NR Times (Q1 2018) by aspectpublishing

neuro rehab

issue 5 Q1 2018

times

spin doctor Free wheeling on the road to recovery plot thickens The power of stories after serious injury

QUARTERLY

stronger together BRAIN INJURY LOBBY FINDS ITS VOICE

curious case In search of the missing rehab prescriptions

robot dawn

A revolution in patient data

signal lost

When the brain can't visualise

Christchurch Group is the UKâ&#x20AC;&#x2122;s leading provider of neurological rehabilitation, caring for and rehabilitating patients with complex brain and spinal injuries and neurological conditions in eight highly specialised centres across the country.

Our interdisciplinary therapy teams and industry-leading clinicians are committed to providing the very highest levels of rehabilitation through individually tailored, goal driven rehabilitation plans for all of our residents. All Christchurch Group centres offer residents a rehabilitation pathway delivered through expert Lead Consultants working alongside psychologists, behavioural specialists, nurses, occupational therapists, physiotherapists, speech and language therapists, dieticians and rehabilitation assistants. To find out more or discuss the funding options available, please contact our referrals team on 07595 655239 or email referrals@christchurchgroup.co.uk

Neurobehavioural rehabilitation

Specialist nursing

Spinal injury rehabilitation including ventilated care

Long term maintenance

Stroke rehabilitation

Outpatient rehabilitation

Community support and outreach

For more information visit:

ChristchurchGro

www.christchurchgroup.co.uk

Christchurch Group Neurological Rehabilitation

welcome

EDITOR'S NOTE

Welcome to the latest edition of NR Times, your quarterly update on issues and developments impacting on professionals working with brain and spinal injuries. In NHS spending terms, neuro-rehab is a mere spec on the national healthcare map. Making itself heard as decisions about the future of public health are pondered has therefore been difficult-to-impossible in recent years. As every other healthcare discipline shouts for more funding, support and consideration, the brain injury lobby’s voice is one of many. On the occasions that it is in earshot of high ranked decision-makers who are actually listening, they may be surprised to learn of rehab economics. Yes, treatments are relatively expensive and labourintensive – but the long-term savings they could offer the NHS far outweigh upfront costs. Other lesser known neuro-rehab truths include the sheer volume of undiagnosed brain injuries and the many hidden challenges which impact on all angles of a patient’s life. We hope new focus on brain injury issues by crossparty MPs will help to get such messages to the top table. Chris Bryant MP insists it will, in our feature about the newly formed All-Party Parliamentary Group on acquired brain injury. Beyond governmental support, collaboration among brain injury professionals is proving a powerful force in improving patient outcomes. The rehab prescription has been hailed as a major step forward since it became part of official guidelines. But various recent conditions have conspired to stop it living up to its full potential. In this issue, we see how all professions involved with

trauma patients are pulling together to ensure a huge opportunity for change is not missed. In our first of four editions of 2018, we also report on some of the emerging trends which may shape your work this year. Rehab cycling, new approaches to diet and artificial intelligence are a few of the stops we visit. We also explore goal-setting, the potency of stories in recovery and aphantasia - the strange brain condition that robs the mind's eye of pictures. Read on for all this and more.

Andrew Mernin Andrew@aspectpublishing.co.uk

Published by Aspect Publishing Ltd in association with UKABIF Aspect Publishing, 20-22 Wenlock Rd, London, N1 7GU Registered company in England and Wales. No. 10109188. All contents ©2018 Aspect Publishing Ltd. Features labelled 'sponsored' are paid for by our sponsors who support the production of this magazine.

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contents

news The latest from the world of neuro-rehab.

signal lost When the brain can't visualise.

perfect harmony Get the inside track on neurologic music therapy.

26 30

food for thought Why rehab diet plans may need an urgent rethink.

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soaring ambition Your guide to goal-setting in rehab.

contents

spin doctor Free wheeling on the road to recovery.

40 cover story Brain injury lobby finds its voice.

access denied

Fighting back against funding rejection.

44 48

rise of the robots A new dawn in data beckons.

curious case In search of the missing rehab prescriptions.

ever after The role of stories in young people's recovery.

events

Dates for your diary in the months ahead...

clocking off

Notes from the sidelines of neuro-rehab. NRtime

analysis

Global commission calls for urgent action Healthcare professionals, researchers and policymakers have been urged to play their part in arresting the world’s accelerating TBI crisis, as NR Times reports. Traumatic brain injury (TBI) looks likely

Among several recommendations, the report

to remain the largest global contributor to

urges an international consensus on definitions

neurological disability until at least 2030,

and standardised epidemiological monitoring of

an international commission has forecast.

TBI, to allow accurate measurement of key

The predicted burden of disability

factors such as incident rates and access to care.

surrounding TBI across the world “far exceeds”

The report also underlines the value of

that related to dementia and cerebrovascular

centralised care, explaining: "There is growing

disease, says the Lancet Neurology

evidence of a relationship between management

Commission’s extensive report.

in high-volume centres and improved outcomes,

The paper estimates that the global annual

which suggests that care for the most critically ill

cost of TBI could be as high as US$400bn

patients should be centralised.

(£296bn), or around 0.5 per cent of gross

"Substantial gains could be made from provision

world product.

of adequate prehospital care, appropriate referral

Between 50 and 60 million people experience

and continuity along the chain of care, with early

a TBI each year, while studies suggest half the

access to effective rehabilitation,” it adds.

world's population will have at least one TBI in their lifetime. The report aims to pave the way for what it calls a “long overdue”, concerted effort to tackle the global TBI problem, which is a "public health challenge of vast, but insufficiently recognised, proportions”. It sets out priorities and expert recommendations for all parties involved in TBI, including healthcare professionals, researchers, funders and decision-makers. Over 70 expert authors representing institutions spanning the globe contributed to the report, with a further 250 contributors via the International Initiative for Traumatic Brain Injury Research (InTBIR). A lack of uniformity in the characterisation and management of TBI in different countries around the world is a continual theme throughout the report.

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The commission also calls for: • More research into links between TBI and increased risk of later neurological diseases, such as stroke and dementia • Better strategies for TBI prevention to deliver cost savings that could fund improved access to care and research • Professional sporting organisations to lead by example by immediately removing anyone with a suspected concussion from play • Healthcare policies which improve access to acute and post-acute care, reducing the burden of TBI on patients, families and society • More "robust evidence" on potential medical, surgical and rehabilitation interventions to inform guidelines and improve outcomes • Studies aimed at improving the precision of diagnosis, classification and characterisation of TBI

• The development of a "validated set of quality indicators" to enable the benchmarking of care quality • Greater collaboration between public and private funding bodies - as well as industrial partners to support the development of national and global biorepositories and databases which could foster vital TBI research • The introduction of validated outcome measures which factor in the overall burden of disability caused by TBI, driving better clinical management and aiding the high quality research needed to take TBI treatments forward.

analysis

Global TBI in numbers US$400bn: Estimated global financial burden of TBI each year 50 to 60 million: Approximate annual number of TBIs internationally 6.5 years: The typical gap between clinical research and its translation into improvements in care (or between study publication and systematic review) 5 to 15 per cent: The possible attributable risk of dementia as a result of TBI – an area which needs more investigation, says the commission 30 to 40 per cent: Mortality rate of severe TBI (according to observational studies on unselected populations) 1 million: number of deaths caused by TBI each year (As cited in the Lancet Neurology Commission, referencing various studies.)

are experiencing more TBI caused by falls among the elderly. In low and middle-income countries, TBIs as a result of traffic accidents are increasing, according to the report. International conflict

Despite billions of dollars of investment, no effective drugs exist for the acute setting

and sports-related concussions are also adding to growing worldwide TBI rates. The report concludes: "Clinicians and researchers, in consultation with patients and their families, need to play their part in taking these recommendations forward. Collaboration

A dearth in TBI-relevant drug treatments is

It continues: "Huge opportunities exist for

between funding agencies will be required to

particularly concerning to the commission. It states:

improvements in characterisation of initial severity,

coordinate the strategy and conduct of research,

"Despite investment of many billions of dollars by

outcome and prognosis, and for more accurate

and commitment from policymakers will be

pharmaceutical companies, no effective drugs exist

tracking of disease processes, by building on the

essential to facilitate research and ensure timely

for treatment in the acute setting – a failing due, in

current scientific advances in modern neuroimaging,

implementation of research outputs.

part, to insufficient targeting of therapies to patients

genomics, disease biomarker development, and

“Implementation of prevention strategies and

in whom the relevant mechanism is active. We

pathophysiological monitoring. Developments

provision of optimum clinical care in different

need better methods to characterise TBI to allow

in these technologies could facilitate the goals of

settings should be a priority for clinicians and

identification of patient subgroups with a common

precision medicine in TBI.”

policymakers alike. Integration of all these efforts

dominant disease mechanism, who are more likely

The commission comes amid rising levels of TBI

should deliver rich dividends in terms of better

to respond to specific treatments – a concept now

in countries of all economic status. High-income

and more cost-effective care, with huge benefits

being popularised as precision medicine.”

nations like the UK, with its ageing population,

for patients, their families, and society as a whole.”

MORE NEWS

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Herbal pep may aid stroke rehab New link between brain injuries and criminality Lesions in certain areas of the brain can increase the likelihood of an individual carrying out criminal behaviour, according to a US study. When brain lesions occur within the brain network responsible for morality and valuebased decision making, they can predispose a person toward criminal behaviour, scientists say. Researchers examined MRI and CT scans of individuals known to have carried out crime. One group of 17 cases had a definitive correlation between criminal behaviour and a brain lesion. A second group of 23 had an implied correlation when researchers were unsure whether the brain lesion occurred before or after the criminal behaviour. In both groups, the lesions were in different areas of the brain. The study, published in Proceedings of the National Academy of Sciences, is the first systemic mapping of brain lesions associated with criminal behaviour, a medical phenomenon referred to as acquired sociopathy. It was led by Ryan Darby of Vanderbilt University Medical Center (VUMC). Researchers used neuro-images

compiled from healthy volunteers organised into a "connectome" - a brain activity map. While the lesions were in different brain areas, they were all connected to the same brain network. "We looked at networks involved in morality as well as different psychological processes that researchers have thought might be involved; empathy, cognitive control and other processes that are important for decision making," Darby said. "We saw that it was really morality and value-based decision making, reward and punishment decision making that the lesions were strongly connected to," Darby added. "This is a relatively new approach that we have developed." Darby has been involved in a series of recent studies with senior author Michael Fox, assistant professor of Neurology at Harvard Medical School. "We have previously used it to understand other disorders where it wasn't really clear why brain lesions in different locations caused hallucinations or delusions. In those diseases, it was also found that it was a common brain network connected to the same areas. We were the first to apply this to looking

Honour for rehab champion

The herbal extract ginkgo biloba could help the brain recover after a stroke, scientists claim. The remedy is widely believed in China to boost memory and fight depression. In a Chinese trial of 330 stroke patients over six months, the supplement was found to influence better cognitive skill scores on tests. Those behind the relatively small study published in the online journal Stroke & Vascular Neurology â&#x20AC;&#x201C; now aim to carry out a longer, more robust trial. All 330 participants began the trial within a week of having an ischaemic stroke. Their average age was 64.

at criminal behaviour." The study cautioned against over-interpretation of its findings, with the authors noting that violence or crime occurs in approximately nine per cent of patients with traumatic brain injury and 14 per cent of patients with a frontal lobe injury. Older research from the UK suggests the proportion of the prison population with a brain injury may be much higher than this; with some studies citing that up to 40 per cent of prisoners have been brain injured in the past.

Professor Lynne Turner-Stokes, former president of the British Society of Rehabilitation Medicine, has been awarded an MBE for services to rehab. Serving as president in 2014 to 2016, Professor Turner-Stokes has been heavily involved in BSRMâ&#x20AC;&#x2122;s work since 1989. She is also a professor of rehabilitation at Kingâ&#x20AC;&#x2122;s College London.

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Potential game-changer for rehab

A video game which enables healthy volunteers to play with patients with physical impairments may improve rehab outcomes, a study suggests.

Neuro-rehab stars recognised

Brain injury care champions were recognised recently at the annual UK Acquired Brain Injury Forum (UKABIF) Awards in London. Titles handed out as part of UKABIF’s 9th Annual Conference included Clinician of Year - presented to Vicky Richards, case manager and co-founder of Case Management Cymru. Vicky has many years of experience working with people with brain injury and headed up the rehabilitation team at Rookwood hospital in Cardiff for many years before becoming a case manager. Judges noted that she “has a real empathy for her patients and her relaxed and confident demeanour enables her to gain the trust of her patients… She brings calm where there is chaos and within the world of brain injury rehab this is a

Researchers at Imperial College London designed a video game to enable patients recovering from various conditions, including stroke, to play against healthy volunteers as a form of rehab. Balloon Buddies is designed to create a level playing field by allowing healthy participants to support the less abled player. Researchers found that this type of collaboration makes it more rewarding for the less-abled partner, more challenging for their partner and overall more fun for both, as they have to continuously work together to score points. They found that the performance of the patient was boosted when they played with a healthy volunteer, compared to when playing the game on their own. Also, the poorer a patient’s single player performance was, the greater the improvement seen when they played with another during dual-player mode. The findings, published in the Journal of NeuroEngineering and Rehabilitation (JNER), suggest that by increasing engagement with healthy volunteers, compared to playing alone, patients

priceless gift”. The UKABIF Lawyer of the Year 2017 was awarded to Mark Hollinghurst of Switalskis Solicitors. Mark has had a long career in complex personal injury "helping the most seriously injured individuals through a highly personal legal service", judges said. He also co-founded Headway Yorkshire East Coast and remains its chair. The Stephen McAleese Award for Inspiration was awarded to Zoe Binnie. In 2015 Zoe fell off of her bike and suffered a brain injury, her recovery was medically complicated and these were testing times for her and her husband. Like many people, Zoe was discharged with no community rehabilitation, useful information or support in place. Zoe was well supported by her husband, colleagues and friends and she has, over time, done incredibly well, UKABIF said. Zoe and her husband decided they wanted to do something to highlight the benefits

may be more likely to increase the effort they put into training, which could ultimately lead to greater gains in physical performance. While the pilot study was limited to 16 patients, researchers believe this form of rehab through gaming may be beneficial to patients with other illnesses such as musculoskeletal injuries, arthritis, and cerebral palsy. Dr Michael Mace, lead author, said: “Video games are a great way of providing repetitive exercise to help patients recover from debilitating illnesses. "However, most video games are designed for users to play on their own, which can actually discourage and isolate many patients. "We developed the Balloon Buddies game to enable patients to train with their friends, family or caregivers in a collaborative and playful manner. "The technology is still being developed, but we have shown that playing jointly with another individual may lead to increased engagement and better outcomes for patients.”

She brings calm where there is chaos in the world of brain injury rehab of cycle helmet use. They developed Strike: The Helmet Project, which culminated in an art exhibition and auction at which 27 artists were asked to decorate a cycle helmet. Boy George attended the event and bought a work of art created by Grayson Perry. Zoe received her award 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. The UKABIF Awards took place at the Royal Society of Medicine. MORE NEWS

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Baby brain injuries investigated Parents of babies who suffer severe brain injuries at birth will have access to an independent investigation of their care from April. Health secretary Jeremy Hunt announced recently that the newly developed Healthcare Safety Investigation Branch (HSIB) would take over from NHS hospitals in investigating the estimated 1,000 baby and mother fatalities and unexplained serious injuries which occur on maternity wards each year. The move will reportedly speed up resolutions and save the NHS from spiralling legal bills. The 2035 target of halving the number of stillbirths, neonatal and maternal deaths and birth-related brain injuries was also brought forward to 2025.

