Counting pennies, destroying lives

Hundreds of thousands of people with dementia will be forced to wait for their condition to deteriorate into a state of confusion and fear before being prescribed drug treatments that work, following a cost cutting move by the National Institute for Health and Clinical Excellence (NICE). In a disgraceful double blow, Ebixa, the only treatment for distressing behavioural symptoms in late dementia will no longer be available.

The NICE appraisal panel, containing no experts in dementia care, has ruled that treatment will be restricted to the moderate stages of the disease while people in the early and late stages are to be denied.

Neil Hunt, of the Action on Alzheimer's Drugs alliance, representing over thirty charitable and professional organisations slammed the decision,

'This decision is outrageous. It will rob families of precious time in the early stages of dementia and deprive people of comfort and dignity in the final stages of their lives. NICE has rejected the views of experts, clinicians, and most importantly people with dementia and their carers all for a saving of just £2.50 per person per day.

Where is the clinical excellence in a decision that puts cost cutting and flawed calculations ahead of care and quality of life? NICE are victimising the vulnerable in society and we will do everything in our power to make sure this unethical and unworkable guidance is overturned.'

Professor Clive Ballard, a leading old age psychiatrist says,

'Doctors will also be forced into the impossible position of watching patients deteriorate before they prescribe drugs they know will help. For what other condition would you wait until people decline so much they can no longer look after themselves before giving them treatment? You would not wait till someone is suicidal before giving them an antidepressant.

Treatments also be withdrawn when patients enter the severe stages of dementia, leaving dangerous and unlicensed sedatives as the only alternative. This is dangerous and unacceptable.'

Keith Turner a person with Alzheimer's says,

'How can you put a price on these drugs? 19 months ago I was slipping very quickly down a lonely road, it was scary and confusing. These drugs have given me my life back and taken away my fear. We know they won't work forever but they are a priceless gift. I wouldn't qualify for these drugs under current proposals. I don't know how NICE can sleep at night knowing they are making people live with fear and confusion, when they have a chance to help.'

The Alliance is urging people to fight today against a decision that will affect them tomorrow. The likelihood of the decision impacting you or someone you care about is very high. Dementia already affects 750 000 people in the UK and this number is expected to double in the next 45 years.

Get involved now by contacting the Alzheimer's Society, lobbying your MP and the Department of Health to intervene.

For further information, contact the Alzheimer's Society press office.

Notes for editors

• 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.
• The decision contradicts current government policy in improving access to care and commitments to improve older people's mental health services.
• NICE have received the biggest ever response to a consultation with over 9000 people writing to protest. NICE have refused to listen.
• Dementia drugs are funded everywhere in Europe but Albania. This decision will see Britain return to the dark ages of dementia care.
• The only alternative to treat distressing behavioural symptoms in late dementia is unlicensed neuroleptics. These are dangerous sedatives that increase the chance of heart disease and stroke.
• NICE guidance applies to England and Wales. People currently on the drug treatments will continue to receive them.
• There are approximately 381,920 people have Alzheimer's disease in England and Wales. Approximately 72,565 people would be in the mild stages of dementia and 309,355 people are in the moderate to severe stages.
• Dementia affects one in 20 people over the age of 65 and one in five over the age of 80.
• For information and advice on Alzheimer's disease or other forms of dementia call the Alzheimer's Society national helpline on 0845 300 0336 or visit http://www.alzheimers.org.uk/.