NR Times (Q1 2020)

ISSUE 13 Q1 2020

REM OT E RE SI STAN C E The shift that could change working life forever

I N A SPIN Cycling and its power to heal

QUARTERLY

CALM IN THE

STORM The unsung heroes H I D I N G M Y DIAG N O S IS How MS secret sparked a movement

keeping rehab journeys on track

Rehab tech empire on its past, present and future

RRP £9.99

THE HOC OMA S TO R Y

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V I S I T N R T I M E S .C O. U K F O R T H E L AT E S T N E U R O - R E H A B N E W S A N D O P I N I O N

A life free from paralysis Together we will make it happen A spinal cord injury could happen to any of us, at any time: a car accident, participating in a sport we love; a dive into a pool; or a trip on the stairs. Life can change in an instant.

Spinal Research is the UK’s leading charity funding world-class research into treatments that will improve sensation and movement for people with spinal cord injury.

Our aim is to address the devastating impact it has on daily life, including sensation, walking, breathing, hand movement, sexual function and bladder and bowel control.

Our vision is to see the day when a spinal cord injury will not mean a lifetime of paralysis.

Get in touch if you would like a FREE fundraising pack and help us to fund pioneering research into spinal cord injury repair:

www.spinal-research.org 020 7653 8935 fundraising@spinal-research.org

SpinalResearch

International Spinal Research Trust is a registered charity 1151015. A registered company limited by guarantee in England and Wales 8409361.

C O NTE NT S

30 HI DING MY D IAG N O S I S How MS secret sparked a movement.

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Rehab professionals mobilise amid coronavirus threat.

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SOARING AGAIN SO O N

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FUTURE THINKING

Jetting off out of the comfort zone in the name of recovery.

Predicting potential and the value of hypotheses in neuro-rehab.

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YE AR IN LIFE

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The ups and downs of setting up a new rehab hospital.

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TO TRE AT O R NOT TO TRE AT?

An update on cognitive-enhancing drugs.

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AG G RE SSIO N AND TBI

ACTIO N AM O NG THE DAFFO D ILS

A revolution in brain injury rehab in the heart of the English countryside.

The role of neurobehavioural rehabilitation.

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RE HAB P RE SC RIP TIO N 3.0?

48 THE HOC O MA STO R Y A 20 year adventure in rehab robotics.

60 WHE N INJU R Y U N LO CK S PRO D IG IOU S TAL E N T Exploring the mystery of post-brain injury savant.

Does flagging system need yet another upgrade?

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M USIC IS P OWE R

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M E D ICAL CANNABIS

Neurological music therapy and stroke recovery.

An update for professionals working with brain and spinal conditions.

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FAM ILY P E RSP E CTIV E S

7 0 CARE E R

How loved ones feel about brain injury services.

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RE M OTE RE SISTANC E

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The technology transforming goal management in rehab.

The healing powers of cycling.

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THE O NLY WAY IS UP

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A special report on rehabilitation's very own content kings.

M YSTE RIE S O F THE D E E P

The sleep disorder increasingly linked with neuro conditions.

Could you play your part in vital courtroom role?

SP INNING BAC K TO NO RM ALITY

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ED ITOR'S NOTE

Getting stuck in amid challenging conditions The rehab world's response to COVID-19 has been defined by grit, good humour and lots of innovation, writes NR Times editor Andrew Mernin.

You can learn a lot about an organisation in a crisis. In the white light of times like these, organisational problems can be exacerbated and the truth really does come out.

Take EasyJet for example. The airline recently asked for a government bailout to get it through the coronavirus crisis. No shame in that – if it hadn’t at the same time signed off a £174m payout to its shareholders.

For an organisation that claims to “support” and “empower” its staff, it seems it is directors and not workers who top the priorities list.

Then there’s Sports Direct – which tried to flout rules on only essential shops staying open, putting staff and customers at risk in the name of running socks and dart boards.

Against these shoddy crisis responses, however,

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most employers are valiantly trying to get on with life under these surreal conditions.

And the level of resilience I’ve seen from neurorehab companies and facilities has genuinely taken me by surprise; not that the feats of people in this field haven’t continually amazed me since we launched the magazine in 2016.

When coronavirus escalated from lingering concern to very real threat, the NR Times team had a crisis meeting; think Cobra but with Jaffa Cakes.

We tried to predict how events might unfold.

Like everyone else, none of us had experienced a global pandemic on these shores. The closest thing I’d had to working in any sort of national crisis came in a former life on newspapers covering the financial crash. It was a brutal time for businesses, amid bank runs and mass redundancies.

EDI TOR ' S NOTE

Staying the course as an employer was invariably tough, and there were many heroic leaders who strived to protect their staff. But the words “credit crunch” also became a veil behind which many business ills could be hidden. It became a catch-all excuse for incompetence, unfair dismissals and poor customer service.

So in my sheltered experience of crisis-times, there were those that did everything they could to rise to the challenge, with varying degrees of success, and those that made excuses and gave up.

But in this latest crisis, which makes the financial crash look like a trip to Disneyland, where would our interviewees, contributors and sponsors be on this spectrum?

After various video calls, four words sprang to mind: ‘tough as old boots’.

It wasn’t that COVID-19 didn’t worry the rehab professionals I spoke to – of course it did. But there was no drama or panic, just a steely resolve to protect vital staff and vulnerable clients.

There was plenty of ingenuity being shown too.

I spoke to care teams taking advantage of social media to help clients stay connected and others showing great flexibility to step in to help the NHS. Also rising to the challenge are those providing the technology, legal support, funding and guidance that is essential in enabling rehab journeys to continue without disruption. All have bucket-loads of can-do attitude and are united in an unflinching desire to maintain standards regardless of the looming external danger.

We’ve tried to reflect this resilience in this edition, but also to ensure that all the other important issues affecting neuro-rehab are not clouded by COVID-19. I hope it finds you in good spirits and gives you plenty to think about now and in the future when we come out the other side.

Sales Gary Wilding Gary@aspectpublishing.co.uk Chloe Hayward Chloe@aspectpublishing.co.uk Design design@aspectpublishing.co.uk Editorial Andrew Mernin, Deborah Johnson

Published by Aspect Publishing Ltd 11 Lansdowne Terrace, Newcastle upon Tyne, NE3 1HN. Registered company in England and Wales.

No. 10109188. Features labelled 'sponsored' are paid for by our sponsors who support the production of this magazine.

Andrew Mernin Andrew@aspectpublishing.co.uk

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Carrying on regardless Professionals involved in the care of people with brain and spinal injuries and conditions have risen to the challenge of COVID-19 in recent weeks. Deborah Johnson reports on how the rehab field is adjusting.

The way coronavirus has swept through the world has created an unprecedented situation which each country has had to adapt to.

In the UK, the total numbers of confirmed COVID-19 cases and fatalities due to the virus continue to rise and lockdown remains in place at the time of writing.

While business has had to temporarily end for many, particularly in sectors including retail and leisure, however, the situation is vastly different for those working in care.

Work must carry on to ensure patients are looked after as usual - particularly for neuro patients, whose needs are often particularly complex - with the additional challenge of protecting them, as well as fellow care professionals, from the deadly COVID-19.

The challenge for the sector is undeniably huge, but businesses are responding with commitment and determination to get through the weeks and months ahead.

Specialist care providers are adapting their ways of working in light of COVID-19, yet doing so in ways which offer the continuity their patients need.

Aliyyah-Begum Nasser, director of Askham Village

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Community, a family-owned care and rehabilitation community in Cambridgeshire, said her staff are doing all they can to keep morale high in these tough times.

“While everyone around us is closing down, shutting shop, staying in, our staff are continuing to show up for work and keep their smiles handy,” she says.

“Rehab requires motivation and we are doing our utmost to keep residents inspired and enthused to work hard to meet their goals.

"For the entire health ecosystem to continue to operate, we need to do our bit and keep people progressing towards their goals, and hopefully to discharge. This will enable others to come to us for rehab and thereby free up hospital beds.

“The cogs need to keep turning – despite all that is going on around us we are doing every we can to ensure the pace of rehab is not affected.”

Neurological care provider PJ Care, which operates three specialist centres across Milton Keynes and Peterborough, has implemented a raft of stringent protocols to constantly monitor the situation for the benefit of its patients, including monitoring staff and residents’ temperatures every four hours, checking staff daily for coronavirus symptoms, installing additional hygiene facilities, including new sinks at the entrance to all sites, plus identifying all high risk patients and staff and devising bespoke management plans around that. Mark Butler, director of operations at the firm says that, while such changes were quickly

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introduced, the decision has since been taken to also stop visiting to the centres. Restrictions have also been imposed on staff movement.

“Sadly, we had to take the decision to stop all nonessential visitors into PJ Care centres. There are very limited exceptions to this, which only really includes end of life family visiting, GPs visiting seriously ill residents, contractors repairing essential equipment, and other such situations. But we do offer video conferencing facilities so residents can keep in touch with their loved ones.

“Our new protocols detail our preparedness to address escalating levels of viral invasion. Stage one, which we have currently, is when no resident or staff member is affected by the virus, with stage two to be implemented if/when we are hit by an infection.”

Fourier Intelligence, a China-based exoskeleton company which works extensively with UK rehab providers, has also seen the impact of the restrictions on movement.

A spokesperson tells NR Times: “Many of our people are around the world and they have not been allowed to return home. Certain procedures have been taking longer than usual due to the onset of the virus, but also, customer visits and shipping of products are being disrupted because of the fear of spreading the virus.

“These will ultimately slow down the company’s business,” he adds.

Chroma, a national provider of arts therapies to care patients, has also taken steps to restrict visiting in light of the developing situation, and is working closely with fellow providers in an attempt to map out the way forward.

Daniel Thomas, joint managing director, says: "We are working with other arts therapies organisations

We are doing our utmost to ensure the pace of rehab is not affected

and our professional bodies to ensure a consistent response, which highlights ways in which we can work together to get through the impact of COVID-19.

“We are working with our NHS and private healthcare partners to ensure the delivery of a safe and appropriate level of service, consistent with government advice and updates from each setting.”

Indeed, the recent agreement between the NHS and the nation’s independent hospitals, which will make more beds, ventilators and thousands more staff available to the COVID-19 fight, has also touched the specialist care sector.

When unveiling the new agreement, NHS chief executive Sir Simon Stevens spoke of the NHS “doing everything in its power to expand treatment capacity and is working with partners right across the country to do so”.

Care providers are also being included in this, with PJ Care revealing an approach from a CCG proposing a Mutual Working Agreement, and Chroma saying it “stands ready” to assist further in the national efforts of joint working.

While the new partnership between NHS and private hospitals has seen huge innovation on a national level, equally innovative practice can be introduced locally.

At Askham Community Village, the team quickly devised a plan around rehabilitation, in light of restrictions on movement between the units on site.

“Never was a truer word spoken than ‘necessity breeds invention’,” says director Aliyyah-Begum Nasser.

“Our rehab team have come up with a super plan to ensure residents do not miss out on rehab and do not put themselves at infection risk by moving around site and mixing with outpatients.

“We have moved physio equipment from the gym into each of the specialist units to ensure that residents have access and infection risk is minimised. In some ways this has actually improved the access residents

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have to rehab – every cloud has a silver lining.”

For Fourier Intelligence too, the company’s innovation means it is able to assist patients with rehabilitation they can do independently, without the need for human contact.

“Unfortunately, for some of our patients, our team are unable to carry out treatment in physiotherapy centres or hospitals as it would be dangerous for them,” says the spokesperson.

“For patients who are unable to carry out their therapy treatments in the hospitals or centres, they can benefit from our home devices such as CycleMotus H1 and OT Parvos, which allow the patients to still carry out their daily treatment without leaving the house.”

Similarly, BIS Services, a community-based rehabilitation services provider, is adapting its traditional model to accommodate the challenges presented by Coronavirus.

“We're still out in the community and are putting together a virtual program of cognitive rehabilitation provision that can be delivered with our team and in a group format,” the company says.

“Focus has moved to wellbeing and mental health, alongside retaining functional skills.”

With care companies responding with vigour to the challenges, charities are also taking measures to adapt to the developing situation, although their ability to generate income at such a difficult time poses a separate challenge.

Spinal Research, a charity which funds medical research for effective treatments for paralysis caused by spinal cord injury, says: “Coronavirus is,

One of the biggest challenges is the expected fall in donations

of course, impacting on what we do here, with many colleagues working from home, or in the process of setting up an office at home.

“While this may be an inconvenience, one of the biggest challenges we face is an expected fall in donations. As we operate as a charity, this is a particular concern as people reassess their financial priorities.”

Going forward, as the situation continues to change on a daily basis, operators have expressed a desire for clearer guidance and direction from regulatory bodies.

“We are concerned about the lack of updated information coming from organisations like the CQC, and PHE,” adds Mark Butler from PJ Care.

“We feel, by necessity and despite clear guidance, we have devised a most sensible set of protocols that we believe in good faith will protect our residents, staff, relatives and the whole operation.”

At the law firm Irwin Mitchell, its client liaison managers (CLMs) have been adjusting the way they support people with brain injuries. CLMs, who have nursing, occupational therapy or social worker backgrounds, support seriously injured clients throughout litigation before liability can be established.

They have told NR Times that the period of selfisolation has led to many clients feeling anxious about their financial situation and seeking benefits for the first time.

The team has been signposting clients towards helpful resources and filling in benefits forms for them if and when necessary. Other extra measures have included helping clients to utilise online grocery shopping.

One young female client, meanwhile, was rapidly discharged from a neuro-rehab setting after suffering from a brain bleed at a time when the NHS was, understandably, trying to create bed capacity.

She has a blood disorder and was therefore in the high risk category. The CLM, working remotely, helped to secure funding for the continuation of her therapy and assisted with the discharge plan. This ensured that there was support available, despite her early discharge.

Page 14: The challenges facing charities in the COVID-19 pandemic.

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N EWS

Charities and community rehab groups pull together Brain injury charity UKABIF has asked healthcare authorities to include people with acquired brain injury (ABI) on the list of those most vulnerable and at-risk during the COVID-19 crisis.

It contacted the Department of Health & Social Care, NHS England and the Chief Medical Officer to request that ABI was included on the list of ‘vulnerable’ conditions.

The change would result in the NHS responding to ABI people as high risk and any advice and support through 111 and 999 would be more likely to be treated as a priority.

At the time of writing ABI is not directly referenced by Public Health England as vulnerable (please check online www.gov.uk for subsequent changes).

Currently it outlines: “Chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy”.

Meanwhile, UKABIF has been involved in efforts by the Community Rehabilitation Alliance (CRA) to help organisations involved in community rehab to support each other through the pandemic.

The CRA brings together around 20 charities and healthcare bodies, including the Chartered Society of Physiotherapy, the Royal College of Occupational Therapists, the Stroke Association and the MS Society.

As the COVID-19 crisis deepened, members of the alliance held a conference call and, as well as sharing their insights into managing the challenges of the coronavirus, they came up with a list of actions.

These included the creation of a virtual workspace enabling members of the alliance to share ideas and collaborate during the crisis.

A “self-care hub” is also being developed with useful information for people with long-term conditions, while new community rehab online resources are also being evaluated.

Alliance members also agreed to explore how

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they could work more closely with the fitness industry while social distancing and the lockdown continue.

CRA member ukactive, which aims to improve fitness among the British public, agreed to look into ways of supporting community rehab provision.

Elsewhere, charities have been stepping up their efforts to look after vulnerable people while face-to-face support remains off limits.

The Child Brain Injury Trust has launched a virtual brain injury service for families.

It offers assessments, advice on benefits and funding, parental and sibling support, educational information, legal support and further signposting.

SameYou, the brain injury charity set up by Game of Thrones star Emilia Clarke, has been posting daily ‘Pockets of Calm’ on its social media channels.

They feature tips and stories to help people through this time.

The charity has also launched an emergency response campaign for brain injury and stroke patients. Working with partners Spaulding Rehabilitation Hospital in Boston and UCL in England, it is fundraising to provide new

virtual rehabilitation clinics for brain injury and stroke patients during COVID-19.

On a regional level, Headway Preston and Chorley has been offering regular weekly “friendship calls” over phone. They can be arranged on the same day and time each week and are aimed at lessening the chances of people feeling isolated and lonely.

Individuals affected by have also been doing their bit. Anne Johnston, a former winner of the UKABIF Film Award, has made a film for fellow brain injury survivors on how to survive self isolation during COVID-19 lockdown.

Anne tells viewers: “Here are nine tips so you can learn how to survive self-isolation during coronavirus. As a brain injury warrior, self-isolation has been a big part of my life for two years. I hope these tips help you while we're social distancing.”

Also, Emma Thompson, a physiotherapist from Addenbrookes Hospital in Cambridge, has uploaded a workout video to YouTube to help people with reduced mobility to exercise.

Find this story online for a link to this and other videos and resources mentioned in this article.

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Stroke concerns rise amid COVID-19 fears Concerns are mounting that people across the UK who have a stroke or mini-stroke are not calling 999 amid the coronavirus pandemic.

Stroke charity the Stroke Association fears that thousands of people could be at risk of severe disability, or even strokerelated death, if they don’t respond to stroke symptoms.

And Dr Deb Lowe, NHS national clinical director for stroke, and consultant stroke physician at Wirral University Teaching Hospital, warns: “We’re beginning to see some quite striking reductions in the number of people coming into hospital with the symptoms of stroke. It appears that people aren’t seeking emergency help or going to hospital when they suspect a stroke, possibly due to fear of the virus or not wanting to be a burden on the NHS. “Stroke is a medical emergency and it’s essential that you call 999 straight away if you suspect you or someone around you is having a stroke.

"Our hospitals are equipped and ready to treat stroke patients. Given the emergency changes being made across the NHS, it’s possible that a patient’s treatment or journey might be a bit different while we put measures in place to deal with coronavirus safely. But these are to keep patients and NHS workers safe and the most important thing to remember is to dial 999 if you suspect a stroke.”

Latest figures from Public Health England showed attendance to Emergency Departments in England has dropped by over a third (34.5 per cent) on the same week last year, from 136,669 to 89,584.

Public Health Scotland figures report attendance to emergency departments has dropped by over a third (40.1 per cent) on the same week last year. While figures for emergency admissions aren’t available yet, the charity and senior stroke professionals expect similar declines.

In 2019, there were almost 90,000 strokes in England alone. Meanwhile, almost 21,000

patients were admitted to hospital with a TIA/mini-stroke. The charity warns that any delay in getting help will jeopardise your ability to rebuild your life after stroke.

Juliet Bouverie, chief executive of the Stroke Association, says: “The fear of contracting the virus or feeling like a burden on the NHS might be the main reasons putting people off seeking treatment. But I am reassured that the NHS is well equipped to treat both stroke and coronavirus. The best thing for you and the NHS, is to call 999 and say you, or the person in front of you, is having a stroke.

Assume stroke until told otherwise. Equally concerning is people who experience ministroke and then dismiss it as ‘just a funnyturn’. A mini-stroke is a warning that major stroke is on its way, so you shouldn’t ignore the signs; and you need to seek help.

The stroke charity is highlighting the world-famous stroke acronym, FAST, urging the public to familiarise themselves with the signs and symptoms of a stroke: Face, Arms, Speech and Time (to call an ambulance) – Act FAST. Bouverie says: “By acting FAST and getting access to

world-class treatments, you can help save lives. Acting FAST can also reduce the misery for thousands of stroke survivors and their families and the impact on the NHS associated with stroke, as the UK’s leading cause of adult disability.

