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Brain injury

‘Don’t count the days, make the days count’

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In our latest interview with the Brain Injury team at St Andrew’s Healthcare, we meet Dr Lorraine Childs, a Consultant Clinical Psychologist on Rose ward, one of only three secure neurobehavioural units in the country.

Dr Childs and the team on Rose use a neurobehavioural approach that supports people who have a forensic background to re-learn skills that have been impacted by their brain injury.

As she explains: “Unfortunately, brain injury can result in an increase in aggression, so we do a lot of work to identify what a patient’s goals are and help them to achieve their aspirations in pro-social ways that preclude the use of aggression.”

Co-production between patients and the clinical team has led to the development of programmes such as ‘Better Lives’, used to encourage people to take an active role in decisions about their care. These type of approaches are transferable across all settings where people are receiving support and rehabilitation following a brain injury.

We spoke to Lorraine to find out more.

What is your experience in mental health? 

I have worked in mental health for over 25 years. I have worked across the UK including St Andrew’s, Broadmoor, Rampton and in New Zealand.

I specialise in Forensic Brain Injury. I used to specialise in LD but became very interested in the etiology of learning disabilities and people who had ABI from an early age.

Dr Lorraine Childs

What are the challenges in your role? 

People who have a brain injury and require secure care tend to benefit from consistent, structured treatment.

Many of our patients are negatively affected by change and inconsistency. Working with large groups of staff can make it difficult to keep things consistent and this has been especially pronounced during the pandemic. I try to counter this by keeping things simple and comprehensive.

What do you most enjoy about your role? 

Working with a team of staff and patients. Creating things together, that are meaningful and purposeful. 

On Rose we have a really good structured neurobehavioral programme, developed by staff and patients, which works at both a group and individual level.

Describe the service you work in and some of the approaches that you use.

Rose is a medium secure neurobehavioral ward for people who have forensic backgrounds. Unfortunately, aggression is one of the things which can accompany brain injury and this is why some people need secure care to keep them safe.

We work with a neurobehavioural paradigm, helping people to learn new skills or relearn skills that have been affected by brain injury. We give patients opportunities through extensive vocational options and a range of therapies. 

Our ‘Better Lives’ programme provides people with opportunities to learn life skills. Patients really understand that they are here as part of their journey to achieve a better life.

In fact, our ward icon and motto is Muhammad Ali and his quote; ‘Don’t count the days, Make the days count’. In other words, the patients can influence their own future every day.

Co-production is key to this programme. For example, as a result of ‘Better Lives’ sessions we have co-produced a ward clinical treatment philosophy, a healthy-living programme and an information leaflet for newcomers. Patients requested for this to include information about timetables, events, contacting family and there is a poem written by a patient about their experience of moving here. Feedback about this is positive, one new patient said “it is informative and puts the mind at ease”. 

We encourage patients to take an active role in decisions about their own care, especially via Positive Behavioural Support Plans and utilising feedback. Increasing involvement encourages ownership and responsibility, even within a necessarily restrictive setting, and can help equip patients for their future in settings of lower security and community.

Describe a typical patient presentation.

There is a very diverse group of patients on Rose ward. Ages range from late teens to 60s. If I had to describe a ‘typical’ patient it would be a male in his 40s who had a brain injury in his 20s, usually because of a road traffic accident or substance related, leading to a loss of functioning, cognition, social and physical abilities. 

Most people who come to Rose have spent up to 10 years in standard psychiatric inpatient units and often well over a year in prisons. In fact, 100 per cent have been in psychiatric units and 70 per cent in prisons but only 16 per cent have had any psychological or neurorehabilitation.

So for many, St Andrew’s is the first time they have had some treatment support for their brain injury needs. 

What is the difference between Rose ward and a general neurorehabilitation ward: 

Rose is very unique due to the forensic aspect of the ward. Rose specialises in working with people with high levels of aggression and working with people to help them to find alternative ways to express themselves and achieve goals.

What are the main interventions used: 

Our key intervention is the neurorehabilitation programme. This aims to assist patients in compensating for the deficits they have in communication, volition and motivation, by providing a scaffold structure where they can safely develop skills required for daily life that are lost because of their brain injury or lack of opportunities in early life.

We also do a lot of health promotion and healthy living work on Rose and have presented at conferences and won awards for our work. I think lockdown had a negative impact on most of our waistlines and so we have an opportunity for staff and patients to work together to improve our diet and wellbeing.

What sets St Andrew’s apart:

St Andrew’s provides a clear and structured pathway for neurorehabilitation patients, with evidence-based success for patient outcomes.

This shows how patients progress in terms of increased levels of cognition, social skills, reduced levels of aggression, and increased levels of leave within the community.

Most importantly however, the patients have the opportunity to move towards their life goals. 50 per cent of patients from our Medium Secure Unit go straight to community rehabilitation. Most others advance to low secure. All go closer to home. This is what we are here to do. We do it well and help to shape Better Lives.

St Andrew’s Neuropsychiatric service provides specialist pathways for brain injury, dementia and Huntington’s disease across secure, non-secure and step-down settings. To find out more visit the website HERE

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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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