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Brain injury lobby finds its voice

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 “It’s the economy, stupid,” read a note permanently displayed on Bill Clinton’s desk as he plotted his 1992 rise to power.

The sentiment was written by campaign manager James Carville to sum up the vote-winning force of money.

It remains an enduring electoral truth that continues to drive political decisions today. If, as in the US, economic matters are the motivator for UK politicians, the launch of the All-Party Parliamentary Group (APPG) for Acquired Brain Injury may have piqued their interest.

Delegates at Westminster, including a smattering of MPs and peers, were told that acquired brain injuries cost the UK around £15bn every year.

That’s the equivalent of 0.75 per cent of Britain’s GDP – or the same cost as Europe’s biggest infrastructure project, the vast Crossrail network currently being built in London and the South East.

Put another way, it could pay to host the London 2012 Olympics almost twice over, or to build 14 Wembley Stadiums at 
today’s prices.

Reminding MPs and healthcare policymakers of the financial implications of brain injuries may be an important part of the work of the APPG going forward; especially with every other faction of healthcare fighting to be heard amid sweeping changes to the NHS.

Chris Bryant, Labour MP for Rhondda and chair of the APPG (pictured below), tells NR Times: “The point of the APPG is that there is no party politics in it. It’s about trying to find solutions and also raising awareness, which is especially key for us at the moment.

“Lots of people don’t understand how much can be achieved with good rehabilitation services. Also, rehab units are often nowhere near trauma units and 
the pathways from the injury to the support are not very clear, with lots of people falling between the cracks.

“There is a very strong argument for rehab for acquired brain injuries.

It is massively cost-effective, actually saving money for the NHS and wider public purse; but lots of people are simply unaware of how much difference it can make.

“It can get someone all the way back to full cognitive normality and able to go back into work, rather than relying on the benefits system, for example.”

Bryant is joined in the APPG by Conservative MP John Hayes, Baroness Tanni Grey-Thompson, brain injury charities, 
networks and associations, private sector representatives and brain injury survivors.

Its launch will be followed by four roundtable meetings to discuss vital issues. They include ABI causes, trauma and neuro-rehab service provision, crime and offending behaviour, education and concussion in sport.

“Each discussion will be followed up with 
a report featuring key recommendations.
 A lot of us feel that these issues have slipped down the list of priorities in recent years,” Bryant says.

Given that the last brain injury APPG disappeared without trace 14 years ago, will this new entity really make a tangible difference to current policy and problems?

Recent years have seen no notable increase in the NHS’s stock of approximately 1,000 neuro-rehab beds – or in the estimated £220m of annual NHS spending on neuro-rehab.

Brain injury professionals may, therefore, be understandably sceptical about the prospect of getting brain injuries higher up the government’s agenda. Bryant insists the new APPG is a significant step forward.

“Everyone involved is wholly committed 
to driving change,” he says. “There are also members of the House of Lords who are very interested, some of whom have their own personal reasons, whether that is the loss
 of a family member or friends who have been affected.”

Bryant’s own interest in ABI stems from previous involvement in lobbying rugby authorities to get to grips with the threat
of concussion.

Despite recent announcements about increased focus by football authorities on concussion, he says: “The understanding of concussion in sport is still pretty limited and there’s a lot more work to be done there.

“There is probably a massive hidden cost
 of concussion that has led to depression
 and anxiety among people who might not have realised it had anything to do with the concussion they had years earlier.”

With concussion and many other ABI issues to face up to – like disproportionate levels of brain injury among prison and homeless populations – the APPG faces a mammoth task in the months ahead.

Small progress has been achieved already, however. 
Bryant raised the issue of brain injuries in Parliament before the APPG launch and
 has secured a meeting with the disabilities minister this quarter.

“The government was very keen to meet quickly so there is definitely a commitment to engage, whether or not that will lead us anywhere. I would argue that the NHS is under-resourced in general but I don’t know whether they will address that.”

Time will tell. Should any breakthroughs 
be achieved or reports published by the APPG, you can find out about them online here.

