What do patients want and get from a primary care epilepsy specialist nurse service?

To assess what patients want and get from a primary care epilepsy specialist nurse service, and whether this matches their expectations and self-defined needs.

A qualitative study nested within a controlled trial to evaluate the effectiveness of a primary care epilepsy specialist nurse service in Bristol, UK. Twelve patients who had had at least one seizure in the previous year were purposely selected from the trial population for an in-depth interview. Interviews were audiotape recorded and transcribed verbatim. Transcribed text was methodically coded and themes were identified using the method of constant comparison.

Not all informants wanted to see the epilepsy nurse as they felt their epilepsy was well controlled and thus they did not see the need for care or attention. Those that chose to use the nurse service did so as they wanted information on epilepsy or better control of their seizures. The epilepsy nurse was able to provide them with the information they wanted but was not able to improve their seizure control. Informants felt able to communicate effectively with the nurse and they valued the information and advice received. They were unable to get this kind of communication and empathy from other clinicians. Informants generally praised the nurse service but were aware that it was unlikely to improve the control of their seizures. Most accepted this.

Effective communication with clinicians is as much, if not more of a priority for patients with epilepsy, than is controlling the clinical manifestations of their condition.