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.
NRTIMES 03
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.
MORE NEWS
NRTIMES 07
A stroke patient in a speech therapy session
New drug limits brain damage caused by stroke and quickens repair
damage after stroke have proved unsuccessful. It is hoped that this new research offers the possibility of a new treatment being developed. What sets IL-1Ra apart from other drugs that
Researchers at the University of Manchester
new treatment for stroke.
have previously failed to progress as a treatment
have discovered a potential new drug that
The drug is already licensed for use in humans
for stroke is its potential ability to promote the
reduces the number of brain cells destroyed
for certain other conditions, including
birth of new cells, which are thought to help
by stroke and then helps to repair the damage.
rheumatoid arthritis.
restore function to areas of the brain damaged
A reduction in blood flow to the brain caused
Several early-stage clinical trials in stroke
by stroke.
by stroke is a major cause of death and disability,
with IL-1Ra have already been completed in
Earlier work by the same group of researchers
and there are few effective treatments.
Manchester, though it is not yet licensed for
showed that treatment with IL-1Ra does indeed
A team of scientists at the University of
this condition.
help rodents regain motor skills that were
Manchester has now found that a potential
The research, published in the biomedical
initially lost after a stroke.
new stroke drug not only works in rodents, by
journal, 'Brain, Behavior and Immunity', shows
Early stage clinical trials in stroke patients also
limiting the death of existing brain cells, but
that in rodents with a stroke there is not only
suggest that IL-1Ra could be beneficial.
also by promoting the birth of new neurones
reduced brain damage early on after the stroke
The current research project is led by Professor
(so-called neurogenesis).
but, several days later, increased numbers
Stuart Allan.
The findings could pave the way for the
of new neurones, following treatment
“The results lend further strong support to the
development of the anti-inflammatory drug,
with IL-1Ra.
use of IL-1Ra in the treatment of stroke, however
interleukin-1 receptor antagonist (IL-1Ra), as a
Previous attempts to find a drug to prevent brain
further large trials are necessary,� he said.
08
NRTIMES
Epilepsy guidelines updated
Scotland steps up brain injury screening
Removing certain neurons after a brain injury could reduce the risk of
Offenders taken into police
epilepsy, research suggests. Extracting granule cells - a particular type of
has updated its guidelines
custody in Scotland are to be
neuron – in an individual with epilepsy after a brain injury could alter the
on epilepsy. A new factsheet
screened for brain injuries as
course of the disease. According to the study, published in the US-based
has been written for brain
part of a pilot project.
Journal of Neuroscience, granule cells generated in the weeks before and
injury survivors who are at
As evidence linking brain
after an epilepsy-causing brain injury can abnormally integrate into
risk of or who have been
injuries and criminal activity
certain areas of the brain, mediating the development of temporal lobe
diagnosed with epilepsy.
grows, inmates at two
epilepsy. The authors, based in Cincinnati, said: “These findings support
It contains information on
Scottish police custody centres
the long-standing hypothesis that newly generated granule cells are
what epilepsy is, how it is
will be asked whether they
pro-epileptogenic and contribute to the occurrence of seizures.”
diagnosed and how brain
have suffered head injuries in
Researchers induced status epilepticus in a rodent model using a chemical.
injury survivors can have
the past.
Three days later they removed the granule cells from the animals’ brains
better control over their
The pilot scheme is being run in
that had been generated up to five weeks before the chemical insult. They
seizures. It is available via
collaboration with the NHS, the
subsequently noticed a 50% reduction in seizure frequency. The scientists
headway.org.uk.
Scotsman reports.
also noticed a 20% increase in seizure duration, which wasn’t expected.
Brain injury charity Headway
More funds for spinal injuries, urges SIA
Cell removal could treat post-brain injury epilepsy
Statement lacks spinal injury support
A prominent spinal injuries group has criticised the government for failing to address the challenges facing the severely injured. The Spinal Injuries Association (SIA) said it was extremely disappointed that November’s Autumn Statement failed to bring forward any additional funding for social care or NHS-funded 'continuing healthcare'.
The organisation said: “Around £4.6bn has been removed from the social care budget since 2010; and nothing at all has been promised for the thousands of spinal cord injured (SCI) people who rely on care services from their local councils and the NHS to maintain their health, wellbeing and independence. “Many SCI people are reporting reductions or restrictions on this vital care provision, severely limiting their ability to live independently. A recent SIA survey revealed that 24% of respondents have had their social care or continuing healthcare package reduced in the last two years. 17% of respondents reported ‘severe problems’ due to the limitations of their care packages and 39% felt limitations on their care limited their family and community life. Nearly 30% have been told that there is a cap on their care provision.” It added that solving the care crisis will require more than the insufficient funds the government has promised for coming years. It also called on the government to allocate sufficient sustained funding
Many SCI people are reporting reductions in vital care provision
for both social care and NHS-funded continuing healthcare; and to ensure that the most vulnerable in society are spared the fear of ongoing cuts to this vital support.
MORE NEWS
NRTIMES 09
Better prognosis needed for TBI, says expert
Experts seek to improve management of long-term brain injury consequences
useful for prediction at the population level than for guiding decisions concerning individual patients.” Professor Menon, who co-chairs the Acute
‘Surviving to thriving with acquired brain injury’
why prognosis of traumatic brain injuries (TBIs)
Brain Injury Programme at the University of
was the theme of a major conference in
needed improvement.
Cambridge, also discussed some of the models
London recently.
“Neurotrauma is a major cause of neurodisability
available and the prognostic calculators.
UKABIF focused its annual conference on
globally but the prognostic indicators for
“We’ve come a long way but much more work is
the long-term consequences of brain injury
rehabilitation are not well-defined,” he said.
required,” he concluded.
and rehabilitation challenges following the
“Prognosis in TBI is difficult but important,
Dr Caroline Ellis-Hill, a lecturer in qualitative
re-organisation of trauma care. The status of
because it guides appropriate treatment, tries
research at Bournemouth University, discussed
predicting outcomes and new approaches to
to limit the proportion of patients left in a
two examples of the 'lifeworld' approach to
rehabilitation management were also high on
persistent vegetative state, helps the family
rehabilitation; the HeART of Stroke project and
the agenda.
come to terms with their loved one’s condition
the humanisation care project.
Professor David Menon, head of the department
and assists with future planning. Clinical and
The HeART of Stroke is a feasibility study of
of anaesthesia and principal investigator at
physiological variables, radiological predictors
a randomised controlled trial of an Arts for
the Wolfson Brain Imaging Centre, explained
and biological markers all exist but are more
Health (AfH) group intervention, to support
10
NRTIMES
Lifeworld is a very different logic to traditional rehabilitation...It's early days but we're very enthusiastic about this developing approach
self-confidence and psychological wellbeing
injury proved to be an enormous challenge,
principles into their everyday practice and
following a stroke. Health services currently
but a necessary requirement to managing his
organisational context.
focus on the practical and visible aspects of life
rehabilitation long-term.
Practitioners use key Bridges principles
and ignore the emotional challenges. Through
Also on the agenda at the conference was
supported by co-produced self management
the use of the imagination, AfH practices offer
self-management.
tools given to patients and families.
the opportunity for self-development. Within a
Self-management programmes are not new but
Dr Petra Makela, consultant in rehabilitation
group setting, a collective sense of identification
they are rare in brain injury and stroke. The aim
medicine at Imperial College Healthcare NHS
and belonging facilitates the process of self-
is to achieve small successes that influence an
Trust, discussed the successful implementation
development and acceptance, and instils a sense
individual’s confidence in their recovery, to find
of Bridges at Kings College London's Major
of self-confidence.
a way of identifying what is meaningful and to
Trauma Centre (MTC). The plan is to
The humanisation care project involved working
provide ways of navigating the challenges.
disseminate Bridges across the other three
with staff and patients in two hospitals with the
Professor Fiona Jones, reader in rehabilitation
MTCs in London and to introduce a short
aim of humanising stroke services by applying a
at St George’s University, London, and Kingston
teaching/dissemination film to explain the
deep philosophical theory to everyday practice.
University, described the Bridges self-
project and its benefits.
The project was said to be very successful.
management programme which comprises a
Jill Greenfield, a partner at Fieldfisher in London,
“The lifeworld approach is not an ‘instead of’,
package of support to address
spoke about two of her clients; Phil aged 64
it’s an ‘as well as’ and it’s a very different logic to
self-management in people with complex
with dementia who subsequently had a head
traditional rehabilitation,” said Dr Ellis-Hill.
conditions like brain injury.
injury, and Nathan, aged 18, who was thought
“It’s early days, but we’re very enthusiastic about
Founded in 2013, Bridges is used by more than
to have ADHD. Both these individuals were
this developing approach."
120 healthcare teams and 1800 clinicians and
‘labelled’ incorrectly and, following intervention
Paula Kersten, professor of rehabilitation at
support workers across acute and community
by Jill and further clinical tests, were found to
Brighton University, meanwhile, highlighted the
settings. It trains teams of healthcare
require long-term rehabilitation. “Every case is
power of peer mentoring.
professionals and support workers to integrate
different but authorities don’t always look at the
Its aim is to offer support from those who
key self-management support strategies and
individual,” she said.
have successfully faced a similar experience, providing good counsel and empathetic understanding due to their comparable experience. A randomised controlled trial compared a novel peer mentoring approach in six people with moderate to severe TBI. Meeting and talking to mentors provided a sense of hope and built self-confidence, however, there were tensions for mentors in terms of the expectations of the role and they too needed a lot of support. “Although it was a small study, peer mentoring undoubtedly had a positive impact,” said Professor Kersten. Sam Shephard, an UKABIF trustee who lives with an ABI, talked about his relationship with rehabilitation. Engaging with the world post-
Self-management's on the rise in neuro-care
MORE NEWS
NRTIMES
11
Following my own life-changing injury, I vowed to develop facilities in the UK
Gold standard: London 2012 Paralympic rowing champion David Smith undergoing locomotor training
Trialling the Xcite machine at Neurokinex
The UK rehab centre home to new US tech
Ground-breaking US rehab therapies come to Britain
improve the health, wellbeing and independence
the legs and trunk is repetitively sent to the
of so many individuals living with paralysis.”
spinal cord.
As the first ‘international community fitness
The sensory input comes from the stepping
and wellness affiliate’ of NRN, Neurokinex can
motion, the manual contact of the therapist on
deliver its protocols and therapies to people in
the participants and the contact of the sole of the
the UK and Europe.
foot on the ground.
A
Its CEO and founder Harvey Sihota said:
The nervous system effectively re-learns motor
n American neuro-rehab network
“I first became aware of their work following
patterns associated with walking.
pioneered by the late Superman actor
my own life-changing injury and I vowed to
NMES, developed by the NRN, targets many
Christopher Reeve has expanded into
develop facilities here in the UK to offer
muscles at the same time during a useful
the UK. The Reeve Foundation’s NeuroRecovery
activity-based rehabilitation.”
movement, using parameters that activate the
Network (NRN) develops and delivers therapies
Initially at its Gatwick site, Neurokinex is now
spinal cord.
to promote functional recovery and improve the
offering the NRN protocols of locomotor
This, combined with the precise administering
quality of life for people with paralysis.
training and neuromuscular electrical
of the electrical stimulus to move the muscle
It combines new technologies and scientific
stimulation (NMES).
or paralysed limb, excites the central
breakthroughs to broaden its understanding of
Locomotor training emerged from recent
nervous system in such a way that it can
neuroplasticity. It was originally conceived by
advances in the understanding that the spinal
promote neuroplasticity.
Christopher Reeve, who believed the way forward
cord can interpret sensory information below
NMES is administered as part of active
for rehabilitation from spinal cord injury was to
the level of injury and relay signals to generate
therapy, when the client is completing a
provide activity-based therapies that promote
a motor response. The treatment can awaken
movement under their own control.
functional recovery. Reeve became a quadriplegic
dormant nerve pathways by repetitively
The electrodes are applied to the relevant
after being thrown from a horse in 1995.
stimulating the muscles and nerves in the
area being worked and the electrical stimulus
To date, NRN has been restricted to the US,
lower body and thus retrain the spinal cord to
is administered while the individual performs
across 11 sites. It is now available in the UK,
‘remember’ the pattern of walking. It involves
an exercise. In this way, the signals start to
however, thanks to an agreement with a British
individuals living with paralysis repeatedly
develop new pathways or strengthen existing
neuro-rehab group.
practicing standing and stepping using body
ones in the spinal cord circuitry.
Neurokinex, which provides activity-based neuro-
weight support on a treadmill.