Mr Hunt said in a speech: "The tragic death or life-changing injury of a baby is something no parent should have to bear, but one thing that can help in these agonising circumstances is getting honest answers quickly from an independent investigator. "Too many families have been denied this in the past, adding unnecessarily to the pain of their loss. "Countless mothers and fathers who have suffered like this say that the most important outcome for them is making sure lessons are learnt so that no-one else has to endure the same heartbreak. These important changes will help us to make that promise in the future." As we reported last quarter, compensation claims for newborns suffering brain injuries or cerebral palsy soared by 23 per cent in 2016/17 to 232, to a collective value of ÂŁ1.9bn.

A report published last year by the Royal College of Obstetricians and Gynaecologists concluded that most baby brain injuries in labour are avoidable. Its findings were based on analysis of 1,136 stillbirths, neonatal deaths and brain injuries which occurred in 2015. A separate study published in November estimated that five babies in every 1,000 born in England have a condition or symptoms linked to brain injury. Researchers at Imperial College London and Chelsea and Westminster Hospital NHS Foundation Trust, analysed data on babies born between 2010 and 2015 to assess the number that may have sustained brain injury at or soon after birth. The research, published in the journal Archives of Disease in Childhood, found that 3,418 babies suffered conditions linked to brain injury at or soon after birth in 2015. This equates to an overall incidence rate of 5.14 per 1,000 live births. For preterm births (babies born at or less than 37 weeks) the rate was 25.88 per 1,000 live births, more than seven times greater than the rate for full term births, which was 3.47 per 1,000 live births. Meanwhile, a new standardised definition of brain injuries in newborn babies, developed by a group of experts convened by the Department of Health, consists of a range of conditions and signs that are known to be related to brain injury. These include seizures or fits, bleeding within the brain, stroke just before or at birth, infections like meningitis and damage caused by oxygen deprivation.

Stroke, squirrels and the power of SUMOylation...

Squirrels may be an unlikely source of inspiration in the search for new ways of protecting the brain in stroke patients. The squirrelâ&#x20AC;&#x2122;s brain enters a protective process during hibernation which apparently prevents any ill effects, despite a lack of oxygen, essential nutrients and blood flow to the brain. It is a cellular process known as SUMOylation which kicks into overdrive in hibernation to protect the brain. Furthermore, this process can be artificially boosted with injections of the ebselen enzyme â&#x20AC;&#x201C; which was also found to boost SUMOylation in the brains of healthy mice. The next great leap is to investigate whether this process could help to reduce the risk of brain damage, paralysis and speech problems in stroke patients. Lead author on the US study, Joshua Bernstock, says: "If we could only turn on the process which hibernators appear to use to protect their brains, we could help protect the brain during a stroke and ultimately help people recover." MORE NEWS

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company news sponsored feature

Home from home service expands A pioneering care service, which bridges the gap between residential rehab and independent living, is being rapidly rolled out across Yorkshire and the Humber, the North West and the Midlands.

In addition to delivering high quality specialist residential nursing care, Exemplar also works closely with commissioners to develop bespoke solutions that respond to the demands of the Transforming Care Agenda and create meaningful pathways of care for service users on rehab pathways. This includes the creation of OneCare houses and apartments. Exemplar Health Care’s OneCare service offers people with complex needs, including those caused by brain injury and other neurological conditions, a way of living independently, while also having access to specialist care. Exemplar has developed and specially-adapted 19 individual houses and flats close to, or on the site of, eight of its 25 nurse-led care homes. OneCare services allow complex care to be

extended from the main home, enabling individuals to live independently or with support, depending on their needs. The service, already available at nine locations in Yorkshire and the Midlands, is being rolled out to locations in the North

Exemplar’s locations

West and Humberside. This year will see new OneCare properties opening in Wakefield, Tipton, Birmingham, Liverpool, Doncaster, Sheffield, Barnsley, Sutton-inAshfield and Rotherham. Each OneCare property is accessed separately from the main home and caters for the individual’s accessibility, sensory and other bespoke needs. Most OneCare residents use the service as part of Exemplar’s extended rehab pathway, with the move helping service users to become more independent and reach their potential. Other service users access it as an intermediate pathway of care to help them maintain their independence, or through a sole-occupancy service with bespoke features meeting their complex needs. Operations director Amanda Lighton says: “We created OneCare after finding a gap in provision for service users no longer requiring 24-hour care but needing the security of support for potential complications such as epileptic fits or tracheostomy problems, for example. The service has had a massive impact on individuals and their families. One client’s daughter told us she was amazed to see her dad making a cup of coffee in his own kitchen again. It is these little things that come with independent living which make a real difference. "Service users have to do things for themselves and this creates a big increase in motivation. As a result of this, we’ve seen a marked increase in service users accessing further education and employment opportunities.” Exemplar Health Care provides specialist nurse-led care for adults with complex needs arising from enduring mental ill-health, neuro disability, profound learning disability, brain injury and stroke.

Sarah's story

Sarah developed initial symptoms of Huntington’s disease in her early thirties, eventually moving into a OneCare house at age 38, as the progression of her disease meant she could no longer live alone. She accesses physiotherapy through the main home and is supported with daily care needs, while maintaining a high calorie diet. In her two years with OneCare, her support plans have continually developed to meet her changing needs. Remaining independent for as long as possible is Sarah's top priority and OneCare enables her to do so.

For referrals call 01709 565 700 or email referrals@exemplarhc.com. See www.exemplarhc.com for more info.

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Flying the flag for Parkinson’s research Fruit flies may hold the key to new breakthroughs in Parkinson’s treatment and diagnosis. Researchers at the University of York observed fruit flies with a genetic mutation linked to Parkinson’s. Their findings potentially point to new ways of measuring Parkinson’s symptoms and understanding causes of the condition. Parkinson's has a number of possible causes,

but a small minority of cases are linked to genetic changes. A change in the LRRK2 gene known as G2019S is probably the most common genetic variant linked to Parkinson's. In the UK, around one in 100 people carry it. Scientists observed how the fruit fly used its proboscis (the tube used to eat) to reach out and drink a sugary substance. This mimicked the movement humans make

when reaching out a hand for a drink - one of the standard tests for Parkinson's. In flies carrying the faulty LRRK2 gene, researchers observed that the proboscis reached out more slowly and shook. The discovery could provide a precise way of measuring tremor associated with Parkinson's in fruit flies – giving researchers a new tool to find drugs that could reverse this symptom. David Dexter, deputy research director at Parkinson's UK, said: "Modelling the symptoms of Parkinson's can help researchers understand the condition better, but can be difficult to do in animal models such as flies. "New and improved technologies and methods allow a greater understanding of the causes of Parkinson's, and also serve as a tool for rapid development of new drugs that can protect nerve cells against damage or directly improve movement. "We hope this new technique will allow researchers to delve deeper into the biology of Parkinson's, opening new doors and accelerating the delivery of new and better treatments".

Momentum builds for MND campaign

New centre gets green light

Plans for a new neuro-rehab centre in Shropshire have been given the go-ahead. Shropshire Council has approved plans by Bradeney House care home near Bridgnorth to build a £2.5m brain injury rehab centre within its grounds. The centre will be supported by neuropsychiatrists, neurological physiotherapists, occupational and speech and language therapists.

A charter set up to improve understanding of and respect for people with motor neurone disease has now been backed by 56 local authorities. Stockport Council is the latest authority to sign up to the MND Charter, driven by the Motor Neurone Disease Association. The charter stipulates that people with MND have the right to early diagnosis and information, to access quality care and treatments and to be treated as individuals, with dignity and respect. It also states that they deserve to be supported in maximising their quality of life, while carers must also be valued and respected. MORE NEWS

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One in three miss out on MS benefit

that they should be awarded the benefit. Michelle Mitchell, chief executive of the MS Society, said: “PIP is meant to help manage the

In too many cases assessments fail to reflect the barriers people with MS face

Nearly a third of people with MS who apply for

extra costs of living with a disability and assist

the Personal Independence Payment (PIP) for

people to be more independent. But it’s a tougher

the first time are refused the benefit, the MS

system than DLA, with much stricter rules. In too

Society reports.

many cases, assessments fail to reflect the barriers

Figures obtained by the charity from the

people with MS face.”

Department for Work and Pensions show that

The charity called on the government to review

between 2013 and 2017, 31 per cent (4,100) of new

PIP to make sure assessments accurately reflect

single day. Under PIP, 36 per cent more people

claims from people with MS were found to be

the reality of living with MS.

with multiple sclerosis receive the highest rate of

not eligible.

A DWP spokeswoman defended the government’s

support than under the previous DLA system.

A further six per cent qualified for PIP initially, but

record on enabling people with MS to access

“More than 2.6 million PIP decisions have been

were turned down after a reassessment.

the benefit

made, and of these eight per cent have been

The figures do not include people being reassessed

She told newspapers: “PIP assessments look at

appealed and four per cent have been overturned.

for the Disability Living Allowance (DLA).

how individuals are affected by conditions such

"In the majority of successful appeals, decisions

Following appeals from people turned down for

as multiple sclerosis over the majority of days

are overturned because people have submitted

PIP, 65 per cent of independent tribunals ruled

in a year, rather than just assessing ability on a

more evidence.”

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

TRU Vocational Rehabilitation Services Promoting and enabling clients with acquired brain injury to reach their vocational potential.

member of

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VOCATIONAL PATHWAY As part of the admission process, Service Users are encouraged to explore each vocational setting of interest to them. These placements enable Service Users to develop skills that are enjoyable and meaningful, in addition to potentially setting long term employment goals. A Service User’s vocational goals are underpinned by their overall rehabilitation aims and person centred programme, with inclusion of the Trans-disciplinary Team of Clinical, Support and Qualified Vocational Coaches. Vocational settings monitor and assess Service Users’ achievements and provide feedback within the review process to progress with further goal development. The overall aim is for Service Users to return to work or a meaningful occupation. Whether it is on a voluntary basis or paid work, this will be vital towards achieving independence.

VOCATIONAL PLACEMENTS The A Team/Maintenance • TRU Radio • Wood Shop Mechanics/Valeting • Computers • Graphic Design Kitchens • Arts,Craft & Design • Horticulture & Gardening Dance & Drama Group ...and many more

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Brain mapping breakthrough A new and relatively simple technique for mapping the wiring of the brain has shown a correlation between how well connected an individual's brain regions are and their intelligence. In recent years, there has been a concerted effort among scientists to map the connections in the brain - the so-called 'connectome' - and to understand how this relates to human behaviours, such as intelligence and mental health disorders. Now, in research published in the journal Neuron, an international team led by scientists at the University of Cambridge and the National Institute of Health (NIH), US, has shown that it is possible to build a map of the connectome by analysing conventional brain scans taken using a magnetic resonance imaging (MRI) scanner. The team compared the brains of 296 typically-developing adolescent volunteers. Their results were then validated in a cohort of a further 124 volunteers. The team used a conventional 3T MRI scanner (with '3' representing the strength of the magnetic field); however, Cambridge has recently installed a much more powerful Siemens 7T Terra MRI scanner, which should allow this technique to give an even more precise

mapping of the human brain. A typical MRI scan will provide a single image of the brain, from which it is possible to calculate multiple structural features. This means every region of the brain can be described using as many as ten different characteristics. Researchers showed that if two regions have similar profiles, they are described as having "morphometric similarity" and it can be assumed that they are a connected network. They verified this assumption using publically-available MRI data on a cohort of 31 juvenile rhesus macaque monkeys to compare to "gold-standard" connectivity estimates in that species. Using these morphometric similarity networks (MSNs), the researchers were able to build up a map showing how well connected the 'hubs' - the major connection points between different regions of the brain network - were. They found a link between the connectivity in the MSNs in brain regions linked to higher order functions - such as problem solving and language - and intelligence. "We saw a clear link between the 'hubbiness' of higher-order brain regions - in other words, how densely connected they were to the rest of the network - and an individual's IQ," says Jakob Seidlitz, a PhD candidate at

We saw a clear link between IQ and how densely higher-order brain regions were connected the University of Cambridge and NIH. "This makes sense if you think of the hubs as enabling the flow of information around the brain - the stronger the connections, the better the brain is at processing information." While IQ varied across the participants, the MSNs accounted for around 40 per cent of this variation. It is possible that higherresolution multi-modal data provided by a 7T scanner may be able to account for an even greater proportion of the individual variation, say the researchers. "What this doesn't tell us, though, is where exactly this variation comes from," adds Seidlitz."What makes some brains more connected than others? Is it down to their genetics or educational upbringing, for example? And how do these connections strengthen or weaken across development?" Watch this space for answers. MORE NEWS

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A holiday retreat for people with catastrophic injuries and their families has been launched in rural France by a UK case management firm.

Community Case Management Services (CCMS) has transformed a dilapidated farmhouse in an idyllic corner of Normandy into an accessible holiday venue. The property offers people with disabilities a place in which to relax on holiday with friends and loved ones in the heart of picturesque northern France. With a fully accessible ground floor living area and five en-suite bedrooms, 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 retreat has a private, disabled-friendly living area on the ground floor with an adapted kitchen, ceiling track hoist, specialist bathing facilities, profiling bed and access to two bedrooms for carers. 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.

It sleeps 16 people overall, comfortably 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 Cherborg ferry port. Local places of interest include the Mont Saint-Michel island commune, the Christian Dior Museum and the D-Day landings site. It is also a short drive from the wild beach, Plage de la Vielle Eglise, where thrill-seekers can experience the exhilarating sport of sand surfing. 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 high level catastrophic complex injuries and high-level care needs, for whom a separate annexe has been provided with state of the art overhead tracking, Aquanova bathing facilities, wet room, double profiling bed and an adapted kitchen area to allow for as much independence and privacy as possible. There are two twin en-suite bed sitting rooms above the ground floor adapted area to provide for the client’s own support team/personal assistants to be accommodated and contacted as required at any time. A hot tub is currently being installed and a swimming pool is planned for the future. “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.

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.

