Health: Neurological Conditions
Baroness Pitkeathley Excerpts(13 years ago)
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Baroness Pitkeathley
My Lords, as I follow the noble Baroness, Lady Gardner, perhaps I may say that I have met her daughter, very much admired her indomitable spirit and am not surprised that she won her campaign with the buses. I thank my noble friend Lord Dubs for giving the House the opportunity to debate this important issue. Your Lordships will not be surprised to know that I want to concentrate mostly on the problems raised by families and friends who care for people with neurological conditions, and principally those who are looking after someone with conditions such as dementia and Alzheimer's.
First, let me say a word about the particular problems for carers of those with neurological conditions. Many of them are fluctuating conditions. MS is a case in point, as my noble friend and the noble Baroness have reminded us, so that the need for support is not constant. It is not easy, therefore, to have a once-for-all assessment which provides you with ongoing support. Sometimes, your needs are much greater than at other times, and that is often very difficult to feed into the assessment process. Carers nearly always have a problem identifying themselves as carers anyway—particularly as people with needs for help which are separate from but intricately linked to those of the person suffering from the condition.
People say: “I am not a carer. I am a wife, a husband, a daughter, a son”. Time and again, we come across the fact that once you have identified yourself as a carer, you can access services and people who can help you, but unless you make that connection, you cannot get yourself into the system. I will never forget a carer who some years ago gave me a wonderful analogy of that. She said, “I feel as though somewhere there is a great mushroom of information and help. If I could find my way to the stem, I would find my way up and into the mushroom, but I do not even know where the stem begins”. That is an interesting picture that we might keep in our minds. Those problems are especially acute for people with fluctuating neurological conditions.
I turn to a condition which, sadly, rarely fluctuates but is progressive and terminal and is the cause of huge stress for carers—perhaps, because of the very nature of the condition, it is sometimes more distressing for the carer than for the sufferer. I refer of course to dementia. Currently, 600,000 carers are looking after somebody with dementia and the number of sufferers, as your Lordships will know, is estimated to rise to at least 1 million by 2025. One in three people over 65 has some form of dementia, and a quarter of hospital beds are occupied by sufferers, so it is a huge problem of our time. It is associated with increased longevity—a cause for celebration, as we often say—but undoubtedly also a cause of stress for caring families.
The stress manifests itself in three different areas, all of which need support. First, there is the financial situation. Although many carers for people with dementia are themselves elderly spouses, there are still many who have given up paid work to undertake the task, resulting in substantial loss not only to their current but their future potential income in the form of much reduced pensions. The costs associated with caring, such as the need for increased heating—a particular problem at present with the rising cost of fuel—special foods, special transport, and so on are all a cause for concern. I make special mention of an often ignored problem: that of dealing with incontinence. Not only is it incredibly distressing to deal with, it also costs more. We are constantly hearing reports of how the rise in VAT has hit families who care, because they are having to spend more on a range of VAT-rated products such as cleaning materials, detergents, bandages and, in particular, continence pads and bedclothes. Families frequently raise the magnified impact of high energy costs, as they have to have the washing machine on every day to wash bedsheets and clothes as a result of incontinence.
The income of those families—those carers and sufferers—must be protected. I know that noble Lords who have been speaking on the Welfare Reform Bill—I am glad to say that some of them are speaking here today—have been really banging that drum. The House owes them a great debt of gratitude for all the work they have done thus far on the Welfare Reform Bill, which comes to us on Report next week. I know that the disability population owes them a great debt of gratitude.
Carers’ physical health is often also affected by caring. Sixty per cent of carers report a back injury of some kind. Although the noble Lord talked about the technology—hoists, and so on—time and again you hear families say, “They did not supply the hoist”; “It was the wrong kind when it came”; “I could not work it because they had not taken notice of the fact that my wrists are weak”; and so on. They are often affected by lack of sleep, as dementia sufferers often turn night into day and have to be watched constantly. Respite provision is increasingly hard to come by, carers report, as local authorities cut their budgets and as the voluntary sector, which often provides the best form of respite, is struggling to maintain services. Commissioners, who are always frightened about what carers will ask for if they ask them what are their respite care needs, should be reassured, because every piece of research shows that carers habitually ask for less than anyone thinks that they will want. You offer them a fortnight off and they say, “No, I do not want a fortnight off. What I want is one night's sleep once a fortnight or once a month”. That is not too much to ask considering that that is how we will keep the carers going for, often, many years.
Perhaps the most difficult problem that carers in this situation face is the emotional consequences of dealing with a loved one whose personality has changed, who may no longer recognise them and who may be aggressive—even violent—where once they were placid. Often, the potential providers of support focus entirely on the patient; they do not even notice the stress on the carer. Many a time, you will meet a carer who says, “The time the GP turned to me and said ‘How are you?’ was the most amazing moment, because I realised that someone else had noticed”. That is where carers’ support groups can be of tremendous help. They can meet other people in a similar situation and admit feelings that are hard to admit, such as the fact that you are violently angry with the person you are caring for.
I reiterate what has been the theme of your Lordships’ scrutiny of the Health and Social Care Bill. It is no use simply making changes to the NHS unless you include social care provision. It is not enough to increase inspection regimes or to talk endlessly about extra regulation. We have to change the culture surrounding the provision of social care. We had to change it at the Department of Health. I commend the work of David Behan, Paul Burstow and the Minister here on that. It is to be hoped that the forthcoming White Paper on social care emphasises that it is as important as healthcare. We have to change the culture in service provision, so that we regard services for people with dementia as ranking in importance with what we give to lifesaving surgery and medicine. It is not as glamorous, heaven knows, but those in the situation I have outlined regard it as of just as great importance.
We also have to change the culture of those who work in the service. I acknowledge the skills and dedication of many employees in this most difficult of areas, but too many employees’ values are not what we could wish. I was talking to a care provider recently who told me that they were turning the interview procedures for those who wanted to become care assistants on their head, so that they start by testing their values, not their skills and experience. We could do more to ensure that others do the same and reject those who do not meet the values test. Of course, as long as care workers are so poorly paid, it is difficult to increase the status of this work, but it should surely not be beyond the wit of those who work in the field to promote the fact that caring for those most vulnerable people carries with it more satisfaction than stacking shelves in the supermarket.
