Family paid £38,000 for 18-year-old's NHS op (From Gazette & Herald)

Family paid £38,000 for 18-year-old's NHS op

RYEDALE MP John Greenway has helped secure a refund for a North Yorkshire family that paid a large sum of money for treatment for a girl who contracted variant Creutzfeldt-Jakob disease (vCJD).

The teenager was only the third person in the UK to have the experimental treatment which may slow the progress of the brain-wasting disease.

The 18-year-old girl's operation was initially shrouded in political controversy, after her father was forced to foot a £38,000 bill for a crucial piece of surgical equipment.

But he has now had the money refunded, following the intervention of Mr Greenway. The MP raised the case in the House of Commons last autumn, calling for the NHS - which performed the treatment - to repay the cash.

He said this week that he was delighted the father had since been refunded.

The girl, whose identity is being kept secret, fell ill last year with suspected vCJD - becoming the UK's 144th victim of the human form of "mad cow disease".

Health services bosses sanctioned her treatment with the experimental drug Pentosan polysulphate (PPS), which is injected into the brain. But five days before the operation was due to take place, surgeons refused to permit the use of a vital piece of equipment called a sterotactic frame.

Mr Greenway said in the Commons that doctors had been concerned that the frame would be contaminated with vCJD.

The girl's father, who was desperate for the operation to take place, had been forced to buy a frame himself from Sweden for the full cost, and the operation was then allowed to go ahead.

Health secretary John Reid said he could not comment on individual cases but added: "Any family who found themselves in such a position would obviously seek out every possible avenue for relieving pain, removing symptoms or curing the disease itself - all of us would do that. That is perfectly understandable, but we have not yet found a medically-verifiable way of diagnosing or treating this terrible disease."

Dr Reid said Pentosan was not yet licensed in the UK, as there could be adverse side effects, such as bleeding.

As a result, doctors have to take personal responsibility on whether to treat a patient. The treatment first hit the headlines when a Belfast teenager, Jonathan Simms, was given it after a lengthy High Court battle.

Mr Greenway said he believed the treatment had had a positive effect on the North Yorkshire girl's condition, which had stabilised.

He said he had been angry that the girl's father had been forced to pay for the frame.

"He was only doing what any other father would have done in the circumstances, but the NHS should have footed the bill."

There had only been two other operations of this kind, and it would "hardly have opened the floodgates" for the NHS to pay up.

"If there are any other cases of vCJD, the NHS should foot the bill from the start. That is what it is there for."

Updated: 11:14 Wednesday, April 07, 2004