Now more than ever, during this pandemic we must remain focused on making and keeping stroke a priority for the UK.” Professor Rustam Al-Shahi Salman, president of the British Association of Stroke Physicians (BASP) and honorary consultant neurologist in Edinburgh, says: “Strokes and mini-strokes are medical emergencies. The quicker many stroke treatments are given, the better. As we say, ‘time is brain.’ So it’s important to recognise the signs of a mini-stroke or stroke and act immediately. In this phase of social distancing during the COVID-19 pandemic, family and friends can do the FAST test on the phone or via video chat. Many stroke services have also adapted to the pandemic rapidly: rather than calling patients with mini-stroke up to a hospital outpatient appointment, they are using phone or video chat to diagnose and recommend treatment for patients.”

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Persevere, adapt and be creative, it’s what we do best Cognitive rehab therapist Natalie Mackenzie on how current challenges are being navigated to protect the most vulnerable people.

Social distancing, stay at home and COVID-19; the hashtags that have dominated our screens for what seems an eternity.

Upon lockdown being announced our first thoughts in community cognitive rehab were; how do we see our clients? How do we practice function? What about goal attainment, orientation training, functional transfer and providing evidence? How do we support staff out there in the field?

There was an urgent requirement to shift focus, almost overnight, in order to support one of the most vulnerable groups in society.

This is a group which relies on specialist support to learn new skills and practice and habituate new tasks, suddenly being asked to move to a completely new way of being supported and living.

There are many that still need a presence in their homes due to complex needs and safety requirements.

But there is also a large proportion of individuals with brain injury who fall out of that category but still require support to enable them to maintain independence – and to move forward in their lives.

They cannot be forgotten; their desires to attain their goals have not changed, nor should they. And it is for these individuals, who thrive on and require structure, routine and repetition, that this interruption is even more disabling. Months, maybe years, of repetition and consolidation have been brought to an abrupt halt. Or have they?

Those of us working in rehabilitation are a resourceful bunch.

Our automatic processes always navigate us towards solutions to problems.

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We are adept at thinking outside the box to come up with innovative and imaginative methods of engaging and motivating clients.

The COVID-19 challenge is another opportunity for us all to get our creative processes flowing yet again.

And what better time to be doing so than when the world is so engrossed in online processing and information gathering, with us all spending more and more time engaging in online activities than we do real life ones?

Now is the time to bring together all the knowledge we have gained from navigating different social media platforms, computerised systems and conference calling options.

The challenge we all face, as we did in our pre-crisis existence, is making it relevant and personalised to the needs of our clients, and how we get the clients on board.

Literally.

The answer? Whatever it takes. Trial and error. There will be glitches, frozen screens, frustration, probable swearing, a lot of late pyjama wearing sessions and a cacophony of ‘No’s'.

But we must persevere, we must be flexible, adjust, adapt and constantly monitor. It is what we always do in rehabilitation.

The most important element is to ensure that individuals living within the uncertainty of life with a brain injury feel safe, and secure that the teams they have built around them can weather this storm, and have their needs at the forefront of their thinking. That these individuals, often burdened with rigidity of thought and concrete behaviours, know that those supporting them will just make it work for

them, however that may be presented.

Wellbeing is top of the list right now. A Skype, Zoom, or Facetime call, albeit not a replacement for face-to-face skill practice has a place, a very important one.

Isolation is not welcome for these individuals, a time when negative thought patterns and behaviours can take over, when rumination becomes the norm and when motivation plummets.

Teams must engage and enable initiation, via even the subtlest methods. Even a text conversation now is a lifeline for many.

Bring groups together, offer peer support, allow individuals to be frustrated, listen to their tirades that they are angry that their favourite food outlet has shut down, or that they can’t workout; this matters.

Individuals will new learn skills and engage in the virtual method of rehabilitation, and it will work, just with some bumps along the way. But is this not how we always expect rehabilitation to be? Service providers and community staff will learn along the way and will build their own toolboxes further.

When this temporary change becomes the new norm, we can then move to focus on the cognitive elements of every activity that we present during tele-sessions.

Every skill and goal that was identified prior, will continue, just with a different slant. We will recover with a new method of delivering services in the community that will only serve to support people with brain injuries even further.

It will take time, but right now we have a lot of that.

Natalie Mackenzie is a cognitive rehab therapist and director of BIS Services.

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Help us to be better and stronger Charities are facing the double-edged sword of demand for their services being at an all-time high, while seeing a vast drop in donations as a result of COVID-19. Here Dalton Leong, chief executive of The Children’s Trust, discusses the vital role of fundraising in supporting charities in the current climate.

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UK charity The Children’s Trust, which supports children with brain injuries and their families, says demand for its services is at the highest point in its 36-year history.

At the same time, however, donations are declining rapidly as people become more cautious amidst economic uncertainty.

And it is not alone, with similar challenges being felt elsewhere in the third sector that supports neuro-rehab.

The charity estimates that hundreds of thousands of pounds in fundraising revenue has been lost in the first quarter of the year alone, through the cancellation of several key events.

It says it needs to raise £7m each year in addition to the public funding it receives, to enable it to offer various services and activities at its residential centre in Tadworth, Surrey and through its community-based work across the UK; and has launched a special fundraising appeal to remind people of the importance of donations and the difference they could make to families, both now and into the future.

Chief executive Dalton Leong says: “While we are very pleased to be able to support the NHS through helping to unblock beds and provide specialist support to children with complex needs - we currently have 17 children who are, by government definition, extremely vulnerable and have to be shielded and this does come at a cost. Like in the NHS, we are struggling to get the right levels of PPE for our team and we estimate we will need 2,500 masks alone every week. Our costs are escalating and donations are absolutely vital.

“Through fundraising, we are able to offer leisure activities, trips, levels of equipment to our children and families that make such a difference to their lives. We are working at the very complex end of needs and what we do is very specialised.

"The levels and frequency of services and therapies we can offer far outweighs what is available in the community. Although we have had to put our social activities on hold and are having to look at making savings where we can, we want to come out of this better and stronger. We will learn a lot from these challenging times.”

While The Children’s Trust remains in strong shape as an organisation - with Dalton using

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his corporate background, which includes 21 years in banking, to operate a lean business model - the clear drop in donations is a concerning feature for charities across the UK, no matter their size or profile.

The situation is one Dalton and his team are approaching with confidence, however.

“We have a model here where we run this organisation as a business, but value people as human beings. We drive through efficiency and effectiveness while never compromising on the service we deliver.

"We are reducing support costs by five per cent year-on-year, which is not easy, but it is important that we put our resources to best use.

Dalton continues: “Only two weeks before the pandemic hit, we unveiled our five-year Hope and Ambition strategy. While clearly things have changed in the world since then, and we

have to accept that some of what is in there will have to be reprioritised and there will be some delay with projects we are planning, we still believe in our strategy and are as committed to delivering it as ever. It is central to our strategy that we demonstrate agility, the ability to adapt to change and innovation.

"A recent example has been the need to bring forward our digital transformation plans, which have been introduced by default through the onset of remote working.

"We have over 200 staff currently working at home, with 400 still on site, but we have used technology to great effect to ensure our staff working remotely keep that connection with Tadworth even though they’re not here.”

While the Government recently unveiled a £750m package of support for charities as part of its coronavirus economic protection measures, Dalton believes this must go

further to ensure the survival of many organisations to enable them to support people during and post COVID-19.

“I think this is a great start from the government, and I’m grateful to them for what they have done, but charities are going to play a really important part in the recovery of this country.

"Charities which are supporting extremely vulnerable children, homeless people, those in poverty, many of them will need significant resources to be able to do the work they’ll need to do. They could be a vital lifeline for so many people and I hope this £750m is just the start,” he says. “The charity sector accounts for millions of pounds in income generation and employs hundreds of thousands of people and is a vital part of the economy.

"Our role can only increase as we come out of the other side of this current situation.”

Respect & Restore Specialist residential care and rehabilitation for adults with acquired brain injuries.

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26/02/2020 20:14

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WE’LL BE SOARING AGAIN SOON Accessible Dreams has been creating life-changing adventures for people with serious injuries for almost a decade. As its defiant director Nicola Cale tells NR Times, it’ll take more than a global pandemic to stop it drawing up plans for more empowering trips in the not-too-distant future.

Two of the most powerful ingredients of Accessible Dreams’ work are the very things that are restricted right now.

Travelling to exciting horizons, and being able to hang out with friends new and old once there, are at the heart of the experiences the group creates.

And at the time of writing, one is currently impossible from the UK, while the other is enabled only in a world of separation, screens and clever apps.

But Nicola Cale, who runs Accessible Dreams, sounds surprisingly chipper when NR Times calls her.

Partly, she’s been bowled over by the enthusiasm and ingenuity shown by people in the group's vast social ecosystem in staying connected and supporting each other. But also, it’s given her a chance to reflect on the importance of the organisation’s work – and she can’t wait to help more clients onto the adventure trail with renewed vigour soon.

Accessible Dreams welcomes people with serious injuries and often complex disabilities into life-

changing overseas experiences, like skiing, surfing and safaris.

Many individuals it works with would otherwise have given up on the possibility of such adventures because of the challenges created by their condition or injury.

In reversing this, magical things can happen.

Nicola, who runs the organisation alongside fellow director William Sargent, says: “Going out and being in a different environment stimulates the brain differently. Being on the mountains, for example, already changes your outlook, so if you have a brain injury or disability and your world’s become a lot smaller, to change your environment is really important. So too are the opportunities to socialise with others in a group which looks beyond disability.

"Making friends with other people who may be struggling with different challenges in life can be empowering and help clients to better deal with their own difficulties.”

Through its annual trips, Accessible Dreams enables

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It's important that we continue to focus on the huge difference travel can make

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people to rediscover, or even discover for the first time, the social benefits of group travel and exploring the world alongside the challenge of the physical activity.

“The main thinking behind it is to show them that life can be good again. While a person might not be able to ski or surf in the same way they used to, we want to help them discover they can still do it.

“We’re not focusing on disability, we’re looking at what we can do, what can be possible. We want to show people that their dream is accessible and make adventures which are often assumed to be beyond reach become reality.”

Coronavirus travel restrictions unfortunately led to the group’s annual safari trip being postponed, although Nicola is hoping surfing can still take place later in the year.

And, with skiing still scheduled for February and March 2021, planning and the search for new opportunities behind the scenes is in full flow.

The three services offered by Accessible Dreams – organised trips, helping people to plan their own holiday and supplying a crew member ‘chaperone’ to join a holiday - are still proving as in-demand as ever.

Despite all future travel being clouded in uncertainty, Nicola believes the current enforced isolation has only galvanised people in their desire to see more of the world.

“I have a theory, I can’t prove it, but it’s a theory of mine, that good brain chemistry can build new neural pathways. If you're stressed and your daily routine is the same all the time, you're not making new connections in your brain, whereas if you're going out doing new things, your senses are heightened.

“So it’s important that we continue to focus on that huge difference travelling can make and look to the future to get our plans back on track for later this year and next year onwards.

“Taking people on holiday, or using our resources and connections to help is absolutely something to look forward to and be excited about.”

Over the course of the many trips organised so far, Nicole has witnessed a steady stream of success stories from people who have fulfilled personal dreams, while changing their outlook on life.

On the most recent skiing trip, which saw 66 people visiting a French ski resort, a man who suffered a brain injury several years ago, which left him with very limited powers of communication, went skiing for the first time since his injury. That huge achievement was compounded by the fact his support worker and friend was also able to join him.

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“This particular guy used to be in the Army and we knew he was an adrenaline junkie before his brain injury. So we arranged for him to ski down the mountain in a sit ski. We found out that his support worker used to be in the military with him, so we arranged for him to go in a sit ski too. That was a special moment. It’s a cliché but you could see him light up, he was visibly brighter in his eyes, and also more upbeat afterwards.

“We also have a blind man who has now been on four ski trips with us and has learned to ski standing up. It’s incredible that he’s learned this new skill.

“That feeling of exhilaration, the speed and perception of danger - even though in reality it’s the safest it could be – has a really special impact on people.”

While the trips are primarily for the benefit of the person with the serious injury or disability, they can be equally important for family members and support workers too, says Nicola.

“You can see sometimes they’re a bit nervous about going on trips, so that’s why we offer the range of services we do, either arranging the holiday, helping to arrange someone’s own holiday, or having someone to send with you. Seeing a loved one being able to ski or surf and seeing the difference that makes to them, can be very emotional.

“I had one lady recently tell me that going on one of our trips with her son helped her to let go a little bit as a mother and to realise that people really did care - and that it was OK for her to take a step back. I thought that was brilliant. Her son also said about travelling as a group, ‘We went as strangers and came back as friends’ and that’s exactly what we want to achieve.

“We see it as building a community of people who have mutual experiences and common loves, and we have set up a WhatsApp group for people who are travelling so they can keep in touch afterwards. That’s been a really nice more recent addition to what we do.”

Each trip organised by Accessible Dreams is meticulously planned according to the bespoke needs of the participants.

“We want to take people to places that are unusual and appealing, but on a practical level, we make sure that whichever adventure we go on, there is a great hospital or medical centre nearby, and of course make sure the resort we go to meets our needs exactly.

“The ski resort in France we visit now knows us. They’ve got great resources, but we’ve also made sure their ski instructors are clued up on brain injury and have taught them about brain injury awareness.

“Also, we add in other aspects which are tailored for the

group, such as having a rest day after a travel day.

These are the sorts of things that package holidays don't really factor in. So we might make a holiday for ten days instead of seven to allow some extra time getting over fatigue.”

Plans are also underway for trips, including those within the UK, that provide a more relaxing alternative to adrenaline-packed holidays. Nicola is also hoping to arrange high-octane day trips as soon as the COVID-19 restrictions are lifted.

“If someone wanted to do a skydive, for example, we could look at that. There are also opportunities for cycling or walking holidays closer to home and we’ve got links to some adapted properties in the UK which could help with that.

“Also, we ran a fantastic ‘sensation’ vacation to France, with some alternative therapists joining us. We had good food, aromatic essential oils and all kinds of other things that indulged the senses of taste, touch and smell. That’s something we could look at doing in the UK once we’re allowed to move around again.”

Accessible Dreams has long been in the business of overcoming seemingly unscalable barriers. It looks like the current crisis will be just another challenge it rises to and ultimately leaves for dust on the road to another adventure.

For more on Accessible Dreams visit www.accessibledreams.co.uk.

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Schools scheme to help ABI approach A new government-backed initiative could help to improve the way acquired brain injury is managed in UK schools.

The UK Department for Education has funded a suite of introductory training videos for newly qualified teachers on inclusive teaching strategies for specific special educational needs and disabilities (SEND).

Topics covered include acquired brain injury, ADHD, autism, Down Syndrome, physical disability, social, emotional and mental

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health needs and speech, language and communication needs.

The UK Acquired Brain Injury Forum (UKABIF) worked with the Department for Education on the project through the National Acquired Brain Injury in Learning and Education Syndicate (NABLES).

Chloe Hayward, executive director of the charity, said: “This project is just one of the many projects NABLES is focussing on to deliver the recommendations detailed in the All-Party Parliamentary Group on ABI

report ‘ABI and Neurorehabilitation – Time for Change’.

“We’re delighted to be able to collaborate with the Department for Education and look forward to seeing positive outcomes for children with brain injuries in the classroom.”

NABLES includes representatives from The Child Brain Injury Trust, The Children’s Trust, The Eden Dora Trust, Sheffield University, UKABIF, Nottingham University Hospitals NHS Trust, the Teaching Schools Council and the House of Lords.

NE W S

Study tests impact of brain training in tackling MS problems A new study has evaluated the value of cognitive rehabilitation in addressing the thinking problems experienced by some people with MS. Around half of all people with MS have difficulties at some time with aspects of thinking such as memory, concentration or problem solving, known as cognitive problems.

In this study, (Lincoln, Bradshaw, Constantinescu et al, 2020) a programme designed to improve cognitive skills (CRAMMS) was tested in a large clinical trial.

A total of 449 people were recruited from five MS centres in England.

Just over half were assigned to the cognitive rehabilitation programme (CR group) and the remaining 204 received standard advice on how to manage cognitive difficulties from an MS nurse or occupational therapist (SA group).

A trainee psychologist presented the cognitive rehabilitation programme to groups of four to six participants who met weekly for 10 sessions.

The sessions covered techniques and exercises to retrain cognitive skills and taught practical ways to cope with memory issues in daily life.

Participants and a partner or friend were asked to complete a number of questionnaires at the beginning of the study, and at six months and 12 months.

The main measure for the effectiveness of the programme was the psychological impact of MS on quality of life at 12 months.

To get a standardised measure of concentration, planning and memory, participants also completed a set of cognitive tests at the beginning of the study, and at 6 and 12 months.

There was no difference in psychological impact of MS between the two groups at 12 months.

However, there was a small improvement in

psychological impact of MS for the CR group at 6 months.

Other measures showed some improvements; at 6 and 12 months, those in the CR group reported fewer memory problems in day to day life (as reported by both participants as well as relatives) and better mood. There were no differences in cognitive tests, levels of fatigue, employment status or stress experienced by carers at both 6 and 12 months.

The researchers questioned whether quality of life was appropriate as the main measure of effectiveness.

Quality of life is complex and influenced by many factors; it may be unrealistic to expect

to achieve a measurable improvement from a treatment which focuses on a single aspect of MS. They recommend that future studies of cognitive rehabilitation use measures which more directly assess the impact of cognitive ability in daily life.

The researchers conclude that the results support providing cognitive rehabilitation, given the short-term improvements and the lack of alternative, more effective, treatments.

They also suggest that future studies should consider how improvements can be maintained and whether or not some people benefit more than others.

Read more on overcoming the challenges of living with MS on p30.

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High rollers lead the way in developing new MND tech Rolls-Royce has created new Artificial Intelligence (AI) technology that will allow people with motor neurone disease (MND) to have a conversation in their own voice, even after they have lost the ability to speak.

Rolls-Royce and its data technology arm, R2 Data Labs, has partnered with the Motor Neurone Disease Association and some of the world’s leading technology companies, including Accenture, Computacenter, Dell Technologies, Intel and Microsoft, to pool technology and expertise to improve the lives of those living with extreme disabilities.

For the first time, those living with MND will be able to have a conversation through a computer using their own voice, words, colloquialisms and accent, without pausing to type answers or being restricted to a prescribed set of words. The new technology, called Quips, uses voice-banking and AI to learn a person’s unique language style and use it in conversation.

Communication is one of the most difficult aspects of living with motor neurone disease, which affects around 400,000 of the world’s population and kills more than 100,000 people every year.

Nick Goldup, director of care improvement for the MND Association, said: “MND affects the nerves in the brain and spinal cord which tell muscles what to do. As the disease progresses people lose the ability to move, eat, speak and eventually to breathe.

The technology available to help people communicate has changed little in the recent past – most people will be familiar with Professor Stephen Hawking’s computerised voice which he programmed using his eyes.

This technology will allow people living with MND to communicate closer to ‘real time’ than they can with existing technology.”

Quips is in its early stages, but Rolls-Royce is aiming for it to be implemented into some of the leading augmented and alternative communication packages that already exist, such as those used by the late Professor

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Stephen Hawking. Currently, users type what they want to say, and the words or phrases are read out, often in a computerised voice.

