed a City & Guilds qualification Level 1&2 and are about to commence Level 3.

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A-Traumatic brain injury at aged 4 from Chemotherapy treatment *Interventions commenced therapy 4 years post A-TBI

Young person with three TBI’s aged 2, 12 + 13 *Interventions commenced 10 years post last TBI Improvement from Baseline Assessment in 12 months

Improvement by Domain 500

600

400

500

300

400

200

300

100

200

0

REASONING

MEMORY 2019

2020

100

ATTENTION

0

2021

REASONING

Impact: During this last year the focus of our support has been on the four key skills relating to Attention. We also learned this primary aged child is having significant sensory issues which create behavioural problems. Whilst the graph shows that this child is still functioning below their peers in all areas, Memory and Attention have both improved significantly. During the same period, the child made significant improvements in Maths and moved from an SEN maths class into a mainstream maths class. Teachers stated they were delighted with the progress made in 12 months.

MEMORY ATTENTION COORDINATION PERCEPTION

Score/800 2019

Score/800 2020

Impact: To date, we are seeing evidence of improved psychological wellbeing and self-confidence.

22-year-old – 13 years post Stroke Baseline Assessment

400 300

19-year-old – 10 years post Stroke

200 100

Baseline Assessment

0

800

REASONING

600 400 0 MEMORY

ATTENTION COORDINATION

ATTENTION COORDINATION PERCEPTION

MATRIX take a holistic co-ordinated approach, creating an individual profile for each child and young person we work with. This young person suffered a stroke in primary school. They were bullied and socially excluded in mainstream school for their SEN needs. They attended college with SEN Support and intensive 1-1 Teaching intervention. This person left college with a Level 3 qualification. They could gain employment but could not sustain employment due to their cognitive difficulties. They had been bullied at work due to their severe memory problems. The individual had been treated for mental health issues during adolescence, but they told us this did not work because they did not understand. Also, the individual themselves, a) did not understand what had happened inside their own head; b) how this had affected them; and c) the impact this was having on their life. As such they couldn’t tell anyone else. Then combined with a lack of understanding within the family; they were self-harming. This is a typical example of a persons needs not being understood and receiving the wrong treatment. Despite being seen by almost 30 professionals in statutory services, they have been failed under The Children Act. Our support plan is focussing on their immediate needs and will then focus on development of the seven key skills relating to Memory.

200 REASONING

MEMORY

PERCEPTION

This young person has received very little meaningful and knowledgeable help and support from statutory services. Despite receiving SEN support at school, they didn’t have an EHC Plan and left with very poor exam results. Attending college has failed and social care want to place them in a day unit facility. This lack of understanding has had a significant negative impact on their mental health and self-esteem. In addition, this young person received very little intervention from health services, to address their physical re-ablement, aphasia and other communication deficits. This is a real-life example of a brain injured child being failed under the Children Act for over 10 years by statutory services, despite being under the care of 25-30 multi-agency professionals! Our interventions prioritised developing self-confidence and self-esteem. In the short time we have been working with this young person, they have read a book for the first time in 10 years; speech has improved to the extent that they can formulate 7-to-10-word sentences and can now write the alphabet and send simple text messages to friends and family. The next steps of our support plan will focus on developing skills relating to Attention.

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INPATIENT REHAB

Delivering life changing rehab – the step by step approach taken at Askham From meeting people at their most vulnerable, facing an uncertain future after devastating injury or illness, Askham Rehab has a stellar track record in supporting them to achieve positive life-changing outcomes. From the very start of their rehabilitation journey, the Askham team unite behind each resident, helping them to achieve their personal goals and look to a more positive future than the one they believed lay ahead when they arrived. Such is the reputation of Askham, based near Doddington, Cambridgeshire, that residents come from across the nation, with the compelling combination of person-centred rehabilitation - which includes hydrotherapy and the latest in robotic innovation helping to deliver significant results, often within a 12week placement. And at the heart of the service Askham delivers is its team. From the care, nursing and therapy teams, through to the housekeepers and facilities support, everyone has a role in ensuring the Askham journey is the best it can be for each and every resident. “What we do here starts with one person and ends with one person (the resident), but it goes so far beyond that during their time with us. The team we have here is incredible and we couldn’t achieve what we do without them,” says Luke Cook, head of rehab and nursing at Askham Rehab. “Our care team have the most time with the residents,

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more eyes and hands on our residents than anyone else, the role of carer is impossible to define and they do one million roles rolled into one. They support with; personal care, mobilisation, therapy, personal issues, they holistically support our residents with absolutely everything (and more). “Often they will be the first and last person a resident will talk to most days. Care teams don’t get mentioned as much as they should, and I don’t think even they realise how much their involvement influences everything else. From sharing past experiences, to being about the encourage participation in certain activities as of the relationships formed, through to making the ‘best cup of tea’ - it’s sometimes the little things that have a really big impact. “Our nursing team, with the support they provide with pain management, corresponding with MDTs and enhanced levels of care, alongside our therapy team - so the SLTs, OTs, physios and neuropsychologist - are crucial in the support, leadership and expertise they give our residents. “But around that is our support services. We have a seven-acre tranquil environment, but it wouldn’t be that if not for the facilities team. If the boilers didn’t work and

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INPATIENT REHAB

the lightbulbs weren’t changed, we wouldn’t function as we do. Likewise with our housekeepers, without them the service doesn’t work - and after 18 months where infection control was absolutely paramount, without them, we couldn’t have done the job during the pandemic we have done. “Importantly, these are very relatable people, someone for our residents to have ‘normal’ or ’non-clinical’ conversations with. We know our residents really value that. “Our team all support each other, they very much rely on each other, their roles are interlinked and we all work together to make sure everything we do is as meaningful as possible for the residents. I’m so proud of the role they all play.” While many people may not have heard of Askham until such time they need its specialist support, its dedication to securing the best possible outcomes means its work begins as soon as they arrive – with discharge already planned for even before that time. “The sad truth is that people don’t know about us until they need us. People come from far and wide, because of our nursing-led support as well as the rehabilitation we provide. We are very niche and with a strong reputation, which is increasingly growing with the outstanding work the team consistently delivers” says Luke. “It all starts with an illness or injury, a life-changing event which, after discharge from hospitalisation, will enable us to work with that individual and support them. We make sure we have all the information we need to

WHAT WE DO HERE STARTS WITH ONE PERSON AND ENDS WITH ONE PERSON (THE RESIDENT), BUT IT GOES SO FAR BEYOND THAT DURING THEIR TIME WITH US. THE TEAM WE HAVE HERE IS INCREDIBLE AND WE COULDN’T ACHIEVE WHAT WE DO WITHOUT THEM 69

commence the pathway and start to create what they want the outcomes to be and what that journey will look like. “The discharge planning starts as soon as we do the pre-admission assessment, and what that may look like - whether they will go home, if their home needs to be adapted, or whether they will need longer-term care. “Residents have a finite amount of time here, so it’s important we commence their plan at the earliest opportunity, which is then reviewed after eight weeks, but again it’s very personalised and there is no set timeframe for recovery. You could have two people of the same age with a brain injury, but it could impact them very, very differently. It is all about the individual and how they progress during their time with us.” Upon transition to Askham, each resident is assessed by its in-house therapy team - comprising speech and language therapy, physiotherapy, occupational therapy and neuropsychiatry - to set out the goals during their time there, with support given on a daily basis in making them possible. “It can sometimes be a challenging conversation to talk about what is realistic to achieve,” says Luke. “We want to give people hope, but not false hope. They will have as much time, support and therapy as they need, which is tailor-made to help them achieve the results they want. “But without the resident and their desire to achieve,

