NR Times (Q4 2019 edition)

ISSUE 12 Q4 2019

WOMEN’S OWN Female concussion in the spotlight

HOME SCANDAL The families trapped in a failing system

QUARTERLY

OUT OF THE SHADOWS Making life matter again after brain injury

2020 VISION Tech giants unveil their rehab innovations

PERFECT HARMONY RRP £9.99

How music therapy is transforming stroke care

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WE LC O M E

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

2019 was another year of progress in the hunt for new brain and spinal treatments.

Among the most exciting breakthroughs of recent months was the discovery that a cheap and commonly available drug could prevent fatalities caused by head injury.

Tranexamic acid slows the breakdown of blood clots and is already used to prevent heavy bleeding following traumas in other parts of the body - for example in the aftermath of shootings or stabbings.

But in October, scientists discovered that the drug could also help people with head injuries alone.

In mild to moderate traumatic brain injuries, they concluded, it could be administered rapidly, saving countless lives.

Patients given tranexamic acid within three hours of injury had a 22 per cent lower risk of death than those given a placebo: of 2,846 such patients given tranexamic acid, 5.8 per cent died, compared with 7.5 per cent of the 2,769 patients given placebo.

Further evidence of this is expected in 2020.

Meanwhile, 2019 research highlights in spinal injury care include the ongoing advancement of regenerative medicine. Utilising stem cells has long been studied as a possible treatment for paralysis from spinal cord injury. In January 2019, the Japanese government even took the controversial step of approving such a treatment - despite some experts voicing concerns that evidence was insufficient at the time. In the months since, various studies have stepped up the search for more of this much-needed evidence. One small-scale, but headline-grabbing, study published by the US-based Mayo Clinic in November, saw stem cells derived from a patient's own fat injected into his lumbar spine. The patient had plateaued at six months after his injury in terms of improving his physical function. Yet over 18 months following the injection, his physical and

occupational therapy, sensory and mental health scores all improved. Of course, further studies are needed to scientifically verify the effectiveness of stem cell therapy for paralysis from spinal cord injury - but the news raised hopes that a revolution in spinal injury treatment is indeed on the horizon.

We will endeavour to report on more exciting neurorehab research in 2020.

Until next time, we wish you a happy and prosperous New Year.

Andrew Mernin, editor andrew@aspectpublishing.co.uk

Sales Gary Wilding / Gary@aspectpublishing.co.uk Chloe Hayward / Chloe@aspectpublishing.co.uk Design Aimee Thompson aimee@aspectpublishing.co.uk Editorial contributors Deborah Johnson, Ethan Sisterson

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.

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AC PIN

ACPIN International Multidisciplinary Conference 2020 In collaboration with the Primary Care and Community Neurology Society 29th April-1st May 2020 The 2020 conference theme aims to strongly focus on​driving evidence into practice through examining our rehabilitation culture, and identifying possibilities and drivers for change both at the patient and therapist level. We want to emphasize the conditions for the high intensity aspect of rehabilitation as one area including how change is possible and what it entails.

The impact of what we can achieve if we all have a shared vision, understanding what underpins good practice and how to achieve it, forms the foundation of this conference.

As well as the Conference, we are holding ​ highly practical and thought provoking workshops on the 29th April 2020.

These workshops will cover : 1. Hemiplegic Shoulder Pain & Spasticity led

by Dr Stephen Ashford and Dr Praveen Kumar exploring different assessment approaches for shoulder pain that can be applied in clinical practise, referencing musculoskeletal examination techniques that are applicable to the neurological patient 2. A Gait Laboratory led by Dr Sue Barnett exploring the sensory, motor and cognitive contributions to impaired gait in those with neurological conditions 3. The Robotics led by Prof Praminda CalebSolly, will explore how new technologies change experiences of disability and community over time

4. The Strength Training led by Tim Sharp and Gary Morris aims to explore and understand the components of what a balanced strength programme consists of and how this relates to improved performance of functional activity 5. Constraint Induced Movement Therapy (CIMT) led by Annie Meharg, will explore the core components of CIMT and provide an opportunity to practice CIMT training techniques.

The conference programme is packed with stimulating discussions aimed at current policy and practice. Excitingly, there will be an update on the current ACPIN Functional Electrical Stimulation guideline project and the opportunity to participate in a focus group for FES. If you are interested in submitting an abstract this can be done via the abstract submission portal (Oxford Abstracts): app.oxfordabstracts.com/login?redirect=/ stages/1346/submissions/new Don’t delay and book your ticket today, and keep checking the ACPIN website for updates on speakers as they are added to the programme www.acpin.net/2020conference/.

Early bird ends on the 31st January 2020.

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CONTENTS

10 C O NFE RE NC E RO UND- UP UK brain injury experts plot a brighter future

0 8 N EWS

22 "THE WHOLE PROCESS WAS SHOCKING"

Sports concussions, AI possibilities, drug trial breakthrough and more

The motor neurone disease patients trapped in a failing system

44 L E GAL PARA DOX Workplace injury survivors battle for justice

2 8 S TATE OF TH E R EHAB NATI ON American research leader's manifesto for change

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C O NTE NT S

3 8 F IN ELY TU NED

47 2020 VIS IO N

Music and stroke recovery - the perfect duo

Rehab tech giants share their latest innovations

62 O UT O F THE S HA DOWS Making life matter again after injury

5 4 WOMEN'S OWN Why female concussion needs closer focus

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N EWS AN ALYSI S

Football and the brain research breakthrough The last quarter has been a game-changer in terms of researching links between heading footballs and the onset of neurological conditions, as NR Times reports.

The inquest of former footballer Jeff Astle in 2002 famously concluded that his death following dementia was a result of industrial disease caused by heading footballs.

Since then various studies have provided further evidence of such links but nothing as comprehensive as the University of Glasgow’s recent effort.

The research, published in October, has produced perhaps the most credible evidence to contribute to this subject.

The FIELD (Football’s Influence on Lifelong Health and Dementia Risk) study analysed the medical records of over 7,000 former professional male footballers in Scotland from 1900 to 1976 and compared them against those of the general population.

The results show that footballers are at a much higher risk of suffering from a number of different neurodegenerative diseases compared to the general population.

Those footballers in the study were five times more likely to suffer from Alzheimer’s disease, four times more likely to be diagnosed with motor neurone disease and twice as likely to get Parkinson’s disease.

In total, the study claims that repeated heading of a football increases the risk of contracting a neurological disease in later in life three-and-a-half fold.

FIELD was funded by the Football Association (FA), the Players Football Association (PFA) and NHS Scotland.

Its results are perhaps the loudest wake-up call yet for custodians of the game about its risks on the brain; yet the search for more evidence and understanding of this issue goes on.

I think we need to take whatever evidence there is and make sure we act upon it

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Dr Willie Stewart, who led the study, stresses that this is just the start in terms of finding out more about links between football and these conditions.

“An important aspect of this work has been the ability to look across a range of health outcomes in former professional footballers,” he says.

“This allows us to build a more complete picture of health in this population. Whilst every effort must be made to identify the factors contributing to the increased risk of neurodegenerative disease to allow this risk to be reduced, there are also wider potential health benefits of playing football to be considered.”

Media scrutiny of the dangers of football intensified over the last decade, partly as the deteriorating health of a number of England’s 1966 World Cup winning side emerged. Three members of that squad - Nobby Stiles, Martin Peters and Ray Wilson - were all diagnosed with dementia in their later years.

Jeff Astle’s daughter Dawn has also worked tirelessly to keep the issue in the media spotlight since the landmark coroner’s report about her father.

The latest findings clearly have implications for players at all levels and age-groups within the game.

Steven Shaw, a sports scientist and therapist who has worked in grassroots and school football, believes the FIELD study is certainly worrying; and should prompt immediate action.

“I think we need to take whatever evidence there is and make sure we act upon it. Otherwise we are going to lose a lot of people to dementia which could possibly be prevented.

“Heading is very much part of football, but do seven, eight and nine-year-olds need to be doing heading in training? For me, no.

“I don't see the need. I think its negligence if you’re making a child head a football repeatedly. It's crazy. It will only come from a rule change to prevent heading in the game.”

NE W S A NA LY S IS

Some football organisations have indeed responded to these and other, less recent findings about the dangers of heading footballs.

Bournemouth AFC, for example, has banned all heading in its youngest age groups within its academy system. In 2016, the US Soccer Federation also banned all heading for players under the age of ten.

Shaw welcomes such measures but believes they do not completely solve the issue.

“If you invented football from day one now, and someone said ‘I think you should be able to head the ball’, the response would be ‘why? Why would you want people to head a ball?’

“Bournemouth is a good example of a forward-thinking medical department. I think we’ll see a lot of other professional teams take similar changes into account – but you can’t change the grassroots game.”

The study was not all bad news for footballers however.

Its findings suggested that footballers are less at risk of heart disease and some forms of cancer, while they statistically live an average of three years longer than non-footballers.

Although the study is perhaps the most credible of its kind yet, some flaws have been identified by critics. One of these is that the research only covers the Scottish men’s professional game. Football in other countries and standards, as well as the women’s game could produce different results, some argue.

The paper also does not consider changes in the materials used to make footballs.

Because the study was conducted for players between 1900 - 1976, it only covers those who used the traditional leather ball, which was a lot heavier than its modern counterpart. This may mean more of an impact on the brain, and therefore more damage. The counter argument is that modern balls are lighter and so move faster - potentially increasing the damage they can do to players’ brains.

FA chairman Greg Clarke expressed his views on the study, saying he and the FA welcomed the findings, but that “this is only the start of our understanding”.

The Alzheimer’s Society also commented, with head of research Dr James Pickett saying: “This is the longest and largest study on dementia and football to date and clearly shows retired professional footballers are at increased risk of dementia.

“There have been changes in the game of football over the decades. So if you love kicking a ball around with your friends and family after work, don’t feel put off.”

The study could well lead to drastic changes in the game to better protect players in coming years.

For now further research will only help to keep the issue high on the agenda of footballing bodies and enable parents and grassroots coaches to make more informed choices about heading in future.

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UK AB IF

Change makers gather on key date in neuro-rehab diary The need for further changes to the way brain injuries are handled in the UK was a dominant theme at UKABIF’s 11th annual conference in London recently.

Over 250 delegates gathered at London’s Royal Society of Medicine, with improving the approach to the UK brain injury challenge high on the agenda.

Many of the issues raised reflected the findings of the landmark 2018 paper by acquired brain injury (ABI) all party parliamentary group (APPG), Time for Change.

Diane Playford, professor of neurological rehabilitation at the University of Warwick and consultant in rehabilitation medicine at South Warwickshire Foundation Trust, alongside Ines Kander, PhD student at Warwick University, highlighted the ongoing need to change the community rehabilitation system which is, at best “ineffective”, and at worst “unavailable”.

Professor Playford said: “Commissioning services for neuro-rehab is complex with level 1 commissioned by NHS England, level 2 by the Clinical Commissioning Groups and no clear pathway for level 3. Health professionals work in silos and consequently individuals with ABI fall down the cracks.”

She reiterated the lack of rehabilitation medicine consultants and multidisciplinary team members, as well as poor information provision and inadequate long-term funding.

“We constantly underestimate the number of individuals requiring neuro-rehab in the community, and their inability to navigate the system. People need access to multiple services [in] neuro-rehab for a longer time period and a linkworker to facilitate progress

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through the pathway. We need to do it smarter and differently,” said Professor Playford.

Professor David Menon, head of the division of anaesthesia at the University of Cambridge, and honorary consultant at the Neurosciences Critical Care Unit at Addenbrooke’s Hospital in Cambridge, also highlighted the issue of resource shortages.

“Neurotrauma is, and will remain, the biggest cause of neurodisability, but it continues to be under-resourced and presents many challenges for societal care. Being alive following a brain injury is not enough – we need to know the extent of the injury and the predictable outcomes,” he said.

He explained that there is a burden of mortality over a 10-12 year period post-injury due to the chronic sequelae, and also infection susceptibility which results from immune response modulation. This burden reinforces the need for long-term care, he said.

Discussing the key issues in the Time for Change report, Professor Menon said: “UKABIF and the APPG on ABI have made a huge impact in raising awareness of ABI and driving change. We need to continue to ensure individuals with life-long disability receive the long-term care and support they require.”

The focus on change was repeated by Trevor Sterling, partner at Moore Batch, regarding injury cost recovery. He warned that there has been no review of cost recovery since Major Trauma Centres were introduced, and the extent of the shortfall in injury costs to

the NHS is unknown. Current legislation is outdated and the NHS is underfunded as a consequence, he continued.

“We urgently need new legislation, and as a minimum, a review of the existing legislation which could facilitate increased funding for neuro-rehab,” he said.

Dr Mike Dilley, consultant neuropsychiatrist in neurorehabilitation, brain and mind, addressed the fact that mental health and neuro-rehab are traditionally segregated, but said: “Mental health needs to be integrated in to neurosciences and neuro-rehab”.

He explained that neurological conditions and psychological problems are inextricably linked, and studies have shown that there is an increased mortality after brain injury and mental health problems worsen life expectancy.

Accessing mental services as part of a continuous chain of rehabilitation can be extremely challenging and early access is an essential part of recovery, he warned.

“The system urgently needs to be integrated,” he added.

The importance of supporting young people with an ABI in the education system was highlighted by Drs Emily Bennett and Emily Talbot, consultant clinical psychologists in paediatric neuropsychology at Nottingham Children’s Hospital.

They outlined the need for communication, education, monitoring and adapting in order to support children and young people with an ABI. Education is one of the work streams in the Time for Change report, with emphasis on the need to train teaching professionals about ABI and facilitate change for children and young people with ABI. Meanwhile, a head-on collision in France left Dr Raymond Lynch with debilitating head and spinal injuries. He spoke at the conference of how through determination and the help of a neuropsychologist, he turned his life around.

Now, with the support of his employer Proctor and Gamble (P&G), he consults with the UK government and London-area hospitals on brain injury.

Dr Lynch discussed the 'return to work toolkit' he has developed for P&G employees worldwide with brain injury, as well as their

UK AB IF

managers, peers and families.

In a further experience-based presentation, the Silverlining Brain Injury Charity, founded in 2006, shared the experiences of 23 of its members when they recently went to Namibia in Africa.

The film of the group’s experience was a powerful reminder of the need and importance to invigorate, motivate, nurture and enable individuals with brain injury.

Dr Andrew Bateman, chair of UKABIF, discussed the aspirations of the ABI APPG and highlighted the work being done as a direct result of UKABIF and APPG engagement.

He also encouraged attendees to communicate with their local politician on brain injury issues.

