NR Times Autumn '17 edition

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

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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

06

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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

08

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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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Breakthrough in on-thespot concussion diagnosis A smartphone app which could objectively diagnose concussion and other traumatic brain injuries by detecting changes in a person’s pupils, is being developed in the US. The app could have implications for contact sports, in the military or among elderly people that may be prone to falling.

PupilScreen can detect changes in a pupil’s response to light using a smartphone’s video camera and "deep learning" tools, which utilise artificial intelligence, to quantify changes imperceptible to the human eye.

10

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This pupillary light reflex has long been used to assess whether a patient has severe traumatic brain injury, (TBI) and recent research finds it can be useful in detecting milder concussions — opening up an entirely new avenue for screening.

A team of University of Washington computer scientists, electrical engineers and medical researchers have demonstrated that PupilScreen can be used to detect instances of significant TBI. A broader clinical study in the coming months will put the app in the hands of coaches, emergency medical technicians, doctors and others to gather more data.

This opens up an entirely new avenue for screening An important strand of this study will be investigating which pupillary response characteristics are most helpful in determining ambiguous cases of concussion.

The researchers hope to release a commercially available version of PupilScreen within two years.

See p38 for more on concussion diagnosis in sport.

MND trust launched

Former British Lions and Scotland rugby player Doddie Weir has set up a trust to support his battle with Motor Neurone Disease (MND).

Since diagnosis in summer this year, Weir has been talking publicly about the degenerative condition, helping to raise awareness and funds for MND causes.

The trust, My Name’5 Doddie (five being Weir's famous rugby shirt number), aims to support research and provide grants to people living with the disease.

Edinburgh-born Weir won 61 caps for Scotland and was part of the squad which won the 1999 Five Nations title. The 6ft 6ins forward was also called up for the British and Irish Lions’ 1997 tour of South Africa.

Boogie’s the new brain booster Dancing can reportedly counteract age-related decline of grey matter, new research shows.

A study by the German Center for Neurodegenerative Diseases in Magdeburg, found that older people who routinely partake in physical exercise can reverse the signs of aging in the brain,

but dancing influenced the most notable positive changes.

Lead author Patrick Müller said: "The results of our study suggest that participating in a long-term dance programme that requires constant cognitive and motor learning is superior to engaging in repetitive physical exercises in inducing neuroplasticity in the brains of seniors.

"Therefore, dance is highly promising in its potential to counteract age-related

grey matter decline."

Investigators compared an 18-month dance training programme with 18 months of endurance and flexibility training in terms of its effect on hippocampal volume and balance in healthy senior volunteers (aged 63 to 80 years).

The hippocampus is significant since it is associated with learning, memory and balance, while also being the site of adult neuroplasticity in the brain.

Overall 81 per cent of brain injured veterans were either working or in job training two or three years after leaving rehab.

Rehab improves veteran employment rates

Four in five military service members who suffer brain injuries may be able to return to military or civilian work after they get treatment at inpatient rehabilitation facilities, a study suggests.

Almost a third of these service members can return to a full-time military job after intensive rehab, the research also shows.

Researchers at the Defence Medical Rehabilitation Centre at Headley Court in Surrey examined survey data on employment for military patients discharged from inpatient rehab programs for brain injuries between 2012 and 2014.

During the study period, an average of 57 patients were discharged from rehab each year.

Researchers were able to contact just under half of these former patients.

Overall, 81 per cent of the study participants were either working or in job training two to three years after leaving rehab, the study team reports in the Journal of the Royal Army Medical Corps.

Meanwhile, 32 per cent of them returned to full-time jobs in the military within this time frame, and 40 per cent had civilian jobs.

The severity of brain injuries didn’t appear to significantly influence the odds of employment, the study also found.

MORE NEWS

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Stroke crisis looming, report finds The UK is sleepwalking into a stroke crisis, with the national population of stroke survivors on track to surge by more than 67 per cent by 2035.

A report from the Stroke Association warns that the number of stroke survivors will pass 2 million by 2035 – up from the current estimate of 1.2 million, if current funding conditions continue.

The study also shows that over 110,000 people could be saved from having a stroke by 2035, if research into the latest stroke prevention procedures was properly funded.

The report on the current, future and avoidable costs of stroke in the UK warns that over the next 20 years, more people every year will be living with stroke, and by

2035 there will be over two million stroke survivors in the UK, with around 700,000 living with longterm disabilities.

The association also claims that a £10m investment into prevention research could change the story and save 114,000 people from having a stroke.

Dominic Brand, director of external affairs at the Stroke Association, said: “The fact is that most strokes are preventable but there’s still a lot we don’t know.

This report highlights some of the key areas that desperately need investment.

“We are currently funding a number of smaller studies focusing on stroke prevention, including blood pressure management, treatments for atrial fibrillation (AF), and the prevention of haemorrhagic stroke.

“The annual number of stroke survivors is expected to increase dramatically by 2035 and the cost to the NHS is set to rise to over £10bn in 2035, from around £3bn,

in 2015. It’s clear that we need to act now to prevent the UK from sleepwalking towards a stroke crisis.”

Currently there are over 1.2 million stroke survivors in the UK, with someone experiencing a stroke every five minutes.

Around 835,000 people in England are known to have AF, which increases a person’s risk of stroke five times.

Yet many patients are on a treatment that is not effectively lowering their stroke risk, and, an estimated 250,000 people are living with undiagnosed AF. Around eight million people have been diagnosed with high blood pressure, which is the biggest controllable risk factor for stroke.

Yet four in ten people are not receiving appropriate treatment to manage their blood pressure, and it’s thought that around five million people are unaware that they have the condition in England alone.

Researchers on the study took into account likely changes to

the population, as well as expert views on potential future trends in the numbers of first-time strokes and survivors after stroke each year when calculating their projections. They also estimated the benefits of investing more funds into stroke research.

Professor Anita Patel, who led the research, said: “Increasing our investment into stroke research will help us turn the tide for people with a higher risk of stroke, allowing us to take steps to prevent the condition more widely. For example, we know that current treatments for high blood pressure do not work for everyone, and are not always used properly.

“More research could help us discover which medication and dosage works best for different people, ensuring we can help prevent more people from having a stroke. This is in turn would help to ease the pressure on already overstretched NHS budgets.”

See p22 for more on the rising stroke threat among young people.

Secrets of the deep revealed

Seaweed could be used as a possible treatment for traumatic brain injuries in future, Australian researchers say.

A study has uncovered marine algae’s potential to help heal damaged brain tissue caused by injury or stroke.

It contains an anti-inflammatory sugar molecule which, when combined with proteins known as short peptides, can be used to create a "hydrogel scaffold".

Researchers at RMIT University and the Australian National University and the Tasmanian biopharmaceutical company Marinova worked on the project.

“The Japanese have long used seaweed for therapeutic purposes and it turns out there is an abundance of similar seaweed in Tasmania,” Dr Richard Williams of RMIT University said.

When a specially engineered hydrogel scaffold was injected into a damaged brain, the scarring was significantly reduced " o half that of a stab (control) injury". The new cells had grown by the seventh day, according to a study published in the journal ACS Biomaterials Science and Engineering.

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Young patients being let down – survey Survey findings suggest the vast majority of young people with neurological conditions in Scotland are receiving care in homes for

Homeless brain injury scheme launched in London A year-long project investigating ways of better supporting homeless people with brain injuries is underway in London.

The initiative aims to explore the issue of brain injury among rough sleepers in the tri-borough area of Westminster, Hammersmith and Fulham and Kensington and Chelsea.

The project is supported by Westminster City Council, coordinated by St Mungo's and carried out with involvement from Change Communication, Headway East London, Great Chapel St Homeless Health Surgery, the Enabling Access Service (EASL) and Homeless Link.

It was launched after the Greater London Authority agreed funding from the Rough Sleeping Innovation Fund in July.

The project aims to provide “awareness training” for 250 staff in the sector and develop a toolkit for frontline workers to use where they suspect brain injury may be a factor in their work. It will also create partnerships between organisations to identify a pathway of support for people affected by brain injury. Support will also be offered to 20 people known or suspected to be affected by brain injury.

At the end of the study next year, a report on

findings and recommendations for the future will be made.

Research shows as many as one in two homeless people have a brain injury. Studies in the UK and North America in recent years have found levels of past TBI experiences among homeless people to generally range between around 45 and 55 per cent.

Research also suggests the vast majority of TBIs happened before homelessness occurred (90 per cent in one study in Leeds in 2012).

Meanwhile, homelessness in general is on the rise. The number of people sleeping rough in England soared by 55 per cent between 2010 and 2015.

In 2016 an estimated 236,000 people were officially homeless in Britain, with 9,100 of those sleeping rough as opposed to being "sofa surfers" or housed in temporary accommodation.

Research by Heriot-Watt University on behalf of the charity Crisis predicts UK homelessness numbers will more than double to 575,000 by 2041 – if factors such as the current lack of affordable housing are not adequately addressed.

See nrtimes.co.uk for an in-depth report on homelessness and brain injury.

the elderly.

A survey, by the charity Sue Ryder Care, shows that 86 per cent of people with neurological conditions in residential care in Scotland are in care homes for older people. It also suggests that one in five of these people are under the age of 65.

Although surveys are rarely a truly accurate measure of a specific field or sector, the report’s findings are being reflected across the UK, believes one expert.

Consultant neurologist Professor Mike Barnes, clinical director at Christchurch Group, says: “Sadly, the results of the survey don’t surprise me and if the same survey was to be carried out in England I imagine the findings would be similar. At the moment there is a grossly inadequate number of beds for people with a neurological condition who need long term care so they are placed into care homes, usually amongst older people.

“There are very few nursing homes that are dedicated to young people with ongoing health care needs which means all too often they will

Nursing collective gathers pace

be placed into care homes with the

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.

who are living dementia.

elderly, perhaps amongst people “The right care support package can maximise independence and recovery, equipping residents with the skills they need to return home or to a supported environment.

"That’s why it’s vital that people with neurological conditions receive the best possible level of care for them and their needs.”

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NRTIMES

15

Mumbai

World congress plans busy programme for Mumbai Neuro technologies which enable cost effective care

paediatric rehabilitation and advances in the

developing world communities.

in the developing world will be a dominant theme at

treatment and understanding of traumatic

“The WFNR has a longstanding tradition of

one of the biggest international neuro-rehab events

brain injuries.

conducting scientific meetings of the highest quality

on the calendar, it has been announced.

The programme has been shaped with involvement

with internationally renowned experts from the

Neuro-rehab professionals from across the

from numerous special interest groups and aims to

fields of both basic and clinical neurosciences and

globe will gather at the 10th World Congress for

“bring out the best practices in neurorehabilitation”.

neurorehabilitation.

Neurorehabilitation in Mumbai next February.

It also features a busy timetable of "meet the prof"

“At WCNR 2018, the interdisciplinary symposia will

The programme, themed “from neuro technologies

sessions, scientific workshops and public forums.

represent the T.E.A.M spirit of ‘Together Everyone

to community care”, will partly focus on advances in

Meanwhile, a keynote talk will be delivered

Achieves More’ to bring out the best practices in

basic neurosciences and in clinical practice which are

by Thomas Carmichael, a neurologist and

neurorehabilitation.

changing the lives of patients and helping them to

neuroscientist at the Geffen School of Medicine

“Come and join us in Mumbai, the financial capital of

re-integrate into society.

at UCLA in the US, entitled: The Molecular

India, a city that never sleeps.”

Experts from neuroscience and neuro-rehab will

Neurorehabilitation - From Smart Mice to

For full programme details and to book a delegate

discuss a range of other topics over four days,

Smarter Human.

place visit www.wcnr2018.in.

spanning issues relevant to neurologists, physicians,

The event, held every two years, is organised by the

physios, OTs, psychologists, therapists, rehab

World Federation for NeuroRehabilitation (WFNR)

engineers and basic neuroscientists amongst others.

and takes place on 7 to 10 February 2018 at The

Sessions will cover a broad range of issues, including

Renaissance Mumbai Convention Centre Hotel.

neuro-infection, robotics, molecular recovery, spinal

Nirmal Surya, president of the event, said: “From

cord injuries, neuromyopathy, rehab in disaster

neuro technologies to community care, the theme

zones, alternative medicines and new science

chosen for this congress, will cover exciting,

impacting on spasticity.

innovative technologies in neurorehabilitation that

Other areas include neuropathic pain management,

offer high quality care at low cost for the

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It aims to bring out the best practices in neuro-rehab and will cover a wide range of topics

COMPANY NEWS sponsored feature

Elysium re-opens neuro centre amid ongoing expansion

The Bridge, North Yorkshire

A neuro-rehab centre which closed last year is to re-open under new ownership.

Elysium Healthcare purchased The Bridge as part of its recent acquisitions of the Badby Group and Stanley House earlier this year.

Located in Middlesbrough, North Yorkshire, The Bridge will be the fourth centre to come under Elysium Neurological’s pathways.

With CQC registration now complete, the centre will open for referrals in late Autumn 2017, once all preparations have been carried out.

The facility will provide neuro-rehab, complex long-term care, respite and palliative care for people with neurological diseases and brain and spinal cord injuries.

It features 40 rooms over four floors, a hydrotherapy suite, spa, gym and numerous therapy rooms with specialist equipment. It also houses a kitchen for residents to receive independent living skills assessments and programmes.

Rooms are all individual, with large ensuite facilities and built-in storage.

Four individual units provide a total of 40 beds which can meet the needs of specific patient groups. Spacious corridors lead to multiple communal areas on each floor, with an accessible lift providing easy

access to all areas.

The Bridge provides excellent opportunities for residents to access the local community as part of their care pathway, due to its location in the heart of Middlesbrough.

The Bridge will offer neurological therapies from its experienced and dedicated therapy team, which works within first-rate facilities and has access to the latest specialist equipment.

Nationally-accredited outcome measures will be utilised to monitor and evaluate resident’s progress through neuro-rehab, including FIM/FAM (Functional Independence Measure/ Functional Assessment Measure).

Monitoring by the clinical team through interdisciplinary team-working and reviews will ensure each resident is central to their recovery pathway and goal-setting.

The Bridge will provide the highest standard of care and rehabilitation, encompassing the physical, psychological, emotional and social needs of all residents.

A range of care and rehabilitation pathways to suit the individual needs of those accessing The Bridge’s specialist services will be offered.

