Motion made, and Question proposed, That the sitting be now adjourned.—[Siobhain McDonagh.]
I am grateful for this opportunity to raise a vital topic. My intention in seeking the debate is not to pretend that nothing is being done; quite the contrary—I want to applaud the work that has been going on in the Department, particularly since the National Audit Office published its report on dementia last year. Consultation on the national dementia strategy and the direction of travel that that signals is very welcome. My interest in the issue does not come from personal family experience— I would not wish that on anyone—but from the contact that I have had with families in my constituency who are living, perhaps I should say struggling, with the consequences of dementia. Those contacts have come about through opportunities provided for me by the local carers centre in Sutton and the local branch of the Alzheimer’s Society; they have certainly done much to teach me about the impact of that terrible disease. I hope that the Minister will see today’s debate as part of the consultation on the strategy and an opportunity to build the consensus that is necessary to deliver and sustain the long-term changes needed to make a difference to people with dementia.
I want to raise three issues. First, I want to explore some of the lessons from past reports and initiatives to improve the quality of dementia care. Secondly, I want to raise some concerns about work force planning and research aspects of the emerging strategy. Thirdly, I want to pose some questions, and make some suggestions, about the review of anti-psychotic prescribing announced by the Minister. The Select Committee on Public Accounts produced a report in January that summed up the challenge:
“Dementia affects over 560,000 people in England and costs some £14 billion a year. Parallels can be drawn between attitudes towards dementia now and cancer in the 1950s, when there were few treatments and patients were commonly not told the diagnosis for fear of distress.”
For the UK as a whole, dementia costs £17 billion a year—more than cancer, stroke and heart disease put together—and we are told that in the next 20 years the cost will more than double.
The Public Accounts Committee and National Audit Office reports are not the first reports to turn the spotlight on dementia. There are plenty of reports, if one digs into the subject. Just eight years ago, the Audit Commission published the first of two reports called “Forget Me Not”. Those reports make salutary reading, because the lack of early diagnosis, the patchiness of provision, the need for better management of complexity and the importance of strategy were all set out in their pages. They show a sad truth about this area of public policy and many others—it is particularly so with respect to the NAO report: often there is nothing new to be said, but what there is to say must be said time and again.
Shortly after the Audit Commission report appeared, the Department of Health published the national service framework for older people. Standard seven in that very welcome document covers older people’s mental health. It states:
“Older people who have mental health problems have access to integrated mental health services, provided by the NHS and councils to ensure effective diagnosis, treatment and support, for them and their carers.”
The NSF was widely welcomed at the time. It was all there: the benefit of early diagnosis; the need to refer to specialist services to confirm diagnosis; best practice advice on dementia care pathways; and the service model. That was in 2001, yet by the time the NAO took a look and published its report in 2007, little had changed substantially. Yes, there were, and are, beacons of good practice around the country; there is no doubt about the fact that some really good, dedicated staff are providing good services and bringing about good outcomes. However, for most of the country, dementia care remains firmly in the dark ages. As the NAO found, less than half of those with dementia receive a diagnosis. Even among those national health service organisations with agreed dementia care pathways, more than half admitted to the NAO that they are not using them.
The draft strategy rightly identifies the need for an integrated approach from diagnosis to end of life. Again, the NSF offered a tool for securing that integration: the single assessment process. Despite a deadline of April 2002 for its introduction, only a minority of NHS organisations are using it. The roll-out appears to have stalled, as it seems that the signals have not been getting through to local decision makers, and that the incentives to change behaviour have been too subtle. The priority that the Minister and the Department of Health have now attached to dementia is essential to achieving the step change that we all want, but if the experience of the past is any indicator for the future it will not be sufficient. It will require national leadership, both political and clinical, so will the Minister take on board the proposal in the NAO report that a national director for dementia services should be appointed to provide national leadership, and that that should be underpinned by networks for dementia, in much the same way as happens for cancer care, to provide clinical leadership at regional level?
My hon. Friend talks about a lack of progress in dementia care; but is he also aware that in some areas there have, in a sense, been backward steps, particularly where behaviour is very challenging, such as the decision by the South West London and St. George’s Mental Health Trust to get out of providing care to such highly challenging patients through its flagship facility at St. John’s, which is to be closed? There is now a desperate search for an alternative provider of such care, and it has been discovered that there is only one possible bidder in the entire area to provide care for challenging patients.
I think that my hon. Friend has made some important points about how reorganising services can cause people a lot of concern, and how that needs careful handling, particularly in the case of people with dementia and those who care for them. A lack of continuity of care is a great cause for concern.
As for trying to get the signals right, changes to incentives, such as the GPs’ quality and outcomes framework, and national tariffs, are required. The quality and outcomes framework awards just 20 points out of 1,000 to dementia. The new strategy for developing the framework, promised by Lord Darzi in his recent review, will be critical to driving change. Can the Minister suggest when the strategy will be published, and how it will connect with the dementia strategy? It will require clear and enforceable standards, backed up by robust and regular inspection. At present, only 28 per cent. of care home places are registered specialist dementia places, despite the fact that 62 per cent. of places are filled by people with dementia—in some cases the figure is as high as 80 per cent. That surely results in some people being inappropriately placed, and the home failing, because of the want of appropriately trained staff, to provide the level of care required.
I congratulate the hon. Gentleman on securing this important debate in an area in which I know he does a great deal of work. He rightly referred to the quality of placements. Will he also explore the even more prevalent problems that face families who struggle to care for people with dementia? They often have the agonising dilemma of wanting to keep their family member with them and provide them with a familiar place to live, while they become increasingly stressed about providing that support and care. Is not there an equal need for evaluation and monitoring of good practice in that respect, to ensure that PCTs and social services provide appropriate support, to help with the reality that those people grapple with?
Thank you, Mr. Hood. Again, that was a very good point, and I guess that I would respond to it by saying that I hope the Minister will tell us something about the read-across from the national carers strategy to the dementia strategy. That must obviously be tailored to the specific circumstances of families who are coping with dementia. The generic strategy, welcome though it certainly is, needs to be tailored in that way—the right hon. Gentleman is absolutely right.
I was going to say something about the Care Quality Commission which will replace the Commission for Social Care Inspection and the Healthcare Commission. It must ensure that all care homes train their staff in the needs of people with dementia. Indeed, it needs to provide training in other settings too—particularly domiciliary care.
Inspection must be more than a response triggered by specific concerns. It must be seen as part of a continuous improvement process across all standards and should be regular. The CQC should also be required to measure routinely the experience and satisfaction of service users and carers in all settings, not just care homes.
In December 2007, the Department of Health published its operating framework for this year. Among its local priorities was the following:
“The Department will shortly be publishing details of the clinical and economic case for investing in services for early identification and intervention in dementia, which PCTs will want to consider when developing local services.”
That was flagged up as a local priority, not a national requirement or even a national priority. Will the NHS operating framework for 2009-10 elevate dementia to the status of a national requirement, or at least to a national priority? Try as I might, I could not find any sign of the promised business case for investing in services. Has it been published?
