NR Times (Q2 2019) by aspectpublishing

ISSUE 10 Q2 2019

NATIONAL CRISIS Getting to grips with the brain injury epidemic CHINA REPORT The accelerated surge of rehab services

QUARTERLY

Enter stage left

WHY DRAMA IS THE RISING STAR OF REHAB OUTSIDE AND

RUSSIAN

ON THE MEND

REVOLUTION

The healing powers of the great outdoors

Moscow innovators seek patients and partners

YOUNG

PARKINSON'S

‘Stop treating us like geriatrics’

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WELCOME

EDITOR'S NOTE

Welcome to NR Times, your quarterly update on neuro-rehab issues and developments affecting professionals and patients.

Technology can transform the lives of neurorehab patients. It boosts life quality, recovers lost functions and increases independence. And innovation in this field is thriving currently, bringing a steady stream of new devices to the fore – as we report this quarter. A common drain on tech’s power to change, however, is lack of access, as highlighted in stark figures published recently by the Royal College of Radiologists. They show that most patients rushed to A&E departments with severe head injuries do not receive a scan quickly enough. This, the college says, puts them at risk of long-term health problems. Only 41 per cent of head injured patients had a CT scan within an hour of reaching an emergency department last year, according to an official report cited in The Times. Scanning enables staff to decide between emergency surgery or transferral to a neurological intensive care unit. Perhaps better access to faster CT scans should be on the radar of the UK’s acquired brain injury (ABI) all-party parliamentary group, which continues to go from strength to strength. There have now been three debates in Parliament (one of which is covered in this edition) on the back of the group and MP awareness of brain injury issues is rising. Meanwhile, Britain’s struggle to get to grips with ABI is, of course, mirrored in other countries, including Russia and China, both of which we report on in this edition. Like the UK, they too face the challenge of an ageing population with increased incidences of injury, stroke and neurological disease. Both are stepping up the fight against such challenges, albeit in different ways. Also in these pages, why drama therapy is now centre stage in rehab, how young Parkinson’s

patients are carrying on regardless and new findings on the power of the great outdoors. We hope you enjoy our 10th edition and wish you a wonderful summer whatever you get up to. Andrew Mernin Andrew@aspectpublishing.co.uk

P.S. If you can’t wait until September for our next edition, find us online at nrtimes.co.uk for more stories from the world of neuro-rehab.

Sales Jane Reed / Jane@aspectpublishing.co.uk Chloe Hayward / Chloe@aspectpublishing.co.uk Design Aimee Thompson aimee@aspectpublishing.co.uk Editorial contributors Alan Parr, Peter McCusker, Deborah Johnson, Peter Jackson

Published by Aspect Publishing Ltd 11 Lansdowne Terrace, Newcastle upon Tyne, NE3 1HN. Registered company in England and Wales. No. 10109188. Features labelled 'sponsored' are paid for by our sponsors who support the production of this magazine.

Credits - Page 36 - image resource from Freepik.com

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CONTENTS

NEWS Cannabis update, MS breakthrough, landmark decision-making case and more

YOUNG PARKINSON'S 'Stop treating us like geriatrics'

STROKE OF GENIUS Innovators exploit brain's inability to separate the real from the imagined

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GOAL GETTERS New light on the priorities of young brain injury survivors

BREAKING BARRIERS Travel and mobility tech in focus

CONTENTS

NATIONAL CRISIS Debating the UK brain injury problem

RUSSIAN REVOLUTION Moscow pioneers head to Britain

TABLES TURNED Stroke professional faces her own recovery battle

COVER STORY

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OUTSIDE INFLUENCE How the great outdoors can turbo-charge severe injury rehab

How drama is the rising star of rehab

EVENTS Dates for your diary in the months ahead

CLOCKING OFF Notes from the sidelines of neuro-rehab

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ANALYSIS The parents of a severely epileptic nine-year-old girl recently had the cannabis medicine they need for their daughter seized by Border Force officials for the second time. This is an unbelievable situation; a slow start was perhaps inevitable but we need to find ways to take this from three to one million. We have to help turn patient dreams into reality

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Emma Appleby had arrived at Gatwick Airport from Holland with the cannabis medication for daughter Teagan after a private consultant in the UK had written her prescription. She told The Guardian newspaper: “There seems no end to the stress and trauma of trying to access the medical cannabis that I have proved beyond doubt transforms the life of my daughter. “I am exhausted and shattered but I’ve seen how this medicine transforms my daughter’s life. I have to find a way forward. The NHS just won’t prescribe. This is unforgivably cruel and unfair.” Border Force officials told Ms Appleby and her partner Lee Moore that they need an import licence - another barrier to patients seeking the medicinal benefits of cannabis. Teagan has a rare chromosomal disorder

called Isodicentric 15, as well as LennoxGastaut syndrome, a type of epilepsy which causes up to 300 seizures a day. Others who use medical cannabis say it can also help with muscular dystrophy, anxiety, the management of spasticity after spinal and brain injuries, chronic pain, and a host of other conditions. In July last year, Hannah Deacon, the mum of epilepsy sufferer Alfie Dingley, was instrumental in securing changes in UK regulations following her battle to access medical cannabis for her son. Medical cannabis supporters believe that over one million people are using cannabis to self-medicate their health conditions but only a handful have received a prescription since medical cannabis became legal in the UK last November.

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Baroness Meacher Baroness Meacher, a long-time advocate for medical cannabis, is unimpressed. “This is an unbelievable situation; a slow start was perhaps inevitable but we need to find ways to take this from three to one million. We have to help turn patient dreams into reality.” Ms Deacon said: “We find ourselves in a disgraceful situation; many doctors are telling me they are being threatened with the sack if they prescribe medical cannabis, and some parents are telling me that if they ask for medical cannabis for their child, their doctors are saying they will report them to social services.” Prof Mike Barnes, a neurologist and one of the country’s leading experts on medical cannabis, says the regulations as drafted by the government are more than adequate, allowing clinicians wide scope to prescribe. He said: “The government’s regulations themselves are surprisingly liberal. I don’t know of any other country aside from Canada that has issued so few restrictions on the use of medical cannabis. “The overwhelming problem is the doctors. They are hiding behind the guidelines which have been issued by their professional bodies. “There is strong evidence on the benefits of

medical cannabis and it is extraordinary that they are not prepared to embrace this yet.” One Midlands hospital has even posted a notice for patients saying that “pain consultants and allied staff will not be recommending or prescribing medical cannabis for chronic pain patients”. As a result of this impasse, many patients have decided to grow their own cannabis medicine. Carly Barton, from Brighton, saw her NHS doctor write the first prescription for cannabis but this was unanimously rejected by the Brighton Medical Governance Group due to "insufficient evidence" that it would alleviate her chronic pain. This prescription would have superseded her private one, which was costing in the region of £1,300 a month. This has subsequently led to the launch of the ‘Carly’s Amnesty’. Those participating must sign a statement that they are being treated by a specialist clinician, have at least one symptom listed by the National Institute for Health and Care Excellence for cannabis-based medicine, and have been denied access to medical cannabis. They must promise to grow no more than nine plants and must do so in a private place, such as a garage, attic or back garden, and inform their local police. Ms Barton said: “I am going to openly break the law until I can access my medicine or they give me some kind of exemption…(but) I do not see myself as a criminal.” The General Medical Council (GMC), which works to protect patient safety and improve medical education and practice across the UK, said that as with any other prescription, doctors must make decisions about prescribing cannabis-based products ‘only when they are satisfied that the drugs or treatment serve the patient’s needs, based on the evidence available’. A spokesperson said: “When prescribing an unlicensed medicine, doctors must be satisfied that there is sufficient evidence or experience of using the medicine to demonstrate its safety and efficacy. “Doctors should follow our existing prescribing guidance, and take into account the clinical guidance issued by NHS England, the British Paediatric Neurology Association, the Royal College of Physicians and the Royal

The government’s regulations themselves are surprisingly liberal. I don’t know of any other country aside from Canada that has issued so few restrictions on the use of medical cannabis

Professor Mike Barnes.

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ANALYSIS College of General Practitioners. “The regulations set out that only doctors on the specialist register can prescribe these treatments.” A spokesperson for the Royal College of Physicians said: “The public would expect us to only make recommendations based on quality evidence and at the moment there isn’t any. We would welcome high-quality studies into the use of cannabis-based medicinal products for pain treatment.” It referred to an Australian review of the evidence of cannabis use in the treatment of pain published last year. The spokesperson said: “This analysis showed that, statistically, the risk of harm is greater than the potential benefit.” “We have undertaken to keep our recommendations under review until formal guidance is published by the National Institute of Health and Care Excellence, expected in October 2019.”

Legal and medical position

On November 1, 2018, all cannabis-based medical products were moved out of Schedule 1 of the Misuse of Drugs Regulations 2001. GPs wanting to prescribe cannabis for a patient have to refer them to one of 80,000 specialists on the GMC register. These medics can also prescribe other cannabis-based drugs, known as ‘specials’, but in doing so they also have to seek approval from a higher medical body. In practice, doctors are currently relying on the restrictive guidelines of the Royal College of Physicians (RCP) and the British Paediatric Neurology Association (BPNA). The RCP says there is not enough evidence of the therapeutic benefits of cannabis for chronic pain. However, this runs contrary to the position taken by the Chief Medical Officer of the UK, Professor Dame Sally Davies. Last year she concluded: "There is now conclusive evidence that cannabis is effective for the treatment of chronic pain in adults." The BPNA has meanwhile said that Epidolex, a pure form of CBD, might be considered for use in children with epilepsy only when all other options – including surgery – have been exhausted. The substantial evidence that children with

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epilepsy respond well to full-extract cannabis, including THC, was discounted. Prof Mike Barnes said: “Together, these guidelines are incredibly restrictive, and some doctors are conveniently interpreting them as mandatory, which they aren’t.”

Cannabis campaigner appalled

The inability of the medical profession to meet the needs of its patients has come under fire from campaigners. Peter Reynolds, of CLEAR, said: “It is no longer against the law to use cannabis for medicinal purposes and I congratulate Sajid Javid on taking the law out of the equation completely. “The problem now is an appalling ignorance of the science and the evidence amongst doctors. While lack of knowledge can be excused, bigotry, refusal to educate themselves and placing their caution and fear above the interests of patients cannot. “The guidelines have been prepared by people who are still locked in the ‘reefer madness’ mindset that cannabis is a highly toxic dangerous substance. "They are completely misinterpreting the scientific evidence. “This is at its most tragic with their refusal to treat our kids. It’s sheer madness that under no circumstances will they allow cannabis with THC to be given to youngsters with epilepsy; a stance which appears to be based on studies about adolescents smoking highTHC content cannabis as a recreational drug. “This is absolutely nothing to do with children receiving small doses of THC as a medicine, under medical supervision. It’s incredible that a highly qualified professional can conflate these two things. “Yet at the same time they will dish out handfuls of opioids, and if these are taken half a dozen at once people will kill themselves. It’s difficult to understand. It’s pure ignorance and prejudice.” CLEAR is encouraging its supporters to take the law into their own hands: “The dreadful NHS guidelines are preventing patients from accessing the medicine they need and it seems only private doctors have the courage to make their own decisions. "In these circumstances the ethical and economical choice is to grow your own,” says Reynolds.

Peter Reynolds, of CLEAR

The guidelines have been prepared by people who are still locked in the ‘reefer madness’ mindset that cannabis is a highly toxic dangerous substance

www.ukabif.org.uk/events/ukabif-annual-conference-11-november-2019 NRTIMES 11

Judgement ruling could change young people’s welfare decisions A judge has clarified the law surrounding how decisions affecting the future of young people with learning difficulties are made. The parents of three young people with learning disabilities launched legal action in the Court of Protection to challenge the current welfare deputyship law, which relates to how decisions are taken on behalf of adults over 18. Under the current law, the parents are responsible for their children up until they become adults, at which point the Mental Capacity Act states that decisions on their behalf should be taken collectively by everyone interested in their welfare, and the family should only be appointed as welfare deputies in ‘the most difficult cases’. The families from London, Brighton and Windsor instructed specialist public law and human rights lawyers at Irwin Mitchell to bring a test case. During a court hearing in the Court of Protection in March, lawyers argued that the Code of Practice which guides the courts’ interpretation of the Mental Capacity Act should be amended. The Honourable Mr Justice Hayden, Vice President of the Court of Protection, then handed down a judgment ruling that there should not be a starting presumption against the appointment of a welfare deputy and that the “wording of the Code of Practice… requires to be revisited.” Alex Rook, a partner at Irwin Mitchell who represented the families, says: “This challenge was brought because our clients and many other parents believed that the law, which stated that they would only be appointed as deputies in ‘the most difficult cases,’ needed to be changed. “All they want is to be able to help their children have the best chance in life but felt

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All they want is to be able to help their children tp have the best chance in life but felt this was not happening because of how the law was interpreted

this was not happening because of how the law was interpreted. “Our clients appreciate that the court will need to consider every application on its merits, but welcome today’s ruling. They hope that now the judge has clarified that the code needs to be redrafted, making it clear that there is no presumption against them being welfare deputies, it will become more common for family members to be appointed as welfare deputies. "Although the judge has suggested that in the majority of cases a welfare deputy will not be needed, our experience and that of our clients is that in many cases it would indeed be in the young adult’s best interests for their family to be able to continue to make decisions in their loved one’s best

interests where they are unable to make the decision themselves.” During the case it was argued that families were ignored and decisions were being taken without them being consulted. The families said that, frequently, these decisions were taken by social services departments who did not know their children and that funding was a more important factor in such decisions than their children’s best interests. At present, parents are only appointed as ‘welfare deputy’ status in rare and complex cases. Among the parents behind the case was Rosa Monckton, 65, a disability rights campaigner whose daughter Domenica, 24,

has Down’s syndrome. Also involved was Caroline Hopton who has two sons with autism including Oliver, who is non-verbal and has sensory and eating problems. Because of his needs he lived in residential care when he was younger, returning home in September 2017 after he was abused by the carers who were supposed to be supporting him. A member of staff was found guilty in June 2019 of “ill-treatment or wilful neglect by a care worker, contrary to Section 20(1) of the Criminal Justice and Courts Act 2015,” and is awaiting sentencing. Meanwhile, Lucy and Simon Mottram’s son Oscar, aged 24, has autism and suffers from severe learning difficulties, epilepsy and anaphylaxis.

They joined the campaign after the family faced huge difficulties when Oscar’s care moved from children to adult services within the local authority. Lucy said: “All our efforts go into ensuring that Oscar feels valued and receives the support he needs to flourish. Our experience is that while others involved in his care may be well intentioned, they do not know him and so cannot make informed decisions as to what is best for him. “Today’s announcement is a step in the right direction to ensuring correct decisions are made when it comes to the futures of all young people with disabilities.” Victoria Butler-Cole QC of 39 Essex Chambers acted for the three families in this case.

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Stroke deaths halved in past decade

Fatigue findings should be a wake-up call

The number of deaths from stroke has been cut in half over the past 10 years, new research has shown. The total number of strokes among older people has also fallen, with better treatment and medical interventions being credited although a rise in strokes among people aged between 35-54 has been attributed to rising obesity and type 2 diabetes. The study, published in the British Medical Journal, shows that the overall number of strokes fell by 20 per cent between 2001 and 2010. After adjusting for age and other potential factors, stroke deaths decreased by 55 per cent during the study period. Most strokes are in older people, often in their 80s, which is where most of the prevention effort has been. Of 425,000 strokes in the decade to 2010, about 33,000 were in people under the age of 55. The report also found that the NHS was spending about five per cent of its budget on caring for people who have been affected by stroke. Olena Seminog, of the Nuffield department of population health at Oxford University, who is one of the authors of the report, said looking at stroke prevention is key. “[The fall in deaths] is very good news but we should still appreciate the importance of prevention because people who have a stroke do have a high chance of surviving now, but many survivors will still [have] a lot of disability,” she said. “That can be sometimes severe. It will have an impact on their lives and their families’ lives.”

Widespread misunderstanding about chronic fatigue is leaving brain injury survivors feeling socially isolated and discriminated against, a study shows. Brain injury charity Headway’s research found that almost 90 per cent of brain injury survivors' lives are negatively affected by ‘pathological fatigue’, with 80 per cent saying their lives would be improved if people had a better understanding. In addition, almost 70 per cent of the 3,166 respondents to the charity’s survey stated that they have been unfairly judged or treated as a result of people not

understanding their fatigue. Fatigue – or excessive tiredness – is one of the most commonly experienced effects of brain injury. Indeed, it is the most commonly cited effect of brain injury reported by the 11,000 callers to Headway’s helpline each year. Peter McCabe, chief executive of Headway, says: “It is clear that there is a distinct lack of understanding of pathological fatigue across the UK. “As a society, we need to wake up and recognise the debilitating effects fatigue can have on people living with the longterm effects of brain injury. “It’s very concerning that so many of the people we support have told us they feel they have been unfairly treated due their condition.”

Of 425,000 strokes in the decade to 2010, about 33,000 were in people under the age of 55

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Bipolar patients seven times more likely to develop Parkinson’s People suffering from bipolar disorder are seven times more likely to develop Parkinson’s disease, a new study has found. While a link has been made for some time between the degenerative disease and depression, this new research has prompted hopes that the causes behind the condition can be found. The new study was carried out using two groups of adults in the Taiwan National Health Insurance Research Database. Members of one group — over 56,000 individuals — were diagnosed with bipolar disorder between 2001 and 2009. The other — 225,000 individuals — had never been diagnosed with the disorder. No one in either cohort had received a Parkinson’s diagnosis and all the patients were over 20. Researchers ensured the two groups had similar ages, socioeconomic status and other traits that might influence health. The researchers followed up with all 278,000 people in 2011 to see how many had been subsequently diagnosed with Parkinson’s. They found that 0.7 per cent of the patients with bipolar disorder ended up developing the disease — about one in 140. But for those without the disorder, the prevalence of Parkinson’s was about one in 1,000.

New centre gets green light Plans for new accommodation and a day care centre for brain injury patients in Suffolk have been approved. Headway Suffolk’s application for a new base, which will be built on old airfield land in the Ravenswood area of Ipswich, has been rubber stamped by Ipswich Borough Council. The centre will replace the charity’s base at Ransomes Europark, which it has outgrown, and feature a two-storey day care centre and offices as well as a 24-bed accommodation block for treating those with neurological conditions.

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Nanotubes enable travel of Huntington’s toxic protein A toxic protein linked to Huntington’s disease can move between neurons through a nanotube tunnel, scientists have revealed. The findings from Scripps Research suggest that this tunnel is initiated by a protein called Rhes, and the study improves understanding of how and why the disease attacks and destroys certain brain cells. People with Huntington’s disease inherit a damaged protein that is somehow complicit in destroying brain cells. Scientists discovered this protein in 1993 but are still piecing together its role in the

degenerative disease. Scans show Huntington’s disease brains are shrunken and degraded, and as the neurons deteriorate, people lose motor control, can have emotional problems and their thinking and memory suffer. Symptoms usually begin around the age of 30 to 40 and last 15 to 20 years until death. A rarer and more aggressive form of the disease affects children, cutting their childhood and lives short. The new research, by neuroscientist Srinivasa Subramaniam, an associate professor in the Department of Neuroscience at Scripps Research, in Florida, is seen as an important development in the study of Huntington’s. “We are excited about this result because it may explain why the patient gets the disease in this area of the brain called the striatum,” he said.

Childhood brain injury conference The line-up for a UK conference which puts the future of paediatric acquired brain injury under the spotlight has been announced. The Children’s Trust event, ‘Building the future of childhood brain injury: where do we go from here?’, promises to take a visionary look at paediatric acquired brain injury and explore what the future may hold. Speakers at the conference, at the Royal Society of Medicine in London on 6 September, include Dr Charlie Fairhurst, consultant paediatric in neurodisability and head of children's neurosciences at Evelina London Children’s Hospital. Also speaking at the event is Professor Vicki Anderson, director of clinical sciences research at Murdoch Children's Research Institution in Melbourne, Australia. Dr. Anderson is internationally-renowned for her work in disorders that impact a child’s brain and neurological function, including both developmental and acquired disorders. With 450+ peer-reviewed publications and US$35M in competitive grant funding, her recent work has focused on translating her early career findings into clinical practice to optimise child outcomes from brain injury. She is an author of the Test of Everyday Attention for Children and is currently working on low burden, e-health approaches to parent-focused psychosocial treatments as a means of maximising child outcomes and improving family function. Joining her will be Dr Stacy Suskauer, research scientist and co-director of the Center for Brain Injury Recovery, Kennedy Krieger Institute, USA. She oversees clinical services at the Institute and provides direct care to children with acquired brain injury of all severities. Under her leadership, the Institute’s Rehabilitation Continuum of Care has expanded to include thriving programs for children with concussions and those with disorders of consciousness. Dr Suzanna Watson, consultant clinical psychologist and lead for paediatric

neuropsychology services, Cambridge and Peterborough NHS Foundation Trust, also joins the speaker line-up, alongside Helen Gill-Thwaites MBE, of the Royal Hospital for Neurodisability, and Dr Karen Elliott, a SMART Master at the Institute of Neuropalliative Rehabilitation. For a full speaker line-up visit www.thechildrenstrust. org.uk/conference. Delegates will also have the opportunity to network with expert clinical professionals, including consultants, doctors, surgeons, nurses, therapists and medico-legal practitioners, to discuss challenges and best practice. Chief executive of The Children’s Trust, Dalton Leong, said: “Since its launch in 2017, The Children’s Trust’s National Brain Injury Conference goes from strength to

strength and this year is no exception. The conferences have provided an invaluable insight into childhood brain injury and rehabilitation; and attract top professionals from across the world. This year, with such brilliant speakers and over 250 industry professionals expected to attend, our conference is set to be an inspiring event for those working with children and young people with brain injury.” With the support of conference event partner Irwin Mitchell, and various exhibitors, the Children’s Trust is offering a special price for NR Times readers. Book today and receive 20 per cent off ticket prices using promo code ‘NRTimes’. To book visit www.thechildrenstrust.org.uk/ conference.

