NR Times issue Q3 2019

ISSUE 11 Q3 2019

FAILED AND FORGOTTEN in a nursing home near you WINGING IT The soaring success of the Flying Faculty

QUARTERLY

UNEQUAL OPPORTUNITIES

Hidden disability in the workplace

BOXING CLEVER

Trading blows with a cruel opponent

JUDGE ON TRIAL

Your courtroom questions answered

OUT OF CONTROL RRP £9.99

Escaping the neurological fallout of domestic violence

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

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WELCOME

EDITOR'S NOTE

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

Witnessing a loved one affected by a deteriorating condition can be a powerful motivator for helping others in the same situation.

I was reminded of this recently when JK Rowling donated around £15m to an MS research centre in Edinburgh, inspired by her mother who passed away with the condition in her forties. Of course, few people have finances on JK’s level to put towards tackling diseases - but many invest considerable amounts of other resources including innovation and perseverance.

In putting together this and recent editions of NR Times, I have found it remarkably common for the creators of rehabilitative technology and equipment to have done so initially to help a loved one. For a prime example among several in this issue see our feature on Japanese entrepreneur Takeji Ueda, whose first foray into invention was to help his disabled father. There are countless other such tales in our online archive of neuro-rehab devices, therapy services and equipment first conceived to support a family member’s recovery or fight for a more independent life.

Another trend witnessed this quarter is the increasingly cross-border nature of rehabilitation, in terms of research projects and in sharing ideas.

Nowhere is this more evident than at the Flying Faculty, which takes neuro-rehab experts around the globe to pass on their expertise to professionals in countries that need it most. In fact, there’s an international theme throughout this edition of NR Times. We feature neurotechnology pioneers from Asia and Europe who are helping people with complex disabilities to live as independently as possible. Thanks to research findings in the US, you’ll also find special reports on brain injuries and both domestic violence and boxing. One of America’s leading experts on disorders of consciousness also

tells us why his country is failing the unconscious who have a genuine shot at recovery. In the UK, matters covered this time out include workplace discrimination which is being experienced by a worryingly high number of people with neurological conditions. There are also updates from Britain’s private neuro-rehab providers and the nation’s legal framework through which the severely injured pursue justice. If all this leaves you wanting more, find us online for more updates and features from the world of neuro-rehab at www.nrtimes.co.uk.

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 Sarah Sinclair, Peter Jackson, Alan Parr

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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CONTENTS

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NEWS Dementia links, stem cells for brain injured babies, stroke updates and more

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UNEQUAL OPPORTUNITY Hidden disability in the workplace

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CHILDREN OF

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FAILED AND FORGOTTEN An American scandal in disorders of consciousness

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THE REVOLUTION Kids' tech in focus

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FLYING FACULTY Taking off with a great global collaboration

CONTENTS

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IN A SPIN An interesting segway in wheelchair engineering

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NEURODISABILITY An unrecognised risk factor for scurvy

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BOXING CLEVER Trading blows with a cruel opponent

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68 92

SECRETS SHARED Judge answers your questions on the inner workings of influential court

Out of control

COVER STORY

EVENTS Dates for your diary in the months ahead

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CLOCKING OFF Notes from the sidelines of neuro-rehab

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ANALYSIS Untangling dementia's links with head injury Study brings further understanding of long-term impact of traumatic brain injury.

A study published recently revealed new evidence linking a single traumatic brain injury (TBI) with increased dementia risk.

Scientists visualised “tangles” or clumps of the protein tau – associated with the onset of Alzheimer's and other forms of dementia - in people who had experienced a moderate to severe TBI 18 to 35 years earlier.

The study was small and early-stage, with only 21 brain injury cases and 11 healthy individuals studied.

But the findings made headlines, with results

providing further evidence that a single TBI could lead to brain damage decades later, despite individuals seemingly completing a full recovery in the aftermath of the trauma.

Tau tangles have been detected in the brains of patients in post-mortem examination - where findings suggest around one in three patients with a single head injury develop them.

Most commonly, they have been recorded in brains donated for studies into the impact of repeated blows in boxing, football and American football; largely

through research into chronic traumatic encephalopathy (CTE) and its implication in neurodegeneration in later life.

This was the first time, however, that scientists had captured them in living patients following a single blow to the head, using a new 'positron emission tomography' (PET) imaging technique. The findings showed that the TBI survivors were more likely to have tau tangles than members of a healthy group.

The research involved scientists at Imperial College London's (ICL) Dementia Research Institute and the University of Glasgow and was published in Science Translational Medicine.

Dr Nikos Gorgoraptis, the author of the paper, from ICL’s brain sciences department, said: “Scientists increasingly realise that head injuries have a lasting legacy in the brain and can continue to cause damage decades after the initial injury.

“However, up until now most of the research Continues on page 8

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ANALYSIS has focussed on the people who have sustained multiple head injuries, such as boxers and American football players. This is the first time we have seen these protein tangles in patients who have sustained a single head injury."

The study used a PET brain scan combined with a substance that binds to tau protein, called flortaucipir, to study the amount of tau protein in the brains of head injury patients.

While patients with head injury were found to be more likely to have tau tangles, the paper also showed that patients with tau tangles had higher levels of nerve damage, particularly in the white matter of the brain.

None of the healthy individuals had tau tangles.

Also, patients with higher levels of tau tangles did not necessarily have any reduction in brain function, such as memory problems, compared to patients with fewer tangles.

However, Dr Gorgoraptis adds that these tangles can develop years before a person starts to develop symptoms such as memory loss.

He explained there are still many questions to answer about the tau tangles and brain damage. He also believes the findings could lead to the development of new treatments.

"This research adds a further piece in the puzzle of head injury and the risk of neurodegeneration,” he said.

“Not all patients with head injury develop these protein tangles, and some patients can have them for many years without developing symptoms. While we know tau tangles are associated with Alzheimer's and other forms of dementia, we are only beginning to understand how brain trauma might lead to their formation.

“What is exciting about this study is that this is the first step towards a scan that can give a clear indication of how much tau is in the brain, and where it is located. As treatments develop over the coming years that might target tau tangles, these scans will help doctors select the patients who may benefit and monitor the effectiveness of these treatments."

Science’s understanding of tau tangles has accelerated in recent years as laboratories lead the fight against the world’s dementia crisis.

Earlier this year, researchers at Ohio State University in Columbus devised a

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This research adds a further piece in the puzzle of head injury and the risk of neurodegeneration

mathematical model to help explain the biological processes behind the formation and growth of tau tangles.

They started with a basic two-step model of tau aggregation; two tau proteins slowly bind together, then additional tau molecules attach themselves to the two proteins.

However, after studying tau tangles under a microscope, they also discovered another process which speeds their growth.

They found that short fibrils of the tau protein can attach themselves to each other to form longer ones, elongating a fibril more quickly.

Study co-author Jeff Kuret explained that “once a long fibril is broken up into little pieces, they can diffuse, facilitating their movement from cell to cell”.

The researchers now plan to further develop their model to account for the many complexities of the tau protein.

There are six isoforms of the protein, yet this study only used one, while various chemical processes, including phosphorylation, can further change the structure of the protein.

Another study breaking new ground on our understanding of tau tangles was published in August.

The research into brain samples of confirmed CTE cases among former American footballers, found correlation between the formulation of tau tangles and the number of years the individual played the sport.

Lead author Michael Alosco, of Boston University, found that years of football play correlated with tau tangle burden in the dorsolateral prefrontal cortex, a region known to shoulder early and severe burden of tau pathology in people with CTE. Men who played longer also had more severe white-matter rarefaction, a combination of white-matter loss and gliosis (a change of glial cells following central nervous system damage). Tau burden and whitematter pathology each contributed similarly, and independently, to the chances of a dementia diagnosis.

People with moderate to severe levels of white-matter loss or tau pathology had 1.69 and 2.65 times the odds of dementia, respectively, of their counterparts with mild amounts either pathology.

Read more on tau and brain injury: p28.

TECHNOLOGY sponsored feature

Making a stand for a better quality of life NR Times reports on the rising force of the stand-up wheelchair

Greater independence and several proven health benefits have contributed to growing global interest in stand-up wheelchairs, says C.Y. Cheung, founder of Wheelchair88...

His Malaysia-based firm produces four stand-up wheelchair models, which are sold internationally and are becoming increasingly popular.

Part of their appeal is the practical differences they can make to an individual’s life.

Using gym equipment, withdrawing from cash machines and reaching for high shelves in supermarkets are some of the weekly tasks made possible by being raised from a seating to a standing position.

Then there are the psychological differences; standing face-to-face and eye-to-eye with peers, loved ones and colleagues can improve mood, confidence and self-esteem, Cheung says.

The possible health benefits are perhaps the biggest draw, however.

Standing rather than sitting can improve blood circulation, heart and lung function, bowel

movement and bone density.

Reductions in muscle spasms, joint stiffness, tendon shrinkage and pressure sores are also reported among stand-up wheelchair users, according to Wheelchair88.

Wheelchair88 was founded in 2013 after Cheung’s father’s third stroke inspired him to create innovative solutions for people with mobility problems.

Its four models are the Leo II, Draco, Pegasus II and Phoenix II. The Leo II is the lightest standing wheelchair in the world at only 27kg, with a foldable backrest and detachable wheels, and is used by people who have two strong arms and mobility in their hands and fingers.

For people who only have fingers that are workable, the Pegasus II model is most suitable with its power assisted standing or sitting

position activated by just one finger.

The Phoenix II is a highly accessible, fully powered wheelchair, which allows recline of up to 25 degrees, with adjustable armrest height, headrest, seat depth, leg length and footrest angle.

The Draco model builds on this even further with its lie-down function, and is particularly popular with users with diabetes or swollen legs and feet, as well as those who need frequent naps during the day.

Cheung says: “In daily life standing up talking to people face-to-face and eye-to-eye can be important.

"Standing wheelchairs means not sitting down all day. They help to release stress.

"Meanwhile, for someone with bedsores, standing wheelchairs are ideal in aiding recovery by enabling users to stand as frequently as possible, for as long as possible. Also if you go shopping you can reach the high shelves yourself,” he says.

“Because users feel more comfortable, emotionally they feel better. Sitting down all day makes you feel very unhappy, when you can walk around, relax a bit, go out into the garden, it makes you feel better. So they feel happier.”

With the exoskeleton being seen as the only real comparison to the standing wheelchair, the latter is proving more accessible on both a price and durability front.

“Exoskeleton technology is still unstable. The user must still have two strong arms in order to move on their own legs. It's very costly, and there is still a chance of accidents,” says Cheung.

“Sometimes if you don't handle well, you can fall.

Your body has to lean forward, that’s not a good posture. These are only for users with a very strong upper body.

"Using a standing wheelchair, you have a knee strap, thigh strap, waist strap, chest strap, shoulder strap - so all kinds of straps. It depends on the user's capability, we can use as little straps as we want, but most of all they are comfortable.”

All four wheelchair models mentioned can be adjusted in terms of seat depth, leg length and foot plate angle (for stretching tendons while standing).

For more information on Wheelchair88’s range of standing wheelchairs, visit www.wheelchair88.com

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Doctors urged to wise up to covert spinal threat Failure to identify and treat a rare type of spinal injury is costing the NHS millions in compensation claims, experts warned recently.

Cauda Equina syndrome is a rare and severe type of spinal stenosis where all of the nerves in the lower back suddenly become severely compressed. It can be brought on by the simplest of movements. Red flag signs include nerve pain down both legs as well as pins and needles or numbness around the bottom or inner thighs.

According to the Royal College of GPs (RCGPs), doctors should be more alert to the condition.

Prof Helen Stokes-Lampard, chairwoman of the RCGPs, warned: “The vast majority of acute back pain and back problems will not be serious and can be safely managed through careful exercises or over-the-counter

painkillers, but if a patient experiences any of the red-flag symptoms for Cauda Equina syndrome, they should seek medical attention as soon as they can.”

If the condition is undetected for 24 hours, the damage to the Cauda Equina is such that the outcomes for patients are significantly worse.

The latest available figures cited by the BBC shows there were 981 surgical decompressions for Cauda Equina Syndrome in England alone in a single year (2010-2011).

The NHS estimates that Cauda Equina-related compensation claims were worth £68m in 2014 to 2016, with two thirds of this for delay or failure of diagnosis or treatment.

These figures do not include claims against GPs so the true cost is much higher; reportedly in the region of £150m to £200m a year.

JK Rowling makes £15.3m donation to neuro causes Harry Potter author JK Rowling has donated £15.3m to the University of Edinburgh to help improve the lives of people with MS and other neurodegenerative diseases.

The funds will be used to support vital research projects and to build new facilities at the Anne Rowling Regenerative Neurology Clinic, which was launched via a previous donation from Rowling in 2010.

Rowling’s mother Anne died of MS at the age of just 45.

The author said: “When the Anne Rowling Clinic was first founded, none of us could have predicted the incredible progress that would be made in the field of regenerative neurology, with the clinic leading the charge.

"I am delighted to now support the Anne Rowling Regenerative Neurology Clinic into a new phase of discovery and achievement as it realises its ambition to create a legacy of better outcomes for generations of people

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with MS and non-MS neurodegenerative diseases.

"It's a matter of great pride for me that the clinic has combined these lofty ambitions with practical, on-the-ground support and care for people with MS, regardless of stage or type.

I've heard at first-hand what a difference this support can make. I am confident that the combination of clinical research and practical support delivered by Professor Siddharthan Chandran and his exemplary team will create a definitive step-change for people with MS and associated conditions."

Rowling's donation is designed to help secure the aid of top researchers looking into a cure for MS. Prof Chandran, director of the clinic, said: "This incredibly far-sighted and generous donation will unlock the potential of personalised medicine for people with MS in Scotland and further afield."

TECHNOLOGY sponsored feature

CarePlanner's national home care revolution gathers pace Home care management and rostering software CarePlanner has passed a key milestone as its popularity among domiciliary care providers continues to grow.

The platform, which enables home care providers to more efficiently manage and support their staff and oversee appointments, has gained its 1,000th customer.

CarePlanner is a complete staff rostering and management system for domiciliary care providers, including those who support people with complex disabilities caused by brain and spinal injuries and neurological conditions.

Users are able to realise significant efficiency savings on a wide range of tasks such as communicating with staff, monitoring mileage costs and booking appointments.

It provides one easy-to-use system, from scheduling calls through to invoicing; simplifying, automating and even sending alerts to reduce human error in both the management and delivery of care.

It therefore allows for more focus on provision of quality home care for vulnerable people and less on admin.

The platform can be accessed securely from any web browser and also has an Android and iOS app.

CarePlanner was founded in 2012 as a bespoke software provider to a handful of care firms, but is now used by providers across the UK including its newest – and 1,000th

– customer, Gateway. The Inverness-based charity provides supported accommodation to around 50 vulnerable adults and supports an average at any one time of 100 people in their own homes or living in care homes.

It started out in 1998 providing shelter to people sleeping rough on the streets of Inverness but now employs 90 people, plus additional part-time staff and support workers.

With Gateway on board, CarePlanner now has 17,700 admin users and supports 50,326 active carers, while 59.3 million appointments have been booked via the system to date.

CarePlanner provides users with a full audit trail of who did what and when in the system.

Features include drag and drop rostering, invoicing and payroll, travel calculations, call monitoring, reporting, a mobile app for carers, communications and record keeping.

It is also customisable, has various security features and several third-party integrations.

Managing director Matt Sharp (pictured above with staff at Gateway) says: “Our technology is driving a revolution in care quality, enabling agencies to achieve more with less, improving accuracy and the quality of care given.

"Many CarePlanner users are able to save days

of administration time each week, freeing up care staff to focus on delivering the very best level of care they can.

"We believe in providing domiciliary agencies with the best possible tools to achieve outstanding quality care.

"We are hugely grateful for the support from our loyal customers but we'll never sit back and rest.

"We're already progressing with a wealth of new features in the pipeline to serve the needs of a sector that is more in demand, and pressured, than ever before," he adds.

For more information on CarePlanner visit www.care-planner.co.uk, email info@ care-planner.co.uk or call 0117 332 5800.

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Could stem cells revolutionise baby brain injury care?

A US$5m research project in the US is exploring the use of stem cells in helping babies who are brain injured at birth.

The California Institute for Regenerative Medicine has awarded nearly US$5m to Dr. Evan Y. Snyder, a professor at the Sanford Burnham Prebys research facility in San Diego.

The funding will allow Snyder to complete pre-investigational new drug-enabling studies, a step toward securing US FDA approval of a human trial for neural stem cells as a potential treatment for newborns who experience oxygen and blood-flow deprivation during birth.

The resultant perinatal hypoxic-ischemic brain injury (HII) can cause cerebral palsy and other permanent neurological disorders.

“In the past 25 years that I have worked with these critically ill newborns, the only treatment advance for HII has been

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therapeutic hypothermia, or whole-body cooling, to prevent brain damage,” says Snyder.

“When my lab first isolated human neural stem cells in the 1990s, I immediately thought of their potential to help these children.”

Of every 1,000 babies born in the US, two to four experience HII. "Possible causes range from umbilical cord compression and disrupted maternal blood pressure to early separation of the placenta from the uterus.

Standard treatment includes therapeutic hypothermia, breathing assistance and life support. Approximately 10 to 20 per cent of affected infants develop cerebral palsy, epilepsy, an intellectual disability or additional permanent neurological disorders.

The subsequent lifelong medical and rehabilitative care is estimated to cost US$1m per child. Indirect costs based on the impact

on family dynamics are estimated to be two to five-fold greater.

“We hope to protect a subset of newborns from developing more serious neurological conditions by focusing on the brain cells that are simply stunned, not destroyed, from the insult – and hence potentially salvageable,” says Snyder. “If we augment the injured area with neural stem cells, we may be able to restore some balance to the injured region. We might be able to rescue some of the nerve cells that are hanging on the precipice between life and death, and perhaps help infants reach their developmental milestones.”

Snyder first isolated human neural stem cells in 1998, a landmark discovery for the stem cell field. Over the past two decades, human neural stem cells have been tested extensively for their therapeutic potential.

They have been studied in animal models of Parkinson’s, MND, spinal cord injury and childhood neurodegenerative diseases.

Related human neural stem cells have been evaluated in clinical trials for adult brain tumours.

“These cells are exceptionally well characterised,” says Snyder. “We know that they are drawn to injured regions like a magnet, we know they make a cocktail of healing factors and we know they soak up toxins in damaged areas. These characteristics make them very promising therapies, particularly for the developing paediatric brain.”

The US$5m grant will allow Snyder and his team to conduct animal studies to determine the optimal dose, location and timing to introduce neural stem cells to rescue at-risk brain cells.

At the end of the project, which is anticipated to take 2.5 years, Snyder plans to present to the FDA. He hopes to next launch a phase 1b/2a clinical trial in newborns with HII to evaluate the neuroprotective effects of human neural stem cells.

“Today, we cross an important threshold,” he says. “We are one step closer to a future where we may be able to protect some newborns from an unanticipated birth injury – and help parents give their children the best possible start in the world.”

Read more on baby brain injuries on p18.

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Small changes can make big difference to stroke risk Most strokes can be prevented with just a modest, but sustained, decrease in blood pressure and cholesterol, researchers say.

A study has found that long-term exposure to the combination of both lower low-density lipoprotein cholesterol (LDL-C) and lower systolic blood pressure (SBP) is linked to a reduced lifetime risk of cardiovascular disease.

The relationship is dose-dependent, meaning that any combination of lower LDL-C and lower SBP was associated with a corresponding reduction in lifetime risk.

Even small declines in LDL-C and SBP can substantially diminish the likelihood of ever having a heart attack or stroke, the study shows.

For example, the combination of 0.3 mmol/L (14 mg/dL) lower LDL-C and 5 mmHg lower SBP was associated with a 50 per cent lower lifetime risk of cardiovascular disease.

Principal investigator Professor Brian Ference of the University of Cambridge said: “Healthy eating and physical activity are

effective ways to improve cardiovascular health.

“The best diet or exercise programme differs for each person.

"It is the one that produces the greatest reductions in both blood pressure and cholesterol for that person and to which he or she can adhere because the benefits of the reductions accrue over time.”

He added that the small modifications in LDL-C and SBP required to reduce risk can be achieved by eating healthily, including by following the dietary approaches to stop hypertension (DASH) diet.

This is a lifelong approach to healthy eating designed to help treat or prevent high blood pressure.

Larger reductions in LDL-C and SBP with more aggressive lifestyle changes or other therapies can reduce lifetime risk of cardiovascular disease by 80 per cent and

cardiovascular death by more than twothirds (68 per cent).

The study included 438,952 participants of the UK Biobank who experienced a total of 24,980 major coronary events (defined as the first occurrence of non-fatal heart attack, ischaemic stroke, or coronary death).

The average age was 65.2 years and 54 per cent were female.

The researchers used genetic variants linked with lower LDL-C and SBP as instruments to randomly divide participants into groups with lifetime exposure to lower LDL-C, lower SBP, or both as compared to a reference group.

The best diet or exercise programme is the one that produces the greatest reductions in both blood pressure and cholesterol

They then compared the differences in plasma LDL-C, SBP and cardiovascular event rates between the groups to estimate associations with lifetime risk of cardiovascular disease.

Ference said: “It is important to encourage patients and populations to invest in their future health. Maintaining even small reductions in both LDL-C and SBP for prolonged periods of time can pay very big health dividends by dramatically reducing the lifetime risk of cardiovascular disease.”

The results were presented at the European Society of Cardiology Congress 2019 and published in the Journal of the American Medical Association.

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Nuts linked to reduced stroke threat Eating nuts at least twice a week reduces the risk of death from stroke and other cardiovascular events by 17 per cent, researchers claim.

An Iranian study has examined links between nut consumption and the risk of death by cardiovascular disease, including stroke and heart attack.

A total of 5,432 adults aged 35 and older with no history of cardiovascular disease

were randomly selected from urban and rural areas of the Isfahan, Arak and Najafabad counties of Iran.

Intake of nuts including walnuts, almonds, pistachios, hazelnuts, and seeds was assessed in 2001 with a validated food frequency questionnaire.

Participants or family members were interviewed every two years until 2013 for the occurrence of cardiovascular events and death.

The specific outcomes investigated were coronary heart disease, stroke, total cardiovascular disease, death from any cause and death from cardiovascular disease.

During a median 12-year follow-up, there were 751 cardiovascular events (594 coronary heart disease and 157 stroke), 179

cardiovascular deaths, and 458 'all-cause' deaths.

Eating nuts two or more times per week was associated with a 17 per cent lower risk of cardiovascular mortality compared to consuming nuts once every two weeks.

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US steps up search for new stroke treatments The US medical research authority the NIH is developing a US$4m network of labs to work on new stroke treatments.

The body is funding a nationwide preclinical trial platform designed to test novel treatments for acute ischemic stroke in rodents.

Seven labs will work together, as part of the Stroke Preclinical Assessment Network (SPAN), to employ clinical research practices while assessing the effectiveness of six potential neuroprotective therapies in reducing ischemic brain injury.

The network will be funded with US$4m over the next three years.

“Our primary goal is to identify the most

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promising treatments for testing in patients with clinical trials,” said Walter J. Koroshetz, director of NIH’s National Institute of Neurological Disorders and Stroke, which supports SPAN. “In the long term, we hope that this approach will increase the chance of success in pairing a brain-saving treatment with the current practice of clot removal used to treat patients with potentially fatal or disabling stroke.”

Ischemic stroke, a leading cause of disability and the fifth leading cause of death in the US, happens when an artery in the brain becomes

blocked, often by clots, and blood flow is stopped.

