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Brain injury

N-ROL’s telerehab delivers ‘significant’ progress to survivors

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A pioneering telerehabilitation initiative which enabled people recovering from acquired brain injury to continue their therapies during the pandemic has reported significant progress for participants during the programme. 

The evaluation of Neuro-Rehabilitation OnLine (N-ROL) and the fact participants “significantly improved on the two planned quantitative outcome measures” provides further academic analysis to support the hugely positive anecdotal evidence about the impact of telerehabilitation, which has grown exponentially in its use during the past year. 

N-ROL, a multidisciplinary group-based programme, was established in response to the reduced access to continued rehabilitation for people living with the effects of ABI, including stroke survivors, during the COVID-19 pandemic, at a time when their need for support was increasing.

A three-way collaboration between University College London (UCL), University College London Hospitals NHS Foundation Trust (UCLH) and brain injury recovery charity SameYou, N-ROL offered a range of groups that encompass the main areas of unmet need for patients with ABI including physiotherapy, occupational therapy, speech and language therapy, neuropsychology and neurology.

N-ROL is now being rolled out into East Lancashire Hospitals NHS Trust, working alongside the University of Central Lancashire, and again financed by SameYou’s fundraising. 

In the findings of its pilot project at UCL, over a 15 week period, 86 stroke survivors participated in N-ROL after being referred by community or hospital-based rehabilitation teams, receiving therapy remotely through the programme. 

Their progress was charted against two outcome measures – the 13-question Stroke Self-Efficacy Questionnaire (SSEQ) and the seven-question Neuro-Rehabilitation OnLine Outcome Measure (N-ROLOM) for patients and two for carers or family – which set targets and aspirations for patients to work towards. 

Now, in an evaluation of the project published in the BMJ, patients who took part in N-ROL – which was led by Professor Nick Ward, from UCL Queen Square Institute of Neurology – are found to have “significantly” improved on the two defined outcome measures during the period. 

“The post hoc analyses suggest that participants gained the most from (1) psychoeducation around ABI, including hearing other people’s stories; (2) gaining advice on how to better structure their day; and (3) perceived improvements in their motor function (meal preparation, balance and walking),” the report states. 

Each patient attended on average 27.1 sessions through N-ROL, a mixture of physical and talking therapies, with an average of 5.4 patients per group.

The evaluation concluded: “N-ROL, like all therapist-delivered rehabilitation, is complex with many interacting components. Each group was delivered by highly skilled and specialist neurotrained therapists. 

“We speculate that key elements to its success are (1) the multidisciplinary structure of the team; (2) using groups, which allows participants to gain and identify with each other; and (3) the holistic and systemic nature of our therapeutic approach (treating patients in their own home and targeting their carers for specific interventions).”

Jenny Clarke, CEO of SameYou – the charity founded by her daughter, world-famous actress Emilia Clarke after surviving two brain haemorrhages, to give a voice to fellow brain injury survivors and to deliver better holistic rehabilitation care – says: “SameYou’s mission has always been to develop better recovery treatment for survivors of brain injury and stroke, but when COVID hit, we knew that something needed to be done fast to help survivors impacted.  

“We are immensely proud of our work with Nick and his whole team at UCL. Their vision and ambition to help patients, and to do so under the enormous pressures of COVID, is first-class. We look forward to seeing N-ROL grow and reach more patients across the UK and beyond.”

Brain injury

‘Take urgent action on rugby player safety’

Rugby’s authorities must act now to protect players at all levels, following publication of the landmark BRAIN study

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rugby players in a scrum with their heads and shoulders down

Rugby’s governing authorities are being urged to take “urgent preventative action” to protect players at all levels of the sport after new research suggests the game may have been safer in the pre-professional era. 

The BRAIN study, published today, found that former elite rugby players who experienced three or more concussions during their career did not have worse cognitive function before the age of 75 than those who had experienced no, or just one or two, concussions. 

The study found no overall group association between concussion history and worse cognitive function, but did find that 29 per cent of over 75s who had sustained three or more rugby-related concussions during their career had significantly worse cognitive function.

However, results from the BRAIN study – funded by The Drake Foundation, which worked with 146 former elite rugby players in England aged 50 and over, most of whom played in the pre-professional era – call into question whether safety standards in the sport have worsened since the game became professional.  

Several retired players from the modern era have recently been diagnosed with early-onset neurodegenerative disease and likely Chronic Traumatic Encephalopathy (CTE). 