The programme is set and tracked on the
rehab at centres in Gatwick, Watford and Bristol,
The participant is suspended in a harness while
Restorative Technologies Xcite machine,
has been chosen as an affiliate of the NRN.
specially-trained therapists and technicians
which comprises a touchscreen that enables
Peter Wilderotter, president and CEO of the
move their legs to simulate walking at a
manipulation of therapy parameters to give
Reeve Foundation, said: “Our partnership enables
normal pace.
pinpoint accuracy of settings while charting the
us to deliver cutting-edge interventions that
At the same time, sensory information from
progress of each individual.
MORE NEWS
NRTIMES
13
Audit uncovers commissioning and capacity failings at trauma centres
O
NLY 5% of people admitted to
in continuing to justify the effectiveness of
of specialist rehabilitation. The shortfall in
major trauma centres gain access to
specialist rehabilitation.
capacity of the specialist rehabilitation
specialist inpatient rehabilitation,
The involvement of rehabilitation medicine
services causes a backlog in the acute services,
a report suggests.
(RM) consultants within the major trauma
with many patients having to be sent back
The UK-wide study also shows significant
centres (MTCs) also varied. Some networks
to their local general hospital to wait for a
variations between regions in the provision
funded sessions and had up to six RM
specialist rehabilitation bed, which may or may
available to people with traumatic injuries.
consultants working in major trauma, while 18%
not materialise.
An estimated 950 patients per year receive
of the centres had no RM consultant input at all.
The report recommends that commissioners
care from inpatient specialist rehabilitation
Provision was particularly poor in London
and providers within each major trauma
services, according to the National Clinical Audit
where there was only one MTC-funded session
network work together to review the capacity
of Specialist Rehabilitation (NCASRI) following
for an RM consultant across the four large
and pathways for specialist rehabilitation
major Injury. That makes up just 5% of the
networks in the city.
following major trauma.
adults admitted to major trauma centres.
Only half of the major trauma networks
This is especially important for services that
Provision is varied considerably across the
currently use a specialist rehabilitation
focus on cognitive behavioural and
country, ranging from one to eight beds for adult
prescription to direct the care for patients with
‘hyper-acute’ rehabilitation for patients with
trauma patients per million population, the
complex needs after they leave the MTCs.
challenging behaviours or high levels of
report says.
The establishment of major trauma networks in
medical dependency.
NCASRI is the first study to examine the
England in 2010 led to marked improvements
It also says that MTCs should ensure that
provision of specialist rehabilitation following
in care for patients who have suffered severe
patients with complex rehabilitation needs are
major trauma in adults.
injuries. Many of those who would previously
seen by an RM consultant and directed to the
It concludes that under-commissioning
have died at the scene of the accident now
appropriate specialist rehabilitation service to
is a significant problem among specialist
survive thanks to the coordinated care they
meet their needs in a timely manner.
rehabilitation services.
receive in MTCs.
MTCs which do not currently have sufficient
In comparison with national standards,
However, the rehabilitation of severely injured
funded sessions for an RM consultant to visit at
between half and two-thirds of the specialist
patients is complex. For some patients it will
least two to three times per week should fund
rehabilitation units had insufficient staffing to
be many months before they are ready to leave
these positions.
manage a complex caseload.
hospital and get back home.
Other suggestions include service
Less than three quarters of patients had cost
When the major trauma networks were set up,
commissioners in NHS England and Clinical
efficiency data available. This data is important
no provision was made for the establishment
Commissioning Groups ensuring commissioned
The shortfall in capacity causes a backlog in acute services, with many patients having to be sent back to their local general hospital 14
NRTIMES
Demand for post-trauma rehab eclipses capacity
rates for specialist rehabilitation services
encourage major trauma networks and their
independent life," he explained.
are sufficient to provide care that meets the
commissioners to find ways to improve access to
He added that in the re-organisation of trauma
national standards.
specialist rehabilitation.”
care, rehabilitation services have not faired well.
The report also urges rehabilitation providers
The NCASRI audit was commissioned by the
These services lack coordination, bed blockage
and commissioners to investigate reasons for
Healthcare Quality Improvement Partnership
continues to be an issue and the demand and
delays in accessing services to avoid a
(HQIP) as part of the National Clinical Audit
timeliness for rehabilitation is an increasing
negative impact on long-term outcomes for
(NCA) Programme.
problem, he said.
those patients.
Dr Andy Eynon, director of major trauma at
“We need rehabilitation consultants involved at
Prof Lynne Turner-Stokes, president of the
the University Hospital, Southampton NHS
the MTC.
British Society of Rehabilitation Medicine,
Foundation Trust, spoke recently at a gathering
"Rehabilitation needs to be integrated into
said: “The results in this report show the need
of neuro-rehab professionals about the
the acute aspects of trauma care otherwise
for better access and provision of specialist
reorganisation of emergency medicine.
decisions are left to consultants who don’t know
rehabilitation in some major trauma networks.
“The chances of surviving trauma have improved
anything about rehabilitation.
It highlights the lack of adoption of some
by 60% in three years – it’s definitely been
"Rehabilitation prescriptions are a necessity
national standards, especially in terms of access
a success,” he told delegates at the UKABIF
and increasingly rehabilitation will take place
to consultants in rehabilitation medicine and
annual conference.
in people’s homes, so a working relationship is
the completion of the specialist rehabilitation
"Many patients will also need a personalised
required between the NHS, third sector and the
prescriptions for more complex patients.
rehabilitation programme involving an
private sector to ensure a seamless and holistic
From the recommendations of the report, I
interdisciplinary team to help them return to an
service is provided.”
NRTIMES
15
INTERVIEW
PLAYING THE LONG GAME
F
ootball’s alleged culture of bungs and backhanders was thrown under the floodlights in September culminating in the sacking of England manager Sam Allardyce. In the same month
It’s 14 years since Jeff Astle died of a brain disease caused by heading footballs. His daughter has since been raising awareness of the link between football and CTE, but the game’s defences against investigating the problem have been impenetrable. As Andrew Mernin discovers, however, her work may be finally paying off.
as the Telegraph’s exposé of
under the table deals, came another revelation to unsettle the custodians of the game. The University of Stirling delivered the first piece of evidence to suggest heading footballs may be damaging to young people’s brains. With only 19 youth players tested, the study was relatively small. Its findings, however, could have significant repercussions. A machine fired balls to replicate corner kicks, with players heading them numerous times. Brain function was tested before and after, with small but significant changes noted over the subsequent 24 hours among players who headed the ball at least 20 times. “If I were a parent of a kid with an exam on a Wednesday, I would suggest they miss football training on the Tuesday,” warned co-author and neuropathologist Dr Willie Stewart. The news was no surprise to Dawn Astle, whose father Jeff, the former West Brom and England striker, died of ‘industrial disease’ caused by heading footballs.
16
NRTIMES
INTERVIEW
Having been diagnosed with early onset dementia, a coroner’s report revealed the true impact his career as a prolific scorer of headed goals had on his brain. Dawn says: “If John Terry saw what my dad went through, not even remembering he had been a footballer, and choking to death, he would never head a football again. I honestly believe that.” Jeff Astle was the first known case of chronic traumatic encephalopathy (CTE) - traditionally known as boxer’s brain - in a footballer. CTE is a progressive degenerative brain disease in individuals with a history of repetitive brain trauma, including symptomatic concussions and asymptomatic subconcussive hits to the head. The trauma triggers progressive degeneration of the brain tissue, including the build-up of an abnormal protein called tau. These changes can begin months, years or decades after the last brain trauma. They are associated with memory loss, confusion, impaired judgement, impulse control problems, aggression, depression and progressive dementia. Following her father’s death as a result of CTE in 2002 at age 59, Dawn launched the Jeff Astle Foundation to encourage research into the dangers of heading footballs. Her battle has been marked by indifference, silence and mostly empty promises from footballing authorities. “The coroner ruled that being a footballer killed my dad. In any other industry that would have had earthquake-like repercussions. Think of asbestos in factories, for example. But not football. They tried to sweep his death under the carpet. It was the last thing they wanted the coroner to say. The FA wasn’t interested and initially didn’t acknowledge what had happened to dad.” The FA and PFA did promise a 10-year investigation in 2002 into the risks of heading a ball but this ultimately amounted to nothing. The 20 to 30 young people involved dropped out of the game and the investigation was discontinued. Dawn discovered this years later from a journalist, much to her surprise. “We were stunned. It was a disgrace, especially from the PFA whose job is to represent players.” Parallels are clear between Dawn’s campaign, and the struggles of Bennet Omalu, a forensic
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INTERVIEW
Concussion awareness crusader Dawn Astle
18
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INTERVIEW
Not one person has mentioned suing for compensation. They just want to find out the truth
pathologist who discovered links between
very strong and active. He collapsed when he
American football and CTE. For Dawn’s cold
was 52 and died days later of a brain bleed.
shoulder from the FA and friends, read the
He would always suffer headaches which
opposition of legions of lawyers, doctors
often kept him in bed for a few days. He was a
and brand protectors in the lucrative NFL
centre half and often said heading the ball left
club. Although his fight for change goes on,
him with headaches.
the game did eventually donate US$12m to
“Another footballer’s daughter told me that
support CTE research.
her dad was one of three brothers who were
For Dawn too, there are signs that the
all professional footballers. All three ended
footballing world is finally listening.
up with a brain disease. Also, my dad was the
This winter she will attend an FA symposium
number nine for West Brom. The number nine
at which the risks of CTE in football will be
before him died from Alzheimer’s and the
discussed with medical experts. In the longer
same thing happened to the number
term, she hopes for robust, in-depth research
nine before him.
to be undertaken.
“If you look at the 1966 World Cup
“Firstly we need a longitudinal study into
winning team, Martin Peters, Nobby Stiles
the impact of heading footballs and it must
and Ray Wilson have all been diagnosed
be independent. If you look at the NFL, they
with Alzheimer’s.”
initially did their own study and said there
If the scale of CTE problems in ex-footballers
was nothing happening. It later transpired
is to be properly investigated, more brain
that they did know the risks.
samples must be donated by families and
“A lot of people say CTE in football is a
loved ones of the deceased.
generational thing and that it won’t happen
“It’s brutal to see a dad, brother or husband
nowadays because the balls are lighter. But
going through these problems. It can be a very
that’s a red herring because they travel at a
distressing time but some are willing to agree
greater speed now. We don’t know whether a
to it. Not one person has mentioned anything
big heavy leather ball soaked in water would
about suing for compensation. They just want
make a difference. Personally I don’t think it
to find out the truth. It’s the not knowing that
would because new balls still result in a blow
drives you mad. Once that person has been
to the head causing the brain to move in
buried or cremated it’s too late and they will
the skull.
never know.”
“Another thing that could be done
Dawn hopes her upcoming date at FA towers
relatively cheaply is to look back at our
will be a catalyst for change. She would
former players and simply ask, have a
also like to see more measures to protect
disproportionate amount of them been
grassroots players from brain injuries.
diagnosed with dementia?”
“Grassroots football does not have a doctor on
The evidence Dawn has accumulated from
the sideline. Kids would carry on playing even
emails and letters from concerned families,
if their leg was hanging off so if there is a head
suggests the answer would be yes – but
collision the choice of whether they come off
unequivocal proof is needed.
or stay on, should not be with the parents. It
“One lady’s dad played in the 50s and 60s at a
should be in black and white in guidance from
local level. He never smoked or drank and was
the football authorities.”
Investigating CTE in future Dr Michael Grey, a motor neuroscience expert at Birmingham University, envisages future research into CTE and football as being crosssectional, ideally following groups of players throughout their careers. Grey (pictured ) is also hopeful that new research aimed at developing new tests for concussion will lead to greater player safety in future. “Researchers around the world are looking at blood and urine tests and I think we are going to make some headway soon. One thing we’re working on is a breathalyser which could potentially detect concussion. “Concussion causes brain chemicals known as metabolites, to change. If they get into the blood, as we believe they do, they should then transmit into the lungs and into the breath. So we should be able to detect them. We are working on this now but its use in the game could be a few years down the line.” In terms of better protecting grassroots footballers from concussion, Grey says: “We need better tests that are inexpensive and can be rolled out to every football club across the world. We need a physiological test. Tests which rely on the compliance of the person involved don’t always work because players often just want to get back onto the pitch. In some cases they don’t even realise there is a problem. There are no pain centres in the brain so it is difficult to detect.”
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TECHNOLOGY
ENGINEERING THE JOURNEY TO INNER SPACE
Brain computer interfaces have been aiding neuro-rehab for years but have so much more to offer in the decades ahead. NR Times meets the pioneers of neural engineering and asks ‘where next?’
