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moved Amendment No. 38:
Page 7, line 12, leave out from "treatment" to "and" in line 13.
My Lords, in moving Amendment No. 38, I return to a concern that I raised in Committee about the power of veto over life-sustaining treatment that may be held by individuals who act under a lasting power of attorney.
It is, I think, the position of the Government that this power, far from being a threat to patients or a difficulty to doctors, will be beneficial to both. I can well see that in many cases that will be so. An attorney with close knowledge of the patient, looking to the patient's best interests, will be of inestimable help to a treating doctor who may never have met the patient before and may know nothing of his wishes, beliefs and preferences. In very many cases—perhaps the majority—the doctor and attorney will be in agreement about what is in the patient's best interests, and no problem will therefore arise. The problems arise when doctor and attorney are in disagreement.
Both of them are required under the Bill to work in the patient's best interests. But the interpretation of "best interests" is open to difference. What the Bill is saying is that, in the worst case, an attorney with no medical knowledge whatever can take it on himself to gainsay a doctor whose professional advice is that the patient whose life is at stake should receive certain treatment. It might be perfectly possible for the attorney to maintain, with some justification, that his decision to refuse consent was taken in the best interests of P. But the doctor, who had close knowledge and experience of the treatment, might not think that a fair and reasonable view of best interests.
What happens then? The Bill allows the doctor to seek a ruling from the court where there is such disagreement. But let us take the example of a doctor who has no previous knowledge of the patient and who is confronted by an attorney with no medical expertise and articulates his views plausibly and forcefully. Are we going to imagine that every doctor in that position will have the strength of purpose and the degree of self-belief to refer the matter to the court? I find that unlikely. Doctors are professional people, but they are also human. I very much fear that some will be browbeaten into agreeing to a course of action that runs contrary to their better judgment.
The Government's amendment in Clause 4(5) is most welcome; but the fact is that in many situations involving attorneys it will be absolutely impossible for anyone to detect whether the attorney is or is not motivated by a desire to bring about the patient's death. It is quite possible to imagine circumstances where that desire is wrapped up in some extremely plausible-sounding arguments about best interests.
But malign intent on the part of the attorney is not the only issue. I do not think that, as a rule, doctors will want to go beyond a certain point in seeking to persuade an attorney that treatment should be given where the attorney disagrees. Let us imagine that the doctor emphatically insists on his point of view. If the attorney were to acquiesce, reluctantly and against his better judgment, and the treatment goes ahead only for it to result in the patient recovering but then living in a severely disabled state for a long period, we do not need much imagination to see what would then happen. The attorney would be moved to sue the hospital on the grounds that had the doctor not insisted on his view prevailing, the clear adverse outcome for the patient could have been avoided.
If they know that an LPA exists, doctors may therefore be inhibited in some situations from acting in accordance with their professional judgment. One thing this Bill is careful not to do elsewhere is to fetter the clinical freedom and professional judgment of doctors, other than in those cases where the patient himself has expressed a valid and applicable advance decision to refuse treatment. Where there is an LPA, it is not the patient who is refusing treatment; it is his attorney standing in his shoes. That, I suggest, is a very important difference. On every matter other than the giving of life-sustaining treatment, it is a difference that I am prepared to live with because of the undoubted benefits that LPAs will bring. But when it comes to life-sustaining treatment, the pitfalls are in a class of their own.
Here we come back to a point I raised in Committee about the European Convention on Human Rights which the Minister did not properly address at the time. Article 2 of the convention refers to the right to life. The Joint Committee looked at this and found that although Article 2 imposes positive duties on the state to uphold an individual's right to life, a public authority cannot be compelled to impose treatment against a person's express wishes. I have no difficulty with that. Where it is indeed the person's express wishes, there is no problem, but an attorney taking a decision under an LPA is by definition not articulating the person's express wishes. He is exercising his own judgment. The attorney's judgment and the patient's express wishes are not, I suggest, legally on a par. It is as though the Government, in supporting the provision in Clause 11(7)(a), is asking Parliament to accept that in matters of life and death, patient autonomy can be alienated. I do not believe that that is right or possible. It is not good enough to say, as the Minister did in Committee, that the attorney is acting because the donor wishes him to do so. From a human rights perspective, that dodges the issue. In Committee the Minister sought to draw a distinction between court deputies with a power of veto and attorneys with the same power. I suggest that from the human rights point of view, there is no difference. If we remove the power for one, as we are going to do later today, we should remove it for the other.
The problems I have outlined arise from giving an attorney a legal right of veto over life-sustaining treatment as opposed to a legal right to be consulted. I have no difficulty about an attorney being consulted about life-sustaining treatment. That is entirely right and beneficial. But when a patient's life is at stake, the doctor's professional judgment to treat a patient should not be fettered by the veto of a third party.
I should like the Minister to agree to reflect on this issue further. She must understand that I am not attacking or questioning the benefit that will flow from the generality of decision-making under LPAs; indeed, quite the reverse. But it is no accident that in this country and in the civilised world, we place human life and the right to life into a category of its own. The Bill should follow the same principle in the way proposed in this amendment. I beg to move.
My Lords, I strongly support Amendment No. 38, which the noble Earl, Lord Howe, has moved. He is right to see the matter as being of a piece with the debates that we have had about best interests and intention and purposes—all the debates that have flowed through our Committee and Report proceedings. He is absolutely right to draw a distinction between the right of veto and the right of consultation. The amendment is therefore extremely helpful.
It is worth drawing the attention of your Lordships to how the amendment works. Clause 11(7)(a) states that,
"subsection (6)(c) does not authorise the giving or refusing of consent to the carrying out or continuation of life-sustaining treatment, unless the instrument contains express provision to that effect".
"unless the instrument contains express provision to that effect"— would be deleted if the noble Earl's amendment were successful. That is exactly the right way for us to proceed. It is also consistent, as the noble Earl said, with other decisions that your Lordships will probably make later today.
No one should have such powers over life and death vested in them. That is at the heart of the issue, and we are right to be directed into that area. We should also reflect perhaps on some of the abuses to which the provision might lead. It is not that everyone who holds the lasting power of attorney would want to take the life of someone whom they are caring for—no one is suggesting that—but we all know that abuses can take place.
I recall vividly, just before I left another place in 1997, a man coming to see me at a constituency surgery and telling me about his own experience. He was born in Germany and came to Liverpool with his mother after she parted from his father. His father had settled in Holland. The man in question, after the death of his mother, decided he wanted to track down and meet his father. He travelled to Holland only to find that his father was one of the nearly 10,000 people who had had their life taken that year through euthanasia. I think about 5,500 people died through involuntary euthanasia last year in Holland.
The point about that case was that the stepbrother had authorised the euthanasia. The man who had come to my surgery complained that the doctor who had carried out the euthanasia had been one of the beneficiaries. He had been given a highly valued piece of art from the man's father's art collection. The case went all the way through to the judicial authorities in Holland, and a petition was laid before the European courts. Needless to say, it ultimately went into the sands. We should be concerned not to build into legislation in our jurisdiction the opportunity for people to benefit.
