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National Institute for Health and Clinical Excellence (Impact on Carers)

Volume 456: debated on Wednesday 7 February 2007

Before I call the hon. Member for Tunbridge Wells (Greg Clark), I have a statement to make. The hon. Gentleman has asked me to exercise my discretion to allow him to present his motion, in view of the forthcoming judicial review of the process by which the National Institute for Health and Clinical Excellence developed guidance on the use of drugs for treating Alzheimer’s disease. I have agreed to exercise my discretion to allow him to present his motion, but he should be sparing in any direct reference to the specific matter that is subject to judicial review.

I beg to move,

That leave be given to bring in a Bill to require the National Institute for Health and Clinical Excellence to consider the impact of proposed drugs and treatments on carers and patients when assessing their cost effectiveness; and for connected purposes.

I am pleased to see that the Minister of State, Department of Health, the right hon. Member for Doncaster, Central (Ms Winterton) is present. It was very kind of her to come.

This is a simple Bill to correct what I regard as a serious flaw in the way in which NICE evaluates proposed new drugs. At present it is required to balance the benefits to the patient against the costs to the national health service and the personal social services budget. On the face of it that would seem an extremely reasonable way of operating, until we consider that the benefits of many new treatments fall as much on carers as on the patients themselves. The requirement under which NICE operates is too restrictive in that regard.

Let me make clear at the outset that I am not saying NICE should be allowed to breach the public-expenditure constraints under which it operates. Rightly, NICE is there to take a view, given the current level of resources for the NHS. I think, however, that if it were able to take account of the costs and the benefits to the quality of life of carers, a more sensible and rational balance could be achieved.

I have no objection at all to the existence of NICE. I think it essential for the national health service to benefit from an independent body that is able properly to consider and weigh up the costs and benefits of different treatments. But NICE operates under directions from the Secretary of State, and those directions are very clear: it is required to take into account the clinical costs and benefits of proposed treatments. I think we could change that definition, and I think the Secretary of State for Health could change the directions that she gives to NICE.

Let me give an example of an application of the guidance. Consideration was given to licensing a new class of drugs that can treat Alzheimer's disease. The drugs were assessed by NICE, and the most recent judgment was given in November this year in response to various appeals. The clinical effectiveness of the drugs is not in doubt, but they were withheld, and the recommendation is that they should continue to be withheld from people displaying the symptoms of mild Alzheimer's disease. That is not because they were not effective in slowing the progression of the disease, alleviating some of the symptoms and allowing people to have more self-confidence and to engage in everyday tasks. They were held not to be cost-effective, although the cost is about £2.50 a day.

The key part of the appraisal that is missing relates to the impact on the cost of carers. The final appraisal document leading to the most recent NICE judgment states:

“The Committee noted that the relevant NICE guidance on performing economic evaluations states that ‘the evaluation should be conducted from the perspective of the NHS and PSS decision maker… The Committee therefore concluded that it would not be appropriate to include carer costs’.”

One of the principal effects of Alzheimer's disease is on carers for sufferers from that dreadful disease. The evidence is overwhelming. According to a recent survey, 72 per cent. of carers and sufferers felt that their symptoms were improved by the application of these drugs. It is also the case, crucially, that on average an hour a day of hands-on caring time was saved if the drugs were administered.

I believe that the minimum wage is currently £5.35 an hour. If the value of an hour’s caring time were valued at the same rate as the national minimum wage, the benefit to carers would be twice the daily cost of the drugs—and that is leaving aside the effect on patients themselves. It is at least arguable that an evaluation that was allowed to consider the effects on carers might come up with a different conclusion.

I said that the evaluation did not take into account the effect on the quality of life of carers. Of course, that is significant too. In his recent review of social care for the King’s Fund, Sir Derek Wanless described the extra caring burden as producing

“anxiety, depression and psychiatric illness, increased susceptibility to physical illness, lowered social functioning, increased rates of chronic diseases during episodes of caring and general negative impacts on physical well-being”.

The effects on carers deserve to be taken into account, and could well make a difference to the evaluation.

I am not alone in concluding that we need to broaden the scope within which NICE is constrained to operate. As part of its consideration of the appeal, NICE asked five independent experts to comment on the evaluation process. Professor John O’Brien, of the Institute of Ageing and Health at Newcastle university, told NICE:

“The economic model fails to take into account many significant benefits of the drugs, for example reduced carer time in supervising patients with dementia… to use this as the sole basis for decision making in this case remains a fundamental flaw”.

All five experts were of the same view: that the current NICE methodology was flawed.

In his review, Sir Derek Wanless said:

“the burden on informal carers is particularly acute with dementia care”.

That cost, he said, required greater attention. During the last Parliament, the House’s own Health Committee concluded in one of its reports:

“we recommend that NICE should consider the wider societal costs and advantages of particular treatments.”

There are 290,000 people with Alzheimer's disease in England and Wales, more than 500 in each of our constituencies. Everyone knows a family with a member who suffers from that cruel disease, and everyone knows that, devastating though the consequences are for the sufferer, the effects on carers are even more distressing. It is painful enough for people to go through the process of seeing a loved one such as a father, a mother, a husband or a close friend suffering and, before their eyes, becoming a different person from the person they had known all their lives. That is a harrowing experience, the like of which most of us will never go through. However, for the carers of those people there is also a practical effect: their lives are transformed, as they become, effectively, full-time carers.

We owe it to such people, who do heroic work on behalf of all of us by looking after their loved ones, to make sure that their role is recognised and respected in the evaluation of new treatments that come before NICE which can make a difference to Alzheimer’s and many other diseases.

Question put and agreed to.

Bill ordered to be brought in by Greg Clark, Mike Penning, Mr. Jeremy Hunt. Mrs. Jacqui Lait, Mr. Mark Field and Mr. Adam Holloway.

National Institute for Health and Clinical Excellence (impact on Carers)

Greg Clark accordingly presented a Bill to require the National Institute for Health and Clinical Excellence to consider the impact of proposed drugs and treatments on carers and patients when assessing their cost effectiveness; and for connected purposes: And the same was read the First time; and ordered to be read a Second time on Friday 27 April, and to be printed [Bill 59].