Current treatments aim to remove clots either by dissolving them with injections of the blood thinner tissue plasminogen activator or by direct extraction from the blocked blood vessel.

While both treatments help patients recover, preclinical studies have suggested that there are several therapies that could potentially protect the brain against damage that occurs prior to or during successful reopening of the blocked blood vessel.

However, it is not known whether any of these therapies will work in humans and many industry-funded trials failed during the 1990s before effective clot removal became a common treatment.

“While we’ve made lot of progress in helping patients recover from ischemic strokes, studies in the lab suggest we can do more,” said Patrick D. Lyden, the Carmen and Louis Warschaw Chair in Neurology at Cedars Sinai Medical Center, Los Angeles, and the lead

investigator of the coordinating centre of the SPAN trial.

“Over the years several labs have shown that therapies used for other diseases could also be repurposed to help patients recover from an ischemic stroke attack,” he added.

Recent studies have shown that most promising preclinical ideas for treating strokes and other diseases often cannot be replicated in other labs and fail when researchers try to test or translate them into treatment for humans.

To address these concerns, NIH has worked with scientific journals on a project called Rigor and Reproducibility to make standards for publishing preclinical research results more like those used for clinical trials.

“This SPAN trial will take the principles laid out in NIH’s Rigor and Reproducibility

guidelines one step further,” said Francesca Bosetti, programme director of the stroke and brain disorder institute NINDS. “The network will use clinical trial practices and standards to search for the neuroprotective stroke therapies that have the greatest potential for working in humans.”

Specifically, SPAN researchers will test the effectiveness of six therapies for protecting the brain before and during clot removal after an ischemic stroke.

The therapies have been approved by the US Food and Drug Administration for treating other diseases, such as cancer and multiple sclerosis. All the experiments will be performed on rodents using the transient middle cerebral occlusion model of ischemic stroke. The trial will follow several

critical clinical research practices such as randomisation of treatments, large test sizes, blinded analysis and attempts to reproduce results in other network labs.

The results will help researchers decide whether any of these therapies should be examined with Phase II clinical trials, which test in patients the efficacy or expected biological effects of a new drug as well as the risk of harmful side effects.

In the future, SPAN may work towards further trials on novel treatments for stroke patients.

“These labs have produced a lot of great ideas and promising preliminary data. It is our duty to patients to develop a system that rigorously tests and translates those ideas more effectively from bench to the bedside,” said Dr. Koroshetz.

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Heart monitoring must be improved - brain injury report NHS report calls for urgent changes on maternity wards to reduce brain injuries sustained in labour.

Inadequate fetal heart monitoring is a major contributor to brain injuries sustained on maternity wards, an NHS report has warned.

The NHS Resolutions report concludes the findings of its investigations into cases of babies born with a potentially severe brain injury following labour, at term, which were reported to the NHS body under a new Early Notification Scheme. The scheme, in place since April 2017, aims to give families quick answers to questions about what may have gone wrong with the care they received, provide support and, if appropriate, award compensation without delay. It is part of a government plan to halve rates of stillbirths, neonatal/maternal deaths and brain injuries linked with birth by 2025 and covers 129 trusts in England.

The new report looked at 96 serious cases of 197 investigated for liability.

It found problems with checking fetal heart

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rates during labour was a factor in 70 per cent of cases, with delays in giving birth noted in 63 per cent of cases. These included delays in transfers to labour wards, admission to theatres and pain relief administering. The report also warns that "immediate neonatal care and resuscitation remains an important but an under-recognised factor that limited support for staff and families not being involved sufficiently".

Among several recommendations, it urges the implementation of "an evidenced-based, standardised approach to fetal monitoring in England". It says: "Effective improvement strategies for fetal monitoring require in-depth understanding of the social mechanisms underpinning the process, not just the technical issues. Research in this area should be prioritised urgently."

It also calls for an increase in awareness of

impacted fetal head and difficult delivery of the fetal head at caesarean section, including the techniques required for care.

"Research to understand the prevalence, causes and management of impacted fetal head is a priority, along with effective training in management techniques," it says.

Other recommendations include open conversations with families about their care and the investigation process, support, including psychological assessment, for NHS staff and increased awareness of the importance of the resuscitation and immediate neonatal care for newborn babies.

Dr Samantha Steele, lead author and national obstetric clinical fellow at NHS Resolution, said: "Having a baby should be a positive experience for families but sadly things do occasionally go wrong in maternity care with devastating effects.

"By carrying out early liability investigations, we can improve the experience for families and staff affected, provide early support and reduce formal litigation in the courts and the associated legal costs. Proximity to incidents also enables time relevant learning to be identified and shared at a national, regional and local level."

Gill Walton, chief executive of the Royal College of Midwives (RCM), said: "Every incident of avoidable harm leaves families devastated and affects midwives and maternity staff. Included in the report are recommendations around how women and their families are treated when things go wrong and also how staff can be supported which is something the RCM really welcomes.

For the vast majority of women and their babies, the UK is a safe place to give birth.

However, despite the fall in stillbirth and neonatal mortality, avoidable incidents do happen.

"We want women and their babies to receive the safest possible maternity care so it’s vital we enable learning for improvements to safety and to reduce avoidable deaths."

Health minister for maternity and patient safety Nadine Dorries, said: "We’re determined to continually improve how we support affected families and ensure the NHS can learn immediate lessons to avoid future harm."

LEGAL sponsored feature

Do you need capacity to use the internet and social media?

By Charlene Hughes, associate solicitor at Boyes Turner

The internet and social media have transformed the way we communicate with each other in recent years. Arguably the biggest difference has been felt by people who would otherwise find talking with others hugely challenging; including those with certain disabilities and/or social difficulties…

But the internet can be a dark place with illegal material readily accessible.

Internet abuse is common place and can take many forms including bullying, sexual grooming and personal identity theft. In the recently reported case of Re A (Capacity: Social Media and Internet Use: Best Interests) [2019] EWCOP2), the Court of Protection sets out the information P must be able to understand, retain, use and weigh up to have capacity to access the internet and social media safely.

Background P is a young adult and identifies as a gay man.

P had learning difficulties with low levels of literacy. He resided in a supported living placement where he received extensive support.

Without support, P would be unable to manage his personal and domestic care needs.

What was the case about?

Court of Protection proceedings had been instigated by the local authority when concerns emerged about P’s capacity to make decisions about his residence, care, contact with others and internet use.

Concerns had been raised about P’s internet use.

He had shared intimate photos with unknown men on social media and had accessed extreme pornography and images of child abuse. P had also made contact with sex offenders. The police were concerned P could commit offences of unlawful distribution of images due to his lack of understanding. Practical steps had been taken to help P understand the issues, without success.

The Court’s decision The Court was asked to consider whether it was in P’s best interests to restrict his use of the

internet and social media. In assessing whether P had capacity to weigh up the risk involved, the judge applied the criteria set at section 3(1) (a) of the Mental Capacity Act 2005.

The judgment sets out the relevant information which P needs to be able to understand, retain, use and weigh.

For example: “Information and images (including videos) which you share on the internet or through social media could be shared more widely, including with people you don’t know, without you knowing or being able to stop it.”

The issue of whether someone had capacity to engage in social media for the purposes of online contact should be considered separately from any consideration of who that person should have contact with generally.

However, when assessing capacity to access the internet safely there should be a universal test covering use of the internet to contact others as well as using the internet for other purposes such as entertainment or education.

Having considered the evidence available, the judge was satisfied that P did not have capacity to use the internet or social media. This is not just ‘unwise’ behaviour.

As a result, the Court approved the local authority’s plan for P to have limited access, under a degree of supervision, to the internet.

On the other issues, the judge decided that P had capacity to decide on his residence and consent to sexual relations but that he lacks capacity to litigate, in relation to his care and support package and contact, and in the management of his property and finances.

What if I have concerns about a vulnerable person?

Although this case concerns a young adult, the criteria for accessing the internet and social media safely will be relevant to other vulnerable groups including the elderly.

Our specialist Court of Protection team has a wealth of experience in supporting individuals who lack capacity and their families.

If you have any queries or questions about capacity and deputyship please contact our Court of Protection team by email on cop@boyestuner.com.

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TBI could be playing a major role in veteran suicide rate Veterans who have suffered a traumatic brain injury (TBI) are more than twice as likely to commit suicide as their fellow veterans, a study shows.

The annual suicide rate for US veterans with a TBI was measured as 86 out of 100,000 ‘person years’, versus 37 out of 100,000 for those with no previous TBI diagnosis.

Person years factor in both the number of people in a study and the amount of time each person spends in it.

In this case, sample data was taken from the Veteran’s Health Administration (VHA) and the National Death Index between 2005 and 2015, alongside more than 1.4 million US military veterans’ electronic medical records.

Firearms were the leading means of suicide for both TBI and non-TBI veterans with 68 per cent of the case studies indicating the use of a gun.

Among TBI cases, 78 per cent of veterans used a firearm as a means to suicide.

US firearm regulations set by the Brady Handgun Violence Prevention Act in 1993 do not account for those who have been medically diagnosed as suffering a brain injury. The University of Colorado’s research team reported: “These findings underscore the importance of understanding veterans’ lifetime history of TBI to prevent future deaths by suicide and support the implementation of screening initiatives for lifetime history of TBI among all individuals utilizing the VHA.” Earlier this year, the Danish Institute for Suicide Preventions’ reported its findings that one in 20 suicides could be as a result of brain injury.

Study reveals hardship faced by UK stroke survivors Thousands of people in the UK have had to sell their home after having a stroke to make ends meet, new data suggests.

Almost half (43 per cent) of all stroke survivors in the UK aged under 65 face financial hardship as a result of their stroke, according to a study.

The Stroke Association’s Lived Experience report estimates that some 12,000 stroke survivors under 65 have had to sell their home amid rising costs and lower income after a stroke.

The findings show that 51 per cent of

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stroke survivors aged under 65 have to give up work or reduce their working hours following their stroke.

One in six say they have experienced discrimination, missed out on a promotion or faced an unsupportive employer.

Meanwhile, only 10 per cent have accessed benefits or a financial advice service.

The study iss the second of four chapters in the Lived Experience report, which is

Meanwhile, a 2017 report (Palladino, 2017) aimed to gauge the suicide risk of US veterans who were homeless and had experienced a TBI. Using US Department of Veteran Affairs data, with adjustments for age and sex, suicide risk in veterans was measured as 22 per cent higher than the general adult population.

based on over 11,000 responses from people affected by stroke.

Juliet Bouverie, chief executive of the Stroke Association, said: “Life changes instantly after a stroke, and the condition can have a huge cost, not only to people’s finances, but also to their health, independence and relationships.

“But not enough people realise the wider impacts that stroke can bring. Overnight, a partner becomes a carer. A breadwinner becomes jobless.

“These latest figures show that many stroke survivors are facing a life on the edge of poverty; many have had to give up work, and in some cases, face discrimination from their employers. This comes at a time when financial worries should be the last thing on their minds.”

There are currently over 1.2 million stroke survivors in the UK, with a quarter of strokes happening to people of working age.

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MND charity delivers benefits warning to Number 10 Representatives of the Motor Neurone Disease Association handed a 55,000-name petition to the government demanding changes to the benefit rules for people with a terminal illness.

The document, delivered to 10 Downing Street, urges the government to give people with a terminal illness easier and quicker access to the benefits they are entitled to.

Currently, unless a medical professional signs a form saying the person has six months or less to live they are forced through a laborious process of form-filling, interviews and assessments.

David Setters, who is living with MND, and consultant neurologist Dr Nik Sharma were among those who delivered the petition; as was Downton Abbey actor Jim Carter.

The MND Association believes everyone diagnosed with a terminal illness – whatever their life expectancy – is entitled to access the fast-track process, which can cut the wait for

Parkinson’s and MS research head into orbit A recent research project on the International Space Station harnessed low gravity conditions to investigate what triggers the beginning stages of Parkinson’s and MS.

Scientists explored the relationship between nerve cells and immune cells in the brain which seem to play key roles in the onset of both diseases.

These include neurons and the cells that form them, creating the body’s nervous network and allowing the brain to monitor and control it; and microglia – immune cells which patrol the brain, defending neurons from threatening invaders.

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Led by the New York Stem Foundation Research Institute, researchers launched newly created diseased and healthy cell samples into space to observe them away from the Earth’s gravitational pull.

One sample held the cells of a Parkinson’s patient and a healthy person of a similar age.

The second, had the cells of an MS patient and an age-matched healthy donor. A tubing and

benefits by weeks and sometimes months.

David Setters said: “We are not asking for money, we are simply asking for fast-track access to the benefits people with terminal illnesses need and are entitled to so that affected families don’t have to waste time fighting the system.”

In July, the then-work and pensions secretary Amber Rudd announced a review into benefits for the terminally ill.

While this was encouraging, the MND Association wanted assurances that the review would happen quickly.

Actor Jim Carter said: “Every day 10 people die while waiting for the benefits they need.

That can’t be right – and is why I’ve signed the petition along with tens of thousands of other people across the UK who are urging the government to end the cruel benefit system for dying people.”

pump system automatically provided liquid food to the cells inside their chambers.

Valentina Fossati from the New York Stem Foundation Research Institute said: “The microglia are found in every part of the brain, and it’s really starting to look like neurodegenerative illnesses develop because the cells begin behaving improperly or overreacting. Misbehaving microglia may contribute to killing the neurons.”

The cell samples aboard the space station were stored inside a facility called CubeLab, which is designed specifically for microgravity research.

Inside it, there was a camera to allow observation on the 96 chambers holding the cells.

“This is the first time anyone has researched the effects of microgravity and spaceflight on such cells,” said Andres Bratt-Leal of Aspen Neuroscience.

“We know that forces can influence the behaviour of cells by changing aspects such as their shape. So, what happens when you remove gravity?

“How the cells respond will tell us new things about how they function.”

Fossati and Bratt-Leal observed the cells for 30 days from Earth, analysing how the microglia cells responded to the healthy cells. The results are due imminently.

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Facial recognition problems thwart TBI recovery – study Problems reading facial expressions after a brain injury can prevent individuals reintegrating into the community during their rehabilitation, a new study suggests.

Researchers have found a correlation between deficits in facial emotion recognition and poor community integration in individuals with moderate to severe traumatic brain injury.

Their findings have implications for the development of rehabilitative interventions to reduce social isolation in this population, improve outcomes, and increase quality of life.

Among people with moderate to severe traumatic brain injury, social isolation is prevalent, and contributes to poor rehabilitation outcomes.

Social isolation manifests as lack of community integration, which comprises the home, social

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settings, and educational and employment settings.

Despite the importance of community integration to individuals and their families, the barriers and facilitators to community integration are poorly understood, and targeted interventions are needed.

One potential barrier to community integration is impairment in the ability to accurately identity facial emotions, a deficit that leads to difficulties in social interactions.

A study backed by the US-based charity the Kessler Foundation compared two groups of participants; 27 with moderate to severe

traumatic brain injury and 30 healthy controls.

All participants completed a questionnaire to examine community integration and two tests of facial emotion recognition.

The TBI group reported lower levels of community integration compared to the healthy control group. Importantly, those individuals who had lower performance on the facial emotion recognition task displayed reduced integration into the community.

“Our findings suggest that deficits in facial emotion recognition may contribute to the social isolation experienced by so many people with traumatic brain injury,” researcher Dr Helen Genova said.

“By incorporating appropriate interventions to improve facial emotion recognition into rehabilitative care, we may see improvement in community integration, and increases in quality of life for both individuals and their caregivers,” she added.

The study, “Community integration in traumatic brain injury: The contributing factor of affect recognition deficits,” was published in the Journal of the International Neuropsychological Society.

INSIGHT sponsored feature

A brief introduction to Alcoholics Anonymous

By Dr Mani Mehdikhani, CPsychol, PGDip, MPhil, BSc (Hon) Clinical Psychologist and Non-Alcoholic Trustee, General Service Board of Alcoholics Anonymous Great Britain.

Alcoholics Anonymous (AA), though not without controversies, remains the most widely available, accessible and durable mutual aid recovery programme in the world. Though there is little research published on the neurobiology of recovery, existing research literature focusing on ‘active ingredients’, there is a vast body on the the neurochemistry of addiction that has lent credence to the ‘Disease Model’ concept.

AA views alcoholism as a progressive illness, and whilst scientific discourse on the disease model sought and failed to combat the stigma around addiction, AA has arguably succeeded

by instilling hope in changing the narratives of recovering alcoholics through its Three Legacies of Recovery, Unity and Service.

Alcoholics Anonymous is a mélange of philosophical and theoretical influences which in turn influenced many other treatment and recovery approaches.

Whilst erroneously viewed by some as a ‘religious cult’, it views recovery as rooted in spirituality (as opposed to religiosity per se) which George Vaillant pointed out “like human attachment – both mediated by limbic circuitry and the temporal lobe – may be a worthy

substitute” for alcohol.

Consistent with the neurobiological view of social attachment and oxytocin as possible protective factors in addiction, unity and service within the AA tradition can be understood as selfless, ego-stripping, democratic and consensus-based approaches that promote social attachment and building of connections. Even underappreciated practices e.g. the ritual of holding hands in a circle reciting the Serenity Prayer at the end of some meetings, play a small role enhancing social cohesion.

Myths about AA can evoke strong reactions in some scientific circles, but at its heart is the idea that one alcoholic can help another alcoholic, and as professionals we have an ethical and moral obligation to at least show respect and openness towards resources that clients find helpful in dealing with a condition that is a matter of life or death.

email: help@aamail.org

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MS register gets £1m funding boost A UK study which aims to collect game-changing data about life with MS has received £1m in investment from the MS Society.

The UK MS Register, based at Swansea University, was established in 2011 as the first nationwide register of its kind.

It seeks to gather information from people with MS about what it’s like to live day-to-day with the condition.

This information provides rich, anonymised data for the purposes of medical research, which could unlock some of the mysteries behind the disease.

Data is collected through self-reported outcomes from people with MS via website surveys; plus clinical records from 47 NHS partner sites and other routinely collected data from health and wellbeing services, including GPs. The MS Society has remained the principal funder since its inception.

Susan Kohlhaas, director of research at the

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Big data will revolutionise our understanding and treatment of diseases

charity, says: “We continue to be incredibly excited about the potential the register holds in transforming our understanding of MS. Data science is an area that we as a country need to build capacity in… big data will revolutionise our understanding and treatment of diseases.”

The new investment will help the register to expand, including by increasing the amount and type of data it is able to collect.

A new interface will also be developed for clinicians at its 47 partner NHS site locations.

This will allow specialists in MS to see how the condition is affecting the day-to-day lives of patients away from the clinic, becoming an important tool for discussion around treatment options and lifestyle.

Other technical advancements are in the pipeline in terms of the register’s ability to capture more complex data types like MRI scan data.

A ‘Machine Learning’ tool is also planned, to extract and organise information directly from clinician’s letters to ease any administration burden for NHS staff.

People with MS, or people acting on behalf of a person with MS, can sign up to the UK MS Register by visiting www.ukmsregister.org.

COMPANY NEWS sponsored feature

Lewis Reed (WAV) Ltd helps England powerchair footballer regain his independence England international powerchair footballer Chris Gordon is enjoying the independence of his very own VW Shuttle SE long wheelbase drive from vehicle thanks to Lewis Reed.

Chris was born with spinal muscular atrophy.

Over the years, the Gordon family has had various wheelchair accessible vehicles to enable them to go out as a family but as more and more of his friends passed their driving tests Chris wanted to do the same so started to look at drive-from vehicles.

“When you are younger, you don’t mind relying on friends and family to give you lifts but just because I am in a powerchair doesn’t mean I shouldn’t have the same independence as everyone else,” explained Chris.

As part of his powerchair football, Chris has a specialist powerchair which means when he is travelling to games with his day-to-day powerchair (which he drives from), his football powerchair, his kit and either his parents, friends or team mates all in the vehicle. So, in 2016 they decided to look for a new vehicle which would offer more space and allow Chris to continue to drive himself. After researching online, Chris got in touch with Lewis Reed who suggested a VW Shuttle SE wheelchair accessible vehicle “From the initial phone call, Lewis Reed were great. They brought a demonstration vehicle to me at home, and after a test drive I knew the VW Shuttle SE would be perfect! I love it, it is very easy to drive despite being quite large and the conversion and space drive

system are fantastic. I would not hesitate in recommending Lewis Reed to anyone looking for a WAV” concluded Chris.

Chris’s vehicle is fitted with a space drive system which operates wirelessly. The system incorporates two joystick controls, one to power the vehicle and accelerate / reverse and a second from which Chris steers.

The VW Shuttle SE driver vehicle generally comes with a number of seat arrangements to suit each individual allowing the wheelchair user to either drive from their wheelchair as in the case with Chris or transfer from the wheelchair to a driver seat using an electric six way seat or to choose to be an upfront or rear passenger. In Chris’s case, should he decide he no longer wishes to drive, all his passenger has to do is release Chris’s chair from the driving position and reinstate the original driver’s chair which sits behind the front passenger seat. Chris then secures himself and his chair into another space in the vehicle.

Lewis Reed is one of only three official Volkswagen WAV converters in UK. To achieve this certification from Volkswagen, Lewis Reed underwent an extensive audit to ensure it complied with VW’s Commercial and Technical Standards all of which it passed with flying colours. Covering all aspects of the conversion process from the initial design

and build through to after-sales support, the VW audit ensures every converted vehicle meets the exceptional standards for which all Volkswagen vehicles are synonymous.

For more information or to book a free home demonstration call 0151 343 5360 or visit: www.lewisreedgroup.co.uk.

You can also follow Lewis Reed on twitter (@lewisreedgroup) and Facebook(www. facebook.com/lewisreedwavltd).

NRTIMES 27

Tau study could boost child brain injury assessment The ability of clinicians to assess the severity of child brain injuries – and their likely long-term effects – could be transformed by new blood tests, researchers say.

A new study suggests that closer focus on levels of the protein tau in children with traumatic brain injury (TBI) could improve diagnosis, giving a clearer picture of the individual’s outlook.

Tau has long been associated with traumatic brain injury, with studies linking it to both acute symptoms and long-term complications.

It is also known to have a role in the onset of Alzheimer’s and Parkinson’s.

A new study has provided further evidence that levels of tau increase in children with brain injuries and could be used to gauge their severity.

It could also reduce the need for CT scans, amid some concerns about the potential impact of

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radiation and sedation on young children.

Australian charity the Murdoch Children’s Research Institute (MCRI) worked with Canadian scientists to analyse blood from 158 children who presented with head injuries at children’s hospitals in Melbourne, Toronto, Montreal and Vancouver from 2011 to 2013.

These patients were selected from a pool of 1680 children who presented with head injuries. Their results were compared with those of 416 healthy children.

The study aimed to assess whether levels of the blood biomarker tau could help clinicians to better understand the severity of brain injury in people under 18.

It is believed to be the first large-scale study

into tau concentrations in both healthy children and those with a traumatic brain injury.

MCRI’s clinical services director Professor Vicki Anderson says: “CT scans are used to diagnose brain injury but there are concerns about exposing children to radiation and young children often need to be sedated.

“Doctors can measure levels of the neuronal microtubule-associated protein tau and this indicates the severity of brain injury in adults.

However tau levels naturally fluctuate more in children so research was needed to test whether this would work.”

The study found that measuring levels of tau in older children gives doctors an indication of the severity of mild brain disorders, however more research is needed.

