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In moving Amendment No. 123 I shall speak also to Amendment No. 124. I do not want to pre-empt amendments we shall reach in a short while, but for the purpose of these amendments I am acting as advocate for the noble Baroness, Lady Finlay, given that she cannot be here. I assure the Committee that I am independent and not in the pay of the noble Baroness.
In the context of research, the purpose of these two amendments is to seek clarification of the meaning of subsection (2). Throughout our debate on the clauses covering research, while noble Lords have approached the matter from different starting points, they all have the same intent; that of trying to establish that what is provided for in the Bill guarantees that a person who lacks capacity and is involved in some form of research is not subject to exploitation, degrading treatment and so forth. Our differences are really ones of operation.
The noble Baroness, Lady Finlay, is well known to noble Lords for her wide practical experience of these issues. The aim of her amendments is simple; to establish, for example, that a clinician can hold someone's arm when taking blood. Otherwise, in the attempt to take blood people may pull in the wrong direction or become confused. The result is that they may suffer damage from the needle.
The noble Baroness has also referred on many occasions to the physical side effects of some forms of injury. In particular, she has said that when someone sustains a severe head injury, they may make spinal reflexes which suggest that they are endeavouring to pull away from painful stimuli. In fact, all they are doing is responding physically to the stimulus rather than withdrawing consent. In her briefing to me, the noble Baroness also explained the operation of the Glasgow Coma Score levels, which are detailed measures of physical responses to stimuli.
I suspect that there is something of a crossover here between research procedures and some of the signs one might look for when seeking to establish communication with those who do not have the capacity to speak. I realise that we are straying into detailed operational territory, but given the arguments put forward by the noble Baroness, it would be helpful if this subsection were clarified further. I beg to move.
I am sympathetic to the matter raised. I understand that there may be times when a person in research might temporarily or instinctively resist the application of some essential procedure that is intended to protect them from risk of harm, distress or pain. It is certainly not our intention to require researchers to discard standard safety measures simply because a person without capacity objects to them.
The researchers have, and continue to have, a duty of care and perhaps also a statutory duty under health and safety legislation to protect their research participants. I agree that this clause should not interfere where it might be necessary gently to hold a person so that a sample or measurement can be safely obtained.
However, I hope that noble Lords, and the noble Baroness in her absence, will accept that the amendments tabled here may not achieve the necessary effect of providing for another kind of objection or resistance to be respected. The way in which they are drafted at the moment could cause problems in another area; they may go too far. I accept that the amendment would retain the principle in Clause 33(3) that if the person indicates in any way that he may want to be withdrawn, that must happen.
But I want to look again at other related amendments, together with these, and reflect further on what the appropriate balance must be within research. So I accept that there is something in the amendment that we need to address in order to protect participants under normal duties of care. I am not sure that this wording does the trick. We are getting into complex areas where one amendment may interfere with another amendment. There is a complex set of relationships and we want to come out of this with the balance right so that real objections expressed by someone participating are observed, listened to by the researcher and acted upon. But gentle guiding in order to protect someone who may react too precipitately to a procedure has to be respected.
I hope that the noble Baroness will accept that I wish to reflect on this issue and take further advice before returning with any necessary amendment at Report stage. With that assurance, I hope that the amendment can be withdrawn.
I thank the Minister for that reply. This is an issue that should be pursued. I hesitate to suggest that it is an area in which one would do well to consult with clinicians in order to be quite clear about the point we are trying to reach and to come up with wording which reflects that. None of us would wish to see a situation where people were in pain and were unable to have their views considered; neither do we wish to stop people from being involved in simple, routine procedures that may be to their benefit. I beg leave to withdraw the amendment.
moved Amendment No. 126:
Page 19, line 29, at end insert—
"( ) But (save only for an advance decision of P which has effect and of which R is aware) nothing in this section requires treatment that P has been receiving as part of the project to be discontinued if R has reasonable grounds for believing that there would be a significant risk to P's health if it were discontinued."
Clause 33(4) sets out an additional safeguard relating to research carried out on someone who lacks capacity to consent to it. It states, quite rightly, that if at any point in the project the researcher discovers that any of the statutory conditions laid down in Clause 31 are no longer met in relation to the patient's participation, he must immediately withdraw the patient from the project.
My amendment seeks to add a small rider to that which is intended to mirror the very similar provision contained in Clause 32(6). That provision states that where a patient is withdrawn from a research project because the person being consulted says that it would run contrary to P's wishes and feelings, withdrawal from the project need not involve halting any treatment being given to P as part of the project if the doctor's judgment is that there would be a significant risk to P's health in doing so.
My only purpose in bringing forward Amendment No. 126 is that the same provision ought to apply in relation to Clause 33(4) because I cannot see any logic for it not applying. I beg to move.
The noble Earl is quite right: we need to have consistency on this issue, and I understand why he has raised it. It affects situations in which the person without capacity asks or indicates that he or she no longer wants to be part of the research. The amendment would mean that a researcher would not have to stop any treatment that is given as part of the research if he or she felt that doing so would mean a significant risk to the patient's health.
Noble Lords may be aware that the Government introduced precisely this safeguard at Report in another place as part of an amendment to remove the right of researchers to apply to the court to overturn the decision of a carer that the person should be withdrawn from the research. The existing Clause 32(6) says that in such cases, the request to withdraw should not automatically mean that treatment would have to stop if the researcher felt that there would be a significant risk to the person's health.
As presently drafted, Clause 32(6) applies only where the carer requests removal from the study, not where the person himself indicates that he does not want to continue. We are extremely sympathetic to the purpose of the amendment. It seems nonsensical to have the one and not the other. However, I should like to take advice on whether we need a single set of safeguards around withdrawal or similar clauses in respect of withdrawals under Clauses 32 and 33. We will work that out between now and Report. On that basis, I am sure that the noble Earl will withdraw his amendment.
moved Amendment No. 128:
After Clause 33, insert the following new clause—
An action carried out on or in relation to a person who lacks capacity to consent to it ("P"), notwithstanding that the action may not be in his best interests, is lawful if and only if in the opinion of two registered medical practitioners—
(a) the action has the potential to avert the death of, or serious illness in, another person;
(b) there are reasonable grounds for believing that the risk to P in performing the action will be negligible;
(c) anything done to P will not interfere with P's freedom of action or privacy in a significant way or be unduly invasive or restrictive."
Amendment No. 128 is prompted by concerns raised by the BMA. The Bill does not tackle interventions that are not in the best interests of the incapacitated person but are minimally invasive and provide a significant benefit for third parties. Perhaps the most obvious example of this type of intervention is where a nurse or other health professional has suffered a needle-stick injury and there is good cause to think that the patient may have a serious blood-borne condition such as HIV, for which treatment is available. In those circumstances, the Bill appears to rule out taking a blood sample from the patient for testing.
There is no way of making an informed decision about whether to give treatment to the injured nurse, and no way of communicating with the patient. GMC guidance makes it clear that anyone taking a blood sample in these circumstances could render themselves liable to criminal charges. Even the testing of an existing sample could be challenged in the courts. That is surely not a desirable state of affairs.
The second situation I want to mention under this heading is genetic testing. The Human Tissue Act 2004, I am very glad to say, contains a provision for regulations to allow genetic testing of a tissue sample from an incapacitated adult for limited purposes other than their own medical benefit. However, it is the Mental Capacity Bill which would cover the taking of samples for such purposes—that is, if only there were an appropriate provision allowing it.
I need to ask the Minister whether taking blood for genetic testing for the benefit of a relative would satisfy the best interests test as a matter of law. This was one of the issues that troubled the Human Genetics Commission in its report of 2004 called Inside Information, and we need clarity on it.
I hope that I have said enough to persuade the Minister on what is quite an important issue. I beg to move.
I should like to speak to Amendment No. 128A, which drives at the same point that the noble Earl, Lord Howe, has raised. On balance, I probably prefer the wording of his amendment to mine, so in the highly unlikely event that we succeed with this one, I shall give way to the noble Earl.
