Care Services: Older Adults and Disabled People — Debate

– in the House of Lords at 11:37 am on 19th March 2009.

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Moved By Baroness Fookes

To call attention to the care of older adults and long-term disabled people; and to move for Papers.

Photo of Baroness Fookes Baroness Fookes Deputy Chairman of Committees, Deputy Speaker (Lords)

My Lords, in moving this Motion, I am reminded of a conversation that I once had with the late Enoch Powell, who explained that he never made an important point during the first two or three minutes of his speech so that those who were rushing in to hear him would get its full effect. When I pointed out that it might be the reverse in my case, with people rushing out—we see the proof of it now—he replied, with impeccable logic, "The principle remains the same". None the less, I feel constrained to move swiftly to this very important subject.

The statistics are quite frightening. We now have about 11 million people of pensionable age, and that figure is likely to rise considerably in the next 20 years, with those over the age of 80 becoming even more prominent. We have about 2 million blind or partially sighted people to care for. Some 7,000 people—I mean 700,000; would that it were 7,000—are suffering from various forms of dementia. Again, we are told that in the absence of any medical cure, that number may well rise to 1 million within the next 20 years.

The amount spent is very great. On present arrangements, it is about £13 million, but that of course leaves aside payments made through the benefits system and the incalculable amount provided by carers, described formally as the "informal carers", which means in practice that they are paid nothing for the work that they do. I would be interested if the Minister could give an indication of the monetary effect if all the informal carers suddenly disappeared. I think that it would be a frightening figure. All is not well in the system as it stands, caused partly by what I call a crucial and essential fault line in it—the division between health and social care and the payment of benefits. We are always being told that the NHS is free at the point of delivery while social care, delivered by the local authorities through their social services departments, is means tested. So the system is complex and unfair, and people do not know where they are with it. The most notorious effect is on those who have to go into a care home. It is a traumatic experience on its own, and one of the most crucial and terrible decisions someone has to make. It is made infinitely worse if they know that the value of their house has to be taken into account in deciding what level of care they receive.

It is also extraordinary that many of the people now entering care homes are suffering from Alzheimer's or similar conditions which I understand—the medics will correct me if I am wrong—is a medical condition and a fault in the brain. Patients become confused, are liable to wander, suffer memory loss, and it then becomes social care for which they then have to pay. What is more, the regulations are not easy for people going into such care to understand. In the course of my researches I found a very interesting paper prepared by the House of Commons Library for MPs with constituents with these problems. It explained that the system and rules were complex and lengthy, and that it could give only a brief guide. That brief guide consists of 17 pages of close print. It is no wonder that people do not understand what it is.

Let us look at the eligibility criteria, which vary from local authority to local authority. Although some attempts have been made to standardise them, they can still be difficult for people, especially if they move from one local authority to another. We had a terrible example of that during the debate on the Bill introduced by the noble Lord, Lord Ashley, last week. Someone moved to another authority and not only did they not receive the same package, they received no package at all until it had been worked out anew what it should be. With the monetary problems that all councils now face, it is tempting to tighten up the criteria. If someone is no longer eligible, the authority can save money. We have evidence that this is happening, and it is effectively rationing by the back door, so all is not well.

We expected the Government by this time to give some clear guidance on the way forward for the system of care for older people and those with long-term disadvantages. They seemed to start brightly enough with the new Prime Minister saying that it was wrong for people to have to sell their homes to pay for care, and setting up a royal commission which reported some 10 years ago, but very little has happened since. There has been a bit of tinkering here and there and we were promised a Green Paper in spring 2009. Spring has arrived, so where is the Green Paper? Maybe the Minister can tell us when we may expect it. But, let us face it, even if she were to announce its contents this afternoon, a Green Paper is by its nature a discussion document, and one can expect some months of discussion before a legislative programme is put forward. However, as we are nearly at the end of this Parliament—it cannot go more than about 14 months at the most—in practice we will see nothing by way of a new deal this side of the general election.

In the absence of clear guidance from the Government, various organisations have put forward their own schemes, notably the King's Fund, in the shape of the Wanless report which came out with some very interesting proposals, particularly on the financing of care. It very sensibly said that one cannot expect the state to do everything, but that we need a clear division of responsibility so that everyone knows where they stand. It put forward about four options, one of which Sir Derek Wanless particularly liked and called co-payments. I prefer another one, which he called limited liability, which is very similar to an option put forward by the Conservative Party, whereby the person concerned is means-tested for the first two, or perhaps three, years, and thereafter the state picks up the tab, so at least one knows that there is an end in sight in what can otherwise be a very alarming situation for the person concerned.

We need to look far more carefully at empowering people to help with their own way of caring. In the past, a person has been on the receiving end rather than being a partner. It is part of the "Does he take sugar?" syndrome. Noble Lords may remember the Radio 4 programme of that name about the needs of disabled people and the tendency for people to ask, "Does he take sugar?" when the person is sitting there and can quite well say, "Yes, I do," or "No, I don't". That is something we need to build firmly into any new system. That is why I favour the idea of direct payments where, instead of the social services department deciding what should be done, the person or, more likely, the informal carer, will be given the possibility of deciding exactly what form the care should take. However, there are pitfalls, and where it has been tried out, it is plain that people need to be assisted with the administrative side. It is no good expecting them to take on responsibilities for payroll, national insurance and all that goes with them. It seems to work well where there is a third party to whom people can turn to carry that out for them. That is something I would like to see universally adopted.

Even more radical—but it comes up against my fault line, as I have described it— is the idea of bringing together all the various streams of funding into one package so that there is even greater freedom. However, that cannot happen while we have this divided responsibility. Local authorities which have tried to work this have seen that there is an absolute bar on carrying it out properly.

What of the carers who play such a crucial role? I feel very sorry for some of them, for many of them in fact, because they have often given up their own careers or have made them much less successful than they otherwise would have been. They have been tied night and day, and they have constant worries about what might happen if they are not able to carry out those responsibilities. Some of them must feel like an old banger of a car made to work day after day, doing unending mileage with minimal maintenance and certainly no servicing, until they end up as a virtual wreck. Before we do anything else, we need to look to helping carers. I believe that one of the things that would most help them would be respite care universally provided if they want it. It is very much easier to go on if you know that you can stop for a while. The other point is that unexpected emergencies will sometimes occur and put the carer in a very difficult position. Carers would like to know that there is an emergency aid post, as it were, to which they could go if unexpected circumstances make it impossible for them to care. Those two items alone would do much to improve the lot of those on whom we rely tremendously.

One further point comes from the idea of people being partners in their own care. We need to go beyond the minimal package to make sure that people can eat, dress and all the rest of it; we need to make sure that they can live fuller, more interesting lives. The noble Lord, Lord Rix, will remember that when we were considering the Mental Capacity Bill in Joint Committee, one of the most moving sights was that of people with a learning disability coming to give evidence before us themselves—not people speaking on behalf of them, but them speaking for themselves. One of the points that they made was how much simple things such as choosing their own breakfast or wearing their own clothes meant to them. I give that as a simple illustration, but it can be extended way beyond that to people with all kinds of disability. For example, people who move into a care home may miss terribly the pet which they have had for years. We could do far more in care homes if we allowed pets where people wanted them. That is a simple thing, it need not cost a great deal, but it would make all the difference in the world to the quality of lives.

Recently, I went to a dance performance at the Queen Elizabeth Hall—other noble Lords may also have attended—to watch the Candoco Dance Company, which mixes disabled and able-bodied dancers in one troupe. It was an amazing performance and it was very difficult to tell the difference between those with disabilities and those without until it was made clear to us. Who would have dreamed of that happening years ago? That is an indication of what could be done. Years ago, I remember my mother, who was a very keen bowler of county standard, being delighted to help with bowls matches for those who were blind or very partially sighted. I never quite knew how that was managed, but I know from what she told me that it gave great pleasure all round. We need to be far more imaginative than we have been hitherto. I pay tribute to those organisations which provide activities for people. I think in particular of the place where I was an MP, in Plymouth, where Plymouth Age Concern had done a magnificent job in making all manner of provisions for their people and had immensely improved their lifestyles and happiness—and probably their health as well.

There is a great deal to be done. I can only touch the surface of it in this opening speech, but I look forward to the contributions which will be made hereafter in the debate. If we wanted a single example of the contribution that older and disabled people can make, we need look no further than this House itself, where the average age is 69. I rest my case.

R

""the incalculable amount provided by carers, described formally as the "informal carers", which means in practice that they are paid nothing for the work that they do""

""Before we do anything else, we need to look to helping carers.""

As the number of elderly/disabled increases over the years, more and more will rely on family members to provide some care,care which would otherwise have to be provided by state-funded social care staff.
Carers are the backbone of this country and need more support both financially and practically.

They do not belong within the main benefit system and should remain seperate.Purnell is WRONG in his long term vision of them fitting in to a single working age benefit.Carers already work,they do a minimum of 35 hours per week for £50.55 a week, the lowest earnings replacement benefit.