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Mild brain injuries linked to long-term impact

Scientists get closer to root causes of MS A major scientific advance has been made in research into multiple sclerosis (MS) which is hoped will lead to the development of preventative treatments for the condition. An international team of researchers, led by the University of British Columbia, found mutations in 12 genes believed to be largely responsible for the onset of MS in families with multiple members diagnosed with the disease. For the study, researchers sequenced all known genes in three or more MS patients from 34 families and examined the genetic variants in family members both affected and unaffected by MS. By looking at the genes of 132 patients, they identified 12 genetic mutations that can lead to an overactive autoimmune system that attacks myelin, the insulating layer around nerves in the brain and spinal cord. Of people diagnosed with MS, only 13 per cent

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are believed to have a genetic form of the disease, but those presenting the mutations identified in this new study were estimated to have an up to 85 per cent chance of developing MS in their lifetime. "These genes are like a lighthouse illuminating where the root cause of MS is," said lead author Carles Vilariño-Güell. Vilariño-Güell, assistant professor in the university’s faculty of medicine's department of medical genetics, now aims to develop cellular and animal models with the identified mutations to mimic the biological processes responsible for the onset of MS in patients, with the goal of eventually developing preventative treatments for the disease. "We have treatments that address the symptoms of MS, but not the causes. People with MS take drugs that reduce the attacks, but the disease still progresses," said Vilariño-Güell. "Now, with knowledge of these mutations, which suggest a common biological process that leads to increased inflammation in MS families, we can try to address the root causes.”

People who suffer a mild traumatic brain injury (TBI) may be more likely to have lasting functional deficits than patients who experience other types of injuries, a new study has suggested. Although long-term cognitive and physical impairments are well known after-effects of moderate to severe TBIs, doctors are less certain of the expected course of recovery for people with mild forms of the injury, researchers from JAMA Neurology have found. The new study, from researchers in the United States, involved 1,154 patients with mild TBIs and 299 patients with orthopaedic injuries but no head trauma. Two weeks after their injuries, 87 per cent of brain injury patients and 93 per cent of the other trauma patients reported functional limitations - a difference too small to rule out that it was due to chance. The groups remained on a similar trajectory six months after their injuries, but after a year, brain injury patients fared worse - 53 per cent still had functional limitations, compared with 38 per cent of the other trauma patients. “Unfortunately, many patients with mild traumatic brain injuries do not get any follow-up care after being discharged from the hospital,” said study leader Lindsay Nelson, from the Medical College of Wisconsin in Milwaukee. “We need to do more to learn how to improve on the natural course of recovery so patients can get back to their lives more quickly.”

Two weeks after their injuries, 87 per cent of brain injury patients and 93 per cent of the other trauma patients reported functional limitations

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MPs invited to screen for brain injury MPs were invited to attend Parliament for a brain injury screening on 25th June to raise awareness of brain injury, as well as gain insight into the screening process used within prison populations. Chris Bryant MP, a frequent advocate of brain injury awareness and chair of the all-party parliamentary group on acquired brain injury, hosted the event in which MPs were screened using the Brain Injury Screening Index (BISI), a tool provided by national charity The Disabilities Trust. The charity conducted research into male and

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female prison populations and found nearly half of males (HM Prison Leeds, 2014) and nearly two-thirds of female prisoners (Making the Link, 2019) screened positive for a history of brain injury. The cognitive problems associated with brain injuries can significantly impact engagement in rehabilitation programmes and contribute to reoffending. Despite this, there is no regular testing for brain injury conducted in adult prisons in the UK. The BISI was created in response to the research to help assess whether an offender has a history of brain injury and may require extra support. The charity aimed to highlight to MPs the impact of brain injury on the criminal justice system, the difference a screening tool can make and demonstrate just how quick and

easy it is to administer. The trust believes that brain injury should be included in health assessments on entry to prison and staff should be trained in brain injury awareness. Chris Bryant said: “All the evidence suggests that simple screening of all prisoners for brain injuries followed by appropriate support could help rehabilitate offenders, cut reoffending and improve prisons. It’s time we followed the science.” Dr Ivan Pitman, consultant clinical neuropsychologist at The Disabilities Trust, said: “The needs of somebody in prison with a brain injury are likely to be complex, and the lack of understanding and identification of a brain injury results in a higher risk of custody and reoffending.”

Game of Thrones actress launches brain injury charity The brain injury charity set up recently by a star of iconic fantasy series Game of Thrones has made good progress since its launch. Emilia Clarke, who gained global fame playing Daenerys Targaryen in the show, launched a charity to support young people with brain injuries. In 2011, Clarke suffered two life-threatening brain aneurysms while filming for the show. SameYou aims to help young people around the world to access the neuro-rehab services they need to aid their recovery.

And in its first few weeks of existence, it surpassed its £100,000 fundraising target through donations, including those from Game of Thrones fans around the world. The actress, who was left close to death after her aneurysms, is now channelling her efforts into supporting others who are forced to deal with the aftermath of such a condition. Emilia, now 32, revealed her illness came to light following the first season of Game of Thrones, when she experienced stabbing, constricting pain in her head along with extreme fatigue. An MRI scan, showed she had a subarachnoid haemorrhage (SAH), a type of stroke caused by bleeding into the space surrounding the brain.

After surgery, she then had aphasia - an impairment of language - and couldn’t even recall her name. This passed after a week, but she was told she had a second, smaller aneurysm, which doctors believed would lie dormant. However, after finishing season three of Game of Thrones, a brain scan showed that the aneurysm had doubled in size. She underwent further surgery but the procedure was unsuccessful so she underwent a more intrusive surgery, through the skull. Emilia says that she is now “one hundred per cent” and her recovery has exceeded her own hopes and expectations, but wants other people to access the same levels of treatment and care she received.

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Drug study shows promise for TBI patients An anaesthetic has been shown to prevent long-term damage associated with the impact of a traumatic brain injury (TBI). Research has affirmed that xenon can prevent brain tissue damage that would result in long-term cognitive problems if administered within a few hours of the TBI. The study, from Imperial College London and Johannes Gutenberg University Mainz, builds upon previous research which has shown the gas to have a neuroprotective property in animals subjected to a controlled cortical impact. This study tracked three different animal groups: those given a TBI followed by a placebo gas, those given a TBI followed by xenon gas, and a healthy control with no TBI. A 20-month follow-up period allowed the researchers to examine whether the xenon treatment reduced long-term damage resulting from the TBI. While those animals with a TBI but no xenon treatment ultimately developed late-life cognitive damage, the xenontreated mice seemed to be protected from this long-term decline. The xenon group displayed similar life expectancy to the healthy control group, and posthumous brain examinations revealed the xenon treatment lowered long-term brain inflammation and neurodegeneration. "We have looked at very long-term outcomes, up to 20 months after TBI in mice," corresponding author Robert Dickinson said. "This is very rarely done in animal studies and is equivalent to following up human TBI patients until their 80s. “The finding that only a short treatment with xenon can have beneficial effects on cognition, survival, and brain damage almost two years later suggests that xenon might in future prevent cognitive decline and improve survival in human TBI patients."

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WHO issues global epilepsy warning Three quarters of people living with epilepsy in low-income countries do not get the treatment they need, increasing their risk of dying prematurely and condemning many to a life of stigma. This is according to a new report from the World Health Organisation (WHO), the International League Against Epilepsy and the International Bureau for Epilepsy. Dr Tarun Dua, from the WHO’s department of mental health and substance abuse, says: “The treatment gap for epilepsy is unacceptably high, when we know that 70 per cent of people with the condition can be seizure-free when they have access to medicines that can cost as little as US$5 per year and can be delivered through primary health systems. The risk of premature death in people with epilepsy is up to three times higher than for the general population. In low and middle income countries, early death among people with epilepsy is significantly higher than in high income countries. This premature mortality in low and middle income countries is likely associated with lack of access to health facilities when seizures are

long-lasting or occur close together without recovery in between, and preventable causes such as drowning, head injuries and burns. Roughly half of adults with epilepsy have at least one other health condition. The most common are depression and anxiety: 23 per cent of adults with epilepsy will experience clinical depression during their lifetime and 20 per cent will have anxiety. Mental health conditions such as these can make seizures worse and reduce quality of life. Development and learning difficulties are experienced by 30-40 per cent of children with epilepsy. Stigma about the condition is also widespread. “The stigma associated with epilepsy is one of the main factors preventing people from seeking treatment,” said Dr Martin Brodie, president of the International Bureau for Epilepsy. “Many children with epilepsy do not go to school and adults are denied work, the right to drive and even to get married. These human rights violations experienced by people with epilepsy need to come to an end.” Public information campaigns in schools, workplaces, and the broader community to help reduce stigma and the introduction of legislation to prevent discrimination and violations of human rights are also important elements of the public health response.

COMMENT

How to talk about trauma By Jo Godsal, clinical director of Chroma Therapies. Rachel Swanick’s, senior therapist at Chroma, recent blog (published on the NR Times website) about how therapists, and parents, can speak to children about the disasters or tragedies they are exposed to through the media, raised a lot of questions. In particular, how to take these ideas and use them when talking about trauma, more specifically for people who have experienced their own disasters and the injuries, both mental and physical, that these leave. The impact of a brain injury is notoriously hard to predict – some seemingly mild concussions can have devasting consequences, whilst others may walk away from something that seems terrible and recover quickly. The emotional impact is equally unpredictable and unique to each individual and each set of circumstances and does require ongoing assessment. Professionals and families need to be aware of psychological trauma. This may be in the form of post-traumatic stress disorder (PTSD), which typically involves flashbacks and invasive thoughts. It can also be more subtle, with changes in mood, with the impact on questions of one’s identity that may come about through dealing with the aftermath of an injury, and around motivation, as well as loss and grief. The mental health of family members can be affected too, from PTSD - especially if someone has witnessed a traumatic event - to the impact of loss, change to their own identity as a carer for instance, and the ongoing challenges of supporting someone in rehab. Psychological therapies, be that psychotherapy, arts therapies or cognitive behavioural approaches, are key to working with this, and a key part of any rehab. The mental health element can prevent someone from engaging in rehab, or it may well be the most important part of recovery. As well as the psychological therapy input, there is a key role for anyone working in rehab to be able to think and talk about trauma. The approaches in Rachel’s blog are really helpful,

but first we need to think about regulation: Trauma can’t become a taboo subject, but equally we must not overwhelm someone. Trauma can have the effect of leaving someone completely dysregulated. This is the fight, flight or freeze response being triggered by traumatic memories or feelings, leading to hyper- or hypo-arousal. In these states the thinking brain is shut down, so having a conversation at this stage is pointless. We need to help people to be in what is called 'the window of tolerance', which is when they are able to think about the traumatic feelings or memory, without that triggering. The key is being able to recognise when someone might start to move into these states. Hyper-arousal is the fight or flight mode, so someone’s heart rate might start to race, they may become agitated, pupils may dilate, skin becomes pale and cold or clammy, and their cognitive processing becomes disorganised. Hypo-arousal is the freeze mode, so the heart rate may slow, skin colour may become flushed, dry and warm to the touch, and cognitive

processing becomes disabled. In these states someone simply needs help to regulate themselves – this is not the time to discuss anything connected to the trauma. A therapist may well work on widening the window of tolerance in order to enable trauma work, thereby building up someone’s ability to manage and regulate themselves. For anyone else, the focus is more on recognising when someone is in a fit state to talk about difficult things, and when to step back and concentrate on helping someone feel calm and in control. For children suffering from long term distress following any traumatic event, it could be worth trying some creative therapy, which focuses on the nonverbal elements of communication in a safe place, such as: • Worry dolls - put your worries in the doll and put her in the box • A positive pot - each day, write something lovely that has happened on a post-it and pop it in a pot. Read them back every few months or when your child is feeling sad • Worry time - a ten minutes slot each day where you can write down all of your worries.

Anyone affected by these issues can contact Chroma Therapies via sayhello@ wearechroma.com or 0330 440 1838.

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INSIGHT

Notes from Nanjing NR Times’ writer Andrew Mernin attended the largest neuro-rehab event in the Asia Oceania region recently and made a few notes along the way…

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In a packed auditorium not far from the Yangtze River, hundreds of delegates are on their feet clapping vigorously. They have just discovered that one of their national heroes has been sitting among them undetected all evening. Xia Boya is China’s rehabilitation poster boy (or man, since he’s now 70). In his twenties during an attempt to scale Everest, his team hit bad weather just 250 metres from the summit. Xia gave his sleeping bag to a teammate who was struggling to survive. But his kindness came with a heavy cost – frostbite and the subsequent amputation of both his legs. Yet 43 years after that failed mission, he finally achieved his dream of climbing the world’s

most unforgiving peak. The televised feat from last year was replayed on big screens at the 2019 Asia-Oceania Congress for Neurorehabilitation in Nanjing – China’s ancient capital. The sight of Xia dragging himself up the final few metres made for an emotional opening to the conference. Applause broke out when an unassuming pensioner in a tracksuit stood up in the crowd and waved. Xia Boya himself was here for this confluence of neuro-rehab. Not a single chair is empty in this grand hall. Scores of people standing up are lining the outskirts of the room. Most striking, however, is the fact that the vast majority of local delegates are in their late teens or twenties. This is perhaps indicative of China’s accelerated interest in rehabilitation. A surge of students and young professionals shooting for careers related to severe injury and neurological conditions is emerging. Partly this is driven by soaring demand. A landmark paper on rehabilitative medicine in 2009 reported that China had a personnel gap of 15,000 rehabilitative specialists and 28,000 therapists. While no update on this is available,

INSIGHT

trends suggest that the need for more rehab specialists is intensifying. By 2050 it is expected that the proportion of China’s population which is 60+ will have risen from 15.2 per cent in 2015 to 36.5 per cent, putting pressure on many areas of healthcare. Around 2.5 million people in China suffer strokes every year, with 70 to 80 per cent losing the ability to perform routine activities and requiring care. A 2017 paper reports that only 11.5 per cent of patients undergo some form of rehabilitation within the first week of their stroke; 42.4 per cent do not receive any rehabilitation. Meanwhile, the Chinese Journal of Traumatology reports an estimated 3m to 4m incidences of traumatic brain injury every year. The sheer number of neurological disease cases in a population of 1.3bn also creates massive demand for newly qualified rehabilitation workers. The number of Parkinson’s cases, for example, is expected to hit 5m in China by 2030, according to the World Federation of Neurorehabilitation. Also driving heightened interest in neuro-rehab careers is the rapid reform of China’s healthcare system generally. Over the last decade, the Chinese government has been in the process of expanding social health insurance, reforming public hospitals and strengthening primary care. In 2016 it announced the ‘Healthy China 2030 blueprint’ – a plan to provide universal health security to every citizen by 2030. China’s is an insurancebased system whereby almost a third of citizen health costs are paid for by the individual. The aim is to reduce this to 25 per cent by 2030. Investment which helps to improve, and better connect, services, is being ramped up, while key goals such as earlier detection of diseases and increasing life expectancy have been put in place. All of which may aid the development of rehabilitation services. The private sector – including technology developers - may have a lead role to play in this. The exhibition floor at the congress is themed around ‘high tech integrated with neurorehabilitation’. Exoskeletons, virtual reality systems and robotics are all represented. The dominant tech forces, by some distance, however, are functional electronic stimulation (FES) and transcranial magnetic stimulation (TMS) therapy machines.

Almost every firm’s products are made in China and marketed entirely to the Chinese market. None I meet are targeting the European market, with enough demand in their homeland to fuel steep growth curves. The private sector’s role is also evident in hospital development. During the week-long conference, eight of the world’s most eminent neuro-rehab practitioners are shown around a new children’s rehab hospital in Nanjing. They arrive to a heroes’ welcome from a small army of hospital staff, photographers and management flanking the lobby. Despite my repeated protestations that I’m merely a lowly hack there to make up the numbers, I too am lauded as a globally pioneering doctor in neurorehab. I autograph a huge sign in reception, then I’m presented with a doctor’s coat and ushered into numerous photo opportunities. The chief clinician at one of India’s largest rehabilitation hospitals leans into me and whispers: “I spent 16 years at medical school, and you’ve become a doctor in 10 minutes”. My fraud continues as we move from ward to ward, with awaiting staff clapping us from one room to the next. I adopt the classic ‘doctor-walking-with-intentwith-arms-behind-the-back’ approach gleaned from Casualty and ER. We are then taken into a large boardroom. Hospital staff file in and stand around the perimeter, while we experts take up seats at the table. After a presentation about the hospital, from its enigmatic founder who was inspired to set it up by his disabled brother, the spotlight turns to us. “How would you recommend that we make a success of this new hospital?”

I frantically scribble ideas on a notepad, while my fellow luminaries from the US, Switzerland and Indonesia thankfully step forward to speak up. The microphone edges agonisingly closer to me but my sage advice is ultimately left unsaid. “Good luck for the future,” I write, while my peers feverishly pen relative essays in hospital management on a questionnaire we’ve all been handed. Back at the conference, I meet a German rehabilitation medicine physician currently involved in setting up a hospital in Shanghai. He explains an interesting distinction between European and Chinese rehab. “We’re building a rehab centre in the German tradition, mainly focusing on stroke,” he says. “What’s amazing is that we’ll do the western approach to rehab each day, and then they’ll go off and do traditional Chinese medicine activities.” He’s not convinced that all of it works towards recovery, but is open minded and admits that some herbal treatments do show promise. “Of course herbs work, its chemistry, but the rest depends on the frontal lobe. I call it the Hollywood machine. It can give you anything.” I also meet Benny, leading a Mongolian delegation of rehab professionals. There, wrestling and horse-riding accidents are among the biggest causes of brain injury, he tells me. A gaping shortfall in the number of rehabilitation doctors makes brain injury care a huge challenge – especially in the vast country’s rural areas with sparse hospital coverage. But interest in neuro-rehab is growing. It will soon host its third annual congress on the field and its development is gathering pace. The wider Asia-Oceania region, like most of the rest of the world, is typified by falling mortality rates but increasing morbidity and disability levels. Dealing with this requires new approaches utilising improved technology, knowledge, research-based evidence and services. All of these topics are covered in-depth in the conference programme in well attended talks. The appetite among Chinese delegates to learn from rehab professionals in other parts of the world is evident in every session. Momentum certainly seems to be building in China and that can only be a good thing for neuro-rehab’s global progress.

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CAREER

The developing specialisms of the neuroscience nurse The role of a neuroscience nurse varies considerably due to the variety of neurological conditions and disorders that affect patients and service users... There are many specialisms within the field of practice, from those which are linked to longterm neurological conditions such as stroke to life-limiting neurological conditions including Huntington’s disease and neurotrauma from a brain or spinal injury. Due to the variations between specialisms, one of the core elements of care for any neuroscience nurse is the person-centred approach. Most people with long-term neurological conditions can live fulfilling lives, whether this be in a hospital or care setting, and central to their fulfilment is the understanding of their wants and needs. The fundamental approach of person-centred care has become core to care delivery due to the increased emphasis from regulators such as the CQC and the Health and Social Care Act 2008. While the person-centred approach applies much more widely than being bespoke to the care of people with neurological conditions, the variations between the ways in which conditions present in service users reinforces the requirement for person-centred care. Within a single care setting it would be rare for the symptoms and behaviours of a condition to present in the same way across patients and service users. This is both a challenge, due to the nature of each individual requiring thorough and detailed ongoing assessments, and an opportunity for neuroscience nurses to deepen their knowledge about one or a cluster of related conditions. The opportunity, or sometimes requirement, to learn more about a single condition often leads to the specialisms and within care settings to a greater degree than hospitals, this has provided regionalised and providerwide concentrations of specialist support. At

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Exemplar Health Care, a specialist-nursing care provider for adults with complex needs including those arising from neuro-disability, there are units within their 27 homes which are dedicated to a single condition such as Huntington’s disease and dementia. This has allowed the units to focus on the personcentred approach while equipping the care staff, from specialist consultants and qualified nurses to care assistants, to develop a deep understanding of the conditions their residents are living with. Julie Schofield at Exemplar’s Fairburn Mewshome in Castleford shares her journey from care assistant to unit leader specialising in Huntington’s disease. What is an average day as a unit lead specialising in Huntington’s disease like? I don’t think there are many of us in health and care settings that have an average day

but there are several tasks that I do day-to-day and are the cornerstone of my work. My priorities including managing service users’ needs, writing and reviewing care plans, encouraging service users to engage with health professionals such as myself and the wider multidisciplinary team involved in their care, and managing challenging behaviours. How do you work with the wider multidisciplinary team to manage challenging behaviours? Working within a wider team is part of our day-to-day and we have close relationships with the GP, neurologist consultant, SALT (speech and language therapist), physio and nutritionist. In addition to this, my unit specialises in care for residents with Huntington’s disease and we have close links with the Huntington’s Disease Association to support our knowledge of care and research related to the disease. As well as working with external partners, within Exemplar we have a consultant psychiatrist, Dr Peter Marshall who has introduced Skype reviews to improve accessibility to timely, specialist psychiatric assessments. Prior to a Skype interview, the person needs to consent and be assessed as having the capacity to consent. The sessions are available to all residents in our homes that have been referred to the Behavioural Support Mental Health Team (BHMSHT) or Huntington’s Disease Helpline. Referrals to the BSMHT are for problems viewed as urgent by colleagues such as myself, who are within the home setting with the resident, where a sudden, significant deterioration has occurred or there has been a significant increase in risk. The Huntington’s Disease Helpline is for less urgent problems, where my colleagues and I may be becoming concerned that a resident is deteriorating, but interventions that we have previously practiced and had success with, have so far not had the desired effect. Our network internally and externally allows the team to monitor difficulties, update care plans and refer to wider healthcare support as required. Over time, the core team on my unit have been able to spot areas of concern before they have become problematic due to the knowledge that we have gained through experience and the close bonds we’ve been

CAREER

Exemplar is a specialist care provider for adults with a range of complex needs.

able to develop with residents through person-centred care. The personal relationship cannot be underestimated when caring for adults with life-limiting neurological conditions – developing trust and having an opportunity to build a bond with a resident prior to a decline has often offered them reassurance when we have had to request additional support and intervention to manage their challenging behaviours. How has your role changed during your neuroscience nursing career? My career in care began in 2006 as a care assistant and at this time, I wasn’t specialised in neuroscience care. I was initially frightened by Huntington’s disease but due to a

combination of wanting to understand more and the Huntington’s Disease Association website, I was able to understand why some of the challenging behaviours I was witnessing were happening. I progressed from care assistant to team leader before becoming a nurse and after several years I was promoted to unit leader. What has inspired you to progress in your career? All the service users I’ve worked with have been inspiring in their own ways. I’ve got to see such a small portion of their lives and even though many have experienced failed placements before I’ve met them, their personalities have always shone through. As well the joy our residents have brought, I’ve

been lucky to work with some brilliant nurses across my career and build a great team at a local level. What would you say to someone who is considering developing a neuroscience specialism? For me it feels as though the specialism chose me and, in some ways, I think that it is best for the initial interest to evolve organically. It’s no surprise that some of my fellow healthcare professionals have developed theirs based on family experience with a neurological condition and no matter what triggers the inquisitiveness, the desire to learn more is what I believe should be at the heart of any specialism. www.exemplarhc.com

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INTERVIEW

‘Yes I have Parkinson’s, but I’m no geriatric’ Far from being an ‘old person’s disease’, Parkinson’s is, sadly, becoming increasingly prevalent in younger generations. Deborah Johnson speaks to Gaynor Edwards, founder of Spotlight YOPD, about her mission to change perceptions and awareness of the condition - and why the stigma has to go.

