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Vital rehab role under threat

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“Numbers are our biggest challenge as a profession,” says Diane Playford as she ponders the current state of the nation for rehab medicine physicians.

“Many medical specialties are small in the UK compared to our European colleagues, but rehab medicine is disproportionately small.”

November 2018 brought an end to Playford’s two- year tenure as president of the British Society of Rehabilitation Medicine (BSRM). She stepped down with the profession in which she has worked since 1995 at a crossroads.

In the UK there are currently around 180 consultants in rehab medicine, with a further 40 currently in trainee positions.

These professionals play a key role in shaping and improving rehab outcomes – yet their limited number means many patients and multidisciplinary rehab teams cannot benefit from their expertise or skills.

Various factors in the UK have resulted in the influence of the role shrinking in recent decades. Among them is the legacy of changes in the 70s and 80s that saw the two physical medicine fields, rheumatology and rehabilitation, veer off in separate directions. This shift left doctors in the latter camp focused largely on the most severe disabilities, and therefore a limited number of cases. This means patients with conditions that are managed with input from rehab medicine physicians in other countries do not receive such access to these professionals in the UK. This must change however, says Playford, or the standard of UK rehab compared to other nations could suffer over time.

“We need to articulate the role of the rehab physician more clearly. We also need to grow links with other specialties, many of whom use a rehabilitation approach but their core skills lie elsewhere.” She points to pain clinics as an example area where rehab physicians are being underutilised.

“The physicians or anaesthetists within a pain clinic will be technically very skilled at treating pain but may not be so good in the skills needed to help people function in everyday life. Rehab physicians have something to offer here, as do physiotherapists and psychologists. The more comprehensive the multidisciplinary team, the better the outcomes will be. It is relatively unusual to have a rehab physician in a pain clinic in this country but fairly common in other countries.”

Musculoskeletal rehab is another field in which Playford believes rehab physicians could and should play a greater role in patient care.

“We have very few rehab physicians working in musculoskeletal rehab. In other countries, musculoskeletal is a significant field for them; and this includes recovery from musculoskeletal trauma, management of lower back pain and vocational rehab for people with musculoskeletal conditions.

“I think there is a growing recognition that rehabilitation services for people with musculoskeletal conditions, particularly trauma, are very limited in the UK and need to be developed.

“Currently these services are largely delivered by physiotherapists, many of whom have practitioner or consultant practitioner roles and are very skilled. But when things get very complex, then the rehab physician has a contribution that at the moment is not being made.”

The historic move of rehab physicians towards only the most severe disabilities means many now work only with patients with combined physical and cognitive difficulties. As a result, members of the musculoskeletal population, whose difficulties are mostly physical, may miss out on their expertise.

This differs overseas, partly because of the impact of insurance-based systems in creating a stronger drive to get people back to work. “In other countries, rehab medicine has grown because of its very close links with vocational rehab. And that has also been very badly neglected here,” she says.

Another trend in the UK that is not widely replicated elsewhere is skilled therapists increasingly taking up the role of autonomous practitioner.

“This has many advantages, but there is also a disadvantage. The multidisciplinary team may face a complex problem that requires some of the skills of a physician, such as the prescription of medication, or consideration of medication in the context of other factors. Unless you have a prescriber on your therapy team – and there are some physiotherapy and nurse prescribers – you have to wait to get a referral to a rehab physician who has those skills.

“Alternatively, you can refer to a GP, but you can’t have that multidisciplinary conversation about the various factors contributing to spasticity and the best way that can be treated without a physician on the team.

“In not having physicians on the team, patients are missing out on prompt treatment. They are not getting the right treatment at the right time.

“I think teams that do have easy access to rehab medicine physicians really value their contribution. Many teams who’ve never had that experience would also value the opportunity of working with them.”

An example scenario could be a patient needing an expert physician to consider the impact of drugs which manage tone, but which also may have sedative, cognitive, mood and bladder function implications.