A
30-something who hasn’t walked
Former world class violinist Rosemary Johnson,
thanks to brain computer interfaces (BCIs).
since she was a teenager ignores the
meanwhile, spent 27 years after a car crash
Yet for all the remarkable feats of BCI pioneers,
noise around her in a busy Sao Paulo
coming to terms with the end of her orchestral
frustration lingers in their labs and test
clinic. Instead she’s engrossed in the window of
days. But earlier this year she was making music
facilities. On paper and white boards they have
pixelated light strapped over her eyes. In this
once more, despite the head injury sustained in
mapped out the endless possibilities of BCIs
dimension she not only sees the world
1988 which stole her of speech and movement.
for people with brain and spinal injuries. Yet in
standing up, but even plays football. The brain
By focusing on lights on a computer screen,
reality, technology has some way to go before
training device, through which she controls an
she was able to control the composition and
their ideas can be fully realised.
avatar, eventually helps to restore the feeling
delivery of music as it was performed by live
As American technologist Phillip Alveda
in her legs and take a major step on her
musicians. These stories are among many
put it recently: “Today’s best brain-computer
rehabilitation journey.
neuro-rehab breakthroughs made this year
interface systems are like two supercomputers
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TECHNOLOGY
trying to talk to each other using an old
or increasing circle as a gauge of how
“For example, we could substitute an
300-baud modem.”
close they are to the right area. It’s a way of
area of the brain that has been damaged. Not
This comes from a figure on the cutting edge
remapping the brain.”
necessarily with tissue but something that is a
of BCI development. Alveda manages the
Progress continues in all three areas, but
mixture of electronic and biological material.”
neural engineering system design programme
the big tipping point in BCI’s development will
The challenge facing BCI innovators is summed
within the US defense department as part of
be mastery of implanted technology,
up by Sepulveda’s analogy of "a coin in jelly".
President Obama’s BRAIN initiative to
says Sepulveda.
“Everything we’ve tried on the brain so far has
advance neuroscience.
“Using external devices will continue,
been harder than brain tissue.
Francisco Sepulveda, a leading BCI light in the
but the future will be implanted. Instead
"Imagine putting a coin in jelly and the damage
UK, is also hindered by the current limitations
of having all these gadgets outside,
it does as it moves around.
of the technology available to him and
we will be rewiring inside.
"This is the challenge we face.
his peers. He co-founded one of the largest and most well-funded campus-based BCI labs in the country 10 years ago and remains an integral part of the University of Essex’s groundbreaking BCI work. “Technology is taking a little longer than everyone expected to have a broader impact,” he says. “The really good devices, rather than what are basically toys used in the mainstream, are still relatively expensive, with the cheapest ones being around £10,000. “Also, because the technology is very much at the trial and error stage and fairly exploratory, it can take a long time to get results. They require individuals to take part in a constant and prolonged regime of activity. Interrupting studies can send them back to zero; the adaptability of the brain may have changed after a period of time. So users may become frustrated and disappointed and it can be difficult to encourage people to come back again and again.” BCI studies can generally be separated into three categories. Some trials encourage individuals to use the injured part of their brain to control a device or virtual object. Others enable users to control electrical impulses which can in turn stimulate movement in their limbs. A third category is largely feedback based, as Sepulveda explains: “We can monitor brain signals and show them to the user in a way they understand. If someone is trying to move their leg without any electrical stimulation, we can train a person to hit the motor control area of the brain and stay there, perhaps using a bar
BCI developer Francisco Sepulveda
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TECHNOLOGY
Nastaran Hashemi of Iowa State University
Shockwaves created by blows to the head create microbubbles that collapse
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"There are people working with conductive
pumped through tiny channels to create
polymers which could read or relay signals
microfibres that are flexible, biocompatible and
from parts of the brain. At the moment they
bio-degradeable. Neural stem cells are then
are not as soft as we would like them, they are
attached to the microfibre scaffold.
very expensive and they don’t generate the
Researcher Nastaran Hashemi says: “We are
kind of electrical behavior that would allow any
interested in understanding how shockwaves
meaningful functionality.
created by blows to the head create
“In the longer term we need to get closer to
microbubbles that collapse near the nerve cells,
biological tissue. It could mean synthetic
or neurons in the brain, and damage them.”
neurons, perhaps creating cells of neurons
Though she believes it could be “five or ten
combining biological and electronic elements.
years” before we see this method transferred
Nanotechnology will help to advance this but
from the lab to hospitals and clinics.
obviously it’s not something that's going to
“Our hope is to gain a better understanding of
happen any time soon. I think we could begin
mild TBI which doesn’t often show immediate
non-human testing within ten years.”
effects but can cause differences over time,”
The development of internal components that
she says.
could improve neuro-rehab is already moving at
Another recent breakthrough is the use of a
pace. In October this year Iowa State University
BCI system to restore feeling in the arms and
announced a breakthrough in developing
fingers of a paralysed man. Researchers at the
microfibres which could eventually repair the
University of Pittsburgh and its associated
damage caused by traumatic brain injury (TBI).
medical centre UPMC enabled Nathan Copeland
Researchers have created a new way to design
to feel a sense of touch via a mind-controlled
and fabricate microfibres that support cell
robotic hand. Key components in the study
growth by providing ‘scaffolding’. A method
were tiny microelectrode arrays implanted on
called ‘microfluidic fabrication’ sees the
the brain where the neurons that control hand
biodegradable polyester Polycaprolactone
movement and touch are located.
TECHNOLOGY
The longer term possibilities of internal
of Wisconsin–Madison. One of its creations is a
His firm works with the US government’s
components for BCIs are vast. Although it has
system of tiny, stretchable integrated circuits
Defense Advanced Research Projects Agency
only been trialled in rats to date, ‘neural dust’
just 0.025 mm thick and combining high-
(DARPA) in developing fields such as neural
shows great promise. Wireless electrodes no
frequency transistors.
engineering. The group is reportedly working on
bigger than a speck of dust can be affixed to
The university has also developed transparent
an implanted ‘interface’ the size of a coin that
nerves – and potentially the brain – to record
brain sensors made from graphene, a material
would allow users to control computers
signals and wirelessly transmit the information.
that is 200 times stronger than steel and a
with thoughts.
The University of California-born technology is
million times thinner than a human hair. Such
He told delegates at a San Francisco
powered by a transducer in the lab which sends
advancements will hopefully accelerate the
conference: “When you look at 1G being for
out ultrasound vibrations which are able to
capacity of BCIs to help people with brain and
voice, for your ears. And 3G to 5G as data for
pass through the animal’s body.
spinal injuries in future.
your eyes; a vision service. Perhaps 6G will go
‘Piezoelectric’ crystal in the neural dust
So too might those studies focused on
beyond the head mounted displays to introduce
converts the mechanical energy of the
communications technology.
direct neural interface.”
vibrations into electricity. Its signals are also
Matt Grob, chief technology officer of
Given that even 5G isn’t expected to launch
sent using ultrasound.
multinational mobile tech giant Qualcomm,
until at least 2020, Grob is clearly looking
Other pioneering implanted technologies
spoke recently about how the sixth
far beyond the horizon. But such predictions
include the range of transparent, thin and
generation of mobile networks (6G) could
are certainly encouraging for neuro-rehab
stretchy marvels coming out of the University
revolutionise neuroscience.
professionals.
Neural stem cells on a microfibre scaffold
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INTERVIEW
There was no screening for pituitary problems and we were never informed of the risks
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INTERVIEW
TRAGEDY, TRAUMA AND A MENTAL HEALTH COVER-UP
children, but is perhaps lesser known as a cause
Personal tragedy set Joanna Lane on a mission to improve the diagnosis and treatment of hypopituitarism after traumatic brain injury. In the eight years since her son’s suicide, her influence has been felt far and wide; but there’s much more to be done, she tells Andrew Mernin
three days. The stress got too much for him,
A
of depression and impotence; both of which affected Chris. Joanna says: “When we went through his things we found letters from his ex-girlfriend which clearly implied they hadn’t managed to have sex. I called her and found out they’d never managed it in the four years they were together. He’d never been able to get an erection but had refused to seek help. “There were also bouts of depression. When he was doing his A-Levels and we were nagging him to revise he got mad and disappeared for which may have been a sign of a deficiency in the hormones which control stress. There were two similar occasions, including one when he suddenly left his job and drove up to Edinburgh with the intention of committing suicide. That was three years before he died. We made a swift appointment with a psychiatrist and he was only offered counselling. We weren’t told about the tripled risk of suicide after head injury.
knock on the door one sunny afternoon
fractures and spent a week in a coma. But
“I don’t think he ever told anyone about
in 2008 changed Joanna Lane’s
undetected by doctors was the damage to his
his impotence and his condition was never
life forever. It was the police with
pituitary gland that would eventually cause
investigated further. I guess this was a
shattering news. Her son, 31-year-old Chris,
devastating problems in later life.
missed opportunity.
had taken his own life. He was a “lovely boy”
“After his fall there was no screening for
“Remembering his head injury as a child, my
who loved tinkering on his piano, listening
pituitary problems and we were never informed
sister and I then found a wealth of research
to Dido and hanging out with mum. He was
of the long-term risks. As we left hospital,
linking damage to the pituitary gland with
considerate too – so much so that even in
a nurse did say in passing that his pituitary
impotence and depression.”
his final despairing hours, he was thinking of
gland could be damaged, but when he grew up
others. He sent pre-scheduled emails to alert
normally afterwards we stopped worrying.”
the police and left his door unlocked so they
As Chris got older, signs that Joanna now
could find his body.
knows can be attributed to post-traumatic
His death devastated his family, friends and
hypopituitarism (PTHP), emerged.
Skipton Building Society colleagues. It was also
It wasn’t until she put the jigsaw pieces of her
the start of his mother’s fight to expose what
son’s life together in the aftermath of his death,
she believes has been a decades-long mental
that his silent suffering with the condition
health cover-up.
became clear. Hypopituitarism is the failure of
Eight years on, her endeavours have helped to
the pituitary gland to adequately produce one
bring the issue of hypopituitarism after brain
or more hormones.
injury to the fore, forcing healthcare decision-
While no conclusive figure exists, most studies
makers in various fields to rethink their
suggest around a third of people after traumatic
approach to the condition.
brain injury (TBI) have at least temporary
Chris sustained a head injury when he fell
dysfunction of the pituitary gland.
out of a tree at age seven. He suffered skull
It is well known as a cause of dwarfism in
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INTERVIEW
So began Joanna’s campaign to bring more attention to what appeared to be a worryingly underdiagnosed condition. It started with a scatter-gun approach, targeting media, politicians, health authorities and charities. Results soon followed, including
People have fought through that diagnosis but their lives have been written off
changes to various official patient websites that
three chance of getting it. “When people receive a letter from the hospital about head injury, why can’t there be a warning about PTHP?” In fact, one Devonshire hospital has already changed its discharge letter to include PTHP, while various online NHS patient resources have
were previously devoid of information about
also been updated. Joanna even managed to get
PTHP. “At the time, the research was there but
of head injured patients taking place within the
her message out to millions of TV viewers during
there was nothing at all about it on clinical
NHS, but not routinely or universally.
Saturday night prime-time.
knowledge portals used by GPs or NHS staff,”
Joanna believes there could be as many as a
Series 13 episode one of hospital drama Holby
says Joanna.
million undiagnosed hypopituitarism cases in
City featured a case of PTHP, thanks to a helpful
A lack of awareness and the infrequency of
the UK. She bases this estimate on two major
tip from a screenwriter at a literature festival.
screening for PTHP means misdiagnosis levels
studies. The Schneider review evidenced an
Other breakthroughs include the Army’s decision
are high.
annual incidence of 30 hypopituitarism cases
to start screening soldiers for hypopituitarism -
“People don’t know what PTHP is and often
for every 100,000 people and another, by
possibly prompted by Joanna's correspondence
they are told they’ve got ME or chronic fatigue
Fernandez Rodriguez et al, claimed this figure
with them.
syndrome and are left to flounder without any
to be 50 per 100,000. These equate respectively
The military showed unexpected humanity, she
proper treatment other than counselling or
to 18,000 and 30,000 cases in the UK each year.
says, where other state-backed organisations
therapy. Almost all of the many people that
Extrapolating an average out over what Joanna
ignored and suppressed her views.
contacted me have had to fight through that type
calls “four decades of neglect” gives a
She wrote to Lt Col John Etherington at Headley
of diagnosis until they’ve been given the correct
six-figure statistic.
Court rehab centre and, over a year later, he
one. So their lives have been written off.”
“It’s a conspiracy to deny more than a million
responded. He said the Army was aware of these
Diagnosis of hypopituitarism has more than
Britons a proper life. Hypopituitarism is life-
potential complications and that her concerns
doubled since 2008, and there are screenings
wrecking and a head injury gives you a one in
would be passed on to the neuro-rehab team.