Baroness Fookes mentions eligibility criteria and how LA's are tightening said criteria.In the long term this will not work and does not work now.All they are doing is delaying the inevitable in that many people will need help in a crisis.Where is the preventative measures being put in place? Waiting till someone is classed as Critical is Bad Management and once again in the mean time more pressure will be placed on families.

Again the Baroness said ""There is a great deal to be done"". Never a more true word spoken.

Its common sense when building something new that you start from the bottom with a solid foundation and that is what family carers are.

Submitted by Rosemary

Photo of Lord Lipsey Lord Lipsey Labour 11:53 am, 19th March 2009

My Lords, first, I should declare a couple of interests as president of SOLLA, the Society of Later Life Advisors, and as a member of the editorial panel of the study into decumulation—sorry about that word—being carried out by AIFA, the Association of Independent Financial Advisers.

This debate, so admirably introduced by the noble Baroness, Lady Fookes, is timed just as we celebrate—I suppose that that is the right word—the 10th anniversary of the royal commission on long-term care of the elderly chaired by the noble Lord, Lord Sutherland of Houndwood, to which the noble Lord, Lord Joffe, and I signed what was in effect a minority report. Pretty well everyone who commentates on this field believes that we need to move on from that royal commission, which palpably did not lead to the introduction of a permanent solution to the problem. By all means let us move on, but there is one thing which it is not possible to move on from. That is the dilemma that in the end prompted the noble Lord, Lord Joffe, and me to write our minority report: there is a limit to the amount of money that government—society—are willing to devote to the care of elderly people. Within that limit, we face and always will face a choice. We can spend money on paying for services which, at the moment, better off people have to pay for themselves, or we can spend that money on better services, more care, more help for carers, smarter housing for people living in their own homes and better care homes—all are services that people need. I am afraid that in the real world we cannot do both. In Scotland—the noble Lord, Lord Sutherland, may talk about this—they have tried to defy this logic by introducing free care. The consequence, besides runaway costs, has been the severe rationing of services.

South of the border, we await the Green Paper—my God, we may have climate change but spring gets later and later in Whitehall. I meant to say that as we await the spring White Paper, the situation is not much better. Ministers, led by the Prime Minister, have canvassed radical reform of the care system for all the good reasons set out by the noble Baroness, Lady Fookes. Charities for the elderly are demanding that more be done to help with the costs of long-term care. I give an example. The Joseph Rowntree Foundation, which has done some very useful work in this field, puts forward four possibilities for a partial reform: equity release, higher capital limits for care home fees, higher personal allowances for care home residents—which of course I particularly support—and free personal care for people needing nursing care. The foundation says that even in the present climate, these provisions can be afforded. Well, they cost £800 million, so it obviously has a different view of what the present climate is like than I do.

The landscape of "realityland" is very different. The last public expenditure plans provided for an increase in spending in this field for elderly people of just 1 per cent a year on social care. That 1 per cent is dwarfed by the costs implicit in the ageing of the population. Local authorities, as CSCI among others has pointed out, are having to cut home care for all but the most severely disabled older people. This actually means that the less severely disabled will deteriorate and have to go into homes rather than be cared for at home, all in the interests of short-term economy—that is a disaster—and that 1 per cent was before the credit crunch. Now, thanks to the crunch, the Government are borrowing billions to bail out banks, and the interest on those billions will have to be paid when the recession is over.

It we turn from the social pages of the newspapers to the economic pages, we see a complete consensus that public spending is going to be subject to an eye-watering squeeze. No one wants to cut health or education, but in these circumstances and in my judgment, the chance of the Government funding a major new programme of spending on social care is not high. We must use the public money we have to better effect—that is pretty obvious—but in this bleak landscape, many of the hopes voiced by the noble Baroness and which will be voiced by others in the debate are only hopes.

I have one other positive proposal. There will not be a lot more public money. It follows, therefore, that if we are to make headway, we must look at the potential contribution from the private sector: something that has been almost entirely neglected. One example is the role of equity release. Despite the recent weakness in house prices, most people retain substantial equity in their homes. This is particularly true of elderly people who often bought their homes years ago when prices were low. Equity release enables them to access this asset to pay for care. Some very good work is being done in this field by the Safe Home Income Plans organisation, which will be published shortly. It is a way in which people can pay for care of all kinds, whether it is care at home or care in care homes.

Another is the development of private insurance for care costs. This has been terribly in the doldrums for reasons that I do not have time to go into, but backed by Ministers and if certain tax problems were sorted out, it could play a real role in taking from people the worry of how they are going to pay for their care if they need it. This is for better off people, it is true, but it is they who have to pay under the present system.

Wearing my SOLLA hat, we are all used to councils advising people what to do, but neither they, nor social workers, have a monopoly of wisdom. SOLLA is designed to increase the skills of independent financial advisers who choose to work with the elderly, get to know what they really need and give them advice. Often, that is what they need most because it is such a bewildering landscape and good advice is priceless.

Private provision of this kind is not a substitute for public provision, even though I fear that public provision will become more of a safety net. The SOLLA report said as much. It said that we have to plan for public expenditure on the basis that it will be a safety net and not a duty of local authorities. It will not be a substitute, but it can be a useful supplement, particularly for the better off who should pay for their care from their own resources and not from the limited resources of the state and the taxpayer.

Photo of Baroness Thomas of Winchester Baroness Thomas of Winchester Spokesperson for Work and Pensions 12:00 pm, 19th March 2009

My Lords, I, too, congratulate the noble Baroness, Lady Fookes, on the eloquent way in which she introduced this important debate. This issue will get more acute as the population ages. As the noble Baroness said, not only will the population age, but more and more long-term disabled people will want to live as independently as possible, which was the subject of the debate on Friday. I will not repeat what I said then, nor will I ask the Minister when the Green Paper will be published, although I was going to. This is a difficult climate in which to try radically to overhaul the social care system, but that should not prevent the Government from doing more than tinkering around the edges. However, there will be many consequences of the downturn, not least for local government. I believe that my noble friend Lady Barker will explore some of those matters further in her debate next week.

Today, I shall draw on the Hampshire commission's report into personalisation and the future of social care, Getting Personal: A Fair Deal for Better Care and Support, which brought together not just local politicians across all parties but experts from all over the country with a social services background to look at the future of adult social care. The commission reported last November. Its recommendations are well worth studying and range from action that can be taken locally to that which needs legislation. An example of the latter is that the commission, in common with many Members of your Lordships' House, believes that the carer's allowance should continue to be paid to those aged over 65 in receipt of the state pension. That is not allowed at the moment because of the overlapping benefits rule.

The Hampshire commission's first recommendation is the universal offer, which would have to be made by the Government nationally. It would include access to information, advice and supported self-assessment for all, regardless of their level of need or their financial situation. Those with more intense and urgent care needs would have a right to brokerage to support planning and arranging care, regardless of means. Furthermore, the Government would have a duty to promote and publicise the scheme so that everyone would be aware of their entitlements. That is a sensible proposal and means that no one would be given short shrift just because they had not been assessed as eligible for social care.

People who need care—usually older adults—told the commission that they felt "lost and bewildered" when trying to get health and social care. They felt unsupported in trying to access information, even when they were eligible for services, while those who were ineligible often got no information of any kind. A carer's story reported in the Hampshire commission's report is typical. She said:

"My mother was in hospital after a stroke. The consultant advised that she would not be able to walk unaided, feed, dress or wash herself again and that we should find a nursing home for her. It was suggested that we should talk to the hospital-based social services team. We did, and on hearing that she would be self-funding, the shutters came down, and the help and information offered was zero".

That attitude simply will not do.

Some respondents to the survey were distressed that social services were not interested in giving any advice when they asked for just a little help, such as that which used to be given by a home help, even to elderly people who lived alone and had recently been discharged from hospital. Unless these people cannot wash and feed themselves, no one seems interested in how they are going to manage, yet having someone looking in to see if a person is all right can make all the difference to their lives. It is not always possible for elderly people to ask family members or neighbours to keep an eye on them. Many have no family left and, if they are housebound, they are increasingly out of touch with their neighbours, particularly if they live in urban areas.

The second recommendation of the Hampshire commission's report is another sensible proposal: that urgent social care should be free for up to eight weeks for all those at risk of admission to hospital or who are being discharged from hospital, where there is likely to be joint care with health. The report states:

"The fact that health is free at the point of delivery and social care is means tested is a persistent barrier to joined-up services and can be particularly hard for people to understand at points of crisis".

This finding chimes with that of Age Concern and Help the Aged when they state:

"Most people also hold incorrect assumptions about entitlements to social care, thinking that care and support is free at the point of need, like the NHS".

The Wanless report of 2006 makes this point strongly:

"It often comes as an unwelcome surprise to older people to discover that social care is means-tested and they are expected to rely on their own savings and income until their assets have fallen to the threshold set for state-funded care. It is a common complaint that the existing system penalises those who have saved for their old age".