“It’s self-evident that having someone whose expertise lies in this area, amongst other things, will have a valuable contribution to make to the timely management of that patient.

“Multidisciplinary teams work well when they identify all the contributing factors to a patient’s presentation and to their function very accurately. That means they target their interventions in the right order and in the right way for that patient. That makes the team much more efficient.”

Against widespread inconsistencies, Playford believes the UK would benefit from a single, cohesive voice representing the multidisciplinary rehab team and its patients on a national level.

“It is right and proper that there are individual disciplines and professional concerns. If what patients need is access to a multidisciplinary rehab team, however, then there perhaps ought to be a voice that represents all the disciplines and all the patients.”

Stroke is an area where the collective voice of multiple professional groups has been able to influence change and improvements in care delivery, she says.

“Stroke has been strongly led by the stroke physicians, working with multidisciplinary teams. The big national meeting, the Stroke Forum, is a really successful clinical and academic gathering which is influential in the development of stroke services and
the dissemination of skills and knowledge around stroke.

“A really successful multidisciplinary environment has been created that drives the stroke agenda and this has been manifest in all sorts of things. You can see it in the nature of multidisciplinary data collection and the Royal College of Physicians’ multidisciplinary guidelines for example. We don’t have the same powerful voice for other conditions.”

Could such achievements in the stroke field be replicated more widely in rehabilitation? “You could, of course, find a voice for all traumatic brain injury, which is a very large and growing problem. You could have another for MS or Parkinson’s. But if you look at the skills required in multidisciplinary teams to treat those conditions, there is a lot of commonality.

“We perhaps need to separate generic skills that allow us to deliver treatment to large groups of patients from the very specialist skills that may need to be offered at a regional rather than district level. Some patients need a disease or symptom-specific team – but that’s a relatively small number of patients. “Ultimately, most patients want treatment close to home from a team that feels comfortable managing it. A louder and more collaborative representation of multidisciplinary rehabilitation teams
would perhaps help to ensure more patients receive this.”

Despite the many challenges facing UK rehab teams, there are plenty of reasons for optimism about future of rehab, says Playford. She is particularly enthused about advancements in neuroscience.

“This is a really exciting time for rehab generally. There is an enormous amount of interest within the neuroscience community in targeting treatments to individual patients. This will allow us to stratify patients in terms of their individual pathologies and genotypes and target the right treatment to the right patient. It also allows us to do the sort of clinical trials that need to be done that demonstrate positive results.

“At the moment, we tend to use treatments that we know will work in some patients, but we don’t know which those patients are. We therefore waste a lot of time and energy treating the wrong patients. The advances in neuroscience will allow us to match
the interventions to the patient and that’s really exciting.

“Soon we’ll be able to achieve really sophisticated imaging, enabling us to do real time analyses of, for example, EEG or polysomnography data. This will allow us to choose our drugs more carefully, based on the impact they are having on people’s cortical activity.

“They will also enable us to enhance neuro-plastic changes, allowing patients to make better recoveries.

“Then there is the technical stuff around robotics, exoskeletons and smart fabrics for lightweight orthotics. There is lots of really exciting stuff going on.”

In future Playford would welcome more research projects specifically focused on rehab. These are in short supply partly because there are so few rehab centres co- located with university hospitals, she says. Also, there are “very few” trained academic rehabilitation medicine physicians.

“There is some really good neuroscience looking at preventing disability, in the context of an acute neurological event. But there
is very little looking at how we improve treatments for people in the sub-acute and chronic phases.

“There is funding available for research into the early stages of rehab, in terms of preventing disability in the acute injury, but very little for later on. We need to meet this challenge and create more successful rehabilitation research platforms.”

Meanwhile, having stepped down from the BSRM helm in October, Playford believes the organisation remains in good health, but with a tough remit to deliver.