I went to my GP, who was just about to retire and had seen it all before. While he did raise the possibility of Parkinson’s, he said my reflexes were too good for it to be Parkinson’s

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When Michael J Fox was diagnosed with Parkinson’s Disease aged only 29, the world was shocked to see a high-profile celebrity struck down with such a cruel condition. At the time, few probably realised that Parkinson’s could affect someone so young. Again, when Muhammad Ali revealed he had the condition, diagnosed aged 42, there was widespread anguish at his plight at being diagnosed at such a young age. But the harsh reality is that, while these two cases attracted huge attention, this is happening to people around the world every day. Figures from Parkinson’s UK suggest a rising population with the condition currently standing at 145,000, with 1,757 people aged under 50 living with the disease. These are known as Young Onset Parkinson’s Disease (YOPD) cases. Although they officially represent 1.2 per cent of cases, misdiagnosis is common due to the persisting misbelief that people are simply ‘too young’ to have the condition. While symptoms are broadly the same as with Parkinson’s, around 30 per cent of people with Parkinson’s never present a tremor - viewed by many as a definitive sign. Gaynor Edwards was 42 when she was diagnosed. The charismatic owner of a PR and marketing firm in Tunbridge Wells went to her GP after two incidents which made her think she should seek medical attention but Parkinson’s was still not immediately seriously considered because of her age. “I had a frozen left shoulder, then things started to happen which I thought ‘that’s not right’. I drove an automatic car, so never had to worry about operating a gear stick, but on one occasion a friend parked my car for me and I couldn’t get the handbrake off,” she recalls. “Then I was in a work meeting with a local

councillor, which is something I’ve done many times and doesn’t faze me. All of a sudden my left hand started shaking like the clappers. I wasn’t nervous, certainly not to make me shake like that anyway, I just didn’t know what was going on. But of course in young onset, people don’t always display the tremor that is so associated with Parkinson’s, it is more commonly sparked by anxiety. “I went to my GP, who was just about to retire and had seen it all before. While he did raise the possibility of Parkinson’s, he said my reflexes were too good for it to be Parkinson’s. I then went to a neurologist, who also said my reflexes were too good for it to be Parkinson’s. The nurses who were there were saying ‘It won’t be Parkinson’s, you’re far too young’. But nine months later, following a DAT brain scan, I was given the diagnosis. Needless to say, the bottom fell out of my world.” Shocked by the lack of specific support given to young people with Parkinson’s, with no counselling or real support offered, just a “huge unfriendly folder of information targeted at older people”, Gaynor was further troubled by the response from some quarters when she announced her diagnosis via her company’s Christmas newsletter. “Some of my clients were great, but others dropped me like a stone. I presume they no longer thought I could do a great job for them. But the truth was I still had a living to make, I wasn’t about to drop dead - Parkinson’s doesn’t really impact on life expectancy - I wasn’t about to lose my mind, and of course I was still able back then to continue working. I was left questioning whether I should have told people or should have kept my diagnosis to myself. And that is not right,” she says. Channelling her marketing and publicity expertise and frustration at the situation towards bringing about change, Gaynor

INTERVIEW

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INTERVIEW

created Spotlight YOPD, a UK-based charity with a global reach specifically for people with YOPD, to offer them the support and information they need to have confidence in themselves and their futures and their ‘Parkie Power’. Since officially launching in January 2016, it has helped to support people of all ages, genders and professions. Among those working with Gaynor is 24-yearold Jordan Webb, who holds a Masters degree in psychology and is currently the youngest known case of YOPD in the UK. Another is Vicki Dillon, who took part in the recent GDNF trial and was featured in the BBC TV documentary on the pioneering brain treatment that aims to restore damaged neurons in Parkinson's cases. “One thing we all want people to understand is that we don’t have Parkinson’s, we have YOPD, and that’s very important. We don’t want to be seen as having this ‘elderly condition’ as we have to live with this for the next 30, 40, 50 years or more. The stigma needs to change, and not being seen to have an ‘old people’s disease’ will help with that. This is a hidden and sidelined community, there are no organisations really looking after us, so many feel abandoned,” says Gaynor. “People are seen by geriatricians who don’t always necessarily understand YOPD, so aren’t always able to give the best advice. Even within the medical profession, as I found myself, you find Parkinson’s is written off as a possibility as the person seems too young to have it. But they could have YOPD, as that affects people of any age - the youngest diagnosis we know of is a two-yearold in the States, while in the UK one of my YOPD friends was diagnosed at just eight. This is classed as juvenile onset so there is clearly no such thing as being too young. We need genetic testing on diagnosis to help us learn more about this.” Gaynor believes empowering people with information - which includes people with YOPD, clinicians, researchers and the public in general - can help to bring about change. “I think when you are diagnosed with Parkinson’s, or more accurately with YOPD, you are so floored by it that it’s easy to just be accepting of your lot. But we want to help people to have the confidence to ask for more,

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to say 'this isn’t good enough', to do their own research and find out where the best people and support are available, even if that means they have to travel beyond their local area. "We need to say to people that no-one is going to care and understand about you and your situation more than you yourself, so get out there and find what is best for you. Check everything, if it doesn’t feel right to you then it may well not be,” she advises. “But I think the way YOPD is viewed and the awareness there is among people in general is pitiful. I think people will presume that the same level of support is offered to us as it is to people with cancer or other conditions, but it’s sadly lacking. Counselling on diagnosis should be automatic, for both those diagnosed and their family. Depression is a symptom as well as a reaction to the diagnosis. Parkinson’s is caused by a lack of dopamine - one of the brain’s happy chemicals. On that basis, depression should not be too much of a surprising symptom. Suicide attempts are common in people with YOPD; mental health is a big challenge here. When you hear those words ‘You have Parkinson’s’ you cannot imagine the effect that has on people. There is no counselling being offered to help you cope. I went to my own counsellor, but I think it should be routine that there is someone there to help you process and better understand the reality of what you have to live with. “There is no consistent diet advice, no financial advice, just an instruction to inform the DVLA, who will reward you with a three-year driving licence, and lots about palliative care - needless to say, that’s not what someone diagnosed with YOPD wants to read. Imagine you’re 26, you’ve got kids, you’ve got a mortgage to pay - you need to get your head around what has happened and you need help with that. I think many people expect we get support as standard, but we don’t, we don’t even get free prescriptions.” Gaynor also passionately believes YOPD should be given its own NICE guidelines. “In 2017, they put out some information which addressed pregnancy and Parkinson’s, which must have been directed at people with YOPD barring some medical miracle.

"But while they acknowledge juvenile onset, YOPD appears to be sidelined, despite being recognised as a rare disease in its own right.” As part of her mission to secure these badlyneeded changes, Gaynor is a vocal advocate, also working with fellow charity The Cure Parkinson’s Trust. She has attended major events including the fifth World Parkinson’s Congress - held every three years - in Kyoto in June, as well as the European Neuro Convention at the NEC in Birmingham, along with Jordan and Vicki. “Events are often a great way of meeting and engaging with people, and I think the World Parkinson’s Congress is fantastic. There are clinicians and neurologists there, alongside patients. It’s very rare in a neuro convention that patients are so central. "Not everyone likes this analogy but we are the talking lab rats - why would researchers not want to hear our perspective? The humility and humour of the patients involved is just incredible, and that is helping to bring about change in itself,” she says. “At the NEC, as with many events there is a lot of white and corporate blue, but we rocked up with YOPD in big gold letters, theatre-style, against a red satin curtain backdrop. "Vicky and I were dressed in our 1950s dresses with big underskirts and YOPD slogan T-shirts. We want people to notice us and acknowledge us, come and talk to us and learn about YOPD and the realities of it. We sat on the floor, including Jordan who is 6’2”. People would come over to chat to us but wouldn’t want to sit down, the most common excuse being because of their knees - but when we said we all had Parkinson’s, they joined us. “We are committed to changing things for the benefit of people everywhere. We live with it and know the many changes that need to be made, but the main thing that we want people to take from Spotlight is that they’re not alone.” Spotlight YOPD launched its 'DON’T PANIC' card at the recent NEC event. Healthcare professionals are invited to get in touch to request this resource, which can be used to offer support to their YOPD patients. See spotlightYOPD.org for details.

THERAPY

Enter stage left: :

A rising force in therapy The phenomenon of dramatherapy - using acting and other expressive arts to communicate feelings - is quickly gaining popularity nationally. Deborah Johnson speaks to dramatherapist Kathy Akers about the foundations of its success, including with neuro-rehab patients. “Do I have to be a tree?” It’s a question Kathy Akers has come to expect when the subject of dramatherapy is raised - but she’s quick to clarify that the answer is ‘no’; well, not necessarily, anyway. “Dramatherapy can take many forms. We use all kinds of means of communication and creative processes to engage and allow people with a brain injury to express themselves. And if people want to be a tree, then that’s fine, but there is a very wide variety of other ways in which we work,” she explains. The increasingly popular concept of drama

Pamela Raith photography

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THERAPY

as a therapy, and an important healing practice, is now spreading nationally, and its results are helping to redefine impressions of what drama therapy actually entails. Far from participants being cast as a tree, dramatherapy can include role play, puppetry, music, image-making, movement or even making films. As the British Association of Dramatherapists explains, the practice “has as its main focus the intentional use of healing aspects of drama and theatre as the therapeutic process. It is a method of working and playing that uses action methods to facilitate creativity, imagination, learning, insight and growth.” And statistics show that the use of such therapy can play an important role in brain injury rehabilitation through building interpersonal connections and relationships, helping to rediscover memories and rebuilding confidence and communication skills. It has also been hailed as helping to build greater connection between right and left hemisphere brain function through connecting the instinctive, emotional right brain reactions with logical, language-based left brain function. One report, which assessed the impact of dramatherapy on patients recovering from traumatic brain injuries in a neuro-rehab unit, found that it helped psychological adjustment to severe disabilities resulting from neurotrauma, and highlighted four areas in which it empowered participants - it provided them with a sense of personal space; allowed escapism and enjoyment; awakened creativity and a sense of potency; and provided a metaphor to explore personal injuries. It recommended its further use and development in neuro-rehab. Kathy, a dramatherapist since 2010, specialises in trauma-informed dramatherapy, with a focus on using therapeutic drama to aid neurobiological development. Since introducing the concept to the charity Headway Nottingham through an eight-week pilot project in 2017, the initiative has delivered impressive results for its service users, as well as very favourable feedback. “It was like we were seeing the sparks of ideas

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There is something really empowering about healthy protest and creating a place for that to happen

in our minds and thinking in a totally new way,” said one. The concept is now gaining momentum nationwide, with Kathy pointing to the creativity and flexibility dramatherapy allows as being a key factor in its success. “I think one of the big things is how it engages everyone - I have people in my groups who are in the very early stages of recovery alongside others who have lived with a brain injury for 15 years. It accommodates the needs and abilities of everyone, too. We recognise that people one day may be very mobile, but for the next session their movement may be more inhibited, and that’s fine. We work within the boundaries of what people can do,” says Kathy. “Although statistics say this, we see for ourselves the very positive outlet drama can be for people. We have people with a lot of anger, they’re very frustrated they can’t express themselves as they wish, and it’s hard for them to work in a linear fashion. But through using creativity, we can accommodate this. "It’s not necessary to have access to lots of language to express yourself and that is where our use of objects, images, songs, whatever it might be, can really help.” While the content of the sessions themselves is flexible, there is a structure to provide participants with some degree of routine. The group determines the themes and the dramatherapist will suggest drama-based activities and structures to help them explore this from a number of perspectives. The dramatherapist will help to link the sessions together with reminders so participants can build an ongoing picture and the group can look back on how far they have come and the progress they have made. Among the many emotions that are expressed via dramatherapy, anger is a very common theme, and the practice is proving to be an appropriate outlet for people to channel that. Kathy points to the use of creative protest. “In my groups, the use of creative protest is very popular. "There is something really empowering about healthy protest and creating a place for that

THERAPY

to happen. "For people with brain injuries it’s common for them to feel powerless and that they have little choice, and things they used to do for themselves they now rely on others for. I think that is why the creative protests have such power, in that through using creative arts they can get their point across. “We recently did a piece of work with a song by Ian Dury and the Blockheads, and then in the group we wrote our own protest songs. When we collectively discussed topics, it was clear that disability discrimination was a stand-out theme. Group members were clear about ways in which they needed to be heard and responded to differently as a result of their acquired brain injuries, be that in the workplace, in personal relationships and in day-to-day interactions and daily routines. "The ability to use music and song to rail against something was very powerful.” Indeed, music is frequently found to be one of the most popular and engaging outlets - and, in Kathy’s experience, has even led to the creation of a song. “Music is a key feature in creative work. People can share songs that have an importance for them and share their reasons and associated memories with the group. Discussions about this topic and its associations can throw up some really interesting material which leads to valuable discussions around identification in terms of culture, race, sexuality, gender and class. With developing skills of discussion, managing difference and active empathetic listening, people can manage these discussions and challenge assumptions. “In one of my recent groups, we discussed ways in which the political climate affects our lives, funding, assumptions, perspectives in the media. From these discussions, the group created a story that became a song called Trevor Nobrain, the tale of two friends whose lives took very different turns. "As a result, we were able to focus on the important themes that came from this songwriting, and the group gained real confidence and skill in this area. It’s also a great reminder of how putting the world to rights can be enormous fun.”

How George harnessed the power of self-expression George* was a regular attendee at Headway Nottingham. A man in his late fifties, of dual heritage, he had limited mobility due to a brain injury he had sustained early in his life and that had an incremental impact on him, leading to his needing to use a wheelchair most of the time. He was known for his sense of humour, loud voice and his unflinchingly honest communication which, at times, led to rifts and conflict between himself and others using the centre. George lived alone and suffered with symptoms indicative of depression, linked strongly to his sense of isolation, and he would frequently become confused about the involvement of various services and health professionals in his life. George joined the dramatherapy group from the first introductory session and attended every session offered throughout the year. In the early weeks, he worked hard to find points of criticism for each session, and claimed to be attending in order to “make up the numbers”. In initial sessions, George would work in an isolated way, reluctant to engage with whole group activities and bringing in ideas that were disconnected from those of the others in the group. At first, other group members found this frustrating and it led to some honest and difficult conversations in the early goal-setting days about how communication between group members could be best enabled. Through the means of dramatherapy, George worked comfortably in a creative medium - he was able to construct stories, take on roles and share with confidence, and had an incredible patience with others in the group who were less verbally able than he was. Speaking about music and its impact on his life enabled George to speak clearly and honestly about mistaken assumptions that had been made about him regarding his heritage and the music that he enjoyed. He played a key role in writing and performing a protest song constructed by the whole group. This deepened his connections with the group and enabled him to bring a more vulnerable side of himself forward, as every member of the group was enabled to share their various challenges that came from prejudice and inequality in the world outside. On the closing session, George dictated a letter to the group that read: “It has been brilliant. Once I was reluctant to attend this course, slumped over, not wanting to say a thing, but now I am willing to go head to toe with anyone to express myself and share with everyone. "I don’t want to be the man in the corner with a small smile on his face. I want to partake in life, be a positive character, and seek love.” *name changed for anonymity.

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Join NR Times online forâ&#x20AC;Ś. Daily updates from the world of neuro-rehab Commentary and analysis from a panel of experts Interviews and insight covering tech, therapy, clinical practice and more

On nrtimes.co.uk this month:

How young patients are experiencing the power of music therapy An introduction to SPECs, the psychological training package for professionals working with children and young people The role of serious injury lawyers in rehabilitation The pioneering tech transforming spinal cord injury outcomes Golden opportunity â&#x20AC;&#x201C; the Olympic-standard facilities available to neuro-rehab patients An essential update on welfare decision-making for vulnerable people

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TECHNOLOGY

21st Century technology: A care provider's guide The team at the Elysium NeuroCare facility at Badby Park, Daventry, share how they are exploring the use of technology for the benefit of patients. Robot pets We have robot pet dogs and cats, and even a monkey and a horse. They respond to touch/ voice commands, carry out movements and vocalise. They are primarily used to promote engagement by the patient, encourage pleasant feelings which helps set them in a good mood to participate in therapy, promote positive bonds with staff, and as a source of distraction should the patient start engaging in disruptive behaviours. For selected patients who have favourite smells, we can spray specific odours on the pets, so that all of the sensory modalities are engaged for a pleasant experience. Voice-activated intelligent agents We’re using Google Assistant with a patient who had quadriplegia following a gunshot injury. It enables him to control his television and lights, retrieve his schedule for the day, play his favourite music and sports clips, and make both voice and video calls to family and friends. Measures of wellbeing, behaviour and mood are monitored to see if they change as a result of this intervention. Exergames We’ve built up an exergame resource using the Nintendo Wii. This includes both hardware and a range of software games. In collaboration with colleagues in physiotherapy and speech and language therapy, and after carefully documenting the past habits and leisure activities of a patient, games are selected to help promote engagement in these therapies, and generally give the patient a sense of both enjoyment and achievement. Neuro-rehab apps We’re using neuro-rehab apps to help with the needs of specific patients. Thus, we are using a scanning app, Visual Attention produced by Tactus Therapy, to help improve scanning in

patients who show visual neglect following a condition such as stroke. Intelligent clock displays We are trialling clock displays which, in addition to day, date & time, have reminder features to help patients remember items such as scheduled activities, and via wifi can also be linked remotely to family and friends so that messages or pictures can be sent directly to the patient. We are also trialling a clock display which gives audio output of display information to touch, so as to benefit the visually impaired who may not be able to read the clock display. Virtual reality apps We have a Google Cardboard-based virtual reality app, WayBack, which features a video from the coronation in 1952, and which enables the patient to immerse themselves in scenes from the video. We will be introducing other VR apps, including geography-based ones. As with the aforementioned robot pets intervention, their primary purpose is to encourage pleasant feelings which help to set the patient in a good

mood, as a form of reminiscence therapy, and as a source of distraction should the patient start engaging in disruptive behaviours. Odours, music, images and light for relaxation classes Relaxation classes have generally been unimodal, with either verbal instructions or music. We are trying to use multiple modalities, ideally in synchrony, to enhance feelings of wellbeing in relaxation classes. Using the latest technologies, we configure the setting where relaxation classes take place, so that selected room lighting can be generated, relaxing music or sounds are played, a pleasant odour is released and relaxing images such as sunset on a beach are displayed. Regular feedback from patients, families and staff is obtained during implementation of all the interventions mentioned. And, as far as possible, practical outcome measures are included to evaluate the effectiveness of the interventions. The 21st Century has given us new technologies which can potentially broaden the independence and wellbeing horizons of neurological patients. As healthcare professionals, we need to respond to the challenges associated with their implementation, and this requires both commitment and creativity. This article was co-written by Elysium’s Narinder Kapur, Callum Watson, Heena Parmar and Amy Watts.

A robo pet in action at Elysium NeuroCare

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RESIDENCE REIMAGINED

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RESIDENCE REIMAGINED A SPONSORED FEATURE

Residence reimagined The interior trends and technologies shaping the future of at-home care settings.

For people with brain and spinal injuries and conditions, home should be a haven of independence and rehabilitation. Itâ&#x20AC;&#x2122;s vital, therefore, that their homes are designed and equipped in such a way as to maximise security, dignity and independence. Obviously security must always be the first consideration, but, after that, independence is the key, for without independence, dignity is undermined, mental wellbeing is compromised and rehabilitation is so much harder. Fortunately, the ever-accelerating pace of technological change is rapidly increasing the possibilities for independence and, with it, the quality of life for those with complex care needs. Some of these developments are with us now, others are just around the corner and many more are likely to be available within a few years. Take, for example, the Internet of Things â&#x20AC;&#x201C; interconnection via the internet of computing devices embedded in everyday objects, enabling them to send and receive data. This is likely to be a huge enabler of advances in the design and fit out of residential environments for people with complex needs and disabilities. It has been estimated that there were 10 billion Internet of Things devices in 2018 and that will rise to 64 billion devices by 2025*. But, there are also great strides being made in more traditional technologies and the uses to which they can be put. In this feature we will take a look at some of the most exciting developments across the spectrum.

