NEURO REHAB
NR
TIMES
ISSUE 4 Autumn 17
PLAYER POWER The untapped potential of video game therapy HEAVEN SCENT How sniffer dogs could save millions of lives
QUARTERLY
DIFFERENT STROKES
The dangers of misdiagnosis
LETTING GO
New clarity on life and death decisions
ADVENTURES IN REHAB TAKING THERAPY INTO THE GREAT OUTDOORS
RUGBY REPORT GAME FACES UP TO CONCUSSION THREAT
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
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 autumn '17 edition of NR Times, your quarterly update on the latest developments in neurorehab for brain and spinal injury professionals. NR Times reaches you in the aftermath of what seems a pivotal breakthrough in neuroscience. In September, a brain injured man who had been in a persistent vegetative state for 15 years showed signs of consciousness thanks to pioneering nerve stimulation therapy. He was reportedly able to track objects and opened his eyes wide in surprise when an examiner moved her face close to his. He could also respond to basic requests, including moving his head. Data recordings revealed increased brain activity in areas linked to movement, sensation and awareness. The project involved an implant in the man’s vagus nerve in his neck. A 20-minute operation followed by a month of stimulation resulted in improved attention, movement and brain activity, as the man entered minimal consciousness. The findings are exciting but clearly much more research is needed. The work, led by Angela Sirigu of the Institut des Sciences Cognitives Marc Jeannerod in Lyon, presents new possibilities in the push to communicate with patients with disorders of consciousness. It also presents a minefield of ethical issues and ‘what ifs’ to an area of healthcare already awash with uncertainty. Some clarity has been given in recent weeks, however, on the life-and-death decisions affecting vegetative state and minimally conscious patients. Amid fevered debate about what a recent ruling means for patients and doctors, we sought to paint an accurate picture via a leading expert. See inside for our special report from prominent voice on the issue, Professor Celia Kitzinger. In another of our autumn features, Dr Simon Kemp, chief medical officer at English rugby’s governing body the RFU, tells us how the game is getting to grips with concussion. Head injuries in contact sports are a hot topic as researchers continue to uncover evidence of
short and long-term damage. Dr Kemp takes us on a journey from the elite level down to muddy school pitches, depicting a game in transition which is stepping up the fight to protect players from concussion. Among other highlights this quarter, find out how dogs could revolutionise diagnosis of neurological diseases and discover why the great outdoors can be so transformative in neuro-rehab. We also report on nut allergies and brain damage, stroke in young people, neural gaming, the power of group singing in therapy and new findings on the so-called two-year recovery window. This edition marks the end of NR Times' first year in existence. We thank everyone who has got involved with the magazine over the last 12 months and look forward to corresponding with many more of you in the future. If you'd like to catch up on previous editions, find us online at nrtimes.co.uk and do please let us know of any exciting developments in neuro-rehab via the email address below. 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 ©2017 Aspect Publishing Ltd. Features labelled 'sponsored' are paid for by our sponsors who support the production of this magazine.
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CONTENTS
06
NEWS The latest from the world of neuro-rehab.
18
22
DIFFERENT STROKES Generations X and Y face rising threat.
AMY AWAKENS THE WORLD TV researcher's brain damage story offers global reality check on allergies.
30
KNOWING WHEN TO LET GO New clarity on life-and-death decisions over disorders of consciousness cases.
34 04
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SMASHING WINDOWS Time to bust an old neuro-rehab myth?
CONTENTS
38
CONCUSSION REPORT How rugby is getting to grips with its most fearsome foe.
44
54
PLAYER POWER
The untapped potential of video game therapy.
NOT TO
BE SNIFFED AT The dogs on the trail of neurological conditions.
COVER STORY
48 Taking therapy into the great outdoors.
58
How group singing is tackling post-stroke isolation, loneliness and depression.
60
EVENTS
Dates for your diary in the months ahead...
62
CLOCKING OFF
Notes from the sidelines of neuro-rehab.
