Alzheimer Scotland outraged at NHS QIS dementia drugs decision

November 22 2006
To: News/Health/Community Editors

Alzheimer Scotland is outraged by the anticipated announcement today by NHS Quality Improvement Scotland (QIS) that they will validate the decision taken by the National Institute for Clinical Excellence (NICE) to make dementia drugs (Donepezil, Rivastigmine and Galantamine) available to people in the moderate stages of Alzheimer’s disease only.

Alzheimer Scotland’s Chief Executive Jim Jackson says,

“NICE’s decision to limit the prescription of these drugs, which provide a lifeline to people with Alzheimer’s disease and their carers, has been flawed from the outset. It is shameful that NHS QIS has decided to follow suit in Scotland without undertaking a full cost effectiveness analysis based on Scottish factors.”

He continues,

“This means that in the future 10,500 people in the early stages of dementia are being condemned to waiting for treatment until they have deteriorated because Scottish institutions – the Scottish Executive Health Department and NHS QIS – have failed to analyse critically the NICE decision.”

NICE's calculations were based on balancing the costs of care for people with early Alzheimer's disease to the NHS and social services in England with the cost of the treatments. However, Scotland's free personal care policy means that the cost to the NHS and social services of care at home is higher than it is in England, shifting the balance of cost-effectiveness. The treatments help to maintain greater independence for people with Alzheimer's disease and so reduce the reliance on free personal care. There are currently 16,500 people with Alzheimer's disease receiving free personal care at a cost of £3,323 per person per annum. The average cost for a year's drug treatment is just £1,010. Alzheimer Scotland does not believe that the impact of free personal care and other Scottish differences on cost effectiveness have been properly analysed.

The current cost of the treatments for people with early Alzheimer's disease is estimated at £2.84m. However, any savings from NHS QIS's proposals would fail to reduce the expenditure by this amount, for the following reasons:

• People currently receiving treatment would continue to do so, reducing the saving for a number of years
• There are more people with moderate Alzheimer’s disease (14,500) than mild Alzheimer’s disease and under NICE guidelines the majority of this group would be trialled on the drugs for a 6-month period
• The cost to the NHS and social services of not treating people would mean the reduction of expenditure would be less. For example drug treatments lead to significant savings in terms of inpatient admissions to acute psychiatric beds saving approximately £1,271 per person, per week.

“The Scottish experience of treating people with early Alzheimer’s disease has been positive, and the cost is modest. Alzheimer Scotland will be asking consultants to exercise their clinical judgement and, where appropriate, prescribe these treatments to patients in the early stage of Alzheimer’s disease when they believe it will be in the patient's best interests. We will also be asking NHS Boards to adopt their prescribing protocols accordingly.”

Alzheimer Scotland’s Chief Executive Jim Jackson is available for interview. Interviews with people with dementia who are on the medication and their carers can be organised.

Contact details:

Sarah Bromley, Awareness Manager, tel 0131 243 1453, mob 07904 624 696, sbromley@alzscot.org

Jim Jackson, Chief Executive, tel 0131 243 1453, mob 07747 025 041, jjackson@alzscot.org

Kate Fearnley, Policy Director, tel 0131 243 1453, mob 07791 028317, kfearnley@alzscot.org

Notes for Editor:

There are currently 10,500 people with mild Alzheimer’s disease in Scotland and the cost of providing drug treatments for this group is £2.84 million per annum. This is less than 0.3% of total NHS Scotland’s drug budget and 5.7% of the total spend on mental health drugs.

Further implications of withdrawing treatment for early Alzheimer’s disease:

• Treatment can help to slow the decline of the illness. The guidelines issued by NICE state that only patients with a Mini Mental State Examination (MMSE) score of between 10 and 20 points are eligible for medication. However, studies indicate that patients who receive treatment when they have a MMSE score of over 20 benefit from the treatment for a period of approximately 33 months (compared to 13 months for those who begin treatment with a score of 20 or under).
• Without treatment patients would be more reluctant to seek a diagnosis in the early stages where they have the insight to make legal and financial plans for the future, as well as actively participating in health and social services.
• By delaying diagnosis and access to appropriate support systems, patients in Scotland would be less knowledgeable and therefore less able to take advantage of the recent Adults with Incapacity Act legislation which allows them to appoint a power of attorney and organise other financial and welfare matters.
• The burden placed on carers would be far greater increasing the cost of their own health. Carers of people with dementia are 50% more likely to take medication for stress and physical symptoms.
• The NHS is committed to the principles of patient involvement and health equality. Currently people with early stage Alzheimer’s disease are becoming more involved both locally and nationally in the planning of dementia services. However, most of these people are receiving treatment. Under the NICE guidelines, newly diagnosed patients would not be eligible for the same treatment unless they were in the moderate stages of Alzheimer’s disease. At this point their insight may be sufficiently impaired to prevent them from participating on such a level.
• The NICE guidelines undermine the principle that treatment should be based on clinical need and not the ability to pay.

Dementia Facts

• Dementia affects approximately 64,000 people in Scotland.
• 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.