After Mr Burstow has finished his contribution, I will announce whether there is to be a time limit, and, if there is, what it is.
I thank the Backbench Business Committee for the timely opportunity to debate on the Floor of the House this most important of issues. I also thank my hon. Friend Tracey Crouch for her commitment to, and interest in, these issues and her determination to ensure this debate took place today, and Hazel Blears, who chairs the all-party group on dementia. Together, the three of us argued the case for this debate to come to the House, and I look forward to their contributions. They are both passionate about this issue.
Earlier this week, I was at an event at which the daughter of an 86-year-old woman with dementia said some things that spoke to what this debate is all about. She talked about being a full-time carer for her mother and about the agonising decision to move her mother into a care home. She said that although death and moving house were probably the two most traumatic events in our lives, dementia was a never-ending bereavement and that the daily trauma had robbed her and her mother of life. Such true-life experiences, many more of which I hope will come out in today’s debate, make it plain why dementia is now the disease most feared by the over-55s.
My interest in the issue goes back well over a decade and was started by a report that I read into the inappropriate and, in some cases almost abusive, use of anti-psychotic medication. Even then, the side effects were beginning to be well documented and understood, so it is no wonder that at the time these anti-psychotics were labelled as a chemical cosh. As the evidence has mounted over the last decade or so of the increased risk of stroke as a result of these drugs and of the fact that they can shorten lives, I was prompted to ask endless parliamentary questions to Ministers about the matter and to produce a series of reports. At times, it felt a bit like banging my head against a brick wall.
I am pleased to say that the wall has started to tumble and that things have begun to change, and, in the last two and a half years, we have seen a 52% reduction in the prescription of these drugs to individuals receiving them for inappropriate reasons. As a result, lives have been saved and lives have been changed. But—and it is an important but—the Prime Minister’s progress report on his dementia challenge made it clear that there is no room for complacency and that there is still too much regional variation in the use of these drugs to manage people with dementia and too much prescribing. I hope that the Minister will tell us what the next steps will be, when the next audit, which has been committed to, will take place and be published and what other steps he thinks will be necessary to ensure that we achieve the goal of a two-thirds reduction in prescribing.
I pay tribute to Clare Gerada, president of the Royal College of General Practitioners, who was instrumental in getting the co-operation of GPs for the necessary surveys to understand prescribing practice and who has led some of the change in culture and behaviour in this area. I also pay tribute to the last Labour Government—not something I always do—for producing the first national dementia strategy. It was one of the first in the world, in fact, and should be recognised as an important contribution.
When I became care services Minister in May 2010, I had to make a judgment: did we carry on the road laid out in that strategy, or did we start again? I took the view that we should use the strategy as the foundation for future action, and I am pleased to say that, as a result, the Government have done a lot to deliver on the strategy and go beyond it, through the creation of a dementia action alliance, bringing many different organisations together in a common cause, through clearer commissioning guidance, through collaboration with the Design Council and through funding the Life Story Network to run training courses. The latter is a small thing, but it makes a big, big difference: by telling our stories and understanding who we are, we start to look beyond the diagnosis of dementia, and, as a result, we start to treat the person, not just the disease.
Furthermore, the audit of dementia services has given us a handle on where different parts of the country have reached in developing their services and has led to new incentives in hospitals to support best practice and the much-valued—I hope—analytical tools that will help to drive up diagnosis rates, which are still far too low. Following the research call made just over a year ago, I was delighted to see just last week that £20 million of funding has now gone to new dementia research projects. That far exceeds what I expected at the time as a Minister and certainly what many officials in the Department expected. It really is fantastic news.
The Prime Minister’s dementia challenge has put dementia centre stage, promoting dementia-friendly communities and raising the bar for early diagnosis and quality of care, along with ensuring vital dementia research too. There is a lot happening and it can happen back in our constituencies as well. All of us have an opportunity—and, I believe, a responsibility—to challenge our local services to do more to become more dementia-friendly and ensure that they learn the lessons from best practice. However, there are some questions that the Minister needs to answer about what comes next. The current dementia strategy runs its course in 2014. What comes next? In my view, there has to be a successor strategy—one that is perhaps different from the current strategy in a number of ways, building on the work being done as a result of the Prime Minister’s dementia challenge.
That challenge is a challenge to the whole of Whitehall, not just the Department of Health. Every Department should be a catalyst for action on dementia within its sphere of responsibilities. Indeed, just before Christmas I tabled a series of parliamentary questions to try to establish what each Department was doing to support the dementia challenge. The answers I received were highly variable. Not all Departments seem to have clocked the fact that they could materially do something to make a difference in their sphere of responsibilities. I hope we can pick up on what the Prime Minister said about this being a challenge that cuts right across society, as well as ensuring that it is picked up and understood right across government. Any new strategy needs to embed dementia-friendly thinking right across Whitehall.
We cannot have a debate such as this and not talk about carers. It is important to stress and value the role that family carers play. That is why I was pleased to see recently that the National Institute for Health and Clinical Excellence has launched a consultation on new indicators in the quality and outcomes framework for identifying carers of people with dementia. That is fantastic, but what about all the carers who do not happen to be caring for someone with dementia? On this occasion I think it is wrong to single out one disease. I hope that others will make that comment in the consultation too. The most recent research by the Carers Trust into the NHS and carers’ breaks continues to make depressing reading, however. Too much of the NHS is still ignoring carers and not doing enough to passport the money that this Government have committed to carers’ breaks and make them a reality. As the NHS increasingly wakes up to the big challenge of supporting people with dementia and other long-term health conditions, it needs to wake up to its role in supporting carers too.
I have already mentioned that I was pleased to see the increased research funding that is coming through. I was delighted in 2010 when the coalition programme included a commitment to dementia research. That is a commitment that I lobbied the then Liberal Democrat health spokesman—now the Minister on the Front Bench—to include in our manifesto. Although there has been progress—with a road map now setting the direction of travel, a challenge group bringing various players together and a commitment to double research spending—I found myself becoming increasingly frustrated as a Minister by what I felt to be a poverty of ambition when measured against the burden of disease that dementia represents. We are not yet doing enough—we do not yet have the critical mass—to reach the scale and pace necessary to gain the understanding and insights that we need to make the breakthroughs. The £20 million from the research call is fantastic and I hope it will make a difference, but we still have lessons to learn from the journey made by the cancer research movement. I believe the dementia research challenge group itself needs to be challenged more. We need a long-term plan for dementia research and a sustained increase in funding for at least the next decade. This is about a common endeavour—a collaboration, as it were—between the research funders and the research community, so that we make a concerted effort to expand our knowledge of this disease, to diagnose and treat it and, ultimately, to understand and defeat it.
I am listening carefully to my right hon. Friend, but dementia is clearly not an English disease; rather, it is an international threat. Is there not scope for massive international collaboration on what is an issue confronting all nations?
My hon. Friend makes an important point. Yes, there is scope for that; indeed, many research organisations in this field are already collaborating internationally. However, as a country with a very reputable research tradition, it is important that we should be in the vanguard of that research and put in place the necessary infrastructure to drive it forward.
I thank the right hon. Gentleman for giving way and welcome his very good introduction to this debate. I would make the same point about research within the UK. Post devolution, we often tend to look at it in terms of the different nations and regions in the UK. We should be sharing the best expertise and best practice right across the nations, because 800 of my constituents have been diagnosed—I suspect that there are many more who have not and they, too, need the very best assistance and support.
One of the great things about devolution is that we can try out different things in different jurisdictions, but it is great only if we learn from that by taking the best and using it elsewhere. I therefore agree entirely with the hon. Gentleman that that is an important part of this debate. The ability to exchange and learn—and, yes, sometimes reject things that others are doing—is important.
My final point is about reform. I hope this year might be a tipping point for dementia. Reform of our broken care and support system has never felt closer. For people with dementia and the families who care for them, it cannot come soon enough. When the Prime Minister launched the dementia challenge back in March last year, he acknowledged the catastrophic costs that some people incur as a result of drawing the card in the lottery of life that says “Dementia”. He said:
“We are determined to do the right thing by these people”.
A dementia diagnosis is traumatic enough, without the knowledge that care costs can often spiral out of control as the disease progresses. While care financing is left unreformed, people with dementia face the prospect of losing both who they are and everything they have ever worked for.
I therefore very much welcome the news in Monday’s mid-term progress report that the Government are to press ahead with a cap and increased means test, and the confirmation that the House received on Tuesday from my right hon. Friend the Deputy Prime Minister that the necessary legislation will be enacted in the lifetime of this Parliament. In my capacity as Chair of the parliamentary inquiry into the draft Care and Support Bill, let me tell the Minister that the Committee has made it clear to me—and I absolutely agree—that we expect as much detail as possible on any new clauses or other changes that will flow from the introduction of a capped cost system into the legislation, so that we can do the House the service that we have been asked to perform, which is to report on and scrutinise the provisions and help the Government to introduce the best possible legislation to Parliament.
Let me confirm to my right hon. Friend that I want to do everything I can to ensure that the Committee is as informed as possible, so that it can do the important scrutiny work that it is charged with doing. Let me also take this opportunity to pay tribute to the work that he did as my predecessor to push the dementia debate forward and make substantial progress.
I am grateful to my hon. Friend and look forward to that collaborative approach to the Committee’s work.
I want to end by quoting from an e-mail I received recently. Hon. Members might be aware that I made some comments last week about one way in which I thought this policy change might be paid for. That generated quite a lot of responses; this is one of the ones I think I can quote in the House. It says:
“Tonight I am sitting on my own in the kitchen of our family home surrounded by a lifetime of mum’s possessions, all full of memories from certain times of our lives, while mum is in a care home blissfully (and thankfully) ignorant of my turmoil.
This has to be the lowest point in my life.
Not only coming to terms with the complexities both mentally and physically of dementia, realising I’ve lost my mum even though she’s still here, but stumbling through the bureaucratic minefield of trying to obtain funding and the emotional pressure of raising money by selling off, in effect, mum’s ‘life’.”
That is really what this debate is about. It is about people’s lives and how we can make them better. It is about how we can make the terrible journey through dementia as good as it possibly can be, and how we can secure the common good of having the right services at the right time. I look forward to hearing other hon. Members’ contributions to the debate.
Order. We are going to be brave—or foolish—and start without a time limit on Back-Bench speeches, but it would be helpful if people could aim to speak for 10 to 12 minutes. Anything beyond that would not be helpful.
I am grateful for your guidance, Mr Deputy Speaker. It is a pleasure to follow Paul Burstow. In my capacity as vice-chair of the all-party parliamentary group on dementia—the right hon. Gentleman elevated me in his speech; our group is incredibly well led by Baroness Sally Greengross—I want to pay tribute to his work in this field. I appreciated his personal drive on this issue; it has made a big difference. I should like to thank the Backbench Business Committee for allocating the time for this debate. I should also like to thank all the Members here today. This is a fantastically good turn-out for a one-line Whip, Back-Bench business debate on a Thursday afternoon, and it indicates just how deeply people feel about this issue. Tracey Crouch has been a tremendous help on the all-party group, and I am delighted to be vice-chair alongside her. Her personal drive and commitment have made a big difference.
Nearly 1 million people will be living with dementia by 2020, and the issue now touches the lives of virtually every family in Britain. It is a big issue for the NHS, but it is also a big issue for all the public services. I entirely endorse the right hon. Gentleman’s point that we have to join up the services right across Whitehall if we are going to make the progress that we need to make.
Ten years ago, when I was a Health Minister, it is fair to say that dementia was not at the top of the agenda for Ministers or for the NHS. As ever, there were more pressing issues, such as cancer, heart disease, waiting lists, maternity services—the list goes on. The voices raising the issue of dementia, and of care for older people more generally, were not heard as clearly then as, thankfully, they are today. This is now a massive challenge facing all of us, and I believe that increasing pressure from the public has helped to focus the minds of politicians and practitioners on what can and should be done to support those with dementia and, crucially, the people who care for them.
I also want to depart from normal practice and pay a warm tribute to the Prime Minister. He has put his personal weight behind this issue, and I know from having been a Minister that having the Prime Minister behind a project can give it momentum and get the system moving. It can provide a kick-start and a catalyst. I want to say a genuine thank you to the Prime Minister on this issue. That does not mean that there is not much more to do, and there are certainly concerns about ongoing funding issues, but having the Prime Minister say, “This is my challenge; I am behind it” will get things moving in the system.
Like most people, I got involved in this issue because someone I love has dementia. It is my mum. Over the past five years, I have seen and experienced the impact of that on her and on my dad, who, at the age of 83, is still her full-time carer. I want to raise three issues today. I want to talk about diagnosis, support in the community and the research challenge that we face.
My mum’s diagnosis was absolutely appalling. She had been having problems with her memory for about a year and a half and, like many people, she thought that it was just because she was getting older that she could not remember day-to-day details. However, when she could not remember the day of the week and when she started constantly to repeat herself, we as a family thought that she would benefit from a bit of expert advice.
Mum’s GP was not bad. He referred her to the mental health team for older people. She was just 70 at the time. What happened after that, however, was absolutely terrible. My mum and dad received a visit from a local psychiatrist whom they had never met before. She sat herself down on the settee without any formalities and proceeded to ask my mum 10 questions about the day, the date and who the Prime Minister was—I can think of lots of people who would not have known who the Prime Minister was—and after just a few minutes, announced to my mum and dad that it was very clear that my mum had Alzheimer’s. As Members can imagine, they were stunned and upset. They had no idea what that meant for them or what the future might hold. They were frightened and bewildered.
That was just the kind of brutal diagnosis that we used to hear about in relation to cancer sufferers, but here it was happening to the people I love. Suffice it to say that, after a formal complaint, we did not see that psychiatrist again, but the incident brought home to me how many people in those circumstances are subject to such hurtful and damaging insensitivity. Better dementia diagnosis has to be a priority. Yes, this is about earlier diagnosis, but it is also about sensitivity, understanding and finding the right circumstances in which to make a diagnosis that will fundamentally affect people’s lives.
Diagnosis rates in this country are low and incredibly varied. In general, just over 40% of people with dementia receive a formal diagnosis. The lowest rate is 26%, in
Dorset, and the highest is nearly 70%, in Belfast. There must be a reason for such a dramatic variation. We have made little progress in recent years towards driving up diagnosis rates, yet diagnosis is key, because without it, a person cannot gain access to the support services and the help that they need.
Is it not part of the problem that many GPs are anxious not to diagnose dementia because they feel frustrated that they do not know what to do following such a diagnosis? They do not know what to offer the patient, and there seems to be an inclination to avoid that frustration by not making a diagnosis of dementia at all.
The hon. Gentleman is absolutely right. In fact, the recent all-party group inquiry into diagnosis revealed exactly that situation, which is a real concern. Many GPs are uncomfortable about making a diagnosis of dementia. They sometimes feel that such a diagnosis is pointless if the necessary drug treatments or wraparound care and support services are not available. Increasing the confidence of GPs at that point to enable them to make a diagnosis is of fundamental importance.
The figures on diagnosis are quite stunning. Only half the GPs questioned said that they had sufficient training in this area, and a third of them believed that a lack of access to drug treatments was a barrier to early diagnosis. Almost a third were not confident about making a diagnosis of dementia, and only a third felt that they had had enough training to go through the diagnosis process. Unless we tackle that, we will not get the increase in diagnosis that the Prime Minister and all of us want.
I have listened carefully to what the right hon. Lady has said. She mentioned that Belfast had a high rate of diagnosis, at 70%. The figure in my constituency is around 36%. During her inquiry, was there any attempt to establish why best practice or prevailing factors could not be transferred and learned across the spectrum, in order to improve the situation?
Yes, there was. The all-party group had an interesting presentation from the Scottish Health Department. Diagnosis rates in Scotland are very high indeed, and we learned that the highly organised, managed and focused system there was driving up diagnosis. It is driven, to some extent, from the centre, and I know that that is not always popular these days, but the drive from the centre out to the GPs is really making a difference. I think that there is room for us to adopt a more driven process—it need not necessarily be more centralised—in which GPs are more accountable and in which they report back on rates of diagnosis. There is much more that we can do in that regard.
