NR Times Q4 2018 edition

XXXX ISSUE 8 Q4 2018

LIGHT FANTASTIC Revolutionary treatment for brain injured babies TICKING TIMEBOMB The young people living in fear after funding cut

QUARTERLY

HANDLE WITH CARE

Stopping self-destruction in its tracks ENDANGERED SPECIES Why vital rehab role must be protected

ON THE RIGHT PATH? Exposing the job satisfaction spectrum

MY LIFE IN VR Tech takes injury empathy to new levels NRTIMES 01

Support in every area

Supporting a child or young person with brain injury is just part of the story.

Our provision of community neuropsychological rehabilitation to parents, siblings, schools and the wider support network, helps provide good outcomes for all.

recolo.co.uk

WELCOME

EDITOR'S NOTE

Welcome to NR Times, your quarterly update on neuro-rehab issues and developments affecting professionals and patients.

NASA’s recent Mars mission caught the attention of the world’s press. But just as the robot probe was landing in the red dust, another voyage of discovery into a strange world was concluding. It didn’t quite match the ripples made by NASA, but its impact could be felt by those pioneering new neurological treatments. For Australian neuroscientist George Paxinos – one of the world’s leading brain mapping experts – believes he has found a new region of the brain. It has been named the endorestiform nucleus and is found near the brain-spinal cord junction. It is located within the inferior cerebellar peduncle, an area that integrates sensory and motor information to refine posture, balance and fine motor movements.

The fact that it has remained undiscovered for so long perhaps highlights just how little we still know about the inner workings of the brain.

It is also indicative of the quickening advance of brain exploration technologies; its existence was confirmed thanks to improvements in staining and imaging techniques.

Paxinos’ findings cap 2018 as a year of strong progress in the push to better understand the brain and its related conditions. In June, scientists identified the properties of metals in the brain involved in Alzheimer’s. Researchers characterised iron species associated with the formulation of abnormal clusters of proteins in the brain that can play a part in mental deterioration in Alzheimer’s patients. Understanding these metals could pave the way for future therapies. The study was made possible through advanced x-ray techniques.

The search for a cure for Huntington’s has also been stepped up this year. Last December, scientists were able to correct the defect that causes the disease – using injected spinal fluid to lower levels of toxic brain proteins. Since then, efforts have been

focused on developing readily available treatments.

A major step forward this year is the engineering of the world’s first pigs with Huntington’s. Generating the disease in a large mammal is thought to be pivotal to finding a cure. Where some findings in mice do not translate in humans, pigs have shown a number of similarities. Crucially, the project will allow gene-editing techniques to be tested against the disease.

From a spinal perspective, meanwhile, 2018’s biggest breakthrough was undoubtedly the use of wireless implants to enable paralysed patients to walk again. In the Swiss study, implants regenerated and remapped nerves in damaged spines, restoring voluntary walking in patients previously restricted to wheelchairs. Hopefully 2019 brings further progress for this line of investigation – and the many other exciting research projects that could shape the lives of neuro-rehab patients in the future.

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

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NEWS The latest from the world of neuro-rehab.

28

10

TIME TO CHANGE Harsh realities of rehab laid bare

LIFE IN VR Technology aims to take brain injury empathy to new levels

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LIGHT FANTASTIC Revolutionary treatment for brain injured babies

36 04

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RIGHT PATH? Career contentedness in brain injury care

CONTENTS

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FATIGUE IN FOCUS How to overcome this major barrier to good rehab

44

ROLES APART Why patients are missing out on physician-led care

49

TICKING TIMEBOMB NHS cuts raise stroke fears

COVER STORY

24 Suicide and brain injury: the search for answers

52

Experts look to the future of neuro-rehab in the UK

56

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

58

CLOCKING OFF Notes from the sidelines of neuro-rehab

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NEWS ANALYSIS Promising stroke report does not tell full story

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ANALYSIS News of a downward slide in stroke incidents is tempered with a growing risk to young people, writes Andrew Mernin.

News of a 43 per cent fall in stroke incidents since 2000 made headlines in October. A report from King’s College London suggested that the number of people affected by stroke is falling, but people are having strokes at a younger age.

It also reported that there has only been a small relative decrease in stroke rates in the black population.

It said this may be due to higher average levels in black patients of high blood pressure and diabetes, both of which can increase the risk of stroke.

Researchers analysed data from the South London Stroke Register, looking particularly at patients who had an ischaemic stroke, which is caused by a blood clot, between 2000 and 2015.

The study also found that, across the population, patients who had strokes tended to have them younger, with a decrease in the average age at first stroke from 72.3 in 20002003, to 69.3 in 2012-2015.

The team attributes the overall reduced rate to a range of factors including improved prevention measures such as medication like statins.

Reduced rates of smoking and drinking are also thought to be an important factor as making these lifestyle changes can significantly lower people’s risk of stroke.

Experienced stroke consultant Liz Iveson, based at Woodlands Neurological Centre in York, warns that headlines announcing a 43 per cent plummet in stroke numbers may be misleading.

However, she also believes the South London Stroke register from which the data was compiled, is fairly representative of the wider population.

“The lesser reduction in the black population is well known. The black population statistically has a higher incidence of hypertension and small vessel stroke

and an increase in obesity.

“Overall, the incidence of ischaemic stroke has fallen but the number of people hospitalised for stroke aged between 15-44 years has risen significantly in recent years. The rates for hospitalisation for stroke in older adults has fallen. This may be in part due to increased awareness and detection of stroke in younger people too.

“There are many hypotheses and pieces of evidence around why the average age of people with stroke has fallen overall. There is an increase in stroke risk factors in the young the number of women under 45 years old who have three to five risk factors for stroke has doubled recently.

"Rates of all the ‘traditional’ risk factors one used to associate with older age are also all increasing.

“High blood pressure and smoking are the main factors associated with the increased risk but the increase in diabetes, obesity, high cholesterol and binge drinking all contribute.”

Iveson also sees flaws in the UK’s screening system which may be contributing to a

The big push is to emphasise that there is no such thing as borderline blood pressure. It is either high or it isn't

lowering of the average stroke age.

She says: “Adults under 45 don’t tend to go to screening programmes or get their blood pressure or cholesterol checked. Also, if high blood pressure is detected it is often left untreated for longer compared to older patients. The ‘go away, do some exercise, reduce stress, eat more fruit and come back approach’ is sometimes not followed up in busy individuals.

“Also, anecdotally, there is a sense that borderline high blood pressure is not acted on. Many patients I see after a stroke or mini stroke have been told for years their blood pressure is a ‘little high’ but not too bad.

"The big push is to try and emphasise that there’s no such thing as ‘borderline blood pressure’. It is either high or it isn’t.

"The guidelines are clear enough numbers-wise.”

Iveson also points to other risk factors such as lack of sleep and stress, which are increasingly being researched.

“People under 50 tend to work longer hours, have more perceived stress and poor sleep hygiene compared to the older population.

The increase in shift working patterns and use of electronic gadgets are thought not to help with this either.

“The FAST campaign is still valid however there is some evidence that young people are less familiar with stroke symptoms and the need for urgent attention to ‘act fast’.”

The well-publicised World Stroke Day initiative on 29th October went some way to raising stroke awareness in younger people.

Charities, care providers and even national governments marked the day by turning the spotlight on the issue. From Luxembourg – where the health ministry reported the worrying fact that a quarter of all strokes there are in the under 65s – to Hyderabad, where doctors warned that one in seven stroke victims are under 45, stroke

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ANALYSIS dominated headlines around the world for one day at least.

As well as greater awareness, developing better treatments is clearly key to managing stroke in all age groups.

Certainly, improved preventative measures are playing their part in lowering overall stroke numbers, says Iveson.

“There is an increased uptake in statin use and in prescribing statins. They have so much evidence behind them and the newer ones are well tolerated. Simvastatin was the main original statin but about one in five people got muscle aches and stopped the statin hence the bad press they used to have.

“But generally, I do think GPs are more aware about actively lowering cholesterol now. Statins are used so much in cardiology, diabetes, vascular and renal medicine as well as stroke, that the prescribing of them doesn’t have the same negative connotations as it used to have.”

In the longer term, inter-generational changes in drinking habits may help to limit stroke risk in younger people.

A study published in October involving nearly 10,000 young people in the UK found that the proportion of 16- to 24-year-olds who say they never drink alcohol rose from 18 per cent in 2005 to 29 per cent in 2015. The study also found that young people who did drink alcohol were drinking less nowadays and that binge drinking rates were falling.

The researchers said the drop in numbers of young people drinking suggested a shift in attitudes towards alcohol. They say this could be due to increased awareness of the health risks of alcohol, as well as changes in the way young people spend their leisure time.

The research was carried out by University College London.

Iveson says: “It is really interesting thinking about the future as there is an increased trend in people aged 45-65 years drinking every day and therefore increasing their risk of stroke but there is a significant difference

coming through in behaviour in the younger millennial generation.

“They are less likely to smoke, drink and take drugs and also their lifestyle choices are different. They are much more aware of healthy eating, appearance and exercise - and put it into practice. Meditation and mindfulness has been shown to reduce stroke risk and blood pressure too. I do think this change in lifestyle choices will have a significant impact on stroke incidence in the future. The only caution with this is again related to perceived stress and the increase in mental health issues in the younger generation. It is unclear how much this will impact.”

Meanwhile, in terms of emerging findings on stroke risk, a new study suggests that iron levels may be a factor.

Imperial College London found that people with higher iron levels may be at greater risk of certain types of stroke.

The researchers analysed genetic data from more than 48,000 people and found that higher levels of iron are associated with an elevated risk of a cardioembolic type of stroke.

A statistical method was used to calculate the impact of genetics on people’s iron status, focusing on three points in the genome where a single ‘letter’ difference in the DNA can slightly increase or reduce a person’s iron status.

These findings follow previous research which suggested that iron may protect against stroke and coronary artery disease. “This result was unexpected. It was previously thought higher iron levels might protect against stroke, but this study investigates this further to find that iron may actually increase the risk of some types of stroke,” said Dr Dipender Gill, lead author of the study.

The researchers have cautioned that this is an early stage finding and stated that they don’t recommend that patients at risk of stroke reduce their iron intake, as it has many crucial roles in the body.

Dr Gill said that further research is needed to investigate why iron may lead to increased risk of stroke. “Iron is a vital nutrient, essential for a number of biological processes in the body, including transporting oxygen.

"However, previous research has suggested that in some cases iron can actually trigger blood to form a clot. This now needs further investigation.”

In another recent stroke study, Swedish researchers have evidenced a correlation between general fitness and reduced risk of severe stroke.

The study of more than 900 stroke survivors found that fitter people were twice as likely as sedentary people to have a mild stroke rather than a severe one.

The benefit was seen among older adults who walked for an average of 35 minutes a day.

“Stay physically active. Keep on walking,” advised senior researcher Dr Katharina Sunnerhagen.

The findings do not prove that exercise, itself, was responsible, said Sunnerhagen, a professor at the University of Gothenburg, in Sweden.

But she said it is clear that regular activity has a range of health benefits – and less severe strokes may be one of them.

The findings are based on data from 925 older adults treated for a stroke at the same hospital. When the patients started poststroke rehab, they were asked about their usual exercise habits before the stroke.

Overall, 48 per cent said they’d been active.

Most of the patients had suffered a mild stroke, based on tests of their movement, speech and other abilities when they were hospitalised.

But physically active people were particularly likely to have a mild stroke: 85 to 89 per cent did, versus 73 per cent of sedentary people, the findings showed.

There could, of course, be other differences between physically active and inactive seniors, Sunnerhagen said.

Page 49: How one hidden stroke risk factor is leaving patients out of pocket and living in fear.

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CASE STUDY sponsored feature

How Wayne fought back from the brink Exemplar’s Helen McGowan recounts one patient’s journey from end of life care to long-term rehabilitation.

Exemplar care homes provide a home for a range of adults with complex needs and offer both end of life and long-term care for their service users. There can sometimes be the small ‘miracles’ for some families where their loved ones are placed in Exemplar homes for end of life care and they defeat the odds to live longer, more enriched lives than they could have anticipated.

Wayne (pictured with an Exemplar team member) is one such example. In April 2016 he was assessed for end of life care following a brain injury. He was expected to have less than 12 weeks to live and when he first met the Exemplar team he was laid horizontal in his hospital bed with no meaningful communication taking place.

However, following his admission to Exemplar’s Dearnevale care home, staff

realised that there was greater potential for Wayne’s recovery than previously thought.

Wayne was desperate to communicate with staff and tried using different sound pitches to get his message across.

It quickly became apparent that rather than be fed via PEG, he was requesting food and drink. Keen to support Wayne’s desire to choose his meals, the staff worked with the speech and language teams to improve their communication channels with him, while liaising with the community dietitian to re-introduce food and drink safely. Following relevant assessments and encouragement, the team worked tirelessly with Wayne to regain his independence with food.

In tandem with the speech and language services, Exemplar staff worked with the continence service to improve Wayne’s quality

of life in that area too. Over time, the team were able to remove Wayne’s catheter. It was a slow process but an important milestone for Wayne in regaining some of his independence.

Aside from providing support to help Wayne have independence with his diet and toileting, the in-house physio team looked to improve his sitting balance and core strength. He had been laid horizontal for a considerable time prior to his admission to the home and this had affected his ability to socialise with others outside of his room. Following a programme from the physio team, and determination on Wayne’s part, Wayne is now able to move around the home in a wheelchair and he spends very little time in his bed.

Socially, he communicates using assistive technology, as well as his remaining verbal communication. He is well-known at the home for being a bit of a joker and thrives from socialising with others at the home. He is always the first on karaoke to sing his version of ‘You’ll Never Walk Alone’ and has come incredibly far from the unwell figure requiring end of life care that the team met in hospital.

Wayne’s initial prognosis to that of today is completely different and thanks to the Dearnevale team understanding the nuances of his initial attempts at communication, they have been able to provide the relevant support to improve his dignity in care on a day-to-day, long term basis.

Helen McGowan is home manager of Dearnevale, an Exemplar care home rated outstanding by the CQC. In addition to traditional complex nursing care packages for people with brain injuries and complex neurodisabilities, Helen also runs an Exemplar innovation known as OneCare, which creates specially adapted individual houses and flats for service users who do not require the wrap-around care of a home, but still require support for their nursing needs.

For referrals call 01709 565700 or email referrals@exemplarhc.com.

See www.exemplarhc.com for more info.