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INPATIENT REHAB

we wouldn’t be able to make the progress. We offer the tools and they do the work. There aren’t always good days in rehab, a patient could regress or feel they’ve taken steps backwards, but they are always outweighed by the positives.” To increase its support for residents nearing their time at Askham, and in preparation for their return to home, four apartments have been created on site to help the transition, which also offer the opportunity for residents to be joined by loved ones. “We make the flats as much like home as we can so we aren’t setting people up to fail,” says Luke. “If someone is going to succeed at home, they need to experience what it will be like, so we try and make it as similar and user-friendly as we can - the benches in the kitchen are the same height as they would be back at home, for example, but it’s in a supported safe environment. “We have one resident at present who is living there with her husband, she’s someone not from a million miles away but this is definitely a step in the right direction for her. She has been there with her partner for two months and this is an invaluable opportunity for them both to see what life will be like beyond Askham. “Having a loved one on site with a resident is wonderful, and it’s another string to our bow to be able to offer this.”

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As a small and very close community, inevitably many of Askham’s former residents keep in touch with the team post-discharge, such is the bonds that are routinely created during a person’s time there. Indeed, Askham has recently named its first ambassadors, four former residents who are now Experts by Experience, who will share their experience with current residents to help inspire them through what may seem a long and difficult journey. “By the time they leave, some people see us as an extension to their family. After such an experience, you cannot help but form a positive relationship with our team,” says Luke. “It is wonderful for our staff to see where that person is now, and we hope to go back to being as open as we were in 2018 at some point, so we can welcome many more former residents back. “Some of our residents have had outstanding outcomes and some are now our first Experts by Experience, who are invited back in to share their stories directly. It is probably the most empathised conversation you could imagine, hearing from someone who has lived that reality. “Every lesson not learned is a lesson lost, and those who have lived it are now sharing it, which is for the benefit of everyone.”

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7TH GLOBAL SYMPOSIUM ON MEDICAL KETOGENIC DIETARY THERAPIES

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COMMUNITY REHAB

A vocational rehabilitation programme in the North East aimed at getting those living with a brain injury back into working life has been resurrected by a community charity. Headway Tyneside worked closely with the NHS and fellow charities, Headway County Durham and Headway Darlington & District, to ensure the programme could continue following last year’s closure of Newcastle-based providers, Momentum Skills.

‘Headway to Work’ is the newly-branded service which will support around 14 people per year living in Durham and Darlington. Each participant will be individually assessed by therapists to gain an understanding of their difficulties, enabling the team to offer personalised support throughout the programme. The training focuses on improving self-management skills such as self-care, goal setting, productivity, sleep and fatigue management, as well as technical skills such as IT and literacy. The final phase of the programme will involve voluntary placements for participants to ensure they feel comfortable, confident and have the relevant vocational skills before seeking paid employment.

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In the future, the group hopes to deliver the ‘Headway to Work’ programme across more parts of the North East, within Gateshead, Newcastle, South and North Tyneside. Alistair McDonald, chairman at Headway Tyneside, explains: “We all know how incredibly difficult the past 18 months have been. Those with disabilities or long-term health conditions have been especially vulnerable. The Momentum programme was well received and helped lots of individuals with a brain injury plan a route into employment, education or training and it’s fantastic that we can continue to deliver this type of service. “The service will now be delivered closer to where participants live rather than having to travel to Tyneside. Less travel and being in a more familiar place should help people feel less fatigued and provide an opportunity to socialise and development friendships with other learners local to them. “Currently, we have around 10 staff, including Julie Meighan our clinical service development manager, who will oversee training sessions run by a neuropsychologist and job coach. Julie worked as a specialist brain injury occupational therapist for many years so has the clinical knowledge and experience this programme needs. “Our fantastic team of committed volunteers will support the delivery of this vital work to those who want to prepare for a return to work or plan a route into employment, training or education.” Headway Tyneside is an independent charity providing support services to brain injury survivors and their families. In recent years, the board of trustees has developed a strategy to grow the scale and scope of services to provide more diverse and specialist services to their members. For information, contact Julie Meighan, clinical service development manager, on headwaytowork@headwaytyneside.com or 07572 041789 72



INTERVIEW

‘We know it’s difficult - that’s why we exist’ An organisation established in response to the lack of community-based brain injury support is now helping to change the reality for survivors across East Yorkshire and Lincolnshire.

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P.A.U.L For Brain Recovery has helped hundreds of people living with brain injury since its inception in 2016 and has created a dedicated centre in Hull to offer support to individuals and their families as they seek to rebuild their lives after the devastation of brain injury. The charity was formed by Paul Spence, who sustained a brain haemorrhage in 2012 in an unprovoked attack, leaving him struggling to cope with the new reality he faced. Having been forced to give up his career and deal with the breakdown of his relationship, Paul’s situation was amplified by the lack of community support postdischarge from hospital. But through discussing his experiences via social media, connecting him to other brain injury survivors, Paul realised the impact he could make on so many lives by leading the way and filling the void in community support - and through the creation of P.A.U.L For Brain Recovery (which stands for Positivity, Awareness, Understanding, Love) he and his growing team are delivering life-changing impacts to people in Hull and beyond. The expanding charity routinely works with people as far afield as Lincolnshire, who travel to its base in Hull’s Wilberforce Centre for access to its many sessions, delivered on both a group and one-to-one basis, which range from health and wellbeing, education, social groups, peer and family support and advocacy. A youth group has also been created, alongside a ‘Heroes Group’ who share experiences and help determine the future direction of the organisation. 74


INTERVIEW

P.A.U.L For Brain Recovery - which has secured funding from NHS Hull CCG in recognition of its role in community brain injury support - also arranges social outings and allotment sessions for its group. And for founder Paul, he is proud of the difference the organisation continues to make to the lives of people like him and his family, who left the outstanding medical care of Hull Royal Infirmary to be discharged to minimal support in the community. “There was no training or support. I was in a bubble and my family were looking after me, it was very difficult for them trying to muddle through. We very quickly realised there were very limited services in the community, not adequate services for the support brain injury recovery needs,” he says. “I couldn’t explain how I was or how I felt because I didn’t know. I was like one of those people you see in the movies who sits there staring into space. All I knew was that my life was different and difficult. “It has taken me years to make sense of it. But then when the insight does improve, that’s when the depression comes because you realise what your life actually is now and it pulls you down. “My relationship broke down, my social circles faltered, and you certainly find out who your friends are during times like that. People were having to grieve for the old Paul because he wasn’t coming back, and that was incredibly tormenting and frustrating for my family. “I had worked as an electrician since I was 16 and I had a good job as a foreman, and to be told it’s likely I wouldn’t be able to continue in that career was very difficult and really frightening. I did go back to work but had gone from being the strongest link to the weakest link. The lads had my back and tried to help me, but I had to admit that jobs I once could’ve done with my eyes shut, I couldn’t do at all anymore. It was a daily reminder of what had happened to me. “All your life you work on building your identity and then suddenly that is stripped away. You become very vulnerable, and life becomes incredibly tough. I’m privileged to have amazing family and friends, but they don’t know how to help you and there’s little to no support there to help any of you.” Determined not to let his injury beat or define him, Paul turned to exercise as a therapy, initially running a half marathon to raise money for Hull Royal Infirmary, which

