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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

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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.

12.23 pm

Baroness Gardner of Parkes: 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.



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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

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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.

12.30 pm

Lord Rix: 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.



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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?



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“‘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?

12.37 pm

Baroness Morris of Yardley: 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.



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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.



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12.44 pm

Viscount Tenby: 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

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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?


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