In the week that NICE denied bowel cancer sufferers in England a drug that is freely available across much of Europe, and Sorafenib campaigner Tony Almond succumbed to liver cancer, Michael Portillo made a plea for democratic accountability over decisions affecting the availability of drugs.
The National Institute for Clinical Excellence, which is called NICE, decided this week that it is not going to fund a very expensive cancer drug which prolongs life at the end of a patient's life. This is the sort of decision that ought to be taken by ministers. Ministers ought to be proud to take this sort of decision and they ought to go out later and defend it. They might say, "We decided not to spend £10M on this drug that saved 2 or 3 people, we decided to put that money instead into another treatment that saved thousands of people; we're proud of this decision and we're going to stand for election on this issue". But no, all these decisions are now farmed out to quangos and councils and bureaucrats and officials, because ministers don't want to take responsibility for anything and the people who do take the decisions are beyond accountability.
Michael Portillo, BBC This Week, 19 Nov 2009
Who do you think should take the decision as to whether or not a life-saving or life-enhancing treatment is cost-effective enough to be provided free-of-charge on the NHS?
My understanding is that NICE provides guidance but the ultimate decision lies with politicians. Didn't Patricia Hewittt reject the advice on herceptin?
Ultimate responsibility does lie with politicians, but if you look at the public (and press) hostility to many NICE decisions you will see that the politicians have set up a convenient scapegoat.
Hewitt fast-tracked Herceptin and applied political pressure on the health authorities to fund it. She claimed that she had done "everything in her power" to make Herceptin available as early as possible, so it was hardly an executive decision.
Nicely provocatively and ambiguously worded poll, Gareth, which I've consequently abstained on. It's neither ideal that such decisions are taken 'at arm's length' from politicians (implying buck passing and scapegoating, as you suggest); nor is it the case that Westminster politicians are 'democratically accountable' for decisions affecting the English and Welsh NHS's, which is what NICE's remit covers, particularly if they're elected in Scotland.
In any case, should it be either politicians or quangocrats? In my view, these decisions should be taken by the NHS organisations involved in delivering treatment and actually spending the health-care budget, e.g. Foundation Trusts and Primary Care Trusts. Maybe they could get together amongst themselves at (English) national level to agree some top-level priorities in order to reduce the so-called 'postcode lottery' of treatments being available in one health-care district but not the neighbouring one. But ultimately, it should be down to those who have to take the heart-rending decision not to prolong someone's life in order to save others' whether particular drugs should be funded or not.
In any case, the 'postcode lottery' is often a euphemism for health-care apartheid: treatments being available in Scotland or Wales but not England. Some disparity of provision is inevitable if you devolve responsibility for these decisions down to local, or indeed national, level.
Whether you then make those decisions, at local level, democratically accountable by electing representatives to sit on the governing committees of Foundations and PCTs is another matter. And this is in fact Tory policy, as far as I'm aware.
If the decisions are taken by Foundation and Primary Care Trusts then you would have the postcode lottery in England that NICE was set up to resolve. Whilst most people agree with the concept of local decision-making, they don't like being denied treatment on the basis of where they live - they want a NATIONAL Health Service.
We hear a lot of complaint about NICE with precious little opinion about what should be done about it. At the Future of England debate Peter Facey made the (anti-English parliament) case that each local authority county ought to run its own health service and education system. That didn't go down too well.
Fair enough, but I think it makes clinical sense to make the decisions at the point nearest to actual need. For instance, there may be higher incidences of certain conditions in particular local areas, for whatever reason, which could result in giving greater priority to treating those conditions there compared with bureaucratically determined national priorities. You could alleviate the postcode lottery in other ways, such as imposing minimum levels of provision for particular conditions binding on all Foundation Trusts or PCTs, or by using the Brownian concept of 'entitlement' to particular treatments, making it mandatory for certain treatments to be available at least somewhere within each 'region' or Foundation catchment area.