These will include: • Neurological physical and cognitive rehabilitation • Inpatient assessment and treatment • Long term complex care, including specialist nursing • Sensory assessment and complex care for patients with disorders of consciousness Elysium Healthcare CEO Joy Chamberlain said: "We want to work in partnership with local services to complement what they have and provide the services that are in the greatest need."

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

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INTERVIEW

WORLD AWAKENS TO ALLERGY RISK A single bite of a holiday meal on a girl’s trip to Budapest left 26-year-old Amy May Shead fighting for her life and severely brain injured. Despite a legal loophole leaving them with no compensation to pay for her care, her family have rallied round to get Amy on the road to rehab – and educate the world on the link between nut allergies and brain damage.

Julie Martin has just emerged from an intense media blizzard when she speaks to NR Times. It was sparked by her family’s appearance on TV land’s famous This Morning sofa.

“It’s been absolutely crazy and we’ve had an astronomical response with correspondence from all over the world,” she says.

Presenters Eamonn and Ruth were visibly moved as the tragic tale of Julie’s niece, Amy May Shead, was shared with the nation.

Amy used to work behind the scenes on the show as a bright, bubbly young researcher.

Now, severely brain damaged following an anaphylactic shock brought on by peanut allergy, she understands everything but is unable to communicate beyond indications of "yes" and "no".

The credits had barely rolled on the episode before Julie’s phone began glowing white hot with requests from editors and journalists across the globe.

Julie runs the Amy May Trust, which raises funds for Amy’s ongoing care and rehab in the absence of a compensation pay-out, and took hundreds of calls.

Amy’s story was subsequently relayed in every language imaginable by titles as far flung as the China Press, New Zealand Herald and Mexican Milenio.

“The overwhelming response has been one of shock at the severity of nut allergies,” says

Julie. “People didn’t realise it could lead to such circumstances. On the other side of the coin are people with allergies themselves who are incredibly grateful for raising awareness.

This is really important as we genuinely would hate anyone to go through what poor Amy has.”

At 26, Amy flew off for a long weekend in Budapest with her friends in 2014. On the third day she ordered a meal in a restaurant – only after following the strict regime she always did when eating out.

She verbally made staff aware of her potentially fatal nut allergy, she showed them her allergy information card printed in their local language and received several reassurances that the chicken dish she had chosen was entirely free of nut products. With the first bite, however, her throat tightened and she immediately went into major anaphylactic shock, leading to cardiac arrest.

Two doses from the adrenaline auto-injector – or EpiPen – that she always carried with her failed to stop the reaction, although may have kept her alive. For six minutes her brain was starved of oxygen, causing severe brain damage, and she was kept alive on a life support machine.

She spent three weeks in a Budapest hospital in an induced coma, with the depth of the coma increased three times to prevent

further brain damage. Eleven months in intensive care at St Thomas’ Hospital in London followed. She fought severe weight loss, septicaemia twice and the gastrological condition SMA brought on by her brain injury.

In 2015 she was transferred to the Royal Hospital for Neuro-disability in Putney and was later moved to a specialist care facility in Essex. Plans are currently being made for Amy to return to her parents’ home.

Shockingly, public liability insurance is not a legal requirement in Hungary so no compensation was available to fund Amy’s continual rehab, despite a lengthy legal investigation.

“We have nothing but praise for the NHS as a family; they have been incredible and saved Amy’s life. But to allow her to progress, intensive treatment is needed and we have to pay for that and we understand that.”

The result is the Amy May Trust. Parties, runs and even a side-line in mail-order bags of wildflower seeds are among many things that have helped to raise funds so far.

The trust was also gifted free shirt sponsorship at Southend United, Amy’s local football club.

Julie runs the trust with her 24-year-old son Tom. As well as raising funds, it has also been lobbying for rule changes that could protect other people with nut allergies. It launched a petition to ban nuts on airlines, and at the time of writing has almost 299,000

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INTERVIEW

signatures. An airline is effectively an airtight tube. Open a bag of nuts anywhere on the vessel and dust particles are transported throughout, via the ventilation system.

Serious consequences can result for anyone with an allergy.

Amy’s welfare is of course Julie’s primary concern. And her niece’s positive demeanour offers hope of a brighter future.

“One of our happiest memories, which really demonstrated that Amy was aware, came

when she was desperately ill at St Thomas’.

Wonderful World by Louis Armstrong came on the radio. We called this our family song and Amy was barely out of her coma but got upset.

My sister and I hold this memory very dear because it had obviously triggered something in her brain that was familiar to her. It was an incredible moment.”

Julie is adamant that, despite everything the brain injury has taken from Amy, her personality remains perfectly intact.

“Amy was a vivacious, motivated and tenacious character.

"She also worked very hard and had a great sense of humour. She has retained these qualities. She works so hard with her therapists and never admits to being tired; she just wants to keep going.

“She has a huge sense of humour and laughs a lot. She really is happy. She also gets adult humour.”

Stimulation comes partly from a large circle of loyal friends, as well as her devoted family and parents, Roger and Sue.

It triggered something familiar and was an incredible moment

“Her awareness has increased enormously over time and we know that she’s good at remembering things as she often laughs about memories she finds funny. Because her understanding is good, it’s amazing how you can muddle through even if someone can’t verbalise.”

Amy receives intensive physio and speech and language therapy – and has a weekly music therapy session.

“The therapists work intensively with her and she loves every moment of it,” says Julie.

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INTERVIEW

“I think the whole package of family, friends and therapists, and the constant attention that brings, really does help.

“The main therapists are very innovative in their approach and open to suggestions.

We’re definitely keen to keep an open mind and try new things, as long as they are realistic options.”

Currently, Amy’s poor vision means brain computer interfaces, and their associated screens and controls, may not be the best solution to improve her communication.

A specialist in America has been investigating the use of special goggles that may improve her sight. The family have also tried oxygen therapy.

“We will try anything that will realistically help Amy.” A by-product of Amy’s publicity has been a massive surge in awareness of the potentially grave consequences of certain allergies. This comes in an age in which intolerances to dairy,

wheat and other foodstuffs have emerged – perhaps clouding the potentially deadly nature of allergies like Amy’s.

Figures suggest allergies of varying severity are on the rise, although there is no definitive scientific explanation of why.

Some scientists point to a rising trend of selfdiagnosis and misconceptions about allergies and intolerances.

A study this year, meanwhile blamed adventurous middle class diners eating more exotic diets than previous generations.

In the UK, one to two per cent of adults have a food allergy.

This, combined with the estimated five to eight per cent of children with a food allergy, equates to about two million people.

This figure doesn’t include those with food intolerances.

Anaphylaxis-type reactions occur in approximately one in 1000 of the general population, while UK hospital admissions for

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.

anaphylaxis soared by 615 per cent between 1992 and 2012. Peanut or tree nut-triggered anaphylaxis has an estimated prevalence of 0.25 to 0.95 per cent in UK and US populations (Cianferoni, 2012).

Such figures do little to portray how truly severe allergies can be, however.

This is perhaps why Amy’s story so shocked the world, giving people their first real glimpse of the devastating power of certain allergies in certain people.

In all of the noise and confusion that surrounds allergies, hers is a powerful cautionary tale that has made many think differently about a sometimestrivialised issue.

Julie says: “It may be that there is some confusion between mild intolerances and serious allergies.

"The media frenzy of the last few weeks can only be a good thing if it has helped people understand things better.”

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

CONDITION

YOUNG STROKE THREAT RISING Generations X and Y are increasingly being caught in the crosshairs of stroke but the fightback is underway, as NR Times discovers in conversation with expert Liz Iveson.

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Stroke is the last thing that's thought of by doctors and younger patients

Even under the bright lights of A+E, and the fixed stare of the experienced doctor, stroke can go undetected. It hides behind the mask of other problems like migraine, vertigo or drugs and alcohol.

In young people, who are generally considered low risk, this deceit can be devastating. Death or life-changing disabilities can occur – simply because signs were missed by professionals, or patients and the people around them.

Traditionally strokes were considered a disease of the retired. But NHS figures show that the number of men aged 40 to 54 hospitalised after stroke hit 6,221 last year – 46 per cent higher than in 2000. For women in that age group there was a 30 per cent rise to 4,604.

The average age of stroke is 74 for men and 80 for women, with both figures gradually reducing in recent years, despite the UK’s ageing population.

Most strokes do occur over the age of 65, but poor lifestyle choices are putting younger generations increasingly at risk. The situation is exacerbated by the challenges faced in spotting symptoms by both young people themselves, and clinicians.

The push to raise public awareness centres around the FAST acronym (Face, Arms, Speech and Time to call 999).

The Act FAST campaign reportedly contributed to a 54 per cent rise in stroke related 999 calls between 2009 and 2013, leading to around 4,500 fewer people being left disabled by stroke. This saved the taxpayer over £332.9m in the period, against the campaign’s cost of £12.5m, Public Health England said.

Slightly dubiously, it is also claimed that

FAST increased the proportion of the UK population that knows what a stroke is by 20 per cent to 65 per cent. It is unclear how this figure was reached with any accuracy, but the campaign’s overriding success is unquestionable.

Would a similar campaign specifically targeting young people be able to deliver such results in the under 40s? Certainly, finding the millions of pounds needed to push it out across the spectrum of social media sites and TV platforms would be a struggle.

Expert Liz Iveson believes a better use of resources would be to promote stroke recognition in young people among doctors in GP surgeries and on A+E wards.

The stroke consultant, who works at York NHS Teaching Hospital and Woodlands Neurological Rehabilitation Centre, says: “Often, because of the age of the patient, doctors don’t think about stroke diagnosis until they have ruled everything else out. They may not be showing the classic symptoms, while conditions far more common in young people than stroke, like migraine or vertigo, are higher up the check-list.

“Stroke tends to be the thing that’s thought of last by both doctors and younger patients. As a result, we see delayed presentation and diagnosis.”

Stress and alcoholism are also red herrings that might detract from a correct stroke diagnosis in young people.

Strokes which are ischaemic (due to a blocked blood vessel rather than bleeding on the brain) and occur towards the back of the brain are particularly hard to diagnose in young people.

Early diagnosis of posterior circulation

ischaemic strokes may prevent disability and save lives; but the FAST test is less useful in detecting them, while symptoms like vision problems and vertigo can easily be confused with other less serious problems.

The vast majority (85 per cent) of strokes are ischaemic. Given the life-changing damage they can cause to the brain, treatment must be carried out within a few hours if serious consequences are to be avoided.

Misdiagnosis or delayed presentation puts young people’s lives at risk or sets them up for a lifetime of severe disability.

One treatment, thrombolysis, uses drugs to break down and disperse the clot. It is only licenced for use up to four and a half hours from the onset of stroke symptoms.

Thrombectomy – a procedure which mechanically pulls the blood clot out of the brain – must also take place in the early hours after a stroke.

Every minute a stroke is untreated, 1.9 million neurons are lost. When thrombolysis is given within three hours of stroke, one in 10 patients will go on to live independently.

The speed at which patients are diagnosed and possibly taken to theatre or given drugs can be hugely significant to the outcome of a stroke.

Iveson believes the emergence of the national ‘stroke pathway’ is helping to counter the threat of late detection or misdiagnosis of stroke among young people.

Over the last decade, the Royal College of Physicians (RCP) has driven the national rollout of a clear pathway for stroke patients within healthcare trusts. Its regularly-updated National Clinical Guideline for Stroke states that: “Commissioning organisations should ensure their commissioning portfolio encompasses the whole stroke pathway, from prevention through acute care, early rehabilitation and initiation of secondary prevention on to palliation, later

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Obesity and high blood pressure are being diagnosed at a younger age and arteries are ageing earlier

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rehabilitation in the community and long-term support.”

Before this guidance was first introduced in 2008, stroke care was inconsistent across the UK, with patients being treated in a range of settings rather than on dedicated stroke wards.

Iveson says: “We’re definitely getting better at diagnosing stroke. Because of the pathway, the stroke team has a greater presence in A+E. If doctors are unsure about symptoms, they can ask the stroke nurse to have a look at a patient.

"The pathway is pretty consistent across the country, and is supported by the ongoing

audit of stroke services.

“Through the pathway, we also give feedback when stroke diagnosis has been missed, which also ensures lessons are learned.”

Improving diagnosis will only go so far in curbing the number of young lives damaged or devastated by stroke, however.

A more challenging task is snuffing out the stroke risk factors seemingly on the rise in younger people.

“Obesity and high blood pressure are being diagnosed at a younger and younger age and therefore arteries are ageing earlier than they otherwise would have. The longer you

CONDITION

have these risk factors, the more likely you are to have a stroke.”

Being overweight increases the risk of high blood pressure, heart disease and type 2 diabetes; all of which are stroke risk factors.

Overall, obesity increases a person’s risk of stroke by 64 per cent, says The Stroke Association.

Meanwhile, British Heart Foundation (BHF) figures show that five million people in England are unaware they have high blood pressure, and therefore could be at risk of stroke.

The western world’s obesity epidemic shows no signs of slowing, and young people are just as exposed as older generations.

Around a third of UK children are reportedly overweight when they leave primary school.

More alarmingly, signs of obesity-related

heart damage are now being detected in toddlers. A study of more than 400 children in Romania found changes in the structure of the heart in obese infants - including those below the age of one.

The results, presented at the European Society of Cardiology congress in Barcelona, found obese children had 30 per cent thicker heart muscle compared to those of a healthy weight.

Stroke in children is usually linked to genetics rather than other risk factors. But such reports, and the fact that overweight

children are statistically more likely to be obese as adults, offer little encouragement in the push to reduce stroke in young people.

Stress is another rising risk factor.

“Stress alone increases stroke risk,” says Iveson, “partly because it can lead to changes in lifestyle that increase other risk factors like high blood pressure and obesity.

"For example, if you’re working long hours, you might do less exercise, smoke more and eat junk food on the go. There is also a more direct link between stress and stroke,

If you're working long hours, you might do less exercise, smoke more and eat junk food on the go

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

The Newton Unit at the ABI Centre

Find us on social media

The Newton provides support and rehabilitation for individuals with an ABI detained under the Mental Health Act.

