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Westminster Hall

Tuesday 16 March 2010

[Mr. Gary Streeter in the Chair]

Dementia Strategy

Motion made, and Question proposed, That the sitting be now adjourned.-(Lyn Brown.)

9.30 am

Mr. Paul Burstow (Sutton and Cheam) (LD): I am grateful for this opportunity to speak about the national dementia strategy-an issue to which the House has returned on many occasions during the past few months and in which I have taken an interest over a number of years. It is now about 100 years since Alois Alzheimer first described the disease that bears his name at a medical conference in Germany. There is still no cure, and our understanding of the basic biological processes remains limited, although I will say something about current research, which is beginning to peel back some of the uncertainty and lack of knowledge.

My interest in the issue does not come from personal family experience. I have been blessed in having no direct experience of family members suffering from this terrible disease. Rather, it comes from my contact with families in my constituency who are struggling with the consequences of dementia. In particular, I am grateful to have a Princess Royal Trust for Carers centre in my constituency, at Sutton. The Sutton carers' centre and the Alzheimer's Society in my constituency have played an important part in educating me about the issues and exposing me to their members who live day to day with the disease.

I am a great believer in serendipity. It came as a surprise to me to learn yesterday that the Public Accounts Committee is to publish its findings today on the National Audit Office's report on dementia services. As a member of the Committee, I found our hearings in January interesting. I have a few questions from those hearings to ask the Minister today. Both the Public Accounts Committee and the National Audit Office report areas of progress on dementia but point to what the Chairman of the Committee has described as a gulf between promise and delivery so far.

Earlier this year, I was asked to write the foreword to a report published by Oxford university and the Alzheimer's Research Trust called "Dementia 2010". The report revealed a number of facts that have added to our understanding of the scale and scope of the problem and the challenge that we face.

Some 820,000 people in the UK are living with dementia. The previous estimate, which is still widely quoted, was 700,000. Dementia costs the UK economy £23 billion a year; the previous estimate was £17 billion. That is twice the cost of cancer, which is £12 billion a year; three times the cost of heart disease, at £8 billion a year; and four times the cost of stroke, at £5 billion a year. The combined Government and charitable investment in dementia research-£50 million-is 12 times lower than spending on cancer research, which is £590 million a year. Heart disease receives £169 million a year and stroke research £23 million. For every £1 million in care
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costs resulting from dementia, £129,269 is spent on cancer research, £73,153 on heart disease research, £8,745 on stroke research and just £4,882 on dementia research.

I am sure that all that will be clear when it is on the record in Hansard, although it might not be clear now, while I am blinding colleagues with figures. What the Alzheimer's Research Trust is trying to demonstrate in its report is the lack of ambition evident so far in the funding for dementia research. The report is saying not that less should be done elsewhere, but simply that the case for dementia research is compelling. Every dementia patient costs the economy £27,647 a year, which is more than the UK median salary of £24,700. By contrast, cancer patients cost £5,999, stroke patients £4,770 and heart disease patients £3,455. Delaying the onset of dementia by just five years would halve the number of deaths from the condition, saving 30,000 lives a year. That is a huge opportunity. The UK is undoubtedly playing a crucial role in finding a cure and leading the world in basic and clinical research, yet dementia research is woefully underfunded: the Government invest only 2 per cent. of their medical research budget in dementia, spending many times more on other health conditions.

The 2009 report on dementia by the Nuffield Council on Bioethics stated that

The issue was recently recognised in the United States of America, which tends to take a fairly legislative approach to pushing issues forward. An Alzheimer's Breakthrough Bill is currently before Congress. They have lovely names for Bills in the States; our Clerks would not allow us to give a Bill a name of that sort. If the Bill is passed, it will allocate $2 billion to dementia research.

Despite that significant American commitment to dementia research, the UK must play its own role, given our international advantages in dementia and other scientific research. The UK is second only to the US in dementia research impact. British scientists are responsible for 7 per cent. of the top cited dementia papers globally, and important innovations have come from UK research, such as the discovery of most of the genes associated with dementia so far, work leading to the development of the only licensed treatment of Alzheimer's and the neuropathology of several rarer dementias. Furthermore, the national health service gives the UK a competitive edge in trialling new dementia treatments.

Recently, after the publication of "Dementia 2010", I was invited by the Royal Society of Chemistry to chair one of its public lectures, by Professor Chris Dobson, who is master of St. John's college and from the department of chemistry. He lectured on some of the extraordinary work done by him and his team of young graduates on the disease mechanism behind dementia and the role of proteins in the body. It is a potential key not only to unlocking our understanding of the disease, but to identifying treatments for dementia that arrest its
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progression and might even cure it. The team also established a link to other neurological conditions in our understanding of dementia. That research is being done in this country. We need more such research and the ambition to fund not just a cure, but the discoveries necessary to build bridges to it.

