NR Times

NR

ISSUE 2 Spring 17

NEURO REHAB

SEX GUIDE Managing your patients' most intimate problems

TIMES

MURDER HUNT The net closes in on the neurone killer ONE PUNCH Fighting back against a violent epidemic

In association with

LOCKED OUT THE BRAIN INJURED KIDS WRITTEN OFF AT SCHOOL

MAGIC MOMENT How pioneering approach is transforming young lives

REFUGEE CRISIS Brain injuries soar on the dangerous road to Europe

TECH BOOST MPs switched on to the need for change

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WELCOME

EDITOR'S NOTE

Welcome to the Spring ’17 issue of NR Times, bringing together the many professions working with brain and spinal injury clients in the UK.

In this post-truth age of fake news and the ever-widening chasm between left and right medias, the true state of the NHS is difficult to pin down.

Is its future in grave danger, or will the government’s ‘sustainability and transformation plans’ save it? Will it really be swallowed up by the private sector in coming years? Can its workforce – and the many non-UK nationals within it – survive Brexit?

And what of neuro-rehab?

Professionals working with neurological conditions, either in the NHS or on behalf of its clients in the private sector, face a lot of uncertainty. The noise generated by Whitehall mudslingers, newspapers and social media offers little clarity about the future.

In search of unbiased answers and hard evidence, we’ve stripped back the very latest facts about neuro-rehab and the direction in which it is heading. Our data reveals a sector built on relatively stable ground but with several underlying challenges. See pages 6&7 for more.

The scandal of brain injuries in the criminal justice system, meanwhile, looks to be finally getting at least some of the attention it deserves. This quarter we report on two very different approaches being taken to stop a disproportionate amount of the brain injured falling into the potential abyss of prison.

We also join a world-leading scientist on the trail of a deadly, malevolent force in the brain and spinal cord. Stopping it won’t be

easy, but doing so could save millions of lives from the ravages of neurodegenerative diseases. As our interview reveals, he’s getting ever-closer to catching the mysterious agent, A1.

In this issue, you’ll also find updates on how new technologies and therapies are extending the limitations of neuro-rehab as well as analysis on emerging challenges and how they are being outsmarted.

Before our next edition, NR Times is planning a busy few months of neuro-rehab exhibitions, seminars and conferences.

If you see someone juggling notes, coffee and a dictaphone, that’ll probably be me.

Please come over and say hello. I’d be delighted to hear about your experiences in neuro-rehab and the issues that matter to you.

Andrew Mernin andrew@aspectpublishing.co.uk

Published by Aspect Publishing Ltd in association with UKABIF Aspect Publishing, 20-22 Wenlock Rd, London, N1 7GU Registered company in England and Wales No. 10109188 All contents ©2016 Aspect Publishing Ltd.

NRTIMES 03

CONTENTS

24

COVER STORY

NEWS The latest from the world of neuro-rehab

The brain injured kids written off at school

32

06

18

MAKING LIMITATIONS DISAPPEAR Why magic therapy is no cheap trick

ON THE TRAIL OF THE NEURONE KILLER Net closes in on deadly force

38

ONE PUNCH IS ALL IT TAKES Fighting back against a violent epidemic 04

NRTIMES

42

SEX AND RELATIONSHIPS Clinical guide to intimate problems

CONTENTS

48

CRISIS WITHIN A CRISIS Brain injuries on the long road to Europe

56

CONDITION UPDATE: MS Treatments, challenges and breakthroughs

52

TECH BOOST Campaign for change goes right to the top

60

EVENTS Dates for your diary in the months ahead

62

CLOCKING OFF

With a surfing hero and a Buddhist monk NRTIMES 05

Males remain twice as likely as females to acquire a brain injury

H

ospital admissions with a diagnosis of acquired brain injury (ABI)

have soared by almost 40% in five years, new data shows.

The proportional representation of these cases within the population, however, varies dramatically across the country.

Annual admissions for people officially coded with ABI rocketed from 16,106 in 2010 to 22,426 by 2015, according to the latest figures.

Among the 209 clinical commissioning groups (CCGs), admissions per 100,000 population in 14/15 ranged from 17.8 at NHS Corby to 82.2 in the NHS Northern, Eastern and Western Devon catchment.

Traumatic subdural haemorrhage, bleeding and haematoma between the outer (dura) layer and the middle (meninges) layers of the brain had the highest number of coded admissions for every year studied – and also the largest increase over the five years.

The study, Disease Insight Report – ABI, published by NHiS Commissioning Excellence, notes that: “Although this rise in ABI admissions must be interpreted in the context of improved coding practices, it is important to look at other reasons.

"Many of these admissions are caused by trips and falls, which may represent an opportunity for prevention, particularly in the elderly. The variation of coded admissions per 100,000 of the CCG population may represent the need for better awareness and prevention measures across the country.”

The average cost of each coded ABI admission by 2015 was £2,972, with unplanned admissions amounting to an estimated total cost to the NHS of £56.4m in 2014/15.

Planned, or ‘elective’, ABI admissions – such as those made when a patient is transferred between providers – cost £11.8m in total.

Brain injury admissions rise but gaping regional disparities remain

This means that elective care made up 17% of the overall bill, but accounted for just 11% of the number of admissions.

According to the research, males remain around twice as likely as females to acquire a brain injury, although the gap between genders is marginally closing.

‘Unspecified fall’ was by far the number one cause of coded ABI admissions, followed by falls on stairs and steps, on the same level and from slipping, tripping and stumbling.

‘Assault by bodily force’ was the fifth most common cause.

06

NRTIMES

ANALYSIS

Green shoots through the permafrost

Private investment growth and better patient outcomes provide some reasons for optimism in neuro-rehab, against the gloom of NHS cuts, writes Andrew Mernin.

T

he NHS is in a state of

a gaping rift between demand

to stave off any spending cuts.

care patients receive is improving.

‘permanent winter’, warned

and supply of beds.

Meanwhile, the independent

The odds of surviving a major trauma

neuro-rehab sector has grown from

have increased by almost 65% since

the FT recently, describing the However, NHS data compiled by

year-round strain on capacity that

various sources reveals signs of fresh

£240m to £315m in the last three

2009, says the Trauma Audit and

used to be seasonal.

investment, stability and improved

years, on a largely stable foundation

Research Association. This may be

A+E trolley queues, staff in revolt and patient outcomes. It also suggests

of investment.

thanks to the installation of major

families let down by bad decision-

the independent sector is getting to

In the same time, the total number

trauma centres (MTCs) in 2010.

making under intense pressure are

grips with the challenges created by

of neuro-rehab beds increased from

Only 5% of people admitted to

now the daily fodder of newspapers

austerity measures – although there

below the 4,000 mark to beyond

MTCs gain access to specialist

of every persuasion. In the meantime, are many hard yards ahead.

4,500. That the NHS’s approximate

inpatient rehabilitation, according

the government insists it is

The neuro-rehab market grew in

1,500 contribution to that hasn’t

to the first National Clinical Audit of

committed to the NHS’s future and

value from an estimated £460m in

shrunk significantly puts neuro-rehab Specialist Rehabilitation following

has its best interest at heart.

2013 to around £530m in 2016.

in a better state than many other

Major Injury (NCASRI), published late

Nevertheless, neuro-rehab has paid

The NHS’s proportion of that

areas of care.

last year; but generally, outcomes are

the price of cuts, with units and

remained static at £218m, having

Clearly, rising admission levels

getting better. The average length

services facing greater-than-ever

not increased annual investment

fuelled by better diagnosis and

of stay for neuro-rehab patients is

scrutiny to prove their worth.

over the three years.

population growth, mean the

predicted by the NHS to decrease by

But drill down into the numbers, and

Clinical Commissioning Groups

approximate 700 new beds added to

1% each year until 2021.

the picture for neuro-rehab isn’t quite (CCGs) fund neuro-rehab partly

the sector in the last three years are

As the NCASRI report shows,

as bleak as the wider healthcare

through their Continuing

not enough.

investment in rehabilitation can be

scene being set in the public

Healthcare (CHC) budget, which

In 2016 there was reportedly

recouped as the patient improves

eye. There are, of course, major

grew by around £500m between

demand for an estimated 14,000

and needs less care and stands a

difficulties, most notably

2015 and 2016 – potentially helping

neuro-rehab beds – meaning only

better chance of returning to work.

around 30% could possibly have

The time to recoup the outlay for

been met publicly or privately.

rehabilitation varies from study to

Level one care was well catered for

study but is about 14 months.

but levels two and three were where

Thus the government would

the unmet demand was highest,

actually save money by investing

data suggests.

in rehabilitation facilities.

Despite this gap, the standard of

Take note Mr Hunt!

Independent neuro-rehab has grown from £240m to £315m in the last three years, amid stable investment

MORE NEWS

NRTIMES 07

Neuro-rehab nursing body launched

been one before,” says UKANN’s

compare and discuss services.”

head of marketing Miranda Gardner,

The organisation will also give

a head injury nurse specialist

nurses working in the public and

in Southampton.

private sectors the chance to liaise

“It’s also about a collaboration of

with each other – and signpost

expertise. In MDTs, nurses have

members to education and training.

A new organisation is aiming to

multidisciplinary teams (MDTs)

been slightly overlooked in the

Ms Gardner says: “Training can be

give neuro-rehab nurses a louder

are supported by their respective

past and perhaps on the side-line

a challenge and there has been a

collective voice and a forum for

membership groups.

somewhat. We want to raise the

gap in terms of specific courses for

sharing ideas and expertise.

“We aim to bring people together

profile of neuro-rehab nursing,

neuro-rehab nurses.

The UK Alliance of Neuro-rehab

and provide a voice for nurses in

share ideas, job opportunities and

"It’s a field that nurses may drift into

Nurses (UKANN) has been formed

neuro-rehab where there hasn't

different career pathways and

themselves by accident and realise

to support and unite neuro-rehab

that they love it.

nurses across the UK, through

“But nursing is changing

various events and activities.

dramatically, moving away from

Its inception comes on the back of

just immediate bedside care and

several years of growth in neuro-

developing skills in other areas such

rehab nursing and its emergence as

as practical management of cases

a distinct healthcare career path.

and implementing the work

The group hopes to represent

of therapists.

nurses in the same way other

"Nurses provide a hub for the

professions involved in neuro-rehab

patient and talk to them about their whole range of issues from physical problems and symptom relief, to social and legal issues.”

We aim to provide a voice where there hasn't been one before

forthcoming meetings are due to be Nurses to get more support

announced soon. See nrtimes.co.uk for updates.

Homeless guide issued

Girls at higher concussion risk, US study finds

A new report has been

Teenage girls playing sport in school reportedly suffer

produced to help frontline staff

significantly more concussions than boys. Research

better support homeless people

in the US shows that concussions, or mild traumatic

suspected of having a brain injury.

brain injuries, sustained in high school sports, affect an

It defines brain injuries, how

estimated 300,000 adolescents in the States every year.

they are caused and why people

Lead author of the study, Wellington Hsu, professor of

who experience homelessness

orthopaedics at Northwestern University’s Feinberg

may be at risk. It also contains

School of Medicine, discovered that in sports played

information on how to support

by both genders, girls experienced significantly higher

people with, or suspected to

concussion rates than boys. The concussion rate was even

have, brain injury and how to

higher in girls’ soccer than boys’ American football. And

access specialist services.

08

Details about joining UKANN and its

NRTIMES

The homeless face a higher ABI risk

during the 2014-2015 school year, concussions were more common in girls’ soccer than any other sport.

Breakthrough in childhood TBI biomarker

Franz Gerstenbrand Award opens

A new biomarker may help to predict which children will take longer to

A global award which recognises neuro-rehab projects that have had a

recover from a traumatic brain injury (TBI), a preliminary study shows.

positive impact on patients is open for entries. The World Federation

Research published in the medical journal, Neurology, involved 21 children

for Neurorehabilitation (WFNR) Franz Gerstenbrand Award, now in

ages eight to 18 who were in a pediatric intensive care unit with a moderate

its 5th year, is accepting entries from clinicians, researchers and allied

to severe traumatic brain injury. Causes of the injuries included falls from

health professionals. The ÂŁ3,000 award is open to projects in any area

skateboards, scooters and bikes, motor vehicle-pedestrian accidents and

of neuro-rehab, such as a patient or clinic management initiative,

motor vehicle accidents with children as passengers.

research project, best practice development or work with technology.

All professionals working in neuro-rehab are encouraged to enter, with special consideration given to applications from those under 30 years of age. The award is named after Professor Franz Gerstenbrand, in recognition of his continuous contributions to neuro-rehab. It is open to WFNR members and non-members worldwide.

The annual, single prize will be awarded as either a travel bursary to a clinical conference, professional development course or research project.

The deadline for entries is 30 November. See www.wfnr.co.uk for details.

Skateboarding was one of several TBI causes studied

The children were compared to 20 children of the same age who had not had a brain injury. All of the participants had brain scans with special 'diffusion weighted' MRIs, about two to five months after the injury and again about a year later. Their thinking and memory skills were also tested.

The children also had electroencephalograms, or EEGs, while they were completing a computerised pattern-matching task to look at how quickly information is transferred from one hemisphere of the brain to the other across the corpus callosum, a collection of white matter that connects the two halves of the brain. Previous studies have shown that both children and adults have slow transfer times immediately after a traumatic brain injury.

The study found that a few months after injury, half of the children with TBI had slow transfer time, while the other half were in the normal range and did not differ from the healthy children. The TBI-slow transfer time group also had disruptions to the white matter that got worse in the year between the first and second scans, while scans of the TBI-normal transfer time group showed no significant differences from the scans of the healthy children. In the tests of thinking and memory skills, children in the TBIslow transfer time group had significantly worse scores than the healthy children, while those in the TBI-normal transfer time group had scores between the two groups.

"Traumatic brain injury is a leading cause of disability in children, but it's very difficult to predict long-term outcome and which children might need more aggressive treatment," said study author Emily L. Dennis, PhD, of

Christchurch Group is an award-winning neurological rehabilitation specialist.

Personalised care is provided by highly experienced, internationally renowned rehabilitation medicine consultants, neurologists, specialist nurses and therapists within a community setting.

With rehabilitation centres in six UK locations, Christchurch Group provides neurological rehabilitation as well as specialist neurobehavioural rehabilitation, spinal injury rehabilitation, ventilated care and the management of progressive neurological conditions.

Birmingham Northampton Bedford Oxford

To make a referral call 01904 430 600 or 07595 655 239 or email referrals@christchurchgroup.co.uk For further information visit christchurchgroup.co.uk

the University of Southern California in Los Angeles. "While the severity of the injury certainly plays a role in this, there's still a lot of uncertainty you frequently have two patients with similar injuries who have different recoveries,� she added.

York Lincoln

Twitter: @christchurchgro Linkedin: christchurch-group

MORE NEWS WA3066 Quarter Page Ad-V2.indd 1

NRTIMES 09

25/10/2016 09:24

MP Chris Bryant

Get shorty

Neuro-rehab’s very own Oscar award is once again open for entries.

The 2017 UKABIF Short Film Award aims to raise awareness of brain injury by recognising filmmaking that inspires and educates audiences about the impact of brain injury.

It must be a maximum of five minutes and is open to UKABIF members and non-members in the UK. UKABIF chair Professor Mike Barnes said: “We were amazed by the standard of entries last year – the response was excellent. We want to encourage entries from everyone involved in the care of people with an acquired brain injury, as well as those individuals with a brain injury and their families or carers.”

The deadline for entries is 30 September. The winning entry and two runners-up will be announced at UKABIF’s annual conference at the Royal Society of Medicine, London, on the 13 November. The winner will receive £750 plus a trophy and the runners-up will each receive £250.

See www.ukabif.org.uk/filmaward for details.