Caring for those with dementia is not a problem which will easily be solved, but as it is not going to go away, we must all take more responsibility for ensuring that we do it as well as possible. With one in three of the older population having some form of it, it will happen to every one of us or to someone we love in the foreseeable future.
Finally, without reiterating the long debate we had yesterday about the future of social care, and with apologies to the Minister for banging on endlessly about this subject, I feel that the long-term solution to the problems that we are looking at today is a partnership approach to the funding provision of care as set out in the Dilnot report. It seems to me that we owe that to the families who continue to care, who do it willingly and with love but rarely with enough support.
Health and Social Care Bill
Baroness Pitkeathley Excerpts(13 years ago)
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As I said in our recent debate on the Dilnot commission report, secured by my noble friend Lady Pitkeathley, we need to consider whether this Bill is a suitable vehicle for progressing implementation of that report. Here I should declare my interest as a member of the Dilnot commission. First, I shall make some remarks on the growing crisis, if I may put it that way, in social care and the implications of that crisis for the NHS and patients, particularly as, despite the extra money the Government have provided for social care in the spending review—I commend the Government on that—we still face a £1.2 billion shortfall by 2014, according to the King’s Fund.
The NHS and social care are in a symbiotic relationship with each other, in that what happens in one sector can have a profound effect on the other. That is what is happening now. The current problems have their roots in the past. Both sectors face the challenge of a service response to an ageing population. The fact that we live longer is, of course, something to celebrate, but it does have consequences for health and social care. By 2030 there are expected to be £2.5 million more people aged 75 or over. The current 1.5 million over 85 will double in the same period. The number living with dementia in the UK is expected to reach 1.4 million by 2040. We have nearly 18 million people living with long-term conditions that require treatment and care, but not necessarily in hospital. Getting the balance right in the resourcing, co-operation and delivery of services between the NHS and social care is critical to the quality of care and quality of life for this ageing population and for the cost to the taxpayer of those two services.
What is clear is that doing nothing and letting the current system carry on is not really an option. For example, the King’s Fund has shown that even if we do nothing to the current inadequate adult social care system, its cost will rise from £6.7 billion in 2011 to £12.1 billion in 2026. In that situation, the eligibility criteria for social care will get tighter and tighter, despite the extra expenditure, and the pressures on the NHS will increase as social care is unable to cope. Both systems need rebalancing and improved integration between the two.
However, they do not start from the same position. Since 2003-04, spending on social care has increased by 19 per cent in real terms, which is half the rate of increase in NHS spending in England over the same period. Despite this increase in spending on social care, access to state-funded services has reduced. In 2005-06, 60 per cent of local authorities restricted their service eligibility threshold to those whose needs were substantial or critical, leaving those with low or moderate needs to fend for themselves. By 2010-11, that 60 per cent had risen to 82 per cent of local authorities. As local authorities try to balance their budgets, they have cut the price they pay to providers, with a consequential impact on the quality unless they can persuade a growing number of self-funders to subsidise the care of those who are funded by the state. The impact has meant increasing burdens on informal carers, whose health is often not of the best, and rising costs in the NHS. Perversely, we can now end up with the taxpayer spending £3,000 a week to care for an 85 year-old in the medical ward of an acute hospital when they would be better off in a medically supervised £1,000-a-week single room in a nursing home.
At the heart of this problem is that social care simply does not have the standing of the NHS. If we are to improve social care and its integration with the NHS for the benefit of service users, we have to improve that public and political standing and realign the financial balance between the NHS and social care. I suggest that a good starting point for that would be the statutory duty placed on the Secretary of State. Leaving aside our current dispute over the precise wording of Clause 1, the Bill as it stands gives the Secretary of State the clear duty, which he has had for a long time, to promote a comprehensive health service designed to improve the physical and mental health of people and the prevention, diagnosis and treatment of illness. There is nothing equivalent to that duty in relation to the NHS for adult social care.
In subsection (1) of my new clause in Amendment 260DA, I have tried to even things up a bit by placing a clear duty on the Secretary of State to secure continuous improvement in the quality of social care services. This would mean that, when considering his priorities in relation to health and social care, the Secretary of State would have to consider securing a proper balance between both sectors. I suggest that both will face similar demographic challenges and careful consideration would then have to be given to how to allocate resources and priorities between the NHS and adult social care.
The rest of Amendment 260DA is intended, if I may put it this way, as a helpful encouragement to the Government to use the Bill to secure the legislative framework to implement the ideas in the Dilnot commission’s report but without the Government, at this stage, committing themselves to the precise financial figures in our report or the timing of implementation. The Government would be able to consider the responses to the consultative process that closed last Friday and prepare their White Paper in the spring as they are proposing to do. The amendment would remove the need to worry about whether they would have a piece of legislation on this subject in the next Session. I have to say that a number of us, both inside the House and outside, have a fair degree of scepticism about whether that Bill will actually happen.
There is widespread support for the direction of travel pointed to by the Dilnot report, with widespread consensus among stakeholders that this is the road we should tread if the finances of adult social care are to be placed on a more secure footing over time. It is no purpose of mine today to go into the detailed merits of the Dilnot commission’s report. However, I would like to hear, especially from the Liberal Democrats who have been supportive in this area, whether they support moving forward swiftly as many of us do. What I should make clear is that I regard subsection (1) of Amendment 260DA as standing on its own merits irrespective of the Government’s attitude to using this Bill to create a legislative framework for implementing Dilnot. I cannot say that my optimism on that aspect is all that great. However, I hope we can secure support across the House for inserting something in the Bill along the lines of subsection (1) so that when the Bill leaves this House there is a bit more equilibrium between the duty placed on the Secretary of State in relation to the NHS and that placed on him in relation to adult social care. I am not wedded to the precise wording of my amendment but I hope we can actually secure some cross-party consensus on the need to put something that follows the spirit and thrust of that subsection into the Bill before it leaves your Lordships’ House.
