NR TIMES ISSUE 17

ISSUE 17 QUARTERLY

GA M I N G A N D TH E R AP Y The world’s first wearable therapy controller changes the game

W I L L PA R A LYSE D PAT I EN TS BE WA L K I N G B Y 2 0 2 4 ?

The technology revolutionising possibilities in spinal cord injury

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E DITO R' S NOT E

Looking forward cautiously but optimistically As the vaccination roll-out programme continues and the UK begins, slowly but surely, to re-open, there appears to be a tangible return of optimism.

For those who have spent much of the past year indoors, isolated from loved ones through this cruel pandemic, the confidence is starting to return.

Arrangements to see the friends and family who have been missing for far too long are finally in the diary once more; although caution remains, with events in India in particular a reminder that the pandemic is far from over globally.

But for the many, many people who have struggled since March last year, the hope that we may be able to return to the little things we took for granted meeting friends, enjoying day trips, going out for dinner, watching live sport and music - is now very much on the horizon.

It’s this sense of hope that is keeping us all going.

As Kate Sheehan observes in our interview with her in this magazine: “People need and want hope.”

The past year has been hugely challenging for everyone and, for many of us, it has given insight into the reality of loneliness and isolation experienced by so many survivors as an everyday reality of pre-pandemic life.

For many, it has been a real struggle to adjust to that, myself included. The feeling of having nowhere to go, no-one to see outside of these four walls, of being ‘trapped’ in my own world, has affected me probably more than I’d be willing to admit.

But for so many survivors, these challenges were nothing new.

The findings of new research into loneliness by Dr Stephen Dunne at Sunderland University will be very interesting indeed. It compares the experiences during the pandemic of survivors - who have built such great resilience over months and years of coping on their own - and the very fortunate individuals for whom loneliness has an end date.

And now that we have an end date - currently set at June 21 - we can all hopefully move forward with renewed confidence in ourselves and our outlook.

Anything can be possible, as Harvey Sihota says.

For me, the interview with Harvey is one of the highlights of this issue. Having been left paralysed after an accident in 2009, from the outset he refused to believe this would be a permanent status, even though medical science at that time meant most would probably disagree.

Now, his own work, and that of Spinal Research and the pioneering ONWARD, means that hope is now on the horizon for people living with spinal cord injury.

The positivity and determination of Harvey to challenge himself, as well as what is accepted as reality, is genuinely inspiring and has certainly renewed my own determination to never take no for an answer.

We hope you enjoy this issue, and as ever, we’d love to hear from you. Please do get in touch and let us know your thoughts.

Deborah Johnson Editor, NR Times Deborah@aspectpublishing.co.uk

Andrew Mernin, editor-in-chief andrew@aspectpublishing.co.uk

Deborah Johnson, editor deborah@aspectpublishing.co.uk

Gary Wilding, head of sales gary@aspectpublishing.co.uk Chloe Hayward, sales chloe@aspectpublishing.co.uk Paul Newton, operations manager paul@aspectpublishing.co.uk Ethan Sisterson, social media ethan@aspectpublishing.co.uk

Editorial contributors: Johanna Perra, Ethan Sisterson Design: Sophie Dinsdale Published by Aspect Publishing Ltd 11 Lansdowne Terrace, Newcastle Upon Tyne, NE3 1HN. Registered company in England and Wales (no. 10109188).

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CONTENTS

16 WIL L PARA LY S E D PATIE NTS B E WAL K ING B Y 2024?

Through huge advances in neuroscience and technology, devices which could enable people with paralysis to regain movement are now in trial with a view to commercialisation within the next four years

18 INSPIRED BY MAX BUT FOR EVERYONE

0 6 N E WS

The latest from the world of neuro-rehab.

Meet mum Steph Degodny, whose challenge to find cool gear for her stroke survivor son has spawned a range of inclusive fashion items which is sweeping the States

30 STEPPING UP REHAB TECH

52 RE DE FINING RE HA B THRO UG H GAM IN G

How STEPS Rehabilitation is leading the way in new world-class robotic and VR technology

Meet the business in Australia which is helping people across the globe to exceed their recovery potential through the use of its world-first video game-based rehab device

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C O NTE NT S

62 IS S PINA L C O R D I N J U R Y CUR A B L E ?

YE S, IT IS

76 SUBMITTING TO THE LOVE OF ART

Having lived with paralysis for over a decade, Harvey Sihota is now helping to revolutionise the possibilities and outlook for people with spinal cord injury through his leadership of Spinal Research

Brain injury survivors are gaining and rediscovering hidden artistic talents through the Submit to Love project, which has spawned creations displayed in some of London’s best-known galleries

84 RE HA B S HO UL D B E FO CU S E D O N C L IE NT G OA L S 7 0 F IN D ING A VOI CE FOR R I CHI E After the #avoiceforrichie campaign went viral, and Richie Cottingham is now set to gain a voice of his own, NR Times meets the therapist who made it possible

Occupational therapist Kate Sheehan, recently seen on ITV’s Finding Derek supporting Kate Garraway and her family, discusses how vital it is for clients to set goals and be supported in achieving them

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Loneliness in lockdown - how have brain injury survivors been impacted?

Loneliness in lockdown among brain injury survivors is the subject of a new research study which hopes to shine a light on the ongoing issue of isolation.

While loneliness for the wider population was something rarely previously experienced prior to the COVID-19 pandemic, for those living with a brain injury, the everyday reality is often very different.

And through this new study, researchers hope to discover the true effect the pandemic and its necessity for survivors to stay at home - and in some instances shield for several months - has had and how their protective factors have impacted on that.

The project, by the University of Sunderland in conjunction with Headway, is currently gathering participants for its pioneering research, which will compare the experiences of people living with brain injury to those without.

Led by Dr Stephen Dunne, who has a long-standing research interest in social factors which affect brain injury and stroke survivors, he hopes it will both raise awareness of the ongoing issue of loneliness many people face, as well as helping to inspire action.

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“There is a dual focus to this project - loneliness is something known to the masses now more than ever before; it’s not just something felt by a particular part of the population. For a neurotypical individual, I think it has shown what life can be like to be lonely in ways they may never have known previously.

“An important point of our research is to try and understand how, for people with brain injury, their loneliness and their perceptions of loneliness have been affected during the pandemic - has this been heightened over the past year and been exacerbated by lockdown?

“Or have they actually felt less lonely than neurotypical individuals, as they have had the experience prepandemic of adapting to life like this, and already have the support strategies in place?

“But crucially, the future of this project isn’t to define loneliness, understand its impact, then drop it - we want to understand it so that we can facilitate the removal of barriers so we can bring about strategic improvements to the wellbeing of people living with brain injury.”

Dr Dunne and his team are seeking brain injury survivors nationally to take part in the research, which will be done by an online survey and an optional additional interview with the team remotely via Microsoft Teams.

“We’re at a crucial stage now where we appear to be coming out of restrictions, but the experiences of the past year are still very real for so many people,” adds Dr Dunne.

“We want to do this at the right time, before reintegration into society starts to happen and we are looking retrospectively, so we’re keen to hear the experiences of as many people as possible.

“We want to better understand loneliness and its impact, so we can help to bring about change for the future.

Understanding the journey of brain injury survivors over the past year is a key part of us being able to do that.”

For further information about the research study, or to share experiences through an interview with the research team, contact Stephen.Dunne@sunderland.ac.uk

NE W S

Temporary concussion substitutes ‘must be introduced by June 1’ give medical teams the appropriate environment to assess a player with a potentially serious head injury.

“The reality of the in-game situation is loaded with pressure. Medical teams can be presented with a situation where a globally broadcast match is on hold, awaiting their assessment. They have to make a potentially game-altering decision in a multi-billion-pound industry.

“We have no doubt medical teams act in the sole interests of the players. However, the rules do not do enough to support medical personnel. Pressure on them will be amplified with the return of crowds.”

Temporary concussion substitutes must be included in the current trials underway in the Premier League to safeguard the safety of players, players’ unions have said.

FIFPRO and the PFA have called for the introduction of temporary substitutes no later than June 1, and for the scope of the 18-month trial – which enables a team to replace a player who has sustained concussion, but on a permanent basis – be extended to include parallel trials for temporary substitutions.

In an open letter to IFAB, football’s lawmakers, FIFPRO – which represents over 65,000 professional footballers worldwide – and the PFA highlighted the cases of West Ham United’s Issa Diop and Sheffield United’s George Baldock in making their case.

“Player safety and welfare is paramount, and should be the only priority,” they say in their letter.

While both bodies were supportive of the

permanent concussion trials when introduced, such incidents – added to the new FIFPRO poll, which shows 83 per cent of 96 professional football club doctors at top-flight European club believe temporary substitutes should form part of future protocol – have shown that action needs to be taken.

“In England, since the trial began, we are aware of two incidents where a temporary substitution option would have better protected players,” states the letter.

“In each case, the players suffered from a head injury but, following an initial on-field assessment, continued to play.

They were subsequently removed when it emerged their head injury was worse than first thought.

“These cases underline our concern that permanent substitutions do not

The letter states that the inclusion of temporary concussion substitutions, which they propose should be tested in parallel with the current trial, will: • Provide medical teams with additional assessment time • Allow for the assessment to take place in an appropriate environment • Permit a match to restart with neither side numerically disadvantaged • Reduce pressure on players and medical staff to make quick decisions.

“In December 2020, we welcomed the decision by IFAB to invite competitions to trial permanent concussion substitutions,” FIFPRO and the PFA state.

“At the same time, we have remained in favour of testing temporary concussion substitutions. This has been our position for many years.

“Since the beginning of IFAB’s permanent concussion substitute trial, we have seen several incidents where the new laws of the game have fallen short of their objective and jeopardised player health and safety.”

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Game changing Parkinson’s test moves closer

Diagnosis of Parkinson’s disease could be made through a skin swab procedure, after research confirmed it it possible to identify the condition from compounds found on the surface of the skin.

Scientists at The University of Manchester have developed a world-first technique which works by analysing compounds found in sebum – the oily substance that coats and protects the skin – and identifying changes in people with Parkinson’s disease.

“We believe that our results are an extremely encouraging step towards tests that could be used to help diagnose and monitor Parkinson’s,” says Professor Perdita Barran, from the University of Manchester, who led the study.

“Not only is the test quick, simple and painless but it should also be extremely cost-effective because it uses existing technology that is already widely available.

“We are now looking to take our findings forwards to refine the test to improve accuracy even further and to take steps towards making this a test that can be used in the NHS and to develop more precise diagnostics and better treatment for this debilitating condition.”

The research has been funded by charities Parkinson’s UK and the Michael J. Fox Foundation as well as The University of Manchester Innovation Factory.

It comes after a recent survey of more than

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2,000 people with Parkinson’s, carried out

by Parkinson’s UK, more than a quarter (26 per cent) reported they were misdiagnosed with a different condition before receiving the correct Parkinson’s diagnosis.

The team, led by Professor Barran and the clinical lead, Professor Monty Silverdale at Salford Royal Foundation Trust, recruited 500 people with and without Parkinson’s.

People with Parkinson’s may produce more sebum than normal – a condition known as seborrhoea. Sebum is rich in lipid-like molecules and is one of the lesser studied biological fluids in the diagnosis of the condition.

Samples of sebum were taken from their upper backs for analysis.

Using different mass spectrometry methods, 10 chemical compounds in sebum were identified which are elevated or reduced in people with Parkinson’s. This allows scientists to distinguish people with Parkinson’s with 85 per cent accuracy.

High resolution mass spectrometry was used to profile the complex chemical signature in sebum of people with Parkinson’s and show subtle but fundamental changes as the condition progresses.

Detailed analysis showed changes in people with Parkinson’s in lipid processing and mitochondria. Problems with mitochondria are one of the hallmarks of Parkinson’s.

This means this world first testing strategy is not only useful in diagnosing Parkinson’s but also in monitoring the development of the condition.

The skin swab could provide an incredibly important new tool in clinical trials helping researchers measure whether new, experimental treatments are able to slow, stop or reverse the progression of Parkinson’s.

The study unveiled novel diagnostic sebum-based biomarkers for Parkinson’s, provides insight into understanding of how the condition develops, and links lipid

dysregulation to altered mitochondrial function.

The research team hopes the study could lead to a definitive test to diagnose Parkinson’s accurately, speedily and cost effectively. The team is now seeking funding to further develop the test and explore the potential for using the test to ‘stratify’ patients.

Working with the University of Manchester Innovation Factory, the team has patents filed for their diagnostic techniques and are planning to create a spin-out company to commercialise the new tests.

They are also working to use this approach to develop tests for COVID-19 as shown in research last week in EClinical Medicine as well as other conditions and are actively seeking investors interested in supporting the drive to bring this technology to market.

Professor David Dexter, associate director of research at Parkinson’s UK, adds: “We are proud to have part-funded this groundbreaking research which marks a significant step towards developing a quick and accurate test that can not only revolutionise the way we diagnose Parkinson’s, but also allow us to monitor how this debilitating condition progresses.

“Every hour, two more people in the UK are diagnosed with Parkinson’s and a significant portion of these people may well have been misdiagnosed with, and treated for, another condition before receiving their correct diagnosis.

“This has been compounded in the COVID-19 pandemic where people have been left waiting and have faced months of anxiety to confirm their diagnosis by a health professional.

“However, with this innovative test, we could see people being diagnosed quickly and accurately enabling them to access vital treatment and support to manage their Parkinson’s symptoms sooner.”

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World-first MS trial launches A world-first trial is being launched in the UK into whether drugs already on the market can prevent multiple sclerosis (MS) from worsening and even reverse the disabilities it causes.

The Octopus trial will investigate the potential benefits of using a number of different medications at once, in the hope of finding effective new treatments up to three times faster than if the medicines were trialled separately.

Octopus - named because of its many arms - marks the culmination of years of planning for the ‘mega trial’ for progressive MS. University College London has been announced as delivering the trial, with the MS Society announcing contracts have been signed, with Professors Jeremy Chataway and Max Parmar leading the research.

The initial drugs to be tested will be

up by merging lots of these trials into one.”

About 130,000 people in the UK live with MS. The condition arises when the immune announced later in the year, with hundreds system mistakenly attacks the fatty myelin of patients being sought to participate. The sheaths that wrap around nerves in the trial will be randomly assigned to have either brain and spinal cord. Without the lipid-rich standard care for progressive MS or standard coating, electrical signals travel more slowly care plus one of three drugs that doctors along nerves, are disrupted or fail to get hope will at least protect their neurons from through at all. the disease if not repair the damage done.

Through this multi-arm, multi stage (MAMS) In conventional trials, one group of people design trial, Octopus will test multiple take the potential treatment. Another drugs at once, comparing them with a single ‘control’ group take either an inactive control group, and are able to eliminate placebo or a treatment already available drugs from the trial at an early stage. for MS,” explains Dr Emma Gray, assistant More can then be added in, in a means of director of research at MS Society. effectively merging two trials.

And each treatment goes through several “Merging separate trials may sound 'phases'. You start with a small group of obvious,” says Dr Gray. people. If the treatment looks promising, “But launching a MAMS trial for MS needs you set up more trials with increasingly so many things to line up perfectly, from larger groups. hospitals around the country equipped to “Although this approach works, it takes a be trial sites, to the incredibly complicated really long time. Octopus will speed things statistics that underpin the design.”

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N EWS

Saliva test could diagnose concussion Concussion can be diagnosed using saliva, new research has found, paving the way for the first non-invasive clinical test for head injury which could be used in all levels of sport.

Building on previous research, which identified that the concentration of specific molecules in saliva changes rapidly after a traumatic brain injury, it has now been established – through a three-year study in elite rugby – that these ‘biomarkers’ could be used as a diagnostic test for sportrelated concussion.

Using DNA sequencing technology, the research team tested these biomarkers in saliva samples from 1,028 professional men’s rugby players competing in English rugby’s top two leagues – the Premiership and Championship.

The results of SCRUM (Study of Concussion in Rugby Union through MicroRNAs) have for the first time shown that specific salivary biomarkers can be used to indicate if a player has been concussed.

Additionally, the research – led by the University of Birmingham, in collaboration with the Rugby Football Union (RFU), Premiership Rugby, and Marker Diagnostics – has found these biomarkers provide further insights into the body’s response to injury as it evolves from immediately after trauma, to several hours and even days later.

The scientific breakthrough provides a new laboratory-based non-invasive salivary biological concussion test, which could have wide-reaching use and potential to reduce the risk of missing concussions not only in sport – from grassroots to

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professional levels – but also in wider settings such as military and healthcare.

In community sport, these biomarkers may provide a diagnostic test that is comparable in accuracy to the level of assessment available in a professional sport setting.

At an elite level of rugby, the concussion test may be used in addition to the existing World Rugby Head Injury Assessment (HIA) protocol.

Marker Diagnostics, a subsidiary of Swiss biotechnology company Marker AG, is in the process of commercialising the patented salivary concussion test as an over-the-counter test for elite male athletes. It has also obtained a CE Mark for test, which has been named MDx.100.

The team now aims to collect further samples from players in two elite men’s rugby competitions, to provide additional data to expand the test and develop its use to guide the prognosis and safe return to play after concussion and to further establish how it will work alongside the HIA process.

The team will present their findings and planned next research steps at the World Rugby Laws and Welfare Symposium to be held later this month.

Meanwhile, Marker Diagnostics and the University of Birmingham are also currently carrying out several additional studies to further validate and expand the test for use in different groups that

were not included in the SCRUM study, including women, young athletes and community sports players.

“Concussion can be difficult to diagnose, particularly in settings such as grass roots sports where evaluation by a specialist clinician is not possible. Consequently, some concussions may go undiagnosed,” says Dr Valentina Di Pietro, of the University of Birmingham.

“There are also concerns regarding the long-term brain health of those exposed to repeated concussions.

“A non-invasive and accurate diagnostic test using saliva is a real game changer and may provide an invaluable tool to help clinicians diagnose concussions more consistently and accurately.

“In professional sports, this diagnostic tool may be used in addition to current head injury assessment protocols and return to play evaluation to ensure the safety of individuals.”

Dr Simon Kemp, RFU’s medical services director, says: “This study is an important part of the portfolio of collaborative research initiatives the RFU undertakes into concussion.

“While still a way from having something that can be used in community rugby, it is extremely encouraging to now be able to start to develop a rapid and non-invasive test which could add real value particularly at a grassroots level of the game.”

“The findings from the study are clearly promising and highlight the potential for salivary biomarkers to further support clinical decision making and the accurate identification and diagnosis of concussion in a range of different sporting and nonsporting settings,” adds Dr Matt Cross,

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head of science and medical operations at Premiership Rugby.

“Premiership Rugby and the Premiership clubs support a number of player welfare focused research projects, and we are looking forward to continuing to collaborate and support further research in the next phase of this specific project from 2021-22 onwards.”

The study, fully supported by The Rugby Players’ Association, saw the team obtaining saliva samples from male professional players in the top two tiers of England’s elite rugby union competition during the 2017-18 and 2018-19 rugby seasons.

