HC Deb 28 June 1999 vol 334 cc111-8

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Mike Hall.]

10 pm

Dr. Vincent Cable (Twickenham)

It is a pleasure to introduce the debate, which is essentially concerned with the problem of Alzheimer's disease and the accessibility of drugs with which to treat it. The Minister is well aware of my interest in the subject, as I put an oral question to him recently, which he answered sympathetically, without quite giving the answer that I sought. I have a broader interest in the subject of age discrimination in the health service, or the lack of priority given to medical treatments that apply particularly to the elderly part of the population.

My interest in these matters is supported by substantial groups outside the House of which I know the Minister is aware, in particular Age Concern and the Alzheimer's Disease Society. In many respects I am speaking on their behalf.

There are 700,000 people in the United Kingdom who suffer from senile dementia, about 400,000 of whom suffer from Alzheimer's. Despite their substantial number, sufferers are largely hidden. They do not have a strong voice in the community, in many cases for obvious reasons. Those in the advanced stages of the disease cannot communicate; they do not vote or write. Even those who are not in the advanced stages are not paraded in public by their relatives. Often they are very old.

Alzheimer's is still an embarrassing illness. There are some famous people, including Sir Harold Wilson and Ronald Reagan, who have suffered from the disease, but in general it is not something that society chooses to advertise. Therefore the problems associated with the illness are frequently hidden.

Those who saw a powerful television programme last week on ITV—"Malcolm and Barbara: A Love Story"—saw in a graphic way what Alzheimer's disease does, particularly when it strikes prematurely. The programme described eloquently and movingly how it starts with loss of memory—in this case, a journey down the wrong side of the M 11 signalled the onset of the disease—followed by increasing inability to function, to pay bills or to hold down a job; a medical diagnosis that was wrong—the patient was treated for depression; and then the worsening of the disease.

That was a particularly sad case, involving a highly talented, creative musician in a strong, loving relationship that was put under strain. As the disease advances, people cannot cope any more and lose the capacity to make love. In the case described by the programme, after four years the gentleman had to go into a home, which is where most sufferers finish.

A few days ago I encountered a rather similar case in my surgery—a 51-year-old man who had been through most of that progression and faced all those problems, with the additional problem of poverty. In the early stages of Alzheimer's, people lose the capacity to hold down a job, and because they have not had a job, they have not made contributions, so they do not qualify for incapacity benefit. In this case the man was on the lower levels of disability living allowance, so he and his partner were facing not merely all the indignity and the pain of Alzheimer's, but poverty as well.

However, this debate is not about the social aspects of Alzheimer's or about benefit. It is about how the NHS deals with it, and specifically about the drugs available to deal with it. Although I am not a medical doctor, I shall summarise the present state of play. There are drugs available—Aricept and Exelon are the most well known—that have, as established by the medical profession, an impact on the disease. They cannot treat all patients—they cannot treat patients in an advanced stage of the disease—but for the early and middle stages of the encroaching disease of Alzheimer's, they have a significant effect in alleviating the symptoms. Because they alleviate symptoms, they ease the psychological pain of the people suffering the illness and the burden on carers.

There is an established medical consensus that that is the case. I am sure that it is known in the Department that two influential academic studies were published in March, which brought much of the research together. I shall summarise the last sentence of the papers, which shows where the research now stands. The first said: Thus, despite variations in local diagnostic and treatment practices, this big multinational study demonstrates that…therapy is an effective and well tolerated symptomatic treatment for patients with mild to moderately severe Alzheimer's disease. The other, which concluded in much the same way, said: This study provides evidence of the efficacy of'— the drug in alleviating the core cognitive and functional symptoms of patients with mild to moderately severe Alzheimer's disease over 6 months. Drugs with demonstrated, scientifically proven results are therefore available.

This brings me to one of my main concerns about the Government's handling of the problem. The Alzheimer's Disease Society is concerned that, despite scientific research, the Government are still carrying out clinical tests in which patients are fed placebos. Clearly, those have no therapeutic benefit. The society has even suggested that medical ethics are being infringed, because it is wrong to carry out experiments that involve feeding patients a placebo when it is known that a drug which alleviates their symptoms is available.

Medical research shows that the availability of drugs brings not merely physical and psychological benefits to patients, but substantial benefits to carers, many of whom have to give up their jobs to struggle with patients in physically and emotionally difficult circumstances. In the terminal stages of the illness, a substantial burden of care is placed on local authorities, many of which have to fund treatment in residential homes.