Getting the traction necessary across the whole health and social care system requires more than incentivising the Department of Health and the NHS to change their behaviour and practice. It also needs the buy-in of the Department for Communities and Local Government, so that local area agreements, the negotiations between agencies that are involved, and the new comprehensive area assessment process can be employed to lever change.
The consultation document states that the proposed development requires work force growth if the new and improved services are to be delivered. Work force planning is a critical and complex matter. At the diagnosis end, is the Minister confident that enough people with the necessary training will be in place to undertake the necessary assessments? Will there be enough neurologists and geriatricians to deal with the huge increase in the number of referrals for specialist diagnosis? The earlier people are referred, the more critical those specialist services will be in achieving a successful diagnosis.
The NAO report found that community mental health teams have an average of 275 people with dementia on their books, compared with the 1,000 whom the prevalence data suggest have that condition. Many teams lack specialists in dementia. An early diagnosis may be made, but what happens afterwards, particularly to support the family, including those caring and coping at home? Information is critical. Signposting on its own, however, is not enough to support carers in particular. They need expert advocacy to help them to access the support and services that they require, which are different at different stages of the disease. One model that I hope will be considered is portage services, which have been developed in children’s services. I am not suggesting that we equate people with dementia with children. Portage services simply provide a model for standing alongside carers and families to help them to manage the complexities of all the agencies that they must deal with. I hope that that can be considered.
I congratulate the hon. Gentleman on securing this debate. On 14 May, I introduced a ten-minute Bill on the management of dementia in care homes. One of its objectives on work force planning and training was to make dementia training, including in the use of anti-psychotics, mandatory for care home staff, as it is not mandatory at the moment. That would be a straightforward and simple step for the Minister to take after the consultation process is complete. Does the hon. Gentleman agree?
I do, and the hon. Gentleman and his colleagues in the all-party group on dementia are to be applauded for their work on the report and the Bill. I hope that it will receive a positive response.
Work force development for care homes, housing and community-based staff are essential, as are support and development for carers. The consultation document suggests that the strategy must be staged over five years to overcome the various work force constraints that I have discussed. Again, if experience teaches us anything, it is that five years is a challenging and ambitious period in which to achieve all that. The same can be said of research. I welcome the intention to hold a summit to consider a planned programme of research. The foundations are in place for a significant increase in research funding, but at present, a quarter of the Department of Health’s £700 million research budget is spent on cancer, compared with just 3 per cent. that is spent on dementia. Total Government spending on dementia research through both the Medical Research Council and the NHS is just £25 million. The UK falls well behind France, Germany, Canada, Australia and the United States of America when it comes to investment in dementia research.
It is not a shortage of good research proposals that is holding us back. The Alzheimer’s Research Trust told me that it rejects two out of three grant applications for want of funds. The summit is welcome, but will the Minister confirm that the Government are willing to commit new money to support more research? The potential is huge. If research resulted in a five-year delay in the onset of dementia, the number of deaths from the disease could be cut in half. Both the work force and research require investment. Has the Minister secured additional resources to implement the strategy, or will any funds allocated later this year come from existing primary care trust and social services allocations? Most of the extra investment needed to make it all happen will fall within the next comprehensive spending review period. I wish him well in winning the arguments for extra investment in dementia care in particular and social care in general.
My final concern is one that I have mentioned in the House over a number of years: the inappropriate and abusive prescribing of anti-psychotic medication. I welcome the decision to conduct an urgent review of prescribing with a view to changing practice, as change is long overdue. Countless learned reports have been written on the subject, guidance was published as part of the NSF in 2001, and the National Institute for Health and Clinical Excellence guidance demonstrates that practical, non-pharmacological alternatives to drugs are available. All those make clear both the benefits and the risks of prescribing anti-psychotics.
The benefits are principally for those who also have psychosis—that accounts for 6 to 10 per cent. of those with dementia—but about 100,000 people are routinely prescribed such drugs to control challenging behaviour. Community mental health teams have a critical part to play in turning that around, but they cover less than a third of those with dementia, and it will take time to grow CMHTs to the point where they have the staff and the competencies to deal with the additional challenges. Above all, the review must map out how to get GPs to change their prescribing practice. Despite all the clinical guidelines and the mounting research evidence of the harm that has been done and is being done by prescribing, GPs carry on prescribing. Securing change is urgent. GPs will be increasingly at risk of prosecution and disciplinary action from the General Medical Council, as the European Medicines Agency’s committee for medicinal products for human use has referred Risperdal, an anti-psychotic, to its harmonisation processes.
The report “Always a Last Resort” dealt with anti-psychotics in detail. Does the hon. Gentleman agree that although anti-psychotics can have a part to play in controlling distressing symptoms such as aggressive behaviour, they are often used, as we heard from witnesses, to treat behaviour that is neither distressing nor threatening, such as restlessness or being vocal? We can all visit elderly people’s homes and see that happening on a daily basis. That is not an appropriate use of anti-psychotics. Staff and GPs too readily go along with the idea that an anti-psychotic prescription is the best way to respond, when it is in fact the worst way. It shortens lives and increases the risk of stroke.
The hon. Gentleman is absolutely right. The report, to which he put his name, says that such drugs should be a last resort. The problem is that in too many places—we do not know the precise numbers; we know only that it happens in too many places—it is often not a last resort but a first. We need to change that behaviour. That is critical to realising the good intentions behind the strategy.
The European Medicines Agency review to harmonise regulation on Risperdal means that the drug will be licensed in the UK for the treatment of behavioural and psychological disturbance, but in a strictly defined subgroup of people with Alzheimer’s disease. Until now, no anti-psychotic drug has been licensed in this country for the treatment of dementia. EU member states that license such drugs for the treatment of dementia stipulate that their use should be limited to a period of no more than three months.
That will have important implications for prescribing and dementia care in this country. For the first time, clinicians will have a licensed drug that will significantly increase the burden of proof, in the context of the GMC’s guidelines on off-licence prescribing. It will become necessary to justify prescribing other drugs than the one that is licensed. If fewer dementia suffers are routinely prescribed anti-psychotic drugs for periods in excess of three months, it will increase the pressure on families and care providers as dementia patients come off the drugs. Once Risperdal is licensed, NICE should undertake an appraisal to determine its clinical and cost-effectiveness. Indeed I hope that the Government will consider that it would be in the public interest if NICE undertook an appraisal of all the anti-psychotic drugs routinely prescribed to people with dementia.
Another driver for change comes from the USA. In June, the US Food and Drug Administration exercised its powers to require manufacturers of traditional anti-psychotic drugs to make safety-related changes to prescribing information, or labelling, to warn about an increased risk of death associated with the off-licence use of these drugs to treat the behavioural problems associated with dementia. In 2005, it made a similar requirement for atypical anti-psychotic drugs. The pressure from Europe for a licensed drug, together with the review, and pressure from the United States, must make us question what the Medicines and Healthcare products Regulatory Agency could do to ensure that we have good safety information on all anti-psychotic drugs in the UK.
