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I begin by thanking the noble Lord, Lord Darzi, for answering the question that I posed in Amendment 50. I understood him to say that even if someone did not have a lasting power of attorney, it may still be deemed possible for them to have someone who could act as a recipient for a direct payment.
I want to pick up two or three key points that have run through this debate. I begin with those made by the noble Baroness, Lady Campbell. I am talking about direct payments. She made a very telling point when she said that direct payments are a mechanism
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I listened to the noble Lord, Lord Warner, very carefully. One does not have to be some kind of luddite supporter of existing provider arrangements—I am not—to have concerns about the potential impact of direct payments on provision. We will return to that at greater length in our debates on other amendments, but I simply contrast the point made by the noble Baroness, Lady Cumberlege, who said that if providers were no good they should be allowed to disappear, with some of the points raised by other noble Lords about the viability of services.
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As ever, I am grateful to the noble Lord, Lord Walton, for raising a point that I wanted to raise. Far be it from me to wander into the age old, perennial argument about alternative therapies, but I want to raise a potential scenario. Let us say that, in a given geographical area, people are given direct payments and choose to have osteopathy or chiropractic rather than physiotherapy because they find it good for them. I do not think that even the noble Baroness, Lady Finlay, would get upset about that, but what if the consequence of that is that the physiotherapy unit, which also serves the needs of acute patients, becomes unviable? That is the issue of concern to some of us, and we have not answered it this afternoon. We will have to return to it in later debates.
There are other things that I could say, but I do not want to say them at the moment. I am in favour of transforming services to make them more effective for users, but I return to some of the misgivings that, I hate to say, I do not think the Minister answered. I do not think that he can answer them at the moment. Therefore, I thank him for the spirit in which he answered our questions, but the lack of detail serves to underline the problems that some of us still have.
52: Clause 9, page 7, line 8, at end insert—
“( ) as to the manner in which the patient or (if different) the payee may gain access to relevant information;”
Earl Howe: Amendment 52 and the other amendments in this group are in large part about information and support and the training that goes with that. I have enormous sympathy with the considerations that have prompted Amendments 63A and 69B, tabled by the noble Baronesses, Lady Wilkins and Lady Campbell, and I support the probing amendments tabled by the noble Baroness, Lady Barker. Very few patients will be able to purchase services on their own without well informed support and advice. If we want direct payments to succeed in their health outcomes and to achieve the best value for money, patients will need advice to help them to take decisions and make choices.
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One of the problems that certain people foresee with direct payments is the lack of a level playing field when it comes to informing patients about the services on offer and from whom. I do not want to knock GPs, but if a patient receives advice only from a GP who is a service provider, how will that patient get a balanced picture of other, perhaps equally good, alternative ways of spending the budget: for example, via a local pharmacist? I know that the pharmacy profession is anxious about this. A pharmacist may set up in an area and invest in order to provide a first-class service, but if no one knows about it, it will cease to exist.
If we look at eye care, an example that I raised earlier that is not in the normal field of general medical practice, we need to make sure that those who advise patients about the services they can buy with their budget know about the full range of services available to those patients and which services are good. For instance, if no one tells you that you can receive eye care services in your own home, the system is falling short.
The other brief point that I wanted to make was about accreditation, which we debated earlier. To the extent that healthcare services are being provided on the NHS but by non-NHS providers, should we not encourage a system whereby service providers are kite-marked for quality? I realise that patients will not make choices entirely on their own. Nevertheless, without some form of quality assurance and accreditation system in place, the market could become a minefield in certain areas. I would be glad if the Minister could comment on that. I beg to move.
Baroness Barker: I, too, have amendments in this group. The noble Earl, Lord Howe, is absolutely right to focus attention on support, which people who are contemplating the use of a direct payment need to have. I am absolutely sure that a number of patients will need very little help at all. There will be people who might have been through the expert patient programme and know as well as, if not better than, the people engaged in their treatment what they need, and they will know where to get it and what to do with it. However, there will be others who do not.
It is quite telling that many of the amendments in this group have been put to us not by provider organisations but by representatives of quite widespread users. Amendments 53 and 54, I am afraid, reflect another failure on the part of the people responsible for setting up the pilots in social care. It was initially proposed that the pilots in social care should include people who had sensory disabilities, but when the pilots took place, lo and behold, those people had been missed off the list and never properly got a chance to have a role and a say in those pilots. We know that quite a number of people who have sensory disabilities are users of NHS services. People who have sensory disabilities have a type of vulnerability that is different from that of learning disabilities or people who are old. It is not that those disabilities are worthier of attention; they are simply different and need to be involved.
