Over 1,000 cancer patients refused drugs by NHS managers

More than 1,000 patients been turned down for cancer drugs in the last two years because NHS managers judged they were not "exceptional" cases, according to a new report. The Rarer Cancers Forum, which compiled the data, called on ministers to intervene to end a "bizarre and demeaning" postcode lottery, which it said was leaving patients to die. Their analysis shows that almost all patients in some areas were given the often expensive drugs, while in other areas no patient received them.

The call comes just days after patients groups and doctors reacted angrily to a decision that four kidney cancer drugs were not cost effective enough to be provided on the NHS. The National Institute for Health and Clinical Excellence (Nice) judged that the drugs, which can prolong the average sufferers life for around five or six months, did not provide enough benefits for their cost of up to $48,000.

Primary Care Trusts have a duty to make the drugs available if they have been approved by the watchdog. But NHS managers can also choose to fund drugs which have yet to be approved or have been turned down by Nice if they think a patient's case is "exceptional". The report shows that while the majority of the 5,000 requests to be exceptional cases were approved, 1,300 were turned down. It also reveals wide variations in how some trusts judge what is "exceptional", for example some take into account a patient's wider family situation, whereas others look only at their medical case. Earlier this year a High Court judge ordered an NHS panel to reconsider its decision to refuse one of the kidney cancer drugs, called Sutent, to a woman who is the sole carer of her seriously ill husband, claiming it had not looked at her circumstances "in the round".

The figures, obtained under the Freedom of Information Act, show that more than 5,000 patients asked for their cases to be considered by their local healthcare authorities, since October 2006. While 96 per cent of patients in living in Mid Essex had their requests approved, all those in South West Essex who asked to be considered "exceptional" cases were turned down.

The committees who made the decisions were often controlled by NHS managers rather than doctors, the charity, which received detailed answers from 104 of the 152 PCTs across the country, a total of 68 per cent, claims. The Forum plans to submit the report, Taking Exception, to the Department of Health. Penny Wilson-Webb, from the charity, said: "The NHS should be available to all who need it. "Yet 1,300 cancer patients were denied the treatment that could have made all the difference to them. This audit shows that the exceptional cases process is in chaos and patients are suffering. In the last 20 months, 5,000 cancer patients have been forced to plead for their lives. There has to be a better way. We urge the Government to ... end this bizarre and demeaning lottery."

A spokesman for the Department of Health said: "We have heard from patients that one of their major concerns is the perceived "postcode lottery" in access to drugs – that there are too many variations around who gets access to prescribed drugs and that these variations are a lottery depending on where you live. "The draft NHS Constitution will address this by making it explicit that patients have the right to NICE-approved drugs if clinically appropriate. We will also speed up the national process for appraising new drugs and make more transparent and consistent the process for local funding of drugs not appraised by NICE or where NICE has yet to issue guidance."

Roche, the pharmaceutical company, provided funding for the new research, but the charity insisted it retained editorial control.

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