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4 Feb 2003 : Column 55WH—continued

Alzheimer's Disease

3.30 pm

Mr. Robert Syms (Poole): First, I pay tribute to my constituent, Mr. Mervyn Richardson, who brought the issue to my attention and who has been campaigning on behalf of his wife, Beryl, who has Alzheimer's. Much of what I shall say is personal to him, but I will make general points.

There is no question but that the three Alzheimer drugs, which were reviewed in 2000 by the National Institute for Clinical Excellence, enhance the cognitive skills of Alzheimer sufferers as well as the quality of life of the sufferers and their carers. It is important to remember the carers, too.

My constituent made a video called "A Sweeter Pill to Swallow—Beryl's Story", which emphasises the improvements that can be achieved. It should be remembered that Beryl started her galantamine—Reminyl—treatment with a mini-mental state examination score of 11. The NICE recommendation is a minimum of 12. By June 2001, within a month of reaching the full drug, Beryl's MMSE score had increased to more than 17. It fell off to 10 in March 2002 and, in accordance with NICE guidance, Beryl was taken off her Reminyl treatment when her cognitive skills fell dramatically.

Beryl was put pack on the Reminyl treatment, at my constituent's instigation, when her skills improved. She was then administered 150 per cent. of licensed dose and she again improved. Her MMSE in November 2002 was recorded as 17. The fact that Beryl was able to contribute to the video made in October 2002 says a great deal about the benefit of the treatment with Galantamine.

All three drugs, Aricept, Exelon and Reminyl, cost about £1,000 per annum, as does memantine—Ebixa. Alzheimer's disease is a major killer in the developed countries; some put it as the third most lethal. My constituent feels strongly that it should be given a much higher priority, as are cancer and heart disease.

All those three drugs inhibit the acetylcholine esterase. In addition, galantamine via the nicotinic receptors enhances the production of more acetylcholine, the brain chemical messenger, on which brain cell to brain cell communication depends. Hence, Galantamine is far more cost-effective than the other two NICE-approved drugs.

In October 2002, a fourth Alzheimer drug, Ebixa, was licensed in the United Kingdom. It works differently from the other three. Ebixa decreases in the brain the level of glutamate, which leads to neuronal disfunction. It has been successfully used in Germany for 10 years and in several other EU states for a varying number of years.

Ebixa is reported to be of value for sufferers with more severe Alzheimer's disease than the other three drugs, and my constituent is concerned that it has not been referred to NICE for consideration. In a parliamentary answer, the Minister of State, Department of Health, the hon. Member for Redditch (Jacqui Smith), made it clear that that would not happen yet.

Monthly Index of Medical Specialties, in announcing Ebixa, does not refer to it having to be prescribed initially by a specialist, as is the case for the three other

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inhibitor drugs. Some 60 per cent. of sufferers benefit from the use of the three inhibitor drugs. For some like Beryl, the improvement is dramatic. Some sufferers who do not benefit may not do so because their carers have not been adequately trained in how to deal with the side effects.

The cost of all four drugs is about £1,000 a year, which is good value for money if it delays the onset of the disease and saves up to £20,000 that may be needed to keep somebody in care. As cancer drugs are prescribed in combination, there is an excellent reason for Ebixa to be prescribed in combination with one of the other inhibiting drugs, especially Reminyl. My constituent would like that to be considered as part of treatment in future.

The problem in Poole—there is the same problem in Bournemouth—is that the primary care trust has declined to prescribe Ebixa because its drug budget is about £1 million overspent. Although Andrew Morris, the chief executive, whom I saw at the weekend, said that a much bigger provision is being made for next year, there is a real problem for many primary care trusts, as the Minister will understand.

My constituent is concerned that mismanagement of drug budgets means that pressure is placed on some more expensive drugs, such as those for Alzheimer sufferers, and their not being delivered. His view is that people on prescriptions should be subject to blood tests to ensure that they are taking the medicine. There is a problem in ensuring that people who pick up repeat prescriptions take the drugs. We all know examples of people who do not. I suppose that there are civil liberty worries about that. Nevertheless, we need to manage the drugs budget much better if we are to provide more expensive drugs to Alzheimer sufferers.

