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Brain injury

You are not alone

How St Andrew’s Relatives’ Support Group is helping to bring new levels of support to families affected by brain injury

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Through its Relatives’ Support Group, St Andrew’s Healthcare has played a key role in helping families deal with the aftermath of brain injury since 2005. NR Times learns how it is extending that commitment to supporting relatives at every stage of their post brain injury experience

 

Brain injury can be an utterly devastating, life-changing event, not just for the survivor, but for their family too. 

But having been thrown into such an unknown and dealing with the trauma of what has happened to their loved one, accessing the support and information to help rebuild their family can be hard to find. 

Where do I go? Who can I trust? Where can I ask the tricky questions? Who will really understand?

It was these very issues which underpinned the creation of the Relatives’ Support Group at St Andrew’s back in 2005. 

Led by Dr Keith Jenkins, a consultant clinical neuropsychologist who had previously established such groups whilst with the Priory Group, and the then-lead social worker Mary Lees, they recognised the possibility for families to be able to come together to share experiences, while also learning vital information. 

“When this absolutely life-changing injury happens, it can be a great struggle, not just for the injured person, but for their family,” says Dr Jenkins. 

Dr Keith Jenkins

“It’s easy to feel you’re the only one in this situation, that no-one else can understand what a struggle it is, that no-one else can be struggling to cope this badly. And that’s a really hard situation to be in, it can lead to isolation and make a very difficult situation so much worse. 

“But through family support, you can realise you aren’t alone. There are others in your situation. And whether it’s to find someone else who can understand, or to share the benefit of what they’ve learned along the way, the opportunity to do that can be hugely valuable.”

The monthly groups, hosted by the brain injury service at Kemsley, St Andrew’s Hospital, comprise a speaker focused meeting alternating with a peer support meeting – speakers have included a local MP, lawyers, therapists, social workers and benefits advisors – who tackle the issues families commonly face, empowering them with the information they need to know their rights and make informed choices. 

Family members of people living with brain injury from across Northamptonshire and beyond attend the meetings in significant numbers, whatever the stage of recovery of their loved one, with some people having attended for many of the groups’ 17 years in existence. Indeed, Mary Lees attended the group to co-facilitate for 15 years after retiring.

However, St Andrew’s recognised that, in addition to the support it delivers for families of those living with brain injury across the Northamptonshire community, relatives of those currently in its specialist ABI service perhaps needed something more specific to their needs.

“For some people this is very new, but for others they are a lot further down the road, and for those in the early stages, you’re not always ready to start thinking that far into the future,” says Dr Jenkins. 

“At first it can be especially challenging, so by meeting relatives in a similar position, whose loved ones may even be on the same ward, and sharing experiences, that can be very important.”

That has led to the creation of a second group, which welcomes relatives of those currently with St Andrew’s. While a very recent creation – it launched in November 2021 – it has been welcomed and continues to attract new people to each session. 

Both groups are overseen by Dr Jenkins and social worker Jodie Keeley, and are currently run virtually – having been paused for the first time in their history due to the Pandemic in April 2020, and resuming online in November 2020. Remote access enables relatives from around the UK to access the support of the group wherever they may be geographically.

Whatever stage a family has reached in their experience of adapting and living with the effects of a loved one’s brain injury, both groups are dedicated to providing a much-needed forum for relevant support and information. 

“In a recent group, a family member said that it can actually be the relative who suffers more than the patient – patients sometimes don’t realise they’re in hospital, or that they have been in hospital for so long, and they have the benefit of activities to take part in and people around them to help,” says Jodie. 

“But for the relatives, they’re having to get on with their daily lives, going back to work, living at home on their own, worrying all the time about their loved one and what the future might hold. 

“It’s absolutely vital for these families to have access to support, as it can be a very, very difficult situation for them.”

“We hear all the time from relatives that it’s a battle, it’s very rare that we’ll hear someone say that things have gone smoothly or easily, or that they have not had to fight for what they’ve got for their family member,” says Dr Jenkins. 

“In this respect, it can be especially good to know that you’re not alone, that it’s not just you that has this battle. That can actually be supportive and reassuring in its own way, a kind of universalisation of the experience. 

“People often find it useful to sound off about the system and how rubbish they think it is, how frustrated they are, or to find out how other relatives have gone about it. And that’s why the interaction is so valuable, particularly among people who can otherwise be, and feel, very isolated.”