*Source: Business Insider, IoT Analytics, Gartner, Intel

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RESIDENCE REIMAGINED

Safe as houses People who have suffered a severe injury can be vulnerable and often their sense of confidence has been seriously undermined. Independence is important to them, but so is being able to feel safe in their homes. US firm Nest Labs is now making available in Europe its Nest Cam IQ outdoor security camera. Nest Cam IQ outdoor is a camera that not only can watch your garden or outdoor area, but it’s smart enough to differentiate between a person and your neighbour’s cat, and can alert you accordingly. When it detects a person, it can send a person alert to your phone and will automatically zoom in on and follow the person in the frame so you can get better information about what they’re doing. With a Nest Aware subscription, you can also receive personalised alerts that let you know if it’s a friend or family member, or someone it doesn’t recognise. Nest Cam captures up to 2.6 million highdefinition frames a day, which is a lot to scan through but it can be programmed to narrow down to the most relevant frames, so the story of each day can be reviewed quickly. It also pulls out key moments automatically and zooms in on the action and can send an alert with a snapshot. A three-hour snapshot history is accessible in the Nest app. Nest Cam IQ outdoor is available for £329.

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Safety monitoring without the intrusion How a game-changing box of tricks is keeping vulnerable people safe without impinging on their privacy or independence. There’s a dilemma for people who need residential care and for their families and loved ones. On one hand it is important for their morale, dignity and rehabilitation that they should enjoy as great a degree of independence as possible. Yet, those who are living with brain or spinal conditions are, by definition, vulnerable. For their own safety and for the peace of mind of their families and carers, they require monitoring to a greater or lesser extent. Monitoring, however, is something which undermines, or even negates, independence. Fortunately, modern technology is allowing the development of systems which enable remote monitoring, allowing a person to live on their own but which alerts a carer, relative or any other nominated body when anything arises that might indicate a problem. One such system is VEMS, developed by husband and wife team Martin and Antonia Bradford. Initially their target market was the elderly, but it soon became apparent that VEMS was a valuable tool in the care of all vulnerable people. Antonia, who has a master’s degree in computer science and Martin, an electronics engineer, developed VEMS over two years ago through a combination of their

professional experience, a hobby and family circumstance. Antonia explains: “The whole thing started when we built a little monitor for our boat to check that the electricity was working and there were no leaks and so on. The thing was working beautifully then suddenly my mother-in-law had a fall, then I said to my husband, 'what we need is a boat monitor but for your mother'. "So we started developing it and within a few weeks we had a very early prototype in her house.’’ Last year Martin’s mother had a stroke, but, fortunately, VEMS alerted them that something was wrong. “We don't know whether our early response saved her life or not, but the point is that

RESIDENCE REIMAGINED

we knew straight away that there was something amiss even though we were not close by,’’ says Antonia. “We managed to get someone to get help to her and she recovered very well.’’ VEMS monitors movement, temperature and humidity; data which is captured by a monitor and relayed to a cloud-based server where an engine builds a statistical model of the customer's behaviour. Antonia says: “The system generates readings and if it thinks that a number is significantly different to what it is expecting,

it starts to raise concerns. It builds the level of concern and when it gets to a certain point it sends a notification to the mobiles of the nominated people.’’ A carer can log into the system at any time to check on the wellbeing of any of their customers. “You put the sensor unit in the room, you connect it to the home WIFI and then you forget about it. You just live normally. It’s very simple to use, with all the complexity up in the cloud. "We wanted to make sure that it was

accessible to people of all abilities and most importantly for all pockets.” Currently they are looking for 30 volunteers to trial VEMS. Antonia says: “The participants will have the service free of charge for three months and if they decide to stay with the service they can keep the sensor with our compliments, but if they're not happy, they return the sensor and we will cancel the subscription. It would cost them nothing.’’ For more information, visit www.vixenelectronics.co.uk

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RESIDENCE REIMAGINEDG-

On another level NR Times reports on an innovative solution to an age-old domestic problem facing many people in wheelchairs.

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There can be no true independence in the home without mobility; and that includes mobility between floors and levels. Chairlifts / stairlifts are a common solution for people with mobility problems at home. But what about the many people in wheelchairs who cannot transfer on or off a conventional chairlift? Enter Southampton-based Level Access Lifts, an expert in solving such problems. Nick Dade, sales director at the firm, which supplies lifts throughout the UK, explains: “Everything we supply is designed to aid those people who are unable to transfer from a wheelchair and are designed to move you in your wheelchair between floors or split levels. For example, if you have suffered a stroke and, once a week you need to go to rehab, when the hospital transport comes, they are going to be able to get you in and out of the house without the need to transfer. The risk of injury is reduced and it is much more dignified. Many of our lifts are designed to accommodate an attendant or carer as well, so, they are designed with ergonomics in mind.’’ The company’s philosophy is to tailor a solution to a client’s individual needs.

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“We are a solutions-driven company,’’ says Dade. “We want to know about the person behind the issue. In my case, 10 years ago my father had a brain haemorrhage and he went from being a fit man to being severely disabled. I have been in the lift business for 30 years, but the last 10 years have taught me an awful lot about the person behind the lift and what’s needed and what’s important. “We fully understand that every person and every building is different and therefore we have an extensive product portfolio and the knowledge to cover a multitude of different circumstances. Our approach is: 'what is the situation you are trying to overcome?' We can either assess it from photographs or visit the property. We then offer the best solution, or maybe two or three solutions that have their pros and cons. Given that we are independent and don’t manufacture our own lifts, we’re not biased towards any particular one.’’ He adds: “There are so many different scenarios and we aim to fit lifts where they’ll cover a multitude of situations, for example, if someone gets heavier or bigger, or if a second person in the family needed to use it for a

different reason. The whole idea is to try to make that one purchase the right purchase from the beginning and to allow the customer to make an informed decision.’’ Level Access Lifts sources its products from around the world, looking for innovative design and quality of build. One, from Denmark called the Flexstep, is a lift and a staircase in one product and can morph between the two functions at the press of a button. All of its lifts are simple and intuitive to operate – usually as simple as an up and down button. After installation, the company takes care of the regular maintenance. Dade says: “It’s a seamless customer experience. From the moment somebody rings us, through to going out to survey, through to fitting the lift and thereafter maintaining it, they get a smooth, troublefree experience. We have grown our business since 2002 predominantly on referrals. We’re very well known for giving good advice and providing a good quality product.’’ For more information visit www.levellifts.co.uk or call Level Access Lifts on 0856 4662 999.

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RESIDENCE REIMAGINED

A touch of ingenuity Technology developments on the horizon look certain to revolutionise the way we live. This is bound to have positive implications for those with complex disabilities, as even the most mundane features of a home can be transformed into an enabler of a more independent and fulfilling life. Take, for example, Bosch’s recent announcement of a virtual touchscreen on every surface for smart homes and the Internet of Things. At CES in Las Vegas, the world’s largest tech event, Bosch Sensortec announced the BML100PI, an interactive projection module that enriches smart homes with a virtual touchscreen, with the potential to turn

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ordinary shelves into personal assistants. A generated laser beam creates a focusfree image on any surface and then scans it line-by-line to detect any gestures or finger movements. Bosch Sensortec says its Interactive Projection Module provides a touchscreen with a highly intuitive user experience for any smart home appliances as a fully flexible alternative compared to a static, physical screen. Home device manufacturers can use the BML100PI to create 'smart shelves', for example in fridges, cupboards, kitchen cabinets or wardrobes. One module can provide touchscreen functionality on up to six different surfaces. For example, a single module can project a weather forecast, the user’s individual daily schedule as well as reminders of upcoming events on to a wardrobe. This information is processed and appropriate clothing is recommended to match the weather forecast and/or planned

personal activities. If an item of clothing is missing or in the laundry bin, the smart shelf can suggest new clothing for the user to order in an online fashion store or it can schedule a date for the laundry service, directly synced with the user’s calendar. "With this Interactive Projection Module any regular shelf can easily be transformed into a personal assistant for the user, greatly enhancing the level of convenience in people’s daily lives," said Dr. Stefan Finkbeiner, CEO of Bosch Sensortec.

RESIDENCE REIMAGINED

How innovative care home equipment can make all the difference By Joe Hulbert, Innova Care Concepts

With the average life expectancy in the UK on the rise, more and more care homes are taking shape all over the country. These facilities cater to people of all abilities and the equipment they choose to include can make all the difference in delivering consistently high-quality care. One key obstacle in any nursing home is creating a homely, cosy facility is patient lifting hoists. These are necessary if you are needing to carry out transfers to and from different locations, but they can often feel quite cold and clinical – precisely the opposite of what you would want your care home to feel like. For care homes that require some hoist coverage, the Integralift hidden hoist is proving very popular. This is an overhead hoist that is concealed away in a bedhead unit or bespoke cabinet. With the hoist hidden away, it will help to keep the room feeling comfortable and reduce any distress that may be caused by the sight of specialist equipment. It simply folds out above the user’s bed and can help to facilitate transfers to and from chairs and other pieces of equipment. What’s more, you can choose the colour or wood finish of the cabinet so that it is in keeping with the décor of your care home. Interior design is really helping to shape care homes so that they can not only look great but also provide the best care possible. So even just choosing the right colour schemes and keeping your curtains, cushions, and

fabrics in the same palette can really make all the difference and help residents (and even their families) feel more comfortable in your facility. Another aspect of this is choosing the right furniture and equipment that will suit your residents and your staff. Whether it is a subtle care bed, hidden hoist, or even made-to-measure wardrobes, every detail should be thought of to ensure that your care home is standing head and shoulders above the others. www.innovacareconcepts.com

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RESIDENCE REIMAGINED

Lightbulb moment Lighting specialist Philips has come up with Philips Hue, a range of lights, sensors and switches to help make the home smarter. By replacing existing light bulbs with smart bulbs or by exploring a range of many formfactor lamps and fixtures, Philips Hue offers control over a variety of lighting options so that, for example, all lights can be turned off and on with one click. Or, of particular interest to people with certain disabilities, such as those related to brain injury, lights can be controlled through voice command. And itâ&#x20AC;&#x2122;s not only a question of turning lights on and off: the lighting can be personalised and the ambiance altered by choosing from all shades of white and no fewer than 16 million other colours. With the right light, itâ&#x20AC;&#x2122;s easy change the atmosphere of any room. The user can find the colour combination that matches their mood or aids performance of a task. Brain injury sufferers may be prone to extreme moods such as anger, aggression, or distress, where ambience, including light, can have an important calming effect. Such systems can also help with safety and independence. Philips Hue motion sensors can trigger lights to turn on automatically and sensors can also activate light strips hidden along walls, allowing somebody to move safely through their home at night. The Philips Hue app can customise the brightness, timing or even the motion sensitivity of the lights. Philips Hue also works with other smart home devices, such as security cameras.

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e t a m i t l u e Th e t a m i t n i in s s e n i l n a e cl

“The Closomat is the most wonderful thing of all the living aids we have added to our home, it’s beautiful! I now don’t have to get my wife to help me.”

Karl van Gool, Halesowen

Quality • Service • Heritage www.clos-o-mat.com Tel: 0800 374 076 Email: info@clos-o-mat.com 45 NRTIMES

TECHNOLOGY

A stroke of genius An Austrian start-up is using mobile devices and the brainâ&#x20AC;&#x2122;s inability to separate the real from the imagined to help stroke patients. NR Times meets Rewellio CEO and founder Georg Teufl to find out more.

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Austrian innovators believe they may have cracked one of the great global challenges of post-stroke rehab. One-to-one therapy can be hugely effective in enabling patients to regain lost functions. Yet personnel and resource shortages often mean the individualâ&#x20AC;&#x2122;s time in this setting is limited. Technology company Rewellio has developed a potential solution, combining EMG biofeedback and an app to help patients recover lost hand movement after stroke.

TECHNOLOGY

Its aim is to enable more therapy time and promote a faster, motivating and independent recovery process. Founder and CEO Georg Teufl says: “Our initial idea was to work out how we could enable a stroke patient more therapy time. Hand rehabilitation is particularly tricky, especially in the early stages when quite often the muscle contractions are so weak that no visible movements can be seen. Therefore, the patient at home has no real feedback as to whether or not the exercises

are being done correctly.” Rewellio’s app is used with a compatible EMGbiofeedback device which can detect any minimal muscle activity in the affected limb. Often these movements are too weak to move the hand, but provide a platform on which the patient can build. The data is transmitted to the app and incorporated into the rehab session, giving patients instant feedback during their exercises. This allows for a fully functional, virtual hand that shows users the real-time activity of their targeted muscles. Teufl says: “The aim of this concept is to ‘trick’ the brain so that it relearns which signals produce the right outcome in movement. The repetition of these exercises helps the patient get back some functional use of the hand, which becomes the basis for other exercises, such as training for more precise movements of the hand and fingers.” The system is designed to both assist therapists in clinical and rehabilitation settings, and to give the patient extra independent therapy time at home. It supports dozens of exercises for arm and hand rehab – encouraged through a series of interactive games. These are played via the app on a tablet or a virtual reality headset, with EMG biofeedback bracelets providing the real-time data. As well as boosting exercise hours after stroke, Rewellio’s approach to rehab is also driven by the power of motor imagery; the mental practice of movement without physical movement. Motor imagery, and also observation of actions, are shown in various studies to improve motor performance and upper limb function after a stroke. They are also commonly used to improve performance in elite-level sport. Imagining and observing activates certain motor-related regions, such as the premotor cortex and inferior parietal lobule – the same areas in the brain used in the actual movement (Mizuguchi et al, 2017). Both motor imagery and action observation are connected to the mirror neuron system, defined as the network for understanding actions performed by others. These neurons

discharge either when the individual is performing a motor task or watching someone else perform a related action. Action observation and motor imagery use this mechanism for the recovery of motor impairment. A number of studies describe the findings and knowledge of the mirror neuron system as a source of information to motor training after stroke (Garrison et al, 2010). Research also shows that there is no difference in a healthy person’s functional magnetic resonance imaging (fMRI) when watching real or virtual hands. These findings bring virtual reality (VR) to the next level as a promising tool for neuro-rehab (Brihmat et al, 2018). Teufl says: “Immersive VR in combination with hand tracking capabilities allows for very efficient therapy methods.” This, he says, can be used to build on the traditional mirror therapy concept – in which a mirror is placed in the person's midsagittal plane, thus reflecting movements of the nonparetic side as if it were the affected side. “The sensors in the VR headset make it possible to capture the patient’s improvement precisely helping the therapist to recommend the best possible therapy modules at any given stage.” Teufl founded Rewellio in 2017, bringing together his experiences as a stroke therapist and his “passion” for software development. The company is headquartered in Austria, with a US office in Los Angeles and plans underway to establish a presence in Australia. It recently raised €800,000 in angel investment, part of which will fund clinical trials into the technology. “There are so many research questions we have opened up with this technology. We want to work with as many research institutions as possible to increase the amount of evidence for what we are doing. We’re currently preparing for the trial and [enlisting] pilot customers. “We’re keen to connect with pilot customers who want to try out the technology and get an understanding of how they can benefit from it.” Professionals and patients interested in trialling the technology are encouraged to visit www.rewellio.com or email info@ rewellio.com.

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INSIGHT

Goals study sheds light on the priorities of young brain injury survivors Two specialist rehab providers have joined forces to investigate goals among young people affected by acquired brain injury. Here they report on their findings.

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INSIGHT

What did they find in both studies? 1. Rehab goals were wide-ranging In both services. The overarching, and perhaps unsurprising, similarity between the findings of both studies is the level of variability between the goals of individual children. Goals from both services spanned across many chapters of the ICF, demonstrating the need for services that are skilled in, and able to adapt to, the many different needs of children and young people who have had an ABI. This highlights their complex, interdisciplinary needs and demonstrates the challenge for services to be able to measure individual outcomes for a wide variety of needs, as well as to demonstrate the impact of the service. 2. In both services, the majority of the goals were set within the activity and participation (AP) domain. This helps us to understand that at every stage of their rehabilitation being able to take part in activities that they want or need to do, and participate in their daily lives and wider society, is of the upmost importance.

The goals that children, young people and their families set in rehabilitation following an acquired brain injury (ABI) enable professionals to understand their priorities at different stages of recovery. The Childrenâ&#x20AC;&#x2122;s Trust (TCT) and Cambridge Centre for Paediatric Neuropsychological Rehabilitation (CCPNR), have recently published studies that explore the goals set in their different settings. By reviewing these goals and their different rehabilitation contexts, the services are learning about the individual and evolving needs of children and young people with ABI. What were the studies? The two studies exploring the childrenâ&#x20AC;&#x2122;s rehabilitation goals have been carried out in very different services. The first (Kelly et al., 2018) analysed 860 goals set at TCT in their residential, multi-disciplinary rehabilitation service for children and young people with severe ABI. These were goals from young people and their parents who were usually in the sub-acute stage of their ABI (i.e. they had been discharged from hospital recently). The second (McCarron et al., 2019) analysed 326 goals set by children and young people at the the CCPNR, a community-based, multi-disciplinary neuropsychological rehabilitation service for children with mild to severe ABI. The service aims to meet the needs of children and young people living in the community who have complex acquired needs that cannot be met by non-specialist services. These children tend to be in the post-acute stage of their ABI (so they no longer need acute medical care). In order to explore the priorities for children and families, both studies mapped the goals to the International Classification of Functioning and Disability (ICF) (WHO, 2017) and the related Child and Youth Version (ICF-CY) (WHO, 2007). The goals set in these different contexts (residential rehab vs community rehab) and different stages of recovery (sub-acute vs post-acute) help to provide important insights for those working with CYP with ABI.

This suggests a shift towards goals of increasing social complexity

What were the differences? Although the most common domain for goals in both studies was AP, the chapters where the most goals were set varied. In the residential rehabilitation setting, mobility and self care-based goals were most frequently prioritised. In the community neuropsychological rehabilitation service, major life areas and interpersonal interactions and relationships were the most prevalent AP areas. This suggests a shift towards goals of increasing social complexity. This difference could be related to the remit and acceptance criteria of the services. However, it could also demonstrate an emerging focus of priority for the children who have had an acquired brain injury as their social and rehabilitation context changes. In the residential rehabilitation setting, the skills that are developed in early childhood, i.e. walking, talking and using the toilet, are often the key focus of young people and their families. As they return

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INSIGHT

home, and access daily life at home, school and in the community, these early priorities may either have been resolved, or the childâ&#x20AC;&#x2122;s focus shifts to the increasingly complex social consequences of their ABI, such as their ability to manage in school or make friends. Furthermore, the impact of cognitive, emotional and behavioural challenges, can often be hidden in the structure provided by a sub-acute rehabilitation setting. These difficulties can become more apparent with the increasing independence needed for participation at home, at school and in the community. In line with this idea, there was also a growing emphasis on environmental factor (EF) goals in the community setting (20 per cent of all goals, as opposed to nine per cent of goals in the residential setting). The majority of those accessing residential rehabilitation services will have come

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The impact of cognitive, emotional and behavioural challenges, can often be hidden in the structure provided by a subacute rehabilitation setting

straight from an acute hospital, so may not be aware of the environmental barriers they will face. Furthermore, within the residential rehabilitation setting, children and their families may still be hopeful that they will make a full recovery and not need any changes within their environment. Like the AP goals, the differences in the types of EF goals in the two settings reflects an increasingly social focus of young people in the community. In the residential setting, 'products and technology' was the most common type of EF goal, but 'support and relationships' was most important (and the second most important area overall) for children in the community. Environmental factors impact on the ability of a young person to achieve their goals around activities and participation, so in the realworld community setting, it is unsurprising they become an increasingly important area

INSIGHT

for rehabilitation work. Interestingly, there was a far lower percentage of goals set in the body structure and function (BS/BF) domains in the residential rehabilitation service (nine per cent), when compared to the community setting (28 per cent). In the community setting, goals in this category were predominantly related to mental functions (and most commonly emotional functions), whilst there was greater variety of the goals in the residential setting with increased emphasis on physical functions. This is likely due to the nature of the services. However, it may be reflective of CYP’s psychological adjustment to their post-ABI identity (Gracey et al., 2015; Wales et al., 2019) and the need for incorporating psychological work into rehabilitation. What does all this mean? 1. It is clear that children and young people who have an ABI require an individualised service that is tailored to their specific needs and goals with a strong focus on activities and participation 2. In order to provide intervention for these wide-ranging goals, services need to be resourced to provide an integrated interdisciplinary approach 3. Goals need to be reviewed regularly as it is likely that they will change as young people acquire skills and come to understand the impact that their ABI will have on their identity, future and everyday life 4. The increased focus on environmental goals in the community directs clinicians, services, schools and other organisations to be able to make environments accessible for young people with ABI in the community. Should young people be exposed to a greater extent to some of the challenges in environmental and social participation earlier in their rehabilitation? Would this help them better prepare for their transition from residential to community settings, and result in better medium and long-term outcomes for children and their families? Or is the complex and changing nature of the needs of children with ABI best met by specialist residential and community teams maintaining different expertise

It is clear that children and young people who have had an ABI require an individualised service that is tailored to their specific needs and goals with a strong focus on activities and participation

DATE FOR YOUR DIARY Dr Suzanna Watson will be joining an esteemed line-up of speakers at this year’s national paediatric brain injury conference delivered by The Children’s Trust in partnership with Irwin Mitchell. Taking a visionary look at what the future holds, ‘Building the future of childhood brain injury: where do we go from here?’ takes place on Friday 6 September 2019 at The Royal Society of Medicine, London. Book via www.thechildrenstrust. org.uk/conference.

while maintaining a strong dialogue at key transition points to support their evolving goals? These questions cannot be answered without research into these areas. ABI is a lifelong condition, requiring long term studies on the evolving impact upon children and their families as they develop throughout childhood, adolescence and adulthood. What we can take from these two studies now is the importance of letting children and young people define what is important to them in rehabilitation. This commentary was co-written by Gemma Kelly (physiotherapist), Lorna Wales (occupational therapist), Robyn McCarron (psychiatrist) and Suzanna Watson (psychologist), clinicians from The Children’s Trust and the Cambridge Centre for Paediatric Neuropsychological Rehabilitation.

