NR Times issue 16

ISSUE 16 QUARTERLY

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E DITO R' S NOT E

Working together is a powerful thing Having strength in numbers, and working as a team, are the stuff of management cliché. But in these disjointed and disorienting times, are perhaps what is needed most. By working as a community, we can advance stronger, as one.

As we – hopefully - emerge from the pandemic via a quickening vaccination programme, we can look back at the past year and reflect.

The challenges have been many. From the agony of people having to isolate in their homes for the best part of a year, through to businesses having to redefine their working practices almost overnight, battling the most crippling of economic conditions along the way. But we have got through it together.

The focus on working together has been building throughout the pandemic, and the foundations for closer cooperation than ever before have been laid.

And we can only hope that we continue with this commitment to helping each other, for the benefit of us all.

In preparing this issue of NR Times, this theme comes through loud and clear. We report on the creation of a global group of therapists who work together to harness the power of tele-rehab; and the fast-tracked research dedicated to developing best practice in the use of remote working.

Then there is the creation of a new professional accredited standard in case management, supported

Andrew Mernin, editor-in-chief andrew@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

by all three main membership bodies; plus the opening of a new neurological care centre, which has helped to create a new standard in community partnerships.

Add to that the coming together of the sports community, with members uniting around the need for better protection and safety measures for players with head injuries.

These are just some of the many, many examples of working together which are happening in the rehab world, and continue to pave the way towards a stronger future.

At NR Times, we are proud of the role we play as part of the neuro rehab community, in being able to share the stories of so many committed people, organisations and businesses, who have pulled together in the most admirable way to get through the pandemic.

Looking forward to a future where we can meet again in person - I for one will be delighted to have a break from the constant Zoom calls! In the meantime, do please get in touch with our team anytime - we’d love to hear about your experiences and work in neuro-rehab.

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

Deborah Johnson, editor deborah@aspectpublishing.co.uk Editorial contributors: Johanna Perra 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

22 WO RK ING TO G E THE R VIRTUAL LY How therapists are embracing technology

0 6 N EWS

The latest from the world of neuro-rehab.

28 O PE NING DO O RS DURING LO C K DOW N Introducing one of the UK’s newest neurological care centres

46 FRO M PAT IE NT TO FUNDRAIS E R The brain injury survivor changing the lives of others

3 6 P ROTECTIN G P L AYER S Is revolutionary new product the answer to safer sport?

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C O NTE NT S

4 8 SU RVIVOR T UR NED WR I TER

58 W E LC O M ING DIS A B L E D VIS ITO RS

How recovery from a stroke inspired a book

The new app transforming customer service

6 2 JAUND IC E WAR NI NG One mother’s quest to change NHS policy

66 C HANG E M A K E R New case management body formed

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N EWS

UK’s only service developed to support PostPolio Syndrome A specialist neurophysio service to support people with Post Polio Syndrome (PPS), believed to be the only programme of its kind in the country, has been created.

PhysioFunction has established a dedicated offering for people who have had polio earlier in life, but for whom some effects have returned years later with the onset of PPS. The programme, which incorporates aquatic and land-based physiotherapy, has attracted a number of people from around PhysioFunction’s base in Northampton, but through the addition of telerehab during lockdown, has involved participants from a much wider area.

PhysioFunction engages members of the British Polio Fellowship in its programme and has also secured funding from Rotary International in recognition of its innovation.

Led by neurophysiotherapist Kirsten Good, the specialist service was created in response to the needs of one client initially, but expanded once the demand for such bespoke therapy was realised.

“We have a number of polio survivors attending our groups every week, and the funding we have had to subsidise the programme has made it very affordable for them,” says Kirsten, who was named a Paul Harris Fellow by the Rotary Foundation of Rotary International for her work in developing the initiative.

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Breakthrough in understanding Alzheimer’s Disease Brain cells vulnerable to Alzheimer’s Disease have been identified for the first time, in a breakthrough scientists hope could lead to targeted treatments to boost the brain’s resilience.

It has so far remained unknown in Alzheimer’s research why some brain cells succumb to the disease years before symptoms first appear, while others seem unaffected by the degeneration surrounding them until the disease’s final stages.

Now, in a groundbreaking study, the neurons that are among the first victims of the disease – accumulating toxic

‘tangles’ and dying off earlier than neighbouring cells - have been identified for the first time.

“We know which neurons are first to die in other neurodegenerative diseases like Parkinson’s disease and ALS, but not Alzheimer’s,” says co-senior author Martin Kampmann, associate professor in the UCSF Institute for Neurodegenerative Diseases.

“If we understood why these neurons are so vulnerable, maybe we could identify interventions that could make them, and the brain as a whole, more resilient to the disease.”

NE W S

MND treatments could be developed following new research Pioneering treatments could be developed for people with motor neurone disease (MND) after a new study shed light on how the damage to nerve cells can be repaired by improving the energy levels in mitochondria.

Researchers have discovered that, in human stem cell models of MND, the axon - the long part of the motor neuron cell that connects to the muscle - is shorter than in healthy cells.

The laboratory study also found that the movement of the mitochondria, which travel up and down the axons, is impaired.

This was caused, the study found, by a defective energy supply from the mitochondria and that by boosting the

mitochondria, the axon reverted back to normal.

The study was led by Dr Arpan Mehta alongside Dr Bhuvaneish Selvaraj and Professor Siddharthan Chandran from the Euan MacDonald Centre for MND Research at the University of Edinburgh.

The researchers used stem cells taken from people with the C9orf72 gene mutation, which causes both MND and frontotemporal dementia. They used these stem cells to generate motor neuron cells in the laboratory to use in their experiments.

The study also examined human postmortem spinal cord tissue from people with MND who had donated their tissue

through the Medical Research Council Edinburgh Brain and Tissue Bank.

The results supported the findings from the stem cells.

MND, also known as amyotrophic lateral sclerosis or ALS, is a progressive condition that causes muscles to waste away.

It occurs when nerve cells called motor neurons, which send messages from the brain and spinal cord to the body’s muscles, stop working properly.

More than 1,500 people are diagnosed with MND in the UK each year, but no cure has yet been found.

Although the research focused on the people with the commonest genetic cause of ALS, researchers are hopeful that the results will also apply to other forms of the disease.

The results of the study are now being used to look for existing drugs that boost mitochondrial function and may be able to be repurposed to treat MND.

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N EWS

Arm and hand function could be regained following spinal cord injury Treatment could be developed for arm and hand dysfunction among people living with spinal cord injury through a pioneering new research project.

A pilot study of new therapy for improving upper extremity function is now underway, following funding from BrainQ Technologies to the Kessler Foundation.

BrainQ is an Israel-based startup which is working widely in precision medicine to reduce disability following neurodisorders.

Thousands of new traumatic spinal cord injuries occur each year, with statistics showing around 17,500 of those are from the United States alone, and more than half of those people experience loss of motor function of the upper extremities which limits their independence and adversely affects their quality of life.

“To achieve the best outcomes after spinal cord injury, restoring arm and hand function must be a priority in rehabilitative care,” says Dr Steven Kirshblum, director of the Spinal Cord Injury Program for the Kessler Institute for Rehabilitation.

“This study is an important first step towards increasing the ability of individuals to function more independently at home, in their communities, and the workplace,” he adds.

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N EWS

Rehab tech firm Fourier Intelligence receives investment boost

Fourier Intelligence has completed its Series C financing round led

by Vision Plus Capital, a venture capital fund focusing in digital healthcare and deep tech.

Qianhai FOF, one of Fourier Intelligence’s current shareholders, co-invested in this round too.

This new round of funds will be mainly invested to further expand Fourier Intelligence’s already impressive product line, to enhance its fully integrated intelligent rehabilitation robotic system, known as the Fourier Intelligence RehabHub Concept.

“The intelligent rehabilitation has been possible since the advent of the digital and intelligence era. Artificial intelligence (AI) is the developing trend of the rehabilitation field while the viability of

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Fourier’s business model has been verified,” says Fourier Intelligence’s founder, group CEO and executive chairman Alex Gu. “Our investors fuel momentum into the company, which will further iterate and replicate the products to enter a high-growth period. We aim to form an industry-driven platform to achieve the strategic vision of Robotics for All.” “As if the central kitchen that enables the restaurant industry to realise chain operations across the country and even globally, the standardisation of clinical rehabilitation protocols will also support the development of rehabilitation departments that deliver positive clinical outcomes consistently.

Our target is to enable 50-100 thousand rehabilitation facilities globally through our RehabHubTM Concept, and eventually provide quality rehabilitation services to millions of elderly, paediatric, and neurological patients,” he said.

Headquartered in Shanghai and with offices in Singapore, Malaysia, Guangzhou and Zhuhai, Fourier Intelligence is an innovative global technology company dedicated to researching, manufacturing, and marketing of rehabilitation robotics and comprehensive intelligent solutions.

Founded in 2015, the company has teamed up with experienced researchers, engineers, and medical specialists to develop the complete rehabilitation system to serve hospitals, communities and patients.

Tian Min, partner of Vision Plus Capital, says: “We are excited about this collaboration with Fourier Intelligence, and we are confident that this investment will serve as the catalyst that will further fuel the already excellent growth trajectory Fourier Intelligence has been experiencing for the past two years. With its sterling track record in developing innovative, clinically applicable fully-integrated rehabilitation solutions as well as delivering proven rehabilitation medical services to create

a complete rehabilitation ecosystem."

She adds: “Rehabilitation is an important and vastly underrated industry segment with huge market potential. We are fully convinced that Fourier Intelligence is well-positioned to lead this trending industry globally, with its proven technology solution system (RehabHubTM), which consists of robotics, AI, big data, cloud-based patient management systems, and clinical service delivery model.”

Fourier Intelligence co-founder, group deputy CEO, and chief strategy officer, Zen Koh, says: “Fourier Intelligence has achieved encouraging growth and positive developments over the past years. More than 1,000 hospitals and research institutes have successfully installed technology solutions developed by Fourier Intelligence, across 30 countries worldwide. To ensure continuous technological innovation, Fourier Intelligence has established several joint research labs.

Such as the Shirley Ryan AbilityLab based in Chicago, the ETH Sensory Lab based in Zürich and the Advanced Robotic Lab based in the University of Melbourne. Such strong global research networks are rare within our industry and is key towards our success.”

Recent studies indicate that rehabilitation resources are incredibly scarce and unevenly distributed across China. The shortage of rehabilitation therapists are known to be as high as 300,000, and there is a severe lack of rehabilitation service capacity.

Current practices are human-intensive and lack efficiency. It is estimated, in just China alone, the anticipated market size for rehabilitation and its related industry exceed 100 billion RMB (around £11bn).

To address this significant shortfall, Fourier Intelligence launched its RehabHub concept, aiming to improve the adoption of rehabilitation robotics and technologies in rehabilitation facilities.

RehabHub is designed to improve efficiency and efficacy and transform the conventional rehabilitation approach.

NE W S

Funding secured to establish stroke-COVID link New funding has been assigned to help better understand the link between stroke and COVID-19.

Growing evidence indicates a strengthening link between patients contracting coronavirus and also having a stroke.

Initial global research has identified a number of patient groups who are more likely to have a stroke, including those with pre-existing conditions affecting their heart and blood vessels, those with severe COVID-19 symptoms, as well as people of Asian ethnicity.

Indications also point to such people

experiencing stroke in such situations being at least six years younger, on average, with symptoms being more significant.

Now, the Stroke Association has assigned funding to help increase understanding of COVID-19 and stroke further, and find more evidence of at-risk groups.

Its research - working alongside health and social care professionals and researchers in the UK - will help to build a more detailed picture of who has a stroke after a coronavirus infection and what puts them at risk, helping to guide new treatments which could reduce this risk.

Dr Richard Francis, head of research awards at the Stroke Association says: “There is growing evidence that people with more severe coronavirus infection are at an increased risk of stroke compared to those with a milder case.

“In addition, people that have a stroke and coronavirus are likely to be younger than expected.

"This could add up to more people living with the devastating effects of stroke.

“This highlights the importance of research to understand how coronavirus can increase the risk of stroke, particularly stroke caused by a blood clot, which is the most common type.

“I’m pleased that our charity has responded by funding this urgently-needed research in this rapidly developing area.”

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N EWS

Huge demand for services expected to increase during 2021 Growing demand is expected from people with brain injuries and neurological conditions in accessing support with mental health, Long COVID and employment rights, a specialist charity has revealed.

The Brain Charity has seen a 70 per cent increase in demand for its services from people across the country during the pandemic, a level it believes will grow further still as the effects of the pandemic continue to impact.

In response, the charity has vastly increased its support network nationally, taking many of its in-person group sessions online, enabling people to participate from well beyond its Liverpool base.

And despite the huge challenges facing charities amidst the economic climate, The Brain Charity remains confident for its future and committed to offering the range of practical, emotional and social support it has done since its foundation in 1993.

“The increase in demand has been massive and we’ve seen a surge in three key areas, which we expect to continue for some time,” says Tui Benjamin, head of communications and fundraising at The Brain Charity.