And aside from the experience-sharing and social opportunity, the access to practical information is equally important, says Dr Jenkins. 

“Through our speakers, we’ve always tried to choose people and areas that relatives are going to get a lot of benefit from, to answer the questions they have posed and to help inform them on some really important topics they may otherwise not know how to tackle,” he says. 

“Family members might not know who to speak to in social services to get things done, or what a Carer’s Assessment entails, all kinds of things they might not know how to get answers to. Through our groups, we can help to address the unknowns and get them their answers. 

“But sometimes, the information that we might have available as professionals or organisations isn’t necessarily always the information families feel that they want, or they need.  

“A case in point was at a recent meeting in our new group, when we were having a conversation about where could a couple of family members go with their loved one, when they come here to visit. 

“For them, the very practical concerns were what is available in Northampton? Where can we go with our loved one to get something to eat? Where is there a nice park? Where are the disabled loos? What’s the parking like?

“It’s those kinds of things that can make a visit into the community a positive experience or not. 

“Jodie and I have taken a lot from that, and we now have an ambition to put together a pamphlet to give to our relatives, to give them a guide to places they might want to take their loved one locally, and to include the answer to key questions, like parking and loos!” 

And while the groups are clearly of great value to relatives, they are of great value to the professionals, too. 

“When you’re at work, and it’s your job to be professional and in control of your emotions, you’re focused on doing your job,” says Dr Jenkins, who proudly keeps a cake topper made by one of the relatives for the third anniversary of the group by his desk. 

“You have to be managing your emotions in what are tragic situations that you’re working with the end product of. 

“But over the years, there have been many times through being able to listen to the relatives in the group, when you can just feel how awful it is. And to me, that’s always been really powerful. 

“In some sense, you can put yourself into their shoes, because they’re a mother, a sister, a brother, a husband, just like everyone else, and you can kind of relate to that by hearing what they’re going through. 

“And for me, that’s a kind of motivator. There are often times I’ve done one of the groups and feel much more focused and re-energised afterwards about the job I’m trying to do. So I think it gives back to us as well.”

Going forward, future logistics of the group are still being decided, and whether to run both in-person and online groups, or to go with one or the other. 

“We have relatives at present from as far away as Scotland, and we generally do get people from right across England, so the online groups for them work really well, as they don’t need to time their visit so they can attend a group in person, it’s much more flexible for them,” says Jodie. 

“But equally, there is a lot of value in doing this kind of thing in person, so we’re looking at maybe doing some of both – but the main thing is that we’ll continue to do all we can to support our families, and in every way that we can too.”

* Dr Jenkins is happy to speak with anyone looking to establish a similar support group for relatives of people living with brain injury. To contact him, email [email protected]

Inpatient rehab

Brain injury survivor fundraises for The Walton Centre

Karen Parry’s running club is fundraising for the specialist centre which saved her life

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A woman whose life was saved by The Walton Centre after an accident at home has inspired a fundraising initiative on behalf of the nationally-renowned specialist centre.

In December last year, Karen Parry was making her way up to bed when she fell down the stairs, hitting her head on the hall floor. 

Karen, from Prescot, was rushed to the Aintree Trauma Unit before being transferred to the neighbouring Walton Centre for life-saving brain surgery. 

“It was one of the most terrifying nights of my life,” recalls Karen’s husband, Gavin. 

“Karen was badly hurt, but I didn’t realise how badly until I was at The Walton Centre speaking to the anaesthetist about the emergency surgery she was going to have. 

“Mr Rasheed Zakaria and his surgical team saved Karen’s life, but they also took the time to calmly and compassionately explain Karen’s condition to me along with the steps they would be taking.”

Karen made it through the surgery at the pioneering Walton Centre and was put in a medically-induced coma to allow her brain to recover enough to be woken up later.

“I was visiting Karen in ICU every day with special permission due to the severity of Karen’s condition,” Gavin continues. 

“When I came in the day she was being brought out of her coma, I found her dedicated nurse brushing her hair, she said it was because removing the tangles would have hurt her when she was awake. 

“I thought this was very kind and thoughtful. They cared so well for her, it was outstanding.”

The 52-year-old spent over two weeks in ICU, having further corrective procedures before moving to a ward to recover further – spending Christmas in hospital.

Gavin said: “Karen had been assisted into the chair at the side of her bed for our visit, which was great to see. 