The commission strongly supported the principle of personalisation of social care, saying that there was now evidence that the poor take-up among older people in Hampshire was beginning to change and that outcomes were improving. It said that the current system through which people obtain social care was,

"opaque, localised and hard for people to understand".

The report demonstrates that self-directed support in Hampshire can be highly successful in making life better for older, frail people and those with complex and high-level needs when they are given the right amount of time to make decisions, the right support and real freedom of choice.

There are many more proposals in the Hampshire commission's report but I will mention just one more, which I think is vital: the importance of training more people in the caring profession. The report makes the point that the current social care workforce is ageing and that there is a need to attract more young people into care work, including those for whom it will be a stage in their career rather than a career-long choice. With the growth of personal budgets in health and social care, a workforce with wider skills than ever will be required to fulfil all the different roles that will be required, including personal assistants and those able to offer advocacy, brokerage and support planning.

Photo of Baroness Emerton Baroness Emerton Crossbench 12:08 pm, 19th March 2009

My Lords, I thank the noble Baroness, Lady Fookes, for initiating this debate and for so ably setting the scene on a pertinent subject at the moment given the increase in the numbers of older people. Most elderly and disabled people wish to maintain their independence and dignity and it is important that everything possible is done to ensure that this is made possible by engaging, as we have already heard, whatever agencies are necessary, whether that is for care at home, residential care or hospital care.

It saddens me as a retired practising nurse that the care of older people is having to call for remedial action in order to ensure that basic needs are met. Only this week, the regulating body for nurses and midwives, the NMC, has issued guidelines for the care of older people. The document highlights six key points of guidance that reiterate the requirements of basic care. The document was written by a nurse, who was so horrified at the treatment her father received before dying that she has, as a result, taken up the challenge and developed highly innovative ways of treating older people. She was commended at the recent nurses' national award ceremony. This guidance is designed to demonstrate best practice for all nurses working in hospitals and the community.

Much work has been done to improve the care of older people but more remains to be done. Five years ago, after a flourish of bad publicity on the care of older people, my noble friend Lady Cox and I, both retired from practice, thought we should find out whether there was any truth in these dreadful reports. This we did by bringing together a small group of senior nurses representing management, teaching, research and practice. After two meetings we agreed as a group that there was evidence supporting these reports and that we should try to do something about the situation.

Two members of that small group were members of the Burdett Trust for Nursing who persuaded the trust to commission a piece of work, resulting in the publication in 2006 of a report entitled Who Cares, Wins: Leadership and the Business of Caring. The conclusions for healthcare providers were that they need to,

"clarify how the 'business of caring' will be led and managed in their organisation. Structures and processes for patient, carer and public engagement may need to be rethought ... be specific about the quality measures they will achieve ... establish a conducive organisational culture that puts patient experience at its heart", and,

"agree appropriate indicators of how well they are performing in relation to patient experience".

The report was supplemented by an explanatory study of the clinical content of 60 NHS trust board meetings. Only 14 per cent of the 60 sets of minutes contained any clinical mention.

Members of this House will be familiar with the great deal of progress that has been made since the publication of that report, thanks to the NHS review conducted by the noble Lord, Lord Darzi, with its strong emphasis on high quality care. In addition, the Burdett Trust for Nursing commissioned a further piece of work through the King's Fund, which has just published a report entitled Ward to Board. This was a study of seven pilot units that worked through the recommendations of the Who Cares, Wins report. Within the past few weeks the Royal College of Nursing has published a further report, Breaking Down Barriers, Driving Up Standards, a study into the ward sister's and charge nurse's leadership and managerial roles. I hesitate to mention more reports, but these all point to the need for effective leadership, from the patient to the board, with the appropriate accountability and authority at all levels. There has to be a balance between finance and quality but, regrettably, the most recent Healthcare Commission report into the Mid Staffordshire Foundation Trust demonstrated clearly that the emphasis was on financial targets to the exclusion of high quality clinical outcomes.

Against that background of needing to balance the delivery of high quality care through effective leadership roles with defined accountability and authority within the allocated financial resources, I shall move on to the principles that apply specifically to the care of older people and those disabled people requiring long-term care. That reminds me of the work that I did over a period of 10 years in the late 1970s and into the 1980s, with those suffering from learning disabilities and psychiatric conditions, with which my noble friend Lord Rix, will be familiar. These services had suffered as what were described as "Cinderella services" through a lack of resources in both finance and a specially trained workforce. Restoring the balance to high quality care required leadership, tenacity of purpose and the ability to champion change. During that time there were several inquiry reports all sharing 30 of the same areas of mistakes that led to poor quality care.

Thankfully, we have moved on, but we cannot afford to ignore the signs that indicate that in some areas there is poor quality of care where clinical pathways have not been established and sufficient resources made available, either in hospital or the community. It is at our peril that we ignore the opportunities presented by the next-stage review, the other supporting reports and guidance from the regulator. Each indicate the direction needed to be taken to ensure that these groups of people receive the high quality care and support that they deserve, to allow so far as possible a fulfilling life of independence and dignity that does not impose impossible strain on their families and friends who undertake the caring function.

The enabling legislation in the current Health Bill clearly sets out ways forward for raising standards. It is important that work is already in hand, led by the Chief Nursing Officer, Dame Christine Beasley, towards implementing the recommendations of the Minister's review, encouraging the development of education for nurses and midwives both pre-registration and post-registration, bringing in teaching to establish best-evidence practice of high correlation of theory to practice and the work introducing measurement of quality care, all working towards enabling staff and empowering the people towards high quality care.

However, could not further consideration be given to how implementation can be achieved by building on leadership skills, championing change processes within the appropriate attitudinal approach and sensitivity required for the compassionate care needed by this group of older people and those suffering from longer term disabilities?

Photo of Baroness Greengross Baroness Greengross Crossbench 12:15 pm, 19th March 2009

My Lords, the noble Baroness, Lady Fookes, spoke so eloquently about these important issues and I congratulate her on securing this debate.

We know about the ageing of our population and we know that the huge numbers of older people will include many with acquired disabilities even if they did not have them earlier, so we are talking about very large numbers of people. Yet unfortunately age discrimination is still rife and those older people who need care and support often get much smaller packages than young people who have similar needs. I remember saying very often that if you are going to get a disability, make sure you get it before the age of 64 because your benefits and the help you get will not be the same if you are older. That is really unacceptable and it just goes on.

We need a clear timetable for reform where it is so urgently needed. All the different payments and care sources need to be brought together so that people who are frail and vulnerable and often in a crisis situation—where they and their families may be in urgent need of advice—do not have to go from one place to another. If you are frail, old and tired, you cannot always do that. People just need a one-stop shop where they can get the advice and help that they need without charge and they know exactly what is going to be available to them.

We also really need to have human rights embedded in the services that are provided. Human rights can do a great deal to ensure dignity and respect for people, and should be at the heart of commissioning as well as regulation. At the moment an awful lot of the help that is provided has become more and more task-oriented and time-limited. If a care assistant or a worker goes into somebody's home they just have time to get them up or put them to bed. They do not have time to deliver the humane care and the kindness really needed by the sort of people we are talking about, who are very vulnerable, often very lonely and desperately in need of help.

The personalisation agenda is very good. It can help enormously and, as the noble Baroness, Lady Fookes, has said it must be introduced with a high degree of sensitivity, recognising that a lot of people will need continuing help in managing the care package they will receive. That package and the resources allocated to it should be fair and transparent; it needs to be outcome-focused, as Age Concern and Help the Aged have stressed continually. Free advice is essential and funding remains an enormous issue.

On dementia, which the noble Baroness, Lady Fookes, underlined, 75 per cent of people in care homes today suffer from some form of dementia, but two-thirds of all sufferers are actually still living in the community. This is a desperate situation, not just for them, but for their families and those who care for them. Unfortunately, we know that the early stages of dementia are often misdiagnosed and that dementia research is abysmally underfunded. It receives just 2.5 per cent of the Government's medical research budget, but more people suffer from this than suffer from cancer or heart conditions. It is an urgent need. We must get more research done because we must find the answers to this huge problem.

The national strategy is excellent, but there is no mention in it of research funding, which is a huge omission. An awful lot of people suffering from dementia are at the beginning of an appalling journey into the care system. Discrimination is even worse when we talk about dementia. Even calling it "social care" when other illnesses come under the NHS is one form of discrimination that should not continue.

We have heard it eloquently said that a new, fair system of funding must be found for residential care. There are all sorts of proposals, some of which are excellent. The organisation with which I am connected, the ILC, has proposed a national care fund, which is an interesting idea. However, whichever system is used, whether it is that proposed by Wanless, the Rowntree Foundation or the King's Fund, we must soon find an answer. We must also do something to protect the self-funders, who are often subjected to an illegal, unpublicised tax by having to pay extra to care home managers to fund their care because their local authority's funding does not cover it. That is not the way in which taxes should be levied in this country.