“The BSRM is a relatively small society which reflects the size of the rehab medicine community in the UK. I have to say I think it punches above its weight. It has produced a number of very useful guidelines and guidance and it is well represented within the clinical reference groups, the Department of Health, on national committees and at the Royal College of Physicians.

“The challenge for the society is to make sure that medical students and trainees are aware of rehab medicine as a specialty; and we are taking some steps to raise awareness of it as a fascinating career choice. Certainly it’s one I have never regretted.”

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Insight

The psychiatrist fighting for domestic violence victims

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Australia’s New South Wales government has promised to improve brain injury testing for domestic abuse victims after a psychiatrist drew attention to inconsistent care for vulnerable women. Psychiatrist Karen Williams urged the government to adopt a concussion protocol for family and domestic violence victims after doing her own research and being shocked at what she found.

It started when Williams noticed the disparity in how her patients were diagnosed and treated.Williams specialises in the treatment of post-traumatic stress disorders (PTSD), often with military, police, emergency personnel and other first responders.

But she also treats the general population, the vast majority of whom are women with histories of child and domestic abuse.

“I was getting two populations,” she tells NR Times. “The military patients, who are clearly identified as having PTSD, and the female population, who are mostly identified as having depression, anxiety and personality disorders, but had incredibly high rates of abuse in their histories.But Williams saw that whilst both groups had similar symptoms, and similar levels of trauma, they had very different treatment options.

“There’s a lot more funding put into supporting traumatised soldiers and first responders than there is for women who have experienced trauma within their home.

“In Australia, we don’t have much at all for women and children victims of abuse.”

This was a particular concern because of the amount of times Williams had heard about multiple head injuries and concussion among women who were victims of domestic abuse, which is similar to boxers and those player high contact sports.

“Women who’ve been unconscious several times or strangled have symptoms such as memory deficits, insomnia, migraine and mood swings, which all could be put down to PTSD and depression, but also brain injuries.”

But if Williams wanted to find out if a patient had a history of brain injuries, she would have to refer them for neuropsychiatric testing, which costs up to AUS$1000.

“This is completely unaffordable for many abuse victims so it just doesn’t happen, so we don’t investigate women who’ve had brain injuries.

“One brain injury unit told me they would consider taking on a patient if they could provide evidence that an assault happened – such as hospital records.

“This completely fails to take into account that the vast majority of domestic violence survivors will not report any assault to anyone and will not have so-called evidence.”

Then, Williams was speaking to a colleague whose son had had a head injury in a sporting field.

While they were together, a nurse rang to follow up the treatment he’d received in the emergency department.

“The nurse asked how her son’s personality and memory was, and gave a fantastic run-down of the symptoms that can happen after a concussion,” Williams says.

Williams was shocked – she’d never heard of someone ringing up women after a head injury in a domestic violence case.

She rang the local emergency department and asked about their protocol following a head injury obtained during sport.

She was given a detailed outline of the observations they take, their plan over the weeks following the patient’s injury and the advice they give the patient.

Williams called several emergency departments in other Australian states, and whilst all had a protocol for sports players following a concussion, none said they had a protocol for women who had been the victim of domestic abuse.

“There wasn’t one place that said they had a particular protocol.

“If they knew the woman had had a head injury they’d give them the basic head injury protocol, but nothing specific that took into account the very individual needs that a woman with a head injury in a domestic situation might have,” she says.

Williams says research indicates health care professionals correctly identify family violence victims about one per cent of the time.

“In sporting players’ protocol, there’s a recognition that says that your patient may not know what they’ve experienced in the past was a head injury, so the advice is to be really explicit. They’re given a list of questions to break it down with that player to make sure they understand what could be a head injury.

“There is opportunity for scanning, and neuropsychological testing if there is evidence of persistent symptoms.”

Williams says doctors should be going through the history of women, too, to see if they’ve lost consciousness in the past.