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INTERVIEW
I felt so angry to be treated like a little person that could be squashed by a big powerful organisation She later discovered that a military hospital in
evidence of infarction of the pituitary. Infarction
The organisation was unable to tell us about
Surrey was screening all head injury patients
is cell death due to lack of blood supply. This was
any plans to change them in the future, when
routinely for PTHP. “I then learned that this
reinforced in 2007 by data which showed that
contacted by NR Times. In the meantime, Joanna
practice had been extended to the Queen
there was no sign of infarction in 12 patients who
hopes her new book Mother of a Suicide: Fighting
Elizabeth Hospital in Birmingham, which is the
died at the scene of TBI, but in 43% of patients
for the Truth will raise awareness of PTHP and
first port of call for the wounded.
who died within the first seven days, and who
encourage healthcare authorities to do more to
"This information meant I could ask why
were studied at post-mortem.
recognise and screen for the condition.
soldiers were screened while civilians weren’t
“Our own data has shown that 30% of patients
“I felt so angry to be treated like a little person
even warned.”
studied at 7-14 days post TBI have evidence of
that could be squashed by a big powerful
A bigger challenge in Joanna’s fight for
subnormal pituitary function and more recently,
organisation like NICE so I thought I’d write a
change came when she took on the might of
a more comprehensive daily assessment of
book giving the evidence so that people could
the National Institute for Health and Care
100 patients with TBI showed that 80% had
make up their own minds.
Excellence (NICE). She argued that PTHP should
subnormal cortisol levels at some state during
“The words just flowed out when I was writing
be included in NICE’s head injury guidelines.
hospital admission.”
about Chris, but the other stuff about my fight
NICE said the guidelines covered acute stage
Despite her efforts, and support from experts
to change the system, was a lot harder, trawling
only, and that hypopituitarism takes months to
like Chris Thompson, Joanna hit a brick wall as
through several years worth of emails
develop, so therefore had no place in
her bid for legal aid to support the case
and research.”
the guidance.
was rejected.
Given her relentless work over the last eight
Joanna was backed up by significant evidence
The legal aid agency said in a letter: “From the
years in highlighting the hidden threat of
of hypopituitary problems in the immediate
information provided, hypopituitarism is not
hypopituitarism, she certainly had plenty of
aftermath of TBI. As pituitary specialist Chris
something which is diagnosable within the early
source material for her book.
Thompson, professor of endocrinology at
stages of a head injury and as such I cannot see
If buoyant early sales are anything to go by, it
Beaumont Hospital, Dublin, wrote in an email to
that it falls within the remit of this guidance.”
may well have the desired effect and help more
her in 2014: “It has been known since 1969 that
That was two years ago and NICE’s guidelines
people in future avoid the tragedy that befell
35% of patients surviving 12 hours after TBI have
have not changed since.
Chris Lane and his family.
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INTERVIEW
Hypopituitarism in focus It is roughly estimated that a third of people after traumatic brain injury have at least temporary dysfunction of the pituitary gland. Often this lasts beyond the acute phase and will be a serious, but treatable, cause of unnecessary further disability.
T
he pituitary gland lies at the base of the brain and is connected to the brain by a small stalk with direct neural links to the hypothalamus. It is vulnerable and can be easily damaged in brain injury. It is divided into two parts the anterior lobe and the posterior lobe. The anterior lobe is responsible for the production of growth hormone (GH), luteinising hormone (LH), follicle stimulating hormone (FSH), adrenocorticotropic hormone (ACTH), thyroid stimulating hormone (TSH) and prolactin. Regulation of these hormones is largely under the control of the hypothalamus. The posterior pituitary gland produces
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NRTIMES
arginine vasopressin (AVP) which has a key role in maintaining fluid balance in the body. It also produces oxytocin which stimulates uterine contraction during birth and ejection of milk during lactation. Growth hormone deficiency causes growth failure or slowing of growth in children. In adults it can cause decreased energy, increased fat and reduced muscle mass. Concerns should be raised if a child is beginning to show slowed growth after a TBI. In adults growth hormone deficiency can be easily overlooked as the symptoms of decreased energy and tiredness and increased weight are very common in any case after brain injury.
HORMONES FSH-LH – Deficiency in the production of these hormones can cause problems with the menstrual cycle, loss of libido, hot flushes, dyspareunia (pain during sexual intercourse) and infertility in women. In men it is often associated with loss of libido, impaired sexual function as well as mood impairment, loss of facial, scrotal or trunk hair and decrease in muscle bulk and easy fatigue. Once again these are problems that are quite common after brain injury and diagnosis is not always obvious. ACTH - Chronic ACTH deficiency is also associated with fatigue, anorexia, weight loss and sometimes other metabolic complications such as low sodium and sugar levels. In children it can present with delayed puberty and failure to thrive. In more severe cases ACTH deficiency can be associated with vascular collapse, particularly during superimposed illness. TSH is the hormone that stimulates the thyroid gland to produce thyroxine. Individuals with TSH deficiency show the symptoms of hypothyroidism. These symptoms can include tiredness, coldness, constipation, hair loss, dry skin, hoarseness, general lethargy including slowing of ‘cognition’, weight gain and low blood pressure. Prolactin - Fortunately there is no clinical syndrome that is known to be associated with prolactin deficiency.
INTERVIEW
TESTING / TREATMENT In terms of anterior pituitary function, individuals should be referred to a local endocrine department if there are concerns about pituitary function. Simple blood tests of the hormones are not usually adequate as the pituitary gland needs to be ‘dynamically’ tested. Provocative tests stimulate hormone release either indirectly (by, for example, injecting a small dose of insulin) or directly by injecting synthetically manufactured peptides (synacthen). Other tests are possible such as a glucagon stimulation test or an oral glucose tolerance test. This is clearly a specialist area and it is important to emphasise that simply taking blood to measure the hormones is not adequate. Treatment for all the above conditions is simply by the administration of the appropriate hormones and thus it is important to recognise pituitary function as some, if not all, of the unpleasant symptoms can be readily alleviated. In terms of posterior pituitary function, AVP deficiency leads to
cranial diabetes insipidus which is not to be confused with a ‘sugar’ diabetes mellitus. This condition causes the passage of large volumes of dilute urine (often more than three litres per day). This can obviously lead to dehydration and severe thirst. It is a disorder well recognised and quite common in the acute phase of TBI but can extend for many months or years after the injury. Diagnosis is usually quite straightforward by measuring urine osmolality before and after administration of the AVP analogue called desmopressin. However endocrine referral is generally needed for diagnosis and long-term follow up. The treatment is usually straightforward and is by administration of desmopressin. There is no known role for oxytocin production in men but in woman oxytocin is probably necessary for the regulation of lactation and birth and reproductive behaviour but relatively little seems to be known about the effect of lack of production.
SCREENING Ideally everyone after a TBI should have pituitary function screening but this is unlikely to happen and indeed has serious resource implications for the NHS. The problem is that many of the symptoms of pituitary dysfunction overlap with symptoms that are common in any case after TBI. Fatigue is a particular example. This is extremely common after brain injury but also very common in pituitary dysfunction. At the moment there are no clear guidelines. Pituitary dysfunction is more common after severe brain injury and after basal skull fracture so perhaps those people should be screened. Those who develop diabetes insipidus in the acute phase should also be followed up and screened.
Information provided by the UK Acquired Brain Injury Forum (UKABIF).
Everyone after TBI should have pituitary screening but this is unlikely to happen
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INSIGHT
ILLEGAL GAINS MAKING THE CASE FOR CANNABIS IN REHAB
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INSIGHT
Cross-party MPs called for cannabis to be legalised for medicinal purposes earlier this year. This followed an inquiry, involving hundreds of patients and professionals, into the drug’s potential value in treating various conditions. A review was overseen and authored by consultant neurologist Professor Mike Barnes. Here he explains the relevance of the findings to neuro-rehab. What about the risk of schizophrenia associated with cannabis use? 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. 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 important to remember that most people who use cannabis do not develop schizophrenia, and most people with schizophrenia Mike Barnes
NRT: What are the headline findings from the report for people working with brain and spinal injury clients? MB: There is now good evidence to show that cannabis, including the non-psychoactive component CBD, can help to treat chronic pain – such as that experienced post spinal or brain injury – spasticity, nausea and vomiting and anxiety. We also found moderate evidence that it helps to stimulate appetite, which may also be relevant to neuro-rehab units. There was limited evidence to support cannabis’s role in alleviating depression and in brain protection in the context of traumatic brain injury.
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. What impact does cannabis have on chronic pain? Current treatment for severe chronic pain is often effective but can be associated with serious side effects. Opioids, for example, carry very serious risks, including mortality. Chronic pain is one of the leading reasons for medical use of cannabis in the UK. It is known that the endocannabinoid system is one of the key bodily systems that regulate pain sensation with actions at all stages of the pain processing pathway. Neural signalling through
ONLINE:: Read the full cannabis report at nrtimes.co.uk
both CB1 and CB2 receptors has a key role in normal pain processing and considerable animal model and pre-clinical data on both patients and healthy volunteers confirm that modulation of the endocannabinoid system can reduce pain. 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. We concluded that there is good evidence for efficacy of cannabis for pain relief in various formulations and in a number of settings. Could cannabis play a greater role in the management of spasticity after spinal and brain injuries? 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. We consider there is good evidence of safety in the long-term and for continued efficacy. We also consider there is moderate evidence for the efficacy of oral cannabis extract for reducing patient-reported spasticity scores. There is insufficient evidence to make any recommendations with regard to other forms of cannabis. One study we considered assessed the effect of nabilone on spasticity after spinal cord injury (Pooyania et al 2010). The research involved 11 subjects who either received nabilone or a placebo during a four-week period and after a two-week washout, subjects were crossed to the opposite arm of the study. There was a significant decrease on active treatment for the Ashworth score in the most involved muscle as well as the total Ashworth score. There were no significant differences in secondary measures which included the spasm frequency scale and the clinician’s and subject’s global impression of change. Side effects were mild and tolerable.
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31
INSIGHT
Anxiety is particularly prevalent with people coming to terms with severe injuries. Could they benefit from cannabis? Cannabis can both increase and decrease anxiety in humans. CBD has been shown to reduce anxiety whereas THC, the psychoactive part of the drug, usually has the converse effect. Overall, we consider there is good evidence for CBD use in anxiety. This evidence base includes a doubleblind, randomised, placebo-controlled 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. A further study carried out by Crippa and colleagues (2011) looked at the effect of CBD on anxiety and the brain mechanisms involved. This double-blind, randomized, placebo-controlled study found that CBD significantly decreased anxiety and that this was related to its effects on the limbic and paralimbic brain areas. Improved anxiety levels have also been reported in patients suffering from chronic neuropathic pain (Ware et al 2010b). What conclusions did you draw about cannabis and epilepsy? There is certainly 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. So there is only limited evidence currently. In which other areas related to neuro-rehab would you like to see more studies carried out in future? 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. There is no
Power plant: Cannabis can decrease anxiety
evidence to support neuroprotection in stroke and, in fact, limited evidence shows that heavy recreational users have a slightly increased risk of stroke. So further clarity in these two areas could be hugely beneficial to neuro-rehab professionals. It was also surprising to discover that, despite a long history of cannabis use in headache and migraine, there are no good quality randomised clinical trials. I would like to see more studies into neuropathic headaches in particular. What regulatory hurdles are stopping people benefitting from the medicinal properties of cannabis? We currently have a shambolic situation in which the very recognition of cannabis as a medicine has potentially delayed its obtainability by people who really need it by several years. Until October this year, CBD was legal to purchase in the UK. Then
It's only a matter of time before the UK government legalises cannabis for medicinal purposes 32
NRTIMES
the MHRA [Medicines and Health Care Products Regulatory Agency], which is sponsored by the Department of Health, said it now recognises that CBD could potentially have medicinal value and should be considered a medicine. This is dependent, however, on manufacturers providing proof of its efficacy. Therefore, individuals, including young children with resistant epilepsy, may not be able to legally obtain CBD in the near future. They won’t be able to until the producers can satisfy the regulations for medicinal products, which will take some years. Is this situation likely to be resolved anytime soon? It’s only a matter of time before the UK government legalises cannabis for medical purposes as we are so far behind the rest of the world now. Several more American states have just voted to legalise it there, while it is also now legal in at least 10 European countries. We are way behind on this and conflicted because of this nonsense with the rescheduling of CBD.
INTERVIEW
WHERE DOES
an ABI in the UK really so unimportant?