Quips listens to the conversation, suggesting words and phrases that the user is likely to want to say, based on its understanding of their previous conversations. The user can quickly select sentences and they are read out in their own voice instantly, with their own accent and local colloquialisms, without gaps for typing. It even includes slang and can adapt to different situations and people, such as work, home, or even the pub.

Goldup said: “Having your voice stripped away is one of the most brutal aspects of MND. Technology that allows people to retain those things that make them unique – their voice, speech patterns, intonations and word choices – is a huge leap forward

in enabling someone to retain their dignity and their sense of self. This is really exciting technology – and of course its potential use expands much further than just people with MND.” Stuart Moss, an IT Innovation strategist at Rolls-Royce, lost his father to MND on Christmas Day 2014. He started the Next Generation Think Tank earlier this year, alongside the Motor Neurone Disease Association.

Stuart said: “Those with MND are often robbed of their ability to communicate with their loved ones, which can make the festive season particularly lonely and difficult. This technology will give people their voice back and is the first step in what I hope will be many innovations to come from the Next Generation Think Tank.”

NE W S

Children’s concussion test could be a game-changer Trials have begun on a new test kit which could rapidly diagnose concussion in children and adolescents.

Finnish company Medicortex Finland Oy has started trials on its diagnostic kit – which it is hoped will improve the tools available in the detection of brain injuries that show no symptoms.

The trials will take place at Satasairaala hospital in Finland in the coming months – coronavirus permitting.

Dr Marten Kvist, medical director of Medicortex Finland Oy, said: “A diagnostic kit for rapid detection of mild TBI in children is truly important. It will satisfy the urgent need to improve the detection of brain injury

in children who suffered a head injury” The rapid diagnostic kit ProbTBI helps to diagnose brain injury especially in patients who don’t show visible symptoms of brain damage – which is frequently the case with concussion and mild injury.

The clinical trial will see body fluid samples collected from patients ranging from babies to 17-year-olds with suspected mild TBI. The samples will be studied with respect to a specific biomarker signature following a head injury. Principal investigator, Dr Sari Malmi, head of the department of paediatric surgery, said that a new test for improving the diagnosis of traumatic brain injury would help to improve the quality of treatments.

Dr Adrian Harel, CEO of Medicortex, added: “Children in particular will benefit from it since they can be refrained from radiation or sedation which are needed for the CT scan of the head, as well as from an exposure to other sick patients in the hospital.

“Participation of the young patients shortly after a head injury will be a challenge, but we have a committed and skilled clinical team working for us in the hospital.”

Medicortex Finland Oy is a biotechnology company which aims to improve the diagnostics and treatment of TBI. It has developed technology to capture biomarkers from urine and saliva – which can form the basis of affordable diagnostic tools.

Since the trial was publicised, Finland has announced a state of emergency over the new coronavirus.

NR Times has not been able to confirm with Medicortex how this will affect the progress of the trial.

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Immune cells could hold key to TBI treatment A study into immune cells has presented a potential avenue towards new traumatic brain injury treatments.

Targeting overactive immune cells and dampening their chronic neurotoxic effects may offer new therapeutic strategies for traumatic brain injury (TBI), according to new preclinical research in mice.

The research involves scientists at the University of Maryland School of Medicine, Baltimore, and Trinity College Dublin.

It suggests the impact of TBI on brain degeneration may be modifiable a relatively long time after the injury was sustained – something at odds with current thinking.

Triggered by trauma, microglia – the brain’s immune cells – morph into an inflammatory state, which helps to protect the brain.

However, long-term inflammation after TBI may contribute to neurological

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degeneration and cognitive declines similar to those observed in TBI-associated neurodegenerative diseases, such as chronic traumatic encephalopathy and Alzheimer’s disease.

The scientists involved in the new study found that highly delayed targeting of chronic inflammation pathways may be a very effective therapeutic strategy for TBI. One month after a TBI, the team inhibited a particular receptor microglia need to survive. The inhibition killed 95 per cent of the mice microglia cells. However, the cells bounced back to normal levels once the inhibition ended.

The researchers then stopped the inhibition after one week and let the mice recover for a few months. They found that the inhibition essentially “reset” the mice’s microglia: the new cells were in a more

normal, less inflammatory state. The mice recovered better than the mice that didn’t receive treatment, showing less brain damage, fewer neuron deaths, and better motor and cognitive performance.

David Loane, research assistant professor in Trinity’s School of Biochemistry and Immunology, said: “These preclinical studies suggest that the consequences of TBI on brain degeneration and related neurological impairment may be modifiable quite a long time after injury by targeting inflammation pathways, which is a finding at odds with widely accepted views about head injury.

“The exciting thing is the possibility that we may one day be able to minimise brain degeneration and neurological impairment in people who have suffered a TBI. “It will of course always be incredibly important to act quickly whenever someone suffers a TBI, but our findings suggest targeting inflammation pathways further down the treatment line may make a major difference to long-term brain health and recovery.”

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Mental health and spinal injury breakthrough Scientists have discovered potential links between gut health and anxious behaviour after spinal injury.

They believe the digestive tract could help explain the link between spinal injuries and changes in mental health, such as increased anxiety and depression.

University of Alberta researchers found that rats with spinal injuries experienced changes to their gut bacteria and a rise in anxiety-like behaviour.

But when rats with spinal injuries were given faecal transplants from healthy rats, their behaviour, and gut bacteria, remained normal. The findings suggests that ‘bacteriotherapy’, through some form of "poop pills" could one day be used to improve wellbeing following spinal cord injuries and diseases of the central nervous system.

Physical therapy researcher Karim Fouad, who led the study, said: "I think it has huge potential. The beauty of it is that if this translates to humans, we'd have a simple tool that could potentially improve mental health."

Researchers have long observed a deterioration of mental health following spinal cord injuries. Patients who experience paralysis are at an increased risk of suicide.

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The increased prevalence of depression also means patients often miss their best window for recovery by losing interest in rehab, Fouad said, leading to a worse quality of life.

Connections between poor intestinal health and mental state have also been found outside of spinal cord research.

Research at the University of Alberta has also pointed to how gut health could help explain a disease like multiple sclerosis.

Fouad decided to test for similar connections on spinal cord injuries. When rats received minor spinal cord injuries, he observed a dramatic change in gut flora.

It took up to four weeks for digestive tracts to return to normal.

To test anxiety-like behaviour, Fouad and his team also observed the rats on an elevated plus maze, a widely used test for assessing the anti-anxiety effects of pharmacological agents. It involves gauging the rodents' willingness to risk venturing onto an exposed platform.

Three weeks after recovery, injured rats remained far more reluctant to overcome their natural aversion to open spaces than the typical rats.

The next part of the experiment flipped those findings upside down. Some of the

injured rats were given a faecal transplant.

They made an astonishing recovery, becoming even more willing to venture out on the exposed platform.

"It's dramatic," said Fouad. "Diseases and injuries seem to trigger changes of the microbiome, and this can have much further effects."

Fouad hopes to test the effectiveness of faecal transplants over time, and to see whether anxiety could be induced simply by adding the wrong gut bacteria to animals raised in sterile environments.

He said there could be wider implications for these findings. Scientists often house animals together in experiments.

But since rats are notorious omnivores - known to eat the faeces of other rats researchers may have inadvertently skewed thousands of experiments in which gut health was a potential modifying factor.

"How many generations of experiments have been done where microbiome changes were a potential influence and animals were eating the poo and maybe negating the effect?" Fouad said. "That's a scary thought."

Faecal transplants might not have the same allure as stem cells for spinal cord patients, Fouad said, but for patients facing a condition in which incremental gains can make a pivotal difference, poop pills could make a big difference.

"Is it going to cure spinal injury? No," he said. "But if you're in a wheelchair and dealing with it in a good mindset, it could make a big difference."

T E C HNO LO GY

Gripping solutions improve rehabilitation and offer greater independence Established in 2007, The Active Hands Company Ltd is the ‘go to’ place for those with reduced hand function.

Making their own range of gripping aids, as well as stocking the most effective and innovative products from other companies, Active Hands provides gripping solutions for all aspects of daily living. Their mission is simple: to enable people from a wide spectrum of disabilities to lead active, fulfilled lives, with as much independence as possible.

Meeting the rehabilitation needs of those with complex disabilities can be challenging; especially when reduced grip is limiting the activities accessible to them. Active Hands’ range of carefully designed, high quality gripping aids are ideal for use during rehabilitation and beyond.

The General Purpose gripping aid is a versatile aid, ideal for beginning to lift bars or ropes during rehabilitation, but strong enough to cope with lifting heavy free weights in the gym. The ‘gym’ range also includes D-ring aids, which attach to the karabiner of pulley machines, ensuring a secure and safe pull directly from the wrist. It also includes the Looped Exercise aids, which slide over bar ends of ‘pull down’ or rowing machines. To offer users a full range of gripping aids, and consequently a varied and challenging workout, a Gym Pack is also available, containing a selection of the most popular gripping aids at a reduced price.

Active Hands’ gripping aids support and enhance independence in many different activities. From DIY and kitchen tasks, to aspects of personal care. Their Small Item gripping aid, for example, enables users to position small items in their palm and ‘grip’ securely and comfortably. Users can apply make-up, use a toothbrush or razor or even paint or play drums thanks to its unique and innovative design.

Alongside the gripping aids developed ‘in house’, Active Hands also source the most effective solutions from other companies to enable greater independence across all areas of daily living. Whether users are looking to ‘get a grip’ on

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their own personal care, pursue a hobby or are heading back to work, there are tools to support them. From ‘Zubits’ and ‘Zip Grips’ to enable independent dressing, to cutlery with adjustable loops to support eating. More hi-tech solutions include a lightweight, no-grip reacher/ grabber and ‘Glassouse’ a wearable mouse with a range of switches to suit varying levels of ability.

To find the full range of gripping solutions, visit the website at activehands.com.

CASE STUDY: STROKE SURVIVOR, JOSE MALDONADO

Following an intra-cerebral haemorrhage in 2002, Jose experienced loss of function in all four limbs.

Determined to regain his independence, Jose committed to a full program of rehabilitation. However, his ability to regain upper limb strength was severely limited by his lack of grip. Twelve years post-stroke, he discovered Active Hands gripping aids and was finally able to exercise in a way that enabled him to reach his full potential. He has since made use of the gym daily and is leading a full and active life, working alongside stroke support groups and sharing his story to encourage others.

CASE STUDY: SCI PATIENT, BEN CLARK

A professional swimmer prior to his SCI, Ben was keen to quickly regain strength and independence through his rehabilitation. Active Hands gripping aids were, and continue to be, instrumental in his ability to be active.

Ten years on from his injury, Ben is a qualified personal trainer and runs his own YouTube channel, dedicated to adapting workouts for those with a disability. He uses many of the Active Hands gripping aids to enable his workouts to be varied, challenging and to reach his physical potential.

Why not take advantage of a discount, exclusive to NR Times readers: 10% off everything until the end of May. Just type NRTIMES10 at checkout.

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Sowing seeds and growing services A year in the life of a new rehab hospital

A new male neuropsychiatric facility was launched in the UK last year, amid a national shortage of such services. Twelve months on, we visited Cygnet St William’s in Darlington to chart the ups and downs of getting the service going. As Andrew Mernin reports, it’s a tale of hard-won relationships, fire-fighting and people power.

Good vibrations are bouncing around the communal room at Cygnet St William’s when NR Times arrives.

Partly, it’s down to the surprisingly large quantity of cakes on offer.

A local Headway representative is already tucking in, as is Paul, a friendly patient with a beaming smile.

Manager Alison King and consultant psychiatrist Dr Tony Perini are also in good spirits. But it’s perhaps not just the iced treats fuelling their positivity.

It could also stem from their satisfaction at the progress the facility has made after a year of hard work.

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Cygnet St William’s is a 12-bed purpose-built facility for male neuropsychiatric patients in Darlington, North East England. It has a UK-wide reach, helping to ease pressure on the UK’s neuro-rehab infrastructure. As the acquired brain injury (ABI) all party parliamentary group report ‘Time for Change’ sets out, neuro-rehab beds across the board are in short supply – with 300,000 ABIs per year versus just 4,600 beds. More than three times that are needed to meet demand.

Despite working in the care sector since 1982, Alison says she’s learned a lot of lessons over the last year.

“One of them is that you can do all the planning you want for the important aspects, and have all the expertise on board, and then a fire that means you have to evacuate can put a spanner in the works. There are so many things you can never account for when you're setting up a new service and you just have to overcome them as they arise.”

The fire, from an adjacent property, came just a few weeks after its first residents were welcomed. Thankfully no harm and little damage was done.

The hospital takes referrals of men affected by brain injuries and neurological conditions where challenging behaviour is the leading impairment.

They may have been detained under the Mental Health Act and have a forensic history.

Presenting comorbidities could include psychiatric disorders including psychoses, complex epilepsy, post-ictal psychosis and organic personality disorder.

For Tony, a standout challenge has been in establishing credentials to build vital relationships with CCGs. “It’s not easy but if you've got the right ethos and the right sort of attitude and you're doing what you say you're doing, then you can gradually become a provider of choice.

You’ve got to prove yourself as a new service, and initially may be tested on the most complex cases that others have declined to take on. It’s about making sure CCGs understand exactly what we do.”

The service is part of Cygnet Health Care, one of the UK's largest independent providers of inpatient and residential mental health care. Having assembled a well experienced interdisciplinary team, a crucial achievement has been the forming of relationships with GPs. Alison says: “Getting the GP service on board was difficult initially. Our patients weren’t registered with GPs and so we had to work with the CCG to show the benefits of our patients being with a local GP, albeit on a temporary basis, and that took us a long time to get it worked out.

“We had to give them an understanding of what we are about and what we will provide. We arrange a lot of the appropriate medications ourselves, so we don’t require them from the GPs, but anything we do need, they’ll prescribe it and we’ll buy it ourselves.”

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Tony says: “We all want to do the best for our patients and get the best out of the system and resources available to us that we can, so we are all working from a common place.

“We now have a good relationship with our local NHS colleagues and we've had dealings with the local hospital quite a bit. Establishing a relationship with primary care is very important because we are taking on individuals who potentially could have a quite rapid deterioration. Some are into their 80s and may get physical illnesses, which GPs are much better at diagnosing than psychiatrists with a few years away from general medicine. Without GP input, the risk is that you might either under react and miss things, or over react and over treat. So we are very pleased to have primary care there to advise us.”

Being transparent and accepting of scrutiny has been integral in forming vital links with other members of the healthcare ecosystem, meanwhile.

Alison says: “It helps that we invite external professionals in to have a look around and see what we're doing here and how well it's working."

Tony adds: “A big part of us proving our credentials has been our policy of being open and honest. If we haven’t done something, or if something could have been done better, we will say so, and say ‘we’ve already identified this and it’s something we are going to address’.

“As an independent facility, you are under close scrutiny from the Care Quality Commission, but we are rightly also scrutinised by care managers and case managers because these are very complex cases we are working on. So we have regular meetings with them, and very clear targets from them which we have to deliver.

"Contracting based on outcomes is good for them and for us in setting out what is realistic and what is ideal.”

On staffing, Alison says: “We discovered with the patients we had at first that individual’s needs were higher than expected. For example, we had more cases with physical complexities than we had factored into our planning. So we had to adapt to that by adding extra support and nursing staff.”

With new patients now being referred on an ongoing basis, to add to some of the unit’s longer-term residents the longest duration for a resident to date has been eight months - the centre continues to grow its reputation.

Onsite, Alison has worked hard to establish a close-knit team with no bureaucracy and everyone encouraged to voice concerns. This approach, says Tony, enables them to deliver the best service to patients.

We had to give them an understanding of what we are about

“We have genuine respect for each other here and we all want to strive to do the best for our patients. If this comes from the top downwards, it creates a good place to be.

We want to be the best we can be – and I think Alison has managed to build the foundations for that in a very short period of time. Also, in the wider Cygnet group, the training is very good. Some is e-learning and some face to face, often at quite a large cost to the company. But it’s something we are all benefitting from. We want to retain staff and support them in their development.”

As part of the facility’s ongoing progress, plans are underway to better support patients approaching discharge back into the community.

Alison says: “We are just acquiring the building at present, but the plan is to create a three-bedroom transitional unit where individuals go from being in the existing centre. As they move towards leaving us, it will be a stepping stone for them to live more independently, living with support workers. It will be close to the existing building and we hope to get work underway this year.”

Further developments include the addition of a wider range of therapies, with music therapy and visits from animals among several new interventions being introduced.

Alison is particularly excited about the animals.

“I saw the impact they could have when I used to work with elderly patients,” she says.

“We managed to find a local farm which can bring ponies in and they can visit the bedrooms – even going up in our lift up to the rooms on the first floor. Some of the patients we have here have lived around animals for a lot of their lives and it’s hard when you aren’t around animals anymore. Seeing animals can help to bring a bit of normality back. They have a very calming impact, and people’s eyes light up when they see them.”

Tony adds: “We’re always looking at things which will benefit our patients and have worked hard on creating the right setting. It’s is a great foundation from which we can build further.”

For more on Cygnet St William’s visit: www.cygnethealth.co.uk.

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INTERVIE W

I kept my MS diagnosis secret, until I realised the power of talking about it Podcaster and campaigner Jessie Ace turned her diagnosis of a chronic illness at 22 into a positive, by supporting and inspiring people around the world. Deborah Johnson reports

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t’s not the cards you’re dealt that matters, it’s how you play them that counts.”

For Jessie Ace, this is a mantra that inspires her every day. It has helped her overcome her career dreams and confidence being shattered by her multiple sclerosis (MS) diagnosis, and underpins the positivity that now enables her to inspire so many others with chronic illness around the world.

Through her DISabled to ENabled podcast, Jessie has built a global following of people who turn to her for inspiration, after turning around her life and outlook since being told she had MS at 22.

When the news was delivered, she had just graduated from university, was embarking on a career as an illustrator and had even clinched a book deal.

“I suddenly felt I had lost my purpose,” she says. “I had a degree that meant nothing, the business I’d spent two years painstakingly building up was gone, and I couldn’t be an illustrator which was my dream and what I had loved doing since I was a little girl.

“At first I woke up one morning paralysed down my left side, completely out of the blue, but then later I lost use of my right hand too. It was the worst time of my life. As a student, I had these ideas that great things were going to happen, but then it was all over.”

Then came the bewildering search for answers.

“The worst part was not knowing where to turn, or who to turn to. The lack of information about MS in general was really bad, but there was nothing for young people, nothing for a young person to relate to who had just been given this devastating news. I knew nothing about MS and the doctor who gave me my diagnosis just told me to Google it.

“There wasn’t even a leaflet, or any advice, recommendations on who to speak to, nothing. As you can imagine, I found every negative story there was through my searches online and it was very scary.”

Finding other young people experiencing what she was going through also seemed impossible.

“There are local MS support groups out there, but that did not feel like the place for a 22-year-old to be.

Everyone else there was much further along in their MS journey, people were in their 50s and some were in wheelchairs, and the outlook immediately became really scary. The idea of what I thought my future would be really freaked me out and I became really depressed about it.”

Determined to get on with her life, Jessie took a job

as a glass collector in a local club, then went back to university as a student ambassador, before finding a job as a graphic designer in fashion. But all the while, she kept her MS totally to herself.

