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.
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atomic age Microscopic miracles in stroke recovery
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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. 04
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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
MORE NEWS
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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.” MORE NEWS
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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