NR Times (Q3 2018 edition) by aspectpublishing

issue 7 Q3 2018

neuro rehab

biting back

times ice age Brain cooling study raises rehab hopes

An age-old miracle cure returns

QUARTERLY

rolling recovery

Saving lives in the concrete jungle

the big debate What now for brain injury care in Britain?

power surge

Switching onto the spinal tech revolution mapped out conflict zones of client care

We are the UKâ&#x20AC;&#x2122;s premier professional body for case managers & other professionals working with individuals who have a brain injury & complex needs. Join us today to benefit from: Specialist professional development A code of ethics & representation Exclusive resources Events Member discounts Research Professional networks

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welcome

EDITOR'S NOTE

Welcome to the latest edition of NR Times, your quarterly update on issues affecting professionals working with brain and spinal injuries and neurological conditions. If forecasts were right, you're reading this with the heatwave still sizzling along. As you struggle to cool off, have you noticed your concentration levels dropping? New research suggests heat slows the brain down. A Harvard study compared brain speeds between students with and without air conditioning. Those without were significantly slower at maths and cognitive speed and memory tests. The paper offers a fleeting glimpse at a largely misunderstood factor in brain-related science and healthcare; temperature. As we report this issue, however, where heat can hinder, the cold can heal. It’s long been known that cooling the brain after an injury can help to limit damage. Yet little is known of exactly why – or how to optimise such treatments. But progress is afoot. Scientists in Scotland are leading the way towards life-saving cooling devices to be used after brain injury and stroke. Find out more on p36. Another often-overlooked influencer on brain health is diet. Fuelling the body in the interests of the brain is nothing new – in fact, the food-based therapy we cover this quarter has been around for almost a century. It is having a resurgence though, as professionals realise the areas of the brain nutrition can reach that some drugs cannot. Perhaps more widely celebrated as a force for good in neuro care than cooling and diet, is technology. Brain and spinal tech development, backed by vast budgets around the world, promises much for the future of neuro-rehab. But the path from lab to

ward can be frustratingly long. Sometimes, perhaps through overly eager university PR teams, we see very early stage breakthroughs vaunted as the next big thing. It may be years before they see the light of day in a hospital setting – if at all. In this edition we seek out the real picture of the technologies we should be getting excited about. You’ll also find the first in a series of our ‘study guide’ features, which neuro-rehab professionals in various fields should find useful. If you missed it, you can also catch up on the recent Commons debate on brain injury. We hope you find something to inform and inspire you this quarter. Failing that, NR Times doubles up as a handy fan to help keep your brain at prime temperature in this blistering heat. Andrew Mernin Andrew@aspectpublishing.co.uk

Published by Aspect Publishing Ltd in association with UKABIF 20-22 Wenlock Rd, London, N1 7GU. Registered company in England and Wales. No. 10109188. Features labelled 'sponsored' are paid for by our sponsors who support the production of this magazine.

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contents

news The latest from the world of neuro-rehab

believe the hype Your guide to a surprisingly common threat

centre ground Putting clients first in the face of conflict

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special k An age-old miracle cure bites back

ice age Brain cooling study raises rehab hopes

contents

The

BIG DEBATE

new horizons The spinal tech we really should be excited about

The nation's brain injury challenge dissected

rolling recovery Saving lives in the concrete jungle

events

Dates for your diary in the months ahead

clocking off

Notes from the sidelines of neuro-rehab

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analysis

Short-termism, poor access to care and gaping holes between paediatric and adult services are exacerbating the burden of child brain injuries, a report suggests.

Children let down by brain injury care gaps An in-depth study conducted in the US and

the US cause around 640,000 A&E visits, 18,000

employment, and engagement in a healthy lifestyle.

submitted to the American Congress outlines many

hospitalisations and 1,500 deaths.

“It is widely recognised that children with

issues hindering the delivery of rehab to brain

The leading causes of these incidents are

brain injury are under-identified for health and

injured young people.

unintentional falls and being struck by or against

educational services and under-served by existing

While carried out by US-focused organisations –

an object, whereas for those 15-24 years of age, the

support, placing them at risk for poor health and

the Centers for Disease Control and Prevention

leading causes were motor vehicle crashes and falls.

educational outcomes.

in collaboration with the National Institutes for

Sports and recreational activities accounted for an

“Understanding the gaps in care and developing

Health – it offers insights for child brain injury

estimated 325,000 A&E visits among children

approaches for optimal assessment, access to

treatment globally.

and teens.

services and service delivery is critical to ensuring

The extensive paper, The Management of Traumatic

Against such numbers, the report warns: “There

that children with TBI have the best possible

Brain Injury (TBI) in Children: Opportunities for

is frequently an incomplete understanding about

treatment and outcomes.”

Action, suggests a lack of knowledge, infrastructure

the effects of TBI beyond the initial injury among

One of these gaps is a “substantial variation” in

and consistency in services is at the heart of

parents, healthcare professionals and educators.

acute injury care for children. “Not only are there

problems in getting young people the long-term

This often creates barriers to optimising outcomes

inconsistences in TBI assessment, but also in the

treatment they require.

for children across their lifespan, including

comprehensiveness of discharge recommendations

Annually, TBIs in children (aged 14 and under) in

the achievement of high school graduation,

for all severity levels of TBI,” the report says.

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analysis Other gaps include: • A lack of monitoring of children with a TBI over a

they gave the RP to GPs AND patients.

prolonged period of time after their injury

As it launched its campaign, the alliance said:

• Poor awareness of the implications of brain

“The rehabilitation prescription is a valuable

injury and possible pathways among parents

tool that documents the rehabilitation needs of

• Difficult access to schools-based support services

the individual with an acquired brain injury. It

• Following concussions, a dearth in ‘return to play’

has no value if the individual and their GP don’t

guidelines for activities beyond organised sports

receive a copy. And if the individual and the

• A drop-off in access to care following the

GP don’t know what rehabilitation is required,

transition from adolescence to adulthood

then no access to services can be planned or

• Limited “TBI recognition” training for

implemented.”

professionals involved in the care and support of

It remains to be seen whether RP mark two will

young people

fix these issues. In recent correspondence with

• A lack of hard evidence and research on

the ABI Alliance, NHS England said: “Key things

long-term outcomes for children with TBI

that will be included in every RP-2019 include a clear list of actions for the GP, the patient’s

Although the report focuses largely on the US, its findings mirror many of the challenges faced in the UK, says Katy James, head of the Children’s Trust's brain injury community service. “Our experience of supporting children in the community is that all too often the full impact of a child’s brain injury is not recognised and in many cases the injury is forgotten about as the

Will new rehab prescription fix old failings?

ongoing rehabilitation needs and the services that they have been referred to.” A contact number for a major trauma centre (MTC) key worker on hand to give advice, and a ‘patient comments’ section, will also be included. Another of the alliance’s recommendations is that the RP should be used for all patients with ABI, not just those that have been through

child gets older. Children and young people with

A new version of the rehab prescription

an MTC. NHS England’s response suggests

acquired brain injury often experience ‘hidden

(RP), which sets out an individual’s required

this may be looked at in the future. It told the

disability’ - cognitive, communication and

treatment after a trauma, is to be introduced

alliance: “We hope the new RP will exceed

emotional difficulties that are not immediately

next year.

the recommendations of [the ABI Alliance].

apparent or are not understood by care givers

NHS England says the RP has been updated

Although it has initially been designed for major

or educators.

by clinical experts and patient representatives

trauma patients, it is anticipated that this RP

“We also know from experience that these

and is currently undergoing a final review in

could be adapted for other patient groups,

difficulties can become more of a problem

primary care.

including others with ABI.” It is hoped, therefore,

as children face the challenge of moving into

Once launched in April next year, 'RP-2019'

adolescence and towards adulthood.

will be developed with the involvement of the

“And yet we find that support services in the

patient and/or their carers, the authority says.

UK are limited and often there is a lack of

Crucially, copies will apparently be given to the

collaboration between health, education and

patient, their GP and their next care provider. If

social care. Provision can be haphazard and

this point is delivered, this would fix what many

influenced by postcode, the nature of the injury

neuro-rehab experts see as a major flaw in the

and parental ability to have a voice for their child.

RP system.

Young people moving from children to adult

Last year the Acquired Brain Injury (ABI)

services often hit a ‘black hole’. While recent

Alliance launched a campaign to ensure that

developments from regional networks and

all patients leaving hospital after treatment for

that RP-19 will eventually be mandated for use

awareness-raising activity is promising, there

an ABI receive a copy of their RP, with one also

in all trauma centres, not just MTCs.

remains no national framework and we are still

forwarded to their GP. A Freedom of Information

The alliance intends to continue campaigning

a long way off from a cohesive and equitable UK

request sent to all clinical commissioning groups

for everyone with ABI to get access to the RP. It

model of provision for children with acquired

in England last year showed that recognition of

is also pushing to better educate CCGs and GPs

brain injury. More needs to be done to build the

the RP was "inexcusably low", the alliance said.

on the role and need for RPs, as well as neuro-

evidence base and research the long-term impact

Of 24 trusts that responded, less than half said

rehab services generally.

Recognition of the RP was inexcusably low among CCGs

of ABI in order to shape services.”

MORE NEWS

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Brain injury movie comp opens

Authorities remain resistant to MS drug MS patients in the UK hoping to access the drug ocrelizumab on the NHS have suffered a setback. Ocrelizumab is an experimental drug which has been tested as a treatment for relapsing remitting and primary progressive MS. It is taken as an intravenous infusion every six months. Last November, the European Commission granted marketing authorisation for the drug to treat both active relapsing MS and early active primary progressive MS. Since then, UK bodies had been assessing it. In June the National Institute for Health and Care Excellence (NICE) approved it as a treatment for relapsing remitting MS, but rejected it for primary progressive MS in England and Wales. And now the Scottish Medical Consortium (SMC) has delivered its verdict. It says it is unable to recommend it as an NHS treatment for relapsing remitting MS in Scotland. It does not consider the drug to be cost effective for the NHS in Scotland as a treatment for relapsing remitting MS

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in comparison to the existing disease modifying drugs, the SMC said. The body states that Roche, the manufacturer of the drug, did not present a sufficiently robust economic assessment of the drug's use for it to be accepted. According to reports, the SMC submission for ocrelizumab for primary progressive MS has now been withdrawn. Ms charity the MS Trust reacted with disappointment to the news. Direct of development Jo Sopala said: “We are very concerned at the continuing delay for people with MS to access ocrelizumab in Scotland. “For people with relapsing MS, it expands the range of MS treatments by offering a different dosing schedule, a different mode of action, minimal monitoring and a low risk of side effects compared to existing disease modifying drugs. “In primary progressive MS, ocrelizumab is the first treatment which has been shown to slow down progression. “We will continue to make the strongest possible case for NHS Scotland's approval of ocrelizumab for both relapsing and primary progressive MS.”

The United Kingdom Acquired Brain Injury Forum (UKABIF) Film Award 2018 is now open for entries. The award, sponsored by Elysium Neurological, celebrates films by anyone interested in or affected by acquired brain injury (ABI). This year’s competition will acknowledge, recognise and reward a short film (no more than 30 seconds long), that enhances ABI awareness and understanding.

Anyone affected by brain injury is encouraged to enter. UKABIF is encouraging entries from individuals with a brain injury, their families or carers, students, the general public, care providers and voluntary organisations. Rehab multidisciplinary team, doctors in primary and secondary care, case managers, personal injury lawyers and social care workers are also encouraged to enter. The award is open to UKABIF members and non-members in the UK. There are four prizes of £250 to the winners. The deadline for entries is 28 September 2018 – films entered after this date will not be considered. Winners will be announced no later than the 5 November. See full details at www.ukabif.org.uk/filmaward/

App-y reading for stroke patients A new smart app designed to improve the reading ability of people who have suffered a stroke offers ‘significant’ improvements, a trial has shown. iReadMore provides computer-based reading therapy using written and spoken words and pictures, and aims to improve word-reading speed and accuracy. It was developed by the Aphasia Lab, part of the UCL Institute of Neurology. Stroke patients typically need around 100 hours of speech and language therapy (SaLT), to see a marked improvement. The NHS, however, provides only around 12 hours. The app will enable patients to have limitless hours of SaLT and researchers aim to make it available for general use. A trial of the app was carried out among 21 chronic stroke patients with central alexia, an acquired reading disorder that also affects speech and comprehension. Participants used the iReadMore app for two four-week blocks, each comprising 34 hours. Their reading ability was measured before, during and after the trial, which was funded by the Medical Research Council. iReadMore contains a large number of ‘trained’ words, which are regularly repeated during the therapy. It also contains ‘untrained’ words, which are matched for difficulty, but patients do not practice them. This allowed researchers to assess whether there was item-specific learning (when only trained words improved) or a general learning effect (when both trained and untrained words improved). On average iReadMore training resulted in an 8.7 per cent improvement in patients’ reading accuracy for trained words, with some individuals improving by as much as 25 per cent. The speed at which patients read the words also increased. There was no effect on untrained words. Follow-up tests three months later showed the improvements for trained words were largely maintained. During the trial, a second intervention was

Regular practice improves people's ability to relearn and remember words they are familiar with. also investigated, which used transcranial Direct Current Stimulation (tDCS). Here a small current is applied via a patch on the left side of the forehead to stimulate neural plasticity in the underlying brain. The effects of tDCS were apparent on both trained and untrained words, but the impact was considerably lower, averaging 2.6 per cent improvement in accuracy across the participants. Lead author Dr Zoe Woodhead said: “Strokes often cause damage to the left side of the brain, which is important for reading, speech and comprehension. “What this study shows is that regular practice with this reading therapy significantly improves people’s ability to relearn and remember words which we are familiar with. “In addition, the electrical stimulation further improves a stroke patient’s ability to read, but the effect is smaller than the iReadMore therapy.” Central alexia is the most common type of

acquired reading disorder in adults and is part of the generalised language disorder, aphasia. In the UK, there are more than 350,000 people with aphasia and around 260,000 of these will have central alexia. Alex Leff, professor of cognitive neurology at the UCL Institute of Neurology, said: “Following a stroke, patients get around four hours of speech and language therapy in hospital, and in the following weeks the NHS provides, on average, eight hours in the community. “While standard speech and language therapy is effective, patients need around 100 hours to significantly improve, so at least six times more than is currently provided by the NHS. “By making the iReadMore app publicly available, it means patients will be able to have therapy as often as they want, and gain steady improvements. “The application is intuitive and adaptive. The training gets harder for patients as reading improves, ensuring they have incremental improvements at a rate suitable for them.”

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Flawed head injury rules exposed in Russia Football’s global governing body has rejected calls to overhaul its new concussion protocols, amid several controversies at the recent World Cup in Russia. Under FIFA’s newly ramped up measures to protect against concussion, any player should be removed from the remainder of the game if there is even a suspicion of concussion. The team doctor must make the decision, not the player, who will naturally be inclined to stay on the pitch. In the group stages of the World Cup, the Peruvian Renato Tapia was knocked flat in a game versus Denmark but played on for a further 13 minutes before being substituted. After a brief check by medical staff, they deemed him able to continue. In his country’s game with Iran, Morocco’s Nordin Amrabat suffered concussion and memory loss after a blow to the head. Under FIFA’s ‘return to play’ guidelines, he should have had a minimum six-day break before playing again. Yet he lined up against Portugal five days later. FIFA later accepted that rules had been broken but, as the Telegraph reports, Morocco will face no disciplinary action. Meanwhile, defender Ragnar Sigurdsson needed a bandage to stop the bleeding after a blow to the back of the head in the 49th minute of Iceland’s game with Nigeria. He wasn’t substituted until 16 minutes later. Controversially the flow of blood from his head was not enough for medical staff to suspect a concussion and therefore haul him off the pitch immediately. Ben Purkiss, chairman of the Professional

Footballers’ Association (PFA) in England, suggested the new concussion rules needed to be more strictly enforced. He told the press: “You can have the best drafted, shiniest rule book on the table but if you don't apply it, what's the point? There's no point whatsoever. You can say you've looked into it and we've done this, that and the other. It's about how things are applied in practice. “Whenever you ask players how they are, their instant reaction is 'I'm fine' because they don't want to be accused of not going through a brick wall for the cause. That's why it's crucial the protocols are in place and the decision has to be taken out of the hands of both players and managers.” Earlier, players’ union FifPro slammed FIFA following the Moroccan team’s flouting of the rules. It said in a statement: “This is yet another alarming example of a player being put in harm's way. Amrabat returned to action too soon according to medical guidelines.

I was not surprised, but disappointed and very angry. With the new guidelines, we thought we had enough power, but it seems now that this is not the case.

"Four years on from the debacle of the last World Cup, where several players did not receive adequate care, football has not made sufficient progress in concussion management. Repeated calls to implement world-class safety standards have been overlooked.” As an organisation, FIFA maintains that concussion management is the ultimate responsibility of each nation’s medical team. No action has been taken against Morocco to date. Michel d’Hooghe, head of FIFA’s medical committee, seems more open to change, however. He told The Mail on Sunday: “When I saw what happened, I was not just surprised but disappointed and very angry. All the team doctors know very well what should happen, but Morocco’s behaviour was in defiance of our guidelines.’ "We thought that with these guidelines we had enough power, but it seems now that this is not the case. Perhaps we need to go one step further and impose sanctions if the guidelines are not followed. "I am convinced that the majority of team doctors take this very seriously, but now we face a new problem thanks to the Moroccan medical delegation." MORE NEWS

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company news sponsored feature

The 70th year of the NHS is a great opportunity to reflect and consider the professions that underpin services and support patients with their journey of recovery. The fantastic work of doctors and therapists in neurological rehabilitation is often recognised, however, the same cannot be said for nurses. At The Royal Buckinghamshire Hospital centre for specialist rehabilitation and nursing care, we understand that without nurses most rehabilitation programmes and the achievement of recognised goals and positive outcomes would not be possible.

Royal Bucks puts nursing at the heart of good rehab In 2017 we introduced the role of clinical nurse specialist and went through a rigorous recruitment process to find somebody that could bring the skills and experience to grow and develop the team. We successfully recruited Sarah Harris to the role in October. She has a wealth of experience and expertise in the field of spinal injury and acquired brain injury rehabilitation. Her role has been designed to provide overarching guidance, support and leadership to the nursing staff and to enable an interdisciplinary approach; pulling everything together - therapy, medical and nursing care – to ensure that the best possible recovery outcomes are reached and that patients have a positive experience during their stay. Since introducing this role we have seen a significant increase in interdisciplinary working and effective communication. This is reflected in feedback received from external professionals attending case conferences who are now experiencing a much more cohesive and robust delivery and review of interventions. We have also seen a reduction in re-admission to hospital for acute care as the nursing team feel confident and supported in safely managing more complex situations. This notion of investing within our nursing workforce is clearly demonstrating its benefits across the service for nurses, patients and their families. It also creates value for money against the ever-challenging financial constraints within healthcare.