We must find a way of ensuring fairness and equality in the long-term reform. If we cannot get it from the Green Paper, we have to hope that the equality Bill will do something to ensure that it happens before very long.

We know that preventive care has virtually disappeared in recent years, so the people we are talking about are left without the help that they need. I hope very much, as has been said, that the Green Paper is not lost as the forthcoming election draws closer. We need a single budget as the basis of assessment. The transformation agenda could do a great deal to make this a reality.

One-third of men and a half of women over 65 will need some long-term care. There is a strong case for bringing the funding streams together and producing sound advice for every family facing these serious and difficult issues, which are not easy to face. We must have a service which puts the individual and their family first and which gains the confidence of all our population, both young and old.

Photo of Baroness Gardner of Parkes Baroness Gardner of Parkes Conservative 12:23 pm, 19th March 2009

My Lords, I congratulate my noble friend Lady Fookes. I am always amazed by the marvellous speeches she makes without even a note in front of her, none better than today's on this important subject. I am pleased that we are debating this subject, but it is tremendously wide. We have heard about so many aspects of it already and I am sure that more will follow.

The noble Baroness, Lady Greengross, commented on dementia, which has to be very high on the list of priorities, because it is a living bereavement. Some people who have advanced dementia respond better to a formal, official, regimented type of care than to their own relatives, whom they no longer recognise. There is a Member of this House whose husband was having such care. When he was brought home, he said that he wanted to go home, by which he meant the care home in which he had been. That of course was very upsetting for her.

The noble Baroness, Lady Masham, who cannot be here today and who has done so much for disabled people, has asked me to raise the need for disabled people to have adequate help with fuel because, being unable to move, they feel the cold much more than anyone else. That applies also to people who are unable to move due to illness. The noble Baroness also thinks that there should be free prescriptions for the long-term disabled and says that it is most unusual that some people get them and others do not. She asked me to raise that point.

Volunteers can play a great role in shopping, helping in the garden or painting your front door. They can play a very big part and help people who are still living in their own home but can no longer manage these tasks. We want to see encouragement, particularly at this time when a lot of young people have no employment; it would be very good for them to have an occupation. Young people benefit quite a lot from helping older people who are in need. The noble Lord, Lord Lipsey, commented on the eye-watering squeeze on public money. I am sure that that is true and that we will all be faced with it in the years ahead because of the bank situation.

It is funny how life is often bittersweet. I got my peerage in 1981; in the same year, my daughter was diagnosed with multiple sclerosis. She has done wonders over these years and she has done a lot for other people. We have to realise that some disabled people do help others. In her case—and I suppose I should declare an interest—she is chairman of the trustees of the Gardening for Disabled Trust, which helps people of all ages. It helps many with learning difficulties, too, at any age, along with those who have advancing illness or age or disability. In the last year, it has helped people with chronic back and hip trouble; people who have visual, physical or mental disabilities or problems; people who need to reorganise their garden on grounds of illness or age; and residents in long-stay hospitals or nursing homes who share a garden, as they sometimes do. The charity gave out £31,000 in 2007, in 41 grants averaging about £650. Sarah herself is no longer able to work full-time, but she has to go and have exercise regularly. Multiple sclerosis is one of those conditions where you tend to go downhill. You need to keep your muscles toned up—but they are doing a great deal to help, and there is tremendous research going on.

On the subject of research, only last week we had a presentation on glaucoma in the House of Commons, in the Members' Dining Room. A wonderful professor from Moorfields explained that prevention is the thing, and that it was terribly important that older people have tests every year if they are showing any sort of inclination towards glaucoma. He went on to explain to me later that they are doing research that indicates that they will be able to develop such tissues that the body will be able to repair itself and that blindness might even be reversed in future. That would be a marvellous thing for people. As he explained, the moment you have lost your eyesight, you have lost so much in life—it is one of the most important things. He believes that if the research can solve the problem of how the body can heal itself and reinstate damaged tissue—and that is what he thinks they are working on and can eventually happen—all sorts of conditions that we cannot treat now could be reversible and, instead of people seeing their sight going generally downhill over so many years, they will find that they can reverse it.

Another essence of prevention is mobility. Bus passes are really enormously valuable to people. When I was chairman of social services in Westminster we first brought in free bus passes. When Ken Livingstone took over, he added the title "freedom pass" and implied that it was his own invention, when it had been going for many years before that. If we can keep people fit, mobile and interested in life, there is a hope that we can cut back on the enormous and growing demand for care, which at the moment is unfortunately projected by the University of Kent to increase by 95 per cent. Unless we can do more in prevention and reversal, we will have a terrible problem. Let us do what we can to stop that.

Photo of Lord Rix Lord Rix Crossbench 12:30 pm, 19th March 2009

My Lords, I, too, congratulate the noble Baroness, Lady Fookes, on instituting this debate, and apologise for the fact that, as I am 16 years above the average age of Members of this House, I am afraid that I do not have the facility of being able to speak so freely without notes.

Last Friday, there was the Second Reading of the Disabled Persons (Independent Living) Bill, which the Government are apparently not minded to support. Earlier last week, my noble friend Lady Boothroyd asked an Oral Question about learning disability and NHS accommodation. In the light of those two recent interventions and the fact that I am president of Mencap, I am sure that your Lordships will understand if I personalise a quote from Sir Joshua Reynolds: I will be obliged to imitate myself and repeat what I have before often repeated.

The Government quite rightly set themselves the target of closing old NHS campuses by 2010 so that all people with a learning disability could be supported to live in the community rather than be treated as patients with a medical condition. This transition has been absolutely welcome given the undignified conditions and low standards of care that existed in the majority of those campuses. However, for some of those people with complex needs, being transferred to an underresourced system could prove to be disastrous. Some of those remaining in NHS accommodation have received round-the-clock support of a decent standard. They may now be expected to perform totally unfamiliar daily tasks as local authorities become responsible for them but while new funds intended for those with complex needs are diverted to other areas of the underfunded social care system. Rather than promoting independence and inclusion, the transition can lead to an even more restricted and difficult lifestyle, or simply a transfer of dependence on to parents, who must become full-time carers.

As I said, my noble friend Lady Boothroyd raised this important point in her Oral Question last week. She highlighted the lack of any statutory duty on local authorities to provide 24-hour care. Even if it does not introduce such a duty, the Department of Health should at least play a far stronger role in overseeing this transfer. Sudden adjustments should not be made to people's care without inappropriate planning and support in place. In the same vein, responsibility to provide social care for disabled people in supported living is shifting from primary care trusts to local authorities. Again, that is a welcome policy, but the Department of Health must show stronger leadership to ensure that change is not too hasty and support is not reduced. It must cover the extra costs that arise. Otherwise, this well-meaning policy will continue to diminish quality of life for many of those who are supposed to benefit.

All this is against the backdrop of the Government's vision of equal citizenship for disabled people by 2025. The reality at present is not matching up to that vision. Likewise, I remain deeply concerned that government commitments in Valuing People Now will not be realised unless the funding is there. From day one, families feel that they must fight with their local authority to get even minimal support. Too often, support is limited and inconsistent, the processes to get that support are time-consuming and tiring, and information is inaccessible. In turn, local authorities explain that they simply do not have the budget to meet demands. It should be made clear in statute that entitlement to care must apply equally to all people who need support, whether due to impairments resulting from age, or whether due to a lifelong physical, sensory or learning disability. Entitlement should be based on an understanding of human rights that belongs to us all. We should be deeply ashamed that the Joint Committee on Human Rights reported that:

"For many adults with learning disabilities, the violation of their human rights is seen as a normal part of their everyday lives".

Support is growing for a national resource allocation system, which would operate with human rights as its basis, assessing each individual's needs in order to realise their rights and work out their entitlement accordingly, whether in the form of direct care provision or an individual budget which truly empowers that person. Such a system would avoid the current postcode lottery which penalises, for example, someone with a mild or moderate learning disability who unfortunately lives in one of the three-quarters of local authority areas where services are provided only for those with substantial or critical needs.

The consequences of failure to assess and keep up with demand are already being felt across the country. People who need support with most or even all aspects of daily life have seen their care reduced. Those requiring less care have seen it taken away altogether amid tightening eligibility criteria. Furthermore, if you need social care, some local authorities have started charging for services that were previously free.

Until the Education (Handicapped Children) Act 1970, children and adults with a learning disability were more or less excluded from society. Since that time, and especially in the past 15 years, a plethora of Acts, White Papers, Green Papers, regulations, targets, codes of practice and guidelines have poured forth from successive Governments applying to all disabled people, with spillage affecting the old and infirm. Some of this well-meaning legislation has indeed been efficacious, but much of it has struggled to have the desired effect through lack of resources and through myriad loopholes though which government, local government, social services and health authorities can sidestep their obligations. How often do we hear that pathetic excuse "lessons have been learned"? Were they learned by the carers in Cornwall who abused people with a learning disability? Were they learned by the health workers who allowed people with a learning disability to die as reported in Mencap's Death by Indifference, which will be the subject of an ombudsman's report next week, and is it not too late for lessons to be learned by the Mid Staffordshire NHS Foundation Trust?

