NR
ISSUE 1 Winter 16
NEURO REHAB
GAME CHANGER The inconvenient impact of football on the brain
TIMES
HIDDEN SCANDAL TBI and tragedy expose mental health cover-up BEATING THE BAN The benefits of cannabis and the calls for change
In association with
FINAL FRONTIER MAKING CONTACT IN THE UNCONSCIOUS UNIVERSE
STREET BATTLE Solving the puzzle of the homeless and brain injured
WHAT'S THE PLAN? Ex-NHS clinical director on the future of neuro-rehab
TURNING IT UP Why units are marching to the beat of music therapy
AN INDEPENDENT VOICE BACKED BY LEADING EXPERTS NR Times is produced in association with the UK Acquired Brain Injury Forum (UKABIF). While a third of any profits generated support UKABIF’s work, the charity’s board of experts serves as an editorial panel to ensure our content informs and inspires readers throughout neuro-rehab. “We believe this is a vital new resource for brain and spinal injury professionals of all disciplines. It will enable them to keep up with the very latest research
THE NEW
QUARTERLY MAGAZINE...
Reaching every key decision-maker and discipline within neuro-rehab. NR Times is the only regular publication dedicated to helping brain and spinal injury professionals work smarter and stay informed on the very latest breakthroughs and developments in their field.
developments and advancements every quarter; and gain expert advice on improving the way we all do things.“ Professor Mike Barnes, chairman, UKABIF
GETTING INVOLVED In 2017 advertisers will be able to reach every brain and spinal injury professional in the UK. That includes: Leaders and key medical staff at every independent neuro-rehab provider in the UK Lead doctors and nurses working independently and in the NHS Neuro occupational and speech therapists with brain and spinal injury clients Private and NHS neuropsychologists Physiotherapists with an interest in neurology Specialist lawyers and solicitors Plus CCGs, third sector leaders, equipment makers, regulatory bodies and many more.
NEURO REHAB
NR
TIMES
Visit www.nrtimes.co.uk
To read more from the world of neuro-rehab
Email info@nrtimes.co.uk
For a copy of our media pack and to find out how to become an NR Times partner.
WELCOME
EDITOR'S NOTE
Welcome to the launch edition of NR Times, which brings together the many professions working with brain and spinal injury clients in the UK.
If Whitehall health bods scanned these pages to assess the state of neuro-rehab, what conclusions would they draw? Firstly, they’d probably recognise the vast and nebulous nature of a field whose borders continue to expand. Football changing rooms, robotics labs, uni campuses and homeless shelters were just a few stops on the journey for this edition. They’d also see that the many disciplines in the field face several collective challenges. Not least is the fight to be heard in the cacophony of other voices when the big NHS decisions are made. Colonel John Etherington was, until recently, the national clinical director of rehabilitation and recovery in the community. With the dust barely settled on his appointment, his role was scrapped in an act of ‘streamlining’. He tells us why rehab needs more funding, a louder collective voice and a seat at the top table of the NHS. Neuro-rehab, meanwhile, is being hamstrung by an identity crisis. As our report into every CCG in the country shows, many hospital authorities don’t differentiate it from other types of rehab. The result is a lack of the meaningful data needed to help improve outcomes and funding decisions. Another challenge, which presents itself in many guises in this edition, is the struggle for quality evidence to support new ways of doing things. Encouragingly, experts in various quarters tell us about their breakthroughs on that front. They include music therapists,
neuropsychologists and tech pioneers. Sometimes progress comes from the determined few who refuse to give up on their crusade for change. This is personified by our two interviewees, Dawn Astle and Joanna Lane. Find out how they have both brought relatively unknown brain conditions to the fore – and continue in their own David-vs-Goliath battles against the authorities. I hope you find plenty to inform and inspire you in this publication. Before our next issue, out in March, I’d be delighted to hear from you if you have a story or topic you'd like us to cover. In the meantime, I wish you happy reading and a prosperous New Year. Andrew Mernin editor@aspectpublishing.co.uk
Published by Aspect Publishing Ltd in association with UKABIF Aspect Publishing, 20-22 Wenlock Rd, London, N1 7GU Registered company in England and Wales No. 10109188 All contents ©2016 Aspect Publishing Ltd.
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CONTENTS
06
NEWS The latest from the world of neuro-rehab
16
GAME CHANGER The inconvenient truth about football and the brain and why the deadly condition CTE can no longer be ignored
24
INTERVIEW Exposing the hidden threat of hypopituitarism
33
WHAT HAPPENS NOW? Ex-clinical director for rehabilitation speaks out on the demise of his role
30 ILLEGAL GAINS Making the case for cannabis in neuro-rehab as cross-party MPs push for legalisation
04
NRTIMES
CONTENTS
48
The smart pioneers deepening the search for awareness in COVER STORY the unconscious
36
STREET BATTLE The shocking stats on homelessness and head injuries - and how to fix them
42
CONDITION UPDATE Motor neurone disease in focus; challenges, treatments and the outlook for patients
52
STRIKING A CHORD New findings spark surging demand for music therapy in neuro-rehab
56
EVENTS Dates for your diary in the months ahead...