REHABILITATION
enough money on rehabilitation, and the loss
GO FROM HERE? Colonel John Etherington OBE tells Louise Blakeborough about the demise of his post as national clinical director for rehabilitation and recovering in the community – and the challenges ahead for rehabilitation services.
“No reason was given for the demise of the post,” says Etherington. “We don’t spend of the NCD post means that there’s nobody that can argue that need at a high level. The NHS as a whole doesn’t focus on rehabilitation, or consider it to be an important part of the healthcare we deliver – we are constantly trying to transform how people think of rehabilitation. Rehabilitation is everyone’s business and all health professionals need to understand that it’s important – but that’s a huge challenge.” As NCD for rehabilitation and recovering in the community, Etherington, together with Suzanne Rastrick, chief allied health professions officer, co-chaired the NHS England Rehabilitation
I
Delivery Board. The board set out its two key n April 2013, in the midst of widespread
and gives it prominence; however, rehabilitation
priorities as; 1) rehabilitation to enable people
changes in the NHS, NHS England announced
consistently fails to gain or maintain that
to remain in or return to work and meaningful
a large number of national clinical director
prominence. Specialist rehabilitation services
activity, and 2) rehabilitation to improve
(NCD) posts, including the appointment of
play a vital role in the management of people
the quality of life for people with long-term
Dr Etherington as NCD for rehabilitation and
admitted to hospital with an ABI by taking
conditions. There were several key working
recovering in the community. Etherington,
them after their immediate medical and
groups established including those covering
who currently serves as director of defence
surgical needs have been met, maximising
commissioning guidance and rehabilitation for
rehabilitation and a consultant in rheumatology
their recovery and then supporting their
economic growth.
and rehabilitation medicine at the Defence
rehabilitation needs in the community.
The Commissioning Guidance Working
Medical Rehabilitation Centre based at Headley
Are the one million individuals who live with
Group launched ‘Commissioning Guidance
Court, Surrey, says: “The NCDs were a group of impressive characters but initially the NHS didn’t know how best to use them, and the NCDs weren’t sure the extent of their remit. It all took a while to settle.” Some NCDs were responsible for conditions, whereas Etherington’s post was for a process which made it challenging as it cut across boundaries. Three years later, following an extensive amount of work in many areas, the NCD posts were reviewed and streamlined as part of the NHS ‘Five Year Forward Review’. The number of NCD posts were reduced and Etherington’s role was scrapped. Once again, rehabilitation was relegated to the lower league. The role of the NCD in NHS England is to provide leadership for a particular condition area, drive forward improvements and champion the condition widely within NHS England. Having an NCD post assigned demonstrates that the area is seen as a priority
Colonel John Etherington
NRTIMES 33
INTERVIEW
Puzzling approach: Rehab funding is too short-term, says Etherington
Rehab must 'shout louder' as a profession
for Rehabilitation’, a document intended for
interest politicians in a subject that they would
to get rehabilitation up the agenda and to get
use by clinical commissioning groups (CCGs)
otherwise not engage in by presenting the
the resources we need to get the job done.
and their local partners to support them in
economic argument. Rehabilitation needed to
I thought we were nearly there, but sadly
commissioning rehabilitation services for
be re-aligned so it could stand alongside cancer
we weren’t”.
their local population.
and heart disease, and the way to do this is to
Other projects included commissioning the
The guidance sets out “what good looks like”
convince the budget holders.”
‘Improving Rehabilitation Services Community
from the perspective of patients and their
In the past, rehabilitation was accused of not
of Practice (IRSCOP)’. The Community of
families, and how rehabilitation offers local
having an evidence-base; this is no longer the
Practice was provided by the NHS Clinical Soft
solutions. It also advocates a ‘person-centred
case with extensive clinical and economic
Intelligence Service (NHSCSI) and hosted on
approach’ to deliver rehabilitation services
research demonstrating solid outcomes. The
NHS Networks. It was an independent platform
that take account of individual circumstances,
Rehabilitation for Economic Growth Working
and forum for discussion and debate for all
preferences and needs. This interactive tool
Group produced a comprehensive economic
those concerned with improving rehabilitation
was initially developed following the report
report in 2015 for the NHS Executive Group,
services. This online resource remains open to
produced in 2014 entitled ‘Principles and
scoping out the idea of using cross-government
anyone, but since August this year the site has
Expectations for Good Adult Rehabilitation’,
funding to support rehabilitation in the UK.
no longer been moderated or added to by
describing what good rehabilitation is and
The consequences of brain injury impact not
the NHSCSI.
offering a national consensus on what service
only on the healthcare budget but across many
Four regional rehabilitation leads were also
users should expect from services. The take-
sectors including employment, tax revenue
appointed to focus on the adoption and
up of services is expected to be monitored by
and disability benefits. Etherington’s report
dissemination of good practice and to support
equality data and reported annually or as agreed
detailed the costs of rehabilitation but also
the development of local networks and
by service providers. “This was an extensive
documented the long-term financial benefits
initiatives. These posts no longer exist.
piece of work and the feedback has been
to other governmental budgets such as local
Looking ahead, the diversity of rehabilitation
generally positive,” Etherington says. On the
government, Department for Work and
makes planning and service provision
basis that the costs of brain injury are too high
Pensions (DWP), Department for Education
challenging and complex. However, Etherington
to be ignored and the consequences too serious
(DfE) and Social Services. Unfortunately
maintains that the cost-benefit argument
to be neglected, the focus of the Rehabilitation
the report did not get the required support,
for rehabilitation is the way to engage all
for Economic Growth Working Group was to
says Etherington. “If the NHS invests in
stakeholders: “Long-term, with or without
drive messages about the financial benefits
rehabilitation then the DWP, the DfE and even
rehabilitation, our patients impact on many
of rehabilitation. “We ultimately wanted to
the Ministry of Justice will all benefit. I needed
government departments. I firmly believe
34
NRTIMES
INTERVIEW
'Radical thinking' needed to get rehab up the agenda
that in order to make a difference you need to be talking about the economic implications at a senior governmental level. For example the Trauma Audit and Research Network (TARN) data is a proving to be a useful tool to demonstrate the direct costs of trauma in terms of benefit claims and is proving to be of interest to the DWP.” With regard to commissioning, the commissioners need to better understand the scale of rehabilitation need. However, rehabilitation will continue to be largely uninteresting for GPs; they do not understand how it helps them and the CCG has no data set for it. Etherington believes that until GPs have to collect data on ABI they will never show any interest in it. “Are we commissioning care properly? No I don’t think we are. Why are we allowing commissioners to get away with funding just three months of rehabilitation? We have the evidence-base to demonstrate duration is important for outcomes – why don’t we press them for more funding? Fundamentally we haven’t got the commissioning structure right – it’s complicated for specialised services and you have to question if the money follows patient need.” The instigation of the so-called ‘rehabilitation prescription’, that follows the patient from acute care into the community seems to present an opportunity to link specific rehabilitation and trauma care to the needs of patients. The
uncomplicated template that can communicate
He says: “There is a need to recognise that
across the care pathway."
there is a financial burden to not funding
Specialised services commissioned by
rehabilitation.”
NHS England are grouped into six National
He believes there is a need to look at more
Programmes of Care (NPoC), of which
radical ways of funding rehabilitation such as
trauma is one and includes traumatic injury,
co-commissioning with various collaborations
orthopaedics, head and neck and rehabilitation.
currently looking at different business
The function of the Clinical Reference Group
models. “Radical thinking is required,” he says.
(CRG) for the Trauma NPoC is to provide clinical
“Rehabilitation is not, and never has been, a
mandate for change, and the development of a
advice and leadership. Etherington is hopeful
priority. It isn’t visible, patients can’t shout
rehabilitation prescription is driven by the AHPs,
that the CRG can take a fresh look at the status
loudly, the charities are small and generally
as they are the group that will use it. However,
of rehabilitation and provide sound innovative
we’re all not vocal enough about rehabilitation.
Etherington cautions: “We don’t want umpteen
advice to NHS England on the best way that
We somehow need to shout louder and make it
different versions. We need a standardised,
these specialised services should be provided.
a priority.”
Rehabilitation has never been a priority. It isn't visible...We're not vocal enough about it
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INSIGHT
36
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INSIGHT
STREET BATTLE Hidden on the margins of society is an army of undetected, misdiagnosed and badly managed brain injury cases. Andrew Mernin reports on the search for solutions for the one in two homeless people with a history of head trauma.
H
alf of all homeless people may have had a traumatic brain injury (TBI) at some point in their lives, research suggests. Studies in the UK and North America over the last decade
have found levels of past TBI experiences among homeless people to generally range between around 45 and 55%. Research also suggests the vast majority of TBIs happened before homelessness occurred (90% in one study in Leeds in 2012). Such stark figures prompt serious questions about the way brain injuries cases are diagnosed and handled. With homelessness having risen sharply in recent years – by 55% in England alone between 2010 and 2015 – there is also a pressing need to better address the many TBI cases out of reach of the vital interventions they may need. Closing the road from brain injury to homelessness requires work from every angle, including healthcare, social services and politics. Getting the many homeless people with a past brain injury off the streets and receiving adequate care requires a similarly all-encompassing approach. A solution to this escalating, labyrinthine challenge may well be taking shape in the West Midlands, thanks to a small band of pioneers.
NRTIMES
37
INSIGHT
THERE'S A NEED TO EDUCATE THE AGENCIES quo con evenWORKING WITH THE HOMELESS
“We’re not suggesting what we're doing
at all, we'll signpost them to other services.
agencies which work with the homeless,
needs to be rolled out as it’s too premature
“We don’t necessarily think everyone’s
such as social services and the voluntary
for that,” says Dr Andrew Worthington, a
problems are all down to the brain injury, but
sector, to recognise amongst all the other
neuropsychologist who runs Birmingham-
it’s important to have a point of reference
problems, signs of head injury. Although an
based rehabilitation group Headwise. “We
where they can be properly assessed and
individual may be drunk, for example, have
are giving an example of one model and we’re
provided with support. Previously they might
they got behavioural difficulties because of
going to evaluate its impact.”
have been given a leaflet and left to get on
a previous head injury? We’ve also got to
Headwise has joined forces with the charity
with it, with nobody following them up.
give them some options for services to
Headway Birmingham and Solihull to employ a
We’re providing a dedicated case worker
refer on to.
‘homelessness caseworker’ to assess the needs
who’ll work with them.”
“What’s at the heart of this, and the reason
of homeless brain injured people and help
The main research element of the scheme is to
why the government and local authorities
them move their lives forward.
compare the results between people accessing
have struggled to deal with it, is the fact
The post, funded by Headwise and based at
this new model and those receiving the usual
that it cuts across boundaries.
Headway, is part of a wider research project by
standard of care.
“Homeless individuals can have multiple
the partnership to explore links between brain
“It’s very early days but hopefully we’ll have
problems, one of which may seem more
injury and homelessness.
some evidence as to what works and will be
urgent than others at different times.
At the time of writing, the scheme is nearing
able to develop a model that can be tweaked
Any service that comes into contact
the first six-monthly follow up with homeless
and may be rolled out elsewhere.It’s only the
with homeless people, whether that be a
people and Worthington is hopeful of some
last 10 years or so that we’ve become aware
shelter, dentist or GP, needs to be aware of
meaningful data.
of the problem of homelessness and brain
what specialist services are available.
“We’re primarily doing an intervention study.
injury so we’re still trying to work out the
Currently there is a problem in trying to
The idea is to provide a support and
scale of the problem.”
provide joined-up services. If everyone is
signposting service for people with a brain
Solutions which emerge in the future to
focusing only on their area, no-one is looking
injury. When the needs of an individual are
stop TBI acting as a catalyst for
at the bigger picture.”
related to a brain injury we will provide that
homelessness will need to address several
A homeless person living out of reach of
support. Where they just happen to have a
major challenges; including the disjointed
regular contact with local services might
brain injury, but their primary needs may be
nature of services which come into
reappear on the radar with a trip to A and E.
drug or alcohol abuse, domestic violence or
contact with vulnerable people.
In this pressured environment, with the
simply that they have nowhere to sleep
“There’s a broader need to educate the
immediate health of the individual taking
38
NRTIMES
INSIGHT
priority over anything else, previous brain
most urgent need rather than tracing the
homeless and need the service can't
injuries often go undetected.
reasons for their homelessness.
access them.”
“They may have been assaulted or be drunk.