"'That's the reason they're called lessons', the Gryphon remarked: 'because they lessen from day to day.'"

Unhappily they do not. Is it not time we closed the book on Alice in Wonderland and provided decent, dignified and discerning care for all older adults and all disabled people?

Photo of Baroness Morris of Yardley Baroness Morris of Yardley Labour 12:37 pm, 19th March 2009

My Lords, I, too, welcome this debate, which so far has been wide-ranging, covering not only important issues but issues on which key decisions are about to be made. I want to make a contribution on a narrow part of this issue by reporting to the House on some pioneering work taking place in the Derbyshire Dales. I will particularly pick up on one of the points made by the noble Baroness, Lady Fookes.

I declare an interest as a patron of the charity First Taste, which was set up in 1997 by a group of volunteers who had reached a stage in their life where elder relatives were in care. They were struck by the apparent lack of engagement and activity evident in some elderly people and in some of the care homes. The charity's mission is to celebrate and enhance the quality of life for older people in nursing, residential and day care settings in the Derbyshire Dales, by encouraging participation and involvement in the arts. In short, it brings access to the arts and lifelong learning into residential and care settings.

Of course, there are many care settings throughout the country where residents are encouraged to join in creative activities. I am talking about something very different; First Taste has created something of a completely different order. Last year, in Bakewell, Matlock and the surrounding area, 301 tutorial workshops delivered carefully planned programmes in 19 nursing and residential care establishments and nine day centres. They were delivered by 21 tutors, each qualified and trained in their subject and coming mainly from the further education and community arts sectors. The programme is delivered jointly with care staff. It is a requirement in the homes involved that their care staff should join in the delivery so that the tutors can follow up the activities between sessions.

The charity's flagship programme is called TOPIC—tutoring older people in care—and delivers a structured programme including art, music and digital photography. It has four objectives: to encourage care staff to develop new skills; to strengthen the mental and physical health of residents and to help them to develop new skills; to give residents and staff the opportunity to re-engage with learning; and to introduce new technologies to currently excluded groups.

As in all effective learning, the progress made by residents is recorded and monitored against the objectives of the programme. I am used to seeing profiles of learning by seven and 17 year-olds, but to see a profile of learning by a 90-odd year-old was something that I had not experienced before. The skills learnt by the care staff are recorded as well and can be used by them towards further formal qualifications. They certainly become skills that they can transfer to jobs elsewhere in the sector.

The results are impressive. External valuation of the programme commented that nowhere else in the United Kingdom are similar packages of consistent, regular learning opportunities offered to older people in care. The assessments of those involved are equally positive. One care worker said that it had given her a new respect for residents; she knew more about them and had more to talk to them about. A care home manager talked about it building trust between staff and residents. However, a particularly important measure of success and impact is that, in one home, an approximate reduction of a third in medication such as antidepressants and sleeping tablets was indicated.

This is the story of a group of people under the inspired leadership of Shirley Davison and Iris Wagstaffe who did something to solve a problem that they saw in their community. Like all charities, they struggle from year to year to raise the funds, but they built a locally owned and designed organisation that really makes a difference. In truth, though, we know that what they are addressing is a problem that is not peculiar to the Derbyshire Dales but can be found throughout the country. Too many elderly people believe that life has not much left to offer them and feel excluded from the activities that many other people take for granted.

First Taste shows that, sometimes, we set our sights too low. We reserve our ambitions for those who are younger or fitter. We talk about universal access to the arts or say that we are committed to lifelong learning but, when we say that, do we include the elderly and frail? First Taste students range from their early 70s to 101, proof that, at every stage of life, we can benefit from learning and creativity.

First Taste has responded to its community, but its ambition—and it should be ours, too—is to allow others to learn from its success. Of course we need to get the basics right in the care of the elderly and disabled, but we must be sure that we understand the breadth of what basic need is. The Government recognise the value of this sort of work. At First Taste, we are more than grateful for the interest and support shown by the lifelong learning division of DIUS, which, fortunately for us, happens to be based in Sheffield.

I ask the Minister what action she and her department can take to establish access to arts and learning as an essential and required part of care for the elderly. What does the department know about what is already happening in this field? Has it modelled best practice? How robustly is this aspect of care monitored by the inspection framework? What support is there for care homes that want to develop this sort of activity? What resource is allocated?

In the 21st century, our expectations for elderly and frail people should be higher than ever. The problems that have been identified by First Taste, and their solutions, could and should become part of a national entitlement. Without support from the centre, and from the Government in Westminster, that will not happen. However, if we could deliver this, we would make a really positive contribution to discharging the responsibility and debt that we owe elderly and frail people.

Photo of Viscount Tenby Viscount Tenby Crossbench 12:44 pm, 19th March 2009

My Lords, I thank the noble Baroness for introducing a debate of such great importance and for doing so in a speech of such fluency and interest. I will confine myself to speaking about those with long-term learning disabilities and, in doing so, declare my interests as a parent of a daughter with that condition and chairman of the trustees of a residential home for women with learning disabilities in Hampshire.

The Government are to be congratulated on recently producing the publication Valuing People Now and the proposals contained in it. It sets out ambitious plans for ensuring the quality and enrichment of life for all those with a learning disability and provides structured steps to achieve these objectives over the next few years. I welcome this commitment.

At this stage, I make only two comments. First, achieving those objectives depends a great deal on successful interaction between a whole range of bodies, from regional offices and local authorities to strategic health authorities and PCTs, and such interaction in recent times and in other fields has not always proved to be—how can I put it?—entirely fruitful. Secondly, there is in the proposals a welcome commitment to the production of checks such as those provided by annual reports and other publications. However, these are of course only worth while as long as effective remedial action is taken in respect of weaknesses in the system identified by such publications.

Before leaving this point, I ask the Minister when the national learning disability board, from which basically everything will flow, is to be set up. There was an indication in Valuing People Now that the national director would be appointed in February. Has this in fact happened and, if not, when is it anticipated that the director and board will be in place?

Much needs to be done in this important area at a time when, as the noble Lord, Lord Lipsey, mentioned, there is likely to be financial famine. Although the Government are investing hundreds of millions of pounds in transforming commissioning, nothing, so far as I am aware, has been set aside to transform provision that has correctly been identified as inefficient and out of date.

Perhaps the House will allow me to divert from the general to the particular for a moment. The home with which I am associated fits the aforementioned description. We are accordingly seeking to create a modern facility to meet the new standards while promoting the independence of our residents and enriching their lives. Although redevelopment may be viewed as costly, in many cases inefficiency is more so. Yet this dilemma is frequently ignored because it is a big theme with long-distance implications, which requires vision, co-operation and boldness in its solution. If the problem is not dealt with, however, and sooner rather than later, there will eventually be a mismatch between commissioner and provider, with all the heartache and frustration that that entails.

On the more general front of financial provision, the Centre for Disability Research has estimated that the annual increase in new learning disability clients will be between 3.2 and 5.5 per cent, against the Department of Health's assumption of a rise of only 1 per cent. The greater increase is due to a number of factors, ranging from greater longevity for those with profound learning disability to an increase in the number of babies born with Down's syndrome due to a growing number of older mothers. However, such a discrepancy in the estimates surely calls for urgent government research and for the true state of play to be established. Can the Minister give an assurance that such a study will be undertaken as a matter of urgency?

The fact is that there is currently a substantial gap between demand and what is available; again, this will become even more pronounced in the months and years ahead. Day services are being cut, as I know through personal experience. Even more alarmingly, 73 per cent of councils now offer support only to those deemed to have substantial needs. This, of course, stems from councils currently being under extreme financial pressure. It has been estimated that, even with less expenditure and reduced support, three-quarters had overspent their learning disability budget by 2.7 per cent in 2006-07—that was the situation then, let alone now. The previous national director for learning disability has stated that an additional £1 million for each English local authority would be needed every year for the next 10 years to provide good-quality social care, adding up to a whopping £1.5 billion over current expenditure levels. The mind boggles.

I applaud the work of CSCI and many local authorities, particularly my own. I also give three cheers for the departure from the uniformity of old. Let us rejoice at self-advocacy and people-centred planning and at stretching the horizons and quality of life for all those in social care. Amidst all the justifiable enthusiasm for independence and self-enhancement, however, one must never forget that there are many who, sadly, may be unable to look after themselves completely—a fact of life of which the parents and carers are only too well aware. This experience and knowledge must never be ignored or dismissed lightly by the authorities. In giving thanks, I reserve my special tribute to the many hundreds of dedicated social workers who labour with love and energy to make life better for those in need. They really deserve such a tribute. Whatever financial stringencies confront us in the years ahead, let it never be said that we neglected by one iota the well-being and human rights of our vulnerable communities.

