Summer 17
neuro rehab
NR
issue 3
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QUARTERLY
spinal injury crisis Action plan for a fractured system
trouble abroad
When foreign accents appear overnight
out of the abyss Global locked-in rescue mission
brighter future
picturing a life beyond limits
justice fight why unfair trials must stop
In association with
Christchurch Group is the UK’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
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Outpatient rehabilitation
Community support and outreach
For more information visit:
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Christchurch Group Neurological Rehabilitation
welcome
EDITOR'S NOTE
Welcome to the summer '17 edition of NR Times, your quarterly update on the latest developments in neuro-rehab for brain and spinal injury professionals. Two rarities occurred at a neuro conference recently. Firstly, the scourge of the stressed-out events manager, empty chairs, were nowhere to be seen. But, even more unusual, was the phenomenon of delegates filling every inch of floor space by sitting on the carpet, unable to find a seat. Others peered through open doors, hanging on the words of each speaker. If there were rafters at London’s Excel Centre, no doubt they’d be hanging from them too. The jam-packed nature of each session at the European Neuro Convention bodes well for the outlook of neuro-rehab. Most talks, ranging from stroke and virtual reality, to the strange cognitive abilities of limbs, were focused on the future. The majority of attendees we spoke to were there to learn new ways of improving rehab outcomes. The overriding mood was that of optimism – that technology and advances in neurological knowledge are conspiring for the greater good. In putting together this issue, there is certainly a feeling that we are approaching what author Malcolm Gladwell calls ‘the tipping point’. Lots of individual pockets of activity are gradually building up to a critical mass that will eventually tip the scales. The result could be a sudden gear shift as our ability to tackle neurological diseases accelerates. That may be a few years away, but our feature on TMS technology is a great example of this sense that things are speeding up. The magnet-based technique has been around for hundreds of years, if you take it back to its very roots. Yet the neuroscientists and tech geniuses who’ve been messing around with it in labs all over the world for decades, now have us on the verge of a TMS revolution.
Giving power back to the paralysed is just one of the amazing possibilities it presents. The neuro-rehab garden isn’t entirely rosy, of course. Clients with neurological conditions and injuries continue to be let down, misunderstood and misdiagnosed. Fortunately, determined individuals and groups are playing their part in contesting these problems. In this edition we uncover worrying failings in the criminal and civil justice systems, which are putting the brain injured at risk. We also learn of a looming spinal injuries crisis and the need for changes to the treatment of locked-in syndrome. Experts in the field, and patients who came out of the other side, have the answers to these issues - if only authorities would listen to them. On these pages you'll also find updates on the latest treatments, trends and research changing the neuro-rehab world. We hope you can fit NR Times into your suitcase and poolside reading schedule - as you recharge your batteries over the summer. Andrew Mernin Andrew@aspectpublishing.co.uk
Published by Aspect Publishing Ltd in association with UKABIF Aspect Publishing, 20-22 Wenlock Rd, London, N1 7GU Registered company in England and Wales. No. 10109188. All contents ©2016 Aspect Publishing Ltd. Features labelled 'sponsored' are paid advertorials which support the production of this magazine.
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contents
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news The latest from the world of neuro-rehab
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out of
the abyss The woman on a world mission to rescue locked-in patients
justice fight How court case failings are disadvantaging the vulnerable
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trouble abroad after injury Navigating the syndrome that turns the brain injured into foreigners overnight
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tms tipping point On the eve of a brain tech revolution
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cover story
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talking
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the talk Communication problems and how to approach them
Picturing a brighter future after injury
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injury crisis World expert delivers his plan of action as NHS struggles with spinal cord injury surge
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social media menace Fighting the predators threatening the online safety of your clients
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events Dates for your diary in the months ahead...
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clocking off
Postcards from the sidelines of neuro-rehab NRtimes 05
analysis
Where do we go from here?
