NR Times Summer '17 edition

Summer 17

neuro rehab

NR

issue 3

times

QUARTERLY

spinal injury crisis Action plan for a fractured system

trouble abroad

When foreign accents appear overnight

out of the abyss Global locked-in rescue mission

brighter future

picturing a life beyond limits

justice fight why unfair trials must stop

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welcome

EDITOR'S NOTE

Welcome to the summer '17 edition of NR Times, your quarterly update on the latest developments in neuro-rehab for brain and spinal injury professionals.

Two rarities occurred at a neuro conference recently. Firstly, the scourge of the stressed-out events manager, empty chairs, were nowhere to be seen.

But, even more unusual, was the phenomenon of delegates filling every inch of floor space by sitting on the carpet, unable to find a seat.

Others peered through open doors, hanging on the words of each speaker.

If there were rafters at London’s Excel Centre, no doubt they’d be hanging from them too.

The jam-packed nature of each session at the European Neuro Convention bodes well for the outlook of neuro-rehab.

Most talks, ranging from stroke and virtual reality, to the strange cognitive abilities of limbs, were focused on the future.

The majority of attendees we spoke to were there to learn new ways of improving rehab outcomes.

The overriding mood was that of optimism – that technology and advances in neurological knowledge are conspiring for the greater good.

In putting together this issue, there is certainly a feeling that we are approaching what author Malcolm Gladwell calls ‘the tipping point’.

Lots of individual pockets of activity are gradually building up to a critical mass that will eventually tip the scales.

The result could be a sudden gear shift as our ability to tackle neurological diseases accelerates.

That may be a few years away, but our feature on TMS technology is a great example of this sense that things are speeding up.

The magnet-based technique has been around for hundreds of years, if you take it back to its very roots.

Yet the neuroscientists and tech geniuses who’ve been messing around with it in labs all over the world for decades, now have us on the verge of a TMS revolution.

Giving power back to the paralysed is just one of the amazing possibilities it presents.

The neuro-rehab garden isn’t entirely rosy, of course. Clients with neurological conditions and injuries continue to be let down, misunderstood and misdiagnosed. Fortunately, determined individuals and groups are playing their part in contesting these problems.

In this edition we uncover worrying failings in the criminal and civil justice systems, which are putting the brain injured at risk. We also learn of a looming spinal injuries crisis and the need for changes to the treatment of locked-in syndrome. Experts in the field, and patients who came out of the other side, have the answers to these issues - if only authorities would listen to them. On these pages you'll also find updates on the latest treatments, trends and research changing the neuro-rehab world.

We hope you can fit NR Times into your suitcase and poolside reading schedule - as you recharge your batteries over the summer.

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. Features labelled 'sponsored' are paid advertorials which support the production of this magazine.

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contents

06

news The latest from the world of neuro-rehab

18

22

out of

the abyss The woman on a world mission to rescue locked-in patients

justice fight How court case failings are disadvantaging the vulnerable

34

trouble abroad after injury Navigating the syndrome that turns the brain injured into foreigners overnight

26

tms tipping point On the eve of a brain tech revolution

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contents

cover story

40

talking

30

the talk Communication problems and how to approach them

Picturing a brighter future after injury

44

injury crisis World expert delivers his plan of action as NHS struggles with spinal cord injury surge

50

social media menace Fighting the predators threatening the online safety of your clients

56

events Dates for your diary in the months ahead...

58

clocking off

Postcards from the sidelines of neuro-rehab NRtimes 05

analysis

Where do we go from here?

After the parliamentary turbulence of the last quarter, what does the new political landscape mean for neuro-rehab? Andrew Mernin reports This year’s Queen’s Speech almost passed by unnoticed.

The traditional state opening of parliament with its customary pomp and ceremony was, for once, a much more low-key affair.

It wasn’t simply the absence of a crown or a horse-drawn carriage that raised eyebrows, but the curtailed breadth of the government’s legislative plan for the next 12 months, announced by Her Majesty in parliament this June.

Those with an interest in mental health and neuro-rehab will have noticed the inclusion of a mental health bill.

It stood out because it was a rare pre-election promise, made by the prime minister during Mental Health Awareness Week, that made it to the Queen’s Speech. Others fell by the wayside, as political collateral damage from a bungled election campaign and resulting hung parliament.

Campaigners have waged a decades-long fight for funding and esteem for mental health among successive governments in England and Wales. They will be hoping the inclusion of a mental health bill marks an inflection point.

High profile campaigns by charities including MIND have caught the public’s attention and propelled mental health up the political agenda.

Recent interventions, including by Prince Harry speaking of his own battles with depression following the death of his mother, have further removed the stigma that mental health has

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struggled to shake off.

The link between brain injury and subsequent mental health diagnosis should not be underestimated. As the brain injury association, Headway, points out “brain injury can lead to mental health issues developing” or can exacerbate pre-existing conditions, including depression, anxiety, anger, cognitive issues and problems with regulating behaviour.

Such cases of dual-diagnosis come with the added challenge of seeking the right support from entirely separate parts of the health system. Doing so locally is beyond the experience of those who rely on such services.

Joining up treatment and support programmes for people suffering new or increased mental health issues arising from brain injury must be part of this new kaleidoscopic government’s review of mental health.

The legislation has been left largely unchanged in England for 34 years. Despite spending £11.4bn in 2016/17, and a further £1bn every year by 2020/21, mental health remains underfunded.

According to NHS England, mental illness accounts for almost a quarter of the burden of disease at around 23 per cent, but receives just 11 per cent of NHS funding.

Meanwhile nine out of 10 patients with diabetes are in receipt of treatment, but just over a quarter of people with mental illness receive treatment for their problems.

Brain injury group comes back from the brink

But in a further sign that the tide could be turning, cash for mental health was a notable inclusion in the deal struck up between the Conservatives and their now even closer political pals, the Democratic Unionist Party.

Theresa May’s early election gamble might cut short her premiership and the ‘dementia tax’ manifesto is described as the new longest suicide note in history. But it could prove to be a moment when mental heath finally reached a new height in parliament.

The Tory DUP deal includes £10m per year over five years to pay for mental health provision in Northern Ireland.

That it featured in such a make-or-break deal of political horsetrading is in itself a positive signal of just how high up the agenda funding for mental health has risen.

There is no shortage of areas in which to spend the money.

Chief among them will be the growing trend of long distance treatment, described by the British Medical Association as “endemic”. The union says the number of out-of-area placements – the practice of sending mental health patients far away from friends and family to receive care – soared by 39 per cent from 4,213 adults in 2014/15 to 5,876 in 2016/17.

With a newfound commitment and seemingly the cash to follow for mental health, health ministers’ in-trays will fill up quickly with a string of issues to resolve.

The launch of a new brain injury group backed by politicians is back on track after being thrown off course by the snap election.

The all-party parliamentary group (APPG) focused entirely on brain injury was due to be launched at Westminster in April, with Labour MP Chris Bryant (pictured) chairing it. The involvement of Conservative MP John Hayes and Baroness Tanni Grey-Thompson had also been secured as part of its leadership.

Then came news of the election, and the group was parked – much to the disappointment of charities involved, especially as 13 years had passed since the last brain injury APPG disappeared.

With Chris Bryant contesting his seat in Rhondda and parliament dissolved, the group’s future looked uncertain.

Fears that momentum had been lost look to have been misplaced, however, with Chris Bryant’s office confirming to NR Times that the group is definitely going ahead as planned.

Both Bryant and John Hayes reclaimed their seats in parliament and roundtable discussions for the group are now scheduled for September, after summer recess.

By this time, discussion points might include the ongoing audit of UK rehab services commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit (NCA) Programme.

The National Clinical Audit of Specialist Rehabilitation following major Injury (NCASRI) is the first to examine the provision of specialist rehabilitation following major trauma in adults. As it approaches the end of its second year, a decision is due in autumn on whether to extend it from three to five years. One worrying trend identified so far is a lack of involvement of rehab medicine (RM) consultants at major trauma centres. NHS England specifies that RM consultants must confirm the category of need of complex rehabilitation cases and “expedite their referral and transfer to an appropriate specialist rehabilitation service”.

However, the NCASRI audit shows a lack of their input into decision-making at many of MTCs. “We therefore need to explore alternative approaches to the identification of patients with complex rehabilitation needs,” a recent NCASRI update noted.

Provision was particularly poor in London where there was only one major trauma centre-funded session for an RM consultant across the four large major trauma networks in London.

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From brain injury to suicide – a tragic, cautionary tale of let downs and hidden risk A brain injured Somerset man who committed suicide was failed by a system beset with disjointed decision-making and poor sharing of information, a damning report has revealed.

Somerset Safeguarding Adults Board’s (SSAB) 2016 review into the death of ‘Tom’, paints a depressing picture of a collective of professionals being unable to handle the often-chaotic lives of people with brain injuries and additional drug and alcohol issues.

Tom died in 2014, aged just 43, prompting a serious case review which was finally made public in June following an embargo.

At 22 he suffered a head injury in a road traffic accident and subsequently developed epilepsy, chronic insomnia, depression and muscular and skeletal pain. To those that knew him, however, he was “intelligent, politically aware and anti-establishment”.

Yet, amid intermittent drug and alcohol problems, he was also known to have come to the belief that his life was not worth living following his brain injury.

The report uncovers a glaring lack of in-depth mental health assessments,

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which was seemingly unquestioned by professionals, despite their knowledge that he was “situationally incapacitated” by exploitative and drug using peers.

The Somerset Partnership Trust concluded that Tom had capacity when assessed by Mental Health Services in November 2013, seven months before his death. This was at odds with the opinion of Tom’s family and Musgrove Park Hospital, which said Tom was “identified as having a number of factors that may have impacted on his capacity for some decision-making. This included brain damage…epilepsy and drug/alcohol use.”

The report states that Somerset County Council’s adult social care, Somerset Partnership Trust, and health and social care body Turning Point: “Did not provide a service to a man who was brain injured, who was depressed, who could not sleep, who abused alcohol and drugs and who expressed his intention to take his own life.

He was intelligent, politically aware and anti-establishment "Services do not easily respond to individuals whose lives appear chaotic and who are barely compliant.”

The review also shows how concerns from various parties were not acted upon.

It notes: “[The charity] Headway had bent its own rules for over 13 years to support Tom; Housing Options officers had sought to protect him from harmful relationships; and the police had sought, inter alia, to protect visiting professionals from his hazardous living circumstances.

“So although no single agency could address Tom’s support needs, it appears that nothing impelled or even required health and social

care services to work collaboratively within and across their own provision to provide direction and resolution.

"There was, and there remains, a strong sense that a man with a brain injury, depression and addictions requires the sustained assistance of mental health services – and yet Tom was deemed ineligible.”

The report also found that the “continuities and discontinuities” spanning Tom’s brain injury were not known to professionals. He frequently said his life was not worth living but his final risk assessment did not take account of his wish to end his own life.

Report author Margaret Flynn also highlights apparent buck-passing between those that might have better intervened. In October 2013 Headway sought health and social care assistance – and a social worker suggested contacting a GP. Somewhat farcically, the GP then suggested calling on a social worker – as well as Tom’s sister.

Other conclusions include the fact that requests for help from Tom’s family did not result in integrated working. Also, practices and cultures of organisations and professional groups got in the way of grounded decision-making.

The report sets out a series of guidelines

Services do not easily respond to individuals whose lives appear chaotic and who are barely compliant

– some of which have since been followed up. One recommendation which may have a wider impact on neuro-rehab professionals is that a person’s traumatic brain injury and mental capacity should be “foregrounded in all professional assessments and referrals”.

It also suggests that family involvement is prioritised “with a view to understanding the continuities, the discontinuities and the unpredictable and complex process of reconstructing the self which arise from such a critical injury."

Other recommendations largely focused on sharing Tom’s story in various ways among professionals and incorporating it into ‘multi-agency’ training.

Since the report was written, some of the authorities involved have issued public responses.

The SSAB - the statutory partnership which includes Somerset County Council, Avon and Somerset Constabulary and the CCG to protect vulnerable adults from harm – expressed sympathy and vowed that lessons had been learned.

Chairman Richard Crompton, said: “Safeguarding adults is everyone’s business and an absolute priority for the board and its partners, as it should be for everyone, and this review has highlighted a number of areas which require our continued focus and attention.

"The review into Tom’s death made a number of recommendations, which the SSAB has fully accepted and will continue to oversee and monitor.”

While the report analyses specific failings in Somerset, it also serves as a stark reminder to neuro-rehab professionals of the risk of suicide after brain injury.

Suicide and head trauma have long been linked, with evidence growing about the extent that brain injuries increase suicide risk. In June, the American Journal of Preventative Medicine published a study which identified brain injury as one of several illnesses linked to heightened suicide risk. While sleep disorders and HIV/AIDS reportedly represented a two-fold increase in suicide risk, it estimated that brain injuries made individuals nine times more likely than the norm to take their own life.

The study included 2,674 individuals who died by suicide between 2000 and 2013, along with 267,400 controls matched on year and location in a case-controlled study.

A large epidemiological survey carried out in Denmark in 2001, which covered 145,440 head-injury patients, also noted that suicides were more than double the norm after skull fracture and quadruple after brain haemorrhage.

Even mild trauma has been linked to suicides by scientists. A Canadian study last year hypothesised that people who sustain a concussion increase their risk of suicide three-fold.

Out of 100,000 concussion patient records, there were 31 suicides – three times the population average – it was reported in the Canadian Medical Association Journal.

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Prison plan launched amid ongoing uncertainty A new project which aims to improve the way brain injuries among male prisoners in England and Wales are handled, is to be launched later this year.

Her Majesty’s Prison and Probation Service (HMPPS) recently announced four new funds designed to encourage voluntary organisations ‘to pilot, develop and test to provide a proof of concept’ in different areas.

One strand, which is now closed to bids, covers the remit of better understanding the needs of male prisoners with acquired or traumatic brain injury.

Other areas of focus include violence amongst young black, Asian and minority ethnic (BAME) people in prison as well as resettlement for BAME people back into the community, and services for people with learning disabilities and autism.