"I can confirm that the Bill will not prevent a genetic test for a familiar cancer, for example, that might not be essential to P's medical care but would provide considerable benefit to some other family member.
"Similarly, HIV testing would be lawful if there were a needlestick injury to a nurse involved in P's care and if a timely diagnosis of HIV status would be in P's best interests, so that treatment could be started".—[Hansard, Commons, 14/12/04; col. 1601.]
The point about which the BMA is concerned—in my view it is right to be concerned—is that it is not yet clear whether these kinds of tests could be made only where there was a clear direct benefit to P rather than to a third party. My fear is that where third parties have a legitimate concern they might end up manufacturing reasons to get the result that they need. I hope that the Minister will respond to that.
We are in deep legal territory with this set of amendments. I have taken careful note of points made by noble Lords and of points previously raised by the British Medical Association about acts relating to care or treatment of third parties. We are very sympathetic to the difficult position in which doctors can find themselves placed when faced with the need for testing of the kind that was mentioned by noble Lords and by the BMA. However, the Government have rightly made the principle of best interests the cornerstone of the Bill, and it would therefore seem unacceptable to make a provision for testing a person who lacks capacity for a purpose that is not in his best interests.
In earlier correspondence with Ministers the BMA understandably sought assurances that it would sometimes be possible to conduct a diagnostic test that might primarily be of benefit to a family member, in the case of genetic diseases, or perhaps to a nurse or doctor if a needlestick accident had occurred during treatment given to the person without capacity.
Our view is that an amendment to the Bill of the kind proposed is unnecessary. We consider that as it currently stands, the Bill would allow for acts the primary purpose of which would be to benefit a third party, provided that those acts are in the person's best interests. I would like to assure the Committee that the interpretation of best interests could be broader than the person's medical best interests. That is the critical point which is at stake.
As was said in another place, I can confirm that the Bill will not prevent a genetic test for a familial cancer, for example, that might not be essential to the person's medical care, but would provide considerable benefit to some other family member. Similarly, HIV testing would be lawful if there were a needlestick injury to a nurse involved in the person's care, and if a timely diagnosis of HIV status would be in the person's best interests so that treatment could be started.
I am pleased to be able to say that we will make it clearer in the code that in such cases the possible wider benefit that accrues from testing that has been endorsed in legal judgments—those legal judgments are critical—will continue to be an important factor in determining best interests. If a diagnostic test is in the best interests of a person who lacks capacity, it should be lawful and doctors performing such tests have the protection from liability afforded by Clause 5. It is a matter of legal interpretations using the basis of previous legal judgments. Certainly our legal advice is that the kind of circumstances mentioned by the noble Earl, Lord Howe, and the noble Baroness, Lady Barker, would be covered under the Bill as it is currently drafted. However, we accept that clarifying these legal interpretations in the code is a desirable and essential way forward.
We will also consult on a role for the independent consultee in such decisions so that there are mechanisms—other than the Court of Protection—to ensure that the person's best interests are being met in light of the specific circumstances of each case.
I hope with that reassurance the noble Earl will be willing to withdraw the amendment.
I was very impressed with the intention in paragraph (c) of the new clause to ensure that anything done to the patient "will not interfere" and so on—the words are there for everyone to read. Does the Minister feel that the Bill's current wording looks after that point raised in my noble friend's amendment?
The nub of what I was saying is that the concerns expressed by the BMA and by the noble Earl and the noble Baroness, Lady Barker, are already met in the Bill because of the legal judgments relating to the wider interpretations of best interests. I was saying that, no matter how beautifully crafted, the wording in the amendments tabled by the noble Earl, Lord Howe, is not necessary because the protections he is seeking are in the Bill as presently drafted.
I am very largely reassured by that reply. I am grateful to the Minister for confirming that the Government will look at ways of clarifying the code of practice. I am, however, left with just a residual niggling worry. The problem with what the Minister has said is that his reassurance is predicated on the assumption that there will always be some benefit to the incapacitated adult in taking a blood or tissue sample, even though that may not be the prime purpose of the intervention. In the case of a needle-stick injury, what happens if the patient is not expected to recover? If there is no clinical benefit to the patient, and no other intangible benefit at all to the patient in the blood sample being taken from him, it is difficult to see how the best-interest test would be met in those circumstances.
Nevertheless, I am comforted by the Government's reading of the Bill as it stands. I think that that is an important statement by the Minister. I shall reflect on what he has said. I beg leave to withdraw the amendment.
I am very happy to move Amendment No. 129 and to speak to the whole series of amendments grouped with it. I am delighted to do so because the Minister conceded the point on Second Reading. So we can all be in agreement that the term "consultee" is not appropriate. We are not arguing that there should be advocates or indeed an advocacy service; we are simply seeking to define the scope of that service.
I suppose that I am starting from the point that the Joint Committee made on advocacy. We were mindful that the Bill's provisions could lead to a completely unrealistic demand for an almost limitless service. Being pragmatists, albeit a bunch of pragmatists who discuss principle, we realised that that was not going to be feasible. We were also mindful in the Joint Committee that the subject of advocacy turns up time and time again. I have lost track of the number of times when, speaking from these Benches to various Bills, I have argued the case on advocacy. Under the Adoption and Children Act, local authorities have a duty to assess a need for advocacy but not to provide it. Under the Health and Social Care Act 2001 the Secretary of State has a duty to arrange for the provision of independent advocacy services, but only to provide assistance to individuals who have complaints about healthcare services.
In the past 10 years, advocacy has recurred as a theme in legislation, and it has grown in practice. I have worked in the field of health and social care for about 20 years, and I now go to meetings where it is expected that people will be there who are acting as advocates for people who lack capacity. Even five or six year ago, that did not happen, but now it is the norm. In this of all Bills it is important not only that we consider the question of advocacy, but that we make an appropriate decision about it. The noble Baroness has promised to return at a later stage with more detailed proposals.
On the issue of titles, I gather that there is a notion doing the rounds that the advocates to do with this Bill should have a legislation-specific name, rather in the way that mental health advocates do. I am not terribly convinced by that. I understand why mental health advocates are singled out in the way that they are; they work to specific legislation for a specific purpose. This legislation is much wider and much more flexible, so it would be difficult in practice to separate out people acting as advocates under this Bill from advocates more generally.
I am glad that in the course of our deliberations we are going to get away from the idea that the role of an advocate is somehow to provide assistance to decision-making bodies—that is not the role of an advocate. It is clearly understood to be someone independent who enables someone who lacks capacity to make decisions for themselves. The last thing that we should do under this legislation is come up with some hybrid or corrupt definition of advocacy, which would be of no use to anyone.
At various times during the passage of this legislation we have looked to Scotland, which is always a good idea. In Scotland an advocacy service has been set up related to the legislation that was passed there. It has been interesting to read the report of the research into the implementation of that Act, which has shown how important voluntary organisations have been, not only in establishing advocacy services to which people felt they could turn, but in setting standards in relation to those. I do not want to pre-empt the next group of amendments, which will be introduced far more elegantly than I could ever do by the noble Lord, Lord Rix. At the end of our discussions, we should at least begin from a point that is specific to the role and not the legislation, because that is what life is like. I beg to move.
I have added my name to this amendment, and I am happy to support the remarks made by the noble Baroness, Lady Barker. She, the noble Lord, Lord Goodhart, and the noble Earl, Lord Howe, have proposed this amendment. Amendment No. 142, which is in my name and that of the noble Baroness, Lady Masham of Ilton, is grouped with it.
The amendments—a great number of them are grouped together—take up a debate that occupied a lot of time in another place. The Government propose to introduce independent consultees along the lines of existing advocates to advise National Health Service bodies and local authorities about what is in a person's best interests when a decision is being made about serious medical treatment, or before certain types of accommodation are provided. The Government also propose to provide £6.5 million to fund the arrangements, but that is only for persons without friends and families—the "unbefriended".