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raised over £17,000, with thousands of pounds in further funds raised since. Wellbeing became a significant factor in Paul’s ongoing recovery - his story even being documented in Men’s Health magazine - with him realising the positive impact exercise, eating well and spending time outdoors were having on his life. “Training gave me a purpose, I was giving something back to Hull Royal Infirmary but also enriching my own recovery, my brain function relies very heavily on looking after myself,” he recalls. “It gave me discipline and helped me to realise a lot of things. I would go to the gym and at first just wandered around sitting on the machines, but I realised I was different so pushed myself to get past that. “It also made me think about my health in general, which included my mental health, and looking back it was a mistake to not open up about my mental health earlier. I had a lot of time on my hands, which I actually needed,

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INTERVIEW

because that time alone gave me time to process and accept what had happened. “I now understood what happened in the early days of my recovery a lot better, and the reasons I struggled. I also realised there must be more people like me, and I wanted to help make a difference to them too - until I understood myself, I couldn’t work with other people, but I had reached that point.” From sharing his journey and thoughts on Facebook, Paul found growing numbers of people coming to him for advice, requesting his support in-person, with Hull Royal Infirmary also asking him to come in and speak to patients and families. He also did a number of talks in local schools to highlight the devastating effects that One Punch can have. “I wanted to raise awareness of ABI anywhere and everywhere, in any way I could. I had been to the NHS Hull CCG and said I didn’t think the support on offer was enough and told them about the service I was providing myself. They told me to put a business plan

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ALL YOUR LIFE YOU WORK ON BUILDING YOUR IDENTITY AND THEN SUDDENLY THAT IS STRIPPED AWAY. YOU BECOME VERY VULNERABLE, AND LIFE BECOMES INCREDIBLY TOUGH together and come back, which was the start of all of this,” says Paul. With the support of key contacts he had made, all impressed by the tireless work Paul had done in promoting brain injury recovery, Paul put together the business plan and secured funding from the NHS Hull CCG for a dedicated space in the Wilberforce Health Centre. Since 2016, P.A.U.L For Brain Recovery has built a five-strong team, delivering support to people and families whenever they need it. Leigh North joined as business lead five years ago and has worked alongside Paul in building the charity’s services and reach. “Our approach is very much about making the pathway from acute to community care as smooth as possible and to support people in that, helping them to avoid falling into crisis,” he says. “In some respects, this was initially a research project, which over the past five years has enabled us to develop focused, person-centred support plans to optimise recovery and minimise the long-term effects of brain injury. “Our overall aim is to help make life easier after brain injury and help survivors reach their new potential. We offer practical coping skills and knowledge to help them accept and manage their life-changing disability and provide healthy activities to improve emotional and physical wellbeing, so they can go on to rebuild a meaningful life.” And for Paul, he is proud of what has been created, and of the difference the charity is making to so many lives. “What we do is based on the lived experience of people who understand. We know what it’s like and we know it’s difficult, and that’s why we exist,” he says. 76


COMMUNITY REHAB

What began as a small Facebook group has now become the UK’s leading voice on Cauda Equina Syndrome. The Cauda Equina Champions Charity is an active campaigner to achieve greater recognition of the condition, among medical professionals and the public alike, with a lack of knowledge leading to many people being undiagnosed and suffering in silence. The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis. Sexual problems are also commonly experienced by people with Cauda Equina, exacerbating the mental and physical effects of the condition. And to help increase its offering to people living with all aspects of the condition, the charity has launched its virtual Champions Connect service, building on the work it did in supporting people remotely during the COVID-19 pandemic. The charity continues to grow from its origins as a Facebook group in both profile and presence, now covering the whole UK from its base in the North West and offering support through rehabilitation opportunities and workshops for people living with the condition and its effects. “Statistics say there are 1,000 cases of Cauda Equina Syndrome a year, but that is from cases in the acute surgery and spinal units, not everyone will go there, and so not every case will be recorded. We estimate there are probably three times as many people who develop it annually,” says Claire Thornber, founder of Cauda Equina Charity Champions. “But without any public health campaign or public health messages, it’s still little known – and when 80 per cent of cases could have had a better outcome through earlier diagnosis, it shows the work there is to do.

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“What struck me when I had Cauda Equina Syndrome, ten years ago, there was more information out there for dogs with it, than for humans. Thankfully things have since improve, but as a charity we still hear the same stories of delays and misdiagnosis again and again. It’s frustrating. “Cauda Equina is so much more than back pain, and through having the charity and the support there, it will save other people the journey I had ten years ago. Through enabling people to manage their own pain, we’re helping them to better support themselves.” And in changing the situation for people with the condition, Claire is ensuring the charity works closely with the healthcare profession. The team - which is planning its first Cauda Equina awareness week from September 27 to October 1, culminating in an event for medical professionals - works with Spinal Units in hospitals across the country and also helps to train student doctors and nurses in identifying Cauda Equina ‘red flags’. “It’s great that the medical profession has really taken up the gauntlet, particularly in the last two years. There has been a lot of work with pathways, which is really important,” says Claire. “But even now, members of our group are going to see their consultant about their pain and are having Functional Neurological Disorder written on their file. That’s not good enough. “It remains the case that GPs don’t pick it up often enough, as well as A & E admissions. It’s great to see the amount of work physios have done in this area and they’re generally good at recognizing the Red Flags.. “We need to break down the perceptions and stigmas that still persist in society around low back pain, doctors and the medical profession included, and that’s where our work will continue to be focused.”

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TECHNOLOGY

This is completely new and innovative technology, with a design that Steve Jobs would be proud of In the growth of the neurostimulation market globally, Helius Medical Technologies is playing an increasingly central role, with its PoNS device changing the lives of MS patients in North America and helping to demonstrate the impact of non-invasive technology in neurological disorders. NR Times speaks to Helius’ CEO Dane Andreeff about its pioneering work

Through stimulation of the tongue, people living with Multiple Sclerosis (MS) are being supported to overcome symptoms and rediscover valuable aspects of their life. Groundbreaking technology developed by Helius Medical Technologies - the Portable Neuromodulation Stimulator (PoNS™) - is changing the reality for so many people with MS by helping them to vastly improve their balance and gait dysfunction. In people with mild to moderate MS, the PoNS has been