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Breaking barriers in mobility tech A special report on how holidays and travel are being revolutionised for people with complex disabilities and their loved ones.

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BREAKING BARRIERS

Hitting the road to a better quality of life Advances in technology are helping to open up the world like never before for people who rely on mobility assistance, as NR Times discovers.

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The use of Bluetooth, LED lights and phone charging points are no longer the sole domain of the executive car - these are the types of technology being installed into state-of-the-art mobility aids, to help people who rely on them to explore the world. Major breakthroughs in accessibility in recent years have seen power wheelchairs, manual wheelchairs, power assists and seating and positioning products developed to help empower users, giving them freedom to travel and discover new places and experiences. In addition to mobility and wellbeing, lifestyle is now a key feature in the development of new products going to the market, with modern technology helping to redefine the traditional view of wheelchairs. One leading manufacturer in this field is Permobil, a company which has been at the forefront of redefining the sector, with the introduction of its Active Height and Active Reach innovations to help the user achieve new goals. â&#x20AC;&#x153;We are constantly striving to find ways to contribute to our userâ&#x20AC;&#x2122;s quality of life. As well as our power wheelchair products, we want to communicate the possibilities that

BREAKING BARRIERS

the combination of manual wheelchairs with power assist devices offer to users, extending their mobility, increasing function and opening up possibilities for excursions and travel,” says Gordon Cunningham, who leads Permobil’s UK operation. Permobil, which began life in Sweden over 50 years ago and has grown into a global leader in its field, is certainly using technology to maximum effect. The clinical need for good seating and positioning, alongside the necessity to create maximum comfort, has seen the development of practical functions like its Active Height - a seat elevator to allow users to achieve better vantage points - and Active Reach, which tilts the seat forward and raises it, helping to extend reach. Both have been hailed as breakthroughs in independence. The F5 Corpus VS offers the possibility to stand and even to drive at slow speed while standing, and its SmartDrive power assist for manual wheelchairs enables users to go up hills and ramps through actions controlled by a Bluetooth wristband. The discreet unit is compact and lightweight and clips onto the back of the wheelchair. Whenever energy levels are low or a challenging obstacle is reached, users simply tap their device and the SmartDrive takes over. It has a range of around 20km and weighs just under 6 kgs. Another useful addition is the company’s Connect Me system - currently on trial in some EU countries and coming to the UK soon. The wheelchair is equipped with a GPS device with a SIM card module connected to an app. It enables users to contact a service hub for possible faults to be diagnosed remotely. Good seating and positioning is an important aspect of the Permobil philosophy, not only from a clinical point of view, but also to provide maximum comfort by being highly adjustable to individual needs. As the body moves and changes over the course of a day, month or year, the cushion adapts to ensure a user is always optimally seated.

We are constantly striving to find ways to contribute to our user’s quality of life

A nice feature from a travel perspective is that you can transfer your ROHO cushion to an airplane, train or bus seat, helping you to maintain your comfort and leaving you to enjoy the journey. “It’s vital that our products are adaptable for the user – not the other way around. User centric design that focuses on first and foremost functionality, comfort, quality of life. If you are comfortable and mobile, then you can get a lot more done during the day,” says Cunningham. Add to that the likes of the LED lights, puncture free tyres, on-chair phone charging ports and holders for phones and tablets, which are increasingly becoming standard features, and the appeal of manual and power assisted wheelchairs has never been greater. For more information on Permobil products, visit www.permobil.com or contact info@permobil.co.uk.

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Covering neuro-rehab from every angle

N R Times aim s to inform and in spire professionals from all disciplines involved in the care of peop le with brain and sp inal in j uries and conditions.

It enables advertisers and sponsors to directly reach: • Clinicians and leaders at brain and spinal injury centres across the country in the public and private sectors • An extensive network of stroke professionals • NHS decisions makers at CCGs throughout the UK • Charity networks supporting people with neurological conditions and severe injury • Patient-carer households • Decision-makers at legal and other professional services firms

To request a media pack and to find out more about becoming par t of NR Times email jane@aspectpublishing.co.uk. www.nr times.co.uk @editorNRTimes 56

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BREAKING BARRIERS

Clever engineering from TriLift is broadening the horizons of people with mobility scooters and powerchairs.

Over 350,000 people in the UK rely on mobility scooters and powerchairs every day. These devices should be a fast-track to freedom, independence and the vital journeys of daily life. Yet this is not always the case, with several challenges hindering their usage. Firstly, as scooters/powerchairs operate on rechargeable batteries, travelling distance is limited. Users going further afield may have to disassemble the device, load it into the back of their vehicle, drive to the destination and then unload it. Some scooters and powerchairs can’t be disassembled, meanwhile. In this case, a vehicle able to accommodate their height and a ramp or hoist to access the vehicle are needed. Usually, the back seats are folded down and all boot space is taken up. The weight of scooters and powerchairs is also problematic. Getting the device in and out of vehicles often requires two people and a significant amount of physical effort. Enter TriLift – which gives scooter and powerchair users the freedom to easily transport their own device wherever they go. The scooter/powerchair is simply driven to the rear of the vehicle and coupled to a bracket which is permanently fixed to the device. At the flick of a switch, the device is then raised off the ground and locked securely in place on the rear of the vehicle. TriLift’s small size and low weight make it compatible with most vehicles currently

available in the UK, without affecting the safe or legal operation of the vehicle. It can also be transferred should the user change their vehicle; and can be used with any size of scooter or powerchair. If TriLift will not be used for a prolonged period, it can also be easily removed from the vehicle for storage. “This is a revolution for the mobility transport industry and is so simple to use,” says Ray Lartey, managing director of TriLift UK, who has been in the mobility industry for more than 20 years. He first saw TriLift in the US several years ago and was instantly inspired to bring it to the UK. TriLift UK is the Sole Distributor of this worldwide patent product in the UK and Europe. It has Mobility outlets and technicians located across the country. Interested parties can also book a free no obligation demonstration at home. For more information visit www.trilift.co.uk or call 0800 246 5901.

At the flick of a switch, the device is then raised off the ground and locked securely in place on the rear of the vehicle

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Making waves

Ahead of the game

The Hippocampe all-terrain beach wheelchair is a revelation in accessibility. It is light, easy to assemble and packs into a stylish carry case for easy transportation. It is suitable for any age from two onwards and available in the UK from Delichon Ltd. The corrosion resistant frame and neoprene seat are maintenance free - simply rinse with fresh water. From forest trails, kayaking trips to racing along the beach and paddling in the sea, the Hippocampe offers the freedom to explore.

Advancing technology is improving the level of control users have over their mobility vehicles. Among the slickest devices on the market is the Gyro Glory, a headset from which users can control their chair and computer through head, cheek or eye movement. The lightweight headset is worn, with the click sensor positioned approximately 1 to 2 cm from the corner of the user’s eye, cheek or any other part of the face which they can move. The sensor works by detecting the light reflected from the surface of the user’s skin or eye, thus the sensor can detect when their eye is open/closed/partially closed or movements in the face where it is positioned. The headset also features a built-in tremor filter to allow for involuntary movements and has a 20-hour battery life. Once set-up, the user can manage all the controls on their powerchair as well as the mouse on their PC or laptop. It connects with the user’s chair through Bluetooth, although a cable can also be used if there is interference – such as at music events or exhibitions. In the UK, it is available from Precision Rehab and compatible with its full range of powered wheelchairs. “Some of our clients have extremely complex needs and a product such as this will provide them with an increased level of independence, even those with the most restricted level of movement”, says the firm’s director Matthew James.

www.delichon.uk

See www.precisionrehab.co.uk for details.

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Sky high ambitions A young entrepreneur from Bristol is aiming to revolutionise air travel for disabled people, including those affected by brain and spinal injuries and conditions. Andrew Mernin reports.

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Josh Wintersgill was enjoying a drink by a Tenerife pool when the entrepreneurial spark hit him. He been pondering how to make travelling easier for people with disabilities; a quandary close to his heart. Josh, now 25, has spinal muscular atrophy (SMA) type three â&#x20AC;&#x201C; a progressive muscle wastage condition affecting every muscle in the body. His physical capabilities have reduced with age and, since age nine, he has required a wheelchair on a daily basis. Yet Josh loves travelling and so has experienced the often-undignified, stressful and uncomfortable process of being transferred on and off aircraft. In the Canary Island sunshine he imagined a device that would bring an end to the barriers of air travel for many people with reduced physical mobility.

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Less than two years later his innovation, easyTravelseat, is now attracting attention of major airports and even has the backing of one of Europe’s most prominent entrepreneurs. Josh says: “As a kid, my nan used to take me to Tenerife most summers and growing up, I’d also been to places like Turkey, Florida, Lapland and Sweden. So I was pretty well travelled, but as I got older, my condition deteriorated and more and more issues arose when flying abroad. “One of the problems I experienced was just how undignified, uncomfortable and unsafe it was to be lifted under your arms and legs onto an airplane. As well as the prospect of being manhandled, there is also the issue of airports and airlines not having specialist equipment in place to assist in the process. “With my invention, the airport doesn’t need any specialist equipment, as the passenger brings it with them in their wheelchair. Also, assistance is not needed to move equipment from one end of the airport to the other.” The easyTravelseat is placed in the wheelchair on the day of travel. The user can then sit in it until they reach their destination, using their preferred method of transfer on and off the plane. This can either be via a hoist, or with two to four manual lifters. Travellers do not need to be lifted to put transferring equipment under them as it is already in place. The product also comes with a double-layered pressure relief cushion to alleviate pressure from the lower back and buttocks area when sitting for sustained periods. Crucially, easyTravelseat circumnavigates the widespread lack of specialist infrastructure in airports. Only 15 of the 34 main commercial airports in the UK have transferring equipment in place. In Spain, meanwhile, it is only present in two of 23 commercial airports. “If you travel around Europe, you will notice the severe lack of airports equipped with the appropriate transferring equipment too and find yourself being lifted under the arms and legs,” Josh says. Relying on special assistance and airport equipment not only limits destination options, but creates extra problems. As well

as possible language barriers, there is the potential for discomfort and even injury caused by being manually lifted and jostled into transferring equipment. It also adds extra time constraints. Additional processes must be carried out on top of sorting luggage and getting the wheelchair into the hold. Josh also believes many carriers do not have formal equipment in place to transfer disabled passengers off the aircraft in an emergency. “The airline industry has been ignoring this for years,” he says. His device features manual handles and extension straps that can be used in emergency situations. The brand name of his creation offers a major clue to its influential backer. Sir Stelios Haji-Ioannou, founder of easyJet, has invested through his easyGroup company into Josh’s business, Able Move. Their paths first crossed when Josh entered the Stelios Awards for Disabled Entrepreneurs in the UK 2018, administered by the Stelios Philanthropic Foundation in partnership with Leonard Cheshire Disability. Not only did Josh win the £30,000 first prize to develop his idea, but he attracted the attention of the serial entrepreneur and founding father of budget airline travel. Perhaps he recognised similarities between his own journey to make air travel accessible to more people; and Josh’s mission to do just that for disabled travellers. Josh says: “After winning the award, Sir Stelios invited us to his headquarters in London. He liked the idea and so we had various meetings over two weeks about brand licensing and an investment deal. We are now part of his ‘easy’ family of brands. We are not part of easyJet but we share the same branding and easyGroup Ltd owns a percentage of my company through his investment. “It’s fantastic to have him onboard but so far we've been in an area where I haven't really needed to ask him anything significant. I'm just getting on with what needs to be done and there's no point in going and asking him silly questions. If I'm going to ask a guy like Sir Stelios a question it's going to be a big one!”

After months of research and development, building a solution to suit as many people as possible and adhering to various airline measurements and requirements, easyTravelseat is now commercially available. From a neuro-rehab perspective, Josh urges carers, loved ones and other professionals such as case managers to consider the benefits of making air travel smoother, safer and less stressful for the severely injured. “If the individual has an acute condition that is relatively new and they are still working with occupational therapists and social workers, for example, I would advise the case manager to contact us and we can work with them to make sure it’s the right solution for their needs. A lot of our customers have been disabled for a long time and know what works and doesn’t work for them, so it can be a bit of a juggling act. “Within the healthcare sector, there are so many variations of slings and seats and it’s nigh on impossible to suit everybody without having 100 different sizes and designs. I’m not saying this will work for everyone but we have created something that suits the vast majority.” As well as transforming air travel for his customers, Josh is also considering ways of tweaking the product to match other types of travel. “My dream holiday is a safari and I’d love to make that happen with the easyTravelseat.”

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Standing up for independence With greater independence for users and an array of proven health benefits, it is little wonder the standing wheelchair is gaining in popularity at rapid pace. NR Times reports.

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The device, which allows people who traditionally may have used a seated chair to make face-to-face and eye-to-eye contact through them being able to stand, has played a central role in developing and regaining the confidence of many users. Going to the gym, using a cash machine, reaching the top shelf in a supermarket, and so many other activities which may have previously proved problematic, are now routinely possible. Additionally, its positive role in a multitude of health matters is also a key factor in its adoption - from improving blood circulation, heart

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and lung function, bowel movement and bone density to reducing muscle spasm, joint stiffness, shrinkage of tendons and development of pressure sores. The standing wheelchair is helping to bring new possibilities to those who rely on such devices to get around. For those unable to stand unaided, the standing wheelchair is a true breakthrough, with various versions available depending on the person’s condition and requirements. Wheelchair 88, one of only three companies in the world making standing wheelchairs with the FDA standard, has brought four models to market. The Malaysian-based business, founded by C.Y. Cheung six years ago, after his father’s third stroke left him wanting to create innovative solutions for people with mobility problems, is now retailing in Europe and the UK. Its four models are the Leo II, Draco, Pegasus II and Phoenix II. The Leo II is the lightest standing wheelchair in the world at only 27kg, with foldable backrest and detachable wheels, and is used by people who have two strong arms and hands and fingers. For people who only have fingers that are workable, the Pegasus II model is most suitable with its power assisted standing or sitting position activated by just one finger. The Phoenix II is a highly accessible, fully powered wheelchair, which allows recline of up to 25 degrees, with adjustable armrest height, headrest, seat depth, leg length and footrest angle. The Draco model builds on this even further with its lie-down function, and is particularly popular with users with diabetes or swollen legs and feet, as well as those who need frequent naps during the day. Cheung sees the standing wheelchair as a major development for people who have previously been confined to a seated position. “In daily life standing up talking to people face-to-face and eye-to-eye can be important. The standing wheelchair means not sitting down all day. They help to release stress. Meanwhile, for someone with bedsores, standing wheelchairs are ideal in aiding recovery by enabling users to stand as frequently as possible, for as long as possible. Also if you go shopping you can reach the high shelves yourself,” he says.

“Because users feel more comfortable, emotionally they feel better. Sitting down all day makes you feel very unhappy, when you can walk around, relax a bit, go out into the garden, it makes you feel better. So they feel happier. In exhibitions we see users, some of whom haven't been standing for more than 10 years, the first time they stand up. It feels so high to them; maybe they feel it's too high and they are afraid. But once they stand up for a while, they feel so good, as I can see from their faces.” With the exoskeleton being seen as the only real comparison to the standing wheelchair, its newer rival is proving more accessible on both a price and durability front. “Exoskeleton technology is still unstable. The user must still have two strong arms in order to move on their own legs. It's very costly, and there is still a chance of accidents,” says Cheung. “Sometimes if you don't handle well, you can fall. Your body has to lean forward, that’s not a good posture. These are only for users with a very strong upper body. Using a standing wheelchair, you have a knee strap, thigh strap, waist strap, chest strap, shoulder strap - so all kinds of straps. It depends on the user's capability, we can use as little straps as we want, but most of all they are comfortable.” All four wheelchair models covered can be adjusted in terms of seat depth, leg length and foot plate angle (for stretching the tendons while standing). For more information on Wheelchair 88’s range of standing wheelchairs, visit www.wheelchair88.com

Once they are able to stand up for a while, they feel so good

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TECHNOLOGY

Braced for a better quality of life

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TECHNOLOGY

It’s 100 years since Otto Bock created an orthopaedic tech firm in Berlin to help soldiers wounded in World War One. Just as it did then, his company continues to pioneer new ways of improving mobility, as NR Times reports.

Ottobock is big news in Germany. When the company celebrated its centenary earlier this year, German Chancellor Angela Merkel addressed 350 distinguished guests from politics, industry and academia at its Lower Saxony HQ. On the world stage too, it is a dominant force, with a team of over 7,300 and an array of mobility-boosting products available across the globe. The company exhibited at this year’s European Neuro Convention in Birmingham; and NR Times took the opportunity to explore its newest offerings. Among them is latest version of C-Brace, billed as ‘the world’s only stance and swing phase controlled orthosis’. For users affected by partial or total paralysis of the knee extensors, this means being able to walk more naturally. In neuro-rehab terms, this might be required for example, after stroke, brain injury or polio. In the past, paralysis orthoses were limited to locking and unlocking the knee joint, leading to abrupt movements – for example when sitting down. The C-Brace, however, is able to respond rapidly and intelligently to the user’s immediate situation, including to tripping situations. An integrated microprocessor controls the stance and swing phase of the leg, and therefore the entire gait cycle. The result is that users no longer need to pay attention to every step and can navigate stairs, uneven ground and slopes more naturally. The new generation of C-Brace comes with a few useful additions. The sensor technology has been stepped up to make it more dynamic and sensitive than previous versions.

A clever introduction is the Cockpit smartphone app that enables users to adjust their joint and switch into different modes such as ‘cycling’. It is also supported by the Setup app, designed for the orthotist’s use. An additional advancement is that it is smaller, so can be worn under clothing; it is also lighter, meaning less effort is needed to walk. Jana Middlebrook, Orthotic Academy clinician at Ottobock UK, says: “Everything we do is aimed at improving the patient’s life and reducing the impact their disability has on them. With other braces on the market, it can be easy to accidently unlock the knee, particularly on stairs or slopes. The C-Brace will lockout to prevent the patient from falling. This computer controlled brace enables the user to walk step over step and to have a controlled sit. Often if people have weakness in their quad muscles, they end up throwing themselves down when they sit. This prevents that.” Also relatively new to Ottobock’s product portfolio, meanwhile, is the Bioness L300 Go. Created by Californian-based Bioness, this is a functional electrical stimulation (FES) system designed for patients with foot drop, for example in MS or after a stroke. FES involves the application of small electrical charges to a muscle that has become paralysed or weakened, due to brain or spinal cord damage. The electrical charge stimulates the muscle to make its usual movement. With foot drop, disruptions in the nerve pathways between the legs and the brain prevent the foot from being lifted to the correct angle when walking. FES can help to change this.

Ottobock has been the exclusive distributor of the new FES generation and a strategic partner of Bioness since September 2017. This latest product was introduced to the UK last year. As well as electric stimulation, it provides support for instability of the knee and can be used for both children and adults. It is available as an independent lower leg system (L300 Go), a combined lower leg and thigh system (L300 Go and L300 Go Plus Upgrade) and as an independent thigh system that uses a foot sensor (L300 Go Plus Stand Alone). Features include 3D motion detection, multichannel stimulation, Bluetooth programming and a user app for mobile devices. Middlebrook says: “Importantly, it doesn’t have wires so the patient can just pop it on and off and it doesn’t require the fishing of electrodes, which is quite a complicated technique required to make sure the correct nerves are stimulated. "The technology works on gyroscopes on three planes so, rather than just being able to walk in a straight line, users can walk diagonally and backwards, and it will still work to lift the foot clear of the ground. With the upgraded version, you can also control the knee. "If there is a much higher level of weakness, you can stimulate the quads or the hamstring muscles to control knee hyperextension or knee flexion.” L300 Go is supported by a ‘learning algorithm’ that adapts to changes in gait dynamics and deploys stimulation within 0.01 seconds. The device controls dorsiflexion (movement of the foot upwards) and inversion/eversion (tilting the sole of the foot inward and outward) with a single electrode pad – plus acceleration sensors which monitor movement patterns on three planes. Other features include an optional foot sensor and remote control and an app that allows users to monitor their own therapy progress. For more information on this and other Ottobock products visit: www.ottobock.co.uk

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TECHNOLOGY

A Russian revolution in neuro tech

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TECHNOLOGY

Russian neurotechnology developers visited the UK recently to forge new ties with neuro-rehab professionals. Andrew Mernin reports on their innovations and intentions. “People on the ground don’t care about the political situation between the UK and Russia,” says Alesya Chichinkina, PR director of Russian tech firm NeuroChat. “Everyone has these barriers in their heads but they are not the reality. The politics is just for the politicians.” We’re chatting midway through her enthusiastic demonstration of NeuroChat’s impressive communication system. Certainly here at the the NEC in Birmingham, there is no hint of the frosty British/Russian relationship. NeuroChat is one of several Russian parties showing off their wares at a large exhibition stand at the European Neuro Convention. The Russian delegation is eager to work with neuro-rehab professionals, patients and care providers in the UK. NeuroChat enables users to type messages with their mind without any movement or

speech. Target users include those with MS, motor neurone disease and brain and spinal injuries. The headset looks like a sleek cross between a GoPro action camera and a call centre operator’s headset. It comes neatly presented in branded packaging straight from style book of Apple. Its backstory, as told by Alesya, is perhaps a microcosm of Russia’s growing prowess in neurotechnology for people with disabilities. Investment, sophisticated science and a growing awareness of the power of rehabilitation are conspiring to put Russia at the forefront of the development of new technologies for people with brain and spinal conditions. “Russia was always famous for our mathematics and software developers. We have a lot of good software engineers and we also started to build really good hardware.