Much of that is clearly good and should be welcomed, so I applaud the Government as far as it goes, but concerns remain. Groups such as the "I Decide" coalition and the Making Decisions Alliance have been at the forefront in expressing those concerns. There are worries that what the Government call the independent consultee service could cause confusion by becoming a rival to the existing independent advocacy services. Those groups believe that there is no need for two such services, and that is why the amendment that my noble friend and I have tabled would replace all the references in the Bill to independent consultees with "independent advocates". Advocacy services already fulfil the role of independent consultees and make representations to decision-makers. There is no need for a completely new service, with a completely new title to explain what it does.
There is also concern about the restriction of the independent consultee service simply to the unbefriended. If that service is to involve highly trained, skilled and experienced staff, why deny it to those people who have family and friends? Such a service would be particularly useful where there are disputes with families. Those who lack capacity, whether befriended or not, would surely benefit from the expertise of trained advocacy staff. Where the person lacking capacity is befriended, it is envisaged that the advocacy staff would play a complementary role, adding their expertise and training to facilitate the process.
I recognise that an independent advocacy service must not be intrusive or inappropriately interfering in the lives of families and carers. The wording of our amendments may not be perfect, as the Minister will point out, but I am sure that the Government can strike a balance between providing expertly trained advocacy staff who can navigate the way through delicate situations and allowing families and carers to look after a loved one who lacks capacity.
The amendments are entirely consistent with the underlying ethos behind the Bill—it has been outlined again and again throughout our proceedings—as they seek to enable vulnerable adults to make their own decisions. The Government's independent consultee is available only once it has been established that a person lacks capacity, but the experience of the existing independent advocates is that, in many cases, someone is thought to lack capacity but is able to express their views when given the appropriate support. The amendment tries to extend the principle of independent advocacy to support people during the process of determining whether they lack capacity, as it will often turn out that they have capacity if given support.
The amendment also seeks to make clear in the Bill that the overriding function of independent advocacy is to support the individual, rather than the decision-maker. I therefore hope that it will commend itself to the Government.
It will be clear from what I said at Second Reading and on the second day of Committee—Official Report,
For that category of people, it is most important not to empower professional carers—including, as I understand them, the independent advocates introduced by the group—against the dedicated and knowledgeable family carers who are usually the best people to take decisions on behalf of their relatives.
I trust that your Lordships will agree that I was supported in that principle by the noble Baronesses, Lady Howarth of Breckland, Lady Knight of Collingtree and Lady Finlay of Llandaff, in Committee on
Foremost among our worries is that considerable disagreement and anguish has been caused in the past when professional carers sought to impose their own agenda against the wishes of family carers who know the person best. Speaking for them—and I am one of them—we certainly would not want independent advocates to be given the powers envisaged in Amendment No. 142. We would be very depressed if independent advocates had to be available,
"to assist P when D is considering doing an act, or making a decision to do an act which will, in any way, affect the care or welfare of P".
Nor would we want an independent advocate to be mandatorily on parade to,
"permit and encourage", our relative,
"to participate or improve his ability to participate as fully as possible in the act proposed to be done or the decision to be made affecting him".
Nor would we want an independent advocate's assistance to express our relative's,
"past and present wishes and feelings, beliefs and values and other factors which he would consider are relevant to the decision or proposed action if he were able to do so".
I could continue further into Amendment No. 142, but I trust that Members of the Committee get the gist. I repeat: I recognise that all of those aims may be laudable for other categories of people covered by the Bill—perhaps the vast majority—but not for the people I represent.
I am aware that there may be a number of noble Lords who doubt whether family carers will always be the best interpreters of their relatives' wishes. Some noble Lords may feel that in some cases, surely, the professionals are likely to know better than the family. I accept that that can happen, especially with less impaired people, who may find that their families are over-protective. Indeed, as I mentioned at Second Reading, we heard articulate evidence of that in our Joint Committee hearings on the Bill. But for the people I represent, I assure your Lordships that it is rare indeed for the family carer to get it wrong and the professional carer to get it right. In support of that contention I would point out that our intellectually impaired people are often open to suggestion, even from people they do not know at all well. It is not easy to get their consistent view on things and it takes time, patience and knowledge to sift the wheat from the chaff.
I should also mention a technique called FAC, facilitated active communication, which was enthusiastically supported by a number of advocacy groups and which purported to be able to ascertain the wishes of people with severe learning disabilities. I understand that a few years ago in Wales, a Professor Fels conducted a number of studies which showed that in every instance, I believe, it was the facilitator's views and opinions which emerged, not those of the individual concerned. So, if you have advocates paid by the local authority or NHS trust, it is likely that the voice which emerges will be theirs.
I have spoken at some length and I fear that my comments will apply in mutatis mutandis to the next two groups of amendments at least. In order that I do not take too much of the time of the Committee and begin to sound too much like a cracked gramophone record, it would be helpful to know if the Minister has taken on board and accepted the burden of my song. It may be that I have misunderstood the position and independent advocates and other professionals will not be able to cut across the wishes of family carers in the way that I fear. It may be that the Minister's letter, when it arrives, will confirm that the code will cater for the point that I and other noble Lords are trying to make.
In short, any firm assurance that the noble Baroness can give this evening would considerably reduce my future contributions to your Lordships' proceedings on the rest of the Bill, which I confirm we otherwise support and for which we are, indeed, grateful.
I rise to speak on behalf of another group with a lack of capacity—adults and older people, in particular—to support the last point of view, but for a different reason. We must be careful and think back to what has been said on several occasions during this debate—that is, the advocate is there to represent the views of an individual who lacks capacity and not to make a judgment on whether those views are correct.
We have said all along that we are promoting the greatest possible capacity to make decisions for the person who lacks capacity. Very often, they may not be the kind of decisions that are welcomed by the advocate. To me, that defines an advocate. Amendment No. 142 gets in the way of the advance decision-making that someone might carry out, and it is not the job of the advocate to come along and assist the person when such a decision has been made in advance. I believe it is the job of the representative given the lasting power of attorney to do that and not the advocate. The advocate is there simply to fight for the right of the person to have his or her views strongly put forward.
Therefore, I think that we are muddling several different things. The noble Lord gave a very moving account of the sort of people whom he represents, and it is a very difficult decision to make. But, even then, there could be times when it is not in that person's best interests always to advise about welfare or care because there could be a conflict of interest. All kinds of things could arise, and I think that we have to be very careful that we do not deny something that we have already said we want.
I want to speak in support of the amendments that propose a change of name. In the Minister's shoes, one might well hesitate over whether it is worth changing a name. One might ask: what does a name matter? Here, I think that it does matter because what the Bill is seeking to achieve in these provisions is at odds with the flavour of the nomenclature. The word "advocate", which has an active sense of someone speaking on behalf of and in defence of another person, has a completely different connotation from the word "consultee", which is essentially passive and carries no sense that there is a person on whose behalf and in whose corner the consultee is acting.
As has already been said by the noble Lord, Lord Alton, advocacy services are already provided by local authorities, as well as through the NHS and other bodies. If we now introduce another brand of advocacy, especially for mentally incapacitated people, I wonder whether the distinction that that will create will serve a useful purpose. The kind of advocacy with which we are dealing here is surely not so very different from any other kind of advocacy. Artificial dividing lines between advocates and independent consultees are unhelpful and probably confusing. I think that that is all the more reason to favour a change of name.
I too confess to having problems with Amendment No. 142. I have considerable sympathy with the points made by my noble friend. I have had several letters from people worried that advocates will be foisted on incapacitated people who have family and friends and have no desire to receive advocacy support. People who are genuinely without anyone to argue their case for them when serious NHS treatment is in prospect or when they are about to move into local authority accommodation are one thing; people who have family and carers who are quite capable of navigating their way through the system on behalf of someone and who do not need advocacy should not be forced to receive it, whether they like it or not. I hope that it is not the Government's intention to allow that, but perhaps the Minister would be kind enough to banish the apprehensions that undoubtedly exist.
