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Grand Committee

Monday 2 March 2009

Health Bill [HL]

Committee (3rd Day)

3.30 pm

The Deputy Chairman of Committees (Lord Colwyn): Good afternoon. If there is a Division in the Chamber while we are sitting, the Committee will adjourn as soon as the Division Bells are rung and will resume after 10 minutes.

Clause 9: Direct payments for health care

Amendment 50

Moved by Baroness Barker

50: Clause 9, page 6, line 18, at end insert—

“( ) Where a patient lacks capacity to consent to a direct payment, and has not nominated a person, a direct payment can be made to a suitable person, as specified in regulations.”

Baroness Barker: 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

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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

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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

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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,

3.45 pm

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.

Earl Howe: I do not think that the noble Baroness, Lady Barker, needs to apologise at all for the number of amendments she has tabled for this section of the

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Grand Committee. They all appear to be based on very real concerns. I identify myself with everything that she has just said. I shall speak to my Amendment 51, which I signal to the Minister at the outset deploys the standard Committee device to leave out a passage of the Bill in order simply to debate it rather than to indicate dissatisfaction with it.

On talking to people outside Parliament in the medical community and the voluntary sector, we have a division of views about direct payments. As the Committee knows, I am very much in favour of the concept, although we need to tread carefully in introducing them, which is why I very much support the idea of pilots. I think that much of the voluntary sector would express a similar view. However, the BMA is very wary of the idea. In fact, I think that one could say that it has considerable reservations about the whole notion. It sees direct payments as making continuity of care more difficult and not easier, and fears that they will increase bureaucracy and transaction costs. While I think that those concerns are overplayed, we should not ignore them, coming as they do from the BMA. It would be helpful if the Minister would address those particular issues in his reply.

Setting those concerns aside, there is no getting away from the fact that with direct payments there is a trade-off between patient empowerment—leading to, one hopes, better outcomes—and financial risk for PCTs, which lose control of commissioning while having to pick up the tab for the services commissioned. Most enthusiasts for the concept of direct payments would say that this risk can be managed and minimised if we are careful about how the scheme is rolled out, and to whom.

Like the noble Baroness, I should like to hear more from the Minister about the kinds of people for whom the Government regard direct payments as being suitable. An example is eye care. Like pharmacists, opticians tend to be conveniently located in shopping areas and supermarkets. As we all know, optical practices already provide high-quality eye care, yet too many patients travel to overstretched hospital eye departments for relatively routine check-ups which could be managed equally well or better in the community. In Wales and Scotland, community optometrists play this sort of enhanced role in eye health services, so there would seem no reason why the same should not happen in England.

Many people with mental health problems would say that the chance to be in the driving seat when it comes to choosing and buying services is exactly the kind of empowerment which will contribute to a more rapid recovery. Of course, certain kinds of mentally ill people may not prove suitable to handle direct payments, but many will be. I therefore would be glad to hear the Minister say that mental health care will not be ruled out as an area for trialling when the pilot schemes are commenced.

From all that the Government have said, they see direct payments as being suitable for those with stable, long-term conditions whose healthcare needs are reasonably predictable. I agree with that. As we discussed at Second Reading, very often the people in receipt of direct payments for healthcare will be those who receive

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means-tested social care—I am thinking here of the physically disabled. Will the Minister say whether children, for example, or people who lack mental capacity and are looked after by other people, as asked about by the noble Baroness, will be excluded?

There has been a lot of discussion about maternity services. On the face of it, if we believe in choice for expectant mothers, why not empower them to buy the kind of service that they want when they give birth? However, this is one area in which things are not quite so simple, because giving birth is not always a predictable process, given the risks and complications that may arise. Will the system be able to cater for a situation in which, say, a woman who has opted for a home birth with a midwife suddenly needs to be moved to a consultant-led obstetric unit? In other words, how much flexibility will be built in to enable people to switch the service that they purchase, especially bearing in mind that the cost of two alternative services may be very different?

Finally, will the Minister clarify the extent to which those in receipt of direct payments will be allowed to use them for purchasing services that are not available on the NHS? One of the principles set out in Personal Health Budgets: First Steps, a copy of which I have here, is that having a personal health budget does not entitle someone to more, or more expensive, services. Nor does it entitle them to preferential access to NHS services. If a service is not available from the NHS locally, will it be possible for someone to buy that service from the independent sector?

Baroness Cumberlege: I have coupled my name with the amendment tabled by my noble friend Lord Howe, and I declare an interest as executive director of Cumberlege Connections and patron of Independent Midwives UK.

I thank the noble Lord, Lord Darzi, and the noble Baroness, Lady Thornton, for the briefing meeting that they held last week, which I found very helpful indeed. I have also found very helpful the document—Personal Health Budgets: First Stepsto which my noble friend referred. At that meeting, I told noble Lords that I am strongly in favour of personally held budgets, and particularly direct payments. At Second Reading, the Minister told your Lordships that he believed that,

I so agree.

