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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 Alzheimers 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 questionsthat 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 Darzis 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.
Mr. Burstow: One of the comments that is often made to me about respite care is that access almost needs to be on demand. It needs to be there when people need it, not at some point that is convenient for the agencies that provide it.
Mr. Lewis: 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 inappropriateI say that deliberatelyfor 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.
Mr. Burstow: The Minister is right: it would be invidious to suggest such a reallocation. But people who are planning to attend his summit want to know whether there is any new cash on the table that they can make a case for being put into research in future.
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 expectnot 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 addressedone of the wicked issues that has to be resolved in terms of the future caring systemis, what should be national and what should be local?
My hon. Friend mentioned quality. Right at the heart of last weeks 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 Darzis 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 Darzis 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 agepeople in their 40s and 50sare 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?
Mr. Stephen O'Brien: 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 Ministers 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, peoples 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.
It remains disappointing that when I constantly ask for a new consensus for a new settlement, Her Majestys 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.
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 NICEs statutory remit to be changed to include the societal costthat is, the cost of carerswhen taking into account the cost and clinical effectiveness of drugs, not least those for early-onset Alzheimers?
Mr. Lewis: 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 Darzis 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.
Mr. Richard Caborn (Sheffield, Central) (Lab): I put on record our thanks to the staff of the House who have prepared the briefingGreg Howard and his colleagues have done a first-class job and have saved us many hours of research.
It is not often that I buy the Racing Postin fact, I do not think I have ever done so beforebut I bought it this morning. At £1.50 it is nearly twice the price of The Guardian[Interruption.] It is not quite as left wing as The Guardian, but I spoke to someone this morning who said that the subject we are discussing was going to be in the Racing Post. When I sat down on the tube, a guy saw that I had the Racing Post. He proceeded to tell me about a horse that will be running at Brighton and why. He told me about this great trainerI cannot even remember the name nowand why they run horses at Brighton and run them on the flat late and so on. I just sat there in absolute amazement and did not think anything about it, but it shows that when someone buys the Racing Post people start a conversation.
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