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proven in clinical studies and trials to be highly effective, with one vocal advocate of the technology being legendary US television Montel Williams, who lives with relapsing remitting MS and helped to co-found Helius in 2013, credits the PoNS with changing his life. Designed for use over a 14-week period for 20 minutes twice a day, initially under supervision in a specialist clinic but then can be used at home, the 143 gold-plated sensors on the tongue plate stimulate two major cranial nerves in the brain to help amplify its ability to heal itself. The translingual neurostimulation (TLNS) technique creates a flow of neural impulses which are delivered directly to the brain stem, which can then travel through the brain and activate or re-activate neurons and structures. The PoNS system, which is already commercially available in Canada, is now set to launch for MS patients in the US in Q1 of 2022 and is helping to lead fast-developing global efforts to devise and develop non-invasive and non-implantable neurostimulation techniques which can significantly benefit the lives and futures of patients. And while its operation currently is in addressing MS gait and balance issues, Helius is actively looking to widen its application into stroke and TBI, helping people with such

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conditions to recover lost function and improve their quality of life. The business has recently secured its second Breakthrough Designation from the FDA in dynamic balance and gait deficit due to symptoms from stroke, recommending its use in patients aged 22 and over as part of a supervised therapeutic exercise programme - hailed as an “Important milestone” in its journey to changing lives of people living in the US. “This is completely new and innovative technology, with a design that Steve Jobs would be proud of,” says Dane Andreeff, who first became involved with Helius as an investor and took over as CEO last August, leading the rapid development of the revitalised business and raising new capital to drive its expansion forward. “Our clinical data in MS shows that PoNS gives two times the benefit of physical therapy alone. We have seen some stunning improvements in their gait - we have seen movement of eight points on the Dynamic Gait Index, where a movement of four points is considered significant. “We have a very large and proactive audience of MS patients, who live with a very uncomfortable chronic illness, and this helps to meet their unmet needs in gait deficit. It’s amazingly innovative and doesn’t require the

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two or three-hour surgery for an implantable device. “We are ready to move into the US in the first quarter of 2022 and have a fantastic MS advisory board to support us. “This is exciting and most importantly, it’s happening. We have clinical data and real-world evidence on TBI and stroke, too. I have a big heart and for too long I have seen patients living with these conditions and I think ‘I wish I could help you’. Hopefully that can be the next step for us in our advancement of the technology.” Helius’ pioneering application of neuroplasticity to rehabilitation is the brainchild of scientists at the University of Wisconsin-Madison Tactile Communication and Neurorehabilitation Laboratory (TCNL), building on decades of previous research into the field of neuromodulation. The company went on to be granted Breakthrough Device Designation in MS, becoming one of only 5.6 per cent of businesses given this status to then secure FDA clearance. With the impact of the PoNS continuing to be proven, both through clinical data and real world experience, cofounder Montel Williams is still the longest-serving user of the device following his MS diagnosis in 1999, living with its effects for over ten years before the discovery of the device which would change his life. “You wouldn’t even know he has MS now from his balance or gait. But before PoNS, he was misdiagnosed four or five times and at times couldn’t even walk, you’d have to hold him up. Now he’s skiing and snowboarding and in terrific shape,” says Dane. “I saw him recently and he continues to beat it, he’s an amazing human being and he shows how life-changing the effect can be. We can see through examples like this, as well as through our clinical data, the improvement the PoNS can help deliver, and we hear of improvement with depression, anxiety and quality of life issues too, although we don’t have any clinical claims on that.” Going forward, expansion into the EU is on the agenda following Helius’ successful launch in the US, with brain injury and stroke patients also set to be supported by PoNS. “What we do is critical to quality of life, to helping people improve their gait, and it really excites us,” says Dane. “This is a whole new industry, it’s completely innovative, and we can’t wait to be able to help more people living with MS, and eventually those living with stroke and TBI, across North America.”

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THERAPY

Blues & Tunes music therapy pilot programme a success Blue Light Symphony Orchestra (BLSO) in partnership with Chroma, successfully delivered a feasibility project investigating whether the use of Music Therapy (MT) could be used as a treatment modality, to emergency service workers who were exhibiting PTSD-like symptoms. BLSO aims to improve the mental wellbeing of emergency service workers through music. They were granted £10,000 lottery funding which was used to help fund this pilot. Over 12 weeks, emergency service personnel took part in the trial MT programme after they were assessed as having PTSD-like symptoms. Further in-take assessments via the GAD and the PHQ9 were also undertaken through the project. Amanda Thorpe, HCPC Music Therapist and NMT Fellow delivered the sessions on behalf of Chroma, the UKs leading arts therapy provider. Each session followed a similar structure designed to allow participants to experience, reflect, learn, and transfer strategies into everyday life. Psychodynamic music therapy, Neurologic Music Therapy (NMT) and Dialectical Behaviour techniques were implemented. The group incorporated free improvisation, the learning of some simple drumming techniques, blended with health and wellness education and interactive improvised music-making. Over the course of the

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programme, a sense of camaraderie increased, alongside the enjoyment, and playfulness that developed. Amanda said, “This was a wonderful project to be a part of. By the end of the 12 weeks 71% of the participants’ recorded reduced ‘levels of distress’ compared to their CORE-OM scores when they signed up for the program. Worryingly, in 2019, Police Care UK reported 1 in 5 serving police officers were living with PTSD or anxiety disorders triggered by traumatic events. Similarly, mental Health charity ‘MIND’ surveyed 1600 staff and volunteer emergency service personnel and found 1 in 4 respondents had considered ending their own life and 63% considered leaving their role because of poor mental health or stress. Even more recently, the Police Federation of England and Wales published a survey where 77% of Police Officers responding reported mental health difficulties in the past year. The use of Music Therapy as a treatment modality for PTSD, anxiety and trauma related stress within ex-military in the US is well-documented. This research 80


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formed the basis of the feasibility project to determine the efficacy of MT on emergency service workers who face trauma-like events throughout their daily working life. Blue Light Service employees from Surrey Police, Sussex Police, Surrey Fire & Rescue Service, East Sussex Fire & Rescue Service and South East Ambulance Service were offered a place in the programme. During the project, there were several participant withdrawals, which occurred within the range of “expected attrition” for such a project. Reasons for withdrawal are being considered as key Lessons Learnt for the next series of projects with other emergency services. Other factors included a lack of understanding of how music therapy would translate to help in everyday circumstances. These reasons demonstrate a stigma is still felt by emergency service personnel in seeking help to support their mental wellbeing - or to access alternative therapies for that same reason. Of the participants that did complete the project, they stated a positive reduction in symptoms, an increased sense of wellbeing and a sense of leaving therapy with specific coping strategies. In order to evaluate the effectiveness of the programme, participants completed a Clinical Outcomes in Routine Evaluation–Outcome Measure (CORE-OM) questionnaire in the first and last sessions, an Outcome Rating Scale (ORS) at the beginning of each session, and a Group Session Rating Scale (GSRS) at the end of each session. Participants also completed the Patient Health Questionnaire (PHQ-9) and the Generalised Anxiety Disorder Assessment (GAD-7) online. After the fifth session, participants attended a 30-minute 1:1 session with Amanda to discuss the therapy and to recalibrate personal goals for the remainder of the program. Participants then had a final 30-minute 1:1 session, after the therapy ended, to review their progress and discuss any ongoing recommendations. Amanda Thorpe, music therapist who ran the project said, “I am an avid supporter of Music Therapy implementation as a treatment modality for trauma and am happy this pilot generated positive results. “Avoidant behaviour is a common symptom of PTSD. Musical improvisation through drumming demands an active response and despite feeling uncomfortable, resistant, and sceptical at the beginning of the program, 81

