Epilepsy specialist nurses needed to improve care

Author: Adrian O'Dowd
Epilepsy specialist nurses needed to improve care

Clinical Commissioning Groups (CCGs) should invest more heavily in epilepsy specialist nurses (ESNs) to improve care and help the NHS provide high quality epilepsy services, claims a new report.

The GP-led research from the University of Sheffield is described as the first comprehensive evidence-based report on the impact that ESNs can have on patient care.

Commissioned by the charity Epilepsy Action, 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.

In the UK, there are more than 600,000 people with epilepsy, but only 448 ESNs which are 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.

ESNs provide a first point of contact for specialist advice and support to help patients and their families/carers – to 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.

The report, which mapped the findings of 96 published papers on the subject including reviews of ESNs based in general practices, found there were too few nurses to meet patient demand across the UK and large regional variation in the care available.

It found there was evidence to support a greater role for the ESN in liaising with GPs.

Clinical nurse specialists in epilepsy could have direct links with primary health care teams and allowance could be made for their attendance at GP surgeries for this purpose, said the authors.

It was probable that the use of nurse specialists was the most cost-effective method of improving quality of care, they added, if these nurses could develop effective liaison with primary care teams to work across settings.

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.

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

In areas where there was little or no ESN service provision, patients relied on appointments with consultants but patients were often on long waiting lists with little support in between appointments.

“Clinical Commissioning Groups 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 1% 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: “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.”