Anderson says: “Measuring tau levels will help us identify which children with brain injury will recover well and which will have the highest risk of ongoing problems and so require treatment, such as rehabilitation and ongoing support at school.

“Tau levels naturally fall in healthy children as they age but tau increases immediately after a traumatic brain injury.”

To use blood samples to assess the severity of child brain injuries, researchers first established what the normal levels of tau in children should be according to age.

They showed that tau decreases as children grow, with three significant age partitions, less than four years, four to 15 years and 16 to 19 years.

Future studies are needed to look at tau levels after the first day of injury and also to search for other biomarkers of brain injury.

According to the MCRI, TBI is the leading cause of death and acquired disability for children in high-income countries like Australia and Canada.

“Around 0.7 per cent of the child population is treated in emergency departments every year for traumatic brain injury, that’s almost one in a hundred children,” Anderson says.

“The leading causes of traumatic brain injury to children are falls, car crashes, sport and abuse.”

Prof Anderson was in the UK earlier this year, as a keynote speaker at The Children’s Trust’s national paediatric brain injury conference in London.

COMPANY NEWS sponsored feature

Precision Rehab to showcase powerchair range at the OT show With over 25 years’ experience in the assessment, sales and servicing of powerchairs, the Precision Rehab team work closely with the client, their occupational therapist, family members and anyone else who may be involved in their day to day care to ensure they get the powerchair which meets all their requirements.

“Every powerchair we supply is bespoke as every client is unique and I have always held the belief that the chair should fit the person as opposed to the person fitting the chair,” says founder Matthew James.

To be able to meet and accommodate the needs of some of the most complex disabilities, Precision Rehab works with some of the UK’s leading seating manufacturers such as Contour886 along with OT’s and other healthcare professionals during the assessment and design process of each powerchair to ensure the end product meets all the requirements of the client.

“Over the years we have worked with many people that have required a bespoke seating solution for their powerchair which we have been able to address thanks to our relationships with these manufacturers and healthcare professionals. We also believe in personalising each chair to reflect the personality of the client and this can include painted body covers to match everything from a nail varnish colour through to the correct shade of red for an ex fireman. Every powerchair we supply is truly bespoke and we are looking forward to showcasing our range on stand F21 at The OT Show on November 27th & 28th,” continued Matthew.

In addition to being the official supplier of the Paravan range of specialist powered wheelchairs for the UK and Ireland, Precision Rehab recently launched the groundbreaking ULTRA LS300 powerchair which

Above: The Paravan range of powerchairs Below: Matthew James (right) with Oyvind Braseth, Director, NHD and designer of the original Balder powerchairs

has been designed by NHD who were the original creators of the Balder powerchairs.

The minimum floor to seat height of just 300mm to 600mm is the lowest ever available on a powerchair, using the Dahl docking system the user can also drive their vehicle from the LS300. Complimenting the LS300 and Paravan range available from Precision Rehab are the Quickie Q range of

powerchairs from Sunrise.

Precision Rehab is always looking to embrace the latest technology and recently added the range of MO-VIS controls which includes the all new scoot attendant control to their list of suppliers. Fitted to the back of the powerchair, it has been designed to enable the user’s carer or family member to control various features of the powerchair including speed, manoeuvrability and lights. To ensure the attendant control is comfortable to use, MO-VIS has incorporated ergonomically designed handles and thumb controls and an LED display showing the battery life and current speed.

Precision Rehab is one of the UK’s leading suppliers of bespoke powerchairs and will be exhibiting several models from its extensive portfolio on stand F21 at The OT Show which takes place on November 27th & 28th at the NEC Birmingham.

To discuss the full range of powerchairs available from Precision Rehab or book an assessment please call 01256 300111, email: info@precisionrehab.co.uk or visit www. precisionrehab.co.uk

NRTIMES 29

Sheffield academics plot Parkinson’s breakthrough UK academics are aiming to develop a new Parkinson’s treatment that could protect brain cells affected by the disease, potentially slowing its progression, or even stopping it for the first time.

The University of Sheffield and the charity Parkinson’s UK are working together to modify a number of drug compounds that have been found to boost cell function in people living with Parkinson’s.

The project is led by Dr Heather Mortiboys and her team from the university’s Institute for Translational Neuroscience (SITraN) and its Neuroscience Institute.

Funding of £100,000 has been provided by the Virtual Biotech Programme – Parkinson’s UK’s drug development arm.

Dopamine-containing brain cells, vital for healthy coordination and movement, rely on

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energy-producing mitochondria to function.

In people living with Parkinson’s, however, the mitochondria are disrupted and the cells begin to fail and slowly die.

Mortiboys and her team have identified a number of drug compounds which could boost the function of these dopaminecontaining brain cells.

Their previous research utilised recentlydeveloped methods to grow these brain cells from the skin cells of patients with Parkinson’s disease, and importantly they developed a way to generate them in high numbers – something never achieved before

– to test the identified drug compounds on these patient-derived cells.

Researchers isolated a number of these compounds which were found to boost the mitochondrial function in these dopamineproducing brain cells and potentially reduce cell death; the cause of Parkinson’s symptoms such as loss of movement, tremors and rigidity.

Over the next 12 months, they hope to identify a lead molecule from the compounds which has the most beneficial effects on mitochondrial function of the brain cells.

They then hope to progress it along the drug discovery pipeline with partners at the National Institute of Health Research (NIHR) Sheffield Biomedical Research Centre.

It is hoped this new work will lead to the development of a treatment which will protect these brain cells, slow the progression of Parkinson’s and extend the quality of life for people living with the disease.

Mortiboys, says: “The partnership between our team and Parkinson’s UK could lead to a UK first in the development of treatments for Parkinson’s, putting our research one step closer to pioneering a breakthrough treatment for Parkinson’s patients.

“All the clinical treatments for people living with Parkinson’s at the moment are based on easing these sometimes-devastating symptoms.

“With this new funding award through the Virtual Biotech Programme, we have the potential to go on to develop a drug treatment which will actively address the root cause of these symptoms to slow, or halt the progression of Parkinson’s for the first time.”

Richard Morphy, drug discovery manager at Parkinson’s UK, said: “This is an exciting new approach that could rescue defective mitochondria inside neurons to prevent dysfunction and degeneration of dopamineproducing brain cells.

“With 148,000 people living with Parkinson’s in the UK, there is a desperate need for new and better treatments for Parkinson’s. We hope the project will identify a superior group of molecules that could one day deliver a life-changing drug for people living with the condition.”

THERAPY

Marching to a new beat Daniel Thomas, joint managing director at Chroma, on how music therapy can help military personnel and their families.

Transitioning from military to civilian life can take its toll not only on ex-military personnel but their families too.

Physical and/or mental trauma can negatively impact relationships between loved ones as those directly affected struggle to come to terms with the aftermath of war.

Veterans’ difficulty transitioning to civilian life can fuel anger and frustration within a household, and leave loved ones feeling increased levels of anxiety and isolation.

PTSD is one of the most common mental health issues which arise after experiencing combat and is a normal reaction to an abnormal situation.

Memories of combat are not stored as normal memories and so need to be processed in a different way.

Physical injuries such as loss of limbs can also affect mental health (especially if this was the reason the soldier was discharged, ending their career unexpectedly). The realisation that physically they no longer look the same and everyday activities may become

a struggle, can be too much to address mentally, leading to depression.

Soldiers’ mental health is finally becoming a focal point and innovative new techniques are emerging to help those injured or traumatised, and their loved ones.

Among them is neurologic music therapy (NMT) – the therapeutic application of music to cognitive, affective, sensory, language and motor dysfunctions.

It is not simply music therapy. It differs based on its use of the neuroscience model in which music is a hard-wired brain language, not just a social-science model for wellbeing. Neuroscience research suggests NMT provides specific individualised, and standardised interventions for those affected by neurologic injury or disease.

As previously mentioned, with PTSD, memories are not stored as normal memories would be. NMT is a proven, effective technique to help soldiers process their experiences in combat. This is due to the fact that talking therapies can feel

distressing and intrusive, but NMT for PTSD can help an individual to self-regulate through difficult emotional states and restore social relationships by fostering feelings of belonging.

In terms of physical injury, NMT, when used alongside other therapies such as physical therapy, enables goals to be achieved sooner, due to patient engagement and the way music interacts with the sensori-motor systems of the body and brain.

Music helps re-frame rehab, to take what may be repetitive & boring and make it interesting, taking the focus off something that may be physically and mentally painful. Neurologic music therapy makes rehab more engaging, personalised and relevant.

Music therapy has been found to support families going through the adoption process, helping strengthen bonds between parent and child, to whom new family members feel more like strangers than future loved ones. Music therapy has also been found to help improve family relationships – reducing feelings of anxiety and aggression. This type of music therapy, based on the social science model of wellbeing, may not be as effective for ex-military personnel. But based on this framework of therapy, Neurologic music therapy can effectively help build bonds once again between ex-servicemen and women and their families.

Improving the mental health of a soldier transitioning to civilian life will enhance their home life and family bonds. Learning how to process experiences of combat will enable veterans to better cope with the emotions that come with such memories and in turn, enable them to feel a greater sense of belonging in civilian life and be more open to rebuilding relationships with loved ones.

For the families of ex-military personnel, their loved one having the access to NMT to help alleviate their mental stress as a result of combat, will undoubtedly help them feel a greater sense of comfort and happiness at home.

Relationships between family members can begin to be repaired enhancing a feeling of belonging once again, not only within the household but within civilian life too. www.wearechroma.com

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RESEARCH

Behind the cloak of competence Almost 100 brain injury case managers took part in a recent study investigating the influence of the Mental Capacity Act on their work with brain injury clients. Here Sophie Moore reports on the results.

Acquired brain injury (ABI) is one of the leading causes of disability within the UK and can have a significant impact on the daily lives of survivors and their families (Khan et al., 2003). Difficulties include physical, emotional, cognitive and behavioural changes, and with many experiencing little or no physical impairment, ABI is often referred to as a “silent epidemic”.

Case management is dedicated to supporting and coordinating the rehabilitation and care of

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individuals with complex needs including ABI. Brain injury case managers (BICMs) offer support to survivors with mental capacity issues and problems with informed decision-making.

The cognitive impact of ABI, namely executive dysfunction, can impact many skills such as planning, inhibition and controlling emotions; all of which can hinder the ability to make informed decisions.

Executive dysfunction is also linked with

increased risky behaviour; substance and alcohol misuse, criminal involvement and suicidality, which raises further concerns around capacity.

The Mental Capacity Act (MCA) is a legal framework designed to guide the assessment of an individual’s capacity to make decisions.

The House of Lords Select Committee (HoLSC, 2014) highlighted that the MCA does not meet the needs of those with specific conditions, including ABI. The current study explored BICM’s views and experiences of working with brain-injured clients with capacity issues. A total of 93 BICMs took part in a survey, with 12 taking part in further interviews.

All respondents had experience of working with ABI and capacity issues. A total of 62 per cent reported having clients make repeated unwise decisions but be deemed to have capacity, and 92 per cent reported disagreements with

RESEARCH

other professionals regarding the outcome of capacity assessments.

Disagreements with other professionals were mirrored in the interviews, with one participant stating they “happen on a day-to-day basis”.

Five main causes of disagreements were reported; a lack of brain injury knowledge by other professionals, a lack of collaboration with individuals who know the client well, the framing of the questions, professionals having their own agenda, and the “cloak of competence” that can mask difficulties that manifest outside of the assessment environment; while clients often appeared to have capacity within an interview context, many were unable to adapt their behaviour accordingly in real-life situation due to executive dysfunction.

Three other main themes were identified; implementation of the MCA and capacity assessments, ABI as a hidden disability, and the vulnerability of ABI survivors.

Participants reported risky situations their clients had found themselves in despite being

assumed to have capacity because their cognitive impairments had been disregarded.

One of the principles of the MCA is not to assume a lack of capacity due to unwise decision-making.

Concerns were raised around the Act’s description, or lack of “unwise decisionmaking”, with 92 per cent of survey responses reporting the Act to be unclear. Changes within the guidance for the MCA, with a focus on description and clarity, should be considered to make it more applicable to brain injury.

The research also recommended the importance of health and social care professionals having an in-depth knowledge of the invisible consequences of ABI before commencing capacity assessments; a recommendation supported by the updated guidelines for the MCA (NICE, 2018).

Where possible, assessments should not be conducted in isolation, but rather take place in collaboration with others who know the client well, and should involve real-world observations of functioning.

This study was supported by the British Association of Brain Injury and Complex Case Management (BABICM), which is made up of registered professionals with a health and social care background from a range of professions, including occupational therapy, nursing, and social work.

Sophie Moore, is a researcher at the University of Plymouth.

References Khan, F. Baguley, I.J. and Cameron, D. (2003), Rehabilitation after traumatic brain injury. MJA Practice Essentials, 178, 290-295.

House of Lords Select Committee on the Mental Capacity Act 2005. (2014), Mental Capacity Act 2005: post-legislative scrutiny. House of Lords: London, UK. National Institute for Clinical Excellence (NICE). (2018).

Decision-making and mental capacity. NICE guideline [NG108]. Available at: https://www.nice.org.uk/guidance/ng108/chapter/ Recommendations-forresearch# 1-training-and-support-for-practitioners. (Accessed 22 December 2018).

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INSIGHT

unEqual opportunities

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INSIGHT

A third of people with a brain condition face workplace discrimination

People living with a brain injury or neurological condition should have more access to employment than ever before. But experts in the field paint a very different picture; in which individuals are struggling to find employment, withdrawing from work all together and experiencing discrimination. Sarah Sinclair reports.

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In July 2019, the Neurological Alliance published the most comprehensive survey undertaken of people living with neurological conditions. It found that one in three respondents have been discriminated against as a result of their condition, and almost a third (29 per cent) have had their contract of employment terminated.

The report came a week after the Scottish National Party MP, Martyn Day, called on the UK government to address the employability gap between those living with an acquired brain injury (ABI) and the rest of the population in parliament.

In Scotland - where it is estimated that ABI is the most significant cause of disablement for people of working age - only around 40 per cent of working-age disabled adults are in employment, compared with more than 80 per cent of those without a disability.

Since the introduction of the Equality Act 2010, those who are disabled should have more access to paid work than ever, yet the disability employment gap remains high and disabled people continue to be paid less on average than the general population, says the Neurological Alliance report. Employment discrimination appears to be rife, despite the legislation.

“People with a brain injury experience discrimination in all areas of their lives and work, sadly, is one of them,” says occupational psychologist Suzanne Guest, who has helped hundreds of people with neurological conditions back into employment, through her support service, Work in Mind.

The group helps individuals who have suffered a brain injury to find meaningful employment, either with their previous employer, or through supporting them to find new work or undertake volunteering.

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The recent findings come as no surprise to Suzanne. She has worked with clients who have been dismissed on competency grounds, as well as those who have felt forced to resign themselves because the workplace hasn't been tolerable for them.

One of the key provisions of the Equality Act is that employers are legally obliged to make ‘reasonable adjustments’ for employees.

However, in Suzanne’s experience, some employers have been reluctant out of concern that it would be discriminating against other members of staff.

“If it's things like getting a desk or a special chair, they're happy for that, but something like restructuring someone's breaks, or giving them a bit of feedback, that doesn't seem to be as well-received,” she says.

Often, individuals don’t want to put themselves through the turmoil of an employment tribunal, which would be required to establish whether those adjustments had been put in place and the employer was breaching the Act. Also, until recently, many couldn’t afford it, with fees of up to £1,200 for such cases, which were ruled unlawful in 2017.

What really saddens Suzanne though, is that many of her clients have felt discriminated against before they’ve even made it into the workplace.

“A lot of my clients will volunteer before they go back to work, and I've seen more discrimination

in the voluntary sector,” she says.

One of Suzanne’s clients was stopped from volunteering because of his epilepsy. Another, whose employer was initially supportive after his accident, returned to work on a voluntary basis but was dismissed within a month because he was struggling to relearn his job.

“These are people who either wanted to have some meaningful occupation of their time or to build themselves back up to getting into paid work,” she says.

“Those bars are hitting them before they've even got to the workplace, because the charities aren't being supportive either.”

Suzanne would like to see work taken more seriously as an important element of rehabilitation.

“It would be good to see work classed as part of the neuro-rehab package. I see work as being the last step to gaining independence. Often the NHS does a great job of saving your life - and of course it has to prioritise daily living skills - but work doesn't tend to be covered in statutory services.”

This is something David Martin, chief executive of multiple sclerosis charity the MS Trust, would agree with. The trust has found that many people diagnosed with the condition are advised by health workers to give up work much earlier than they would like, or need to.

“We've heard time and time again that when

I've seen more discrimination in the voluntary sector... Those bars are hitting them before they've even got to the workplace

INSIGHT

people are diagnosed they're encouraged by health professionals to give up or reign back on work,” David says.

Figures show that only 36 per cent of individuals with MS are in full-time employment, compared to the national average of 75 per cent.

“Some of that might be down to the discrimination mentioned in the Neurological Alliance report, but I think some of it is down to the attitude of the health services as well,” he says.

“I've got anecdotal evidence that there are people in the [NHS] who have encouraged people with MS to stop working, or cut down.

That can sometimes be good advice but certainly, in our experience, there are many people with MS who are actually stopping or cutting back on work much earlier than they need to.

“For some people, the condition might impact

them so significantly and severely that they are simply not able to work and, yes, you do need to preserve your energy, but it's that health and wellbeing aspect. Your brain activation is going to be better if you're doing some sort of work, if you're able to.”

It’s not only the individuals themselves who are losing out, David says: “From an employers’ point of view there's a lot of wasted resources. A lot of people with skills, energy and passion are not getting the fulfilment of work and they're not giving something back to society.”

As well as providing information online, the MS Trust facilitates a Facebook group of 10,000 people living with MS, where they can exchange advice and support for each other about working life with the condition.

“What we're trying to do is provide information so that in an ideal world, if people are able to continue working, then they can do. There has got to be a choice for the individual from a

health and wellbeing point of view.”

But David believes much more needs to be done in educating employers, and other colleagues in the workplace, about MS and neurological conditions.

“About a third of people being discriminated against and forced out of work because of their condition is truly shocking and shows how much ignorance there is in the workplace at the moment,” he says.

On a charity bike ride last year, David met a company chief executive who had hidden his MS diagnosis for 30 years for fear of being discriminated against.

He adds: “It's about educating employers and colleagues at work so they understand what MS is and what reasonable adjustments they might be able to make to improve things for the organisation and the individual.”

For brain injury survivors, however, returning to work can be immensely challenging, and it

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often requires a commitment from both the individual and the employer.

Remploy, the UK-based disability recruitment specialist, provides employment and skills support for disabled people and those with health conditions. It also helps employers to become more “disability confident”.

Vocational rehabilitation consultant at Remploy, Sarah Pearson, sets out guidelines for returning to work with a brain injury.

“There are benefits for the patient, the workplace, and society to finding factors that facilitate a successful return to work,” she says.

“The vocational rehabilitation process is a balancing act in individualised planning and support, as a partnership with the employer, needs to be developed, motivation needs to be generated and awareness built of abilities that facilitate return to work.

“With improved rehabilitation and greater awareness of the impact of ABI, it makes good business sense to ensure that the employee has the tools and support to be able to return to work successfully.”

Michelle Munt resigned from her job “out of guilt” after suffering a diffuse axonal brain injury in a freak traffic accident in 2014. “I was working for a small employer and they didn’t necessarily do anything wrong, but it was the guilt that I was carrying around, that the company would financially struggle without being able to fill my role properly, which made me resign,” she says.

“I don’t think my situation is unique. There's probably a large number who will end up giving up careers because they just don't know what else to do.”

A previous career in recruitment led Michelle to set up Jumbled Brain, a coaching service which helps brain injury survivors back into the workplace. It informs them about what reasonable adjustments they can ask for and assists with CV writing and interview preparation.

Applying for a job is a stressful situation for anyone, but particularly so for someone with a brain injury, she says: “You have the worry of having the employment gap in the first place, and then there’s what you actually put on your CV, which can be an issue for anybody, but particularly if your memory or concentration is not as good as it was.”

Michelle finds that the fear and guilt brain

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It was the guilt I was carrying around that the company would struggle financially

injury survivors may be dealing with also leaves them at a disadvantage in job interviews.

“In my own experience, we can be selfperpetuating,” she says. “Instead of putting our best foot forward as you are supposed to do in interviews, we make it harder for ourselves.”

While there are always times when it is appropriate to disclose information to a prospective employer, such as if reasonable adjustments need to be made, some survivors find themselves oversharing unnecessary information about their condition, which can lead to employers ruling them out.

“The other person may not have noticed anything they feel would be relevant to the role, but out of fear of what's going to happen, they start divulging things that perhaps they don't need to.

“It's a frightening thing for anyone to hear, when you're talking about an impairment, so employers tend to err on the side of caution.”

And yet, it doesn’t take a lot to accommodate someone with a brain injury, just a bit of care and creativity, according to Suzanne Guest.

“Sometimes good brain injury management is just good management, as it involves giving clear instructions,” she explains. “Systems that can be put in place can be simple and low tech, such as checklists and notice boards. These can be helpful for everyone. Other strategies, such as minimising distractions and letting people know that you check emails at certain times of day, are often recommended by business coaches as ways of being more productive.”

She adds: “It really doesn’t have to be expensive to include someone, and often people with brain injury can make really good employees.”

The key is to be able to look past the challenges, and focus on an individuals’ strengths, believes Michelle.

“Most of us struggle with brain fog or forgetfulness and therefore we worry about it a lot, but none of these are things that stop anybody going for the job that they want.

“We focus so much on our limitations - or what we perceive to be our limitations - we actually stop ourselves from going forward for something. Just because you forget a word from time to time, doesn't mean you're not the right person for the job.”

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LEGAL

Trouble abroad – when severe injury turns holidays to hell Quad bikes and water slides are among the biggest dangers to clients of Cheryl Palmer-Hughes; as an English solicitor representing people seriously injured abroad. Here the she tells NR Times about the challenges of working in the aftermath of holidays that turn to hell, in her role at Irwin Mitchell.

NRT: What does your job involve?

What does a typical day look like?

CP: Our team deals exclusively with claims on behalf of people who are injured somewhere other than in their home country.

We predominantly represent English people who are injured on holiday or working abroad, but sometimes we represent claimants from other countries injured here in England and Wales. We deal with cross-border litigation, where we often have to consider whether a different country’s laws might apply or govern the claim. Sometimes there’s a choice as to where you bring the claim, and there are often arguments about which law will determine how much compensation a claimant can expect to receive.

We represent people who have suffered serious injuries – predominantly brain, spinal cord and multiple orthopaedic injuries. We also represent the families of people who have been fatally injured abroad. We have clients who have been injured in road traffic accidents, whilst working abroad, whilst out and about in public areas on holiday, on cruise ships or in plane crashes. We also often represent people who are injured in hotels.

For example, I currently represent a lady who was on a package holiday and suffered a severe brain injury when she tripped and fell down a 10-foot drop onto concrete while she was on the way back to her hotel room one evening.

What’s interesting in our team is that you might have a client who is injured in a particular way, for example, in a car accident.

Though you may have dealt with those factual circumstances before, if the new case you are looking at involves an incident in a different country, you effectively have to start from scratch in terms of establishing where you can bring the claim, which country’s law will apply etc. Different countries have different rules about time limits, about how you evidence a claim and ways of calculating

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We are increasingly being approached by clients who have been injured in quad biking accidents

the compensation. There are special rules about time limits in some countries. These can depend on whether you are pursuing a claim against a state-run entity or a private company or individual.