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ANALYSIS

Neuro-rehab bed numbers must triple in the UK, report warns 10

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ANALYSIS Paper reveals gaping shortfall in UK rehab services and seeks to navigate a route past multiple brain injury challenges.

The UK’s shortfall of neuro-rehab beds was laid bare recently, as a landmark report on the state of the national approach to brain injury was published.

To truly meet demand, the country needs more than triple the current number of neurorehab beds, according to the report from the All-Party Parliamentary Group on Acquired Brain Injury (ABI).

It estimates that 14,600 neuro-rehab, inpatient beds are needed to meet the annual caseload of around 300,000 ABI admissions.

Currently there are just 4,600.

This is made up of 1,400 non-dedicated rehab beds and 1,800 dedicated ones in the independent sector. Just 1,400 neuro-rehab, in-patient beds exist within the NHS. Since 2013, the number of private sector beds has risen by 700, against a fall of 100 in the NHS. The report states: “Investment in neurorehabilitation, in-patient neurorehabilitation beds and service provision are all inadequate and hugely variable across the UK.” The report also underlines regional disparities in brain injury care provision. Parts of the North, East and South West are shown to have no access to neuro-rehab services, or to be served only by a very sparse network of providers.

Other major concerns, according to the APPG, include a shortage of neuro-rehab personnel and a general lack of understanding of neurorehab’s vital role within healthcare.

Poor delivery of the rehab prescription (RP) system is also scrutinised. That these documents are not made available to all individuals with an ABI is a major concern within neuro-rehab circles – as is the fact

that GPs rarely receive a copy and therefore cannot facilitate access to neuro-rehab services after discharge. The report’s neurorehab recommendations are to: • Make RPs available to all individuals with ABI on discharge from acute care. To have them held by the individual and copies made available to GPs • Conduct a national review of neuro-rehab to ensure provision is adequate and consistent across the UK • Have the government to collate reliable statistics for the number of individuals presenting at A&E with ABI, recording the numbers of people requiring and receiving neuro-rehab care • Significantly increase neuro-rehab beds and professionals so that every trauma centre has a consultant in rehab medicine and individuals with ABI have access to neurorehab • Have cooperation between government departments such as health and work and pensions to review funding for in-patient and community neuro-rehab services.

The paper also makes an excellent case for more funds for neuro-rehab services.

“Neurorehabilitation is one of the most cost-effective interventions available to the NHS… Although individuals with complex needs may require a longer hospital stay, the front-loaded cost of providing early, specialist neurorehabilitation for these individuals is rapidly offset by longer-term savings in the cost of community care, making this a highly cost-efficient intervention.”

The quoted figures should make compelling reading for controllers of NHS purse strings.

Savings made possible through neuro-rehab are estimated at £500 per week per patient, or over £5bn per year for the 300,000 individuals who need such services each year.

The publication was well timed, having been circulated throughout Whitehall just a few weeks before the Chancellor announced news of an NHS funding boost in his autumn Budget. Policymakers charged with allocating the £20.5bn, five-year NHS windfall set out by Phillip Hammond could certainly see healthy returns from investment in neuro-rehab services. Within the brain injury field, the APPG report served as a rallying cry for

Number crunchers provided several eyebrow-raising stats in the APPG report…

1.3 million people are living with traumatic brain injury-related disabilities 956: Number of ABI-related hospital admissions per day, which equates to one every 90 seconds ABI hospital admissions have increased by 10% since 2005/06 Incidence of female head injury has increased by 24% since 2005/06 Men are 1.6 times more likely to be admitted to hospital due to head injury than women 900,000 A&E visits per year are as a result of a traumatic brain injury

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ANALYSIS MPs, professionals and families affected by ABI at the launch of APPG paper.

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ANALYSIS

more action in better handling the nation’s head injury epidemic.

Claire Mills, public affairs manager for Headway, said: “We’re calling on all MPs to look at the report and use their influence to bring about much needed change to availability of rehabilitation, disability benefits, and in so many other areas, for the benefit of their constituents and the country as a whole.”

Richard McKenzie, CEO of private neurorehab provider Christchurch Group, said of the report: “In an area that has been neglected for too long, it’s promising to see that the All-Party Parliamentary Group will be proactively looking to seek improvements in support for those affected by ABI. Early access to neurorehabilitation is essential and key to being able to provide patients with a quality care pathway. Early rehabilitation in a multidisciplinary environment has many benefits for both the patients’ outcomes and for providing a more cost effective

healthcare solution.

“We would wholly support a funding review into investment for in-patient neurorehabilitation beds and service provision across the UK. People that suffer tragedy deserve to be able to maximise their potential and to have as normal a life as possible.”

Care provider Elysium Neurological was similarly eager for the report to make a tangible difference, saying in a company statement: “There should be a significant increase in neurorehabilitation beds and neurorehabilitation professionals, to ensure that individuals with an ABI have access to high quality efficient and effective neurorehabilitation to enable them to reach and if possible exceed their personal goals.”

As well as focusing specifically on neurorehab provision, the report set out key changes needed in relation to education, criminal justice, the welfare benefits system and concussion in sport. Among several education recommendations, there was a

call for all professionals to have a minimum level of awareness of ABI and how it impacts on young learners. An ABI card for under-18s, promoted in schools, hospitals and local education authorities, was also urged.

On criminal justice, the report highlighted the stark statistic that every three minutes someone is admitted to an emergency department with a head injury. If just one in 100 of these victims ends up in prison, this equates to 1,750 people entering the prison system every year, it said. Brain injury screening for people of any age entering the “secure estate” was one of several suggested measures.

Instilling brain injury expertise and awareness into the benefits assessment process was a key thread in the report’s welfare section meanwhile.

On sports-related concussion, the report calls for: • The government to ensure that there is collaborative research to evaluate and

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ANALYSIS improve practical assessment tools, develop objective diagnostic markers and gain a deeper understanding of the recovery process and long term risks of sports-related concussion • An enhanced education campaign to be implemented in schools to improve awareness and understanding of sportsrelated concussion with the support of government departments (such as the departments for Education and Health and Social Care) • Sport, government, and professional clinical bodies to work collaboratively to improve health professionals’ knowledge of concussion management • The NHS to develop better pipelines for the diagnosis and care of sports-related concussion The Rugby Football Union’s medical services director Dr Simon Kemp, who contributed to the report, told NR Times: “While there is a lot we are already doing in rugby around concussion awareness, education, research and prevention, in order to make significant further progress in the key areas outlined

Legal view

By Neil Whiteley Partner / National Head of Serious Injury at Irwin Mitchell LLP The All-Party Parliamentary Group (APPG) report on acquired brain injury and neuro-rehabilitation, A Time for Change, represents one of those, sadly rare, landmark moments on the long

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for concussion in sport then a co-ordinated approach involving non sporting bodies is critical.

“We are fully committed to achieving this and look forward to working collaboratively with government and the professional clinical bodies on concussion.”

It remains to be seen what impact the APPG report has on the UK’s approach to brain injuries.

At the very least, neuro-rehab professionals now have an all-encompassing document setting out the many challenges ahead and reaffirming the value of adequate post-brain injury care provision.

As it also reminds readers, its recommendations must not be ignored or forgotten as has happened previously.

It warns: “In 2001 the parliamentary Health Select Committee published a report ‘Head injury: rehabilitation’ containing over 20 recommendations.

"The Committee examined the availability, organisation and resourcing of rehabilitation services for head-injured adults following medical stabilisation.

drive for a fully co-ordinated and wellfunded approach to supporting people with ABI. Within the past 10 years, we have seen trauma care in the UK make considerable and life-changing strides, and whilst rehab services have developed, NHS and other statutory services have come under considerable strain. As a legal professional who has represented many individual clients with the ability to access private funding after road collisions and other legal actions, I often hear frustrations from colleagues in the NHS and rehabilitation sector about the contrast in opportunities that are available to those with a claim, compared to those without. Whilst completely closing that gap may be too much of an ask in reality, it is very much the organisation and funding of statutory services that accounts for this gap, not

"It also considered rehabilitation services in the hospital and in the community, and looked at the extent to which agencies in the statutory and non- statutory sectors collaborate to provide seamless care.

“Whilst many of the recommendations relating to acute care have been implemented to some extent, the last 17 years have not seen any of the recommendations regarding neurorehabilitation achieve substantial implementation.”

Hopefully this time, the relevant influencers are listening and changes are afoot.

Chris Bryant, the MP chairing the APPG on ABI, certainly seems committed.

He said: “ABI is a hidden epidemic affecting many hundreds of thousands of people.

"It impacts on so many government departments including the Department of Health and Social Care, Department for Work and Pensions, Department for Education and the Ministry of Justice that the government has to work in a co-ordinated and consistent way. The government should bring together a taskforce to address all the issues and recommendations as a matter of urgency.”

the dedication and skill shown by rehab professionals and support workers delivering care at the sharp end.

The excellent APPG report offers a chance for decision makers and politicians to be presented with the reality of what needs to be done, and so hopefully galvanise the debate and focus around some of the key recommendations. For some, the report may not go far enough, there is always more that can be said and each stakeholder group will hope to see their experience and viewpoint reflected – this can be difficult to achieve with limited time and the need to find priorities.

However I believe that this is a moment for the sector to come together and focus on the key points that might make a difference when big decisions come to be made in the future about priorities and resources in the public sector.

PATHWAY PROFILE sponsored feature

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.

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

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

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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Stroke invention is best in Britain

Landmark pay-outs for two catastrophic cases Two baby brain injury incidents have resulted in landmark compensation awards totalling over £50m.

In one case, a six-year-old boy who suffered a catastrophic brain injury shortly after birth received more than £37m.

He had contracted the herpes simplex virus at Watford General Hospital, resulting in a brain fever.

This was not detected or acted upon soon enough, according to his barrister, Henry Witcomb QC. West Hertfordshire Hospitals NHS Trust had previously apologised and agreed to settle his case. What followed was described by the boy's solicitor as the "highest award ever" in a clinical negligence case against the NHS. As the court heard, there was a two-day delay in administering an antiviral drug, leading to "catastrophic damage to his brain". This left him with eyesight and communication problems, cognitive and movement difficulties as well as behavioural issues.

The boy will receive a lump sum pay-out, plus annual, index linked and tax free payments to cover the costs of the 24-hour care he will need for life.

The trust’s chief executive apologised to the boy's family in a letter sent in May 2017.

The trust's barrister, John Whitting QC, said: "The care which he received was not of an

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appropriate standard and for that we are acutely sorry."

He added lessons had been learned and steps had been taken to ensure "nothing similar will ever happen again".

Another recent case saw the NHS agree to pay £19.8m in damages to an 18-year-old woman who suffered catastrophic brain injuries when she was deprived of oxygen as a baby.

The incident occurred at five months, when the individual was in hospital being treated for reflux.

A half-an-hour period without being given oxygen ultimately resulted in severe disabilities.

The pay-out, valued at £19,774,265, reflects the severity of the injuries she sustained and the lifetime costs of her receiving care at home around the clock.

It will be paid by Cardiff and Vale University health board in Wales, which runs the University Hospital of Wales in Cardiff, where the girl received poor care in early 2000.

The court heard how the woman stopped breathing and “turned blue” after hospital staff failed to give her oxygen.

A judge last month agreed that hospital staff had failed to properly ventilate the girl before and after she went into respiratory arrest on 1 February 2000.

A device which aids post-stroke rehab exercises has been named Britain’s best home-grown invention.

Neuroball, invented by UK firm Neurofenix, was chosen from a shortlist of the UK’s 10 best “garden shed inventions” that could seriously transform people’s lives.

The competition was sponsored by innovation foundation Nesta and supported by the government.

Neuroball allows stroke patients to engage in rehabilitation exercises at home and was inspired by relatives of the firm's cofounders who suffered strokes.

It connects to an online platform and enables patients to improve dexterity in their hand and arm in competitive and collaborative training.

The Inventor Prize, launched as part of the government's industrial strategy last year, will see £50,000 given to its creators to help get their product to market.

"We are so excited to be selected as the winners of the Inventor Prize, from the nine other brilliant and inspiring entrepreneurs," said the Neurofenix team.

The competition was launched to find "Britain's grassroots and garden shed inventors" and the £15,000 prize for second-place went to Cambridge-based Urologic for its NuCath catheter device.

Third prize was awarded to Edward Rogers for developing the Canute, billed as a "Kindle for blind people".

Business secretary Greg Clark said: "From researchers in life-saving meds to start-ups in garden sheds, we are home to some of the greatest minds in the world delivering cutting-edge inventions to improve lives.”

Study challenges cooling approach The practice of cooling the brain after a head trauma does not improve patient outcomes, researchers claim.

Cooling the body and brain after a traumatic brain injury has long been used as a technique to decrease inflammation, potentially minimising the long-term impact of the injury.

Critics of the approach point to its possible complications and the questionable quality of data that evidences its positive effect.

And now, Australian researchers claim it has no positive influence on patient outcomes.

Their study, published recently in the Journal of the American Medical Association, concludes that people who

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.

undergo brain cooling have the same ability to live independently as patients managed with their brain at normal temperature.

The study involved 511 people with TBI from six different countries.

In the randomised trial, researchers found the percentage of patients able to live independently six months following brain trauma was the same whether or not brain cooling was used in their treatment.

Death rates at six months were just over 21% in the group who received hypothermia, compared with 18.4% in those with a normal temperature target.

Adjusting the data for the severity of the brain injury and different patient groups made no difference to the results.

Setting standards for neurorehabilitation Developing focused training programmes Organising collaborative research

Representing providers of:

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

What we do:

• Raise the profile of independent providers within UK neurorehabilitation.

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

• Make recommendations to industry.

• Run a recognised training programme for rehabilitation assistants.

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

• Ensure members adhere to a set of recognised standards.

www.in-pa.org.uk NRTIMES 17

Spinal cord injury biomarkers detected Researchers from the University of British Columbia have discovered a gene signature tied to the severity of spinal cord injuries in animals and humans that will switch on or off in response to the injury.

While there are no widely available treatments able to restore motor and sensory functions immediately after spinal cord injuries, the researchers believe more insight on the genes could lead to the discovery of biomarkers that predict recovery and pinpoint new targets for treatment.

One of the hurdles preventing better spinal cord treatments is that scientists do not currently fully understand the complex cascade of biological processes that happen when a spinal cord injury occurs.

The team reviewed more than 500 studies to locate 695 unique human genes that are associated with the response to spinal cord

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injuries. From there, they were able to narrow down 151 of the genes that were linked in multiple studies.