Although I welcome the review, it is my view, from all the information that I have seen and lobbying that I have received over the years, that there is a compelling body of evidence to justify action to tackle inappropriate and abusive prescribing. I understand that the review will concentrate on drawing up the action plan needed to change clinical practice, which is not as easy as it sounds. It is easy to say, “Change clinical practice”— many people have been saying it for a long time—but practice remains the same. Elements of any plan should include: a role for the MHRA in requiring safety-related changes to all anti-psychotic drugs labelling; a contribution from the Royal College of General Practitioners and the Royal College of Psychiatrists in drawing up and issuing clearer guidelines and driving behavioural change; the role of the GMC, not in waving a big stick, but in supporting behavioural change and, if necessary, policing unacceptable behaviour; the role of the Healthcare Commission, the Commission for Social Care Inspection and their successors in inspecting prescribing practice—for example by looking at the length of time anti-psychotic drugs are prescribed—and the contribution that clinical governance and audit in PCTs can make. I also hope that we can have a strategy setting out the support and information that families need so that they can ask pointed questions at medication reviews and other times about the appropriateness of the prescriptions offered to them. I think that the voluntary sector can make a huge contribution in raising awareness and by working with the Department of Health and others to move the agenda forward.
I referred earlier to the role of the quality and outcomes framework in signalling change. I hope that as part of the dementia strategy it can be used to reward a change of practice away from pharmacological interventions towards psychological and social interventions. Inevitably, in a debate like this, I have concentrated on those areas where I have concerns, but my purpose today has been to pose some questions and make some suggestions based on past experience. There is much to welcome in the proposed national dementia strategy, and I hope that it becomes the basis for a national consensus that delivers the dignity and quality of life that people with dementia, and their carers, deserve.
I am delighted to speak in this debate under your chairmanship, Mr. Hood, and on such an important topic. I congratulate the hon. Member for Sutton and Cheam (Mr. Burstow) on securing it.
The debate comes as the national consultation proceeds on the dementia strategy and the funding of social care—both key policy aspects. Taken with the updated carers strategy, it is clear that the Government have made such issues a priority, and I feel that there is now a real commitment to finding solutions to the problems. My hon. Friend the Minister is a dedicated and committed champion of the needs of vulnerable people of all ages, and I am sure that the current consultations will result in policy changes that will begin to transform our care system. Issues often move up the political agenda following good campaigns run by organisations such as the Alzheimer’s Society and pressure from MPs from all parties in raising them in the House. Many of those hon. Members are in the Chamber today, and I congratulate them and the society on their work.
Recently the all-party group on dementia reviewed the Alzheimer’s Society report, “The Dementia Tax”, and I spoke at that meeting. Two of the report’s longer-term recommendations were that there must be recognition of the specific heavy burden of care costs carried by people with dementia and their carers, and that the care they receive should be of good quality and at a fair price. The debate on the future funding of social care involves a radical rethink of how we pay for and deliver care, and that debate is obviously at an early stage. Part of the difficulty is that few people think about or plan for the costs of care in the way that many plan for other costs in retirement. The new care funding settlement could look at ways for people to insure against high costs of care and support. Provision for care and support could be made through pensions, private savings, housing equity or through private insurance. However, in the new settlement, when people cannot afford their care the Government will always have a responsibility to step in and ensure that people get the support they need to live their lives.
My hon. Friend is making a very important point, but a third of people over 65 will be suffering from some form of dementia when they die. Is it not likely, therefore, that the premiums for such insurance would be prohibitive, particularly for those with few resources?
For clarification, has the hon. Lady considered how to divide funding between people with immediate needs, those at an intermediate stage—for example, those over 50—and those who are much younger and could still be incentivised to consider their future long-term care needs? How should we approach people who might have had a chance to insure against the contingency of long-term care, but chose not to do so, compared to those who never had that chance? Those seem to be the issues with which she is grappling.
They are indeed the issues, but the debate is at an early stage, and it is right that we consider all such issues as we work through it.
In care homes—the most intensive and costly part of the social care system—more than two thirds of residents have some form of dementia. However, given that only one third of dementia sufferers are cared for in a care home, a large number of people are left dependent on social care at home, much of which is provided by unpaid family carers.
It is important to emphasise the limited and often variable quality of care services for people with dementia. I met a group of carers of people with dementia at an Age Concern drop-in centre in my constituency. Most of the people whom they cared for were still living at home, but using respite care. Those carers were experts on the standard of respite care available locally and were pretty scathing—sadly—about its quality. It is a reflection of the current state of care services that users and carers have low expectations of quality, and that must change. Like other hon. Members, I am sure, I am a firm believer in applying the test of whether we think that a care service would be good enough for our own parents, spouse or partner. We have some big issues to deal with on quality, and if we link them to funding, as has been discussed, I think that people would be more prepared to make a contribution to care costs.
The consultation document for the national dementia strategy makes a commitment on the outcome of early diagnosis and intervention, which I believe is vital in transforming the future of dementia care. Many of the improvements in care for people with dementia are reliant on good-quality early diagnosis, and with medical developments more could then be done at an early stage for those with dementia, which could mean that they can live independently at home for longer.
The NICE guidelines on drug treatment for mild cases, which seem to have hampered NHS funding, need further review. We are talking about a cost of £2.50 a day, which must be weighed against other costs that families incur—it is important that in our debates we weigh up the costs to families.
Our strategies should not deal with the issues separately. I was making the point that we must start to weigh up the costs to unpaid family carers, resulting partly from their reduced work hours. We must also consider the outcome for those with dementia who will spend longer in care homes without that early care.
On care services, a key question is whether we go for local flexibility in provision of services or for setting national standards for care. We had a debate in this Chamber on the future of care a few weeks ago, in which I argued strongly for setting national standards. There are two local authorities and two primary care trusts in my constituency, all of which set different criteria for levels of need and the allocation of care services. It is unacceptable to me, as the MP for Worsley, that local people face those differences. I want a national basic entitlement to care. It is important that our social and community care services develop so that we provide that care early and at lower levels of need, although it would have resource implications that need to be faced.
It is estimated that 2,200 people in Salford have dementia, so there are about 1,000 such people in my constituency. With their carers, they are a significant group. If we want early diagnosis and intervention for people who have dementia, care must be provided earlier, and advice and support must be given both to them and to their carers. The point has already been made that early intervention could and would prevent later costly treatment, as well as—this is important—preserving quality of life for people with dementia and their carers.
There is concern about age discrimination in the provision of treatment and care. The national service framework for older people states that clinical need should be the basis for treatment, regardless of age, but many individuals and organisations in the field of dementia care have given examples that show that is not the case. The equalities Bill will contain a new equality duty that will cover age discrimination. The new law will ban unjustifiable age discrimination such as a doctor failing to investigate a health complaint raised by an older person or not providing treatment simply because of age. Work also needs to be done to tackle the culture of ageism that is built into health services and which affects decisions about paying for care. That difficult issue will need a fundamental change of attitude from health providers.
Recent research commissioned by the Department of Health through the Centre for Policy on Ageing reported different types of ageism in the health care system. Examples include “productivity ageism”—giving priority to young adults because they are more productive—and “health maximisation ageism”, which is used in quality adjusted life years assessments; the greater life expectancy of younger people means that they benefit more. A third type is “fair innings ageism”, which, as the name suggests, compares remaining expected healthy life years to an average and gives a weighting that benefits younger people. Older people deserve good treatment too. If we were to apply the test of whether we think a service or treatment good enough for our parents, we would not apply ageist attitudes when deciding if older people should have the service.