The client’s individual needs are continuously assessed by their responsible clinician, including a weekly multi-disciplinary team meeting. This includes a formal risk assessment and transdisciplinary evaluation to ensure the clients have access to a The Newton is a locked range of vocational, social and leisure services across the TRU network including rehabilitation unit with 8 bedrooms external outings when agreed, ensuring person centred quality of life support. and 1 bungalow. Clients have access Clients are supported to have a graded access to TRU’s rehabilitation pathways and to 24hr support from support coaches in addition to registered services for active rehabilitation and community integration including management mental health nurses. of Community Treatment Orders during this process.

member of

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related to inflammatory markers.”

This link was only proven earlier this year, by researchers at Harvard Medical School and Massachusetts General Hospital.

The part of the brain linked to stress, the amygdala, controls the production of white blood cells by bone marrow to fight infection and repair damage. Its function is to prepare the body for a harmful experience, such as being attacked.

Scientists discovered, however, that chronic stress can cause this process to go into overdrive. White blood cells are over-produced and can form plaques in the arteries, heightening the risk of cardiovascular diseases such as stroke.

Although definitive evidence that stress levels in young people are on the rise is lacking, numerous studies suggest a general surge in work-related strife.

Longer working hours, tighter budgets that encourage bosses to "sweat their assets" and the culture of emails on the go, all contribute.

The uncertainty that comes with zero hours’ employment and working in the so-called "gig economy" is also linked with increased stress in younger workers.

Drug use is also a stroke risk factor which may be more prevalent in the under-40s.

Iveson says: “I once saw a 24-year-old who came to hospital following a stroke which was put down to his heavy cocaine use that had effectively aged his blood vessels prematurely.”

A 2012 study found that 20 per cent of stroke patients aged 45 or under had used illegal drugs. More recently, researchers discovered links between methamphetamine – also known as speed, ice or meth - and increased stroke risk.

Clearly raising awareness of the many risk factors of stroke in young people, and continuing to improve diagnosis, are mammoth tasks requiring years of effort and focus.

Evidence suggests that post-stroke treatment must also improve, if stroke patients are indeed getting younger.

The 2016 edition of the National Clinical Guideline for Stroke reports that some

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A 24-year-old had a stroke due to heavy cocaine use that aged his blood vessels prematurely younger adults feel that general stroke services – used mostly by older people – do not meet their needs.

It reports: “Younger adults are more likely to have an unusual cause for their stroke, rehabilitation may require specific attention to work and bringing up children, and social needs and expectations may be different.

“Thus, although all stroke services should respond to the particular needs of each individual regardless of age or other factors, it is appropriate to draw attention to this group of younger people with stroke.”

It recommends that acute stroke services should “recognise and manage the particular physical, psychological and social needs of younger people with stroke”.

It also says they must liaise with regional neuro-rehab services specialising in young adult care.

Encouragingly, the latest results of the Sentinel Stroke National Audit Programme (SSNAP), which measures stroke care standards and is informed by the National Clinical Guideline, shows general signs of improvement.

In the year to March 2017, 36 teams achieved an overall "A" score, indicating world class stroke service. This was up from 25 in 2016.

Improvements were noted in areas such as rapid scanning, thrombolysis provision, and access to stroke units. It also cited an “unacceptable variation” in standards across the country, however.

A major concern for Iveson is the scarcity of neuropsychology services for younger stroke patients within the NHS. “Psychology is completely underfunded at the moment. A lot of younger stroke patients do well in terms of physical recovery but it's very difficult to address challenges like memory problems or other cognitive issues. They would really benefit from detailed neuropsychology that could

perhaps prove they can return to work or at least help them to function better.

"But they just can’t get it on the NHS and have to apply for funding for exceptional treatment to access it through private providers.”

In fact, getting access to any neuro-rehab services in the long term is needlessly tough for younger stroke survivors, Iveson says.

“In younger patients, the rest of the brain tends to be in good condition and can take over some of the functions that were controlled in the part that has died, through neuroplasticity.

"With the right rehabilitation, young stroke patients can do surprisingly well.

I’ve had younger patients that have had very severe strokes resulting in a lot of brain damage, that have gone on to walk and recover speech.

“Rehabilitation is available for a reasonable time in the NHS but it’s really hard to get it for the prolonged period that many young people could benefit from.

"Unfortunately, long term support isn’t commissioned well at all. Yet younger people who’ve had a stroke may have many years ahead of them and require long-term support to help them in society, at work and in relationships.”

Having worked in the stroke field for over a decade, Iveson has seen great strides in the overall standard of care available to stroke survivors. She also sees significant room for improvement.

“Stroke care has improved massively in the last 10 years but, until recently, resources have largely been concentrated on the beginning part of the patient journey, getting people into hospital as quickly as possible.

"What hasn’t been well funded is what happens after hospital when patients go back out into the community. That’s something that needs attention.”

COMMENT

END AGE BIAS TO SAVE YOUNG LIVES Stroke survivor Kate Allatt on the steps needed to better protect younger people from misdiagnosis.

Amanda Ferguson, 45, was suspected of taking drugs in the emergency room. Jesse North, meanwhile, was initially diagnosed with vertigo but, like Amanda, was also suffering with an early onset brainstem stroke. He was 25.

With 20-year-old model Kati, a clinical assessment pointed to either drugs or epilepsy. In the 20 years since, she has lived with long-term Locked-In Syndrome.

Pre-judgements can be catastrophic, especially when it comes to stroke.

Rachel Capps was a bit of an enigma when she presented with her symptoms to A+E staff, so they gave her a shot of adrenalin and, by doing so, inadvertently sped up a fullblown and devastating stroke.

Brin Helliwell, 47, had a bike accident so his shoulder was treated and stitched before he was discharged as fit and healthy.

Eight hours later, he survived a massive right hemispshere aeschaemic stroke.

Linda Jones said her son (37) "made several trips to his doctor and the emergency room but no one suggested his were early onset stroke symptoms until after he had had the stroke".

My own story started with a catastrophic misdiagnosis by a junior doctor in A+E on 7 February 2010. I presented with slurring and the most piercing headache. I had a severe pain in the base of my head and was unable to look at light. I was 39, an obsessive fell runner, business owner and married mother of three dependent children.

Clearly, my stress diagnosis seemed reasonable didn’t it? I wasn’t offered a CT or MRI scan.

My blood pressure was in normal range, though very high indeed for a very fit runner.

The doctor told me to "go home to rest and take some cocodamol". This was despite having never had a migraine in my life. Five hours later, I collapsed at my home, half an hour away from hospital, with a right vertebral artery dissection, occlusion and infarction and required months of hospital rehabilitation, followed by years of my private convalescence.

I could go on and on with case studies from stroke survivors whose misdiagnoses include complex migraine, vertigo, dizziness, doublevision, stress, being drunk or on drugs, food poisoning, epilepsy, pinched nerves and meningitis. But what about potential solutions to the problem?

I have my own opinions on how to reduce early onset young stroke misdiagnosis in emergency departments too.

I also accept stroke is tricky to diagnose, however.

Firstly, could we have an independent

systematic review of younger stroke survivor case studies? We stroke campaigners often feel fobbed off that our many anecdotal stories are not admissible, yet there is a lack of evidence-based research of case studies.

Secondly, what about making MRI testing/ results available 24/7 in A+E for patients who present with persistent headaches which haven’t abated with paracetamol but have lasted more than 72 hours?

Also, A+E doctors should perform intraarterial thrombolysis (t-PA) treatments within the first three hours of stroke symptoms in the emergency room or ambulance.

Furthermore, there still appears to be a clinical stroke age bias which discriminates against young people in A+E. Anyone with a brain can have a stroke. The F.A.S.T. stroke awareness tool works well for the public, but it’s far too simple as a clinical diagnostic tool in A+E. I believe the ROSIER assessment tool was also age-biased, so I came up with my own acronym which I think would be more accurate in a clinical setting.

B.Y.E.F.A.S.T or Balance, eYesight, hEadache, Face, Arm, Slurring and Time (to call 999) would be more thorough.

Instead of using hospital posters to raise awareness with hospital staff, I would suggest exploiting social media channels - where clinicians actually hang out - to spread this message to frontline medical professionals.

Tweetchats, forums, Facebook groups and Linkedin professional networks could all be used to raise clinical awareness.

We are generally poor at exploiting social media to reduce health costs and improve outcomes. Let's address that while stopping more young lives being ruined by stroke misdiagnosis.

Kate Allatt suffered a severe brain stem stroke at 39 and locked-in syndrome (LIS) as a result.

She has since battled back to independence, recovering her speech and the ability to walk and has a best-selling memoir under her belt.

She campaigns for greater awareness of stroke symptoms in young people and supports LIS patients around world.

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FINDING THE MEANING OF LIFE Kingly Care Partnership provides transitional to long-term residential care and rehabilitation for adults with acquired brain injury and neurological disabilities. Here clinical director Lynne Barnett shares the journey of Kay, who overcame deep-rooted fear and debilitating challenges to achieve remarkable progress at the group’s flagship home, Kingly House.

Kay, 55, has progressive multiple sclerosis. She was referred to the Kingly Care Partnership for assessment after being bed-bound for 18 months amid a deteriorating neurological condition. Her case was further complicated by a fear of hoisting.

Previously she fell from a hoist and fractured her hip, which later calcified. Participation in any activity was limited and care needs had to be met within the confines of her bed space. Communication deficits also made her memory and perception of reality difficult to determine.

Before diagnosis Kay was a social worker. She was known as a vibrant, creative, eccentric, independent person who loved life, her family, children and dogs. This description was in stark contrast to the Kay referred to us.

She half lay, half sat in a braced position, evident through white knuckles gripping the cot sides. She was strikingly fearful at the mere suggestion of any physical interaction. Communication was

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driven by fear and anxiety, hindering the cognitive process required for meaningful conversation.

Contractures, tone and abnormally rotated and displaced joints caused a contorted, mermaid-like body position. Opposing joint rotation impacted profoundly on her range of movement and use of upper limbs.

Her entwined legs, locked together and deeply indented by a cumbersome knee brace, inhibited effective care provision. Meeting basic needs and conducting functional activities was extremely difficult. Carers were needed to manage Kay’s hygiene, incontinence, pressure areas and nutrition. These tasks were critically compromised by her pathological fear of physical interaction.

Limiting interactions to protect her mental health and minimise anxiety contributed to a deterioration in Kay’s physical health.

Nutrition, skin integrity and pain management were all affected, while infection risk increased.

When Kay arrived at Kingly Care Partnership our remit was to consider if any physical remediation could be achieved to better meet her physical and mental health needs.

Our approach was underpinned by our two core principals; achieving quality of life and treating clients as individuals.

Neurological conditions can dramatically impact on an individual’s quality of life. Carers, clinicians and medical professionals charged with addressing this often apply a one-size-fits-all approach. Time allocation can also be limited. Therefore, the true identity of the individual and their right to steer their own care and rehabilitation can be overlooked.

Kay’s rehabilitation at Kingly House started with a focus on detaching the psychological link between interventions and people.

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The rehabilitation team, led by experienced neuro-occupational therapists, began a graded program, addressing Kay’s fear through gentle desensitisation. Momentary visits from smiling faces were gradually replaced by brief verbal greetings, then longer conversations, reading books and gradually, non-invasive and low threat interventions, such as offering drinks through a straw.

Then came the progressive desensitisation of physical touch through enjoyable and meaningful activities, including nail painting and foot massage. Kay’s love of dogs was also used to spark interest, embed trust and promote reciprocal interactions, through the regular visits of Kobi, a Golden Retriever.

Kay’s general anxiety gradually reduced. Our team enjoyed more and more meaningful and reciprocal conversations and smiles – and the emergence of the real Kay. Her dry sense of humour, acute observations and determination to live a fulfilling life came to the fore.

Boundaries to interactions began to recede and Kay became more accepting of assistance, nutrition and drinks. She gained weight and surged out of the "at risk" category. She engaged socially and accepted a TV and radio in her room, which further stimulated and desensitised her.

Steady progress followed, with growing tolerance to personal care and repositioning interventions. Meanwhile, her skin integrity improved and her long-standing pressure areas completely healed.

Next came Kay’s first goal. Goals motivate and provide the determination to overcome challenges. They are an important part of rehabilitation but, at Kingly, must be meaningful to the individual.

Meaning gives goals power, makes them unique to the individual and worth fighting for.

Unexpectedly, Kay declared: “I haven’t seen outside forever. I want to go outside.” Although a basic human need, this seemed a distant dream to Kay; but it proved a powerful motivator to her and the rehabilitation team. Achieving it meant solving body position and alignment problems. She would need to maintain a safe seated position. Hoisting, obtaining suitable seating and a wheelchair were also required.

Her acceptance of others allowed the neuro occupational therapy team to introduce external professionals. A large team formed to help Kay achieve her goal. It included neuro-OTs, physiotherapists, a district nurse, specialist seating clinician and assessor, specialist positioning clinician, MS nurse, psychiatrist, wheelchair services OT and a GP. A methodical approach over several months was taken. A specialist sleep system to remediate and normalise Kay’s body position, reduce pressure areas and aid comfort and pain management was obtained. This gradually improved her natural body position, both in promoting alignment and enabling an improved range of movement.

It allowed her to use both upper limbs bilaterally for functions such as drinking and putting on lipstick. A specialist seating assessment and trial of suitable chairs were also arranged; but firstly, Kay had to be confident in being hoisted. This challenge was tackled with a compassionate approach, graded to incrementally build confidence

and trust. The first successful transfer by hoist was celebrated with Kay’s much-loved new friend, Kobi.

Kay has since progressed far beyond simply seeing outside. She is now routinely out and about; visiting friends and family, shopping in town or just enjoying the sun in the garden and company of fellow residents. She has enjoyed a Christmas party and family wedding, and is a valued member of her community and social environment once more.

Kay’s success is the result of complex and intensive rehabilitation, conducted seamlessly, quietly and diligently, across multiple agencies and clinical professions.

Her outcome is built on a passionate appreciation of fundamental, but basic, values. These include giving time, having patience, really caring and not being afraid to focus on the small things which have the most meaning. These are the foundations of Kay’s progress, which enabled her to regain choice and autonomy and fight for her right to quality and meaning of life.

About Kingly Care Partnership

Kingly Care Partnership operates four facilities and is rated ‘outstanding’ by the CQC. They cover Kingly House (17 beds), Kingly Lodge (5 beds) and Kingly Croft (6 beds) in Hinckley, Leicestershire, and Kingly Terrace (8 beds), in Rushden, Northamptonshire.