Amendment 244 simply requires the Secretary of State, when he publishes his annual report on the NHS, also to report on the health service’s integrated working with adult social care. This is such an important part of how the NHS will work in the future, particularly with the financial challenges that are faced, that I believe we should make specific reference to it in the Bill. I hope the Government agree. I beg to move.
Baroness Pitkeathley
My Lords, my name is attached to Amendments 244 and 260DA. I want to emphasise how vital integrated working is from the point of view of the patient. Most patients, especially older ones or those with a long-term condition, do not experience either health or social care but some kind of combination of both—combinations that fluctuate according to variations in their condition.
This, as we have been reminded, is a Health and Social Care Bill yet the Committee debates thus far have not reflected the experience of patients and their families but have been very focused on acute care and the role of hospitals. I am delighted that consideration of these amendments gives the Committee the opportunity to focus more acutely—no pun intended—on the social care aspect of the proposed legislation. I strongly support the call for social care provision to be subject to annual review. I remind the Committee of the multifaceted nature of social care—residential care, home care, respite care and increasingly tele-care—and of the range of providers such as private, voluntary and social enterprises. Many of these services are facing huge challenges because of increased demand and reduced resources so it is clearly vital that a review is carried out regularly and I can see no reason why the Government should not agree to this amendment.
Health and Social Care Bill
Baroness Pitkeathley Excerpts(13 years ago)
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Lord Patel
My Lords, I have my name to this amendment and I support it. I agree with all the comments that the noble Baroness, Lady Emerton, has made. I have only two brief comments. One is based on the evidence and the strength of that evidence. The noble Baroness, Lady Murphy, mentioned California, which passed a law based on the evidence. So what is the strength of this evidence? I have looked at the literature, particularly at meta-analysis of all the literature that is produced relating to staffing levels and patient outcomes, including mortality. Meta-analysis involves looking at all the published literature and its methodology, and only those publications with a methodology that is felt to be good are included in the meta-analysis. The meta-analysis clearly shows that if you look at mortality, infection rates, response to arrest and serious episodes, the staffing ratios of registered, trained nurses to patients—I agree with the noble Lord, Lord Alderdice, that training is important—are important in delivering good outcomes.
The second issue is related to whose responsibility it might be to produce the guidance. If it is not the national Commissioning Board, then it ought to be the commissioners of services—the commissioning groups—that should be asked to consider the staffing ratios of each and every department in the provider’s unit before making contracts with them.
Baroness Pitkeathley
My Lords, we shall have extensive debates about regulation at a later stage of the Bill, but it is important to remind the Committee that the ability to regulate healthcare assistants and quality assure them already exists for employers without the need for further statutory regulation. Perhaps in my role as chair of the Council for Healthcare Regulatory Excellence it might be convenient for the Committee and perhaps save the Minister a little time if I respond to the points made by the noble Lords, Lord Alderdice and Lord Walton of Detchant.
The Council for Healthcare Regulatory Excellence, in its new guise as the Professional Standards Authority, will be given the role of quality-assuring voluntary registers. Talks with psychotherapists are already under way and are going very well. The General Social Care Council is going to become part of the HPC, which will in turn change its name and be overseen by what will then become the Professional Standards Authority. That is just for the clarification of the Committee.
Baroness Howe of Idlicote
My Lords, I have listened to what has been said by all these expert professionals and I am very much persuaded in favour of something along the lines of this amendment. I think that one of the most worrying things from the public viewpoint has been the sheer number of concerns about nursing that we have had in the press—not least, I may say, about the mortality rates et cetera going up during weekend staffing. Quite clearly there is a need for better reorganisation.
I go back quite a long way, to the time when I sat on the Briggs committee on the future of the nursing profession, and will never forget one of the nurses saying to me at the time: “I’ve been nursing for”—however long it was; she had just got her qualification—“and now I’m going to have a rest”, which was roughly what she was up to. I had a great deal of sympathy with her from that viewpoint.
I hope the Minister will bear in mind—I am sure that he must be more than aware of it—that the number of cuts in nursing staff are considerable in the present plan. Something like 8.3 per cent of qualified nursing jobs are to be lost. As the Royal College of Nursing pointed out in its briefing, that is on top of something that was done no less than about 18 months ago and is more than 10 times the original figure. Axing up to a quarter or a third of nursing posts will undoubtedly have a deep and potentially dangerous impact on patient care. Of course the training of the nurses—the experts in the really expert places—is essential. The training and up-skilling of those nurses on the real needs of patients is vitally important, but so are the numbers.
Lord Walton of Detchant
My Lords, it will not surprise your Lordships to learn that this is an issue in which I take an increasing personal interest. Having said that, I should add that there are islands of great excellence in relation to studies of the care of the elderly in the UK. Professor Linda Partridge is doing wonderful work in University College Hospital, and I have an avuncular interest in the important Institute for Ageing and Health, chaired by Professor Tom Kirkwood, in Newcastle. These are islands in which the care of the elderly and the research into ageing processes is being carried forward. The problem is far wider. The problem is with standards of care in the community, in care homes and in our hospitals, where it is perfectly clear that standards have become very uneven. We have heard all too many stories in the press about inadequate care. For this reason, I believe that it is absolutely right to follow up the proposal made by the noble Baroness, Lady Bakewell. I think that England needs a commissioner. There is even a possible case to be made out for establishing a clinical network relating to the care of the elderly. Basically, most clinical networks have been disease-orientated, related to specific diseases, but this problem is now one of such increasing importance in the country at large that the Government ought to support establishing a commissioner and a clinical network for the care of the elderly.
Baroness Pitkeathley
My Lords, in rising to speak in strong support of the amendments moved by my noble friend, I want to remind the Committee of the large number of older people who are not in receipt of health and social care services but are actually providing them. Of course, I refer to the increasing numbers of very elderly carers. Although the peak age for caring is still 45 to about 60, we are increasingly looking at elderly spouses looking after their elderly spouse, or much older parents looking after a child with special needs who is living very much longer than anyone would have expected hitherto. So the services that we think about—housing, transport, care services—must be tailored to the needs of these older carers too.