Although, as the noble Earl said, doctors are also human—he pointed to the danger of their being brow-beaten—it worries me that, in their humanity, doctors are, like the rest of us, capable of being tempted as well. We must guard against those circumstances. The law could be subverted unless we enact the sort of provision that the noble Earl has laid before us. It is a loophole that needs to be closed, and I hope that your Lordships will do it.
My Lords, will the noble Earl or the Minister enlighten me about what otherwise I see to be the implication of the amendment; that is, that the right to refuse burdensome treatment by means of an advance decision would not be available to people who lacked capacity under this clause? If I could be enlightened about that, I would know what I thought about what was being proposed. The references of the noble Lord, Lord Alton, to a case of euthanasia do not, with great respect, seem to be relevant at all to what the Bill intends.
My Lords, with the leave of the House, perhaps I may answer that. It is certainly not my intention through the amendment to address advance decisions. It relates to lasting powers of attorney, where a person grants a lasting power of attorney to another individual over matters of life and death. It does not relate to advance decisions. The Bill states that, where the power is specifically provided for, the attorney may refuse consent to life-sustaining treatment. My amendment would remove that provision, so that attorneys did not have that power.
I have three points. First, a number of phrases and words that my noble friend used resonated strongly with me. They bear listening to. My noble friend said that his amendment was beneficial to patients and to doctors. I profoundly believe that to be true. Even more importantly, he said that, in the end, no attorney should gainsay any doctor in his decision. If it came to decision-taking, I would accede to a doctor's judgment ahead of the judgment of an attorney. That is why my noble friend's amendment and his gentle request that the Minister reflect on the issue are so important.
I turn to my second point. The removal of the words,
"unless the instrument contains express provision to that effect", from Clause 11(7)(a) would give the doctor the opportunity to override the attorney. If the words remain, an attorney can override that doctor. That strikes me as being bad in principle and bad in practice and not to be in the best interests of doctors and patients.
My third point is in response to the advice, related to this issue, that has been issued by Peter Smith, the Archbishop of Cardiff, who, as the House will know, is chairman of the Department for Christian Responsibility and Citizenship of the Catholic Bishops' Conference of England and Wales. I know that no one in this House would therefore dismiss this as being a Roman Catholic issue. It ain't; it is a general issue of humanity in the increasingly eugenic society in which we exist. The Archbishop, in a letter to Jim Dobbin MP on
"As you know, we have welcomed the Government's amendment to clause 4(5) of the Bill. In our view this provides an important safeguard which, provided the courts interpret it as it is intended, will ensure that doctors, proxies and other third parties are given no authority by the Bill to make decisions with the intention of bringing about a person's death".
So far so good—His Grace the Archbishop is perfectly satisfied. But he continues: "But"—the "but" is very important—
"this amendment still leaves a major gap. It does not cover advance decisions. The clauses dealing with advance decisions, although tightened up, still leave open the possibility that an expressly suicidal advance decision is binding".
As we go through the remaining stages of the Bill, it is important to bear it in mind that those in the Roman Catholic Church and other Churches, and doubtlessly individuals, feel that what the Government have done in good faith so far to amend the Bill—I thank them for that—does not rule out the opportunity of an adverse decision. So, I fully support everything that my noble friend Lord Howe has said.
My Lords, it has fallen to me to speak from these Benches. I am sorry that my noble friend Lady Barker has been called to an important engagement elsewhere and has left me to hold the fort on her behalf.
I will wait with interest to hear what the Minister says, because my initial reaction to the amendment is not entirely favourable. To personalise the issue, I might well say, if I thought that I was at risk of losing capacity, that I wished my wife to have the power to take a decision on my behalf and that I would trust her absolutely to take the decision that, she felt, I would have taken, had I been able to take it. I believe that there would be many cases of that kind. It is obviously something that has to be done with care, and it is absolutely right that if the attorney is to be given power to give or refuse consent to life-sustaining treatment, the power of attorney document should contain an express provision to that effect. But I would not wish the donor of the power of attorney to be placed in a position where he or she could not give to someone whom they wholly trust the power to take a decision on their behalf.
My Lords, this is an important debate. I say immediately to the noble Earl, Lord Howe, that of course I am always committed to reflect on everything that we discuss in your Lordships' House, because it is an important part of ensuring that the Bill goes back to another place in the best possible order. I am very clear about this part of the Bill, and I believe that it would be helpful if I explained precisely what the Bill does and what the position is, so that noble Lords can then reflect on those matters as well, and we can continue the very helpful dialogue that we have had.
I am always mindful of the word "attorney", because it has lots of connotations. In this particular context, it means somebody whom you or I choose, who we believe cares most about us. It could be our husband, wife or partner, our children or our best friend whom we have known all our lives. But it is up to us to make that choice. It is entirely voluntary; no requirement is made on anyone to do it. The noble Lord, Lord Patten, was very clear that if it came to it, he would prefer the doctor to be in control in that situation. That is fine—he need not make a lasting power of attorney. No one is requiring him to do so under the Bill; it is entirely his choice.
For some people, it might be an important choice. There will be people who believe that when it comes to making decisions when they lose capacity—particularly when they are aware that they might lose capacity—they will want somebody whom they love and trust to be in charge. Some people who give that lasting power of attorney will prefer that that attorney should be able to give or refuse consent on treatment necessary to sustain life. They believe that the man or woman to whom they have been married or the child whom they have known all their lives will make the right decision in those circumstances, rather than a doctor who may not know them at all.
There is an interesting issue about the choice that people make. However, the person chosen can do that only if within the power of attorney given to them it is said that they have such a power. So you cannot accidentally give someone lasting power of attorney on life and death decisions; you have to be explicit, under Clause 11(7)(a). The attorney can include conditions or restrictions in that regard, under Clause 11(7)(b), to say that "in these circumstances but not in those" or "this but not that". So we are very clear that it is in the hands of the donor, whether the donor is myself, the noble Lord, Lord Patten, or the noble Earl, Lord Howe, to say, "I wish that person to have this power in these circumstances". Unless it is that express, the power does not exist; when it is that express, it does exist.
Then we get to the situation that some noble Lords fear, when you end up in a position in hospital and there is a conflict between the two people involved. The first thing to say is that the attorney whom you have nominated—your loved one—has a statutory duty to act in the person's best interests. Therefore, we get back into the issue of best interests, in the Bill, very quickly. If a doctor says, "It is my view that we should give this treatment", and the attorney says, "No, I don't want that for them"—the attorney may be saying that for very good reasons, not bad ones, but in any event the attorney says "No"—and the doctor believes that for whatever reason, such a decision is not in the best interests of the patient, the doctor can treat. The Bill is skewed to say, "If in any kind of doubt, treat". Doctors can seek clarification from the court, and they cannot—to answer the noble Earl's question—be sued under those circumstances. One thing that the Bill does is to protect doctors, enabling them to make those decisions in the right way.
To answer the right reverend Prelate, Clause 25(2)(b) is clear that a lasting power of attorney made after an advance decision to give or refuse treatment to which the advance decision relates will make the advance decision invalid. Similarly, if the advance decision is made after the lasting power of attorney, the reverse is true. So timing is everything in that regard.