To discover whether the genes truly reflect functional changes after a spinal cord injury, the researchers developed a network of genes from healthy human spinal cords. They were able to then integrate the data derived from the network with the data taken from the previous experimental studies they reviewed.

The found that the M3 and M7 groups of genes include a significant amount of genes that have been shown in experiments to be important in the response of a spinal cord injury.

The researchers further looked at five experimental studies of gene expression in mice and rats after spinal cord injuries to see whether any groups were significantly altered.

The team found at least four gene groups,

including the aforementioned M3 and M7, were switched on, and two other gene groups were switched off.

However, some of the groups were not as connected in the mice and rats as they were in humans. This suggests that these genes could be human-specific biomarkers for spinal cord injuries. Other groups were only important a specific time after an injury, which means that they are involved in the transition from acute to chronic injuries.

The researchers also narrowed down the M3 genes as the group most strongly linked to injury severity in the rodents, suggesting that they could be the ideal biomarker to predict the severity of the injury. In particular, annexin A1, which has been associated with spinal cord injuries in the past, is the one gene in the M3 group that was able to perfectly differentiate between moderately and severely injured rats when used as a biomarker.

“We have developed an integrated, systems-level approach to understand the mechanisms of spinal cord injury,” lead author Jordan Squair, a MD and PhD student at the University of British Columbia, said in a statement. “We have identified gene signatures that predict injury severity and, if reversed therapeutically, could potentially increase functional recovery.”

Guidelines issued New guidance on decision-making and mental capacity has been published by the National Institute for Health and Care Excellence (NICE).

Included are two aspects which are highly relevant to professionals working with clients with brain injuries: The recommendation that Independent Mental Capacity Advocates who deal with individuals affected by brain injury should have specific expertise about the condition Also, that executive impairment is not well assessed by a straightforward structured question and answer format, that real world observation is required.

Read more on the new guidance online at www.nice.org.uk.

CASE STUDY sponsored feature

Elysium Neurological services go from strength to strength

Elysium Healthcare launched in December 2016, and is now one of the fastest growing UK private healthcare providers.

It is a young, dynamic company with a passion for the delivery of patient centred care.

This is led and delivered by a management team with enormous industry experience.

Elysium Neurological is the neuro division of Elysium Healthcare which, having acquired a number of sites over the last 18 months, is now one of the UK's leading providers of neuro care.

Its ethos is built around sharing best practice, education and patient centric care. Together with rehab professionals, legal experts and charities, the company believes it is important to drive the neuro field forward for both residents and families alike.

Its centres provide both neurological rehabilitation and long term complex care for people with acquired brain injuries, spinal cord injuries and progressive neurological conditions such as Huntington’s and motor neurone disease.

Elysium delivers a high-quality service which is there to support the resident group, give them the best expertise, rehabilitation and

quality of life pathways. Features at its sites include fully-equipped gyms, accessible kitchens, treatment rooms and mobility equipment.

Residents activities include art therapy, cooking, face yoga, craft days, excursions out, sensory and relaxation sessions, dance and music workshops and seasonal celebration days, including Halloween themed parties, Harvest Festival, and, of course, Christmas celebrations.

The neurological therapy teams use advanced techniques to deliver customised programmes bespoke to the individual and these are measured through nationally accredited outcome tools. The teams on site are incredibly dedicated, caring, knowledgeable and driven to give the best care. Each environment instills a clean and homely atmosphere, with residents' artwork featured on walls and some beautiful outdoor spaces in which to relax and carry out activities. Here they can also enjoy visits from pet assisted therapy animals, such as dogs, cats and horses.

Meanwhile, Elysium has held a number of service user conferences this year, as well as

sharing ‘best practice’ days and CPD events which support the neuro market. This is alongside further involvement with wider initiatives around Huntington’s disease and brain injury awareness.

Now in its second year, Elysium has added to its portfolio of neuro sites. Badby, Stanley House, St Neots, Adderley Green and The Bridge all form its current neurological offering. This will enable Elysium Healthcare to offer placements further across the country and support for those families and individuals who require much needed care within the neuro arena.

For further information about Elysium Healthcare’s neuro division, or to find out more about their services, please contact: Central Referral Line: 0800 218 2398 referrals@elysiumhealthcare.co.uk

NRTIMES 19

Do mice hold the key to accelerated brain injury recovery?

Study hints at the overlooked power of activity after injury In brain injury recovery, getting back into the swing of things may be more effective than a prolonged period of rest, scientists claim.

A Columbia University study in mice hints at new, activity-centred treatment strategies which could speed recovery times after brain damage or stroke, researchers say.

They focused their study on the part of the cerebral cortex called the barrel cortex, which, in mice, is thought to be critical for sensing and analysing signals during “whisking” (moving whiskers to strike objects).

“Mice use whiskers to sense their surroundings the way we use our fingers,” explains researcher Y. Kate Hong.

Mice were placed in a dark box and trained to search for a nearby object with their whiskers.

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When the mice detected the object, they pulled a lever with their paw to dispense water as a reward.

Conventional wisdom suggests this kind of detection depends almost entirely on a functioning sensory cortex — in this case, the barrel cortex.

To test this, researchers used laser light to temporarily turn off barrel-cortex cells.

As expected, animals had difficulty whisking while the cells were turned off. And when the team then permanently removed their barrel cortex, the animals could not perform the task the next day.

But on day two, the animals’ performance suddenly recovered to original levels. “This came as a huge surprise, since it suggested that tactile sensation, such as whisker-based touch, may not completely rely on the cortex,” says Hong. “These findings challenge the commonly held, cortex-centric view of how the brain drives touch perception.”

The researchers suspect that other, more primitive brain regions may be involved to a greater degree than previously known.

“Rather than being confined to one particular brain region, sensory information is

distributed across many areas,” says Hong.

“This redundancy allows the brain to solve problems in more than one way — and can serve to protect the brain in case of injury.”

But to recover, did the animals simply need a day of rest, or did they need to be re-exposed to the task? To find out, the team performed another round of experiments, with one key difference: they let the mice rest for three days before re-exposing them to the task.

This time, the mice showed incomplete rehabilitation. While they did eventually regain some sensation, they recovered more slowly than the first set of mice. The key to a speedy recovery appeared to lie in re-engaging with the task early — not the passage of time.

As to why all mice perform so poorly during the first 24 hours, regardless of what they do?

The reason may lie in the disturbance that the brain has just experienced.

“The cortex connects to almost every other structure in the brain, so manipulating it may temporarily disrupt connected structures — in essence shocking those areas that would normally enable a behaviour,” researchers explained.

They caution that their research on rodents cannot be directly applied to human beings.

But they hope their findings will be further explored by neurologists looking to improve recovery times for their patients.

Hawking’s legacy lives on A new brain injury centre in Suffolk is to be named after Professor Stephen Hawking.

The Stephen Hawking Neuro Centre, on the outskirts of Ipswich, will support rehab for brain injuries and other neurological conditions.

It will also include 24 homes where clients can live as independently as possible.

The centre was announced by the charity Headway Suffolk, of which Dr Jane Hawking, the first wife of Professor Hawking, is a patron. She and Stephen’s family have given their blessing for the new centre to be given his name.

Implants breakthrough in spinal cord injury Spinal cord stimulation and physical therapy have helped a man paralysed since 2013 regain his ability to stand and walk with assistance. The results were achieved in a US research collaboration between Mayo Clinic and UCLA. With an implanted stimulator, the man was able to step with a front-wheeled walker while trainers provided occasional assistance.

The study began in 2016 and included 22 weeks of physical therapy, after which an electrode was surgically implanted. The implant sits in the epidural space — the outermost part of the spinal canal — at a specific location below the injured area.

It connects to a pulse generator device

under the skin of the man’s abdomen and communicates wirelessly with an external controller. After recovering from surgery, the man returned to the lab for rehab sessions and stimulation adjustments for the next 43 weeks. In a 2017 Mayo Clinic Proceedings paper, the authors reported their initial observations as they replicated research done at the University of Louisville.

Those early findings showed that, within two weeks of the stimulator being turned on, the man could stand and intentionally make steplike movements while suspended in a harness.

The research team then tried to determine if the man could stand and walk with assistance. During 113 rehabilitation sessions, the researchers adjusted stimulation settings, trainer assistance, harness support and speed of the treadmill to allow the man maximum independence. The research demonstrated

that the man was able to walk over ground using a front-wheeled walker and step on a treadmill placing his arms on support bars to help with balance. However, when stimulation was off, the man remained paralysed.

In the first week, the participant used a harness to lower his risk of falling and to provide upper body balance. Trainers were positioned at his knees and hips to help him stand, swing his legs and shift his weight.

Because the man did not regain sensation, he initially used mirrors to view his legs, and trainers described leg position, movement and balance. By week 25, he did not need a harness, and trainers offered only occasional help. By the end of the study period, the man learned to use his entire body to transfer weight, maintain balance and propel forward, requiring minimal verbal cues and periodic glances at his legs.

Maximise Your Potential Become a Spinal Cord Injury Expert • Do you work closely with people who have sustained a spinal cord injury?

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• Do you have 6 years or more post graduate experience as a Nurse, OT or Physiotherapist?

Then you can be an Expert!

What does a Jacqueline Webb Expert do?

An Expert completes a functional assessment of a claimant following a catastrophic injury resulting in a clinical negligence or personal injury claim. Following this assessment, an Expert completes a report on the lifelong care, equipment and housing needs of the individual.

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This role complements can sit alongside yourorcurrent clinicalsetting job and enhances your • Work in aand Community, Social Service Independent or as a Case Manager? clinical skills.• Recommend or review care packages?

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• Our Experts enjoy the ability to make recommendations for state-of-the-art What does a Jacqueline Care technology to support the ongoingWebb needs of the Expert claimant,do? support them back into A Care Expert completes functional assessment following a clinical negligence or meaningful occupation and helpa them engage again socially. personal injury and then produces a costcare report thetolifelong • Our Experts relish theclaim opportunity to facilitate andcovering support coverneeds the of a claimant.

This report includes care, equipment and housing and willfamily help the court often complex needs of a spinal cord injured claimant and intricate dynamics decide on the amount of compensation to be paid to the claimant. surrounding them.

• Experts Why have the freedom and independence to provide valued opinion on what a would you want to be a Jacqueline Webb Care Expert? client truly needs well that as the work clinical as an autonomous practitioner • Part timeaswork sits opportunity alongside yourtocurrent role with like-minded and mentoring highly respected peers.

• Initial 1-2-1 and comprehensive training • Continuous ongoing development and networking opportunities • Flexibility as the majority of the work is done at home • Freedom to recommend what is truly required for an individual opportunity to be rewarded for your expertise, call or • Be financially rewarded for your expertise

To find out more about this fantastic email Aaron McGonigle on 01722 342513 or mcgoniglea@jwebb.co.uk

Visit www.jwebb.co.uk/apply to register to speak to our recruitment team

NRTIMES 21

The MS Society is supporting a major trial that offers fresh hope to thousands.

Search for MS treatment stepped up The UK’s biggest trial into treatment for secondary progressive multiple sclerosis (SPMS) is now underway, organisers have announced.

It is hoped that the study – the third and final phase of the trial into the drug simvastatin will lay the foundations for an effective SPMS treatment, which is currently lacking.

The MS-STAT2 trial will involve 1,180 people with SPMS and confirm whether simvastatin could slow or stop disability progression in SPMS cases, offering new hope to thousands.

MS affects over 100,000 people in the UK, and most expect to develop a progressive form of the condition.

Positive results from a smaller trial showed simvastatin – currently used to treat high cholesterol – could improve levels of disability and slow disease progression.

It also reduced the rate of brain atrophy (shrinkage), suggesting the treatment could protect nerves from damage in SPMS. Recruiting for the trial will run until the end of 2019 across almost 30 sites – including those in London, Sheffield, Leeds, Edinburgh, Poole, Glasgow, Belfast, Dublin, Nottingham, Cambridge, Manchester, Cardiff and Exeter.

Bruce Barrett, 40, who lives in Oxfordshire

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with his wife and two sons, hopes to participate. He says: “I live with uncontrollable tremors, which means everyday activities like brushing my teeth and getting dressed are really difficult. This trial gives me a lot of hope – if it leads to a new treatment for SPMS, it could completely change my quality of life. It might mean one day I could kick a ball around the park with my boys, rather than sit in a wheelchair watching them.”

Jeremy Chataway, a consultant neurologist at UCLH who is overseeing the trial, said: “Simvastatin is a very promising treatment prospect for secondary progressive MS in our lifetime. People with this form of the condition have been waiting decades for a drug that works, which is why there’s such excitement around being able to start the trial. While it’s still early days, we believe simvastatin could change lives.”

The multimillion-pound trial is being funded by the MS Society in collaboration with the National Institute for Health Research, the National MS Society (US), the NHS and UK universities.

Dr Susan Kohlhaas, Director of Research at the MS Society, said: “We are incredibly proud to be funding MS-STAT2, because we know what it could mean for people living with progressive MS. This condition is unpredictable, painful, and often exhausting, but finding an effective therapy means debilitating symptoms aren’t inevitable.

“Today if you’re diagnosed with this form of MS you don’t have any options, but we’re getting closer to changing that, and hopefully delivering the solution everyone has been waiting for.”

Meanwhile, researchers in America have found positive signs that the promising drug ibudilast could limit the impact of progressive MS. Their phase two trial, published in the New England Journal of Medicine, showed that the drug decreased progression of brain atrophy in progressive MS patients by 48 per cent versus placebo. The two-year SPRINT-MS study was conducted at 28 sites with 255 patients.

Principal researcher Robert Fox said: “Our hope is that the benefit of ibudilast in slowing brain shrinkage will also translate to

decreased progression of associated, physical disabilities in a future phase 3 trial.

Ibudilast, an oral drug with activity on several biologic pathways with potential relevance to progressive MS, was approved in Japan in 1989 for use in asthma and stroke. It is also being studied in the US for potential treatment of drug addiction and motor neurone disease.

Huntington’s breakthrough in Scotland Scientists have heralded a breakthrough in the quest for better treatments for the earliest symptoms of Huntington’s disease.

Researchers found that the drug Metformin may have therapeutic benefits for those recently diagnosed.

It is believed the drug – usually used to treat diabetes – can help to restore brain activity before symptoms of the terminal illness become established.

