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Westminster Hall

Wednesday 4 July 2001

[Sir Michael Lord in the Chair]


Motion made, and Question proposed, That the sitting be now adjourned.—[Mr. Caplin.]

9.30 am

Mr. Paul Burstow (Sutton and Cheam): I am pleased to have the opportunity to initiate a debate on the important subject of care services for people with dementia.

I have some personal experience of the subject, because I have shadowed three carers for the past three years, two of whom were caring for people with dementia. I want hon. Members to imagine what it is like to work an 18 and a half hour day every day with no holiday for five years. One of my constituents, Joyce Evans, has led such a life for the past five years. I met her during last year's national carers week.

I spent a morning with Joyce and her husband, shadowing her and seeing what the role of a carer is all about. To be honest, one cannot do that role justice in a morning, just sitting, talking and listening. Albert has Alzheimer's disease. It has robbed him of his memory and has robbed Joyce of a lifelong companion. They have been married for 41 years. It was a humbling experience to talk to Joyce and learn about her life. She has a wicked sense of humour that seems to keep her going. However, a darker side comes through in her letters, which reveal the struggle of caring for a loved one with Alzheimer's disease. Joyce has to plumb the deepest reserves to keep going. She said that she had been given a lot of support since the diagnosis of her husband's disease. They had received help with applying for benefits, such as attendance allowance. Social services had helped arrange for Albert to attend the Downsday day centre four days a week, and Joyce's doctor had been very supportive, once visiting at 2 am.

The Downsday day centre is crucial for Joyce, giving her space. Since Albert has stopped shaving himself, helpers at the centre do that for him and also give him a bath. Joyce has a strong and supportive family who live locally and a network of friends with whom she can have lunch. Albert is 78. He worked as a gas fitter. When the Shanklin estate in my constituency was built some time ago, Albert was one of the team that did the fitting work. On the day that I visited Albert, he was in a good mood. Joyce told me that, when he is in a bad mood, he tells people to bugger off. Sometimes he may go further than that.

When I arrived at the house, it was locked up like Fort Knox. Joyce explained that Albert was wont to go roaming. The only way to stop him was to ensure that the whole house was securely locked. Her son-in-law came to the rescue and fitted the locks. Extra locks might stop Albert getting out, but they can stop Joyce getting in. On one occasion, Albert locked her in the

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back garden for half an hour, and there was no way out of the garden. It sounds funny now looking back, but it was not funny at the time.

Joyce is eight and a half years younger than Albert, and she needs to be to cope. Five years of solid care have taken their toll. Joyce is physically and emotionally drained. Unless one is a carer, one cannot put oneself in a carer's place and understand the mixture of emotions that are stirred up by caring day in and day out. It struck me that a combination of formal and informal help had made it just possible for Joyce to carry on caring for five years.

Should society expect Joyce to carry on caring? That is fine if that is what she wants to do. However, it is wrong if it is out of a sense of obligation, and because the alternative is degrading and unacceptable. Surveys show that most of us want to carry on living in our own homes for as long as possible, which I support. We must make sure, however, that the unsung heroes such as Joyce do not shoulder an unbearable burden. That is the reason why I chose this topic for debate.

Happenstance and good fortune, and the drawing of ballots for the Adjournment debates, have meant that we are debating this subject during Alzheimer's awareness week. This year, Alzheimer's awareness week is based around the theme of everyday matters. I know that that is true from my time shadowing Joyce. Alzheimer's disease is a label that commands fear before sympathy. People with the disease, and those around them, experience social exclusion and isolation.

Research recently published by the Alzheimer's Disease Society shows that 75 per cent. of carers for people with dementia see their friends less often than they used to, and 40 per cent. have less than an hour to themselves each day. Certainly, that is the experience of Joyce and of Lillian, a carer whom I met last year. Lillian powerfully communicated her deep isolation to me one day when, as I was about to leave, she said, "It is nice to have someone to talk to." She did not normally have that.

There are more than 700,000 people with dementia in the United Kingdom. Dementia affects one person in 20 over the age of 65, and one person in five aged over 80. Alzheimer's disease is the most common form of dementia, but there are others. As the population ages, the total number of sufferers will grow, even if drug treatments reduce the prevalence of the illness. The combination of mental frailty and physical disability makes those who are affected by some form of the disease vulnerable. As dementia progresses, sufferers require increased care and specialist support.

I do not intend to caricature the Government's record on dementia, because there have been some achievements. The national carers' strategy and the national service framework for older people are two examples of that. There is much common ground between the political parties on what we must achieve for people with dementia and their carers. However, I question the pace of progress and whether the Government's thinking is informed by adequate ambition and urgency.

In January 2000, the Audit Commission published a report entitled "Forget Me Not—Mental Health Services for Older People". The Audit Commission reported a massive disparity in the funding provided for

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services for older people with mental health problems; a difference of 8:1 from one area to another. It also found that

The "National Service Framework for Older People" was published 14 months later, in March 2001. Much of its content should be applauded, although it misses the opportunity to secure significant improvements quickly for those who require dementia care. Although the standards set out in the NSF are welcome, they lack the ambition and the practical standards necessary to effect change.

On the time scale, the first milestone for mental health in the national service framework is not due until April 2004. In three years' time, the plans should be drawn up, and the methods of communication and assessment will have been worked out, but what about the services? The Audit Commission has mapped out the key elements that must be in place to improve services. Why cannot April 2002 be a milestone for the completion of the review of local mental health services, referred to as an action point in the national service framework? Surely the cross-cutting audits that were set in motion by the Audit Commission's report "Forget Me Not" should assist that process. There seems to be no reference to that important exercise.

Health and social care services should devise, agree and implement local protocols by December 2002. Why has everything been left to 2004? Action plans, which set out how to develop, and—if necessary—reconfigure home-based, day, out-patient and hospital services, should be drawn up and finalised by April 2003. These milestones must be set in stone before 2004. We must not allow the wholesale reorganisation of the national health service to get in the way of establishing such services as soon as possible. We should take meaningful steps to address the huge funding inequalities identified by the Audit Commission. The need is urgent. There are hundreds of thousands of Joyces and Alberts out there.