Saliva samples were collected pre-season from 1,028 players. They were also collected from 156 of these players during standardised World Rugby head injury assessments (HIAs) at three time points – in-game, post-game, and 36-48 hours post-game.

The HIA protocol, used by rugby medical staff, includes a neurological examination, a series of cognitive tests and evaluation of gait and balance to determine if a player has been concussed.

‘Control’ samples were also collected from 102 uninjured players and 66 players who were removed from the game due to musculoskeletal injuries.

Using samples collected during the 201718 season, the team identified a panel of a combination of 14 salivary biomarkers – known as small non-coding RNAs or sncRNAs – that was highly accurate, at 96 per cent, in identifying concussed players from all other groups.

This included players with suspicion of mild traumatic brain injury who had a concussion ruled out after a structured HIA; uninjured controls from the same game; and players who had suffered musculoskeletal injuries.

The panel was prospectively tested during the 2018-19 season, and the research showed it could successfully predict whether players would be positive or negative for concussion via the HIA protocol in 94 per cent of cases.

Revolutionary neurorehab tech platform launches A tech-based platform credited with revolutionising rehabilitation for the neuro sector has gone live, ahead of its national roll-out.

Neuro ProActive has been created to enable a fully multi-disciplinary approach to rehabilitation, covering both inpatient and community care and involving patients and their families in the process.

The app - which supports the spectrum of neurological conditions, from brain injury to stroke, dementia and Long COVID - enables greater cohesion between therapists through its end-toend message and video calling encryption, which allows remote services and patient monitoring to be done via one single platform.

Neuro ProActive - the successor to the award-winning Stroke Active - has been in development for more than three years and is now live and in use at UCLH Queen Square today. It will be used in its Upper Limb Neurorehabilitation Programme.

The app is set to launch into six NHS Trusts initially, with national and international expansion planned in the near future.

Professor Nick Ward, clinical lead on the Upper Limb Programme, has been a key advisor to Ian Pearce on the development of both Stroke Active and Neuro ProActive.

Ian, whose father had a stroke in 2017, was inspired to develop a platform to increase co-ordination in care to help families like his.

Whilst having no background in healthcare or tech development, Ian created Stroke Active - which was named Innovation of the Year Award at the 2019 European Neuro Convention, in recognition of the role it played in revolutionising communication between stroke professionals and promoting patient self-management and has since created Neuro ProActive.

Working with healthcare software developers L2S2, Neuro ProActive has been created as an entirely separate platform which has been built from scratch to be entirely fit for purpose for the whole neuro sector.

“After three years of consultations with patients, families and AHPs, it’s great to see Neuro ProActive deployed at UCLH,” says Ian. “Nick and his team were involved in the platform’s development from an early stage. The feedback we’re now getting from therapy teams all over the UK is extremely positive.

“The pandemic has severely curtailed the provision of rehab services and Neuro ProActive helps NHS Trusts adhere to NICE guidelines on patient care in a post-COVID world.”

Speaking to NR Times about its role in neuro care, Ian says: “Frequently, there is a gap between inpatient and outpatient – early supported discharge too often is just early discharge, you hear stories of people waiting six weeks before their therapy starts, which makes things so much more difficult further down the line.

“But by using the platform, we have enabled patients to connect with their community rehab team. We work across all six disciplines – neurophysio, speech and language therapy, occupational therapy, diet, arts and neuropsychology – and the whole MDT can contribute to the dashboard in real time.

“Enabling patients to have the ability to self-manage, while also including family members in the rehabilitation process, is so important. Through using the app, everyone can be involved in the process. Each patient has their own message board too, so can instantly get in touch with their team.”

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Largest clinical trial in Huntington’s disease discontinued The largest clinical trial in Huntington’s disease, which has prompted global interest and excitement since its launch three years ago, has been discontinued.

The shock announcement was made by pharmaceutical company Roche, which announced the end of its Phase III GENERATION HD1 study of tominersen in manifest Huntington’s disease (HD).

“This is very unfortunate news to deliver on the tominersen Phase III study and we know it will be especially difficult for people with Huntington’s disease to hear,” says Dr Levi Garraway, Roche’s chief medical officer and head of global product development.

“GENERATION HD1 is the largest clinical trial in Huntington’s disease to date and we do know that the data generated will significantly advance our understanding of huntingtin-lowering as a potential treatment approach.”

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The decision was made based on a review by the Independent Data Monitoring Committee (iDMC) based on the “investigational therapy’s potential benefit/ risk profile for study participants”.

When the project was launched in 2017, hopes were high of a breakthrough in finding a treatment to stop or slow the progression of Huntington’s disease, a genetic, progressive condition that causes the nerve cells in the brain to break down, causing problems with a person’s ability to think, move and function, leading to increasing disability and loss of independence.

GENERATION HD1 comprised a randomised study, completed across multiple centres, which evaluated the efficacy and safety of treatment with tominersen in people with manifest HD over 25 months.

Study participants were randomised to either 120 mg every two months, or 120 mg

every four months, of intrathecal injections of tominersen or placebo. Tominersen is an antisense oligonucleotide (ASO)—a snippet of DNA that is intended to block production of a mutant protein, huntingtin, that causes Huntington’s disease.

The study recruited 791 participants from 18 countries around the world.

“We would like to thank all of the individuals and families participating in the study for their contribution, as well as the broader HD community for their commitment and collaboration,” adds Dr Garraway.

Roche added in a statement that it intends to continue following participants for safety and clinical outcomes, without the dosing of the investigational medicine or placebo, and will share its findings of the Phase III study once full data has been collected and analysed.

T HE RAPY

Specialist centre increases capacity A specialist residential care provider has released new accommodation for adults with acquired brain injury.

Richardson Care has made three new ensuite rooms available at The Coach House in Northampton, bringing the total number of rooms to 11. Further rooms are expected to be released later in the year.

“Despite the difficulties that the pandemic is causing, we are still receiving a lot of

referrals for our specialist brain injury care, so we’re very pleased that our residential capacity is increasing,” says Gill Ayris, admissions and referrals Manager.

The Coach House is the newest of six specialist residential care homes owned by Richardson Care.

Opened in 2019, it is a listed building that was significantly refurbished and extended, which means that the home can meet the specific and varied needs of people with acquired brain injury while retaining the character of a historic building.

Laura Richardson-Cheater, director of Richardson Care, says: “We have a clear design philosophy at Richardson Care. We believe that every home should feel like

‘home’, not an institution, and that providing the right environment helps our service users to engage in their therapy and rehabilitation.

Having naturally lit, uplifting spaces also improves well-being and quality of life.

“As an independent family business, with a 30-year track record, we can choose to take a long-term view. We invest in a highquality sustainable homes to provide the best environment. This benefits all of our service users, whether they need short term rehabilitation or a home for life.”

If you’re looking to place someone with acquired brain injury who needs specialist residential care, call the admissions and referrals team on 01604 791071 or go to www.richardsoncares.co.uk

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

• Portfolio of services to meet a variety of needs • Innovative person-centred care • Unique ‘family’ environment • Focus on social integration • 30-year proven track record Proud to be an independent family business.

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www.richardsoncares.co.uk The Richardson Mews, Kingsland Gardens, Northampton NN2 7PW

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Groundbreaking study into COVID neuro consequences The effects of COVID-19 on the brain are to be examined in a new groundbreaking study involving all four UK nations.

The COVID-19 Clinical Neuroscience Study (COVID-CNS) will look at 800 UK patients who were admitted to hospital with COVID-19 and had neurological or neuropsychiatric complications, to understand how these problems occur and develop strategies to prevent and treat them.

The first-of-its-kind project involves more than a dozen research centres from across the UK and forms an integral part of the National Institute of Health Research BioResource, which provides research infrastructure to speed up clinical research and clinical trials.

COVID-CNS has been awarded £2.3m

by UK Research and Innovation and the

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Department of Health and Social Care to help advance its work, which is led by the University of Liverpool in collaboration with King’s College London.

“COVID-19 patients frequently suffer brain complications during the infection and are left with brain injuries which can have lifelong consequences,” says project co-lead Dr Benedict Michael, senior clinician scientist fellow at the University of Liverpool and consultant neurologist at The Walton Centre NHS Foundation Trust.

“Similar problems have been seen in previous pandemics, including Spanish influenza over 100 years ago, but how and why this occurs remains poorly understood.

“Without understanding how the virus causes these problems, we are not able to know which existing medications to use or to develop new medications to treat these neurological effects. We’re going to look at cases in detail, exploring clinical data, and laboratory and imaging markers of brain inflammation and injury.”

“These brain complications of severe COVID-19 infection could cause long terms problems for patients and their families,” says project co-lead Professor Gerome Breen, professor of Psychiatric Genetics at the Institute of Psychiatry, Psychology & Neuroscience, King’s College London.

“We want to compare patients with these complications to similarly ill hospitalised patients who did not have these problems. We will monitor their outcomes and integrate social and environmental risk factors into our analyses alongside all the biology information we will measure.

“This project brings together scientists and clinicians in all four UK nations, across neurology, psychiatry, genetics, epidemiology and immunology. By working together, we aim to rapidly improve our understanding and design better treatments.”

The Stroke Association is part of the project’s Patient and Public Involvement Strategy.

Dr Richard Francis, head of research, adds: “We are pleased to be supporting such a crucial COVID-19 research study.

“We know that patients around the country are suffering the effects of this awful pandemic so to be part of a study that can help us understand these aftereffects better, and even prevent this happening to other people, is enormously important.”

NE W S

Impact of head injuries ‘can last decades’ Head injuries can impact on memory and thinking decades later, new research has revealed.

People who experience head injuries in their 50s or younger were found to score lower than expected on memory and thinking tests aged 70.

Head injuries did not appear to contribute to brain damage characteristic of Alzheimer’s disease, but might make people more vulnerable to dementia symptoms, the study by UCL, funded by Alzheimer’s Research UK, concluded.

“Here we found compelling evidence that head injuries in early or mid-life can have a small but significant impact on brain health and thinking skills in the long term,” says Dr Sarah-Naomi James from UCL. “It might be that a head injury makes the brain more vulnerable to, or accelerates, the normal brain ageing process.

“It looks like head injuries can make our brains more vulnerable to the normal effects of ageing. We have not found evidence that a head injury would cause dementia, but it could exacerbate or accelerate some dementia symptoms.”

The study involved 502 volunteers from the Insight 46 study which has been following participants since their birth in the same week in 1946.

At age 53, the volunteers were asked ‘Have you ever been knocked unconscious?’ to see whether they had ever sustained a substantial head injury, and then around

age 70, the study participants underwent brain scans and they took a suite of memory and thinking tests.

The researchers found that 70-year-olds who had experienced a serious head injury more than 15 years earlier performed slightly worse than expected on cognitive tests for attention and quick thinking.

They also had smaller brain volumes (by one per cent) and differences in brain microstructural integrity, in line with evidence from previous studies, which may explain the subtle cognitive differences – although they did not have data on the frequency, severity or cause of the head injuries, to see if long-term impacts might have been even greater for certain people.

The researchers did not find any differences in levels of the amyloid protein, implicated in Alzheimer’s disease, or other signs of Alzheimer’s-related damage.

“This adds to a growing body of evidence linking head injury with brain health many years later, with yet more reasons to protect the brain from injury wherever possible,” says Professor Jon Schott,

Alzheimer’s Research UK’s Chief Medical Officer, who also leads the work.

Dr Susan Kohlhaas, director of research at Alzheimer’s Research UK, says: “With millions of people around the world experiencing head injuries every year, reducing the risk of sustaining these injuries should be an important public health goal.

“Looking for brain shrinkage and other signs of damage soon after a head injury, are important steps towards understanding how brain injury is related to brain health and long-term thinking and memory problems.”

Lauren Pulling, CEO of The Drake Foundation, which funds research on head impacts in sport, adds: “These new findings add to the growing evidence base showing that head impacts can have tangible, longterm effects on the brain.

“With this in mind, and in addition to further research, it is essential that sport’s governing bodies take note and use a common-sense approach to universally minimise players’ risk of head injury, right through from grassroots to elite levels.”

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TECH N OLOGY

Will paralysed patients be walking again by 2024?

In one of the most exciting developments for spinal cord injury patients of recent times, the long-awaited breakthrough in regaining movement appears closer than most imagined. Deborah Johnson speaks to Dave Marver about the pioneering work of ONWARD in making this possible

People who have been paralysed for years could be enabled to stand and walk again through revolutionary technology set to launch within the next four years and a breakthrough in upper body movement expected even sooner.

The groundbreaking work of ONWARD is set to deliver the long-awaited advances for people with spinal cord injury in enabling them to regain the ability of movement.

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Through the development of its ARC EX and ARC IM technologies, ONWARD is committed to delivering life-changing outcomes for spinal cord injured people.

Trials of its ARC EX device got underway in the UK - at the Queen Elizabeth University Hospital in Glasgow United States, Canada and the Netherlands, in January, with the technology expected to be commercially available in late 2023.

An external, non-invasive platform, the ARC EX is set to deliver movement and strength in the hands and upper body of people with spinal cord injury, compared to rehabilitation training alone.

And in one of the most keenly-awaited health tech breakthroughs of recent years, its ARC IM technology - an implantable pulse generator and lead which stimulates the spinal cord and is controlled by wearable components and a smartwatch - is set to go into trials mid next year, with its commercial launch anticipated in 2024.

Alongside its potential to enable paralysed people to stand and walk again with little or no assistance, other benefits could include improvements in blood pressure regulation, sexual function, bladder and bowel control and reduction in spasticity.

“This is very real and it is happening, and we hope it will bring strength, function and meaningful quality of life to so many people,” Dave Marver, CEO of ONWARD, tells NR Times.

T E C HNO LO GY

The technology breakthroughs come after many years of groundbreaking pre-clinical research, which led to the formation of ONWARD - formerly known as GTX Medical - in 2014 to take this forward.

Bringing together researchers and surgeons in Switzerland, working together at the Swiss Federal Institute of Technology (EPFL) and Centre Hospitalier Universitaire Vaudois (CHUV), the company is backed by many of Europe’s leading life science venture capital investors in bringing its solutions to reality.

“A lot of funding has gone into this field of research and we are taking this forward to create the products which can translate into commercial reality globally,” says Dave.

“We have put together a great team to build this company, raise the capital needed to fund the trials and the R&D, and this is a very fulfilling challenge and responsibility for all of us.

“We are well on the way towards ARC EX and we have started pivotal trials at 15 sites worldwide, and we hope to launch this in late 2023.

“We know that the movement and function of the upper extremities is what people with spinal cord injury value the highest, so we are targeting that first.

In the near future, that should be a reality.

“Following that will be our implant, which will help unlock more autonomous benefits. We expect the pivotal trials to begin in mid 2022 with commercialisation most likely in 2024.”

Despite the COVID-19 pandemic and the many challenges it has presented to global businesses, ONWARD has managed to continue with its work as planned.

“We’ve been affected like everyone else in having to work from home and close our offices, we also have a growing team and have had to bring people into the business with limited interactions, but the pandemic has not impeded us,” says Dave.

“Our vision of helping people with spinal cord injury is very unifying and we are all dedicated to trying to achieve that. We’re all highly motivated in the team, as are our research partners, and we’re working towards delivering our platforms in the very near future.”

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INTERVIE W

Inspired by Max, but for everyone.

After seeing her son Max’s struggle to find socks to cover his orthotics, having lived with the effects of a perinatal stroke since birth, Steph Degodny set about designing some herself.

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INT E RVIE W

And from that desire

to solve a problem for her own child, has emerged a thriving business making socks for children with disabilities across the United States, with a fastgrowing presence in the mainstream market through what Steph terms the ‘inclusion revolution’.

Max & Me Gear now sells long socks in an array of designs - all of which have been confirmed as being ‘cool’ by their inspiration, Max himself - and are helping to transform the confidence of children and young people at formative stages of their lives.

For Max, now 12, who lives with ongoing challenges from his stroke, including hemiplegia on his right side, behavioural challenges and the need for additional learning support, his difficulties with daily practical tasks are now helping to improve the lives of countless others.

“The socks happened because a problem came to light that Max had, which it turned out so many other kids and families were having too,” Steph tells NR Times.

“This is now so much more than I ever set out to create, but to know it’s having an impact on families like ours and kids like Max is an amazing thing.

“It’s also given Max a greater purpose, he’s been so empowered by it - but he does get so embarrassed when he gets recognised and people come up to him in the street. I say ‘Max, you’re the face of the business, enjoy it!’”

From the earliest days of Max’s life, Steph and her husband were warned of the challenges that might lie ahead for their son - but typical of Steph’s ‘can do’ approach, she turned the prospect of what may not be possible into what can be done.

T he so c k s hap p e ne d be c a u se a probl em came to l i g ht t ha t Ma x ha d , whi ch i t t u r ne d o ut s o ma ny ot he r k id s and f am i l ie s w e re hav ing, too. This i s now so m uc h mo re t ha n I eve r set ou t to create, bu t to k no w it ’s having a n imp act on f am i l ie s l ike ou r s a nd k id s like Max i s an a m a z i ng t hing.

“I remember the doctor looking at me saying ‘We don’t know whether Max will ever walk, we don’t know whether Max will ever talk,’ and those feelings of utter shock and disbelief, like I had left my body,” recalls Steph.

“But by the time the doctor had explained this to my husband, I’d already reached ‘OK, so what are you going to do?’ I was calling people, sharing my story, reaching out to people who I knew could help us, who had been through what we were going through.

“And I think that has been the approach with Max & Me Gear, when you know the problems you face, you know others will experience the same things, so let’s do something about it.”

Max works alongside his mum to create socks which conceal orthotics and have the same pattern when folded over, which was the main issue prior to the creation of Max & Me Gear.

“We live in a cold climate and Max loves basketball, so he wears basketball shorts all year round, but he needs to wear long socks too,” says Steph.

“I’d get him extra large men’s socks, so they could fold down over the orthotic he continues to wear on his right leg, but the pattern would then be upside down.

On his favourite pair of socks, which have his idol Steph Curry (who plays for his favourite basketball team, Golden State Warriors) on them, his face would be upside down when folded over.

“So I wanted to create some cool socks he’d be happy to wear, which people couldn’t tell if they’d been folded over or not.”

Steph set about designing socks - approved by Max, of course - and quickly realised the demand.

“I get so many parents with older kids saying they wish this was around when their child was wearing orthotics, and so many who are so pleased to have

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INTERVIE W

found them for their kids now - but as well as the market for kids with extra needs, they’re actually so popular with everyone,” says Steph.

“I’d say half of our sales now are from people who aren’t from the disabled community. People just love cool socks.

“We have one customer who’s an avid horse rider and she says they’re the greatest things, and there’s another who has MS and she has cramps in her legs and hates trousers them, but these socks have helped her so much.

“I think we’re seeing such an inclusion revolution and the stuff that’s designed for disabled people is actually really cool.