Diagnosis is a problem, but once a diagnosis has been made, the availability of support in the community becomes relevant. There are many problems in that area. Our inquiry revealed that many carers felt that nothing happened after the diagnosis, because there was no help or support available. In my area in Salford, we are lucky. We have one of the 10 national demonstration projects established under the national dementia strategy in 2009, and we are developing some really innovative services in the community. I should perhaps declare an interest: my mum attends the centre two days a week, and I sit on the strategic board that drives the process there. I have seen that when people are really committed to such projects, they can make a huge difference.
Our centre is the result of a partnership between the local authority and the Humphrey Booth charity, which has existed in Salford since the year 1600. It is a marvellous example of people working together. The centre is known as the Poppy Centre, and its facilities include a dementia singing group, on a Wednesday, which attracts 150 people. That is an incredible resource. The centre also offers day centre services, art work, music, personal tailored care, a dementia café for when friends and family drop in, living history, hairdressing and hand massage. It is a wonderful place, staffed by brilliant people.
I apologise to my right hon. Friend and other Members because I cannot stay for the whole debate. The lesson I have learned from her expertise and from the evidence I have heard about Salford on this and other occasions is that we cannot think in the old way about how we help people with dementia; we have to be creative and provide the best range of services possible.
My hon. Friend is absolutely right. We are at the beginning of the kind of innovative care that she talks about. One thing we need to do is to get more young people and more young clinicians involved in this area, because that is how we will see innovation coming through.
We have a brilliant centre in Salford run by the manager Sue Skeer. There is also Sue Smyth and Nicola Fletcher, and users and carers are on our board. Margaret and Fred Pickering are an inspiration: Fred has dementia, Margaret is his carer and the whole of our practice is driven by users and carers at the centre. We are lucky, but many places have nothing like the Poppy day centre to support them.
We want to make Salford a dementia-friendly community and to make sure that transport, housing, leisure and local shops are all aware of the issues around dementia. My local university in Salford is setting up a dementia centre—a collaboration between the department of the built environment, including architects, and the department of social care. Design is being looked at really seriously. A marvellous Italian Professor Ricardo Codinhoto and a wonderful nurse, Natalie Yates-Bolton have inaugurated not just the design centre at Salford university, but now a European collaboration so that we will have an international design network on how we can make dementia-friendly communities work.
My question to the Minister on dementia-friendly communities, which we hope to be in Salford and which York, Plymouth and other places are pursuing, is: what resources have the Government committed to support the work of these communities, and how will it be sustained in the long term? We can push on, but we need a resource to make it happen. Yesterday, I met Duncan Selbie, the new director of Public Health England, who is going to make dementia a national priority for public health, so there really is commitment and energy behind all this. I want to hear from the Government what they can do to help.
Let me briefly cover my second theme—I have accepted two interventions—which is about the research challenge. I met the Wellcome Trust this week, and I was hugely encouraged by its willingness to put serious research funding into this area. It is looking not just at clinical research, which it might have done in the past, but at research on “living well with dementia”, recognising the importance of a holistic approach. I was impressed, too, when I met David Lynn and Dr John Williams. They acknowledged the difficulty of this area because there is so much that we still do not know about the brain. Nevertheless, despite the failure of the recent clinical trials, the data from them could prove very useful in taking us forward to the next steps, which we hope will help us find drugs that will at least slow down or delay the onset of Alzheimer’s. What everyone who has Alzheimer’s wants is a cure; they are desperate to get some progress here.
If we have a really big push on research, I feel that progress could be made. Our scientists are some of the best in the world in this area, yet for every six scientists working on cancer, only one works on dementia. Only 2.5% of the Government’s research budget goes to dementia, with 25% going to cancer. We should look at the progress made in cancer over the last 20 or 30 years; I do not want to wait another 25 or 30 years to make the same progress for the hundreds of thousands of people who are suffering from dementia now. The Government really must press on.
There are many people out there who want to help us. Just this week, the Daily Mail featured a long article about the possible benefits of coconut oil and the work done on that at Oxford. I have no idea whether that is likely to help people. It has helped some families, but we can see from that the absolute desperation people have to try to find something that can help the life of their loved one. Research is thus a huge challenge, as is help in the community.
I want to express some concerns about where we are at the moment. It is a time of great change in the health service. We are moving from primary care trusts to clinical commissioning groups, and it could be a time of instability. I am worried about the expertise—or lack of it—in the clinical commissioning groups when it comes to commissioning for something as complex as dementia. I want every CCG to have a lead for dementia, developing expertise and knowledge so that they know how to get the best from the money available. I would like to hear the Minister say that he wants to see a dementia lead in every CCG.
My final point is about the resources available to us. Over the last three years, my local authority has faced cuts of £876,000—30% of the adult social care budget. I know the Government will say that they have put £1 billion back in and that £1 billion has been lost, but when the budget is not ring-fenced, it can easily get spent on other issues. It is virtually impossible for councils to meet their targets without looking at the adult social care budget, which is 40% of their overall expenditure. That is why we can see day centres closing. They are an essential support network, providing a lifeline for carers, yet they are being cut. I am very worried indeed—not just about local authority cuts, but about buddying services provided by Age Concern. These voluntary and third-sector groups, so essential to people, are now quite fragile.
I am sure that the future funding of social care is going to be discussed. I make a plea: please can we have the cap at a level that helps the majority of families that need to be helped. If it is set at £75,000, I will be worried that those who really need the help will not receive it.
I think we are now at a point where progress can be made of the kind that has probably not been made for years. I really hope that we can press forward on a cross-party basis. We need a long-term settlement so that we can support people at what is probably the most difficult and frightening time of their lives.
I remember what it felt like to discover that my mum had dementia and that her future would be so different from the one that her and my dad planned together. We have been lucky in that we have been able to speak up and get help and support from the fantastic caring people at the Poppy centre, but it is hard for many people who might not have a strong voice or someone to advocate on their behalf. My mum instilled in me that sense of justice and fairness, which has driven me throughout my political life. I know that she would want me to continue to fight for all those who often find themselves bewildered and powerless, and to make sure that they are treated with care and dignity. We owe them all nothing less.
It is an honour and a pleasure to follow what ended as a very moving speech by Hazel Blears. She is a fantastic fellow vice-chairman of the all-party group, and a real champion on this issue. I would also like to take the opportunity to pay tribute to Paul Burstow, who I thought progressed this issue as a Minister much further and much quicker than did previous Ministers.
I start my comments this afternoon with an explanation of what sparked my interest in this incredibly important issue. As a parliamentary candidate, two events collided and aroused an immense passion about dementia that will stay with me for ever. I cannot quite recall the precise sequence of events, but one was personal and one was professional.
The first was my father calling me to tell me that his mother, Nana Crouch, had been diagnosed with dementia. My beloved grandfather passed away when I was a teenager. Following her diagnosis with this awful condition, nana regressed quickly and was transferred into residential care for her own safety. I went to see her, but she was so confused about who I was that she became quite frightened and I left concerned for her own mental well-being. It was very upsetting to see a lady I respected and loved hide in a corner cowering with fear.
The second event involved me knocking on the door of a man called Maurice. He and I remain friends today, despite our political differences. At the time, Maurice’s wife was still alive but was in a care home suffering from dementia. Maurice is a great man, one with a military background and one who had his whole world of traditional male-female relationships turned upside down when he suddenly had to care for his wife.
The challenges that Maurice faced are ones that many carers are exposed to, but his real concern—one I now share—was the poor care his wife received while she was in hospital for a minor injury, where her health care needs were exacerbated by her dementia.
This issue of inadequate hospital care for dementia sufferers is a substantial one. While there is much evidence of good practice, there is an unacceptable variation in the quality of care. Maurice has become a pain in the proverbial, albeit in a good way, to local health care organisations. He champions the need for better care for dementia sufferers in hospitals—and rightly so. Of the carers responding to the Alzheimer’s Society’s “Counting the Cost” report, 77% stated that they were dissatisfied with the overall quality of care provided to people with dementia in hospitals. The key reasons included nurses not recognising or understanding dementia, lack of person-centred care, patients not being helped to eat or drink and patients being shown a lack of dignity and respect.
The issue has been highlighted many times, most recently in a report from the Royal College of Nursing. Staff training, for which nurses themselves are calling, would constitute a vital step towards the addressing of those inadequacies. However, we must also achieve the correct balance between health care assistants and nursing staff, which is vital to the provision of personalised care in hospitals. All too frequently the problem is not the number of staff, but the fact that the ratio of health care assistants to nurses is too large, and nurses are therefore unable to support staff sufficiently.
Unnecessary admissions and prolonged stays in hospital are expensive, and much too often they have negative effects on health and well-being. The all-party group looked into that and the cost to the NHS. I personally favour the notion of the halfway house: a service that could provide a primary care facility for those requiring medical attention for, say, a broken bone or a superficial wound, but in a less hospitalised environment. Not only might that be more cost-effective for the NHS, but it could address the issue of institutionalisation. One in four people in hospital beds have dementia, and, on average, people with dementia stay in hospital a week longer than those without dementia who are being treated for the same injury.
People with dementia often become extremely distressed by ordinary events, such as meal times, and need extra help. If food is just left in front of them, they will not necessarily eat it even if they are hungry. It might be helpful for carers or family members to be present when they are served their food, but most hospitals do not currently allow visitors at meal times. I am keen to hear from the Minister what measures are being introduced to make hospitals more dementia-friendly, and, in particular, what action is being taken to increase dementia awareness and understanding among hospital staff.
I am delighted that the Prime Minister is personally taking an interest in the issue after launching the dementia challenge. One of the more creative aspects of the challenge relates to the importance of dementia-friendly communities. I have observed three local initiatives that, although they have only just begun, have the potential to evolve into wonderful examples of how to meet that challenge. The first was the Alzheimer’s Society roadshow that took place recently at a local Tesco store. More than 55 people visited the vehicle in two days to obtain help, support and advice, 17 of them engaging in one-to-one sessions. Six new people accessed local dementia cafés as a direct result of the roadshow. I must say that I am a huge fan of dementia cafés: I think that they are bringing real value to our local communities.
The second initiative is run by Asda Chatham, which rather movingly granted Christmas wishes to those in a local dementia care home. I was there to help, and talked to the manager during the event. He is keen to ensure that his staff have a better awareness and understanding of dementia, so that they can understand and help when someone is standing at the till feeling confused by something as simple as the coinage in their purse—coins that they do not recognise as the coins from their childhood. We have seen instances in which people stand and stare at oranges, for instance, for a significantly long time, and someone comes along and helps them to understand, making them feel less confused and more relaxed about the environment that they have suddenly realised they are in. I think that our local supermarkets have a key role to play in that regard.
The third example is the fabulous work of Kent fire and rescue service in preventing vulnerable people from harming themselves while living at home. It is a trusted service, and it is doing its bit to help. We heard on the radio recently that in Kent—although not in my constituency—a man with dementia had rather sadly put his pyjamas in the microwave, and had almost set his house on fire. Members of the fire and rescue service arrived and sprayed a retardant over most of the house to ensure that he and his wife could live there safely without the risk of fire.
As the right hon. Member for Sutton and Cheam pointed out, dementia is not just a problem for the Department of Health and local authorities, but an issue for the whole community. Every individual, organisation and department needs to play a part in changing society and its attitudes to a disease from which more than a million members of the population will be suffering by 2021. We need better collaboration and integration across different sectors, and we need to establish how limited resources can be used more efficiently and effectively.
People can and should be able to live well with dementia. We want people to live in their own homes for longer, not only because that is better for them but because it is financially prudent. Early intervention via better, quicker diagnosis is essential. Medication and memory clinics mean that we can now live well with dementia for longer if it is identified early, but at present only 40% of people with dementia receive a formal diagnosis, and that is not good enough.
I recently undertook an anonymous survey of GPs in my constituency. The problem highlighted most frequently was limited time with the patient. A standard 10-minute appointment is not necessarily sufficient in view of the complexity of the disease. When I asked what authorities could do to improve diagnosis rates, one key theme emerged: the need for quicker access to specialised staff, whether that would mean nurses in the community or shorter memory-clinic waiting times. There is such a difference between the worst case of a nine-month waiting time for memory-clinic services and a waiting time of 24 hours, which is best practice. If a day’s wait is possible somewhere, it should be possible everywhere.
Another vital aspect of ensuring that people live well in their own communities is support for carers. We must do all that we can to give those whose world has been turned upside down the time, advice and respite they need. My constituent, Ron, had quite a good experience of the support that was available, and when his late wife was diagnosed with dementia, organisations and services contacted him very soon afterwards. He was provided with a range of support, aimed at the needs of a carer, by Crossroads Care, Admiral Nurses and the Maidstone & Malling Carers Project, but that does not always happen. Other constituents who have contacted me have been completely lost and alone, dealing with the volatile and confused behaviour of their loved ones with little or no support.
It is imperative that we ensure that, following diagnosis, all carers receive a list of services and support in their area. That does not naturally happen at present, but it is important for the person suffering from dementia and for the carers. Ron told me about a book that one of the charities had given him providing a comprehensive list of common difficulties that arise for a person caring for someone with dementia, along with simple and straightforward ways to overcome them. He told me that it was a lifeline and a bible. Will the Minister ensure that a copy is available on the new “Our Health” website as it is rolled out across the country between now and March? It is an essential tool for carers.
Ron’s carers were wonderful, but when his wife passed away shortly before Christmas, all his support was discontinued from the moment of her death. Now the only support he has comes from his neighbours, who help him with his shopping, and it has taken him six weeks to secure an appointment with a befriending service. We have come so far, achieving great improvements in carers’ rights and dementia awareness, but we have such a long way to go. The fact that the person being cared for has died does not mean that the carer has as well. Indeed, that may be the time when help is most important to a carer.
Finally, I want to say something about funding. We must, absolutely must, find the correct way of funding health and social care budgets. My constituent Frank went into a care home with social care needs, and, as a self-funder, was initially charged £650 a week. After he arrived, he was diagnosed with dementia, a defined health condition, and his weekly charge has now increased to £1,200 a week owing to additional care costs. However, a state-funded person is charged only £550 a week, and there is no explanation for that. I am helping Frank’s family to explore the issue, but the fact remains that his lifetime savings and assets will be depleted in no time as they pay for his care.
We must get on with implementing the Dilnot recommendations, particularly the cap on care costs, and we must remember that the cap does not include accommodation costs. In my view, the £75,000 that was rumoured in last week’s papers is far too high, as it will make little difference to most people. I know that budgets are tight, and that the £35,000 recommended by Dilnot would cost the taxpayer £1.7 billion, but we need to consider our priorities. I am a defender of our international aid efforts, but we must consider whether it was right to spend nearly £1 billion over the past five years in India, a country with its own space programme and nuclear arsenal.
The Department for International Development needs to spend an extra £3 billion in the next two years if it is to fulfil the Government pledge of 0.7% of GDP. In cash terms, that is an increase from £7.8 billion in 2010-11 to £11 billion in 2014-15. Governments are judged on their morality, and perhaps it is now time that we recalibrated our priorities and considered spending the extra billions of pounds earmarked for aid projects abroad on funding quality care for the elderly at home.
Benjamin Franklin famously, but rather gloomily, noted:
“In this world nothing can be said to be certain, except death and taxes.”
As we begin another year in the 21st century and teetering on the cusp of having a significantly ageing population, we could probably add a third item to his short list: sadly, we are likely to know someone who is suffering or has suffered from some form of dementia.
This is an important debate, and I am very pleased that the Backbench Business Committee gave time for it. Ultimately we, as elected politicians with the power to change how we deal with those with dementia, owe it to Maurice, Ron, Frank, Nana Crouch and every constituent who suffers from, or cares for, or is a friend or family member of, someone with this awful condition, that actions really do follow the words.
I apologise in advance for the fact that I will not be able to stay until the end of the debate. I congratulate Paul Burstow on securing this debate on what is a very important subject, and I thank the Backbench Business Committee for giving time for it to take place.
First, let me emphasise that this issue is not only about money; it is about people who care about other people and about being compassionate. Since I first spoke out about compassion in nursing, my office has been overwhelmed, receiving more than 1,400 letters and e-mails from people who have experienced poor standards of care in hospitals throughout the country. Many of them are from the friends and relatives of people with dementia or other forms of progressive neurological disease. I shall read out a few extracts from this correspondence.