Also the conference, two new UKABIF Chair’s Merit Awards were presented to Susan Pattinson, physiotherapist at STP Therapy Services and Hannah Farrell, clinical specialist physiotherapist in neuro-

traumatology at Queen Elizabeth Hospital Birmingham, in recognition for their work in making change happen in neuro-rehab.

Other awards, sponsored by Cygnet Healthcare, were also presented, including the Stephen McAleese Award for Inspiration, which went to Dr Melanie George, consultant clinical neuropsychologist at Kent and Medway NHS and Social Care Partnership Trust. The award recognised her work in raising awareness of the frontal lobe paradox and educating social workers.

The new Mike Barnes Innovation Award, run in collaboration with the National Institute for Health Research, was awarded to the team behind Goal Manager.

The rehabilitation goal-setting tool is made by clinicians, for clinicians. It combines goal-setting processes, such as the ICF, Goal Attainment Scaling, and the SMART framework, into one streamlined system.

Utilising cloud-based software, members of

multi-disciplinary teams (MDTs) can log into it from remote locations, and update clients’ goals.

A report of goal outcome data can be produced, summarising goal progress and coordinating team discussions.

Goal Manager was developed by Dr Penny Trayner, a paediatric clinical neuropsychologist, who runs an independent neurorehabilitation service in Manchester.

She found that much of the time she wanted to spend working with clients was actually spent setting clinical goals within the MDT, as each of the main processes of goal setting take so long to complete.

By streamlining and automating a lot of the administrative work behind goal setting, she reduced time spent on goals but increased their effectiveness.

Since using the system herself, other clinicians and services have registered their interested, and so Goal Manager was born.

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N EWS

New recruits: Jill Beswick (left) and Jo Glenholmes

Lake District centre opening soon A new brain injury rehab centre which brings together clinical therapies and outdoors activity is now taking referrals.

Calvert Reconnections is an intensive acquired brain injury (ABI) rehab centre which combines traditional interdisciplinary clinical therapies and physical activity in the outdoors.

The residential centre, on the outskirts of Keswick in the Lake District, opens next spring and can accommodate up to 10 participants at any given time.

Centre director Sean Day said: “We are absolutely delighted to have reached the stage where we are now taking referrals.

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“Our focus will be on delivering clinical therapies alongside experienced activity instructors utilising challenging outdoor activities to support individuals in their recovery from brain injury.”

The centre’s rehabilitation assessment identifies the suggested duration of residential placement, a potential start date, any additional support requirements and the cost of the programme.

As part of the process, every individual will be initially assessed at home, with family, by the clinical lead.

Programmes will be developed with the individual based on clinical evidence

and research guidance, while a variety of physical activity, including outdoor adventure, will be available.

Ahead of the opening, Calvert Reconnections has appointed Jill Beswick as clinical lead and Jo Glenholmes as business manager.

Jill qualified as an occupational therapist in 1990 and has worked across the specialities of adult rehabilitation both inpatient and community, always with a passion for neurological rehabilitation. Jo is a registered nurse with a background in neuropsychology and complex case management.

NE W S

New homelessness and brain injury links emerge New data showing the disproportionate amount of homeless people with a traumatic brain injury (TBI) has been published.

It shows that half of all homeless people may have suffered a TBI at some point in their life – either as a consequence or even the cause of their homelessness.

A large study compiling research results from six high-income countries – Australia, Canada, Japan, South Korea, the UK and the US – found that 53 per cent of homeless people had suffered a TBI. This is estimated by the researchers to be 2.3 to four times the rate for the population as a whole.

One in four of the injuries was moderate to severe, according to the study published in the Lancet.

Jehannine Austin, of the British Columbia mental health and substance use services research institute in Canada, where the study was carried out, said: “The relationship between homelessness and TBI could function both ways – TBI could increase the risk of homelessness, and homelessness could increase the risk of TBI. “We need a better understanding of this relationship to address the issue, and to improve outcomes in the homeless and marginally housed population.”

Jesse T Young, a research fellow at the University of Melbourne, Australia, said: “It is becoming clear that TBI can be both a cause and a consequence of homelessness. The functional and socioeconomic consequences associated with TBI can present challenges to finding and retaining housing.”

These latest findings are in line with previous studies which suggest close links between life on the streets and a heightened risk of TBI. Studies in the UK and North America over the last decade have found levels of past TBI experiences among homeless people to generally range between around 45 and 55 per cent.

Research also suggests the vast majority

of TBIs happened before homelessness occurred.

A 2012 study by the Disabilities Trust, for example, found that 48 of the 100 homeless people it questioned in Leeds had experienced a head injury.

Of those, 90 per cent suffered the injury before they became homeless.

The 48 per cent figure was more than double the proportion of head injuries reported by those in a comparator control group of nonhomeless people.

Another Disabilities Trust study, in Glasgow, used hospital records of admissions to assess the city’s homeless population.

It found that the frequency of admission to hospital with head injury among the homeless was five times higher than that of the city’s

general population.

In Toronto in 2004/05, 601 men and 303 women at homeless shelters and meal programmes were surveyed.

Overall, 53 per cent had experienced a TBI, with 12 per cent reporting a moderate or severe TBI. In this study 70 per cent of respondents sustained their injury before they were homeless.

In 2014, researchers at St Michael’s Hospital in Toronto surveyed 111 homeless men and found that 45 per cent of them had suffered at least one TBI in their life, and 87 per cent of those injuries occurred before they were homeless.

Among the general population, TBI rates are estimated to be 12 per cent, according to a 2013 meta-analysis of studies from developed countries.

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N EWS

AI breakthrough could cut brain injury fatalities – study A new study has raised the prospect of artificial intelligence being used in intensive care after severe traumatic brain injury (TBI).

Most severe TBIs are treated in intensive care units (ICUs), but in spite of proper and highquality care, about one in three patients dies, researchers behind the study say.

Their paper aims to use AI to tackle the challenge of accurately monitoring TBI patients in intensive care when they are unconscious.

The Finnish researchers say: “In the ICU, many tens of variables are continuously monitored – such as intracranial pressure, mean arterial pressure and cerebral perfusion pressure – that indirectly give information regarding the condition of the patient.

“However, only one variable, such as intracranial pressure, may yield hundreds of thousands of data points per day. Thus, it is impossible for the human brain to comprehend the resulting millions of daily collected data points from all monitored data.”

They set out to develop an AI-based algorithm that could help to predict the outcome of the individual patient and give objective data regarding the condition and prognosis of the patient and how it changes during treatment.

Rahul Raj, an author of the paper and a professor of experimental neurosurgery, says: “A dynamic prognostic model like this has not been presented before. Although this is a proof-of-concept and it will still take some time before we can implement algorithms like this into daily clinical practice, our study reflects how and into what direction modern intensive care is evolving.”

The algorithms they developed can predict the probability of the patient dying within 30days with accuracy of 80 to 85 per cent.

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They say: “We have developed two separate algorithms. The first is simpler and is based only upon objective monitor data.

"The second algorithm is slightly more complex and includes data regarding the level of consciousness, measured by the widely used Glasgow Coma Scale score.

“As expected, the accuracy of the more complex algorithm is slightly better than for the simpler algorithm.

"Still, the accuracy of both algorithms is

surprisingly good, considering that the simpler model is based upon only three main variables and the more complex upon five main variables.”

The algorithms are yet to be validated in national and international external datasets, however.

The project was a collaboration between three Finnish university hospitals: Helsinki University Hospital, Kuopio University Hospital and Turku University Hospital.

NE W S

Nerve drug implicated in spinal recoveries A common drug could help to restore limb function after spinal cord injury, scientists believe.

Long-term treatment with gabapentin, a commonly prescribed drug for nerve pain, could help to restore upper limb function after a spinal cord injury, new research in mice suggests.

Mice treated with gabapentin regained roughly 60 per cent of forelimb function in a skilled walking test, compared to restoration of approximately 30 per cent of forelimb function in mice that received a placebo.

The drug blocks activity of a protein that has

a key role in the growth process of axons, the long, slender extensions of nerve cell bodies that transmit messages.

The protein stops axon growth at times when synapses form, allowing transmission of information to another nerve cell.

The research showed that gabapentin blocks the protein from putting on its brakes, which effectively allowed axons to grow longer after injury.

"There is some spontaneous recovery in untreated mice, but it's never complete. The treated mice still have deficits, but they are significantly better," said senior author Andrea

Tedeschi, assistant professor of neuroscience at The Ohio State University.

"This research has translational implications because the drug is clinically approved and already prescribed to patients," he said.

"I think there's enough evidence here to reconsider how we use this drug in the clinic.

The implication of our finding may also impact other neurological conditions such as brain injury and stroke."

The regained function in mice occurred after four months of treatment - the equivalent of about nine years in adult humans.

"We really have to consider that rebuilding neuronal circuits, especially in an adult central nervous system, takes time. But it can happen," said Wenjing Sun, research assistant professor of neuroscience at Ohio State and first author of the publication.

The study is published in the Journal of Clinical Investigation.

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N EWS

Emerging Parkinson’s treatment “safe and effective�

Applying pulses of focused ultrasound to the brain is safe and effective for reducing tremors and improving quality of life in people with essential tremor (ET) or Parkinson's disease (PD) tremor, a study shows.

Tremors are characteristic of movement disorders like ET and PD, two progressive conditions that affect millions of people worldwide.

Previous treatment options for reducing them in patients who have not responded to medical therapy include deep brain stimulation, a surgical procedure that involves implanting a small electrode in the brain connected to a pulse generator that is implanted in the chest like a pacemaker.

A more recently-available option is magnetic resonance-guided focused ultrasound (MRgFUS) thalamotomy, an incisionless interventional radiology procedure. It involves focused beams of sound energy being used to heat and destroy a small part of a structure in the brain called the thalamus.

The procedure provides relief to the opposite side of the body, meaning that treatment to the right side of the brain would relieve tremors on the left side of the body, and vice versa.

As a minimally invasive approach, focused ultrasound has advantages over deep brain stimulation, including a reduced risk of complications from bleeding and infections, according to study lead author Federico Bruno, a radiologist from the University of L'Aquila in Italy.

"Another advantage is the immediate effect this treatment provides, unlike deep brain stimulation which requires a break-in period for the electrostimulation," he says.

"Additionally, treatment with MRgFUS requires shorter hospitalisation and is a fairly well-tolerated procedure even by more fragile patients."

For the new study, Dr. Bruno and colleagues

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enrolled 39 patients, with an average age of 64.5 years, with disabling tremors that had not responded to treatment.

The people in the study group, including 18 with ET and 21 with PD, had experienced symptoms for an average of more than 10 years.

The researchers evaluated the patients for tremor severity and quality of life before MRgFUS thalamotomy, immediately after treatment and over the course of the ensuing year.

They found that 37 of 39 patients, or 95 per cent, had substantial and immediate reduction of tremor. These reductions in tremor were sustained in follow-up evaluations. Quality of life evaluation showed substantial improvement in both the ET and PD groups.

"The study we present reports our experience of over a year in the treatment of tremor by thalamotomy with focused ultrasound," Dr. Bruno says.

"It is worth noting that we had a high number of patients with Parkinson's disease in our series, compared to previously published data, where the procedure was used mainly in the

treatment of essential tremor patients."

Currently, MRgFUS thalamotomy is only available at a limited number of sites worldwide, but may become more widespread as research findings supporting its use are published. Improvements in neuroimaging techniques that allow for greater precision and detail in planning, implementation and monitoring over time of the treatment could also expand its availability.

"The clinical application of this technique for neurological diseases is an absolute novelty - the clinical use was approved by the FDA less than three years ago. Few patients know of this treatment option so far, and there are not many specialised centres equipped with the required technology." Future research in this area includes the possibility of treating both sides of the thalamus. MRgFUS is also being explored in areas beyond movement disorders, Dr. Bruno says.

Several preclinical studies and clinical trials are looking at the technique for the treatment of other neurological conditions like neuropathic pain, epilepsy and obsessivecompulsive disorders, as well as for the treatment of brain tumours.

Q UNOT E Sponsored feature

Qunote unveils eagerly-anticipated clinical-notes software upgrade Available now, the popular case management system has been completely redesigned and redeveloped to meet the opportunities and challenges facing clinicians today.

Qunote, one of the UK’s leading providers of clinical software to the case management, therapy and rehabilitation industries, has launched its highlyanticipated Qunote 3.0 platform.

Qunote is a cloud-based case management system designed specifically to streamline the day-to-day tasks of private practice clinicians. It’s comprehensive range of features and extensive customisation options make it the perfect solution for organisations of all sizes. From client profiles, clinical notes, time recording and billing, to documentation, reporting and much more besides, Qunote provides everything clinical organisations need in one secure, beautifully designed and user friendly platform.

The latest version of the platform, Qunote 3.0, has been completely rebuilt from the ground-up to be faster, more intuitive and more secure. It has also been redesigned to be mobile and tablet friendly, meaning the platform is now as easy to use on-the-go as it is in the office. Qunote 3.0 incorporates upgrades to many of the platform's much-loved features, as well as introducing several sought-after new features. This includes a new task management facility, individual appointment diaries for clinicians and clients, and a major new HR module allowing organisations to maintain comprehensive HR records for employees, manage annual leave, absence, training and documentation, and report on key HR metrics, such as DBS and training expiry dates.

Qunote provides everything clinical organisations need in one secure, beautifully designed and user friendly platform

With data security and compliance becoming increasingly important to organisations within the healthcare sector, Qunote 3.0 also builds upon the considerable security controls of its predecessor, helping its users to fulfil their obligations under the GDPR and UK Data Protection Act. User access to system functionality and client data are fully manageable through permissions, and administrators are now able to access full audit logs of user activity.

The platform is hosted on an enterprise-level server in a state of the art UK-based data centre, with a daily back-up and data encryption at rest and in transit.

Qunote continues to be certified to ISO27001, the internationally recognised standard for information security and data governance.

Originally launched 10 years ago, the Qunote platform has been developed with support of some of the UK’s leading case management and rehabilitation firms. It has grown rapidly since then, having been enthusiastically embraced by users within a range of industries. Its clients now include companies specialising in case management, occupational therapy, physiotherapy, vocational rehabilitation, speech and language therapy, psychotherapy, and drug and alcohol rehabilitation. As web-technologies and regulations continue to change, Qunote has recognised the need to evolve the system to meet the challenges and opportunities facing clinicians, and Qunote 3.0 is the result of a several years redevelopment work and extensive consultation with users. Talking about the launch, Qunote’s Director Roger Watersmith said “As champions of efficiency, best practice and profitability within the case management, care and rehabilitation industries, our mission has always been to bring our clients the latest range of smart-working tools to strengthen their businesses and improve client outcomes. We are therefore extremely proud to launch Qunote 3.0, the most sophisticated case management system currently on the market. We know users are going love the slick new interface, mobile accessibility, and exciting range of new features.”

