NR Times Q2 2018

n e u r o r e hab

NR

times

issue 6 Q2 2018

atomic age Microscopic miracles in stroke recovery home front When loved ones and carers collide

QUARTERLY

superman v paralysis Fighting to liberate the severely injured

disaster zone rescue Care in the toughest conditions on earth

notes from the edge... of pioneering MS treatments

new leaf Is rehab ready for the cannabis revolution?

rebel yell standing tall against service cutbacks

Christchurch Group is the UK’s leading provider of neurological rehabilitation, caring for and rehabilitating patients with complex brain and spinal injuries and neurological conditions in eight highly specialised centres across the country.

Our interdisciplinary therapy teams and industry-leading clinicians are committed to providing the very highest levels of rehabilitation through individually tailored, goal driven rehabilitation plans for all of our residents.

All Christchurch Group centres offer residents a rehabilitation pathway delivered through expert Lead Consultants working alongside psychologists, behavioural specialists, nurses, occupational therapists, physiotherapists, speech and language therapists, dieticians and rehabilitation assistants.

To find out more or discuss the funding options available, please contact our referrals team on 07595 655239 or email referrals@christchurchgroup.co.uk

Neurobehavioural rehabilitation

Specialist nursing

Spinal injury rehabilitation including ventilated care

Long term maintenance

Stroke rehabilitation

Outpatient rehabilitation

Community support and outreach

For more information visit:

ChristchurchGro

www.christchurchgroup.co.uk

Christchurch Group Neurological Rehabilitation

welcome

EDITOR'S NOTE

Welcome to the latest edition of NR Times, your quarterly update on issues affecting professionals working with brain and spinal injuries and neurological conditions.

Anyone at the neuro-rehab World Congress in Mumbai recently will surely have been encouraged by what they saw. All the talk of new treatments and approaches offered plenty of reasons to be cheerful. But something else raised hopes about the future too: the sheer amount of global collaboration going on among rehab professionals.

And this is exactly what is needed in the face of an escalating epidemic. Brain injury has emerged as one of the world’s great healthcare challenges, partly because people are living longer – and also as science plumbs deeper into the mysteries of the mind; offering new hope where there was once none. Up to 60 million people reportedly suffer a traumatic brain injury each year globally. The monetary cost is a monumental US$400bn, experts say. A lack of consistency in care and diagnosis around the world is recognised as one of the major barriers in tackling the issue on the world stage. Thankfully, the international neuro-rehab community is fighting back. Judging from NR Times’ trip to Mumbai, professionals are more willing than ever to cross national, disciplinary and commercial borders for the greater good. The power of collaboration is being felt in so many ways in rehab.

As we report this quarter, it is saving the severely injured from disaster zones, funding near-miracle cures for cases that would previously have been written off and preventing closures and cutbacks.

Global collaboration is also at the heart of our cover story this issue. Momentum started by the

swashbuckling superhero Christopher Reeve in the fight for the spinally injured, has been maintained by his family since his untimely death. His son Matthew tells us why his dad's dream of a world of empty wheelchairs is no longer as far-fetched as it once was. This edition also revisits the case for medicinal cannabis and asks whether it should be fully legalised in the UK. Some believe it could revolutionise the treatment of brain and spinal conditions; others are sceptical. We welcome your input on this or the many other topics covered this quarter, via my email below.

Andrew Mernin Andrew@aspectpublishing.co.uk

Published by Aspect Publishing Ltd in association with UKABIF 20-22 Wenlock Rd, London, N1 7GU. Registered company in England and Wales. No. 10109188. All content ©2018 Aspect Publishing Ltd except on p30-33 which belongs to the author. 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 The latest from the world of neuro-rehab

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NOTES FROM THE EDGE | of ms treatment A Mexican adventure in experimental care.

34

atomic age Microscopic miracles in stroke recovery

24

wonder drug?

Could cannabis transform the management of brain and spinal conditions?

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trouble on the home front When carers and loved ones collide.

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contents

46

In search of a world of empty wheelchairs.

50

time to rebalance the scales Why rehab measurements need updating.

cover story

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condition update: HUNTINGTON'S DISEASE What's new after landmark breakthrough?

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on the hunt for rehab evidence Inside the body that keeps research in check.

vive la resistance!

Standing up to service cutbacks.

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the shifting plates of disaster zone rehab

Spinal injury care in the toughest conditions on earth.

events Dates for your diary in the months ahead...

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clocking off

Frozen brains and alien music appreciation...

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analysis

Challenging times for vital research projects NR Times assesses the current climate affecting the university researchers who shape neuro-rehab’s progress.

The influence of university research is evident across the spectrum of neuro-rehab practices, treatments and approaches.

Scientific endeavours on campus drive new drug development, a greater understanding of the brain and the robust data needed to support interventions.

But recent news points to several challenges which could limit university lab activities and their potential to improve our understanding and treatment of brain and spinal conditions.

Among them is a perceived shift in university research towards so called “Grand Challenges” or “moonshots”.

A US report says universities are increasingly pooling their research resources into “these ambitious goals that have the potential to capture the public’s imagination, increase support for policies and investments that foster innovation, and serve as compelling “North Stars” for cross-sector and multidisciplinary collaboration.”

Grand Challenges often bring together funding from charities, industry and government and, according to the report, are a growing worldwide trend at universities. They can involve vast sums of funding.

UCLA, for example, has a vision to enable Los Angeles County to enjoy 100 per cent renewable energy, 100 per cent locally sourced water and enhanced human health by 2050.

The estimated cost of this effort is US$150m.

Such goals provide stability to researchers, could potentially change the world – and generate great PR for the universities involved. They may marginalise less high-profile research areas, like brain and spine conditions, however.

As Times Higher Education (THE) reports, some academics are “uncomfortable with the amount of activity being centred on fashionable, big-banner goals such as curing cancer”.

James Wilsdon, professor of research policy at the University of Sheffield, told the publication that the 06

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analysis move towards challenge-directed research was

policy to boost international research and attract

“broadly positive” but also needs “close monitoring”.

new talent.

He said: “Clearly there is a need to monitor quite

CaSE executive director Dr Sarah Main said:

carefully the overall balance of funding within the

"To relieve pressure on the system, roles on the

system and the underlying health of disciplinary

Government's Shortage Occupation List and

fields or questions that are less ‘fashionable’ in

PhD level roles should be made exempt from

policy terms – especially when, as now in the UK,

the Tier 2 visa cap. This would allow recognised

you’ve got a significant shift towards new

skills shortages to be filled and would create the

challenge-directed funding programmes across the

headroom to allow the visa cap to operate effectively

system as a whole."

for other business roles."

Where would research into brain and spinal injuries

Whether or not the government agrees will emerge

and neurological diseases stand if every university

in the coming months as the Brexit machinations

joined the Grand Challenge movement?

speed up.

Last year’s landmark Huntington’s trial was

For now, there are plenty of pan-international

described by UCL’s professor John Hardy as

research projects ongoing which offer hope for

“potentially, the biggest breakthrough in

improvements in neuro-rehab.

neurodegenerative disease in the past 50 years”.

The most recent example reaching NR Times

Yet, despite proving that the defect that causes the

centres around a blossoming relationship between the University of Melbourne and Imperial College

disease can be reversed, it could hardly be described as “big banner” given Huntington’s relatively low

also created a dearth in data analysts and scientists

London. Having already collaborated on 4,000

profile in the public eye.

globally. The European Commission believes Europe

papers with its Australian peers, Imperial has

Although Huntington’s is a devastating disease, it

needs around 350,000 more by 2020.

launched a special research group with Melbourne

is not afforded the same widespread recognition

Funding and staffing university research labs in the

to develop new technologies to treat brain disorders.

as MS or MND – which themselves deserve greater

UK has become a divisive sub-topic of Brexit as it

Professor Simon Schultz, from the Department

public awareness.

approaches. On one side are concerned university

of Bioengineering, has won a grant through the

In the broad sphere of brain research, dementia

operators like Russell Group, which recently

UK government’s Rutherford Fund to bring three

is perhaps the Grand Challenge topic that most

lamented a 9 per cent fall in non-British EU PhD

researchers from the University of Melbourne to his

concerns people generally – understandably since

students. Most prominently on the other side of the

laboratory. We follow their work with interest (read

there are now around a million dementia patients

Brexit/research debate is the great British innovator

their full story online at nrtimes.co.uk).

in the UK alone.

James Dyson, who is unshakable in his optimism.

The Euro Brain Prize, a new grant for researchers,

In terms of funding, the UK government insists

See p62 for

just awarded its US$1.2m pot to an Alzheimer’s

Britain will remain part of the £62bn Horizon 2020

more on the

study. The British government also recently added

programme, which supports cutting-edge science,

changing influence

£40m to the UK Dementia Research Institute’s

until its end.

of research on

resources, taking its budget to £290m.

Meanwhile, in her Mansion House Brexit speech,

neuro-rehab.

Hopefully research into lesser known diseases – and

the Prime Minister said: “The UK is committed to

big banner ones - can co-exist and the perceived

establishing a far-reaching science and innovation

Grand Challenge threat does not materialise.

pact with the EU, facilitating the exchange of ideas

More pressing challenges facing uni research labs

and researchers. This would enable the UK to

are skills shortages in various disciplines. The UK

participate in key programmes alongside our

reportedly needs 700,000 more lab technicians

EU partners.”

by 2020, according to the Gatsby Charitable

Brussels seemingly feels the same way, with

Foundation. A national training centre has been set

European Council president Donald Tusk stating

up as a result, based at the University of Sheffield

in March: “We invite the UK to participate in EU

and backed by £1.1m in funding and investment.

programmes in the fields of research and innovation,

There is also a lack of healthcare scientists, National

as well as in education and culture.”

Audit Office stats show. At the last count in 2017, the

The research community, meanwhile, wants

NHS needed 2,530 more scientists. Many of these

specifics. The Campaign for Science and Engineering

roles are filled by university researchers and involve

(CaSE), made up of 40 universities, institutes,

collaboration with higher education institutions.

companies and research charities, wrote to the

Rapid progress in data acquisition technology has

government recently to urge a review of immigration

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Boxing ban call Brain injury charity Headway called for boxing to be banned following the death of British boxer Scott Westgarth.

Westgarth died in February aged 31, hours after a victory on points over rival Dec Spelman in Doncaster.

His was the third British boxing fatality in five years.

"Boxing is a senseless waste of life and the time has come for it to be banned," Headway’s chief executive Peter McCabe said. "Scott Westgarth and many others before him should not have been allowed to lose their lives or sustain needless brain

Average stroke age falls

injuries through sanctioned acts of deliberate violence. We are repeatedly told that all professional fights have doctors at the ringside, but serious questions need to be asked about the medical provision that was available for Scott's fight. There is simply no way to make boxing safe, and to allow more lives to be lost in this way is unacceptable and completely irresponsible."

Robert Smith, general secretary of the British Boxing Board of Control, told Press Association Sport: "I've spoken to the doctors and officials in charge and am satisfied with the procedures.”

The average age of people suffering strokes in England has fallen, according to the latest figures. The average age for men fell from 71 to 68 and from 75 to 73 for women between 2007 and 2016, Public Health England said.

The shift is partly due to increased stroke rates among 40 to 69-year-olds – up from 33 per cent to 38 per cent in the period.

There has also been a drop in the proportion of the over-70s having strokes, in part thanks to health checks which focus more closely on stroke risk factors.

Prof Julia Verne, Public Health England's director, told the BBC that the findings showed "everyone needs to be aware of the signs".

"Calling 999 as soon as you see even one of the symptoms develop - in the face, arms and speech - is essential. Speedy treatment will help prevent deaths and disability," she said.

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Cannabis campaign launched

Members of the public are being urged to lobby their MPs to help make medicinal cannabis legal for people with MS. The MS Society has been running an online campaign on its website which allows users to Tweet and email their MP to push for change.

The charity explains: “It shouldn’t be illegal to be able to sleep through the night.

“Evidence shows that cannabis for medicinal use can relieve pain and muscle spasms for some people with MS, when other treatments haven't worked. “Right now, cannabis for medicinal use is illegal. We don’t think it should be illegal for people with MS to get relief from pain and spasms.”

Drug resistance increasing – report

Cases of epilepsy which are resistant to drugs could be on the rise, according to a new study.

Researchers analysed the number of cases in the so-called 7MM group of healthcare markets – the US, France, Germany, Italy, Spain, Britain and Japan.

They predict that drug-resistant epilepsy will increase from 1,601,859 prevalent cases of active epilepsy in 2016 to 1,711,113 cases in 2026 in those countries.

The study was carried out by data and analytics company GlobalData.

It estimates that approximately 70 per cent of epileptics do respond to medication and manage to control their seizures.

Healthcare analyst Ana Fernandez Menjivar said: “There are several reasons why patients do not achieve full seizure control when taking anti-epileptic drugs (AEDs). Frequently, people who are considered to be drug resistant have been misdiagnosed and do not actually have epilepsy; therefore, it is essential that the diagnosis of epilepsy is reviewed when AEDs fail to control seizures. However, for patients who have a correct diagnosis of epilepsy, finding the right treatment is crucial. New AEDs for the treatment of all epilepsy syndromes are constantly being developed. Therefore, treatment for refractory cases should be reviewed often to find the appropriate drug combination that will help patients achieve seizure control.”

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INPA is a membership organisation for independent providers who specialise in neurorehabilitation our members provide over half of the brain injury rehabilitation in the UK.

Setting standards for neurorehabilitation Developing focused training programmes Organising collaborative research

Representing providers of: • Neurorehabilitation • Neurobehavioural rehabilitation • Spinal rehabilitation • Treatment for those detained under the Mental Health Act 2007 • Specialist nursing including nursing for ventilated patients • Respite • Community services • Day care

What we do: • Raise the profile of independent providers within UK neurorehabilitation.

• Provide a collective voice for members in the media and to inform policy.

• Make recommendations to industry.

• Run a recognised training programme for rehabilitation assistants.

• Carry out research into the collective results of our work.

• Ensure members adhere to a set of recognised standards.

www.in-pa.org.uk

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Sunshine lessens MS risk

Drug shows potential for brain protection New research shows how the novel drug QNZ-46 can help to lessen the effects of excess release of glutamate in the brain - the main cause of brain injury in stroke.

A new study shows how identifying the source of damaging glutamate in stroke leads to the discovery of brain protection with QNZ-46, a novel form of preventative treatment with clinical potential.

Existing studies show that restricted blood supply promotes the excess release of glutamate.

The glutamate binds to receptors, over-stimulating them and leading to the break-down of myelin the protective sheath around the nerve fibre (axon).

Previous studies have focused on the brain's grey matter - the area where all of the synapses operate.

The new study focuses on white matter - the part of the brain the connects all of the grey matter together - and demonstrates that the glutamate release from axons themselves contributes to damaging myelin.

The study, led by Professor Robert Fern at the Plymouth University Peninsula Schools of Medicine and Dentistry (PUPSMD), is the first direct comparison of vesicular fusion within different cellular components in white matter, and it reveals extensive fusion in axons - a mechanism previously thought to be absent from white matter.

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The findings support a rational approach towards a low-impact prophylactic therapy, such as QNZ-46, to protect patients at risk of stroke and other forms of excitotoxic injury (injury caused by excess glutamate).

Stroke is the second leading cause of disability and early death in the UK and demand for new drug treatments which can aid post-stroke recovery is growing.

Professor Fern says: "Strokes are known to be caused by loss of blood to the brain, and there has been no way to treat the condition [to date]."

"As much as rehabilitation can be effective, there's nothing you can do to heal the damage.

"This is why it has been necessary to look at how the problem is caused in the first place.

"Myelin damage results in severe functional deficit in the white matter of the brain, for example in ischemic stroke - caused by lack of blood supply.

"By identifying how this happens, we have been able to show how QNZ-46 can be used to prevent the damage.

"There needs to be further studies to fully understand how these findings can translate going forward, but to see that there are no negative side effects at this stage is a promising sign.

By continuing further studies, we can come up with even better forms of the drug to help in stroke treatment."

Living in a sunny area as a child can halve the risk of developing MS in later life, research shows.

A study led by researchers at the University of British Columbia in Canada suggests that growing up with a lack of vitamin D from sunshine in colder climates is an MS risk factor, even into adulthood.

Research author Helen Tremlett said: “While previous studies have shown that more sun exposure may contribute to a lower risk of MS, our study went further, looking at exposure over a person’s lifespan.

“We found that where a person lives and the ages at which they are exposed to the sun’s UVB rays may play important roles in reducing the risk of MS.” Her team looked at 151 women with MS and 235 people without the disease who lived in the United States. They compared UVB exposure by looking at the latitude, altitude and cloud cover in the different areas. Women who lived in sunnier climates with the highest exposure to UVB rays had a 45 per cent reduced risk of developing MS when compared with those living in areas with the lowest UVB ray exposure. The study, published in the journal Neurology, also found that those who lived in sunny areas between the ages of five and 15 were 51 per cent less likely to get the disease, rising to 55 per cent if they spent lots of time outdoors.

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Bionic power at the Royal Bucks The Royal Buckinghamshire Hospital is using exoskeletons to challenge the limitations caused by severe injuries and neurological conditions, as NR Times reports.

Exoskeletons can restore the ability to walk, and enhance quality of life in many other ways too, says Eva Sobonova, head physio at the Royal Buckinghamshire Hospital (RBH).

“They can also reduce pain and improve bowel and bladder function and spasticity.

Then there is the huge psychological impact," she adds. “Being able to stand up and make eye contact with people, and go outdoors again, are really beneficial psychologically.

With one of our devices patients can walk on uneven ground and up and down slopes, meaning they can venture into our gardens and go out into the wider community. This is highly motivating.”

RBH is the only UK facility with two types of exoskeleton available onsite. The Ekso GT is a wearable robot that helps individuals with lower extremity weakness to stand and walk with a natural, fully weight-bearing gait.

Walking is achieved by the user’s weight shifts or via a button, with motors driving the legs.

While this is predominantly a rehabilitation tool used in the hospital, RBH patients also have access to the more compact and portable Indego exoskeletal system. This can be quickly and easily fitted, making it ideal for community settings. Sobonova says: “The two exoskeletons complement each other.

We may use the Ekso to support the patient’s trunk and upper body and improve posture and alignment. As the patient progresses, we may need to improve dynamic movement of the trunk and balance in terms of shifting position, and therefore use the Indego.”