“I didn’t tell anyone. You would look at me and think there’s nothing wrong with me as I don’t look ill. That is the thing with hidden illnesses like mine. I didn’t want to be pitied, or for people to make judgements, or to say ‘don’t lift that chair’. I just wanted to be me.

“I realised that the five people closest to you can shape your outlook and those around me gave me the support I needed. When you have a bad day, to have people close to you telling you that you can do this, you can get through it, tomorrow will be better, is so important. I also came across a book called ‘The Miracle Morning’, which helped me to build a positive mindset. My whole perspective on life began to shift.”

Spurred on by her wish to help support young people in her position, and with her new-found positive approach, Jessie began to share her experiences online.

“The way I got started building my confidence was by sharing my story on Facebook Live videos about four years after my diagnosis, while working on a wedding business. I’d never told anyone really about my diagnosis, so that was a scary thing for me.

“I mentioned on a video one day that I had MS and the response astounded me. Brides-to-be started asking for my advice for how they could navigate their wedding day with an invisible illness, how they could ‘pretty up’ their wheelchair or even how they could disguise their oxygen tank into their wedding dress.

“Before I knew it, people began reaching out to tell me about their illnesses. They said they had not shared their stories with anyone before, because they thought people wouldn’t get it. It gave me an opportunity to help others and helped me come to terms with my own illnesses.

“That was when I realised that my story was bigger than me and that my experiences could help people.”

From there, Jessie’s podcast was born, alongside

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INTERVIE W

Listen to Jessie’s podcasts at https://mmini.me/dtepodcast.

Her book and planner will also be available via the website https://mmini.me/blog following its launch in April.

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a Facebook group inspirationally-titled ENabled Warriors, which helps newly diagnosed people and provides a forum for those who don’t feel like they fit in with traditional groups.

Through its uplifting approach, thought-provoking content and often celebrity guests, the DISabled to ENabled podcast has become a hugely popular outlet for people young and old, with a loyal and growing following across the world.

“It absolutely makes my day to hear from someone that the podcast has helped them. I have been where many of them are, where they feel it is the end of everything, but sometimes it is just knowing that someone understands, and is there, that can make all the difference. Most podcasts like this are American, and I know a lot of people like that we are in the UK. “Changing the support available for young people with MS is something I feel very strongly about, and we do have a lot of young people who interact with us, but also a lot of older people too. I think for older people they perhaps haven’t had the chance to access something like this, so I know it has been welcomed. I want to help people have the confidence and the voice to share their experiences and their stories in the right way, as I know from my own experience how much this can help.”

Jessie, 29, is also teaching people how to make their own podcasts and plans to create a course which helps people to express themselves through writing, social media and the global online community.

She is also about to launch a book for people to use

as a diary and planner, to keep a record of relevant information for themselves and medical professionals.

“I’ve created this for people to keep track of how they feel, their medication, hydration and the exercise they’ve done and there are daily sheets to complete.

This can be really valuable to take to hospital appointments or your healthcare practitioner, instead of having to remember what you did on this specific date, you can have a record of it. It will hopefully lead to more productive appointments and outcomes,” she says.

“I have also taken inspiration from the book that helped me so much, The Miracle Morning. You can visualise how you want your day to go and the person you want to be.

"There are a series of ‘I am’ statements which can help shape your whole outlook for the day - to keep in mind that ‘I am confident’ or ‘I am full of energy’ can help you adapt mentality and give you a renewed focus, instead of thinking you are tired or today isn’t quite what you’d hoped.”

Having established herself as a prominent MS campaigner, Jessie has also become a writer and illustrator - reviving the dream she thought was lost for many of the world’s biggest MS charities including the National MS Society, MS Society UK, Shift.MS and MS-UK. She has also illustrated for Momentum magazine, MS Matters and New Pathways. From the dark days of her diagnosis, for Jessie, the future is full of positivity.

“When I was first diagnosed, I didn’t cope. I believed my life was gone. But now, it does feel great to be able to share my experiences with people who are just as scared as I was, and show them there is a way through, you can do this.

“Anyone who knows me will tell you I love quotes, and one that really resonates is ‘It’s not the cards you’re dealt that matters, it’s how you play them that counts.’

I think that’s really important.

“Having MS is not the end of anything, although it may seem it, and you are still capable of doing absolutely anything in life. Sometimes you just have to be a little more creative to learn how to do it. Once you get past that, don’t take ‘no’ for an answer. Never let anything stop you from what you want to do.”

L E GA L Sponsored feature

Neurologic Music Therapy in medico-legal cases Irwin Mitchell has been working with Chiltern Music Therapy, neurologic music therapy (NMT) experts for the medico-legal sector, for several years. Here NR Times sets out the context for this partnership with reference to an adult client for whom NMT has been especially life-changing.

Recent advances in neuroimaging and neuroscience mean we are now able to better understand how music and auditory stimulation are processed in the brain.

To date, research has shown that nothing else stimulates so many areas of the brain simultaneously, as music. This makes it a particularly unique tool for rehabilitation as new neural networks can be built around areas damaged by disease or injury.

This reinforces the strong evidence-base for using music to improve client outcomes, assist with rehabilitation and support adaptation to injury. It is this principle on which standardised clinical techniques within Neurologic Music Therapy have been researched and developed.

The use and application of relevant NMT techniques gives clients with brain injury the best opportunity to respond and, in medico-legal cases, this has significant implications when assessing both cognitive capacity and rehabilitation potential.

Shamsa* *name changed to protect anonymity

In 2015, Shamsa sustained a serious traumatic brain injury (TBI) following a motor vehicle accident where she was a pedestrian.

To help with determining future needs, she was referred for an NMT assessment. This involved four clinical sessions where a range of NMT cognitive, speech and language and sensorimotor techniques were explored. Ongoing sessions were then agreed and arranged in blocks, with regular reviewing of outcomes now occurring throughout this intervention.

During initial assessment, no vocal or verbal responses were elicited. Observed non-verbal communication included direct eye contact and a range of gestural responses. Other purposeful responses included active engagement with a range of live and virtual instruments made physically accessible by directly facilitating/positioning as appropriate.

As well as joint interaction, these activities also provided a suitable context to assess wider communication skills such as initiating. Communication goals following assessment focused on the further development of non-verbal social skills and, in collaboration with speech and language therapy, a more focused exploration on respiratory control and potential oral motor/vocal responses. At the point of referral, she was unable to stand or walk independently and required the use

She has made incredible gains in her rehabilitation of a wheelchair. Assessment focused on targeted fine motor activities, with a view to developing control to activate adaptive switches for functional communication and to further assess the potential of foot movement to be used for interaction and/or support activities of daily living. Cognitive activities focused on increasing awareness of her neglected left side, assessing sustained attention and executive function skills, and identifying effective strategies to support reliable choicemaking. Since 2016 Shamsa has made incredible gains in her rehabilitation through NMT. Her communication has progressed from spontaneously mouthing along to simple words during native Middle Eastern songs, to developing respiratory control using accessible blown instruments, vocalising, and now engaging in melodic intonation therapy to produce simple functional phrases to express her needs. Her motor function has progressed through a range of targeted movements using sensorimotor techniques in joint-work with physio and OT to now be able to walk with her carer to the local shop while choosing her shopping items, showing a growing development in both her communication and executive function skills.

For more on Irwin Mitchell see www.irwinmitchell.com.

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CLINICAL P R ACTI CE

APATHY TO TREAT OR NOT TO TREAT

Dr Tim Howard, consultant neuropsychiatrist at Elysium Neurological, updates on the treatment of cognitive problems with cognitive-enhancing drugs.

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C L INICA L PRACT IC E

All patients demonstrated reduced information processing speed and increased apathy

C

*Reference: Stratifying drug treatment of cognitive impairments after traumatic brain injury using neuroimaging.

Peter O Jenkins et al (2019)

ognitive problems arising from brain injury are common, frequently persistent, usually disabling and sometimes hidden.

They include impairments of attention, memory and executive functioning.

The keystones of treatment comprise cognitive rehabilitation together with adaptive processes and technology.

In some cases cognitive problems improve following treatment with cognition-enhancing drugs.

Treatment response to cognitive enhancing drugs can be very difficult to predict given the multiple ways by which the brain can be damaged and the different levels and places at which damage can occur.

What comes next relates to the investigation and treatment of impaired information processing and motivation following traumatic brain injury (TBI).

We know that ascending nerve cell pathways which rely on the neurotransmitter dopamine for their effectiveness are frequently damaged in TBI and that the resultant hypodopaminergic state is associated with problems in processing information and in maintaining motivation. We also know that treatment with Methylphenidate, a drug which enhances the action of dopamine and whose effects in ADHD are now well understood, may in some instances improve attention, concentration and executive function after TBI. We cannot reliably predict who will and who will not respond to Methylphenidate. This has led to both scepticism on the part of some doctors as to the effectiveness of Methylphenidate as a cognitive enhancer and to a significant number of studies in which its effectiveness has not been confirmed.

But help may be on hand.

A well designed study* from Dr Peter Jenkins and his colleagues at Imperial College uses I-ioflupane SPECT scanning to examine dopamine transporter binding

in the caudate nucleus and thereby the integrity of dopaminergic systems in patients following brain injury. They compared 40 patients with moderate to severe brain injury with 20 healthy age and gendermatched controls on a variety of neuropsychological and neuroimaging parameters.

They then carried out a randomised, double-blind, placebo-controlled crossover study of Methylphenidate at a dose of 0.3mg/kg twice a day versus placebo within the patient group.

All of the TBI patients demonstrated reduced information processing speed and increased apathy in comparison to controls.

There was a significant response to Methylphenidate in terms of improved information processing speed and improved apathy in those patients with reduced dopamine transporter binding but not in those with normal binding.

These findings are important for two reasons.

Firstly because they increase our understanding of why Methylphenidate is effective in some patients and not others and secondly because it offers the possibility of a treatment-response predictive test for the future.

In the words of the author “this shows that identifying patients with a hypodopaminergic state after traumatic brain injury can help stratify the choice of cognitive enhancing therapy�.

The study has limits. The treatment period is only of two weeks duration and no provision was made to see if those patients who responded continued to respond over time. It did not establish a clear protocol for identifying a level of hypodopaminergicity that could be confidently used to decide whether or not to treat at this point in time. Further work is needed.

I-ioflupane SPECT is currently used in the NHS in the diagnosis of Parkinson’s Disease, Parkinson-Plus Syndromes and occasionally in the diagnosis of Lewy Body Dementia. It is safe and largely free from adverse effects. But it is a relatively costly investigation and it requires a cooperative patient.

Whilst it is unlikely to become a routine investigation in the future, neuropsychiatrists may find themselves requesting it in situations where there is doubt or scepticism as to the potential benefits of treatment with Methylphenidate.

Dr Tim Howard is a consultant neuropsychiatrist for Elysium Neurological, working at the Avalon Centre in Swindon.

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INSIGH T

Changes in personality following traumatic brain injuries (TBIs) are often more problematic than neurocognitive, functional deficits or even physical disabilities. Dr Grzegorz Grzegorzak, consultant neuropsychiatrist at St Peter’s Hospital, South Wales, explains why taking a neurobehavioural approach to treating TBI can be highly effective.

The role of neurobehavioural rehabilitation in management of aggression following TBI Personality changes are sometimes referred to as neurobehavioural disability (ND), especially when associated with social difficulties.

The concept of ND involves impairments of numerous aspects of functioning including the abilities to selfmonitor and self-regulate, to control frustration, anger and aggression, to tolerate delay in gratification, and to self-motivate.

These impairments can lead to a sense of being overwhelmed when facing situations requiring control and management of internal impulses or coping with social situations or tasks.

Impulsivity, disinhibition and aggression all have significant potential to interfere with rehabilitation efforts, jeopardize recovery and become a major obstacle to successful functioning in social roles.

Research estimates the prevalence of aggression in

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survivors of TBI as being as high as 33.7 per cent.

Addressing aggression as soon as it arises is critical to the individual’s recovery.

Sometimes aggressive behaviour is so intense and frequent that its management takes priority over all other aspects of care and rehabilitation.

Neurobehavioural rehabilitation (NR) was introduced in the late 1970‘s as an attempt to improve functional abilities of TBI patients.

NR stems from recognising that people who survive TBI can still learn new skills to self-regulate and to modify their behaviour.

The basis of NR is embedded in learning theory and thus the success of NR is reliant on the patient’s ability to make use of new information and experiences.

Therefore, NR is only suitable for the post-acute

INS IG HT

phase of recovery from TBI, and in fact is intended as a medium to long term rehabilitation programme.

NR interventions are composed of comprehensive and multidisciplinary efforts to create a user-friendly, supportive and encouraging social environment which facilitates therapeutic interactions and activities.

Specific goals and detailed routines are constructed for each patient individually, based on structured collection of data informed by behavioural analysis.

The process of designing and implementing the interventions puts emphasis on personal autonomy.

Clinical formulation is preferred over medical diagnosis.

The attitude of the MDT should always be positive, embracing a strong belief in the patient’s ability to achieve their goals, improve and recover.

Carefully managed feedback and positive reinforcement are an essential part of NR. Consistent interactions with every member of the team are of utmost importance, given that neurobehavioural intervention should not be limited to scheduled activities but in fact incorporated in every interaction.

Over the last forty years the model has been implemented by many neurorehabilitation services worldwide.

Several case studies describing recovery pathways through NR paint a very positive picture, and our own experience at St Peter’s of adopting a neurobehavioural approach has demonstrated it can produce real and measurable outcomes for both our patients and their families.

Dr Grzegorz Grzegorzak is one of the consultant neuropsychiatrists at St Peter’s Hospital a specialist 39-bed Neuropsychiatric facility in Newport, South Wales run by the Ludlow Street Healthcare Group. www.saintpetershospital.co.uk

Case Study: Mehmet On admission to St Peter’s Hospital, Mehmet presented with extreme challenging behaviours including serious assaults on staff, destruction of environment, verbal abuse and shouting.

Mehmet has frontal lobe dysfunction as a result of a head injury he sustained. For the previous 18 months he had been in a general hospital.

At St Peter’s a bespoke positive behaviour support plan and activity plan were developed with Mehmet’s input and reflecting his cultural needs which, under the supervision of his MDT, promoted positive changes to his social interactions, routines and activities. Over nine months Mehmet’s challenging behaviours reduced significantly and he now enjoys a wide range of activities including regular community visits and has strengthened his relationship with his family.

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LEGAL

H Physio-turned-lawyer Glen Whitehead, of Irwin Mitchell, on the continual problems hindering what should be a transformative tool for serious injury patients.

aving spent over 20 years as a physiotherapist, I remember the initial problems experienced by patients and healthcare professionals in ensuring an effective joined up approach to rehabilitation.

This was especially noticeable as patients moved between stages of recovery in acute centres and then on to rehabilitation in the community. This gave rise to the initial concept of the Rehabilitation Prescription (RP) a decade ago.

Having since retrained as a serious injury lawyer, I see similar issues still affecting my clients today.

The RP should set out exactly what treatment is required for an individual in the aftermath of a serious injury, a bespoke approach to each patient’s specific needs.

Its launch followed an NHS Clinical Advisory Group (CAG) for Trauma report in 2010 calling for better coordination of care after major trauma.

A total of 22 major trauma networks (MTNs) were set up in England and the RP was introduced.

According to the CAG for Trauma, all severely injured patients needed an RP to define their needs and explain how they should be met after discharge from acute trauma services.

Every patient admitted to a Major Trauma Centre should have their rehabilitation needs assessed and documented through an RP, it said.

The RP was created to play an integral role in improving how trauma was handled in the UK. It should give patients and GPs, as well as rehab professionals, oversight of the identified needs and recommended treatment.

But the all-party parliamentary group on acquired brain injury’s (APPG on ABI) landmark Time for Change report warned that: “RPs are not made available to all individuals with an acquired brain injury, and GPs rarely receive a copy so cannot facilitate access to neurorehabilitation services post-discharge.”

On the back of such issues, RP2019 was released last year.

IS IT ALREADY TIME FOR REHAB PRESCRIPTION 3.0?

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L E GA L

This updated second version came with a stipulation that a rehabilitation assessment should take place within 48-72 hours of the patient’s admission; and that it had to be completed for all major trauma patients who need rehabilitation at discharge.

Also, it required certain items to be developed with the involvement of the individual and/or their family/carers, and administered by a specialist healthcare professional.

For all these changes, I believe there are still flaws that need addressing.

Reports I hear from some quarters suggest that RPs are, at times, being treated as a tick-box exercise.

Everyone knows they need to complete it, but perhaps not everyone does so as comprehensively as they could.

Some consider the tool clumsy and unable to cater for the nuances of what may be a complicated and progressive rehabilitation plan.

The challenges remain where treatment bridges hospital care and the transition upon discharge home.

In many cases the RP is being completed in brief and then accompanied by a more detailed referral letter outlining the key rehabilitation challenges and objectives.

Some healthcare professionals have told me that RPs simply aren’t given the gravitas they deserve within their field or organisation, and thus don’t receive the allocated time needed to complete them appropriately.

For many, RPs have become an extra burden in an already packed weekly schedule and therefore are being rushed through.

By the time it reaches the GP, it may be a document lacking cohesion and, therefore, is arguably of limited value to them or the patient.

I recently discussed this with a group of allied health professionals and was told that many physios, occupational therapists and other therapy disciplines are completing RPs as best they can; but still feel it necessary to include the covering referral letter.

I consider that a key component of the success of the RP is that, wherever possible, it is created in partnership with the patient, however, these documents are reportedly not always being passed to the patient.

This could be for a number of reasons, perhaps partly

Some consider the tool clumsy and unable to cater for the nuances of complicated plans

down to some consultants and GPs seeing little value in passing what appears incohesive information on to the patient or their family.

Communication between the treating professional may also be affecting the success of RPs. I heard from several orthopaedic surgeons at a conference event recently who said they have relatively little direct input into the RP process and the default position is to rely upon the Band 7 therapists to complete the RP. I am of the view that it is essential that the treating consultant contributes directly to the plans formed on the RP, as they have such valuable input to offer.

They ultimately understand the limitations produced by the injury itself and the treatment or surgery they have provided.

Of course every professional involved in rehabilitation wants what is best for their patient or client; and we are all united in driving forward for better outcomes.

Is further work needed by government and national healthcare decision makers in reaffirming the role of RPs in achieving this? Or are they destined to be discarded and never reach their full potential?

Should updates to the RP system be in the offing?

If so, I would propose one significant change.

In the modern trauma centre arena the legal profession has so much to offer in negotiating and providing resources to enable our clients to achieve their best possible rehabilitation outcome.

RPs are supposed to map out the full rehab picture for the individual, and in cases where patients have commenced litigation if solicitors can be involved in the early discussion and maybe even contribute to the RP, I am confident that so much more can be achieved.

This would be a bold step, but I believe can only be of benefit to our clients, and from a healthcare perspective represent a truly patient centred approach.

Glen Whitehead represents adults and children who have sustained life-changing injuries and also family members who have lost loved ones as a result of fatal accidents. He is based in Irwin Mitchell’s Sheffield office.

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TH ERAPY

Neurologic music therapy as an effective rehabilitation tool for stroke survivors 40

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T HE RAPY

By Daniel Thomas, joint managing director of Chroma Therapies Suffering a stroke is a frightening event. They occur suddenly and without warning, usually caused by a blockage of arteries leading to the brain, which is known as an ischaemic stroke.

