We are the experts on how our conditions affect us

One in 50 people in Bristol, North Somerset and South Gloucestershire live with the long-term effects of stroke.

Chris Priestman, Stephen Hill and Claire Angell are three stroke survivors from Bristol Health Partners’ Stroke Health Integration Team (HIT). Over several years, they have played a key role in influencing how local stroke services could better benefit patients: the proposed improvements were announced in February.

Here they reflect on why they got involved, what it means to them, and how others with lived experience of a health condition can make a difference too.

Stephen, Stroke HIT lead for public involvement in health research:

“I know from my own experience of stroke, and through speaking with many other stroke survivors, that far too many local people have had varying experiences of services depending on where and when their stroke hit.

“These disparities motivated me to try and change the situation. I’m really pleased that the changes that have been agreed will align all local services to give everyone equitable access to specialist care at each stage of stroke – from initial treatment to ongoing therapy – enabling more people to survive and live independently.”

Chris, Stroke HIT lead for public involvement in health services:

“Having a stroke is a life changing event. The initial treatment you receive is the very start of a long journey of rehabilitation, therapy and adjustment.

“That’s why it is so important when new services are developed that they take on board both the positive and negative personal experiences of local people, alongside the expertise of local clinicians. Our contribution has helped ensure that the best specialist support is available for everyone in our area at each stage of that journey.”

Claire, Chair of Stroke HIT Service User Group:

“Two years ago, the Stroke HIT brought together 13 stroke survivors and carers, with representatives from Bristol After Stroke, Stroke Association and Healthwatch, to create a Service User Group. The Group formally linked the Stroke HIT with the Bristol, North Somerset and South Gloucestershire Stroke Programme Board, which was responsible for making decisions about stroke services.

“The Group gave people with direct experience of stroke and stroke services a means to have their voices heard by decision makers in our health and care system. It has directly helped co-design the improved stroke pathway and the public consultation process, as well as help shape research and service evaluation projects.

“As Chair of the Service User Group, I attended the Stroke Programme Board and presented at key governance reviews to the Healthier Together Partnership Board and CCG Governing Body to help ensure the programme gained the support to continue to progress.

“My experience of the Stroke Programme Board has always been a positive one. I’ve felt included and have been encouraged to speak up. Bristol Health Partners has been intuitive about offering practical solutions to the accessibility and communication difficulties that I and other Service User Group members encountered, and the value given to stroke survivors’ opinions and experiences was key to building our confidence in the engagement process.”

Chris:

“I’m still affected by mild aphasia and some mental deficit. I joined the Stroke HIT and the Stroke Programme Board to bring attention to the plight of people who suffer more serious communication problems, and to regain some of my own confidence to speak up in a group.

“The Stroke HIT leadership team has been so supportive to me. People affected by stroke have many different deficits, both physical and mental, so those who are unaffected need to understand and work positively with those circumstances. Not only are they calling on your knowledge and experiences to improve things, but they are also encouraging you to overcome your uncertainty – or at least that’s what I’ve found.”

Stephen:

“As well as being a member of the Stroke Programme Board, I took an active role in the public consultation by leading focus groups of survivors who had had strokes recently and their carers. I was also interviewed for radio and television when the public consultation was happening and when final approval of the new services was announced.

“The importance of giving full recognition to the value of evidence from people with lived experience has led to a national statement about Shared Commitment to Public Involvement, which will be published in March by the National Institute for Health Research and the Health Research Agency.As a member of the committee which drafted and promoted the National Commitment, and through serving on National Institute for Health and Care Excellence (NICE) Guidelines Committees, I have seen the power of lived experience to inform clinical practice and research at national level. I’m very proud of the positive way in which the new Stroke Programme has been strengthened by our involvement as public contributors.”

Chris:

“My own long road of post-stroke rehab taught me to draw on my inner determination just to keep on going. I’d say that’s the number one quality for anyone thinking of making a public contribution. It’s easy to be put off by the formality that surrounds meetings and the like, but if you believe things can be improved, and accept that you aren’t likely to benefit from these improvements yourself, it’s crucial to get your voice heard in the places where decisions are made.

“The model of Patient and Public Involvement used in the Stroke HIT and the Stroke Programme Board has really worked. The voices of my fellow reps have been heard and genuinely incorporated in the region’s health system, especially as the two organisations have complimented each other. I am now much more optimistic than I was before I had the chance to get involved. If you have had a stroke and think you could use your experience to benefit others, I urge you to consider becoming a patient rep.”

Claire:

“I have gained so much from being involved in improving our local stroke services and I would encourage anyone with lived experience to get involved in programmes that aim to improve health and care services in the future. It’s important that the patient perspective is always put at the heart of any changes being considered, because we are the experts on how our conditions affect us.

“I’m so proud that, through true joint working, we’ve achieved something that will directly and tangibly benefit thousands of people in our area. But of course, this is really only the end of the beginning: putting the proposed changes into practice starts now. I’m now looking forward to seeing our work come to fruition and seeing real change in stroke care. It is going to be important for those of us with lived experience to be at the centre of evaluating how the service changes are being introduced and managed in practice, and as a Service User Group we will be getting more involved in stroke research which will inevitably help patients far into the future.”

Get involved

If you’re a stroke survivor or a carer, and would like to offer your lived experience to support Bristol Health Partners Stroke HIT, please contact [email protected]

If you have lived experience of a health condition and want to improve health and care for others with related conditions, please contact People in Health West of England on [email protected]