Part of this role is looking after the patient pathway from admission to discharge, ensuring that every patient has a personalised and comprehensive plan for their rehabilitation and care. This does not stop when the patient is discharged - when they go home every aspect of safety and care has been considered with comprehensive transition plans agreed prior to discharge. Being treated at The Royal Buckinghamshire Hospital is often a life-changing experience for patients. They enter in a vulnerable and limited state, and leave having regained some of their independence. Through support and expertise, it’s people like Sarah who help make this happen; who help change lives. Sarah is a firm believer that rehabilitation does not begin and end in the therapy gym or hydrotherapy pool. Sarah completes training sessions with all staff on how to carry over what is being learnt in the gym to ensure this is translated on the ward so that function is maximised. She recently purchased a variety of activities for three bed-bound patients to ensure that they were stimulated and continuing with their therapy over the bank holiday weekend. Sarah attends therapy handover, timetabling sessions, MDTs, case conferences and nurses’ meetings to ensure that information sharing is seamless and that patients are getting continuity of care. Jackie Jones, director of operations, said: “Since Sarah joined the team, the confidence of the nursing team has soared, there has

never been any doubt that they have the required skills, it has just been a case of giving them the belief in their abilities. It is a pleasure to see the team grow and evolve. Sarah is a breath of fresh air and really does bring a lot of value to the service and, most importantly, to the patients we support.”

A nationally and internationally recognised centre for specialist rehabilitation and nursing care, The Royal Buckinghamshire Hospital has a rich history in supporting individuals with acquired brain injuries and spinal cord injuries. For referrals contact Ashley.mancey-johnson@affinitycaregroup.co.uk. See www.royalbucks.co.uk for more information.

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Study casts doubt on brain injury biomarkers

High-speed head impacts in sport may elevate blood biomarkers typically linked to traumatic brain injury even if there is no diagnosable concussion, a study shows. American footballers who sustained a single high-acceleration head impact, but were clinically asymptomatic, statistically had significant increases of serum levels of tau and ubiquitin C-terminal hydrolase L1 (UCH-L1), University of Michigan

researchers found. Meanwhile, athletes who played a whole football season without concussion had increased biomarkers of neuronal and axonal head injury. The results call into question whether using biomarkers to try to diagnose a clinical concussion is viable, researchers said. The study followed 16 high school American football players who wore helmet-based accelerometers that recorded head impact data during practices and games in the 2016 football season.

High-acceleration was defined as greater than 95g (g-force), in linear terms, with rotational acceleration set at greater than 3,760 radians per second. Participants underwent neurocognitive and blood testing, with serum levels of various biomarkers measured. Some 7,756 head impacts were recorded during the season; 11 (0.001 per cent) met the criteria of a high-acceleration head impact. Six athletes sustained one or more high-acceleration hits during the season.

Game on for Emilia

Gene therapy breakthrough

New hope has been raised for people paralysed via spinal cord injuries following a breakthrough in gene therapy. Scientists used the pioneering therapy to give rats, which were unable to use their limbs, the ability to reach, grasp and feed themselves once more. The rodents’ spinal cords had been bruised to mimic the typical injuries people suffer in car accidents or falls. Research leader Professor Elizabeth Bradbury said the rats quickly regained basic control of their limbs after being injected with the gene, with more precise movements taking a little longer. Scientists from the Institute of Psychiatry, Psychology and Neuroscience at King's College London carried out the research.

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The damaged spinal cord was injected with the gene that makes an enzyme called chondroitinase – which breaks down the scar tissue that seals the ends of damaged nerve fibres. In doing so, it allows nerves to grow, reconnecting the spinal cord and restoring muscle movement. Results published in the journal Brain showed the treatment worked in rats with recent injuries. But scientists are now repeating the experiment on animals with injuries up to a month old, with more scar tissue. They have built in a "gene switch" as a safeguard, so the enzyme is only active when the rats are given a common antibiotic in their drinking water. Remove the antibiotic and the gene switches off. Studies will be carried out on pet dogs that have been injured in accidents. If successful, trials in humans will follow.

Emilia Clarke, the dragon-rearing star of Game of Thrones, is setting up a brain injury charity. The British actor, who recently hit the big screen in Star Wars flick Solo, has reportedly put £30,000 of her own funds into the Anima Foundation. According to Companies House, the London and US-based organisation will seek to educate people “in all subjects relating to brain injuries and promoting and protecting the health of individuals who have experienced, or are at risk of experiencing, a brain injury”. Its holding page suggests particular focus on neuro-nursing, stating: “Being led through a personalised pathway of recovery can make all the difference. Nurses are so important; they are a critical resource and there just aren’t enough to go round. We are on our way towards launching a charity in the UK and the US to raise awareness and funds for specialist brain injury care. Our ambition is to increase the number of specialist nurses available to care for people and their families as they leave hospital to go back home.” Clarke potentially has personal experience of specialist nurses. She reportedly suffered a brain aneurysm several years ago, although she has never confirmed this story. NR Times has been promised the inside track on the charity once launched. We hope to bring you an update next issue.

Shortages put stroke unit on the move A specialist stroke and older people’s rehab unit in the North East of England is to be relocated due to staff shortages. The Cherryburn unit based in Newcastle’s Centre for Ageing and Vitality is expected to move across the city to the Freeman Hospital. Once here, finding staff cover for gaps in personnel will be easier, bosses say. Newcastle Upon Tyne Hospitals NHS Foundation Trust said: “Like many areas across the country our specialist medicine and older people’s services are finding it increasingly difficult to recruit staff with the right skills to care for a growing population of older people, and those with complex needs.” MORE NEWS

Masterclass In Neuro Technology

IN ASSOCIATION WI

10th – 11th October 2018 Holiday Inn, Winchester SO21 1HZ

Successful Integration of Neuro Rehabilitation Technology into Clinical Practice

The event will include:

Lead by experienced clinicians who will facilitate masterclasses with patients.

• Overcoming the challenges

A hands-on approach which will link clinical reasoning to optimise the use and potential benefits of neuro technology. This event is suitable for practitioners, providers, case managers and other professionals working in the field of neuro rehabilitation.

• Current research & development • Exploration of current technologies including FES, robotics, VR & sensor based devices • Clinical workshops IATIO N WI T H I N A SS O C

Contact: courses@hobbsrehabilitation.co.uk for an application form to register interest

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Solvents and smoke linked to MS Smokers who are also exposed to solvents at work face a heightened risk of MS, Swedish scientists say. A study, involving 2,042 people with MS and a non-MS control group of 2,947 people, examined participants’ exposure to organic solvents, paint products and varnish in the workplace. Respondents were also questioned about their smoking habits and tested for two genes linked to MS. Researchers concluded that smoking and solvent exposure made people more at risk of developing MS. “The mechanism linking both smoking and exposure to organic solvents to MS risk may involve lung inflammation with a proinflammatory profile,” they concluded.

Calls to scrap six month benefits rule The latest review of the UK’s Personal Independence Payment (PIP) system could help people with neurodegenerative diseases access vital funds more quickly. The PIP is designed to help disabled people in the UK meet the extra living and mobility costs of disability. As with other types of benefits, PIP claimants with terminal illnesses are eligible for the Special Rules for Terminal Illness (SRTI) application process. This gives them rapid access to disability benefits, without going through the standard application process. However, the SRTI requires a 'reasonable

expectation of death within six months' – excluding many people with an unpredictable terminal illness like motor neurone disease (MND) who may live for years after diagnosis, or face a sudden and rapid decline. While Scotland recently removed the ‘six months’ rule, it remains in place elsewhere in the UK, despite mounting pressure from national charity the MND Association, alongside other groups. Now, an independent review of PIP in Northern Ireland has been published and makes fourteen recommendations for the government to consider. Among them, is a call to remove the six months protocol. The MND Association backed the findings,

saying: “We want this to be changed to reflect the complex and unpredictable nature of MND despite being terminal in all cases. “A recent change in Scotland has seen the removal of any time-limit and instead requires a clinical judgement to determine if someone is terminally ill for the purpose of accessing benefits. The association has been campaigning for a similar change across the rest of the UK, including in Northern Ireland, and pays tribute to supporters and volunteers who have been taking action locally to campaign for a change. “We will continue to campaign for a benefits system that ensures people living with MND get swift access to the financial support they need in a way that is appropriate and sensitive to their circumstances.” MORE NEWS

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pathway profile Patients at the Wellington have access to the very latest rehab technologies

ensure that we are always delivering the very best of care. We are exceptionally proud that we have achieved CARF accreditation consistently over the last seven years, benchmarking ourselves against other rehabilitation units. This demonstration of clinical excellence makes it a first choice for patients no matter how severe or complex their condition.

Personalised, goal-driven rehab for injuries of all severity levels

The Wellington Hospital has the technology and experts on-hand to provide rehabilitation at the earliest opportunity…

Neurological rehabilitation can be a challenging and complex journey for patients. To effectively rehabilitate those who may have suffered a stroke, spinal cord injury or traumatic brain injury, it’s crucial that a patient not only has access to expert-led care and the latest in evidence-based practice, but that personalised plans are created which ensure patients can advance and rebuild their life after rehabilitation. At the Acute Neurological Rehabilitation Unit at The Wellington Hospital, London (part of the HCA Healthcare Group), we can care for patients from within the UK and overseas and deliver a rehabilitation programme to meet their needs no matter how serious or complex their condition. Here they undergo a comprehensive assessment, receive a personalised treatment programme and set goals. Goal orientated, expert led programmes The unit is the largest private neurorehabilitation unit in the UK and our intensive rehabilitation programmes are led by consultants who are experts in their field. We can care for patients who are in a critical state

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with the support of an intensive care unit and full diagnostic capabilities. Our consultants are supported by skilled and experienced therapy and nursing teams that include physiotherapy, neuropsychology, music therapy, occupational therapy and speech and language therapy. The patient, their family and the team work together to identify goals that are motivating and meaningful and will act as stepping stones towards a successful discharge and life beyond hospital. Specialist assistive technologies At the unit, patients can access a range of pioneering assistive technologies to support their rehabilitation programmes. This includes a Lokomat, an Indego Exoskeleton, a Functional Electrical stimulation (FES) Bike, an Armeo Spring and Bioness Hand Rehabilitation system for upper limb programmes. Outstanding clinical outcomes The unit retains an international reputation for clinical excellence. We use standardised outcome measures to track progress and to

Case study: Rebuild a life through rehabilitation After falling ill whilst on holiday, Sophie needed urgent medical attention. She was able to walk to the ambulance when it arrived – but that was the last time she would ever walk. A series of blood tests and scans revealed that she had suffered a cervical spinal cord stroke. Sophie was then flown to the Wellington Hospital, before being transferred to its acute Neurological Rehabilitation Unit. She had experienced an incomplete injury, where the spinal cord is only partially damaged, running from C6/7 to T8 of her spinal cord. At this level of injury, Sophie was expected to have minimal use of her arms and legs. Sophie underwent an intensive six month rehabilitation programme which included the use of the FES bike, Lokomat and hydrotherapy pool. Sophie is still at the beginning of a long journey but does now have the use of her arms and hands giving her the independence to now live at home. Sophie now returns to the rehabilitation unit twice a week and she feels positive that, with a strong mind and a positive outlook, she can achieve far more than might be expected.

Visit www.thewellingtonhospital.co.uk T: 020 7483 5348 or 020 7483 5363 F: 020 7483 5588 E: Rehabilitation.Wellington@hcahealthcare.co.uk

The Wellington Hospital, 27 Circus Road, St John’s Wood, London, NW8 6PD

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This will improve care and support provided to HD families over time The National Care Framework for HD is a living document, designed to evolve along with changes to health and social care systems, structures and personnel. Consultant psychiatrist and HD lead clinician for NHS Fife, Dr Michael Armanyous, said: “It is an extremely comprehensive and easy to use tool that I am confident will help to further improve care and support provided to HD families over time.” Nicky Connor, associate director of nursing with Fife Health and Social Care Partnership, said the region was fortunate to have a lead clinician for HD as well as HD specialists, youth workers and financial advisers, as part of a team to deliver the care and support required by patients and their families.

Scottish region pioneers Huntington’s framework Scotland is now home to the only localised care framework for Huntington’s Disease (HD) in the world, according to reports. The internationally-acclaimed Scottish National Care Framework for HD has been replicated on a local level, by NHS Fife. It aims to ensure those affected by the condition receive first rate care, information and support. John Eden, chief executive of the Scottish Huntington’s Association, said: “[We] owe an enormous debt of gratitude to everyone who participated in the development of the Fife framework. “This launch is a huge vote of confidence in their work. Together they have added to a momentum that will lead this project to success the length and breadth of Scotland and, hopefully, beyond.”

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The framework does not advocate a single pathway or one-size-fits-all approach. Instead, every person’s experience is considered unique and is therefore treated as such. It stipulates that individual care and support packages must be created in partnership with families. This requires four key elements: • Care coordination should be provided by a single named specialist who has a key role in assisting families to navigate their way through their HD journey. • Care should be provided by a clearly defined multi-disciplinary team consisting of core members whose roles are essential in managing health and social care needs. • Access is required to a wider and clearly mapped network of services where welldeveloped referral and liaison arrangements are in place. • Specialist staff play a central role in providing training and education to the wider support network.

“In launching the framework we hope to kick start further improvements to our services and lead the way for providers throughout Scotland to follow,” she said. The Fife Framework can be viewed within the Regional Frameworks section of the care. hdscotland.org site. HD can affect a person’s movement, thinking processes and mental health. The symptoms of the illness typically begin to develop between the ages of 30 and 50 and the condition is hereditary, meaning it can impact on families over generations. MORE NEWS

How the service works Discharge from hospital following injury or illness

Brain Injury Community Service

A child can be referred at any point following their injury or illness. For some children this may be some years after the initial event .

Supporting children and young people with acquired brain injury in the community

Clinical screening A clinical specialist from the Brain Injury Community Service will make contact with the child/family to complete a detailed telephone interview.

Visits and telephone calls Following the initial screening, our clinical specialist may visit the child and their family, either at home or in school. Contact will also be made with other professionals involved in the child’s care.

The Children’s Trust is the UK’s leading charity for children with brain injury. We work with children and young people aged 0-18 from across the UK with acquired brain injury, neurodisabilities and complex health needs delivering rehabilitation, education and community services through a highly skilled team.

Onward referral If the child has needs which require additional support, our clinical specialist will make the necessary onward referral into local community services, or our specialist multidisciplinary team.

Our Brain Injury Community Service provides goal-orientated rehabilitation delivered in the child’s environment. Delivered by specialists from a range of clinical backgrounds, we work with the child and their family focusing on the needs which result from an acquired brain injury. These may be social, emotional, cognitive, communicative and behavioural needs. Our ultimate goal is to maximise the child/young person’s participation in their everyday life We provide a range of support centred around the child or young person, including clinical screening, advice and onward referral completely free-ofcharge for children and young people with an acquired brain injury, including those with a concussion. Subject to funding we also offer community-based neurorehabilitation skills packages delivered by our multidisciplinary team. This service provides the initial support needed when a child is discharged from hospital to home and can also be accessed after an initial injury or illness which, in some cases, can be many years later. This may be because the effects of the injury may not be obvious for some time. Registered Charity No. 288018

Community-based neurorehabilitation skills packages Delivered by The Children’s Trust Brain Injury Community Service, skills packages include understanding acquired brain injury (ABI), developing learning skills, developing study skills, attention and concentration management and many more.

Additional support delivered by local community services The child’s needs will be met by services in their area.

Long-term Our long-term register provides systematic monitoring of a child’s needs at key stages.

Making a referral is simple and can be made by anybody involved in the child’s care. www.thechildrenstrust.org.uk/bics bics@thechildrenstrust.org.uk 01737 365 864

Gel could fix spinal injury breathing problems Lab tests have shown that a hydrogel could help repair damaged spinal nerves that control breathing, potentially paving the way for the development of a new patient treatment. One of the most severe outcomes of spinal cord injury is losing the ability to control breathing, with patients often requiring artificial ventilation for the rest of their lives. Researchers at US university Jefferson recently tested a hydrogel that releases a nerveprotecting agent at the site of injury, restoring independent breathing in rat models. "The hydrogel can deliver a neuron-stimulating agent that repairs a critical aspect of spinal cord damage, while avoiding systemic side effects of the agent," said co-senior researcher Angelo Lepore. "We looked specifically at the bundle of nerves that control breathing. Our preliminary work in animal models could lead to new treatments in the future for patients suffering from respiratory compromise, and may also apply to restoring other functions affected by the injury." Dr. Lepore and Yinghui Zhong, PhD, a collaborator from Drexel University, developed a gel that binds to the neurostimulating agent BDNF (brain-derived neurotrophic factor), and releases this nerve-repair protein at the site of injury. The gel releases a specific dose, over a controlled period of time, in a particular area and can be implanted in a safe manner. It is also biocompatible, meaning the body does not mount an immune response to it. BDNF is a known nerve-growth factor, and has been explored in clinical trials for motor neurone disease patients. But when it circulates systemically through the blood and entire nervous system, it can cause side effects such as muscle spasms and chronic pain, characterised by increased sensitivity to pain or the feeling of pain from stimuli that normally would not hurt. "Injecting the BDNF-infused gel only at the site of injury, we can bypass these side effects," say researchers. Although many types of nerves will be affected by spinal cord injury, the researchers looked specifically at the bundle

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called the phrenic nerve, which specifically controls the diaphragm - which in turn controls the rhythmic inflation of the lungs. The researchers saw a 60-70 per cent improvement in breathing control as measured by diaphragm-muscle contraction in rats that received the BDNF gel after spinal cord injury. Looking at the changes at the cellular level, the researchers observed two ways the BDNF gel protected or helped maintain the brain-to-spine-to-diaphragm connection. The long phrenic nerves, with one end of the cell sitting at the spinal cord and the other end touching, or innervating, the diaphragm muscle, would sometimes release their connection to the muscle when the other end of the nerve was damaged at the spinal column. Dr Lepore and colleagues showed that the gel helped nerves reconnect, or protected these nerves from releasing in response to the damage, in effect, helping to retain the spine-todiaphragm connection. Another set of nerves travels from the brain to the spinal column to help set and maintain the rhythmic control of inhalation. Those nerves can also be damaged during injury. Dr Lepore and colleagues showed that the BDNF gel helped regrow the nerves that connected the rhythm-control centre of the brain with the spine and ultimately the diaphragm muscle. "Although there are yet other types of damage that can occur during spinal cord injury, it's encouraging to see this gel improve two extremely important mechanisms by which breathing control is lost," said Dr Lepore. The researchers plan to continue the work by exploring the ideal timing and dosing for applying the biogel. Specifically, they would assess whether it could work in instances where treatment isn't immediately available after injury. They are also interested in exploring whether the approach could protect or regrow other types of nerves, and help patients retain more functionality. The work was published in the Journal for Neuroscience.

event sponsored feature

Get the inside track on new developments in brain injury care

The latest innovations in managing challenging behaviour after brain injury are the focus of a major UK event later this year…

Neurobehavioural Disability after Acquired Brain Injury: Recent Innovations in Clinical Practice and Delivery is the third annual conference hosted by Elysium Neurological in partnership with Swansea University. The event, in November, brings together leading experts who will share insights on the latest clinical innovations and cuttingedge developments in the management of challenging behaviour following brain injury. Among them will be Dr Jessica Fish - clinical psychologist at the Oliver Zangwill Centre for Neuropsychological Rehabilitation – and Dr Richard Maddicks, consultant clinical neuropsychologist at Psychology Chartered. Also speaking at the event will be Joanna Humphreys and Lucie Phillips, music therapists at Nordoff Robbins, and Professor Nick Alderman, clinical director of neurobehavioural rehabilitation services at Elysium Neurological. Professor Alderman, who is also an honorary professor at Swansea University’s Department of Psychology, says: “Challenging behaviours arising from neurobehavioural disability have been recognised as posing a greater long term impediment to community integration than

physical disabilities. Therefore, it is essential that appropriate rehabilitative intervention is delivered to reduce the financial and social cost to individuals, their families, and society.” Dr Claire Williams, senior lecturer in the Department of Psychology at Swansea University, adds: “We are absolutely delighted to be holding a third conference in our series of events concerning acquired brain injury. Our varied, dynamic and practical conference programme will support a wide range of rehabilitative practices and will be of interest to all those interested and/or involved in the care of individuals with an acquired brain injury, including case managers, commissioners, rehabilitation and healthcare professionals, clinicians, academics and the legal fraternity.” The event takes place on the 26 November at the Swansea Marriott Hotel. Meanwhile, Elysium is also planning a stakeholder event at its Badby Park specialist care centre in Northamptonshire. This event, on 26 September (10am – 1pm), provides an opportunity for healthcare professionals to discuss the many challenges faced by those affected by Huntington’s disease (HD).