“Mental health has been a huge area. For those who had mental health struggles before the pandemic, we are seeing they have been hugely exacerbated. There is a big demand for our free counselling and phone befriending. There have been some particularly awful cases, this situation has really sent shockwaves through people’s lives.

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“Long COVID has been an area in which we’ve seen more recent growth, and we expect that to be a big one for the year ahead. As the neurological side effects became more definitely linked with Long COVID, such as the chronic fatigue, memory loss and brain fog, people have started to come to us.

“And amidst the recession, employment is a growing issue. People with neurological conditions are too often at the back of the queue, and that queue has grown so much longer with so many people now being in the jobs market.”

Since its foundation, the Brain Charity has supported hundreds of people and their families to understand and cope with their condition and diagnosis, assisting with matters from welfare benefits and legal advice to counselling and coffee mornings.

And despite the restrictions and challenges posed by the pandemic, its 30-strong team have redoubled efforts to ensure they remained accessible to those who need it.

“We understand that a brain injury or diagnosis of a neurological condition can be devastating, it can leave your family life in tatters, so we are here to give the plainspeaking practical advice and support that we know is needed,” says Tui. “Social isolation and loneliness is very

NE W S

common with an invisible disability, and people can feel they are removed from society. We’ve always loved getting people out of their front doors and into the centre, but we’ve been able to react very quickly in moving sessions onto Zoom that would’ve been held in person.

“One advantage of this has been our ability to engage with people from a much wider area. If we held sessions in Liverpool, we’d usually get people from Merseyside, Cheshire and Manchester, but through our Zoom groups, we’ve had people from Cornwall and Newcastle. From these strange and awful times, that has been a big positive.

“Our phone service has been there as it always has been, we have not closed and have continued to be there for anyone who needs us.”

As for all charities, fundraising remains a big challenge, but The Brain Charity remains confident in its future, and will continue its online fundraising innovations.

“Our huge surge in new demand came at a time when fundraising was going down, our events and street collections had to be paused, our cafe and charity shop were closed, and our corporate room hire also had to be put on hold. But we were able to innovate and react to this quickly,” says Tui.

“We’d never run a Christmas appeal before, but our Sixmas appeal to raise £6,000 has actually raised over £11,000. People really got on board with it doing activities around six, whether that was running 60 miles during the month, or having a coffee morning with six other people on Zoom. We were delighted with how it was received.

“We know it’s going to remain tough for some time, but we’re confident and financially will be OK, and we’ll continue to innovate until the big events can come back. We have a great team here and our core message is optimism.

We’ll always be here for anyone who needs us, and we’ll get through this together.”

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N EWS

Premier League introduces concussion substitutes Concussion substitutes are to be introduced into football, following years of campaigning; with Premier League clubs now adopting the policy to help address the need to protect players from the effects of head injury.

In a trial move, teams can use up to two substitutes in the event of head injuries, which will be in addition to the usual three substitutions that can be made in a normal match.

The substitutions will be permanent, and not for 10-minute durations as in rugby, to allow for players to leave the pitch for medical assessment and return if deemed able.

The Premier League is the first football competition in the world to adopt the use of concussion substitutes, and while a step forward, brain injury charity Headway argues that more needs to be done.

“We’ve been pushing for many years to bring football up to date with other sports in terms of concussion substitutes, but this plan involves permanent substitutes rather than concussion

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substitutes,” deputy chief executive Luke Griggs tells NR Times.

“So in that sense, it’s a bit disappointing.

“It sounds great that football is introducing this measure which has been needed for a long time, but in practice, the medical assessment of the player is still going to have to be made in that three minute window on the pitch, rather than in the quiet confines of the dressing room if you had ten minutes,” says Griggs.

“You also need a degree of honesty from the players in being able to assess them properly, and for them to say they feel nauseous and have blurred vision after a collision. If they know they are going to be taken off for the whole match, rather than the potential to return after ten minutes, then they might not want to be so honest.

“Of course we realise that even in ten minutes some symptoms may not present themselves, and it could be 24 hours later or maybe longer. Ten minutes off the pitch to make an assessment is an awful lot better than three minutes on it.”

NE W S

Breakthrough in understanding imbalance after TBI A condition that causes loss of vertigo perception and imbalance has been diagnosed in traumatic brain injury patients for the first time, which could yield breakthroughs in the development of new treatments and diagnostic tests.

Of 37 patients with acute traumatic brain injury (TBI) involved in the study, 15 were diagnosed with a newly characterised neurological diagnosis called vestibular agnosia - a condition in the brain which results in loss of vertigo perception and imbalance.

The impact of such a condition is shown through statistics which reveal TBI patients with balance problems are twice as likely to be unemployed six months after their injury, compared to those without balance dysfunction.

The research, from Imperial College London and clinicians at Imperial College Healthcare NHS Trust, also found that these patients have worse balance problems than TBI patients without vestibular agnosia and are unlikely to experience dizziness - one of the main criteria to assess balance problems in TBI patients.

As a result, doctors are seven times more likely to miss cases of balance dysfunction in TBI patients with vestibular agnosia than in those without.

The study is the first to show vestibular agnosia in TBI patients and the researchers believe that current

guidelines should be updated to include screening and laboratory tests for TBI patients for vestibular agnosia so that it can be diagnosed and managed at an earlier stage.

“Imbalance affects a majority of TBI patients leading to them having falls fairly frequently,” says study lead Dr Barry Seemungal, consultant neurologist at Imperial College Healthcare NHS Trust and honorary senior lecturer in the Department of Brain Sciences at Imperial College London.

“Our study is the first to identify loss of vertigo in some TBI patients and explain why they have balance problems and falls. This finding could lead to the development of new treatments and diagnostic tests.

“Importantly, current guidelines require updating so that clinicians can screen for vestibular agnosia in TBI patients at a much earlier stage as common treatable balance problems will be missed if the patients do not have access to these tests.

“We believe that diagnosing and treating these balance problems early will lead to a quicker recovery and a better quality of life for our patients.”

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LEGAL

Rehabilitation in Litigation Rehabilitation can be defined as a process “to bring or restore to a normal or optimal state of health, by medical treatment and physical or psychological therapy” (Webster’s Dictionary.)

Whilst we recognise the importance of rehabilitation following an injury, this doesn’t necessarily refer to “hands on” treatment such as physiotherapy and other similar treatment. Often we find that our clients are lacking in motivation and feel unable to engage in the rehabilitation process as their world has been turned upside down and they feel they have lost what they were used to doing in their everyday life. This can affect their mood and they feel overwhelmed by the journey that they are facing.

We have found that in situations like this, sometimes taking small steps has proven to be very successful.

As recreational activities can be an important element of recovery, introducing a new hobby into the rehabilitation process can help our clients to focus on something they enjoy and help them to engage in the process which leads to them being able to focus on small successes rather than larger goals.

Hobbies as a therapeutic intervention Occupational therapy is a key component of the multi-agency approach to the rehabilitation process for the client. Occupational therapy “provides practical support to empower people to facilitate recovery and overcome barriers preventing them from doing the activities (or occupations) that matter to them” (Royal College of Occupational Therapists 2020). Occupations encompass self-care (such as washing, dressing, feeding), leisure (quiet and active

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recreation), and productivity (for example, roles, employment, education). It is a client led, goal focused intervention that works to support clients' return to the occupations that were meaningful and/or purposeful to them prior to their accident or illness. Barriers to goal achievement can be environmental, social, psychological or physical, and a significant part of therapy is to recognise the barriers and support the client to overcome these.

For some, low mood or pain can prevent them from being able to see beyond their current status and therefore being able to identify occupational goals, particularly if this requires some level of compromise or adaptation, Therefore clear goal setting for the client is not always possible in the early stages of the therapy process.

Using occupation (activity) purely as a therapeutic intervention, through the introduction of a new hobby, can be a successful foundation to build a more functional rehabilitation programme.

Therapeutic activity can improve both mood and act as a distraction from pain which, in turn, can have a positive effect on the client’s self-efficacy. Self-efficacy is a person’s belief in their ability to succeed in specific situations or accomplish a task (Bandura 1977).

A person’s sense of self-efficacy can play a major role in how they approach rehabilitation and address functional goals to help return to the occupations that are important to them. As occupational therapy is about identifying meaningful activity, when taking this approach, the choice of hobby is critical to the overall therapy programme. So, working with the client to understand what they have done in the past or exploring a range of new activities is imperative to maximise their engagement. This may mean trialling and abandoning some activities before finding one that works for that person. However, once a meaningful engagement is established this can then create a momentum to talking about addressing other goals that are more functional.

L E GAL

Case study Client A is a lady who experienced a road traffic accident resulting in serious orthopaedic injuries.

Prior to the accident she worked as a home carer and could see no hope to return to this role because of the physical demands. She also was unable to fulfil her role as a wife and parent to her family because of her pain levels. When therapy began with Client A her mood was very low and she spent much of her time in bed as she lacked motivation to get up, and when she did, she was in too much pain. She was unable to articulate any specific goals and just wanted “to get back to where she was before the accident”. Moving her forward was difficult and so the focus was to get her to spend as much time as possible out of bed and provide some structure to her day. We agreed that it would be helpful to have a hobby that she could enjoy and that required her to be out of bed.

We explored several activities that she might enjoy at home and she showed interest in needle felting.

Needle felting is a craft that involves stabbing wool with a needle which creates it into malleable felt.

The felt in turn is then used to create objects. A small budget allowed her to purchase the required materials to make some simple objects for her family as Christmas presents. A goal was set that she would spend two-four hours a day out of bed and she would report back in weekly occupational therapy sessions. As the activity became both meaningful and purposeful to her she quickly built up her tolerance to sit out of bed and subjective reporting showed that her mood was improving and she was able to focus less on her pain, by concentrating on her hobby. The positive feedback she was getting from the recipients of her gifts was also a reinforcement of her abilities.

As a result of her self-efficacy being strengthened, she became much more open to working on further goals that related to her role as a mother and wife, such as preparing meals and taking her children to school. Furthermore, by acknowledging that she was not ready to focus on functional goals helped developed a therapeutic relationship with her by working at her pace.

Client A continued to develop her felting skills and she subsequently set goals around selling some of her items on local social media sites. This then led to us exploring this as a vocational goal when it was established that she could not return full time to the carer role she was previously employed in.

Client A now has a part time job working with the same

employer and supplements this with selling her felting items.

The above case demonstrates the importance of the introduction of a new hobby, purely as a therapeutic intervention, as part of rehabilitation, and what a difference it can make to our clients in helping them to engage with the rehabilitation process.

By breaking down what can be an overwhelming journey into manageable chunks allows our clients to see what they can achieve. It may lead onto more vocational goals, or it may just be used to lift a person’s mood and improve their self efficacy, so they engage with the broader rehabilitation process.

Often, it can be difficult to obtain funding for these types of activities as their therapeutic benefit is not necessarily recognised. When assessing someone, however, in this type of situation it is imperative that we consider all therapeutic solutions and link these to the stages of functional goals so that both the client and other parties have realistic expectations of how this will be achieved.

Co-authored by Elizabeth Whitehead, a senior associate at Irwin Mitchell LLP, leading a team specialising in serious injuries involving significant poly-trauma; and Emma Taylor, an associate occupational therapist at Rehabilitate Therapy Ltd.

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TH ERAPY

How music is helping to change Kile's life Having lived with a brain injury for more than a decade and being reliant on others in so many aspects of his life, Kile Hughes has discovered that the power of music has given him opportunities he could never have imagined.

Through turning to neurological music therapy (NMT), Kile has re-discovered the autonomy and ability to express himself he lost when he was injured aged 18.

Now 30, Kile has thrived during his first 12 sessions of NMT and has made “amazing” progress during that time. Such is his enthusiasm for his new-found passion that he described, communicating via his spellboard, how: “I am looking forward to writing my own music, making my own lyrics to express myself”.

For Clare Maddocks, Kile’s music therapist at Chroma - the UK-based provider of arts therapies - his progress shows how ready he was to express himself.

“Normally with NMT we look at how soon after a brain injury we can start to work with someone, but Kile shows the effect it can have even more than a decade on,” says Clare.

“It really has given him a new lease in some aspects of his life. Having been completely

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reliant on other people for so long, when he comes to NMT, it’s time by himself.

“His carers can leave him and then he has autonomy during the session, and can also choose what he wants to share afterwards.

He can choose to invite them in at the end of the session to share what he has learnt, but that is his choice.

“When expressing yourself verbally is not possible, using music can be very important, as it’s a medium where you don’t use words. There is no pressure to

try and find the words to say and everyone is very much equal.

“It’s a totally private space for Kile to express his thoughts and feelings and that is very valuable for him.”

In a short period of time, Clare has built a strong relationship with Kile, following a referral from Northern Case Management, which recognised the importance NMT could play in Kile’s MDT. “I’m very separate from the rest of his life, I see him once a week and what happens

W he n e x p re ssing yo urse l f ve rba l l y is no t p o s s i bl e, using m usic c a n be ve r y im p o r t a n t , a s i t’s a me d ium w he re yo u d o n’t use w o rd s.