The first concerns a 73-year-old man with Parkinson’s and early dementia:
“We found him barely able to speak, sitting in a chair with no trousers, shoes or socks on. On another occasion on Christmas day afternoon we went to see him and asked him what he had eaten for lunch. The answer seemed to be ‘nothing’. We returned at lunchtime the next day to find him sitting with untouched food in front of him. He had spilt a cup of water over himself, his dentures were not in, and he was incapable of picking up a cup or food. A member of staff came to clear away the untouched food, but we stayed for an hour and fed him, piece by piece. He ate the whole meal. Other family members and friends then repeated this process on subsequent days. We were told by staff that during his stay of 37 days this quite slim man lost 3 stone in weight. We believe that the care in the ward with respect to medication and feeding was negligent.”
Another letter states:
“I had a similar experience when my mother spent some time in hospital. Registered blind and suffering with dementia, she was left hungry, thirsty, dirty, frightened and lonely until visiting hour. She also fell more than once and the staff were quite rude to us when we queried why she was complaining of being in pain.”
Another letter says:
“Myself and my family have also experienced similar treatment in the case of my late mother. She suffered from dementia and was admitted as an emergency following a fall at her care home. At the age of 82 she survived the surgical procedure but the care she later received was abysmal. We spent most of the valuable visiting times ensuring she was kept hydrated and feeding her the meals just left in front of her. After a few days we noticed she was deteriorating and despite repeatedly questioning staff, we found they were avoiding us.
After 6 days we were informed that her deterioration was due to the fact that she had been given not only her medication, but also that of the patient who occupied the bed before her (including the contraceptive pill). My mother died shortly after discharge.”
Finally, I want to highlight the case of an RAF veteran of the second world war who now has vascular dementia:
“Right from the very start with his admittance to the emergency ward there has been a lack of communication and understanding of his condition and care needs. Staff in the induction ward had no comprehension of his dementia and informed me that my father was violent and disruptive. Not only has his condition deteriorated but the level of care is absent
He has been left in a bare bed, naked in his own excrement, excrement ground into his fingernails, left without a blanket (there were no blankets available in the hospital). If for whatever reason we cannot attend he is not fed, his tablets were not given to him and left on the table.
My father is an RAF Veteran of the Second World War. He did not serve his country or pay his taxes for 43 years of continuous employment to approach the end of his days in a filthy, poorly administered establishment.”
I ask the Minister this: can we really call ourselves a civilised society?
I am sure everyone who listened to Ann Clwyd describing on the radio the terrible passing of her husband will have been moved, and all the accounts she has given this afternoon are certainly appalling and unacceptable.
I want to be concise, so I shall touch on only a few key points. My first point is on training for care assistants, a topic the right hon. Lady talked about. After I was first elected to this House some 30 years ago, several years passed before I first heard the word “Alzheimer’s”. At Christmas I would visit nursing homes in my constituency, and they were mostly full of spry widows in their 70s, but it is now impossible to get into a nursing home or residential care home in my constituency unless one is suffering from severe Alzheimer’s or dementia. As a consequence, many more people with mild dementia are now living at home in the community, being looked after by carers.
We must greatly expand the number of care assistants in three environments: first, in hospitals. If we are to have a graduate nursing profession, we also need to ensure that caring assistants see that they have a vocation— that they are part of a profession and they have a set of skills. We also need to ensure that there are sufficient well-trained and motivated care assistants in nursing homes and residential care homes. For a long time nursing homes would recruit staff from overseas, very often from India, the Philippines or eastern Europe. They would train them, and then in due course those people would go and work for the national health service. Because of various changes to migration policy, however, that is no longer possible. Thirdly, we have more people with dementia and mild dementia living at home, and they also need proper care and support from care workers.
I raised this issue with Ministers earlier in the year, and my hon. Friend Norman Lamb kindly gave me a comprehensive response:
“We are doing lots of work with the sector to grow the workforce. We are, for example, aiming to double the number of social care apprentices to 100,000 by 2017 and expanding the current care ambassador scheme to promote a positive image of the sector.”
I have to say that I do not get the feeling that there are currently 50,000 apprentices in the social care or care worker sector, and I do not get a sense of there being many social care apprentices in my patch. That may be because they are not promoted as such, and how does one recognise a social care apprentice or a qualified social care worker in a residential care home or hospital?
The Minister rightly says that the Government acknowledge the importance of training and qualifications in supporting workers in their roles and in improving the quality of care services, and the Government are spending £285 million each year on training and developing the care worker work force. This may just be my view, but, again, I do not get a sense of how that is being demonstrated in outputs. I say to the Minister that we need a clearer focus on the training and development of that work force. We have made nursing a graduate profession but we must also ensure that those who are not graduate nurses—care workers in our hospitals, in our nursing homes and in the community—have a similar sense of vocation and similar training and apprenticeships. They need to be recognised as qualified care workers, and we must continue to invest in that work force.
As the right hon. Member for Cynon Valley said, compassion is key to all of that. When my mother and her generation trained as nurses, they saw compassion as an essential part of their vocation; that was inherent in being a nurse.
I wish to give a further anecdote. My mother trained as a nurse and she said to me that on the first day in her job she was taken by the matron to the bed and told, “This is your world. The patient, and nothing else, is what you are there to look after. I want to know exactly what is happening with each and every patient in your care.”
That was absolutely the case. There are occasions when one is just going to be out of touch on this, but hospitals are changing. When I was young, my father was a consultant and he had three wards. He was responsible for them and each had a sister, who was identifiable and accountable, as were the staff nurses. Everyone was accountable and everyone knew what was happening. Hospitals are changing, and in some ways medical technology means that things move a lot faster: for example, hysterectomies can now be day cases. However, people are staying longer in other parts of hospitals. As my hon. Friend Tracey Crouch said, a large number of people in hospital are also suffering from dementia, and hospitals, as well as treating the acute problems of such people, need to respond to that. They need to work out where those people go once they leave the hospital. Very often someone’s dementia is not spotted until they are in hospital.
My mother, too, was a nurse. Sadly, at the end of her life, she ended up in hospital far too frequently, and at the very end she also had dementia. She would say that the nurses would never have been allowed to work on the wards that she worked on, because they treat conditions, not people—that is the problem. They no longer see the person in the bed; they see only the condition. Until that focus moves back to the person and their needs, and away from the condition and the diagnosis, we will not get the change we desperately need.
I entirely agree with the hon. Lady. Many of us took part in a Westminster Hall debate earlier this week on palliative and end-of-life care, when similar points were made. Sadly, all too often, what we read in our national newspapers demonstrates the desperateness that is occurring, as does the fact that the right hon. Member for Cynon Valley received 1,000 letters and e-mails in response to her tragic circumstances. This culture change in nursing needs to be reversed, because we must get compassion back into the NHS.
The second point I wished to discuss was carers, as I co-chair the all-party group on carers. It is estimated that 670,000 people in this country have dementia and the number is due to double in the next few years. As has rightly been said, most of us will either suffer from dementia or will know someone who will be a sufferer and so will be a carer at that time. One frustration for carers is that they do not get recognised as being carers, which is extremely frustrating, particularly when they are dealing with the GP of the person they are looking after—their loved one. I intervened on Hazel Blears to say that part of that frustration has arisen because GPs have been slightly in denial about people with dementia, because they are not sure what to do with them when they make the diagnosis.
However, I am pleased that the National Institute for Health and Clinical Excellence has proposed that GPs should follow three new indicators on caring for people with dementia. First, GP practices should be examined on the
“percentage of patients with dementia with the contact details of a named carer on their record.”
GPs must, therefore, diagnose someone with dementia because otherwise they will not know that they have a carer on their record. The second indicator is:
“The practice has a register of patients who are carers of a person with dementia.”
The third indicator is:
“The percentage of carers (of a person with dementia) who have had an assessment of their health and support needs in the preceding 12 months.”
There was criticism in some of the national press of the Prime Minister’s determination to ensure that people get a proper diagnosis of dementia if they are suffering from it, but unless people get such a diagnosis—unless GPs face up to the fact that their patients have dementia and start to care also about the carers of these people, by making sure that they get carers, assessments and so on—we will never get the qualitative and quantitative changes in how society is run to allow us to face up to a revolution, which has happened in the lifetime of many of us, in the number of people living in our society with dementia. This issue is going to grow.
I was very impressed by what the right hon. Member for Salford and Eccles said about Salford being a dementia-friendly community; many of us must go back to our constituencies and look at the challenge dementia poses, because, in comparison, my patch is simply in the foothills of that. Over the next few years, we will all have to try to make sure that we have dementia-friendly communities.
I meet a lot of carers. I do not have the experience that some hon. Members have, but the one that struck me about so many of these carers is that they are deeply dedicated. It would be really good if they could be considered more professional. After all, we think of doctors as being in a profession, and nurses definitely have a profession. There is now a requirement for a profession of carers that is widely recognised and accepted in society. Does my hon. Friend think that that has merit?
I do. I have been trying to encourage organisations such as St John Ambulance to think about providing training for carers. Some people find that, overnight, their wife or husband has a stroke or serious fall and they find themselves as the carer, and others must deal with a gradually deteriorating situation such as dementia. Such experiences are frightening and the people involved often have to grapple with bureaucracy, the health service and so on. I am sure that if it were possible for local training to be provided for carers, a lot of these people would feel much more empowered and much more competent. The question is finding the organisations that can deliver such training.
Does my hon. Friend agree that one key thing that also must happen is ensuring that Departments also demonstrate a lead on tackling dementia? Alison Seabeck and I have been very impressed by what HMS Drake has been doing; the people there have been instrumental in Plymouth in fighting for more dementia awareness, including among Departments.
That was an extremely good point, and it was one made by my right hon. Friend Paul Burstow in opening this debate; every Department has a part to play in tackling dementia. Nobody would immediately have thought of the Ministry of Defence as having a role to play in tackling dementia, but every Department, as part of collective, joined-up government, needs to consider what it is doing on dementia.
The last point I wish to make relates to research, attitudes and so on. One of the most depressing things about dementia is going into residential care homes and seeing people sitting doing nothing, staring at the wall. That is desperate. I have little fear of death—death at the worst can be eternal darkness—but I have a total fear of getting dementia. It must be a sort of living death for as long as one has it.
A number of organisations are coming forward with ideas of how to improve, if not people’s memory, how they can cope with dementia. An organisation with a strong following in Oxfordshire is the Contented Dementia Trust. Some of its work is supported by the Royal College of Nursing, and Oliver James’s book, “Contented Dementia”, is one of the best-selling books on dementia in the UK. The Contented Dementia Trust has a particular way of helping people with their memory, because from a carers’ perspective dementia, once diagnosed, is best understood as a person’s failure to store coherently the facts of what has just happened in their life—although associated feelings are stored—whereas facts stored long before the onset of dementia remain relatively intact and potentially useful. That is why when one goes to see people with dementia they can tell in graphic detail what they did during the second world war or their childhood, but they cannot say what they had for lunch. The Contented Dementia Trust has worked out a method that, it believes, helps people with that.
I hope that somewhere in the Department an evaluation of the various systems has been undertaken with an open mind, to consider what works. Clearly, what is required is consideration of how to stimulate people with dementia so they do not become part of the living dead. As my hon. Friend the Member for Chatham and Aylesford said, we want to ensure that those with dementia can live with dignity and can live lives of the best quality. That does not mean being stuck in a chair in a communal lounge all day between meals, perhaps getting some stimulation or perhaps not getting any. They require stimulation, help with their memory and the sorts of activities that the right hon. Member for Salford and Eccles identified as taking place in various day centres in Salford.
We all need to share and develop the practices that work best, to ensure that people do not get proprietary about there being one correct way of dealing with dementia. We must all recognise the limits of our knowledge. One of the desperate things about dementia is that those who suffer from it cannot tell us what is happening in their lives, as if they have moved on to another planet and cannot come back and tell us what is happening to them. It is a one-way journey and they cannot help us—we can only sense whether they are happier or more contented. I hope that Ministers and officials will consider the work of organisations such as the Contented Dementia Trust with an open mind.
The debate highlights for us all the sheer scale of the challenge over the next 20 to 50 years. It must continue to be a national priority if we are to get the compassion and care that every one of our constituents and loved ones deserves.
It is an honour to follow the contributions we have heard in this high-level debate from every right hon. and hon. Member in the Chamber. I must declare an interest from the start, as my husband suffers from dementia.
I worked some time ago for what was known as The Project. I, as the lead social worker, and a community mental health worker did joint assessments of people who had been diagnosed with dementia. That joint assessment was critical in ensuring that people got the right quality of care. I cannot emphasise enough how valuable and important those joint assessments were, because we saw the world from two totally different perspectives. We saw the person in the round. We saw totally different things and, when we came out, we never ceased to be amazed by the different clues and issues that we had picked up. It meant that the person received a different—and higher—quality of care.
Sir Tony Baldry talked about social care workers. We were very fortunate. The Project was funded by the local authority, which was the old Mid-Glamorgan county council, and the health trust, so a lot of money was put into it. We were given our own group of social care workers—we recruited and trained our own social care workers to give them an intensive knowledge and understanding of what dementia was, of the many forms of dementia and of how it would manifest itself. We also taught them about fear: the fear of carers and families of not knowing the world they were entering into. We taught them to give people information so that they knew what the future would hold, how their condition might progress and how to look for the changes and steps they were approaching, as well as where the change was coming.
In the age of the internet, everyone can become almost an expert, but if you use the internet you can become very frightened because there is too much information and it just scares you. You need a connection to professionals who give you a feeling of being held and being walked through it at your own pace as you, as an individual carer of an individual person, go through the trauma of dementia. You also need advice about money—golly gosh, do you need that advice—about the benefits you can access and about how you are going to afford this. I have had to convert my home into a mini-hospital. A lot of my furniture has gone, and I now have a downstairs bathroom and an extension built on to the property. You need to alter your life around the person you are caring for.
Treatment is not available for everyone, but you need to know what the experts are saying about the best way forward for you as a carer and for the person suffering from the condition. Education is essential not just for the caring community but for the professionals you interact with all the time. The worst thing carers suffer from is isolation. A number of times, when I spoke to people who were faced with dementia in a professional capacity, they told me the worst thing was the isolation. They said, “If someone has cancer, people are around all the time, but you get a diagnosis of dementia in your family and people disappear.” I found that true, too—not totally, but it is certainly there.
There are provisions that society has put in place, and I shall talk about the advance power of attorney later, but communication skills seem to have disappeared.
People simply do not know how to talk to people with dementia. Even when someone has quite profound dementia, there is often a way in. There is still a person in there and it is our job, as professionals, to find that person—to get in there and find some way of doing that.
I have wonderful carers who look after my husband—they are absolutely amazing. I have two people who work only for me and they look after my husband full time. They have allowed me to carry on with my job and they have allowed my husband to carry on having a life. They take him to the theatre, they take him out for lunch and they take him out for walks. They make him laugh. We communicate with him in all sorts of ways: we draw things and we write things down. His capacity for movement is now extremely limited, but he finds a way at least to say yes or no. We still insist that he makes decisions. We do not make the decisions for him; he has to make them and he must be party to them. I have stood in front of him and said, “I am not making this decision: you will tell me. Do you want this?” And he has laughed—it has to be said that he has had that in his life for a long time, but it is still there and he still finds somewhere that way of nodding, of squeezing my hand, of holding the pen and writing on the paper. We can still get that. It drives me crazy when I see nurses and professionals who will not take the time to do that.
I have been very fortunate. I have a fantastic GPs surgery, which won an award for the quality of the care that it has given to carers and to its patients. It makes a huge difference if you know that you can reach out to your local medical community and it will reach back to you.
I am very fortunate that I live in Wales because the cost of care in Wales is capped. I urge the Minister to look at what Wales has done in relation to the capping of care. It makes a difference because in addition to paying for your social care needs, you also have to pay for all the other things that you might need, such as my downstairs bathroom and the changes that I have had to make to my home to make it feasible and possible for a man who can no longer walk to access the dignity that he deserves—having the chance to be clean every day, accessing the privacy of the toilet, accessing a shower so that he feels clean and fresh and feels like a human being.
As a carer you become very reliant on the kindness of strangers. That has been true in my case. I will remain profoundly thankful for the wonderful people who have entered my life. Also, there are people out there dedicated to research, and we need their dedication and their commitment. I am very fortunate. My husband has a condition that many people do not know about; there are many dementia conditions that people do not know anything about. He has a condition called Pick’s disease. It is associated with motor neurone disease. His mother had motor neurone disease.
