Patient reported experience of a seizure care pathway: development and validation of a new measure

North West CoastNeurological
Start Date: 1 Mar 2015


Epilepsy is one of the most common neurological conditions to present to the emergency department. It is important that these patients receive optimal management in the Emergency Department (ED) but also a rapid access follow-up in specialist services on discharge in order to make changes that could reduce readmissions, reattendances and improve quality of life. Socio-economic circumstances are associated with a higher risk of seizures, and can be barriers to accessing specialist care that will could not only reduce unnecessary ED attendances but also improve patient quality of life and other heath outcomes.

Who was involved?

Service users were involved in the project management team for the CAPS project and played an active part in the research itself. There was also support from local and national charities. Some participants were selected for qualitative interviews based on age, gender, sociodemographic background and educational attainment to explore a wide range of backgrounds, with 48% of participants in the highest 20% of social deprivation.

What did CLAHRC NWC do?

In Cheshire and Mersey a seizure care pathway has been developed in collaboration with a specialist neurology hospital; The Walton Centre NHS Foundation Trust, and the local strategic clinical network. The care pathway was designed to support clinical management of seizure patients on initial presentation to the ED, as well as rapid access to follow-up services on discharge, with an aim to improve patient outcomes and experience. As well as measuring patient outcomes through surveys and questionnaires, patients were also interviewed about their experience of the intervention. The following questions were asked:

  • How was your experience of the seizure care you received when you went to the emergency department?
  • Was your experience any different to previous experiences when you have had a seizure? 
  • Are there any ways that you think the service could be improved?

What we found and what does this mean?

The project has highlighted the importance of communication and continuity of care across service providers. Patients told us that they felt ‘abandoned’ by the service once discharged from ED, that they didn’t know who to turn to for help or reassurance, and that communication across the services was poor. They suggested improvements on:

  • The lines of communication between appointments to improve reassurance
  • Communications with the GP so that they had someone to turn to for support between appointments
  • Discharge support information so that patients know what to expect to happen next with regards to their ongoing care. There is evidently scope for improvement of the seizure care pathway as it stands which will ultimately improve patient experience and outcomes.
Prof Tony Marson