T he re is no p re ssure to t r y a nd f ind t he w o rd s to s ay a nd ever yo ne is ve r y m uc h e q ua l .

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in our session stays there,” says Clare.

“When Kile could see he was being listened to, and that we could engage non-verbally in music, that’s when he really started to open up.

“For many of our clients with brain injury, it’s hard for them to do that, especially when the focus from those around them on a dayto-day basis is on ensuring their immediate needs are met, rather than what’s going on emotionally.

“It can be hard to get to that place, but Kile has made amazing progress very quickly.

He takes the time to communicate and he’s really easy to engage with.

“He’s also a cheeky chappy, who loves to choose the loudest rap music full of

profanities when he’s doing his breathing work, but that’s what he likes, and that helps him to feel at ease and be himself.”

Clare has worked closely with Kile’s case manager Lydia to ensure NMT is supporting the work of his other therapists.

“Working as part of the MDT expedites the improvements we all make individually, we learn a lot from each other. It’s a powerful way to amplify the benefits of independent work collectively,” she says.

“It’s so important to have a strong relationship with a case manager who knows the client so well. Kile may come to me for our session and say his week has been fine, but then I can chat to Lydia and will find that there may have been other challenges in his week.

“Seeing someone in isolation can be tricky, but that’s the importance of working as part of the MDT. As a whole team, we are working in specific roles for Kile, with everything centred around him, and our work is very linked.

“For example, Lydia introduced me to Kile’s speech and language therapist Rachel, who has been working with Kile for a year or two, and it was helpful for us to work together in the assessment phase.

In NMT, we focus on breath work, which can support the vocal work Rachel is doing, so it’s important for those to overlap.

“Kile would love to play the harmonica independently in our sessions so his physiotherapist is helping him to practice whistling. We have already seen some small signs of improvement there.”

While all of Kile’s sessions to date have been in-person, Clare and Chroma have enabled other clients to continue their NMT using virtual means, when circumstances dictated.

“As a profession we’ve had to learn a whole new way of working, but I’ve been surprised but how much richness and depth we’ve been able to keep in the sessions online,” says Clare.

“We’re trained as improvisers and that’s what we’ve had to do. In some ways it has its limitations, in that it’s so important to be able to see the body cues which you may not always see on a screen, but they’ve been very important in keeping the connection going with a client.

“With Kile, we were very fortunate to have all of our sessions face-to-face, with a couple of little breaks when the venue was closed because of lockdown, but for all our clients we’ve been absolutely committed to continuing their therapy and progress, whatever the circumstances.”

See more at www.wearechroma.com

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TECH N OLOGY

Music’s ability to reverse and heal To understand the meaning of rehabilitation,

it is important to imagine how drastic the event of a serious injury, such as a brain hemorrhage, is in someone's life.

Music is more than a therapeutic accessory

This is how John (name changed by editor) was torn from his everyday life.

Until the day he had a brain hemorrhage, John was always very active. Besides a stressful job, he always found time to take care of others.

When in his early 60s, this all changed. Suddenly nothing was as before: The brain hemorrhage left him with left-sided paralysis. He developed language and concentration problems and he almost drifted into a depression. Luckily, he had a loving family, who supported him all the way. Not at least during his six month stay in a rehabilitation clinic.

Knowing that full recovery would be a long and demanding process, he decided to use a new aid called the inmuRELAX. The cushion-shaped sensory stimulation tool provides a healing soundscape and soft vibrations. It helped John greatly throughout his rehabilitation, from the early stages and up till now.

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Several studies have shown that music can heal an injured brain. It may sound unexpected, but it is because music and rhythm are deeply rooted in us.

Just think about how we can show our emotions through music. Areas of the brain, that are involved in music are also active in processing language, auditory perception, attention, memory, executive control and motor control.

The brain has the ability to use music to build new connections within it – also if it has been damaged.

It does this in cooperation with the rest of the body.

Music is not only nice sounds, but also communication between the brain and the body (movements), and communication between the person and the surroundings (for example emotions). Listening to music stimulates the brain positively – music that you perform yourself, and thereby use your own body, involves more parts of the brain and builds more connections.

Interactive music in the healing process From the early stages of his recovery, the healing sounds of the inmu helped John relax and to remove nervous thoughts about his future and family.

One year after he returned home from the clinic, Toni Marquard, the inventor of the inmu, met him and offered to do exercises with him. They used both the inmuRELAX and the inmuDANCE. The inmu’s multisensory stimulation offers the possibility for the user to regulate the stimulation of the senses as well as their level of arousal.

Toni Marquard used the inmu’s vibrations to help John feel his own body again. Then they proceeded with simple exercises: small movements of the fingers, arms and legs (pressing and relaxing, or moving and relaxing). By using the non-paralysed side of the body he re-learned how to use the side affected by the

T E C HNO LO GY

paralysis. In the beginning he had to use his unaffected side to help the weak left half of his body, because his fingers were totally paralysed. But after some time his muscles began to relax and could work independently.

A multi-sensory experience for everyday therapy The key to stimulating the brain is that it has to receive impulses on a daily basis. In rehabilitation, impulse stimulation should happen in gradual steps, progressively adding new movements to the therapy.

It is hard work to get the brain, nervous system and muscles to relearn how to work together. Inside the round, soft sound cushion is advanced software technology, using artificial intelligence (AI), which reacts actively to touch and movement. Through using the inmu, John got an audio-feedback that made him able to listen to his movements.

The inmu’s soundscape motivated him to continue his exercise and improved his mobility day by day. Looking back, he says: “It was mentally a very important experience for me. After a few weeks, my fingers could be stretched out again.” The blood circulation got better after a few days, and he got a better feeling of his whole body and ability to move.

The inmu is manufactured by Danish inmutouch.com ApS, and is surprisingly simple and non-technical to use. The inmu is captivating due to its unique nature, in which music comes into focus as a multi-sensory experience. The innovative everyday companion is

named after its two core elements: "interaction" and "music". In developing the inmu, different perspectives were taken into account: those of the users, the nurses and the relatives. It supports holistic, body-related communication, and promotes perception, communication, and movement skills.

The areas of application are manifold within a wide array of care processes.

How does the inmu work?

The award-winning design was developed to be useable by anyone. There is no dependence on constant supervision or guidance. It is handy and lightweight, and can be used effortlessly throughout everyday life.

Especially in daily routine and therapy the inmu offers great flexibility. There are no confusing switches, apps, or remote controls required. Pleasant vibrations – precisely matched to the music – even enable people with severely impaired hearing to use the inmu.

Depending on the area of application and requirements, the two inmu models, inmuRELAX and inmuDANCE, target specific areas. With its deep, meditative soundscape, inmuRELAX provides relaxation, calming, and wellbeing. While the inmuDANCE promotes movement, serenity, and pleasure through a musical universe inspired by the 60s.

For further information visit www.inmutouch.com/webshop or contact: info@inmutouch.com.

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OPIN ION

Let’s Be Virtually Successful Together The adoption of telerehab during the pandemic has seen seismic changes in how increasing numbers of therapists engage with their clients.

Here, neurophysiotherapist Leanna Luxton, co-founder of Remote Rehab, explains how embracing technology can yield lasting positive change

Nothing has challenged our thinking around the value and effectiveness of virtual rehabilitation as much as this worldwide pandemic.

Virtual therapy, whilst used very effectively for decades in many fields of recovery, hadn’t, until 2020, been widely adopted in neurorehabilitation and so very little insight and data has been collected about its appropriateness and effectiveness with patients recovering from a brain injury or a stroke.

Despite this, therapists around the world are embracing virtual therapy and using it extremely successfully with their clients and family members.

I am moved and inspired when I hear stories about how these pioneering people are using a combination of conversation, therapy, learning, tools, apps and peer-topeer groups to support their patients.

Amongst other things, they are becoming experts in teaching patients and family members to use technology, pre-recording videos for patients, using shorter and more frequent sessions to avoid ‘Zoom fatigue’, blending video and telephone calls with face-to-face, texts and emails, and enabling supporters to become rehab assistants.

For these therapists, virtual therapy is an opportunity to be more creative and ingenious, conquer fears and deep dive into defining what it means to be a physiotherapist in the virtual world.

For others virtual therapy is seen as a challenging experience.

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O PINIO N

Having spent the last few months exploring with therapists how they feel about the virtual first approach we have discovered they tend to fall in to one of three camps: • Around 30 per cent of the therapists we spoke to want to go back to how things were, when “this is all over”.

They are either uncomfortable or unconfident about using virtual tools and remain unconvinced that virtual therapy can be as effective as the traditional hands on approach.

• Around 50 per cent have accepted that virtual therapy, in some form or another, is here to stay, but want support to build up the know how, confidence and self belief to use it fully with their patients.

• Around 20 per cent have completely embraced the virtual world and are enjoying the stretch and challenge of working differently.

Whilst these results aren’t surprising, they are a call to action. We are at a crossroads, we can either continue working the way we always have or join the 20 per cent and become rehab pioneers by suspending beliefs like ‘virtual is not as good as face to face’ and opening our minds to the opportunities and potential that technology provides.

It’s also time to acknowledge that the success of virtual therapy has more to do with therapists’ approach and ability to assess their patients suitability for virtual therapy and develop a session around the patient goals, than it has to do with having the kit and equipment.

By creating Remote Rehab, our online community for hands-on therapists, we have been looking for ways to help therapists decide a patients suitability for telerehab.

Using the REMOTE acronym, we are developing an outcome measure to support therapists to ask themselves questions about: • The level of Risk which is present or can be mitigated • The level of Expertise of both the therapist and their patient • The Mindset in relation to remote rehabilitation of the therapist and patient • The Opportunity - what is possible within the environment and with available tech?

• What Type of remote rehabilitation can be offered?

• How can we measure Effectiveness? What goals and outcome measures can we use?

When viewed positively, this pandemic has been an invitation for us all to think differently about how we deliver physiotherapy for neurorehabilitation, overcome practical technology challenges, challenge long-held beliefs around face-to-face versus virtual sessions, and look at how virtual working practices can increase capacity, effectiveness and productivity.

We know anecdotally that virtual therapy works for neurorehabilitation; now we need to understand the factors that enable its success and identify when and how to use it effectively and explore how to integrate it into our everyday practice.

Once we have found ways to embed virtual therapy into our everyday practice, I know we will have a huge number of opportunities to promote self management as a result of working with our patients more collaboratively.

We need to be courageous and embrace the opportunities online discussion spaces and communities such as Remote Rehab provide us with; including the chance to share our experiences, fears, vulnerabilities and challenges and most of all ask and answer the difficult questions that will ensure we can work collaboratively to shape the future of neurorehabilitation.

Let's be virtually successful together.

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CASE MANAGEMENT

Remote working in case management can be a safe and effective means of interacting with clients, new research has found.

Three research projects commissioned and funded by CMSUK analysed how effective remote working and use of telerehabilitation could be in case management.

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The projects assessed the barriers and challenges of remote working, the safety and quality of telerehabilitation, and its effectiveness.

They have demonstrated how effective it can be, supported by training for case managers where needed.

Case managers across the UK have been forced to resort to remote working during the COVID-19 pandemic, meaning many have had to adapt and learn as they go, while also supporting their clients in adopting technology as a means of communication.

CMSUK commissioned the research projects as a result of the lack of existing guidance available to case managers.

Each year, the organisation funds a research project, but due to the unprecedented circumstances of 2020, decided to commission three smaller projects to assess the full spectrum of telerehabilitation.

“This has been a very important project and we have shown that remote working can work very well for case managers,” says Dr Devdeep Ahuja, director of CMSUK. “Previously, it was widely thought that delivering

CA S E M ANAG E M E NT

rehab intervention remotely was only suitable for minor injuries, and that it didn’t work for complex cases, but we are showing that it can.

"We look at key aspects of where it works and where it doesn’t, and there are many ways in which remote working can be just as effective as in-person.

“It is important that proper training is given if necessary to ensure it is safe to deliver case management remotely, but providing that is done and proper procedures are followed, then we have found it can be very effective.”

CMSUK’s commitment to researching and sharing best practice with its membership and wider case management community was at the root of its review of remote working, says Dr Ahuja.

“Our focus is on promoting research to create evidence-based practice and when COVID-19 came, and we had to quickly adapt to online remote working, it became clear that there wasn’t enough guidance out there,” says Dr Ahuja, who leads the CMSUK research sub committee.

“That is why we wanted to take action and create some research. Remote working will probably be in existence for some time to come, so it was important we acted on this, that is what we do at CMSUK. “By creating practical strategies, we can then help deliver them.

"By identifying what steps we need to take, we can then help to ensure these are put in place,

and support our case managers with the practical steps and caveats they need to consider.”

The annual grant made by CMSUK to fund a research project was given to three applicants instead of one to aid the creation of a comprehensive review in a shorter timescale.

“By splitting the grant three ways, we could look at multiple aspects of remote working and collect the findings in a relatively short period of time, so we could share this research for the benefit of our case managers,” adds Dr Ahuja.

“Given the circumstances and the need to s upport case managers with research and best practice evidence going forward, it was important we did this.