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Brain injury linked to intestinal damage Scientists have uncovered a two-way link between traumatic brain injury (TBI) and intestinal changes. These interactions may contribute to increased infections in patients, and could also worsen chronic brain damage, say US researchers. A study by the University of Maryland School of Medicine (UMSOM) found that TBI in mice can trigger delayed, long-term changes in the colon; and that subsequent bacterial infections in the gastrointestinal system can increase posttraumatic brain inflammation and associated tissue loss. TBI’s significant effect on the gastrointestinal tract is well evidenced. Until now, however,

scientists have not recognised that brain trauma can make the colon more permeable, potentially allowing harmful microbes to migrate from the intestine to other areas of the body, causing infection. It is not clear how TBI causes these gut changes. A key factor in the process may be enteric glial cells (EGCs), a class of cells that exist in the gut. These cells are similar to brain astroglial cells, and both types of glial cells are activated after TBI. Following TBI, such activation is associated with brain inflammation that contributes to delayed tissue damage in the brain. Researchers don’t know whether activation of EGCs after TBI contributes to intestinal injury or is instead an attempt to compensate for the injury. TBI reportedly makes people 12 times more likely to die from blood poisoning, which is often caused by bacteria. They are also 2.5 times more likely to die of a digestive system problem, compared to those without such

injury, according to data cited by UMSOM. Trauma professor and lead researcher Alan Faden said: “These results indicate strong two-way interactions between the brain and the gut that may help to explain the increased incidence of systemic infections after brain trauma and allow new treatment approaches.” The researchers also focused on how gut dysfunction may worsen brain inflammation and tissue loss after TBI. They infected the mice with Citrobacter rodentium, a species of bacteria that is the rodent equivalent of E. coli. In mice with a TBI who were infected, brain inflammation worsened. Furthermore, in the hippocampus, a key region for memory, the mice who had TBI and were then infected lost more neurons than animals without infection. This suggests that TBI may trigger a vicious cycle, in which brain injury causes gut dysfunction, which then has the potential to worsen the original brain injury.

Funding boost for technology body The NIHR Brain Injury Healthcare Technology Co-operative has been awarded £1.25m to continue its work in nurturing new technologies for people with brain injuries for a further five years. The group aims to drive medical technology innovation for patients after an acquired brain injury. Its work will continue under the new banner of a Medtech Co-operative following the funding boost. The co-operative has expertise in eleven clinical theme areas reflecting the patient pathway from initial injury to final outcome and reintegration into the community. It has a UK wide remit and works with patients, NHS organisations, universities, other research bodies, charities and industry. Its aim is to provide a "structured and systematic approach to find areas of unmet need that might be amenable to a technology-based innovation".

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Brain injury group gets underway at Westminster

The All-Party Parliamentary Group for Acquired Brain Injury (ABI) was officially launched at a well-attended gathering of experts and MPs recently. Important discussions took place on topics including an overview of ABI and rehabilitation services, rehabilitation for economic growth and the global impact of trauma. There will now be four roundtables in the coming months to discuss issues vital to improving the care of individuals with brain injuries. These include: • Causes of ABI, trauma and neuro-rehab service provision • Crime and offending behaviour • Education • Concussion in sport A report with recommendations will be produced after each meeting, with dates of the meetings to be confirmed. See page 40 for more on the APPG.

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Why people power is the key to the success of Elysium Neurological As Elysium Healthcare celebrates its first birthday we take a look at how the rapidly growing provider has placed neurological services at the heart of its offering and how its people are the key to its success… Elysium Neurological is the neuro division of Elysium Healthcare – one of the UK’s fastest growing private healthcare providers. In the last 12 months it has acquired some of the UK’s leading neurological rehabilitation and complex care services to become an emerging leader in the field. From sites in the Midlands and Middlesbrough to Herefordshire and Darlington, Elysium Neurological is staking a claim to become one of the UK’s leading providers of neurological services. These centres provide both neurological rehabilitation and long term complex care for people with brain and spinal cord injuries, together with long term support for those with progressive neurological conditions such as Huntington’s or motor neurone disease (MND). But the brick and mortar sites are just one part of the story; what is setting Elysium Neurological apart is the culture at the heart of the organisation, and its people. They are the key to delivering the highest quality complex care services for residents. That’s why Elysium Healthcare CEO Joy Chamberlain has put such a strong focus on hiring the most well-regarded experts into Elysium Neurological.

Joy says: “If you want to be the best you have to hire the best people, with the most experience and expertise. We are determined to deliver the highest quality neurological rehabilitation and care for our residents and to do this we need a broad spectrum of knowledge and clinical expertise to provide these complex and multifaceted treatments and care pathways.” One of those leaders is Professor Nick Alderman, who brings with him a wealth of knowledge and expertise in neurobehavioural rehabilitation and will be developing bespoke services and pathways for Elysium Neurological. The first of which will be Gladstone House, located in a customised building on the same site as Adderley Green in Stoke-on-Trent. He says: “In studies conducted over many years, challenging behaviours have been recognised as posing a greater longterm impediment to community integration after a brain injury than physical disabilities. Neurobehavioural rehabilitation attempts to alleviate social handicap arising from neurobehavioural disability. I will develop high quality services to support this patient group, and in doing so will provide a new patient pathway for Elysium Neurological which will complement and support the existing neurological services and broaden the expertise and knowledge within the wider organisation. Other new recruits include Dr Jenny Brooks (consultant neuropsychologist) and Shaun O’Gara (neurobehavioural lead nurse), who will support the development of the neurobehavioural rehabilitation services. To deliver the best neurological pathways it is essential to have a diverse range of clinicians. Elysium Neurological’s physical rehabilitation pathways, meanwhile, are staffed with a

dedicated team of nurses, physiotherapists, occupational therapists, speech and language therapists and consultant neuropsychologists, with sessional support from consultant neuropsychiatry, music therapy and consultants in rehabilitation medicine, alongside GP cover. Joy Chamberlain adds: “Our clinical teams lead and innovate to deliver truly person-centred services where each individual is at the heart of everything. During our first year we recruited 1,000 new staff including 244 nurses and 565 healthcare team members. “We want to work in partnership with local services to complement what they have and provide the services that are in the greatest need. A key priority this year is to continue investing in our team by providing excellent staff development opportunities and benefits; and recruiting personnel with a range of expertise to complement existing teams. “We care for our staff team. Without them we could not deliver exceptional care.” Although a new market entrant, Elysium Neurological appears to be well on track to become the leading provider of personcentred neurological care across England.

For referrals call 07387 108 625 or email rachael.chamberlain@elysiumhealthcare.co.uk Visit www.elysiumhealthcare.co.uk for more information.

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Having a mind’s eye without pictures can be a challenging but strangely creative experience. Three years after helping to define the phenomenon, known as aphantasia, scientist Adam Zeman is now turning his attention to its links with brain injuries, he tells Andrew Mernin.

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t's nearly three years since Adam Zeman helped to introduce the world to a new species of brain condition. Yet the letters and emails from people who believe they have aphantasia - an inability to summon images to the mind’s eye - have barely stopped arriving since. Sack-loads of mail, amounting to some 12,000 reported cases, have built up at his University of Exeter Medical School base. This is despite there previously being only sporadic published examples from history of people unable to voluntarily picture things in their mind. Zeman, a professor of cognitive and behavioural neurology, is now investigating various avenues related to the phenomenon, including a possible link to brain injuries and neurological conditions. “The most common cause for not having a mind’s eye is being born that way, but there are examples in literature describing people losing it through some form of brain injury,” he says. The first reported case of visual imagery lost due to brain injury was publicised in 1883 (Charcot & Bernard). A much later study (Farah, 1984) concluded that the vividness of self-reported visual imagery can be dimmed by a brain injury. It can also vary widely among healthy individuals (McKelvie 1995), and be affected by depression, anxiety and “depersonalisation” (Sierra, 2009). Zeman says: “I’m keen to revisit Farah’s work in particular to assess what is happening in brains that have been damaged in such a way that they can no longer visualise. We want to work out whether there are common areas of the brain or processes affected. We don't yet know what the proportion of people with brain injuries with aphantasia is, but it would need to be a moderately bad brain injury to either cause focal brain damage or damage to some connections. On the other hand, it obviously couldn't be so severe that the person can't notice or describe what has happened.” Studies into mental imagery were pioneered by Francis Galton who, in 1880, published evidence of a wide variation in subjective vividness among survey respondents; some participants described no power of visualising, he reported. Over a century later, a study showed that 2.1 to 2.7 per cent of general population participants claimed no visual imagination (Faw, 2009). Zeman and fellow researchers coined the term aphantasia based on the classical Greek word for imagination, phantasia, defined by Aristotle as the faculty/power by which a phantasm, is presented to us. In 2010 they reported a particularly pure case of imagery generation disorder (Zeman et al., 2010). A 65-yearold man had become unable to summon images to his mind's eye following a coronary angioplasty.

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The subsequent paper was picked up by the popular science periodical Discover, prompting people with similar experiences to make contact. These 21 individuals had a lifelong reduction of visual imagery and were analysed via a questionnaire (Zeman, Dewa & Della Sala, 2015). The results, published in 2015, delivered several interesting findings. While respondents could not visualise when prompted by the questionnaire, most reported that they experienced involuntary imagery. These usually occurred in dreams or in the form of ‘flashes’ during sleep onset. Most respondents didn't become aware of their condition until their teens or 20s; it was only in conversation or through reading that they'd stumbled upon the fact that most people can visualise in their minds eye. This new proof of an inability to voluntarily visualise caught the world's attention and triggered a fresh wave of letters and emails from hundreds, and then thousands, of people with potential aphantasia. Work is now underway to gain deeper insights into the condition. Questionnaire responses have been elicited from 2,000 more cases, while a separate study involves brain imaging and neuropsychology comparisons between groups with low, moderate and very vivid mind’s eye imagery. The results of both aspects of the research are expected to be published later this year. “We have a mountain of data and are trying to work out whether aphantasia comes in different shapes and sizes, which we think it does. It's associated with problems related to autobiographical memory and, in some cases, with autistic spectrum disorder. So, there are lots of subgroups. Of course, prosopagnosia [an inability to recognise faces] and autobiographical memory problems can occur through brain injury, and we've had around 50 individuals contact us whose aphantasia was seemingly caused by brain injury, stroke or meningitis, and we want to look at them more closely.” Investigations into the root causes of aphantasia, and how it impacts on individuals, require the factoring in of multiple regions of the brain. “Visualising involves a network of brain regions. To visualise you have to make a conscious decision to do so. This involves the decision-making regions in the front and parietal lobes. Visualisation also involves memory-related regions if you are visualising something you encountered in the past which is stored in your memory. Then you also

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I just learned something about you and it's blowing my goddamned mind!

activate visual areas; we know from functional imaging that people do use visual areas of the brain to visualise.” While acquired aphantasia may be thought of as a condition, causing various challenges such as facial recognition problems, for people with lifelong aphantasia it is merely considered a different way of experiencing life. “Lifelong aphantasia is not a disorder. People's experience may be different from the rest of us but it is not an illness. You can lead a completely normal, fulfilling, productive life without having imagery. If you have a mind's eye and you lose it, that's different and it seems natural in that case to call it a disorder.” Aphantasia may even help, rather than hinder, some people, with a strange correlation existing between a lack of mental imagery and high achievement. Oliver Sacks, the late neurologist, naturalist and author whose bestselling case histories on disorders were adapted for the stage, big screen and fine art exhibitions, had no mind’s eye. Nor does Craig Venter, who pioneered the decoding of the human genome. Famously, Blake Ross, co-creator of the Firefox web browser, had an aphantasia-infused awakening in 2016 and documented it on Facebook. “I just learned something about you and it's blowing my goddamned mind,” he wrote. "This is not a joke…It is as close to an honest to goodness revelation as I will ever live in the flesh. Here it is: You can visualise things in your mind.” Zeman says: “There seems to be a relationship between aphantasia and being involved in mathematical, computational and scientific types of activity. Perhaps this is an interesting way of putting it, but maybe not having your head cluttered by visual images is helpful if you want to think in an abstract way. It's a bit of an open question whether it can help creativity. Certainly, it does seem that not having much visual imagery biases people towards becoming involved in

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abstract mathematical and computational professions. That is an empirical fact from our survey data. We’ve found that people with low imagery are likely to be in those sorts of roles, whereas people with high imagery are more likely to be in what are typically regarded as creative pursuits, such as painting or writing a novel.” At the same time, people considered creative appear to be more prone to being affected by the acquired version of the condition - or at least noticing the limitations it can cause. “It is generally true among those who have lost their mind’s eye, perhaps following stroke, brain injury or meningitis, that they were very visual to start with. Artists and other people who take a particular interest in the visual world and visual experience are clearly going to notice if something changes. For example, a chap came to see me who had gradually lost his mind's eye over two to three years, possibly as part of the start of a neurological degenerative disorder. He was a photographer and spent a lot of time visualising things in his mind’s eye, so he noticed the change.”

Loss of mental imagery does not equate to loss of imagination, however. “It's hard to define imagination, but it involves being able to detach yourself from the here and now and things that aren't present in a more or less creative way. "For most of us, visualisation is an important part of the imagination because most of us think visually to some degree. But there are other ways of thinking, for example you can use language very imaginatively without being able to visualise or you can use your auditory imagination – things in your mind's ear – and imagine movements, such as dancing. "So, visual imagination is important to most of us because vision is pretty important, but it is certainly not the only way to represent things that are not present to us.”

ONLINE:: Find this article online for links to Adam Zeman’s work and useful aphantasia resources at nrtimes.co.uk

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reframing rehab through the arts

Arts therapies are an important, but underused and often misunderstood modality in the assessment, treatment and care of people with brain injuries. Chroma's managing director Daniel Thomas tells NR Times about their growing influence in optimising outcomes in neuro-rehab. The arts therapies and neurologic music therapy (NMT) in particular can work seamlessly towards a rehab programme’s shared functional goals. They also help to overcome the psychological blocks which may prevent a person fully engaging in rehab. A recent Cochrane Review (2017) found that “music interventions using rhythm may be beneficial for improving walking in people with stroke”. It also noted “treatment delivered by a

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trained music therapist might be more effective than treatment delivered by other professionals”. Daniel Thomas, of arts therapies provider Chroma, says: "Working across both the functional and psychological aspects of a person’s rehabilitation towards shared goals is how the arts therapies optimise outcomes. "Enabling the patient to re-frame their relationship with their own rehab also makes arts therapies such an effective

tool within the multi-disciplinary team." Here Daniel answers our questions on the rise of arts therapies and their potential value to neuro-rehab professionals and their clients: What are the arts therapies, are they regulated and who are they for? They are a group of three distinct professions – art psychotherapy, dramatherapy and music therapy. They are regulated by HCPC and are an allied health profession. Current training is based at MA level and includes medical studies, neuroscience, attachment, creating research, psychological models and assessment. Job titles, such as music therapist, are protected in law and there are around 4,000 UK arts therapists. Our organisation provides all three arts therapies across the UK to partners in the education, health and social care sectors. Our therapists work with people of all ages and stages of life, from pre-term babies in

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patient to address some of the psychological barriers to their engagement with rehab, such as anger, hopelessness or depression. Is there any evidence for the arts therapies? There are thousands of published articles, papers, case studies, books and pieces of practice-based evidence to support the efficacy of the arts therapies. There are a handful of RCT based studies too, but it’s often not a very helpful way to judge the effectiveness of the arts therapies. By their very nature, they are a highly personalised form of non-pharmacological medication without side effects which should be facilitated by a trained professional. Over the past few years there have been a number of positive Cochrane Reviews, including the 2017 review looking at ABI. Within NMT, there are hundreds of published papers and research studies – it is the most comprehensively researched and evidence-based form of music therapy.

