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Dementia Services (South-West)

Volume 546: debated on Monday 11 June 2012

Motion made, and Question proposed, That this House do now adjourn.—(Angela Watkinson.)

Before I call the right hon. Member for Exeter (Mr Bradshaw), perhaps I could appeal to Members who are leaving the Chamber—unaccountably not wishing to remain to hear the right hon. Gentleman’s speech—to do so quickly and quietly, affording the same courtesy to the right hon. Gentleman that they would want to be extended to them.

Thank you very much, Mr Speaker—and thank you very much for granting a debate on a subject that is of great concern to my constituents in Exeter, to people throughout the south-west, and, indeed, to people throughout the country. My own mother suffered from dementia, and died very young when I was just 18. That was in the days when Alzheimer’s and other dementias were only just beginning to be recognised. Since then we have made great strides in terms of our knowledge and understanding, and the treatment that is available to sufferers and their families. I pay particular tribute to the Alzheimer’s Society for its campaigning work and the support that it provides for people.

There are currently 800,000 people with dementia in the United Kingdom, and one in three of us will have it by the end of our lives, so this is an issue that touches, or will touch, virtually every household and every family in our country. Although progress has been made, there are still big gaps and unacceptable variations in levels of service and support, and I shall focus on three issues that cause particular concern: the rates of diagnosis; the availability of drugs for sufferers; and the overall resilience of the care system, on which many dementia sufferers and their families depend.

Everybody—including, I am pleased to say, the Government—accepts that early diagnosis is absolutely vital in ensuring that people with dementia and their families receive the information, treatment and support they need. At present, however, fewer than half—43%—of dementia sufferers have a formal diagnosis, and in the south-west that rate is even lower; in fact, my region has the lowest diagnosis rate of anywhere in England at just 35.4%, with my own county, Devon, having barely a third of sufferers diagnosed and Dorset having the lowest rate in the country at just 27%. As the south-west of England has a higher than average proportion of elderly people, and therefore more dementia sufferers, that is extremely worrying. Indeed, according to the Minister’s own figures, in Devon alone there are almost 9,000 people with dementia who have not been diagnosed. In contrast, average diagnosis rates across Northern Ireland are above 60%, and in Belfast the rate is almost 70%. What is the Minister’s explanation for this huge variation in diagnosis rates across the country, and what are his Government doing to address that?

Many fear that the Government’s upheaval of the NHS might make this situation even worse, not better. Putting GPs in the driving seat means that the level of awareness and understanding of the problem among GPs will be more important than ever. GP training is therefore vital, and I welcome the progress that is being made, such as in Devon, where an education programme for GPs has reached 374 practices across our county, and there are already signs of increased diagnosis rates. But education alone is not enough. GPs need to have access to help and support, but the key to improving diagnosis rates in the south-west will be to ensure that GPs can refer patients to memory services for diagnosis. I have heard reports of people waiting over a year for an appointment at a memory clinic, however.

As the Minister will be aware, the Alzheimer’s Society recently wrote to all MPs asking us to write to our local primary care trusts in order to establish waiting times at memory services in their areas. I commend this initiative. Will the Minister say whether the Department of Health collects data on waiting times at memory services in the south-west—as well as in other regions? If not, will he arrange for NHS South of England to provide Members with this information?

The Royal College of Psychiatrists has established the memory services national accreditation programme, to ensure that services at memory clinics meet national standards. Does the Minister agree that all memory services should seek such national accreditation and that that should be a priority for local NHS managers?

As the Minister will also be aware, next month the all-party group on dementia will report on its inquiry into improving diagnosis rates. I understand that he has been invited to the launch of the report, and I hope he can confirm tonight that he will be able to attend.

The second issue I want to highlight is the variation in the availability of medicines for dementia sufferers. These medicines can make an enormous difference both to the progression of the illness and the quality of life enjoyed by the sufferer and their carers. The Minister will be aware of the massive—some reports have suggested as much as 50-fold—variation in the level of drug prescribing among PCTs in England. Again, the south-west does very poorly. We are not the lowest region in England in respect of prescribing, but we rank as the second lowest region after the west midlands. It is very worrying that our region, with its high proportion of elderly people and therefore of dementia sufferers, has the second lowest level of availability of medicines that could help them. Will the Minister explain the reasons for that, what the Government are doing about it, and how he can guarantee that this problem will not get worse under the Government’s reorganisation of the health service?

