Cancer patient claims PCT are playing God

Nick St Ledger, 39, is suffering from a rare form of cancer called spinal cord ependymoma.

He recently underwent major surgery to remove part of a tumour on his spine, and further treatment requires a drug called Temozolamide recommended by his consultant based at St Bart's hospital, London.

Nick, who is married with a seventeen month old baby, had been in remission from a previous bout of cancer for twenty years. He is desperate for the local PCT to confirm funding is available for Temozolamide, a drug used in the USA for the past ten years.

Nick said: "I had cancer between the ages of fifteen and nineteen and survived but at the end of March I found out it was back."

Nick had been suffering with back pain and was initially told he had sciatica. However, he and wife Mandy asked for an MRI scan but on hearing the NHS wait was 4-6 weeks decided to go private, paying for the scan themselves.

Within two days of having the scan at the Hurstwood Park Neurosciences Centre, Haywards Heath,,Nick was recalled and told he had a tumour on his spine.

Nick said: "I had an operation to de baulk the tumour and they removed most of it but, due to it's location, it couldn't all be removed."

Following the operation further scans revealed the tumour had spread.

Nick was subsequently referred to St Bart's hospital where he saw his original consultant, who treated him when he was a teenager, and recommended the new drug.

Nick said: "The consultant said chemo was available and there was a very good drug in tablet form. I could take it at home without having to make the long journey to the hospital - which is very uncomfortable for me."

A mix up with Nick's referral notes meant he had to make the trip back to St Bart's the following week and it was then that he received the bad news.

"I was told that the PCT won't authorise the drug until the funding is sorted out; they had a meeting on Friday 14 May and said they would call me back with a decision but they didn't ring."

Nick and Mandy tried to get an answer by calling and emailing the PCT but without any luck and finally their Macmillan nurse made enquiries on their behalf.

Mandy said: "Our Macmillan nurse has been wonderful. She said the PCT had advised her that the decision on Nick's drug has been deferred and that they can't give a time frame. Surely the consultant wouldn't have requested the drug if it wasn't the best on the market to fight Nick's cancer. If the PCT are not going to fund it why make us wait? It shouldn't take this long."

Nick and Mandy have called on Bexhill and Battle MP Greg Barker to help them fight their cause. Greg has written to them expressing his concern that the "life-saving drug" is "yet to be funded", and has also written to the Chief Executive of the PCT for further information.

Nick works for St Michael's hospice and said everyone there has been "very supportive and really nice".

The couple say they just want the PCT to hurry up and make their decision.

Nick said: "I'm already a month late with my chemo, I have tumours all up my spine. We are prepared to take out a loan to pay for the drug. We just need to know what the PCT's decision is - it seems like they are playing God and I am disgusted by the whole way this has been handled."

In response to Observer enquiries a spokesman from NHS East Sussex said:

"We cannot comment on individual cases. However, we would stress that we always work to make decisions as quickly as possible on the funding of drugs or treatments which are not automatically funded by or licensed for certain uses by the NHS.

"It is extremely important that all the relevant information is considered in reaching these difficult decisions.

"This can sometimes take time to gather as the evidence we look at will often include the latest guidance from clinical experts, such as hospital consultants and other specialists.''