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State of the rehab nation

The driving force of rehabilitation research in America has big plans to speed treatment development and improve skills, its outgoing president Dr Deborah Backus tells Andrew Mernin.

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Deborah Backus is navigating rush hour traffic when she takes a cross-Atlantic call from NR Times.

She’s understandably busy. The organisation she oversees is about to host the biggest rehab research event on the planet. But president of the American Congress of Rehabilitation Medicine (ACRM ) is just one hat she wears.

Deborah (pictured) is also director of MS Research at the Shepherd Center in Atlanta, Georgia. This is among the top 10 rehab hospitals in America, specialising in brain and spinal injury and neuromuscular conditions.

A few days after our conversation, the end of her ACRM presidency will be officially marked on stage in Chicago at the organisation’s annual congress – the global flagship event in rehab research.

She’ll remain deeply embroiled in the work of the group, however. The ACRM aims to improve the lives of people with disabling conditions, by providing researchers with the tools they need to carry out rehabilitation studies.

Part of its remit is to seek out more funding for such projects. “We work with funders, on a national level and in foundations in different areas, to get more funding for research. This is definitely a challenge as we move forward and I suspect its is all around the world too.”

Another crucial role of the organisation is to aid the translation of evidence into clinical practice.

“We work to disseminate our findings and provide a forum for researchers to help inform clinicians and help them to translate that evidence into practice.

“Even if we do that at our very best, we’re still a little bit at the mercy of the payers (which fund rehabilitation in the US). The challenge is to figure out the best way not only to get the information to the clinicians treating patients, but also to the people making decisions about reimbursement and which services are paid for.”

Deborah believes the progression of evidence from the lab into the lives of rehabilitation patients is “improving, but we still have a way to go”.

“We’re still learning the best, most meaningful way to translate evidence into practice. Partly we do this through our annual conference, but we are also launching a training institute to reach those frontline clinicians and educate them about the evidence-based practices.”

Other such measures include sharing research findings in webinars, on social media and in the ACRM’s two published journals.

“In our the Archives of Physical Medicine and Rehabilitation we also have information and education pages which present information on evidence based practice in a meaningful way for patients, and clinicians to give to their patients.

“We’re really trying to use every forum to help get the evidence out there.”

The ACRM lobbies politicians and other influencers to further the cause of rehabilitation research and rehabilitation generally.

“We have a policy committee which tries to talk to policymakers in Washington DC. We also work with clinical and patient advocacy groups to help them understand how to fight their case based on evidence. We will advocate for different bills – legislature that impacts not only rehabilitation research, but rehabilitation care if it’s evidence based.

“We do have influence but it’s a marathon, not a sprint and I think we have to continue trying to keep those conversations open and discussions moving forward.

“We definitely have had people at the National Institutes of Health who are very interested in helping to develop the rehabilitation research agenda and supporting the work that we’re doing. Every time we get somebody in our corner, we try to use it to take a step forward.”

Is encouraging consistency of rehab services across the US another of ACRM’s biggest challenges; considering the sheer size of a country which is home to over 6,200 hospitals?

“Our evidence and practice committee is very rigorous in evaluating the research and then helping to develop guidelines to influence tactics. So in that way, we’re trying to improve the consistency across America, but it takes a lot of manpower and resources to develop those guidelines.

“We’re supporting research and then helping it to be carried out in the most rigorous way – and then taking that information and evaluating it to help to develop guidelines.”

Of the rehab research currently underway in the US, which areas particularly excite Deborah? Unsurprisingly given her specialism at the Shepherd Center, she says: “MS rehab and research has advanced tremendously in terms of disease modifying therapies. There’s now an evolving awareness that people with MS can be healthier and more functional.

“In my mind, it’s very meaningful, because these are people that we haven’t previously been able to help live their healthiest lives.

“There’s also a lot of work going on with predictive analytics that I think is very exciting. A lot of people are focused on establishing large data sets and developing predictive analytics, trying to figure out exactly who’s going to benefit from which kind of care.

“Lots of important work is going on trying to advance precision rehab; asking how can we do a better job deciding what to do for a given person based on how they present with their MS, stroke or spinal cord injury, for example. What can we offer them?

“I think we’re starting to see that we need to break down the silos between the different diagnostic groups and to think about each individual based on how they present with impairments.”

Deborah herself is involved in a multi- site trial testing the evidence-based guidelines for exercise in MS.

“We’re evaluating delivery of these guidelines combining social, cognitive theory and behavioural intervention – comparing delivery in the home via tele-rehab and in a facility.

“It’s going to be the largest exercise trial of its kind and is very exciting because every day we’re hearing from people just how meaningful participating in this exercise intervention has been for them.”

The study’s findings are likely to be published in 2021. In the meantime, there is much work to be done at the ACRM, including in growing its global network.

“We’re really keen to expand our reach. We’re currently working on developing partnerships with similar minded organisations around the world. I think we could probably do a better job in terms of global collaboration.

“One of the limitations, whether it’s with Canada, the UK or other places in the world, is that the reimbursement structure and the way services are paid for here is a little different.

“But there is great collaborative work going on to address problems. In the MS world, for example, there are people in America, Ireland, the UK and Canada all working together. There’s definitely that type of collaboration happening in spinal cord too.”

Another focus area for the ACRM is in developing leadership skills in rehabilitation.

“We really want to develop future leaders in rehab research and rehab medicine. A lot of our most prominent and influential people are either in retirement or getting close to it.

“There is a strong need to develop not only our early career researchers but also our mid-career ones, helping them to develop into leaders in the field. We already have a special early career training course that really has had a huge impact already.

“So now we are doing the same scheme for mid and late career people – those ones who get to the stage of saying, ‘Ok I’ve established my research agenda and I’m doing fairly well. Now what can I contribute to the field and what else can I do to advance myself ?

“Policymakers come in and work with them, helping them to do a better job of packaging their research to get the funding they need. It’s just a unique course and very powerful.

“Researchers don’t get a lot of opportunities to develop their skills as leaders. There’s a lot of education out there but it’s not packaged for the researcher and a language of a researcher and the way that they think.

“So we have an opportunity to develop people as leaders, and not just managers. It’s not just about how you do the day-to-day operations, but how do you think in a visionary way? How can you package that research to influence the field and what mechanisms can you use to do that?

“That’s what we’re trying to do because we need those future leaders.”

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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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