At the time of writing, HMPPS is considering

bids for the brain injury project, which has been allocated £203,000 in grant funding.

Meanwhile, brain injury interest groups have a new MP to lobby to tackle the disproportionate amount of brain injured adult and young offenders going through the prisons system.

Some studies suggest as many as 60 per cent of prisoners and 30 per cent of young offenders have a history of traumatic brain injuries. Better screening, more access to specialist interventions like speech therapy and training for prison staff on the challenges brain injured people face, are on the wish-list of various charities and bodies vying for change.

Their requests for action will now be directed to David Lidington, the MP for Aylesbury and the new justice minister, having replaced Liz Truss.

No doubt, in his first weeks in office, he will be under pressure to give some clarity on planned prison reforms which appear to have been sunk by the election.

The reforms were criticised, but were at least a foundation on which to build The Prisons and Courts Bill, which set out how the government planned to improve the prisons system, was dropped ahead of the dissolution of parliament.

The government’s planned reforms were criticised by the Criminal Justice Acquired Brain Injury Interest Group (CJABIIG) for failing to address the link between brain injuries and offending. However, some of the fundamental changes necessary were covered and it was hoped that it was a foundation on which to build measures to address the issue of brain injuries in prisons.

Neuro-rehab organisations will be watching Lidington with interest in the coming months.

Study could shape MS treatment choices

ABI app launched

MRI scans can help to predict how multiple sclerosis (MS) will progress, new research suggests. A study, at the Queen Square Multiple Sclerosis Centre, spanned 15 years and involved 164 people with clinically isolated syndrome (CIS).

People with CIS have experienced one episode of neurological symptoms and often go on to be diagnosed with MS. Researchers looked back at MRI scans carried out when people were first diagnosed with CIS. They found that early spinal cord damage was a sign that people were much more likely to go on to develop the secondary progressive form of MS. They also discovered that having a spinal cord MRI scan not only helped with diagnosis, but also gave an insight into the level of disability a person was likely to face in the future.

The study was funded by the MS Society and led by Dr Wallace Brownlee and Professor Olga Ciccarelli.

Dr Brownlee said: “We already use MRI scans to diagnose MS and to monitor the course of the disease. Our findings suggest that MRI scans may also help predict long-term prognosis for people with early symptoms of MS.” Progression is variable in MS and can be influenced by factors such as age, sex and initial symptoms. Currently, there is no way of predicting how a person’s MS might progress. It is thought that this new research could help to influence treatment choices. The results of the study were announced at the MS Society’s research conference, MS Frontiers 2017.

An app for young people with acquired brain injury (ABI) has been launched by the Brain & Spine Foundation.

My Brain and Me works as a mood diary and information resource to help children and young people manage their ABI. Users can keep in touch with how they’re feeling by logging their entries in the diary.

The app also provides tips for children to help them when they are feeling down or anxious.

Users can also learn about the different parts of the brain and how they affect day-to-day life.

A ‘Friends’ section can be used to save contacts and emergency phone numbers, while the app comes with saved numbers of charities and organisations that can help support children with ABI. Users can also add to the section by saving their own emergency contacts.

The app is free and available to download for iOS devices on App Store and for Android on Google Play.

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FIFA drops the ball on head injury measures

Official guidelines on treating footballers with possible concussions weren’t followed by governing body FIFA during the last World Cup in Brazil, research has found.

Canadian neurosurgeon Michael Cusimano, who led the study, said FIFA had set a “bad example” on how to handle potential brain injuries.

Researchers reviewed video footage of all 64 games played in the tournament.

They found that 61 players had 81 head collisions in 72 separate events, or 1.13 times per match. Of the 81 collisions, 45 players had two signs of a concussion and 22 exhibited three or more signs. The signs include being dazed, confused, clutching their heads or falling unconscious. But Dr. Cusimano’s review found that healthcare personnel assessed players on the sidelines in only 12 cases, or after 15 per cent of head collisions, and the length of those assessments ranged from 64 to 180 seconds. “I find it hard to believe you can do a proper assessment in a noisy environment like a soccer pitch in 180 seconds,” Cusimano said.

Airline toxins connected with neurological turbulence

The cabin air inhaled by passengers on

report, authored by Susan Michaelis from

commercial airplanes has been linked to

the University of Stirling, in association

neurological problems in new research.

with Vyvyan Howard from the University of

According to the Public Health Panorama

Ulster and Jonathan Burdon, a consultant

report cited by the World Health

respiratory physician from Melbourne.

Organisation, the “bleed air” circulating

“Both acute and chronic exposures to

within flight cabins is contaminated with

neurotoxic and a wide range of thermally

neurotoxins and other chemicals from engine

degraded substances were confirmed, along

oil and hydraulic fluid.

with a clear pattern of acute and chronic

“Bleed air” is a system that provides the cabin

adverse effects.”

with ventilation and is used to pressurise the

Michaelis added: “There is an obvious need for

cabin, the report explains.

a clearly-defined, internationally-recognised

In 2015, more than 3.5 billion passengers

medical protocol, occupational syndrome and

and 500,000 pilots and crew members were

disease recognition.”

reportedly exposed to low levels of such

Recent years have seen growing numbers

materials in the air.

of campaigners pushing for more action on

Researchers looked at over 200 airline

protecting passengers and airline staff from

workers who had been exposed to such

contaminated cabin air.

toxic air. The health effects recorded

The Civil Aviation Authority (CAA), however,

ranged from nose, eye and throat irritations

has always insisted there is no evidence of

to neurobehavioural, neurological and

long-term health effects.

respiratory symptoms.

After this latest study, a CAA spokesperson

“Aircraft air supplies contaminated by

said: “Our priority is always the safety of

pyrolysed engine oil and other aircraft

passengers and crew and we continue to work

fluids can reasonably be linked to acute and

with airlines, manufacturers and international

chronic symptoms, findings and diagnoses,

regulators to drive improvements in safety

thus establishing causation,” read the

standards across the industry.”

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Centre closes due to cost and recruitment pressures A brain injury and mental health centre in Swindon is to close at the end of the summer, its owner has announced.

The Brain Injury Rehabilitation Trust (BIRT), part of national charity The Disabilities Trust, is to close Chalkdown House.

Almost 40 staff are at risk of redundancy, although the trust is consulting them about redeployment opportunities within the wider organisation, ahead of the closure date of 31 August.

Five people undergoing rehabilitation at the centre will

We have been unable to recruit the clinical staff required

be moved to other placements by the NHS organisations funding their care.

The families of people at the centre have been informed, along with the funders, and the trust is discussing with the families the most sensitive and appropriate way to tell their relative about the planned closure.

The charity is concerned that the centre, which opened in 2013 as an independent hospital with 20 beds, will not in the longer term be able to sustain the quality of brain injury rehabilitation that the trust expects.

Due to pressures and changes within the NHS, admissions have fallen and the centre has always struggled to recruit clinical and managerial staff, given the high demand for these posts from other local employers, BIRT said in a statement.

Challenges and opportunities come under the spotlight The impact of health and social care cuts on people with acquired brain injuries will come under scrutiny at an event later this year.

Innovations in assessment and rehab will also be discussed at the UK Acquired Brain Injury Forum’s (UKABIF’s) 9th annual conference.

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As a result of these factors Chalkdown House also makes significant financial losses.

Penny Blackmore, interim director of BIRT, said: “This has been a very difficult decision for the trust to take and one which we have made with great reluctance.

"Despite everyone’s best efforts, we have been unable to generate the number of admissions or to recruit the clinical and managerial staff required to sustain the quality of the service for the longer term.

"There has been increased pressure on the NHS which funds placements at the service, along with changes to the way brain injury rehabilitation is commissioned."

She added: “The local employment market means there is significant demand for psychologists and therapists, and we have found it very difficult to recruit and retain those staff.

“This is a sensitive time for everyone involved - for the people at the centre, their families and

for the affected staff, but we genuinely feel that this is the right decision.

"The trust will provide all the advice and support we can over the coming months.”

BIRT had rather better news to report from Devon in the last quarter. Its facility, The Woodmill in Cullompton, has received an ‘Outstanding’ rating by care watchdog the Care Quality Commission (CQC).

According to national statistics, a mere two per cent of all CQC reports receive an outstanding grade. The 19-bed centre helps people with a brain injury recover lost skills and re-train their brains to be able to regain as much independence as possible. Chief executive of the Disabilities Trust, Irene Sobowale, said: “This is the equivalent of an Olympic or Paralympic gold medal for us and I am enormously proud of the Woodmill, especially our amazing staff team. We have lots of celebrations planned over the summer."

Navigating the Future for Brain Injury Survivors, on 13 November in London, features talks on cognitive enhancers and functional MRI in traumatic brain injury, technology which monitors rehab and virtual reality as a translational medicine.

Transitions of care after hospitalisation for TBI and moral issues which arise in the "best interests" framework are also on the agenda.

Speakers include representatives of Addenbrooke’s Hospital Cambridge, the University of East Anglia’s neuroscience team and Oslo University. A special guest speaker is also soon to be announced.

The one-day conference, at the Royal Society of Medicine in London, incorporates the final of the UKABIF Film Awards 2017.

The short film awards aim to raise awareness of brain injury by recognising filmmaking that inspires and educates. The winner receives £750 and a trophy, with £250 up for grabs for runners up.

For full details of the conference and the award visit www.ukabif.org.uk.

No justice for brain damaged victim

A victim of the Hillsborough disaster, who suffered brain damage and died four years after the tragedy, has not been factored into manslaughter charges brought against police chief David Duckenfield.

The events at the Leppings Lane end in 1989 put Tony Bland in a persistent vegetative state until the High Court approved his right to die in 1993. Former chief constable David Duckenfield, match commander on the day of the disaster, faces manslaughter charges by gross negligence of 95 men, women and children. Due to a legal technicality regarding the amount of time between the disaster and when Bland passed away, no charges can be brought over his death.

Teenage obesity linked to stroke risk Children who become overweight in their teenage years will reportedly be more prone to stroke in later life.

A study, published in the American journal, Neurology, involved 37,669 Swedish males whose body mass index (BMI) was measured at age eight and again at age 20. From age 20, they were followed for an average of 38 years.

During that time, 918 men had strokes.

Men with excessive BMI increase from childhood to age 20 had a higher risk of stroke

than men with average BMI increase. For every two-point increase in BMI, men were 20 per cent more likely to have a stroke.

"The stroke rate has been increasing among young adults even while it has been decreasing for older people," said study author Jenny Kindblom of the University of Gothenburg in Sweden. "While we don't know the reasons for this increase, it has occurred at the same time as the obesity epidemic."

She added that the study was observational and does not prove that the increase in BMI causes the increase in stroke, it just shows the association.

Kindblom said limitations of the study include the fact that researchers could not control the important risk factors for stroke such as smoking, exercise and high cholesterol and that the participants were mainly white men and the results may not apply to other groups. She also noted that the obesity rates in the study group of men born in 1945 to 1961 were lower than current obesity rates.

"Today's environment that is so conducive to obesity may even further heighten the relationship we saw between increase in BMI and risk of stroke," she said.

The stroke rate has been increasing among young adults even while it has decreased for older people Most baby brain injuries avoidable, says report

The majority of baby brain injuries or fatalities in labour are avoidable, the results of an investigation suggest. The Royal College of Obstetricians and Gynaecologists analysed 1,136 stillbirths, neonatal deaths and brain injuries that occurred on UK maternity units during 2015.

Three in every four of the babies may have had a different outcome had they received different care, the report said.

Problems with accurate assessment of foetal wellbeing during labour and consistent issues with staff understanding and processing of complex situations, including interpreting baby heart rate patterns, were cited as significant factors.

"Although the UK remains one of the safest places to give birth, serious incidents do occur, some of which could be prevented if different care were given," said the report.

Of the 1,136 cases investigated from the year-long period, 854 babies had severe brain injuries.

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MS drug moves a step closer to NHS use The European Medicines Agency has recommended that a licence should be granted for the drug cladribine for the treatment of highly active relapsing multiple sclerosis.

The European Commission will now consider whether to grant a licence following the recommendation. Cladribine will then have to be appraised by NICE and the Scottish Medicines Consortium to determine availability in the UK. NICE has started the appraisal

Scientists make spinal cord breakthrough

process, in which the MS Trust is involved, and a decision is expected to be published in

Researchers have uncovered how nerve cells in the

"We've made an important step in understanding how

February 2018.

spinal cord are organised in precise patterns during

the diverse cell types in the spinal cord of a developing

In 2011, an application for a

embryo development - a finding that could give insight

embryo are organised in a precise spatial pattern.

licence was turned down due to

into regenerative medicine.

The quantitative measurements and new experimental

concerns about a higher risk of

As embryos grow and develop they need the right cell

techniques we used, as well as the combined effort

cancer in people taking cladribine

types to end up in the right places inside forming organs.

of biologists, physicists and engineers were key.

in clinical trials. Further

This is particularly important in the spinal cord where

This allowed us to gain new insight into the exquisite

analysis of clinical trial data and

different nerve cell types must be accurately positioned

accuracy of embryonic development and revealed that

comparison with data from trials

so that circuits can assemble properly to control muscle

cells have remarkable ability of to orchestrate precise

of other disease-modifying drugs

movement. But until now the mechanism underlying

tissue development," said Anna Kicheva, group leader

suggests that there is not an

nerve cell organisation in the spinal cord has remained

at IST Austria.

increased risk of cancer in people

poorly understood.

"We have shed light on the long-standing question of

taking cladribine.

In a study, researchers at the Francis Crick Institute, the

how developing tissues produce the right cells in the

In large clinical trials, cladribine

Institute of Science and Technology (Austria) and Ecole

right place in the right numbers," said James Briscoe,

was found to reduce the risk of

Polytechnique FĂŠdĂŠrale de Lausanne (Switzerland) report

group leader at the Francis Crick Institute. "It's likely

relapses by 58% compared to

that cells destined to become nerve cells in developing

that similar strategies are used in other developing

placebo.

mouse embryos use two different signals spreading from

tissues and our findings might be relevant to these

Cladribine also significantly

opposite sides of the spinal cord - the back and belly side

cases. In the long run this will help inform the use of

reduced the risk of increased

- to measure their position accurately. Based on this data,

stem cells in approaches such as tissue engineering and

disability which persisted for

they turn into the appropriate nerve cell type.

regenerative medicine. However, there is still much more

three or six months.

