Dementia

Paul Burstow Excerpts

Thursday 10th January 2013 Commons Chamber

[Paul Burstow (Sutton and Cheam) (LD)]

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 the Member for Chatham and Aylesford (Tracey Crouch) for her commitment to, and interest in, these issues and her determination to ensure this debate took place today, and the right hon. Member for Salford and Eccles (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.

[John Pugh (Southport) (LD)]

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?

[Paul Burstow]

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.

[Huw Irranca-Davies (Ogmore) (Lab)]

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.

[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.

--- Later in debate ---

[Paul Burstow]

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.

[Several hon. Members]

rose—

--- Later in debate ---

[Paul Burstow]

On behalf of my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch) and the right hon. Member for Salford and Eccles (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.

Resolved,

That this House has considered the matter of dementia.