 Notes from Westminster

Delegates were given an overview of the issues affecting neuro-rehab at the launch of the new brain injury APPG in Westminster.

Professor Diane Playford, president of the British Society of Rehabilitation Medicine, delivered an overview of ABI and the multiple and varied effects it has on each individual.


Brain injury is the leading cause of death and disability worldwide and, in the UK, almost 1.5 million people attend A&E with head injuries each year.

Of these, around 200,000 are admitted to hospital. Many thousands more suffer from strokes or brain injuries caused by infection and disease, delegates were told.

Playford explained how specialist rehabilitation services are a critical component of the acute care pathway. Rehabilitation reduces the burden on acute and frontline services if patients are immediately accepted after their medical and surgical needs are met, she said.

A substantial body of evidence shows that specialised rehabilitation is effective, and is offset by savings in the cost of community care, making this a highly cost-efficient intervention.

But current rehabilitation needs are not being met, she said, with the Major Trauma Plan (2010) not taking rehabilitation into consideration.

Bed provision is insufficient and services are neither streamlined nor easily accessible. Furthermore, the rehabilitation prescription is largely not implemented and does not follow each patient along the care pathway as it should.

Awareness is very low in primary care so people with acquired brain injury who are discharged into the community receive very little support, she said.

Playford highlighted the role of education 
in raising awareness of ABI.

It warrants a category of its own due to the size of the problem, and should not simply be under the umbrella of “long-term conditions,”
 she warned.

Increased awareness of the magnitude of the problem should encourage extra funding for rehabilitation in this area, delegates heard.


Meanwhile, colonel John Etherington (pictured at a previous event above) gave a detailed explanation of how rehabilitation can be a net contributor to the NHS and society.

The director of defence rehabilitation, consultant in rheumatology and rehabilitation medicine at the Defence Medical Rehabilitation Centre, Headley Court, said: “In the short-term, rehabilitation is costly, but it is far less expensive than poor clinical outcomes. Ongoing costs fall on the health services, individuals and carers, and society as a whole.

“The continuous requirement on health services due to a lack of proper treatment places an avoidable and continuous cost burden.

“Disability due to poor care might prevent an individual returning to work, and more individuals requiring disability benefits places a greater cost burden on the taxpayer. The total cost of traumatic brain injury has been estimated at £15bn, and figures are set to increase if changes are not made.”

He continued: “The dramatic long-
term benefits of improved, immediate rehabilitation need to be emphasised in order to change the current narrative that ‘rehabilitation doesn’t work,’ or that ‘it is nice, but we cannot afford it’.

“Studies on war veterans who receive intensive, good quality rehabilitation following traumatic brain injury showed that the majority were able to live independently [87 per cent] and return to work [92 per cent]. This could also be true for society at large.

“Delayed transfer of care is currently a big concern, and ‘referral to treatment’ times are on the rise. Furthermore, five per cent of cases treated in Major Trauma Centres subsequently receive specialist rehabilitation.

“This means that patients with brain injuries are not receiving rehabilitation as quickly as they should, and the aforementioned negative consequences are only becoming a bigger economic problem.”

Etherington also reinforced the lack of rehabilitation beds available in the UK. There are 994 specialist rehabilitation beds in England.

Initiatives such as the Injury Cost Recovery Scheme, where insurers provide compensation for rehabilitation, are largely underused.
 Awareness needs to be raised of these alternative funding streams, he said.

“Ultimately, a new dialogue must begin incorporating a cross-governmental / society initiative and joint funding.

“The NHS needs to embrace broader societal outcomes; work, wellness, injury and illness prevention. Improving outcomes will generate national financial savings.

“Better resourced and planned rehabilitation will result in reduced welfare costs, reduced demand on the criminal justice and education systems, improved life expectancy, work and recovery.”

Also speaking at the APPG meeting was Professor David Menon who focused on 
the extensive global TBI report recently published in The Lancet.

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Interviews

Inspiring a brighter future for residents

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A neuro-rehab provider which opened its first facility in Worcester shortly before the first lockdown has succeeded against the odds – and now has plans to expand in 2021, as NR Times reports.