After the parliamentary turbulence of the last quarter, what does the new political landscape mean for neuro-rehab? Andrew Mernin reports This year’s Queen’s Speech almost passed by unnoticed. The traditional state opening of parliament with its customary pomp and ceremony was, for once, a much more low-key affair. It wasn’t simply the absence of a crown or a horse-drawn carriage that raised eyebrows, but the curtailed breadth of the government’s legislative plan for the next 12 months, announced by Her Majesty in parliament this June. Those with an interest in mental health and neuro-rehab will have noticed the inclusion of a mental health bill. It stood out because it was a rare pre-election promise, made by the prime minister during Mental Health Awareness Week, that made it to the Queen’s Speech. Others fell by the wayside, as political collateral damage from a bungled election campaign and resulting hung parliament. Campaigners have waged a decades-long fight for funding and esteem for mental health among successive governments in England and Wales. They will be hoping the inclusion of a mental health bill marks an inflection point. High profile campaigns by charities including MIND have caught the public’s attention and propelled mental health up the political agenda. Recent interventions, including by Prince Harry speaking of his own battles with depression following the death of his mother, have further removed the stigma that mental health has
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struggled to shake off. The link between brain injury and subsequent mental health diagnosis should not be underestimated. As the brain injury association, Headway, points out “brain injury can lead to mental health issues developing” or can exacerbate pre-existing conditions, including depression, anxiety, anger, cognitive issues and problems with regulating behaviour. Such cases of dual-diagnosis come with the added challenge of seeking the right support from entirely separate parts of the health system. Doing so locally is beyond the experience of those who rely on such services. Joining up treatment and support programmes for people suffering new or increased mental health issues arising from brain injury must be part of this new kaleidoscopic government’s review of mental health. The legislation has been left largely unchanged in England for 34 years. Despite spending £11.4bn in 2016/17, and a further £1bn every year by 2020/21, mental health remains underfunded. According to NHS England, mental illness accounts for almost a quarter of the burden of disease at around 23 per cent, but receives just 11 per cent of NHS funding. Meanwhile nine out of 10 patients with diabetes are in receipt of treatment, but just over a quarter of people with mental illness receive treatment for their problems.
Brain injury group comes back from the brink
But in a further sign that the tide could be turning, cash for mental health was a notable inclusion in the deal struck up between the Conservatives and their now even closer political pals, the Democratic Unionist Party. Theresa May’s early election gamble might cut short her premiership and the ‘dementia tax’ manifesto is described as the new longest suicide note in history. But it could prove to be a moment when mental heath finally reached a new height in parliament. The Tory DUP deal includes £10m per year over five years to pay for mental health provision in Northern Ireland. That it featured in such a make-or-break deal of political horsetrading is in itself a positive signal of just how high up the agenda funding for mental health has risen. There is no shortage of areas in which to spend the money. Chief among them will be the growing trend of long distance treatment, described by the British Medical Association as “endemic”. The union says the number of out-of-area placements – the practice of sending mental health patients far away from friends and family to receive care – soared by 39 per cent from 4,213 adults in 2014/15 to 5,876 in 2016/17. With a newfound commitment and seemingly the cash to follow for mental health, health ministers’ in-trays will fill up quickly with a string of issues to resolve.
The launch of a new brain injury group backed by politicians is back on track after being thrown off course by the snap election. The all-party parliamentary group (APPG) focused entirely on brain injury was due to be launched at Westminster in April, with Labour MP Chris Bryant (pictured) chairing it. The involvement of Conservative MP John Hayes and Baroness Tanni Grey-Thompson had also been secured as part of its leadership. Then came news of the election, and the group was parked – much to the disappointment of charities involved, especially as 13 years had passed since the last brain injury APPG disappeared. With Chris Bryant contesting his seat in Rhondda and parliament dissolved, the group’s future looked uncertain. Fears that momentum had been lost look to have been misplaced, however, with Chris Bryant’s office confirming to NR Times that the group is definitely going ahead as planned. Both Bryant and John Hayes reclaimed their seats in parliament and roundtable discussions for the group are now scheduled for September, after summer recess. By this time, discussion points might include the ongoing audit of UK rehab services commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit (NCA) Programme. The National Clinical Audit of Specialist Rehabilitation following major Injury (NCASRI) is the first to examine the provision of specialist rehabilitation following major trauma in adults. As it approaches the end of its second year, a decision is due in autumn on whether to extend it from three to five years. One worrying trend identified so far is a lack of involvement of rehab medicine (RM) consultants at major trauma centres. NHS England specifies that RM consultants must confirm the category of need of complex rehabilitation cases and “expedite their referral and transfer to an appropriate specialist rehabilitation service”. However, the NCASRI audit shows a lack of their input into decision-making at many of MTCs. “We therefore need to explore alternative approaches to the identification of patients with complex rehabilitation needs,” a recent NCASRI update noted. Provision was particularly poor in London where there was only one major trauma centre-funded session for an RM consultant across the four large major trauma networks in London. MORE NEWS
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From brain injury to suicide – a tragic, cautionary tale of let downs and hidden risk A brain injured Somerset man who committed suicide was failed by a system beset with disjointed decision-making and poor sharing of information, a damning report has revealed.
