Dementia

Lord Wills Excerpts

Thursday 28th June 2012 Lords Chamber

[Lord Wills]

My Lords, I, too, thank my noble friend Lord Touhig for securing this debate. My mother lived with dementia for many years and in the early stages suffered greatly from it. What she went through in the early 1990s was depressingly instructive about the state of dementia care at that time in the London suburb where she lived. My mother was diagnosed in 1993, but that diagnosis took place only after my sister and I ignored the advice of our mother’s GP, who said there was no point in a diagnosis as nothing could be done for our mother if her increasing memory loss and confusion turned out to be the result of dementia. When the diagnosis was confirmed and we asked the GP for help, the GP who had cared for my mother and looked after our family for 25 years, she said that she was very sorry but there was nothing that could be done medically and she could not help my mother any further.

No support was offered to us by the local NHS or the local authority. We were on our own while my mother was rapidly deteriorating, bewildered and panicked by what was happening to her. My sister and I, with six young children between us, could not care for her in our homes, so we looked for a care home for her, but we could not find anywhere that we felt would provide anything like a real home for her. So we searched for carers to look after her in her own home. We were untypically fortunate enough to be able to do that, and we went through one carer a week for six months, as we could find nobody able and willing to take on the complex task of caring for someone suffering from dementia. Finally, when we had really begun to despair, through some good luck, we found a caring woman who looked after my mother wonderfully for the last four years of her life and helped make those years, for the most part, happy and peaceful.

Finding a carer was not the end of the problems that we faced. As my mother’s general state of health declined, she spent more and more time in hospital, and at one point in 1997, she was having to be fed through a tube. The consultant then insisted that she no longer had any quality of life and that the tube should be removed and she should be allowed to die. My sister and I disagreed and the consultant then tried to bully us—and I use that verb advisedly—into following his advice, telling us that we were being selfish and that the bed was needed for a patient who would benefit from it more. The pressure he exerted on a daily basis was intense and caused us great anxiety and distress, but we still resisted and, in the end, we were able to find a hospital that took a different approach and we moved our mother there. Through its loving care, my mother recovered, the tube was removed without her dying as a result and she was eventually discharged and went home where she lived for a further nine months, mostly happy and peaceful.

I have told this personal story at some length because it illustrates the state of dementia care at that time in that outer London suburb and is typical of the experience of so many people, many of whom are unfortunately unable to care for their relatives in the way that we were able to care for our mother. It typifies the experience that so many people living with dementia and their carers went through at that time. There was no empathy with the patient, no support for relatives and carers and a pervasive inadequacy of care.

Twenty years ago, I assumed that was the way things were and had to be, but in 1997 I was elected as the MP for North Swindon and I found that in Swindon, thanks to the imaginative work of Dr Roger Bullock and his colleagues, dementia care was immeasurably better than that received by my mother. There was respect and dignity in the way care was delivered, there was an underpinning belief that those suffering from dementia could still enjoy a good quality of life, and there was dedication to providing therapies to that end, all of which had been notably absent from the care on offer to my mother.

I agree with the noble Baroness, Lady Barker, that over the past 10 years, the practice in Swindon has become more typical and the neglect and indifference experienced by my mother less so. There has been real progress and there is better understanding of the disease. The national dementia strategy launched by the previous Government in 2009 was a landmark, and I hope there are no members of the medical profession today who still believe that those suffering from dementia cannot enjoy a reasonable quality of life. I agree with the noble Baroness, Lady Barker, that the Prime Minister’s Challenge on Dementia, which was published three months ago, is most welcome. It sets out some of the progress that has been made and there is a commendable determination to go, as the Prime Minister puts it, further and faster. I am concerned, however, about the obstacles that remain in the way of such progress. It is depressing, for example, that the Alzheimer’s Society, which does such invaluable work in this area and for whose support I shall always be grateful, found in 2009 that there was an unacceptable variation in the care of people with dementia on hospital wards, as my noble friend Lord Touhig has just outlined. There are still no national eligibility criteria for access to care and there should be. As my noble friend has pointed out, the difference between the highest spending local authority at Tower Hamlets is five times that of the lowest spending one in Cornwall. This sort of variation is neither fair nor justifiable.

Moreover, as my noble friend Lord Touhig has said, the most pressing need is to sort out adequate funding for social care. As the population ages, the number of people suffering from dementia increases. There are 800,000 today and that is forecast to rise by 25 per cent in the next 10 years alone. There are at least 600,000 carers today and that number is almost certainly an underestimate. These figures are never accurate and they are almost certainly a significant underestimate. That number is bound to rise, too. Because they receive too little support, people with dementia are admitted earlier than they need to be into long-term care and into hospital when adequate support in the community might have rendered that unnecessary. This is a wasteful, inefficient and above all unfair system.

