Neuro Rehab Times issue 27

NEURO REHAB TIMES

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NR TIMES

Martin's Mission ‘I’m doing this for the greater good, to be a catalyst for change’

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WELCOME

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Conquering mountains Like many of us, I have watched from afar and marvelled at the Martin's Mountain challenge. The huge accomplishment by Martin Hibbert, after the unimaginable trauma of the Manchester Arena bomb which left him paralysed; the commitment he showed to raising funds and vital awareness of the ability and potential of people with spinal cord injury; the impact it had on people across the world who were inspired to conquer their own mountains.

Send your stories and opinions to Deborah Johnson, Editor deborah@aspectpublishing.co.uk For advertising enquiries contact Gary Wilding, Head of Sales gary@aspectpublishing.co.uk Also on the NR Times team: Andrew Mernin, Founder / MD andrew@aspectpublishing.co.uk Chloe Hayward, Sales Sorina Mihaila, Designer Andrew Nealen, Contributor

So it was a particular delight to speak with Martin for this issue. A passionate advocate of the rights of people with spinal cord injury, he is committed to improving society and making it more accessible - I'd urge everyone to read his words and support him wherever possible in his ambitions of creating a world which is much more open to people living with disabilities.

While Martin really has climbed a mountain, as his campaign rightly acknowledged, we all have our own mountains to climb, on whatever a scale that may be. In rehab, survivors often face huge mountains, as Martin has done since 2017, but with the right support, they can conquer the often seemingly impossible.

In this issue, we again look at the support that is improving lives and helping people to tackle their own mountains. Head for Change is a really inspirational example of tackling a mountain, by overcoming the hugely distressing obstacles faced by families of former professional footballers in accessing support from the PFA by helping to fund residential care. For a small charity to take the lead on such an issue is admirable and we are glad to hear from the two relatives we spoke to that they now, at last, feel heard and acknowledged.

In addition to everything in this issue, our website is updated several times each day with new content, which we hope you find relevant and useful to your work and professional or personal interests. Please visit us at www.nrtimes.co.uk

NR Times is produced by Aspect Publishing Ltd. Registered company in England and Wales (number 10109188 / registered office: 11 Lansdowne Terrace, Newcastle upon Tyne, NE3 1HN)

And also, please do get in touch with any feedback or story ideas.

We are always delighted to hear from you and very much welcome new ideas, so please do drop us a line.

Deborah Johnson deborah@aspectpublishing.co.uk

Collaborative content Sponsored features are created in partnership with our sector partners whose support ensures we can continue serving our readership.

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CONTENTS

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COVER STORY

Martin Hibbert tells NR Times about why he’s leading the charge for change 12 NEWS IRCM PROGRESS - organisation in a ‘brilliant place’ for the future 13 BACK TO BASICS NKMT targets saving lives and

Contents

improving health 1 4 V I D E O S TA R S Charity looks to increase post-stroke exercise content 1 5 P AT I E N T- C E N T R E D C A R E Richardson Care us what it means 16 MISSING LINK how Circle Rehabilitation is filling

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24 MED NEG AND SCI living with the reality of spinal cord injury 28 REBUILDING LIVES the power of neuro rehab

36 SETTLEMENT SECURED life-changing support after brain injury 3 8 M S M AT T E R S working and living with the condition

the gap in rehab

30 SOCIAL PRESCRIBING its positive impact on mental

21 TECH IN PR ACTICE how rehabtech fits into rehab

32 FUNDING RESEARCH

22 MEET THE BOSS MD of Circle Case Management shares his journey

34 DJ POWER the role of spinning the decks in rehab

health

helping to change the future

40 UPPING THE ANTE new range of intensive packages launches 42 CAUDA EQUINA SYNDROME how the condition is far from 'just a bad back'

CONTENTS

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46 N I G H T W O R K E R S how and why support must be given

70 MUSIC AND REHAB what therapeutic interventions work best?

5 0 E A R LY I N T E R V E N T I O N securing a timely settlement

72 TRAUMA SUPPORT the importance of trauma-informed practice

52 GAMING IN REHAB how LusioMATE is redefining the market 54 COMMUNITY REHAB The Children's Trust redefines its service 58 ADHD AND ABI the need for deeper understanding 62 MAXIMISING POTENTIAL how Woodlands is helping clients achieve goals 66 GET A GRIP tech revolutionsing hand function 68 COMMUNIT Y ENGAGEMENT its vital role in care and rehab

74 S M A R T A S S E S T M E N T S how they apply to PDOC patients 7 6 S U S TA I N A B L E D I S C H A R G E S ensuring community re-integration after hospital 78 FORGOTTEN NO MORE how a charity is helping where the PFA has refused 8 4 U N D E R S TA N D I N G B R A I N I N J U R Y types, causes and rehabilitation strategies 8 6 C O M M U N I C AT I O N I S E V E R Y T H I N G how the team is making speech and language support diverse and accessible for all

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C O V E R S T O RY

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C O V E R S T O RY

Martin Hibbert

‘I'M DOING THIS FOR THE GREATER GOOD, TO BE A CATALYST FOR CHANGE’ From the unimaginable horror of being part of the Manchester Arena bombing, when he was left paralysed after sustaining a severed spinal cord, Martin Hibbert is using his traumatic experience to change the reality for fellow spinal cord injured people.

Here, he tells NR Times of his own experience of the lack of support and provision for people with spinal cord injury, his determination to change the everyday challenges and disadvantage they face, and why he wants to start a revolution around attitudes and perception of disability in the UK

“I’d love to be able to go out for a meal or to a hotel with my wife without it being a military operation to make sure they have a ramp, they have disabled toilets.

“I don't want to have to give 24 hours’ notice to get on a train, I don’t want to be left on a train or a plane because assistance hasn’t come.

“And the dream is probably to live in a country where disabled people aren’t treated like third class citizens.”

Here, in a few sentences, Martin Hibbert sums up the everyday experiences of people with paralysis, for whom support is often in short supply and the challenges they face in living their lives are all too apparent.

A stark reminder of the reality for people with disability, in a country where the Equality Act was introduced 13 years ago, and the vast amounts of work that clearly still need to be done.

But since sustaining spinal cord injury (SCI) six years ago in the Manchester Arena atrocity, where Martin was the closest survivor to the site of

the explosion, he has seen first-hand the lack of provision for disabled people - and has dedicated himself to making positive change.

Through his iconic Martin’s Mountain challenge, which saw him become only the second paraplegic person to climb Mount Kilimanjaro and send a clear message about what is possible despite disability, he has raised well over £900,000 for the Spinal Injuries Association (SIA) - the organisation he credits with helping him rebuild his life when support from elsewhere was non-existent. His goal of £1million is now within touching distance.

Now, Martin - who has become vice president of the SIA wants to make lasting change in society, by ensuring people with SCI receive the support they need and deserve, and starting the revolution in how people view disability.

“Without starting a revolution, perceptions and attitudes don’t change,” he tells NR Times.

“When I look back at when I was injured, I didn't have >> 7

CSO ST RY PV OENRS O RO ED

anyone to inspire me or to make me think that I could live a normal life.

I'm always very conscious about that.

I’m the same person with the same brain, but now face so many more challenges every day.

“People are being told today they’re not going to walk again, they might think their life is over. I know what that’s like.

“But then I get messages from people all over the world who are in spinal units and they’ve seen my videos, they’ve seen me climbing Kilimanjaro - they see what is possible.

“It’s not going to happen overnight, but we want to change attitudes, to show what can be done. I’m proud and humbled with the support I’m receiving from all around the world, and I’m committed to making a difference for all of us.”

‘I wasn’t a person, I was a number’ Having been critically injured in the terrorist attack, Martin - who attended the Ariana Grande concert that night with daughter Eve, who continues to rebuild her life after serious brain injury - was taken to Salford Royal Hospital where he underwent 14 hours in surgery.

While thankfully his life was saved, Martin was given the devastating news that he would never walk again.

After the “fantastic” care in the acute environment, he was then moved to a spinal unit. And at that point, Martin began to realise the appalling reality so many people with SCI face.

Having been discharged back home after six months in hospital, Martin speaks powerfully about the lack of support.

“It was hell on earth. I had to sort everything out myself. I still had open wounds on my back and I’m having to sort out a GP, dentist, my own community support, my own benefits, I didn’t even know I was entitled to benefits,” he recalls.

“There was no help or support or basic signposting. I was left to rot.

“Bearing in mind what I'd been through six months earlier, they weren’t bothered, I was treated as a number. It’s just a process of ticking

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a box and saying you’re done. I wasn’t treated as a human or a victim. I was very angry and it still makes me angry.”

Martin was also discharged without a suitable home to go to, with the family cottage no longer able to accommodate his needs.

“I was almost left to rot in a care home. We were actually classed as homeless by the NHS, as the home we had wasn’t accessible and couldn’t be made accessible,” he says.

“I was put into a care home for severely disabled people and people living with serious mental health problems. It was hell. We found a new house, my wife hired a van, and we moved so I could get out of there. But then there was nothing, no support.”

While some mental health support was offered while Martin was in the spinal unit, he declined.

“They could never have understood what I’d been through,” he says.

“When you have SCI, you’re three times more likely to have suicidal thoughts - but mental health support with a speciality in SCI seems non-existent.

“It’s so important that you have both, because without understanding the SCI aspect of it, how can the support be appropriate? I know of one person who really struggled to breathe because of their injury, and they were told by their mental health person to take deep breaths to music. How are you going to do that when you struggle to breathe, or breathe with the support of a machine?

“Having SCI is not just about not walking, there are so many other factors, unique factors, which need to be considered as part of specific SCI mental health support. This is why I am so pleased that SIA have trained counsellors who are SCI, they understand and are changing things for the better.”

Access to rehab is also a huge challenge, with well-documented pressure on NHS resources meaning those who rely on community care and cannot fund privately, face severe disadvantage.

"There are thousands of people who

“It's not going to happen overnight, but we want to change attitudes, to show what can be done"

SCPO OVNESROSRTEO D RY

rely on carers, and don't have access to these amazing facilities we have in the country, which a lot of time do have space and could be used to help people with SCI access the equipment and support they need,” says Martin.

“For example, I spent six months at the Institute of Health and Performance in Manchester having rehab, all of the Manchester bombing survivors had rehab there. It’s fantastic, footballers and boxers go there, the Olympic team train there - but 75 per cent of the time, it’s empty, stood there doing nothing.

“There are similar facilities all around

the country, so why can’t we use these for NHS patients to help with physio?

As soon as you leave hospital, your physio drops off a cliff, at the exact point you need it most.

“If you’re in a wheelchair, you can’t just access the local gym or swimming pool, they’re not accessible. We need a whole new approach to rehab, which is going to be better for everyone in the longer term.”

The need for a revolution Adjusting to life in a wheelchair was always going to be a difficult process - but the reality of trying to negotiate

the world, or namely the UK, came as a shock to Martin.

“In travel, tourism and hospitality, it’s shocking. I think it’s worse that they’re allowed to get away with it,” he says.

“It's like a military exercise if we want to go shopping, go to a restaurant, go for a weekend break on holiday.

We've got to find out are there accessible rooms? Is there a lift? Are there toilets? Is there a ramp?

“We can't just rock up somewhere, and that’s wrong. We shouldn't have to do that in the UK. I'm still being told when I ring hotels that they only have one accessible room and it’s taken, or they

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don’t have any at all.

“I can’t even go shopping on Bond Street in London, one of the most famous streets in the country and probably the world, because it’s not accessible.

"How can that be that case?

“We have the Equality Act, but can you imagine people from the BAME community, or the LGBTQ community, being told you can’t come in here because you’re gay, or because of the colour of your skin?

"Yet that’s what we’re being told every single minute of every day and it goes under the radar.”

But while Martin continues to discover the practical realities of negotiating the UK as a disabled person, for him, the biggest challenge lies in perceptions and attitudes.

“We can put up ramps until the cows come home, but unless attitudes and perception of disability change, then we’re never going to get anywhere," he says.

“But look at what has happened in the BAME community and the gay community.

"If you look back 40 years, being homosexual was illegal in this country. If you look at America in the 1960s and what that was like for black people.

"You can’t believe that would ever happen, because things have come so far.

“Ultimately we’ve got to do the same thing, we’ve got to change attitudes and perceptions where people accept that it’s not right that disabled people can’t go to a hotel, it’s not right they can’t use a toilet in a restaurant.

That’s not good enough.

“It’s going to take a long time, maybe decades, to get there.

"There’s pressure on all of us to start making the change and to stop disabled people from being treated this way, feeling like third class citizens in their own country.

“I’d love to get in the car and go away for the weekend where everything will be accessible - it sounds like a utopian island, and it’s kind of a dream, but it shouldn’t be.”

Elsewhere in the world, Martin points out, accessibility is much more commonplace and the approach to disability is much more proactive - meaning the UK, the sixth richest country in the 10

world, has a lot of work to do.

“You go to America, Australia, you never once feel disabled. I lived out in Australia for four months on my own and never felt disabled. Yet here, you are well aware you’re disabled every day,” says Martin.

“I think that follows through into everything about spinal cord injury research, rehab.

“Europe are now 15 or 20 years ahead of us, America and Australia 25 to 30 years ahead of us in terms of how they're looking at neuro-physics. The way we look after spinal cord injured people hasn’t changed since the 1970s.

“I’ve seen with my own eyes what is happening in Australia, and I’ve come off my medication since I’ve been there. It’s mind boggling. I have a severed spinal cord but I got my legs to move, I was doing leg curls in the gym.

Even my spinal consultant said ‘How the hell are you doing that?’

“But in this country, we’re told we can’t do this in the NHS because there’s no research - well bloody do the research!

The things that are happening around the world are leaving us so far behind, and at the minute the NHS is just closed off to it.”

Martin’s Mountain Having seen on a daily basis how disabled people are viewed and treated by many, Martin wanted to make the ultimate statement around the ability people have with SCI. Climbing Mount Kilimanjaro, a huge-

ly challenging feat for anyone, in a wheelchair sent out a clear message to the world about what was possible.

And from the main motivation of breaking down boundaries came the desire to raise vital funds for the SIA, which has played such a hugely important role in Martin’s life post-injury.

He chose the ambitious target of £1million pounds to help fund the charity’s vital work.

“The fundraiser was secondary, it was more about look at what somebody who is disabled and in a wheelchair can do when they've got the right help and support,” says Martin.

“It was a message to let's give everybody that help and support. Look at what we can do when we get that - we can do the impossible.

“We can show the world why we should embrace disability, let’s celebrate disability.”

And on June 9 last year, Martin - using an adapted Bowhead bike - became only the second paraplegic ever to scale Mount Kilimanjaro, with some of the team who had supported him during his recovery by his side.

Donations continue to come in, with the £1million target moving closer by the day, and the inspiration many found in Martin’s Mountain continues to spur people on in their own challenges.

His achievement has been acknowledged with Pride of Britain and Points of Light awards.

Alongside Martin’s epic challenge, countless people around the world took part in the #EverydayMountains initiative, which inspired them to complete their own personal ambitions, however big or small.

“It has been amazing, I’ve heard stories from all around the world, we’ve had kids completing runs in playgrounds at school to raise money, it’s been fantastic," says Martin.

"The love and support we’ve had from all corners of the world has been beyond anything I expected.

“As well as showing what’s possible when you’re in a wheelchair, it went well beyond that. It became about more than people with SCI. For someone who wants to lose weight or give up smoking, or get through their paperwork or clean out that room,

C O V E R S T O RY

that can be their mountain.

"Everyone has got their own mountain to climb."

While the trek took a significant physical toll on Martin - “it probably took six months to recover, being honest” - the lasting impact has been powerful.

“Kilimanjaro was very symbolic, and people now want to talk to me, people want to listen. It has given me a voice to speak for people who feel they don’t have one,” he says.

"I've got an army of troops all around the country" “There is pressure that comes with that, of course, but it’s about changing things, starting that revolution. And we certainly did that, and continue to do that. I’ve got an army of troops now all around the country, and even around the world, who have seen what is possible.

“I’m very humbled by the support, it has been amazing, but we need to build on this and take people with us to make change.”

Martin’s Mission Having become vice president of SIA, and known around the world for his extraordinary challenge and fundraising, Martin is well-placed to lead the charge for change.

Knowing all too well how little support exists, even down to basic signposting of what services are available and where to seek assistance, Martin wants to start from the lowest levels and work towards his overall ambition of making an accessible world where disabled people are properly supported.

And based on his own experience, he knows the hugely important role the SIA can play in this.

“We know that of the seven people who will get a SCI every day, only three of them will get the help and support they need. As a charity, we are being referred 75 per cent maximum of these survivors, but it should be everyone and it needs to be everyone,” says Martin.

“On the day I was told I’d never walk again, Gary Dawson, a peer support worker at the SIA, came to my bedside.

I had no idea that wasn’t commonplace, I thought everybody got the same. When I found out that isn’t the case, I was just like ‘Oh my God’. Even that level of support isn’t consistent and so many people won’t receive it.”

At his request, Martin has had two meetings with Tom Pursglove MP, Minister of State for Disabled People, Health and Work - one in Westminster and the second at the SIA headquarters, for the MP to meet staff and volunteers to understand first-hand the many challenges SCI people face.

For Martin, he was keen to secure support for SIA’s wish for everyone in hospital with SCI to have access to the support services that they provide - and progress is being made towards this.

“I want everybody in a hospital or a major trauma centre with SCI in the UK to automatically be referred to the SIA, and I won’t stop until that happens,” says Martin.

“We’ve got spinal injury nurses, we’ve got peer support officers, we’ve got the mental health advocates, we can help with care and support packages, we can help get the right wheelchair.

“Whatever you need as a spinal cord injured person, we can help alongside our partners.

“But we hear of people who have lived with SCI for 20 years, yet they’ve never had access to the support SIA provide.

How can that happen? That needs to change, and it needs to change from the earliest days.”

Nominating the SIA as the primary supporter of people with SCI will undoubtedly, in time, require the growth of the charity and its resources - something else Martin is pushing for.

“My hope is eventually we’ll be in a position where we can cater for all those with SCI, and tailor that support to what the particular person needs,” says Martin.

“The people who don’t have the support they need, they’re the ones who are ending up back in hospital with pressure sores and UTIs and, through

no fault of their own, they're blocking beds.

“So what we're saying is, invest in us as a charity, and we can help.

“It will take the Government to support us, and while Tom was very interested and engaged, and I am confident things will happen, the proof is in the pudding. I know it’s not going to happen overnight, but I want it to happen.

“As I said to him, ‘This isn’t a day trip, it isn’t a meeting where you can put a tick in a box to say you’ve met someone in a wheelchair. I’ll keep you on your toes’. And as people who know me will know, when I want to do something, I’ll do it. 100 per cent.”

While there is clearly a long way to go in achieving Martin’s ultimate ambition of creating an accessible UK, his commitment to the challenge is unfaltering.

“In my role as vice president, I want to use my profile and my story for things to change. This can be a force for good, and I want it to be a catalyst for change,” he says.

“There is a long way to go, but we need to do this. It might take years, but we are making a start, making that change.

“If everybody with SCI gets the help and support they need to live a fulfilled life, then I’ll die a happy man - and that’s the goal.” @MartinHibbert

“Everybody has got their own mountain to climb.”

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N R news

IRCM in a ‘brilliant place’ as it looks to the future The body created to help shape the future of case management is in a “brilliant place” to move into the future, after three years of work ‘behind the scenes’ to take it forward.

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he Institute of Registered Case Managers (IRCM) was formed in 2020 to bring new levels of professionalism and accountability to case management, and with it a series of stringent technical and professional standards.

During the past three years, the IRCM has made significant progress towards its goal of accreditation by the Professional Standards Authority (PSA), to which it hopes to submit its application in the near future. It is also close to opening registration for case managers.

Now, as its current chair Angela Kerr prepares to step down after completing her agreed three-year term, she said the groundwork to date has placed IRCM - created jointly by the British Association of Brain Injury and Complex Case Management (BABICM), the Case Management Society of the UK (CMSUK) and the Vocational Rehabilitation Association (VRA) - ideally for going forward and to support the further development of case management as a profession.

“IRCM has grown and is more established now. People are talking about it and we’ve got a big supporter community,” says Angela, who was chair of BABICM prior to taking up the role with IRCM. “It's in a brilliant place now. We’ve been getting all our ducks in a row and everything's coming together for opening registration and our PSA application. role in the organisation’s processes.

“The main thing for us back in 2020 was to ensure that “We have been developing the structure to sustain the IRCM was accepted and would be valuable to the case work of IRCM going forward and recruiting panel members management industry, which I would say essentially, we’ve is another essential step,” says Angela. proven over the past three years. It has been great to see “In the event that any concerns are raised about regisso many organisations and individuals stepping forward to trants practice, we’ll be following our policies to review get involved.” these. Our panels will play an important role in considering IRCM has been recruiting for a new chair to take over after these and also be involved in other areas such as appeals, Angela steps down in June, as well as panel members to reviewing the issues and making appropriate recommensupport the work of the body. Recruitment is set to open dations. It is vitally important to have a bank of panel for positions including directors and members of the members in place before we start registration, so that if we board’s committees and groups later in the year – these need to call on that resource, we can do. will include both registrant and lay roles.

“It’s essential we have systems in place, and trained peoAngela believes adding panel members is important aspect ple to support those systems.” of the ongoing development of IRCM as they play a critical For more information, visit www.ircm.org.uk.

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N R news SPONSORED

Charity goes back to basics to promote stroke prevention

A

charity committed to changing the outlook for brain haemorrhage research and prevention is taking its approach back to basics to reinforce key health messages and help more people avoid stroke.

The Natalie Kate Moss Trust (NKMT) was founded following the death of Natalie aged only 26 after brain haemorrhage, and since that time the charity has dedicated itself to funding groundbreaking research into future treatment.

Working with the University of Manchester - of which Natalie was a graduate - NKMT’s funds are pioneering world-leading work into new therapies, including a project involving zebrafish and repurposing existing medication, which could deliver significant improvements in the survival rate after haemorrhagic stroke.

Now, while continuing to fundraise for a more positive future, NKMT is concentrating on the present and helping people to better understand some of the main causes of brain haemorrhage to help reinforce key messages around prevention.

Through content developed alongside academics and health professionals, and events to help promote health and wellbeing, NKMT will support people young and old to improve their own health and minimise the risk factors for stroke.

“We have always been focused on prevention and treatment, and now we really want to put more focus on prevention and reach a broader audience, to make a difference to people’s lives now,” says Fiona Moss, Natalie’s sister and director of NKMT. “On average, in a population a third of people will have high blood pressure and 50 per cent of them won't

know they have high blood pressure. There's a huge number of people that are walking around, not just with the risk of brain haemorrhage, but with the risk of many other conditions as well.