It has been a helpful debate. As the noble Baroness, Lady Barker, said, I did commit at Second Reading to consider a name change. I did not table my amendments at this stage because I wanted to have the debate. The noble Earl, Lord Howe, is right: on occasion, one finds that the name that one has, with good intent, given to something is at odds with what people wish that thing to be and with how they view it.
The proposal that we have for the name is "independent mental capacity advocate". That has been discussed with the Making Decisions Alliance, which, as I understand it, liked it well enough. I will reflect on what has been said, but the Committee will appreciate that that is precisely why I did not table the amendments at this stage.
I recognise what is being said about the need not to differentiate too much, except in what the noble Baroness, Lady Barker, said about mental health. In a sense, however, one is always seeking to protect resources as well, and there is an issue about making sure that it is seen as a service.
I want to pick up on another reason. It is important that I spend a short time explaining what we sought to do. I was an enthusiastic advocate for what, I believed, lay behind the proposals from the Department of Health about the independent consultee. Leaving aside the name—I have accepted complete defeat on that—it was, as my honourable friend Rosie Winterton said in another place, concerned with "advocacy-plus". It was designed not only to work alongside individuals to determine their wishes, feelings and desires but, in a sense, to broaden that out to give them access to records, so that they could examine what the decision maker proposed, perhaps visit particular locations, and talk to anybody around the person. This particular group would be unbefriended, but they might live alongside people who knew them a little, and there would be professionals working with them. It was designed to help in the development of greater knowledge about the situation, in order to give advice to the decision maker.
We believed that what we were creating was something more. Training would be offered to those individuals, many of whom would be advocates. I accept that we would be building on a core group of highly experienced people with high levels of skill. They would be asked to do a job that went further than that traditionally associated with advocacy.
Having said that, I accept that noble Lords rightly want to see the emphasis in the definition of the role put on what noble Lords present and I would understand as an advocacy role. I think that noble Lords would accept that, outside the House, there are differing views of what "advocacy" means. In the health service, I met many different groups of people who were advocates but who performed quite different roles, even if the core was the same.
I would not want the Committee to feel that, in developing the service and the proposals that we had, we were doing anything other than trying to build a better service. I hope that, when I table the amendments on the name and look to amend the role, we will not lose everything about those proposals. I do not think that it is about corruption, the word that the noble Baroness, Lady Barker, used—far from it. It is something that I think is truly exciting. I hope that, between now and Report, noble Lords will reflect on the way that I have described the service, so that we can have the opportunity to discuss whether what I have said about what we sought to do has any merit. It is important and potentially quite exciting. I will change the name, and I will table amendments relating to the role. I have no difficulty with that, but I ask noble Lords to consider what I have said too.
The third set of issues was raised by the noble Baroness, Lady Greengross, and the noble Lord, Lord Pearson, and it was about how we develop this service. The noble Lord was absolutely right to raise the question; I have owed him a letter for a few days only. That is not because I have been tardy, but the weekend got in the way and I was on government business for most of it, so I could not have signed a letter anyway.
I say to noble Lords, and particularly to the noble Lord, Lord Alton, that there is no question of us wishing to do anything other than to extend this service. We estimate that we have about £6.5 million available, and that the group of people who are unbefriended is about 20 per cent of those who lack capacity. We want to expand the service and to use the other half of the money to expand the group. Of course, we are always searching for more resources.
We will expand the service through the regulation-making power in the Bill precisely because we want to have dialogue with those most closely involved with individuals, groups and organisations who feel very strongly about how we best develop it. The example given by your Lordships is where there are disputes between families. That might be an appropriate way forward. On the other hand, we are very conscious that where a family is working closely with a loved one, supporting him and providing advocacy for him, introducing an independent person who the family has never seen before might get in the way of that. I am not sure that it is the best use of resources, even if it were appropriate. I am sure that it would be inappropriate for many families. That is not what we want to do.
None the less, there are people who are not technically unbefriended, or who have relatives, but who are unsupported. There are also families comprising an elderly couple struggling to know what to do when one of them has a degenerative disease and is losing capacity. An elderly partner is desperately trying to work out how best to support the other partner. It is an absolute commitment on our part to expand the group and to work with the organisations which have the greatest expertise in this area. We want to expand the group in the right way to protect and support the most vulnerable and to cover as many of those people as we can, while not getting in the way of families who are perfectly able to support their relatives.
I shall leave my comments there because there are other elements in these amendments. Those were the areas on which noble Lords focused and I hope that I have given a sufficient answer to enable the noble Baroness to withdraw her amendment.
Listening to what the noble Lord, Lord Pearson, and my noble friend had to say, I think that there is an argument that we have to appreciate and understand families who are giving loving support and who are advocates for those they care for. I would not want my amendments or those of my noble friend to conflict with that in any way. I am happy for continuing discussions to take place about that. Unbefriended people who have incapacity for various reasons or are impaired for other reasons and do not have people like the noble Lord to care for them—the issue that the Minister has just addressed in her response to the debate—raise another set of issues. That is where we need to focus our attention. I hope that between now and Report the Minister will be able to do so.
I thank all noble Lords who have taken part in this debate. I must confess that I have had considerable difficulties. There are some things that I would like to have discussed but I think that they are more properly left to another group of amendments.
However, one thing has become absolutely clear; that is, the need to work out a common definition of advocacy. I am about to do something that I am sure a detail in the Companion states I should not do. I am going to say that in 1993—the date may be wrong—the noble Baroness, Lady Pitkeathley, was a member of a working group which I think was partly sponsored by the IPPR and which came up with a definition of "advocacy". I know that I quoted it in 2001 during the passage of the Health and Social Care Act and I keep coming back to it.
When I talked about corruption, I meant that the Government seem to come up with different approaches to avoid giving a definition of "advocacy" and how it is provided. I was particularly struck when the noble Baroness was talking about advocacy plus. I do not necessarily disagree with what she was saying, but I am not sure that that is what advocates do. Advocacy is a specific function. The noble Baroness was talking about stuff that was way off and in the realms of good practice and good communication, which is the duty of those providing services to or dealing with people who lack capacity. That is not the same as advocacy.
In a way I have tremendous sympathy with what the noble Lord, Lord Pearson of Rannoch, says. I have no doubt that for a great many people who lack capacity the best advocates in the world would be their families. I am not sure that that is the case for all of them. I do not want to have a big fight about a name, I think that it is much more important to establish what the person is there to do and on whose behalf he or she performs that function.
The definition of advocacy to which I referred made it absolutely clear that a person is independent and that it is his or her job to enable somebody who, for whatever reason, lacks capacity to make his or her wishes known. That is what they do; it is as though it were their wishes. That is separate from carrying out all the bits of good practice that the noble Baroness talked about.
I am not sure that we have reached a solution, but I think that the next set of amendments to be introduced by the noble Lord, Lord Rix, may take us closer. I do not think that calling this function advocacy is at all cosmetic. On that note, I beg leave to withdraw the amendment.
I rise to speak to the amendments which were to be moved by my noble friend Lord Adebowale, who unhappily cannot be in his place this evening. The amendments are Amendments Nos. 130, 131, 136, 139, 144, 145, 147, 149, 151, 153, 157, 158, 160, 162 and 186. Noble Lords will note that in theatrical terms my noble friend Lord Adebowale is top of the bill with these amendments, while I am merely the understudy—for the very first time in my life, I hasten to add. I therefore beg my fellow small-part actors to speak any lines in the script which I fluff during my performance.
In my Second Reading speech I called on the Government to rename the independent consultee service, using the word "advocacy". The Minister kindly wrote to me, making clear that the Government were not wedded to the term "independent consultee" and I am delighted to hear officially that this is now to change.
I also realise that much has just been said about advocacy. That has rather shot my fox, or rather the fox of my noble friend Lord Adebowale, but I shall plough on as best I can.
I also made clear in my Second Reading speech that I felt that the funding for independent advocacy under the Bill was woefully inadequate. I need to place clearly on the record the level of disappointment felt by disability rights campaigners who have supported the Bill from day one. I am still hopeful that the Department of Health might be able to find a little more for this vital service.
