Health Bill [HL]

We now come to a series of groups of amendments which are all about a crucial part of the Bill; namely the provisions to enable direct payments to be made in respect of healthcare. Many of those amendments stand in my name, and I offer no apology for having tabled a great many detailed amendments on this subject. I promise that I will not unduly detain the Committee, because there are much more exciting debates awaiting us down the line. However, this is a very major policy change, and in this Committee we have perhaps a unique opportunity to ask the Government some far-reaching and searching questions about a policy that potentially has enormous consequences for individual patients and for providers of healthcare services. On Second Reading, the noble Baroness, Lady Campbell, captured the attention of noble Lords with her story, and I am glad that she did. She gave an introduction to the subject that was informative and engaging. I want to start today with another story. At the end of last week, I was sitting in my office chatting to a colleague about the fact that we were going to be having this discussion this afternoon. Someone who occasionally works in my office heard what we were saying and asked, "Are you talking about direct payments?". When we said that we were, she said, "Let me tell you this. We have two lots of direct payments. We have direct payments for my brother, who has learning disabilities, and that is great. I use those to have respite care for him and for me. When it gets to a point when neither one of us can cope any more, he goes away and he has some respite, and so do we, and that enables the family to restore its batteries and to carry on. I also have a direct payment for my mother, who is elderly and who has a number of different health problems. It is great, because it enables us to get a carer to come in and be with her at the times when I cannot be there. Because we get a direct payment, we can use a private carer. We used to have to use an agency, but that was no use, because the agency carer could not come when we needed them, and now, because we have a direct payment, we can have someone at the times when she needs them. It is brilliant, because it enables me to go on working. But it is difficult, because when the local authority comes to see you, it tells you about the minutes—not the hours—that you’re entitled to have. However, it doesn’t tell you anything about insurance or national insurance. It doesn’t tell you anything about what to do if it does not work out with the person whom you’re working with. It doesn’t tell you whether it’s up to you as the employer to deal with it and, if you are, how you do that. There was an organisation that helped us a lot, but unfortunately it’s packed in and there’s nothing now". She went on to say, "In many ways, direct payments are great. They help you to do things that you couldn’t otherwise do. But I am a very strong and clued-up person and I know people who understand about all this, and I find managing this a struggle. My brother and my mother could not manage this on their own, and God help anybody who doesn’t have the help to get them through this, because—believe you me—it’s a nightmare". That was her story, which is no more or less valid than that of the noble Baroness, Lady Campbell; it is just different. I mention it today because I think that it will help some Members of the Committee to understand why they have in front of them what appear to be an awful lot of detailed, technical and niggling little amendments. They are not; they seek to probe how this policy will work in practice in healthcare. Most of the amendments are informed by the experience of and research conducted in social care. I remind the Committee of the genesis of direct payments. The 1993 community care Act gave care managers responsibility for purchasing packages of care for individuals who needed them. The Community Care (Direct Payments) Act 1996 gave local authorities the power to make cash payments in lieu of services to adults. Section 57 of the Health and Social Care Act 2001 made it mandatory to offer direct payments to eligible individuals; I make it clear to the Committee that, since 2000, eligible people have included those over 65 and carers for and parents of disabled children and young people, as well as people with learning disabilities and adults with physical disabilities. There has been a growing sense that the way in which social care has been provided traditionally needs to be changed. That is not new; Members of the Committee will know from various policy papers that there has been a growing sense that we need to move towards personalisation of social care. Papers such as Valuing People in 2001, the Prime Minister’s strategy report of 2005—Improving the Life Chances of Disabled People—and the strategy for an ageing population, which came out in 2005, all point in that direction. That was underlined in the Department of Health Green Paper Independence, Well-being and Choice; if I did not tell you that, I am sure that the noble Lord, Lord Warner, would. All that coincided with the emergence of an organisation called In Control, a social enterprise—a business—that offers services to people who want to use direct payments, but has a wider agenda about redesigning social care systems towards self-directed support. Over several years, there was that growing body of thought in policy—it was beginning in practice as well—that there should be ways in which we could make direct payments a reality and set about changing the way in which social care was delivered to, and in conjunction with, the client users. In July 2005 the department announced that it would set up a pilot programme for individual budgets—pilots in which people would be given payments to