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15 July 2008 : Column 6WH—continued
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.
9.53 am
Barbara Keeley (Worsley) (Lab): 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.
David Taylor: 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?
Barbara Keeley: Very much so. I was about to say that it is right to highlight at present the extent to which care charges hit those with dementia the hardest. We must take account of that as we move forward the debate on future funding.
Mr. Stephen O'Brien (Eddisbury) (Con): 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.
Barbara Keeley: 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.
Mr. Burstow: Does the hon. Lady agree that NICE needs to be able to take a wider view of the costs and their impact on carers when assessing such drugs?
Barbara Keeley: 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.
Mr. Philip Hollobone (Kettering) (Con): 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.
Barbara Keeley: 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.
10.6 am
Greg Mulholland (Leeds, North-West) (LD): 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”.
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