“NeuroChat started in 2016 as a project for people with severe speech and movement disabilities, perhaps after stroke or neural trauma. We received about £1.8m in investment, about 40 per cent from the government and the rest privately. Our scientific supervisor is the world-famous Alexander Kaplan, head of the laboratory of neural interfaces at Moscow State University. So the science was perfect in the project from the very beginning. “The common problem with this type of product, however, is that scientists generally struggle to make products for the market. They have no commercial thinking. “So the bigger challenge with NeuroChat was not how we are able to type with the power of thought; instead it was about building the product as a communicator for people with disabilities.” The technology converts brainwaves into on-screen and electronically verbalised text. A special gel is applied to the user’s head, before the headset is put on. A five to 10-minute “calibration process” follows, in which the user is urged to concentrate on certain letters or words highlighted on screen. The system, which runs for eight hours on one charge, gauges the brain’s reaction to

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TECHNOLOGY

each letter or word rather than tracking eye movements, as is increasingly common in rehab technology. Alesya says: “A really important aspect is the integration with social networks and messengers. People who may have returned home from hospital after a stroke, for example, of course need to be able to communicate with their family and tell them what they want. But they must also reconnect with society. A big part of the rehabilitation process is socialising, which is why we’re putting users online.” Users can converse on messenger platforms, via SMS or on social networks; although

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Facebook is not yet available as it prohibits certain types of digital integration. Other additions have been shaped by the findings of patient surveys. “We found that users really wanted a journal function, which would enable them to make notes and keep a diary. This was super easy to do but the people working in the laboratories had no idea this is what people with disabilities wanted until they asked them.” A news feed which keeps users updated on the latest happenings of the day was also added. The next stage is to continue developing the system’s integration with other devices and apps, including smart home appliances.

“NeuroChat won’t just be a communication device, it will also be a remote controller.” English is one of several compatible languages, with NeuroChat now looking to establish a foothold in the UK and other markets. “We are interested in distribution and selling partners in the UK. In Russia we work with private clients and hospitals to teach them how to use the system and we can’t do this for UK users from Moscow so we need people here to work with us.” Currently the system is used by around 150 patients in Russian rehab centres and 100 home-based users. Efforts to raise funds for a large-scale study into the rehabilitative effect of the technology are now underway. NeuroChat’s progress has been aided by its involvement in the Neuronet Industry Union. This is a non-commercial partnership uniting developers, manufacturers and researchers across Russia covering neuroscience and neurotechnology. Key areas of interest include AI, augmented reality, robotics and virtual reality, with involved partners spanning science labs, corporations and clinical settings. It encourages collaboration across various defined market segments such as ‘neuroassistance’, ‘neuroeducation’. ‘neuromarketing’ and ‘neuroentertainment’. The overarching aim is to drive the development of neuronet technology itself – which it defines as the ‘next generation of information exchange’. The Russian government is on board too. A ‘neuronet roadmap’ has been approved by the Presidium of the Presidential Council for Economic Modernisation and Innovative Development of Russia. It sets out growth plans for the neuronet market, with Russian firms leading the way. Activities supported by Neuronet include the development of new products and services, advanced training of specialists in using neuronet technology and providing new education, health and social innovations. Dmitriy Orlov, Neuronet’s partnership relationship manager, is here at the NEC and keen to spread the word about the impending neuronet revolution. “This is the big market of the future and we need to get many technologies, scientific

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researchers and businesses involved. This is just the beginning. “Our members want to export to other countries and think internationally because this will affect societies the world over – and the UK is a really important market.” Another member of Neuronet represented in Birmingham is Neurobotics, which makes equipment for “scientific research in neuroscience, physiology and behaviour”. It has a range of robotic products and also develops anthropomorphic robots – including frighteningly realistic versions of Alan Turing and the Russian poet A.S. Pushkin. At the NEC, the Moscow-based company is showing delegates products covering various fields including TMS (transcranial magnetic stimulation), FES (functional electronic stimulation) and a system used to teach patients about motor imagery. The headline technology, however, is its home-based stroke rehab invention. The Neurobotics Neurotrainer (pictured

on p66) brings together robotics, electromyography (EMG) signalling and motor imagery. Users place their hand in a robotic glove, while a screen shows a virtual rendering of their hand. The patient’s brain activity in mimicking movements, such as a five-fingered grab, triggers the glove to mechanically support the movement. CEO Vladimir Konishev says: “Here in the UK, as in Russia, it is very costly for society to offer stroke survivors months of rehabilitation. If a patient trains for one hour a day for a month, for example, they may improve and regain some motor functions. A therapist might only be able to conduct around eight of these [one-to-one] sessions per day, however. Meanwhile, stroke survival rates are increasing, meaning more people need rehabilitation. “It’s very hard to provide rehabilitation at home. We are trying to provide a new direction in home-based stroke rehabilitation, using robotics to replace

human therapists. “You don’t need to stay in hospital to take a pill, so our question is why do you need to do rehabilitation in hospital? You can do it at home, where it’s more comfortable and less costly to society.” While neuro-technology can be prohibitively expensive for patients, Neurobotics is hoping to spread access to its device via a rental model. “When the patient is in hospital we can train them about motor imagery and when they go home, they can rent this for around 100 Euros per day,” says Vladimir. The Neurotrainer is not currently available commercially – but work is underway to gain the appropriate certifications and it is expected to launch soon. “We’ll have this as a commercial product next year when we return to this exhibition. We need to build a network of partners in the UK. I would like to see the opinion of endusers and practitioners and to [introduce it] to rehabilitation hospitals and businesses”.

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THE N ATIONA L B R A I N INJ URY C RISIS Politicians gathered in May for a Westminster debate on brain injury. Deborah Johnson reports on the highlights

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Chris Bryant (Rhondda, Lab) and chair of the debate opened the session by outlining the obvious and more hidden forms of brain injury. “Sometimes a brain injury is really obvious – where the skull has been fractured or penetrated—but often the sheer force of the soft tissue colliding at speed against the hard inside of the skull bruises the brain, leading to a contusion or a haemorrhage that is outwardly invisible. “Injuries can also be caused by stroke, tumours, infection, carbon monoxide exposure and hypoxia—oxygen starvation. These are hidden injuries with complex and fluctuating life-changing effects that strike close to the heart of what it is to be human, to be conscious, to be alive and, in many cases, to want to be alive.” Barry Sheerman (Huddersfield, Lab/Co-op) raised the issue of the long-term exposure to carbon monoxide and the effect that can have on the brain. Chris Bryant said it was a critical issue which involves an element of social justice. “Children from poorer backgrounds are four times as likely to have a significant brain injury before the age of five as those from wealthier backgrounds. We do not fully understand why as yet, and we need to do more work on that. “However, it is also true that elderly people, who maybe cannot afford to have their boiler checked as often as others or may have landlords who do not check their boilers as often as necessary, may be suffering low levels of carbon monoxide poisoning over such a long period that they are not even aware that they are being poisoned. The memory loss, the fatigue and the problems they are having

may be associated with their boiler rather than with anything else. We need to look further at legislation in that area.” Rushanara Ali (Bethnal Green and Bow, Lab) reiterated the need for wider specialisms in hospitals and for transition support to provide much-needed rehabilitation. Chris Bryant agreed, citing his own experience of cancer as giving him insight into the needs of patients. “If there is one thing that I have learnt from my experience of melanoma this year, it is that I, as the patient, wanted to go to the real expert, and I would travel as far as I needed to do that. Sometimes in politics it is easy to join the bandwagon when people say, 'no, everything’s got to be intensely local,' but the decision on major trauma centres was a brave one taken by this Government. "The Conservatives are not a party that I support, but it was the right decision for saving people’s lives. We can now save people’s quality of life as well.” Luke Graham (Ochil and South Perthshire, Con) highlighted the need for trauma centres to be based throughout the UK, alongside outreach for subsequent rehabilitation, especially in rural areas. Chris Bryant stressed the need for changes to the welfare system, using the example of Jordan Bell, who had a motorcycle accident six years ago, aged 17, which have left him with significant impairments. Jordan’s father described dealing with the welfare system as “the most demoralising and depressing experience for us all.” “I cannot emphasise enough the stress this process puts on people with ABI. One woman

Children from poorer backgrounds are four times as likely to have a significant brain injury before the age of five as those from wealthier backgrounds

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told me, 'I know I should use all my energy to try and get my brain back together. But I end up spending all my energy on forms — filling in forms and fighting bureaucracy'. "An unresponsive, intransigent welfare system is effectively preventing people from healing. “I beg ministers to take this issue seriously and to make sure that all PIP advisers are trained in the fluctuating and unseeable nature of brain injury. After all, one common feature is that patients become over-keen to please people. Often, they will tell the assessor everything they think the assessor wants to hear, because that is part of the condition.” He also raised the issues of ABI in prisons and sport. In Leeds Prison, 47 per cent of inmates, both male and female, have an ABI with over 60 per cent in Exeter Prison having atraumatic brain injury. “In both surveys, the majority of injuries occurred before the prisoner’s first offence, suggesting that the brain injury may be a key factor in why they offended in the first place. If we really want to tackle their reoffending, we will have to deal with their brain injury, too. “If we really want to tackle reoffending, we must do a better job of recognising and treating brain injury. "That means screening all new prisoners, training prison staff, providing proper neurorehabilitation for all prisoners with a brain injury and making special provision for women that recognises the likely different causes of their injury—particularly domestic violence.” With regard to sport, he continued: “I make it clear that sport is good for people’s health, and I do not want to prevent anyone from taking part in sport. I do not want all our sportspeople and

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If there is one thing that I have learnt from my experience of melanoma this year, it is that I, as the patient, wanted to go to the real expert

youngsters to be mollycoddled and wrapped in cotton wool, but the record on sports concussion is shockingly bad, particularly in football. “The last season has been especially bad. Mohamed Salah, Jan Vertonghen, David Ospina, Anthony Lopes and Fabian Schär have all been involved in high-profile, very dubious decisions by the on-pitch medics. “Let me be very clear to the football authorities. Football is failing its players. It is giving a terrible message to youngsters, parents and amateur coaches. Those authorities are putting players’ lives at risk. If they do not get their house in order, they will face massive class actions in the courts and we will have to legislate to protect players from what is, frankly, an industrial injury.” Sir John Hayes (South Holland and The Deepings, Con) spoke about the scale of ABI and the number of families affected. “The patterns that families endure are similar, one to another. Initially, of course, there is shock - a sense of disbelief—and the question that most people pose in these circumstances: “Why me?” Then there is a gradual realisation of the depth and scale of the effects of acquired brain injury, and an

unhappy initial concentration on what the person can no longer do, followed eventually by a reconcentration on what they can do. Most families follow that pattern when they suffer this kind of event, and that is why all that is done beyond the treatment of the initial trauma is so critically important. “Neurorehabilitation is vital because of the dynamic character of these conditions. Most people who acquire a brain injury will change. Many will recover fully and some will recover partly, but all that takes place over a long period and is particular to each case. There is an unpredictability about the effects of acquired brain injury; it can affect physical capacity of course, psychology and cerebral function, as well as personality. Families dealing with that must cope with those kinds of changes, which can be terribly frightening for the individuals concerned and those who love them. The point is that a difference can be made by the quality of care that they receive during that rather difficult journey.” Steve Baker (Wycombe, Con) said that babies can also acquire brain injuries from contracting meningitis, or during childbirth, and urged the Government to consider this issue. Dr Julian Lewis (New Forest East, Con) raised

the issue of personnel in the armed forces who have been misdiagnosed with post-traumatic stress disorder, when they actually have a mild traumatic brain injury. “I believe that only two scanners in the whole country are capable of identifying mild TBI. There is not yet an adequate programme to make sure that the condition is discovered before irreparable damage is done.” Sir John HayeS: “Often, misdiagnosis is part of that problem. Because of the characteristics of acquired brain injury that I described earlier— the changes in personality and the effect on cerebral function—misdiagnosis is all too easy. Part of our mission in bringing the all-party group’s report to the House’s attention, and doing so again in today’s debate, is to get all of Government, including the Ministry of Defence, working together to understand the breadth and scale of the problem.” Barry Sheerman shared his concerns at the apparent decrease in numbers of people wearing seatbelts, saying he is “obsessively concerned” about road deaths and injuries. He said cross-departmental working in Government is proving difficult. Sir John Hayes: “It is really important that local government is involved in this work, too.

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It is therefore not only a lateral challenge but about connecting the local approach to the national one.” Caroline Harris (Swansea East, Lab) said early diagnosis and better access to rehabilitation is needed, but it is essential the long-term complications of ABI and its associated problems are also tackled. She used the example of George, a 23-year-old who sustained a brain injury in an unprovoked attack outside a nightclub. “As a result of the severity of his injuries and the complexity of his ongoing disabilities, George was eventually awarded significant compensation, but this only led him to further problems. A friend introduced George to online gambling, something he had no previous interest in, but he now had the time and the money. George very quickly became addicted, making frequent and significant deposits with a wide variety of online gambling platforms. The result is that George has lost all his compensation, as well as money obtained by taking out additional loans and credit cards. At one point, he gambled and lost—this is breathtaking—£67,000 in just 40 minutes. He is now at least £15,000 in debt and, with no income, has no hope of meeting these liabilities. “George is not alone. Research has identified that brain injury survivors are 27 per cent more likely to develop problem gambling or addiction than the general population, and that risk is found particularly among people with frontal lobe damage. “Brain injury survivors such as George have already suffered so much, with their bright futures indefinitely stolen from them because of the trauma or illness they have experienced. They continue to suffer daily from the lasting effects of their injury as well as the associated anxiety and emotional difficulties. From an early stage in George’s addiction, the gambling platforms were made aware of his vulnerability, but despite this knowledge they continued to allow him to gamble on their sites, robbing him of his much-needed compensation, which was intended to give him a stress-free existence after his injury. Brain injury survivors are vulnerable, and at the moment the gambling industry appears to be exploiting that vulnerability.

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“It is not just about gambling. The consequences of brain injury affect so many people in so many ways, and we have to start looking more closely at this issue. We need better diagnosis, better care and rehabilitation support.” Bill Grant (Ayr, Carrick and Cumnock, Con) said after spending 31 years of his career in the fire service, he would welcome the introduction of compulsory helmet wearing for cyclists. “I am sure that that would reduce brain trauma injuries in the future. “Those people’s survival is to be welcomed, although regrettably some could have a degree of disability and might have a different persona, which can prove difficult for all to cope with. The individual and their families undoubtedly need an informed and readily available bespoke support package. The onus is on us to enable these individuals to regain their dignity, which they so richly deserve, and to have an active role in our society, which is

their society as well.” Liz Twist (Blaydon, Lab) reflected on the positive reaction to the landmark Time for Change report, but that work must now be done on its implementation. “It becomes clearer and clearer the more we look at it that acquired brain injury and its impact spread into so many different areas of everyday life, but I will focus on education and children. “Acquired brain injury should be included in the special educational needs and disability code of practice. All education professionals should have a minimum level of awareness and understanding about acquired brain injury and about the educational requirements of children and young people with this condition—for example, with the completion of a short online course for all school-based staff. “Additional training should be provided for the named lead professional who supports the individual with acquired brain injury and for

It is really important that local government is involved in this work, too. It is therefore not only a lateral challenge but about connecting the local approach to the national one

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special educational needs coordinators. We recommended that the acquired brain injury card for under-18s produced by the Child Brain Injury Trust should be promoted in all schools, hospitals and local education authorities. “Many children and young people with acquired brain injury require individually tailored, collaborative and integrated support for their return to school and throughout their education. As agreed, a return-to-school pathway is required—led and monitored by a named lead professional—to provide a consistent approach and support for the individual, their family and their teachers.” Jim Shannon (Strangford, DUP) stressed the importance of more support being given to people living with ABI and their families, based on his own experience of an accident which left his brother brain damaged. “Owing to the determination of my parents and family, who took the time to care for and look after him, we were able to give him some sort of an independent life, which is very important. He is happy and safe with his carers, friends and family. “Intensive care packages are essential to rehabilitation, and funding must be available for them. It is so important to give people who have acquired brain injury a normal life, if at all possible.” Siobhain McDonagh (Mitcham and Morden, Lab) praised the work of Headway, which is celebrating its 40th anniversary this year. “The reality is that, aside from Headway, most people—particularly those who cannot afford private healthcare—will receive insufficient support or rehabilitation after leaving hospital. Unless action is taken to enable people to access the vital support needed to ensure that these services survive, more and more people will be cut out of society and taxpayers will be left footing the bill for the longer-term care of those without the means to care for themselves. Considering that another four people will have been struck by brain injury during my speech, there simply is no time to delay.” Jamie Stone (Caithness, Sutherland and East Ross, Lib Dem) said he is a passionate campaigner on disability issues following his wife’s brain haemorrhage operation and subsequent recovery 20 years ago.

Acquired brain injury should be included in the special educational needs and disability code of practice

“At a time, whatever happens with Brexit, when we must play to all our strengths—we must play every card we hold—we have a lot of people who have been ill or are partially disabled who have great abilities that they could contribute to the functioning of the United Kingdom and to forging a new and better future for the United Kingdom. It remains a challenge for Governments of all colours to harness those people. If nothing else, it makes them feel that they are contributing to the country and it makes them feel useful and that they are important. Self-esteem and the esteem of your peers is incredibly important to happiness and to quality of life.” Martyn Day (Linlithgow and East Falkirk, SNP) highlighted that ABI is the biggest cause of disablement of people of working age in Scotland - around 40 per cent of working age disabled adults are in employment, compared with more than 80 per cent of those without a disability, and called for action on welfare benefits. “The disability employment gap compounds the problems for those with ABI when interacting with that complex service. I echo the report’s call for less frequent reassessments and for assessors to be trained to understand the problems faced by those with ABI.” Julie Cooper (Burnley, Lab) raised the issue of misdiagnosis of ABI.

“It is estimated that 24 per cent of children have some sort of brain injury, compared with 1 per cent who have autism. ABI in children is often misdiagnosed as autism or attention deficit hyperactivity disorder. The point about misdiagnosis across the board was made effectively. A particularly good example was the misunderstanding of cases involving servicepeople. The combined cost of brain injury, including health and social care costs, disability support, lost work contributions and premature death, is estimated to be £15bn a year, which equates to about 10 per cent of the NHS budget. This is an issue of such seriousness and magnitude that it cannot and should not ignored.” Seema Kennedy (Parliamentary UnderSecretary of State for Health and Social Care) addressed the topic of rehabilitation prescriptions (RP), drawing on the recommendations of the APPG report, which said all ABI patients should have one. “The National Clinical Audit of Specialist Rehabilitation for Adults Patients with Complex Needs Following Major Injury, published in 2016, found that on average 81 per cent of patients had a record of a rehabilitation prescription. The audit recommended that major trauma centres take action to improve compliance. The audit report appears to have had a significant impact.

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"The latest data, from the last quarter of 2018, from the trauma and audit research network shows that the national average rose to a 95 per cent completion rate for RPs. This is good news. “NHS England has worked with patients, clinicians and charities to improve the RP design and set new standards for communication and involvement of patients, families and carers. It is hoped that the new RP will support the development of a rehabilitation dashboard to monitor the performance of the system.” Sir John Hayes: “Sometimes a person may be deemed to have recovered completely and to have returned to normal—whatever normal is—but their manner, meter and mood might have changed and their sense of appropriateness might have altered, and that has effects in education and employment, in particular, as well as in personal relationships.” Seema Kennedy responded to many points within the debate, and reiterated calls for more to be done to reduce risk of ABI in sport. “The Department for Digital, Culture, Media and Sport [DDCMS] asked Baroness GreyThompson to carry out an independent review of the duty of care that sport owes to its participants; her report dedicated a chapter to safety, injury and medical issues. "National governing bodies are responsible for the regulation of their sport and for ensuring that appropriate measures are in place to protect participants from harm. “The DDCMS expects everyone in the sports sector to think carefully about the recommendations in Baroness GreyThompson’s report and in the all-party group’s report. Progress has been made over the years, for example through the Rugby Football Union’s Headcase campaign and action by other groups.” Concluding the debate, Chris Bryant said there are some issues still to be tackled, including armed forces personnel, cost recovery caps for insurance companies, school exclusions, and training and recruitment to get more people working in the area. He thanked members for their speeches. The question was put and agreed that members urge the Government to work through all its departments to ensure that those who have sustained brain injuries are guaranteed full neurorehabilitation as needed.

