• Peter Cardy, chief executive of the Multiple Sclerosis Society, is waiting with some trepidation for the results of the appraisal of beta interferon. The society lobbied parliament recently, voicing fears that beta interferon will effectively be banned from the NHS by Nice. "It looked to us, from the responses that ministers were giving in parliament and debates, as if they had not only written the questions for Nice but decided the answers as well," Cardy says. "That is quite alarming really. Nothing has happened [since the lobby] to make us change our minds. "On behalf of the Neurological Alliance, I have been in correspondence with Nice about ways they can ensure that patient priorities and valuations of interventions are taken into account. I think it is one of the areas where the commitment and principle is good but the practice has a long way to go."
There has been no assurance from Nice, he says, that patient concerns about a medicine - whether it is useful, burdensome, whether the route of administration is acceptable, and so on - will be given equal weight by the appraisal committee as the views of doctors and pharmaceutical companies. "There will always be a lurking fear that patients will say, 'I have got to have this drug in limitless quantities.' That is not our experience. Patients don't always want everything that medical science can give them."
Cardy is not convinced that health authorities will necessarily implement Nice guidance if it means paying for all patients with a certain condition to get an expensive new drug. "I don't see anything that suggests health authorities will be asked to take into account Nice's recommendations as a national priority, rather than to balance them against local priorities," he says.
• Harry Cayton,chief executive of the Alzheimer's Association, which will be submitting evidence to Nice during the appraisal of three dementia drugs later this year, says: "I'm absolutely prepared to give Nice a clear run until it proves itself to not be worthy of our trust.
"If there is a concern I share with some of my colleagues it is that the rhetoric about patient involvement doesn't yet meet the actuality, and we want to be sure that they understand the importance of developing ways of working that genuinely involve patients in the scrutiny of treatments.
"In the appraisal of the flu drug there was no one representing patient interests on the panel, although their guidelines say there should be. I know it was the first one and they did it jolly quickly, but it didn't actually happen.
"The list of patient organisations that was sent out in relation to submitting evidence on the anti-dementia drugs included several that were not patients' organisations at all and had no relevance to Alzheimer's. They have not quite got it right yet."
• Jean Mossman, chief executive of CancerBacup, has been involved in the consultation process now taking place over the taxanes - the new group of cancer drugs on which Nice will deliver a verdict at the end of this month.
"I think in principle it is very good," she says, " though I have a hesitation about how quickly it can process all the things that are likely to be relevant to cancer patients.
"If the process is anticipated to take 10 months to a year, it is not going to mean faster access to modern treatment. I have a hesitation about how quickly they can embrace and appraise all the new products.
"I'm concerned that health authorities are taking the stance that they won't fund new drugs until they have been through Nice. They are starting to do that, although clinicians are resistant. It's an excuse for not allowing new products to be used.
"My third concern is that if we can't afford chemotherapy for cancers now unless more money is going to be available, how are we going to be able to afford it just because Nice says we should use it? We should have centralised, ring-fenced funding for products that Nice endorses. I don't see how else it can be done."
She says she would hate to see a situation where drug A is recommended by Nice for cancer B, so the health authority funds it and will not pay for treatment for cancer C instead. There should be money given to health authorities not in general terms to implement Nice recommendations - as Alan Milburn implied in his allocation of the first £600m of the new budget money - but specifically to pay for a named drug.