In the case of Alzheimer sufferers, drugs need to be used under the supervision of a responsible carer. Hence, the likelihood of an Alzheimer drug being administered as directed is far greater than for any other drug, especially for an aged out-patient. In many cases, the progressive nature of Alzheimer's leads to incontinence, which is degrading to sufferers and carers. The onset of that can be delayed by the administration of, for example, Reminyl. Incontinence pads are expensive and cost many thousands of pounds. My constituent was concerned to learn recently that Dorset health care trust has an 18-week delay before it can assess whether people should receive incontinence pads. Such delays will cause hygiene problems for sufferer and carer, and there is greater likelihood of depression and, sometimes, suicide.

It is important that drugs are prescribed at the earliest possible stage. In times of obvious economic stringency in the NHS, my constituent fails to understand why primary care trusts are permitted to prescribe Aricept and Exelon when it has been clearly demonstrated that Reminyl has double action, and that its effects are greater and last longer.

It is extremely unreasonable of Poole primary care trust to refuse to allow the prescribing of Ebixa when the signs are that that well-tried drug is effective for those in the far more advanced state of Alzheimer's. Additionally, far too many patients who qualify for inhibitor drugs are experiencing delays in referral by GPs. There are delays in assessments and, if a scan is

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required, the delays are even greater. As inhibitor drugs slow down the onset of the disease, such delays may have a real impact on their performance when they are finally administered.

There is a difficulty with postcode rationing. Hampshire has a different regime from Poole, and there is a worry that people are treated differently throughout the country. If we study diagnosis and the treatment rate for Alzheimer's throughout Europe, we see that France, north America and Spain have a far higher rate of diagnosis and administration of the drugs than us. I wonder whether the disease has high enough priority in the United Kingdom.

My constituent is concerned that he has had a long fight for the drugs that his wife requires. He is a chemist who has a list of qualifications as long as my arm. He knows what he is doing, and he worked for the United Nations for many years. His worry is about not only his case, but the cases of others who have to fight for drugs on behalf of their loved ones. The important point is that the sooner an assessment is made and inhibitor drugs are administered, the better the patient's chance of at least a good 12 months before the onset of more serious problems. We must bear in mind the consequent quality of life for them and the carer as well as the savings for the national health service.

My constituent is extremely keen on the World Health Organisation's comment that every country, no matter what the constraints on its resources, can do something to improve the mental health of its people. The courage and commitment to take the necessary steps are required. He wants to hear from the Minister that that disease has the highest priority, that there will not be postcode rationing, that the drugs that have an appreciable effect in slowing down the disease are being delivered and that we can improve quality of life for people who face trying circumstances, sometimes towards the end of their years. Occasionally, however, young people suffer from Alzheimer's. It is not exclusively suffered by the elderly.

I welcome the support of my constituency neighbour, the hon. Member for Mid-Dorset and North Poole (Mrs. Brooke). I am sure that our constituencies on the south coast have a high proportion of pensioners, that such problems occur regularly and that the Minister's response will be dear to the heart of many of my constituents.

Mrs. Annette L. Brooke (Mid-Dorset and North Poole): I congratulate the hon. Gentleman on securing the debate. The issue is important, because our constituencies contain a high proportion of pensioners.

One of my constituents contacted me today, and I would like to ask the hon. Gentleman whether he has heard of similar cases. She wants her husband to get the best possible care, so she works in a café at lunchtime to earn the £110 a month it costs for drugs that are not available locally. She is heartbroken that those drugs are available in neighbouring areas.

