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Brain injury

The role of the pioneering Linkworkers

The Disabilities Trust is helping to support prisoners with the ‘hidden disability’ of brain injury

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Bright blue cell doors being unlocked by man with a gold set of keys to highlight the problems in the criminal justice system for those with a brain injury

Brain injury in adult males, women and young people within the Criminal Justice System is up to five times higher than the general population. The Disabilities Trust has, over the last ten years, developed an innovative service to challenge the criminal justice system to adapt to the needs of individuals with impaired neurofunction due to a brain injury. Here, the charity’s Linkworkers share what it is like raising awareness of this hidden disability in prisons

 

Brain injury Linkworkers offer a unique and individualised service, aiming to ensure that those involved in the Criminal Justice System, who have suffered a brain injury, are adequately supported.

Often, those with a brain injury can fall through the cracks or be missed by other services, perpetuating the cycle of reoffending as a result of a lack of appropriate help. Linkworkers act as the link between individuals and the support they need, improving engagement with staff and services, and helping to provide a structure and informed environment considerate of their difficulties and needs. 

As a result of Linkworkers’ interventions we see significant reductions in severe anxiety and depression as well as fewer adjudications and incidents of challenging behaviour by as much as 93 per cent.

To give context, we already know that brain injury is incredibly prevalent amongst those who become involved in the criminal justice system, with research conducted by The Disabilities Trust finding rates of between 40 to 60 per cent.

The crucial first step towards supporting someone with brain injury is by identifying it. So often, we see someone who may not be aware they have sustained damage to the brain; having ‘brain injury’ and what this might represent to them would never have crossed their mind.

Despite this, they can rattle off a list as long as your arm of times they have had a severe head injury, have been knocked unconscious, and even ended up in hospital as a result. It is not uncommon for even documented brain injuries to not be considered as contributing factors in a person’s presentation or behaviour.

Instances where people have been left in comas and strokes may be in someone’s medical records, but they can walk, talk, and hold a conversation seemingly well – so they must be okay, right? We raise awareness of this ‘hidden disability’ and how, even in its mild to moderate forms, can have such an impact on the everyday lives of those affected.

Brain injury can have a diverse and profound range of consequences; in addition to the physical impacts we often see, it can affect someone’s behaviour, emotions, cognition, and personality.

What makes this problem more profound in the HMPPS and for those who have offended, is that the common consequences of brain injury such as apathy, impulsivity, increased aggression and memory deficits, result in behaviours that are so readily assigned to the ‘criminal’ stereotype. The difficulties of those affected are misattributed and the problem is perpetuated, people going their entire lives without receiving appropriate support

As Linkworkers, we screen individuals who may have experienced a brain injury and provide clinics to assess an individual’s difficulties. We encourage the use of cognitive rehabilitation skills and strategies, and support with signposting them to appropriate community services once released from custody.

Ultimately, the service takes a very person-centred approach, tailoring support sessions around level of insight, restorative capacity, readiness of change and areas of deficits. This is necessary as every individual has their own needs and expectations of ‘recovery’.

Intervention is goal-orientated and by encouraging service users to set their own targets, we support self-efficacy and help to rebuild confidence that is often lacking. When supporting those with brain injury, it’s amazing how a little education and the simplest of strategies can make such a difference to someone’s day-to-day life; by providing understanding and supporting independence you can add structure to the chaos and better enable someone to succeed in the community.

Another important aspect of our role is to provide staff support and training and The Disabilities Trust has provided Brain Injury Training to over 2000 professionals.

We promote the use of ‘Ask, Understand, Adapt’ which outlines the necessary first steps that we as professionals can make towards identifying and supporting those with brain injury.

As a two-woman team there are not enough hours in the day to support every individual in every prison and probation service. Instead, we train Brain Injury Champions; these are people who work within the criminal justice system, who become confident and competent in spotting and supporting those with a brain injury.

We are supervised by a Consultant Clinical Neuropsychologist who can offer expert guidance and consultancy in the care of complex individuals. By ensuring that staff feel supported in their role, we can facilitate better communication and engagement, which has a positive impact on both the service users and staff involved in their care.

A typical day in prison starts early. In order to catch residents before they head off to work in the morning or begin their daily routine, we are often found whizzing around the wings at 8am, performing brain injury screenings with residents who have been referred to the service.

These referrals can come from various prison staff including healthcare, prison officers and offender managers. Another useful tool in our belt are the Samaritan Listeners and Insiders; these are residents of the prison that support others who may be struggling or have never been in custody before. They are in a perfect position to identify brain injury, have received brain injury training in a similar way that the staff have, and often refer people to the service.

Later that morning, we might attend multidisciplinary team meetings headed up by the Safer Custody team. In these meetings, department heads come together to discuss residents who exhibit behaviours that challenge. This might include those with complex mental health problems, as well as brain injury.

Outside of these meetings, we liaise with staff on a 1:1 basis, typically to share information about specific individuals on our caseload, discussing where they require the most support and how to best provide this. We act as the link between residents and the staff responsible for their care, advocates for both parties.

In the afternoons, from 1pm to 4pm we run brain injury clinics, in these sessions, residents will be brought over to healthcare for their intervention session. If it is their first session, we take time getting to know their stories, and understanding their difficulties through assessment and clinical interview.

Together, we will set goals and plan how to action these, checking in every week on progress and any obstacles met. Those with brain injury typically learn best by repetition, habituation, and routine; this is considered and reflected in clinic plans whereby information and strategies will be rehersed together between sessions until it is fully understood and integrated. 

The COVID pandemic presented a unique challenge and adaptations had to be made to our service. In the original lockdown, we adapted our interventions so that they could be delivered remotely. This meant that though we couldn’t be physically present, individuals were not left with nothing.

This was also the case with the probation hostels. With fewer individuals in residence, we spend less time being a physical presence in probation, instead working remotely with staff. We can be involved in MAPPA (multi agency public protection arrangement) meetings and offer insight into managing complex individuals in the community. 

Services including mental health teams and teams supporting learning disabilities do great work, but they are not designed to meet the needs of those with brain injury. The Linkworker service sets out to give brain injured individuals a voice; By listening to their difficulties and communicating these with fellow staff, we can devise better care for people who would otherwise be stuck in a system with limited understanding of how to support them to succeed.

A Linkworker’s day involves banging the brain injury drum but is something we will continue to do until specific brain injury support is an established and integrated part of the prison and probation service. 

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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