For more information about Qunote, visit www.qunote. com, email info@qunote.com or call 01303 863 816.

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N EWS

Does cricket have a concussion problem?

Australian cricketer Steve Smith’s head injury in the summer added fuel to the debate on how the sport is handling concussion. Ethan Sisterson reports.

With bowlers throwing at speeds of 100mph+, professional cricket is not without it dangers.

A study by La Trobe University in Melbourne suggests that a head impact occurs every 2,000 balls on average at men's elite level.

It also shows there is a diagnosed concussion every 9,000 balls, a higher rate than previously estimated.

Meanwhile, since the 2015 death of Australian Cricketer Phillip Hughes - who ruptured an artery after being struck in the neck by a ball - there has been a worldwide debate over the safety of cricket.

This was reignited when Australian Steve Smith suffered concussion in the 2019 Ashes, having been hit by a 92mph ball from England’s Jofra Archer.

He initially played on but the next day withdrew from the Australia squad due to a delayed concussion.

Thankfully, Smith was able to recover, but the decision to let him play on was condemned by many, including the charity Headway.

Short of matching its stance on boxing - which it believes should be banned outright - Headway said that the incident needed to be a “wake-up call” for the sport. It urged ruling bodies to seize the initiative to make changes to better protect their players.

Chief executive Peter McCabe said: “There needs to be a cultural change in the way cricket responds to head injuries. That starts with players and medical teams at the elite level setting a good example for the grassroots to follow.

“The time has come for the International Cricket

As long as they were still standing up and could hold a bat, they would just bat on

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Council to introduce a more robust protocol which sets a specific period that players are required to rest following a concussion.

“Likewise, we feel that neck/stem guards should be mandatory.”

The stem guard was designed by helmet manufacturer Masuri in response to Hughes’ death. Rather than being compulsory, the helmet accessory is used irregularly at international level.

Smith himself chose to wear one after his concussive incident.

In fact, under International Cricket Council (ICC) rules, even the helmet is not mandatory for batsman, despite the clear risks they face.

Durham County Cricket Club physiotherapist Nigel Kent describes this position from the ICC as “unbelievable”, although he does see positives elsewhere in how cricket is addressing the risk of concussion.

“I don't think there is a problem [with concussion in cricket] as such. Yes, we do get players with concussion. But I think we deal with it far better now than we ever have done.

“If you had asked me this question five or six years ago, I would have said yes there is a problem. If somebody got hit on the head, as long as they were still standing up and could hold a bat, they would just bat on.

“It was very player-led and if they felt well enough to continue, they were allowed to.

“I think now it's been taken out of the players’ hands and is much more physio-led. If we say they have to come off, they do so.”

Kent is encouraged by the England and Wales Cricket Board’s (ECB) approach to concussion through its head injury protocols.

NE W S

The ECB has a four-step procedure implemented at every level when recovering from a head injury.

They are: recognise the concussion, remove the player from the game, recover and return.

It also has a six-day waiting period for any player diagnosed with concussion, meaning they cannot return to any form of cricket until this period is over.

Kent, who also works in football, sees notable differences in attitude and application between cricket and similar sports.

“I think cricket’s attitude is that ‘it's better to be safe than sorry’.

"If there is a doubt that a player has been hit and there may be a problem, we just take the player straight off.

“I don't think there's any ‘let’s see how you go for five

or ten minutes’.

"I think if we feel there is a problem, we just take the player off.

“You see sometimes players in other sports get cleaned out, they look like they are out of it but they still play on. Cricket is different from that since you play a four or five-day game and therefore there's a lot more time [for recovery]. There's not as much time pressure when you're assessing a player on the pitch, compared to maybe rugby or football.”

While there is clearly work to be done in the game, awareness of concussion in cricket is growing and the approach to the issue is seemingly improving.

Find out how other sports are handling concussion online at www.nrtimes.co.uk.

NRTIMES 19

PATH WAY P R OFI L E Sponsored feature

Introducing the UK's newest neuropsychiatric care service February 2020 sees the opening of a new specialist hospital for men with challenging behaviour caused by brain injuries and neurological conditions.

Andrew Mernin meets Cygnet Health Care’s hospital manager Jackie Ewington to find out more about Cygnet Pindar House in Yorkshire.

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Cygnet Pindar House, in Barnsley, will have 22 beds for men with neurological conditions and acquired brain injuries.

It is specifically for those cases which result in challenging behaviour requiring professional support in an appropriate setting. The facility is the latest addition to Cygnet Health Care’s portfolio and has been purpose built to provide a clinically-led, evidence-based neuropsychiatric pathway for service users.

With the aim of minimising challenging

PATHWAY PRO FIL E Sponsored feature

behaviour while encouraging individuals to maximise their independence, the unit represents a significant step forward in increasing national provision in this highly specialist area of care.

The service - which adds to Cygnet’s existing specialist facilities in Bristol, Birmingham, Darlington and two in Nottingham - is now taking referrals from both the NHS and other private units nationally.

Hospital manager, Jackie Ewington (pictured, right), is a registered mental health nurse and holds degrees in health and social care as well as violence reduction.

She was previously the Management of Violence and Aggression Training Manager at Rampton Secure Hospital, as well as being professional lead for Nottingham NHS Trust.

Under her leadership, the hospital will offer a bespoke approach to each service user, addressing behaviours and helping them to move forward.

“In working with individuals with more challenging behaviour, we need to understand and respond to their individual needs. The key to avoiding conflict is getting to know them and anything that might trigger off their anxiety or aggression, and having proactive and active plans in place to reduce the risks of the behaviour escalating,” says Jackie.

“From a staff perspective, in this environment it’s important to find ways of avoiding physical, hands-on restraint. It’s about knowing your own body language and communication skills, being able to verbally de-escalate and understanding when to withdraw or use distraction techniques. We'll be going out into the community and doing lots of activities. We have a carefully designed rehabilitation model which is formulated to maximise the potential and ability of each service user. Our outside space will be used to the maximum to get the men out and about moving, active and engaged. Generally, if individuals are a part of doing something they enjoy, they're less likely to become violent and aggressive. Everything is about moving forward and addressing behaviours, while offering specialised support throughout their journey.”

Jackie has played a central role in preparation

The key to avoiding conflict is getting to know them and anything that might trigger off their anxiety or aggression

for the opening of Cygnet Pindar House since joining the care group last year, and is involved in all aspects, from recruitment to interior design. The service requires a team of neuropsychiatrists, psychologists, occupational therapists, speech and language therapists, nurses and therapy coordinators, alongside housekeepers and kitchen staff.

“A massive part of rehabilitation is to occupy individuals by finding out what they like to do, and making sure you're providing those activities. We’ve also recruited physiotherapists as there will be service users with movement difficulties who may require physical rehabilitation specialised to them."

Dietary needs are also an important consideration, says Jackie.

“We are training the kitchen staff in the provision and standards of meals for individuals with swallowing problems, for example.”

Build and design has also been influenced by Jackie, who has ensured attention to detail in creating a facility fine-tuned for the needs of the individuals it will be accommodating.

“As well as the style and the layout of the hospital, I've had a lot of involvement in the finishes and in specialised things for this type of environment, such as making sure that flooring flows through the building. If someone has a neurological deficit, if you've got doorways where the colour changes or there's a strip on the floor for example, they may be unsure how to navigate it.

"Also, it’s important to make sure doorframes can be easily identified and stand out.

“I've been working closely with the designer to make sure we have the most appropriate spec possible for our service users’ needs and in terms of managing their cognitive issues.”

As the facility prepares to open its doors, Cygnet is currently recruiting nurses.

Although staffing is now well on track, Jackie admits she has experienced the skills shortage currently impacting on the wider healthcare sector.

“The challenge really has been with qualified nurses. We’ve been advertising for mental health, learning disability and general nurses, so that we cover all bases with the type of service users we're going to be caring for.

“Thankfully we now have most of the staff team in place for Cygnet Pindar House and are looking forward to opening and to welcoming our first service users in the coming months.”

For more information and referrals visit www.cygnethealth.co.uk.

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MND

THE WHOLE PROCESS WAS SHOCKING Families affected by motor neurone disease are fighting a losing battle for accessible housing and home alterations, as Ethan Sisterson reports.

The progression of motor neurone disease can be cruelly fast. The last thing families affected by it need, then, are delays in getting the vital support they are entitled to.

But in households across the UK, red tape and the stuttering mechanics of local councils are causing needless hold ups in essential home alterations.

Ultimately, people with the disease are becoming trapped in unsuitable housing conditions, a recent study has found.

A core problem highlighted in the report is the patchy nature of how Disabled Facilities Grants (DFGs) are delivered to people with MND. DGFs enable various accessibility measures such as ramps, wider doorways, wet rooms – or any other change that makes home life possible as the disease’s influence on mobility grows.

It is means tested and available in England, Wales and Northern Ireland.

The findings suggest that many people with MND are struggling to access them at all, or at least within a reasonable time frame.

The end result is a litany of horror stories in which

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patients and loved ones are being let down by a system supposedly designed to help them.

One personal account in the Motor Neurone Disease (MND) Association’s report details how workers turned up to adapt doorways for a wheelchair on the day that the individual died – such had been the delays to the process.

Another respondent in the charity’s Act to Adapt report says: “We applied for financial aid but were turned down for any assistance as we both worked.

“We were told to reapply when our circumstances changed. As far as we were concerned they had already changed dramatically and we didn’t have time to wait!

Joe’s work colleagues, family and friends began raising money to have our house adapted.

“As it turned out, it really was too late for Joe. Seven months after diagnosis Joe died. The whole process was shocking to me. I couldn’t believe that we were basically told we would have to do it ourselves.”

Among similarly bleak anecdotes, one family member notes: “The ramp and wheelchair came too late and because of length of time for the grant for the wet room we had to make do with a poor version that flooded every time we used it.”

Another says: “MND is a disease where you are always chasing your tail. One day you are ok … the next you have lost a personal faculty. Property adaptations for people [with] MND should be impressively proactive – more in expectation than reaction.”

Around 4,500 people in the UK have MND. Statistically, a third will die within 12 months of diagnosis and more than half within two years.

A speedy DFG outcome is clearly required against such time frames but, as Alex Massey, policy manager for the MND Association explains, it is not always achieved.

“The main issue our report brings out is the length of time it takes to access support for people who need to adapt their home. In many cases, the timelines are simply far too long.

“MND is a very rapidly progressing condition. When you have a situation where the application for a grant takes six months to process, that’s totally inappropriate.”

Costs keeping families trapped The charity surveyed 850 people, including those living with MND, carers, health and social care professionals and the charity’s own volunteers.

Of the 387 respondents affected by MND as a patient, carer or loved one, 96 per cent cited the cost of adaptations as a major barrier to adapting their home.

A further 39 per cent blamed a lack of financial help for adaptations or house moves.

A fifth said the length of time it took to hear whether

M ND

they were eligible for grants such as the DFG was a problem and 23 per cent pointed to a lack of support from local services.

Professionals were also asked what they felt were the biggest barriers people living with and affected by MND faced when securing accessible housing.

Of 92 respondents, 87 per cent highlighted the emotional burden of having to organise adaptations or move home.

The MND Association says its staff strongly agree with this, and it was a theme at its recent “engagement events”.

Eighty three per cent indicated that a lack of available accessible homes was a barrier, and three quarters chose the length of time waiting for an accessible home.

A creaking system Massey also points to the use of an outdated means test which potentially leads to individuals being unfairly rejected for DFGs. To qualify for a DFG, a person must demonstrate that the work is ‘necessary and appropriate’ to meet their needs, including moving around and getting in and out of their property, and that the work is ‘reasonable and practicable’.

There is also a ‘test of resources’, which is based on household income and savings.

Certain benefits, such as Employment and Support Allowance and Universal Credit, mean that a person will be passported through the means test.

Massey says: “The means tests look at income and assets, but what it doesn’t look at is the real cost of living and coping with a highly disabling progressive condition like MND. “The cost of care and support, additional costs for things like energy and transport all add up, so people find they are hit with significant financial costs which can be difficult to manage.”

The means tests look at income and assets, but what it doesn’t look at is the real cost of living

This was echoed in the report, with a consensus of people stating that the means test for DFGs is unfair, particularly in terms of both the low savings limit and the fact that it does not consider real outgoings, which can be substantial for someone with MND. MND Costs – a separate MND Association study and campaign – found that the extra regular and enhanced costs of managing the disease equates to £9,645 per year, not including one-off costs for equipment and adaptations.

“A lack of flexibility, or realistic consideration of the loss of income working aged people with MND will often face, can also result in both delays and financial hardship” says the MND Association in its latest report.

“Problems are also caused by the fact that the test of resources is based on household, rather than individual, income,” it continues.

Darren’s story Darren Buckley (pictured) is among those with MND that was turned down for a DFG, having been diagnosed in August 2018.

“When I applied for the DFG, a woman from the council came to see me at my home.

“The first thing she said which made me feel optimistic was that ‘we’ve got half a million pounds of funds available this tax year for adaptations’. I then went through all the questions she said it would take a couple of days to be fed into the computer and it would be a ‘yes’ or a ‘no’. I thought that sounded reasonable.

“Unfortunately I didn’t get the outcome until a week to 10 days later when I got a phone call – no written information – from the same officer.

“She said that the computer had basically said I was able to contribute £140,000 towards adaptations in the house so I was not entitled to a penny for major adaptations work.” Darren immediately requested written confirmation of his DFG rejection to support his case for charitable funds.

“It took three weeks for them to reply with a written note to say my DFG was not successful. So that wasn’t a good start.” Darren contacted local builders and architects and used his medical retirement pension fund to adapt his home – with some additional charitable support.

“I was lucky to have that, I know some people don’t. But then after I had been told I couldn’t have anything from the DFG, I was then informed I could have minor works done worth up to £1000 – for things like a stair rail or shower seat.

“I was hoping to get my wet room up to standard and asked whether they could fund a specialist toilet or a ceiling hoist for my future development.

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MND

“The OT was then told by their manager that there was no further funding from the council. I heard nothing from my OT after that until recently when my bedroom was being completed I was asking about a hospital profile bed.

“I went back to the OT team and they told me my case was closed because I was no longer a priority.”

In the end, his GP stepped in and helped him to secure the bed he needed without the council’s input.

“The only support I got from the council was before I applied for the DFG when they put in a stair rail and shower-board when I was still able to walk. From an OT point of view with my local council, the word I would use is shocking.”

Overall, Darren found the DFG process frustrating at a time when he was adjusting to the realities of living with a terminal condition.

