200 cancer victims left to die by NHS

Published on Sunday 15 March 2009 22:43

ALMOST 200 cancer patients have been left to die in Scotland in the last two years after their last-ditch attempts to get life- extending treatments were rejected by the NHS, campaigners claimed today.

A report by the Rarer Cancers Forum found that nearly 1,300 patients were forced to face health board committees to plead for access to cancer drugs which would otherwise be denied to them.

But the charity said that in almost 200 cases the requests were denied, leaving patients to go without treatments with the potential to extend their lives or forcing them to pay for the drugs themselves, potentially costing 21,000 each.

In many cases the treatments were already approved by drugs watchdogs but patients were still made to go through the often long process to see if they qualified for so-called "exceptional" funding.

The report comes after The Scotsman earlier this year revealed wide variations between health boards when it came to approving requests for non-approved drugs.

The Rarer Cancers Forum asked health boards to provide details of their policies on exceptional cases – the process patients must go through if their doctor decides they need a drug which would not otherwise be available for them to prescribe in their area.

Five boards said they did not have written protocols to govern how exceptional cases should be processed. Of these Highland and Western Isles said they were developing them, but Borders, Dumfries and Galloway and Lothian simply said they did not have written protocols.

The report, Exceptional Scotland? also found each board differed in how it defined an "exceptional case" – something that would make a patient a special circumstance to give them a treatment.

The report also found that decisions on exceptional funding could take up to 16 weeks.

Overall, 85 per cent of exceptional case applications were successful. The charity said that the 15 per cent rejection rate compared favourably to England's level of 26 per cent of cases rejected.

But the report said this still meant that 183 patients had their cases rejected. Extrapolated to cover all 14 boards, this suggests 197 patients would not have been successful in getting the treatment and would either have gone without or pay for it themselves.

Stella Pendleton, director of the Rarer Cancers Forum, said: "Patients with rarer cancers face enough hurdles in getting treatment, and many of the treatments they need are not even licensed. They should get the treatment they need on the basis of clinical need alone, not on the media interest that is shown in their case."

Richard Davidson, Cancer Research UK's director of public affairs, said: "This report confirms that the postcode prescribing lottery remains a major problem."

A Scottish Government spokeswoman said: "Scotland has good, internationally regarded arrangements for the introduction of new medicines and technologies and work is under way to make further improvements."

'I feel like a huge weight has been lifted off my shoulders'

JIM Reap knows only too well the difficulties faced in trying to get the NHS to pay for a life-extending treatment. Just one month ago, the 52-year-old was having to rely on fund-raising by colleagues to pay for drugs to treat his kidney cancer.

Now, after his story was featured in The Scotsman, the health board has finally agreed to pay for the treatment.

Mr Reap said: "It is fantastic news. I feel like a huge weight has been lifted off my shoulders."

The father of two said his family was devastated after funding for the drug Sutent was rejected after an exceptional case committee hearing.

"The doctors said, 'This is what you need, but we can't give it to you'. I felt a wee bit abandoned by the NHS."

Thanks to the fundraising efforts of colleagues, friends and family and by using his own money, Mr Reap, from Falkirk, was able to start treatment with Sutent.

The drug is not approved by the Scottish Medicines Consortium for NHS use.

Mr Reap and his wife, Louise, 43, a midwife, had appealed to NHS Greater Glasgow and Clyde, where he was receiving treatment, and NHS Forth Valley, their home health board, to try to get Sutent. But their appeal was rejected in December, leaving the family no choice but to pay.

"My wife and I felt that we had no option but to go down that route," he said. "I had been told that the cancer was aggressive and I did not think that I had any choice."

The first treatment with Sutent, which costs 3,400 for a six-week cycle, was given to Mr Reap at a reduced cost by the drugs company. But the couple soon realised that their savings would not go very far if they continued with the treatment.

It was then that his colleagues at Falkirk Council started a fundraising appeal that went on to raise more than 20,000.

But now after paying for one cycle of treatment, the NHS says it will pick up the cost of his treatment.

Mr Reap said the money raised would be kept safe in case he needed another treatment in future which was also not funded by the NHS.