Finding that person a place to live is effectively
Preventing homelessness among people
Understandably the pressing problem is dealt
treating their symptoms with a “sticking
with brain injuries, rather than getting them
with and they are discharged. Rather than
plaster”, says Worthington.
off the streets and on the road to recovery,
getting to the root of the problem, they may go
Even if past head injuries are identified,
presents an entirely different challenge.
back to the streets. So we have this revolving
getting someone at risk of homelessness to
“It's quite likely that individuals who have
door syndrome.
partake in rehabilitation and engage in brain
had head injuries as children or adolescents
“Often it's difficult to know how to help,
injury services can be hugely challenging.
may be at a greater risk of being homeless in
because the problems can be very complex
“They might move out of the area and, if they
later life, although there is no evidence of
and usually hospital staff aren't aware of
don't turn up for an appointment, a lot of
this yet.
the specialist services available for
services won't bother to enquire why.
“They might not develop normally, their
homeless people.
“Also, they often have certain problems with
education may be interrupted and they
"On the other side of the coin, homeless
mental health and substance abuse disorders
may not acquire the skills that adults to
services are often unable to identify the
which then makes it difficult for them to
a certain degree might have. If it can't be
relevant medical problems.”
meet the criteria to be helped by brain
addressed early on or isn't addressed
Furthermore, if the police or social services
injury services.
quickly enough then this changes their
come into contact with a homeless person,
"Some brain injury services have exclusion
trajectory for the rest of their life.”
they may also deal with the individual’s
criteria which means that many people who are
There is an argument that some people
UK homelessness has soared in recent years
NRTIMES 39
INSIGHT
who are considered risk-takers might be
them access the relevant support.
criminals have been handled over the
susceptible to both homelessness and head
We need a network of services for people
last decade.
injuries – rather than one being a result of
that are homeless.
What was once a suspected link between
the other.
"Currently in hospitals, if they haven't got a
brain injury and criminal activity, now has
“Certain antisocial behavioural activities could
discharge destination, they are either kicked
a vast weight of evidence behind it.
have caused them to be on the streets, such as
onto the streets or kept in for longer than
With as many as 60% of prisoners reporting
drug-taking, which could have also contributed
they need to be, ultimately blocking beds.
a head injury, according to one study on
to a brain injury.
"There needs to be a service to which these
male inmates, the issue has infiltrated
"What we do know quite clearly is that having
individuals must be referred.
politics and is beginning to influence
a brain injury massively increases any existing
"We can find them temporary accommodation
decisions and discussions about the future
problems you might already have.”
and get the assessments done and refer them
of the justice system.
While the Headwise/Headway project remains
on to other services to give them the support
In October, for example, the House of
at an early stage, there are examples of
they need."
Commons justice select committee
successful models that are already improving
Before that ideal is realised, support in
mentioned the increased risk among young
the way homeless people with head injuries
tackling the issue is needed from many
offenders of head injury in its report on why
are treated.
sources, including charities – especially
the under-25s should be kept out of
Worthington cites the PIE (psychologically
against the backdrop of austerity measures.
adult prisons.
informed environment) system as one
“The third sector is going to play a critical
In contrast, a parliamentary report published
approach to learn from.
role in this.
in the same month related to the
“The idea is to provide an environment,
"NHS budgets are so stretched and are skewed
Homelessness Reduction Bill 2016/17 made
perhaps in an accommodation setting, that
towards acute services. Social services budgets
no mention of TBI among its list of the causes
meets the person’s needs for shelter but also
are also stretched.
of homelessness.
their psychological and emotional needs too.
“It would help if we could make social services
In fact, there was no mention of head or brain
“These have been known to reduce offending
more informed.
injury anywhere in the document.
behavior among homeless people with
"But ultimately they are not going to have
"A few years ago we were in the same position
mental health issues and could have possible
the resources to address these complex needs,
with brain injury and criminal activity and now
implications to help people with brain injuries."
so I think a lot of responsibility is going to fall
we have a much better understanding of it.
Worthington’s long-term vision is for a system
on charities.”
"So I think in 10 year’s time that's where we'll
that helps, not hinders, homeless people with
If charities are to take on this burden, they
be with homelessness and brain injury.
brain injuries.
will need considerable support.
It's taking a while and we remain at a very
“In North America they have collaborative
“Often a charity might lack medical
early stage.
models of care that cut across boundaries.
expertise. What’s innovative in our model
"But we've made a good start."
We’ve struggled with that here because
is that we’ve got a partnership between
everyone has their own ring-fenced budgets,”
my professional, medical organisation and
he says.
Headway, the charity.
“We need a coordinated system that will pick
"The future needs to be collaborative and it’s
people up after discharge from hospital, which
going to be incumbent on the charities
is staffed by people with knowledge of head
to develop or access professional support.”
injury who are able to undertake assessments
For now, Worthington takes optimism from
of their social and health needs and then help
the way in which brain injuries among
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Dr Andrew Worthington
INSIGHT
48 O O
TBI and homelessness: The evidence A 2012 study by the Disabilities Trust found that 48 of the 100 homeless people it questioned in Leeds had experienced a head injury. Of those, 90% suffered the injury before they became homeless. The 48% figure was more than double the proportion of head injuries reported by those in a comparator control group of non-homeless people. Another Disabilities Trust study, in Glasgow, used hospital records of admission to assess the city’s homeless population. It found that the frequency of admission to hospital with head injury among the homeless was five times higher than that of the city’s general population. In Toronto in 2004/05, 601 men and 303 women at homeless shelters and meal programmes were surveyed. Overall, 53% had experienced a TBI, with 12% reporting a moderate or severe TBI. In this study 70% of respondents sustained their injury before they were homeless. In 2014, researchers at St Michael’s Hospital in Toronto surveyed 111 homeless men and found that 45% of them had suffered at least one TBI in their life, and 87% of those injuries occurred before they were homeless. Among the general population, TBI rates are estimated to be 12%, according to a 2013 meta-analysis of studies from developed countries.
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CONDITION
CONDITION UPDATE:: MND Every quarter we report on the latest challenges and developments surrounding a specific condition. This issue, Ammar Al-Chalabi, professor of neurology and complex disease genetics and director of King’s MND Care and Research Centre, focuses on motor neurone disease.
MND expert: Ammar Al-Chalabi 42
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CONDITION
Motor neurone disease (MND) is a fatal, rapidly progressing disease that affects the brain and spinal cord. It attacks the nerves that control movement so muscles no longer work. It does not affect the senses but can leave people locked in a failing body, unable to move, talk and eventually breathe. Some people may experience changes in thinking and behaviour, with a proportion experiencing a rare form of dementia. Currently it is incurable.
The search for a treatment The underlying aim among researchers is to understand the causes of MND. If we can work out why it happens, we might be able to find a treatment. We’re also looking into why it progresses more rapidly in some people than others. This may lead to a treatment which is able to at least slow its progression down. A lot of our research is genetics-based and there are quite a few studies which give us optimism in the search for a cure. These studies are helping us to better understand the mechanism of MND and therefore increasing our chances of being able to treat it at some point in the future. Outlook for people with MND MND kills a third of people within a year and more than half within two years of diagnosis. An estimated one in 300 will die of the disease. Over the last decade we’ve found survival rates have improved slightly, but this is measured in weeks and months rather than years, so it is barely noticeable. Care provision Strong multidisciplinary teams are shown to improve outcomes. In practice, this means care is managed by neurologists in conjunction with palliative care specialists, physiotherapists, dieticians, wheelchair therapists, clinical nurse specialists, care coordinators, respiratory
Researchers aim to find causes of MND
consultants and occupational and speech and language therapists. In our team at King’s we also involve a volunteer who has had first-hand experience of MND through a family member or loved one. This is important because they understand what the patients are facing in a different way from healthcare professionals. Interventions In the last 15 years we’ve started intervening more quickly with non-invasive ventilation. Previously, if someone had respiratory failure, we would give a treatment to stop them feeling distressed about being breathless but it was not straightforward to offer any practical solution to the breathing difficulty, and so they would die soon after. Now we are able to use a portable machine that can support breathing and take away breathlessness by putting air into their lungs. This relieves their symptoms for an extended period and gives a better quality of life for longer. There is some evidence that it may even prolong survival. We also now intervene more quickly with nutritional support. There is a lot of research going on currently into whether this needs to be a specific type, such as a high-calorie diet, for example. Hopefully we will get a greater understanding of the impact of diet on the condition in the coming years. MND and the brain We are now recognising that in up to 30% of people there is some involvement of thinking. MND can
Several types of therapy are emerging
affect word finding and impact on personality in quite subtle ways; often by making people more stubborn. As a result, patients may interact with relatives differently and may also reject healthcare options. Emerging therapies There is a lot of exploration going on into gene therapy. Although only about 5% of people have a family history of MND, there is probably a genetic component to the condition in everyone. By affecting the genetics, we may be able to slow the disease down. Other strategies include trying to improve strength regardless of affecting the underlying disease. Increasingly we are seeing new drug treatments designed to make muscle contractions stronger. Another approach being looked into is immune therapy. There is some evidence that inflammation might influence the disease's progression. If you can affect the immune system, we might be able to change the course of the disease. MND and NHS cutbacks MND is an extremely distressing condition and you need time to be able to deal with all the multiple problems that patients face. When people are given the diagnosis it is a life-changing and usually very distressing experience. There are many time pressures on people in the NHS. So we have competing demands and it can be challenging to spend enough time with our patients to support them through this difficult situation.
NRTIMES 43
CONDITION
Charities provide vital funds for research 44
CONDITION
MND fundraisers on the Great North Run
Perceptions and awareness of MND change depending where you are in the world
Support for MND causes continues to grow
Funding challenges Although the risk of developing MND is about the same as that of developing multiple sclerosis in the UK, MND affects life expectancy, so it is not as common. It is therefore perceived as a rare disease and it can be difficult to get funding for vital research. In the UK we’re fortunate to have the support of the Motor Neurone Disease Association, which is extremely effective and supportive of patients. Crucially, it also funds a lot of our research into MND. Clinical trials Generally patients are extremely motivated to take part in research. Sometimes families can be reluctant to agree to get involved if there may be a genetic basis to their family’s condition, as that can have significant implications for them. Raising public awareness Perceptions and awareness of MND change depending on where you are in the world. In the UK, public awareness was very low but improved a lot with the Ice Bucket Challenge. The problem with this viral social media campaign however, was that it referred to ALS rather than MND. A lot of people in the UK didn’t realise it was the same condition and donated funds to charities in the US.
NRTIMES 45
LEGAL
THE NHS MUST STOP PROVIDING A SOFT LANDING FOR INSURERS ...argues Jill Greenfield
A
s NHS commissioners increasingly struggle to balance the books, many would be dismayed to learn that, when
their hospitals treat accident victims, they're often unwittingly cushioning the costs of the insurance industry. The NHS provides world-class emergency care. But, particularly when victims of road traffic accidents and accidents at work suffer severe neurological injury, the cost of moving patients on and providing long-term inpatient and outpatient rehabilitation is beyond NHS resources. This is precisely when defendant insurers should step in and pay for appropriate private care, but many drag their feet, preferring to keep a patient within the NHS, receiving cheaper but not necessarily appropriate care. Since the foundation of the NHS in 1946, there's always been debate about whether the
Many are dragging their feet to keep a patient within the NHS receiving cheaper care 46
NRTIMES
health service should fund victims of accidents
right place for a patient at a certain time.
where insurers are involved. Section 2(4) of the
But injured victims are pressurised to accept
Law Reform (Personal Injury) Act 1948 states
local authority funding and NHS care with
that everyone may seek NHS care but accident
defendant insurers providing a "top up",
victims can elect to have their care paid for
rather than paying the full amount for private
privately. Currently, in these cases, defendant
care. There is no reason for this. Top ups are
insurers pay back some of the treatment costs
only relevant where there are significant
to the government via the Compensation
issues on liability and significant discounts
Recovery Unit.
for the claimant's own negligence in relation
But because of imposed tariffs, these
to an accident.
payments are significantly lower than the
I currently have two clients who were hit
real costs, meaning insurers only pay a
by cars and suffered serious brain injury.
small percentage while the NHS bears
One, Neil, initially received excellent
the brunt. The NHS is often the
emergency care in a London hospital.