The research into Pick’s disease is coming out of Manchester, University College London and Cardiff university. I am fortunate in that I have close links with Professor Huw Morris, who is the lead in Cardiff university, and I know that huge strides are being made to identify the cause of Pick’s disease. A huge family of 38 members in Gwent, who have Pick’s disease throughout their family history, have made a huge difference. Families want to be engaged in research. They want to make a difference. They want to know that their experience will change the future. I urge the Minister to take time to talk to families about what they think they can contribute not just to the change in care, in treatment and in people’s attitudes, but to the change in medical research. Often families want to be part of that.
I have advance power of attorney for my husband. We were together with Dr Morris, who turned to me and asked whether I would be willing, when my husband died, for his brain to become part of the research. I said, “I’m sorry, I’m not making that decision. Steve will make that decision.” And he did. He wanted to be part of that. He wanted to contribute something. He did not want it to have been in vain. It is important that we respect the dignity and the right of the individual early on in their diagnosis to be party to simple questions like, “Are you willing, if there is an opportunity for you to give cell samples, blood tests, organs? Will you do that?” People have to be asked those questions.
People have to be asked early on, “Do you want to know what is happening?” You have to have some quite brutal and painful conversations and it is only fair. Some hon. Members have talked about GPs not wishing to make a diagnosis. It makes me laugh when I see the figure of 43% non-diagnosed dementia cases. How can we even know it is 43%? We do not even know that. Part of the reality is that GPs need to talk to carers and ask early on, “How do you two want to play this? Do you want me always to be brutally honest with you or do you want some protection from what is happening?”
We have to find a way of being more honest and more mature and not patronise people with dementia. We have to keep that person in their life, central to their life and central to their family for as long as it is possible. It is only then that we can hold our heads high as a decent society, as a caring and compassionate society, and make dementia something that we are no longer afraid of, but something that we fight.
It is a pleasure to follow Mrs Moon. I pay tribute to her thoughtful and emotional contribution. I pay tribute also to the right hon. Members for Sutton and Cheam (Paul Burstow) and for Salford and Eccles (Hazel Blears) and to my hon. Friend Tracey Crouch for securing today’s debate and for their equally thoughtful contributions.
I shall focus my remarks on my area, Pendle, and the Lancashire Care NHS Foundation Trust’s current consultation on dementia care services across the county. In my constituency there are 1,114 people diagnosed with dementia, compared with 1,060 people in 2010. As we all know, dementia can affect anyone. It is not just an old person’s illness and we know that there are hundreds of different types of dementia, so getting the correct diagnosis is one of the biggest challenges wherever one lives in the country.
My maternal grandmother, Mary, suffered from dementia brought on by a series of strokes. Although I was only young at the time, I remember going to visit her in Withington hospital in Manchester, where after any particularly bad period she was given six weeks’ assessment. I remember the locks on the doors to the ward, for patients’ own safety, and watching as the grandmother
I knew and loved slipped away from us. However, for many I have met in Pendle the emotional heartbreak is even worse, with husbands and wives diagnosed with this terrible condition in their mid to late 50s, their hopes of an enjoyable retirement together dashed, their dreams shattered.
Thankfully, the support available to dementia sufferers has improved significantly in recent years. In my constituency, although some people have raised concerns about getting the correct diagnosis from their GP, we have Memory Services, based at Maple house in Burnley general hospital, to which many people are correctly referred. With the help of Lancashire county council and the Alzheimer’s Society, East Lancashire Community Dementia Forum runs a dementia café in Colne on the fourth Thursday of every month, at the Arcadia café on Windy Bank—the importance of dementia cafés and the roles they can play has already been mentioned. Last May, I went along to the café, which runs from 2pm to 4pm, and found that providing information, advice and refreshments in a relaxed and friendly environment was a great idea for both those suffering with dementia and their carers.
In August, I was also pleased to attend a meeting of the Alzheimer’s Society’s carers support group at Walton lane community centre in Nelson. We discussed a huge range of topics, including respite facilities, the hospital beds situation, pathways to diagnosis, the difficulty for Alzheimer sufferers of qualifying for blue badges, disabled facility grants, day care and standards of care, among many other topics. Following the meeting, I took up several of the broad points with the NHS, Lancashire county council and Pendle borough council and pursued a number of individual cases. In the same month, I also attended the East Lancashire Community Dementia Forum at Brierfield library, when the focus was on short breaks and respite care.
Let me turn to Lancashire Care NHS Foundation Trust’s consultation on specialist dementia care services in Lancashire. The consultation opened on
However, the consultation document goes on to state that there were trends over the past three years of reduced admissions, readmissions and lengths of stay from the population in central Lancashire. If that could be replicated across the whole county, it suggests, the demand for specialist in-patient services could be expected to decrease to the point where those admitted would make up a much smaller group, and it is likely they would only be those detained under the Mental Health Act.
On that basis, the trust proposes two options. Option 1 is to reduce the existing 65 specialist dementia in-patient beds across four sites in Lancashire to just 30 such beds on a single site. That single site would be in Blackpool, which could not possibly be further away from my constituency, which is in the Pennines on the Yorkshire border. Option 2 is to have 40 dementia in-patient beds on two specialist sites, one in Blackburn and one in Blackpool. Option 1 gets three pages of glowing support, whereas Option 2 gets two pages, almost a third of which points out its “Issues”—or should I say, “Disadvantages”?
I have in my hand the consultation document, which is available in all libraries in Pendle, Ribble valley and the rest of Lancashire. It even goes so far as to have a wonderful diagram showing the two options available—Option 1 includes a nice little flower, whereas Option 2 has a mucky bit of grass. Now, call me a cynic, but I remember a similar document, ironically entitled “Meeting Patients’ Needs”, being published under the previous Government. It led to our local accident and emergency department at Burnley general hospital being downgraded, despite massive and cross-party public opposition. Although I am a massive supporter of the work done by Lancashire Care, sadly, the consultation document strikes me as very similar. When reading it, I cannot help thinking that the decision in favour of Option 1 has already been taken and that the consultation is all about getting the public to rubber stamp it.
I, for one, will not be voting for Option 1. I will not be supporting the relocation—given the location of Blackpool, it can hardly be called centralising—of all specialist dementia in-patient beds, for a range of reasons. Primarily, the location is in no way central to the population served. It would be almost impossible for friends and family to get to without a car, and even then it would be a very long drive. Given the distance, it would be almost impossible for contact to be retained between the dementia sufferer and not only their family, but their community care team.
We are talking about only a small number of people who would need to use these specialist in-patient beds, but the reduction from the current 65 beds to 30 beds is too much, too soon. The Blackpool option, if approved, would be up and running in 2015, and even the consultation document admits that current usage of the 65 in-patient beds across Lancashire stands at 46, or 70% utilisation. I appreciate that redirecting resources from in-patient services to community services will help to reduce dementia admissions, but with growing dementia rates and an ageing population, just 30 beds for a county the size of Lancashire seems too few. The lack of information provided on how community services will be enhanced with redirected funding also gives me great concern.
In Lancashire, there are already at least 17,600 people aged 65 or over with dementia, and these numbers are expected to rise to more than 25,600 by 2025. We are also seeing increasing numbers under this age being correctly diagnosed with dementia. After speaking to a number of local GPs and local health commissioners in East Lancashire, I know that many of them, too, will be supporting the option of two sites with 40 beds between them rather than one with 30. I hope that other clinicians, people with dementia and their carers will also support this option and respond to the consultation before it closes on
Nothing I say will equal the power of the contribution of my hon. Friend Mrs Moon—a personal account that I am sure will resonate far beyond this place. I congratulate members of the Backbench Business Committee on choosing this important topic for debate and praise the spirit in which Members in all parts of the House have engaged with issues of dementia.
This topic is particularly close to my heart. Anyone who has watched helplessly as a loved one battles with dementia, often forgetting your name and your relationship to them, knows the agony that is felt and the feeling of hopelessness. As people will know from their own experiences, it is all the more painful when it is a close relative, especially when, as in my own case, it is your own mother who is suffering from this cruel condition. Words cannot begin to describe the heartbreak of seeing a vacant expression etched across the face of a person once so full of vibrancy as they struggle to fathom what is going on or why they feel in such a strange state of confusion.
As I was coming to terms with my own mum’s condition and the fact that this condition had stolen her mind, I was left with the same unanswered questions that thousands are now asking. Why was she not diagnosed earlier? Why did not my brothers, sisters and I recognise the signs earlier? Why was there not better advice on the different treatments available? Why was the support that she received from relevant authorities at best patchy but at worst totally inadequate? My mum was not lucky enough to have had the expert advice, care or treatment that is available today when she died.
We can ill afford to kick social care into the long grass and avoid the realities of an ageing population that will undoubtedly present challenges for dementia health care professionals in future. With no new treatments having been released on to the market for 10 years, it was right for the Prime Minister to guarantee money for research by the Alzheimer’s Society following the work of the national dementia strategy presented to this place by my right hon. Friend Alan Johnson and rightly highlighted by Paul Burstow in his opening speech.
Today I want to talk about ways in which the city of Liverpool is sourcing innovative treatments for dementia. It is estimated that the number of people in Liverpool with dementia will rise from 4,382 in 2010 to 5,209 in 2021, ranking the city third highest in the north-west. Alarmingly, of those in Liverpool who were suffering from dementia in 2010, only 51% had actually received a diagnosis. That means that almost half of our city’s dementia sufferers were unknowingly living with this debilitating condition. That is why in our city we have decided to tackle dementia head on as part of Liverpool’s decade of health and well-being, which was officially launched in 2010.
Although most hospitals treat dementia patients by using a group of medications called—I wrote this down earlier thinking it would be easy to deliver in Parliament— cholinesterase inhibitors or the drugs donepezil and memantine, in Liverpool we have tried and successfully tested the use of art and culture in dementia treatment. Our non-pharmaceutical approach to dementia treatment is a unique model and one that other cites and regions across the country may wish to follow as they cope with increasing demand on decreasing resources.
After Liverpool’s highly successful year as the European capital of culture in 2008, we worked with international partners to collate evidence that proved that art and culture have the potential to improve well-being and have a positive role to play in mental health care.
Museums and art galleries are the gatekeepers to history. They play a crucial role in society, which is to protect and preserve what has gone before so that we can learn for the future. During our evidence-gathering we received a report entitled, “Museums of the Mind”, which encouraged museums to think about the role that they could play in their local communities with regard to mental health issues more broadly. National Museums Liverpool recognised the growing problem with dementia in our city and decided that it wanted to work specifically on the issue, drawing on the expertise of the Museum of Modern Art in New York, which ran an internationally acclaimed programme where gallery staff engaged with individuals living with dementia. And so House of Memories was born on Merseyside.
The scheme is training and delivering programmes built around the objects, archives and stories held in the Museum of Liverpool. The idea is to provide social and health-care staff with new skills and resources to share with people living with dementia and to promote and enhance their well-being and quality of life as a potential alternative to medication.
As the total cost of dementia to the UK economy rose to a staggering £23 billion in 2012—a figure that is unsustainable in an age of austerity that has been extended to 2017 by this Government—the work of National Museums Liverpool is a blueprint for other cities and regions to follow as we look to improve dementia care and reduce the cost to the NHS. As always, however, funding pressures are endangering the future of such innovative programmes. I believe that Liverpool’s non-pharmaceutical approach can and should be adopted by other cities and regions in the United Kingdom, thereby saving millions of pounds for the NHS.
One of the most worrying aspects of dementia care is the fact that public awareness of dementia remains scandalously low and that we as a society almost ignorantly allow dementia to be excused as nothing more than the ravages of old age. Liverpool therefore began by drawing together a partnership of major businesses from a variety of sectors that went beyond health care professionals and included many organisations from our thriving cultural sector. This meant that Tate Liverpool, the Bluecoat and the Liverpool biennial festival worked alongside Liverpool universities, Age Concern, BBC Radio Merseyside, the police and fire services and charities such as Dare to Care and Crossroads Care.
Last year the decision was taken by Liverpool Hope university, in conjunction with the chief executives and managers of Liverpool city council, the Alzheimer’s Society, NHS Merseyside, Mersey Care NHS Trust, Royal Liverpool and Broadgreen University Hospital NHS Trust, Liverpool Community Health NHS Trust and Age Concern Liverpool and Sefton, to dedicate 2013 as the year of dementia, as part of Liverpool’s decade of health and well-being.
Liverpool’s ability to make a difference for dementia patients would not be possible were it not for the excellent work of the Alzheimer’s Society. When I was the lord mayor of Liverpool, I chose the Alzheimer’s Society as one of my five sponsored charities and was extremely proud to award it with its largest ever cheque at that time of £115,000, in recognition of the vital work it does in our city.
My hon. Friend is making an incredibly innovative speech about developments in Liverpool. He mentioned the Alzheimer’s Society. Does he agree that without the drive, commitment and imagination of the Alzheimer’s Society, we would not be seeing the current progress and momentum?
My right hon. Friend is right. It is not until somebody who is close to you needs the support of services such as those provided by the Alzheimer’s Society that you understand just how good and supportive they are. When I gave the Alzheimer’s Society that money as lord mayor, I also gave money to Alder Hey children’s hospital. It is much easier to raise money for sick children than for people whom some others see as just getting a bit old and going a bit loopy. That was one of the accusations against my mother. People said, “She’ll be okay, she’s just losing it a bit!” That is not the same thing as dementia. That is why it is important to raise awareness of dementia and why it is fantastic to see that this debate has been so well subscribed to.
In Liverpool, the Alzheimer’s Society facilitates services for dementia patients that use art and culture to assist sufferers and their carers in better understanding the condition. For instance, dance therapy is offered which invites
“movers and shakers of all ages to come and enjoy themselves and shake off the shackles of dementia”.
Additionally, multi-sensory stimulation is provided through art therapy and music therapy, which stimulate emotional, social and cognitive connections between dementia patients, their carers and their families. There is also a memory clinic, like those mentioned by Tracey Crouch, in Walton in my constituency, which is a weekly meeting that offers support, advice and guidance to sufferers and their loved ones.
In other words, Liverpool is dedicated to a creative approach to stimulate rather than medicate dementia patients wherever possible, and to prolong their quality of life as much as is possible. I hope that Members will use the example set by Liverpool to encourage similar partnerships across the cities, towns and communities in their regions. A recent participant in National Museums Liverpool’s House of Memories scheme recalled a lesson that they had learned as a member of the programme, which MPs may wish to consider on leaving this debate:
“The House of Memories scheme has enabled me to come into the world of the person living with dementia, rather than expect them to enter mine. After today, my approach will be very different.”
By changing the emphasis of dementia treatment to a more pioneering approach such as the one successfully tried and tested in Liverpool, we can begin to change the stigma of dementia and improve patients’ lives. In doing so, we can aim to educate sufferers about the advantages of owning up to the problems that they face and improve the rates of early diagnosis, while at the same time ensuring that the wider public are more aware of the early signs of the condition. Only then can we, as a society, forgive our collective ignorance and really begin to support our patients and dedicated carers in tackling this country’s fastest growing health priority.
Like others, I pay tribute to those who secured today’s debate: the Backbench Business Committee, the right hon. Members for Sutton and Cheam (Paul Burstow) and for Salford and Eccles (Hazel Blears), and my hon. Friend Member for Chatham and Aylesford (Tracey Crouch). The debate is about a hugely important subject of which many Members will have personal experience.
Many of us are aware of the scale of the issue: dementia will affect 1.7 million people by the middle of the century, probably double the figure now. It is probably one of the biggest challenges that this Government—and future Governments—will have to face, and will be particularly important in Wales where the percentage of people aged over 65 is higher than anywhere else in the United Kingdom.
The right hon. Member for Salford and Eccles paid tribute to the commitment of the Prime Minister, who launched the dementia strategy last year, and there is a commitment to increased spending on research. That is not anywhere near enough, however, and I am certain that in future our commitment to tackling dementia will have to be greatly increased.
I want to make five or six brief points, some of which are from a Welsh perspective. As we know, the matter is devolved, but as the right hon. Member for Sutton and Cheam said, where there are differences between the parts of the United Kingdom, lessons can be learned from one Administration by another, and devolution can be a sort of test bed. Different attitudes are developing in Wales and we may be able to learn things from that.
