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Brain injury

Confidence rising among rehab clinicians – but tech concerns remain

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Almost 80 percent said their clients responded well to remote working

A study has laid bare the pressures facing paediatric neuro-rehab professionals at the height of the pandemic, and how they were able to quickly adapt to new working practices.

It also highlights the need for greater support for families affected by neurological conditions in accessing technology; and for more research into the efficacy of remote interventions.

The Paediatric Neuro-rehabilitation Special Interest Group (PNR-SIG) charted the experiences of professionals from the start of the first lockdown and throughout subsequent months. Respondents were largely clinical or educational psychologists involved in paediatric neuro-rehab.

The research shows that confidence and competence in the delivery of remote care grew among practitioners as the crisis continued.

While families also became more competent, however, concerns remain that some still need more support in accessing technology.

Participants also underlined the necessity to continually monitor the impact of remote working on service delivery – including in terms of cost-effectiveness, commissioning services and services access.

The findings also show an enthusiasm for new possibilities within community rehab on the back of the COVID-fuelled remote revolution.

Eighty per cent of respondents felt confident in their ability to deliver interventions and rehabilitation remotely.

Respondents reported that 78 per cent of their clients/patients had responded well to working remotely.

The majority (89 per cent) of respondents had access to necessary technology, however for families, access to technology was less, with only 17 per cent ‘definitely’ having access and 50 per cent ‘probably’ having access.

Most respondents indicated that they would continue to offer remote interventions post-pandemic (42 per cent definitely; 42 per cent probably).

Overall 36 PNR-SIG members from a range of care settings responded to the survey. They included 31 clinical psychologists, four educational psychologists and a researcher/academic.

Prior to the pandemic, almost all respondents reported that assessments and interventions were only offered face-to-face.

Some respondents used remote methods (usually phone) for delivering psychoeducation with schools (47 per cent), families (39 per cent) and for wider team liaison (36-53 per cent, depending on type of liaison).

Psychologists reported a shift from working mainly face-to-face and via a phone call, to a range of remote methods during lockdown.

These included phone (69 per cent), video link (80 per cent) and online (22 per cent).

Some face-to-face working continued (22 per cent). These methods were maintained after lockdown and into the autumn 2020 period, with a ‘blended’ approach of face-to-face and remote delivery.

The ability to offer comprehensive neuropsychological assessment during lockdown reduced for most respondents with a minority reporting delivery of face-to-face neuropsychological assessments (25 per cent).

Approximately half of respondents offered assessment remotely (53 per cent).

After the first lockdown, face-to-face assessments reverted to almost pre-COVID levels (29 respondents post-lockdown compared to 35 pre-lockdown) and many described trying to clear the backlog of assessments.

Recalling the impact of the first lockdown, co-author of the study, Dr Emily Bennett, a consultant clinical psychologist at Nottingham Children’s Hospital, tells NR Times: “It was a very difficult time for everybody.

“There was a real genuine anxiety about how we were going to deliver assessments and how we’re going to continue doing the work that we were doing as we just didn’t have the technology.

“Adapting to the lockdown had its really challenging weeks. But actually, the way it panned out is we now have more access to different ways of working than we have ever had.

“COVID in some ways has given us opportunities that we may not have had before.”

In the report, clinicians voice concerns about the exclusion of vulnerable families with fewer resources and children who found remote interventions too difficult due to their level of functioning.

Dr Bennett says: “We know from the news, this is a huge problem nationally. Technology poverty isn’t something that’s just unique to the situation we’re dealing with. Schools are facing this all the time.

“There are different ways of working around it but it’s definitely a question mark as to how we make that access more equitable, because it doesn’t feel very equitable at the moment.”

Fellow author of the report, Dr Sophie Gosling, clinical lead and consultant clinical psychologist at Recolo UK Ltd, agrees that technology access is a pressing matter in neuro-rehab.

“I know there’s stuff that has been done through schools to get laptops into homes,” she says. “But, there are also things like having a decent internet connection.

“I would say this is something that has to happen at a much higher level if there’s going to be equity of access for everybody.

“Certainly, in my experience, some of my colleagues have found that there are children who didn’t have laptops before who now do, because they’ve been provided with them from school.”

The PNR-SIG was launched in 2018 in response to a lack of opportunities for clinicians to get together and share ideas.

“Paediatric neuropsychology is a relatively new area of work for many psychologists. It’s not something that’s been funded very much in the UK until recently,” Dr Bennett says.

“We’ve seen a big rise in the numbers of people who are actually getting the chance to do this sort of work, so we felt like it would be really important to have a place where people could collaborate to make sense of the world we’re all working in.”

The group now has over 100 members and is looking to conduct further research into the impact of COVID-driven restrictions and issues related to the impending easing of such measures.

Other authors of the report were Dr Suzanna Watson, consultant clinical psychologist, Cambridge and Peterborough NHS Foundation Trust and Cambridge University Hospitals; and Dr Catherine Harter, clinical paediatric neuropsychologist, The Cambridge Centre for Paediatric Neuropsychological Rehabilitation.

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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