58
CLOCKING OFF
Musings from the sidelines of neuro-rehab NRTIMES 05
Widespread poor data and inconsistent approach to neuro-rehab among CCGs, NR Times finds
We are unable to differentiate between neuro-rehab and other types of rehabilitation
06
NRTIMES
M
ore than a third of hospital
At some CCGs, the final decision appears
authorities have no record of the
to land on the desk of a single senior
proportion or cost of neuro-rehab
professional, however.
Neuro-rehab device demand soars
The global neuro-rehab devices market
they are outsourcing to private firms, NR
While most CCGs have clear steps to follow
Times has found.
for funding applications, certain CCGs said
Research into the management of brain
no formal process exists, with the approvals
injury, stroke and neurological conditions
process changing on a case-by-case basis.
by Clinical Commissioning Groups (CCGs)
In other examples, the CCG said it has no
reveals a widespread lack of knowledge
involvement in the application process and
about the neuro-rehab pathways they
no information about how inpatients access
are influencing.
neuro-rehab.
Our study, involving Freedom of Information
Instead they pointed to the role of healthcare
requests to every CCG in the country, also
trusts in the process.
highlights inconsistencies in the way neuro-
The pace of decision-making also appears
rehab care is commissioned.
to vary. In one instance decisions are made
Less than 16% of CCGs were able to say
by a board which meets every two weeks.
how many patients with brain injury, stroke
In another example, daily ‘white board
or neurological conditions were allocated
meetings’ attended by ward staff help to
neuro-rehab care in 2015/16.
progress applications towards conclusion.
Even fewer had a breakdown of whether
Generally funding for neuro-rehab is agreed
those patients accessed their care through
for 12 weeks, with reviews taking place after
an inpatient facility – or what proportion
anything from six to 10 weeks.
involved independent providers.
Some CCGs put their lack of clear data on the
Of the 18 CCGs with this data, eight said they
treatment of people with brain injury, stroke
used only NHS neuro-rehab facilities,
and neurological conditions down to the way
while four were 100% reliant on
they classify cases.
independent providers.
"We are unable to differentiate between
Only a handful had a relatively even split
neurological rehabilitation and other types of
between the two.
rehabilitation," was a common response.
Almost every CCG could identify the number
Perhaps the current drive to improve the
of patients admitted to acute services with
way the NHS harnesses data will give CCGs a
symptoms that ultimately led to a stroke or
clearer picture of neuro-rehab provision
brain injury diagnosis.
in future.
Yet, once those patients progressed through
In the government’s 2015 spending review,
the system, data collection by the CCG
£4.2bn was committed to fund the
apppears to have dried up in many cases.
digitisation of the NHS.
The responses also showed notable
The National Information Board, which
differences in the way funding for referrals
oversees the ‘big picture’ of IT in the NHS, has
to independent neuro-rehab facilities is
since set out its key areas of focus.
The report points to the example of Ectron
approved and allocated.
Among 10 so called ‘delivery domains’ is ‘data
Ltd, which has collaborated with Bioness
In the majority of CCGs, panels of some
outcomes for research and oversight’.
Inc and Tyromotion for the distribution of
description are involved in the decision to
has been valued at over £720m and is estimated to reach £2.5bn by 2024. Industry analysis group Research and Markets says the increasing prevalence and incidence rates of neurological disorders has created a huge demand for neuro-rehab devices. Furthermore, the rising awareness of neuro-rehab services among care providers is contributing to the increasing adoption of these devices. In addition, consistent technological advancements are leading to the introduction and commercialisation of novel products in the sector. The majority of manufacturers and distributors of neuro-rehab platforms are headquartered in North America. Unsurprisingly, Europe is home to the second highest amount of such companies amid rising awareness and increased adoption of novel technologies. The Asia Pacific market is growing at the fastest rate, largely due to it increasing population and improving healthcare infrastructure. Despite fluctuating economic conditions across different geographical regions, coupled with respective regulatory pressures, companies offering neurorehab devices and services are exhibiting adaptability and efficacy, the report says. Collaborations for novel product development and strengthening of distribution networks are some of the strategic initiatives implemented by key players.
their products across different
approve or reject funding applications for
Go online to read more on our findings:
private neuro-rehab care.
www.nrtimes.co.uk
geographical regions.
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