Malmesbury teenager goes without specialist care in epilepsy battle (From Wilts and Gloucestershire Standard)

A schoolgirl at Malmesbury Secondary School has spoken of her battle with epilepsy following a report by the Royal College of Paediatrics and Child Health showing care guidelines by the National Institute for Clinical Excellence are not being met

9:14am Thursday 27th September 2012 in News By Ian Craig

A TEENAGE epilepsy sufferer from Malmesbury has spoken of her struggle with the illness while going without specialist treatment for two years.

Tamara Tanner, 15, was diagnosed with the illness two years ago but has received no specialist treatment, despite guidelines from the National Institute for Clinical Excellence (NICE) that all children with epilepsy must have access to a specialist nurse.

Tamara’s mum, Justine Sparrowhawk, said she had no idea her daughter was entitled to the care until a report by the Royal College of Paediatrics and Child Health was published this week showing only 46 per cent of epileptic children are receiving the care they are entitled to.

"We’ve only got a consultant who we see every six months but we haven’t been told very much," she said.

"We didn’t even know we were supposed to have a specialist nurse.

"We really feel like we’ve been kept in the dark as we’ve been given very little support."

Tamara, a pupil at Malmesbury Secondary School, said she believed not having contact with a specialist nurse had severely affected how she was able to deal with her condition.

"I don’t really know anything about epilepsy and I think I would have benefited from being told how to deal with it," she said. "Maybe I wouldn’t be so ashamed to say I have epilepsy at school."

She added she was unable to take part in a lot of activities at school, and had even had to be taken out of a number of classes.

Simon Wigglesworth, deputy chief executive of Epilepsy Action, a charity working to improve care for sufferers of the disease, said it was "extremely disappointing" that so many children were going without specialist treatment.

"It’s unacceptable that more than half of children and young people with epilepsy have not had the input of an epilepsy specialist nurse," he said.

A spokesman from NHS Wiltshire said they were unable to comment on an individual case, but the treatment of every patient with epilepsy is managed through their GP with support from a specialist neurologist.