There is also the continuing refusal of the Government to extend the protections of the Human Rights Act to all those in care homes. It is perhaps those with dementia who are most in need of such protections and the application of those fundamental human rights principles of dignity and respect. We have debated this issue recently in your Lordships’ House and the Minister was adamant in his refusal even to contemplate the extension of such protections. I still hope he may think again, if not today, at some point in the not-too-distant future.

Finally, I want to address the issue of innovation, which is so important in all issues to do with health care but particularly so in this area of health and social care where our understanding of this disease is growing exponentially. We have to listen to and learn from the experience of those who are living with it and their carers. I pay tribute to the Department of Health because I think it is taking some worthwhile initiatives to foster such innovation, but significant problems remain. For innovation to flourish, two things are required: first, empowerment of the frontline; and, secondly, the ability to roll out best practice so that everywhere in the country can benefit from it.

Ten years ago I was so impressed by the quality of dementia care I found in Swindon that I wanted to help develop it into a model that could be replicated across the country quickly and easily. So in 2002 and 2003 I worked intensively with all the relevant local agencies, in the NHS and the local authority and with local carers, to develop new and better mechanisms. The innovative proposal that emerged from that process offered choices for different care packages to sufferers and carers. It offered integrated care and a unique role for the voluntary sector, all of which successive Governments and professional bodies and the All-Party Parliamentary Group on Dementia have said are important.

This proposal required no extra funding. That meant, however, that local managers would be required to be highly efficient in their management of resources and they were concerned that this new challenge might affect their ability to meet all the targets that the Department of Health then required them to meet. So they needed some assurance that, if they were to embark on this enterprising initiative, they would not be penalised by the Department of Health for missing any other targets as a result.

This was a difficult issue, especially as the then Government were so driven by targets. As this was an important initiative, however, formulated not by an MP but by outstanding frontline professionals and patients and carers, I would have expected at least a dialogue about it. I wrote several letters to two successive Health Secretaries and I never received even the courtesy of a substantive reply. It was not that the idea was rejected; Ministers refused even to discuss it. Even their Special Advisers saw no point in discussing it.

I should say that the noble Lord, Lord Adonis, an adornment to your Lordships’ House, then in the Prime Minister's Policy Unit, was enthusiastically supportive but sadly that counted for nothing in the face of an indifference from the Department of Health which stemmed, as far as I have been able to work out, from the fact that this idea did not originate in the Department of Health.

I understand that the Government’s reforms will relax the sort of control from the centre that stifled the Swindon initiative, but maximising the benefits of self-directed support of the sort that that initiative envisaged requires an adequate infrastructure of information and services to support patients and carers in their choices. Ministers say that they want personal budgets to be the norm by 2013. That could produce some of the same outcomes that the Swindon initiative envisaged and which research by the Mental Health Foundation has shown are valued by carers and users. However, these desirable outcomes can be secured only if there is adequate infrastructure in place.

At a time when so much control is being passed from the centre to local agencies, and local authority and NHS budgets are under such pressure, is the Minister confident that such infrastructure will be adequate everywhere across the country—not just in the places of excellence, such as Swindon, but everywhere? Can he be confident that there will not be the same unfair, uneven provision from area to area that has characterised dementia care in the past and about which my noble friend Lord Touhig spoke so eloquently? It is increasingly accepted that, nationally, dementia care has been unacceptably neglected for far too long and that, locally, provision has been far too uneven. I hope the Minister can demonstrate real commitment to going, in the Prime Minister’s words, “further and faster”, not simply by saying it—which I am sure he will, with his characteristic grace and eloquence—but by demonstrating that in future there will be the quality of care that all those with dementia and all those caring for them deserve, and that it will be available everywhere in the country.

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[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)]

My Lords, I begin by congratulating the noble Lord, Lord Touhig, on securing this debate and thank him for his compelling speech. As all noble Lords have emphasised, dementia is one of the most important health and social care issues that we face as a society. The statistics are staggering. The 670,000 people with dementia in England will double over the next 30 years, and the current £19 billion cost will inevitably spiral.

Dementia affects not only health and social care but all of society, and the speeches today have brought that dimension graphically to life. We need to be better prepared. Dementia is a priority for this Government, and we are working to ensure that it becomes a priority for every part of our society—communities, banks, supermarkets and transport. All need to become dementia-aware and dementia-friendly. That is why, on 26 March, the Prime Minister set out the Government’s challenge on dementia, to go further and faster in implementing the national dementia strategy in three key areas: driving improvements in health and care, creating dementia-friendly communities and improving research into dementia.