“At this stage Karen was too weak to spend much much more than half an hour sat upright and we were all really happy to be with each other.

“It was a lovely visit and we were sad to leave. As on any other day the staff were busy but lovely and kind.”

Then March this year, Karen was able to return home, after receiving rehabilitation with the Cheshire and Merseyside Rehab Network, hosted by The Walton Centre.

“Karen was so determined to get better, she’s so tough,” said Gavin.

“She kept getting stronger. The Walton Centre continued to support her. Mr Zakaria, the neurosurgeon who saved her life, sent a detailed letter to her GP to ensure they knew exactly how to support Karen when she did come home.”

While Karen was in hospital, her local running club Knowsley Harriers nominated The Walton Centre Charity as their charity of the year. 

Karen is Treasurer of the club and an avid running coach. Each month the club hosts ‘The Walton Centre Charity’ 5km run, which encourages members and non-members to donate to the charity. 

So far they have raised nearly £900 this year, and will continue to do so for the rest of 2022.

Gavin added: “The club has a number of links to the hospital, from other members who have previously been looked after there. We were delighted when they picked The Walton Centre Charity. 

“This was a very frightening time for my son and myself and very much a rollercoaster ride of emotions explained to us when Karen entered the unit. 

“Sadly, Karen remembers very little of her time in The Walton Centre but I have reminded her of the wonderful care which she has received.

“The nurses, doctors and therapy staff are truly inspirational, not only for their professionalism and incredible skills as medical practitioners but they also have the kind of qualities that cannot be taught in a classroom – care, love, kindness, understanding and humanity – they have them in abundance.”

Karen said: “Sadly, I remember little about my time in The Walton Centre due to the nature of my head injury. Gav has spoken to me at length about the wonderful people that cared for me there. I would just like to thank them all from the bottom of my heart.”

To donate to the fundraising appeal, visit https://www.justgiving.com/fundraising/khac2022

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Brain injury

Fact-finding tour helps creation of ABI Strategy

Chris Bryant MP and UKABIF visit three key neuro-rehab sites nationally

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Efforts to gather information which will help in the creation of the new Acquired Brain Injury (ABI) Strategy have been boosted through Chris Bryant MP’s visits to key neuro-rehabilitation sites around the country. 

The MP – chair of the All Party Parliamentary Group (APPG) on ABI, who has been instrumental in securing the go-ahead from the Government to create the Strategy – visited sites in Newcastle, Sheffield and Birmingham to gain greater insight into what provision exists and what more is needed. 

The Strategy has been hailed as being of vital importance in helping to support people living with brain injury and to help level the disparity in provision across the country.

Chris – also co-chair of the ABI Strategy Programme Board – visited Walkergate Park in Newcastle with UKABIF’s chief executive, Chloe Hayward, who is co-chair of the Strategy’s Patient and Public Voice Reference Group. 

The Tyneside centre provides neuro-rehabilitation and neuropsychiatry services for adults with a disability caused by injury or disease affecting the brain or spinal cord.

They met with staff and patients at the 64-bed centre, learning about the range of rehabilitation offered by its specialist neuro-rehab team, and the equipment and technology available to help people affected by ABI to live as independently as possible.

In Sheffield, they visited Steps rehabilitation centre, which provides 23 rooms for residential rehabilitation, and offers everything from hydrotherapy to music therapy, alongside the latest technology to benefit patients’ lives. 

On their trip to Birmingham Women and Children’s Hospital, to see what rehabilitation services are available for children, Chris met with staff, patients and families on a tour of the city centre hospital and also spoke with The Child Brain Injury Trust.

At each location, staff and patients were given the opportunity to say what they thought was needed to improve the lives of those living with ABI.

“These visits have been hugely helpful as we look to gather information and first hand views from people working in ABI neuro-rehabilitation,” said Chris, whose Private Members’ Bill led to the Government granting approval for the creation of the ABI Strategy. 

“If the ABI Strategy is to be fit for purpose, we need to know what is currently working, but perhaps more importantly, what isn’t working in order to ensure the needs of people with an ABI are properly addressed.

“I want to say a huge thank you to everyone we met for sharing their experiences for us to consider as we take the Strategy forward.

Chloe Hayward said: “Being able to see and speak to both staff and patients means we have real life experiences from people. 

“As co-chair of the Strategy’s Patient and Public Voice Reference Group, I want to make sure patients’ views are taken into consideration when the Strategy is being established.”