“There are a variety of mechanisms in which a woman experiences brain injuries in a domestic situation, many more than sporting probably, and the more head injuries a woman has, the greater her chance of long-term problems,” Williams says.

This includes a higher risk dementia, PTSD, migraines, learning problems and memory problems.

“But women aren’t told this, so many don’t know that they’re at risk of these things.”

Williams says there is a ’hidden epidemic’ of women in the community with brain injuries no one knows about, who could have been diagnosed with mental health issues instead.

In 2018, Brain Injury Australia released its findings after looking at the prevalence of brain injury in victims of domestic violence.

It found that 40 per cent of victims who attended hospitals in Victoria, Australia, for domestic violence had a brain injury and the majority were women.

But there’s no specific treatment for these women, Williams says, and many won’t even know they have a brain injury.

“Abused women are a very neglected population, and when you think about the money being spent on sports, and sports players, there’s no reason we can’t look after woman as well,” Williams says.

But despite these findings, Williams says it didn’t lead to any change.

“When I found all this out, I was angry and upset,” Williams says.

She arranged to meet New South Wales’s Labour MP Anna Watson in August, and when Williams told her what she’d found, she says Watson was ‘mortified’.

“She immediately got on the phone with the office of the minister for the prevention of domestic violence, and requested a meeting as soon as possible.

In the Zoom meeting a month later, Williams went over what she had found with Mark Speakman, Attorney General and Minister for the Prevention of Domestic Violence, and outlined the obstacles facing women.

But he made no promises, and Williams said she felt he didn’t understand the urgency or gravity of the situation.

Watson then went to the media, and the story was reported on. Within a week, the government produced a statement promising to investigate the issue.

“We’ll all be watching and holding them accountable,” Williams says.

“I will be trying to follow up, I won’t let it go.”

Williams is disheartened that it took media coverage to get the government to respond, but says she’s learnt a valuable lesson.

“Part of the reason I’ve spoken to the media and been vocal about it, is my experience is that when we do things quietly and ask for things politely, the government says there’s no money, despite being one of the wealthiest countries in the world. But when the voting population starts getting angry and asking what’s going on, that’s when we see an answer.

“It’s been a sad realisation for me to recognise that people don’t respond to do the right thing, they respond to winning the vote, so I will keep being as loud as possible in the media.”

Leaving brain injuries undiagnosed has significant consequences, Williams says.

“You’ve got women feeling like they’re a bit crazy, women wondering, ‘Why don’t I remember things, why have I got headaches all the time, why can’t I sleep?’

“It makes women feel worse, like something is wrong with them rather than identifying the underlying cause that we’re completely missing.

“If women are unable to work due to the physical and psychological side effects of a recurrent head injury, they need to be able to apply for NDIS funding (National Disability Insurance Agency). f they don’t know they have a brain injury they will be left to flounder – which is what is happening now.

“The vast majority of doctors don’t know about this. The medical system failing these women.”

There will be a lot to work out as support becomes available, Williams says, as some women could fear that having brain injury diagnosis could interfere with them getting custody of their children.

But, ultimately, change will benefit these women.

“All women deserve to know the truth about what’s happening to them,” she says.

“In some cases, their brain injury will be the final straw. They might think an act of violence isn’t a big deal, but if a doctor says, ‘Look how many times this has happened to you, you could end up long term brain damage’, that might be the final push that makes her take steps to leave. There’s no excuses to justify why these conversations aren’t had.”

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Interview: Inside one of the world’s biggest concussion studies

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Concussion is a huge concern across the US military and in sports. In 2018, 19,000 military personnel were diagnosed with a traumatic brain injury, while college athletes had an average of 10,500 concussions for past five years.

Despite the numbers, many say there’s a lack of research to inform ways that government and industry can best tackle this problem.

In response, the largest prospective concussion study was formed to fill the gaps in understanding, to see what recovery from a concussion looks like in athletes and cadets.