As has been said, it is crucial to recognise the vital role that unpaid family carers play in dementia services. The national carers strategy was launched recently, and carers’ concerns are now considered in relation to health and social care in a new way. I have campaigned, through two private Member’s Bills, for health professionals to identify and support carers, and I will continue to press that case. Early diagnosis of dementia is important, and at that point, the consultant or general practitioner should also identify the patient’s carer and refer them to the support that they will need to cope with their growing caring responsibilities. I think that the hon. Member for Sutton and Cheam said that there are only 20 quality and outcomes framework points for GPs identifying dementia patients, but there are only three QOF points for identifying carers. Surely that should be reviewed.
Does the hon. Lady agree that one of the most distressing aspects of dementia care is how it affects couples? People affected by dementia are often cared for by elderly spouses who might have different problems of their own. There does not seem to be enough emphasis in the system on keeping couples together to face their different health challenges.
That is a key issue. As we press matters such as dignity and support for carers, the issues that couples face have to be taken more into account.
Carers have vital information needs, and we are starting to recognise that they should be offered training, support through carers groups and breaks from caring. The Alzheimer’s Society survey of carers and its recent report showed that only 40 per cent. of the carers surveyed attend a support group, that 29 per cent. have respite care at home and that 29 per cent. have respite care through a care home. That may be due to issues of quality and availability, but given that many carers of people with dementia are at the heavy end of caring, the position must be improved. Carers I have met tell me that they feel as though they are fighting the care system to get what they and the person for whom they care need. The process can be exhausting; it is stressful enough to be a carer without having to fight the system too. To help carers, we must continue to campaign until they have more information, a simple and fairer financial system for funding, and the option of help at home and breaks when needed.
Another issue of concern is the difference between the end of life care offered to cancer patients and that offered to people with dementia. Hospices do a wonderful job; I single out in particular St. Ann’s hospice in Little Hulton, in my constituency, which is a wonderful resource. We should consider whether we can offer dementia patients more dignified end of life care, in the same way as cancer patients are treated at hospices, as well as giving their family members more support.
We should have the national dementia strategy by autumn. With the new national carers strategy, the personalisation agenda launched in “Putting People First” and the review of future funding, we have our best chance for decades to bring about the changes that many of us want in health and social care.
I congratulate my hon. Friend the Member for Sutton and Cheam (Mr. Burstow) on securing this hugely important debate. As everyone in the House knows, he has been extremely active in this area. Indeed, before I took up my current role he used to perform it, and did so with real distinction. I pay tribute to his work; he has shown himself to be a real champion for older people, particularly those who are vulnerable.
The debate is particularly timely as it comes after last week’s dementia awareness week. The issue is of ever greater and more pressing importance in society. Current estimates suggest that more than 700,000 people in the UK have dementia, and that number is expected to rise by more than 1 million by 2025 and 1.7 million by 2051.
As we have heard, dementia affects not only the individuals concerned, but the millions of families involved, and the cost of dementia care is £17 billion a year, of which £14 billion is for England alone. That is more than the cost for cancer, heart disease and stroke combined, which is a shocking statistic. The figure is expected to double within two decades to £35 billion as advances in health care lead to longer life expectancy. However, we are not investing enough in research at a time when more than a third of over-65s suffer from some form of dementia when they die.
I echo my hon. Friend’s comments welcoming the national dementia strategy, which is a big step forward. I think that we all wholeheartedly back the call to bring the issue out of the shadows. He made the useful suggestion that the debate should be part of the vital consultation process that we all believe to be important and welcome. I, too, attended last week’s meeting of the all-party group on dementia, as did the hon. Member for Eddisbury (Mr. O'Brien). On some issues, we all spoke with one voice, and we all paid tribute to the work of the all-party group, the Alzheimer’s Society and other organisations that do so much to push the issue up the agenda. We also acknowledged that the Government have listened, which is creditable; the issue is very much on the table.
The strategy has three core aims, the first of which is to address the lack of understanding about dementia. We have heard, particularly from the hon. Member for North-West Leicestershire (David Taylor), who is no longer in the Chamber, about the need for more comprehensive staff training on how to deal with dementia and related issues. That is crucial, particularly for front-line staff in care homes.
My hon. Friend the Member for Sutton and Cheam highlighted the need for early diagnosis and intervention in dementia cases. The Public Accounts Committee report revealed that two thirds of people with dementia never receive a specialist diagnosis, which is hardly surprising given that the National Audit Office showed that only 31 per cent. of GPs felt that they had received sufficient training to help them to diagnose and manage dementia. The British Medical Association suggested that doctors had less confidence about diagnosing dementia in 2007 than they had in 2004, so the medical profession itself says that more needs to be done.
One problem that has been highlighted is who should take responsibility for the situation. The answer is unclear, and I echo my hon. Friend’s suggestion that we must have specialist experts in dementia. They might be a geriatrician, a GP with a special interest, or a psychiatrist with a speciality in older age, but we all agree on the need for medical specialism in the area.
Improving the quality of care is another priority in the new national dementia strategy, and we all accept that there will be no quick fix. About 62 per cent. of care home residents are thought to have dementia, but less than 28 per cent. of care homes provide specialist dementia care. That issue goes back to training and to the need to introduce qualifications for care home workers—I am aware that has been suggested.
There are concerns about research funding, and I should like to ask the Minister for his thoughts on the current level of funding, because although costs continue to rise, we all accept that there is a huge burden on the system. Nevertheless, only 3 per cent. of the Department of Health’s research budget is spent on finding new ways of preventing and treating dementia, while a quarter of it is spent on cancer research. No one suggests that those issues are not hugely important, but if we are to tackle the huge societal and economic burden of dementia, we must consider increasing the figure. Currently, in real terms, for every £289 spent per cancer patient, only £11 is spent on Alzheimer’s sufferers, so when we consider the huge numbers of people who will suffer from dementia, and its effects on their families, on communities and on society, we see that the issue must be addressed.
It is vital that the work of the third sector—the voluntary sector—continues to be supported. It has done much to push the issue forward, but Rebecca Wood, the chief executive of the Alzheimer’s Research Trust, warns quite bluntly that if the level of under-investment persists, the economic consequences arising from dementia care costs will be “catastrophic”.
My hon. Friend the Member for Sutton and Cheam mentioned anti-psychotic drugs—an issue on which he has campaigned tirelessly. Other Members mentioned it, too, but I know that the issue is dear to my hon. Friend’s heart, and I pay tribute to him for highlighting the scandalous way in which those drugs have been used and, unfortunately, in too many circumstances, are still being used inappropriately as a chemical cosh to suppress rather than to treat. The chilling reality is that, in some cases, the use of those drugs shortens people’s lives when they simply should not be used, or are not being used for an adequate medical purpose. I support his calls for a review by the National Institute for Health and Clinical Excellence—I should be interested to hear the Minister’s comments—on Risperdal and on the general principle. It is extremely important.