IT IS OUR HOPE THAT IN THE FUTURE, MUSIC THERAPY BECOMES MORE WIDELY AVAILABLE FOR EMERGENCY SERVICE PERSONNEL each participant demonstrated a significant level of awareness, adaptability and resilience just by showing up. They were all willing to go outside of their comfort zone and to try something unknown.” Participant feedback revealed surprise at the benefits experienced, going outside of a comfort zone, learning different coping strategies, reduced stress. Many participants expressed a desire for the group to continue and requested they be contacted about additional programs for which they could sign up. Amanda continued, “It is our hope (myself, BLSO and Chroma) that in the future, music therapy becomes more widely available for emergency service personnel. Several participants felt the project was ending too soon as they were just starting to benefit from the group. Others stated the 1-hour duration was too short and was ending just as they were beginning to relax and engage. Longevity and duration are both factors that should be explored for future programmes.” Results indicate the Blues & Tunes music therapy pilot programme provided an effective therapy intervention that reduced PTSD related symptoms of attendees. The main benefits identified by participants were the use of drumming and guided meditation. There was a significant level of surprise amongst participants regarding the difference in their pre-conceived ideas of what music therapy would be, and what they actually experienced, suggesting a lack of awareness and understanding of the intervention modality. Group participants felt that the programme made a positive difference to their understanding and management of themselves and their symptoms. All participants commented on a shift in their sense of wellbeing after exposure to the programme and on having gained tools that they could take forward. This was supported by the data. With the success of the pilot project, it is hoped that the use of music therapy as a treatment modality for emergency service workers exhibiting PTSD-like symptoms could be widened.

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TECHNOLOGY

Could the long-awaited breakthrough for GBM patients be on the horizon? While breakthroughs in cancer treatment over the past 40 years have been truly life-changing, with recovery prospects and life expectancy in many common cancers revolutionised, that sadly is not true with regard to glioblastoma (GBM).

A particularly aggressive form of brain tumour, the outlook for GBM patients continues to be bleak, with the average survival time being just 12 to 18 months despite an intensive treatment regime comprising surgery, chemotherapy and radiotherapy. Only a quarter of people diagnosed with GBM survive for longer than this, with just five per cent still alive five years later. In a world where cancer treatments continue to be developed successfully, the overall outlook for most cancer patients is improving accordingly - 76 per cent of breast cancer patients now survive for at least ten years following diagnosis, a rate which has doubled in the last four decades. Sadly, this has not been the case for GBM patients.

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And it is that lack of progress in GBM treatment, which has inspired the creation of what just could be the longawaited breakthrough. Through the work of QV Bioelectronics, the potential of electric field therapy in helping GBM patients see better clinical outcomes and experience improved quality of life is being realised, with the combination of the biomedical engineering and neurosurgery expertise of its founders, helping to give hope for the future in an area where advances are desperately needed. “It is too long since we have had any change in how GBM is treated. The needle has moved massively in cancer care, but not in GBM. Our ambition is to increase the number of ‘long term survivors’ significantly - the ones who survive for several years, who currently only make up a very small percentage of all GBM patients,” says Qasim Akhtar, head of business development at QV Bioelectronics. And with the development of its implantable GRACE device, which would be used alongside the current standard of care, the business is already on its way to delivering on its ambitions. With a prototype device already made, and ongoing investment being raised to support its progress - with the last £735,000 seed funding round significantly oversubscribed - QV Bioelectronics is striving to be available on the market in late 2028. Further research and development is ongoing, with pilot studies moving into large animals next year, as

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QV Bioelectronics continues to move closer to its lifechanging technology becoming reality. The business, established in 2018, was inspired by the experience of Dr Richard Fu, a neurosurgeon who was determined to develop better treatment solutions for GBM patients. He was aware of the recently developed approach to deliver electric field therapy through an externally worn scalp cap, which had already shown promise in clinical trials, but believed that an implanted approach to deliver electric field therapy continuously and more precisely could have the potential to dramatically improve patient outcomes whilst also improving quality of life. “Too often, patients were being told they might have a year left. Some of whom were in the prime of their lives, but there was nothing the doctors could do. Patients, and doctors too, were crying out for improved treatments,” says Qasim. While carrying out research at the University of Manchester, Dr Fu met Dr Christopher Bullock, a biomedical engineer with expertise in medical device design, biomaterials and bioelectronics, who was completing a PhD in regenerative medicine. “They became fast friends in the lab and the idea took off from there. Chris had huge complementary experience and knowledge in the use of advanced materials in bioelectronics, and the concept drew upon Chris & Richard’s joint expertise,” says Qasim. “They believed that they could create something highly innovative – an implanted device made from advanced materials which could deliver electric field therapy 24/7 and had the potential to improve survival rates whilst not affecting a patient’s quality of life. This would represent a huge breakthrough.” And from that concept has come the development of GRACE. After winning the Eli and Britt Harari Award from the University of Manchester in 2018, established to develop commercially-viable ideas using the wonder material graphene, Dr Bullock and Dr Fu used the £50,000 award to begin the process of bringing their idea to life. From there, QV Bioelectronics - which rebranded from Honeycomb Biotechnology - has continued to develop, with a now six-strong team, of which Qasim was the first employee, and expansion into the UK’s biggest bioscience park, Alderley Park in Cheshire, helping to propel it forward. Accelerator programmes at Alderley

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IT IS TOO LONG SINCE WE HAVE HAD ANY CHANGE IN HOW GBM IS TREATED. THE NEEDLE HAS MOVED MASSIVELY IN CANCER CARE, BUT NOT IN GBM.

Park, RebelBio (at Imperial College London) and Creative Destruction Lab (at Oxford) have also helped to lay the foundations for its future. Significant investment has already been raised, but much more will be needed to ensure QV Bioelectronics is able to achieve its ambitions and make its technology available to medical teams and patients. “We know we’re going to have to raise a lot of investment but we’ve had great support for what we have done so far, and from investors buying into our plans. We need to go through safety clinical trials and major international trials before we can look at securing market approval, the regulations for which are very tight, as they should be,” says Qasim. “When we go into the studies in large animals in about a year’s time, we hope to show the progress we’ve made with some exciting safety data, and we can move forward from there.” “It’s amazing to think how far we have come already. When I first joined in 2019, we were working on ideas in co-working spaces and coffee shops, but we are moving forward strongly. There is a huge amount of work to do, but we are all inspired by the end result.” “Our big ambition is for this to be something that a surgeon recommends whenever a GBM patient has surgery, and for this decision not to be limited by price. In the longer-term, we can also look at whether we can expand what we do into other neuro-oncologies, and whether we can integrate detection systems - but for now, the entire focus is on GBM, an area where change is so badly needed.”