As I understand it, under the Government's plans for the function and scope of the independent advocacy service—I cannot get it quite right; the independent mental capacity advocacy service, is that right?—of the additional £6.5 million per year in funding, approximately £3.4 million would be earmarked to finance independent advocacy provision for befriended people in a range of situations, with this range of situations to be decided through consultation. I ask the Minister to provide as full an explanation as possible about this consultation process and the type of situations which the Government feel are likely to be covered to assist me and those of your Lordships who are clearly interested in the same subject.
I hope that the Minister will be able to tell us more about the training that independent advocates will need to go through, who will go through such training, how the training will be funded, how national training standards will be maintained and, more generally, how the Government intend to cut and manage the funding cake. Will the money be held and distributed centrally, for example, or will it be given to local authorities to distribute? I certainly believe that the noble Lord, Lord Pearson of Rannoch, has posed a question about family advocates that will be difficult to answer.
Further consideration is needed on whether an independent advocate should be available for befriended people, if one is requested by any of the parties involved, when decisions about serious medical treatment and accommodation are to be made. The amendments today reflect a disability sector that is on the whole being realistic, practical and constructive, as has been the case, I hope, throughout this legislative process. I hope that the Government will accept them or promise to return with their own alternatives on Report. They are precisely what are needed to revitalise support for the Bill throughout the disability sector. I beg to move.
I am a mere member of the chorus on this occasion. I support the amendments, spoken to so ably by the noble Lord, Lord Rix. My name is attached to many of them.
I wish to speak to Amendment No. 186 in particular, which ensures that an advocate can apply to the Court of Protection on behalf of an individual without capacity, without having to seek permission for the application to be heard. The Making Decisions Alliance gives three important reasons for that. The first is the very serious nature of the decisions that people are making; for example, altering where somebody lives.
The Government have managed to drag up from somewhere the awful phrase "the unbefriended"—words fail me. The second reason is that, if the independent advocate remains available only to the so-called "unbefriended", it is far less likely that they will have somebody to make an application to the court on their behalf, including a deputy. By definition they will not have a donee under an LPA. We need not go into the third reason, the Bournewood case, in great detail because the noble Lord, Lord Carter, dealt with it at length recently.
I must say quite strongly that the provision of advocacy only for somebody who has nobody in the world is simply wrong. I have been searching for some weeks for a way to explain the point, and an example suddenly came to me the other day. Some years ago, in the street where I used to live, I was stopped one night by some strangers who asked me whether I knew anything about a neighbour who lived up the road. All I knew was that he had had a stroke and was in hospital. I did not know much more, and subsequently I was very pleased that I did not, because it turned out that they were family members who had suddenly found out about the situation from abroad. They were asking questions because property was involved: the local authority was selling the property to pay for necessary care.
I am not sure whether the definitions of how far "family" goes and those who are "unbefriended" are subtle enough to deal with such situations. It is important that the definitions in the Bill should be sufficiently robust to ensure that people are not abused.
I know that the Minister has placed in the Library a copy of the consultation paper, which is about consultees. I want to ask the questions that the noble Lord, Lord Adebowale, would have asked on that matter. The original aim of the consultation paper was to provide a right for an advocate in the following situations; namely,
"Where the person who lacks capacity has no ascertainable wishes or feelings and is compliant
Where the action to be taken appears to be contrary to the wishes and feelings of the person who lacks capacity
Where there is a dispute".
Is that the absolute extent of the consultation or is there scope for extending advocacy beyond that and beyond the issues of serious medical treatment and changes of accommodation? I could go on at some considerable length, but I will not. I would simply ask the noble Baroness to take those things into consideration when she makes her decisions.
I would like to make one point about when an advocate might be available; that is, when residential or nursing care is paid for by the family, but the local authority is involved in placing the person. Currently, if the advocate is available only for someone who has no befrienders, this provision would not necessarily cover those people. It is very important that they do have an advocate. Very often that is the group who miss out on the advice that they need. Therefore, someone has to plead their cause.
The Minister made it clear that an elderly couple trying very hard to get through the whole establishment, but who do not really know where to go, could do with the help of an advocate. It is too narrow to say that there will be an advocate only when there is no one at all befriending them. In that sort of decision, people need help. They need someone to make their case loud and clear.
I do not wish to put on the same gramophone record again. Of course, I accept what the noble Baroness has just said and what the noble Lord, Lord Alton, said about unbefriended people. Unfortunately, there are unbefriended people, even in the category of those whom I represent.
One accepts that if a genuine advocate can be found for them and can be helpful, that is a thoroughly good thing. In respect of the example that the noble Baroness, Lady Barker, gave of the family that came back from abroad to acquire the assets of someone who was in hospital, I repeat what I said in earlier Committee proceedings. In answer to a point made by the noble Lord, Lord Christopher, I said that the people who I represent are most unlikely to have assets that would attract their less than honourable family members in that way.
I do not want to add to this debate unduly. A tremendously important point was made by the noble Baroness, Lady Greengross. This is an important set of amendments. I have added my name to many of them. I should like to make it clear that I will not move Amendment No. 139.
I know that the Minister is receptive to the thrust of these amendments. It is a question really of how much she will be able to tell us today. But, at the very least, I hope that she will go away with a sense of the importance of those issues.
I say to the noble Earl immediately that I have a real sense of the importance of those issues. In a sense, that is very reassuring. The debates that we are having in the Chamber today are reflected in the debates that I have had with lots of different groups and, indeed, with those who, like me, are struggling to make all this work effectively in a legislative framework.
I should say to the noble Lord, Lord Rix, that if he is the understudy and the noble Baroness, Lady Barker, is the chorus line, God knows what I am. The role I have always fancied is one in film making rather than in the theatre, that of the key grip. I do not know what it is, but I have always thought that I ought to be one.
No, I shall not go that far. Also, to the noble Lord, Lord Pearson, the days of gramophone records are gone. Now it is whether you have your i-tunes downloaded to your iPod. With those comments to prove that I am up to speed, let me turn to the substance of what has been said and try to address the issues raised rather than go through the amendments one by one.
The noble Lord, Lord Rix, is concerned about the funding. I know that he appreciates that the £6.5 million is additional money to the support given through local primary care trusts, health bodies and local authorities to some 800 organisations all over the country. I accept that he would like to see more funding, but I hope that he will accept that this is a substantial increase which needs to be spent wisely and well in order to make the case for more. As I have already indicated, we shall have about half of that money available beyond the initial phase.
I accept completely the points made by the noble Baroness, Lady Barker, about the term "unbefriended". If the noble Baroness or any other noble Lord can come up with a better word that works in law, they may be my guest. I would be delighted to consider it, but this term is the best we could do after a lot of searching. All suggestions will be gratefully received.
I shall come back to the questions on training put to me by the noble Lord, Lord Rix, but in this vein I shall make one or two further points. On many occasions I have discussed at length with the Making Decisions Alliance how to define in the Bill the groups of people who might need help. In a sense the unbefriended, bizarre though the term may be, covers a very clear group. Difficulties arise when one tries to refer to "horrible families", if I may put it that way. There is no way to define them. Equally, when talking about the elderly couple I described who might need support is to confuse them with other elderly couples who do not. So the only reason we have not expanded this in the Bill is that we cannot do so. We have tried; parliamentary counsel has tried, but it does not work without capturing people we would not wish to include or expanding into areas where we are not convinced that the resources would be best used.
However, we are committed to exploring with all those interested and with organisations that have worked for so long to bring forward the Bill the development of this service. Although half of £6.5 million may not seem like very much, it will go a long way to supporting other groups of people. That is an important point.
We are keen to ensure that we build on and support existing advocacy services as well. For example, we are considering whether further guidance should be issued to provide advice to local authorities and the National Health Service to help them work out how they can enhance the independent advocacy services already in place to help deliver what we intend for these groups of people.