Research published in the journal eLife found that the drug can help to regulate the Huntingtin protein, which in a mutated form can accumulate in the brain, leading to the onset of the illness.

The study was led by the University of Dundee – working with Johannes Gutenberg University and the German Center for Neurodegenerative Diseases in Bonn, both in Germany.

Dr Ros Langston, of the University of Dundee School of Medicine, and co-author of the study, said: “This is a really important development as there are currently no effective treatments for Huntington’s patients.

“Metformin is already in the public domain and its limited side effects are already known, meaning that further studies should not take as long as those for new drugs. This means that in terms of developing therapeutic treatment for people who may have Huntington’s in their family, this is potentially very exciting news.”

From studying the visual cortex in mice treated with Metformin, researchers found that the drug helped to restore brain activity patterns and reduce erratic behaviour by controlling the Huntingtin protein.

COMPANY NEWS sponsored feature

A retreat on a beautiful patch of French countryside is enabling people with catastrophic injuries to enjoy stress-free overseas family holidays once more.

t s a l t a r e h t e g o T Community Case Management Services (CCMS) has transformed a 17th Century large dilapidated farmhouse and an adjoining stone barn in an idyllic corner of Normandy into an accessible holiday venue and retreat.

The retreat offers people with subtle to highlevel disabilities a place in which to relax with friends and loved ones in the heart of picturesque northern France.

It has a fully-accessible ground floor living area and five en suite bedrooms in the main house; and a purpose-adapted attached gite with a double room, profiling bed, as well as overhead tracking, if required, to an en suite Aquanova bathing system, wet room, and toileting.

The kitchen area has cantilever surfaces and induction hob with seating. The two twin rooms on the first floor can accommodate support workers or additional family and friends, both have en suite facilities.

There is a covered entrance area to access the gite and the driveway is wheelchair friendly. The retreat also has a hot tub and sauna available in the former kitchen garden which has been sympathetically and artistically landscaped.

It enables families to enjoy an overseas trip together; something they may have avoided previously due to the perceived challenges of travelling abroad with a high level of disability.

The once-derelict property has been restored to its former glory as a classic French

farmhouse, but now boasts expansive kitchen, dining and lounge areas, and a solid fuel hot tub and sauna with accessible grounds.

It sleeps 16 people overall, comfortably all in large en suite bedrooms, whilst larger parties can take advantage of the external yurt and a camping ground that is being developed within the four acres surrounding the property.

The house stands among secluded walled gardens, with sweeping countryside views, near the village of Camprond – about an hour from either Cherbourg or Cairns ferry ports.

Local places of interest include the Mont Saint-Michel island commune, the Christian Dior Museum and the D-Day landings site.

It is only a short drive from the wild beach, Plage de la Vielle Eglise, where thrill-seekers can experience the exhilarating sport of sand surfing, mussel picking at low tide, and a number of beach-based activities.

CCMS co-founders and owners, Kate Russell and Maggie Sargent, say: “Holidays are so important for everyone, irrespective of health restrictions; they allow people to spend precious time with loved ones, unwind and escape everyday life.

"Of course, disabilities bring extra challenges, especially when travelling abroad, but they shouldn’t stop families from getting away together.

“Our new farmhouse is designed to remove any of the fears disabled individuals, or their

families and friends, may have about going on holiday. It is equipped with everything needed to support people with disabilities, from subtle walking wounded to highlevel catastrophic complex injuries with high-level care needs allowing for as much independence and privacy as possible.

While we hope people will come back to the farmhouse again and again, we also hope it acts as a confidence-building stepping stone to further trips overseas for clients."

CCMS provides case management rehabilitation services in the UK, Europe, and further afield, working with severely injured children and adults to improve their quality of life and become more independent with consequently better quality lives.

Camprond Farmhouse is now open for individual, family and group bookings.

Email camprond@ccmservices.co.uk or call Gill Bryan on 01608 682 522 to enquire.

See www.ccmservices.co.uk for more information.

NRTIMES 23

INSIGHT

SUICIDE AND BRAIN INJURY Researchers have reaffirmed links between the two in a major study, as Andrew Mernin reports.

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INSIGHT

Tom’s troubled path from head injury to suicide spanned 21 years.

It began with a road accident at age 22, which led to the subsequent onset of epilepsy, chronic insomnia, depression and muscular and skeletal pain. Intermittent drug and alcohol problems followed, as did a series of let downs by health and social care professionals. While his anonymity was protected, his unfortunate story was publicised last year following a 2016 review

by Somerset Safeguarding Adults Board.

They uncovered a sequence of missed opportunities to change the trajectory of his life.

His demise highlights the complex chain of events – often over many years – that can push people to the take their own life following a brain injury.

Although perhaps not a typical case, it also shows why categorically explaining and proving the links between suicide and brain injury is so challenging. Brain injury can cause chaos where once there was relative calm.

The fallout can spread far and wide, internally and externally. Identifying a clear signal of when and why it might be a precursor to suicide is a huge challenge for scientists.

The latest researchers to take on this endeavour have produced possibly the most comprehensive brain injury/suicide data yet.

Medical records of 7.4 million people aged 10 or over, from 1980 to 2014, were analysed in the Danish Research Institute of Suicide Prevention study. The headline finding from their data is that people with a history of traumatic brain injury (TBI) are twice as likely as those with no TBI to commit suicide.

Some 567,823 people, or 7.6 per cent, were found to have received treatment for a TBI. By the end of 2014, 34,529 people in the study were found to have taken their own lives. Among those with no history of TBI, the suicide rate was 20 per 100,000 people per year.

This compared with a rate of 41 per 100,000 per year among those with a history of TBI. Put another way, one in 20 suicides could be as a result of head injuries, if the data is to be believed. At the same time, the researchers emphasise that suicide remains a rare event, with 0.62 per cent of all people

treated for TBI dying this way.

Senior author Dr. Michael Eriksen Benros explained in the paper: “TBI can affect the brain's functions by inducing an inflammatory reaction and potentially chronic neuroinflammation, in addition to vascular damage and white matter degeneration, which may increase the risk of mental disorders and suicide.

“We have previously shown that TBI increases the risk of subsequent psychiatric disorders and consequently increase the risk of suicide as we show in this study.”

Lead study author Trine Madsen tells NR Times: “TBI can also cause long-term problems with physical symptoms such

Trine Madsen, lead author of the study.

The consequences of TBI can affect both social relations and employment

as head ache, dizziness and neck pain, and cognitive symptoms like memory impairment and concentration problems. These may lead to social problems or psychiatric symptoms that could increase the risk of suicide. The consequences of TBI can therefore affect both one's social relations and employment.”

Another finding of the study was a greater suicide risk in younger people with TBI. Madsen says: “We found that those who experienced a TBI in the 16 to 20 age group had the highest subsequent rate of suicide - a threefold higher risk – compared to the general population. This risk was also enhanced in those having a TBI in the ages between 21-40, where the suicide rate was more than twofold higher.”

The study also found that the risk increase was greatest within the first six months after initial treatment for brain injuries.

Madsen says: “For some individuals learning to live or accept living with physical, cognitive and emotional symptoms and impairments could play a role in developing post-TBI suicidal thoughts, that could lead to suicidal behaviour.”

Severity of injury, roughly measured by the length of hospital stay for each person, also correlated with a higher suicide risk.

Madsen adds: “In terms of future research, we are planning to look into how TBI is associated with a non-lethal suicide attempt as an outcome. Also, it would be interesting to carry out a large register-based study examining how TBI might be associated with more social consequences such as employment status in the years following the TBI incident.”

The Danish research is the latest part of a growing body of evidence linking brain injury and suicide – although data is inconsistent in terms of calculating the suicide risk following head injury.

A study published last year in the American Journal of Preventative Medicine outlined brain injury as one of several illnesses linked to heightened suicide risk.

Based on 2,674 suicide cases, it reported that brain injuries make people nine times more likely to commit suicide than members of the general population. This compares to a two-fold risk increase in sleep disorders and HIV/AIDS.

NRTIMES 25

INSIGHT

A separate study in Denmark in 2001, analysed 145,440 head injury cases and found that suicides were more than twice as prevalent after skull fracture and quadruple after brain haemorrhage.

Canadian researchers in 2016 brought further such evidence. Of 100,000 concussion patients, 31 committed suicide – three times the population average.

While figures vary, there is clearly a common theme; head injuries play at least some part in influencing suicides.

But deciphering exactly what that role might be from case to case can be an immense challenge for researchers. A recent paper (Palladino, 2017) underlines why.

The study aimed to gauge the suicide risk of US veterans who were homeless and had experienced a TBI. According to the US Department of Veteran Affairs, with adjustments made for age and sex, suicide risk in veterans is 22 per cent higher than the general adult population.

Brain injury, like suicide risk, is also relatively high in veteran groups. Paladino and colleagues, therefore, set out to test for a correlation between the two.

The study indicated that, although veterans reporting low-to-moderate risk of suicide were demographically similar to those experiencing high risk—and have suffered approximately the same number of TBIs— their reporting of post-TBI symptoms were significantly different.

Veterans expressing high risk of suicide more frequently experienced blurred vision, difficulty managing stress, struggles with memory and problem-solving and seizures following a TBI; the presence of these symptoms may be an indication of a more severe TBI. In addition, these veterans also more frequently reported symptoms consistent with PTSD which overlap to a large degree with symptoms of TBI. Perhaps PTSD, homelessness and brain injury make such a poisonous concoction that all three elements contribute to suicide risk.

Untangling these factors and calculating their specific link seems an a near

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impossible task for scientists.

Demand for such understanding is increasing, however, especially in the US where awareness of suicide and brain injury is rising.

This follows a stream of high profile suicides by former stars of American football – which remains under attack for its poor record on head injuries.

The NFL has spent recent years dealing with lawsuits from families of players whose premature death or struggles in later life can be attributed to concussion.

As well as possible links to brain disorders like dementia and Parkinson’s, suicide has also been investigated as one of the ugly consequences of chronic traumatic encephalopathy (CTE).

In September, former NFL star Jason Hairston, who previously spoke in interviews about having “all the symptoms of CTE” took his own life at age 47.

In 2012, ex-San Diego player Junior Seau committed suicide two years after retirement.

As with scores of other deceased ex-players, his brain tested positively for CTE. Among other such cases is ex-NFL player Terry Long, who took his own life by drinking a gallon of antifreeze.

In 2012, Jovan Belcher murdered his girlfriend and then drove to an American football training facility, where he then took his own life. Dave Duerson and Adrian Robinson are also on what is a shameful list for the sport’s official custodians.

All committed suicide and all showed signs of CTE in a post-mortem.

In the UK, meanwhile, the recent appointment of the first Minister for Suicide Prevention may put suicide awareness higher up the agenda.

The landmark hire of Jackie Doyle-Price, a junior minister in the Department of Health, came on World Mental Health Day. Perhaps she’ll have her ear bent by members of Westminster’s increasingly vocal brain injury lobby, as organised through the brain injury APPG (see p10).

ABI will hopefully be an important consideration as she sets about her work leading the push to reduce suicide rates and the stigma that prevents people in despair from seeking help.

"Where words fail, music speaks" Hans Christian Andersen Music therapy could help to reduce risk factors that influence a person's journey towards suicide, writes Dan Thomas, director of Chroma.

According to the literature, music can play an important role in the facilitation of making a connection (Stern, 1985; Trevathan, 2011); a connection between a person and their music therapist; a connection between music and feelings which the brain injury survivor may struggle to put into words. The literature (Dileo, 1999; Jones, 2005) and clinical practice highlights musical connections as a protective factor to stabilise low emotional states and to focus on living/ the future. Making music connections is also seen as a necessary component of suicidal treatment (Erbacher, 2008).

Music therapy participants often identify the connections they make in sessions as an important protective factor, thereby giving music the role of facilitating connection. Music also plays a role in improving mood, on a social, chemical and physical level. And for people living with a brain injury, the role of music as a tool to express their experience of life without the need to find the “right” words can be invaluable.

Chroma is a leading provider of neurologic music therapy (NMT). www.wearechroma.com

We are the UK’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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TECHNOLOGY

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TECHNOLOGY

A young girl’s struggle with a brain injury after being hit by a car is the subject of a BBC film which uses VR to help others understand the experience. Peter McCusker reports.

LIFE IN VR

Anna Khan woke up in February 2016 adamant that it was still 2015, but the date was correct - she had ‘lost’ almost two months of her life.

The Sheffield lass had been walking home from college with her twin sister and best friend Lauren when a car hit her; she was thrown over the bonnet and landed on her head.

She says; “I do not remember any of my days in hospital. Everything I know is what my family has since told me.

“The last thing I can remember after my injury is one day at the rehabilitation centre around February time. I can remember waking up and being very confused about everything.

“When I regained my bearings, I was disorientated to discover that it was 2016, as my accident happened in 2015.”

From January 2016 to March 2016 Anna underwent an intensive programme of physiotherapy, speech and occupational therapy and she continues to work on her recovery today.

And, it is the ongoing battle to put her life back together that is the focus of a new piece of work from the BBC in conjunction with VR animators Aardman Animation, famous for the hit Wallace and Gromit films.

BBC journalist Camila Ruz spent months with the twins, who now live in Scotland.

She explained why BBC Stories decided to approach the twins and make the piece entitled ‘Is Anna OK?’.

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TECHNOLOGY

“We’d known for some time that we wanted to experiment with interactive VR. “The creative possibilities that it offers to journalists are huge - the idea of building a world around someone and offering our audience a way of living a story rather than just passively consuming it is incredibly exciting.

“But we had been waiting for the right story.

It needed to be something that would be told best in VR rather than a piece that should just have been a documentary. We were also trying to find a relatable story.

“Much of VR, and often journalism, focuses on extremes but we were hoping to create a piece that focused more on a relationship and that would really resonate with people.”

Following the collision Anna was rushed to hospital and remained in the critical care unit for a week with a broken leg, fractured face and hip, punctured lungs and the serious head injury.

After spending over a month in an induced coma she slowly began to regain consciousness.

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Anna said: ”Thankfully, I was able to remember my family and twin sister without any problems after my head injury.”

One of the facets of Anna’s condition is memory loss and Camila explained that initially they considered telling the story from just her perspective, but it became clear that this was a story in two halves.

“Only Anna knows what it’s like to be in her mind and only Lauren was a witness to everything. It became clear that the story could only be accurately and sensitively told if both sides were heard.”

Camila says VR is particularly good at putting the viewer/viewers in the shoes of another person enabling them to live a very different point of view.