“The council came out for the DFG and said ‘oh great you’ve got a garage, it’ll be good for the future, you’ll be able to have ground floor living’. Then said, ‘no you can’t have anything’. That was a smack in the teeth but I thought I had to go through them because I pay my council tax and should go through them for my social needs.

“The community nurse said to me last week, ‘you shouldn’t be paying for all this’ but I’ve got no choice when I keep getting told that there’s no funding.”

Rising costs The MND Association’s report shows that the average value of a DFG rose from just over £7,000 in 2009/10 to nearly £9,000 in 2016/17, reflecting increases in building costs. There is considerable regional variation, however. In London, only a third cost less than £5,000, whereas in most other areas between a half and two thirds are under £5,000.

The average cost of the two most common adaptations is £5,000, for showers, and between £2,400 and £4,500 for stairlifts. The impact of such changes can be priceless, however. “I have had a week of using the facilities,” says Darren of his adaptations.

“It’s like a new lease of life. It has really made me feel like myself, I can do these things again.

I went back to the OT team and they told me my case was closed because I was no longer a priority

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“I’m able to live and dress independently. This morning it took me about 55 minutes to an hour to get ready, but I have done it myself, so I still feel good about it.”

On the importance of accessible housing, the report says: “Being trapped in inaccessible housing is linked to a range of negative impacts on physical and mental health, resulting from factors such as isolation and loneliness, lack of physical activity, disengagement from family and community, and unsafe environments contributing to accidents such as falls.

“For disabled people and people with health conditions, homes need to be built around their needs.”

The DFG scheme is 30 years old this year and has, of course, helped many people to tailor their homes to their needs. But the MND Association’s data suggests accessing it is something of a post code lottery.

Responding to freedom of information requests, 26 English councils said they spent less than 50 per cent of their DFG budget in 2016/17, while 80 spent 100 per cent or even more.

The funding allocation process for councils is not transparent, says the report, so ascertaining reasons for these discrepancies has proven challenging.

Recommendations The Act to Adapt report is calling for a number of changes at local and national government levels in how the scheme is delivered – and more broadly – to improve swift access to suitable housing for people with MND. Massey says: “We really want to encourage local authorities to build on some of the best practice that exists out there so that we start to see good practice spread more widely across the country.

“We would also like to see them all keeping an accessible housing register; because it’s not just about existing homes, but also about supporting people to find alternative accommodation.

“Also, it can be very difficult to simply know what options are out there in terms of which properties are accessible, which is not something you can usually find out from your local estate agent.

“Accessible housing is a fundamental right that needs to be respected and delivered.

“I think it’s pretty well accepted now that there are strong links between appropriate accessible housing and health and wellbeing outcomes.”

The recommendations in the report include the introduction of a fast-track process for adaptations under £5,000 to be implemented by all authorities responsible for DFGs. The report also urges discretionary support in certain circumstances, for example for people with a terminal illness.

Sharing of good practice in terms of providing advice, support and information is also encouraged.

Life after traumatic injury can be challenging Blesma is here for all serving and ex-Service men and women who have experienced loss of limb, use of limbs, hearing, sight or speech, either during or after Service

Get in touch to find out how we can support you and your family Tel: 020 8548 7080 Email: membersupport@blesma.org Find out more: www.blesma.org

NRTIMES 25

CASE MANAGEMENT

Are you playing your part in the pursuit of vital research?

Experienced brain injury case manager Philippa FelthamWhite shares her experience and thoughts on the importance of engaging in research.

The British Association of Brain Injury and Complex Case Managers (BABICM) research group is encouraging all case managers to make the leap back into research.

Engaging in research and staying up to date in evidence-based practice is fundamental to BABICM’s competency framework, which is required for effective practice for all case managers.

This ensures case managers continue to enhance service user’s outcomes and experiences.

My research journey started by identifying a gap in knowledge, and a lack of research in a specific topic and from this I was able to form a broad research question. I had always anticipated completing a PhD, post Master’s, and had an “if not now, then when?” moment. I approached the research school at my local university for their advice and after an interview, they accepted me

Some professionals can apply for funding through their professional body for research grants.

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onto their MPhil/PhD research programme. The next step was to shape the methodologies (which I found quite daunting), and so I ended up completing a Post Graduate Certificate in Research Studies at the University of Worcester. Post Graduate Certificates can be undertaken full time or part time, with modules spread out over one or two years, sometimes at weekends, ensuring professionals in full time employment can access them (albeit with multiple cups of coffee to hand). I would highly recommend either this option or completing a Masters in Research (MRes) degree. An MRes degree can be undertaken as either a one-year full time or two years part time taught post graduate degree, during which you will complete a large research project. I recommend contacting any university’s research school or look out for Post Graduate research conferences which may help to shape your research ideas. Some professionals can apply for funding through their professional body for research grants. In addition, healthcare professionals who work within the NHS can also access internships/ bridging awards, and NIHR/HEE ICA Fellowships.

CA S E M ANAG E M E NT

For more information on BABICM visit www.babicm. org/research or email secretary@babicm.org.

Further details can be found at www.nihr.ac.uk.

The annual BABICM conference has a ‘research slot’ alongside an opportunity to present a poster of completed research or a single case study. Case studies provide a wealth of qualitative data and are a good way to approach research from a clinical standpoint. Linking in with professionals within your organisation or peer group and looking at research development in your area of practice can also be an excellent way of shaping initial ideas.

Research remains at the heart of what we do as professionals, benefitting clients and improving better outcomes for all. BABICM's research group is happy to talk further with anyone interested in beginning a research journey and can provide a research signposting service for interested members. Equally we would love to see any poster presentations at the next BABICM conference on the 10 and 11 June 2020 in Birmingham.

Philippa Feltham-White is an occupational therapist and BABICM Research group member.

Research remains at the heart of what we do as professionals, benefitting clients and improving better outcomes for all

NRTIMES 27

AC RM

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AC RM

STATE OF THE REHAB NATION The driving force of rehabilitation research in America has big plans to speed treatment development and improve skills, its outgoing president Dr Deborah Backus tells Andrew Mernin.

Deborah Backus is navigating rush hour traffic when she takes a cross-Atlantic call from NR Times. She’s understandably busy. The organisation she oversees is about to host the biggest rehab research event on the planet. But president of the American Congress of Rehabilitation Medicine (ACRM ) is just one hat she wears. Deborah is also director of MS Research at the Shepherd Center in Atlanta, Georgia. This is among the top 10 rehab hospitals in America, specialising in brain and spinal injury and neuromuscular conditions.

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AC RM

A few days after our conversation, the end of her ACRM presidency will be officially marked on stage in Chicago at the organisation’s annual congress – the global flagship event in rehab research.

She’ll remain deeply embroiled in the work of the group, however. The ACRM aims to improve the lives of people with disabling conditions, by providing researchers with the tools they need to carry out rehabilitation studies.

Part of its remit is to seek out more funding for such projects.

“We work with funders, on a national level and in foundations in different areas, to get more funding for research. This is definitely a challenge as we move forward and I suspect its is all around the world too.”

Another crucial role of the organisation is to aid the translation of evidence into clinical practice.

“We work to disseminate our findings and provide a forum for researchers to help inform clinicians and help them to translate that evidence into practice.

“Even if we do that at our very best, we're still a little bit at the mercy of the payers (which fund rehabilitation in the US). The challenge is to figure out the best way not only to get the information to the clinicians treating patients, but also to the people making decisions about reimbursement and which services are paid for.”

Deborah believes the progression of evidence from the lab into the lives of rehabilitation patients is “improving, but we still have a way to go”.

“We’re still learning the best, most meaningful way to translate evidence into practice. Partly we do this through our annual conference, but we are also launching a training institute to reach those frontline clinicians and educate them about the evidence-based practices.”

Other such measures include sharing research findings in webinars, on social media and in the ACRM’s two

We really want to develop future leaders in rehab and rehab research

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published journals.

“In our the Archives of Physical Medicine and Rehabilitation we also have information and education pages which present information on evidence based practice in a meaningful way for patients, and clinicians to give to their patients.

“We're really trying to use every forum to help get the evidence out there.”

The ACRM lobbies politicians and other influencers to further the cause of rehabilitation research and rehabilitation generally.

“We have a policy committee which tries to talk to policymakers in Washington DC. We also work with clinical and patient advocacy groups to help them understand how to fight their case based on evidence.

We will advocate for different bills - legislature that impacts not only rehabilitation research, but rehabilitation care if it’s evidence based.

“We do have influence but it's a marathon, not a sprint and I think we have to continue trying to keep those conversations open and discussions moving forward.

“We definitely have had people at the National Institutes of Health who are very interested in helping to develop the rehabilitation research agenda and supporting the work that we're doing. Every time we get somebody in our corner, we try to use it to take a step forward.”

Is encouraging consistency of rehab services across the US another of ACRM’s biggest challenges; considering the sheer size of a country which is home to over 6,200 hospitals?

“Our evidence and practice committee is very rigorous in evaluating the research and then helping to develop guidelines to influence tactics. So in that way, we're trying to improve the consistency across America, but it takes a lot of manpower and resources to develop those guidelines. We're supporting research and then helping it to be carried out in the most rigorous way – and then taking that information and evaluating it to help to develop guidelines.”

AC RM

Of the rehab research currently underway in the US, which areas particularly excite Deborah?

Unsurprisingly given her specialism at the Shepherd Center, she says: “MS rehab and research has advanced tremendously in terms of disease modifying therapies.

There's now an evolving awareness that people with MS can be healthier and more functional.

“In my mind, it's very meaningful, because these are people that we haven't previously been able to help live their healthiest lives.

“There’s also a lot of work going on with predictive analytics that I think is very exciting. A lot of people are focused on establishing large data sets and developing predictive analytics, trying to figure out exactly who's going to benefit from which kind of care. Lots of important work is going on trying to advance precision rehab; asking how can we do a better job deciding what to do for a given person based on how they present with their MS, stroke or spinal cord injury, for example. What can we offer them?

“I think we're starting to see that we need to break down the silos between the different diagnostic groups and to think about each individual based on how they present with impairments.”

Deborah herself is involved in a multisite trial testing the evidence-based guidelines for exercise in MS. “We’re evaluating delivery of these guidelines combining social, cognitive theory and behavioural intervention – comparing delivery in the home via tele-rehab and in a facility.

“It’s going to be the largest exercise trial of its kind and is very exciting because every day we're hearing from people just how meaningful participating in this exercise intervention has been for them.”

The study’s findings are likely to be published in 2021.

In the meantime, there is much work to be done at the ACRM, including in growing its global network.

“We’re really keen to expand our reach. We’re currently working on developing partnerships with similar

We need to break down the silos between different diagnostic groups and think about each individual

minded organisations around the world. I think we could probably do a better job in terms of global collaboration.

One of the limitations, whether it's with Canada, the UK or other places in the world, is that the reimbursement structure and the way services are paid for here is a little different.

“But there is great collaborative work going on to address problems. In the MS world, for example, there are people in America, Ireland, the UK and Canada all working together. There’s definitely that type of collaboration happening in spinal cord too."

Another focus area for the ACRM is in developing leadership skills in rehabilitation.

“We really want to develop future leaders in rehab research and rehab medicine. A lot of our most prominent and influential people are either in retirement or getting close to it. There is a strong need to develop not only our early career researchers but also our mid-career ones, helping them to develop into leaders in the field. We already have a special early career training course that really has had a huge impact already. So now we are doing the same scheme for mid and late career people - those ones who get to the stage of saying, ‘Ok I’ve established my research agenda and I'm doing fairly well. Now what can I contribute to the field and what else can I do to advance myself?”

“Policymakers come in and work with them, helping them to do a better job of packaging their research to get the funding they need. It's just a unique course and very powerful. Researchers don’t get a lot of opportunities to develop their skills as leaders. There’s a lot of education out there but it’s not packaged for the researcher and a language of a researcher and the way that they think.

“So we have an opportunity to develop people as leaders, and not just managers. It’s not just about how you do the day-to-day operations, but how do you think in a visionary way? How can you package that research to influence the field and what mechanisms can you use to do that?

"That's what we're trying to do because we need those future leaders.”

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CASE STUDY

SUMMERSAULTING OUT OF THE COMFORT ZONE Staff at St Neots, a neuro-rehab centre on the border of Cambridgeshire and Bedfordshire, were looking for ways to expand their patient rehab opportunities when they had a gold standard idea. As senior physiotherapist Penny Jarrold reports, three clients were given access to Olympic facilities - and the results were surprisingly good.

Each session had a loose structure, and allowed each patient to use the equipment to tailor the activities to test and progress mobility, balance, co-ordination and stamina

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We all know that taking exercise has both physical and mental health benefits.

Staying active is easy for some, and not so easy for others. The current campaign run by the Chartered Society of Physiotherapy is “Love activity, Hate exercise�.

Taking this principle we try to prompt and increase where possible, general activity for all our patients at our St Neots neurological service. For some this may be encouraging them to be more involved on the ward generally, in group activities or on outings.

For the more physically able patients, we were looking for a fun way to engage and push them outside their comfort zone to see if this could potentially improve their function or mobility.

The team at St Neots try to use the local community in the provision of meaningful activity, as this maintains a normalisation to activities and allows the person to undertake these within a natural environment.

We are lucky to have locally the Huntingdon Gymnastics Club in close proximity to the site.

CAS E S TUDY

Overall, we were aiming to encourage increased activity to help preserve physical function for patients who have a neurological condition, and to maximise and preserve independence and function for as long as possible

This is the gymnasium used to train the British gymnasts for the Olympics.

Three patients from the St Neots service joined the club’s disability programme which ran for 10 weeks and they attended one session per week.

Each session had a loose structure, and allowed each patient to use the equipment to tailor the activities to test and progress mobility, balance, co-ordination and stamina.

The programme also offered our patients the opportunity to use their soft skills such as turn-taking and socialising.

We were unsure how the patients would respond to the hour long session, the set up of the environment and also the consistency of weekly attendance.

The “Timed up and go test” was used as a simple outcome measure and mobility benchmark as it has been shown to be reliable in patients with Parkinson’s disease and other neurological conditions. However, the main focus of the sessions was to enable activity and fun.

Susan and Richard, both of whom have a

diagnosis of Huntington’s Disease, and a gentleman who sustained a brain injury in 1996, all agreed to trial the programme.

All three patients were independently mobile on the ward and accessed the community for various trips.

The programme was designed to drive these patients past their normal activities in a safe environment, allowing them freedom of movement without concern over injury and with a focus on fun not fitness, hopefully with the side-effect of improving their mobility.

Over the 10 weeks, the patients were involved in: • Balancing on soft surfaces, balancing at height, climbing over uneven surfaces • Parachute group activities, selective movement and balance games • Ball throwing, catching, target throwing • Trampolining, jumping into the sponge pit • Sponge pit commando crawling.