I also echo the comments, made particularly strongly by the hon. Member for Worsley (Barbara Keeley), and by the right hon. Member for Oxford, East (Mr. Smith), that we must ensure that there is joined-up thinking between the national dementia strategy and—something else that the Minister has championed—the national carers strategy. I sit on the Select Committee on Work and Pensions, which is examining carers’ roles from the point of view of the responsibilities of the Department for Work and Pensions, and there clearly has to be joined-up thinking. In this debate, we have heard powerful accounts of the reality of life for families, carers and spouses—elderly spouses, who so often care for people with dementia. All of us who have witnessed such situations, either through families or through constituents, know that they are incredibly distressing. People have to care for their loved one while they are grieving for the loss of that person to dementia. It is tragic, and our society must do all it can to support them.
We are all aware of the role that carers play in society, and I am pleased that their importance is being pushed up the agenda, and that their contribution to society is being increasingly recognised. We must acknowledge that carers for dementia sufferers save the social and health services about £6 billion a year, and I hope that we all echo the calls of organisations such as Help the Aged, which want the everyday rights of carers throughout the country to be acknowledged and the care and support system to be fundamentally overhauled, particularly for people with dementia, who have specific needs.
This debate has been very positive, and I look forward to the Minister’s response to the points that my hon. Friend the Member for Sutton and Cheam made. We all agree about how pleasing it is that these issues are firmly on the agenda, that we are talking about them and that things are moving forward. All parts of the House want to be part of the process, and we have to ensure that the results of the consultation and the subsequent national carers strategy transform the lives of people who are affected by that most tragic of conditions, and help their families. I hope that as a society we will then stop brushing dementia under the carpet, and I applaud all the attempts to bring the condition out of the shadows. The fact that we are talking about it today is a very positive step.
I congratulate the hon. Member for Sutton and Cheam (Mr. Burstow) on securing this important debate, which is timely, given the recent review by the all-party dementia group, ably chaired by my hon. Friend the Member for Rugby and Kenilworth (Jeremy Wright), on the use of anti-psychotic drugs; the report on the dementia tax by the Alzheimer’s Society; the consultation on the Government’s national dementia strategy, including the focus on anti-psychotic drugs as a direct result of the work by the all-party group; and, embracing all that, the Government’s consultation on the future of care and support.
In addition, as the baby boomer generation becomes involved in long-term care for older people, and the demographic bulge brings bigger pressures to bear on our health and social care services, the issue is, and will remain, a key area of debate now and during any forthcoming general election, whenever it is called, although that does not necessarily mean that it must be an issue of dispute. Many of us who regularly take part in such debates recognise in our constituents the demand, as well as the hope and expectation, that we can find a consensual way forward.
Many Members fully understand that dementia is a collective term for a range of medical conditions. There are more than 100 different forms of dementia. Alzheimer’s disease is the most common cause, accounting for about 55 per cent. of cases, while vascular dementia accounts for about 20 per cent. The Alzheimer’s Society says that there are about 700,000 people in the UK with dementia, and that about 163,000 new cases of dementia occur in England and Wales each year. It is a life-shortening illness, although another illness is often the main cause of death. However, average life expectancy is unpredictable: the disease can progress for up to 10 years, with average life expectancy being about six years.
From a public policy point of view, that gives the disease particular complexity. About one in three or four people will need long-term care, and of that number about a fifth will have some form of dementia. Furthermore, about a third of those with dementia need institutional care and two thirds of the care home population either has, or will have, some form of dementia. Although the incidence of dementia increases significantly with age, particularly among those aged 85 and over, it is important to note that there are approximately 18,000 people under 65 in the UK who have dementia. I would be interested to hear from the Minister what account will be taken of those people in the dementia strategy.
As we know, in the next 20 years, the number of people aged 85 and over in England is set to increase by two thirds compared with a 10 per cent. growth in the overall population, according to Derek Wanless’s 2006 predictions. That is expected to lead to an increase in dementia occurrence. In August 2005, results from the Medical Research Council’s cognitive function and ageing study showed that improved health and mortality were not likely to guard people against the risk of developing dementia. Although there is no vaccination or cure, dementia is most common at an advanced age, so a fairly modest delay of a few years in the onset of the disease, or in its progression, could mean a significant reduction in the numbers suffering from it.
Under Wanless’s predictions on social care, an estimated £14 billion gross spend in 2006-07 is forecast to double to between £24 billion and £31 billion by 2026, depending on the decisions that we make now. It is likely that the cost of dementia in 2026 will be about £12 billion to £14 billion. At a personal level, the Wanless review estimated that the cost of residential care for the elderly mentally infirm was 14.1 per cent. higher than for “ordinary” elderly residents, and that the cost of nursing care was 4.7 per cent. higher. The report, “The Dementia Tax”, by the Alzheimer’s Society highlighted the unfairness of the situation for people who need care because of dementia, and for their families: dementia it is a medical condition, but invariably it requires social care.
There are wider issues in dementia care than the actuarial estimations about current and future support. It is easy, as we consider the commitment of the British taxpayer to this issue, to forget that we are dealing with individuals such as ourselves and families similar to our own, with all the emotional, spiritual and physical needs that come with our humanity. It is right that we bear in mind those people that we know—friends and family—who have dementia, or who care for someone with it, as we debate these issues.
One big area of work, which has recently given rise to public outcry, is the use of antipsychotic drugs in care settings, which was touched on by all the contributors to the debate, and by those who intervened. I pay tribute to the work of the all-party group on dementia, particularly my hon. Friend the Member for Rugby and Kenilworth for his chairmanship. In its report, “Always a Last Resort”, the group made a key point:
“There are serious concerns that there is widespread inappropriate prescribing, for example, antipsychotics are being used for people with dementia who have mild behavioural symptoms and prescribing is often continued for long periods of time…This is despite the fact that antipsychotics have limited benefit for people with dementia, particularly when prescribed for long periods, and despite the serious side effects associated with their use…Side effects include excessive sedation, dizziness and unsteadiness, which can lead to increased falls and injuries, as well as body rigidity and tremors. Research shows that there is almost a doubling in the risk of mortality and an increase the risk of stroke by up to three times.”
I am therefore glad that the Government have taken up the report’s criticisms in their consultation on the national dementia strategy, and I pay tribute to the Minister for doing so.
Another concern is the closure across the country of care homes for the elderly mentally infirm. There is concern not only about the provision of places to those who need them, but about the provision of places in locations that are convenient for friends, family and, in some cases, spouses, who might well be dependent on public transport to get there. We heard in an intervention about the vital need to emphasise ways in which we can best try to keep couples together. I have tabled parliamentary questions on the matter, but I was told that the Department of Health does not collect the relevant data centrally. I would therefore be grateful if the Minister would consider writing to me, and anybody else who is interested, to outline what information the Department does collect in this area. I was hoping that I might even get a quick nod of agreement from him, but I have not quite seen that happen so far. Perhaps he will address this issue in his response, but it would be helpful if we could at least know what data are collected, or whether he thinks that the Department should start collecting those data centrally, to ensure that we look at the geographic spread of places for the elderly mentally infirm, and whether provision is being lost or maintained, so that we can start examining how we keep families and communities together.