Earlier this year, I sent a questionnaire to 150 social services authorities around England. Sixty responded; a 40 per cent. response rate, which is not bad for research of that sort. Some 72 per cent. of social services departments that responded are unable to meet current demand for nursing beds for the elderly and mental ill; 68 per cent. are unable to meet current demand for residential EMI beds; 62 per cent. report shortfalls in provision for older people with challenging behaviour; and 58 per cent. report shortfalls in provision of specialised dementia care. One could say that those findings demonstrate that nothing has changed since the Audit Commission report of January 2000, based on

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auditing work that was done during the previous year. The shortage of specialist care means that vulnerable elderly people and their families are left in limbo; too often the spotlight seems to fall on bed blocking or delayed discharges in the national health service.

The untold story is that of a family struggling to cope with the complex needs and challenging behaviour of loved ones in their own homes. The Government have not adequately addressed that, particularly in the care homes sector. A collapse in confidence has led to large-scale closures of homes, a piecemeal loss of beds and a loss of capacity, which means that areas that need provision no longer have it and others have too much.

There is a need for investment in those specialist services—I am sure that we will hear more about that from the Minister—but the national service framework does not make it clear where those resources are going to come from or what is required locally to ensure that they are targeted to develop necessary new services. The Government cannot rely too much on the development of intermediate care as a substitute for targeted investment in specialist long-term care to deal with dementia. Having given their all, families should not be expected to struggle with intimate caring duties when specialist care is required, nor should vulnerable elderly people be placed in a home that is not properly funded or staffed to meet their needs.

People with Alzheimer's are among the most vulnerable in our society. Their needs are easily ignored. Of the 850 carers of people with dementia surveyed by the Audit Commission, fewer than half were asked whether they needed any help once the diagnosis had been made. Only one third were told how to care for their relatives or how to cope with dementia. The rest were left uninformed and had to work it out for themselves. From my discussions with Lillian, someone who cares for another person with dementia, I learned that her process of navigation through the system was an appalling experience. Ultimately, it took the involvement of voluntary organisations—for example, a carers centre in my constituency—to help her get the benefits she was entitled to, and gain access to the services and support that she and her partner should have had from the outset.

The findings of the Audit Commission were echoed recently by new research carried out by the Carers National Association in its report "You can take him home now". That was published a couple of weeks ago, during national carers week. The Carers National Association found that, over the past three years, consultation and involvement arrangements have deteriorated in discharge planning from hospital. They have not got better.

The association surveyed the issue in 1998, and found in the present survey that it was asking the same questions again, often of the same carers. The perception is that the implementation of guidance that governs discharge planning has got worse, not better. We need to look at the guidance again and ascertain whether it is being complied with across the board in the NHS. The evidence from the Carers National Association's work is that the guidance is, at best, patchy and not being complied with properly in many cases.

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In the course of its research, the Association discovered several cases of carers, looking after someone with dementia, who had been poorly treated. NHS staff did not seem to know either about the diagnosis of dementia or how to communicate with individuals and their carers. Consequently, carers were often ignored and their views were not taken into account. They were not assessed or consulted about the discharge. One carer said that NHS staff had talked only to her mother, who had told them that everything was fine at home. They did not talk to the carer at all. As a result, none of the information about the care package or the day of discharge was passed on to the carer. That caused the carer immense difficulties in trying to deal with the situation.

People with Alzheimer's disease or other forms of dementia can benefit from social and health care support. Early diagnosis and assessment is crucial, as it enables people and their carers to receive the services, information and treatments that they need at the right time.

Although general practitioners are often the first port of call for those concerned about dementia, only 52 per cent. of GPs surveyed by the Audit Commission felt that an early diagnosis was beneficial. Fewer than half felt that they had received sufficient training to help them diagnose and manage dementia. However, early intervention can reduce stress for both the person with dementia and his or her carer, reduce crisis intervention and prevent or delay institutionalisation. Many health professionals previously dismissed dementia as old age, and people were all too frequently told that nothing could be done.

Support for GPs from local mental health professions is vital, as the Audit Commission has emphasised, so why is the national service framework not pressing for that? Why is the framework not expanded, with targets set out?

The Audit Commission correctly identified the fact that many people strongly preferred to be supported in their homes. Home-based assessments and a greater emphasis by commissioners on community-based care were identified as critical factors to tailor services to meet the complex physical and mental health needs that result from dementia. The Audit Commission recommends that the mix of staff deployed should be reviewed locally and re-balanced where necessary. Again, why is the national service framework not driving that forward?

The Minister would be surprised if I did not say that Liberal Democrats remain concerned about the Government's proposals to pay for the nursing care of people in long-term care. That will not fully reflect the health needs of people with dementia. It is essential that people with dementia have their mental and physical health needs met by the NHS and that personal care is free.

Research indicates that the prevalence rates of dementia vary little between residential and nursing home care. The personal social services research unit found that 54 per cent. of individuals admitted to residential beds had mild impairment and that 25 per cent. had severe impairment. Of those admitted to nursing beds, 38 per cent. had mild impairment and 46 per cent. had severe impairment. That means that

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those people with dementia in a residential home may have exactly the same, or possibly even greater, nursing needs than those in a nursing home. However, they will be confronted with a charging regime for the care that they will receive that is entirely different from the regime facing the person in the nursing home. Where is the sense in that? Where is the justice?

I hope that the Minister can confirm that no cash limits will be set on the funds available to cover the costs of nursing care provided under the Health and Social Care Act 2001. There appears to be some doubt about that, on the basis of written answers that I received from the Minister of State, Department of Health, the hon. Member for Barrow and Furness (Mr. Hutton), in the previous Parliament. The figure that he gave was £100 a week. Clarification is needed on whether that was simply a basis for estimating costs and not a cash limit. The sooner that is clarified, the better.

Pages 98 and 99 of the national service framework appear to contain contradictory statements concerning the use of neuroleptics or anti-psychotic drugs. I am sure that the Minister will appreciate people's concern that those drugs are inappropriately prescribed and overprescribed to people with dementia. They have undesirable side effects, which may worsen the symptoms. Their effect is dramatic. Many carers report that, within days of taking the drugs, their relatives are turned into zombies; unable to speak, eat, walk or go to the toilet without assistance. Recent research suggests that older people living in nursing homes receive four times as many prescription drugs as those living at home.

