New report by the University of Sheffield to help NHS commissioners provide high-quality epilepsy services

  • New report by University of Sheffield is the first comprehensive evidence-based report on the impact Epilepsy Specialist Nurses have on patient care
  • Currently there are too few nurses to meet patient demand across the UK creating huge regional variation in care available
  • The report has been published by Epilepsy Action as part of their ‘epilepsy commissioning toolkit’ to help commissioners justify the investment of comprehensive epilepsy services for their regional areas

A new report from the University of Sheffield has shown the value of Epilepsy Specialist Nurses (ESNs) in caring for people living with epilepsy.

Commissioned by the charity Epilepsy Action - which provides information, advice and support for people with epilepsy - Epilepsy Specialist Nurses The Evidence: a Systematic Mapping Review looks into all the evidence of the impact ESNs have in the care of epilepsy patients.

ESPENTE report image

ESNs provide a first point of contact for specialist advice and support to help patients - and their families and carers - manage their epilepsy. They also provide specialist nursing care focusing on seizure reduction, preparation and aftercare for treatments, guide patients through the referral process to specialist clinics and management of drug doses.

Dr Jon Dickson, a GP and a Senior Clinical Lecturer at the University of Sheffield who led the research, said:
”Our study identified all the available data for the wide range of roles ESN’s play and it links together the research studies, clinical trials and anecdotal evidence to provide the first comprehensive evidence-based report on the impact ESNs have on patient care.”

A key outcome to improve quality of life for epilepsy patients is “seizure freedom” and available data suggests up to 70 per cent of people living with epilepsy could be seizure free. However, the national average in the UK is believed to be closer to 50 per cent. The 20 per cent difference between those who could be seizure free and those who actually are is known as the treatment gap.

“Currently in the UK there are large regional differences in whether patients have access to a comprehensive epilepsy service including ESN care,” added Dr Dickson. “Our report highlights the fact that for those who do not, this could be having a big negative impact.”

In areas where there is little or no ESN service provision, patients rely on appointments with consultants but patients are often on long waiting lists with little support in between appointments; slowing the progress in the management of a patient’s epilepsy.

Alan Bennett, 58, from Rotherham, was diagnosed with epilepsy at 12 years old. For the past 18 years he has now also been under the care of an ESN. He said that the specialist one-to-one care has been vital in the management of his epilepsy:

“Since 2001 I’ve had an Epilepsy Specialist Nurse and they are very useful. If I’m having problems, say with medications, I know I can ring them for advice without having to wait to see a specialist consultant at the hospital.

“I get much quicker access to information through my specialist nurse. They keep in touch making sure I have everything I need and I can always see them in person if I need to.

“They’re also really good with my wife and daughters, advising them on supporting me or helping them with treatments or any training they need to help me manage my epilepsy.

“I also have a VNS [vagus nerve stimulator] device fitted to help control my seizures so I see the nurses every few months to make sure it’s in working order. They even help with things like going on holiday. I have special requirements with insurance and going through airports because of my VNS, so they assist with all of that too. They help in such a wide variety of ways.

“Having an epilepsy specialist nurse has made me a lot wiser and I feel a lot more supported. We know a lot more about epilepsy now that we didn’t 20 years ago, and I get access to that information through the nurses, so I feel a little bit more in control of my epilepsy.”

Epilepsy Action commissioned the report from the University of Sheffield to form a key part of their ‘epilepsy commissioning toolkit’, a guide to help commissioners evaluate and commission ESN services for their regional areas.

“Clinical Commissioning Groups (CCGs) often focus their priorities on the most serious health issues, or those which affect the largest proportion of the population, but those living with epilepsy make up just one per cent of the population and they have been overlooked for many decades,” said Dr Dickson.

“National guidelines highlight the important role ESNs play in helping epilepsy patients manage their condition, but at the moment there is no coherent evidence base supporting the effectiveness of ESNs that commissioners can draw upon.

“Hopefully the publication of this research will provide a vital tool for commissioners to justify the investment in comprehensive epilepsy specialist services.”

Peri O’Connor, Healthcare Projects Coordinator at Epilepsy Action, said: “Epilepsy specialist nurses are a lifeline for many people with epilepsy and are a vital part of a good epilepsy healthcare service. However, we know there are too few nurses across the UK to meet demand and lots of people are unable to access a nurse.

“We hope that this important piece of research will help those planning local NHS epilepsy services recognise the valuable and varied role epilepsy specialist nurses can play in ensuring positive outcomes for patients. We also hope the work will encourage further research and more evidence to demonstrate how important epilepsy specialist nurses are.”

Additional information

The Epilepsy Specialist Nurses The Evidence: a Systematic Mapping Review can be found at the Epilepsy Action website here.

You can find out more about Epilepsy Action's ‘epilepsy commissioning toolkit’ for health commissioners here.

The University of Sheffield

With almost 29,000 of the brightest students from over 140 countries, learning alongside over 1,200 of the best academics from across the globe, the University of Sheffield is one of the world’s leading universities.

A member of the UK’s prestigious Russell Group of leading research-led institutions, Sheffield offers world-class teaching and research excellence across a wide range of disciplines.

Unified by the power of discovery and understanding, staff and students at the university are committed to finding new ways to transform the world we live in.

Sheffield is the only university to feature in The Sunday Times 100 Best Not-For-Profit Organisations to Work For 2018 and for the last eight years has been ranked in the top five UK universities for Student Satisfaction by Times Higher Education.

Sheffield has six Nobel Prize winners among former staff and students and its alumni go on to hold positions of great responsibility and influence all over the world, making significant contributions in their chosen fields.

Global research partners and clients include Boeing, Rolls-Royce, Unilever, AstraZeneca, Glaxo SmithKline, Siemens and Airbus, as well as many UK and overseas government agencies and charitable foundations.


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