Repeating the Timed Up and Go test after just six weeks showed the following improvements (see table below).

Benchmark

After 6 weeks

Susan

11.27 secs

7.05 secs

Richard

10.88 secs

7.90 secs

3rd Patient

11.46 secs

10.87 secs (>13.5 sec indicative of high risk of falls, <13.5 sec indicative of moderate/low/no risk of falls)

NRTIMES 33

CASE STUDY

But perhaps more importantly than the physical improvements in mobility are the subjective benefits, as demonstrated by the following: Richard: “I just feel better...I’m more confident...I’ve never done a front summersault before, it’s great! Can we keep going?”

Susan: “I feel more active and confident I can do things.

“It’s important to keep going, I can try things I didn’t think I could do.”

The third patient said: “I feel knackered afterwards, but that feels good.

“I like pushing you in the sponge pit” Feedback from ward staff after the sessions included: “Could he go every day?"

"He seems so calm after he gets back."

"Often he has the best afternoon all week when he gets back.”

Staff from other users of the session also remarked: “Your guys really love this session don’t they? You can see it all over their faces.”

Overall, we were aiming to encourage increased activity to help preserve physical function for patients who have a neurological condition, and to maximise and preserve independence and function for as long as possible.

Over the 10-week programme we have seen a significant improvement in each patient’s mobility. We have signed up for next term and are busy thinking of new activities to continue to provide challenges for the patients outside of their comfort zone; but more importantly, allowing them to have fun whilst being active. For the less physically able patients that are unable to attend the programme we are looking at incorporating some of the ideas from the sessions into our own programme at the hospital so the patients can be active and have some fun.

Penny Jarrold is a senior physiotherapist at St Neots Hospital, part of Elysium Healthcare. www.elysiumhealthcare.co.uk.

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Over the 10 week programme we have seen a significant improvement in each patient’s mobility

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NRTIMES 35

TECH N OLOGY Sponsored feature

Walking the walk

Intensive neuro-rehab provider MOTIONrehab has been putting ReWalk’s ReStore device through its paces and reports on its findings here.

MOTIONrehab believes in using technology that can help and promote rehabilitation. It is essential that any technology implemented by MOTIONrehab is there to help promote outcomes and functional recovery. This means the technology has to facilitate high repetition and practice of movement patterns to provide intensive neuro-rehab.

In 2018, MOTIONrehab opened the UK’s first highly intensive neuro-rehab centre based in Leeds. The selection of devices for the centre was crucial and Director, Sarah Daniel, ensured the devices chosen were backed by clinical evidence and could really promote outcomes by allowing patients to practice high repetitions with natural movement patterns. When ReWalk approached MOTIONrehab to see if the ReStore could be integrated into MOTIONrehab’s clinical practice and trial it with their clients, the team felt the device fitted MOTIONrehab’s portfolio perfectly.

The ReStore uses a sensor-based system to detect a patient’s walking pattern and at the appropriate times the ReStore robotics will lift and lower the foot to naturalise the walking pattern to improve gait biomechanics. Uniquely, The ReStore robotics not only provides a lift of the foot during the swing phase of walking, it also assists the user into plantaflexion to recreate the ‘toe-off’ phase of gait and facilitate propulsion.

It was very clear early on while working with ReWalk that the ReStore would have huge benefits to patients in the acute phase of their rehabilitation, for example, the early days post stroke or even early after a MS relapse.

MOTIONrehab is now working with the ReStore to explore its role in more chronic patients and individuals who are further down the line in their rehabilitation.

Tom McGregor, clinical lead for Hull and East Yorkshire at MOTIONrehab, says: “We already utilise other technologies, including robotic gait training and functional electronic stimulation, and we’re always

By being able to walk greater distances, patients get the repetition needed for neuroplasticity

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on the lookout for anything new that might assist our clients in rehab.”

“Our initial impression is that the ReStore has the potential to influence neuro-plasticity, “re-wiring” of the nervous system, for a range of patients and presentations . By using the ReStore patients have better gait biomechanics which in turn is resulting in increased walking distances, faster walking speeds and greater confidence to walk. The facilitation of the push off and lift of the foot during walking in a naturalised gait pattern is permitting high repetition of stepping needed to influence the nervous system to enhance outcomes”.

“We’re using ReStore as a therapy tool in clinic to optimise our treatment sessions. The clients that have tried it so far have reacted really well, so the plan is to utilise it on successive sessions over the coming weeks and months.”

The device can be used in three separate modes.

Firstly, in a ‘slack’ mode that provides no assistance.

Secondly, in a ‘brace mode’ that replicates the rigid support usually provided by an ankle-foot orthosis (AFO) and lastly, in the ‘active’ mode where it provides dorsiflexion and planta-flexion synchronised with the user. Standardised assessments of walking can also be measured, such as the 10m, two minute and six minute walking tests.

Tom says: “Following stroke or neurological illness patients commonly experience weakness or loss of control around the foot and ankle. This can frequently impact on their walking abilities and it can take a lot of effort to move. If we’re assisting in that movement, we often need two therapists and it can be quite effortful for the both therapist and client.” “With the device on, it takes some of that away and gets the client moving more naturally at the ankle through the use of the targeted robotics. It gives the patient a natural pattern of push-off (planta-flexion) and lift up at the ankle (dorsiflexion) – which makes the leg lighter so they can then take a step forward. I have found that the outcome reporting from the device has been helpful in treatment sessions to monitor and measure progress.

T E C HNO LO GY Sponsored feature

Using the internal sensors in the device, the ReStore collects walking parameters such as gait speed and number of steps. By switching between the modes on the device you can accurately track progress and measure outcomes accurately.”

MOTIONrehab has found that patients have responded positively to the ReStore. “A good example of the benefits is the outcomes from one of our client’s using it for the first time. It’s worked really well, he was able to put less effort into his walking and achieved a better step with less effort. That allowed us to walk significantly greater distances with more steps than we would usually be able to do in a session.”

Sessions with the ReStore at MOTIONrehab generally last 50 to 55 minutes. Setting up of the device is currently taking around eight to 10 minutes, although it is anticipated this will reduce with experience. The amount of walking distance enabled in sessions with the device, is “easily” double that of sessions without the device, says Tom. Another benefit of ReStore, aside from efficiency, is that it frees up the therapist to spend more time either analysing the client’s overall movement as they don’t require the same level of assistance, or the therapist can facilitate other areas of the body as necessary.

“It's meant that we don't have to assist clients as much with their walking because the device is supporting them. From a therapist’s point of view, that means we are better positioned to observe what the rest of their

body is doing – like their trunk position and weight transference.”

Restore has also brought a new level of reliability into the sessions, which breeds confidence in the client, says Tom. “The steps have a consistency that is hard to match for therapists manually supporting them.

With the device on, the patients know every time they step, they’re going to get a consistent and reproducible ankle movement, which is especially important if we’re working on gait.”

Another client advantage seen by Tom is motivation.

“One stroke survivor who would normally manage four or five walks using the 10-metre wall bar without the device, achieved 10 in our last session with Restore, double his usual walking distance with ease. When he has the device on, it really engages him and he actively wants to do more walking because he likes the feel of a normal walking pattern. Technology can sometimes be quite scary for clients but equally, if they know it’s going to help them, patients embrace it. It also adds variety into what we’re doing.”

MOTIONrehab will continue to work with ReWalk and the ReStore device over the next six months, collating data on its impact with clients and integrating it into its clinical practice. For more information on MOTIONrehab visit www.motionrehab.co.uk.

To register your interest in ReStore contact Stephen Ruffle (stephen.ruffle@rewalk.com / +44(0)7469254453). Read more: www.rewalk.com.

NRTIMES 37

MU SIC THER AP Y

SHE PUT HER HANDS ON THE KEYBOARD, PLAYED SOME NOTES AND THEN STARTED SPEAKING FOR THE FIRST TIME

Andrew Mernin reports on how neurologic music therapy is delivering “amazing” results on a busy London stroke ward.

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M US IC T HE RAPY

When a music therapist first came to Karima Collins’ stroke ward, her NHSissue sceptic alert fired up. “We’re trained to be quite critical and to focus on the evidence,” she says. “When someone makes grand claims about what the therapy can do, like improving attention, communication and reducing neglect, I was sceptical. How on earth could it do all these things?”

Then she saw the video evidence – and heard more about how neurologic music therapy (NMT) can transform outcomes in stroke patients.

Karima is clinical lead at London’s Charing Cross Hospital’s acute stroke ward, and a speech and language therapist.

The music therapy consultant was Daniel Thomas, from specialist therapy provider Chroma.

A five-week trial of NMT on the ward spiralled into a nine-month project funded by the Imperial Health Charity, which supports Charing Cross as part of Imperial Stroke Services.

The initiative, the first programme of its kind in

NRTIMES 39

MU SIC THER AP Y

an acute stroke unit setting in the UK, has won widespread acclaim, and the support of bodies including the UK Acquired Brain Injury Forum.

The idea was to embed a neurologic music therapist on the ward, delivering NMT in conjunction with other rehabilitation therapies to accelerate recovery.

Would the results match the impressive video evidence that swayed Karima at the outset?

Music therapy in long-term residential care environments is well-established and publicised.

YouTube is home to an abundance of clips showing people with dementia and other neurodegenerative diseases being lit-up by music therapy interventions.

But the obvious difference when attempting any kind of comparison is that this is a local stroke unit in a busy public-funded hospital, where stroke survivors from across North London come after their three days of immediate medical attention and stabilisation in the hyper acute unit.

“People can still be quite acutely unwell,” says Karima.

“Their levels of how awake and alert they are can be quite low, and they can be very fatigued.

"We weren’t sure it would work with these very sick, very early stage stroke patients, because we knew it was a very different setting to the traditional neurorehabilitation unit.

“The average length of their stay is only around 19 days, which is very short compared to the type of neuro-rehab unit you might associate with NMT, where people stay for eight to 12 weeks.

"We were also mindful of the fact that we didn’t want to reduce the amount of existing therapies patients were getting."

While it may not initially appear the ideal setting for such a project, the results speak volumes in terms of NMT's effectiveness.

An impressive 100 per cent of patients receiving NMT for aphasia achieved their target language in one session, with the project scoring the same level of success among patients who received NMT for dysarthria - increasing their decibel output by an average of 72 per cent.

Furthermore, 88.2 per cent receiving NMT for cognitive impairments were able to achieve one of their MDT goals in under two NMT sessions, and 85.7 per cent of patients with gait irregularities improved on average by over 40 per cent in a single session.

It was only beating a drum, but she really concentrated on that task and it really helped her

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Patient stories themselves help to articulate those statistics even more powerfully.

Karima remembers one patient who had not spoken during her time on the ward, did not want to interact with staff or patients and engaged reluctantly with the NMT project.

“She eventually agreed to sit at the keyboard. We found out from a relative of hers, as we conduct a music history questionnaire with the patient and their relatives, that she had in the past played piano and was very musical.

“So she sat and actually put her hands on the keyboard and played the notes from something she remembered, and then started speaking.

"That was the first time she came out of herself and initiated any kind of communication with anyone. It was amazing.

“Another patient was finding it difficult to stick to one thing, even in communication she was very distracted, going off topic and looking around, losing track of herself.

"But when she sat at the drums and played a rhythm, even while being distracted by other rhythms that were added in, she was really focused, absolutely 100 per cent focused on that activity.

"It was only beating a drum, but she really concentrated on that task and it really helped her.”

Through a combination of individual and group sessions, adapted to the needs of the individuals involved, and under the careful guidance of music therapist Charlie Flint, the project helped to uncover new ways of inspiring patients. It motivated them through a love of music, helping the medical team to find new ways of joint working on the ward.

Charlie was regarded as ‘one of the team’ on the ward through delivering NMT two days a week.

“One of the benefits we found came as a result of Charlie being able to conduct the team.

"He could say, 'if we are working towards these

M US IC T HE RAPY

functional goals, like the patient making a cup of tea or a sandwich in order to be able to go home, then how can we use music to integrate the same goals?

Can we get them into the kitchen, standing up and reaching to get their cup from the cupboard?'

“Even though we strive to devise realistic goal settings, often it’s easier to goal set within disciplines.

So, for example, if the physios were working on walking, they would just focus on that, and their goal would be to just get a patient up and walking.

Then the speech therapist looks at the stuff around language or speech. There isn’t always very much crossover.

“NMT had an interesting effect on how people thought about goals, with music at the centre of everything. Also, attention is so core for any physio, occupational or speech and language session the patient needs to be able to attend.

"We found that having music therapists there enabled us to speed up the process of getting the patient paying attention.

"So we could use music to improve attention faster because patients were very engaged with the music and the types of activity it offered.

“That would then speed up the process of opening them up to the next stage of their therapy.

"For example focus might start at 'music for attention', then 'music for the finding words you need to say'.

"It meant there was an extra tool in our toolkit for addressing the difficulties a patient has.

"It's very difficult to sit and make an interesting

Patients and families tell us they love it...

Staff feel that patients respond differently to it

session around finding a word for something, whereas actually attending to produce something based around music is much more motivational.”

Karima and the team's hope is that funding can be accessed so that the NMT project can not only continue in the stroke unit, but also to enable it to be extended to the neuro-rehab unit onsite at Charing Cross.

“We know it will work very well in the neuro-rehab environment, albeit with a slightly different model, because the patients stay there for longer.

"This means you can plan and predict how many sessions they might engage in."

Like many therapy types within neuro-rehab, proving cost effectiveness of NMT is vital.

"Ideally we would have set a trial up with some patients receiving NMT and some who weren't. That would have provided a control group where we could have compared and contrasted, but that takes a lot of time and we really just wanted the patients to have the benefits of NMT as soon as possible.

“The data we've gathered certainly suggests that it is cost effective and has a very strong influence on patient outcome and motivation.

"Also, patients and families tell us they love it. Staff feel that patients respond differently to it than traditional, slightly more boring therapy.

“We're also hoping to be able to bring in some volunteers - perhaps music therapists who want to specialise in NMT. That might be a great way of extending the impact."

Chroma has secured funding to continue its work at Charing Cross for three days a week throughout 2020. For more on NMT see: www.wearechroma.com.

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TECH N OLOGY Sponsored feature

Two-piece transformations…

Swedish innovation the Mollii Suit is helping neurorehab patients with a range of conditions to regain lost functions and boost their quality of life, as Richard Welch explains here.

Mollii Suit helps to improve movement and muscle control rapidly in people with spasticity, motor and movement disorders or abnormal muscle tone

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Often it is the seemingly little things that can motivate patients in rehabilitation. For example, we have been working with a lady with secondary progressive MS who came to us three years ago with one-sided walking and arm movement difficulties. She arrived at the first appointment and told us “I want to be able to put my hair up myself”.

