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Andy Jones: Naughty ­ and not nice

The PR people at NICE must be busy indeed at the moment.

The PR people at NICE must be busy indeed at the moment.

The restricted availability of medication on the NHS has been in the headlines once again. And there appears to have been a U-turn on policy after some intense lobbying by interest groups and a re-evaluation of old research data by drug companies.

The original meaning of the word nice was fastidious, fussy, difficult to please. And it looks as if NICE is taking us back to that old definition. In March 2005 it published an interim consultation document suggesting drugs for dementia lacked the necessary evidence to suggest cost-related clinical benefit. This produced uproar from patients, carers and charities involved with Alzheimer's.

NICE retreated to its corner, went back to the drug company studies to re-evaluate MMSE scores for the moderately impaired, and in due course produced evidence suggesting there may indeed be a cost benefit for dementia when it has reached the moderate stage.This doesn't make sense; there can surely be no other condition where we wait for people to deteriorate until they qualify for treatment? By the time someone reaches a threshold score of 20, their chance of self-caring independent existence approaches nil, without substantial and expensive family and social supports.

The data suggests these drugs for dementia work in a dose-dependent way with measurable cognitive benefit. Something seems to have been missed. In addition to the cognitive improvements recorded by the MMSE, there are functional and behavioural improvements too that no one seems able to quantify. Every GP will know what I am talking about. I had one patient who used to get lost every time he left the house until he received treatment. Had he not received drugs I would very likely have been blamed by his relatives for withholding treatment to save money. We need advice on how to manage difficult situations like these.

At the moment GPs are confused and in a very difficult position. Are we expected to say: 'We'll just wait for a little more deterioration before we cross the "rationing by clinic" hurdle.'

Of course we could always avoid diagnosing the condition so that relatives don't have to push for a rationed treatment. But this really would be something of a cop-out.If we cannot afford to spend moderate sums each day maintaining good modern health care, we have a problem indeed. Herceptin, for example, costs some £2.50 per day ­ about the same per day as incapacity benefit.The great John Milton once wrote: 'Nothing will please the difficult and nice.' Perhaps he was right.

Dr Andy Jones is a GP in Stamford, Lincolnshire

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