Dr Hugh Rickards, consultant in neuropsychiatry at Birmingham and Solihull Mental Health Foundation Trust, will deliver the keynote lecture at the event focussing on developments within clinical research around HD. Further details can be found on www.elysiumhealthcare.co.uk. Elysium Neurological is the neuro division of Elysium Healthcare, one of the UK’s fastest growing private healthcare providers. Having acquired a number of neurological rehabilitation and complex care services across the UK in the last 18 months, it is now one of the leading providers of neuro care in the UK. Collaborative events such as its upcoming conferences form an important part of its development. The company believes sharing ideas among neurorehab professionals, educators, legal experts and charities is vital in continuing to drive the field forward for the good of patients and their families. Its busy programme of stakeholder and continuing professional development events incudes regular ‘Sharing Best Practice’ and ‘Service User’ conferences across the country. Elysium also hosts brain injury forum gatherings, featuring external speakers, and is heavily involved in wider initiatives such as Huntington’s Disease Awareness Day and Brain Injury Awareness Week.

For full details of the brain injury conference in Swansea on 26 November visit: https://abiswan18.eventbrite.com . Please send enquiries to claire.williams@swansea.ac.uk. www.elysiumhealthcare.co.uk.

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STUDY GUIDE: hypopituitarism 20

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Hypopituitarism is a very common, and often misdiagnosed, post-brain injury condition. Here Professor Mike Barnes, of the National Neurological Rehabilitation Chambers, provides an overview for NR Times. Hypopituitarism means the pituitary gland is not functioning properly. The pituitary gland is the "master gland" that controls all the other hormonal glands within the body. It is a small gland on a stalk sitting in the middle of the brain. Unfortunately, its position, anatomy and blood supply make it vulnerable to traumatic brain injury. The gland is split into two parts â&#x20AC;&#x201C; the anterior pituitary and the posterior pituitary. The posterior pituitary produces a hormone called AVP (arginine vasopressin) which controls the water balance in the body. If this function goes wrong it is called diabetes insipidus (which should not be confused with diabetes mellitus or "sugar" diabetes. It is an entirely different disorder). Shortage of this hormone means that the person will produce large volumes of dilute urine â&#x20AC;&#x201C; often over three litres per day. This obviously leads to thirst and dehydration. It is very common in the immediate, post-injury phase and it is often only seen in the acute hospital. It is relatively straightforward to diagnose and easily treated â&#x20AC;&#x201C; by simply drinking more water. However, if the problem is really severe then there are medications that can correct the hormonal deficit. In the longer term, it is the hormones in the anterior pituitary gland that have such a major impact on daily life. The anterior pituitary gland produces hormones that control sexual function, growth, steroid production and thyroid production. All these deficiencies have their own particular pattern of deficits which are described further in this article. Can we predict who gets hypopituitarism? The answer is not really. It tends to occur in younger men but there again, brain injury also occurs in younger men. The type of brain injury is no real help although more severe injury

The risk is surprisingly high... The condition can occur late after injury, while symptoms can be vague

does lead to a higher risk of hypopituitarism. A fracture of the basal part of the skull also leads to a higher risk. A warning sign is diabetes insipidus occurring in the acute phase which gives rise to a higher risk of other pituitary problems occurring later after the injury. The overall risk of hypopituitarism is surprisingly high and it is said that somewhere between 30-50 per cent of people after a severe brain injury will develop some hypopituitary symptoms at some stage. It is also important to note that it can occur late after the injury, although 75 per cent of people who get the problem have developed it within the first year. However, this obviously means that 25 per cent will develop the problem after one year which in turn means that the link between the symptoms and the brain injury is sometimes not made. So what are the symptoms? The problem is that the symptoms of hypopituitarism can be rather vague and also commonly occur after brain injury even in those who do not have pituitary problems. Overall, the commonest difficulty is tiredness. As is well understood, tiredness and easy fatigability are also very common after brain injury. It is important to have a high index of suspicion and if someone has particular problems with

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fatigue after brain injury then they should certainly be checked for hypopituitarism. To some extent the exact symptoms depend on which hormones are affected. The most commonly affected is growth hormone. As the name implies growth hormone is responsible for growth in children and lack of the hormone will often produce growth failure. However, lack of the hormone can also lead to problems in adults. These problems largely focus on decreased energy with tiredness, decrease in muscle mass and an increase in fat mass and also depression. Once again, all these are common difficulties after brain injury. A deficit of the sexual hormones (FSH and LH) will cause loss of libido and, in women, menstrual cycle problems and, for men, erectile problems. There can also be a loss of fertility in both sexes. Once again, the situation is compounded by depresson and a lack of energy. These same symptoms also occur with a deficit of ACTH which controls steroid production. Fatigue, weight loss, anorexia (poor appetite) and metabolic problems are common. A low thyroid from a lack of the thyroid stimulating hormone (TSH) in hypopituitarism can also cause tiredness as well as coldness, constipation, hair loss, dry skin, hoarse voice and cognitive "slowness", weight gain and depression. Thus, whilst there are some specific symptoms, most of the problems of hypopituitarism are rather nonspecific and common in brain injury in any case. This comes back to the point that a doctor, case manager or other health professional needs to have a high index of suspicion. There is a case to be made that everyone after brain injury, certainly at the severe end of the spectrum, should undergo pituitary function testing. The importance of testing the pituitary is that if a hormonal deficit can be determined then it is easily corrected by hormone replacement. It is clearly vital to detect and treat the treatable. How do we test for pituitary deficit? The main point here is that a simple blood test to check the level of hormones in the blood is inadequate. Sometimes low hormones in the blood stream can be a pointer but often the hormone levels are in the normal range but are unable to respond to the necessary peak in

Further reading Norwood KW, Deboer MD, Gurka MJ, et al. Traumatic brain injury in children and adolescents: surveillance for pituitary dysfunction. Clin Pediatr (Phila) 2010; 49(11): 1044-9

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concentration at times of stress. Thus to diagnose hypopituitarism properly, the gland has to be put under stress and the hormones measured before and after the stressor to see if the gland is able to respond. There are a number of provocative tests that can be given. One, for example, is to give the individual a small dose of insulin which lowers the blood sugar and, as a result, the pituitary hormones should rise in response. There are other tests available. However, the basic rule is that if there is any suspicion of hypopituitarism then the individual must be referred to the local endocrinology department. The testing is simple but does involve the person coming into a day unit to have blood taken over a period of a few hours before and after the provocative stressor. This is marginally inconvenient but nevertheless is the only proper way to diagnose the condition. Once a hormone deficit is determined then it is straightforward to prescribe replacement therapy, such as a growth hormone, thyroxine or oral steroids. This treatment can produce a complete improvement in those particular symptoms. This is clearly a great result for those who may have a very low quality of life as a result of tiredness or depression. Sometimes there is only a partial improvement after correcting the hormonal deficit and this probably means that whilst the low pituitary hormone had some role in the symptoms, the brain injury itself also played a part in the symptomatology. However, any improvement is clearly better than no improvement. In summary, hypopituitarism after brain injury, particularly severe injury, is very common. It can produce a range of symptoms that are rather nonspecific and common in any case in the context of brain injury. There needs to be a high index of suspicion of hypopituitarism and the individual must be referred to an endocrinology department to undergo proper testing. The results and treatment are often very satisfactory and can produce significant benefits and improved quality of life. Mike Barnes is a consultant neurologist, rehab physicist and managing partner of the National Neurological Rehabilitation Chambers (www.nnrc.org.uk).

Blair JC. Prevalence, natural history and consequences of posttraumatic hypopituitarism: a case for endocrine surveillance. Br J Neurosurg 2010; 24(1): 10-7 Quinn M, Agha A. Post-traumatic hypopituitarism â&#x20AC;&#x201C; who should be screened,

when, and how? Front Endocrinol (Lausanne) 2018; Feb 2;9:8. doi: 10.3389/ fendo.2018.00008. eCollection 2018 Zaben M, El Ghoul W, Belli A. Post-traumatic head injury pituitary dysfunction. Disabil Rehabil 2013; 35(6): 522-5

ACCREDITED TRAINING PROGRAMME

UKABIF’s 10th Annual Conference How to Manage Successful Non Court Resolution To celebrate our 20th Anniversary Wednesday 13th April 2016 Field Fisher, Riverbank House, 2 Swan Lane, London EC4R 3TT Monday 5th November 2018 Royal Society for Medicine, London

Chair

Chair: Dr Andrew UKABIF Chair,Chambers Clinical Manager, OliverTrustee Zangwill Centre for Bill Braithwaite, QC,Bateman, Director of Exchange and UKABIF Neuropsychological Rehabilitation

Introductory session from a brain injury survivor Speakers

The Future of Neurorehabilitation Litigation Management

The challenges of returning to work after brain injury

Col Alan Mistlin, Chair CRG Rehabilitation and Disability Yasmin Ameer, Barr Ellison Solicitors

Emma Satyamurti, Partner, Leigh Day

Acute rehabilitation in a Major Trauma Centre: the

What’s wrong with Rehabilitation Prescription andlitigation? Models of hyperacute rehabilitation. Hannah Farrell,Lord ClinicalJustice SpecialistWard Sir Alan Ward, formerly

Recognising and responding to the criminalisation of childhood traumatic brain injury’ educational disengagement / exclusion, and discriminatory

Physiotherapist-Neuro-Traumatology, University Hospitals

criminal justice processes Professor Nathan Hughes,

Birmingham NHS Foundation Trust and member of the

Professorial Research Fellow Department of Sociological

Non court resolution and funding interim rehabilitation Studies, University of Sheffield Clinical Reference Group for Major Trauma

David Fisher, Axa Insurance and Andrew Underwood, Keoghs Solicitors The All Party Parliamentary Group for Acquired

Champagne Reception and Awards

A lively exhibition from companies and charities will run Brain Injury Update & Q&A Chris Bryant, MP for the How to choose the right rehabilitation services for your client at the alongside this event and there are also opportunities for Rhondda Valley and Chair of the All Party Parliamentary right cost poster presentations – please contact us for details. Group for Acquired Brain Injury

Heather Batey, Reach Personal Injury

Findings from a brain injury linkworker service in a women’s prison: Understanding the interplay Rehabilitation in practice – time for between acquired brain injury and domestic violence

UKABIF Awards Poster Presentations Exhibition and Networking

David A. Johnson, Consultant Clinical Neuropsychologist Dr R McNulty, Consultant Clinical Psychologist, Clinical

supervisor for Brain Injury Link Workers, The Disabilities

Event kindly sponsored by Leigh Day, Sintons Law, Elysium Healthcare, Irwin Mitchell and Cygnet Healthcare.

Foundation How to Trust maximize the chances of getting a patient home

Prof Mike Barnes Early bird rates until 31/7/2018 Jill Greenfield, Field FisherNon Members £225 Members £170

NHS £95 Please see www.ukabif.org.uk/events/ukabifs-10th-annual-conference-2018/ £195 £165 For further details and to book online PLEASE NOTE THIS PROGRAMME MAY BE SUBJECT TO CHANGE

APIL Training – from Accreditation Accreditation APIL andPending the RCP pending

www.ukabif.org.uk

the art of staying client centred Most brain injury case managers strive to remain client centred - but several conflicts in the medico-legal setting can threaten this approach. Here Ella Cornforth explains how to navigate beyond them to keep clients at the heart of everything.

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f case managers diversified into producing cars, they would be hand crafted in the hue of client choice. This is because of the widely accepted guiding principle that we as rehabilitation professionals and case managers are client centred in our work. Working in the medico-legal setting can be a key factor in enabling the case manager to be client centred. I recall how excited I was by the scope of the role as a new brain injury case manager. The opportunity to be effective, creative and flexible in client work was a welcome change from the restraints of statutory eligibility criteria and limited service provision that characterised my previous role. However, 17 years later, it is interesting to consider the potential challenges and conflicts for the client centred case manager when working with brain injured clients in this context. The principle of personal injury law is to return an injured party, in so far as possible, to the position they would have been in, but for the injury. To that end, brain injury case managers are often instructed by the claimant’s lawyer to set up and manage a support package, or co-ordinate an interdisciplinary rehabilitation team. Our instructions and role vary, but our clients are often significantly cognitively impaired, have various neurobehavioral difficulties and may have some neurophysical impairments. In the medico-legal context, it is very helpfully established that the practitioner case manager’s duty is to the client. This was set out in a Court of Appeal ruling (Wright V Sullivan, 2005), with Lord Justice Brooke stating that the relationship between the case manager and the claimant had to be therapeutic. Also, the case manager should owe his duties to the patient alone. He must win the patient's trust and, if possible, his co-operation. While it may be in the patient’s interest that he should receive a flow of suggestions from any other experts who had been instructed in the case, the case manager must ultimately make decisions in the best interests of the patient and not be beholden to different masters. Clearly our duty, therefore, is to be client centred. In practice, however, even the most dutifully client centred case managers can face various conflicts and pressures.

Conflict one: Timescales The first principles of case management are to establish and maintain a positive working relationship with your client. Some clients and their families may throw the door open, delighted to have someone to help them get their show back on the road. However, you may find that with other clients, getting past the front door is a major achievement in itself. Your client may have reduced insight into their injury and limited motivation to explore sources of support or rehabilitation. They may have neuropsychological or psychiatric issues that present barriers to engagement. They may have a very limited ability to understand the purpose of litigation or accept the need for a case manager. On occasions such as these, the case manager is required to put all other issues to one side and go back to the basics of finding some common ground to engage the client. I have used various methods for this, taking cues from anything in the house, from talking about football, taking dogs for walks or in-depth discussions on the merits of various albums. If you can engage the client in discussion, you can work on developing rapport. Rapport enables you to listen to what’s going on in their life, what’s important to them and what is it that they would like to change or achieve. This process can take a long time to get to a place where your client trusts that you ‘get them’ and are really listening to what life is like for them, without judgement. Once you have established that you are working in partnership, only then can you begin the process of trying to move forward to where they want to be. The establishment of a trusting partnership is a vital part of the client centred approach. All of which is fine, as long as you have an experienced, patient-instructing lawyer that understands the nature of working with your brain injured client and is prepared to accept your identified timescales. Lawyers fight hard to gain interim payments to fund case management, care and rehabilitation. Getting these frameworks in place in a timely manner and collecting the evidence to demonstrate an established need for the purposes of the case, may be their priorities according to their case strategy. Some case managers may find themselves working with lawyers (either on

the claimant or defendant side) who don’t fully understand the client’s brain injury and barriers to engagement. There may be pressure for speedy outcomes and the case manager may feel required to progress apace. The case manager here faces a conflict and the only client centred solution is to stand firm and explain the rationale. In order to ultimately achieve anything, the case manager has to persevere with the challenging process of building up a trusting partnership at the client’s pace, and not at the lawyer's. Although I refer here to the initial process of building up the relationship, the same principle applies to maintaining it. You establish your working relationship at your client’s pace, and then you maintain it by moving two steps forward, one back, (or even sideways) then forward again, with the case manager gently pushing the dynamic to achieve jointly agreed goals. Good documentation is crucial in evidencing the input hours involved in supporting clients to achieve their goals and will ultimately be very helpful to the experts. It must also be said that it is essential for the brain injury case manager to have suitable skills and experience to facilitate and maintain engagement. Another timescale issue is that of medicolegal expert assessments. Timescales for expert reports are determined by the courts, and the constraints of busy experts’ diaries, rather than clients. This can be a problem for clients who are trying to engage in a structured programme of support/rehabilitation that periodically is interrupted to accommodate lengthy expert assessments, sometimes at home, sometimes at clinics in different parts of the country. Visits often appear to occur in phases when several assessments happen in a relatively short time. Clients may not always understand the relevance of the assessment and require persuasion to attend, with the case manager often asked to accompany them. The appointments themselves can be illuminating for clients and their families, but on occasion can also be very distressing and trigger unhelpful changes in behaviour or negatively impact fatigue and engagement. This necessary part of the process of litigation should be dealt with as sensitively and practically as possible, and often requires