Being able to independently complete this daily task was hugely important – and motivational – to her. It set us the challenge, alongside improving her walking, of getting the range of movement back into her arm.

When she left that first meeting, after an hour of wearing the Mollii Suit, she was able to put her hair up; and the effect remained for a number of hours after using it. There were also significant improvements to her walking. Three years on, tasks such as getting in and out of cars are becoming harder. But she tells us that using the suit, alongside FES treatment and physio, has enabled her to keep her mobility at the highest level possible given the stage of her condition.

Mollii Suit helps to improve movement and muscle control rapidly in people with spasticity, motor and movement disorders or abnormal muscle tone. Users include people with cerebral palsy, stroke, MS and brain and spinal cord injuries, and the device can be used at any age over three.

The suit stimulates the antagonist to the spastic muscle with low-level electric current. It is designed to trigger reciprocal inhibition, the body’s own reflex, to reduce the tension in the spastic muscle and to help activation of voluntary movement. The immediate effect of each 60 minute session lasts for up to 48 hours, so many users wear the suit every

T E C HNO LO GY Sponsored feature

other day, or every day with a few conditions. Using the suit regularly makes exercise or therapy more successful, encouraging the neuroplasticity that leads to long term improvements and changes to motor function. The device also reduces certain types of pain and improves sleep patterns.

As shown in the earlier MS case, Mollii Suit’s effect translates into the recovery of those daily tasks which collectively make for a more independent life.

For one client with an incomplete spinal cord injury, these tasks included being able to answer the house phone before it stopped ringing.

Her injury, caused by an abscess, had led to pain, spasms and lost mobility. She’d lost dexterity and fine motor skills and had balance problems, all of which severely reduced her abilities and quality of life. In her first session she was able to walk a short distance without crutches, in an almost biblical moment for her. She also showed significantly improved dexterity outcomes. These results and the reduced pain and spasms remained for over 24 hours after just the first session.

And, within a few weeks of using the suit at home, she told us that there were no more missed calls. If the phone rang across the other side of the kitchen, she could now spring up and answer it in good time.

Others with spinal cord injury or brain injuries also regularly benefit from both reduced spasms and spasticity as well as the functional improvements to allow rehabilitation to progress as well as just comfort,

sleep and well-being.

Similarly positive results were seen in the case of a 40-year-old man with primary progressive MS with ataxia (a lack of voluntary coordination of muscle movement).

Despite intense therapy in the community and in hospital, he was gradually losing his ability to stand and walk. His ataxia was severe and therefore meant a lot of uncontrolled dangerous movements. He was not able to drink or feed himself, or look after himself. To transfer from bed to chair he had to be hoisted and couldn’t undergo a standing transfer. After the first hour of using the Mollii Suit, he could be transferred by two people without a hoist.

To the clinicians watching, that was pretty remarkable.

But the acid test came during three months of regular use.

Among many positive outcomes, he was able to walk up to 100 metres with a walking frame and some assistance, after a smooth transfer.

Perhaps more significantly to him, however, he was able to throw a ball to his young son and interact with him safely for the first time. Due to its significance this case was presented at a recent international neurology conference.

In all the cases set out here, using Mollii Suit has been built around a clear understanding of the individual’s situation and their very specific needs.

Of course, objective medical outcomes drive our treatment programme. But of huge importance to the patient is being able to do those personal things in life – like putting your hair up, chatting to loved ones on the phone and playing with your children.

Richard Welch is director of Remotion, Mollii Suit’s UK distributor. To access Mollii Suit in the UK visit www. remotion.co.uk or contact Mollii@remotion.co.uk.

NRTIMES 43

LEGAL

Addressing the paradox of employers’ liability insurance

If an individual suffers an injury on the road through the negligence of a driver, they will recover compensation.

This is because of the provisions within Section 143 of the Road Traffic Act 1988.

Even if there was no insurance attached to the vehicle, the Motor Insurers’ Bureau would satisfy any unsatisfied judgment.

Although there are numerous cases in which insurers in road traffic collisions have tried a variety of methods to avoid liability, ultimately subject to liability, an insurer or the Motor Insurers’ Bureau usually pays.

The position is profoundly and tragically different for victims of accidents at work. Section 1 of the Employers’ Liability (Compulsory Insurance) Act 1969 requires every employer to insure against personal injury sustained by his employees arising out of that employment.

So far, so good. The intention of the Act is clearly to protect employees who go to work and suffer personal injury through no fault of their own.

However, unfortunately, there is no equivalent to the provisions within the Road Traffic Act 1988, neither is there an equivalent to the Motor Insurers’ Bureau for employers’ liability cases.

Usually in employers’ liability cases, the breaches

Irwin Mitchell was involved in a case which highlights the significant injustice which can arise

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Urgent changes are needed to the legislation that governs severe injuries in the workplace, write Irwin Mitchell’s David Withers, Sarah Parkin and Joanne Witherington.

relied upon to prove negligence by a Claimant also act as a Defence to an insurer seeking to avoid liability; under the guise of material non-disclosure and material misrepresentation at the inception of the insurance policy.

For example, if there are breaches of health and safety legislation, an insurer may assert that the policyholder (the Defendant in the personal injury claim) never had a health and safety policy which they adhered to.

If they had stated that this was the case when the insurance contract was entered into, the insurance will in all likelihood be null and void.

Irwin Mitchell was involved in a case which highlights the significant injustice which can arise.

The Claimant’s name has been anonymised to protect his identify. He is referred to as “James”.

James was working for a scaffolding company. He fell from height.

The reason for his fall from height was because of significant and numerous health and safety breaches by his employer.

As a result of the accident, he sustained a spinal cord injury.

James’ employer was convicted after an investigation and prosecuted by the Health and Safety Executive.

They were fined. The directors subsequently decided to start liquidating the company.

A new company was started, and the little assets that remained were transferred. James initiated a claim

L E GAL

against the liquidated company (before it had been dissolved).

After the prosecution, the company’s insurers withdrew indemnity on the grounds that the company had breached the terms and conditions by failing to have a “health and safety policy” which was followed.

The company had indicated, when taking out the insurance policy, that they had a policy which they followed.

In effect, the insurer relied upon the company’s breach of duty as a reason to avoid meeting the claim from James, an innocent employee.

This is the paradox.

The insurer only investigated the company’s health and safety policy when it had a significant financial interest in the outcome.

The whole purpose of the insurance is for the benefit of an employer’s employees.

Section 1 of the Employers’ Liability (Compulsory Insurance) Act 1969 specifically states “Insurance against liability for employees”.

However, through no fault of his own, James sustained a spinal cord injury and again, through no fault of his own, the company’s insurer was able to avoid paying him.

James’ case was a particularly devastating one, where the lack of a statutory obligation for an insurer or an equivalent body to the Motor Insurers’ Bureau to discharge a third party’s claim led to serious life changing injuries without an appropriate financial

remedy available. He recovered some damages because of the tenacity shown, willingness to challenge the status quo, and innovative arguments raised by Irwin Mitchell.

In reality, however, this was heavily discounted to reflect the risks that a Court would find that the company’s insurers were entitled to void the policy.

James, the innocent person at the centre of all of this, is unable to work and is raising a young family with a spinal cord injury.

Irwin Mitchell has urged Parliament to protect employees to ensure that if they go to work and suffer injury, particularly a serious life-changing injury, they are able to secure compensation from an insurer if the employer does not have the means to pay.

In addition, if an employer does not take out insurance, there should be a body set up to meet claims such as the Motor Insurers’ Bureau for road traffic collision cases.

It is inexcusable that James has to live with a spinal cord injury through no fault of his own and with no redress. This nonsensical inconsistency in employers’ liability cases needs addressing urgently.

There is no such redress for those injured at work, and the paradox continues.

David Withers is a serious injury partner, Joanne Witherington is an associate solicitor and Sarah Parkin is a solicitor, all at Irwin Mitchell. www.irwinmitchell.com.

NRTIMES 45

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For more info contact gary@aspectpublishing.co.uk.

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Reaching all private and public sector care environments Read by management, lead clinicians, lawyers, case managers and all other types of neuro-rehab professional The only platform bringing together every discipline in brain and spinal care

T E C HNO LO GY

VISION The worldâ&#x20AC;&#x2122;s biggest medical technology event took place in Germany in November.

NR Times joined over 5,000 exhibitors at Medica 2019 in Dusseldorf to find out whatâ&#x20AC;&#x2122;s on the horizon in neuro-rehab.

NRTIMES 47

TECH N OLOGY

The twin forces creating a rehab superpower It’s 20 years since Hocoma’s robotic rehab machine Lokomat was launched. In the decades since, over 300 peer reviewed journal articles on the gait training device have been published.

While Lokomat’s evolution has continued to be driven in that time, other devices have thrived too; including ArmeoPower, the world’s first exoskeleton for integrated arm and hand rehabilitation.

At Medica 2019, however, digital health is among the latest focus areas.

HocoNet is a single software platform which connects to all devices in the Hocoma stable, as well as the existing hospital information system. It enables rehab professionals to manage and keep track of patient, treatment and device data in a secure manner.

Patient information need only be inputted once, on

Hocoma's digital health platform HocoNet in action

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There is growing recognition of the need to better connect patients and therapists with the right

one device at the outset and is then synced across all equipment that the patient may require. While it is loaded with numerous clever features, the overriding benefit is a vast reduction in the time spent on administrative tasks, and more time to treat patients. Edward Heckes, global head of marketing & sales enablement, tells NR Times: “A trend we’ve seen in recent years is growing recognition of the need to better connect patients and therapists with the right sort of data. HocoNet aims to connect all of our devices involved in rehabilitation. So if the patient is practicing on one machine, information from that session goes back into the system and is used to calibrate their new information on any other machine.”

As well as Hocoma devices, the system also syncs up to devices produced by fellow rehab technology brand Motek. Both companies have now been part of Hong Kong-headquartered DIH International for a few years, a fact which strengthens their parallel development, says Heckes.

“Through the different types of technology offered

by Motek and Hocoma, we have really been able to further push rehabilitation technology spanning research and hospital environments. Motek has predominantly been involved in research, so we work with lots of universities, military organisations and any other parties aiming to gain a better understanding of human movement. But Motek has been crossing that channel into clinical settings for some time too and it’s quite common to see Motek products in leading hospitals and clinics today.”

A rising star of Motek’s rehab tech offering is the C-Mill, which fuses a treadmill with augmented and virtual realities. In a demonstration at Medica, we watch a user navigating a serious of objects projected onto the surface of the treadmill, while also navigating an on-screen environment up ahead. The machine offers an objective assessment of balance and gait. Crucially,

T E C HNO LO GY

Although it continues to evolve, the Lokomat has now been in action for more than 20 years

Combining augmented and virtual reality adds to the patient’s motivation

it also provides intuitive training in foot placement, balance and dual tasks. Body weight support options enable its usage from early through to late rehabilitation. Although a relatively large piece of kit to accommodate, at less than four by four metres it is significantly smaller than a traditional gait lab.

“Combining augmented and virtual reality adds to the patient’s motivation. This is something we’ve learned with the Lokomat – it’s really important to keep patients motivated if they are having to use it again and again during their rehab treatments.”

A poster boy for C-Mill’s power is the British professional golfer Mike Jones. After he lost his leg in a motorcycle accident, the C-Mill at the Morrello Clinic in Newport Wales, was instrumental in his recovery. Other UK locations to have used the technology include the Brain and Spinal Injury Centre (BASIC) in Salford and the Portland Hospital for Women and Children in London.

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TECH N OLOGY

Meet David, a global innovator in rehab

David aims to help patients take advantage of the increasingly recognised benefits of exercise in rehabilitation.

A paper published earlier this year reaffirmed the value of exercise in slowing Parkinson’s disease.

“Exercise helps maintain brain connections and counters brain shrinkage from Parkinson's disease as well as from brain aging,” wrote Eric Ahlskog, a neurologist and author of The New Parkinson's Disease Treatment Book.

More exercise is also being increasingly linked by researchers to faster stroke recoveries – and lower stroke risk.

A systematic review of evidence published in November in the Journal of the American Heart Association (JAHA) examined 19 studies of aerobic training programmes for stroke survivors. The researchers found that programmes providing two to three exercise sessions a week, for 30 to 90 minutes per session for eight to 18 weeks, resulted in significant improvements in aerobic capacity and the distance the stroke survivor could walk in “the six-minute walk test”.

That exercise is a force for good may seem patently obvious, but it is “only in the last five or six years that medical guidelines in most countries have stated that the first line of treatment should be exercise and movement,” says Dan Rice, spokesperson for rehabilitation company David.

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David, whose expansive Medica stand has the air of a high-end Nordic gym, is a long-established Finnish firm with its roots in sports science and research.

But three decades ago it diversified into rehabilitation of muscular-skeletal and neurological conditions. Its exercise-based approach to treatment is now in high demand, with 1,000 clinics in 40 countries.

Dan says: “We’re using exercise as a formalised, medical approach to muscular and neurological conditions.

"When patients come into our clinic, they are evaluated on all of our devices. This gives us an understanding of their functional deficiencies and we can use this baseline evaluation to deliver a treatment, which is effectively a dosage of exercise."

David has 17 machines that each have very specific biomechanics.

“For example, in terms of spinal care, our devices will affect or train very, very specific parts of the back, blocking out all bigger muscles.

“Then obviously the data side of what we do is extremely important. The systems have a form of intelligence and learning. So, based on how the patients perform and the feedback they give, there will be an adaption in the training protocols.”

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Dysphagia device that continues to deliver Studies show it can improve the outcome of stroke patients, leading them to be able to swallow when previously they couldn't

The swallowing disorder dysphagia is experienced in as many as 93 per cent of people admitted to brain injury rehab centres (Hansel et al, 2008).

It will affect around one in two stroke survivors, according to the Stroke Association, and roughly at least a third of people with MS. Meanwhile, over 80 per cent of people with Parkinson’s may be affected (Suttrup et al, 2016).

Speech and language therapists and other rehab professionals may employ a range of techniques aimed at triggering the swallowing reflex and strengthening muscles needed for chewing and swallowing.

There are also technologies which can help to tackle the disorder, including Chattanooga’s VitalStim range.

The device unites the power of electrical stimulation with the benefits of swallowing exercises.

It was the first neuromuscular electrical stimulation (NMES) device cleared by the FDA for use in dysphagia therapy and is now used by over 27,000 providers in

It unites the power of electrical stimulation and swallowing exercises

40 countries. At Medica, spokesperson Paul Kilduff tells NR Times: “Several studies have shown that using VitalStim can improve the outcomes of stroke patients, in fact leading them to be able to swallow when previously they couldn't.