I add that the provisions are compliant with Article 2, because the attorney is chosen by a competent adult and can act in this Bill only in the best interests of the person. If that is not the case, the courts come into play and treatment is provided meanwhile. Therefore, the measure is compliant with Article 2.
In summary, the provision gives the right to an individual to say, "I want to appoint somebody to have power of attorney for me". That does not relate solely to medical issues, but we are in that area, so let us stick with that. Within that the individual can say, "I can appoint my husband, wife or child to say that at the final end of my life, that person has the right to say whether I should or should not have the treatment. I would choose that person because they know and love me best and that is what I want—and I am allowed to do that". If when we reach that point the doctor believes that there is any activity going on of a rogue nature or believes that the person is misguided, too distressed or whatever else, the doctor can continue to treat and seek the court's view—and no doubt on the way, I hasten to add, other medical opinion. The doctor cannot be sued.
My Lords, I think that is because those words say that you must expressly state your wishes within the lasting power of attorney. If you wish somebody to have power over life-sustaining treatment in the lasting power of attorney, you have to say so absolutely.
To conclude, I believe that we have got the right balance between the right of individuals in our society to appoint someone whom they love and trust to act on their behalf and the right of the medical profession, which very much welcomes this area of the Bill, to be able to say, "That's great—I welcome it very much—but if I am in doubt about the behaviour of this individual, I am covered in law by the right and responsibility to treat while I seek a legal view". I believe that to be the right balance.
Of course, I shall reflect on the matter further, but I hope that noble Lords will feel that that puts the best possible position in this area, and that the noble Earl will feel able to withdraw his amendment.
My Lords, this has been a very good debate and I am grateful to all noble Lords who have spoken. The question that we should have in our minds is, surely: what is to be gained by having this power in the Bill and what is to be lost? To me, the potential losses far outweigh the potential gains. The Minister says that we should allow people to appoint their own attorneys to take life and death decisions, if that is what they want, but we may be in danger of creating a misleading impression if we say that to people in quite those terms.
With regard to life and death decisions, the power in the Bill is essentially one way. An attorney cannot insist on a patient being treated if a doctor is not willing to offer treatment. All that he can do is to refuse consent to treatment which a doctor believes should be given. How responsible is it for us to allow an attorney to have such a power? The vast majority of attorneys will not be medically trained, yet, if the paragraph stands, they will be able to second guess and overrule doctors.
My Lords, I am sorry to interrupt the noble Earl, but what he is saying made me think immediately of a case that is very different but which is quite relevant—the case of Baby Wyatt. In that case, the doctors wished to withdraw treatment for very profound and, I am sure, good clinical reasons, and the family said that they did not want that. You could relate that to the issue of lasting power of attorney.
It would be wrong to suggest a lay person, however good, could insist that the patient had X or Y treatment, because that would be to defy clinical judgment. If a doctor came and said, "I think I would like to take the treatment away now", they would have the right to say, "No; I want to continue with the treatment". That is important, too. Then they would have to go to court to resolve that dispute, too.
My Lords, I am very grateful to the Minister and I will certainly reflect on that point.
If a doctor's professional judgment, nevertheless, is that the patient's life is worth trying to preserve and that the treatment is in the patient's best interests, why should we enable untrained third parties to overrule that judgment by deciding that life is to be brought to an end? What do we think we are protecting the patient from by doing that? As a general rule, I believe, doctors do not strive officiously to keep patients alive. We might have had that fear if the Bill were amended in ways that have been suggested, but not as the Bill stands. How fair is it on doctors to put them in the sort of position I have described? My noble friend Lord Patten made a very good point on that issue. A doctor may welcome the advice of an attorney, but I doubt whether, in a grave matter of this kind, he would wish an attorney to overrule him. Indeed, I think it could put the doctor in an invidious and very stressful position.
I come back to a point I raised earlier. The noble Baroness says that she is satisfied on it, but I am still troubled by it. We are in danger of bamboozling ourselves, I think, into believing that it is somehow all right for patient autonomy over life itself to be alienated. Delegating autonomy in the generality of matters is one thing, but on the right to life, I suggest, it is a step too far.
I do not propose to divide the House today because, having asked the Minister to reflect on the issue, the least I can do is to agree to do the same.
My Lords, I am extremely grateful to my noble friend for giving way. I am not a people's Peer, as he knows; I am a simple Peer. At the moment, I simply do not understand why these words are necessary. I am not asking my noble friend to answer this question—I will go away and reflect, as the Minister has rightly instructed us to do, and as we should do. However, I think there is a substantial chance that if these words remain they will become—when this Bill goes to another place, in the minds of people such as Mr Dobbin, on the Labour Benches, or my right honourable friend Mr Duncan Smith, on the Conservative Benches—a loophole issue.
If this remains, I think that it will remain as a loophole. We will need the most persuasive arguments from the Minister to persuade us that it is not a loophole. I do not know whether my noble friend takes that point.
My Lords, I confess that I have not spoken to honourable Members in another place about this particular issue, although what my noble friend says may well be correct.
moved Amendment No. 39:
Page 7, line 14, at end insert—
"( ) Any registered provider, manager or member of staff of a service registered within the terms of the Care Standards Act 2000 (c. 14) will not be permitted to assume a lasting power of attorney for any person to whom they provide care in a paid capacity."
My Lords, in moving Amendment No. 39—which stands in my name and those of my noble friend Lady Howarth and the noble Baroness, Lady Barker, who is not here—I shall speak also to Amendment No. 49. These amendments touch on issues that we debated in Committee in amendments moved by my noble friend Lady Howarth, on
The amendments would restrict any staff member, manager or owner of a service registered by the Commission for Social Care Inspection from acting as a lasting power of attorney or a court-appointed deputy. I should add that the restriction applies only to paid staff. However, it will apply to all paid staff.
The amendments have the support of CSCI. I understand that Dame Denise Platt raised the issue with the Minister. She certainly raised it personally with me and my colleagues. It also has the support of other bodies with an interest in these matters, such as Age Concern and Action on Elder Abuse, both of which organisations I am involved with.
I believe that the amendments are necessary because, as your Lordships know, we have to clamp down on all potential avenues for abuse in care homes, and especially in domiciliary care services. We have heard about people who have been robbed by their care givers and, worse, about those who have perpetrated these crimes but have got away with it because they were registered as holders of enduring power of attorney or as deputies.
The Registered Homes Act and subsequent legislation has helped to protect people who have had their savings taken by a person with power of attorney. I merely seek reassurance that those safeguards will not be watered down.
By becoming a donee or a deputy, a registered manager, provider or their staff or relatives would gain wide-ranging powers, under Clause 12 and Schedule 2 to the Bill, over finances and property. However, these are precluded by the national minimum standards, and there are other potential loopholes. For example, although a person will have to declare whether he has a criminal record, how will the Public Guardianship Office know if he is on the POVA list? People on that list do not have a criminal record but are deemed unsuitable to work with vulnerable people. I should be grateful to know from the Minister how this loophole can be closed.
We know that the risk of abuse is particularly great in domiciliary care services where abuse can go undetected for much longer from co-workers, family or friends. That is why the restriction on paid staff being an attorney or a deputy makes good sense. We must remember that while friendships may blossom between care staff and the people they look after, at the end of the day we are talking about the necessity of a professional relationship similar to that between teacher and child.
