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Couple's joy at new epilepsy nurse

PUBLISHED: 15:38 11 December 2008 | UPDATED: 12:31 03 July 2010

New epilepsy nurse Helen Paynter

New epilepsy nurse Helen Paynter

A BRADWELL couple who have campaigned for improved support and care in epilepsy following the tragic death of their daughter were overjoyed this week when a specialist nurse was finally appointed.

A BRADWELL couple who have campaigned for improved support and care in epilepsy following the tragic death of their daughter were overjoyed this week when a specialist nurse was finally appointed.

Denise and David Brown, of Cherry Close, began tirelessly petitioning for a specialist paediatric epilepsy nurse to work out of the James Paget University Hospital following the death of their daughter Eve three years ago.

Eve died following an unexpected seizure while she was at university in Stoke on Trent - she was just 21.

Although Eve started suffering epileptic seizure in her early teens her family never knew the condition could kill her.

Since then the couple have been campaigning to raise awareness of Sudep (sudden unexpected death in epilepsy).

And after more than a year of campaigning the couple, who have another daughter Carly, 28, were delighted to see a specialist nurse appointed by the local primary care trust, NHS Great Yarmouth and Waveney.

Helen Paynter has been given a base both at the hospital and the Central Surgery in Gorleston and will be providing parents and carers with extra support, giving them direct advice and help.

Mrs Brown, 52, said: “Parents need to realise the seriousness of epilepsy. We did not know epilepsy could kill. We had done a lot of research into it on the internet and yet had no idea of Sudep.

“Helen will be an essential link who parents can ring up if they have any concerns, and, equally importantly, she will have a direct contact with the hospital neurologist. Many people with epilepsy are under their GP who are not experts about the condition.”

She said patients with other conditions, such as diabetes, were told about possible serious effects when they were diagnosed. The same direct approach needed to be taken with epilepsy to maximise the chance of people taking their medication properly and managing their lifestyle.

Eve was a third year student and had been studying in the library 70 hours a week. They wondered whether becoming over-tired may have contributed to her seizure.

She said: “About 1,000 people die from Sudep every year and it is thought 400 of those deaths might be preventable with the right care and support. It is too late for our daughter but a lot of other families desperately need the help of a specialist nurse.”

Miss Paynter said her role had been designed to give parents, carers and their children extra support.

She said: “I will be working closely with the patients and their families to build up a detailed knowledge of individual cases so that I can offer help and advice on how best to manage what is an incredibly complex condition.

“I hope that my appointment will make a real difference to the quality of life of children with epilepsy while providing both them and their families with extra reassurance and help.”

Dr Stephen Nirmal, consultant paediatrician at the JPH, said Helen's appointment would greatly improve the overall care of children with epilepsy.

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