When we first get instructions we have to think very carefully about where we might bring the claim (ie in which country), and on what basis. Sometimes it is clear cut and there is only one way forward, but often there are different options and we have to consider which is the most beneficial to our client.

We have a network of lawyers across the world who help us with those specific points of foreign law and then we compare all of the options enabling us to advise our client as to which strategy might be the best way forward.

Which countries have you pursued claims in, and which have been the most challenging?

We represent a lot of people who have been injured in Europe, including in France, Spain, Germany, Gibraltar, Greece, Italy, Poland and the Czech Republic.

We also have claims arising out of accidents elsewhere such as Canada and in the US. It can be particularly challenging to bring claims in some countries such as India, Turkey and Thailand, where standards are often very low, which makes it difficult to show that there was a breach of those standards – and even if we can overcome that hurdle, compensation awards can also be very low. We draw on our experience of other claims, and on our network of foreign lawyers, to enable us to assess each potential new claim on a case by case basis.

What are some of the challenges you face in your job generally?

One of the biggest issues we have is making sure there is a viable defendant. Ideally, the defendant should be insured because most individuals won’t have enough capital to satisfy any judgement we get for a person who is very badly injured, and it is not always clear whether a company would have sufficient assets to satisfy a judgment either.

LEGAL

In addition, even if there is an insurance policy, there are often caps on how much a person can claim against that insurance company and so we need to ascertain whether any such caps apply and, if so, what they are.

Have you seen any trends in injuries abroad in recent years?

Over the past couple of years, we have noticed that we are increasingly being approached by clients who have been injured in quad biking accidents. More recently, we’ve also seen more and more back injuries from incidents on water slides. With quad bikes it tends to be the passenger who is more badly injured, with the driver able to hold onto the handle bars, whereas the passengers get thrown off. One of my clients was thrown over the handlebars, and another off what can only be described as a cliff edge.

It seems to me that a lot of people would normally think very carefully before taking a new type of vehicle straight out on the road without having had any training or instruction when they are at home. When people go on holiday it is understandable that they are a bit more relaxed and want to enjoy their time more and experience something new. It is important that there are procedures in place to protect holidaymakers in these circumstances. I am of the strong view that quad bike hire companies should be obliged to give more in-depth training to holidaymakers before they are allowed to leave with a quad bike. From what I hear from my clients, they are often not given any sort of instruction at all.

What advice would you give to someone who has suffered an injury abroad?

Get advice as soon as you can. A lot of people have to deal with getting their loved ones home and getting medical treatment so it’s not always the first thing they think about, but it if they can seek that advice as early as possible, we can start collecting evidence at an early stage and we can try and help out practically too – be that by dealing with insurers, or arranging for one of our client

Cheryl Palmer-Hughes liaison managers to go and visit the claimant and his or her family to offer assistance with accessing medical treatment or benefits.

Aside from that, I would be sure to have decent travel insurance, that’s absolutely key.

You increasingly see people crowdfunding to get their loved ones home because they don’t have travel insurance to cover those costs. That must be incredibly stressful for all involved. People often think that their

E111 [European health insurance] card will just cover everything, which is not always the case and obviously that will change in the future. Generally speaking you just can’t go wrong with having a decent travel insurance policy.

Cheryl Palmer-Hughes is a senior associate solicitor at Irwin Mitchell. www.irwinmitchell.com @IMTravelLawyer

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INTERVIEW

Failed and forgotten in a US care home One of America’s leading thinkers – and doers – in the field of disorders of consciousness, sees major flaws in the way such patients are being managed. In a system marred by premature deaths and unfulfilled recovery potential, however, the tide could finally be turning, Dr John Whyte tells Andrew Mernin.

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INTERVIEW

Hopelessness can’t be predicted within the first three days a brain injury, says Dr John Whyte. Yet, as he has learned in decades of working with disorders of consciousness (DOC), many doctors assume otherwise...

Faced with an unconscious head trauma survivor and their devastated loved ones, all too often decisions are taken to unplug the machine; halting potential recovery journeys before they’ve begun.

“Research has shown that a large proportion of the deaths after a severe brain injury are within the first 72 hours of the injury,” says Whyte.

“The family and caregivers make the conscious decision to withdraw care and let the person die, presumably based on the shared perception of the acute care doctor that the situation is hopeless. The problem is, we have good data which shows that patients who look hopeless in the first three days can go on to be independent.”

Whyte is founding director of the Moss Rehabilitation Research Institute in Philadelphia and the soon-to-be recipient of the Gold Key Lifetime Achievement Award from the American Congress of Rehabilitation Medicine.

He has been working with, and extensively researching, DOC for over 35 years, and has seen much progress around diagnosis and treatment in that time.

But looking at America’s general approach to DOC patients today, he sees a hugely concerning picture. The US is, of course, affected by the big DOC challenges faced universally – such as misdiagnosis which, according to a systematic review published in the British Medical Journal in 2016 (Kondziella et al), could occur in as many as four in 10 vegetative state cases. Pessimism and a sense of treatment futility in acute care that sees lives ended arguably prematurely is also a global issue.

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We have good data that shows people who look hopeless in the first three days can go on to be independent

A major concern specific to his native US, however, is the care pathway currently taken by most DOC patients.

Health policy, funding changes and a general lack of research have conspired to create a system which Whyte believes is failing DOC patients who may have a genuine shot at recovery.

It’s a system in which the majority of DOC patients are discharged from acute hospitals to non-specialised nursing homes within weeks of their injury. This, says Whyte, is denying thousands of people with the potential to regain lost functions and independence, access to the intensive rehab they need.

“A nursing home in the US is not just a place that isn't providing intensive rehabilitation, it's a place that isn’t providing intensive medical management either. You don't have to have a physician rounding on patients every day or specialty consultations. You can transfer a patient who gets sick to an acute care hospital when that happens, so you don't have to have backup in your institutions. It’s not a place where you should send a medically-fragile, complicated patient who needs intensive medical oversight.”

Today’s situation has been decades in the making.

When Whyte’s career began in 1984, care was built around a fee-for-service health insurance system. This meant providers charged daily for the services they delivered.

“A number of for-profit healthcare companies I believe saw DOC patients as good business.

They were impaired for a long period of time, and some of them indefinitely. You could continue to dream up treatment goals and give them physical therapy day after day and charge for it.

“I saw patients who were recently injured and progressing quite nicely, and those who had been injured years ago, and weren’t changing at all. Clinicians were writing active treatment goals for all of them as though they were all the same – and the insurance companies were getting billed as though they were the same too.

“At some point, the payers said ‘we're paying a lot of money and it’s not really clear that this is cost effective’. At that time there wasn’t data to say what we were doing was or wasn’t cost

INTERVIEW

effective. They basically decided that it wasn’t cost effective to pay for this for anyone.”

And so began what Whyte calls an “historical pendulum swing” towards the current situation.

By the end of the 1980s, healthcare was increasingly being charged for in more capitated ways. In acute care, a set total amount, rather than daily fees, might have been billed for looking after a heart attack patient, for example. This intensified the pressure to deal with patients as efficiently as possible and to justify the cost of treatments and therapies.

“In this transition, payers came to the conclusion that paying for rehabilitation for unconscious or minimally conscious patients was not cost effective.”

Misconceptions about DOC-related rehabilitation also contributed to its demise.

Whyte says: “The payers also incorporated the logic that rehabilitation as an active service requires that patients consciously participate in it. Patients learn how to walk, operate a wheelchair and use a memory notebook to keep track of their appointments et cetera – this is the familiar model of rehabilitation, which assumes that the patient needs to be an active participant in the process. But that's one model and that's assuming that if they can't be an active participant, then the whole process is worthless, which we are increasingly having data to say that's not the case.”

Many healthcare payers insist on only funding admission to acute inpatient rehabilitation programmes if the patient is at least minimally conscious and undergoing identifiable functional improvement. As Whyte notes, this is particularly challenging since a number of studies show that misdiagnosis of a patient’s level of consciousness is “very frequent in the hands of non-specialists”.

A paper produced by Whyte and Risa NakaseRichardson in 2013 analysed existing research findings on outcomes, comorbidities and care needs relating to DOC. It found evidence in several articles of a high burden of medical comorbidity and high rates of rehospitalisation in DOC cases. It also found that the rate of these complications can be reduced with active medical management and, possibly, brain injury expertise; both

Dr John Whyte

of which are lacking in most nursing home environments.

Perhaps the headline finding was that: “Collectively these studies suggest that a large proportion of patients with DOC who are admitted to inpatient rehabilitation regain consciousness and even orientation; and that their further recovery can go on for more than two years and that structured programmes

that care for patients with the worst prognosis may result in surprisingly positive outcomes.”

Not all DOC patients are moved into nursing homes in the US, and Whyte is among the relatively small band of experts working with DOC clients in specialist rehab facilities. This work has enabled some useful research.

“In one of our own studies, we asked ‘what's the trajectory to becoming more medically

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stable and is it closely related to how long ago the patient was injured, or how long ago they arrived at the rehab hospital?’ The answer is that there is no relationship with how long ago the person was injured and a strong link to how long ago they got to a rehab hospital.

“This gives us some evidence that it's not just if you wait, they'll get better, but if you know what you're doing, identify the problems, treat them and manage them, then they get better.

But none of this is going to happen in a nursing home.”

Part of the reason that health insurance companies are so pessimistic about DOC patients, says Whyte, is not just that they think they're wasting money, but that they're wasting it on people who can't get better, no matter how much money is spent on them.

“But this is simply not true in a lot of cases.

We've shown that even when you admit a patient to acute rehab in an unconscious state, they are likely to regain consciousness while they're in rehab. Some of them are likely to even resolve their confusion and start becoming much more actively engaged while they're in rehab.

“By five years, of the patients who were admitted to rehab while unconscious, about 20 per cent are living independently or rated as employable. So it's a minority but not a trivial minority. And a lot of the other patients are getting better in terms of daily living and mobility, though they're not to the point where they could be independent or employed.”

The odds of recovery for DOC patients taken on the well-worn path from hospital to nursing home may be much slimmer than those who receive intensive rehab.

In fact, such statistics are not known, partly because the current situation has thwarted research, as Whyte explains.

“That patients with DOC have been substantially triaged to nursing homes has had the unintended consequence of making it next to impossible to do research because most nursing homes in the US have no research infrastructure. It's also the case that most nursing homes aren't specialised for patients with DOC. They can't afford to be because they're expensive patients to take care of, so no home has a whole bunch of them [together].

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One of the points in the new guidelines is that prognosis can't be accurately predicted early, and therefore, big decisions should not be based on the notion that it can.

This means if I wanted to do research in nursing homes, I'd need almost as many nursing homes as I had patients in my study, because there's going to be one patient in this nursing home and two patients in that one. It’s essentially infeasible to learn about disorders of consciousness from patients who are in nursing homes.”

An ideal solution to America’s DOC challenge would be a randomised controlled trial in which intensive rehab and nursing home approaches

are compared, to prove to payers which is best.

“The payers would like to see a trial in which you take a whole bunch of patients with recent serious brain injuries and send half to an intensive rehab programme, and the other half to nursing homes like we're doing in the US now. You could then measure both the cost and the long-term outcome of those two systems.

“Everyone agrees that that would be the most rigorous way of answering this question, but pretty much everyone also agrees that it is never going to happen. For insurers to ask for that is sometimes a disingenuous request as they know it’s never going to happen and therefore they will never change their policy.”

Logistical problems and the sheer cost of such a study make it unlikely and focus has instead been on “triangulation from other sources of evidence”.

This has culminated in the issuing of an evidence-based clinical guideline last year.

“We pulled a vast amount of literature together on diagnosing disorders of consciousness, predicting prognosis in disorders of consciousness, and treatment of patients with disorders of consciousness. For the first time, there was sufficient data to make strong statements about many important things that have policy implications.”

Whyte was involved as an author, while it was jointly produced by the American Academy of Neurology, the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living, and Rehabilitation Research’s (NIDILRR’s) Traumatic Brain Injury Model System.

It concluded that the combined weight of research mandates changes in clinical care and healthcare policy for the DOC patient population. Among other things, the guideline supports access to specialised multidisciplinary rehabilitation for patients with DOC and notes that the pessimism that drives early withdrawal of care is not warranted by the longitudinal data.

“One of the points in the new guideline is that prognosis can't be accurately predicted early, and therefore, big decisions should not be based on the notion that it can. Another is that there is sufficient evidence now that these patients can benefit from, and need, high

INTERVIEW

intensity complex rehabilitation services. This review itself didn't find randomised controlled trials of the kind that we would ideally want, but essentially,used the same logical argument, that we have a high burden of complex disease and a high potential to get better. We know that in other situations which are complex and need intensity, it helps to concentrate people in a facility where expertise can be developed, and so on. So putting all the evidence together, these highly respected and influential bodies basically said that these people are candidates for intensive rehabilitation and should have access to it.”

The guideline also supports the use of Amantadine, a medication commonly associated with Parkinson’s treatment, in traumatic DOC. The latter recommendation is a direct result of a study Whyte was involved in.

“We published the first randomised control trial that actually showed that a drug made a difference in the rate of recovery. Before that, everybody was giving drugs off label and crossing their fingers, but nobody had good data.

“I hate to even say it out loud, but it took us 14 years to publish the trial because we had to build the research network and get funding to do the trial. Then it took us six years to enrol 184 patients, so that was tremendously inefficient, because we were cobbling together small programmes that only exist rarely. If policy change happened so that large rehab institutions were treating these patients routinely, the pace of research would dramatically accelerate.”

The Amantadine findings have been adopted into practice with “almost every patient with a traumatic disorder of consciousness being given the drug soon after injury”. Other parts of the guideline which require more significant behavioural changes have not yet been heeded, however.

“Published evidence doesn't instantly lead to healthcare behavioural change. It takes active work to get people to change their practices and there's an overarching issue of how do we get translation to happen at a faster rate.

“But there are additional obstacles here in the US. We are terribly concerned about the overall cost of healthcare period. Anything

that involves spending more rather than less is going to be met with initial resistance. It would be great if we had really good data on cost effectiveness. If we had evidence that spending money now will save money in the long run, that would facilitate the political policy conversation.”

Whyte believes access to intense rehabilitation would indeed save in the long run, especially in reducing acute care hospital visits.

“Some patients could be going home instead of being cared for in institutions so that would save money. Also, you have patients bouncing back and forth between nursing homes and acute care hospitals for years, getting acute things treated that don't ultimately move them ahead in any way.”

But in the US, the economic argument is clouded since “the pot of money that pays to take care of you long term is not the same pot of money that pays for your health insurance in the short term”.

Whyte says: “Many people are getting their health insurance from a private company – an employer-based company. Once a year, they can move to a different insurance plan but if they lose their job, which they will when they have a disorder of consciousness, eventually they will move off any of those private plans onto a government one. So the bottom line is that the company paying for their early healthcare won't be paying for their long-term costs. Why would the insurer care about the two, three or five-year cost of recovery?”

There are also institutional barriers to improving DOC care in the US in line with the recent guideline, he believes.

For example: “If I'm working in an intensive care unit, we are being paid a capitated rate for every patient with severe brain injury, and therefore we need to discharge that patient as quickly and efficiently as we can. There are a million nursing homes that I can choose to discharge that patient to, but there might only be one or two rehab facilities. They may or may not have a bed the day that I'm ready to discharge the patient, while my hospital administrator is breathing down my neck to get this patient out of here. So there are implications for rehab capacity.”

Also, the majority of rehab facilities with brain

injury programmes are not currently set up to accept DOC patients.

“They don't have expertise in that very challenging population. If and when the policy changes, there will need to be a big gearing up to enhance the skills of rehab providers to care for this patient population, because most don't know how.

“So it's a very complicated problem that will require changes in payment, institutional capacity and provider confidence. But at least now, for the first time, somebody other than providers who are totally invested in this patient population are saying the data justifies [change].”

Despite the considerable challenge ahead in opening up access to intensive rehab for people with DOC, Whyte is upbeat about the outlook for DOC patients generally.

“I've seen tremendous progress in my lifetime, so that gives me optimism that there will still be more. When I started, there was no relevant data about any of this. Nobody knew how much patients recovered, nobody could list their medical needs, nobody could tell you what their long-term prognosis was and nobody could list a treatment that had evidence that it would work. All of that is different now; it's not perfect, but we have meaningful answers to all of those questions.

“There's a lot of research going on around improving the detection of consciousness, because we know that we miss people who are conscious that we think are unconscious.

There's been a lot of work on both behavioural rating scales but more recently work using functional MRI, or EEG-based techniques to actually show that patients who have no behaviour at all that looks conscious, can sometimes be found to have thinking that is.

“That’s an intriguing finding that we don't know what to do with yet. What are you going to do with those patients? What's the rehabilitation strategy when the person has no movement that can connect to communication devices or anything like that? We're a long way from being able to communicate with brainwaves.”

ONLINE: See nrtimes.co.uk to find out about Dr John Whyte’s mission to revolutionise how rehabilitation treatments are defined.

NRTIMES 47

CHILDREN OF THE REVOLUTION sponsored feature

Children of the Revolution The innovators helping children with complex disabilities to have a happy, empowering and inclusive childhood.

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CHILDREN OF THE REVOLUTION sponsored feature

Harnessing the power of preparation Trying a new powerchair can be a daunting and dangerous experience for children – but help is at hand from Tiki the Elephant and the innovative creators of i-Drive, as NR Times reports.

For a child with motor disabilities, taking control of their first or latest powerchair can be a major milestone in their young life. It’s a challenging process and, often, a fearful one too – for parents as well as the child.

Various healthcare professionals, and technology provider representatives, may be involved in preparing the chair and its control system.

The child then has a limited time to try it out before they and their family make decisions which can have a huge bearing on their future quality of life and independence.

There is also the immediate risk of colliding with walls or furniture as they first take control.

The i-Drive Assessment Kit provides an alternative. It enables therapists to assess children multiple times in their existing seating system without the need for a powerchair.

The i-Drive takes away the risk of the child losing control of the powerchair and physically hurting themselves the first time they try it.

It also eradicates the risk of an unsuitable chair or control system being selected due to rushed decision-making or lack of assessment time.

It enables a bespoke control system to be developed, tailored to the movements the individual is able to achieve easily.

The i-Drive provides a true assessment of the child’s functional ability – and cognitive and special awareness - as they focus on operating the switches rather than struggling with an unfamiliar seating system.

The system is used in combination with the Loonz

video game, which helps the child to get comfortable with the controls. Controlling Tiki the Elephant over many hazards in his hot air balloon, builds the child’s confidence and helps to fine-tune the controls. As the levels progress, the difficulty increases, helping users to improve their As the levels hazard awareness. Parents progress, who are worried about their the difficulty child operating a heavy increases, powerchair for the first time helping users to also gain peace of mind that improve their the child will be prepared hazard awareness once they take control of their new device.

The i-Drive, in conjunction with the Loonz game, can assess for a range of controls from head arrays, to sip and puff, tray controls and chin controls. While more games are planned, a virtual reality training game is also being introduced.

This puts the user into a real-life environment such as a classroom or living room and trains them to navigate around obstacles using their new powerchair control system.

The i-Drive system is distributed in the UK by BES Healthcare Ltd, which can support professionals and parents via demos, training and assessments from its in-house Assistive Technology Specialists.

Contact info@beshealthcare.net or call 011799 666 761 for more information.

NRTIMES 49

CHILDREN OF THE REVOLUTION sponsored feature

The next gen-air-ation of sensory spaces PODS are pop-up, themed sensory spaces for children.

Although designed for any child to enjoy, they are ideally suited to helping children with sensory needs, physical disabilities and learning difficulties…

Remote controlled internal sensory lighting helps to generate a “360-degree immersive environment”; a catalyst for imaginative play, learning, relaxation and sensory stimulation.

Each PODS product can be inflated and deflated within 40 seconds, is lightweight and comes with a storage backpack, enabling it to be taken anywhere.

It is therefore the perfect travel companion for on-theroad carers for domiciliary care – but PODS are also used around the world in specialist schools, hospitals, creches, respite centres and hotels, as well as in the home.

Designed in Britain, they come with a range of interchangeable themes. One minute, children in your care could be on a sub-aqua quest and the next, embarking on a galactic space adventure or having tea in a magical princess’ palace.

Each removable theme has a corresponding audiobook and ebook about the adventures of Professor PODS and his sidekick. The complementary sound effects aid the experience and complete the exciting scene set by PODS. These removable graphics can be wiped clean to maintain cleanliness and product aesthetics.

Its creator PODS Products describes PODS as: “Safe spaces where children can go to unwind, calm their mind and generally relax, especially in times of a meltdown.

With in-built colour changing sensory lighting, PODS users are able to follow the changes of light through the vivid illustrations and artistic concept within the space.

“Light tracking is key in the sensory development of

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early years children and those affected with autism across the spectrum.

"For education, PODS is an imaginative place where vocabulary can be exercised through role-play. Through creative state of play and exploration, other key life skills can be practiced PODS offer such as negotiation and an exciting leadership. alternative to "Use of PODS can prolong digital devices children’s concentration and a safe periods and also has and relaxing many therapeutic surrounding... applications, simply as an engaging experience or to complement a child’s favourite toy, creating a unique and personal environment with cognitive benefits.”

PODS are also reportedly great spaces in which to do homework and as a calming reading environment.

Founder and head designer of PODS, Alex Ford, says: “PODS offer an exciting alternative to digital devices and a safe and relaxing surrounding that can increase periods of play and learning for children.”

Ford is an innovator of inflatable spaces who also has experience of working with autistic children. He recognised the versatility of inflatable technology and created an innovation that could provide a creative learning and relaxation environment for

CHILDREN OF THE REVOLUTION

all children to enjoy. He says: “Many parents tell us that they too would like one for themselves. PODS is an experiential product that will keep children safe and calm for hours, leaving parents time for themselves whilst their little adventurers relax in the visual surroundings.” www.podsplay.com

NR Times has teamed up with PODS and has one of these amazing, pop-up safe spaces to give away. Could your child, company, centre or charity benefit from PODS? Simply sign up for our free weekly e-bulletin via our website, www.nrtimes.co.uk, before 30 November to enter the draw.

NRTIMES 51

CHILDREN OF THE REVOLUTION CHILDREN OF THE REVOLUTION

Covering neuro-rehab from every angle

NR Times aims to inform and in spire profess ionals from all d isciplines involved in the care of people with brain and s pinal in juries and conditions .

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

To re q u est a me dia p a ck a nd to f ind o u t mo re a bo u t be co mi n g p a r t of N R Ti mes e m a i l g a r y @ a s pectp ublish ing .co.uk. w w w. n r t i mes .co.uk @ed i to r N RTimes 52

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CHILDREN OF THE REVOLUTION sponsored feature

A bundle of fun for all the family A unique product is giving children and young people with disabilities the freedom to go out and enjoy life, whatever the weather.

When Emily Goodall set up BundleBean in 2011, she wanted to design a new, high-functioning nursery product that would make life easier for mums.

In the process, however, she stumbled on an entirely unexpected market.

Emily noticed a demand from parents of children living with disabilities. There was a clear need for a universal, affordable wheelchair cover which would give young people the freedom to get out and about in the unpredictable British weather. The BundleBean wheelchair range has since become one of its most successful, vastly improving the lives of users.

“It really makes a difference,” says Emily. “You can go out for a walk on a rainy day as a family and know that your little one is warm and dry. It also helps you to go on holiday because it’s so easy to carry.”

