Primary care trusts must retain their right to decide whether patients receive controversial drugs in exceptional circumstances, PCT leaders have warned.

They were responding to comments from National Institute for Health and Clinical Excellence chief executive Andrew Dillon, who this week called for "consistency" in the way PCTs assess exceptional funding cases (watch an interview with Mr Dillon here).

Mr Dillon's comments, made in a BBC Panorama interview, followed two weeks of controversy that saw the advisory body slammed for denying expensive cancer drugs while PCTs were accused of running "postcode lotteries".

NICE chair Sir Michael Rawlins hit back at critics in an article on this week. He said: "The NHS has finite resources available for healthcare and those it does have must be used in a manner that is fair to everyone... I understand, better than most, the miseries of cancer, but NICE has to take account of the interests of all who depend on the NHS for their healthcare."

Senior PCT figures pledged support for NICE, but warned that local decision-making must be protected.

Cost effective

Hull teaching PCT chief executive Chris Long said: "There may be some circumstances pre-guidance where organisations might say 'in this case, given the condition and the state of disease, it may be cost-effective to use this therapy'.

"Freedoms must be retained largely because it would be impossible to write rules that could be applied consistently and fairly to the whole population."

Mr Long said the institute had to make its decisions against a backdrop of public "misinformation" but "NICE was set up to do a really difficult job. By and large, they do it well".

East and North Hertfordshire PCT chair Pam Handley said her organisation was producing an information leaflet to help patients understand how funding decisions were made.

Uncaring bureaucracy

"We're seen as bureaucratic and uncaring and we've got to do much more to dispel that image," she said. "I wouldn't want to see a situation where we've all got to toe a line, because there will always be clinical exceptions."

PCT Network director David Stout warned that "tying up" decision-making on drug therapies could reduce investment in better-value therapies. But he added: "It is difficult to say to the public why you can live 10 miles apart, have the same condition and have different decisions. I do think this is an issue we have to think about."

While there was an argument for consistent national criteria for exceptional cases, this was likely to result in fewer patients receiving drugs, he said.



NICE ruled in 2006 to allow its use in "limited circumstances" after then health secretary Patricia Hewitt questioned a ruling by Stoke primary care trust not to fund the drug. The decision followed massive media coverage of the issue.


The Alzheimer's Society is campaigning against NICE's decision to recommend that the drug is only used in moderate stages of Alzheimer's disease. The High Court ruled in May that NICE must reveal the model it used to make its decision, but NICE has applied to the House of Lords to challenge this, saying the decisions it makes are "among the most difficult in public life".


NICE guidance is still awaited on this drug for age-related wet macular degeneration after Derbyshire County PCT and Pfizer, which manufactures a similar drug, lodged appeals. The case was heard by the institute's appeal panel on 30 June.

Last month, Warwickshire PCT and manufacturer Novartis agreed an out-of-court settlement in a case brought by three patients against the PCT over supply of the drug.

Also see NICE basks in new watchdog's approval