Of course we also have economic reasons for doing so, because many people have become poor in their old age by virtue of the fact that they provided care, and they are often in poor health as a direct result of their caring responsibilities. I remind your Lordships that these are the people who are most affected at the moment by cuts in local authority services and the voluntary sector. I hope that the Minister will be able to give an assurance that the needs of older carers will also be included in government priorities.
Lord Owen
My Lords, I had not expected to speak but I thought that the case put forward by the noble Baroness, Lady Bakewell, was extremely convincing, particularly this issue that age is not an illness but a reality, and above all a numerical reality.
Listening to the arguments, I would put just one other thought. Commissioners can sometimes be listened to and effective in government. This largely depends on the structure of government, and in particular probably either the personality of the Prime Minister or the person who is leading on health. We used to have Health and Social Security under one Secretary of State, which the noble Lord will remember very well, since he was Barbara Castle’s private secretary. He may remember too that a decision was taken in 1974 to make a Minister for the Disabled. It was scoffed at by many people within government, but there is very little doubt, looking back at the record of having successive junior Ministers responsible for disablement, that there has been a formidable achievement both in legislative activity and in activity across the board. The former Prime Minister, John Major, was at one time a junior Minister for disablement, and in fact in many ways he won his political spurs in that position.
It is a constant reminder to the Cabinet sub-committees that deal with issues like this that there is a voice there that speaks up and represents it and that is close to the source of power and decision-making. A commissioner often does not have either that access or that power. There is very little doubt that we hear and see all these problems of the aged, or that these problems are increasing. Incidentally, I think that the amendment is well worth while on its merits in relation to a National Health Service commission, but that is, as everybody has admitted, only one, relatively small issue.
There is a much deeper political issue which the present politicians are not able to grapple with. If we look at the response to the old people’s heating allowance, there is a growing feeling among a substantial number of people who do not need this money that, if we are going to be serious about grappling with the problem of the aged, we have to be serious about the whole question of the now very considerable cumulative sum that is pushed to elderly people purely and simply because of their age. I enjoy my free travel pass greatly and am wholly in favour of it, but I do not need it. In fact, I ought to be walking more frequently rather than taking the Underground or the bus. I think that we need to have a fresh look at this. The initiative on these issues will probably come from the body politic. It would be much easier to persuade people that the time has come to be more selective on some of these issues if it were ensured that the money saved was earmarked, for a while, specifically for projects for the elderly.
I would not want to endorse the proposition of a commissioner at this stage. I would be more attracted to the idea of a junior Minister for the elderly who is in government and can attend the housing, welfare, health, social care and all the other Cabinet sub-committees where the really crucial decisions are taken in terms of legislation and, often, finance.
Health and Social Care Bill
Baroness Pitkeathley Excerpts(13 years ago)
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Baroness Pitkeathley
My Lords, I agree with my noble friend Lord Harris that this is an extremely important group of amendments. I rise very briefly to support those emphasising the significance of patient involvement and, in particular, Amendment 191 in the names of the noble Lords, Lord Patel and Lord Warner, which changes “promote” to “pay regard to”.
There is no doubt that we have made progress in recent years in addressing patient interest and hearing the voice of patients and carers, and we should acknowledge that. We still have a long way to go, however. When you work with groups of patients and carers, or with individuals, you always get the same reaction. They say something like, “I feel consulted out. I have been to every meeting, I’ve talked to every clinician, I’ve given my opinion endlessly, I sometimes think they add the words ‘patient’ and ‘carer’ to every paragraph of every document that comes out of any commissioner, but what I do not know is what happens as a result of my involvement”. This is what we must bear in mind. Changing the wording in that amendment would strengthen the ability of the patient, the user and the carer to ensure that something happens as a result of their involvement. That is what we must concentrate on. We should never forget that the involvement of patients is not a tick-box exercise; it is there to ensure we shape services around the needs of patients, not the convenience of commissioners.
Baroness Murphy
My Lords, I rise to add a number of comments to one or two of these amendments. I have my name on Amendment 196, also in the name of the noble Lord, Lord Patel, which is about making choices real for patients. My experience is exactly the same as his—that patients have actually benefited very little from the wide range of choices they could have if they understood the information about accessibility, about the sort of provider, about the range of other services that that provider might have and about the performance of that provider. If you are skilled you can use information available on the internet now to find details on the various providers you have been offered under the “Choose and Book” system used by general practitioners. However, the vast majority of patients simply do not have the skill to negotiate the choices. Making that choice a reality is therefore vital.
I also support the amendments proposing that patients, wherever possible, should carry their own records. To cheer up my noble friend Lord Patel, I say that he will be reassured to know that most maternity units now do have the patient carrying their own records, and that has proved to be of great benefit because they hang on to them when the NHS loses them. It has worked very well in maternity services and I certainly support it. There should be more of that in mental health services, where there has been too much holding on to information—not always accurate information—in patients’ records. It would be much better if the patient held on to those data and was able to carry a great deal of the data with them. Of course, it would be much better if people had access to information on simple records but they do not because we do not have electronic patient records in every place. The more information the patient can carry with them, the better it is for those who are going to encounter them in the future; it is also better for the patient to have accurate data about their condition.
I come now to the question of whom the clinical commissioning groups should consult in the way of secondary providers when commissioning care. I do not support the amendment of the noble Baroness, Lady Finlay, which suggests that the specialist on the clinical commissioning group should be local rather than a person from another area. No doubt when you have too much conflict of interest, specialists on a clinical commissioning board, and a PCT which engages with the local providers and takes account of their desires, local institutions become favoured. We have seen that many times. It is simply the institution the provider belongs to. That is when you are making a decision, so it is very important that the decisions should be made by somebody who can input and hold in their heads all the necessary secondary specialist information. The decision should nevertheless not be made by a local person with an interest in secondary care.