The issue I will mention first because it is so important is early diagnosis. Levels of diagnosis in Wales are particularly low—only 37.5% of people with dementia are diagnosed, which is far lower than in other parts of the United Kingdom—and of course access to new drugs and treatments is simply not available to people who have not been diagnosed with dementia.
Many of us—probably most who will speak in this debate—have personal experience of the issue, and one thing that is common to most is that we do not realise when someone is suffering from dementia. We may think there is a degree of slowness but we do not realise what they are suffering from. The second time it happens in a family people respond much better because they know pretty much what to expect. Those suffering from dementia can be crafty because they are desperate to hide their condition; in some ways there is embarrassment about it and they do not want people to know. Without experience, dementia is difficult to identify, so early diagnosis must be an aim for anyone concerned with dealing with it.
The second issue, which was touched on earlier, is training for nurses. There is a general issue at the moment about basic care in the health service—that was touched on last Tuesday during the debate on the Liverpool care pathway, and Ann Clwyd also mentioned it. To my mind, such training is particularly important for people in the acute health services, many of whom are elderly. Many people go into hospital because they have had a fall although they are also suffering from dementia. The level of disruption and disturbance caused when they go into hospital can completely disorientate sufferers, and the rapid onset of serious dementia is much quicker and more radical in such a situation. It is important that those working in acute health services are trained in identifying and dealing with the dementia aspect of illness, as well as with the actual condition such as a broken hip or bone.
My third point is about Parkinson’s disease. I am involved in my local Parkinson’s disease charity. I do not know whether the trauma of Parkinson’s disease brings on dementia or whether it is the other way round, but we know that people suffer from Parkinson’s disease for quite a long time before it becomes publicly apparent. Many people will go into hospital and seem to suffer from dementia without anyone realising that they are suffering from Parkinson’s. That disease may come on more quickly—the trauma may cause it—so it is vital that in hospitals and care situations patients’ conditions are regularly assessed to see whether they are suffering from Parkinson’s disease, and that they are not just dismissed as a dementia patient while another illness is completely ignored.
I touched earlier on the liaison between Governments in Wales and England but that may apply to other Administrations as well. Without making any negative political point, there is a difference in approach. The Welsh Government are much more suspicious of the private sector than the UK Government—that applies particularly to the provision of social care. The Welsh Government’s view is that social care is delivered far better by the public sector, but, generally speaking, social care is delivered by the private sector.
The relevant Committee has considered that, and there is a very good chance that there will be new, different approaches in Wales—they could be based on co-operatives or they could be community based. They might work in an urban situation, but it is important that the Government in Westminster and the Government in Wales are aware of what is happening, and that they learn about good practice and what might work.
My final point—perhaps I will be the only hon. Member to make it in the debate—is on the Welsh language. Many who are elderly and frail in Wales spoke only Welsh until they were seven, eight or nine years old—in those days, people became involved in education at that age. Today, people often go to monolingual, Welsh language schools. Up until the ages of seven or eight, that is the only language they speak, and we know that people suffering advanced dementia revert to their childhood language.
I visited an esteemed former Member of the House and House of Lords who suffers from dementia. Towards the end of his life, he was able to speak only Welsh. Previously, he had been able to speak English, but at that stage, he could speak only Welsh. I acted as an interpreter. That is important in care homes in Wales. Such people are suddenly completely isolated. Very often, they cannot speak even to their spouse.
I rise only to confirm exactly what the hon. Gentleman says. I worked in specialist rehabilitation in Gorseinon, which is part of Swansea where the Welsh language is much more prevalent. Families would come in, and often, I would say to them, “Speak to your family member,” which was usually a mum or a dad, “in Welsh, and tell me what you want.” It is true that going back to the language of childhood often makes communication continue for much longer than speaking the adoptive language. However, that has implications in our multicultural society across our ethnic communities, and we must bear it in mind. No matter where a person comes from or whatever their culture, we must be able to provide communication in their language of childhood.
I thank the hon. Lady. I was going to expand my point on the Welsh language into the impact on people who speak other languages, as so many do. People’s reversion to the language they spoke as children came as a huge shock to me. I found that the great parliamentarian I went to see was unable to communicate with his wife because she did not speak that language—it was the only one he could speak. It was a strange experience. In that home, nobody could speak Welsh, which was a tragedy. Hon. Members often discuss and debate where the Welsh language should be available, but it should be available in care homes in Wales, and particularly in ones that have a dementia wing. Having somebody who can speak Welsh is important.
A spin-off point from that is on people who have moved away from Wales—the diaspora. They could fall ill in another part of the country. Traditionally, they would come home to where they are originally from and continue to see family and friends, but they could finish up not being able to communicate with people where they live. There is a case for work between the Governments in England and Wales—the availability of the language of youth applies to other parts of the UK—on helping to repatriate people to deal with the problem. Not being able to communicate with anybody, including family, must be incredibly difficult.
Dementia is a huge issue and there are many aspects to it. I hope I have touched on one—language—and one or two others that have not been covered by other hon. Members.
I congratulate right hon. and hon. Members on securing this important debate. The speeches have been moving and thoughtful. Today has demonstrated the best of Parliament, with MPs coming together and contributing to how we can resolve the dreadful issues around dementia. I am grateful to have the opportunity to speak today as, in addition to representing a constituency in Oldham where, in 2010, 2,318 people were diagnosed with Alzheimer’s, the most common form of dementia, I have personal experience of being the daughter and carer of someone with Alzheimer’s. I would like to bring that personal experience to the debate.
Does the hon. Lady agree that those who have experienced these sorts of incidences first hand can bring to debates a remarkable amount of insight to, and understanding of, these conditions? Does she also agree that it is important for us all, especially Government, to listen to those experiences, so that we might be able to learn from them?
I am very grateful to the hon. Lady for her intervention. I totally agree.
My mother was 64 when she was diagnosed and was still working. She told me that she stood in the middle of the office where she worked and could not remember why she was there. Not only did she find it abhorrent to be diagnosed with this devastating degenerative disease, but the financial consequences of having to give up her job were a severe blow too.
To watch her decline was nothing short of heartbreaking. Two years after she was diagnosed, the penny dropped for me when we went to a restaurant and she was given a menu. As my hon. Friend Mrs Moon said, it is so important to make sure that people with dementia still have as much control over their lives as possible. She looked at the menu, and kept on looking at it again and again. She did not understand what she had to do with the menu—one of the practical consequences of the disease. She became a different person—not a better or a worse person, just different. As much as I loved my old Mum, I loved my new Mum too. I will remember until the day I die the first time she did not recognise me, which was about four years after she was diagnosed. She was very distressed, because she knew that I was someone of importance to her, but she did not know her relationship to me. Needless to say, the pain I felt was—well, I cannot explain.
My mother went from being a brilliant, vivacious, caring woman—a woman who invented the term social justice before it entered the lexicon—to a woman who gradually lost her ability to communicate, feed or toilet herself. In the last year of her life, she became wheelchair-bound and in her final month completely bedridden. She was unable even to lift her head and the end came shortly after she lost her ability to swallow.
In many ways we were very lucky because my mother remained physically well for so long, but also because up until the last year of her life she seemed relatively content, smiling and laughing, particularly around animals and children, as she had always been. I agree with my hon. Friend the Member for Bridgend that people with dementia understand far more and we have to find ways of communicating with them. My hon. Friend Steve Rotheram also talked about different ways of engaging with people with dementia.
Unfortunately, the care arrangements in the final year of Mum’s life, and ultimately the circumstances around her death, can only be described as shameful. She was in the US at this stage. After much consideration,
I have decided to talk about this now because dementia has such consequences for everybody in this country and across the world. Up until 2011, my stepfather, who is 81, had been Mum’s main carer, although he paid for a carer to help Mum get up in the morning in their New York home. I used to provide respite for him during my leave, but the physical and emotional toil and strain was taking its toll and he began looking for caring support.
That support was offered by an acquaintance of his who offered to provide care for my mum for an agreed fee. Over a few months, unbeknown to me or my family, the new carer moved into the house, got access to their finances, sold their home and drove them more than 800 miles away from my stepfather’s family in New York to South Carolina, where they knew nobody. Within a week of the move, my mum was admitted to hospital and we were told that she had days to live. When I arrived, I was shocked to see their circumstances: they had moved from a comfortable family home to what can only be described as a hovel, and the female carer had gained almost complete control over their lives. I alerted Adult Protective Services in South Carolina about my concerns for my mum’s and stepdad’s welfare on
My mum’s story is not unique. The stages in her decline and her and my family’s experiences are being replicated in this country and across the world. My story happened in the US and, based on my discussions with adult protection teams in this country, I am confident that the casual response from Adult Protective Services in South Carolina would not be reflected here, but there are still lessons to learn. We must ensure that the regime we set up around carers protects people with dementia from exploitation. I fear that, as has happened in other areas of the world where personal health budgets and individual social budgets have been introduced, some of the moves towards personal budgets here will lead to fraud and exploitation.
I could speak for hours about what I believe we need to do, but I would like to raise just a few points. First, as individuals, families and communities, we need to be more aware of the disease, as has already been mentioned. The odds are that most people will be affected by this disease. It might not be themselves or their family, but it might be their friends or neighbours, and we need to do more to protect ourselves against the disease. The Alzheimer’s Society is a wonderful resource, as we just heard, for information and support. We need to keep active and healthy, not smoke and so on—all the messages we know so well.
We need to do more on research. I fully support and recognise what the Government are doing in increasing research funding—it is such an important area—but the moneys being dedicated are paltry next to the scale of the problem. We need to address that. I was pleased to hear what my right hon. Friend Hazel Blears said about the Wellcome Trust funding, and I hope that we can pursue that more.
Finally, we need to do far more at health and care service levels. As I said, 2,318 people in Oldham were diagnosed with Alzheimer’s in 2010 and more than 800,000 across the country. By 2020, it is estimated that this number will have increased to 1 million. Most worryingly, however, as we have already heard, that is an underestimate and is probably half the actual scale of the disease. Apart from the human cost, £23 billion is spent treating and caring for Alzheimer’s patients every year. This will rise to £27 billion by 2018 and will continue to increase. There is already a care crisis in this country, with cuts to adult care services in the NHS, and this will only get worse, not better. Care services are already at breaking point. How will families cope with Alzheimer’s? It is a ticking time bomb. I urge the Government and the Opposition to work together to reach a cross-party consensus on how we fund and deliver national care service, and that must include the Treasury teams. We cannot afford to kick this issue into the long grass any longer.
My hon. Friend Tracey Crouch hit the nail on the head when she made the point that everyone knows somebody who has been affected by dementia or some form of Alzheimer’s. I have a stepmother who is very elderly now—she is 93 and is in a home. The last time I went to see her, she was woken up and she looked at me, squawked and went straight back to sleep again. That is very sad—it is incredibly sad—for one simple reason. This was a woman who got a degree at Oxford in 1938, at a time when women did not get degrees. She then became an interpreter at Bletchley park during the war and played a significant part in defending our country from Nazi oppression. For her to be in that position now is very worrying and concerning for all of us. I very much hope that she continues to have an acceptable life, and I am delighted that everyone there is most certainly going to be helpful.
I pay tribute to the hon. Members for Bridgend (Mrs Moon) and for Oldham East and Saddleworth (Debbie Abrahams), who must have found it very difficult to talk about their personal lives and experiences. I commend them both for being able to do so in this environment and for getting through it. May I also say what an honour it is to share a platform in this debate with Alison Seabeck? I suspect that, between us, we will find ourselves repeating each other somewhat, although I am in the fortunate position of going first.
The issue of social care is becoming increasingly important. There has been an enormous amount of press attention on how people are cared for in the latter years of their lives. However harrowing the stories may be, they provide us with an opportunity to speak about social care and lessen the stigma that surrounds death and dying. Dementia is already a significant issue and a growing concern that should not be ignored.
I am delighted to say that I represent a constituency in a part of a city that has a really good reputation on dementia, especially through the university. An enormous amount of research is done; indeed, I am for ever getting telephone calls from Ian Sheriff—for whom I have an enormous amount of time—who rings me up and gives me advice on how we should handle this issue. However, I was surprised to find out that there are currently more clinical trials into hay fever than into some common forms of dementia. When I heard that our mutual friend the Health Secretary had announced that spending on dementia research would receive a £22 million cash injection, I was therefore incredibly grateful. More funding will most certainly need to be made available to excellent bodies around the country such as the Alzheimer’s Society and to universities such as Plymouth.
Plymouth university conducts a great deal of research into dementia and this policy area. In September the university held a very good conference, which it asked the Prime Minister to attend. Unfortunately he could not come, but we will see whether we can have another go later. Any help that the Minister, my hon. Friend Norman Lamb, can give to encourage the Prime Minister to come and participate in the dementia conference would be helpful. Indeed, his lead in the dementia challenge has given the whole thing an impetus. The university also does a lot of work on community engagement and raising awareness. Indeed, shortly after Christmas I went to Stoke Damerel community college, which has done a lot of work on encouraging youngsters to become more involved in community engagement with dementia. May I also pay tribute again to HMS Drake, which is taking a big lead on dementia and ensuring that this happens elsewhere in the Ministry of Defence?
In Plymouth there are around 3,200 individuals with dementia. That figure is forecast to rise by 35% in the next 10 years, but this is just the beginning. The diagnosis rate is 39%, which it is estimated will increase by 27% before 2021. That means that a large number of people in my constituency do not have access to the care and support they need on a daily basis. The new NHS mandate commits to drive up diagnosis, which can only be a good thing for both sufferers and their families. I know that the Government want the clinical commissioning groups and the NHS Commissioning Board to work together on that aim, and I would welcome more information from my hon. Friend the Minister on what plans are in place to ensure that that happens, so that the lives of sufferers and their carers can improve.
GPs are on the front line when it comes to driving up diagnosis rates. They express their concern about mistaking the symptoms of dementia for old age. In some cases, they do not make a diagnosis of dementia because they feel that to do so is futile. I am aware that the Department of Health has put forward the case for a reward through proactive case finding, which is due to be consulted on this year. Is there a timetable for that consultation to begin? The sooner we start to diagnose those in need, the sooner we can start to help them.
Earlier this week, I participated in a debate on the Liverpool care pathway. We had an interesting discussion, and real concerns were raised. I told a story about a constituent who came to see me about her father. It had been decided to put him on the Liverpool care pathway, but the family were concerned because they knew nothing about that until they were told about it by one of the car park attendants at the hospital. The process was supposed to last for two days, but it went on for 12 days, and the family were very concerned about that. Will my hon. Friend the Minister have another look at that issue, just to make sure that such cases have been included in the review of the LCP?
A number of excellent facilities exist around the country, especially in Plymouth, and I want to pay tribute to St Luke’s hospice, and to the hospice movement in general, for doing a tremendous job. They are certainly appropriate places for people to spend the last few days of their lives. Given that the report on Stafford hospital is to be released shortly, however, it is clear that dementia sufferers often do not have the dignified death that we would expect for them. I am aware that we are all mortal, although I have wondered whether God might make an exception in my case, and whether I might be here for ever and a day. I know that that is not going to happen, however.
It is important to ensure that, when dementia sufferers die, they are able to do so with dignity and without pain. The more work that we can do to ensure that that happens, the better. Vulnerable people need to be properly looked after, as do their carers. We need to ensure that we talk to the relatives as well, to ensure that they understand the processes involved. None of us—politicians or anyone else—likes to be ambushed, and it is important to help those family members to work their way through their suffering as well.
My hon. Friend is making some good points. Those who care for dementia sufferers need respite care, but we do not always provide for that as well as we should. I am keen to see more respite care being provided for those who care for people with dementia.
I agree with my hon. Friend. This is also about the families, who have to deal with dementia on a daily basis.
Given the appalling events at Stafford hospital, appropriate checks and balances must be put in place to ensure that people with dementia are given the proper quality of care in all hospitals. Further, it should become standard practice that the demands of someone with dementia should be listened to. It is incredibly important that we get better at listening to what they, and their families, are saying. Dementia is a complex illness, and it is often difficult to assess its onset. Whenever possible, however, conversations should be held with the individual and their loved ones about what is happening and the process that is involved. Such conversations would be useful in helping the family through the process.