I have not framed the amendments in terms of risk, and I have not chosen to speak about risk overall, because one of the great benefits of direct payments is
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Amendment 69 is somewhat different. It would place a duty on PCTs that intend to make direct payments to commission advice and advocacy services. I accept some of the implicit criticism of this in some of the amendments tabled by the noble Baroness, Lady Campbell. I know that it is slightly deficient. None the less, it points up a significant issue.
I do not know whether other noble Lords go to conferences at which people, particularly those in local authorities, tell people about the imminence of direct payments and self-directed support. There is usually a very informed, zealous and passionate analysis of the benefits of individual budgets, self-directed support and direct payments. Then when it comes to the practicalities of how the system will work, it becomes a little quiet. If someone in the audience then asks about support and advocacy, it becomes very quiet indeed and sometimes silent. Sometimes the person giving the presentation says, “Of course there will be advocacy”, but when asked if they will pay for it, the answer is no. That is the key to this issue. This is one of the most essential amendments of the lot. If there is no readily available source of support, which people can use or not as required, the potential for this policy to fall rapidly and immediately into disrepute is extensive.
I give notice to the noble Baroness, Lady Campbell, that I have a point to make on her amendments when she speaks to them.
Lord Campbell-Savours: I shall speak to two amendments: Amendment 57, which I tabled, and Amendment 54. In speaking to Amendment 57, I should point out that this comes from the UNISON stable. As I have said before, I have a non-pecuniary relationship with UNISON. Its concern should be heard during a Bill’s proceedings, particularly on the viability of services, which to some extent was my case when we considered maternity services.
UNISON is very much in the front line when it comes to the implementation of the Bill in the sense that many of its members will be affected by it. That does not mean that it is bad, but we have to be sensitive about what we are doing, particularly in relation to the interests of staff. The union is concerned that the impact of the proposals on staff, such as workforce planning or accountability when a patient embarks on a course of treatment that conflicts with professional opinion, has not been sufficiently considered. The union is keen to have proper assurances that staff will be properly protected and supported when dealing with a patient using direct payments. I am sure that the Committee is well aware of the implications of what might happen, and of the circumstances.
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As in social care services, while some will use their budgets to opt out of generic health services, those who cannot or choose not to do so will be left with a service that perhaps no longer has the vital critical mass of service users to make it viable. The union believes that these complex questions have not been satisfactorily addressed, and continues to be concerned that although the NHS is based on the principle of universal service, direct payments could fundamentally undermine that. My noble friend will know that the unions are following the proceedings of the Bill very closely because thousands of their members will be affected. It does not mean that the union is totally opposed in every way to the principle of direct payments, but it has considerable reservations about how they might operate in particular areas. I hope that my noble friend will deal with some of those concerns as we proceed.
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- “ensure that appropriate training and guidance is provided for patients and (if different) payees to manage their direct payments and to safeguard effectively against potential abuse”.
In the excellent document that my noble friend produced last year and which I have read several times in the past few weeks, there are references to the circumstances in which payments will be made. On page 24, there is a reference to the:
“NHS continuing healthcare ... mental health services ... learning disability services ... maternity services ... end-of-life care ... and ... some long-term conditions, especially where there are complex needs or opportunities to focus on preventive interventions”.
- “personal health budgets can be used for any goods or services agreed as part of a care plan that are likely to meet the individual’s agreed healthcare outcomes and would be appropriate for the state to fund”.
It talks about any goods or services that are agreed. On page 38 is a section that deals with the rights of patients to determine what they wish to purchase:
“People should have flexibility to spend the resources allocated to them to meet their needs flexibly, and in ways which reflect their own priorities”.
I presume—I am just a consumer not a professional—that there will be circumstances in which the patient argues with the person designing the care package about what should be made available, and there will be divisions of opinion. In many ways, we are absolutely dependent on the expertise of the people who are designing that care package.
