Supporting patients and families

Helping people with brain injury to help themselves

People with brain injuries face a series of physical, psychological and emotional challenges that can seem insurmountable. But thanks to supporters like you, patients at King's are embracing an innovative new self-management programme that's helping more people reach their rehab goals.

King’s Brain Injuries Services Team collaborated with Bridges Self-Management social enterprise and spoke to former stroke and traumatic brain injuries patients. The patients documented their recovery experience and shared practical ideas and tips that had helped them. These were used to develop an interactive resources book for new patients which helps people set their own personal goals and chart their progress.

Setting meaningful goals

So how exactly does the programme work? 'It's based around the principles of self-efficacy,' explains John Ling, clinical nurse specialist from King's brain injury services, who has played a key role throughout the project. 'Put simply, we think it’s important for people recovering from brain injuries to develop the skills to self-manage aspects of their recovery and rehabilitation. They can do this by setting goals that are meaningful to them, achieving them at their own pace and reflecting on how they’ve done. Learning how other people with brain injury have dealt with their challenges really helps with this process.'

During the original pilot project, people who had experienced brain injury contributed stories, ideas and tips on how they'd coped on the road to recovery. These were then used to develop an interactive resources book for new patients, as well as a companion book to help family and friends.

'These books are tools to help people set their own personal goals and then work out how they're going to reach them – and chart their progress – in a methodical, step-by-step way,' John explains. 'If someone eventually wants to join a gym, for example, their goal for week one might simply be to find a suitable gym in their area and get the contact details.'

Pre-empting problems

Will and his wife Rose (pictured above) were happy to contribute to the friends and family booklet. Will was 73, but still very independent and working as a teacher and linguist, when he had an accident that left him with traumatic brain injury and speech problems. Through sharing their story, the couple have been able to show how pre-empting problems, and finding ways round them, is so important.

'Going into a shop, I feel like I have to explain because of Will's speech, and I find people are a lot more receptive if they know,' says Rose. 'I have actually seen people gasp because sometimes, if he really wants to put his point across, he sounds aggressive. People don't know. You can see them recoiling. But once you explain, it's a completely different thing.'

Reaching all brain injury patients

People who have suffered a serious brain injury often spend a long period in hospital, including a spell in a post-surgery rehab unit before going home. However, others who haven't required such complex treatment tend to be discharged more quickly, but still experience debilitating problems – ranging from headaches to mood swings – at home. And it's this group in particular who will benefit from the Bridges self-management project.

'In the past, these people have been quite poorly catered-for in terms of support,' John explains. 'They might come to my clinic every 12 weeks, for example – but the rest of the time, they're largely coping alone. So by seeing what's worked for patients in the past, they can develop the necessary knowledge and skills to help themselves.'

Getting everyone on board

Anyone recovering from brain injury is likely to come into contact with a range of health professionals from day one – such as doctors, nurses, occupational therapists, physiotherapists and psychologists.

'This is complex,' says John. 'It's about trying to change the mindset of people who are supporting those with brain injuries to be a little less directive, and a bit more curious about what strengths the person brings to that situation.

'That's why it's vital that as many key workers as possible have been trained up to work in this way. And as staff move on, their replacements need to be brought up to speed. So this second wave of training and refresher workshops, made possible by the charity funding, has been incredibly important.'

Self-efficacy in action

The project is still in its early stages – but the results so far look promising. 'There's no quick fix but we're learning all the time,' John explains. 'Anything that allows us to offer some resources to this relatively overlooked group is a huge positive.'

An example of the project at work? 'I recently gave the resource book to a patient who'd been in hospital for a couple of weeks for a major brain operation during which he'd had part of his skull removed then put back in again,' says John. 'Not long afterwards, I had to call him on his mobile and he was at Bluewater shopping centre – which is one of the last places you'd expect to find someone after brain surgery.

'He explained he'd worked it all out in advance with his partner. He'd made sure he'd had a quiet night beforehand, had a good rest in the morning and planned how he was going to get there and back. And that's really the programme in a nutshell: finding goals that are meaningful to each individual, and working towards them, one step at a time.'

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