She continued: “This seemed like a good fit for a story about traumatic brain injury - a subject that can be hard to explain to someone who has no personal experience.

“The story of twins Anna and Lauren also opened up the possibility of telling the same events from two distinct perspectives. The audience can see through the eyes of Anna

and get a glimpse into her world after her injury.

“But you can also see the experience of a carer and family member through Lauren’s eyes. It allowed both sides of the story to have a voice.”

Camila spent months getting to know the twins, through visits, chats and phone calls.

This saw the relationship between the three flourish and allowed Camila to collate the necessary level of every-day detail to faithfully recount their experiences.

She said: “A VR project is an odd thing to ask someone to be involved in so we wanted to take it slowly and make sure that Anna and Lauren were completely comfortable with what it would mean.

“Anna and Lauren have been extremely patient with all the strange questions I’ve asked, as well as being very brave in sharing such a personal story.”

Anna says she found the hidden effects of brain injury put pressure on her close relationships with her twin sister and younger sister.

TECHNOLOGY

“I used be very, very close to my two sisters, supporting them in ways which I cannot do now. I’m not as strong as I used to be and can’t talk to them like I used to. Supporting them is tough as I am too busy fixing myself.

“Hearing my sisters compare the two versions of me was painful. Comments such as ‘we used to be so close before the accident’ hurt because it upsets me that our friendships have been impacted by my brain injury,” she said.

Headway, the UK the brain injury association, has supported Anna in her ongoing recovery and provided the BBC team a wider context on the unique nature of brain injury, as well on how it affects not just the survivor but also their wider relationships.

“This is a truly innovative and imaginative way of giving people a hint of what life can be like for people living with brain injury,” said Luke Griggs, director of communications at Headway.

“We recognise that most people won’t own the equipment needed to experience this in full, but by showcasing it at festivals and events across the country, we hope more and more people will gain a better understanding of brain injury.

“We are very grateful and proud of both

Lauren and Anna. Their courage to take part and share what was a very difficult time of their lives with a wider audience shows great bravery.”

Camila continued: “From the outside, Anna has made incredible progress over the time that I have known her and has been fully supported on her journey by her sister Lauren.

“It’s actually been a real privilege to get to know both of them and to spend time with the whole family as we’ve made this VR experience.”

The film was launched in late October and within a few days it had recorded over 1,000 views.

Camila added: “We’ve been thrilled with the reaction to our story. The live experience version in particular seems to be capturing people’s interest. This is where the VR is experienced within a set and two people can go through it at the same time, as a different twin.

“They can then share their experiences and work out the full story together. It helps challenge the idea that VR has to be something solitary and also starts conversations between people about brain injury - a subject they may never have thought much about before.”

We'd been waiting for the right story. It needed to be something that was best told in VR

Anna and Lauren’s story has been brought to life by BBC Stories in collaboration with the teams at BBC Studios Digital and Aardman Animations, and published by BBC VR Hub. The BBC says ‘Is Anna OK?’ ‘takes viewers through an emotional journey piecing together the two sides of a true story exploring brain injury’.

The VR production format ‘allows participants to assume the roles of 20-year-old twins Anna and Lauren, with the aim of discovering how their lives are changed by this catastrophic event,’ they say.

The BBC’s collaboration with Aardman Animations on ‘Is Anna OK?’ follows on from a previous joint piece of work in 2016.

This VR collaboration ‘We Wait’, is a dramatised depiction of migrants making the journey from Turkey to Greece on smugglers’ boats.

Based on accounts gathered by BBC News and bought to life by Aardman, it tells the stories of refugees, whilst placing viewers at the heart of the story.

Aardman’s founders, David Sproxton and Peter Lord, became friends at school and started their adventures in animation from a kitchen table in David’s family home in 1972.

Their first work was for the TV children’s programme ’Take Hart’ and since then they have gone on to creating memorable stories and timeless animated characters which have become household names – including Wallace and Gromit, Shaun the Sheep and Morph.

Is Anna OK? has been featured at film and technology festivals across the country, including Edinburgh TV Festival, Sheffield Documentary Festival, and the 2018 Raindance Film Festival, where it was shortlisted for two awards.

Is Anna OK? is available on the BBC website and the Oculus Store for Oculus Rift.

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TECHNOLOGY

New technology developed in the UK could accelerate improved care for brain injured babies in their first few days

LIGHT FANTASTIC Experts from the campus and hospital ward have come together to develop a revolutionary way of improving baby brain injury treatment.

Andrew Mernin reports.

The brain injury technology University College London has been working on for eight years looks decidedly unremarkable.

Barely noticeable in the neonatal skyline of equipment is a trolley housing a laptop and what looks like a projector.

Yet the data it offers clinicians could accelerate improved care for brain injured babies in their crucial first few days.

Currently, when babies suffer brain injury at or soon after birth due to lack of oxygen to the

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brain, doctors must wait several days until the newborn is stable enough for an MRI scan.

Only then, usually at least four days after the birth, can they detect and assess the injury.

In these days before the MRI, there is poor visibility on whether treatments are working or how severe the injury may be.

But a new device, which has now passed a feasibility test involving over 50 babies with hypoxic-ischemic encephalopathy, could close this window of missed opportunity.

Dr Ilias Tachtsidis, biomedical engineer and team leader on the project, explains: “We wanted to know, from day one, what is happening to the biochemistry of the brain tissue in these babies. EEG shows how well the brain is doing in terms of the neuronal activity but it doesn’t show anything about how well the brain is getting oxygen or using it to produce energy.

“The other instrument at the doctors’ disposal is the MRI, but it is very difficult to take a

TECHNOLOGY

sick, one-day-old baby for an MRI scan. The challenge was to develop a device that we can use immediately after the baby is born to inform the clinical team about the brain health of that baby.”

UCL engineers, doctors and scientists have combined forces in overcoming this challenge since 2010 – supported by funds from the Welcome Trust and access to UCL Hospital.

The product of their endeavours is a seemingly transformative piece of cotside kit for neonatal intensive care wards.

Its magic is made possible through a technology that started life in the late seventies and has since emerged as a gamechanger in internal body monitoring.

Broadband near-infrared spectroscopy uses light with wavelengths just beyond the red end of the rainbow and is invisible to the eye.

This near infrared light can travel far into the body – even through bone – while other colours with shorter wavelengths are absorbed and don’t pass through.

Light can reveal changing oxygen levels in the blood pumping through arteries and veins. Certain molecules in the brain, such as oxygen-carrying chemicals in the blood and cytochrome c oxidase in mitochondria, change colour depending on their activity and oxygen levels. Different colour molecules absorb and reflect different colours of light, so by measuring the colours of the light passing through the brain, it is possible to work out the volume and activity of these molecules.

This data shows doctors which areas of the brain are working properly or have been damaged due to a lack of oxygen.

In the device, near-infrared light travels down optical fibres and is shone on the baby’s head.

Some of it passes through the skull and brain and comes back to the surface.

This returning light is picked up by another optical fibre and travels to a spectrometer, which measures the relative amounts of different coloured light in the beams.

The light is then split into a spectrum of its constituent colours, using a prism or ‘diffraction grating’. Then a camera detects the amounts of each colour of light.

Finally, a computer calculates changes in the way certain parts of the brain are using oxygen and generating energy, giving a readout of brain metabolism and activity.

Tachtsidis says: “Our feasibility study has shown that the measurements can identify and classify newborn babies from day one; which ones are going to have a severe brain injury? Which will have severe or mild neurodevelopment issues?

“Our technology has shown a very high specificity in terms of classifying where the babies are going to be at two years old and five years old, for example. Are they going to have neurodevelopment issues, cerebral palsy or cognitive issues? We can identify this in babies from day one.”

Given that the device is cheap, cotside, noninvasive and harmless, industry parties are

The technology is made possible through broadband near-infrared spectroscopy, which can travel far into the body, and even through bone.

The measurements can identify and classify newborn babies from day one

understandably circling; and Tachtsidis is hopeful of an eventual mainstream roll-out. It could take several years, however.

“Launching a medical device is a long process that requires a lot of regulation. We’ve had quite a few phone calls asking about the device from various industry players, especially those interested in intensive care.

I am hoping, with the help of UCL, we can manage to disseminate the value of this technology to the industry and get closer to a widely-available device.”

Next on UCL’s immediate agenda is figuring out how the data generated by the technology can influence better outcomes for brain injured newborns.

“We have a long way to go,” he says. “We still have to test how we can use this technology to manage treatment. We now have technology that, very early on, can prognosticate the impact of the brain injury on the baby.”

According to the National Neonatal Database, around three in 1,000 babies born in England suffer brain injury at or soon after birth, due to lack of oxygen during delivery. In the US, this figure is estimated at between one and six.

More than half of affected newborns will develop disabilities, while one in 10 dies. The risk is higher in babies born before 37 weeks, where up to 26 in 1,000 babies are affected.

The standard approach in hospitals is to cool the baby’s body temperature to slow their metabolic processes.

Often, babies are placed on a water-filled cooling blanket and monitored over

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TECHNOLOGY

Currently there is no way to gather detailed information about brain function at the cotside in a neonatal intensive care unit, researchers say. several days. An IV may help to further reduce body temperature.

According to one prominent expert in the field, Dr. Inder of Washington University School of Medicine, “neonatal therapeutic hypothermia can reduce the chance of severe brain injury by 25 per cent in term-born babies with poor transition or low Apgar scores after birth”.

Since the treatment is not effective in every baby, however, Tachtsidis believes the new light technology could save time by quickly identifying which newborns are not benefitting from it.

“The clinical team needs to know very early on if this is not working for the infants to decide what else they can do about [the injury]. They need a measurement that enables this.”

There are various hurdles to get through before UCL’s technology is commercially available to hospital management.

“Clearly we are looking at how we can disseminate our work and roll it out to more hospitals.

“We also need to build a demonstrator

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unit and, once we have that, we can move towards a clinical trial. There may also be some education required in terms of helping clinicians to understand the data and act on it.”

If UCL’s bright minds can prove to the world that their creation is a worthy addition to the hospital cotside, it could be a revelation in brain injury care.

The impact of a brain injury at birth due to decreased oxygen (hypoxia) and blood flow (ischemia) can lead to intensive, life-long care needs. Speeding up the immediate response time to unfolding events in the brain might change the life trajectory of newborns.

In the UK, the healthcare sector’s approach to baby brain injury risk has been a contentious issue in recent years. In some quarters, the drive for natural births has been blamed for a seeming rise in maternity ward injuries.

Last year the Royal College of Midwives formally announced it had discontinued its 12-year campaign for normal births without medical intervention.

Meanwhile, a 2017 study by the Royal College of Obstetricians and Gynaecologists suggests

that most baby brain injuries in labour are avoidable.

It analysed 1,136 stillbirths, neonatal deaths and brain injuries on UK maternity wards in 2015. Three quarters of the babies – 854 of which suffered a brain injury – might have had a different outcome if they had received different care, researchers said.

While baby brain injury is a medical issue that can have a profound effect on families, their financial impact is also under scrutiny.

A report by NHS Resolution last year showed that compensation claims for new-borns with brain injuries or cerebral palsy soared 23 per cent in 2016/17 to 232. Their collective claim value was £1.9bn. It is predicted that the perchild claim value could soon hit £20m, NHS Resolution said.

For all concerned – families, the NHS, neonatal professionals and, of course, the tiny patients who will enter the world fighting for survival – much is riding on the success of UCL’s promising project.

Find out more at www.metabolight.org

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

CAREER

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CAREER

Over 90% of case managers in the brain injury field would recommend their career to others - and more than seven in 10 say they enjoy their job.

This is well above the UK national average and on par with the satisfaction levels found among the clergy, teachers and chief executives, says Nockolds Solicitors.

It is also in stark contrast to members of the legal profession, with whom case managers work closely, finds separate research.

Over half of personal injury solicitors say they would not recommend their line of work to others, reports Exchange Chambers.

Angela Kerr is the chair of BABICM (British Association of Brain Injury Case Managers), which has over 700 members in the UK. She is also managing director at Nottingham-based AKA Case Management.

Being able to work closely with clients, and contributing positively to many difficult, individual situations can be life-affirming for case managers, she believes. “Case managers support their clients to overcome life changing injuries, working individually with them to access services unique to that individual’s needs.

ON THE RIGHT PATH? Career contentedness varies widely between brain injury professions, new research suggests.

Peter McCusker reports.

Angela Kerr, chair of BABICM

Case managers ride the rapids of a client's recovery through the highs and lows

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CAREER

“The closeness of the relationship that develops over a long period of time allows case managers to see the value they can bring, to each and every person they work with.

“Generally, positive outcomes are achieved albeit over many years. Case managers ride the rapids of a client's recovery through the highs and lows which enables them to connect closely and build trust with them.

“Support is also offered to families, allowing them to develop an in-depth understanding of the situation and adjust to the limitations of the client’s disability.”

Kerr said these relationships develop over a long period of time – as a case manager, she is still working with clients 15 years on from appointment - allowing a deep bond to develop between all parties.

“In many ways your aim is to work yourself out of a job, and that’s fine, as the aim is for your patient to regain as much independence and

Bill Braithwaite, Exchange Chambers

So many of them aren't involved in really satisfying work

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where possible, for them to get to a certain level requiring minimum help.

“Your role then becomes one of adding value to their lives as they overcome the challenges they face. It’s a very rewarding professional life,” she added.

The job satisfaction findings come in a Nockolds Solicitors paper; ‘The Challenges Case Managers Face in Order to Achieve the Best Possible Outcomes for their Clients’.

Meanwhile Exchange Chambers finds 56% of solicitors would not recommend a career as a personal injury/medical negligence specialist to others.

Bill Braithwaite, QC, head of Exchange Chambers, said: “The reason so few personal injury solicitors would recommend their career to someone else is that so many of them aren’t involved in really satisfying work.

“Much personal injury litigation is low value, high volume, which may produce lawyers’ profits, but certainly doesn’t look like a worthwhile career.

“Case managers, on the other hand, are undoubtedly setting out to achieve something of real value for people who need all the help they can get.

“In my world of catastrophic brain injury, which is where case managers started - I lectured at the first public meeting of BABICM in 1996 - the first thing a good lawyer will recommend, if money is available, is the appointment of a specialist brain injury case manager.

“If the patient is lucky enough to have a good case manager, he or she will achieve an enormous improvement in condition and prognosis, and will help to make rehabilitation and later life a much more enjoyable experience for the patient and the family.