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significant support from the case manager. Client centred case managers must advocate firmly for their client, be the voice of reason and consistently seek to work with lawyers to make expert assessment schedules as painless and non-disruptive as possible for the client. Conflict two: Goals and opinions In terms of defining goals, everyone has an opinion. The client may feel strongly about what support they do or don’t require, what activity will benefit them and what they actually want to achieve. There are also opinions expressed by the family and everyone else involved in their care or rehabilitation. Finally, there is the medico-legal expert opinion. On Case Manager Cloud Nine, all opinions of what the client needs happily coincide with that which they identify themselves. However, back on Earth, reality dictates that more often than not, opinions are divided. The expert is a key person in litigation and their opinion evidence is essential in the acquisition of interim funds and eventual damages. Experts make recommendations about the client’s long term needs for the purposes of putting together a schedule of damages, ultimately for the court’s consideration. Their support of the existing input at the time of assessment is important to the case and ongoing funding. There is therefore some pressure on the case manager to implement services along the line of their recommendations. However, what the experts recommend may be quite some distance from what the client actually wants to do. Often the case manager also believes the course of action recommended by the expert would be beneficial to the client, and may have been trying to engage the client in exploring this option for some time. Capacity issues are outside the scope of this article but addressing client capacity and best interests is very relevant to the ongoing work of the case manager. Common scenarios are where a medical expert reports that the client requires intervention, such as residential rehabilitation, which is rejected outright by the client, or a care expert recommends a level of support that is more than the client is prepared to accept or can tolerate at that time. Another difficulty can occur when the expert

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opinion sets out the timescales in which they expect to see specific outcomes, which may not always coincide with the timescale the client is working to. The case manager may feel conflicted when faced with expert expectations and recommendations which are rejected by the client; a dilemma for the case manager who is trying to keep the client at the centre of their practice. The case manager may agree with the expert opinion but are unable to progress it because the client rejects it. They know that support from the expert is important to their ongoing input and possibly their continued funding. They may also be painfully aware of court cases where case managers have publicly come under criticism for not following the recommendations of experts. In working with the client on these issues, the case manager has to manage client engagement, welfare, capacity, risk issues and family needs in negotiating a realistic way forward that is acceptable to the client and in their best interests. The way forward frequently starts off looking like one path, changes over time, and is not always as mapped out by the expert. Experienced case managers understand the medico-legal context and also the function of the expert, whose duty is to the court. The case manager may also find it reassuring to remember that the opinions of experts are often hotly contested by opposing experts on the same case. Fundamentally, the case manager deals with this pressure by remembering that their own duty is to the client. When an expert or treating professional recommends a course of action that the client is unwilling to engage in, the case manager should present options to the client, explore and encourage potential ways forward, and address capacity and risk issues. Their role is to try to enable (via rehabilitation or support) the client to pursue their goals as far as is possible within the boundaries of funds, safeguarding and the law. The golden rule is to document what you have done, including barriers to pursuing various recommended options, and the expert can review the evidence available to them. Conflict three: Evidence and relationships As discussed, a positive relationship between the client and the case manager is essential for client centred practice. However, a further

challenge created by the medico-legal setting is the disclosure of evidence whereby case management records are open to scrutiny by legal teams and experts, and potentially the client or their litigation friend (often a family member). Although intrinsic to the medico-legal process, it can cause difficulties for the case manager. Case management documentation often includes analysis of potentially contentious issues, and may refer to difficult family dynamics or other sensitive issues that are relevant to intervention. Disclosure of this information can affect the quality of the relationship between case manager and client or their family. You may feel conflicted by the knowledge that revealing tricky issues may have a substantial impact on your relationship and be faced with the dilemma of what to record. Another issue caused by disclosure is that the client who is cognisant of the fact that notes are disclosed may choose not to share issues with you, which may also hinder a meaningful relationship. It is relevant to note that your role is ‘Witness of Fact’. It’s helpful for the court and experts to know the situation on the ground, however difficult for the client or family to read, in order to make accurate assessments and recommendations to meet long term needs. It’s essential to work closely with the lawyer to address this issue and deal with disclosed information as sensitively as possible, and with reference to the client’s best interests. Case managers need to be prepared for this situation, and how to deal with it through supervision. Many lawyers offer excellent training on recording and disclosure of evidence. In summary, although the medico-legal context provides the opportunity to work in a client centred way, case managers also have various issues to navigate in order to remain truly client centred. It is important that we hold on to the fact that our duty is to the client, if faced with conflicts or challenges, and seek supervision in dealing with them. Ella Cornforth is a brain injury case manager, care expert, occupational therapist and regional manager Scotland / expert witness service lead at JS Parker. She is also a member of BABICM. Contact her on ellacornforth@jspsc.co.uk.

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.

Setting standards for neurorehabilitation Developing focused training programmes Organising collaborative research

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

What we do: • Raise the profile of independent providers within UK neurorehabilitation. • Provide a collective voice for members in the media and to inform policy. • Make recommendations to industry. • Run a recognised training programme for rehabilitation assistants. • Carry out research into the collective results of our work. • Ensure members adhere to a set of recognised standards.

www.trurehab.com | enquiries@trurehab.com | 01942 707000 |

Community Outreach Support Pathway Offering an opportunity to provide continuing support for service users in their own homes, promoting community integration and independence.

member of

www.in-pa.org.uk

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TRU's outreach service ensures the provision of specialist ABI Rehabilitation support for those who have progressed back into community living. We offer independent living accommodation both within a residential unit and also in the local community, which has six months maximum stay before progressing further into individually owned or rented properties. This service is complemented by offering specialised support for individuals living within a 50 mile radius of TRU. Our trained community team is available to support Case Managers, Social Workers and funders with initial transition to community re-integration whilst an external support network is identified, trained and established. NRtimes

insight

Constructing brighter futures The way in which specialist care homes for people with complex needs are designed and built can have a huge impact on the lives of their eventual residents. Here David Sturrock, development director of Exemplar Health Care, explains his approach to creating living spaces that optimise rehab outcomes. Building homes for people with complex needs requires consideration at every juncture to ensure that the environment is suitable for each stage of an individualâ&#x20AC;&#x2122;s care. This goes for people with degenerative conditions such as dementia and Huntingtonâ&#x20AC;&#x2122;s Disease, as well as those suffering a rapid decline in health, perhaps through brain injury or stroke. At the preliminary design stages, the Equality Act is a piece of legislation at the forefront of our considerations in terms of making reasonable adjustments to the living spaces for our service users. In addition to the Equality Act, the Care Quality Commission's regulations are also imperative to ensuring we deliver care that is not just satisfactory but outstanding. Regulation 10, 'Dignity and Respect' includes the provision of privacy for when service users need and want it, alongside giving them support to allow them to be autonomous, independent and involved in their local community. This regulation is an area weâ&#x20AC;&#x2122;ve focused significant efforts upon, across both our existing and new care homes. As such, alongside providing suitable personal care facilities for our service users, we have increasingly developed spaces such as The Hub. This is a space within a selection of our homes that charities and community groups can hire for free. A space of this nature dovetails Regulation 10 in so much as it gives our service users an opportunity to be more involved with the local community, yet there are also the safeguarding considerations which are involved in accommodating groups of people that have a level of access to our service users. As well as having vital spaces to integrate community groups into our home settings, we

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do, of course, have several rooms to support the rehabilitation of our service users. We have spaces where a variety of entertainment takes place, as arranged by our care staff, and designated sensory rooms which are adorned with special lighting, have music provision and objects to facilitate recovery. Alongside provision that you would expect, such as sensory and entertainment rooms, our aim to make every day better than the last for our service users has led to us utilising existing spaces in care homes in new ways. These were ways in which we had never anticipated when we first built or acquired the building, and have the required support and understanding at all levels of the business to make it possible.

At Quarryfields in Doncaster, a pop-up shop has been developed for service users with learning disabilities to gain volunteering opportunities. Service users are involved in all elements of the shop, from handling finances under supervision to meeting coffee suppliers and making the uniforms. Elsewhere, following feedback a service user provided to his home team, he was accommodated with a new room with the relevant facilities and processes to enable his son to stay overnight. In both examples above, the ability for change empowered not just the service users but the wider organisation to highlight how our physical buildings can be remodelled to provide facilities that not just let our service users survive but thrive. In addition to our traditional care home

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settings, we have developed a service called OneCare which provides accommodation for service users that allows them to have a greater sense of independence. The development of this service has led to an acquisition of existing properties and the development of new buildings on or near land we already own. OneCare services are unique to the service user’s needs, so each of the flats and homes are developed separately to cater for individual requirements. Examples include a home developed for Simon (name changed to protect his identity), a sufferer of autism who has severe sensory triggers and requires a home which has no skirting boards, radiators or wallpaper. Alongside reducing triggering textures, his flat has been developed so that there is a living space upstairs for when he is suffering from intense anxiety as well as the facility for care workers to stop access to the kitchen area for his own safety. While the space and its facilities are of significant importance, especially in relation to Simon’s triggers, it is the hard work of staff and their role in supporting Simon’s family in the process of transitioning his care to an Exemplar home which is key to his quality of life. Without the understanding and desire from the team to not only cater to his needs but also

Case study: sensory room is life changing for Ingrid

to allow him the opportunity to develop independence through cooking for himself and keeping him safe, the wider structure and technology would not suffice. It is important for us to remember the development role when considering how care provision is being developed for people with complex needs - it is the right environment and technology combined with the relevant specialist care which can make a difference to service users’ lives.

David Sturrock has worked across the property sector for over 16 years and is overseeing the current expansion of Exemplar’s property portfolio. Guided by the 2010 Equality Act and Building Control, he works to the relevant regulations to develop homes suited to the service users Exemplar cares for. These include adults with complex needs arising from neurodisability, brain injury and stroke, enduring mental ill-health, autism, learning disability and early-onset dementia. The firm has 26 homes across Yorkshire, the Midlands and the North West.

For several months, Ingrid had been suffering from intense headaches which continued for days without a break. When Ingrid became unable to carry out her day-to-day tasks she was rushed to A&E by her husband and scans carried out in hospital highlighted an aneurism on the brain. Unfortunately, the aneurism burst before surgery could be carried out and due to its size and impact, Ingrid suffered severe stroke type symptoms, which significantly changed her life. When Ingrid was admitted to an Exemplar home she was immobile, suffered with poor speech, severe short-term memory loss and very poor cognition and coordination. The experienced staff in charge of supporting Ingrid worked with family, friends and community therapists to develop a care plan to increase her functional abilities. The sensory room at the home encouraged Ingrid and paved the way for her recovery in developing her senses using special lighting, music and objects. Due to her short-term memory loss, Ingrid had initially struggled to come to terms with physio and cognitive therapies. Staff recognised this and worked on a regime of short periods of regular therapy and slowly she blossomed. As time progressed, Ingrid began reaching her goals. She regained movement, speech and most importantly, her independence. Just 18 months after arriving at Exemplar, Ingrid was able to go home to her beloved family – fully mobile. Almost back to her old self, Ingrid is now completely independent and does not require any further care packages to support her recovery.

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Almost a century after it was invented as an epileptic seizure cure, the ketogenic diet is on the rise again, in the face of failing drugs and fresh evidence linking it to other conditions including brain injury. Andrew Mernin reports.

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k 'Revolutionary' diets come and go as fleetingly as the memoirs of the celebrities who endorse them. But one has outlived them all and could be set for a renaissance in neurological healthcare. Long before wellbeing gurus told us about the ‘caveman’ (eat as much meat as you can) or the (I will only eat) ‘cabbage soup’, the ketogenic diet was born. Its basic principle was to ramp up proportional fat intake against a combination of protein and carbs. It was developed in the 1920s as an improvement on fasting as a treatment for epilepsy. After prevailing in the 30s and 40s, however, the dawn of anticonvulsant drugs pushed it into the shadows. And here it largely stayed until Meryl Streep and Hollywood producer Jim Abrahams got together to make the movie First Do No Harm, in 1997. Abrahams’ son had severe epilepsy that had been controlled by the ketogenic diet. Young Charlie was one of the many epileptic children for whom drugs did not work, where ketogenic diet therapy (KDT) did. The movie shows lead character Robbie overcoming seizures and the horrific side-effects of medication simply through a change in diet. Suddenly the world wanted to know more about this high fat, low carb diet. Campaigns followed and interest grew among parents, but 21 years later, it’s still being underutilised, especially here in the UK, says expert Sue Wood. This could change, however, with renewed interest in the diet and scope to extend its reach into brain injury care and general neurological health.

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Wood says: “There has always been around 30 per cent of individuals with epilepsy who don’t respond adequately or appropriately to anticonvulsive medication, or whose lives are blighted by its side effects. “But when the drugs took over, experience and skills around the ketogenic diet declined. It’s very difficult to bring something back up to widespread usage when experience and skills disappear. In the UK, we have ketogenic therapy being delivered in all 39 of our main paediatric hospitals. But often people don’t get access to it until much further down the line.” Wood is a specialist ketogenic dietitian at Matthew’s Friends, a charity focused on medical KDT which works alongside NHS KDT teams and offers information and support for those on a medically supervised therapy. It also runs its own KDT clinic and training courses for medical professionals interested in KDT. At the heart of KDT is a reduction of carbohydrates. This lowers the availability of glucose and the stimulus for insulin secretion – which, in turn, increases the rate of fatty acid oxidation in the liver and the release of

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Often it deals with brain fog and drugginess... It's not just about seizures

ketones into circulation. Brain tissue rapidly responds, using ketones as the primary fuel to drive energy metabolism. As with many areas of brain science, the exact link between the ketogenic diet and its anticonvulsant effect isn’t definitively understood. However, it is widely believed that the diet boosts brain energy reserves and stabilises neuronal tissue. It also helps to balance neurotransmitters and various compounds involved in exciting and inhibiting electrical activity within brain tissue. NICE guidelines recommend that the ketogenic diet is considered for children and young people with epilepsy whose seizures have not responded to “appropriate” anti-epilepsy drugs.

This is backed up by the results of a randomised trial in 2008 involving 145 children aged two to 16. Half were assigned to the diet, with the others put into a control group. Almost 40 per cent of those given the diet saw at least a 50 per cent reduction in seizures. Five children had a 90 per cent reduction. Wood says: “A child is referred to specialist services, whether in a hospital or to ourselves at the charity. The specialist ketogenics team is run by a neurologist, a dietitian and maybe a specialist nurse. It only takes around three months of appropriately designed treatment to explore whether it will make a difference. Most people who reach KDT have been on many, many medications, none of which have produced the desired effect. “Roughly a minimum of about 40 per cent are going to gain at least a 50 per cent reduction in seizures. This is a similar success rate to trying new anticonvulsive medication. But we do know that if you fail one drug, then a second and a third one, the next one has a much lower chance of working. The people who reach KDT have often failed several medications, so you have a very resistant group already. And, despite that, we still see

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that 40 to 50 per cent will get a reduction in seizures." Many adults also undergo KDT, but official recognition of its value beyond childhood is lacking. “As far as adults are concerned, KDT services are emerging but there hasn’t been a randomised controlled trial conducted yet. There is lots of evidence supporting it but not at the level we have with children and young people.” In the first and largest study of ketogenic diet in adults, published in the US in 1930, over half achieved at least a 50 per cent reduction in seizure rates. More recently, meta-analysis of 12 relevant adult trials, incorporating 270 individuals, reported efficacy in 42 per cent of cases, showing parity with paediatric trials. Almost half of these studies used a liberal version of KDT known as the modified Atkins diet. Further trials are needed, says Wood. “KDT is effective in adults but there is not enough evidence. We use it in adults and yes

Brain injury, Alzheimer's and Parkinson's all have a component of fuel dysregulation in the brain. we would say that the efficacy is comparable to children.” KDT is not for everyone, however. “We are talking about something that is delivered under the control of the individual or their family, not under total medical control like taking a tablet. It’s something that you have to deliver within the home or as an individual, so you have to be taught and supported and trained in how to do that. That’s not the ideal situation for certain people but there obviously are a large number of people who would like the opportunity to explore it. That’s where our support, campaigning and trying to enable services comes into play. “It’s not readily available in adult neurology departments. There are just pockets of availability, but they are limited and there

is very little funding. The NHS has managed funds and the way to set up services for a treatment is to have randomised control trial evidence. "That’s not there yet. If you’re trying to bring in a more novel approach, albeit from the 1920s, you have to jump through these hoops. “Such trials have been promised in the past but have never happened. So, we are still waiting for them to take place anywhere in the world. It takes a lot of investment and funding to carry out these types of trials.” For adults and children, evidence suggests that KDT goes far beyond seizure reduction in epilepsy. While increasingly linked to weight loss programmes, its relevance to serious diseases, including those of the brain, is also being recognised. An influential paper (Paoli et al, 2014)

reviewed evidence for KDT in treating neuromuscular and neurodegenerative conditions. Although calling for more in-depth studies into the wider potential of the ketogenic diet, it noted that evidence suggests the mechanism of KDT could: • Provide an efficient source of energy for the treatment of certain types of neurodegenerative diseases characterised by focal brain hypometabolism such as Parkinson's and Alzheimer's. • Decrease the oxidative damage associated with various kinds of metabolic stress. “If compared with glucose metabolism, ketones generate lower levels of oxidative stress in the brain together with a greater cellular energy output and antioxidant capacity,” it reported. • Improve “mitochondrial pathways” which can help to improve brain and neuronal metabolism. • Allow ketones to bypass the defect in mitochondrial activity founded in the skeletal muscle and spinal cord of Motor Neurone Disease patients. Wood says: “There is work going on around the world looking at this in terms of a whole host of different neurological conditions, including brain injury. When you injure the brain or have a stroke, often the dysregulation of the fuelling of the brain is a component of that and causes part of the damage. The use

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of ketones, a fuel that can be used within the brain very easily, can serve as an alternative fuelling that can help cellular functions to be maintained and continued, for example if there is a dysfunction in glucose metabolism. “It’s almost like putting in another fuel as a side-line. This is where ketogenics has really got to be properly explored in adults. Conditions like brain injury, Alzheimer’s and Parkinson’s all have a component of fuel dysregulation in the brain. Ketones could provide an alternative fuel and either modify the disease’s effects or navigate around the [problem areas]. Epilepsy is obviously key, but there is also potential if it were to be explored, for KDT to be used in a wide range of brain conditions.” As well as reducing seizure frequency, KDT can also lessen their intensity and shorten the recovery time needed afterwards. But there are other positive spin-offs too. Adults in particular note greater clarity of thought and concentration, more energy and an upbeat mood. “It’s not just about counting seizures. It’s about clarity of mind and feeling much stronger and fitter. Patients often feel much clearer in their head, even if they are still on medication. When we add it on top of the existing medication, patients can still get dramatic changes, even if they had felt lots of side effects from the drug. Often it deals with brain fog - this sense of drugginess - as well as poor energy levels and concentration. “Changing the fuelling of the brain can really alter all those aspects. The target is to control seizures but it’s the other dimensions that are really important to people. They obviously want to manage the seizures but aren’t necessarily fully aware of the disability they have on a daily basis from that general cloudy feeling. When brain fuelling is factored in, they can get this sharpness; that’s the payback for having to think carefully about what they are eating every day. “A lot of people actually follow ketogenic diet plans simply for wellbeing now, although not to the level of detail used for epilepsy. It’s much more mainstream to eat lower carb diets and there are many recipes that people can choose to eat to be happy while doing it.”