The research was funded by the European Research

to learn and we need to continue developing

Among the main side effects

Council and Wellcome.

these interdisciplinary collaborations to further our

reported in clinical trials were

The team of biologists, physicists and engineers found

biological understanding."

reduced white blood cell counts,

that the amounts of the two signals originating from the

The paper, Decoding of position in the developing

which in most cases were mild or

back and belly sides of the body affect gene activity in

neural tube from antiparallel morphogen gradients, is

moderate but were considered

developing nerve cells. Based on this gene activity in early

published in Science.

more severe in about 25 per cent

development, the cells turn into the appropriate nerve

See page 44 for an update on the future of spinal cord

of those taking cladribine.

cell type for that position in the spinal cord.

injury care.

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company news sponsored feature

Fast-growing provider acquires four neurological care centres

A new specialist neurological care provider has built up a portfolio of four UK centres and 200 beds, just a few months on from its launch.

Elysium Neurological has been launched as a new division of Elysium Healthcare and has quickly acquired a network of neurological care facilities across the country.

Elysium Healthcare was itself only formed in December; bringing together 10 sites from Partnerships in Care and 12 from the Priory Group, after their divestment from US parent company Acadia.

The group’s initial focus was largely mental health but, motivated by the widening gap between UK capacity and demand for neuro-rehab, decided to create Elysium Neurological.

The new enterprise has since snapped up Badby Park (Northamptonshire), Stanley House (Herefordshire), Adderley Green (Staffordshire) and The Bridge (Middlesbrough, North Yorkshire).

The centres comprise a total of over 200 specialist neurological care beds and are all well equipped with superb facilities.

Elysium Neurological provides specialist rehabilitation and complex care for people with neurological illnesses, acquired brain injuries and spinal injuries.

Neurological therapy teams use advanced techniques to deliver customised programmes developed for the individual and measured using nationally accredited outcome tools.

Features include fully-equipped gyms, accessible kitchens, treatment rooms and a range of mobility equipment. Further investment at the centres is planned in the coming months, with Badby Park set to install a hydrotherapy suite and a new therapeutic suite.

Elysium CEO Joy Chamberlain said: "Our goal is to make a real difference to the quality and delivery of care across the whole care pathway. We focus on highly specialised services which are complex to deliver. Our clinical teams lead and innovate to deliver a truly person-centred service where each individual is at the heart of everything.

"We want to work in partnership with local services to complement what they have and provide the services that are in the greatest need."

For more information contact Rachael Chamberlain on 07387 108625, email Rachael.Chamberlain@elysiumhealthcare.co.uk or visit www.elysiumhealthcare.co.uk.

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insight

Brain injured people going through the justice system are being unfairly disadvantaged by a major flaw in legislation.

Andrew Mernin meets one professional who's fighting back.

court in the storm

W

hen the rape of a Manchester woman with learning difficulties came to trial in 2012, everything hinged on her memories of the ordeal.

In the cold light of the courtroom, under intense scrutiny from the defence barrister, her muddled mind began letting her down.

Timelines became skewed, details foggy and responses inconsistent. Yet somewhere inside was the now proven truth about the cruel attack she endured.

Enter Louise Sheffield, a registered intermediary, accredited by the Ministry of Justice (MoJ) to support vulnerable witnesses.

“A man she knew had been to her flat in the afternoon, with his dog," she says.

"He’d sat outside drinking cider and she was inside, talking to him through an open door. He returned that evening when it was dark without his dog, went into her flat and sexually assaulted her.

“The barrister was flitting between the afternoon and the evening and I could see she was getting really mixed up. She couldn’t tell the difference between which event he was

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talking about. I intervened and spoke to the judge, and then the jury stepped out.

"I asked if I could use a different approach to help her understand exactly what she was being asked.”

An intermediary is an impartial servant of the court whose role is to ensure children and vulnerable adults are able to give coherent and accurate evidence.

In this instance, Louise explained the four facts from the afternoon - the man, dog, cider and sunshine - to the woman and wrote them on a piece of paper. On a separate sheet she wrote the evening’s key words; dark and man.

The sheets were placed at opposite ends of a table. Every time the barrister referred to a time period, Louise made an exaggerated hand movement to draw attention to the relevant piece of paper.

“From that point on her evidence was crystal clear, consistent and utterly compelling. She knew exactly where his hands had been and how her clothes had been taken off and could describe the assault in vivid detail. The jury took two hours to convict the man.”

Intermediaries for vulnerable adults – including those with brain injuries – are currently only the right of witnesses in a criminal court. Much to Louise’s concern, criminal court defendants and vulnerable adults in civil courts are not entitled to intermediaries.

“People with acquired brain injury are statistically more likely to be the victim of a crime, but also to be accused and convicted of crimes, so we need intermediaries all round.”

Hate crimes in England and Wales against people with disabilities surged by 45 per cent to 3,629 in 2015/16. Meanwhile, disproportionate amount of brain injured people in the prison system is well documented. Various studies put the proportion of adult prisoners with a history of traumatic brain injury as high as 60 per cent.

Neutral intermediaries on either side of the courtroom divide are therefore needed, says Louise.

As one of the first cohort of intermediaries trained in 2004 following legislative changes, she has seen many examples of the power of

insight

the role to ensure trials are fair.

“Most intermediaries are speech and language therapists or occupational therapists like me.

Some are also teachers and social workers.

We bring together legal training with our understanding of communication.

“A barrister might have a series of ‘do you’ questions, for example. If they’re reeled off one after the other, a vulnerable person might develop a pattern and say ‘yes’ even if that’s not what they mean. That’s the type of questioning we’d intervene on.”

Intermediaries are strictly impartial and must never talk about the details of the case with their client beforehand.

They do take them through a courtroom familiarisation process and look to eradicate anxiety where possible.

While access to intermediary services is limited by a current lack of legislation, there are signs that things could change.

“The Coroners and Justice Act 2009 mentions intermediaries for vulnerable defendants. But this section of the legislation has never been enacted. It’s written about in the law but has never been rolled out.”

Recently published Criminal Practice Directions (CPDs) – supplemental protocols to court procedures – also reference intermediaries for defendants. So far, however, Louise believes current guidelines fall short.

Although intermediaries are not a right for defendants, access to them is increasingly being gained via the Human Rights Act. But a CPD introduced last year stated that only in exceptional circumstances should a defendant have an intermediary throughout a trial.

“This in itself is a problem. You have a brain injured defendant sitting in the dock.

He sees the backs of the barristers’ and solicitors’ heads and the judge and the jury.

He might have six weeks of evidence, with different witnesses coming in and out and all of this information to take on board.

Then he goes to give his evidence. He might not have a clue what’s going on and could be so easily led.

“Having an intermediary there while he’s giving evidence is better than nothing, but what about the weeks leading up to it when

There have been three-year-olds cross examined in the Old Bailey, after intermediaries were refused.

The transcripts are shocking.

he’s been sitting listening to stuff that he’s not understood – stuff that he’ll be cross-examined on?”

The reason for this apparent unfairness in the criminal justice system is obvious to Louise: “To be really cynical, I think it’s a financial argument. The MoJ has trained intermediaries for vulnerable witnesses, not defendants. So, it would have to fund the training to meet a sudden rise in demand.

Currently there are only about 120 registered intermediaries in England, Wales and Northern Ireland. That’s 120 people for every child and vulnerable adult involved in a crime.”

The average cost of intermediary assignments could also spiral: “An intermediary for a witness will do a half-day assessment, then write a report, which is another half a day.

A witness will then give evidence over a day or two. A defendant’s trial could last six weeks, so the costs of providing an intermediary for a defendant and a

witness are poles apart. It’s not fair for vulnerable defendants but it’s cheaper.”

The push to get a fairer deal for vulnerable people in the courts system is also hindered by good, but misplaced, intentions by judges. Various training courses are available to the judiciary in how to better understand the challenges faced by people with brain injuries. “This can be a double-edged sword. We find that when an intermediary request comes through, judges

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Legal view

insight

Why vital role of intermediaries can be ignored no longer

Louise Sheffield

John Davis has been representing people who have sustained life-changing neurological injuries for over 30 years. The senior consultant at law firm Sintons and Fellow of the Association of Personal Injury Lawyers urges lawyers to wake up to the value of working with intermediaries on cases.

He says: "In many criminal cases a registered intermediary will be the difference between a witness being able to give evidence in court or not and an intermediary can often play a vital role in helping to make the criminal justice process accessible to vulnerable people.

“By contrast, in the civil justice system, there is no general acceptance by the courts of the valuable role that intermediaries can play in assisting vulnerable people, such as claimants with cognitive difficulties after a brain injury, to give evidence in court.

“There is little justification for the different approach between the civil and criminal courts and, in my view, lawyers need to recognise the importance of intermediaries and to become willing to involve them in their cases."

that have been through that training will think ‘it’s okay, I’ve done the training, I can handle this’.”

Such training may be adequate in explaining the basics, says Louise. They will learn to give the vulnerable person frequent breaks and to avoid pre-ambles like ‘I put it to you that’ in questioning.

Yet it is not detailed enough to explain the many nuances of eliciting factual information from vulnerable people.

“For example, tag questions - where a statement is made to set the scene, followed by a question - are generally avoided because they are seen as leading you to a certain answer. Actually, tag questions can be helpful if handled correctly.

When the delivery is properly paced, slowly, with pauses, it helps the person to become orientated and delivers the question in chunks. That would be something like, ‘you live in London (pause), with your daughter (pause), what is her name?’

“The danger with a bit of training is that it covers things with a broad brush. There have been three-year-olds cross-examined in the Old Bailey after intermediaries were refused because the judges said they’d done the training. The transcripts are shocking.”

The case for intermediaries in the criminal justice system is also muddied by misconceptions about appropriate adults.

“I feel really passionately that case managers and therapists working with people with acquired brain injury should know about intermediaries.

I’m also a case manager and have used intermediaries four or five times when my clients have been arrested or in danger of it. I’ve been told so many times by case managers that ‘we’re just going to get an appropriate adult instead’. They do a good job but are not trained communication specialists. They are concerned with the general

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wellbeing and rights of the individual; have they been to the toilet, had regular breaks or been offered a phone call? They are not focused on how questions are being posed.”

In the civil courts, a number of factors are conspiring to create demand for intermediaries; although, to date, only one civil case involving an intermediary has made it to court. That was in January 2016, with Louise supporting a vulnerable claimant. She has had a further seven written reports accepted by civil judges on cases that have been settled before trial.

The new discount rate could play its part in bringing more intermediaries into civil courts.

When victims of life-changing injuries accept lump sum compensation, the amount they receive is adjusted according to the interest they can expect to earn by investing it. Courts apply a calculation called the discount rate – with the percentage linked to returns on the lowest risk investments, typically Index Linked Gilts. In March this year, this rate was lowered from 2.5 per cent to minus 0.75 per cent. Compensation payouts will rise as a result. With more to fight for, defendant and claimant teams will potentially be looking to bolster their armoury with the use of intermediaries.

“I think it’s likely that we’ll see more defendants pushing aggressively to hear what the claimant has to say. In the civil case I was involved in, the defendant wanted the claimant on the stand as they thought he was making his story up and wanted to expose him as a fraud. We need more claimant solicitors to ask for intermediaries and to see putting the claimant on the stand as an option, rather than a risk. Currently many solicitors see it as being far too dangerous. They need to know that it can be done safely and fairly.

“I think we will see the emergence of more specially-trained civil court intermediaries in the future. They would need to be very knowledgeable about the civil litigation process and understand the objectives of different parts of the case, but I think it will gradually happen.”

Louise also envisages a role for intermediaries in other courtroom processes: “In future intermediaries could possibly facilitate expert witness assessments with the claimant. Often the experts for the claimant and defendant will get very different results, for obvious reasons.

Perhaps an intermediary could ensure these assessments are fair.”

comment

Why aggression requires positive approach Nurturing patient positivity to rebuild their life is the antidote to post-brain injury aggression, says Dr Keith Jenkins, lead psychologist at St Andrew’s Neuropsychiatry Pathway in Northampton.

Aggression management in brain injury cases is not simply about improving patients’ challenging behaviour. Its main aim should not just be dampening an individual’s impulsiveness or reducing the number of times their behaviour becomes an ‘incident’ or ‘recording’.

Neurobehavioural rehabilitation teams need to work on improving functional skills and independence, which in turn supports reduced aggression as the patient’s outlook, life and behaviour become more positively focused.

St Andrew’s works with many of the most challenged brain injured adults in the country, as well as people with a wide range of other neurological and mental illnesses. Often people come with multiple co-morbidities, such as substance abuse, epilepsy and a forensic history.

A recent evaluation highlights the magnitude of this work and our outcomes.

The standardised monitoring of 11 new patients in their first three months with us (Overt Aggression Scale Modified for Neurorehabilitation) recorded a total of 5,858 aggressive incidents. This covered aggression towards self, others and objects, as well as aggressive verbal behaviour. After nine months to a year with us, we had achieved a significant improvement (78.37 per cent) across the group; 1,267 incidents.

We also rated the same patients on the widely-used Functional Independence Measure + Functional Assessment Measure (FIM+FAM). In the first three months, we recorded a median score of 142/252 for the

Vocational activities are an important part of life at St Andrew's

group. After nine months to a year with us, we had achieved a significant improvement (20.43 per cent), with a median score of 185/252. The core of our treatment for patients with aggression involves positive behaviour support (PBS) using collaborative goal setting and an individualised programme of incentives, where appropriate. Patients are encouraged to become more aware of their behaviour and to recognise when it might go ‘off course’. Initially, this may involve programmed staff feedback, and over time we gradually move patients’ focus to rehabilitation, rebuilding positive things in their life and enhancing self-regulation.

We do not work with a catch-all approach, or rigidly push therapy or other activities onto someone who doesn’t want to take part.