"We hope our projects will be of great benefit to case managers in their ongoing use of remote working.”

For further findings from the research projects, visit www.cmsuk.org

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TH ERAPY

Hydrotherapy pool re-opens at Askham Rehab This quarter we are excited that we are finally able to re-open our hydrotherapy pool at Askham Rehab. should be specifically tailored for an individual to maximise function, our purpose-built pool is used as a part of our patients’ rehabilitation programmes, concentrating on a range of physical, physiological and psychosocial neurological deficits. We pride ourselves on providing hydrotherapy to every patient or outpatient that indicates the need for it, with sessions being incorporated into their weekly timetable for therapy and activities.

Taking the first steps Before beginning their rehabilitation journey with us, patients are invited to attend an initial assessment, where our aqua therapist asks them questions about their condition. Mutually agreed SMART (Specific, Measurable, Attainable, Relevant, and Time-Bound) goals are then set and the patient would be prescribed to a treatment programme specific to their needs.

Early in 2020 due to the COVID-19 pandemic, it was closed in an effort to keep both patients and staff safe. We are pleased to share that we have worked hard to ensure that we can operate in a COVID-secure fashion and the pool will now be available to support all our patients in meeting their rehabilitation goals. It is opening both for our patients staying on site as well as for outpatient usage.

At Askham Rehab, we use hydrotherapy, or aquatic therapy as it is more commonly

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referred to, to treat a range of neurological conditions including acquired and traumatic brain injuries, spinal cord injuries, and multi-trauma injuries. We have found it to be an accelerator in many ways for some of our patients, who have been able to achieve incredible things while in the pool, and they can then take this learning with them onto land.

In accordance with the Aquatic Therapy Association of Chartered Physiotherapists, which states the use of hydrotherapy

What we offer Our heated pool, which is maintained at the optimum temperature of 35.5°C, with an ambient air temperature of 31°C, has ladder access and a tracking hoist to allow access to a wide range of patients and outpatient users. The facilities are completely user-friendly, with level access changing rooms and facilities that are suitable for all, including wheelchair users. There are also the extended options of different lighting and a massage pump

T HE RAPY

We have f o u nd i t to b e an ac c e l e r a to r in m any way s f o r s o me o f o u r p ati ents, who have b e e n a bl e to achi eve i ncredibl e t hi ng s w hil e i n the p o ol , and they c an t he n t a ke thi s l e ar ni ng wi th t he m o nto l a nd

bearing in various positions.

As well as providing physical benefits, hydrotherapy also offers positive wellbeing through enhanced relaxation of the water’s hypnotic effects. Due to its temperature being thermo-neutral, the pool has a positive effect on reducing pain, allowing people to be more independent and enjoy the freedom it may provide.

to allow for true relaxation.

The pool is used for single user occupancy with two trained staff members, and sessions are completely designed around the individual and their needs. Users often comment that their pain disappears and that they can move more freely and feel relaxed.

Our hydrotherapy offering is further enhanced by one of our therapists who is currently progressing through to become an accredited aqua therapist, following the completion of her foundation training programme.

The benefits of hydrotherapy Utilising the properties of water can provide pain relief and the reduction of muscle spasm. The warmth of the water helps

suppress the sympathetic nervous system and stimulates the skin sensory nerve endings. There is also a reduced effect of gravity due to the support of buoyancy in the water, allowing for ease of movement, joint range and flexibility.

Improved strength and endurance is also achieved in water as it helps to work muscles in different planes and in ways that often can’t be replicated on dry land.

Such properties include the viscosity, weight and density of the water, and force of buoyancy. Water also produces resistance through negative pressure from turbulence and a drag effect.

Users of our pool also experience enhanced balance, coordination and posture while being unencumbered, with the support of buoyancy and weight-

What our patients think Our hydrotherapy offering has played a key role in helping our patients reach their rehabilitation goals, and has proved to be a real asset in treating neurological conditions.

Users of our pool have claimed it has helped to give them their life and independence back. You can find out about their success stories with us and more about our pool at askhamrehab.com/hydrotherapy Hydrotherapy is just one part of the Askham Rehab multidisciplinary offering that also specialises in the neurological fields of psychology, physiotherapy, occupational therapy, and speech and language therapy.

You can find out more at askhamrehab.com/disciplines

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IF WE’D STOPPED AND THOUGHT ABOUT THE SCALE OF THE TASK, WE’D HAVE FALLEN OVER… BUT WE DID IT

The Sue Ryder Neurological Care Centre Lancashire opened, after years in the planning, during the height of the COVID-19 pandemic. Centre director Terry Mears and neuro rehab lead Hannah Halliwell share their experience of such a difficult, yet rewarding, time

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INS IG HT

Opening a new specialist neurological care and rehab centre is a seismic task in any climate - but to do so at the height of the COVID-19 pandemic is probably a feat few would attempt.

But having been badly wanted and needed in its area for over 15 years, and after an 18-month construction and development project, the Sue Ryder Neurological Care Centre Lancashire opened its doors to patients in April 2020.

The purpose-built centre, which has 40 bedrooms and four apartments, offers level 2 post-acute rehab support in a state-of-the-art environment alongside palliative and end-of-life care - designed to the needs of its residential and day clients.

It is a first for the Sue Ryder group in terms of the breadth of its facilities and holistic rehab offering, and has been welcomed as a beacon on a UK-wide basis, both in terms of the quality of the centre and its offering, as well as the local strategic partnerships it has established.

And while the plan, revised in light of the pandemic, was to delay its opening to patients to ensure the 180-strong team had time to settle in to their new roles and adapt to stringent safety procedures, demand for its specialist facilities and

services meant they had to take its first clients rather earlier.

“We found out on April 23 that we would need to take our first rehab patients the very next week. We took seven people initially, which rose to 14 shortly afterwards, some of whom had very complex needs,” reflects Terry Mears, centre director at Sue Ryder Neurological Care Centre Lancashire.

“National lockdown came three weeks before we were due to move into our new building. We had daily anxiety about whether this would happen and had to completely redesign our project plan. Moving was scaled back from seven days into two, and recruitment was speeded up and interviews took place by video.

“I think if we’d have stopped and thought about what we were doing, and really considered the scale of the task, we’d have fallen over. But we did it, and it was the most amazing team effort. Absolutely everyone in our team played their role in getting us in and geared up to take clients.”

Hannah Halliwell, neuro rehab therapy service lead at the centre, says: “We hadn’t realised the speed at which we’d need to mobilise. We came here with a robust project plan and anticipated taking our first

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clients in maybe May or more probably June.

This was a new centre and most of our team were new to Sue Ryder, so there was a huge amount to get right in a very short time.

“However, our role in taking patients was very important in supporting our partnership strategy through providing valuable bed capacity at the height of the pandemic. We played our role very well.”

While many centres were closing to new patients during the period, several of the initial intake at Sue Ryder have already been discharged, having achieved strong outcomes. And from opening until this point, the centre has remained completely COVID-19 free.

“We really have worked around the clock to keep everyone safe,” says Terry.

“My biggest fear from the very beginning was having COVID in our centre, particularly with so many staff and being in a Tier 3 area, as well as admitting from an acute hospital, but we have not had one confirmed or even suspected case of COVID.

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“We have done absolutely everything we possibly can to get it right, but the work will continue and the pressure we put on ourselves to ensure we maintain this COVID safe environment will continue as long as it is needed. There’s an added intensity now not to let our guard down.”

While family visits have not been permitted from the outset, in line with national guidance, the centre has differed from many others by allowing visiting for its end-of-life patients.

“We have always been committed to doing the right thing and we felt to deny a family that opportunity to say goodbye to their loved ones posed a far greater risk to that family, in terms of the impact it would have, than COVID,” says Terry.

“We have had to take measured risks, including in being able to deliver discharges, but we have looked at these situations individually and did what we felt was in the best interests of our clients and their families.

“We are very hopeful visiting may become more commonplace soon. We have been earmarked to

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I t hink La nc a shire has the potenti al to b e a centre of e xc e lle nc e in t he UK and even on a European b asi s t hrou gh wha t we have created here

be at the front of the queue for vaccinations and are also getting lateral flow testing kits, so they will help us to finally be able to welcome families into our centre. We know how desperate they are to hug their loved ones, we’re desperate for them to do that too, and we can’t wait to show what we have here.”

Hannah adds: “While it was a challenging time, admitting our first patients was also a special and memorable time. I’ll always remember those first few patients and their stories.

“One of them was a young man who had suffered a sub arachnoid haemorrhage on the day the country went into lockdown. He came to us having to be hoisted and with significant speech and language and cognitive problems, but when he left four months later, he was moving independently and had huge life-changing outcomes.

“In those initial few weeks when he couldn’t move his arms to hold his phone, to video call his wife and children, we held it for him. We supported him with absolutely everything we could, in every way we could.

“We are so proud to have returned a husband and family to his wife and children, having achieved such amazing outcomes during one of the hardest times imaginable for healthcare.”

Going forward, in the short term, the centre hopes to welcome more patients once it is safe to raise capacity from its current 14, as well as opening its apartments, which are to enable patients to experience independent living pre-discharge.

Longer term, it hopes to become an example to others as to what is possible.

“We are so proud of what we have here,” says Terry.

“Our strapline is that we will change things for a generation, and that’s what this centre will do.

“I think Lancashire has the potential to be a centre of excellence in the UK and even on a European basis through what we have created here through the strategic partnerships that have been created and our community infrastructure. It has all come together into something which can inspire others.

“We have lit the torch paper and I believe this is the beginning for us to take forward.”

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Wellness and Recovery Action Planning (WRAP) in Neurobehavioural Rehabilitation

By Dr Danielle Desperles-Hughes; Consultant Clinical Psychologist and Clinical Lead Avalon Centre - Elysium Healthcare

The use of psychological therapy approaches in patients with Acquired Brain Injury (ABI) for mental health, behavioural issues or rehabilitation needs can often pose a clinical challenge. Cognitive impairments, executive function, initiation and motivation can create barriers to patients being able to retain and independently apply the skills they have been taught during groups and individual sessions into daily practical situations.

Developed by Mary Copeland in the USA in 1997, Wellness Recovery Action Plans (WRAP) can address this issue by capturing the rich content of discussions from groups and individual sessions to develop these into a live plan that can be carried forward for individuals and their friends and family to support them. Developed collaboratively with the patient, key concepts and ideas therapy sessions can be pre populated, so WRAP sessions have a solid starting base which can be built upon during individual therapy. As the content for each patients WRAP plan will have been sourced, as a starting point, from the patient’s assessments and engagement in their group therapy programme it is more meaningful to them than generic suggestions that may be posed during WRAP sessions when initiation of ideas in therapy may be difficult.

Whilst WRAP planning is often used largely in forensic services as part of relapse prevention and for a variety of mental health issues and substance misuse, as a tool to support individuals following acquired brain

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injury it has a high level of utility. Based on five recovery concepts Hope; Personal Responsibility; Education; Self Advocacy and Support, these concepts closely relate to the principles of neurobehavioural rehabilitation to maximise an individual’s independence and functional skills to live as well and as independently as possible post injury.

Although WRAP is simple, it is comprehensive in that it aims to identify easy safe wellness tools that individuals can use daily and weekly to maintain their wellbeing, to identify triggers and to recognise early warning signs and to develop action plans for these times. It also supports people to develop a crisis and post crisis management plan, identify their wishes for the future in relation to their care and treatment and to identify their supporters who they can call to help with various issues from getting around, to finances to future care and treatment .

Within neurobehavioural rehabilitation (NbR) services as we aim to maximise independence, functional skills and wellbeing so individuals can return to live in the community. We can therefore incorporate the core elements of an individual’s rehabilitation needs and goals into a WRAP. This can include positive behaviour support and behaviour management strategies, functional skills guidelines and cognitive support techniques to create a unique plan for the individual that can be routinely be reviewed and adapted and as long as it is required.

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Based o n f i ve re c ove r y c o nc e p t s Hop e; Pe r s o na l R e s p o ns i b il it y; Ed u cati o n; S e l f A dvo c a c y a nd S up p o r t , these c o nc e p ts c lo s el y re l a t e to the p rinc i pl e s o f ne u ro b e hav io ur a l rehabili ta ti o n to m a xi m i s e a n i nd i vid u a l ’s i nde p e nde nc e a nd f u ncti o na l s ki l l s to l i ve a s w e l l a nd a s i nd ep ende ntl y a s p o s s i bl e p o st inj ur y.

As all specific and relevant individualised detail is located in WRAP, this therefore removes the burden from patients to remember and retain the skills taught in sessions, before they are able to apply these in a difficult situation or crisis. Instead the cognitive task becomes simpler in that they merely need to follow the steps which were mapped out through their period of therapy; moving them easily into a process of skills practise, where they will have the different steps they need to follow for different key situations.

As a WRAP can also be given to family members

and carers, with the patient’s permission, there is an added benefit of WRAP to educate and upskill those supporting the person with an ABI to recognise triggers and warning signs and to empower them to provide targeted support or adaptive strategies based on WRAP. In this, you improve longer term outcomes and ensure that patients remain successful in their recovery journey, adapting to challenges that they are presented with.