Brain injury lobby mobilises

Injury (ABI) Alliance.

The ABI Alliance plans to lobby the

This body brings together major charities

government to change one issue at a time

and some of the UK’s most influential

which it believes will improve the treatment

Two new groups launched this quarter will

professional groups linked to brain injuries.

and management of brain injury cases.

see politics, neuro-rehab and the third sector

Represented in the lobby are UKABIF,

Initially it plans to liaise closely with the

conspiring to improve the way brain injuries

Meningitis Now, the Encephalitis Society,

new APPG and its cross-party members, to

are handled in the UK.

the Brain Injury Social Work Group

establish the most pressing legislative or

A new all-party parliamentary group

(BISWG) and the British Society of

policy-related change required in healthcare

(APPG) focused entirely on brain injury is to

Rehab Medicine.

or elsewhere. It will then use the considerable

be launched at Westminster later this month.

Other members include One Punch, the

influence of its members to campaign for the

The group will be chaired by Labour MP

Stroke Association, APIL, ARNI, Momentum,

desired change.

Chris Bryant, with Conservative MP John

ABI Ireland, the Child Brain Injury Trust,

Its first campaign will be announced in the

Hayes and Baroness Grey-Thompson, from

the Brain and Spine Foundation, INPA,

coming months.

the House of Lords, also overseeing it.

BABICM, and BIRT.

See NR Times Summer ’17 edition for details.

A Brain Injury APPG was originally launched in 2004 but subsequently discontinued. This time it will have the backing of another organisation officially launched in April: The Acquired Brain 10

NRTIMES

It will use the considerable influence of its members to campaign for change

Neuro-rehab professionals offered clearer view of MS pathways

will overwhelm services to the point that people

MS specialist teams are being encouraged to

rehab services to be clear when they should

give neuro-rehab services a clearer idea of

get involved with people with MS. It has also

when they should intervene with people with

urged them to take measures to identify people

the condition.

with advanced MS who have lost contact with

Two thirds agreed that there was a need for

The measure is one of a number of

specialist services, for example by going into GP

rehabilitation medicine to get more involved in

recommendations issued to MS teams across

practices to find them. MS teams have also been

the care of people with MS locally.

the UK on the back of an extensive MS

encouraged to identify a lead professional for

The resulting report on improving services for

research paper. The MS Forward View on

people with Advanced MS.

people with advanced MS proposes a model of

Advanced MS was a one year project run by the

One of the four health professional surveys

care in which a flexible blend of three elements:

MS Trust, resulting in a cross sector consensus

which informed the project involved 80

disease modification, symptom management

and final report published late last year.

rehabilitation medicine consultants.

and neuro-rehab are available throughout the

The aim of the project was to identify the

More than half (52%) of th0se respondents

course of the disease. The report highlights that

priority actions needed across the MS sector to

agreed that people with MS were typically

if neuro-rehab capacity is available, it may make

deliver efficient, effective and equitable services

referred to them later in the disease course than

sense for care for people with advanced MS to

for everyone with MS, in the context of changing

was optimal.

be led by a rehab or MS nurse specialist rather

treatment paradigms.

While most respondents had informal but

than a neurologist.

Without new ways of working, the charity says,

established working relationships with

there is a risk that the pressures of prescribing

neurology colleagues, fewer than one in five had

See page 56 for the very latest developments

and monitoring disease modifying treatments

formalised written pathways in MS.

in MS treatment and care provision.

who are not on disease modifying drugs will miss out on specialist care. It has recommended that all MS specialist teams set up written protocols and pathways with local neuro-

Without new ways of working there is a risk that people will miss out on specialist care

Hope for people with historic injuries

Gene damage linked to Alzheimer’s

A new non-invasive drug has been used to successfully treat a spinal

Scientists have found that head injuries can damage hundreds

cord injury sustained more than 40 years ago.

of genes leading to an increased risk of brain disorders like

The treatment creates stem cells deep below the skin using a highly-

autism and diseases such as Alzheimer's.

penetrating ointment. The drug is delivered using technology similar to

Brain trauma can make damaged genes produce irregular

that used in nicotine patches.

proteins which are thought to be a cause of Alzheimer's.

TetraStem is a new tetracycline-based topical antibiotic that is FDA-

Furthermore, scientists have discovered a set of master genes

registered to treat cuts and burns. Five years ago it was discovered

that could lead to new drugs to treat brain diseases, and future

that the-then new, off-label drug, could also induce stem-cell healing;

research could pay off with new compounds and foods that

first in an animal research program, then followed by human

can repair the damaged genes and fight disease.

research programs.

Researchers put 20 rats in a maze designed to challenge

Good results have now been obtained after treatment of a spinal cord

their memories. They induced brain injuries in 10 of them

injury sustained 42 years ago. The new ointment is being developed

afterwards and ran them through the maze again.

in the States by the not-for-profit, FDA-registered drug manufacturing

As expected, the brain injured rats took longer to finish. From

business, Phillips Company.

the damaged rats, scientists analysed the genes from the hippocampus (268 genes altered) and white blood cells (1215 genes altered).

The drug is delivered like a nicotine patch and can induce stem-cell healing

It was a major surprise to the team that there were so many genes altered in the white blood cell samples.

The study was published in the journal, EBioMedicine.

MORE NEWS

NRTIMES

11

US for neuroscience investment.

Recent headlines suggest Silicon Valley billionaires and big American tech firms are increasingly targeting the brain as their next untapped territory.

Former president Barack Obama’s Brain Initiative pumped millions of pounds worth of investment into new technologies that improve knowledge and understanding of the brain, including ones that enable the recording of neurones.

Several start-ups sprouted up as a result, such as Paradromics and Cortera. President Trump’s administration has so far shown no sign of scrapping the programme, potentially paving Billionaire Bryan Johnson

the way for more breakthroughs around braincomputer technologies in the future.

Even without government backing, there appears

Funding boost brings further proof of US neuroscience resurgence

progress towards identifying a lead compound

to be plenty of investor interest in neuro-

with promising therapeutic potential in

technologies and neuroscience.

Alzheimer's disease.

Billionaire entrepreneur Bryan Johnson last

Professor Greenfield, CEO and founder of the

year invested US$100m in his new venture

firm, said: "We are delighted to have secured this

Kernel, which is entirely focussed on enhancing

investment to support the continued growth of

human intelligence through brain implants that

UK firm Neuro-Bio has received a US$3.2m

our company from start-up to small enterprise.

could link thoughts to computers. His plans could

investment boost from the US to support its

The investment from Kairos is a recognition of

help people with brain injuries or impairments.

work in tackling neurodegenerative diseases.

our fresh approach as well as the expertise of

Facebook founder Mark Zuckerberg is similarly

The funding comes from US-based Kairos

our team; this investment will increase the

embroiled in developing neuro-technologies,

Ventures and will enable the continual

possibility of the discovery of a novel disruptive

according to reports. Recent job postings for

development of a diagnostic tool for early

treatment that is much needed to improve

Facebook’s mysterious ‘Building 8’ division

detection of Alzheimer's and to discover new

outcomes for patients with Alzheimer's."

mention “neuroimaging”, “electrophysiological

drugs targeting the disease.

Alex Andrianopoulos, chief research and

data” and the “communications platform of

Neuro-Bio has been pioneering a novel

development officer at Kairos Ventures, said:

the future”.

approach to Alzheimer's disease and related

"Alzheimer's is a major healthcare challenge

An advertised role for a brain computer

neurodegenerative disorders since 2013. The

that is fast becoming a global epidemic. With

interface engineer with a Ph.D in neuroscience

innovative Neuro-Bio technology is the result

Neuro-Bio's novel approach, a world class team

also suggests Zuckerberg will increasingly be

of over 40 years of basic research by Baroness

of scientists and our investment and support, we

targeting brain-related technology development

Professor Susan Greenfield's group, initially at

believe that the company will make a significant

in the future.

Oxford University.

impact on the fight against Alzheimer's."

Elon Musk – the Tesla and SpaceX CEO who

It points to a previously unidentified mechanism

Recent months have seen the demise of

plans to colonise Mars – has also thrown his hat

underlying the continuing cycle of cell death that

various anti-Alzheimer drug candidates, based

into the neuroscience ring. He has hinted at a

characterises the neurodegenerative process.

on traditional targets. Neuro-Bio hopes to open

project related to 'neural lace', which he said, in a

The company has been exploring whether

up a new direction in the quest for an

2016 conference, could lead to “symbiosis

activation of this brain mechanism could be

effective treatment.

with machines”.

halted by pharmaceutical intervention and

Neuro investment surge

Tech giant IBM, meanwhile, recently signed a

how these changes are reflected in a biomarker

While the US$3.2m Neuro-Bio received is

five-year deal with Israeli startup MedyMatch to

present in blood. The new investment will allow

relatively modest against the lucrative

integrate the latter’s artificial intelligence-based

Neuro-Bio to develop the biomarker into a

backdrop of global pharma, it is perhaps

technology to better detect bleeding in the brain

diagnostic tool and to make substantive

another sign of the strong appetite in the

due to head trauma or stroke.

12

NRTIMES

medicine have been seen as providing support to patients in pain, research into the particular pathways and mechanisms that produce this benefit is currently "limited and long overdue", Neil Mahapatra, managing

New cannabis research

partner at Kingsley Capital Partners, said.

As NR Times reported last quarter, there is now good evidence to show that cannabis,

Oxford University is to launch a

inflammatory disease.

including the non-psychoactive component

multimillion-pound research program which

Scientists at the university expect to do this by

CBD, can help to treat chronic pain, such as

aims to develop new therapies for acute and

studying the cellular, molecular, and systems

that experienced post brain or spinal injury.

chronic conditions using medical cannabis.

mechanisms of cannabinoids.

A recent review also found moderate evidence

The university is being backed by £10m

"Cannabinoid research has started to

that it helps stimulate appetite, which may

initial investment from private equity group

produce exciting biological discoveries and

also have relevance to neuro-rehab units.

Kingsley Capital Partners, through its new

this research program is a timely opportunity

Limited evidence was found to support

bio-pharmaceutical firm Oxford Cannabinoid

to increase our understanding of the role

cannabis' role in alleviating depression.

Technologies (OCT).

of cannabinoids in health and disease,"

Cross party MPs called for cannabis to

Using Oxford's expertise in immunology,

Ahmed Ahmed, professor of gynaecological

be legalised for medicinal purposes last

neuroscience and cancer, the project will

oncology at Oxford University, said in

year in light of the increasing amount of

seek ways of developing new treatments for

a statement.

evidence for its potential value in treating

those suffering with pain, cancer and

While medical cannabis and cannabinoid

various conditions.

INPA is a membership organisation for independent providers who specialise in neurorehabilitation our members provide over half of the brain injury rehabilitation in the UK.

MORE NEWS

Setting standards for neurorehabilitation Developing focused training programmes Organising collaborative research

Representing providers of:

• Neurorehabilitation • Neurobehavioural rehabilitation • Spinal rehabilitation • Treatment for those detained under the Mental Health Act 2007 • Specialist nursing including nursing for ventilated patients • Respite • Community services • Day care

What we do:

• Raise the profile of independent providers within UK neurorehabilitation.

• Provide a collective voice for members in the media and to inform policy.

• Make recommendations to industry.

• Run a recognised training programme for rehabilitation assistants.

• Carry out research into the collective results of our work.

• Ensure members adhere to a set of recognised standards.

www.in-pa.org.uk

NRTIMES

13

The linkworker scheme gets underway

There are no UK studies for the prevalence of TBI in women offenders, but in other developed countries the figures are 42% to 64%, which are similar to prevalence rates among men.

"The current system does not specifically identify prisoners with brain injury, particularly undiagnosed brain injury,’’ said Natasha Bloor, brain injury linkworker with The Disabilities Trust Foundation.

“Healthcare staff don’t have time to engage with individuals to provide care and support based on that person’s individual needs and personal goals.

Yet such person-centred support, which aids adjustment and compensation for the cognitive

New scheme for female prisoners with brain injuries

A

and behavioural problems that arise from brain injury, can make a difference to increasing engagement in offender rehabilitation and improving outcomes.’’

She added: “Without the right support, brain injury can increase the risk of offending behaviour

pioneering scheme has been launched

following a brain injury, even years after it

– and of course offending behaviour may also

at HMP Drake Hall near Stafford for

was sustained, allows an individual a greater

increase the risk of brain injury.’’

female offenders with a brain injury.

chance of engaging with services, integrating

The new scheme could relieve some of the

They are receiving support from a specialist

with the community and breaking the

pressure on hard-pressed prison staff, as

linkworker from the Disabilities Trust

cycle of re-offending. The initiative comes

prisoners with brain injury can be particularly

Foundation in the first scheme of its type in a

against a background of UK prisons in crisis –

vulnerable in a prison environment. Not only may

UK women’s prison.

overcrowded, understaffed and with a record

they need more time and support from officers,

The pilot linkworker service, launched in

number of prisoners committing suicide in jails,

but may also have problems articulating their

February, will deliver direct one-to-one support

running at around 10 deaths a month.

difficulties and needs coherently to get

to women with brain injuries and develop

More prisoners are being diagnosed with

that support.

partnerships with health, social care, probation,

mental health problems and, according to the

“The linkworker can help facilitate

homeless, and drug and alcohol services.

Prison Reform Trust, 30% of women have had

communication between prisoners and officers

The aim is that those with brain injuries will

a previous psychiatric admission before they

and provide information regarding a person’s

be identified on admission, using the

entered prison.

individual needs and how officers can engage

foundation’s Brain Injury Screening Index (BISI)

Some of these problems are likely to be

with that individual in an effective manner,’’

questionnaire before being referred to

connected to brain injury. About 60% of adult

explained Ms Bloor. “The project also provides

the specialist linkworker.

prisoners and 30% of young offenders have a

brain injury awareness training for frontline

Prison staff will also be provided with brain

history of traumatic brain injury (TBI), often

prison staff to give them the tools and techniques

injury training and given simple tips to support

involving multiple injuries. Those with a

to help them manage and support prisoners with

the women concerned, such as speaking more

history of TBI are more likely than other

such injuries.’’

slowly without distractions to allow information

prisoners to be prolific offenders with studies

However, given that prison staff are under so

to be processed, suggesting diaries and written

indicating that TBI increases the risk of

much pressure, how can the foundation ensure

reminders to assist with memory problems.

offending by 50% to 100%.

brain injury training is prioritised?

It is also intended that each woman has the

“In Drake Hall, the brain injury awareness training

appropriate network in place on discharge

has been received extremely well,’’ she said. “The

from prison.

This two-year, £107,000 pilot scheme aims to establish whether specialist support 14

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Brain injury increases the risk of offending

first session reached maximum capacity after just one week of advertising, and there are already officers on the waiting list for the next session.

"The training will be delivered at different points of the year, so all staff have the opportunity to attend. I am not aware of any brain injury specific training that officers currently receive, although we would like to see this included in the standard training given to all prison officers.’’

The programme has several goals: • Identify women with a brain injury who enter custody. The women entering the prison will receive a healthcare induction where the BISI questionnaire, which has been clinically validated, will be administered.

If the prisoner screens positive using the BISI,

So far, Ms Bloor is optimistic and pleased with

appear to be common across men and women.

a referral will be sent to the linkworker.

the scheme’s progress.

For example, TBI appears to increase the

• Develop a care pathway and provide

“The project at Drake Hall is going very well;

likelihood of committing violent crime for both

dedicated support to women with a brain

the linkworker has a full caseload and a short

genders and all with TBI may have difficulty

injury. The care plan will be developed after

waiting list. The need for the service is apparent,

engaging with and benefiting from offender

an initial assessment; the clinical interview

but funding will always affect the likelihood of

rehabilitation. TBI screening, therefore, is

will gather information about the individual’s

running the project elsewhere, which is why

regarded as important to determine who should

personal goals, current difficulties and levels

the independent evaluation of the Drake Hall

be referred for support.

of education.

project that we have commissioned from Royal

The scheme has been largely funded by the

Using this information an individual care

Holloway, University of London is so important.’’