“We are going to help people understand how brain haemorrhage can be prevented through addressing lifestyle factors. One of the leading causes of preventable, lifestyle-related brain haemorrhages is hypotension - and that is something that people can help to change themselves.

“We want the messaging to be very simple, so it’s relatable but empowering. It’s not rocket science.

We want people to look at the preventable factors lifestyle, high blood pressure, nutrition, sleep, stress, alcohol consumption - and realise that these are contributors to health conditions that can result in brain haemorrhage.

“For a lot of people, if it’s not directly related to them and their life, they’ll listen but then forget about it. But we really want people to engage and realise that this is something that applies to us all and is something that we ourselves can change.”

The refocus of the charity into health messaging is part of its new strategy, which wants to ramp up its efforts around prevention of the tragedy that impacted the Moss family in 2012.

“We don’t want to appear just as a charity - we want to appear as more of a B Corp, essentially a business that does good,” says Fiona.

“We don’t just want to be about looking for donations, prevention is very important in this, so we are refocusing to concentrate on that in ways we haven’t done so far.

“And then the conversation can feed into the knock on effect of that, so if they do donate, they are helping to fund the research into the prevention.”

To help with its fundraising, NKMT has launched a volunteering programme for ‘champions’ who can support its work in ways that are possible for them.

“We want to get more people on board, but if they don’t want to run a marathon or cycle the length of the country, then we would love them to run a comedy night or a pub quiz,” says Fiona.

“We’ve got some things in the pipeline over the summer, which will be about wellbeing but also will have a fundraising aspect, which is again bringing together the research - which the fundraising enables - and prevention.”

To find out more, please visit nataliekatemoss.co.uk.

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N R news

Exercise videos support stroke survivors in physical activity A

charity which enables stroke survivors to rediscover the benefits of physical activity is looking to create a third series of dedicated exercise videos after the huge success of the first two.

A Stroke of Luck was created to support survivors with their mental and physical recovery through a range of exercise-based resources, direction and advice, empowering them to rebuild and move on with their lives.

The charity has created two series of 12-week exercise programmes for stroke survivors, in partnership with the Stroke Association, which are devised by specialist neuro physiotherapists to reflect specific rehab needs.

The videos are categorised as red, amber and green, geared around the physical abilities of survivors, with red being for those with limited movement through to green for those who can exercise independently.

And the content has proved such a success - and has extended beyond stroke survivors into people with a range of neurological conditions - that a third series is now planned, with A Stroke of Luck looking for funding streams to make the project possible.

The ethos of A Stroke of Luck comes from its founder Craig Pankhurst, a former elite international swimmer who had a stroke in 2018 in his mid-30s, after falling into a largely sedentary lifestyle through the demands

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of his high-pressured corporate career.

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

“Being active again improves confidence, promotes cognitive recovery and well as enabling your body to recover, and increases social mobility.

“That is central to who we are at A Stroke of Luck and what we offer. The videos are a very important part of that. The response has been fantastic, there has been a strong appetite for this content and not just from stroke survivors, but from many people with MS and other neurological conditions.

“The content is created by neuro physios, so it focuses on factors like fine motor skills and appropriate exercises for the affected side, and is delivered in the comfort and safety of a person’s own home.

“The response has been excellent and we would love to do more, but need to secure the funding to enable us to do this. The demand is certainly there and there is an ongoing need.”

In addition to grant funding and fundraising, A Stroke of Luck is also looking for support from businesses through new corporate partnerships.

For more information, visit astrokeofluck.co.uk.

SPONSORED

Person-centred care what does it mean?

In the fields of brain injury rehabilitation, caring for adults with complex needs and caring for adults with learning disabilities, a ‘one size fits all’ approach would consistently fail. In all walks of life we are all individuals with different personalities, characteristics and preferences. When an acquired brain injury or learning disability is added to the mix, then catering for individual needs is more important than ever. But what does that mean in practice?

At Richardson Care we really try to get to know the person and understand their needs. We have a multi-disciplinary team (MDT) of therapists who are all involved with each individual’s care to a greater or lesser extent. This MDT comprises a consultant neuropsychiatrist, clinical psychologist, assistant psychologists, neuro-physiotherapist, speech & language therapist and occupational therapist.

The multi-disciplinary team meets regularly to review and discuss the care package that is put together for each individual.

We aim to deliver the most effective care while reducing the administrative burden by providing an inclusive care package. This means that funding is agreed at the outset and we don’t have to put in extra requests for additional ad hoc support.

The managers and care staff implement the care plan on a daily basis and each service user also has a dedicated key worker.

They get to know them very well and provide valuable continuity in their care.

Thinking outside the box Person-centred care can also mean thinking outside the box to deliver the right type of therapy and activities to

encourage confidence building, for example, or physical dexterity. These activities may include arts and crafts, music, drama, sport, computer games, board games, cooking, shopping or gardening.

At Richardson Care we are also willing to offer different activities such as work

placements and to take service users on holiday – something that they may not have done since sustaining a brain injury.

Clinical psychology provision We have found that ongoing clinical psychology provision delivered by a dedicated team is crucial for the well-being and progress of service users. It helps to maintain their mental health and any problems can be addressed early, helping to prevent the need for crisis care.

In addition, providing bespoke psychological support enables the person to better engage in other therapies. This is facilitated by the close collaboration of the MDT. We have also found that reducing drug therapy and focussing on psychosocial approaches can result in better outcomes for service users in the longer term.

For more information call 01604 792166 or visit richardsoncares.co.uk.

Person-centred care can mean thinking outside the box to deliver the right type of therapy and activities

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Implementing technology into clinical practice- five key considerations

T

echnology is fast infiltrating all areas of our lives, from devices which help around the home to apps which record our health data. It is a natural progression that therapists are looking towards technology to enhance their clinical practice.

But with so many technologies available, what should therapists be considering when looking at the options? Occupational therapist Lauren Edwards shares her recommendations for investing in the right technology for your practice.

1. Evidence based Investing in equipment must enhance my clinical practice and this means that it needs to align with my theoretical underpinnings. Research on neuroplasticity and dosage theory suggests massed practice alongside progressive intensity will bring the greatest benefits to our patients.

Equipment which enables this together with immediate feedback on performance supports the principles of motor learning.

2. Clinical application As with any treatment plan, the outcome must transfer to enhanced function for my patients. A clear understanding of my patient’s goals, alongside movement analysis helps to guide a prescription for the activities which support repetition and graded intensity. The right neurotechnology can supplement your treatment plan by providing a means for mass practice to strengthen the component movements, freeing up therapy sessions to work on whole task practice.

3. Accessibility Whilst there are plenty of mainstream devices and apps available, technology designed for those with disability ensures accessibility. The equipment must be sensitive enough to register minute movements to support those with minimal ability and record improvements in ability. It must also be intuitive enough for those with communication deficits to navigate and offer a variety of activities which allow for simple or stimulating cognitive load.

4. Usability Engagement is crucial for a successful treatment plan. Technology which incorporates elements of gamification supports motivation to engage and progress. Gamification elements such as progress badges, points and stars help to invoke a sense of achievement and increase motivation to continue. Improved adherence will ensure greater commitment and ultimately better outcomes.

5. Affordability As a business owner and practitioner, investing in large pieces of therapy equipment can be daunting. Selecting a device which can be used across multiple conditions ensures that it can be used in a variety of settings with a range of conditions and at multiple points along a person's rehabilitation journey. Neurotechnological innovation presents a tool to disrupt and redefine clinical practice. How we choose to move forward with (or without) technology will define our practice and shape the future of our profession.

How James is benefitting from tech in rehab GripAble offers gamified rehabilitation technology for the upper limb that encapsulates many of the above considerations. James’ story helps to show how implementing the right neurotechnology into clinical practice can help patients rebuild their lives.

James was recovering from a brain injury and had a moderate right hemiplegia. He wanted to be able to brush his teeth independently but was struggling with grip strength and coordinating his movement.

He lived in a rural community and had difficulty getting to a clinic. As his participation dropped off, so did his function.

GripAble’s gamified rehab instantly re-engaged James and his therapist was able to design a bespoke programme using the activities.

The sensitivity of the device in detecting subtle movement changes helped both James and his therapist track the small but important gains of his efforts.

This opened up better communication between James and his therapist as well as maintaining his motivation. His therapist was able to monitor him remotely, set new goals and intervene when his adherence dropped off.

When James was able to attend the clinic, sessions focused on task practice which saw vast improvements following his home practice.

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From physio to managing director

Richard Thorp shares his reasons for founding Circle Case Management and why satisfaction comes from being known as a good boss

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I

often get asked if I miss being a practising physiotherapist - and the answer is no, I don’t.

I started my working life more than 30 years ago in banking and finance and then went back to university in my thirties to do a physiotherapy degree. This switch was prompted by the fact that as I grew up and matured, I began to realise that I wanted two main things from a job - I wanted to work with people, and I wanted the ability to live and work wherever I wanted and not be tied to a major city like London.

The switch worked out well for me as it enabled me to get great satisfaction from helping people to recover from illness or injury. I was also able to move to the South West, a fantastic area to bring up a family.

The other great thing about being an allied health professional is that there are plenty of opportunities to adapt and change what you do and to work freelance.

After some years in the NHS I began to feel the need to flex my entrepreneurial skills. I did some research and up-skilled into doing a range of different assessments and rehabilitation based around ergonomics and vocational rehabilitation, which led me to branch into case management working with injured people who wanted to get back into work or meaningful activity.

After a few years as an independent practitioner, an opportunity arose to team up with my wife and another business partner to start our own South West-based case

management business. Circle Case Management Ltd was born.

Back in 2015 when Circle was formed, we had no idea how things would turn out but we had the advantage of having a good skills mix within the senior team and bags of enthusiasm. I took on the role of MD using all my finance and business skills to plot a course for the business and we steadily grew.

As is part of growing a business we have tried lots of different things, but the most important thing for us is that we have stuck to our core values of honesty, excellence, collaboration and creativity.

We have made mistakes, but when we have hit bumps in the road we have always reverted to these values which have stood the test of time, and as a boss I try to be as kind as possible to our staff. This is where I get my satisfaction from in my job.

I am not a practising physiotherapist anymore but I aim to be the best employer I can be. This, along with seeing my plans and strategies come to fruition, gives me a great deal of satisfaction.

Eight years on, Circle is now an established award-winning UK wide business providing high quality case management, expert witness reports and mental capacity assessments. We have a fantastic staff team all over the UK and I am still enjoying living in the South West, and helping people as a good boss rather than a physiotherapist.

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“Anthony Gold is a leading Law firm based in South London. Our solicitors specialise in a wide range of legal solutions and are experts in their fields. We are negotiators and litigators, and are committed to doing whatever is best for our clients. For more information on Anthony Gold visit www.anthonygold.co.uk”.

Medical negligence claims for spinal cord injuries 24

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Dr James Piers on why the difficulties faced by those with spinal cord injury reach far beyond the physical limitations in ability “I haven’t seen a sunrise or a sunset since my spinal injury."

These were the words of my client after suffering a spinal cord injury as a consequence of medical negligence.

As everyone reading this article will already know, the effects of spinal cord injury reach far beyond loss of limb function.

For somebody who previously led a fully independent life, going to work and enjoying active pastimes, adjusting to life with a spinal cord injury often seems like an impossible hurdle.

For many of my clients with a spinal cord injury, the transformation from independence to near complete dependence happens in a blink of an eye with no opportunity to adjust gradually.

"Cases of spinal cord injury arising from medical negligence are rarely straight forward" In this case, my client had been in full time work and had enjoyed walking the dog, taking the children on outings, gardening and jogging. Upon waking from surgery, they had lost all function in their legs.

This marked the beginning of a long road of rehabilitation and ultimately heavy dependence upon others. There was substantial reliance on carers arriving in the morning followed by a daily visit from the bowel care nurse. Following this they would be hoisted out of bed into a powered chair where they would remain for the rest of the day. Despite having extensive needs, the locally provided carers were only able to visit twice a day.

We are all acutely aware of the financial pressures on public services, so an element of rationing is inevitable; however, it seemed that my client’s needs were addressed based on what was required to keep them safe instead of what was required to restore some of their previous levels of independence.

The process of getting out of bed would last until 11am. This was when their “new normal” day could finally start.

The availability of carers meant that they would return to start the process of transferring my client back to bed at around 6:30 pm. They were in bed by 7:30 pm with no choice in the timing.

This was in stark contrast to their pre-injury routine, where they might have gone out for a meal or to the cinema and gone to bed at around 11:00pm. That was no longer possible.

On arriving home from hospital, they were immediately confronted with the reality that they would no longer be able to access the upstairs floor of the family home. This meant converting a downstairs room into a bedroom, complete with a hospital bed, all of which came at cost both financially and emotionally.

Ventilation was poor and there were no windows. Not only had they lost the ability to sleep in the marital bed, but they also lost the simple pleasure of viewing the outside world between the hours of 6.30pm to 11am.

This is no more than the briefest of glimpses into the total upheaval of life following a catastrophic spinal cord injury. The broader extent of the impact of this spinal cord injury on all aspects of life was utterly devastating. However, with greater access to carers, my client’s quality of life could have been improved immeasurably. Sadly, the inevitable rationing of public services dictates that patient safety must come first, over quality of life.

In situations where spinal cord injury has arisen because of medical negligence, compensation may be available.

The yardstick to assess the extent of compensation is loosely “the amount which the client reasonably requires to put them back in the position they would have been in had the negligence not occurred”.

This assessment, therefore has the potential to 25

SSPPO ON NSSO ORREED D

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provide sufficient funds to meet the costs of care and assistance at a level exceeding that which the state can provide, and which can go some considerable way to restoring the client’s previous levels of independence and quality of life.

In some cases where a person or organisation will bear responsibility for a client’s spinal cord injury, some compensation can be paid on an interim basis to the client as the legal process continues. These funds enable a lawyer to engage professionals to put in place care, assistance and rehabilitation beyond that which may be available through local state provision.

Sometimes however, a Defendant will not make a payment of interim compensation unless it thinks that it is likely to be found liable by a Court or has admitted liability. This creates delays in the rehabilitation process, and it is the client who suffers.

Cases of spinal cord injury arising from medical negligence are rarely straight forward. They typically arise from missed or delayed diagnosis, mismanagement of trauma or surgical error.

It is essential to keep in mind that the simple fact that treatment has gone wrong, or a patient has had a poor outcome does not inevitably lead to a successful medical negligence case with an award of compensation. Put bluntly, things do go wrong in medicine through no fault of a clinician.

To succeed in a case, one must prove to the Court that the care was so poor as to be considered unacceptable and that because of that failing in care, the patient sustained injury and loss that would otherwise have been avoided.

Underlying medical conditions affecting the spinal cord tend to be rare.

The initial presenting features maybe mild and may mimic other less serious common conditions.

For example, back pain with or without sciatica is an extremely common presentation and the vast majority will not lead to serious problems and will probably resolve with simple therapeutic measures.

Within that broad group of patients however will be a very small group that

may have impending cauda equina syndrome, for example. It is not currently practical to scan every patient with back pain and so a careful assessment is required to identify that group that requires further investigation and to ensure those investigations happen at the right time. It is often the case that in assessing these patients inexperienced clinicians may miss subtle features in the presentation that point to a more serious underlying diagnosis.

Even in legal cases where a shortcoming in the care is identified, it may still be successfully argued by the Defendant that, even with proper care, the die was already cast. In other words, by the time the true underlying diagnosis should have become apparent, there was already insufficient time to take therapeutic steps which would have avoided injury or, at least, improved the outcome.

These cases require very careful analysis.

I have been working in the field of medical negligence for over 15 years and am a specialist in spinal cord injury matters. I have been fortunate to have had the rare opportunity to be able to practise exclusively in the field of spinal cord injury arising from medical negligence for the last five years, accumulating a wealth of experience.

"It is often the case that in assessing these patients inexperienced clinicians may miss subtle features in the presentation that point to a more serious underlying diagnosis."

Furthermore, prior to qualifying as a lawyer, I was a hospital doctor in the NHS for over 6 years. This medical experience is invaluable in the careful analysis of cases and assisting clients through the process of a medical negligence matter. These are complex matters that are unfamiliar to most clients. The process can feel bewildering, and I believe it is essential to be able to put a client at ease with simple explanations of the inevitable complex medical and legal issues.

In this article I have only touched upon a small aspect of the medical and physical consequences of spinal cord injury.

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"The difficulties faced by those with spinal cord injury reach far beyond the medical consequences or physical limitations in ability"

However, it must be borne in mind that the difficulties faced by those with spinal cord injury reach far beyond the medical consequences or physical limitations in ability. Those who have suffered spinal cord injury will often find themselves experiencing difficulties and discrimination at work (for those fortunate enough to be able to find work) as well as domestic difficulties, sometimes including unemployment and relationship breakdown. Management of a compensation fund is also complex as it must meet the costs of lifelong care and assistance.

Not only is it important to choose a medical negligence solicitor carefully, but choosing a firm such as Anthony Gold, which provides a range of services beyond a medical negligence claim, is critical to assist with the burden of additional legal challenges giving clients breathing space to simply concentrate on being the best that they can again.

Dr James Piers is a solicitor, medical doctor and barrister. He works on high value medical negligence matters. He also has a special interest in cases that involve complex medicine and surgical errors, and the management of critically ill patients. Alongside his legal practice, James regularly gives training on medicolegal report writing to senior doctors wishing to become expert witnesses and he has been asked to speak on issues of medical law and patient safety at various professional conferences. Clients who work with James find that his calm and focused approach instantly reassures them that they are in safe hands. His key intention is to not only achieve the best possible compensation payment for his clients’ life changing injuries, but to also put their minds at ease about their future financial stability.”

Contact James on 020 7940 4060 or at jpi@anthonygold.co.uk.

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Rebuilding lives through neuro-rehab How Askham Rehab supported Sarah to regain independence only four months after Guillain-Barre Syndrome restricted the movement of her arms and legs

“Seeing people make this kind of progress, rebuilding their lives and being able to go home to their families - that’s what this is all about.”

And for the team at Askham Rehab, their long track record in supporting people to regain independence after serious neurological illness or injury continues further with the latest hugely positive outcome for one of its patients.

When Sarah Meakin arrived at the specialist neuro-rehab centre, she was “very unwell”, having just left an acute setting after being diagnosed with Guillain-Barre Syndrome (GBS).

Arriving at Askham Rehab in

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December, 43-year-old Sarah had very limited movement in her arms and legs, and also lost many of her teeth due to her diabetes being a complicating factor.

But the absolute determination of Sarah to recover, with the commitment and capability of the Askham therapy team, proved to be a powerful combination and now, barely four months later, Sarah is back home with her family. Such is the progress she has made in a very short space of time that she has been discharged without a care package or provision, and the support of her partner and teenage son are enabling her to rebuild her life.

“Sarah is such a lovely person and we

couldn’t have asked for any more from her rehab. We asked for 100 per cent and she gave 110,” says Sara Neaves, clinical lead at Askham Rehab.

“She was so motivated and engaged from the very outset, even though she was very unwell when she first came. The progress she has made shows what is possible with the right rehab and the absolute determination to achieve goals.”

Therapy in action When Sarah arrived at Askham, she was thoroughly assessed to see what therapeutic input would be required.

"Sarah was so motivated and was managing very well, so she didn't need

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any psychological input. Although she had very sadly lost her teeth, she didn’t need any speech and language therapy and her swallow was fine,” says Sara.

“So working with the physio and OT, Sarah was able to identify very clear goals of what she wanted to achieve, and our therapists were able to map out how that was going to happen.”

Sarah identified a number of goals - to return home, to go on a pre-planned UK break, and to rediscover the ability to walk.

“The pain was a big obstacle, she was in a lot of pain when she came to us and struggled with that a lot,” says Sara.

“That is normal and part of the process of recovery from GBS, and it was also affecting her sleep. She did a lot with the OT to put some practical strategies in place to support her with this, as we needed to address this first. Sarah engaged in a lot of activities, from crafts to listening to audiobooks and music, through to hydrotherapy which is fantastic for pain, and this made a real difference to her.”

Bringing in Askham’s wide range of therapy options, from its hydrotherapy pool and Functional Electrical Stimulation (FES) to its suite of robotics - and newly-introduced VR rehab provision through its partnership with Neuromersiv - Sarah was able to benefit from them all.

“Sarah had a wide range of different activities, from being in the gym through to cooking with the support workers and making spaghetti bolognese with garlic bread - we wanted to engage her in as many functional tasks as possible to prepare her for going back to her life,” says Sara.

“We got her into the hydrotherapy pool quite early on, which was very useful in terms of weight bearing and rebuilding her strength. We did some very intensive physio work to address how the GBS had affected her muscles and encouraged her arms and legs to move in a co-ordinated pattern.

“The use of FES was very important, and while initially she had very little movement at all, the FES and the carry over from that meant she could walk unaided. There was a huge amount of hard work involved in making the progress Sarah did, but we also try to bring the fun into it too, wherever we can.

“For example, with the hydrotherapy pool, that is a functional but also fun form

of rehabilitation. Our robotic equipment also has a fun element to it, and I think the VR work we did was a great example of how it can work.

“We were able to recreate the kinds of tasks she would be going back home to, practical things like cleaning the bathroom and remembering to turn the tap off and cleaning up any splashes.

“We’re lucky to have the variety of options we do to make rehab engaging.”

Return to independence Happily, within four months, Sarah was in a position to return back home, having achieved all of her identified goals. After arriving at Askham with very limited movement, being able to stand rather than take steps, Sarah has now recovered the ability to walk unaided.

And in line with her goal of wanting to return home, as she progressed in her rehab, Sarah was able to enjoy time reintegrating back into home life and to support her son in the run-up to his GCSEs. “We were able to plan integration back into being at home and build up to that,” says Sara.

“We started with an overnight stay and built up to facilitating weekend leave, with her partner being able to support her back at home. We knew it was a very important time for her son and that she wanted to be there with him, so we did everything we could to make that happen.

She was also able to go on her planned holiday in the UK with her partner. That was in February and she was able to mobilise with a stick.

One thing she identified as being important for her was to get out of the bath, and she was also able to do that by this time with a bath board. Now, she is able to do it completely independently, which shows the progress she has continued to make since February. It has been fantastic to see and be part of her journey.”

Sarah does have some ongoing need for rehab, to ensure she is able to maintain the progress she has made, and may return to Askham as an outpatient.

“We would absolutely love to have her back here for some of her physical needs, but for her wellbeing and to manage her fatigue, Sarah is at the point where she could go to a gym, she doesn’t need to go to a neuro-rehab centre,” says Sara.

“GBS is a very debilitating condition and you can never be sure of making a full recovery, sometimes there are lasting deficits. Sarah still doesn’t have sensation fully back, particularly in her left leg, so that is something we can support with going forward.