Another key area of policy is telecare, which enables individuals to live independent lives and carry on living in their own home even as their dementia progresses. That is clearly a very large and wide subject, and I think it may be the subject for another debate. However, it is important to mention it briefly, as it is a key issue. Finally, there is the issue of drugs, particularly for the early stages of Alzheimer’s. I pay tribute to all those who have campaigned on this issue, not least one of my own constituents, Leila Potter, who has been engaged for many decades with all the issues arising from caring and support for those with dementia. It is only right that NICE take into account as part of its criteria wider societal costs, such as the earlier requirement for care that would otherwise not be needed if drugs were prescribed at an early stage.
As the Minister knows, for more than a year, we have proposed as policy that NICE should make its judgments taking into account those wider costs. That is important, because it would require a change in NICE’s statutory remit, and thus would require primary legislation. It is something to which my party is committed, and I was very pleased to hear the hon. Members for Sutton and Cheam, and for Leeds, North-West (Greg Mulholland), confirm their interest in, and support for, that policy. I just hope that the Government can tell us, either today or very shortly, that they, too, are minded to support that policy and will introduce the necessary legislative proposal.
The report, “The Dementia Tax”, highlights one of the key questions facing the Government: do they deal with dementia as part of the discussion on care and support, or do they deal with it separately? What is certain is that we would have been in a much stronger position to confront the growing issue of dementia if the Government, having waited for so many years, indicated how they propose to resolve the question of funding long-term care.
I do not need to remind the Minister that the former leader of his party, Tony Blair, said in his 1997 conference speech:
“I don’t want to live in a country where the only way pensioners can get long term care is by selling their home”.
That promise has been around for more than a decade, but only a little has been done about the issue. I think that the Minister would have to admit that the take-up for what has been made available has been paltry. In fact, the present Prime Minister, in launching the consultation, said that
“younger adults are aware that much of their parents’ hard earned housing wealth may disappear…at some point in the future they may have to sell a treasured home to pay for their own care…too many people fear the prospect of selling their homes”.
He therefore continues to ape his predecessor, rather than take the requisite action. The Government rejected the proposals from their own royal commission; they rejected the requests made by Derek Wanless to conduct a review for the Treasury into long-term care; and they rejected his findings when he was able to conduct such a review through the King’s Fund.
When the hon. Member for Birmingham, Hodge Hill (Mr. Byrne) was Parliamentary Under-Secretary of State for Health, he announced a review group, which barely met, to introduce a policy following the comprehensive spending review. The Minister who is with us today gave countless assurances that he was winning his tussles with the Treasury, which were all to no avail when the CSR was actually published. We do not have as yet the results of those consultations, which we hoped would give the Treasury the competence it needs to deliver the “new settlement”, to quote the Minister, that he hoped to announce.
We now have a consultation preceding a Green Paper—in his winding-up speech, the Minister might want to outline the difference between a consultation and a Green Paper. At best, the debate on the future of care and support shows that the Government are still searching for an idea; at worst, it is another attempt to dodge the issue until after the latest date for the next general election. Perhaps, therefore, I could invite the Minister to confirm the Government’s intent to resolve this issue before 2010 or, if the polls are anything to go by, to leave it to others to do so after that date.
I congratulate the hon. Member for Sutton and Cheam (Mr. Burstow) on securing this debate and, perhaps more importantly, on the work that he has done over many years to raise the importance of dementia care within and outside this place. It is now acknowledged as one of the big health and social care challenges of our time, and he deserves significant credit for our having reached the stage that we are at today.
Before I address some of the substantive points made by the hon. Member for Eddisbury (Mr. O'Brien), I would like to point out that we sit in debate after debate in which he simply reels out a narrative about the nature of the challenge, the statistics and the existing situation. He is a spokesman for Her Majesty’s official Opposition, but he never knowingly comes up with a tangible policy solution to any of the major public policy challenges. I do not blame him, because we all know the situation. The shadow Chancellor has made it clear that there are to be absolutely no spending commitments from his party before a general election, but it is rich for the hon. Member for Eddisbury to lecture me when in fact the Opposition do not appear to have any credible policies whatsoever on these issues.
Let me return to the substance of the debate, during which hon. Members discussed the context. Demographic change is one of the biggest challenges that now face our society. Arguably, it is every bit as much of a challenge as globalisation, climate change or fundamentalist terrorism, but rarely does it feature on the list of the top four or five priorities. As people live longer, an increasing number will have long-term conditions. Alongside that, people’s expectations about and aspirations for the quality of care and support that they will receive are radically different from those of the previous generation.
As the hon. Member for Eddisbury rightly said, two thirds of people in care homes have dementia. It is estimated that over the next 20 years, one third of those over 65 at death will have the condition dementia. It is one of the biggest issues that the health and social care system faces. Last summer, I committed the Government to bringing it out of the shadows.
As my hon. Friend the Member for Worsley (Barbara Keeley) rightly said, it is important that we do not simply look for solutions to the challenge presented by dementia, or develop a dementia strategy in isolation. It is incredibly important that we look at the reform agenda in the round. Therefore, when the hon. Member for Eddisbury accuses the Government of a lack of action in such areas, it is because he seems blissfully unaware of the radical reform agenda that the Government have laid out in the past year for health and social care in this country. From 1 April this year, the “Putting People First” transformation agenda, which is supported by more than £500 million of investment, will be rolled out in every local authority area. We are shifting the system to prevention and early intervention, providing universal information and advice, and moving to a system in which the vast majority of people have personal budgets so that they can exercise maximum control and choice over their own care.
Lord Darzi’s report only last week—it coincided with the 60th anniversary of the national health service—has a strong emphasis on the working parties in each strategic health authority, and his national enabling report discusses the importance of mental health issues. The primary and community care strategy that we launched last week deals with the need to look again at the incentives, quality and outcomes framework—QOF—points and so on that inform the behaviour of general practitioners and other health care professionals involved in primary and community care.
As hon. Members have said, we have also embarked on a national consultation on the review of the care and support system. What care and support do people have a right to expect in the 21st century, and what are the respective responsibilities of the state, the family and the individual in that context?
Within the past three or four weeks, we launched the national carers strategy, and, a couple of weeks ago, the consultation on the first ever dementia strategy. In the very near future, we will launch the first ever end-of-life care strategy. I would gently say to the hon. Member for Eddisbury that there has never been as much policy focus, investment of resources and facing up to big challenges as there has been during the most recent period.
I shall respond directly to some of the points that the hon. Member for Sutton and Cheam raised. First, he and other hon. Members mentioned the impact on families. Unless one has met a family who are dealing with dementia, it is difficult to understand the scale of the trauma, anxiety and guilt that the condition causes. I agree entirely with my hon. Friend the Member for Worsley about the test that we should set for health and social care services. I have used it myself. If the care would not be good enough for my mother or father, why should it be good enough for somebody else’s mother or father? That is the test that, over time, we should seek to establish.
As the hon. Member for Eddisbury said, it is right that when we debate these issues, we keep in mind the fact that we are talking about real people and real families in our communities. Dementia no longer affects only a relatively small number of people at the margins. The ageing society and dementia are issues for a growing number of families in our country.
