What people with epilepsy want from a hospital clinic

A questionnaire was sent to 511 patients with epilepsy who were being reviewed at the clinics of two consultant neurologists. The questionnaire asked 19 questions about seizure type and how the diagnosis was given. It also asked how much information was given about the disease and advice about living with it. There were also questions about counselling and preference for hospital or community care. Over 96% returned the questionnaire. About one third said they were not told what epilepsy was, over 90% wanted more information about the disease, and about three quarters felt they had not been given enough information about the side-effects of antiepileptic drugs. Over 60% wanted to talk to someone other than a consultant about epilepsy, the most frequent person requested being a specialist nurse. Despite this, three quarters wanted to continue to attend the hospital clinic and 89% were generally satisfied with their hospital management. This survey has highlighted a number of shortcomings in the structure of our clinics. It should be possible to correct them by providing more structured information and having a nurse specialist available.