MP Slams NICE and the Department of Health over Alzheimer’s Drugs and says listen to the experts

17/07/06

Mike Hancock, MP (Lib Dem – Portsmouth South) has written to Patricia Hewitt, the Secretary of State for Health severely criticising the decision of the National Institute for Clinical Excellence to deny drugs on the NHS to early-stage and severe Alzheimer’s sufferers.

This follows the Alzheimer’s Society making one of five appeals at the end of last week against NICE’s ruling and after the MP was written to by three experts in Older People’s health – Professor Alistair Burns, Professor of Old Age Psychiatry at the University of Manchester, Professor Roy Jones, Director of the Research Institute for the Care of the Elderly and Dr David Wilkinson, Consultant in Old Age Psychiatry and Chair of the Older Peoples Mental Heath Directorate of the Hampshire Partnership Trust.

In their letter, the experts make a damning indictment of the NICE. Firstly they point out that how invidious it is for both the patient and their doctor not being able to prescribe the drugs until a patient’s health has deteriorated and equally having to withdraw treatment if their Alzheimer’s becomes too severe. The experts who have written to Mike are also critical of the decision not to recommend that “memantine” should be allowed to be prescribed to patients with severe dementia. They say: “This will place clinicians in the invidious position of having to withdraw treatments from patients just as they are becoming more dependent and carers more stressed and at a point at which the treatment (memantine) has been shown to provide significant benefit. This decision is based on a clearly flawed statistical review of the memantine data.”

Mike Hancock said: “The current guidance puts doctors, patients and their families in a terrible position. I cannot believe this makes any sense at all. The experts who have been in touch with me have said that the Health Technology Appraisal (HTA) committee of NICE does not contain anyone expert in the treatment, management and care of Alzheimer’s patients. In contrast the Dementia Guideline Development Group does contain internationally acknowledged clinical and other experts in Alzheimer’s and has fundamentally disagreed with the decision of the HTA committee. This seems to be complete madness. The experts who wrote to me go on to say that NICE ignored ‘almost all of the evidence presented by external experts, patient groups and even that presented by the Department of Health itself… with no account taken of the huge amount of evidence in favour of the drugs.’ I cannot understand why NICE came to decision to deny thousands of people what experts working in the NHS say are effective treatments based on the available evidence. Unfortunately dementia particularly affects elderly people and they thought after a lifetime of work and paying taxes that the NHS would be there for them when they needed it. And it puts a significant burden on their families and carers. I hope that NICE will consider very carefully the current appeals against the decision. I also think that the Government should look carefully at the way that NICE is operating as it seems to have failed in this case and ministers also should have the guts to overturn its decision if it flies in the face of commonsense as seems to have done on treatments for Alzheimer’s”

Letter to Patricia Hewitt:

Rt Hon Patricia Hewitt, MP
Secretary of State for Health
Department of Health
Richmond House
79 Whitehall
LONDON
SW1A 2NS

17 July 2006

Dear Secretary of State

Please find enclosed a copy of a letter that I have received from Professor Alistair Burns, Professor of Old Age Psychiatry at the University of Manchester; Professor Roy Jones, Director of the Research Institute for the Care of the Elderly and Dr David Wilkinson, Consultant in Old Age Psychiatry and Chair of the Older Peoples Mental Heath Directorate of the Hampshire Partnership Trust. As you can see they remain very concerned about the NICE “Final Appraisal Determination” decision on Alzheimer’s drugs that restricts it only to “moderate” sufferers. Indeed you will see that their letter is headed “NICE abandons Alzheimer’s Disease Patients”. You will further see that they say that “we believe that this announcement effectively abandons many Alzheimer’s disease sufferers and their families and carers to an uncertain and apprehensive future. NICE has stated that drug therapy is only appropriate when the patient has deteriorated. It is unreasonable and unethical to expect clinicians to wait for patients to deteriorate before offering therapy.”

They are also critical of NICE’s recommendation that states that no drug therapy should be offered to patients with severe dementia. They say “This will place clinicians in the invidious position of having to withdraw treatments from patients just as they are becoming more dependent and carers more stressed and at a point at which the treatment (memantine) has been shown to provide significant benefits.”

These experts are also critical of the way that NICE has gone about the decision. They point out that there are no members on the Health Technology Appraisal (HTA) committee who can in any way be described as an “expert” in the treatment, management and care of Alzheimer’s disease patients. They go on to say: “In contrast, NICE has set up a Dementia Guideline Development group (in cooperation with SCIE) which is composed of internationally acknowledged clinical and other experts in AD to assist in developing the dementia guideline. The Dementia Guideline Group has fundamentally disagreed with the decision of the HTA Appraisal and furthermore suggested that if the HTA decision stands it will completely undermine the Guideline which is currently out for consultation.

They are also very critical of the appraisal process. They say that “However, almost all the evidence presented by external experts, patient groups and even that presented by the Department of Health itself appears to have simply dismissed by NICE with no account taken of the huge amount of evidence in favour of the drugs.”

It seems to me particularly cruel that at the moment under the current decision of NICE that patients may be refused treatment because they are not ill enough or because they are too ill. And while, the experts who have written are in agreement that treatments should be considered by an independent body as you can see they do not believe that NICE has properly considered the evidence in the case of Alzheimer’s drugs. I hope therefore that you will press upon the NICE the importance of properly considering this and also consider carefully the results of the appeal – particularly as the experts conclude: “The NICE process appears to have taken no account of the clinical and cost effectiveness data that was supplied for the appraisal committee, or of the extensive considerations requested by the Department of Health, who are a significant stakeholder in the process.”

While in general, NICE is to be welcomed, it seems to me that all this raises serious implications about the way it is operating. I hope that if it comes back with similar advice after the appeals have been heard, that you will have the guts to look seriously at whether it has indeed reached the correct decision and if need be, overturn it.

I look forward to receiving your reply.

Best wishes

Yours sincerely

MIKE HANCOCK CBE MP