The group specialises in obliquely embedding therapy into everyday activities and delivering rehabilitation programmes which are driven by client needs and wishes but tailored to ensure individual suitability.

The aim of all interventions is to maximise and maintain independent potential and wellbeing. Care and support packages are delivered seamlessly, in a ‘home from home’ environment in which institutionalised barriers are removed and normalised living is encouraged.

For referrals contact 01455 613823, email lynnebarnett@kinglycarepartnership.com or visit www.kinglycarepartnership.com.

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INSIGHT

KNOWING WHEN TO LET GO

A judge has provided much-needed clarity on lifeand-death decisions about permanently vegetative and minimally conscious patients. While the ruling could alleviate some of the distress felt by loved ones – and remove needless complexities – more progress is needed, says expert Professor Celia Kitzinger in a special report for NR Times.

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A landmark judgment in the Court of Protection recently found that artificial nutrition and hydration can be withdrawn from patients in permanent vegetative states and minimally conscious states without requiring court approval.

It’s a judgment that “made my day”, says Jean Simpson who describes what happened to her daughter once the Court of Protection was involved as a “distressing fiasco”.

Jean’s daughter, 38-year-old Jodie Simpson, collapsed at her home in August 2012.

She had been on a 'weekend bender' and overdosed. Her brother found her unconscious and called an ambulance. After being treated in hospital for 10 weeks, it was clear that she had suffered irreversible brain damage.

INSIGHT

Jodie never regained consciousness.

Jodie’s situation was a tragedy; but for her mother, a retired nurse, the situation was made much worse by what followed. Although she was permanently unconscious, Jodie was given medical treatments to maintain her body for nearly four years. Only after the court authorised treatment withdrawal in May 2016 (Cumbria NHS Clinical Commissioning Group v Miss S and Ors [2016] EWCOP 32) was Jodie finally ‘set free’ on 4 June 2016.

For years, despite the treating clinicians agreeing with Jean that it was not in Jodie’s best interests for treatment to be continued, she battled with misinformation about what was required for the court application, failures of advance planning and inexplicable legal delays.

Doctors and lawyers floundered around in an area of medico-legal practice made unnecessarily complex by the belief that cases like Jodie’s must be referred to the Court of Protection. The final straw came when, despite the best efforts of the judges involved to expedite the ruling, the Official Solicitor decided to instruct another (third) expert who insisted on further diagnostic tests. These merely reconfirmed what the other two experts had said all along - that Jodie was in a vegetative state. Unfortunately, Jodie’s story is all too common.

Nobody knows exactly how many vegetative patients are maintained longterm in UK care homes, but estimates suggest somewhere upwards of 4,000.

There are approximately 12,000 minimally conscious patients. Only around 100

applications for treatment-withdrawal from these patients have been heard by the courts in the last 25 years. Most are simply given treatment indefinitely. There are many reasons why futile and unwanted treatment continues to be delivered, but one is that the court acts as an obstacle and deterrent. As Mr Justice Jackson said in his recent landmark judgment: “A mandatory litigation requirement may deflect clinicians and families from making true best interests decisions and in some cases lead to inappropriate treatment continuing by default.” (M v A Hospital [2017] EWCOP19) My sister Jenny and I founded the Coma and Disorders of Consciousness Research Centre (CDOC) in 2009 after our other sister, Polly, suffered a catastrophic brain injury in a car accident.

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INSIGHT

It has since interviewed 85 people on their experiences of having a relative in a vegetative or minimally conscious state.

We’ve also supported more than a dozen families, including Jean Simpson, on their journey through the court system – from the process of assembling evidence of diagnosis and the patient’s wishes, to the court hearings, through the treatmentwithdrawal process, and up to and beyond the subsequent death of their relative. We’ve witnessed at first-hand how painful, messy, protracted, expensive and unnecessary this litigation can be – and the harm it can cause to patients, families and carers.

The only medical treatment routinely provided for vegetative and minimally conscious patients is artificial nutrition and hydration. Withdrawing it will definitely be followed by death. Many people we interviewed said they found the idea of withdrawing a feeding tube particularly distressing. Some said it was “cruel”, “barbaric”, or “you wouldn’t do it to a dog”.

The symbolic power of feeding, together with the requirement for a court application to withdraw a feeding tube, explains why so many of these patients are maintained for so long.

Law and practice The first time an English court considered withdrawing a feeding tube from someone in a vegetative state was in the early 1990s in the aftermath of the Hillsborough disaster.

Tony Bland was an 18-year-old Liverpool supporter caught up in the crush. He suffered broken ribs and punctured lungs which interrupted the oxygen supply to his brain. He survived with severe brain damage in a vegetative state.

Convinced that their son would not want to continue to be maintained in this condition, his parents supported a series of court

DATE FOR YOUR DIARY

Often these patients are simply lost in the system, discharged into long-term care homes hearings. They battled all the way to what is now known as the Supreme Court – seeking to allow doctors to withdraw artificial nutrition and hydration without fear of being prosecuted for murder. The judges decided that withdrawal was lawful, but it was also agreed that “until a body of experience and practice has been built up”, future cases should be heard by the courts (Lord Keith, Airedale NHS Trust v Bland [1993] AC 789).

Until recently it has been widely believed that this part of the ruling still applies to withdrawal of feeding tubes from patients in the vegetative – and now also in the minimally conscious – state. Even when families and doctors are all in agreement, as in the case of Jodie Simpson, cases have still been referred to the court, causing enormous expense as well as delay.

It was eight months after Jodie’s collapse, in April 2013, that Jean wrote to the doctors asking if her daughter could be allowed to “pass away with peace and dignity”.

But treatment wasn’t withdrawn for another three years and two months, during which Jodie received medical treatment that was futile, unwanted and not in her best interests.

Jean recalls: “It was absolute torture to see what was being done to Jodie on a daily basis.

The children visited less and less - they could no longer face seeing their mum like that.

First the medical side was dithering and then the solicitors joined in. It was quite different from other end-of-life cases I’d seen as a nurse. It was as if they were scared of the legalities involved.”

Unlike her last years in the nursing home, Jodie’s death in the hospice was peaceful.

Professor Celia Kitzinger is delivering a seminar to discuss the implications of the judgment in M v A Hospital in Newcastle upon Tyne on Thursday, October 26 at 6pm. The event, which is free to attend, will be held at law firm Sintons, The Cube, Barrack Road, NE4 6DB. To book a place, contact peter.jennings@sintons.co.uk.

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All the families who’ve described their loved ones passing away after court-authorised withdrawal of a feeding tube have told us it was a good death for the patient, despite the ‘burden of witness’ they faced.

In making his landmark judgment, Judge Jackson based his decision on the law as set out in the Mental Capacity Act 2005. He pointed out that if doctors make decisions, including treatment withdrawal decisions, “in the best interests” of incapacitated patients they are protected against liability by section 5 of the Act, so do not require the additional security of a declaration from the court. He also drew on the Supreme Court decision in Aintree which clarified that: “The fundamental question is whether it is in the patient’s best interests, and therefore lawful, to give the treatment, not whether it is lawful to withhold it.” (Lady Hale in Aintree University Hospitals NHS Foundation Trust v James [2013]).

It is very common for life-prolonging treatments – including feeding tubes - to be withdrawn in emergency rooms, care homes and hospices across the country when these treatments are futile, burdensome, unwanted or not in the patient’s best interests. A judge in every healthcare unit would be needed if judicial approval were required for all these decisions.

Of course, court hearings are not expected as a matter of routine, and there is no good reason for patients in vegetative or minimally conscious states to be singled out for special judicial scrutiny. The court is always available where there is disagreement or where it is felt that, for some other reason, an application should be made. In the judge’s view, however, this “will only arise in rare cases”.

Despite the new judgment, lawyers are likely to remain cautious about advising doctors to withdraw treatment from this group of patients without applying to court. Advice is currently contradictory. Many formal guidelines and other documents with legal

INSIGHT ONLINE:: Find this report on nrtimes.co.uk for links to further reading on the issues covered in the feature and to watch video interviews with families of people in vegetative and minimally conscious states.

standing still advise that a court application is necessary. Crucially, the Ministry of Justice has not yet withdrawn its claim that such cases should go to court (as stated in Court of Protection Practice Direction 9E).

A decision was made in July to recommend removing this practice direction, and it is very likely be deleted by the end of this year. Clear and consistent guidance is needed to give clinicians certainty about where they stand in respect of giving or withholding treatment.

Abolishing the expectation that cases should go to court will help to ensure that patients’ best interests are considered sooner and that futile and unwanted treatment is withdrawn without delay but it will not solve all the problems.

Improving care The CDOC convened a working party composed of clinicians, lawyers, researchers and policy makers, to explore concerns about current treatment of vegetative and minimally conscious patients, and consider how best to improve care.

Often these patients are simply lost in the system, discharged into long-term care homes where they may receive excellent physical care but without any consideration of long-term goals of treatment. We need a national register so that they don't simply fall off the radar.

Early diagnoses received from recognised centres of excellence often ‘stick’ to patients years later, even though their level of consciousness may by then have increased or decreased. We need a system in place for periodic reassessment of their clinical situation.

In the first few years after brain injury, a patient’s family often believes their loved one is a fighter and would want all available treatment. This belief continues to govern decisions many years later, long after families have lost hope for recovery.

We need to review treatment decisions more regularly with families and perhaps adopt time-limited treatment trials which necessitate review at a fixed time.

Questions about whether tube feeding is in

the patient’s best interests are rarely raised, leaving many families wrongly believing that artificial nutrition and hydration is a form of basic care which cannot be withdrawn. This treatment, like any other, should routinely be included in best interests decision-making.

The law makes a clear distinction between euthanasia - an act of deliberate killing, such as injecting someone with a lethal drug with the intention of causing death – and treatment-withdrawal. Yet not every clinician recognises or agrees with this distinction. I recently attended a best interests meeting at which two consultants refused even to consider withdrawing a feeding tube from a profoundly braininjured patient who was showing signs of improvement.

Despite acknowledging that recovery to a quality of life he’d have considered worthwhile was unlikely, and despite the strong views of his wife and daughters that he would refuse treatment if he could, the consultants described treatment withdrawal as “unethical”.

We need guidelines for clinicians with conscientious objections to treatment withdrawal that ensure they pass patients on to the care of others, if their own values preclude certain options.

The pervasive problem is that these patients are given treatments, especially artificial nutrition and hydration, that is not in their best interests. Senior clinician Professor Derick Wade proposed earlier this year that commissioners – the funders and purchasers of treatment – should pay providers only if treatment is documented as being in the patient’s best interests in accordance with the law. Using the economics of healthcare to ensure legal compliance could transform treatment decision-making.

Solving such problems requires a change in the culture of long-term care for vegetative and minimally conscious patients. The British Medical Association, the Royal College of Physicians and other stakeholders have been invited by the Court of Protection to consult widely about what is needed to ensure the best care for this

vulnerable patient group and to issue new guidelines.

For Jean Simpson, “it is a comfort to know that our experience has made a small contribution to changes that will ease the emotional burden a little for families in the future who end up in this devastating situation”.

Professor Celia Kitzinger is co-founder and co-director of the Coma and Disorders of Consciousness Research Centre (cdoc.co.uk) alongside her sister, Professor Jenny Kitzinger of Cardiff University. The multi-disciplinary research centre has published numerous articles and contributed evidence to the Law Commission and House of Lords Select Committee on the Mental Capacity Act. Follow Celia on Twitter: @KitzingerCelia

Learn more about prolonged disorders of consciousness A new multi-media learning resource about prolonged disorders of consciousness is now available online.

It was designed primarily for allied health professionals and their students, but also offers valuable insights for a wide range of other staff.

The resource includes presentations and video discussions with staff and patients’ families, as well as selfassessment quizzes and reflective activities for interactive learning.

Topics covered include: • Defining the vegetative and minimally conscious state • Core allied health professional interventions • Staff-family communication • Cultural representation of ‘coma’ • Navigating ethical and legal issues – including the implications of recent court judgments.

The undergraduate version is available now, with the staff version being launched in December. Both are freely available to individuals and organisations at www.cdoc.org.uk/training

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RESEARCH

TIME FOR A Researchers in America have raised new hope about brain injury recovery beyond the so-called "twoyear recovery window".

Their study has also found a more precise way of measuring rehab results, as NR Times reports.

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CHANGE?

Written into neuro-rehab lore long ago is the belief that brain injuries have a two-year recovery window.

What isn’t achieved within 24 months, may never be achieved, so the old legend goes.

On one side of the argument is a longseated view based on our basic scientific understanding of the brain.

On the other are the many inspiring recoveries achieved by brain injury patients around the world beyond two years.

In America, the fabled two-year window still divides opinion, says Dr Kihwan Han, a research scientist at the Center for Brain Health at the University of Texas in Dallas.

He believes it has never been definitively

challenged by science because of a gap in focus.

“The neuroscience community are doing research into the acute stage of brain injury and believe it is hard for the brain to recover.

Neuro-rehab people are more focused on outcomes and how people can do better, however.

"There has been a lack of interest in identifying changes to the brain and quantitatively measuring the ongoing impact of treatment on the brain itself.”

A new study headed up by Dr Han gives neuroscientists the numbers they need to believe in long-term brain injury recovery.

It shows that certain types of brain training

RESEARCH

The findings offer a way of quantitatively measuring the power of neuro-rehab.

can cause structural changes in the brain and new neural connections several years after a traumatic brain injury (TBI).

Both cortical thickness and neural network connectivity can increase as a result of instructor-led training.

The findings offer a way of quantifying the power of neuro-rehab treatment that has not previously been explored.

Han, whose research was published in the Brain and Behavior journal, says: "A TBI disrupts brain structure. These brain changes can interfere with brain network communication and the cognitive functions that those networks support.

"For people with chronic TBI, they may have trouble with daily tasks such as creating shopping lists or resolving conflicts with others, for many years after the injury.

These findings provide hope for people who thought, 'this is as good as my recovery is going to get' and for the medical community who have yet to find a way to objectively measure a patient's recovery.”

The study included 60 adults with TBI symptoms lasting an average of eight years.

They were randomly placed into one of two cognitive training groups; strategy-based training or knowledge-based training.

Over an eight-week period, the strategybased training group learned strategies to improve attention and reasoning.

