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Failed and forgotten in a US care home

One of America’s leading experts on disorders of consciousness sees major flaws in the way patients are being managed – in a system marred by pessimism and premature death. NR Times reports.

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Hopelessness can’t be predicted within the first three days a brain injury, says Dr John Whyte. Yet, as he has learned in decades of working with disorders of consciousness (DOC), many doctors assume otherwise.

Faced with an unconscious head trauma survivor and their devastated loved ones, all too often decisions are taken to unplug the machine; halting potential recovery journeys before they’ve begun.

“Research has shown that a large proportion of the deaths after a severe brain injury are within the first 72 hours of the injury,” says Whyte.

“The family and caregivers make the conscious decision to withdraw care and let the person die, presumably based on the shared perception of the acute care doctor that the situation is hopeless.

Needlessly pessimistic?

“The problem is, we have good data which shows that patients who look hopeless in the first three days can go on to be independent.”

Whyte (pictured) is founding director of the Moss Rehabilitation Research Institute in Philadelphia and the soon-to-be recipient of the Gold Key Lifetime Achievement Award from the American Congress of Rehabilitation Medicine.

He has been working with, and extensively researching, DOC for over 35 years, and has seen much progress around diagnosis and treatment in that time.

But looking at America’s general approach to DOC patients today, he sees a hugely concerning picture.

The US is, of course, affected by the big DOC challenges faced universally – such as misdiagnosis which, according to a systematic review published in the British Medical Journal in 2016 (Kondziella et al), could occur in as many as four in 10 vegetative state cases.

Pessimism and a sense of treatment futility in acute care that sees lives ended arguably prematurely is also a global issue.

A major concern specific to his native US, however, is the care pathway currently taken by most DOC patients.

Health policy, funding changes and a general lack of research have conspired to create a system which Whyte believes is failing DOC patients who may have a genuine shot at recovery.

It’s a system in which the majority of DOC patients are discharged from acute hospitals to non-specialised nursing homes within weeks of their injury.

This, says Whyte, is denying thousands of people with the potential to regain lost functions and independence, access to the intensive rehab they need.

Unsuitable surroundings 

“A nursing home in the US is not just a place that isn’t providing intensive rehabilitation, it’s a place that isn’t providing intensive medical management either.

“You don’t have to have a physician rounding on patients every day or specialty consultations. You can transfer a patient who gets sick to an acute care hospital when that happens, so you don’t have to have backup in your institutions.

“It’s not a place where you should send a medically-fragile, complicated patient who needs intensive medical oversight.”

Today’s situation has been decades in the making.

When Whyte’s career began in 1984, care was built around a fee-for-service health insurance system. This meant providers charged daily for the services they delivered.

“A number of for-profit healthcare companies I believe saw DOC patients as good business. They were impaired for a long period of time, and some of them indefinitely.

“You could continue to dream up treatment goals and give them physical therapy day after day and charge for it.

“I saw patients who were recently injured and progressing quite nicely, and those who had been injured years ago, and weren’t changing at all.

“Clinicians were writing active treatment goals for all of them as though they were all the same – and the insurance companies were getting billed as though they were the same too.

“At some point, the payers said ‘we’re paying a lot of money and it’s not really clear that this is cost effective’. At that time there wasn’t data to say what we were doing was or wasn’t cost effective.

“They basically decided that it wasn’t cost effective to pay for this for anyone.”

And so began what Whyte calls an “historical pendulum swing” towards the current situation.

Increased pressure for results 

By the end of the 1980s, healthcare was increasingly being charged for in more capitated ways.

In acute care, a set total amount, rather than daily fees, might have been billed for looking after a heart attack patient, for example.

This intensified the pressure to deal with patients as efficiently as possible and to justify the cost of treatments and therapies.

“In this transition, payers came to the conclusion that paying for rehabilitation for unconscious or minimally conscious patients was not cost effective.”

Misconceptions about DOC-related rehabilitation also contributed to its demise.

Whyte says: “The payers also incorporated the logic that rehabilitation as an active service requires that patients consciously participate in it.

“Patients learn how to walk, operate a wheelchair and use a memory notebook to keep track of their appointments et cetera – this is the familiar model of rehabilitation, which assumes that the patient needs to be an active participant in the process.

“But that’s one model and that’s assuming that if they can’t be an active participant, then the whole process is worthless, which we are increasingly having data to say that’s not the case.”

Many healthcare payers insist on only funding admission to acute inpatient rehabilitation programmes if the patient is at least minimally conscious and undergoing identifiable functional improvement.

As Whyte notes, this is particularly challenging since a number of studies show that misdiagnosis of a patient’s level of consciousness is “very frequent in the hands of non-specialists”.