organise their own care. In November 2005, 12 pilot sites were announced. It is worth remembering as we go on to look at the research emanating from them that each of those sites had resources of between £350,000 and £400,000 from a pilot budget to enable them to be set up. Each pilot was encouraged to use tools that had been previously developed by In Control in conjunction with people who had learning disabilities. One was a resource allocation system for determining how individual budgets should be worked out. The evaluation of those pilots, which is written up in a fascinating document called the IBSEN report, Evaluation of the Individual Budgets Pilot Programme, ran from April 2006 to March 2008. It is significant that in December 2007, before that evaluation finished, Ivan Lewis, the then Minister responsible for social care, declared that individual budgets were the future direction of social care. The IBSEN report is a very interesting and substantial piece of work in which teams of researchers attempted to get into the pilots as deeply as they could to understand what was going on. They looked at people in the pilot groups and control groups of people who were not in the pilot groups and applied different statistical analysis, not just to assess people’s stated feelings and well-being, but to see whether they could find verifiable evidence of improvement in people’s health and social well-being—for example, in their ability to manage daily life activities. The study looked at the extent to which people benefited from the process of having individual budgets, and at whether they found that process difficult or stressful. The research teams considered the impact on commissioning and on both statutory and voluntary providers. Crucially, the IBSEN research looked at cost and cost-effectiveness. In relation to the proposals before us it is important to state that health and health budgets were no part of this. They could not be as there was no legal basis on which to do that. The pilots were solely about social care. There were people in receipt of both healthcare and social care who found it difficult and frustrating that their healthcare was subject to a completely different regime from that of their social care. The report is open about some of the limitations of both the pilots and the research. The pilots were run by local authorities which volunteered, and the report recognises that there is tendency for those who are most keen and enthusiastic to put themselves forward. Indeed, a number of authorities had more experience of working with In Control than others. The timetable for the pilot slipped, which meant that by the time the evaluation took place, some people had only their individual budget for a matter of a few weeks or months. Indeed, some of the people interviewed had not had their budget at all. Therefore, the timetable during which the evaluation ran was greatly condensed. There were many key findings, but I do not have time to go into all of them. It is accurate to say that individual budgets worked for some people. The greatest recorded benefits were for people who had physical disabilities or mental health problems. On the whole, people in those client groups benefited. For others, notably older people, the findings were at best—I stress "at best"—inconclusive, and there were mixed outcomes for people with learning disabilities. That perhaps reflects the fact that older people tend to come to individual budgets at a time of crisis. They can be going along fine, and then they are hit by a stroke or a heart attack and are suddenly in a moment of trauma and vulnerability, and their ability to cope with what is going on around them is different from that of somebody who has had learning difficulties or a physical disability for many years. The report, which is highly tentative in its statements, states that, ""a potentially substantial proportion of older people may experience taking responsibility for their own support as a burden rather than as leading to improved control"." Since then, there have been other reports. I hope that many noble Lords will have seen CSCI’s report, The State of Social Care in England 2007-08, which is a thematic research study into assessment. It arrived at very similar conclusions about individual budgets. One of its key findings was that the resource allocation system, which was piloted for use with one client group, may need to be changed. Perhaps some of the most important parts of the report were the limited findings about the potential impact upon providers of services and the acknowledgement that a great deal more research needs to be done before a system like this is rolled out. I say all that to underline that I am in favour of individual budgets. I want to see them work. I want older people to be able to go out and buy a home-help service when their local authority does not provide one. I want carers to be able to get some help at a time that suits them and enables them to go on working. However, there are a great many unanswered questions about the way in which this policy has worked in social care and a great many more about the impact that it may have in health. That is the background to all the amendments before us. I now wish to move on to Amendment 50. It questions what happens when somebody lacks capacity and has not made a prior statement that he wishes to nominate somebody else to act on his behalf as the recipient of his direct payment. One would conclude from the Bill that in those circumstances a person would not be able to receive a direct payment. The amendment probes that to establish that where somebody lacks capacity, to be consistent with the Mental Capacity Act, it would still be possible to nominate somebody to act as the person to whom the payment could be made.