Mr. Syms : The hon. Lady makes a powerful point. As I said—I hope that the Minister responds—the drugs cost about £1,000 a year. Problems can arise if primary care trusts are under budgetary pressures. In such circumstances, people sometimes have to spend their

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own money on their loved ones. One can understand that, but it is difficult and annoying when people see that neighbouring primary care trusts take a different view to theirs.

I have said enough. I have a great regard for my constituent, and for his caring and campaigning for his wife. I hope that the Minister clearly sets out Government policy on the issue.

3.40 pm

The Parliamentary Under-Secretary of State for Health (Ms Hazel Blears) : I congratulate the hon. Member for Poole (Mr. Syms) on securing this important debate. He has raised issues of wide interest and concern to people throughout the country, not just in his own constituency. I am aware of the campaigning work of the hon. Gentleman's constituent, who has produced a video—which was met with some acclaim—that highlights some of the issues, and I pay personal tribute to the work that he has done in caring for his wife.

The hon. Gentleman mentioned the importance of carers and families at the start of his speech. We should all be aware that although such work is often expressed as being a burden, many people care gladly for their families. We must ensure that we put in as much support as we can for people who take on such responsibilities.

Alzheimer's disease affects a large number of people in this country; it involves not only the patients, but their families and carers. Although drug treatment is important—the hon. Gentleman has concentrated on that and I will refer specifically to those issues—care for such patients revolves around a series of health and social care interventions as well as the available medical drugs. It is important that we try to give as much holistic support as we can. Because the disease is so widespread, there is intense interest in new drug treatments that are being developed to alleviate or delay the progression of the disease and which may eventually result in a cure.

It is estimated that there are about 600,000 people with dementia in the UK. About 5 per cent. of people over 65 have dementia, rising to about 20 per cent. of people who are over 80. The number of people who live to a more advanced age is rapidly increasing, so the number of people with dementia is also increasing, and we expect that increase to become significant in the coming years. It is estimated that by 2026 there will be 840,000 people with dementia, rising to 1.2 million by 2050. That is on the horizon, and it will become an area of increasing concern. Many people of advanced years have a wide range of medical conditions, which means that caring for them is a complex task.

It is estimated that Alzheimer's disease causes up to 60 per cent. of dementia cases; the figures that I mentioned earlier are for dementia cases as a whole. Alzheimer's is characterised by a widespread loss of mental function, and features memory loss, difficulties with language, disorientation and, sometimes, a change in personality, which can be difficult to cope with. People with dementia and their carers need high-quality services to ensure effective diagnosis, treatment and wide support.

We recognise the importance of meeting the mental health needs of older people—the hon. Gentleman outlined the World Health Organisation's statement on mental health needs—and that is why we have made it a

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priority. It is one of the eight standards in the older people's national service framework, which shows that it is one of the Government's clinical priorities. The NSF was published in March 2001 and covers a range of issues for older people such as rooting out age discrimination. That is important because age discrimination should not influence the way in which primary care trusts exercise their policies on the prescription of drugs.

The NSF also contains a specific section on mental health care for older people. The standard says that older people with mental health problems should have access to integrated mental health services provided by both the NHS and local authorities which ensure effective diagnosis, treatment and support for them and their carers. That is a wide description of the Government's priority and the way in which requirements should be met locally.

Standard 7 sets out a detailed service model that states what older people with mental health problems are entitled to. It also contains a series of milestones to allow us to monitor progress. They are due to be introduced in 2004, and we are gathering information about what local communities are doing to ensure that they comply with the milestones in the service model. The framework is pretty rigorous and the mental health services that older people receive in the future will not be hit and miss; they should be able to rely on the framework wherever they live.

That is important because the hon. Gentleman made a great deal out of the postcode rationing of drugs, although we were all well aware of that several years ago, before the advent of the National Institute for Clinical Excellence, when postcode rationing of services was just as much of a problem. The introduction of the NSFs will do for services what I genuinely believe that NICE did for new drugs and emerging technologies.