Inspire Neurocare provides support for people with a variety of neurological conditions, offering rehabilitation, respite and palliative care.

The firm opened its first specialist care centre in Worcester in February 2020, and this will be followed by further facilities in Basingstoke and Southampton in 2021/22. Inspire prides itself on a novel model of care that has “no limitations on the possibility of recovery,” all led by director of clinical excellence Michelle Kudhail.

A key element of the centre’s approach is the team’s commitment to understanding that every patient, and the circumstances that led them there, is different.

Whether this means enabling people to leave high dependency hospital units and develop their independence in a modern, home-from-home environment, or providing long-term support or end-of-life care, the service is designed to work around the needs of each patient.

Michelle’s background means she is the ideal person to head up the Inspire team, having worked as a neuro physiotherapist in the NHS until 2010, before moving into the private sector.

Michelle Kudhail, director of clinical excellence at Inspire Neurocare.

She takes an holistic approach to patient care, which has led to the creation of a team of life skills
facilitators and therapists at the provider, who develop their care around the needs of everyone.

“The life skills facilitators support and assist the residents to do as much as they can for themselves,” she explains.

“As the name suggests, their role is more than a carer; it is to facilitate the residents in all aspects of their care, whether that’s helping them get their breakfast, choosing what they are going to wear, or taking their medication.

“Their skills are broad because we want them to be involved in all aspects of the residents’ care; and because we want to provide what they need at the time that they need it.

“Roles such as this also enable us to evaluate the outcome of any action. If a resident has been given pain medication, a facilitator can assess whether it’s been effective, rather than a nurse giving the medication and then not seeing them until the next round.

“We also know from a therapy perspective that some patients don’t respond well to having therapy at a fixed time on a particular day; they simply might not feel like doing it. Our facilitators mean we can best provide interventions for the resident when they want them.”

Alongside this role, the facility also employs a wellbeing and lifestyle coach, focussing on the health and emotional needs of both residents and their relatives, particularly during a time when COVID has caused a lot of uncertainty.

Michelle says: “We wanted somebody that had relevant experience in working with residents, particularly with neurological conditions but also with a well-rounded experience so that they would not just focus on one aspect.

“The idea is to have somebody who can offer support in all areas, whether it be psychological, emotional or physical.”

Staff are overseen by experienced rehabilitation consultant Dr Damon Hoad, who shares his clinical oversight with the interdisciplinary team and supports patients on their journeys.

The rest of the clinical team have a wealth of experience within neuro services in and around the region.

The design of the Worcester facility draws on Michelle’s years of experience, and she had the opportunity to use her skills to help develop the purpose-built home.

She says: “We’ve had a lot of involvement all the way through from knocking down the pub that was there, to seeing it grow. Having the opportunity to be involved from the ground up was fantastic.

“Within the build itself we try to consider the needs of younger people, and so the inside of the home is very much a contemporary design and a lot of research has gone into its development to ensure it has the correct, up to date, equipment.”

Adding to the sense of autonomy staff are keen to foster, is the independent living flat, which staff are able to support via environmental controls.

With soundproofed rooms, residents can enjoy listening to music or watching films without disturbing others.

In common with all care facilities, the impact of COVID means that a lot of thought has had to go into the long-term plans for the property. The recently-built visitation suite – known as the ‘family and friends lounge’ – allows visitors to meet their loved ones in a safe and COVID-compliant way.

The suite includes separate access for visitors from outside, and features a large transparent Perspex screen separating each side of the suite, while an intercom enables contact-free communication.

As well as creating an infection barrier, the screen also assists when it comes to residents who may struggle to understand that they are unable to hug their relatives, while still allowing them to communicate and see each other up close.

After each visit, the room is cleaned and decontaminated in preparation for the next visit.

As Michelle explains, human contact is essential for emotional wellbeing, adding: “We’ve tried to create an environment that is as safe as possible, because we know how important visits are to the residents but, more particularly, to their relatives.

“Supporting the residents through this time is vital. We have residents that are used to going out and doing things in the community and we have had to adjust by being creative in the ways in which they can still access things that they enjoy and still communicate with their families.”