Dementia is now one of the top five causes of death in the United Kingdom, and it is disappointing that the health and wellbeing boards are being a little slow to consider people’s needs. About 800,000 people in the UK have dementia, and that number is going to go up. It is said that more pressure is being put on the national health service. I do not think that is right. I think that we are making enormous strides in order to deliver better health care for our elderly. It is because we want to do more that our national health service is facing increasing levels of challenge.
For those with dementia, the changes to long-term care are crucial. I am delighted that the Government are looking at trying to take forward the Dilnot report, to which I made my own submission—I have a copy here or I could e-mail it to the Minister. That report must be viewed as a blueprint for how to go forward.
There has been increasing debate with the Treasury since the 1940s. Let me remind everyone of what happened in 1947 when the national health service, of which we are all very supportive and proud, was first set up. The other half of the equation was long-term social care. Over the last 10 or 15 years since I was a candidate for Plymouth, Sutton as it then was—it is now Plymouth, Sutton and Devonport—I have spoken about the divorce of social care from the national health service. If I have a heart attack or have cancer, I will have to deal with it one way, but if I have Alzheimer’s, Parkinson’s or dementia, it will be considered to some extent as being a separate challenge. I believe that we need to bring the two much closer together.
I have some concerns about using insurance. Every time I have had to make claims—on my car insurance, for example—I have always had some difficulty with my provider. We need to look at that, but we need to ensure that people do not see all their savings just disappearing into a black hole. That is something that we need to deal with as a country. There is a danger that the amount of money individuals are asked to pay for their care will remain far too high. We cannot hide from that in our ageing society.
At the beginning of my time in the House, I wrote a paper on the strategic defence and security review, in which I said that there were two important matters of which we needed to take notice. The first was that more money needed to be put into defence—I continue to say that—but the second was that we should devote more money to long-term care for the elderly. That was my No. 2 priority; it has to be incredibly important.
I welcome the Government’s decision to take on the global health challenge—a priority after years of neglecting this growing problem. I welcome the Prime Minister’s commitment and the leadership and extra support he has provided for people with dementia in carrying out their everyday tasks. That shows a shift in the wish to combat the stigma that surrounds dementia and to achieve greater awareness of the illness. We need to learn, too, from the ethnic minority communities that tend to work much more closely together with their families in providing care.
My hon. Friend is making an excellent speech. I want to support his point about the Prime Minister and the issue of stigma with a quote from Professor Dawn Brooker, who helped found the Association for Dementia Studies at the university of Worcester. She said:
“Stigma and fear are the biggest enemies of achieving” progress on dementia. She continued:
“What makes the PM Challenge so important is that it says very clearly that he is not ashamed or fearful of standing up and talking about dementia. If he can do this then it makes it safe for every politician and leader to do the same.”
I believe Members of all parties have shown the same courage in taking this issue forward today.
My hon. Friend is absolutely right, and the same issue applies to mental health, about which I have also spoken at some length in this place. We need to break down these taboos and move on.
I very much hope I have not taken all the thunder of the hon. Member for Plymouth, Moor View. There must be joint responsibility by Government health boards and staff in the health service to ensure that the diagnosis of dementia and the quality of care improve significantly. That way, we can show that we are on track for the future.
It is a pleasure to speak in this Back-Bench debate on dementia. I congratulate my right hon. Friend Hazel Blears, Paul Burstow and Tracey Crouch on securing the debate and on their excellent contributions. I join others in saying how much I appreciated the moving and personal contributions from right hon. and hon. Members this afternoon. It must have been very difficult for them to talk about their personal experiences, but they did it very well.
My right hon. Friend the Member for Salford and Eccles has worked unstintingly on this issue, locally and nationally. Like her, I want Salford to become a dementia-friendly community. I share her pride that Salford contains one of the 10 national demonstration sites, in the Humphrey Booth centre in Swinton, which has its own day centre, the Poppy centre. I also agree with her that more needs to be done to improve our community services, to reduce hospital stays, to increase rates of diagnosis of the condition—many Members have mentioned that today—and to end the stigma that is so often associated with it.
I want to talk specifically about carers for people with dementia. As others have pointed out, about 10% of our 6.5 million carers are caring for a person with dementia, which means that at least 2,000 of our 22,000 carers in Salford must be in that position. The nature of the symptoms of dementia clearly makes providing such care particularly difficult. People with dementia can grow agitated, and they may wander at night and call out when asleep, which means that the carers themselves get little sleep. The personal care needs of those with dementia can be very great, as has also been mentioned today. Many people are performing a caring function for more than 100 hours a week. As we have heard, family members caring for a person with dementia must cope with personality change and loss of memory. Those very serious changes cause them to suffer feelings of grief and loss, similar to the experience of bereavement but before bereavement.
Dealing with that heavy caring work load also means that shortcomings in the provision of appropriate care services will be keenly felt. If carers do not have confidence in the quality or appropriateness of care, they will not have the confidence to take the respite breaks they so badly need. In 2007, when I was parliamentary champion for carers week, I visited some local carers and talked to them about our local services. One of them, a remarkable woman, was caring for her husband, who had vascular dementia. When she and I introduced ourselves, she told me “I am his nurse.” That was the change that had come about in her relationship with her husband.
The woman also told me how impossible it was proving to be to find adequate respite care locally. On one occasion, a week’s respite care had been arranged, with her husband staying at a local nursing home. Owing to a catalogue of problems at the start of the week, she then had no confidence that the home would manage her husband’s care properly, and she began to visit him there every day. By Wednesday, when family members found him lying unshaven in a soiled bed, she said that enough was enough, and brought him home. The end result of all her worries during those four days was that she developed eczema and had to visit her GP. That was her one week’s respite care.
One aspect of that woman’s life that she did praise was the support given by Crossroads Care, which is now part of the Carers Trust. Twice a week it provided two hours of respite care that she trusted. During one two-hour slot, she did her shopping at the local supermarket; during the other, she went to play bingo. When I asked her what we politicians could do for her and what changes she wanted to see, she told me that she wanted regulators who inspected care or nursing homes to ask carers for feedback about their experiences, and that, for herself, she wanted occasionally to have respite care lasting longer than two hours, so that she could wander around the shops rather than racing to get back home.
That was more than five years ago. I wish I could record that the situation for carers for people with dementia had improved radically in that time, but, given the increasing number of people with dementia and the crisis in the funding of social care—which has been touched on by several Members—the amount of respite care per individual carer cannot be stepped up dramatically, which is a pity. Crossroads Care told me that in 2008 it had provided 9,000 hours of respite care for 398 carers. This year it will provide some 13,800 hours of respite care for 567 carers. As I said earlier, we probably have some 2,000 carers for people with dementia, so the support is reaching only just over a quarter of the people who might need it.
The Health Committee’s recent report on our accountability hearing with the Care Quality Commission concluded that the regulator inspecting our care homes still did not have the confidence of carers, families and residents. It recommended that feedback from carers and other members of the public should start to be regarded by the commission as “free intelligence”, and that the regulator should act swiftly when complaints were brought to light.
In 2007 I introduced a ten-minute rule Bill, the Carers (Identification and Support) Bill, which required health bodies
“to identify patients who are carers or who have a carer” and take steps to promote their health. I have introduced similar Bills subsequently, including, on
I agree with what the hon. Lady is saying, and, indeed, we might mention institutions such as the National Institute for Health and Clinical Excellence in this context. When I worked for the Alzheimer’s Society, we had the experience of trying to persuade NICE that evidence from carers about some quite difficult-to-research things such as behaviour and daily living skills was valid evidence when collected systematically and at scale—and, indeed, just as valid in its way as the evidence from things such as clinical trials and cognitive scales?
Yes, and probably more so. The key concept here is that of the expert carer. Reference has been made to the professional carer, but I think expert carer is the right term. I shall talk about NICE shortly.
My Bill stated that health bodies should promote and safeguard the health and well-being of carers. They should ensure that effective procedures exist to identify patients who are carers or who are about to become carers, and ensure systems are in place to make sure that carers receive information and advice and that general medical services are rendered to patients who are carers. The reason for that is that carers will ignore their own health. They will entirely put the person they are caring for first, and put their own health to the back of the queue.
I was interested to see that this week NICE started a consultation on the topics prioritised for development in the quality and outcomes framework for 2014-15. Sir Tony Baldry discussed the three indicators, the first of which is:
“The percentage of patients with dementia with the contact details of a named carer on their record.”
The second indicator is:
“The practice has a register of patients who are carers of a person with dementia.”
The third indicator is:
“The percentage of carers (of a person with dementia) who have had an assessment of their health and support needs in the preceding 12 months.”
I would have welcomed this development, as the identification and support of carers is a crucial issue, but I have some comments to make on the indicators. I doubt whether the QOF is the best way to achieve progress, and in some respects this issue is more a higher priority. We currently give three QOF points to GP practices that keep a register of carers, but they could, in fact, have a small and static register of carers that they did not consult on, improve and develop. They would still get three points, however. The task of properly identifying carers and making sure they get the advice and support and the health checks they need is certainly worth more than the £400 that these three QOF points averages out as being worth. Is that what we think these tasks are worth? They surely must be worth more than that.
I have taken advice on this matter and I suggest that a better solution would be to tier the indicator payment based on the percentage of carers identified. Sufficient QOF points should be given properly to recognise the achievement of the task as well. It will take a number of people quite a bit of time to perform it, particularly if it is performed at the higher levels of achievement. Carers trusts tell me it is hard to find GP practices where more than 3% of carers are identified. The figure should be about 10%.
I fully support the indicator measuring the percentage of carers who have had an assessment of their health and support needs in the preceding 12 months, as that is a very important development, but why does it cover only carers of people with dementia? In my constituency there are carers of people who have had a stroke who have a very heavy, and very similar, work load to carers of those with dementia. It would be better to specify a small range of long-term conditions that lead to carers having a heavy caring work load, and they should be identified and receive assessments.
I want to record my thanks to organisations in Salford and elsewhere that do a wonderful job in supporting carers of people with dementia. I have mentioned the Humphrey Booth centre, and Age UK in Salford has a dementia support service. Those services are very important. They provide buddy cafés that support both people with dementia with activities and carers with respite. A buddy café lasts for five hours. That is a welcome period of respite for carers. There is a drop-in café at the HBC as well as a carers training programme, and it offers vital information, advice and advocacy services. It is a key partner in Salford, providing better quality services to people with dementia.
Last, but definitely not least, I should mention Salford Carers Centre, which plays a key role in identifying carers and helping them with information, advice and support. I believe that our practice in identifying carers, both in primary care and acute settings, is making a real and vital difference to helping our carers to care. I have invited the Minister, just as I invited his predecessor, to come to Salford to see what we do. The key other part of that now is Crossroads Care, which provides vital respite care.
I will finish on the issue about the funding of care, as many hon. Members have done. The right hon. Member for Sutton and Cheam referred to the moving speech made by a carer at the meeting earlier in the week to launch a pamphlet he wrote. In her contribution, that carer described the difficulty of managing catastrophic care costs for a person with dementia. She said:
“A £35,000 cap, as proposed by Dilnot (or even £50,000 or £60,000) could give me back my life. Our liabilities would be over. I could concentrate on my frail mum instead of the practical and emotional burden of single-handedly selling our family home. My mother has an incurable disease that has robbed us both of our lives; must it rob us of our assets too?”
I could not put it better than that, so I will not try to do so. As other hon. Members have said, we must consider setting the cap, up and down the country, at a lower level than £75,000, which will help people such as this carer. I have outlined a number of ways to support the carers of people with dementia, and I hope we give them the priority they deserve.
I listened with great pleasure to my hon. Friend—I hope I can call her that—Barbara Keeley; I have the privilege of serving as her deputy on the all-party group on social care. I wish to echo the point she has just made, which was also so well made by my hon. Friend Tracey Crouch, who played such an important role in securing today’s debate.
This is a very important occasion for us to show the collective will of hon. Members—there are so many here today—to hold the Government’s feet, and indeed the Opposition’s feet, to the fire. We need urgently to come to an all-party agreement on how to fund properly the future of care and social care in our community. I also wish to thank Hazel Blears for her contribution. I am sure that she will indulge me as I thank the chair of the all-party group on dementia, Baroness Greengross, who has dedicated her whole life, both in the other place and outside Parliament, to raising issues affecting older people, their families and carers so well. I thank the right hon. Member for Salford and Eccles for her part in securing this debate, which gives us such an important opportunity to de-stigmatise dementia and other mental illness.
I remember only too well that when I was a child growing up people would not talk about cancer; it was whispered about or called “the C word”. Thankfully, we can now openly talk about cancer, which is to the great benefit of sufferers, their families, their loved ones and their carers. We must quickly move to the same position for people suffering from dementia, Alzheimer’s and a range of other mental health conditions.
I agree very much with my hon. Friend that cross-party support on how to provide long-term care for people with dementia is essential, because our population is ageing. Better medical care means that people are living longer, but of course it also means that we will have more people suffering from dementia. It is right that we accept that situation as being part of society and as something we must deal with, but we must have a way of providing the funding so that we do not take away everybody’s assets to pay for treating dementia.
My hon. Friend makes his point well. I know that other hon. Members have very worthwhile points to make, so I do not wish to take up too much of the limited time available. However, I wish to make just a few points about how we in Cornwall are rising to the Prime Minister’s dementia challenge. It is right for us to set strategies nationally and to agree nationally on the overall frameworks to tackle one of the greatest challenges of our century. However, it is also important to look for the solutions locally. We should set the strategies nationally but enable everybody in communities around the country to come together to find their solutions. As Paul Burstow rightly said in his opening remarks, we will all have to rise to the challenge. Every single part of society and every part of the public sector has its role to play. Indeed, as my hon. Friend the Member for Chatham and Aylesford said, the private sector, including supermarkets and other organisations in the public domain, has an important role.
What have we done in Cornwall of which I am so proud and which I want to share with right hon. and hon. Members? Let us start with the NHS, because when people seek a diagnosis that is where they start off on their journey with dementia. We have set up the Kernow clinical commissioning group, which is very successful and has got off to a flying start. It has attracted a large sum of money from the dementia challenge—well over £500,000. What is it doing with that money? It is working very effectively in partnership with other parts of the public sector, voluntary organisations and other parts of the NHS to ensure that there is an integrated, joined-up approach in Cornwall.
The CCG has targeted an issue mentioned by many Members, which is the need to ensure that everybody working in health and social care is properly trained, from carers through to doctors and nurses in the acute sector, to ensure that they are aware of dementia and how to talk to and relate to the people with this condition with whom they come into contact, as well as their families, friends and informal carers. The group is also using the money to ensure, among other things, that from the moment of diagnosis of dementia through to the end of life, sadly, there is a named individual available for that person and their family and carers. Obviously, it is early days as it just got the funding in November, but its ambitions are very important and will make a real difference to the quality of life of families in Cornwall.
Another issue that has been mentioned today is the lack of care from some nurses in parts of the acute sector. I want to share with hon. Friends a great initiative in the Royal Cornwall hospital, which is our only acute hospital in Cornwall. The friends of the Royal Cornwall hospital, who have worked so well with nurses, doctors and managers over a long period, are addressing some of the issues raised today. They have a very good system of mealtime companions, who are specially trained volunteers who work alongside care assistants and nursing staff. When the staff are too busy, they provide the extra time, care, compassion and consideration that needs to be given to a range of patients, including those with dementia, to ensure that they have a drink and something to eat. The hospital is also open to family members and others at mealtimes. I recommend that hon. Friends take that issue up with their hospital trusts and use the example of Royal Cornwall, which has clearly found a way around the problem.
The voluntary sector and society as a whole will have a hugely important part to play. Like many other hon. Members who have spoken, I am involved with the memory café in my constituency, in Falmouth. There are 24 other memory cafés in Cornwall and they are really important. People with dementia and other memory loss conditions, their families and their carers can come along to a safe, supportive environment, have some fun and do some interesting activities, talk to each other and get information. That is very important.
In Cornwall, we are fundraising for Admiral nurses. Those Members who have Admiral nurses in their constituencies will know the very important work they do to support families in much the same way as Macmillan nurses support cancer patients and their families. Admiral nurses provide an invaluable service for people with dementia and I shall be working hard alongside those who are fundraising so that we soon, I hope, have Admiral nurses in Cornwall.