I was grateful to my noble friend Lady Barker for what she said about the challenge. We do mean business in this important area. Nationally, three champion groups are driving delivery. The first meetings of the three groups have already taken place and work is well under way to make progress on the challenge. The champion groups will report their progress in September 2012 and again in March 2013.

People with dementia, their families and carers have told us what is important to them and what will help them to live well with dementia. They want to receive an early diagnosis and timely, good-quality information that will help them to make informed choices about their care. I listened with dismay to the story the noble Lord, Lord Wills, told us about his own mother in that context. They want the treatment and support they receive to be the best for their dementia and their life, regardless of whether they are cared for at home, in hospital or in a care home. They want the care they receive at the end of their life to be compassionate and appropriate and to support their exercise of choice.

Early identification of those who care for people with dementia is crucial so that they can be directed to the information, advice and support that will help them in their caring role. The NHS operating framework requires the NHS to work more closely than ever before with local carers’ organisations and councils to agree plans, pool their resources and make sure that carers get the support and breaks they deserve.

However, there are other reasons why change is so important. The challenging economic context, as noble Lords have emphasised, makes it even more important for new and more efficient models of service delivery. That is why we have launched an innovation challenge prize of £1 million for NHS organisations to develop ideas for transforming dementia care. Through the dementia care and support compact, the social care sector is committing to leading initiatives to improve the quality of care for people with dementia. That includes work to ensure that people with dementia are clear about what they have a right to expect of care services.

The noble Lord, Lord Wills, asked about the funding for all this. The Government have already made increased funding available to the NHS and many of the aims of the challenge should deliver savings. For example, the CQUIN goal of improving the recognition of dementia in hospital should lead to people with dementia spending less time in hospital, and ensuring that people with dementia are diagnosed early should stop them going into crisis. The Prime Minister’s challenge is about the NHS and social care making better use of the resources already available to them.

The noble Lord, Lord Touhig, asked about the eligibility criteria for care. The imminent White Paper on care and support—I stress that it is imminent—will set out our plans to transform the care and support system for everyone, including people with dementia. The noble Baronesses, Lady Pitkeathley and Lady Wheeler, asked me for further and better particulars on our plans for publishing the White Paper and indeed for reforming the funding of social care. The care and support White Paper and the progress report on funding reform for social care will be published simultaneously and, I hope, very shortly. I believe that I can go no further than I did the other day in responding to the noble Baroness, Lady Wheeler, but I can reaffirm the Government’s intention to legislate on both funding reform and the reform of the law on social care as early as possible in this Parliament. Clearly, following the publication of the White Paper and the draft Bill that will go with it, we will wish to hear from all sides of the House and indeed from all sectors of the community about the direction of travel and the detail of our ideas.

The noble Baroness, Lady Pitkeathley, asked about the role of GPs. As part of the Prime Minister’s challenge, we are actively working with the royal colleges to identify how best to improve early diagnosis through awareness, education and training at GP level. Early and accurate diagnosis is, as the noble Baroness and others emphasised, very important in ensuring that people with dementia can access the support and information that everyone needs when they receive the dismaying news of this dreadful condition.

My noble friend Lady Barker spoke about adaptations for those with multiple disabilities. I agree with what she said. It is important that designers think about people with dementia when designing products for older people. The department provided funding to the Design Council to run a project to encourage design for people with dementia. There were 185 entries, which shows that designers take this seriously and that the design community is very definitely rising to the challenge.

The noble Lord, Lord Wills, spoke about the Swindon project and innovation. I can tell him that we very much want to see good, innovative practice spread out across the NHS and social care. That is why we have launched the innovation challenge prize for dementia, to which I referred. We are very much looking at innovation as part of the implementation of the Prime Minister’s challenge. Incidentally, the dementia challenge is to achieve a dramatic reduction in the proportion of people who have undiagnosed dementia, with evidence of a step-change in the diagnosis rate and a strong service response. The challenges in this and other areas will be open for a minimum of three years, which should encourage health communities and organisations to confirm their intention to apply for a prize.

The noble Lord, Lord Wills, also referred to human rights. We very much welcomed the publication of the report of the EHRC inquiry into human rights in home care for older people. The report found evidence of mixed practice. While we should be positive about those who deliver good-quality care services—and there are many—there is no excuse for bad practice. We believe that the report performed a valuable service by shining a light on the care and support provided in that most private of spaces—people’s own homes. We cannot tolerate poor quality in any of our care services. I completely agreed with what the noble Baroness, Lady Greengross, said about training. Care and support that respects human rights must be the foundation on which we build to make a reality of our vision of better health and well-being and better care for all. We will continue to work with the EHRC, the Care Quality Commission, local authorities and care providers to ensure that poor practice is rooted out.