Page 98 states that treatment of dementia will always involve

Dementia has been regarded as taboo for a long time; too long. The needs of dementia sufferers and their carers are met more by chance and personal perseverance than by any systematic planned response by the responsible agencies; something borne out by the Audit Commission and by my personal survey. In many cases, services do not exist in the depth that is required to meet the need. The national service framework is an important step in the right direction. Strides, not steps are needed now, however. I hope that the Minister can indicate how the goals set out in the national service framework can be expanded so that they are delivered sooner rather than later.

9.51 am

Dr. Evan Harris (Oxford, West and Abingdon): I pay tribute to my hon. Friend the Member for Sutton and Cheam (Mr. Burstow) for his assiduous pursuit—not

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only today and for the past few weeks, but in the previous Parliament—of the issue of dementia and care of the elderly in general. He spoke about the happy coincidence of the debate taking place in Alzheimer's awareness week. Coincidence cannot be relied upon, however. One has to be persistent and continually raise these issues. I pay tribute to my hon. Friend for his hard work and persistence in making sure that this issue is always on the agenda for parliamentarians.

It is disappointing to note that no Government or Conservative Back Benchers seek to speak today. In all of our constituencies, there will be not only many people who suffer from Alzheimer's disease and other forms of dementia, but many people caring for those patients, or who have relatives who are being cared for. All the issues raised by my hon. Friend will apply in every constituency to some degree. More people than those present will look to the Minister for specific reassurance on the Government's aims and aspirations and, just as important, how funding and human resources will be allocated to these areas.

My hon. Friend concentrated on care issues. While I agree with everything that he said on that subject, I intend to look at other issues as well. There are questions concerning diagnosis of dementia. We need to ensure that there is early and accurate diagnosis, and that other—more treatable—conditions are identified. We also need to ensure that co-existing conditions that are treatable are accurately and appropriately identified so that treatment can be given and that diagnosis of dementia, in its various kinds, is not just a write-off diagnosis for patients for whom there may be even more active treatments than are available for dementia. It is important that we ensure accurate diagnosis, not only of dementia but of co-existing morbidity.

I want to discuss treatment, both acute and long-term, to say a word or two about long-term care—reinforcing what my hon. Friend the Member for Sutton and Cheam has said—and then to ask the Government a key question about their intentions as regards protecting current and future patients with dementia from the threat of being uninsurable. I have given the Minister advance warning of that question. Many people will be asking what the Government's intentions are; not least those who care for people with dementia and for their interests.

In terms of diagnosis, it is perhaps appropriate that we are holding this debate the day after the British Medical Association annual representative meeting discussed how much time GPs can spend in consultations with patients. The current average consultation time of about four minutes is inadequate for almost any interaction of quality between a patient and his GP. That is true from the patient's perspective of needing to get across what he has to say and, not least, from the point of view of the doctor, who has to take a history, do an examination, make a treatment plan and discuss it with the patients and/or their carers.

The Government's intention to extend the amount of time for consultations is welcome and will be endorsed by patients groups and doctors groups. However, it raises severe questions about whether the targets will distort clinical priorities when taken together with the demand that all general practice patients be seen within

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48 hours where the resources are not available. I am talking not only about funding—although that is important—but, in particular, about staffing resources. Tales were told yesterday of patients who needed time taken with them, and in particular of older people and those with mental illness and their relatives. They have been squeezed out by the huge workload in general practice.

The Government must be clear and honest about whether their aims are deliverable, given the work force issues that we face. There are still inadequate numbers of GPs, despite the increase in the number of medical students being trained for general practice. Inadequate numbers of medical students and junior doctors choose general practice, and a large number of general practitioners are retiring. The elderly and, in particular, those with mental illness and dementia bear the brunt of truncated consultation times and the inadequate opportunity that GPs have to think, take histories, examine, plan treatment and explain all aspects of the care plan to patients and their relatives.

As regards the treatment of the elderly and the mentally ill, it is important that we consider what is happening with the new drugs for dementia. The National Institute for Clinical Excellence has ruled that they are effective, and one can assume that they are effective, at least in clinical trials, from the fact that they have been cleared by the relevant regulatory committees. NICE has ruled that they are cost-effective, although it will be interesting to see what it decides is the unit of cost-effectiveness and the threshold below which it will continue to recommend drugs. It has also ruled that the new drugs are affordable.

It is hard for NICE to decide what is affordable, because it does not necessarily know the Government's full funding plans. It does not know the whole amount, or what the Government plan to earmark for specific treatments. The worry, which my health authority chief executive has expressed to me, is that spending required on the list of must-dos from NICE, which includes the greater prescribing of new drugs for dementia, exceeds the total growth money being given to health authorities. That is true, at least in my health authority.

In most health authorities, spending required on the list of must-dos exceeds the residual growth money that is left after health authorities take account of the other must-dos on which the Government have instructed them to spend. The result is that the extra prescription of cost-effective and apparently affordable medication is funded from within the existing envelope of resources; a euphemism that has replaced the word "budget". Effectively, treatments are being funded from existing budgets. That means that funding is taken from other treatment areas within the envelope of resource for a specific condition to implement the must-dos from NICE, which carry the imprimatur of national guidance.

There is a threat of potential legal action or a sanction from the Government or the Commission for Health Improvement if the guidelines are not followed. Patients wait longer waiting to see consultants, as the planned expansion in specialists able to diagnose and treat the condition is reduced to allocate more funding to the drugs budget. Clearly, not everything will be affordable within the NHS, but it is important that the Government do two things. First, they must be honest

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about that. They would be praised, not criticised, for admitting that rationing exists and that some treatments and management plans from which doctors believe their patients would benefit are not available at the moment within existing resources. Secondly, over and above that, the Government must avoid too much central guidance without adequate resourcing because that will skew clinical priorities.

If sufficient funding is not available to implement those "must-dos", some people might argue that it would be better not to have the guidance because clinical priorities will be distorted and patients who cannot benefit from the new drugs will find that the services available to them are being reduced to fund those new drugs.

The figures that are emerging on the likely cost of full implementation of the NICE guidance—I accept that they come from industry sources—are between £70 million and £120 million. But that funding is not identified and, when other "must-dos" have been paid for, it probably does not exist within the growth money. The problem is difficult, and the Government's intention to put the drugs into the NICE process is well meaning, but what is their answer to the dilemma for an individual health authority that knows that the drugs bill increase will be greater than the amount of growth money that can be afforded for that disease area? Do the Government accept that an increase in prescribing cannot be funded as quickly as they wish or that they should do that even if it means cutting down on other care for patients with dementia?

