Drugs decision condemned by Alzheimer Scotland

EMBARGO: 00.01 11 OCTOBER
FOR: NEWS/COMMUNITY/HEALTH JOURNALISTS

Alzheimer Scotland has condemned the final guidance produced by the National Institute of Clinical Excellence (NICE), which states that the dementia drugs Aricept (donepezil), Reminyl (galantamine) and Exelon (rivastigmine) should only be used to treat those with moderate Alzheimer’s disease.

The decision from NICE has been made on grounds of cost effectiveness, an argument that Alzheimer Scotland states compromises the quality of life of people with dementia and their carers for the cost of two cups of coffee a day.

Alzheimer Scotland’s Policy Director Kate Fearnley says, “We are appalled by NICE’s misguided decision, which means that people diagnosed with a devastating illness are denied treatment which might help them. How can it be right to leave people to deteriorate, putting immense strain on them and their families before treating them with drugs that cost only £2.50 per day? The Scottish experience of treating early Alzheimer’s disease is that it is beneficial for both patients and carers. People with early Alzheimer’s disease should have the chance to try these treatments at a stage when the drugs may help them to live their lives as normally as they can, for as long as they can. Alzheimer Scotland is calling on the Scottish Executive and NHS Quality Improvement Scotland not to accept this perverse decision.”

James McKillop, Chair of the Scottish Dementia Working Group, a campaigning group run by and for people with dementia says, “I heard the news with disbelief. I know so many people in the early stages of dementia who have been helped by the drugs, the progress of their illness has been delayed and their quality of life dramatically improved. If the NICE guidelines are followed in Scotland, thousands of people will be left without hope of a better future. The Scottish Dementia Working Group will be campaigning to make sure that the decision made by Quality Improvement Scotland is both more sensible and more compassionate.”

Kate Fearnley, Policy Director for Alzheimer Scotland and James McKillop, Chair of the Scottish Dementia Working Group who has a diagnosis of vascular dementia are available for interview.

Contact details:

Sarah Bromley, Awareness Manager, tel 0131 243 1453, mob 07966 458 869, sbromley@alzscot.org
Kate Fearnley, Policy Director, tel 0131 243 1453, mob 07791 028 317, kfearnley@alzscot.org
Jim Jackson, Chief Executive, tel 0131 243 1453, mob 07747 025 041, jjackson@alzscot.org

Note for Editor:

Why NICE proposals should not be adopted in Scotland

The NICE assessment does not capture the quality of life benefits for people with dementia. Quality of life benefits are personal to the individual and have been shown to be difficult to capture with standard assessment tools.

The NICE assessment does not give sufficient weight to the impact of the illness on the carers of people with dementia.

The Scottish Intercollegiate Guidelines Network (SIGN) guidelines ‘Management of patients with dementia’ recommended the use of these treatments for all stages of Alzheimer’s disease.

The availability of these drug treatments has encouraged earlier diagnosis, which brings important benefits to patients and their families and, by allowing patient’s active participation to health and social care services. The progressive nature of the illness impairs planning, judgement, decision-making and communication. Withholding treatment until the moderate stage means that people’s insight is lost. It is only in the mild stages of the illness that a person with dementia is likely to be fully involved in decisions about their own treatment and care. Treatment should be used to maintain people at their highest possible level of functioning.

The SIGN Guidelines also recommend cholinesterase inhibitor treatment for people with severe Alzheimer’s disease. NICE fails to recommend memantine and does not consider cholinesterase inhibitors for late stage Alzheimer’s disease. When treatment for the later stages of Alzheimer’s disease has a very significant impact on the quality of life not only for the person with Alzheimer’s disease but also for the carer. Alzheimer Scotland believes that patients should be given access to treatments at this stage on the basis that the treatment will continue to be prescribed only where it is clearly of benefit.

NICE did not give sufficient attention to current clinical practice where these treatments are withdrawn from patients who do not or no longer benefit. NICE commissioned analyses, which showed that discontinuing treatment when it was ineffective made these drugs cost effective. Yet they rejected this evidence on grounds of possible sample bias.

Denial of these treatments will also undermine the principle of the NHS in Scotland that treatment should be based on patients clinical need and not their ability to pay. Those who can afford to do so will pay for these treatments increasing health inequality.

Scotland lags well behind England in healthy life expectancy. Offering people with Alzheimer’s disease these treatments is an opportunity to contribute to increasing the healthy life expectancy of some of the 10,000 people in Scotland with early stage Alzheimer’s disease.

People will be reluctant to seek a diagnosis if they know that in the initial stage of the illness there is no treatment available,

The lack of drug treatments for people with early stage Alzheimer’s disease will make it even more difficult for them to develop a positive approach to managing their symptoms and the knowledge that they have a degenerative illness

Dementia affects approximately 64,000 people in Scotland.

• 34,640 have Alzheimer’s disease
• 10,400 have mild Alzheimer’s disease
• 14,600 have moderate Alzheimer's disease
• 9,640 have severe Alzheimer’s disease

Alzheimer’s disease is the main form of dementia. The second most common is vascular dementia. As yet there is no cure.

Alzheimer Scotland is Scotland’s foremost voluntary organisation working for people with dementia and their carers. It:

• speaks out for the rights and concerns of people with dementia and their carers;
• operates services on over 60 sites throughout Scotland providing practical services such as day, evening and weekend centres, home care and befriending and carers' support services;
• provides the 24 hour national freephone Dementia Helpline (0808 808 3000);
• provides the website www.alzscot.org;
• supports a network of over 40 carers' support groups;
• provides information to carers, professionals and people with dementia;
• publishes leaflets, booklets, reports and a quarterly newsletter keeping carers and professionals up-to-date
• has a research programme.