The Minister's taskforce on dementia research, which is intended to drive the issue forward, held its first meeting on 24 February. Will he tell us a bit about that meeting? There is clear and demonstrable public support for investment and research into dementia. One survey found that 66 per cent. of people think that the Government should spend more money on dementia research, and only 2 per cent. thought that funding should be cut.

Mr. William Cash (Stone) (Con): The hon. Gentleman is making an important contribution; it is fascinating to hear him develop his argument. He has not yet addressed the question of demographics and the increase in the number of elderly and ageing people, which must have a bearing on the future. Does he agree that in our desperate need to solve the tragic problem of dementia, we must find the means to relate it to the future and the increasing number of people who will inevitably be afflicted as they grow older?

Mr. Burstow: The hon. Gentleman is absolutely right to identify the demographics, which present a problem not only in the increasing number of people who present with dementia, but in our society's ability to provide the necessary informal care. It is estimated that, over the next 20 years, this country will need an additional 15 million carers to cope with the increased burden of diseases such as dementia. That is why the research figure that 800,000 people suffer from the disease is so relevant.

Bob Spink (Castle Point) (Ind): I congratulate the hon. Gentleman on highlighting this subject and on the compelling case that he is making. Caring for dementia sufferers is a demanding and stressful job. Does he agree that were people not caring for their loved ones so compassionately, the burden on the state would be much higher and his figures would be different? Does he also agree that there is a stigma around mental health? Rethink is trying to tackle that problem with the "Time to Change" campaign. That is part of the context that causes dementia research and caring to be pushed into the background. We should address it head on.

Mr. Burstow: The hon. Gentleman makes an important point, which I am sure the Minister and others will have heard. He is right to identify the cost of care. A substantial part of the £23 billion economic cost of dementia is the conservative estimate of £12 billion for informal care.

On research, will the Minister say what were the outcomes of the first meeting of the ministerial taskforce and when the minutes will be posted on the website? It would be good to be able to study them. What timeline do the Government envisage for increasing the funding available for dementia research? When will we hear an announcement? Could we hear one in the Budget next week?

I have taken an interest in anti-psychotic drugs for many years. I will not labour this area because of the good work done by Professor Sube Banerjee in his
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report that formed part of the strategy. When the Government published the action plan to reduce the use of anti-psychotics by two thirds, the report found that 150,000 people with dementia were being inappropriately prescribed and that as many as 1,800 deaths a year could result, thus suggesting that the prescription of such drugs needs to be borne down upon and reduced. The report set out a strategy to do that and stated that it could save about £55 million.

The Public Accounts Committee took evidence from David Behan, the official responsible for social care in the Department of Health, who has been widely credited for his work in this area. I asked him how soon the action plan's strategy to reduce such prescribing by two thirds might be realised. I left the exchange with the impression that the intention was that it would be done within the next two years. On re-reading the transcript, I found that it may take two years before the baseline is established. The reduction will presumably take a further two years after that. It would be helpful if the Minister clarified whether we will see the two-thirds reduction in anti-psychotic prescribing in two years, or whether it will take two years for a baseline to be produced and a further two years for the reduction.

At the heart of my concerns is the lack of priority. The National Audit Office put its finger on that, as did the Public Accounts Committee report. In December 2007, after the first PAC examination of this matter, the Department of Health published its operating framework for 2008-09. Among the local priorities it stated:

That was flagged up as a local priority, not a national requirement or even a national priority.

Late last year, the NHS operating framework for 2010-11 was published. It did not identify dementia as a national priority. Only in some weak words under the title "Areas to support local prioritisation" is dementia mentioned. It states that improved efficiencies and outcomes are to be gained by

In addition, the vital signs indicators to be used by primary care trusts do not mention dementia. The Department of Health has said that vital signs cannot be reopened to include anything else until the next spending review. However, given the stated priority that we have heard from the permanent secretary and Ministers time and again, surely the vital signs should be updated to include a measure on dementia, or separate guidance should be issued to ensure that dementia is a priority nationally and locally.

There is a deficit of awareness of the strategy and its implementation on the ground. Health and social care staff participating in the NAO research could not identify leaders on dementia and felt excluded from the implementation process. It is reported that care homes have received no communication about the strategy and have seen no sector leadership. Only two strategic health authorities were actively working with care homes when the NAO did its fieldwork. The research revealed that many front-line staff-in particular, general nurses-were unaware of the strategy. A lot must be done to close that gulf of understanding among professionals, let alone the public.


