Some people with chronic epilepsy (PWE) make clinically unnecessary, and potentially avoidable, visits to hospital emergency departments. Whilst expensive, it is not known how to reduce them. We recently conducted the first trial of an epilepsy-nurse specialist intervention which aimed to optimise self-management skills in PWE attending emergency departments and advise them on appropriate emergency services use. Based on in-depth semi-structured interviews, we here report the perceived support needs of patients who have attended a emergency department for epilepsy and the benefits of the intervention which they identified. Nested qualitative study. After receiving the intervention, 20 participants were invited to interview. They described their experience of the intervention, to what extent they valued it and its benefits and limitations. Interviews were audio-recorded, transcribed and thematically analysed. Most valued the additional support. Those who previously used emergency departments most perceived greatest benefit. Participants felt it redressed limitations to usual care, including providing information about living with epilepsy, and an opportunity to discuss feelings about epilepsy. Perceived benefits included improvements in emotional well-being, confidence dealing with seizures and medication adherence. The intervention was acceptable to patients. People with epilepsy who had attended a emergency department on more than one occasion perceived most benefit. This suggests they want additional care. Some perceived benefits in domains possibly causally related to emergency department use. This suggests the intervention, with optimisation, may have the components to reduce emergency department visits. Our results provide insights into how to support PWE who attend emergency departments and how needs differ amongst this group.
