We were talking about Anna’s medication. Anti-dementia drugs seem to be very difficult for the NHS to swallow. NICE, the National Institute for Clinical Excellence, has a technical appraisal committee that says they are not value for money, not the ones already approved, which have very evidently helped Anna in the past, or new ones that coming along for someone with severe dementia. No-one seems to agree with them. If there is such a professional consensus that NICE has got it wrong, I don’t see why they should not use their clinical judgement and prescribe what they think would benefit their patients. This is a time for creative anarchism. Doctors used to be good at that. But, from the way people speak, you would think NICE guidelines are given the status of licensing the drugs for use.
For some time we could not get anyone to discuss memantine (Ebixa, one of the new drugs) for Anna. ‘We don’t prescribe.’ they said, because the PCT would not authorise NHS payment of these drugs. Don’t worry about that, I said, do you think it could help Anna. A specialist neurologist said, It would be worth her having a trial to see if it would work for her, and so we did. Anna has to pay for the prescription – out of her NHS pension: it is value for money for her - because the PCT said they were waiting on the NICE guidelines.
NICE, according to the government, is an independent organisation. The question about NICE is whether it is about clinical excellence, or about rationing. If the PCTs follow its advice without question, disregarding the judgement of their clinicians, it is a ruthless agent of NHS rationing. There is something Orwellian about its name and its function. But as much of contemporary government is beyond irony, a regulatory agency called NICE is only a small example of dissociative thinking, although it will affect the lives of all those people who are going to be diagnosed with dementia in the next few years.