However, when it comes to gathering local information, local institutions and specialists in those institutions should be consulted about what is possible in the area, what has been done before and what could be thought about in the future. That is where primary care trusts in some parts of the country so often, unfortunately, have not appreciated what they could benefit from locally in terms of academic health partnerships and how they could use their academic health science groups to assist them with the commissioning function. They need to take account of what is available locally, and need to understand and get help and consult with local academic institutions and providers, but when the decision is made it should be made by individuals who do not have a conflict of interest locally.
Funding of Care and Support
Baroness Pitkeathley Excerpts(13 years ago)
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Baroness Pitkeathley
That this House takes note of the report of the Commission on Funding of Care and Support and the future of social care.
Baroness Pitkeathley
My Lords, it is a pleasure and an honour to introduce this debate about the future of social care and to move the Motion that the House takes note of the Dilnot commission report. I am grateful to all noble Lords who have put their names down to speak and I hope they will not mind me calling them, in the context of discussing social care, “the usual suspects”. I mean that as a term of the greatest respect. However, it is a disappointment that there is no speaker from the Conservative Benches apart from the Minister.
Certain reports are so significant in the development of policy that they are known by a single name. Your Lordships will think of Beveridge or Wolfenden. In the field of social care, the names that spring to mind are perhaps Seebohm, Griffiths and Laming, and certainly many of us believe that Dilnot should join that illustrious number. I pay tribute to the Government for setting up the Commission on Funding of Care and Support and the future of social care, and to Andrew Dilnot for his extraordinarily important report. I include thanks, too, to his colleagues Dame Jo Williams and your Lordships’ very own Lord Warner—my noble friend—not only for their contribution to the report but for their continued work to have it accepted and implemented. Their diligence and sheer hard work are enormously appreciated.
The commission was set up to investigate the problems of the current system of adult social care in England and to develop ideas for reform. So what were the problems that the three musketeers, as some have called them, were to investigate? The current system of care and support is seen to be in crisis, severely stretched or broken, depending on where you sit. All agree that “something must be done”.
Of course, it is not the first time that such feelings have been expressed. Let us remember that social care has never been free at the point of delivery as healthcare has been, and the question of who pays—the individual, the family or the state—has occupied politicians for years. Twelve years ago, my own Government set up a royal commission on the subject and recommended that all care should be free. I am delighted that the noble Lord who chaired that commission is to speak in this debate—his second outing of the day—as is one of his dissenting members, and I look forward very much to hearing their views.
The problems in summary are as follows. The system is not fit for purpose. It was set up originally for a country in which men died at the age of 66, shortly after retirement, and women died before they were 70. The new statistics—for example, that 11 million people alive today will live to be 100—are of course a cause for celebration, as is the fact that so many more people are living longer, albeit with greater degrees of disability. This means that we are spending inadequate amounts on care and support, both publicly and privately.
Social care funding has failed to keep pace with demographic change. Since 2004, while spending on the NHS has risen by £25 billion, spending on social care has risen by just £43 million. To cope with rising demand and static resources, councils have increased charges for care services and rapidly raised eligibility criteria, with the percentage of councils providing support to those with moderate needs decreasing from 50 per cent in 2005 to 18 per cent in 2011, as eligibility criteria were raised to cover only those with substantial or critical needs. This has been compounded by recent local government spending reductions, with social services directors reporting £1 billion cuts to services this year and warning that the same level of cuts or even greater ones will have to be made next year. Our public provision is largely seen as providing poor services for poor people, and there have been several examples of this in recent months, most notably yesterday’s distressing report from the EHRC.
However, we should never forget that much good care is still provided to individuals within the system because of the dedication and skill of thousands of workers. Those workers and their agencies have had some success in recent years with the personalisation of services, promoting independence and early intervention. There are pockets of great service to be admired, and we should always remember that, but in general the care and support system is perceived to be starved of cash, failing to meet the volume of need, unfair and a lottery, especially for people with middle incomes, for the simple reason that if you die neatly without needing to use care services, you pay nothing, but if you become disabled through a long-term illness such as Alzheimer’s, you may need expensive services at full cost for many years, involving thousands, sometimes hundreds of thousands, of pounds. So people who own a home and have modest savings are hit very hard. The system is also extremely confusing. It is difficult to find your way around, different in different parts of the country, not portable when your location changes, and so on.
Moreover, caring families as well as the individual needing care suffer at the hands of the system, which for them is too complex, costly and unfair. Family members end up sacrificing their careers, finance and their own health in order to provide care to disabled or older loved ones, getting little or no help from a social care system and finding that services are of poor quality and expensive. However, if you have a carer you are luckier than the frail older person living alone whose total social care is a 15-minute visit once a day—twice if they are very lucky—which is not enough to keep them clean and comfortable, let alone cared for. These problems are only going to get worse if nothing is done. Within 20 years the number of over-85s will double and the number of people living with lifetime disabilities will grow too. Relatively fewer people will be working and paying taxes to help pay for support.
Apart from the practicalities of money and how it is all to be paid for, we have other changes in society that affect what we expect from social care. People want and demand greater choice and control than is often offered by our current system, and people’s expectations about standards of care are rising. The Dilnot proposals were published on 4 July and they aim to change the way that social care funding is raised and spent, extending entitlement to public funding for social care in a way that is acceptable and sustainable to taxpayers.
The key recommendations will be familiar to your Lordships. The contribution of an individual to their social care in their lifetime, which is currently unlimited, should be capped. After the cap is reached, individuals should be eligible for full state support. It is suggested that the cap should be between £25,000 and £50,000. The means-test threshold over which people are entitled to full costs should be raised from £23,000 to £100,000. Further, there should be national eligibility criteria, and portable assessments should be introduced. All those who enter adulthood with a care and support need should be immediately eligible for full state support without a means test. A new information and advice service should be set up to guide families through what they need to know.
The cost is estimated to be about £2 billion, although that figure is disputed. Of course, it is a large sum but not if you compare it with the £170 billion that social security costs or indeed the £119 billion which carers contribute to the coffers every year. In these difficult financial times there is of course a question of how money is to be found, but perhaps a better question is what will happen if that money is not found. We shall certainly see more reports of the kind which the noble Baroness, Lady Greengross, presented to us yesterday.