“Why wouldn’t you recommend that career to someone else?”

Rachel Davis, a serious injury specialist at Nockolds Solicitors, said: “I expect the big difference is down to the fact that case management is about assessing a client’s needs and improving their quality of life through care and rehabilitation, while personal injury lawyers deal with the litigation side, the defendants and the costs regime - it can be very frustrating at times.”

Rachel Davis, Nockolds Solicitors

Lawyers deal with the litigation side, the defendants and the cost regime - it can be very frustrating at times Stresses exposed; Further research required Both pieces of research also highlight the stresses that surface in the relationships between care managers, clients, client’s families and personal injury solicitors.

Exchange Chambers' Case Management Process Survey found 56% of claimant solicitors have sacked and replaced the case manager during the course of their client’s recovery process.

Also, over three-quarters of claimant solicitors say they have experienced a situation where the family has not acted in the best interests of their seriously injured relative.

In more positive findings, 73% of solicitors say case managers always act in the best interests of the client.

However, the Nockolds Solicitors survey found that 81% of case managers have experienced a situation where a claimant solicitor has ‘clearly not acted in the best interests of the client’.

CAREER

It reports the biggest headache for case managers is the rate at which funding is released; while also finding that over twothirds of case managers have been verbally abused by their client or client’s family and 13% have been physically attacked.

Braithwaite said: “The themes emerging from this research can act as a catalyst to improve the whole claims and rehabilitation process.

“An open dialogue between all parties needs to start now. Serious issues need addressing.

Everyone must act in the best interests of the injured person, otherwise the whole system breaks down.”

Davis concluded: “There is clearly a perception that family members, solicitors and case managers are, on occasions, not acting in the best interests of the injured person.

“Whether this is intentional or not, there is simply no excuse for not putting the injured person first.

“It is particularly worrying because in serious injury cases, traumatic brain injury for example, survivors are likely to have complex long-term problems affecting their personality, their relationships and their ability to lead an independent life. They are extremely vulnerable and often dependent on the support of those around them.”

Commenting on the role case managers play, Braithwaite added: “I've always thought that a good case manager was the key to a successful outcome for the injured person, the family, and the compensation claim.

“If you appoint a good case manager early, and that person has the ability to get to know the family, gain their trust and confidence, and help to manage the stormy voyage through recovery and rehabilitation, that person will be an invaluable contact point for the solicitor, frequently helping him or her to avoid disturbing and distressing the family.

“So much of the litigation is bound up with the injured person and the family, and the plan for life, that it seems to me to be obvious that the case manager should be involved in some part of the litigation process.”

Kerr described the research as interesting, "having triggered many questions".

She continued: “We have spoken to Exchange Chambers in acknowledgement of its

research which is adding to the conversation between professionals.

“The survey is interesting, although we would not necessarily support its findings and would like to develop a more validated hypotheses in conjunction with BABICM’s research partners at Plymouth University.”

She went on to say members of the BABICM council had not been approached to participate in the research and felt further work was needed to more accurately quantify the value of case managers.

She also explained that BABICM was looking to establish a regulatory body in conjunction with the other professional bodies involved in case management work.

Braithwaite summarised that the surveys show there is room for improvement in managing the relationship between case managers and personal injury solicitors.

He continued: “Moving forward, the starting point for me would be to ensure that personal injury lawyers are truly expert in what they do.

“Since time immemorial, personal injury has been an area of work that many or most

lawyers think they can manage alongside their other areas.

“I've found, over more than a quarter of a century, that true specialisation really works; clients appreciate the knowledge that you bring to their problem, and the whole rehabilitation and litigation process is much better managed.

“That expertise in the lawyers would naturally lead them to appreciate good case managers and recognise bad ones. That would lead to more scrutiny of what case managers do, and so raise the standards.

“Equally, good case managers would - as they do now - help the family to identify the non-specialist or inappropriate solicitor or barrister and support them in finding a good alternative.

"Developing the relationship between the two professions, and enlarging their knowledge, would inevitably improve standards.”

Copies of both reports can be found on the NR Times website at www.nrtimes.co.uk.

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CLINICAL PRACTICE

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Fatigue is a common phenomenon which can peak immediately after a brain injury. Here Professor Mike Barnes, of the National Neurological Rehabilitation Chambers, provides an overview for NR Times readers.

Fatigue is a subjective phenomenon – it cannot be measured objectively.

It can be caused or exacerbated by depression, anxiety and stress, as well as a lack of regular and restorative sleep, chronic pain, seizure-related fatigue, hydrocephalus and hormonal abnormalities like hypothyroidism.

Nutritional deficiencies (e.g. B12), anaemia and serious illness such as leukaemia, renal failure and hepatitis are also associated with the symptom.

If these can all be ruled out then it can be concluded that the fatigue is neurogenic.

Evaluation should include, screening for the above, medication, triggers, aggravators, alleviators, measuring how it impacts physically and mentally and when.

In doing this, pacing and chunking activities (i.e. putting certain activities together) is helpful.

Drugs are certainly not first line treatment but, in resistant cases, methylphenidate may help.

Fatigue is common but often overlooked, presenting as limited energy reserves to accomplish ordinary daily activities, or extreme exhaustion which may appear suddenly during mental activity.

The activity may appear trivial, but after brain injury it takes greater energy levels to deal with cognitive and emotional situations.

Normally the brain works in an energyefficient way due to well-functioning ion channels and amino acid transport systems among other processes.

After brain injury, some of these systems are down-regulated and, when mental energy requirements are high, these processes do not function to their full capacity. Fatigue is therefore most severe immediately after brain injury.

It is difficult to be precise about how common fatigue, or particularly mental fatigue, is because of different definitions and study methodologies.

However, in follow-up studies, the frequency of prolonged fatigue is from 16 to 73 per cent, and there is no correlation with severity of primary injury, age or time since injury. In those with fatigue three months after injury it remained stable over prolonged periods.

A typical characteristic of pathological mental fatigue after TBI is that the mental exhaustion becomes pronounced during sensory stimulation or when cognitive tasks are performed for extended periods without breaks.

There is a drain of mental energy where the environment is noisy and hectic, leading to an invasion of the senses with an overload of impressions.

Disproportionally long recovery periods are required after overload.

Fatigue fluctuates during the day, and it can appear very rapidly after which it is not possible for the person to continue with the activity.

Common associated symptoms include impaired memory and concentration capacity, slowness of thinking, irritability, tearfulness,

sound and light sensitivity, sensitivity to stress, sleep problems, lack of initiative and headache.

For many people, this mental fatigue is the dominating factor which limits their ability to lead a normal life with work and social activities. For most people, fatigue subsides after a period of time while, for others, this pathological fatigue persists for several months or years even after the brain injury has healed. Interestingly however, as many as 30 per cent of family or friends interpret fatigue as laziness.

Theories about the mechanism of fatigue suggest that cognitive activities require more resources and are more energy-demanding after brain injury than usual.

There is no robust theory about the mechanism but there is speculation that the symptom may be caused by dysfunction of the astrocytes, the most common supporting cells in the brain. As a consequence, nerve cell communications do not function properly.

Following TBI there is a neuroinflammation with down-regulation of astroglial glutamate transport systems.

Glutamate signalling is essential for information processing, including learning and memory formation. Low levels and fine-tuning of extracellular glutamate are necessary to maintain high precision in information processing, and thereby high efficiency in the information handling within the central nervous system.

One way to restore this dysfunction is

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CLINICAL PRACTICE

to stimulate Na+ /K+ -ATPase along the dopaminergic circuits which regulate attention and executive functions. Possible candidates for doing this are methylphenidate and the dopaminergic stabilizer OSU6162.

Assessment can be made using the MFS, a multidimensional questionnaire containing 15 questions. It incorporates affective, cognitive and sensory symptoms, duration of sleep and daytime variation in symptom severity.

The questions concern the following: fatigue in general, lack of initiative, mental fatigue, mental recovery, concentration difficulties, memory problems, slowness of thinking, sensitivity to stress, increased tendency to become emotional, irritability, sensitivity to light and noise, decreased or increased sleep as well as 24-hour symptom variations.

It has been found that information processing speed, attention and working memory were significantly reduced after brain injury (both mild TBI and TBI) compared to controls.

Among the cognitive functions, processing speed was found to be a significant predictor for the rating on MFS. Research indicates that mental fatigue and depression must be treated as separate constructs and it is also important to make this distinction for the purposes of therapeutic strategies.

Long-lasting mental fatigue is characterised by

• Mental fatigue that has persisted for at least a month • A sum of scores from the MFS of 10.5 points or above

Typical symptoms include:

• An unusually rapid drain of mental energy upon mental activity • Impaired attention and concentration capacity over time • Following over-exertion, a long recovery time disproportionate to the exertion level • Diurnal variation of the fatigue symptom with the fatigue often being better in the mornings and worse in the afternoons and evenings; variations from one day to the next

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• Usually one or several associated symptoms • Mood swings, irritability and stress intolerance • Trouble with memory • Sleep problems • Sensitivity to, or intolerance of light and loud noise • Headaches following over-exertion

There is currently no effective treatment for mental fatigue. For many people, there is an increased risk of doing too much and becoming even more fatigued. Today, the most important recommendations are to adapt to the energy available by doing one thing at a time, resting regularly and not overdoing things.

When mental fatigue is present, it is important to adapt work as well as daily activities to levels that the brain can manage.

However, this is challenging for most people and it may take a long time, even years, to adapt to a sustainable level. It may also be difficult for the person to learn by himself/ herself and it can take several years of considerable struggle, frustration, despair and depression, to find the right balance between rest and activity. Professional support is required but this can be hard or impossible to find especially when mental fatigue continues for many years.

Treatment strategies include:

• Take regular breaks • Encourage rest before becoming over-tired • Try to work at a steady pace, taking one task at a time with short working periods, and prioritise the tasks • Plan the days’ activities or the activities for the week in a diary or journal. Avoid overexertion.

The use of strategies is important. By resting the brain as much as possible the mental energy will be restored. However, the brain and the individual also need positive experiences and stimulation to ensure wellbeing. It is difficult to achieve this balance

Research suggests mental fatigue and depression must be treated as separate constructs

between rest and stimulation.

When mental fatigue becomes a prolonged problem, it is essential to be able to alleviate the symptoms.

Options include: the mindfulness-based stress reduction (MBSR) programme, pharmacological treatments, using neurostimulant substances as methylphenidate which affects dopamine and norepinephrine signalling, and potentially a new substance not currently available on the market, OSU6162, which is a dopamine and serotonin stabiliser.

Research results demonstrate that mindfulness practice may be a therapeutic method well-suited to subjects suffering from mental fatigue after brain injury. One reason why MBSR is effective may be that this treatment offers strategies to better handle stressful situations appropriately and economise the use of mental energy.

In an open randomised study, methylphenidate significantly improved mental fatigue dose dependently as assessed with the MFS. In two randomised, double-blind and placebocontrolled studies, statistically significant alleviation of mental fatigue was found after a stroke or TBI by OSU6162 during four weeks’ treatment with active drug. However, the numbers of patients in these studies were small (21 TBI and 19 stroke victims).

www.nnrc.org.uk

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INTERVIEW

WHY VITAL REHAB ROLE SHOULD NOT BE OVERLOOKED 44

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INTERVIEW

Rehab medicine physicians play a key role in speeding recoveries and minimising long-term damage. Their contribution is increasingly under threat in the UK, however, believes Diane Playford, the outgoing president of the British Society of Rehabilitation Medicine (BSRM). Here she considers the future of the profession in an interview with NR Times.

“Numbers are our biggest challenge as a profession,” says Diane Playford as she ponders the current state of the nation for rehab medicine physicians.

“Many medical specialties are small in the UK compared to our European colleagues, but rehab medicine is disproportionately small.”

This quarter brought an end to Playford’s twoyear tenure as president of the British Society of Rehabilitation Medicine (BSRM).

She stepped down with the profession in which she has worked since 1995 at a crossroads.

In the UK there are currently around 180 consultants in rehab medicine, with a further 40 currently in trainee positions.

These professionals play a key role in shaping and improving rehab outcomes – yet their limited number means many patients and multidisciplinary rehab teams cannot benefit from their expertise or skills.

Various factors in the UK have resulted in the influence of the role shrinking in recent decades.

Among them is the legacy of changes in the 70s and 80s that saw the two physical medicine fields, rheumatology and rehabilitation, veer off in separate directions.

This shift left doctors in the latter camp focused largely on the most severe disabilities, and therefore a limited number of cases.

This means patients with conditions that are managed with input from rehab medicine physicians in other countries do not receive such access to these professionals in the UK. This must change however, says Playford, or the standard of UK rehab compared to other

nations could suffer over time.

“We need to articulate the role of the rehab physician more clearly. We also need to grow links with other specialties, many of whom use a rehabilitation approach but their core skills lie elsewhere.”

She points to pain clinics as an example area where rehab physicians are being underutilised.

“The physicians or anaesthetists within a pain clinic will be technically very skilled at treating pain but may not be so good in the skills needed to help people function in everyday life. Rehab physicians have something to offer here, as do physiotherapists and psychologists. The more comprehensive the multidisciplinary team, the better the outcomes will be. It is relatively unusual to have a rehab physician in a pain clinic in this country but fairly common in other countries.”

Musculoskeletal rehab is another field in which Playford believes rehab physicians could and should play a greater role in patient care.

“We have very few rehab physicians working in musculoskeletal rehab. In other countries, musculoskeletal is a significant field for them; and this includes recovery from musculoskeletal trauma, management of lower back pain and vocational rehab for people with musculoskeletal conditions.

I think there is a growing recognition that rehabilitation services for people with musculoskeletal conditions, particularly trauma, are very limited in the UK and need to be developed.

NRTIMES 45

INTERVIEW

“Currently these services are largely delivered by physiotherapists, many of whom have practitioner or consultant practitioner roles and are very skilled. But when things get very complex, then the rehab physician has a contribution that at the moment is not being made.”

The historic move of rehab physicians towards only the most severe disabilities means many now work only with patients with combined physical and cognitive difficulties. As a result, members of the musculoskeletal population, whose difficulties are mostly physical, may miss out on their expertise.

This differs overseas, partly because of the impact of insurance-based systems in creating a stronger drive to get people back to work.

“In other countries, rehab medicine has grown because of its very close links with vocational rehab. And that has also been very badly neglected here,” she says.

Another trend in the UK that is not widely replicated elsewhere is skilled therapists increasingly taking up the role of autonomous practitioner.

