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UK
Dementia Patients and Carers set NICE a challenge
By Alzheimer's Society, UK, Mar 31, 2005 - 9:14:38 PM

People with dementia and their carers have set the National Institute of Clinical Excellence (Nice) six challenges as part of the Alzheimer’s Society’s response to draft recommendations on drug treatments for Alzheimer’s. The Alzheimer’s Society believes that Nice can meet these new challenges and change its decision to withdraw drug treatments for Alzheimer’s from the NHS.

The challenges were submitted to Nice on Tuesday 22 March, at the end of its period of public consultation. People with dementia and their carers asked Nice to:

Give the evidence of people with dementia and their carers more weight
Nice guidance should reflect the views of patients and carers and meet their healthcare needs. Thousands of people affected by dementia have taken part in this appraisal and this evidence should be given more weight.

Base any calculation of cost effectiveness on a measure of quality of life that is appropriate for dementia
The model used to determine whether these drugs offer good value for money was based on the wrong assumptions. Drug treatments can improve quality of life for many people with dementia and their carers. The guidance should consider what matters most to people with dementia and their carers.

Recognise the benefits that the drugs bring for unpaid carers
Most dementia care is provided by unpaid family and friends. The model does not include any benefits that these drug treatments bring for carers. Carers place a high value on the benefits that the drugs bring for both themselves and the person that they care for – both need to be included.

Take into account accurate costs of dementia care
The model is based on costs that are too low, for example the cost of full time care is set at £355 a week. This results in a substantial bias in the final calculation of cost effectiveness. The full spectrum of care, including NHS continuing care, should be taken into account when calculating costs.

Ensure that the model reflects clinical practice
The model assumes that everyone who starts treatment remains on it. In fact only half of the patients who start treatment benefit from it and those who do not benefit stop taking the drugs. Only the costs of those who continue on drug treatment should be used to determine whether they are effective.

Be transparent about how the final costs have been calculated
From the information made publicly available it is impossible to tell how Nice have come to their final costing. This information should be transparent and publicly available.

Neil Hunt, chief executive of the Alzheimer’s Society said, ‘Nice has had the biggest ever response to one of its consultations from members of the general public. This clearly shows the strength of feeling about why drug treatments that work for people with dementia should be available on the NHS. People with a diagnosis of Alzheimer’s wrote to Nice – without drug treatments, this would not have been possible.’

‘Our six challenges, represent the views of people with dementia and their carers. If Nice meets these challenges, we are convinced that it will change its guidance to reflect the reality of the people whose lives have been affected by dementia.’

Representatives from the Alzheimer’s Society met with Health Secretary Dr John Reid to discuss the Department of Health’s submission to Nice, and to ensure that the voices of people with dementia and their carers are heard in this debate.

The Alzheimer’s Society’s submission is available on request. Interviews with people with dementia and their carers can also be arranged.

‘The difference in my life was outstanding. I was given my life back, albeit changed, from sitting zombie like all day I started to be glad to wake up. I saw things in colour again, I could make conversation with my family, I could now choose for myself the right clothes to wear. Such joy, such simple things, all courtesy of two little Reminyl tablets a day.’

‘Mum is on Aricept and Ebixa – her memory is very poor now but she is happy, laughs, jokes, does crossword puzzles. She is content and knows she is loved… She is funny, mischievous, and has an interest in life. I didn’t expect this at all after 5 ½ years.’

‘All of the costs of my mother’s care, both at home, with private carer support in addition to family, and subsequently within the care home, have been met by the family. Over ten years this is a significant sum of money for which no NHS support has been forthcoming. This situation is the norm and the debate about the cost to the NHS of medication should be assessed in this light. One cannot help but wonder if the NHS were paying for the true cost of the care of Alzheimer’s sufferers, as opposed to the families of sufferers, the calculation of cost benefit when viewed against the enormous costs of such care would not be different.’

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