Inpatients at RBH may use the exoskeletons from a few times a week to daily, with outpatients typically having weekly sessions.

“Inpatients use the devices as part of their intensive rehabilitation that also involves a range of other technologies - and disciplines such as occupational therapy, psychology and speech and language therapy. The frequency depends on their functional goals. Some might be looking to improve strength, while others might simply use the exoskeletons for the psychological benefits of standing up.”

The intensity of therapy afforded by the exoskeletons is crucial to the successful outcomes they deliver.

“Restoring neural functions depends on repetition. In a centre without exoskeletons it may be possible to give patients bodyweight support over a treadmill but two or three people may be needed to move the legs to recreate the movement of walking.

Exoskeletons allow for much more repetition over a prolonged period.”

A recent beneficiary of exoskeleton sessions at RBH is 39-year-old spinal cord injury patient ‘John’ (name changed for anonymity).

Sobonova says: “He wasn’t getting any movement in the muscles in his limbs, he had very poor static and dynamic sitting balance and he could barely feel his trunk or his legs.”

An intensive multidisciplinary approach at RBH followed, which included three exoskeleton sessions per week. The assisting power from the device was gradually reduced from 100 to 40 per cent, increasing the

muscular input needed to walk.

“He was discharged after six months with his muscle power restored to normal levels.”

In another case, a young spinally injured man used the Indego device to reduce the neuropathic pain and spasms keeping him awake at night. Trials showed that the technology’s ability to completely eradicate his pain, and minimise the spasms, lasted for 12 hours after each session.

“We stress that exoskeletons won't always get muscles working again but do bring many added benefits. They maintain or improve fitness levels, which impacts on the patient’s mood and has other benefits, including improved bladder and bowel functions.

Ultimately, they keep the patient fit in the long-term and give them the best possible chance of recovery.”

The Royal Buckinghamshire Hospital has been specialising in rehabilitation for the past 20 years and remains a destination of choice for patients in the UK and abroad. Our extensive range of services means patients with a wide range of neurological conditions can benefit from our expertise and care. For referrals contact ashley.mancey-johnson@affinitycaregroup.co.uk.

See www.royalbucks.co.uk for more information.

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Exercise regime tackles MS balance problems Mobility problems and fatigue experienced by people with MS could be alleviated through a special programme of exercises, researchers believe.

Balance problems and fatigue are common in MS, leading to falls and limited mobility. MS can also cause vision problems which may

lead to inappropriate movement corrections that can exacerbate balance problems.

A newly published study, authored by Jeffrey R. Hebert of the University of Colorado School of Medicine in Aurora, involved 88 people with MS who were able to walk 100 meters with no more assistance than using a cane or other device on one side.

They completed assessments of their balance, fatigue and dizziness. Half of the group

then completed six weeks of supervised exercises twice a week, as well as being given instructions for exercising every day at home. For the next eight weeks, they had one supervised exercise session each week, plus the daily exercises at home.

All participants were tested after six weeks and again at the end of the programme.

The exercises included balancing on different surfaces and while walking, both with and without head movements and eyes open and closed, as well as eye movement exercises to help improve visual stability, it was reported in the journal Neurology.

After six weeks, the people who had completed the exercise programme had improved in their balance compared to the control group.

On a computer-based balance test where healthy adults with no balance issues reach a score of around 90 or better out of 100, the scores of those who completed the exercise programme went from an average of 63 at the start of the programme to an average of 73 at six weeks, compared to scores of 62 at the start to 66 at the end for the control group. The improvements were still evident at the end of the study.

Researchers said further studies are needed to determine whether improvements can be sustained.

Teenage brain injury guide launched

A new handbook for teenagers living with brain injury has been launched by The Children’s Trust. Me and My Brain gives advice and guidance on topics such as independence, bullying, driving and education.

It also includes real life experiences of young people living with the condition.

Created by The Children’s Trust’s team of medical professionals and teenagers affected by brain injury, Me and My Brain helps to explain the lifelong condition. It provides tips and strategies on some of the challenges such as fatigue and memory loss.

The resource is recommended for family members, teachers and carers, emphasising brain injury as a hidden disability which can be very difficult for those affected to explain.

Maria Coyle, information manager at The Children’s Trust and author of Me and My Brain, said: “This is a resource we identified a need for and decided that we were in a great position to produce ourselves. The teenagers involved in the development of the handbook were paramount in ensuring that the topics covered and the tone we used were relevant and accessible, so we would like to say a big thank you. We have already had lots of interest and are looking forward to sending the handbook out far and wide.”

Me and My Brain is a free resource and can be ordered from www.thechildrenstrust.org.uk/books.

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Spinal injury challenges laid bare

New evidence on brain injuries and criminality

Yet more evidence linking head injuries to criminal behaviour has been published – prompting calls for better screening in prisons.

UK researchers have analysed the growing body of “existing evidence” of head injuries in prison populations and estimate that 10-20 per cent of people in custody have “complicated mild traumatic brain injury (TBI) or moderate to severe head injury”, while another 30-40 per cent could have milder TBI. Their report concludes that, when a person enters the justice system, there is an “opportunity” to screen them for TBI which could help to better support their medical needs.

It also shows that young people with TBI are at a greater risk of early, more violent offending – partly because TBI can compromise the neurological functions for self-regulation and social behaviour, and increases risk of behavioural and psychiatric disorders.

One in four spinal cord injury (SCI) patients in the UK is unable to access the services needed to affect their long-term rehab, the NHS says.

NHS England has published an annual statement on SCI services spread across the eight English SCI centres. It reports that: • The proportion of people admitted with an SCI as a result of an illness or condition compared to an accident is increasing. In 2007/8, 71 per cent of admissions were due to physical injury and this figure has now declined to 44 per cent.

• The average age at which a person sustains their SCI has increased. In 2007/8, it was 44 and the biggest age group was 21-30 year olds.

However, in 2016/17, the average age had risen to 52 and the largest group were 65-69 year olds.

• All the SCI centres reported an increase in complexity of need, which may be linked to an ageing population with greater health issues.

The study also found that young offenders with TBI are particularly at risk of self-harm and suicidal behaviour.

Experts from the universities of Exeter, Manchester, Oxford, Glasgow and Sheffield, and the Centre for Mental Health,say the findings question the assumption that TBI is a “coincidental occurrence in the lives of risk takers”.

“Addressing TBI offers a means to not only improve the lives of those who offend, but also to reduce crime,” said lead author Professor Huw Williams, of the University of Exeter. “A range of measures could reduce the risk of crime following TBI. These could include any form of neurorehabilitation and better links between emergency departments, community mental health services, GPs and school systems; that might lead to early identification and management of TBI in children and young people, particularly in areas of socioeconomic deprivation.

“On a person’s entry into the justice system, there is an opportunity to deliver routine screening for TBI and provision of treatment options.

• Whilst many individuals are well supported by the SCI service, a quarter of SCI patients do not get into the SCI service which affects their long-term rehabilitation and care.

• There are delayed discharges due to failures elsewhere in the healthcare system.

Dan Burden, head of public affairs at the Spinal Injuries Association, said the report “reinforces what our members have been telling us – that access to vital specialist care is quite hit and miss”.

He added: “We are campaigning for the service to work for everyone, especially the large number of people with an SCI who are not getting the specialist help they need for their rehabilitation and ongoing care.

“Specifically we want to ensure access to specialist health services for all SCI people, increase capacity across the system, cut waiting times and improve local health services.”

“Another beneficial step could be brain injury link-workers in prisons to enable screening and support for those with TBI.” The review estimates the lifetime costs of TBI at around £155,000, for a person aged 15 with “mild to moderate” TBI. This combines £95,000 in healthcare costs and £60,000 for the costs of additional offending. The figures are much higher for young people who are already in the criminal justice system, the review says.

People with TBI are incarcerated “at high cost in facilities that might not be well placed to address their needs”, it reports.

The study also highlights where progress is being made, including through UK Parliamentary bodies, in acknowledging the need to take account of TBI in the criminal justice system.

There are initiatives in England that allow neurodisability screening for people entering youth custody, as well as pilot projects to assess for TBI and other neurodisabilities in young adults and adult prisons. The paper was published in The Lancet Psychiatry.

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Calling all collaborators Sharing knowledge and expertise is fundamental to the continual advance of neurological rehabilitation and its power to affect positive change, writes Michelle Kudhail, Director of Clinical Development in Neurorehabilitation Services at Elysium Neurological.

Neurological rehabilitation’s ability to improve an individual’s quality of life depends on a wide range of skills and expertise. Following a catastrophic injury or the onset of neurological disease, professionals from numerous disciplines join forces with the individual and their loved ones on the recovery journey.

However, they must also work together in improving the bigger picture and collaborating with a wide range of organisations and individuals in order to do so. Clinicians working in the field face many common challenges, including finding the best possible interventions for each patient amid a rapidly increasing list of options.

There is also constant pressure to reiterate the compelling case for rehabilitation and evidence the outcomes that can be achieved.

Emerging technologies and treatments must also continually be taken stock of.

Every year we hold an Elysium Sharing Best Practice conference which promotes high standards and innovative pathways within our own organisation. Bringing the diverse range of skilled staff and stakeholders together enables us to showcase innovations in practice and technology within our own healthcare settings, and share that wealth of knowledge across all of our services.

We also offer service users a platform to share their experiences from the receiving end of care. Our annual Service Users’ Conference brings patients and residents together with staff for a day of discussion, sharing successes

and learning from others. Service users are empowered to be part of the event creation team and assist through every part of its organisation. This culminates in an amazing day where staff and service users gain useful, and sometimes inspiring, insights into the challenges faced in the recovery battle and how to overcome them.

In the background are the ever-developing guidelines, policies and legal precedents which impact on the funding and provision of neurorehab. Collaboration between neuro-rehab professionals, educational, legal and charitable organisations is essential in keeping up with these many changeable factors, translating them into improved outcomes for patients and facilitating their journey.

We have certainly seen the benefit of embracing an open, collaborative approach at Elysium Neurological. Our busy programme of stakeholder and continuing professional development (CPD) events, held in partnership with third sector, legal and educational organisations, have proven hugely successful in promoting best practice.

In the many other events we help to organise we always strive to offer expertise from other organisations in addition to our own. Last year, for example, we hosted a Northern Acquired Brain Injury Forum (NABIF) event at which we were joined by the outdoor activities charity the Calvert Trust. Upcoming events this year

will see us sharing a stage with many other organisations, including law firms, NHS decision-makers, neuropsychologists and universities.

Getting involved in wider initiatives, like Encephalitis Day and Huntington’s Disease Awareness Week, is also a fantastic opportunity to tackle important issues and share ideas.

All Elysium Neurological sites are involved in Brain Injury Awareness Week in May, including through ‘Let’s Talk About It’, a seminar for brain injury survivors, families, carers and professionals at our Middlesbrough Neurological centre on 17 May. Such gatherings ensure we never stop learning and play an important role in helping neuro-rehab to progress and gain the greater recognition it deserves.

See pages 64 & 65 for details of upcoming Elysium Neurological events.

For referrals call 07387108625 or email rachaelchamberlain@elysiumhealthcare.co.uk.

For more information visit www.elysiumhealthcare.co.uk.

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Measuring caffeine in the blood after a person has had coffee could help to diagnose Parkinson’s, researchers say.

Scientists at Japan’s Juntendo University believe blood levels of caffeine and its by-products could be biomarkers for the degenerative disorder.

Their findings, published in Neurology, offer hope that a method enabling early identification of the disease could be developed.

Researchers studied how traces of caffeine in the blood, after drinking coffee, can be indicative of Parkinson’s disease. They found that caffeine levels are significantly lower in patients with the disease; caffeine concentrations could therefore be used as an indicator of Parkinson’s, particularly in its early stages.

The researchers studied a group of 139 people, both men and women, with and without Parkinson’s disease.

Each person drank zero to five cups of coffee per day (except for one participant who drank more than six). They then checked the participants’ blood serum for traces of caffeine and its 11 socalled downstream metabolites - small molecules produced during caffeine-induced metabolic processes in the human body.

They found that the serum levels of caffeine and of almost all metabolites, including theophylline, theobromine and paraxanthine - caffeine’s main by-products - were lower in patients with Parkinson’s disease.

There was no significant association between the severity

Caffeine levels could help to diagnose Parkinson’s

of the disease and the concentration of any of the caffeine-related substances.

Also, there was no significant difference in serum levels between male and female patients, although men are known to suffer more often from Parkinson’s disease.

Lead researcher Nobutaka Hattori concluded that caffeine and caffeine metabolite levels in the blood can be “early diagnostic biomarkers for Parkinson’s disease” and “further indicate the neuroprotective effects of caffeine”.

Caffeine levels are significantly lower in people with the disease 16

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Zinbryta review amid inflammation cases The European Medicines Agency (EMA) is currently reviewing a number of cases of serious brain inflammation in people taking the MS medicine Zinbryta.

Biogen and AbbVie, the companies which developed and market the drug, have announced that they are withdrawing Zinbryta worldwide.

The EMA advises that anyone currently taking Zinbryta should not stop without first talking to their neurologist or MS nurse.

Doctors should review anyone currently taking Zinbryta and discuss switching to an alternative treatment as soon as possible, it urges.

No one should begin taking Zinbryta.

Ongoing clinical studies with Zinbryta in the EU will also reortedly now be stopped.

Zinbryta was approved in 2017 for NHS use as a disease modifying drug (DMD) for people with relapsing remitting MS who continued to have relapses despite taking at least two other DMDs.

Campaign to improve use of valuable rehab measure A new campaign aimed at improving access for UK patients to the Rehabilitation Prescription (RP) is being launched by a collective of brain injury organisations.

According to the ABI Alliance, the RP is a valuable tool which documents the rehabilitation needs of the individual; yet it has no value if the individual with an acquired brain injury and their GP do not receive a copy.

If the individual and GP do not know what rehabilitation is required then no access to services can be planned or implemented, the group says.

ensure that, post-discharge, the individual with an ABI and their family/carers have: A The ABI Alliance believes that the RP should copy of the RP, an appointment with their be given to every individual of any age with GP to discuss its contents and a plan for an ABI, on discharge from hospital, with a accessing the rehabilitation services as copy sent to their GP. detailed in the RP. This will then provide a useful resource The ABI Alliance was launched in 2016 with for the GP to work with the individual and the aim of using collective influence and facilitate access to rehabilitation services in collaborating to improve the lives of those the community leading to maximised health affected by ABI. Its RP campaign will be outcomes. The ABI Alliance - a collaborative launched on 1 May at an event in London. See venture between charities, professional abialliance.org for more on the event and the groups and industry coalitions working in the wider campaign.

ABI field – has two campaign objectives.

Visit nrtimes.co.uk for an in-depth report Firstly, it aims to highlight the role of the on the value of the RP in improving RP wherever possible. Secondly, it hopes to neuro-rehab outcomes.

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The multi-disciplinary team integrates with highly trained support staff to empower and promote delivery of person centered rehabilitation programmes of each individual service user. Successful rehabilitation not only improves the quality of life for the service user and their families, but reduces the need for long term provision of funding.

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New Gatwick children’s centre takes flight A new UK facility which aims to give children access to the very latest paralysis treatments has opened in Gatwick.

The paediatric programme at Neurokinex Kids will offer “ground-breaking treatments” to children living with paralysis and is backed by the foundation set up by the late Superman actor Christopher Reeve.

It promises activity-based rehab interventions that can improve muscle function and quality, skin health, bone health, growth and range of motion.

A variety of paediatric equipment has been installed to stimulate exploratory play which, in turn, will build young participants’ strength, range of motion and co-ordination.

Neurokinex is an activity-based neurorehab provider with existing centres in Gatwick, Watford and Bristol. It is known as a community fitness and wellness affiliate of the Christopher & Dana Reeve Foundation’s NeuroRecovery Network (NRN) – the only one outside the US. Two programmes pioneered by the NRN – locomotor training and NMES (neuromuscular electrical stimulation – are not currently available anywhere else in Europe.

Studies in people with paralysis show they can stimulate the entire nervous and musculoskeletal systems through taskspecific exercises.

The centre opens amid growing UK demand

Jasper Thornton-Jones, 5, enjoying the new facilities in Gatwick.

for treatments which help people with paralysis regain lost mobility and improve their quality of life.

Research by the BackUp Trust shows that a person is paralysed every eight hours in Britain. Around 40,000 people in the UK are living with spinal cord injury, with 1,000 new cases per year. One in 400 babies is born with cerebral palsy, and 300 new cases of transverse myelitis strike each year.

Children suffering spinal cord injuries may experience a range of long-term health issues including bone disorders, muscle contractures, significant loss of muscle bulk,

respiratory and circulation problems and bowel and bladder dysfunction. Fortunately, children have greater neuroplasticity than adults, making them even more receptive to activity-based rehab.

Matthew Reeve, Christopher Reeve’s eldest son and vice chairman of international development for the Reeve Foundation, attended the launch of Neurokinex Kids.

He said: “Every NRN participant has experienced significant improvements ranging from enhanced physical health and quality of life to standing and even stepping.

We look forward to hearing more success stories from the Gatwick facility and we’re confident that more and more people living with paralysis will continue to benefit from the NRN’s approach to improved care, recovery, and rehabilitation.”

Neurokinex CEO and founder Harvey Sihota said: “It is an honour and a privilege to be chosen by the NeuroRecovery Network as a Community Fitness and Wellness affiliate to deliver its unique protocols and the results we’ve seen so far in our adult clients have been startling.”

See page 46 for an interview with Matthew Reeve on his family’s bold mission to eradicate paralysis completely.

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Event charts music therapy’s growing influence on brain injury rehab Brain injury professionals were given an insight into the power of music therapy and its growing role in neuro-rehab, at an event recently.

Neurologic Music Therapy (NMT), which is increasing being utilised to treat brain conditions and injuries, was among several key themes at the 2018 Chroma ABI Conference in London.

A growing body of clinical evidence shows that NMT can have a profound influence on the brain – by energising complex cognitive processes to return degrees of function and promote a route to a more independent life.

Research has shown that comprehensive early rehab packages with NMT as a component can record a saving of £1.3m per patient over a lifetime (Wood et al, 1982 / Oddy et al, 2013). A 2017 Cochrane Review, meanwhile, concluded that music interventions may be beneficial for gait, the timing of upper extremity function, communication and quality of life after stroke. Delegates in London heard how music’s ability to connect with the brain and open up pathways to recovery offers huge potential in neuro-rehab.