“When Nike launched their trainers inspired a kid with Cerebral Palsy who wrote to them, that you don’t need your hands to put on, they sold out instantly - and the people buying them didn’t have a disability, they just loved them because they’re cool.”

Such has been the inspiration created by Max & Me Gear, Steph is now creating the means for people to donate the cost of a pair of socks, which can then be donated to children who need them.

“It started as one of my friends bought 25 pairs of socks and said ‘Give them to kids who need them’. People are so kind and reach out to me to say ‘I don’t need the socks, but please find someone who does’,” says Steph, who also donates $1 from every purchase to We’re All Working on Something (WAWOS), an organisation dedicated to changing the conversation around disability.

“Having a child with extra needs is expensive and I wish our socks could be free, but by creating the means for people to donate the money to buy those socks for them, we are helping with that. If parents who need them reach out to me, I’ll get them to their kids.

“My IT guy is creating that on our website now, he loves what we do so much he barely charges me. He’s on a month vacation at the minute but is still working on our website from coffee shops, which just shows the kind of commitment that goes into making Max & Me Gear happen.”

And as well as the impact Max & Me Gear is having on children across the United States, Steph, as a CEO of a fast-growing e-commerce business, is also proud to be a woman in business.

“I have three nieces who I’m really close to, andm m, they have watched me take the tragedy we faced with Max’s diagnosis and problem solve from there - they’ve watched me take the lead and grow a business, and as a female entrepreneur I’m really proud of that,” says Steph.

“I always say I’m just a mom who understands, who saw a problem and created a solution. If I can inspire people too, then that’s an amazing thing.”

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As w el l as the m arket for ki ds w i th ex tra needs, they ’ re actual l y so popul ar w i th ever yone. I ’d say hal f of our sal es now are from peopl e w ho aren’ t from the di sabl ed comm uni ty.

Peopl e just love cool socks.

INT E RVIE W

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INTERVIE W

After rebuilding his life following two life-threatening strokes aged just 14, Connor Lynes now dedicates himself to supporting other young survivors follow his lead.

Much more than a survivor “I’m no-one special, just a kid who refused to give in.”

But to the countless people who are inspired by his story of recovery, strength and optimism, Connor Lynes is so much more than that.

Having had two strokes aged only 14 after sustaining a head injury while playing rugby, leaving him fighting for life, Connor now dedicates himself to supporting others, both through fundraising and by showing what life after brain injury can be.

Now aged 20, he has his own Connor Lynes Foundation, is a patron for Life For a Kid - which supports children who need life-changing operations, and to which Connor handed over a sensory room in November 2017, aged just 16 - and is constantly in touch with fellow stroke and brain injury survivors around the world to help guide them through their darkest days.

His work has won national recognition, a Diana Award - set up in remembrance to Diana, Princess of Wales, to acknowledge the efforts of young people who change the lives of others - and even a personal message from the Duke and Duchess of Cambridge to mark his recent birthday.

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INT E RVIE W

H e j u s t s ee s hi ms e l f a s no t hi ng s p e c i a l , b u t s o m any p e o pl e s e e hi m a s a n i n s p ir ation a nd he re a l l y i s . T here i s l i fe after br ain i nj u r y a nd C o nno r i s s ho w i ng that ever y d ay i n s u c h a p o s i t i ve w ay.

“You’re now much more than a survivor,” the future King and Queen of England said from their official Twitter account.

His latest fundraising challenge will see Connor walk from Hull Royal Infirmary to Leeds Children’s Hospital to raise money for three charities - the Motor Neurone Disease Association, inspired by Connor’s rugby idol Rob Burrow; State of Mind, which helped Connor with his mental health after being diagnosed with PTSD,

and the L52 children's neurological ward at Leeds General Infirmary.

And all of this while battling the ongoing effects of his strokes which affect his life daily, including non epileptic disorder, PTSD, serious headaches, dizziness and fatigue, and loss of feeling in his arms and legs.

For Sara Lynes, Connor’s aunt who has raised him from the age of three, Connor is a constant inspiration.

“I am so proud of him and to be honest, it’s him who has kept me going a lot of the time,” she says.

“He is such a positive person and a really lovely young man, he has so much positivity every day. After all he’s been through, you might think he could be angry with the world, but he is anything but.

“Connor dedicates himself every day to helping other people. There are days when he goes back to bed between doing bits of charity work, he is still very much affected by the fatigue caused by his strokes and some days are very hard.

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INTERVIE W

I think when yo u ’re 1 4 , yo u d o n’ t k no w about s t roke s - eve n w he n I f o u nd o u t t ha t he’d had a s t roke , my i ni t i a l rea c t i o n w a s ‘ He’s too you ng f o r t h a t to ha p p e n’ . B u t i t do es hap p en, to k i d s m u c h yo u ng e r t ha n Co n nor too.

“But he never gives up, not ever. He will always be there for people who need him.”

And that determination and fighting spirit for which Connor is now known was never more needed when he faced his battle for survival after a rugby injury six years ago.

“Connor ran into two big lads, which caused him to jar his neck, but he also hurt his ribs and had pain there,” recalls Sara.

“We got him checked out, but as he was fine and showed no signs of the head injury, he only got medical attention for the injury to his ribs. There were on signs whatsoever of anything else being wrong.”

But what transpired was that when he jarred his neck, Connor has torn an artery.

Having got out of bed feeling sick and dizzy during the night, Connor was found on the bathroom floor unable to walk, talk, and with no feeling in one side of his body.

He was found to have had an arterial thrombosis

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stroke, and then experienced a further stroke a week later.

“It was absolutely horrific, just a nightmare,” says Sara.

“He was put into an induced coma and to be honest, I didn’t think there was much chance of him coming out of it.

“When he went into surgery and we were there waiting to see if he would survive, it was the worst time. Just absolutely horrible.”

But happily Connor did pull through, and from his recovery came a desire to help others in his position.

“He wanted to be there for other young people, to help show them having a stroke is not the end of the world and you can rebuild your life,” says Sara.

“I think when you’re 14, you don’t know about strokes even when I found out that he’d had a stroke, my initial reaction was ‘He’s too young for that to happen’. But it does happen, to kids much younger than Connor too.

“When a child has a brain injury, they change and the family changes too. It’s something you never get over and even now we’re finding things out about Connor we didn’t know in the beginning.

“It’s such an unknown and scary time and that’s why Connor now wants to help others to get through it.

As well as raising money, he’s always on social media, responding to people who have contacted him, reaching out to others, and supporting them in any way he can.”

As the impact of his support gathered pace, Connor was invited to meet the Duke and Duchess of Cambridge after being nominated for a BBC award.

A year later, he met the Royal couple again after receiving his Diana Award.

“William remembered him from that first meeting and knew all about his story, which Connor was absolutely delighted about. William, the future King of England, must meet thousands of people but he remembered their last meeting and what had overcome and what he’d achieved,” recalls Sara.

“He and Kate are lovely people, very down to earth, and Connor didn’t expect that birthday message from them at all but was of course absolutely delighted.”

Going forward, Connor remains committed to doing all he can for other young survivors.

“He just sees himself as nothing special, but so many people see him as an inspiration and he really is,” adds Sara.

“He will keep going and do as much as he can. There is life after brain injury and Connor is showing that every day in such a positive way.”

CASE MANAGEMENT

The Power of Community – Welcome to the 3HUB Model: Why does community and collaborative working create a positive, dynamic environment in which case managers can truly maximise client recovery?

Community Organising is nothing new, yet it has proven itself to be a powerful tool to bring people together, usually to overcome shared concerns and social injustice. Community organisers reach out to listen, connect and motivate individuals to build their collective power. One of its most famous adopters, Barack Obama, started his political career as a Community Organiser and continued to use it throughout his time in office even when he became President of the United States.

Having experienced Community Organising firsthand, 3HUB’s Directors could see that a similar model could be adopted to empower and reward experienced and committed case managers to achieve the best possible outcome for their clients and their families.

The aim of the community is the same as any Community Organising team - to bring together people with shared interests and help them work collaboratively towards a common goal. The 3HUB Community model offers Case Managers who are fully qualified healthcare professionals, membership of a structured and well governed case management community with the common aim of providing an individualised and comprehensive case management service to their clients.

The community operates on two levels. Firstly, the platform provides members with the necessary tools of their trade; templates, policies, office

To be g in wi t h I w a s ove r w he lme d a nd anx ious ab o u t l e av i ng a C M co m p a ny ho w eve r I w a s he l pe d a nd s up p o r ted eve r y st e p o f t he w ay 26

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administration and all-important tech support for operations, record keeping, invoicing and HR and payroll support. Secondly, led by the Directors, the community operates collaboratively to support each other, through expert knowledge sharing, clinical advice, training, supervision, structured peer governance and holiday and sickness cover.

Referral streams are a joint effort between the 3HUB platform and the community - we encourage all members to spread the word about how well the community works to promote and encourage greater understanding and engagement from referrers.

The professionalism and enthusiasm of the 3HUB members to grow their businesses and collaborate and support each other is testament to community organising in action and is very rewarding to be a part of.

The 3HUB Community provides a safe, supportive and innovative environment for Case Managers to work independently and excel at what they do best - helping clients rebuild their lives.

What our 3HUB Community Members say: “3HUB provides the professional scaffolding for me to practise with grounded confidence. It connects me to like-minded realistic colleagues with a wealth of knowledge and experience to share. The Directors each bring a very different and special skillset; this cultivates a high class, ethical, creative culture that I am proud to be a part of.”

“Very supportive in business, IT, clinical and day to day work. Access to a wealth of knowledge from peers, Directors and office staff. 3HUB provides support, direction and reassurance that although independent, you are not alone!”

“Without 3HUB I would not have taken the steps to become an independent CM. I feel that they have

CA S E M ANAG E M E NT

provided me with the advice, tools and support to give me the confidence and ability to be where I am today.

To begin with I was overwhelmed and anxious about leaving a CM company however I was helped and supported every step of the way.”

How does the 3HUB Community approach benefit our clients?

Communication and collective support: Collectively the 3HUB community has many decades of experience (and all members have at least 5 years of clinical experience). This expert knowledge is accessible via numerous 3HUB run platforms including formal and informal training sessions, case management forums and online messaging services. These communication networks within the community directly benefit our clients and their families, whether it is problem solving a tricky clinical issue or gathering advice about local therapeutic resources to enable a client project to move forward.

Well supported, empowered Case Managers make innovative client advocates: High levels of empowerment, collaboration, and creativity within an organised community or workplace engender innovation. 3HUB members are supported to become independent decision makers and businesspeople. They are proactive about engaging with their governance structures to keep their practice current and relevant. Access to the knowledge and experience of other likeminded professionals within the community allows them to deliver their service confidently and effectively to achieve measurable outcomes for their clients.

In short, 3HUB Case Managers are effective and well governed. They have the freedom to go the extra mile for their clients, free from organisational bottlenecks.

What clients say about our members: “My CM is a consummate professional and I'm very blessed that she's my case manager. She helps me with lots of stuff, including paperwork, making phone calls and supporting me at appointments.

During the Covid19 lockdown she has maintained regular contact with me, via phone calls and Whatsapp. If there is an award for Case Manager of the year, my CM should be nominated and win.”

“P is always available and gets what needs to be done very quickly for us, she’s absolutely brilliant.”

Conclusion The power of the community approach lies in the active collaboration of our professional members.

Support and empowerment of individual Case Managers coupled with collaboration and knowledge sharing within the community has created an agile collective of professionals who have the autonomy and confidence to innovate and deliver the best for their clients. 3HUB actively demonstrates the collective power of well led, community working.

If you are interested in finding out more about the 3HUB Community please visit their website: threehub.co.uk

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TH ERAPY

Music therapy should be a frontline resource Music therapy should be commonplace in frontline care, particularly during the times of isolation brought about by the pandemic, a leading clinician and teacher has said.

Professor Kathleen Howland says the power of music can have an immeasurable impact on patients, from those in recovery through to those at the end of their lives.

“I absolutely contend that music should be a frontline resource. For someone dying in isolation, music is the sound of love. It can help with grief in a way that nothing else can touch,” says Kathleen, who has practiced in music therapy for over 35 years.

As one of only five dual-qualified music therapists and speech language pathologists (CCC-SLP) in the United States, Professor Howland has worked widely with patients at all stages of recovery during her career, particularly those with neurological conditions.

And while the benefits of music in rehabilitation are widely known, Professor Howland - also a music therapy tutor at Berklee College of Music - is keen to point to its impact for patients in hospital settings.

“When people are socially isolated from their loved ones, music can be very powerful,” she says.

“In a hospital, it can be a very saturated environment with the noice of medical machines and alarms, but

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what can be very aesthetically pleasing is to take someone’s musical preferences and balance them with silence.

“I’ve been working with a hospital in Connecticut and their cardiac care patients, and music can provide a sense of order and hope.

“There is also the work of Brian Schreck in his creation of Music of Heartbeats, which is spreading like wildfire in the United States in its popularity. It takes the heartbeat of a loved one who is going to pass away and uses that as the bass to some music they loved.

“This is recorded by therapists with the nursing staff, and can then be sent to their family as something they can keep and treasure forever.

As well as having their heartbeat, their music will be with it.

“The power of music is such a powerful thing - it is the sound of love.”

Professor Howland has worked extensively with neuro patients during her career and is hugely passionate about the impact it can have on their rehabilitation.

“Music is a brain-based intervention for brain-

T HE RAPY

I’m alw ay s lo oki ng to u s e rea l l y fu ncti o na l mo ti va ti o n to f o rc e t he ir neu rolo gi c a l ha nd a nd p ush t hro ug h that d a m a ge based disorders - period,” she says.

“In the United States, the changes in insurance have limited access to the proper therapy they need, which is absolutely shameful. It can be a choice of whether you want to walk or talk, because you can’t afford both, and often it’s the walking that happens as that’s easier to achieve.

“But in my work as a speech therapist, the power of music can help so much. There was one man who had a stroke, he came to me three times a week for a year and a quarter - I worked him good!

“If people have the opportunity to rebuild their neural circuitry and rebuild their speech capability, then we can vary that with gait work so they don’t get fatigued. But I’m always looking to use really functional motivation to force their neurological hand and push through that damage.

“There was once I was accompanying the man on a trip, I was his companion, and my daughter had to travel with us. We were at the airport having dinner and my daughter wanted dessert. I said she couldn’t have it, but he wanted her to. I said to him ‘If you want her to have it, then you order it for her’.

“So through using melodic intonation therapy (MIT) techniques we’d been working on, I sang ‘Key Lime Pie’ and he repeated it, he ordered the dessert for my daughter.

“The brain doesn’t have to work very hard if it knows what to do - something so familiar as Happy Birthday can come easily even in acute cases - so I’m always looking for things that challenge and push and melodic intervention can help to provide those opportunities.”

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COVER STOR Y

OTParvos and the HandyRehab

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C OVE R S TO RY

Next generation rehabilitation technology lands in the UK! STEPS Rehabilitation lead the way in new world-class robotic and virtual reality technology.

STEPS rehabilitation is now home to the very latest in cutting edge rehabilitation technology equipment. Already known for its truly holistic approach to rehabilitation care, the pioneering facility in Sheffield has been rubbing shoulders with tech innovators in Singapore and Switzerland to become the first place in the UK to provide clients with access to new world-class robotic and virtual reality technology.

We talked to STEPS Founders, Jules Leahy, Business Development Director, and her sister, Toria Chan, Clinical Director, about this exciting development.

UK’s First Fourier Intelligence RehabHub Fourier Intelligence is a Singapore-based technology company that develops pioneering exoskeleton and rehabilitation robotics. By combining the expertise and experience of researchers, therapists and patients, they excel in developing new robotic solutions to support the rehabilitation process and lives of patients.

“We’re offering this new tech in conjunction with Thor Assistive Technologies” reveals Jules Leahy.

“We’ve been working with the founder, Stephen Ruffle, for a while now with ReWalk Exoskeleton , and we know just how much clients can progress with the assistance of the right technology.”

The suite of equipment includes the latest in cycle motion, arm, wrist, finger, and ankle rehabilitation robotics. “Clients can also access the pioneering OTParvos. It can be used alone or in conjunction with the HandyRehab” explains Toria Chan.

“These amazing pieces of kit used together provide a portable intelligent solution for therapy, supporting the functional rehabilitation of the upper limb, fine motor skills of the fingers, hand-eye coordination and cognitive ability.

They allow clients to undertake training using everyday objects with the assistance of a lightweight robotic glove, with quantifiable data being recorded in real time enhancing the rehabilitation process.

We can’t wait to see the results!”

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COVER STOR Y

ArmMotus M2

MindMaze As well as being the first UK Fourier Intelligence RehabHub, STEPS is also now one of only two UK facilities offering clients access to the revolutionary MindMaze virtual reality rehabilitation technology.

Developed in Switzerland, this trailblazing VR technology helps clients who have sustained a traumatic brain injury.

“We’ve been carefully exploring what VR technology is out there, and the portfolio of MindMaze equipment is truly impressive” explains Toria. “It includes the MindMotion GO, a first-of-its-kind mobile neurorehabilitation therapy system that comes with a large variety of gamified engaging activities covering motor and task functions.

Thanks to the motivating effects of the 3D virtual environment, early results suggest an increased client engagement and adherence to therapy.”

The MindPod Dolphin, a highly engaging animated gaming experience which promotes the recovery

of motor skills and cognitive function. “The dolphin has been designed by Pixar animators no less!” says Toria. “It comes with an anti-gravity vest that de-weights the arm and trains fine-motor control of the upper-limb by encouraging continuous exploration of its immersive oceanic environment.”

STEPS has just got even better!

“We’re excited to be able to offer clients access to such an array of leading-edge technology. Added to that, we’re also now an assessment centre for the latest in exoskeleton technology,” says Jules. “What’s special and unique is that this is all delivered in our purpose-built residential setting, supported by our specialist team of clinicians who are experts in their field. We’re delighted that by giving clients access to this incredible technology, we will be maximise the opportunity for them to reach their full potential.”

NEW for 2021!

S T E P S is the o nl y residen tial faci li ty in the UK that g ives clients acce s s to new pio neer ing robotic and V R rehab il itatio n technology Jules Leahy, Director, STEPS Rehabilitation

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We're excited to be home to: • the first "Fourier RehabHub" in the UK with a suite of upper and lower limb robotics.

• a ground-breaking VR suite which includes the "MindPod" and "MindMotion Go" from MindMaze.

• an assessment centre for the ReWalk, ReStore and ExoAtlet II exoskeletons.

• STEPS training school - providing individual training packages to train care teams in preparation for client discharge.

C OVE R S TO RY

MindMotion GO

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TECH N OLOGY

App suite to improve cognitive skills sees strong growth A suite of apps to support people with brain injuries to develop their cognitive skills has seen a surge in demand globally during the COVID-19 pandemic.