I seek the Minister's reassurance that any relevant codes of practice and guidance issued because of the Bill will meet the national minimum standards and regulations. I hope that the Minister will look sympathetically on these amendments. If she cannot accept the wording that I have brought forward, I hope that she will bring forward her own amendments next week at Third Reading. I beg to move.
My Lords, I rise to support my noble friend Lady Greengross. I do not want to speak to the amendment at length; my noble friend has made the arguments. I simply want to add that it is also a protection for people in care homes and in domiciliary care themselves.
We have focused on those who rob, cheat and cause great distress to people in their care. We should remind ourselves that the majority of people in these services give superb, warm care. That is one of the reasons why we are often tempted to believe that they can fulfil these roles. We do not expect them only to give good, professional care; we expect them to give it with humanity and often with affection. At the same time, they are able to leave at any moment. This is their career and it is their job. They are not friends and relatives of those who are under their care.
Therefore, I think that it is totally inappropriate that they take on the role of attorneys and deputies, for their own protection. I have had to intervene on two occasions and investigate situations where extremely able carers have been tempted because money was easily accessible when they were in difficulties. It ruined their careers and indeed their lives. I think that we also owe it to them to ensure that these temptations are not placed in their way. I therefore support the amendment.
My Lords, in the absence of my noble friend Lady Barker, I rise to confirm our support for this amendment. I entirely agree with the noble Baroness, Lady Howarth, that of course most of the people involved in the caring profession as paid carers act totally honourably and properly, but I think that people in that category would not, as she said, think it appropriate to take office as an attorney. There is undoubtedly here a risk of abuse from people who abuse the considerable powers they have as attorneys. It would be undoubtedly right, and a necessary safeguard, to ensure that paid carers are not eligible to act as attorneys under a lasting power of attorney for the people for whom they care.
My Lords, it is very difficult not to be persuaded by the arguments we have heard, not simply that this amendment is a safeguard, which it certainly is, but that it is also a matter of propriety. I hope that the noble Baroness will be sympathetic.
My Lords, I completely understand the concerns that lie behind the amendment which the noble Baroness moved. Since Committee, we have had productive discussions with the Commission for Social Care Inspection, as I indicated I would. I do not want to rule out the people whom we are discussing completely because we know of a handful of exceptions where the member of staff in question is also related to the person lacking capacity. Therefore, that member of staff was the most appropriate person in these circumstances for a variety of reasons. Those people comprise a very tiny number but they exist. The difficulty with the amendment is that you might rule out such people completely. However, I agree absolutely that as a general rule such appointments should not be made. The code of practice will make that clear.
As the noble Baroness indicated, the national minimum standards for care homes and for domiciliary care provide strong protection in that area and the standards and regulations for adult social care are currently being reviewed and the issue will be taken fully into account. The noble Baroness will also know that the POVA list was designed to ensure that people included in it were not recruited to work as care providers. To achieve precisely what she wants would require fundamental changes to that. We are also considering the recommendations of the Bichard inquiry. One of these proposes that new arrangements might consider these issues more fully. We shall pursue that to ensure that it is dealt with as best it can be. For example, those who work with children or vulnerable adults would be required to be registered. If that scheme is created, it will look at whether donees of lasting powers of attorney and deputies should be brought within it. I believe that would address the point in question.
I do not disagree with the principle of the amendment but I do not want to make it absolute in the Bill. It will be in the code of practice and linked to the national minimum standards to ensure that we provide these safeguards. From our conversations with Denise Platt I believe that that strength of reassurance is precisely what she is looking for. On that basis, I hope that the noble Baroness will withdraw the amendment.
moved Amendments Nos. 42 and 43:
Page 9, line 39, leave out "section" and insert "sections 1 (the principles) and"
Page 10, line 4, leave out from "powers" to end and insert "or impose on him such duties, as it thinks necessary or expedient for giving effect to, or otherwise in connection with,"
On Question, amendments agreed to.
Schedule 2 [Property and affairs: supplementary provisions]:
moved Amendment No. 44:
Page 44, line 27, leave out paragraph 10 and insert—
"10 (1) Any functions which P has as patron of a benefice may be discharged only by a person ("R") appointed by the court.
(2) R must be an individual capable of appointment under section 8(1)(b) of the 1986 Measure (which provides for a individual able to make a declaration of communicant status, a clerk in Holy Orders, etc. to be appointed to discharge a registered patron's functions).
(3) The 1986 Measure applies to R as it applies to an individual appointed by the registered patron of the benefice under section 8(1)(b) or (3) of that Measure to discharge his functions as patron.
(4) "The 1986 Measure" means the Patronage (Benefices) Measure 1986 (No.3)."
My Lords, the noble Lord, Lord Goodhart, said that he was acting on behalf of his noble friend Lady Barker. I believe that when we discussed this issue previously, the opposite applied.
This amendment concerns the Lord Chancellor's function to be exercised by the bishop of the diocese where there is a patron of a benefice and the issue of incapacity arises. The debate that we had in Committee was wide-ranging but the issue before us is quite a narrow one. It is not about the Church's existing patronage system; it is solely about those who can act on behalf of a patron who lacks capacity. Under the present legislation the Lord Chancellor's powers to act on behalf of a patron lacking capacity have a judicial quality. If the Constitutional Reform Bill is enacted, the Lord Chancellor will not be a judge and it would therefore be inadvisable to leave paragraph 10 of Schedule 2 in its current form. Therefore, the Government's amendment transfers the Lord Chancellor's function to a representative appointed by the Court of Protection. The court-appointed representative will have comparable powers to a representative who a registered patron can appoint when he has capacity.
The representative will have to be an individual who is a communicant member of the Church of England or a church in communion with it or a clerk in holy orders. The representative will fulfil the patron's role not only in presenting a priest to a vacant benefice under the Patronage Benefices Measure 1986 but also in performing the other functions of a patron such as acting as a consultee when there is a proposal to suspend presentation under Section 67 of the Pastoral Measures Act 1983. In discharging his or her functions the representative will be subject to the provisions of the 1986 Measure in the same way that a registered patron would be.
Government Amendments Nos. 120, 121 and 125 are minor and consequential amendments. Amendments Nos. 120 and 121 ensure that Clause 63 of the Bill can be used to deal with any difficulties which might arise in connection with specialised categories of patron. Amendment No. 125 clarifies the meaning of power of attorney in the Patronage Benefices Measure 1986 and provides for the court-appointed representative to send the information required under Section 9 of the 1986 Measure to the designated officer of the diocese instead of the incapacitated patron.
These are good amendments which have been discussed fully with the Church of England and meet the needs of all those involved. I beg to move.
My Lords, I am very grateful to the Minister. I raised this matter originally in Committee on the ground that I felt that the Lord Chancellor's ecclesiastical patronage was, independently of anything that may happen under the Constitutional Reform Bill, something of an anomaly. It did not seem suitable to have any provision in this Bill that added to that patronage. I am fully persuaded that the version which the Government have come up with is preferable to my original suggestion that the patronage should rest in the bishop of the diocese. I am entirely happy with these proposals.
moved Amendment No. 46:
Page 12, line 22, leave out from "P" to end of line 25.