We are also looking to support the development of a national framework of standards for advocacy, which would be welcomed by a number of organisations. Indeed, the noble Lord, Lord Rix, has raised the point. We need to look at what that would mean in terms of training and support. We also intend to ensure that the code of practice reflects accurately the expanded groups of people, and that independent advocacy is supported in the most appropriate ways. We are building on services by adding to them and providing support rather than trying to create something so separate and distinct that it does not benefit from the best of what we have already. In my view that would be a foolish waste of resources. This is about trying to develop the service as effectively as possible. I hope that that allays the concerns expressed by the noble Lord, Lord Rix.
I shall look at the work of my noble friend Lady Pitkeathley in defining needs for advocacy. I am sure that it will be extraordinarily helpful. However, I should make it clear that there are many other groups in our society way beyond the scope of this Bill who have advocacy services, so I want to ensure that we get it right. We are keen to ensure that we get the advocacy service right and, as I have indicated, I shall bring forward amendments to do so. This debate will serve to inform those amendments.
I turn to Amendment No. 186, to which the noble Baroness, Lady Barker, referred, and the whole question of permission. As the noble Baroness will know, certain people can apply directly to the court, including of course the person who lacks capacity. I understand what the noble Baroness seeks to achieve with her amendment. The Bill allows us to make the Court of Protection rules that extend the right not to seek permission to other categories of person or types of cases. It will therefore be possible to add independent consultees to the categories of people who do not need permission if, when we work through the practical details, that seems appropriate.
I will commit myself to looking at that issue to see how we will do that. It will not be on the face of the Bill because of the way we will do it. It is back, in part, to my lists question and making sure that we catch people appropriately through the way in which we develop the rules, and we will need to be fairly clear about how we will do it. In the context of the work that we are doing around this, I hope the noble Baroness will leave the matter with me to see what further we can do.
The commitment we make above anything is to develop this very important service in consultation with the organisations with which we have worked closely and with other organisations which have real expertise in this area. This is meant to build on, not detract from; it will also ensure that we support the most vulnerable. I have already indicated the reasons why we have this group defined and other groups not. There is an absolute commitment to this issue and I hope that on that basis noble Lords will feel able to withdraw the amendment.
In order to give the Committee some feel for the scale of the problem, can the Minister give some idea of the number of people who fall into the unbefriended or unsupported group, as it were? I refer to those people who are not in a position to receive the kind of support to which the noble Lord, Lord Pearson of Rannoch, referred earlier, who have loved ones and are supported by their families and friends. Does the Minister have any idea of the numbers involved? What data are there which might help us to have a better idea of how much we need by way of resources and what we need to do in shaping an amendment?
The only figure of which I am certain is that of the number of people we would classify as having issues around lack of capacity, about 20 per cent of whom are unbefriended. So we know that that would be a clear group. As the noble Lord will appreciate, the difficulty with any other group is how we define it. So those who have relatives in theory but not in practice would be one group; and perhaps elderly people where there are issues about how to support them effectively could be another. I am sure that there are organisations which could probably give us a ballpark figure, but it would be an art, not a science.
I appreciate what the noble Lord is saying but one of the reasons for the consultation is to try to identify how we can develop the service to support these groups most effectively.
Sadly, no. My briefing gives 20 per cent but not a figure. I shall of course write to the noble Lord and copy the letter to other noble Lords.
I am advised that there are some 160,000 people with severe and profound learning disabilities in the country at the moment. If the Minister is right—and I have no reason to doubt it—and 20 per cent of them are unbefriended, then in the category I am speaking about alone it comes to some 32,000 people. I do not query the noble Baroness's percentage, but it seems quite high to me that one in five should be unbefriended. If that is so, it gives one the nature and the scale of the tragedy.
I am not sure whether this will enlighten the Committee completely but I hope it will help a little. The assumption is that there will be about 17,000 decisions each year in England and Wales, of which 6,000 will be about serious medical treatment and nearly 11,000 about care moves. That is the assumption built on within the Bill.
However, I should like to set this out in a letter to the noble Lord, Lord Alton, copied to noble Lords, so that it is clear. The noble Lord, Lord Pearson of Rannoch, also has figures about particular groups that we might try to pull together.
I say to the noble Lord, Lord Pearson of Rannoch, that this is not a precise science. Many of the people with a profound intellectual multiple disability, who number about a quarter of a million in this country, have parents struggling at home to give them care 24 hours a day. Those people could do with independent advocacy to support them through all the vicissitudes of benefits, and so on.
There are many people outside that range with an intellectual impairment or a learning disability who live virtually—sometimes totally—on their own. They, too, may well need independent advocacy, even though their family lives two blocks away. They may still need independent advocacy to see them through the vicissitudes of life. I honestly believe that it is like asking how long is a piece of string. If you add to that number all the other people with disabilities who have a mental impairment—an incapacity—you are trying to judge figures which I am not certain will ever add up.
Before the noble Lord, Lord Rix, replies on behalf of the whole group, I should like to take the Minister back to Amendment No. 186. I was a little disappointed that she said we could not add a group of people to a list. We already have a list. Perhaps she will write to me explaining why independent advocates cannot be on it. Will she also explain what would be the effect of enabling independent advocates to go through the kind of processes that we have talked about, such as making applications to the court, if they do not have the same force as the people covered by the Bill?
Rather than take the time of the Committee now, I shall write to the noble Baroness about those matters. It is a question of ensuring that we position this correctly, but I am certain we shall find ourselves in the same place.
I am sorry if this is out of place, but I should like to make one brief point. If there is a lot of publicity about the advocacy service when it is introduced and it is a local service known by the CAB, Age Concern and Mencap, people do not have to use the service although it is introduced by social services and the voluntary sector and is available to them. I am as worried as the noble Lord, Lord Pearson, about what will happen to people who have intellectual impairment when their parents die—not people who have made wonderful plans but those who have not been able to do so. The service needs to be there, with some spare capacity, so that people can have access to it if they feel they need it. They can be helped by the bodies that are now in existence to have access to it so that it is not a frightening service but a welcome one.
The position described by the noble Baroness, Lady Greengross, is where we all want to find ourselves eventually, but we are not there yet by any means. It is important to remember that we are talking about a particular service and particular decisions. That is where we think some of our most vulnerable people need to be supported. I can see where the noble Baroness is going and were the magic wand available, we might all get there faster.
The noble Earl, Lord Howe, said that we would get a sympathetic reaction to our amendments. I am sure that the aura of sympathy and understanding which arose from the Dispatch Box percolated to every corner of your Lordships' House. There is no doubt that the Minister fully understands our concerns, and I am sure that she will take them away and come back on Report with amendments that may assuage our problems—not our guilt, but our worries.
These amendments were moved originally by my noble friend Lord Adebowale. I think that he and the Making Decisions Alliance, which he consulted on these amendments, will want to read what is said in Hansard. I am certain that we shall return to some of these amendments—although I hope that the Government will shoot our fox well in advance—on Report. I beg leave to withdraw the amendment.
Amendments Nos. 143, 146 and 155 seek to broaden the range of circumstances when independent advocates should be available to include befriended people as well as unbefriended people, or perhaps we should say non-supported people. This would be done by removing the restriction in Clauses 35, 36 and 37 that the duty on local authorities and NHS bodies should apply only to "unbefriended" or non-supported people.
Amendment No. 156 seeks to clarify that a vulnerable person, who may be ineligible for support from public funds for their accommodation, would still be able to claim the support of an independent advocate. I believe that such people should still be able to benefit from the independent advocacy service in exactly the same way as others in the same position but with fewer savings. I hope that the Minister will recognise the gap we are trying to close. Talking of gaps, I once again point out that the Bournewood gap would not be closed by this amendment but the appointment of an independent advocate would certainly help to promote swift access to the courts or tribunals for decisions to be made. I beg to move.
If I understood the noble Lord, Lord Rix, correctly, I would, of course, not agree with extending compulsorily the independent advocate service to those who are not unbefriended.
