New Dementia Treatments

Philip Hollobone Excerpts

Thursday 11th January 2024 Westminster Hall

[Damian Green]

My right hon. Friend has huge expertise over the entire health field and therefore in this area as well. He is completely right, and I will come on to savings, particularly potential savings in the social care budget as well as the health budget, in a couple of minutes. It is one of the points I want to emphasise to the Minister.

To return to the treatments, the Medicines and Healthcare products Regulatory Agency has already started consideration of lecanemab and donanemab—I wish treatments had more pronounceable names—two very important breakthrough drugs, and I believe a final decision is expected by the middle of this year. Inevitably, at this early stage of the development of drugs in any particular field, there are many more out there. Another 140 drugs are undergoing clinical trials around the world at the moment. They will not all work, but some of them will, so in scientific and research terms, this is genuinely an exciting period in this field.

Perhaps the most significant point I want to make to the Minister is to express the hope that the way in which the system decides whether to approve a drug is fit for purpose for this type of drug. That is genuinely in question and gives rise to the point my right hon. Friend the Member for West Suffolk (Matt Hancock) made about costs. There are inevitable gaps in our knowledge about the efficacy of new treatments in an area where, up to now, there have been no treatments. Much of the usual comparative work one would expect to be done in clinical trials cannot be done in these circumstances, so there is a task for Ministers to make sure that NHS bodies and the industry develop a joint plan to allow these new treatments to be available to the NHS at a reasonable price.

There is also an important specific point that could affect whether the National Institute for Health and Care Excellence gives financial approval to these treatments in the first place. The bulk of the current costs of dementia falls on the social care system, particularly on unpaid carers. Estimates suggest that around £22 billion a year of costs fall on informal or formal social care. The direct costs to the NHS are only £1.7 billion a year—a small fraction of the cost to the social care system. The current NICE assessment process will take into account only the NHS costs, and clearly that could adversely affect a decision about whether drugs are affordable.

Whether the current NICE system provides the proper result for this type of drug and disease would be questionable at any time, but it is particularly questionable when other arms of government are concentrating on getting more working-age people back to work. More than 1 million people between the ages of 25 and 49 are out of work because of caring responsibilities, and some of those will be caring responsibilities for people suffering from dementia, perhaps in its early stages, when we are not using technology well enough to allow people to lead more or less normal lives.

[Mr Philip Hollobone (Kettering) (Con)]

My right hon. Friend is making an excellent speech and a particularly pertinent point about NICE considering only the cost to the NHS. Is that not even more surprising given that NICE stands for “National Institute for Health and Care Excellence”? Clearly, the guidelines need urgent revision.

[Damian Green]

I am delighted to have my hon. Friend’s support. Since the old Department of Health was renamed the Department of Health and Social Care, it has been particularly important that, in all its manifestations, and indeed in all the manifestations of the bodies that report to it, the Department should reflect the treatment of health and social care as equals. That is a wider point that my hon. Friend should not tempt me to; I can go on at great length about it, and do not wish to in this debate.

As I said, caring responsibilities are a significant reason why so many people of working age are not working. I cited the figure for those between 25 and 49, but if we extend the age range up and down, less than a fifth of people who care for someone with dementia are in paid work. If someone is caring for someone with dementia, it is very likely that they will not be in paid work. I am grateful that others support my point that NICE should be instructed to consider the full cost of dementia to social care, as well as the NHS, to arrive at a proper evaluation of the economic case for the new treatments.

The prospect of these drugs becoming available also throws a spotlight on the need for better and, in particular, earlier diagnosis. At the moment, the drugs are effective only in the early stages of Alzheimer’s, and there is nothing like enough capacity for timely diagnosis. The latest NHS figures suggest that more than a third of the over-65s estimated to have dementia do not have a recorded diagnosis at all. There are significant regional variations within that figure. Some areas of the country are much worse: for example, diagnosis rates in Herefordshire and Worcestershire are as low as 53%. There is also evidence that minority groups, including black people and those of south Asian heritage, have higher rates of under-diagnosis. Without an increase in the effectiveness and timeliness of diagnosis, the beneficial effects of the new treatments will therefore be massively reduced.

For the new hopes I am discussing to be realised, we therefore need a revolution in our diagnostic capacity. At the moment, the most effective ways of diagnosing dementia—namely, PET scans or lumbar punctures—are accessible only to 2% of those seeking a diagnosis. The best short-term solution is to increase access to lumbar puncture, which is much cheaper and more scalable than expanding the expensive scanning equipment. Alzheimer’s Research UK suggests that the annual capacity for lumbar punctures should be increased from 2,000 to 20,000 a year. I am conscious that the Government are analysing the responses to the consultation on the major conditions strategy and that dementia is one of the six conditions covered by the strategy. My appeal to the Minister on that front is that, as we do in many cases in health and social care, we think at least as much about prevention as we do about cure.

Given the demographic pressures, it seems unarguable that, if we carry on as we have done since the NHS was created, concentrating almost entirely on treatments while relatively neglecting public health and preventive measures, we are heading for even more difficulties in the long run. But that is a much wider debate. In the specific area of preventing dementia, a number of factors, including hearing loss and high blood pressure, can and should be part of a preventive approach, which would reduce demand for expensive treatments in the long run and, even more importantly, allow people to continue to lead more or less normal lives.

One other point about the new era that we are hopefully entering with these treatments is that, as a country, we are well placed to contribute to the vital research that is needed. We have the scientists and the companies, but too few people are currently aware of the possibilities. Only 2% of people with a dementia diagnosis are currently registered to hear about clinical trials. The total UK share of the current clinical trials for dementia around the world is 7%. I hope that the Government will look at that aspect as part of the overall plan for dealing with dementia, which we are looking forward to.

Before I sit down, I should emphasise that I do not want to be ungenerous or over-critical about the Government’s action in this area. I am conscious that the Government have committed to doubling the funding for dementia research to £160 million by the next financial year, and I also very much welcomed the launch, last summer, of the Dame Barbara Windsor dementia mission; I am glad that the Government have put £95 million behind that. I know, of course, that the Minister and the Government widely recognise the horror of this disease, the fact that it is becoming more widespread and affecting more and more families and the fact that not just more money, but more creative thinking, will be needed to turn the tide.

I want to end on a hopeful note. This generation has the chance to see the end of the terrible situation whereby a diagnosis of dementia is a life sentence of an inevitably long degeneration. This absolutely needs to be a turning point for the millions of people who are touched by this dreadful disease. I hope that the Government and the medical authorities recognise the scale of the opportunity that scientific advance has given to them and all of us. This year could be key to setting the UK on a path to a more hopeful future. I am very confident that the Minister will be determined to lead us on that journey.