There are thousands of published articles, papers, case studies, books and practice-based pieces of evidence to support the efficacy of the arts therapies NICU units, to adults and children with brain injuries and other neurological conditions, to families supporting an elderly relative within a palliative care setting. What conditions do they work with? The wide range of conditions treated by the arts therapies includes acquired and traumatic brain injuries (ABI/TBI),

other neurological conditions, autism, mental health, stroke, dementia, learning difficulties, cerebral palsy, attachment and family issues, disordered eating and bereavement. The arts therapies can facilitate the attainment of functional goals, for example gross/fine motor skills within a neuro-rehab setting, while also working with the same

How did NMT emerge as a distinct approach? About 20 years ago, neuroscience researchers started looking at music perception in the brain. They began to see how the brain was impacted and changed by music, for example when we hear music with a strong regular beat. When this happens, our auditory neurons interact with our motor neurons to produce a regular pattern of motor-neural firing, based on the musical pulse. This in turn allows us to tap our toes in time with the music. Researchers started to see there were many more of these “automatic” processes that occur in a brain stimulated by music that could be used within neuro-rehab. Dr Michael Thaut, who developed the NMT model alongside clinicians such as Dr Corene Thaut and Sarah Johnson, realised that by stimulating motor neurons with a regular auditory pulse, gait patterns

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in people with Parkinson’s became more symmetrical (Arias & Cudeiro 2008 / Bukowska et al 2015). It’s easy to see this ‘disco effect’ in action – just notice what happens to your body when you hear music with a regular beat or, when jogging, how you tend to run to the beat or speed of the music. This finding then led to other discoveries and the NMT model, with its 20 approved techniques, was born in the late 1990s. Much of the research (over 200+ published articles) has been published in academic journals and proceedings, and much of it can be found via the NMT Academy website (www.nmtacademy.co). How exactly can NMT optimise outcomes in neuro-rehab? NMT is so effective within neuro-rehab because it utilises many of the automatic and in-built ways that a brain responds to music. Music therapists who have completed the additional neurologic music therapy training, and who are certified and registered with the NMT Academy, work towards shared treatment goals. These cover the sensorimotor, cognitive and speech and language domains. One of Chroma’s NMTs will work closely with the MDT or case manager to understand what the shared treatment goals are, and work towards these. It is by tapping into what neuroscience has told us about music and the brain that we are able to support neuroplasticity and re-wire or reconfigure neural pathways via engagement with music. A simple example would be someone whose language ability has been damaged in an accident or a stroke. Because they now find it impossible to remember the words they need, we can reteach functional everyday phrases through song. The known melody acts as scaffolding, from which the new phrases and words can be hung. The tune from Twinkle Twinkle Little Star helps the client recall the phrase “Can I have a cup of tea” for example.

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If a client already has physiotherapy, why bring in NMT? Using music as a context for physiotherapy can re-engage a client in the process. This may be useful if a client needs remotivating around their rehab. For many clients, it is the way that NMT helps to re-frame their relationship to their own rehab that is so important. We had a recent case where a child was having gait training, but was frustrated and upset with the pain of the exercises and also at the repetitive nature of what the physio was requiring. He was actually only being compliant and engaging for about five minutes a session. One of our NMTs started to work alongside the physiotherapist and toward her goals. The NMT designed a few musical interventions that helped the child to complete the required physio movements, but engaged him in an exciting musical dialogue. He was able to bring playfulness into his physio sessions, and his dad loved seeing his son show some of his playful nature again. In terms of the hard outcomes, the child’s step cadence went from 21 steps/minute to 56 s/m in less than three weeks. We also have adult clients who increase the number of required movements from five per five minutes to 18 per five minutes as a result of including NMT within their rehab programme. Re-contextualising rehab so that the client has a new positive relationship with it is ultimately what NMT allows to happen. What about clients who are stuck and won’t engage with rehab? Can arts therapies work with them? There are all sorts of reasons why clients struggle to engage. Some will be practical, and a big part of NMT is reframing the rehab in a more creative and engaging way. But it is really important not to forget the psychological impact of loss and change, and this is an area the arts therapies work particularly well with. Arts therapists have a background in emotional and mental health and will bring

a real understanding of both the conscious and unconscious processes that can leave a client feeling stuck, demotivated and hopeless. Working creatively to address these feelings can help clients move through these issues. This might be through song writing in music therapy, through the art work created in art therapy or through story or characters in drama therapy. What can really help is the distance provided by creativity. A dramatherapist might enable a client to create a story into which they project their experiences and feelings. But because it is not about them directly, it is a story, they can manage and explore the feelings in a much more manageable way. And through creating a story they can explore other options and possibilities that might feel impossible when thinking directly about themselves and their current situation.

For more info on arts therapies in neuro-rehab settings, contact Daniel Thomas of Chroma via daniel@wearechroma.com or 0330 440 1838. www.wearechroma.com

Learn more about arts therapies and brain injuries

An upcoming conference will give UK brain injury professionals the chance to learn how their clients can benefit from arts therapies. The Arts Therapies and Brain Injury Conference: Optimising Outcomes Across Assessment, Treatment and Care will bring leading arts therapy experts from across the globe to London on 15th March. Tickets for the event, at British Medical Association House, are on sale now. Email Jason@abisolutions.org.uk for details.

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Advanced care planning is vital in setting out a patient’s future wishes and care priorities but is often overlooked or poorly handled. Here Dr Ayema Lwin explains an update to the approach being taken in end-of-life care planning at St Andrew’s in Northampton. End-of-life care should ensure that the supportive and palliative needs of both the patient and their loved ones are met. The National Council of Palliative Care states that these requirements must be identified and met during the last phase of life and into bereavement. Individualised psychological, social, spiritual and practical support should all be offered, as well as management of pain and other symptoms. The mechanism used to establish such patient and family requirements often fails or, in many cases, is non-existent. Every patient on a neurorehabilitation pathway must be given the chance to participate in advanced care planning decisions. Their capacity to make these decisions should be assessed and recorded at the earliest opportunity. Yet in the UK, opportunities to do so are often missed. There is no national system in place to monitor if patients have had the opportunity to express and record their wishes. Even when advance care planning is carried out, plans often lack the details needed to

paint a true picture of an individual’s needs. Encouragingly, the NHS recognises these concerns. A mandatory objective of NHS England is to significantly improve end-of-life care by 2020. This includes increasing the number of people who are able to pass away in the place of their choice, including at home. We hope a new project as part of our transformation programme at St Andrew’s, will help to progress this agenda further. This year we will be implementing a refined version of our advanced care planning tool within our Dementia and Huntington's Integrated Practice Units. This tool would enable patients to fully express their needs and to ensure that healthcare professionals and families know exactly what patients would want at the end of their life. Presumptions and distress suffered by families when such cases culminate in court would be avoided. The document helps healthcare professionals to look after the patient more effectively, with potentially less medication needed in the final days or hours of life.

Key details, such as a piece of music that the patient may find particularly calming, may help to offer the best palliative care possible. We ask questions covering a wide range of factors from spiritual/religious support and the type of room they prefer, to supporting information on wills, power of attorney and funeral planning. It also includes completion of the legally binding advanced decision to refuse treatment forms for consideration of treatments the patient may not wish to receive, such as artificial ventilation, resuscitation, IV fluids and artificial nutrition. The project brings together focus group findings, successful aspects of existing tools and the latest national guidelines. The trial will be audited upon completion and we hope to report our findings in the coming months. Our ambition is to see the tool adopted beyond our own pathways here in Northampton, helping to bring about uniformity which is so urgently needed. At the very least we hope it will influence improvements in other parts of the country and mark some progress in addressing the patchy nature of advanced care planning which currently exists in the UK.

Dr Ayema Lwin is consultant psychiatrist at St Andrew's Hospital in Northampton.

New horizons in end-of-life care NRtimes

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S Nutrition and hydration are the untapped powers of neuro-rehab - and are even dangerously overlooked in many centres - dietitian Sheri Taylor tells NR Times.

erious injury triggers a small army of professionals into action. Each one plays their part as the patient is carried through the fight against death or permanent damage towards rehab and recovery. Yet, despite being primed for this battle, one profession is all too often being left out - to the detriment of the brain and spinally injured. So says Sheri Taylor, a registered dietitian with over 20 years of experience who works with people with serious injuries and neurological conditions. Beyond the acute care given immediately after an injury, and cases where artificial or tube feeding is required, a dearth of input from dietitians exists, she believes. Malnutrition and missed opportunities to maximise recovery are two worrying by-products she is witnessing as a result. “Adequate nutrition and hydration should be fundamental parts of neuro-rehab,” she says. “I find a lot of clients are not even meeting the basic levels required. “There’s a bit of a mixed bag in the UK in terms of dietetic service provision and how quickly nutritional

thought support is implemented. A lot of trusts have very specific criteria that people have to meet before they are allowed to see a dietitian. “You need to be quite severely malnourished or overweight – or have a severe medical issue – before there is any service provision from a dietitian. I don’t see much in the way of intervening before issues arise.” The prevalence of malnutrition in UK brain and spinal cord injury centres is poorly evidenced – perhaps a further sign of neglect in this area; but various studies do point to a festering problem generally among the severely injured. Swedish research shows that 68 per cent of patients with brain injuries who had regained the ability to eat independently, were malnourished within six months of their injury (Krakau, 2007).

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Figures suggest spinal injury patients also face a heightened malnutrition risk. One study found that 44 per cent of spinal cord injury cases were at risk of malnourishment when admitted to a spinal injury centre following acute care (Wong et al. 2012). The research into the UK’s network of spinal injury centres also found that less than a fifth of centres weighed patients at admission. The remainder said they had no specialised weighing scale on site and therefore were unable to weigh patients until they were mobile. Eight out of 11 centres said they used some form of nutritional screening tool. The ratio of dietitians to patients overall, however, was well below that of any other intervening force. There were 4.8 dietitians serving the 482 beds covered in the data. This 1:100 ratio compared to more than 1:1 for nurses, 1:6 for physios and 1:9 for occupational therapists. The speed at which tests for malnutrition can be carried out make high levels of undernourishment in brain and spinal injury centres particularly confounding to Taylor. The standard Malnutrition Universal Screening Tool (MUST) requires only a few pieces of data – the patient’s BMI, how much weight they have lost in the last three to six months and whether any conditions or symptoms have stopped them eating for five or more days. “Those three questions are not even being asked in some centres. Often so much focus is on the high-level factors in the search for answers, such as medication and technology, while some of the basics

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are being overlooked. Surely the basics must be met before we look at more costly interventions? “Perhaps it’s assumed that a client has neural fatigue, for example, but are we sure they are not anaemic or dehydrated? It’s worth at least asking these questions to rule things out.” As a Canadian, Taylor's career was forged in a free healthcare system which places much more importance on disease prevention than in the UK, she says. "A lot of work is done in Canada in ensuring people have adequate levels of calcium and vitamin D, for example, to help maintain their bone mass. This costs a lot less than having to do surgery on someone who breaks their hip further down the line.” Improving nutrition levels at the earliest point benefits both patients and paymasters of public health. In the context of brain injuries, earlier intervention through better food and hydration could be particularly useful in preventing loss of muscle mass. “We know malnutrition increases the risk of infection and the length of hospital stay. Similarly, obesity increases the risk of chronic diseases and the need for specialist equipment. All of which increase the cost of care over time. “From a neuro-rehab perspective, a major traumatic injury usually results in serious levels of inflammation in the body. This kicks your metabolism into a higher gear for a certain amount of time. This increased metabolic rate can actually lead to your muscle mass being broken down quite quickly. This leads to lots of problems down the road, meaning more rehab is ultimately needed to regain that muscle mass. “Also, while the patient may have higher energy needs, if they are sedated or ventilated, they may have a lesser ability to take food orally. “So if we can intervene early on and try to minimise the amount of muscle mass they lose, that would obviously be very cost-effective.” Taylor's work with brain injured clients sees her liaising closely with a wide range of neuro-rehab professions. “I work with doctors to make sure blood tests

are carried out to rule out certain conditions, such as anaemia, which could be affecting the person's energy levels. I also work with them around laxative use, because if we can make certain changes often laxatives are no longer required.” She also eases the journey for neuro-rehab patients from residential to community settings. “I can add, subtract or adjust different nutritional supplements which that person may have been on in a rehab setting, if they perhaps have different needs in the community.” Speech and language is another area of focus. "The client may have issues with their swallow and may require texture-modified diets, such as a pureed or thickened fluids diet. I work closely with the family support team to make sure they have the food that they enjoy, prepared in a way which is suitable given any swallowing issues they may have.” When Taylor first began working with neurorehab clients, she spent a week living on a pureed diet to learn the nuances of making food enjoyable despite a lack of texture. Today she remains on something of a crusade against unappetising mush. “I worked as a locum in the NHS for a few years and repeatedly saw people with swallowing problems being given very limited diets that seem to revolve around mashed potato, yoghurt and supplements. "But it doesn't have to be this limited. People are often stuck for ideas and don't know how to make adjustments. But food is a huge part of someone's quality of life and shouldn’t be restricted unnecessarily." Nutrition's impact on muscle mass and bone density make dietitians highly relevant to physiotherapy too. Specific interventions include helping to alleviate constipation, which may have a detrimental effect on spasticity levels. Issues such as chronic diarrhoea or IBS can also prevent clients accessing therapy that could help them, like hydrotherapy. There is also a psychological element to Taylor’s work. She works with neuropsychologists in cases where agitation levels may be exacerbated by some underlying problem

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Food is a huge part of someone's life and shouldn't be restricted unnecessarily such as abdominal pain or bloating. She also provides input to occupational therapists as they work to get clients preparing food independently. An area which Taylor says requires more involvement of dietitians is in cases where best interest decision-making is relevant. “Support teams are very good at encouraging people to make their own decisions. But if somebody is repeatedly making bad food choices, such as continually asking for fast food, for example, there is often still some reluctance [to allow] a dietitian to step in and help to make best interest decisions where appropriate." More generally, Taylor is focused on challenging perceptions about the link between nutrition and recovery among neuro-rehab professionals. "I go to a lot of neuro-rehab conferences and people often ask me what a dietitian has to do with brain injuries. People are often fascinated when I tell them the many ways a dietitian can help, but they usually admit it had never crossed their mind to

work with someone like me.” Taylor hopes emerging evidence about links between nutrition and recovery will raise the profile of dietitians in neuro-rehab. "There is a lot of research being done on the impact of nutrition on neuro-rehab and recovery, in areas such as inflammation, brain functioning and mood. Hopefully in the next few years we will see more guidance or even set recommendations, like 'every brain injury case needs omega 3' for example. We’re very close, but not quite there yet. Certainly, there is tremendous potential for this.” A breakthrough on this front may come via a seemingly unlikely source - the American forces. "The United States military is investing serious amounts of money into this exact area. They are trying to gain as much information as possible on when we need to intervene and with what dose in order to either prevent problems or to speed up the brain's recovery as much as possible.” One such study by the US Department of

Legal view: Dietary decisions for people who lack capacity, by Sintons’ Kathryn Riddell The Mental Capacity Act 2005 (MCA) provides a legal framework enabling decisions to be taken on behalf of persons who lack capacity. Five key principles underpin the MCA. Firstly, a person is assumed to have capacity to make a decision unless assessed otherwise. Secondly, all practical steps must be taken to enable a person to make their own decisions. Thirdly, incapacity must not be assumed simply because someone makes an unwise decision. Fourthly, all decisions made on behalf of a person who lacks capacity must be taken in their ‘best interests’. Finally, when a ‘best interests’ decision is taken, regard must be given to whether the purpose can be achieved in a less restrictive way. Where there is concern that a patient is making bad dietary choices, potentially detrimental to their health, the first question to ask is whether

Defense is an investigation into links between omega-3 fatty acids, mainly found in fish oil, and suicide prevention. A more famous example came 13 years ago when its research arm, the Defense Advanced Research Projects Agency (DARPA) called on the science community to create the optimum food for soldiers in battle. Biochemists responded with the invention of a substance which generates energy from ketones - molecules formed by the breakdown of fat – instead of carbs fat or protein. The product is far from being widely used by members of the public, but is currently being hyped as an entirely new category of fuel for humans. Long before the next generation of scientifically pimped super foods fill supermarket shelves, however, Taylor has a much simpler vision; for everyone in rehab to receive basic levels of nutrition and hydration. "Adequate nutrition and hydration affects every single part of how your body and brain function. It affects energy levels, muscle mass, bone density, skin integrity, and should be a cornerstone of rehabilitation. It is absolutely fundamental to it,” she says. they have capacity to make those choices. The test for capacity is set out in the MCA. Remember, incapacity cannot be assumed just because a person makes unwise dietary choices. If the patient does lack capacity to make healthy dietary decisions, then those caring for him/ her are empowered by the MCA to make dietary decisions in their ‘best interests’. The MCA stresses the importance of ascertaining the wishes of the incapacitated person and consulting with other interested parties - including relevant health professionals. Ultimately, an assessment of ‘best interests’ involves a careful weighing up of ‘pros and cons’ in order to reach a decision which achieves its purpose while simultaneously causing the least infringement of the rights and freedoms of the person who lacks capacity. Helpful guidance can be found in the MCA Code of Practice (available online by searching on the gov.uk website). Kathyrn Riddell is a partner and medico-legal specialist at law firm Sintons, based in Newcastle upon Tyne.