Photo of Lord Sutherland of Houndwood Lord Sutherland of Houndwood Crossbench 12:51 pm, 19th March 2009

My Lords, I add my thanks to those given to the noble Baroness, Lady Fookes, for securing time to debate these very important questions. I shall confine my remarks to the long-term care of older people. The disability case was so well put by my noble friends Lord Rix and Lord Tenby that I shall focus on the older section of the community. I declare two interests: I am president of Alzheimer Scotland, where I see marvellous things being done on a voluntary basis by those who care, by those who need care who provide support for others and by those members of the wider community who have become involved in their excellent work. I am also an adviser to Scottish Care and to English Community Care Association, organisations devoted to improving the professionalism and quality of care homes in our community.

Where are we now? Several years have passed since 1996-97, when the Labour Party assessed the big issues in the light of the forthcoming election and included as a very high priority in its manifesto the need to address long-term care of the elderly. Reference has been made to the previous Prime Minister's attitude to this issue. A Royal Commission was established, but here we are, in 2009, essentially facing the same questions. That is a scandal and a disgrace. The Government have had plenty of advice. They did not like the Royal Commission's advice. The Joseph Rowntree Foundation has produced two reports and the IPPR has produced a report, as have the King's Fund, Derek Wanless and others. They have had plenty of advice. What is lacking is the will to create a policy that will drive direction. My basic question to the Minister has to be, when will we have a policy? Let it not be after the next election, as a further two years would be wasted, with their attendant misery.

A key principle enunciated by the Royal Commission is the need to have equity, which I do not think anyone doubts. One could argue about what this means. I pin my colours to the mast when I say that it means spreading the risk across the whole community. As has been said, you may have liver failure, lung cancer or a broken arm, but care will be provided by the state, whereas if you have dementia, a form of brain disease, you are in a very different position indeed. That is appalling. If we cannot afford to cover all these conditions, we should at least ensure that the risk is spread so that there is equity between various forms of illness. As some noble Lords have said in their excellent speeches, a single pattern of assessment with a single common set of criteria of need that operates without postcode intervention and local authority change is required. The lack of such an assessment causes much agony and annoyance across England. It does not happen in Wales, and we should ask why. It is not that there is more money or a different policy, rather that they seem to be able to make it work. It does not happen in Northern Ireland, and I shall come back to Scotland in a moment. A single pattern of assessment and definition of needs, accompanied by a single point of commissioning, is required—what my noble friend Lady Greengross referred to as the one-stop shop. Those in need, carers or those who need care desperately call for a single point of contact, a single reference, where they can be dealt with as whole human beings, not as a series of bureaucratic items spread round various Civil Service departments. Behind that lies the need for a single budget, which was recommended by the Royal Commission more than 10 years ago.

The local authorities that are most successful in this regard in these difficult times are those that have managed to bring together health provision and social care provision, sometimes through a single chief executive appointment. This has happened at key points throughout the country. It works well, everyone benefits and money is spent more efficiently. Will the Government ensure that this best practice is spread more widely?

The range of funds available can cause uncertainty for those in need of care. No one attempts to co-ordinate health service funds, social care funds, attendance allowance, disability allowance and housing adaptation budgets. I challenge the Audit Commission to determine whether we are getting value for money in that regard. Huge sums are involved but often different criteria are applied to them, which means that they do not constitute best value for the community or the individual.

The noble Lord, Lord Lipsey, used two mischievous —or worse—expressions in regard to funding in Scotland. He said that Scotland had runaway costs and severe rationing. On the best interpretation, that is the product of irresponsible headlines. I will not tell noble Lords the worst interpretation as it would be unparliamentary to do so. However, the provision of care in all its forms for older people in Scotland costs £2.5 billion, of which personal and social care accounts for £225 million—that is less than a tenth. Of that, £30 million in attendance allowance is saved, so you can knock that off. The difference between Welsh policy and Scottish policy amounts to 14 per cent of total costs paid from the private sector. That means that the gap as regards what is not provided in Wales but is provided in Scotland is about £40 million. However, there is a £30 million saving in attendance allowance alone. What happens to the attendance allowance money? It stays with the Department for Work and Pensions and does not go back into care. I am being signalled that I have spoken for nearly seven minutes. I end with the single message that we should look at the numbers and find out what the net cost is, not the headline cost. I hope that the Government will soon define their policy.

Photo of Lord Kirkwood of Kirkhope Lord Kirkwood of Kirkhope Spokesperson for Work and Pensions 12:59 pm, 19th March 2009

My Lords, this has been a fascinating debate. We have heard 10 excellent speeches. I, too, congratulate the noble Baroness, Lady Fookes, on initiating the debate. Its timing is absolutely perfect. In those 10 speeches, we have heard about families who have been very significantly affected by physical or mental impairment. The noble Baroness, Lady Gardner of Parkes, made an emotional and powerful speech which demonstrated that no matter how strong a family is, the fickle finger of fate can strike unexpectedly. This is not an argument just about people who are in financial adversity; it can hit anyone.

If you are looking for another example, look at what the author Terry Pratchett has been able to do in demonstrating his courage. He is so successful and established, and his bravery in confronting his condition is an example and a signal for many that there are planning and practical things that can and should be done. I hope that this debate will encourage people to think about these kinds of things.

More than anything else, I add my voice to those who say that the delay that the Government are now engaged in is completely unconscionable. The noble Lord, Lord Sutherland, used the word "scandalous". Many of us studied the valuable piece of work that the noble Lords, Lord Lipsey and Lord Sutherland, did 10 years ago. For me, it was the appendices and the volume of evidence that the Royal Commission put into the public domain that convinced me beyond peradventure 10 years ago that this was an unanswerable case and something had to be done. There were high expectations that something would be done, and those expectations have been dashed.

That is not a cost-free problem. In those 10 years, if people had had a signal about the direction of travel that the Government were going in, they could have made practical dispositions and taken steps to try to configure their lives during their working life by saving contributions, taking out insurance policies during their working life and building up circumstances to protect themselves for longevity and long-term care. No one has been able to make any sensible dispositions, because we do not know what the circumstances are going to be. It is absolutely imperative. It is not the Minister's fault, because she is perfect in every way as a Minister. The Government have got a case to answer given the lack of any real direction of travel.

Reports have been published not just by the Royal Commission but by the King's Fund, the Wanless commission and the Joseph Rowntree Foundation. There is no shortage of things that can and should be done. The noble Lord, Lord Lipsey, is right to say that the resources that we are looking for will be harder and harder to find. That is not a reason for doing nothing. I do not think that he was saying that; I think that he was saying that we have to be practical and realistic. Everyone is prepared to be practical and realistic, but as a nation we have to understand that the total wealth devoted to this subject will have to increase, because we are all living longer. One in four people born in the United Kingdom today will live to be 100. Even if we do nothing, it is going to cost us more.

Of course, the funds have to be found from somewhere, and we cannot look to the Government to do everything, because taxation has a part to play. No one is saying that this all must be paid for out of general taxation. People are looking for individuals to be encouraged to make working-age contributions, and they even are looking for families who can to make positive contributions, either out of personal pensions, state pensions, liquid assets or heritable assets. No one thinks that this is going to be easy, and everyone wants to contribute to sharing some of the costs.

The point made by the noble Lord, Lord Sutherland, about sharing risks is nearly as important as the costs; it is an essential part of this deal. If you can share the risks across the generations, across age groups and across households, you get a much better deal for everyone. These things are obvious, and they are staring the Government directly in the face. It is puzzling why it has taken so long to get a Green Paper, for heaven's sake. The point was made by the noble Baroness, Lady Fookes, at the beginning of the debate. That suggests to me that there is no prospect of legislation this side of an election. We may have a new Government after the next election, for all I know. You never know what might happen. That Government might say that they need a Royal Commission to start again. The situation is urgent. People may say that long-term care is a long-term policy, and it is, but we are running out of time to enable people to make proper dispositions for themselves and their families and in the future to protect themselves against some of these devastating things that can hit families.

The demographic trends are known and have been mentioned. I wonder whether people understand just how dire some of the resource problems and care problems will begin to look. Looking at the demographics, by 2050 there will be twice as many people over the age of 85. That has really compelling policy implications, not just in health, care and transport but other things. We need to understand the extent of the problem. I was very encouraged by the speech made by the noble Baroness, Lady Morris of Yardley. We are far too unambitious about what we can do with people who are reaching the end of their natural life.

As someone who spends quite a lot of time in the House of Commons gymnasium, I can tell you that its locker room is an interesting place to be; you learn all sorts of things in strange circumstances there. I learnt from the professional assistants there that every one of us can be a relatively fitter 70 year-old than we were at 60. You can target improvements in VO2, health and that kind of thing even at the end of your natural life.

We need to introduce arts, photography and music and to involve the community instead of doing this care thing in isolation as we seem to be doing. We are heading towards personalisation. I can understand the value of that, but I am fearful that that just means that people are thinking that everyone can do it for themselves. There is a much wider community interest in this subject. We must not lose that in the pursuit of personalisation of care, which is worth having for itself.