"It works by putting electrical stimulation across the throat and measuring the feedback from that stimulation, and helping the patient train their swallow reflex to regain it.

“Although it’s not a new technology, it is definitely being used more having been approved for use in the US and Europe.”

A 2013 study involving the Carlos III Health Institute in Barcelona, ​​Spain, tested the device on 20 post-stroke patients with a mean age of 75. It concluded that VitalStim is a safe and effective treatment for chronic poststroke dysphagic patients.

Numerous other studies have taken place since, including, in 2018, by the Affiliated Hospital of Qingdao University in China.

Its study of 30 patients with dysphagia for less than six months found that VitalStim treatment added to traditional dysphagia therapy, producing significantly better swallowing effectiveness and safety outcome scores.

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The manual therapist’s new best friend?

Musculoskeletal pain caused by spinal disorders reportedly costs the US health care system US$874bn per year, and is the most common cause of severe long-term pain and disability.

New York-based Spine Care Technologies, launched in March 2018, believes it has the answer in the Extentrac Elite; which enables non-surgical, drug free, disc and spine care treatment.

The device is a multidirectional decompression device used to aid the treatment of spinal injuries, mostly from the thoracic (mid) to the lumbar (lower) spine. It is used in in the treatment of minor degenerative disc disease, through to drop-foot and serious neurological impingement. The device must be operated by licensed clinicians involved in manual therapy. It enables them to optimally position the patient for treatments. Dr Heather Rosenberg, who believes her Californian clinic has been revolutionised by the device, says: “It's an extension of my hands and brain”.

Demonstrating the device at Medica, she explains: “I can have a patient supine or prone, on their stomach or their back, I can laterally flex it, I can put it into further flexion or extension, depending on what position they are in.

I can have my hands on the patient at all times. I can also run it manually, or set up an automated programme. Nothing else allows you to get this versatility in terms of being able to apply manual traction and treatment to a disk and a segment. We can pull bulging discs back in, we can create negative pressure through the machine, pulling and harnessing, and we can apply a direct, specific approach right at the injury. If we

The device is a multidirectional decompression device used to aid the treatment of spinal injuries

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The Extentrac Elite

can create a vacuum, a negative inter-disc pressure we can pull things back into place. We force fluids in with the distraction and change the outcome of nerve impingement. The versatility is incredible.”

Company spokesperson Maria Cuccia says: “It enhances manual therapy treatments. As far as research papers go, doctors are already using different protocols where there is evidence base for those methods. This device enables the clinician to apply whatever method they feel is necessary depending on the condition.”

See more at www.spinecaretechnologies.com.

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Home run for stroke innovation

Visit NR Times online at www.nrtimes.co.uk for more of our interviews with innovators at Medica.

Virtual reality is developing rapidly within rehabilitation.

When “combined with conventional rehabilitation” it has the potential to improve motor and cognitive performance in neurologic patients alongside “additional benefits” (Maier M et al, 2019).

New tests of its efficacy continue to emerge, while technological advancement is blurring the lines between the real and virtually real.

Few VR rehabilitation systems can boast as much clinical evidence as that developed by Barcelona tech firm Eodyne in partnership with SPECS-lab, part of the Institute for Bioengineering of Catalonia (IBEC).

The Rehabilitation Gaming System (RGS) has been over 15 years in the making (Ballester et al, 2019) – and is now used in 50+ hospitals in Europe, the US and South America. It brings together artificial intelligence, sensor technology and gamified exercises.

It takes up little room in clinics and hospitals - with just a screen, motion tracker and a pair of wearable “sleeves” with calibration sensors.

And it certainly packs a punch, helping people with stroke, as well as other neurological conditions including traumatic brain injury, to reclaim lost functions. In terms of hand strength and function, it enables motor training of hand supination and pronation, grasp and release, pinch, finger extension, general strength and bimanual coordination.

Comprehensive upper limb training is also supported, in areas such as reaching, range and speed control and alternate coordination.

Cognitive training is delivered in the form of sustained and divided attention, action planning and memory.

The firm has also developed full body applications.

Eodyne is now working on a project funded by the European Union-backed healthcare innovation group EIT Health, and involving various clinical, academic

and technology partners, to dramatically spread the reach of RGS. The RGS@HOME project aims to develop a home version of the system to assist patients with motor and cognitive recovery after a stroke.

The solution will speed-up recovery and, by allowing for home treatment, drastically reduce the length of hospital treatment that patients require.

Eodyne’s business development director Santiago Brandi tells NR Times on a busy stand at Medica: “When people go to outpatient rehabilitation, they normally spend up to six months receiving rehabilitation.

"This may involve ambulance trips and other use of infrastructure resources. The idea is that we can discharge them earlier by providing a tool to deliver home-based rehabilitation. With just a computer and a sensor you could train as many hours per day as you can, which is very important for recovery.

“We’re currently conducting scientific preparation of the technology and validation studies. In 2020, we’ll be testing the system in patient homes in Sweden, France and Spain. The science behind it and the clinical effect have already been validated, so we’ll instead be validating the usability and the adherence of patients. Then in 2021 we hope to commercialise it.”

Under current plans, the cost of the product will be in the region of about £80 per patient per month to hospitals or trusts.

“The idea is to bring about a massive reduction in healthcare costs,” says Brandi, who believes Eodyne’s advantage in a competitive market of rehab aids is the weight of clinical evidence gathered over 15 years.

Also, the company’s lab is building “an ecosystem of stroke products” – including one related to treating speech difficulties – that RGS users could benefit from in future.

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WHY FEMALE BRAIN INJURY FOCUS IS NEEDED

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The effect of brain injury specifically on women has long been under-researched, but through the efforts of a pioneering international charity, the inequality is now being addressed.

Katherine Snedaker, founder of PINK Concussions, tells NR Times about its new partnership with the University of Glasgow, which has brought the charity’s efforts into the UK While greater attention and resources have been channelled into researching the causes and effects of brain injuries in recent times, there remains an undeniable gender imbalance in the issue.

Research primarily focuses on men, despite the fact that statistics show that women sustain more concussions and at a higher rate than their male counterparts in the same sports . A study from the National Collegiate Athletic Association (NCAA) Injury Surveillance Program, for example, revealed the rate of concussion per 1000 athlete exposures in football is 6.3 in females versus 3.4 in males.

Women are also shown to experience more severe symptoms and take longer to recover, with research revealing female athletes had symptoms for an average of 28 days, compared to 11 in males.

Yet despite this, no female-specific brain injury guidelines exist in the sporting, military or healthcare arenas, and in-depth research specifically into women suffering brain injuries remains very limited.

Moves are being made internationally to change that, led by PINK Concussions, the world’s first non-profit organisation for women and girls living with a brain injury, established to tackle such gender imbalance and shift the focus onto females.

Based in the US, PINK Concussions focuses on female brain injury, not only from sports concussion, but also from domestic violence, accidents or military service. In 2020, PINK Concussions plans to make these invisible injuries in women visible with a goal of recruiting 2,020 women across the world to

For many years, people just said it's because women aren't as tough as men. Women are weaker and complain more

pledge their brains to research.

Its pioneering #PINKBrainPledge, which encourages women to donate their brains to science, has now reached the UK through PINK Concussions’ recent partnership with the University of Glasgow - the first active recruitment of women in the UK to be a part of brain injury and chronic traumatic encephalopathy (CTE) research. To date, it has partnered with several brain banks around the world, with hundreds of women already involved. The Glasgow Brain Injury Research Group is run by internationally renowned researcher Dr Willie Stewart.

He himself concedes that despite the significant advances in brain injury research, “we most recognise that sex differences have not been adequately explored”.

Among those to give their backing to the campaign is trailblazing footballer Rose Reilly, named the world’s best female footballer in 1984, who believes research into female concussion is vital, and says she knew former players who have died of degenerative brain conditions. Commonwealth Games bronze medalwinning judo star Connie Ramsay and former rugby international Lee Cockburn have also pledged to donate their brains to the Glasgow Brain Injury Research Group.

For Katherine Snedaker, founder and executive director of PINK Concussions, the partnership is a huge breakthrough for the charity and its efforts to proactively engage women in the UK and raise awareness of the need for research in this area.

“In the past, the focus of brain injury research has primarily been on male brains, without any active recruitment for women to pledge their brains after death,” she says.

“I think for many years, people just said it’s because women aren’t as tough as men. Women are weaker and complain more.

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“I’ve seen some really great sports doctors say ‘Oh, she’s just highly strung, or ‘She’s just emotional’.

“In brain injury, it’s been men doing research on men or male animals. When they use female animals it’s messy.

If a lab rat goes through its menstrual cycle every six days, that really throws off results, so it’s pretty uniform that they don’t do research on female animals.”

PINK Concussions, which is helping to instigate debate internationally in this field, was born when Katherine worked as a social worker in the US. While helping children with concussion, she started to notice differences between how parents of boys and girls responded to injuries.

“The girls’ parents were calling me weeks or months after the incident, yet with the boys’ parents it was within hours or days. I just kept seeing this pattern,” she says.

Katherine, who has three sons, initially put this down to bad parenting, but now sees it as a consequence of widespread lack of awareness about female brain injury.

“If you don’t know what a concussion is, you’re going to be less likely to get the help in the time that it takes,” she says.

“People might have some of these symptoms, like headaches and nausea, anyway. If you don’t know what you’re feeling, you can’t know what to look for.”

It was while looking for research on the differences between brain injuries in males and females that she first discovered the lack of equality in the field of research - while there was information out there, it was always in the small print, never the focus of the study itself.

Having been established in 2013, and securing nonprofit status two years later, PINK Concussions has gone

Usually women’s sports are underfunded, and traditionally they have fewer medical staff on the pitch or the field

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on to hold seven international medical summits and scientific conferences, and built an advisory board of over 80 experts from around the world.

It also routinely works with major US health organisations, including the Centre for Disease Control and Prevention and NIH (National Institutes of Health), and provides support groups for more than 4,000 women and care workers.

Yet despite its international achievements and rapidlyincreasing profile, the scale of the charity remains very modest.

“We’re a small organisation and we’re all volunteers,” says Katherine. “The annual number of donations we take in is probably smaller than most school sports teams do, but we’re the only ones who do what we do.”

Katherine and her team are committed to closing the gap in research by challenging the accepted ways of practice. Through her investigation into why such discrepancy exists, Katherine found that the majority of brain injury research has been conducted on athletes, and the sports with the highest risk of concussion, such as American football, rugby and boxing, are maledominated.

“If you want to see a bunch of guys with a brain injury where do you go? The (American) football field. Football has always worked out well in providing men to be studied,” she says.

“Usually women’s sports are underfunded, and traditionally they have fewer medical staff on the pitch or the field.”

But, as Katherine explains, it’s not just the sporting world which is neglecting to address the issue in women.

In the military, safety and training equipment is often designed for men, and women are less likely to speak out about an injury for fear of being judged as “not tough enough”.

“Women are trying to operate and train on equipment that’s not necessarily made for them. A woman who might be the only female in her platoon may be less

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likely to come forward if she’s injured, because she doesn’t want to be the one being pointed out,” she says.

One other area, crucial to the whole topic of female concussion and CTE, is exploring the effects of domestic violence. Blows to the head, face and neck combined with asphyxiation from strangulation, can lead to many women living with undiagnosed brain injuries.

Dr Eve Valera, a PINK Concussions board member and assistant professor in psychiatry at Harvard Medical School, is now working on a new study, replicating many of those which have been conducted on male athletes, exploring the long-term effects of these brain injuries for women.

“If we’re talking about neurodegeneration in women, we really know nothing. I call it an international public health epidemic.

We have all these resources and money and studies on male athletes and there’s nothing like that with respect to women experiencing intimate partner violence,” she says.

“There’s a disjoint between what people are learning from sports or military data, where we see most repetitive head injury research, and what a woman may think is going on with her.

“There’s an awareness that playing football can lead to injuries that can have long-term neurodegenerative consequences but for the most part, there’s no public awareness that, if you’ve been in a physically abusive situation and you’re getting these types of blows to the head, you may have a long-term neurodegenerative disease.”

Katherine believes studying brains of women affected by brain injury in any form - as well as those who have not - could lead to huge developments in brain injury

We’ve proven the same thing over and over again, that there are differences

research, and the growth of her #PinkBrainPledge is helping to secure widespread attention and support for the campaign.

“Any woman can pledge her brain for our programme.

As much as we need women with brain injuries, we also need women without, for controls,” says Katherine.

“We’ve proven the same thing over and over again, that there are differences. Now we’re trying to push the research to the next point. Let’s figure out why these things are happening.

“Slowly, we’re spreading out and women are learning more about brain injury. But I’m hoping that the gains we make in female brain injury we can apply to men, too.”

Women interested in participating in research are encouraged to take the PINK Concussions #PINKBrainPledge. For more information visit: http://www.pinkconcussions.com/

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ON THE ROAD TO REINVENTION London actor and creative Byron Konizi has emerged from years battling the effects of brain injury with a plan to help others like him, as Andrew Mernin reports.

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Byron Konizi wants to do away with the word ‘rehabilitation’.

He believes he has a better term for brain injury recovery.

But this is no lexical whimsy.

His conclusion comes after a decades-long journey into the world of neurological treatment, to the brink of death and back again.

It started with a bike ride at age six that sent him freewheeling onto another life trajectory.

He fell off, sustaining a head injury - the first in a series of traumatic brain experiences in his life.

These dark chapters have shaped a new organisation that wants to bring about a post-brain injury revolution in the UK. “After the first accident I had stitches but then about a year later started having more serious problems.

I’d be in excruciating pain, in a state of agony, but the doctor said I was fine and probably just wanted time off school.

“Eventually they did a brain scan and there was swelling and bleeding and I was rushed in for emergency surgery. I would have been a goner if they’d waited any longer.”

He had to relearn to walk and talk and, following intermittent bouts of unconsciousness, faced more brain surgery to fix problems with the original operation. He also developed epilepsy.

“I couldn’t read or write for a while after that, although strangely I became really good at chess and won the borough chess competition.”

A further scare followed when doctors spotted an anomaly on his brainstem.

They monitored it over six months and Byron’s family were told that he could be in grave danger.

“During that time, I did the whole Disneyland thing because we didn’t know how long I’d be around for,” Byron says. Thankfully the anomaly didn’t progress and hasn’t since, although it is regularly monitored.

“I then spent my teens trying to recover and was on lots of heavy drugs which was interesting. I was really good at some things but an absolute disaster

I retained intelligence but I just couldn't keep up with the other kids

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at others. I found it difficult to participate in all sorts of things. I tried to study for my GCSEs but felt I was coming up against intellectual bullies who would give me a hard time because my concentration and memory were impaired.