More than 44,000 people have since enrolled in the CARE (concussion assessment, research and education) consortium since its inception in 2014, across 30 universities and four military service academies across the US.

It has so far captured data on more than 4,300 concussions. The study is funded by the National Collegiate Athletic Association (NCAA) and the Department of Defence.

It’s believed that NCAA athletes represent the best model for what happens with concussion in the military.

Researchers involved in the study hope their findings will allow them to predict what happens to people after a concussion; information which can then help inform protocols that could become the standard for universities and the military.

Steve Broglio, associate professor at the University of Michigan’s School of Kinesiology and departments of neurology and physical medicine and rehabilitation, and one of the project’s leaders, says the initial aim was to be able to define the acute history of concussion, and see what happens to people after they have a concussion, establishing both a clinical arm and a research arm.

“In the first days of the project, we enrolled 35,000 civilian athletes and military service cadets to try to understand what was going on,” he says.

“We captured this by understanding their clinical natural history,” such as if they went to the doctor about their symptoms.

“The second arm of the project was to understand what’s going on a biological level, using genetics and biomarkers and advanced imaging, to see if recovery on a biological level reflects the medical level,” Broglio says.

In 2018, the team moved on to the second phase of the project, which was to understand the persistent and long-term effects of concussion.

“We continued to enrol people and we now have 55,000 participants. Each one receives a baseline exam when they enter institutions,” Broglio says.

“The second phase is now starting to get exit data as gradates do another evaluation to see if their concussion has had any effect on their brain functioning.

“In parallel, we’re also reaching out to people who graduated from intuitions, so they can do online evaluations to see if the long-term reflects just after they graduated, and within the first five years of gradation. The goal now is to start tracking people for their whole life to see the trajectory, and to see what percentage of people have issues,” he says.

Thanks to its findings so far, the consortium has participated in setting the concussion policy for the NCA, which outlines how concussions are managed, Broglio says.

So far, CARE has published around 60 papers relating to various findings, and Broglio says some of the consortium’s findings have had more impact than others.

In general, he says, findings that chime with a wider body of research that came to the same conclusions are more likely to help enact changes in policy because they will carry more weight.

“Some of what we’ve found doesn’t match what other people have found, some things have been consistent with other studies. When it matches, we can say, ‘Right, we need to change something’,” he says. This research is unlike any other, he says, partly because of how far-reaching it is.

“We were interested in getting a broad understanding of what’s going on across all cohorts. The very first goal is to understand the natural history of concussions, and the recovery rate of athletes and cadets participating in multiple levels and across different sports and different sexes.

“Prior to the project, most of the literature focused on male contact collision sport athletes, such as American football, maybe ice hockey and lacrosse. We have close to 50 per cent women in the study, across every NCA sport.”

These sports include basketball, baseball, ice hockey, water polo and cross country. The areas with the most reported concussions, according to the NCAA, are women’s soccer, football, ice hockey and wrestling.CARE’s most recent research, which is yet unpublished, shows that there are different recovery rates based on the sport.

“No one has ever shown this,” Broglio says.“There’s almost an identical recovery rate between men and women that hasn’t been found before, and which we didn’t anticipate. It’s largely been recorded that women take longer to recover, but when matched with equivalent sports, men and women’s recovery rates are virtually identical, which is a pretty significant finding.

“We’ve also had a series of papers looking at the cognitive performance of contact athletes relative to non-contact. They perform the same, if not better. This, he says, runs counter to the school of thought that repeated blows to the head causes chronic traumatic encephalopathy, a neurodegenerative disease which causes severe and irreparable brain damage.”

Some of those things are different to what’s been previously reported, which also opens the door for more research and conversation,” he says.

As well as research, the project is also focused on education for athletes, trainers, coaches and families.

Funding for CARE expires in one yea, and the consortium is in the process of submitting for the next five-year cycle.

