Paul Burstow
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.
The Minister of State, Department of Health (Norman Lamb)
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.
Debbie Abrahams (Oldham East and Saddleworth) (Lab)
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.
In September last year, my mother died of Alzheimer’s. She was only 74. In 1992, she remarried and moved to the US, and it was there, 10 years later, that she was diagnosed with the disease.
The Parliamentary Under-Secretary of State for Health (Anna Soubry)
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?
Debbie Abrahams
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 the Member for Bridgend (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 the Member for Liverpool, Walton (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 to my concerns for my mum’s and stepdad’s welfare on 24 August. After week’s of chasing it, including through the Governor’s office, I got a reply on 19 October saying that it deemed my father, whom it had never even met, to be competent and would not be taking it any further. Unfortunately, my mum had died by then.
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 the Member for Salford and Eccles (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 a national care service, and that must include the Treasury teams. We cannot afford to kick this issue into the long grass any longer.
The Minister of State, Department of Health (Norman Lamb)
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 the Member for Sutton and Cheam (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 the hon. Member for Bridgend (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 on board 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 the hon. Member for Liverpool, Walton (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 the hon. Member for Oldham East and Saddleworth (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.
On 26 March last year, the Prime Minister gave a speech about the Government’s challenge on dementia. He said that we would do more to translate the national dementia strategy into greater action on the ground in three key areas: first, improving health and care; secondly, making communities more dementia friendly, so that people with dementia are better understood and catered for; and, thirdly, doing more research into dementia. When he launched the challenge, the Prime Minister said we would set out plans to make life better for people with dementia and their carers. Indeed, the hon. Member for Worsley and Eccles South (Barbara Keeley) spoke movingly about carers and mentioned that she had invited me. I think I am going, and I very much look forward to hearing about the good work done in Salford.
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. The hon. Member for Chatham and Aylesford (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. The hon. Member for Banbury (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. The hon. Member for Plymouth, Moor View (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.