The range now has an offering for newborns through to adults. The kids’ fleece-lined wheelchair cosy and lightweight rain cover – which folds down into a handy pocket-sized bag – fit ages three to 11, with additional versions for ages 11 and above. They are all extendable, so can be adjusted as a child gets older.

The covers are universal, fitting all wheelchairs from off-road to manual and electric, and non-restrictive.

They are also designed with bright Velcro fastenings for those with visual impairments. But the biggest selling

point, says Emily, is how easy to use they are. The cover fits over the individual rather than the chair, and can be on in seconds, allowing older children and young adults the freedom of going out on their own.

“We have young adults who use the BundleBean because it helps them to be independent. That is something which we really care about.

“For users who are in high school, to be able to get it on and off on their own on a school outing is really empowering.”

They also serve as a comfort and reassurance for children who may have trouble interacting or feel nervous in a new situation.

“They’ll take it everywhere with them, to any potentially difficult situations, such as on an airplane,” explains Emily. “Having the BundleBean over their knees is very reassuring.”

And of course, they serve the vital function of encouraging children and young people to experience the great outdoors, knowing they will stay cosy and dry come rain or shine.

“Our message is about not hiding away, but being out and about. It’s nice to have something which livens up a rainy day or a dull wheelchair,” adds Emily For more information and products visit: www.bundlebean.com.

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CHILDREN OF THE REVOLUTION sponsored feature

Introducing Mollii the super suit that’s transforming rehabilitation for children When Mollii Suit appeared on Sweden’s Dragons’ Den, all five investors were in...

The deal clincher that day was young Joanna, a little girl with cerebral palsy who provided a powerful example of what the suit can do.

She shook hands with the dragons before and after the product’s mild electro-stimulation had been applied; the remarkable change in her mobility wowed the entrepreneurs into opening their cheque books.

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In the nine years since, Joanna (pictured opposite in 2015) has continued to improve her motor functions immeasurably, and Mollii Suit has spread into rehab pathways across Europe.

“It’s my superhero suit,” said one child of the innovation in a recent qualitative study – and he was referencing much more that its Marvel-esque appearance.

Mollii Suit helps to improve movement and muscle control rapidly in people with spasticity, motor and movement disorders or abnormal muscle tone It is therefore becoming increasingly utilised by people with neurological conditions such as cerebral palsy, stroke, multiple sclerosis and brain and spinal cord injuries.

The suit, available for children age 3+, as well as adults, works by stimulating the antagonist to the spastic muscle with low-level electric current.

It is generally worn three or four times a week, for an hour at a time, often on a hired arrangement to start with and then it can be purchased outright.

Mollii Suit is designed to trigger reciprocal inhibition, the body’s own reflex, to reduce the tension in the spastic muscle and to help voluntary movement. Rather than offering a short-term result which quickly fades, it is designed to take users past certain thresholds – beyond which are permanent improvements in motor function.

“We programme the suit to match each child's needs, focusing on the symptoms, which is why the product is applicable across so many patient groups,” says Richard Welch, director of Remotion, Mollii Suit’s UK distributor.

CHILDREN OF THE REVOLUTION

“We are providing a very gentle level of sensory electrostimulation which helps the body itself to rebalance its muscle tone and its own movements – and to be able to control movement. If you can control your movements, particularly for children, you can repeat them better and so the learning or relearning process improves.

Often parents "This makes therapy much more come to us productive and effective.” after lots of While helping therapists to challenging oversee better outcomes, the experiences product can also be a gamechanger for parents.

“Often parents come to us after lots of challenging experiences.

The alternatives to dealing with muscle tone and movement disorders include medication, which can make children drowsy and have other unpleasant side effects.

Botox/botulinum toxin injections are often used which can be painful but must be repeated every few months when they wear off. And there is surgery usually involving losing some function to gain relief.

"This is something they can feel comfortable in, and use at home."

To access Mollii Suit in the UK visit www.remotion.co.uk or contact Mollii@remotion.co.uk.

Find this article online at nrtimes.co.uk for links to research into Mollii Suit.

"

NRTIMES 55

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CHILDREN OF THE REVOLUTION sponsored feature

The key to a good night's sleep Sleep is hugely important to a child’s wellbeing – but many conditions make it challenging and, in some cases, even dangerous. Enter Kinderkey Healthcare, which is fighting back through pillow power, clever design and years of continual improvement.

Kinderkey Healthcare’s Bearhugzzz bed was initially created to help a young man who had never been able to sleep without a protective helmet. His mother approached the safe sleeping solutions company and – 17 years later – the product is used by children and adults with a wide range of conditions and challenges.

The original brief was to create something strong enough to cope with the man’s vigorous movements associated with his condition. Yet it also had to be soft enough to keep him safe from injury. With the additional challenge of making

the bed portable for regular trips to respite, Kinderkey set about creating something functional but also attractive.

Founder Jill Handley says: “We initially designed a bed comprising of twelve Toblerone-shaped pieces of foam standing on their ends covered in waterproof, antimicrobial fabric which could be unzipped for ease of transport. The mother was delighted and said it changed her and her son’s life. He could sleep safely and in comfort and the mother was also able to have a good night sleep knowing her son was safe.”

Jill quickly realised, in conversations with healthcare professionals, that Bearhugzzz could be a safe sleep solution for children, as well as adults, with many different conditions.

“For example, sensory overload is a common issue for children with autism,” says Jill. “The high walls of the Bearhugzzz help to block out distracting sights and sounds, enabling the child to relax making it easier to fall asleep.”

As the Bearhugzzz design has evolved from the original model, its appeal has broadened.

“One of the first adaptions we made was to make the bed more space economical. Not everyone has a bedroom that will accommodate a large bed. We changed the structure of the walls making them no thicker than 100mm.

“This was a challenge as we needed to keep the integral attributes of the bed. We accomplished this by using steel and foam together creating a strong, robust wall that is soft to touch.”

The bed, which is portable and can easily be taken apart using Velcro and zips, is often used in schools too. It provides an area of quiet and calm, with optional viewing panels made of clear vinyl, ensuring children can be safely looked after by teachers and other professionals.

“Also, biting and chewing can be an issue and so we use anti-chew fabrics in vulnerable parts of the bed when needed. Our latest development with the Bearhugzzz is a height adjustable frame. Ultimately, the safety of the Bearhugzzz bed gives parents and carers peace of mind so that everyone has a good night’s sleep.”

Also in Kinderkey’s range is the Cosysafe Cot, which comes in bespoke sizes, is height adjustable and has four-part profiling and Trendelenburg Tilt. It is available in wood and Perspex and a range of colours. Padding is offered in a wide range of designs. Jill says: “We have just invested in a lovely new children’s pattern which features rows of animals, including elephants, giraffes, zebra, monkeys, in contemporary colours in a pattern which is unique to us.”

All products are supported by expert demonstrators who offer free assessments to ensure the end user benefits from the many available options.

For more information visit https://www. kinderkey.co.uk or get in touch via contact@ kinderkeyinternational.co.uk / 01978 820714.

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N C E 19 2 3

CHILDREN OF THE REVOLUTION sponsored feature

Precision Rehab provides George with the powerchair of his dreams Eight-year-old George Lockley enjoys living life to the full partly thanks to his Piccolino Paravan powerchair from Precision Rehab.

George (who has a twin brother Harry) and a younger sister Abby, was born with Spinal Muscular Atrophy Type 2.

“His condition means his muscles are extremely weak and he will never be able to stand or walk and has therefore been reliant on manual and powered wheelchairs from the age of two” explains his mother Liz. In early 2018, the family decided it was time to replace George’s powerchair as he needed

a model with additional features. They attended several exhibitions to see what was available and George tried a handful of different chairs.

“The Piccolino had been suggested to me by a couple of mothers who also have children with SMA Type 2 and, as soon as we met Matt from Precision Rehab and George saw the Piccolino for himself, he loved it,” says Liz. Shortly after meeting, Matt visited George to conduct a full assessment.

"When Matt visited us with the demo chair, I was really impressed with the way he worked with George.

"He didn’t try and push the chair onto George but let him explore the chair and work out all the features for himself and took the time to answer all George’s questions – of which there were quite a few. Matt was also adamant that the chair should fit George as opposed to George fitting the chair.”

Matt, who runs Precision Rehab with his wife Emma, says: “We tailored George’s Piccolino to meet his exact requirements by mounting the joystick to aid his posture, fitting a different seat belt and custom lower leg length.

"We also fitted additional lateral supports to provide George with increased postural support as he is quite slim for his height and made numerous other modifications."

Thanks to George’s Piccolino being able to adjust to a horizontal position, it practically converts into a changing table which makes it much easier to help George with his toileting when the family are out. George also hates missing out on any lesson time at school and thanks to this feature on the chair, the changing process is much quicker for staff to complete and George is only out of class for a few minutes.

The Lockley family love to enjoy days out and to help make this as easy as possible, Precision Rehab also arranged for a crash tested Paravan automatic vehicle docking system (fitted by an authorised Vehicle adaption specialist) to be installed in their vehicle.

“George’s Piccolino is the best chair he’s ever had. The service from Precision Rehab has been second to none and I would not hesitate in recommending them to any parent looking for a powerchair for their child. The chair has changed our lives as a family as we can now do so much more together and George is happier

and more confident than ever” adds Liz. With seat widths of 270 – 430 mm, a depth of 320 – 385 mm, and back height of 400 – 480 mm combined with side supports, head support and other seat accessories all of which are multi variable and individually adjustable, the Piccolino is a truly versatile powered wheelchair which can meet the needs of young powered wheelchair users.

Precision Rehab is a family business with a team that has over 25 years’ experience in the assessment, sales and servicing of specialist powered wheelchairs.

To discuss the full range of powerchairs available from Precision Rehab or book an assessment please call 01256 300111, email: info@precisionrehab.co.uk or visit www.precisionrehab.co.uk

NRTIMES 59

INSIGHT sponsored feature

The gait way to more independence The London Orthotic Consultancy is helping to bring the most advanced treatment to those with cerebral palsy or other conditions requiring rehabilitation, throughout the UK and beyond

Private clinic the London Orthotic Consultancy (LOC), founded in 2004, provides bespoke orthotic treatments for a wide range of adult and paediatric conditions.

It operates privately across the whole of the UK and abroad and also has a growing number of international clients.

Director Sam Walmsley explains: “We deal with complex physical problems and generally manufacture bespoke orthotics to address them. We have a unique setup for the UK in that we have 2D video vector gait labs and we do all our manufacturing on site.’’

LOC has two clinics with the gait labs, that specifically focus on the Optimal Segmental Kinematic Alignment approach to Rehabilitation (OSKAR) – one at its Kingstonupon-Thames headquarters and another at the University of Salford teaching hospital, a mile from Manchester city centre.

These are in addition to satellite clinics in London’s Harley Street, Bristol, Cambridge and Romford. It operates the OSKAR clinics in partnership with Elaine Owen, a world renowned physiotherapist who was awarded an MBE in 2012 for services to children with disability. She developed OSKAR as an orthotic method for treating children with lower limb neuromuscular conditions such as cerebral palsy and it is a method that has enjoyed considerable success.

“At its heart, it’s really all about trying to prevent some of the very disabling conditions that can happen with a condition like cerebral palsy, for example, and trying to prevent the natural history of the condition taking hold,’’ says Sam. “Normally, somebody with cerebral palsy is going to develop contractures and pectal deformities. Perhaps, at some point, they’re going to walk, but maybe then they’re going to lose that ability later in life as they go through

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adolescence. OSKAR is all about trying to reduce the impact of cerebral palsy as they grow.

“It’s also about trying to reduce the other interventions that are then required, certainly the surgical interventions, but also things like Botox which are very commonly prescribed - it can reduce the incidence of using that as well.’’

The effects of cerebral palsy range in severity, usually in correlation to the degree of injury to the brain. The primary impairments are to muscle tone, motor functions, balance and posture, but the symptoms will vary from one child to another.

LOC worked with Elaine Owen, using the gait lab and developing the clinic and soon began to see improvements in the children they were treating, which led to a roll out of OSKAR across the UK and the opening

of the Salford clinic. Treatment begins with a detailed consultation at LOC, which is structured around the International Classification of Functioning (ICF) guidelines, which look at different areas, such as bone structures, muscles and joints. But LOC then takes that further in a more comprehensive and holistic approach.

“We look at their function, their mental wellbeing, and all of those areas. So it’s not just saying 'I want that joint to have more range of movement'. If you are going to fit them into something and that then compromises their participation in their school activities, then that’s an issue,’’ says Sam. “We look at it in that framework and then we set goals around it. So a parent might say 'my child is not standing yet and I want them to stand and that is my short-term goal and I want my medium-term goal to be that they are taking steps before they start school'. Or, at the moment, they might say that they are using a walking frame, but they want them to be able to start walking using sticks or to be able to walk independently.

“We might say 'great, we feel we can do that' but also we might also say they need some other treatment, for example if their posture is very bad or there’s an issue with the bones

The London Orthotic Consultancy's gait lab in action, helping to diagnose a paediatric client.

INSIGHT

Sam Walmsley, director of London Orthotic Consultancy, works with a young client (top), while a colleague crafts orthotics products on site. in their leg and we will then build some goals around those things as well. There may also be some subjective goals, such as they are not comfortable in their AFOs (Ankle Foot Orthosis) or they are not happy with some other aspect of their provision.’’

LOC then develops a prescription, takes measurements, fits the child with a splint and prescribed footwear. At the next appointment, after about a month, when they come back for a fitting, it then uses the gait lab to ensure that that prescription is optimal.

“Then we send them away for probably between one and two months,’’ he says.

“After that we bring them back to review and measure them with the gait lab to

make sure everything is still optimal against our milestones. We then measure them periodically against the goals we expect, so that everybody can see that the orthotics are delivering on the original goals.’’

Because LOC manufactures its own orthotics, it can promptly address any issues that patients might have.

“We always resolve any problems free of charge,’’ says Sam. “We have a manufacturing setup in-house, so it’s easy for us to make any adjustments or alterations. This might sound like a no-brainer, but often in an NHS department you go to see the orthotist and they will say: I’ve just got to send that away to Leeds or Brighton, so it

may go away for three weeks, then you get an appointment three weeks later. So the fluidity and speed with which we can do problem solving is absolutely fundamental to the success of OSKAR as well. That is a key part in delivering a very good orthotic practice.’’

And are there any plans to extend this successful practice?

“We would like to continue developing the Manchester clinic and use it as a major hub in the UK with satellite clinics running off from that. From there, we would be looking at the next location to build upon in the UK, so that people can access us far more easily.’’ www.londonorthotics.co.uk

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INSIGHT

Winging it in the rehab world For over 20 years the Flying Faculty has been sending experts across the globe on an international mission to improve neurorehabilitation training and delivery. NR Times reports.

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INSIGHT

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INSIGHT

“Trust in God and you will be alright,” read a sign that greeted Professor Barbara Wilson on a recent trip to a Nigerian hospital.

This was an instant reminder to the neuropsychologist of how attitudes towards healthcare are so varied around the world.

She was there to share her experience gained from more than 40 years in the brain injury rehabilitation field. Joining her were fellow eminent professors Wayne Feng and David Good from the US and Caterina Pistarini of Italy.

The trip, last December, was the latest stop of the globe-trotting initiative, the Flying Faculty.

The scheme is run by the World Federation for Neuro-rehabilitation (WFNR) and delivers expert training programmes in neuro-rehab across the world.

Welcoming the global contingent to Nigeria was Dr Mayowa Owolabi, who runs the Blossom Neurorehabilitation Centre in Nigeria and serves as the WFNR’s regional vice-president for sub-Saharan Africa.

Barbara says: “Rehab is very discrepant in different countries. Going there gives others an insight into better ways of doing it.

“In Botswana, for example, many people still believe in witch doctors, and if you get a brain injury, it’s because you’ve upset your ancestors.”

Over three days, Barbara and her colleagues joined neurologists, physiotherapists, clinical psychologists, speech therapists, medical students and other physicians from across Nigeria.

They squeezed into a classroom in University College Hospital at Ibadan University with no air conditioning and only an electric fan to cool them.

In the bathroom there was no running water or sanitary system. The hospital itself was in a poor condition, and overcrowded with patients. But while Nigeria had limited infrastructure, there was no lack of keenness to learn among local healthcare professionals.

“There were so many questions, and such vivid interaction, it was unbelievable,” says Professor Wayne Feng, on Skype from Duke University, North Carolina, where he is chief of the stroke division.

“The infrastructure was very primitive, but the people were well trained with limited resources, and they had enormous enthusiasm.”

The event was aimed at uncovering innovative

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The infrastructure was very primitive but the people were well trained and had enormous enthusiasm

technologies in neuro-rehab, in order to improve the lives of patients in Nigeria. It was also designed to foster better relationships between professionals in the country.

“The Nigerians we met definitely needed some help with the infrastructure, and they needed to be better connected to other initiatives,” he says.

“They want to treat stroke patients, and help them get better, but they need to be a part of the world, to learn what other countries are doing, so that they can adopt and form local policy and procedure.”

This was Wayne’s first trip with the Flying Faculty, and his first visit to Africa. But despite it not getting off to a flying start, after an

encounter with a thief in the airport that was “quite a drama”, this didn’t taint his experience, and he would do it all over again.

“It was an adventure. I could sense some scepticism at first, but the WFNR did a wonderful job, to not only provide support, but to kick off the enthusiasm and give the [Nigerian professionals] hope that they are not doing it alone.

“We helped groups across Africa, and West Africa unite, to realise the power of doing things together.”

The Flying Faculty began in 1996 as a small team of medics visiting Bosnia. Over the last 20+ years it has spread its reach globally; taking in trips to places such as India, China and Iran. Other stop offs include Russia, the Philippines, the UAE, Mongolia and Chile.

It brings together doctors, neurologists, neuropsychologists and therapists in all relevant disciplines.

The idea is simple; any country can apply, and the faculty ‘flies in’ to deliver an expert training programme in a short, intensive time period.

Trainees learn the skills required to develop and implement neuro-rehab services, while the trainers learn about the issues and challenges faced in those countries.

The WFNR, which has around 5,000 members and brings together 40 national societies around the world, funds the costs of the travel.

The host country provides food, accommodation and local travel for the visitors.

“We can go anywhere in the world,” says Tracey Mole, executive director of the WFNR at its HQ near Newcastle upon Tyne in North East England.

“It was set up to respond to requests from countries who needed training or expertise in neuro-rehabilitation. That could be something very specific such as stroke training, or it could be sending people to where they already have a training programme in place to help out, or sending a speaker to a conference or a meeting.

“Neurorehabilitation is still in its relative infancy, but in some parts of the world it's practically non-existent. The aim is to provide basic training in countries where there is very little knowledge of neuro-rehab, and very few professionals in that country working in the field.”

The faculty also works with government officials from the country, to help them recognise and

INSIGHT

Globe trotting: Photos from Flying Faculty trips to various countries including (top right) Iran, where Barbara Wilson (second from left) is pictured with fellow delegates.

understand the need for neuro-rehab in that part of the world.

“It’s not just to put on a training programme, but to develop an interest in the field in that area and to get people involved in creating a national society. That's a great way to get people in the area to work together… and for people working in those areas to be able to network with the rest of WFNR, so that they have access to all the knowledge that's available. That's a pretty big thing, especially when you've got a country with perhaps only three neurologists.”

Professor Barbara Wilson went on her first trip with the Flying Faculty to Chennai in India in 2014, where she and others collaborated with Indian psychologists to deliver a neuropsychological rehabilitation workshop, which was deemed a great success.

She returned to the country with the WFNR in 2017 for a six-day programme on acquired brain injury in Kolkata, and believes the visits have improved her practice.

“In India, there are so few neuropsychologists for such a huge country and they have to work a lot more closely with families, so that has influenced me,” she says.

“It is a two-way thing, a question of learning from each other and not just us taking things to them.

It’s very much two-way traffic.”

Not only developing countries can be lacking in terms of their understanding and

implementation of neuro-rehab, however.

“The same is happening in the States,” says Barbara.

“They do almost no rehab now, all neuropsychologists do is assessments, and that’s not what rehab is about.”

Barbara puts this down to, “managed care, insurance companies and medicine for profit, not for the good of the people”.

Meanwhile, the Flying Faculty faces its own challenges.

International travel is reportedly becoming increasingly difficult in the current climate, with the US tightening its immigration policy.

Tracey is seeing more and more members coming up against barriers with visa applications, particularly when travel involves Middle Eastern countries.

“We went to Iran but it was very difficult,” she says.

“We had people who were reluctant to go because we knew there was a probability that they wouldn't be able to get back into the US after they’d been there.”

Barbara experienced this at first hand.

Despite being the only Brit ever to be granted an award from the National Academy of Neuropsychology in America, the 2015 Iran trip caused problems on her return to the US. “I was in Iran for a week and it was the most wonderful hospitality and terrific treatment.

"But because of that I was no longer welcome in the States.”

Barbara was not deemed eligible for the US Visa Waiver and instead was forced to undergo an intense interview at the American Embassy in London. She was eventually granted her visa, but is now reluctant to return.

“I was grilled for two hours it was horrible. All I was trying to do was make their brain injury services better.”

This is a goal commonly shared by members of the Flying Faculty which, despite the challenges presented by the task of flying a group of health professionals to often unstable countries across the world, continues to reach new heights.

The WFNR now has specific funding available for education and training to support the initiative.

It is actively encouraging more countries to apply, to allow it to spread neuro-rehab skills and knowledge even further afield.

“We’re here, we’re willing and able to assist,” says Tracey. “We've got funding available now and we've got the expertise.”

And with experts such as Barbara and Wayne on board, the group is bound for success in its mission to provide the very best neuro-rehab training to health professionals across the globe.

“I want the best for survivors of brain injury, and I want the best throughout the world,” Barbara says. “That’s why I do it. My raison d'être is to make life better for survivors of brain injury.”

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TECHNOLOGY

A new spin on mobility tech New technology is giving wheelchair users the freedom to reach places they never thought possible, as actor David Proud tells NR Times.

At Hatfield House, in the Hertfordshire countryside on a typically wet English summer day, actor David Proud is taking a pretty special set of wheels out for a spin.

The former EastEnders star has the condition spina bifida and has always used a wheelchair to get around. He was, therefore, an ideal candidate to test drive a unique innovation in mobility technology.

AddSeat has been created to allow wheelchair users the freedom to reach places they previously wouldn’t have been able to.

The Swedish invention, which was recently launched in the UK, has been developed over several years, shaped by continual monitoring of customer feedback and reworking of the design to fit their needs. The device is based on the market's best Segway PT Gyro, offering groundbreaking driving control. It can turn on its axis and is able to take on almost any terrain, from snow and sand, to the country tracks at Hatfield House.

“There are so many things to like about it,” says David (pictured on page 67).

“It's embracing new technology, which is amazing, and it really handled everything I chucked at it, in terms of all the different terrains I came across.

“I live in the country so I would probably be using it every single week, going about and exploring.

Just to be able to go to different places, like the park, without even having to think about it was great.”

Chief engineer Ian Thompson was partly inspired

by Professor X’s wheelchair in the X-Men films while working on the project. He was also motivated by the need to improve the usability and comfort of mobility vehicles generally. The

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initial idea, however, is credited to Swedish Paralympic Gold medallist Marit Sundin.

The gyro wheelchair is built on a durable chassis, with a height-adjustable seat, allowing users to sit higher for eye-to-eye conversations. With a footprint as small as a manual wheelchair, getting the AddSeat into an elevator or transporting it in a car is relatively easy.