Another area in which the Government must be clearer and reconsider their position is, as my hon. Friend the Member for Sutton and Cheam said, the funding of long-term care. Can it be right that if two patients with almost identical needs are receiving identical care, one may be means-tested and the other may not simply because of the nature and qualifications of the person providing the care? A registered nurse providing care for someone with dementia will be able to provide that care for free because it will be paid for by the NHS. If the care is provided by someone else who is also competent and able to provide that care, the funding will be based on a means test.

The Home Secretary said in the House on Monday that royal commissions should not be a substitute for Government decision making. However, on long-term care, the Labour Government, with our support, went for a royal commission and then overruled a critical aspect of its recommendations. They said that personal care—even when the need for that care stemmed from a recognised illness, such as dementia—would not be funded by the NHS and that only nursing care would be funded. That poverty of ambition and treatment discriminates against older people and may be one reason why the Government have been reluctant to ensure adequate regulation to cover discrimination against older people. My hon. Friends and I have tried to introduce into health legislation a duty not to discriminate; the Government's opposition to that may have stemmed from their decision to discriminate.

On insurance, a report from the Human Genetics Advisory Committee urged the Government to ensure that insurance companies do not carry out genetic tests unless they are approved, but that was ignored by the Government. The Association of British Insurers has

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admitted that tests are carried out. There is no effective moratorium, unless the relevant Government committee rules that the test is not a valid one. The House of Commons Select Committee on Science and Technology, which examined dementia, recognised that that is a problem and called on the Government to ensure that insurers do not use genetic tests before deciding whether insurance is appropriate.

I want to stress the importance of this matter for patients with dementia or those who feel that they may be at risk of suffering from it in future. There are some risk factors associated with the onset of dementia. It is a multi-factorial disease, so even the carriage of a certain genetic factor is not a good predictor of whether or when one will succumb to Alzheimer's disease; for example, through having a specific apoprotein gene. Nevertheless, long-term care represents a huge market for insurers, especially as there has to be a means test for personal care for people with dementia. Now that the Government have said that such means tests will continue—in a most un-cradle to grave-like way—insurers have recognised that there is a market for insurance in this area. Some companies want to ensure that they gain a competitive advantage over those that are not seeking such genetic tests.

The Select Committee on Science recognised the danger that, consequently, some people might be uninsurable or have to pay over the odds for insurance even when it is possible that they will not develop the illness, and that others may be encouraged to take tests to get a negative result when it is not necessarily to their advantage, from a clinical perspective, to do so. The Committee called on the Government to ensure that there is a moratorium on any testing until the matter can be debated further, and we have not yet had the necessary parliamentary, let alone public, debate.

The Government's response to the report was to ask the Human Genetics Commission to examine the issue, including a public consultation. Having considered dementia, cancer and other conditions, it concluded that the Government must ensure that there is a moratorium on the use of genetic tests. Both the Science and Technology Committee and the Government's own creation, the Human Genetics Commission, have called for a moratorium. All hon. Members present—and, more widely, the public—want to know how the Government intend to implement the recommendations of those reports.

Dementia has an impact on huge areas of Government policy, not only on health care. One of the problems in ensuring that adequate resources are put into the treatment of such illnesses is that cost-effectiveness analyses are looked at too narrowly, which misses the wider picture in terms of the effect on carers and social services budgets. This is such a prevalent condition—and its effects on patients and their carers, family members, friends and society are so profound—that, despite the admirable aims of the national service framework's plan for dementia, the Government must do more work not only on funding but on policy changes in long-term care, on honesty about what can be afforded in the NICE process and on wider issues, such as genetic testing.

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We seek answers to those questions from the new Government, even at this early stage, and I hope that the Minister will provide them.

10.8 am

Mrs. Caroline Spelman (Meriden): Before turning to the subject of the debate, I should like to take this opportunity to express to the Under-Secretary of State for Health, the hon. Member for Pontefract and Castleford (Yvette Cooper), the hope that all goes well with the birth of her baby. I am sure that other hon. Members join me in wishing her a safe and happy delivery.

I declare an interest in the debate that will help hon. Members to understand my viewpoint: my mother died of Alzheimer's disease, so I have close personal knowledge of its impact. I congratulate the hon. Member for Sutton and Cheam (Mr. Burstow) on obtaining the debate in the week that the Alzheimer's Disease Society seeks to raise awareness of the impact of the disease. He says that the timing is a coincidence, but I am sure that he exercised foresight and planning.

Those reading the record of this debate and who take an interest in Alzheimer's will note the comments made about the absence of Back Benchers; I, too, regret their absence. For the wider audience of Hansard and in defence of new Members, I should like to point out that it can take a while to find Westminster Hall at 9.30 am during one's second week in Parliament. As experienced Members recognise, Parliament is to some extent in limbo, but the outside world may not realise that. Absence is not a mark of disrespect to the subject matter.

I congratulate the Alzheimer's Disease Society on its campaign to raise awareness of the disease. I feel passionate about the subject. Alzheimer's is the Cinderella among the major causes of disease and death that afflict us. I urge the Government to accord it the same importance as other diseases in their strategies and to find language that will draw the public's attention to the significance of the disease. The hon. Member for Sutton and Cheam had his soundbite when he said that we need to make "strides not steps". My soundbite is, please make Alzheimer's a sexy subject. There are cancer tsars and drug tsars, so I urge the Government to find a similar way of raising awareness of Alzheimer's.

Immediately after my mother died, I remember my father doing what many bereaved spouses do: he asked "Why?" A friend of mine was rather direct in her reply: she said that the disease was one of the three most common causes of death, which were cancer, cardiac disease and dementia. That was an abrupt way to put it, but it helped my father to understand that my mother's death was not the huge surprise that it seemed to him. The public is largely unaware of how many people are affected by dementia: previously, we heard the statistic that one in five is affected. One reason why the disease is becoming more prevalent is that we are living longer and the disease is largely one of older age. That is all the more reason to make it a sexy subject. I appeal to the Minister to see what she can do.

Others have spoken about drugs that treat Alzheimer's disease—an important aspect of the subject. Regrettably, nothing has so far been found that

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cures the disease, but there are drugs that arrest its progression. The decision made by the National Institute for Clinical Excellence in January this year on the clinical effectiveness of such drugs was helpful, but we Members of Parliament know that it is taking a long time for the effects of that decision to filter through to those suffering from Alzheimer's so that people can get hold of the drugs that arrest the disease.