Instead, we involve our patients in developing a PBS plan and care plans that focus on the things they value and acknowledge needing, and which nurture engagement.

They also share with us the things that irritate them, spark their aggression or help them remain calm. These details form the foundations of the PBS plan shared with all key staff.

Our approach is to move people from stabilisation of their challenging presentation, through rehabilitation and community re-

integration towards a better quality of life. An advantage of the large campus at St Andrew’s is the comprehensive nature of our pathway.

From a Medium Secure Unit through to offsite apartments and various units in between, our patients aspire to progressing towards a more independent lifestyle by moving through the pathway. We have our units all at the same Northampton site. This makes it easy to move forwards or backwards on the pathway, according to progress and needs.

An absolute essential for anyone on the neurorehabilitation journey is renewal of a sense of direction or purpose in life. In the initial weeks and months after brain injury, this can be hard to find. The effects of brain injury on behaviour and function result in loss of independence, skills, hobbies and working life. This undermines the motivation and focus needed to recover or improve functionally or behaviourally. We are fortunate at St Andrew’s to have a sheltered vocational workspace that nurtures skills and can breathe new life into employment or meaningful occupation and rebuild morale. Our education service, regular social events with other brain injury groups and a relatives' support group also influence a brighter outlook for our patients.

Working with aggression is just the start of our shared journey.

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interview

escaping the abyss

Locked-in syndrome threw Kate Allatt into her own horror movie with nobody to hear her scream. She escaped with a plan to save others from the same hellish world, and is doing a great job so far.

A wine-soaked conversation with her husband may well have saved Kate Allatt’s life.

Shortly before the neurological catastrophe that almost left her three young children without a mother, they’d been pondering the ‘what ifs’ of marriage.

“Even if I couldn’t wipe my own backside I’d want to be kept alive,” Kate told her

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husband over drinks at her sister-in-law’s house in Bolton. Two weeks later, with Kate locked in her own body, unable to move or communicate in any way, he remembered their discussion. And, despite being told by one healthcare professional that she’d be better off dead, he and Kate’s family and friends committed to making sure she had enough time to escape her newfound prison.

Today Kate is a marathon-running, tubthumping reminder that locked-in syndrome (LIS) can have a happy ending.

She travels the world reassuring and motivating early-stage LIS patients and, with a published memoir under her belt, also campaigns for changes to the way the condition is managed by healthcare authorities. With the caveat that she is eternally grateful to the staff and specialists who kept her alive, she believes her own case, and many others around the world, highlight the need for improvements to the way LIS is handled. At the lowest point of her own experience, she recalls: “I was able to hear everything around me very easily but I just couldn’t communicate. I had

interview

hallucinations, I heard and saw things I didn’t want to see and was terrified. What if they thought I wasn’t worth keeping and decided to pull the plug?”

It was a severe brain stem stroke that put Kate in this position at 39. She’d visited hospital, concerned about her week-long headache, and other unusual symptoms for a super-fit, 70-mile-a-week fell runner. But despite slurring her words as she spoke to the doctor, she was sent home with apparent migraine and a prescription for co-codamol.

The stroke, five hours later, was like “an explosion of the brain”. A medically induced coma followed, before two weeks with LIS and zero movement and then gradual progress from blinking for ‘yes’ and ‘no’ to walking out of hospital five months after the stroke.

Among the horrors of early-stage LIS, which Kate wishes to impress on loved ones and carers of patients with the condition, is overhearing conversations that destroy hope.

“In one well known case, a family were discussing which of the man’s organs they were going to donate. He was there listening and went on to make a full recovery.

“Nothing as bad as that happened to me but there were conversations around my bedside completely about me and my outcome.”

In another case, a male LIS patient’s room had become an unofficial staff room for ward staff. Their trivial chatter over several months eventually inspired him to find movement he needed to tell them to shut up.

“It’s a terrible symptom of society that you’re invisible in a wheel chair or hospital bed.

“Those first couple of weeks felt like a lifetime for me. People were talking around my bedside but not giving me any eye contact. That carried on even when I was able communicate. Staff would do their tasks without looking me in the eye.”

Kate believes, given the misdiagnosis rates of prolonged disorders of consciousness (PDOC), all LIS patients should be communicated with directly, with an assumption that they understand. A 2015 study by the University of Western Ontario suggests a fifth of patients diagnosed as being in a permanent vegetative state showed responsive brain activity via a brain

I was terrified. What if they thought I wasn't worth keeping and decided to pull the plug?

scan. Some studies put this proportion at 43 per cent. While PDOC diagnosis is moving towards MRI technology, currently it is dominated by behavioural analysis. This presents obvious challenges in LIS cases.

Kate's aversion to the word ‘plateau’ signposts another failing she sees in current LIS and post-stroke treatment.

“The word should be banned as it’s so damaging in rehab. There is never a stroke survivor that doesn’t improve. Whether it’s fast, slow or almost indifferent, they can always make some positive improvement.”

‘Plateau’ is indicative of a general desire among ward professionals to lower expectations rather than creating false hope, says Kate.

“It’s a justification to stop allocating costs and resources to someone, not a reflection of how much more of an improvement they can make. The patients and their families don’t get that. They just hear the word and think that’s the best things are going to get and that can destroy lives.

“Negative language is often used because doctors don’t want to inflate hope. But in using it, they crush all hope. When you have families that may be dysfunctional or distant being told that this is the best the situation is going to get from a white coat who supposedly knows what they are talking about, they won’t need much persuasion to pull the plug.

“Of course, there’s me at one end of the spectrum and, at the other, someone like Tony Nicklinson [a LIS patient who unsuccessfully fought at the High Court to end his life, before passing away in 2012].

Two different people with injury in the same part of the brain can have very different outcomes and it can be horrific.

But nobody knows where an early-stage

LIS patient might end up on that scale in six months to a year.

"So often, the message in intensive care and early rehab is that, if you haven’t made significant improvement by six or 10 weeks, then you’re going to have a lousy prognosis. If the patient hasn’t changed after a few weeks they might end up in a nursing home.”

This overbearing pressure to improve came to a head for Kate in a demoralising but strangely inspiring meeting in hospital.

“I had been in intensive care for nine weeks and all I had was a bit of head movement. I had a review with all my family, including my mum, as well as the nurses, the occupational and speech and language therapists and a neuropsychologist. I was in a wheelchair in the corner dribbling.

“The rehab consultant opened the meeting and said ‘thanks for coming, I’ve nothing to add’. Then the next person and the person after that both said ‘no change’. Another said we needed to discuss my discharge to a nursing home.

"I was devastated and spelled out to my friend ‘stand by me’. That was when I decided to prove them all wrong. I channelled my anger positively – I wanted to be with my kids, not visited by them once a week in a nursing home."

She began an obsessive focus on achieving the slightest movement, with toughness from her running days coming into play.

“Every waking minute of every day I was trying to push my finger by a few millimetres.

Then I’d be pushing the next one. Next I’d be staring at my toes, saying to myself ‘move damn you’.”

The rest is well documented in Kate’s book Running Free and – unsurprisingly for a digital marketer by trade – on YouTube and various other social media platforms.

Having spent six years meeting LIS patients and affected families, Kate believes there is a disproportionate lack of research on the condition.

This and obvious budgetary challenges, are the root causes of low expectations and the limited amount of time patients are afforded in which to show signs of improvement.

“Cost pressures have a hand in the

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interview

Kate Allatt with her published book

premature nature of decisions about care and whether or not rehab is offered. What I really find disturbing, however, are the numbers of families who are told that the statistics aren’t good for their loved one.

"That might be true in a sense – but there aren’t many statistics. So when you drill down and ask the doctor how many cases they have personally come across, it may be one a year; or, as I discovered recently in Cumbria, the last one might have been a decade ago. What makes them an expert?”

Further research into LIS is clearly hampered by a scarcity of funding, especially when bids are up against studies into more common diseases and conditions.

A more immediate measure, says Kate, would be to look beyond age and medical history during a patient’s battle with LIS. “A patient’s lifestyle, family and commitments should also be factored into the prognosis.

As well as stats, we need to build a more detailed picture of the patient before decisions are made.

"Their past and background could determine how we motivate the individual and overcome barriers.

"For example, I had three young children -

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possibly the biggest motivator you could have.

I was extremely fit and had an obsessive personality. But none of that was factored into my prognosis.”

For those patients that make it to rehab and escape the life support machine, as Kate did, further problems invariably await.

“In rehab I think there needs to be more education of family and close friends at the time of discharge about how the brain injury might have affected the patient. Dealing with the emotional side of my stroke has been my biggest challenge.

"I’ve had to battle to educate my family about fatigue, or why I’m irritable, can’t process things or can’t sleep. Doing this while also trying to get better is a real struggle. When you’re discharged there’s an assumption that you’re fine and there’s so much more that doesn’t get said because we tend to treat the brain injury itself rather than the person holistically.”

Although she recognises that many clinicians may deem it a wishy-washy concept, Kate says belief is also in short supply at the LIS patient’s bedside.

“I use video evidence to get past the scepticism about the belief factor,” she says.

“When I visit LIS patients I hold their hand and say ‘I’m not a doctor or a therapist, I’m just someone who had what you have’. I tell them they are in for the fight of their life but that they’ve got the most amazing team around them.

"I say ‘I’m at the end of the spectrum and here’s the other end. We don’t know where you’re going to end up but if you do things repetitively, intensively and work damn hard, and you get the opportunity for rehab, you will increase your chances of improvement’.”

Kate cites numerous examples like that of 24-year-old LIS patient Klaudia, in Poland, who developed the new ability to rotate her hand 10 hours after one of Kate’s bedside pep talks.

“Healthcare authorities have become more receptive to [my visits] and they know I’m not there to raise expectations, but to offer help and support; and I have seen phenomenal changes,” she says.

See Kate’s video evidence of her LIS work on kateallatt.com.

Giving a voice to locked in patients

Brain computer interfaces (BCIs) could hold the key to setting locked-in syndrome patients free. Or at least, they could allay the torture of being able to think, see and hear – but unable to tell anyone their mind is still active.

A study earlier this year at the Wyss Center in Switzerland used a BCI system to read the thoughts of four patients and empower them to answer yesor-no questions.

All the patients in the study were "completely locked in" and could not even move their eyes.

The research tapped into the way in which brain cells affect blood oxygen levels, which then alters blood colour. Scientists used near-infrared spectroscopy to detect blood colour in the brain, while computer technology was ‘trained’ to interpret brain signals associated with yes-orno answers. The system was 75 per cent accurate – meaning questions had to be asked repeatedly to gain certainty of a patient’s answer. Prof Ujwal Chaudhary told the media: "It makes a great difference to their quality of life.

"Imagine if you had no means of communicating and then you could say yes or no - it makes a huge impact."

Passionate rehabilitation staff needed Circle Rehabilitation is recruiting for nurses, matrons and rehab assistants.

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See www.circlehealth.co.uk/circle-rehabilitation for more details

The rapid development of transcranial magnetic stimulation has thrust neuro-rehab into a brave new world of possibility, as Andrew Mernin discovers.

The US military is honing a crack team of super humans by turbo boosting their brains with neuro-stimulation technology.

Somewhere in covert quarters, behind ‘restricted access’ signs, a cognitive enhancement programme is said to be underway. Volunteers, including Navy Seals, are reportedly being tested in various ways to extend peak performance of key tasks from minutes to 20 hours. Like the rise of drugs which supposedly propel creativity and thinking speed, cognitive enhancement technology has fired sci-fi imaginings into the real world.

At the heart of the revolution is Transcranial Magnetic Stimulation (TMS). The field is not new but its development has accelerated at break neck pace in recent years.

As a result, it promises a new dawn of treatments for stroke and brain and spinal injury patients.

“I honestly feel the potential of TMS is absolutely limitless,” says Faraz Jeddi, a neuro-rehab consultant at the Royal Berkshire Hospital.

“Although it’s been around for years, amazing possibilities have just started arising.”

Jeddi is more than a keen observer of this new age of TMS. Having acquired TMS equipment, he is looking to build teams to further investigate links between the technology and functional recovery after stroke and severe injuries.

Currently TMS is grounded in depression and chronic pain treatment, while also used in diagnostics. The exciting potential that enthuses Jeddi is in the recovery of specific motor functions, to the “ultimate goal” of restoring the ability to walk after paralysis.

“Scientists around the world are asking where the limit is. Trials of TMS to restore functions of

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pping p i t s o m in t t

technology

technology

For stroke and brain injury, the implications of TMS could be massive.

Amazing possibilities have just started arising

limbs are already happening. The implications for stroke and brain injury could be massive.”

TMS is a non-invasive procedure, using magnets held against the scalp to induce electric fields inside the brain, effectively switching on neurones. It is usually delivered by a contraption akin to a dentist’s chair, although work to develop smaller, less cumbersome devices is progressing.

Its value as a treatment for depression is well evidenced, and is becoming increasingly established within healthcare.

In June this year, doctors at the Semel Institute for Neuroscience and Human Behavior at UCLA, spoke out about the underselling of TMS as an alternative for depression in cases where medication hadn't worked.

The number of people with reported depression has increased by 18 per cent since 2005, the World Health Organisation says.

Meanwhile, US authorities believe antidepressants work in only 60 to 70 per cent of people who take them. TMS could therefore help fill a gap.

“There are new TMS devices recently approved by the FDA that will allow patients to achieve the benefits of the treatment in a much shorter period of time,” said UCLA's Andrew Leuchter after the installation of new TMS technology at the world-renowned hospital. “For some patients, we will have the ability to decrease the length of a treatment session from 37.5 minutes down to three minutes, and to complete a whole course of TMS in two weeks.”

In the UK, a handful of private providers offer TMS for depression, while some NHS trusts are considering introducing it; with Northampton reported to be its only adopter so far.

Jeddi says: “I don’t know why TMS is not being used to treat depression in the NHS more widely.

In the private sector, they are using it for a whole range of conditions, including tinnitus and general pain management.”

According to Dr Alex O'Neill-Kerr from the Royal College of Psychiatrists, around 30 per cent of depressed patients who have TMS treatment face no symptoms of depression afterwards, while others say depressive symptoms are significantly reduced.