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ANALYSIS
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ANALYSIS Cost pressures and care failings at the heart of maternity ward brain injury issue Maternity units have come under intense scrutiny in recent months amid signs that brain injuries at birth are on the rise. Awkward questions have also been raised about how the public purse can handle the financial fallout of such devastating incidents. Compensation claims for newborns suffering brain injuries or cerebral palsy soared 23 per cent in 2016/17 to 232, or around four a week. Their total claim value was £1.9bn, while NHS Resolution – which compiled the data – said the complex care needs of cases will soon push such claims pay-outs to £20m per child. Compensation costs for patients seriously harmed by NHS negligence are now "unsustainable", it warned in its annual report. It added that these soaring costs are "dominated" by the "very high value of claims arising from brain injuries at birth". Decreased oxygen (hypoxia) and blood flow to the brain (ischemia) during delivery can have a profound effect on the babies. NHS Resolution, which handles litigation action against the NHS, said that lessons must be learned to improve outcomes for new-borns. The cost of compensating families “will continue to increase for years,” it reported, adding that these rises are “unavoidable without significant law reform”. "This means making some difficult decisions on delivering compensation only where it is due and ensuring that the NHS is not overcharged for legal costs," said chief executive Helen Vernon. Giving parents the quality of care their child needs – often well into or throughout adulthood – cannot be done on the cheap. Carrying out legal reforms without giving either party an unfair deal, also seems an immense challenge. This is tempered by increased numbers of cases resulting in pay-outs once they have been through the courts. In 2016, the NHS paid compensation in 76 per cent of cases where the claimant issued court
proceedings – a four per cent rise on 2015. Prevention of these injuries is, of course, the overriding priority. The rise in maternity ward injuries has, in part, been blamed on a general push by staff to encourage "natural" births. Peter Walsh, chief executive of the Action against Medical Accidents campaigning group, said: “More research needs to be done, but moving away from the cult-like fixation with so-called normal births is a step in the right direction.” His comments came after the Royal College of Midwives (RCM) announced it had ditched its 12-year campaign for normal births and indicated that women will no longer be advised to have babies without medical intervention. It will instead focus future campaigning on encouraging "better births" and seek to improve care for all women, including those with medical and obstetric complications. The Normal Birth Campaign was actually dropped by the RCM three years ago. The media only noticed when an online advice article with tips for a normal birth was removed from the organisation's website. The dangers of normal birth promotion were underlined in a recent enquiry into the disproportionate amount of baby deaths at the University Hospital of Morecambe Bay NHS Foundation Trust between 2004 and 2013. It exposed a group of midwives who insisted on natural birth “at any cost”. Up to 19 infants and mothers died under the trust’s care between 2004 and 2013 in cases where there were significant or major failures of care. Earlier this year, a report by the Royal College of Obstetricians and Gynaecologists concluded that most baby brain injuries in labour are avoidable. It analysed 1,136 stillbirths, neonatal deaths
and brain injuries that took place on UK maternity wards in 2015. Three quarters of the babies – 854 of which had sustained brain injuries – might have had a different outcome if they had received different care, it said. Poor training on maternity ward equipment has been identified as a possible contributor to brain injuries and ultimately fatal problems in labour. In May, a West Yorkshire coroner made recommendations to improve midwife training following an inquest into the death of baby Billy Willson. He was three days old when he died, after being starved of oxygen at birth. A midwife, who failed to spot pathological signs on the baby’s monitor, was newly qualified and working her first night shift at Pinderfields Hospital. Giving evidence to the inquest, she admitted she had not received appropriate instruction or training in how to interpret monitor readings, during her Midwifery Course at Bradford University. She had also not completed an e-learning programme on the subject which formed part of her training. It was commonplace for student midwives to qualify without undergoing essential training, according to an expert witness. As reported in the Telegraph, coroner David Hinchcliff urged the Nursing and Midwifery Council (NMC) to take a series of urgent steps to prevent future deaths. The body began a “wholesale review” as a result, investigating the standards student midwives need to reach to become qualified. Previously, the same coroner had raised concerns after the death of a baby boy, Maxim Karpovich, in similar circumstances, in March 2015. He wrote to the heads of the RCM and the Royal College of Obstetricians and Gynaecologists calling for action, after midwives and a junior doctor at Leeds General Infirmary failed to detect abnormal readings.