My Lords, as the noble Earl has already indicated, in Committee we undertook to bring forward an amendment removing the provision for a deputy to be given powers by the court to refuse consent to life-sustaining treatment in relation to the person lacking capacity.
People were concerned—I share that concern—that a deputy who is not chosen by the person concerned—that is the critical difference so far as I am concerned—should have so significant a power.
This amendment deletes Clause 20(6) and amends Clause 20(5) to provide, quite simply, that:
"A deputy may not refuse consent to the carrying out or continuation of life-sustaining treatment in relation to P".
I hope that this amendment addresses the concern that noble Lords raised and I commend it to the House. I beg to move.
My Lords, this is an extremely important and welcome amendment and I thank the Government for bringing it forward.
moved Amendments Nos. 47 and 48:
Page 12, line 27, leave out "section" and insert "sections 1 (the principles) and"
Page 12, line 43, at end insert—
"( ) But a deputy does more than merely restrain P if he deprives P of his liberty within the meaning of Article 5(1) of the Human Rights Convention (whether or not the deputy is a public authority)."
On Question, amendments agreed to.
[Amendment No. 49 not moved.]
Clause 22 [Powers of court in relation to validity of lasting powers of attorney]:
My Lords, these are technical amendments. Noble Lords will be aware that matters relating to health are generally devolved to England and Wales. The amendments are designed to ensure that regulations and guidance relating to clauses on research can be made by the Secretary of State for Health in England and by the National Assembly for Wales. Clauses 30 to 33 make provision for intrusive research to be lawfully carried out, or in relation to a person who lacks capacity where the research is part of an approved research project, approved by an appropriate body and is carried out in accordance with the conditions set out in Clauses 32 and 33.
Amendment No. 56 provides that the regulations specifying the appropriate body may be made by the appropriate authority instead of by the Secretary of State. Similarly, Amendment No. 61 provides that guidance setting out how a researcher must nominate an external person for consultation if no carer or similar person is available will be issued by the appropriate authority. Amendment No. 57 defines the appropriate authority as being the Secretary of State for Health in England and the National Assembly for Wales in Wales. I beg to move.
moved Amendment No. 57:
Page 17, line 30, at end insert—
"(6) In this section, section 32 and section (Loss of capacity during research project), "appropriate authority" means—
(a) in relation to the carrying out of research in England, the Secretary of State, and
(b) in relation to the carrying out of research in Wales, the National Assembly for Wales."
On Question, amendment agreed to.
Clause 31 [Requirements for approval]:
moved Amendment No. 58:
Page 17, line 36, leave out subsection (2) and insert—
"(2) The research must be connected with—
(a) an impairing condition affecting P, or
(b) its treatment.
(2A) "Impairing condition" means a condition which is (or may be) attributable to, or which causes or contributes to (or may cause or contribute to), the impairment of, or disturbance in the functioning of, the mind or brain."
My Lords, we are bringing the amendments forward in response to considerations that we had in Committee. I am grateful to the noble Earl, Lord Howe, and my noble friend Lord Turnberg, who proposed amendments in Committee intended to clarify one of the key requirements that a research ethics committee must be satisfied with before it approves a research project.
I remind the House of the purpose of the clause and the effect of the amendments. Clause 31 contains the requirements that the appropriate body, which in most cases will be a research ethics committee, must consider before approving research. The researcher must satisfy the research ethics committee that the research relates to the condition the person without capacity has; there are reasonable grounds to believe that there is no alternative research involving only people who can consent; the potential benefit is not disproportionate to the risk; or that the research may benefit others and be of negligible risk and not unduly invasive or restrictive.
Taking the first element, Clause 31(2) is intended to specify that the research must be relevant to the condition the person is in or to the condition—illness, impairment or trauma—that causes that person to lack capacity to consent to the research. We had an interesting debate in Committee, and the amendments brought forward there attempted to clarify how this might be applied to research into matters that were not directly connected to the main cause of the loss of capacity. My noble friend Lord Turnberg sought to address the possibility of research into the failure of bodily systems that might accompany a heart attack, or into the multiple injuries associated with a car accident that had led people to lose consciousness and therefore become incompetent.
We listened carefully to the views put forward then and also those put forward by research organisations. We have already clarified the intention of this clause by an amendment in another place. To refine the concept in the way that we were invited to do has proved difficult, although we have done it: we have laid it out as best we can, and we have met the considerations. We intended to give effect to the Law Commission's recommendation that the research should be linked to a condition with which the person concerned is, or may be, affected.
Amendment No. 58 requires that the research be connected with an "impairing condition" affecting the person without capacity, or its treatment. "Impairing condition" is defined as a condition that is or may be connected, or cause or contribute to, the impairment or disturbance in the functioning of the mind or the brain. The amendment does not significantly affect the practical impact of the research clauses, but rather clarifies their scope. The emphasis is now more clearly on the requirement that the research must be connected to an impairing condition that the person has. It concedes that the relationship between the impairing condition and the impairment of, or disturbance in, the functioning of the mind or brain is sometimes not perfectly understood. It makes it clearer that it may be valid to conduct properly designed research to see whether the condition and the impairment or the disturbance are linked.
The amendment makes it clear that research, for example, to prevent kidney failure in a person in a coma following a car accident or heart attack, as raised by my noble friend, would be permissible if the other safeguards are met. The impairing condition would be the trauma or shock following the sudden crash or heart attack. The research ethics committee would have to be satisfied that there was a good case for believing that the research into kidney failure was connected to the impairing condition, or its treatment. That would be the task of the research group involved. The REC must also take into account all aspects of the requirement for approval in Clauses 31(2) to 31(5).
Amendment No. 59 is on a different point, which further reflects our decisions on the recommendation made by the Joint Committee on Human Rights in its report of
"reasonable grounds for believing that the research would not be as effective if carried out only on . . . persons who have capacity".
In January, the second report concluded in paragraph 4.60 that the use of the phrase "reasonable grounds for believing" was a departure from the international standard applied. It commended to us the approach used in Scotland in the Adults with Incapacity (Scotland) Act 2000, that research of a similar nature cannot be carried out on an adult who is capable in relation to the decision. It placed the emphasis on the word "cannot" because it felt that it was closer to the accepted international standard.
We have taken the Joint Committee's comments to heart, although we do not entirely agree with its conclusions. Nevertheless, we have looked again at the wording of the biomedicine convention. We agree that it is possible to reformulate the requirement in Clause 31(3) in a way that makes that intention clear and comes closer to the view of the Joint Committee. The amendment replaces the former wording to the effect that the research would not be as effective. It now states that there must be reasonable grounds for believing that,
"research of comparable effectiveness cannot be carried out if the project has to be confined to, or relate only to, persons who have capacity to consent".
Noble Lords will agree that it is clearer and stronger in that respect. It is now very close to the wording of the biomedicine convention, which says in Article 17.1 that research of comparable effectiveness cannot be carried out on individuals capable of giving consent. I am pleased to say that we are following our international obligations there.