The third and final concern I wish to raise tonight is the financial hardship faced by dementia sufferers and their families because of the cost of long-term care. We know that, in some cases, that can run into hundreds of thousands of pounds; it can lead to families losing their homes or their inheritance because of the lottery of getting dementia. Many people rightly feel that that is deeply unfair. In my view, the long-awaited report by Andrew Dilnot on the future of long-term care provides a sustainable and equitable solution to that deep unfairness that some families face and to the general challenge of providing long-term care.

This is an incredibly important debate and my right hon. Friend has touched on a number of issues that affect my constituents. In a recent case, the mother of Lee Finn was in Derriford hospital with dementia; the family came in and read her chart—they had power of attorney— and saw that it said “Do not resuscitate”. The family had not been asked or consulted in any way. Does my right hon. Friend share my concern that, although there is some fantastic work going on in the field of dementia, crass errors continue to be made that cause families deep unhappiness? It is clearly not good for the dementia sufferers if the whole family is destabilised because of poor decision making.

I agree absolutely. As I said, and as I hope the Minister will endorse, training and awareness of dementia are vital not only in primary care settings but in secondary care settings, as in the case my hon. Friend raises. Some people who may seem to be extremely ill with dementia and who are in the situation she describes may in fact be physically perfectly fit and able to carry on living for some time. I hope that her local hospital will take up the case and provide a satisfactory response.

As I was saying, there is a strong feeling on both sides of the House that we need a sustainable and fair solution to the challenge of long-term care. That challenge particularly, but not solely, affects families with members who suffer from dementia because of the enormous costs imposed on them by having to pay for long-term care. I do not think it an exaggeration to say that there was great disappointment when the Queen’s Speech again failed to include a Bill to implement the Dilnot proposals. As far as it goes, the Government’s commitment to a draft Bill was welcome, but it would be helpful if the Minister told us when that draft is likely to be published and guaranteed that a Bill will be passed in this Parliament. May I boldly suggest that that would be a real legacy and worth working for?

Does my right hon. Friend agree that part of the reason people are not diagnosed is the great fear of what dementia means? In fact, if we provided good care in their own homes, they could stay there longer before needing to go into residential care. We should look not only at the cost of residential care, but at the cost of home care and reach a settlement on that, too.

My hon. Friend is absolutely right and makes an important point.

I would be grateful if the Minister also gave a commitment that the Bill, when it comes to the House, will address the postcode lottery in the availability and quality of services. Tower Hamlets in London, for example, spends five times as much on dementia services as Cornwall in the south-west, which is the lowest spending authority in the country. That simply cannot be right.

The urgency of meeting the challenge of long-term care is all the greater as figures uncovered by my hon. Friend the Member for Leicester West (Liz Kendall) show that pressure on local authority budgets is already leading councils to increase their charges and tighten their eligibility criteria, so that many people are losing the assistance they previously received. The situation is getting worse and will continue to do so until the Government grasp the nettle of long-term care and implement the Dilnot report.

At any one time, one in four hospital beds is taken up by people with dementia. Delayed discharges from hospital and unnecessary admissions to hospital cost every hospital in the south-west hundreds of thousands of pounds a year. As my hon. Friend the Member for Bolton West (Julie Hilling) has just said, all the evidence shows that early intervention with community services is cost-effective, it keeps people out of hospital, it is what people with dementia and their families want, and, in particular, it is what the people who have the main responsibility for caring for those sufferers want.

However, the tightening of the eligibility criteria and the cutting of local services are having the opposite effect: they are increasing the costs for the NHS. I do not know whether the Minister has any figures with him. If he does not, perhaps he could write to me, as I would be interested to know whether he has made an assessment of the impact on the NHS in the south-west of the tightening of eligibility criteria by local authorities in the area for people with dementia.

By 2021, more than a million people will be living with dementia in the UK, and this year dementia is set to cost us £23 billion. In the next 10 years, the number of people in Devon with dementia is set to increase by a third. It has been said before, but I will say it again: we face a dementia time bomb. Addressing it will require leadership and more public investment in the short term, but a successful dementia strategy will be much cheaper and equitable in the long run, and it will also reduce the strain on and suffering of patients and their families. Surely it cannot be too much to expect that someone with dementia can receive a decent level of care wherever they live in the country and that their families should no longer to be subjected to the ruinous costs of long-term care simply because they happened to have a relative who suffered from this illness.

