NR
ISSUE 2 Spring 17
NEURO REHAB
SEX GUIDE Managing your patients' most intimate problems
TIMES
MURDER HUNT The net closes in on the neurone killer ONE PUNCH Fighting back against a violent epidemic
In association with
LOCKED OUT THE BRAIN INJURED KIDS WRITTEN OFF AT SCHOOL
MAGIC MOMENT How pioneering approach is transforming young lives
REFUGEE CRISIS Brain injuries soar on the dangerous road to Europe
TECH BOOST MPs switched on to the need for change
National Neurological Rehabilitation Chambers is the UK’s only specialist Chambers run by neurological rehabilitation professionals.
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WELCOME
EDITOR'S NOTE
Welcome to the Spring ’17 issue of NR Times, bringing together the many professions working with brain and spinal injury clients in the UK.
In this post-truth age of fake news and the ever-widening chasm between left and right medias, the true state of the NHS is difficult to pin down. Is its future in grave danger, or will the government’s ‘sustainability and transformation plans’ save it? Will it really be swallowed up by the private sector in coming years? Can its workforce – and the many non-UK nationals within it – survive Brexit? And what of neuro-rehab? Professionals working with neurological conditions, either in the NHS or on behalf of its clients in the private sector, face a lot of uncertainty. The noise generated by Whitehall mudslingers, newspapers and social media offers little clarity about the future. In search of unbiased answers and hard evidence, we’ve stripped back the very latest facts about neuro-rehab and the direction in which it is heading. Our data reveals a sector built on relatively stable ground but with several underlying challenges. See pages 6&7 for more. The scandal of brain injuries in the criminal justice system, meanwhile, looks to be finally getting at least some of the attention it deserves. This quarter we report on two very different approaches being taken to stop a disproportionate amount of the brain injured falling into the potential abyss of prison. We also join a world-leading scientist on the trail of a deadly, malevolent force in the brain and spinal cord. Stopping it won’t be
easy, but doing so could save millions of lives from the ravages of neurodegenerative diseases. As our interview reveals, he’s getting ever-closer to catching the mysterious agent, A1. In this issue, you’ll also find updates on how new technologies and therapies are extending the limitations of neuro-rehab as well as analysis on emerging challenges and how they are being outsmarted. Before our next edition, NR Times is planning a busy few months of neuro-rehab exhibitions, seminars and conferences. If you see someone juggling notes, coffee and a dictaphone, that’ll probably be me. Please come over and say hello. I’d be delighted to hear about your experiences in neuro-rehab and the issues that matter to you. Andrew Mernin andrew@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
24
COVER STORY
NEWS The latest from the world of neuro-rehab
The brain injured kids written off at school
32
06
18
MAKING LIMITATIONS DISAPPEAR Why magic therapy is no cheap trick
ON THE TRAIL OF THE NEURONE KILLER Net closes in on deadly force
38
ONE PUNCH IS ALL IT TAKES Fighting back against a violent epidemic 04
NRTIMES
42
SEX AND RELATIONSHIPS Clinical guide to intimate problems
CONTENTS
48
CRISIS WITHIN A CRISIS Brain injuries on the long road to Europe
56
CONDITION UPDATE: MS Treatments, challenges and breakthroughs
52
TECH BOOST Campaign for change goes right to the top
60
EVENTS Dates for your diary in the months ahead
62
CLOCKING OFF
With a surfing hero and a Buddhist monk NRTIMES 05
Males remain twice as likely as females to acquire a brain injury
H
ospital admissions with a diagnosis of acquired brain injury (ABI)
have soared by almost 40% in five years, new data shows.
The proportional representation of these cases within the population, however, varies dramatically across the country. Annual admissions for people officially coded with ABI rocketed from 16,106 in 2010 to 22,426 by 2015, according to the latest figures. Among the 209 clinical commissioning groups (CCGs), admissions per 100,000 population in 14/15 ranged from 17.8 at NHS Corby to 82.2 in the NHS Northern, Eastern and Western Devon catchment. Traumatic subdural haemorrhage, bleeding and haematoma between the outer (dura) layer and the middle (meninges) layers of the brain had the highest number of coded admissions for every year studied – and also the largest increase over the five years. The study, Disease Insight Report – ABI, published by NHiS Commissioning Excellence, notes that: “Although this rise in ABI admissions must be interpreted in the context of improved coding practices, it is important to look at other reasons. "Many of these admissions are caused by trips and falls, which may represent an opportunity for prevention, particularly in the elderly. The variation of coded admissions per 100,000 of the CCG population may represent the need for better awareness and prevention measures across the country.” The average cost of each coded ABI admission by 2015 was £2,972, with unplanned admissions amounting to an estimated total cost to the NHS of £56.4m in 2014/15. Planned, or ‘elective’, ABI admissions – such as those made when a patient is transferred between providers – cost £11.8m in total.