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Lorely Burt (Solihull) (LD): I congratulate my hon. Friend on securing this important debate. Unlike him, I have had the tragedy of Alzheimer's strike people close to me. Has he read the Alzheimer's Research Trust report that estimated that 31 per cent. of people with dementia are registered on GPs' lists? It suggests that that is due to GPs' lack of training and confidence in diagnosis. However, a person close to me was referred by a GP to a consultant. He actively helped her with the memory test to improve the outcome. Does my hon. Friend share my concern that the health service seems to be pursuing a strategy of ignoring the problem unless relatives fight for help, or the illness becomes so bad that it can no longer be ignored?

Mr. Burstow: My hon. Friend makes some powerful points. Evidence has been gathered over the years, by the Audit Commission and others, of diagnostic denial in the NHS with regard to dementia. That is changing, which is good, but some GPs clearly still harbour the view that diagnosis is pointless because there is no cure. I disagree with that, as does the national strategy. We need early diagnosis because it allows families to plan and to come to terms with the condition.

Interestingly, the NAO found that more GPs now feel that early diagnosis is important. That is a good move forward, but some GPs still need to be convinced. In 2006, 68 per cent. of GPs agreed that it was important. In 2009, the figure was 77 per cent. Only 47 per cent. of GPs said that they had had sufficient training in dementia management, and almost two thirds were not confident in diagnosing dementia.

According to the research, there has been no improvement in GP knowledge and awareness of dementia over the past five years. There are widely held concerns among GPs about gaps in post-diagnostic support. That is why there is a question about the role played by the quality and outcomes framework. It awards GPs quality payments for keeping a register of people with dementia and for reviewing cases, but there is not much clarity on whether it is possible to enhance the emphasis on dementia. Will the Minister say what the Department's position is on using the quality and outcomes framework as a lever to drive change in this area? It could play an important role.

When the Minister launched the strategy, he talked of the ambition of having a memory service in every town in the country. Was that just an ambition? How will it be translated into practice on the ground? How soon will that ambition be achieved?

Mr. Cash: The more I hear, the more impressed I am with the landscape being painted by the hon. Gentleman. Does he think that this debate will get any national coverage? Would he like to place a bet with me that it will almost certainly not be reported at all?

Mr. Burstow: I have been an MP for 13 years, and I am used to the fact that that is sometimes the outcome of Westminster Hall debates. However, obtaining coverage is not the only reason we have such debates; we have them because they provide an opportunity to talk to a Minister directly across the floor and get a response. That is why I have chosen to initiate the debate. If any attention is paid to the matter that we are discussing, I
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suspect that it will be paid to the Public Accounts Committee report, rather than to this debate-but we shall see.

The next issue that I want to raise is that of local information on dementia services. Again, a commitment was made at the Public Accounts Committee meeting that, by the end of this month, each primary care trust and local authority would have a joint action plan in place to take forward plans to deliver the strategy, and that that would be part of the baseline audit of dementia. Clearly, we need to know if that will be delivered. Will the Minister tell us whether the baseline reviews are on track for delivery by the end of this month and, similarly, whether the joint action plans will be ready by the end of this month? Is the Minister confident that those things can be delivered on time?

Work force issues are at the heart of how all those measures can really transform lives. It is not just about spending more money; it is about ensuring that we have a capable and competent work force that can properly care for and look after people with dementia. It was instructive to note, during the exchanges at the Public Accounts Committee meeting, that one component of the issue of the work force is the role of the General Social Care Council. At the moment, it registers only social workers. Six years have passed since Ministers promised the House that staff who work in people's homes would have the opportunity to be registered, and would therefore be covered by the standards set by that body and regulated by it.

We still do not have a time scale and a deadline by which those people who go into others' homes to care for them will be registered with the General Social Care Council. That is clearly a result of the fact that the body appears to be rather dysfunctional in a number of ways, as ministerial statements have indicated. It would be useful if the Minister could say a bit more about that, and about what discussions are going on between him and his officials with organisations such as the Royal College of General Practitioners, the Royal College of Nursing and the British Medical Association about developing dementia care skills for health service staff.

There is a lot of talk at the moment about who pays for care and how we should do so. That has rightly become a much higher priority for debate and, just last week, I attended a round table with the Minister and the Opposition spokesman, the hon. Member for Eddisbury (Mr. O'Brien), in order to contribute to that discussion. I hope that such debates will continue. There is no doubt that people with dementia and their carers are among the hardest hit by the current charging system. Despite dementia being a medical condition, care is still largely provided through social care, and it is mainly means-tested, rather than being funded in other ways, as with other illnesses.

I want to mention some of the excellent work done by the Princess Royal Trust for Carers, and by Crossroads Care. Those organisations have rightly been snapping at the Minister's heels to ensure that the undertakings given in respect of allocations of money to deliver the carers strategy bear fruit on the ground. They have just published research that has revealed some disturbing findings about the extent to which the money that Ministers said would be allocated to carers-particularly for carers' breaks-has been siphoned off into other NHS budgets.


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