Anti-dementia drugs are only a small element of the range of health and social services that older people with dementia need, but it is fair to say that they are becoming increasingly important. Three main anti-dementia drugs are available; their proper names are donepezil, rivastigmine and galantamine. They are used as part of the treatment for people with mild to moderate Alzheimer's, and although they cannot cure the disease, they can delay the onset of more serious symptoms.

In January 2001, NICE recommended that the three drugs should be available on the NHS as one component of the management of people with mild to moderate Alzheimer's disease. We provided that the NHS should be under a statutory duty to make drugs available after a ruling from NICE, and the statutory duty has bitten on the service. People are entitled to expect the three approved drugs to be available when they are deemed to be clinically suitable. If people with Alzheimer's disease meet the criteria for requiring the drugs, they should be able to access them on the NHS.

We are aware that there has been a steady increase in prescribing since the NICE judgment. When NICE considered the issue, it estimated that the total cost of the three drugs was likely to rise to about £42 million a year, but it would take at least three years to reach that

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level because people would need to go through an assessment and it would have to be determined how the drugs could help with the holistic care of people with Alzheimer's.

Data for 2001–02 indicate that about £13.5 million was spent to meet the cost of dispensing the three anti-dementia drugs as a result of primary care prescribing. Prescribing has continued to increase during 2002–03, although we do not yet have figures for the full year. However, hospitals prescribe a considerable amount of Alzheimer's drugs and that is not included in the PCT prescribing budgets, which means that we do not have the figures on that. We expect prescribing to increase at a steady rate as more PCTs prescribe the drugs. Almost 100 per cent. of PCTs are prescribing the first of the drugs, and about 87 to 95 per cent. are prescribing the other two. Clinicians are finding the drugs an increasingly useful way in which to manage people with Alzheimer's.

The situation is different for the new anti-dementia drug, memantine. It was launched in the UK in October, so it has not been around for very long. Because it is the only drug for moderate to severe Alzheimer's, there is inevitably great interest in its availability. We do not yet have any prescribing data with which to analyse its availability, but we know that some people are obtaining it on the NHS and some are obtaining it privately.

The state of affairs is clear. NICE has yet to assess memantine for clinical and cost effectiveness, so for the moment NHS bodies across the country have to access the publicly available evidence and determine local policies for the drug's use. The same applies to any treatment that has not yet been approved by NICE; that is an established position, and it is for PCTs and clinicians to decide locally on their policy.

We can perhaps anticipate what the hon. Member for Poole will ask next. The question now, obviously, is when will NICE appraise memantine. We are considering including an appraisal of the drug in the next—and eighth—wave of NICE's work. Announcements should be made about that wave in the next few weeks, so hon. Members will not have to wait months for it. Submissions for the appraisal are currently before Ministers, and NICE will then determine its timetable for the next wave. As I say, the drug came on to the UK market only in October, and some five months later, we are considering putting it before NICE for its next wave of work. That is a sign of the importance that the Government attach to the issue.

I recognise that even that period is disappointing for those who think that memantine should immediately be available to all people with moderate to severe Alzheimer's, but we must recognise that there are enormous pressures on the NHS, and particularly on PCTs and their prescription duties. It is therefore essential that we assess the clinical and cost effectiveness of a drug before making it generally available on the NHS. We now have a statutory duty, once a drug has been before NICE, to make sure that we follow through and enforce its decisions.

The hon. Members for Poole and for Mid-Dorset and North Poole (Mrs. Brooke) both mentioned postcode rationing. Before the introduction of NICE, there was a free-for-all as to which patients could obtain which

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drugs. The introduction of NICE has led to a much more rational and coherent system of drug and technology use. I am sure that, as a result of the spending review settlement, both hon. Members' local PCTs will experience a real-terms significant increase in investment over the next three years. That increase will probably be in the region of 7 or 8 per cent. a year for most PCTs.

I recognise that there are still pressures on budgets because PCTs have so much to do, and the expectations of their communities are so great, but, to be fair, hon. Members, should acknowledge that significant real-terms extra investment is going into the NHS at every level and in every community in the country. The Government have decided that it is right to make that investment to make sure that we can get not just drugs, but services and facilities for patients, wherever they may be.