Brain Education Strategies Technology (BEST) developed the first of its five apps eight years ago, with a new app or major update every year since.

The non-profit venture has created apps to answer the exact needs of people with brain injuries, to help them challenge their cognitive issues and take back control of their lives. Its use for other conditions, including MS, anxiety and PTSD, is also increasing.

From its base in the US, sales have come from as far afield as Australia, New Zealand and the UK. BEST has been developed by Michelle Wild, who has taught on the United States’ only college brain injury programme for the past 35 years, and is supported by a team of volunteers who have been part of her course and themselves have cognitive problems.

And with a global growth in sales of its BEST suite over the past year, as more people look to support

O ur BES T suite ha s b een d e si g ne d f o r p eople with br ai n i nju r y, i t’s hel pi ng t heir exact nee d s a nd ha s b een created with them i n m i nd . I t’s g re a t to see so ma ny peo pl e a cro ss the world a re using i t a nd a re ho pef u l l y s eeing the b ene f i ts f o r the m se l ves.

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themselves in lockdown and isolation, an Android version of the app is now in development to help reach even further around the world.

An in a further upgrade, a dashboard is also being planned to enable professionals and family members alike to see the individual’s progress.

Longer-term, enhanced online training and cognition classes are planned.

“Our sales numbers have gone up a lot during COVID and I think once we have our Android version, that growth will continue,” says Michelle.

“Our BEST suite has been designed for people with brain injury, it’s helping their exact needs and has been created with them in mind. It’s great to see so many people across the world are using it and are hopefully seeing the benefits for themselves.”

The five apps - PaceMyDay, ReachMyGoals, StrategiseMyLife, CompleteMyToDos and CueMyList - combine to offer a range of support mechanisms, including initiation, time management and confidence, and helps to guide people through their days.

“One of the interesting things about the BEST suite is that it can be introduced within a medical model, but then the individual can take it with them on an ongoing basis,” says Michelle.

“For some people, they use it all the time, for others it ebbs and flows depending on their situation, but it’s there whenever you need it and however often.

Some people feel OK, but then revert back to it, and that’s fine.

T E C HNO LO GY

We a re tr yi ng to e nco u r a g e s e l f re g u l a ted co g ni ti ve sk i l ls and s up p o r t the d eve lo pme nt o f tho s e s k i l l s , and ou r f i ve a pps ea ch have an i ndi vi dual rol e to pl ay i n a chi ev i ng t hat .

“We’ve worked with a few veterans in coping with PTSD - while the emotional side of that is addressed, the cognitive impact can often be overlooked, and our app suite can be important in helping them.

“We are trying to encourage self-regulated cognitive skills and support the development of those skills, and our five apps each have an individual role to play in achieving that.”

While internationally successful within the neuro

community, BEST is punching above its weight when it comes to impact.

“It’s been an interesting journey for us as a very small non-profit,” says Michelle.

“I’m the founder and all of the volunteers are prior students of mine, who are so invested in this project they want to support it. That is one of the things I’m most proud of, it’s an amazing thing.

“We get a huge benefit as with many of our volunteers, prior to their brain injury, they may have worked in marketing or sales or a variety of digital professions, and they’re now bringing that to help BEST. “We’re helping them get back into the working environment and enabling them to test out and develop their skills, and hopefully they can get back into work further down the line.”

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INSIGH T

Achieving rehabilitation through vocational work For people living with an acquired brain injury, rehabilitation is at its most effective when they are engaged in an activity they enjoy, which motivates them and gives rise to a determination to succeed.

These interests can often be found and developed through vocational activities, which provide the stimulation a person with an ABI needs, while also delivering additional physical and social benefits which provides a transdisciplinary approach to under pin wider therapeutic requirements.

TRU Rehabilitation has a proven track record and vast experience in supporting people to achieve significant benefits through the use of vocational work, both in terms of achieving rehabilitation milestones and personal goals.

This bespoke facility offer an array of vocational courses, which are created and tailored with a person-centred need at their forefront of the individual.

Onc e s o me one i s eng a g ed i n s omet hing t hey e nj oy, reha b b ecomes a lot easier.

Ma n y o f o u r s er v i ce us ers h ave blo sso med t hro u g h the i r voca t i ona l w ork .

Service users are enabled to gain experience of and develop skills in various work settings, develop valuable life skills, and also increase the possibility of gaining meaningful employment on completion of their rehabilitation programme.

“We’ve had great success with our vocational courses and some great outcomes for the individuals involved,” says Steven Miller-Renshall,

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vocational lead at TRU Rehabilitation.

“Work placements help provide structure to a person’s rehabilitation and enables them to work in a real working environment. Work ethic, respect and confidence, as well as social interaction before COVID anyway, but hopefully again soon are all big positives we can achieve through vocational programmes.

“In everything we do, we’re working towards wider therapy goals, and helping service users to use and develop skills from their other sessions.

“Once someone is engaged in something they enjoy, rehab becomes a lot easier. Many of our service users have blossomed through their vocational work.”

With such a wide selection of courses available to service users from five of the company’s registered locations in and around TRU Rehabilitation’s head office, Margaret House Haydock, the company is able to provide something to engage everyone.

Placements and work areas range from catering to visual arts; horticulture to carpentry and design; drama and dance to administration, purpose built IT and mixed media suites, a radio station and even an A Team!

Traditionally, sessions are run in two half-day segments with service users from across the residential units and community interacting with each other However, due to the COVID-19 pandemic, arrangements were revised to ensure residents from each unit remain within their own bubble.

INS IG HT

“When a service user is admitted, there is an assessment period and we ask them to trial all of the placements and see what interests them the most,” says Steven.

“There’s no point in us saying they have to do carpentry and design if it’s of no interest to them, as they will not make any gains.

“Thankfully, there are so many opportunities to learn and to get involved in something they enjoy.

“Our sessions have mainly been able to continue in person during the pandemic, with groups from only one unit at a time, and it has worked really well.

The sessions have been extended, from 10am to 3pm, but with additional breaks to ensure service users don’t get fatigued, but the engagement has been very good.

“We had to develop our two dance and drama sessions onto Zoom as there are 30 people taking part from across the residential units and whilst we

can’t do any dance work, we do a lot of script work. We’re preparing for our next show, Sister Act, and every one of those taking part has learned their lines. It’s been absolutely amazing.

“While the progress of individual service users has been unaffected, the biggest thing we have recognised is the social interaction, and we can see the effects of that. There are some friendships and great interaction in the groups and that has been reduced a lot over the past year. Some of our service users are more vulnerable, and the social opportunities can help them in so many ways.

“We’ll look to bring the group interaction back as soon as we can, however the actual work completed in the virtual sessions has improved if anything.”

And with the engagement comes the results, some of which are hugely rewarding for the individual service user, as well as for Steven and the team.

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INSIGH T

“When a service user finds the placement that interests them, we’ve had some great successes and some really big achievements. Some of the work that has been done during the pandemic has been outstanding,” says Steven.

“In carpentry and design, one of our clients made a rocking chair, which was very impressive by any standards, and a huge achievement for them.

Through working on our assessment kitchen course, there are sometimes now four clients a day wanting to prepare their own meals.

“Pre-COVID one of the stories that really stands out was when we were putting on The Wizard of Oz in dance and drama, and there was one service user who used a metal walking frame. We gave him the role of Tin Man, which we thought would tie in with using his frame.

“Even though he used the appliance daily, he said he didn’t want to use it on stage in the show. By determination and engagement in his physiotherapy regime, something he had previously avoided, he was able to achieve his goal and didn’t use his mobility aid for the performance.

“That guy showed such great determination and it shows what can be achieved.”

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In addition to the personal achievements, the courses are designed to maximise outcomes for service users, which is achieved by the multidisciplinary team of therapists from TRU-Rehab working closely with vocational coaches.

“There are links back to other rehabilitation benefits throughout everything we do and we continually link in with the multi-disciplinary therapy team,” says Steven.

“With our radio station, there can be a lot of speech and language work involved, as some of our service users do struggle, but this really helps to underpin the work done in their therapy. Similarly in drama, it can help with delivering lines and breathing techniques, we do a lot of games using these skills to warm up before the sessions, which again links back to the therapy provision.

“In carpentry and design, the physio work is really important in linking with attendees using different tools, whether that’s screwing in screws and hammering in nails, or using the sander. It’s also important in getting people warmed up for the sessions. These are quite physical tasks, and if, for example, someone struggles with their left hand, we’ll encourage them to do some movement with it - if they’re enjoying what they’re doing and are engaged in that, then we can see some progress.”

The experience of every service user is different due to their unique circumstances and needs, says Steven, but the commitment of the team to achieving the very best they can and optimise potential is the same for everyone.

“Some service users are with us for 12 weeks, others for 25 years, but it’s all about the transition - where they started, having that end goal to work towards and developing further goals” he says.

“The progress we see in our vocational courses is often really strong and we see the service user making big steps towards what they want to achieve, and it’s a real privilege for us to support them in that.”

For more information about the vocational services provided by TRU Rehabilitation, visit www.trurehab.com

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CH ARITY

Investing in the future of children’s brain injury support A charity which supports children with brain injuries and their families is investing in the future of its operation by introducing new facilities and services, alongside expanding its community offering into new areas of the country.

The Children’s Trust has revealed plans to create a state-of-the-art centre of excellence on its site in Tadworth, Surrey, replacing its current school, which will help support the education, health, care and therapy needs of each young person who needs its services.

As part of its five-year strategy, the charity is also aiming to introduce five new services by 2024, the first of which will be its use of robotics and digital transformation.

Additionally, The Children’s Trust will expand its brain injury community services beyond its current five areas - Tadworth, St George’s in Tooting, Sheffield, Leeds and Nottingham - to add three more locations across the country.

It is also looking to create a national school information service, to support schools in their knowledge of, and ability to support children with, brain injury.

The expansion comes as the charity continues to commit to investing in its ability to support children and young people with brain injuries, despite the ongoing economic turbulence and significant drop in fundraising.

Chief executive Dalton Leong revealed that while a decrease in fundraising of up to £1.3 million was feared for the financial year, the reality will be around half of that, but nevertheless will leave the charity at least £650,000 down against its annual target to sustain its services.

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And with new expenses including £165,000 on PPE in eleven months, the charity remains in need of financial support to help it continue with its plans.

“We know how difficult it is out there and I believe the charity sector has a huge part to play in society recovering from this pandemic,” he tells NR Times.

“If anything, my view on this has become amplified as time has progressed, with the work of ourselves and charities like ours helping to take immense pressure off the NHS frontline and make beds available at times of great need.

“We are all in this global pandemic together - charity, NHS, healthcare - and we all have a vital role to play.

And we see our role in that as remaining positive and getting our strategy back on track and looking to the future and how we can do even more to support those who need it.”

The Children’s Trust’s five-year strategy, launched just prior to the onset of the pandemic in the UK last year, pioneered its vision for the future of its services.

While much in the world has changed since then, Dalton is keen to keep to the plan as much as possible.

“It was all a bit uncertain at first, but eleven months on we are proactively planning for the next four years,” he says.

“We’ve been doing a lot of things in the background the day to day priority has been keeping our children safe from COVID, but behind the scenes we’ve been looking at getting back on track for the future.

C HA RIT Y

“But while we have these ambitions, and I’m confident we will achieve them, we will go at the pace which is right for our staff, volunteers and our young people. We need to make sure our people are with us.

“The effect the pandemic has had on them and their mental health is something we are very aware of, and looking after them will be the priority.”

Alongside its robotics and digitalisation plans are four other areas of development, which are still in the ‘ideas’ stage, with staff having the opportunity to pitch ideas to the charity’s Innovation Programme Board, chaired by Dalton.

“We have a number of ideas, but there are quite a few stages before they get to business plan stage.

Robotics has gone to business plan, but we’re looking at a wider area than that going forward,” says Dalton.

“Digitalisation doesn’t stop at robotics and that has been very important during the pandemic.

We’ve been doing needs assessments virtually, so

speaking to doctors, nurses and families wherever they are in the country.

“Imagine doing that in a post-COVID world. It will save so much time and will make sure we can react even more quickly.”

Going forward, The Children’s Trust has much to be positive about with such future plans and ambition, although Dalton maintains some caution.

“We are trying to be positive but also realistic,” he says.

“We have lost a significant amount of fundraising, and have had to make a small number of redundancies in our fundraising team, which has been very difficult, but we still have to offer our services to those who depend on us.

“There will be challenges going forward undoubtedly, but we remain absolutely committed to what we do. We have a fantastic team here who I am very proud of, they are a brilliant bunch, and we’re all working so hard to do the best for our children, young people and their families.”

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CASE MANAGEMENT

From BABICM to IRCM As chair of BABICM, Angela Kerr, prepares to step down after five years in post, she reflects on her achievements in the role - and how she is helping to shape the future through her new role with IRCM

After five years at the helm of the UK’s professional body for brain injury and complex case management, Angela Kerr certainly has a lot to reflect on.

During her tenure as chair of BABICM, the organisation has seen significant structural change, including rearrangements and introduction of new sub-groups being established, to help bring together specific talent and interest and make the decision process more efficient.

BABICM has also proved to be an invaluable resource to members during the COVID-19 pandemic, offering support and guidance during a hugely turbulent time for case management and the neuro sector, during which significant revision to traditional practice was needed.

Membership has also grown from over 500 to more than 900 members, as BABICM continues to build its standing and reputation

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as a central resource for case managers nationally working in brain and complex injury work.

Now, as Angela prepares to step down from her role at the BABICM AGM in June, handing over the chair to Vicki Gilman, she has already committed to the next challenge becoming chair of the newly-created Institute of Registered Case Managers (IRCM), hailed as the future of case management.

“We’ve done a lot in the past five years and I now think BABICM is an organisation set for the world ahead,” reflects Angela.

“I’m proud of what we’ve done, it’s been very much a team effort and I suppose you could say I’ve coordinated and directed the talent and skills within the group to make things happen - but good things don’t come without a lot of hard work.

“When I took over, I had a few objectives. I wanted to sort out the database and website, refine the structures and I wanted to link with other like-minded people and organisations to work together more collaboratively.

“In the past five years, that has been done. It is with great pleasure that I can say we have achieved everything I had on my list when I first took over.”

“As part of the restructuring, we appointed an operations manager to take things forward, and we’re working with bodies like UKABIF and the Court of Protection and many others who link in with what we’re doing.

“I’m delighted with the growth in membership, and we’ve really increased our delivery of training and events, we have a

phenomenal programme which will help equip case managers for the future ahead.

“I also wanted to produce a book about the history of BABICM, in this our 25th year, to show how far we’ve come. I signed that off in January, so that has also become reality.

“So I’m in the nice position of feeling I’ve achieved all the things I wanted to achieve.

I have really enjoyed my time as chair, it’s the right time to hand over to someone who can take BABICM to that next level.”

Having presided over BABICM during the COVID-19 pandemic and the huge change that necessitated from case management, Angela is proud of the organisation’s response.

“It was very important we gave people direction and guidance when they needed it, and we did that. I’m really proud of how we worked alongside the other membership bodies during that time, all of us as chairs realised the importance of doing that,” says Angela.

“It’s been an incredibly challenging time, and the priority has been keeping everyone concerned safe, clients and members alike, but we’ve always supported our members in doing what is right.

“Every situation is different, some case managers are registered with the CQC and were able to access resources those that weren’t couldn’t , so there was a lot to respond to and often some firefighting to be done.

“But throughout, we’ve been a resource for people, we’ve banded together and been one team.

“We continue to collate and share information with the membership to try and get it all in one place, such as the guidance around the vaccination programme and where to go.

“Testing is being done every week now and the vaccination programme is well underway, they’ve both been game

CA S E M ANAG E M E NT

changers really, so we’ve come a long way - but there will still be challenges for our members. We’ll take every day as it comes but BABICM is always here to support people.”

Through the structural change within BABICM, Angela – former owner of AKA Case Management - was able to use her characteristic love of creativity, good organisation and order to maximum effect.

“I love running projects and shaping things, refining them to make things happen - I loved doing puzzles as a child and I think solving things is something that has never left me,” she says.

“When I came into the role of BABICM chair, I did what I’d do in any situation, I evaluated what we had, looked at what was needed as a priority and identified a plan of how we could get there “For me, the growth of any organisation requires a lot of wheels to turn and it needs people to work together to achieve that.

“Through refinements of our sub groups and introduction of the operations person, this has played a big role, and takes a lot of specific actions away from the general meetings. The subgroup members are brilliant and work really hard all of them

also members of BABICM and work within the industry.

“I think that this has enabled BABICM to take the big steps forward and shapes the organisation for the future. It’s also something we are doing with IRCM.” The development of the IRCM over several years brings together BABICM, CMSUK and the VRA, and Angela’s integral role in its creation will continue with her appointment as chair of the newly-established body.

IRCM is currently working towards accreditation from the Professional Standards Authority (PSA), which, once secured, will help to shape the future of the whole profession and the way case managers operate.

“It’s a really exciting time and is certainly keeping me busy, as there is a lot of work to do,” says Angela.

“The initial joint guidance we created is being updated to meet PSA criteria, it’s very much a developing situation, as we’re working

towards PSA accreditation, which is a very stringent process. But we see the IRCM as being the future, so it’s vital we do this for case management as a profession.

“We know there are people setting up as case managers and working with clients, who sometimes may not have the high level of professional competence and standards we would like to see, but at the minute there is little we can do about that.

“By creating the IRCM, accredited by the PSA, and registering case managers, we are bringing in a way of checking competence and ability to practice as a case manager which is what the industry wants to see.

“This will be hugely valuable for case management and for increased levels of confidence and trust in what we do, and I’m looking forward to leading the development of IRCM. “Things will certainly not be any less busy or challenging than they have been, but I prefer it that way.”

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INTERVIE W

Build your

A

-TEAM After Craig Pankhurst had a stroke, he saw the need to promote a greater positive outlook amongst survivors. Here, the successful former athlete and businessman discusses his new venture - A Stroke of Luck, a charity dedicated to post-stroke exercise-based recovery - and why survivors need their very own A-Teams

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INT E RVIE W

W

th a background as an elite international swimmer and successful business owner, it’s little surprise that Craig Pankhurst is pushing forward his latest venture with the drive and determination which have been the staples of his professional life so far.

But his latest venture is one with a difference - far from the high-pressured worlds of toplevel sport and corporate demands, Craig is now creating significant momentum around a charity which seeks to support people in rebuilding their lives after a stroke.

A Stroke Of Luck - a name chosen to reflect the positivity with which Craig lives his life, and which punctuates the work of the charity - offers a range of exercise-based resources, direction and advice to people who have experienced stroke, empowering them to move on with their lives.

And as a fellow stroke survivor, Craig - who experienced his stroke in April 2018 - knows only too well how badly that is needed.

“I’m lucky that I have a positive outlook on life, and for me surviving a stroke was the biggest hurdle I had overcome, there was an element of luck in that,” he says.