We also have to consider that the context in which this debate is taking place has changed from 10 years ago. The noble Baroness, Lady Greengross, who made an excellent speech, with all of which I concur, made the point about human rights now, rightly, being a much bigger part of the equation. Look at what the Government are doing with the Equality Bill, which is being delayed. It looks as if the age discrimination legislation, which the Government are right to advance, is also going to be delayed. Both of these things are intrinsically important to get the dignity and respect agenda properly implemented and enforced. Human rights and dignity, to which we all aspire, are something that the Government need to look to in making their Green Paper proposals.

Noble Lords mentioned quality, which is very important I can hand on to the Minister for her Easter reading the book by JM Coetzee Slow Man. Coetzee is a very dark author, but he is a wonderful writer, and he describes the circumstances faced by someone who loses a leg in old age, whom he describes as eventually being "unstrung" by the experience. It is a very interesting book, because what he describes more than anything else is the value of the quality of the care rather than the clinical aspect of the package. Some colleagues mentioned that earlier. Sympathy and companionship are nearly as important as the clinical standards that are produced in the package. In the book, he is really saying that you need to care as well as to promote care when you are trying to help people in these dire circumstances.

Photo of Earl Howe Earl Howe Shadow Minister, Health 1:09 pm, 19th March 2009

My Lords, I congratulate my noble friend Lady Fookes on a masterly opening speech in which she very succinctly focused our minds on the importance and the difficulty of this subject. As she said, and as other speakers have implied, this debate foreshadows the forthcoming Green Paper on adult social care and lays before the Government the range of questions which we expect that document to begin to answer.

They are not easy questions. We start from a rather unusual position for a policy review. It is not often that the Government explicitly states of a publicly funded service that it is not sustainable; but that is what the consultation document, Care Support Independence openly acknowledged by citing changing demographics and changing societal expectations. It made the point that those expectations, even now, are often not being met. The document speaks of the need for a,

"radical rethink of how we pay for and deliver care and support services", and,

"a new settlement between individuals, families and the Government".

That may not be quite the right way to put it, and I will come back to that, but the point is that the Government are telling us that the review in prospect is to be no ordinary one.

The background to all this, as noble Lords have said, is that the proportion of older people in our population is growing. You sometimes hear people say that this will not impact unduly on the health and social care budget, because even if people are getting older, they are at the same time freer of illness and disability. Perhaps they are thinking of the noble Lord, Lord Rix, when they say this. Statistically, alas, that is not accurate. Wanless reported that the number of older people suffering from some sort of disability is growing nearly 10 per cent faster than the number of those without a disability. In 20 years, at least 1.7 million more people will have a need for care and support of some kind than at present.

What should we be aspiring to? The Government have set out their vision of how a decent care and support system in the 21st century ought to look. The key words are ones we have heard today: promoting independence and choice, high quality care, targeting support where it is most needed and affordability. It is the last of these where the rub lies. There is a funding cake but the cake is not big enough. We know that, because, as the noble Viscount, Lord Tenby, and others told us, rationing is already happening at a local level. Eligibility criteria are being constantly tightened.

Where should the extra money come from? One answer that the Government are looking at is for some sort of compulsory savings scheme to cover the cost of care. Some very persuasive voices out there are saying that this is the only way to go; but to many people, compulsory saving may sound suspiciously like a form of extra taxation from which they may never benefit. Certainly we need to look at such a system and see how it might work; but compulsory saving will never be practicable for those on low incomes or, crucially, for those with learning disabilities or who are seriously disabled at a young age. When we look at caring for young, long-term disabled people, I am not averse to the idea of a quite separate structure of public funding, recognising that many of these individuals will not have the chance to acquire financial means of their own.

The injustice that is most often talked about in the current system is that while the prudent and thrifty are penalised in old age by being made to sell their houses to pay for care, the feckless poor have everything paid for them out of the public purse. So far, in 12 years, the Government have said and done almost nothing to resolve this issue, even though Tony Blair highlighted it in 1997 as an injustice. I hope the Green Paper faces the issue head on, either by coming up with a solution—as, I may say, my own party did at the last election—or by admitting that, for now and for the times we live in, it is too difficult a nut to crack. The issue cannot be ducked.

The other injustice in the system, the postcode lottery, was mentioned by the noble Lord, Lord Rix. If we think there is a postcode lottery in the NHS, there is an equally blatant one in adult social care, which is why the consultation paper floats the idea of moving away from the current system, whereby eligibility for care is decided by local authorities, to a nationally based system. Personally, I am drawn to that idea. As Help the Aged and others have pointed out, the usual argument about local decision-making being better because it can respond more easily to local need is in practice a fiction, because most councils can do little more than provide the essentials to those whose needs are the most serious.

The current debate around social care is not just about the funding gap; it is also about what might be termed the care gap. CSCI have estimated that 6,000 older people in England with high-level support needs are receiving no social services and no informal care, 275,000 older people with less intensive needs also receive no care, and 450,000 people receive some measure of support from family and friends, but their full care needs are unmet. Those are disturbingly large figures, but if we then look at the demographic curve over the next 20 years and the projected ratio of workers to retired people, we see another gap emerging between the number of people needing care and the number who are in a position to deliver it. Some 80 per cent of adults of working age are in some form of employment; the available cohort of women carers is reducing. Like it or not, informal care looks set to be a major element of the care equation for the indefinite future. The London School of Economics has estimated that demand for informal care will actually outstrip supply by 2017. By 2041 there will be a shortfall of 250,000 intense carers—people who give care for more than 20 hours a week. In other words, if we do nothing, a quarter of a million fewer disabled people will receive informal care in 2041 than at the moment. How are we going to bridge that gap?

The answer suggested by various think tanks and informed academics is that we need radically to rethink our views about family and community responsibilities. We cannot look simply to families. Increasingly they are becoming dispersed and fragmented. I am one of those who believe that we need to look beyond the narrow framework of family at neighbourhoods and voluntary groups. In doing so, a fundamental question is to be addressed about the balance of responsibility between society in its various guises and the individual. The respective roles of government, the community, the family and the individual need to be better defined if we are to reach a consensus on what is fair and practicable for the future. If we believe that the wider community has a potential role in delivering care and support, we need to do some hard thinking about how best those forces might be mobilised, and by whom. The Government have an obvious role in facilitating such a process, and so, I believe, does the Church. What would such facilitation look like?

Unfortunately the clock is ticking and there is no time for me to expand at length on that interesting theme, but the Minister may care to read some stimulating ideas coming out under the banner of, among others, the Joseph Rowntree Foundation. Like my noble friend, I believe that we need to focus public policy much more closely on the role of informal carers and how we might improve their quality of life. Peter Beresford of Brunel University pointed out the irony whereby on the one hand we heap praise on carers for their magnificent and important work, but at the same time we allow their terms and conditions of work to be comparable to, and in many cases worse than, those of supermarket shelf stackers. It is a contradictory attitude. Paid carers are poorly remunerated and poorly trained, and the result is inevitable—high turnover and poor levels of recruitment. Informal carers are, if we are candid, exploited by society as a resource, despite the many things that the Government, to their credit, have done to improve their lot. Good-quality caring requires ability, empathy, warmth and the ability to listen, together with all the things to which the noble Lord, Lord Kirkwood, referred.

I hope that we will have a chance to come back to these issues after the Green Paper is published. I look forward to reading it as a basis for future consensus but, equally, I look forward to what the Minister is about to say in response to the excellent speeches that we have heard today.

Photo of Baroness Thornton Baroness Thornton Government Whip, Baroness in Waiting (HM Household) (Whip) 1:20 pm, 19th March 2009

My Lords, I congratulate the noble Baroness, Lady Fookes, on her choice of subject and on the absolutely outstanding way in which she introduced it. There can be few issues more important or wide-ranging than the care of older and disabled people. Today, the noble Baroness has provided an opportunity for this House to debate the crucial questions of how we care for and support some of the most vulnerable members of our society.

I shall not be able to take advantage of the full time allocated to me because I wish to give the noble Baroness, Lady Fookes, time to respond to this wide-ranging debate. Therefore, if I do not reach any specific questions that noble Lords have put to me, I promise to write to them.

Demographic change is, of course, one of the biggest challenges that this country faces, as was pointed out by the noble Baroness, Lady Fookes, and others. We live in an ageing society but it is important to remind ourselves that older people are healthier, more active and more aspiring than before and that life expectancy has improved. Today's 65 year-old man can expect to live until he is 81 and a woman can expect to live to 84. Older people want to enjoy good health and remain independent for as long as possible. As people get older, remaining independent often depends on health and social care being effective enough to support them. In many aspects of care for older people, the NHS and social care in this country lead the world, thanks to the expertise and dedication of the staff.

