A quarter of doctors specialising in the cancer myeloma have admitted not telling their patients about expensive new drugs which have yet to be appraised by the National Institute for Health and Clinical Excellence, and nearly all of them said this was because they feared that doing so might “distress, upset or confuse” the patients.

Three quarters of the specialists who admitted withholding such information mentioned cost issues as a reason, while 40% said they did so because of a lack of evidence for the new treatments and 29% felt there was little point in discussing treatments that patients were unlikely to receive.

74% of the 103 myeloma specialists in England, Scotland and Wales who took part in the survey, which was carried out by the charity Myeloma UK, reported that their applications for such treatments had been blocked by Primary Care Trusts (PCTs), and around the same percentage said they had experienced delays of more than a month when applying to PCTs for funding of treatments on which NICE had not yet come to a decision.

Myeloma affects around 3,800 people each year in the UK, and around 2,600 are likely to die from the disease. NICE is currently appraising a number of treatments for myeloma, including Celgene’s Revlimid (lenalidomide), which the Scottish Medicines Consortium decided in May not to recommend. NICE is not due to make its decision on Revlimid until next spring.

Eric Low, chief executive of Myeloma UK, said that the survey’s findings had revealed that post-code prescribing is “rife” in the UK, with some patients getting access to life-extending treatments ahead of a NICE, decision “whilst others are left to die.” He added that Myeloma UK “wants to engage with the Department of Health to find a solution to this growing issue."

The poll echoes the findings of an audit conducted by the Rarer Cancers Forum earlier this month, which revealed that, out of 5,000 cancer patients in England for whom applications made been made to PCTs over the last 20 months to fund treatments not currently approved by NICE, more than 1,300 had had their applications rejected. These patients had effectively been “left to die,” said the Forum.