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For professionally delivered KDT, the following general principles apply: • A very low carbohydrate intake • An increased fat intake to provide adequate calories, replacing those lost through carbohydrate restriction • An adequate protein intake • Overall energy control to match individual requirements, delivering growth, weight loss or weight stability as required • Vitamin, mineral and trace element supplementation as required. • Medical assessment and biochemical screening pre-therapy with reviews throughout treatment at three, six and 12 monthly intervals depending on the age/ wellbeing of the patient and stage of therapy • Ongoing home-monitoring of symptoms, plus weight, growth, blood or urine checks • Regular discussions with the managing dietitian (by telephone, email or face to face) to review this data and agree on ‘fine-tuning’ the diet prescription to optimise symptom management. As Wood explains, it is not a DIY diet and must have input from professionals, initially at least. “It is a therapy that needs to be carefully navigated. Having said that, some doctors may say ‘I think KDT would be good for you but we can’t refer you to anybody… Try it yourself’. People might get some benefits but they really need help and navigation to really optimise things, build their confidence and make sure they are doing it the right way. “A lot of the people referred to it have got dysfunctions. If a child has complex epilepsy, for example, that might be part of whole host of disabilities and dysfunctions. We must make sure that we screen the individuals biochemically to make sure that they have the ability to adapt to metabolising fat. Most of us can do it and switch quite easily between using mainly carbs and fat, but there are those individuals who can’t. It’s very important that we don’t put someone on a ketogenic diet who, in fact, has some sort of abnormality in their ability to metabolise fat. “The whole medical picture has to be looked at, with the individual biomedically screened. If that’s all fine, we discuss the pros

The whole medical picture has to be looked at with the individual biomedically screened

and cons of the treatment, including with the family, carers and the adults. Then you would train them for a couple of hours at least with an expert. This is based around the individualised prescription, enabling them to

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The ketogenic diet in a nutshell The four approaches to KDT are:

Classical KD

All foods are measured and combinations are selected to maintain a similar ratio of carbohydrate, protein and fats at meals and snacks. This is referred to as the ketogenic ratio (e.g. 2:1, 3:1, 4:1) and is calculated by dividing the total grams of fat by the total grams of carbohydrate and protein combined. While the higher classical ketogenic ratios (if required) may be easily achieved in the diets of younger children, ketogenic ratios beyond 3:1 are not so feasible for adults and older teenagers due to their higher daily protein requirement.

Medium chain triglyceride (MCT) KD

All foods are measured and combined to deliver a steady percentage of energy from carbohydrate, protein, long chain triglycerides (LCT fat from foods) and medium chain triglycerides (MCT from prescribed oil/ emulsions, etc) in all meals and snacks. The MCTs provide 30-60 per cent of total energy and are more ketogenic than LCTs; enabling a lower total fat intake and a slightly more liberal intake of carbohydrate and protein. MCT oil or emulsion may be used as a finetuning option alongside any form of ketogenic therapy if enhanced.

Modified Atkins Diet (MAD) USA Protocol

initiate the diet. It’s about controlling the mix of carbs, protein and fat instead of delivering them in a random fashion, altering fuel control in the brain. “There are degrees of preciseness… There is a more liberal approach, where you really tightly control the carbs and you deliver plenty of fat but you don’t necessarily control the protein. That can work as well. We have to pick the right approach for the right person.” As the 100th birthday of the ketogenic diet approaches, Wood believes its role in neurological healthcare will become increasingly prominent, as long as access to the therapy improves. From the 1920s when diet therapy prevailed

to the subsequent drug-dominated years, “things are going to come full circle and we are going to have to go back to looking at nutrition very carefully,” she says. “Nutrition is often left out in the NHS but is a very important part of disease management. “We want KDT to be available to people who wish to explore it. "Not everyone with epilepsy would jump at the chance to change their diet, but there are others who are desperate to change things and have been for years. "It’s up to individuals and we want them to be allowed to explore it. "We know that around 50 per cent of them will get a really good effect, if not more.”

Only carbohydrate is carefully controlled (10-20g per day depending on age) and always combined with a generous source of fats. Protein foods are eaten liberally alongside it. In the UK, many centres use a slightly more controlled version of the MAD; providing some portion of guidance to ensure an adequate fat intake and counselling towards a moderate intake of protein foods, to aid ketosis. We refer to this as a Modified KD (MKD).

Low Glycaemic Index Treatment

This is similar to a MAD, the essential difference being that the carbohydrate allowance is approximately 10 per cent of energy requirement (25g CHO per 1,000kcals), but restricted to sources of carbohydrate with a Glycaemic Index of 50 or below. This approach may be an option for seizure management as its goal is glucose control rather than ketosis. However, this approach would not be favoured as adjuvant therapy in brain tumour management, or for conditions where ketone levels are perceived to play a more directly relevant role. source: Network Health Digest

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Breakthrough research on brain cooling promises new treatments for stroke and brain injury patients young and old, as NR Times discovers.

in rehab?

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ffshore oil and gas explorers have inspired a journey into unchartered waters for neuroscience. For the energy industry’s precise understanding of fluid and heat flow has been used to investigate how blood transfers heat around the brain. And the results could bring about new ways of treating head trauma and stroke in their immediate aftermath. Dr Prashant Valluri, of Edinburgh University, is an expert on “mathematical modelling of flows”. Usually this sees him working with industry, analysing the flow of substances or heat around complex systems like oil rigs or computer circuitry. Blood in the brain is his latest area of focus, however. “As chemical engineers, when we design cooling systems, we know the most efficient way is to have flow. If there is no flow, it will take a lot longer to cool down. “It was therefore quite shocking to see that flow in the brain had never really been seriously considered – perhaps because computing technology used in brain modelling was not fast enough in the past. This took us by surprise, but gave us an opportunity to change things. “We decided to see if flow is necessary or plays an important role and found that it plays a dramatic role in terms of heat transfer.” The study, based around sophisticated 3D simulations, has provided new insight on how the brain responds to medically induced cooling, which is routinely used to limit head injury damage. The ongoing research brings together the university’s

medical and engineering faculties. Its overall aim is to pave the way for new and improved ways of brain cooling following stroke or head injury. Current methods include cooling the entire body temperature, particularly in new born babies with brain injury caused by oxygen shortage during birth. In this procedure, the baby’s body is usually cooled using a special mattress filled with cooling fluid. Sometimes just the head is cooled using a custom-made cap. As the temperature is lowered from the normal 37°C to between 33 and 35 °C, the processes that cause brain damage have been shown to slow down. Similar methods are also used among adults after stroke and brain injury. Other approaches include cooling via nasal gas flow, head fanning and liquid-based head and neck cooling devices. Induced hypothermia in adults sees patients given ice cold intravenous drips within 10 days of their accident and kept cool with cold water blankets or cooling pads for at least 48 hours. While the practice is widely used in European and North American intensive care units to reduce head pressure linked to brain damage – recent research has questioned its value in supporting long term recovery. A 2015 study, also by the University of Edinburgh, tracked 400 traumatic brain injury (TBI) cases from 18 countries. Around half of the patients were treated with standard procedures. The other half were treated with induced hypothermia to try to protect the brain from further damage caused by swelling. The team found that induced hypothermia was successful at reducing the build-up of pressure in the skull after head injury. Six months later, however, patients who had received the therapy were more likely to fare worse than those treated with standard care.

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Favourable outcomes, ranging from moderate disability to good recovery, occurred in only a quarter of the patients in the hypothermia group compared to more than a third of patients in the control group. Doctors ended the trial early because of fears that the therapy may cause harm to some patients. Valluri says: “The issue with methods such as scalp cooling is that they are empirical. They are not really informed by the physics of what’s going on in the brain. There’s no device that can tell you how long cooling should be carried out for, for optimal results. It’s more a case of ‘see what happens’. It isn’t always clear what the exact routine should be, especially in the event of complications.” The latest study out of Edinburgh promises to refine the brain cooling process. It shows that the potentially dangerous process of cooling the entire body may not be necessary to achieve the reduction in core brain temperature needed to minimise damage. Valluri and colleagues – including experts from both medicine and engineering academic fields – have developed a detailed "bio-heat" model of the brain, showing the impact of cooling. The model is the first to take into account simultaneous flow, heat transfer and metabolism between arteries, veins and brain tissue in three dimensions throughout the organ. The “vascular porous (VaPor) model” factors in cerebral blood flow, energy equations, including heat generated by metabolism (based on MRI data) and

This could dramatically help babies at risk of longterm damage at birth

clever “tree generation” algorithms. The result is a more detailed picture of how the brain responds to medically induced cooling than has ever before been available. Using computer simulations, researchers found that cooling the heads of newborn babies to 10°C would enable their core brain temperature to fall from a normal level of 37°C to below 36°C - which is recognised as low enough to aid recovery. This could dramatically help babies at risk of long-term damage from birth complications, without having to cool their entire body, researchers say. When applied to adult brains, the model predicted that head cooling was able to precipitate a potentially beneficial 0.5°C drop, in line with clinical observations. Going forward, the model will be modified to test the impact of stroke and administered drugs on the brain. Upon publishing the results, Ian Marshall, of the University of Edinburgh's College of Medicine, who co-led the research, said:

"Getting vital patient information such as core brain temperature is a challenge and is only currently possible through expensive MRI scans. A robust model which can predict temperature and blood flow is therefore the need of the hour." Marrying the expertise of engineers and doctors was crucial to the study’s success, believes Valluri. It could also support the next stage – new techniques or devices which better target core brain temperature reduction for better outcomes after brain injury, he says. “The most important thing to come out of this study would be to develop a cooling device. Once we have an idea of what the brain temperature will be if someone has a complication, what treatment will avoid further damage? “Ideally any new device should not be expensive. It should be accessible to everyone, and quick to administer. Perhaps it could be wearable and flexible. It should also be small; in the event of a complication, there is already a lot of medical equipment involved so we don’t want to load the ambulance up with more. The device should also cater for people of any age. “Of course, it might be that a new routine, rather than device, is what’s required.” Valluri summarises the achievements of the researchers so far as merely “mimicking reality to the extent that it is possible to act”. What actions follow the findings could have major implications for neuro-rehab.

Lowering temperature raises survival rates A 2015 study by the University of Edinburgh found inconclusive evidence that inducing hypothermia in post-brain injury patients supports long term recovery. A more recent study, however, suggests that it does save lives after trauma. Therapeutic hypothermia (TH) involves reducing the body temperature of a person to protect neurons from being killed off or damaged. Researchers from Royal Holloway, Ashford and St Peters Hospital and Imperial College London evaluated the value of TH in 2016. They found that adults subjected to TH were significantly less likely to die or suffer serious cognitive impairment due to damaged neurons. “Lowering the body temperature to treat people with TBI is a controversial treatment, but one that our latest research has shown to reduce deaths and long-term injury,” said Professor Pankaj Sharma, director of the Institute of Cardiovascular Research at Royal Holloway. “We have undertaken the largest such analysis of data on the use of therapeutic hypothermia and have found that patients have an 18 per cent better chance of surviving and a 35 per cent improvement in neurological outcome if they are given this treatment.” Researchers looked at around 3,100 cases of TBI in adults and around 450 cases in children.

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BIG DEBATE Westminster focused on acquired brain injuries recently in a landmark Commons debate. NR Times reports on the highlights

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Caroline Lucas (Brighton, Pavilion, Green) underlined the lack of funding for support for relatives and carers. “It can be incredibly stressful for the person themselves and for family members if people do not know how best to provide care. Funding can make a huge difference.”

Debate chair Steve Brine, parliamentary under-secretary of state for health and social care, began the debate by putting ABI into context. “While prevalence estimates for ABI are quite hard to make, the number living with it is thought to be over 500,000 and could be as high as one million people. The total cost of brain injury in the UK has been estimated by our officials t o b e a t l e a s t £ 1 b n p e r y e a r. “A B I c a n h a v e a d e v a s t a t i n g i m p a c t on our constituents’ lives; even minor head injuries can cause short-term impairment. Those surviving more severe injuries are likely to have complex long-term problems affecting their cognitive and f unctional ability, personality, close relationships and ability to return to any form of independent life.”

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Alex Chalk (Cheltenham, Con) introduced the issue of brain injury and the increased propensity to commit criminal offences. “We are starting to wake up to the fact that a number of people in custody have sustained precisely that injury. That should be a focus for preventive work in future.”

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Living with a brain injury is difficult enough for people without having to struggle to explain and prove their disability to anyone who lacks understanding of the condition

Jim Shannon (Strangford, DUP) provided a case study example of brain injury – his brother who suffered a motorbike accident. “It took him from being a person with his own business and social connections to being someone who could not co-ordinate more

than one thing at a time… We need not only help for the person in an institution; they need to be taken home and given a semblance of order in their lives and what quality of life is possible. Does the minister [debate chair Steve Brine], accept that families need help to take on that job for

someone whom they love and want to help?”

Steve Brine said the all-party

parliamentary group (APPG) on ABI would consider the wider family in its current review of brain injury issues. He also highlighted other areas where ABI’s impact is felt and action is under way. “On education, many children and young people with ABI are rightly in education and have special educational needs as a result of their injuries. The government recently provided £29m to support local authorities with ongoing implementation of individual education, health and care plans to meet those needs. It is vital to us that health, social care and education services work jointly in developing these care plans. “On offending behaviour there is an increasing body of evidence suggesting that children and young people who survive traumatic brain injury are more likely to develop behavioural problems that can be linked to an increased vulnerability to offend… The Ministry of Justice is piloting approaches to improve screening and support for prisoners with ABI to prevent a cycle of re-offending once they enter the secure estate. On head injuries in sport, he said: “The government commissioned an independent review of the duty of care that sport has to its participants, which published its findings in April 2017, and we are now working to implement its recommendations, including around awareness and prevention of head injury while playing sport. “On trauma centres, it is vital that those with the most serious brain injuries receive the best care that our NHS can offer. In 2012, 22 regional trauma networks were developed across England. Within those networks, major trauma centres provide specialised care for patients with multiple, complex and serious major trauma injuries, including brain injury. Two years after their introduction, an independent audit of the network, commissioned by NHS England, showed patients had a 30 per cent improved chance of surviving severe injuries and that the networks had saved 600 lives. “A vital part of the treatment pathway

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BIG DEBATE for people who have suffered ABI is neurorehabilitation that is timely and appropriate to their needs. There is good evidence that access to high quality rehabilitation both improves outcomes for patients and can save money."

Nic Dakin (Scunthorpe, Lab): “The

neurorehabilitation centre in Goole is an excellent example of such practice. It serves north Lincolnshire and the wider area. I commend that service, and others like it.”

Steve Brine explained how the NHS is stepping up its approach to rehab: “The World Health Organisation states that rehabilitation intervention should be aimed at achieving the following five broad objectives: preventing the loss of function; slowing the rate of loss of function; improving or restoring function; compensating for lost function; and maintaining current function. NHS England’s Improving Rehabilitation programme applies these principles, rightly, in a holistic way to encompass both mental and physical health. In 2015, the programme published the principles and expectations for good adult rehabilitation to support commissioners in delivering rehabilitation care locally in our constituencies. This document describes what good rehabilitation looks like and offers a national consensus on the services that we think people should expect.” Eddie Hughes (Walsall North, Con): “It is important that we consider that it is not just trauma with regard to ABI. One of the other causes might be excessive exposure to carbon monoxide, so I was grateful for the support [brain injury charity] Headway gave to my private Member’s Bill, which seeks to introduce mandatory carbon monoxide detectors in new-build and social rented houses.” Steve Brine: “Obviously, there are non-

traumatic injuries, those through conditions such as meningitis and stroke, for example, but he is absolutely right to point out that issue.” Brine then set out the current picture

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of how brain injury care is delivered. “The rehabilitation programme includes 10 principles and expectations that were designed by people who use rehabilitation services — the carers, healthcare professionals, commissioners, strategic clinical networks and national clinical directors. Building on this, in 2016, NHS England published further rehabilitation guidance covering both adults and children. This provides local service planners with a commissioning model, a range of case studies and crucially, an evidence base for the economic benefits of delivering high-quality rehabilitation services. “While the vast majority of rehabilitation care is locally provided, NHS England commissions specialised rehab services for those patients with the most complex levels of need. Teams within trauma units assess and develop a rehabilitation prescription for patients with ABI. Through this, patients can access specialists in rehabilitation medicine, whose expert assessment helps to inform the prescription. The teams manage ongoing patient care, including a key worker to support patients through the pathway and into rehabilitation at a level appropriate to their clinical need, in accordance with their clinician’s advice — be that highly specialised rehabilitation or through a local provider in the local network.” Brine also explained various brain injury-relevant investments being made by government, including the £1bn a year going into health research through the National Institute for Health Research (NIHR). The NIHR is funding ABI research from basic science to translational research in civilians, military and sport. For example, it is investing

over £100m, over five years up to 2022, in a biomedical research centre in Cambridge that is developing new approaches to reduce the impact on patients’ health and wellbeing of neurological disorders, stroke and brain injury. Other investments highlighted include the £5m which is co-funding a surgical reconstruction and microbiology centre in partnership with the Ministry of Defence, that has been ongoing since 2011. Also, the £16m that has been spent on brain injury research since 2014 through the NIHR's health technology assessment programme. A further £2m over three years is being spent through NIHR’s global health research group on neurotrauma. Brine continued: “The evidence shows that neglecting rehabilitation is a false economy. Rehabilitation equips people to live their lives, fulfil their potential and optimise their contribution to their family, their community and society as a whole.”