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aiming high harnessing the full power of rehab goals

Client-centred goals can be a powerful tool in rehab, sharpening focus and making treatment more relevant to the individual. Here Dr Peter Tucker, consultant clinical psychologist at neuropsychological rehab provider Recolo, explains how to tap into their full potential and avoid common goal-setting mistakes If handled well, goals can narrow the gap between what the client wants and what can be delivered. They serve as a vehicle to draw together the aims of a client and those of the therapists and treating teams – which may be entirely different - and frame rehab in a real-world context. All too often, however, goals are underutilised in rehab - or miss the mark for various reasons; including overly complex aims, a lack of clarity, failure to feedback on progress and a mismatch between the client's priorities and the goals set for them. Here’s how to maximise the impact of rehabilitation on the lives of your clients –

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through the mechanism of a client-centred goals systems: Mind the gap Often there is a gap between what the client wants to achieve and what therapists are working towards. For example, you may have someone with a demanding career, such as an accountant, who just wants to get back to work. All of this other stuff they are being presented with by therapists is just an inconvenience. So, although improving mobility or expressive language may be obvious steps towards greater independence, clients may not be motivated by working on them in therapy. The idea

of getting back to work does inspire them, but they may not appreciate the immediate first steps. Careful negotiation of goals is required to close this gap. This means pausing various treatments and therapies, sitting down with the client and asking what they want out of life. Then objectives can be built for them, which the therapy team can break down into goals that enable a step-by-step approach. In addition, a client lacking insight into their condition might present an obstacle to getting a realistic goal. In a sense, poor insight may increase the gap. Goals figure in the solution to this problem. The collaborative setting of goals and reviewing of progress towards them, provides a forum to resolve discrepancies between the client and therapist’s different positions. Watch your words Having a consistent way of referring to goals throughout your team is essential. Make a clear distinction between goals and plans. What some rehab professionals call goals are actually plans; and therefore, don’t present a clear idea of what the client is

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aiming to achieve. For example, "to get a good assessment of the person’s cognitive ability" is not a goal. It is in fact part of a plan towards helping a client build a clear picture of their thinking skills. This might seem pedantic, but carefully chosen language helps us to manage expectations. We cannot expect a client to be motivated to engage in an assessment. A therapeutic goal, on the other hand, should be meaningful to the client. It is also important to differentiate between shortterm SMART goals (Specific, Measurable, Achievable, Realistic and Time-Limited) and long-term objectives. For a young person, the former could be “to walk unaided for 50m”, compared to the latter e.g. “I want to be a footballer”. The point here is to ensure as a team we are speaking a common language, again to manage expectations. So, we might expect the young person to be less motivated with a SMART goal, but when the link is drawn to the longer-term objective, this will optimise relevance to them. Setting goals in concrete Goals become more complicated when they move into the psychological world and tend to be less objective; although it is possible to have a subjective goal. Equally it is possible to construct an objective goal out of something that seems at first sight to be a subjective state. A typical goal with a parent of young clients could be “parents and therapist to come to a shared view about the reason my child is behaving like that”. This could be made more tangible through discussion and sharing specific examples about behaviour. Good visibility Long-term goals should continually be kept within sight or hearing of the client. During the day-to-day grind of therapy, and the more difficult moments of the rehab journey, clients should be reminded about where these activities are leading. When things get tough, contextualising whatever they are doing in the framework of their wider objectives, and explaining

the connection between smaller and bigger goals, is highly important. By keeping tabs on the activities, short-term goals and the bigger objective, the meaning of all the hard work being done is clear. Whose goal is it anyway? Ideally clients work towards their own goals, rather than those placed on their shoulders by others – such as loved ones or healthcare professionals. In the flurry of activity that surrounds busy and highly motivated therapy teams, however, ownership of the goal can be lost. When goals are analysed, and clients questioned, it often emerges that goals were actually those of the therapists and not the client. This isn't necessarily a bad thing, but we must be clear up front about whose goal we are working towards. This enables us to manage our expectations about the feasibility of goal attainment. Relationships matter Good working relationships between the client and those involved in implementing goals and plans can influence goal outcomes. Maintaining a strong rapport makes motivating the client easier. Even though a therapist may feel pressure to get on with rehab by setting a goal early on, the time may not be right to do that yet. Time building rapport is well spent. Why reviews rule A symptom of the UK’s politically driven healthcare system is a widespread ‘goalplan-do’ approach, with no ‘review’. The value of review processes is often neglected. This manifests itself in rehab when goals are set without also having a goal review date in place. Setting a goal is largely pointless without reviewing it to learn key insights and to establish whether the rehab plan has worked or needs to be adjusted. Goal review systems are difficult to implement, especially in a community setting, and require skills, resources and ongoing learning. The most sensitive measure of change in neuro-rehab is known as Goal Attainment Scaling (GAS),

which was introduced in the 1960s in mental health treatment and has since been adapted for rehabilitation settings. Its advantages include the involvement of patients and families in the goal-setting process, which is shown to improve results. A GAS system encourages communication and collaboration among team members, stipulating that they meet regularly to discuss goal setting and review. Because in GAS each goal is scaled, the measure is more sensitive to change in that it can capture ‘partially-’ or even ‘over-’ achieved goals. Because of the clientcentred nature of the goal setting, GAS is more able than standardised outcome measures to show change in areas that are relevant to the client. One of the reasons people find goals aversive to set is the worry: "What if I don’t achieve them?" Therefore, care should be taken when setting and reviewing goals and plans to have a culture of learning. Goal review should not adopt a critical standpoint, allocating blame to nonattainment. Instead goals and plans should be reviewed within a learning culture: "That’s OK, what can we learn from this?" or "we set the bar a bit high there". Flexible approach Even over a short period of time, the client’s circumstances can change and goals can therefore become less relevant to them. When this happens, it is advisable to write up what ground has been covered in working towards the goal, capturing any achievements along the way. New material can then be incorporated in the next goal cycle.

Dr Peter Tucker is part of the senior clinical team at Recolo (www.recolo.co.uk), which provides neuropsychological rehab to children, young people and their families.Contact him on peter.tucker@recolo.co.uk or business manager Lois Shafik-Hooper, on Lois. ShafikHooper@recolo.co.uk / 07715 104802 for more info.

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a new spin on rehab The severely injured are increasingly challenging their disabilities through pedal power. Andrew Mernin heads to the Devon countryside to join the rehab cycling revolution.

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illiam Pales was a true adventurer who, as an accomplished sailor, crossed the Atlantic Ocean several times. Then came a massive stroke just after retirement, which locked him out of his beloved great outdoors and into a world of daytime TV. The timing of his stroke was all the crueller given that he had recently bought a cottage on the edge of Dartmoor, ready to be restored. The wild, epic landscape outside was so close, yet, due to several physical challenges, so very far away. His son Tom wasn't prepared to see his old man live out the rest of his days in his living room. His intervention broke him out of his sofa sanctuary – and spawned an emerging type of therapy which is increasingly being used by clients undergoing neuro-rehab. Tom, whose father passed away last year,

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says: “He had a lot of frontal lobe damage and was a different man after the stroke, with a lot of challenging behaviour. He’d also lost his balance and complete use of his left side - and had agoraphobia and a terrible fear of falling.” The stroke was in 2002, when Tom was 25. Initially, he began taking his father on a weekly trip to the Granite Way, part of the Route 27 cycle journey linking Devon’s south and north coasts. They took a short walk on the tarmacked path, leaving a marked rock at their furthest point every weekend. Over the months the rock travelled 150 metres, but no further. “Then one day a man cruised past with a wide smile on what looked like a sofa with pedals. We had seen our first recumbent trike. “Dad was very cold on the idea but I just thought it looked like an incredible remedy to the situation. Dad had done his own maths and worked out that he was pretty much

checkmated, but I was really keen to persevere.” They bought a recumbent trike and, within the week, flew past the 150m rock, towards a life of increased freedom for William. “That was the start of rehab cycling, and I began to work with others. If I could handle my dad, I could pretty much handle anyone. He was a big chap and had some pretty challenging behavioural problems." Having abandoned his career in property management, gained a degree in health and social work - and worked as a community support worker with people with brain injuries – Tom finally launched Freetrike in 2010. The service runs one-to-one sessions on specially adapted recumbent trikes for people with disabilities in Devon. It transports housebound clients to their nearest shared path for two hours of exercise. Tom’s work spans Devon’s National Cycle Network, which gives access to the

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countryside in and around Dartmoor. Stately home driveways and horse racing service tracks are also occasionally used. Freetrike has covered almost 9,000 miles since 2010, working with people of every type of disability, including those related to stroke, brain injury and neurological conditions. “My first paying client was a beef farmer who had suffered a stroke and developed a terrible fear of falling. Recumbent trikes are very stable and in control and, therefore, remove this fear. "Next I worked with a young chap who was involved in a motorbike accident. You could see his multidisciplinary team was struggling with his challenging behaviour so they brought me in and I whisked him off to the Tarka Trail; 46 miles of tarmac in North Devon on a disused railway. I got him out exercising and eventually supplied him with his own trike. For him a lot of it was about anger management, while it also helped him to concentrate. He was later able to go to college.” Recumbent trikes are lightweight, can collapse down and easily be placed in the boot of a car. Some clients may progress from a recumbent to an upright trike then on to a 2-wheel bicycle and develop the confidence to go it alone. Freetrike works with specialist manufacturers to fine-tune trikes to specific types and levels of disability. These are sold or used during sessions. Powered by the mantra, “adventure-bound not housebound”, Tom aims to give clients the freedom to challenge their disability while reconnecting with the outdoors. "It's like being in a deck chair, with pedals in front of you. The steering column is almost at your hips, and can be steered from one side if required. There is also a single brake lever on one side, which, when squeezed, is perfectly distributed across both sides.” Other modifications include specialist pedals designed for people paralysed on one side, which keep the paralysed leg in a stable position. For particularly weak clients, more pedal power can be generated through clever bike gadgetry. Some models have brake levers which can be operated by the

Road trip: Tom (right) with one of his regular clients who previously suffered a stroke.

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knee for riders unable to grip a brake lever. Motorised recumbent trikes are also available. “We offer a root and branch level of adaptation. We've sourced the best equipment, and I believe the recipe is spectacular and won't let people down. It's really a lovely thing when you see a client go off into the sunset with their equipment and it keeps working for them, and you don't hear from them again." Another key feature of a recumbent trike is its appearance - not as a piece of disability equipment, but a “cool piece of kit”. "It moves people out of the sick role. They are out doing something clearly recreational on equipment that is made for performance, not disability. It gives them back their identity. The trike hasn't got any hint of a specialneeds piece of equipment about it. This is such a powerful ingredient of the medicine. "When we meet a member of the public, the encounter is never about the disability, it’s about the bike or the location." Often, talk also turns to Sophie, Tom’s Labrador who regularly comes along for the ride. “For people with traumatic brain injuries, or limb loss, they are going through a grieving process. Sophie brings them out of it, and has a magical effect on them. She runs alongside us, jumps in and out of the water and draws members of the public in to talk to us. For some people, the sessions are very much about the social element, for others it’s more about seeing nature and the changing seasons. “With a lot of clients, it's the cup of tea and a biscuit at the end of the ride that they really look forward to." Although no significant body of clinical evidence specifically linking recumbent trike riding with reduced depression exists, cycling in general is known to alleviate stress and anxiety. It has even been shown to alter the structure of the brain, according to reports. A neuroscientist at the Cleveland Clinic Lerner Research Institute in Ohio rode a tandem bicycle across the state in 2003 with a friend with Parkinson's. Surprisingly, the Parkinson’s patient showed significant improvements. A subsequent study of 26 Parkinson's patients

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using stationary exercise bikes provided further evidence. All patients improved and "tandem" patients – who were encouraged to keep up with a faster partner - showed significant increases in connectivity between parts of the brain responsible for motor ability. While keen to get involved in any future studies about the impact of recumbent trikes, Tom has plenty of anecdotal evidence of the healing power of three-wheeling. “It helps clients manage their depression and also their anger. We find a lot of clients come off antidepressant medication by getting fitter and meeting people through the service.” In terms of physical benefits, recumbent trikes are an attractive prospect to physiotherapists, whose clients require repetition of movement which is often hard to recreate in a clinic. "If you have a client doing 15 miles a week over 52 weeks that is an awful lot of pedalling. We are very careful not to go down the route of saying this is a cure, but I do use the phrase ‘rehab cycling’ and am very happy to do so because it definitely moves people closer to where they were before their injury or illness.” Transfers in and out of the trike are an important part of the process. "Moving from a wheelchair to the van, the van to the trike and then in out of the trike when they need to spend a penny, means there are a lot of good transfers and they have

ownership over those. To me the transfers are one of the most valuable things about the experience. If we did a qualitative study on this, I'm sure carers would say they find their clients easier to assist after a run of recumbent trike sessions. Obviously, cycling is also getting all the organs working, the legs going and the whole body stimulated." With over 150 miles of shared paths on converted disused railways, or flanking rivers and canals, Devon is an ideal location for Freetrike. But Tom aims to spread rehab cycling further afield. This year he plans to recruit five fellow rehab cycling instructors, partly to allow him to spend more time exploring opportunities to spread the service beyond Devon. The main reason, though, is to enable groups of disabled riders to venture out into the countryside together. Recumbent trikes can be connected together like Lego, meaning large groups could theoretically be carefully guided through busier areas or trickier terrain, before being separated out. The cost of a recumbent trike varies from around £800 for a second hand “entry level” model to £6,500 for a brand-new, motorised version. “It's not cheap to buy the equipment if you want to go it alone, but it's an incredible investment in comparison to the cost of modifying a house. Compared to the cost of adding wet rooms, stair lifts and ramps it is a drop in the ocean. The change really can be spectacular. I've seen people who are actually fitter now than they were before they had their stroke. “For a lot of young people with head injuries, the bike has become something positive to focus on, instead of food, alcohol or the opposite sex, which can be problematic after brain injuries." Tom has around 35 clients on his books at any one time, but this year's expansion should significantly increase this figure. He admits his role is far from easy, given the exertion of transfers and excessive driving hours. He wouldn't swap it for all the gold in Bradley Wiggins’ trophy cabinet however. “I love the locations and the people - and I must have the most spectacular office in the world."