From various surgery cases, I have recorded a number of excuses for not prescribing such drugs: for example, because of waiting lists, consultants have been allowed to prescribe to only a limited number of people. Most constituents consider it unfair if someone else gets the drugs that they cannot obtain. The development of memory clinics is also being used as a reason not to prescribe the drugs at present; and GPs are being blamed for not referring patients to consultants at a sufficiently early stage. The hon. Member for Oxford, West and Abingdon (Dr. Harris) offered a highly plausible explanation of why GPs are finding it difficult to cope. I was appalled to learn that the average consultation time had been reduced to four minutes, especially in view of the fact that it is quite difficult to diagnose the early onset of Alzheimer's. I doubt that four minutes of conversation would make it easy for a GP to spot the onset.

One reason why I appeal to the Minister to look again at improving access to Alzheimer's drugs is that there is a strong public savings argument involved: if an Alzheimer's drug can arrest the progression of the disease, the pace at which the state has to provide additional support and care services to the patient can be slowed. If the Government's concern is the cost of the bill for Alzheimer's drugs, a full cost-benefit analysis covering the benefit of arresting the disease's progression must be carried out. I urge the Minister to do that.

In a local case, a problem in the west midlands caused great concern to my constituents, especially those who suffer or whose relatives suffer from Alzheimer's disease. A drugs trial was carried out under the title "Europe 2000", ostensibly to examine the clinical effectiveness of Alzheimer's drugs; patients could not have access to any of those drugs unless they were prepared to take part in the trial, but those who participated did not know whether they were getting the placebo or the drug. That occurred at a time when the effectiveness of the Alzheimer's drugs involved was fairly well known internationally. Some doctors, caught between patients wanting the drugs and an awareness that they must go on the trial, felt that it was profoundly unfair to experiment with patients in that way. The trial made those of us in the west midlands feel discriminated against.

I want to do something that is, I think, only possible in the early days of a new Government. I appeal to the Minister to consider an idea that might help the Government to find a way out of the postcode lottery of the prescription of drugs such as the Alzheimer's drugs. During the previous Parliament and as part of its manifesto, the Conservative party proposed an exceptional medicines fund, which would involve top-slicing the health budget and setting aside a portion of money for more expensive drugs and treatments, so that NICE's decisions about clinical effectiveness could be implemented with a budget attached. Such a solution

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would also help to solve the problems that multiple sclerosis sufferers have in obtaining beta interferon. One of the Opposition's tasks is to introduce ideas that challenge the Government, and the Government have not minded accepting one or two of the Opposition's ideas. I commend our idea to her as a practical way around the problem of the postcode lottery that afflicts the prescription of Alzheimer's drugs.

As other hon. Members have said, the problem of Alzheimer's is inextricably linked with long-term care provision. It is a sad fact for sufferers of Alzheimer's and other forms of long-term dementia and for the relatives caught up in the progression of their disease that there is a long road to go down. The patient will invariably need much help and residential care, but because Alzheimer's is a degenerative disease, it takes time before that happens—time in which the prospect can become a source of real worry to relatives helping a dementia sufferer. Spouses in particular worry about whether they can afford long-term provision and whether their home might have to be sold to pay for it. Those are the real worries that grip people's minds when a doctor diagnoses the onset of Alzheimer's disease.

I was concerned to read, in the first set of weekend newspapers after the general election, that the Government have changed their mind about nursing care as a component of long-term care. Will the Minister clearly state whether the Government are rowing back from their pre-election announcement about paying for nursing care? In a written reply, the Minister of State, Department of Health, the hon. Member for Redditch (Jacqui Smith), said that the Government had no plans to change their mind, but I have been around here long enough to know that the little phrase "the Government have no plans" is not a cast iron-guarantee that the Government are not going to change their mind. We need to hear that the Government are going to implement their provisions for nursing care within long-term care provision. Alzheimer's sufferers and those who have to help to look after them are anxious to hear about that.

Several helpful pieces of research have been undertaken by the Alzheimer's Disease Society, of which I am sure the Minister is aware. However, since the debate is about care services and provision for sufferers of dementia, I should like to draw her attention to a report produced by the society called "Food for Thought"—a survey of Alzheimer's sufferers that examines the experience of care provision for those who must go into residential care or who are already in hospital. It is shocking to learn that 52 per cent. of respondents were concerned about the quality of food for dementia patients in hospital, 49 per cent. did not think that those with dementia were given enough to drink and 58 per cent. did not feel that enough assistance was provided.

I have already declared my interest in this matter and I shall recount my painful personal experience, which sheds light on the current shortcomings in provision in residential and hospital settings. Because of their mental impairment, patients who have Alzheimer's disease cannot assert their desire for the things that they need. My mother was not eating enough in a residential care setting—I must state straight away that I do not necessarily blame the care home. When Alzheimer's disease is advanced the situation becomes very difficult

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and requires specialist care. It was thought that if I, as a relative, came in to feed my mother, it would help her nutritionally. It is a distressing experience to have to feed one's parent in the way in which one might feed a baby or a toddler. It suddenly occurred to me as I was feeding my mother that the problem was not that the food was unpleasant—it was very nice—but that she clearly did not have an appetite. Then I caught a glimpse of a sore on her mouth and it occurred to me that the problem might be with her teeth. In fact, she had incredible gum disease and decay and was in huge pain, which was why she did not want to eat.

I recount that experience because I fear that it may not be unusual. My mother had reached the point where she could no longer express the pain that she was in. I suspect that the inability of patients suffering Alzheimer's disease to state what they need is often overlooked—one needs to assert oneself in a care setting. This is a plea to the Minister to read "Food for Thought", which is especially relevant in Alzheimer's awareness week. She must encourage those who care for patients with dementia to think about the wider aspects of their patients' well-being such as nutrition and oral hygiene. We all accept that there is currently a crisis in the care homes sector and many of them are going out of business. It is difficult for them to make ends meet and to secure care home assistants. There is competition to employ care home staff, so to ask them to give more training and to spend more is to ask a great deal at a difficult time. However, training is an important aspect of the care that we give to patients suffering dementia.