Another, less common stroke, can be caused by bleeding into brain tissue when a blood vessel bursts, but ischaemic strokes remain the most common.

Regardless of which stroke is experienced, it always affects how the body functions.

Depending on the part of the brain injured and the extent to which it was injured, there are a number of effects that could occur including sudden weakness, loss of sensation, or difficulty seeing, speaking or walking.

It is the surrounding area where the stroke occurs which predetermines the functions affected, so effects may differ for each victim.

At Chroma, we have worked with several stroke patients in both NHS and private clinical settings and even undertaken pilot schemes on stroke wards providing neurologic music therapy (NMT) as a rehabilitation technique, which has proven to be highly effective.

Providing NMT to stroke patients to aid rehabilitation resulted in significant improvements in the treatment of patients recovering from a stroke, not to mention enhanced goal-setting, improvements in wellbeing and mood and improvements across impairment domains (sensorimotor, psychosocial, speech and language, cognitive), with a knock-on effect for some patients on independence in activities of daily life.

The success of our work within such pilot schemes, as well as continually alongside NHS and private healthcare providers, helps to demonstrate just how effective neurologic music therapy can be to improve quality of life.

How NMT helps clients rehab Any one of us can respond to music – emotionally or physically. It can make us cry, smile, sing, recall the lyrics, even improvise lyrics creating new words/ideas or dance, move or sway.

Music automatically connects with the brain, which is why it is so effective in rehabilitation. Its automaticity of response allows healthy and unaffected parts of the brain to be recruited, allowing patients to re-learn functions such as movement or speech, via these new neural pathways.

In fact, we have found that stroke patients have been able to exceed predetermined recovery outcomes thanks to the use of neurologic music therapy during

rehabilitation, when used alongside conventional rehabilitation techniques.

This technique plays a significant role in enabling stroke victims to surpass recovery outcomes and improve their quality of life for themselves and their loved ones.

A recent study conducted at Anglia Ruskin University’s Cambridge Institute for Music Therapy Research found that music therapy, used alongside other rehabilitation techniques, did help improve rehabilitation outcomes in stroke patients.

177 patients took part in the study over two years and a total of 675 sessions of NMT were carried out.

These music sessions were found to help improve mood, concentration, motor function and gait of all participants.

Finger movements also improved as well as patient engagement. The use of music and instruments allowed patients to achieve a high amount of repetition which helped them to achieve their goals.

As is always the case with music therapy, exercises were far less clinical and in fact more fun or play-like, and patients were able to gain an immediate response from the exercises via the sounds they created, which served as a vital motivation tool. Improvements in these 177 stroke patients brain and motor functions over two years, further solidifies the idea that, when NMT is used alongside conventional rehabilitation techniques such as physiotherapy, occupational therapy, speech therapy, and clinical psychology, it helps to dramatically improve the rate of recovery.

Adopting NMT, alongside mainstream rehabilitation techniques, continues to demonstrate significant improvements in stroke recovery and remains the determining factor in the success of rehabilitation and improvements to quality of life. www.wearechroma.com

NRTIMES 41

CASE MANAGEMENT Sponsored feature

Family experience of acquired brain injury and associated services Brain injury case managers need to work with the individual with brain injury within the context of their family. There is often limited support available to meet the needs of family members and to support the critical role they play in the rehabilitation and care of their relative. BABICM (British Association of Brain Injury and Complex Case Management) supports case managers’ understanding of this area of work and facilitates all opportunities for research. In this latest article, Mark Holloway, one of BABICM’s Advanced Registered Practitioners details his recent research surrounding the family experience of ABI and associated services, and describes how this work developed in producing a book for family members and clinicians. Further consideration is given on how this type of research can increase knowledge and influence future clinical practice.

It does not take huge imagination to recognise that an ABI to a loved one has a significant impact on wider family and friends.

Whilst every person and every family is different, the stories families tell us often have some common threads: the shock of first hearing the news of the injury, being thrust into the unfamiliar world of hospitals and the slow realisation that life will never be the same.

Family members are therefore themselves affected by the impact of ABI upon their relatives and, as stated above, they play an important role in the rehabilitation and long-term support required. Research in this area aims to understand how families are impacted and what are their needs?

For his own doctoral research, Mark employed a

mixed-methods design to capture the lived experience of family members of people with ABI. The results of the quantitative and qualitative data were triangulated against the literature.

The quantitative element of the research identified strong correlations between the relative’s assessment of the invisible impairments suffered by those with an ABI (cognitive, executive, behavioural and emotional difficulties) and lack of insight. This correlation was not present in relation to physical impairment. It was observed that increased loss of insight and behavioural difficulties were strongly correlated with loss of friendships by the non-injured family member.

The results of the qualitative element of the research identified that family members’ experience is complex and enduring, encompassing most aspects of life, and is affected by the context in which it occurs as well as by formal and informal support structures.

The particular nature of the grief and loss experienced by families is ambiguous, develops over time and leads to ambivalent feelings for family members who perceive no option but to remain involved. Informal and formal support frequently fails to take account of the reality and complexity of the condition and fails to integrate the relative by recognising their own losses and trauma.

Relatives’ views on the services received identified significant gaps in practitioner knowledge, most especially of those aspects of life that were of most concern to them, the invisible impairments and issues with insight. Practitioners that were valued were more likely to be specialists in the condition and practiced as “expert companions” supporting the relative to develop a new “neuro-narrative” to reconstruct their identity in the face of their ongoing grief.

During the process of this research, family members

(Clark Wilson, J., and Holloway, M. (2019) Family Experience of Brain Injury: Surviving, Coping, Adjusting, 1st Edition Routledge. ISBN 9781138896697)

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CA S E M ANAG E M E NT Sponsored feature

reported that they rarely had the opportunity to tell their whole story, for the focus to be upon them and their hard-won wisdom. From this sprang an idea, to collate in a book those stories.

Family Experience of Brain Injury: Surviving, Coping, Adjusting therefore showcases a unique collaboration between relatives of brain injured individuals and professionals from the field of neurorehabilitation.

Family members from all different viewpoints tell their story and how the brain injury of a loved one has affected them.

The intention of the book is to provide a space for those hidden and marginalised voices, the people who are in for the long haul, often dismissed by services and left to cope in isolation.

By combining expert commentary with real life experiences, the book points towards sources of support, normalises the experience and provides a context for understanding the grief and losses of family members. It is hoped that not only will the hard-earned knowledge and wisdom evident in this book help educate health and social care staff, it also highlights how love, commitment, hope and perseverance, against a seemingly unbearable grief, can remain.

Greater understanding of the complex lived experience of family members may support more effective responses to both them and the individual with ABI, integrating services and families to improve quality of life. As ABI is a process with changes to functioning developing over time, the information and knowledge required by loving and supportive relatives needs to be created with them, being person, family, injury and context-specific.

Research call for all case managers BABICM is strongly aware that those working with people with brain injury have a plethora of clinical narratives and experiences that could be progressed into documenting such shared knowledge; however, most feel that this is beyond their skill set or remain incognisant of the qualitative value of their experience.

BABICM Research Group is looking to explore how to capture these untapped narratives and promote the increased collaboration between academic research and clinical practice.

BABICM is excited to announce the launch of

its latest research project in association with Plymouth University, entitled, ‘Whose Outcome Is It Anyway?’. The organisation is exploring its membership’s understanding and experiences with outcomes in case management practice.

This is circulating through the BABICM membership, with all case managers being encouraged to participate in the project survey.

BABICM will be providing updates on this research project, along with the outcome of other innovations to increase sharing of narratives, in future NR Times editions, so watch this space!

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Leading the remote resistance Andrew Mernin reports on an emerging technology aiming to revolutionise how rehab professionals work together on patient goals.

COVID-19 could spark a cultural renaissance, according to some in the art world.

Artists thrive on isolation, BBC arts chief Jonty Claypole points out, and therefore an explosion of new work could emerge from current conditions.

The spirit of renaissance – meaning ‘rebirth’ in French – might also course through our workplaces.

Kitchen tables, spare bedrooms and garden sheds are among the many residential quarters to have been commandeered by home workers recently.

And while it hasn’t been easy for many to adjust, the change has exposed some of the inefficiencies and excesses of traditional ways of working.

In the neuro-rehab field this could lead to an irreversible shift in how things are done, says Dr Penny Trayner, a paediatric clinical neuropsychologist.

“COVID-19 could change the way we work forever.

We are already seeing organisations doing a ‘factory reset’ on how they do things, founded on using new skills and technology.

“It’s pretty difficult to justify not doing things in the most efficient way possible. Once the restrictions from the pandemic are lifted, we will no doubt find that going back to the old ways of working is much less efficient than the video conferencing, apps and technology that we have been using in the meantime” Penny and her colleagues at Clinical Neuropsychology Services have long been working remotely to deliver assessments and interventions for young people across the UK.

It's pretty difficult to justify not doing things in the most efficient way possible

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But they also have a stake in the ensuing race towards new ways of working.

For they are the pioneers behind Goal Manager, a cloud-based software platform for rehabilitation goal setting for multidisciplinary teams (MDTs) in remote locations. It acts as a data manager and enables MDT assessment, goal planning, review, communication and evaluation, with all necessary gold-standard processes supported, and all accessible remotely from anywhere.

“Goal Manager was developed directly from clinical practice experiences, ‘by clinicians for clinicians’, and so it has an evidence base behind all of the components built into the software, which cover all of the key practices in team goal setting. The idea developed from my experiences of working remotely while running a community-based neuropsychology service for the past 11 years. This style of working is something we’re very familiar with and, in fact, in neurorehabilitation generally, many are used to working in this manner due to the scarcity of services in the UK.” Although borne out of brain injury services, the platform incorporates the World Health Organisation’s International classification of functioning (ICF) – a global framework that addresses any physical condition. It can therefore be used in any health service context where goal-setting is relevant, for example in stroke, spinal injury and cardiac services.

Penny says: “Remote working is a wave that’s been coming towards all healthcare services for a long time, but there have been barriers to people implementing it, in terms of time and infrastructure amongst other things. Those barriers are now being overcome, because everyone is invested in finding ways to work together remotely. We've already addressed a lot of these barriers in creating Goal Manager and it's ready

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to go for any rehab teams that need it.”

Penny’s day job, delivering neuropsychology services to children and young people in the community nationwide, requires being plugged into MDTs all over the country. Goal Manager emerged from this necessity.

“Most neuro-rehab services in the community involve people working remotely. This is generally the lay of the land for independent services across the UK. The software was developed from within our service to ensure that we could consistently provide best practice, as well as reduce time and costs associated with goal setting, by automating the processes involved. As more of my colleagues took an interest and want to use it for their own services, it took on a life of its own and we launched it for commercial use in 2019.”

In designing the app, Penny recognised that goal setting was a vital, but often extremely time-consuming, element of rehab.

For example, tracking the activity of teams, they found

that one service user, over six months, required an MDT of four people a total of 70.5 hours to complete goal setting activities.

This excluded the time taken to share progress between meetings, and time taken to travel to different locations to meet.

“Spending these hours on goal setting takes away valuable time that could be better spent on clinical work,” Penny says.

Goal setting is crucial in acquired brain injury (ABI) rehabilitation for collaboration within MDTs, motivating service users and tracking progress.

But, despite the extensive evidence base, effective goal setting across services is still inconsistent.

Goal Manager aims to address this challenge. It compiles relevant data from assessments which then form the foundations for goals. Goals are then set using of Goal Attainment Scaling (GAS), a tool which is widely used in rehabilitation, but can be complicated to use in practice. SMART objectives towards completing each goal can then be set, so that the contribution of

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each member of the team toward meeting these goals is clearly laid out.

The platform was initially tested in an independent practice focused on brain injury in young people. It led to a 43 per cent reduction in time spent on goal setting.

These findings were shared at the conference for the neurorehab special interest group at a World Federation for Neurorehabilitation event last year, catalysing demand for the system in large in and outpatient services.

In the UK, Goal Manager also has potential to support the aims of the Rehabilitation Prescription, which sets out the services that an individual should be receiving following a brain injury. This was acknowledged by the UK Acquired Brain Injury Forum (UKABIF) at the end of last year, when Goal Manager was awarded their inaugural Mike Barnes Award for Innovation.

Penny says: “Cutting time spent on goal setting reduces costs and gives more time to spend on actually achieving the goals. Currently, services record their goals in different formats using different documents, maybe on spreadsheets, or maybe on paper, and shared over email, or at physical meetings. There is no consistency and it can be challenging for clinicians to pull all of this together and make sense of the data, as well as service users. We've put everything onto one platform, streamlining the processes involved and enabling progress and output reports to be produced that consolidate all the goal setting data on one document.

“Up until recent weeks, a lot of teams have been dependent on having physical meetings to discuss and coordinate their activity. Goal Manager provides the infrastructure to support a virtual version of what they’ve already been doing. All of its components are tools that clinicians are familiar with and using – and which are linked to best patient outcomes. But we’re also aware that time and other pressures can limit professionals’ capabilities in making best use of these tools. So we’ve simplified activities, providing a onestop-shop for best practice in goal management that allows teams to get on with what they're doing without having to worry about administrative demands.”

Beyond the UK, the platform is being rolled out in

There's no consistency and it's challenging for clinicians to make sense of the data

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the US as part of community rehab services and professional training for physiotherapy students.

Impending developments include a patient-portal, which will support service users in taking ownership of their goals.

“Patients can already log into Goal Manager, but we want to create a more bespoke portal for them, to make their goals more meaningful and accessible and to give them more input into the narrative of their goals. Just the other day I had a 11-yearold patient, who accesses their data through the existing platform, telling his team ‘it’s my life and it is important to me that I can use the app and see my own data’. And he’s absolutely right.”

A research dashboard that enables researchers to easily analyse the vast bank of anonymous data generated by its users is also in development.

By making the platform free to use for educators and researchers, it is hoped that it proves an impetus for

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a much-needed surge in research into outcomes in complex neurological conditions.

Meanwhile, Penny and her team aim to provide technological guidance to rehab professionals struggling to adapt to the remote working renaissance.

“Many healthcare professionals, and people in general, perhaps don’t feel confident using technology and have just not had to use it that much in their work in the past. We are running a series of webinars and training events about goal setting and making the best use of technology in rehab.

The current changes we’re all going through are something we are well prepared for; we’ve got all the infrastructure in place to support teams to carry on doing their work. So we want people to know that we’re here to help.”

For more on Goal Manager visit www.goalmanager.co.uk Goal Manager team members Dr Penny Trayner (left) and Merryn Dowson

References: Gauggel, S & Hoop, M. (2004). Goal-setting as a motivational technique for neurorehabilitation. Handbook of Motivational Counselling, 439.

Plant, S. E., Tyson, S. F., Kirk, S., & Parsons, J. (2016). What are the barriers and facilitators to goalsetting during rehabilitation for stroke and other acquired brain injuries? A systematic review and meta-synthesis. Clinical rehabilitation, 30(9), 921-930.

Tucker, P. (2015). Goal setting and goal attainment scaling in child neuropsychological rehabilitation. In Reed, J., Byard, K., & Fine, H. (Eds.), Neuropsychological rehabilitation of childhood brain injury (pp. 151–170). London: Palgrave Macmillan.

The hierarchy of goals that underpins Goal Manager Functional assessment recording a patient's level of impairment in a series of categories relevant to their condition

ICF Assessment

Higher order goals, focused on addressing he results of the functional assessment, that outline the general aims that will ideally be achieved for that patient The steps each individual clinician will take towards achieving each goal for that patient

Goal

SMART Objective

SMART Objective

Goal

SMART Objective

SMART Objective

SMART Objective

SMART Objective

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A 20-YEAR ADVENTURE IN REHAB ROBOTICS Tech pioneer Hocoma has long been pushing the boundaries of innovation in rehab. Now marking its 20th anniversary, it plans to step up its ability to drive better patient outcomes, as Deborah Johnson discovers in conversation with Clemens Muller, global head of clinical and scientific affairs at the company.

Back in 2000, the world was a very different place, particularly in terms of technology.

Many of the high-tech innovations we now accept as standard were not yet launched and healthcare remained one of the most traditional markets around.

Yet into this climate, Hocoma launched the prototype of its pioneering Lokomat, a robotic medical device which provides repetitive and highly physiological gait training to patients, enabling even some of the most impaired to learn to walk again.

While it has gone on to become one of the world’s leading robotic medical devices, in 2000, it was a significant and controversial disruption into a longestablished and relatively low-tech rehab scene.

Clemens Muller, global head of clinical and scientific affairs at Hocoma, says: "Twenty years ago, gait rehabilitation was completely different. Therapists had to physically move patients' legs - a manual task that can be very tiring and requires huge effort, particularly when you are doing it many times a day."

Gery Colombo, a trained electrical engineer with an interest in neural rehabilitation, founded Hocoma alongside Peter Hostettler, an economist, and Matthias JĂśrg, a biomedical engineer.

"The founders realised the need for a change to this way of doing things and to find a better solution," says Clemens.

"They wanted to establish a venture which could use their specialist knowledge and go in a particular direction, with a purpose and intention. The goal was to change rehab as it was known. This was absolutely new; in fact so new and innovative that the world of healthcare rehabilitation wasn’t really ready for it. This The Armeo Power helps to break the limitations of conventional arm and hand therapy.

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Patients using Hocoma's Erigo device.

was a challenging phase but one in which Hocoma needed to be really entrepreneurial with a very clear vision and focus and to keep on going. It did take a little while until it was accepted and it was a long journey for the founders.�

Despite the initial challenges of launching such a hightech product, over the past two decades, the Lokomat has become one of the most widely used gait rehabilitation devices in the world.

It has helped to set an industry standard in rehab

products for people with brain injury, stroke and other neurological disorders. Hocoma recently installed its 1,000th Lokomat.

But it has also built on the success of its flagship product by launching an array of other devices.

Among its product portfolio is the Erigo, which assists with patient mobilisation in the earliest stages of rehabilitation; its Armeo range, which supports the recovery of arm and hand function; and its Valedo products that targets back pain.

The business is headquartered in Switzerland but works in 27 countries worldwide - and believes it is changing the lives of people in clinics across the globe.

Clemens says: “I think there are three drivers behind innovation in healthcare - social aspect, which includes demographic changes and the shift from using products which are based on evidence rather than just experience; the technology changes in the world as a whole; and the clinical changes, which are moving on quickly and have changed dramatically to encompass robotics and exploit the previously unused potential of this way of therapy.

"These drivers have changed, and continue to change, the landscape of the world in which we work. Hocoma has always been at the front pushing the boundaries

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and helping to change the resistance there was at the beginning of our journey.

“When you went to a rehab conference 15 or 20 years ago, there was only one tech provider there, which was us. But if you compare that to now, there can be anything up to 20 companies at an event, including start-ups that are working in technology fields like robotics or sensor-based equipment, offering products for inpatients and outpatients, for acute needs. So there is a huge selection now available.

"There is also the demand from the market to integrate technology. The key for us has always been how to integrate this technology into a routine of therapy to use it to its full potential. It is about not only being engineering-driven but understanding how to use that to make a bridge to the rehab world and understand the

It makes a huge difference to the demands placed on the therapist

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link to the human world - bringing the know-how and capability and opening that up for the needs of patients.

As a market, we do need to do more homework in that area.

“Lots of clinics already have integrated the technology they are using very successfully, and with our products it makes us proud to see how the patient is being supported to the highest level.