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INPATIENT REHAB

Empowering patients to take control of their rehab A new NHS rehabilitation centre, the first in the UK to incorporate digital technology and virtual reality into its rehab offering, is helping to redefine rehab as we know it. The purpose-built ward at Castle Hill Hospital in Hull has 12 beds and a range of facilities, including a gym, therapy room and garden area, to enable a comprehensive rehab offering to be delivered. It also becomes the first NHS inpatient rehabilitation unit to incorporate digital technology, including virtual and augmented reality into its rehabilitation programme, after Hull hosted the UK’s first successful clinical trial of the GEO robotic gait trainer in 2017. The project marks a significant investment and the first purpose-built NHS specialist rehabilitation centre across the Humber, Coast and Vale area and neighbouring Lincolnshire. “This new building brings rehab into modern life. Previously to this, we had our rehab unit as part of the cardiac ward, and more recently in the oncology section, but the limitations of not having a dedication rehab ward became obvious,” says Dr Abayomi Salawu, consultant in rehabilitation medicine at Hull University Teaching Hospitals NHS Trust. “Our role in rehabilitation is to help restore function and enhance quality of life for people with complex

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health needs so that they may go on to live fully and meaningfully, not just exist. “Normal hospital ward environments aren’t generally suited for this purpose, especially in the case of patients with acquired brain injury or physical and cognitive deficits. “This new ward gives us the space and the facilities we need to provide specialist rehabilitation input to the highest level, and will also deliver an environment which is more conducive to patient recovery. “We have 12 beds, we do need more, but while acute clinical care and public health have both received significant investment for many years, but rehabilitation - the third pillar upon which the NHS is built - has sadly lagged behind. “So our new rehabilitation ward is a really significant development and definitely a step in the right direction.” Redefining the traditional definition and practices of rehab is something Dr Salawu has long been committed to, and that extends into the ethos of the Castle Hill ward. “We offer complex rehab, if the nurses or staff on any ward think they have a patient who could benefit, then they can come to the new ward,” he says. “Life has to be about more than going to the toilet and the whole ethos of being able to conquer that starts by conquering your first environment, which is hospital. “The approach that has always been taken often makes a patient more poorly, in a way. I’m not underplaying physical injury, but in an NHS hospital, the first thing we do is give someone a bed, even if they walked in. A lot of people become deconditioned when they are hospitalised, and that’s making patients worse.

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INPATIENT REHAB

LIFE HAS TO BE ABOUT MORE THAN GOING TO THE TOILET AND THE WHOLE ETHOS OF BEING ABLE TO CONQUER THAT STARTS BY CONQUERING YOUR FIRST ENVIRONMENT, WHICH IS HOSPITAL.

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INPATIENT REHAB

“If you can get a patient as physically fit before surgery, through ‘pre-hab’, then that can make things so much better before and after. With our amputation patients, we do the ‘pre-hab’ work with them and it’s so successful we can then pick them up after surgery as an outpatient. We haven’t used our rehab beds for amputation patients for four or five years now. “Another thing in rehab is that there isn’t always a cure, but that doesn’t say you can’t live life well and meaningfully. If, for example, you have a child with Cerebral Palsy, then that condition isn’t going to be reversed - so let’s move on and find out what we can do. How can we enable them to do things and how can we support them in that?” One key way of engaging patients is through technology, believes Dr Salawu. In addition to the therapy work of the MDT, Dr Salawu is a firm believer in the power of virtual and augmented reality, and is so invested he is even leading the development of new apps. “I’m a firm advocate and believer in technology, I’m totally sold that this helps rehab. I always look for whatever low hanging fruits we can use, and technology is something we can use. It’s easy, quick, achievable and doesn’t cost a massive amount,” he says. “We use virtual reality and augmented reality and we have linked in with Hull University to develop a virtual kitchen app, which patients can interact with virtually and then use their skills to replicate the tasks with their OT in the real-life kitchen. “It’s all about practice, practice, practice. That’s what helps recovery and that’s what rehab is about. But practice is boring, for a lot of people rehab isn’t exciting,

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and that’s the problem. “If you want someone with a paralysed limb to practice moving it, if they try a few times and their limb doesn’t respond, even the most motivated patient will give up. But if you translate that into a virtual environment, where you can move your virtual limb in a virtual world, then that might give the opportunity for some recovery and psychologically can be very important. “The more opportunities you give to the patient to practice rehab, so they can maintain or recover their function, the better. That’s why VR works so well, because it’s fun it makes rehab more engaging. “That’s where we should be pushing, to empower patients to take over their own rehab. “I said to the computer scientists that I hear video games are addictive, could they please create some addictive rehab for my patients so they would become addicted to their practice! “But we also have a quiet room in the new unit, where patients can use the immersive environment of a VR headset to be calm, de-escalate, become less agitated. We have developed the Brain Recovery Zone app, which is very calming and soothing, and can be used by patients in their own homes as well. “Through putting on a headset and being in that calm environment, that can also be very important in rehab. “For my patients, iI say ‘Whatever floats your boat. Try things in rehab, see what you enjoy and what works’ and we’ll see what we can achieve. I want to empower patients to take control of their rehab however they can, and by using these pieces of technology, we’re seeing great results.”

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THERAPY

Knowledge, Understanding and Empathy: What Award-Winning Dementia Training Looks Like The Dementia Care Awards recognise and reward the first-class services, and very best people, who work in the field of dementia care. Through showcasing excellence and innovation, the awards celebrate the provision of outstanding care for people living with dementia. At the 2020 awards, the team at Elysium Healthcare’s Adderley Green Care Centre, in particular colleagues at Gladstone House, saw off high-quality competition from across the social care sector, to win the coveted Best Dementia Training Initiative 2020.

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In this article we chat with two of the main therapists from the team behind the training, Psychology Lead, Dr Darren Perry and Physiotherapist, Damien Humphreys. We discuss why dementia training is so important, what good dementia training looks like and the positive impact that it has both on residents and the care team that support them. Hi Darren, Hi Damien, would you mind introducing yourselves for our readers. “Hi, I’m Darren Perry. I’m a Consultant Clinical Psychologist and Psychology Lead at Adderley Green Care Centre. Prior to being appointed by Elysium, I worked for 20 years in NHS Neuropsychology, Physical Health and Older Adult Mental Health Services. During that time I helped to establish and refine assessment and diagnostic pathways within Older Adult and Young-Onset Dementia services. The consistent theme across all my clinical experiences has been a focus on psychological adjustment to changes in neurological and physical health. “Working together with Damien and the team, we set out to develop a training package that would enable all our colleagues to feel properly informed about dementia and equip them to provide the best possible care for residents.” “Hi, I’m Damien Humphreys and I am the Lead Physiotherapist at Gladstone House, Adderley Green Care Centre. I’ve worked in a variety of settings over the past 10 years in neurological rehabilitation and management of musculoskeletal conditions. I have a specialist interest in dementia.

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Thanks both. Let’s start at the beginning. Can you tell us more about your award-winning training? Darren: “The training is really comprehensive. The first section looks at the functions and organisation of the brain. We then focus on how the main types of dementia disrupt the normal functioning of the brain and how this underpins the emotional, cognitive and behavioural changes that people affected by dementia may experience. “We wanted to provide a good foundational knowledge whilst pitching the training at a level that engages all staff. We feel that it is important for staff to understand that changes in the brain, which are beyond the control of the individual, are a key factor in most of the difficulties they face. “An awareness of how neurological decline might affect any one of us if we developed dementia is crucial in helping staff to de-personalise challenging aspects of behaviour and encourages empathy as a starting point in all the care interactions they deliver.’’ “In the afternoon session, we build on this theoretical knowledge by focusing on the technical skills needed to provide excellent care for people with dementia. We draw on experiential learning exercises to really emphasis the core principles of care provision that we aim to instil in all our colleagues.’’