To illustrate the benefits of WRAP planning, this approach is highlighted through a case study, where WRAP planning was used very successfully with a patient at the Avalon Centre, in order to support their preparation for discharge. With a history of premorbid alcohol misuse as a means of coping with anxiety and stressors and a traumatic brain injury (TBI) acquired whilst under the influence of alcohol, the WRAP plan provided the platform for this patient to undertake the necessary psychological interventions whilst reducing the cognitive load placed on them.

Neuropsychological assessments completed at admission assessment revealed a profile of relative strengths in language and attention domains but impairments were evident in the immediate and delayed memory domains and the visuospatial constructional domains as assessed by the Repeatable Battery of Neurocognitive Status (RBANS).

Deficits were also evident in executive functioning skills, which includes planning and problem solving,

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at the impaired range of functioning as assessed by the Behavioural Assessment of the Dysexecutive Syndrome (BADS). Corresponding symptoms of neurobehavioural disability (NbD), assessed by the St Andrews Swansea Neurobehavioural Outcomes Scale (SASNOS), highlighted on admission that deficits were present in interpersonal behaviour on proxy ratings completed by staff, with scores falling in the more severely impaired range. There was also a large discrepancy in the patient's self-rated scores where they scored themself within the normal / above normal range in each domain, highlighting issues with their level of insight compared to staff observations of their performance.

From clinical observations during initial psychology sessions, they were found to struggle to recall previous discussions which meant that their ability to build on these ideas in subsequent sessions was compromised.

In this case, the use of a WRAP plan allowed the patient to use more concrete methods of learning to support memory and improve their level of insight in a collaborative approach by avoiding cognitive constraints. By writing down the key points from each session in order to support them to build on their awareness of their issues and limitations and identify more adaptive coping strategies, they were able to develop a more specific understanding of their triggers and risk factors each week.

Through these WRAP planning sessions the patient was able to work through a psychological model of anxiety to help build awareness and insight into their formulation and difficulties to explore predisposing and precipitating factors that led up to the TBI. Using the Avalon WRAP workbook the patient was able to explore the strategies and

structure they required to stay well, risk factors and triggers that led to alcohol misuse and early warning signs of becoming unwell and crisis.

Somewhat differently from more traditional approaches to WRAP planning, this also incorporated the impact of the patients NBD on day to day functioning to include adaptive and compensatory strategies along with more traditional coping methods. As the patient’s family was also involved in this process, they were able to provide an additional perspective to the patient on their behaviour, triggers and warning signs they had noticed and strategies that they had used at home to support them. Included in the plan were also copies of the profile of cognitive impairments and cognitive functioning guidelines; cognitive communication support guidelines developed in conjunction with SLT and a copy of the collaboratively developed PBS plan, all for the patient and family to use and share with community providers and support services as appropriate.

The efficacy of this approach, where traditional neurobehavioural rehabilitation approaches are used in conjunction with WRAP planning, is demonstrated in Figure 1 in an assessment of the patient’s symptoms of NBD using the SASNOS. On admission, where deficits in interpersonal behaviour and cognition were evident with scores falling in the more severely impaired range, by discharge this had improved significantly as scores fell within the normal range across all domains.

In t he p rocess of up -ski lli ng ca rers a nd suppor t w orkers to provi de a more speci a li sed level of ca re, N bR i s cont i nued long a ft er di scha rge to provi de ongoi ng reha bi li t a t i on, ensuri ng t he success a nd longevi t y of out comes a nd progress.

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INS IG HT

Figure 1: SASNOS results proxy ratings and weighted severity on admission compared with discharge.

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SASNOS - Total Ratings and Primary Domains 21/07/2020 Score

70

21/07/2020 Weighted Score

60

01/12/2020 Score

T-Score

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01/12/2020 Weighted Score

40 30 20 10 0

Interpersonal Behaviour +2 SD 70 - 80

Cognition

+1 SD 60 - 70

Inhibition

Aggression

Normal Range 40 - 60

When comparing weighted / dependency scores on the SASNOS (scores which are recalibrated to identify the profile of impairments if all staff support and structure was removed; Alderman, Williams and Wood 2018) from admission to discharge, there is also a significant improvement in the level of support the patient required to maintain current levels of functioning.

This was most evident in the domains of interpersonal behaviour and communication where little or no support was required at the point of discharge compared to admission where support was required across all domains with the exception of inhibition.

Improvements were also reported across the additional outcome measures used within the service.

Ratings on the Health Of the Nation Outcome ScaleAcquired Brain Injury (HONOS-ABI) had improved from 13 on admission to 9 at the point of discharge (lower scores equate to improved performance) and on the Functional Independence Measure and Functional Assessment Measure (FIM FAM) where functional skills had also improved from 185 on admission to 198 at the point of discharge (higher ratings indicate improved functional skills and independence).

As it was evident from the discharge SASNOS ratings, that the patient required ongoing support in the

Communication

-1 SD 30-40

Total

-2 SD 20 - 30

-3 SD 0 - 20

domains of cognition and aggression, the WRAP plan in this case was able to support the transition back home for the patient back into the community, by providing a framework and understanding to the family of how to support the patient in order to transfer the structure and routine developed in the hospital back in to the home environment.

In many cases where there is a paucity of local specialised ABI services and families have limited available contact with specialist community services to provide the support and advice required, they can find themselves in challenging situations, pressured to manage and deliver care outside of their knowledge and experience. As the WRAP plan combines the process of relapse prevention with learning theory and NbR, this process can therefore bridge the knowledge and experience gap of family members and local support services by providing them with a personalised specialist workbook of management plans and strategies. In the process of up-skilling carers and support workers to provide a more specialised level of care, NbR is continued long after discharge to provide ongoing rehabilitation, ensuring the success and longevity of outcomes and progress.

For more info visit www.elysiumhealthcare.co.uk.

References : Copeland, M (1997) – Resources related to WRAP plans on: https://mentalhealthrecovery.com Nick Alderman, Claire Williams & Rodger Ll. Wood (2018) When normal scores don’t equate to independence: Recalibrating ratings of neurobehavioural disability from the ‘St Andrew’s – Swansea Neurobehavioural Outcome Scale’ to reflect context-dependent support, Brain Injury, 32:2, 218-229.

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CONC USSI ON

Protecting players for future generations

With the links between concussion in sport and lasting neurological consequences becoming more clear, concerns are rightly being raised about the safety of athletes.

But through the invention of a device which can determine head impacts in real time, could this be the revolution in player safety which is so badly needed?

Deborah Johnson speaks to the creators of the Protecht mouthguard

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C O NC USS IO N

The connection between sports like rugby and football and head injuries causing later-life neurological problems is becoming increasingly evidenced. Globallyloved sports are, therefore, facing some huge challenges and a pivotal period of adjustment ahead.

In sports played by global icons who are adored by millions, the emphasis is increasingly shifting onto what may await them further down the line; after a career during which they will undoubtedly sustain regular head impacts through heading the ball, colliding with other players or falling to the ground.

Currently, a number of celebrated rugby players are involved in a landmark legal action over claims the sport has left them with lasting brain damage. And recently, former Leeds Rhinos captain Stevie Ward retired from the sport aged only 27, due to the lasting effects of

concussion, which he said have left him unable to exercise at all without aggravating his symptoms.

Football also came under further scrutiny last year, following a groundbreaking research project by Dr Willie Stewart, consultant neuropathologist at the Queen Elizabeth University Hospital, Glasgow, which revealed that footballers were three-and-a-half times more likely to die of neuro-degenerative disease than age-matched members of the general population.

As former England striker Chris Sutton recently assessed: “Premier League clubs nowadays have members of staff who monitor everything from how many sprints you made in a match to how much sleep you got last night. They measure the lot. Yet what is not measured is potentially the most important thing — what is happening to your head on a day-to-day basis.

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CONC USSI ON

I find that remarkable.”

Change clearly needs to happen, both to safeguard those currently playing sports, as well as the future generations. Failure to act could, say experts, impact on the willingness of parents to allow their children to participate, adversely affecting the future of such mainstream sports from grassroots level upwards.

While only a seismic change in how football and rugby are played can prevent any form of head injuries happening - and with trials for concussion substitutes in football just getting underway now in the Premier League - the ability to gain greater insight into what is happening to players on the pitch in real time is a crucial intervention.

And that is where a new invention comes in, adding a high-tech twist to old-school sports equipment. The result is a product which could help to revolutionise

From t he s id e line s, f or t he f ir st ti me i t can b e s e e n in gre a t d e t a il what i s g oi ng o n wit h pl aye rs, a nd t he imp a cts they are t ak i ng . T he inf or ma t ion f rom t hei r mouth g u a rd s i s pa sse d on in re a l t ime and d ec o d e d t he re a nd t he n. safety in contact sport.

Following extensive testing and development, and the creation of market-leading software, Swansea-based startup SWA has devised Protecht, a mouth guard which contains the technology to convey information to pitch side computers in real time, telling them instantly the level of impact a player has sustained.

Through being able to measure the force and impact of every head impact - collecting 102 milliseconds of information around the head trauma, of which three milliseconds will be the actual impact - a club’s medical team can be fully informed and make evidencebased decisions over whether someone needs to be examined, replaced or protected.

Rugby has been keen to act, with Protecht in use by a host of Premiership clubs. Boxers and MMA fighters have also begun to use the high-tech mouth guard.

Football has not been as quick to adopt its use, with “a number of conversations” underway with

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Premier League teams, supported by Chris Sutton’s encouragement for clubs to trial the invention.

And with its creator SWA putting the cost of using Protecht at £20 per player per week, price is not the sticking point that its so often is in tech innovation.

“This is a brand new area for football, where mouth guards are not commonly used, but we are starting to come onto their radar and we hope that’s where it’s going,” says Chris Turner, chief executive of SWA. “In rugby, which is where we started, we’ve made great strides there. We hear from the clubs who use Protecht that it’s working very well. We heard from one club who did a two-day training cycle, one light impact and one heavy. Through being able to see the data we collect, they realised they were actually both the same.

“Studies are showing that when players hit each other there is very little impact, the greater impact comes when they hit the floor. That kind of insight is hugely valuable.

“It could be that one player has a series of impacts in the first half of a match, and handles those impacts very well, and their neck strength can cope with that. But into the second half, that neck strength and endurance starts to evaporate, and the impact of these impacts is doubled. We’ve never had the real time data to tell us that before.

“From the sidelines, for the first time it can be seen in great detail what is going on with players, and the impacts they are taking. The information from their mouth guards is passed on in real time and decoded there and then.”

Professor Mike Loosemore, a leading figure in sport and exercise medicine and concussion expert, who has advised SWA on the creation of their mouth guard, believes the adoption of Protecht can be vital in attributing where head injuries come from.

“It can help us understand what needs to be changed, particularly in football. A lot of sports are starting to adopt concussion protocols, but football has not really been at the forefront of the head injury and concussion debate until more recently,” he says.

“Although heading the football means the head impacts with the ball, can we really attribute heading the football to head injuries? We have found in other sports that head injuries have not been caused not by the impact itself, but by the subsequent collision from falling onto the ground.

“Maybe it’s that we just don’t know, and to take a decision like banning heading in football would change

C O NC USS IO N

the sport hugely. And if you stop heading, which will make players’ necks weaker, this may lead to an increase in head injuries from falling down. This mouth guard will have a huge impact in finding out exactly where the head injury has come from.”

Its positive impact in safeguarding players is already being seen by sports professionals: “It allows us to build a pool of data on how much contact they tend to take in a week, per training session and in a game,” says Harlequins’ head of medical Mike Lancaster.

But the impact of the long-term absence from sport many professionals experienced as a result of COVID-19, could mean they need to be afforded even greater protection.

“Many players are returning to contact after an absence due to COVID, or perhaps an injury, and that can have a big impact. We can collect an enormous amount of data to show how they are conditioned after an absence, how they are reacting and dealing with impact, and this can be of huge importance when raising the intensity,” says Chris, who previously held executive roles at Unilever and SAP before starting SWA. “It can be very useful in helping a team manager to manage players. A healthy player is a good player, and returning to sport after COVID does pose risks. Athletes, during a period away can become deconditioned,

and are more susceptible to injuries, including head injuries,” agrees Mike. “This mouth guard can alert you to that. The technology behind this is very advanced, and we can see in real time, as it happens, the need to protect athletes, particularly when returning to contact after an absence.”

With adoption at the highest levels of English rugby, clearly clubs see Protecht as a key factor in ensuring the safety of their players. But is this the total solution to the problem of the consequences of head injuries in sport?

“Through being able to relay this real time information through these 102 millisecond waves around a head impact, we are helping to increase understanding around where head injuries come from and are putting this information directly into the hands of club doctors and their teams,” says Chris. “This will help more people to play sports more safely. We want to help protect future generations. We have spent a lot of time and money developing the mouth guard, testing it, ensuring it is reliable and accurate, and we are very pleased with its impact and the feedback we are receiving from those who are using it. The technology as it is will work in football, and we hope that will be next for us. We were very encouraged by the comments of Chris Sutton, and look forward to continuing our conversations with Premier League sides.”