In addition, the neuroimaging results of the Drake Rugby Biomarker Study, published earlier this year, found that 23 per cent of current elite adult rugby players tested had abnormalities in brain structure, and half showed an unexpected change in brain volume.

The Foundation has also been vocal in its campaign to make recommendations around safety in rugby and football enforceable rules, and is now calling for further immediate emphasis on player welfare. 

“These findings are broadly reassuring for players from the amateur era,” says Lauren Pulling, CEO of The Drake Foundation. 

“However, given the findings of the Drake Rugby Biomarker Study and recent cases of early-onset brain disease in ex-players from the professional era, the new study results do call into question how long-term health might differ in players from the modern era.

“The evidence we have so far suggests that the sport may actually be travelling in the wrong direction in terms of player welfare and brain health. 

“In addition to further research, we therefore also urge the sport’s governing bodies to review the modern game’s laws and protocols and take urgent, preventative action to universally reduce players’ exposure to head impacts both in matches and training.”

Additional research carried out this month on behalf of The Drake Foundation by Censuswide, via an online survey of 508 respondents in the UK who are involved in rugby union, found that 62 per cent of adults who either play amateur rugby or have a child who plays rugby are concerned about the long-term effects of the sport on their or their child’s brain health. 

This figure rises to 73 per cent for parents who do not play the game themselves, but who have a child that does.

Over 60 per cent agree that rugby has become a more dangerous sport at all levels since it turned professional in 1995, whilst 66 per cent believe that rugby union would be safer if fundamental law changes were introduced to better reflect the way the sport was played in the pre-professional era.

James Drake, founder of The Drake Foundation, says: “As a passionate sports fan who loves rugby, I’ve witnessed first-hand the way the game has evolved since turning professional. 

“In my view it’s a sport that has become ostensibly less safe for the players involved and my concerns are reflected by our research this month, which reveals 61 per cent of adults who either play the game or have children that do, are concerned about the sport’s long-term effect on brain health.

“A further two thirds of adults believe the sport could be made safer if law changes were introduced to return it to the game as it was played in the amateur era. The Drake Foundation is calling on rugby’s authorities to give this immediate consideration to protect the sport we love and the current and future generations who play it.”

The BRAIN study is the first to carry out detailed measurements of cognitive function in a large number of former players and to relate this to their concussion and playing history. 

It was conducted by the London School of Hygiene & Tropical Medicine, Queen Mary University of London and the Institute of Occupational Medicine with researchers from UCL and the University of Oxford, and with assistance from the Rugby Football Union (RFU). 

It is also the first to include substantial numbers from the over-75 age-group. Previous studies which have focussed on younger players have found little or no association between concussions and reduced cognitive function.

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Brain injury

Digital information boosts GPs’ support for brain injury survivors

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Brain injury survivors can now access digital information from their GPs to help increase the levels of support and signposting currently available through a new partnership. 

Headway has teamed up with online platform Healthinote to help GPs to give survivors and their carers and families personalised information, which is sent to them digitally after their appointments to read and digest at home. 

The ‘health information prescription’ is presented through visual, immersive and interactive content, and increases both the range and accessibility of virtual resources available to people living with brain injuries. 

Healthinote, which is integrated into the eConsult platform, is in use in over 1,700 GP practices nationwide and can be accessed by over 13,700 GPs. 

The availability of dedicated brain injury resources from Headway, presented via the accessible and engaging channels delivered by Healthinote, is enabling GPs to increase their support to survivors and maximise use of what can be used to support patients remotely. 

“We want to empower people to understand their treatment or condition and supply them with the right health information at the right time,” says Alex Merckx, director of marketing and partnerships at Cognitant, the business which developed and manages Healthinote. 

“Getting accurate information into patients’ hands is very important. Consultations with your GP are very quick and there can be a lot to take in, and while they tell us not to Google things afterwards, of course we all do, and that can lead to misinformation. 

“By using Healthinote, GPs can supply verified, trusted, accurate information to patients and carers, and supplement the work they do face to face. The information is saved to a patient’s electronic record, so if they go on to see a doctor or nurse afterwards, things can be more joined up and they know what resources they have had access to. 

“We are trying to add value to a GP consultation and effectively maximise the customer experience that you would expect from any service, to ensure patients can go away with the information and signposting they need in a format they can understand.”

“The complex, fluctuating and often hidden effects of brain injury can make it difficult for people to get the help and support they need,” says Peter McCabe, chief executive of Headway.

“We recognise the challenges faced by GPs in not only understanding the complexities of brain injury, but also signposting survivors and carers to specialist information and services.

“Too many people slip through the net and are left to cope with impact of brain injury without help of support.

