NICE chief executive Andrew Dillon has attacked the varying decisions of NHS primary care trusts (PCTs) over appeal decisions to fund non-NICE-recommended drugs in ‘exceptional circumstances’.

On the BBC Panorama programme ‘The NHS Postcode Lottery: It Could Be You’, Dillon called for greater national consistency in deciding whether to make funds available for drugs that are not recommended for regular NHS use. An ‘exceptional circumstances’ appeal is made by the doctor or consultant to the PCT (the local administrative NHS body that handles funding) where they believe a patient can gain clinical benefit from a drug that the PCT does not presently fund because NICE guidance does not mandate that it should be funded.

PCTs’ decisions vary within local areas. The programme focused on the use of Avastin for bowel cancer, and found that in 2007-8, Greater Manchester PCT in the north-west agreed to only one out of eight ‘exceptional circumstances’ appeals, while its neighbouring PCTs agreed the overwhelming majority.

No postcode
"It shouldn't make any difference where you live," Mr Dillon told the programme, “there ought to be a common basis for decisions about exceptional circumstances. Anybody who uses the NHS for their care is entitled to expect that.

"What patients need to do is to find out from those who are making the decision what the basis of that decision is, and if they don't think it's reasonable, if they don't think it compares appropriately with decisions that are taken elsewhere, ask, 'why not?'"

Although NHS trusts are legally obliged to fund treatments approved by NICE, the timeline for doing so has been uncertain until the publication of Health Minister Lord Darzi’s recent ‘next stages’ NHS review, High-Quality Healthcare For All, which has specified that PCTs must now comply with NICE guidance on new technologies within three months of its issue.

The topping-up debate
The emotive issue of cancer drugs has led to a reopening of the ‘topping-up’ debate. Current NHS rules state that if a patient chooses to personally fund a drug such as Avastin that is not approved by NICE and the NHS, they must also pay for all other aspects of their NHS care (nursing, scans, consultant and outpatient appointments). This has been energetically highlighted in some of the press and by the Doctors For Reform pressure group, who are seeking to bring a legal test case against an NHS trust.

Health Secretary Alan Johnson has asked DH cancer ‘czar’ Professor Mike Richards to produce a report on ‘topping up’ NHS care by October.