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THERAPY

“We wanted the training to be as comprehensive as possible so we run it over the course of a full day. Setting aside that amount of time is quite unique and not always possible for other dementia care services, but at Adderley Green it something that we have prioritised and both residents and our team are seeing the benefit of it.’’ So in addition to being thorough and providing in-depth knowledge, what else do you think stands out about your training? Damien: “We take a dynamic approach to learning and include numerous exercises and activities in our training. I think that if you want participants to actually put the training into practice when they’re on the units supporting residents, then you need to make sure the learning can be applied practically and isn’t just words that stay on the page. “Our training includes interactive sessions throughout the day, ranging from icebreakers to trust-building exercises and group tasks. When training is a shared experience between the attendees, with higher engagement levels, then more information is retained. They can connect more with the material and are more open to learning.”

WE ENCOURAGE OUR TEAM TO GET TO KNOW EACH PERSON THAT WE SUPPORT AS AN INDIVIDUAL AND UNDERSTAND THAT THEY HAVE UNIQUE NEEDS THAT ARE SPECIFIC TO THEM. EVERYTHING WE DO SHOULD BE PERSON-CENTRED.

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I imagine that is particularly important for team members who are new to care? Damien: “Yes exactly. Many individuals who are new to care don’t have prior experience of supporting someone living with dementia and often only have limited understanding of how the condition affects a person’s capacity to complete daily tasks. “To help team members improve their knowledge and develop empathy for how day to day experiences are impacted by dementia, the training also includes a sensory deprivation exercise, which uses aids and specialist equipment to reduce a person’s sensory capacity. “Participants wear gloves to inhibit their sense of touch and tactile experience. They use ear defenders to reduce their hearing levels and special goggles to limit their vision. We also get them to wear particular shoes that are difficult to walk in and will then ask them to complete the simple functional task of putting on an item of clothing, like a jacket. “We then follow this by asking a care worker to support them to complete another functional task without telling the participant what that task is. The care worker in this scenario then assists the participant to go and make a drink at a nearby table. “It isn’t possible to fully replicate the effects of dementia but by withdrawing much of the sensory input it can give team members some understanding of the difficulties that our residents may face. The purpose of the exercise is to demonstrate the importance of empathy and how we can use that to regulate our own emotions or feelings in sometimes challenging scenarios. “We get lots of positive feedback from the participants about this particular exercise and it seems to have an impact on people.” And what have been the benefits of your training for staff? Darren: “We find that the more knowledge and awareness our team have of what is happening for the individual, the more confident and compassionate they are in providing care. “For example, people living with dementia often experience difficulties creating memories for recent events and this leaves gaps in their day-to-day awareness. They might make sense of the here and now by drawing on autobiographical memories from the past to fill in the gaps in their understanding. So, for instance, an individual

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may think that they have to go to work when they awake in the morning, despite having retired many years ago. If a carer confronts them too abruptly with the reality of their current circumstances, this can add to their confusion and anxiety. “After completing our training, participants understand the need to be careful and considerate with their communication so they do not cause unnecessary distress for the person. We encourage them to acknowledge and validate the emotion that the individual is experiencing and then attempt to engage them in conversation. In our example, they would start with a conversation about the person’s previous occupation and gradually evolve this into a wider discussion about their past life. The individual can often be diverted away from their initial anxiety and gently refocused on aspects of the here and now.” So it requires a more flexible, empathetic approach? Darren: “Yes that’s right, and to do that I think there are three main factors to consider. First of all we encourage our team to get to know each person that we support as an individual and understand that they have unique needs that are specific to them. Everything we do should be person-centred. “Secondly, we think about stepping into their shoes, putting ourselves in their place and understanding the world from their point of view. This is particularly important if we are supporting individuals who exhibit challenging behaviour. Yes, the physical behaviour can be challenging to the care professional but we ask staff to flip their thinking about challenging behaviour around. Rather than see themselves as the person being challenged by the particular behaviour, they should view the behaviour as an indication that the person with dementia is feeling challenged by some aspect of their circumstances or environment and this is their only effective way of communicating their frustration or distress. “This perspective, coupled with their greater understanding of how dementia affects cognitive, motor and sensory functioning makes colleagues less likely to respond negatively to the behaviour and allows a calmer and more caring attitude. “Then finally, we advocate an engagement-focused approach which adapts all activities to the appropriate

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level of stimulation and interaction for each individual. It is vital that colleagues are adaptive and tailor their communication style and their overall approach to suit the cognitive, communicative and sensory-motor level of the dementia-affected person. “The three factors we emphasise are interconnected, hence the more we get to know a resident, the easier it becomes to understand their behaviour in context and the better able we are to find activities that will be personally meaningful and more engaging for them. This means that whatever we are doing we always place the needs of each person first and our overall aim is to support their sense of wellbeing.” It’s clear that the training has a really positive impact both on participants and the people that you support, so how did it feel to win the award? Damien: “It was a fantastic feeling when they announced that we had won the award. We are all passionate about providing the highest level of care that we can for our residents. It was very much a team effort and a lot of time and energy was invested into making the training interactive and engaging for the participants. We are all very proud of our achievement.” Darren: “We would also like to thank Ronan Flood, Elysium Neurological Training Manager, for his input in the early stages. He really helped us to think about the way training is delivered in order to make it as interactive and easily digested by the participants.’’ And to conclude the interview, do you have any thoughts about how you might develop the training in the future? Damien: “Following the success of the dementia awareness training we have plans to employ the same approach for a brain injury awareness training. We hope to support our colleagues to provide the same flexible and empathetic approach by providing the knowledge and skills to care for people with brain injuries.” Darren: “I think the award prompted us all to feel an even greater sense of ownership and investment in the dementia training. We regularly review the package after we have delivered it and make minor adjustments and additions to it. In this way, we feel we are honing it and keeping it fresh which helps us to stay actively engaged each time we deliver it.’’

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COMMUNITY REHAB

Award to recognise schools’ commitment to supporting ABI

Schools are to be recognised for their commitment to supporting children with acquired brain injuries (ABI) and their families through the introduction of a new accreditation.

