Qualitative insights into the role and practice of Epilepsy Specialist Nurses in England: a focus group study

Abstract

This article is a report of a study that aimed to explore Epilepsy Specialist Nurses' perceptions of their professional role and the factors that may affect their practice. Previous studies have demonstrated high patient satisfaction with the Epilepsy Specialist Nurse. Although UK national guidelines recommend that all individuals with epilepsy should have access to an epilepsy specialist nurse, many National Health Service trusts disregard these guidelines. The need to introduce cost efficiencies in the National Health Service means that the future of some epilepsy specialist nurses is threatened. A qualitative study using focus groups was designed to elicit a rich understanding of the epilepsy specialist nurse role and its current challenges. Three focus groups were held with a total of 19 participants in the summer of 2009. Data were subjected to thematic framework analysis. The work was underpinned by high commitment to nursing values, which helped to define the role. Epilepsy specialist nurses were often the sole providers of expert and personalized care to meet patients' complex needs. Policy and financially driven changes undermined professional identity and led to service diminution. . The provision of epilepsy care in England remains variable and access to epilepsy specialist nurses is inequitable. Trusts are being seduced by the cost savings of reducing a specialist service but consequent gaps in service may drive up costs elsewhere. The challenge is for epilepsy specialist nurses to demonstrate their unique place in enhancing patient care and in improving health and well-being.