Sharon Hodgson (Washington and Sunderland West, Lab): “Despite the fact that so many people are living with ABI, it is little understood… A brain injury can happen in an instant, but its effects can be devastating and last a lifetime. Thankfully, due to excellent advances in emergency and acute medicine, more and more children, young people and adults now survive and live with an ABI, but this brings its own challenges. As evermore people survive an ABI, further pressure is put on the vital services that people require. “Many individuals with an ABI require early and continued access to neuro-rehabilitation to optimise their recovery. The United Kingdom ABI Forum [UKABIF] says that

The evidence shows that neglecting rehabilitation is a false economy. It equips people to live their lives, fulfil their potential and optimise their contribution

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the average cost of initial rehabilitation programmes is offset by savings in the cost of ongoing care within just 16 months and that this leads to an average saving over a lifetime in care costs of £1,475,760. That is a huge amount of money. Neuro-rehabilitation is therefore one of the most cost-effective services the NHS provides and one of the few services in medicine that results in long-term decreased costs to the economy. “However, as is the case for many health conditions, the number of available beds across the UK is inadequate, service provision is variable and consequently long-term outcomes for brain injury survivors are compromised… UKABIF recommends a review of neuro-rehabilitation to ensure that service provision is adequate and consistent throughout the UK.” Hodgson also questioned what measures were being taken to ensure children with an ABI receive the support needed throughout their education journey. She also called for more ABI awareness-building beyond education professionals, in wider society.

She pointed to the case of Grace Currie, the brain injured adult who was escorted out of a pub because she was believed to have been “too drunk”, despite having only had one drink. “Sadly, such encounters are not rare, and the level of misunderstanding of brain injuries is high among the general public, including assessors for employment and support allowance and personal independence payments. Living with a brain injury is difficult enough for people without their having to struggle to explain and prove their disability to anyone who lacks understanding of the condition.” She also praised the local community work of Headway, and specifically its Wearside branch, which works with around 4,000 patients.

Jamie Stone (Caithness, Sutherland and Easter Ross, LD) questioned how support for families caught up in the storm of brain injury could be increased. Drawing from his own family's experience of ABI, he said:

“My children got through it, but it was touch and go, and I remember these events without much happiness.”

Sharon Hodgson: “Unfortunately, not

every patient with an ABI will have access to a service like Headway Wearside. If the minister is to take away one thing from this debate, I urge him to recognise the need for services [like this].”

John Hayes (South Holland and

The Deepings, Con): “The immediate, traumatic effect [is] invariably dealt with efficiently and effectively by the NHS... But the ongoing issues associated with ABI are met with various kinds of responses. Sometimes the follow-up care is good, strong and effective, but that is not always the case because of the need to continue to respond to what are often rapidly changing circumstances. People’s speed of recovery can vary, as can the effect of their injury on their life, their competence and their skills.

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BIG DEBATE Hayes set out his key priorities: • Co-ordination; ensuring all agencies, including charitable, government and local government, work together • Perpetuation; understanding that the condition might require long-lasting care and treatment • Accentuation; driving the issue up the agenda of public policymakers • Concentration; pooling resources and targeting them for the greatest effect •Accumulation; building on the experience of charities and groups He said: “We need to work on educators and employers to enable them to understand that the pathways that people follow need to be attuned to their complex and changing needs.”

Lisa Cameron (East Kilbride, Strathaven and Lesmahagow, SNP) whose husband had a brain injury several years ago in the army, and who formally worked with brain injured patients as an NHS psychologist, said: “This is often a hidden disability. I would

describe it as invisible much of the time and that contributes to much of the discrimination. It can have a major impact on people’s cognition, their personality, particularly if it is a frontal lobe injury, and their planning ability. It can have an impact on an individual's speech. “Some have to relearn vocabulary and the names of people they once knew. In severe cases, it can have a significant impact on someone’s memory. Consequent to all that is the impact on people’s mental health and their confidence.” She highlighted difficulties in relation to welfare benefit assessments, particularly

for employment and support allowance and personal independence payments (PIPs). “Those with an ABI often feel that their difficulties are not understood and not well assessed under the current procedures, so we need not only further training for assessors, but possibly to review the assessment process itself. "Assessment sometimes does not pick up the fine changes that can have such a crucial impact on the daily living skills of people with an ABI. “Support will be necessary because it can be difficult for those with such injuries to complete forms, gather adequate evidence and so on.”

Jamie Stone: “Do [you] agree that

there is some evidence that the mobility aspect of PIPs is not being recognised in this regard?”

Lisa Cameron: “Yes, that is a fair point.

Mobility is about not just how far someone can walk, but being able to plan a journey and many other aspects of day-to-day living skills that people can find so difficult. People may require support for such things,

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but that may not currently be picked up properly by an assessment. “Access to neuropsychology means that individuals can have memory and cognitive assessments at the time of injury and six and 12 months later to examine which functions have been recovered. “That is important because different parts of the brain can take on functions that have been lost and because the individual’s pattern of recovery can be mapped, meaning that a rehabilitation plan can be specifically adapted to their needs. "Access to neuropsychology is a key part of rehabilitation." On brain injuries in prisons, she suggested that offender treatments like cognitive behavioural therapy should be adapted to allow prisoners with head injuries to benefit. “I am unsure whether that is occurring in our prison system, but it should happen right across the UK if cognisance is taken of such difficulties,” she said.

that rely on people thinking things through in a sequence, which is particularly difficult for those with a brain injury, will not always be appropriate and may need to be adapted.”

Bill Grant (Ayr, Carrick and Cumnock, Con) then called on the government to ensure that those assessing claimants on behalf of the Department of Work and Pension (DWP) understand that, given the nature of their injury, the sufferer may lack personal awareness and may be under misconceptions as to their own capabilities. He added: “The sufferer may believe they will return to normality, for when they look in the mirror they still see their former self. “To the onlooker, the sufferer may not present with overt symptoms, and often their life challenges are covert in nature… "Appropriate questioning on forms and at assessments and hearings is crucial. "For cases where the maximum recovery

who fatigue easily. “Secondly, I call on the government to ensure that the NHS is able to offer the crucial multidisciplinary support from an NHS team that is required in many of these cases, to provide ongoing rehabilitation and to recognise that a person’s treatment plan may need to be bespoke as, with ABIs, it is not a case of one size fits all. The symptoms and challenges faced by a sufferer have changing dynamics throughout their life. Professor Diane Playford, president of the British Society of Rehabilitation Medicine, has stated that there are not enough specialist rehabilitation facilities for those with brain injuries. “Thirdly, we should recognise the dedication of family members who do not necessarily see themselves as carers but who undoubtedly, through their own personal efforts, lighten the burden on our social care services and the NHS. "This dedication on their part can lead to their

point has been reached, according to medical opinion, will the government consider making long-term awards? "Completing application forms is challenging for persons who lack concentration skills and

own social isolation because brain injuries tend to have cognitive, physical, behavioural and emotional consequences that have an impact not just directly on the sufferer, but indirectly on the carer or the family

John Hayes: “The change

in a person’s cognitive function, which is often perceived as a change in their ability to do things, is often also about them knowing how to do things, what to do, when to do it and why. That is different from losing a skill. It is about losing the ability to order things and to prioritise them, and that has a dramatic effect both on education and on their subsequent ability to work."

Lisa Cameron:

“Individuals with a frontal lobe injury find planning extremely difficult and, in fact, may never again be able to plan in the way they once could. These are some of the issues that treatment would have to take on board, and perhaps further support will be required. "The types of cognitive behavioural treatment

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The

BIG DEBATE The miracles that can be achieved in saving lives can be matched by the miracles achieved through really good, long-term, sustained rehabilitation

members." He also suggested reaching out to employers to encourage them to engage with the government’s Disability Confident Scheme, retaining and retraining brain injured employees where appropriate.

is that we have to get teachers to be more aware of this. If one thing comes out of this debate, it should be exactly that. We need to co-ordinate across departments to get teachers to recognise and know this."

Chris Bryant (Rhondda, Lab) who chairs

Chris Bryant: “I completely agree, not

the brain injury APPG, said: “All too often ABI feels like an invisible epidemic to the individual concerned, because they might not ever have known they had a brain injury in the first place. “Some of the most distressing work that I have seen has been done by people working in prisons. I was in Cardiff prison a couple of weeks ago to see the work being done there with prisoners... The work Huw Williams [a neuropsychology expert and professor] has done at HMP Leeds showed that when we screened every prisoner arriving through the door we found that 47 per cent of prisoners had an ABI, that 76 per cent of those had several and that 30 per cent of those had more than five brain injuries. This is often invisible in the case of children, too. The latest figures I have seen show that five children in every primary school class in this country will have an ABI… The figure for poorer constituencies, and for poorer families and areas, will be considerably higher. The research is a bit difficult to be precise about, but a study in Exeter showed that it was 4.3 times higher in poorer areas, and another survey elsewhere found it was three times higher in poorer families. So, for me, as a socialist, this is still a matter of social justice as much as anything else."

John Hayes: “As a non-socialist and member of the party of Wilberforce, Shaftesbury and Disraeli, I believe in social justice, too. The key thing that [has been] said 46

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least because of one thing that sometimes happens to teenagers. Part of their brains will be quite well developed - the reward bit, the one that knows how to seek out pleasure - but the area of the brain most likely to be hit if they have a brain injury is the bit that is not yet well developed, which is the executive function. It is this bit that gives that youngster the ability to say 'no' to things or to control their emotions and their functions. All too often, if that bit goes wrong, they can start to present in school as somebody who is a problem. They may then get excluded from the school, because it is not understood that this is actually about a brain injury. "Perhaps the student themselves does not understand that. “They may then start offending and we may find several years later that they have a whole career of offending and that if we had managed to do the rehab properly right at the beginning, when the first brain injury happened, we might have been able to save that individual their self-respect and selfesteem, and we might have been able to save society the costs of all the criminality.” Moving onto head injuries in sport, Bryant continued: “Rugby has tried to clean up its act in recent years, but in so many sports, even all these years after footballer Jeff Astle’s brain injury, which was determined to have been an industrial injury brought on by heading the ball, we still see in matches people being sent back on by the club medic. "Only an independent medic should make the

decision about whether somebody should go back on. If there is any doubt, sit them out. It should be simple and that should apply across all sports. “The government has had a great success thanks to the major trauma centres [which] manage to save an extra 600 lives every year. That is brilliant, but let us save the quality of their life as well. The miracles that can be achieved in saving lives can be matched by the miracles that can be achieved through really good, long-term, sustained rehabilitation. If we can take an 18-year-old who has had a big brain injury from needing six carers to wash, dress and feed them, to a place where they no longer depend on those people, are mostly independent and need only one carer, think how many millions of pounds we can save the taxpayer across their lifetime. That must, of course, be the most effective way to change things.” Bryant reiterated previous points about flaws in the personal independence payment and employment support allowance systems: “One woman said to me, ‘the doctors say to me that I should spend all my emotional energy on getting my brain to work again, but I am spending all my emotional energy on trying to understand the forms and going through the process so that I can put food on the table for the rest of my family’.”

Michelle Donelan (Chippenham, Con) said: “It is so important not only that A&E training in the detection of brain injuries is up to date, but that there is strong public awareness of the symptoms, to ensure that help is sought immediately. Equally, that is why we must continue to invest in research so that we can detect earlier and treat more effectively… Brain injuries affect all aspects of a person’s life. They are not only an issue

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for the NHS, because they also have massive implications for a person’s social care, eligibility for employment and disability benefits, ability to navigate the judicial system and education, to name but a few. "That is why cross-departmental working is so vital and why the support available and knowledge of it is so crucial, as is increasing general awareness, especially given the fact that every ABI is so different. “For example, I have a constituent who has been able to work a number of hours with a severe ABI and is on universal credit. However, when an error was made, a request for back-payment was issued. A factual letter was sent, but it was an inappropriate letter to send to someone with a severe brain injury. It caused great distress, and it would have been

better had a personal approach been taken... That could and should have been done. We also need to get individuals and families to volunteer the information to work coaches and those sectors that need it, which is why I welcome the roll-out of community partners. That will help to facilitate that work up and down the country.”

John Woodcock (Barrow and Furness, Ind) recounted his own head injury experience: “I was incredibly lucky because, when I fell off a ladder onto a wooden block in my attic in a classic case of what not to do around the home, I was eight feet off the ground and my head 14 feet off the ground. I did not suffer a brain bleed. I was profoundly lucky to be in a job with a support system around me and

with wonderful staff who were able to take the load from me for a full two years. At first, I was not able to work pretty much at all except for very small bursts. I slowly built that up, but I had to resign from the front bench. “My personality changed… I became much less risk averse in a way that was not healthy. I suffered from depression. As I was recovering, I was not able to spend time with my small children. My marriage broke down, and I could work only for very small amounts of time. I feel so lucky because there are so many people whose employment circumstances would not allow that at all and who would not have the system around them. I was lucky because I was able to understand the system and to ask for the best care. I eventually was referred to the best care in

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BIG DEBATE the NHS and I got it and I have pretty much been able to make a full recovery. My family will tell me what a nightmare I am whenever I try to find something because my short-term recall, which was never good in the first place, will never come back to even the mediocre place that it was in before. “Yes, we should be so proud of the positive role that the NHS can play, but it is not the case that everyone receives good care when they acquire a brain injury… I was given great care by paramedics who thought that my back could be broken when I fell off the ladder. All the tests were done. I was very, very sore. When I was released the next day, I was not even given an [information] leaflet.” “I thought that concussion was something that lasted for 24 to 48 hours. After a couple of weeks, I found that I still could not really work, except for very short 30 to 90 second bursts, I went back to my GP who said, 'you have a stressful job and a young child. I think you are suffering from stress.' I said, 'no, I’ve worked for Gordon Brown; I know what stress is. This is not stress.' It was only because I was able to push and because he had a personal relationship with the lead neurologist for the area that he picked up the phone and I was seen. So many people do not have that."

Liz Twist's (Blaydon, Lab) contribution to the debate included focus on child brain injury issues. “Department of Health data shows that in a four-year period, 39,000 under fives were admitted to hospital because of falls. Many of these children will be discharged as fully recovered, although the outcome of traumatic brain injuries in children may not become clear until their brain is fully matured. In fact, despite the early years being a key point in brain development, it is also the time when children are most vulnerable to injury. Sadly, it is also the least supported age group. “The [brain injury] APPG heard from the Child Brain Injury Trust that children are very different from adults after ABI, because their brains are still developing and will continue to do so until they are in their mid-20s. The 48

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full extent of their injuries and subsequent difficulties may not be realised until their brains have fully matured. Up to 70 per cent of young people return to mainstream education following their injury. “In common with many other groups, there is a lack of interim access to rehabilitation, whether residential or in the community community being the main issue for children and young people - so schools and teachers are the main source of rehab for these young folk. Unfortunately, those teachers, including

special educational needs co-ordinators and educational psychologists, do not have access to training in how to deal with children returning to school with ABI. Of course, we know about the pressure that teachers already face in their work. Many young people do not have a formal diagnosis of ABI, so they can be misdiagnosed as being on the autistic spectrum or as having attention deficit hyperactivity disorder. This can be a real detriment to their outcomes and future development. In the family, the

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lives and gain meaningful employment. Every day Julian must overcome obstacles due to his ABI, such as being easily disorientated by doors or stairs. Simply entering a building or climbing stairs can be a massive task for him. But Julian advocates for the inclusion of people living with such disabilities and is an excellent example of how disability - whether visible or hidden - should not hold people back from reaching their full potential. He has used his experience to start a human resources company which specialises in inclusion. “Many [brain injured] individuals require early and continued access to neuro-rehabilitation to optimise their recovery, but the number of available beds across the UK is inadequate. Service provision is variable, and this means that long-term outcomes for brain injury survivors are compromised. There is a large variation in the provision of and access to neuro-rehabilitation services across the country, and a lack of neuro-rehabilitation personnel.” Harris urged a full review of neuro-rehabilitation services to ensure more people can build a productive and meaningful life after ABI.

emotional and psychological impact of an ABI can completely change their world. They often face a lack of services in the community, isolation and a lack of access to funding support and information. They may also be unable to access counselling. They are balanced between child and adolescent mental health services and other non-neurological services, as specialist neurological services for children are scarce. Where people live matters; there are few areas of excellence, with the excellent

services mostly based around major trauma units. Our children deserve better than they have at present.”

Carolyn Harris (Swansea East, Lab), vice-

chair of the brain injury APPG, said: “Julian John, a dear friend and constituent of mine, is living with an ABI - an injury that led him to change his entire life path several years ago. He could have allowed his injury to dictate his life but he did not, and instead used his experience to help others to live fulfilling

Paula Sherriff (Dewsbury, Lab) called for more support for long-term rehab. “Although we have first-class acute care in this country, and advances in medicine in recent years that have resulted in many more lives being saved following a brain injury, it is undoubtedly in long-term rehabilitation where much more support is required in order to save and preserve the quality of lives for those suffering from acquired brain injuries - and, of course, their loved ones. Somebody who has suffered a traumatic brain injury could have had three months in intensive care, six months in therapy, and maybe a year in residential care, and then they are often sent home and the help stops. Quite often personalities will have been affected, and the person who comes home could barely resemble the one before the accident or incident that led to the ABI.” She stated that the estimated

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BIG DEBATE £15bn-per-year national cost of brain injury – based on premature death, care requirements, lost work contributions and continuing disability – represents around 10 per cent of the annual NHS budget.

Chris Bryant: “Two suggestions have been made about rehabilitation that might change things: first, that we should have a rehabilitation prescription just like a medical prescription so that the person knows, and the family know, what support there is on an ongoing basis; and secondly, that every single major trauma centre should have a rehabilitation consultant, because one in four do not. Is that not essential to be able to make sure that we change this world?" Paula Sherriff: “Neuro-rehabilitation is one of the most cost-effective services that the NHS provides, and one of the few services in medicine that results in long-term decreased costs to the economy. However, the number of available beds across the UK is inadequate, service provision is variable and consequently long-term outcomes for brain

injury survivors are compromised." Among several other points, she called for a “more co-ordinated and systematic approach to ensure that everyone with an ABI has the same quality of care and the same life chances”. "This service should not be reliant on the charity sector, especially in these times of austerity in which charities are struggling to access vital funds." She also echoed Chris Bryant’s request for a government taskforce across all relevant departments, including Health, Education, Justice, Work and Pensions and Defence and for adequate funding for services.

Steve Brine, summarising, said it was clear that continued focus is needed on providing rapid and appropriate triage and treatment of head injury, to ensure that patients can access the most appropriate service and level of expertise from the start, especially in schools. “We should be seeing joint working between health, social care and education, with multi-professional assessments of a child

or young person’s needs, including all the relevant experts, to get this right earlier and to prevent the cycle of problems that often leads to exclusion, brushes with the criminal justice system and a life scarred more than it already is. Dare I say it, as someone once said, we need to understand a little more and condemn a little less. I still believe in that." Other points highlighted included maintaining a commitment to research. He also responded to calls for a review of neuro-rehabilitation. “The audit that we published at the end of 2016 recommends that all providers reflect on the capacity that they have. The national clinical audit of specialist rehabilitation will address that in the next stages of the audit, which are due to complete later this year. “Through the personal support package for people on employment and support allowance, the DWP is working to improve the support that it offers to those with longterm conditions such as brain injury, including peer support and training for disability employment advisers. However, it sounds like there is a lot of work to be done.”