I congratulate the right hon. Member for Exeter (Mr Bradshaw) on securing this debate. He is absolutely right to highlight the importance of the issue of dementia. It is, without doubt, one of the biggest health and personal issues affecting our society today, and it will touch the lives of many families in this country. He rightly rehearses the statistics, and dementia is a priority for this Government. We know that in England there are 670,000 people living with dementia, that the figure is set to double over the next 30 years and that in England the cost of dementia to society as a whole is about £19 billion. However, the true costs of dementia are incalculable. I am talking about the cost in terms of the impact on people’s lives, the lost opportunities and the consequences of taking on a caring responsibility within the family, and the costs and consequences for the individual. As has been said in this debate, we know that cancer has been replaced by dementia as the disease that people in their 50s now fear the most, and the right hon. Gentleman has highlighted a number of reasons for that.

That is why, on 26 March, the Prime Minister, on behalf of this coalition Government, set out this Government’s dementia challenge: to go further and faster in implementing the previous Government’s dementia strategy; to focus, in particular, on the issue of diagnosis rates; to raise awareness and ensure that we prepare our society to be adapted and adaptable to the needs of people with dementia; and to double the research funding available in the area of neurosciences and dementia by 2015.

The dementia challenge builds on the previous Government’s work on the national dementia strategy. We kept and built on that strategy, rather than losing any of the momentum that it put in place. I pay tribute to the Alzheimer’s Society for the work it does, and we are working closely with it. We have brought together three champion groups that are taking forward the work on raising the need to improve diagnosis and the treatment and care of people so diagnosed. We are also focusing on issues associated with how we raise awareness, both within the social care and health care work forces and in wider public services. Finally, we are working with the research community to improve capacity significantly and make sure that we have more good quality bids for funding for dementia research in this country.

On the recognition of dementia, we need to ensure that the challenge is not just for the national health service or social services departments, but for our whole society. Work is being led by the Alzheimer’s Society and one of its key champions and ambassadors, Angela Rippon, on how we create dementia-friendly cities, towns and villages. The county of Devon is taking a lead working with schools so that young people better understand dementia and get involved in services supporting people with dementia in the community.

The Government have laid the foundations for dementia research, investing heavily in biomedical research centres and seeding the necessary interest among the research community through themed calls. Something in the region of £17 million of new money is now going into research.

The right hon. Gentleman is right on diagnosis: there is still inexplicable and unacceptable variation within his own region, let alone across the whole of England. In 2011, 30,000 people had been diagnosed and were living with dementia in the south-west, which is among the lowest rates in England. However, we know from the figures that the movement is in the right direction. It is not as fast as he would like, nor as fast as I want it to be in future, but in 2010, the diagnosis rate was 35.4%; by 2011, it had risen to 37.3%.

The Government are ensuring through our dementia challenge that general practitioners and other health professionals are referring more people for assessment. We are making people aware of the availability of memory services and targeting hospitals to ensure that they receive extra resources to undertake dementia risk assessments of people over the age of 75. There will be additional resources to support that activity. We are confident that it will lead to a significant increase in the numbers of people being both diagnosed and referred for diagnosis.

The right hon. Gentleman referred to the Royal College of Psychiatrists accreditation programme. I endorse what he said. It is important that more memory services seek that accreditation, and many in his region are doing just that.

I can tell the right hon. Gentleman that there has been a further acceleration in progress on diagnosis. Devon commissioners tell me that, in the past year, Exeter has been among the strongest performers in Devon in improving its rate of diagnosis. Indeed, there was an 11.6% increase in the number of people receiving a diagnosis in the county. The local NHS is building into its commissioning plans for the coming year an improving diagnosis trajectory. I hope that he and other hon. Members continue to hold local commissioners to account for their commissioning decisions on dementia.

The right hon. Gentleman referred to Northern Ireland and the reasons for its success. One reason Northern Ireland has been successful is that it has invested heavily in its community and voluntary sector services, which has played a part in raising community awareness. More people have in turn asked whether they need to be referred to a memory service. That is one reason why the Government have sponsored an advertising campaign. We want to raise awareness and get families to talk about dementia, and not to put it off or believe that it is just a consequence of ageing.

What the Minister says about Northern Ireland and the figures for Devon is interesting. Does he believe there is a connection between dementia diagnosis and support and the relative stability of a population, such as that of Belfast? Devon has a more transient population, and people move there to see out their old age, perhaps away from their families. How important is proximity to family and close friends in terms of diagnosis and support?

That is part of the Government’s approach to raising awareness. We recognise that getting families to have conversations when they see the first signs of memory loss, or other behaviours that might indicate dementia, is an essential part of getting people to have a conversation with their GP about referral to a memory service. Whether that is to do with more stable communities is an interesting question to consider further. We are working with the research community because we want to encourage more applications for social research as well as research into the underlying causes of the disease.