“But as I looked at what was out there for survivors like myself and joined a number of online groups and communities, the overriding emotion was one of negativity, resignation, a victim mentality. That made me really sad.

“I thought that if I have been blessed with this positive mindset, then I can help other people get that too and show them there can be a positive future post-stroke - and that’s where A Stroke of Luck came from.

“Now, when people say ‘I’ve had a stroke, what’s next?’ I can say ‘We’re next’.”

Through an array of engaging content and innovative initiatives - from online exercise videos to Friday Live Q&A sessions with guests who have experience of stroke,

either professionally or personally A Stroke of Luck is supporting stroke survivors across the UK to move forward with a new-found confidence in themselves and their capability.

In another unique and inventive approach, survivors are also encouraged to build their ‘A Teams’ - the name inspired by the 1980s classic TV show - which brings together people whose different strengths and attributes can combine to give the support they need.

“Sport is my thing and I’m convinced people have a more positive and successful journey with the right people around them - and that’s the same in a survivor’s recovery,” says Craig.

“The survivor, as the captain of their A Team, has to play to the strengths of the team - whether that’s family, NHS, therapists, charities, whoever it is that surrounds that survivor, they need to make an assessment on when and how to bring the team members in.

“You don’t want to go to someone for an arm around the shoulder who you know is more of a practical person, or else they’ll end up frustrated at not being able to give what you need, and you’ll end up disappointed.

“If you think hard about who is around you

and pick a team which has the attributes you can call upon, which you use at the right time for you, then like in sport, you can achieve much greater success.”

As a theme which runs throughout the charity’s approach, and even its branding, A Stroke of Luck makes use of a novel ‘traffic light’ principle, which enables survivors to articulate feelings or levels of ability, which may be constant, or else vary throughout each day.

“My daughters were only eight and 12 when I had my stroke and one of the main effects for me was the fatigue,” says Craig.

“Trying to explain neurofatigue was very difficult, so we used green, amber and red to help.

“When daddy is in the green zone, he can walk, talk and function pretty much as before.

I’d start to fatigue throughout the day, so might then go into amber. But if I was in the red zone, and we were sitting in the living room chatting, cognitively I’d understand everything, but trying to verbalise that was impossible.

“So, by using the colour coding, that helped us all to understand the level I was capable of functioning at.

“It was something I used in business a lot you’d have your green clients who you were

The sur vi vor, as the captai n of thei r A Team, ha s to pl ay to the streng ths of the team whe t her that’s fami l y, NHS, therapi sts, chariti es , whoever i t i s that surrounds that sur vi vor, t hey ne ed to m ake an assessment on w hen and ho w to br ing the team memb ers i n.

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INTERVIE W

certain of retaining their business, through to the red ones who you’d need to wrap your arms around - but it translated very well into our situation.”

During the pandemic, the exercise sessions offered by the charity really came to prominence among the stroke community, with A Stroke of Luck working alongside The Stroke Association to create a 12-week programme tailored by Neuro Physiotherapists, and again working to a traffic light principle.

For Craig, promoting the concept of exercise is hugely important, with his own experience being a case in point.

“When I had my stroke, I’d gone from being an elite athlete in my early to mid 20s, training every day and having less than six per cent body fat, to the ultimate sedentary male aged 39. I’d neglected my physical and mental health,” he says.

“While I was as relentless in business as I was in the swimming pool, the lifestyle I was leading, working ridiculous hours, couldn’t continue.

“My stroke was the best thing that happened to me, and although that might sound twee, it gave me the kick up the arse I needed.

“After my stroke, I realised the huge importance of exercise, not only for physical and mental health, but also for a positive mindset and outlook on life.

“We had a fantastic response to the exercise videos we created, which focused on a different body area on each of the 12 weeks, and again were accessible for everyone through the red, amber and green, which made them as available for those people who have limited movement as those who can exercise independently.

“We’re now seeking funding to build the next move of this content - there is an ongoing need and desire among stroke survivors for a resource like this, so the ambition is to do more.”

And alongside plans for more exercise videos - which, to date, have been viewed well over 20,000 times - Craig is also looking to develop the A Stroke of Luck website into a platform to connect survivors with the right therapists for them.

“I’d probably liken it to a dating site in some

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ways, on one side you have your survivors, then on the other the experts - it could be speech and language therapy, neurophysio, any service provider - and our platform can link the two,” says Craig.

“We understand that for many people in accessing these types of services, finance may be a barrier, so we are creating a system where we can give them digital credits to pay the therapists - which are based on means tests and a needs analysis - so if people don’t have enough cash, we’ll pay for it for them.

“Plans for this were well underway, but then the pandemic hit - but it’s something we will

certainly pick back up.

“It’s so important that stroke survivors can access these services and we can support them not just to find the right provider for them, but also to finance it, if that’s what they need.”

To help raise funds for this initiative, and to sustain the wider work of the charity, A Stroke of Luck has launched its 99p A Month campaign. This campaign and the subsequent donations will be used to fund the development of more stroke-specific content which will support survivors in their life after stroke.

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TECH N OLOGY

Helping stroke survivors translate VR into real life “Sat on elephant. Swam on turtle.

Dancing in Tardis.”

While this may sound like

something from a particularly crazy dream, for stroke survivors, this is a reality - or rather virtual reality - which is delivering measurable benefits to their recovery.

Through accessing EVA Park, the world’s first multi-user online world, people with aphasia across the globe are being given unique opportunities to re-learn and practice their speech, while also developing social connections and confidence.

So while social interactions and venturing out to the shops may seem a daunting prospect in everyday life, in EVA Park, users can enjoy a carefree trip to the hairdresser, bar or disco, or even go dancing in the Tardis, should they wish.

And by being enabled to do so in the safety of a virtual environment, evidence is showing that this progress with speech is, for many users, being replicated in the real world.

“That’s the holy grail, for people to practice the contexts and develop their skills and then introduce them into real life,” says Professor Jane Marshall, who has led the research from the beginning of the project in 2012.

“So if you want to go to a cafe, you can practice in EVA Park and then translate that into a real life environment.”

And the statistics are showing that to be the case, with studies revealing many people with aphasia see

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an improvement in functional communication after using EVA Park, which has been pioneered by City, University of London.

Through the creation of avatars, which then live out whatever adventures they wish in EVA Park, interacting with fellow avatars along the way, improvements are being seen in areas of speech including story telling skills and word retrieval.

“We’ve had a very positive response but I think a big part of it is because it’s a huge laugh, it’s very sunny and joyful, as well as being slightly bonkers,” says Professor Marshall, whose background is in speech and language therapy.

“While it’s a simulation of a real world environment, you can also get the opportunity to do crazy things, such as our participant who sat on the elephant, swam on the turtle and danced in the Tardis.

“Your avatar can be whoever you want to be. You can go wild. We have some rather matronly ladies in their 60s whose avatars have mohican haircuts, and why not?

“But I think the impact of that can be very powerful one man told us it was like being on holiday, there is

T E C HNO LO GY

the same kind of escapism through being in EVA Park from experiencing aphasia in everyday life.

“Another, who had paralysis down one side of his body after his stroke, told us that he loved how this wasn’t who he was in EVA Park and his avatar could walk, fly and roller skate.”

The development of EVA Park came from the recognition that an online-based activity may bring people together in ways that would not always happen in real life - an approach typified by the restrictions caused by the COVID-19 pandemic.

“If you’re going to groups and have to travel some distance, that can be costly, and it can sometimes be difficult for therapists to get to patients if people live in remote areas of the world,” says Professor Marshall.

“In Australia, for example, we have people using EVA Park who live very remotely, so probably wouldn’t travel to use it, but because they can do it at home on their screen - it’s not an immersive experience, so they don’t even need a headset - it’s very accessible.

“Through operating in a virtual world, there are no restrictions, so it’s also a world away from the

pandemic. And while many people have turned to technology over the past year, we have always recognised its benefits in therapy and that is why we created EVA Park.”

Since the development of EVA Park in 2012, the use of technology in therapy has become more widely recognised and used, which , says Professor Marshall, will continue to deliver benefits.

“I think technology in its widest sense has a huge contribution to make for people who have had a stroke,” she says.

“There are many mainstream technologies in use now, such as word prediction technology, which can help enormously. Therapists are using apps and technology much more than ever before, and that’s an important strand.

“And there are great benefits in delivering therapy sessions remotely through using Zoom, Skype or Teams, which are really being seen at the moment.

So technology has a huge role to play.

“I think EVA Park occupies a place in that spectrum, but probably at the smaller end of the scale, and we inject a bit of fun in there too.”

While the platform has users from as far afield as the United States, Australia and the Bahamas and has been hailed for the quality of its creation and outcomes, Professor Marshall says the goal is improving the lives of its users rather than global expansion.

“We are international, but we are small. We’re university researchers rather than Apple and just don’t have the infrastructure to make the software available to a huge global user community,” she says.

“However, we are very happy with what we are doing and the groups we are working with, and our ambitions are in delivering improvements for them with their aphasia. If we are doing that, then we are very happy.”

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TH ERAPY

Chroma continues partnership with Voyage Care Arts therapies provider Chroma is continuing its successful Neurologic Music Therapy (NMT) project at Voyage Care homes for the third consecutive year.

Voyage Care is a provider with over 30 years’ experience of specialist care and support, which works with over 3,500 people with learning disabilities, autism, brain injuries and other complex needs across the UK. The business have recently developed a new 24-bed flagship rehab service in Ardwick, Manchester, where it is looking to introduce an art therapist soon, and is also progressing with new services in Scotland, Ellesmere Port and South Gloucestershire.

Their 18 rehabilitation services work with multi-disciplinary teams to rehabilitate and provide on-going care and support for people with brain injuries and complex clinical needs.

The collaborative process between these teams at Voyage Care encourages, educates and supports people to take control of their lives after a brain injury and regain their independence.

Evie Mason, a Neurologic Music Therapist for Chroma, has been delivering one-to-one NMT sessions to up to five

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residents at both the Tewkesbury and Bristol Voyage Care rehabilitation homes since 2018. She utilises NMT techniques to help these residents improve their speech and movement.

Evie says: “The most marked impact I have seen over the past two years has been in the speech work. I work intensively with haemorrhagic stroke and traumatic brain injury victims, and NMT has significantly helped these residents develop and re-learn speech.

“The musical properties of melody and rhythm immediately help the brain find new neural pathways to bypass the damaged areas of the brain. It’s really exciting to witness!

“I also use Rhythmic Auditory Stimulation (RAS) to guide movements and balance. When a client is neurologically linked into a beat and tempo, it can really help with walking practice, so after assessing a client's speed of walking, we carefully select a song for them to walk to, using RAS as a way to help them with their motor-planning and execution,

T HE RAPY

O u r aim , w he n d e c i d i ng to wo rk w i th Chrom a tw o ye ars ag o , wa s , a nd re m a i ns , to fu r t her s u p p or t ou r res i d e nts’ indepe nd e nc e , b u i l d c onf i d ence and imp rove the ou tc ome s f or t ho s e li v i ng w i th b ra i n i nju ri es.

The par tne rs hi p w ork s – for u s , but mos t i m p or ta ntl y, f or o ur re s i d e nts .

thus improving their balance and gait.”

Louise Houghton, ABI placements manager at Voyage Care, says: “Both Chroma and ourselves believe in personcentred rehabilitation.

“Our aim, when deciding to work with Chroma two years ago, was, and remains, to further support our residents’ independence, build confidence and improve the outcomes for those living with brain injuries. The partnership works – for us, but most importantly, for our residents.”

Daniel Thomas, managing director at Chroma, adds: “The future here is exciting. We continue to deliver specialised NMT techniques to residents on a one-to-one basis with the outlook of undertaking new group work sessions, which we believe will help further promote rehab engagement, whilst simultaneously providing residents with a support network, developing their social awareness.”

For more information, please visit www.wearechroma.com

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TECH N OLOGY

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T E C HNO LO GY

Redefining rehab possibilities through gaming

From a series of chance encounters came the creation of a business which is helping to revolutionise therapy and rehabilitation on a global scale through the use of gaming.

With the creation of LusioMATE, the world’s first wearable therapy controller and game ecosystem, Lusio Rehab is helping to redraw the boundaries and rehab potential for people living with neurological conditions and other disabilities around the world.

Since its launch in 2019, the device has expanded far beyond its origins in Australia to be in use in the UK, across Europe, the United States and South America.

Already widely adopted by neuro professionals to create bespoke exercise programmes for both ‘inclinic’ and ‘at-home’ settings - with groundbreaking technology providing real-time data to monitor clients’ engagement remotely - during the pandemic, the use of LusioMATE has “skyrocketed”, and manufacturing capacity has had to be scaled up to meet this growing demand.

C l ie nt s have g one f a r beyond the ir prec o nc e i ve d i d e a s of w ha t they a re c a pabl e o f … w e t a l k a bo u t ‘re hab w it ho u t bou nda r i e s ’ a nd I t hink that’s e x a c t l y w ha t it i s

Another area where demand is high is for fresh gaming content. With a current suite of 28 games developed in house, Lusio Rehab’s commitment to constantly expand on the client experience, whether through new games or new feature development, is strong and something they take very seriously.

“I think the most rewarding thing for us is when we hear of the achievements that are made through using LusioMATE, when clients have gone far beyond their preconceived ideas of what they are capable of,” says Justin Keenan, CEO of Lusio Rehab.

“By being completely engrossed in their exercise via the games we have created, people are way surpassing their pre-supposed limitations. It genuinely gives me goosebumps to know we’re enabling such achievements. We talk about ‘rehab without boundaries’ and I think that’s exactly what it is.

“But while we’re delivering incredible results, this isn’t a finished product and it probably won’t ever be.

Since the earliest days, we’ve been led by clients and professionals, that’s how our story started, and that will always be the case. We’re building the car as we’re driving it.”

The business has been blessed by many interventions - “we’ve had a lot of sliding door moments and serendipity”, says Justin - which have enabled it to get to where it is today.

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TECH N OLOGY

T he need to d o a t- ho me ther a py is hug e l y i mp or tant, but o f te n p e o pl e a re n’t a s engaged as they c o u l d b e . B u t thro ug h g ami f i cati on, w e’ ve he l p e d to a dd re ss t ha t

Back in 2015, Armin Songhori, now head of tech at Lusio Rehab, was working in his native Iran. A seasoned entrepreneur and robotics engineer, he was approached by a doctor friend, who was treating Arshia, a five-year-old boy with Cerebral Palsy.

“He was struggling to find a way to engage Arshia in at-home therapy, he wasn’t motivated to do it at all,” says Justin.

“Armin got thinking, and realised a remotecontrolled car may be a good place to start with a young boy. He created a bendable sensor for Arshia’s wrist, which enabled him to control the car whilst doing his therapy, and Arshia absolutely fell in love with it.

“That was the eureka moment for Armin in how gamification could help with physical therapy. That was the start of the rollercoaster ride into the world we now find ourselves in.”

Armin then moved to Australia, where Justin ran a recruitment business. Justin needed help in shortlisting candidates with expertise in C++ code, and was introduced to Armin by fellow recruitment entrepreneur Chris McGowan, who was also to become part of the Lusio Rehab story.

“While we were working together, Armin told me about his invention for Arshia, which was now onto its fourth prototype, and he asked what I thought.

It was amazing - but without any experience of how to launch this type of product and no experience in healthcare, we were just three friends on a mission to see where it took us,” says Justin.

Then came the next stroke of luck.

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“When meeting with an IoT expert in our network we learnt of the Cerebral Palsy Alliance and their Remarkable Tech accelerator programme, which championed technology to improve the lives of people living with a disability. It sounded perfect for us - but the deadline was that same day,” recalls Justin.

“Fortunately, we got the application in, completed the pitch, and were shortlisted onto the programme.

Being mentored by leaders in medtech and working closely with clinical experts, within six months we’d gone from a great idea to the foundations of a great product that could change people’s lives.”

And from there came a business which is delivering often life-changing moments. Whether for children who struggle with habilitation, or for adults who have seemingly reached their potential, or for older people in care homes, LusioMATE is helping people to realise new possibilities.

Initially rolled out through the Cerebral Palsy Alliance network across New South Wales, its ease of use and ability to engage people of all ages and abilities through gaming has been central to its worldwide growth.

“That’s the core principle - it’s inclusive - but we are constantly working on new features,” says Justin.

“We’re continually working with clients and therapists to ensure it delivers. We’re proud that any age group, of any physical capability, who require physical therapy to prevent deterioration or improve quality of life, will benefit from LusioMATE. The sensors can be tailored to the client’s specific range of motion such that it can really help anyone, regardless of their range of movement.

“At the same time, although technology is amazing, if people don’t know how to use it, or it’s not what they need, then it’s useless. We’re certainly not afraid to revise any part of its DNA and do so all the time.

“We originally launched with a prescription gaming feature where therapists could create very detailed exercise plans. However feedback from our clinical partners taught us that they didn’t have time for duplication of work, writing their own internal client reports and prescriptions to LusioMATE. But they loved the idea of creating movement goals for their clients, so we designed ‘the detail’ out and streamlined the experience.

T E C HNO LO GY

“We are always engaging with people, listening to their feedback and responding. We’re also lucky to have an exceptional team who work tirelessly on every aspect of the tech and client experience.

“We’re not a developer of assistive technology who creates a product then that’s it, we want to be on the journey with the people who use it.”

One area in which LusioMATE has always been hugely effective - and particularly so during the pandemic - is with its at-home rehab.

“When clients do their therapy at home, I don’t think it’s uncommon for a bit of ‘slacking off’ to happen, but for the first time ever, physios and OTs can get real time data to see whether that is the case or not, which allows them to triage the situation,” says Justin.

“As with Arshia in the very earliest days of Lusio, the need to do at-home therapy is hugely important, but often people aren’t as engaged as they could be. But through gamification, we’ve helped to address that.

“When the pandemic hit, telehealth came in pretty much overnight, and with LusioMATE, the therapy could move from being physically in-clinic to being at-home.

“Those therapists who already used LusioMATE

already had the clients’ bespoke plans in place, and they could be monitored remotely using that data.

And among individual users, the take-up absolutely skyrocketed for us.

“Clients soon realised that the remote limitations were endless, with the scope for taking LusioMATE on holidays, while travelling, and even when working. Essentially LusioMATE is a therapist in your pocket.”

Going forward, Justin and his team are focused on continuing the global roll-out, with LusioMATE now ahead in its strategic plans due to its huge popularity during the pandemic.

“When we first launched the product, we did worry it was too early, but like with all inventions there are the early adopters who helped it to grow, and we built from there - now, we have built really strongly during the past year and will keep going,” says Justin.

“We are bringing more clients in day by day, week by week, and are increasing our client base in both born and acquired disability and injury.

“We continue to add new features, most recently a trophy-based reward system to motivate player adherence, which also doubles up as an ‘at a glance’ monitoring tool for clinicians too.

“There is a whole range of data that we can provide to clinicians for monitoring, and we are currently looking to expand what data we can display in-app for easy reference.