“That’s why this partnership with Healthinote is so exciting.

“It will make it easier for GPs to provide patient or carer-specific information from Headway, whether in the form of our award-winning publications or signposting to local Headway groups or branches, helping us meet our goal of ensuring no one has to deal with brain injury alone.”

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Brain injury

‘Revise way concussion is viewed to achieve real change’

“We’re getting it wrong in society and healthcare,” says Dr Adam J White of the Concussion Legacy Foundation UK

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Views of concussion in society must be altered, alongside much-needed revision of protocols in sport – particularly at grassroots – if change in how head injury is viewed and dealt with is truly going to happen, says Dr Adam J White, executive director of the Concussion Legacy Foundation UK. NR Times learns more

 

Since the launch of the UK chapter of the Concussion Legacy Foundation (CLF) last month, its accompanying helpline has seen huge demand for support from veterans and amateur athletes concerned at the impact of their head injuries and the implications of sustaining them.  

The CLF has set ambitious targets to prevent new cases of Chronic Traumatic Encephalopathy (CTE) within five years and of finding a cure by 2040. 

And in being able to achieve that, Dr Adam J White, executive director of CLF UK, says as well as making the necessary changes within sport to protect players, concussion must also be recognised for its seriousness in wider society. 

“Concussion is an issue in sport, it’s an issue in the military, but it’s an issue in everyday life. And it’s an area where we’re just getting it wrong in terms of society and healthcare,” Dr White tells NR Times. 

‘We’re not doing enough to support people with mild traumatic brain injuries, they’re falling between the gaps. They’ve got some real complex needs that aren’t being catered for by the NHS in the UK at the moment, and that’s a real worry. 

“Through the helpline, we’ve had a huge number of people seeking help with their concussions and I think more and more people will be presenting to us. And I hope more and more people do, because it’s not trivial, it is important. 

“These are serious injuries, each and every one of them, so they do need to be given support for that condition.

“At the moment, the kinds of guidance they’re getting is inadequate, they’re often being told to go home and rest and are often given very little other information. Depending on which hospital you attend depends on what kind of information you’re going to get.

“Often, there’ll be no further referral or no follow-up, typically you’re told if anything deteriorates come back, but people are often not given any treatment plans or support with a huge raft of needs from motor needs, coordination, headaches, sleep disorders. People are then left to fend for themselves, which can impact significantly on their lives.”

Through the work of CLF in its native United States and its role in establishing the world-leading VA-BU-CLF Brain Bank in Boston – which it is now building further around the world, including in the UK with the creation of the CLF Project – huge advances have been made in understanding the causes of CTE, with links now proven with repeated head impacts over a period of time. 

As a result, CLF’s founder Dr Chris Nowinski – whose exposé of NFL safety protocols in 2006 is credited as revolutionising the sport – has become a leading advocate of the need to protect children from the impact of heading. 

“Delaying heading as much as we can to restart it much later is a really great first step,” says Dr White. 

“By saying there will be no heading until 14 or 16 or 18, we’re reducing our exposure, which would be fantastic. It’s not a core component of the game. It could be removed and most of the game would maintain its beauty, its fun, its enjoyment. So that could be a great first step. 

“Sport is a difficult nut to crack but we can affect changes. We’ve given sport five years to stop all new cases of CTE, but we could do it tomorrow. The reality is we know how to make this condition stop, but we need to be bold enough and brave enough to make the change. 

“What we need to do is reduce the exposure, and then making sure that in tandem with that, we are making sure when players do get concussed, that we deal with it properly, so we’re not returning players the same week, we’re making sure they have plenty of time to rest and recover.

“We’re making sure that they’re not putting their brains through lots of extra stress and they’re not coming back to full contract sessions. We need to see all of those those policies and protocols put in place.”

While change is indeed starting to happen, with measures being taken including restrictions on full-contact training in rugby and high-force heading in football training, Dr White says advocacy has a huge role to play in driving this forward further still. 

“I think in terms of preventing this issue in the future, it’s about the players, it’s about the parents and the grassroots game,” he says. 

“Athletes often forget the power they have. If they decide to vote with their feet, if parents decide that they’re not going to let their kids do this anymore, it’ll change. But we’ve seen there has been plenty of opportunity for sport to make the change themselves and they’ve never been brave enough to do it. 

“Now, we’re seeing more and more people saying, no, we’re not going to allow this. People are asking do I want my daughter to be heading the ball, do I want this for my child, and we really need them to continue to do that. Children can do so many other kinds of physical activity and exercise but without the risks.”

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