“But for Sarah, her priority was to be able to walk again, and she is very happy with the progress she has made, so the lack of sensation is something we can work on over the weeks and months ahead.”

And while the team are delighted to see Sarah return home, they have shared every bit of her emotional journey since her admission in December.

“While of course this is what we work towards, for Sarah being able to go home to her family, it’s very sad to see her leave,” says Sara.

“We have worked very closely with her, and she is a similar age to most of us in the therapy team, so we have that in common too. She is such a lovely person and we have loved working with her.

“But for us as a therapy team, it can be very emotional to do this job. It was in this instance. When you have someone walking again who you thought may never be able to walk again - how can you not get involved in that emotionally?

“We wish Sarah all the best for the future and seeing her walk out of here, particularly remembering how she arrived, is an absolute joy.” askhamrehab.com

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The positive impact of social prescribing on mental wellbeing Social prescribing may seem like a relatively new term, and whilst, indeed, some health practitioners are not fully aware of the benefits, the system of prescribing non-medicalised activities in local communities does have quite a long history.

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D

ating back to the early 1980s, the National Health Service (NHS) have trialled various schemes over the years, before incorporating social prescribing into their Long Term Plan in 2019. It’s estimated by the NHS that over 60% of clinical commissioning groups in England now have social prescribing schemes in place.

How Does It Work?

The nature of social prescribing varies depending on the location and there are a few different models, but the core concept remains the same; Health professionals such as GPs (social and charity workers too) can refer people to a ‘link worker’, sometimes called a community connector, or health adviser, who can then refer people to an appropriate scheme, activity, or group that can meet their needs better than primary health care can.

The types of activities available for people

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accessing social prescribing services are vast and can range from gardening to befriending services.

Activities are usually provided within the community and are mostly administered by charities, but private enterprises may also be involved in some areas. All activities prescribed are designed to help improve a person’s health and wellbeing, in ways that medicine can't.

Evidence suggests that when people have their emotional, practical, and health needs met within their community, they are more empowered, less likely to depend on medical care, and can actively work on their own health and wellness.

Impact On Mental Wellbeing The goal of social prescribing has always been to ease pressure on medical services and reduce care costs – essentially, help ease pressure on the NHS and reduce the number of people accessing the service that don’t need medical care but have complex needs that would be better met elsewhere.

For people accessing social prescribing services, the benefits can be tremendous with the focus being on empowering people to be more proactive when it comes to improving their health, particularly their mental health. It has long been known that there is a link between physical health and mental health, for some people, particularly those with chronic conditions, the line between the two can become blurred, and these people must have their needs met more holistically.

The type of people using social prescribing services are very varied and includes people that have mental illnesses, long-term complex health conditions, and those that are isolated either through illness, disability, or other social factors.

"For people accessing social prescribing services, the benefits can be tremendous" Although social prescribing services can be practical – signposting people to welfare support and helping with independent living, the major need fulfilled by most services is wellbeing. Complex emotional needs are often difficult to treat by primary health services, but social prescribing schemes provide access to a wide range of schemes such as community gardens, cooking groups, art therapies, and ways to keep active such as swimming or gym access.

For some people, their wellness needs can be effectively met by just having someone to talk to and expanding their social network. For example, Brighton

based charity Together Co helps connect people to places and other people, increasing their social connections, and ultimately, their wellbeing.

There is evidence that these schemes are very effective. For example, a Shropshire scheme reported in 2019 that participants reported significant improvements in measures of wellbeing and loneliness. An older project carried out in Bristol reported improvements in anxiety felt by participants, feelings about their health and overall quality of life.

Exercise based schemes can also be effective at increasing wellbeing – there are extremely strong links between physical activity and wellbeing, but for some people, accessing traditional forms of exercise, such as a gym, can be difficult for multiple, often complex reasons.

One centre in Sussex is hoping to change that and welcome a more diverse range of people to their inclusive space – VIM Health has an accessible gym that welcomes people with disabilities and chronic conditions. The gym features accessible equipment and the team are currently busy forming social prescribing links in their surrounding area so that they can welcome even more people to the gym community.

Overall, social prescribing is becoming more prominent in the public eye, as are the health and mental wellbeing benefits associated with it. Schemes have been widely adopted right around the UK and these will continue to increase in importance, particularly following the Covid pandemic which has left many struggling with the long-term effects of long Covid.

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Funding research into devastating neurological conditions

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Who we are

The impact made in the last 50 years

Brain Research UK is the leading dedicated funder of neurological research in the UK. We fund the best science to achieve the greatest impact for people affected by neurological conditions, to help them live better, longer. Every year we receive more and more funding applications from promising researchers across the UK.

In the years since we were founded in 1971, we have achieved so much. We transformed our ability to study the brain through technological advances including improved neuroimaging facilities and state of the art scanners. We have invested over £50 million in to research into neurological conditions to enable the best progress. Our researchers have made incredible breakthroughs: they have revealed genes and mechanisms underlying the early stages of brain tumour development which have led to new treatment possibilities; and identified protein clumping in motor neurones as a key feature of Motor Neurone Disease (MND) leading to the development of a new drug which has been shown to slow down functional decline in clinical trials.

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The challenge we face

One of the biggest challenges we face is that despite one in six of us having a neurological condition, research into the brain remains woefully under-funded. Brain tumours, for example, kill more people under 40 than any other cancer and more children in the UK than any other disease. As well as investing vital funds in research into brain tumours, we are prioritising research into brain and spinal cord injury and headache, two areas where the high levels of patient need are unmatched by current levels of research investment.

By prioritising research in these three disease areas we are striving to drive progress in treatment for the benefit of the many thousands of people whose lives are affected.We are also funding research to help understand how to repair the brain and spinal cord. This may be through behavioural interventions that stimulate recovery, or medical interventions, or a combination of both.

Brain and spinal cord injuries may be traumatic - caused by an external injury to the head or spine, or non-traumatic - caused by an internal event such as a stroke.

The degree of impairment varies enormously but many people are left severely disabled and need long-term rehabilitation to maximise function, independence and quality of life.

How you can help There are many ways you could help us, from raising awareness of the prevalence of neurological conditions to participating in or organising fundraising events. Please visit our website brainresearchuk.org.uk to find out more about our work and how you can support us.

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How DJing is redefining brain injury rehab First-of-its-kind programme created by BPM Rehab brings together neuropsychology and DJ education expertise

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R

ehabilitation is most effective when it is meaningful and purposeful to individuals. This was the ethos behind the development of the BPM Rehab programme; bringing together expertise from a neuropsychologist and DJ education specialist, to create the first DJ-led rehabilitation programme.

In 2009, Dr Penny Trayner began running her own community-based rehabilitation service for children and adolescents with brain injuries.

Over the next ten years, Dr Trayner gathered a wealth of clinical and research experience within the rehabilitation field. When attending a zero to hero DJ training camp in

2019, the benefits of DJing as a rehabilitation activity became immediately apparent.

Dr Trayner launched her DJ career as Penny Power and began to think of ways to incorporate DJing into her work as a Clinical Neuropsychologist.

Elsewhere, following a 34-year career as an internationally renowned artist, touring worldwide, DJ Mark One began to consider the toll that such a lifestyle can take on mental wellbeing.

Mark’s inspiration for using music as a rehabilitation tool came from personal experience caring for a relative, which inspired Mark to utilise his skills as a DJ and education specialist to train and teach others.

DJ Mark One was involved in writing the first accredited DJing exams, as well as the GCSE curriculum for music.

Upon meeting, Dr Penny Trayner and DJ Mark One quickly realised that they had a shared passion for utilising DJing as a vehicle to help people overcome catastrophic injuries and traumatic events in their lives.

Consequently, in July 2019, Dr Penny Trayner’s rehabilitation service, Clinical Neuropsychology Services (CNS), partnered with DJ Mark One to run a weeklong ‘Brain Bootcamp’, for brain injury survivors.

The camp combined cognitive training with real-world application through DJing sessions. This blended approach provided

Mark’s inspiration for using music as a rehabilitation tool came from personal experience

the young people with purposeful rehabilitation that was meaningful and motivational to them as individuals, as well as a social opportunity in which long-lasting friendships were formed.

The ‘Brain Bootcamp’ was a success and provisional outcome measures demonstrated improvements across many higher order cognitions, including resiliency and self-esteem.

Following this triumph, Dr Penny Trayner and DJ Mark One seized the opportunity to pool their resources and established their DJ Training Academy, BPM Rehab in 2022.

In present day, BPM Rehab DJ Training Academy, is a nationwide network of tutors offering music education courses accredited by many notable programmes, including The Associated Board of the Royal Schools of Music (ABRSM), The London College of Music and University of West London. Additionally, the programme is now delivering the AQA Unit award scheme.

The training academy currently offers activities including DJing, singing and music production in; London, Merseyside, Essex, Northampton, Wiltshire, Edinburgh, Hampshire, and Greater Manchester, with aspirations to continue this expansion into new areas.

Attendees begin with a ten-week programme that is finely tailored to the aspirations and needs of the individual. All students are provided with entry level equipment that meets industry standards and exam criteria. There is then the opportunity for students to turn their passion into a career, with guidance through DJing Grades 1, 3 and 5, as well as professional performances at festivals and corporate events.

However, if learners wish to continue DJing recreationally this is also encouraged with full support from the staff at BPM Rehab.

The ethos underpinning all activities is inclusivity and access for all. Therefore, the staff at BPM Rehab can cater sessions to accommodate a variety of accessibility needs including visual impairment, reduced mobility/dexterity and cognitive problems.

This approach has been extremely successful as many students have been with the programme from the very first ‘Brain Bootcamp’, progressing on to achieve their graded music exams.

BPM Rehab is always accepting new learners. For a unique, unforgettable experience, visit bpm.rehab/contact.

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Life-changing settlement for a life-altering brain injury Carrie Burrows, senior associate

Drummond Miller Solicitors has recently secured a multimillion pound settlement for a client on behalf of their partner after a hospital’s failure to diagnose potassium deficiency caused her to suffer a cardiac arrest, resulting in a life-altering brain injury for which she now requires extensive life-long support.

Background The client’s wife was admitted to hospital with a fast pulse, neck stiffness, and a raised temperature. The initial assessment carried out upon her admission showed her to be suffering from dangerously low potassium levels and metabolic alkalosis (elevated PH levels). Her heart’s rhythm was also noted to be irregular.

However, the treating staff either failed to review the results obtained or failed to note their importance. As a result, treatment of these issues was not included within the care plan, and the treatment that was provided was inappropriate in light of a pre-existing health condition. Overnight and as a result of the client’s wife’s issues being left untreated, she suffered cardiac arrest. The cardiac arrest resulted in her brain not being supplied with enough oxygen, causing an irreversible brain injury.

Impact of the brain injury and issues between the parties Carrie Burrows, a senior associate with a number of years of specialist experience handling clinical negligence claims, recognised from the outset that the failures had resulted in life changing injuries and that significant further investigations would be required into not only

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only the potential negligence, but also in relation to the ongoing effects for the client’s wife and what care and support she would need long term.

Despite receiving rehabilitation, the client’s wife was incapable of coherent speech, required assistance with eating and drinking, was fully dependent on assistance to dress, suffered with incontinence issues, and required an attendant-propelled wheelchair to mobilise. As a result of her complex issues, she required care and assistance 24 hours a day 365 days of the year.

Following discharge from inpatient rehabilitation, the client made the decision to become his wife’s carer full time at home to avoid her admission to a care home following her discharge. Despite the need for full time care, only 4 hours of care assistance wasbeing provided weekly, with support otherwise being provided by the family. The hours of care required, together with the lack of economic support and income left the client and his wife in an extremely difficult financial situation.

Focussed investigations and a proactive approach resulted in the earliest possible admission of liability being obtained from the Health Board. This then allowed an interim payment (an initial payment whilst the case progressed) to be secured in order that a care package could be put in place providing the family with the support that they

required whilst investigations into the overall value of the claim could be concluded.

The ability to secure funds at an early stage proved to be essential as the final settlement was not achieved for a further two years: requiring expert reports from thirteen specialities to assist with calculating the value of the claim due in large part to the complex care needs.

Additionally, the legal team were live to the fact that a decision from the Court of Appeal in England was awaited (in the case of Swift v Carpenter [2018]) which was likely to impact the sum that could be recovered for accommodation as a result of the client and his wife requiring to move home. Part of the claim included the cost of moving to a new home because it had become apparent, after a short period following discharge, that the existing accommodation was no longer suitable to meet the complex care needs.

With the final hearing on quantum (value) fast approaching and with expert negotiation and consideration of the losses (such as wage loss, pension loss, support provided by the family, past and future care costs, care

The importance of instructing a legal team that specialises in the handling of clinical negligence claims to guarantee appropriate handling of the complexities that arise in these cases cannot be understated.

management, cost of past and future therapies, cost of equipment, and accommodation costs) Carrie was able to achieve a very successful settlement without the need for a full court hearing on the evidence to allow the family to receive the support they required in the years to come.

Outcome Parties agreed that the multi-million pound settlement should be paid to the client by way of an initial lump sum, with substantial annual period payments thereafter for her lifetime. Drummond Miller also provided assistance in arranging for a Personal Injury Trust to be set up to ensure that the compensation was protected and the client did not lose out on any means-tested benefits she was entitled to as a result of receiving the settlement.

Providing support at one of the most difficult times We know that raising concerns regarding medical treatment and making a claim for compensation can cause further distress in an already stressful situation. That’s why Drummond Miller take a truly human approach by getting to know your individual situation and then being as proactive as possible to help with your needs.

The importance of instructing a legal team that specialises in the handling of clinical negligence claims to guarantee appropriate handling of the complexities that arise in these cases cannot be understated.

We are a team of compassionate individuals who will do our very best to handle your case with the utmost sensitivity and with your specific situation in mind so that we can strive to achieve the best possible outcome for you.

If you believe you may have a claim please complete our enquiry form to speak with one of our experts completely free of charge or visit drummondmiller.co.uk.

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Interview: Living with multiple sclerosis As part of Multiple Sclerosis Awareness Week, we had the opportunity to have a conversation with Sue, the senior clinical training manager at Komplex Care, who was diagnosed with multiple sclerosis last year. Here she talks about her experience living and working with the disease and the impact it has had on her since diagnosis.

Multiple sclerosis (MS) is a neurological disorder that affects millions of people worldwide. In this interview, Sue shares her recent experience with being diagnosed with relapsing-remitting MS, the most common form of MS, and how having a full diagnosis has impacted her understanding of the condition.

Sue was diagnosed with relapsing-remitting MS about a year ago, after experiencing numbness in her legs and difficulty walking. However, she only received a full diagnosis recently, which has provided her with a better understanding of the condition and what to expect.

Sue experiences a range of symptoms associated with relapsing-remitting MS, including fatigue, weakness and difficulties with balance and coordination.

She also experiences tingling sensations and pain in her limbs, as well as cognitive difficulties, such as memory loss and difficulty concentrating. However, she knows that these symptoms may come and go and that she may have periods of remission.

come with her condition, Sue has been able to continue working with the help of her supportive workplace. Sue's employer has been understanding and accommodating, allowing her to make adjustments to her work schedule when needed enabling her to continue working a year on from her diagnosis.

Sue's experience with being diagnosed with relapsing-remitting MS highlights the importance of receiving a full diagnosis and understanding the condition.

While MS can be a challenging and unpredictable condition, there are treatments available that can help manage symptoms and improve quality of life.

It is important for individuals with MS to work closely with their MS nurse to develop a personalised treatment plan that meets their unique needs, enabling them to continue with their lives. It is important for individuals with MS to remember that with proper management, they can continue to live a fulfilling life, pursuing their goals and interests.

Sue's experience highlights the importance of receiving a full diagnosis and understanding the condition Sue's treatment for relapsing-remitting MS includes a combination of medication and lifestyle changes.

She takes medication to help manage her symptoms and prevent relapses, as well as following a healthy diet and exercise regime to help maintain her overall health. Sue has also been able to make necessary adjustments to her daily routine to accommodate her symptoms and improve her overall well-being.

Having a full diagnosis of relapsing-remitting MS has provided Sue with peace of mind and a better understanding of what to expect in the future. While she knows that no two cases are the same, she feels more informed about the condition and how it may impact her life. Sue is incredibly grateful for the support she receives from her employer and colleagues as she manages her MS. Despite the challenges that 38

Sue, senior clinical training manager

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Intensive rehab supports clients to optimise outcomes Having seen the need among many clients for more rehabilitation in a short timeframe, to maximise their gains and support their ongoing progress, Tees Neuro Physiotherapy has launched a range of bespoke packages to increase the support on offer to them

As a specialist in supporting people with all neurological injuries and long-term conditions to rebuild their lives, Tees Neuro Physiotherapy works with clients at all stages of their recovery.

But whether just discharged from a clinical environment, needing support after living in the community for some time, or seeking intervention to help them maintain or improve their independence, the need from many patients for something more than their traditional sessions became increasingly apparent.

“We were delivering a really good quality service with some great progress for clients, but we could see it just wasn’t enough for some.

They needed more,” says Victoria MacGregor, clinical director at Tees Neuro Physiotherapy.

“We want to get the best outcome for clients in the shortest period of time, so we had a look at what we could do to redesign our offering to enable them to achieve that.”

Bespoke packages supported by cutting-edge tech From there came the concept of intensive rehab packages - bespoke

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to every client, it enables clients to maximise their progress through short programmes which would ordinarily take place over several weeks.

Having been launched in January, referrals are already building, with clients coming from across its core referral area of the North East and North Yorkshire, as well as further afield.

The three packages comprise a lower intensity 20-hour programme; a 30-40 hour package; and a high intensity 40-60 hour package. The most intense package receives input from Dr Sohail Salam, a renowned neuro-rehab consultant from nearby James Cook University Hospital, who also supports with its work in spasticity management.

All of the packages enable access to Tees Neuro Physiotherapy’s suite of technology and robotics, which the company has made significant investment in to offer the best possible service - and deliver maximum progress and outcomes - to clients.

The Billingham-based neuro-physio is the only site between Scotland and Leeds to offer the Tyromotion Lexo - as well as being one of a handful of sites in the North to offer

the Fesia Grasp and Fesia walk, which make use of Functional Electrical Stimulation (FES).

“We have invested in quite a lot of technology, and putting that together with our specialist handson skills, there is great potential for clients to make progress with us,” says Victoria.

“Through our intensive packages, they can really make the best of that. Every single package will be different depending on the individual’s needs, but we’ll bring in everything we can to support them as much as possible.

Victoria MacGregor, clinical director at Tees Neuro Physiotherapy.

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“The robotics are very important in rehab now, through maximising repetitions and really supporting our work as therapists, and we are seeing the progress clients are making as a result of using the kit alongside our hands-on work.

“This is a new way of working for us, but are already working so well for clients, both self-referral clients and those who come to us from a solicitor or case manager.”

Jackson, brings specialist expertise in seating, wheeled mobility and posture management - a vital resource to support the client base of Tees Neuro Physiotherapy, many of whom have complex needs.

In-house OT and rehab engineering expertise Since its formation in 2018, Tees Neuro Physiotherapy has built a reputation for its work with adults with a host of conditions, regularly supporting them to achieve progress beyond expectations.

And in addition to its core neuro-physio work, the business also brings in occupational therapy through its relationship with OT Rehab North East.

As a clinical associate, OT Rehab North East, founded by Amanda

And further supporting the business in delivering mobility and postural support to clients is Martin Hirst, an engineer who delivers a bespoke engineering service for Tees Neuro Physiotherapy and OT Rehab North East, and is able to modify products to client specification.

“I think the addition of both of these services to a neuro-physio practice is quite unique, really,” says Victoria.

“Amanda and I worked together in the NHS, we’ve worked together for the best part of 20 years now, and know how working together can really

All of the packages enable access to Tees Neuro Physiotherapy’s suite of technology and robotics

complement what we can deliver.

When we moved into the independent sector, we realised we were totally missing ‘a Martin’ - his work with clients in making the modifications they needed was fantastic.

“Thankfully, we are working together again, and Martin specialises in products such as bespoke adjustments for powered wheelchairs, innovations in seating, even bespoke computer chairs for clients or creating footplates for wheelchairs.

“Both Amanda and Martin’s expertise works really well in what we can deliver, and is very important as part of the intensive rehab packages too.

When we’re working with quite complex clients who maybe have complex posture needs, something off-theshelf just doesn’t work for them.

“By being able to offer the rehab engineering service, as well as being able to refer to Amanda, we are delivering a really comprehensive offering to our clients and supporting them beyond the core neuro-physio work.” teesneurophysiotherapy.com.

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‘Cauda Equina Syndrome is serious - treat it as such’ Through significant delay in the diagnosis and treatment of Cauda Equina Syndrome (CES), Anne now lives with a host of lifelong consequences - and was told by surgeons she avoided being left paralysed by a matter of hours. Here, we find out why Anne believes greater awareness of CES - among medics and the general population alike - is essential, and how the devastating condition should never be regarded as ‘just a bad back’ “I was in so much pain, excruciating pain, worse than the pain of having my children. But time and time again, I wasn’t treated as a priority and I just had to get on with it.”

Anne’s experience of Cauda Equina Syndrome and the lack of recognition of her condition and its severity is truly shocking.

Having consulted her GP and been told to take over-the-counter medication for a bad back, Anne was rushed by ambulance to hospital and given morphine for her pain, only to be sent home by a doctor and told to rest. After being told she would be given an MRI scan, only to find out it was in fact a physiotherapy appointment for a bad back, there was a subsequent delay in surgery once finally admitted.

The consequences Anne now lives with are many - bowel and bladder dysfunction, total numbness around the pelvic area, loss of sexual function, neuropathic pain, leg weakness, as well as the fact she

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can no longer work, and has developed Post Traumatic Stress Disorder (PTSD). At one point, Anne was left feeling suicidal.

Anne’s situation shows what can happen as a result of the lack of action by medics to properly treat CES - a condition which occurs when nerve roots in the lumbar spine are compressed. Urgent treatment is essential to preserve many aspects of a person’s movement and independence.

“My life has been ruined and I’m not going to get it back. And all of this because I wasn’t listened to or taken seriously,” Anne tells NR Times.

“Things have to change in how we regard CES. "For doctors, they shouldn’t just think people have a bad back and that’s all it is - they should start at CES and eliminate that first.

"If they’d done that with me, I wouldn’t be in anything like the situation I am now.

“And for society in general, I want people to know about CES, what the red flags are, what to do if you think

you may have CES. "If there is better awareness, then people will be able to fight harder and challenge what they’ve been told in ways that I couldn’t.

“I wish so much I knew then what I know now - but if we can change things for other people, then at least some good has come out of what I continue to go through every day of my life.”