Barrow Cadbury Trust and The Pilgrim Trust,

plan will be devised with the service user.

This project comes in the wake of the brain

which raises the question of whether there

The service user will then have one-to-one

injury linkworker services previously provided

should have been government funding to

sessions with the linkworker to help achieve

by the Disabilities Trust Foundation in male

support it and whether the issue of brain injuries

the goals on the care plan. The linkworker will

prisons and young offender institutions.

in the prison system is being given enough

also set up support networks, for example with

An evaluation by Professor Huw Williams of

attention by the government.

housing providers and social care teams as

those projects recommended the ‘further

“We are grateful for the support of Barrow

well as probation services, for when the service

adoption of linkworker-type services within

Cadbury and the Pilgrim Trust for this project,

user is released from prison.

custodial systems’ and also called for

and for that of Lankelly Chase who are funding

• Raise awareness of brain injury within

more research.

the male prison project,’’ said Ms Bloor.

the female prison population. Prison staff

A controlled study within a male prison is

“There has been some public funding - our

will receive brain injury training, which will

currently being undertaken by the trust

original pilot Linkworker at HMP Leeds was

increase staff awareness, and the linkworker

with the aim of evaluating the impact of the

later commissioned by the prison for a further

will attend a prison health fair day where

linkworker service on outcomes for prisoners,

year. It is inevitable that in times of austerity

information about the service will be discussed

including reoffending rates. Ms Bloor said:

public sector budgets are tight.

with prisoners and where they will have

“We hope this will inform future decision

“Arguably it is a real opportunity for the third

the chance to ask questions and take an

making about the best way of supporting

sector to lead innovative thinking in a way

information pack.

prisoners with brain injury. We cannot name

which governments cannot, despite the benefits

• Explore causal links between self-harm,

the prison at present, as this could skew the

that brings.’’

violence and brain injury in the female

results of the study.’’

However, she believes the government could

prison population. The data that is being

There have been studies which have suggested

give some of these issues more attention.

collected will be analysed by the foundation’s

differences in the issues for women offenders,

“We were very disappointed to see health barely

research team to explore these links and an

with domestic violence or self-harm causing

mentioned within the recent prison reform

independent evaluation of the programme will

more mild to moderate injuries which are less

plans published by the government – a missed

also be undertaken by Royal Holloway.

likely to get picked up.

opportunity and a false economy, given the

The service ends in spring next year, with the

The trust hopes the linkworker pilot at HMP

impact that issues such as brain injury can have

evaluation completed in the summer.

Drake will help identify these. Other issues

on offending.’’

MORE ON ABI AND PRISONS

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15

Whitehall urged to rethink prison brain injury approach

T

he government’s

their causes, such as acquired

and money management can be

savings that could be made by

recently proposed criminal

brain injury.

more challenging for prisoners

better handling of prison brain

justice reforms have missed

The group calls for clearer

with an undiagnosed, unsupported

injuries. It cites a Disabilities

the opportunity to tackle the

assessment of what brought an

brain injury.

Trust outcome study in which an

epidemic of brain injuries in prisons,

individual into the criminal

The group suggests a clear

estimated £80,000 saving was

an influential lobby has warned.

justice system in the first place.

treatment plan for each individual,

made by sending a prisoner to

The Criminal Justice Acquired

It also warns that, in terms of life

covering their transition to

brain injury rehab rather than

Brain Injury Interest Group

after release, there is no

the community and aftercare

prison – although it accepts

(CJABIIG) has slammed the

recognition in the report that

arrangements.

that this is not appropriate in

proposals for failing to address

tasks such as timekeeping, focus

It also points to the potential

every case.

the link between health problems

CJABIIG’s report says: “While

– such as brain injuries – and

the Prison Safety and Reform

offending behaviour.

Justice secretary Liz Truss unveiled a white paper in November detailing £1.3bn investment in new prisons over the next five years,

The proposals fall well short of providing a thorough and proactive solution for each issue

white paper addresses some fundamental changes necessary for improving the prison system, it is a missed opportunity on a number of levels. There

and plans for 2,100 extra officers,

is overwhelming evidence

more drug tests and autonomy

demonstrating that the health

for governors.

issues prisoners face, including

CJABIIG has now published its own

brain injury, have a significant and

report outlining the shortcomings

lasting effect on offending and

of the proposals and setting out

re-offending. It is disappointing

how the government should rethink

that the proposals fall well short

prison reforms to better factor in

of providing both a thorough and

brain injuries and other causes

proactive solution for each issue,

of neurodisability.

and a truly realisable blueprint

It warns that no reference is

for change.”

made in the government’s

The government was unavailable

report to screening for diagnosis

for comment within our deadlines.

of neurodisability, or to the

CJABIIG was formed in 2011 to

disproportionate rates of brain

raise awareness of the link

injury among offenders.

between offending behaviour and

Studies suggest the prevalence of

acquired brain injury in the criminal

traumatic brain injury could be

justice system.

as high as 60% in the adult

Founding members include

prison population.

Warwick and Essex universities,

While rising levels of violence and

St Andrew’s Healthcare, the

poor self-control are addressed in

Child Brain Injury Trust, the UK

the government report, CJABIIG

Acquired Brain Injury Forum and

says no thought has been given to

the Disabilities Trust.

16

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ONLINE:: Read the full CJABIIG report at nrtimes.co.uk

PROFILE

sponsored feature

New northern neuro-rehab centre open for admissions A new rehab centre has opened its doors in South Yorkshire for adults requiring care and treatment following traumatic or acquired brain injuries.

S

TEPS Rehabilitation, in Sheffield, is a 23bed facility designed to help residential and day visitors reach their full rehab

potential through intensive therapy from a team of specialists.

While all bedrooms are en-suite, the centre also features a Transitional Living Unit, a rehabilitation gym, stainless steel hydrotherapy pool, café and more. It is surrounded by gardens that allow therapy and relaxation to extend outside.

Beautiful landscaped areas will enable healing rehabilitation therapies outdoors

The £5m centre was purpose-built with design input from experienced clinicians and people who have been through the

feel as homely as possible to residents.

patients’ individual drive and desire and add

recovery and rehabilitation process

There is a variety of different social spaces

our commitment and care, we will achieve

personally, in order to create the optimal

for individuals in their care, as well as their

optimal results. We can offer patients the

environment for patients.

family and friends.

tools with which to push their own recovery

As a result, the facility is very spacious with

STEPS will also be opening up its centre to

to its pinnacle.”

plenty of natural light and a calm, homely feel.

local branches of charities such as Headway,

STEPS is currently on a recruitment drive

This is all housed under a green roof made

UKABIF and the Stroke Association, to provide

for 100 staff, including consultants, nurses,

up of wildflowers and plants.

a venue to host meetings and for their

therapists and catering staff.

With a covered outdoor rehab area directly

members to get involved with some of the

The company is working closely with a

off the gym, a green house and mature trees

activities on offer.

number of parties in Sheffield, including

outside, the STEPS team aim to tap into the

STEPS is an independent provider headed

Sheffield and Hallam universities, on research

growing body of evidence which suggests the

up by chairman Ray Boulger – a prominent

projects aimed at improving outcomes for

outdoors can promote faster healing.

figure in the financial services sector –

neuro-rehab patients.

Other features of the 26,000 sq ft site,

alongside his daughters Jules Leahy, who

which are at odds with the typical institutional

serves as the MD, and Toria Chan, clinical

style of healthcare facilities, include the

director. Its launch was supported by a

For referrals or admission enquiries contact

positioning of all bedrooms upstairs.

£490,000 Regional Growth Fund grant from

07895 804685 or visit

By having areas for care and social interaction

Sheffield City Council.

www.stepsrehabilitation.co.uk for more

downstairs, the centre has been built to

Mr Boulger said: “We know that if we harness

information.

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17

THERAPY

MAKING LIMITATIONS DISAPPEAR Magic therapy, and its dramatic impact on young lives with a debilitating condition, is no cheap trick. As Andrew Mernin discovers, it could also play a bigger role in neuro-rehab in the future

18

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19

THERAPY

Hemiplegia makes daily tasks more difficult

L Currently there is no NHS-wide access to intensive bimanual motor therapy

20

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ike the great Houdini himself, the

one side of the body, caused by an injury to

magic therapists have pulled off the

the brain.

seemingly impossible.

Mastering puzzles like shoelaces, buttons and

Not only have they solved the riddle of

zips are the minor victories that set children

treating a debilitating condition in children;

on the path towards independence. For some

they’ve done so through the prism of tight

young people with hemiplegia, however, such

healthcare budgets.

fine motor skills present huge challenges. And

Their solution involves no expensive technology

failure to overcome them can cause far more

or drug trials and, since it is effective in group

damage than mere day-to-day frustration.

sessions, makes maximum use of human

Poor self-esteem, a negative self-image and an

resources. Yet the results it achieves in young

aversion to social situations are just some of the

people are no illusion, as shown through

spiralling associated problems. Rebecca says:

extensive published and peer-reviewed evidence.

“Children struggling with buttons and other such

“It’s a very unusual job in that I have meetings

tasks are generally very reliant on their parents

with magic circle magicians,” says Rebecca

or others around them, like teaching assistants.

Johnson, clinical lead at the social enterprise,

Bimanual therapy is a process for learning two-

Breathe Arts Health Research. “They show me

handed skills independently through repetition

different tricks and we carefully select the ones

of carefully chosen, goal-specific activities; or in

we need,” she adds.

our case, magic tricks. It’s active learning with an

Breathe has been pioneering magic therapy

intensity and repetition.”

in the UK and elsewhere in recent years. It is

The concept behind the Breathe Magic

largely used in the treatment of children with

Programme was conjured up by a team of

hemiplegia, a weakness or paralysis affecting

occupational therapists and staff at the Guy's

THERAPY

Magic therapy helps young people learn vital new life skills

and St Thomas' charity, alongside David Owen, who leads a double life as a magician and QC. The one-time Young Magician of the Year was interested in magic’s communicative and meditative qualities. Perhaps his mother’s career as a nurse and father’s as a surgeon also instilled a desire to help people.

He took the idea for magic as therapy to various charities alongside fellow magician Richard McDougall. After numerous knockbacks, Breathe’s MD Yvonne Farquharson collaborated with them and others who had helped to develop it, and the programme was born.

Breathe Magic involves special occupational therapists working with magicians to teach tricks which develop hand and arm function, cognitive ability, self-confidence and independence. Young mentors who previously completed the programme may also be on hand to help the children. The 78-hour programme is delivered over a fortnight, followed by monthly therapy sessions and clinical assessments.

As with other emerging therapies, practitioners

This may lead to frustration. With magic,

In one study, the affected hand was reported to

face the challenge of evidencing its value – and

certain tricks will not work unless each

be used in 72% of bimanual activities before a

banishing misconceptions. Rebecca says:

hand plays its important part. Breathe

magic therapy camp. This progressed to 93%

“People initially say ‘ooh magic, that’s nice’,

estimates that at least 65% of young people

after the camp, decreasing to 86% at follow-

but we are actually embedded in research.

with hemiplegia could benefit from intensive

up. Neither age nor severity of impairment

We lead on very strong data which guides

motor therapy. Around 44% of young

influenced progress. A separate, independent

our programmes. This means we’re always

hemiplegics also suffer from psychosocial

study in 2015 provided the first evidence of

adapting, but also that our outcomes are

morbidity, the organisation says. Yet currently

brain plasticity in hemiplegia after bimanual

dramatic. It’s a very tight, scientifically-based

there is no NHS-wide access to intensive

intervention. Neuroimaging showed a 26.14%

programme, that’s also very exciting.”

bimanual motor therapy. This is despite it being

increase in the level of activation in the affected

Breathe’s approach to hemiplegia is based

advocated in a recent systematic review (Novak

hemisphere following the intervention – and a

on one of NICE's recommended protocols,

et al., 2013) and in NICE guidelines (2012).

34.75% rise at follow-up. There are also several

hand-arm bimanual intensive training

Research shows that Breathe’s approach leads

less scientifically tangible – but no less valuable

(HABIT). Adding a twist of magic avoids certain

to better and more spontaneous hand use, and

– improvements too.

weaknesses of HABIT, however. When HABIT

greater independence in bimanual activities.

“We see a lot of really positive transference as

is applied through the use of toys or games, for

Speed in the grasp and release of items has

well,” says Rebecca. “Parents have reported that

example, children may over-rely on their strong

been shown to quicken by over two minutes

their children are more confident, their problem

hand. Only verbal cues from the therapist will

across various tasks. Such improvements are

solving has improved and they are approaching

remind them to revert to their assisting hand.

maintained at three-month follow-ups.

everything with new vigour.”

Parents say their children are more confident, their problem solving has improved and they are approaching everything with new vigour NRTIMES

21

THERAPY

Our aim is to make magic therapy more accessible, less of a new and innovative thing and put it firmly into the mainstream Magic therapy is such a powerful potion against hemiplegia for a number of reasons.

Firstly, it makes any apathy children may feel towards high-intensity practice disappear.

Without the thrill of magic, it can be notoriously hard to motivate young people to engage in repetitive tasks such as those involved in HABIT. Their determination is driven by clear goals – to not only learn impressive new tricks to show their friends, but to also perform them on stage at the end of their sessions. The sleight of hand on the part of the therapists is that participants also vitally improve their motor functions and, in many cases, gain a more positive self-image.

Breathe Magic has proven success with severe hemiplegia cases, refuting previous clinical claims that HABIT is only applicable to mild cases. It also works in group settings – which should make it an attractive proposition to decision-makers in the cash-strapped NHS. Reducing the amount of care needed for individual children also provides indirect resource savings. To date in the UK, Breathe’s magic therapy has been commissioned by a handful of CCGs, including Lambeth and Wandsworth, with which the group has service level agreements. Breathe now aims to spread its reach elsewhere in the UK. “Our aim is to make magic therapy more accessible, less of a new, innovative thing and put it firmly into the mainstream,” says Rebecca.

Efforts are also underway to apply magic therapy to other conditions beyond hemiplegia.

Pilot studies, including one at Great Ormond Street Hospital, have explored the benefits of Breathe Magic to children’s mental health. Its use in relation to stroke in adults is also being investigated. With more research currently underway, Breathe may have yet more up its sleeve, as Rebecca says: “We’re on a mission to spread the word about how powerful magic

Hemiplegia explained Hemiplegia is caused by damage to the brain, which may occur before or during birth or be acquired through a brain injury or stroke in childhood. Sometimes the condition will only become clear as a baby gets older and perhaps has trouble walking. An injury to the right side of the brain will cause weakness or paralysis on the left side of the body and vice versa. The condition is slightly more common in premature babies and, overall, affects one in 1,300 births. The condition can vary in severity and affects each child differently.

Symptoms include walking difficulties, poor balance and little or no use of one hand or

therapy can be for people that haven’t had

leg. Because of its impact on the brain, other associated symptoms can include speech,

access to the programme.”

visual and behavioural problems, learning difficulties, epilepsy and developmental delay.

22

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INSIGHT

Poor awareness of brain injury in schools is setting many young people up for a life of struggle, limited opportunities and even prison. Andrew Mernin finds out how one organisation is turning the tide by educating the educators.

EXCLUSION 24

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INSIGHT

B

ZONE

ullying, detention and trips to the head’s office could all be signs that a school pupil has a brain injury. Others include falling grades, poor concentration and messing around in class.