Brain injury admissions rise but gaping regional disparities remain
This means that elective care made up 17% of the overall bill, but accounted for just 11% of the number of admissions. According to the research, males remain around twice as likely as females to acquire a brain injury, although the gap between genders is marginally closing. ‘Unspecified fall’ was by far the number one cause of coded ABI admissions, followed by falls on stairs and steps, on the same level and from slipping, tripping and stumbling. ‘Assault by bodily force’ was the fifth most common cause.
06
NRTIMES
ANALYSIS
Green shoots through the permafrost
Private investment growth and better patient outcomes provide some reasons for optimism in neuro-rehab, against the gloom of NHS cuts, writes Andrew Mernin.
T
he NHS is in a state of
a gaping rift between demand
to stave off any spending cuts.
care patients receive is improving.
‘permanent winter’, warned
and supply of beds.
Meanwhile, the independent
The odds of surviving a major trauma
neuro-rehab sector has grown from
have increased by almost 65% since
the FT recently, describing the However, NHS data compiled by
year-round strain on capacity that
various sources reveals signs of fresh
£240m to £315m in the last three
2009, says the Trauma Audit and
used to be seasonal.
investment, stability and improved
years, on a largely stable foundation
Research Association. This may be
A+E trolley queues, staff in revolt and patient outcomes. It also suggests
of investment.
thanks to the installation of major
families let down by bad decision-
the independent sector is getting to
In the same time, the total number
trauma centres (MTCs) in 2010.
making under intense pressure are
grips with the challenges created by
of neuro-rehab beds increased from
Only 5% of people admitted to
now the daily fodder of newspapers
austerity measures – although there
below the 4,000 mark to beyond
MTCs gain access to specialist
of every persuasion. In the meantime, are many hard yards ahead.
4,500. That the NHS’s approximate
inpatient rehabilitation, according
the government insists it is
The neuro-rehab market grew in
1,500 contribution to that hasn’t
to the first National Clinical Audit of
committed to the NHS’s future and
value from an estimated £460m in
shrunk significantly puts neuro-rehab Specialist Rehabilitation following
has its best interest at heart.
2013 to around £530m in 2016.
in a better state than many other
Major Injury (NCASRI), published late
Nevertheless, neuro-rehab has paid
The NHS’s proportion of that
areas of care.
last year; but generally, outcomes are
the price of cuts, with units and
remained static at £218m, having
Clearly, rising admission levels
getting better. The average length
services facing greater-than-ever
not increased annual investment
fuelled by better diagnosis and
of stay for neuro-rehab patients is
scrutiny to prove their worth.
over the three years.
population growth, mean the
predicted by the NHS to decrease by
But drill down into the numbers, and
Clinical Commissioning Groups
approximate 700 new beds added to
1% each year until 2021.
the picture for neuro-rehab isn’t quite (CCGs) fund neuro-rehab partly
the sector in the last three years are
As the NCASRI report shows,
as bleak as the wider healthcare
through their Continuing
not enough.
investment in rehabilitation can be
scene being set in the public
Healthcare (CHC) budget, which
In 2016 there was reportedly
recouped as the patient improves
eye. There are, of course, major
grew by around £500m between
demand for an estimated 14,000
and needs less care and stands a
difficulties, most notably
2015 and 2016 – potentially helping
neuro-rehab beds – meaning only
better chance of returning to work.
around 30% could possibly have
The time to recoup the outlay for
been met publicly or privately.
rehabilitation varies from study to
Level one care was well catered for
study but is about 14 months.
but levels two and three were where
Thus the government would
the unmet demand was highest,
actually save money by investing
data suggests.
in rehabilitation facilities.
Despite this gap, the standard of
Take note Mr Hunt!