Amendment No. 63 again was discussed in Committee. I am grateful to the noble Earl, Lord Howe, and the noble Lord, Lord Turnberg, for raising their concerns about the intention of the original wording. It affects what happens when people are to be enrolled in an approved research project. Clause 32 details the steps to be taken to inform and consult carers about whether the person without capacity should join a research project. As noble Lords will be aware, the rule is that a carer, or someone who is nominated under guidance to be consulted, be asked whether the person should begin the research. There is a group of cases that make it more difficult, and those are urgent cases in emergency situations such as trauma care, where it is important to give treatment in the first few minutes.
Noble Lords will know that many research projects are ongoing in the UK, mostly in hospitals, comparing for example better ways of treating heart attacks or head injuries, or finding out what changes the body undergoes after severe infections such as meningitis. We need to find out better ways as research progresses. If the treatments and trials are to take place, we must realise that it is not practicable to undergo the full consultation process required for this type of research.
We have accepted the recommendation in Committee that we should look again at the wording, and our amendment is along the lines that have been suggested. It widens the range of doctors to be consulted about research in an emergency, so that we do not arbitrarily exclude a doctor who is caring for the person already. We want to provide that the doctor who can be consulted may well be a consultant, surgeon or even a GP whose patient suffers a sudden cardiac arrest or goes into septic shock, for example.
If the emergency happens in the community—outside the hospital—it is perfectly possible that a person's GP can be involved and give approval for research to be initiated by, for example, a paramedic attending the person at home. It is important to think that research in such a case may simply be the taking of a blood sample. As I hope is clear, those doctors are usually best placed to advise the researcher, as they are familiar with the patient's medical history. It is important to know that, including any complications. In some cases, they will have discussed the prospect of research with the patient themselves, and know their wishes and feelings.
We have amended the subsection to make it clear that, whatever the doctor's relationship to the person who lacks capacity, the doctor must not be involved in the organisation or conduct of the research project. That was the second element with which noble Lords were concerned. We must avoid potential conflicts of interest where they may be seen as an incentive or other motive to enrol the person in the project, and we have made sure now that that cannot happen. The amendment would rule out a researcher consulting a doctor who might, for example, be organising the research within his or her hospital.
As set out in Clause 31(6), the researcher, in seeking approval from the REC, would have to specify the arrangements for consulting with another doctor. The three amendments clarify and strengthen the Bill and the research arrangements. We are grateful to noble Lords who have enabled the debate and those changes to take place. On that basis, I hope that they will be able to accept our changes in the spirit in which they were made. I beg to move.
My Lords, I am grateful to the Minister for putting in the amendments, which answer all the points raised in our earlier debate. She has explained clearly why they were so important to introduce. I certainly do not need to make the case again and am delighted that they are there.
So far as Amendment No. 63 is concerned, it is clear that anyone directly involved in the research one way or another should not be the person who gives permission for that research. That is entirely rational and sensible. There is the case in which a doctor is also the carer of the patient and happens to be involved in the research. As I understand the amendment it suggests that, because he or she is involved in research, even though they are the doctor in charge of the care they will not be allowed to approve the research. That is entirely right. I commend the amendments.
My Lords, I too thank the Minister very much for the amendments, which address the concerns that we raised in Committee.
My Lords, in Committee, I too raised the issues and brought to noble Lords' attention the Joint Committee's recommendations, the biomedicine convention and conflicts of interest. The Government have gone a long way to addressing a number of those questions, and I am grateful to them for that. When the Minister introduced the amendment, she said that there were no significant discrepancies between our international obligations under the biomedicine convention and the requirements set out in the amendments. What differences exist? Is there something of any kind of significance of which we should be aware before we approve of what are very welcome amendments?
My Lords, I have not got the biomedicine convention in front of me, but I quoted it, using "cannot". Rather than improvise, I will double-check and write to the noble Lord about it. I was also thinking of the words of the Joint Committee on "reasonable grounds for believing". In Committee, we felt that that was a high test rather than a dilution. Again, I put on record that we have kept that form of words, because they are an efficient and high test of probity.
moved Amendment No. 59:
Page 17, line 40, leave out from "that" to end of line 42 and insert "research of comparable effectiveness cannot be carried out if the project has to be confined to, or relate only to, persons who have capacity to consent to taking part in it"
On Question, amendment agreed to.
My Lords, I hope that no one in the House or outside it regrets that we have spent many hours on these clauses. Never before has it been accepted in this country that it is right to have medical experimentation and research on mentally handicapped people without their permission. We are dealing with an extremely serious principle. The hours that have been spent on the matter have certainly not been wasted. I join others who have thanked the Government and the Minister for the changes that have already been made.
Amendment No. 60 was tabled previously by the noble Baroness, Lady Chapman, but was not voted on. It is yet another attempt to ensure that mentally handicapped people get every protection that the Bill will allow. We failed earlier to ensure that research on a subject unable to give consent must be of a nature that should directly benefit the subject. I was sorry about that failure, but my regret does not prevent me still trying to protect a human being who cannot protect himself. Clause 31(4) speaks only of potential benefit, not benefit. It is certain that much of the upcoming research will not benefit the person on whom it is carried out. Let us at least make the tiny improvement that there will be two conditions of research in the subsection, not only one.
I must voice some concern about the weight that noble Lords clearly put on the Council of Europe's biomedicine convention. I have some little experience of the Council of Europe, having served on it for 15 years. I am bound to remind the House that that body is not empowered to make law. We suffer badly enough in all conscience from having European legislation forced on us willy-nilly. I have noted some of the effects of the Council of Europe's judgments to be absurd. For instance, it was agreed that all patients who suffer any reversal in their medical condition—whether kidney failure, a stroke, a heart attack or anything of that nature—must be entitled to compensation when that reversal happens in hospital or under the care of a doctor. I found it appalling that that the principle of "no fault" compensation should be accepted. Although sensible arguments were made against that, the Council of Europe passed it. I hope that it is an edict that we will never accept in this House.
I shall move on to Amendment No. 62, which is grouped with Amendment No. 60. I want to deal with the conditions that are set out in Clause 32. We learn that the person conducting research must find someone upon whom he can call to consult about the person on whom he intends to carry out the research. As the Bill acknowledges, he may well have a problem with that because it should be someone who is engaged in caring for the subject but it cannot be someone who is paid to do that caring.
A large number of potential subjects for research under these clauses will be in homes. Sadly, many of them have no one to look after them except paid carers and no one who is really interested in their welfare. A whole generation of mentally handicapped people were, very sadly, born to mothers who were perhaps over the age of 40, and we all know that that resulted in a large number of mentally handicapped people being born.
I clearly remember being approached by a constituent who was desperately worried about what would happen to her son when she died. She had given her whole life to looking after that child—to her, and to me, he was still a child. She said, "I don't know what's going to happen to him". Of course, what does happen is that the care is extended and, if there is no one to look after the person in question, he is moved into a home or a place where paid carers will look after him. But those people cannot be consulted because they are paid.
So Clause 32, rightly, makes provision for such a case by stating that the researcher, named in the Bill as R, must find someone who is prepared to be consulted—presumably for pay, although I do not know whether that is the case; we have never been told, but presumably it will be a paid job. That opens up other questions such as who will pay. Will it be R, his drug company or the hospital trust, or are we convinced that there are people who will do this difficult job? To do it properly will require time, thought and care. There may be such people—great numbers of them—who are prepared to do the job, but I am not altogether happy about that.
