Lay Conference Report

The Nottingham Stroke Research Consumer Group (NSRCG) was formed in November 2004 as an independent partnership organisation of stroke researchers from the University of Nottingham and stroke survivors and their carers. There has been a small core group of people involved over the years who have been principally engaged in the review of stroke research proposals, serving on trial steering groups, or participating in trials themselves.

The impetus for the group came from the University's Stroke Research Strategy Group who had been aware for some time that research conducted locally had been remiss in their ability to involve stroke patients and their carers in the research process. They invited Ossie Newell who was chairman of the then Nottingham Stroke Services Partnership Action Group, a patient led group, to help set up this organisation.

The group's philosophy as a partnership group is:

Patient Focused
True Partners

On the 29th July, 2013 the NSRCG in collaboration with colleagues from the Stroke Rehabilitation theme at the University of Nottingham held a Stroke Lay Conference at the East Midlands Conference Centre. The conference was aimed at stroke survivors, carers and 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 MP, Lillian Greenwood, who was interested to hear about recent advances in stroke research. Messages were also received from Jeremy Hunt, Secretary of State for Health and local MP Graham Allen who were unable to attend but expressed their support. The keynote speaker at the conference was Olympic Cycling Medallist, Bryan Steel, who inspired delegates by describing how methods used in coaching the Olympic and Paralympic Cycling Teams might be applied to stroke rehabilitation. The presentation was very well received and many delegates took the opportunity over lunch to talk to Bryan further. Ossie Newell's presentation introduced the University of Nottingham's IMPACT campaign and its relationship with the NSRCG. Further information on the IMPACT campaign and Life Cycle 3 was provided by Melissa Wadams from the Campaign and Alumni Relations office. An overview of past, current and future Stroke Rehabilitation research was provided by Professor Marion Walker who took part in the Life Cycle 3 event. In this event she cycled over 1,100 miles to help raise a projected £300,000 for Stroke Rehabilitation research. Two examples of stroke research carried out at the university were presented by Dr Shirley Thomas and Professor Pip Logan. Shirley described the CALM (communication and low mood) study and gave an overview of their findings. Pip presented the findings of the GOTH (getting out of the house) study. Details of all of the presentations can be found on the website with copies of the presenter's slides.

The afternoon session concluded with delegates splitting into eight discussion groups. The groups were a mixture of stroke survivors, carers, professionals and interested others. Each group was facilitated by a stroke researcher. The groups were given three topic areas: in hospital; at home and transitions. The groups were asked to discuss and select what they considered to be the key topics for stroke rehabilitation research in these given areas. The groups then fed the information back to be collated allowing for a top 10 research topics to be identified under each heading. 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.

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 the 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, their carers and health care professionals. One of the delegates, Carol McGriskin of Ravenshead, whose husband Peter had a stroke in June 2012, said "for a carer it can be tough to stay positive continuously, but events like the stroke lay conference have helped to inform, inspire and revitalise. The event exceeded all of our expectations."

When asked if they would like to attend another event of this kind, 97% of delegates said YES!