Independent neuro-rehab has grown from £240m to £315m in the last three years, amid stable investment
MORE NEWS
NRTIMES 07
Neuro-rehab nursing body launched
been one before,” says UKANN’s
compare and discuss services.”
head of marketing Miranda Gardner,
The organisation will also give
a head injury nurse specialist
nurses working in the public and
in Southampton.
private sectors the chance to liaise
“It’s also about a collaboration of
with each other – and signpost
expertise. In MDTs, nurses have
members to education and training.
A new organisation is aiming to
multidisciplinary teams (MDTs)
been slightly overlooked in the
Ms Gardner says: “Training can be
give neuro-rehab nurses a louder
are supported by their respective
past and perhaps on the side-line
a challenge and there has been a
collective voice and a forum for
membership groups.
somewhat. We want to raise the
gap in terms of specific courses for
sharing ideas and expertise.
“We aim to bring people together
profile of neuro-rehab nursing,
neuro-rehab nurses.
The UK Alliance of Neuro-rehab
and provide a voice for nurses in
share ideas, job opportunities and
"It’s a field that nurses may drift into
Nurses (UKANN) has been formed
neuro-rehab where there hasn't
different career pathways and
themselves by accident and realise
to support and unite neuro-rehab
that they love it.
nurses across the UK, through
“But nursing is changing
various events and activities.
dramatically, moving away from
Its inception comes on the back of
just immediate bedside care and
several years of growth in neuro-
developing skills in other areas such
rehab nursing and its emergence as
as practical management of cases
a distinct healthcare career path.
and implementing the work
The group hopes to represent
of therapists.
nurses in the same way other
"Nurses provide a hub for the
professions involved in neuro-rehab
patient and talk to them about their whole range of issues from physical problems and symptom relief, to social and legal issues.”
We aim to provide a voice where there hasn't been one before
forthcoming meetings are due to be Nurses to get more support
announced soon. See nrtimes.co.uk for updates.
Homeless guide issued
Girls at higher concussion risk, US study finds
A new report has been
Teenage girls playing sport in school reportedly suffer
produced to help frontline staff
significantly more concussions than boys. Research
better support homeless people
in the US shows that concussions, or mild traumatic
suspected of having a brain injury.
brain injuries, sustained in high school sports, affect an
It defines brain injuries, how
estimated 300,000 adolescents in the States every year.
they are caused and why people
Lead author of the study, Wellington Hsu, professor of
who experience homelessness
orthopaedics at Northwestern University’s Feinberg
may be at risk. It also contains
School of Medicine, discovered that in sports played
information on how to support
by both genders, girls experienced significantly higher
people with, or suspected to
concussion rates than boys. The concussion rate was even
have, brain injury and how to
higher in girls’ soccer than boys’ American football. And
access specialist services.
08
Details about joining UKANN and its
NRTIMES
The homeless face a higher ABI risk
during the 2014-2015 school year, concussions were more common in girls’ soccer than any other sport.
Breakthrough in childhood TBI biomarker
Franz Gerstenbrand Award opens
A new biomarker may help to predict which children will take longer to
A global award which recognises neuro-rehab projects that have had a
recover from a traumatic brain injury (TBI), a preliminary study shows.
positive impact on patients is open for entries. The World Federation
Research published in the medical journal, Neurology, involved 21 children
for Neurorehabilitation (WFNR) Franz Gerstenbrand Award, now in
ages eight to 18 who were in a pediatric intensive care unit with a moderate
its 5th year, is accepting entries from clinicians, researchers and allied
to severe traumatic brain injury. Causes of the injuries included falls from
health professionals. The ÂŁ3,000 award is open to projects in any area
skateboards, scooters and bikes, motor vehicle-pedestrian accidents and
of neuro-rehab, such as a patient or clinic management initiative,
motor vehicle accidents with children as passengers.
research project, best practice development or work with technology. All professionals working in neuro-rehab are encouraged to enter, with special consideration given to applications from those under 30 years of age. The award is named after Professor Franz Gerstenbrand, in recognition of his continuous contributions to neuro-rehab. It is open to WFNR members and non-members worldwide. The annual, single prize will be awarded as either a travel bursary to a clinical conference, professional development course or research project. The deadline for entries is 30 November. See www.wfnr.co.uk for details.
