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Access to epilepsy specialist nurses 'remains patchy', warns audit

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The number of nurses specialising in the care of epilepsy in children has increased over the last two years, but their distribution remains patchy across the country, according to a national audit.

A “lack of consistently good care persists”, with gaps and variations across geographical regions, despite an increase in both children’s epilepsy specialist nurses and specialist epilepsy clinics, it warned.

Findings from the Epilepsy12 national audit of epilepsy care for children and young people, published yesterday, revealed how care trends have changed since it was first conducted in 2012.

“All children diagnosed with epilepsy should have access to a children’s epilepsy specialist nurse”

Fiona Smith

Led by the Royal College of Paediatrics and Child Health, the audit examined the change in provision of healthcare for children and young people with suspected epileptic seizures against 12 indicators.

It found more than two thirds, 68%, of units had a local children’s epilepsy specialist nurse, compared to 53% in the first audit.

There has also been a significant expansion in epilepsy clinics, with 66% reporting the availability of a weekly clinic, compared to 58% in the previous audit.

However, the audit report recommended that the 60 remaining services without an epilepsy specialist nurse should “urgently create new posts to provide essential care”. It also called for better access to consultants and paediatric neurologists.

Sarah Hedges, from Dorchester, whose eight-year-old daughter Eleanor was diagnosed with epilepsy when she was one called for more paediatric epilepsy specialist nurses across the UK.

The family have access to an epilepsy specialist nurse, but not locally, meaning they must travel for two hours to see her.

Ms Hedges said: “When we have questions or concerns about Eleanor, her seizures, or medication we contact our nurse by telephone or email. Our nurse is a great help but if we needed to see her we would have to travel to Southampton. This can be difficult, especially as Eleanor’s seizures are unpredictable.

“We really value the advice and support our nurse gives us but it would be so much easier to have someone to turn to locally,” she said. “We really need the support of specialist health professionals close to home who understand her epilepsy and the impact it has on her life.”

“What’s crucial now is to ensure best practice is more widely implemented”

Colin Dunkley

Dr Colin Dunkley, paediatrician and project lead for the Epilepsy12 Audit, said: “There have been welcome improvements in epilepsy care. But we cannot become complacent.

“What’s crucial now is to ensure best practice is more widely implemented so that all children and young people can benefit from recommended care,” he said.

The report also included the results of a survey of parents of over 2,000 young patients with epilepsy, as well as the children themselves. It found 88% were satisfied with the overall care they received from their epilepsy service.

Fiona Smith, the Royal College of Nursing’s professional lead for children and young people’s nursing, said specialist nurses were “key to providing the best possible care to children” with epilepsy.

Royal College of Nursing

Fiona Smith

“All children diagnosed with epilepsy should have access to a children’s epilepsy specialist nurse. However, provision remains patchy and there are still too many areas of the country without any of these specialist nurses available.

“These specialist nurses bring the required skills and knowledge to care planning, patient participation, liaison with school and respite care, and rescue medication training,” she said.

“Without these nurses, children with epilepsy are not receiving essential care so those services that still don’t have a specialist nurse in place must make urgent efforts to redress the situation,” she added.

The audit was commissioned by the Healthcare Quality Improvement Partnership and Healthcare Improvement Scotland.

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Readers' comments (1)

  • This issue has been well known at least since I started in post as an epilepsy specialist nurse in 1999. In 15 years various reports have noted the patchy distribution of nurses for the most common serious neurological condition that affects almost 1% of the population. If you have diabetes, asthma, cancer etc specialist nurses are a given. People with epilepsy are still stigmatised and I doubt we will see any change in the next 15 years despite this audit, unless CCG's and Trusts are directed to act on the findings. Contact with central government however always advises that local Trusts have the job of allocating funds appropriately in their local areas. So how can they explain the ongoing lack of response to reports which appear at regular intervals staing the lack of services for people with epilepsy?

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