Daniel Thomas, managing director of Chroma, said: “Music therapy is at a tipping point as proof grows that it is clinically effective, as well as cost effective.

"In today's economic and social climate, where more people need effective rehab due to stroke, Parkinson’s or more traumatic forms of brain injury, using NMT is one of the most efficient ways of treating people.”

Among the headline speakers at the event was Wendy Magee, a professor in the music therapy department of Temple University,

There is strong evidence that music activates many areas across the brain Philadelphia, and a former clinician and researcher at the Royal Hospital for NeuroDisability in London.

She said: “There is strong neurological evidence that music activates many different areas across the brain. The motor system is very sensitive to picking up cues from the auditory system so when we hear music, particularly pulses or rhythms, it kicks straight into the motor system going around the brain.”

Also speaking at the conference was the University of Melbourne’s Dr Jeanette Tamplin, who has spent 20 years working in neuro-rehab and is pioneering the use of virtual reality to improve access to music therapy programmes.

She said: “Even people in the early stages of post traumatic injury or stroke who are really struggling to get any sound out can be helped by music therapy. In the same way that

babies learn to make sounds before words, in music therapy we normalise experimentation with voice and sound through music in the rehabilitation of speech. Rhythmic music also has an amazing effect on movement co-ordination. The hypothesis is that music can bypass damaged areas in the brain, providing a scaffold to do the part of the work the brain is not doing in co-ordinating movement.”

Caroline Klage, partner and head of the child brain injury team at law firm and event sponsor Bolt Burdon Kemp said: “NMT can be beneficial in its own right but it can also encourage other therapies because it is a more palatable method of rehab. We are involved because we see it as an amazing and effective therapy.”

For more info on arts therapies in neuro-rehab settings contact Daniel@wearechroma.com / 0330 440 1838 or visit www.wearechroma.com.

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Rehab professionals are in short supply, amid an ageing patient population

Skills gap must be filled, expert warns

The ongoing advancement of neuro-rehab is being threatened by a global shortage of trained professionals, a leading expert has warned.

The world’s ageing population is leading to rising levels of neuro-disability, causing many countries to increase their investment in rehab facilities and infrastructure.

A worldwide skills shortage in neuro-rehab, however, is exacerbating the challenge of handling this growing healthcare burden.

That is according to Prof. Leonard S.W. Li, president of the World Federation for NeuroRehabilitation and vice-president of the International Society of Physical and Rehabilitation Medicine.

He told an international gathering of brain injury professionals at the 10th World

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Congress for Neurorehabilitation in Mumbai recently that countries across the world are spending more on rehab facilities.

In China, for example, healthcare spending is increasing from five to seven per cent of its budget, with hundreds of rehab hospitals due to be built as average life-expectancy approaches 90 in coming decades. Similar trends are happening elsewhere too, but a lack of personnel is hampering progress – with a shortage of skilled neuro-rehab professionals affecting countries across the economic spectrum.

He said: “There will be a lot of investment by world governments in rehabilitation services. It’s easy to put money into building hospital facilities but building capacity is not so simple. In the next 10 to 20 years there will be bigger and bigger demand for skilled workers in neurorehabilitation.

There is a big role for all of us here to train

In the next 10 to 20 years there will be bigger and bigger demand for skilled workers in neuro-rehab up more workers in the field as the number of patients increases.”

Prof. Li also called for more research which examines the cost-effectiveness of new and emerging treatments and therapies for people with neuro-disability.

Many exciting modalities such as robotics are being underutilised due to cost – or a lack of evidence about their costeffectiveness, he warned.

Read more from the World Congress for NeuroRehabilitation in our Features section.

ADHD and head injuries may be connected Young children who are hospitalised with a head injury could be at a higher than average risk of developing attention deficit hyperactivity disorder (ADHD) at a later stage, if a small study from the US is to be believed.

Researchers examined data on 187 children, including 81 who were hospitalised overnight for a traumatic brain injury (TBI) at some point from age three to seven. The remaining 106 had been hospitalised with other injuries. None of the children had ADHD at the start of the study period. Over the seven years that followed, 48 children, or 26 per cent, developed symptoms of ADHD. Children with TBI are more than three times as likely to develop ADHD as those with other kinds of injuries, the findings suggest.

“Children with a history of traumatic brain injury, even those with less severe injuries, have an increased risk of the development of new-onset attention problems, potentially many years after injury,” lead study author Megan Narad, of Cincinnati Children’s Hospital Medical Center in Ohio, told Reuters. Of the children who developed ADHD, 13 had severe brain injuries, six had moderate ones and 13 had complicated mild brain injuries, with 16 having injuries to other parts of the body.

Brain injuries linked to dementia in later life People who have suffered a traumatic brain injury have a significantly higher risk of dementia, including Alzheimer's disease, than people who have no history of injury, a study suggests.

Researchers analysed 2.8 million patient records and found people with a history of brain injury had a 24 per cent higher risk of dementia than those who did not.

According to the study, a single traumatic brain injury defined as "severe" increased the risk of developing dementia by 35 per cent. A single incident of a "mild" case or concussion increased the risk by 17 per cent. The number of brain injuries greatly increases the chances of developing dementia or Alzheimer's disease.

People who suffered two or more traumatic brain injuries had a 33 per cent increased chance. People who had suffered four or more had a 61 per cent increased chance, and people who suffered five or more had a 183 per cent increased chance.

"What surprised us was that even a single mild TBI was associated with a

significantly higher risk of dementia," lead author Jesse Fann said.

"The relationship between the number of traumatic brain injuries and the risk of dementia was very clear. Similarly, a single severe brain injury seems to have twice the risk associated with dementia as a single mild traumatic brain injury," she added. The age at which a person suffers a traumatic brain injury also affects the likelihood of developing dementia.

If someone suffers a brain injury in their 20s, they are 60 per cent more likely to develop dementia or Alzheimer's disease in their 50s, according to the findings.

The research was carried out by the University of Washington in Seattle and was based on the health data of people who were living in Denmark in 1995 and aged 50 at some point between 1997 and 2013. It found 132,093 people had a TBI at some point between 1977-2013, and 126,734 were diagnosed with a form of dementia between 1999 and 2013.

According to the study even a relatively minor knock on the head resulting in concussion can lead to a 17 per cent risk increase. See below for details of a similar study.

Swedish study offers more evidence of dementia risk Further evidence linking brain injuries to dementia has been uncovered by a Swedish university. Researchers at Umeå University found that traumatic brain injuries (TBI) heighten the risk of dementia for more than 30 years after the trauma – although the risk reduces over time. In the first year after TBI, the risk of dementia increases four to six-fold, the researchers found.

Beyond that, the risk decreased rapidly but was still significant more than 30 years after the TBI. Overall, the risk of dementia diagnosis was increased by around 80 per cent during a mean follow-up period of 15 years. The risk of dementia was higher for those with a severe TBI or multiple TBIs and was similar in men and women. Because the development of dementia can be a risk factor for accidents resulting in TBI, it is likely that in some cases, the onset of dementia preceded the TBI, so the researchers caution against making causal inferences. The researchers tracked all diagnoses of dementia and TBI on Swedish nationwide databases from 1964 to 2012. From all inhabitants living in Sweden above 50 years of age, three cohorts were formed. In the first, 164,334 individuals with TBI were matched with controls; in the second case-control cohort, 136,233 individuals with dementia were matched with controls; and in the third cohort, 46,970 full sibling pairs discordant for TBI were evaluated for dementia during follow-up.

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Fast-growing Exemplar targets quality care shortage

Exemplar Health Care has set out plans to open several new specialist care homes as it continues to fill gaps in vital services for people with complex needs…

The provider will this year launch new specialist care centres in Leigh (Greater Manchester) and Liverpool, with development also underway on sites in Leeds and Preston.

A further 22 areas where demand for services outstrips supply have been identified by the business, which currently runs 25 homes in Yorkshire and the Humber, the North West and the Midlands.

Exemplar provides specialist nurse-led care for adults with complex needs arising from enduring mental ill-health, neuro-disability, profound learning disability, brain injury and stroke.

CEO Euan Craig (pictured), who has been involved in the business for 16 years, says: “Our priority when we launch into new areas is always to ensure that our growth is absolutely sustainable and that quality is never compromised. We work under the strapline ‘every day better’ and are therefore

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constantly pushing to make the lives of our residents better day-by-day.

“Our culture is perfectly aligned to delivering high quality – and focusing on the little things that make a big difference to residents is an important part of that.”

Before opening in a new location, the company works closely with commissioners and other healthcare decision-makers to identify the exact requirements of that area.

These individuals and organisations are then involved throughout the development process, ensuring the plans are fine-tuned to the needs of prospective residents.

“Because Exemplar has such as wide range of care, we can really tailor our offering exactly to the needs of the local healthcare economy,” says Euan. “Fundamentally, everybody benefits from our services. For patients, we are continually striving to give them a better quality of life, pushing their

boundaries through goals and individualised care plans, giving them a greater sense of fulfilment and hopefully discharging them into the community. This obviously benefits commissioners, who also have outcomes they are striving to achieve and we aim to work with them.”

Almost 90 per cent of Exemplar homes are rated ‘Good’ or above by the Care Quality Commission, compared to an industry average of 59 per cent. Most recently, its Dearnevale home in South Yorkshire was rated ‘Outstanding’. The review highlighted the care, compassion and kindness demonstrated throughout the home and the positive and trusting nature of resident/ staff relationships.

Its success is underpinned by high staff retention; a trend mirrored across the group, with many long serving staff in its 2,300-strong team.

Euan says: “Dearnevale has over 350 years of combined service among its staff, many of whom came to us from very different careers, including quite a few from a mining background. We want staff with the right mindset and attitude, as long as they want to give our service users the best possible quality of life we don’t mind what background they come from.

“We have a strong focus on learning and development but the initial message to new recruits is ‘all we want you to do is make this person’s life better’. That means listening and talking to residents and paying attention to the small details that matter to them.

Staff stay with us because they know they will be respected and listened to.

“We aim to make everyone feel valued and maximise their potential, and that goes for staff as well as residents. Our home managers are encouraged to look after their staff as much they look after the residents and the result is a big happy family where

We aim to make everyone feel valued and maximise their potential

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Exemplar Health Care's locations

everyone looks out for each other. This has a hugely positive impact on residents.”

A crucial part of Exemplar’s offering is OneCare – a service which enables people with complex needs to live independently while also having access to specialist care.

Specially adapted houses and flats are located near, or on the site of, Exemplar locations, allowing complex care to be extended from the main home into independent living spaces.

By the end of this year, 18 Exemplar homes will have access to One Care facilities.

“A resident may no longer need the full support of specialised complex care but they are perhaps not ready for living completely independently in the community. It’s a great addition to the care pathway and delivers excellent outcomes.”

In Exemplar’s main specialist care homes, meanwhile, design and layout are intrinsic to supporting service users in reaching their goals.

“Our new homes all have a central area called ‘The Hub’ with a kitchen and quiet room and a large meeting space, with lots of room for community team meetings, social gettogethers and so on. Exemplar homes really don’t feel like nursing homes.”

Providing spacious living quarters for residents is also important. In Liverpool, for example, what was once a 62-bed care home with a previous owner is being redeveloped to have just 32 beds under Exemplar.

This centre is expected to open in December, with more to follow in the longer term.

“Our aim for now is to have no home further than two hours from our head office in South

Yorkshire. Within the next five years we may open secondary offices which allow us to launch in the North East, South West and South East. We are the largest care provider of our kind and the onus is on us to keep filling shortages of quality, specialist care where we see them.”

For more information on Exemplar, and to find out about employment opportunities, visit www.exemplarhc.com.

For referrals call 01709 565 700 or email referrals@exemplarhc.com.

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MPs, charities and embattled parents are leading the charge to legalise medical cannabis. Andrew Mernin joins them on the campaign trail, uncovering the personal, political and financial factors that could revolutionise care of brain and spinal conditions.

W

hen Ava Twomey was diagnosed with a rare form of epilepsy as a baby her parents were told she’d never walk or talk – and might not live beyond the age of three. She would also be in residential care for the rest of her life, experts said.

Now aged seven, Ava not only walks, but can dance, and loves chatting, mostly about Red Riding Hood. “She’s even started getting an attitude,” says her mother Vera, who attributes her daughter’s remarkable progress to cannabis.

Her case has added fresh momentum to the push to legalise medical cannabis - in her native Ireland as well as the UK – for people with debilitating brain conditions.

Ava has Dravet syndrome, a catastrophic, lifelong form of epilepsy that begins in the first year of life with frequent and/ or prolonged seizures. It can be lifethreatening and severely life-limiting - causing numerous challenges including developmental delay, movement, balance and growth issues, chronic infections, body temperature regulation problems and orthopaedic conditions.

Vera, who lives in Cork, Ireland, with her husband Paul and three other children, says: “We were in a very dark place with our daughter and her life was in danger on a daily basis. She could have six or seven seizures together and we didn’t know if she’d wake up.”

In the darkest chapter, Ava suffered a heart attack brought on by the severity of her seizures, and spent eight days in a coma.

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REHAB|’s new wonder drug?

The turning point was the discovery that medical cannabis could do what many other drugs had failed – hold off Ava’s seizures.

“Ava had been experiencing about 20 tonicclonic seizures [causing stiffening, rhythmic shaking and unconsciousness]. She could have a hundred absence seizures on top of that so she was staggering from seizure to seizure, never recovering before the next one came along. We would be in and out

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of hospital and Ava essentially spent every winter there.”

In October 2016 Vera discovered CBD oil, a legal, non-psychoactive compound of cannabis.

“The difference was like being on another planet,” she says.

Over three months, Ava would normally have had around 500 tonic-clonic seizures. In the

Ava Twomey

first three months with CBD, she barely had 20. As time passed, however, seizure levels began to creep back up.

“Dravet is a wicked condition in that it navigates its way around whatever medication is put into the body to bring the seizures back.”

The Twomeys then began reading about epilepsy treatments with THC – the principal psychoactive component of cannabis.

While CBD is legal in the UK, THC is not – as is the case in Ireland, save for one or two hard-fought exceptions. Vera and Paul

campaigned for three years to get THC treatment for Ava, with Vera walking 300km from her home to the Irish parliament to highlight the plight of children like Ava. Eventually the couple took Ava to Holland last summer to access the treatment there and, after showing huge improvement, were granted a special licence by the Irish government in November 2017.

“The government would probably say the decision was because we provided answers in the drugs trial, but in reality it was probably because there was a groundswell of support for Ava. There was a lot of anger in Ireland that a sick child should have to go to another country to get treatment.

“When the THC was introduced, the change in Ava’s cognitive ability was absolutely staggering. Words started to come more often and her balance improved. These things started with CBD but accelerated with the THC. “Since June 2017, the tonic-clonic seizures have entirely gone. That in itself is staggering. In terms of seizures now we just have to worry if her temperature gets high and she might give out a little shout and shake for a few seconds and then she’s back with us. That's about as bad as it gets.”

Ava takes CBD oil alongside the THC product – effectively cancelling out the psychoactive element of THC. “The CBD prepares the body for the THC, which does not result in her being high or stoned. Ava takes her medication and is well, coherent and balanced. There are massive side-effects, but every sideeffect is positive. She has better balance, better sleep, better appetite, clearer eyes, she’s more engaged and the seizure control is extraordinary. She’s also pain free and is going to school more often.

"She is a very happy little person, but she's had a very painful life. Now that things are under control, she plays more with jigsaws and Lego and likes to dance, which she couldn't do before. She loves Little Red Riding Hood, so to hear her say 'what big eyes you have' recently was extraordinary.

“I wish with all my heart that we could have introduced these treatments to Ava

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when she was 18 months old. We could have stopped the seizures, which have done significant damage to her brain. She will improve and she will get better, but if the damage hadn't been done we could have brought so much more out of this child.”

Vera believes the UK, Ireland and indeed any other nation where medicinal cannabis is illegal should look to emulate the Netherlands.

“It was the most amazing experience to see doctors in Holland that actually listen to you. Nobody listened to us in Ireland. My understanding from talking to parents in the UK is that nobody is listening to them either about cannabis. There is such opposition to even talking about it.

“In Holland they were saying ‘you’ve tried 11 different forms of epilepsy medication. It is logical that you would then try CBD and THC for Ava’s seizures. You have tried everything else. It has been proven to work’. I couldn't understand how neurologists in Holland are qualified to the same degree as neurologists in England or Ireland. They are each other's

peers. Yet only in Holland could they see the logic of treating such a catastrophic form of epilepsy with medical cannabis because the risk was so low and the chance of getting positive results would be so significant to the improvement in the child's life.

“I can't understand why neurologists in England and Ireland can't look to Holland and engage with the neurologists there and emulate their empathy and professionalism and experience.

"They have such a wonderful system there that I don't know why doctors in England and Ireland aren't rushing to be engaged with them for the sake of their patients.”

To date only three special licences like Ava’s have been issued in Ireland.

In the UK, the case of Alfie Dingley could open the door to legalisation. Parents of the epileptic six-year-old have issued a petition with 370,000 signatures to Number 10, calling for access to medical cannabis. It remains to be seen whether this is enough to shift a fairly deep-rooted government stance

Cannabis and neuro-rehab: The facts The All-Party Parliamentary Group for Drug Policy Reform (APPG) published an official report into cannabis in 2016 – featuring a number of conclusions relevant to neuro-rehab.

Eighteen months on, its author, consultant neurologist professor Mike Barnes, insists its findings – that cannabis does indeed have medicinal benefits – should be heeded by UK lawmakers.

He says: “It is essential that cannabis is legalised for medical use in order to alleviate suffering of those with pain and spasticity in neurological conditions.

"Legalising it will help many thousands of people in the UK, not just with neurological conditions but for other challenges including mental health and gastrointestinal problems.”

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The finding of the report included:

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There is good evidence to show that cannabis, including the non-psychoactive component CBD, can help to treat chronic pain, spasticity, nausea and vomiting and anxiety.

Cannabis products nabilone, dronabinol, nabiximols and smoked marijuana have all been shown to be efficacious to varying extents in a variety of pain settings in good quality studies.

Moderate evidence shows that it helps to stimulate appetite,

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Six ministers accept that cannabis has been remarkable for this child

which may also be relevant to neuro-rehab units.

There is good evidence for the efficacy of the cannabis extract nabiximols for reducing patient-reported spasticity symptoms, although there is not firm evidence for improvement in objective measures. There is good evidence of safety in the long term and for continued efficacy.