I shall try to find another way of saying what I have already said. I recognise that in all these groups of amendments noble Lords are looking for ways in which we can try to define how we will extend this service. I say at the outset that the Government's ambition is to have good consultation with those who can help us extend the service to the most vulnerable in the most difficult situations. It is my ambition that that is where we begin, not where we end. I believe there is a general agreement in the Committee that we should protect the most vulnerable first and move outwards and onwards to try to capture more and more people.
The difficulty with the amendments is encapsulated in the point made by the noble Lord, Lord Pearson of Rannoch; namely, that the amendments would capture people who would possibly not wish to be captured by them. Further, I am not convinced that at this stage they would constitute the best use of resources. Until we have consulted with others I do not believe that we are in a position to say that a particular group should come next on the list of those who the Government wish to support as opposed to another vulnerable group who might be identified. For that reason, and that reason alone, I resist the amendments but with the commitment I have already given that we shall consult widely—I very much welcome any noble Lord who wishes to participate in that discussion—to see how best we can support those who are in need of that support. Given the spirit of those remarks, I hope that the noble Lord will withdraw the amendment.
Amendment, by leave, withdrawn.
[Amendments Nos. 144 and 145 not moved.]
Clause 35 agreed to.
Clause 36 [Duty of NHS body to seek advice before arranging accommodation]:
[Amendments Nos. 146 to 154 not moved.]
Clause 36 agreed to.
Clause 37 [Duty of local authority to seek advice before arranging accommodation]:
[Amendments Nos. 155 to 162 not moved.]
Clause 37 agreed to.
Clause 38 agreed to.
Clause 39 [Power to adjust role of independent consultee service]:
[Amendments Nos. 163 and 164 not moved.]
Clause 39 agreed to.
Clause 40 [Codes of practice]:
We come to what I consider one of the most important parts of the Bill. It covers one of the most important elements in determining whether the Bill works in practice—the codes of practice.
In preparing to move this amendment, I found myself wondering how many people will see the codes of practice and how many will see the Bill. I rather suspect that thousands and thousands of people who see the codes of practice will never see the Bill. I therefore believe that it is important that we spend a little time on the subject.
I preface all my remarks on the following provisions by repeating the thanks that I gave on Second Reading to the Bill team for giving us a draft code of practice to look at before we considered the Bill. That is very welcome. It has been enormously helpful to see the sorts of information that will be given to professionals—many of whom will only very rarely come into contact in their work with someone who lacks capacity.
The purpose of the amendment is to do something that is very simple but also very important—to ensure that the code of practice is in a format that is accessible to the one person who matters, the person who lacks capacity. I have been enormously impressed throughout our consideration of the Bill at the way in which we have been able to see things such as easy-read versions of the Bill and consultation documents. At times I have found those documents immensely valuable.
I consider it pretty much essential that this provision is passed. We cannot begin telling other people what to do if we are not prepared to do it ourselves. That is why we should adopt this fairly simple but important amendment. I beg to move.
I should like to speak briefly to Amendments Nos. 167 and 168 which are grouped here. These two amendments address closely related issues. My question to the Minister is whether she will consider including within those matters that the Lord Chancellor must include within a code of practice guidance relating to research.
I am surprised to see no mention of research matters within subsection (1) given the degree of sensitivity surrounding them and the fact that the appropriate body as mentioned in Clauses 30 to 32 has not yet been defined in regulations. I should have thought that research ethics committees and other authorising bodies will need and expect guidance on issues relating to research as much as will the researchers themselves. We have already referred to a number of practical, operational issues that cannot be covered in the Bill but which are of great importance in the context of achieving propriety and working within the spirit of the principles contained in Clause 1. I should be grateful if the Minister were able to say that she will consider my amendments in a positive way.
I support this group of amendments, and I have a couple of additional comments to make. The language is of ultimate importance in the setting out of the code. It is also important that the code should be brought to the attention of anyone who is considering appointing a lasting power of attorney so that those people understand the way in which this will work in practice, which will help people to decide what powers they want to give to a LPA. Will the lasting power of attorney instrument draw attention to the code of practice, so that the relevant sections can be read by both the donor and the donee before a lasting power of attorney is drawn up?
Is this the moment to talk about appointees as well? If the appointees stay with the Department for Work and Pensions, will the regulations be changed in any way so that the appointee is bound under the code as if he had been appointed via the Court of Protection? That is important as well.
Given that the code would be so significant in the working of the Act, affirmative resolution is vital, certainly as regards the first edition of the code, prior to the Act coming into force. In practice, codes are not often changed, and this would not be a huge burden on parliamentary time. To debate any changes that are made would enable Parliament to understand how the Act is working, so that it can be changed, or changes can be made to the code, if that is found to be advisable or necessary and if experience has shown that some aspects of the code do not work as intended.
I support Amendment No. 167 proposed by the noble Earl. I know that the noble Baroness dislikes lists, but in the lines of WS Gilbert, she does not have this particular group on her list; she has seven other groups on her list, but she does not have people involved in research. Given the gravity of the debate that we had earlier today and the issues that were raised, the noble Earl is right to draw our attention to this omission, and I hope that when the noble Baroness replies she will be in a position to rectify that.
I shall endeavour to be as positive as I possibly can in the light of the invitation to be so that I felt was in the words of, in particular, the noble Lord, Lord Alton. I say to the noble Baroness, Lady Greengross, that I will not cover affirmative resolution if that is all right, because it is in the next group of amendments. I would be pre-empting, which I am sure is bad parliamentary procedure.
We will produce an accessible version in various formats when we go out to public consultation following Royal Assent. We will make the final code available to people who may lack capacity. It is our intention to work with our stakeholders to ensure that we achieve that successfully. It does not need to be in the Bill because such things are not in Bills, but noble Lords have my firm commitment. The only reason that it has not been produced yet is that we produced a draft code specifically for Parliament at this stage, so that noble Lords would have the opportunity to look at the draft code. I am grateful for what the noble Baroness, Lady Barker, repeated, and to the Bill team who have done a huge amount of work. It would have been impossible and wrong for the Government not to have brought this code forward as part and parcel of this process, and I am grateful that has been recognised. So, we will do it, no question, and we will work closely with people to ensure that we do.
Secondly, there is the issue about who is and who is not on the list. The noble Lord, Lord Alton, is right that this illustrates my problem with lists. We do not have those people on the list because Clause 40(4) lists the people who have a duty to have regard to the code. That includes people acting in a professional capacity. Those involved in medical research in relation to people who lack capacity are acting in a professional capacity. As they will be under the duty, the code will therefore need to provide guidance for them.
The reassurance that I will give is that the final code of practice will contain a chapter on medical research in relation to people who lack capacity. It is absolutely vital that it does. We would have to and will do that. As Members of the Committee have indicated, particularly the noble Baroness, Lady Barker, it will be the code that people read. Terrific though the legislation is, the thousands of people who will need to be aware of what it does will not read it.
I shall be happy to go back to see whether we would add anything by adding another group, if it would help the Committee, but we are back into my problem with lists immediately. The relevant people are covered because they are professionals. I am happy to discuss the matter but, in the mean time, I hope that with the reassurances that I have given the noble Baroness will feel able to withdraw her amendment.
I thank the noble Baroness for that reply, which was helpful. Her point about the place of research in the code of practice is important, and I understand why different formats have not yet been put in place. I beg leave to withdraw the amendment.
In moving Amendment No. 169, I shall speak also to Amendments Nos. 173, 175 and 177. Amendment No. 174 is also in the group but, on looking at it again, it seemed to have got in by some mistake; it serves none of my purposes with the group.
The first purpose of moving the amendment is to raise a discussion of the procedure for issuing the code. Under Clause 41(2), a draft of the code has to be laid before Parliament. It takes effect after 40 days unless, within that time, either House has resolved not to approve it. In effect, that is the equivalent of the negative resolution procedure for adopting statutory instruments. However, the code is not itself a statutory instrument. Why not? After all, it has legal effect. Under Clause 40(4) and (5), someone acting on behalf of the person lacking capacity has to have regard to the code, and so does a court or tribunal. Why not convert the code into a statutory instrument by publishing it as an annexe to an order made by the Lord Chancellor?