Lack of CES recognition The ordeal for Anne, then aged 47, began when she began to experience some pain and discomfort in her back.

“It wasn’t a bad back, it wasn’t the kind of discomfort where you’d pulled a muscle doing the gardening, this was different.

"You know your own body and this just didn’t feel right,” she recalls.

Having been sent away with some over-the-counter pain relief, Anne continued to battle the pain for the next two weeks, juggling her busy working and family lives while experiencing constant discomfort -

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the fact it was supposedly ‘nothing serious’.

However, one night the pain became agony - “it was like a bolt of lightning through my back,” remembers Anne - and she had to call an ambulance after being struck down by the pain while home alone.

“I was screaming, it was absolutely awful. I’d been taking painkillers like Smarties before that, trying to get better and not overreact, but then suddenly the pain was unbearable,” says Anne.

“I couldn’t walk, so the ambulance men helped me down the stairs - it was only when I came to put my shoes on that I realised I could no longer feel my foot.

“I was in so much pain in the ambulance that they gave me morphine.

But when I arrived at the hospital and saw the doctor, he didn’t listen to me and told me to continue to take the painkillers and go home.

“I saw the ambulance men in the corridor as I was leaving and they genuinely couldn’t believe I was being sent home. But the doctor had

given me his professional opinion, and I had to trust that.

“CES was never mentioned, it wasn’t even something I’d heard of. I know now that literature exists to highlight the ‘red flag’ symptoms - if I was given that, I’d have been straight back to the hospital.”

Delay in treatment After spending the weekend in agony, Anne visited her GP surgery again, but this time was referred for a scan by a doctor who raised concerns over CES for the first time.

But despite the recognition by the GP, this was not acted on upon referral to the hospital.

The promised ‘urgent’ call to book an MRI scan came 24 hours later, and her appointment - deemed ‘non urgent’ - was not scheduled for a further 48 hours.

When she arrived at the hospital for the promised scan, it emerged she was actually visiting a physiotherapist - but thankfully, on this occasion, CES was recognised.

“I was clearly being referred through

the pathway for someone who has a bad back, nothing about this was regarded as an emergency until I saw the physio,” says Anne.

“I was so fortunate to see someone who did know about CES, she knew instantly there was something wrong.

I still thank God for her.

"She was the first person to show me the picture of the spine with the red flags - and straight away, I knew tha t was what I had.

“She arranged for me to have an MRI scan straight away, and within two hours I had a phone call saying I needed emergency surgery.

"I couldn’t believe what I was hearing, I was in total shock.”

Having arrived at hospital as she was told to do, although a lack of availability at a specialist spinal centre meant she was on a general ward, staff were clearly not expecting Anne.

“I had to explain what had happened, why I’d been sent, they knew nothing about it.

"I was in a ward with elderly people for over 24 hours before I

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where I was told I’d have my surgery,” she says.

Anne was given her own room and told to prepare for surgery imminently - but 48 hours later, she had still not undergone the operation which was so essential to her future health and independence.

“They said so many times they’d be coming for me and they never did.

I was nil by mouth, waiting for my operation, only to be told it was too late now, it must be tomorrow. I was told there weren’t enough staff to open the operating theatre - but even at this point, I still didn’t know how urgent it was that I had this surgery,” she says.

“It was only when my consultant who was absolutely fantastic and went on to support me for a long time after the operation - told me I was hours away from being paralysed that I realised this was very serious.

“I found out that the operating theatre had in fact been opened during the time I’d been waiting, for surgery on someone who had been stabbed.

I appreciate that is life or death - but is the prospect of someone facing paralysis not important?”

The need for change Having had no knowledge of CES, Anne was shocked to discover the lack of awareness of CES - and particularly its severity - among the medical teams too.

While it took a number of medical interventions for CES to be recognised, the further delay with surgery showed Anne that its life-changing impact is still not fully appreciated.

“If you mention you’ve got pain in your back, then it’s regarded as being a ‘bad back’, so a slipped disc or pulled muscle.

"But CES couldn’t be further away from that,” says Anne.

“This is too important in people’s lives to get wrong.

"The pain I have all of the time is horrendous, people can’t understand how bad it is, and that’s on top of all of the other things I’ve been left with. I’ve lost a lot of friends, I don’t socialise anymore.

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"This has genuinely ruined the life I had.

“If CES had been recognised so much earlier, I could have had a much better quality of life. But I wasn’t listened to. I didn’t feel I had a voice and felt totally overlooked.”

Anne hopes greater awareness of CES among medics will lead to change in how patients displaying the red flags are approached.

“I’d like to see CES as a starting point. If someone comes in with back pain, ask about the other CES symptoms, rule them out first,” says Anne.

“It is surely far better for the person, and for the NHS, if doctors take the time to find out whether this really is a serious condition and then do something about it quicker, rather than just dismissing people and telling them to take painkillers for a supposed bad back.

"They need to listen to people and their genuine concerns.

“There have to be lessons learned from this, and for CES to be taken seriously, so people aren’t dismissed like I was.”

More general awareness is also important in change being able to happen, she says.

“With hindsight, I think why didn’t I ask more questions, why didn’t I keep going back, why didn’t I refuse to let them send me home - but all I can do is hopefully help to change things for other people,” says Anne.

“If people knew the red flags, if they knew was CES is, then they can recognise it themselves.

"The symptoms are so different to a bad back, and the pain is so bad, that no doctor could tell them this wasn’t what they had. You know your own body and you know when something is badly wrong.

“CES needs to be more widely known about, so that people know the symptoms and seek medical attention immediately. It is not something that can wait.”

The support of specialist lawyers Anne turned to Slater and Gordon law firm for support in making a claim against the hospital for its failure to

recognise CES and give treatment urgently enough.

Having gone through her ordeal in 2015, it took until 2022 for Anne’s case to settle, with medical negligence experts fighting on her behalf to secure a £500,000 settlement for her ongoing care requirements.

Lara Bennett, senior associate at Slater and Gordon, settled the claim for Anne.

In addition to enabling her client to access bespoke therapies to support her physical and psychological needs, she was also able to secure an interim payment to support Anne and her family during the long-running claim process.

“What happened was totally unacceptable and wholly avoidable.

"I think that’s what makes it all the more devastating, that this was so needless. If CES had been recognised earlier, Anne wouldn’t be left with the lifelong consequences she has been,” says Lara.

“It is awful to see the missed opportunities in this case, and if urgent action had been taken, it could have ensured the outcome for Anne was very different. There is no excuse for the failings here and lessons must be learned.

“CES is an absolutely devastating condition, and its impact can be seen in this case. This has been totally life-changing for Anne.

"Physically, psychologically, emotionally and practically, Anne has suffered greatly - and in addition, she has had to move out of the home she loved into a new property which is more suited to her needs, and she can no longer work.

“We echo and fully support Anne’s desire for change to happen in how CES is regarded, particularly within the medical profession. Patients have a voice and deserve to be listened to - CES is not a bad back and should never be treated as such.

“CES must be given recognition as the life-changing condition it is by every medical professional - its consequences are too devastating for that not to happen."

To find out more, visit slatergordon.co.uk

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Where trauma and inclusive support fill a crucial gap in provision - Led by Dr Shabnam Berry-Khan PsychWorks Associates is the UK’s only Treating Psychology and Rehabilitation Case Management service. With more than 20 Associates and 15 languages, we are uniquely placed to support your injured clients’ rehabilitation journey using trauma-informed interventions.

At the heart of our service are our six core values. They represent the foundation upon which we build our support and they shape what we do and how we do it. PsychWorks Associates embodies Compassion, Respect, Equity, Acceptance, Trust and Environment (CREATE) in all its work.

Being kept fully informed by proactive clinicians informed by proactive clinicians with a system that means you do not have to chase us.

Creative, flexible and comprehensive support where carbon-offset home visits and effective liaison is built into our timetables so we always offer efficient, timely and thoughtful input.

Working with the most suitable clinicians who are litigation-aware and traumainformed, with specialist skills of working with the individual, family or professional network.

Use a unique case conceptualisation approach to support your client, all our clinicians can facilitate therapy and care teams to be greater than the sum of its parts.

Culturally-aware practises for diverse clients who will benefit from representation in their professional team.

A collaborative, creative and integrative approach to emotional and physical rehabilitation

Shabnam is professional, responsive, practical and kind. She heads up a very effective team and her expertise in psychology adds particular value in clinical negligence matters.

Angharad Vaughan, Partner, Leigh Day

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Night workers what employers need to know about them Cecily Lalloo, MD of Embrace HR, independent specialist provider to the complex care sector, discusses how to properly support night workers in their roles, to protect their own wellbeing while enabling them to deliver the best possible care to those who need it

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Night work is commonplace in all

aspects of healthcare, and is essential in delivering the care that is needed to people recovering from life-changing injury or in supporting them with ongoing complex needs.

And while this is an accepted and necessary way of working in care, to provide a 24-hour continuous service, the potential impact on health and safety must not be lost by employers of those workers tasked with delivering care.

Employers have to ensure they comply with legislation in this area, to prevent fatigue, burnout and illness arising from employees who are not properly supported.

Risk assessments must be carried out as employers have a legal duty to assess the risks to the health and safety of employees (and risks to the health and safety of persons not in their employment) to which they are exposed while they are at work.

In the UK the Working Time Regulations 1998 sets out maximum working time which must be - supported by efficient management of employees, to ensure night workers can achieve acceptable levels of sleep and rest, despite the disruption to their circadian rhythms, and protect their health and wellbeing.

Here, we look at some of the main issues employers need to consider.

Risks for night workers For people who work nights, or those who work unsociable or very long shifts, these hours are at odds with the more accepted working patterns of working during the day.

Our circadian rhythm, which expects we will be awake during the day and sleep at night, can be disrupted by night work - and sleep is essential to mental and physical restoration to enable us to work effectively.

It allows the body to recover from physical or cognitive activities and helps to protect against fatigue and anxiety. However, for those working during the night, this is something that is less easy to achieve, and can lead to illness or the exacerbation of existing conditions.

Chronic fatigue resulting from night work is associated with conditions including chronic gastritis, peptic ulcers and cardiovascular illnesses such as hypertension and coronary heart disease.

A UCL study found that working more than 11 hours places a person at a 67 per cent higher risk of developing heart disease compared with those who work a typical seven or eight hour day. Furthermore, fatigue or poor sleep can lead to a greater risk of errors or accidents, which could be of huge consequence when caring for individuals with acute needs.

Legislation supports night workers in being able to access regular medical checks, and if a night worker becomes ill and there is clear evidence to link their symptoms with night work, the employer must reassign the worker to other duties.

Workers are better supported to do their jobs and deliver the often life-saving care that is needed But in helping to reduce the chances of workers becoming ill or their wellbeing being compromised, employers can take pre-emptive steps in protecting workforce and their wellbeing. Risk assessments are a key part of that, and can ensure the workers tasked with delivering care are able to properly protect those they are supporting.

Risk assessments By properly managing risks and identifying the hazards of night work and helping to mitigate them, workers are better supported to do their jobs and deliver the often life-saving care that is needed. Employers must commit to addressing risks and protecting the safety, health and wellbeing of workers - which, as well as being best practice, can also help reduce sickness and absence, reduce staff

turnover, reduce errors and accidents and increase productivity.

Night works should be offered an annual night workers assessment.

A four stage process should be implemented: 1. Establish a system to manage the risks 2. Assess the risks in your workplace 3. Take action to reduce the risks 4. Review arrangements regularly.

A person must be appointed within the organisation to oversee this, and it is vital that workers are consulted and involved in any decisions about shift work.

Factors including fatigue should be prominent in a risk assessment, as well as other aspects which we know affect healthcare workers such as workload, work activity, duration of shifts, rest breaks within and between shifts, mental and physical demands and welfare.

Risk groups among night workers such as pregnant workers, younger and older workers, those with existing health conditions and new and temporary workers - should have their particular circumstances taken into account.

Monitor and review Implementing the four step risk assessment process will reduce the likelihood of potential problems, but cannot always prevent them - which is why workers should be encouraged to report any problems as soon as possible.

Supervisors have a role in identifying and reporting problems and if workers are concerned about their personal health, they should be encouraged to visit their GP. Sometimes it will be necessary for the business to alter the shift schedule or make changes to the work environment. In this case, workers should be consulted in advance on the proposed changes.

While these changes may bring about improvements, they may also create problems, so monitoring any arrangements in place, to ensure they are working for everyone involved, is hugely important.

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In any event, arrangements for night or shift workers should be reviewed periodically, to ensure their effectiveness.

Good practice recommendations While carrying out robust risk assessments and implementing their findings will help the unique features of every business and every care situation, generally there are a number of approaches employers can take to support the wellbeing of their team.

Clearly every situation and business is different, and this may not be appropriate in every one; while it is not legally binding to take such steps, it can be advisable if appropriate to demonstrate the implementation of good practice.

•

•

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Plan a workload that is appropriate to the length and timing of the shift Schedule a variety of tasks to be completed during the shift to

allow workers some choice about the order in which they are done •

•

•

Avoid scheduling demanding, dangerous, monotonous and/or safety critical work towards the end of night shifts Avoid placing workers on permanent night shifts, and if possible offer a choice between regular and rotating shift schedules Where possible, arrange shift start/end times to be convenient for public transport or consider providing transport for workers on particular shifts

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Limit shifts to a maximum of 12 hours (including overtime)

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Consider if shifts of a variable length or flexible start/end times could offer a suitable compromise

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Allow workers some discretion over when they take a break where possible, but discourage saving break time to leave work earlier

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Try to limit consecutive working days to a maximum of five to seven days and ensure there is adequate rest time between successive shifts

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Ensure supervisors and team members with responsibility for shift working arrangements are aware of the risks of night work and can recognise problems caused by this

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Provide training and information to workers, management and supervisors on the risks associated with night work and on coping strategies. www.embracehr.co.uk

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MORE REPS SHORTER TIMESPAN BETTER RESULTS

SPEED UP THE RECOVERY PROCESS WITH HANDS-ON REHABILITATION COMBINED WITH STATE-OF-THE-ART NEUROTECHNOLOGY

Intensive Rehabilitation Packages at Hobbs Rehabilitation The development of assistive neurotechnology and robotics has allowed clinicians to significantly increase the number of repetitions achieved during sessions and improve patient outcomes when therapy is given over a shorter period of time. Working intensively, neuroplastic changes in the brain occur much quicker than with conventional therapy alone and positive changes are seen within weeks.

Whether treating a long-term condition such as

multiple sclerosis, the effects of a stroke, spinal cord or brain injury, our inpatient and outpatient intensive rehabilitation packages are designed to promote more independence and ultimately reduce care costs.

Our high-intensity neurotherapy packages consist of a minimum period of 2 weeks (minimum 10 hours) of interdisciplinary therapy input per week – typically packages range from 40 to 80 hours over a four-to-eight-week period.

These services are available at the following Hobbs Rehabilitation centres: • Winchester • South East (Liss) • Blenheim Court (Liss)*

• Intensive Neurotherapy Centre (Bristol)** • Oaksey House (Lambourn)**

*Inpatient **Inpatient & Outpatient

For more information and to register for a pre-assessment, please call us or complete the form at: www.hobbsrehabilitation.co.uk/contact 01962 779796 www.hobbsrehabilitation.co.uk 49

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Financing early treatment for accident victims with neurological injuries Although the Rehabilitation Code is a vital tool for lawyers fighting for neurologically injured clients, since it provides a key avenue for obtaining early and potentially life altering interventions, nevertheless, much more needs to be done to ensure that it is an effective option for all those who could benefit.

The Code is a voluntary initiative for personal injury legal claims, first published in 2007 and most recently updated in 2015. Its purpose is to help claimants get treatment they need to enable the best and speediest medical, social and psychological recovery.

Accordingly, the Code is of particular significance to those with serious neurological injuries, as these often benefit considerably from early intervention.

With long waiting lists and limitations on innovative treatments offered by the NHS, private rehabilitation services can be hugely positive for such claimants.

The purpose of the Code is to assist both the claimant and defendant. The claimant can access rehabilitation more swiftly, often providing a better

chance of a good recovery, and the defendant may, as a result, pay less in compensation. Despite this, in my experience with the Code in action, outcomes can at times be mixed.

The Code requires that claimant and defendant lawyers collaborate to address the injured party’s needs from first notification of a legal claim. In the case of a serious neurological injury, it sets out that any assessment of needs must be by a rehabilitation professional or case manager, who should carry out an immediate needs assessment (INA) and produce a full report detailing recommendations. This will usually be paid for by the defendant, who must then consider whether they will fund any or all of those recommendations.

The Code makes clear that any private care should be arranged, wherever possible, in liaison with a claimant’s current medical team to avoid causing any problems with existing treatment.

The Code establishes that a claimant’s need for rehabilitation should be addressed as a priority, whether liability in

the claim has been agreed or not. In the normal course, where there has been an admission of liability, the Courts can order an interim payment of damages.

However, this process is not always practicable, quick or indeed the most cost-effective approach and using the Code can allow specialist treatment to be commenced more speedily.

Yet, where liability has not been conceded, the situation becomes much more problematic.

The Code clearly states that, irrespective of there being no agreement on liability, the health and economic benefits of early rehabilitation, where severe injuries have been suffered, can be especially strong.

Nevertheless, defendants inevitably have concerns about paying for rehabilitation in this scenario since, under the Code, if a claimant eventually loses their case they would not be bound to repay any funding. For neurological injuries, rehabilitation interventions are often extremely expensive. They may include a period of in-patient care and input from disciplines including occupational therapy, speech and language therapy, physiotherapy and psychological therapy.

Nonetheless, where a defendant’s case is by no means strong and no admission has been made, it can be short sighted to ignore the Code. For, in my experience, where a pragmatic approach is taken in the absence of an agreement on liability, this almost always leads to a positive outcome for both parties, with a swifter settlement and significant costs savings as a result.

My team at Kingsley Napley are

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experts in obtaining the best rehabilitation outcomes for our neurologically injured clients and we seek to use the Code whenever possible generally with excellent outcomes. However, there are arguably insufficient incentives for defendants in all cases to engage.

The Code is linked to the Pre-Action Protocols for both Personal Injury Claims and Clinical Disputes which set out certain principles with which parties to a legal claim are expected to comply before formal court proceedings are issued.

For neurological injuries, rehab interventions are often extremely expensive

The Protocols are not legally binding but non-compliance with aspects of them can lead to financial consequences, for example, having to pay more in legal costs to the other party. Despite this, a recent judgement (Andrew Evans v R&G Allgemeine Verischerung AG [2022]) concluded that a failure to comply with the Rehabilitation Code did not mean that the defendant should face penalising cost consequences (indemnity costs). While I understand the lines are difficult to draw here, I hope that this issue will be revisited and re considered by the courts as soon possible.

For cases of medical negligence, it is my experience that NHS Resolution, the body dealing with clinical claims on behalf of the NHS, and indeed many other indemnifiers in this field, do not fund early rehabilitation in the absence of liability being admitted. While the Code itself references ‘personal injury claims’, the Protocol for clinical cases refers to the Code and is clear that early rehabilitation should be considered. Nonetheless, as matters stand for

victims of medical accidents, access to the Code and to early rehabilitation is very underutilised. I have had significant success with the Code in personal injury claims and it is my view that the Code needs to be made mandatory in medical negligence cases. Clarity is required on the scope of the Code to achieve this.

I am also aware that there are suggested abuses of process where INA reports have been obtained and then no agreement to fund any recommendations has been forthcoming or have been very delayed. It also appears that on occasions the INA report has been used to help the defendant value the claim or to inform a premature offer of settlement rather than to genuinely assist early rehabilitation.

There is no doubt in my mind that the Code should be championed wherever possible and defendants reminded at the outset of claims of their obligation to consider this empathetic route which can be so life enhancing for those needing to fight for compensation.

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How LusioMATE is redefining rehab

The Mission For the past four years the team at Lusio Rehab have been on a mission to redraw the boundaries and rehabilitation potential for people living with neurological conditions and injuries through their innovative rehabilitation technology.

LusioMATE, an app-based physical therapy ecosystem that utilises wearable sensors, was launched by Lusio Rehab in 2018. The combination of their drive to develop and provide the most engaging and usable technology, with a business culture that places human interactions and relationships with its user community as paramount, has led 52

to rocketing demand for LusioMATE globally, with some exciting developments locally in the UK. LusioMATE uses fun in-app exergames to motivate and engage patients during their treatment.

The wearable sensors attach to any part of the body and connect to the LusioMATE app via Bluetooth.

Patients can then play a variety of exergames tailored to their specific needs, which not only makes the therapy process more enjoyable but also helps to improve adherence and ultimately, treatment outcomes.

“Everything that we live and breathe within Lusio Rehab is purely focused on our core mission,

which is to help people move and engage with their rehab in a way that is as much fun as possible, and make it as easy as possible to do that so we can help them do more” says Jamie Borg, Lusio Rehab’s Europe and Middle East region manager.

“And that really comes from the everyday stories of success that we hear from our user communities, both from clinicians and the users directly. We are probably unique as a medical device manufacturer in the extent of our deep and ongoing relationships with our user communities. We get to hear first-hand about the impact that LusioMATE has and this in turn drives every

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single part of our business including product development, how we communicate and how we support and continue to support our users in the short, medium and long term” That organic, real and human culture has clearly worked for Lusio Rehab and their user community. “The feedback that we get from our users is that they love LusioMATE. They love how easy it is to use, how portable it is, how it can be used on any part of the body or on everyday items like cups or cutlery,” says Jamie.

“Crucially they love how open and accessible we make using LusioMATE. For example, we don’t limit certain games to certain movements. If you love one game you could do all of your movement goals in one game if you like.

Also things like allowing others such as family members to use LusioMATE. We have some users who have a ‘Pizza and LusioMATE Night’ with the family!

Imagine the impact that will have on their rehabilitation! That pleasure and fun from moving. Especially when we know from the evidence that most people don’t engage with rehab. We just get completely blown away when we hear these stories” explains Jamie.

For neuro rehabilitation patients, LusioMATE offers a wide range of benefits.

The app provides real-time feedback on the patient's movements, helping them to track their progress and make adjustments as needed. Movements as small as a few millimetres can be picked up by the wearable sensors meaning that even patients with extremely limited mobility can benefit from LusioMATE, as the app can be used for both gross and fine motor exercises.

LusioMATE's versatility is another key advantage for neuro rehabilitation patients. The app is available for all Apple and Android devices making it accessible for patients to use at home or on the go, anytime, anywhere. This is especially beneficial for patients who may have difficulty travelling to and from appointments, or who live in remote areas with limited access to rehabilitation services.