In those circumstances, one has to question how the national health service deals with the problem. In a parliamentary answer to me several months ago, the then Minister gave a slightly disingenuous reply. He said that the drugs for Alzheimer's disease were prescribed in 99 per cent. of health districts. Technically, that is correct; the 1 per cent. represents Croydon, where there is no NHS prescription at all. The fact remains that, throughout the United Kingdom prescriptions are hard to come by. Indeed, there is an enormous divergence. Apparently, the drugs are freely available in Northern Ireland. That reflects the fact that a liberal spirit operates there, probably because NHS doctors collaborate closely with social services, where the benefits to carers are more clearly apparent.

In many parts of the country, however, carers of Alzheimer's patients have to buy the drugs on private prescription at a cost that ranges from about £70 to £140 a month, which is beyond the means of anyone who is not relatively well-heeled, and certainly way beyond the means of most elderly people.

The question arises about why the Government do not move more quickly to make those drugs available on prescription. Why are those divergences tolerated and why are not the Government more positive in promoting treatments that would benefit patients and their carers, and possibly provide an aggregate saving to society as a whole? One factor that probably lurks behind all this is cost. If one does a mechanical calculation of £1,000 a year, which is the approximate cost to the health service, and multiplies it by 400,000, which is the number of patients, one comes up with the substantial sum of £400 million. In practice, however, the cost is nothing like that because patients in the advanced stages of the disease would probably not respond to the drug and for others it would not be appropriate. In any event, we must set the cost, even if it is substantial, against the benefits that would derive from improved care.

Will the Minister look carefully at how the NHS approaches the problem? I have one specific request, which I put to the Minister in my parliamentary question. He did not answer then, but I hope that he will do so now. What priority will the drugs have under the National Institute for Clinical Excellence system that is being established? Many of us welcomed that system as a rational, scientific way in which to approach priorities in the NHS, but—given the powerful case for treating the drugs that I have mentioned as a priority—it would be reassuring to those dealing with the issue professionally and socially to know that their case will be one of the first to be considered by NICE.

I hope that the Government will take this opportunity to show a willingness to deal positively with some of the medical problems associated with ageing. Many people have an underlying concern that if Alzheimer's disease applied to the young or had a higher profile, like AIDS, much more money would be spent on research and the drugs that I have mentioned would be more easily dispensed. However, the aged are relatively unfashionable and a politically less attractive group and have therefore perhaps escaped the high priority that they otherwise might have enjoyed. I hope that the Minister will be able to reassure me on that point, which would advance the agenda for the victims of Alzheimer's disease.

10.11 pm
The Parliamentary Under-Secretary of State for Health (Mr. John Hutton)

I congratulate the hon. Member for Twickenham (Dr. Cable) on raising this subject tonight and on his thoughtful and well informed comments. I shall try to address his specific questions later in my remarks.

The hon. Member for Twickenham is clearly aware that Alzheimer's disease and other forms of dementia are among the biggest challenges to health and social care both now and into the next century. Some 600,000 people in the UK have some form of dementia, and of those, over half are affected by Alzheimer's disease. About one person in every five over the age of 80 has dementia, but it is not just a disease of old age. It can begin in someone's 30s or 40s with a devastating impact upon their employment, family life and life expectancy. The hon. Gentleman referred to some of those situations.

Although much has been discovered about Alzheimer's disease, for example its genetic basis and the molecular biology of its pathology, there is no treatment yet available to reverse its course or provide a cure. Current treatments are therefore more concerned with reducing its impact, either by treating symptoms or by offering support to patients or their carers.

In considering the treatment of Alzheimer's disease, it is important to think about more than just drug treatments. The hon. Member for Twickenham raised the subject of recently licensed drugs, but before I turn to that issue there are other aspects to consider, including personal care and daytime activities. I know that the hon. Gentleman is concerned about the treatment provided within the NHS, but we should not lose sight of the other aspects of care. We also need to consider psychological treatments, nursing care and general medical support. Patients may require referral to specialist mental health services for diagnostic assessment or advice about medication or other aspects of their care.

I must stress to the hon. Member for Twickenham that the Government take the issue of equality in every area of health care very seriously. The NHS White Paper "The New NHS" sets out proposals for a new national performance framework for the NHS which focuses on areas of performance that really matter. One of those areas is fair access to health services in relation to people's needs, irrespective of geography, class, ethnicity, age or gender. There can be no exceptions to the fundamental rule that the NHS is there to provide services for everybody on the basis of clinical need.

I have heard the complaint, as many other hon. Members probably have, that the NHS is discriminating against people with Alzheimer's by limiting the prescription of certain new drugs. I will come to that issue in a moment, but let me make it clear that if a consultant prescribes those drugs as part of NHS treatment of an older person, they are provided free at the point of use. It makes no difference if the older person is in hospital, at home, or in a care or nursing home: if they are receiving NHS care their drugs are free. Some people may choose to seek private treatment, which may include receiving such drugs on private prescription, but that is a matter between them and the doctor they are consulting.

