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Interviews

Out of the shadows

A charity which encourages brain injury survivors to put others first is helping them to re-find their place as valued members of society. Deborah Johnson reports.

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“I was hearing the same story over and over again,” says neuropsychologist Dr Sherrie Baehr.

“It was one of isolation, sadness and loss of direction.”

These accounts came from brain injury survivors who, with depressing regularity, told Sherrie how society was rejecting them post-injury.

After one such tale too many, she decided to take affirmative action by launching a charity that enables people with brain injuries to help themselves by helping others.

The Silverlining Brain Injury Charity has, since being established in 2006, helped countless people across the UK to rebuild their confidence and sense of purpose and achievement through participation in activities in the community.

It’s an approach Sherrie developed to help people channel their many emotions into something purposeful; which has the dual benefit of helping communities and the people who live within them, while also giving the opportunity for people with brain injuries to take part in structured activities which can help their ongoing recovery.

“People might not fight for themselves as hard as they’ll fight for someone or a cause they care about. And because brain injury rehabilitation doesn’t end in six months, it doesn’t end in two years, it’s a forever process – why not make it have meaning and why not use it for the greater good?,”
says Sherrie.

Statistics show that someone in the UK is admitted to hospital with an acquired brain injury every 90 seconds – with such incidents up 10 per cent since 2006.

Sherrie is determined that Silverlining is a place for everyone, however they acquired their neurological issue and whatever their rehabilitation need.

“We do not discriminate in terms of how someone got their brain injury.

“We could have someone with a stroke, a brain tumour or a traumatic brain injury. We have people with MS, people with Parkinson’s.
If there’s something wrong with your brain, you’re welcome at Silverlining.”

Currently based in London, the charity also has branches in Surrey, Oxford, Bristol, Bath and Cardiff, and engages hundreds of people across the country.

Figures from the Centre for Mental Health suggest that good recovery rates for brain injury patients are as low as 14 per cent.

Against such statistics, Silverlining aims to provide an innovative route to better outcomes.

Its activities are varied, with a strong sense of purpose, ranging from raising funds and organising fundraising events for victims of domestic violence and for cancer charity Macmillan; to creating serenity gardens, and organising book and art clubs.

The charity even visited Namibia is 2018, its biggest project to date.

It took 23 of its ‘Silverliners’ to visit a school which was in desperate need of assistance.

During their short visit, the group made a great impact by teaching the children life skills and also got involved with the indigenous San tribe, by joining in their traditional ways of life.

As well as taking part in such enriching experiences – a trip to Kenya is lined up as the next adventure – Sherrie points to how the charity can be crucial in enabling people to rediscover their sense of direction.

“We had one girl who was a dentist prior to her injury, but afterwards she wasn’t able to practice dentistry.

“She was, however, able to get lots of dental toothbrushes and such things for children in Namibia, to give them a toothbrush and teach them how to take care of their teeth.

“That was really meaningful. People feel like there’s an awakening of what they can do.

“Where so often in brain injury the focus is on what I’ve lost, Silverlining really tries to shift that to ‘Hey, but you’re alive, and you must be here for a reason. What can you do to make a difference?’”

While Silverlining is making great strides in helping to change the outlook and positivity of brain injury survivors themselves, Sherrie admits there is work to be done in society as a whole in changing the perceptions of what roles they can play.

“I worked with a medical student who had a brain injury during a simple medical procedure where it went wrong. Her brain injury was quite severe but she was determined to get back to work.

“One day, we finally got her into a volunteer post. She called me a week later, saying ‘Sherrie, I’m going to quit. I can’t sit in the corner and shred papers for the rest of my life.’

“One of the sad things about that was that she was labelled as lazy by her colleagues, which was terribly sad because she was probably working ten times harder than anyone else.”

While running a charity which helps people with brain injuries is never without its challenges, Silverlining’s focus on the ongoing support it provides to members is proving central to its success.

“Because of the group support and experience, we have not had as many behavioural problems as you might have expected. If you’d asked me 12 years ago, I would have expected a lot more behavioural outbursts,” she says.

“We have to make sure we have the right amount of volunteer support to make sure that we understand the triggers, we manage them and keep everybody safe.” Currently, the charity is self-funded, with members and their families being a great fundraising resource, although it is looking to access more funding to enable its work, and crucially, opportunities for those who need them, to continue.

Sherrie, who combines running the charity with her full-time job, says: “We’ve never had a bit of Government funding, it’s all been Silverliners and their families who have done walks, runs, cake sales, bake sales, quiz nights.

