Stroke Lay Conference
On 1st September 2014 atastroke in collaboration with colleagues from the Stroke Rehabilitation theme at the University of Nottingham held a Stroke Lay Conference at the National College, Nottingham. The conference was aimed at stroke survivors and carers / family members affected by stroke.
The event was designed to provide an update on local stroke rehabilitation research, to explain what is currently happening and to introduce exciting new initiatives. Ossie Newell, MBE, Stroke Ambassador, and Marion Walker, MBE, Professor of Stroke Rehabilitation at the University, explained, "We were keen to provide patients and families with an opportunity to get involved by sharing their ideas and suggestions to help feed into and shape future research."
The conference was attended by local stroke survivors and carers and attracted nearly 100 delegates.
Ossie Newell opened the conference, giving an introduction into Stroke Research and atastroke, the Nottingham Stroke Research Partnership Group. Professor Marion Walker gave an overview of new stroke research studies in development and appealed for carers of stroke survivors to participate in forthcoming focus groups.
Professional researchers joined with stroke survivors to present their experiences of patient engagement in current stroke rehabilitation research studies. These covered:
- TICH2 trial: reducing bleed – Dr Niki Sprigg & Christine Knott CBE, and Regaining confidence after stroke – Jane Horne & Frances Cameron
- Stroke survivors Martin Coult (web designer) and Fred Higton (cartoonist), then gave their personal experiences of stroke research engagement.
The afternoon concluded with delegates splitting into groups for 'meet the researcher' facilitated discussions. The groups were a mixture of stroke survivors and carers and each group was facilitated by a stroke researcher. Delegates were offered 3 research topics out of nine subjects which were identified as important areas at the stroke lay conference in 2013. The groups were asked to discuss and select what they considered to be the key issues for stroke rehabilitation research in these given areas. The researchers then fed back the key points raised by stroke survivors and carers. It is hoped that this information will assist with the decision making on where future research money should be invested. These discussions were a direct example of integrated lay involvement in shaping the future of stroke rehabilitation research.
Topics covered vision problems, mentoring and motivation, returning to work, stroke clubs, fatigue, falls, acute care, regaining confidence after stroke and electrical stimulation therapy to improve upper arm function.
The delegates at the conference were asked to complete evaluation forms to provide feedback for the conference organisers. The overwhelming feeling was that the conference was a huge success with very positive comments made and some practical ideas on how specific areas might be improved in the future. A selection of the answers to questions on the evaluation form are shown in the following figures (Fig 1 to 5). The graph shows the results of the satisfaction section of the evaluation questionnaire.
The whole experience was seen as a very positive one by stroke survivors and their carers. One of the delegates said: "Thanks for the conference today. It was brilliant. I really enjoyed it and I know both my mum and dad got a lot out of it. Just hearing about the experiences of other patients and carers gave us a real sense of perspective."
When asked if they would like to attend another event of this kind, 94% of delegates said YES!
The Lay Conference is storified here.