Skateboarding was one of several TBI causes studied
The children were compared to 20 children of the same age who had not had a brain injury. All of the participants had brain scans with special 'diffusion weighted' MRIs, about two to five months after the injury and again about a year later. Their thinking and memory skills were also tested. The children also had electroencephalograms, or EEGs, while they were completing a computerised pattern-matching task to look at how quickly information is transferred from one hemisphere of the brain to the other across the corpus callosum, a collection of white matter that connects the two halves of the brain. Previous studies have shown that both children and adults have slow transfer times immediately after a traumatic brain injury. The study found that a few months after injury, half of the children with TBI had slow transfer time, while the other half were in the normal range and did not differ from the healthy children. The TBI-slow transfer time group also had disruptions to the white matter that got worse in the year between the first and second scans, while scans of the TBI-normal transfer time group showed no significant differences from the scans of the healthy children. In the tests of thinking and memory skills, children in the TBIslow transfer time group had significantly worse scores than the healthy children, while those in the TBI-normal transfer time group had scores between the two groups. "Traumatic brain injury is a leading cause of disability in children, but it's very difficult to predict long-term outcome and which children might need more aggressive treatment," said study author Emily L. Dennis, PhD, of
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the University of Southern California in Los Angeles. "While the severity of the injury certainly plays a role in this, there's still a lot of uncertainty you frequently have two patients with similar injuries who have different recoveries,� she added.
York Lincoln
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MORE NEWS WA3066 Quarter Page Ad-V2.indd 1
NRTIMES 09
25/10/2016 09:24
38
NRTIMES
O NE PU AL NC H L IT IS TA KE S
INTERVIEW
A flash of violence, fuelled by anger, adrenaline and often alcohol, can destroy a life in seconds. One punch attacks are a violent epidemic increasingly bringing people to the doors of neuro-rehab professionals. Peter Jackson meets one mother who's fighting back.
A
man who killed a young banker with
When Maxine reached the hospital, a consultant
a single punch in a "senseless" and
took her aside to tell her that Kristian had
"unprovoked" attack was jailed for six
sustained a blow to the head, was on a life
years in February.
support machine and had no brain activity.
This brought to the public’s attention the
Kristian was then transferred to Newcastle’s RVI,
potentially devastating consequences that such
but, before he made the journey, Maxine was
so-called `one punch attacks’ can have.
allowed to see him.
Trevor Timon, 31, hit Oliver Dearlove while he and
She recalls: “I went in and he was all tubed up. He
his friends were talking to a group of women in
was unrecognisable. Even to this day it beggars
Blackheath, London, in August 2016, punching
belief that a punch can cause so much damage.’’
him in the side of the head sending him to the
Surgeons at the RVI operated on Kristian.
ground and knocking him out.
“I was told they held very little hope for Kristian’s
Mr Dearlove, 30, died hours after the attack,
survival and that if he did survive he would be
which happened after he struck up a friendly chat
severely mentally and physically disabled. It was
with the women, who had been out celebrating a
pure hell,’’ says Maxine.
birthday with Timon.
The swelling returned and a second operation
Timon admitted manslaughter but was cleared
was necessary to remove part of Kristian’s
of murder at the Old Bailey.
frontal lobe. Maxine had her son baptized on the
The anguish of Oliver Dearlove’s family and
Thursday and on the Friday morning – almost a
girlfriend will have been only too horribly familiar
week after he had gone out to pick up his friends
to Maxine Thompson-Curl, who lost her own son
– the doctors told her that they were considering
Kristian in 2011.
switching off his life support, and she was
“Kristian was a good lad,’’ she says. “He was a
introduced to the organ donation team.
footballer and a cricketer, he was very popular,
On that Friday morning, Maxine went into
he had a girlfriend, was just going on to do an
Kristian’s room.
electronics engineering apprenticeship; he had
“He had a tear dripping down his face. I wiped the
a nice life.’’
tear and he looked at me and smiled and said,
That life was shattered on Friday September
`mum’. It was miraculous. The consultant said he
3 2010 when Kristian, 18, went to pick up
couldn’t believe it.’’
some friends from a nightclub in Consett,
Kristian came out of his comatose state, was
County Durham.
moved to a high dependency unit and showed
Maxine received a phone call at 1.45am to tell
signs of remarkable recovery.
her that her son was in an ambulance on his way
“He was okay and then there was a massive
to Dryburn Hospital, now University Hospital of
change in personality,’’ recalls Maxine. “He had
North Durham.
no inhibitions and his behaviour was very
He had been attacked in the nightclub toilets by a
erratic but I was told that over time that would
man who later received a 28-month jail sentence
settle down.’’
for grievous bodily harm.