What stands LusioMATE apart from a rehabilitation perspective is its ability to be easily adopted at any point in the rehabilitation pathway, for use on any part of the body and in conjunction with everyday items like cutlery or pens. This

LusioMATE provides realtime feedback on the patient's movements, helping them to track their progress and make adjustments as needed has seen a big increase in demand from stroke rehab service providers.

“The ability for rehabilitation settings to be monitored and easily adjusted between face to face therapist sessions is something that can have a huge impact on outcomes, especially in those first few months. LusioMATE is so easy to use and we can help stroke service providers easily increase the amount of rehab their patients do without increasing their human resource costs” Jamie says.

“Also, providing patients with a LusioMATE early in their stroke rehab, that can follow them out into the community and their home rehab setting, is where LusioMATE really comes into its own.

Users have a tool they are familiar with and really comfortable using, so they become more self managing in their rehab, as well as motivated to do more of it. In this way we are able to support the community rehab and Early Supported Discharge teams to provide rehab that can be monitored remotely, and that real-time data, on goal achievement and function, are available at the touch of a button.”

The versatility of LusioMATE’s potential for application means that a wide range of healthcare providers have already adopted LusioMATE, or are in the process of doing so.

“Although LusioMATE was initially developed for children with Cerebral Palsy, to use at home for their ongoing rehab and physical therapy needs,, we are now helping people with their neurorehabilitation across a range of settings. Physio and OT clinics, hospitals, acute stroke units, intensive care units and community residential settings are all coming on board. One example is a recent pilot with Leonard Cheshire Charity where the residents loved LusioMATE and as part of Leonard Cheshire’s assistive technology programme, LusioMATE will now be rolled out to a number of other centres,” Jamie explains.

2023 marked the start of an exciting new chapter for the Lusio Rehab team with CE marking completed, and they have already entered into discussions with a range of European and Middle Eastern healthcare providers and potential commercial partners. With FDA approval almost complete, the Lusio Rehab mission to help people achieve their true neurorehabilitation potential by making physical therapy something engaging and fun is most certainly gathering pace. lusiorehab.com 53

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New look community rehabilitation service to provide support to children with acquired brain injury T

he Children’s Trust has transformed the way in which it delivers community brain injury rehabilitation.

The newly formed, innovative Community Rehabilitation Service offers online information and resources, as well as support to children, young people and families through a nation-wide virtual acquired brain injury team. In addition, the team offers an intensive, hands-on therapy service to children and young people living in the south-east, alongside virtual hybrid packages of support for those further afield.

The new look Community Rehabilitation Service will provide a range of support across a tiered model, with increasing levels of support based on the level of need and identified goals. This model is illustrated in the graph opposite.

Bumps Happen offers parents, families and professionals information and advice to support a child’s recovery and return to activity following a concussion. The aim is to ensure that families can access information in a timely manner.

New posters and leaflets are designed to be available in clinical settings such as medical waiting rooms with an easily accessible QR code.

Tier 1 – Digital Information: Bumps Happen Bumps Happen is split into 8 different information modules. Each of these deliver information at different stages of the recovery journey, covering advice in the immediate aftermath of a head injury, through to the days and weeks that follow.

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The website is designed to be self-service, meaning users should be able to get the information they require without needing to interact with a clinician.

The site also has a dedicated chat bot feature.

Curated by a fictional head injury specialist, Zoe, she guides users to the information they require via a series of simple multiple-choice questions.

This works particularly well on mobile devices, and although it serves the same information as the main website, the content is delivered in smaller bitesize chunks.

If users still feel they need to speak with a member of our team, they can submit a short contact form.

Bumps Happen can be accessed via www.thechildrenstrust.org.uk/ bumps-happen Tier 2 – Virtual ABI Team The Children’s Trust’s Virtual ABI Team provide a free, goal-directed digital rehabilitation support service for children, young people and families

living with acquired brain injury across the UK. Referrals are accepted from parents, families, and professionals.

Support offered is directed by clinical need; families will be invited to join a virtual goal setting meeting where a plan is established to set meaningful participation-based goals.

Specific advice, signposting and consultation can also be provided by one of our clinicians.

The service model promotes and encourages self-management of needs in the long-term, however it is anticipated families may need a number of intervention periods in the years that follow their child’s initial injury, due to the lifelong developing nature of acquired brain injury.

The team offer coaching and guidance to young people, their families, and others in their network to help them work towards their goals.

It is recognised that some goals may be long-term in nature and the team will therefore aim to identify short term goals that can be addressed within the service offer that may be a stepping

stone towards achieving longer-term goals.

The Virtual ABI clinicians also offer a long-term register which offers support and follow-up to children with acquired brain injury at key educational transition points, in view of the possibility of emerging needs as a child gets older, and the changing expectations of school stages.

Support is offered when a child enters reception age, secondary and post 16 education.

The service will work flexibly to support families to access a virtual service if digital support is required.

For further information or to make a referral, the Virtual ABI Team can be contacted on: tctcommunity@thechildrenstrust.org.uk Tier 3 – Community rehabilitation The Children’s Trust Community Rehabilitation Team covers the SouthEast of England providing specialist assessment and goal-directed intensive rehabilitation for children and young people living with acquired brain injury or neurodisability.

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Rehabilitation is functional and context-based to address areas impacted by the child’s brain injury, including but not limited to: • mobility • self-care • cognition • communication • emotional wellbeing • return to education • leisure activities, hobbies and family life • friendships.

Intervention is holistic and focused on activities that are relevant and meaningful to the child, and delivered in the most appropriate setting which may include the child’s home, in school or in the community.

Outpatient therapy at The Children’s Trust is also available, enabling access to on-site facilities such as aquatic therapy and robotics.

Specialist assessment will be offered when there is a gap in local provision and outcomes of the assessment will support the child’s ongoing

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rehabilitation and participation in activities within their own environments. This can include delivery in a hybrid/virtual way.

There is evidence that neurorehabilitation is most effectively delivered by a coordinated team of professionals from the relevant disciplines.

Where clinically appropriate, the service will take an interdisciplinary approach.

This means the team works together in a co-ordinated way towards an agreed set of goals to assist the child to reintegrate into school, achieve their desired level of independence and enable their participation in chosen activities and ultimately in society.

Some other aspects of service delivery may require a different approach i.e. when therapy requirement is from one discipline.

Core specialisms offered include: • Psychology • Speech & Language therapy

• Physiotherapy • Occupational therapy • Rehabilitation technician.

Delivery is in collaboration with the child’s local community services where possible and is subject to funding.

Funding is typically secured via the child’s Integrated Care Board, although self-pay and private funding is accepted.

Intervention can be provided at any stage in a child’s rehabilitation journey post the acute phase, including support to children who are many years post injury.

For further information or to make a referral please contact The Children’s Trust dedicated Placements Team by emailing placements@ thechildrenstrust.org.uk or calling 01737 365 080.

For further into on The Children’s Trust Community Rehabilitation Service, please visit www.thechildrenstrust.org.uk

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Rebuilding lives and creating futures QEF’s Care and Rehabilitation Centre provides expert neuro rehabilitation and 24/7 nursing care; supporting people to rebuild core skills after an acquired brain injury, stroke, incomplete spinal injury or neurological illness.

We provide person-centred, holistic therapy and care and work closely with the NHS, case managers, families and everyone involved with an individual’s neuro rehabilitation.

Contact us to find out more Tel: 01372 84 1111 Email: neurorehab@qef.org.uk Web: www.qef.org.uk/CRC_professionals

Watch our virtual tour and meet the team at qef.org.uk/CRC_virtualtour

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ADHD & acquired brain injury Natalie Mackenzie, director at BIS Services, on the need for a deeper understanding of the relationship between the two conditions.

Over the past few years, we have received an increasing number of referrals for clients with severe TBI, who upon assessment, display several 'classic' ADHD symptoms and traits.

Of course, the dysexecutive nature of TBI mimics that of the ADHD brain and behaviour. Are they symptoms ADHD or an indication of frontal damage.

Are both at play? Is there a pre morbid diagnoses of ADHD or ADD, or similar co morbidities? What says the historical assessment of school and childhood behaviour?

How do we know what is causing the attention deficits and executive functioning errors?

Does it matter? No. Do we approach the client with the same techniques as 'classic' TBI deficits or 'classic' ADHD interventions?

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No. Why? The same reason as always, each brain is unique.

Each individual is unique. Each brain injury is unique. Each ADHD brain is unique.

There is a specialism in understanding the additional challenges that a co-existing diagnoses of these two brings. An understanding of why the usual tools might not be up to the job in hand. Here at BIS however, we have the exact combination needed. Almost 20 years experience in brain injury rehabilitation, including neurodiverse clients, coupled with formal training as a certified ADHD life coach. Alongside a talented pool of cognitive rehabilitation assistants who have personally and professionally experienced neurodiversity. The perfect mix.

I embarked upon a year’s international training as an ADHD life

coach, simply to ensure that there was no stone left unturned, as it were, when determining the input that our diverse clients need.

I had studied neurodiversity and ADHD and other conditions before, but not a deep dive into it, from a very different perspective.

The training undertaken in motivational interviewing over the years has always proved a very useful tool and approach, and I felt it would complement the coaching approach well, with many overlapping similarities in terms of client led conversations.

What I wasn’t expecting, and what I have not experienced in any of my formal training to date, was being in a cohort of nearly 90 per cent neurodiverse individuals, many of whom diagnosed later in life, being sidelined or mistaken as lacking motivation, naughty or (my biggest

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gripe), non-compliant. Their insights were invaluable. As luck would have it also, the principal had a son with ADHD and had sustained a TBI in earlier life, a fellow student with a father with the same, and another with another child with ADHD and multiple concussions.

What was even more striking, was them embarking on their own self-discovery through our discussions, that their loved ones were displaying some similar challenges in addition to their ADHD, which were being ‘missed’ or side-lined, but that were a significant difference due to their brain injuries.

For these families, on the patient side of the model, they soon felt that the ADHD had worsened, was exacerbated, and made more complicated by the TBI, but that the presence of the ADHD led to medical professionals dismissing the cognitive impacts of subsequent TBIs and vice versa.

This was particularly prevalent with the multiple concussions “Oh, she has ADHD, the mTBI hasn’t affected their cognition.”

Families are frustrated, and the understanding of both diagnoses is greatly lacking in both the neuro-rehab and ADHD fields.

That’s not to say this is a purposeful lack of interest, but simply there doesn’t seem to be much in the way of an evidence base to support the required specialist interventions needed. When one embarks upon a research drive regarding the prevalence of ABI and ADHD, you are met with a very swiftly delivered list of search results that state things along the lines of “Brain injury as a cause of ADHD” or “ADHD increases risk of brain injury” or similar.

The evidence base to support specialist ADHD / ABI interventions is lacking

What we do not find much of, if anything, without extensive research, is the impact of a brain injury on a pre-existing ADHD diagnoses and vice versa. Any incidence seems to get mixed together in one big muddle, with an even more troubling medley of reasons of why the risk-taking behaviour of ADHD results being a precursor for brain injury. My interest in the topic led me to further discussion at the international ADHD conference in Dallas last autumn, presenting "ADHD and Brain injury: Rare unicorns, or the missing piece”.

Do not write these individuals off in their desire to maintain change I hope to travel to Baltimore again this year to present on this further.

Research findings whilst I was preparing predominantly favoured studies of children with ABI and secondary ADHD diagnoses, adult populations were scant. My presented piece cites a number of findings, that are too extensive for this piece, but some notable findings include: Attention-deficit/hyperactivity disorder secondary to traumatic brain injury (ADHD/TBI) is one of the most common neurobehavioral consequences of TBI, occurring in 20 per cent to 50 per cent of individuals post-injury. This again highlights the need for further investigation of client history, the majority of my clients had no pre-injury diagnoses.

TBI could result in psycho-neurological changes that increase the chances of ADHD developing. Others have hypothesized that having ADHD could increase an individual’s risk of falling or having an accident that could cause a TBI. Due to the positive associations suggested in research between a lifetime diagnoses of TBI and both current and past ADHD, it is clear that further research is required to increase further understanding of the connection and how it affects the development and treatment of ADHD and TBI. Children who have had a serious head injury are more likely to develop ADHD — but new research suggests that symptoms may not develop for up to a decade later.

Narad’s research looked at 187 children with no prior history of ADHD who were hospitalised due to either TBI or other accidents. Of the 187 children, 48 eventually met the definition for secondary ADHD, roughly 25 per cent of the group.

The risk for developing the disorder was, in cases of severe TBI, four times higher than the rest of the children. even children with less severe head injuries were also at risk of developing symptoms many years later.

Individuals with premorbid ADHD performed significantly worse than their matched counterparts on several tests of attention, processing speed, and working memory, and were significantly more likely to produce profiles later rated as impaired by independent, board-certified clinical neuropsychologists. In addition, time from traumatic injury to testing was found to be negatively correlated with neurocognitive performance.

Secondary ADHD relates to symptoms 59

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Many families are frustrated with the lack of understanding about TBI and ADHD diagnoses.

of hyperactivity, impulsivity and attention-deficit disorder.

The following are secondary symptoms of ADHD: irritability, forgetfulness, disorganisation, low frustration tolerance, emotional lability, temper tantrums and aggressive, defiant behaviour, problems with visual and/or auditory perception, learning difficulties, impaired social relationships with parents, teachers, friends. Anything familiar? So, if there are so many similar symptoms presenting for those with ADHD and Acquired Brain Injury individually, surely one could simply apply the same processes when working with clients with the dual diagnosis? Quite simply, no.

These same applications will simply not suffice. Clients will often be written off as non-complaint, unmotivated or disengaged.

When they are often quite the opposite, but unable to communicate such.

Secondary ADHD presentation will mimic more classic presentation, but with increased lack of motivation, increased executive dysfunction and decreased attentional skills. Do not write these individuals off in their desire to maintain change.

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No matter the timeline of diagnoses, the approach will require adaption, and increased education regarding the complexities of acquired brain injury and its variability alongside an understanding of ADHD. The impact of the frontal lobe paradox on a neurodiverse brain is enormous, and a topic for a whole other piece.

The impact of this and awareness in an ABI/ADHD brain brings some tricky behaviours, not seen in a ‘typical’ ADHD presentation.

As we see the incidences of ADHD diagnoses increasing, there is a parallel trend within brain injury prevalence across the globe.

As we delve into the reasons for the correlations, there are a number of questions raised as to the impact of each on one another.

There is a significant impact of any injury on the ADHD brain, and subsequent challenges for managing the effects of ADHD on daily function.

A note here as well regarding the prevalence of ADHD in the criminal system, alongside the high rate of ABI in the same population.

I certainly see an increase in law breaking behaviours in our neurodiverse clients.

Again, another topic for another day. As is the further complexities of the female ADHD brain, exacerbated by a TBI and the hormonal fluctuations, makes for another real interest area of mine.

Even more niche understanding is required by MDTs further with this population, which is certainly growing.

There is a niche approach to supporting and empowering the injured ADHD brain.

A toolbox of executive functioning tools is only the beginning, the methodology and adaptability of using those tools is even more paramount.

It is key for anyone involved in supporting both adults and children with ADHD to understand the impact of acquired brain injury on the ADHD brain and behaviours, and vice versa.

At BIS Services, our expert and specialist approaches allow us to pre-empt, expect and relish the additional challenges of the even more diverse ABI ADHD brain and we have a plethora of techniques to aid in rehab and recovery, for both clients and their families. thebiss.co.uk.

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Maximising potential and achieving goals How Woodlands Neurological Rehabilitation Centre is using the expertise of its MDT to enable patients to exceed all expectations through neurological rehabilitation, rebuilding their lives during their time at the York unit and moving back towards independence. NR Times learns more For young mother-of-two Kelly who had already been through a rehabilitation programme after a devastating stroke, being referred to Woodlands became a life-changing move for her.

While Kelly still had profound needs after her initial rehab had finished, the referring team realised there may still be some potential for her - and identified the specialist Level 2 neurological rehabilitation site in 62

York as the ideal setting for that to happen.

“Kelly was using a hoist when she initially came to the unit. She had a very dense right sided weakness, requiring assistance from two people for all of her activities of daily.

Her speech, language and communication were impaired, as was her swallow,” recalls Sari Teasdale, head of therapies at Woodlands (pictured above).

“This was a young woman with two young children, so being able to get home was a really big focus of her rehabilitation. To ensure the best outcomes for Kelly, all therapy disciplines and nursing and care teams worked with her, taking every opportunity we could to help her recovery.

“And 24 weeks later, she was discharged back home to live with her husband and children.

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"Kelly no longer uses a hoist, she is able to get around the whole of her property with the use of a stick and transfer into a car to allow her access to the community. She is able to manage a normal diet and fluids and her speech and language improved, meaning she is able to interact with her family.

“This is so far from where she was when she came to us, and had Kelly not had the opportunity to continue with intensive rehabilitation, her options for returning home would have meant very limited access around her property, with the need for large pieces of equipment and an extensive care package, which is absolutely not appropriate for a young mother-of-two, and not what she wanted.”

These kinds of outcomes are routine for the specialist centre, which has helped so many individuals and families rebuild their lives, despite the many obstacles that may present.

“We will work with the patient and their family from the outset to identify what matters to them, set achievable goals and devise patient-centred therapy to support them to get there, which enables our patients to achieve outcomes like this,” says Sari.

“There are so many examples over the years, where the outcome we have supported people to achieve is so different to what it could have been, had they not come to Woodlands, and we’ll always work with the patient and family to help someone regain the life they want and achieve their goals.”

Rehab-focused goal setting In its tranquil surroundings in York surrounded by 3.5 acres of grounds and woodlands, 27-bed Woodlands Neurological Rehabilitation Centre - part of Active Care Group - supports patients with brain injury, spinal injury, stroke and other neurological conditions in rebuilding their lives from the moment they are admitted.

“It’s of benefit to the patient to access rehabilitation as soon as possible, in a specialist rehabilitation environment and start the process as soon as possible, as long as the patient is medically stable,” says Sari.

“Not everyone comes to us at such an early stage, some patients may have gone home before coming to us, but as soon as they arrive, the work starts.”

Arriving for an initial 12 weeks, each patient is assessed and the rehab process is commenced, looking at what will happen over the coming period. This involves both the patient, and crucially their family too.

“The whole situation is new to the individuals we support, and patients and families often report feeling quite worried, frustrated and anxious, so it’s really important we involve the family as much as possible and support them through the whole process,” says Sari.

“When we hold the welcome meeting within the first few days of admission to the unit, we establish the patient’s expectations for the period of rehabilitation and establish at their main objectives.

We don't want it to feel impossible.

We'll be realistic, open and honest “As part of the welcome meeting, we also use a values checklist, which helps us to better understand what motivates the individual we are treating. Is that person driven by independence, work, family, religion?

"Establishing a patient’s values helps the team to understand the person as much as possible, which is really important in rehab.”

Following a period of initial assessment, carried out by an experienced multi-professional team, a patient goals setting meeting is held.

“We ensure goals set are achievable during the period of time we have.

Sometimes this involves managing expectations to ensure that everyone

understands what the patient is working towards at any one time,” says Sari.

“It’s important for the therapy and nursing teams to understand what a goal is. For example, what ‘walking’ would mean for that patient in practice. Is it walking from the chair to the bathroom?

Is it walking a short distance to the shop to buy a paper?

"For some people it may mean walking ten miles with a dog, but everyone is so different that we need to understand the patient, their background and who they are as a person to support treatment.”

For goals which may look particularly challenging, the team will devise a plan to break the goal down to make it achievable, with timeframes depending on the patient’s impairments with regular reviews to allow monitoring of progress.

“We’ll do the groundwork, map out where we are going, and manage expectations along the way.

"We will look at making the goals SMART so we can help to deliver them.

We don’t want it to feel impossible, but we’ll also be realistic, honest and open,” says Sari.

The therapy and nursing team - supported by on-site clinicians - can then devise therapeutic plans of how to support patients towards their goals, which can change over the weeks ahead, depending on the response to treatment and level of progress being made. Therapy may be delivered in individual sessions, joint sessions with multiple disciplines involved and group therapy sessions, all with the patients goals at the forefront.

“Our focus is totally patient-centred and very holistic, we’ll be guided entirely by the patient.

"We ensure we educate our patients as families during the process,” says Sari.

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“We’ve had some brilliant outcomes in terms of what patients have achieved, compared to where they were when they first came to us - but that is about team work and everyone, including the patient having the same focus.”

Collaboration and innovation The multi-disciplinary team at Woodlands Neurological Rehabilitation Centre brings in physiotherapy, occupational therapy, speech and language therapy, psychology, music therapy and social work and working alongside the nursing team and rehab assistants - with a consultant in rehabilitation medicine and doctors on-hand when required – deliver specialist comprehensive therapy, care and support to patients.

“We do work closely as a whole team and involve the rehabilitation assistants in therapy sessions, as they are the team members who deliver the ongoing rehab across the 24-hour period,” says Sari.

“As part of their assessments, the occupational therapists may, for example, complete a washing and dressing assessment, and are able 64

to advise the rehabilitation assistants on how to support that patient physically and cognitively on a daily basis. We all work together in achieving this.

“And then of course we have the domestic staff, who we couldn’t function without, and the kitchen staff too. All of our food is prepared on-site, and I think that’s a really big thing when you come from a hospital environment to then be able to enjoy home-cooked food.

“We all come to know the patients and all have a role to play, and we work really closely in achieving that.”

Woodlands also invests in technology to support its therapeutic work.

In addition to the Guldmann Gait Trainer, to support patients as they recover movement, it encourages the use of remote tech which can be used in rehab sessions as well as encouraging self directed therapy where appropriate, to support a patient’s independence and maximise their progress.

“We use specialist apps for speech and language therapy, which can be accessed via a tablet by

patients in therapy sessions, as well as away from sessions to further support the therapy the speech and language therapy team do,” says Sari.

“We also use GripAble, which works on the upper limb focusing on grip, hand and wrist movement and allows the patient and therapists to see outcomes on the activities.

Again, this can be used in sessions and also by patients independently.

“Like with the gait trainer, not everything will be appropriate for every patient, but we have a range of options available.”

Woodlands is also investing in RehaCom, a software system for computer-assisted cognitive rehabilitation which supports patients to recover abilities in attention, concentration, memory, perception and daily living activities.

“We are about to roll this out, our occupational therapists have attended training on this software and are ready to go with it.

This brings even more to what we do and shows we’re continually developing ways in which we can support patients,” says Sari.

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The route to independence For most people when they arrive at Woodlands, their ultimate goal is to live as independently as possible, whether that is in their own home or a supported living environment.

And for Sari and the team, that is a goal they are pleased to support.

“Navigating what discharge looks like is part of the rehabilitation process, so we address that right at the start in the welcome meeting,” says Sari.