The unanimity of support for the Dilnot proposals is as great as I have ever seen. In my Second Reading speech on the Health and Social Care Bill, I reminded your Lordships that if you want to bring about change you have to build a consensus. There is no doubt that such a consensus now exists. That consensus is that it is inescapable that the future funding of social care has to be based on a combination of individual and state responsibility and contribution and that these proposals offer the prospect of a lasting settlement based on a partnership approach. That is not to assert that there is unanimity on every aspect of the Dilnot proposals. People are concerned about the level of the cap, about the fact that hotel costs are not included in the calculations, and about whether the life insurance product market will really be stimulated. I have no doubt that other noble Lords will speak about these concerns. Nor should we assume that the commission provides a total answer to the social care problems I have outlined, but these reservations do not detract from embracing its general thrust. The consensus that now is the time and that the general direction of the Dilnot report is right surely cannot be gainsaid. It would be sad and a failure of all of us involved in these important discussions if we allowed disagreement about details in the report and the valid arguments that are put forward to get in the way of action.
If you want to bring about change, another thing that you have to do is to make people, individuals, Governments, political parties and society itself see what they are going to gain as a result of the changes. What will they get out of it? That surely is clear. We will spend existing resources better. It will improve the integration of health and social care systems. When people’s need for social care is not met, they will turn to the NHS, resulting in increased numbers of emergency admissions or delayed discharges. The inconsistency between fully funded NHS care and means-tested social care the delivery of an integrated care system. Recent statistics from the Department of Health show an 11 per cent rise in the number of hospital bed days lost to bed blocking—I thought we had seen the last of those terms—so the costs have risen from £483,000 to £537,000 per day. In addition, if we adopted these proposals, the rights and responsibilities of individuals and agencies would be clear to the public. If people were clear about their future personal liability they could plan how they would meet care costs up to the level of the cap, wherever that was placed. We would also stimulate the care market to provide more choice for families and incentives for business.
The government consultation process on the report is under way and is to be commended. The engagement process is about to conclude. It has been helping people to put their views, and the leaders of the discussion streams will indicate the priorities for change. I hope that the Minister will be able to tell us more about the process of putting those priorities into action. I know that the Government are committed to a White Paper in the spring, but it cannot be stressed too strongly that action is needed, with the greatest possible dispatch, to take advantage of the near consensus around this issue at the moment. We hear rumours of the Treasury having misgivings about the cost of the proposals. Will the Treasury be involved in the decisions about putting the identified priorities into action? I hope the Minister will tell the House the answer.
Another cause for concern is how the Law Commission proposals on social care, which again have been widely welcomed, will be dealt with. I do not have time now to go into these in detail, but they would create a stronger legislative framework, are compatible with the Dilnot proposals and together would form the basis for a White Paper and subsequent legislation. Do the Government intend to combine their response to the Law Commission proposals with their response to the Dilnot report? The chance to do so has been called a once in a lifetime opportunity. It would be tragic if the opportunity were missed. Therefore, it is vital that we harness not only the consensus in the care sector clearly set out by the 52 organisations in the Care and Support Alliance but the willingness of political parties to cross party political divides in the interest of finding a solution to the social care dilemma. We must find political consensus. My own party has suggested ways of facilitating this. My noble friend on the Front Bench will say more about this and I hope that the Minister will respond to these suggestions.
In conclusion, the Minister for Social Care, in a debate on 10 November in another place, said that,
“when the decisions are made … I hope we will be in a position to legislate at the earliest opportunity. Social care has languished … in the ‘too-difficult-to-do’ box for far too long. We are the Government who are committed; we see the urgency and the need. I hope that together we can get the cross-party lead that results in the changes which are long, long overdue”.—[Official Report, 10/11/11; col. 181WH.]
Amen to that. I hope that the Minister today will give an equally strong commitment. We must not fail to grasp the opportunity that Andrew Dilnot and his colleagues have given us. I beg to move.
Baroness Pitkeathley
My Lords, we have seen great enthusiasm for the Dilnot Commission in the course of this excellent debate while acknowledging that it is not the whole answer, and while acknowledging its shortcomings. Even my noble friend Lord Desai admitted that it is the best chance we have. However, if the objective of the debate was to save Dilnot, as my noble friend Lord Lipsey proposed, I am not sure we can be confident that we have succeeded, judging by the Minister’s response. Even so, I know that as ever the House will be grateful to the noble Earl for the way in which he has responded and, indeed, confronted some of those inconvenient truths about which the noble Lord, Lord Sutherland, reminded us.
My noble friend Lord Warner robustly reminded us that doing nothing is not an option. As ever, the wisdom and expertise shown around the Chamber has been extraordinary, and there has been universal agreement that we need a lasting settlement based on a partnership between the individual and the state. We have also seen that we must have honesty and, above all, we must have political consensus, which will require a degree of bravery. I know that the usual suspects who have taken part in the debate—these guys, as we all are—will continue to apply pressure, as well as offer advice and consultation to stiffen the resolve of the Government and the Opposition to be brave, to bite the bullet and make this a watershed moment in the history of social care by responding to the call to arms. I thank all noble Lords who have taken part in this inspiring debate.
Health: Cancer Drugs Fund
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Earl Howe
One of our aims for value-based pricing is to give patients better access to innovative and clinically effective drugs, which, unfortunately, has not always been the case until now, hence the need for the cancer drugs fund. That is certainly one of our ambitions for value-based pricing.
Baroness Pitkeathley
My Lords, does the Minister agree that one of the problems with this very welcome fund is that still too few patients know about it? Is his department planning any information campaign to ensure that patients know more about it so that they can ask for access to the fund themselves, particularly in view of the more complex structure that they will face in the NHS when the Bill currently before the House is law?
Earl Howe
My Lords, the noble Baroness makes a good point. We endeavoured to publicise the fund in April when it was created. We have reminded the health service to make the fund’s existence known wherever possible. The specific answer to her question is no, we do not plan a publicity campaign. However, we wish to ensure that clinicians in the service are as fully aware of the fund as they should be. I believe that they are, certainly at the level of secondary care.