Enabling people to reach their full potential.

legal

fighting back against rehab denial Denial of rehabilitation can be a major setback for the seriously injured, leaving them and their loved ones facing an uncertain future. Such decisions needn’t be the end of the line in the search for funding and support, however, writes Yogi Amin, partner at Irwin Mitchell. The public funding and commissioning of rehabilitation services on an individual basis varies hugely across the country. In areas where public authorities are very receptive to such requests, we see efficient and effective provision of specialised services, often built around good collaboration between various bodies and tailored to an individual’s need. Yet in other parts of the country, patients and their loved ones face a much greater challenge in accessing the services they require. A UK-wide postcode lottery means public funding and services may be unfairly - and unlawfully – denied to patients. In my experience, it is only when you challenge authorities about a lack of funding, service provision or coordination among relevant organisations, that they sit up and take notice. Holding them to account to meet their statutory duties not only helps the individual patient access the services that might give them greater independence, it can also set an example to help other cases where rehabilitation has been denied. There are several strands through which

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rehabilitation services are arranged, funded and provided. Continuing healthcare (CHC) packages for rehabilitation are free at the point of need but, amid tight NHS budgets, are in very short supply. Rehabilitation can also be accessed via an individual funding request (IFR) to a Clinical Commissioning Group (CCG), with services delivered by the CCG or a specialist provider and arranged through NHS England. Alternatively a patient can ask for a personal health budget (PHB) and arrange the service themselves. Patients may also find themselves under the care of local authorities - although their provision is limited to social care and housing provision and adaptations, rather than rehabilitation. NHS commissioning is underpinned by a clear framework which allows for the assessment and funding of rehabilitation. Worryingly, I have come across

commissioners who are unaware of its very existence. Instead of following guidelines, knee-jerk decisions can be made to refer patients to non-specialist services or local authorities. The clear danger there being that the patient’s particular healthcare assessment and rehabilitation needs are not met. The statutory framework guidance for the provision of NHS care states that assessments must consider the potential for rehabilitation to lead to increased independence. If this is disregarded, the public body’s decision is challengeable, perhaps by writing to the CCG with the help of a lawyer, approaching the health ombudsman or, as a last resort, a judicial review. In some circumstances an injunction can be obtained from the court to order urgent provision of services pending the outcome of the legal case. Under the framework, commissioning

It is only when you challenge authorities about a lack of funding that they sit up and take notice

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organisations must ensure arrangements satisfy appropriate rehabilitation and care needs of people with acquired brain injury (ABI). It also quite clearly sets out that the longer term needs of people with ABI shouldn't be separated out. In other words, there should be cooperation between the NHS and local authorities involved in the individual’s care. The two public bodies must work together and may be required to provide a joint package of care, with one body taking the lead in commissioning. Under section 67 of the Care Act 2014, an individual is entitled to support through the assessment process itself. If family members are unavailable or unable to advocate for the individual, a Care Act advocate who can independently support and represent the individual can be requested from a local authority and is funded by them. Once an assessment determines the individual’s eligible needs, a care and support plan is produced aimed at delivering person-centred care . Sometimes challenges are required when a patient is pushed from one authority to another, in the event of service cutbacks. A recent case involved the closure of a rehabilitation and respite service for 16 to 18-year-olds. The case went through various processes with NHS England, who ultimately reminded the local CCG that it had been given funding a year earlier to deliver that service. The CCG had the budget and hadn't delivered it. Plans to get the service back up and running within six months were put in place, highlighting the power of a legal challenge to a lack of commissioned services. When challenged about rehabilitation denial cases, CCG's may come up with the excuse that they only fund X amount per week for a specific service provision. From a legal perspective, this sounds like a blanket policy, so is likely to be unlawful and can be challenged. The law requires discretion in each area; the

CCGs can't simply dictate that services must be provided in a residential setting individual circumstances of each case must be factored into any decision. Furthermore, CCGs can't simply dictate that services must be provided in a residential setting. They must consider home care packages, if that environment would enhance rehabilitation for the individual. Raising IFRs with CCGs can be a long, convoluted and expensive process. The request is put to a panel that has a finance budget and looks at exceptionality. It usually assesses IFRs linked to a wide range of conditions one after the other. Proving a patient has an exceptional and urgent need for rehabilitation against the context of many other serious cases, is therefore very difficult. One cannot always compare cases of patients with different conditions. I advise taking cases to a separate complaints process before going down this cumbersome and frustrating route. Challenging decisions through a judicial review, meanwhile, is akin to using a sledgehammer to crack a nut, and there are other options available. They include a complaint to the health ombudsman, which can deliver a good response albeit often after a lengthy investigation period. In a recent case, approaching the ombudsman resulted in a council paying £5,000 in compensation to a patient. The authority’s dithering on an assessment was deemed to have been seriously detrimental and distressing to the individual. Delays in assessment and provision of services can often result in a setback to rehabilitation, and experts can often demonstrate the detriment to the individual. If a judicial review is the only option, a legal case must be brought within three months of the date of the decision or the introduction of the policy that will restrict

or reduce services. The challenge can be based around the individual’s human rights, but is generally on the grounds of an irrational decision by the body which ignored relevant information or failed to go through the right processes. Many cases come to us beyond the three months and we are unable to challenge them, unless a new decision can be instigated. I also regularly have to remind patients' families that legal aid may be applicable, despite a common misconception that this type of funding support is no longer available. A specialist public law solicitor can assess whether a patient is eligible for legal aid. Whichever route cases are taken down, the process may seem daunting. Certainly, the landscape for rehabilitation services gets more and more complex as the NHS statutory framework develops. With every judicial review I am involved in, an NHS body has introduced another area of research, another piece of statutory legislation is brought in or another stream of services emerges which has to be considered as a possible alternative for the patient. There is a fast pace of change in evidence and the legal framework. Encouragingly, this continual process of change means different sources of funding and support can arise. I urge everyone involved in rehabilitation to look again at the options available to health authorities in their area and to challenge refusals to assess or provide services – there may well be a rehabilitation service or previously unexplored solution that could put a patient back on track towards independence. Yogi Amin is partner and national head of public law and human rights at Irwin Mitchell.

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interview

brain injury lobby finds its voice 40

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Recent developments at Westminster could put acquired brain injuries higher up the political agenda and garner more support for neuro-rehab, MP Chris Bryant tells Andrew Mernin. “It’s the economy, stupid,” read a note permanently displayed on Bill Clinton’s desk as he plotted his 1992 rise to power. The sentiment was written by campaign manager James Carville to sum up the votewinning force of money. It remains an enduring electoral truth that continues to drive political decisions today. If, as in the US, economic matters are the motivator for UK politicians, the launch of the All-Party Parliamentary Group (APPG) for Acquired Brain Injury may have piqued their interest. Delegates at Westminster, including a smattering of MPs and peers, were told that acquired brain injuries cost the UK around £15bn every year. That’s the equivalent of 0.75 per cent of

Britain’s GDP – or the same cost as Europe’s biggest infrastructure project, the vast Crossrail network currently being built in London and the South East. Put another way, it could pay to host the London 2012 Olympics almost twice over, or to build 14 Wembley Stadiums at today’s prices. Reminding MPs and healthcare policymakers of the financial implications of brain injuries may be an important part of the work of the APPG going forward; especially with every other faction of healthcare fighting to be heard amid sweeping changes to the NHS. Chris Bryant, Labour MP for Rhondda and chair of the APPG, tells NR Times: “The point of the APPG is that there is no party politics in it. It's about trying to find solutions and also raising awareness, which is especially key for us at the moment. Lots of people don't understand how much can be achieved with good rehabilitation services. Also, rehab units are often nowhere near trauma units and the pathways from the injury to the support are not very clear, with lots of people falling between the cracks. “There is a very strong argument for rehab for acquired brain injuries. It is massively costeffective, actually saving money for the NHS and wider public purse; but lots of people are simply unaware of how much difference it can make. It can get someone all the way back to full cognitive normality and able to go back into work, rather than relying on the benefits system, for example.” Bryant is joined in the APPG by Conservative MP John Hayes, Baroness Tanni GreyThompson, brain injury charities, networks and associations, private sector representatives and brain injury survivors. Its launch will be followed by four roundtable meetings to discuss vital issues. They include ABI causes, trauma and neuro-rehab service provision, crime and offending behaviour, education and concussion in sport. “Each discussion will be followed up with a report featuring key recommendations. A lot of us feel that these issues have slipped down the list of priorities in recent years,” Bryant says. Given that the last brain injury APPG disappeared without trace 14 years ago,

will this new entity really make a tangible difference to current policy and problems? Recent years have seen no notable increase in the NHS’s stock of approximately 1,000 neuro-rehab beds - or in the estimated £220m of annual NHS spending on neuro-rehab. Brain injury professionals may, therefore, be understandably sceptical about the prospect of getting brain injuries higher up the government's agenda. Bryant insists the new APPG is a significant step forward. “Everyone involved is wholly committed to driving change,” he says. “There are also members of the House of Lords who are very interested, some of whom have their own personal reasons, whether that is the loss of a family member or friends who have been affected." Bryant’s own interest in ABI stems from previous involvement in lobbying rugby authorities to get to grips with the threat of concussion. Despite recent announcements about increased focus by football authorities on concussion, he says: “The understanding of concussion in sport is still pretty limited and there’s a lot more work to be done there. There is probably a massive hidden cost of concussion that has led to depression and anxiety among people who might not have realised it had anything to do with the concussion they had years earlier.” With concussion and many other ABI issues to face up to – like disproportionate amounts of prison and homeless populations with brain injuries – the APPG faces a mammoth task in the months ahead. Small progress has been achieved already, however. Bryant raised the issue of brain injuries in Parliament before the APPG launch and has secured a meeting with the disabilities minister this quarter. “The government was very keen to meet quickly so there is definitely a commitment to engage, whether or not that will lead us anywhere. I would argue that the NHS is under-resourced in general but I don’t know whether they will address that.” Time will tell. Should any breakthroughs be achieved or reports published by the APPG, you can find out about them online at nrtimes.co.uk.

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notes from westminster Delegates were given an overview of the issues affecting neuro-rehab at the launch of the new brain injury APPG in Westminster recently. Professor Diane Playford, president of the British Society of Rehabilitation Medicine, delivered an overview of ABI and the multiple and varied effects it has on each individual. Brain injury is the leading cause of death and disability worldwide and, in the UK, almost 1.5 million people attend A&E with head injuries each year. Of these, around 200,000 are admitted to hospital. Many thousands more suffer from strokes or brain injuries caused by infection and disease, delegates were told.

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Playford explained how specialist rehabilitation services are a critical component of the acute care pathway. Rehabilitation reduces the burden on acute and frontline services if patients are immediately accepted after their medical and surgical needs are met, she said. A substantial body of evidence shows that specialised rehabilitation is effective, and is offset by savings in the cost of community care, making this a highly cost-efficient intervention. But current rehabilitation needs are not

being met, she said, with the Major Trauma Plan (2010) not taking rehabilitation into consideration. Bed provision is insufficient and services are neither streamlined nor easily accessible. Furthermore, the rehabilitation prescription is largely not implemented and does not follow each patient along the care pathway as it should. Awareness is very low in primary care so people with acquired brain injury who are discharged into the community receive very little support, she said. Playford highlighted the role of education in raising awareness of ABI. It warrants a category of its own due to the size of the problem, and should not simply be under the umbrella of "long-term conditions," she warned. Increased awareness of the magnitude of the problem should encourage

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The dramatic long-term impact of rehab needs to be emphasised extra funding for rehabilitation in this area, delegates heard. Meanwhile, colonel John Etherington (pictured right) gave a detailed explanation of how rehabilitation can be a net contributor to the NHS and society. The director of defence rehabilitation, consultant in rheumatology and rehabilitation medicine at the Defence Medical Rehabilitation Centre, Headley Court, said: “In the short-term, rehabilitation is costly, but it is far less expensive than poor clinical outcomes. Ongoing costs fall on the health services, individuals and carers, and society as a whole. “The continuous requirement on health services due to a lack of proper treatment places an avoidable and continuous cost burden. Disability due to poor care might prevent an individual returning to work, and more individuals requiring disability benefits places a greater cost burden on the taxpayer. The total cost of traumatic brain injury has been estimated at £15bn, and figures are set to increase if changes are not made.” He continued: “The dramatic longterm benefits of improved, immediate rehabilitation need to be emphasised in order to change the current narrative that ‘rehabilitation doesn’t work,’ or that ‘it is nice, but we cannot afford it'. “Studies on war veterans who receive intensive, good quality rehabilitation following traumatic brain injury showed that the majority were able to live independently [87 per cent] and return to work [92 per cent]. This could also be true for society at large. “Delayed transfer of care is currently a big concern, and ‘referral to treatment’ times are on the rise. Furthermore, five per cent of cases treated in Major Trauma Centres subsequently receive specialist rehabilitation. This means that patients

with brain injuries are not receiving rehabilitation as quickly as they should, and the aforementioned negative consequences are only becoming a bigger economic problem." Etherington also reinforced the lack of rehabilitation beds available in the UK. There are 994 specialist rehabilitation beds in England. Initiatives such as the Injury Cost Recovery Scheme, where insurers provide compensation for rehabilitation, are largely underused. Awareness needs to be raised of these alternative funding streams, he said. “Ultimately, a new dialogue must begin

incorporating a cross-governmental / society initiative and joint funding. The NHS needs to embrace broader societal outcomes; work, wellness, injury and illness prevention. Improving outcomes will generate national financial savings. “Better resourced and planned rehabilitation will result in reduced welfare costs, reduced demand on the criminal justice and education systems, improved life expectancy, work and recovery.” Also speaking at the APPG meeting was Professor David Menon who focused on the extensive global TBI report recently published in The Lancet. See page 6 for more on that report.

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robots rise to data challenge Neuro-rehab’s struggles to use patient and research data effectively could be solved by artificial intelligence (AI), as NR Times discovers. Since a computer defeated world champion Garry Kasparov in 1997, chess has been a continual marker of AI’s progress. In December, the world marvelled at the latest machine-driven victory on the chequered board, which underlined just how far the technology has come in the last 20 years. AlphaZero - Google Deep Mind’s gaming AI – taught itself how to play chess in under four hours with no human intervention. Within a day it had become a master of the game. Alpha was able to process 80,000 positions per second taking what Deep Mind called a “humanlike” learning approach, if at unfathomable speed. AI’s ability to rapidly process, learn from and objectively interpret vast amounts of data presents amazing possibilities far beyond the battle for pawns, knights and queens. Neuro-rehab’s chessboard could be the towering piles of printed data which shape the future of patients in personal injury and negligence cases. For each carefully planned move in pursuit of the king, read the many potential rehab interventions and outcomes informed by research and past experience.