By spotting these red flags and taking action, teachers can avert a downward spiral that all too often ends in the criminal justice system.

Rates of traumatic brain injury (TBI) in young people in custody range from 65 to 76%, compared to the general population of between 5 to 24%.

A 2010 study of incarcerated young offenders in the UK aged between 16 and 18, meanwhile, found that 65.1% reported a TBI that left them feeling ‘dazed and confused’.

As well as the lobby for criminal justice reforms to better handle brain injuries, campaigning of the education system is also underway.

Schools are being urged to improve their ability to identify brain injuries in children and make valuable interventions.

By doing so, they could positively change the outlook of young people on track for a life of limited opportunities or even behind bars.

Spreading the word among teachers is an uphill struggle, however, according to Louise Wilkinson, of the Child Brain Injury Trust (CBIT).

As the trust’s information and learning manager, she is charged with switching educators on to the signs of childhood brain injuries.

But apathy, misconceptions and overly officious school gatekeepers are common barriers in her quest.

The trust offers free workshops to educational professionals, showing them how to better recognise and support children with acquired brain injury (ABI).

Yet the response rate is extremely low. She recently sent a request to about 4,000 schools for attendees at an upcoming course, for example. Ten schools replied.

“You don’t know what you don’t know,” she says.

“The frontline person who gets our email may delete it, assuming it’s irrelevant as they don’t have any kids with brain injuries. Unless they know of a child who’s had meningitis or been in an accident, they think it’s not for them.

Unless schools know of a child that's been in an accident they think it's not for them NRTIMES

25

INSIGHT

ABI IN NUMBERS (Source - 2013/14 NHS Standard Contract For paediatric neurosciences: neurorehabilitation)

Louise Wilkinson of CBIT “With the teachers that do come along, it’s like watching lightbulbs being switched on.

Often they’ve worked with a child with learning difficulties that they just couldn’t put their finger on what the diagnosis should be. Sometimes they go back to work with a list of children whose backgrounds they intend to look into.”

Teachers trained to recognise brain injury signs face the challenge of distinguishing them from other conditions. ADHD and autistic spectrum disorder (ASD) share lots of common ground with brain injuries; although TBI is around 30 times more common in young people statistically than those two conditions.

In young people in the general population, the rate of TBI – which excludes brain injury caused by illness (meningitis, epilepsy and measles), stroke, tumours, poisoning and lack of oxygen – is 24 to 31.6% (McKInley et al, 2008; Mcguire et al, 1998). This compares to 0.6 to 1.2% for autistic spectrum disorder and 1.7 to 9% for ADHD, CBIT says.

“There could be hundreds or even thousands of children that have been diagnosed with ADHD whose difficulties are actually as a result of an ABI,” Louise says.

“There are so many signs that are similar, and so many common areas of difficulties, but there are also some subtle differences.

If professionals don’t know them, the child is probably not going to get the correct diagnosis.

“Children on the autistic spectrum can be obsessive and compulsive – and there may be 26

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35,000

The total number of children admitted to hospital for Traumatic Brain Injury (TBI) per annum in the UK. Of these, approximately: will have sustained severe TBI

will have sustained moderate TBI, and

will have sustained mild TBI

no grey areas. Everything is black or white.

They might also have difficulties with social skills and be awkward around people. But equally they might be very intelligent.

“Children with a brain injury may show similar signs. If they have frontal lobe damage they too may have difficulties with social interaction, understanding things and perception. A difference is that they may also have memory problems, whereas autistic children typically have very good memories.”

Unlike brain injury, conditions like ADHD and ASD are embedded in the training teaching professionals undergo, Louise believes.

ADHD’s higher profile in education circles is perhaps due to its regular media attention

and the way diagnosis levels have exploded in the modern age. Drug controversies, discrimination cases and classification changes have helped to keep the condition in the public eye in recent decades, certainly more so than childhood TBI. Annual prescriptions in the UK for ADHD medications such as Ritalin more than doubled from 359,100 in 2004 to 922,200 in 2014. In the US, ADHD is now the second most frequent long-term diagnosis made in children, behind asthma.

Even among educational psychologists, training on identifying the fallout from brain injuries is poor. “In a two or three-year course, they tend to only have an hour or two

INSIGHT

NEURODEVELOPMENTAL DISORDER Reported prevalence rates amongst young people in the general population.

Autistic spectrum disorder

0.6 - 1.2%

Attention deficit hyperactive disorder Learning disabilities Dyslexia

1.7 - 9%

2 - 4%

10%

Traumatic brain injury1 1 2

24 - 31.6%2

TBI excludes brain injury acquired a a result of illness (meningitis, epilepsy or measles), tumours, strokes, poisoning, and lack of oxygen McKinley et al, 2008; McGuire et al, 1998. Data Source - "Nobody made the connection" Report for Children's' Commissioner October 2012

focusing on brain injuries,” says Louise.

The impact of adolescence on young people’s behaviour also makes it difficult for school staff to recognise signs of brain injury. In these formative teenage years, long-forgotten childhood accidents can also re-emerge in the form of ABI-related problems.

“When children have accidents when they are little, parents are often told they’ve made a full recovery. However, maturation of the brain isn’t complete until a person is in their early to mid-20s. So sometimes things that are supposed to start working in adolescence suddenly don’t and issues are flagged up only then, years after the initial brain injury.

“If you bought a brand-new computer, but

didn’t use a certain programme until six months later, you wouldn’t know whether or not that programme worked until then.

“We see particular problems when kids make the transition from key stages two to three [at age 11]. They’ve been going to the same classroom, sitting in the same chair, being taught by the same teacher every day. They know where the scrap paper is kept, and so on. Suddenly, at key stage three, they have lots of different teachers and lessons and have to navigate their way around school.

They also have to remember what to take to school each day.

“The child who was fantastic in primary school and coped really well, suddenly has

a high possibility of struggling with their organisational and planning skills, if they have a known or unknown brain injury.”

This change in circumstance can quickly develop into a downward slide in their performance at school.

“They end up wandering the corridors aimlessly. They can’t get their homework in on time. They get sent to detention and get admonished, but it’s not their fault. They are trying just as hard as they’ve always tried but everyone’s on their case. Then they start thinking ‘I might as well not bother’ and start playing up as no-one’s supporting them and it’s easier to get thrown out of the classroom.

Eventually the school says they can’t cope

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27

INSIGHT

I couldn't do it so I would just mess about

with their behaviour and they get excluded.”

One young person quoted in a 2012 Children’s Commissioner’s report on neurodisability and young offenders, explained this frustrating experience: “I wasn’t able to concentrate…I got distracted easily…Then they just send you out and keep sending you out and sending you out and then you end up being sent home and then you get suspended.”

A fellow member of the same focus group said: “I went to junior school, I couldn’t read or write and they just gave me work I couldn't do, telling me to do it, and I couldn’t do it, so instead of doing it I would just mess about.”

Another said: “My mum tried to get help but everyone said no. That left her with just me, not in school.”

From there, life can sink even deeper for some teenagers, with an inevitable slip towards petty crime and then more serious criminality.

And whether they are in education or institutional rehabilitation the same problems can persist, plunging them into more trouble.

According to the Prison Reform Trust, a person with learning difficulties and disabilities can struggle to understand and adjust to rules and can become deemed a disruptive force.

Stopping this sad school-to-prison scenario 28

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from playing out up and down the country is an important part of CBIT’s work. As well as its continual programme of education for teachers, the group supports parents in getting children with brain injuries the extra help they may need at school.

Louise is motivated by personal experience.

Her own son, now grown up, had difficulties at school and was initially dismissed as a naughty child. He was eventually diagnosed with ADHD but it wasn’t until Louise was

immersed in the world of childhood brain injuries with CBIT that she remembered her son’s accident.

He fell off a wall onto a concrete path at age two, throwing up afterwards, indicating concussion. He was observed for 24 hours and then it was assumed he had recovered.

Louise is unsure that his difficulties were connected to this rather than ADHD, but is certain that such experiences show the need for more transparency around

INSIGHT

Top marks for ABI awareness If Louise Wilkinson could design a school from scratch to handle childhood brain injuries in exactly the right way, it might look something like Greensward Academy in Essex.

It has been outlined by the Child Brain Injury Trust as a shining example of ABI-friendly education.

Samuel Mothersole (pictured), director of inclusion (SENDCo) at the school, says: “Young people with brain injuries can present, in schools, with some of the most complex behaviours and high levels of need. Increased recognition of this fact is imperative to improve our knowledge and our response to the challenges these young people face.

“Greater awareness will allow these young people to thrive in our schools as we are more able to understand, plan and provide for their individual requirements.”

Greenward’s approach to ABI includes close attention to the transitional period between key stages (KS) two and three, at age 11.

KS3 staff undergo ABI-awareness training, while KS2 learning support assistants visit KS3 to observe children in their new environment. Older pupils are also assigned as ‘buddies’ during taster days for children making the step up.

Other support measures in KS3 include use of visual timetables, access to lunchtime sessions on art therapy - to encourage creative communication – and social scenario role-playing, covering issues like bullying. There are also extra-curricular handwriting/fine motor skills sessions disguised as other motor skills activities. A rich programme of after-school clubs is also accessible to all, including children with ABI. Learning support assistants and SEN team members provide additional help in lessons, without encouraging over-reliance or causing attachment issues.

The school also caters for adapted timetables, where appropriate, and sensory time/chill-out sessions for small groups of children.

Early lunches are permitted and drinks and snacks are encouraged at all times to avoid fatigue issues.

Other steps include open communication with parents and, if any problems arise, parents can talk directly to their child if required.

children’s medical histories.

“We have a red book here in the UK that details a child’s medical history for the parents. But, unlike in other parts of the world such as Canada, the book is not used by the school system. It should be passed right the way through from primary to secondary education.”

Another systematic problem in the UK is the importance weighted on results, sometimes to the detriment of individual children.

“When you have a school that is very pupilfocused, they will move heaven and earth to support that child. We get very good results in those schools.

“Where you have a school that’s more concerned about their report from [government watchdog] Ofsted, they don’t want a failing pupil. They will not necessarily be as accommodating as other schools with requests for support and the child may end up changing schools.”

Tackling issues so ingrained in the education system is a tough ask for CBIT and its team of around 30. It hopes that by engaging more closely this year with local government, it will be able to exert more influence. It plans to carry out some “structured work” in one particular region of the country, working with a handful of education authorities.

See future issues of NR Times for an update on its success or otherwise.

NRTIMES 29

PROFILE

sponsored feature

Pathway profile: St Andrew’s Healthcare

We are constantly adapting and tailoring our treatments to help patients live a full life

An insight into neuropsychiatric services at the country’s largest mental health facility

town centre, is home to the largest mental

others, we manage those cases that are the

health facility in the country and a national

most complex in terms of risk, challenging

epicentre for neuropsychiatric care.

behaviour and multimorbidity. If patients

St Andrew’s offers specialist neuropsychiatric

are displaying a high level of behavioural

T

services for patients with acquired brain

disturbance, they need a specialist team to

he vast grounds of St Andrew’s

injury, stroke, complex dementia and

support them, plus the environment to manage

Healthcare have elements of an idyllic,

Huntington’s disease, alongside their multiple

risk, especially if they are showing extreme

English village.

physical morbidities.

physical aggression. St Andrew’s is one of the

There’s a grand old church, tree-lined lanes and,

Care is available for men and women

few places in the country that can provide

on a fair day, games of croquet playing out on

in medium secure through to community-facing

these things.

the lawn. But this is no rural backwater.

living environments.

“We are constantly adapting and tailoring

The 140-acre campus just outside Northampton

Hospital director Helen Stokes says: “Amongst

treatments to help patients live a full life

30

NRTIMES

PROFILE

with the least restriction and will move people

community setting closer to home.

“All of these different elements enable us

through our pathway as smoothly and quickly

In addition, over 65 patients transitioned

to manage behaviour and address both the

as possible.”

through the pathway within NPS to lower

physical and psychiatric difficulties being

St Andrew’s offers level one and two specialist

levels of security. Continual investment in

experienced,” says Dr Kamath. “There is a real

rehabilitation treatment typically not

staff training is a significant factor in these

emphasis on people not staying in hospital for

available to patients in their local areas. The

positive outcomes. Almost 200 NPS staff

any longer than they possibly need to.

neuropsychiatry service (NPS) is a vital part of

are qualified across the principles of RAID

"But equally, some patients will always present

that. There are over 200 beds available within

(Reinforce, Appropriate, Implode, Disruptive),

with a high level of disturbance which requires

the NPS pathway, ranging from admission

a relentlessly positive philosophy for working

a bespoke wraparound package that we can

units to bespoke individual placements, and a

with extreme behaviour. St Andrew’s also

provide,” she adds.

range of therapeutic options to help patients

developed the globally recognised neuro-

A crucial strand of the NPS pathway is a

build towards independence and community

behavioural assessment tools SASBA, SASNOS

support group for relatives run by clinicians and

re-integration where possible, or to offer the

and OAS-MNR, which are used alongside core

backed up by on-site family accommodation.

greatest quality of life for people requiring

measurements of cognitive function and physical

Last year St Andrew’s was named Mental

palliative care.

health, and incorporated into Positive Behaviour

Health Hospital of the Year at the Laing

A rapid response service for people in crisis also

Plans (PBS) for each patient.

Buisson awards.

brings patients to Northampton from across the

Behavioural, cognitive and functional therapeutic

country, when their highly agitated presentation

streams are combined by the extensive

may have proved too demanding at their existing

multidisciplinary teams, including a psychology

acute or community setting. Patients arriving at

department of 14 and nine psychiatrists,

St Andrew’s will often have been detained under

with four specialist neuropsychiatrists. Each

the Mental Health Act or on a Deprivation of

neuropsychiatry ward also has dedicated

Liberty Safeguard Order (DoLS), although NPS

physiotherapists, occupational therapists,

also accepts informal patients.

advanced nurse practitioners and assistant

Clinical director Dr Vishelle Kamath says: “The

practitioners, technical instructors, speech and

first thing we do when clients come to us is

language therapists and dieticians.

rationalise their medication. By the time the

There is even a dedicated dysphagia kitchen,

patient reaches us they might have been in the

offering a wide choice of graded foods for

hands of many different professionals, so it is

patients who have difficulty in swallowing, and

important to establish an accurate baseline

helping St Andrew’s to win the 2016 Healthcare

of each patient’s current needs, and develop a

Caterer of the Year award.

tailored care plan to promote their recovery.

There is also a strong emphasis on vocational,

“It’s about making sure the right treatment is

social and spiritual wellbeing, with 350 patients

delivered at the right time by the right people.

from St Andrew’s, local charities and other

We strive to build on the patient’s recovery

providers accessing Workbridge services

day by day, continually improving their

last year.

quality of life, levels of engagement and

Recreational opportunities are abundant too,

rehabilitation outcomes.”

thanks to a wide selection of available activities,

Last year, 204 patients were cared for in the

supported by two swimming pools and a

St Andrew’s NPS pathway, with 69% of

gym, and the expansive landscaped grounds.

discharged patients moving to less restriction

Chaplaincy and spirituality services

within a locked environment, or on to a

are also offered.

69%

of discharged patients moved to less restriction within a locked environment, or on to a community setting closer to home.

Patient perspective Tom, whose real name has been withheld, came to St Andrew’s after years of anxiety, depression and alcohol problems. Here he shares his journey so far…

“My memory was terrible when I came here but I started on a structured programme and was given help to understand my problem with alcohol and also learned coping skills. I have now moved to the next level and am doing active rehabilitation. I do gym five times a week, go to the activity centre and have been learning woodwork and packaging at the vocational centre. I have also been cooking. Staff on the ward have been helping me to improve my memory.

Coming here has really helped me and it’s been a positive change for my family too.”