“This has many advantages, but there is also a disadvantage. The multidisciplinary team may face a complex problem that requires some of the skills of a physician, such as the prescription of medication, or consideration of medication in the context of other factors.

Unless you have a prescriber on your therapy team - and there are some physiotherapy and nurse prescribers – you have to wait to get a referral to a rehab physician who has those skills.

“Alternatively, you can refer to a GP, but you can’t have that multidisciplinary conversation about the various factors contributing to spasticity and the best way that can be treated without a physician on the team.

“In not having physicians on the team, patients are missing out on prompt treatment.

They are not getting the right treatment at the right time.

“I think teams that do have easy access to rehab medicine physicians really value their contribution. Many teams who’ve never had that experience would also value the opportunity of working with them.”

An example scenario could be a patient needing an expert physician to consider the

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Diane Playford, outgoing president of the BSRM

In other countries, rehab medicine has grown because of its very close links with vocational rehab impact of drugs which manage tone, but which also may have sedative, cognitive, mood and bladder function implications.

“It’s self-evident that having someone whose expertise lies in this area, amongst other things, will have a valuable contribution to make to the timely management of that patient.

“Multidisciplinary teams work well when they identify all the contributing factors to a patient’s presentation and to their function very accurately. That means they target their interventions in the right order and in the right way for that patient. That makes the team much more efficient.”

Against widespread inconsistencies, Playford believes the UK would benefit from a single, cohesive voice representing the multidisciplinary rehab team and its patients on a national level.

“It is right and proper that there are individual disciplines and professional concerns. If what patients need is access to a multidisciplinary rehab team, however, then there perhaps ought to be a voice that represents all the disciplines and all the patients.”

Stroke is an area where the collective voice of multiple professional groups has been able to influence change and improvements in care delivery, she says.

“Stroke has been strongly led by the stroke physicians, working with multidisciplinary teams. The big national meeting, the Stroke Forum, is a really successful clinical and academic gathering which is influential in the development of stroke services and the dissemination of skills and knowledge around stroke.

“A really successful multidisciplinary environment has been created that drives the stroke agenda and this has been manifest in all sorts of things. You can see it in the nature of multidisciplinary data collection and the Royal College of Physicians’ multidisciplinary guidelines for example. We don’t have the same powerful voice for other conditions.”

Could such achievements in the stroke field be replicated more widely in rehabilitation?

“You could, of course, find a voice for all traumatic brain injury, which is a very large and growing problem. You could have another for MS or Parkinson’s. But if you look at the skills required in multidisciplinary teams to treat those conditions, there is a lot of commonality.

“We perhaps need to separate generic skills that allow us to deliver treatment to large groups of patients from the very specialist skills that may need to be offered at a regional rather than district level. Some patients need a disease or symptom-specific team – but that’s a relatively small number of patients.

“Ultimately, most patients want treatment close to home from a team that feels comfortable managing it. A louder and more collaborative representation of multidisciplinary rehabilitation teams would perhaps help to ensure more patients receive this.”

Despite the many challenges facing UK rehab teams, there are plenty of reasons for optimism about future of rehab, says Playford.

She is particularly enthused about advancements in neuroscience.

“This is a really exciting time for rehab generally. There is an enormous amount of interest within the neuroscience community in targeting treatments to individual patients.

INTERVIEW

This will allow us to stratify patients in terms of their individual pathologies and genotypes and target the right treatment to the right patient. It also allows us to do the sort of clinical trials that need to be done that demonstrate positive results.

“At the moment, we tend to use treatments that we know will work in some patients, but we don’t know which those patients are.

We therefore waste a lot of time and energy treating the wrong patients. The advances in neuroscience will allow us to match the interventions to the patient and that’s really exciting.

“Soon we’ll be able to achieve really sophisticated imaging, enabling us to do real time analyses of, for example, EEG or polysomnography data. This will allow us to choose our drugs more carefully, based on the impact they are having on people’s cortical activity.

“They will also enable us to enhance neuro-

plastic changes, allowing patients to make better recoveries.

“Then there is the technical stuff around robotics, exoskeletons and smart fabrics for lightweight orthotics. There is lots of really exciting stuff going on.”

In future Playford would welcome more research projects specifically focused on rehab. These are in short supply partly because there are so few rehab centres colocated with university hospitals, she says.

Also, there are “very few” trained academic rehabilitation medicine physicians.

“There is some really good neuroscience looking at preventing disability, in the context of an acute neurological event. But there is very little looking at how we improve treatments for people in the sub-acute and chronic phases.

“There is funding available for research into the early stages of rehab, in terms of preventing disability in the acute injury,

but very little for later on. We need to meet this challenge and create more successful rehabilitation research platforms.”

Meanwhile, having stepped down from the BSRM helm in October, Playford believes the organisation remains in good health, but with a tough remit to deliver.

“The BSRM is a relatively small society which reflects the size of the rehab medicine community in the UK. I have to say I think it punches above its weight. It has produced a number of very useful guidelines and guidance and it is well represented within the clinical reference groups, the Department of Health, on national committees and at the Royal College of Physicians.

“The challenge for the society is to make sure that medical students and trainees are aware of rehab medicine as a specialty; and we are taking some steps to raise awareness of it as a fascinating career choice. Certainly it’s one I have never regretted.”

NRTIMES 47

INSIGHT

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INSIGHT

TICKING TIMEBOMB A common heart condition can trigger debilitating strokes in young people - but an operation that can help prevent a recurrence is no longer available on the NHS in England, leaving sufferers fearing for their future.

Peter Jackson reports.

NRTIMES 49

INSIGHT

Sian Mara, 35, was enjoying a holiday in Cuba with her husband Jason and her 12-year-old daughter when it happened.

Sian, from Chard in Somerset, recalls: “It was just a normal day, I’d been swimming and playing volleyball in the pool with my daughter, went upstairs to get ready for dinner, had a shower and then I had a sudden headache. I felt as though I was going to pass out, so I sat on the floor so I didn’t fall and then I just couldn’t get back up again.’’

Fortunately there was a doctor on site at the hotel who was summoned by Jason. Sian was taken to hospital where she had CT scans and she was told she had had a stroke. Completely paralysed down her left side, she spent the next two and half weeks in Cuba until she was cleared to fly home.

“It was completely out of the blue,’’ she says.

“I’m only 35 and was probably in the best health I’ve ever been in, going to the gym six days a week. I’d never had any health issues and no family history of medical problems.

The last time I’d been to the GP before that was two years before for a urine infection.’’

At Musgrove Hospital back in the UK, they did a series of tests and found that Sian’s stroke had been caused by a hole in the heart or patent foramen ovale (PFO). This could cause another stroke.

Every newborn baby has a hole in their heart between the two upper chambers, but this normally closes shortly after birth. When this doesn’t happen, there can be an increased risk of strokes.

There is a procedure – called a PFO closure – to close a hole in the heart but the NHS in England decided to stop paying for this operation in 2016. Now, victims face a lifetime of medication or having the operation done privately, which can cost up to £20,000.

Initially, Sian was relieved that Musgrove had found the underlying reason for her stroke. She recalls: “Because I was worried

they weren’t going to be able to find a cause.

I thought that if you know what has caused it you can prevent it happening again.’

“I was shocked when I was told there was a procedure they can do to close the hole, a day-surgery procedure not even requiring a general anaesthetic, but, unfortunately, it’s not funded.

“In my naivety, I thought maybe I can have it done privately but, to my horror, I was told that it costs £18,000.

“Obviously I was born with this PFO and have been walking around with it for 35 years but now I know it’s there, it’s like I’m walking around with a timebomb, waiting for it to go off again.’’

Sian, who, ironically, is the deputy practice manager in a GP’s surgery, is now on medication to prevent blood clots. She is waiting for an appointment with a cardiologist in Bristol to see whether she can be classed as an exceptional case to qualify for individual funding.

Strokes, which occur when the blood supply to the brain is cut off, are the third most common cause of premature death and a leading cause of disability in the UK. It has been estimated that about 57,000 people in England suffered their first stroke in 2016. While the rate of first-time strokes in the population has fallen by 8% since 2007 and the percentage of first-time strokes suffered by over-70s dropped from 64% to 59%, during the same period, the rate for those aged 40 to 59 increased from 15.3% to 20%.

There appear to be no figures on the number of strokes caused by PFO, but they are clearly far from rare. Sian herself knows another man under the age of 50 in Chard, population 13,000, who has had a PFO-related stroke. A brief search of the internet reveals scores of cases, many of which have been reported in the press, of relatively young people who have suffered and have then been turned down for

The benefits of this operation are undeniable and allow survivors to move forward without living in fear

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corrective surgery on the NHS. Lydia Payne, from near Hereford, was a fit and active 34-year-old. One Sunday in 2016, she and her partner Philip had walked their dog and had their roast dinner, then she was sitting down making a phone call when her life changed.

The left side of her face froze, she couldn’t speak and her left side was paralysed.

Fortunately her partner Philip recognised the stroke symptoms and rushed her to hospital where she was diagnosed as having had a stroke and was given emergency treatment.

She had no history of high blood pressure or high cholesterol but tests revealed a large PFO. Recovery for Lydia has been long and hard.

It has taken her two years to fully regain her speech, but her walking is still not yet back to normal.

Lydia says: “I saw a heart specialist who basically told me it’s not a case of if, it’s a case of when. She said, `You have the PFO, I cannot tell you the plaque isn’t going to build again and fire off another clot. You need the surgery but, I’m really sorry, as it stands, NHS England won’t fund this surgery’.’’

Like Sian, she found that to have the operation done privately would cost around £20,000.

Apart from the obvious concerns about her health and physical disabilities, the stroke has brought a whole raft of difficulties in its wake.

“My personality changed overnight. I went from being a confident outgoing person to somebody who just too anxious to leave her own house,’’ she says.

Previously she had had her own body-piercing business but she has had to close that and rely on welfare.

“Unfortunately all of the services are geared to deal with older people,’’ she says.

“So, for someone of my age, they didn’t know where to send me for physio. We went private in the end because it was going to

INSIGHT

be 18 months before I could get a neurology appointment, but we paid £350 and I got to see him within four days.’’

She was put on blood thinners and statins but the medication brings its own problems.

“I’ve had to go on meds which make me ill.

The clopidogrel [a blood thinner] is horrible and the bruises are insane and my joints hurt.

"It’s horrible medication and I’m going to be on medication for life.’’

She had a hysterectomy at an earlier age, but cannot take HRT because of the blood clot risk, which puts her at greater risk of certain cancers.

Lydia has two boys, aged 15 and 11. Her eldest son is registered blind.

“Obviously he’s really dependent on me, but I haven’t been well enough, so he has to spend more time with his dad and that’s really frustrating.’’

According to an NHS report on patent foramen ovale closures prepared by the Newcastle and York External Assessment

Centre, carrying out the procedure in NHS England is not cost-effective.

It states: “The lifetime costs to the NHS of a patient receiving a PFOC procedure was estimated at £12,956. For patients managed by medical therapy, the total cost per patient was estimated at £7,596.’’

That’s a saving of £5,360. But, as Sian points out: “If I was to have another stroke, it’s going to cost the NHS a hell of a lot more than £5,000. Prevention is better than cure.’’

Different Strokes is an organisation which supports younger stroke survivors through active peer support and independent recovery.

Lauren McMillan from the organisation says: “Unfortunately stories such as Lydia’s and Sian’s are not rare.

"Since funding for PFO closures was cut by the NHS in 2016 we are increasingly hearing from families who are living the same nightmare.

“In 2017 new data was presented at the European Stroke Organisation conference in Prague, following a study which demonstrated

that closing the hole can reduce the chance of another stroke by nearly 80%.

"At Different Strokes we feel it is absolutely vital that this funding is urgently re-instated.

"The long-term benefits of this operation are undeniable and allow survivors and their families to move forward without living in constant fear of another stroke.”

Sian Mara echoes those sentiments.

She says: “My recovery has been so hard and the exercises have been so difficult and the thought that I’ve done all that for nothing, just to have another stroke is terrible.

"It’s the last thing I think about when I go to bed and the first thing I think about in the morning. It’s so frightening to live with.

“This is not just a headache, this is people’s lives. It has such a profound effect, not just on the person, but on their family as well.’’

Find more on this issue online, by visiting differentstrokes.co.uk.

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CONFERENCE

FACING UP TO THE FUTURE NR Times reports from UKABIF's 10th annual conference, which examined the many changes and challenges facing brain injury professionals in coming years.

The shuffling and whispers of the conference crowd ceased entirely when Yorkshireman Stephen shared his story. The brain injury survivor recalled the last thing his wife ever said to him before the overdose that killed her.

“I just want my old Steph back”, he quoted to a watching audience of delegates.

Even battle-hardened brain injury professionals with years of experience in the field were captivated by his account, which

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formed part of a video montage to introduce the new Time for Change report.

The All-Party Parliamentary Group for Acquired Brain Injury’s paper is designed to highlight the many challenges facing brain injury care in the UK and was covered in detail at UKABIF’s 10th annual conference in London.

However tragic, testimonies like Stephen’s provide invaluable support to those trying

to push brain injury higher up the national agenda. Patients with first-hand experience of brain injury able to share it in conversations not littered with medical jargon are vital allies for the lobby fighting the corner for neurorehab services.

But the cold hard facts of ABI may be equally persuasive to decision makers at Westminster, delegates at the Royal Medical Society were told.

CONFERENCE

Chris Bryant MP, chair of the ABI APPG, said at the UKABIF event: “If you take an 18-year-old who has been in a road traffic accident and maybe needs three or four people’s support to be able to clean, wash, feed and dress themselves, and you take them to a place through rehabilitation where they only need one person, then across a lifetime you have saved the taxpayer millions and millions of pounds. So there is a real saving for the whole of society.

“This is not the argument I prefer using.

The argument I prefer is, if we can give someone a better quality of life then that’s the moral imperative, not a financial one. But there are people who will respond well to that other argument.”

Bryant, one of several speakers at the event in November, focussed his speech on the ongoing lobbying campaign surrounding the issues and recommendations set out in its APPG report.

“I’m dedicated to this cause because ABI is a hidden epidemic. I’ve campaigned so hard because it impacts on so many government departments.”

He also reiterated the mission of the APPG to unite government departments and drive change for brain injury survivors.

“The campaign is far from over. I feel that it’s

only just begun and there are other issues we haven’t even touched yet.”