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TH ERAPY

Pioneering hippotherapy programme delivers life-changing outcomes A pioneering physiotherapy service for children and young people which engages them in rehab through horse riding has marked its 10th anniversary.

The Children’s Therapeutic Riding Service was the first of its kind in Scotland, and remains the largest hippotherapy service in the country. Hippotherapy is a specialist horseback form of physiotherapy, which can deliver life-changing consequences to children with disabilities, including brain injuries.

The service, delivered free of charge, attracts young people from across Scotland to its base in Muirfield and has helped hundreds of families during its time in operation.

As well as live animals, there is also a mechanical horse called Oreo, which

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T HE RAPY

responds to hand and leg movements like a real horse and is linked to a screen to give riders a technology-led virtual experience.

The use of Oreo has been particularly important in enabling sessions to continue during the COVID-19 pandemic.

The Children’s Therapeutic Riding Service was founded by Susan Law, from Muirfield Riding Therapy (MRT) and NHS Lothian physiotherapist Heather Falconer, marking a groundbreaking partnership between the two organisations to deliver hippotherapy.

“I knew instinctively, from my years spent volunteering at MRT, that riding was of huge benefit but through meeting Heather and seeing her work, I could see how, through this physiotherapy service, we could help to change the lives of young people and their families,” Susan tells NR Times.

“If you have a child with a disability, it can be very isolating. Now, to see the difference engaging with our horses makes really gives a warm, fuzzy feeling. It’s very rewarding.

“Through our very specialist, physiotherapyled service, we can accommodate rides for children with even severe disabilities.

“By securing National Lottery funding 10 years ago, we have been able to develop our hippotherapy service, which remains the largest in Scotland. We look forward to continuing our work into the future.”

Co-founder Heather explains the concept of their hippotherapy offering.

“Children are referred when their NHS Lothian physiotherapist believes hippotherapy to be the most effective form of physiotherapy for them,” she says.

“The children present with a huge array of challenges, including difficulties with mobility, balance, muscle tone, strength, coordination, body awareness and symmetry.

Hippotherapy provides a means to address all of these issues and more.

“Hippotherapy uses the movement, warmth

If you have a chi l d w i th a di sab i l i ty, i t can be ve r y i sol ati ng . Now, to see the di fference e nga gi ng w i th our horses m akes real l y g i ves a wa r m, fuzzy feel i ng . and rhythm of the horse as a therapy tool. As a horse walks, every step challenges its rider’s balance. This activates and strengthens the muscles of the trunk and pelvis.

“A three-dimensional movement is transferred to the rider’s pelvis which mirrors the movement of a normal rhythmic human walking pattern, and gives experience of a normal walking pattern. The warmth of the horse and a gentle rolling gait can relax tight muscles, while a more choppy movement can increase low muscle tone.

“It is great fun, both for me and for the children I work with. For them it doesn’t feel like therapy, but delivers consistently amazing results.

“It is also much easier to connect with a child and for them to trust me using the ponies or Oreo as an intermediary. It is a three-way

therapeutic relationship, four-way if you count the volunteer key workers too.”

Charlie Kay, aged 13, has been using the service throughout its time in operation.

“The best part about the riding service is that Charlie sees it as more of a hobby than a therapy session. He has seen a real knock-on effect in mobility and his walking is so much better,” explains Melanie, Charlie’s mum.

“As the riding engages his core he is sitting up better and straighter. Not only is it great for his physical health, but Charlie also enjoys the social aspect of speaking to all the volunteers and staff.

“Not only are the sessions helpful to Charlie, I find I get great advice joining with other parents in the viewing gallery. I am very grateful to have the opportunity for us both to use this incredible service.”

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CH ARITY

MS Trust invests significantly to build services further

Dedicated support for people living with Multiple Sclerosis (MS) is set to be increased through the addition of more specialist nurses and champions into the NHS and major investment in the development of an advice line.

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The MS Trust is the only charity which provides additional specialist MS nurses into the NHS, and while it was forced to pause the initiative at the outbreak of the COVID-19 pandemic, it is now set to resume its NHS Specialist Nurse Programme with plans to create five additional roles.

The nurses are recruited and trained by the charity, in conjunction with local NHS partners, and are directed into areas with the greatest pressure on MS resources.

The seven existing roles are majority funded by the MS Trust for the first 15 months, with the NHS then funding the positions once the positive impact of their roles is proven.

The charity is also set to further develop its pioneering MS Champions project, which has seen six people

C HA RIT Y

T h ro ug h ou r int e r ve nt ion to hel p re c r ui t , t r a in, f u nd a nd mentor a ne w nu r se , t ha t c a n help ease pres sure signif ic a nt ly

working within the NHS to provide signposting and guidance to some of the 40,000 people nationally who have advanced MS. Early findings from the pilot scheme suggest each Champion delivers a saving of £150,000 per year to the NHS through relieving pressure on GP and A&E visits, and the MS Trust is targeting the addition of a further three roles.

Significant investment has also been made in the Trust’s enquiry line, which saw a surge in enquiries during the pandemic amidst resources being cut back elsewhere.

Supported by National Lottery funding, the charity has been able to significantly upgrade its telephone system to develop the capacity of its service.

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CH ARITY

Throu gh a p p rop ri ate suppor t, si g nposti ng and gu id a nc e , we a re savi ng the NHS hundreds of t hou sa nd s of p ounds, b ut are al so cruci al l y maki ng a hu ge d if fe re nce to peopl e’s l i ves

“Last year was a bit like walking through treacle.

Now we’re out of the treacle and are building and future proofing what we do,” says David Martin, CEO of The MS Trust.

The charity, which helps more than 10,000 people with MS every year, is a key partner of the NHS through its funding of specialist MS nurses and champions.

“Our nurse programme has become well established. We have provided seven so far and we are seeing the difference they can make. MS nurses may ordinarily work with around 300 people, whether that is through face-to-face, telephone support or drug monitoring, but in some areas that will be over 1,000,” says David.

“Through our intervention to help recruit, train, fund and mentor a new nurse, that can help ease pressure significantly. It is my personal hope that we will add five more nurses, which would make a huge difference to the lives of so many people living with MS.” The Trust’s MS Champions project is the only scheme of its kind and is also set to be extended after early indications of its success.

“Through appropriate support, signposting and

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guidance, we are saving the NHS hundreds of thousands of pounds, but are also crucially making a huge difference to people’s lives. This is why I work for The MS Trust, so we can create projects which make an impact like this,” says David.

And alongside supplying resources directly to the NHS, The MS Trust’s enquiry line is another significant asset, which has seen recent investment in its development. Demand for the service grew hugely during the pandemic, meaning the charity had to adapt quickly.

“We’re not a massive charity, we have a team of 30, but back in February 2020 we decided people were really going to need us via our enquiry line, so we put our resources into that,” says David.

“We have received more calls over the past year than ever before, April was our busiest month ever. Our phone system was very 20th Century, so it wasn’t a case of flicking a switch and resorting to home working. Our team worked extremely hard to adapt.

“But through being able to secure National Lottery funding, we now have a whole new service. Our users won’t notice a difference, but for us internally, it’s geared up capacity and helped our team greatly. We are set up now for whatever the future holds.”

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INTERVIE W

The brain injury survivor whose fundraising is changing lives What began as a schoolboy dream to raise a few hundred pounds to thank the medics who had supported him throughout his childhood has become a muchloved fundraising organisation which has generated over £245,000 for good causes.

Andrew Baker discusses his pride at being able to help fellow young hospital patients and brain injury survivors through his Play2Give organisation.

Having lived with a brain injury since birth, spending much of his younger years in and out of hospitals for ongoing treatment and undergoing major brain surgery at the age of 12, Andrew Baker decided he wanted to give something back.

“The medical teams were amazing, they were so brilliant, and I decided I just wanted to say thank you. It was 19 years ago in January that I was in year 10 at St Birinus School in Didcot and so I thought how nice it would be to raise some money [with the school] as a way to give back,” he says.

“I set a target of £500 and the response from my school was brilliant, we first raised £1,000. That was the start of my fundraising journey.”

Since that time, Andrew has gone on to raise over £245,000 for an array of charities, through the creation of Play2Give, which takes its name from what was initially devised to be an one-off fundraising football tournament he organised that has spiralled into a dedicated non-profit organisation.

Among the many beneficiaries of Andrew’s fundraising, Oxford Children’s Hospital and brain injury charity Headway Oxfordshire are causes particularly close to his heart.

And as well as Play2Give, there is also its accompanying festive arm, “Sleigh2Give”, which donates gifts to children who are spending their Christmas in Oxford

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Children’s Hospital and other children and families less fortunate. Over £120,000 worth of presents has been given out at Christmas since 2015.

Andrew’s efforts have attracted national praise, with accolades including recently being awarded an MBE, the British Citizen Award Medal of Honour, and having a Points of Light award bestowed upon him by Prime Minister Boris Johnson.

“It’s all quite unbelievable sometimes and it’s crazy how it has grown, but the best thing for me is that I am helping other people, using my motivation and experience of my own adversity to make change. Through this fundraising, we are helping to change, transform and save lives, which is what Play2Give is all about and to see the positive impact on people’s lives is what this is for and that along with my own experience

continually drives me on,” says Andrew, 32, from Didcot.

“I am helping people like me. It hasn’t been easy for me living life daily with a brain injury and the everyday challenges it brings, but with support you can get through it. I use Headway in Oxford twice a week and spent lots of my childhood in hospital. It was like a second home for so much of my young years so I know how much this kind of help and the all-important fundraising is needed.”

His initial fundraising as a 14-year-old coincided with the development of the Oxford Children’s Hospital, which did not exist when Andrew was undergoing his treatment. Since that time, he has raised tens of thousands of pounds to help bring the idea of the hospital to reality. The Oxford Children's Hospital opened its doors in 2007, as old as Play2Give in years.

“I had to go between John Radcliffe Hospital

Throu g h thi s fundrai si ng , w e are hel pi ng to c ha nge, transform and save l i ves, w hi ch i s wha t P l ay 2Gi ve i s al l ab out

INT E RVIE W

Find out more about Play2Give's work or to donate, play2give.org.uk

and the former Radcliffe Infirmary because there was no children’s hospital then. It was really needed for children like me, so the fact my fundraising in part has helped to create Oxford Children’s Hospital is amazing, really - plus it has amazing pull-out beds next to the child's beds, which is something my mum never got to experience during my stays,” he says.

“We raised £40,000 specifically to go towards a single patient room on the teenage ward in the hospital, which is named after Play2Give.

Being able to fund a room is a long-term impact which will help so many teenagers being cared for in a special environment for years to come. That was a very proud moment in March 2017 cutting the ribbon to officially commemorate the unveiling of the room.

“Before COVID, we used to go in and meet the teenagers who were in the sponsored Play2Give Room and their family, which was brilliant. We would talk to them about Play2Give and our story, and they realised we understood what they were going through.

We look forward to when we can do that again going round the wards and into our room meeting the children and families.”

Alongside supporting the creation of the hospital itself, Andrew has also raised significant sums to help build the new nearby Ronald McDonald House, which provides

accommodation for families whose child is in hospital. The new 62-bed facility opened in May, replacing the former 17-bed facility that was the top floor of the children's hospital.

“When I was in hospital, my mum had to sleep next to my bed uncomfortable on a makeshift camp bed in an ageing children's ward, so the Ronald McDonald House is another specialist facility I can really realise the value of,” he says.

“It costs £25 a night for a family to stay in the Ronald McDonald House accommodation, and we have raised around £10,000 now, so that is an enormous amount of nights that parents and siblings can be closer to their loved ones.”

Andrew is also a keen supporter of Headway Oxfordshire, as well as a regular service user.

Through his fundraising, he has financed equipment, specifically six specialist neurophysiotherapy chairs, and helped to keep the centre and its services running.

“Going to the Headway activity and rehabilitation centre since 2012 and meeting people has helped me so much, it has brought out my confidence and increased my skills and cognitive functioning,” he says.

“When I first started going, I was quiet, shy and anxious Andy, but that’s not the case now. I spend two days each week at the centre with fellow brain injury survivors and while we’re all unique with our brain injuries,

we share experiences and can understand what we are all going through with no fear and with reassurance.

“I actually use the physio chairs our fundraising efforts in 2017 helped to fund, so I am benefiting from this fantastic custombuilt machinery along with so many people.”

Although the pandemic sadly prevented the team's Christmas toy drops to the Oxford Children’s Hospital in 2020, the donations in gifts continued in a different way.

“We absolutely love going onto the wards. The aim of what we do through our Sleigh2Give arm is to bring a bit of cheer joy and raise some smiles.

“But the donations are still continuing this year so we can help families out a bit at what is a difficult time when your child is in hospital and more so over Christmas and we also branch it out to enable other children and families less fortunate and the vulnerable to also receive a dose of Elf Andy generosity with the gift of presents at Christmas time.”

While Andrew admits fundraising during the pandemic has been tough, Play2Give will have raised in excess of at least £10,000 by the end of 2020, with Andrew being as committed as ever to continuing his work going forward, with further plans for growth of his organisation and more exciting events.