"I have seen this happening in many clinics around the world and it gives me goosebumps to see how happy patients are with how it is working for them. It also makes a huge difference to the work and demands placed on the therapist, and that is something that also makes us so proud.”

Now celebrating its 20th anniversary, Hocoma’s ambition for the future is to continue changing lives and reaching out to millions more around the world.

A strategic move in achieving this came in 2017 when Hocoma joined its now-parent company DIH – bringing it under the same roof as other rehab technology developers including Motek.

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“We are planning heavily in our development team and are continuing to develop our launch plan and product road map .

"We hope the global coronavirus outbreak and the shutdown we are seeing around the world does not affect our plans too much in the short-term, but we will have to see how that develops and adapt to that as we need to.”

As a business which has helped to change traditional practices and approaches in rehab globally, one area in which Hocoma would like to push for further change is in widening patient access to its own products, and other high-tech solutions.

“At the moment, it is not a given that all patients and all clinics will have access to our products. Of course technology has its price, but we need to address that at some point. We need to work with clinics and insurance companies to try and find a solution here and to shape

The Lokomat being put through its paces.

“We have always been a pioneer since we were established so we will continue this with new and better solutions to benefit people’s lives.

"Our focus is on bringing solutions which are innovative, high quality, effective and efficient.

"The future for us will of course be affected by the healthcare market in general. We are seeing a rapid demographic change around the world and this will mean a change in the healthcare approach. There will be a search for solutions.

“With the huge move towards digitalisation through the Industrial Revolution 4.0, there will be a greater role played by artificial intelligence and virtual reality.

We will continue to develop as a business so we can continue to be at the front of what is happening.

“Traditionally, we have come up with a new innovation every year, which could be a new product launch, or else new features or a new version of an existing product, but we are always developing what we have to make it the best it can be.

"We are always learning by doing and have a network of research and academic partners all over the world and this enables us to come up with great products which deliver solutions.

Hocoma founders (from left): Dr Peter Hostettler, Dr Gery Colombo and Matthias Jörg.

the future of rehabilitation.

“It is important to find optimal solutions which increase access to technology, to improve the quality of rehab, while looking at the cost effectiveness of such products.

“Over the next five to 10 years, there are going to be more stroke, cerebral palsy and traumatic brain injury patients who are needing innovative solutions and our goal is to develop more solutions which will benefit them and the therapists.

“When money and costs are involved it can often be a long journey, but we believe if all stakeholders got together to find a way of best dealing with this, together we could deliver the best rehab to patients, and this is something we would like to be involved in delivering.” www.hocoma.com

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An uprising in rehabilitation NR Times reports on NeuronUP, the technology pioneer proving that content is king in the world of cognitive stimulation.

The rise of online content services has revolutionised TV viewing and music consumption in recent years.

And in neuro-rehab too, it is changing approaches and patient interactions.

Leading the way in this new world order is NeuronUP – an online platform which is helping rehabilitation professionals across the globe to drive better outcomes from their patients.

The tool features more than 10,000 activities, classified into 40+ different cognitive processes and areas of occupation; with new materials released every fortnight.

CEO and founder Iñigo Fernández de Piérola set up the company based on his experiences as a neuropsychologist and his work with patients with neuro-deficits, including those caused by brain injury.

In the years preceding its 2011 launch, recognition had grown of the need to carry out more ecological neuropsychological assessment (Tirapu, 2017).

There was a movement towards more “ecological, motivational and personalised content in the process of cognitive stimulation and rehabilitation”, allowing

The platform is used in many different ways by professionals around the world

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clinicians to better assess the accurate functional condition of individuals, NeuronUP states.

Cognitive functions are interrelated, and interdependent on a functional and anatomical level, the company explains.

When daily tasks are carried out, neural combinations that recruit specific neuropsychological processes to perform it are put into play.

NeuronUP’s goal is to identify these processes and design useful and relevant activities for neuropsychological rehabilitation, occupational therapy and speech language therapy.

An initial collection of materials was released in 2012, which has since evolved into a multi-faceted tool used by professionals across the globe to help patients with cognitive deficits.

But in a world where brain training ranges from mainstream fad to seriously researched approaches, Fernández de Piérola cautions that the platform is nothing without professional input.

"The material by itself does nothing. The patient is not going to improve his memory in six weeks, pressing a button on a tablet for example, he or she needs to be guided by a professional. If the professional is bad, the platform isn´t going to do magic."

Ongoing work continues among professionals using the platform, exploring the cognitive processes within

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specific conditions, such as MS, acquired brain injury, Parkinson’s and forms of dementia. This research will then shape future content.

The platform, says Fernández de Piérola, is used in many different ways by professionals – often influenced by varying country-to-country approaches.

“Here in Spain we can’t tell someone in Australia how to work with their patient.

"Professionals have the ability to adapt the materials of the platform to their interventions in many different ways, always according to the needs of each specific patient.

“The platform can either be used in the clinic, or the patient can log into it from home and work through a session the professional has created ahead of time, via its ‘NeuronUP2GO’ option.

“So, there is a lot of variety in terms of how that professional wants to work and there is really no set way to use it.

"It really depends on the individual’s needs and we help

Users can adapt the materials to their interventions...in the clinic or in the patient's home

to make the professional´s job easier.”

User-friendliness is crucial in enabling patients to access intense therapy at home, whether they can do it themselves or with the assistance of family members.

“It’s created with the idea that they can log in and the materials are ready to go and they can work through that intense therapy.”

Common feedback from professionals is that the platform saves them time, enables them to better plan sessions and increases patient motivation.

“Our focus will continue to be on creating new

materials. Just like Netflix is a platform for video content, we want to continue being a source for good neuro-rehab and cognitive stimulation materials. Also, we want to add extra features to compliment the platform.”

Surprisingly for an online service, these features include paper resources which many professionals still prefer to use.

But there are also advanced technical additions planned, including virtual and augmented reality content. The company is also developing a series of content focused on the link between neuropsychology

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Iñigo Fernández de Piérola, founder and CEO of NeuronUP.

For more information on NeuronUP or to try a 15-day free trial visit www.neuronup.com or email brian@neuronup.com.

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and emotion – “an underdeveloped aspect of neuropsychology,” according to Fernández de Piérola.

“It’s early days but we’re currently working on a social cognition part of this, looking at how we can move from that to something that helps people with social challenges.”

But the company says its most significant development in coming years will be implementing greater use of the 150 million+ pieces of data it has related to neuro-rehab interventions.

“We are currently analysing this data and aim to put it to use in modelling future content. We want to be able to predict cases and develop content that could help professionals to do so too.”

NeuronUP’s content is increasingly being used in research projects around the world.

Among them was a study by the University Hospital of Tenerife, presented at the European Congress of Neurology in 2018.

MS patients received 24 sessions of “computer assisted” cognitive treatment through NeuronUp. Significant improvements in verbal memory, delayed visual memory, working memory and semantic fluency were noted.

Also, MRI analysis showed a 0.7 per cent increase in the global grey matter volume in most patients.

There was also a decrease in certain problems within learning and memory processes, suggesting that cognitive therapy improves cognitive performance; and may induce structural and functional changes in the brains of MS patients (Plata-Belle et al, 2018).

The platform is currently used in over 25 countries spanning 1,000+ facilities and 4,000 professionals.

Around 40,000 patients have now had access to its content.

Part of its overriding appeal, says Fernández de Piérola, is its personalised approach.

“It’s important that the content is relevant to the patient. Something that motivates them.

"So, we have over 10,000 activities and a lot of these can be personalised.

"For example, in a word search you could add in the name of a patient’s favourite football player, or the name of their grandchildren.

“This personalised approach extends to the provision of one-to-one webinars for professionals using the platform. It gives the client the possibility to interact with the NeuronUP team at almost any time.

“We love it when our clients interact with us. We want them to check out the new content and tell us how it is affecting their clients.

"We love to get suggestions as well, if we can create something that will be useful in your practice, we´ll do it!” www.neuronup.com

APIL Training – Accreditation Pending Royal College of Physicians – Accreditation Pending APIL Training – Accreditation Pending

ACCREDITED TRAINING PROGRAMME

Royal College of Physicians – Accreditation Pending

ACCREDITED TRAINING PROGRAMME

APIL Training – Accreditation Pending Royal College of Physicians – Accreditation Pending

ACCREDITED TRAINING PROGRAMME

UKABIF’s 12th Annual Conference th UKABIF’s 12 Conference November 2020 Monday 9th Annual th November 2020 London W1G 0AE Monday 91 Royal Society of Medicine, Street, UKABIF’s 12th Wimpole Annual Conference Royal Society of Medicine, 1thWimpole Street, London W1G 0AE Monday 9 November 2020

PROGRAMME: Royal Society of Medicine, 1 Wimpole Street, London W1G 0AE PROGRAMME:

The conference will open for registration at 9am at which time the exhibition will be open for networking.

We developing anopen exciting programmeat for theat day which willthe include reference toopen Acquired Brain Injury Theare conference will for registration 9am which time exhibition will be for networking. and Neurorehabilitation: Time for Change and the progress made towards fulfilling the recommendations.

We are developing an exciting programme for the day which will include reference to Acquired Brain Injury and Neurorehabilitation: Time for Change and the progress made towards fulfilling the recommendations.

The conference will open for registration at 9am at which time the exhibition will be open for networking.

PROGRAMME:

CONFIRMED SPEAKERS: CONFIRMED SPEAKERS:

We are developing an exciting programme for the day which will include reference to Acquired Brain Injury and Neurorehabilitation: Time for Change and the progress made towards fulfilling the recommendations.

Dame Jane Dacre, Training and Education Lead, National Rehabilitation Centre Stan Gilmour of Violence Reduction Unit, Thames Valley Police Dame JaneSuperintendent Dacre, TrainingHead and Education Lead, National Rehabilitation Centre

CONFIRMED SPEAKERS:

Gill Robinson CEO Interaction Communication Academy Trust,Valley Vice Chair of Stan Gilmour OBE, Superintendent Head and of Violence Reduction Unit, Thames Police the Teaching Schools Council, National Leader of Education Gill Dame Robinson CEO Interaction and Communication Academy Trust, Vice Chair of JaneOBE, Dacre, Training and Education Lead, National Rehabilitation Centre the Teaching Schools Council, National Leader of Education Stan Gilmour Superintendent Head of Violence Reduction Unit, Thames Valley Police

ADDITIONAL SESSIONS: ADDITIONAL SESSIONS:

Gill Robinson OBE, CEO Interaction and Communication Academy Trust, Vice Chair of Lightning Poster Pitches the Teaching Schools Council, National Leader of Education SportsLightning Concussion Panel Discussion Poster Pitches Toolbox Session SportsClinical Concussion Panel Discussion ADDITIONAL SESSIONS:

UKABIF Awards – Film, Innovation, Lightning Poster, Inspiration (kindly sponsored by Cygnet Healthcare) Clinical Toolbox PosterSession Pitches UKABIF Awards – Film, Innovation, Inspiration sponsored by Cygnet Healthcare) SportsPoster, Concussion Panel(kindly Discussion Clinical Toolbox Session UKABIF Awards – Film, Innovation, Poster, Inspiration (kindly sponsored by Cygnet Healthcare)

SHORT Screening of the UKABIF Film awards will be followed FILM by presentations of the UKABIF awards and drinks SHORT COMPETITION Screening of the UKABIF Film awards will be followed with of thethe event closing at 5.30/6pm.

FILM by reception presentations UKABIF awards and drinks COMPETITION

sponsored

by Cygnet Healthcare reception with the event closing atwill 5.30/6pm. ofKindly the UKABIF Film awards be followed SHORT Screening

TECH N OLOGY Sponsored feature

STEPS rehabilitation opened in Sheffield in 2017 to help clients with complex neurological conditions reach their own personal goals.

It recently had an opportunity to put Rewalk’s Restore system through its paces, as senior physiotherapist Jamie Story explains.

Every step of the way There is a drive for experienced clinicians to utilise their skills and available equipment to help our clients reach their goals. We are always looking at trialling and implementing systems into our practice that we feel will benefit our clients the most.

Recently, Stephen Ruffle from ReWalk Robotics spent the day at STEPS providing the team with a training session to outline and demonstrate the capabilities of the Restore system.

Stephen was very knowledgeable and passionate about the product and was able to answer all of our questions about the device.

The benefits and systems of the device are clearly stated online on the ReWalk website.

The Restore is relatively quick to set up, taking approximately 10 minutes. A therapy session at STEPS lasts for approximately an hour which would allow for up to 45 minutes of therapy time, taking into account removal of the equipment.

Current physiotherapeutic interventions require a lot of energy expenditure from staff as they have to be at floor level to help with the mechanics of the foot and ankle during the gait cycle.

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T E C HNO LO GY Sponsored feature

When the device is in place it takes control of this for the therapists via a motorised unit attached to the pelvis and a series of straps and pulleys down the leg.

This, when in active mode, allows plantarflexion and dorsiflexion of the foot. The timing of the pulley system works from a sensor that is placed on the unaffected limb. This allows the machine to coordinate both legs in a more functional gait pattern.

We use Functional Electrical Stimulation (FES) devices to achieve similar results with the same client group. The Restore device allows us to replicate the desired movement without the sensory stimulation that comes with the FES modality.

This is particularly important in clients who have sensory deficits or hypersensitivity through their legs, as a result of their injury, where FES would not be suitable.

Another factor that makes this device unique is the

ReStore in a nutshell The ReStore is a powered, lightweight soft exo-suit intended for use in the rehabilitation of persons with lower limb disability due to stroke.

Functional Its design combines natural movements with plantarflexion and dorsiflexion assistance that adaptively synchronise with the patient’s own gait to facilitate functional gait training.

Individualised levels of assistance and compatibility

propulsion it gives during the gait cycle, allowing for stronger and more consistent 'toe off'.

This will allow clients to develop a more efficient and less energy consuming gait pattern. This is not something that you get with the passive systems and orthosis usually associated with such injuries.

The Restore is an excellent piece of equipment for clients who are not able to receive FES, and have a single lower limb deficiency.

Its use is specific to a particular problem and it is effective at tackling that therapeutic issue. Here at STEPS, we will continue to liaise with ReWalk, when we feel that the device is the most appropriate option for our clients.

We are looking forward to adding this equipment to our therapy tool box, and providing our clients the opportunity to trial this exciting addition to gait re-education.

with supplemental support aids ensure that ReStore has broad applications for patients across the gait rehabilitation spectrum.

Real-time feedback and adjustable levels of assistance enable the therapist to optimize sessions and track each patient’s progress.

To register your interest in ReStore contact Stephen Ruffle on stephen.ruffle@rewalk.com or +44 (0) 746 9254453.

Read more on www.rewalk.com.

Restore compared to other rehabilitation methods

Data-Driven

Versatile

Functional

ReStore

Rigid Exoskeleton

Manual Therapy

FES Foot Treadmill Drop System Gait Trainer

Plantarflexion Training Rapidly & automatically adapts to changes in patient gait Natural freedom of movement Rapid transitions between assisted & unassisted/unrestricted walking Supplemental support aids determined by patient needs Compatible with a wide range of functional walking tasks in clinics Adjustable & measurable assistance Quantifiable gait metrics

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COMMENT

Predicting potential and the value of hypotheses in brain injury recovery...

Because in neuro-rehab, who can really know what the future holds? By Vicki Gilman

F

actors that likely influence rehabilitation potential and recovery and predictions of the same include previous abilities, age at onset/injury, individuality, drive, underlying motivation, health, support, environment, the exact nature of injury and the exact nature of individual pre-morbid neurology.

Other influencers include our understanding of the brain, how it works, how it repairs and how it responds in the short, medium and long term after injury.

Alongside our developing but yet still poor understanding of how exactly treatments and therapies work, even where we ‘know’ that they do, it is therefore impossible to pinpoint and prescribe a very exact treatment or approach for a specific individual's neurology, type of insult and likely natural recovery.

This makes us very cautious on positive predictions of recovery. We would hate to promise and not deliver, we don't want to build 'false hope' to disappoint or let down clients and their loved ones. Thus we tend to err on the side of caution.

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Added to this, it can be hardest of all to predict at earlier stages and a bit easier to see the trajectory as things develop over time.

Most clients and their nearest and dearest are new to the complex world of neurological injuries. Often they are happy at the initial survival when it was perhaps touch and go for a while.

Later down the line conversations of rehab potential are often had, commonly when services are working toward discharge or a slower stream rehab scenario.

At this stage, clients and families often feel we are writing them off. They see potential. Disagreements can ensue.

This is difficult - we don't want to give false hope, yet we do (presumably) want each person to progress as far as possible.

I've never in my 30-plus years in this field met a therapist who didn't want their patients to achieve the best possible results. Yet I have observed many differences of opinion between families and treating professionals, between professionals themselves and between predictions and actual eventual results.

This leads me to think of all predictions of potential - from professionals and non-professionals - as hypotheses.

Previously I listed the vast array of factors we have yet to fully understand, but which in combination must be what gives rise to the variety and individuality of each neurological presentation we meet.

From these many influencing elements, we must draw up hypotheses – and it is perfectly possible to have

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Vicki Gilman is a neurorehabilitationist and case manager at Social Return Case Management.

many and opposing hypotheses at any one time.

Hypotheses are a tool by which it is possible to identify each 'best guess' based on the information and understanding that is available.

Once proposed, the function of the hypothesis is to act as a statement of a possible outcome which can then be tested to see if it can be supported or not.

The language of the hypothesis gives a clear, inclusive and non-confrontational way to discuss differences of opinion.

In effect it is face-saving if outcomes are not what any hypothesiser suggested.

It allows everyone to feel heard and that their thoughts and observations have been considered.

Even more importantly, it allows goals and treatment plans to be built around testing the hypotheses that have evolved, lessening the risk of the client missing out on opportunities to improve.

Where progress is not made as hoped for, it facilitates healthier conversations and supports adjustment; in a way that doesn't happen when the client and family remain at odds with treating professionals because they don't feel heard and may feel they see things that the teams do not.

Families know their person and do indeed see things – consider, for example, the scenario in rehab centres and care homes especially, where there are many people on and off shift over the course of a few months.

Some – many - may know the client pretty well, but they are not spending several hours every day between the times when care and rehab inputs may shape

what happens. The family member who comes in - and regularly spends perhaps many hours with the person - often reports observations which differ from those of the professionals.

When not seen through professional eyes with their 'trained assessment filters', this information is often given less weight.

In my experience it would often have been wrong to dismiss this potentially valuable additional information as though the family see through 'hope filters' that are so distorting they cannot be a true measure.

I therefore I make an argument to: > Hypothesise > Hunt down potential in whatever time you have to spend - robustly test any reasonable hypotheses proposed > Measure and record directly to support or not a hypothesis > Set timeframes for testing each hypothesis > Educate clients and families about what makes a hypothesis - they may need to hypothesise in the longer term > Allow those involved across the team and, beyond, have alternative opposite hypotheses - just test them!

Let's stop thinking we know and start experimenting more with what is in front of us, using the evidence base we have but being mindful that we are still a long way from understanding enough to preach rehabilitation potential as a ‘truth’.

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When brain injury unleashes t n e l a t s prodigiou

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From the trauma of brain injury, new talents can suddenly emerge in everything from maths to art and music. Deborah Johnson looks at the phenomenon of acquired savant syndrome.