Several research studies also show that

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Neuro-rehab consultant Faraz Jeddi repetitive TMS can control neuropathic pain and fibromyalgia (a condition characterised by pain throughout the body).

One study by neuroscientists at the US university of Stanford found that pain was reduced by as much as 50 per cent after a daily dose of TMS for four weeks.

Further studies report 30 to 40 per cent reductions. As yet, however, official guidelines supporting TMS are limited.

NICE says TMS for depression shows no major safety concerns, while the evidence on its efficacy in the short term is adequate, although the clinical response is variable.

“Repetitive TMS for depression may be used with normal arrangements for clinical governance and audit,” it states.

The Food and Drug Administration (FDA) has issued similar guidelines in the US, where TMS usage is significantly more widespread than in the UK. Healthcare body Cochrane – which scrutinises the case for treatments and therapies – reflects these conclusions in various papers.

Its reports suggest there is insufficient evidence for TMS as a treatment for motor neurone disease (2013) and epileptic seizure reduction (2016). Its 2002 review into TMS and depression said there was no strong evidence but also that small sample sizes

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did not exclude the possibility of benefit.

Given developments in the years since, a new review is likely to be published soon.

Jeddi says: “I don’t see anything holding back TMS in the UK except a lack of research.

Unlike anywhere else, practice follows evidence from absolutely robust research.

It’s going to take time for that to mature but once it does I’m convinced the UK will lead the way with this technology. More and more people are getting involved and I even know of a few psychiatrists who have left their profession to focus solely on TMS. It is gathering pace and there are people here who are extremely motivated to prove what it can do.”

In terms of stroke treatment, TMS offers lots of potential but more research is also needed here.

One theory, currently being investigated by the University of Cincinnati, involves using TMS to reduce activity on a stroke patient’s non-injured side of the brain to give the injured side a better chance of recovery.

TMS also seems to be a promising intervention to reduce spasticity in patients with MS, stroke, cerebral palsy and spinal cord injury. As noted in a 2014 report (Gunduz, Kumru and Pascual-Leone), clinical applicability needs to be confirmed in well-designed trials with bigger sample size and longer-term follow-up.

Even with more evidence from such research, the price of implementing TMS might also be a stumbling block to widespread usage in the NHS. TMS systems currently cost £120,000 to £150,000, with further investment required in training or taking on specialist personnel to operate it.

In these stringent times, few NHS trusts are likely to have even this relatively modest amount spare on the budget sheet.

Yet the potential value in reducing the

amount of care provision, drugs and equipment needed by patients could vastly outweigh upfront overheads, Jeddi believes.

“If you enable a person to go back to working life or to walk again and do things independently, there is no match to the value of that. We may see TMS increasingly replacing drug use, in depression for example, but I expect that TMS could be used complementarily with medication.”

The ancestry of TMS can be traced back to the 1700s when experiments by Volta and Galvani revealed that nerves were electrical conductors rather than water pipes, as previously thought.

Michael Faraday kicked things on in 1831 when he enlightened the world on the possibilities of electromagnetic induction.

Then came the technology’s modern architect, Yorkshire physicist Anthony Barker, whose lengthy research led to the 1985 demonstration of a twitching hand through TMS. The therapy was applied to the motor cortex in the opposite hemisphere that controls movement of particular hand muscles.

This proved that precise parts of the brain could be targeted without painful electrical stimulation. It was all the more impressive given that it had been carried out in awake, human volunteers.

After that, TMS gradually became widely used as a brain mapping tool by neurosurgeons. Its rise as a therapeutic tool began around a decade ago.

As the technology continues to develop, lingering questions remain unanswered.

One area of concern is the safety of TMS for certain patients. “There are limitations to patient selection,” says Jeddi. “If you suffer from uncontrollable epileptic seizures, or have a pacemaker, TMS machines may not be suitable. But the

TMS is gathering pace and there are people here who are extremely motivated to prove what it can do

technology

TMS in action at a clinic in the US

stimulus of TMS is very mild compared to an MRI magnet and the incidence of seizures is very low. Safety will increase as the technology improves.

"We are already using seventh generation machines and improvements have continually been made. It has evolved at a phenomenal rate in the last five years and could well be standard practice very soon.”

Questions must also be answered about the threat of any long-term effects, and the longevity of positive results. TMS also has an identity problem, in that in some sceptical

minds, it incites images of electric shock treatment, perhaps in some 1960s asylum.

This will dissipate as research grows, says Jeddi. “We are trained to always go for the evidence and that is in the making, so it’s only a matter of time before these views change.”

As well as doctors like Jeddi, who are passionate champions of TMS, equipment makers will also have a big hand to play in spreading its usage.

The neuromodulation devices market – of which TMS systems are a major part – is

on track to almost double in value from 2015 to 2020 to £4.8bn. Rising geriatric populations around the world and increased prevalence of neurological diseases are cited as key growth drivers.

A lack of trained staff is listed as a hindering factor.

If TMS can live up to expectations, reducing drug dependence, transforming lives and slashing required care resources, there will be no shortage of neuro-rehab professionals keen to get trained up on the technology, however.

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Sharon White, artist and art therapist

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Art therapy offers patients freedom and focus. Its also brightens the vast grey void that often swamps the mind of the severely injured. NR Times meets Sharon White to find out more.

a brighter painting future

The limitations cast upon people by severe injuries are no barriers to art.

So says Sharon White, an artist and art therapist who works with brain and spinal injury clients, amongst others.

The example of Laura – whose named has been changed for anonymity – paints a clear example of this.

A spinal injury left her completely paralysed from the neck down, but able to think and speak coherently.

“You have to work with what movement you do have and take it from there,” says Sharon. “She could move her head left and right and up and down, so she had been painting very childlike pictures, using her mouth, relearning what she used to do with her hand.

“We decided to look at the Impressionist movement, including Monet, and then into Pointillism, which was developed by Georges Seurat and Paul Signac [in 1886].”

Pointillism is a painting technique in which small dots of colour are applied in patterns to form an image. It was an ideal fit with the movement available to Laura.

“The dots were so much easier than shading and we were able to use her disability as a positive. She’s since been accepted as a student by the Mouth and Foot Painting Artists Association.”

Art therapy emerged in the 1950s as brutal asylums gave way to mental health hospitals keen to try experimental therapies. Today the profession is state-regulated by the Health and Care Professions Council. NICE guidelines validate the therapy, particularly in relation to schizophrenia, although Sharon admits more evidence is needed to unequivocally prove its worth in healthcare.

Unlike many therapies – which go on behind a wall of privacy, protected by confidentiality rules – Sharon’s sessions take patients out into the open. This approach has its

origins in her 17 years as an art teacher in a former life.

“I work confidentially, but the teacher in me wants to celebrate the work of my patients.

Some art therapists tend to do sessions and then put the work from that session into a folder which is put in a drawer in the office.

I put that work where people will see it by creating galleries and exhibitions, which give patients a goal to work towards. It doesn’t matter if its exhibition-worthy at the end, it’s the process of getting there that's important.”

Sharon balances her week between time in her Dorset art studio and therapy sessions, often with people affected by traumatic brain injuries, with some teaching thrown in too.

I work confidentially but the teacher in me wants to celebrate the work of patients. It doesn't matter if it's exhibition-worthy or not, it's the process that counts NRtimes

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In therapy, engaging patients in the first session requires finding “the hook”, she says.

“Just because someone has a brain or spinal injury, it doesn’t mean they have lost their social awareness or attitude towards art. So, I can’t just turn up with my paintbrush and expect to make their world better.

“The first thing I need to do is get them involved in an activity they believe in. If they’ve not been artistic before, you have to understand their background.

“A 19-year-old lad who’s just had a motorbike accident is probably not going to want to go straight into Impressionism. I would look at their interests, anything from graffiti to a particular country they’ve been to, and then develop a project to work on. Even if it’s just a thank you card for a member of staff, the activity has to be purposeful.

“Once they start seeing progress, they get the feel-good factor and their art skills almost develop by default.”

Achieving this feel-good factor is all the more challenging when depression lingers in the backdrop of Sharon’s sessions.

The prevalence of depression after brain injury is said to be as high as 50 per cent according to some studies. Meanwhile, up to 30 per

I can't just turn up with my paintbrush and expect to make their world better.

You need to get them involved in an activity that they believe in cent of people with long-term disabilities are thought to be living with depression.

Art offers a focal point, or anchor, in the storm of bad feelings that can follow severe injuries. Anger (at one’s self or others), mourning the way life was before and frustration at new limitations are common – even if the patient doesn’t cross the line into a clinical depression diagnosis.

Art’s status as a means of alleviating anxieties has also spilled over into the commercial world with the recent boom in colouring-in books for adults. At one point in 2015, they made up five of the UK's top 10 Amazon best-sellers' chart, and their sales growth continues. The ‘mindfulness’ movement, in which we’re encouraged to focus on thoughts, feelings and the world around us in the present moment, also has more people involved in artistic pursuits.

Yet art has a complicated relationship with depression.

As neuroscientist Nancy Andreasen wrote in her book, The Creative Brain: The Science of Genius, artistic souls may also be prone to depression.

She theorises that creative minds are less likely to easily adapt

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to new situations. This is because they are more sceptical of the information given to them by authority figures. The result is a complex inner world filled with shades of grey rather than black and white. This mindset, she writes, can lead to feelings of isolation and alienation, which cause stress and depression – which paradoxically provokes more creativity.

Grey, and the intangible, uncertain connotations Andreasen pins on it, is a colour which runs throughout Sharon’s work.

“I’ve been working in the grey all my life. Art is subjective and ambiguous and difficult to quantify. But you can’t put a price on the value of allowing somebody to completely and freely express themselves.”

Her use of art to tackle depression, brought on by injury, and perhaps intensified by the nuances of the creative mind, involves focusing on the future.

“When someone is severely injured, there is often too much focus on the past and the present; the life they have lost and the challenges of now.

“But why can’t we look to the future? If they always wanted to go to South Africa, for example, let’s do a project on that, even if they might never get to go there. It’s about bringing back positivity and awareness of the wider world into their life.”

Sharon makes a convincing case for art as a great healer, thanks to her direct experience of it. She discovered art therapy accidentally, when she took to painting after suffering from chronic fatigue syndrome as a result of pleurisy, amid the strains of life as a teacher.

“I lived and breathed my job and resented having only 24 hours in my day - sleep wasn't on my agenda. My body just gave up in the end, but surprisingly my creativity saved me; both emotionally and physically. I started to paint with energy and excitement; it was like putting fuel in a car. Having experienced the power of art first hand, I wanted to share my experiences with others.”

For all of Sharon’s good work as a therapist, however, is there an argument that volunteer-led art sessions would be just as effective – and cheaper – for neuro-rehab providers?

“You will always get volunteers who will come in and do crafty things, which can be fantastic for mindfulness and escapism.

A professional, on the other hand, will have a vested interest in the individual, and their progress, from the beginning to the end of the programme and will be very project-based.

You don’t get this if you just say, ‘today we’re going to paint some jam jars’ and then move onto the next thing the following week.

“You also find art therapists collaborating with all the other therapies, like music and physio, working together to help the patient.”

With tenacious people like Sharon driving the art therapy movement, expect to see the growing field in action at a clinic or unit near you soon.

Achieving Through Creative Expression

Specialists in: > Acquired Brain Injury > Neurodisability REFER NOW for active rehabilitation, slow-stream and maintenance therapy across all 4 domains: > > > >

Psychological and emotional functioning Cognition and behaviours Communication Physical functioning

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07908 774247 www.attunetherapies.org info@attunetherapies.org Attune Music Therapy@AttuneTherapies

Music Therapy is an HCPC-registered profession

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condition

lost in a world of confusion Assuming a foreign accent overnight is a frightening phenomenon that is surprisingly common after stroke and brain injury. Andrew Mernin explores the strange terrain of foreign accent syndrome

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condition

The curious case of Sarah Colwill gained global media coverage in 2009. The 41-year-old awoke one morning to find her Devon drawl replaced by a Chinese accent, after years of severe migraines.

To tabloid editors, such tales of foreign accent syndrome (FAS) provide silly season page fodder, written with a smirk.

For news broadcasters they’re an ‘and finally’ item.

Cases are reported like dispatches from the Twilight Zone.

"Annie went to sleep speaking like the Queen, and woke up sounding like Rab C. Nesbitt," wrote the Scotsman in 1997 for example.

As FAS expert Nick Miller can testify, however, the condition is neither as rare or as trivial as the media would have it.

The professor of motor speech disorders at Newcastle University, who has been published extensively on FAS, says: “In a transitory phase after stroke or brain injury it’s actually not uncommon. If you work in neurology, healthcare of the elderly or on a stroke ward, there’s a likelihood that you will come across it.

“However, it is the cases in which people are left with a different accent permanently that are rare.”

In terms of its psychological impact, “most people find it devastating.

The way you speak is a really important part of your personality.

Whatever you put out to other people, whether you’re angry, tired, happy or sad, where you’re from, what your political views are, are all conveyed in your speech. Suddenly that’s all robbed from you and you can’t express how you feel properly.”

FAS describes the phenomena in which a neurological incident such as stroke, brain injury or

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There's a tendancy to think ‘you’re having us on, when are you going to come to your senses and talk properly again?’ But often they can’t.

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degenerative condition, causes an apparent change in accent. Around a third of strokes will result in speech problems – a proportion of these will just happen to culminate in giving the auditory illusion of an accent.

“It’s partly in the mouth of the speaker and the power of movement they have over their lips, tongue and vocal chords,” says Miller. “But it's also in the ear of the listener who associates the changes with foreignness rather than just disordered speech. It’s a bit like when you look at a cloud and you see a giant fluffy rabbit instead of water vapour.”

There are also purely psychological cases of FAS. In the same way a tick, limp or apparent deafness or blindness might occur in someone with nothing physically wrong with them, individuals may suddenly adopt a new accent. It is generally accepted that between 10 and 30 per cent of any cases arriving in neurology departments are ultimately found to be functional, rather than caused by stroke, injury or disease. A foreign accent is just one of a myriad of issues that can present in this situation - alongside paralysed arms and legs, blackouts, memory loss and many more symptoms. One such case was documented in the book Foreign Accent Syndromes, the stories people have to tell, by Miller and Jack Ryalls.

