The epilepsy nurse specialist at a tertiary care hospital—improving the interface between primary and tertiary care

Abstract

Recent literature suggests that access to an epilepsy nurse specialist (ENS) may help improve patients understanding and management of their condition and in doing so may decrease morbidity and mortality. This paper describes the role of the ENS at a large tertiary referral epilepsy centre, the National Hospital for Neurology and Neurosurgery (NHNN) in supporting patients with refractory epilepsy in the hospital and community. Approximately 300 patients were referred to the ENS in the first 6 months of the service. A questionnaire was posted to 193 patients, 69% responded. Most patients had multiple seizures each month, took polytherapy, underwent frequent antiepileptic drug (AED) dose changes and often experienced drug side effects. Sixty percent of patients contacted the ENS for urgent medical advice. Important aspects of the service were access by telephone to medication advice, information, support and adequate time to discuss issues. The ENS improved continuity of, and accessibility to, care for patients, has become a key member of the multidisciplinary epilepsy team and has freed up scarce medical time.