I also commend to the Minister the report "Dignity on the Ward" by Help the Aged, which also flags up the difficulty that dementia patients experience in hospital. Sometimes it is not until their relatives come in that anyone spots anything amiss. Extra training for the care of patients with dementia is important.

Dr. Evan Harris : Does the hon. Lady accept that when nurses are overloaded and overworked, those who lose out are those who are least able to speak out for themselves and to push for the attention of overworked and overstretched nurses? The Government accept that a heavy workload falls on nurses. It is perhaps as a result of that that cases have arisen of elderly people in hospital, particularly those with mental illness, not receiving adequate nutrition.

Mrs. Spelman : The hon. Gentleman makes a very good point. I would underline it by saying that the vacancy rate for nurses is aggravating that situation. On a geriatric ward where there are four vacancies, it is difficult for the remaining staff who are, in effect, each doing the work of two people to determine that if patients are not eating, it is not because they do not want to eat, but because of a reason or reasons that they have been unable to articulate. The crisis in nursing vacancies means that the nurses who are present are—through no fault of their own—not able to give the level of care that they would like to provide. We should not underestimate the stress that that causes nursing staff: it is not satisfying to go home at the end of the day knowing that things could have been better if only the ward had been properly staffed.

I should like to reinforce the point about carers. We depend very heavily on the good will of those who care for dementia sufferers. Many of them do it well beyond

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the call of duty because they love the Alzheimer's sufferer. They may well carry on caring beyond the point at which it is medically wise either for the patient or for their own health. It may be that the spouse caring for the Alzheimer's sufferer is even older than the patient. In my constituency case load, I have seen many instances in which it would have been wise for residential care to have been provided earlier. Many people go on well past the point at which they should get more help.

The money that the Government have made available to help carers is not necessarily getting through. Will the Minister look at the fact that funds allocated to local authorities to improve provision for carers, in particular respite care, are sometimes arrested at source because local authorities see the money as a way of offsetting the costs of care that they are already providing? Carers on the ground have not experienced a huge improvement in respite care provision. Sometimes those moneys are allocated to the provision of help in the home. In the eyes of the local authority, that is a form of respite care, but I am not so sure. The Alzheimer's Disease Society's report shows that 40 per cent. of carers have less than one hour to themselves each day: help for carers is not getting through properly.

Dr. Harris : The hon. Lady is making a series of important points about carers. One other that she might take up is the fact that an overwhelming predominance of carers, particularly those caring for their parents, are women who take themselves out of the work force to do such caring work either for reasons of tradition, or because they are healthier than the males in the family. The amount of support that is given to carers reflects how society treats women, on whom that burden falls.

Mrs. Spelman : The hon. Gentleman makes a generous point towards the fair sex. Many women find themselves in the caring role because that is what they are brought up to do, and they do it well, but as the number of working women increases, the position becomes more difficult. I am sure that he and other Members know of cases in their constituencies of significant income being lost as the woman retreats from the workplace to meet the demands of close members of her family for whom she feels she has a duty to care. The Government should recognise that duty. It is, in the last analysis, an act of extreme good will, but it does save the state a lot of money. That is why I said earlier that a proper cost-benefit analysis of such provision should take into account the factor of good will. That is very important.

Finally, I emphasise the social exclusion aspect. It begins at an early stage of the onset of Alzheimer's disease: the sufferer may undergo quite a change of personality, with the result that the sufferer and his or her relatives find themselves retreating from their normal social activities. At that stage, quite apart from considering the medical aspects of the disease, it is important to support the relatives of the sufferer through the period of retreat and to help the carer to keep going. Will the Minister look at that?

I concur with the views of the hon. Member for Oxford, West and Abingdon on genetics and insurance. If one has an Alzheimer's sufferer in the family, the genetic link is a cause for concern. I was deeply relieved

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to hear him say that the illness is multifactorial and that a predisposition does not necessarily assert itself. One of the main reasons why insurers are so wary of an indicator of Alzheimer's in a family is the long-term care implications. That brings us back to addressing long-term care provision for those who have a degenerative disease that will, almost invariably, lead to the high costs of residential care.

In closing, I should like to draw the Minister's attention to something of which I am sure she is aware: John Bayley's book about his wife, Iris Murdoch. If anyone has been successful in recent times in making Alzheimer's more of a sexy subject, it must be John Bayley, to whom I pay tribute. Through his book, he has raised awareness of the disease, and has enabled everyone to imagine what it is like if someone in the family is struck by it. He says:

Mr. Nicholas Winterton (in the Chair): Before I call the Minister to reply to this important debate, which it has been fascinating for me to listen to, I should like to wish her well with her pregnancy and hope that she has a safe and happy delivery. Having chaired the Select Committee that undertook a lengthy inquiry into maternity services, I remain interested in the subject even today.

10.33 am

The Parliamentary Under-Secretary of State for Health (Yvette Cooper) : Thank you, Mr. Winterton. I thank you, the hon. Member for Meriden (Mrs. Spelman) and others for their kind remarks. An hour and a half spent in the cool conditions of Westminster Hall has been even more pleasurable than it would normally be.

I congratulate the hon. Member for Sutton and Cheam (Mr. Burstow) on securing this debate, and on his interest in the subject. It is a subject that he has pursued over a considerable time and he has raised these issues in great detail. In Alzheimer's awareness week, I must also pay tribute to the Alzheimer's Society for all the work that it has done to raise awareness of the condition.

The hon. Member for Meriden referred to the importance of raising awareness, or of making Alzheimer's dementia sexy, as she put it. That is a challenge, and it is a tribute to the work of organisations such as the Alzheimer's Society that awareness is growing; more attention is paid to the condition, which affects many people across the country.

Hon. Members have spoken about their experiences, either of family or of constituents. I join the hon. Member for Sutton and Cheam in paying tribute to his constituents Joyce and Lillian and to carers throughout

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the country, who put so much time and energy into looking after loved ones and relatives who suffer from such a difficult condition. None of us should underestimate the dedication and effort of carers; these are difficult to imagine for someone who has not faced such circumstances.

Everyone will agree that we need to do more to support carers in the work and support that they give, often out of love or a sense of duty. They have to bear emotional as well as financial and time pressures. Many suffer from loneliness or guilt and, as a society, we should do more to support them.