Mrs Y was strongly religious but had committed a grievous sin. Discussions revealed how she had adopted a new accent as part of a whole new persona that distanced herself from her sinful past.

Miller says: “They might have a social anxiety problem and developing a foreign accent might be a protective strategy to distance themselves from a social situation. Their accent may deflect criticism from their true self.”

In FAS with a neurological origin, ‘t’ sounds might be pronounced with a ‘d’. In normal speakers, vocal chords will begin to vibrate around 100 milliseconds earlier for ‘d’ than a ‘t’ – which involves a miniscule release of air into the mouth before being released. “A neurological problem alters the timing of the actions taking

place. It affects the underlying coordination of movement,” says Miller.

“Also, lip weakness or difficulty coordinating the two lips together can result in a ‘w’ sound becoming ‘v’. So ‘a glass of vater’ may sound like a German or Russian speaker. Sometimes patients can’t say ‘r’ words so ‘writing’ may start with a ‘g’ and become very eastern European.”

Stress and intonation also characterise an accent.

“Welsh and Swedish people tend to have a singsong style to their speech. If you have a head injury, for example, you might not be able to control when your speech goes up and down and your new intonation pattern might also make you sound Welsh or Swedish.”

In whatever form the condition takes, its fallout can be severe.

A 2011 study lead by Miller and fellow speech and language experts into ‘insider perspectives’ of FAS concluded that: “Without exception, participants confirmed that FAS exercised a life-changing influence on themselves, but potentially on their family, friends and associates too.”

It also found that feeling like a “stranger within a community with a different accent” was a common experience. Miller says: “FAS causes a lot of stress and strain on families. With a stroke or a head injury a person may have a distorted face, weak arm or problems walking. But nobody would associate them with talking in a foreign accent. There is a tendency for family members to think ‘you’re having us on, when are you going to come to your senses and talk properly again?’

They often can’t.”

Miller and his collaborators questioned 13 people with neurogenic FAS on their experiences of the condition. Many of their answers were loaded with frustration and despair. One respondent lamented: “I went through this door and when I came through it the next morning it was not me…

Where did I go? I was somebody else.”

Another said: “I find it embarrassing, shameful and insulting to my intelligence, lose my selfrespect and hate being this way…It causes me great distress because this isn’t the way I used

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It has opened me up as a different person and given me a different experience of life

to be and hurts me immensely – more than I can ever express.”

The study also uncovered many of day-to-day irritations of life with FAS. It caused onceloving pets to shun their strange-speaking owners. Sufferers avoided shopping for fear of embarrassment. Another cancelled an evening out for a pizza in case her new Italian accent offended the waiters. One interviewee said her friends began calling her ‘poshy’ before gradually drifting out of her life. Another said they’d lost their Britishness. A respondent with a newly acquired eastern European accent said they almost ‘felt at home’ on a trip to Croatia, such was the feeling of isolation in their native UK. Not every FAS experience is a negative one, however, as one person questioned put it: “Because I express myself differently, I think it has opened me up as a different person and given me

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a different experience of life.”

Miller says: “Sometimes, even when the power and range of movement has returned to the vocal chords, lips and tongue, the individual will still speak with the foreign accent. Usually this is because there has been some gain from the new accent, perhaps people attended to them more, or were more interested in what they were saying.

It could also be because they lack the confidence to try to return to their original accent; just as someone whose power returns to their leg after a stroke may still revert to a limp as they are unsure about using it fully.”

FAS cases will often receive cognitive behavioural therapy or counselling.

The functional version of the condition can be a manifestation of a range of mental health issues, including depression, anxiety, schizophrenia and conversion disorder, and will be managed accordingly. Neurogenic cases usually undergo speech therapy.

“The speech therapist will identify the changes in speech that have made the person sound foreign. Is the intonation and stress on the wrong part of the word? Is the voice rising when it should be falling? Are there other differences in particular sounds? They then target those in therapy, improving the range, power and speed of movement to the lips and tongue. It can be a lengthy process of several months.”

Overcoming FAS can be incredibly challenging for the individual – given that they are usually also coming to terms with a life-changing event such as stroke or head injury. They may already be battling with a new sense of identity, even without the accent change. Understanding of FAS and the development of faster treatments is clouded, by its origins in both the neurological and psychological realms. It is further complicated by the hugely complex relationships humans have with accent. Accents are deeply embedded in our psyche and we have the ability to alter them on a daily basis, depending on the social situation we’re in. All of which highlight the need for more research into FAS in the future.

For now, see www.nrtimes.co.uk for details of Miller's in-depth findings so far.

www.in-pa.org.uk

Setting standards for neurorehabilitation

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.

Developing focused training programmes

Organising collaborative research

What we do:

Representing providers of:

• Raise the profile of independent

• Neurobehavioural rehabilitation

providers within UK neurorehabilitation.

• Neurorehabilitation • Spinal rehabilitation

• Provide a collective voice for members

• Community services • Respite • Day care

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.

• Treatment for those detained under the Mental Health Act 2007 • Specialist nursing including nursing for ventilated patients

clinical practice

talking the talk Working with communication problems after stroke and brain injury requires patience and professionalism. For non-speech specialists, our novice guide from expert Pamela Enderby, of Sheffield University, might also help you and your patients defeat such challenges.

When words fail Following a brain injury, some individuals will have difficulty understanding what is said to them. This has been described by patients as feeling as if they have woken up in a foreign country. They may be able to get the gist of what is said but suddenly interpreting precise messages is beyond them. Others will have difficulty remembering the names of things or people, even those of loved ones and close friends.

Frequently, individuals will experience both challenges.

Frustration builds This difficulty in understanding or finding words – known as ‘aphasia’ – is often mirrored in reading and writing. Whether communicating verbally, or via text message, email or letter, brain injuries can cause major challenges. Everybody has difficulty on occasions remembering the name of an individual or expressing a view and we all find that frustrating. Imagine the overwhelming frustration of not being able to understand or express oneself reasonably ALL of the time and thus it is easy to understand why so many people with this difficulty get frustrated and give up trying.

Other problems mount Damage to the brain can cause other difficulties with communication alongside aphasia or separately. For example there may be a problem with controlling the muscles of speech resulting in voice and articulation being different to what it was previously. It may be that it is hard for the person to make themselves understood because of imprecise articulation and slurring. They may become unintelligible or their voice may be too quiet or loud. Unsurprisingly, this can, again, cause embarrassment and frustration. This speech difficulty is often termed dysarthria. It requires great effort on the part of the person to produce speech as clearly as they would like and they may reduce their attempts to converse because of this effort.

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Personality perceptions change These difficulties in speaking can lead to family members feeling that the individual has had a change in personality - when this may not be the case. If previously they had been quick at repartee, humorous responses or coming forward with their opinion, they may now have difficulty summoning up the energy, words or the control to do this. Furthermore, frustration can result in outbursts of temper, particularly initially.

Sticking points It is not uncommon following brain injury for an individual to get stuck on saying the same word or phrase when attempting to speak and this phrase will get in the way of what they are trying to say. This is called perseveration. It is not only irritating to the listener but also to the individual.

They may repeat a swear word, nonsense word or meaningless phrase. It is just hard to stop it popping out! It can be particularly difficult if the person perseverates on important words such as ‘yes’ because this could be interpreted as assent when the opposite may have been intended on occasions.

clinical practice

Communication problems at a glance: Speech •Loss of neuromuscular control of the structures involved in articulation results in speech slurring, or dysarthric speech.

•Tone and quality are affected by damage to the tongue, lips, vocal cords and palate.

•Articulation can be affected by stroke or brain injury.

•Complete loss of speech due to impairment of neuromuscular control is known as anarthria.

Language •Dysphasia – communication disorder as a result of brain damage – can be broken down into problems with expression, comprehension, reading and writing.

•It is caused by a lesion affecting the dominant hemisphere in the parietal and temporal areas.

•Receptive involvement suggests a more extensive lesion.

•Global dysphasia suggests all aspects of language may be impaired, with the patient limited to unintelligible grunting sounds.

Fluency •Chronic neurological diseases such as MS or spinal cord injury can lead to intercostal and diaphragmatic muscle weakness. These can impair breath control and therefore fluency.

Voice •Dysphonia refers to speech problems as a result of physical disorders of the mouth, tongue, throat or vocal chords.

•Polyps (small growths), nodules and oedema (fluid build-up in tissue) in vocal cords can cause abnormal stresses and tension which result problems commonly experienced by singers.

Where to seek help?

Speech and language therapists are familiar with the broad range of speech, language and communication difficulties associated with brain damage. They will be able to assess and diagnose the features of an individual's difficulties and develop strategies to assist them to communicate more effectively and to improve these features. Sometimes, the use of technology, such as assistive communication devices, will help the individual get their message across and regain some control over their lives through communicating more effectively.

No two cases are the same Every person who has a speech and language difficulty following trauma to the brain will be different.

The nature and severity of the damage will result in different types and severities of difficulty along with retrained abilities.

These will be modified by their previous personality and personal characteristics. Additionally, it is important to remember that communication always takes two and thus the communication partners will need to learn different ways of supporting and encouraging conversation.

Cheat sheet

How to help people with communication problems after brain injury and stroke:

• Reduce distractions when having a conversation to help the individual concentrate and focus.

• Keep your voice at normal volume if the individual does not have a hearing problem.

• Talk slightly slower if you find that this helps the individual understand more easily. But do not talk too slowly as this can be humiliating. Find the best speed for that person.

• Use gesture and facial expression if you find this helps. For example, you may wish to point to the things you are talking about.

• Encourage all efforts at speaking and/or communicating and focus on what is successful.

• Check that you have understood what the individual is saying by rephrasing and asking whether you got it right.

• If you can't understand the person don't pretend to do so.

Apologise for not understanding them and, if the situation does not improve with your guesses, then leave it and say you will come back to it later - but don’t forget to do so!

• If the person can use gesture, writing, drawing or anything else which will help them get their message across, encourage them to do so.

• Individuals with communication difficulties may sit back in a group.

Encourage participation particularly in anything that will affect them directly.

• Don’t ignore any efforts to speak.

• With time you will modify your way of communicating with the individual who has a speech/ language problem and they will learn ways of getting their message across. Remember, this process takes time!

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legal

making an expert choice The value of neuro-rehab expertise is all too often overlooked by lawyers, to the detriment of their clients, warns Mike Barnes.

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Neuro-rehab has an image problem. It’s evident in the highest quarters of the NHS, at Westminster and on hospital wards.

The fact is, as a healthcare field, there is a widespread lack of awareness about exactly who we are and what we do.

This identity crisis manifests itself in many ways. Our field is often lumped in with distant cousins of healthcare when auditors come to town.

In the data vaults of many clinical commissioning groups, neuro-rehab is not even categorised. Meanwhile, we are shamefully underrepresented at the top table of the NHS, despite the prevalence of brain injuries, stroke and other neurological disorders.

Blatant examples of our misunderstood status are also regular occurrences in the legal world. Even among legal professionals who have been embroiled in serious injury cases for many years, the value of our expertise is often overlooked.

In brain injury cases, when expert witness testimony is required, it surprisingly common for lawyers to initially call on general neurologists.

The court needs a detailed projection of the individual’s likely challenges for the rest of their life and how they can be managed.

A long-term picture is required of probable cognitive, emotional and behavioural problems. Specifics on daily tasks, like eating, walking and washing, also contribute vitally to the claimant’s case.

Given that few neurologists work directly with brain injured patients beyond the bedside, their expertise is less relevant to these longerterm cases. Even if they have seen people with brain injuries in hospital, they are usually concerned with the patient’s acute situation, not the long-term outlook.

Even more mismatched to quantum in brain injury court cases are neurosurgeons – which judges and lawyers have been known to call upon regularly. Their involvement in brain injuries is restricted to the 48 hours or so immediately following the trauma.

Managing that pressurised situation is their primary focus, rather than the long-term permutations of the injury.

When a head injury has been sustained among broken bones and other injuries, orthopaedic surgeons are sometimes enlisted as experts.

Such requests from lawyers are not uncommon, but thankfully a few words of advice from neuro-rehab experts can often put them straight before the court case begins.

They do underline how poorly recognised the neuro-rehab field is, however.

All of the big questions the court needs to know about how a brain injury will impact on a person’s life can be answered within the neuro-rehab community.

What is their life expectancy? How have their employment prospects changed? What are their immediate and future care needs? Are there issues around their capacity to make decisions? To what extent are they at risk from the myriad of other problems that often come with brain injury, like depression and speech difficulties?

Neuro-rehab physicians are clearly best placed to answer all of these questions.

Furthermore, I believe the many other professions that work with brain injuries should also play a part in certain court cases.

Whether relayed by the physician, or directly by the professionals themselves, speech and

language specialists, neuro-rehab physios and occupational therapists, neuropsychiatrists and neuropsychologists all have valuable expertise to share.

Their input will give the court the clearest possible picture of the life-time fallout of a brain injury. In turn, compensation packages will be as accurate and fair as possible.

In recent years, the firm I co-direct, National Neurological Rehabilitation Chambers, has added a wider range of neuro-rehab professionals to our books. We believe their involvement in courts will become more prevalent in coming years, as compelling evidence for the many ways brain injuries affect lives grows.

A good neuro-rehab expert, from the correct professional background, can give the most relevant and accurate view of the claimant’s problems and will be of value not only to claimant lawyers but to defendant lawyers as well.

After all, a good rehab programme will reduce costs in the long term. People will improve more effectively after a period of good quality rehab and thus need less care overall.

Ultimately, they will also stand a greater chance of returning to some form of employment.

For now, neuro-rehab sector bodies, charities and collectives, such as the soon-to-belaunched brain injury parliamentary group, have a job to do in better defining and promoting our field.