The built-in AirRide works as a shock absorber making obstacles such as pavilions and roots less annoying. Meanwhile, the seats are designed for maximum comfort, inspired by those used by long-distance truck drivers who spend hours in their seat. As a result, the AddSeat user can also happily spend all day in the chair without discomfort.

“It is really comfortable, and I felt really safe in it," says David. "It was a lot sturdier than I thought and the seating was very springy."

Unlike in a manual chair, David didn’t have to worry about becoming too tired, giving him the freedom to be out and about all day, spending more quality time with family and friends.

And, despite initial concerns about how long the battery would last, he was most impressed by the power range of the chair, which allowed him

to be out for the full day.

“You see other devices which are battery operated and the battery only seems to last about two minutes! But actually you could run this all day, quite happily, so that was really unexpected.

“The range would probably be the biggest consideration for me in terms of investing in one. The battery technology in the AddSeat means that it's useful for a lot more of the day than other chairs I've used.”

There were other unexpected benefits too, such as having hands free to hold an umbrella.

“In my manual chair, I need two hands to push it, so I wouldn’t even hold a brolly,” says David, who wouldn’t have been able to go out in the rain were in not for the AddSeat.

“It seems like the smallest little thing, but I’m out, getting fresh air, I can hold a brolly and move on terrain I wouldn’t normally be able to move on. Being able to go places and do things.

It’s priceless.”

However, as with most cutting-edge technology, the AddSeat is relatively expensive, setting wheelchair users back around £12,500.

TECHNOLOGY

This, for David, is the only downside, and the reason why he returned to his manual chair following his test drive.

“It is the future technology, completely. It's just the Tesla of wheelchair technology. For a lot of users, that price point is just out of reach.

“Inevitably when new technology comes out, there isn't much thinking about the cost and over time it will become more affordable to the masses. I’m always big on championing great new technology to get the manufacturers selling enough so that they can bring the price down.

“For the people that need it, it's not a luxury, it’s something that can really open up a whole lot of activities for them and their families.”

David would like to see AddSeats being sold to organisations, such as parks, visitor centres and stately homes, for their visitors to hire.

"Then I'd be able to go to my nearest stately

home and hire one, for say, a payment of £10 for a couple of hours, to be able to go and enjoy it with my family. It would be lovely to have more places like that.

“It's great fun and it really does turn a lot of heads… and I think a lot of kids will love it.”

Hopefully one day, in the not too distant future, all wheelchair users will have access to mobility technology such as the AddSeat.

“I would encourage more people to actually have a go. It would be lovely to see more wheelchair users embracing the battery technology, in their mobility devices.

"Just imagine how amazing the world would be if every wheelchair user had one of these. It would just be incredible,” David adds.

For more information on the AddSeat visit www.addmovement.com.

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“It’s a really, really lonely place to be...”

A SPECIAL REPORT ON BRAIN INJURIES AND DOMESTIC VIOLENCE

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SPECIAL REPORT

Studies suggest up to a third of women, and one in four men, will experience violence at the hands of a partner at some point in their lives. A black eye may be hard to hide, but a traumatic brain injury could remain undetected indefinitely, as Sarah Sinclair reports.

Paula Walters was strangled by her boyfriend in 2006.

“I remember him putting his hands around my throat and thinking, ‘I’m going to die’.”

For years afterwards she kept forgetting things, struggling to concentrate and losing control of her emotions. At her lowest point, she even tried to take her own life. What Paula didn’t know, was that her symptoms were not because she was “crazy” or “stupid”.

They were the result of a brain injury sustained in the strangulation.

Paula survived, thanks to a neighbour who found her severely beaten and took her to hospital. But neither she nor the medics thought to consider the possibility of a brain injury at the time. It wasn’t until an MRI scan after a car crash in 2017 revealed the extent of the problem, that the connection was made.

Even now, Paula battles with the symptoms caused by the damage done that night. “It’s a really, really lonely place to be,” she says.

But Paula is not alone. In the first communitybased study of its kind, researchers in Ohio found that 81 per cent of domestic violence survivors reported being hit on the head.

More than 50 per cent were hit so repeatedly that they couldn’t remember exactly how many times. Meanwhile, 83 per cent said they had been choked or strangled. Many are likely to have experienced both repetitive head injuries and strangulation, a deadly combination that could lead to memory loss, difficulty understanding, loss of motivation, anxiety and problems with vision and hearing.

The research indicates that high numbers of domestic violence survivors are living with undiagnosed, unrecognised brain injuries.

And no one yet knows what this could mean for them in the long term.

“Although we know it’s very common that

domestic violence survivors experience blows to the head, neck and face, we were not expecting to see the numbers that we did,” says Julianna Nemeth, assistant professor of health behaviour and health promotion at Ohio State University, and lead researcher on the study. “It’s not just that most survivors accessing services have had exposures that can lead to brain injury, but the number of times they reported it.”

While previous research has linked brain injury to domestic violence, this is the first study to gather such detailed information from the field.

Researchers interviewed female survivors not only from shelters but those accessing a wide range of community services.

Like Paula, many in the study had been experiencing lasting physical and mental health problems as a result of their

experience, but had never considered that it could be a brain injury.

Instead they were blaming the abuse, and in many cases, themselves.

“People that we’ve talked to struggle with ongoing mental health issues, suicide ideation, substance use and physical health issues, such as concentration and issues with vision, hearing and balance,” says Nemeth.

“Many survivors were ascribing those symptoms to the abuse or trauma, but not recognising that it could be a brain injury, and not because they are crazy, because their abuser has told them that.

“Just putting symptoms in front of people, and providing the information that these symptoms have to do with a brain injury, gave some survivors a sense of relief.”

Dr Eve Valera an assistant professor in psychiatry at Harvard Medical School, published one of the first studies examining the prevalence of intimate partner violence (IPV) related to traumatic brain injury (TBI) in 2003. She first became interested in the link when working in a women’s shelter while at university, but at that point there wasn’t a single piece of literature on the subject.

Valera interviewed 99 women, from shelters and the community, and found that around three quarters had sustained at least one

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mild TBI from their partners, and half had sustained repetitive brain injuries. The number of brain injuries and severity was also negatively associated with measures of memory, learning, and cognitive flexibility in the women, and these women were much more likely to experience higher rates of depression, anxiety, post traumatic stress disorder (PTSD) and general distress.

“One in three women will experience at least some physical or sexual IPV after the age of 15, and if you look at the numbers that I have, you’re talking about millions of women walking around with undiagnosed, unrecognised repetitive head injuries,” she says.

“These are our daughters, our mothers, our friends, our colleagues, our partners.

Everybody knows somebody who has experienced this, it's virtually impossible not to - even if they may not tell you.”

Valera is now working on a larger study, partly replicating those which have examined concussions in athletes, in order to explore the potential long-term consequences of these injuries for women, and how they might contribute to ageing and the development of neurodegenerative diseases, as seen in those suffering from chronic traumatic encephalopathy (CTE). She hopes to bridge the gap between the lack of research on the topic compared with that on concussion in males.

“It’s an international public health epidemic,” she says. “If you think of the numbers, it’s far more than athletes, far more than in the military. We have all these resources and studies on male athletes and there's nothing like that with respect to women experiencing IPV. “We’ve not even scratched the surface, but we do know enough to know that this is dangerous and we need to find out exactly how it's affecting women in the long term.”

Valera has seen women in their 40s and 50s with histories of repetitive head injuries, who are now struggling to remember how to spell certain words, or help their children with their homework.

“It could be that huge swathes of the population worldwide have been negatively affected in their older years because they

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sustained years of abuse to the head,” she adds.

But while the long-term impact remains uncertain for now, the immediate dangers are far more clear-cut.

“People with concussions can’t process information as well, and the idea that they can navigate a potentially dangerous situation drops significantly if you're dealing with a concussion on top of everything,” says Valera.

The complexity of their situations also means that someone sustaining a concussion as a result of IPV, is less likely to make a good recovery. According to Valera, not recognising or addressing the potential brain injury or concussion means they are unlikely to seek immediate medical care or take a break from their daily activities, both of which are vital for making a full recovery. Other factors such as being under acute stress, injuries elsewhere on the body and sustaining repeated concussions with relative frequency without giving injuries time to heal, are not conducive to optimum recovery.

“If they do go to the ER, it’s likely for a broken bone or blood coming from somewhere.

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

The symptoms are not being recognised by those who are in a position to help survivors either. Data suggests that frontline staff anticipate the number of women with a concussion coming into their care as far lower than the number actually is, and many don't feel comfortable addressing brain injury with their clients.

“We really need to start understanding this better and getting this information out there to women, and all the different stakeholders who interact with these women.

“If you don't realise they've got a brain injury you're going to see them in a very different light. We need to be approaching women that have been in this situation with the idea that they may have sustained a concussion and factor that into how we care for them.”

The Ohio study interviewed 62 staff members from five agencies across the state and, according to researchers, professionals such as advocates, healthcare providers and law

enforcement personnel are not considering that the individual they are dealing with could be behaving a certain way because they are suffering from a brain injury.

“Advocates absolutely want to help the survivors that are coming into their services, but we haven’t made the link yet as a service community between the potential for brain injury and the symptoms we’re seeing in front of us,” says Nemeth.

“We assume that the symptoms we see are because of psychological trauma or potentially mental health or other substance use issues.”

In direct response to the study’s findings, the Ohio Domestic Violence Network has developed the CARE (Connect, Acknowledge, Respond and Evaluate) model, an intervention tool which provides free resources to survivors and service providers to help them identify when someone may have a brain injury and how to respond appropriately to get them the care they need. The next steps involve developing protocols for all services that come into contact with survivors, to ensure that brain injury is always put on the table as a possibility.

“We need to rule out brain injury instead of ruling it in,” adds Nemeth.

Elsewhere in the US, PINK Concussions, the first ever non-profit organisation for women and girls with brain injuries, is also working with women’s shelters to try to increase awareness among frontline staff.

“The shelters that we’ve spoken to have been overwhelmed, but what we say is that we don’t need you to diagnose brain injury, we just need you to be aware of it in the same way that we ask sports coaches and parents to be aware of brain injuries,” explains founder, Katherine Price Snedaker.

“I don’t think it’s anything that workers aren’t already dealing with. It’s the reason clients aren’t showing up to appointments on time, that they are cranky or irritable, or they don’t have all the details. You may see them as non-functioning and irritable people, but if you see them as someone with a brain injury that might allow you more patience and understanding.”

A brain injury could also be the reason that a survivors’ story is inconsistent, or that they

SPECIAL REPORT

may appear to be under the influence of drugs or alcohol. This is something which Valera tries to convey to police officers dealing with domestic disputes.

“How someone looks after they've sustained a brain injury is a lot like someone who's intoxicated. They may be dizzy, disorientated, vomiting or seem confused and may not remember. Yes, often there are drugs and alcohol involved, but that doesn’t mean it’s the culprit for what you’re seeing there.”

It’s like a lightbulb moment, Valera says, when people realise what is really going on. But how has something so obvious gone under the radar for so long?

A general lack of understanding of IPV, combined with the stigma that survivors face, means it is often easier for everyone to keep the problem hidden.

“IPV is so stigmatising that individuals don't want to admit to it,” says Valera. “There's so much victim-blaming and misogyny involved, that it's not easy to own it and say ‘that happened to me’.”

Especially as so often when a woman does speak out, she is faced with the question: Why doesn’t she just leave?

Approximately three quarters of intimate partner murders occur while a woman is attempting to leave, or after they have left.

“It’s not a silly belief that a woman may actually be killed for leaving,” says Valera.

And it’s even more difficult to speak up for those women who are further marginalised in society.

“Women are already fighting the stigma of domestic violence and trauma, and brain injury is an invisible illness, so you have invisible people with invisible injuries,” Price Snedaker explains. “And if they are a woman of colour or there’s a language barrier - all these barriers stack up. We have very few women of colour that come forward. That’s a group that we really need to reach out to more.”

IPV is a topic which people not only don’t understand, but don’t want to understand, she says.

“No one likes to think about it and people don't necessarily think women are worth it.

“People have an impression that it's just a problem for other people - those in the

Why men injured in domestic violence must be encouraged to speak out too

ghettos, the drug addicts and the poor people - but it absolutely diversifies all socioeconomic classes.”

Paula Walters actually worked with trauma victims in the same hospital where she was treated, yet the true extent of her injuries still went unrecognised.

“As much as I know about trauma, I totally missed the strangulation part of the brain and the effects that it has had on my body,” she says.

“My friends and family have watched me try to end my own life. That all could have been avoided if the right people had had the right knowledge.”

In order to make it part of the public conversation we need to get comfortable being uncomfortable, says Valera. “[Women] are being dragged down the street, thrown out of cars, having refrigerators thrown on them, their head stamped on with work boots, smashed against cement floors, or hit with a baseball bat.

“We need to start talking about IPV as if it's not this horrible disease or crime. It's something that is happening to women all over the place.

"We can't just keep looking the other way or saying it's their fault.”

The studies cited in our domestic violence report are focused entirely on female victims of intimate partner violence.

However, men, of course, may also suffer brain injury at the hands of their partner or a family member at home.

The latest figures from the Crime Survey for England and Wales for the year March 2018, show an estimated two million adults aged 16 to 59 years reported domestic abuse during the period.

Of those, 695,000 were men. The real figure for both genders is thought to be much higher. Stigma, fear of retaliation and lack of trust in the police are among the deterrents to reporting such incidents, say researchers at University of South Wales (USW) who run the Compass programme, which helps men to consider themselves as victims, challenging gender stereotypes.

The US body, the National Coalition Against Domestic Violence (NCADV), meanwhile, estimates that one in four men have experienced some form of physical violence by an intimate partner, compared to one in three women. This gap widens, however, when the severity of the attacks is measured. While one in seven women have been injured by an intimate partner, this falls to one in 25 among men, NCADV says.

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SPECIAL REPORT

When science and social impact get together…

A collaboration between a neuroscientist and a women’s shelter has led to a groundbreaking project supporting survivors of domestic violence, through brain injury research. And it all started on Tinder...

It started, as with many modern love stories, with a swipe. In 2015, Paul van Donkelaar, a recently divorced neuroscience professor met Karen Mason, a woman working with survivors of intimate partner violence. They started dating and fell in love. To begin with, they were just another couple who happened to have found their happily ever after through online dating. But it soon became clear that there were bigger forces at play.

“We’re definitely unique,” says Karen, who is executive director of Kelowna Women’s Shelter in British Columbia, Canada.

“The fact that the universe decided to put Paul and I together, when I am the executive director of an organisation that provides shelter to women fleeing violence, and he’s a neuroscientist with an expertise in concussion. There’s clearly some universal plan afoot.”

Not long after they began dating she came across an article highlighting an epidemic of traumatic brain injury (TBI) among survivors of intimate partner violence (IPV).

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As a professor of neuroscience at the University of British Columbia in Canada, Paul has been researching brain injury in the context of sports concussion for more than 20 years. But while much has been done to explore the impact of head injuries on athletes, the studies on IPV are still relatively scarce. He started to question why more work wasn’t being done - “I didn’t have a good answer,” he admits.

One in three women, and one in four men, will experience some form of IPV in their lifetime, according to the US-based National Coalition Against Domestic Violence (NCADV). In Canada, statistics show that 207,000 women will experience a severe violent episode at the hands of a partner, each year.

Of those women who seek help, either from medical professionals, A&E departments or women’s shelters, as many as 90 per cent report symptoms consistent with concussion.

“For every man who suffers a concussion playing the sport they love, 7,000 women suffer the same injury at the hands of the man

they love,” Karen announced in her and Paul’s 2017 TEDxTalk ‘Ahead of the Game’.

“I realised that this was something that was probably going on with most of our clients and I insisted that we needed to do something about it,” she says now.

“We know that most physical violence within relationships is based on blows to the head and neck and there’s also the strangulation aspect. Most women experience physical blows to the face, head and neck, and strangulation, so brain injury is a natural implication of that.

“The stories we hear are extreme. One woman has spoken about the number of times she was thrown out of a moving car, and the occasions on which he repeatedly smashed her head against the floor.

"It is distressingly common.”

With their individual expertise, Karen and Paul were well placed to make a real difference to these women. In 2016, they launched their project Supporting Survivors of Abuse and Brain Injury through Research (SOAR) - a collaboration between the University of British Columbia and Kelowna Women’s Shelter. In June 2019, they received a US$1m grant from the Canadian government’s department for Women and Gender Equality, to continue the research for another five years.

The study takes several approaches, both scientific and community-based, to improve the quality of life for survivors of IPV. “We’re in a position to create some promising practices that may change the way that women’s shelters interact with their clients, the referral network and the way healthcare systems and community-based supporters accommodate and support women who have experienced IPV,” says Paul.

The fact that the government has supported the project so substantially is noteworthy in itself, and shows a recognition and understanding of the desperate need for this research.

“It’s groundbreaking. It’s very important to have direct funding supporting research around this topic, because it could have a huge impact on the quality of life of participants themselves, and in the way practices are done,” Paul adds.

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“The goal of this specific funding is to create a blueprint that can be used across Canada, both within the healthcare system, and within community organisations that support women of IPV. That’s our ultimate goal.”

Recruiting participants from the Kelowna Women’s Shelter, Paul and his team are measuring physiological changes such as blood flow, to better understand the characteristics of brain injury in survivors.

They are also carrying out assessments for psychological comorbidities such as posttraumatic stress disorder (PTSD), anxiety and substance abuse.

He is using assessments which have proved to be successful over many years of studying concussion in athletes.

Sports related concussions and the link between contact sports and CTE are a growing concern for athletes.

The Centre for Disease Control (CDC) now estimates up to 3.8 million sports related concussions occur every year in the US and more than 100 NFL players have been diagnosed with CTE at the VA-BU-CLF Brain Bank in Boston.

While studying the effect of repetitive impacts

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to the head in contact and non-contact sports, Paul’s research was among the first to show that certain markers of nerve cell injury were elevated following multiple hits, and that these could be linked to a higher number of concussion-like symptoms such as headaches, dizziness and confusion.

Concussions sustained through IPV, however, are more complex to dissect.

“It’s clear that people who have experienced IPV are very likely to have a brain injury as a result of that, but it’s not like in a sports concussion situation where it happens at a sporting event, there are lots of witnesses and you can very quickly do an assessment and determine that a concussion has taken place,” says Paul.

“In the IPV population quite often its months to years before they seek help and so the injuries tend to be remote in time and tend to interact with some of the comorbidities.

"It’s really important to disentangle all of those factors and get a good sense of how much of the challenges they are currently facing are due to the head impacts they have received as a result of their experience.”

The information will then be used to develop

tools and training resources for frontline staff and services who come directly into contact with survivors of IPV, to help them provide more effective support.

Frontline workers will also be trained in how to spot the signs and symptoms that someone is suffering from a brain injury, to help them flag up vulnerable women.

Women who may come across as “difficult”, suffer from behavioural issues, memory loss, or struggle to complete basic tasks that would allow them to move forward into a life free from abuse, are actually most likely displaying symptoms of an undiagnosed brain injury.

“For the gender-based violence sector, this is so critical as it is not something that we have ever taken into account before,” says Karen.

“For those of us who work in the industry, it’s going to play a huge role in creating new support systems when we’re trying to help women be healthy and better.

“If you’re coming to this without any previous knowledge that perhaps there are other factors at play such as a brain injury, your level of empathy and patience, and ability to support that woman is severely diminished.

We should be approaching every woman we

SPECIAL REPORT

serve based on an understanding that she probably has suffered at least one, if not more, brain injuries.”

This could be as simple as making small adjustments such as interviewing a client in a calming, dimly lit, environment away from other activity, as opposed to a brightly lit, noisy room.

“A simple step like that is very specifically directed at supporting someone who has a brain injury, and is something that frontline workers and shelters could be doing right now,” says Karen.

Their long-term goal is to create a communitybased support referral network, bringing various support systems together, from medical care to occupational therapy and speech pathology, so that survivors who may have sustained a brain injury have access to a wealth of support on hand.

Paul is also developing a Concussion Awareness Training Tool (CATT), a web-based utility, originally designed for use in sports concussion. It has proved hugely successful for educating and increasing awareness of concussion and TBI in the sports industry, and it is hoped it can do the same for those working with survivors of IPV. “The idea is to create a new module of the CATT online, specifically for those working in the IPV sector, with the goal of increasing awareness of TBI in the population and then disseminating that as widely as possible,” he says.

“We hope to have that up and running and in place by next year.”

In the meantime, SOAR is already beginning to see results on the ground, with Kelowna Women’s Shelter leading the way.

“It’s the thing that is in mind for staff whenever they do an intake with a new client, or whenever they are dealing with a particularly challenging client," says Karen.

“Five years ago that wasn’t the case, so we’re definitely seeing change.

“I know other shelters are now thinking about brain injury and I’ve had executive directors from other shelters tell me that it has changed the way they approach their clients.”

But it’s the survivors of IPV themselves who have seen most of the impact.

The fact that someone wants to listen and

Dynamic duo: Paul van Donkelaar and Karen Mason acknowledge their experience has given them a sense of empowerment.

“For women experiencing IPV this is their normal,” Karen explains. “It might be normal to wake up and be dizzy because of the physical fight they had with their partner last night, or forget things all the time and he tells her she is just stupid. She internalises all those messages and it might never cross her mind that she actually has a physical condition that is a direct result of how her partner treats her.

“We’ve had women go through this process and almost have a sense of empowerment at the end, because they feel like they have a label for this, that it’s not their fault, and maybe there are things that can be done to help them.”

And ultimately, that is what the project is all about.

“The reality is, women make up more than half the population, and at least a third of them, statistically, will be in this situation.

"Many, if not most of them, will see some sort of impact to the head and possibly a brain injury,” says Karen.

“Brain injury can be a hidden injury and IPV is also often an invisible problem. In 2019, we’re still dealing with some of that shame and stigma, it’s still an issue that many people prefer to pretend doesn’t happen.”

Paul and Karen are not those people. The couple are committed to increasing research into the impact of concussion beyond what might be seen in athletes, says Paul: “We know helping them achieve a healthy life, free from abuse, is good for all of us.”

It’s a good job then, that they both swiped right.

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REHAB EQUIPMENT

Lift off for Takeji’s creations Japanese inventor Takeji Ueda is hoping to revolutionise patient transfers with his range of products which combine the principles of physics and innovative textile design.

Images: (left) A gentleman models a pair of Plus-pad jeans, (right) Lifty in action.

Okayama prefecture, in western Japan, is famed as the powerhouse of Japanese denim.

A centuries-long history of textile making and dyeing – and a few serendipitous events, including the decision of one manufacturer to shift from school uniforms to American-style attire - ensured jeans became big in Japan from the 50s onwards.

And this heritage helped to inspire inventor Takeji Ueda in developing his first product for people with mobility difficulties in 2012.

Takeji’s father was suffering with the worsening effects of bone cancer at the time and his mother was struggling to look after him.

Meanwhile, their hometown of Sendai had just been ravaged by the 2011 Tohoku earthquake.

The family moved south west to Okayama.

Takeji, who has a PhD in physics and was working for a microchip manufacturer, wanted to develop a product to help his parents.

Inspired partly by Okayama’s denim-clad

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history, his first creation was conceived.

He says: “I thought my family should move to the west side of Japan to be safe, while I stayed working in the north and later moved to the US for work. I noticed my father was gradually getting worse and so eventually I quit my job, moved to Okayama and started my new company. I was still working in the high-tech industry but simultaneously wanted to do something for my parents.”

He set himself the challenge of making it easier for his mother to transfer his dad in and out of chairs and wheelchairs.