“For some our patients, they’ve been in hospital for weeks or even months before they come to us, so the idea of discharge from a 24 hour care facility must be really scary. It’s important we address that and reassure our patients and families and support them throughout the process.”

The Woodlands team work closely with local care teams - in localities where the patients live - to ensure their discharge and move back into the community is supported and sustainable.

“We will work with external services early on, once we know when someone is on the pathway to be leaving us.

"Not all patients will have ongoing care and support needs, however if they do, we’ll refer them to establish who would be funding their future care, to ensure packages of care can be set up,” says Sari.

“From a therapy point of view, we may refer to community teams to pick up where we finished with some continued input.

"We recognise that getting people back to their homes is extremely important. People do flourish in their own environments.

“We do a lot of work ourselves with patients in their own homes where possible and appropriate.

"For example, if a patient has cognitive deficits, we can work to orientate them to our kitchen in Woodlands or to the local shops, but that’s not reality for them.

"For some patients, we need to support that work within their own home and own local area for it to be meaningful when they are discharged.

“For other patients, we may refer this work to community neuro teams once they leave Woodlands.

The therapy and nursing teams often support the patient on the

day of discharge from the unit to hand over to care teams or families - it’s a big thing for us when one of our patients returns home, and we want it to be seamless.

“Our patients are supported by the extensive team at Woodlands, from the moment they arrive to when they leave and work in collaboration with all relevant parties externally to make sure they can return to their lives as independently as possible.

"That’s what we work towards and what we work with our patients and their families to achieve.”

Woodlands Neurological Rehabilitation Centre offers several different patient pathways within the service , including rehabilitation, long term complex nursing care and therapy maintenance management, Respite and Discharge to Assess. We are happy to discuss any patients that may benefit from our expert care and encourage our external colleagues to visit us, and get in touch with us on referrals@activecaregroup.co.uk 65

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Carbonhand: Getting a better grip and revolutionising hand function NR Times reports on the ground-breaking assistive device which is set to transform the lives of individuals with weak grip and poor hand function in the UK. Combining advanced technology and innovative design, this grip-strengthening, robotic glove offers newfound independence and enhanced quality of life to those who struggle with hand strength and dexterity.

In this article, we will explore the product, who might benefit from Carbonhand, and describe the main features of this revolutionary medical device.

Carbonhand has been described as a soft robotic glove that, when worn, can enable a user to form 66

and sustain a functional grip.

It basically amplifies the user’s natural grip when this has been weakened by a health care condition.

What is unique about Carbonhand is that through intelligent placement of sensors and adaptive control software it allows the user to have a very natural and responsive grip. Other products that support gripping tend to operate as a “switch” – they are either fully on fully off. A Carbonhand user can fine tune the response of the glove

to provide just the level of support needed for a particular job. For example, want a firm grip on a garden implement? Not a problem. Now you want to pick up a paper clip?

Not a problem.

The system is designed to support various hand sizes and is equipped with pressure sensors, “artificial tendons” that run through an “umbilical cord” to a “control unit”. The glove connects to a control pack via this umbilical cord that conveys both the control signals for operation and the tendons that activate

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the grip. The sensors in the glove detect when the user is trying to grip an object and the sensor’s signals are received by the control pack. These signals are used to activate the tendons so that a suitably strong grip is formed. There is a small control pad on the glove that can be used to operate the glove and an App (IOS or Android) can be used to fine-tune the operation. You can even us a remote button plugged into the control unit to activate the glove Who can benefit from Carbonhand?

It is estimated that millions of people in the UK suffer from conditions that can result in weak or absent grip and poor hand function. These include Stroke, Carpal Tunnel Syndrome, Spinal Cord Injury, Brachial Plexus Injury, Traumatic Brain Injury, Peripheral Nerve Injury, Multiple Sclerosis, Traumatic Hand Injury, Rheumatoid and OsteoArthritis, Cerebral Palsy and more.

Carbonhand has the potential to positively impact the lives of these individuals by providing them with the support they need to regain a greater level of independence and improve their quality of life. Being able to form a grip and hold onto objects is fundamental to many self-care activities.

As the population ages, and the prevalence of conditions affecting hand function increases, the demand for assistive devices like Carbonhand is expected to grow significantly. Of course not everyone with a hand function problem will be able to use the Carbonhand. As with all medical devices there are indications and contraindications for use. However, there are few absolute contraindications to use – perhaps the primary one being oedema following surgery when the clinician advises against mobilisation.

From the beginning The journey of Carbonhand began in the early 2000s with Hans von Holst, a neurologist at Karolinska Hospital, who often encountered patients with severely reduced strength and mobility in their hands. Teaming up with Jan Wikander, Professor of Mechatronics, they began developing a glove that could help strengthen hand grip. This collaboration led to the creation of the first Servoglove, the predecessor of Carbonhand. Anatomical Concepts were involved in the early UK introduction of

the “SEM Glove” back in 2014. They loved the concept and the mission of the Bioservo team. Many individuals reached out to try it but this first generation product proved to have a narrow range of application. For example, the SEM Glove relied on sensors in the fingertips and thumb that were not always ideally placed for individual users to operate the glove. The glove itself was stiff with the artificial tendons very prominent in the palm.

Over the years, the design has evolved to better cater to the needs of individuals with weak grip. The SEM glove and the first Carbonhand were effective for users with some ability to both flex and extend their fingers, but not for those with more severe disabilities. To address these limitations, the latest generation of Carbonhand was developed with a different array of sensors, an easy-to-don and doff glove, and an improved control app that allows users to personalise the performance of the glove and benefit from its therapeutic potential.

The manufacturer, Bioservo from Sweden, are also involved in the creation for products to enhance the grip of individuals involved in manual labour and tasks in the workplace that have the potential to lead to strain and injury.

This experience and know how has been brought to bear in the newest Carbonhand design.

Close to 200 patients have been involved in studies using the Carbonhand either as an assistive product or as a tool for rehabilitation. Across many health conditions, the Carbonhand and has consistently delivered improvements in most outcome measures including grip strength, overall hand function and quality of life. The spectrum of health conditions studied have included stroke, MS, peripheral nerve injuries, brachial plexus injuries, trauma, spinal cord injury and weakness related to age.

Carbonhand is a game-changing assistive device that offers life-enhancing support to people with weak grip and poor hand function in the UK. With its innovative design and advanced technology, Carbonhand is revolutionising the lives of countless individuals around the world and empowering them to regain their independence and enjoy a higher quality of life. Anatomical Concepts will be taking the Carbonhand ‘on the road’ in June, offering both clinical training and personal demos.You can contact them through anatomicalconcepts.com to find out more or to enquire about a visit.

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The importance of community engagement It’s vital for people to continue to feel engaged with their local community when they live in a care service for a number of reasons.

It’s vital for people to continue to feel engaged with their local community when they live in a care service for a number of reasons.

It supports people to feel part of the wider community, promotes choice and independence, encourages people to take part in their hobbies and interests, and introduces people to new experiences and social interactions.

At Exemplar Health Care, we’re committed to ensuring that everyone who lives in one of our homes feels empowered and supported to take part in their local community if they wish.

Here, we introduce our approach to community engagement and share some of the meaningful activities our service users have taken part in, in their local communities, over the past few months.

Community engagement toolkit To support this, we introduced a ‘Community engagement toolkit’ which gives practical ideas and examples of community engagement across Exemplar Health Care under three themes.

1. Service user outcomes: making every day better for the people we support Through effective community engagement, we will: • support people to integrate into their community and contribute to society • utilise community engagement to achieve better outcomes for people.

2. Recruitment Through effective community engagement, we will: • raise the profile of our homes and Exemplar Health Care in the wider community • recruit new people into our workforce.

3. Families and friends Through effective community engagement, we will: • maintain and enhance connections and engagement with families and friends • ensure that family and friends feel a valued and integral part of our homes.

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Bringing back memories Ron, who lives at Bennett Court in Pontefract, recently visited Bradford City Football Club – a club close to his heart from his childhood.

Ron has incredible memories of some of the players at Bradford City Football Club who played with his own father and uncle back in the 1920s.

The day out was organised by Life Skills Coordinator, Alison, after overhearing Ron talk about his love of the club.

Ron was given a grand tour around the grounds before visiting the changing rooms and sitting in the VIP seats.

The day was topped off with a brand new cap for Ron to take home as a memory of his day out.

Alison said, “It was such a special day visiting the football grounds – as this was such a key part of Ron’s upbringing and he has so much knowledge about former players from the club.

“At Exemplar Health Care, we support residents to pursue activities they’re passionate about, and this was a great way for Ron to enjoy an activity whilst also reminiscing on memories from his childhood.”

Ron added, “It was a great day out. It was so good to see the pitch looking so good!”

Taking a tour behind the scenes of Emmerdale Emmerdale fan, Linda, and the Activities Team at Wykewood in Bradford ventured into the Yorkshire Dales for a behind-the-scenes tour of the Emmerdale village (pictured on page 70).

Linda is a big fan of the show, never missing an episode!

She had a brilliant day walking in the footsteps of her favourite characters and enjoying a lager in front of the log fire.

The team even got to pull their own pints behind the bar of The Woolpack.

Emma, Activities Coordinator, shared: “It’s safe to say, we all had a fabulous afternoon!”

Connecting through writing Janet (pictured below), who lives at Longley Park View in Sheffield, loves receiving postcards through the Postcards of Kindness initiative.

The initiative encourages people to write and send postcards to residents of care homes across the UK, with the aim of combatting loneliness.

The team at Longley Park View have been involved in the initiative since it started in 2018, and Janet loves writing back to the connections she’s made.

Earlier in April, she had a busy afternoon writing Easter cards for her friends, before venturing out to buy stamps and post the letters.

After all of her hard work, they stopped in local pub, The Devonshire Arms, for a quick drink on the way home.

About Exemplar Health Care Exemplar Health Care is a leading provider of specialist nursing care for adults living with complex and high acuity needs. We have over 40 complex care services across England and growing.

Visit our website to read more - www.exemplarhc.com

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SPONSORED

When music therapy is not always the right treatment Sarah Morgan, a music therapist at Chroma, talks about the importance of client autonomy

M

usic therapy and neurologic music therapy are evidenced to provide clear benefits to speech and movement following a brain injury, but occasionally it is not the right therapeutic route for the client.

I recently met a client who had referred themselves for music therapy. Suffering a traumatic brain injury over 20 years ago, the client underwent rehab including physiotherapy and speech and language therapy and was later deemed to have the capacity to live independently.

During the assessment process, it was clear the client had cognitive deficits such as poor short-term memory, difficulty understanding some of what was being discussed, planning and organising and slurred speech.

After some research and having exhausted other therapies, the client hoped music therapy would further improve movement and speech.

During the first session, we discussed

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the damaged part of the brain that processes speech and moves towards the unaffected part of the brain that processes singing.

While the engagement was high, the client clearly felt self-conscious, and the initial results were not what the client expected. This is understandable as although these exercises are effective immediately after a brain injury, the client, who was an older adult, felt the tasks were a bit childish.

After discussing the sessions and arming the client with all the facts, the client chose to end therapy. Importantly, the client had the mental capacity to make that decision. The client chose to begin music therapy and stop it, demonstrating just how important it is expectations, and shared insight into for people to be empowered to make how music therapy works, timeframes their own decisions. and realistic goals.

Music therapy works. We know it does, A three-way combination of Patterned Sensory Enhancement (PSE) exercises, but it is not for everybody, and part of where music supports the client’s range our role is not only to deliver it to the highest standards of therapeutic input, of movements, basic speech therapy but to know when it’s not right for that exercises with different sounds and phonemes and Melodic Intonation Ther- client. Unfortunately, in this case, it apy (MIT) to encourage singing a phrase was not right, but the client chose to as opposed to saying it was used during try it, realised it was not for them and stopped the sessions. All I could do at the sessions. Such exercises bypass that point was offer alternative recommendations and wish the client well.

A client-centred approach is about establishing trust and a partnership between practitioners and clients, focusing care on the needs of the individual and ensuring that people's preferences, needs and values guide clinical decisions and sometimes that means being honest about the right support clients’ needs, even if means finishing a piece of work earlier than planned.

Music therapy works.

We know it does, but it is not for everybody

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Benefits of music therapy for older people

T

he pandemic, and the realisation of its significant impact on people’s mental wellbeing, has seen creative arts therapies come to the forefront as a cost-effective and effective way to support mental health.

The extent to which the pandemic negatively impacted the mental wellbeing of older people – especially those who live alone and those who live in residential care homes, is now widely documented and recognised.

Lockdowns saw incidences of social isolation and loneliness increase dramatically, which researchers have suggested can lead to, or worsen, anxiety and depression as well as increase the risk of developing conditions such as Dementia. This has not dissipated in the intervening years and so support for the mental health and wellbeing of the elderly is vital to maintain their quality of life.

Creative Arts Therapies, especially music therapy, has been proven to be an effective tool and is being increasingly used to help older people with communication, social engagement and memory; memories associated with music are not lost in the progress of dementia; therefore, nostalgia is a powerful therapeutic tool. Bringing a group of older people together to listen to music from their youth is a simple, yet highly effective way to connect with others – to share and reminisce. Playing music together as a group has also been found to support quality of life, promote mental wellbeing, increase social interaction and reduce depressive symptoms.

Music is a universal language that automatically connects with the brain and in doing so, releases hormones such as dopamine, endorphins and oxytocin, which help to elevate and improve mood. This is what makes music so powerful and allows people to feel and release emotions, promoting a positive mental state.

For older people, group music therapy sessions provide a great way to support social interaction

boost self-confidence and morale and de- instruments to help unburden feelings velop trust and positive relationships with and emotions – again, promoting good mental health. others. Most importantly, by allowing the group to choose the music they listen to, it Group music therapy sessions can be gives them ownership of the group as well easily integrated into residential care homes and those living in assisted livas allows them to choose the music that ing accommodation by providing them they themselves, relate to. Studies show as regular weekly activities among reswe tend to go back to the music of our youth, so this generation will share numer- idents. Those living in their own home should be able to join group sessions ous songs they can all connect with and this connection helps make music therapy that are provided within their area. effective.

Mood elevates with each positive memory and the coherence of a group improves socialisation – gives them something to Bringing a group of older look forward to and develops new friendpeople together to listen to ships and bonds, tackling loneliness and music from their youth is a isolation directly.

But music therapy is more than just listensimple, yet highly effective ing to music. Music therapists guide people way to connect with others through the process of listening to music, playing music and improvising with Group music therapy can be adapted to meet the needs of each individual in the group and prides itself on its inclusivity. Chroma recently began delivering music therapy sessions within a residential care home. Through this, residents have been able to develop connections with one another allowing them to interact with each other in a meaningful way. Sessions are a mixture of singing and instrumental activities, with each session bringing a smile to residents’ faces. They talk, sing and play as one, which gives them a connected sense of happiness. Playing together is providing them with a greater sense of solidarity and community within the home. wearechroma.com

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The importance of trauma-informed practice In ensuring clients are supported after life-changing injury, and in protecting treating professionals, trauma is a key topic for consideration across the whole spectrum of neuro-rehab. Here, we learn more about how Think Therapy 1st’s focus on trauma is enabling clients to achieve life-changing outcomes, while also ensuring its team have support on both a professional and personal level

W

hen working with people after serious or life-changing injury and in devising a plan for their rehabilitation, very often, given the circumstances of what happened to them, trauma will also be a key factor for professionals to address.

Trauma can impact every aspect of a person’s recovery, and if not addressed with bespoke support, can be central in hindering the progress they may otherwise make in rebuilding their lives.

But trauma is a deep and multi-faceted topic. While the circumstances of their injury may have been traumatic in themselves, this can revive memories of experiences in people’s pasts which can exacerbate their current state of psychological distress.

And while trauma is most associated with seriously injured clients, the same prinlife-changing outcomes it secures - and ciples also apply to those tasked with identifying and appropriately supporting delivering their care and rehabilitation. with trauma is a key aspect in achieving For professionals continually exposed that. to traumatic details and injuries, and “I tend to think of trauma by using the delivering the support needed for cli‘invisible backpack’ analogy – everyone ents to rebuild their lives, this can be a carries their emotions, their fears, past heavy burden to carry. Furthermore, for experiences and current concerns. any who have had traumatic experiWe don’t know what hides in another ences in their own lives, their roles can person’s backpack, or how heavy it is, present triggers which amplify existing or the impact of what is in there on the psychological distress. person’s life,” says Aimee Crane, OperaFor both clients and professionals, tions Director at TT1st.

Trauma Informed Practice (TIP) is criti“We have to be very mindful of trauma cal to ensure that all steps are taking to in the service that we are delivering to ensure their wellbeing, and for rehabilclients. It is very likely they will have itation to progress in the most positive been through very traumatic events way possible. with their injury - but what has hapAt Think Therapy 1st (TT1st) this is a pened in their lives previously may be topic which carries great importance. something we don’t know initially, and Committed to person-centred care, it may take some time to find out. while also protecting their team, trauma “Equally with our team, we’re very is a key focus for every aspect of what aware of the psychological impact our is delivered. With its specialist rehabilijobs can have, and are committed to tation occupational therapy (SROT) apthe wellbeing of our clinical and proach ensuring every activity is geared operational team. around rehab and positive recovery, “We have also had circumstances TT1st has built a reputation for the where the work of our OTs with clients

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has re-traumatised them from something that has happened in their own lives. That is something else we need to be very aware of, and we have procedures in place to support with that.”

TT1st is introducing a new programme of in-depth training for its clinical and support team, to make them aware of trauma, the signs to look for, and how to make the necessary interventions to assist with that.

“This is so important for us, it’s central to us being able to deliver the genuinely life-changing outcomes that we do, so we are doing all we can to protect the team, while also enabling them to do the very best for their client,” says Aimee.

Trauma-informed practice for clients After sustaining life-changing injury, the circumstances of what happened, and the sense of loss so often felt around the life they used to have can have profound psychological consequences.

While in some circumstances a client will present with acute trauma and symptoms of PTSD, that is not always

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the case. And while they may appear to be coping, trauma can manifest in a number of ways.

“We have to be very mindful of how we approach every client so as not to re-traumatise them, so we are very careful in how we work with people, especially at first,” says Aimee.

“Dealing with a client and knowing the circumstances of what has happened to them, but not knowing at this point what is in their backpack, can be difficult and it can be complex to unpick.

“Trauma can make people feel powerless, and the therapist-client relationship is a risk here because there is a power imbalance. A therapist in doing their job does have ‘power’ over the client, but for us, we always make sure this becomes a collaboration and a partnership, rather than a therapist appearing to be in control.

“This is an important thing to address to ensure we are building a positive relationship with the client and are supporting them in every way possible.”

For Aimee in her role as an OT, she comes across trauma in clients often but the complexities around that can be ongoing, presenting new challenges as rehabilitation progresses.

“I have a client who was subject to a targeted attack, she sustained a brain injury and many physical injuries and was clearly an exceptionally traumatic experience for her,” says Aimee.

“She went through a 12-month rehabilitation plan with us with wonderful outcomes, the progress she made was fantastic, but then within six months of being discharged, she made contact with us, reporting that she was no longer maintaining her therapy goals.

We found that really puzzling because we have excellent outcomes, people are discharged, and our work enables them to thrive on their own, going on to maintain their gains, and, more often than not, raising to new challenges and achieving new goals, post-discharge.”

“When I reconnected with the client, I found out that the perpetrator of the attack had been released from prison and was back in the local community.

Our client went from having rebuilt her life to living behind closed curtains in her house, and experiencing post traumatic effects, including re-experiencing (of the traumatic event), avoidance (of stimuli associated with the trauma) and hypervigilance, all of which impacted on

her overall ability to function day-to-day.

“While we had addressed the traumatic aspects of her attack and some aspects from her past too, and we had made such brilliant progress, this had re-traumatised her all over again.

“Our work with her continues and is ongoing, but we will do everything we can to help her rebuild from the traumatic experience she has been through, as we did previously. My role is to help the client to lessen the effects of the traumatic event – we are doing this by introducing distraction techniques, self-soothing activities and mindfulness. It’s important to understand what meaning the client has attached to the event, and if appropriate, guiding them towards a more helpful and less damaging meaning.

Deep-rooted past trauma is a further factor to rehab, with TT1st supporting clients as best they can in rebuilding from this.

“While we often say ‘it’s good to talk’, actually for people who have been through historical trauma, it’s not necessarily something they want to open the lid on” says Aimee.

“Clients might mention something to us, which we can then be mindful of and understand the trauma they have experienced, but we'll absolutely respect a person’s decision not to want to bring it up. There is little evidence for the idea that if we talk about something then that in itself makes it less distressing.”

“There are so many aspects to trauma that people process things in very different ways. Through our approach to TIP, we can support them without being intrusive, but while putting together a plan to help them rebuild their lives.”

Trauma support for staff While trauma is most associated with survivors of serious injury, the impact on the professionals supporting them through that can be significant.

“We hear TIP mentioned a lot, but that isn’t just about how we as therapists work with our clients. It’s also how we interact with other staff, and how we support our team,” says Aimee.

In addition to the often highly distressing situations rehab professionals support with, events in their own lives can have further impact.

For one TT1st OT, memories of a childhood trauma were revived by work

they were completing with a client, which had a profound impact on them.

“We are exposed to all sorts of situations as therapists, but even with your own colleagues, you don’t know what they’re carrying in their backpacks from their own background and childhood.

“It was distressing for our OT, and while we’ve always been committed to our staff wellbeing and TIP is nothing new for us, it did make us think about what more we can and should be doing.

“We are constantly exposed to working with people who have been through all kinds of situations, and none of us will have gone through life with no low points or bad experiences, so you just never know how someone may be affected until you are in that position of having to support them through it.”

To help make all possible provision to support their team - both in their professional and personal ability to deal with trauma - TT1st is rolling out new training across its operation. Initially delivered to all in-house clinicians and operational staff, it will then bring in its OT network across the country.

“We will be covering the common effects of trauma and exploring ways to apply TIP in our clinical work, including considerations to ensure clients feel safe, empowered, have choice and control, whilst developing a trusting client-therapist relationship.

“We’ll also explore what makes a trauma-informed organisation, because we know that supporting our team in this way helps with our resilience and motivation to do the job, as well as our overall job satisfaction.

“Trust and safety are absolutely central to what we do at TT1st, not just with the clients, but internally with staff too.

We want to make sure that everything is threaded through – our policies, staff one-to-ones and appraisals, for example. So the support structure is in place and everyone knows about it.

“It’s very important in terms of empowerment. That is something we focus on absolutely with our clients - for example, in their assessment form, the first thing we look at is the client’s voice being heard - but for our team, we want them to feel equally empowered.

