ESPENTE (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
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, but it is estimated there are only between 250 and 400 ESNs. This is for both adults and children. 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 due to the people who decide where money should be spent in the NHS (commissioners). They do not seem to think that ESNS are a high priority. They have not seen enough evidence that proves how effective and important ESNs are.
Epilepsy Action is proud to be funding a team at Sheffield University, to carry out the ESPENTE research study.
'The ESPENTE study will identify the evidence-base for epilepsy specialist nurses. Good quality evidence of effectiveness and cost-effectiveness will strengthen the case for commissioning of epilepsy nurses. Identification of evidence gaps will act as an agenda and a stimulus to generate evidence to demonstrate that epilepsy nurses are an essential part of high quality epilepsy services.'
The researchers will carry out a systematic mapping review in parallel with a stakeholder group. They will provide a definitive paper on the type of evidence, the quality of evidence and the evidence gaps for ESNs.
We hope that this will act as an agenda for further research and a framework for commissioners to consider the current evidence when planning their local services.
The project team
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
A stakeholder group meeting was held in April 2018 in Sheffield. The aim was to refine the scope of the project.
This meeting will be attended by stakeholders including epilepsy specialist nurses, neurologists, general physicians, GPs, commissioners, hospital managers, people with epilepsy and carers of people with epilepsy.