In three focus group discussions, 18 women with epilepsy were asked about their experiences of and satisfaction with care and treatment at both primary and secondary care, and for views on how epilepsy services might be improved. A fourth focus group was held with six epilepsy nurse specialists to seek their opinions on the service needs of women with epilepsy. Criticisms of services identified by both the women and nurses typically concerned four areas of care; organisation of services, technical competence, information provision and interpersonal skills, and health outcomes. Specific criticisms in each area included: lack of continuity of care and shared care; poor provision of information about side-effects of antiepileptic drugs (AEDs) and their effect on the contraceptive pill; and apparently haphazard prescribing of AEDs with consequent serious side-effects. Recommendations for improvements in services and treatment for people with epilepsy are suggested.
Copyright 1999 British Epilepsy Association.