“I noticed robotics and harness equipment were too large and expensive. Japanese homes tend to be very small, while my mother does not like using machinery or electronics. I thought about devising a product that did not involve machinery. My father’s bones were very fragile and he required a hip protector. But hip protectors are not particularly comfortable and are unattractive. I believe that if people are

comfortable and wearing something that looks like conventional clothing, they will feel happier.”

Firstly he developed ‘Plus-pad jeans’, for anyone with a heightened risk of trips and falls – and related bone fractures.

To the untrained eye, they look like a conventional pair of casuals. But the product is actually a hip protector disguised in Okayama denim, produced in the jeans hotspot of Kojima city.

Hidden internally are 6mm-thick shock absorption pads which soften with body temperature for comfort and are removeable.

They reduce the shock of falls to a tenth of the level felt without the product, its creator says.

Also in Takeji’s stable, and forged by Okayama’s denim masters, are his ‘Lift-assist’ jeans.

The key additions here are two transfer-aid handles’; straps on either side, running from the hip down the outer side of each thigh.

These are designed to enable family and professional carers to transfer wearers, for example, from a wheelchair into a car.

Both products, sold through Takeji’s firm Action for UNiversal Design (AUN), have proven popular in Japan, a nation where older people are particularly active. At 85.77 years, Japan’s average life expectancy is second only to that of the super-rich playground Monaco (89.32). Its ageing population, meanwhile, is growing faster than that of any other nation.

AUN’s flagship product today is ‘Lifty’, which is billed as a simple and effective transfer aid shaped by “biomechanical analysis”.

The device enables the manual transfer of a patient without risking lower back pain for the carer. It also reportedly prevents falling risk generally, of both the carer and patient.

The Japanese Ministry of Health, Labor and Welfare revised guidelines in 2013, stating that care providers must take countermeasures using “welfare tools” such as hoists to prevent lower back pain among carers. The advice, says Takeji, is not always followed.

“The guideline is still not adhered to sufficiently at nursing homes and hospitals – perhaps because the hoists, mechanical standing aids and robots tend to be large and expensive. Also, operational time takes longer than with manual handling.

“Lifty uses the principle of leverage and requires no muscular force or twisting motion

REHAB EQUIPMENT

Takeji Ueda (right) started his AUN shop in Kurashiki, a popular sightseeing spot in Okayama. The shop is filled with stylish products for people with disability, which, he says, sets it apart from the typical "welfare equipment store". (Top left) His Lift-assist jeans. to move the patient, reducing the risk of lower back pain.”

Lifty (pictured bottom right) comprises pads which cushion the user’s lower back and buttocks while they sit in a wheelchair, conventional seat or perhaps in a vehicle.

Using the protruding straps and support provided via the optional knee strap, the carer is able to manoeuvre the individual appropriately. When the patient leans forward in their seated position, the pulling force required is reduced through the principle of leverage. Grasping handles, meanwhile, is believed to be more effective than holding the individual’s centre of mass.

According to Takeji’s own research, when a patient is able to lean forward, the carer can lift a person twice their own weight with minimal effort. When they cannot lean forward, the carer can move someone equal to their own weight.

“I invented this for the home but professionals

in Japan are now using it too as it solves one of the problems of nursing care experienced all over the world.

“Using the basics of physics, we are completing the task which normally requires a machine or harness, without electricity or heavy metal parts.”

Takeji insists that using the product is entirely safe – as long as carers follow the official training videos and instructions.

Currently, two Japanese universities are conducting trials for academic papers, due to be published soon.

In the meantime, Takeji is hoping to take it beyond Japan into Europe, the rest of Asia and the US, and has been busy at various trade shows. In the UK, he is hoping to appoint a distributor.

To date it has been particularly popular with occupational and physical therapists plus – unexpectedly – dentists, in transferring disabled people into the dreaded dentist’s chair.

“We believe Lifty is different from other nursing care equipment in that it doesn’t require attachment to the person or a complicated operational process. It’s easy, washable and has anti-slip properties.”

Lifty

For more information email info@ energyfront.jp or visit: http://www.aun.blue/en.

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INTERVIEW

“Why it’s time to talk up our profession” Lesley Pope was recently installed as chair of UK body the Independent Neurorehabilitation Providers Alliance (INPA).

Here she tells NR Times why raising awareness of neuro-rehab is a key priority.

Lesley Pope spent six months travelling the length and breadth of the UK, visiting more than 50 independent care units, before taking on the role of chair last December. The experience has given her a unique insight into the breadth of services provided by members, and a greater understanding of the ongoing challenges they face.

“My role for INPA is really pulling everybody together and helping to shape the direction of travel,” says Lesley. “In the months ahead, the membership will continue to focus on driving excellence in neurorehabilitation; but also on raising awareness of neurorehabilitation and the contribution of the private sector, on the back of the all-party parliamentary group for brain injury [APPG] report, which came out at the end of last year.”

“The report highlighted how woefully short of beds we are in the UK, but there are private providers who have beds, and in a lot of parts of the country the contribution they can make is not fully recognised.”

INPA, a group of 17 private neuro-rehab providers who collectively run over 50 units across the UK, was launched by neurologist Professor Mike Barnes in 2004.

His aim then was to form a strong voice in the UK sector, ensuring neuro-rehab was delivered in quality environments, by trained and experienced staff in a caring way to assist the rehab process.

Lesley, who originally trained as a speech and language therapist and was previously director of rehabilitation services at HCA Healthcare UK, was appointed by the group in August 2018 to revise the inspection standards; and

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Lesley Pope to undertake facility visits to review members’ services against the new criteria.

Now at the helm as chair, she is partly focused on building the profile of the providers she represents.

“We’re trying to raise awareness of the fact that alternatives in the independent sector are there. People working in our members’ units have spoken to families, as well as clinicians, to encourage them to consider private providers as a very real alternative for people who need treatment.”

Lesley has identified discrepancies between different UK regions in terms of the

willingness of public healthcare decisionmakers to engage with independent providers.

As a result, INPA is encouraging its members to learn from one another’s successes and gain insights into how they can develop stronger relationships with the communities in which they operate.

“We want members to share knowledge about how they have developed those relationships and what information is required to support them.”

INPA will also introduce member-run training sessions to help raise the profile of neurorehab in general.

“We’re really trying to empower our members to get out into their local communities and draw on the experience of other members to help them to do that. Many of our members already do a lot in their local communities and are working with local groups to raise awareness. We’re just trying to pull all of that together and share that knowledge and experience.

“We’re hoping to introduce some training sessions which will help to train staff and get new people interested, such as clinicians, therapists and nurses, who maybe haven’t considered neuro-rehab before.”

A key challenge facing many independent providers is funding and Lesley, therefore, hopes INPA’s approach will help to raise the profile of members among commissioners too. “[Our members’] biggest concern is being able to provide a service, quickly, to people that need it. Some of their frustrations are the length of time it can take from when somebody is referred to them to actually getting them admitted and the funding approved, and the ongoing battle to keep that funding. We’re working with our members with regards to raising the profile with commissioners.”

And what of the speculated recruitment challenges that could be caused by Brexit and its possible impact on the inflow of foreign healthcare workers?

“Generally, few members have talked to me about the fact that they are finding it difficult to recruit as yet, or that staff are leaving because of Brexit; although, some are beginning to raise concerns specifically about nursing recruitment.

INTERVIEW

UK neuro-rehab in numbers

14,600 Estimated number of in-patient neuro-rehab beds needed for the UK’s annual caseload of around 300,000 acquired brain injury admissions.

4,600 Actual number of in-patient beds currently, leaving a 10,000 shortfall in bed capacity.

1,400 Number of the above which are within the NHS – a reduction of 100 between 2013 and 2018.

“On the whole, however, recruitment seems to be fairly stable. I think that’s because those units are dedicated to what they do, they are able to train and retain key staff.”

The passion, dedication and commitment from staff working in the sector, is something which struck Lesley while visiting members.

“Whether it’s neuro-behavioural, acute or slow-stream rehabilitation, the passion and commitment amongst the staff I met is life-affirming. They are very much patientfocused and wanting to make a positive change in their lives.

“It is a passionate specialty. I think you have to be passionate to get into it because it can be physically and emotionally hard work for

everybody involved.”

While technology may bring new, exciting opportunities for treatment, it is the dedicated professionals that drive good neuro-rehab, says Lesley.

“Technology offers opportunities for treatment as well as making people’s lives easier, so it’s certainly very exciting, but you need to have the people who understand what they are doing with it, people who know and understand neuro-rehab.

“If you don’t have the basic grasp of neurorehab and acquired brain injury, you’re not going to be able to utilise that technology to that person’s best advantage. At the end of the day it comes down to people working with people.”

700 Increase in bed capacity in the independent neuro-rehab sector between 2013 and 2018.

Source: The all-party parliamentary group on acquired brain injury report ‘Time for Change’ published in September 2018.

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INSIGHT

Going the distance with a formidable foe It’s not uncommon for boxers to get injured in the ring, but the sport has a hidden danger, which could haunt them years after retirement. In Las Vegas, the fight capital of the world, Dr Charles Bernick is leading the largest study to date into punch drunk syndrome among professional athletes. The findings could help to identify the “breaking point” for brain injuries, he tells Sarah Sinclair.

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On a Saturday night in February 2018, 31-yearold British boxer Scott Westgarth spoke of his love of the sport as he emerged triumphant from his match against Dec Spelman in Doncaster, England.

Hours later he collapsed in his locker room and was rushed to hospital, where he tragically died of head injuries sustained during the fight.

Then in July this year came two more boxing fatalities within a few days of each other. Both the Russian boxer Maxim Dadashev, 28, and 23-year-old Argentinian fighter Hugo Alfredo Santillan died from brain injuries, prompting fresh calls for drastic changes in the sport.

INSIGHT

Boxers know they take a risk every time they enter the ring. Success is measured by the number of blows to the head delivered to your opponent, and has therefore long been controversial among campaigners. Brain injury charity Headway has even called for it to be banned on several occasions. But while we often hear about what can go wrong inside the ring, boxing has a hidden danger less talked about.

American pathologist Dr Harrison Martland first described a group of boxers as being “punch drunk” in 1928. His research paper gave a name to the phenomenon of boxers with a history of repetitive head trauma developing neurological symptoms. Today punch drunk syndrome is better known as Chronic Traumatic Encephalopathy (CTE), the degenerative brain disease increasingly linked with rugby, football and injuries sustained in military service.

CTE, currently only diagnosed after death through brain tissue analysis, has been confirmed in more than 50 former boxers, according to the Concussion Legacy Foundation in America, using data from the VA-BU-CLF Brain Bank in Boston.

“To put it simply, the more head impacts somebody gets, the greater the risk," says neurologist Dr Charles Bernick, from his office at the Lou Ruvo Centre for Brain Health, in the self-proclaimed fight capital of the world, Las Vegas. "It’s just that boxing is probably the sport that gets the largest number of head impacts, because that’s the whole goal.”

In 2011 Bernick and fellow researchers at the Ruvo Centre, which specialises in research and care of neurodegenerative diseases, launched the Professional Athletes Brain Health Study (PABHS). It is now the largest longitudinal research project into the effects of repetitive impacts to the brain in a group of professional combatants.

The study currently has over 800 participants, at various stages in their careers; from active fighters at different levels to retired athletes of varying lengths of time – and others who are transitioning between the two.

“CTE is a neurodegenerative disease, it’s in the same category as other disorders such as Alzheimer's and Parkinson’s, but although

we’ve known about it for almost 100 years, nobody really understood it."

Symptoms of CTE don’t generally begin to appear until years after the head impacts. So while a boxer may seem to have walked away from a fight unscathed, the signs of long-term brain damage could show up in later life.

Former British Gold Olympian boxer Audley Harrison has spoken recently about the longterm impact his career has had, as he battles permanent brain damage, sight and balance problems and behavioural issues, such as mood swings.

Early symptoms affect the individual’s mood and behaviour, but as the disease progresses, some may experience memory loss, confusion, impaired judgment, and eventually progressive dementia.

From two experts at Boston University, Dr Ann McKee and Dr Robert Stern, we know that CTE can take two forms. Some with CTE initially present with behavioural symptoms, usually in their late 20s or 30s, while others first show signs of cognitive problems, typically beginning in their 40s and 50s. What we don’t know is why it affects some people and not others.

“We thought this was a condition that we

needed to learn more about, and being in Las Vegas, we had the means to do it,” says Bernick.

With his team, he set out to find out how CTE evolves, what the risk factors are and why only some boxers go on to develop the disease.

“We started working with key players, with the Nevada Athletic Commission (NAC) and some of the main organisations and top boxing promoters, to begin recruiting fighters, alongside a controlled group of non-fighters.

We’ve been following these people on a yearly basis over that time, to try to really understand what happens.”

The open-ended study was set to last for at least 10 years, but as the decade draws to a close it looks likely to continue for as long as the funding is in place. Eight years in, it has made some stand-out findings.

While symptoms may not show up for many years after an athlete has left the ring, according to the research, in some cases, changes in certain areas of the brain can be detected by MRI methods within just a year of being exposed to repetitive head injuries.

These changes correlate with a decline in performance on tests of cognitive function,

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INSIGHT

such as memory and thinking tasks.

The effects also differed between active and former fighters, with some evidence to suggest the disease actually progresses more quickly once a boxer retires. And changes were also influenced by an individual’s genetic make-up, in older, former athletes.

Bernick says: “In some individuals you can track change over time, in certain areas of the brain, and it seemed to differ between active and retired fighters. Once they retire, there’s a subset of people that have this progressive process which may affect different areas of the brain. This is really interesting stuff as we try to develop ways to identify who might be at risk of CTE.” The study has also discovered blood markers - certain proteins released from injured brain fibres which leak out of the brain and can be

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measured in the blood. They could be used to identify brain injury and follow recovery, and changes in MRI imaging that may be able to track an injury. It is hoped this will lead them to identifying the “breaking point” - the point at which repeated head trauma begins to cause cognitive problems for a boxer, and could lead to serious brain conditions such as CTE. Researchers are also exploring how changes in behaviour correlate with brain imaging changes. Behavioural issues are common in the early stages of CTE, with symptoms including impulse control problems, aggression, paranoia and depression.

In April 2019, Bernick and co published a paper linking symptoms of depression in some athletes to structural brain changes associated with CTE; but the pathologist is

eager to state it as "cause and effect".

“Depression is complicated, because there’s the issue of what happens in the brain and the issue of other surrounding factors, such as family history, life circumstances, drug and alcohol use, which makes it difficult to tease out how much is really from the head impact.

“The prevalence of depression in our group was the same as the general population of men at that age, but in those who have depression there was a correlation with smaller regional volumes in certain areas of the brain. It suggests that there is a relationship between what’s changing in the brain and the manifestation of depression and other behavioural changes.”

There is also preliminary evidence to suggest that symptoms of depression could even appear before noticeable cognitive changes in

INSIGHT

someone with CTE. Far from banning boxing, however, researchers hope that the findings will help to guide new practices to improve brain health in the sport and ultimately, make it safer.

“There is no question that there is great value in boxing. It’s an outlet, and there’s a clear societal benefit to these sports.

"It’s just a matter of how we make them safe.

“In the US, even though the main risk of fighting is to the brain, there is no requirement for any brain tests, except for an MRI scan.

“Looking at the risk factors, whether it's genetic, environmental or lifestyle, might help to protect an athlete as they play these sports.”

Few boxers have spoken publicly about CTE, perhaps for fear of giving the sport a bad name. Yet, those in the industry have been right behind the study from the beginning, says Bernick, particularly representatives of the NAC, which provides the athletes for the study.

“The first goal of the NAC is to advocate and protect the safety of unarmed combatants,” says Dr Timothy Trainor, consulting physician to the NAC. "When we partnered with the Ruvo Centre years ago, it was the vision of both the NAC and the Ruvo Centre to see if we could make meaningful progress in the diagnosis and treatment of CTE and brain injury. Anything we can do to promote the safety of an inherently risky sport is our first objective.

"The NAC has stressed the importance of this study to all of our licensed unarmed combatants, including boxers, mixed martial artists and kickboxers, and we are hoping the data gleaned from the study can better help us protect the athletes from harm, both short and long term.”

As a result of the study, the NAC is now looking into ways to actively protect its fighters, and identify potential problems sooner.

“We have learned that we need to focus more on functional studies as opposed to static anatomy tests like MRI/MRA,” says Trainor.

“Certainly, the study is pointing us in other directions that need further study.

"One specific test that we have looked at extensively is the ‘C-3 Test’, a cognitive

function test performed on an iPad. We have tried to implement this in our jurisdiction, however, the logistics of conducting such a test have proved insurmountable. We are continuing to try to find tests that will not be logistically prohibitive to the athletes.”

But, he adds: “Just the fact that the studies are being performed has raised the awareness of brain health to the fighters, trainers, and all involved in these sports.”

Things in the boxing ring are certainly changing. Fighters are reportedly sparring less and choosing their opponents more carefully.

In a 1973 study by British pathologist John Corsellis, the boxers participating were exposed to between 300 and 700 bouts over the course of their careers, in addition to sparring and other training.

Today a professional boxer would rarely see upwards of 50 fights before retirement.

But as far as Bernick is concerned, this in

no way means athletes today don’t run a substantial risk of suffering a neurological hangover from their careers.

“What we’ve learned from 40 to 50 years ago may not be exactly what the risk is for modern day fighters,” he says.

“But we know that the more exposure you have to head trauma, the higher the risk of CTE.” Thankfully, many in the boxing world appear to be waking up to dangers of the sport and taking research evidence on board.

Bernick would like to see such recognition in other sports too.

“If all sports took some responsibility for the long-term health of these athletes, not just when they are playing, I think it would be a real step forward for safety in sports."

Read more about CTE in sport online at nrtimes.co.uk.

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CLINICAL PRACTICE

NeurodisabilitY -: An unrecognised risk factor for scurvy

By Dr Vijay Palanivel and Dr Anjay Pillai.

Scurvy is a disease resulting from a lack of vitamin C (ascorbic acid) and has been clinically recognised for centuries. In 1747, James Lind, in his landmark work “A Treatise on the scurvy” first demonstrated the link between diet and scurvy. (1) The evolution of scurvy in the developed world can be broadly described under three distinct eras: a. Scurvy in sailors due to extreme dietary depletion at sea which was successfully prevented following pioneering studies by James Lind. b. Scurvy in large populations affected by social upheaval (eg wars and famines) in subsequent years. c. Re-emergence of scurvy towards the end of 19th century in infants from affluent families due to usage of heated milk and proprietary foods. (2) The understanding that scurvy is caused by a biochemical deficiency followed by the milestone event of isolation of vitamin C in the 1930s led to changes in dietary practices and widespread food supplementation. This led to the near eradication of scurvy in the latter half of the 20th century.

It is suggested that in the current era, scurvy is confined to people with poor socio-economic status, malnutrition and alcoholism. We would like to propose neurodisability as a previously undescribed risk factor for developing scurvy, particularly in the paediatric population.

A six-year-old girl known to have unilateral cerebral palsy (right hemiplegia) was referred to the paediatric department in a district general hospital with history of a fall followed

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Figure 1

Figure 2

Figure 1: Antero-posterior radiograph of right knee 1. White lines of Frankel (thin arrows) 2. Bony spur (thick arrows) Figure 2: Lateral radiograph of right knee 1. Wimberger ring (thin arrows) 2. Disruption of alignment of proximal tibial physis (thick arrow)

Figure 3: Coronal T2 weighted image of right thigh 1. Diffuse bone marrow signal change (thin arrows) 2. Subperiosteal collection (thick arrow)

by inability to bear weight on the right leg. Her hemiplegia was present from early life and presumed to be the result of a cerebrovascular accident in the foetal or neonatal period.

An MRI scan done at three years of age had demonstrated infarction of the cerebral white matter. At presentation, she was noticed to be tired and lethargic. She was in pain and did not want to be examined. She appeared undernourished. Neurological findings were in keeping with the pre-existing right hemiplegia.

A few petechiae (tiny blood spots) were present over the lower limbs and gums. The right knee was swollen, with reduced range of movement of the knee joint. The rest of the examination was unremarkable. She was known to be a very ‘fussy’ eater and was previously treated for iron and vitamin D deficiency.

She was mildly anaemic with haemoglobin of 11.1 g/dL. Other blood counts including a total and differential white cell count, urea and electrolytes and liver function tests were normal. The calcium level was also normal.

Various possibilities including missed fracture, infection, malignancy and inflammation were considered.

Plain X-rays of the right knee (Figure 1 and 2) revealed osteopenia (thinning of the bone) and soft tissue swelling. A sclerotic (thick) metaphyseal line was noted. Small bony spurs were present at the metaphysis (top and lower ends of the bones which contain the growth plate). There was a fracture involving the upper tibia (shin bone). Ultrasound showed an effusion in the right knee, with periosteitis (inflammation of the covering layer of the bone) involving the anterior aspect of

CLINICAL PRACTICE

the proximal tibia (shin bone). An MRI scan revealed a low T1 signal in the metaphysis of both distal and proximal femurs (thigh bones), and the proximal tibias (shin bones). This was matched by heterogeneous signal on T2 (Figure 3). There was a joint effusion in the knee and there was extensive subperiosteal fluid along the femoral shaft and proximal tibia. The clinical and imaging features were strongly suggestive of scurvy. A bone marrow aspirate was done to rule out malignancy as a cause of the bony lesions. Unfortunately Vitamin C levels could not be ascertained due to technical reasons involving the laboratory.

Treatment was started with oral ascorbic acid.

Her clinical condition improved dramatically.

Subsequent follow up documented clinical and radiologic improvement. Scurvy in children is often described as an uncommon or rare condition and there are not many reports in literature in the paediatric population.

However, half of the children reported to have developed scurvy through case reports and case series in peer reviewed journals in the 21st century had varying degrees of neurodisability (cerebral palsy, seizures, developmental delay, autism etc). This population group is not yet widely recognised as an at-risk group for scurvy. Subtle signs of early scurvy are even more difficult to pick up in this group due to learning and communication difficulties.

Feeding problems (neurological or behavioural) which are widely prevalent in these children might be a contributing factor. Children with neurodisability who are otherwise thriving and seem to have an adequate caloric intake are still at risk of undetected vitamin C deficiency.

(3) The small number of cases reported in peer reviewed journals might just represent the proverbial “tip of the iceberg”.

Scurvy is considered to be a diagnosis of exclusion based on history and clinical features.

However scurvy has classic radiological features which can be recognised on x ray which can help with the diagnosis. (4, 5) The most common radiographic finding in scurvy is bony demineralisation (osteopenia). There is preservation of the zones of provisional calcification at the ends of the metaphyses called the white lines of Frankel. The lucent line adjacent to this is the scurvy zone, an area through which fractures may occur. The classic

Pelkan bony spurs at the periphery of the zone of calcification are the result of healing of these fractures. Another classic finding is the fine white line named the Wimberger ring outlining the epiphyses (rounded end of the bone). Our patient clearly had the white line of Frankel, bony spurs, Wimberger ring and even a fracture in the tibia. MRI scans can provide additional useful information. (5) In our case, the diagnosis was supported by MRI findings such as heterogeneous bone marrow signal intensity and subperiosteal fluid and haematoma (bleeding). Vitamin C levels can be done but are not very sensitive and can be normal even in severe cases. The strongest indicator of disease is the resolution of manifestations after the administration of ascorbic acid. Oral and constitutional symptoms will usually resolve in 2 to 3 days, with petechiae, bone abnormalities and anaemia usually resolving within 2 weeks.

