The National Institute for Health and Clinical Excellence has been criticised by its own senior advisers for not listening to experts when deciding to limit the use of the only drugs available in the UK for Alzheimer's disease.
The institute's guideline development group, made up of dementia experts, patients and carers, has criticised last week's ruling, which restricted the use of three drugs known as cholinesterase inhibitors to people with moderate forms of the disease and a fourth drug, memantine, for severe cases.
Members of the group say the decision was based on an overly rigid adherence to NICE's technological review, without sufficient account being taken of the social and personal costs of Alzheimer's.
Development group chair Dr Andrew Fairburn wrote to NICE's technology appraisals committee in February with a range of criticism including worries that the scoring system to define mild or moderate cases of the disease was inaccurate.
He said: 'The methodology used to justify the decision is flawed and inappropriate for people with Alzheimer's and their families as it does not take into account the full social, personal and health-related costs'.
Another group member and director of the Research Institute for the Care of the Elderly, Professor Roy Jones, said: 'Studies have shown that memantine saves carers one and a half hours per day as sufferers seem to be able to go to the toilet and feed themselves unaided, and have less agitation.'
Professor Jones said the decision to limit the use of the cholinesterase inhibitors was based on 'flawed thinking,' while concerns about side-effects were exaggerated.
'They are the only drugs for mild to moderate Alzheimer's, yet clinicians will have to tell patients to wait until they are worse and then come back... when keeping patients in the mild stage is surely what we should be trying to do.'
An umbrella body of patientsgroups, the Royal College of Psychiatrists and the Royal College of Nursing is considering applying for a judicial review of the decision, but this could be time-consuming and expensive.
A NICE spokeswoman said the organisation had ' gone the extra mile' in coming to its decision and taken advice from experts.
She said the evidence showed the drugs only affected about 30 per cent of cases of patients with mild to moderate Alzheimer's, and that even then the impact was not great.
The spokeswoman added: 'We have to make our decisions based on evidence like that when money is scarce in the NHS. The drugs can still be used in some cases where it is appropriate.'
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