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Legal view by Louise Jenkins, partner and head of the serious injury team in Irwin Mitchell’s Sheffield office. The effects of ABI can be widespread and have a significant impact on all areas of life both for the individual concerned and the family unit. Early intervention from appropriate services and agencies is key to achieving the best possible long-term outcome. Where there is a potential personal injury claim, it is vital that lawyers work collaboratively with clinicians to provide a seamless, best interests focused approach, with the clinician retaining overall clinical responsibility, whilst ensuring the injured person is always at the centre of decision making and fully involved wherever possible. Signposting to support services early can make a real difference in relieving financial pressures on the injured person and their family. Support for the family unit is critical, particularly for those caring for the injured person and to give advice and support to children to help them to understand the impact of brain injury on all aspects of life and equip them to adjust and cope with any personality change. Assisting the injured person to achieve the best possible recovery, using the claims process where possible, should be the focus of any compensation claim, the process being a platform for helping an injured person to rebuild their life positively and engage in meaningful activity, beginning with accessing early rehabilitation through interim payment funds and expert advice on future treatment. The claims process is ultimately there to restore quality of life and provide long term protection for those with life changing injuries. Working collaboratively between the statutory and private sectors will ensure a smoother recovery pathway for injured people and allow them to maximise their potential. Collaboration is ever more important given the reduced resources in the NHS and in social care. Compensation claims have a valuable role to play in providing financial protection for life for those who have sustained serious injuries and in taking the pressure off statutory services to enable resources to be used for those who do not have a viable claim.

TECHNOLOGY

A whole new ball game for stroke rehab 78

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TECHNOLOGY

A device that was recently named ‘garden shed’ invention of the year is offering a new alternative to stroke survivors. NR Times meets the man behind Neuroball to find out more.

65 per cent of stroke survivors leave hospital with a disability, while around three quarters of stroke survivors will have arm or leg weakness

‘Necessity is the mother of invention,’ so the old proverb goes. For Guillem Singla Buxarrais, that necessity stemmed from his uncle; who was struggling to recover from a stroke suffered in 2010. The Spanish inventor-turned-entrepreneur says: “I wanted to find a solution to motivate him, that was at least affordable to buy and was also fun; that was my criteria and I couldn’t find anything at the time.” Guillem was looking for an antidote to his uncle’s upper limb problems; a device to fire up his morale and get him exercising towards recovery. After a fruitless search, he set about creating something himself. His background in biomedical engineering and as a sometime dabbler in neuro-technology aided his journey. So too did the input of the device’s eventual co-founder Dimitris Athanasiou, as well as a cast of fellow technologists. Stroke survivors, physiotherapists and patient-families also played their part, shaping the device’s inception and development. The result was NeuroBall, which allows users to complete upper limb rehabilitation exercise by playing games; intelligently adapting to the user’s ability and becoming increasingly challenging the more they use it. The device, which is used with a tablet computer, also enables rehab professionals and patients to monitor engagement and performance over time to track progress. “We know that if you had to do 400 repetitions on your hand you would get bored after a few,” says Guillem. “So we’ve developed a set of games that make it fun to do these repetitions. For example, in one game the user controls a scuba diver in the sea, moving them and collecting items by moving your wrist.” NeuroBall trains the key physio exercises including flexion and extension, pronation and supination, and grasp and release. Different games train a different combination of these movements. Sensors able to pick up the smallest movements enable the games to continually

adapt to the current level of movement. It is designed for a wide range of impairment levels – patients with highly limited movement can remove the device from its base and use their other hand to assist in the movement. Demand for products that can boost poststroke exercise time is certainly intensifying. Worldwide stroke-related illness, disability and early death is set to double from 2018 to 2035. At the last available count in 2016 there were reportedly 14 million incidences of first-time strokes. In the UK, as reflected globally, services are stretched. Only three out of 10 stroke survivors who need a six-month assessment receive one, according to research cited in the Stroke Association’s 2018 State of the Nation report. The same paper also reports that only around half of the stroke survivors in England, Wales, and Northern Ireland are discharged from hospital having been assessed for all appropriate therapies and with agreed goals for their rehabilitation. It estimates that 65 per cent of stroke survivors leave hospital with a disability, while around three quarters of stroke survivors will have arm or leg weakness. “Of course, we want patients to be able to train more in hospitals after their stroke and we do have survivors using NeuroBall on wards. But when they are discharged we also want them to be able to continue training at home. So this is the device that therapists can use with patients within [stroke care] centres and patients can also continue using the home.” Last year, NeuroBall won the Inventor Prize – a title dubbed as the best “garden shed invention” in Britain. It beat over 200 other entrants to the £50,000 award, which is backed by the innovation foundation Nesta and the Department of Business, Energy and Industrial Strategy. The company also recently received £650,000 in grant funding to support a clinical trial into the technology. Watch this space for the results, which are expected to be published soon.

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FEATURE

A Wonderful Stroke of Luck Having built a career as an occupational therapist in London and then Chicago, Janet R. Douglas’s life was turned upside down after suffering a massive stroke. It resulted in her spending the next decade overcoming physical and mental challenges to become a new version of herself. From her experiences the book, A Wonderful Stroke of Luck: From Occupational Therapist to Patient and Beyond, was born, detailing the huge impact of a stroke from Janet’s unique dual perspective as both therapist and patient. In her memoirs, she examines the effects of brain damage on personal identity and relationships, and how the noticeable disabilities a stroke causes are only part of the struggle. The idea of writing such a raw account was a personal challenge for Janet. She remembers: “When the idea of writing a book was first raised, I could neither read nor write normally. It took almost a decade of therapy to be strong enough physically and mentally to take on the challenge.” Here, NR Times shares an excerpt from her work. This passage features Janet and a small cast of healthcare workers…

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FEATURE

ne topic that occupied a great deal of my mental capacity was food, in particular, scrambled eggs. I don’t like eggs. This is an aversion born of surfeit. Growing up as I did, during a time of food rationing in the aftermath of the Second World War, our diet had to be supplemented by anything that could be produced at home. We had chickens, kept in a coop made of wood, corrugated iron and of course, chicken wire, at the top of our garden. Every spring, twelve day-old chicks, yellow and fluffy and no bigger than a sparrow, traveled by train and truck to our house defying all odds, to enter a cycle of eating, laying and being eaten. These chickens produced enough eggs to feed not only our family of six but several neighbouring families as well. As a consequence of our good fortune, we had eggs just about every day. We had soft boiled eggs with toast soldiers, fried eggs, egg sandwiches, hard boiled eggs, poached eggs, pickled eggs, coddled eggs, scrambled eggs, omelettes, and for dessert, egg custard. When the hens stopped laying, had an accident or got into a fight, we ate them. I’m not overly fond of chicken either. Breakfast was served in the rehab patient’s room. On my first evening, an aide brought the menu for me to select breakfast, lunch and dinner for the following day. The menu was attached to a clipboard and was hard to manoevre with one hand. It was also hard to read when your brain didn’t understand what your eye was seeing and a large chunk of the page was missing. After a struggle, I managed to circle what I thought was toast, for my breakfast. Next day, breakfast arrived on a tray, a plate covered by one of those stainless steel warmers with a hole in the middle. The food service attendant lifted the lid with a great flourish and revealed scrambled eggs! “That’s not what I ordered,” I said. “It is,” she replied. I ate the toast, put the cover back on the eggs and pushed them away. The transporter came to get me for physical therapy and the incident was forgotten. At lunch time, once again what was on my tray was not what I had ordered. The next day the same thing happened at breakfast - scrambled eggs again! I was angry!

“This is not what I ordered,” I barked. “Yes it is!” came the stern reply. I hate this place! The food was bad enough to begin with and they couldn’t even get your order right. I began to keep count of the number of wrong breakfasts, making a mark on the edge of my bed table with the pen that is always lying there. On the twelfth day of scrambled eggs, I demanded to see the food service supervisor. She arrived as I returned from my third or fourth therapy session of the day. Her name was Ella and I knew her from my days of working at the hospital. A capacious, comforting yet commanding African American lady, she is the one who will solve my problem.

"I’ve been here for many days and my order has been messed up every single day. They keep bringing me scrambled eggs and I hate scrambled eggs, I would never order them."

“What’s wrong, honey?” she asked. “Ella,” I whined, “I’ve been here for many days and my order has been messed up every single day. They keep bringing me scrambled eggs and I hate scrambled eggs, I would never order them.” I heard the childish petulance in my own slurred words but was too mad about the eggs to be embarrassed. Ella was reassuring and told me it won’t happen again. I should just fill out my menu and they’ll

bring me whatever I order. Later, my rehab nurse came to tell me that I was fit enough to join the other patients in the day room and my breakfast will be served there from now on. Linda, the occupational therapist came, as usual, to help me through what is euphemistically labeled “activities of daily living”. It should be called atrocities of daily living. It involved going to the bathroom first. Linda helped me transfer from the wheelchair to the bed. This involved a hop, a skip and a lunge, sometimes making it to the bed, other times falling short and landing back in the wheelchair. A couple of times, I missed altogether and landed on the floor. Once on the bed, the struggle to get into my clothes began. The first few days in rehab, I declined to get dressed in my own clothes, choosing instead to go to PT wearing two hospital gowns, one on forward and the other backwards. I was alert enough to realise that indecent exposure could result from wearing just one. From this point on, not only did I not get breakfast in bed, but I had to get dressed to go to PT. Linda came the next morning and asked what clothes I would like to wear. My choice was limited to one of two sweat-suits brought from home. I chose the purple one. After a torturous visit to the bathroom and having completed the herculean task of getting myself back on the bed, I lay on my back, hanging from the ceiling and struggled to wind a leg that wasn’t there into pants that had something seriously wrong with them. By something wrong, I mean there is no opening for a second leg, even if I had one. To make matters worse, my catheter kept getting caught and yanked, producing an agonising pain. This exercise should be classified as torture. People have been prosecuted for less. Finally, after much grunting, groaning and gyrating, my lower half was clad. Linda showed me how to fasten my bra and put it over my head. I knew the drill: affected side in first, affected side out first. That assumes one has an affected side. I have no side at all. I battled to get the unruly, uncooperative appendage through the aperture that Linda has created above my head. It won’t go. After about twenty tries, I’m exhausted, slick from perspiration and completely stuck. I don’t

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FEATURE

know whether to laugh or cry. I’m on the edge of hysteria. Linda gives me a look and in an instant, we opt for laughter. She took pity on me and helped me finish getting my clothes on. I’m resplendent in the sweat-suit that the girls have brought from home. It’s very rumpled and has a few cat hairs on it. Now it’s time for the brace and shoes. Linda hands me the brace and patiently showed me how to lift up my affected leg with my unaffected hand. We are very careful not to say ‘bad leg’ or ‘good arm’. We are scrupulously non-judgmental about deadbeat appendages. After a half a dozen tries at snaking the foot into the brace, I feel my blood pressure increasing along with my frustration level. At the point that my AFO was about to become a UFO, Linda once again intervened. “You’ve done enough for one day. Good work. Tomorrow is another day.” I was finally ready to go to breakfast. Around the large table were several patients in varying states of disrepair. Some were dressed, albeit in a haphazard fashion, some were in hospital gowns. A couple of my table mates didn’t seem to be aware of their surroundings and quite a few were wearing at least part of their breakfast on their face or down their front. I was acutely aware of the state of other people in the room but painfully unaware of myself as I pushed up to the table. There was a place setting and a plate with the inevitable stainless steel lid. I lifted the lid from my plate and there they were again - scrambled eggs! A wave of intense anger surged through me as I slammed the cover back over the eggs.. “I. Didn’t. Order. Eggs!” I said, through clenched teeth. “You must have, food service only brings what is on your menu.” I looked at what else was on the tray. There was an English muffin. “They aren’t English, by the way.” I muttered. “They are as American as French toast!” I ate the muffin. I couldn’t get the tin foil off the top of the butter or jelly, so I ate it dry. I grabbed the carton of orange juice, stabbed the foil top with my fork and slurped it down through the holes. No one offered to help

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“They aren’t English, by the way,” I muttered. “They are as American as French toast!”

with anything and I vaguely recall that we are supposed to be independent. I’ve been in this room many times before but never to eat breakfast. As the director of occupational therapy, wearing a starched, white lab coat over street clothes, I had bounced into this room once a week, to face a roomful of stroke patients. In a forty-five minute exercise program I had instructed patients how to lift their affected arm with their unaffected arm, to stretch it above their heads, to swing to one side and then to the other and to march with their legs while seated in a chair. We had pointed our toes, or at least the toes on one foot, made circles with the ankle that moved and shrugged a shoulder or two to loud music emanating from an elderly radio in the corner of the room. I had hated every minute of it, straining not to show that I thought it was an exercise in futility, wanting it to be over so I could get on with the rest of my day. The daily grind continued. Every evening I filled out my menu card or would ask someone else to do it for me. I noticed that when I do it, I get eggs. When someone else does it, I get toast or oatmeal. Clearly this vendetta is personal! They don’t like me. Well, that’s OK because I don’t like them either! Day after day , I arrived at the day room, having been stuck in the doorway of my room, stuck in the hallway and stuck, again, in the doorway of the day room. The wheelchair

really should be replaced. I am a paying patient. I worked here for seven years. I should not be stuck with this worthless piece of junk that will not go in a straight line. After one particularly trying journey, instead of easing into my place at the table and following my established protocol of ignoring the eggs if they were there, and eating whatever else there was, I issued a proclamation. “If there are scrambled eggs on my plate today, I am throwing them at the wall!” Absolute silence followed and I soon found myself being wheeled very quickly back to my room. John didn’t come to take me to PT. “Yay!” The more appropriate response might have been “Uh-oh!” The psychiatrist arrived before lunch. I had been exhibiting signs of hostility and making threats that could be considered acts of aggression. I have also shown signs of not being in touch with reality. I also seem to be a little “depressed”. He wonders if medication would help. I wonder why it is that the light at the end of the tunnel must always be powered by a pharmaceutical company. “It’s the stupid medication they are already giving me that is making me act the way I am and if I had a plate of scrambled eggs at hand right now, I’d throw them at you!” Much later in my recovery I would learn that there was nothing wrong with the wheelchair and no conspiracy to feed me scrambled eggs - I was suffering from visual defects, denial and neglect associated with the stroke and also Anosognosia that convinced me that there was nothing wrong with me.

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INTERVIEW

‘Surely I wasn’t the only one who felt like this’ How a freak accident and a subsequently delayed diagnosis of brain injury changed Michelle Munt’s life forever. By Andrew Mernin. High above the M25, a buzzard cuts through the December sky. Scanning the tarmac below, it spots something edible and begins its rapid descent. At ground level, Michelle Munt is driving her smart car, completely unaware that her life is about to change forever. Traffic ahead suddenly slows. She takes her foot off the gas. The lorry behind should be slowing too. But in those crucial seconds of reaction, the buzzard has smashed beak-first into its windscreen. The driver can’t see the road, or Michelle, and sends her relative tin can of a car flying into the crash barrier. “I can’t remember much about it,” says Michelle of her accident in 2014. “I was conscious when the paramedics came but I don’t think I was making any sense. They quickly decided they needed to airlift me to a London hospital and had to knock me out for the flight as I was getting agitated.” A fellow motorist noticed the company signage on her car and called her colleagues at the London Hairdresser Apprenticeship Academy; who notified her partner James. “The first thing I remember is someone asking me if I knew who James was. They were asking where I lived and where I worked and I couldn’t answer. “I was in hospital for 10 days. Every day they would do an assessment, asking me to

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remember the words red, horse, velvet and church and not once did I get it right. “It was coming up to Christmas and they did another assessment to see if I was able to cope at home. This involves making a cup of tea. Initially I didn’t even notice I hadn’t put the kettle on properly. Then once I did make the teas, the woman assessing me had asked for a black tea and I’d put milk in it but I blamed her, rather than taking responsibility. I said ‘nobody has black tea so it’s a stupid thing to ask for’. “To me there were a few things that showed my thinking process wasn’t quite right – the fact that I was so defensive and aggressive about the cup of tea, just wasn’t me. I would normally have said ‘Oh my God, I’m sorry.” Despite feeling unprepared to go home, Michelle was discharged. It wasn’t until six months later than an MRI picked up her diffuse axonal injury. Before then, she struggled to make sense of her post-accident self. “I had foot-drop, weakness in my left side and they had just about managed to get me up and walking, but I was apparently fine to go home. When I first left hospital, there was no mention of a brain injury. "Obviously, I had been in the neuro department so there was some idea, but we were left to assume that perhaps I had

concussion. They kept saying that 'we don’t really know what is causing these symptoms but it will probably get better on its own'. They didn’t really explain why I was struggling cognitively.” In the months before diagnosis, Michelle struggled to read and write and it took several weeks for rehabilitation helping her to stand and walk to take effect. Partner James noted that she had become a completely different person, describing her as ‘incredibly vacant’. The diagnosis came as part of Michelle’s legal case and was the catalyst for Michelle’s new role as a brain injury crusader. “I always thought my case couldn't be that unique because it was a car accident and it wasn't that bad. If you saw the car afterwards, you wouldn't think that the driver had sustained a brain injury. “I started blogging about brain injury and found lots of other brain injury survivors were connecting with me. They were saying things like ‘I've been looking for the words to help to describe this and how to talk about it. Thank you so much’." This was the starting point for Michelle’s enterprise, Jumbled Brain, which now coaches brain injury survivors and carers across the globe. Part of this is a six-week self-study course featuring videos and online content. Her website asks fellow brain injury survivors: ’Do you feel like something is missing? Everyone says you’re doing great and you should be thankful, and you are. But what if I told you that you don’t have to settle for the way you feel?’ She also runs one-to-one consultations shaped by her own experiences, and oversees a closed Facebook group; enabling thousands of users to share their hopes and fears with people going through the same experiences. “It’s a very talkative group with a lot of activity all the time. It’s great because members don’t have to worry about anything they say being shared all over the internet.” Michelle also draws on a previous career in recruitment to help brain injury survivors back into the workplace. Her ‘Ace the interview masterclass’ and other videos on ‘nailing the interview’ aim to revive careers

INTERVIEW

lost in the collateral of brain injuries. “The interview process is scary for most people anyway. But with a brain injury, you might feel you've got something weighing heavily on you, or be worried that you've got a gap on your CV. "You might also think that the interviewer is going to discriminate against you because of the brain injury. “There is also a piece about what employers can ask you and what they shouldn't ask you, what to tell them and when to tell them. You don't want to get a job and then turn up on day one and say ‘oh by the way I can't do this because I've got a brain injury’, but also you don't want to be in a position where the employer gets absolutely terrified and turns you down as brain injury is such a big term. “For me, when I had to give up my job and I lost my career, I lost my identity. You almost feel like you need a new purpose again. “When you have a brain injury there is a disconnect between what your life feels like and where you want to be. You quite easily end up over-criticising yourself and you just lose all of your confidence. “So I am helping them with that too. I help them to think about what their goals really are and try to find a way towards them. Especially when you have symptoms like brain fog, it is really difficult to think clearly and to put action plans together. I work with clients on thinking processes and how they can really take charge of their lives again, because when this has happened to you it feels a lot like everyone else has a role; the doctor, the physio and so on, but you are just someone who is doing what you’re told. Whereas I help them to regain some of that control over their own lives.” Michelle finds much of her following in the US. “Obviously, being online enables me to access a bigger audience than just the UK. What I like about being online is that if you do sessions which are pre-recorded, you can download them when they’re ready. Quite often when you've got a brain injury and you're struggling with fatigue or you can't concentrate, someone giving you appointments to say ‘we are going to talk about this right now’ might not work for you.

I help them to think about what their goals really are and try to find a way towards them

Individuals need to be able to engage with it when they feel they can take it on board.” Sometimes Michelle’s work is ad-hoc – a quick blog or video dispersed into the brain injury network. Often James is mentioned. “We’ve been together for 11 years and for four of them I had a brain injury. A lot of people are interested in James because, for a lot of other survivors, their support structure fails. Family and friends turn away from them, so a lot of them do like to use James as an example that it doesn't have to be like that. “In relationships it can be difficult to have conversations, especially if you are talking to someone who hasn't got a great memory. They might say the same things again and again and it gets difficult for others who don't quite know what they should or shouldn’t say. It's really hard on so many levels. "I know I was sometimes a nightmare and for a lot of people that is a type of pressure that they just can't deal with and need to walk away from. The more that such relationships can be protected, the better the outcome.” www.jumbledbrain.com

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INSIGHT

Brain injury and the great outdoors

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INSIGHT

A growing body of evidence links exercise and outdoor activity with recovery from traumatic brain injury (TBI). Here Fiona Nixon, of Calvert Reconnections, explains the benefits of physical activity in rehabilitation.