Rightly, the consultee must not be someone connected with the research. But noble Lords should make no mistake that this new research ruling can, and probably will, make large profits for the drug companies. Therefore, the amendment states that we should ensure, as the Bill does not, that the consultee on whom the whole conduct of the research depends must have no connection with the researcher. The Bill states that he must have no connection with the research, and that is right and sensible, but it does not say that he cannot have a close connection with the researcher.
Therefore, it seems to me that the researcher, in looking for someone to consult and give the green light to go ahead with the research, could nominate his wife, girlfriend, cousin, father, uncle or anyone, because there is no provision in the Bill that states specifically that the researcher must not have any connection with a person who is close to him.
I raised this matter on
Repeatedly, Ministers have expressed concern that everything must be done to safeguard potential research subjects. Indeed, I pay tribute to the Government because they have given much thought and care to this point and to ensuring that a great deal of care is taken over this issue. But if this concern, which is widespread and has led to many changes in the Bill, is genuine, we must go this one step further. We must recognise that if the researcher can call upon someone with whom he has a close connection, that will be very partial advice, and that worries me.
Therefore, I hope that the amendment will be considered sympathetically. It makes no attempt whatever to wreck the Bill, and I hope that it will not be described as such. That is far from the case. I am simply trying to give maximum protection to handicapped people, who will be in a very difficult position when the Bill is passed. I beg to move.
My Lords, I want to express my disquiet that the noble Baroness, Lady Knight, persists in describing people with a learning disability as "mentally handicapped". That is now a discarded description. I am also concerned at her assumption that all 1.5 million people in this country with a learning disability do not have the mental capacity to make decisions for themselves. That is untrue and I feel that it should be placed on the record.
My Lords, I assure the noble Lord that that has in no way ever been stated or believed by me. Undoubtedly we are dealing with a situation involving some people who are unable to make judgments for themselves. I have never suggested for a moment that all people with a mental handicap have no possibility of making any decision for themselves.
My Lords, the noble Baroness will remember that she said that we spent a long time on this issue in Committee. She will also remember that the Joint Committee, which I chaired and of which she was a distinguished member, also spent a long time on this subject. Indeed, I am sure that the noble Baroness remembers that she proposed an amendment to the committee's report and she will also remember conversations that we had in which I explained to her exactly how to do so. The amendment was to the effect that people judged to be incapable of making, and unable to make, decisions for themselves should not be used in medical research experimentation. She will also recall that she was not able to convince the committee on that point.
The conclusion that we reached in the committee was that the amendment as drafted would require the research to be of benefit to the person who was the subject of the research and also of general benefit to people with that condition. We took the view that the treatment being researched should be of benefit, and it was put to us by doctors who gave evidence to the committee that they would not carry out such research unless that was the case. That is the essential point.
In considering whether the research would be of direct benefit to the person concerned, it is important to remember the conditions that we gave as examples. Research into some of the conditions would be of benefit to the person involved and other research would not. We mentioned investigating why people with Down's syndrome are at risk of contracting Alzheimer's disease, how best to treat the effects of acute brain injury, how to understand and manage problems such as self-injurious behaviour affecting people with autism, the causes of potentially debilitating mental illnesses, such as schizophrenia, and the best treatments for brain disorders, such as new variant CJD. I list those to show that, in some cases, research might be of benefit to the people involved but, in other cases, it would certainly not be.
We took the view that when people lack the capacity to give consent, they should be involved in medical research only if it is either in their best interests, which is obviously of benefit, or—not "and", as the amendment states—if it is the only method of conducting research into their particular condition and everyone involved with them is satisfied that it is a non-exploitative proposal which will not harm or distress the individual involved. I believe the Bill reflects that view.
Our conclusion was that a clause should be included in the Bill to enable strictly controlled medical research to explore the causes and consequences of mental incapacity and to develop effective treatment for such conditions. This clause must include rigorous protocols to protect incapacitated adults from being exploited or harmed. I think the Bill does just that.
My Lords, perhaps I may follow the words of the noble Lord, Lord Carter, by illustrating two research projects in which I have been involved over the years and which would have been ruled out completely by Amendment No. 60. These were completely painless and non-invasive projects involving simple CAT scans and positron emission tomography scans of patients with Alzheimer's disease.
The safeguards in the Bill are excellent. I have some sympathy with the wish of the noble Baroness, Lady Knight, to have the consultee quite removed from the researcher and I shall be interested to hear the response of the noble Baroness, Lady Andrews, in that regard.
The effect of Amendment No. 60 would be simply to rule out an enormous amount of valuable research. We would not have the benefit of carrying out simple, basic, non-invasive research; it would be ruled out completely by that one change of word.
My Lords, I have added my name to Amendment No. 62, to which the noble Baroness, Lady Murphy, has just referred. I agree with her that the Government need to answer the points made by the noble Baroness, Lady Knight, in relation to that amendment.
I know that the noble friend of the noble Baroness, Lady Andrews—she is just about to resume her place—reminded us at the Committee stage that she has a dislike of lists. However, we have the beginning of a list in Clause 32(3)(a) and (b), and it does not seem unreasonable to me to add a "(c)". The words have no connection of any kind with R and it is the kind of belt and braces provision that should be inserted into the Bill.
The noble Baroness, Lady Knight, is right to remind the House that we are taking awesome decisions in a whole range of areas. This is the first time that the House—perhaps for commendable, but nevertheless controversial, reasons—has allowed subjects who have some kind of disability to be used for tests and trials that might advance medicine but, nevertheless, may not be with the consent of the person concerned. It is quite an important step change from that which we have allowed previously.
Every generation has to guard against these matters. I was recently rereading the debates that occurred in 1913 in regard to a Bill introduced then—the noble Lord, Lord Rix, will be interested in this—which used the words "A Bill dealing with people's mental deficiencies". That Bill sought compulsorily to sterilise disabled people. A conference was called in London of people from all the different political traditions of the day—the noble Lord, Lord Patten, will be interested in this—and that conference was entitled the "Eugenics conference".
It took the redoubtable Mr G.K. Chesterton and his ally, an independent Member of another place, Josiah Wedgwood, to ensure that that legislation was literally blown out of the water. Perhaps it was one of the few good things that happened in 1914, but the legislation went no further.
We can see what has happened in the decades that followed. I shall not refer to events in Germany but in social democratic Sweden, between 1920 and 1970, more than 70,000 people were sterilised against their will. As the noble Baroness, Lady Knight, has rightly reminded us, we have to guard against such eventualities here.
I commended the Government on the previous group of amendments because I believe that they have listened carefully to many of the issues raised by the noble Baroness. Today, and right the way back to the Joint Committee, she has been her usual assiduous self in ensuring that we do not dodge these questions. Ever since we first met in 1979 I have regarded the noble Baroness, Lady Knight, as a person to have on your side, especially if you are in a position where you are at some kind of risk or vulnerable. I say to the noble Lord, Lord Rix, that I know the stands he has taken, both here and in another place, on behalf of disabled people. I congratulate her on doing that. She always shows great tenacity.