It is however important to recognise that priority setting is a necessary part of any health care system, as I am sure the hon. Gentleman agrees. It has always occurred in the NHS and will continue to do so. It is right and proper that we set priorities that give the best results for the population as a whole, as well as meeting individual needs.

The national health service always does its best to help to meet people's legitimate health concerns, but the fact is that not all treatments are proven to be effective, and it would be wrong of the NHS to divert resources from treatments that are known to work to fund others that do not. But prescribing is not just about access to treatments; older people may also be at risk from the over-prescription of drugs. All prescribing for older people should be undertaken and monitored very carefully, particularly for those in residential and nursing homes.

People with dementia may be especially sensitive to the side-effects of drugs acting on the nervous system. Neuroleptics can be useful in treating agitation and aggressive behaviour in people with dementia, but such drugs may have serious side-effects, such as sedation, decreased mobility and a propensity to fall and to suffer accidental injury.

Guidance in regard to prescribing and monitoring is available to doctors from such sources as the British National Formulary and the Drugs and Therapeutics Bulletin. The report "Drugs and Dementia", published by Age Concern in 1998, usefully recommends attempting to reduce neuroleptic dosages at least every six months.

Perhaps the main issue raised by the hon. Member for Twickenham was that of drugs. Of course, we all hope that drugs will soon become available to reverse the underlying disease process, and prevent the inexorable decline into dementia; however, no drug is yet available that can be regarded as a cure.

So far, two drugs have been licensed in the United Kingdom for use in the treatment of Alzheimer's disease. The first, to which the hon. Gentleman referred by its trade name of Aricept, was licensed in February 1997, after evaluation by the Medicines Control Agency of all the evidence. That included clinical trials, following the advice of the Committee on Safety of Medicines. The second drug, rivastigmine—known as Exelon—was licensed last year. Both drugs have a similar mode of action, in that they are a symptomatic remedy aimed at boosting levels of one of the neuro-transmitters, or brain chemicals, which are known to be depleted in Alzheimer's disease. Several other drugs of the same kind are well under development, but are still awaiting licences.

Published clinical trials indicate that both donepezil—the generic name for Aricept—and rivastigmine produce modest improvement in memory for some but by no means all patients. There are currently no means of predicting which patients will show a good response. So far, there is a lack of evidence that the response that is seen is clinically significant, or that prescribing either drug is cost-effective. Several reviews, including in the Drugs and Therapeutics Bulletin—the hon. Gentleman might have referred to that—have concluded that the evidence was insufficient to warrant widespread use.

In view of concerns about the possible costs and about potential inequities in prescribing, through the Standing Medical Advisory Committee we have produced guidelines on the use of these anti-dementia drugs. The guidelines recommend that treatment should be initiated and supervised only by a specialist experienced in the management of dementia, that benefit should be assessed at 12 weeks, and that treatment should continue only when there is clear evidence of benefit. Given the deficiencies in evidence regarding clinical benefit and cost-effectiveness, a large trial known as AD2000 is currently under way in the west midlands to examine the issues, including the possible impact of donepezil on the need for respite and other forms of long-term care.

The hon. Gentleman expressed concern about the ethical basis of those trials. I hope I can reassure him: I understand that the trials comply fully with all the appropriate ethical standards.

Several other agents are being evaluated for possible use. Some are drugs with licences for other conditions—for instance, anti-inflammatory agents, or oestrogens—while others are preparations available over the counter, such as vitamin E and gingko biloba. There is modest evidence that each of those may help some patients, but there is currently not enough evidence to recommend widespread prescribing. There is certainly no evidence that any represents a cure for Alzheimer's disease.

The Government are committed to providing support for research into dementia. This year, the Medical Research Council spent over £6 million on such research. It has supported 53 projects in the last three years. In addition, the council has made a number of substantial investments in the area of dementia. A new development grant for research into brain ageing has been awarded in partnership with the university of Newcastle for the examination of the pathology and diagnosis of dementia. That will commence next year. There is also the multi-centre study of cognitive function on ageing, a major 10-year study funded in collaboration with the Department of Health.

In that context, the hon. Member for Twickenham asked a specific question about the work of the National Institute for Clinical Excellence. I will not be able to confirm the institute's early-work priorities in the debate, but I think that an announcement will be made in the near future.