“People have really taken Play2Give to their hearts, we have a lot of love and admiration for what we do, the reaction from people locally is brilliant.

“This past year has been difficult but we have still seen so much generosity from people, it is always heartwarming and even more this year.

"I just want them to know that their donations are going towards helping those who will see so much benefit from it.

Together we are transforming lives, and that is such a fantastic thing.”

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INTERVIE W

Confront your fears and do what you love or you never will Only days after returning from an adventure of a lifetime, Louise Hulbert’s world was torn apart when she had a stroke. Here, the author of From Burgos to Bedroom Floor and Back Again tells NR Times how she hopes to inspire other survivors with her story

A dream written down with a date next to it becomes a goal, A goal broken down into steps becomes a Plan, A Plan backed up by action, becomes REALITY (ANON) "I really like this and have found it very helpful when working out how to reach my dreams."

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Three years into retirement, and about to celebrate a landmark birthday, Louise Hulbert was making the most of her 60th year.

A lover of walking, she had just completed several stages of El Camino, a long-distance pilgrimage walk from France to Santiago de Compostela in northern Spain, crossing the Pyrenees on the way, covering up to 15 miles a day.

“We walked from St-Jean-Pied-de-Port to Burgos over three weeks, it was a great adventure, the latest of many, with many more set to come,” recalls Louise.

But shortly after returning to her Essex home, the adventure turned into a nightmare when Louise, a former PE teacher and lover of activity, woke up one morning on her bedroom floor, with no memory of how she had got there.

She had no feeling in her left arm or leg, and couldn’t get up from where she found herself. She lay there for several hours until she was found and rushed to hospital.

“It was absolutely terrifying. It was so unexpected and there was no symptoms of this beforehand, no warning. It never entered my head that someone as fit and healthy as me, who had been walking 15 miles a day only a few days earlier, could be having a stroke,” she says.

INT E RVIE W

Nelson Mandela once said

‘I never lose, I win or I learn.’

But that was the reality. Unbeknown to Louise, she had a blood clot which blocked the middle cerebral artery and cut off the oxygen supply to the right side of her brain.

A four month stay in hospital followed, which, says Louise, “felt like a lifetime”.

“I’ve always been so active and I just wanted to be up and about, back home and living my life.

But that wasn’t something I could just go back to, sadly,” she says.

After being discharged, initially in a wheelchair, Louise had daily physio and occupational therapy for ten weeks, which enabled her to walk again with the aid of a stick.

“I think probably the worst bit of it all was that initial phase when I came home and I couldn’t get up and walk, I couldn’t get around my own house, I couldn’t even go to the loo on my own,” says Louise.

“To lose your sense of autonomy is absolutely dreadful.”

And while Louise pushed herself to be able to walk again, the psychological benefits were much more difficult to overcome.

“Looking back now, I realise how much I struggled,” she says.

“I totally lost all of my confidence and self esteem. I felt like a useless lump and a complete burden, a shadow of the woman I had been prior to the stroke.

“I lost the ability to make any decision for myself about anything. It could be that someone would phone and ask if I wanted to go out shopping, and I would defer to my partner for a decision.”

Walking was something Louise was determined to return to, and having been up and about with the aid of a stick within her first 10 weeks of being at home, she continued to challenge herself.

“I wanted to get back into walking outdoors. For

"This made me realise that not reaching your goals first time is no reason to beat yourself up, because you can learn as much if not more from failure as you can from success if you fail, just reflect on what you could have done differently and try again! This has kept me going on many occasions when I didn’t reach my goal first time."

me that would be a huge achievement and a big step forward as I love it so much,” she says.

“I live next to a country park and challenged myself to go a bit further every day. Over time I built up to being able to walk for half an hour, and by the end of the first lockdown I was walking for two hours each day.”

Setting goals was crucial for Louise in her recovery, enabling her to increase the targets as she progressed.

“I’ve inherited a very strong work ethic from my family and I don’t give up easily, I’m continuing to push what I can do. I’ve also had constant support and encouragement from my partner, which has been hugely important,” she says.

“I think you have to confront your fears and find a way of doing the things you love - or else you won’t.

“About five years after my stroke, I completed a 5k charity walk in Spain, which was the furthest

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I had walked since before it happened. I trained hard for it, like you would in any sport, and that was a big milestone for me.

“I now want to go back to El Camino and do another section of it by the time I’m 70, which is another challenge I have set for myself.

“I’m also driving on my own again. For a long time I wouldn’t have had the confidence to do that, but I took a dog soft toy with me which I found a great comfort. It helped me to regain some of my independence, which has been another big step.”

Now six years on from her stroke, Louise’s confidence is a “work in progress” but is building all the time through her volunteering work on the stroke rehab ward at King George Hospital in Essex, as well as with Stroke Rehab Dogs.

“It has helped me enormously. Working with fellow stroke survivors has been really important, and I also feel like I’m making a contribution, giving something back,” she says.

And from her huge strides forward in her physical and psychological recovery, the idea for Louise’s book was born. By sharing insights online with her Stroke Rehab Dogs group during lockdown, the charity’s director suggested she should make them into a book.

“I’ve never had any literary ambitions, so had never thought about writing a book at all, but it did seem to make sense the more I thought about it,” she says.

Winston Churchill said,

'Winning is not final.

Failure is not Fatal. It’s the willingness to keep trying that matters.’

"I really believe that even if you fail at something, the willingness to keep trying will eventually get you there. It’s very important to not be afraid to fail because that can stop us even trying."

“It has been a very cathartic experience,” she says.

“Some days I’d finish writing on a real high, whereas others I would feel quite depressed.

"But it really helped me to process and understand what had happened, particularly psychologically. But the main motivation has always been that I want to help other people who find themselves in the situation I did. I want to help them find the inspiration to keep going, no matter how hard it seems.

“There are bad times, but it need not always be that way. By setting goals for your ambitions, and finding the strength to help yourself achieve them, you can reclaim your life.”

From Burgos to Bedroom Floor and Back Again is now available from major high street and online retailers, and is raising vital funds for three causes close to Louise’s heart - Canine Partners, Stroke Rehab Dogs and ARNI.

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MEDICOTECH

INSIGH T

A charity which supports people who have lost their senses of smell and taste has seen global demand for its services jump 70-fold amidst the pandemic, with the symptoms being two of the key signs of COVID-19.

Fifth Sense rising to the challenge Fifth Sense has worked nationally since its creation in 2012 to offer support and signposting to those directly affected by smell and taste loss. It has supported hundreds of people during that time, as well as educating society on the vital role the senses play in our lives and how keenly their loss is felt.

However, over the past few months, the charity has been deluged with enquiries from around the world after smell and taste loss became commonplace through contracting COVID-19, and they were confirmed as being among the main symptoms of the virus.

Fifth Sense quickly reacted to the need by launching an array of online resources for people. This included taking its in-person local groups online and creating new virtual groups and advice forums to help engage with the global community of people who have lost their smell and taste.

Previously it was operated by founder Duncan Boak and volunteers - backed by the expertise of leading medical figures including Professor Carl Philpott, director of research and medical Affairs at Fifth Sense. But the charity took on its first member of staff, director of development and operations Nina Bleasdale, only weeks before the pandemic hit the UK. It has since added marketing officer Daniel Scott in June to help it keep pace with surging demand and help continue to develop new ways to engage with those who need it.

“We have punched above our weight from day one with our delivery model, where we bring on board people who want to be part of what we do and we use this experience and professional skills to make a difference,” says Duncan, who lost his sense of smell through a brain injury.

“From the outset, we have worked with Carl to make sure the

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INS IG HT

information we are providing is of the highest quality and is credible. Our credibility is now widely recognised.

“That has enabled us to create what we have and has allowed us to accommodate the volume of demand we have seen.

"Ordinarily, we would get 1,000, maybe 1,500, visitors to our website a day - that has gone up to 70,000.”

Nina says: “Our website has been a resource for so many people in terms of giving information and signposting and being there when people need us.

“And as well as providing them with the resources they need, the opportunities to have contact with other people who are also experiencing the loss of smell are hugely important. I don’t think people can realise what the reality of that is like in everyday life.

“Even one ENT consultant we work with told us they didn’t truly understand what it was like until they experienced it themselves, even though they had treated patients with it for years. But that’s why we are so important to so many people, because we do understand.”

Duncan continues: “When I lost my sense of smell in 2005,

I spent the next six-and-a-half years thinking I was the only person on the planet with this, so I know what people are going through.

“There’s the classic line ‘there’s nothing that can be done’ and while that may be true from a clinical perspective, the value of coming into contact people and sharing experiences is more valuable than I can describe. In that way, there is so much that can be done.

“I wish what we have created had been there for me in the early days, but it’s great to know we are supporting so many others who probably feel similarly alone until they come to us.”

Fifth Sense is now operating a number of online forums to enable it to bring people together.

“We’ve had people from around the world, many of whom have lost their taste and smell through COVID, but equally others who have lived with this for years but have never done anything about it, or more probably because there was nowhere for them to turn 20 or 30 years ago,” says Nina.

“It’s great they have found the confidence to come to us and end the isolation and disconnection they’ve experienced, and we’ll continue to make conversations and connections happen.”

However, going forward, while it will continue with its online offering to unite its global community, it is committed to continuing its presence on local levels.

Duncan says: “Face to face engagement will continue to have immense power and value.

"We have a number of local hubs and there is something really important about that.

"Going forward, more people will be working at home, they’ll be travelling less which will positively impact climate change, and people will spend more time in their local communities as a result.

“I think these strong links and affinities many people now have with their local communities will mean our local hubs will be more important than ever. Local people supporting each other has been vital during the pandemic and will continue to be so.”

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UK AB IF NEWS

UKABIF roundup Here, we reflect on some of the recent developments from UKABIF standard questions to ensure all prisoners in England will be screened for acquired brain injury sustained through domestic abuse from April 2021.

The initiatives were made possible through the evidence base developed by The Disabilities Trust in female offenders highlighting the link between domestic abuse and brain injury and showing that nearly two-thirds of women (64%) in the prison studied had a history of traumatic brain injury.

NHS Reform Cross Government Task Force Michael Gove, Chancellor of the Duchy of Lancaster and Minister for the Cabinet Office, delivered on his word to initiate a meeting of Government departments to discuss acquired brain injury.

On January 25, representatives from departments including the Cabinet Office, the Department of Health and Social Care, the Ministry of Justice, the Home Office, the Department of Work and Pensions, the Department for Education and the Department of Culture, Media and Sport met to discuss the subject. The departments will provide an update for the Cabinet Office providing headline progress, and next steps will then be clarified.

Domestic Abuse Protection Orders to highlight brain injury New statutory guidance for police and independent domestic violence and abuse advisors will now include information about Acquired Brain Injury, following the update to Domestic Abuse Protection Orders.

The Government will also introduce new

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The Government’s NHS White Paper, Integration and Innovation: working together to improve health and social care for all, has been published.

Key proposals include putting ICSs on a statutory footing, to replace CCGs and introducing a new ‘duty to collaborate’ for NHS bodies, with legislation enabling NHS providers to form joint committees.

The proposals also including taking stronger direction-making powers for the

Secretary of State over NHS England, but not local NHS bodies, and and enabling NHS England to delegate or transfer the commissioning of certain specialised services to ICSs singly or jointly, or for NHS England to jointly commission these services with ICSs. NHS England has also published five legislative recommendations for ICSs. Whilst there isn’t a consultation on the proposals, there are a range of other ways UKABIF will look to engage with the White Paper when the legislative process begins.

UKABIF Summit The annual UKABIF summit is to be held on Monday, November 9.

It is hoped that the event will take place at The Royal Society of Medicine in London, although alternative arrangements are being made in the event COVID continues to prevent large meetings.

The programme will include experts speaking on our lobbying work as well as updates on clinical practice and research.

TECH N OLOGY

‘Game-changing’ app revolutionises customer experience for people with disabilities The creator of the world’s first smartphone operated pedestrian crossing has now devised the means to revolutionise the customer service experience for people with disabilities through the launch of a new app.

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T E C HNO LO GY

Gavin Neate has created WelcoMe, which enables people to contact businesses in advance of their visits to alert them to their visit and any special requirements they may have.

The app also provides businesses with information about the person’s disability or condition, enabling them to be fully prepared to welcome them and deliver the best possible customer service.

WelcoMe has attracted the support of major bodies including the Scottish Government, Diageo, and is becoming increasingly widely used by people across the UK. It has just been adopted by its first medical practice, Charter Medical Centre in Hove.

Its client base is particularly strong in its native Scotland, though its expansion into England is continually gaining pace.

WelcoMe is the latest game-changing invention from multi award-winning entrepreneur Gavin Neate, though his business Neatebox, after his creation of the disability-friendly pedestrian crossing in 2011, which was adopted in a number of Scottish towns the following year.

This later became a standalone business, Button, which enables users to press a range of buttons remotely, such as those to open automated doors.