And while the pandemic has certainly delivered some challenges, Michelle and the Inspire team have been able to look at some positive outcomes.

She explains: “One of the positives for us is that it gave the team and the residents the opportunity to really get to know each other.

“We could also develop the life skills facilitator role to its truest form, because everybody was very much working together dealing with the crisis, supporting each other and supporting the residents.

“It was a testing time but it actually it brought the team together, bearing in mind the facility opened literally as everything was going into lockdown.”

The creation of the COVID-secure visitation suite is just one example of the creativity with which all at Inspire approach care, Michelle says.

By looking to build collaborations with other organisations, Michelle also hopes to share her hard-won knowledge, potentially becoming involved in research and training in the future.

Despite the upheaval of its first few months, the Inspire team has already achieved some successful patient outcomes.

One such success story is the case of Adrian, who came to the centre for specialist neuro-rehab following a car accident in which he suffered a severe brain injury. In the months that followed, Adrian’s journey enabled him to walk out of the service and return home to his wife and children.

(See Adrian’s story below – and read more here).

While the coming months may bring more challenges, as COVID lingers and vaccinations are rolled out, the Inspire team seemingly has the skills, approach and dedication to rise to whatever the future holds.

www.inspireneurocare.co.uk

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Interviews

‘My brain trauma caused my head to turn 180 degrees’

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Sarah Coughlin

Sarah Coughlin experienced the horror of her head facing backwards after sustaining a brain injury. Here she shares her recovery journey with NR Times.

“I was wondering why my windscreen had black lines across it – until I realised I was looking out of my back window.”

Sarah Coughlin recalls the horrific moment she realised her head had turned 180 degrees to face backwards, due to brain trauma she had suffered after sustaining a head injury.

In the immediate aftermath of the injury, Sarah recalls little seemed wrong aside from a persistent headache.

But five days later, when she woke up late and rushed out to her car, the extent of what had happened became all too clear.

“I could feel this searing pain through my shoulders and my back,” says Sarah, as she realised her head had turned around to look out of her rear windscreen.

“It was quite difficult to turn my head back around and keep there but after a while I managed it, though the pain did not go away.

“I thought I had just slept funny and once I had properly woken up the sore neck would probably calm down. But when I got to work I still felt awful.”

This began the long process of diagnosis, which took years to achieve.

“I went to A&E every week for three months because the pain wouldn’t go away and I was still getting neck spasms,” she remembers.

“I was told it could have been a slipped disc, a muscle injury or having slept awkwardly. It changed each time.

“I was in agony constantly, but I still wasn’t diagnosed for at least another two years.”

At first only Sarah’s neck and walking were affected, but over the course of a year she developed spasms, optical neuralgia, pressure on the occipital nerve which runs through the neck up into the scalp, causing tremors, fits, paralysis and fatigue.

Eventually, she was diagnosed with dystonia – a condition which causes involuntary muscle spasms and was the cause of her head rotating.

Doctors also told her she had a Functional Neurological Disorder (FND), a variety of medically unexplained neurological symptoms which appear to be caused by problems in the nervous system.

After her injury in 2014 and its consequences, Sarah could no longer drive, do her job as a teaching assistant – a role she loved – or take part in the same social activities as before.

She also lost touch with many of her friends and hardly left the house as she was scared of people staring at her and judging her for the way she walked and moved.

The 37-year-old, from Fazakerley, Liverpool, says: “I used to be quite fiercely independent – so to go from doing so much to not being able to do anything was the hardest transition.

“I felt a real sense of loss for the life I had when I was first diagnosed.”

In 2017, Sarah discovered The Brain Charity, a national charity based in Liverpool which provides practical help, counselling and social activities for people with all forms of neurological condition.

She made new friends by joining the charity’s craft club and received help getting carers allowance for her partner John and with finding a new home as she could not use stairs safely anymore.

One night in Autumn 2019, John woke up to find she had turned blue and stopped breathing as a spasm had caused Sarah’s neck to contort, closing her throat and airways.