Exercise can result in an increase in self-esteem and self-worth in all age groups from children to older adults

The impact of a TBI on an individual may be wide-ranging with not only a reduction in cognitive abilities and executive function, but also in mental health difficulties, problems in psychosocial functioning and a reduction in self-esteem

family’s sense of burden amongst people with TBI. Another study of adolescent and young adult inpatients, evaluating cognitive, behavioural, depressive and self-awareness disorders (Viguier et al, 2001) highlighted a discrepancy between patient and clinician’s evaluations suggesting a lack of self-awareness of behavioural and cognitive disorders in TBI patients. It was mooted that correlations of depressive mood with anxiety and cognitive complaints seemed compatible with some degree of lack of self-awareness of cognitive and behavioural difficulties in the TBI patient group. A further study on identity, grief and selfawareness afterTBI (Carroll et al, 2011) revealed that 90 per cent of participants suffered from low self-esteem at levels deemed clinically significant. TBI is also a huge hidden disability within prison populations, according to the University of Salford. Prisoners who have had head injuries are more likely to experience a variety of mental health problems including severe depression and anxiety, substance use disorders, anger and suicidal thoughts. Physical exercise has the potential not only to improve physical health but also to have a positive effect on mental alertness and mood in the general population. Exercise can result in an increase in self-esteem and self-worth in all age groups from children to older adults (Baumeister et al, 2003). Studies on the benefits of outdoor activity in addressing problems associated with TBI point to improvements in self-esteem, self-

TBI is not a single event, but can be a chronic and often progressive disease with long-term consequences. Even after an ostensibly good recovery, patients might have to live with a continuing process of coping and adaptation. TBI represents 30-40 per cent of all injuryrelated deaths and neurological injury is projected to remain the most common cause of disability from neurological disease up to 2030 - two to three times higher than the contribution from Alzheimer’s or cerebrovascular disorders. A report by the Centre for Mental Health - Traumatic brain injury and offending. An economic analysis - states that approximately 1.3 million people in the UK are living with head injury-related disabilities, with these injuries causing around 160,000 hospital admissions each year. TBI also has a marked impact on the economy, at a cost of £15bn a year. This figure comprises lost work contributions, premature death and health and social care costs. This £15bn does not, however, include the human cost of head injury to the injured and their families’ wellbeing and quality of life, which is clearly the biggest cost. The impact of a TBI on an individual may be wide-ranging with not only a reduction in cognitive abilities and executive function, but also in mental health difficulties, problems in psychosocial functioning and a reduction in self-esteem and self-awareness. The results of a study on longer-term outcomes (Hoofien et al, 2001) reveal relatively high rates of depression, psychomotor slowness, loneliness and the

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INSIGHT

confidence, increased control, memory and planning. A one-year outcome study of a three day outward bound experience (Lemmon et al, 1996) recorded a range of positive outcomes. At the one-year evaluation, 83 per cent of the participants ranked themselves above their pre-course rating in an understanding of their strengths and limitations. Other positive changes over the same time span included: ability to rely on others (50 per cent), higher self-esteem (58 per cent) and improvement in problem solving (50 per cent). It was commented that the outdoor challenge course allowed therapists to help the participants recognise and acknowledge their thoughts, feelings and behaviours during the course and that, one year later, the participants were calling on this understanding to improve their daily functioning. Another UK pilot programme (Walker et al, 2005) incorporated a context-sensitive approach to cognitive rehabilitation with a focus on goal planning with goal attainment

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INSIGHT

as an outcome measure. The results revealed a high level of achievement (over 80 per cent) on selected, identified, specific and mainly practical goals. In discussing the results, the authors considered that the strength of the project appeared to lie partly in the motivation provided by the outdoor activity course; which appeared to later encourage participants to work towards broader goals. An Australian study (Thomas, 2009) was similarly positive. Participants attended a standard nine-day outward bound course adapted to meet the needs of the participants. Fortnightly meetings over a period of three months were then facilitated by rehabilitation staff who had also attended the course. The focus of these meetings was on “restructuring” tasks including achievement of individual goals, problem solving, further life planning and social skills development. A comparison group matched as far as possible to the experimental group who did not attend the course was also evaluated using quality of life analysis. The findings were as follows: 1. Understanding: Participants reported that they gained insight into personal strengths, limitations and unexpected capabilities as a result of engaging in the programme’s activities. 2. Re-integrating identity: Participants identified increases in self-confidence and competence and this had a positive impact on their sense of identity. Several participants noted that they felt they had more control and responsibility for the direction of their life. 3. Acceptance: Participants stated that the outdoor activity course had helped in the processing of their acceptance of the impact of their injuries on their lives. 4. Restructuring: Participants who attended most of the follow-up groups were seen to report most improvements as shown by Quality of Life Inventory (QOLI) evaluation. This may be the result of the follow up group providing time for reflection, to set and refine personal goals as well as group encouragement and support.

The Lake District Calvert Trust ABI Rehabilitation Programme TBI can have profound long-term consequences, not only to individuals, but to their families, carers and society as a whole. The impact of a TBI on an individual is immediate but TBI survivors may also have to live with a continuing and developing need of coping and adapting (Maas et al, 2017). It has been shown that post-TBI, an individual may have to cope with a reduction in cognitive abilities, a reduced ability to plan and make decisions, mental health difficulties such as depression, and psychosocial problems with a lack of self awareness, self esteem, self control, apathy or aggressive behaviour (Levin et al, 1991). Physical exercise is known to improve physical health and also to have a positive effect on mental alertness and mood in the general population. The pathology associated with TBI can be characterised by a reduced capacity of neurons to metabolise energy and sustain synaptic function which often results visibly in emotional and cognitive problems (Wu et al 2011). The anti-neurogenerative effects of exercise are beneficial to neurocognitive functioning and neuroplasticity, while the detrimental effects of TBI on the vasculature may be reduced by carefully selected exercise/activity programmes. It has been suggested that the concept of exercise providing a “scaffolding” may aid the understanding of the benefits of exercise to the injured brain. It is thought that physical exercise reinforces the adaptive processes of the brain post-TBI, facilitating the development of existing networks and helping to compensate for those lost through damage (Archer, 2011). The Lake District Calvert Trust (LDCT), which has provided outdoor activity for people with disability over the last 40 years, has developed a proposed post-acute ABI rehabilitation programme which will support brain injury survivors in a new residential centre. It was developed with the support of clinicians and academics and the limited, but positive,initial results of research of outdoor activity in rehabilitation following TBI. The rehabilitation programme, delivered by a team of clinicians and specialists in outdoor activity, will be tailored to each individual participant’s needs, with the aim of providing the tools needed for people to reach and maintain their optimal physical, sensory, intellectual, psychological and social functional levels. Experiential learning and rehabilitation through outdoor activity is therefore not simply about the specific skills learned or the satisfaction of completing a challenge, there are also improvements in self-esteem, self awareness and self-confidence, lifting of mood and clinical depression, as well as cognitive improvements. Importantly, learning can then be internalised, and transferred and applied to daily life. The LDCT ABI Rehabilitation Programme acknowledges and supports the recommendation of The Lancet Neurology Commission Report in 2017: “There is a clear need for studies to inform guidelines on rehabilitation approaches and optimum timing of rehabilitation in TBI. Such guidance would need to take into account the growing evidence that the diversity of disability after TBI is best addressed through a holistic approach to rehabilitation delivered by a multidisciplinary team." The LDCT will be carried out at PHD level in conjunction with Newcastle University.

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STUDY GUIDE

Post-traumatic

epilepsy By Dr. Edmund Bonikowski, of National Neurological Rehabilitation Chambers.

Seizures may occur after traumatic brain injury; these are known as post-traumatic seizures (PTS). However, not everyone who has post-traumatic seizures will continue to have post-traumatic epilepsy, because the latter is a chronic condition. The terms PTS and PTE are used interchangeably in medical literature Post-traumatic epilepsy is defined as two or more seizures, thought to be related to the injury itself, that follow a traumatic injury occurring later than one week following the injury. Patients with TBI are at higher risk for the development of epilepsy relative to the general population. As for the statistical likelihood of epilepsy in TBI patients, reports propose varying ranges with many resting anywhere from 3-20 per cent dependent on the severity of injury, which if severe, could increase the potential to approximately 40 per cent. PTE ranges from simple partial, complex partial to secondarily generalised seizures. The definitions of each, from the Epilepsy Foundation, are as follows: • Simple partial seizures, usually lasting around two minutes, is characterised as either motor, sensory, autonomic or psychic seizures in which the individual is usually alert • Complex partial seizures, lasting one to two minutes, include automatisms (such as lip smacking) in which the individual is unaware of their surroundings • Secondarily generalised seizures, beginning in one area of the brain, and spreading to both hemispheres, lasting anywhere from one to three minutes. These seizures are convulsive and it can take much longer for the patient to recover. Factors such as age, previous seizures, smoking, genetics, timing of seizures and types of injury, all play a role in the potential for the development of PTE. Age plays a role in the latency period of seizures following TBI. In one study, a latency period of around three years existed in those who were over 14, while there was an 18-year latency

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period in those who were two years or younger at the time of the trauma. Seizures following TBI are defined via three categories: immediate, early and late onset. •Immediate onset seizures occur within 24 hours following the injury •Early onset seizures typically occur less than a week after injury and are often seen as a precursor for late seizures. •Late onset seizures are found to occur more than a week after the injury and have been seen to occur for years following. These late seizures appear to increase the likelihood for PTE. When comparing early versus late onset seizures, the different risk factors associated with each have been identified. •Risk factors for early onset seizures comprise: acute intracerebral hematoma, acute subdural hematoma, younger age, increased injury severity and chronic alcoholism. •Risk factors for late onset seizures include early post-traumatic seizures, brain contusion, subdural haematoma, prolonged posttraumatic amnesia (> 3 days), increased injury severity, depressed skull fracture and older than 65 years of age at the time of injury. Most notable of all the previous risks, is the severity of the injury itself. Common clinical markers of head injury severity include the Glasgow Coma Score, length of post-traumatic amnesia, length of loss of consciousness, extent of brain damage and brain volume loss shown on CT scan. The relative risks (RRs) for developing epilepsy after various brain insults have been summarised in the chart opposite. As shown, patients with severe TBI have a 29-fold increased risk of developing epilepsy compared to the general population. This RR is exceeded only by brain tumor (RR = 40) and subarachnoid haemorrhage (RR = 34). Not surprisingly, the RR for epilepsy after TBI is strongly related to the severity of head injury. There is a four-fold increased risk after moderate TBI and only a 1.5-fold increased risk after mild TBI. Penetrating versus closed head injuries damage the brain differently, leaving an

STUDY GUIDE

Brain tumour Family history Simple febrile seizures Alzheimer disease SAH Haemorrhagic stroke Bacterial meningitis Encephalitis Mild TBI Moderate TBI Severe TBI

2.5 2

7.5

9.7 4.2

1.5 4

29 10

RRI altered likelihood for PTE. While closed head injuries often lead to axonal tearing, diffuse oedema and ischemia, causing the release of excitatory amino acids and other toxic chemicals that can cause additional damage, penetrating injuries produce a cicatrix (the scar of a healed wound) in the cortex, increasing the likelihood of PTE to about 50 per cent versus 30 per cent for the closed head injuries. Late seizures, which have been noted as a risk factor for epilepsy, are seen to be due to the damage of the cortex by free radicals that have been generated following the deposit of iron and the increased toxic level of glutamate. Studies have also proposed that the reorganisation of the circuitry in the brain can lead to epileptogenesis which is defined as the process by which a non-epileptic brain transforms into one that produces unprovoked seizures through the development of brain tissue capable of seizures. Current lines of treatment are structured in a step-wise process beginning with antiepileptic drug (AED) treatment, then moving to resection surgery if AED treatment is not ultimately effective and on to vagus nerve and deep brain stimulation for medically

refractory epilepsy. While seizure prophylaxis can prevent early onset seizures, no available treatments effectively prevent late-onset seizure. To be diagnosed with PTE, a person must have a history of head trauma and no history of seizures prior to the injury. Witnessing a seizure is the most effective way to diagnose PTE. Electroencephalography (EEG) is a tool used to diagnose a seizure disorder, but a large portion of people with PTE may not have the abnormal "epileptiform" EEG findings indicative of epilepsy. EEG can be useful to localise the epileptic focus, to determine severity, and to predict whether a person will suffer more seizures if they stop taking antiepileptic medications. It is frequently not possible to detect the epileptic focus using neuroimaging (MR and CT). For a diagnosis of PTE, seizures must not be attributable to another obvious cause. Seizures that occur after head injury are not necessarily due to epilepsy or even to the head trauma. Like anyone else, TBI survivors may suffer seizures due to factors including imbalances of fluid or electrolytes, epilepsy from other causes, hypoxia (insufficient oxygen), and ischemia (insufficient blood flow to the

brain). Withdrawal from alcohol is another potential cause of seizures. Thus, these factors must be ruled out as causes of seizures in people with head injury before a diagnosis of PTE can be made. People with PTE are thought to have shorter life expectancies than people with brain injury who do not suffer from seizures. The results of one study (2 in references below) indicate that individuals with late posttraumatic seizures (LPTS) in the first two years post-TBI have a very high mortality rate at a younger age compared to individuals with TBI and no LPTS and those with epilepsy in general. Even without adjusting for age, those with TBI and LPTS have nearly three times the mortality rate of those with TBI alone, 27 per cent versus 10 per cent in this study. They die 15 years younger than those who have TBI alone, but do not differ significantly in duration post-TBI or in initial severity of injury as measured by GCS or the severity of mid-line shift. Compared to people with similar structural brain injuries but without PTE, people with PTE take longer to recover from the injury, have more cognitive and motor problems, and perform worse at everyday tasks. This finding may suggest that PTE is an indicator of a more severe brain injury, rather than a complication that itself worsens outcome. PTE has also been found to be associated with worse social and functional outcomes but not to worsen patients' rehabilitation or ability to return to work. However, people with PTE may have trouble finding employment if they admit to having seizures, especially if their work involves operating heavy machinery. References 1.A Population-Based Study of Seizures after Traumatic Brain Injuries: John F. Annegers, Ph.D., W. Allen Hauser, M.D., Sharon P. Coan, M.S., Walter A. Rocca, M.D., M.P.H.: N Engl J Med 1998; 338:202.Mortality in Late Post-Traumatic Seizures: Jeffrey Englander, Tamara Bushnik, Jerry M. Wright, Laura Jamison, and Thao T. Duong: J Neurotrauma. 2009 Sep; 26(9): 1471–1477.

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EVENTS

DATES FOR YOUR DIARY

JULY 19/

SEP 19/

04-05

11-13

MS Frontiers

This is the UK's biggest biennial conference for MS research professionals. The event will bring together scientists, clinicians and healthcare professionals to network and share the latest advances in MS research. Further information can be found at: www.mssociety.org.uk/research/forresearchers/ms-frontiersbooking.

Single day conference hosted by the Motor Neurone Disease Association.

To list your event in NR Times contact jane@aspectpublishing.co.uk Please check with contacts beforehand that arrangements havenâ&#x20AC;&#x2122;t changed. Events organisers are also asked to notify us at the above address of any changes or cancellations.

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The Motor Neurone Disease Association (MNDA) is hosting its annual conference, with facilities provided by the Radisson Blu Hotel at East Midlands Airport. The conference is an opportunity to learn more about MND, the charity's work and progress, as well as to find out more about the care and support available to MND individuals. It also provides an opportunity to meet volunteers, members, trustees and staff involved with the association. There will be a range of information and advice stands, as well as the opportunity to sample complementary therapies on the day. Further Information can be found at: www. mndassociation.org/conference-events/ agm/

Joint European conference on research developments in MS. This year the Annual Congress of the European Committee for Treatment and Research into Multiple Sclerosis (ECTRIMS) is being hosted alongside the 24th Annual Conference of Rehabilitation in MS in Stockholm, Sweden. The scientific programme is full of new discoveries, up-and-coming ideas and interesting discussions on the relevancy and importance of MS research in 2019. More information can be found at: www.ectrimscongress.eu/2019.html

22-26

International Congress hosted by the International Parkinson's and Movement Disorder Society. This 4-day event in Nice, France, features parallel events running throughout the conference. Further information can be found at: www.mdscongress.org/ Congress-2019.

EVENTS

OCT 19/ 04-06

EHA European conference discussing developments in Huntington's Disease research. The European Huntington's Association (EHA) is hosting its annual conference from the heart of Europe, Bucharest. The main focus of the conference is a discussion into the the needs of everyday life and how to cope with Huntington's Disease. The conference will be accessible to those who do not have specialised knowledge on Huntingtons. More information can be found at: www.eha2019.no/program

09-12

The European Federation of Neurorehabilitation Societies' Annual European Congress. The European Congress of Neurorehabilitation will take place in Budapest, Hungary. As part of a busy programme, the congress will host a teaching day as well as interactive seminartype workshops. For further information, please see: www.ecnr-congress.org.

19 - 23

A national event presented by Re:Cognition Health. This one day event has been crafted by experts in private mental health and cognitive care whose clinical trials have impacted research in mental cognitive disorders. Pullman St Pancras Hotel, London. Further information can be found at: www. abisolutions.org.uk/index.php?page=9

Since the Society for Neuroscience turns 50 this year, this will be a celebration of fantastic research and analysis into future developments in neuroscience. This is the premier forum for neuroscience discussion and advancement of knowledge, with numerous speakers, workshops and special satellite meetings. For more information see: www.sfn.org/Meetings/ Neuroscience-2019

Seeing is Believing: mTBI and PTSD, unlocking the complexity and controversy.

14-15

Conference hosted by the British Society of Rehabilitation Medicine and the Society for Research in Rehabilitation. Engage in what promises to be a stimulating joint conference. Registration is now open. Further information upon submission and registration can be found at : www.bsrm.org. uk/events/bsrm-events

Neuroscience 2019. International festival hosted by the Society of Neuroscience.

NOV 19/ 03 - 05

MS Trust Annual Conference.

16-18Â

The American Society of Neurorehabilitation's annual meeting, (a satellite event for the Neuroscience 2019 festival in Pittsburgh). The meeting will focus on the advances in the basic and clinical science of neurorehabilitation, providing opportunities to share knowledge, experience and developments in the field. Double Tree by Hilton, Chicago, The Magnificent Mile. Booking information to be found at: www.asnr.com.

This yearâ&#x20AC;&#x2122;s conference focuses on the needs of people across their disease trajectory from diagnosis to end of life, highlighting the importance of delivering holistic care to everyone with MS. This three day event gives the opportunity for MS teams to update their knowledge surrounding the latest research in MS treatment and care as well as the opportunity to network with other MS professionals. Further information can be found at: www.mstrust.org.uk/ event/ms-trust-conference.

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CLOCKING OFF

Feline fine A brain injured woman has attributed her ongoing recovery to a flea-bitten stray cat she found wandering the streets of Derby. Luci Mahon, 43, says ‘Douglas’ has not left her side since she rescued him just before she suffered brain damage as a result of taking medication last year. She told her local paper: "All the time I've been ill, Douglas has been amazing. He's never far from my side, and even though I'm not able to leave the house. I can never feel lonely with him around."

Teenage kicks Parents with teenage kids may need to think again before they berate their offspring for sleeping in. For new research suggests sleep-deprived teenagers are more likely to have risky sex while drunk or on drugs. US researchers say that sleeping eight hours a night, or the equivalent through regular lie-ins, allows the teenage brain to refuse impulse choices. Experts at the RAND Corporation, a research organisation in the US, studied 1,850 teenagers between 2013 and 2017.

Fancy bat The phrase “we’re on the same wavelength” may no longer be a mere metaphor. Scientists have discovered that brains – albeit those of bats – can synchronise with each other during social activities. “Whenever the bats were socially interacting, you could see these very robust correlations in brain activity,” said Michael Yartsev, an assistant professor of neurobiology and bioengineering at UC Berkeley. “This is a very core phenomenon that, for two decades, people have been excited about in humans. Now that we’ve observed it in an animal model, it opens the door to very detailed research of it,” he added.

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Sunflower Clap scheme blossoms trap? People with brain injuries can take advantage of a new scheme when jetting off on holiday this summer. Airports across the UK are supporting Headway’s sunflower lanyard scheme. Travellers wearing the lanyard can be identified by airport and airline staff as having a hidden disability and possibly being in need of additional assistance. See more on headway.org.uk.

When the storm clouds gather, as they definitely will this summer in Blighty, why not partake in the latest wellbeing phenomenon? Listening to raindrops, thunder and lightning – aka ‘thunder therapy’ – apparently eases anxiety and is the hottest fad in the wellness world. Its origins are found in a 2016 study by Brighton and Sussex Medical School and its growth is marked by the emergence of more and more apps dedicated to the practice.

We are recruiting Trustees

Registered Manager

Do you have expertise and experience in neurorehabilitation and / or business management? If so we’d like to hear from you…

Can you deliver an exceptional level of care and service? Are you passionate about the promotion, monitoring and growth of our ground-breaking Calvert Reconnections offer? If so we’d like to hear from you…

We are particularly interested in recruiting Trustees with lived experience of an ABI or other disability, as well as senior professionals and managers with experience of neuro-rehabilitation in a residential setting.

As the Registered Manager you would: •

As a Trustee, you would:

•

• •

•

Give guidance and active support to the development of Calvert Reconnections, its services and senior management team Be a key member of the Calvert Reconnections Committee Act as an Ambassador for the Centre as it opens its doors and seeks awareness and recognition Sit on the Lake District Calvert Trust Board and engage, where relevant, in matters relating to the wider Trust.

For further information, please email trustees@calvertreconnections.org.uk Deadline for applications: Fri 12 July 2019

The Centre Opening in early 2020 in the beautiful English Lake District, Calvert Reconnections is the UK’s first transitional neurorehabilitation centre to combine multi-disciplinary clinical therapies with outdoor physical activity. For over 40 years, The Lake District Calvert Trust has challenged disability through outdoor adventure; now, working together with leading clinicians and academics, Calvert Reconnections will provide a ground-breaking, world-class rehabilitation programme tailored to support individuals with ABI in their recovery in a truly inspirational setting.

Call: 017687 72255 Email: info@calvertreconnections.org.uk www.calvertreconnections.org.uk The Lake District Calvert Trust is a registered charity (Charity No. 270923)

•

Be accountable for maintaining exceptional levels of care and service within the centre. Be CQC Registered, responsible for ensuring compliance with regulatory requirements Have a passion for ensuring the highest levels of care for the Trust’s residents. Be responsible for developing policies and procedures, training staff, demonstrating best practice, monitoring standards and managing small teams. Work with the Clinical Lead and overall LDCT Centre Director to manage strategic planning for developments within the centre.

For further information, please email info@calvertreconnections.org.uk Deadline for applications: Mon 22 July 2019

“The most exciting development in brain injury rehabilitation for 20 years” Bill Braithwaite QC and Trustee of Calvert Reconnections

The UKâ&#x20AC;&#x2122;s only specialist Chambers run by neurological rehabilitation professionals

Need a court report by a medico-legal expert in brain, spinal cord or peripheral nerve injury?

Did you know we offer in house training for solicitors on the variety of brain injury?

Instruct us and find out more: nnrc.org.uk 96

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enquiries@nnrc.org.uk

0191 258 3338

Our highly experienced medico-legal expert clinicians are mentored by Professor Mike Barnes and Dr Edmund Bonikowski, who between them have undertaken over 4,000 assessments of clients in personal injury and clinical negligence cases over the past 20 years.

@RehabChambers