As demonstrated in our case, children with neurodisability are at risk of vitamin deficiency including scurvy. Many clinicians in the modern era may not be aware of the clinical features of this condition. Although rare, it is still present particularly in the context of neurodisability and a high index of suspicion is required for early intervention and successful treatment.

About the authors Dr Vijay Palanivel is a consultant in paediatric neurodisability at the Children’s Trust.

Dr Anjay Pillai is a consultant in respiratory paediatrics at Norfolk and Norwich University Hospital.

References 1. Lind JA. A Treatise on the Scurvy. Edinburgh, Scotland: Edinburgh University Press; 1753 1.

2. Rajakumar K. Infantile scurvy: a historical perspective.

Pediatrics 2001; 108(4):E76.

3. Noble JM, Mandel A, Patterson MC. Scurvy and rickets masked by chronic neurologic illness: revisiting "psychologic malnutrition".

Pediatrics 2007; 119:e783-e790.

4. Park EA, Guild HG, Jackson D, Bond M. The recognition of scurvy with especial reference to the early x-ray changes.

Arch Dis Child 1935; 10: 265-294.

5. Choi SW, Park SW, Kwon YS, Oh IS, Lim MK, Kim WH et al. MR imaging in a child with scurvy: a case report. Korean J Radiol 2007; 8:443-447.

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Court in the wheels of progress The Court of Protection is an influential force on neuro-rehab – helping to shape the care arrangements of vulnerable people who lack mental capacity, including those affected by brain injury and neurological conditions. Here senior judge HHJ Carolyn Hilder answers your questions on the inner workings of the authority amid changeable times.

The Court of Protection (CoP) makes decisions on financial and welfare matters for people lacking mental capacity.

It was created under the Mental Capacity Act 2005 and has a range of responsibilities, including deciding whether an individual has mental capacity, and appointing deputies to make decisions for people who lack it.

Deputies may be a friend or relative of the individual, or a professional such as a solicitor or accountant appointed by the court.

The CoP can significantly influence the work of professionals with clients with brain injuries and neurological conditions.

Brain injury case managers, responsible for managing the overall care of brain injured individuals, are particularly attentive to its activities and rulings.

They were given a rare insight behind the scenes of the organisation recently, with an opportunity to put questions to a key figure at the CoP, Senior Judge HHJ Carolyn Hilder.

Their questions, arranged via brain injury and complex case management body BABICM, came against a backdrop of major change in

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mental capacity-related decision-making.

A new model for determining deprivations of liberty in care, known as Liberty Protection Safeguards, come into play next year in a move which will hopefully speed up the delivery of justice for many vulnerable people, while many other developments are afoot.

Here’s what Judge Hilder had to say….

Case manager: Do you consider that any medical knowledge/experience of what it means to have a brain injury or cognitive impairment is required to make a judgment around capacity/best interests?

JH: One of the hats I wear is as a course director of training for the CoP judges.

Understanding the complexities of different types of impairments to brain function has been a feature of training, and in the last several years, there has always been a clinical psychologist to provide introductory training.

In our ongoing review training, we have, to date, had specialist input in respect of bipolar disorder, dementia, learning disability and brain injury. Last year, all of the CoP

judges had the privilege of hearing from a young man called William Hawkins, who suffered a very significant brain injury in a car accident. It was nobody’s fault so there were no damages to award, no case manager and actually no money either. So he wasn’t ever technically within the decision-making of the CoP. But over several years of extraordinary determination and courage, he has made more of a recovery than was ever expected.

He and his mother now make something of a mission of educating people about the impact of acquired brain injury, not just on the person but on their wider family and their struggles to secure adequate support and resources.

I can tell you that some of the judges left that presentation in tears. So to answer the question, I don’t think that medical qualification or experience is required for making decisions under the Mental Capacity Act – but I do consider that information about the nature of a person’s incapacity is an important part of the information which the judicial decision-maker has to consider. And, I do consider that the better the information and understanding of the condition, the higher the likelihood of reaching the best decision.

That is why you will sometimes see orders which specify what type of expert is required to produce an assessment capacity.

Where we are concerned with a person that has a complex or fluctuating condition, such as schizophrenia or bipolar disorder, a psychiatrist is likely to be required and similarly, with acquired brain injury, a neuropsychologist will be required. This [recognises] that complex conditions impact on capacity in ways that require an understanding, and an explanation to the court.

What are your thoughts on professional deputies taking on brain injured clients, in a scenario where they have no specific expertise or experience working with this unique client group?

I think this is meant to refer to property and affairs deputies who charge [a fee].

On the whole, that means solicitors, but actually, the meaning of professional in this context is getting more complicated via the latest iterations of Practice Directive 19B [part of UK CoP rules] - and the expanding

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commercial basis on which deputyship services are now offered. To me, the key is really the professionalism of the deputy, [in terms of] understanding the requirements of deputyship, which is a judicial duty carrying legal responsibilities, and performing that role with integrity and skill. It’s that kind of professionalism, in a case where a brain injured person has a very large number of challenges, which is more important than the professional qualification or experience with that particular type of injury. Of course, it’s gold standard to have both but I would not be in favour of saying that only a professional with experience of this type of brain injury is suitable to be appointed as a deputy.

That runs the risk of limiting the protected person’s access to services, and it runs up against patently obvious difficulties of how do you get experience if you can’t do it without experience in the first place. That’s where

The better the information and understanding of the condition, the higher the likelihood of reaching the best decision

case managers come in. A close working relationship between the many professionals that are likely to be involved in the life of a person with a serious brain injury seems to me likely to be the best way of achieving an optimal outcome.

The average time for an application to the CoP is taking too long. Whilst additional resources might help, are there any root and branch reviews planned to speed the process up? Failing to deal with applications expeditiously is letting vulnerable people down given that the court cannot deal with matters in a swifter fashion.

Let's not beat around the bush, I accept that justice delayed is justice denied. And I understand that applications too often take too long to resolve. The [applications process] taking X number of weeks may be perfectly

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acceptable in some cases and hopelessly inadequate in others. There is actually only one key performance indicator in CoP statistics and that is ‘16 weeks to complete a non-contentious property and affairs deputy application’. As of March this year, 35 per cent of applications are being concluded within that. Health and welfare applications are taking an average of four to six weeks to complete. But an average is meaningless to an applicant who wants his or her application determined. The reality is that we live in an age of austerity when resources are tight. At the same time, the number of applications for the CoP is on a constantly upwards trajectory, so there's a degree of inevitability to the result… But I do not believe any of us should wallow in defeatism about this. There are structural measures already in place to address this as soon as possible and there is the prospect of further development. Firstly we have a cohort of dedicated staff. They are human beings, who come to work with a skip in their step wanting to do something which they believe to be socially useful. I ask you in your dealings with them to start on the basis that they really are trying to do their best to help. More concretely, every single day there is an urgent business judge on duty so that applications which are genuinely urgent can be and are dealt with immediately.

Since October 2018, we have had for the first time a cohort of deputy judges. They've been a long feature of the civil and family courts but for reasons of history the CoP has not had a cohort of deputies until now. Most of those who were appointed have direct experience of CoP work as practitioners. And in February of this year, we secured some extra funding to have a blitz team of those deputies.

So in 10 judge days, those deputies cleared a backlog of 1200 non-contentious property and affairs deputyship cases, which reduced the waiting time to three weeks.

Unfortunately, in that same period, 920 new applications were received, so the overall effect was dispiriting and not as great as the efforts deserved. For the longer term, we have now secured additional funding for new and permanent posts of authorised court officers, increasing the manpower from five to eight.

More strategically, just before last Christmas

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it was announced that the CoP was taken out of the great [programme of court reform] which is sweeping across court services throughout the country currently. That was a blow in terms of anticipated investment, although it has had a positive effect on our staff in terms of our stability being assured.

Instead, we have a regime called ‘business as usual reform’. It means that the CoP will benefit from the reform processes as and when possible, within existing budgets. So I can’t promise a root and branch review, but rather incremental development.

The reality is that we live in an age of austerity when resources are tight.

At the same time, the number of applications for the CoP is on a constantly upwards trajectory, so there's a degree of inevitability to the result…

Which development at the CoP over the next 12-18 months are you most excited about and which will benefit P the most? Is there a timeframe for online submissions for applications and electronic bundles in the CoP? As you will gather from my response to the last question, there's not a huge amount of excitement here. I would get most excited about the development of online applications to the CoP. I think that that system is particularly well suited to property and affairs deputy applications. If it were possible, it would enormously reduce the workload of the court and therefore benefit P by speeding up the process. Unfortunately, I'm not really excited about it, because it is not yet on the horizon. There is a willingness but there are not the resources and so there is not a time frame either. Electronic bundles would have some potential advantages. Local authorities are accustomed to doing this in the family courts and there is a fair amount of pressure for them to be able to do them for the CoP too. I've seen a demonstration of one particular system, which seems to meet the needs of the court. But unfortunately that’s not being made available yet either.

So the two developments which I’m actually most excited about are the introductions of bulk scanning and dual screens. To my mind you can’t have one without the other.

But there are plans actively on the way to move to a system which is already operating in other parts of the courts system whereby the application, once made, doesn't go to any human brain in the central registry until it’s been to a bulk scanning centre somewhere

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else and turns it into electronic documents and reduces the amount of paperwork for the court. There is some suggestion that that might be up and running by Christmas.

Will the application process ever be made easier for lay deputies? It can be hugely time consuming to make an application, the OS fees are significant for P (and they are acting for a person they have never met) and the lay deputy has to either seek and pay for advice, or navigate the process on their own.

If you are a lay person that has found the application process too complicated, I can only offer the assurance that the court does its best as far as possible [to help you]. We operate a team of dedicated telephone enquiry options… The [application] forms are constantly under review for improvement.

Overall it is our aim to offer as courteous a process as possible.

Official solicitor fees are, of course, completely outside my domain. But it was to tackle the expense and delay of official solicitor involvement that the accredited legal representatives were essentially invented by the rules committee. It's taken a long time, and a lot of work on the part of the Law Society, to become a reality but there is now a cohort of them. The court has been able to appoint them for over a year. There have been few appointed so far but their numbers are gradually increasing. So if you have a case where you think an accredited legal representative would be appropriate given the nature of the issues, you can now make that request as part of your application.

It remains to be seen if that will simplify the process at all, but that is the hope and intention.

What are your thoughts on the amendments to the Mental Capacity Act around Deprivation of Liberty (DoL)?

Will the amendments help in making the application process and workload for the CoP more manageable?

I’ve kept a distant eye on various iterations of the Amendment Act because it’s important to know what’s on the horizon but its definitely not the role of the judiciary to wade into

legislative development. We do now have a final version so we can seriously think about how it will work. We know that the present intention is for the new Liberty Protection Safeguards to come into force on 1st of October 2020, with the final draft of the code to be made before Parliament several months before that in spring of 2020. It’s not appropriate for me to express views in case I am in due course called upon to determine issues, but we can look at the impact on the work of the court. There's a lot which is very difficult to predict, but at every stage of the development of the DoL jurisdiction, the predictions of numbers involved have been eye-watering but they have never materialised. You can speculate as to why, but it doesn't make it any easier to plan for.

On a structural level, the implementation of the Liberty Protection Safeguards will be the demise of the streamlined, Re X procedure.

[This process was put in place in 2015 to deal with large volumes of cases, allowing judges to make an order authorising a deprivation of liberty in uncontroversial cases “on the papers” – without an oral hearing, saving time and costs. This followed the 2014 Cheshire West judgement, when the Supreme Court clarified

the definition of a deprivation of liberty as a person being “under continuous supervision and control and not free to leave” the place they were in, regardless of whether this arrangement would be appropriate or ‘normal’ for a person with those particular needs. This exposed thousands of cases in which people were being deprived of their liberty by the arrangements made by the state and created a surge in cases for the court to deal with]. There won’t be a need for [Re X] and that will have a liberating effect on some resources.

Presently we have a whole team of staff which will be able to be deployed in other areas. I’m not getting too excited about that just yet because the indications are that there will be a time when they both run in tandem. My priority at the moment is to do what we can to make sure that the current backlog in the streamlined applications does not swamp the new system from the start. And to that extent, there are administrative meetings going on to see if there can be some progress in clearing that backlog as quickly as possible.

As to how it will affect the workload of the court, the Rules Committee has set up a working group which is considering forms and procedure.

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That has yet to produce anything substantive but the wheels are in motion. In theory, the Liberty Protection Safeguards should take a large tranche of people who currently need to come to the CoP and also to the family court out of the need for court orders.

General experience would suggest that there is going to be a new type of workload for the court and that’s going to be the challenge of LPS authorisation, but we have no idea how many appeals will be made or on what grounds. We approach the implementation of the new system in the spirit of optimism and we will see where it takes us.

We are depriving the liberty of 14 community dwelling clients. They each lack capacity around decisions relating to need for support, going out alone etc. Best interests judgment is that, to remain in the community, the least restrictive option is applied but this is still a (reasonable) deprivation. We have applied to the relevant local authority (LA) in each case.

Responses by LAs so far have been to deny responsibility, to say DoLS does not apply in the community, to refuse to respond to correspondence or to try and get a non-expert to find capacity (in one case) against experienced ABI team opinion. In 3 years, not one case has been progressed or resolved. Our approach has been designed with a leading public law firm. We quote judgments and charge our clients for our time. This feels unethical and a poor use of money. What should we do in these situations where the LAs respond in this way and do not seem to understand their responsibilities?

It's a story I hear often and probably goes a long way to explain the mismatch between the predictions of need and the actual numbers of applications. I’m afraid it all comes down to money. The local authorities have been saying ever since the Cheshire West case that they do not have the resources to apply processes as they should be applied.

The last vice president of the CoP, Sir William Charles, before he retired [in February 2018] did not mince his words in the line of cases which followed Re X and how the funding gap needed to be addressed. His last word

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This feels unethical and a poor use of money. What should we do in these situations where the local authorities respond in this way and do not seem to understand their responsibilities?

on this was SRK against Staffordshire County Council. SRK’s care package from home was arranged and provided without any input from the local authority. Care was supervised by a specialist brain injury case manager and provided by current carers. The local authority had no knowledge of SRK or his care arrangements until his property and affairs deputy wrote to them saying that there was probably a deprivation of liberty.

The local authority did an assessment and they shared that conclusion. And so it made an application to the court for authorisation.

The Secretary of State for Justice was joined as a respondent so she could address the circumstances and extent to which the state is imputable in any deprivation of liberty arising out of private care arrangements.

Everybody else said it was but the Secretary of State said it wasn’t. The vice president decided at the time that a welfare report had to be made to provide a procedure that protects the relevant person from arbitrary detention and so to avoid violation of the state’s positive obligation under Article 5 [of the Human Rights Act, which protects an individual’s right to liberty and security].

That was based on the premise that the state knows or ought to know the situation on the ground and that knowledge exists because the civil court awarding the damages and the CoP appointing the deputy – and the deputy when appointed should take steps to ensure that the relevant local authority with various safeguard elements knows of the regime of care. The Court of Appeal upheld Sir William Charles’s judgement. It sounds to me like the questioner is fully aware of all of this and is doing what they can to bring the situation on the ground to the attention of the local authority, so what then can be done?

I've seen applications made by the deputy under the streamline procedure, usually in situations such as this. My response has been to require the relevant local authority to explain why it should not be substituted for this applicant. So far, they have always accepted that they should be. Of course there are cost implications. In the Staffordshire case, the vice president expressly provided for the deputy to act as a Rule 1.2 representative in the annual reviews. [A 1.2 representative is

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Generally, it is my view that requiring a protected person to pay for the state to be able to meet its obligations is unattractive.

the name given by the court to a person who is able to consider whether from the perspective of individuals best interests you agree or do not agree that the court should authorise the individual's package of care and support resulting in a deprivation of their liberty].

That was possibly a reflection of the availability of funds for that from damages.

And the vice president specifically said that when damages are assessed, this should be considered carefully. Generally, it is my view that requiring a protected person to pay for the state to be able to meet its obligations is unattractive. If no one can be identified to act as a Rule 1.2 representative then it becomes a balancing act. Is it in P’s best interest to pay the cost of representation

so the application can be considered, in the case of no authorisation? It’s going to be a case-by-case decision that probably comes down to P’s resources. When I have required local authorities to justify why P should pay, miraculously an alternative solution so far has been found. Ultimately it must be acknowledged that it is wholly unacceptable for the state to be in violation of its obligations for a period of three years as described and I wonder why applications for damages have not been issued. That would be a best interests decision in each case.

Judge Hilder was responding to questions at the BABICM 2019 annual conference in Birmingham recently.

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EVENTS

DATES FOR YOUR DIARY

To list your event in NR Times contact editor@aspectpublishing.co.uk Please check with contacts beforehand that arrangements haven’t changed.

Events organisers are also asked to notify us at the above address of any changes or cancellations.

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OCT 19

NOV 19

08

05

Life of Brian

Mental Health Rehabilitation Conference: Changing landscape and collaborative approach with Cygnet Health

Follow Brian’s not-altogether-smooth progress as a brain injured child into and through adulthood, and consider the difficulties and issues his journey presents to those working with Brian and his family.

Leicester Marriott Hotel Grove Park, Smith Way, Enderby, Leicester, LE19 1SW. Contact secretary@babicm.org or 0161 762 6440 for details.

A free, CPD-accredited event featuring a busy programme and keynote speaker Lord Patel of Bradford OBE. Leeds Marriot Hotel, 4 Trevelyan Square, Boar Lane, Leeds, LS1 6ET. Contact events@cygnethealth.co.uk for full details.

11-12

03-08

Sleep Unlimited Open Courses

The ACRM 96th Annual Conference - the largest rehabilitation research conference in the world

Evidence-based information, insight and tools, which will deepen knowledge and understanding of this often-neglected area of clinical practice which has relevance and impact across clinical groups.

It is led by sleep psychologist Dr David Lee. The Studio 51 Level Street, Manchester, M1 1FN. Event also takes place in Bristol (at The Engineers' House on 8&9 November) and Edinburgh (at The Edinburgh Training and Conference Venue on 22&23 November).

Contact info@sleepunlimited.co.uk or 0191 580 0008 for full details.

The American Congress of Rehabilitation Medicine's (ACRM) conference in Chicago this year focuses on 'Progress in Rehabilitation Research'. It is comprised of the main CORE Conference and the Pre-Conference delivering a total of SIX jam-packed days of evidencebased educational content for the whole rehab team, individuals with disabilities and caregivers. The event features over 500 educational sessions, 40 courses and 300 symposia. The brain injury-related programme includes a special full-day, ‘deep-dive’ into the topic of ‘changing the narrative to hope; maximising brain health, function and participation following brain injury’.

See acrm.org for further details.

EVENTS

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2020 HIGHLIGHTS

UK Acquired Brain Injury Forum's (UKABIF) 11th Annual Conference 2019.

Neurobehavioural Disability after Acquired Brain Injury: Selective Topics Demonstrating Innovation

MAR 20

Bringing together a range of health, social and legal professionals together with voluntary organisations, care providers and campaigners. The aim of the event is to share good practice and information and to provide networking opportunities for those working in the field of acquired brain injury. Programme includes national and international insights on outcome and impact of traumatic brain injury and an update from three MPs on the APPG for Acquired Brain Injury. The Royal Society of Medicine, 1 Wimpole Street, Marylebone, London, W1G 0AE. Visit www.ukabif.org.uk or contact info@ukabif.org.uk / 03456080788 for more information.

Swansea University and Elysium Neurological present their fourth annual conference focussed on neurobehavioural disability after acquired brain injury. One-day conference brings together leading experts in the field to provide authoritative accounts of the very latest clinical innovations, strategies and cutting-edge developments in the management of the debilitating symptoms of neurobehavioural disability.

9am - 4.30pm, Swansea Marriott Hotel, Maritime Quarter, Swansea SA1 3SS. Contact claire.williams@swansea.ac.uk for more information.

11-12 European NeuroConvention Europe's only trade event for brain and spine experts. Event features 200 innovative exhibitors, 150 CPD-accredited seminars and 35 masterclass sessions.

The NEC, in Birmingham.

See www.neuroconvention.com for more information and to book your free ticket.

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DEC 19

OCT 20

Neuropsychological Assessment and Treatment for People with Non Progressive Brain Injury

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07-10

Encephalitis Conference 2019

11th World Congress for NeuroRehabilitation

World renowned Professor Barbara Wilson OBE delivers this intensive workshop aimed at case managers, therapists, rehabilitation providers and solicitors.

9am - 4.30pm, George Fox Suite, Friends House 173-177 Euston Road, London.

For full details visit www.abisolutions.org.uk.

A full day conference with renowned encephalitis experts speakers, a dedicated poster presentation area and a wine and nibbles networking opportunity. CPD points will be awarded. Royal College of Physicians, 11 St Andrews Place, London, NW1 4LE. Find details on www.encephalitis.info.

A global neuro-rehab conference in Lyon, France. See www.wcnr-congress.org for full details.

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CLOCKING OFF

Pea-brained science “We couldn’t believe it at first — we thought our electrodes were malfunctioning,” exclaimed researcher Alysson Muotri recently. For the tiny brains grown by her team from stem cells had just begun transmitting brainwaves similar to those of a pre-term baby. University of California scientists created stem cells from human skin then altered them to mimic the development of the human brain in an embryo. Weeks later, the pea-sized brains began spiking in electrical activity. What on earth happens next in the study is anyone’s guess but ethical questions loom large over this and other such projects which are edging the world closer to the human clone.

Turn left for languages, scientists say Left-handed people may be better than right-handers at verbal tasks, because their brains are wired differently, scientists claim. A University of Oxford study found that the language areas of the left and right sides of the brain communicate with each other in a more co-ordinated way in the average left-handed person. Researchers used data from the UK Biobank to analyse the genomes of approximately 400,000 people, just under a tenth of which were left-handed.

Excelling at languages seems scant reward versus the many pitfalls of lefty life, such as inky fingers, struggling to write neatly in spiral notepads, having to restring guitars and the right-handed scissor challenge.

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Year of the sunflower?

It’s only taken several decades but the message that not all disabilities are visible may finally be hitting home in Britain. The term ‘hidden disability’ has long been used as a concise way of explaining the impact of brain injury to others - and is fast becoming a reference point for a whole range of other conditions, including those related to learning difficulties, mental health and visual and hearing impairments. Helping to spread the message in recent years has been the excellent sunflower lanyard scheme. It was devised by the OCS Group UK, which provides support services to UK airports, and design firm Tabbers Limited. Wearing a sunflower lanyard is a discreet sign that you have a hidden disability and may need additional help when in a public place.

It was launched in 2016 at London’s Gatwick Airport, where over 10,000 have been collected. Since then, its spread has been less sunflower-like and more akin to a vast cloud of dandelion seeds. Nine UK airports

have followed Gatwick and one - Manchester – even has a Sunflower Room, where visitors can escape the terminal hustle and bustle.

Train stations have also joined in and, more recently, supermarket giant Tesco has begun trials at 15 stores, with its peer Sainsbury’s launching it in 40 stores. Meanwhile, the case for hidden disabilities has been further advanced with news that the UK’s free disability parking scheme has been extended to include all hidden disabilities. Changes to the Blue Badge scheme came into play in England at the end of August, with new guidance issued to all local authorities. The move prompted some motoring groups to bemoan an impending lack of parking spaces – with one report showing an average 30 existing Blue Badge holders per disabled parking space in council-run car parks.

However, the change served as a great PR in terms of raising awareness of hidden disabilities – and will be welcomed by many drivers with non-physical disabilities.

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