“We’re also looking to create an inclusive leaderboard - one that is based on achievement of goals and not necessarily on how long or how many times you’ve played something.

“We’re constantly looking at how to make the game play a richer experience, and adapting what we do in response to client and therapist needs. The work is ongoing and we’re committed to making LusioMATE the best it can be.

“The difference we’ve made so far has been fantastic - not in terms of the market necessarily, we’re not a disruptor, but to people’s lives. To hear the stories of people who have achieved and exceeded their personal movement goals is what it’s all about.

Helping people like this is such a privilege for us all at Lusio Rehab.”

For more information about LusioMATE, visit www.lusiorehab.com

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INSIGH T

‘Do we listen to the NHS or the Government on vaccinations?’

With a poll of case managers revealing 61 per cent of them were unclear where brain injury sits in relation to the COVID-19 vaccination programme and the high risk (clinically extremely vulnerable) and moderate risk (clinically vulnerable) categories, Laura Mulholland from Calvert Reconnections says there are clear contradictions between the Government, who fund the vaccination programme, and the NHS who are delivering it With more than 1 in 3 adults in the UK now vaccinated against COVID-19 one question remains unanswered.

Where does acquired brain injury (ABI) sit in relation to the vaccination programme?

According to NHS Guidance, those who have a condition that affects the brain or nerves come under the heading of moderate risk (clinically vulnerable). Also included in this group are those with heart disease, individuals taking steroids, people with diabetes, lung, heart, kidney and liver disease. Similarly, people with a high risk of getting infections, obesity and pregnancy are incorporated.

This moderate risk group is advised that they will not receive a letter for their vaccination and need to continue to follow social distancing guidelines.

As the NHS is implementing the vaccination, should this

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guidance be listened to, or should Government advice take priority?

Contrary to NHS guidance, the Government states that chronic neurological conditions are considered as high risk and are a priority for the vaccination programme. It is stated that severe neurological disability, conditions similar to motor neurone disease (MND) and epilepsy are just a few of many neurological conditions that are clinically extremely vulnerable and therefore require a vaccination as soon as possible.

Individuals with an ABI are often diagnosed with secondary conditions. When a person is diagnosed with an ABI, the initial diagnosis takes precedence and there is the potential that secondary symptoms are lost in clinical notes, thus removing ailments from diagnosis statistics.

INS IG HT

This could make it almost impossible for clinical notes to collect the information and address the need to vaccinate patients with an ABI as a priority during the vaccination rollout programme. Following the guidance from NHS England, could we be leaving a highly vulnerable section of the population to fight an illness when they are not strong enough to do so?

According to 2018 data, there were 1.4 million people living with a brain injury in England. Symptoms or subsequent complications that can be caused by the injury include cognitive deterioration, behavioural changes which can include disinhibition, psychiatric symptoms and an alteration to their level of consciousness. These are all conditions which create a susceptibility for clients with an ABI to be vulnerable to catching and transmitting COVID-19.

Professionals who work with clients that are within this category understand the increasing concerns of individuals and families.

During a time when social isolation is the prescribed route, the behavioural, emotional, and psychological effects caused by the ABI are extremely more pronounced.

One nurse has explained that some people with ABI cannot comprehend social distancing and are therefore at a higher risk of contracting COVID-19 and transmitting it. If schizophrenia and bipolar disorders are clinically extremely vulnerable due to a lack of capacity regarding distancing, those with an ABI should be too.

If chronic respiratory disease is a diagnosis that requires a vaccination to avoid mortality then persons affected by the ‘symptom’ of an inability to breathe or swallow effectively, should also be provided for. Should these clients accept NHS Guidelines?

A Professor of Neurosurgery, Peter Hutchinson, stated to one organisation that: “I encourage all brain injury survivors and carers to get vaccinated at the earliest opportunity”.

There are clearly a multitude of contradictions between the Government, who fund the vaccination programme, and the NHS who are delivering it.

With the two main bodies unable to reach agreement and follow identical guidelines, the recommended course of action for anyone with an ABI is to seek the support of their GP in order to become prioritised for vaccination.

* Lorna Mulholland is registered manager at Calvert Reconnections, which has developed the UK’s first residential brain injury rehabilitation programme combining traditional clinical therapies with physical activity in the outdoors.

The centre is currently taking referrals in advance of its opening later this year. www.calvertreconnections.org.uk

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TH ERAPY

Community rehab provision continues to expand A community therapy centre which enables neuro patients to access the physio-led exercise which can support their recovery continues to expand in response to demand for its services.

West Berkshire Therapy Centre was opened in 2014 to bridge the gap in existing community resources, and initially opened for 20 hours a week with ten items of equipment.

Since that time, the Thatcham centre has expanded into premises twice the size of its initial home, and now has 17 items of equipment which clients can access 35 hours each week.

While the centre has been forced to close during lockdown periods, the investment in its offering has continued, with a further £17,500 being spent to upgrade equipment.

In addition to its regular clientele of around 260 people, around 200 more will be referred to the centre from the Berkshire Long COVID Integrated Service, led by Dr Deepak Ravindran, who has worked closely with the centre for several years.

As well as the anecdotal evidence from clients who attest the positive effect West Berkshire Therapy Centre has, the centre’s work has been proven to improve client mobility by an average of ten per cent, psychological outlook by 15 per cent and weight loss by three per cent.

All clients are assessed by the centre’s physio before being prescribed an individual exercise programme.

The centre prides itself on its client-centred approach

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and some of the equipment in the gym has been designed and built specifically in response to what clients said were important to them.

West Berkshire Therapy Centre was created by the West Berkshire Neurological Alliance, a group of 23 local neuro charities, which recognised the need for greater specialist provision for people living with neurological conditions in the area.

John Holt was instrumental to the creation of both the Alliance and the Centre. Having supported his wife in living with MS for over 40 years, he took the lead on ensuring greater provision and support was there for those who needed it.

“I’m not from a medical background, I’m a food technologist, and while I was chair of a trade association during my career, I was used to working with competitors and business enemies, that was just what happened for the greater good of us all,” he says.

“So I was rather shocked when I got involved with the local voluntary sector and found that wasn’t the case.

I was very proactive in all of our charities working together as I know the importance of working as one alliance.

“People who were living with neurological conditions were often having to fend for themselves when it came to community rehab, and that’s why we wanted to create the West Berkshire Therapy Centre.”

Having been established on the back of £145,000 in fundraising, five years later the demand for its services was such it had to expand into larger premises and invest in more equipment.

The centre - which is funded by voluntary contributions for sessions and through fundraising now has eight part-time staff and a core of volunteers to support clients with whatever rehabilitation issues they have.

T HE RAPY

While most clients have neurological conditions - including stroke, Parkinson’s, MS and Post-Polio Syndrome - the centre has broadened its reach to include large numbers of people with arthritis, heart and lung conditions, sight impairments as well as amputees.

“We’re completely pan-disability and will support anyone who needs us. Our clients talk to us and we listen and adapt,” says John.

“I think many clients come to us because we are a safe place for them and they’re among people who understand the challenges they face.

“It is very important that we talk about things openly.

For example, we talk about how hard it is when you can’t get to the bathroom in time and you wet yourself.

“When you face issues like that, it can be the start of a spiral downhill, you might then stop going to work or stop leaving the house, but we share these kinds of things.

“By having this interaction, it becomes a place people aren’t afraid to open up.”

With the centre having been closed for much of the past year, John and the team are ready to welcome back regular and new clients, including the many who are recovering from Long COVID. “Many of our clients won’t have exercised for several months, but we hear very often that people have waited 20 years for a centre like this, so a few months hasn’t been long in comparison,” says John.

“But we are very much looking forward to re-opening and supporting our clients in regaining any progress and fitness they may have lost. Hopefully we are on the right track now after three lockdowns and clients can come back to us regularly.

“Long COVID is a new condition for us, as it has only come into being in the past few months, but we are ready to support people with their symptoms and in them using exercise as part of their recovery.”

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OPIN ION

‘Living my life as me’

Having finally felt comfortable in his own skin after undergoing gender transition to become the man he wanted to be, Chris, aged only 25, was then confronted with a diagnosis of Multiple Sclerosis.

Here, he shares his inspirational story of overcoming challenges, being positive and living life to the full with the support of both the MS and LGBTQ+ communities

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Having transitioned to becoming a man, which was the point I finally discovered who I am, I hoped it would be the joyous start of a new chapter in my life I always imagined it would be. But while going through the process, I was diagnosed with Multiple Sclerosis (MS).

Aged only 25, this wasn’t how I had imagined my new chapter would start.

To have two such huge life-changing moments come at the same time was a huge challenge - but I’ve always been determined to live my life and enjoy every day, and that was what I resolved to do. With the support of some great people along the way, I’ll continue to think positively and get on.

Looking back on my early years, I knew something wasn’t right, but there wasn’t the awareness of being transgender that there is now. I was a girl but presumed I must be gay. That still didn’t seem to be the answer to how I felt, but I didn’t really question it. I didn’t know how to. Growing up in a small town in the Lake District, where everyone knew everyone else, it wasn’t really the kind of conversation you could have very easily.

It wasn’t until I went to university in 2008 and met a friend from the LGBTQ+ community that things started falling into place. For the first time, I could speak to people like me, there was literature which was relevant, and it felt like at last I knew where my journey was taking me. That was the lightbulb moment.

About two years later, in 2010, I began my gender transition. First was social transition, which involved living as a man, legally changing my name, using male pronouns and seeing everything from a male perspective. It was strange back at home, where I grew up, now living as male, but the acceptance was amazing.

Things had moved on from when I was a child, and thankfully have continued to do so.

Over the next few years after being seen by three separate psychologists, who assessed me all the way back through my childhood, I was then able to proceed with my physical transition through hormone treatment and surgery, I decided to go privately to get the process moving quicker.

I had reached the point where I knew this was who I am, and at last, after so many years, I was comfortable in my own skin.

O PINIO N

During my transition, really randomly, one day I was at work - I work in hospitality in an arts centre - and while walking up the stairs, my right foot kept catching on the steps. It was very strange.

But then, only shortly afterwards, I had some cappuccinos on a tray and my right hand gave way and I dropped everything. I realised I couldn’t feel my whole right side.

I went to hospital and things like a stroke and TIA were ruled out, but I didn’t know what actually was happening to me. I knew it was nothing to do with the gender transition, there were no possible side effects of this kind, but I had no idea what else could be going on.

After various hospital visits, I got the diagnosis of Clinically Isolated Syndrome, but about a year later, in 2014, that was confirmed as Multiple Sclerosis. I was only 25.

While I’m often asked whether I was devastated and if my world fell apart, to be honest, my initial reaction was that I’d dealt with a lot more than this already. My transition was more difficult mentally, physically and emotionally than an incurable neurological condition that was out of my control.

I think had I not been through the transition, then the MS diagnosis might have been more difficult. But when you’ve been through such a huge life-changing process, you learn the importance of thinking positively and living your life as you.

On my own, of course I have wobbles and wonder why this has happened to me, but I try and process it logically rather than push emotion on to it. With being transgender, I could have wallowed and got through life miserably being a person I knew I wasn’t, but I always look for the solution. For the things you can’t control, you can only manage it the best way you can.

I’m now on my fourth course of treatment for MS. I started on a lower efficacy programme, but that has been escalated as my MS is progressing a little bit faster than they initially thought it would. My main symptom is with my cognition, and I won’t leave the house without my phone with loads of reminders on it, and I have whiteboards with reminders at home too.

My NHS MS team are absolutely fantastic, and if I email them at 2am with something that is bothering me,

they’ll come back later that same morning. The support has been such a huge help from the MS Trust, Shift MS, the MS Society and Facebook groups.

I don’t actually think I could have got through the transition or coped with my MS without the great support I’ve been given. In many ways, the similarities between the MS and LGBTQ+ communities are so similar - they appreciate the support you need for such a life-changing thing and there are people who understand and want to do their best to help.

I’ve always been honest and open about everything and I think once people know, and know it’s fine to ask questions, they feel much more comfortable. I’d rather they came to me if there was anything they needed or wanted to know.

We all have questions and it’s OK to ask.

After pretty much a year of shielding, I can’t have been outside more than ten times since March last year, I think the thing I’m most looking forward to now is to getting back out and living my life. I’m going to plan to travel again with my sister and remember how much I used to enjoy doing even the simple things.

I’d say to anyone who is going through anything they’re struggling with to reach out. Whatever the issue you face, you are part of a community and there are people there to help you. Without support, I’m not sure what my life would be like now - but the fact I got through it with positivity and am now looking forward to great times ahead, is something I’d have struggled to do otherwise.

Never be afraid - you can get through it.

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Is spinal cord injury curable? Yes, it is As chief executive of Spinal Research, Harvey Sihota is helping to advance global efforts to develop treatments for paralysis through its funding of medical research. Here, Harvey tells NR Times why efforts to turn academic ideas into commercial realities must be stepped up, and how investment is crucial to that Back in 2009, when a freak accident led to Harvey Sihota being left paralysed, the outlook for spinal cord injury patients being able to walk again was less than optimistic.

“It was considered to be final, a lifelong condition.

When the consultant came to my hospital bed and told me I’d never walk again, it was very black and white,” he recalls.

“Everything seemed to be going through my head at a million miles an hour, but the overriding feeling I had was one of being a rebel, of thinking I’ll prove them wrong.

“While this was the opinion of this doctor, I knew there were other doctors in the world, researchers who could give me a different outlook.

“I’m a technologist and futurist, and while there was a real chaotic cocktail of emotions for me, as well as my friends and family, I wanted to be that rebel who would show what could be possible.”

With a background in credit risk IT in the City of London, Harvey took the skills that enabled him to thrive in such a progressive and forward-thinking area of business and applied them to the reality for him and so many others.

“Having researched where I could go and what rehab programmes I could try, I realised the best opportunities were in other countries. The US and Switzerland were well ahead when it came to rehab after spinal cord injury,” says Harvey.

“I believed strongly in the need for rehabilitation, with constant challenge of the nervous system.

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While I did contemplate moving to the US, I wanted to create something here.”

That ‘something’ was Neurokinex, the cutting-edge rehab facility inspired by neuroscience, which devises specific programmes for spinal cord injury patients to motivate their whole bodies, optimising the strength and endurance of functioning muscles, while stimulating the muscles that have been most affected by injury or neurological condition.

The award-winning business, which operates from three sites across the South of England, has been credited with giving new hope to people for whom paralysis was considered a permanent state.

“It was modelled on the best in breed of what I’d seen at home and abroad and we continue to improve and progress what we do with the best science and practice.

We’re creating a culture of innovation,” says Harvey.

Keen to continue to disrupt and change the acceptance of this ‘lifelong’ condition, and use science as a means to do that, Harvey’s role as chief executive of Spinal Research is enabling him to do that.

“Is spinal cord injury curable? Yes, it is. But the challenge now is the delivery part,” says Harvey.

But the key, he believes, is turning science into commercial opportunities.

In partnership with the Christopher and Dana Reeve Foundation, Spinal Research is hoping to create a fund - bringing in other international partners and Foundations along the way - to support university spin-outs and businesses to advance their work further.

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“Sometimes science can be seen as slow, but there are always things that can be done. You don’t need to be a scientist to have a role in accelerating processes,” he says.

“In 2009, when you Googled spinal cord injury and the answer was apparently stem cells, which seemed to be the answer for everything then, now, we understand the pathways and circuitry, we know how they react and evolve and are regenerated.

“The understanding of biology has come on so much, and academia have done a great job of driving that but where we fall down is turning that science into a product or a clinical trial.

“The spinal cord injury market is not as big or attractive to big or even mid-sized biotech businesses as in wider healthcare, and it’s taking some really courageous entrepreneurs to extract the ideas out of institutions and turn them into products.

“We need tens of millions of pounds to be injected to bridge this gap between academia and commercialisation - and sadly, we can’t do that with marathons, bake sales and Christmas cards.

“But what we are doing is designing a fund that can support these early-stage companies get to the next stage of delivery. Spinal Research and the Reeve Foundation working together, with all of the expertise and great scientists in our network, can give the best and most efficient platform to create and deliver projects.

“And if we are rewarded for that in terms of a return, then that becomes self-fulfilling.”

One venture to already receive such backing is ONWARD, which is developing two products to deliver

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life-changing outcomes for spinal cord injured people, the first of which could be commercially available by 2023.

“This is really exciting and is probably one of the first breakthroughs likely to change the way we treat spinal cord injury for decades. The potential impact is huge,” says Harvey.

“But I do think there’s an element of fatigue in the spinal cord injury community over timescales being put on these kinds of developments - that’s why people aren’t jumping for joy just yet.

“People who have lived with their injury for a long time think they’ve heard this before - but the big difference now is the advances in research and development, in how science becomes medicine. Educating the community about that is a fundamental requirement.

“I’d describe myself as a delivery person, I like to get things done. At Neurokinex, we all had to roll our sleeves up to get the results, and the same goes now.

“There’s a saying that ‘ideas are cheap’ and I think that’s true. Part of the challenge is changing hearts and minds, inspiring people and bringing them along with you.”

Through creating new networks of change-makers in the UK, then concepts can become reality, says Harvey.

“The focus for the UK is to create the infrastructure that follows from our scientific and academic base, which we currently lack. We need to be ready to deliver the clinical trials, for clinical services to be ready to deploy innovation.

“If we want to attract industry to the UK to invest in spinal cord industry business startups, one of the key parts of delivery is the clinical trial, but we don’t have the networks set up for that.

“The NHS does a really good job with funding the trials, but in the clinical trial network there’s a big gap.

Companies may choose to base overseas, run trials elsewhere, and we’ll lose the opportunity. Money that we may have raised here is being diverted abroad.

“We really need to create a network of important clinicians who want to come together and build the case for increasing the funding for clinical trial infrastructure - of the spinal cord injury centres in the UK, how many could be enhanced to run a trial?

“If the will and co-ordination come together, then we can make a compelling case to ask for the funding to raise the standard of existing centres - that’s the only way we are going to be in a position to run those clinical trials here.”

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Keeping families together during rehabilitation Through the creation of on-site apartments in Askham Community Village, families can now stay together during their loved one’s rehabilitation, ending the heartbreak of separation faced by so many. NR Times looks at how one couple’s experience is now being replicated by families from around the world “Our journey began with me sat on the side of a road crying - but now I’m leaving with my wife.”

Rachael Evans’ initial struggle to deal with her wife’s illness is something so many people can relate to - watching their loved ones battle to rebuild their lives after brain injury while feeling excluded from their care and being forced to live apart during their rehabilitation.

Rachael’s wife, Jasmin, was seriously ill after a severe brain aneurysm and two strokes left her speechless, partially blind and practically immobile. And added to the huge toll Jasmin’s illness had taken on her devoted wife, the isolation she felt made things unbearable.