“By knowing the support that is in place, not just for them in their professional roles but also in their own lives, we hope we are doing all we can to empower them as people.” tt1st.co.uk 73

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Benefits of the SMART Assessment for PDOC patients and clinicians Having qualified SMART Assessors as part of our multidisciplinary team in our specialist neurological services brings measurable benefits to individuals with prolonged disorders of consciousness (PDOC) and their families.

In this EveryExpert article we speak to newly qualified and experienced assessors about their training, how the SMART assessment is being implemented at their services and the positive impact this is having on residents.

What is SMART? The Sensory Modality Assessment and Rehabilitation Technique (SMART) is an award-winning clinical investigative tool for the assessment and rehabilitation of people with PDOC following severe brain injury.

Pioneered at the RHN (Royal Hospital for NeuroDisability) in London, the SMART identifies any potential awareness in adults with severe brain damage who are in a low conscious state. It also identifies the functional and communication capabilities of patients in a minimally conscious state. The SMART has been clinically designed and is standardised. It is an extended assessment and investigation of behavioural responses, culminating in a measurable intervention and/or management strategy.

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Why is SMART the most well-regarded assessment for PDOC? Ady Capener is Therapy Manager and Senior Occupational Therapist (OT) at The Dean Neurological Centre in Gloucester, a specialist rehabilitation and disability management service for people living with a range of different and complex neurological conditions. As an experienced SMART Assessor, Ady also helps train clinicians in the SMART assessment and explains how its unique approach gives the individual the best chance to respond and the clinician the best opportunity to understand and support patients.

Ady says: “At The Dean we work with a very complex patient group, which requires specialist knowledge and skills. The SMART assessment provides a structure for that, it has been standardised and validated and gone through rigorous testing to make sure that when you are assessing you follow a standard and do it in a certain way. It’s more than just an assessment.

It’s more like an ethos and an overview on how

you should treat and assess individuals. It doesn't just give you the assessment, it gives you treatment options, which makes you think about things that you need to make sure are as optimal as possible before you do an assessment. So for example that could be reviewing someone's medication, positioning, medical stability, considering if they’ve got any infections, or had any seizures?”

Ady says: “When completing the SMART assessment we assess the individual during rest periods and then during periods of stimulation, so this ensures that we get to know the person really well. We consult the whole MDT and the individual’s family is also involved, because they may respond differently to family members. It is all recorded and included. We consider all the different senses that the person uses and see which one elicits the highest responses, which then guides your treatment plan.

“The SMART assessment gives the individual the best opportunity to show their level of awareness, and then as clinicians we know that we have given them the best chance if we have optimised everything. If you follow the process and do the assessment thoroughly, you can be confident that you won't have missed anything.”

Kirsty Allison, OT at Elysium’s specialist neurorehab centre The Bridge in Middlesbrough, has recently qualified as a SMART Assessor

SPONSORED and explains how the SMART assessments feed into a more detailed treatment plan for patients.

Kirsty says: “The SMART Assessment provides an indicative diagnosis of what level of consciousness and awareness the person actually has, which can then feed into a more comprehensive treatment plan. It’s very thorough. For example, the first section of the assessment looks at any pre-existing problems, like positional issues, sleep wake issues, and it gives you some baseline ideas of what you can do to support the individual in your care. It also identifies any strengths they've got, so you can optimise those and build that into therapy.

By addressing those issues and strengths first, it creates an important, standardised baseline which you can then work from.”

Who can deliver SMART? The SMART assessment must be applied by a SMART assessor who has completed specialist training and adheres to the SMART standards of practice and guidelines. However, a particular strength of the SMART is that the whole MDT and family members can input into the assessment so that a comprehensive understanding of an individual can be gained.

Elinor Jordan-Bennett is Senior OT at Adderley Green Care Centre in Stoke-on-Trent, a specialist neuro-rehab centre which has been designed specifically to support the needs of individuals who have complex care and rehabilitation needs. For Elinor, bringing together the various experience, expertise and interactions of the whole team is what makes the difference.

Elinor explains: “PDOC is a very complex area to work in and there can often be confusion between what is a reflexive response like a cough, and the varying interpretations of a smile which could be reflexive or intentional.

The SMART assessment brings clarity around responses and provides the care team, families and also commissioners a better understanding of what that person's abilities are.

“So far I’ve completed five assessments, currently commencing my sixth and it has involved a whole team of people across the MDT. This has included Therapy Assistants, Care Staff, Psychology, Activity staff, Speech and Language Therapists, Physiotherapists, Nurses, and even bringing in the non-clinical team members such as our domestic team.

For example, I’ve spoken with members of our cleaning team to see if they have observed any responses when they are interacting with the individual whilst cleaning the individual’s room. It’s a very thorough process and through it we get a very accurate picture of a person’s response levels.”

How does the SMART assessment benefit families?

When a relative is in PDOC it is a particularly confusing and distressing time for families.

Not only must they come to terms with what has happened to their loved one, but also they need to adjust to navigating an uncertain future, waiting for signs or responses from their relative in PDOC. Pauline Matthews, Lead OT at the Bridge in Middlesbrough, is currently working towards becoming a SMART assessor, and she explains how having an independently verified set of guidelines removes some of that uncertainty for families because the SMART assessment places all responses on a diagnostic spectrum and identifies the quality of those responses.

Pauline explains: “It’s incredibly useful to have an independent set of guidelines to work from.

When a relative is in PDOC it is a particularly confusing and distressing time for families It gives us definitive answers to exactly what that person is able to do and where to pitch our intervention. As clinicians we feed into the assessment, but the family members can also contribute and so it builds a detailed overview of response levels. It can then give indications about the prognosis of the individual and what inventions might be beneficial in the future.

“So, in terms of when we work with families, it’s not just us saying this is what we’re seeing, this is from an independently verified and produced assessment. It helps put their experience with their loved one into context and they have a better understanding of what is happening and what outcomes there may be. Anybody who has a SMART assessment should be reviewed yearly, so the families are updated about their relative’s status and any natural recovery that the person in PDOC is having.”

How the SMART creates a holistic assessment environment For Kirsty Allison, OT at the Bridge in Middlesbrough, she’s noticed how using the SMART assessments has not only improved the family experience but environments across the service have also been optimised.

Kirsty says: “Since completing the training we’ve become more mindful of how we involve families and their experience of supporting their loved one. It can be very confusing, so I’ve developed an information pack for families about what they can expect at different levels of consciousness.

“We try to provide information and educate families about what they might see and its meaning.

"For example, they can see their relative saying words and appearing to be following them round the bed, so they question how they can be in a prolonged disorder of consciousness?”

Kirsty goes on to explain how the assessment has inspired innovation across the service.

“In the same way, we’re more mindful now of how we can optimise sensory experience across

our service. The sensory assessment itself goes through different sensory modalities and looks at responses to each of those.

"We think about what principles have we learnt during the assessment and how can we ensure they are optimised in day-to-day experience for our residents.

"We’ve made a sensory room and a sensory terrace as well, where we’ve incorporated tactile areas, lighting, and a solar powered water feature.

It’s all wheelchair accessible and also accessible from postural chairs so if you have somebody who is in PDOC and requires postural support they can also use it.”

What are the benefits of SMART for MDTs? Susan Field, Director at The Dean explains how the comprehensive nature of the assessment enables her MDT to work together with clarity.

Susan says: “The assessment is very detailed, so not only does it confirm consciousness levels but it clarifies any future rehabilitation goals which guide and shape the way our team work together.

The clarity that we obtain from the SMART assessment is hugely beneficial for our MDT and influences the whole care pathway.

“From the different interventions and therapies that we can use, to how we help family members with psychological support, are all guided in some way by the results from the assessment.

Should individuals become unwell, get admitted to hospital or need end of life care then our decisions are influenced by the outcome of the assessment.”

How do commissioners respond to the SMART assessment work?

Elinor Jordan-Bennett, Senior OT at Adderley Green Care Centre in Stoke-on-Trent, explains the benefit for commissioners and patients.

Elinor says: “When individuals come to us from an acute hospital, they’ve typically had baseline assessments completed, for example, the Wessex Head Injury Matrix and Coma Recovery Scale. These are two of the three recommended assessments by the Royal College of Physicians 2020 PDOC guidelines.

"These provide a good initial understanding of what treatment pathway an individual needs but the SMART assessment goes into much more depth due to the structured guidelines.

“SMART provides essential information both for the care team and commissioners, because ultimately the treatment plan that comes out of the SMART assessment is very comprehensive and personalised.

"We also have regular review meetings for the individuals in our care and the SMART feeds into all of those.”

For more information on SMART assessments, the RHN (Royal Hospital for Neuro-Disability) has produced a comprehensive guide here.

Click here for the latest insights, blogs and news from Elysium Neurological.

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SPONSORED

Ending the ‘revolving door’ of failed discharges Through the creation of the Assertive Transitions Service initiative, inpatients are being supported to overcome the barriers that are preventing them from being discharged from hospital and reintegrating back into independent or supported living in the community.

Here, we learn more about the pioneering project, its positive impact on delivering sustainable discharges, and the potential for it to be rolled out in more locations across the country.

For a vast number of patients in a hospital setting, being able to live an independent life in the community is their ambition. But actually achieving that can be hugely challenging.

The process of discharging from a hospital setting into the community has long been fraught with potential pitfalls. Is the person ready psychologically as well as physically?

Are the right things in place for their reintegration? Will they be able to cope?

In many instances, the lack of success in their discharge lies in this uncertainty and lack of effective planning, with patients feeling unprepared for their new life beyond the safety of their inpatient surroundings, leading to them ending up staying or returning there.

But through the creation of the Assertive Transitions Service (ATS), the longstanding barriers preventing patients from being able to live successfully in the community are being tackled.

This service provides a tailored package of support which promotes the recovery of patients residing in hospital and allows them to move directly from a hospital to a community placement, whilst being able to live a meaningful life and avoiding readmission.

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The ATS initiative, created by the East Midlands Provider Collaborative (IMPACT) - which brings together the NHS with partners including St Andrew’s Healthcare, Rethink Mental Illness and Framework - is working successfully across the region, supporting a person in hospital for up to 12 months prior to their discharge, and often up to the same length of time once they have moved back into the community.

Certainly, its impact is being felt by people who have been trapped in the

‘revolving door’ of failed discharges.

For 49-year-old Helen, who has been involved with statutory services since the age of 14, she credits the service with making the meaningful difference in her being able to achieve the independence she has always hoped for. She has now been living in the community for almost two years.

“I didn’t have much faith in the authorities….I thought if that service can’t help me, then how can this one? I think the issues moving from hospital to the community is the lack

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of the ‘in between’,” says Helen.

“ATS offer the educational side, they’ll help you with life skills, bank accounts and activities. They helped me realise the community was a safe place.

“They’ve got me to a stage now where I know it’s OK to be in the community.

You do belong. My life is worth living in the community.”

Currently focusing on discharges from secure inpatient settings directly into the community, the success of the scheme is now seeing it considered for other patients - including those in a neurological care environment and those living in other parts of the country.

Through its partner working approach and bespoke support, ATS is helping to address key issues, which have previously been barriers to sustainable discharges.

‘We've got one key goal, which is making sure that we reduce the length of stay for patients, by proactively supporting them and meeting their individual needs,” says Dr Tawanda Pendeke, clinical team lead at St Andrew’s Healthcare, based in Northampton.

“ATS is s a psychosocial model which ensures through collaboratively working with inpatient and community services that patients are integrated seamlessly back into the community through provision of intensive transitional support.

“This has been designed purposely because we know the challenges of the ‘revolving door’ patients. And through ATS, we can support them with the stresses they may face.

“As a wraparound service, we are addressing key issues from a recovery perspective - we focus on the clinical recovery, which means we provide in reach support to the inpatient services in assessing readiness for discharge, alongside the social recovery, which means we then link in and signpost patients to the relevant stakeholders in the communities.

“What this translates to for patients is gaining the social capital they need, and ensuring that relationships with families or people identified in their

support network are positive. Where personal recovery is concerned, our team engage the individuals in strength based interventions to help rediscover self - for instance, an area of focus could be around character strengthening.

“All the programmes are individualised to meet the needs of the patient, and there is a concerted effort by all partners involved in making sure that a patient transitions smoothly.”

The multi-faceted approach sees lengthy planning and support both pre- and post-discharge, which is helping to ensure its success.

“We understood that building therapeutic relationships with a patient before discharge is very important,” says Dr Pendeke.

“There was a gap where discharge and re-integration in the community is concerned, which patients had identified through co-production groups, and we realised there was a lack of support to help them with the transition.

“As a service, we identified that building therapeutic relationships prior to discharge was integral to the transition process. This is because having a familiar face pre- and postdischarge would help mitigate some of the challenges which a patient encounters, knowing we are there for them depending on their lifeworld needs for up 12 months.”

And through the stories of patients such as Helen, who had long felt unsupported both before and after discharge, the involvement of ATS has proved transformational for her.

“With Helen, she had previously moved from one secure service to another, with not much changing for her. But when she came to ATS, I think it reduced ‘gate fever’ for her,” says Angela Ncube, Pathway Navigator

The process of discharging from a hospital setting into the community has long been fraught with potential pitfalls

at St Andrew's Healthcare.

“She is coming up to two years now since her discharge, and it hasn’t all been smooth sailing and there have been a few hiccups here and there, but she has been able to maintain her independence in the community in a way both herself and her family didn’t think was possible. Even I, as a clinician, looking at the paperwork and the history, was questioning whether it would work.

“But I think the success has come from having appropriate support mechanisms in place and how well we have come to know Helen.

Aligning the right clinician with a particular patient is also hugely important.

“Knowing her triggers and knowing how to support her through difficult periods, being able to read the unspoken cues and knowing she’s not OK without her telling us there is something wrong.”

Through the work of ATS, and its ability to address major issues in the challenges around sustainable discharges, the initiative is understandably attracting attention from beyond the East Midlands.

Dr Pendeke says the hospital is exploring ways to work with other providers around the country to help replicate the service and its success, to benefit healthcare.

“We are potentially looking at developing a service that mirrors ATS in terms of functionality, one that could look at patients from non-secure environments,” says Dr Pendeke.

“We want to cater for as wide a group of patients as possible, so no one is left behind in accessing the much needed transitional support.

“It’s about having conversations with providers from other areas and seeing whether they need this level of support for their patients as they transition from hospital and back into their local area.”

To find out more, visit stah.org/ats

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SPONSORED

Maximising potential while achieving ambitions How The Coaching and Therapy People are delivering personalised solutions for people with neurological conditions

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orn out of the demand for a Life Coaching and Rehabilitation company headed up by a disabled individual, The Coaching and Therapy People provides Personalised Life Coaching and Therapy solutions to individuals with neurological conditions across the UK. What sets us apart from other rehabilitation companies is the unique blend of first-hand experience from our director, Nath Fernandes, a NCFE qualified Life Coach with Cerebral Palsy alongside professional knowledge courtesy of our HCPC registered Occupational Therapists.

This enables us to provide a truly unrivalled approach to maximising one’s potential whilst assisting our clients to achieve ambitions.

Our values We are all about maximising our client’s potential. Our unrivalled position in the market puts us in the ideal stance to be able to assist in achieving ambitions of any size whether it be to travel the world or simply be able to become proficient at a hobby.

During our clients rehabilitation journey, we aim to boost self-esteem which can be at a very low level when first engaging with our services. We do this by working with clients to identify their ultimate goal and then create a ‘roadmap’ within which we break that goal down into a series of sub-targets.

Over a period of time, we sequentially work through these targets until the ultimate goal is reached.

Why engage with our Life Coaching and Occupational Therapy services?

Having a disability can be a challenge at times, especially when juggling the extra tasks such as attending appointments with various professionals whether that be GPs or physiotherapists. We can assist you to put everything into perspective and identify what really matters to you in life, for example, improving one’s health and wellbeing. Once

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identified, we will assist you to create a ‘roadmap’ to follow over the coming weeks or months. During this time, we may suggest partnering with other professionals such as a nutritionist to provide specialist input and work as a collective to assist you to achieve your overall goal or ambition.

An example of how we assist After Nath conducted an initial consultation with RJ, it was identified that one of his goals was to improve his health and wellbeing. Using Nath’s prior knowledge of Adaptive Yoga, he was able to contact a local Yoga teacher offering this service and arrange a taster session. As a result of RJ’s complex needs, Nath worked alongside his Multi-Disciplinary Team (comprising of a Physiotherapist) and himself to seek out products such as wedges enabling him to feel the full benefit of the session. After the session, he felt positive and relaxed and plans to do weekly sessions in the near future.

About our director, Nath Fernandes Nath was born in 1992 with Cerebral Palsy and has worked in the disability sector for more than 10 years alongside individuals in the capacity of a Life Coach and a Mentor to assist them in realising their ambitions. It has been his own life long ambition to found a rehabilitation company as it is uncommon for these to be headed up by a disabled individual rather relying solely on ones qualifications. By having Nath as our director, it enables The Coaching and Therapy People to resonate with clients by gaining a deep understanding of their goals not only on a professional level but also personally through lived experience.

Outside of work, one of Naths passions is traveling the world (40 countries and counting at the time of writing) mostly in an electric wheelchair to discover how different cultures react to disability in addition to the accessibility of said country. He documents

this in his travel blog, ‘The Wheelchair Traveller’.

When not at work or travelling the world, you will generally find Nath at the gym or catching the train to an urban orienteering event.

The importance of business acumen Aside from The Coaching and Therapy People and after obtaining a First Class degree in Business Enterprise, Nath used his entrepreneurial skills and acumen to found a successful childrens company in 2016 and now has bases in both Bristol and London providing LEGO birthday parties.

His business acumen also comes in handy when managing his team of 10 PAs on a daily basis. He recently wrote a short post on LinkedIn discussing how he feels that he has become a little of a HR Professional himself by accident highlighting the importance of maintaining a grasp of current legislation and keeping an eye on staffs monthly wage journey to ensure that they are paid correctly even when a third party is implemented.

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Having a disability can be a challenge at times, especially when juggling the extra tasks such as attending appointments with various professionals whether that be GPs or physiotherapists

Who do we work with?

Although we work with individuals and their families, we also offer our services to the following: • Case Managers • Deputies/Solicitors • Local Authorities • Schools and Colleges • Therapists of different disciplines We are always open to working outside the above remits, simply get in touch with us to discuss your requirements further.

I’m interested in engaging with your services, what are the next steps?

We would love to assist! The first step is to get in touch with us to discuss how (and if) we can assist.

You can email us – info@coachingandtherapypeople.uk or completing our contact form. If it feels that it is something we can assist with, we will arrange a FREE ‘Meet and Greet’ with you either via Zoom or in person (travel fees apply) to discuss your requirements further and see whether we are the best ‘fit’ for you.

For more information about our services, please visit our website.

What are your fees?

Dependent upon the service you require, we charge between £40/ hour - £80/hour.

Staying up to date with us You can stay up to date with the latest news from The Coaching and Therapy People and Nath Fernandes via our social media: LinkedIn, Twitter, Instagram, and Facebook.

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Head for Change supports families of ex-players with residential care costs Small charity steps in to help former footballers with dementia after assistance from the PFA charity - with assets of £58million - was refused

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hree families of former football players who are living with sports-related dementia are being supported with residential care costs

by Head for Change, after assistance from the multi-million pound resources of the PFA charity was denied.

Head for Change is donating £3,000 each to the families of former footballers Gordon McQueen, Tony Parkes and Allan Gilliver, to help meet the soaring cost of care for their loved ones.

Although each of the families has appealed for support to the PFA charity - recently renamed the Players’ Foundation - to access some of its declared assets of £58million to support with residential care costs, they have been refused.

Now, Head for Change - a small charity founded in 2020 by three family members of ex-players who live with probable chronic traumatic encephalopathy (CTE), which was classified by a coroner as an industrial disease - is stepping in to give the badly-needed practical support which has been absent from elsewhere.

Through funds raised from a footballing lunch in London, supported by former Arsenal and England legend Paul Merson and MBN Promotions, Head for Change is laying bare the need for ex-players suffering from an industrial disease and their families to receive support.

Dr Judith Gates, co-founder and trustee of Head for Change - whose husband, former Middlesbrough player Bill Gates, now requires residential care - said: “This dementia journey is often a long one - and it is hell.

“We are dealing with families stressed beyond limits throughout this journey, families who do not know where to

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go for financial support.

“Through these donations, we are stepping in to bridge this gap and do what the wealthy Players’ Foundation refuses to do.

“We only wish we could help more families. We ourselves are living with this tragedy, and understand first-hand what families are going through.”

Head for Change works extensively with former footballers and their families, offering care and support in group settings and to individuals, as well as providing families with access to Admiral Nurses and other experts.

Dr Gates said that as well as the significant emotional and physical toll on families of caring for loved ones with dementia, the financial burden is a growing concern for many. this ongoing terror every day.”

While two years ago the PFA Union was Now rebranded as The Players’ Foundareported to have asked the sporting tion, the PFA Charity severed links governing bodies to set up an indewith the PFA Union following a Charity pendent care fund to support former Commission regulatory inquiry, which is players with dementia, this has not yet the most serious form of intervention. materialised - but families have said it Dr Gates notes that, despite assurancis absolutely crucial that any such fund es by the PFA Union that dementia in meets costs of residential care. ex-players is a priority, affected families “These families are exhausted from now receive less financial support from bathing, cleaning and caring for a per- the PFA Union and/or Charity than they son who is invariably resistant, often did when Gordon Taylor was CEO. violent and increasingly dependent,” “We ask the Players’ Foundation, ‘What said Dr Gates. are you doing with your £58m of assets “But the much feared central concern that originally came to you from the is what happens when a loved one Premier League to support players?’,” needs full-time care. How will it be she said. funded? What will happen to our sav“A charity does not exist to use its assets ings? Will we lose our home? We see to create more assets to create more

We are stepping in to bridge this gap and do what the wealthy Players’ Foundation refuses to do

assets. It exists to use its assets to be of benefit to its beneficiaries. These guys are suffering because of their profession.

“Football makes billions. Football needs players. The Players’ Foundation has a responsibility to look after players who have served the beautiful game so well.”

‘Care costs are a noose around my neck’ N

atalie Parkes-Thompson is the daughter of Tony Parkes, a former Blackburn Rovers player and manager and club legend often referred to as ‘Mr Blackburn’. He was diagnosed with dementia in 2019. Here, she gives insight into the financial struggle she faces to ensure her beloved dad is cared for, and her distress that support has been so hard to find prior to Head for Change’s intervention My dad went into residential care because I couldn’t cope with looking after him on my own anymore. I lost my mum to cancer and I’m an only child. I have a full-time job and children aged five and two. Making the decision to put dad into residential care was heartbreaking, but we had to do what was best for him.

The costs of care are a constant worry.

They feel like a noose around my neck.