The knowledge-based training group learned information about the structure and function of the brain as well as the effects of sleep and exercise on brain performance.

Magnetic resonance imaging measured cortical thickness and resting-state functional connectivity (rsFC) before training, after training and three months post-training.

Previous studies have shown that cortical thickness and rsFC can be potential markers for training-induced brain changes.

Individuals in the strategy-based reasoning training showed a greater change in cortical thickness and connectivity compared to individuals who received the knowledgebased training.

Han says: “Strategy is an effective way of improving thought processes.

"It helps people to organise their thoughts to achieve certain tasks.

"Our study shows how different types of training can affect the brain in different ways, but it doesn’t necessarily mean knowledge-based training has no purpose.

We identified changes to the brain with knowledge training too, but strategy made more of a difference.”

Changes in cortical thickness and functional connectivity also correlated to an individual's ability to switch between tasks quickly and consistently to achieve a specific goal.

“The range of cortical thickness change was really tight, at about half a millimetre, but the range of improvement to people’s performance was significant,” says Han. "People who showed the greatest change in cortical thickness and connectivity,

showed the greatest performance increases in cognitive tasks. Perhaps future studies could investigate the added benefit of brain stimulation treatments in combination with cognitive training for individuals with chronic TBI who experience problems with attention, memory or executive functions.”

Han believes being able to quantify the power of treatment on the brain could challenge approaches to neuro-rehab in the future.

“Rehab professionals have often wondered why we [scientists] care about the brain changing through training.

"Conventional manuals report on less precise ways of measuring treatment efficacy. But these findings mean we could optimise the impact of training on patients [by measuring it scientifically].”

According to the UK Acquired Brain Injury Forum (UKABIF), the two-year recovery window cannot simply be dismissed as a myth.

Most significant improvements after brain injury do occur within the first 24 months.

But UKABIF estimates that around a third of brain injury patients continue to improve after the initial two years.

Han’s study presents an interesting way of quantifying the results of rehab and offers hope to people living with the effects of an historic brain injury.

From a neuro-rehab perspective, however, it raises several unanswered questions. Among them is how instructor-led training could be delivered to people that might have ended their rehab journey several years ago?

Also, would such treatment deliver the meaningful and practical improvements needed to justify its cost and resources?

Hopefully further studies will build on the promising progress Han has made so far.

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RESEARCH

Training didn't induce any changes in brain activity or decision making

Brain training –

silver bullet or fool’s gold?

likelihood of impulsive behaviour.”

The researchers recruited two groups, each with 64 healthy young adults. One group was asked to follow the Lumosity regimen, performing the executive function games for 30 minutes a day, five days a week for 10 r Kihwan Han’s study shows tangible weeks. The other group followed the same proof that brain training works – if schedule but played online video games delivered by a professional instructor. instead. Both groups were told that the study Self-administered brain training, however, is was investigating whether playing online video struggling to conclusively prove its worth. games improves cognition and changes one’s The concept of brain training is nothing new decision-making. but surged to prominence in the last decade The researchers found that the training didn't with the dawn of games on handheld devices induce any changes in brain activity or decision such as Nintendo DS and mobile phone apps. making during these tasks.

The idea that a few hours of play can enhance The participants were also asked to complete your brain power is certainly appealing, a series of cognitive tests that were not part especially to older generations in a consumer of the training to see if the program had any world dominated by anti-ageing potions, effect on their general cognitive abilities. lotions and therapies.

While both groups showed improvement, Yet a study at the University of Pennsylvania the researchers found that commercial brain has found brain training computer games do training did not lead to any more improvement not make users any cleverer. than online video games. Furthermore, when The researchers defined intelligence as the they asked a no-contact group, which didn’t ability to make less impulsive and more future complete commercial brain training or video oriented decisions – a common trait in people games, to complete the tests, the researchers with strong cognitive abilities. found that the participants showed the same This stems from tests involving choices level of improvement as the first two groups, between immediate smaller rewards and indicating that neither brain training or online delayed larger rewards. Researchers also knew video games led to cognitive improvements that this behaviour is likely to be mediated by beyond likely practice effects. a set of brain structures in the dorsolateral Kable said: “I think we'd all like to have better prefrontal area of the brain - areas that have cognitive abilities and we all see ways in which been linked to performance on executive the vagaries of where we grew up and what function tasks like those featured on the school we went to and who our parents were Lumosity brand of brain training games that had these effects on learning at an early age. was used in the study.

The notion that you could do something now Co-lead researcher Joseph Kable said: “The that would remediate it was very exciting. I logic would be that if you can train cognitive think it was just an idea that really needed to abilities and change activity in these brain be tested.” structures, then that may change your A much more positive assessment of brain

D

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training was published by Cambridge University recently. It investigated the use of brain training by people with amnestic mild cognitive impairment (aMCI) - the transitional stage between healthy ageing and dementia.

It is characterised by day-to-day memory difficulties and problems of motivation.

Cognitive training has shown some benefits, such as speed of attentional processing, for patients with aMCI, but training packages are typically repetitive and boring, affecting patients’ motivation. To overcome this problem, researchers from the Departments of Psychiatry and Clinical Neurosciences and the Behavioural and Clinical Neuroscience Institute at the University of Cambridge developed Game Show, a memory game app, in collaboration with patients with aMCI, and tested its effects on cognition and motivation.

The researchers randomly assigned 42 patients with aMCI to either the cognitive training or control group. Participants in the cognitive training group played the memory game for eight one-hour sessions over a fourweek period; participants in the control group continued their clinic visits as usual.

The results showed that patients who played the game made around a third fewer errors and improved their memory score by around 40 per cent, showing that they had correctly remembered the locations of more information at the first attempt on a test of episodic memory. Episodic memory is important for day-to-day activities and is used, for example, when remembering where we left our keys in the house or where we parked our car in a multi-story car park. Compared to the control group, the cognitive training group also retained more complex visual information after training.

See page 54 for more on neural gaming.

COMMENT sponsored feature

Making every day count Dr Lorraine Childs and Victoria Joy, psychologists at St Andrew’s Hospital in Northampton, on the power of patient-led neurobehavioural rehabilitation.

Rose ward is a medium secure neurorehabilitation unit for adult men with a brain injury.

Patients have a range of neurological and psychiatric diagnoses including; ABI, TBI, dementia, stroke, epilepsy, Huntington’s disease and psychosis. They are admitted if assessment indicates they may benefit from neurobehavioural rehabilitation in a forensic environment.

Typically, patients in secure environments have avoidance-based goals (i.e. to not exhibit aggression), even though these can damage engagement and motivation (Mann et al, 2004). Further, contextual factors like hopelessness, pathology and progress delays can cause frustration. Thus goals and context can increase the likelihood of aggression, resulting in immediate failure and negating preceding successes. Boosting hope, engagement and motivation is therefore key for compliance and change (Jeandarme et al, 2016). Across discussions, our patients were reporting these frustrations, with concerns over delays in transition and lack of progress recognition. Staff, in response, started a ‘Better Lives Group’ (BLG), which empowered patient influence on the neurobehavioural programme. Essentially, we had a traffic light behavioural recording system to indicate if individual’s daily risks were red, amber or green. This system required minimal cognitive effort or memory. Recordings were helpful, but real change occurred only after patients requested longitudinal charts of their daily

levels and they could follow how long they had been on green. In meetings, patients discussed their time on green and it became clear that people moving on were those who had been on green the longest. Then, instead of asking "how long am I here for?", patients stated how long they’d been on green for and aimed to stay on it ‘to move on’. The ward adopted a slogan based on a Muhammad Ali quote: "Don’t count the days, make the days count".

Red-related concerns became green-driven celebrations of behaviour befitting of lower security settings. Avoidance goals had become approach goals (Ward & Stewart, 2003) within a structured environment supportive of positive behaviours (Woods, 1987).

Patients then requested recognition for staying on green – and the ‘Rose Exchange’ was born. Patients receive a ‘rose’ token for every seven days they spend on green. These are exchanged at the end of the month, for items like games and healthy snacks. Each rose costs about 50p, with prizes worth up to £2. The prizes may not be extravagant but the recognition they encompass is highly motivating. This corresponds with drug rehabilitation research evidencing the motivational aspects of a slip of paper or donut because of the recognition it represents (Petry and Bohn, 2003).

A year into the adapted TLS, daily feedback had increased from 17 to 100 per cent. Patients linked green behaviour and moving on; staff said it provided consistency in communication and goal relevance; the CQC described it as "innovative".

There had been a 37 per cent fall in aggressive incidents over the same three month periods in consecutive years (1081 v 687) and transition was underway to a lower secure placement for 7/17 patients. On average, patients spent 88 per cent of their time on green, with the remainder split evenly between red and amber. Discussing aggression with patients using this objective, positive perspective enhanced communication and opportunities for insight. Meanwhile, in the first five months of the Rose Exchange, the monthly number of roses earnt increased by nine per cent to 75 per cent.

Overall, TLS has helped patients to prepare for transition to low secure placements, whilst reducing aggression and promoting prosocial behaviour. Even patients with memory problems are able to follow their TLS status and attitudes towards the system remain positive. Success is celebrated with a small reward, but plenty of recognition.

When a move to a lesser secure environment seems far away, the programme reminds patients that every day counts.

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INTERVIEW

Dr Simon Kemp, chief medical officer at the RFU, is a key player in rugby’s battle to get to grips with the threat of concussion. Here he tells Andrew Mernin how the game is adapting at every level and closing in answers on the long-term impact of contact sports on the brain.

GRAPPLING WITH A FEARSOME FOE

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INTERVIEW

Addressing the challenge of concussion in rugby is like a skirmish with the marauding All Blacks. Hazards emerge from every angle and each advancing metre is hard fought.

Leading the line is Dr Simon Kemp, chief medical officer at English rugby’s governing

body the RFU and a former physician to the England squad.

With his involvement, the game has made significant progress in improving its handling of concussion in recent years, but the battle is far from won.

“Concussion is just about the most difficult sports injury to diagnose and recognise because it can present in so many different ways,” he says. “It can lead to two or three

seconds of unconsciousness with no signs or symptoms afterwards - or can present with somebody who develops a headache over the course of four to 24 hours, for example.”

Custodians of the game are working on several fronts to better prevent, manage and understand concussion at every level, from schools and grassroots to the top tier.

Like football, American football and boxing, rugby must also answer difficult questions about its long-term impact on the brain. This follows revelations about links between football and NFL to CTE, the progressive degenerative brain disease caused by repetitive brain trauma and associated with dementia.

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INTERVIEW

LONG-TERM STUDY Kemp says: “Sport in general needs to answer the question of whether there is an association between playing sports and neurocognitive decline. It’s a difficult question to answer because, as we age, we all see neurocognitive decline, which is one of the reasons for the limited amount of evidence around to date.

“We acknowledge that there may be an association [between rugby and CTE] but the reality is that the available evidence is limited and conflicting. Unlike some other sports, we do actually have a long-term study underway, involving 205 ex-rugby players, most of whom were England internationals. Rugby has been pretty upfront about this issue.”

The RFU is working on the study with the London School of Hygiene & Tropical Medicine and researchers from Queen Mary University of London, The Institute of Occupational Medicine, University College London and Oxford University. It is backed by £450,000 in funding from The Drake Foundation, which supports sports concussion research. Results are expected to be published next year.

more dangerous – heights and weights of players have remained stable since 2002, after an initial surge when the game turned professional in 1996. Rather, Kemp puts rising concussion rates down to greater recognition of the condition.

“In the professional game, reported concussions have been going up dramatically over the last five years but all other contact injuries have remained stable. We think the rise is because we are much better at recognising it.”

This surge in reported concussions corresponds with the establishment of World Rugby’s Head Injury Assessment (HIA) tool, which underpins concussion management in the elite game.

It consists of a three-step process of assessment for any player suspected of sustaining a concussion. The first stage involves 11 immediate and permanent removal criteria relating to factors such as consciousness, balance or behavioural changes. “The player absolutely does not go back onto the pitch if any of these criteria are met,” says Kemp. An off-field screening tool, pitch-side video review system and evaluation by an attending doctor are also involved at stage one. Stages two and three cover tests and assessments for early signs of concussion, within three hours of the match, and delayed signs, after the player has had two night’s sleep.

The protocol was introduced in 2012 – a year in which an estimated 56 per cent of players later deemed to be concussed stayed on the field. The latest available stats, from 2015/16, put that figure at nine per cent, with the fourth version of HIA now in play.

As often happens at the intersection between much-loved sports and newly installed regulations, the HIA protocol has attracted some criticism. And, despite its continual improvement via updated versions, it cannot

protect against every concussive incident in every match.

LESSONS TO LEARN Last year Northampton winger George North was allowed to return to the pitch at Leicester, despite having appeared to lose consciousness. A review found there was enough evidence from footage of the incident, together with North’s history of concussion, to have kept him off the field.

It accepted that Northampton’s medical team acted in the best interests of the player, however, since it had not seen all the available video footage due to Wi-Fi problems.

Rugby’s response was swift. The Concussion Management Review Group drew up nine recommendations, which were implemented by Premiership Rugby.

They included ensuring a pitch-side video reviewer remains in their allocated seat and has backup to make sure video feeds are monitored continually.

Various Wi-Fi protocols and a stipulation that medical rooms should have hard-wire video feeds were among other measures.

Former World Rugby medical adviser Dr Barry O’Driscoll said at the time that the episode showed: “The protocols are totally unfit for purpose. Time and again they are putting brain damaged players back on the field.” O’Driscoll quit his role at World Rugby in 2012 in protest at the way concussion was being handled.

In the absence of a proven and objective, single pitch-side test for concussion, Kemp insists the HIA system is performing well in terms of protecting players. Official data backs this up; in 2015/16, 98.5 per cent of head injury events in the Premiership were managed according to the protocol.

“HIA has evolved since 2012 and it really is pretty sophisticated now. The tools that we

DETECTION IMPROVING At the last count in 2015/16, concussion accounted for 25 per cent of all match injuries in the English professional game, up from 17 per cent the year before. But the sport is not necessarily becoming

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The shorter or less mobile child who might not get a look in in soccer may have a place on the rugby team

INTERVIEW

have to identify concussion are of real value, but they are, of course, subjective.”

Should an accurate, objective pitch-side test emerge, Kemp envisages it being embedded into HIA protocols, rather than replacing them. Such a test might be based on saliva samples, if trials taking place this season in the Premiership and Championship are successful.