There is moderate evidence for the efficacy of oral cannabis extract for reducing patient-reported spasticity scores.

CBD has been shown to reduce anxiety whereas THC, the psychoactive part of the drug, usually has the converse effect.

Overall, there is good evidence for CBD use in anxiety. This evidence base includes a double-blind, randomised, placebocontrolled clinical study led by Bergamaschi in 2011.It showed that orally-administered CBD was associated with a significant reduction in anxiety, cognitive impairment, and discomfort in patients suffering from generalised social anxiety disorder subjected to a simulated public-speaking test.

There is a theoretical basis to suggest that cannabis could have implications for epilepsy. While animal model and early human studies are promising, however, at the moment robust trials are lacking but further results are awaited.

There is a theoretical basis to suggest cannabinoids could provide neuroprotection in the context of traumatic brain injury, but as yet, evidence is limited and unconvincing.

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against legalisation. Some political figures are hopeful, however.

“I am more optimistic than I ever have been,” says Baroness Meacher (pictured, left), chair of the UK All-Party Parliamentary Group for Drug Policy Reform, which recommends decriminalisation of drugs.

The life peer has been a prominent, crossbench voice of support for medicinal cannabis legalisation. In recent years she has led a House of Lords debate on drugs policy and contributed to influential reports on the issue.

She says: “It’s very interesting that Jeremy Corbyn has consistently made it clear that the Labour Party supports legalisation of cannabis for medicinal use. This is the first time that a major political party has made that position abundantly clear.”

Further optimism comes from the handful of Conservative MPs straying from the party line that the government has “no intention” of legalising cannabis as it considers it as “not having any medicinal benefit”.

“We have six Conservative party ministers, in the home affairs department and the Department of Health, all supporting the need for Alfie Dingley to have cannabis medicine to alleviate his absolutely appalling seizure rate. So six ministers in this government all accept that cannabis has been a remarkable medicine for this particular child.

“Once you have that recognition…and the neuro-paediatrician in the Netherlands believing that, with a tiny bit more THC, Alfie could improve further, then it is actually unsustainable to have cannabis classified within Schedule 1, which defines dangerous drugs with no medicinal value. Even if cannabis only helped one child as a medicine, that would refute its Section 1 position, so it should be moved out of that definition.”

The government was unavailable to comment on the prospect of its stance on cannabis changing in light of the Alfie Dingley case. Officially at the time of writing, Home Office ministers are “exploring every option” for the child, following a meeting with his family. According to reports, a three-month trial led by Alfie’s doctors and based on

sufficient and rigorous evidence” could be in the offing.

Baroness Meacher suggests research is merely being used as an excuse to avoid or delay addressing the growing calls for legalisation.

“Home Office officials are clearly worried about recognition of cannabis as a medicine because they would have to change the schedule. They are demanding that Alfie is granted a licence for research purposes only, but the research population would be one and you would have no control group. It is a complete fig leaf I’m afraid and that is the sticking point – they will only agree to a licence if the child is seen as a research object.

“My impression is that ministers seem very open to getting on with things but they feel hamstrung by their officials.

“The evidence is now so strong and we have opened this up with ministers through the Alfie Dingley case. I think this is now the beginning of a new debate in parliament and we need to pursue it.”

The former social worker sees pressure mounting on the government from all angles, with many sources urging it to soften its stance. Major charities like the Multiple Sclerosis Society are among those lobbying for change, with a survey it conducted suggesting that 72 per cent of people with MS support legalisation for medicinal purposes. Others include spinal injury organisations and support groups for people with anxiety.

Even traditionally Conservative-leaning newspapers are on board, says Meacher, pointing to a recent supportive article in the Daily Mail on a young rheumatoid arthritis sufferer whose life was transformed by cannabis.

“Things are definitely shifting in a way they never have before. We know 74 per cent of the public agree that cannabis should be regulated and legalised for medicinal purposes. So public opinion would be behind the government if they were to change things.”

Stephen Murphy, who consults on Europe’s legal cannabis industry, believes it will be

financial implications – if anything – that change the current government’s approach.

“The UK argument is going to be economic,” says the co-founder of Prohibition Partners, which advises entrepreneurs, businesses, investors and regulators about legal cannabis markets.

“Unfortunately the social and health aspect, that sees hundreds of thousands of patients actually using this in the UK daily, hasn't seemed to have had any influence on the political establishment. The current government hasn’t shown any intent on the back of the social or health perspective so I believe the motivation will come from economics. It is going to come down to financials. How much can this save the NHS and how much can this make the exchequer?”

Britain’s economy already benefits from medicinal cannabis; the UK is the world’s largest producer and exporter of legal cannabis for medical and scientific use, figures from the UN's International Narcotics Control Board show. In 2016 the UK produced 95 tonnes of legal cannabis – 44.9 per cent of the world’s total.

A significant portion goes towards a cannabis-based medicine called Sativex, produced by GW Pharmaceuticals. It is available on prescription for patients such as those suffering the effects of multiple sclerosis, but only on the NHS in Wales.

Murphy says: “One of the biggest cannabis production companies in the world is based here producing one of the leading global cannabis products. It’s ridiculous that we can't treat UK patients with it.

“This industry can give life to towns or cities that have struggled. It is unlike any other because, even though it is an emerging and pioneering industry, we already know what the demand is, we know its usage and the value of it, so there is a lot of guesswork taken out of it.

"The big companies all have evidence of how this could be turned into potential business for the exchequer.”

If money is to be the motivator for legalisation, the UK may look to follow Germany’s lead.

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Stephen Murphy, medicinal cannabis industry consultant

Since medical cannabis was legalised in April 2017, work has been underway to breathe life into a burgeoning industry.

“Germany wants to create its own domestic cannabis industry where production comes from Germany. Currently they import from Canada and the Netherlands but there are a number of producers bidding for licences to produce and supply domestic cannabis within Germany. That would allow them to control and monetise it, and create jobs.

“A lot of governments see medical cannabis as a way of boosting their pharma and agricultural industries. They want to position themselves as leaders in understanding how big and how widely used medical cannabis will be.”

The UK might also learn from teething problems being experienced in Germany as legalisation beds in; although Britain’s already-established production capacity gives it an advantage.

“If you want to import medical cannabis to Germany, you can only get a licence for one batch at a time. There are also limitations with the quantity, volume and variety of what’s being imported.

"Every batch needs to be improved to allow the patient to get a proper understanding of the consistency of the medicine, which may change depending on what's available.”

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There are also inconsistencies in prescriptions.

“The gatekeepers are the doctors but, where one might prescribe medical cannabis, another will not. A huge job needs to be done to educate them on the benefits and to tackle the stigma that they don't actually know anything about it and so are not confident enough to prescribe it.”

Currently medical cannabis is legal in 12 European countries, with each market relying on its own laws in the absence of any Europewide legislation or guidelines.

“How it is implemented in Germany is very different from in Poland, Denmark or Italy for example. Each state is deciding how best it fits their medical system. While Germany is implementing it straightaway into the health system, Denmark is taking a four-year research and development approach to better understand where it can be applied.”

Closer to Westminster, the Channel Islands are in the early stages of legalisation.

Jersey and Guernsey have taken their own stance on cannabis as self-governed isles outside the UK but British Crown dependencies. Unlike the UK government, the Channel Islands are keen to import, grow and distribute medical cannabis.

Supply issues and legislative challenges are currently being grappled with. A January vote in the Welsh Assembly, meanwhile, saw a majority back calls for cannabis for medicinal uses to be legalised.

In Northern Ireland too, progress is afoot.

Billy Caldwell, an 11-year-old from County Tyrone with life-threatening epilepsy, last year became the first person in the UK to be prescribed medicinal cannabis.

Could such developments influence change at Whitehall?

“Places like Jersey, Guernsey, Stormont and the Welsh Assembly can all form together to put greater pressure on centralised government to reform.”

This pressure, and the prospect of a "really exciting and sophisticated cannabis industry in the UK”, gives Murphy optimism that a UK legislative change will happen at some point.

How soon, however, could depend on the continual presentation of irrefutable evidence and the stubbornness of patient families like the Twomeys and Dingleys.

Is there a risk of schizophrenia?

The perceived link between cannabis and schizophrenia is one of the most compelling arguments against the general legalisation of the drug. Some parents who have seen their children descend into psychosis after taking cannabis over a prolonged period understandably oppose legalisation. Others believe regulation would stop young and vulnerable people accessing particularly potent or dangerous products. According to the APPG for Drug Policy Reform’s official report, most literature supports a causal hypothesis between cannabis use and psychosis, particularly if usage starts at an early age and if the individual has a genetic predisposition to psychosis.

But it is unlikely that any one environmental factor (such as cannabis use) or any one gene can cause schizophrenia on its own.

It appears that cannabis is a component cause in the development of symptoms of schizophrenia and the onset of this mental illness depends upon many interacting factors.

However, it is also worth noting that most people who use cannabis do not develop schizophrenia, and most people with schizophrenia have never used cannabis. It is likely that THC is the main cannabinoid which triggers schizophrenia and psychosis.

CBD on the other hand is known to be anti-psychotic and may have a therapeutic role as an anti-psychotic agent although further studies are required, the report says.

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notes from the

BBC reporter and former defence correspondent Caroline Wyatt faced perhaps her most daunting overseas assignment last year – a trip to Mexico for pioneering stem cell treatment for MS. Here she shares the experience, and the impact of having her immune system rebooted, with NR Times.

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T

he world around me began to spin, and the dizziness became unbearable. I collapsed. It was the start of my lengthy journey to a diagnosis of multiple sclerosis, and last year, a stem cell transplant for my MS. My last major relapse in 2016 – with a lesion on the brain stem - left me unable to walk properly, constantly dizzy, with double vision, nerve damage to the eyes, problems with proprioception, and tinnitus.

I could no longer find words quickly, think or speak clearly. Those cognitive problems meant giving up the job I loved as a specialist BBC correspondent.

At 49, I was facing a level of disability that threatened to take away my independence as well as my livelihood.

Then I saw a Panorama programme made by my colleague Fergus Walsh about medical trials using stem cell transplants (HSCT) for MS. The initial trials were aimed at showing that MS patients could safely undergo

chemotherapy followed by a stem cell transplant using the patient’s own cells, the building blocks of the immune system.

It’s known as a non-myeloablative autologous haematopoietic stem cell transplant, HSCT, first performed for MS patients in the 1990s.

I contacted the Royal Hallamshire Hospital in Sheffield, where neurologist Professor Basil Sharrack and haematologist Dr John Snowden were leading the UK arm of the trials.

They were kind enough to perform the tests for inclusion, but I didn’t qualify under the trial’s strict criteria. One of the key tests was an MRI brain scan, which must show active and inflammatory lesions. My initial scan didn’t, suggesting I wouldn’t be a good candidate for a stem cell transplant.

I was aware that there was a small but significant chance of death during HSCT from infection or other complications during or after chemotherapy, though it is now well under one per cent when HSCT is performed at reputable specialist centres. That made my decision to go abroad for treatment a tough one.

Such a risk is deemed acceptable in cancer treatment, but many doctors remain cautious about recommending HSCT for those with a chronic illness such as MS. Nonetheless, NHS England does now perform HSCT for MS in London at hospitals including Kings College, Charing Cross and University College Hospital. It’s offered privately in England too. However, I doubted that I would be accepted for treatment here, as the criteria were the same as the trials.

For me, time was running out: I was on the cusp of secondary progressive MS. By the end of 2016, I felt that the disease was killing me – just more slowly and less visibly than cancer.

So on January 1st 2017, I began treatment at Clinica Ruiz in Puebla in Mexico, a private haematology clinic that has safely treated hundreds of international MS patients with HSCT. Clinica Ruiz offered outpatient treatment, with an apartment for each patient to live in with a carer. That meant that during the neutropenic phase after chemotherapy, when the immune system

was severely compromised, I could control my environment more effectively than in hospital. I also decided to pay for a fully qualified nurse to live with me for the 28 days of treatment.

Medical tests to ensure that everyone in our group of 20 international patients was fit for transplant took up the initial day. First came a spirometry test for lung function, then an electrocardiogram for heart function, as well as a full brain and spinal MRI to ensure there were no signs of any undiagnosed problems.

Then came a wealth of blood tests, and consultations with a neurologist and a cardiologist.

On the second day, we sat in comfy armchairs at the clinic as the cyclophosphamide chemotherapy agent dripped slowly into our veins through a cannula.

I was ill during the four days of chemotherapy, despite the anti-nausea drugs. Each morning, a doctor or nurse would administer an injection of filgrastim, the mobilizing agent that would encourage the stem cells from our bone marrow ahead of the stem cell harvest. Along with breakfast every day came six tablets, from anti-virals to antibiotics and steroids.

Remarkably, despite the nausea during and after those chemotherapy sessions, my brain fog began to lift. I could read and remember again. No longer did I awake to crippling migraines, while the nerve pain in my fingers and toes eased.

Even the heaviness in my legs and arms diminished. My energy levels rose, though steroids and sleep probably helped.

However, something in my brain and body had definitely shifted. I woke up in the morning feeling well-rested for the first time in many years, with no neurological fatigue whatsoever.

I was heavily sedated during the insertion of a central venous line into my chest. For four days, it would help ease the passage of blood from my veins on stem cell harvest day, and during the stem cells’ return a few days later.

On stem cell harvest day itself I woke up feeling nervous. During the four hours of apheresis, the stem cell harvest, the clinic recommended nappies, as continence is a

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problem for many patients with MS. After the harvest came our penultimate chemotherapy session, with patients hooked up to the chemo infusion for around three to four hours.

My stem cell ‘birthday’ dawned bright and sunny on Saturday January 14th 2017. It took just one hour to receive my own stem cells back, which would shorten the time spent in neutropenia and help spark the growth of my new immune system. The cells seeping into my veins felt like a rebirth.

For the next ten days, I was monitored for neutropenia, while the cleaner sanitised the apartment each day, to help me avoid infection.

The final infusion was a dose of Rituximab, a monoclonal antibody that targets a protein called CD20 that is found on the surface of white blood cells called B-lymphocytes or B-cells. It is aimed at depleting any remaining lymphocytes following chemotherapy.

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By the time I arrived home on January 29th, I was almost bald, a small price to pay if it meant I could grow a new, functioning immune system.

However, the recovery period has proved harder than the transplant. Chemotherapy is an aggressive treatment, with many aftereffects, one reason why the NHS discourages patients from seeking such serious medical treatment abroad - not least because it has a duty of care to help if anything goes wrong.

For the first weeks back at home, in quarantine, I slept a lot as I came down from my steroid high. The second week brought some improvements to my balance, while by the third, I was able to walk further and more easily, albeit with a walking stick.

After a few months, I was able to start stretching exercises at home, and noticed that the blurriness in my left eye was receding, although my brain and limbs still felt wobbly.

But the following months proved more challenging.

Sleep was often elusive, as I lay shivering in a cold sweat or wide-awake with hot flushes.

Chemotherapy has a major impact on hormones, and a majority of HSCT patients over the age of 32 will be left infertile - a major consideration for younger patients.

Then the migraines returned, along with painful stiffness, spasms and numbness in my limbs, plus peripheral neuropathy in my hands and feet.

Recovery from a stem cell transplant for MS is a rollercoaster ride, even one year on.

I often feel worse than I did before HSCT and still need to rest frequently during the day. When I work, I have no energy left for anything else. But there are days when I feel a little better, and my hopes soar.

Of the other HSCT patients I know, some have seen major improvements. They are overjoyed that they can again play a full part

insight

in family life, or work without exhaustion.

Many train hard at the gym or at home, trying to regain limb function and balance. Some receive excellent neuro-rehabilition, though many have to pay privately.

Others report little change.

A few say they now feel worse than they did before HSCT, and wish they had never had the treatment.

Much about the long-term impact of HSCT on auto-immune diseases is still unknown, and may remain unclear until the causes of these diseases are better understood.

Soberingly, some HSCT patients at international centres have died over the past year. It is not a treatment to be entered into lightly, however effective it can be in halting progression for some.

Many patients have struggled after transplant with everything from migraines, headaches, swollen feet or agonising neuropathic pain in the hands and feet, to bacterial infections that affect the bladder, as well as common viral infections that resurface in the body when the immune system is fragile, such as the Epstein-Barr virus, herpes and shingles.

My latest MRI brain scan shows that so far, I have no new lesions.

I hope that I shall be among the lucky ones whose MS progression is halted for several years, so I can enjoy life – and spend time with my family and friends, and continue to work and be useful to others.

I can’t, as yet, repair all the damage done to my brain and central nervous system by over two decades of MS. But I am an optimist. I hope that when my immune system reconstitutes itself fully by the end of 2018, it will be able to deal normally with whatever first triggered my MS. In over 25 years with the BBC, Caroline Wyatt has been a foreign, defence and religious affairs correspondent. As well as postings in Germany, Russia and France, she has reported from across Europe, the Middle East, Asia and Africa. In 2016, she stepped down from her role as a correspondent after being diagnosed with multiple sclerosis, but continues to work as a journalist and presenter.

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the atomic age of stroke treatment Microscopic expeditions into the brain are unearthing new possibilities in stroke recovery, as NR Times learns from global authority on molecular rehab, Tom Carmichael.

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M

olecular science has pushed a number of potentially groundbreaking stroke treatments to the brink of patient usage.

They promise to speed up rehab, recover lost motor functions for millions of people around the world and meet surging demand for adequate drug treatments beyond the initial stroke flashpoint.

There is some way to go yet; but one of the world’s leading authorities on molecular medicine and rehab linked to stroke is optimistic.

“Physical medicine approaches to stroke really haven’t changed in decades despite our best efforts,” says Tom Carmichael, professor and chair of neurology and professor of neurobiology at the Geffen School of Medicine at the University of California, Los Angeles.

“This has led my lab and others to focus on molecular medicine and rehab. What are drug therapies that we might develop based on an understanding of signalling pathways or the cellular events in stroke that lead to recovery?”

Carmichael has been hugely influential in the search for new stroke-related molecular treatments in recent years.

Cell therapeutics and specific biomaterials that can be delivered into the stroke cavity to support recovery are among several exciting areas of current and recent research.

Carmichael also points to the potential for new treatments offered through the "clear parallels between motor learning and stroke recovery”.

