Despair over sick boy's treatment

THE mother of 7-year-old epileptic boy Jamie Hill says she is hitting her head against a brick wall as she tries to secure treatment for his rapidly deteriorating condition - even though she is prepared to go private and pay.

Sarah Gabb, 31, of Caxton Road on Hoddesdon's 100 Acre estate, said Jamie's difficult-to-control epilepsy has worsened so much in the last few months that the family sought private treatment at London's world-renowned Great Ormond Street Hospital - only to be told the hospital could not treat Jamie privately because he is an NHS patient.

"My son has been having fits every week now," said Mrs Gabb. "He's on 13 tablets a day, which is the limit for his weight. He's not leading a normal life"

She said Jamie was "losing co-ordination" and tripping over and falling down the stairs more often.

"He can't cope mentally with it. This is why we wanted to go to Great Ormond Street Hospital. We wanted to do things privately to speed it up."

Mrs Hill said the family were banking on a treatment called vagus nerve stimulation (VNS) therapy, in which a pacemaker would be implanted in Jamie's shoulder.

He would wear a receiver hidden in a watch and whenever he felt a seizure coming on, he would wave the receiver/watch over the pacemaker to activate it.

The pacemaker would stimulate the nerves in his brain in order to ward off the fit.

However, VNS therapy is expensive at around £7,000, and Mrs Gabb believes hospitals are reluctant to prescribe the treatment because of the cost, although in this instance the family are prepared to pay for it.

Mrs Gabb- who said she had a referral letter from the family doctor - said: "I've been trying to push things through, but no one is doing anything. We're at a brick wall now and nothing's been done.

"Anything that can help him lead a better life than at the moment will be beneficial."

A spokesman at Great Ormond Street Hospital said: "The neurology department at the hospital has only a small private practice reserved for patients who don't qualify for NHS treatment.

"Children from abroad therefore have to be seen privately. Children with neurological problems, including epilepsy, need to be under local paediatric care and therefore referrals are accepted via these teams.

"All NHS referrals are discussed by all consultants and prioritised accordingly. The waiting list is therefore kept relatively short."

proctori@hertsessexnews.co.uk