Health and Social Care Bill
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Baroness Pitkeathley
My Lords, charities have been campaigning about the VAT issue for many years. My charitable interests are declared in the Register of Members’ Interests. Without doubt, the VAT issue is an unfair burden and a major inequality in the charitable sector. Why should it be of concern to us? Let us think of what charities are good at. In addition to the services outlined by noble Lords already, charities are good at spotting gaps and funding innovative solutions. They are good at bridging gaps, especially between health and social care. They are very good at seeing patients or service users in their particular situations and providing services which meet their needs and not some notional need determined by an assessor. Those things are going to be tremendously important in the new NHS going forward.
Noble Lords should think of the contributions to care and health made by helplines, information provision, carer support groups and specialist nurses. They should think of the particularly significant service of incontinence supplies and advice—so vital to people with disabilities and to older people and their carers—provided extensively by charities. It is vital that charities are not only encouraged to continue to participate, but are also supported to do so—and not to be made subject to additional burdens such as those that noble Lords have outlined. The NHS and social care service cannot do without these services and, most importantly, patients, users and carers cannot do without them. Therefore, we must make it as easy as possible to provide for all qualified providers, including charities. I support the amendment.
Lord Turnberg
My Lords, I rise to lend my support for this amendment. I speak here as a trustee of the Wolfson Foundation, which has a programme of support for hospices and care homes and over the years has given many millions of pounds, largely for capital projects. VAT is a constant source of unhappiness to the trustees, and, in fact, they have reached the conclusion that they will no longer pay VAT for capital projects. This means, of course, that the hospices and care homes themselves will have to find that money, which is unfortunate. Therefore, I hope that the Minister will take this amendment seriously.
Health and Social Care Bill
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Baroness Murphy
My Lords, this is a topic very close to my heart. The delivery of social care is almost wholly towards people with health problems; if you do not have a health problem, a disorder or disease, you will not be in receipt of social care. But we have always had this curious distinction between who delivers what. We have had these great silos whereby enormous amounts of spending in the health service would be better spent transferred to social care services. We have known that for years and years, but it has not really happened as fast as it should have done.
The commissioning and delivery of services has been almost wholly down these isolated silos. We have tried to chisel away at this over the years with joint trusts for delivery of services to children and other joint trusts for delivery of services to mental health, and so on. But for the mainstream older person coming through healthcare services, we have not had that integration very effectively, and we have therefore wasted money buying health services when we should have been buying social care services. So it is crucial that people get better cost-effective packages of care, which include the whole pathway.
It is also true that we have a system at the moment whereby in the past 20 years we have moved hundreds of thousands of seriously disabled older people out of NHS care into independent sector nursing homes and, in the beginning, local authority care homes and contracted private homes, leaving behind the teams of people—healthcare professionals, medics and nurses who used to care for them in hospitals—completely isolated back in the hospital. They are not delivering those community services that the independent sector nursing homes and local authority care homes so desperately need to provide—comprehensive health and social care service in residential care. It has always seemed extraordinary that we have allowed these silos to grow up, whereby the person sitting in the hospital, the consultant geriatrician or the psychogeriatrician, does not think that it is their business to provide a service for the wider community of patients in their patch. It seems extraordinary to me that we could have got ourselves into this position.
We need something to move back again to a situation in which people think epidemiologically about a community, about how the best services could be provided from vertically integrated care between hospital and community services—and of course that community care must start with what comes from primary care—but also fundamentally from what is commissioned from social care as part of the package. Perhaps we can get it in somewhere in this Bill that we need to do this. We all know about Kaiser Permanente and the examples of how it works in the States. It works very effectively when you can commission from a range of services across health and social care directly. That makes a great deal more sense than trying to narrow the trenches; a trench always pops up somewhere else when you chisel away at a trench between local authorities and NHS authorities. You do not need to do that if you are very clear about commissioning a package of services across the divide and across NHS primary care and social care. This is extraordinarily important as the population continues to age and, without it, we will not be able to generate that wonderful £20 billion of savings that we are always going on about. We will get better value for money if we contract across an integrated care pathway across health and social care.
I do not know whether this is the right point to get this proposal in. Like the noble Lord, Lord Warner, I am sure that it should go somewhere and that we should have a real commitment in the Bill. If it is the right point, we can get people to translate this into the sort of unbundled tariff that we need to get the financial packages right and move away from the counterproductive system of payment by results. Unfortunately, that again tends to fossilise an old-fashioned way of doing things, which is too expensive. I give my full support to this amendment.
Baroness Pitkeathley
My Lords, my name is added to some of these amendments and I will add little to the eloquent speeches of my noble friend and of the noble Baroness and the noble Lord from the Cross Benches. I want to endorse only the important points of principle that they have set out. As someone who has spent a large part of a long working life at the margins or the crossover points between health and social care, I am only too well aware of what goes wrong if you do not have proper integration. It is very important, as the noble Lord, Lord Patel, reminded us, to come at this from the experience of the patient, the user and the carer. Their needs rarely come neatly packaged as health and social care; there is always crossover between them. That is especially true in the case of long-term illness but it is also a concern to those who have had an acute episode, especially in these days when people are discharged early from hospital but still need medical, nursing and social care at home.
Almost 40 years ago, I wrote a book called When I Went Home, a study of patients discharged from a local community hospital. One patient I interviewed said to me, “What I don’t understand is why they don’t talk to each other. Why did they discharge me without arranging it with my family—without even telling my family I was coming home—and why weren’t the services I needed at home all geared up for when I got there?”. I have lost count of the number of times that I have heard this story repeated over the years. Patients, users and carers do not understand different funding mechanisms, professional boundaries or sensitivities about exchanging information—and why should they? We have been saying for at least 40 years that we must improve integration. Let us for goodness’ sake use this reform as a means of achieving more commitment to integration, to which everyone pays such a lot of lip service but which in reality is still sadly lacking.