“I retained intelligence but just couldn’t keep up with the other kids because my brain wasn’t functioning as it should have been. I was good at short burst stuff but anything that required me to concentrate and persevere I couldn’t do, I would just drift off.

“I went off the rails and also became quite depressed and anxious because I didn’t fit in and had to seek help.”

Despite these challenges, his creative flair shone through and he was accepted at the world renowned art college St Martin’s in London.

He also practiced performing arts and song-writing in his spare time.

Cognitive impairments persisted, however, and he struggled to cope with the rigours of his education and dropped out.

I had to have all the old surgery redone. Following the operation I lost my sight for a period of time and I was very poorly

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Byron was then able to access neuro-rehab services in Cambridge which “helped me to understand my brain injury”.

“I got back to my studies having been accepted back at St Martin's but started realising there was always a barrier to how far I could go because there was always administration, paperwork and bureaucracy that my brain couldn’t cope with."

By his early 20s, he was working as a graphic artist and designer and secured a position in the London Mayor’s office as an adviser for inclusivity and equality. Career highlights included helping to design the London 2012 Olympics mascot and creating a tube map for people with disabilities and certain health conditions.

“I also wanted to set up a charity to help people like me but I just couldn’t do it.

"Everywhere I’d go to get funding and support, it was all paperwork and administration, which I couldn’t do. It was ironic since that’s exactly the sort of thing I wanted my organisation to help people with."

At age 30, Byron sustained yet another brain injury, from “a whack on the back of the head in Central London” which he can’t discuss in detail for legal reasons.

“I had to have all the old surgery redone. Following the operation I lost my sight for a period of time and I was very poorly.”

The incident came just as a flourishing career as an actor was developing, having featured in various TV and radio productions, including Zoe Ball's Book Club and the hospital drama Casualty.

“Everything fell apart again and I had to spend the next year recovering.”

That wasn’t the final curtain for his acting career though. In 2017 he was the lead in the short film I used to be famous, which won several independent film awards and was shown in film festivals across the globe. Byron played a musically gifted man with autism, alongside Naomi Ackie, who is now featuring in the latest Star Wars blockbuster.

The role prompted a letter of praise from Sir Roger Deakins, the cinematographer best known for work on the films of the Coen brothers, Sam Mendes, and Denis Villeneuve.

But his big passion project now is helping other people affected by long-term health conditions, including brain injury.

“I had a lot of sadness about the mistreatment of people with neurological conditions. Two close

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friends had died and I’d lost another friend I’d made while in hospital having surgery and I just wanted to do something to help people like those I'd lost.

“I’d also been involved in the brain injury APPG (all-party parliamentary group) at Westminster and spoke out quite angrily at what I thought was a failure to properly support people with brain injury in this country.

"The government could save millions of pounds and many lives if it addressed the issue which I didn’t feel was being taken seriously enough.”

Out of these experiences - and all that has passed since he came off his bike as a six-year-old - came his new innovation UDAV, "the world's first Cocooge centre". The word Cocooge (pronounced cocooj) is very significant to Byron.

“This is our challenge to the use of the term ‘rehabilitation’ in relation to neurological trauma. I believe ‘rehabilitation’ to be mostly inappropriate and controversial because it is rare that people are truly rehabilitated following a neurological trauma. The term can perhaps be seen as creating an unachievable goal and possibly false hope for many. Rehabilitation suggests the objective is to return to one's original state.

“Cocooge better describes the actual process following a neurological trauma. It’s a combination of cocoon, meaning to incubate, and refuge. It means the process of protected incubation that immediately precedes reinvention.

"Like a caterpillar emerging as a butterfly, it suggests that an irreversible change has taken place. From my experience, this is a crucial stage in progressing to the next stage in life, perhaps even to something far greater than their original state.”

Byron has opened what he hopes will be the first Cocooge centre of many in his native Hackney in North London.

It is run under the umbrella of the charitable organisation he founded, UDAV. It is designed for people marginalised due to the fallout of brain injuries, neurological conditions or other longterm health conditions.

“The aim is to help them to reinvent themselves in a way that allows them to thrive, in their future careers and their lives generally.

The aim is to help them to reinvent themselves in a way that allows them to thrive

“There's a glass ceiling for many people with neurological conditions. As soon as you want to do something people start bombarding you with paperwork, admin, asking you to go through processes that you can’t do. So then you’re asking yourself where do I go in life? What do I do? And you end up isolated and alone.

“So what I’ve created is effectively a community centre that gives people a sense of belonging, and supports and protects them.”

Through creative activities, bringing together a cast of arts and culture groups and practitioners, the centre’s overriding aim is to help people with neurological impairments “to evolve” rather than stagnate in life.

It’s early days for the organisation but current initiatives include a photography studio at the centre, sign language lessons and various art and music projects.

“A lot of the people we’re helping actually worked in creative sectors but had to stop because of their trauma.

For example, we have a lady who used to be a TV producer whose career ended because of a brain injury, we also have an artist with PTSD and a photographer with a brain injury.

"All of these people are really good at what they do but because of their injuries and conditions, they can no longer do them professionally.

"We pull them in and support them through workshops, health initiatives and other activities which keep them busy, helping them to evolve. But also they check in here just to see their friends.”

One member is a photographer and survivor of multiple strokes.

“He’s a really good photographer but he can’t do the social stuff required to arrange the models and so on.

We’ve not only provided him the premises but also arranged for fashion designers and models with longterm medical conditions to come in and work with him.

We’ve also got a brain injured graphic designer, so it all fits together.

“We basically help them with the things they can’t do. We all work together and make good things happen and give everyone something to belong to.”

The launch of the organisation has been backed by London property developer and entrepreneur Jack Baswary who provided UDAV with the necessary support needed to get it off the ground.

UDAV is keen to work with further investors and partners as it aims to open Cocooge centres across the UK and internationally too.

For more information see www.udav.world

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A charity which encourages brain injury survivors to put others first is helping them to re-find their place as valued members of society. Deborah Johnson reports.

“I was hearing the same story over and over again,” says neuropsychologist Dr Sherrie Baehr.

“It was one of isolation, sadness and loss of direction.”

These accounts came from brain injury survivors who, with depressing regularity, told Sherrie how society was rejecting them post-injury.

After one such tale too many, she decided to take affirmative action by launching a charity that enables people with brain injuries to help themselves by helping others.

The Silverlining Brain Injury Charity has, since being established in 2006, helped countless people across the UK to rebuild their confidence and sense of purpose and achievement through participation in activities in the community.

It’s an approach Sherrie developed to help people channel their many emotions into something purposeful; which has the dual benefit of helping communities and the people who live within them, while also giving the opportunity for people with brain injuries to take part in structured activities which can help their ongoing recovery.

“People might not fight for themselves as hard as they’ll fight for someone or a cause they care about.

"And because brain injury rehabilitation doesn’t end in six months, it doesn’t end in two years, it’s a forever process - why not make it have meaning and why not use it for the greater good?,” says Sherrie.

Statistics show that someone in the UK is admitted to hospital with an acquired brain injury every 90 seconds - with such incidents up 10 per cent since 2006.

Sherrie is determined that Silverlining is a place for everyone, however they acquired their neurological issue and whatever their rehabilitation need.

“We do not discriminate in terms of how someone got their brain injury.

“We could have someone with a stroke, a brain tumour or a traumatic brain injury.

People might not fight for themselves as hard as they'll fight for someone they care about

“We have people with MS, people with Parkinson’s.

If there's something wrong with your brain, you're welcome at Silverlining.”

Currently based in London, the charity also has branches in Surrey, Oxford, Bristol, Bath and Cardiff, and engages hundreds of people across the country.

Figures from the Centre for Mental Health suggest that good recovery rates for brain injury patients are as low as 14 per cent.

Against such statistics, Silverlining aims to provide an innovative route to better outcomes.

Its activities are varied, with a strong sense of purpose, ranging from raising funds and organising fundraising events for victims of domestic violence and for cancer charity Macmillan; to creating serenity gardens, and organising book and art clubs.

The charity even visited Namibia is 2018, its biggest project to date.

It took 23 of its ‘Silverliners’ to visit a school which was in desperate need of assistance.

During their short visit, the group made a great impact by teaching the children life skills and also got involved with the indigenous San tribe, by joining in their traditional ways of life.

As well as taking part in such enriching experiences - a trip to Kenya is lined up as the next adventure - Sherrie points to how the charity can be crucial in enabling people to rediscover their sense of direction.

“We had one girl who was a dentist prior to her injury, but afterwards she wasn’t able to practice dentistry. She was, however, able to get lots of dental toothbrushes and such things for children in Namibia, to give them a toothbrush and teach them how to take care of their teeth.

“That was really meaningful. People feel like there’s an awakening of what they can do.

"Where so often in brain injury the focus is on what I’ve lost, Silverlining really tries to shift that to ‘Hey, but you’re alive, and you must be here for a reason. What can you do to make a difference?’”

While Silverlining is making great strides in helping to change the outlook and positivity of brain injury survivors themselves, Sherrie admits there is work to be done in society as a whole in changing the

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perceptions of what roles they can play.

“I worked with a medical student who had a brain injury during a simple medical procedure where it went wrong. Her brain injury was quite severe but she was determined to get back to work.

“One day, we finally got her into a volunteer post. She called me a week later, saying ‘Sherrie, I'm going to quit. I can't sit in the corner and shred papers for the rest of my life.’ One of the sad things about that was that she was labelled as lazy by her colleagues, which was terribly sad because she was probably working ten times harder than anyone else.”

While running a charity which helps people with brain injuries is never without its challenges, Silverlining’s focus on the ongoing support it provides to members is proving central to its success.

“Because of the group support and experience, we

I am going to quit.

I can't sit in the corner and shred papers for the rest of my life

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have not had as many behavioural problems as you might have expected. If you'd asked me 12 years ago, I would have expected a lot more behavioural outbursts,” she says.

“We have to make sure we have the right amount of volunteer support to make sure that we understand the triggers, we manage them and keep everybody safe.”

Currently, the charity is self-funded, with members and their families being a great fundraising resource, although it is looking to access more funding to enable its work, and crucially, opportunities for those who need them, to continue.

Sherrie, who combines running the charity with her full-time job, says: “We’ve never had a bit of Government funding, it’s all been Silverliners and their families who have done walks, runs, cake sales, bake sales, quiz nights.

“We are currently doing research on the effectiveness of our different interventions so that in the future, we hope to be able to prove what we're doing is useful and get greater funding sources to do more.”

E VE NT S

DATES FOR YOUR DIARY

12 Cygnet Health - Cygnet Pindar House, Barnsley Grand Opening.

Barnsley, South Yorkshire.

See more on www.ukabif.org.uk.

To list your event in NR Times contact andrew@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.

JAN 20 30 1st MENA Region WFNR Congress.

Abu Dhabi, United Arab Emirates.

See more at www.infoplusevents.com.

FEB 20 05-08 2020 INS Denver Meeting.

Neuropsychology in the era of precision medicine. Denver, Colorado. www.the-ins.org

24 - 26 ESO Edinburgh Stroke Research Workshop.

Formerly known as the Edinburgh Stroke Winter School, the event aims to help new or aspiring clinical academics develop answerable research questions.

It will concentrate on the first three steps of developing a research project: defining your research question; choosing the best design; and presentation to potential funders and collaborators. The Workshop is supported by the European Stroke Organisation (ESO) and the UK Stroke Association. The University of Edinburgh. www.ed.ac.uk

27 Workshop on Drug Delivery to the Brain 2020.

The event will comprise inspiring presentations, followed by discussions around potential new collaborative research projects and the development of ideas for grant proposals. Edinburgh.

Book a spot at www.nottingham.ac.uk.

MAR 20 17 - 18 The European Neuro Convention 2020.

Europeâ&#x20AC;&#x2122;s only trade show for brain and spine experts. The event provides the most up-to date research, data and developments that will enable better patient outcomes, efficiency and cost effectiveness within neurology. The event provides a unique platform for 3,500 neurologists, therapists, physiotherapists, and commissioning groups to discover the latest innovations currently revolutionising the industry, and hear expert guidance through inspiring CPD accredited seminars, transforming diagnostics, monitoring, rehabilitation, mental health, and brain stimulation. Hall 20 at the NEC, Birmingham. See more at www. neuroconvention.com.

26 Child Brain Injury Trust Conference 2020 - Finding Rehab (pathways and strategies).

Event brings together partners, supporters and families to consider the rehabilitation pathways for children and young people affected by ABI. Edgbaston Conference Centre, Birmingham, West Midlands.

See more at: www.childbraininjurytrust.org.uk.

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CLOC K IN G OFF

Stretching the truth People who tell little white lies in the dating game may now have a genuine excuse. For a study has shown that their deception may be backed up by science.

Researchers have concluded that the brain is wired to tell lies to someone you view as a potential sexual partner.

"When the possibility of sex looms, people are more likely to change their attitudes and engage in deceptive self-presentation," said researchers at the University of Rochester and the Interdisciplinary Center Herzliya in Israel.

Over 600 participants took part in a study which showed that people are more likely conform to someone else’s view if they think it will help them get that person into bed.

Food for thought

Sound science?

Brain drain

Happiness, healthy eating and regular exercise are all things associated with a long life. And now researchers at Harvard Medical School have something else to add to this list. Their study suggests that not overthinking things could also help to keep you on the planet for longer.

Researchers tested brain samples from people who had died in their 60s and 70s and compared them to those of people who had lived to be over 100.

The results showed that those who died at younger ages had significantly lower levels of a protein called REST (RE-1 Silencing Transcription), which quietens brain activity. In other words, excessive thinking causes excessive brain activity, leading to a depletion in the protein REST.

It may be increasingly marginalised by music streaming services, but the radio has one advantage over the likes of Spotify and Apple Music; that surge of excitement when your favourite song comes unexpectedly bouncing out of the blue. Now scientists with too much time on their hands have measured the speed at which we recognise our special tracks.

Researchers at University College London’s Ear Institute say it can take as little as 100 milliseconds to pick up on familiar pieces of music. Participants of their study listened to 100 small music samples and with the help of electroencephalography imaging, scientists found that the average time taken to identify recognisable music was between 0.1 and 0.3 seconds.

As any man will testify, certain parts of the body may shrink in icy conditions - including the brain, according to US researchers.

A crew of scientists on a long-term expedition to Antarctica saw a portion of their brains shrink, a side effect potentially related to them being in an isolated monotonous environment, according to a small-scale study. The study used magnetic resonance imaging (MRIs) to scan crewmembers’ brains before and after the polar expedition. On average, their hippocampus (the brain area crucial for memory) shrank by seven per cent.

Their brains were compared with healthy individuals with the same age and gender who didn’t go to the station.

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