I could talk about a lot of things, but for the sake of brevity let me simply say that many of the activities I have mentioned must be co-ordinated and planned. I want to reassure my Opposition colleagues that that is possible. Our health and wellbeing board in Cornwall has got off to a really good start. It works very closely with public health providers and all the different parts of the community, from housing to environmental health, to pull together a strategy for dementia and turn the good ideas and aspirations into action. I see the reforms to the NHS giving a great deal of power to doctors, other health professionals and people across the public sector to come together to work in partnership to deliver local solutions that work for communities. Salford is quite different from Cornwall and we all need to work together to find what works in our communities.
A great deal of good work has been going on in Cornwall and will continue in years to come, but I am not complacent. We are a part of the country with a fast- ageing population and have yet to find ways to diagnose dementia accurately. We have some of the lowest levels of detection of dementia. I will work hard with colleagues in Cornwall in all sectors to drive that up.
Like the hon. Lady, I am keen to foster the sense of consensus and cross-party working on this essential issue, but the elephant in the room in this debate is the severe cuts that have had to be made to local authority social care over the past three years—nearly £1 million in Salford. I wonder how in her community in Cornwall, which will be facing similar issues, she is dealing with the impact of substantial cuts in day-to-day care.
I thank the right hon. Lady for that question, because it gives me a good opportunity to praise Cornwall council. Undoubtedly all local authorities are facing tough decisions as a result of having to make cuts. There have been no politics in this debate so I will not go on to say why we are faced with the mess and why we have to make those difficult decisions, which I am sure we would rather not have to make. Cornwall council has not cut at all its expenditure on adult social care.
It gives me great pride to be able to stand up here and publicly thank Cornwall council for that. It is making sure that every penny that it receives from the Government—every single penny of the extra money to integrate NHS services with Cornwall council’s adult social care service—and the entitlement money and the money for carers’ respite is being spent. The council is not cutting front-line services for the most vulnerable people. The current settlement coming from the Government is increasing the amount of money into Cornwall for further improving and integrating the quality of care between adult social care and the NHS.
Those of us who have been around this subject and who have been campaigning on it for years, which includes many of the Members in the Chamber, know that the future lies in joined-up, integrated services. It is not about throwing ever more millions of pounds at the problems. It is about being smarter and wiser and linking all those services around the patient, the carers and the families. That is what is going on in Cornwall.
To summarise, I am in no doubt about the challenges that we face and I am not at all complacent. We need to build on the very good momentum and leadership shown by the Prime Minister on the issue to ensure that every family and everyone suffering from the condition gets the best possible care from us.
Most Members in the Chamber will have received e-mails and letters and read in the media that MPs and people at Westminster have no idea what is going on in the real world. I hope people have been listening to and watching this debate and have heard the highly emotional, very personal, incredibly thoughtful speeches that we have had in the debate today, which give the lie to those cynical comments from those outside this place. I thank the Backbench Business Committee for allowing time for the debate and Paul Burstow for opening it. His expertise and interest in care in relation to dementia are well known and noted, and I thank him for taking the opportunity, along with many others, to highlight one of the more important health issues facing the country.
Unlike almost every other Member who has contributed to the debate, I have not had anyone in my close family suffer from dementia—I know people who have, but they were not immediate family members—so my speech might sound a little more clinical than others we have heard. We probably all know someone who has been touched by dementia. As we live longer, virtually every family will be affected and, as with cancer, we will have to learn to cope with an illness that a century ago people would not have lived long enough to experience. Indeed, only 30 or 40 years ago—20 years into my life—we would not have experienced family members having that awful degenerative disease.
Does my hon. Friend agree that we must be careful not to make it sound as if dementia happens only to the elderly? Vascular dementia and prefrontal dementia affect young people. Certainly, prefrontal dementias tend to onset when people are in their 40s and 50s. We must not let the population of this country run away with the idea that dementia happens only to old people and that it is a consequence of old age, because that is not necessarily so.
My hon. Friend speaks with enormous knowledge and is absolutely right. My godmother died at the age of 56 from Alzheimer’s, as it was described then, although I suspect that it was something much more complex.
Our ageing population poses challenges, including how we discuss in a much more open and constructive way what has, in effect, been a no-go area. Cancer is a case in point. It is mentioned in hushed tones, in corners of rooms. Sarah Newton touched on that in her speech. Victims were often not told they had the disease. Dementia and Alzheimer’s have been treated in much the same way. As with cancer, I think that we are all learning not to be afraid of speaking about the disease. By doing so, we can better support those affected, their families and carers.
We know that the number of sufferers is going to rise. Oliver Colvile—we duplicated on this a bit—pointed out that the number is rising significantly across the UK. Indeed, it will probably rise to 1.7 million people by 2050. In Plymouth, probably around 3,000 people have dementia—I say probably because many people with dementia will not have gone to their GP and their families might not be aware of their condition. That brings us back to a point made by my hon. Friend Mrs Moon, because there are potentially so many people out there who are yet to be diagnosed. That is why such debates are so important in raising awareness. We cannot simply carry on sweeping the issue under the carpet. It is a little like hiding bills behind a clock on the mantelpiece: they do not actually go away; they just mount up. The same applies to dementia; caring issues mount up, and costs certainly will.
Dementia will cost the UK about £23 billion in 2013, yet dementia research is desperately underfunded, as we have heard. The Government invest about eight times less in dementia research than they do in cancer research. These are financially difficult times, but we need to ask whether we have that balance right. I welcome moves from the top of the Government to look at the priority dementia receives.
Dementia is a particular concern in the south-west. Figures show that 40,000 people across the region have been diagnosed, and Devon has one of the highest levels in the country, in part because of our demography—people want to retire there, so there is a significant number of older people. However, as my hon. Friend the Member for Bridgend has put me right, it is not just an older person’s disease.
I know from my constituency surgeries, as I am sure that others do, just how scary a diagnosis can be for patients and their families. We need to handle the diagnosis point with enormous sensitivity. My right hon. Friend Hazel Blears made that point extremely powerfully and clearly. Every family copes in different ways, but they all ultimately need support. Some may pretend that they do not—that they can get on, manage and cope—but that is not the case.
Carers tell me that they get stressed and worried when they are out with their loved ones. They are acutely aware that others do not understand the behaviour of the person they are with who is suffering from dementia. Shopping can be a simply dreadful experience. One carer said to me, “It would be so good to be able to go out shopping and not worry.” Tracey Crouch made a good point about that. I am delighted to hear that companies such as Asda are training their staff better to recognise and support customers who are having difficulties. I hope that other companies out there have heard that and will look at the excellent work that those companies appear to be doing.
Nor can we underestimate the pressure on carers’ mental health. They often struggle on in silence. We all know the type of person: they appear on the outside to be incredibly resilient, but in fact they are not. They need their needs to be fully understood, not only by the health service but by the people around them—those who work with them and live with them.
In Plymouth we are working towards becoming not only a dementia-friendly community but a dementia-friendly city. We have some superb people leading the campaign and taking the steps to move it forward, including Ian Sherriff and Dr Helen McFarlane from Plymouth university. We have councillors and officers on Plymouth city council, as well as a welter of voluntary organisations. We also have an accredited memory service. The diagnostic rate for the identification of dementia has seen a significant improvement following the work by Dr Cartmell to map a dementia pathway, which has provided GPs with a useful educational tool to support referral, diagnosis and treatment.
As we have heard from virtually every speaker, the early diagnosis of dementia is very important, as is the way in which society reacts to and supports those with the disease. People are helped to be empowered at a much earlier stage when they are better able to take important decisions about their care pathways. They are also enabled to share those decisions with the people closest to them, who may well be caring for them. Those affected should be able to take their own decisions for as long as that is feasible and possible. It is hugely important that they are able to take an informed view about their future life and lifestyle while living with dementia, guiding clinicians in the pattern of care wanted. Early diagnosis takes a certain tension out of the system, and we cannot overstate how important that is.
As I mentioned, in Plymouth we have lots of organisations working towards our becoming a dementia-friendly city. The hon. Member for Plymouth, Sutton and Devonport talked about the naval base, HMS Drake, where people have signed up to play their part in the Plymouth Dementia Action Alliance. Human resources policies have been amended to support service families, who may also be caring for somebody with dementia. Someone on the front line on a tour of duty in Afghanistan already has an awful lot to worry about apart from worrying about a relative, or somebody they are very close to, who has dementia. It is enormously important for them to be confident that that person is in good and caring hands while they are a long way away and out of contact.
The Dartmoor rescue team have also lent their skills. One might ask why, but I am afraid we have all heard these stories and all know people who have said, “A member of my family has left home and wandered off.” We have a young councillor on Plymouth city council whose grandfather has a habit of doing that and she often tweets asking whether anybody has seen him. The Dartmoor rescue team is bringing its expertise to bear not only by helping to track and find people, but by taking people for walks in areas they may be familiar with on Dartmoor and elsewhere.
As we have heard, the private sector is also buying in and schools such as Stoke Damerel have taken an interest, because children have grandparents who may be suffering. Helping them understand what is happening to their gran or grandpa offers reassurance.
I want to see the work that is being done in Plymouth to prepare us to be a dementia-friendly city come to fruition. I put on record my thanks to all those involved in the alliance who are pressing forward with that work. Importantly, I want every city in the UK to follow the lead of, and move in the same direction as, some of the country’s early pioneers.
I recently attended the opening of Waylands in Ernesettle in my constituency. It is a residential centre for people with varying stages of dementia. It is a well-thought-through development and I would hope to see more such developments being built to such a high standard. Everything has been thought through, including memory boxes and the colour of the walls. It is a superb facility. However, there is an issue—this has been touched on by other Members—namely the recruitment of staff with the right qualifications and attitude towards nursing and supporting patients with dementia. The centre tells me that it has been quite easy to recruit care assistants with good qualifications and the right attitude, but much more difficult to get properly trained dementia nurses. What is the Minister’s Department doing, alongside the Departments for Education and for Business, Innovation and Skills, to ensure that we have enough people with the right skills to meet that undoubted need? We also need reassurance that those people are properly trained. We do not want a recurrence of what happened in Stafford.
Patients with dementia cannot whistleblow, which is a real issue. If someone does not have a family around them to identify the problems they face, how will their voice be heard? As my right hon. Friend Ann Clwyd has said, too many people are alone in hospital who do not have people to take action to feed them. I cannot say how strongly I feel about the importance of good, compassionate nursing care to look after people with every need—and I mean every need—and ensure that they eat and live as long a life as possible, given their conditions.
We also need to take into account the fact that dementia sufferers have a range of other physical ailments. We need to learn and do better on the ways in which they are nursed and how clinical teams handle them. These people are very afraid, in strange circumstances, often alone and faced with strange equipment and various other things. I genuinely think that an awful lot more could be done to make their progress through the health-care system altogether more sensitive to their individual needs.
I look forward to hearing the responses of both Front-Bench representatives to this debate. I want a firm commitment to a long-term dementia strategy but, more importantly, we have to have a national solution for care and it has to be affordable. As other Members have said, the figures in the press this week seem to be excessively high, but I will wait to hear what the Minister has to say about that.
These are, as Charles Dickens put it, the best of times and the worst of times. It is a time of plenty; it is a time of difficulty. It is a time of great medical advancements, and yet a time of a greater number of dementia sufferers. It is a time of conflict on the Floor, and yet a time of shared priorities and shared understandings of the difficulties that we all face. Any person who wishes to understand the House of Commons should have been present today when, to be frank, we have seen the best of the House. The hon. Members for Oldham East and Saddleworth (Debbie Abrahams) and for Bridgend (Mrs Moon) gave the finest speeches that I have heard for some time, and the Under-Secretary of State for Health, my hon. Friend Anna Soubry made the best intervention by a Minister that I have heard for a long time and for which we will all be grateful to her. These things are remembered in this place.
Members of my family have suffered from dementia and anybody who has suffered from a brain tumour, as I have, will know of the insidious creeping of memory loss, the loss of brain function through neurodegenerative disease and the huge difficulties that those things entail. I am very fortunate that I had the operation, recovered and am, I like to think, better than I was previously. I believe that my experience gives me a unique insight into the early onset of the brain disorder that constitutes dementia. It is a terrible thing. It is a harrowing, upsetting and difficult thing to have to deal with.
I will speak about the reality in my constituency, but I am having to abbreviate my speech massively. Tynedale, which I represent, is a dementia-friendly community with well over 1,000 sufferers. It has outstanding GPs, care homes and hospices, and an NHS community that is doing a fantastic job. I pay tribute to Age Concern, Headway and the Alzheimer’s Society, which do a great job. I also pay tribute to homes such as Wellburn House in Ovingham, Helen McCardle Care’s Acomb Court, the Abbeyfield homes in Corbridge and Ponteland, and Tynedale Grange in Haltwhistle, all of which provide exemplary elderly care and do all that they can to assist those who are suffering from the onset of dementia.
Ever-increasing work is being done by the national health service. As I said at the outset, it is good that there is greater understanding of this problem and that attempts are being made—of course, we all want more to happen—to provide the analysis and research that are so desperately needed for a true focus on neurodegenerative disease. Surely the most difficult part for the Government is to have joined-up services. We can talk about individual good examples from communities up and down the country, but until there are joined-up medical services, provided on a multitude of bases to individual patients, we will always struggle. That is the most important thing for the Government to work on, even if they do nothing more.
The Prime Minister has had the guts to stand up and make sure that people understand that dementia is no different from cancer or heart disease—it is a fundamental disease and a killer. However, because it is unseen and intangible, it is difficult to comprehend the problems that it entails. I welcome the increased funding.
I want to make three points in my abbreviated address. The first is about the need for joined-up Government. There must be ways in which Government can advise, cajole, improve and give assistance to the various providers at the various stages in the system, such that all their individual efforts become a collective effort.
Secondly, I welcome the fact that intellectual stimulation is still seen as the best method of preventing degeneration in cases of dementia. In that respect, we must be careful not to become too accountant-focused in the provision of health care services. I made my name as a pro bono lawyer fighting the decision to close services at Savernake hospital. I regret to say that the previous Government were involved in that, but other Governments have done such things in the past. We have to focus on the parts of the health care system that are providing the intellectual stimulation that is the preventive in these matters.
Finally, I represent a community that contains one school with a catchment area roughly the size of the area inside the M25. West Northumberland is the least populated part of the country and rural health care is monumentally more difficult than urban health care.
I do not dispute that these matters are difficult everywhere, but if someone is two hours’ travel from a hospital or an hour from their local GP and has problems on an ongoing basis, it is immensely difficult to provide health care. The Government must bring their attention to bear on how they can assist NHS organisations in the provision of rural health care in the future, and on how to tackle this insidious and terrible disease.
It is a real privilege to have listened to so many excellent and moving speeches from both sides of the House. This is by far the best debate I have sat through since becoming a Member of Parliament and I feel very lucky to be part of it. I thank the Backbench Business Committee, and warmly congratulate Paul Burstow, my right hon. Friend Hazel Blears, and Tracey Crouch on securing this extremely important debate.
As we have heard many times today, dementia is a cruel and distressing disease that affects an increasing number of people in this country. Like many hon. Members who have spoken, I have seen the impact that dementia has had on my constituents and in my own family. Women in their 60s and 70s are seeing their once proud, sharp and vivacious husbands not only struggle to get up in the morning or go to the toilet, but to finish sentences and remember key points of their married lives together, and their hopes of having a great retirement with the person they love are fading away. Sons and daughters are trying to help their mums and dads walk, talk and feed themselves—just as they used to do for them—and coping with the terrible shock when their own parent does not recognise them or seem to know who they are.
Dementia is distressing not only because of the physical impact it can have on the person with the condition and the practical struggle that many families face in caring for their relatives, but because it affects something so essential to our humanity—our relationships with our families and the people we love and care for most. Relationships are based on memory and shared experiences. If memory fades and those experiences and relationships are lost, it feels as if the disease is taking away the essence of the person we love and therefore something fundamental about who we are too.
People are frightened of dementia because they fear it will destroy their minds and relationships as well as their bodies, and because they think that nothing can be done. That, however, is not the case. Although there is currently no cure for dementia, as many hon. Members have said, with the right care and support, people with dementia can enjoy a good quality of life, even in advanced stages of the condition.
Hon. Members have spoken passionately about services in their own constituencies and places they have seen. Last year I visited a day care centre, Dove House in Barnet, provided by the fabulous Alzheimer’s Society. The people there told me how going to that day centre and having stimulating, non-medicating help and support such as gardening, cooking, singing or music, had brought their loved one back to life in a way they did not think was possible, and also that they had got a desperately needed break and therefore their relationship had improved.