I must emphasise that we are at a point where not only do we risk not making integration better but where it could become worse if we do not really emphasise the importance of integration in this legislation. I am thinking of things such as the pressure on local authority budgets and on the voluntary sector, which is so often such an important part of an integrated care package. I am thinking of the mismatch in timing between the reforms in social care and those in the health service. I always think, too, that we should remember that it is people, not structures, who promote integration. Those currently employed in health and social care are working in a confused situation. They are often uncertain about their futures and their working relationships. They are therefore really not in a good place for cutting across professional boundaries and perhaps giving up some of their power to develop the flexible ways of working which are so necessary for integrated services. We owe it to them, as well as to the patients, users and carers, to be as explicit as possible about the importance of integration. I hope we will do that in this Bill.
Baroness Cumberlege
My Lords, I would like to make a contribution. I was very interested that the noble Lord, Lord Warner, said in his introduction that he felt that integration was sometimes used as a defence against competition. He cited Kaiser Permanente, as did the noble Lord, Lord Patel. Closer to home, I was really interested to see that Assura Cambridge—Assura is an independent company—was involved in an integrated care organisation. It was a pilot that was designed to improve the quality of end-of-life care locally and to ensure that 50 per cent of patients who knew they were dying would do so in a place of their choice. After five years, the aim is to increase this figure to 75 per cent.
Assura Cambridge, which is a partnership between Assura Medical and 16 GP practices in Cambridge, worked with a range of care providers to plan, co-ordinate and improve the delivery of care to patients in the last year of their lives. The project team was led by Assura Cambridge and included representatives—this is important because it shows real integration—from Cambridge University Hospitals NHS Foundation Trust, Cambridge Community Services, NHS Cambridge, which is the primary care trust, the Cambridge Association to Commission Health and the DoH integrated care organisation pilot team. This collaboration and partnership had a very simple system, which was to use “just in case” bags. The system was adopted to ensure that GPs had the appropriate medicines to hand for terminally ill patients in advance of their need. By taking this very simple step, the integrated care organisation was able to ensure that 87.5 per cent of deaths occurred in the patient’s usual residence or place of choice, compared to only 50 per cent of deaths without using the system.
In this case it was Assura Medical that acted as the glue to ensure that collaboration brought about an integrated solution, which has since exceeded the project’s aspiration. That is very interesting: it needed someone from outside the NHS to bring all these people together. When I talked to some of them, they said, “We haven’t got the time to do that. We just couldn’t fit all that together”. It was an outside organisation that was able to do that.
Recently I went to the Royal College of GPs’ annual conference in Manchester—no, I am sorry, Liverpool; I know there is a great difference between the two, but I have been travelling a lot recently. There was great debate about the ethical issue of GPs commissioning. The person promoting this was Professor Martin Marshall. He asked the audience of GPs—the place was packed—what the most frequent diagnosis that came through their surgery door was. As you might expect, the GPs mentioned coronary heart disease, diabetes and so on. Professor Marshall said, “No, it’s LIS”, and everyone looked very puzzled. He said, “Lost in the system”. I thought that was interesting. “Lost in the system” is the problem when we do not have integration.
It seems to me that integration happens on three levels, so maybe we have to define it more closely. The first is within community services. A GP said to me the other day, “District nursing—they’re the enemy”. When you start at that base, we have an awful lot of work to do just to get integration within the community. As the noble Lord, Lord Patel, said, you have to get the whole team to work, and to work beyond the team as well.
I have done a bit of work with maternity services. This is the next tier up—integration between community and hospitals. One of the things that we have tried very hard to do is to get midwives to have caseloads, so that they are there when the woman is pregnant, looking after her. They will perform the delivery, which will not necessarily be at home—it can be in hospital—and then do the postnatal care. It is brilliant. It is what women want and it provides continuity and integration. Try getting that to work—it is very difficult, because of the territories; hospitals often do not want the community midwives to come in, on to their territory, and perform the delivery. Integration happens in some places but it is very hard to roll out. That is the second tier—the hospital and community tier.
Health: Diabetes
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Earl Howe
My Lords, my noble friend is to be congratulated on his campaign on this issue. Of course, I agree with him that if you are obese a reduction in “calories in” will make the most difference to regaining a healthy weight. He is absolutely right. If there is a respect in which NICE needs to amend its guidance, I am sure that it will be listening.
Baroness Pitkeathley
In view of the very well established connection between obesity and diabetes, and the associated resulting problems such as amputations, gangrene and so on, does the Minister consider that the Government’s policy on obesity is now adequate?
Earl Howe
My Lords, we are clear that obesity is a major problem—we have recently had a number of exchanges in this Chamber about it—and we are committed to promoting active lifestyles. Tackling obesity will support that, as will the health check. We are fully engaged in the Change4Life campaign, which raises awareness of the importance of maintaining a healthy weight and being physically active. The obesity challenge is not capable of being addressed or met by government alone; it is a matter for everybody—a matter for people taking responsibility for their own healthcare. Government and industry have a part to play in food formulation, as do the retail and catering trades. It is an effort across society that will beat obesity.
Health and Social Care Act 2008 (Regulated Activities) (Amendment) Regulations 2011
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Lord Collins of Highbury
I thank the Minister for his remarks about the regulations. I must admit that when I read the words:
“These Regulations may be cited as the … Regulated Activities … Regulations”,
I felt as if I was participating in a Marx brothers’ movie, as you wonder which part relates to which. However, behind the regulations lies a very important human story. I want to focus my comments and questions on some of those issues. The Minister referred to the fact that in respect of NHS primary care services there is clearly a risk that the problems which the Care Quality Commission faces now could still apply in 2013. Apart from simply delaying the requirement to register again, has the Minister any other contingency plans to deal with the capacity problems in the CQC?
A human-issue story concerning out-of-hours services relates to the report that the CQC wrote arising out of the Daniel Ubani case, where the real risk posed to patient care from out-of-hours services was apparent. I would like the Minister to spell out how the small number of—
The Deputy Chairman of Committees
My Lords, there is a Division in the Chamber. The Committee will adjourn until 4.29 pm, taking note that the Clocks in the Room are an hour fast.