He says: “There are mechanisms of learning on a molecular level that are also induced in neurons next to stroke. This led us to ask, can treatments that stimulate molecular memory systems also be used to promote recovery in stroke?

“The reason we ask this is because the molecular memory field is way ahead of the stoke recovery field. There are many molecular systems that have been really well recognised to improve memory function. Our initial question was ‘do they have a normal role in stroke recovery and if

so can we stimulate them?’”

Soaring numbers of stroke survivors across the globe have created an urgent demand for drug treatments which aid recovery. In the UK there are more than 100,000 new strokes every year – and 1.2 million stroke survivors. Around a third of stroke survivors globally will move from independent to assisted living, while two thirds will have some form of disability.

Carmichael says: “Although incidents of stroke are actually declining worldwide, populations are increasing. As acute stroke interventions, thrombectomy and our ability to reduce deep vein thrombosis improve, we find that patients are living longer. The cost is also going up as we get better at treating stroke as a cause of death.

The overall cost of stroke is expected to hit around US$240bn a year over time, primarily because it is transitioning into a chronic disease.”

Against such figures, university researchers continue to explore the molecular mechanisms of the brain in search of vital new treatments.

A particularly promising avenue relates to the protein CCR5, the inhibiting of which could be hugely beneficial to stroke patients.

It all started with three boxes and a gathering of 148 of the world’s smartest mice.

Principal investigator Alcino Silva, a renowned professor of neurobiology at the David Geffen School of Medicine at UCLA, set about exploring how the brain links two memories and whether the passage of time affects the strength of the connection.

For 10 minutes at a time, each mouse – with genetically enhanced memory - was placed in three boxes, all unique in terms of fragrance, shape, lighting and flooring.

A week's time separated placement in the first and second boxes. Only five hours separated time spent in the second and third boxes, where the mouse later received a small shock to the foot.

Two days later, the team returned each mouse to all three boxes. As expected, the mice froze with fear when they recognised

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the inside of the third box. Surprisingly, the mice also froze in the second box, where no shock occurred, suggesting they transferred their memory of the shock in the third box to their experience in the second box five hours earlier.

When researchers examined the animals' brains, the neural activity confirmed their hypothesis.

"The same brain cells that recorded the mouse's shock in the third box also encoded its memory of the second box a few hours earlier," Silva said. "We saw 20 percent more overlap in the neural circuits that recorded the animal's experiences in the memories that unfolded closer in time."

Silva continued: "The memories became interrelated in how they were encoded and stored by the brain, such that the recall of one memory triggered the recall of another memory related in time.

"Based on earlier findings, the team knew that a cell is most likely to encode a memory when it is aroused and ready to fire. Neuroscientists refer to this condition as excitability. The excitable brain is already warmed up. It's like stretching your muscles before exercise or revving your car engine before you drive."

Suspecting that ageing weakens a neuron's ability to fully excite, the UCLA researchers conducted a similar experiment in middleaged mice. The older mice did not connect the two memories; each memory was encoded on its own neural circuit.

Ways of boosting the ability of the mice to link memories were later explored. It was discovered that CCR5 – a protein on the surface of white blood cells which serves as a receptor for chemokines (signalling proteins) – had a significant influence. Tests revealed the mice with better memory lacked CCR5 proteins in their neurons. Conversely, animals

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that over-expressed CCR5 protein were slower to learn, revealing the impact of CCR5 on neurons and their ability to code memories.

Such findings have clear implications for stroke – including in relation to an important cellular aspect of learning and memory called long term petentiation (LTP).

This is a long-lasting increase in signal transmission between two neurons based on recent patterns of activity. Decreasing the function of CCR5 was found to increase LTP. Carmichael explains: “If you shock the neuron you see a particular response which is enhanced by LTP; it is patentiated for weeks or months afterwards. LTP is thought to be a core cellular element of memory and is also enhanced in stroke - it seems to be involved in some of the cellular effects of stroke recovery in the tissue adjacent to the infarct.

“LTP in a synapse enhances the connectivity between neurons in amidst a circuit of possible connections and stores that memory. LTP with CCR5 knockout is enhanced causing an upswing in cellular firing, boosted after simulation.

“Another feature that made us very interested in this in stroke is the fact that we might be able to focally manipulate CCR5 in the animal brain after stroke without having to do it to the whole brain. So if we think about some of the failures in the basic science of stroke and translational aspects of basic science labs in general, it’s that they get too specific, too molecular and too unable to dig up something that could be generalised for the human.

“For us to have a threshold to study this in a mouse, we really wanted an understanding of where specific circuits in the brain were involved in CCR5-inspired signalling recovery - and not just knock it out in the whole central nervous system.

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This is an opportunity to repurpose a drug that is already out there, based on solid biology, for an enhanced recovery after stroke

“Knocking out CCR5 in the mouse hippocampus enhances memory, even more than the genetic knock-out. So that was the final element that indicated that we should think about studying this with stroke.”

As Carmichael and fellow researchers sought to build on CCR5 research, they first had to consider whether it was even relevant to the human brain.

“There are large databases of gene expressions of all the cell types in the brain.

There is no CCR5 expression in neurons. I remember discussing this idea in meetings and they’d say ‘Carmichael, there is no CCR5 in neurons so why would you go forward with this?’ We had to understand what was it doing after stroke. Was it specially activated in some way?

“In the normal condition, CCR5 is barely detectable in neurons. It’s mostly in microglia in the brain. The intriguing thing is that stroke massively turns on CCR5 in the neurons adjacent to the infarct and turns it down a little bit in the microglia. Even a month after stroke, CCR5 is still induced in neurons.

“From our own work in mice, we knew that enhanced activity in motor to premotor circuits is causally related to recovery in our models. We really wanted to manipulate CCR5 only in those circuits.”

This latest study involved knocking out CCR5 in 16 per cent of neurons in the motor cortex through the administering of a virus. To measure recovery, parallels had to be found between human and mice tasks.

“We looked at the components of gait and modelled them in a mouse. Just like humans with a disordered gait with errors of placement and heel strike and so on, mice make similar errors that are seen at a general level by falling through a specially designed grid.”

After stroke, a deficit and slow recovery were

recorded in the mice. Once CCR5 was taken out of the equation in only a small set of motor to premotor connections, there was a dramatic improvement in recovery.

The widespread use of CCR5 suppression as a possible tool in stroke recovery is all the more plausible given that CCR5-inhibiting drugs are already patented.

“CCR5 is much better known as a coreceptor for the AIDS virus, so there is a deep pharmacology for CCR5 already out there.

About 15 per cent of AIDS patients are on one such drug called Maraviroc.

“This provides us with an opportunity to repurpose a drug already out there, based on solid biology, for enhanced recovery after stroke.

“Tests at intervals on mice with Miraviroc show that it isn’t quite as effective as CCR5 viral knockdown, but it was fairly substantial in producing recovery after stroke. So a clinically available AIDS drug can, through its CCR5 antagonism, also enhance recovery after stroke.”

A subsequent study in partnership with an Israeli university recently showed similarly positive results with traumatic brain injury in mice.

One theory behind the link between inhibiting CCR5 and recovery is that it could be helping to preserve local circuits next to the stroke which would otherwise be lost over time.

Tissue adjacent to stroke, even if it looks intact, often has some damage undetected by gross level analysis. Studies into the density of dendritic spines - which protrude from a neuron’s dendrite to support connections between neurones in the brain – show evidence of this hidden damage.

“We found that in the motor cortex adjacent to stroke there is a sum total loss of spines.

Even though this tissue looks normal, it is losing some synaptic connections.”

In the mouse with CCR5 knockdown, both through the virus and the drug, there was a significant decrease in lost spines and a significant increase in spines that survived.

An interesting tangent for CCR5 researchers is the existence of humans with a genetic knockout of CCR5. It infers resistance to HIV, is particularly prevalent in Europe and is well represented among Ashkenazi Jewish populations. Research into stroke patients led

by Tel Aviv University has shown a “modest but significantly enhanced” recovery in those with this genetic quirk compared to those without it.

Certainly there is growing evidence to support new stroke treatments based on switching off CCR5 in the brain. Carmichael urges caution, however.

“This is really not ready for prime time just yet. In theory we could give Miraviroc to patients but there are a number of litigations that suggest we need more trials first. We don’t even know the appropriate dosage or timings.”

The UCLA Brain Injury Research Centre is currently on phase two of a human trial of the AIDS drug in relation to brain injury recovery.

“We should wait for the results of such trials before we jump to using this in a clinic,” Carmichael says.

Another possible factor that speeds recovery related to CCR5 knock-out is an increase, after stroke, of axonal sprouting - a process through which new connections in the brain and spinal cord are formed.

This mechanism in itself is of great interest in the search for new stroke treatments.

Carmichael has authored and been involved in several published studies into axonal sprouting in the context of stroke and brain injury in recent years.

One breakthrough, published in 2015, surrounds the discovery of a molecule that

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initiates axonal sprouting.

“We wanted to ask what are the mechanisms that trigger axonal sprouting? Why do neurons that have been in the patient for 50 or 60 years, with a relatively static set of connections, suddenly form a new connection? If we could find that cue, could we then use it as a therapeutic option in humans?”

“The main problem was how to study this.

The peripheral nervous system, and the optical nerve, for example, are clean and reductive [and therefore easier to study].

“In stroke, the injury occurs and then there is a whole network of neurons in the cortex, most of which are just fine. They don’t change and they haven’t been damaged by the stroke.

“The number of neurons that will form a new connection is small and embedded in the circuit of no change; so how do we get to those neurons to see what the molecular growth programme is?”

In a previous study, Carmichael and his team had determined which molecules become more prevalent in the brain during the recovery period after a stroke, and listed all of the genes that are up- or down-regulated.

Researchers believed that one of the molecules on the list could be a signal telling the brain to repair itself after a stroke, and they screened for the molecules that saw the biggest increase in the brain after stroke.

In a five-year study, they eventually identified growth differentiation factor 10,

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or GDF10, a molecule that previously had no known role in the adult brain.

After finding that GDF10 was a possible signal for brain repair, the team analysed the molecule in a petri dish. They found that GDF10 promotes brain cells’ ability to form new connections, and they identified the signalling systems that control the process.

All molecules that are turned on or off by GDF10 in brain cells after a stroke were also identified. The team also made comparisons between the cells’ RNA (polymeric molecules essential in various biological roles) with that in comparable cells during brain development and normal learning. The RNA in the brain cells of people with other diseases was also analysed.

They found that GDF10 regulates a unique collection of molecules that improves recovery after stroke. This discovery indicates that brain tissue regenerating after a stroke is a unique process rather than just a reactivation of the molecules that are active in brain development.

The team also administered GDF10 to animals that had experienced strokes and then mapped the connections in the brain tied to body movement. They compared those to the connections in animals who had experienced a stroke but were not given

GDF10, in animals with healthy brains and with animals that had experienced a stroke and had a reduced level of GDF10.

The study, published in Nature Neuroscience, also showed that GDF10 is released after a stroke in humans and in many different animals.

Carmichael is hopeful that this research, and ongoing exploration of axonal sprouting, could translate from the lab to hospital bedsides – with subsequent research showing tangible improvement in tasks linked to recovery.

“If we block GDF10 we inhibit recovery and turning it on enhances recovery [in mice]. It is induced across species [rodents, monkeys and humans] in the tissue adjacent to the stroke, by the stroke itself. It seems to be a true signal for a growth programme. It did produce a form of tractable pharmacology.

"It suggests that if we can selectively target this, we might be able to promote recovery in stroke.”

Prof Carmichael was speaking at the World Congress for NeuroRehabilitation in Mumbai.

ONLINE|: For full references and links to the research mentioned in this feature visit nrtimes.co.uk

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’m a half widow,” says Mary, whose 69-year-old husband suffered a hypoxic brain injury two years ago. “I no longer work and that’s not a great feeling because you start to disappear.”

Mary is part of a new study which has given a voice to families of people with brain injuries.

Specifically it investigates an element of brain injury care rarely considered by researchers; the impact on families of having professionals in their home.

Like Mary, Anne is also struggling to adjust to the changes caused by a brain injury, in this case to her son.

She says: “You don’t really feel you can argue…You’ve always got somebody there that can hear if I wanna have a wobbly.”

The research paper, How many people in my house?

Family experiences of intensive domiciliary community care following brain injury, is authored by Dr Sonja Soeterik, Erika Turner and Angi Perez-Sanchez. It was supported by UK firms SweetTree Home Care Services and Neurolink Psychology and seeks to expose previously unseen challenges faced by families living alongside rehab professionals. It comes in an era in which ongoing funding

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pressures continue to drive shorter periods of inpatient neuro-rehab in favour of intensive community care at home.

While some patients have a private care regime funded via damages, others have been injured with no case to pursue and return home reliant on statutory provision. Either way, welcoming strangers into the home can be hugely challenging.

“There is very little literature about family experiences,” says Erika Turner, co-author of the study and director of SweetTree's brain injury and neurological conditions service.

“There are findings on loss, grief, adjustment, caregiver burnout and so on, but not on this area.

“When you work in inpatient rehab, the goal of the client is to get home to be with their families. Huge efforts are made to enable this to be met. But the idea of coming home with a support team living in your space is a difficult thing to get your head around.

“Going back home is not going back to normal, it’s a new normal.”

This challenge was summed up by a respondent in the study: "Being in your home with other people, strangers, living with you is a massive thing to overcome.”

The study was carried out through a psychological research method known as Interpretive Phenomenological Analysis (IPA).

This approach aims to understand a participant’s lived experiences and how they attempt to make sense of them – rather than one prescribed by pre-existing theoretical preconceptions. Small numbers of similar or homogenous participants are used to establish depth, not generalised trends.

In this study, a handful of female carers of brain injured sons and husbands offered detailed insight into their daily lives.

Researchers initially sought to detail the underlying family tensions caused by injury even before the issue of strangers in the home had arisen. A common theme was unwelcome role and behavioural changes within relationships.

“It’s always my fault that he can’t do something,” one person explained.

Loss of previously intended plans and socialising opportunities also clouded relationships: “We don’t go out as much as we

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used to,” was a typical concern.

Feeling overwhelmed by the burden created by the injury also stood out. “You’re married and you do it together, but now it seems to be all on me,” a participant said. “I’m now in charge of everything, which is not me,” said another. Uncertainty also loomed large, for example: “I don’t think it will get any easier… when I think about it, it’s been nearly two years and it’s just the same really.”

Add to this emotionally charged period of adjustment, a new challenge: dealing with the strangers that have taken up residence in your home. Members of professional teams often know vast amounts of personal information about the client, but little about the patient's loved ones. They may also have very different beliefs and cultural values to family members.

Typically, much of their work could take place at the epicentre of a busy home.

Turner says: “In an ideal world the family might live upstairs and the person with the brain injury downstairs with their carer.

Everyone has their own bathroom and the carer never needs to go upstairs so there is a very clear physical line to cross into the family spaces.

"Sometimes this is not possible and the person with the brain injury is in a bed in the middle of the living room. The support team and everyone else is there getting on each other’s nerves. So how do you make it work?”

The study set out to analyse how families can balance their sense of intrusion and loss of privacy, with integrating vital support into family life. Turner says: “We chose participants who had significant care needs requiring a minimum of 12 hours per day of support for activities of daily living, personal care and community access. Essentially the families had someone living in their home they would never have necessarily chosen to be friends with. Do they consider them friends? Staff? Family members? What do they include them in and exclude them from?

How do they draw the line? We wanted to understand what we as professionals could do to help these families adjust.”

Part of the inspiration for the study was the challenges Turner’s fellow researcher Dr Sonja Soeterik experienced when her home was taken over by strangers as building work was completed recently.

The consultant clinical psychologist, who

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The turning point was surrendering in their fight for privacy from support workers founded Neurolink Psychology and sits on SweetTree's advisory board, says: “The builders had a key to my house and were coming in in the mornings to start work, when I might have been in and out of the shower.

I couldn’t decide whether I made them cups of coffee and they didn’t know whether they needed to ask if they could use the loo.”

For a family hit by brain injury which has caused long term care needs, such daily awkwardness could play out indefinitely for many years if not addressed. All participants in the study described the challenge of having support in the home. “Sometimes your house can feel taken over,” said one.

The difficulty of keeping usually-private discussions, on topics like money, out of earshot of support workers proved particularly stressful, as highlighted by a respondent: “I will say ‘you can’t do this, this is private’ and my husband just ignores it totally and will blurt out the figure and [when she kicks him under the table to warn him not to speak in front of the support worker], he’ll say ‘don’t kick me’.”

Further embarrassment was documented in situations where the brain injured person breaks the realms of the socially acceptable – perhaps due to behavioural changes caused by the injury.

“What’s affected me most is that he can be terribly, terribly rude to people he doesn’t know,” an interviewee said. According to the research, shame and embarrassment are felt by families due to their inability to project the image of themselves to the wider world they wish to when support workers are present.

Professionals overhearing “negative family communication” or racial comments from the person with the injury, were among the embarrassing situations discussed in the study. The turning point for the women interviewed seems to have been what the report describes as “surrendering” in their fight for privacy from support workers.

Turner explains: “It takes time to develop trust

in the support worker. It is a fight the families had to allow themselves to do.

"Once they actually surrendered, they found it quite enabling, allowing them to do things they hadn't expected. People talked about the person with the brain injury being more communicative and interested in them. We found that having dinner with the support worker creates conversations for them and social interactions which none of the family had previously managed. By having a support worker, things that might otherwise be very difficult to do, like getting the husband out of the house in the evening and going to the movies, are possible. The support workers open the world up for them both, not just the person with the brain injury. Having that extra pair of hands enables them to actually be more relaxed and do more things. It seems that there was a tipping point so that once they gave in, they were able to make their social world richer by having support workers helping them.

“We think of the support workers being there to make the world better for the person with the brain injury, but actually they are also contributing to the family in terms of their own wider community integration and ability to keep some of those things that they as a couple had valued.”

Despite longing for privacy, all respondents described their resignation that it was no longer possible, for example: “I don’t like the fact that I have carers. I have to admit that.

But I also realise that I just would not be able to manage X on my own.”

Another said: “I would think that I would know best for X but I have to be willing to allow the professional to do their job without always interfering.”

In some cases, although trust in the professionals had grown, power struggles remained over how best to treat the client.

“Professional people come along and say ‘this is the right way and this is the wrong way’. In the end, you think ‘wait a minute. I could do a

bit better than that,” said an interviewee.

