NR Times

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.

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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

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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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NRTIMES

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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27

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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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

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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

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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

NRTIMES 35

INSIGHT

36

NRTIMES

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

WE NEED A NETWORK OF SERVICES FOR THE HOMELESS...WE NEED TO BE COLLABORATIVE 40

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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.

NRTIMES 41

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

NRTIMES

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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