CONCLUSIVE TESTING The study, being carried out in collaboration with the RFU, Premiership Rugby and the Rugby Players’ Association, will run throughout the 2017/18 season and is the biggest of its kind in the history of UK sport.

Birmingham University, led by neurosurgeon Professor Tony Belli, has spent the last nine years working towards a test that measures biomarkers present in the saliva and urine of players. If validated, it could be carried out on a hand-held device, which is currently

under development.

Professor Belli says: “If these biomarkers are found to be reliable, we can continue our work with industrial partners with the hope of having a device available within the next two years that will instantaneously diagnose concussion on the pitch-side with the same accuracy as in the laboratory - a major step forward for both sport and medicine.”

While rugby works towards a fast, watertight pitch-side concussion test, what other interventions might minimise the risk of brain injuries in the game? NFL or amateur boxing-style head guards are often suggested, perhaps by those uninitiated with the medical implications of contact sports.

These, says Kemp, would be pointless in relation to head injuries.

“Rugby headgear can protect against head lacerations and cauliflower ears but there aren’t any helmets in sport that have been shown to protect against concussion.

They can prevent skull fracture, but not the rotational, acceleration and deceleration injuries that are associated with concussion.”

One safety measure which has been adopted by the professional game recently is an increase in the sanctions players receive for tackles made over shoulder level.

In January this year, the minimum on-field sanction for a reckless (high) tackle was upgraded to a yellow card with a maximum of red, while the minimum on-field sanction for an accidental (high) tackle is now a penalty.

“We are already starting to see more penalties and yellow cards as a result, so referees are definitely implementing it.”

Time will tell whether this heightened threat of an early bath or time in the sin-bin leads to a reduction in concussion rates.

ESSENTIAL EDUCATION A longer-established part of rugby’s concussion prevention strategy is the

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training course delivered to all players and backroom staff at every club in English rugby’s top two divisions.

The club doctor at each of the 24 clubs runs an hour-long concussion session, with mandatory attendance for every member of the playing, coaching and support staff.

Around 1,300 people have now been through the course since its launch in 2014.

“It has transformed the way players understand concussion. They are really well informed about what it looks like, what it feels like and why they need to come off. The course also talks them through what the potential consequences are.

“In the short term, if they stay on the field, they have an increased risk of further injury, their performance goes down and their symptoms are likely to last longer.

We also talk about the potential long-term

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consequences. We don’t know exactly what they might be, which is why it is so important to get across to players why they need to be removed in order to recover and return safely.”

At amateur and age group levels of rugby, concussion education is not mandatory, but plays a crucial role in protecting players.

The RFU runs online courses and offers a wealth of resources to school and community teams through its Headcase initiative.

They include advice, assessment tools and changing room posters with the slogan "DON’T BE A HEADCASE, STOP! CHECK FOR CONCUSSION".

Tens of thousands of people have undergone training via the scheme since it was launched in January 2013. The grassroots campaign advises anyone involved in the game to; ‘Recognise, Remove, Recover, Return’ and

Kemp says the message is hitting home.

“Evidence suggests that the simpler your message, the more likely it is to be remembered. We’ve been working hard around the Headcase resource to achieve this, including through the commissioning of a video animation which has gone down particularly well with teenage players.

“The message is getting through but it needs to reach millions of people and it hasn’t got to everybody yet. We also need to consider what is rugby’s responsibility and what is that of the departments of education and health.

“Our principle responsibility is to get the message to coaches, players and parents.

We can help in terms of getting the message out to GPs, emergency doctors and teachers but we do need support from government departments, which, in fact, we have very good relationships with.

INTERVIEW

“Also, concussion advice to teachers needs to be consistent across sport, which is why we’re working with other sports and our advice is aligned with soccer’s for example.”

SCHOOLS MUST ADAPT An important element of the RFU’s work with schools is providing guidance on what happens after a concussion.

“If a pupil sustained a concussion on a Saturday and still had a headache on the Monday, they shouldn’t be back into a full school programme. We have been working with schools to help them understand that they may need to make some academic adjustments as the pupil recovers from the injury.

“This is a big task but schools are increasingly receptive. Some independent schools with big rugby programmes have even developed an approach to player recovery that looks very similar to that of professional clubs.”

In concussion prevention and management, the amateur and schools-levels of rugby take their lead from the professionals.

“Concussion is the same injury in professional, community and age group rugby. But the way it is managed varies because of the different resources you have. The principals are the same however and are consistent with the science [of concussion].

“How concussion is managed at the professional end drives how it is managed at the community end.

“So it is incredibly important in the professional game that we recognise and remove players with suspected concussion and do not leave them on the pitch. By doing so, we send a message to the community and age group levels.”

Further protection for young people comes via a lower threshold for leaving the pitch, and a slower return to play.

“Schools rugby doesn’t have video evidence, but does have the coaches, parents, teachers and other players all alert to the possibility of concussion and players coming off.”

Young players also experience a gradual increase in the level of contact permitted in their game as they get older. Full contact rugby is not played until players turn 15, a strategy which also protects players from head injuries, says Kemp.

EXERCISE MAY PROTECT YOUNG PLAYERS New measures could further protect young players, meanwhile. Recent research from the University of Bath found that a 20-minute exercise programme for young rugby players to improve their strength and balance could help to reduce concussion injuries.

A study, involving 14 to 18-year-olds across 40 schools, found 59 per cent fewer concussions in schools that completed the exercises three times a week, compared to those that didn’t. The exercises focused on increasing neck muscle strength, balance and movement. The RFU is rolling out the programme in schools in England this season.

Other researchers suggest the game should go even further to prevent concussion in school rugby. A Newcastle University study, published in July in the British Journal of Sports Medicine, re-examined existing evidence on the rates and risks of injuries in sport. It cited “strong evidence” from Canada that removing the "body check" from youth ice-hockey, where a player deliberately makes contact with an opposing player to separate them from the ice-puck, led to a 67 per cent reduction in concussion risk.

The report drew parallels with rugby and urged a ban on tackling in the youth game; although another recent study in the same

journal suggested concussion risk in youth rugby is no higher than in other sports.

Kemp urges balance when considering the risks and rewards of young people playing rugby. “You have to look at both the sport’s benefits and negative elements. The reality is, at a time when our children are becoming increasingly sedentary and heavy, the place for physical activity in sport is increasingly valued.

“One of the important points about rugby is that it’s a game for all shapes and sizes. The shorter or less mobile child who might not get a look in in soccer, may have a place on the rugby team.”

Yet, despite rugby’s obvious health benefits, is there a danger that officious head teachers might still be tempted to avoid any rugby-related risks completely?

In the US, where American football is still reeling from revelations about links to early-onset dementia, non-contact, ‘flag football’ is reportedly replacing the pigskin in some schools.

Non-contact forms of rugby are already in existence here, but Kemp sees no signs of a drop in appetite for proper rugby among young people.

“Clearly as we become more aware of injury risks, it might change how schools review individual sports, but at the moment the uptake of rugby in schools is significantly growing,” he says.

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INSIGHT

NOT TO BE SNIFFED AT...

Disease detection dogs show amazing potential, with new studies investigating their relevance to brain and spinal conditions. Andrew Mernin meets their master to find out more.

Like most dedicated healthcare staff, Kim is up early on weekdays. After a healthy breakfast, she heads to work, ready for her shift. She spends the day embroiled in ground-breaking disease research and is rewarded handsomely for her efforts.

Unusually for a health worker, however, she walks on all fours and wags her tail when she’s happy.

Kim is a black Labrador and her employer is Medical Detection Dogs – an organisation that looks certain to have a greater impact in neuro-rehab circles in future.

The Milton Keynes group has caught the world’s attention in recent years for exploring the canine ability to detect cancer at its earliest stages in urine, breath and swab samples.

It is now bounding into the fields of neurological conditions and spinal injury, with huge potential implications for patients and professionals.

The charity has thirty dogs working on detection of cancer and pseudomonas (common bacteria that can cause infections).

It also trains dogs to alert owners who have conditions like diabetes and are at risk of lapsing into life-threatening comas. The dogs sense the onset of a spike or drop in blood sugar levels long before the owner can. With certain conditions where a person

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INSIGHT

If this works with Parkinson's, there is absolutely no reason why it couldn't work with other neurological conditions

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INSIGHT

may be at risk of collapsing, such as Postural Tachycardia Syndrome (PoTS), the dogs are trained to give their master a few minutes’ warning and ensure they lie or sit down safely.

The group’s latest foray is a two-year study into Parkinson’s which, if successful, could pave the way for further exploration into brain conditions.

CEO and founder Dr Claire Guest says: “If this works with Parkinson’s then there is absolutely no reason why it couldn’t work with other neurological conditions. They all have a unique odour associated with a chemical change.

“Parkinson’s is a horrible disease – my own father was diagnosed with it a year or so ago.

In terms of diagnosis, there are a series of symptoms for a number of years and then it starts to look more and more Parkinsonian.

People aren’t diagnosed until they are

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There may be many more conditions, including neurological ones, that dogs can assist with in the future

relatively severe and damage is being done to the brain all that time.”

The study involves Manchester University, with funds from Parkinson’s UK and The Michael J. Fox Foundation for Parkinson’s Research. Dogs will be challenged in incrementally more complicated ways to detect Parkinson’s from skin swabs. Multiple testing will be used to thoroughly establish reliability levels. With no definitive test for

Parkinson’s – which is notoriously hard to spot in its early stages – successful results could be a landmark achievement.

Claire is hopeful of meaningful evidence by early next year.

“At this point we are talking about diagnostics. We could offer a service whereby clinicians send a sample of a patient they are concerned about and we could find out whether they have the Parkinson’s odour.

We wouldn’t be screening individuals themselves, everything would have to go through a medic.

“In the future, if you have a younger person who may be having some mild symptoms, we could detect Parkinson’s much, much earlier.

We would be supporting other Parkinson’s researchers and assisting in the development of early intervention.

“We’re very excited as it seems likely that the dogs are going to be able to smell it.”

INSIGHT

She recognised the smell immediately when she was cleaning his clothes and he was later diagnosed

Claire’s confidence comes from her knowledge of the power of the canine nose and also existing evidence.

“Whenever we do any detection work, it always comes from anecdotes in the early stages. A Parkinson’s nurse called Joy Milne in Scotland believed she could recognise a change in odour with the patients she was working with. Then her husband started getting some debilitating symptoms when he was around 40. She recognised the smell immediately when she was cleaning his clothes. It took some time but he was eventually diagnosed with Parkinson’s.”

Milne worked with Edinburgh University on a subsequent study, smelling t-shirts worn by patients. She correctly identified whether or not the patient had Parkinson’s in nine out of 10 cases. She believed the tenth t-shirt was Parkinsonian, which was officially deemed incorrect, but that patient was diagnosed with the disease the following year. If this is what a human can detect, imagine what a dog’s sniffing power could do for Parkinson’s detection, thought Claire.

While a human may be able to smell a teaspoon of sugar in a cup of tea, a dog can sniff it out in enough water to fill two Olympic-sized swimming pools.

Claire launched her organisation in 2008 and has since focused on turning anecdotal evidence into hard boiled facts.

“There is a lot of evidence that dogs can detect cancer with 80 to 90 per cent reliability but these have been with small sample sizes,” she says.

An NHS-backed trial is currently underway to test the accuracy of prostate and other urological cancer detection by the dogs. The study, involving Milton Keynes Hospital NHS Foundation Trust, could spare many from unnecessary biopsies. The trial was approved following earlier studies which showed 93 per cent accuracy in detecting prostate tumours from urine samples.

A similar trial is also ongoing for breast cancer – a disease Claire has direct experience of.

In 2009, her life was saved when her Labrador Daisy sniffed out a deep-seated tumour in her breast, which might otherwise have gone undetected.

A 2006 study (McCulloch et al) tested dogs’ ability to distinguish breath samples of 31 breast cancer patients from those of the 83 healthy controls. Among breast cancer patients and controls, sensitivity and specificity was strong but there were some limitations in the design of the study and number of subjects. The new, larger study aims to provide further supporting evidence, using breath samples from volunteers in Buckinghamshire.

Claire was previously involved in a 2004 bladder cancer study published in the British Medical Journal. It concluded that: “Dogs can be trained to distinguish patients with bladder cancer on the basis of urine odour more successfully than would be expected by chance alone.”

Claire says: “After that study there was huge interest in this area. Cancer is one of the most difficult things to detect because you are looking at a very complicated condition and the amount of volatile in a urine sample can be very low.”

All the charity’s dogs live at home with foster families, and come in to ‘work’ for only two or three short sessions every day.

As a working environment, it sounds like the doggy equivalent of California’s Googleplex.

Instead of the hammocks and beanbags of Silicon Valley ‘work spaces’, dogs chill out on comfortable beds in their own special areas. Just like Google’s ‘playtime’, which encourages staff to stay sharp by doing their own thing and having fun, the dogs are encouraged to romp around an adjacent field between sessions.

But this is a serious business – as the

wider world is finally realising after years of scepticism.

“The reaction we got 10 years ago was either ‘ooh that’s interesting’ or ‘that’s just crazy’.

But things have moved on, with published papers and a growing understanding of how our dogs are assisting people with long-term health conditions and making a genuine difference to their lives. It is definitely filtering through at all levels that dogs can assist.”

Accuracy and reliability are two crucial factors being tested. Every morning, the dogs are “calibrated on samples” to check their noses are tuned into what they are looking for. During testing, databases are running in the background, checking the same sample on different dogs to confirm an answer.

A new area being tested is detection of the bacteria that causes urinary tract infections (UTIs). Specifically, Medical Detection Dogs is aiming to help spinal injury patients among whom UTIs are particularly common. After a spinal cord injury there is an increased risk of UTIs as bladder management methods such as catheterisation can make it easier for bacteria to enter the bladder.

“The dogs are able to pick up the odour of the bacteria very quickly, before the person becomes unwell. They could smell it in the urine very reliably and rapidly.

“We are also looking at a pilot in which we would place a dog with an individual with a spinal injury to see how we could assist them with detection at a very early stage UTI. If this works well, the dog would probably do some other task work to assist the individual in other ways. Perhaps every morning they could screen a urine sample to detect whether bacteria levels are normal.”

And there may be many more conditions, including those in the neurological field, that dogs can assist with in the future.