As the hon. Member for Sutton and Cheam said, the Government have introduced a national carers strategy, and we have increased the amount allocated to support carers in England through the carers grant from £50 million last year to £70 million this year. That needs to increase, and it will; to £85 million in 2002-03 and to £100 million the following year. That is an important step towards ensuring that up to 75,000 more carers receive a break from their caring responsibilities. However, it is not simply a question of additional resources. We must also ensure that carers are properly involved from the very beginning in the development of services and support for those who are suffering from dementia, as the national service framework made clear.

The national service framework for older people should not relate simply to older people who suffer from particular conditions or diseases. It must relate also to carers, their families and those who support them, whether by involving them in decisions about care or in discussions with NHS or social care staff. At every stage, we need a seamless and integrated service that considers the needs and wishes of carers as well as those who suffer from the condition.

I shall deal with hon. Members' points in turn. We must recognise that we need to raise standards and investment in care for dementia. That process has already begun, but we recognise that wide variations remain throughout the country that we need to tackle over time.

The national service framework for older people that was published in March sets out for the first time national standards and service models of care for health and social services for all older people, whether they live at home or in residential care or are being cared for in hospital. To respond to the point made by the hon. Member for Meriden about cancer and heart directors, we have introduced a national director for older people's services, Prof. Ian Philp, who has already begun work to raise awareness and improve services for older people.

The national service framework has eight standards for four areas: respecting the individual; intermediate care; providing evidence-based specialist care; and promoting an active, healthy life. Standard seven specifically relates to mental health in older people, but many key themes of the NSF are relevant to all older people, including those with dementia.

It is a fundamental principle that ageism should play no part in decisions about treatment and care and that people should never be unfairly discriminated against in accessing NHS or social care services as a result of their age. The second important principle is that people

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should be treated as individuals and be able to make choices about their care. Older people and their carers should receive services that deal with their needs.

The aims of the mental health standard are to promote good mental health in older people, to treat and support those who suffer from dementia and depression and to ensure that older people have access to a fully integrated mental health service that provides effective diagnosis, treatment and support for them and their carers. That means agencies and professions breaking down barriers and working together in the interests of the people whom they serve.

Mrs. Spelman : The Minister's comments about mental health apply across the spectrum for mental health sufferers. Might her comments be an early sign that a Bill on mental health might shortly be introduced?

Yvette Cooper : The hon. Lady will know that matters relating to the timing of Bills are announced by the Leader of the House, and that there are always pressures on parliamentary time.

Improving the prevention, care and treatment of mental problems in old age involves early recognition and diagnosis of the problem, as the hon. Member for Oxford, West and Abingdon (Dr. Harris) said. Accurate and early diagnosis can enable people with dementia and their carers to plan for the future and to make crucial decisions about where and how they want to live and about what sort of care would best suit their needs. The NSF has as a priority the establishment of protocols in primary care for early detection, diagnosis and treatment. A great deal of development work will need to be undertaken with the new primary care trusts, where responsibility will lie.

Systems need to be in place to ensure that health and social care agencies can communicate with each other and agree how and when to refer people with dementia to the appropriate services. To achieve that, we are promoting specialist mental health teams, including social workers and health professionals. Agreed protocols between health and social care will need to be implemented. Those care pathways are set out in the NSF.

Mr. Burstow : Much of my speech rested on that point. Apart from mental health, almost every other standard in the national service framework has milestones before 2004. The Minister rightly identified the need to develop protocols. Will there be earlier milestones or earlier points at which progress will be monitored and reported on?

Yvette Cooper : I intended to deal with the hon. Gentleman's points on the pace of implementation, which is important. I recognise his desire for change to be implemented as fast as possible. The fact that so many milestones will not be monitored until 2004 does not mean that change will not begin before then. It clearly needs to do so. We are urging those involved in health and social care to form local implementation teams to begin planning and developing. In the case of primary care, a lot of development work will need to be done before those milestones are reached.

We carefully considered and consulted on the timing. We must recognise that capacity issues are involved and that, to be effective, the process of reform can take time.

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We need to judge the balance between the right pace of reform, or measuring reform, to ensure that everyone can meet it effectively and has the resources in place, and ensuring that milestones are in place to drive change forward.

Such issues are always difficult. The hon. Member for Oxford, West and Abingdon discussed the problems of constraints on capacity in the NHS and social care and the need to expand that capacity. He said that we must be realistic about what we can deliver and at what pace. A balance must always be struck. The NSF made the right judgment on the basis of considerable consultation about when to start monitoring milestones to ensure that they are implemented and to be realistic about the progress that we believe that the NHS and social care can make over time.

Some other milestones in other areas affect people with dementia. For example, the single assessment process, which is key to delivering person-centred care, was identified as an early priority for delivery and will be introduced by April 2002. That will have a knock-on impact on mental health and dementia, as well as on other areas.

Mr. Burstow : There will be a single gateway and assessment, but not the necessary protocols for the specialist services. Will that not make the establishment of the single assessment worthless for people with dementia? The Minister and her officials should reflect that the milestone says that the plan should be in place by 2004. That is not even talking about the services being reconfigured or about any of the other issues that are dealt with by the Audit Commission.

Yvette Cooper : I do not accept that the implementation of the standard by 2002 will be worthless for people with dementia, because the single assessment is a critical step forward. It will make a big difference to many families who are not experiencing co-ordinated assessment as they should and will improve the care that they receive. Changes must be made across the pathway of care, but we must be realistic about the capacity of the national health service and social care to deliver changes instantly.

Hon. Members cannot have it both ways. They cannot warn on the one hand about demanding more of the NHS than it is able to achieve, given the need to expand capacity but, on the other hand, demand that all the changes, which we agree to be necessary, are implemented instantly. We need to see clear progress, but we must be realistic about the time that that progress will take. Changes are already being made and will be made during the next year to make the single assessment process work effectively, which will benefit those suffering from dementia.

The hon. Member for Meriden mentioned a specific concern about dental services. Dental and oral care will be part of the single assessment process, so I would expect to see dental assessment as part of individual care plans. I am happy to correspond further with her on that if she has more questions. I mentioned already that carers may often need practical support and have physical and mental needs of their own, which must be

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recognised by the specialist mental health teams. An active community health team will find itself addressing the needs of the carer as much as of the patient.

The NSF process means that people will have an individual care plan, shared by all agencies managing their care and treatment, and the assessment of an individual with dementia will take into account the complexity of his or her needs and require frequent review. The assessment will result in care packages that help older people with dementia to live safely at home if possible and may include personal care, care of the home, finance and support for carers. The care packages may also include appropriate technology, such as cooker or door alarms, and we must increasingly look to technology to support people.