The noble Baroness, Lady Campbell, in her very famous speech, which deserved a parliamentary award—it was a marvellous speech—commented that she could not get through to the person in the National Health Service what she wanted. They kept telling her that they wanted to spend £3,000 and she kept telling them that she wanted to spend £200. There did not seem to be the ability to communicate. Obviously, she is very articulate and she told them what she wanted, but they were not giving her what she wanted. Do not get me wrong; I am not against the whole idea, but I wonder whether the expertise is there in healthcare, which I would have thought is
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I can imagine circumstances in which the patient might say, “I want a £200 mattress”. The manager might say, “It is in your care package, but we think you should have this mattress”. I cite my own example. I have a whole series of complaints, one of which is ankylosing spondylitis, which noble Lords will know is an extremely painful and disabling condition. I have three beds in three different places, all of which could have cost me £3,500 apiece if I had bought them from Adjustamatic and not Dreams, where I paid £450 apiece for exactly the same bed. Who is going to determine where the bed is bought? Will the source of the bed be determined? Mine rises and falls. I might wake up three or four times a night, and I press the buttons to change the position of my spine to relieve pain. If I had one of these packages, I might well want a particular kind of bed and they would disagree. I will not have one of these packages, because I will be one of those people who do not want to go into the system. I will rely on the health service to provide for my needs. I am just a little concerned about how that might operate in practice.
However, I am also worried about firms, such as Adjustamatic and other companies, which line up to pressure their patients to buy products and ring me up because they know from the records of firms with which I have been in contact to buy pain-relieving equipment that I have a particular problem. People who are in receipt of these payments may suddenly start receiving phone calls and be targeted by people saying, “We think this is a very good product for you. We think you should buy this. You need this massage machine or that exercise machine. You need all these so-called alternative medicines that are now on the market”.
When all this pressure is put on patients, will they be able to resist the purchase of the product, particularly in the area of pain relief for arthritis and other such conditions, rather than what the person building the care package has decided might be in their best interests? Last week, I received a catalogue from a firm called Verdict. It shows a massage seat that costs £1,299. I know that that chair can be very helpful to people who have a particular kind of pain because I have sat in one in St Bartholomew’s Hospital, and it works very well. What happens if the patient says that he wants one of those chairs, and the person producing the package thinks he does not need it? That potential area of conflict interests me.
Amendment 54 refers to abuse. I do not know what the safeguards might be, but is it possible that in a care setting someone might want the client to buy a piece of equipment for him, not for the person who is the patient being funded by direct payment? I hope that these problems will be dealt with in the regulatory arrangements that Ministers will subsequently introduce. Unless I misunderstood the amendment moved earlier by the noble Lord, Lord Hunt, I think that he was trying to relax the regime by trying not to have too heavy regulatory control over what could be acquired in those circumstances. I
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Lord Walton of Detchant:I return briefly to the issue that I raised earlier in our debate on Amendment 54, which refers to safeguarding effectively against potential abuse. What will the Minister say about complementary and alternative medicine? Let me reassure the noble Baroness, Lady Cumberlege, by making it clear that there is no doubt that osteopathy and chiropractic by well trained personnel are valuable in the management of musculoskeletal disorders of various kinds. There is also no doubt that there is a physiological basis for the use of acupuncture in certain situations and that it has a role to play. Equally, patients with certain chronic conditions, not least those with terminal illness who may for instance be dying of cancer or other conditions, get great comfort from complementary medicine such as aromatherapy, massage and similar techniques that have no direct curative or therapeutic effect but are complementary to the other treatments that they are receiving. I support all of them. On the other hand, there is no way in which direct payments should ever be used for such things as iridology, radionics or crystal therapy, which have no evidence base and should never be paid for by the NHS. How can that be prevented?
Baroness Wilkins: I shall speak to Amendments 63A, 69A and 69B in my name and that of my noble friend Lady Campbell. I hope that this group of amendments will help to provide a solution to the various points that have been made. I hope that it is clear that I support Amendment 69, but I believe that more than advocacy services and advice is needed because managing the direct payment is important. I was pleased to hear the strong case made by the noble Baroness, Lady Barker, in her introduction to the first group of amendments, on the vital need for support services for people receiving direct payments, and I look forward to the further point that she wishes to make on this group.
The purpose of these amendments is to ensure that the importance of effective support is recognised and built into the pilot schemes on direct payments. My noble friend’s reply on Second Reading was somewhat tentative, when he said:
“We would expect the PCTs to work with local authorities and third sector organisations to provide guidance and support”.—[Official Report, 4/4/09; col. 752.]