Somerset Safeguarding Adults Board’s (SSAB) 2016 review into the death of ‘Tom’, paints a depressing picture of a collective of professionals being unable to handle the often-chaotic lives of people with brain injuries and additional drug and alcohol issues. Tom died in 2014, aged just 43, prompting a serious case review which was finally made public in June following an embargo. At 22 he suffered a head injury in a road traffic accident and subsequently developed epilepsy, chronic insomnia, depression and muscular and skeletal pain. To those that knew him, however, he was “intelligent, politically aware and anti-establishment”. Yet, amid intermittent drug and alcohol problems, he was also known to have come to the belief that his life was not worth living following his brain injury. The report uncovers a glaring lack of in-depth mental health assessments,
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which was seemingly unquestioned by professionals, despite their knowledge that he was “situationally incapacitated” by exploitative and drug using peers. The Somerset Partnership Trust concluded that Tom had capacity when assessed by Mental Health Services in November 2013, seven months before his death. This was at odds with the opinion of Tom’s family and Musgrove Park Hospital, which said Tom was “identified as having a number of factors that may have impacted on his capacity for some decision-making. This included brain damage…epilepsy and drug/alcohol use.” The report states that Somerset County Council’s adult social care, Somerset Partnership Trust, and health and social care body Turning Point: “Did not provide a service to a man who was brain injured, who was depressed, who could not sleep, who abused alcohol and drugs and who expressed his intention to take his own life.
He was intelligent, politically aware and anti-establishment "Services do not easily respond to individuals whose lives appear chaotic and who are barely compliant.” The review also shows how concerns from various parties were not acted upon. It notes: “[The charity] Headway had bent its own rules for over 13 years to support Tom; Housing Options officers had sought to protect him from harmful relationships; and the police had sought, inter alia, to protect visiting professionals from his hazardous living circumstances. “So although no single agency could address Tom’s support needs, it appears that nothing impelled or even required health and social
care services to work collaboratively within and across their own provision to provide direction and resolution. "There was, and there remains, a strong sense that a man with a brain injury, depression and addictions requires the sustained assistance of mental health services – and yet Tom was deemed ineligible.” The report also found that the “continuities and discontinuities” spanning Tom’s brain injury were not known to professionals. He frequently said his life was not worth living but his final risk assessment did not take account of his wish to end his own life. Report author Margaret Flynn also highlights apparent buck-passing between those that might have better intervened. In October 2013 Headway sought health and social care assistance – and a social worker suggested contacting a GP. Somewhat farcically, the GP then suggested calling on a social worker – as well as Tom’s sister. Other conclusions include the fact that requests for help from Tom’s family did not result in integrated working. Also, practices and cultures of organisations and professional groups got in the way of grounded decision-making. The report sets out a series of guidelines
Services do not easily respond to individuals whose lives appear chaotic and who are barely compliant
– some of which have since been followed up. One recommendation which may have a wider impact on neuro-rehab professionals is that a person’s traumatic brain injury and mental capacity should be “foregrounded in all professional assessments and referrals”. It also suggests that family involvement is prioritised “with a view to understanding the continuities, the discontinuities and the unpredictable and complex process of reconstructing the self which arise from such a critical injury." Other recommendations largely focused on sharing Tom’s story in various ways among professionals and incorporating it into ‘multi-agency’ training. Since the report was written, some of the authorities involved have issued public responses.
The SSAB - the statutory partnership which includes Somerset County Council, Avon and Somerset Constabulary and the CCG to protect vulnerable adults from harm – expressed sympathy and vowed that lessons had been learned. Chairman Richard Crompton, said: “Safeguarding adults is everyone’s business and an absolute priority for the board and its partners, as it should be for everyone, and this review has highlighted a number of areas which require our continued focus and attention. "The review into Tom’s death made a number of recommendations, which the SSAB has fully accepted and will continue to oversee and monitor.” While the report analyses specific failings in Somerset, it also serves as a stark reminder to neuro-rehab professionals of the risk of suicide after brain injury. Suicide and head trauma have long been linked, with evidence growing about the extent that brain injuries increase suicide risk. In June, the American Journal of Preventative Medicine published a study which identified brain injury as one of several illnesses linked to heightened suicide risk. While sleep disorders and HIV/AIDS reportedly represented a two-fold increase in suicide risk, it estimated that brain injuries made individuals nine times more likely than the norm to take their own life. The study included 2,674 individuals who died by suicide between 2000 and 2013, along with 267,400 controls matched on year and location in a case-controlled study. A large epidemiological survey carried out in Denmark in 2001, which covered 145,440 head-injury patients, also noted that suicides were more than double the norm after skull fracture and quadruple after brain haemorrhage. Even mild trauma has been linked to suicides by scientists. A Canadian study last year hypothesised that people who sustain a concussion increase their risk of suicide three-fold. Out of 100,000 concussion patient records, there were 31 suicides – three times the population average – it was reported in the Canadian Medical Association Journal. MORE NEWS
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