A paper produced by Whyte and Risa Nakase-Richardson in 2013 analysed existing research findings on outcomes, comorbidities and care needs relating to DOC.

It found evidence in several articles of a high burden of medical comorbidity and high rates of rehospitalisation in DOC cases.

It also found that the rate of these complications can be reduced with active medical management and, possibly, brain injury expertise; both of which are lacking in most nursing home environments.

Perhaps the headline finding was that: “Collectively these studies suggest that a large proportion of patients with DOC who are admitted to inpatient rehabilitation regain consciousness and even orientation; and that their further recovery can go on for more than two years and that structured programmes that care for patients with the worst prognosis may result in surprisingly positive outcomes.”

Reasons for optimism 

Not all DOC patients are moved into nursing homes in the US, and Whyte is among the relatively small band of experts working with DOC clients in specialist rehab facilities. This work has enabled some useful research.

“In one of our own studies, we asked ‘what’s the trajectory to becoming more medically stable and is it closely related to how long ago the patient was injured, or how long ago they arrived at the rehab hospital?’

“The answer is that there is no relationship with how long ago the person was injured and a strong link to how long ago they got to a rehab hospital.

“This gives us some evidence that it’s not just if you wait, they’ll get better, but if you know what you’re doing, identify the problems, treat them and manage them, then they get better. But none of this is going to happen in a nursing home.”

Part of the reason that health insurance companies are so pessimistic about DOC patients, says Whyte, is not just that they think they’re wasting money, but that they’re wasting it on people who can’t get better, no matter how much money is spent on them.

“But this is simply not true in a lot of cases. We’ve shown that even when you admit a patient to acute rehab in an unconscious state, they are likely to regain consciousness while they’re in rehab.

“Some of them are likely to even resolve their confusion and start becoming much more actively engaged while they’re in rehab.

“By five years, of the patients who were admitted to rehab while unconscious, about 20 per cent are living independently or rated
as employable.

“So it’s a minority but not a trivial minority. And a lot of the other patients are getting better in terms of daily living and mobility, though they’re not to the point where they could be independent or employed.”

The odds of recovery for DOC patients taken on the well-worn path from hospital to nursing home may be much slimmer than those who receive intensive rehab.

In fact, such statistics are not known, partly because the current situation has thwarted research, as Whyte explains.

“That patients with DOC have been substantially triaged to nursing homes has had the unintended consequence of making it next to impossible to do research because most nursing homes in the US have no research infrastructure.

“It’s also the case that most nursing homes aren’t specialised for patients with DOC. They can’t afford to be because they’re expensive patients to take care of, so no home has a whole bunch of them [together].

“This means if I wanted to do research in nursing homes, I’d need almost as many nursing homes as I had patients in my study, because there’s going to be one patient in this nursing home and two patients in that one.

“It’s essentially infeasible to learn about disorders of consciousness from patients who are in nursing homes.”

An ideal solution to America’s DOC challenge would be a randomised controlled trial in which intensive rehab and nursing home approaches are compared, to prove to payers which is best.

“The payers would like to see a trial in which you take a whole bunch of patients with recent serious brain injuries and send half to an intensive rehab programme, and the other half to nursing homes like we’re doing in the US now.

“You could then measure both the cost and the long-term outcome of those two systems.

“Everyone agrees that that would be the most rigorous way of answering this question, but pretty much everyone also agrees that it is never going to happen.

“For insurers to ask for that is sometimes a disingenuous request as they know it’s never going to happen and therefore they will never change their policy.”

Logistical problems and the sheer cost of such a study make it unlikely and focus has instead been on “triangulation from other sources of evidence”.

This has culminated in the issuing of an evidence-based clinical guideline last year.

“We pulled a vast amount of literature together on diagnosing DOC, predicting prognosis in DOC, and treatment of patients with DOC.

“For the first time, there was sufficient data to make strong statements about many important things that have policy implications.”

Whyte was involved as an author, while it was jointly produced by the American Academy of Neurology, the American Congress of Rehabilitation Medicine and the National Institute on Disability, Independent Living, and Rehabilitation Research’s (NIDILRR’s) Traumatic Brain Injury Model System.

Sweeping changes needed

It concluded that the combined weight of research mandates changes in clinical care and healthcare policy for the DOC patient population.

Among other things, the guideline supports access to specialised multidisciplinary rehabilitation for patients with DOC and notes that the pessimism that drives early withdrawal of care is not warranted by the longitudinal data.

“One of the points in the new guideline is that prognosis can’t be accurately predicted early, and therefore, big decisions should not be based on the notion that it can.

“Another is that there is sufficient evidence now that these patients can benefit from, and need, high intensity complex rehabilitation services.