Next month, they are going to rise by another 12 per cent. Knowing that is on the horizon is on my mind all of the time. Every month, it costs thousands of pounds just to know my dad is being cared for, and realistically I don’t know how long that can be sustained. If we

can’t afford his care costs, we’ll have to look at caring for him at home - but I don’t know how that will work.

I feel like I’m on my own in this. It feels so unfair that there is no support - if my dad hadn’t played football, he most likely wouldn’t have dementia.

He has an industrial disease caused by his job, yet there is no help for us.

I’ve kept myself to myself for a while now because asking the PFA for help and getting absolutely nowhere was making me ill. I really hit a wall with the PFA when my dad went into residential care. The barriers really went up then. I’d ask for help but they made it perfectly clear that they will not finance residential care, so I’ve stopped asking. I’ve lost all hope.

This donation from Head for Change means so much. I feel blown away by it. It was given from the heart with no strings attached. It’s not about the amount that is most important - this will cover part of dad’s care costs for a month - but it’s the fact it was offered to us, I didn’t have to ask. It’s the fact that someone is there and willing to help us financially with the cost of

residential care. It feels like someone is listening at long last, that someone understands and wants to help.

The costs of care are a constant worry The difference with Head for Change is that they genuinely do know what my family are going through, because they live it too. They’re not just sitting behind a desk, everyone involved is experiencing what I am experiencing.

This is their life as it is mine. For the PFA, this doesn’t affect their daily lives. If someone needs counselling, it’s outsourced, because they don’t understand. I no longer expect any help to come from this avenue and I have accepted that.

We are also very grateful to the people who care about my dad - Blackburn Rovers, who have always been very good to us, and the fans.

Their support is appreciated more than they will ever know.

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‘I feel broken through the lack of support’ C

hristine Gilliver successfully petitioned the PFA for financial support to help meet the care costs for her husband Allan, who played for Huddersfield and Bradford City and now lives with dementia - only for it to be abruptly terminated at the point he needed full-time care.

Here, she discusses her heartbreak that her beloved ‘Gilly’ now needs residential care, the financial strain this brings, and why Head for Change’s financial intervention is invaluable to families like hers I distinctly remember reading a piece in a newspaper in November 2020 and I was absolutely incensed by it. The PFA had the nerve to say they were offering support to former players and their families who were now affected by dementia - my Gilly had been diagnosed in 2011 and we’d never had a thing.

I’d been in touch previously and had been turned down for support; there was nothing for people with dementia, apparently.

So after reading this piece, I got in touch again and they gave all kinds of excuses about how they didn’t have contact details for all former players, how the information as to who was receiving help was confidential. But after struggling so much for years to

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care for Gilly, I needed some help for him. We both did.

Dementia is the most horrible, cruel disease. To see someone so precious to you decline like my husband has, to the extent he is losing control of his mind and body, is worse than I can ever put into words. I try my best to be everything he needs but it is destroying me. I have been through times where everything seems completely black, I can only see darkness. It has left me completely on my knees.

So when the PFA told me in January 2021 they would support one week of respite care every two months, I thought it was amazing. By January 2022, as Gilly’s condition got worse, that increased to seven days a month, thanks to support from Dawn Astle. It helped so much, just that break was such a relief.

We’d spent a lot of our own money on adapting the house so he could still get around, but things were declining. I knew they were,

The loneliness feels . almost unbearable sometimes

but I just didn’t want to accept I couldn’t care for him on my own But then I was taken into hospital with an angina attack and everything changed. I’d been struggling with a sciatica-type condition for a long while, which made things very difficult in caring for Gilly, particularly when he now needed help to get out of his chair and support to walk any distance. If he’d have fallen, I couldn’t have picked him up.

But after I went into hospital, I was forced to realise I couldn’t do it anymore. My heart wanted to continue to so badly - but my head, and my children and my sister, who were so worried, made me realise the best option for everyone was to look at fulltime residential care for Gilly.

But while the respite care had been such a welcome relief, for which I was so grateful, the support from the PFA now stopped.

There was no help anymore.

The option was to find a care home within the local authority budget, and the PFA told us they wouldn’t pay top up fees.

Everything we’d had was now just cut off so suddenly.

We now had to look at how to finance care. All the money we’d saved and Gilly’s private pension was now going on his care. We’d never lived extravagantly, never

had fancy holidays or cars, but now this was our life. Rather than the adventures I hoped we’d be having in our older age, he was going to be in care, being looked after by someone other than me. The care home are wonderful but they don’t know him like I do. When I go to visit him and his hair has been combed the wrong way, or there are someone else’s clothes in his wardrobe, such little things can often leave me absolutely bereft.

My heart breaks every single day and the guilt I feel at him being in there is like a millstone round my neck. The loneliness feels almost unbearable sometimes.

The financial strain is very real.

I get so upset that, because of him playing football and doing

his job, we’re now having to spend his private pension just so he can be looked after. While respite care was very welcome, the nature of dementia is that it is degenerative, so of course anyone living with it will get worse and their needs increase. For there to be no support with residential care for when this time comes is just awful.

When Head for Change offered us some support, I couldn’t believe it. I’d given up asking for anything more from anyone, because once Gilly went into residential care, they didn’t want to know. But Head for Change did. Everyone there understands because they live this too. Judith Gates, whose husband played at a similar time to mine and who is

now in a similar situation to Gilly, understands exactly what I am going through. Just finding someone who understands is a relief in itself, but for them also to help us with the very things they know we need is amazing.

The way former players of my husband’s age are being treated is truly awful - these are the people who have made the game what it is today and who gave so much joy to so many football fans over the years. They don’t deserve this - they deserve so much better. The powers that be no doubt want to sweep a lot of things under the carpet, but my Gilly and so many others are the living reality of this situation - and families desperately need help now to cope.

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Understanding the impact of brain injuries: types, causes, and rehabilitation strategies

Types of brain injuries and causes A brain injury occurs when a blow or trauma to the head causes significant brain damage. There are different causes of brain injury that can range in severity from mild to severe.

Brain injuries are divided into two categories: traumatic and acquired.

A traumatic injury (TBI) is an injury to the brain that is caused by trauma to the head. This can be by anything, such as a fall, motor vehicle accident, assault, or a sports injury.

An acquired brain injury (ABI) is an injury that occurred at or since birth.

The brain can be injured as a result of a traumatic brain injury, stroke, brain tumour, poisoning, infection and disease, or alcohol and drug abuse.

Impact of brain injury A brain injury can impact an individual’s physical, behavioural, psychological and cognitive functions. The individual may experience mobility problems, behavioural and emotional changes and cognitive impairments, which can affect their daily life.

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Physical After a brain injury, brain function can be temporarily impaired, sometimes referred to as a concussion.

Whilst most people can make a good physical recovery, some can experience problems for months or even years after a brain injury.

Common physical effects of brain injury are mobility problems, spasticity, weakness or paralysis, sensory impairment, fatigue, epilepsy, and difficulties with speech.

Behavioural Brain injuries can have a significant effect on behaviour. This stems from damage to areas of the brain that regulate emotions and impulses, including anger, impulsive behaviour, self-centeredness, impaired awareness and even violence.

Psychological A brain injury can alter the way people feel or express emotions. It is common for individuals who have suffered a brain injury to encounter feelings of depression or other

emotional challenges. Feeling sad is a normal response to the changes an individual faces after a Traumatic Brain Injury however prolonged feelings of sadness can be a key sign of depression. Depression is a common problem and can be caused by factors such as physical changes in the brain or emotional response to injury.

The individual may also experience anxiety after a Traumatic Brain Injury.

For many, situations that require a lot of attention and information processing, such as crowded environments, heavy traffic, and noisy children, can make the individual feel anxious.

Feeling sad is a normal response to the changes an individual faces after TBI

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Rehabilitation strategies Rehabilitation is an important part of recovery for the individual who has sustained a Traumatic Brain Injury.

Various healthcare teams, including occupational therapists, speech and language therapists and psychologists, will work closely together to provide a comprehensive care plan, personalised to the individual. Families will also play an important part in the care and rehabilitation of their loved ones.

Neurological physiotherapy This is crucial following a Traumatic Brain Injury, in order to achieve the maximum potential recovery.

Neuro-physiotherapy can help with restoring muscle strength and joint stability, improve balance, reduce muscle spasms and restore independence and quality of life. Families can assist in providing emotional support, encouragement and motivation to the individual undergoing rehabilitation.

They can also assist with any exercises or activities that are recommended by the therapist.

Occupational therapy Occupational therapy is an effective form of rehabilitation as it can help the individual living with a brain injury to regain the physical skills they need to participate in work, school and daily activities. Families can help the individual to adapt their home and work

Neurological physiotherapy is crucial following TBI

environments to accommodate any physical limitations they may have.

Speech and language therapy The two main speech disorders that can arise from a brain injury are dysarthria and dyspraxia of speech.

A speech and language therapist can support people who may experience communication, eating, drinking and swallowing difficulties that can arise from their brain injury. The duration of speech and language intervention will depend on factors such as the severity of the injury. Families can play a crucial role in helping their loved ones to practice speech exercises and providing communication support.

Neuro-psychology A neuropsychologist studies the relationship between the brain and behaviour. They can provide treatment recommendations for behavioural, emotional, and cognitive problems that arise with a brain injury. Families can provide information about their loved one’s behaviour and cognitive functioning, which can assist the neuropsychologist in developing a treatment plan. They can also offer support and encouragement throughout the treatment process.

Dietician A dietician will be involved in the individual’s care if the individual with a brain injury needs to be tube-fed. A dietician can also help in situations such as fatigue, weight management, gut problems, tissue viability, dysphagia and loss of smell or taste. In some situations, families can provide

support in managing their loved one’s diet, and helping them to adhere to any dietary restrictions that may be necessary. If their loved one requires PEG (percutaneous endoscopic gastrotomy) feeding, families can work with healthcare professionals to develop a feeding plan that meets the individual’s nutritional needs and preferences.

Wheelchair service A Traumatic Brain Injury can lead to physical difficulties that require intense rehabilitative care. Some people will require a wheelchair service if their brain injury has led to them losing the ability to walk and position themselves. Families can help their loved one with the adjustment to using a wheelchair and assist with transportation to appointments.

How Cavendish Homecare can help We recognise the complex and challenging nature of brain injuries and the impact they have on the invididual and their families. Our team of experienced and highly trained nurses and carers work together with multi-disciplinary teams to provide a comprehensive care plan package personalised to each individual’s needs.

We understand that recovery is a long and ongoing process, and we provide support to the client and their families throughout the rehabilitation journey.

To understand more about how our services can help you, contact us and speak with a nurse manager that can guide you through the process to achieve care at home for your family or friend after a brain injury.

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Speech Therapy Interactive: ‘communication is everything’

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hrough the adoption of a range of diverse and accessible means, Speech Therapy Interactive is supporting people with communication, cognitive and swallowing difficulties to recover vital skills. Here, Tina Kad and Marjana Akhtar explain more.

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Who is Speech Therapy Interactive?

We are Speech Therapy Interactive – an independent, award-winning speech and language therapy practice. We provide assessment and therapy for adults with speech, language, communication, cognitive and swallowing difficulties, as a result of neurological conditions (e.g., stroke, brain injury, dementia etc) in the Essex and East London region.

and decided the best path for her to be able to juggle her life as a new mother and still continue with her career is being able to work for herself. ‘’Speech Therapy Interactive allows me flexibility and quality time with my son (my Drive and my Why), creativity in my profession and a choice of providing quality client centred therapy.’’

Speech Therapy Interactive is approaching its second year anniversary and is expanding! In October 2022, we hired our first apprentice in collaboration with the University of Essex. Our apprentice, Marjana Akthar, is amongst the first cohort to be enrolled for the Speech and Language Therapy apprenticeship program.

Background – how was Speech Therapy Interactive born?

After 10+ years of working within the NHS, our founder, Tina Kad decided it was time to venture out and work for her own private practice. She had just given birth to a baby in lockdown

What do we offer?

We offer a variety of services for adult patients, including: speech therapy assessments and differential diagnosis, face to face therapy, teletherapy – online speech therapy assist in mental capacity assessments,

speech Therapy clinical supervision for students and NQP’s, speech therapy education and training for healthcare professionals as well as speech therapy services in English, Hindi, Urdu and Punjabi.

A closer look into our services As mentioned previously, we work with adults with acquired and progressive neurological conditions such as stroke, brain injury, dementia and so forth, who have been diagnosed with the following conditions: 1. Dysphasia Dysphasia/aphasia is a complex language and communication disorder resulting from damage to the language centres of the brain, typically the left side of the brain.

This damage may be caused by a stroke, a head injury, a brain tumour or another neurological condition.

This causes difficulty with: speaking (expressive aphasia), understanding speech (receptive aphasia), reading

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writing, using numbers, dealing with money and telling the time.

Global aphasia: severe difficulty with understanding and producing language Broca’s aphasia: difficulty producing language with relatively strong understanding Wernicke’s aphasia: difficulty understanding with effortless, and error filled speech.

Symptoms include: difficulty understanding what people say, difficulty understanding written words and meaning of things, difficulty communicating thoughts, ideas and messages to others, difficulty finding the right word when speaking or writing, eliciting non-words (neologisms).

We take a close look at your language, understanding of words, reading and writing to find out your areas of strength and difficulty. We help you find useful and effective ways to communicate with your family and hospital staff. We provide therapy to improve your speaking, understanding of words, reading and writing 2. Apraxia (of speech) Apraxia of speech is difficulty with planning, organising and sequencing speech movements. It is when you can’t move the muscles in your face, mouth and throats in the right order to produce speech but might be able to move the muscles in insolation.

This may make it difficult for you to speak and for others to understand you.

Symptoms include: not being able to say words clearly, especially when someone asks you to, speech changes and words sound different every time you say them, you try to self-correct errors in speech as you are aware of them, you hesitate between words, you make several attempts to get the right mouth shape to say a word (articulatory groping), you are able to say things clearly when you recite them in a list (like days of the week or numbers), but not when you’re asked to say them on their own (automatic speech), not being able to speak at all sometimes.

Following assessment, the speech and language therapist will assess the nature of your apraxia of speech.

You will be provided with a therapy

programme specific to your needs.

Therapy may focus on a) Strategies to overcome difficulties b) Activities to reduce impairment c) Overcoming impact of apraxia of speech on your lifestyle using AAC. 3. Dysarthria Often referred to as slurred speech.

Dysarthria is an acquired speech disorder following a stroke and other forms of neurological injuries. It is a physical speech difficulty, due to weak, imprecise, slow and/or uncoordinated control of the muscles used for speech. This includes muscles in our face, mouth, throat as well as our breathing.

Symptoms include: speech sounds slurred making it difficult for others to understand, words may sound like they are running into each other, voice may sound hoarse, difficulties controlling loudness of their voice (too soft/too loud), difficulties controlling rate of their speech, speech may sound better when saying single words or short phrases, lack of intonation/inflection in speech.

Therapy may include exercises to improve oro-motor exercises, diaphragmatic breathing exercises focusing on breath control and volume, articulation and speech intelligibility in conversation using strategies to increase the speech clarity.

4. Dysphagia Dysphagia is the medical term for swallowing difficulties. Some people with dysphagia have problems swallowing certain foods or liquids, while others can’t swallow at all. If you have an unsafe swallow, you can be at a risk of aspiration (this means food and drink going down the wrong way into your windpipe rather than your food pipe). This can give you a chest infection which can be fatal.

Symptoms include: being unable to or difficulty to swallow, having pain while swallowing, coughing or choking when eating or drinking, bringing food back up, persistent drooling of saliva, being unable to chew food properly, ‘gurgly’ wet sounding voice when eating or drinking, having to cut food into smaller pieces/avoiding certain foods because of trouble swallowing. Over time, dysphagia can also

cause symptoms such as weight loss and repeated chest infections.

Speech therapists would help by carrying out swallow rehabilitation exercises, providing education re: compensatory strategies to facilitate safe swallow, modifying patients diets/fluids as well as exploring alternative ways of feeding to ensure the patients are meeting their nutrition, hydration needs as well as improving the patients quality of life.

5. Cognitive communication disorders Cognitive communication disorders can be a difficulty with any aspect of communication that is affected by disruption of cognition (making sense of the word through understanding, organising, interpreting and storing).

Some examples of cognitive processes include thinking, attention, memory, organisation, problem solving/ reasoning, executive functions and social skills.

Symptoms include: difficulty with attention - trying to concentrate and staying focused on task, difficulties with alternating or divided attention, difficulty with memory – working memory, short term, long term, difficulty with planning, sequencing and problem-solving, difficulty with multi-tasking, reduced social communication skills and acknowledging social cues – interrupting conversations, reduced insight into their difficulties.

Cognitive rehabilitation therapy – we can provide treatment to help with memory, attention, planning and problem solving. A part of therapy is sharing strategies to manage these difficulties such as creating memory books, target executive functioning skills, and help them establish a routine/schedule to help with cognitive processing, reintegrating the patient back into the community focusing on impairment and functional based therapy.

So what do we do to help with these conditions?

Speech Therapy Interactive provides detailed assessments and diagnosis for individuals with any of these conditions and follows up with quality care through therapy plans and sessions to target specific areas. Our approach to providing therapy >> 87

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is through a holistic perspective and is very much person-centred. We believe in shaping our sessions around what the individual’s aims and goals, whether that is to be able to communicate with your friends again, continue with your hobbies, and regain your independence. We also aim to involve family members and loved ones and share strategies for better outcomes.

Our aim is to make Speech Therapy services more inclusive of our diverse communities As a speech and language therapist working within the NHS in hospital settings, Tina took on the role of an interpreter for patients who were not able to communicate in English with other healthcare professionals. Tina expressed that on the days she was not available, there were cases where there would be a barrier to communication, or misunderstandings rising from language barriers between the patient and healthcare professions.

This made her realise the importance of having the availability of multilingual, multi-cultural resources to not only help the patient, but also better equip healthcare professionals so they have the ability to provide care and treatment.

The resources that we have created/ are in the process of creating We created the following multilingual and multi-cultural resources to allow make our assessment and therapy services accessible to the SouthAsian community: Picture description tasks using South Asian illustrations Communication aids in Hindi, Urdu and Punjabi.

Flashcards (nouns and verbs) in Hindi, Urdu and Punjabi.

At Speech Therapy Interactive, we believe continuously developing ourselves as therapists, through our service and our provision of more inclusive therapy and assessment tools, is KEY to making this profession better.

We would not only like to increase the cultural competence of the existing demographic of speech and language therapists, but also promote it and encourage more prospective students from all walks of life to pursue this as a career: Diversifying the profession 88

so the face of Speech and Language Therapy reflects our beautifully diverse society!

The benefits of picture description tasks for assessment and therapy for adults with communication and cognitive difficulties What are picture description tasks?

Picture description tasks (PDT) are tools that are used by speech and language therapists to help them conduct an informal assessment of a potential patient who may have communication difficulties due to different speech/language/ cognitive and communication disorders. (Zingeser & Berndt, 1990). They can be used by patients of all ages, ranging from toddlers to senior citizens. They can also be used within therapy sessions.

They consist of different scenarios or picture scenes of various situations represented in a visual pictorial form.

This could be either animated or a photograph of a real-life scenario.

The pictures can range from a simple picture of a shop to something as complex as a crowded grocery store, where the patient would be asked to name objects or name actions they see. Cooper (1990) states that picture description tasks provide a ‘standardised approach to language sampling.’ Because the use of picture scenes are open-ended and versatile, it opens a window of opportunities for the patient to express what they see and challenges them to use various skills such as visual, comprehension, and language skills. This consequently targets various aspects of their speech-language and cognitive-linguistic skills. In the following paragraph, we discuss in detail all aspects of the language, comprehension and cognitive skills that PDT targets specifically within the context of an adult patient accessing SLT services, and how a lot of these can interlink.

What can they be used for?

They can be used for aphasia, apraxia, dysarthria and cognitive communication disorders.

What do PDT target?

PDT target vocabulary, verbs, nouns/ pronouns, prepositions, adjectives, sentence formation, WH-questioning,

following directions, narrations, conversations, memory and attention, inferencing, reasoning and problem solving and speech intelligibility and fluency.

Why do we need culturally diverse resources?

• Using standardised assessments is limited.

• Increase cultural competency of speech and language therapists.

• Cultural relevance in assessment and therapy • The importance of respecting culture and identity • Misconceptions on bilingualism/ multilingualism

Hindi, Urdu and Punjabi speakers in the UK The statistics show that after English and Polish, the third largest population of the UK speaks Punjabi (Pert & Bradley, 2018; Census, 2011).

There is a large demographic of South Asians residing in the UK, and amongst them, the most common languages spoken include Hindi/ Urdu and Punjabi. Thus, the need for culturally and linguistically appropriate resources are vital for individuals within the South Asian community who need access to SLT services for assessment and therapy.

Strokes are the leading cause of speech, language and communication disorders and research has shown that individuals from an ethnic minority background are more susceptible to suffering from a stroke.

Despite this reality, there is a vast disparity of culturally appropriate

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resources in the UK for assessment and therapy in speech therapy. These resources are a starting point to cater for a community that is not currently being catered for in the most effective way possible.

Informal study We conducted an informal study to test the following hypothesis: the use of culturally appropriate resources within the speech and language therapy profession has an impact on the assessment and progress of ethnic minority clients. The focus group consisted of a total of 15 South- Asians aged 65-85 with a mixture of both males and females. All participants that were chosen had no speech or language needs/difficulties.

The results indicate that when resources are culturally appropriate, individuals from that respective background are more likely to engage and elicit better speech and language in comparison to the one to which they couldn’t relate (Christmas).

What are the benefits of having diverse, multilingual resources?

• Inclusivity – individuals who speak Hindi, Urdu or Punjabi as a first language will be able to overcome the communication barrier of speaking a language other than English. Being able to communicate in their own language will give them more confidence to share their preferences and decide for themselves. It will encourage them to engage in conversation, thus im-

proving their communication skills.

• Cultural competence tool for healthcare professionals – Due to the English translation provided with Hindi/ Urdu/Punjabi, this allows healthcare professionals to communicate and understand their patients of multilingual backgrounds, if there is no availability of a translator/ interpreter.

This means being able to communicate instantly.

• Celebrating diversity – diverse resources such as these do not only assist both the patient and the healthcare professional in communication, but it also unites us in our diversity and celebrates our multilingual, multicultural society.

To find out more, please visit speechtherapyinteractive.co.uk.

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We require experienced Occupational Therapists and Case Managers specialising in all clinical areas, especially those working in the fields of neurology, stroke, brain injury, spinal injury and cauda equina syndrome, who are confident, have excellent communication skills (verbal and written), enjoy a challenge, are intrigued by the forensic nature of this work, and above all are keen to learn new skills.

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