What is the aim or your project?
My project is a research project which aims to address how adults with epilepsy make decisions about self-management of their condition. It is one of the first community based-studies about the self-management of epilepsy and is focussed on a study group of around 600 people living in North and East Yorkshire.
Why is your work important?
Around 440,000 people in the UK have epilepsy, making it the second most common neurological condition after migraine. However, epilepsy is not addressed with the same commitment by the NHS as other long-term conditions and understanding of the condition and how to manage it successfully could be greatly improved among the public and health professionals alike.
Hopefully, this research will raise the profile of the issues around treatment and risk and identify ways that information and advice can be improved to reduce the impact of this stigmatising and poorly understood condition.
What does the research involve?
The research centres on a review of the general practice clinical and drug records of the study group to identify what sort of epilepsy people have, how long they have had it and who reviews their condition.
Data is also being collected from a postal questionnaire sent to the same group. The questionnaire has been designed to provide information on the factors that influence patients’ decisions on medication and to assess knowledge of the risks associated with continued seizures (including the risk of death) and the benefits of good seizure control. It embraces the three concepts of ‘epilepsy self-management’: prescription management, seizure control and living with the condition.
What opportunities has the Leading Practice Through Research award given you?
Winning the Leading Practice Through Research award has given me protected research time. It would be impossible to deliver such a complex project and disseminate the outcomes to a wider audience as a full time GP, even in a funded research practice.
What do you hope to achieve ultimately?
Ultimately, I hope my project can increase understanding of epilepsy as a condition and contribute to the improved management and self-management of epilepsy, not only in Yorkshire but throughout the UK.
In addition, research activity takes place primarily in academic units, although it is increasing slowly in primary care. I hope that my work will raise the profile of clinical research in general practice in the area. It should help the PCT and the new local medical school appreciate that good research can take place in general practice.
07 April 2005