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 kjenkins@standrew.co.uk