LEGAL
What he needed next was to be in a rehabilitation
private neurologist/rehabilitation expert.
unit, but there were no beds available. He ended
Clearly, recovery was going to be a long process,
up on an extremely busy general ward where his
but my client – a mother of two - proved to have
behaviour deteriorated and he was in danger of
real potential. I wanted to do everything possible
being sectioned.
for her. The defendant insurers refused to engage
I intervened early and demanded interim funding
under the Rehabilitation Code, but I negotiated
from the insurer to get private carers onto the
interim payments to pay for private care in a
ward to work with Neil. They sat with him 24 hours
neurological unit, including therapies and support
a day, helping him deal with his frustrations and
workers. Remarkably, this woman can now
ensuring treatment progressed at his pace.
communicate, sit up in bed, have a discussion,
His initial assessment on the general ward
laugh and smile in such a way that encourages
deemed him too volatile to benefit from the
her team to continue their good work. If her legal
rehabilitation unit and was leading to the
team had bowed to pressure from the defendant
possibility of a locked unit. Assessment after
insurers in those early days, she would likely now
the carers had calmed the situation down proved
be sitting in a care home, with no support.
far more positive and he was accepted
We simply would not accept that she had been
for rehabilitation.
written off. This is why we take on these cases, and we have to be tough. Some defendant insurers accept that
The defendant insurers pressured me to agree as they wanted the CCG to fund the care
in cases of severe brain injury, rehabilitation can recover some happiness and appreciate the need to improve quality of life, others see only figures. The cynical view is that, unless you can get someone back to work, what's the point? A care regime can cost in excess of ÂŁ100,000 per year and CCGs simply cannot afford to deal with the volume of cases and understandably feel that
He is now back in the community, living in a
the money would be better spent elsewhere.
flat and while he still requires major support
Case managers are under increasing pressure
from support workers and therapists, he has a
from insurers to accept CCG funding and NHS
sense of his own identity. We achieved this via
care. Most of them understand the principle that
the Rehabilitation Code, by which both claimants'
the client's family can elect on their client's behalf
solicitors and defendant insurers/solicitors must
for private care, but occasionally I have to remind
agree to consider early what rehabilitation they
them and defendant insurers that clients have the
are prepared to pay for.
right to get what they need, rather than what is
Defendant insurers hold the purse strings here
available via the various streams of public money.
and it is up to the claimant's solicitors to ensure
One of the rehabilitation therapies we push
that fund is accessed for clients and, where
for is horse riding, which can bring incredible
necessary, to push for the right private care that a
results. I had a brain-injured client who loved it.
patient desperately needs.
Unfortunately, the minute he got off the horse,
My other client was already on a rehabilitation
he forgot he'd been on it. The defendant insurer
ward when I met her. The NHS hospital suggested
argued that paying for horse riding therefore had
that she should go from there to a care home
no long-term benefit. I refused to accept that
because there was little hope of improvement.
and, 20 years on, my client is still riding his horse.
The defendant insurers strongly pressured me to agree since they wanted the local CCG to fund
Jill Greenfield is head of catastrophic
the care home. Being stubborn, I involved a case
injury claims and a partner at the law
manager early and arranged an assessment by a
firm, Fieldfisher.
NRTIMES 47
CLINICAL PRACTICE
RT A SM
S E V O M
48
NRTIMES
CLINICAL PRACTICE
An assessment tool which has shaped the way we uncover signs of awareness in prolonged disorders of consciousness is changing. One of its founding pioneers, Karen Elliott, tells NR Times what to expect from SMART mark three ahead of its launch in 2017.
A
new version of the SMART diagnostic system for prolonged disorders of consciousness (PDOC) patients is due to be released in 2017. It draws from new research and Royal College of Physicians (RCP) 2013 guidelines - and aims to further improve the search for awareness in possible vegetative and minimal consciousness state cases. SMART detects awareness and functional and communicative capacity where there have been no consistent or reliable responses elicited; and where the individual’s potential function has yet to be fully explored. It comprises 10 behavioural observation sessions within a one to three-week period, followed by a treatment phase where indicated. It is one of three PDOC assessment tools recommended by the RCP alongside CRS-R and WHIM and is the most detailed and lengthy. Karen Elliott’s groundbreaking work from 1987 developing a sensory stimulation programme at the UK’s first brain injury unit at the Royal Hospital for Neuro-Disability, laid the foundations for SMART. Like her fellow SMART pioneers Ros Munday and Helen Gill-Thwaites – with whom she now runs a PDOC-focused consultancy – Dr Elliott has spent decades in establishing and improving SMART and spreading the use of the system nationally and globally. She took time out of her work on SMART version three to tell NR Times about the future of the system and the wider outlook for PDOC assessment.
NRTIMES 49
CLINICAL PRACTICE
NRT: What changes can neuro-rehab professionals expect in SMART version three? KE: We’ve factored in the latest research and RCP guidelines and gathered opinion from clinicians and accredited assessors across the country. We want to make sure SMART is relevant in whatever context it is used. Although already in use by some assessors, a key change is the inclusion of behavioural formal observations. When a family or team member identifies a response, perhaps in a type of therapy, we will now observe that particular session ourselves as part of our assessment. Why is that an important addition? SMART is the only recommended tool that includes the viewpoint of the patient’s family and we already interview them about responses and in what situations they see them. We’ve found that it can be quite difficult from somebody’s description of a response to identify whether it’s something purposeful that we could intervene on or whether it could be a reflex response. We’ve introduced the observation so that we can actually see the response for ourselves. We visit them when they are at their most awake, which may be in the evening or morning, in whatever setting they are in, including the family home. You’re already doing this as part of the assessment – has it made a difference so far? We’ve had cases where the formal part of the assessment hasn’t identified functioning or it is unverified. The RCP guidelines identify that you need to be able to reproduce responses in order to be able to diagnose minimal consciousness state. In some cases we’ve been able to identify over 10 sessions that patients are responding to family members, which has identified that the person is minimally conscious rather than vegetative. This in turn has had a significant impact on the resources and funding available to them. 50
NRTIMES
If the information isn't really robust, there's the potential to misdiagnose people
PDOC cases seem more exposed to the threat of misdiagnosis than most others according to various studies. Most recently, in 2015, neurosurgeons at the University of Western Ontario found that a fifth of patients diagnosed as being in a persistent vegetative state showed responsive brain activity via a brain scan. Older studies put the misdiagnosis rate as high as 43%. What’s going wrong? The only way to assess PDOC is through behaviours; researchers are looking at MRI scanning but it’s not yet a practical way of identifying responses. So it’s very complex
with a lot of variables. This is why we believe in 10 assessments over a period of time. One assessment may not give a true picture of awareness levels. Another factor is that people carrying out assessments may not be adequately skilled in PDOC. There are now new SMART standards for assessors to make sure assessments are always carried out to the right level and standard. Every accredited assessor now has to maintain and demonstrate their skills and pass an accreditation every four years which shows they’re keeping up with what’s happening in PDOC. They’ve always been accredited but we’re being more defined about it.
CLINICAL PRACTICE
Does the patient’s environment also have a big impact on the accuracy of PDOCrelated assessments? It can certainly influence responses. We always consider the things around the patient and how they might impact the way they respond. It could be something simple, like whether they are positioned in their wheelchair so that they are able to make good eye contact, or could potentially do so. Also, are they positioned so that they could use their arms if they had that ability? Is their spasticity managed so they could respond if they were able to? So it’s about trying to eliminate anything that might mask a response. Other considerations include their drugs regime, nutrition, orthotics they may be wearing and whether they are having regular rest periods.
Critics of SMART say it is a needlessly long and expensive process, especially if you factor in the accreditation needed to carry it out. What do you say to those doubters? The accreditation is a strength of SMART as there is still a significant level of misdiagnosis around. The RCP guidelines identify that you must have people who know what they are doing to deliver an adequate assessment. Similarly, the fact that the process takes several days is also a strength for the patient. If the information you’re getting about your patient isn’t really robust, there is the potential to misdiagnose them. We want people to choose the most appropriate assessment for the patient, rather over its time or financial cost.
Also, if we’re not sure that SMART is right for a patient, we can provide a current status assessment in one day to establish whether they would benefit from a full assessment. Having spent the last 30 years improving PDOC assessments and treatment, what keeps you up at night when you consider the future in this field? I think there is a major challenge in terms of finding long-term placements for PDOC patients where staff have skills over and above nursing care that can provide a suitable environment. This is especially the case for younger PDOC patients. I also think it is vital that assessments are adequately carried out in cases where an application has been made for withdrawal of nutrition and hydration.
NRTIMES
51
THERAPY
G N I K I R ST
M
A
D R O Soaring demand for music H C therapy in neuro-rehab is likely to intensify in the New Year, as evidence for its results continues to build. NR Times reports.
usic therapy’s rising stock in neuro-
people with stroke.
separate Cochrane report on music therapy
rehab promises to hit new heights
Julian O’Kelly, an honorary research fellow in
and depression similarly said that, while music
in 2017.
music therapy at the Royal Hospital of Neuro-
therapy is associated with improvements in
A major new review, due imminently, is
Disability, explains the method: “The music
mood, high quality trials were needed to be
expected to show further hard evidence of the
therapist may encourage their client to walk to
confident about its effectiveness.
measurable impact of the practice on brain
the downbeat rhythm of a guitar, engaging with
The new Cochrane report on music
injury clients.
our natural tendency to coordinate movement
interventions for ABI has been expanded
The Cochrane body, which provides systematic
to rhythm.
with many new studies included and reports
reviews for healthcare by expertly scrutinising
"This can be done with other actions, such as a
on a greater number of behavioural domains
global evidence, is returning to a topic it last
stretching exercise – perhaps reaching up as you
beyond gait. It also now includes studies on
visited in 2010. That this most authoritative
would to open a cupboard.”
music interventions as well as those on
source of evidence for healthcare interventions
Alongside RAS, the Cochrane review referenced
music therapy.
focused on music therapy and acquired brain
other methods and encouraging studies linked
Such validation is exactly what music
injury (ABI) six years ago was a big step forward
to upper extremity function, speech, agitation
therapy needs, says O’Kelly, who
for the profession in itself.
and cognitive orientation. But many trials failed
specialises in working with brain injury
Back then the review concluded that the music
to meet Cochrane’s strict data inclusion rules,
clients amongst others.
therapy method, rhythmic auditory stimulation
prompting it to call for more robust studies
“Music therapy has really come on in leaps
(RAS), may be beneficial for gait improvement in
in relation to various outcomes in future. A
and bounds in the last 10 years and we
52
NRTIMES
THERAPY
This is the first time the NHS has invested significantly in music therapy research, which is a good sign... now have Cochrane reviews on music
their youth. A series of clips, since viewed by
ability to control their sound environment.
therapy and its use with people with autism,
millions of people online, showed otherwise
Input from a music therapist is advisable with
dementia, mental illness as well as brain injury.”
detached, incoherent care home residents
recorded music programmes to avoid taking
More unequivocal proof of the impact
suddenly singing and dancing with gusto.
people on emotional rollercoasters they might
of music therapy looks likely, with
Long-lost memories came flooding back as
be defenceless against,” he says.
further investment promised by UK
they listened to the soundtrack of their
But like Alive Inside, the case of Gabby Giffords
health authorities.
formative years.
in America has also shown the YouTube
The National Institute for Health Research
Such methods come with a note of caution
generation the power of music on the brain.
(NIHR) recently awarded £200,000 in funds
from O’Kelly, however. “The use of recorded
Congresswoman Giffords was famously shot in
to support a global trial on autism and
music in an unsupervised way could actually
2011, taking a bullet to the brain which left her in
music therapy led by Anglia Ruskin University.
be dangerous for those with Alzheimer’s and
a critical condition. With her language pathways
O’Kelly, meanwhile, is involved in an
other conditions who lack a healthy person’s
damaged, words had left her – until a music
NHS-funded trial on music therapy and chronic depression. “This is the first time the NHS has invested significantly in music therapy research, which is a good sign,” he says. “Music therapy needs this injection of cash to continue developing its growing evidence base.” Music therapy’s ability to help the brain rewire and reorganise itself is manifested in an array of different approaches. One of the clearest examples of music’s link to neuroplasticity is melodic intonation therapy, which combines singing of everyday phrases with rhythmic activity to ‘hijack’ the brain's natural affinity for linking rhythm, speech and melody. When scientists at Harvard explored the effects of this technique with neuro-imaging technology, they discovered important changes in the size and strength of brain circuitry linking areas crucial for speech. As music therapy becomes more accepted in neuro-rehab and wider healthcare circles, demand will undoubtedly grow among families and loved ones of brain injury clients. The profession’s public profile is certainly greater now than it has ever been – thanks in part to mainstream TV and film coverage of the amazing things music does to the brain. The 2014 documentary Alive Inside shared with the world the dramatic impact of enabling people with Alzheimer’s to listen to songs from
NRTIMES 53
THERAPY
This man who couldn't finish a sentence was suddenly able to sing the whole song word for word
therapist intervened and gave them back to her, using melody and rhythm. The world watched in awe as a seemingly lost cause battled back from the brink, with music therapy at the heart of her recovery. Although keen to underline the “evidencebased, clinical” value of music therapy, O’Kelly has his own inspiring moments which highlight music’s seemingly otherworldly power to heal and transform. “I had one amazing experience with a man with a profound speech difficulty, or aphasia, which meant his words came out, but in the wrong order, as a result of a brain tumour. I knew he was a West Ham FC fan so I sat down at the piano and started to play their song, ‘I’m Forever
that we can’t harness or measure. But that’s
responses. When it’s difficult to define whether
Blowing Bubbles’. This man who couldn’t finish
wrong. You can measure the effect on an EEG.
someone is aware or not, music has the ability
a sentence was suddenly able to sing the whole
You can use technology to measure the change
to change brain pattern, respiration and
song word for word.
in people’s moods; you can pinpoint changes
heart rate.”