The only solution was a specialist bed which cost £10,000, which was achieved through fundraising and grant funding. She managed to raise the money last year, and now has a bed which uses deep massage cyclo-therapy to improve circulation and reduce her symptoms.

Sarah is now a passionate supporter of The Brain Injury Charity for the assistance it has given, and is keen to encourage people to donate. The charity’s resources are currently under unprecedented pressure as a result of the COVID-19 pandemic, with a 70 per cent increase in referrals met with a huge decrease in fundraising.

“There’s lots of things I can’t do anymore but The Brain Charity has freed me from staring at four walls,” says Sarah.

“They helped me achieve goals that without them I wouldn’t have been able to do.

“It seems obvious, but the more money people donate, the more people the charity can give the vital support I found so important.

“I want other people to have that place that is safe and secure, in an environment with people who have had similar experiences.

“The Brain Charity has given me such incredible support and I’m so grateful for it.”

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‘I’d never imagined using Zoom as part of my physio placement’

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Tabitha Pridham is a third year student at Keele University. 

Every aspect of neurophysiotherapy has had to adapt with the onset of COVID-19, including how students prepare for a career in the profession. Here, student Tabitha Pridham discusses her experience of a pandemic placement.

Prior to the COVID-19 pandemic, the concept of physiotherapists routinely holding sessions with clients remotely was quite  unlikely.

While used to some degree in a small number of practices nationally, telerehab, as it has now become widely known, was not on the agenda of many.

But due to its seismic rise during the past few months, with physios realising the potential of digital and virtual means to see clients when meeting in person isn’t possible, it seems telerehab is here to stay. 

While it was never part of the studies of aspiring physiotherapists, they are now having to adapt to something that will most likely be part of their future careers.

“The very nature of physiotherapy is that it is hands on, so it seemed really strange to me at first that we would be using Zoom to do online physiotherapy,” says Tabitha Pridham, a third year student at Keele University.

“But I have seen how useful it can be, particularly for those patients who are very advanced in their recovery and maybe can take part in a few classes a week remotely. I think it can be valuable in addition to face to face treatment.

“I do believe it will carry on into the future, particularly in private practice, so have accepted that telerehab will be something I will be using in the longer term.”

For Tabitha, currently on a placement with neurological physio specialist PhysioFunction, telerehab is not the only big change from her expectations pre-pandemic.

“The use of PPE is something I have had to adapt to,” she admits.

“Every time you see a patient in person, you have to change gloves and thoroughly wash down equipment, to be compliant with the very high hygiene standards.

“This can be time consuming, and when you have back to back appointments I’ve found it can be quite stressful to ensure you’re doing everything you need to do in addition to your work with patients, but that’s something I’m learning as I go.

“Wearing a mask and visor isn’t always ideal for communication, but that’s something else I am finding gets better with time and use. Although it can be quite a juggle when you’re trying to treat a patient with one hand, and trying to stop your visor falling off with the other!”

Tabitha is based in the clinic four days a week, but has to work from home one day a week due to the need for a regular COVID-19 test, to ensure the safety of clients and colleagues alike.

“I have my COVID test every Monday, so I carry out consultations by Zoom that day, and providing my test comes back negative, I see patients in person Tuesday to Friday,” she says.

“I find the mix of telerehab and practical experience is really useful, especially as we are going to be using Zoom and the likes in the long term.”

Having had a previous placement cut short in April due to the pandemic, Tabitha is grateful she is able to get such experience, which accounts for vital clinical hours training for her degree course.

“Some of my year group were taken off their placements and have had to do everything virtually, so I’m lucky that I have been able to continue in a clinic,” she says.

“I’m still getting the same training, as aside from the PPE and new rules around social distancing, clients get the treatment they always have done so the practical work is the same.”

Tabitha is set to graduate in summer 2021 and has the experience of her studies, supported by three years of placements, to help her build a career in physiotherapy.

“In some ways this has been a really weird time to be working in physio, but in others it has been a very good time. This kind of experience prepares you for anything and everything, and the use of telerehab has shown me what it will be like in the future,” she adds.

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