I am pleased to say that, in Poole, the PCT is able fully to implement the NICE guidance on the three Alzheimer's drugs that have already been approved. People can get referrals to the psychiatrist for older people, and are then able to access the drugs, despite the fact that there is immense pressure on Poole's budgets. I am also informed that the PCT has done an excellent job of managing its prescribing, and it provides some very good services.

The hon. Gentleman mentioned the importance that his constituents attach to proper medicines management, and he said that there needs to be good, tight control on which medicines are taken. Obviously, that is an important subject for the Government, both in terms of being cost effective and ensuring that drugs are not wasted, and in terms of ensuring that patients take their drugs properly. One of the biggest reasons for admission to hospital is people not taking their medicines properly and having severe interactions between medicines. That causes extra cost and distress.

I am pleased to say that, in Poole, 82 per cent. of GP practices have implemented annual reviews of medication for people aged 75 and over. GPs sit down with patients, go through all their medicines and see whether the prescription is up to date and which drugs are no longer needed. They actively manage the medicines that people are taking. That is happening throughout the country. Bournemouth PCT now has a multidisciplinary group that covers medicine management. High priority has been given by PCTs to ensuring that medicines are managed extremely carefully so that money is not wasted and patients get appropriate care.

I understand that recent research suggests that we are getting much closer to finding the cause of Alzheimer's disease, and to working out methods of early diagnosis and of preventing its development. It is an exciting time for people working in the field. Although the drugs that are available provide only temporary respite, the future looks brighter than it did a few years ago. The theme of the Alzheimer's Society awareness week this year will be new treatments in the future.

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I wish the society and researchers in the field well in their work. I hope that, over the next 10 years, they will be able to produce more new drugs significantly to improve the quality of life of people with dementia. The new drugs approved by NICE have had a significant effect on the quality of some people's lives and those of their carers. We do not devalue or denigrate that important work. However, when we authorise the use of drugs nationally, we must ensure that we make the right decisions based on proper evidence put forward by NICE and that those decisions can be followed up in every part of the country.

I was interested to hear that the hon. Gentleman's constituent thinks that Reminyl is more effective than the two drugs approved by NICE. I will make further inquiries, because I was not personally aware of that information. There may be other research projects going on to examine the most cost-effective use of the drugs already approved.

It is fair to say that improvements have been made to the care of people with Alzheimer's in the immediate vicinity of the hon. Gentleman's constituency—in the availability of medicines and the health and social care supported by the local council. Those improvements are mirrored in many different communities throughout the country. It may be accurate to say that Alzheimer's was a neglected disease, but as people are living longer, the problem will increasingly become all too apparent to hundreds of thousands of families who may have to live for a long time with Alzheimer's sufferers. Research, good drugs, good support and care for carers will therefore be extremely important.

I am pleased to say that the carer's grant, which was introduced in 1999, was extended in July 2002 for a further three years until 2005–06. During that time, it will more than double to £185 million to provide extended care and 130,000 further breaks to carers. That is a significant step towards recognising the work of carers in looking after members of their family and friends who unfortunately suffer from Alzheimer's. We have also implemented the invalid care allowance, which will be renamed the carer's allowance, to ensure that people have some independence and some financial recompense for their caring work. That will ensure also that there is an individual assessment of the carers' needs, as well as those of the people being looked after.

The framework shows sufferers from the disease and their families that the Government take this work extremely seriously and that we will continue to assess and evaluate each new drug and development. We are also interested in making sure that people have access to the highest quality care on the most equitable basis possible throughout the country. I thank the hon. Gentleman for raising this issue today. I know about the work of his constituent, who has done an extremely good job in caring for his wife in these circumstances. I undertake to ensure that this issue is kept at the forefront of the Government's thinking and that it remains a priority for us.

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