Generally, however, the challenges and problems of welcoming professionals into the home were matched in the study by ultimately positive experiences; many close bonds were forged between families and professionals, as shown in the following responses: “As far as I’m concerned, they’re part of the family and they’ve [even] been to weddings with us.”

“There has to be a certain distance, but I feel they’re like a daughter…they give and they care, I also care about them. It’s give and take.”

“We’ve got a local music club that we do together and the carer comes. Luckily [support worker X] is coming…she loves music so that’ll be fine.”

Of course, not all support worker/family member relationships are as close, with some responses suggesting that professionals are strictly considered as just that. One respondent described going on holiday while the brain injured person stayed at home with their carer. They locked doors to all rooms in the house not needed by the support worker or injured person.

Given the difficulty of the trust-building process, changes to support team personnel unsurprisingly caused problems. One participant explained the importance of having “a team where I can relax”, adding: “If there are going to be continual changes, that’s the worst thing for me.”

Soeterik hopes this and other concerns raised in the study will help to improve the way family members are supported on the rehab journey. She says: “The whole system is set up with the idea that support workers are there to support the person with the brain injury. Yes, they have to consult with and support families but I don’t think families are thought of in the same way as they are in the paediatric model of rehab, for example.

“Our research points to the idea that we need to look more at the whole picture, particularly in terms of home-based packages.

"So, it’s not just about the person’s goals which are important to their rehab, like being able to walk up the stairs, it’s about how everyone’s life is being affected in the house.”

The research findings will be shared at a

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number of well-attended neuro-rehab events this year. They have also been used to compile a list of tips for families and support workers, which will also be widely distributed. In the longer term, more research into an area largely neglected by studies on the fallout of brain injuries could follow. The research paper concludes that: “Services and professionals should be aware of the impact of support on the wider family system and consider how best to integrate the support.”

Soeterik says: “There is definitely much wider scope for this in terms of other professionals as well as support workers, including solicitors, experts involved in the legal process, case managers and clinicians.

We can do a lot more and I guess this is just the start.”

The names of study participants in this feature have been changed for anonymity.

Legal view: Easing the transition to home care

by Irwin Mitchell's Hilary Wetherell

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Building a happy home

The ingredients of successful home-based support, according those questioned in the ‘family experiences’ study: Reciprocal relationships Respondents described a dynamic and reciprocal relationship with support workers in which they too were deeply invested, not just the person with the brain injury.

Consistency and familiarity These factors were both highlighted as very important to participants – for the wellbeing of the client and their family.

Seeing the full picture Understanding the family and not just the person with the injury was considered necessary. Support workers should know “the little things” about the family, said one respondent.

A good fit with everyone While the nature of the support worker should be a good fit with that of the injured person, family members also stated their relationship with the support worker was important.

Offering security Support was seen as providing a sense of security for families –particularly as a “sounding board” for concerns about how best to support the person with the brain injury. As one interviewee explained: “It’s always worse at night and you think ‘well the carers are coming soon’ and I’ll wait and wait and wait.”

Life is rarely the same again after a brain injury, whether acquired or traumatic. Coming home from hospital or a rehab unit is a key time for everyone but raises yet another round of brand new challenges. So what else can legal and clinical professionals do to provide assistance, support and guidance through the process of adjusting to complex home care provision?

An awareness of statutory rights and obligations is key; anyone living in the community with continuing healthcare needs must be assessed to establish how those needs will be met. Discharge planners/co-ordinators are typically very good sources of advice and assistance on these issues and there is a wealth of information on NHS England's website.

For those who do not agree with the assessment that has been made, advice from a specialist solicitor or local advocacy service should be sought as quickly as possible so that any challenge can be submitted.

For those clients who do not have family support or where there is a significant dispute, early consideration should be given to sourcing an IMCA (Independent Mental Capacity Advocate) or other non-statutory advocacy service. Education and training is also crucial – for the family and, critically, those paid to provide care and support.

Brain injury charities and online resources can

provide invaluable information and support to family members working through this adjustment – which may very easily take years and never be truly complete. Turnover of care and/or support staff can be high because the work can be physically hard as well as emotionally draining; families should be warned to expect this to avoid the feeling that have failed in some way.

The physical environment is often a key issue and can be very difficult to change; if finances permit, adjustments to accommodation or moving to adapted accommodation are both possible. The dynamics described in this research are readily evident whether or not the individual has access to private care and therapy because essentially the research describes human dynamics under extreme pressure. Being able to spot the issues before they become insurmountable and have open discussions whilst maintaining appropriate privacy and dignity are additional key skills which any care team leader, social worker or case manager must prioritise.

Integral to this is careful and thorough supervision of the team. Maintaining exemplary records of care and decision making is also fundamental.

Hilary Wetherell is partner in Irwin Mitchell's serious injury team in Birmingham.

Book early to avoid disappointment.

For information and to book your tickets, please contact us: thechildrenstrust.org.uk/conference conference@thechildrenstrust.org.uk

The Rubik’s Cube of Childhood Brain Injury The Children’s Trust National Paediatric Brain Injury Conference Wednesday 20 June 2018 The Royal Society of Medicine, London The Children’s Trust national paediatric brain injury conference for 2018, The Rubik’s Cube of Childhood Brain Injury, takes a closer look at the puzzling complexities, connections and challenges of acquired brain injury in children.

Listen to and network with expert clinical professionals to explore how best to rehabilitate children and young people with acquired brain injury following illness or injury.

Speakers include: Dr Lucia Braga, International Neuroscientist, The SARAH Network Mr Simon Stapleton, Consultant Neurosurgeon, St George’s Hospital Dr Vijeya Ganesan, Senior Lecturer in Paediatric Neurology, Great Ormond Street Hospital

Book today by calling 01737 365 890 or visit thechildrenstrust.org.uk/conference RCPCH has approved this activity for CPD in accordance with the current RCPCH CPD Guidelines. Registered Charity No. 288018.

TCT_256 March 2018.

Delivered in partnership with

Dr Vijay Palanivel, Consultant in Paediatric Neurodisability, The Children’s Trust Dr Carolyn Dunford, Head of Therapy & Research, The Children’s Trust Dr Jenny Jim, Principal Clinical Psychologist, The Children’s Trust Conference chair and host: Dr Anna Maw, Consultant Paediatric Neurologist, Cambridge University Hospitals NHS Trust

interview

steely resolve The foundation created by the late Superman actor Christopher Reeve has a formidable villain in its sights: paralysis caused by spinal injury. Andrew Mernin meets Christopher’s son Matthew to find out more.

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Paralysis crusader Matthew Reeve

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his December marks 40 years since Christopher Reeve first charmed the world as a shy reporter turned man of steel.

For many, his was the ultimate portrayal of Superman – outshining the many caped pretenders since.

His enduring quality extends far beyond popcorn culture, however.

In the global war against paralysis, his name remains as powerful as the great Metropolis defender himself. Even 14 years after his untimely death, his memory still inspires and motivates people battling back from catastrophic injury.

“I think his story really resonates with people because of the courage and resilience he showed in handling his injury and paralysis,” his son Matthew Reeve tells NR Times.

“He was so closely associated with Superman and then his injury humanised him. Also, his drive was unrivalled and his daily routine was astonishing.

With the amount of care required because of the level of injury, and being on a ventilator 24/7, he was still able to get out there to spread the word, raise awareness and funds and inspire people.

There was a broad public response to that and it was amazing to see.”

His father’s longest running role, as a change agent in the spinal injuries field, lives on through the growth of the foundation he started with his late wife Dana.

Matthew, 38, is in the UK as part of its first foray outside the US. The Christopher and Dane Reeve Foundation’s NeuroRecovery Network (NRN) develops and delivers therapies to promote functional recovery and improve quality of life for people with paralysis.

It combines new technology and scientific research to broaden its understanding of neuroplasticity. Its work is underpinned by Christopher Reeve’s firm belief in the power of activity-based therapy in promoting functional recovery after spinal cord injury.

There are 11 NRN facilities in the US and, in 2016, it signed its first overseas agreeement, with UK activity-based neuro-rehab provider NeuroKinex.

The British organisation, which has centres in Gatwick, Watford and Bristol, was able to begin offering the NRN protocols of locomotor training and neuromuscular electrical stimulation as an affiliate of the foundation (see p18 for more).

The next step is a new Neurokinex Kids facility for

children living with paralysis, which opened in April this year in Gatwick.

The NRN describes its UK activities as the “first endeavour to establish a global network of rehab facilities united under a common protocol”.

And Matthew is hopeful of further expansion of his dad’s legacy in the coming years.

“The goal of our network is to share best practice, to create valuable data and to adjust our protocols and procedures accordingly over time. If we don’t have standardised practices, then we can’t correlate what’s working and what’s not.”

But the Reeve Foundation is working on a much greater goal too. After his injury, Reeve senior had a vision for “a world of empty wheelchairs”.

He and his family got to work in supercharging the search for a paralysis cure.

Matthew says: “A world of empty wheelchairs is of course an ambitious vision, but nothing of any consequence is ever accomplished without bold vision. Our main goal is to put ourselves

Nothing of any consequence is ever accomplished without bold vision out of business.”

A mass liberation of paralysed people from their wheelchairs may seem a distant goal.

Rapid progress on several scientific fronts, however, suggests it will come to pass eventually; it may not be as Superman envisaged though.

“My dad used to talk about a singular cure that applies to everyone but we’ve known for a long time that this probably won’t be the case.

“Every injury and every injured person is different.

It’s really exciting in this field to see the changes happening to patients and the improved quality of life that some of these interventions can bring.”

Matthew’s optimism comes from various sources.

“Some of the most encouraging areas of research are at the intersection between technology and biology where there are lots of early stage and advanced approaches.”

Among them is epidural stimulation (ES) – a technology pioneered through the Reeve

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Christopher Reeve at the Golden Globe Awards in 1999.

Foundation’s The Big Idea initiative.

ES involves continuous electrical current being applied at varying frequencies and intensities to specific locations on the lower part of the spinal cord.

A device is implanted over the dura (the protective coating) of the lumbar cord where the central pattern generator (CPG) exists.

The CPG acts like a mini-brain within the

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spinal cord and is able to interpret sensory information. ES activates the nerve circuits in the spinal cord to provide signals that would normally come from the brain.

Put simply, commands given using a smartphone-sized remote control – like "move my right leg" – have been shown to result in movement.

In 2014, the Reeve Foundation unveiled a

study in which four young men living with spinal cord injury recovered voluntary movements and the ability to stand. Each participant had a chronic motor complete injury, meaning they were completely paralysed below the injury level and were unlikely to recover. Efforts are now underway to take the findings closer towards a widely-available treatment.

A trial of 36 people began earlier this year which could help prove to the US Food and Drug Administration that ES is both safe and effective.

“Without scientifically sound research, there’ll be no stamp of approval, no insurance coverage, no Medicaid coverage and no devices,” says the foundation. Beyond that, ES could have global appeal, with The Big Idea aiming to make the therapy available to men and women living with paralysis worldwide.

Matthew says: “It’s an area we are really committed to because of the astounding results it can achieve. Other hot areas of research include cell transplant and cellular circuitry.”

Also being continually developed with the help of the foundation is locomotor training.

This is offered across the NRN centres, including those now in the UK, to retrain people to stand and walk. It involves step training, over-ground walking and “community ambulation” training. While the technology is increasingly well established, it too is being pushed forward by the Reeve Foundation.

“Everything can be improved; if not at an advanced level then in terms of being standardised across the NRN. This is the point of trying to amass as big a data set as possible.

By standardising these protocols and having an umbrella under which all of this research is carried out, we can make sure it gets better and better over time.”

Standardisation of treatments for paralysis is hugely important to the foundation.

Participants in the NRN become part of a database that documents comprehensive medical information about the progress of each patient.

This enables the NRN to accurately measure outcomes and track the tangible impact of different therapies. Findings from the

interview

The Reeve Foundation has many supporters in America, including music and movie stars.

Here siblings Alexandra, Will and Matthew are pictured in 2009 with Meryl Streep and singer/songwriter Colbie Caillat (far right) at a foundation fundraiser.

My father used to get so frustrated about researchers working on similar things but not sharing information with each other database are shared through peer reviewed publications in scientific journals.

A willingness to collaborate is fundamental in the hunt for a paralysis cure, Matthew believes.

“My father was emphatic about this. He used to get so frustrated when he talked to researchers in different sciences and found that people were working on similar things and not really sharing their information.

Resources are so limited in this field and people need help now. There’s a ticking clock and so we need to make sure resources are used as efficiently as possible and that time isn’t wasted.”

An international research consortium championed by the foundation has helped to close these gaps between labs pursuing various avenues of potential paralysis treatments. Wider changes have also made a difference.

“We’ve come a long way. The world is much more connected now and I think there is a collaborative approach to the field now. When my father was alive he couldn’t have foreseen the importance technology would come to play in spinal cord injury research – and in activity-based therapy in terms of helping

people recover motor function and secondary functions such as bladder and bowel control and sexual function. To embrace technology there has to be collaboration and it feels that things are much more open than when my father was alive.”

The panacea in tackling the world’s paralysis problem must surely be a treatment that delivers proven results cost-effectively.

Matthew agrees that finances are an important consideration.

“The science is ahead of the money and always has been. The more we collaborate and share resources, the faster progress will happen. Even in the developed world the cost of treatment can be [prohibitive]. There is also a question of scale in replicating and maintaining the high level of quality and making sure protocols are adhered to. There are different regional and national systems, whether they are private or public, subsidised or not. Our goal is to prove these treatments are beneficial beyond question.”

This means ensuring that “people don’t have to fight for access to activity-based recovery and that local and national government bodies come to understand that the longterm benefits outweigh the cons and that

there will be savings in the future”.

While it is backed by significant clinical expertise and leadership personnel, the Reeve Foundation is very much a family affair.

Matthew’s official title is VC for international development, although his role is juggled with his day job in the TV and film industry as a producer/director and screenwriter. His brother William and sister Alexandra are also actively involved in the foundation’s work and fundraising efforts.

The experiences of Matthew and his relatives as family members of a spinal cord injury case have shaped the work of the foundation.

Christopher Reeve shattered his first and second vertebrae when his horse pulled up at a fence jump in 1995, throwing him headfirst to the ground. He was paralysed from the neck down. Matthew was 15 at the time.

In the aftermath of the accident, Matthew's stepmother, the late American actress and singer Dana Reeve, searched in vain for a course of action.

“She found there was nowhere to get information. These were the pre-internet days and there was no centralised database of cases. As a result of her frustration, under her vision, guidance and leadership, she created the Paralysis Resource Center; a toll-free, manned phone number which families of newly injured patients can call to talk to someone. It gives them a helping hand through a very difficult time.

“We try to provide services which, through our family situation, we found lacking.”

Online add-ons like maps to local services have since been incorporated to what is now a growing resource of information.

The foundation’s Quality of Life Grants Program, meanwhile, has awarded more than US$23m in financial support to fellow nonprofits aligned with its mission.

“My father was always mindful that our family was abnormal compared to most families going through this. He was a celebrity and we certainly had more resources than most.

He had a very good insurance policy and an excellent rehabilitation centre nearby. He was always very conscious that not everyone was as lucky as he was and we definitely keep that in mind as we try to create services to help people with paralysis.”

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time to rebalance the scales?

New research suggests an upgrade of neurobehavioural ratings systems is long overdue, writes Professor Nick Alderman.

The ability to produce an accurate assessment of the level of someone’s neurobehavioural disability (NBD) is critical in determining the appropriate treatment pathway.

It sets expectations and goals for the individual in question and allows care providers (along with their funders) to put the appropriate resources in place for treatment and support.

It means families can be informed and better understand the nature of NBD and the challenges this creates and it allows us as professionals to validate the benefits of neurobehavioral rehabilitation (NbR) methods.

However, whilst all tools rely on evaluating symptoms of NBD using rating scales, all of these are compromised to an extent by the context in which assessments are made.

This important issue is explored in a recent journal paper, which describes research conducted by myself and longstanding colleagues from Swansea University, Professor Rodger Wood and Dr Claire Williams. In it we argue that the time has come for a rethink and explain why current indices may be giving us a misleading picture of someone’s true independence levels.

That is why we suggest the time is right to recalibrate ratings of neurobehavioural disability from the SASNOS scale.

What is the principle reason for this?

Crucially we may have overlooked the impact that the context in which current ratings are decided upon has on those scores. By that I mean the care environment that a person is living in and experiencing, when

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they are assessed.

Imagine for a moment that a person with an acquired brain injury is making excellent progress in their rehab journey. Repeat assessment on outcome measures suggests greater independence and autonomy, including a reduction in symptoms of NBD on the SASNOS. Good news.

There then comes a moment when a decision is taken, partially based on these assessments, that the person is now ready to move on from rehabilitation in an NbR hospital and would be better suited to living in a supported living environment in the community. A fine ambition.

However, within weeks of moving into the community the individual starts to regress.

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The rating made in the hospital rehab setting was perfectly valid, but only meaningful for that context

Ratings of NBD symptoms on the SASNOS noted to have reduced in the hospital setting are on the increase, including verbal and physical aggression. As their behaviour in the community deteriorates there is contact with the police and the criminal justice system and eventually short term custodial sentences are imposed.

A huge cost to the individual, society and the tax payer.

What has gone wrong here? Well, I would argue that the NBD rating made in the hospital rehab setting was perfectly valid, but only meaningful for that context.

In hospital, the highly structured and therapeutic environment provides a prosthetic that undermines

the factors driving NBD, whatever these are, such as cognitive impairment. When these drivers are dynamic they are amenable to change which is independent of the environment the individual is in. But when they are static and fixed, reduction in NBD is achieved through the environment and the support given within it.

Bluntly, take away the support and we see the true extent of that person’s disability.

What is ideally required is a method that assists interpretation of results from an instrument that provides measures of the rich variety of symptoms of NBD, rather than a single aspect, that can be applied at any stage in rehabilitation.

We argue that we need to weight the SASNOS scores to take into account the impact that the environment has on the individual.

To achieve this we recommend that the SASNOS scores are recalibrated to reflect the degree of help or support rehabilitation participants receive for the management of each of the 49 NBD symptoms using a supplementary scoring system. This means adding an additional dependency rating to each item: 1 – ‘no help or support’, 2 – ‘receives help or support’, 3 – ‘receives a structured programme/intervention'.

All our findings show us that adjusting standard scores to reflect dependence on the environment is beneficial.