NRTIMES

31

INTERVIEW

ON THE TRAIL OF THE NEURONE KILLER The net is closing in on a deadly force in the brain and spinal cord, thanks to scientists led

by Dr Shane Liddelow.

Andrew Mernin joined him on the hunt to find out what the implications could be for neuro-rehab.

D

eep in the inner galaxy of the central nervous system, a rogue power wreaks havoc.

It appears when disasters occur and carries out

deadly disruption.

It's opened up new possibilities for future treatments of trauma and neurodegenerative diseases

It is known simply as ‘A1’ and its origin has been shrouded in mystery throughout the modern era of medical science.

Until this year, that is, when a small army of whitecoats made a major advance.

They concluded that this star-shaped menace – a ‘helper’ cell, or astrocyte, gone bad - may be contributing to damage caused by brain injury and disease.

Their new report has given greater clarity on why and how the A1 astrocyte turns toxic and destroys neurones.

32

NRTIMES

INTERVIEW

found in the cell walls of bacteria; but neither their function or origin could be explained.

Dr Shane Liddelow

Scientists have now answered both questions – and are hopeful their work will catalyse new treatments for neurological disorders.

Lead author Dr Shane Liddelow, of the department of pharmacology and therapeutics at Melbourne University, and the department of neurobiology at Stanford University, says: “For too long, academic and pharmaceutical science has focused heavily on the neuronal side of neurodegeneration. The glia side has been largely ignored, partly because of a lack of knowledge and also because we’ve not had the technology to explore it. As a result, none of the treatments for such conditions have been particularly powerful. None have stopped disease or, indeed, the devastating impact of a trauma.

“Astrocytes make up 60 to 70% of cells in the brain, so it just seems like such low hanging fruit if we can target them instead of neurones.

For the first time, we might be able to treat these diseases and traumatic injuries.

“Preliminary evidence says, if we modulate just the reactivity of astrocytes, we can stop neurones dying and help synapses to form. This could be hugely important in the context of regeneration and recovery. All of the planets are essentially aligning and we are now ramping up experiments to find a treatable avenue.”

His study, published in Nature, showed that A1 astrocytes lose the ability to promote neuronal survival, and induce the death of neurones

It has also opened up new possibilities for

and shaping the connections between them.

and oligodendrocytes (which also support

future treatments of trauma injuries and

It’s also known that traumatic brain injury,

neurones). Liddelow also discovered that the

neurodegenerative diseases.

stroke, infection and disease can transform

protein secreted by A1s is toxic to neurones but

Announcing the news to the world, Standford

benign ‘resting’ astrocytes into reactive ones

not other cells in the brain. In the spinal cord, it

University’s Ben Barres declared: “Astrocytes

with different behaviours.

only kills certain motor-neurones.

aren’t always the good guys. An aberrant

In 2012 two distinct types of reactive astrocytes

“We are getting very close to characterising

version of them turns up in suspicious

were identified; A1 and A2.

exactly what that toxin is. That will enable us

abundance in the wrong places.”

A2s are induced by oxygen deprivation in the

to find an antibody that could at least stop

Astrocytes are non-neuronal ‘glia’ cells in

brain, which occurs during stroke. They produce

neurones being killed.”

the central nervous system, outnumbering

substances supporting neurone growth, health

The research also found that the death of

neurones five to one. It was long believed that

and survival near the stroke site.

neurones in vivo was prevented when the

they merely served as structural support for

A1s, on the other hand, are primed to produce

formation of A1 was blocked. Even if such a

neurones. More recently it was discovered they

pro-inflammatory substances. They were

treatment could be applied safely in humans,

vitally help neurones, enhancing their survival

observed in the presence of LPS, a component

however, doctors would have a limited window

NRTIMES 33

INTERVIEW

Dr Liddelow's work could have huge implications for research into Alzheimer's

34

NRTIMES

INTERVIEW

of opportunity to use it. Research suggest that A1 astrocytes are formed in the immediate aftermath of a trauma.

If we can stop neurones dying, can we then regenerate them? Can we return lost abilities?

A more exciting prospect would be a treatment that could deactivate A1 astrocytes.

This could have huge implications for diseases such as Alzheimer’s, Huntington’s,

using pharmaceutical agents.”

in the US by the FDA but we would have to

Parkinson’s, amyotrophic lateral sclerosis and

Reactive A2 astrocytes are the main cellular

change the treatment paradigm as some are not

multiple sclerosis.

component in glial scarring, aiding the healing

used in the context of neurodegeneration.

Researchers found A1s in abundance in every

process in the central nervous system. The

“The next step in the longer term would be to

one of these conditions, as well as in brain and

challenge facing Liddelow and his colleagues is

see, if we can stop neurones dying, can we then

spinal injury cases. Liddelow hopes to

activating and deactivating A1s without affecting

regenerate them? Could we bring about a return

eventually translate positive initial lab tests into

A2s, since too much or too little scarring could

of lost abilities like motor functions, bladder

clinical trials.

be detrimental to the healing process.

control and sexual function?

“We’ve been able to grow pure astrocytes

“We can be very targeted with culture dish

"I couldn’t put a timescale on it, but we’re

in a Petri dish, uncontaminated by other

experiments, which are fantastic for looking

definitely optimistic.”

cells. The most surprising thing about the

at mechanisms, but are not always

With new in vivo studies currently underway,

study is that we can flick a switch that

biologically relevant.

NR Times hopes to report on further progress

makes them reactive or non-reactive,

“A lot of the drugs involved are already approved

in this field later this year.

The BIRT Conference 2017 #BIRT2017

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www.birt.co.uk

NRTIMES 35

LEGAL

The code that opens doors to recovery

The role of solicitors in neuro-rehab is changing for the better thanks to updates to the Rehabilitation Code, writes Mark Quigley.

When an individual acquires a brain injury

practice advice from organisations such

through the fault or negligence of another,

as the British Association of Brain Injury

it is incumbent on the solicitor representing

Case Managers (BABICM) and the Case

the claimant to consider, at the earliest

Management Society UK (CMSUK).

opportunity, how best to improve the

The code encourages parties to the

claimant’s present and long term physical

litigation to seek to agree the selection of

and mental wellbeing.

an appropriate qualified independent case

Since 1999, legal practitioners who are

manager who is best suited to address the

involved in claims on behalf of those

claimant’s needs.

catastrophically injured should have regard

The duty of a case manager is to the

to the provisions of the Rehabilitation Code.

injured person.

The latest version of the code was published

The nature of the relationship with the

in 2015.

claimant is therapeutic.

It places an obligation on the claimant

The case manager is not part of the

solicitor to have an initial discussion with

litigation team. The INA and all aspects of

the claimant and/or their family to identify

interventions and treatment delivered

whether there is an immediate need for

under the terms of the code sit entirely

assistance in relation to matters such as aids

outside of the litigation process.

and adaptations.

Consistent with this principle, the INA

Where such a need exists then the code

report should not deal with issues relating

provides a mechanism whereby the claimant

to legal responsibility.

solicitor can engage with the compensator

When undertaking an INA the case

(such as an insurance company) in order to

manager is required, under the terms of

consider how best to address these needs.

the code, to have regard to ten “markers”

The code promotes the collaborative use of

when assessing an injured person’s

rehabilitation and early intervention in the

rehabilitation needs.

compensation process.

Mark Quigley, Sintons LLP

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NRTIMES

Its purpose is to help the injured claimant

These are as follows:

make the best and quickest possible medical,

1. Age (particularly children/elderly)

social, vocational and psychological recovery.

2. Pre-existing physical and psycho – social

Precisely what form any rehabilitation may

commodities

take needs to be determined in light of an

3. Return to work/education issues

assessment process undertaken by a suitably

4. Dependents living at home

competent and qualified individual.

5. Geographic location

The code provides for an Immediate Needs

6. Mental capacity

Assessment (INA) to be undertaken by a

7. Activities of daily living in the short and

case manager. Care should be taken to

long term

ensure that the case manager instructed to

8. Realistic goals, aspirations, attainment

undertaken the INA in a case involving an

9. Fatalities/those who witness major

individual with an acquired brain injury

incidents of trauma within the same accident

meets the ethical standards and best

10. Length of time post-accident

LEGAL

Early intervention can have a profound impact on the quality of life of a catastrophically injured person

In addition, the INA should give careful

A case manager will also look at the impact

Once the case manager has made

consideration to the physical and psychological

upon the claimant’s domestic and social

recommendations, the compensator should

injuries sustained by the claimant and

circumstances, covering issues such as

give immediate consideration as to whether

subsequent care received or planned. The case

mobility, accommodation and employment,

or not they are prepared to provide funding to

manager should ensure that contact is made

and give consideration as to what type of

enable the recommendations to

with the treating care professionals in order

therapeutic input would be beneficial. Where

be implemented.

to gain a full understanding of the claimant’s

the case manager makes recommendations

Without question, early intervention by

condition. This in turn involves consideration

for early intervention then the likely cost and

an experienced case manager leading a

of the availability or planned delivery of

duration of any proposals for treatment or

therapeutic team can have a profound impact

interventions or treatment via the NHS or

other measures should be set out in the

on the quality of life of a catastrophically injured

other providers such as an employer or health

INA together with their goals, duration and

person. A solicitor has a duty to act in the best

insurance scheme.

anticipated outcomes.

interests of their client. Those who act on behalf

It is important to bear in mind that the purpose

Goal setting should follow the principles of

of claimants with an acquired brain injury must

of a claim for damages is to put the injured

SMART - namely be specific, measurable,

not lose sight of the fact that this does not

person in the same position they would have

achievable, realistic and time bound.

always equate to maximising damages;

been in had they not sustained injury as a

Compensators should not refuse rehabilitation

maximising life chances for the injured person

result of the negligence of another person. It is

unreasonably. The code imposes a duty on the

is more important.

well established law that an injured claimant

compensator, from the earliest practicable

is entitled to have not merely the cheapest

stage, to consider whether the claimant

rehabilitation but rather the rehabilitation they

would benefit from any additional medical

Mark Quigley is managing partner and a

reasonably need so that their lifestyle can be

or rehabilitative treatment and to work

catastrophic injury lawyer at Sintons LLP.

enhanced with a view to restoring it, so far as

collaboratively with the claimant’s solicitor on

mark.quigley@sintons.co.uk

possible, to its pre-accident state.

how best to address those needs.

www.sintons.co.uk

NRTIMES

37

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O NE PU AL NC H L IT IS TA KE S

INTERVIEW

A flash of violence, fuelled by anger, adrenaline and often alcohol, can destroy a life in seconds. One punch attacks are a violent epidemic increasingly bringing people to the doors of neuro-rehab professionals. Peter Jackson meets one mother who's fighting back.

A

man who killed a young banker with

When Maxine reached the hospital, a consultant

a single punch in a "senseless" and

took her aside to tell her that Kristian had

"unprovoked" attack was jailed for six

sustained a blow to the head, was on a life

years in February.

support machine and had no brain activity.

This brought to the public’s attention the

Kristian was then transferred to Newcastle’s RVI,

potentially devastating consequences that such

but, before he made the journey, Maxine was

so-called `one punch attacks’ can have.

allowed to see him.

Trevor Timon, 31, hit Oliver Dearlove while he and

She recalls: “I went in and he was all tubed up. He

his friends were talking to a group of women in

was unrecognisable. Even to this day it beggars

Blackheath, London, in August 2016, punching

belief that a punch can cause so much damage.’’

him in the side of the head sending him to the

Surgeons at the RVI operated on Kristian.

ground and knocking him out.

“I was told they held very little hope for Kristian’s

Mr Dearlove, 30, died hours after the attack,

survival and that if he did survive he would be

which happened after he struck up a friendly chat

severely mentally and physically disabled. It was

with the women, who had been out celebrating a

pure hell,’’ says Maxine.

birthday with Timon.

The swelling returned and a second operation

Timon admitted manslaughter but was cleared

was necessary to remove part of Kristian’s

of murder at the Old Bailey.

frontal lobe. Maxine had her son baptized on the

The anguish of Oliver Dearlove’s family and

Thursday and on the Friday morning – almost a

girlfriend will have been only too horribly familiar

week after he had gone out to pick up his friends

to Maxine Thompson-Curl, who lost her own son

– the doctors told her that they were considering

Kristian in 2011.

switching off his life support, and she was

“Kristian was a good lad,’’ she says. “He was a

introduced to the organ donation team.

footballer and a cricketer, he was very popular,

On that Friday morning, Maxine went into

he had a girlfriend, was just going on to do an

Kristian’s room.

electronics engineering apprenticeship; he had

“He had a tear dripping down his face. I wiped the

a nice life.’’

tear and he looked at me and smiled and said,

That life was shattered on Friday September

`mum’. It was miraculous. The consultant said he

3 2010 when Kristian, 18, went to pick up

couldn’t believe it.’’

some friends from a nightclub in Consett,

Kristian came out of his comatose state, was

County Durham.

moved to a high dependency unit and showed

Maxine received a phone call at 1.45am to tell

signs of remarkable recovery.

her that her son was in an ambulance on his way

“He was okay and then there was a massive

to Dryburn Hospital, now University Hospital of

change in personality,’’ recalls Maxine. “He had

North Durham.

no inhibitions and his behaviour was very

He had been attacked in the nightclub toilets by a

erratic but I was told that over time that would

man who later received a 28-month jail sentence

settle down.’’

for grievous bodily harm.

In December Kristian was sectioned and moved

NRTIMES 39

Maxine Thompson-Curl and her husband Tony

40

NRTIMES

INTERVIEW

into a mental health unit. He was later moved

or a life-changing injury.

She describes how the charity is working with

to a specialist unit in Northamptonshire where

Help is not only needed by those bereaved by a

one young man who has learned to walk again

he died on January 10, 2011. A subsequent inquest

one punch assault but also – all too often – by

but who still struggles with his speech. The only

into Kristian’s death returned an open verdict.

those who survive, along with their families.

speech therapy he receives on the NHS is 30

Maxine and her husband Tony Curl have set up a

Maxine explains: “In the case of a death you have

minutes every two weeks. Meanwhile, funding

charity, One Punch North East, to offer a drop-in

family and friends trying to cope with it and those

for other rehab is strained, since criminal injuries

advice and counselling service to families whose

people need help and support. Those people with

compensation can take two and half to three

loved ones have been victims of violent attacks.

a loved one who survives but will never be

years to be paid, beyond the window in which

It was launched in 2015 on what would have been

the same.’’

therapy can be at its most effective.

Kristian’s 23rd birthday. It has acquired a new

She adds: “I had very little support from

Maxine is also providing help to one Tyneside

office and drop-in centre in Sunderland.

anywhere when I was going through everything

mother whose son was in a coma in nearby

“I’ve put all the energy and passion I’ve got into

with Kristian.

Sunderland but who couldn’t afford the fares to

the One Punch campaign,’’ says Maxine.

"I wanted to help others and County Durham

visit him. One Punch North East has stepped in,

“I decided I had to let people know what one

Alcohol Harm Reduction Team and Durham

offering funds and transport.

punch can do. I never really knew before what

Constabulary contacted me about helping with

One Punch North East works closely with local

happened to my Kristian."

an awareness campaign and that’s how

pubs and clubs and primary care trusts.

It is a significant problem. There are no official

it started.’’

It also plans to work in partnership with the

figures on one punch deaths, but the national

She now visits schools, probation homes, prisons

Prince’s Trust. It is launching a petition calling for

campaign group One Punch Can Kill has recorded

workplaces, gyms, colleges and universities to

a review of the law in terms of how it relates to

more than 80 fatalities since 2007.

raise awareness of the dangers of one punch

one punch assaults. This has the backing of

Sometimes the blow itself will cause fatal

assaults and of the potentially devastating

four MPs.

damage to the brain. Alternatively, it could cause

consequences, not only for the victims and their

“It’s not just a country-wide problem, it’s

a physiological response where a person stops

families and friends but also for communities.

worldwide,’’ says Maxine. “It’s all about

breathing and the brain is starved of oxygen.