Also taking to the stage was Colonel Alan Mistlin, chair of the clinical reference group for rehabilitation and disability. He detailed the continual development of specialised neuro-rehab.

Neuro-rehab is crucial in order to maximise recovery after ABI and remains one of the most cost-effective interventions available to the NHS, he said. It reduces acute hospital stay, provides functional independence and facilitates a return to work. Yet there are large variations in provision and access to services and a lack of neuro-rehab personnel, he warned. “The current services are probably not what we would set up now, but there’s lots of work in progress,” he said.

The updated Rehabilitation Prescription (RP) was discussed at the event, by Hannah Farrell, of University Hospitals Birmingham NHS Foundation Trust.

The RP documents the rehabilitation needs of the individual with ABI and identifies how those needs should be addressed longer term.

Farrell reminded delegates that the RP should be given to the patient on discharge and a copy sent to their GP to facilitate ongoing rehabilitation.

Farrell said: “The RP is not just a tick box

exercise to generate money. It should be used for every patient with rehabilitation needs and a copy sent to their GP; this is a major challenge going forward.”

Meanwhile, the much-debated issue of brain injuries in the prison system was discussed.

Brain injury can make offending behaviour more likely, while being an ‘offending type’ can make having a brain injury more likely.

Also, having a brain injury can make people far more prone to the effects of alcohol which also increases their probability to offend.

If we can give somebody a better quality of life then that's a moral imperative, not a financial one

NRTIMES 53

CONFERENCE

The prevalence of ABI in the offender populous is significantly higher than in the general population. There is clear evidence of the different causality of brain injury between men and women in prison, with females being at greater risk of repeated brain injury from domestic abuse. Dr Ivan Pitman of the Brain Injury Rehabilitation Trust (BIRT), discussed the findings from BIRT’s Brain Injury Linkworker service in a women’s prison which is based on a stepped care model and focusses on identifying brain injury and implementing interventions to support the offender.

On the issue of young people with an ABI, Professor Nathan Hughes, University of Sheffield said: “Recognising brain injury is key to being able to provide the right support in schools, to prevent disengagement, exclusion and possible offending behaviour.”

He explained the issues surrounding the recognition and response to ABI and the discriminatory criminal justice processes. He also emphasised the need to change systems and processes to ensure young people obtain appropriate and timely support, and ultimately prevent their propensity to go on to offend.

“The cornerstone of disability law is that the employer has a duty to make reasonable adjustments for the employee,” said Emma

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Satyamurti, Leigh Day looking at the challenges of returning to work following a brain injury.

She reviewed examples of ‘reasonable adjustment’ including a change of tasks, location, working hours and different approaches to managing absence and performance behaviour.

Dawn Astle concluded the formal conference programme by telling the story of her father, Jeff Astle, the footballer nicknamed ‘the King’ by fans, who won five caps for England.

Jeff was the first British professional footballer to die from chronic traumatic encephalopathy (CTE), aged just 59.

The impact of sport-related concussion on late dementia, CTE and other chronic neurological conditions is uncertain and further research is needed, she warned.

The Jeff Astle Foundation was established in 2015 to raise awareness of brain injury and to provide support to those affected.

The UKABIF event was sponsored by Cygnet Health Care, Elysium, Irwin Mitchell solicitors, Leigh Day and Sintons Law.

Cheers to a college champion

A physiotherapy manager has been recognised for her groundbreaking work with college students.

Recognising brain injury is key to being able to provide the right support in schools, to prevent disengagement, exclusion and possible offending behaviour

Verity Fisher, of the National Star College in Ullenwood near Cheltenham, is this year’s winner of the UKABIF Stephen McAleese Award for Inspiration.

She received her award at UKABIF’s 10th annual conference from the parents of Stephen McAleese, who sustained a brain injury after contracting meningitis when he was 15 and dedicated his life to promoting understanding of brain injury. He passed away in 2010.

CONFERENCE

Verity said: “I’m really pleased to receive this award. The young people at the college have a wide range of physical disabilities, acquired brain injury and associated learning difficulties, and my work is all about helping them achieve greater independence. I try to ensure that as many opportunities as possible are made available to our students.”

Among Verity’s achievements was the initiation and organisation of a therapeutic and learning ski trip to Andorra for young people.

The project originated as a one-week trip for those with moderate physical disabilities which was then rolled out to also include those with very complex disabilities.

Verity worked closely with the Andorran resort, ski school and airlines, as well as the Andorran ambassador, to ensure that all the young people at the college had

the opportunity to learn to ski.

The trip has developed as a key element of the college’s therapeutic and education programme. Her work has been recognised by many organisations, including Ofsted and the Care Quality Commission, during inspections at National Star, and was covered by the BBC breakfast programme.

UKABIF chair Andrew Bateman said: “Verity’s innovation, enthusiasm and determination are a great inspiration to us all. Her excellent work has also been carried through in the form of training packages which, alongside the publicity generated, will have a far wider impact in raising awareness of acquired brain injury.”

The winners of the UKABIF Film Award 2018 were also announced at the recent conference in London.

They were Kathryn Cann for the County

THE ROYAL BUCKINGHAMSHIRE CENTRE FOR REHABILITATION AND SPECIALIST NURSING CARE

KINGS LODGE CENTRE FOR COMPLEX CARE

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info@royalbucks.co.uk

Durham and Darlington NHS Foundation Trust, Lauren Nicholas for the Royal Hospital for Neuro-disability, Anne Johnston and Jeremiah Humphreys-Piercy.

Whitehall screening

MPs will have the chance to undergo the brain injury screening process that many would like to see implemented in prisons across the UK. The move, announced by MP Chris Bryant at the UKABIF annual conference, will see ministers at Westminster being given the option to complete the test in January.

The initiative, led by the Disabilities Trust and supported by the acquired brain injury APPG, is aimed at raising awareness of the importance of brain injury detection and management in the prison system.

“We hope at least two thirds of MPs will take part,” Bryant said.

Find us on

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A WHOLE SOLUTION IN ONE LOCATION Including high dependency nursing care, consultant led medical care and assessments, interactive rehabilitation and specialist diagnostics and reporting.

BEST IN CLASS TREATMENT Whether as an inpatient or outpatient, we provide access to leading specialists, an integrated team, specialist diagnostics and cutting edge technology.

PUTTING THE PATIENT FIRST We work collaboratively with all stakeholders to access their unique needs, ascertain required bespoke objectives and agree timescales for achieving them.

TREATMENT PACKAGES

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EVENTS

DATES FOR YOUR DIARY

DEC 18/ 1

The Headway Mince Pie Morning.

A chance to raise money to help those affected by brain injury across the UK, while sharing some lovely Christmas treats with friends, family or colleagues.

Find details on www.headway.org.uk.

3

7

Headway Annual Awards.

Please check with contacts beforehand that arrangements haven’t changed.

Events organisers are also asked to notify us at the above address of any changes or cancellations.

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Care expert workshop (chapter 1 – what is a care expert?), part of the Jacqueline Webb Webinar Series.

Join the series to discover how you can maximise your potential with Jacqueline Webb. By the end of the 4 part series you will have a clear idea of whether care expert work is right for you and how you might get involved.

Visit www.jwebb.co.uk/webinar to book a free spot.

Encephalitis Conference 2018 in London.

The only event in the world dedicated exclusively to encephalitis, bringing together professionals with various expertise and knowledge, ranging from etiology, pathogenesis, and diagnosis, to treatment, recovery and rehabilitation of people affected by encephalitis. 9am – 6pm, Macfarlanes LLP London, 20 Cursitor Street, London, EC4A 1LT. Find details online at www.encephalitis.info/conference2018.

To list your event in NR Times contact chloe@aspectpublishing.co.uk

11

Once a year, Headway's members, friends and supporters come together to pay tribute to some very special people: brain injury survivors, carers, volunteers and campaigners whose personal achievements have earned the admiration of everyone around them. Their stories are moving and inspirational. The Dorchester, London.

Find details on www.headway.org.uk.

JAN 19/ 9

Care expert workshop (chapter 2 – becoming a care expert?), part of the Jacqueline Webb Webinar Series.

Join the series to discover how you can maximise your potential with Jacqueline Webb. By the end of the 4-part series you will have a clear idea of whether care expert work is right for you and how you might get involved.

Visit www.jwebb.co.uk/webinar to book a free spot.

30

Care expert workshop (chapter 3 – the benefits of care expert work), part of the Jacqueline Webb Webinar Series.

Join the series to discover how you can maximise your potential with Jacqueline Webb. By the end of the 4 part series you will have a clear idea of whether care expert work is right for you and how you might get involved.

Visit www.jwebb.co.uk/webinar to book a free spot.

EVENTS

FEB 19/ 7

Growing the new you: brain injury rehabilitation as a different experience.

Conference features presentations by leading national clinicians, practitioners and researchers which will describe and challenge the misconceptions held by some about clinical rehabilitation. Also, how should the concept of neurorehabilitation be understood in real life? What are the positive changes and opportunities that can be identified by a perception that rehabilitation is about reaching one’s potential, particularly for children and young people whose brains are still developing, rather than rehabilitating ‘back to’ something?

One Great George Street, Westminster, London.

Find details at www.abisolutions.org.uk.

MAR 19/ 13 - 16

World Congress on Brain Injury.

Toronto, Canada.

See www.ibia2019.org for bookings.

19

New and Would Be Workshop Part 1 2019.

26 - 27

European Neuro Convention.

Europe’s only trade event for brain and spine. Event focuses on four areas of neuro: diagnostics, surgical, rehabilitation and brain stimulation. Delegates can attend speaker sessions, interactive masterclass sessions and supplier presentations.

Some 200 innovative exhibitors will be in attendance.

National Exhibition Centre, Birmingham. www.neuroconvention.com

MAY 19/ 10 - 11

1st International Conference on Teleneurorehabilitation.

Crotone, Italy.

See http://www.1ictnr.it for full details or email l.romania@istitutosantanna.it for more information.

14 - 15

8th International Conference on Brain Injury and Neuroscience.

16

Family Matters: Understanding and addressing family needs after brain injury.

What do we know about the family experience of acquired brain injury, what do family members need, what do they say works for them and how do we change practice to accommodate and integrate their knowledge, their love and their needs?

What do professionals need to understand better in order to respond appropriately to the trauma experienced by family members, to support true partnerships with people who are motivated by love and care but who have needs of their own too? How can we ensure our input and intervention also addresses family adjustment?

Conference provides opportunities throughout the day to share experience, learn from each other and be inspired by the stories told.

Presented by Head First LLP. Grange Tower Bridge Hotel, London.

Find details on www.abisolutions.org.uk.

22 - 24

5th European Stroke Conference.

Milan, Italy.

Full details available on http://esoconference.org/2019.

New inventions in the field of Brain Injury and Neuroscience.

Paris, France.

Full details available on www.braininjury. conferenceseries.com.

BABICM’s ‘New & Would Be’ workshop is regarded by case management companies and our members as the definitive introductory course for new and aspiring brain injury & complex case managers.

Holiday Inn, Gatwick. www.babicm.org for more details.

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CLOCKING OFF

Spaced out Budding space tourists may be rethinking their plans to shoot for the moon.

For a new study into cosmonaut brains shows space travel can have a profound effect on grey matter. Brain scans reveal that long stays in space can cause the brain to shift upward in the skull and lessen the amount of protective fluid surrounding the brain. Scientists analysed MRI scans of cosmonauts before and after trips either on NASA’s Space Shuttle or to the International Space Station. The longer the stay, the greater impact on the brain recorded.

45 and counting A double celebration is in order for the Spinal Unit Action Group, which supports current and past patients of North West Regional Spinal Injuries Centre in Southport. Firstly, the voluntary group has reached the ripe old age of 45 – no mean feat, as anyone in the third sector can testify. Secondly, it has received the Queen’s Award for Voluntary Service –the highest honour given in recognition of the achievements of a voluntary organisation.

Congratulations all round.

Mind reading These could well be the end days for the little white lies that get us through life.

Those minor untruths like ‘it’s delicious’ and ‘no, it’s perfectly in proportion’ may soon be outlawed thanks to technology.

Neuroscientists have finally found a way for humans to read each other’s minds. They hooked up a brain connection allowing three

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people to share their thoughts via a Tetrisstyle game. It works through a combination of electroencephalograms (EEGs), for recording the electrical impulses that indicate brain activity, and transcranial magnetic stimulation (TMS), where neurons are stimulated using magnetic fields.

BrainNet "allows three human subjects to collaborate and solve a task using direct brainto-brain communication", researchers said.

In the experiment, two 'senders' were connected to EEG electrodes and asked to play a Tetris-style game involving falling blocks. They had to decide whether each block needed rotating or not. To do this, they were asked to stare at one of two flashing LEDs at either side of the screen, which produced different signals in the brain that the EEG could pick up on.

The study was carried out by researchers at Washington and Carnegie Mellon universities.

They believe it could be stepped up to connect whole networks of people. Imagine the possibilities – and the dangers.

Cheers to that!

Rising star of the brewing trade, Cloudwater, is donating all funds raised from one of its tipples to brain injury causes, in memory of road accident victim John-Paul Cassidy.

The Manchester brewing company created a special West Coast IPA in dedication to John-Paul – a prominent figure in the local beer scene who died after a car crash in April. Brain injury charity Headway supported his family in hospital and will be handed vital funds to fuel its important work via sales of the beer. John-Paul’s fiancée, Lucy Lovell, said: “Making a beer seemed like the perfect way for us to pay tribute to him…

We decided on a classic West Coast IPA because it was a style that kicked off many people's journey into modern beer, and it was one of John-Paul's favourites.”

www.trurehab.com

enquiries@trurehab.com

Find us on social media

01942 707000

TRU Residential Services

Haydock Lodge

Lyme House

Supports service users under the Mental Health Act and offers a transitional pathway towards community services. This unit also offers detoxification programmes and specialist early intervention neurorehabilitation.

Neurobehavioural unit which provides specialist rehabilitation which addresses cognitive deficits, aggression, impulsivity and socially inappropriate behaviour.

Chapel House

Ashton Cross

Is the pathway to community integration, including long term support. Provides opportunities to increase daily living skills and independence, whilst still receiving support and developing motivation.

Offering supported living environment for service users who have completed the rehabilitation element of the ABI pathway, concentrating on quality of life in a least restrictive homely setting for short or long term care.

The TRU pathway is flexible, with availability to engage at any stage.

member of

The UK’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?

Contact us for more information.

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

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@RehabChambers