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Brain injury

New therapy reduces veteran headaches after brain injury

Cognitive Behavioural Therapy for Headache also shown to have positive impact on PTSD symptoms

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The first therapy to be developed specifically for post-traumatic headaches significantly reduced related disability in veterans following a traumatic brain injury (TBI), a study has revealed. 

Cognitive Behavioural Therapy for Headache (CBTH) was also shown to reduce co-occurring symptoms of post-traumatic stress disorder (PTSD) comparably to a gold-standard PTSD treatment.

Furthermore, the therapy was shown to be appealing to patients with low drop-out rates, and is easy for therapists to learn and deliver, increasing its potential to be widely used and to improve the lives of servicemen and women and veterans globally. 

CBTH, which uses cognitive behavioural therapy concepts to reduce headache disability and improve mood, includes key components such as relaxation, setting goals for activities patients want to resume, and planning for those situations.

“We are excited by this development in the treatment of post-traumatic headache, which along with TBI is poorly understood and for which treatment options are so limited,” said Dr Don McGeary, associate professor at The University of Texas Health Science Center at San Antonio (UT Health San Antonio). 

“To find the first major treatment success for post-traumatic headache, which is arguably the most debilitating symptom of TBI, and that the treatment also significantly reduces co-morbid PTSD symptoms, is a major breakthrough.”

Both TBI and PTSD are prevalent in post-9/11 military conflicts, and the two conditions commonly occur together. 

Post-traumatic headaches, or headaches that develop or worsen following a head or neck injury, become chronic and debilitating in a large percentage of those who experience a TBI such as a concussion, inhibiting their ability to engage in the activities of daily life. 

When PTSD is co-occurring, it can worsen the headaches and make them more difficult to treat.

Effective treatments exist for PTSD but not for post-traumatic headache, which along with TBI, scientists are still working to understand. 

Migraine medications commonly used to alleviate the headache pain do not relieve related disability. They also often have unwanted side effects, and their overuse can worsen headaches.

In the study, Dr McGeary and his team developed CBTH by modifying a psychotherapy for migraine headaches. They evaluated its efficacy with co-occurring post-traumatic headache and PTSD symptoms.

The study was conducted at the Polytrauma Rehabilitation Center of the South Texas Veterans Health Care System. 

Participants had clinically significant PTSD symptoms and headaches persisting more than three months following a TBI. They were randomly assigned to receive either CBTH, a leading PTSD treatment called Cognitive Processing Therapy (CPT), or the usual care provided at the VA Polytrauma Center.

At the end of treatment, researchers found that, compared to usual care, those receiving CBTH reported significant reductions in disability and in negative impact on function and quality of daily life. 

They also showed improvement in PTSD symptoms comparable to the group that received CPT. All of these treatment gains were maintained six months after treatment completion.

CPT, on the other hand, led to significant and lasting improvements in PTSD symptoms, but on its own did not improve headache disability. 

“This was a surprise,” said Dr McGeary. 

“If theories about PTSD driving post-traumatic headache are correct, you’d expect CPT to help both PTSD and headache. Our findings call that into question.”

Interestingly, CBTH did not reduce headache intensity or frequency compared to usual care. 

Dr McGeary said its dramatic reductions on negative life impact are likely due to its building patients’ confidence that they could control or manage their headaches, a concept known as “self-efficacy.” 

That sense of control was key to helping patients “get their lives back,” he said.

“If you can improve a person’s belief that they can control their headache, they function better,” Dr McGeary said. 

“That’s because, when dealing with a long-term, disabling pain condition, people make decisions about whether they’re going to actively engage in any kind of activity, especially if the activity exacerbates the pain condition. 

“They make those decisions based on their perceptions of their ability to handle their pain.”

In comparison to CPT, CBTH requires fewer and shorter therapy sessions—typically eight sessions of 30-45 minutes each. CPT typically involves 12 sessions lasting 60-90 minutes each.

CBTH requires only two hours to train clinicians to deliver the therapy, compared to CPT, a complex treatment that requires significant training and acquired skill. 

The research team now hope to broaden their study to be as representative as possible. 

Dr McGeary said: “We need more women, more racial and ethnic diversity, veterans as well as active military of different branches, with varying comorbidities, in different geographic regions attached to different hospitals and medical systems because we’re comparing to usual care.”

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