“In the last year and a half I’ve had lots of families

awareness, it’s all about not punching out but

But in other cases, a punch will cause a person

contact me asking for support, help and advice

walking away."

to lose consciousness and strike their head on

and I’m supporting about 14 different families.

To donate to One Punch North East go to

a hard surface. Again, the result can be death

Some of them are just desperate,’’ she says.

onepunchnortheast.org.uk/donate

A one punch attack can have devastating consequences. Nitin Mukerji, consultant neuro-surgeon at Teesside’s James Cook Hospital explains why.

A severe blow to the head, whether from a punch or not, essentially

bruises to the brain swell up, the pressure increases and it can

jolts the brain, which is floating inside the skull in a cerebrospinal fluid,

cause death.’’

explains Mr Mukerji.

Even in non-fatal cases, much damage can be done, which may not

A severe impact – such as from a punch – to the face, can send the brain

be immediately apparent.

rocking two and fro, hitting the rear and then front of the skull.

“If, for example, someone was punched on the face, it’s the frontal lobes

“As a consequence, what might seem a small enough injury to the face,

of the brain that are impacted directly and these control the emotions

has essentially caused injury to the front and back and all the nerves and

and feelings. So you can get people whose personality changes, whereby

the nerve fibre tracts in between have been jolted and sheared,’’ says Mr

they can’t concentrate, they are not able to sit still, they get angry, they

Mukerji. “Therefore the consequences can be quite catastrophic.’’

can’t settle and keep a job, friendships and relationships suffer and a lot of

If the victim falls to the ground, those consequences can be so

consequences can happen.’’

much worse.

Some damage can be permanent and recovery comes slowly, taking up

"The brain of a six foot person falling to the ground in a second or so will be

to two years. This calls for supportive treatment such as cognitive and

subject to considerable acceleration causing further jolting.

behavioural therapy. Mr Mukerji adds: “A punch is not as innocuous as it

“Therefore the injury is exceptionally severe,’’ adds Mr Mukerji.

seems. This is happening to young people, the most productive people in

“Once everything is swollen that then leads to a vicious circle; the brain

our society and we really ought not to lose them. In my career I’ve seen

pressures rise, the heart struggles to pump blood into the brain, then the

lots of young lives lost as a consequence of this and it is really sad to see.’’

NRTIMES 41

CLINICAL PRACTICE

S E X A N N A X E SSEX ANDDD

REEL A T I P I O H S N N O I S T H A L R RELATIONSHIP IP

PPR S O PROBLEMS M OBLE E R M S A AND HOW TO TO NNDD H W TO OW HO A APPROACH H C A O R AA PP PPR OACH THEM TT HHEM EM

Neurological diseases and trauma can cause havoc for patients in their love lives. Here Barbara Chandler, an expert in the link between neurological disability and relationships, explains the sensitive challenges faced; and what healthcare professionals should do about them.

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CLINICAL PRACTICE

The neurophysiology of sex Sexuality is part of being human. Our sexuality affects how individuals perceive themselves and how they interact with those around them.

Sexuality is a complex area of functioning encompassing sexual development which begins in utero; sexual awareness which develops through childhood and adolescence; sexual responsiveness and awareness (Bancroft J 2009). It is a key element in the formation of meaningful relationships in adult life. It is an area of strength but also of vulnerability to internal and external factors such as health, self-esteem, societal and family pressures and values.

At the most basic level, sexuality is the means by which a partner is found for reproduction and the passing on of genetic material and this is evident in the animal kingdom as a whole.

However, for humanity, it is about relationships.

Neurological trauma or illness can have a major impact on sexual responsiveness and the capacity for relationships.

More often than not sexual expression is something that occurs within a relationship.

Part of the normal sexual experience includes masturbation and fantasy but it is in relationships that sexual expression is generally fulfilled.

Many factors can challenge the dynamic balance of a relationship and the onset of disease or trauma can have a profound effect

Why relationships matter The dynamics of a relationship have a profound effect on sexual functioning. Sexual expression begins with desire which is a function of the brain. Within the neural pathways there are both inhibitory and excitatory neurotransmitters. Dopamine is excitatory and Serotonin is inhibitory in the pathways linking desire to arousal of the autonomic and peripheral nervous system. Desire is influenced by a variety of cognitions and emotions such as mood – excited, happy, fearful, oppressed memories of previous good sexual experience or memories of painful abusive relationships. It will be affected by fatigue which is a very common symptom of neurological disease or trauma. It may be influenced by social context – is this relationship developing in a private setting or is it within a nursing home where privacy is difficult to establish?

The most recent imaging studies have demonstrated that certain parts of the brain are active in sexual desire, including the anterior cingulate cortex which connects to the amygdala, which in turn has a key role in emotional responsiveness (Zeki A 2007).

The central nervous system, through a complex set of pathways involving the higher levels of cortical functioning, provides a delicately balanced system to allow sexual expression within relationships. Any part of the system can be affected by physical, psychological, social and emotional factors.

The brain in turn connects through the spinal cord to the periphery. The sacral segment of the spinal cord is a key area from which nerves travel to the genitalia. The parasympathetic output to the genitalia comes from the sacral cord and the sympathetic nerve supply from the thoracic and upper lumbar cord.

In response to sexual arousal the nervous

system connects to the genitalia via the spinal cord leading to a neurovascular response with the parasympathetic nerves triggering erection in the male and vasocongestion in the female. The sympathetic system is involved in ejaculation. Any disease or trauma to the nervous system or medications acting on the nervous system can interrupt the pathways.

For example, a thoracic spinal cord injury will separate the sacral spinal cord from control by higher centres so that in the male reflex erections may still occur in response to a variety of stimuli including full bladder or irritation to the skin, but psychogenic erections in response to sexual desire may not occur.

What makes a good couple?

Key factors include mutual attraction, love, having fun together, enjoying sex together, trusting each other, ease of communication and being special to each other. As relationships move into longer term commitments, there are additional factors, including shared experiences and future plans, hopes and expectations.

Demands are placed on relationships such as financial commitments, bringing up children, looking after elderly relatives.

Meanwhile, each individual brings into that relationship their own health, beliefs, values and approaches to managing stress; their past experiences both good and bad, their need for autonomy and their need for intimacy. Each person has their own self-image and an image of their partner, which can be quite different to how other people see them. Impacting on the relationship are external pressures which can be social, financial, work and family pressures.

Many factors can challenge the dynamic balance of the relationship and the onset of disease or trauma can have a profound impact.

NRTIMES 43

CLINICAL PRACTICE

When everything changes…

The context of most sexual expression is within a relationship. It is also within this context that many people will experience the life-changing impact of chronic disease or acquired disability.

For some couples, problems of adjustment to the changes can be significant and place a strain on the relationship, sometimes leading to separation. For others, the impact of such stress can enhance their closeness. Different roles tend to be assumed as a relationship progresses. One of the commonest divisions of roles within a long-term relationship is with the arrival of children when, in some cases, one partner assumes the ‘bread-winner’ role and the other home-maker. Each partner has an image of self and of their partner, and this includes an awareness of their physical and psychological health. The onset of neurological disease and/or disability can present a great challenge to the stable state of a relationship. This may result in a change of physical appearance and cognitive ability.

The couple, having been partners in a familiar relationship, may find now that there is a carer and a partner who requires care. New roles may be taken on by one partner whilst roles must be relinquished by the other. The shared hopes and expectations for the future may alter. It is important to note that the greatest impact comes from disorders that alter cognitive and emotional responses – rather than just physical functioning.

Escalating problems Most often, the problems are multi-factorial in origin. For example, there could be loss of sensation because of MS, which alters the sexual experience, together with fatigue causing a change in overall lifestyle; low mood as a response to loss; medication resulting in specific sexual dysfunction, such as delayed orgasm with the selective serotonin reuptake inhibitors (SSRI anti-depressants); social changes resulting from the loss of income; or practical issues at home, such as no longer managing stairs and therefore, sleeping in a separate room from the partner.

Brain injuries can also lead to impaired self44

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monitoring, which means the individual may be unable to suppress commenting on things that come to mind no matter how offensive they may be. Self-centredness is also a common trait, as is a lack of empathy. The ability to take note of how the other person is feeling – whether they’ve had a good or a bad day - without speaking to them, is quite important in relationships. With acquired brain injury, non-verbal questioning can be lost (Wood R Williams C 2008).

Sexual problems are common post brain injury and, in one study, 50% of men identified dysfunction (O’Carroll et al. 1991). In a minority of patients, increased sexual drive and sexual dis-inhibition can be a problem. This is more likely to occur with damage to the frontal lobes. Reduced sexual desire and interest are most common and result from the brain damage itself, the effect on the relationship, fatigue, depression, anxiety, low motivation and, sometimes, low testosterone secondary to damage to the hypothalamic pituitary tract.

The partner’s plight A common observation from partners of people with acquired brain injury is ‘this is not the person I married’. Often in relationships, partners face challenges together. In the event of a trauma, the able-bodied partner may face

this new challenge alone.

While this is going on they may also feel a desire to grieve for the old loved one they have lost. But there is no acceptable way for them to do this.

They may feel isolated and in a state of social limbo, in which it feels inappropriate to go out and have fun without their partner. Also, friends may say that the patient looks good, but only the partner sees the major behavioural changes that have occurred.

Sometimes we see situations where the relationship had been on the verge of splitting up before the injury or onset of disease. With the patient unable to make the decision to end the relationship afterwards, the partner becomes trapped in a loveless or failing relationship out of guilt.

Rebuilding relationships Despite all the pressures trauma and neurological conditions can put on a couple, relationships can be rebuilt. In relationship therapy, we are always honest and explain that things will never get back to how they were.

But, for all the behavioural changes, there may be factors that the partner still finds very attractive. We encourage couples to find new ways to have fun together and to start getting to know one another from scratch.

CLINICAL PRACTICE

Other interventions For men, drugs such as phosphodiesterase inhibitors have proved to be useful treatments for erectile dysfunction.

These work on the relaxation of smooth muscle which allows vasocongestion in the genitalia in response to a chemical messenger cyclic GMP. However, it is always important to approach treatment of sexual disorders in a holistic manner. It is rarely simply a mechanical problem that can be fixed with a pill.

Therefore, taking a full history and if possible seeing the individual with their partner allows the psychosocial aspects of the sexual dysfunction to be explored as well as the physical aspects.

Healthcare professionals need to be alert to the stresses and strains that can be experienced in this area of life which generally people view as very private and personal.

The P-LI-SS-IT model (Annon 1976), which was proposed over 40 years ago, emphasised that the first and most helpful approach to sex and relationship problems was giving people permission (P) to speak about the issues. People may drop hints that all is not well in a relationship and it is up to the health professional to pick up on that hint.

Even if you are not certain how to help, acknowledge that there is an issue; allow the individual to talk about it and then, if you feel it is beyond your remit or skill, offer to refer to another agency – perhaps to the GP or to a sex and relationships clinic or to an organisation such as Relate.

The most important response is to say, “this is a valid issue to raise and there is help available”.

In the PLISSIT model the next three stages are the provision of Limited Information, Specific Suggestions and Intensive Therapy.

TEN STEPS: How healthcare professionals should approach their patients’ intimate relationship problems.

Get to know the sources

Always acknowledge

Most people will be helped in the first one or two steps of this model.

Barbara Chandler is a consultant in rehabilitation medicine in NHS Highland.

Previously she ran a sex and relationships clinic for people with neurological disability in the North of England. She teaches health and social care professionals on sex and relationship issues and has been published extensively on the topic.

Useful resources Relate: www.relate.org.uk]www.relate.org.uk The Institute of Psycho-sexual Medicine: www.ipm.org.uk The College of sex and Relationship Therapists: www.cosrt.org.uk

Be honest and realistic

Often patients going

5. with patients and partners.

8. through rehab can feel

They may never recover their old

their sexual identity is

relationship, but could still build a

threatened, leading to low

positive new one.

self-esteem. Give them time to

1. of professional help

3. there is a problem if

available in your local area. Relate

the patient or their partner mentions it or even just

6. partner may be going through

would to look their best.

is a charity offering relationship support across the UK. Some areas

hints at it.

and how that may be impacting

include shaving their legs or

are also served by specialist clinical

Never ignore the problem and

on their health. Do they look

putting make-up on; for men it

psychology services. Patients

certainly do not make light of

exhausted? Have they been crying?

might be having a shave or

should also be encouraged to

it or embarrass or make fun

A doorstep conversation in private

doing their hair.

consider visiting their GP about

of the patient.

might encourage them to open

such matters.

up. Perhaps ask them if they have If you suspect there

Remember that sex and

do the little things they usually Consider the difficulties the

4. are sex and relationship

For women, this might

Consider implementing

considered visiting their GP about

9. some training on sex and

their own concerns.

relationship problems within

2. relationships are very

concerns, try asking a

sensitive topics and most people

non-threatening question.

will not be comfortable talking to

Perhaps as the patient is leaving,

7. partners with too many

strangers about them. Create a

ask how things are at home.

responsibilities, such as helping out

10. ultimately, your primary

safe and secure setting to discuss

This gives them an opportunity

with cognitive therapy at home.

responsibility is to get the best

them. Relationship issues should

to get the issue off their chest

Although outwardly willing to help,

outcome for the patient – not to

be presented as a normal and

without bluntly asking them an

inside they may be feeling drained,

influence whether or not their

important element of the patient’s

awkward question.

isolated and depressed.

relationship survives.

your ward, unit, service or centre.

Be careful not to overload Remember that,

overall health and wellbeing.

NRTIMES 45

TECHNOLOGY

sponsored feature

T

he World Health Organisation (WHO) describes rehabilitation as an “active process by which those affected by injury or

disease achieve a full recovery”.

If this is not possible, patients should be able to “realise their optimal physical, mental and social potential”. They should also be “integrated into their most appropriate environment”.

Rehabilitation today, however, is often regarded as sufficient when patients have more or less adapted well to their impairments rather than getting rid of them. Compensation for lost abilities is usually easier to achieve than their recovery.

This is set against the backdrop of relatively small budgets being designated to rehabilitation.

In Switzerland, for example, inpatient rehabilitation made up 1.7% of total health costs at the last annual count in 2014. Outpatient physical therapy, meanwhile, represented a mere 1.4%.

Figures in the UK tell a similar story.

Rather than receiving therapy until their potential is reached, patients are discharged when it is considered safe by cost-bearers. Therapists and patients are forced to compromise on goals and patients fall short of an optimal recovery.

Gery Colombo, CEO, Hocoma

Therapy time during a regular day at a rehabilitation hospital is also limited. In four European rehab centres we tested, stroke patients received between one and three hours of therapy

A revolution in rehab

The patient’s potential should be the only limiting factor to their recovery, argues Gery Colombo, CEO of medical technology firm Hocoma. Here he explains how robotic devices are fighting back against the cost and resource constraints hindering effective neuro-rehab.

per day. Over 72% of the day was spent on nontherapeutic activities.

Yet numerous studies show a direct correlation between therapy time and the progress made towards functional recovery.

Even in therapy time, the fitness of the therapists themselves presents another potential limiting factor. As I myself know from my research days, helping a patient through an intensive session of gait training requires a lot of physical effort and regular rest periods.

Ideally, the only limitation on the patient’s rehabilitation should be their own capabilities and how far they can be challenged. Cost pressures and a lack of intensive therapy time should not be barriers on the pathway to recovery.

But with the continual evolution of technologyassisted therapy, these roadblocks are gradually being eroded.