It reduces risk of underestimating the extent of NBD in other settings; facilitates understanding of whether reduction in NBD symptoms is attributable to modification of dynamic vs. static factors; provides further evidence of the benefits of NbR; and makes a valuable contribution to rehabilitation, especially goal planning, evaluation and assessment of future needs.

I would urge NbR practitioners to adopt these new ratings so we can all deliver the highest quality and most effective support for the people in our care - especially as a means of determining rehabilitation outcomes.

Knowledge is power and we would argue that by using this supplementary scoring system, SASNOS assessments further increase the information needed to do the very best we can for people with acquired brain injury.

Prof Alderman is clinical director of neurobehavioural rehabilitation services with Elysium Healthcare. He is also an honorary professor at Swansea University and visiting professor at the University of the West of England. He chairs INPA’s research & outcomes group, and the East Midlands Acquired Brain Injury Forum.

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Ruth Abuzaid, head of service development at the Huntington's Disease Association.

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condition update:

huntington’s Twenty-five years on from the discovery of the gene behind Huntington’s, those treating the disease are more optimistic than ever about the search for a cure. NR Times asks expert Ruth Abuzaid about the challenges and changing outlook facing patients with condition.

UCL neuroscientist John Hardy hailed “the biggest breakthrough in neurodegenerative disease in the past 50 years” in December.

Researchers had successfully used an experimental drug, injected into spinal fluid, to safely lower levels of toxic proteins in the nervous system caused by the disease.

In Huntington’s terms, it was the biggest story since the 1993 discovery of the gene which triggers the disease. The mutant 'Huntingtin' disease gene which causes Huntington's contains instructions for cells to make a toxic protein. This code is copied by a messenger molecule and dispatched to the cell's protein-making machinery. Researchers last year found that a drug called Ionis-HTTRx intercepts the messenger molecule and destroys it, effectively silencing the effects of the mutant gene. While the breakthrough has clearly energised people on the front line of Huntington’s care, its translation into a widely-available treatment could take years.

In the meantime, work continues to increase awareness of the disease and improve its management and diagnosis.

Here Ruth Abuzaid, head of service development at the Huntington’s Disease Association, provides an update on the condition.

NRT: Was last year’s discovery really the game-changer it was billed as?

RA: Since the gene for Huntington's disease was discovered in 1993 there have been many trials looking at what we can do to slow down the progression of this disease. Until now, however, nothing has been found that can do that.

The big breakthrough last year was a pharmaceutical trial of a Huntingtin-lowering drug. It has now been trialled in people in the early stages of the disease and it has been shown to be safe and to lower the levels of the mutant huntingtin that leads to Huntington’s.

So yes, it is really exciting news for our community because it is the first step on the pathway to something that could slow down the disease.

How long until we have a treatment on the market and accessible to all?

Things are certainly moving in the right direction. The pharmaceutical firm Roche has licensed the drug and will be responsible for its ongoing development. Obviously for a company to invest in something like this is really exciting. We know the drug lowers the amount of mutant Huntington which causes the symptoms. What we don't yet know is

what effect it will actually have on the symptoms themselves.

It could be another seven or eight years until we can truly conclude whether this has been a therapeutic success.

How many people are affected by Huntington’s currently?

It's really difficult to get accurate numbers because people may live with the disease for a long time without presenting to a medical professional. Partly that is because quite a lot of people are in denial of the disease. In fact, the changes that Huntington's influences on the brain can actually lead this denial.

We estimate that around 12.3 per 100,000 people in the UK have Huntington’s which amounts to around 8,000 people. Recently we’ve seen an increase in people being diagnosed with the condition.

Firstly, this is because people are living longer - so we are picking up people now who don't start to show symptoms until their eighties, for example.

Usually the disease starts between the ages of 30 and 50, but sometimes its younger and sometimes older.

Secondly, we’re getting better at diagnosis.

In the past there was quite a lot of misdiagnosis.

Do we know why the disease is passed on through generations?

It’s through what we call a genetic stutter.

The ‘CAG’ part of the standard genetic code is repeated.

If the number of repeats reaches a certain level, the disease is extended to that person.

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condition

But there are also new mutations of the disease?

When mutations seemingly come out of the blue it is normally because people don't know their family history. Perhaps someone was adopted or their father isn’t who they thought they were. Also, their parents might have been wrongly diagnosed with Parkinson’s or died before the disease symptoms arose. It could also be that the parent had a fairly long CAG repeat that hadn’t quite reached the Huntington’s threshold. A slight increase in the next generation could put that person at risk of the disease.

Until the recent promising research turns into treatments, what is the outlook for people with Huntington’s?

Life expectancy once people start showing symptoms is quoted as 15 to 20 years, but it is a very slowly progressive disease. There is medication which can help to manage the symptoms, and make a big difference to quality-of-life. If patients are able to tap into the correct teams and the right resources and have a good care package around them – that can make a huge difference. So too does having carers who are educated in the disease and understand how to adapt to the patient’s behaviour to make their life easier.

How does the disease affect people’s quality of life?

Everyone with Huntington's is likely to see some change to their physical ability, emotional wellbeing and behaviour. The classic symptom of Huntington's is large involuntary movements, but some patients might actually have very little movement.

For most people, their pathway through the disease will be one where they ultimately can't walk, talk or swallow, and they need fulltime nursing care. On the behavioural and emotional side, it can vary greatly but there are some common themes such as cognitive ability slowing down and finding it harder to make decisions. Others will have extreme mental health issues.

Beyond the UCL trial, are there any other emerging drug treatments?

Currently Tetrabenazine is the only

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medication approved in the UK for Huntington's disease specifically.

Other than that there are the common treatments for associated problems such as depression and anxiety.

Are more people becoming aware of the symptoms or risk factors of the disease?

We are seeing a generation coming through which behaves in a different way, interacting with the world through social media and keen to get rid of the stigma of the disease.

There is a stigma to Huntington's because it has behavioural and mental health aspects and there might be psychiatric implications.

So, in the past, people have hidden away.

Younger generations are saying "hang on, we want to make a difference and be open about Huntington’s".

Because of this, more people are going to medical professionals earlier.

Has the recent research breakthrough also helped to spread awareness of the disease?

Because there is now a potential diseasemodifying treatment, we have seen a sudden increase in people contacting us and going to genetic counsellors.

If your parents have the disease, then you have about a 50-50 chance of getting it and you can take a predictive test at age 18 and above. To date, many people have lived with the Huntington’s risk without getting tested.

For many people, there was a sense of "what difference would that make in my life? There is nothing to stop me getting this, so it's best if I don't know". But now we are seeing a surge of people saying "if this disease modifying therapy is coming on the market, I want to be ready and waiting for the next stage of trials".

Some clinics are putting on extra sessions at the moment and those people that were always in the "at risk" category are coming out of the shadows.

condition

What about children whose parents carry the gene?

A parent can't get the child tested for Huntington’s because it's an adult onset disease and it’s the individual’s choice to know whether or not they have it. When they reach 18 they can then make the decision to take the test. It’s a fairly lengthy process, usually involving at least three sessions of genetic counselling, before they take the gene test.

Normally that test would give you a direct answer of "yes you're going to get it in the future" or "no you are not". It can't tell you when you are likely to get the disease. A lot of people tend to take the test when they come to think about having children.

Finding out you will develop Huntington’s must be devastating. How do people cope?

It is incredibly difficult to deal with. For a number of years now we’ve been running a young adult conference for people aged 18 to 35 which talks about things like testing, having children and coping mechanisms. One of the hardest things for people with the disease is the fact that it’s so rare. In the past, people would probably go through their lives and never meet anyone outside their family that had the condition.

A massive part of our work as a charity is trying to bring people together. Now through social media and the internet, this is a lot easier. Huntington’s is also a difficult disease to describe because it can present itself in many different ways. Most people with Huntington's are likely to be the only person on their GP’s caseload with the disease.

Every time they see a professional, like a therapist, physio or OT, they are unlikely to have dealt with other people with the disease.

The individual must start afresh each time, explaining their situation.

What are the financial implications of Huntington’s diagnosis?

Since Huntington's goes from generation to generation in the same family, a lot of our families unfortunately live with a certain level of poverty or at least struggle to make ends meet. People might have given up work to take on carers responsibilities generation after generation. Unlike a brain

injury patient, for example, whose care might be supported by compensation funds, Huntington’s patients tend to rely heavily on NHS and social care.

Given current challenges in the NHS, are Huntington’s patients getting access to the care they need?

The most challenging area in terms of support for people with the disease is mental health.

Some people with Huntington’s have very severe mental health needs and it's really difficult to get them into services. Quite often they'll be bounced around between physical disability-related and mental health services.

One of our key roles as a charity is empowering health and social care professionals to play their part in supporting people with the disease.

Counselling can be really, really beneficial but is something that is lacking as a whole,

across the country. As a charity, we seem to be picking up a lot of the pieces because statutory services are dropping away.

Is there a growing number of specialist centres for Huntington’s patients?

Specialist clinics tend to crop up where there has been special interest from a neurologist or clinical team. They work fairly individually but provide an essential service to people with Huntington's. The growth of this network of clinics has been aided by a greater push for research in recent years.

This is largely through the Enrol-HD, a global observational study for Huntington’s families which links into specialist clinics. We try to encourage people to sign up because they are then tracked along the way.

Access to specialist clinics is limited in some parts of the country and more coverage is needed.

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interview

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resistance!

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W

hen the cuts come calling, staff and patients are usually powerless against them.

Halting their advance is seemingly impossible. But in the face of closures or “repositioning” of services, resistance is not always futile.

As brain injury survivor Heather Peacock proved last year, cutback decisions or “proposals” can be fought and, occasionally, reversed.

“My case manager was in tears when they told me the news. I thought I have to do something about it,” says Heather, now aged 25.

What followed is a fine example, to patients and professionals, of the tactics needed to stand up to health authority decisions.

Heather was months away from graduating from university when she lost control of her car en-route home for the Easter holidays in April 2015. She remembers the morning of the crash but little else.

She’d been flung through her windscreen as her car smashed into an oncoming vehicle. An air ambulance rushed her to intensive care at Nottingham’s Queen's Medical Centre and Heather was left with a severe traumatic brain injury. She was later transferred to the hospital's major trauma unit and, eventually, Linden Lodge neuro-rehab unit at the nearby City Hospital. In the aftermath of the crash she spent eight weeks in a coma. She had lost mobility in her left arm and leg

vive la

The rebel’s guide to fighting NHS cutbacks.

interview

and on the left-hand side of her face.

“I stayed at Linden Lodge for about five months, as I learned to walk and talk again. It’s a small place, tucked away on the hospital campus, but it's really good and has helped so many people.

“After that I came back as an outpatient.

Linden Lodge had sent their re-ablement team with me when I went home in the October. They were with me for four weeks, helping me to move home and teaching me how to walk upstairs to my room, which is all I wanted to do.

“I had been going to outpatients for about a year when my occupational therapist and case manager took me into an office and told me everything that was happening.”

It was just before Christmas 2016 when the Nottingham North and East Clinical Commissioning Group announced plans to potentially cease funding of the service from July 2017. This was part of a review of brain injury and neuro-assessment services at Nottingham University Hospitals (NUH).

The CCG had identified seven services which they proposed could be delivered closer to patients’ homes, rather than at hospital. Heather was sceptical about the timing and keen to challenge the proposals.

“I think they were trying to push it out over Christmas to make sure nobody really heard about it and it stayed under the radar."

NR Times has no reason to suggest this was the case, but the timing was certainly unfortunate for all concerned.

“I initially heard about the traumatic brain injury service being cut and then a week later I was told about the entire outpatients section going.

“They were proposing to cut off outpatient treatment after 16 weeks. I had been going there for about a year and was only just improving. If I had stopped at 16 weeks, my left arm would rigidly be stuck. I wouldn’t be able

to walk or talk very well either.”

Shifting services from the hospital campus to the community also had negative implications, Heather believed.

“For a lot of outpatients, going to appointments was probably the only time they came into contact with other people with brain injuries – or people in general as a lot of them lived on their own. I think they would be quite isolated without the service.”

Heather decided to intervene as best she could. “I knew staff couldn’t really get involved but what about a patient who is living proof that what they were proposing was nonsense?”

Her first move was a Facebook post designed to serve as clickbait – attracting as many views as possible and enticing readers to take action.

“I showed pictures in stages from me being in a coma, then at 16 weeks and then where I was at the time.” She wrote that newly brain injured patients would not be able to take advantage of the rehabilitation services at Linden Lodge and would have to be moved to units in Birmingham, Stoke, Coventry or Sheffield. Families would have to travel further and it would mean potentially fewer visits from family, which are so important to rehabilitation.

“Limiting rehabilitation treatment as an outpatient to 16 weeks would mean traumatic brain injury patients having to struggle and not receiving the excellent care that I have,” she said. “The longevity of the treatment cannot be underestimated as improvements to my recovery are still occurring a year and a half after my accident. Even in the last couple of weeks there has been a significant improvement to my walking and function in my left arm,” she added. Also, she explained that limiting outpatient treatment would prevent patients becoming independent and improving their mobility. This would impact on the long-term support they will require from government via the PIP system. This would cost more in support than it would have done by providing the primary care that is needed and enable patients to return to work, she wrote.

Her post quickly hit the 1,000-shares mark.

A petition followed, as did several media

appearances – first on BBC radio and then on regional TV news programmes. She also wrote a blog for ITV News Central.

“My dad emailed local stations and luckily they responded. I sort of became the figurehead of the campaign, although I didn’t want to be!

“I do think the TV interviews embarrassed [the CCG]. I just wanted to get as many people as possible involved. We also gatecrashed a CCG meeting. About 20 brain injury patients turned up and basically yelled at the CCG. I think they were a bit bemused and possibly scared that so many people had turned up.

“From then on they said they would set up focus groups and I think we forced them to do everything properly and by the book. It forced them to do things the right way because it had felt like they just sneaked the announcement out and there would be no-one protesting it.

“We got the good news in February 2017 and I couldn’t believe it. I never expected to have any sort of impact really. I had heard all these stories about services being cut and closed down in the NHS and thought it was hopeless.

But I was so happy and managed to access the outpatient service until last September.”

Following the review of services, it was officially announced that brain injury services and neuro-assessment would still be administered by NUH. Dr James Hopkinson, clinical lead at the CCG, said at the time: “Patient, public and clinician feedback was always going to be integral to our commissioning decisions and we’re pleased we received such a huge response from patient and professionals via patient groups, our website and patient experience team. As a CCG, listening to our communities and our patients is critical. We have been happy to do that, and have made adjustments to our plans based on feedback, along with the feedback from a wide range of clinicians."

Three years on from her accident, Heather is now back on track with her studies, nearing completion of her psychology degree.

Her story is a reminder that cutbacks aren’t always foregone conclusions; and that some CCGs do listen during consultation periods – and may even take action with enough dissenting voices.

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report

the shifting plates of disaster zone Treatment of spinal injuries rehab after earthquakes and other disasters is improving but much more work is needed – especially in poorer parts of the world.

Tom Alexander reports.

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report

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ehab units on wheels could revolutionise the way spinal injuries acquired in natural disasters are handled, savings thousands of lives each year, clinicians have been told.

They might also be the catalyst to creating vital neuro-rehab care networks needed in many parts of the developing world, a leading expert believes.

Over 6,000 natural disasters between 2000 and 2017 killed two million people and injured a further three to five million.

Around 90 per cent of natural disaster deaths and 98 per cent of injuries affect people in developing countries.

Severe spinal injuries are a major cause of death at the time of the disaster – and also in the days and weeks that follow; often due to a total lack of rehab infrastructure within reach of the disaster zone.

In the Haiti 2010 earthquake, for example, more than 220,000 people were killed and 300,000 were injured.

A report published six months afterwards suggests there were only 150 people remaining in Haiti with earthquake-related spinal cord injuries – still an unprecedented amount in a nation not set up to offer adequate spinal injury care.

As one research paper on Haiti (Burns, O’Connell, Landry 2010) noted: “Some facilities decided not to treat catastrophic injuries, such as spinal cord injuries (SCI), because of the resourceintensive needs of these patients, perceived low survival rates, and ‘minimal chance of ultimate rehabilitation’.”

Severe injury rehab understandably sits far below the provision of shelter, food and basic medical care on government and NGO agendas immediately following disasters.

Its value in saving lives, and rescuing survivors from a lifetime of serious limitation, however, has not been overlooked by those shaping disaster relief development.

Among them is Jianan Li, a professor and chief doctor in rehabilitation medicine and president of the Chinese Society of Physical Medicine and Rehabilitation.

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He recently shared China’s progress in disaster recovery at the World Congress for NeuroRehabilitation in Mumbai.

He said: “China has built up an emergency management system from a national network to all parts of the country. With natural disasters, the location and severity of injuries is unpredictable but certain rescue actions and disaster relief – including rehab relief – can be prepared.

“It’s very important to realise that rehab in natural disasters is very different from the normal rehab need. When any disaster happens, local medical personnel may be involved in the relief effort but may also be victims and local medical facilities may be damaged or destroyed. The most important task for the local government is not rehab but to provide settlement for survivors.

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"Institutional rehab is limited to acute and sub-acute stages, not the long-term.”

The magnitude eight earthquake which hit southwestern China in 2008 saw 11,028 hospitals and clinics destroyed, amid 87,150 fatalities and missing persons and 374,000 injuries. An SCI was sustained by around 15 per cent of all patients admitted to their nearest tertiary care hospital.

A post-event study shows the possibilities of the type of long-term rehab many disaster victims in the developing world are not afforded (Y. Li et al, 2012). It also highlights the importance of a speedy response to potentially catastrophic injuries in disaster zones.

It concludes that institutional-based physical rehab programmes for disasterrelated SCIs may significantly improve

functional outcomes.

In the aftermath of that disaster, a national rehab team formed, made up of rehab professionals from institutions in other provinces. The team provided rehab services to SCI patients and others in newly established rehab departments of three hospitals in the worst affected areas from two months to up to two years after the quake.

The study, which followed 51 severe SCI cases, shows 90 per cent resumed walking - most through KAFO (knee ankle foot orthosis).

Nearly everyone who needed a wheelchair was able to operate it independently following a rehab programme, while over 90 per cent regained some self-care ability prior to discharge. Most victims (70.6 per cent) were rescued within 30 minutes of the disaster but only one patient began

report

rehab therapy within a month – with most beginning two to four months afterwards.