I thank the noble Lord, Lord Kirkwood, for branding me as something like the Mary Poppins of the Government, but I take issue with him on one point. We are very much aware that these are enormous challenges which have to be resolved over a period of time. There is no silver bullet here. However, I think it is fair to say that the current health and social care system has changed substantially from the one that the Government inherited in 1997. I hope that we now have a system that is more responsive, more flexible, more expansive and more empathetic.

Concerns about the care of older people are not new. This Government introduced the first National Service Framework for Older People, the first ever strategy aimed at ensuring high-quality, integrated health and social care services. Since the national service framework was published, there has been steady progress in eliminating age discrimination and improving community health. We have also taken action to extend, for example, access to preventive services, such as flu vaccinations, blood pressure control and breast cancer screening. Older people, in particular, are reaping the rewards of this extra investment.

The next-stage review of the NHS by my noble friend Lord Darzi, published in June 2008, presents a vision of the NHS that consistently delivers the highest quality of care to patients and empowers staff to offer care that is personal, effective and safe. High Quality Care for All, the final report of the next-stage review, sets out the national framework that will enable and support the delivery of the ambitious visions for health and social care published by strategic health authorities last year.

We are also facing unprecedented challenges within social care. An ageing population, higher expectations about what services should be delivered and technological changes mean that a radical rethink is required of the care and support system to meet long-term pressures. That is why, later in the spring, the Government will publish a Green Paper, referred to by many noble Lords, on the reform of the care and support system. This will look at options for developing a sustainable care and support system and at whether it will be possible to develop a new system for all adults and not only for people over 65. The noble Earl correctly outlined the challenges with his usual eloquence. I take on board his reading recommendations, together with those of other noble Lords.

Noble Lords should be, and I believe are, aware that a great deal of work has gone into developing the Green Paper. The public engagement process that ran throughout 2008 enabled many thousands of individuals, as well as organisations, to inform its development. They included the NHS Confederation, the Local Government Association, the TUC, Carers UK, In Control, Age Concern, Help the Aged, Mencap, the Disability Alliance, the Learning Disability Coalition, the National Centre for Independent Living, the Royal College of Nursing, the Allied Health Professions Federation, Crossroads, the Equality and Human Rights Commission, CSCI and so on. Therefore, a great deal of thought has gone into the preparation of the Green Paper. Noble Lords are correct that the Green Paper will not offer a definitive answer to the challenges that we face, but it will give staff, stakeholders and the public the chance to shape the solutions that we take forward. Again, the noble Earl was correct in saying that this is a very serious challenge.

Although the Green Paper will be a major step forward, it is only part of the journey that we are undertaking in transforming care and support. My noble friend Lord Lipsey, with his long-standing expertise, outlined many of the challenges in, as he put it, the landscape of reality that we all face. I also agree with my noble friend and the noble Baroness, Lady Thomas, about the importance of good-quality, accurate and independent advice and information for those facing the challenges of old age.

Noble Lords will be aware that the Government launched the national dementia strategy last month, as was mentioned by the noble Baronesses, Lady Greengross and Lady Gardner. We hope that this landmark document will set out initiatives to increase awareness of dementia, ensure early diagnosis and treatment, and radically improve the quality of care that people with the condition receive. We are also investing in research into dementia and related neurological conditions.

I hope that, as a Government, we are taking steps to deliver better services for older people. In May 2008, my colleague in another place announced that a prevention package for older people would be developed to address the challenge of providing more and better preventive care. Therefore, we are taking forward core prevention services, such as sight tests, and making the case for commissioners to improve services for foot care, falls and fractures, together with all the important preventive measures that can make such a difference to the lives of the elderly.

Through the carers strategy, we have put a deserved spotlight on the unsung heroes in our society, movingly explained to us by the noble Baronesses, Lady Gardner and Lady Fookes, and others. I refer to the 6 million carers who make an enormous contribution to their local communities and who should get all the support they need to continue this important work. We launched the carers strategy in June 2008. The aim of its key components is to ensure that carers have increased choice and control, and we are investing £255 million to ensure that the new strategy is implemented. That includes £150 million over two years for people to take breaks from caring—a point rightly highlighted by the noble Baroness, Lady Fookes.

Before moving on, I shall refer quickly to a few other points that were raised concerning older people. The noble Baroness, Lady Thomas, made a very interesting contribution about the Hampshire commission's report, which I should like to read. It seems to take a very practical look at the challenges that people face, and it sounds like a document that deserves wider appreciation.

The noble Baronesses, Lady Fookes and Lady Thomas, and the noble Earl, Lord Howe, raised the issue of people selling their homes. In 2001, we ended the unfair system whereby people in care homes paid for their nursing costs by selling their home, and introduced deferred payments to help people to avoid having to sell against their wishes. However, charging for care is not new; people have always had to pay for their social care, but there is obviously a continuing debate about that.

The noble Baroness, Lady Fookes, raised the issue of personalisation and giving people choice and control over their social care needs. Putting People First, when it was launched over a year ago, earmarked £520 million in total to develop personalised social care, £85 million of which has already gone into the system and £195 million is coming on stream in the next year. It is central to the transformation of giving individuals a personal budget and understanding how it should be met, but I agree that it has to be a supported choice.

So far I have focused on the needs of older people but we should not forget the challenges we face concerning all adults and disabled people who have the right to expect quality of citizenship, independence and a full life, as mentioned by the noble Lord, Lord Rix, the noble Baroness, Lady Emerton and the noble Earl, Lord Howe. Last year the Government launched the independent living strategy which aims to give disabled people greater choice and control over the support that they need to go about their daily lives and how it is provided. We are making progress in delivering this strategy and we are committed to measuring it and reporting on it annually. The principles of control, choice and, particularly, empowerment are fundamental to Putting People First. This concordat sets out a cross-sector commitment to personalising public services and the need for the state to empower citizens to shape their own lives and the services they receive. It supports the commitment to independent living for all adults and is unique in establishing a collaborative approach between central and local government, the sector's professional leadership, providers and the regulator.

User-led organisations which are controlled by disabled people have a key role to play in delivering personalisation and independent living. Indeed, following this debate I am going to a workshop about exactly that. We are investing more than £1.6 million over the next two years to support the development of up to 25 learning sites around the country to develop best practice and share experience. We will announce very shortly the sites that will receive the funding.

The new equality Bill will also benefit the most vulnerable among us and create a more equal society. The Bill will streamline the law, distilling nine pieces of legislation into a single Act. I am not aware of any delay on its production at the moment. I was at an equality Bill meeting yesterday. The existing disability duty puts a responsibility on public authorities to, among other things, eliminate discrimination and harassment, promote equality of opportunity, promote positive attitudes and encourage participation of disabled people in public life. We plan to retain all those principles for disabled people in the new duty, and extend them to other strands. We have some good existing legislation that protects against discrimination with regard to race, religion, sexual orientation while at work, but there are other areas where this protection is missing. Through the equality Bill we have the chance to build on that legislation.

The noble Baroness, Lady Greengross, spoke movingly about the importance of tailored care packages and the need for humanity and kindness to be at the heart of all our work. She is absolutely correct about that.

I shall now respond to some of the comments made on the issues. I promised the noble Lord, Lord Rix, that I would try to answer his points about the campus and care for learning-disabled people. The responses to the Valuing People consultation published in December 2007 showed a common theme from respondents across the stakeholder groups that what was needed was choice in housing options. For some people that meant choice over where a person lived and for others it meant retaining the kind of residential service options alongside tenancies and home ownerships. Experience shows that a number of plans might indicate a preference for congregate living and we need to recognise that. I believe that it is a transitional problem. To support the programme to close NHS campus-style services, a £96 million revenue grant has been made available over the next three years, increasing to £175 million in the coming period.

I am afraid that I cannot address all the questions that were raised, but I want to end on an optimistic note. The noble Baroness, Lady Gardner, reminded us that we should be optimistic, especially when she talked about the research and the hope for medical advances in these areas. She was absolutely right. The noble Baroness, Lady Emerton, reminded us of the importance of leadership and nursing practice in the care of elderly and disabled people. My noble friend Lady Morris reminded us through her explanation about First Taste that this is not just about caring for bodies but also about caring for people's souls. The noble Viscount, Lord Tenby, also reminded us that we need to move forward optimistically.

We might anticipate that a debate led by the noble Baroness, Lady Fookes, and with the participation of distinguished colleagues from around the House, would be of the highest quality, and indeed it was. I thank noble Lords once again for their excellent contributions today.

Photo of Baroness Fookes Baroness Fookes Deputy Chairman of Committees, Deputy Speaker (Lords) 1:36 pm, 19th March 2009

My Lords, from the bottom of my heart I thank all those who have contributed to this fascinating debate today. Each one has brought a degree of expertise and personal experience that has been truly illuminating in this very important subject. While all those who spoke seemed to suggest that we needed a radical look at the whole policy for the future, perhaps inevitably the Minister, in the absence of the Green Paper, could not give us that radical outlook. From my point of view I still feel that it is jam tomorrow but not jam today. On that note, I again thank all who contributed to the debate and seek leave to withdraw the Motion.

Motion withdrawn.