“The use of AI in this field is inevitable. It is a question of when, not if,” says Edmund Bonikowski, whose expertise straddles neuro-rehab and AI. The honorary consultant in neurorehab at Taunton and Somerset NHS Foundation Trust also produces medico-legal reports on people with brain and spinal injuries via the National Neurological Rehabilitation Chambers. Currently, he is also investigating ways of applying AI to neuro-rehab data in medico-legal reporting, as part of a PhD programme at Cambridge University’s Information Engineering department. "Medico-legal reports in neuro-rehab require the expert to assimilate a very wide range of inputs from a substantial body of medical records, some of which will be handwritten, with some structured and some unstructured. There are often other expert reports to factor in, as well as witness statements from families, friends and employers. The expert must consider all of this information, reference it against their own experience and say, 'this is what I think'. “For a serious personal injury or negligence case it is not uncommon to be sent a pile of paperwork that would stand two or three feet tall. On some

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cases I have received nine or 10 boxes of notes, or thousands of pages on an electronic file, which can be nauseating to scroll through on screen." While his specific focus is on revolutionising medico-legal reporting, Bonikowski believes AI could also solve neuro-rehab's wider problematic relationship with data. "Data in neuro-rehab is very poor and difficult to source. It is extremely hard to identify numbers of people with particular levels of disability resulting from traumatic brain injury, for example. Incidence and prevalence levels related to hospital admissions are available, but it is much more difficult to get at the numbers of people with mild brain injuries who may not go to hospital, or whose injury wasn’t identified by healthcare professionals. “Superimposed on top of that is the fact that neuro-rehab is generally poorly funded compared to other healthcare specialities. With limited resources in terms of clinical and support staff, the processing of data comes fairly low down the priority list." The acceleration of AI could help neurorehab professionals face up to such issues. And, thanks to easy-to-access networks – which are increasingly cheap, while offering higher speed and capacity – this is theoretically possible now. “We could easily use document analysis techniques to scan through huge volumes of data and extract meaningful and related content. "If we were giving an estimate of the risk of epilepsy occurring in a particular case, for example, it needn't just be

based on your own experience or one or two papers. It could be based on how many cases have been put through an algorithm and what the experience was. What were the outcomes? The data doesn't necessarily all have to come from the personal injury or negligence world. It could come from other patients in the general population of brain injury sufferers. This whole process could be powered by AI.” Whether or not AI is the definitive answer to data problems in neurorehab, a new and improved approach is certainly needed, says Bonikowski. "We lack really good objective markers as so much of this field is subjective. Unlike haematology, for example, in which blood counts can be measured and plotted, we just don't have enough of this type of information. “Also, the field we are working in is so multidisciplinary and multifaceted. Brain injury covers physical impairment and disability, as well as cognitive and behavioural problems. An injury impacts so many areas. Representing this complex situation within poorly resourced services is virtually impossible.” Medico-legal experts must swim through oceans of complex data in search of relevant and valuable insights. Ultimately they are charged with delivering professionally correct advice, while giving the court three vital elements: brevity, clarity and reasoning. The challenge is intensified by an ongoing influx of additional data which must be factored into each case. "New information comes into

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the process, perhaps related to the deterioration of the client, the impact of new interventions or perspectives previously unseen. "The expert must incorporate these into their evolving viewpoint. "Views must also be based on research evidence. Because medical science is very fast-moving, it's not always easy to keep up with the very latest developments. "Furthermore, research evidence is often viewed differently from one expert to the next, causing further difficulties." The adversarial nature of personal injury and negligence cases can also cloud the process. "Our opinion is for a lay judge to assimilate a complicated medical process. The difficulty for the judge is when they see two opinions and have no way of knowing which one is right. "Through AI, there is an objectification of the opinion – views become much more objective than subjective. This is a fundamental principle of AI; to be able to arbitrate between views and say, with a degree of certainty, what’s right and what’s wrong." AI also has the potential to challenge the lack of consistency which inevitably arises in tasks carried out exclusively by humans, says Bonikowski. “AI is simply a way of incorporating human experience into mathematical machines or algorithms." An algorithm is a process or set of rules to be followed in calculations or other problem-solving operations. The more information processed by an algorithm, or system driven by algorithms, the more reliable its results. "If thousands of brain injury cases were put through an algorithm, then the certainty of the outcome, and consistency, increases. “In contrast, a human expert may recollect their experiences differently

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tomorrow from how they did today, if their mind is distracted.” Crucially AI is able to analyse data spanning a far greater number of dimensions than is humanly possible. While humans may be able to comprehend data on three or four dimensions, AI can make sense of it on thousands, within seconds. It is therefore possible to find correlations between seemingly unrelated factors which may be relevant to the patient’s case. Despite such possibilities, neurorehab has been slow to take advantage of AI, especially compared to more commercially minded fields. The modern concept of AI dates back to Alan Turing's days at Bletchley Park. Its acceleration in recent years is the result of a perfect storm of factors. Computing capacity that can perform billions of iterations in the blink of an eye, the emergence of quality data on a massive scale and surging levels of investment are all contributing to its rapid development. Research, administration and dataheavy tasks like due diligence are among a range of legal sector duties being influenced by AI. In life sciences, Google is pioneering AI on several fronts. It recently launched Deep Variant, an open source tool which uses AI to draw a picture of a person's genetic blueprint. In 2016, it teamed up with Moorfields Eye Hospital to test whether “machine learning” technology applied to eye scan data can speed detection and treatment of eye diseases. Machine learning is also being used extensively in the insurance industry to enable operators to better understand risk, claims and customer experience. In financial services, fintech products and so-called 'robo-advice' services are increasingly fuelled by AI. The UK government is also on board the AI bandwagon.

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Last year it announced plans to build a new data ethics and innovation centre aimed at ensuring ethical innovations in AI and data-based technologies. The government is also spending £75m on progressing recommendations made in a recent independent review on AI. Professions already embracing AI initially did so tentatively, as trust in the technology built up. This will be mirrored in neuro-rehab when the field finally catches up, says Bonikowski. "We implicitly trust people and their opinions. If you put an expert on a personal injury case in court, there is an immense amount of trust invested in them by the patient's family, the court and society. "It is this degree of trust which AI machines would need to build up in order to become a fundamental source of support to expert opinion.” With other areas of healthcare now waking up to the power of AI, neurorehab’s widespread adoption of the technology looks to be close. "I would project that five years from now it will be commonplace for AI systems to be forming a fundamental platform for expert analysis and opinion; with human experts essentially validating what the AI is saying on the basis of interaction with the client and their environment. The analysis of all the historical and concurrent data coming in could easily be done by machine in five years. "It could produce an analysis which states, ‘on the basis of everything here, this is the extent of the injury sustained, here is a sense of the impairment and all the other disruptions that have occurred in terms of quality of life and here are the interventions that have and haven’t been effective’. "It could then show how an ideal healthcare system would handle the individual and the outcomes one could expect.

AI will be forming a platform of expert opinion in five years

"All of that could come into fruition within a five-year horizon.” An artificially intelligent army is not plotting an imminent invasion of neuro-rehab, however. Bonikowski sees AI’s presence as remaining complementary to - rather than threatening – professional roles in the sector. "We are seeing tedious and grinding processes being replaced by machines, because they are much better at them than we are. "The subtler, softer and empathetic human elements almost certainly will never be replaced. "The idea that machines would be able to interface with somebody with a multifaceted, severe set of disabilities is extraordinarily far-fetched. "But within five years we should have a really solid expert support system available, with an expert still required to validate findings and add some of the subtleties which may not come out of machine analysis. "Often in medico-legal reporting we are asked to give a view on what the patient requires to improve functioning. I think that will always require some human interface. "If you look in someone's eyes and tell them they are going to need a piece of surgery or a very long period of rehab, they are much more likely to engage with a human demonstrating genuine empathy than a machine which simply says ‘from the analysis, this is what you require’.”

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the curious case of the missing prescriptions Experts believe the rehab prescription has proven power to transform outcomes for people with brain injury. Yet figures suggest ignorance and apathy among professionals, and a lack of resources, are holding it back. NR Times reports on the battle to get the measure living up to its great potential.

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he rehab prescription (RP) is a simple but effective concept. It is a plan that defines what treatment is needed for the disabled person over the future weeks and months after a traumatic injury. According to guidelines, the RP should be an intrinsic part of the UK’s improving approach to trauma. A landmark report by the NHS Clinical Advisory Group (CAG) for Trauma to the government in 2010 paved the way for 22 major trauma networks (MTNs) to be set up across England. Their aim was to better coordinate pathways of care for adults following major trauma. As part of its recommendations, the CAG said all severely injured patients should have an RP, detailing their rehab needs and how these should be met after discharge from acute trauma services. Various other bodies gave these recommendations added momentum, including the British Society of Rehabilitation Medicine (BSRM), which stipulated that a specialist RP should be completed by a consultant in rehab medicine to identify patients with complex needs requiring referral to specialist in-patient rehab units. Patient involvement should be an

important facet of the RP. Since 2013, NHS England guidelines have stated that all patients with a severe injury severity score (ISS) greater than nine, should have a formal RP which should “ideally be patient held”. Despite the guidelines – and the behindthe-scenes push in rehab circles to get the emerging system performing as it should – RP knowledge and engagement among decision-makers varies hugely. When asked under Freedom of Information (FOI) about its usage of RPs, the trust behind St George’s Hospital one the country’s leading major trauma centres, covering a population of 2.6 million in the South East – said: “Neither NHS England or the BSRM requires a trust to issue a rehabilitation prescription on discharge.” In fact, out of 124 relevant trusts questioned recently about RP under FOI, 100 offered no response. While it may be presumptuous to suggest none of these are issuing RPs correctly, their refusal to meet the FOI’s obligation to respond is loaded with indifference and/or ignorance; especially given that, in most cases, CCGs referred the FOI request to them, confirming that they should have the relevant information. Of the 24 that responded, less

The majority of CCGs are completely unaware of the rehab prescription and are therefore not monitoring acquired brain injuries

than half said they gave the RP to GPs AND patients. All 211 Clinical Commissioning Groups (CCGs) were also questioned about their involvement in handing out RPs. Around 130 said they did not hold any information about RPs and 75 remained entirely silent. Only five offered any answers – but their responses suggested confusion about the RP. In one example, a CCG representing a large conurbation in the South East said it had only overseen five cases of brain injuries in which an RP was required. This is a staggeringly low figure for an entire year, suggesting a misunderstanding of what an RP is. Four CCGs, meanwhile, did not know that RPs should be given to GPs. The research was carried out by the ABI Alliance, a collective of major brain injury organisations. Group spokesperson Professor Mike Barnes says: “The majority of CCGs are completely unaware of RPs and are therefore not monitoring or following up on ABIs. They are basically saying ‘it is nothing to do with us’. But of course it is their concern because ultimately they pay for the services provided via the RP.” The issues raised by the ABI Alliance reflect those highlighted in the results of the first official audit of MTNs, published last year. While all 22 major trauma centres (MTCs) in that study said they were routinely completing the RP, only a third said they either “always” or “sometimes” gave it to patients. Two thirds said they used it only as a clinicallyheld tool. The National Clinical Audit of

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Specialist Rehab following Major Injury (NCASRI) also found that only two MTCs routinely completed all four of the recommended measurements of the special RP for patients with complex needs. Unlike trauma units in local hospitals, MTCs have a financial incentive to complete RPs. Under a best practice tariff, reporting the mere existence of an RP generates a payment of at least £1,500. Prof Barnes says: “Data suggests that 94 per cent of trauma units don’t think about the RP. It should be a part of good clinical practice and it’s a shame that there only seems to be a response if there is a financial incentive. It is a fundamental duty to tell complex injury patients what they need going forward.” Alex Ball, consultant in rehab medicine at University Hospitals of North Midlands NHS Trust, agrees that incentives for MTCs have caused RP issues elsewhere. “Beyond the main MTCs, there is no incentive to give an RP. While there are national standards that say we are supposed to do it, there is a huge ‘so what’ factor.” Lower levels of RP activity on trauma units are occurring as “nobody is breathing down

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their neck and saying they have to have it,” says Ball, although “some of the trauma units really are rolling up their sleeves and picking this up themselves". In terms of the RP overall, however, Ball believes: "There has been massive progress on this in the last five years. Five years ago, we were saying ‘a rehab what?’ “Going forward, we need to make sure everyone with an acquired brain injury gets a rehab assessment and plan. If that is badged up as an RP, then great. Someone with a brain injury caused by trauma may have very similar needs to a person with a non-traumatic brain injury. In future, the RP should really envelop [all] people that need it [not just trauma]." Ball underlines the value of the RP through the story of ‘Josh’ – a young man who sustained a brain injury in a car accident during a wild night in Wrexham. Keeping the patient and their loved ones informed, was a particularly key element of the RP in this case, she says. Josh suffered severe facial injuries as well as head trauma. He required a tracheostomy and spent 39 days in critical care. By day 250

he was having facial surgery and on day 365 he walked out of hospital. Initial goals set out on his RP included sitting on the edge of his bed for 30 seconds. Later, graded ward leave was added to his RP to see how he and his family would cope at home. “Josh’s story shows how the RP should evolve in stages. In this case, we had the hyperacute stage followed by the acute medical or surgical stage, then specialist rehab, community specialist and non-specialist rehab and then vocational rehab. “At the start, Josh wasn’t in a position to read his RP, but it was incredibly useful for the family to have a summary of things, spelling everything out. “The last time Josh came back to the clinic, he demanded an updated version of the RP because he wanted to see everything that happened to him and how he could take it forward into vocational rehab.” Professionals like Alex Ball are, or course, not always on hand to ensure RP delivery. “Not all centres have rehab medicine consultants to sign off specialist rehab prescriptions, which is a challenge in itself,” says Hannah Farrell, major trauma therapy

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lead at University Hospitals Birmingham NHS Foundation Trust. “There are significant numbers of patients and often very little resources and support staff within MTCs to be able to deliver this document and also to arrange timely reviews and updates of it. Some specialist RPs can take up to two hours to complete.” Farrell, a member of the Clinical Research Group for Major Trauma, explains that the lack of tariff funding is not the only reason for limited RP activity in trauma units. “Some centres also have the challenge of developing informatics infrastructure that enables us to populate the document electronically.” There is also an underlying reluctance to give RPs to patients, Farrell believes. “Rightly or wrongly, there is still some anxiety and apprehension about ensuring the patient

has this document in their hands. “At a multidisciplinary working group meeting last year, the strongest message to come out of discussions was that the RP must be patient-held. There is absolutely no excuse for it not to be. It should be [given to] the patient at an appropriate point in the pathway. It needs to be electronic, easily updateable and accessible by professionals and patients across the pathway…Ongoing multidisciplinary involvement and coordination is also paramount.” Despite numerous challenges facing the RP, it offers great potential as a catalyst for improved rehab journeys. To maximise its impact, and ensure the opportunities it presents are not missed, the ABI Alliance has set out four main action points. Firstly, the RP must be completed properly in all MTCs. Even with financial incentives, not

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.

every centre is consistently meeting its mandated RP duties. Next, the RP’s reach must be widened; to trauma units not already engaged in the process, and also to facilities handling milder brain injuries and non-traumatic ones, such as those caused by hypoxic injury. The group also urges that the “patient-held” part of official guidance is enacted and, finally, that the RP is a “live document”. The RP will be a key agenda point for the new All-Party Parliamentary Group (APPG) on brain injury, launched late last year. The ABI Alliance aims to work with the All Party Group to make sure these four recommendations become a reality and the RP becomes an invaluable aid in making sure that the disabled person receives the therapy and care they deserve. See page 40 for more on the APPG.