But then, when Jasmin was taken to Askham

The re w a s a s much con s i d era t i on o f m y ne ed s , a s J a s mi n’s f ut ure ca rer, as t here w a s fo r J a s m i n. T he t ea m recognised t hat i t ’s a b o u t the b i g g er p i ct ure - i f t hey al so he lp the c a rer, t he res i d ent b enef it s Community Village, in Doddington, for rehabilitation, things began to change.

“By the time Jasmin was transferred to Askham, the stress from the acute care phase had taken its toll on me,” recalls Rachael.

“I arrived tired, emotional, and confused about

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what was happening. I felt left out and alone.

It was horrendous.

“I was immediately reassured by the team, however, and was welcomed to be part of Jasmin’s recovery process.”

With the creation of Askham Village Community’s new self-contained apartments, contrary to the exclusion loved ones often face, couples like Rachael and Jasmin are now able to stay together and deal with their new reality as a family, for however long the rehabilitation process takes.

Having only been added into Askham’s offering late last year, the apartments welcome patients from across the UK and even around the world, and are able to keep them together with their families and loved ones in the privacy and calm surroundings of their own ‘home from home’.

For Rachael and Jasmin, their fully-furnished, accessible apartment became home to the couple for the duration of Jasmin’s 10-week rehabilitation at Askham, with access to the community’s expansive gardens and grounds supporting Jasmin’s wellbeing and ongoing recovery further.

The temporary accommodation - likened by Rachael to a five-star hotel - also provided ample space for Jasmin, who arrived withdrawn, low on confidence and with a continuing battle to walk and talk.

“I’m amazed at the services on offer. Askham is not playing catch-up with the latest trends in care, it’s leading the way,” says Rachael.

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“During the rehabilitation, we never felt like patients either. Askham is a people’s home and we were made to feel like residents. This was evident with our own apartment. Staff could’ve knocked and just walked in, but they didn’t. It’s about respect for each other.

“There was as much consideration of my needs, as Jasmin’s future carer, as there was for Jasmin. The team recognised that it’s about the bigger picture if they also help the carer, the resident benefits.”

By having Jasmin at the centre of the rehabilitation programme – a core ethos at Askham – its holistic approach to rehab meant that Rachael was invited

to accompany her wife to sessions that included group activities.

And after being forced to be apart during Jasmin’s stay in an acute hospital setting, at Askham, the couple were able to stay - and leave - together.

“We came to Askham looking for help and are now leaving with a family,” says Rachael.

“I can only praise the staff’s respect, compassion and empathy for enabling us to leave in such a positive position.

“Thanks to the structured, holistic approach of the rehab, Jasmin responded to treatment way quicker than I could’ve ever imagined.”

Aliyyah-Begum Nasser, director at Askham, adds: “Allowing Rachael to be a part of Jasmin’s journey proved significant in her road to recovery, and we look forward to celebrating more success stories in the near future.

“As a family business ourselves, we recognise the value of family relationships in navigating through difficult times. It is important for us that rehabilitation builds family support into the picture where it is available as it can play such a powerful role.”

For more information about Askham Rehab, visit www.askhamrehab.com

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Setting new standards in dementia care After more than three years in the planning and design, meticulously mapping out every detail of the project, the new specialist dementia hub created by St Andrew’s Healthcare opened its doors in August last year.

The Lowther dementia hub brings together four wards to create a village setting with community outdoor amenities including a post office, launderette, bus shelter and village hall, providing an outside space that helps to maintain familiar routines and encourages activities and engagement for people with complex dementia, cognitive deficits and behaviours that challenge.

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The project marked a significant step forward in the care and support of people with dementia, both by St Andrew’s and on a national basis, with Lowther’s innovative and inclusive layout setting new standards in provision and showcasing how sensitive design can be a ‘silent partner’ in dementia care.

Despite the many challenges presented by opening a large-scale project during a pandemic, the huge benefits it is delivering to patients are already clear.

“We have some fantastic new things as part of Lowther, the courtyard facilities have been so important for the wellbeing of patients and staff, especially during the pandemic,” says Hannah Taylor, nurse manager on Cherry ward, which delivers Lowther’s dementia provision for female patients.

“New technologies like taps that can track and report back to the clinical team if a patient consistently forgets to turn them off, help us to monitor changes in a patient’s cognitive abilities.

“There are small things that in normal times you take for granted, but the really good WiFi has been crucial. While we didn’t know the opening was going to happen in the middle of a pandemic, the fact we’ve had that has made keeping in touch with families so much easier.

“Our patients are telling us they love it here,

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which is such a fantastic thing to hear. It’s the little touches which make the big differences to them, and we’ve made sure everything has been factored in.”

“Lowther has been designed to be absolutely what we need,” says Chloe Annan, nurse manager on Elm ward, which cares for men from mid-stage dementia through to end-of-life.

“We were involved in the planning and design of each of the wards, so we’ve had a role in this taking shape throughout. A lot of our staff have been here for a long time and it’s great that we have been involved and listened to.”

Designed with four specific care zones St Andrew’s dementia team worked in conjunction with architects to create an internal space incorporating supportive technology and design features including; circadian rhythm lighting supporting patients to be active during the day and restful at night; acoustic dampening to reduce and divert noise levels in ward environments, and memory boxes and coloured doors to support way-finding and orientation.

By creating a community, St Andrew’s has put patients, and their families and carers, at its heart, with opportunities for social interaction a key feature of Lowther’s creation. While that has not yet been possible, due to the continuing COVID-19 restrictions, plans are very much underway.

“Many families have been hugely complimentary

about what we’ve done in moving here - while they haven’t been able to see it for themselves so far, they know the work and effort that has gone into this project and are seeing the benefits it is making to their loved ones,” says Hannah.

“The idea of having this community and the facilities we have created is to do more things as a group, with all four wards coming together - that hasn’t been possible so far, and we’re very protective of each of our groups due to their vulnerability, although we have been doing things with our wards individually.

“Our four wards are based around a social hub, and once restrictions allow, we’ll have quiz nights, bingo, all kinds of events to encourage patients to come together and mix.”

Chloe continues: “Families and carers will also be able to come in and meet each other, which is very important to us as that can be of huge benefit to patients. So far, they’ve only been able to come in on a very limited basis to see the courtyard, but we see the big group events as something to look forward to. While it’s not possible now, we are planning for the months ahead.

“While we haven’t been able to open with the huge party we were hoping for when we first got involved in planning it more than three years ago, that will still happen as soon as it’s possible.”

For more information, visit stah.org/Lowther

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Helping Richie to find his voice With the #avoiceforrichie campaign capturing the hearts of the nation, NR Times meets Jennifer Benson, the speech and language therapist who made it possible for Richie Cottingham to get a voice to call his own Having had the same vocabulary package for his communication aid since school, Richie Cottingham was well overdue a change.

Being reliant on assistance with speaking from the earliest age, Richie - a 26-year-old with Cerebral Palsy - had become used to the generic ‘American’ accent he spoke with, not believing there could be an alternative.

But as part of the change in his communication package - which came through an overhaul of his wider multi-disciplinary team - Richie met Jennifer Benson, his new speech and language therapist.

Experienced in voice banking and preserving the voices of people with neurodegenerative conditions by recording them, Jennifer’s thoughts for her new client turned to whether - in contrast to the more

R ichie d id no t have t he u ni que vo i ce to m at ch hi s u ni qu e ne s s a s a p erso n.

So I sug g e s t e d t ha t w e lo ok fo r a vo ice w hic h i s mo re re pre s e nta ti ve of him as a yo u ng ma n fro m Ea st Yorkshire , a nd he love d t he i d ea .

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common technique of voice preservation - there could be the potential for voice creation.

“Richie is a proud Yorkshireman and such a character with it, he’s a fantastic bloke, and I wondered whether we could give him a voice to call his own,” says Jennifer.

“He has never had his own voice, and a voice is critical to a person’s sense of identity and heritage. In many regards, it’s as unique as a person’s fingerprints - but when Richie was around his peers who also used communication aids, they all sounded the same. Richie did not have the unique voice to match his uniqueness as a person.

“So I suggested that we look for a voice which is more representative of him as a young man from East Yorkshire, and he loved the idea.”

One email to their local BBC news later, and the sensation of #avoiceforrichie was born. Within days, Richie and Jennifer were appearing on local and national television and radio, capturing the hearts of the nation with their search for a voice donor to give Richie his own voice for the first time.

“It has been amazing, Richie has stolen people’s hearts and has had so much media attention. He is such a fantastic character and always laughs at me for getting nervous before our interviews,” says Jennifer.

“In many ways, being on the radio has been even more meaningful than being on TV - there is no reason someone with a communication aid can’t speak on radio, but it so rarely happens. Richie is breaking down barriers and showing what’s possible.”

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From their appeal, 35 men came forward volunteering to donate their voice, which Richie has now finalised to three. SpeakUnique, the voice banking partner Jennifer has worked with for several years, is now creating three blended voices from which Richie can make his final selection.

“When we started getting the videos through, it quite restored my faith in human nature, people were saying such lovely things and really recognised the importance of this to Richie,” says Jennifer.

“The importance of having a voice is perhaps something people haven’t thought about before, because if you’ve never been in the position where you don’t have the ability to speak and are locked inside your head, then you could never know. But from listening to Richie, people have been inspired to act and that is so lovely.

“Richie listened to the voices at first and rated them out of ten, and then watched the videos of the people talking and he rated them again. He went with his gut feeling on his choices, but I was really interested to see that with the videos, he went for the people who came across as the jolly, cheeky chappies - people I think he saw as representing his sense of humour.

“SpeakUnique usually create a voice from two voices blended together, but Richie just couldn’t narrow it down beyond three, so they’re doing three varieties

for him. It won’t be long now until Richie has his voice - that will be an amazing moment.”

While this project will have a life-changing impact for Richie, Jennifer hopes that other speech and language therapists will follow her lead and embrace voice banking - both for this type of work and for people with neurodegenerative conditions in ways they previously may not have done.

“This technology is there and we should be using it, but there is quite a bit of fear that still exists,” says Jennifer.

“While there seems to be a preconception that it’s high-tech so therefore you need to be an IT expert to use it, it really isn’t like that - I’m certainly no technology expert and it’s a really simple process.

“The search for a voice for Richie has taken on a life of its own but has turned into a really amazing shared project for us both, and has given me a real depth of relationship with Richie with so many more opportunities for communication.

“Using this technology is nothing to be frightened of and my biggest hope from what we’ve done over the past few weeks is that it can break down barriers around its use.”

For more information on voice banking, visit www.rcslt.org

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he progressive nature of Huntington’s disease creates many different challenges for those living with the condition, so it is vitally important that the team of clinicians involved in Huntington’s care, work together to ensure all progressive needs of the individual are met.

Two common complications as Huntington’s progresses are dysphagia (swallowing difficulties) and communication impairment. So, in this article we look how Speech and Language Therapists (SLTs) and Dieticians work collaboratively within Elysium Neurological services to provide complex care that is adapted to changing needs. We explore the benefits of this approach for the person living with Huntington’s disease and their families, and how an expert team approach will ensure that every individual who uses our services receives the appropriate level of care they require.

Huntington’s disease and dysphagia Dysphagia, changes in the nerves and muscles in the throat and face area that cause problems with eating and drinking, is a frequently identified complication of Huntington's disease (HD). Over time these swallowing issues can cause significant weight loss and chest infections from food bacteria or liquid repeatedly entering the airway when trying to swallow. Impaired mouth and throat control also may cause issues with communication and it becomes increasingly difficult for the individual to express themselves.

Without appropriate knowledge and experience of these complications, delivering person-centred care for people with HD can be challenging. Therefore, sharing best practice between clinicians and teams is paramount so that everyone is working towards the same care goals,

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putting an individual’s best interests at the centre of all care decisions.

In particular, the close working partnership of Speech and Language Therapists (SLTs) and Dieticians, is vital Sha ring best p ra c t i ve in providing high-quality complex care. SLTs have between clinic ia ns a nd specialised knowledge teams is paramoun t so t ha t in communication eve r yone is wo rking tow a rd s and dysphagia, whilst dieticians can practise the same care g oa l s, w i t h t he dysphagia assessment and individual's be st in t ere st s management as well as at t he centre o f a l l c a re offer clinical support for diet and nutrition related decisions. The c lose w orking conditions.

par tnership of S pe ec h and Language T he ra pist s and Dieticians, i s v it al in providing hi g h- qual i t y complex care.

Candida Ellis is an SLT from Badby Park, a specialist neurological care home in Daventry which provides rehabilitation, long-term care, respite and palliative care for people with progressive neurological illnesses, acquired brain injuries and spinal injuries. As Candida explains, through the collaborative working approach of the SLT and dietician, they are well placed to support someone with complex progressive needs.

She says: “SLTs and dieticians always work very closely together when providing care for HD patients or residents, covering a variety of different elements of care including communication, monitoring swallowing, incorporating the body’s positioning into that, and of course diet and nutrition.

“We focus on the whole person and so we prioritise understanding and learning as much as possible about the person we are supporting from the moment

we start working with them. We always try to promote independence, whilst managing risk, and so it is important that we work quickly to establish effective communication methods and techniques.

“We need to know what the person likes and dislikes, what decisions they want to make about their care so that we can help that person to have as positive quality of life as possible. That isn’t always easy as HD is a progressive condition and care needs are continuously changing but when you work together as a team it has a much better impact.”

Empowering choice in Huntington’s disease Understanding the ‘whole person’ in HD care and ensuring that care is personalised to each individual’s preferences also plays a significant role in diet and eating choices.

Shailini Ponnou is a dietician at St Neots Neurological Centre in Cambridgeshire and as she explains early assessment and regular reviewing of nutritional care plans are very important to maintain wellbeing and quality of life. At the heart of this planning, explains Shailini, must be the individual’s wishes – what the person wants must be included in all decisions.

She says: “Good nutritional care is fundamental to the provision of quality care for individuals with HD, and it needs to be tailored to each stage of the disease.

Plus, we need to take into account what the particular person needs depending on their weight and behaviour, for example their activity throughout the day and any feeding difficulties individuals may experience.

“I tend to take a very in-depth approach to establishing what a person likes. We spend a lot of time working with different communication aids so we can discuss food groups, we talk through the spectrum of flavours, types of cuisines, even what restaurants they used to go to.

S LTs a nd d i e t i c i a n s always work ver y closely together when prov i d ing c are f or HD p atients or residents, covering a va riety of d i f fe re nt e l e me nts of ca re including communica tion, monitoring sw a l lowing, incorp orating the body 's p ositioning in to t ha t , and of c ourse diet a nd nutrition.

Candida Ellis, Speech and Language Therapist

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Shailini Ponnou, Dietician

G ood n ut ri t i onal c a re is fundamenta l to the p rovision of quali ty c a re f or ind iv id ua l s with HD, and it needs to be ta ilored to eac h st a g e of t he d ise a s e. Plus we need to take into a ccount wha t t he pa r t ic ul a r pe rson needs dep ending on their weight and b e hav i our, f or e x a mple their a ctivity throughout the day, a nd any fe e d i ng d if f ic u lties individuals may exp erience.

“I believe that this level of information is important so that no matter what challenges are presented in the future we can respect the individual’s original choice. Even if they lose their ability to communicate as effectively, we have a record of their preferences and we can implement their choices.

“When you empower choice for someone with HD, it can really help deescalate behaviour as the condition progresses and can help reduce stress and agitation.

If you know that someone has a favourite flavour of drink or a taste of food that they like, you can make sure that even when diets become supplementbased they can still enjoy those flavours and will get comfort from their food at some level.”

Communication and future care planning Supporting the communication needs of individuals with HD is an important part of the care we provide at Elysium Neurological. Our expert team work closely with each individual to identify their preferred communication method so their individual wishes can always be incorporated in their present and future care planning.

As Candida Ellis, SLT at Badby Park explains, knowing the most effective communication methods for an individual is essential so that personalised care can

be provided at each stage of the disease.

She says: “As HD is progressive it is vitally important that we make sufficient plans for future care needs. We don’t want to wait until ‘crisis point’ so to speak. The best complex care looks ahead to see what likely scenarios the individual may face and how can we be prepared for them.

“We try to involve the family in the decisionmaking process as much as possible and allow adequate time for the resident and family to understand each decision and consider it fully.

“And that’s where collaborative working from other team members plays an important role. Behaviour, mood and physical abilities can change rapidly so noticing or monitoring changes in a person can happen throughout the day not just when an SLT or a dietician is with them. When an entire team is involved in monitoring and providing personalised care, then we can be prepared and provide the right level of care when it is needed.

“That’s why specialist HD training is so important - everyone involved in HD care should have specialist knowledge of what complications can occur and what happens when they do. In this way we can always ensure the best outcome for the individual.”

Suppor ting the communication needs of individuals with HD is an impor tant par t of the care we provide at Elysium Neurological. Our exper t team work closely with each individual to identify their preferred communication method so their individual wishes can always be incorporated in their present and future care planning.

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Working collaboratively in Huntington’s care As an individual’s care needs change over time, sometimes quite rapidly, a multidisciplinary team approach is essential to provide consistent quality care for those with HD. Matt Street, Therapy Lead at Badby Park expands upon the importance of collaborative working, not only between the SLT and a dietician, but all clinicians involved in the delivery of quality complex care.

He says: “There are many experts involved in the provision of complex care, and in particular with Huntington’s care. Clinicians cannot work in isolation – it must be a genuine collaborative approach with the individual’s needs and choices prioritised.

“For example, once an individual is diagnosed with dysphagia the SLT recommends the texture of food or fluid which will be most appropriate and safest. SLT’s will work together with occupational therapists and physios looking at posture, positioning, supportive aids such as cups and cutlery. They review the whole mealtime environment to make sure it suits the individual’s needs.

“Dietitians will look at meals and ensure There are man y e x pe r t s all nutritional needs and calorific intake involved in t he prov ision requirements are of complex c are , and in met, incorporating par ticular w i t h H unt i ng ton's food and drink preferences and care. Clinic i a n s c annot ensuring individuals work in isol at i on - it m ust are able to make be a genuine c ol l ab orat i ve appropriate choices about their diet. approach wit h t he They’ll work with individual 's ne e d s a nd chefs on meals and choices pri orit i se d . snack options and together with the Matt Street, Therapy Lead at Badby Park SLTs to ensure they meet the appropriate levels of texture modifications.

“Then the care team that provide round-the-clock support must be informed and trained about each person’s unique requirements so we can deliver personalised care.

“All the while the whole team must be flexible and creative in their support for changing and progressive care needs. They must make sure quality of life is maintained and monitoring the social and emotional impact of their work. A collaborative, multidisciplinary team approach is the only way to ensure each person has the expert care they need at every step of their For more information, please visit care pathway.” www.elysiumhealthcare.co.uk

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SUBMIT TO LOVE. EVERYONE CAN DO THAT. By engaging brain injury survivors in art, Submit to Love is supporting them to rebuild their lives, whilst also uncovering hidden or forgotten talents. NR Times learns more about the East London project which is enabling people to submit to the love of art "In a strange way, disability has freed me up to express myself in my art, and no longer care what others think. I have been forced by disability to come to terms with living in a less than perfect body in a less than perfect world.”