The right hon. Member for Exeter asked about waiting times. Although there have not historically been routine central collections of waiting times, we will have to consider the matter closely. The Government are keen to drive improvements, and it is no good somebody getting a referral if they and their family are then left hanging for too long. He made an important challenge on that matter.

The right hon. Gentleman rightly talked about support for families. In the operating framework for the NHS, which we published last December and which covers this year, we were absolutely explicit that NHS organisations must work with local authorities and carers’ organisations to get their sign-off for their plans for carers. We stated that they must be explicit about the number of carers’ breaks they will provide and the budget that they allocate for carers in their area. We need to ensure that carers get vital breaks, rather than having to have a breakdown before the NHS picks up the pieces.

From next year, we will also expect NHS organisations to demonstrate that they are supporting carers of people with dementia in line with the guidance that the National Institute for Health and Clinical Excellence issues. Early diagnosis is important because families and the individual themselves need to be able to plan, but also because NICE’s guidance on medication states that people need access to drugs at an early stage. I will write to the right hon. Gentleman about the variations that exist.

What are the Minister’s views on the funding of dementia groups and carers’ groups? I visited my local group a fortnight ago, and it is struggling for money because of cuts in its local authority grants and health grants. Will there be money behind the new strategy for carers, and more money to support dementia groups in the community?

I say two things in response to that question. First, the picture is actually quite varied, and I will come on to the investment that is being made in the support network of voluntary and community organisations in Devon. Secondly, the Government have provided £400 million, through the NHS, to support carers through carers’ breaks and other arrangements. We have specifically said that local plans will have to be signed off by carers’ organisations to ensure that the voice of carers is heard when decisions are made.

The right hon. Gentleman asked me about the costs facing families. I understand that concern, which the House has been debating for at least the past 15 years, and it is important that we reach conclusions. We will shortly publish a White Paper and a progress report on our deliberations on funding reform. Dilnot produced a clear set of recommendations, which the Government welcomed when they were published last year.

It is also important to stress that funding reform, important though it is, is only one of a number of issues to consider in improving social care in England. Others include variability of quality, a lack of focus on prevention and early intervention, services that do not join up well for families and do not always integrate well with the NHS, and a lack of personalisation. We expect to address all those issues in the White Paper that we will publish shortly.

When it comes to legislation, we will publish a draft Bill before the summer recess, which will set out the details of a comprehensive reform of social care. We will address the fact that for 60 years, social care legislation in this country has evolved in a piecemeal fashion and as a consequence, in my view, constitutes something of a dog’s breakfast. It is hard for people to navigate their way around the system and identify when they are entitled to support from their local authority and when they are not.

Innovation is important in driving improvements in quality for people with dementia. That is one reason why, as part of the dementia challenge, we identified an innovation prize of £1 million for NHS organisations developing ideas for the transformation of dementia care services. In the south-west and south of England, the NHS has specifically identified and made available a further £10 million for such innovations.

I said that I wanted to mention briefly some of the other actions in the south-west. The Royal Devon and Exeter NHS Foundation Trust has piloted patient passports in a very good piloting exercise. It has alighted on a scheme proposed by the Alzheimer’s Society called “This is me” passports, which are very useful for people with out-patient appointments and those who are being discharged from hospital. The trust is also running an “An hour to remember” training programme to raise the awareness of staff about both the people who have dementia and the people who are with them—that is, their family members and carers—and that is ever so critical. Every fortnight, there is a day’s training in dementia care for clinical and ancillary staff. The trust has also recently strengthened its mental health liaison services and is reaching out into its communities to pilot a virtual ward scheme, which is a very important way of avoiding unnecessary admissions into hospital. Beyond the hospital, there are networks of support and there are 37 memory cafés around the county—I believe that there is one in Exeter itself—and more than 200 volunteers have been trained in dementia awareness to help support those areas.

The right hon. Gentleman also mentioned the role of GPs. I am not certain that we have the same figures, but my understanding is that 67 of the 107 GP practices across Devon have already undergone GP-led dementia training, which has already led to a significant increase in the number of referrals going through.

There is much to be done and much that the Government are doing already. There are significant signs of progress up and down the country. The dementia challenge set out by the Prime Minister in March is real and it is about ensuring that we mobilise not just the national health service and our local authorities but our whole community to engage with one of the biggest challenges faced by our society. I would certainly say that the evidence points towards a lot of hard work being done by NHS and social care professionals across Devon and the south-west that is beginning to lead to a significant increase in the diagnosis rates. As a consequence, many more people are getting the treatment and care that they need and that their loved ones deserve. I thank the right hon. Gentleman for securing this debate.

Question put and agreed to.

House adjourned.