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

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plotting the route to recovery

Storytelling plays a vital role in helping young people come to terms with lifechanging brain injuries, the Childrenâ&#x20AC;&#x2122;s Trustsâ&#x20AC;&#x2122; Gemma Costello tells NR Times about the importance of narrative and self-image in supporting children past the psychological fallout of ABI.

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iny toy figures delivered an unlikely dose of neuro-rehab insight in London recently. Young Jimmy Stevens had been compelled to tell his brain injury story using Lego people. With an inch-high plastic man playing himself, he focuses the camera lens on the many frustrations of childhood brain injury. “Where are you speech?” says the lead character profoundly, later professing that “I find it hard to make friends”. In other scenes, we see him floating helplessly in bathwater and trying to open an impossibly big banana.

The film was shown at UKABIF’s annual conference and landed an award for 11-yearold Jimmy. It also reminded delegates about the often-overlooked, but powerful, tool in post-injury recovery – storytelling. Brain injuries can fundamentally alter behaviour, emotional control, cognitive ability and physical limitations. Yet to everyone else, there may be no overtly noticeable changes. While the world isn’t owed an explanation, establishing the story of the individual’s injury helps them both internally and in gaining the support they may need from others around them. Injuries to children and young people – whose lives are often already underpinned by insecurities about fitting in - can destroy confidence, self-esteem and hopes for the future. Storytelling is central in coming to terms with the changes in their lives, according to Gemma Costello, lead educational psychologist at brain injury charity, the Children’s Trust. “We work within a narrative approach, supporting the young person in developing an understanding of the situation they now find themselves in. Everybody has these stories about who they are, what they are impacted by within their environment, the relationships they have and what they would like to do in the future. We build up a picture of how they saw themselves preinjury, searching through their strengths and skills to develop a solid foundation of them as a person and what their hopes and interests have always been. “There are lots of different approaches to this. Some young people use photographs of their life to set out their experiences and achievements. They may include things they have enjoyed which have been really important to them, like holidays. “Another way is to draw things, including the ‘tree of life’, which is a narrative model that encourages young people to reflect on

Some children want the whole school to know what they've been through - others are much less keen their roots, where they come from, their strengths and skills, knowledge, hopes and dreams and the people in their lives that are important. It's all about strengthening the relationship with who they were pre-injury, before planning their skills and strengths going forward. "A lot of young people may have been high academic achievers; others may have excelled at sport. We work to explore these areas and find out what those achievements felt like. What were the things that they were doing really well in their learning? Was it retention, problem-solving or reasoning? Did they have really strong social skills?” With this vivid picture of the child pre-injury, and having encouraged them to gain an understanding of the nature of their injury, Gemma works towards instilling what she calls a “growth mind-set”. “We get young people thinking about what the transition looks like and how we see their strengths and skills here and now. We also focus on the progress they are making and are always trying to build a positive story. When they experience a challenge that might be trickier than it used to be, it's about helping them to overcome it in a way that still gives them their independence. “Once we know how they see themselves after their injury, and how they saw themselves previously, what do they know which could help them move forward as they return to school, their peer groups and their family? Reflecting on how the injury happened and impacted on aspects of their cognition or emotional regulation, helps them to think about what it means when they go back to school.” Instead of pondering on things they can no longer do, children are encouraged to think of new activities which cover similar

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Using the force: A Jedi maths lesson which features in 11-year-old Jimmy Stevens' short film about brain injury

ground to those they may have given up. “Perhaps they liked contact sports, so we could link them up with organisations to explore things like walking football or wheelchair basketball. Maybe they loved playing rugby but it isn't something they can do at this point in time. They could, however, play a role in coaching. We have had young people that have gone on to do coaching awards who are very much still connected to the sport they love.” Returning to school after a lengthy period of absence can be daunting, especially if the brain injury has had a profound impact on the child's abilities and behaviour. “Sometimes we put together a PowerPoint presentation or books which explain the journey they have been on. It's about ‘this is who I was before my injury, this is what has happened to me and these are the things I may find more challenging, such as problemsolving or regulating my emotions. This is

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why I might be more impulsive and not think things through in the same way that I did before and these are the things that people can do to help me’. "Often these materials are just for the individual, but they also help other people to have an understanding of their needs. It's about helping young people to understand how they learn, what helps them and how they can then take things forward and receive help in the process. “Some children want the whole school to know what they've been through and to understand why they might behave in a different way. Some are much less keen on sharing information about the injury so we work with them to figure out how to tell people what has happened. We help to generate those dialogues and stories which address questions about where they've been and why they are doing things in a certain way." The Children's Trust also offers sessions

for teachers and pupils to raise awareness about the issues the brain injured individual may be experiencing, and how people can support them. "A lot of young people may have had peer groups from school visiting them in hospital, so we try to think about how we can continue that contact if they are going into residential rehab. Using FaceTime or texting may be part of the young person's goals in terms of initiating interactions with peers

insight

without relying on those around them, for example. “Primary schools will often make videos and cards for the young person, and they in turn may make a video about a day in the life of rehab, which can be shown at school. We are always keeping that story going about the progress the young person is making, so that their peers continue to have an understanding of their situation.” In facilitating a smooth transition back to school, support is also required for teachers, says Gemma. “Teacher training doesn't cover much in terms of the neurological and neuropsychological aspects of an acquired brain injury. As educational psychologists, we have to help teachers understand that the pupil’s outlook could be a changing picture. While we know about the young person's injury and how their skills are currently presenting, we can't predict what the future looks like. What we do know, as we have to explain, is that this is an optimum period in terms of their rehabilitation. They need to be monitored closely for changes, fortnightly or even weekly initially, keeping an eye on their communication and physical needs and anything else that is changing." An amalgamation of various studies suggests that children make up between 35 and 50 per cent of all people attending UK hospitals after a recent head injury. Of the 295,000 under 16s who attend A&E with head injuries every year in England, one in 10 are moderate to severe cases, NHS figures show. Intervening forces like educational psychologists often face a consignment of other challenges on top of those directly caused by the injury. Growing up is a turbulent journey even without a life-changing medical emergency; and underlying insecurities which predate the injury will inevitably arise in therapy. “Every young person comes to us with a vast history of who they are and this is something we always have to bear in mind,” says Gemma. Such existing problems could increasingly

Teacher training doesn't cover much in terms of acquired brain injury

include anxiety and stress, according to reports. In December, the Children's Commissioner pointed to a 31 per cent annual rise in the number of children aged nine and under seeing psychiatrists. Overall there were 328,000 NHS psychiatry outpatient appointments for children in 2016/17, up from 241,000 the previous year. Some 60,000 of those were for the under-9s. Bullying and the constant popularity contests which play out on social media are some of the causes of the widespread misery, loneliness and self-hate uncovered in the report. The analysis came ahead of a green paper due imminently on children's mental health. Ministers will reportedly call for therapists to be sent into schools to deal with a rising tide of anxiety. Certainly, social media can contribute to self-esteem and confidence issues, says Gemma. “Social media is another way of creating a sense of self-identity in terms of how many likes and friends you have and so on. We are very mindful of this and support children and their families in thinking about safe use of social media, particularly for children who might be less inhibited as a result of their injury. “They may make postings they otherwise wouldn’t have made, potentially causing judgements and negative responses. Other vulnerabilities include befriending people that the young person may not know. “We also do a lot of preventative work in terms of thinking of ways to maintain safety online while enabling continued contact with the peer group. Some of our young

ONLINE:: Find this article online to watch Jimmy Stevens’ brain injury movie at nrtimes.co.uk

people have checklists; ‘would I want my mum to see this? Is there anything in this which could be offensive to other people? Is there certain language that shouldn’t be used?’” While social media may be something of an unknown quantity - in terms of its impact on the child’s self-esteem and motivation - families are undoubtedly a vital source of support; but they too need help. “The whole family has been through a traumatic experience. Understandably they’ve been with the young person in hospital every day and also with them during rehabilitation. It is a real challenge for families as the young person leaves us and goes back into the community. A lot of focus is on community skills with our occupational therapy team and nurses. They might go to the supermarket and generate a shopping list, prompt the young person to look for signs for different aisles, then go to the checkouts and get their money ready. Gradually we step ourselves back from the situation, as we ascertain the level of support the young person needs to achieve their independence.” For older children, hanging out with friends away from the watchful gaze of their parents, can also be an important part of regaining self-esteem and confidence. “They might want to go to the cinema with their friends but may require a high level of support and monitoring. Sometimes it requires thinking about people around the young person beyond their parents. Who can accompany them to give the young person that feeling of independence? It’s all about achieving a balance.”

NRtimes 55

events

Dates for your diary jan18 / 30

Northamptonshire Acquired Brain Injury Forum presents: Movement Disorders After Brain Injury (treatments and support strategies). The Sunley Conference Centre, Boughton Green Road, Northampton, NN2 7A. Email: events@abifnorthants.com or visit www.abifnorthants.co.uk

feb 18 / 7 - 10

The 10th World Congress for NeuroRehabilitation, hosted by the World Federation for NeuroRehabilitation (WFNR). Renaissance, Mumbai Convention Centre Hotel, Powai, Mumbai, India. See www.wcnr2018.in.

NRtimes

Brain Injury: Out of Focus - the identification and treatment of the lesser explored complications of brain injury. British Medical Association House, London. Find details on www.abisolutions.org.uk.

Two-day introduction to motivational interviewing in brain injury rehabilitation: Advancing your practice. Anthony Gold Counting House, London Bridge, SE1 2QN. Find details on www.ukabif.org.uk.

Brain injury: A family and carer perspective â&#x20AC;&#x201C; Headway in North Wales conference. The Kinmel Hotel, Abergele. Details available on www.headway.org.uk.

mar 18 / 6

Two-day introduction to motivational interviewing in brain injury rehabilitation: Advancing your practice. VP Forensics Lake View Drive, Sherwood Park, Nottingham, NG1 50HT. Find details on www.ukabif.org.uk.

The Arts Therapies and Brain Injury Conference : Optimising Outcomes across Assessment, Treatment and Care, presented by Chroma. There is now greater awareness of the clinical importance art and music therapies can play in furthering successful client outcomes as part of the overall MDT approach. Delegates will discover the latest evidence-based research from world leaders in this area, as well as practical sessions in which delegates can explore these approaches. British Medical Association House, London. Find details on www.abisolutions.org.uk.

events

Brain injury connections: Family matters. The event will highlight some of the wider concerns affecting brain injury patients and their families/carers, such as Post Traumatic Stress Disorder, the role of the family in rehabilitation, communication issues, bridging the funding gap, and human rights regarding relationships. 9am – 5pm, American Express Community Stadium, Brighton. To register your interest, or for more information, please contact the team on 01293 861214 or email events@asb-law.com.

apr 18 / 19

Risky business – the challenges of acquired brain injury through the stages of life. Inner Temple Hall, Crown Office Row, London, EC4Y 7HL. Email info@biswg.co.uk for details.

Managing and improving your catastrophic injury caseload. Radisson Blu Hotel, The Light, The Headrow, Leeds, LS1 8TL. Email events@emgsolicitors.com to book your place.

may 18 / 10

Is it worth it? Capitalising Investment to Value Life after Brain Injury. This year’s Head First Conference aims to investigate the cost-benefits of ‘specialism in brain injury’ and investing knowledge, time and resources to achieve positive outcomes for individuals with brain injury and their families in developing their new lives. Central Hall, Westminster, London. Find details on www.abisolutions.org.uk.

jun 18 / 6+7

European Neuro Convention. Europe’s “only trade event from brain and spine”. Event focuses on diagnostics, surgical equipment, rehabilitation and brain stimulation. Excel London. See www.neuroconvention.com for details.

The Way Ahead A weekend event bringing together over 300 delegates including brain injury survivors, family members, carers, trustees, committee members and volunteers for learning, sharing and socialising. Yarnfield Park Conference Centre, Staffordshire. Find details on www.headway.org.uk.

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

NRtimes

clocking off

Petrol heads

Japanese car giant Nissan wants to read your mind. The firm is working on a new “brain-to-vehicle” system which interprets brain signals and predicts the driver’s next move; like turning left, or taking off that ridiculous, electrode-laden hat. The next step must surely be driver-to-driver brain reading, offering a chance to tell tail-gating Audis and middle-lane dawdlers exactly what you think of them. For now we’ll have to make do with traditional horns and finger gestures.

Jumping straight back in Winter Olympics fans could have a British neuro-rehab hero to cheer on in February. Team GB’s aerial skier Lloyd Wallace was in a coma in August, after a crash landing in training which caused serious concussion and left him with no memory of the accident. Remarkably, he was back in training by October and, at the time of writing, looks a good bet to qualify for South Korea. Break a leg Lloyd (not literally).

Eighty-mile mission

Cutting corners – and fat

Crustacean conundrum

By this time of year most fitness resolutions will have disappeared into an ocean of guilty pleasures and inertia. There is an easier way, however, thanks to the marvels of brain technology. Modius Health is selling a headset which apparently tricks the brain into thinking you are working out. Low level electric current stimulates the vestibular nerve that in turn influences the hypothalamus — the part of your grey matter which controls appetite and metabolism. Your body’s fat store is released to fuel these imagined exercises and, as a result, festive weight is finally shed. At £369 it costs about the same as an annual, and cruelly neglected, gym membership.

An intriguing new book to get your claws into this year is Lessons from the Lobster by Charlotte Nassim. Over the last four decades, research on thirty neurons in the stomach of a lobster has yielded valuable insights on the human brain. Neuroscientist Eve Marder’s focus on this tiny network of cells is described accessibly by Nassim, tracing the evolution of a supremely gifted scientist's ideas. A lobster's digestion and the human brain may seem light years apart. Find out how the gap was bridged when the book is released in June. Pre-orders are currently available at Waterstones.

NRtimes

A true David and Goliath battle played out across the English-Welsh border recently. A disabled charity worker took on the might of Google by driving his 8mph wheelchair almost 80 miles from Cheltenham to Cardiff in protest against the internet empire’s lack of disability options on its mapping app. Ahead of his journey, which took place entirely on cycle paths, Adam Stanton-Wharmby told his local paper: “You don’t know where the pathways are and you don’t know if there are dropped kerbs or anything like that. The London Tube app has a disabled route option but Google Maps doesn’t. It means you have to do more background work as a disabled person. “But I have a wheelchair that is powerful enough and versatile enough to get out places. So why not drive somewhere?” The feat was carried out to raise funds for charity as well as prove a point to Google. The search engine defended itself, passing the buck to other app users rather than its own developers. Wheelchair-friendly locations have recently been incorporated, it said, and it is now possible for anyone to add accessibility information for places like restaurants and shops.

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

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

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

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 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

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

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