I was interested to hear the history of the policy, which the noble Baroness, Lady Barker, outlined. I took through the Community Care (Direct Payments) Act 1996. I remember that there was very little opposition to it, and it went through quite easily. In the intervening time, we have seen evidence of a very successful social care policy. I appreciate that it is not all wonderful, and that there are people who have found it quite challenging, but that is no reason not to go ahead with this legislation.

I have been particularly impressed by Kent County Council, whose inspirational director has introduced the Kent card. It is very similar to a credit card and

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has a monthly allowance that is based on the user’s needs for the service or services of their choice. The strength of the Kent scheme appears to be the minimum bureaucracy, and I understand that the county council is now having detailed discussions with Eastern and Coastal Kent Primary Care Trust to see how the card can be used as a vehicle for the implementation of personalised health budgets.

I have also read the evaluation report which the noble Baroness, Lady Barker, mentioned. She is quite right that it highlights things that have proved to be a challenge, but it also says that individual budgets were generally welcomed by users because they gave them more control over their lives and produced better outcomes for the costs incurred compared with the standard care. I am very tempted to get into a Second Reading debate, but I am not going to do that. I take the lead from my noble friend, who was trying to explore the range of people who could benefit from direct payments. That brings me to the amendment in my name, Amendment 58A, which would enable the Secretary of State to make regulations,

4 pm

In the foreword to Changing Childbirth, which was a policy document for maternity services that I wrote when I was a Minister, I wrote:

“Pregnancy is a long and very special journey for a woman. It is a journey of dramatic physical, psychological and social change—of becoming a mother, redefining family relationships and taking on the long-term responsibility for caring and cherishing a newborn child. Generations of women have travelled the same route, but each journey is unique”.

I suspect that there is not one person in the Palace of Westminster and beyond who has not been touched by a midwife. There is an understanding that every mother and every newborn baby needs a midwife and, of course, some need a doctor as well.

At such a time, the relationship between mother and midwife is critical. Choice of midwife, choice of clinical care and choice of place of birth make for a more confident mother, a more successful pregnancy and birth and better postnatal care. Giving birth is not only a unique experience: it is a team effort involving mother, midwife and sometimes a doctor. If I were to write that foreword again today, I would include the father. I witnessed our son bathing his newborn baby from the day that he was born. I wondered at this tall, handsome fellow, tenderly holding in his huge hands this tiny mite, who was hardly bigger than a packet of flour, and tending him with huge confidence. Every night it is he who reads the bedtime story and he, like many other fathers, is totally involved in bringing up his son. Compared with past generations, that is a huge social change.

Fifteen years ago, Changing Childbirth did make a difference. Its three tenets of choice, continuity of health professional, and control by the woman over her care were adopted and implemented in most maternity services around the country. Its philosophy was embraced, putting the mother at the centre of care. In recent years, although that philosophy has not been eroded,

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its implementation has. We hear too many stories of mothers being left alone in labour and their partners traumatised by what should be a joyful experience. The problem is principally due to the shortage of midwives. Again, it is not recruitment; the service is under such pressure that midwives leave.

The impact on parents and their families of a traumatic experience is simply devastating. There is strong evidence that the emotional turmoil and distress that follows is profound and long lasting. The last official inquiry into unexplained stillbirths—the Confidential Enquiry into Stillbirths and Deaths in Infancy—found that nearly half of all unexplained stillbirths might have been avoided with better antenatal care.

At Second Reading, the noble Lord, Lord Darzi, stated that his aim was for,

With regard to maternity services, we have a long way to go to recover the quality that was apparent in the mid-1990s. Where we do see outstanding quality, it is in the care given by independent midwives. The underlying core principle of independent midwifery is that the woman chooses her midwife at the beginning of her pregnancy. She is not simply allocated one. That enables a true partnership between a woman and her midwife to develop, with all the benefits that that brings. Our modern acceptance that women should give birth with total strangers just because our system of provision has evolved into an industrial model needs to be challenged. We need a more humane, supportive and essentially safer model based on the genuine continuity of care offered by independent midwifery.

Some women are able to choose an independent midwife and do so because these midwives are able to give the time and information to enable women to make their own informed choices. They choose independent midwives because they want the continuity of care, because they want to know who will be with them when they give birth to their babies, because independent midwives know about and support their intentions, and because they are with them throughout their postnatal period. They choose them, especially, if there may be complications and the woman may need extra support during her labour and giving birth. The results are self-evident. There is a much higher home birth rate—64 per cent, whereas the national average is around 2 per cent. There is a much higher normal birth rate—77.9 per cent. There are fewer interventions, high breast-feeding rates and fewer admissions to special care baby units.

In contrast to the NHS services, independent midwives can give the care that meets all a woman’s needs, including her emotional ones. Women who have had a traumatic first birth make up approximately a third of an independent midwife’s caseload, including vaginal births after a caesarean section. Women frequently comment on the importance of having time to talk through their fears and their previous traumatic birth experience, resulting in a normal, positive experience for their second and subsequent births.

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