Mike Barnes is a consultant neurologist, a rehabilitation physician and managing partner of the National Neurological Rehabilitation Chambers. www.nnrc.org.uk Mike Barnes

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fixing a fractured system

The rise of spinal cord injuries in recent decades has left the UK’s healthcare sector struggling to keep pace. NR Times met internationally-renowned expert on the condition, Wagih El Masri, in search of a catch-up plan.

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There hasn't been a single bed for spinal injury patients added to the national stock in the last 30 years

After over 45 years in the spinal cord injury (SCI) field, Wagih El Masri is well placed to prescribe what’s needed to improve treatment of the condition; especially in Britain, where the Egyptian-born consultant has trained and worked since 1971.

He is former chairman of the British Association of Spinal Cord Injury Specialists (BASCIS), ex-president of the International Spinal Cord Society and has advised the World Health Organisation on SCIs. Other achievements include fundraising £4.5m to rebuild the Midland Centre for Spinal Injuries, 136 publications and receiving commendations from the House of Lords for his spinal injuries work.

He was also the last doctor trained by Sir Ludwig Guttmann, the legendary pioneer of the Paralympics and spinal injury centres.

When he suggests ways that SCI could be better managed in the UK, therefore, he speaks with genuine authority built up through years of experience; and NHS decision-makers should perhaps take note, amid increasing annual spinal injury numbers.

Given a hypothetical pot of millions by NR Times to improve the treatment of SCI, his priorities would not only be to pump funds into emerging technologies or drug development.

In fact, at the very top of his agenda would be to invest in something far more basic – beds.

“Although the incidence of new injuries is small at 10 to 15 per million per year, I estimate that the prevalence of SCI has almost trebled in the last 30 years. Yet there hasn’t been a single bed for spinal injury patients added to the national stock in that time,” he says.

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Some 40,000 people in the UK are living with an SCI, according to the Back Up Trust, with 1,000 people newly injured each year.

Globally, between 250,000 and 500,000 people per year injure their spinal cord.

Such numbers have contributed to a creaking system in the UK, El Masri believes.

“Acutely injured patients and those with long-term paralysis who develop medical complications can no longer be admitted to spinal injury centres as quickly as they could in the past as they are almost always full.

Patients are therefore spending weeks or months in hospitals or trauma centres which, although well geared to keeping patients alive, don’t have the necessary resources to meet the complex needs of these patients.

“They lack the full complement of trained healthcare professionals with the necessary knowledge, expertise and skills. The right equipment, processes and environment required to meet SCI needs and the challenges are also lacking.

“Although few patients die, a significant

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They lack trained healthcare professionals with the necessary knowledge, expertise and skills

number develop complications that are preventable by the time they are admitted to a spinal injury centre, which in turn increases hospitalisation levels.”

As El Masri explains, these complications can be wide ranging, given the spinal cord’s role as the highway of traffic between the brain and all bodily systems.

“Damage causes poor communication or absence of communication between the brain and the various systems of the body.

This not only leads to paralysis but also causes a multi-system malfunction affecting

almost every system of the body.

“Each malfunctioning system adds to disability and remains vulnerable to further complications unless the patient fully recovers. Many of these complications are a risk to life and a potential source of a range of short and long-term problems. They can cause neurological deterioration and prevent neurological recovery.”

In many cases, patients lose the ability to feel pain, making diagnosis challenging for clinicians looking for signs and symptoms they may have been taught at medical school.

To prevent spinal injuries escalating into a multitude of possible complications – and to maximise recovery from them – El Masri considers ‘active physiological conservative management’ (APCM) as the optimum approach for patients.

From the early hours of the injury, this involves simultaneous scrupulous care of the injured spine and the effects of the injury on the respiratory, cardiovascular, urinary,

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gastrointestinal, dermatological, sexual and reproductive functions.

Ideally, says El Masri, this is carried out in spinal injury centres where there is a critical mass of expertise and skills to deal with the spectrum of complex issues. Unlike many hospitals and trauma centres, the spinal injury centres also have the sheer numbers of SCI cases to maintain their expertise and hone their skills.

“With traditional APCM of the injury and its wide-ranging effects in spinal injury centres, most patients make some degree of neurological recovery and a significant number regain the ability to walk. The great majority of those who did not recover to walk, nevertheless recovered enough to be able to live dignified, productive, enjoyable and often competitive lives free of pain for decades following their discharge from the centres.

“Unfortunately the restricted bed capacity in the NHS spinal injury centres and the very limited capacity of a safety net for these patients in the private sector have, in my experience, resulted in a vicious circle of problems that have negatively affected both quality and cost of treatment.

“Over the last two decades, we have also witnessed the increasing fragmentation of the service with patients being operated in general hospitals before being transferred to spinal injury centres - or to a rehabilitation centre before reaching a spinal injury centre. This is despite the fact that almost all complications can be prevented in spinal injury centres and most patients make a good neurological recovery.

“Surprisingly neither the added human cost nor the monetary cost of such fragmentation leading to the deterioration of outcomes has to-date attracted interest or attention."

One criticism of APCM among some rehab professionals is that patients are required to spend four to six weeks lying down in a ‘recumbent’ state until full spinal cord reflex activity returns. This period is essential, however, according to El Masri.

“Recumbence ensures rest to injured tissue and prevents hypotension, a drop in vital capacity, drop in oxygen saturation, pneumonia, generalised sepsis from pressure

Wagih El Masri sores or urinary infections, all of which can cause neurological deterioration or prevent neurological recovery. Rest to injured tissues until natural healing is achieved ensures a pain-free, almost fully flexible spine in the short, medium and long term.

“This pain free flexibility of the spine is required to achieve the best level of independence in personal care, hygiene and activities of daily living. Other purposes are to minimise the risk of pressure sores when skin perfusion is most vulnerable because of the absence of sympathetic drive. Moreover, during the period of spinal shock, nursing procedures such as assisted coughing, pressure relief, intermittent catheterisation, bladder and bowel care and management of incontinence, can all be carried out more effectively and safely in patients who are recumbent than in those sitting in a wheelchair.”

A major source of pressure on capacity in the UK is the growing number of injuries among older people. Looking after the country’s ageing population is one of the biggest challenges facing the NHS today. Like so many areas of healthcare, spinal injury treatment faces its own battle in adapting to the gradual upward trajectory of

life expectancy.

“We are seeing more and more elderly patients sustaining all sorts of falls. Many UK homes have narrow, steep and potentially dangerous staircases, which don’t help. Also, as soon as the sun comes out, increasingly active octogenarians decide to clean the gutters or fix the roof. Some patients continue to cycle while in their sixties and seventies and are involved in collisions.”

Statistically, males are most at risk of spinal cord injury at 70+ and also in young adulthood (20-29 years). For females 60+ is a when most injuries occur, as well as in adolescence (15-19).

Studies report male-to-female ratios of up to 4:1 among adults. The World Health Organisation puts mortality risk at its highest in the first year after injury and remains high compared to the general population.

People with SCI are two to five times more likely to die prematurely than people without.

With such high stakes facing people at the severe end of the scale, the clamour for the next breakthrough that could restore functions and preserve life is understandably strong. Yet all too often patients are left disappointed, says El Masri.

“There are many exciting experiments and research projects aimed at improving the neurological outcome of SCI. These are to be commended and encouraged. But evidence of equality or indeed superiority in all relevant outcomes including cost-efficiency of any new treatment over the traditional APCM treatment is essential if real progress is to be made and resources are not to be wasted.

“Unfortunately in 46 years of working with the condition, I haven’t seen anything that produces better neurological outcomes than APCM for the majority of the patients.

“It creates a great deal of unhappiness and frustration for patients when, every few months, they read in the media that someone has discovered the next miracle cure for spinal injury. People have gone to other countries for stem cell treatment or access to new equipment, only to come back at best, as well as they were before.

“It’s understandable that people will do

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whatever it takes, if they are paralysed.

But solutions that are often experimental are portrayed as being the answer and the patients are not well versed in the field enough to be able to see them for what they are. Patients in the first few years after their injury are the most vulnerable to this.

Patients who are five or six years down the tend to have adjusted and don’t swallow these claims.”

Of course, there is plenty of ground-breaking work underway to encourage spinal injury patients and their families. Nanotechnology, stem cells, sophisticated orthotic devices and brain computer interfaces are just some of the areas that could improve the outlook for SCI cases in future For now, though, El Masri believes there is no evidence that any SCI interventions deliver equal or superior outcomes to APCM. “If a patient presents to a spinal injury centre within 48 hours of injury with no flicker of movement in their legs, but can feel pinpricks in their seating area, they have a 75 per cent chance of walking again with APCM.

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Patients who present with more than a flicker of movement will do even better. The great majority of patients with less neurological sparing on presentation when treated with APCM will improve neurologically but not necessarily walk.

“Unless you can manage every system of the body affected by the spinal cord damage – as well as is done through APCM – such neurological recovery may not occur.”

El Masri’s stoic belief in APCM comes from years of working with the approach and seeing its results, while also witnessing numerous false dawns of supposed cures.

Yet, one underlying factor in the UK continues to hinder its ability to affect change in some patients; attitudes towards

post-injury surgery.

Patients with intact neurology but a biomechanically unstable spine can benefit from surgical stabilisation of the spine, enabling them to be discharged from hospital within a few days of surgery.

Surgical decompression of the spinal cord is also common.

In the backdrop, there is a widely-held belief that early surgery of patients with traumatic SCI has advantageous outcomes over late surgery. This has fuelled the assumption that early surgery must also give better outcomes than APCM. As El Masri noted in a white paper published earlier this year, consequently, most patients with traumatic SCI are surgically managed

It's understandable that people will do whatever it takes if they are paralysed. But solutions that are experimental are often portrayed as the answer

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instability or the presence of cord compression. El Masri urges more research to test whether the role of early surgery after SCI can match or eclipse the outcomes of APCM, to justify how commonly it is currently being carried out.

“The current standard of care is surgery, perhaps on the back of the emergence of CT and MRI scans, which enabled us to see things we couldn’t previously.

Clinicians without the experience of the APCM or of its outcomes who see spinal canal encroachment or compression, understandably assume that these things are harmful to neurological function. Over time, the great majority have continued to operate on this assumption, rather than evidenced assertions.

“The assumptions are logical but, if science didn’t challenge logic, we’d be stuck in the

18th Century. By all means, if people who undergo early surgery do better than they were expected to with APCM, then continue, but in my experience, they don’t. We need more evidence to support both options.

“Until we establish what works best for the individual patient, we need a safety network of beds with supportive fit-for-purpose resources to manage the patient holistically, humanely and cost effectively. Regardless of which organisations take responsibility for this extra capacity, it must be managed ethically and follow good governance."

A final item on El Masri’s hypothetical SCI shopping list is funding for more collaborative studies into exactly what happens in the first few hours after injury.

"We also need to know more about why spinal cord tissue does not regenerate, unlike every other tissue of the body," he says.

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before transfer to the spinal injury centre.

This is despite limited evidence of the equality or superiority of outcomes, or of cost benefits, over APCM. He says: “Surgery is necessary in some cases.

The majority of the spinal injury centres have the surgical skills in their host hospital.

They are able to manage patients who have been surgically treated while ensuring the simultaneous management of the range of effects of cord damage. This prevents complications and maximises neurological recovery.”

A recent Cochrane review states that “the current evidence is insufficient to enable the author to comment on the benefits or harms of spinal fixation surgery in patients with traumatic SCI”.

APCM’s results, meanwhile, are irrespective of the mechanism of injury, biomechanical

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insight

social media menace

Brain injury professionals were recently given a stark reminder of the predators threatening their vulnerable clients on social networks.

Andrew Mernin joined them

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When a young British woman with learning difficulties announced she was marrying an Egyptian she’d met online, her guardians were unsurprisingly sceptical.

The 21-year-old, who'd been brain injured in a car accident as a child, was going to pay for Asrat to come to the UK, where they’d live happily ever after.

What her support workers found next highlights the dangers lurking on the web.

After being told he wasn’t getting a one-

way ticket to England, Asrat proceeded to explain in detail to the girl how and why she should commit suicide.

She didn’t follow his advice but the case was passed on to the police. Since Asrat used the encrypted messaging platform BBM, however, tracking him down was an immense challenge.

The case shows the toxic combination formed when vulnerable people stumble into dark forces intent on

insight

She used Facebook to share an intimate picture of herself with some boys and was prosecuted for circulating child pornography

preying on them via social media.

This and other such stories were shared by case management expert Angela Kerr with a room full of brain injury professionals in Westminster recently.

“There’s this massive void of virtual space and there are people in boats hanging on the edge with fishing lines, hoping to catch people,” she said. These victims include the brain injured boy who sent intimate pictures to a girl via Facebook. Rather than reporting it, the girl’s father secretly tried to blackmail the boy.

Kerr, who chairs brain injury case management body BABICM and runs AKA Case Management in Nottingham, also told the tale of a 13-year-old with a history of trauma who became a pariah in her village.

“She used Facebook to share an intimate picture of herself with some boys and was prosecuted for circulating child pornography. She was facing a custodial sentence and being added to the sex offenders register, until the clinical arm of the government’s disability programme stepped in to stop it.

“Due to the girl being from a small community, and the story appearing in the press, the local community turned against her, labelling her a sexual deviant and a pervert. She was bullied by children, and adults, and had to move areas.”

What astounded Kerr in her research into social media, and brain injury case managers’ experiences of it, is the sheer number of platforms in existence.

“The main risk from many of them is the ability to talk to strangers, which can lead to exploitation, grooming and bullying,” she said.

Added to the well-known stable of Twitter, Facebook and LinkedIn, are scores of emerging platforms.

From joke-rating sites to ‘Fmylife’, which charts users' daily disasters, platforms

of every niche imaginable are bringing strangers together online.

Research suggests social media users with brain injuries tend to use multiple sites.

A US study published in April, which monitored individuals with traumatic brain injury (TBI) at 10 specialist centres, found that 74 per cent of them were internet users – compared to the general North American population’s 84 per cent average. Of the TBI internet users, 79 per cent had a profile account on a social networking site, with more than half using at least two sites.

Smartphones were the most prevalent means of internet access for TBI persons.