“We could be around for as short as 12 months, or it could be another five years. Ideally, it would be another 50 years, so we can track participants,” he says.

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Interviews

“You can’t wallow – you’ve got to get on with it”

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Having experienced a brain haemorrhage five years ago, 52-year-old Jane Hallard from Gloucester has had to rebuild her life. Here, she details her struggle and how she has learned to look to the future with positivity.

In the five years since my brain injury, I’ve had to come to know a whole new me.

While I look the same as I did, I’m far from being the same person.

On that day, back in 2015, when I was helping my son to clean his car, little could I have imagined what lay ahead.

There was nothing unusual about that day, I felt fine, nothing was amiss at all.

Then, without warning, I can only describe the pain as if my head was being hit by a sledge hammer. I had experienced, I later learned, a subarachnoid haemorrhage.

I was rushed to hospital, where I underwent life-saving surgery and then spent the next eight weeks recovering from the ordeal which came out of nowhere, but was to change my life more than I could ever have predicted.

Jane Hallard

The main issues I experienced, and continue to have to overcome on a daily basis, are the impact on my mental health and the brain fatigue.

Both completely unseen by others, they are hugely difficult for me and impact on my life in so many ways.

They are very hard to explain to people – I couldn’t understand what was happening to myself at first, so couldn’t really expect family and friends to.

My children, then aged 22, 21 and 15, were fantastic, and my mum was hugely supportive too – although my husband, who I had only married six weeks before my haemorrhage, decided he couldn’t cope and left.

The emotional impact of that was another big barrier to overcome.

My mental health is up and down and finding ways to manage that has been hard, particularly over the past few weeks during the COVID-19 pandemic.

That did set me back greatly, but I feel like I have picked myself up again now.

Emotions are very difficult to deal with, and I often react to things very differently to how I used to. Furthermore, the brain fatigue has a huge effect.

Often I describe this to people, and they’ll say ‘I get really tired too’, which I appreciate is them trying to understand, but they really don’t.

Whereas a person without a brain injury will go to bed and sleep, during which time their brain recovers, for me, my brain will only recover to perhaps 70 per cent of what it used to.

I often feel I’m starting a day six steps behind everyone else. I generally go to bed at 8pm, as I only have a certain amount of energy to use to get through the day, and while that gives me the best chance of feeling able to face the following day, having such an early bedtime means I have no social life.

I returned to work around eight months after my brain injury, and because I looked fine, people presumed I was back to ‘normal’, little realising I was far from the person they used to work with.

People just don’t understand. I used to print off leaflets about brain injury and its impact and leave them around the office, hoping colleagues would read them and learn a bit more about what I was living with on a daily basis, but people just don’t find time for things like that in their busy lives.

One of the most distressing parts about my whole ordeal was finding out upon discharge from hospital how little support and guidance there is out there.

When I was discharged, I was given a follow-up appointment a few weeks down the line, a couple of leaflets, and that was it.

I was left with a life-changing injury and just released back into my old life and expected to get on with it.

I had no idea what to do or where to go. My children looked online to find information, online forums and local groups for me to attend, so I could find somewhere where people genuinely understood.

My Headway branch in Gloucester was a lifeline for me. In fact, if it wasn’t for them, I don’t know where I’d be. I don’t know whether I’d be here at all.

I still upsets me thinking of people who are in the position now that I was five years ago, not being directed towards Headway or any other kind of support.

I’ve been there and now how that feels, and I strongly believe that needs to change.

Now, generally, I feel in a much better place. I’m all set to start a new job, which is a new challenge for me doing something totally different, and I can’t wait to get started.

I’ve found that you can’t wait for things to get better, and it might not get easier, but you can find ways to deal with it. I do a lot of volunteering work at a local food bank, and that puts things into perspective for me.

You can choose the way you go in life – you can sit around wallowing, or you can get on and make the best of it. That’s the attitude I have learnt to adopt and the one I’m going to live my life by from now on.

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