“It was transformative because it gave him
and quantify the effect of music. An EEG can
Several characteristics of music make it
confidence and hope and made him more
show how music therapy has changed the way a
applicable to neuro-rehab, says O’Kelly.
receptive to speech therapy. It had a profound
patient’s brain is wired.”
“Emotionally, it makes us want to move and
effect on both of us.”
O’Kelly, who has been in music therapy since
sing and it brings back memories. It’s like
There are no doubt many more such stories
1998 after training at the University of Bristol,
a workout for the brain – and there is an
among the UK’s population of around 1,000
currently helps people with severe brain
inclination to do it again and again. When
registered music therapists. But, as O’Kelly
injuries, as well as other conditions.
someone learns an instrument there is clear
points out, the profession must move away from
“Often after a serious car crash or major stroke,
evidence of neuroplasticity.
a misconception that music therapy is some
it can be very hard to differentiate between a
“If you put these factors into the context of
intangible, albeit powerful, entity.
vegetative and conscious state. This is where
a brain injury, whether its affecting speech,
“If the profession is to develop it really needs to
the emotional power of music therapy really
movement or mood, music is bound to support
continue doing evidence-based research. There’s
comes into its own because it doesn’t require
neuroplasticity.”
a tendency to think music is this nebulous thing
word processing. We can still elicit emotional
Links between music and improved cognitive
54
NRTIMES
THERAPY
A profession in high demand The inclusion of music therapy in neuro-rehab is on the increase, reports Catherine Watkins, director of Attune Music Therapy. “Music therapy providers are increasingly receiving enquiries from brain injury case managers and other professionals working with brain injury survivors,” she says. “We’re also seeing more demand directly from private neuro-rehab care providers’ units.” She has also witnessed a shift in the way music therapy is being relied upon within neuro-rehab settings. Catherine Watkins, Attune “Music therapy in the past may have been provided on an ad hoc basis to neuro-rehab facilities but this is changing as more and more recognise the evidence behind our work and the results we can deliver with some of the most complex and hard-to-reach clients.” Watkins, whose company works with people of all ages with a range of disabilities and challenges, believes attitudes towards music therapy are also changing. “Music therapy is definitely moving higher up the agenda within neuro-rehab but more education is needed about the many benefits our profession brings. There can be a misconception that music therapy is merely a form of entertainment or just a fun activity for clients. It is only when you start talking to people about both psychological and functional rehabilitation that they start to understand the difference. “Music therapy is an HCPC-regulated profession. Music therapists are not only highly skilled musicians but are trained clinicians who understand and work with a full range of disabilities as part of multi-disciplinary teams. Its influence within the neuro-rehab arena is only going to continue to grow and generate more interest as the science of music and the brain evolves and professionals and the public both hear and see more of what we can offer.”
function are well evidenced. One stand-out
Results showed that recovery in the domains of
individual’s mood,” explains O'Kelly.
study by Dr Teppo Särkämö in 2008 aimed to
verbal memory and focused attention improved
Anecdotally, he says music therapists are
determine whether everyday music listening
significantly more in the music group than in
becoming evermore frequent visitors to brain
could facilitate the recovery of cognitive
the language and control groups. The music
injury units, working closely with their fellow
functions and mood after stroke. In the acute
group also experienced less depressed and
healthcare professionals. “They are able
recovery phase, 60 patients with a left or right
confused mood than the control group. What’s
to converse with occupational therapists,
hemisphere middle cerebral artery (MCA)
more, neuroimaging of the participants showed
doctors and nurses, and understand clinical
stroke were randomly assigned to a music,
clear signs of neuroplasticity supporting these
observations. They’ll work closely with other
language or control group. During the following
improvements for the music group in the form
professionals in many ways. For example,
two months, the music and language groups
of changes in brain structures.
we could be carrying out our work, while a
listened daily to self-selected music or audio
In the neuro-rehab world, music therapy is
doctor observes the client’s reactions
books, respectively, while the control group
increasingly being used to help tackle brain
and responses. We can also set homework
received no listening material. All patients
injury-related depression.
exercises and teach carers or family members
underwent an extensive neuropsychological
“Depression often goes hand in hand with brain
how to practice them. There are also more ways
assessment, including a wide range of cognitive
injury. Studies have shown that improvising with
to access music therapy now, with charities and
tests as well as mood and quality of life
trained music therapists and talking about the
private organisations providing services that
questionnaires at various stages.
moods the music evokes can improve an
were traditionally offered by the NHS.”
ONLINE:: Find this article online at nrtimes.co.uk for links to the latest Cochrane review on music therapy and acquired brain injury.
55
EVENTS
Dates for your diary
2
DEC 16 / 13:
8
Northern Acquired Brain Injury Forum (NABIF) meeting, Miners Hall, Flass Street, Durham, DH1 4BE. Contact PaulBrown@thompsons. law.co.uk or 0191 269 0600
14
Using humanising lifeworld approaches in stroke services to support wellbeing for service users and providers. Clinical psychology research seminar series winter term 2016 with Dr Caroline EllisHill Faculty of Health and Social Sciences, Humanisation SIG, Bournemouth University. Contact: f.gracey@uea.ac.uk.
16
Headway Annual Awards 2016, The Dorchester Hotel, London. Details available on www.headway.org.uk.
56
NRTIMES
JAN 17 / 23 - 27:
SMART (Sensory Modality Assessment and Rehabilitation Technique) assessor course. Royal Hospital for Neuro-disability, London, 9am – 5pm. Cost £785. Contact: 020 8780 4500 ext 5140 or institute@rhn.org.uk.
26
Acquired Brain Injury for Social Workers workshop, Irwin Mitchell Solicitors, London EC1N 2PZ, time TBA. Contact: Chloe Hayward on 07501 483989 or via info@biswg.co.uk.
FEB 17 / 1-4
International Neuropsychological Society Annual Meeting, New Orleans, USA. Full details available via www.the-ins.org.
Acquired Brain Injury for Social Workers workshop, BASW HQ, Birmingham, B5 6RD. Contact: Chloe Hayward on 07501 483989 or via info@biswg.co.uk.
Annual head injury study day delivered by the Derby and Nottingham TBI teams, Royal Derby Hospital, time TBA. Contact: 01332 254679 or dhft.ncore@nhs.net, See www.ncore.org.uk for more details.
9
Beyond brain injury: Overcoming everyday challenges. American Express Community Stadium, Brighton, 9am – 5pm. Contact: events@asb-aspire.com.
9
Tricky issues – ‘Life of P’. Seminar hosted by the British Association of Brain injury Case Managers (BABICM) covering the complexities and challenges encountered during postsettlement. St Pancras Renaissance Hotel, London. Contact: secretary@babicm.org or call 0161 764 0602.
EVENTS
10
Peer reviews – what to expect. Webinar hosted by the British Association of Brain injury Case Managers (BABICM). 11am. Contact: secretary@babicm.org or call 0161 764 0602.
16 - 18
Masterclass on the Management of Bladder, Bowel & Sexual dysfunction in Spinal Cord Injury and Neural Tube Defects. Treviso-Milan, Italy. Contact: traceymole@wfnr.co.uk.
22
What’s the point of DOLS? Beyond Cheshire West. Exchange Chambers, Deansgate, Manchester, 9am – 4.15pm. Find this event on ukabif.org.uk for booking details.
22
Caring with Confidence – a study day for professionals involved in the personal care of people with spinal cord injury. MKCC, Strudwick Drive, Milton Keynes, MK6 2TG, 9am – 4pm. Contact: academy@spinal.co.uk or 01908 604 191.
23
Acquired Brain Injury for Social Workers workshop, Irwin Mitchell Solicitors, Manchester, M3 4AW, time TBA. Contact: Chloe Hayward on 07501 483989 or via info@biswg.co.uk.
27
Sussex Acquired Brain Injury Forum (SABIF) meet/talk. Venue in Brighton TBC, 4pm – 6pm. Contact: Katie.Russell@asb-aspire.com.
MAR 17 / 9 - 11
Abu Dhabi Pelvic Floor Weekend. Abu Dhabi, UAE. Contact: mario.patricolo@gmail. com. Full details available via www.adpfw-2017.com.
16
Brain injury – practical dilemmas collaboration from critical care to the community. Novotel Southampton, 1 West Quay, Southampton, SO15 1RA, 9am – 4.30pm. Contact: maddison.peters@ irwinmitchell.com.
23
World Congress on Controversies in Neurology (CONy). Athens, Greece. Full details available via www.comtecmed.com/cony
29
12th World Congress on Brain Injury. New Orleans, USA. Full details available at www.ibia2017.org.
Please send details of your event to editor@aspectpublishing.co.uk. Please check with contacts beforehand that arrangements haven’t changed. Events organisers are also asked to notify us at the above address of any changes or cancellations.
NRTIMES
57
CLOCKING OFF
Making a stand? ‘Corporate wellness’ has spread from Silicon Valley into just about every sector in recent years – and is predicted to grow further in 2017. Various employer trend forecasts, including that published by Forbes Magazine, believe bosses will spend more on making staff fitter and happier in the year ahead. One way of doing this, say analysts, is the stand-up desk. Sitting down, they say, is like smoking in the 50s – in other words a threat to our health that we’re all in denial about. Most healthcare professionals spend a lot of time on their feet anyway –
Child trust's important Christmas message
benefit from greater energy levels
Trust tweet leaves advertising giants for dust
30 years and counting
and an ever-so-slightly thinner
The battle for the Christmas pound has been as fierce as ever in
Given how tough survival in
waistband, if studies are to be
TV Land this year. Sainsbury’s, John Lewis, M&S and friends have
the third sector can be,
believed. Here’s to a healthy
all pulled out their various stops to get us spending as much as
congratulations must go to the
New Year, whether you’re sitting
possible. Forget Buster the Boxer and James Corden’s time-starved
team at the Brain and Spinal
or standing.
Sainsbury’s dad, however. Our favourite festive message comes
Injury Centre (BASIC) in Salford.
from the Child Brain Injury Trust, which promoted its Christmas
Its now 30 years since Bolton
fundraising drive with a simple tweet: “If people would just take
businessman Derek Gaskell was
the time to listen to someone who has a brain injury and not judge
inspired to form a charity after
them by what they see, life would be a lot better.” The charity helps
his wife’s life-saving brain surgery
families deal with the impact of a brain injury. At Christmas, the
left her unable to do anything
isolation they often feel can intensify when all around them are
for herself. Find out more about
supposedly having a most wonderful time. To donate, find the trust
BASIC’s work at
on www.justgiving.com.
www.basiccharity.org.uk.
but if you are thinking of ditching the swivel chair in 2017, you may
Sitting down is like smoking in the 50s. We're all in denial about it
Brain books provide new perspectives
neuroscientist Susan Greenfield, provides
brings us The Left Brain Speaks, but the
empirically-based insights into consciousness
Right Brain Laughs; an insightful and
as she traces the brain in a single day.
amusing take on how the brain works.
For many professionals engrossed on a daily
From waking to walking the dog, working
It's aimed at people of any scientific level, so
basis in neuro-rehab, their wonderment over
to dreaming, Greenfield explores how our
won’t feel like extra-curricular homework.
the brain’s amazing capacity may have faded.
daily experiences are translated into a
It might also be a good recommendation for
If that’s you, two new books from the
tangle of cells, molecules and chemical
clients and families. It introduces neuroscience
mainstream, which remind readers of the
blips, thereby probing the enduring
and explains how things like creativity, skill,
true power of grey matter, might be worth
mystery of how our brains create our
and even perception of self can grow and
checking out.
individual selves.
change via the brain. Both books are available
A Day in the Life of the Brain, by acclaimed
Physicist Ransom Stephens, meanwhile,
on Amazon.co.uk.
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TIMES WHAT A GOOD IDEA Thinking of advertising in NR Times? We distribute to every leader and senior healthcare staff member at every brain injury unit and private and NHS neuro-rehab facility in the country. We also reach every UK brain injury case manager, as well as senior rehabilitation doctors and nurses working independently and within the NHS; plus CCGs, NHS trusts and specialist care homes, amongst others.
COMING SOON...
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