There is superb residential care for people with advanced dementia at Fountain Court in Wolverhampton, which I visited last year. It is run by an inspirational manager, Michaela Wilson, who demonstrates the kind of creative thinking mentioned by my hon. Friends the Members for Liverpool, Walton (Steve Rotheram) and for Bridgend (Mrs Moon), and many others. I will give two brief examples of that.
First, there was one resident who never took a cup of tea. Michaela Wilson was worried about that because people need hydration, but she saw that he kept tapping his pocket and realised, “Ah. He is used to having change in his pocket and thinks he is supposed to pay for this.” She gave him change every morning; he put it in his pocket, it always fell out, but he took a cup of tea.
There is a second example of such creative thinking. The home is brilliantly designed—lights go on when people get out of bed, and doors open. There was a yellow toilet seat because people with dementia recognise colour, but one guy kept getting out of the other side of the bed and going to the toilet in the bin. The staff were getting a bit annoyed, so Michaela Wilson said, “At least he recognises he’s supposed to go to the toilet somewhere,” so they put a second bin there. The man slept better and was more relaxed. It was a fantastic service.
The quality of dementia care is changing, but not quickly enough and not in enough parts of the country. Many hon. Members have said that we need to do for dementia over the next 10 years what we have done for cancer over the past 20 years. Above all, we need to give people hope that something can be done. That is essential in ensuring that everyone gets an early diagnosis, because people do not want to come forward if they believe that nothing can be done if they are diagnosed.
We must do even more to raise awareness of dementia and to tackle the stigma many people still feel, so that they are not embarrassed if their husband, wife, mum or dad butters the plate and not the toast in a café, or if they cannot order from the menu. We must transform information for families and say what dementia is, how it can affect them and what help and support is available. There are many different bits of information in different places, but for such a distressing condition, we need to bring it together.
NHS social care and voluntary services must work far better together—that point was made by many hon. Members, including Guy Opperman—so that families do not have to battle different parts of the system when they are already distressed enough. Care and support must be personalised to each individual and their family. Dementia affects people’s memory and the way to reach out to them is by finding a hook into that memory, so care and support must be highly personalised.
That has radical implications for the education, skills and training not just of nurses and care assistants, but of general practitioners and managers, who must hold their staff to account for the care they provide. That is particularly relevant in communication skills, as my hon. Friend the Member for Bridgend has said, and, as many hon. Members have said, we need further progress in dementia research.
The Labour Government began the journey towards delivering better dementia care—I am grateful that the right hon. Member for Sutton and Cheam recognised that. In 2009, we launched the first ever national dementia strategy, “Living well with dementia”, which began the process of establishing memory clinics, providing better training for GPs, and improving the quality of dementia care for people in hospitals.
In early 2010, we appointed the first national clinical director for dementia and commissioned a quality standard for dementia from the National Institute for Health and Clinical Excellence. The current Government’s dementia challenge builds on many of the improvements Labour introduced. I welcome the increase in funding for dementia research and the aim of creating more dementia-friendly communities. If the Alzheimer’s Society in Leicester, Leicestershire and Rutland is anything to go by, I am sure the Alzheimer’s Society nationally will do a superb job in recruiting and training volunteers as dementia friends.
However, we need to assess those initiatives against the wider and—I would argue—far bigger impact of the Government’s policies on the NHS and local council social care. Let us look at district nursing, which is just one essential aspect of better dementia care. Those vital nurses work alongside GPs, care assistants and other staff to help people who usually have dementia and another condition—co-morbidity and multi-morbidity are the big challenges we face. District nurses help people to stay healthy and well, living in their own homes, but 1,400—one in five of the total—have been cut since the coalition came to power. That is not good for patients, but it is not good for taxpayers either, because people with dementia end up in more expensive hospital or residential care when they cannot get the support they need to stay at home, which is what they want to do.
Delays in patients being discharged from hospital specifically because of a lack of NHS services in the community—this is not about social care, but about NHS in the community—such as district nurses have increased by 38% since August 2010. The delays cost the NHS £6 million every month.
If the problems and difficulties in the NHS are bad, those in social care are far worse. More than £1.3 billion has been cut from local council budgets for older people’s social care since the Government came to power. As my right hon. Friend Hazel Blears said, council budgets are being cut by a third. Adult social care makes up about 40% of that budget and is councils’ biggest discretionary spend. Any money that is going across from the NHS is not ring-fenced, so inevitably those services are suffering. Councils are doing their best to save money by changing the way care is provided and by working more closely with the NHS. Faced with the scale of cuts to council budgets, however, many have little choice but to restrict the number of people who qualify for help, reduce day care services and increase charges for vital support, such as home help and residential and respite care, if they are to balance the books.
That is having a real impact on people with dementia. We are seeing an increasing number of 15-minute home visits. They are simply not long enough to get a very frail and distressed elderly person with dementia up, washed, dressed and fed, and end up costing the taxpayer more. The Alzheimer’s Society says that one in five people with dementia are admitted to long-term care institutions earlier than would have been the case had they received the right support at home.
There is a dementia challenge, but we cannot tackle the crisis in dementia unless we tackle the crisis in care. That means addressing the current and growing crisis in social care and putting in place a better, fairer system for the future. This is not an easy thing to do, as Labour discovered when we were in government. We have welcomed Andrew Dilnot’s recommendations on long-term care funding as a step towards a better, fairer system. We initiated cross-party talks on this vital issue, which unfortunately broke down when the Government unilaterally issued their own progress report on funding care and support, but I want to state clearly for the record that if the Government were serious about those talks, we would be back in like a shot. We now see media reports that the Government intend to implement the Dilnot principles, but not until after the next election, and put a cap on care costs at £70,000 or above, rather than the £35,000 Dilnot recommends. Dilnot says that
“moving outside the range of £25,000 to £50,000 could mean that the overall reforms would fail to satisfy our criteria on fairness and sustainability.”
Capping care costs above £50,000 would mean
“people with lower incomes and lower wealth would not receive adequate protection.”
A £75,000 cap would not even help many families on middle incomes. The long-term care insurer, Partnership UK, says that a person paying the average cost for a single room in a nursing home in the south-east would not hit the cap for five years because that care is so expensive. The average length of stay in Bupa care homes is about two years. In other words, the person would die before they reached the cap. There is a concern that a £75,000 cap would not encourage people to take out insurance because the premiums would not be affordable. If these reports are true, will the Minister stop, think again and get around the table for cross-party talks, so that together we can put in place a decent, fair and sustainable plan for the future?
In conclusion, we need fundamental reforms to transform dementia care. We need one care system, not separate systems for people’s physical, mental and social care needs. We need care and support that is radically reshaped around the needs of individuals that involves their families and the wider community, and is provided by NHS and social care staff with the right skills, training and understanding. Like my right hon. Friend the Member for Salford and Eccles, my parents taught me the values of justice and fairness. In the century of the ageing society, we will deliver justice and fairness to people with dementia only if these reforms are made. I hope that that is something Members on both sides of the House will work together to achieve.
I would like to thank the Backbench Business Committee and every right hon. and hon. Member who has spoken, and pay tribute to the former Minister, my right hon. Friend Paul Burstow, for his dedicated work on the subject and to the work of the all-party group on dementia, which works tirelessly on a subject that, in the past, has been too much ignored but which, at long last, is starting to get the attention it deserves.
I cannot begin to do justice to the many extraordinary contributions made in the debate, so I commit to write to all hon. Members who have taken part to answer each of the specific challenges put to me, if I cannot deal with them now. A forum such as this—less combative than many of the debates on the Floor of the House—is the perfect place to talk about dementia. I have listened with humility to the contributions of many hon. Members and I completely associate myself with the comments of the shadow Minister: the contribution from Mrs Moon was remarkable. She spoke with authentic authority, having experienced all these problems—the isolation, the impact on the family and so on.
I have learned much in this debate, as a Minister learning my trade, and will take onboard much of what has been said. I should also mention the right hon. Members for Cynon Valley (Ann Clwyd) and for Salford and Eccles (Hazel Blears) and Steve Rotheram, who, along with others, paid tribute to the fantastic work of the Alzheimer’s Society, which I have seen in my own constituency. It is a brilliant organisation doing invaluable work. I totally agree also with the shadow Minister about the analogy with cancer. Getting to grips with Alzheimer’s has to be seen as the challenge of the 21st century. I am sorry I missed the contribution from Debbie Abrahams, but I have heard all about it and thank her as well.
There is no party political divide on dementia. There can be discussions about the funding of social care and so forth, but there is a consensus about what needs to be done. The work was started by the last Labour Government, who took a lead internationally in setting out a proper strategy for dementia, and this Government have taken on that strategy and developed it. I pay tribute to the Prime Minister for his personal commitment, as others have done. Whatever our political affiliations, beliefs or background, we all know that dementia is one of the most important health and social care issues facing society. It is also one of the most pressing. As mentioned, we know that dementia costs society about £19 billion a year. In 30 years, as the number of people with dementia doubles, even that vast sum will look like chicken feed.
As with all health and social care issues, however, we do people a disservice to reduce dementia to money and budgets. It is about much more than that; it is about people and how we treat them, about the individual with dementia, their families and their friends, all of whom have to live with the effects of what can be the most terrible of conditions, but a condition that many people can and do live well with. That is an important message to get out. It does not necessarily mean the end of the world. People can live well with it.
Dementia affects all of society. It is a universal concern. Study after study shows that it is the condition that people fear the most—more than cancer or anything else—so we need to be better prepared. The Department of Health is doing all it can to stitch dementia awareness into every part of the community—not just GP surgeries, hospitals and other health-focused places, but banks, supermarkets, bus stations, post offices and all the different forms of local public services, and the private sector too. The whole of society has to play its part in changing attitudes and making society dementia friendly.
All those places can become more dementia aware and dementia friendly, and if they do, people with dementia will benefit and live better.
That announcement was almost 10 months ago. I am pleased to say that since then there have been significant developments in each of the three strands in the Prime Minister’s challenge. Each has been run by a champion group that includes experts in their fields—Sir Ian Carruthers from the NHS, Sarah Pickup of the Association of Directors of Adult Social Services from social care, Sir Mark Walport and Dame Sally Davies from research, and Jeremy Hughes from the Alzheimer’s Society, as well as Angela Rippon. Those groups have looked at the current situation in their fields and identified priorities for improvement. They include changing how society views people with dementia, improving diagnosis rates and getting researchers to work together in pursuit of better treatments. Several hon. Members have mentioned the stigma of dementia. We face similar challenges in mental health generally. “Time to change” is a fantastic campaign, but the challenge is just as great with dementia. There is still an awful lot of work to do.
I would like to read a quick summary of what we have undertaken since last March. We have launched a new dementia friends scheme to make 1 million people more aware of what dementia is, helping to break down barriers between people with the condition and their local communities. The hon. Member for Liverpool, Walton and many others talked about the importance of raising public awareness; the dementia friends scheme can be an effective way of doing so. Indeed, I urge all hon. Members present to sign up—they can do it now by registering online—and become dementia friends. He made the point that public awareness was, in his words, scandalously low. I share that view.
We have set aside £54 million for the NHS to support dementia diagnosis in hospitals and now to ensure clinical leadership in hospitals. We have set aside a further £50 million to make health and care environments such as hospital wards and care homes more dementia friendly. The Government’s first mandate for the NHS prioritises dementia. We have launched a national advertising campaign to raise awareness, reduce the stigma attached to dementia and encourage people to contact their GP if they experience symptoms of dementia and have that difficult early conversation—the sooner it is had, the better for the person with dementia and their carer. We have developed a toolkit for clinicians to increase diagnosis rates—we have heard about the interesting work in Plymouth and how diagnosis rates have been significantly improved as a result of that clinical leadership.
Through a consultation, we asked the public what action they wanted to see and incorporated those views into the work of the three challenge groups—the hon. Member for Bridgend was absolutely right that people must be involved, engaged and listened to in dementia research. We have also supported the launch of the call to action to create dementia-friendly hospitals. Some 65 hospitals have signed up so far, but I take the view that every hospital in the land should sign up. I urge them to get on with it, because it is so important. Tracey Crouch and the right hon. Member for Cynon Valley gave powerful testimonies and told some deeply disturbing stories about what happens in some of our hospitals. That reinforces just how important this is and why the Secretary of State is right to be clear that the quality of care is just as important as the quality of treatment.
The hon. Member for Bridgend talked about the crucial importance of communication between care staff, nursing staff and relatives. Sir Tony Baldry talked about getting compassion back into the NHS. There is actually an enormous amount of compassion in the NHS, but there are sometimes situations where it falls below the acceptable standard. That is what we have to address.
We have provided £36 million for a new National Institute for Health Research translational research collaboration on dementia, with research into better treatments, care and understanding of the condition. We have also provided £9.6 million to expand the UK Biobank.
I am conscious that I am not going to have nearly enough time to deal with all the issues that have been raised today. A great deal of emphasis has been placed on the importance of early diagnosis. The right hon. Member for Salford and Eccles talked about the completely unacceptable regional variations. All clinical commissioning groups will have to set ambitious objectives to close the gaps, and they must be held to account for that. The National Commissioning Board will build up a national picture of the challenges in each local area. Alison Seabeck talked about the encouraging progress that can be made in that regard. People want timely, good-quality information that helps them to make the right choices about their care. The hon. Member for Bridgend talked about the importance of the GP discussing with the family the approaches that they want.
In conclusion, the coalition Government are doing as much as possible, but there is much more to be done. We will make an announcement soon on funding for elderly care. The Care and Support Bill must, in my view, include paving clauses on Dilnot. We have a real opportunity now to secure the reform that is so long overdue. We should also remember that the Dilnot recommendations included raising the threshold for means-tested support to £100,000, which would help an enormous number of families who are experiencing real difficulties.
To address the challenges of dementia, we need a response not just from the NHS, not just from the Government and not just from businesses, but from society as a whole. There are promising signs. The Prime Minister’s dementia challenge is not only about geeing up the NHS and our local authorities, but about all the resources that our communities have to offer. I completely agree with my right hon. Friend the Member for Sutton and Cheam that we need to develop the strategy beyond 2015. Of course, we will need to assess and learn the lessons from the current strategy, but we must then apply it beyond that date. The same applies to research as well; I completely agree with him on that.
There is a lot of hard work being done by the NHS, by social care professionals and by others across England—work that is increasing diagnosis rates, and reducing the prescription of antipsychotic drugs for people with dementia, to name but two. As a consequence, many more people are getting the treatment and care that they need and that their loved ones deserve. Long may that continue.
I am on a learning curve as a new Minister, and I have found this debate immensely helpful. As I said earlier, I have learned a lot from it. I dedicate myself to doing everything I can, for as long as I have this job, to try to make a difference.
On behalf of my hon. Friend Tracey Crouch and Hazel Blears, I would like to thank each and every one of the Members who have contributed to the debate. Some of the speeches were personal; they were all powerful and moving, and they speak to why this debate cuts across party divides. It is not about party dispute; it is about party consensus across the House. On behalf of my colleagues, I also want to thank the Backbench Business Committee for scheduling the debate.
I want to highlight a number of areas. The first is early diagnosis. Many Members have said that it is absolutely critical and makes a big difference. However, a diagnosis that just hangs a label around a person’s neck does not make a difference. What makes a difference is understanding the person, the journey they have been on and the journey they are about to embark on when they receive that diagnosis.
That brings me to the second area, which relates to care and treatment. In order to understand a person, we need to know them. If we know them, we can ensure that they have a sustained, adaptable and joined-up package of care and support that moves with them and their needs as their condition progresses, and that must apply not only to them but to their friends and family. We have heard some harrowing accounts today of how compassion has been absent from our national health service and our care services, but we have also heard stories of hope, where things are going better. They are the beacons that we need to look to, and we need to light more of them around the country.
A third area is research, which is also about hope. We need to ensure that we invest in understanding so that we can defeat the disease and, in the meantime, treat people much better. If the debate delivers no other message to the Government today, I hope that it will deliver this one: this Government really need to lead and deliver when it comes to research and reform; they need to get on with it. It is long overdue, and it is time for the coalition to deliver it.
Question put and agreed to.
That this House has considered the matter of dementia.