“We are currently doing research on the effectiveness of our different interventions so that in the future, we hope to be able to prove what we’re doing is useful and get greater funding sources to do more.”

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Interviews

Cognitive Rehab Coach – harnessing the power of remote therapy

Inspired by seeing the impact digital could make in rehab, Natalie Mackenzie has gone on to build an internationally-successful business

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Out of the necessity to pivot to digital during the early days of the pandemic, an international online business – The Cognitive Rehab Coach – has been created to support people living with the impact of concussion and brain injury around the world. 

The Cognitive Rehab Coach was born from seeing how effective remote support could be for clients who are eager and able to embrace it, with people from the United States to New Zealand now benefitting from therapy delivered from the UK. 

Founder Natalie Mackenzie, a highly-esteemed cognitive rehab therapist and also director of BIS Services, runs both individual and group sessions across the globe – something she admits she embarked on from the greater acceptance of the quality and impact of virtual therapy which has come from COVID-19. 

“I still do client work and love doing client work, but the challenges of running a business often mean you can’t do as much as you’d like. You can get very lost in the running of a business when you’re a clinician. So this has been very interesting and led by the changes in digital offering we’ve seen from COVID,” she says. 

“Through delivering therapy this way, I can do a large amount of client work with much less travel time and greater reach.

“With the BIS, we can spend anywhere between two and eight hours with a client. I’ve got clients who are two hours away, so I can spend six hours of my day only seeing a client for two hours. 

“But with the Cognitive Rehab Coach, I can spend six hours online with six different different groups or six different clients. It’s kind of brought back the reason why I love the work that I do.

“Clients can be a bit more autonomous and self-led with the learning and assignments I give them, so they can be shorter packages, but with the same level of information they’re being given. 

“That also led on to me doing group programmes. That kind of one-to-many offering through small groups, in addition to the one-to-one sessions, are proving to be really effective. 

“But it was through what we did with BIS that showed me what was and wasn’t possible. The virtual timetable was a huge learning curve for me in terms of what clients will tolerate right in a group online setting – which at BIS is not a lot – whereas the concussion and post-concussion syndrome demographic find that slightly easier. There have been a lot of lessons.”

And the lessons in what was possible also extended into what was essentially a ‘needs must’. 

For many clients at BIS Services – which delivers innovative in-person cognitive rehabilitation to clients living with brain injury and neurological problems across the country – the experience of digital adoption into therapy was rather more challenging. 

“We did take our virtual timetable online for a period of time, we did pivot to adapt to the challenges of staffing and keeping clients and staff safe,” she says. 

“But now, the only time we go digitally is if someone is in isolation and we can flip back into the online support. We do face the same challenges with engagement and being able to functionally practice things with clients, but at least we know it will be for a short period of time. And the transition is much easier now, too. 

“But for BIS and our team of RAs (rehab assistants), all of whom have been specifically matched to each client, wherever possible, we’ll do face to face. But although that’s from a therapy point of view, that’s not to say digital hasn’t been really important in many other ways.”

But while Kent-based BIS has not adopted digital as a core part of its therapy offering to clients, it has proven to be effective in other ways. Through the creation of online events and opportunities, clients continued to be challenged and stimulated. 

“Our weekly quiz night became a therapeutic activity, as well as a bit of fun,” says Natalie. 

“We had a group of people who really got on well, but you’d probably never have put those people in a room together. It was the one it was the one activity that we kept going for the longest because clients were so engaged in it. 

“We rotated themes and gave clients the opportunity to write a quiz themselves, and we know hours of work went into that 45-minute quiz. It was a lovely thing to see.

“We also did a couple of comedy nights where the clients did comedy for us, and we would record it for them. I thought that was really brave to do that in front of your peers. Then the following week, the client would then review it as part of their learning to see what they wanted to improve on.

“These were ways in which Zoom did really deliver some great benefits to us.”

And in terms of its impact on how BIS operates, technology has also delivered benefits in terms of staff training and supervision. 

With 45 rehab assistants across the South of England, and extending as far north as Manchester, the opportunity to unite the team online rather than in person has been a very welcome opportunity. 

“They’re all so busy with clients that to even find one day a quarter where we bring everyone in for training can be really prohibitive,” says Natalie. 

“But now, I’ll deliver it live for any staff who can’t be here in person, and then it’s made available on our virtual library. For supervisions too, you don’t want to have people coming down from Manchester, spending all those hours travelling, when you can do it online now.”

Online training and learning has been a key area of development and acceptance, within BIS and for countless other organisations around the world. For Natalie too, she has embarked on her own digital learning experience, securing qualification as an ADHD coach. 

