Developing an Epilepsy Care Plan

Significant morbidity and social problems are associated with epilepsy, including social exclusion, disability and stigma. Effective epilepsy care can reduce morbidity and improve quality of life for people with epilepsy and their families: however reports continue to criticise care standards. Current information systems for individuals are practice-based whilst care-planning requires closer involvement of people with diseases and their carers.A mixed-methods study was carried out aimed at developing a patient-centred care plan to improve health care services for people with epilepsy by reviewing relevant research and policy, providing an important conduit for the views of all stakeholders, including the patient. A review on the development of care plans in epilepsy was completed and eight existing epilepsy care plans were reviewed. A series of semi-structured interview and focus groups were then carried out with 20 individuals with epilepsy, 10 family carers and 7 health care professionals. On the basis of the review and information gathered in the interviews and focus groups, a series of key themes were identified and a first-draft care-plan, extensively covering all of these areas was constructed. The first extensive draft of the care plan was reviewed at a meeting between members of Epilepsy Action and university researchers. A second draft of the care plan was then published online for consultation and comment. A total of 40 responses to the online care plan were received, 8 from people with epilepsy and 32 from epilepsy professionals. The importance of each of the themes covered by the care plan was rated and additional comments from respondents on the relevance of these were collated. Work then concentrated upon translating these varying viewpoints into a final document.The resulting care plan is a patient-held document, intended to serve as a flexible means of engagement for people with epilepsy and their carers. Taking on board the tension between having a short and user-friendly document with essential information presented “upfront”, and acknowledging a holistic approach to disease management which incorporates wider information needs, the plan is in two parts. Part One includes essential personalisable information and Part Two comprises of wider information on health and lifestyle with a list of relevant web links for further exploration.