“We are approached by many clients with many different chronic diseases and illnesses and we are finding that dogs can help with most of these conditions.

"It seems that when we are unwell and something acute is happening, our odours do change and we believe there are a whole range of different conditions that we can help to detect.”

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INTERVIEW

Hurtling down mountains, catching giant waves and staring straight into the jaws of deadly predators; welcome to Maggie Sargent’s adventurous take on neuro-rehab.

TAKING THE REHAB JOURNEY Catastrophic injuries have an ugly habit of robbing survivors of their dreams and ambitions.

Bucket list items like dancing with tribal warriors or eyeballing sharks in the deep can suddenly seem unattainable.

Even less exotic desires, such as skiing or surfing, may be lost in the looming shadow of the fateful event.

Yet reviving these written-off wishes can have a dramatic and long-lasting impact on the rehab journey, says case management expert Maggie Sargent.

Maggie is co-director of Community Case Management Services (CCMS) and runs her own expert witness reports business.

Among people with disabilities and challenges caused by severe injuries or other factors, however, she is perhaps better known as an instigator of global adventures.

Skiing, surfing and safaris are all part of her efforts to encourage clients and their families to do things they had either given up on – or never thought were possible.

A popular fixture is a regular children’s ski trip, with 50 to 70 people including parents, siblings, support staff and volunteers jetting off to the slopes every year.

“I insist they bring their siblings as it’s so important that the whole family are

e t s i p f f o

involved. Also, if they are in a wheelchair [and therefore ‘sit-skiing’] it’s the one thing that they are probably faster at than their brothers and sisters.”

Another recent trip was a group holiday to Africa which took clients from ocean depths loaded with tropical fish to the fireside of a remote tribe; and many places in between.

But the trips offer much more to clients than merely a week or so of fun and escapism, says Maggie.

“It gives them something to work towards in their rehab; a tangible goal.”

This involves a planning process which may encourage the client to think about how the holiday will be funded. Money from the individual’s allocated care resources may be used, but often the client will need to take a lead on raising charitable funds or saving for the trip.

Wrapped up in the holiday are several vital elements of rehab, says Maggie.

“We are giving them physio, speech and

occupational therapy. In terms of physio, we’re looking to get the best possible physical benefits from whatever activity they are going to do. In planning and organising the trip, you are using OT skills, trying to be as independent as possible. Are there communication needs ahead of the trip?

Speech therapy could include new languages or just looking at how the client is going to communicate. Mobile phones, radios, bleep systems and assistive technology are all things we might use.

“Also there is a psychological element. How are they going to get on with other people?

What are they going to be doing on the trip?

Half the fun of going on holiday is imagining what it will be like. This can be quite difficult if you are [disabled] and your last holiday may have been when you were an ablebodied 18-year-old, for example.”

The lure of an upcoming overseas adventure can inspire dramatic change in the individual’s outlook and motivation. Often,

The lure of an upcoming adventure can inspire dramatic change in an individual's outlook

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Maggie Sargent

it also forces families and loved ones to think differently and break out of the safe house they have built around the client.

“It reminds them that this individual is the same person they were before their accident or incident. This can be quite hard for the family to accept because the individual has been living in the cocoon of being a patient, looked after and not getting out there. It’s easy to hide from reality and so these trips

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can be a big reality check for families as well as clients.”

Understandably if their son or daughter has suffered a catastrophic injury, some parents require reassurances if they are consenting to something potentially risky like skiing.

Videos play an important role here.

“For example, you may have someone catastrophically injured with quadriplegia and communication problems but bags of

awareness. You can immediately see the feedback on the client’s face and how they respond. We sometimes record this and send films to families to show them how things are going. We might also take them to a dry ski slope beforehand to show what we’re suggesting is possible.”

The trips are not designed to feel like a once-in-a-lifetime opportunity to the client.

Instead they are organised with the aim of creating a new, more positive sense of normal, with less limitations and more possibilities.

“Unfortunately, so many people with a brain injury living with residential support just don’t have many people to go out with socially, to spend time with, go shopping with and so on. We are building up a tolerance to these activities.

“It’s also about getting back to normal experiences. A lot of young people have skied or surfed before and have been camping and travelled. But after their injury their world becomes narrow. Our whole idea is to make the trip feel as normal as possible.

INTERVIEW

He was desperate to start communicating after seeing someone else with a brain injury doing it

"We include people who want to volunteer and those who want to come on holiday as a professional, so everyone is part of an interesting group of people. It’s about making sure the clients are given space to do an activity where they are supported but are not over-supervised and there is an element of normality about it.”

An important ingredient of the trips is the consistent stimulation they offer. This comes not only from flying down ski slopes or swimming with deadly predators, however. It also thrives in the smaller things that make up a holiday. Fresh experiences can be found relaxing in the hotel pool, chatting with newfound friends over breakfast or marvelling at strange sights and sounds through a

minibus window.

A common change in clients as a result, is greater engagement with others. Maggie recalls one brain injured 30-something who began initiating conversations after several group trips – having previously remained silent in social situations.

In another case, a young disabled man unable to communicate other than by making a few gestures, had a life-changing experience on a ski trip.

“He met another brain injured individual who’d been communicating with his own form of sign language for some years and was a real character. Within a week he had taught the young man hundreds of signs and he was able to communicate so much better than before. He was absolutely locked into this other man and the two spent hours after skiing communicating.

“He was desperate to start communicating after seeing someone else with a brain injury doing it. We took a physiotherapist with him and she was able to act as a conduit, helping him to work out how to make the signs.”

This case sums up what Maggie calls “the greatest force” of the holidays; the willingness and capacity of clients to help each other out. A common goal, examples of other people overcoming challenges and a situation which takes people out of their comfort zone all encourage great camaraderie and teamwork, she says.

“What is surprising is the tolerance there can be between clients in wheelchairs and those that aren’t. There is a mutual admiration between people facing different challenges. People with brain injuries that are able-bodied tend to help those that aren’t as physically able, and vice versa. There’s a respect between members of the group who are doing a certain activity together and enjoying each other’s company with an open mind.”

This open-mindedness extends to Maggie and her team. When a brain injured young man expressed an interest in going skiing – they had the vision to see past the ventilator keeping him alive. It took six support staff and five ski instructors, but the fact that he was up at 4am in the hotel, the first one

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down for breakfast and “the last man on the mountain” at the end of the day, suggests it was well worth the effort.

“When he was in Canada on a gap year training to be a ski instructor he’d had meningitis. He was later paralysed and became totally dependent. I promised we could get him back on a ski slope but had to fight very hard for him.”

With around 30 years in case management under her belt, Maggie has experienced the field’s growth from a fledgling profession to a vast sector. As it continues to evolve, she believes exciting group trips will play an ever-more important role in the case manager’s job in future.

“For some reason, as case managers, we are all very nervous about getting clients together. We tend to keep them boxed off from each other.

“But case management has grown and become mainstream, which it wasn’t 25 years ago. We must move with the times and mustn’t get left behind.

This includes increasing what we offer.

Because of their own constraints, the client may not be able to plan these trips themselves. I think this is where case management needs to be looking in the future.”

Maggie advises anyone organising group or individual excursions with potential risk factors to use the valuable support of charities and organisations with special expertise.

With brain injured clients in particular, organisers should also consider how to pace itineraries accordingly.

“Travelling can be tiring. Sometimes you have to educate overseas organisers about brain injuries and the fact that, although clients may look able-bodied, you need to take things one at a time at the right pace.”

Ultimately, just about any challenge can be overcome in pursuit of a potentially lifechanging trip, says Maggie.

“Sometimes you just have to be big and brave and say ‘we’re doing it!’”

It’s an approach that’s certainly worked for Maggie and her clients.

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TECHNOLOGY

player power

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TECHNOLOGY

Video games could transform neuro-rehab in the coming years, but a lack of research continues to hold progress back. NR Times heads to Germany on the hunt to unlock the mysteries and untold treasures of pixelated play for people with brain injuries and neurological conditions.

The lightning speed of games technology development in recent decades has unearthed a multitude of opportunities in healthcare. Yet for all the headway made since of the dawn of the home computing era, a gaping lack of knowledge about the true impact of games on the body and brain remains. Behind the mind-blowing graphics, Hollywood soundtracks – and vast global games industry – a mystery exists; why do we, as humans, play games?

Answering this could quicken the drive to better harness game play in neuro-rehab, believes neural gaming expert and prominent global neuro-rehab figure Professor Volker Hömberg.

“There is a fascination with game play,” he says. “It’s the reason people go to football and like to gamble when they sit in the casino. I am not entirely certain that we fully understand this fascination. One aspect is that it is related to freedom. The basic difference between work and play is that when you play, you are free. You are not embedded into some restraint system as you are in work. This is not sufficient to explain the real fascination which is attached to games, however.

“Children like to play and we provide them with toys; the question is why? One theory is that playing is an effortless type of activity that helps children to train their brains. It helps multisystem connections to be made, and so on. This

early-infancy type of game playing is important for brain maturisation.”

Hömberg is director of neurology at Gesundheitszentrum Bad Wimpfen rehabilitation centre and senior neurology group leader for the SRH-Group, one of Germany’s biggest hospital operators. He founded the German Society for Neurorehabilitation and is secretary general of the World Federation of Neurorehabilitation, among other international roles.

He has seen the power of gaming in neuro-rehab at closehand, but also sees its flaws.

He says: “Fundamentally, games help to keep motivation up.

They can also help to remodel patients’ motor or cognitive abilities. Due to enormous progress in technology, they are also relatively cheap and available.”

Clearly, motivating patients perhaps still coming to terms with a life-changing injury, often with the added burden of neural fatigue, is crucial in neuro-rehab.

“We have learned over the years that the more intensively we treat patients, the better the outcomes will be. To do so you must keep motivation up.

“But if you do too much, motivation may eventually drop and you must avoid what, in neurobiology, is called habituation. This occurs when the response of the nervous system to particular stimuli melts away if you repeat them too often. Effectively, things become boring and the system shuts down.”

Professionals using gaming in rehab must be careful to avoid this situation by ensuring games are challenging, fun, competitive or all three, says Hömberg. A bigger challenge facing the neuro-rehab field in general is establishing exactly which types of gaming can have the biggest positive impact on individual patients.

Over the centuries various philosophers and theorists have sought to identify the essence of games and why they so stimulate us. Hömberg identifies six main types of play that each have potential benefits to the human mind.

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They cover pure playful fun (in the sense of a leisure activity or child’s play), combat or competitive play, gambling, performing in-front of an audience through mimicry or imitation, play that incites a state of ecstasy and spectacle – watching sport or a show, for example.

The power of competitive play in helping people in rehab is of particular interest to Hömberg. He is currently involved in a study measuring the effect of competition on stroke patients.

“We are aiming to find out whether competition is an extra element that can speed up improvement in rehab.

Patients with moderate or mild motor problems in the upper extremities, often play games against robots who are connected to computers or software. We took this one step forward and asked what would happen if the patients played against each other in a competitive way. Within a year we’ll be able to analyse the data but it is looking like this approach could be really helpful in keeping motivation up and improving patients.”

Evidence linking video games with speedier rehabilitation has grown rapidly in recent years. 'Active' video games sold in the commercial mainstream, have shown mixed results in terms of boosting general fitness. They may have more tangible benefits in rehab, however. A 2013 study by US university Central Michigan found that playing such games improved coordination in people with traumatic brain injury (TBI). Patients who participated in a Microsoft Xbox Kinectsupported virtual therapy session had significantly improved balance, gait, and functional reach scores from baseline.

Video games may be particularly beneficial to children with brain injuries, meanwhile. A clinical trial earlier this year found that cognitive training game Project: EVO was able to eradicate sensory processing disorder in children with brain injuries, albeit in a minority of cases. A third of the 57 brain injured children no longer met the criteria for the disorder, which affects how the brain receives and responds to sensorial data.

Technology developer Akili Interactive Labs tested children playing the game over a four-week period and is now

"

investigating its potential application in ADHD cases.

Furthermore, Australia’s Macquarie University recently found evidence that first-person shooter games such as the popular Medal of Honour franchise, can help in TBI rehab.

In a pilot study, brain injured participants were trained in how to play the game, learning skills and strategies to help overcome specific challenges within it. As well as getting better at blasting baddies and completing levels, the trialists were able to complete some everyday tasks faster and more successfully than a control group.

The fact that the study was based on a relatively cheap and commercially available console and game gives the findings obvious appeal.

The overall consensus is that video games can indeed have a direct impact on the brain – even if scientists don’t quite know why. A report published this year in the neuroscience journal Frontiers collated 116 studies into how video games affect brain structure and activity. Lead author Marc Palaus summarised that video games can improve several types of attention, including sustained and selective.

The brain regions involved in attention are also more efficient in gamers and require less activation to sustain attention on demanding tasks. It also cited evidence that video games can increase the size and efficiency of brain regions related to visuospatial skills. It noted that the right hippocampus was enlarged in both long-term gamers and volunteers following a video game training program.

Researchers referenced in the report also found functional and structural changes in the neural reward system in gaming addicts – similar to those seen in other addictive disorders.

Yet despite the hefty pile of research papers evidencing the power of video games on people with brain injuries and neurological conditions, Hömberg believes much more insight is needed.

“The theoretical question remains, what aspect of gaming is the most important, in terms of rehabilitation? We don’t have a definitive answer yet. Nevertheless, I believe we are just scratching the surface of a very interesting, powerful

We are just scratching the surface of a very powerful introduction to rehab

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TECHNOLOGY

and useful introduction to rehabilitation.”

As technologists and neuroscientists dig ever deeper into this fertile ground of research, new advances for neurorehab will surely emerge. An aggravating factor continues to hold progress back, however, says Hömberg.

“It has taken many years to close the discourse differences between clinicians and technology engineers. The engineers have great ideas about amazing technology. On the other side is the clinician, saying ‘it’d be nice if we had this and that’.”

The challenge has been ensuring that a technology’s suitability for a particular clinical role takes priority over how advanced the technology can be, he says.

He draws on the teachings of the 19th Century philosopher Ludwig Wittgenstein who conceded that communication is a world of language games. It’s as though the techies are immersed in a frighteningly realistic 3D shoot ‘em up game while the people in white coats play Pong or Space Invaders.

