Published: March 27 2018
Last updated: September 28 2022

ESPENTE - overview

Epilepsy Specialist Nurses – The Evidence

At Epilepsy Action, we know that epilepsy specialist nurses (ESNs) are brilliant. We hear from people with epilepsy on a daily basis how invaluable ESNs are in their treatment and care.

“Without doubt specialist epilepsy nurses are vital in supporting us to live with our epilepsy. Before I was given a nurse I was isolated and frightened, but now I’m being expertly looked after in between consultant appointments.”   Deb Grant

Most epilepsy specialists believe that for epilepsy services to be effective, ESNs are an essential part of the team.

“The ESN improves quality of care through easy access to expert authoritative advice, information and counselling.”    Consultant

The problem

We know that there are nowhere near enough ESNs to provide a service for everyone with epilepsy.

In the UK, there are over 600,000 people with epilepsy, and Epilepsy Action is only aware of 448 ESNs. This is for adults, children and people with learning disabilities. In comparison, there are currently 245 multiple sclerosis (MS) nurses in the UK for a population of 100,000 people with MS.

One of the reasons for the lack of nurses may be because the people who decide where money should be spent in the NHS do not seem to think that epilepsy care or ESNS are a high priority. They have not seen enough evidence that proves how effective and important ESNs are.

A solution

Epilepsy Action commissioned researchers at the University of Sheffield to research the role of ESNs. To do this, they looked at all the evidence that has been published so far and carried out a mapping review. The researchers looked at two things: all of the roles ESNs fulfil and the quality of the evidence. They then produced a diagram (or map) of this information.

We hope that the information will now help those planning local NHS epilepsy services. We also hope the work will encourage further research and more evidence to demonstrate how important ESNs are.

Read the report

Review the map

You can also use the tabs near the top of this page to see the ESPENTE report and map.

The project team

Sheffield University team
  • Dr Jon Dickson, Senior Clinical Lecturer at the University of Sheffield, GP and Clinical Assistant in Neurology
  • Dr Andrew Booth, Reader at the University of Sheffield, expert in systematic review, evidence synthesis, evidence based practice, and knowledge translation
  • Prof Markus Reuber, consultant neurologist, epilepsy specialist and Professor of Neurology
  • Dr Richard Grunewald, consultant neurologist and Clinical Director of Neurology in Sheffield
  • Carina Mack, Neurology Manager and former epilepsy specialist nurse
  • Fiona Campbell, Research Fellow
Epilepsy Action team
  • Angie Pullen, Epilepsy Services Manager
  • Amanda Stoneman, Research and Evaluation Officer
  • Peri O’Connor, Healthcare Projects Coordinator