I, too, wish to pay tribute to the Alzheimer’s Society, which the hon. Member for Sutton and Cheam mentioned. It has done a tremendous amount of work to ensure that dementia care is at the fore in public debate.
The hon. Gentleman raised several issues around quality of care. He will appreciate that, having put a document out for consultation, it would be slightly disingenuous for me to prejudge its outcome by directly answering all his questions—that would make a mockery of the consultation. However, I shall address some of his points. We are considering a clinical director of national dementia services. As part of Lord Darzi’s review, the publication of the primary and community care strategy will deal with issues such as the balance of QOF points and primary care.
My right hon. Friend the Member for Oxford, East (Mr. Smith) discussed carer support. The carers strategy that we launched in the past three or four weeks commits a massive amount of additional investment to respite care over the next couple of years. It will be crucial not just to expand the amount of respite care in our country but to get the quality right. We know that for many carers of people with dementia, it is not only accessing respite that is an issue but feeling confident, secure and comfortable that the respite care that they use for their relatives is of sufficient quality.
I agree entirely. Respite care for people with dementia must be safe and secure, and the staff must be skilled and expert, but, like all respite care, it increasingly must be customised to and tailored around the needs of the individual and the family unit. We cannot expect families to fit into a one-size-fits-all offer.
However, I would give a cautionary note about suggesting to the public that “on demand” is always realistic, given the context of available resources. The Government cannot make promises that they cannot deliver. Nevertheless, organising respite in a flexible way around the needs of families is crucial to the care that we want to develop for the future.
The hon. Gentleman asked about the NHS operating framework. His understanding is correct: this year, primary care trusts are expected to prepare, build capacity and start thinking about the issues, based on the strategy. From next year, dementia will obviously receive a much greater focus and priority. I cannot predict the exact words in the NHS operating framework, but I can assure him that the commitments in the final strategy will be reflected in the operating framework. They will also be reflected in all the other measures that will influence local agencies to take dementia seriously. The hon. Gentleman rightly mentioned local area agreements.
The hon. Gentleman also mentioned the work force. He was right to discuss the need to ensure that there are sufficiently skilled professionals, both for accessing universal services and then referral on to more specialist services. That clearly will be an important part of delivering the strategy.
The hon. Gentleman mentioned continuity of care. We need to give serious consideration to the reference in the document to the possibility of creating a network of dementia care advisers in every community. Families want people alongside them who can help them to navigate what can often be a complex, challenging system.
My hon. Friend the Member for North-West Leicestershire (David Taylor), who is no longer present in this Chamber, urges us to have mandatory training in care homes. Of course, we will consider how to improve considerably investment and quality in training. It is crucial, in every care setting, that we improve both entry-level training for professionals and continual professional development.
The hon. Member for Sutton and Cheam mentioned anti-psychotic drugs, which he has done more than any parliamentarian to highlight. I assure him that I will share with him, and with anybody else who wants to see them, the terms of reference of the project that I have established in the Department, under the leadership of Dr. Sube Banerjee. Those terms of reference will be transparent. I urge the hon. Gentleman to work with us on this. It is important that we come up with solutions to this unacceptable situation involving the inappropriate prescribing of drugs or, in some cases, the prescribing of drugs that should not be prescribed for these purposes. That is unacceptable and we must do everything in our power to put a stop to it, but equally we have to get it right. It would be no good coming up with solutions that brought about a series of unintended consequences that led to worse circumstances both for people with dementia and their families and, indeed, for the professionals on the front line. We must ensure that our recommendations are right, but there can be no excuse for the inappropriate prescription of drugs to people with dementia. We would not tolerate it for any other group of people in our health care system. Therefore we cannot tolerate it where it is inappropriate—I say that deliberately—for people with dementia.
The hon. Gentleman also mentioned research. We must have a new look at research and I am committed to doing that. We will have the round table and, when the final strategy is published, we will also be talking about where we go in future with our research investment and research strategy. It is difficult to start comparing the amount that we invest in dementia with the amount that we invest in cancer, because the insinuation is almost that some hon. Members would shift resources from cancer research to dementia research. I do not believe that any hon. Member is advocating for that.
I cannot give a cast iron assurance today. The hon. Gentleman knows that we are in the middle of a comprehensive spending review. Some of the money comes from the Government and some comes from other sources. We have first to be clear about the following matters. What are we spending overall? How does that fit with what is being spent globally? How do we ensure that any expanded investment in research adds value? Where do we secure the resources from? All those questions will have to be answered.
My hon. Friend the Member for Worsley has an impressive track record, since becoming a Member of Parliament, of championing the cause of carers and ensuring that social care has a much greater priority than in the past. She referred at length to the review of care and support. We have now had two high-quality regional engagement, or consultation, events: one in Manchester and one in Leicestershire, where I was yesterday. We have some difficult, challenging issues to resolve. We have to be much clearer about what system people have a right to expect—not just now, but over the next 20 or 30 years, in terms of quality, as my hon. Friend said, flexibility, as the hon. Member for Sutton and Cheam said, and personalisation. Equally, we have to resolve issues, such as the one that my hon. Friend raised, for example, about the balance between what should be available as a national entitlement and what should be subject to local discretion. Unlike the health service, social care has always been a highly devolved service, in terms of its commissioning and so on. A lot of people forget that 75 per cent. to 80 per cent. of social care in England is provided through either the private or the voluntary sectors. My hon. Friend is right to say that the question to be addressed—one of the wicked issues that has to be resolved in terms of the future caring system—is, what should be national and what should be local?
My hon. Friend mentioned quality. Right at the heart of last week’s recommendations by Lord Darzi of Denham was the suggestion that we need to move the health service towards a relentless focus on quality. As my good friend Lord Darzi says, quality should be the organising principle in the future of the NHS. Of course, we must have the same aspiration for social care. Equally, we must look increasingly at the joining up of social care and health care and the wider services that local authorities commission under the well-being banner, as well as at the primary and community health strategy. I am delighted that Lord Darzi’s report reflected that.
My hon. Friend has sponsored private Members’ Bills on the question of the responsibility of general practitioners not only to identify carers but to act on their needs. She is aware that that is referred to in the strategy that we have launched in terms of the future of primary and community care. We must have a renewed look at the role of carers, in the context of an ageing society with more people with long-term conditions. Surely, carers should be given a much greater priority at primary care level. It has to be said that, within the existing QOF framework, some GPs are already doing that in an impressive way. We have to ask some questions about why that is not happening everywhere.
My hon. Friend also spoke about end-of-life care. We will be making announcements soon on the first ever national end-of-life strategy, which will support the fact that, as part of Lord Darzi’s work, every strategic health authority area has now devised a pathway to be implemented in terms of best practice and end-of-life care. The national strategy will be about enabling and supporting that and ensuring that the right level of resources goes into end-of-life care, through a step change with regard to investment and commissioning. We all know that, from the point of view of a civilised society and with regard to a dignity and respect, there is nothing more important than getting end-of-life care right.
