Patient views on use of emergency and alternative care services for adult epilepsy: A qualitative study

Emergency Department (ED) visits are costly to the health service and alternative care pathways may address this whilst improving outcomes. We aimed to describe decision-making and preferences of people with epilepsy (PWE) during emergency service use, and views of ED alternatives, including use of an Urgent Treatment Centre and telephone-based support from an epilepsy nurse specialist.

We conducted a community-based interview study in South East England, informed by a qualitative framework approach. 25 adults with epilepsy and 5 of their carers took part.

Participants' choice to attend ED generally corresponded with guidelines, including continuing seizures and injury. Nevertheless, over half reported unwanted or unnecessary ED attendance, mainly due to lack of access to individual patient history, a carer, or seizures occurring in a public place. Participants used proactive strategies to communicate their care needs to others, including 24 -h alarm devices and care plans. Some suggested preventative strategies including referral after ED. Participants highlighted the importance of ambulance staff in providing fast and efficient care that gives reassurance.

Improving communication and access to preventative, proactive services may facilitate better outcomes within existing care pathways. PWE felt ED alternatives were helpful in some circumstances, but Urgent Treatment Centres or epilepsy nurse specialists were not viewed as an ED replacement.