“I have a lot of brain injured clients with ADHD, but there isn’t an ADHD coaching course in the UK. I ended up doing a year-long course in America and the ability to train digitally has been amazing,” she says. 

“While the opportunity would have been available before COVID, I guess it wasn’t as accepted, my preference would probably have been face to face. But now, there is much greater awareness and acceptance, because it works and we’re all seeing that.”

Going forward, digital will continue to be a key part in the administration role of BIS, and of course will be fundamental to the continued growth of the Cognitive Rehab Coach – although the early experiences of COVID showed Natalie and her team the need to avoid becoming over-reliant on its use for some very human reasons. 

“In clinical work, we’re not used to being on computers for six or seven hours a day, let alone the challenges of talking pretty continuously for that long,” says Natalie. 

“We had really bad headaches and were just so tired, we even started having problems with our vision. I remember losing my voice for a couple of days too. 

“But now, we have got into what I think is a good working pattern, where we can flip to digital for our clients if we need, but we’ve learnt what works and what doesn’t. We are now using that to our advantage and making it work best for everyone.”

  • Natalie will be speaking at the Virtually Successful conference next week, organised by Remote Rehab in association with NR Times. For more information and to sign up, visit here

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Interviews

Think Therapy 1st – ‘Never say never’

NR Times learns more about the Specialist Rehabilitation Occupational Therapy provider’s ‘can do’ approach to rehab

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‘You’ll never be able to’ is a phrase the team at Think Therapy 1st readily admit to actively fighting against. It certainly isn’t in their vocabulary when it comes to how they work with clients. 

“So many people are almost written off by medical professionals, even at the start of their rehab journey, but you’ll never hear that from us,” says managing director Helen Merfield.

“Instead of just saying ‘you’ll never be able to walk again’, if it’s remotely possible, we’ll do absolutely everything we can to get them walking again.”

And Specialist Rehabilitation Occupational Therapy (SROT) provider Think Therapy 1st has a stellar record when it comes to delivering such life-changing outcomes for clients across the country, in home and community-based settings.

From the woman told she’d never be able to walk again, who, following support from the team, was able to walk three miles around an air ambulance field with a walking frame to raise money for their charity. To the man told he’d never be able to live unsupported, who now lives completely independently and looks after his son every other weekend.

“We also had an 84 year-old lady who played badminton five or six times a week; I think she was semi-professional in her youth. She was told ‘you’ll never play badminton again’ and that destroyed her soul to start with,” recalls Helen, an ex-military nurse.

“Luckily, we said ‘Don’t listen to them. We’ll get you playing badminton again’. And we did. Five days a week.

“We had to adapt her serve, sometimes she used a chair, but she was playing and she was happy, and that’s exactly what we want to achieve for our clients.”

That commitment to overcoming the seemingly impossible is what Think Therapy 1st (TT1st) believes is its real difference.

By putting clients at the heart of the rehab, empowering them to take the lead on what they want to do, the TT1st OTs combine challenging and stimulating activities into therapy sessions which will enable them to progress.

“We wrap therapy around small, everyday tasks, and then build on that so they can get to where they need to be and get their lives back on track,” says Helen, whose fellow owner-directors are two OTs and a social worker.

“We explain the process of what we’re doing and why we’re doing it. So, for example, we might go on a woodland walk, which is maybe something they used to enjoy but haven’t done for a long time, they’ll also be working on their exercise tolerance, their coordination and general mobility.

“We’ll explain what we’re doing and why we’re doing it, and then they’re much more engaged in the process.”

TT1st also has a dedicated Children and Young Adults Service (CAYAS), which delivers specific paediatric support, provided with the same ‘never say never’ determination of its adult service.

“We had one boy who had a head injury, but prior to that he was up at 5am every day doing his newspaper round,” says Fiona Peters, CAYAS service lead.

“So, one of the first things I did with him was get him to draw me the map of his route, and then we went to walk it. And that helped him realise he’d forgotten part of it, but it was also really healing for him because he dropped in on a few people he used to deliver the newspapers to.

“Working with parents, I think it’s about drip feeding information. At first, they can be hypervigilant, wrapping their child in cotton wool, which

Helen Merfield and Fiona Peters

is understandable, protecting them from challenges.

“Our role is to support the parents to feel confident in confronting challenges rather than shy away or deny their children the opportunities these present to bring about positive change. It’s about ensuring the parents are aware of and engaged in the therapeutic process.”