Some quotes from this debate were omitted while others were shortened.

Comment: how therapy could drive UK brain injury strategy

The Commons debate highlights Britain's many brain injury-related challenges. In solving them, specialist therapies may have an increasing role to play in future, says Daniel Thomas, managing director of Chroma, a leading provider of neurologic music therapy (NMT). He also backs the ABI Alliance, UKABIF and INPA in urging that every person who needs brain injury rehabilitation is "provided with a detailed and time-sensitive rehabilitation prescription". He says: "Chris Bryant MP rightly links this to the value of a medical prescription within patient care. Chroma supports Paula Sherriff MP in her assertion of the economic cost-effectiveness of timely rehabilitation, as well as its clinical efficacy. One of the most effective ways to activate and use healthy, injuryfree parts of the brain within someone’s rehabilitation is done using NMT. Putting NMT and the rehabilitation prescription at the heart of UK brain injury strategy will ensure a clinically effective and cost-efficient approach to long-term rehabilitation for every person with a brain injury.” Gavin Farrell, consultant clinical neuropsychologist at the Central England Rehabilitation Unit (CERU), agrees that NMT could play a bigger part in tackling brain injuries going forward. He says: “Music neuroscience clearly demonstrates how music activates and stimulates a diffuse and wide range of brain regions linked to sensorimotor, cognitive, communication and emotional functions. By using NMT, the clinical application of music neuroscience, healthy and un-injured parts of our patients’ brains get activated. NMT recruits active neural plasticity networks, which can lead to significant and effective rehabilitation outcomes within the time-limited framework rehabilitation must take place in. We look forward to using NMT at CERU.” 50

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n ew horizons in spinal tech Labs around the world are forever buzzing with new findings in spinal science; but separating the viable from the never-going-to-happen isnâ&#x20AC;&#x2122;t easy. Here we enlisted one of the UKâ&#x20AC;&#x2122;s most tech-savvy neuro physios to give us the real picture of the technologies of today and tomorrow that are transforming the outlook for the spinally injured.

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technology

he power of exoskeletons was shown to the world earlier this year when Simon Kindleysides became the first paralysed man to complete the London Marathon on foot. Simon was paralysed from the waist down due to an inoperable brain tumour. Thanks to an exoskeleton, and sheer perseverance, he crossed the line after 36 hours. This follows the epic, 17-day London Marathon feat completed by Claire Lomas, a paralysed 32-year-old, in a bionic suite in 2012. Such positive displays of technology’s role in overcoming adversity are music to the ears of Jon Graham, clinical director of PhysioFunction. While Simon is a client of his Northamptonshire firm and received vital support from it in his marathon bid, Graham is also a passionate advocate for exoskeletons generally. In fact, as a global expert in both neurological physio and rehab technology, he is a keen supporter of any devices that boost independence and recovery. This partly comes from a former life in the computer industry, which included investigations into artificial intelligence and its relevance to medical diagnostics. Today Graham works closely with technology firms, bridging the gap between the lab and client sessions. “People read about stories like Simon’s and still think these technologies are in the research stage, but they are commercially available in centres, so it’s just about getting the word out,” he says. Graham is a well-placed guide through current and emerging technologies for the spinally injured. His company stocks exoskeletons and numerous other devices fresh from the world’s brightest innovators. Graham, meanwhile, has been pioneering new tech in this field for over 15 years. Exoskeletons, perhaps the most promising innovation for people with spinal cord injuries, can loosely be put into two categories. There are hands-free models, controlled via a joypad/stick, that can be driven by the carer or, with minimal effort, by the user, effectively serving as a walking wheelchair. Secondly, are the models which

require a walking aid such as elbow crutches to supplement balance. In the latter category, upper limb power is used to move from a sitting to a standing positon and to maintain balance. Access to exoskeletons in the UK is almost entirely provided by the private sector – a fact Graham is eager to change. Working closely with an exoskeleton manufacturer, he is in ongoing talks with several NHS rehabilitation services about potentially trialling exoskeletons, specifically the hands-free variety. Technology companies are also regularly demoing their exo products to NHS trusts, but a major breakthrough is

The resistance of the NHS to exoskeletons may soften over time

yet to happen. Unlike private individuals, who may buy an exoskeleton because of the functionality it gives them at home and in life generally, NHS buyers have much stricter conditions. “For the NHS to buy into exoskeletons, they have to see how much they contribute to rehabilitation. If our patient has one of these, can we treat them with less physios, or shorten their hospital stay because the device is providing a therapy that we can't provide? That is the case that needs to be proven for the NHS to invest. “They won’t replace physios – they are an adjunct that helps the physio. It is the physio's clinical reasoning and what the physio does with the robot, that leads to rehabilitation. However, in the rehab environment, when used by skilled therapists, it can allow you to do treatments that you just can't do safely with therapists alone. “The machines take a lot of the strain of the lifting and moving. So not only are you using less physios, but the physios you are using are less exposed to physical risk. “The NHS needs to see that these devices

will free up staff, protect staff and potentially reduce inpatient stays because they produce therapy goals earlier. It's chicken and egg as they need to see that proven before they buy one - but they can’t do so until someone makes that first investment. “If we can get these questions answered, then the doors will open because suddenly it doesn't seem like a daunting cost as it will save money in the long run.” The training burden of exoskeletons on staff is another possible concern of NHS purchasers. A study into this very issue, at Moseley Hall Hospital in Birmingham, delivered positive results, says Graham. “Their three-month audit looked at how easy it was to train members of staff to use the exoskeleton and it was very successful.” The resistance of the NHS to exoskeletons – currently only available publicly in Sheffield as far as Graham is aware – may soften over time. The ballpark price range for exoskeletons is £84,000 to £120,000, with models having an estimated five-year lifespan. The cost of exoskeletons prevents most spinally injured people from buying them outright. Individuals not funded by a compensation pay-out, crowdfunding campaign or considerable personal wealth can, however, access regular exoskeleton sessions through providers such as Graham’s. “People sometimes just come to the clinic to have a chance to walk so you can access them relatively inexpensively on a regular basis in the same way you may go to a gym. “It changes your life. Psychologically you are back on your feet and you are communicating with other people on an eye-to-eye level. Time and again users tell us, the walking is great but, for a husband being able to look at his wife at eye level again, for example, it is something else. Tall men with that physical presence in particular seem to suffer with being in a chair. They get a huge boost being back at their original stature.” Pain relief is also a pull factor. “A client described their neuropathic pain to me as feeling like his feet were being crushed, stung with stinging nettles and

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Power up: Exoskeletons can give users newfound independence and confidence

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on fire all at the same time. People don’t know where to put themselves with that sort of pain. Medication that gets on top of it can wipe people out to the point where they are not functional. They have to balance the medication so that they are just very uncomfortable but can still have a conversation. By enabling the limbs to move around, the exoskeleton seems to reduce the pain. The information relayed in the nervous system, because the limbs are moving, seems to dampen down the pain.” Graham recognises that exoskeletons have much room for improvement. “When Simon did the London Marathon, it took two days. The suit couldn’t go any faster – it was doing about a mile every 45 minutes, compared to normal walking speed of one every 12 to 15 minutes. Speed is still an issue. We’ve found that they can get across pedestrian crossings but it means going from the moment they turn green and finishing at the flashing amber.” Cost reduction will also be key in broadening the appeal of exoskeletons. “As more people have them, that could create the economy of scale that brings the price down. Also, with the development of 3D printing, the manufacturing costs could come down. Pressing and moulding is quite an expensive process. If you could print it, prices may come down, especially with experiments currently going on around printing with alloys rather than plastic.” The dawn of so-called ‘smart materials’, meanwhile, could take exoskeleton manufacturing in a completely different direction. Think Batman’s cape – the dark, modern version, not Adam West’s 60s silk. When an electric current is applied, it stiffens, enabling the caped crusader to soar high over Gotham. The same principle could shape the development of exoskeletons, says Graham. “If you had a jump suit, you could pass current through the front of it to stand the user up. You could then alternate the current to different parts, mimicking human muscles by tensing and relaxing." The quantum leap for exoskeletons is to swap controls for raw brain power. Being able to think ‘stand up’ or ‘walk’ and then have the exoskeleton respond accordingly is already

The quantum leap for exoskeletons is to swap controls for raw brain power possible, albeit in a somewhat cumbersome way. Graham caught a glimpse of how transformative this brain-machine interface could be on a trip to a robotics conference in Rome two years ago. He introduced a client to developers from Texas who had melded exoskeletal and brain sensor technologies. “The guy we took out was ventilated and had virtually no activity. He could just about balance his head on his shoulders. Yet by thinking about walking he was able to control the exoskeleton. He said ‘this is the first time since my injury I’ve thought ‘walk’ and I’ve actually walked and moved through my environment’.” The challenge ahead is in making the technology more user-friendly. The set-up for the brain-powered device in Rome took around 40 minutes, involving a skull cap and the careful injection of gel at 46 points for optimum brain monitoring. Once fitted, the computer took only a few minutes to tune into the user’s brainwaves. Streamlining this whole process will be pivotal to the development of exoskeleton technology. “There is quite a lot of eye-gaze technology where eye movements are picked up, but you really have to work your eyes, which can tire them out. Whereas, if it’s just thought, it’s the most natural thing in the world. This is something that’s going to come. “The big development is going to be technology that picks up brainwaves in a really light touch kind of way. It could be just a headband or something like Google glasses. I also think, with all the devices, we’ll see the development of motors and sensors that allow them to work without balancing aids. So, they are walking/balancing suits. Running is probably a long way off but the next five years could see better brain controls emerge.” Graham believes video games, bolstered by Hollywood-eclipsing budgets, will speed the development of such technologies. “I think this will come from the gaming industry, which has phenomenal budgets,”

he says. “What limits a lot of people in terms of gaming is the lack of manual dexterity to use controllers. If the gaming industry could develop something whereby a person could slip something onto their head and control the game by thinking, that would open up amazing things in the medical industry, as well as in gaming.” The gaming industry has already heavily influenced the virtual reality (VR) systems used in rehab centres. “There is immersive VR, where you put on head goggles and feel like you are in a certain environment. This can be expensive and may cause people to feel nauseous afterwards. “At the other end, there is VR where your body movements are replayed back to you on a screen in a computer-created environment. The Xbox Kinect is a good example of this from a domestic point of view.” The modern history of this tie-up between mainstream gaming and rehab perhaps dates back to the 2006 launch of the Nintendo Wii. While other consoles had made tentative attempts at it, this was the first mass-market console to truly put physical motion at the heart of its games. Shifting weight on the Wii balance board and rapid arm movements with the controllers, made avatars run, ski, shoot and swing. The result, aside from massive profits for Nintendo and a global spate of living room injuries, was increased interest from the rehab community in home gaming. Things have moved on since then, but old challenges remain. “The problem with the Wii was that the games were all designed for able-bodied individuals and were too fast for many disabled users. Also, it was too easy to cheat, for example by moving your arms up and down instead of actually running on the spot as you were supposed to. The biggest problem was that you couldn’t tie movement to success in the game, and therefore positive feedback for the individual, because they were designed for abled bodied individuals." Although recently

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discontinued by Microsoft as a home gaming product, the Xbox Kinect remains "a really powerful device that picks up body segment movements," says Graham. "Software is being added to make rehabilitation games work for potentially severely disabled individuals. They link success with tiny body movements, which allows the brain to start relearning. If the brain gets positive feedback, chemicals are released that help with neuroplasticity.” On access to VR technology generally, he adds: "The future of immersive VR depends on the cost of headsets and sensor gloves coming down. That would make the technology more widely available and could be a game changer. People could then start using it in an inpatient environment even earlier. You could have somebody in a hospital bed with the headset and gloves, picking up the tiniest movements.” An emerging trend is using VR systems in the home, with physiotherapists in remote contact with clients, monitoring their performance. “It's like having your own physiotherapist at home – we can dial in with Skype to see the screen and the patient and carry out tele-rehabilitation.” Particularly relevant to neuro-rehab is MindMotion, a gamified VR system developed by neuroscientists, neurologists and therapists for rehabilitation specialists. It provides a large variety of engaging gamified activities that therapists can calibrate and customise to individual patient needs or abilities. It brings together innovative virtual environments and novel neuro-rehab gaming content to engage and motivate patients in both the clinic and at home. Each activity is designed to train a specific movement to reach a therapeutic goal for hand, arm, trunk or lower limb impairment. Movements such as reaching, grasping, pointing, moving and manipulating virtual objects in functional tasks (as recommended by NICE guidelines for stroke rehab, for example) are featured on the platform. Meanwhile, the longer-term future of spinal injury treatment could be dominated by implanted technology. “The future of spinal injury tech will be implanted electrical units,” says Graham.

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Champion: Simon Kindleysides, who completed the London Marathon in an exoskeleton earlier this year

“Stem cell studies seem to have ground to a halt, whereas interest in electrical implants seems to be increasing.” News from university campuses around the world certainly suggests the development of electrical implants is gathering pace. In February, the University of British Columbia proved that electrical implants could be used to offset the invisible but debilitating effects of spinal injury. Isaac Darrel, injured in a diving accident, found that epidural stimulation via surgically implanted electrodes was able to control his usually fluctuating blood pressure. Problems with bladder and bowel function were also alleviated. Last October,

the University of Louisville’s Kentucky Spinal Cord Injury Research Center credited their spinal cord epidural stimulation (scES) technique with helping to restore voluntary movement in a paralysed man’s legs. Many other similar stories have been shared with the world in recent years, although the technology remains experimental. Graham is encouraged by what he sees and believes current technologies could pave the way for implanted treatments ahead of their eventual breakthrough. “If electrical implant technology is 10 to 15 years from being available, then to have an exoskeleton now allows your body to be

technology

conditioned to be able to take advantage of that future technology.” This will be particularly beneficial for young children unfortunate enough to suffer serious injury in their early years, Graham believes. Exoskeleton suits for spinally injured children are currently in development, representing a major improvement on tradition devices like callipers. They help to get young users on their feet, therefore giving them the weight bearing activity needed to develop ball and socket joints naturally. “It means that those young people with spinal cord injuries now will have normal hip joints to allow them to walk in 15 or so years when the electrical technology is totally developed and has become an outpatient procedure. “Exoskeletons may disappear at some point because we’ve replaced them with electrical implants which do the work of the spinal cord that isn’t being done due to the injury. That said, some spinal cord injuries are so catastrophic, for example when soldiers get shot in the back and have obliterated so much nervous material that potentially even electrical devices aren’t going to be able to bridge that gap. So perhaps there will always be a case for exoskeletons.” Aside from exoskeletons and VR, lesser spotted technologies are helping the spinally injured to recover – and could actually prevent spinal injuries. Balance training, delivered through a machine called the Balance Tutor, enables users to prepare for those slips, trips and falls that cause and intensify injuries. “The cost of people falling to the NHS is £2bn per year, making it the single biggest dent in its finances. We need to learn to react to unexpected events that cause falls.” Falls are also the cause of 30 to 40 per cent of all spinal cord injuries – according to various studies. This is a rising number in the UK, a nation with an increasingly active, ageing population. Graham’s is the only clinic in the UK with a Balance Tutor machine. To his clients it is a rehab tool which can also prevent escalating problems for people with spinal injuries, and other conditions including neurological diseases and stroke. He also believes it could be used to help people who are vulnerable to a fall, perhaps as they age, to steel themselves against potential accidents.

“It’s like riding on the tube, standing without a handrail when it's throwing you about a bit. The treadmill changes direction, forcing you to balance as the belt moves backwards and forwards, or the motion platform it’s mounted on moves left and right.” With users in a safety harness, the device recreates what physios call ‘perturbations’ – those unforeseen changes and threats; a wet kitchen floor or an icy pavement, for example. “If someone had an incomplete spinal cord injury, on their feet their biggest fear is falling or losing balance. The typical therapy approach is to throw and catch balls with the client on the treadmill, push and shove them or stand them on a board that rocks. But that is all cortically driven. It all comes from the brain trying not to fall over. You are reacting to expected events and that’s different neuro-circuitry from learning to cope with an unexpected event. “We use it for people with spinal cord injury and stroke, who are walking but not necessarily functioning at the level they could be because of their fear of losing balance.” It also serves sports people with ligament injuries and people with chronic back pain who need to retrain tiny back muscles via very small perturbations on the device. But Graham sees much wider scope for the technology, and is hopeful of proving its worth, through pilot schemes, to the NHS. “We think this device in an NHS environment could make a massive difference to that £2bna-year falls cost. "Everyone who has their first fall could go to a fall centre and use this device to re-educate their balance, and protect them from a second fall. Or you could have a screening process where, when you're 65, your GP tests your balance. Those at risk of their first fall could then have a number of sessions on this device to pep up their balance to reduce that risk. If you save a few hundred million, that’s money available for exoskeletons and everyday NHS care.” Graham hopes a privately funded pilot will generate the results needed for a full-scale feasibility test in the NHS. With his help, balance trainers and exoskeletons may well be coming to a spinal injury ward near you soon.

Legal view, by Cathy Leech, partner at Irwin Mitchell in Manchester In the field of high tech equipment and rehabilitation the world opens up to those spinal cord injured clients who have a knowledgeable solicitor and access to funds. It is astronomically expensive, but it is also an opportunity to make our clients’ rehabilitation the best it can be. We will help clients, faced with living with a lifechanging injury, by providing access to specialist expert professionals and to compensation on an interim basis to pay for it. These specialists will set up a bespoke training programme for clients and let them test out different robotic suits or FES equipment and find their optimal solution. It takes commitment to work on regular physio and to maximise physical ability, but many of our clients are not just willing but dedicated to that hard work. One of my current clients wants to use an exoskeleton to be able to stand in the kitchen and wash up (hands free which he cannot do on crutches). Others talk about the benefit of being at eye level whether to walk down the aisle for a wedding or to stand in a pub at the bar with mates. Then there are exceptional people like Claire Lomas out there walking marathons and inspiring SCI people in their hundreds. It is not just an end in itself to have access to this hugely expensive equipment. It is the physical and psychological benefit of knowing you are working your body in an optimal fashion because, as Jon Graham says, who knows what future technology will become available and it is quite clear that the stronger the body, the better the chances are that you can benefit from it. As their solicitor, we facilitate this rehab and it is an absolute privilege to watch our clients benefit from advances in technology we could not have imagined a decade ago.