On health services for patients with Alzheimer's disease, the hon. Gentleman and the House will be aware of the Government's commitment to improving the position of older people in general, including those suffering from Alzheimer's disease. This is the United Nations international year of the older person. The Department of Health is actively supporting the year—a grant of £200,000 has been made available to support the campaign's good management and operation.

The Department of Health's policies form part of the Government's overall drive to promote the independence of older people, giving them more say and more control over the services that they receive. We wish to include people, to modernise services, to reduce inconsistency in access to services, to raise standards and to disseminate good practice through evidence and pilots.

The discussion document "Partnership in Action", which was issued last September, set out the Government's proposals to address the barriers that prevent health and social services from working more closely for the benefit of service users. "Partnership in Action" includes proposals to allow health authorities and trusts to pool budgets with local authorities and to delegate their commissioning and providing functions to one another. The proposals in "Partnership in Action" can be seen as part of a much wider Government strategy to address institutional and organisational barriers that prevent individuals from receiving the services that they need.

The national priorities guidance for 1999–2002 sets "promoting independence" as a key objective for health and local authorities. It requires authorities to reduce the risk of loss of independence following unplanned hospital admissions, and to develop prevention, recuperation and rehabilitation services.

Health improvement plans will bring together all local players, including the national health service, social services, education, housing, transport and police, to develop cross-cutting plans to tackle the range of factors that can cause ill health. Alongside those plans, health and local authorities were asked to produce joint investment plans from April this year. The first cover services for older people. Their implementation will contribute to the Government's commitment to promote the independence of older people, including those with dementia.

In autumn 1997, we set out the medium-term agenda for meeting the needs of the vulnerable, including older people who need continuing health care, under the title "Better Services for Vulnerable People." It requires work in three inter-linked areas: delivering effective joint investment plans to meet the continuing and community care needs of local populations; improvement in the content and process of multi-disciplinary assessment of older people in both hospital and community settings; and the development of health and social care services that focus on optimising independence through timely recuperation and rehabilitation opportunities.

We are developing a long-term care charter called "You and Your Services", which is a joint initiative between my Department and the Department of the Environment, Transport and the Regions. It will give a framework for the setting of local standards by authorities to enable users and carers to see what they can expect from health, housing and social care services.

Discussions have been held with users, carers, frontline staff, professional bodies, voluntary organisations and statutory agencies about the possible details of the charter. It was launched for formal consultation last month. Following the consultation, the Government intend to publish it in the autumn, for implementation in April 2000.

The royal commission on long term care has obvious implications for people with Alzheimer's disease. The Government are considering its report with great care. The royal commission's remit spans a wide range of policy areas and Government Departments. Work is already taking place in several areas highlighted in the report, such as a national strategy for carers and the extension of direct payments to older people. The Government now need to spend some time considering the royal commission's proposals in detail.

The hon. Member for Twickenham will be aware of the enormous volume of care provided for people with Alzheimer's disease by families and other informal care givers. Many carers are themselves elderly and many may be infirm or suffering from stress. That is why, in February, we published the national strategy for carers. A new special grant, an extra £140 million over three years, will enable local authorities to provide a wider range of services to support carers.

That will require local authorities to consult carers about their current services and to look into the possibility of greater diversity of provision. My right hon. Friend the Prime Minister has personally demonstrated his support for improving services for carers, as was clearly demonstrated in his foreword to the report.

Finally, and perhaps most importantly, there is the national service framework for older people, which will set national standards and define service models for NHS care of older people; put in place strategies to support implementation of those models; and establish performance measures against which progress within an agreed time scale will be measured.

The national service framework is being developed with the assistance of an external reference group, which brings together health professionals, service users and carers, health service managers, partner agencies and other advocates. The external reference group is backed up by several task groups, including one for consulting older people and one for listening to carers. Among the task groups, one relates specifically to mental health in older people, including people with Alzheimer's disease. We expect to publish emerging findings in the autumn, and to publish the framework itself in the spring of next year.

I believe that the national service framework will be able to drive up the quality of, and reduce variations in, the care received by older people, including those who suffer from dementia. I hope that the national service framework will also make a real difference to the treatment of people suffering from Alzheimer's disease. I am also glad to tell the hon. Member for Twickenham that the director of the Alzheimer's Disease Society is helping us with development of the new national service framework.

Alzheimer's disease remains a terrible affliction, blighting the lives not only of those who suffer from it but of those around them, for whom it can be a form of living bereavement. The Government are committed to improving the health and social care of people with Alzheimer's disease and to providing more effective support to those who care for them. I hope that the hon. Member for Twickenham shares those ambitions, and will therefore feel able to give his support to the initiatives that I have outlined.

Question put and agreed to.

Adjourned accordingly at twenty-six minutes past Ten o'clock.