“We really focus on embedding the learning, not through reams of paper or stuff to read on the computer; we help them to feel it, to understand it. And I feel like that’s where our speciality lies, in supporting them to understand their situation and to know where they can head with it,” says Helen.

“In what we do, the OT would be the head of the multidisciplinary team but we are standing arm in arm with the client.

“If they need physio, speech and language therapy, neuropsychology, any other modalities, the OT would work with them to help them engage those people. We make sure that we are aligning our goals in a really multidisciplinary way.

“For example, any neuropsychology outcomes would be really informative for our process of what to concentrate on with the client. We try to make sure that the goals are aligned so that it works in the client’s best interest at all times.

“But I think where we really do go that extra mile is in building in a relapse prevention plan whilst we are still involved, so people recognise what they’re doing, while they’re doing it. They are at the centre of the process – we don’t just want people to have things done to them, we want them to be part of it.”

Fiona adds: “Historically, people have been passive recipients of the medical model, just waiting for medical recommendations. We are changing the locus of control so the clients are full participants in their own rehab journey.

“We help our clients understand, that in order to get to the kitchen to make a cup of tea, which is what they really want to do, they could be doing things of benefit to their recovery – flexing their leg, building their standing tolerance, co-ordination, thinking, planning, and other executive functions as well.”

TT1st are also very definite about the time period they spend supporting a client – a maximum of 12 months of hands-on therapy, with up to three-months transition period.

“The analogy I like to use for transition is that it’s like having stabilisers on a bike, once you take the stabilisers off, you don’t just let them go and hope for the best,” says Helen.

“We want a person to be as independent as possible when we leave; they always know they can come to us if there’s a crisis or if something new is happening in their life, but the purpose of what we do is to train them and empower them to be autonomous.”

TT1st also has dedicated functional management of pain, fatigue and anxiety programmes. HELP – Holistic Education for Living with Pain, HEAL – Holistic Education for Anxiety Liberation, and  FEEL – Fatigue Education & Exploration for Living which correlate with NICE guidelines.

“We were finding that a lot of our clients suffered from pain, fatigue and anxiety when we met them, and the impact of having been left for a long time, without any support for this, had made things worse,” says Helen.

“People were being referred to us late; they’ve often become quite entrenched in the medicalised version of their health, and pain becomes a debilitating factor.

“The quicker we get them, no matter what the injury, the quicker we can get them better, because they haven’t become entrenched in the medical model.

“In our experience, pain is something doctors often disregard, but through holistic education, we can help make lasting changes to how people control and live with pain.”

The business, established six years ago, has built a strong reputation for its service – and particularly its outcomes – and continues to expand. With a core team of in-house OTs, it has growing numbers of associates across the country who deliver its bespoke support to clients.

“Cases come to us from all over the country, and we identify local OTs with the appropriate skills to work with each client,” says Helen.

“One of our in-house OTs acts as the long-arm mentor on every case. We meet monthly to review each case, and every single one is discussed by all the team. So, there will be seven OTs and a nurse looking at all the cases, to make sure they’re on track.”

Fiona adds: “I think OTs are used to working within boundaries, but when they join us, they suddenly see they have limitless potential.

“We believe that if you can clinically reason why something is beneficial to a client, we can generally find a way of supporting that, and finding the funding to achieve it.”

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Case management

BABICM – rising to the post-pandemic challenges and opportunities

Vicki Gilman, chair of BABICM, shares her priorities for the organisation as case management looks to a new future

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Vicki Gilman has taken up the post of chair of the British Association of Brain Injury & Complex Case Management (BABICM) at a hugely important time as case management moves into a new post-pandemic chapter, following an unprecedented period where case managers rose to the diverse challenges presented by COVID-19 and helped to create a new future. 

A future where technology and virtual communication will feature like never before; where the need to work in collaboration has never been greater; and where the creation of the Institute of Registered Case Managers (IRCM) will enable registration of case managers for the first time. 

While undoubtedly an exciting time with huge potential for case management, the challenges – and opportunities – for BABICM, as it too builds for the future on the foundations of its 25 years of expertise, are plenty. 

“Becoming chair was something that was first suggested to me about three years ago, and at that time I had no idea, as no-one did, that we would all see such huge change in our lives,” Vicki tells NR Times. 

“There were several things in the back of my mind then that I thought might be key themes – some of them remain the same despite what has happened since, although by no means all of them. I think a lot has been learned over the past 18 months that I don’t think we will go back from. So, in many ways, this marks a fresh start.

“I’m immensely proud of how the whole case management sector responded, how we stepped up to the challenges and with such speed. Case managers are used to looking at complex scenarios in unique circumstances and working to find ways forward within the context of each case.

