THE parents of a teenager with severe epilepsy say health officials are taking too long trying to improve the condition of their son.

Jon and Jan Barnes begged Abertawe Bro Morgannwg University Local Health Board for 17-year-old Stephen to be referred to the National Hospital for Neurology and Neurosurgery after Welsh doctors were reportedly unable to improve his condition.

But weeks after an emotional and public plea, the couple say little progress has been made.

Jan, 49, said: "Stephen is losing more of his life as each week passes.

"To them he may be just a number in the system, but to us he's our son.

"It feels like being held to ransom."

Stephen was diagnosed with sub clinical epilepsy in 2006.

Since then, he has been given a selection of drugs, such as Tegretol, Topiramate and Lamotragine — which have failed to improve his condition say his parents.

"In some cases they have made him worse because of the side effects," added Swansea Airport worker Jon, 51.

The family, of Cwrt y Cadno, Birchgrove, were told earlier this year that the cause of his seizures was thought to be a cyst on his brain.

Referral

Jan said: "It had been found some three years earlier, and we were informed not to worry about it.

"The doctor who saw the results recommended Stephen attend the National Hospital for Neurology and Neurosurgery."

But, despite getting a referral from their local GP, the couple say they have yet to have any sign of an appointment taking place.

Last month, the family made an emotional plea in The Post to ABM officials for Stephen to be seen by a specialist in London. Last night, Jan and Jon said they had been met by even more obstacles since then.

"Despite being told by ABM's investigations and redress office that a report had been written regarding the investigation into Stephen's treatment, I have now been informed by a letter from another ABM department that no such report exists," said Jan.

"We have also been told arrangements for telemetry equipment and a suitable cubicle are to be made available for Stephen on a paediatric ward in Morriston — but haven't yet had a date.

"And we have also learned that a hospital doctor does not feel he can refer Stephen to the National Hospital for Neurology and Neurosurgery, because he has only seen him once.

"But we would have seen him more than once had one of our appointments not been replaced by an appointment with the epileptic nurse."

Jon added: "It is months since we first inquired about a second opinion, meanwhile Stephen is regressing daily.

"We are frustrated in the extreme."

ABM University Local Health Board said it was not in a position to discuss Stephen's case on an individual basis, because it would breach confidentiality rules.

But a spokeswoman added: "Services are commissioned in advance both with Welsh hospitals and in English hospitals — where a particular service may not be available in Wales.

"Health boards in Wales also have an Individual Patient Commissioning Process. This allows specialists who believe a patient would benefit from care at a hospital outside of Wales to have the opportunity to put forward a clinical case for funding on a patient- by-patient basis."

ben.wright@swwmedia.co.uk

Web link

http://tiny.cc/stephenbarnes