For Chris, a 68-year-old retired science teacher and youth and community worker, art has enabled him to accept his new self.

Having developed stroke-like symptoms after an operation seven years ago, which have affected his writing hand, face and speech and means he now walks with the aid of a stick, Chris produces artwork to explore his new self and how he is viewed.

Among his works are a series of paintings which ‘reimagine’ iconic artworks with him as the central figure - The Scream, Ophelia and Venus.

“Art was a way of exploring and communicating what it felt like to experience big changes in my life. ’Normal’ people often feel they have to get everything right to produce art,” says Chris.

And through the Submit to Love project, Chris is

one of many brain injury survivors who have been enabled to discover and build new talents and means of dealing with their disability.

Having been encouraged by the studio manager to pick up a paintbrush and paint for the first time in many years, Chris, and many others, have discovered huge benefits in doing so.

The art project, part of Headway East London, has engaged hundreds of survivors in this way over the past 20 years, supporting them gradually and at their own pace to produce painting, printmaking, ceramics, embroidery and mosaics, which are frequently so good they are displayed externally - pieces have been part of exhibitions in the Southbank Centre, Southwark Park Gallery and the Autograph Gallery.

Some of the project’s artists - with ages ranging from people in their 20s through to over 80s - have also been given the opportunity to discuss their work in the Tate Modern, Turner Contemporary, RA and Barbican Centre.

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TH ERAPY

Ever yone's g ot to love. W hen yo u love someo ne, you enjoy them and yo u li ke thei r w ork . It's hi g hly i mpor t ant , t hat i s.

Su b m it to Love. Ever yone can do t hat .

You ju st t hi nk about any thi ng yo u w ant , a nd yo u thi nk , 'Yeah, I could do t hat .'

And you put pen to paper.

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And through Submit to Love, whose mission is ‘discovery through art’, survivors are able to take a newly-discovered - or re-discovered - talent and use it to aid their rehabilitation.

“One thing we’re very clear about at Headway East London is that the studio doesn’t offer art therapy in the way that people will assume,” says Laura Owens, from the charity.

“The vast majority of the studio artists are self-taught and when they join us they haven't done any art since school, or at all, previously. We encourage artists to develop their own artistic practice and support them to build up a portfolio of work, and over time each artist develops their artistic 'voice' and unique style.

“A few people now think of themselves predominantly as artists, which is fantastic as the studio is providing new roles and identities, but it’s definitely not something we’re actively pushing for.

“More than anything we just want people to create art about the things they are interested in and what inspires them, however unusual or unexpected that may be.”

The Submit to Love studio - which, in pre-COVID times, could welcome up to 40 artists a week - has developed strongly since being established, and is led by the creativity of the survivors it engages and continues to grow in response to that.

“Art at Headway East London began over 20 years ago, when the charity was first established, with a table and a sink in the main centre, growing and growing until it moved into its current space in a converted railway arch next to the main building,” says Laura.

“Like any activity at Headway, it was started because our members wanted it. We try to co-produce our offering, meaning we’ll only run something if there’s appetite for it, and thankfully, with art, this appetite only increased.

“Some of the artists use their brain injury and its effects to inform their work whereas others don’t. Some talk about the way art has helped them to process the changes and losses they have experienced as a result of their brain injury, whilst others see it merely as a fun pastime.

“Over time, as members started to self-identify as artists, we felt that was really important that the studio had its own identity and name, separate from Headway.”

T HE RAPY

The name Submit to Love was born from the words and artwork of Tony Allen, one of the studio artists.

In creating the new identity, Tony said: "Everyone's got to love. When you love someone, you enjoy them and you like their work. It's highly important, that is.

Submit to Love. Everyone can do that. You just think about anything you want, and you think, 'Yeah, I could do that.' And you put pen to paper."

“We are led by the artists and want their voices to always be at the forefront,” says Laura.

“Some of our artists have been working on and refining their craft in the studio for over 20 years, so

it’s no surprise they have a high-quality portfolio worthy of exhibiting.

“Having said that, there are some artists who are fairly new to art who have a bold vision and distinguished style from the start.

“The fact is, so much great art exists outside of the traditional spaces, if we’re willing to look for it. We’re seeing this happen a little more, but there’s still a lot of work to be done to equally value and appreciate artists working outside of the mainstream.”

Despite lockdown, work has continued in earnest, with sessions being held via Zoom and the studio holding its Print Fest online, which showcases the different printmaking practices artists use.

Held for the first time and in-person in 2019, which enabled artists to meet the project’s many supporters and enabled them to buy the artwork, it was successfully translated into an online event for 2021.

And while the project team are eagerly awaiting the opportunity to bring everyone back together postlockdown, it has given an opportunity to reflect on the many achievements of the survivors, and of the Submit to Love project itself.

“We’re so proud of the growth of the studio in the past few years,” says Laura.

“Not only have we seen our artists work exhibited in Southbank Centre, Southwark Park Gallery and the Autograph Gallery, we’ve also supported our artists to talk about their work and run workshops in the Tate Modern, Turner Contemporary, RA and Barbican Centre.

“We’re really excited to be able to show our first embroidery exhibition at Autograph when the gallery reopens in early Summer 2021. Alongside that, we’ve completed studio commissions for clients like It’s Nice That, and we’re selling our own range of merchandise products.

“Being situated in East London also means that we’ve had the pleasure of working with some fantastic, talented guest artists – too many to name!

“We’re excited to see where this leads us in the coming years.”

To learn more about the project, and to buy some of the artists’ work, visit www.submittolovestudios.org

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TECH N OLOGY

Research partnership formed to advance global rehab robotics A leader in rehab tech has formed a new research partnership to help advance its globally-significant work into delivering patient rehabilitation.

Fourier Intelligence has partnered with Kobe University, Japan, to promote advanced rehabilitation technology and integrate group therapy into the clinical setting.

Fourier Intelligence said the Memorandum of Understanding partnership will help to advance its global vision in promoting accessibility and adoption of rehabilitation technology.

The research will focus on efficacy research on the upper limb robotics for patients, with the long-term aim that the partnership will collaborate on multi-centre trials that will involve Fourier Intelligence’s extensive global network of researchers and laboratories.

The global rehabilitation market is forecast to reach $2.617billion by 2026, with the Japanese market earmarked as a particular opportunity given its ageing population. By 2035, it is estimated a third of the country’s population will be aged 65 or over.

Robotics are seen as providing a key opportunity for elderly people to regain independence in their day to day lives, reducing the need for clinical intervention.

The new alliance is the latest to be formed by Fourier Intelligence as it pushes forward with

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TECHNOLOGY

its work in rehabilitation robotics, and comes only weeks after the business also teamed up with the National University of Singapore’s (NUS) Faculty of Engineering to help advance its work in neurorehabilitation robotics.

Two further partnerships, with tech leaders HumanXR and maxon Group, are also helping to drive its work on a global scale into improving rehab potential for patients.

Kobe University said its partnership with Fourier Intelligence provided the opportunity to integrate education, research, and technology to support clinicians in delivering top-quality rehabilitation services.

T h is c ollaborat i on ai m s to in troduc e prev i ously res earc ho rient e d projec t s on re hab il itation ro bot i c s i nto c li ni c al s e tting s .

T h is wi ll t re me ndously im p rove the e ffi c i e nc y of c li ni cal s er vic e s f o r c li ni c i ans and resu l ting in be t t e r c li ni c al out c o me s f o r pat i e nt s.

“We’re delighted to be able to forge this new partnership with Kobe University, which is one of the highest-ranked universities in Japan,” says Zen Koh, Fourier Intelligence’s Global Hub Chief Executive Officer.

“This collaboration aims to introduce previously research-oriented projects on rehabilitation robotics into clinical settings. This will tremendously improve the efficiency of clinical services for clinicians and resulting in better clinical outcomes for patients.”

“We are excited in this partnership with Fourier Intelligence and to join their global research network in introducing advanced rehabilitation technology for Japan’s rehabilitation services,” says Professor Rumi Tanemura, from the Department of Rehabilitation Science who is leading the research efforts in the partnership.

“We believe this is mutually beneficial, as Kobe University trains some of the best therapists in Japan and combining our in-depth clinical knowhow, we can jointly develop technologies that will be highly relevant for our hospitals.”

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UK AB IF NEWS

UKABIF Extends Range of Legal Resources A new resource is being launched to enable people to find barristers with experience in acquired brain injury cases.

The United Kingdom Acquired Brain Injury Forum (UKABIF) is compiling a list of specialist barristers, which is open to those who can comply with the criteria and have the appropriate levels of knowledge and experience.

The list will be available through UKABIF’s website and will enable users to find a barrister by name or location.

UKABIF’s executive director, Chloe Hayward, says: “The list will complement our existing list of approved lawyers which gives details of firms who have expertise in personal injury and Court of Protection cases.

“This list is widely used, and we refer to it during all of our enquiries. We were finding that we had increasing numbers of people looking for barristers and so it seemed a good idea to establish a sister resource.”

Barristers who would like to join the list need to be members of the Personal Injury Barristers Association and be accredited by the Association of Personal Injury Lawyers as Specialist Counsel. They will also need to join UKABIF. Gerard Martin QC, a trustee of the charity, adds: “As a practising barrister for over 40 years and a silk for the last 20 years, I found joining UKABIF has given me a much broader perspective in my understanding of the effects of brain injury, which has enhanced the way in which I practice.

“The opportunities provided by the charity for increasing knowledge and insight into the effects of brain injury increase your knowledge of experts in the field of brain injury, and in turn, improve the way you perform as a practitioner.

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“The charity’s core values aim to promote the best interests of those with a brain injury, both traumatic and non-traumatic, irrespective of whether they can pursue a claim or not for compensation.

“The charity brings together from diverse fields specialists in their subjects across brain injury rehabilitation, education, sport, the criminal justice system, the NHS and academia.

“Joining UKABIF will help you make a difference in the wider community for those with brain injuries. For example, the charity is closely involved in helping stimulate change by increasing knowledge of sport related head injuries with the aim of reducing the incidence of such injuries “Joining UKABIF will deepen your understanding of the impact a brain injury can have across every aspect of a person’s life. I am proud to say UKABIF have helped lead the way to effect changes for the better in rehabilitation of the brain injured, in increasing knowledge of brain

injury in schools, prisons and the criminal justice system.

“Join UKABIF and help us make a difference.”

Benefits of UKABIF Membership include regular news updates, free vacancy and event listings, introductions to our regional groups, discounts on UKABIF conferences and events and virtual networking through our website.

UKABIF will raise awareness of the barristers list through its marketing and social media channels and it will also be promoted at UKABIF conferences and events.

For further information please contact info@ukabif.org.uk or visit www.ukabif.org.uk/membership

INTERVIE W

‘Rehab should be about client goals’

By engaging clients in goal-centred rehab, which begins at the earliest stage possible, strong outcomes can be achieved in both their physical and mental health, says Kate Sheehan. NR Times meets the occupational therapist whose personcentred approach was recently seen in ITV’s Finding Derek documentary, through her work with the family of TV presenter Kate Garraway

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The photo of the woman skiing with her daughter is one Kate Sheehan will always remember.

“Got there. Thank you,” read the accompanying message.

Five years prior to that picture being taken, occupational therapist Kate had sat by the woman’s bedside in Stoke Mandeville hospital, following major surgery on a spinal injury.

“I sat with her and asked what she wanted to do, what was her goal. She said she wanted to go skiing with her daughter,” recalls Kate.

“I was the first person who had asked this - at that point, the focus was on how she would go to the toilet, get washed, what were her passive range of movements.

“But it’s so important to have an end goal and then work out how to get to that point. Sometimes it may take years, but it is critical for a person’s mental health to have something to aim for when they engage in their rehab.

“People need and want hope.”

The fact this woman achieved her goal, set in the earliest stage of recovery, still resonates with Kate, director of The OT Service, based in Northumberland.

“It was really lovely to know that she had achieved her goal. For me, having client goals is the most important thing and that’s what rehab should be about,” says Kate, who has over 30 years’ experience in occupational therapy.

“While we routinely work with clients for many years, often they’ll reach the point where they don’t want, or maybe feel they don’t need, professionals around

INT E RVIE W

M o s t p eo pl e d o n’ t ne e d re ha b f o r a s ho r t p e r io d o f t ime , it ’s much mo re lo ng e r t e rm, a nd w hil e ge t ting them ho me a nd o u t o f ho sp it a l is ver y i m p o r t a nt , w e w a n t t he m to get ba ck to d o i ng t he t hings t hey wa nt a nd ne ed to d o . S o me p eo pl e may need 1 8 mo n t hs to re b u il d t he ir s trength, a nd t ha t ’s ho w lo ng t hey sho uld be s u p p o r t e d f o r. them, so they’ll take a break. But they know where we are if they want to come back.

“I have one client who I’ve known since he was five years old, we supported him through his A-levels and university through to him moving into his own property. Recently he came back to me having been married, and told us his wife is pregnant and could we help him in preparing for the future.

“For some people, it might just be an hour on the phone occasionally, for others they might need more, but sometimes knowing who to speak to when you need some support or advice is the main thing. We’ll always do all we can to help.”

Getting a client back into their own home is vitally important to rehabilitation, says Kate, whose recent appearance in the ITV documentary Finding Derek where she supported TV presenter Kate Garraway in preparing for her husband, Derek Draper, returning home having been hospitalised for a year with COVID-19 - showed her commitment to achieving this for a client.

“Going home is something that means so much to someone, but if a person who had been catastrophically injured returns home to one room with a commode, that’s not going to aid their recovery,” says Kate, whose own specialism is housing.

“If they can return with a series of minor adaptations, with a view to major renovation going forward, then this is something we can work with. If the person is now a wheelchair user and always loved to cook, but now their kitchen isn’t suitable for this, then we can look at how to achieve that, both short term with equipment

and minor changes or long term re designing the kitchen to meet their own needs.

“We have one client in this exact position, where we have ordered a standing wheelchair, so she’ll be able to get back to cooking in her own environment.”

While privately-funded rehabilitation enables people to access the bespoke support they need, the ongoing resource issues around community rehab continue, with pressure building even further from the impact of the COVID-19 pandemic.

And with the already significant demand being exacerbated by the newly-recognised need from Long COVID patients, Kate believes action must be taken to enable earlier and more lengthy community support.

“Rehab needs to begin early, the earlier the better. If someone has had a catastrophic injury, where their whole world appears to be falling down around them, the wonderful medical team are there to save their life - but so many of our clients say they feel like a human body, not a human being at that point,” she says.

“There isn’t enough rehab provision in the statutory sector and it’s such a postcode lottery too. In some parts of the country, someone could get six to eight weeks, whereas in others that could be only one or two.

“Most people don’t need rehab for a short period of time, it’s much more longer term, and while getting them home and out of hospital is very important, we want them to get back to doing the things they want and need to do. Some people may need 18 months to rebuild their strength and functional skills, and that’s how long they should be supported for.

“The long-lasting effects of COVID - including everything from the fatigue and brain fog, through to the trauma of being ventilated and of the illness itself - are probably going to be with us for decades, and people need to be supported.

“I really wish the Government would see beyond the pounds and pence of care costs and look at the bigger picture. The personal impact on someone who is unable to work, who has problems with their mental health and probably other health issues too, is going to be very significant and have potentially long term care needs if suitable rehabilitation is not available to them.

“If we can support people from the earliest stages to get back to work, to rebuild their lives, perhaps even to save their relationship - separation, very sadly, becomes more likely after serious injury - then that is much better all round for society.”

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Cooking and rehabilitation a stroke survivor’s story Craig Pankhurst, founder, A Stroke of Luck There is nothing positive in having a stroke. But positive things can come from experiencing stroke. And one of the things which has helped my recovery is finding a place in the house where I feel relaxed, able to focus, and to try and be creative. And that room is the kitchen.

I have always had an interest in food, mainly eating it of course, and have been fascinated by the creativity of chefs. I decided early in my rehabilitation that away from fitness and exercise, I needed something to focus my creative juices on to support the recovery journey from stroke. And with having zero talent in art and having a real appetite for food - terrible pun! - I knew the kitchen was going to be my place of solace.

This month I will be celebrating my third anniversary of surviving my stroke by cooking a three-course dinner.

As yet, I am undecided what the menu will be and how it will work out, but whatever the outcome, the process of cooking I thoroughly enjoy. Here, I share one of my favourite recipes with the readers of NR Times.

Bunny Chow 1kg of lamb (I choose to marinade in a Pinotage wine for 24 hours) 1 knob of ginger, thumb-sized, finely diced 2 garlic cloves, finely diced 4 shallots, finely diced (you can use another kind of onion if needed) 1 tbsp of madras curry powder 1 tbsp of chilli flakes, cayenne 3 red chillies 1 tsp dried oregano 3 green chillies 1 tsp ground cinnamon 1/2 tsp salt 1 tsp ground cumin 400ml of coconut milk 1 tsp ground coriander 125g of button 1 star anise mushrooms 4 cloves 2 tbsp of lime juice 300g of potatoes, 1 tsp soft brown sugar cut into cubes 2 loaves of bread, 200g of onion squash, unsliced cut into cubes 2 tbsp of nut oil

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Method Add the oil to a big pot or saucepan and heat until it starts gently bubbling (one minute). Add the shallots, ginger and garlic and fry for a few minutes Add all of the spices to the pot and stir. Fry for 60 seconds. Don’t worry about it appearing dry, as soon as you add the lamb, the moisture from the meat will change that.

Add all of the lamb and coat in spices by stirring it around. The moisture from the meat will ensure all the spices cover the meat and your kitchen will be full of the most delicious smell Now the meat is cooking in the pan, it’s time to add the extras. Get the potato, squash, chilis, salt and coconut milk into the pan and start stirring. There should just be enough coconut milk to cover all of the other ingredients, if not then don’t be shy about adding a little more!

Now bring the curry to the boil and then turn the heat down to simmer (keep it bubbling but gently) for 25 minutes, stirring from time to time so that you don’t ruin your pan After 25 minutes, add the mushrooms to the pan and simmer for another 20 minutes, or until the curry has thickened. You don’t want to be left with a very wet curry as remember it is going into hollowed out bread!

So, if you’re confident that your curry is not too wet, add the lime juice and sugar and stir them through.

This will give a tiny extra tang to the already deep curry flavour To make the housing for the curry, you need a full loaf of bread. Just make sure you don’t buy it pre-sliced Cut off the end and then rip out the middle. Make sure you don’t rip out too much though! You want some of the white of the bread to soak up the moisture of the curry sauce My wife tells me as a proud South African the only way to eat Bunny Chow is to tear the bread with chunks of the curry on. That way, you get bitesize portions full of the decadent and wonderful flavours. Oh, and pour the rest of the Pinotage into a glass and enjoy!

Good luck!