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When a person sustains a brain injury and has to endure the long and difficult road to recovery, there seems no more unlikely time for an unexpected and prodigious talent to emerge.

Yet there are examples from around the world of people who develop such new-found capabilities after suffering a brain injury, in areas they had little or no interest or ability in beforehand.

While very rare, with some experts claiming there are only around 90 known cases globally, the onset of ‘acquired savant syndrome’ has seen brain injury survivors develop amazing levels of skill in areas like art, music, mathematical challenges and poetry writing.

One well-documented case is that of Jason Padgett, a 31-year-old man who suffered a brain injury in an attack in Washington DC in 2002. During his recovery, he realised he had developed remarkable mathematical abilities, alongside the ability to draw complex geometric figures and grids. He was also able to see patterns in everything he looked at.

Having previously dropped out of university, as a result of his newlyacquired talent, he was able to return to academia to study number theory.

Another example is that of Scott Mele, who was left with a traumatic brain injury after a car collision.

One morning, he woke with an overwhelming urge to paint. Despite having never picked up a paint brush previously, Scott was suddenly able to produce impressive creations, remembering he ‘ended up painting every night for nine months straight’.

Furthermore, there are the cases of Tony Cicoria, an orthopaedic surgeon from New York, who discovered a talent for playing the piano after being struck by lightning, and Tommy McHugh, who became an accomplished poet after a stroke.

The acquisition of such impressive skills, particularly after such a traumatic episode, is believed to arise following damage to the left anterior temporal lobe

There is hidden potential in all of us, in varying degrees and types

(LATL) and acquired savant syndrome.

Psychiatrist Darold Treffert, who has researched acquired savant syndrome for decades, explains: “Following an injury to the brain, there’s recruitment of undamaged cortex from elsewhere in the brain, then there’s rewiring to that undamaged area, and a release of dormant potential. It’s a compensatory mechanism involving areas that may have been dormant, or areas that are ‘stolen’ and their function changed.”

Professor Dave Hiles, of De Montfort University, is a specialist in studying savant syndrome, and while the link between autism or disability and savant skills, or “islands of brilliance”, is more common, acquired savant syndrome presents the same extraordinary abilities but in sudden and highly rare instances.

“There are two necessary components of the savant syndrome – the first is a remarkable ability to memorise, to record detail, or repeat an operation endlessly and efficiently, and the second is a means of giving expression to this ability,” he explains.

“The importance of the second should not be underestimated. Not only are savants noticed by this expression of their special abilities, but also savants like doing something, and doing it again, again and again.

“No one has any idea how many savants go unnoticed.

In the case of prodigious savants it is possible that early recognition and careful encouragement are important contributory factors to how the talent develops. It has been proposed that helping the savant to achieve a higher level of general functioning may result in a loss of the special savant skills. However, there is little evidence for this, and it may well be that ‘training the talent’ could be a valuable approach towards improving socialisation, communication and selfesteem.”

With the discovery of such unexpected and outstanding talents following a traumatic injury, and no clear explanation as to why that should happen, many have speculated that acquired savant syndrome is in fact the release of talents which have lain dormant.

Dr Treffert shares the view that we all have a ‘hidden savant’ to some degree.

“I think there’s hidden potential within us all, in varying degrees and types. The most common ability to emerge is art, followed by music, but I’ve had cases where brain damage makes people suddenly interested in dance, or in Pinball Wizard,” he says.

“Talent is distributed in all of us in different ways, and while some of us are just good, others of us are exceptional.”

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Action among the daffodils

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A new evidenced-based approach to brain injury rehab is taking shape in the heart of the English countryside, as Andrew Mernin discovers

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William Wordsworth urged to the world to “come forth into light, let nature be your teacher”.

He was obsessed with the natural world’s power to help, heal and nourish.

Surely then, the lake poet would have approved of the owners of his old Cumbrian bolt hole.

For they are also channelling the power of nature, in the name of rehabilitation.

On the outskirts of Keswick, down the sort of road that only the Lake District can produce - dramatic skies, looming peaks and ancient trees stretching their arms over the narrowest strip of tarmac – stands Old Windebrowe.

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The finishing touches are just being put on restoring the 500-year-old tithe barn and dairy cottage when NR Times arrives on a wintry morning.

Fortunately the heating is working and, over coffee in the barn’s vast communal space, Jill Beswick updates on the progress.

She recently moved here from Shetland to take up her role as clinical lead for Calvert Reconnections, an acquired brain injury (ABI) rehab centre harnessing the great outdoors to drive better patient outcomes.

Her experiences of running a community rehab service on the remote Scottish island could stand her in good stead for rolling out her new employer’s big plans.

“I’m used to remoteness, weather and small communities that really seem to look after each other.

We moved up to Shetland for a two-year adventure and ended up staying for 16 years but when I saw this job it struck me as a brilliant opportunity and I’ve been on a rollercoaster ever since.”

We’re sitting in an area where brain injuries survivors, support workers and therapists will gather in the morning, anticipating a day of outdoorsy adventure; and socialise in the evening, windswept and glowing from

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the best the Keswickian elements can throw at them.

“When I show the locals round they all remember the ceilidhs they used to come to here,” says Jill. But the real historical highlight of the building is its Romantic connections.

Wordsworth’s close pal growing up was one Raisley Calvert, and their friendship continued into adulthood.

By age 21, however, Raisley had developed tuberculosis and was dying. He saw great potential in his young writer friend and wanted to help him fulfil it. He made sure that his family’s Old Windebrowe cottage was given rent-free to Wordsworth and his sister Dorothy and they lived there for several years. He also left him £900 in his will to afford him the freedom to write, prompting William to pen the sonnet, To the Memory of Raisley Calvert declaring: Calvert! It must not be unheard by them / Who may respect my name that I to thee / Owed many years of early liberty.

It’s fitting that the room where Wordsworth lived, and which was a launchpad for his career, will be used for life-changing interventions once more; with Calvert Reconnections developing it into a classroom for residents and staff.

The organisation believes it has created the UK’s - and possibly the world’s - first intensive ABI rehab centre focused on outdoor activities.

Residents will typically stay for three to six months, with accommodation for up to ten adults with ABI at any one time.

The centre offers a “24-hour interdisciplinary approach”, with clinical and rehabilitation support combined with various outdoor activities to challenge individuals and deliver evidence-based outcomes.

Before its £1.4m redevelopment, the property had been largely unused, save for some activities like archery.

Thanks to a fundraising drive by the Calvert Trust, the charity which provides outdoor adventure holidays for disabled people, it has undergone a dramatic transformation.

The Grade II-listed building now has accessible bedrooms, a self-contained flat to help support people in their independent living, alongside a living area with kitchen and laundry facilities to encourage residents to do as much for themselves as possible.

The centre also has links to Calvert Trust’s portfolio of other facilities, including outdoor activities centres and accommodation also in the Lake District.

The facility adds much-needed residential brain injury care capacity, helping to alleviate a problem continually highlighted by neuro-rehab professionals; the chronic lack of available resources, which can jeopardise patient outcomes.

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Recent research carried out by Exchange Chambers barristers and Calvert Reconnections highlighted this further.

It shows that ninety-seven per cent of senior brain injury lawyers believe there are a lack of residentialbased brain injury rehabilitation units in the UK. Also, 71 per cent say the NHS is unable to provide effective support. (Clearly this research took place before the Covid-19 crisis, and time will tell what impact the pandemic has on NHS investment in the future.)

Calvert Reconnections is helping to plug this gap in residential ABI care, while also offering a novel approach – drawing on the benefits of outdoor activity.

“The fact that we really focus in on the outdoor activities and adventure as part of our therapeutic model makes us completely unique. There is nowhere else doing what we do,” says Jill.

“The outdoor activity approach is our therapeutic medium to reach the goals that people want to achieve around things like planning, time management, social interaction and managing impulsive behaviours.”

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Outdoor activities can also enhance wellbeing and confidence, Jill explains.

“The goal might not be to climb a mountain, for example, but it's the fact that what you are doing is a challenge that matters, and this alters how you feel about yourself and your own mental wellbeing. If I can do this, which I never thought I could do, then what else can I do? It starts opening up other horizons.”

The outdoor element is underpinned by an interdisciplinary programme which Jill and her team build around the needs of individual residents.

“With a neuropsychologist, neurophysiotherapist and junior occupational therapist employed on-site, alongside rehab coaches with a background in enabling support or activity instruction, the team has been put together to respond to bespoke needs.”

And daily routines do not follow the norm in neuro-rehab.

“We don’t have a clinical model here,” she says. “We don’t have say, physio at 10 o’clock and speech therapy at 11. We don’t have a set programme of that kind at all.

“We work in conjunction with our participants, get to know their aims and work together to achieve them. It depends on their interests as to how we match that and also decide what therapies are appropriate.

“Certainly, we don’t have a programme that everybody

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has to fit into. We speak to people, find out their interests, the difficulties they have, their aspirations and what they want their future to look like. We can then look at how we can build that into their own therapy programme.”

An array of activities is offered to residents, depending on their individual needs and preferences. Calvert Reconnections has an adjacent horse riding centre and is also only four miles from the Calvert Lakes Activity Centre.

“Taking the access we have to the stables as an example, it’s not just about horse riding, there is equine care, stable management, repairing fences and outdoor management. We are focusing very much on the activity challenge alongside the vocational one.

“We have two people carriers which will enable us to get out and about, and we do want to work with the community and with local businesses and groups. The response we have had so far has been fantastic and we hope there are many opportunities for us to work together. We're not a secure unit, we've developed this as being a part of the community, and we want people to feel able to go out into the community.

Doing this helps to open up further opportunities for life experience.”

After busy and active days, the Calvert Reconnections centre itself offers a homely environment, with ten individuals bedrooms on the ground floor and a firstfloor living area including a snooker table to increase the opportunity for social interaction. The centre is designed to be both relaxing and challenging.

“If you go to most rehab units, they are a bit like hotels in that every bathroom and bedroom looks the same.

But that’s not what we've got here. Every room is

different, which gives it character, but also provides a better opportunity from a rehab perspective because it can offer different challenges. Depending on what type of bathroom facilities they have at home, for example, we can try to replicate them to better prepare them for the future.

“Also, with a lot of newly-built rehab units which are very accessible, but very clinical, you find that when somebody is going home, they may not have had any experience of steps, slopes or other walking challenges that occur in real life areas. Whereas here, while some of it is a bit quirky because it's a very old building, we have a real life setting and we want it to challenge our residents.

“If you make things too ideal, you’re setting people up for failure when they go out into the community. Can they go to the local shop if you've not been practicing on stairs or different surfaces?”

The approach is also designed to support residents’ mental wellbeing, helping them to better manage the cognitive challenges of daily life.

“Often, when people are going through their acute phase of rehab and to get them out of hospital, the focus is on whether you can walk, wash and dress yourself. But actually they may not be able to manage a daily routine. They look good because they're walking fine, but planning their day and managing their activities within the day is a real struggle. So we feel that to be able to work on that cognitive rehabilitation, mental wellbeing is a massive aspect that we'll also be addressing.”

As well as focusing on the needs of her residents, Jill also hopes to help to build up the hard evidence for Calvert Reconnections’ distinct approach.

“Previously this type of service has not existed, which is why we need these evidence-based outcomes.

But everyone we have spoken to and consulted with, whether that's potential clients, clinicians, case managers, physicians and personal injury lawyers, is really excited about the model and feels that this is absolutely the way forward.”

And once such evidence is collected demonstrating the value of Calvert Reconnections’ approach, Jill aims to share it as widely as possible.

“We are very excited about the work we are doing and the impact this will have on the people who come to us from across the country, and hopefully on many others too,” she says.

Since our visit to Calvert Reconnections has opened for referrals. Check online for details at www.calvertreconnections.org.uk.

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MEDICAL CANNABIS AND NEURO-REHAB An update from Professor Mike Barnes, chair of the Medical Cannabis Clinicians Society and a consultant neurologist.

1st November 2018 was an important day in the history of UK cannabis medicine. On that day the government moved “cannabis based medicinal products” from Schedule 1 to Schedule 2 of the Misuse of Drugs Regulations 2001. This enabled doctors on the specialist register to prescribe cannabis. The regulation change was actually quite liberal and allowed for prescription for any condition and for the prescription of any product meeting good quality production standards (EU Good Manufacturing Practice).

Unfortunately, since that point there has been no prescription of a full extract cannabis product on the NHS. Why is prescription so limited?

There are a number of reasons. Foremost, doctors have not been educated in cannabis medicine. This is not a criticism as at the moment the endocannabinoid system and the cannabis plant are rarely taught in medical schools and there is a paucity of post-graduate teaching programmes. These are now emerging, such as the Academy of Medical Cannabis (conflict declaration - I am the academy's director of education).

The Medical Cannabis Clinicians Society is also now in existence and is a not-for-profit forum for clinicians who wish to be educated about cannabis medicine.

The society has an annual conference and is currently putting on roadshows around the UK and offers a peer support forum and soon will be publishing an online evidence database. Second, another obstacle to prescription are the guidelines produced by the Royal

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College of Physicians and NICE. Both of these have, in my view, come out with an unnecessary negative view of cannabis in the context of analgesia. Their negative view has been counterbalanced by a most positive attitude from the Medical Cannabis Clinicians’ Society who have recently produced their own guidelines and which are available online. The RCP and NICE guidelines are not mandatory but nevertheless are a barrier to prescription.

A doctor on the NHS willing to prescribe cannabis needs to gain approval from his/her trust and so far, no trust has been brave enough to agree to prescription against those recommendations. The third reason for lack of prescription is that cannabis (except Epidyolex and Sativex) is an unlicensed medicine which means that the prescribing doctor takes more responsibility and liability than usual. Fourthly, many doctors feel there is simply insufficient evidence to warrant prescription of cannabis as an analgesic. Let me now address the latter issue.

First, some basics. There are over 120 cannabinoids in the cannabis plant but really only two have been extensively studied. These are CBD (cannabidiol) which is the nonintoxicating cannabinoid and THC which in isolation causes the “high” sought by recreational users. There is relatively little known about the other cannabinoids, but all so far have studied have medicinal properties.

The plant is further complicated by the presence of terpenes which gives cannabis its characteristic smell and the flavonoids, which give it colour. Once again, the terpenes and flavonoids so far studied also have medical properties. However, by necessity we have to focus on CBD and THC. So, what could cannabis be beneficial for in neurological rehabilitation? The most convincing evidence is for pain management. There is no doubt that THC and to a lesser extent CBD are analgesic and provide a useful 2nd or 3rd line analgesic treatment option. Certainly, for chronic pain, better than opioids with their attendant risk of

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knowledgeable physician, is actually very safe. CBD has very few side effects. It can cause fatigue, sedation, dry mouth, stomach cramps and diarrhoea, but usually in high doses and often only in a small proportion of people. THC has more problems but it should be remembered that CBD is a negative allosteric modulator for THC and counteracts some of its negative effects.

Indeed, most cannabis physicians would only prescribe a high THC compound in combination with CBD, so as to mitigate the THC side effects. THC can cause dizziness, dry mouth, sedation and the euphoric ‘high’ sought by the recreational user. There are also contraindications.

The evidence is fairly clear (but not definitive) that a high THC compound, particularly in a young male user, can trigger a psychotic episode, particularly in those with a history of psychosis or schizophrenia or such a history in a first degree relative. It is clearly wise not to prescribe cannabis in such an individual.

THC can also cause a tachycardia which can be an unwanted problem in people with some types of cardiac dysrhythmia or a recent heart attack or stroke. Caution is wise in those with liver disease (particularly hepatitis C). The evidence of hepatotoxicity is limited although has been noted with very high CBD isolate doses. Most problems occur in the high THC street cannabis that is not “covered” by CBD. The complications seen in the street user are very rare in the medicinal user who has prescribed the medication by a knowledgeable physician. Drug interactions may occur as both THC and CBD interact with the cytochrome system and thus have a potential to interact with many drugs, but the actual clinical experience is that cannabis does not have significant drug to drug interactions, with a few exceptions, such as clobazam with CBD. So, overall, cannabis is not a ”cure-all” as some claim but nor is it a danger to the fabric of society as others would have. It is generally a useful and safe medicine that can add significant benefit to our therapeutic armoury in neurological rehabilitation. Let’s use it more!

No trust has been brave enough to agree to prescribe against these recommendations

serious side effects and death in overdosage.

The first cannabis drug licensed – Sativex – is a useful anti-spastic agent and has less side effects than the more common standard medications like baclofen and dantrolene.

What else? CBD is a very good anxiolytic and indeed anxiety can be a really troublesome problem in the context of many long term disabling conditions that we deal with. Similarly, many people with neurological conditions have problems with sleep and also appetite and once again CBD and THC can help those symptoms.

The anti-convulsant effect of CBD (and a lesser extent THC) is well known from the widely published cases like Alfie Dingley. Not a first line anti-epilepsy drug maybe, but useful for those with drug resistant epilepsy.

The other side of the coin is safety. Is cannabis safe? No medicine is entirely safe but it is clear that cannabis, prescribed properly and appropriately by a

Professor Mike Barnes is an honorary professor of neuro-rehab, director of Maple Tree Cannabis Consultancy and chairman of the Medical Cannabis Clinicians Society.

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CAREER

HOW TO BE A GOOD MEDICO-LEGAL EXPERT As medico-legal experts, neuro-rehab professionals can offer valuable insights to cases which shape the lives of serious injury survivors and people with neurological conditions. Here Dr Edmund Bonikowski provides his top tips on what can be a highly rewarding career.

I’m often asked by colleagues what makes a good medico-legal expert in complex high value (multitrack) cases. It’s something I’ve thought about a lot since I started doing this kind of work and something I’ve discussed with solicitors, time and again.

A commitment to the caseload Being a medical expert witness is not a trivial undertaking. People should certainly not view this work as an easy way to make money. Of course, it’s possible to make a good living, but only for people who have something valuable to offer.

It’s also a competitive business, so being as good as you can be makes a big difference to the number of instructions you will receive. Like most aspects of professional life, the more you put into it the more you get out in several ways.

First and foremost, medicolegal expert work requires real commitment in order to deliver the high standards of service that are required by the Courts and legal teams.

In addition to providing an initial report based on a home visit, there are very likely to be conference calls or face to face meetings with the instructing solicitor and barrister, other experts and even the client and their family.

In addition, further review of documents arising from the rehabilitation process, further full reports and joint

It's a team effort so being a good team player is a real advantage

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statements with the equivalent expert on the other side are often required.

Going the extra mile for your client As an expert in you field, your clinical experience and your understanding of the medico-legal process is really taken as read by the Courts.

However, becoming recognised as a good medicolegal expert requires that you go further than this.

Solicitors value experts who are friendly, readily available, open to dialogue about their opinion in the context of the claim, express themselves clearly and concisely in writing, and will stick to that opinion substantially as they proceedings evolve, especially when answering Part 35 questions or preparing a joint statement.

Most medico-legal experts have full or substantial part time jobs which preclude them from doing private work at certain times of the day. Taking on more than a very minor medico-legal commitment is likely to put this obligation under pressure, because solicitors often want to talk to experts during normal office hours and certainly, case conferences almost always take place then.

It is the nature of this work that Court reports may come under scrutiny, and a good medical expert needs to be open to this and be prepared, diplomatically, to reassert their opinion.

There is no room for an expert who is unable to make themselves available or unwilling to enter into a dialogue with either the legal team or other experts.