46

NRTIMES

TECHNOLOGY

Hocoma's rehab technology in action

We will improve millions of lives by providing functional and efficient solutions that set the standards for human movement therapy

recovery potential – and can lead to further impairments due to negative plasticity, the so called “learned non use”.

Out of the estimated 15 million people worldwide who experience a stroke each year, 5 million live with permanent disability and

Robotics and sensor-based devices are

rehabilitation with the fact that this

3 million remain dependent in their mobility.

increasingly being utilised to provide

technology can enable therapists to

Under-treated impairments linked to other

more intense, more efficient and longer

supervise more than one patient at a time,

neurological conditions also affect millions; but

lasting therapy.

we see massive opportunities in the field

therapy devices are gradually turning the tide.

Studies show that a standard session of

of neuro-rehab.

In the coming years, I believe technology will

arm training during inpatient rehabilitation

The need for affordable ways of giving patients

increasingly enable patients to bypass the

culminates in an average of 23 repetitions

the intensity of therapy necessary to reach their

challenge of dwindling resources to reach the

over four minutes. Switch on a technology-

potential is obvious. Individuals post stroke, for

outer limits of their potential.

assisted device and the patient can get

example, make significantly less use of their

Hocoma is the world market leader and

through an average of 900 movements in a

upper extremities throughout the rest of their

total solution provider for robotic and

single session.

day during inpatient rehabilitation.

sensor-based devices used in neuro-rehab.

In technology-assisted gait training therapy,

Able-bodied control persons use their arms

Hocoma Solutions are suitable for a range of

a patient can walk up to two kilometres

during 8 or 9 hours per day. In contrast,

conditions including stroke, traumatic brain

(around 3,300 steps). Such training is only

individuals with stroke in inpatient

injury and spinal cord injuries.

limited by the patient's capabilities rather

rehabilitation, use their more affected arm

than the stamina of the therapists.

during only 3.3 hours and their less affected

Going a step further, if we combine the

arm, 6 hours-a-day. This suboptimal level of

See www.hocoma.com for more info or visit us

therapy intensity begot by technology-based

therapy results in large amounts of untouched

at RehabWeek in July!

Putting the future of neuro-rehab in focus

a busy programme of lectures, sessions and panel discussions related to rehabilitation and the ever-advancing technologies within it.

Among the speakers will be representatives of the Wellington Hospital in London, which has adopted Hocoma’s Lokomat therapy

device into its neuro-rehab pathway.

A lecture entitled ‘using technology to maximise intensity and outcomes in neuro-rehab’ will be delivered by Wellington’s clinical development facilitator Tamsin Reed.

To find out more and to book your place visit www.rehabweek.org.

Hundreds of rehabilitation professionals will descend on London for RehabWeek 2017 on 17 to 20 July.

The event, at the QEII centre, features

NRTIMES 47

INSIGHT

CRISIS WITHIN A CRISIS Blows to the head , sustained in war, torture or on the treacherous journey to a better life, mean many refugees are suffering neurological challenges on top of their already mountainous struggle. Peter Jackson reports.

48

NRTIMES

INSIGHT

W

e are all too accustomed to

Mental Health. The research was conducted

He adds: “We had to be careful about going too

television images of refugees and

using 115 asylum seekers and refugees

much into symptom areas because sometimes

asylum seekers.

in Glasgow who had been referred to a

they were undergoing treatment or were about

We often hear their stories; of persecution

community psychological trauma service with

to undergo treatment for other issues. So we

and suffering in their home countries and their

moderate to severe mental health problems

asked more generally if they thought the head

struggles to reach the relative safety of

associated with psychological trauma. Using

injury had had a long lasting effect.’’

the West.

interpreters where required, the subjects were

Head injuries can result in long term

What we do not hear – because it has until now

screened for a history of head injury.

impairments in attention, pre-existing memory

been a largely unexamined problem – is how

One of the report’s authors, Professor Tom

and ability to form new memories, word finding

many of them have suffered traumatic head

McMillan, explains: “Given their background

and executive function. The Glasgow study

injuries and have sustained brain damage.

and the reason why they are seeking asylum,

revealed similar problems among the refugees.

Now, however, a team of medical experts in

there’s a likelihood they may have sustained a

“The kinds of problems were related to

Glasgow have conducted research among

head injury in a circumstance where it has

cognitive function,’’ says Prof McMillan.

asylum seekers and refugees in the city and

gone undetected.

“Typically people’s memory is poor for new

have uncovered the problem, which not only

"They have not attended hospital, not been

events, for things that have happened recently,

adds to the suffering of vulnerable people,

detected and on average the head injury was

and they can’t concentrate or attend as

but which can also – potentially – harm their

10 years earlier, so they themselves would not

well, while they also can have difficulty with

chances of a successful asylum application.

necessarily attribute their current difficulties to

judgement, solving problems and integrating

The result was a report published in Global

brain damage.’’

cognitive information.

NRTIMES 49

INSIGHT

detainees resettled in Boston reported a history

“Logic would tell you that it is,’’ concedes Prof

of head injury.

McMillan, but he points out that many of

The Glasgow study found that the overall

those suffering head injuries might only have

prevalence of head injury was 51% and at least

made it to the UK with the help of family

38% of those had a moderate to severe head

members or others.

injury that could cause persisting disability.

Another serious potential implication is that

The prevalence of head injury of a severity

the injuries sustained by these people might

likely to cause persisting disability is estimated

endanger their chances of getting asylum.

to be about 2% in the general population in

“That’s the hypothesis arising from this

Western countries.

study; that they might not be able to form

The causes of the original trauma were

a credible evidence provider because their

also different.

evidence is unreliable and they can’t remember

“The head injury was certainly different from

information that people think they should be

what you would expect from the general

able to remember.

population,’’ says Prof McMillan. “Among

"It could be that they had a significant head

the general population in Glasgow, the most

injury at some point during that time period."

"Sometimes there can be changes in

common cause of head injury is fall, then

He would like to see a greater awareness of the

personality where they can be more irritable,

assault, then road traffic accident.

risk of brain injury in such cases.

aggressive, more fatigued and tired or just

"You would expect an accidental cause, like a

He adds: “This could be significant in some

lacking energy and the ability to get up and

fall or a road traffic accident in about 70% of

cases where an individual may be seen to be

do things.

people. Whereas in the asylum seekers it’s the

being a bit difficult or not remembering

"You can see how all of these factors might be

other way round.

things or remembering things differently

difficult for people seeking asylum in the UK

"Accidental injuries accounted for a third, with

between interviews.

who have come here from another country.’’

assault in two thirds.

"Perhaps there should be some consideration

The overall average age of those studied was in

"The assault was associated with causes you

as to whether there’s any biological basis to

the 30s.

wouldn’t normally find in Western countries –

this, like traumatic brain injury.’’

For those believed to have suffered head

they were domestic violence, torture, violence

Furthermore, head injuries can cause

injuries, it was about 35; with 59% of the

through sexual trafficking, so a different kind of

emotional problems which can lead to the

sample being female.

grouping of causes from what you’d commonly

breakup of relationships, social isolation

Previous studies had indicated that asylum

find in the general population.’’

and unemployment.

seekers and refugees are more likely than

One conclusion that might be drawn from this

This can further complicate the fallout of

the general population to have experienced

is that, assuming those who make it to the West

psychological trauma.

physical assault and injury in their country

as refugees and asylum seekers tend to be the

There is also the possibility that clinicians may

of origin; and to have been victims of torture,

fittest and most able, then head injury sufferers

not be alert to the likelihood of head injuries

including blows to the head and asphyxiation,

among the asylum seekers and refugees would

when recording symptom complaints among

which can result in brain damage.

be under-represented and the prevalence of

vulnerable and often traumatised groups, such

Research revealed that more than three

head injury in their home countries would be

as asylum seekers, where there is already a high

quarters (78%) of Vietnamese ex-political

even greater.

incidence of mental health problems, including

Professor Tom McMillan

post-traumatic stress disorder and depression.

“At a very basic level, NHS services, and particularly mental health services that

Injuries sustained by these people might endanger their chances of getting asylum. Their evidence becomes unreliable and they can't remember things

deal with asylum seekers and refugees, should be screening for head injury when they are assessing people. Therefore, they could, if necessary, carry out a more detailed assessment and take into account any persisting disability when they are working with them.’’

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INSIGHT

Head injury and psychological trauma can damage an individual's case for asylum

Prof McMillan would also like to see greater

services could provide them with some

a time afterwards - and how long that was

liaison between those services which deal with

education and some simple screening tools so

for. By finding that information you can get a

asylum seekers and refugees and the brain

that, if they had a concern, they could perhaps

reasonably good idea of how severe the injury

injury services which could provide advice.

triage a bit and link through.

was. It can be difficult, especially if somebody

“I’m not suggesting they should be swamped

"Even these fairly simple contacts could be

was drunk at the time or were tortured and

with referrals but at least they can advise

quite important,’’ says Prof McMillan.

can’t actually remember.’’

in cases where there might be a concern on

In terms of how screening for head injury might

Now the report has been published, the

how to carry out a screening assessment, a

be carried out, he says: “There are some formal

Glasgow team behind the research are trying to

kind of link in the NHS care pathways to brain

tools you can use, but you routinely need to

make its findings and implications more widely

injury services for any cases that require more

identify whether they’ve been in situations

known both in the UK and in other countries

detailed investigation.’’

where there have been knocks to the head.

taking in refugees and asylum seekers.

People referred onto mental health services

You’re wanting to know how often this is

It has already made a difference in the city

would be seen by people qualified to identify

happening, because it can be fairly mild, but if

where the research was done.

brain injury, but those being dealt with at

it’s repeated enough it has a cumulative effect.

Prof McMillan says: “In Glasgow the mental

an earlier point in the process could still be

"We need to know if it resulted in loss of

health team are now routinely assessing and

identified as potentially having a problem.

consciousness and, if so, how long that loss

screening for head injury, so there has been a

“I think just having a link with brain injury

was for and whether they were confused for

local impact.’’

NRTIMES

51

TECHNOLOGY

ASSISTIVE TECHNOLOGY DRIVE MOVES UP A GEAR

support their verbal communication – for

A springtime gathering in London recently could breathe new life into the campaign to get liberating technology to more people who need it. Andrew Mernin reports.

Environmental control systems, which support

P

neurone disease or with cerebral palsy with very complex levels of disability. They can all access equitable services and provision across the country, which is fantastic.

“But there are still lots of people who are not eligible for those services. If they have a less complex level of need they might not necessarily get the same level of support or access to the technology. There is also work to be done in terms of giving people who need it, access to a wider range of technology, including computer access at home and access to mobile phone technology, which can be hugely liberating.” independent living by enabling tasks like operating curtains, TVs and the front door, should also be more easily accessible, says Reeves.

“There has been an explosion of AT that could make a difference to thousands of people’s lives.

However, the benefits of the technology are far

olitical pugilism gave way to a

access to the right support that could be life-

wider reaching than just helping people with

rare outbreak of unity at

changing for them.”

little or no speech or with complex physical

Westminster recently.

Assistive technology (AT) is used by people with

disabilities. For example, people in hospital

An event, in the palatial quarters of Speaker

a range of conditions, including autism, vision

John Bercow, officially celebrated the birth of

and hearing problems, mobility impairment,

the All-Party Parliamentary Group for Assistive

learning and cognitive disabilities and manual

Technology (APPG AT).

dexterity difficulties.

APPGs bring cross-party members together to

Its ongoing advancement offers vast potential;

pursue a particular interest. While they have

but also presents a number of problems

no official status in Parliament, they can be a

deserving of the APPG’s attention. Among

catalyst for positive change.

them is the inconsistent provision of access and

This APPG was initiated by the ACE Centre,

support across the country.

which offers augmentative and alternative

In 2014, a £15m-a-year injection of funding via

communication services. Anna Reeves, who

NHS England was announced, supporting the

runs the charity and was a driving force behind

provision of equitable services and equipment

the APPG, says: “We’re focusing on the wider

to children and adults unable to communicate

range of people that could benefit from

verbally. The establishment of augmentative

assistive technology, which is rapidly evolving

and alternative communication (AAC) services

all the time.

has made “a massive difference” according to

"It’s touched a nerve with politicians because

Reeves – but inequalities remain.

they are getting their constituents coming to

“Support is no longer patchy for people with

them expressing frustrations about not having

complex needs who require technology to

52

example, those in the latter stages of motor

NRTIMES

Anna Reeves, the ACE Centre

TECHNOLOGY

MP Seema Malhotra

Speaker John Bercow may need such technology temporarily to

until they’ve got the job. Surely you need the

disabled people. The disability employment

communicate with the outside world. It can

equipment to be able to prove you can do the

gap—the difference between the employment

also support children in education, help people

job to get it. The system seems back to front.”

rates of disabled and non- disabled people—

with disabilities gain employment and improve

Amid cuts to disability benefits and the

therefore stood at 32 percentage points.

independent living. We need a political spotlight

introduction of tougher eligibility tests in recent

Utilising technology to close this gap could have

to ensure AT is embedded into policy, legislation

years, there may well be an appetite within the

significant economic benefits to the nation; but

and funding streams.”

APPG to tackle this issue. Certainly early signs

wouldn’t the sheer cost of the technology be a

If technology is to help secure jobs for people

suggest AT’s link with employability is near the

major barrier in these days of austerity?

previously excluded from the workplace, one

top of the group’s agenda.

“The cost of the technology itself is a bit of a red

glaring error must be addressed, says Reeves.

As MP Seema Malhotra put it at the APPG

herring,” says Reeves.

“It seems obvious to me that if you give

launch: “If we are to have a truly equal society

“With the obvious reduction of benefits and the

somebody technology to enable them to

then we have to make sure the issue of disability

increased taxes from getting more people into

show evidence of their potential and their

is as much on the agenda of education and the

work, the cost is relatively low, although we

capabilities, then they are more likely to be

workplace as we have seen with gender

need better research and evidence around

able to compete on an even playing field in a

and race.”

that topic.”

recruitment situation.

According to the Resolution Foundation think-

Reeves sees training implications associated

“But as it stands, people can’t get support for

tank, 49% of disabled people aged 16–64 were

with AT as a bigger barrier than cost issues.

the assistive equipment they need to do the job,

in work last year, compared with 81% of non-

“Clearer funding streams for technology would

We have to make sure the issue of disability is as much on the agenda of education and the workplace as we have seen with gender and race NRTIMES 53

TECHNOLOGY

Children with special educational needs may not be prioritised for the provision they need

54

NRTIMES

certainly help but I think significant investment

as it should be. There have been lots of cuts

is needed in terms of people’s time to develop

to services supporting schools at a local

skills and knowledge of the technologies.”

authority level and schools have become more

A lack of the knowledge needed to recommend

independent and in control of their

and support AT usage is particularly evident

own budgets.

in schools.

"I think there is a risk that children with special

“We go to schools all the time and see

educational needs and disabilities may not

equipment that could be life-changing for some

be prioritised for the provision they need. But

children, but the staff don’t know how to use it,

also, the expertise isn’t available to the schools

so it gets shoved to the back of a cupboard.

about what technology is out there, and what a

“It’s not as straightforward as the schools not

difference it could make to certain children.”

having enough money.

Reeves would like to see more training

"The equipment is already there in many

opportunities offered to a range of

instances but is not necessarily used as well

professionals about AT.

TECHNOLOGY

Teachers, speech and language professionals, occupational therapists, school technicians, support staff working with adults in care and special educational needs co-ordinators would all benefit, she says.

Such courses are often poorly attended and not prioritised by time-starved professionals and their bosses, however. It is hoped the APPG will help to switch more professionals onto the value of AT and generate more demand for AT-related training.