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Why tech access is a BASIC right Without a legal case win behind them, people with spinal injuries may find access to the latest rehab tech beyond their means. Being unemployed, perhaps as a direct result of the injury, makes it especially challenging to benefit from innovative equipment not provided in the NHS. This is where BASIC, the Brain and Spinal Injury Centre, can step in. The charity, based in Salford, is home to advanced virtual reality technology which was originally designed for the Israeli army. Via self-referrals, people with brain and spinal injuries can access it for free, availability pending. BASIC also takes professional referrals at a commercial rate, which helps to fund the ongoing work of the charity. CEO Wendy Edge says: “Our users have usually been discharged, most don’t have any compensation and the majority don’t have spare resources to pay for care. They may have had to give up their job and be reliant on benefits. We raise funds so that we can cover their rehabilitation.” And the formula seems to work, even years after the original incident or injury. “For example, we had two people come to us who had had strokes over 30 years ago. They actually made progress, improving their balance and walking, which shows if you put

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people in the right environment, because of brain plasticity, it can rewire.” In 2015, following Wendy’s fact-finding mission to Tel Aviv, BASIC invested around £500,000 in the Computer Assisted Rehabilitation Environment (CAREN) system. It puts people at the centre of a life-sized video game, forcing them to use atrophied muscles and teaching the basic skills necessary to recover faster from brain and spinal injuries and other disorders. Movement is analysed in real time, providing immediate feedback to therapists and the patient. Underlying software computes body movement in 300 muscle elements. Ultimately, it offers exposure to physical environments without putting patients in danger. “It has made a massive difference to people who use it, enabling us to take their recovery much further than we could

previously,” says Wendy. “It puts people in real-world scenarios; they can ski, drive through New York, play rugby or walk through the countryside. All the evidence suggests it speeds up their recovery, and improves their motivation. People often disengage from rehab because it’s boring or they are depressed but this equipment encourages them to push themselves in a way they wouldn’t otherwise do in the outside world.” At the last count, BASIC helped around 50 people annually to get back into employment through its various services, including the CAREN. To ensure the impact of the technology doesn’t fade, the charity is challenging PhD students to develop new virtual reality applications for the technology – adding to the 28 existing scenarios it offers. See more at www.basiccharity.org.uk.

Publications that

make a lasting impression A s p e c t p r o d u c e s … B ro c h u re s t h at at t ra c t c u s t o m e r s a n d i nve s t o r s // I m p a c t f u l a n d e n g a g i n g a n n u a l re p o r t s // M a g a z i n e s d e s i g n e d t o re i nv i g o rat e e m p l o ye e s a n d s t a ke h o l d e r s // D e t a i l e d , b ut u n d e r s t a n d ab l e , w h i t e p a p e r s // A dve r t o r i a l f e at u re s fo r t ra d e s a n d n at i o n a l s // W e b c o n t e n t i n fo r m e d b y s e a rc h s c i e n c e

www.aspectpublishing.co.uk // editor@aspectpublishing.co.uk

INJECT THE ‘WOW FACTOR’ INTO YOUR PUBLICATIONS

interview

g n l i Rol very o c e r

traumatic brain injury put street skater Rob Glanville’s life in a spin – but inspired a campaign to save others from the same fate, writes Andrew Mernin.

Skating fanatic Rob Glanville’s lifechanging injury wasn’t the result of some perilous stunt at the outer limits of his ability. In fact, the manoeuvre that sent him hurtling down his own neuro-rehab pathway was so simple to him, he could practically have done it blindfolded. The accident happened in 2015 on a Hammersmith pavement. Rob, then 35, was out indulging his life’s passion that had been with him since he got his first pair of street skates at age eight. His other great hobby – moviemaking – was also

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in tow that day. Rob was producing the latest of his popular skating videos to be shared on the web. “I was doing a trick that was well within me. I’d even already done the trick and was just repeating it to get a better video of it.” This ‘wall-ride’ – jumping with both feet on a wall while skating along it at speed – sounds daunting to a non-skater. For a rolling veteran

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With a helmet you can push yourself further, and push the sport further

like Rob, however, it’s bread and butter. “After the second time of doing it, I was rolling away backwards and a brick that was poking out of a wall at head height hit me in the back of the head. It knocked me out and I smashed my head into the pavement.” Without a helmet, his head took the full force of the brick and the concrete. He suffered a seizure on the pavement. Inside his skull, heavy bleeding and clotting were unfolding. He was rushed to St Mary’s Intensive Care Unit in Paddington for a life-saving craniotomy. Meanwhile his parents were told he may not make it. News of the accident was “the phone call I’d always expected,” his dad later told the BBC. Rob had been a pioneer of street skating, winning and judging prestigious competitions. He’d even been featured in a well-known American skate magazine. He’d never worn a helmet, however. After several weeks of intensive rehab at St Helier Hospital, Rob was admitted to the Wolfson Neurorehabilitation Centre in London’s Queen Mary’s Hospital. This entire horrific journey would have been prevented by wearing a helmet, he believes. And so, while still dealing with the challenges of brain injury recovery, he was eventually discharged with a plan for change. The result is Rob’s new charity and campaigning initiative, Lids Save Lives. He says: “There is quite a negative attitude towards wearing a helmet. Skating is about selfexpression and helmets can feel limiting so a lot of skaters will only wear them if they have to or are forced to by a skate park or in a competition. People say they feel limited by them. But I see the opposite. Having the protection of a helmet means you can push yourself further and, in doing so, push the sport further. Helmets should be seen as a positive, not a negative. “I don’t want to demonise or insult anyone who skates without a helmet as I did it for years; but I’ve learnt the hard way through having a brain injury.” Now, of course, Rob is never lid-less when on wheels. “I don’t even notice I’m wearing it. Actually, it’s more noticeable when I’m not wearing it.

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interview Below: Rob Glanville visiting a skate park in London

"Without it, I’d feel concerned that I could fall and hit my head and do some damage. It scares me to not to wear one, which is the opposite of how a lot of my friends feel unfortunately.” He is hopeful of changing attitudes, however. “I’m trying to change that perspective, especially in younger generations, not just for inline skating but also for the other extreme sports like skateboarding and BMXing. Also, I see a lot of kids on scooters that should be wearing helmets. I’d love to have a positive influence on them and the next generation so they can make good decisions and protect themselves.” Given the risks of extreme sports, Rob’s argument that helmets should be worn at all times in every discipline shouldn’t be too much of a hard sell – despite deep-seated attitudes about how uncool or restrictive they may be. A 2014 study based on data spanning over

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a decade and involving over four million patients, found that 11.3 per cent of all extreme sports injuries are in the head or neck. Of those, 83 per cent were head injuries. While street skating was not included in the research, its sporting cousin, skateboarding, had the highest incidence of head and neck injuries, ahead of snowboarding and skiing. The study, led by Western Michigan University School of Medicine, reviewed 2000-2011 National Electronic Injury Surveillance System (NEISS) data for seven popular sports featured in the Winter and Summer X Games. In evaluating what difference helmets can make, it is the cycling world, rather than extreme sports, where most research comes from. Some argue that cycle helmets do not protect enough. Others say they encourage riders to be riskier, perhaps by riding faster or taking their BMX over bigger jumps. Yet the evidence for wearing them far outweighs the few arguments against. A US study in 2016 found that cycle helmets cut the risk of severe TBI in half in the event of a head injury. Researchers analysed records of 6,267 people treated in 2012 for bleeding inside the skull after a bicycle accident.

More recently, scientists at the University of New South Wales, Australia, reported that helmets reduce the risks of serious head injury by 70 per cent. The research published in 2016, was based on data from over 40 studies, collectively involving more than 64,000 cyclists. Behind the numbers are people like Rob, who can give a first-hand account of the dangers of not wearing a helmet at all. Having lived to tell the tale, he is eager to warn others and has big plans for his charity. The organisation will seek to promote helmet use in extreme sports through schools and youth group events. “We want young people to be aware of the risks to mitigate them and make good decisions.” But its activities will go further than that.

interview Below: Rob Glanville in action

“I’m hoping to work with advocates for helmet use in other dangerous sports. For example, there are people like T.J. Lavin, the American BMX rider who suffered a brain injury like mine. He now actively promotes helmets and won’t let anyone in his park ride without them, which is great. I would love to see advocates such as him helping to promote helmets here in the UK and being positive role models for the next generation. I’d like to make documentaries about them and change the misconception that helmets aren’t cool.” Another dimension of Lids Save Lives, was inspired by Rob’s experiences of neuro-rehab. “One of the goals in the longer term is to set up a sporting academy that enables people with TBI to re-engage with the sports they

played before their injury to help with their rehabilitation. This helped me tremendously in my rehab and I’m sure I’m not the only person who was sporting before their TBI.” Staff at the Wolfson recognised that putting his skates back on would be pivotal to Rob’s recovery. And the prospect of skating again was certainly a motivator, amid the daily grind of rehab. After the gruelling process of relearning to walk, talk and eat, the thought of a rolling return was like rocket fuel to Rob’s morale. “It has always been my passion so I wanted to get back to doing it as soon as possible. The rehab unit saw how beneficial it would be for

me and got me doing it again, for which I’m very grateful.” After tentatively skating indoors, he eventually battled his way back to London’s concrete playground. This, he says, has boosted his social, spiritual and physical wellbeing. “My consultant said skating was part of my recovery because it was part of my life before the accident. They got me skating in the rehab unit, and working in the gym with two physios, and encouraged me to skate again, which was brilliant.” Despite progress made so far – and his subsequent return to employment in the civil

The prospect of skating again was certainly a motivator in rehab service – he admits recovering lost skills is an uphill push. “I still have reduced function in the left side of my body. Every day I realise my left hand doesn’t work properly, which is very frustrating. I am still in the early stages of brain injury recovery and have a long way to go. “In terms of skating, I haven’t achieved the level I was at before I had the accident. It’s a very high bar to hit but I believe if I dedicate myself to it and stay committed I’ll be able to get back there.” Find details of Lids Save Lives on Facebook.

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events

Dates for your diary sep 18 / 11-12

UK stroke research meeting. Offering insights on the latest developments. Sessions on stroke imaging, acute ischaemic stroke & reperfusion injury, new technologies in stroke recovery, heart & brain, and inflammation & stroke, as well as sessions on research mentorship and career development. See ukabif.org.uk for details.

Square pegs, round holes – obstacles to person-centred support. Hosted by the Scottish Head Injury Forum. Best Western Queen’s Hotel, Dundee. Details TBA. See ukabif.org.uk for updates.

20-21

An academic and clinical symposium in cognitive communication disorders. Homerton University Hospital, Hackney, London. See ukabif.org.uk for details.

26-28

Third international conference on paediatric acquired brain injury; promoting well-being in children and young people with ABI and their families. The conference focuses on the development of innovative treatments, rehabilitation programmes, support mechanisms and ways to improve the lives and potential of young people affected by brain injury. Riddel Hall, Queens University, Belfast. See www.internationalbrain.org for details. Email congress@internationalbrain. org for more info.

Motivational Interviewing in Brain Injury Rehabilitation: Advancing your practice. Anthony Gold Counting House, London Bridge, London. See www.abisolutions.org.uk for details.

Case Management Society UK Celebration & Awards Lunch. A celebration of the invaluable work of case managers and valued industry partners in a constantly changing, but growing, industry. Radisson Blu Edwardian Hotel, Bloomsbury Street, London. Call 0333 2070755 or email info@cmsuk.org for bookings.

oct 18 / 6-10

Level 1 course in proprioceptive neuromuscular facilitation P.N.F – The Royal Buckinghamshire Hospital. Relevant to physiotherapists and occupational therapists with an interest in neurology, orthopaedics and sports. The Royal Buckinghamshire Hospital, Buckingham Road, Aylesbury, Buckinghamshire. To apply contact Karen Barnard on karen.barnard@royalbucks.co.uk or 01296 678800.

To list your event in NR Times contact chloe@aspectpublishing.co.uk Please check with contacts beforehand that arrangements haven’t changed. Event organisers are also asked to notify us at the above address of any changes or cancellations.

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events

11-12

10 -11

17-21

Close encounters of a pain kind. An exploration into the issues of clients experiencing chronic pain with a focus on MDT approaches to pain management, fibromyalgia, causation aspects of pain, headaches, complex regional pain syndrome and much more. See details on www.abisolutions.org.uk.

Masterclass in neuro technology. Hosted by Hobbs Rehabilitation and led by experienced clinicians who will facilitate masterclasses with patients. A hands-on approach which will link clinical reasoning to optimise the use and potential benefits of neuro technology. This event is suitable for practitioners, providers, case managers and other professionals working in the field of neuro rehabilitation. Holiday Inn, Winchester. Email courses@hobbsrehabilitation.co.uk for an application form.

Headway Deputy Conference 2018. Coin Street Conference Centre, London. Email fundraising@headway. org.uk for details.

Autumn neuro-rehab retreat; the breathing movement. A mind-body Interventions experiential retreat for neuro-rehab professionals and holistic therapists. Charney Manor Conference and Retreat Centre, Charney Bassett, Wantage. For more info contact Dr Priyanka Pradhan at drpriyankapradhan@gmail.com.

Level 1 course in proprioceptive neuromuscular facilitation P.N.F â&#x20AC;&#x201C; The Royal Buckinghamshire Hospital. Relevant to physiotherapists and occupational therapists with an interest in neurology, orthopaedics and sports. The Royal Buckinghamshire Hospital, Buckingham Road, Aylesbury, Buckinghamshire. To apply contact Karen Barnard on karen.barnard@royalbucks.co.uk or 01296 678800.

nov 18 / 26

Neurobehavioural Disability after Acquired Brain Injury: Recent Innovations in Clinical Practice and Delivery.

The third annual conference hosted by Elysium Neurological in partnership with Swansea University bringing together leading experts who will share insights on the latest clinical innovations and cutting-edge developments in the management of challenging behaviour following brain injury. Swansea Marriott Hotel, Swansea. Find the event on eventbright.com. Enquiries should be sent to claire.williams@swansea.ac.uk.

dec 18 / 3

Encephalitis Conference 2018: The go-to conference for health professionals wanting to expand their understanding of encephalitis and to learn the latest research updates. The only event in the world dedicated exclusively to encephalitis, bringing together professionals with in-depth expertise and knowledge, ranging from etiology, pathogenesis, and diagnosis, through to treatment, recovery and rehabilitation of people affected by encephalitis. Keynote speakers include Dr Josep Dalmau and Dr Susan Hills. London, UK. Full details available via www.encephalitis.info/ encephalitis-conference2018.

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clocking off

Proud as punch Knot recommended The humble tie has had it tough in recent years. Although many still consider it a workplace essential, the rise of open collared corporate bosses and t-shirted tech entrepreneurs has sent it into retreat. But just when things were looking up – with England football manager Gareth Southgate emerging as a celebrated ally through his impeccable smartness – comes more bad news. Apparently ties restrict blood flow to the brain. By compressing the veins in the neck, tie-wearers could be pushing blood into the skull and creating an unhealthy build-up of pressure, scientists say. The difference isn't enough to be a serious health risk to most people, researchers from University Hospital Schleswig-Holstein in Germany say. It may, however, cause problems for groups that are already at risk from blood pressure issues, like smokers or the elderly. Cerebral blood flow was found to drop by an average of 7.5 per cent in men wearing a tie, with no drop reported in a control group. Phase two of the research will test the impact of click-on ties, perhaps.

Chantell Calderbank didn’t take her Parkinson’s diagnosis lying down. Instead the 42-year-old mum-of-two from Manchester fought back, quite literally. Armed with the knowledge that exercising 2.5 hours a week can slow the condition’s progress, she hit the boxing ring, and has barely stopped swinging since. “I already feel better – I’ve lost some weight and my arm strength has really improved,” she told a national newspaper recently. Boxing reportedly strengthens everything the disease weakens - balance, motor skills, movement and sensory function – and is increasingly popular among people with Parkinson’s. Bravo to everyone going toeto-toe with what can be a wicked opponent.

Age just a number? A South Korean scientist has discovered an element of truth in the old adage that you're only as old as you feel. Jeanyung Chey, of the Seoul National University in Korea, investigated the link between subjective and real brain age. Sixty-eight senior citizens had their brains scanned via MRI, and also answered questions about whether they felt younger, older or just as old as their biological age. "We found that people who feel younger have the structural characteristics of a younger brain," said Chey. Those who said they felt younger than their age scored better on a memory test and tended to have increased grey matter volume in the inferior frontal gyrus and the superior temporal gyrus —areas associated with language, speech and sound.

New culture mag launched

As keen advocates for independent print media, we were delighted to see a brain injury magazine with a difference coming into the world recently. Headway East London has launched a culture magazine put together by brain injury survivors. Matter promises to embrace the “good, bad and ugly” of life through confessionals, fiction, art, music, philosophy, food and more. Headway’s Laura Owens said: “For contributors who have survived brain injuries, this may mark the first time they have publicly shared their experiences in writing, or been given creative responsibilities since their injury. “For others, it is an opportunity to share new talents and interests developed at Headway despite profound challenges.” We wish it every success.

Campus champ As the world’s sporting authorities struggle to get to grips with concussion, a student in Scotland may well have found a solution where others have failed. Euan Bowen, 25, a fourth-year product design student at Edinburgh Napier, is the creator of rugby product HIT. The device can be attached to the laces of an existing scrum cap and is designed to light up when a player receives a high impact hit during a game. Although only a prototype, it has already caught the attention of rugby media and hopes are high that it could offer a viable way of better protecting players.

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out of the 4 white walls A new era in Neurorehabilitation:

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The UKâ&#x20AC;&#x2122;s only specialist Chambers run by neurological rehabilitation professionals

Need a court report by a medico-legal expert in brain, spinal cord or peripheral nerve injury? Our highly experienced medico-legal expert clinicians are mentored by Professor Mike Barnes and Dr Edmund Bonikowski, who between them have undertaken over 4,000 assessments of clients in personal injury and clinical negligence cases over the past 20 years.

Did you know we offer in house training for solicitors on the variety of brain injury?

So often you attend a conference with a couple of good talks and then a couple that are easily forgotten. Your talks were relevant and clearly showed your expertise. A solicitor delegate at our training day in October 2017

In addition to neuro rehab experts we have Neurologists, Neuropsychiatrists, Neuropsychologists and a range of neuro therapists. We offer clinical supervision of community rehabilitation programmes

Instruct us and find out more: nnrc.org.uk

enquiries@nnrc.org.uk

0191 258 3338

@RehabChambers