Moving away from this cult-like fixation with so-called normal births is a step in the right direction MORE NEWS
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Landmark ruling could transform feeding tube removal process Decisions to withdraw artificial nutrition and hydration from patients with disorders of consciousness can potentially be lawfully made without a judge’s approval, following a recent ruling. Various types of treatments for vegetative state and minimally conscious patients can be halted in the best interests of patients following discussions between doctors and relatives. The withdrawal of a feeding tube, however, has depended on the agreement of a judge. It was believed that removal without a court’s approval was unlawful, regardless of the advice of doctors and wishes of family members. A ruling in September has provided clarity on the issue and paved the way for feeding
tube withdrawal decisions without court intervention. The judgement, by Mr Justice Jackson who sits in the Court of Protection, centred around a 50-year-old woman with Huntington’s disease, referred to in court as "M". The patient had suffered with the condition for 14 years, eventually becoming bedridden in hospital and fed by via a tube. After M spent 18 months in minimal consciousness, Mr Justice Jackson said nutrition and hydration withdrawal was lawful and in M’s best interests. She died in August. In the subsequent judgement, Jackson said the decision should not have required his approval. The court case had racked up £30,000 in legal costs. "The decision about what was in M's best interests is one that could lawfully have been taken by her treating doctors, having fully consulted her family and having acted in accordance with the MCA
(Mental Capacity Act) and with recognised medical standards," the judgement stated. Feeding tube withdrawal decisions have been referred the Court of Protection for almost 25 years, following a House of Lords ruling that Tony Bland, who was left in a persistent vegetative state after the Hillsborough disaster, should be allowed to die. Representing M, Irwin Mitchell said the ruling was a "landmark" decision for a "previously unclear" law. Read the ruling in full on nrtimes.co.uk. See page 30 for a special report on the life-and-death decisions affecting people with disorders of consciousness.
The decision could lawfully have been taken by her doctors having consulted her family
New MS markers detected
Calling all ABI heroes
Scientists have potentially uncovered new markers for progressive multiple sclerosis. A certain cytokine – molecules which aid cell movement and communication – has been found to increase inflammation within the central nervous system and in turn worsen the disease. Researchers believe a cytokine called macrophage migration inhibitory factor (MIF), along with its related protein, D-dopachrome tautomerase (D-DT), could be associated with progressive MS. The researchers also found evidence of links between an enhanced expression of MIF and a gene variant which occurs more frequently in MS patients with progressive disease. The findings suggest that a simple genetic test could be used to identify MS patients at risk of developing the more severe form of the disease. With medications to halt the disease currently under development, the researchers say such a therapy could possibly be used as part of a "precision medicine approach" that would be most effective in patients who have the MIF genetic susceptibility. “The value of this discovery to patients is that there are now approved therapies, as well as new ones in development, which target the MIF pathway and could be directed towards progressive MS,” said co-senior author Richard Bucala, professor of medicine, pathology, and epidemiology, and public health at US university, Yale.
The search is on for individuals and organisations deserving of recognition for their work with acquired brain injuries. The UK Acquired Brain Injury Forum (UKABIF) is now accepting nominations for its awards scheme which celebrates innovative and inspirational achievements in the ABI field. Categories for the UKABIF Awards 2017 include Lawyer of the Year, Clinician of the Year and the Stephen McAleese Award for Inspiration. Stephen sustained a brain injury after contracting meningitis when he was 15 and dedicated his life to promoting understanding of brain injury, helping others from all walks of life along the way. He sadly died in 2010. An independent panel will judge award entries, with the winners announced at UKABIF’s 9th Annual Conference on 13 November at the Royal Society of Medicine in London. To enter or nominate for the awards visit www.ukabif.org.uk to download an entry form or contact info@ukabif.org.uk / 0345 608 0788 for further details.
Stephen sustained a brain injury at 15 but dedicated his life to helping others MORE NEWS
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Gridiron linked to cognitive disorders
Playing American football before the age of 12 may have significant behavioural and cognitive consequences in adulthood, a US study has found. Research shows that children who played the game before age 12 had a threefold increased risk of depression and a twofold increased risk for impaired behavioural regulation, apathy, and impaired executive function, compared to their counterparts who started playing at age 12 or older. Early adolescence is a critical time for brain development. Growing evidence suggests exposure to repetitive head impacts at this time may disrupt brain maturation and increase the risk of long-term clinical impairment. "I don't think it makes sense to have our kids exposed to repetitive head impacts during a period of neurodevelopmental vulnerability," author Robert A. Stern told the medical journal, Medscape.
Nursing drive gathers pace
A new organisation which aims to give neuro-rehab nurses a louder collective voice and enable them to share ideas will have its first major gathering in October. The United Kingdom Alliance of Neurorehabilitation Nurses (UKANN) was formed earlier this year to support and unite neuro-rehab nurses across the UK through various activities. On 20 October it will host a session entitled "Working with Families" presented by Dr Audrey Daisley, consultant clinical neuropsychologist and lead for OCE Clinical Neuropsychology and Family Support Service at the Oxford Centre for Enablement. The event, at Jury’s Inn, Oxford, is a satellite session of the British Association of Neuroscience Nurses Conference. The presentation will be followed by a short meeting of UKANN’s steering committee. With several vacancies in the group, delegates are encouraged to take part in discussions.
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