In December Kristian was sectioned and moved
NRTIMES 39
CLINICAL PRACTICE
S E X A N N A X E SSEX ANDDD
REEL A T I P I O H S N N O I S T H A L R RELATIONSHIP IP
PPR S O PROBLEMS M OBLE E R M S A AND HOW TO TO NNDD H W TO OW HO A APPROACH H C A O R AA PP PPR OACH THEM TT HHEM EM
Neurological diseases and trauma can cause havoc for patients in their love lives. Here Barbara Chandler, an expert in the link between neurological disability and relationships, explains the sensitive challenges faced; and what healthcare professionals should do about them.
42
NRTIMES
CLINICAL PRACTICE
The neurophysiology of sex Sexuality is part of being human. Our sexuality affects how individuals perceive themselves and how they interact with those around them. Sexuality is a complex area of functioning encompassing sexual development which begins in utero; sexual awareness which develops through childhood and adolescence; sexual responsiveness and awareness (Bancroft J 2009). It is a key element in the formation of meaningful relationships in adult life. It is an area of strength but also of vulnerability to internal and external factors such as health, self-esteem, societal and family pressures and values. At the most basic level, sexuality is the means by which a partner is found for reproduction and the passing on of genetic material and this is evident in the animal kingdom as a whole. However, for humanity, it is about relationships. Neurological trauma or illness can have a major impact on sexual responsiveness and the capacity for relationships. More often than not sexual expression is something that occurs within a relationship. Part of the normal sexual experience includes masturbation and fantasy but it is in relationships that sexual expression is generally fulfilled.
Many factors can challenge the dynamic balance of a relationship and the onset of disease or trauma can have a profound effect
Why relationships matter The dynamics of a relationship have a profound effect on sexual functioning. Sexual expression begins with desire which is a function of the brain. Within the neural pathways there are both inhibitory and excitatory neurotransmitters. Dopamine is excitatory and Serotonin is inhibitory in the pathways linking desire to arousal of the autonomic and peripheral nervous system. Desire is influenced by a variety of cognitions and emotions such as mood – excited, happy, fearful, oppressed memories of previous good sexual experience or memories of painful abusive relationships. It will be affected by fatigue which is a very common symptom of neurological disease or trauma. It may be influenced by social context – is this relationship developing in a private setting or is it within a nursing home where privacy is difficult to establish? The most recent imaging studies have demonstrated that certain parts of the brain are active in sexual desire, including the anterior cingulate cortex which connects to the amygdala, which in turn has a key role in emotional responsiveness (Zeki A 2007). The central nervous system, through a complex set of pathways involving the higher levels of cortical functioning, provides a delicately balanced system to allow sexual expression within relationships. Any part of the system can be affected by physical, psychological, social and emotional factors. The brain in turn connects through the spinal cord to the periphery. The sacral segment of the spinal cord is a key area from which nerves travel to the genitalia. The parasympathetic output to the genitalia comes from the sacral cord and the sympathetic nerve supply from the thoracic and upper lumbar cord. In response to sexual arousal the nervous
system connects to the genitalia via the spinal cord leading to a neurovascular response with the parasympathetic nerves triggering erection in the male and vasocongestion in the female. The sympathetic system is involved in ejaculation. Any disease or trauma to the nervous system or medications acting on the nervous system can interrupt the pathways. For example, a thoracic spinal cord injury will separate the sacral spinal cord from control by higher centres so that in the male reflex erections may still occur in response to a variety of stimuli including full bladder or irritation to the skin, but psychogenic erections in response to sexual desire may not occur. What makes a good couple? Key factors include mutual attraction, love, having fun together, enjoying sex together, trusting each other, ease of communication and being special to each other. As relationships move into longer term commitments, there are additional factors, including shared experiences and future plans, hopes and expectations. Demands are placed on relationships such as financial commitments, bringing up children, looking after elderly relatives. Meanwhile, each individual brings into that relationship their own health, beliefs, values and approaches to managing stress; their past experiences both good and bad, their need for autonomy and their need for intimacy. Each person has their own self-image and an image of their partner, which can be quite different to how other people see them. Impacting on the relationship are external pressures which can be social, financial, work and family pressures. Many factors can challenge the dynamic balance of the relationship and the onset of disease or trauma can have a profound impact.
NRTIMES 43