“The language games the engineers and clinicians are playing are different and they think in different worlds. They are restricted to their own languages,” says Hömberg “We must cross this communication divide. It is vitally important that the developers understand the problem their technology is addressing.”

Hömberg believes tackling this challenge will help to unleash the potential of games in rehab – perhaps even more so than developments in the great looming AI age.

“Developing artificial intelligence will probably open up completely new possibilities – we are not in a position to

"

We must cross this communication divide say exactly what they might be. But more importantly, we need to tighten up the discourse between clinicians and technology developers.”

Like AI, virtual reality (VR) has also been vaunted as a potentially revolutionary force in rehab. There is nonconclusive, although compelling, evidence that VR can improve cognitive and motor functionality after brain injury and in other neurological conditions. VR advancements are being made at a rapid pace and momentum is building. The technology is partly being sold to the world as an alternative and cost-effective type of rehab therapy. Researchers are also investigating other ways it can aid rehab and recovery. At UCLA in the US, for example, VR is being used to monitor and analyse how memories are formed. Patients are transported into a virtual world and brain activity is recorded as they respond to their pixelated surroundings. UCLA says the work could lead to the development of therapeutic tools that help to restore memories in people with Alzheimer’s, TBI and other disorders.

Hömberg believes VR has an important role in rehab; but argues that the continual push to make VR environments ever-more realistic perhaps misses the point of the value of gaming.

“I’m sceptical about the application of virtual reality because there is nothing more real than reality,” he says.

“Patients have to learn to adapt to reality after a stroke or injury, for example. You can train patients in the real world in rehabilitation, except for in certain circumstances such as driving, where a simulator is likely to be used.

“The emotional and motivational elements of game play are much more important than how real the game’s setting feels,” he says.

“The important point is that there is a playful reality present.”

See page 34 for a report on the latest findings linking brain traning with improved cognitive ability.

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THERAPY

PERFECT HARMONY Researchers believe singing together may be the antidote to isolation and social disconnect experienced by stroke survivors with speech problems. NR Times reports on the 'Singing for Aphasia' study.

A new study is aiming to use the power of group singing to help people with post-stroke communication difficulties.

'Singing for People with Aphasia' will determine whether group singing sessions can reduce the impact the disorder has on people’s lives. Aphasia is a speech and language disorder caused by damage to the brain and it is thought that around one in three people who have had a stroke experience it to some degree. People with aphasia can struggle to speak and often make mistakes with the words they use, sometimes using the wrong sounds or

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putting words together incorrectly. They can also experience difficulty reading and writing.

The study hopes to address the psychosocial outcomes of aphasia, which researchers recognise are not being sufficiently met by healthcare services.

The research is led by the University of Exeter Medical School and backed by Stroke Association funding. Its focus is weighted towards the benefits of singing in a group - rather than specific music therapy techniques; but the study will provide a welcome addition to the growing, but relatively limited, evidence for music's

therapeutic qualities. The respected Cochrane body, which analyses research into specific areas of treatment, this year updated its stance on music interventions for acquired brain injury. It concluded that music may be beneficial for communication outcomes and quality of life after stroke, alongside gait and upper extremity function.

However, it warned: “These results are encouraging, but more high-quality randomised controlled trials are needed on all outcomes before recommendations can be made for clinical practice.”

Music’s role in helping aphasia patients recover lost or damaged speech and language skills needs no justification. A weight of evidence exists which proves its value. More interesting to research lead Mark Tarrant is the improved quality of life and reduced isolation that potentially comes from group singing.

In 2015/16 he led a smaller development study with 10 people with post-stroke aphasia, based at a community music centre

THERAPY

in South West England. Researchers noted an “emerging sense of shared social identity among participants”. As one volunteer put it: “Because we all have had brain problems it connects you all.”

Tarrant says: “When we started the project we thought singing might impact on people’s levels of aphasia because a lot of people with the condition can often sing. But in fact, many had come to accept that their aphasia wasn’t going to improve very much. What they were really struggling with were the associated psychosocial problems.

“These include a lack of confidence, being unable to go out socially and high degrees of loneliness, depression and anxiety.

“This approach is about empowering people to use group singing to develop their confidence and practice the skills of interaction once more.

It aims to help people get back out there and reconnect with society.”

“We are open to the possibility that language might be something that improves. However, most people we recruit will have already had their course of speech and language therapy. It’s an open question whether language will improve, and we are assessing the severity of aphasia during the project; but our principal focus is on the psychosocial skills that people tell us are the real continuing issue for them.”

The feeling of being disconnected from society is common among people with post-stroke aphasia and can have a dramatic impact on day-to-day life.

Tarrant says: “This isolation certainly came through in the meetings we had with people.

One person with aphasia talked about not having the confidence to go to his local corner shop. He said if the singing could help him get past that challenge, it would be a success for him. When we think about social isolation, what we may see as very small and trivial interactions can actually be quite significant to people with aphasia.”

The power of group singing as a catalyst for social connectivity is well evidenced.

A 2015 study by Oxford University researchers found that singing forges social bonds between people faster than other group activities.

Seven courses were set up through the Workers’ Educational Association, covering singing, crafts and creative writing. Surveys revealed that singing brought people closer together after a single two-hour session. Research lead Dr Eiluned Pearce said: “Singing broke the ice better than

the other activities, getting the group together faster by giving a boost to how close classmates felt towards each other right at the start of the course.” In the longer term, all the group activities achieved similar levels of closeness, but co-author Dr Jacques Launay concluded: “Given that musicmaking is an important part of all human cultures throughout history we think it probably evolved to serve some purpose. Evidence suggests that the really special thing music does for us is encourage social bonding between whole groups of people.”

These findings mirror those of the development study Tarrant led, involving the University of Exeter Medical School, the National Institute of Health Research and music charity Plymouth Music Zone. Participants reported that singing and music- making with others helped them develop a sense of group belonging, and felt that, if the singing sessions continued, participation in them would help improve their wellbeing.

“We believe that when such connections are made, the health benefits of group programmes may be maximised,” Tarrant said at the time.

The new pilot study will be significantly larger in scale, and could lead to even bigger things, with a nationwide study potentially in the pipeline.

“The principal question is not whether group singing works; we think there is a very good chance that it will. We are setting the groundwork for a full trial. We are looking at areas like recruitment, attendance and whether we can measure [progress] appropriately.

“Assuming the pilot runs well, people stay on the course and we can say this is an acceptable programme, then we can put together a strong application for a full trial. This would be a two or three-year, multicentre, national project.”

It is also hoped the pilot will help to form a new manual that community organisations can use to run their own group singing programmes for people with aphasia.

“It would essentially be a toolkit, providing best practice advice on how to run the programme.”

Up to 48 volunteers with aphasia in Devon and Cornwall are currently being recruited for the research trial, with weekly, 90 minute singing sessions taking place over 10 weeks.

The pilot study is funded by The Stroke Association and supported by the National Institute for health Research Collaboration for Leadership in Applied Health Research and Care South West Peninsula (NIHR PenCLAHRC).

About aphasia

An estimated 250,000 people in the UK have aphasia, with 20,000 new cases occurring each year, according to the charity Speakability.

It is an acquired communication disorder that impairs a person's ability to process language, but does not affect intelligence. Most people experience reading and writing difficulties, as well as an impaired ability to speak to and understand others.

The condition is caused by damage to the parts of the brain responsible for understanding and using language. Alongside stroke, other common causes of brain damage that can trigger aphasia include severe head injury, brain tumour and conditions that damage the brain and nervous system over time such as Alzheimer’s disease.

Most people affected by aphasia are 65 or over, largely because stroke and common progressive neurological conditions, such as dementia, tend to affect people in this age group. Younger people can also be affected however (see page 22 for more on stroke in young people).

The outlook for people with aphasia depends on the cause of the condition, the extent of the initial brain injury and the severity of symptoms. Most people will make at least some degree of recovery and many will recover fully.

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EVENTS

Dates for your diary OCT17 / 12

18

Navigating the ‘mind-field’ of post-traumatic brain injury.

Pullman International Hotel, St Pancras, London, NW1 2AJ. Find details via www.abisolutions.org.uk.

One-day introduction to motivational interviewing in brain injury rehabilitation: Advancing your practice.

VP Forensics, Lake View Drive, Sherwood Park, Nottingham, NG1 50HT. Find details via www.abisolutions.org.uk.

13

19

Recovery after brain injury: state of the art 2017.

The Royal Society of Medicine, 1 Wimpole St, London, W1G 0AE. Find details on ukabif.org.uk.

17

South Yorkshire Acquired Brain Injury Forum AGM / autumn event.

A talk from Faith Salih, solicitor in public law and human rights, workshops and networking opportunities as well as AGM activities.

The Salvation Army Church and Community Centre, Psalter Lane, Sheffield. Email SYABIF@irwinmitchell.com for details.

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Brain injury and the criminal justice system.

9.30am – 4pm, The XCentre, Commercial Road, Exeter, EX2 4AD. Speakers include Professor Huw Williams from the University of Exeter’s Centre for Clinical Neuropsychology Research.

Contact 01392 211822 or email learning@headwaydevon.org.uk for details.

20

United Kingdom Alliance of Neurorehabilitation Nurses Seminar.‘Working with families’ presented by Dr Audrey Daisley,

consultant clinical neuropsychologist and lead for OCE Clinical Neuropsychology and FamilySupport Service at the Oxford Centre for Enablement. This is a satellite session of the BANN (British Association of Neuroscience Nurses) Conference. The presentation will be followed by a short meeting of the steering committee delegates are encouraged to take part in the discussion. Jury’s Inn, Oxford. Find the event on ukabif.org.uk.

25

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

27

Northern Acquired Brain Injury Forum Meeting.

Walkergate Park, Benfield Rd, Newcastle upon Tyne, NE6 4QD. Email PaulBrown@thompsons.law.co.uk, call 0191 269 0600 or visit www.nabif.co.uk.

EVENTS

31

Annual Brain Injury Training Day. Clarke Willmott LLP, 1 Georges Square, Bath Street, Bristol, BS1 6BA. To register your interest email victoria. james@clarkewillmott.com.

NOV 17 / 13

UKABIF’s 9th Annual Conference 2017: Navigating the future for brain injury survivors.

The Royal Society of Medicine, 1 Wimpole St, London, W1G 0AE. See ukabif.org.uk for full details, email: info@ukabif.org.uk for info or call 0345 6080788 to book your place.

17

CMSUK Celebration & Awards Lunch.

Awards presented by guest speaker James Cracknell. Grange City hotel, London.

Contact info@cmsuk.org.

27

Neurobehavioural Disability after Acquired Brain Injury: Advances in the Management of Social Handicap Organised by the Department of Psychology, College of Human and Health Sciences and specialist care and rehab provider Elysium Neurological.

9am – 6.30pm, Swansea Marriott Hotel, Maritime Quarter, Swansea, SA13SS. Email claire.williams@swansea.ac.uk for further details. Bookings available via eventbrite.com.

27

South West Acquired Brain Injury Group Bristol and Bath – professionals in brain injury.

Royds Withy King, Midland Bridge Road, Bath, BA2 3FP. Contact Emma Merriman at emma@emrehab.com for details.

DEC 17 / 5

Acquired brain injury forum for London's 10th anniversary conference. Irwin Mitchell, 40 Holborn Viaduct, London, EC1N 2PZ. See abil.co.uk for more info.

14

The Rehabilitation Prescription Past, Present and Future.

As part of the development of Major Trauma pathways in 2010, every patient admitted to a Major Trauma Centre should have their rehabilitation needs assessed and documented through a Rehabilitation Prescription (RP). The event covers a range of key RP topics and is relevant to clinicians, case managers and personal injury lawyers.

Stewarts Law, 9 Bond Court, Leeds, LS1 2JZ. Email admin@ukabif.org.uk for details or book your place via www.ukabif.org.uk/event-registration.

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 61

CLOCKING OFF

Why sleep’s a no brainer We humans are an arrogant bunch, assuming we’re superior to our fellow earthly beings in most departments.

Yet the humble jellyfish seems to have one over us when it comes to sleep, despite our evolutionary vantage.

Scientists have discovered these otherwise simple organisms have an ingenious way of getting forty winks without distraction. The primitive jellyfish Cassiopea, which lives on the sea floor, is able to sleep without any involvement of its brain. No tossing and turning as thoughts whizz round the mind for this creature.

The species has no central nervous system and a body which pulses with a steady rhythm. Recordings over 24 hours showed they pulsed less frequently at night, but they could be “woken up” by dropping a little food into the tanks where they were kept.

“It’s the first example of sleep in animals without a brain,” said US researcher Professor Paul Sternberg from the California Institute of Technology.

Neuro-plastic fantastic Currently spreading wonderment in neuroscience circles is Niels Birbaumer’s new book, Your Brain Knows More Than You Think. The leading neurobiologist argues that neuroplasticity, the virtually limitless capacity of the brain to remould itself, is enough to overcome almost any condition, however life-limiting it seems.

The book takes readers into the sometimes-wild frontiers of neuroscience and provides inspiration for anyone interested in unlocking the brain’s untapped potential. It is available to buy via amazon.co.uk now.

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Jellyfish lead the way in sleeping without distraction

The no-munch bunch Silicon Valley’s billionaire bosses will try anything to get ahead. Brain-boosting (using magnetic manipulation or super-pills) has been particularly hot among the Californian elite in recent years.

But in their quest to squeeze every ounce of creative and strategic juice out of each working day, their attention has turned to a new elixir. According to reports, fasting is being used as a method of cranking up cranium power. Intermittent fasting – skipping meals for a day or more - supposedly increases their brains’ creative potential. “They are doing it to give themselves a performance boost, almost like steroids for the brain,” says Dr. Jason Fung, an international lecturer on intermittent fasting. Fung reckons fasting revs up brain hormones that make us feel better, and helps the liver to produce molecules which break down stored fat. NR Times in no way endorses this approach of course!

Southern expedition

The UK Acquired Brain Injury Forum, which serves as our editorial panel and keeps us hacks (mostly) clanger free, celebrates its 20th anniversary this year. To mark the occasion, chairman Mike Barnes aims to raise £20,000 for the organisation by running a half marathon on the remote ice sheets of the Antarctic. Ahead of the brave feat in November, generous folk can donate via his page on uk.virginmoneygiving.com.

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National Neurological Rehabilitation Chambers is the UK’s only specialist Chambers run by neurological rehabilitation professionals.

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