He said that “independent or peer advocates” may also have a role in supporting people through the process.
I urge the Minister to make it clear that effective support is an essential element in establishing successful direct payment schemes, and in doing so I again declare my interest as vice-chairman of HAFAD, which is a user-led organisation that runs a support scheme for direct payments users in social care. The social care model in direct payments has clearly demonstrated the benefits of peer support from user-led organisations. The benefits of taking control over one’s services are considerable, as the famous speech of my noble friend Lady Campbell, spelt out so well on Second Reading.
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The transition of being a passive recipient of services to take control is not a simple one. As any employer knows, there are many pitfalls to be avoided, which can be serious if people do not have the right advice, advocacy and support. Managing support is crucial.
HAFAD’s support scheme has numerous examples of people who have been put on direct payments by the local authority without any reference to support but who are left to negotiate the transition on their own. Last summer, a woman faced huge bills because she had not paid any national insurance for her personal assistance or paid tax, assuming that that would be dealt with by the council. Others have faced the trauma of a threatened employment tribunal because they advertised wrongly and were totally unaware of their legal responsibilities as an employer.
Our experience at HAFAD shows that the professionals—social workers, in this case—are not aware of employment obligations and are not equipped to give this time-to-time support. The most successful direct payment scheme is in social care, where new users are put in touch with a local body of expertise that is built up by their peers who have gone through the same process as themselves.
User-led organisations give people the confidence to take up the direct payment, as too often people are put off by the notion that they will be cast adrift to do everything themselves. The National Centre for Independent Living, which has long experience in this area, supports the pilots but warns that the schemes could be ineffective if support is not available. The health pilot schemes will benefit considerably if the Minister ensures that we learn from the social care precedent and establish effective support arrangements. The right support will mean that people can maximise the use of their direct payments, greater numbers will be attracted to take part, which will help in the analysis of the pilots, and most important, there will be higher user satisfaction and the increased likelihood of people’s health aspirations being met. It is a false economy not to ensure that people have the backing of such user-led support, advocacy and advice in the pilot schemes. I hope that my noble friend will support the amendments.
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Baroness Barker: In response to the amendment tabled by the noble Baroness, Lady Wilkins, I want to point out a particular problem. Some organisations, such as In Control, have a wealth of experience in this area. So, too, do other organisations, in a different way. My former employer, Age Concern, has a tremendous amount of experience in enabling older people to access services, just like any number of other voluntary and carers’ organisations. However, those organisations have a direct interest in these pilots. In Control is a social enterprise and is therefore a business, and has an interest in seeing that the pilot work well. So, too, do some of the service providers. I do not think that those financial interests, those conflicts of interest, are wrong; they are just a fact of life. In a pilot, however, they and the role that they play need to be acknowledged. I hope that the noble Baroness would agree with me that, in the design and review of the pilot, that very
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Baroness Campbell of Surbiton: I will speak briefly in support of the amendment, because we have gone over all the arguments on the importance of a support scheme quite well. There is an awful lot to learn from the 28 years of experience of setting up support to help people to become independent and to self-manage. I hope that we will truly draw on that experience in the pilot and not reinvent any wheels.
The one important thing that we have not spoken about much is advocacy in these support schemes. I do not mean advocacy simply to get the care package that you want, but advocacy to enable the organisation and the development of this different culture of self-operated care to be discussed and understood by the providers, local authorities and PCTs in the future. There is still very little knowledge about what direct payments are. You go to a PCT and talk about direct payments, and they kind of look at you, a little blurry, and say, “Ooh, isn’t that something they do in social care?”.
There is resistance, which we have already heard about, from the social care workforce. It took us probably about 28 years to persuade social workers that we were the experts in our own situation, and that this could actually be a shared approach to the development of social care in this country. I spoke to an older person, who was 70 and using direct payments, last week. She said, “Fundamentally, it comes down to doing things with people, not to them or for them”. She emphasised the “with”. We do not do this on our own; it has got to be a contract.
It is important to look at support services not only in terms of the information and advice on the nuts and bolts of employment, contracts or pay and conditions. That is all very important and has been vital. Resistance from the local social services has also been looked at, people have been talked to who have said that the people down at their day centre could not manage, and truly believed it. Those people said, “It is all right for you. You’re articulate, you’re okay, but not my people”. An element of cultural shift still has to be made.
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