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A valuable part of the legal team It is essential that a medico-legal expert appreciates their role in the process of a claim and their importance to the team which is brought together and co-ordinated by the instructing solicitor. It’s so important that the expert witness remembers this important point: it’s a team effort, so being a good team player is a real advantage.

A good expert and team member should always try to deploy the softer skills of being a good clinician; punctuality, courtesy, friendliness, careful listening and expression, and appreciation of the role of others.

Key also to the team is the barrister whom you are likely to encounter during a case conference, and it is often on their recommendation that solicitors instruct experts.

Like any team, the litigation team functions best when the members have worked together previously and know what to expect from one another. Becoming part of that team is a gradual process of proving yourself to the instructing solicitor.

Good communication matters Communication by email with the solicitor is fundamental to being a good team member, especially where there are likely to be delays in meeting deadlines.

If the legal team knows in advance that there will be a delay, they can very often accommodate it, but they may react very badly to being kept in the dark and then surprised!

When you’re building your case load as a medico-legal expert, consider your reputation. It’s really bad for reputation building to take on too much work and fail

to deliver, and much better to start slow and build gradually, while delivering quality reports.

Be impartial, expert and confident While of course the duty of an expert is to the Court, and not to be partisan for claimant or defendant, it is essential that in delivering an impartial medical opinion, the medical expert becomes a full member of the team – whichever side has made the instruction.

Remember, if you allow yourself to be swayed in your opinion from that which you really believe, you risk being exposed by your opposite number and by the evidence base. Barristers want expert witnesses who are professionally credible, presentable and articulate on their team. So, it’s very important for an expert to make a good impression on the barrister, as even though these days the chances are vanishingly small, the expert may have to appear in court and be cross-examined.

A chance to make a positive difference Being a medico-legal expert is a really interesting and rewarding area of medical practice, all the more so if undertaken enthusiastically. Expert witness work is also an opportunity to positively influence the lives of people with complex injuries and disabilities – those injured in accidents or through negligence, by helping to direct the use of the substantial financial resources of insurers. Could you change someone’s life by sharing your expertise with the Courts?

Dr Edmund Bonikowski is chairman of NRC Medical Experts.

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Through a shared love of cycling, Dave Buchan is helping to transform the lives and outcomes for people with brain injuries. Deborah Johnson speaks to him about the crucial role he sees for cycling in neuro-rehab.

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The feeling of being outdoors, exploring the world, the exhilaration, made him want to do more

Martin was particularly hard to reach.

Aggressive and unpredictable in his behaviour after a brain injury, those tasked with working with him were at a loss as to how to help. Nothing seemed to work.

But a chance remark that he used to enjoy cycling when he was younger changed his life trajectory and got the gears of his meaningful recovery into motion.

He was introduced to Dave Buchan, a specialist cycling coach and mentor, and began to engage in ways the people around him had never imagined possible.

From the full-of-anger man he had become after his injury, through the medium of cycling, his behaviour began to change.

“That’s not to say he was really keen on the idea from the start,” recalls Dave. “I distinctly remember when he first came to us with his case worker, he refused to get out of the car.

“But since then, what we have done together has been amazing. His progress has been fantastic and helps to show the power of the positivity of cycling.

“I firmly believe cycling is fundamental to rehabilitation of all kinds, but Martin’s case shows the positive effect it can have on someone recovering from a brain injury which has had such a devastating impact on their life and behaviour.”

For Martin, his life has been changed by getting back on a bike, something he had not done since he was young.

“I think for many people the case is the same, where they cycled when they were at school or university, but gave it up once they could get a car, started to work or had a family - but even though Martin’s brain had been injured, it obviously retained those special memories of how much he used to love cycling. That was a starting point and an ‘in’ for me to be able to help and to build that relationship with him.”

Dave is founder of Bike4Health, an organisation which promotes the health, wellbeing and sustainability benefits of cycling in the North of England.

“We started talking about bikes, about rides we could do, and we have a workshop on site which Martin was very interested in. When I first suggested some of the things we could do, he would instantly say ‘I don’t like that’ or ‘I’m not doing that’ and become defensive. But we usually did get round to doing these things and he loved them. The feeling of being outdoors, exploring the world, the exhilaration, made him want to do more.

“We would get out and about in the van, go to cafes and local bike shops, and he began to rediscover the world and things in it he enjoyed doing. We would have a great time, laughing and joking, singing and chatting, it was fantastic to see how he was progressing through his love of cycling.

“There is something so powerful for anyone about being out in the forest or countryside, riding down a path that snakes this way then that, going over all its lumps and bumps, exploring the world around us and discovering new things all the time. And that sense of excitement really did capture Martin. He loved the freedom it gave him.”

After engaging with cycling and building trust with Dave, Martin began to interact with some of Dave’s other more challenging clients, to great success on both sides.

“I do some work with patients in a secure hospital and they built a relationship with Martin, who came along to some of the sessions. They’d ask about him when he wasn’t there, and likewise he would ask about them.

For these patients, they are under 24/7 supervision and my cycling sessions are possibly the only time they get off their ward. We push and challenge them in the same way we do with Martin.

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INS IG HT

“One patient recently was really struggling so I brought an electric bike with me to help. We did an eight kilometre course and he walked up one hill, but he completed it. Again, this person did have an interest in bikes as a young person, and that was the means of engaging him. That kind of impact can be life-changing for someone for whom things seemed so bleak.”

Martin is now a regular at the Bike4Health headquarters in Kirkley, Northumberland. He helps out two days a week with a multitude of tasks, and has become an unofficial part of the team.

“He is a fantastic worker and loves coming here, and it gives us all great pride to see how much he has overcome. He is certainly a different Martin now to the one we first met - rather than not wanting to get out of the car, he now texts me to say what time he wants to be picked up."

Dave’s own love of cycling began as a young boy living in a tough community in Tyneside, when the opportunity came up to ride to picturesque Northumberland with his school.

“That was the catalyst for my love of bikes and cycling, and I became quite obsessed from that point. I loved being outdoors and being able to escape to somewhere and see the beauty of the countryside and the world.

There is always so much more to do and explore, and I wanted to help people discover that sense of awe that I did as a young boy,” he says.

After becoming an amateur cyclist and competing across Europe, Dave then moved into a role as a mechanic, then managed a cycling shop.

But it was Dave’s own experience of recovering from a head injury which made him want to share his love of

I woke up laughing, then started crying for no reason so I knew something wasn't right

cycling more widely.

“I was cycling home from the shop and I was on a quiet side road, cycling around 4 or 5mph, and a little girl ran out into my front wheel. I went straight over the handle bars and landed on my head. I went to hospital for X-rays and they were all fine, but I wasn’t assessed for my head. However, that night I woke up laughing, then started crying, for no apparent reason, so I knew something wasn’t right.

“I went back to hospital the next day and I was told I had post concussion syndrome. It can cause mood swings and, if you don’t have calmness and positivity around you to help your recovery, you can go to some dark places in the longer term.”

Dave used cycling to aid his recovery and then set about helping others to do the same.

“I’ve always known the power of cycling and the positivity it can bring, and that experience made me realise I wanted to help other people realise that too, whether as part of recovery, or just for general wellbeing.”

Bike4Health was established in 2014 and has grown from just Dave to a three-strong senior team, two full-time bike mechanics and 12 freelance guides and coaches. The organisation has also invested in specialist facilities and a workshop. Its core activities are working with schools across the North, with more than 4,000 children benefitting from sessions, in addition to its more specialist and bespoke rehabilitation work with patients.

“The positivity cycling generates is huge - as well as the endorphins are released by being outdoors and exercising anyway, there is also the sense of achievement. Managing to get up that hill and come down the other side is a big accomplishment for many people. You can see the growth in confidence and the fact they’re loving what they’re doing, like we saw with Martin, and it’s just great to help people discover that.

“That endorphin rush is priceless and can change someone’s whole outlook on life. In society today we’re very materialistic and seem to get pleasure from buying things, and we spend so much time on technology. This is going back to the basics. We are designed as humans to move, to think, to be active, and cycling is helping the body to achieve that.

“Cycling can play an important role in mental health in general, not just for patients as part of rehabilitation, but for everyone. It’s important in tackling obesity, promoting wellbeing, and cycling can be a very social activity which can engage even the hardest to reach people, as we have seen in a number of cases, but particularly that of Martin.”

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RESEARCH

MYSTERIES

of the deep

Sara Din explores REM sleep behaviour disorder and its increasinglyevidenced links to neurological conditions.

What do you think is happening in the images opposite? Maybe the man is reaching for a glass of water on the bedside table, or perhaps he is moving to adjust his pillow?

You might be surprised to find out that this man is actually punching someone; or at least, he thinks he is.

He’s suffering from REM sleep behaviour disorder (RBD). These images are taken from a video recording showing a patient having a dream that he was fighting an attacker.

RBD is a parasomnia, a term describing abnormal behaviour during sleep. Notably, RBD has been linked to Parkinson’s disease and could be a potential early manifestation of the disease (Schenck and Mahowald, 1995).

In fact, researchers at the University of Minnesota found that 48 per cent of the patients they tested for RBD also had a neurodegenerative disorder.

Other studies looking at RBD have found even higher instances at 73 per cent and 92 per cent.

In these studies, Parkinson’s disease was one of the most common disorders associated with RBD. Other findings report that on average there is a gap of 10-13 years between being diagnosed with RBD and the later development of Parkinson’s symptoms (Schenck and Mahowald, 1995).

This data shows a close relation between the two disorders and suggest that RBD could be an important precursor to a more life altering disease.

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RE S E A RC H

It is not uncommon for patients to shout, swear, punch and even run in their sleep

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RESEARCH

One of the main features of RBD is a loss of the usual muscle paralysis that accompanies REM sleep. REM (Rapid Eye Movement) sleep is the stage of sleep when the most vivid dreaming occurs.

So anytime you wake up and remember your dreams, they most likely occurred during this phase of the sleep cycle.

In fact, brain activity during REM sleep is very similar to waking brain activity, which means that lots of different areas of the brain are highly active just like when we are awake.

During REM sleep, the activity of motor neurons in our nervous system, which usually send signals from the brain to the muscles, is suppressed when we sleep so that our bodies don’t move. This is called atonia.

In addition to this loss of REM atonia, the content of the dreams experienced in RBD is different to what you and I may usually experience.

We may have arguably more ‘normal’ dreams, like going on an adventure through the Amazonian rainforest with the cute professor from university you had a crush on (definitely not a personal account).

Unfortunately for patients with RBD, dreaming is a much more unpleasant experience.

A comprehensive literature review conducted by Schenck and Mahowald (1995) found that 87 per cent of patients reported dreams to be more vivid, full of action and violent compared to normal dreams.

In actuality, the dreams experienced by patients with RBD are usually severe nightmares, with one patient describing his experience of the condition as “violent moving nightmares”.

The most common storyline the dreams follow is one where the patient is defending themselves against another person or an animal. It is not uncommon for patients to shout, swear, punch, have a conversation and even run, all in their sleep during episodes of RBD.

One patient described the condition as 'violent moving nightmares'

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Because of this, RBD can often cause injury both to the sufferer and the bed partner. Many patients report instances in which they were dreaming of protecting their wife against an attacker, only to wake up and realise that they were the ones attacking their wife.

Couples usually work out an alternative sleeping arrangement, such as different beds, so that one of them doesn’t get whacked in the head whilst snoozing.

Some patients have even used homemade solutions such as tying themselves to their bed using belts and ropes to avoid unconsciously throttling their partners.

So what exactly causes RBD? The short answer is we still don’t know.

Although the exact cause remains unclear, current research implicates the pons and the medulla, two areas that make up part of what is known as the brain stem.

Research suggests that there is a loss of brain cells in these areas, which then leads to the lack of muscle atonia during REM sleep, which leads to dream enactment.

To further understand the mechanisms underlying RBD, scientists have turned to a source surprisingly close to home.

Cats have been used in experiments investigating

RE S E A RC H

Some use homemade solutions like tying themselves to their beds with belts

REM-atonia because their sleep cycles can be easily identified using brain imaging techniques.

Like humans, they also have periods of REM and nonREM sleep, although these phases are shorter.

Experimenters inflict a lesion to a specific area of the brain stem to observe its effects on how the cats sleep.

If they behave differently compared to cats without the lesion (controls) then it can be inferred that this difference in behaviour was due to the lesion.

Studies using this method have found that lesioned cats experience a permanent loss of REM-atonia and even show ‘hallucinatory-type’ behaviour that is similar to the behaviour shown by humans acting out their dreams (Schenkel and Siegel, 1989).

Although there are obvious issues with relating data from cats to humans, this provides good evidence for the idea that the brainstem is involved in keeping the muscles paralysed during REM sleep.

The inability to voluntarily control your movement is also characteristic of Parkinson’s disease.

Parkinson’s is a neurodegenerative disorder - that means there is a loss of neurons in the brain which are the cells responsible for communication.

More specifically, there is a death of the neurons involved in movement, known as dopamine neurons, which is what makes it harder and harder to control your movement.

This is why some patients will have an incessantly shaky hand- this is known as a tremour.

Dr Sixel-Doring and his colleagues in Germany investigated Parkinson’s patients who also had RBD. They found that patients with RBD were older, had longer disease duration, were in more advanced stages of Parkinson’s, had more falls and experienced more psychotic symptoms.

Dr Sixel-Doring and his colleagues suggest that RBD could be important in signalling the advancement of Parkinson’s.

Compared to other neurodegenerative diseases, RBD is hard to diagnose in the early stages of Parkinson’s so it is important for future research to focus on designing treatments that are sensitive to the dynamics of RBD. Although drug therapies exist for patients with RBD, so far nothing has succeeded in stopping it altogether.

Considering a large majority of RBD patients are likely to develop a neurodegenerative disease later on in life, the need for further research is fundamental to developing our understanding of disorders like Parkinson’s.

Future questions to be investigated include whether RBD could be used as an early predictor of neurodegenerative disease and why it is related to more severe Parkinsonian symptoms such as longer disease duration.

With the continuing advancement of neuroscientific research, we will be able to gradually uncover the complexities involved in shadowboxing in your sleep.

Sara Din is a cognitive rehabilitation assistant and holds a masters in cognitive neuroscience.

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On nrtimes.co.uk this month

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Diet and nutrition and its overlooked links to stroke recovery Bridging the divide between law and healthcare for the good of patients

E VE NT S

Dates for your diary

a screening of the UKABIF Film awards, followed by presentations of the UKABIF awards and drinks reception.

Registration is at 9am.

The Royal Society of Medicine, 1 Wimpole Street, London, W1G 0AE. www.ukabif.org.uk

To list your event in NR Times contact editor@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.

OCT 20 14 + 15

The Care Show Bringing together the UK care sector, featuring 80+ speakers and 60+ CPD accredited conference sessions.

The NEC, Birmingham. www.careshow.co.uk

NOV 20 09

UKABIF Conference 2020 The UK Acquired Brain Injury Forum’s annual conference in London is always stand-out diary date for UK brain injury professionals of all disciplines and this year is no exception.

An exciting programme with a range of expert speakers is currently being developed, while there will also be

09 + 10 European Neuro Convention Europe’s only trade fair for brain and spine, featuring 150 exhibitors, 150 CPD seminars and 35 interactive workshops.

The NEC, Birmingham. www.neuroconvention.com Naidex Europe's most established event dedicated to the independent living and healthcare industries, showcasing the latest innovations in mobility, care, assistive technology, moving and handling, accessible design, inclusive sports, travel and more. The show brings together trade professionals, healthcare professionals and members of the public for two days of innovation, discovery and education.

The NEC, Birmingham. www.naidex.co.uk

26 Whose Life Is It Anyway?

Supporting effective brain injury rehabilitation in the community Event will review the current state of brain injury rehab, with particular focus on the unique factors impacting community-based rehabilitation.

Delegates will hear innovative perspectives from brain injury rehabilitation specialists across a

variety of sectors and identify the unique components that make up effective rehabilitation for individuals with traumatic brain injury.

ILEC Conference Centre, Earls Court, London, SW6 1UD. See full details on www.abisolutions.org.uk.

FEB 21

04

Rising to the Challenge Managing the diverse challenges in the field of brain injury.

Presented by Elysium Neurological.

One Great George Street, Westminster, London, SW1P 3AA. See full details on www.abisolutions.org.uk.

MAY 21 The Neuram Foundation International Neuro-Rehabilitation Conference on Stroke An event dedicated to doctors, nurses and therapists specialising in stroke and those with an interest in the field, including individuals affected by stroke and their advocates.

The conference aims to bring together 150 - 200 delegates from Mauritius and around the world, to create a platform for personal and professional exchange.

Mauritius (venue TBC).

See www.neuram.org or email neuram@bcdme.com for updates on venue and date.

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CLOCK ING OFF

If your resolve is flagging…

Here’s a little adaptation of Rudyard Kipling’s work, sent to us by Lorcán Murray, who works for Careplanner, a care home software firm.

If you can spare some bread, when all about you, Are hoarding theirs and blaming it on you, If you can keep your hope with doubt around you, But make allowance for their doubting too, If you can isolate, without debating,

Lockdown Lowrys On doorsteps across the land, shopping bags with pasta, rice and other staples are being deposited to self isolators.

But in one part of the country, vulnerable people are also receiving paint pots, brushes and paper – and they too are an essential delivery.

For the charity Headway Wearside, based in the North East of England, is using art, crafts and cooking to help its community of brain injury survivors to stay connected.

Since its arts-based therapies club the You and Me project closed in the lockdown, it has been sending out arts and crafts supplies and recipe cards to help brain injury survivors get creative.

Kim Hunter, from the charity, said: “Being creative is a great way to express our thoughts and feelings, and during a time where we may be shut off from the outside world and our friends and family, this is more important than ever."

And though online, don’t deal in lies.

When the taunting sun begs escaping, Yet feeling beams, you stay inside, If you can speak – and not make answers your master, Or comfort – but not make reward your aim, If you can pull triumph from this disaster And recognise we really are, all the same, If you can clap from your bedroom leaning And bear the opportunists without shame, See in some, the bare faced scheming But know for more, there is no gain, If you can catch it, kill it and bin it For 20 seconds scrub your hands Sneeze and start at the beginning Without mourning for burnt palms, If you have seen a carer, or grocer, or nurse Heading to work while stuck at home, And so carry a world turned for the worse By keeping calm and carrying on, If you can talk with crowds and keep your distance Or walk to shops and wait outside, If you are friends’ or families’ subsistence And help to spread some peace of mind, If you can fill the unforgiving months With everything you need to survive, With love, with sense, with solo runs, We might just make it out alive!

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Toilet monitor Scientists are turning toilets into diagnosis machines.

They have invented a device that can be fitted to loos to detect signs of various diseases in stool and urine.

It fits inside the bowl, uses test strips and motion sensing technology to analyse deposits and sends the data to ‘the cloud' Taking surveillance culture to its logical conclusion, it’s even got a camera which films each ‘event’ like some twisted Channel 4 reality show.

The researchers said their so-called “smart toilet” technology could be useful to individuals who are genetically predisposed to certain conditions, such as irritable bowel syndrome, prostate cancer or kidney failure.

Dr Sanjiv Gambhir from Stanford University’s School of Medicine in the US said: “Our concept dates back well over 15 years. When I’d bring it up, people would sort of laugh because it seemed like an interesting idea, but also a bit odd.”

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