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Patients guiding stroke research

These days there’s a consumer group to fight our cause in almost every walk of life. Now a remarkable group of people are using their own experience to help shape pioneering research into the medical treatment and rehabilitation of stroke patients.

Members of The Nottingham Stroke Consumer Group don’t hold back when it comes to offering academics their opinions. In fact they are better qualified than most to give it. They may come from different backgrounds — business, university lecturing, the civil service, nursing, manufacturing and IT — but they have one thing in common, they have all suffered a stroke.

Set up three years ago the group meets four times a year with senior academics and researchers from The University of Nottingham to discuss and evaluate the latest research and go through grant applications for funding in fine detail. Its aim is to improve and develop treatment for stroke victims by focusing research more closely on the needs of stroke victims.

After a stroke eight years ago Nottinghamshire businessman Ossie Newell spent seven weeks in hospital. He went home in a wheelchair; he couldn’t walk, write or dress himself. Looking back he describes his recovery as miraculous. He is now secretary and treasurer of The Nottingham Stroke Consumer Group and is currently organising a string of events across Nottinghamshire this year to raise awareness of what they do. He said: “We have currently an estimated 16,000 to 19,000 people living with the after effects of stroke in Nottinghamshire and I want them all to know what the group does and what it can achieve by being there to influence stroke research and therefore ultimately the treatment and rehabilitation after stroke.”

Stroke is the commonest cause of death after cancer and heart disease. 130,000 people suffer a stroke every year. A third will die; a third will make a full recovery; and third will suffer serious disability. No age group is immune — an average of six to seven children under 16 suffers a stroke each week.

Experts from The University of Nottingham are leading the way in stroke rehabilitation research. Marion Walker, a Professor in Stroke Rehabilitation at the Institute of Neuroscience, and Associate Director of the UK Stroke Research Network, says it is important to get patients fully involved as partners in stroke research and to raise the importance of participating in research to the wider public. She said: “Nottingham has a long track record of conducting high quality research that has been influential in setting clinical guidelines both in the UK and abroad. It is important that stroke patients get involved in all aspects of the stroke research process. Their contribution is invaluable. In Nottingham we are fully committed to having research survivors as partners in the development and steering of future research proposals. The Nottingham Stroke Research Consumer Group was one of the first stroke groups to establish this joint working initiative and has been the role model for the development of many other groups across the UK. The Nottingham group also have an active working relationship with the UK Stroke Research Network and provide advice on how to raise awareness of stroke and the importance of taking part in research to the wider lay public.

Other members of the group include Jenny Darby, a retired lecturer at Loughborough University. After her stroke she was allowed to carry on her work despite being unable to speak a word for the first six months of her recovery. Since her stroke she has completed a PhD.

Malcolm Jarvis was a manufacturing consultant and travelled the world. He had just published a book on teaching and lecturing in work study when he suffered a stroke. Since then he has written a book about Oxton Cricket Club where he used to be a playing member.

Norma Fenton was a civil servant in Whitehall.

Charles Russell was a charge nurse at the Queen’s Medical Centre.

Phil Noskeau worked for the Open University and was an IT trainer. He has developed the @astroke web site for the sister organisation of this group and has just been nominated by the group for a Stroke Association ‘Life After Stroke Award’.

Emma Thorne | alfa
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