I went with colleagues from our Citizen Engagement in Research & Implementation group Nina Fudge and Jenny Cook to the Lewisham Stroke Group this week to talk to stroke survivors and carers about the South London Stroke Register and other stroke research at King’s.
Some of the group members shared with us their experiences of participating in research in different ways: from taking part in an interview about their experience of services, to having brain scans (with digital copies to take home!). It was good to hear that their experiences had been positive, and that they’d felt they’d learned more about their own condition by taking part as well as making a contribution to research that they anticipated would help other stroke patients in future.
We presented some of the photos and handwritten pieces from our visual arts exhibition produced with our Stroke Research Patients and Family Group.
Researchers Nina and Eleanor talking with Lewisham stroke group members
Lewisham stroke group members view some of the photographs from our visual arts exhibition
Stories of the stroke event and consequences relayed through the artwork struck chords with the Lewisham stroke survivors. A common theme was that people had not always experienced the symptoms that are most widely known about (facial weakness and so on; see the FAST awareness campaign), and so they and those close to them didn’t realise that they might be having a stroke. A woman who’d had multiple mini-strokes and strokes described it as being like a sparkler crackling and burning in her head. We had an interesting discussion about how the visual arts project highlighted the invisible disabilities people can have after stroke, such as cognitive changes and fatigue, as well as more apparent problems with mobility and speech.
Thanks to the Lewisham Stroke Group for welcoming us and getting involved in the discussions. We hope to be able to include some of their experiences as the visual arts project grows and we find new audiences for the work.