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The Child Brain Injury Trust has created the ABI Aware School Award, to help both primary and secondary schools develop best practice around brain injury and its often hidden consequences. Research has shown that, on average, in a class of 30 children, three will sustain a brain injury at some point in their childhood, with at least one being a serious injury. Each year, at least 35,000 children will be taken to A&E with a head injury, although the actual number of those sustaining ABI is thought to be up to 60,000. However, due to the ‘unseen’ nature of many of the effects of ABI, the true effect of this on children’s lives is often underestimated or not recognised, and in many cases a child’s brain injury is undiagnosed. To help support such children, as well as their families, the Child Brain Injury Trust has put together a framework comprising seven overall topics and 39 individual criteria for schools to address, which they will be supported to achieve ahead of their assessment for the award, with reaccreditation being required every three years. 92


COMMUNITY REHAB

The framework covers a spectrum of aspects from identification and awareness of ABI, to transition or return to school, and how the individual child and their family are communicated with. Teachers will be able to access free CPD-accredited training online, alongside pre-prepared lesson plans to enable them to support pupils in developing their awareness of ABI. The ABI Aware School Award has been in the planning for several years, and went into trial last year, with one academy school in Herefordshire set to become the first in the country to secure the award in the coming months. It is now set to be rolled out nationally. The Child Brain Injury Trust has collaborated with the Eden Dora Trust for Children with Encephalitis on the development of the award. “The vast majority of children return to mainstream school after ABI. For adults, they may need to go to specialist rehabilitation, but for children and young people, their ‘rehab’ takes place in school. While teachers are experts in teaching children, they are not equipped to deal with brain injury - and that is the reason for the Award,” says Louise Wilkinson, head of information and learning at The Child Brain Injury Trust who is leading the initiative. “The Child Brain Injury Trust has always promoted awareness of ABI within education because it’s so important, but there is a still a lot of work to do. I would liken ABI to being regarded how ADHD was five to 10 years ago. I you go into a school now, everyone knows

THROUGH THE AWARD, WE’RE TRYING TO CREATE MUCH GREATER AWARENESS OF CHILD BRAIN INJURY, AND INCREASE THE KNOWLEDGE OF HOW TO RECOGNISE THE SIGNS AND WHAT TO DO IF THEY ARE THERE 93

what ADHD is, and that’s where we want to get to. “We felt the best route forward was to produce something free to encourage schools to grasp the nettle and be proactive in learning about ABI. Even if they don’t think they know of any children who have a brain injury, statistically there probably will be, so it’s about recognising the signs and supporting them from there.” Through the specialist training provided and identification of areas to look out for with children’s behaviour and the support they need, schools can play a vital role in getting to the root of causes of behavioural or learning issues, says Louise. “When a child has a head injury and goes to A&E, the majority of parents are told their child has made a full recovery. Often they’re given a concussion letter and off they go home, and in some NHS Trusts it isn’t recorded as a head injury if they’re not admitted for two nights or more,” says Louise, a past winner of the UKABIF Stephen McAleese Award for Inspiration by an individual in the field of ABI. “They’re walking wounded, they look fine, sometimes an injury is never picked up at all and these problems can then lead into the youth offending system. Maybe physically they have made a full recovery, but it’s the unseen impact which is often not recognised. “It can be much later when things are noticed - I remember one family with a 14-year-old son who started going off the rails, his parents were beside themselves and paid for a private paediatric clinical neuropsychologist. They opened the file and asked ‘Is this anything do with with the fractured skull he sustained aged two?’ “Through the Award, we’re trying to create much greater awareness of child brain injury, and increase the knowledge of how to recognise the signs and what to do if they are there.” The Award is expected to be a 9 to 12 month process for most schools, with Louise and the Child Brain Injury Trust team supporting schools throughout, with ongoing feedback being given on the application process. “We don’t want anyone to fail and will do all we can to get every school to succeed. It may well be a case of them having to implement new processes to be given the Award, or simply of giving us more evidence to show what they’re doing, but we will work with schools to help them become ABI Aware,” says Louise. “We want the whole school team to buy into this and would urge any school who would like to be part of this to get in touch.”

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NRNEWS

'Understand the risks to improve safety' Brain injury survivors, and the professionals who support them in their lives, are being educated in the risks of using the internet and how to maximise safety when going online by the UK’s only cyber safeguarding specialist of its kind.

Cyber Spider was created to support vulnerable adults in their digital use, assessing the needs and capabilities of each individual and preparing a bespoke plan of recommendations for their unique circumstances. Working closely with legal teams, Court of Protection and social workers, Cyber Spider can prepare Digital Care Plans, and is also set to launch an online Internet Capacity Assessment resource, which can give insight into a person’s understanding of the risks of being online. And to help increase the support of vulnerable people by professionals, Cyber Spider - which works nationally from its headquarters in Rotherham - also delivers training and education directly to those working in brain injury care, and works with case managers and social workers throughout the UK. With demand for its services growing strongly, in the wake of a surge in online use during the pandemic, Cyber Spider is adding new people to its team around the country, continuing the growth it has seen since being established in 2017. “For people whose brain injury came through illness or injury, they will have had a life before that, and with that

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will be a digital footprint. But now, how capable are they of managing the threats and risks that go with being online and being on social media?,” says Jeff Goodright, co-founder of Cyber Spider, whose background is in family liaison work and cyber crime with South Yorkshire Police. “While the risks of something serious happening may be low, there is still a risk. And what would the impact be on an already vulnerable person? That’s why it’s so important we do all we can to prevent that happening.” Cyber Spider carries out individual assessments of each person and their unique needs and circumstances, and makes recommendations around the threats and risks. “We’re passionate about trying to put people in a better place. It’s difficult for us all to navigate the cyber world but imagine trying to do that with a brain injury. There are so many things to consider,” says Jeff, whose co-founder Garry Kelsall has expertise in assertive technology and websites. “By becoming more aware of the risks and what we can do to protect vulnerable adults, we can stop this from happening.” And as well as supporting and assessing individuals, Cyber Spider’s training for professionals is proving equally valuable. “It’s really important the professionals working with vulnerable adults are aware of the risks so they can do something about it. We do a lot of training, and the word of mouth recommendations we receive are increasing, it’s such a vital aspect of a client’s safety,” says Jeff. “We also try and tie in with the MDT on assessments, the findings can be very valuable. “If professionals better understand how to put cyber safeguarding measures in place, then they can offer better levels of safety to their clients.” 94


FLAVOURS THEY’LL LOVE IN A TEXTURE THEY NEED

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At Wiltshire Farm Foods, ensuring your patients can rely on delicious, nutritious meals is our number one priority. Whether it’s breakfast, main meals, snacks, or something sweet for afters, our Softer Foods range focuses on quality, flavoursome dishes that your patients can enjoy every day. We’ll even deliver them straight to their freezer, with safe, no contact delivery. Not convinced? Request a free tasting session today and we’re sure you’ll find that the proof isn’t just in the pudding, but in every other tasty course too! Level 4 Pureed Level 5 Minced Level 6 Soft & Bite-sized

A dedicated range for those with swallowing difficulties. Over 80 dishes in IDDSI Levels 4, 5 and 6 and made in line with IDDSI standards including breakfast, snacks and desserts. Helping you to help your patients. No contract. No commitment. Order as much or as little as you like. Reassurance that your patients are eating well at home.

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UK

UK Aquatherapy Specialists Aquatherapy Specialists

Aquasure UK design build and maintain Aquatherapy pools nationwide.

Aquasure poolsnationwide. nationwide. AquasureUK UKdesign designbuild buildand andmaintain maintain Aquatherapy Aquatherapy pools We pools. Wehave haveover over20 20years yearsexperience experiencein inAquatherapy/Hydrotherapy Aquatherapy/Hydrotherapy pools.

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

•Nationwide Nationwide design service design andand buildbuild service

Nationwide design and build service

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

Underwater massageequipment equipment Underwater massage

Underwater treadmills treadmills •Underwater Underwater Coloured LEDtreadmills lighting

LED lighting •Coloured Coloured LED lighting Wellness products

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

for all Aquatherapy pools

UK

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

Tel: 0161 764 5530

UK Mob: 07887630071

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

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

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

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