NICE guidelines will delay diagnosis and deny thousands of Dementia sufferers adequate care - Burstow

6.09.33pm GMT Fri 13th Oct 2006

In reaction to the NICE's decision to reject appeals on its guidance for anti-dementia drugs, research conducted by Paul Burstow MP, co-chair of the APPG on Ageing, suggests that the availability of all drugs could fall significantly as a result.

Mr Burstow's findings make it clear that dementia sufferers have faced an uphill battle in obtaining Ebixa in recent months as a result of uncertainty over the outcome of the appeal. In a survey of all Primary Care Trusts in England, just over half of those who responded did not generally support the prescription of the drug (55%).

For many PCTs the decision not to support the prescription of Ebixa is based on the judgments of regional prescription review panels following the initial NICE recommendations. This is the case despite the claims of many influential groups, including Clinicians and the Alzheimer's society, that the NICE recommendations are "perverse" given the evidence considered.

The vast majority of PCTs surveyed reported that they would implement the NICE guidance on prescription of the drugs in full once it was finalised (87%).

This could include restricting the use of anti-dementia drugs other than Ebixa to only those patients in the moderate stages of Alzheimer's. A number of PCTs also indicated that they expected the amount of dementia drugs prescribed in their areas to decrease should the appeal be turned down.

One respondent made the potential impact of the decision plain:

"Should the draft NICE guidance be confirmed then this will dramatically change our practice. It would seem very unwise and probably unethical so see people early and then tell them that they are not eligible for treatment until they get significantly worse which they inevitably will"

Responding to the research, Paul Burstow MP, co-Chair of the APPG on Ageing said

"It is disappointing that the original NICE decision fails to recognise the benefits that that these drugs provide to sufferers and their carers alike."

"These treatments are absolutely essential for maintaining the quality of life both for people with dementia and their families. There is a grave danger that our already hard-up NHS trusts will restrict the prescription of these drugs to the further detriment of patients."

"In the absence of Ebixa, severe dementia sufferers are likely to be heavily sedated. But sedating people is not the answer as it reduces a patient's quality of life without making any attempt to treat the underlying disease."

Notes to Editors

1) The National Institute for Clinical and Health Excellence (NICE) appraisal for drug treatments recommends three anti-cholinesterase drugs (Aricept, Exelon, Reminyl) only be funded for people in the moderate stages. Ebixa will not be funded.

2) Ebixa is the only drug designed to treat the extreme behavioural symptoms of late dementia.

3) The survey was sent out to all English Primary Care Trusts (at the time 309) and received replies from 162 PCTs in all (52%).

4) 153 PCTS responded to a question concerning the local guidelines for the prescription of Ebixa. 84 of these PCTs indicated that they did not possess any guidelines for the drug or had made the decision not to support Ebixa in their area (55%).