The noble Baroness referred, quite rightly, to workforce issues and training. We know that two-thirds of people in care homes have dementia, so it is vital that the workforce is trained in dementia care. Indeed, 10 leading care home and home care providers have already signed the dementia care and support compact to which I referred, and we aim to have 50 organisations signed up by September this year. The compact sets out the organisation’s commitment to deliver high-quality, relationship-based care and support for people with dementia. I think that that statement of intent gets the process off to the right start.

The noble Baroness, Lady Pitkeathley, rightly reminded us of the vital contribution that carers make to society, a theme taken up, very perceptively, if I may say so, by the noble Baroness, Lady Wheeler. The Government have taken strong action to support carers. We set out our priorities in Recognised, Valued and Supported: Next Steps for the Carers Strategy, published in November 2010, and we are providing additional funding of £400 million to the NHS between 2011 and 2015 for carers’ breaks. As we set out in Innovation Health and Wealth, published last December, from April 2013 access to all CQUIN rewards will be dependent on commissioning support for carers in line with NICE and SCIE guidelines.

Furthermore, the 2012-13 NHS operating framework requires the NHS to work more closely than ever before with local carers’ organisations and councils to agree plans, pool their resources and make sure that carers get the support and break that they deserve. I very much hope and believe that that will have a positive effect on the thousands of carers of people with dementia in England.

Although dementia can be a crushing condition, we must not lose sight of the fact that people do live well with it. We need a profound shift in culture and behaviour if we are to reduce the stigma of dementia. All too often dementia is ignored, and the work of carers and other professionals goes unrecognised. Business and civic organisations are part of the solution. They can help to create dementia-friendly communities where people with dementia and their carers can remain and do the things that we all take for granted, such as travelling around and shopping. As so often, my noble friend Lady Barker was completely right in what she said on this theme. We need to create communities in which people are not ashamed of or embarrassed by dementia.

As we have a few minutes in hand, with the leave of the House I will continue a little longer. We need to create communities that show a high level of public awareness and understanding about dementia, communities where people with dementia and their carers are encouraged to seek help and where people know enough about dementia to be able to help someone with the condition. By 2015, there will be at least 20 places recognised as working towards being a dementia-friendly community. Places and organisations that meet the criteria being developed as part of the Prime Minister’s challenge will be awarded dementia-friendly status. I can say to my noble friend Lady Barker that, as part of the dementia-friendly communities strand of the challenge, we are working with banks to ensure that they and their staff understand the needs of people with dementia and that staff are dementia-aware.

The noble Baroness, Lady Greengross, mentioned an important part of the Prime Minister’s challenge, dementia research, spanning basic research through to living well with dementia and increasing capacity and capability across the entire research system. It commits the National Institute for Health Research, the Medical Research Council and the Economic and Social Research Council to increasing funding for research into dementia from £26.6 million in 2009-10 to an estimated £66.3 million in 2014-15.

Over the next three years, the NIHR will support the four new NIHR biomedical research units for dementia, projects resulting from the recent NIHR-themed call for research on dementia, and additional work depending on the volume of high-quality applications received. In addition to the increase in funding for dementia, the MRC will spend over £3 million to support the UK brain banks network. This connects all the UK brain banks for the benefit of donors, researchers and future patients. This money includes £500,000 a year to improve the process for donating brain tissue by meeting the costs of collection through the NHS. The ESRC is making £5 million of additional funding available to fund research into the prevention of dementia and interventions to maximise the quality of life for people with the condition.

There is much that the Government are doing and much more yet to be done. To address the challenges of dementia, we need a response not only from the NHS but from society as a whole.

[Lord Wills]

My Lords, as there is a little time—this is not my intervention—I want to place on record how enormously heartening I found the Minister’s response to the debate. I feel inspired by much of what he said and I want to put on record my thanks to him for his response.

My question is this: are there any milestones in place to measure progress in meeting the Prime Minister’s challenge and, if so, what are they?

[Earl Howe]

My Lords, if the noble Lord will allow me, I shall write to him on that. The answer, broadly, is yes, we want to see progress made by certain steps of time. However, time does not permit me to spell that out now.

There are already significant signs of progress up and down the country. The Prime Minister’s challenge is about mobilising not only the NHS and local authorities but all the resources that our communities have to offer. A great deal of good work is already going on and is beginning to lead to a steady increase in diagnosis rates, which is promising. The result of that will, of course, be that many more people will get the treatment and care that they need and that their loved ones deserve. Long may this continue.