“The pandemic served up additional challenges which prompted a lot of innovation and different and new thinking, with plenty of opportunities. 

“As ever in case management we have taken the learning from everything we do, but this time case managers – along with everyone else – were juggling the unique changes in their own lives such as homeschooling children and supporting friends, neighbours and family members whilst continuing with their highly complex and confidential work to support each individual case by case.”

Vicki, managing director of Social Return Case Management, takes over the BABICM chair from Angela Kerr, who is now chair of the IRCM. BABICM will continue to play a central role in the ongoing development of the body, as a founding member, which hopes to secure accreditation from the Professional Standards Authority (PSA) in the near future.  

An experienced case manager, health entrepreneur and clinical specialist neurophysiotherapist, Vicki spent six years on the BABICM Council, returning last year for a preparatory period before taking the chair.

Building on her experience of specialist rehabilitation, expert witness work and case management and being part of BABICM, while taking inspiration from the events of the past 18 months and impending future changes, Vicki has identified a number of priorities to address during her time at the helm. 

  • Equity and belonging 

“I have starting educating myself to a greater degree and have had a lot of conversations with people who know a lot more than me about equality, diversity and inclusion,” says Vicki.

“This is actually quite challenging and I don’t personally know enough yet. I do know that both the organisation and I need to do more. As I go on my journey, it is my aim to find allies and to bring other people into learning more with me. Together we can make BABICM better place.”

“It follows that our increasing membership means we have greater diversity, and it is not enough to say ‘We don’t discriminate’.”

Vicki says equity and belonging must be sentiments which underpin BABICM. “It is a really important to ensure a greater understanding is threaded through the work of BABICM,” she says. 

“For me, equity means more than equality, and we want to help people feel they belong here. It’s not enough just to say these words.” 

  • Collaboration

“We need to strengthen links we already have and collaborate with other organisations who are important to our members through the work they do,” says Vicki. 

“Angela has done an amazing job to strengthen and move the organisation forward, of identifying organisations and allies we should be working in collaboration with and creating links with people at the right level – organisations such as the CQC, Court of Protection, UKABIF, some education establishments, to name but a few. 

“There are lots of ways we can deepen and develop on that, and as we come out of the pandemic there will be more opportunities. Zoom calls are really time-saving and effective, but hopefully we will also have the option to do things in person again going forward.” 

  • The future as a profession with registration

One of the most significant changes in case management, the creation of the IRCM, is set to professionalise and regulate case managers in a sector-changing move. 

“We will continue to support the goals and development of the IRCM, it is by no means done and we need to continue the work here,” says Vicki. 

“We are fully supportive of the direction of travel and fully endorse registration for case managers. This is a way for the public to be protected specifically in the realm of case management and for case managers to be able to demonstrate that.”

  • Training and learning

“I want to continue the development of the high-quality learning and training opportunities available to our membership, but also to those outside,” she says. 

“We aim to keep it very relevant to current clinical and professional needs, keeping ahead of the curve and making sure that what we are offering is of the highest quality. As professionals working with complex cases, I can only see that need developing further. 

“In the last few years BABICM has really showed its strength as the leading provider of education and training for case managers working with complex cases. The feedback we’ve received for our courses has been tremendous and that has continued even during the pandemic. Training will remain key and grow in importance.”

  • Research 

“I’m very keen to increase the involvement of BABICM and its membership in research around case management related issues. I want us to lead the way in with research into evidence-based practice for people with complex needs,” says Vicki. 

BABICM has recently been involved in a number of research projects, working alongside the University of Plymouth. In yet to be published findings, the team has studied how case managers and clients alike have adapted to the pandemic. 

“There is research out there which supports the work of case management, but we are taking greater responsibility to add to that evidence base and that is something I foresee will increase and needs our members to be involved in,” she says.

“This will of course add even further to our library of resources to support the work of case managers.” 

  • Providing useful resources to members 

“I see us to stepping up in provision of information to assist across our membership within legal, clinical and professional aspects of their work,” says Vicki.

“Those involved in the case management of complexity and those working with case managers need resources that are tailored to their needs. 

“We already do this in many ways via our website with recorded webinar content, upcoming training and development events, publishing our standards and competencies and signposting and links to other sources of support regular bulletins. Our website is proving a very useful resource library which is seeing growing traffic, as it assists our members and others. 

“As our members apply for registration with the IRCM there will be an even greater requirement to demonstrate what case managers are doing and whether they are meeting the standards, so we need to continue to build relevant resources to support this need.”

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