“Rehabilitation effectiveness was found to be inversely related to time to rescue and time to rehabilitation,” researchers stated.

“Significant improvement in MBI scores [a measure of independence in daily tasks] with rehabilitation was achieved by groups that were rescued from the rubble within 30 mins and/or received rehab no later than three months after the injury; the group that was rescued and began rehabilitation relatively later showed the smallest improvement.

"These findings are consistent with common assumptions about neural plasticity and optimal windows of opportunities for rehabilitation.”

In other words, getting disaster victims on an adequate rehab programme quickly can have a dramatic impact on their outcome.

In China this is made more challenging due to the mountainous and remote nature of some areas – and the sheer vastness of the country; as highlighted in the SCI study’s findings.

Most of the SCI patients were discharged to mountainous, rural areas with poor roads, inaccessible public transport and noninclusive homes, it reports.

In less developed countries, building the foundations for a post-disaster rehab programme is even harder - with facilities destroyed, poor infrastructure and a dearth of on-the-ground rehab skills.

Li’s proposed solution is the mobile rehab truck – a rehab unit on wheels which could be despatched to any disaster zone in the developing world.

He said: “It needs two very important things – manpower and equipment. It would need rehab equipment, but also medical equipment such as x-rays, ultrasound and so on. We would also need sleeping bags, tents and cooking facilities. It could be moved into the poorest and most remote areas which have no rehab facilities and help to build up their first rehab infrastructure. We would set up a hospital in the disaster zone and provide services for 13 months or longer.

Only one patient began rehab therapy within a month of the earthquake

“For example, if there was an earthquake in Nepal, we could go there and work on a rolling basis until it was needed somewhere else in the world. The mobile hospital could take another vital resource there – training.

Professionals could train people working in the disaster zone and employees in the area.

“My dream would be to support it through an NGO comprised of industries, charity organisations, academic bodies and even some hospitals.”

Li is hopeful that there will be enough global interest in the idea to gain the support needed to get it motoring in the not-too-distant future.

Another useful addition to post-disaster rehab will be further advancements in telemedicine, believes Raju Dhakal, who also spoke at the World Congress in Mumbai.

Dhakal is medical director of the Spinal Injury Rehabilitation Center (SIRC) Nepal and a leading authority on spinal injury rehab in disaster zones.

He was part of the team that helped to treat spinal injuries in the aftermath of the Nepal 2015 earthquake, which killed 9,000 and injured at least 22,000 people.

Working out of SIRC – supported by spinal injury experts via telemedicine – 81 SCI patients were admitted for comprehensive care by a multidisciplinary medical rehabilitation team within four weeks of the disaster. Special cases, including a third trimester pregnancy with incomplete unstable spine fracture, undiagnosed SCIs in children, misdiagnosed spine fracture, SCI with stroke and SCI complications linked to associated injuries, were all well managed through tele-consultation.

A study into SIRC’s work found that:

“Tele-consultation through various means such as telephone, e-mail, and video conferencing can improve the quality of healthcare by aiding in diagnosis and management of patients, and to train healthcare professionals. The accessibility of specialty and subspecialty expert care can reach a larger population base thereby reducing the morbidity and mortality after SCI and eventually increasing quality of life. Information technology and modern portable communication devices should be incorporated in disaster preparedness and post-disaster SCI rehabilitation.”

Dhakal said: “At the time of the earthquake our centre had no standard telemedicine systems. Often the internet and phone lines weren’t working and sometimes we had to work very slowly, with lots of disconnections.

Despite these problems, telemedicine really helped with patient care and rehabilitation.

“The advantages of telemedicine are that there are no visas required for experts – and no travel problems or risky trips for professionals to earthquake zones. It also increases international links between healthcare experts.”

Also speaking at the World Congress was Angela Tulaar, a disaster rehab expert working in Indonesia – where there is a near-constant threat of volcanic eruptions, earthquakes, floods and tsunamis due to its position on the Pacific Ring. She provided detailed context of the challenges facing rehab staff in disaster zones. After particularly devastating earthquakes she had seen spinal injury patients having to lie on floors or in hospital car parks awaiting treatment, such is the burden disasters can put on local infrastructure. She concluded: “To plan for disasters you first must gather enough information and send the advanced team in as early as possible – then set up short and long-term goals, recruit staff and list the equipment needed. And, you must implement community-based rehab through which education and training is very important.”

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research

on the hunt for rehab evidence Global research authority Cochrane is stepping up its focus on neuro-rehab, potentially helping to tackle the field’s shortage of definitive research, it told professionals at an event recently.

Neuro-rehab’s influence within one of the world’s most relied-upon healthcare research bodies is on the rise.

Cochrane, the global organisation with systematically reviews healthcare research and underpins many of the world’s official guidelines, has provided an annual update on its fledgling rehabilitation group.

The group was launched last year to bring together rehabilitation expertise and evidence and highlight gaps where new research is needed to inform rehab decisions by professionals.

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More than 230 collaborators from 49 countries backed its launch and its reach looks to have grown considerably since.

Cochrane is made up of a network of researchers, professionals, patients, carers and people interested in health with the mission of promoting evidenceinformed decisions.

Within it, Cochrane fields are groups focused on particular healthcare areas, aimed at linking evidence produced by Cochrane with the external stakeholders who need it.

The rehabilitation field was established to help rehab professionals make decisions by combining evidence gathered by systematic reviews with their own clinical expertise.

The group is headquartered in Brescia, Italy, and run in collaboration with the University of Brescia and the Don Gnocchi Foundation.

Its director, Stefano Negrini, said at the time of its launch: “Producing and increasing the dissemination of the best available information on healthcare is critical for clinicians and patients everywhere in the world, especially in rehabilitation.

"Cochrane Rehabilitation will drive, on one side, evidence and methods developed by Cochrane to the world of rehabilitation and, on the other, convey priorities, needs and specificities of rehabilitation to Cochrane.”

The group's goals include connecting rehabilitation “stakeholders” globally, translating evidence into knowledge for all areas of practice in rehab and disseminating Cochrane’s work more widely and internationally.

Work is also underway in developing a register of rehab-relevant systematic

research

reviews and rehab-based educational activities. The group also influences the ongoing development of Cochrane’s review methods – and works to promote both the rehab community to Cochrane, and Cochrane to rehab networks.

William Levack, reviews committee chair at Cochrane Rehabilitation, says: “There was a clear gap for a rehabilitation group.

"When we first started talking about Cochrane Rehabilitation, an initial screening revealed the vast majority of Cochrane review groups had something to do with rehabilitation.

"There were at least four groups that contained over 20 reviews that related to rehab, while there are nine review groups that are directly relevant to neuro-rehab alone, so we wanted a group made up of people from all around the world in this field.

“If we think about Cochrane as a global, independent, non-profit network of research professionals, patients and carers and so on, Cochrane Rehabilitation is all of that, but for people interested in rehabilitation.

"It exists for healthcare decisions in rehabilitation.

“The group is a two-way bridge. On one hand we want to share the work of Cochrane, but we also want to inform the work of Cochrane from the perspective of clinicians, patients and policymakers in rehabilitation.”

In the next 12 months, the rehabilitation group will oversee the publishing of a rehabilitation ebook which will share rehab knowledge, while also identifying priorities for new reviews and areas of neglect not yet covered by reviews.

A director of the rehabilitation field sits on Cochrane’s Knowledge Translation Advisory Board, while two “Cochrane Rehabilitation Units” have so far submitted their “Action Business Plan”; the Turkish Society of Physical Medicine & Rehabilitation and the Nursing, Midwifery and Allied Health Professions (NMAHP) Research Unit at Glasgow Caledonian University.

A third unit has been set up at the Physical and Rehabilitation Medicine Department of the University of Campania "Luigi Vanvitelli" in Naples, which will work with Cochrane rehab's HQ in producing the new e-book.

Lectures, sessions and workshops have been held in around 20 meetings so far, meanwhile.

Cochrane's overall aim is to inform better healthcare decisions by gathering and summarising the best health evidence from research in themed systematic reviews.

While directly helping professionals to make vital decisions about interventions, Cochrane’s work also heavily influences official guidelines.

In 2016, for example, almost 90 per cent of World Health Organization guidelines produced that year used Cochrane’s systematic reviews.

Cochrane’s editor-in-chief David Tovey says: “Systematic reviews look at all the available high-quality evidence to address a particular question through a comprehensive search.

The findings of that search are fed through a filter and, as a result, you may get a pooled estimate of effects from all the studies.

“Using all of those studies you are increasing your power and precision.

"Most importantly, it also gives you an opportunity to look at the risk of bias in those studies and to look at the body of evidence and make judgements.”

Cochrane users range from doctors and nurses to patients, carers, researchers and funders, while its network of contributors spans 120 countries.

Each contributor is affiliated to the organisation through Cochrane groups, which include healthcare-related review groups, thematic networks, groups concerned with the methodology of systematic reviews and regional centres.

There is no one place or office that is 'Cochrane'. Contributors and groups are based all around the world and the majority of work is carried out online.

Each group is a "mini-organisation" in itself, with its own funding, website, and workload.

Contributors affiliate themselves to a group, or in some cases several groups, based on their interests, expertise, and/or geographical location.

As well as producing systematic reviews, Cochrane contributes to the development of the methods of evidence synthesis, in part by training people who undertake systematic reviews and in shaping primary research.

Neuro-rehab research gaps As well as informing healthcare decisions, Cochrane works to spot neglected areas of research – of which there and many in neuro-rehab. Here are some recently identified areas which, although showing promise, lack the robust data needed to support definitive decisions.

Fitness training and traumatic brain injury recovery

A review of eight studies involving 67 participants concluded that: “There is low-quality evidence that fitness training is effective at improving cardiorespiratory deconditioning after TBI; there is insufficient evidence to draw any definitive conclusions about the other outcomes. Whilst the intervention appears to be accepted by people with TBI, and there is no evidence of harm, more adequately powered and welldesigned studies are required to determine a more precise estimate of the effect on cardiorespiratory fitness, as well as the effects across a range of important outcome measures and in people with different characteristics (e.g. children).”

Interventions for eye movement disorders due to acquired brain injury

Cochrane analysed five studies, including one involving botulinum toxin and another which compared eye movement training with sham (false) training in people with mild traumatic brain injury. Cochrane said: “The included studies provide insufficient evidence to inform decisions about treatments specifically for eye movement disorders that occur following acquired brain injury. No information was obtained on the cost of treatment or measures of participant satisfaction relating to treatment options and effectiveness.”

Respiratory muscle training and MS

Cochrane’s researchers looked at various trials, including two which tested inspiratory muscle training with a threshold device, three involving expiratory muscle training with a threshold device, and one based on breathing exercises. They concluded: “This review provides low-quality evidence that resistive inspiratory muscle training with a resistive threshold device is moderately effective postintervention for improving predicted maximal inspiratory pressure in people with mild to moderate MS, whereas expiratory muscle training showed no significant effects. The sustainability of the favourable effect of inspiratory muscle training is unclear, as is the impact of the observed effects on quality of life.”

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events

Dates for your diary may 18 / 1

The Rehabilitation Prescription – past, present and future.

A look at the history of the Rehabilitation Prescription, its development and implementation, benefits and current and future usage. Relevant to clinicians working in major trauma units, trauma centres and rehabilitation settings – as well as case managers and personal injury lawyers. CPD accreditation pending from APIL and the RCP. 10am – 3.15pm, Riverbank House, 2 Swan Lane, London, EC4R 3TT. Contact admin@ukabif.org.uk / 0845 6080788 or visit: www.ukabif.org.uk.

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to investigate the cost-benefits of ‘specialism in brain injury’ and investing knowledge, time and resources to achieve positive outcomes for individuals with brain injury and their families in developing their new lives.

Central Hall, Westminster, London.

Find details on www.abisolutions.org.uk.

10

South Wales Acquired Brain Injury Forum Spring Event.

Includes an update from Chris Bryant, MP for the Rhondda who chairs the recently launched APPG for Acquired Brain Injury.

3.30pm, Hodge House, 114-116 St Mary Street, Cardiff, CF10 1DY. Email Donna.robson@ casemanagementcymru.co.uk to book.

Back Up City Dinner – an evening for colleagues, friends and family to raise funds for spinal injury causes.

6.30pm, Merchant Taylors' Hall, 30 Threadneedle Street, EC2R 8JB. Ticket only. See backuptrust.org.uk for details.

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14-20

Is it worth it? Capitalising Investment to Value Life after Brain Injury.

This year’s Head First Conference aims

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Spine Pain and Spinal Pain Treatments Course.

Oswestry, Shropshire.

See www.orthopaedic-institute.org/ courses/ for full details.

Action for Brain Injury Week.

Including Hats for Headway Day on 18th. Wear a hat, donate £1 to Headway and post a picture on Facebook, Twitter

or Instagram using the hashtag #HatsForHeadway. www.headway.org.uk

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Head Injury Information Day. A free event for professionals and people affected by all types of acquired brain injury and head injury, including families and carers.

9am – 3.30pm, DoubleTree by Hilton Hotel Glasgow, 36 Cambridge Street, Glasgow, G2 3HN. For more information contact Kirsten Smith on 0141 566 9569 or kirsten. smith@digbybrown.co.uk.

16-17

Neuram 2018 1st International Neuro-Rehabilitation Conference on Spinal Cord Injury.

A two-day neuro-rehab conference on Spinal Cord Injury in Mauritius.

Visit www.neuram.org for full details.

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Headway Teesside Seminar: Let's Talk About It A seminar for brain injury survivors, families, carers and professionals.

Covering key brain injury issues, with a number of leading medical professionals presenting.

10am - 2pm, The Bridge Care Centre, Middlesbrough.

Free but booking required via headwayteesside@aol.com.

events

jun 18 / 5

Brain Injury Group: Training Clinical Negligence - Hydrocephalus.

7 Bedford Row, London, WC1R 4BS, email: julie.mccarthy@ braininjurygroup.co.uk.

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British Society of Rehabilitation Medicine (BSRM) / British Association of Spinal Cord Injury Specialists (BASCIS) Spinal Cord Medicine (SCM) course.

Novotel Hotel, City Centre, Sheffield.

Call 0114 226 6762 or email carolyn. sutton@sth.nhs.uk.

6-7

European Neuro Convention.

Europe’s “only trade event for brain and spine”. Event focuses on diagnostics, surgical equipment, rehabilitation and brain stimulation.

Excel London.

See www.neuroconvention.com for details.

13-|14

BABICM Annual Conference: Money, Money, Money and how to spend it.

Two days of practical and strategic advice. St John’s Hotel, Solihull, Birmingham. See babicm.org for details.

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The Rubik’s Cube of Childhood Brain Injury: The Children’s Trust’s national paediatric brain injury conference, held in partnership with Irwin Mitchell.

Event takes a closer look at the puzzling complexities, connections and challenges of acquired brain injury in children and young people.

Speakers include international neuroscientist, clinician and author, Dr Lucia Braga, The SARAH Network; Mr Simon Stapleton, consultant neurosurgeon, St. George’s Hospital; Dr Vijeya Ganesan, senior lecturer in paediatric neurology and honorary consultant paediatric neurologist, Great Ormond Street Hospital.

9am – 4.30pm (followed by drinks reception), The Royal Society of Medicine, London. To book visit www.thechildrenstrust.org.uk/ conference.

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An interdisciplinary team approach to the management of patients in prolonged disorders of consciousness.

8.45am – 4.30pm, The Royal Hospital for Neuro-disability, West Hill, Putney, London, SW15 3SW. Visit www.rhn.org. uk/docstudyday for details.

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The Way Ahead.

A weekend event bringing together over 300 delegates including brain injury survivors, family members and carers. Staffordshire. Find details on www.headway.org.uk.

save the date 26 nov 2018

Elysium Neurological and Swansea University's annual conference.

Last year's well attended event focused on neurobehavioural disability after acquired brain injury: advances in the management of social handicap.

Details of this year's event, to be held in Swansea, will be announced soon. www.elysiumhealthcare.co.uk

To list your event in NR Times contact chloe@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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clocking off

Back to the future

In this era of moneysaving experts, thriftiness is all the rage – and now brain surgeons are getting in on the act. They want to use your old battered iPhones for delicate operations. Researchers in Brazil have tested whether neuro endoscopes (devices with tiny cameras) can be paired up with iPhones 4, 5 and 6 instead of pricey video equipment.

Some 42 operations were carried out over five years with no tech complications recorded.

Land ahoy!

An unnamed philanthropist has donated a £1m piece of land to a couple hoping to build a new disability care centre in Bicester, Oxfordshire. Rachael and Ian Scott-Hunter told reporters they were in tears when they heard of the "incredible" donation. They were inspired by their experience of caring for their daughter Alexandra and hope their new centre will plug a gap in services and “make a stand for people with severe learning difficulties who have faced countless cuts to their care”. Good luck to all involved.

Brain freeze An American start-up is accepting US$10,000 deposits from customers who sign up to have their brain preserved for eternity. Nectome plans to back up your mind, perhaps with a view to having it transferred to a computer, robot or cyborg soldier at some point in the future. There is one catch, however. You are 100 per cent guaranteed to die if you use the service. The company is merely concerned with ensuring your brain lasts for hundreds to thousands of years – in that time, it believes the technology to upload or copy a brain’s information will emerge. Customers will be sedated and hooked up to an artificial heart-lung machine. A chemical preservative will then be pumped in through the carotid artery. The brain will be “exquisitely wellpreserved” unlike with cryonics which can cause cell damage. Nectome recently won an US$80,000 government grant after showing that it could preserve a pig brain so well that all the synapses were intact and visible with electron microscopy. Around 25 brave souls have signed up to its latest experiment so far.

Out of this world

Ever wondered how the brain would process alien music? Perhaps not; but the Max Planck Institute for Human Cognitive and Brain Sciences has, and has even published an indepth report on it. It concludes that humans would be able to appreciate extra-terrestrial music as long as it featured “local and nonlocal dependencies” (eg verses and choruses).

We can all rest easy now Max has cleared up this vital area of research.

Legacy lives on Even after he left this cosmos, Stephen Hawking’s enduring contribution to motor neurone disease causes continued. News of his death prompted a surge in donations to the MND Association so strong that the charity’s website crashed under the pressure. "Through so many years in the public eye he did a huge amount to raise awareness of motor neurone disease, yet he never allowed himself to be defined by his illness,” said chief executive of the charity, Sally Light. "His approach to life with MND is an example to us all."

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