“This review itself didn’t find randomised controlled trials of the kind that we would ideally want, but essentially, used the same logical argument, that we have a high burden of complex disease and a high potential to get better.

“We know that in other situations which are complex and need intensity, it helps to concentrate people in a facility where expertise can be developed, and so on. So putting all the evidence together, these highly respected and influential bodies basically said that these people are candidates for intensive rehabilitation and should have access to it.”

The guideline also supports the use of Amantadine, a medication commonly associated with Parkinson’s treatment, in traumatic DOC. This was the direct result of a study Whyte was involved in.

“We published the first randomised control trial that actually showed that a drug made a difference in the rate of recovery. Before that, everybody was giving drugs off label and crossing their fingers, but nobody had good data.

“I hate to even say it out loud, but it took us 14 years to publish the trial because we had to build the research network and get funding to do the trial.

“Then it took us six years to enrol 184 patients, so that was tremendously inefficient, because we were cobbling together small programmes that only exist rarely.

“If policy change happened so that large rehab institutions were treating these patients routinely, the pace of research would dramatically accelerate.”

The Amantadine findings have been adopted into practice with “almost every patient with a traumatic disorder of consciousness being given the drug soon after injury”.

Other parts of the guideline which require more significant behavioural changes have not yet been heeded, however.

“Published evidence doesn’t instantly lead to healthcare behavioural change. It takes active work to get people to change their practices and there’s an overarching issue of how do we get translation to happen at a faster rate.

“But there are additional obstacles here in the US. We are terribly concerned about the overall cost of healthcare period. Anything that involves spending more rather than less is going to be met with initial resistance.

“It would be great if we had really good data on cost effectiveness. If we had evidence that spending money now will save money in the long run, that would facilitate the political policy conversation.”

Whyte believes access to intense rehabilitation would indeed save in the long run, especially in reducing acute care hospital visits.

“Some patients could be going home instead of being cared for in institutions so that would save money.

“Also, you have patients bouncing back and forth between nursing homes and acute care hospitals for years, getting acute things treated that don’t ultimately move them ahead in any way.”

But in the US, the economic argument is clouded since “the pot of money that pays to take care of you long term is not the same pot of money that pays for your health insurance in the short term”.

Whyte says: “Many people are getting their health insurance from a private company – an employer-based company.

“Once a year, they can move to a different insurance plan but if they lose their job, which they will when they have a disorder of consciousness, eventually they will move off any of those private plans onto a government one.

“So the bottom line is that the company paying for their early healthcare won’t be paying for their long-term costs. Why would the insurer care about the two, three or five-year cost of recovery?”

There are also institutional barriers to improving DOC care in the US in line with the recent guideline, he believes.

For example: “If I’m working in an intensive care unit, we are being paid a capitated rate for every patient with severe brain injury, and therefore we need to discharge that patient as quickly and efficiently as we can.

“There are a million nursing homes that I can choose to discharge that patient to but there might only be one or two rehab facilities.

“They may or may not have a bed the day that I’m ready to discharge the patient, while my hospital administrator is breathing down my neck to get this patient out of here. So there are implications for rehab capacity.”

Also, the majority of rehab facilities with brain injury programmes are not currently set up to accept DOC patients.

“They don’t have expertise in that very challenging population.

“If and when the policy changes, there will need to be a big gearing up to enhance the skills of rehab providers to care for this patient population, because most don’t know how.

“So it’s a very complicated problem that will require changes in payment, institutional capacity and provider confidence.

“But at least now, for the first time, somebody other than providers who are totally invested in this patient population are saying the data justifies [change].”

Hope for the future 

Despite the considerable challenge ahead in opening up access to intensive rehab for people with DOC, Whyte is upbeat about the outlook for DOC patients generally.

“I’ve seen tremendous progress in my lifetime, so that gives me optimism that there will still be more. When I started, there was no relevant data about any of this.

“Nobody knew how much patients recovered, nobody could list their medical needs, nobody could tell you what their long-term prognosis was and nobody could list a treatment that had evidence that it would work.

“All of that is different now; it’s not perfect, but we have meaningful answers to all of those questions.

“There’s a lot of research going on around improving the detection of consciousness, because we know that we miss people who are conscious that we think are unconscious.

“There’s been a lot of work on both behavioural rating scales but more recently work using functional MRI, or EEG-based techniques, to actually show that patients who have no behaviour at all that looks conscious, can sometimes be found to have thinking that is.

“That’s an intriguing finding that we don’t know what to do with yet.

“What are you going to do with those patients? What’s the rehabilitation strategy when the person has no movement that can connect to communication devices or anything like that? We’re a long way from being able to communicate with brainwaves.”

Click here to find out about Dr John Whyte’s mission to revolutionise how rehabilitation treatments are defined.

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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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