The hon. Member for Leeds, North-West (Greg Mulholland) made a constructive, fair contribution to the debate, for which I thank him. He rightly said that carers are one of the greatest family policy priorities that we face. Addressing the needs of carers is not simply the responsibility of the health and social care system or the Department of Health: there has to be a holistic, cross-Government approach. Let me give three examples of the changing nature of families and carers. First, the carer is usually a woman who is struggling to bring up a child and hold down a job while caring for an elderly parent or grandparent. Secondly, consider an older person having to deal with the early onset of dementia in their husband or wife, while being expected to be at the school gate at 3.30 pm on Monday to Friday to collect their grandchild whose mum and dad are at work. Thirdly, the fact that people with disabilities, particularly learning disabilities, not only have full lives, but long lives means that some people are now essentially lifetime carers. Those are examples of why the hon. Gentleman is right to say that we need to recognise and value carers as we have not done in the past. Our 10-year strategy is an important process. The outcomes and the journey are clear, as is the destination that we want to get to, but we have to facilitate an awful lot of changes on the ground so that carers get the two things that they said they want. They want a system that is on their side, rather than one against which they are constantly battling, and the right to a life of their own alongside their caring responsibilities, whether than be the right to work or the right to a decent leisure and social life.
I join the hon. Member for Eddisbury in his tribute to the hon. Member for Rugby and Kenilworth (Jeremy Wright) for the work he has done chairing the all-party group on dementia. Indeed, I pay tribute to the all-party group for perhaps doing more than most all-party groups in respect of undertaking more serious, substantive pieces of work in this area, which have triggered not only public debate, but policy advance as a consequence of that. The hon. Member is absolutely right, sadly, in saying that increasing numbers of people of less than pensionable age—people in their 40s and 50s—are being diagnosed with dementia. It is, of course, important that when the final strategy is published, it truly reflects that as a reality. None of us would want 40 and 50-year-olds to receive respite care in residential and nursing homes where the predominant population is people in their 80s and 90s. Some real issues arise. If there are problems with appropriate diagnosis of people in their 60s, 70s and 80s, we can imagine the undoubted difficulties of diagnosing much younger people who have the early symptoms of what will turn out to be dementia.
The hon. Member for Eddisbury asked me to write to him because I cannot provide him with national information. I was puzzled because I was not sure what he was asking me to write to him about. I think he was talking about the provision of specialist mental health beds, but was he referring simply to geriatric mental health beds in in-patient hospitals, or more broadly to that?
I am happy to provide clarification. The numbers seem to have been reducing, but that seems to have been on a local and regional basis. They are anecdotal, and written parliamentary answers have not been able to shed any light on the volume. The straight answer to the Minister’s question is both: the specialist settings, as well as in hospitals. The main thing is to have the capacity for the elderly mentally infirm to be cared for.
Mr. Lewis: We have made progress, but the problem with debates such as this is that they are always about the default mode and the negative. The sort of progress that we have made means that an increasing number of people are being cared for at home or in residential establishments, and are not being cared for on acute hospital wards, although there are still too may people on acute NHS wards. The correlation between the reduction in the number of acute beds and the needs of people with dementia not being met is not necessarily correct.
I say genuinely that we cannot have political parties and parliamentarians demanding less and less red tape and bureaucracy, and more and more decisions taken by local commissioners responding to the needs of local communities, and then demanding that national Government keep information on everything. The two positions are entirely contradictory. That is why we have some difficulties in those areas. If the hon. Gentleman wants to write to some PCTs or strategic health authorities to see whether they have any hard data that would assist, I advise him to do so. We do not keep that information centrally.
The hon. Gentleman referred to the future of care and support. He continually misquotes me when he talks about wanting a new consensus for a new settlement. I have been saying that for a long time, but I always say that I want a new consensus for a new settlement in terms of the long-term resolution of the future care and support system. I did not use the term in the context of the current spending review period, but the money that has gone into local government, the money that has gone into health, the money that we announced as part of the massive expansion of respite care, and the money that has gone into the transformation agenda for social care is a significant investment. The hon. Gentleman chooses to use only the figure for the money that has gone through local government and is spent specifically by the adult social services department of the local authority. Many more resources are being spent on tacking these issues, and he is aware of that.
In 1999, we introduced the deferred payment scheme, which should prevent many people from having to sell their homes when they go into care. That is something that the Government introduced, and was not available in the preceding 18 years. I agree with the hon. Gentleman that it is not clear how many people have used that opportunity, or whether local authorities have, as they should, offered people that option, and we must explore that.
More fundamentally, the demographic challenges facing us, people’s rising aspirations for what they expect from care and support, and the cost of dealing only with demographic changes means that there are no easy answers or solutions. The challenge is to define clearly what quality of care people have a right to expect, and then to be clear about the respective responsibilities of the state through general taxation, and what we expect from families, employers and communities in providing the care and support systems that people have a right to expect.
This is not just about the work that Wanless did, which focused on the over-65s and mainly on the over-85s. It is about all adults from the age of 18, including disabled people who want the right to live independently, and people with mental health problems or with learning difficulties, who also want full lives and the opportunity to live independently. It is also about the increasing number of people who are not older but who have long-term conditions. Our consultation, the Green Paper and the process are very different from what has been spoken of over the past few years in terms of what is necessary for the future of care and support in this country.
I will not give way.
It remains disappointing that when I constantly ask for a new consensus for a new settlement, Her Majesty’s Opposition do not seem to have one contribution to make to one of the most important public policy debates in this country. As the hon. Gentleman knows, the Leader of the Opposition set up a working party to consider social care. How often has that working party met? We know the answer. It has met hardly ever, if at all. If he wants to correct me, he can write to me with the details of the group that the Leader of the Opposition has established.
As I have said, I am more than happy to confirm that that group met frequently.
While I am on my feet, I ask the Minister now to address a particular policy point. Will he agree to bring forward at primary level the legislation that we have proposed for NICE’s statutory remit to be changed to include the societal cost—that is, the cost of carers—when taking into account the cost and clinical effectiveness of drugs, not least those for early-onset Alzheimer’s?
No, I will not agree to do that during this debate. The issue is ongoing, and one to which we must give serious consideration in the context, as my hon. Friend the Member for Worsley said, of the changing nature of families and the responsibilities that carers increasingly have in our communities. Of course, we must keep that under review, but when we set up an independent body to make incredibly difficult decisions on access to drugs and treatment, it is wrong that politicians seek to undermine it and to pander to short-term political considerations. That is not the way we should go, but I am delighted that Lord Darzi’s report and the new draft constitution on the NHS make it clear that we will end the postcode lottery in access to drugs. When NICE approves drugs, they should be available in every PCT area in every part of the country to every NHS patient as a right. That is a major advance in the NHS constitution that we launched recently.
In conclusion, there is all-party agreement that we must bring dementia out from the shadows. It is one of the greatest challenges facing families in our country, and one of the greatest challenges facing the health and social care system. The Government have demonstrated that they are up to that challenge. We have published a consultation paper on the first ever national dementia strategy, and we will publish the final document in the autumn. The challenge for all of us will then be to ensure that we deliver the strategy so that in every community people with dementia and their families have access to the high-quality support that they deserve.