Reeves also recognises the need for clearer and more detailed evidence about the power of AT. “There needs to be more research into this area and we need a better understanding of what AT can do to support people. We need to know how many people need it, what that costs and what difference it makes.

We haven’t got the research to answer those basic questions. We’d like to get more academic institutions involved, although it’s quite difficult to identify funding streams where this could fit in.”

Funding to support innovation and new product development in AT is similarly strained. Often AT products have been spawned from technology used in more Key players in the APPG AT

commercially-driven markets.

“Investors are usually looking to develop technology with a wide range of benefits, not just for people with disabilities, as

Who’s who

the funding is just not there to develop

The APPG AT is chaired by Labour and Co-operative Party MP Seema Malhotra, who

it. Eye-gaze technology is used a lot in

represents Feltham and Heston. She is also a member of the Parliamentary Select

supermarkets to understand where

Committee on Exiting the European Union. She recently served as Shadow Chief Secretary

customers are looking on the shelves,

to the Treasury and continues to keep an interest in economic affairs, productivity, how

for example. At the same time, it can be

growth and prosperity can be shared and youth educational achievement. The group is

life-changing for people with no other

co-chaired by Lord Holmes of Richmond, MBE, one of Britain’s greatest Paralympians,

movement than their eyes.”

amassing nine gold, five silver and one bronze medal across four games, including a record

Research and development will no doubt be

haul of six golds in Barcelona in 1992. His fellow co-chairs are Lord Low of Dalston CBE – a

one of many discussion points for the APPG

lifelong campaigner for the rights of blind and disabled people – and Conservative MP

once its work takes shape.

Matt Warman, who represents Boston and Skegness. Other parliamentarians in the APPG include MPs John Cryer, Neil Coyle, Barry Sheerman and Bill Esterton.

Follow the group’s progress online at

Universities, technology firms and charities are among several organisations

policyconnect.org.uk.

supporting the group.

NRTIMES 55

CONDITION

The MS Society provides an important support network for people with MS

56

NRTIMES

CONDITION

CONDITION UPDATE:: MS Don Mahad, clinician and scientist from the University of Edinburgh, on the breakthroughs and challenges affecting multiple sclerosis treatment.

Multiple sclerosis can affect the brain and

start their MS with a gradual worsening

spinal cord and cause a range of symptoms,

of symptoms. In primary progressive MS,

including problems with vision, arm and

symptoms gradually worsen and accumulate

leg movement, sensation and balance. The

over several years, and there are no periods of

condition slightly reduces life expectancy and

remission, though people often have periods

causes occasionally mild - but usually serious

where their condition appears to stabilise.

- disability. There are around 100,000 people with diagnosed MS in the UK, with most receiving their diagnosis in their 20s and 30s, although it can develop at any age. It is about two to three times more common in women than men.

MS starts with individual relapses or gradual progression. More than eight out of every 10 people with MS are diagnosed with the ‘relapsing remitting’ type, which causes episodes of new or worsening symptoms.

These relapses typically worsen over a few days, last for days, weeks or months, then slowly improve over a similar time period.

Relapses often occur without warning, but are sometimes associated with a period of illness or stress. Around half of people with relapsing remitting MS will develop secondary progressive MS within 15-20 years, and the risk of this happening increases the longer individuals have the condition.

Just over one in 10 people with the condition

Causes of MS MS is an autoimmune disease which is believed to be caused by an interaction between genetic make-up and environmental factors; particularly those to which people are exposed in the first 10 or 15 years of life. Migration studies show when you have families moving from a low prevalence area like Spain (one in 1200 approx.) to a high prevalence one such as Scotland (one in 400), the risk of MS for children goes up. But for people aged over mid-teens, it does not.

People in higher prevalence areas may have less sunlight exposure, and therefore less vitamin D, and more exposure to viral infections. We don’t fully understand the genetic element of MS but genetics are likely to have a small effect on susceptibility.

Research continues into MS causes, including recent focus on the Ebstein-Barr Virus (EBV) and its potential link to MS; but much more work is required on this front.

NRTIMES

57

CONDITION

It can be difficult for MS patients to access the expertise that can help them

The search for a cure We had nothing to treat MS 30 years ago, but now there are around half a dozen approved treatments – with more coming through. All of these treatments are for relapsing MS and, as yet, there is no approved therapy for the progressive type. Once in that progressive state when the body starts to deteriorate, there is no treatment to slow down, halt or reverse it. The treatment landscape is changing, however.

There are several reasons for optimism, including the emergence of ocrelizumab, which targets B lymphocytes in the immune system. It has been shown to reduce the rate of progression in primary progressive MS cases. The drug is currently under consideration by the US Food and Drug Administration but is not yet available here in the UK. Among a number of other drugs at various trial stages is siponimod, which has shown beneficial effects in secondary progressive MS and is certainly a step in the right direction.

In all the recent and current trials, it is unclear whether these treatments work in a subpopulation of progressive patients or for everybody. Trials have tended to involve slightly younger people at the earlier stages of the disease, rather than those with advanced progressive MS. High dose Biotin, which targets energy metabolism rather than inflammation, is a potential option for all with progressive MS. It has been shown to benefit both forms of progressive MS and a large trial is now underway. Generally, I am optimistic about future treatment for progressive MS. What the MS field has achieved in the last three decades is impressive; more progress has been made than with most other neurological conditions.

In the early 90s, nearly all of the focus was on controlling relapses. The understanding was that if you took out the relapses, you could prevent the 58

NRTIMES

Don Mahad, clinician and scientist, University of Edinburgh

progressive disease. That has not turned out to be the case, but in the last five years researchers have started to focus on progressive MS. One day there may be treatment options that can actually restore lost functions or at least maintain functions at risk of deterioration.

Diagnosis Traditionally there was an average of six years between the first symptoms emerging and a primary progressive MS diagnosis. This now stands at around 3.8 years, according to one recent clinical trial. This is still a relatively long time, mainly because of a lack of treatment options for early diagnosis. Progressive MS is much slower than many other neurodegenerative conditions.

Given that there’s no treatment, there’s an argument that doctors shouldn’t vigourously pursue a progressive MS diagnosis for someone who’s living a full and active life. Early symptoms might initially be assumed to be something minor,

like a trapped nerve – but greater awareness of progressive MS might help the link to be made with MS at an earlier stage.

Current treatments With relapsing MS, we currently have no way of knowing who is going to have lots of attacks and who will be minimally affected years down the line. With no predictive tests, treatment is centred around handling uncertainty. All the drugs are directed at reducing the frequency of relapses, which occur on average every 18 months if untreated.

What relapses look like The symptoms of a relapse depend on where the inflammation is. If it is in the optic nerve, for example, a person may experience blurred vision and discomfort when they move their eyes.

Inflammation in the spinal cord can affect arms, legs and bladder function. If it is in the brainstem,

CONDITION

Public knowledge and awareness of MS has increased in recent years

it can affect eye movements and cause tunnel vision, speech problems and other neurological problems.

Outlook for people with MS On average, life expectancy is reduced by around five years, while there is a very small proportion of people with MS who die young. This is becoming increasingly rare as drugs advance. Although the progressive stage is not fatal, disability can be severe. However, the disease is much slower in its progress than motor neurone disease, for example.

Impact on the brain A lot of tissue is generally lost through brain and spinal cord atrophy caused by a loss of nerve cells. As the brain and spinal cord shrink, physical functions like motor, bladder and bowel control, and co-ordination, can deteriorate. The cognitive speed of information processing can also slow down. If information is arriving at a fairly fast rate, it can be

difficult for the individual to gather and process it. In general, the ability to process information is relatively intact, but the speed of processing is reduced.

Therapies There are a lot of symptomatic therapies which are both pharmacological and non-pharmacological.

Commonly, patients will receive cognitive and physiotherapy sessions, such as training on specific areas including bladder control and pain management. There are some approved therapies to improve walking, but these tend to have around a 50% success rate, with many people experiencing only temporary improvement.

The rise of self-prescription Members of the MS population are generally very motivated, with a tendency to look up treatments on the internet. In my experience, a lot of patients are taking a fairly high dosage of

vitamin D supplements, as recommended. Others are also taking biotin or anti-ageing, anti-oxidant supplements. Biotin has also been known to interfere with blood tests so it is important that people with MS are encouraged to discuss what they are taking with an MS neurologist. Of course, it is ultimately up to the individual what they decide to take.

Care provision challenges There aren’t enough neurologists in the UK, which means it can be difficult for MS patients to access the expertise that can help them. This shortage has made the role of specialist MS nurses evermore crucial within the care model.

Neurologists still pitch in with complicated cases and diagnosis, but nurses are increasingly important in terms of immediate access to care. Access to physiotherapists, occupational therapists and MS centres based in the third sector is also on the rise.

NRTIMES 59

EVENTS

Dates for your diary APR17 / 10 - 13

BNA 2017: Festival of Neuroscience.

ICC, Birmingham. Contact bna2017enquiries@neurofest17.co.uk or 01704 550 970.

20

Community rehabilitation: Practice and the family perspective. Part of Sweetree’s Professional Learning Series.

Fieldfisher, Riverbank House, 2 Swan Lane, EC4R 3TT. Contact info@sweetree.co.uk or 020 7624 9944.

MAY17 / 4

Riding the rapids: Negotiating the challenges of life after brain injuries (annual HeadFirst conference).

Central Hall, Westminster, London.

See abisolutions.org.uk for details.

11, 12

2nd “Together” International Rehabilitation Conference.

East Midlands Conference Centre.

Contact forumconferences@btinternet.com.

25

18, 19

25

24

Specialist training from brain injury experts – brain injury and clinical negligence.

7 Bedford Row, London, WC1R 4BS. Contact julie.mccarthy@ braininjurygroup.co.uk.

National Brain Injury Conference: Out of the Comfort Zone – Difficult decisions following a brain injury.

Hilton Newcastle Gateshead hotel, Gateshead.

Contact conference@jspsh.co.uk or call Steph or Millie on 0114 229 0100.

60

NRTIMES

Sportsmed Southwest 8th Annual Sports and Exercise Medicine Conference.

Postgraduate Medical Centre, Plymouth, Devon, PL6 8DH. Contact Christine.bloomer@nhs.net.

Every Brain Injury is Different: A Suffolk Story Landmark House, Egerton Rd, Ipswich, IP1 5PF. Contact ros.harvey@suffolk.gov.uk or visit www.suffolkcpd.co.uk.

24

South West Acquired Brain Injury Group (SWABIF) Bristol and Bath – professionals in brain injury.

Royds Withy King, Midland Bridge Road, Bath, BA2 3FP. Contact emma@emrehab.com.

24 - 27

European Forum for Research in Rehabilitation (EFRR) 14th Conference.

Glasgow Caledonian University, Glasgow.

See efrr2017.com for details.

JUN17 / 7, 8

European Neuro Convention 2017: Diagnostic, Surgical, Rehabilitation.

ExCel, London.

See neuroconvention.com for full details.

8

An Interdisciplinary Team Approach to the Management of Patients in Prolonged Disorders of Consciousness.

Royal Hospital for Neuro-disability, London. Details available at www.rhn.org.uk/docstudyday.

EVENTS

14

A Brave New World: From Cradle to the Grave – the 2017 BABICM annual conference.

Hilton Birmingham Metropole NEC, Birmingham.

Details available at babicm.org.

14

South Yorkshire Acquired Brain Injury Forum (SYABIF) meeting.

Location TBA. Contact ann@annhurley.co.uk

14

South West Acquired Brain Injury Group (SWABIF) Bristol and Bath social – professionals in brain injury.

Pitcher & Piano, Bristol.

Contact emma@emrehab.com.

15

National Paediatric Brain Injury Conference hosted by the Children’s Trust.

British Medical Association, BMA House, Woburn Place, London, WC1H 9JP. See the thechildrenstrust.org.uk for details.

30 - 2 JUL

The Way Ahead – bringing together brain injury survivors, family members, carers, trustees, committee members, staff and volunteers from Headway groups and branches across the UK, for a weekend of learning, sharing and socialising.

Yarnfield Park Conference Centre, Staffordshire.

See headway.org.uk for full details.

JUL17 / 6

Enhancing Rehabilitation: Technical, Surgical and Peer Group Support for Neurorehabilitation of Brain or Spinal Injuries.

The Ark Conference Centre, Basingstoke. Contact Claire.bourne@glensidecare.com.

12

Specialist Training from Brain Injury Experts – Court of Protection.

7 Bedford Row, London, WC1R 4BS. Contact julie.mccarthy@ braininjurygroup.co.uk.

13

My Life; My Injury - a focus on neurological injury and the actual impact of clinicians presented by FieldFisher.

One Great George Street, London SW1P 3AA. See abisolutions.org.uk for details.

17 - 20

RehabWeek 2017: Translation and Clinical Delivery. London.

Includes INRS 2017, ICORR 2017, IFESS and BSRM meetings and conferences.

See rehabweek.org for full details.

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 61

CLOCKING OFF

Slowly but surely…

Patients and their loved ones come to neuro-rehab services at an often confusing and extremely stressful time of their lives.

A single injury sustained in a moment might have transformed their situation forever. Coming to terms with their new outlook is hugely challenging – especially in an era of rapid change for all of us. Buddhist monk Haemin Sunim’s global bestseller may offer a little respite. The Things You Can See Only When You Slow Down has helped millions of people reconnect with the world around them and handle life’s many setbacks. The book combines Sunim’s Zen teachings

Surfing has thrown up an inspiring brain injury recovery story

with calming full-colour illustrations and speaks directly

Making waves

Credit where it’s due

to the anxieties that have become

The power of neuro-rehab has a new poster boy

Football’s reputation has been through the

part of modern life. It celebrates

currently ripping up the competition in the daredevil

mud recently. As reported in our last issue,

the joy of slowing down and could

sport of surfing. Owen Wright suffered a brain injury in

evidence is growing about the link between

be worth a recommendation to

late 2015 after falling from his board in Hawaii, leading

heading balls and brain disease, while the

anyone caught in the storm that

to severe concussion and bleeding on the brain.

sport’s authorities take little obvious action.

follows severe injuries.

At his lowest point it seemed unlikely that he would

Against this seemingly indifferent attitude

ever take to the waves again, never mind returning to

towards concussion, it was refreshing to

world championship surfing. Yet months of rehab, plus

see Birmingham City FC sporting the logo

boatloads of determination and family support, not only

of brain injury charity Headway at a recent

carried him back to the sport he loves – but to the top of

Championship game. No5 Barristers’

the Champions Tour leaderboard. His recent victory at

Chambers forfeited its back-of-the-shirt

the season opener was a great advert for neuro-rehab

sponsorship to make way for Headway,

and an inspiring tale for people dealing with

helping to raise awareness of brain injuries in

brain injury.

sport. Well played all round.

Coming to terms with their new outlook is hugely challenging

Brain storm in America

be able to recite back to you verbatim a book

Ben Carson, neurosurgeon-turned-housing

they read 60 years ago. It’s all there. It doesn’t

to read 60 years ago), you can’t trigger accurate

secretary in the US government said in a

go away.”

recall of detailed memories with an electrode

speech recently: “The brain remembers

As Dan Simons, a psychologist at the

(and long-term memories aren’t stored in the

everything you’ve ever seen, everything you’ve

University of Illinois and a memory expert,

hippocampus), we don’t store a perfect and

ever heard. I could take the oldest person

helpfully pointed out (alongside many more

permanent record of our experiences (it’s not

here, make a hole right here on the side of the

in the Twitterati): “It’s utter nonsense.

all there just waiting to be probed), and you

head and put some depth electrodes into their

We can’t recall extended text verbatim

can’t just ‘learn how to recall it.’” A rare dose of

hippocampus and stimulate, and they would

unless we deliberately memorised it for that

truth in these muddled times!

62

NRTIMES

purpose (certainly not books we happened

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