“With Button, we are enabling people to press buttons without actually having to press them, through using their smartphones,” says Gavin, whose inventions are inspired by his 18 years as a mobility instructor with Guide Dogs for the Blind.

“The need to this was particularly apparent with pedestrian crossings, where people in power chairs, for example, often couldn’t get near enough to be able to press it. Once we had created that, we realised we could press buttons for anything.

“And through that, the realisation that your phone was interacting with the building gave me the idea that if we can do that, why don’t we interact with the people in the building so they can know you are coming in.”

I n o ne fel l swoop , t his hel ps s t af f prov i d e t he best ser vic e, a nd al s o hel p s t he p er son to g et rid o f t he anxiet y l evel s t hey p ro b abl y h ad prev i o usl y in g oing to p re mis e s

Through the creation of WelcoMe, what were previously significant causes of anxiety for people with disabilities can be removed, says Gavin.

“I saw so many times during my time as a mobility instructor that when you went into a cafe or a shop, people would speak to me rather than the person with the guide dog. But through WelcoMe, we are putting that person at the heart of the interaction.

“In one fell swoop, this helps staff to provide the best service, and also helps the person to get rid of the anxiety levels they probably had previously in going to premises,” he says.

“Through the creation of their profile on the app, the staff member will know what they look like, and they’ll know when they are going to arrive and if there is anything they need.

“If they have a guide dog, they may like some water, or if they use a wheelchair, they may need a ramp. They can also alert the venue to if they are exempt from wearing a mask. This can all be done in advance of the person’s arrival, without having to explain anything publicly, meaning they can enjoy their experience in a way they may not have done previously.”

WelcoMe has won a number of awards in recognition of its innovation, and the positive impact it is having on society.

“I didn’t want to be an inventor, it just happened, and we are now disrupting the norm to create a better place and better experience for people who really need it,” says Gavin.

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INSIGH T

Be empowered to take control of your recovery Two new Recovery Facilitation Programmes (RFP) designed to empower people to take greater control of their recovery and enable them to better manage their conditions have been launched.

Energise Health’s six-week programmes, Energise Recovery and Energise Recovery 4Life, equip both recently-diagnosed people and those living with long-term conditions with the knowledge and skills they need to make beneficial and lasting changes.

Energise Recovery - for individuals at an early stage of recovery - and Energise Recovery 4Life - for those at least six months into their recovery journey - are online programmes that offer live teaching sessions on a range of topics, alongside practical activities and guided coursework.

Energise Health has been created by nurse pain specialist Dr Dee Burrows and occupational therapist Victoria Collins, who brought together years of expertise to develop these programmes, which they have seen, from their own experiences, are badly needed.

Pa r t i c i pa nts c a n d eve lop t he ir ow n s c r i pt . We are e mp owe r ing t hem to fi nd o ut w ha t work s f or t he m Victoria says: “The concept came from a really challenging case we were both working on, where we realised that had this particular client been given access to something like this at an early stage in their recovery, it would have prevented so many secondary complications."

The programmes - devised over 18 months,

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in consultation with experts in the field - aim to educate participants in how to tackle and improve issues around pain, stress, depression, poor sleep and lack of confidence in daily activity. Participants are shown how to adopt a bespoke range of strategies that they can incorporate into their daily lives to help them manage.

Although the business launched during the COVID-19 pandemic, unlike many initiatives that were taken online out of necessity, Energise Recovery and Energise Recovery 4Life were intentionally developed as online programmes.

“We designed this to be online as we wanted a facilitated group-based programme,” says Dee. “And when you are supporting people who are living with injuries or conditions, their recovery is best facilitated if they have the energy to spend on it, rather than exhausting themselves through travel.

It is also a more environmentally friendly model, which is important to both of us.

“We can have people from across the country, whether Edinburgh, Leeds, or Cornwall coming together in a way that will benefit them individually and collectively. We look forward to sharing it with more people.”

Energise Recovery and Energise Recovery 4Life introduce participants to a range of strategies from mindfulness to Tai Chi, belly breathing to sleep management, diet to exercise and connecting with others, all backed by a comprehensive handbook and activity diary.

Victoria says: “We are enabling people to try a range of different strategies - all of which have been

INS IG HT

carefully chosen for this purpose. [We] determine which ones they want to pursue and learn how to integrate them into their daily routine.

“We enable them to develop a personalised toolkit, with strategies to manage their conditions.

Participants can develop their own script. We are empowering them to find out what works for them.”

In the six-month pilot of both programmes, engagement levels were 100 per cent in terms of both session attendance and self-reporting, with ongoing success seen in terms of individual outcomes. On average, participants started their programme with 3.75 self-management strategies, rising to 26.25 at programme completion.

“What we do is based on the principles of hope, engagement, support and self-management, and the desire to change is something we look for when accepting participants,” says Dee. Victoria says: “The programmes are a foundation.

We provide high quality resources and links for

people to learn more and develop if they wish, and, through our teaching, explain key components and how they might be applied. It is bitesize and digestible.

“We are enabling people to enhance their ability to self-manage. By adopting the strategies into their lives, we have already seen how this can give individuals hope for the future and be of great benefit to their mental, social and physical wellbeing.”

Dee adds: “While the early stage Energise Recovery Programme will always give the best possible chance of recovery, Energise Recovery 4Life can be equally beneficial for those with long-term conditions, including, for instance, long COVID. “We have noticed that some participants do better with their clinical interventions when they have completed the programme as a foundation and have a toolkit of strategies in place. It can also, however, work well in tandem with, or after clinical interventions.”

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MY BABY WAS BRAIN DAMAGED

BY JAUNDICE - HELP US TO STOP THIS HAPPENING While Vasili Kalisperas was born a healthy baby, his undetected jaundice left him with cerebral palsy and needing round-the-clock care. Here, his mother Elena shares her story and calls for action on kernicterus to ensure such an ordeal does not happen to more families

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INT E RVIE W

Peopl e d o n’t re a l i s e t he ri s k s around j a u nd i c e no t b e i ng d iagno s e d a nd t ha t ’s a t t he root o f t he p ro bl e m. G re a t e r aware ne s s a nd s c ree n i ng can s ave b a b i e s f ro m a l i fe o f pain a nd t ra u m a l i ke m y s o n goes t hro u g h eve r y d ay

When Vasili was born, he was a perfect, healthy baby.

I didn’t know I was expecting a boy and we were absolutely thrilled to know we had a son as well as our older daughter.

I remember gazing at him in my arms, completely on cloud nine, thinking how absolutely perfect he was, looking forward to a making a lifetime of happy memories together.

He was so strong and determined even in the hours after he was born, lifting his head up and showing such determination. I called him my ‘Little Spartan’ as he clearly had such strength inside him.

Little did I know how much that strength would be needed, as almost overnight our perfect situation became every parent’s worst nightmare.

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I went home the same day as having Vasili, because I had already had a child - although that was five years previously - and I’d had a healthy pregnancy, so was deemed at low risk of anything going wrong.

Vasili was checked by a paediatrician in hospital, who found nothing of concern, so we went home.

A midwife then came to visit me at home, and again, nothing seemed wrong.

Little did we know that Vasili had jaundice a condition which affects so many newborn babies and is easily treatable, but when left untreated, can have the most terrible of consequences. We first realised something was wrong with our son.

Early signs in hindsight we’re high pitch cry, not feeding well, lethargic, jaundice - but alarm bells didn’t ring until his urine came out orange, but that’s when it was too late.

In hindsight, he had a high pitched cry, wasn’t feeding well and was quite lethargic, which raised concerns - but when his urine was orange, that’s when we realised something was wrong. As a parent, you know when something isn’t right.

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We went back to hospital and it became panic stations. It was a mad rush to save his life. We waited five long hours for bloods to come from Birmingham Children’s Hospital for his double exchange transfusion and didn’t know at that point if he was going to survive.

From being my perfect, happy, healthy baby, Vasili was now fighting for his life. He spent three weeks in intensive care, and thankfully won his battle for survival. But it soon became apparent he would be battling every day for the rest of his life.

We found out Vasili had kernicterus, a result of untreated jaundice caused by excess bilirubin, which can damage the brain or central nervous system.

It’s a little known condition, I had never heard of it, so I didn’t appreciate how serious it was until I saw my son connected to all those machines. I had never seen so many wires coming out of a baby.

Only days after being born a healthy baby, my son, my Little Spartan, was left with brain damage. He is profoundly deaf with little eyesight, and has Cerebral Palsy which means he cannot walk or sit unaided. He needs 24 hour care, and probably will do for the rest of his life.

The devastation this has had on our family is something I can’t really put into words. Vasili has lost any independent future he could have hoped for, and our lives as his family have all completely changed.

We share our home with a team of carers and our days are a sea of medical appointments.

My relationship with my husband has come under huge strain, and we have both suffered from PTSD as a result of what we’ve been through. We see Vasili in so much pain, communicating with us only by crying when something is wrong, and it’s so very hard to cope with.

This is not how we imagined our life would be, and I have grieved for the fact that our son was such a healthy baby, but through the lack of diagnosis of what could have been a minor ailment, he is now left completely dependent.

Kernicterus is something which should not have happened to Vasili, and we want to do all we can to ensure it does not happen to any other baby and any other family. It is completely preventable and we must take the steps in our NHS to make sure it is just that.

In the US, it is treated as a ‘never event’ due to the fact it is something that simply should not happen.

Screening in newborns there is routine, at which

INT E RVIE W

From bei ng my per fec t , ha p py, he a l thy baby, Vas i li w as no w fig ht ing f or hi s li fe. point jaundice can be picked up and a simple round of phototherapy can resolve the situation.

But by contrast, here, we have nowhere near the standard of awareness or education around jaundice.

Amidst the masses of information you receive as an expectant mum, jaundice is perhaps one line in there, it’s not something you know much about or treat as serious in any way.

Through our experiences, we’ve found that even many midwives don’t know about kernicterus.

This must change, or else the mistakes that were made in our case will happen again and continue to do so. Worcestershire Acute NHS Trust admitted negligence in our case, but we need change to happen on a national basis.

We know of similar situations which have happened

since Vasili was born, and that is the heart-breaking thing. This is so avoidable.

We are calling for routine screening of babies to be introduced into the UK, and have started a petition to make this happen. It is so important to the health of all babies that we understand their levels of bilirubin at the earliest time, and particularly before they are discharged from hospital.

Greater education and awareness is also needed of jaundice. New mothers have little idea what they are looking for and need to be made more aware. We have heard from several mums who were so grateful for us being so vocal, or else they wouldn’t have asked the questions they did.

People don’t realise the risks around jaundice not being diagnosed and that’s at the root of the problem.

Greater awareness and screening can save babies from a life of pain and trauma like my son goes through every day.

We need change to happen. This cannot wait. What happened to Vasili was preventable and we must do all we can to try and prevent it from happening again.

Visit the family’s website mylittlespartan.co.uk for a link to their petition.

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CASE MANAGEMENT

A new body is being created which will lead the professionalisation of case management.

The Institute of Registered Case Managers (IRCM) will set a host of stringent technical and professional standards which case managers will need to adhere to.

This will be backed by the development of a register, accredited by the Professional Standards Association (PSA), with case managers having to fulfil a series of criteria to be able to join.

The creation of the IRCM is a highly significant move within case management, and aims to bring more transparency and clarity into the profession, giving greater confidence and protection to clients and fellow professionals alike.

Having been in the planning stages for several years, the IRCM - which has been developed and supported jointly by BABICM, CMSUK and the VRA - is set to launch in the new year. It is currently being presented to industry stakeholders, with a series of awareness-raising initiatives planned for case managers in the coming months.

Angela Kerr, chair of BABICM, has been appointed chair of the IRCM, working alongside fellow directors Karen Burgin, chair of CMSUK, and VRA chair Deborah Edwards.

“This has been a long time in the planning, and there has been a huge amount of work going on behind the scenes, but this will be a very important step forward for case management,” says Angela.

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“It is about professionalising what we do and setting the standards we should all be adhering to.

We see the IRCM as being central to the future of case management.”

The creation of the IRCM will ensure that those working in case management are subject to designated standards. As well as client-facing and technical work, the body will also create protocols around business practices, including finance and governance.

Professional development and education opportunities will also be promoted to those on the register, to ensure a continuing focus on, and ability to deliver, the highest practical and ethical standards.

Technical standards for the process of accreditation with the PSA are currently being finalised, which are based on internationally-recognised research, and will underpinned by an education strategy.

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

“By creating the IRCM, and with it a professional register with accreditation from the PSA, we are bringing in this increased level of regulation that we want to see. This will be hugely valuable for case management and for increased levels of confidence and trust in what we do.”

Through bringing together the three main professional bodies within case management, who have been working on the project since 2012, the IRCM will help to ensure continued collaboration from all sides of the community.

“It’s great we have been able to work collectively to achieve this. We’ll be working together and with our memberships to enable case managers to work towards accreditation, which is so important in giving that reassurance and giving protection to our clients,” says Angela.

Membership has been extended to those working in the NHS, with the IRCM also being open to case managers working in other sectors, including the medicolegal and insurance industry.

Full details about the IRCM can be found at www.togetherstronger.org.uk

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