Speaking at the Head First conference, Kerr drew attention to a number of particularly risky sites. Among them is Habbo Hotel, an online game and community aimed at teenagers, that enables users to navigate an imaginary world via an avatar, meeting real-world people along the way and customising ‘hotel’ rooms.

It was hit by scandal in 2012 when undercover journalists found children were being exposed to explicit content.

The Daily Mail reported that a 13-year-old girl was bombarded with pornographic chat and asked to strip naked on a webcam. The site has since set out guidelines to parents and vowed to get tough on anything that puts young users at risk.

Games can be a particularly dangerous area for vulnerable adults, as well as young people. The ugly realities of the internet can very quickly come crashing into the fantasy realms in which users are immersed. The starkest proof of this is the murder of Breck Bednar in 2014.

At just 14, he was stabbed to death by a ‘predator’ he met online who groomed him through video games. Risks loom for vulnerable adults too.

“Some brain injury clients are obsessed by playing on their Xbox or Playstations until

the early hours of the morning,” said Kerr.

“Gaming platforms are mostly about creating virtual worlds and linking users with people across the world in chatrooms.

MovieStarPlanet is one of the highest risk ones.

"You can create a chatroom where you can be any kind of movie star you wish.

"This is dangerous as you can be anonymous yet attractive due to the person you are representing.”

Chatrooms are a common denominator among the riskier social media platforms.

“MeowChat, for example, is a social network that allows you to talk with strangers in a public room, with an option to go into a private room.

"The risk is that clients can talk to strangers and no-one else would know.”

The blossoming relationship between location technology and social networks is bringing new dangers to the fore.

While dating app Tinder shows users other singles within a few miles of them, Happn is a little creepier. When a user opens it on their phone, they see other users with whom they’ve physically crossed paths with throughout their day.

“It’s like we’re moving towards a situation where, if it hasn’t happened on social media, it hasn’t happened at all,” said Kerr.

Pressure is mounting on social media sites to improve the way they protect children and vulnerable adults. Peter Wanless, the chief executive of children’s charity NSPCC, said in June that letting children on social media sites was as dangerous as letting them go to a nightclub. The government has urged sites to be more vigilant about dangerous content and activity, in the wake of recent terror attacks.

Google, which owns YouTube, along with Facebook, which owns WhatsApp, and Twitter are among the tech companies being urged to take the responsibilities that come with their great influence more seriously.

As Kerr closed her talk in London, she left delegates with the words of murdered teenager Breck Bednar’s mother: “I want this tragedy to open the eyes of everyone to the dangers of online predators.”

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If we did a lot more to improve sleep early on after TBI we would probably speed up recovery

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why trauma factors are more than good friends New discoveries about the intimate link between sleep problems and trauma are waking scientists up to the power of forty winks in neuro-rehab.

evolve together; they go hand in hand.

“It would be very interesting if sleep improved and then consciousness and cognitive function improved right after.

Given the implications of sleep in terms of recovery, brain function and overall health, it would be plausible to assume that if we did a lot more to improve sleep early on after a TBI you would probably speed up recovery, but it’s not proven yet.”

The research is a joint effort by the Center for Advanced Research in Sleep Medicine, at the Hôpital du Sacré-Coeur de Montréal, and l'Université de Montréal in Quebec.

Its latest paper, published by the American medical journal Neurology shows the results of a study 30 acute, hospitalised TBI cases.

Most of the patients, aged 17 to 58, were in a coma when they were admitted to the hospital and all initially received care in an intensive care unit.

Injuries were caused by motor vehicle accidents for 20 people, falls for seven, recreational or sports injuries for two and a blow to the head for another.

Catherine Duclos

Brain injuries and sleep problems are wellknown bedfellows.

Around 30 to 70 per cent of traumatic brain injuries (TBIs) result in sleep disturbance, with insomnia, fatigue, narcolepsy and sleep apnea among a range of complaints.

Pain and depression that often come with TBI can also hinder a good night’s sleep.

It is indisputable that trauma damages sleep. Far less is known, however, about the role sleep plays in the rehab journey after brain injury.

Thanks to scientists in Canada, this is changing. Their research has unearthed new potential links between sleep and faster TBI recovery.

They have found that recovery of consciousness and improvement in sleep disturbances appear to work in parallel.

“If you fix the sleep problems, could you then speed up recovery?

"That’s what we’re hoping for,” says Catherine Duclos, lead investigator on the ongoing study.

“We’ve found that consciousness and sleep

They were hospitalised for an average of 45 days, with monitoring for the study beginning an average of 21 days into a person’s stay.

Each person was monitored daily for an average of 11 days for their level of consciousness and thinking abilities, using the Rancho Los Amigos scale, which ranges from one to eight.

They also wore an activity monitor enabling researchers to measure their sleep.

Researchers found that consciousness and thinking abilities improved as measures of quality of sleep did, showing a clear, linear relationship.

One measure, the daytime activity ratio, shows the percentage of activity that occurs during the day.

The study showed that participants reached an acceptable sleep-wake cycle, with a daytime activity ratio of at least 80 per cent, at the same point as when they emerged from a minimally conscious state.

The participants still had inadequate sleep-wake cycles at a score of five on the Rancho Los Amigos scale, where people are confused and give inappropriate responses to stimuli but are able to follow simple commands.

Sleep-wake cycles reached adequate

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levels at the same time as people reached a score of six on the scale, which is the point at which people can give appropriate responses while still depending on outside input for direction.

At that level, they can remember relearned tasks, but cannot remember new ones.

The results were the same when researchers adjusted for the amount of time that had passed since the injury and the amount of medications they had received while they were in the ICU. “It’s possible that there are common underlying brain mechanisms involved in both recovery from TBI and improvement in sleep,” wrote the report’s author Nadia Gosselin.

On the next stage of the study, Duclos says: “One hypothesis about why sleep disturbances occur after TBI is that the circadian or biological clock is located in the brain.

"So we assume that a blow to the head will dysregulate it.

"We’ll be looking for markers of the clock to see if it’s working properly and is the cause of sleep disturbances.

“In the early stages after a TBI there is a lot of inflammation and lots of neuronal deaths, mostly in the frontal part of the brain.

"There is also axonal [nerve fibre] damage throughout the brain.

"Could it be that the regions of the brain

Sleep is a neglected function in neuro-rehab and goes hand in hand with recovery

that need to connect to initiate sleep might not be able to do so anymore?

"Or could the clock be being influenced?”

Duclos also points to the possible significance of the hospital setting on sleep in the aftermath of TBI. “We have also been comparing TBI patients to orthopaedic ones to investigate whether it’s really the brain injury causing the disturbances, because we know the hospital setting is not the best for sleep.

“Often hospital patients don’t have regular access to natural light during the day and there’s too much light at night, with lights turned on during staff interventions.”

These factors can have a significant influence on sleep patterns.

"If patients had more natural light or even light therapy during the day, that might better train their circadian clock.

"Also, there's the potential impact of melatonin, the sleep hormone which is secreted in the evening and at night to

help us sleep. It is very sensitive to light.

Therefore, when your eyes are exposed to light, its production is suppressed.”

While the intricacies of the relationship between sleep problems and TBI are yet to be fully proven, Duclos is certain that the power of sleep in neuro-rehab is being underutilised.

“It’s a neglected function in neuro-rehab.

I often hear things like ‘patients aren’t here to sleep, they are here to recover’.

They seem to forget that sleep goes hand in hand with recovery and is intimately tied to our immune function and the generation of new cells and affects the entire body, not just the brain.

“I think more could be done to organise rehab sessions around naps – and to promote rest periods throughout the day so patients are more refreshed when they participate in rehab activities.

“Sleep disturbances are so common in rehab centres.

"But also in the chronic phase, several months or years after the injury, not much is done to help with sleep problems.

"In a lot of cases, individuals can’t go back to work because they are too tired or require multiple naps through the day.

"If we understood more about where these disturbances originate, we could target treatment a little better than simply giving sleeping pills.”

Sleep loss heightens neuro disease risk – study

New evidence linking a chronic lack of sleep and the onset of neurological diseases has been uncovered in Italy.

Scientists at the Marche Polytechnic University found that astrocytes – brain cells which destroy and digest worn out cells – become overactive in chronically sleep-deprived mice. As a result, they could cause long-term brain damage.

Lead researcher Michele Bellesi told New Scientist that the findings could explain a link between diseases like Alzheimer’s and a lack of sleep.

He said: “We show for the first time that portions of synapses are literally eaten by astrocytes because of sleep loss. They are like old pieces of furniture, and so probably need more attention and cleaning [but] we already know that sustained microglial activation has been observed in Alzheimer’s and other forms of neurodegeneration.”

In chronically sleep-deprived mice, astrocytes were active in 13.5 per cent of synapses. This compares to six per cent in well-rested mice and eight per cent in those that had lost eight hours of sleep.

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events

Dates for your diary

aug17 / 24

Scottish Head Injury Forum (SHIF) Event: Who’s who – the A to Z of ABI. Easterbrook Hall, The Crichton, Bankend Road, Dumfries, DG1 4TA. Contact info@shif.org.uk for details.

sep17 / 14

Tech Con 2017: Get up-to-date on technological developments across a wide range of different fields all in one go.

Pullman International Hotel, St Pancras, London, NW1 2AJ. Bookings via www.abisolutions.org.uk.

14

From Roadside to Rehabilitation: A Patient’s Journey.

Headway Lincolnshire Brain Injury Conference.

Headway Lincolnshire, The Len Medlock Centre, St George’s Road, Boston, Lincolnshire, PE21 8YB. Call 07546592526 or email info@headwaylincolnshire.org.uk.

16 - 21

XXIII World Congress on Neurology Kyoto, Japan. www.2017.wcn-neurology.com.

19

Specialist Training From Brain Injury Experts (9.30am – 4.15pm).

Worth five training points.

7 Bedford Row, London, WC1R 4BS. Email julie.mccarthy@ braininjurygroup.co.uk to book.

21 + 22

Prolonged Disorders of Consciousness training, Regional Hyper-acute Rehabilitation Unit.

Day 1: A pragmatic approach in assessment and management from acute to the community.

Day 2: The opportunity to participate in practical WHIM and CRS training.

Northwick Park Hospital, Harrow. £75 per day. Contact merry.wright@nhs.net / 02088692808.

27 + 28

BIRT Conference 2017.

Hilton Glasgow, 1 William Street, Glasgow, G3 8HT. Contact BIRTconference@thedtgroup. org or call 01924 269403.

28

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

Join Ed Vidnes and Sara Isenberg talking about CoP issues including DoLs, best interest and quality of life versus financial restraints.

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

oct17 / 12

Navigating the Mind Field: Mild Traumatic Brain Injury Gain understanding of the complex medical arena of mild traumatic brain injury.

Pullman International Hotel, St Pancras, London, NW1 2AJ. Bookings via www.abisolutions.org.uk.

18

One-day introduction to motivational interviewing in brain injury rehabilitation: Advancing your practice.

VP Forensics Lake View Drive, Sherwood Park, Nottingham, NG1 50HT. Find details via www.abisolutions.org.uk.

25

One day introduction to motivational interviewing in brain injury rehabilitation: Advancing your practice.

Anthony Gold, Counting House, London Bridge, SE1 2QN. Find details via www.abisolutions.org.uk.

nov17 / 17

CMSUK Celebration & Awards Lunch. Awards presented by guest speaker James Cracknell.

Grange City Hotel, London.

Contact info@cmsuk.org.

Please send details of your event to editor@aspectpublishing.co.uk

Please check with contacts beforehand that arrangements haven’t changed. Events organisers are also asked to notify us at the above address of any changes or cancellations.

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Sponsored by:

clocking off

Shaky science

‘World leaders act as if they’ve suffered a traumatic brain injury’.

That was the recent Independent headline reporting a new chapter of weird brain science. Apparently posturing Putin and twittering Trump have undergone functional changes to their brain, brought on by their rise to power. Firstly, given the state of world politics today, isn’t the Independent’s headline an insult to people with brain injuries? Secondly, the study from psychologists at UC Berkeley seems to have chosen a decidedly dodgy comparison. Powerful people apparently lack the “mirroring” ability needed to show empathy, they struggle to read feelings and judge the tone of their responses.

Obvious parallels with TBI are there.

The big difference, of course, is that world leaders choose to switch off these abilities by anaesthetising them to get to the top.

If only the severely brain injured could do the opposite simply by choice – and switch lost character traits back on without the battle of rehab.

Holy moly Suffering a brain injury allegedly makes people more religious, scientists claim. Researchers from Northwestern University in Illinois, USA, found patients who had a brain trauma were less willing to accept new ideas and became more extreme in their religious beliefs. The study, published in the journal Neuropsychologia, found that lesions in a part of the brain known as the ventromedial prefrontal cortex were linked to higher levels of religious fundamentalism.

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Could flags replace footballs?

Silence is golden

If you’re terrified about an upcoming conference talk, why not take a leaf out of Iain Anderson’s book? The brain injury case manager at Head First LLP recently delivered an entire speech at a packed-out hall of neurorehab people in London without saying a word.

Instead, sentences flashed up on a screen, as he simply tapped at his laptop to bring up the next projection. But this was no coward’s way out. The topic was sex and relationships. The awkward feet shuffling, gasps and sniggers at his provoking – and even smutty – questions were a brilliant demonstration of why talking about sex after brain injury is still so tricky.

Flags flying high

Efforts to curb concussion in youth football have been stepped up to the ultimate level across the pond. Following revelations about head injuries and CTE in NFL, many schools in America have decided to ditch the pigskin completely and replace it with flags. Flag football will enjoy its first full league season next year and is one of the US’s up-and-coming sports. With parents here worried about the impact of heading footballs and concussion in rugby, it may well be coming to a muddy park near you soon.

Big screen scanning Movie moguls could soon be investing in their own brain scanning technology to make a science out of box office success. Scientists recently monitored shared brain activity of an audience of moviegoers while they watched trailers - and uncovered a way of predicting a blockbuster. The trailers which induced the most collective emotions – such as when everyone laughed or flinched – correlated with the highest ticket sales once released. “The influential trailers transcend the differences among people, so they somehow captivate us in a similar way,” said neuroscientist Sam Barnett, who co-authored the study.

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