As the procedure stands in the Bill, it is distinctly unusual. I recognise that there are precedents for it, such as a code under the Access to Justice Act 1999, which was approved by a parallel procedure corresponding to the affirmative resolution procedure. However, in that case the code was again not a statutory instrument. Having such a structure is confusing. It creates something that is a quasi-statutory instrument that is subject to a similar procedure, but is not quite the same thing. It means, for example, that the code is not published as a statutory instrument. If it were, it would have a statutory instrument number, which would be the simplest way in future to find it because statutory instruments are duly indexed. I am not sure how the code will be indexed so that it can be looked up by someone who wants to find it.
The procedure in the Bill is not unique, but it is unusual and I do not think it desirable. Therefore, Amendments Nos. 169, 173 and 177 would convert the code into something that was a statutory instrument, which would automatically be subject to the negative resolution procedure under Clause 61(2). Will the Minister consider adopting what I believe to be a better procedure?
Amendment No. 175, coupled with consequential Amendment No. 177, deals with a related but different point—is the negative procedure appropriate for the code or should the affirmative resolution procedure apply? That point was made by the noble Baroness, Lady Greengross. It was also examined by the Delegated Powers and Regulatory Reform Committee. A memorandum from the Department for Constitutional Affairs to the Delegated Powers and Regulatory Reform Committee, printed on page 13 of the report of the committee on the Bill, states in relation to the code that:
"A higher level of Parliamentary scrutiny is not considered appropriate given that the draft code must meet the requirements for consultation, set out in clause 40(1)".
The words "clause 40 (1)" is a misprint for Clause 41(1), which was the intended subsection. But the requirements of Clause 41(1) are very flimsy. They require the Lord Chancellor to consult the National Assembly for Wales and such other persons as he considers appropriate. That could be no one at all. The code is of central importance to the Bill, as everyone recognises. It is surprising that the DCA thought that the requirements of Clause 41(1) were adequate to justify the negative procedure and it is more surprising that the Delegated Powers Committee accepted the view of the DCA and did not mention the code in its report.
Amendment No. 175 will require the use of the affirmative procedure—a resolution of each House. That would be the correct procedure, although, in practice, the code has received wide consultation. I accept that the affirmative resolution procedure would be somewhat heavy-handed for the minor revisions of the code which will be necessary from time to time. But the Delegated Powers and Regulatory Reform Committee has proposed a procedure in the past, when I was a member of it, that was accepted on several occasions by the Government, to require the affirmative procedure for the initial publication of the code and to move to the negative procedure for subsequent variations. If that appeals to the Government more than using the affirmative resolution for all variations to the code, as well as the original one, that would be a compromise that I would find acceptable. I beg to move.
I support the spirit of the amendments that the noble Lord, Lord Goodhart, has tabled. In Amendments Nos. 174 and 175 the noble Lord is correct to direct us towards the affirmative procedures as being appropriate in such cases. The codes that we have discussed are of sufficient importance to warrant that level of parliamentary scrutiny and accountability. Anything less than that would send the wrong signal outside your Lordships' House, so I hope that the Minister will be sympathetic to the arguments that the noble Lord has advanced.
I might have known that the noble Lord, Lord Goodhart, would find the mistake in the Bill. I can always rely on the noble Lord to do that and I am grateful to him. I feel a little like saying to your Lordships that I cannot quite win, because I take great note of the Delegated Powers and Regulatory Reform Committee. I was taught when I first became a Minister that it was a committee that I should not only take note of, but to whose requests I should immediately accede. If the committee had asked me to take action on this matter, I would have done so. I also urge noble Lords to accept that the Delegated Powers and Regulatory Reform Committee does a fantastic job. It holds the Government to account on these issues and makes recommendations.
Perhaps I may also say, in a slightly churlish manner at this hour, that we thought very carefully about this matter. It is worth saying that from the Law Commission's earliest draft Bill through to the Joint Scrutiny Committee, no one suggested that we needed to come forward with anything. It was our decision to make some kind of parliamentary scrutiny available. The scrutiny that we put forward was accepted by the Delegated Powers and Regulatory Reform Committee.
The code will be statutory guidance and that is important. As the noble Lord, Lord Goodhart, knows, people will be under a duty to have regard to it. It will be admissible as evidence in relevant court proceedings. So I think that it has great force and that it is an important document.
The critical point is that we are going to consult very widely to ensure that the code is the best that it can be. It will be a living document. I expect it to change, grow and develop because, as time goes on, we shall wish it to do that. Therefore, I would be deeply reluctant to keep bringing it back in any way.
I recognise that those involved in Parliament will want to ensure that we develop the code. I shall be happy to ensure that all the Members of your Lordships' House and another place—well over 100—who have shown an interest in this matter receive copies of the code. I shall also be happy to ensure that they are invited to take part in the consultation. I have no desire to prevent that happening in any way. But, having brought in a procedure that we did not need to introduce and having cleared it with the Delegated Powers and Regulatory Reform Committee, which holds us to account on these issues, I am a little reluctant to bring back the code through the affirmative procedure. The way that we have talked about the consultation and the way that we have put it before Parliament, enabling people to pray against it if they wish to do so, has been right. In that spirit, I ask the noble Lord, Lord Goodhart, to withdraw his amendment.
I am sorry that the noble Baroness did not reply to the first part of my argument—that is, that the code should be brought in formally as a statutory instrument rather than in this alternative way. However, that is a highly technical point which does not appeal to the Minister and it is not one that I shall particularly press.
The second point is one of substance and I am sorry that the noble Baroness has not felt able to be helpful on it. As I well know, the Delegated Powers and Regulatory Reform Committee does excellent work here and it brings independent judgment to these issues. But it cannot always be right and I am grateful to the noble Lord, Lord Alton, and the noble Baroness, Lady Greengross, for supporting me. However wide the consultation, in something as absolutely central to the Bill as this, it is plainly desirable that we use the affirmative procedure—at least for the approval of the initial code, even if not for subsequent variations of it. Therefore, I think that we are likely to bring back this matter for further discussions on Report. Meanwhile, I beg leave to withdraw the amendment.
This is a very fraught and, again, a wholly technical point. Clause 40(3) authorises the Lord Chancellor to delegate the preparation or revision of the code, and I ask why this particular subsection is necessary.
It is a well established general principle that, unless a Minister is required by law to do something personally, he or she can delegate statutory functions to a subordinate. Introducing specific permission to delegate is unnecessary. Further, it may be taken as an indication that in other places the usual power of delegation does not apply. Does it mean, for example, that the Lord Chancellor must draft the Court of Protection rules under Clause 49(1) himself because there is no specific power to delegate that function? Surely it would be best to leave out subsection (3) and avoid that question ever arising. I beg to move.
It is unusual for the Government to find themselves in a position where they want something in the Bill that noble Lords feel may not be necessary. I do not have a specific answer as to why the provision has to be in the Bill, but I think the effect of taking it out would not be what the noble Lord wants.
I take this opportunity to pay tribute to the work of Penny Letts, who, as noble Lords will know well, was the expert adviser to the joint scrutiny committee. Penny also acted as secretary to the Law Society's mental health and disability committee and produced the department's Making Decisions series of booklets. Much of the draft code was produced by Penny Letts, and I know that the noble Lord, Lord Goodhart, and other noble Lords would not want us to be in a position where she could not, if she were so minded—we have not yet asked her—help and participate in that.
The provision exists in order to enable us to involve experts. It is out of no disrespect to officials or to my noble and learned friend the Lord Chancellor on these issues that we would want to do that. The provision is necessary for that reason, but I will find out why it needs to be on the face of the Bill and write to the noble Lord specifically.
I am grateful to the Minister. Once again, this is a wholly technical point. If the Government feel it necessary to keep the provision in the Bill, so be it. It is a small point, but it is worth looking at. It is contrary to the normal practice of drafting to put in a specific power of delegation of this kind. I beg leave to withdraw the amendment.