Many older people with dementia will need access to specialist mental health services, which means providing a range of services from diagnosis, including the treatment of more complex problems and community and in-patient services for those with clinical need. Again, the emphasis must be on promoting independence of older people with dementia and on supporting them and their carers in the community, whenever that is possible and practical. We are looking to all key stakeholders, including the network of dementia services development centres, to help implement the NSF at the local level.

Hon. Members raised concerns about treatment and, in particular, access to drugs for those suffering from Alzheimer's and dementia. We were pleased to accept the recommendations of the National Institute for Clinical Excellence that Aricept, Exelon and Reminyl should be available on the NHS as one component of management for people with mild to moderate Alzheimer's disease. All health authorities must adhere to that guidance, and we will monitor their performance. In our manifesto, we said that we would ensure that all health authorities would be required to fund the drugs and treatment recommended by NICE.

The hon. Member for Oxford, West and Abingdon is worried that health authorities will be unable to afford that, and the hon. Member for Meriden asked why we could not have a dedicated or top-sliced fund. Health authorities are receiving extra money for NICE recommendations. We anticipated the need for extra resources to fund those recommendations and increases in the drugs budget, and we have acted.

When we announced the extra resources that were going to health authorities throughout the country, we made it clear that the extra money being invested in the NHS had increased from an average of 3 per cent. to 6 per cent. a year in real terms. Some of the extra resources and growth money will go towards funding NICE recommendations.

My problem with a top-sliced fund is that, in the end, the hon. Member for Meriden is talking not about putting more money into the system but about carving the money up differently. It is important that, where we can, we preserve the principle of giving health authorities the flexibility to be able to respond to local need, and they are receiving additional resources to do so.

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Mrs. Spelman : Only 50 per cent. of health authorities currently fund Alzheimer's drugs, so there is quite a long way to go. The difficulty is the same as that with the provision of funds to local authorities for carers; implementation can be patchy around the country. Sufferers of Alzheimer's under a national health service find the postcode disparity difficult to understand.

Yvette Cooper : That is why I agree that the postcode lottery must be addressed, which is what NICE is all about. Health authorities need to fund NICE's recommendations. They do not have the discretion to decide which recommendations they like or dislike; the recommendations need to be implemented. We said that we would take further action to put that beyond doubt and we shall have discussions about how best to take the matter forward. We expect authorities to respond to NICE recommendations, because its very purpose is to tackle the postcode lottery.

Dr. Harris : The Association of the British Pharmaceutical Industry forecasts that the total NICE bill will be between £78.4 million and £123 million, of which about £42 million will fund the Alzheimer's drugs. If a health authority says that its must-do list exceeds its growth money, is that figure wrong? Does the Minister accept that cost pressures in at least some authorities will exceed the amount of growth money, so that cuts, savings and cost improvements will need to be made in other budgets to fund what she has described as a must-do?

Yvette Cooper : Different estimates have been made of the impact of different NICE recommendations, and we are providing health authorities with additional resources to respond to them. Inevitably, however, they face cost pressures in different areas. We are providing additional resources to the health service across the board so that authorities can respond to the recommendations and we shall continue to do so. We accept the need for extra investment and capacity in the NHS, but we must also ensure that national standards are in place. Some authorities have gone faster than others; that created the postcode lottery in the first place.

The hon. Member for Sutton and Cheam is concerned about the NSF's wording. I am sorry if it is misleading and I will be happy to write to him to clarify it. As I understand his point, the wording suggests that there are occasions when certain drugs may be appropriate, but that does not necessarily mean that every patient should be prescribed a particular set of drugs.

The hon. Members for Sutton and Cheam and for Oxford, West and Abingdon asked about nursing and personal care. Those matters were debated during the progress of the Health and Social Care Act 2001. From this October, for the first time, free nursing care will be introduced for people living in nursing homes. In response to the question put by the hon. Member for Sutton and Cheam, let me make it clear that there are no cash limits on nursing care. In response to the hon. Member for Meriden, I do not know where the

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speculative stories in the press came from. The plans will be implemented from next October, with free nursing care available then for people in nursing homes. That will obviously impact on those with dementia as well as others in care homes.

The Liberal Democrats have called on us many times to fund personal care as well as nursing care. I remind them that two thirds of people in nursing homes already have part or all of their care provided. Their proposals would not benefit people on low income. Providing free nursing care and making the system of personal care and support fairer will cost an additional £360 million a year. The Liberal Democrat proposals, however, would require considerable extra funding—about £1 billion—and would neither improve care for anyone nor benefit the worst off. Decisions have to be made about priorities. The Government have made it clear that they want to provide additional support for the ill and to invest in improving care.

The hon. Member for Oxford, West and Abingdon mentioned genetic testing and insurance. I have time to deal with it only briefly. I have grave concerns about this matter and believe that we must protect people against unfair discrimination in insurance. We asked the Human Genetics Advisory Commission for its views. In response to its interim advice and following the report of the Select Committee, we have made it clear that there should be a moratorium until the longer-term issues—about testing, implications for insurance, equity and unfairness—are properly examined.

The Human Genetics Advisory Commission continues to reflect on the issues and is examining what form the moratorium should take, how long it should be for and how much additional work should be done in the meantime. The insurance industry has expressed its willingness to extend a moratorium, but we must ensure that it is implemented. We have clarified our intentions and we shall continue to discuss with the Human Genetics Advisory Commission and the insurance industry how best to implement the moratorium. Technology can provide huge benefits, but we must ensure that it does not cause huge social problems and unfairness.

I hope that I have dealt with the specific issues raised by hon. Members. On the general issue of care home capacity, work is under way with the independent care homes sector, as well as with local authorities. For a long time, people in the NHS and the social care and the voluntary sectors have worked hard to draw up proposals for the national service framework. A huge challenge lies ahead to ensure that the NSF is properly implemented in accordance with the intentions of all those who drew it up.

The fact that so many different organisations were engaged in partnership in drawing up the NSF—which has been welcomed by many people, and which we should be able to implement—is a source of optimism for the future. We need that partnership, as well as a process of investment and reform, to secure improvements in the care of those with dementia. That process is under way. I pay tribute to all those involved in caring for those with Alzheimer's disease.

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