We have made a lot of progress in dealing with these issues during our considerations, but I should particularly like to hear the response of the noble Baroness, Lady Andrews, to Amendment No. 62, to which I have added my name. I believe that it is a reasonable request to add this belt and braces provision that the person who may be researched upon should have no connection at all with R.
My Lords, I have several confessions to make. The first is that I have a daughter, aged 50, who is severely handicapped both physically and mentally. She cannot talk; she cannot walk. That is how I happened to become chairman of Mencap and—in spite of the presence of the noble Lord, Lord Rix—I understand that that body is still known, in short, as Mencap. Indeed, the best thing I ever did for Mencap was to get the noble Lord appointed as secretary-general.
I gladly support Amendment No. 60, which has been moved by my noble friend Lady Knight, but I have serious doubts about the drafting of Clause 32. If I may say so, it is in the wrong way improved by the amendment of my noble friend.
I was the only chairman since 1870 of an official committee to advise Parliament how Acts of Parliament should be drafted. At that time there was no question of using the method contained in the Bill of describing a person merely as "R". It is a very strange practice which has had odd results. In fact, the result that we find in Clause 32 is a very odd one indeed.
I know that we are at Report stage—and I confess that I did not intervene at the Committee stage to put this rather fundamental suggestion forward—but we must make our legislation understandable, and therefore legible, to all the hundreds and millions of people in our society who will be bound by it—and they can only be bound by it if they can follow it easily.
I know I am rather old, but I find it strange that Clause 32 starts by stating,
"This section applies if a person"— and then a bracket is opened and in that bracket, in inverted commas, is the letter "R". It is not easy for people to understand, when the letter "R" appears again, exactly what its meaning and effect will be.
I know it is rather late in our consideration of the Bill to make such a proposal but it is never too late to try to get a Bill right. I ask the Government to reconsider at Third Reading the use of the letter "P", which appears earlier in the Bill, and the use of the letter "R", which appears here. The people who have to obey the Bill will find it easier to do so without this kind of strange reference. One could go on, but I shall summarise my view. It is unfortunate, especially in a Bill that affects people who lack mental capacity, to have to find out whether these cross-references—merely capital letters—will be understood well enough to enable people to obey the law.
My Lords, I am sure that the Minister has listened very carefully to what my noble friend Lord Renton said and will pay it due and proper attention. I agree, with respect—as I understand one says in legal circles—with what my noble friend has said.
I want to make three points on the amendments in the name of my noble friend Lady Knight of Collingtree. First, Amendment No. 60 concerns research. I like research. It is good to have research and very often good research is research that fails because it shows that something is not happening. I can see why people wish to have the ability to conduct research and I do not dissent from that at all.
However, I agree with my noble friend in her first amendment, that replacing the word "or" with "and" in the relevant subsection has a double benefit. It gives a double protection in the interests of patients. In the end, I am much more interested in the human being and the patient than I am in research. That is why I support the amendment. We also have to guard against the unimaginable happening, which is another reason why I support the amendment.
My noble friend Lord Alton spoke about the Eugenics Society before the First World War. I did not know about that, as he explained it to the House. One never knows how some of these provisions will be used somewhere down the line. I prefer caution where one is dealing with the rights of individuals who suffer from severe personal difficulties, whether mental or physical.
Secondly, addressing Amendment No. 62, I fully support the insertion of the additional words in the relevant subsection. I would be interested to hear what the Minister has to say about the medico-ethical considerations in relation to the ability of someone to conduct such research to be prepared, as the subsection says, to,
"nominate a person who—
(a) is prepared to be consulted by R"—
I hope my noble friend Lord Renton will forgive me for using that word—
(b) has no connection with the project", without the additional provision of,
"(c) has no connection of any kind with R".
That leads to some difficult issues. I do not want there to be any suggestion that I am criticising the Minister, but this is a very important point and I do not believe that saying this needs to be considered by this or that medical body and that there should be a code of practice fulfils the need that is met very succinctly and accurately by the amendment tabled by my noble friend Lady Knight of Collingtree.
Thirdly, the noble Baroness mentioned that many hours had been spent on this kind of issue. I do not believe that my noble friend has any reason to be apologetic to the House. I have to report to the House a disquieting leak from the Whips' Office in another place. How another place conducts its business is not a matter for this place. Indeed, it is a surprise to me to hear through this leak that the other place is allowing only one hour for the final consideration of this Bill in another place.
Setting aside the fact that leaks like that should not occur from a well conducted Whips' Office—I am sure it would not have happened, under any circumstances, under the benign reign of the noble Lord, Lord Carter—I do not believe that anyone in your Lordships' House should be at all ashamed or apologetic for wishing to look at the issues in full before they return to another place, which will be starved of a second more than 60 minutes when considering the Bill.
My Lords, as the noble Lord has mentioned me, I would say: "If only I had had the chance". If "or" were replaced by "and" in subsection (4), how would research into Alzheimer's disease be conducted? Does he also agree that his fears about eugenics and so on are dealt with in Section 31(5)(b)(ii) which prohibits research that is "unduly invasive or restrictive"?
My Lords, it should be possible to conduct research, but I would always put the interests of patients first in the legal framework surrounding such research. That is why I would wish to see the research that is being carried out into Alzheimer's disease also being intended to provide knowledge for the causes and treatment for the care of persons affected by the same or a similar condition. The noble Lord and I probably take a slightly different view on that.
My Lords, I would like to clear up a point with the noble Lord, Lord Patten, and with my noble friend Lord Alton. Of course, I am aware of the eugenics movement and I am aware that 70,000 people were sterilised in Sweden. My noble friend Lord Alton failed to mention that, at the same time, 75,000 people were sterilised in North America. Is sterilisation seen as research? In my view it is not research; it is sterilisation for social reasons to make it easier for those caring for the woman—generally it is a woman; men are never sterilised—as she is not seen fit to bear babies. I would not consider that truthfully to be research; I would consider that to have been inflicted on those women to make life easier for their carers and the world at large in a social context.
My Lords, I am not sure how we were diverted into eugenics and sterilisation. For all the reasons mentioned by the noble Lord, Lord Rix, I do not believe that is entirely relevant to these two amendments.
"has no connection of any kind with R", sound not unreasonable. I am not sure that that form of words is necessary, nor am I convinced that,
"has no connection with the project", is not sufficient. However, it is sufficiently important to think about and I am interested to know how the Minister will respond to that, because the principle behind what she has said is not unreasonable.
I have some difficulty with regard to Amendment No. 60. I am keen to see "or" rather than "and" because I do not think that all research must necessarily be of potential benefit to P. But the second part of paragraph (a) says,
"without imposing on P a burden that is disproportionate to the potential benefit".
That is an important element. It should never, whether or not it is a benefit to an individual, impose on P a burden that is disproportionate. So in that case the "and" should be there.
It may be that that element of paragraph (a) is covered elsewhere. I do not know; I quickly read through this. However, I think that,
"without imposing on P a burden that is disproportionate to the potential benefit to P", should be an "and" rather than an "or". Although the,
"have the potential to benefit P", should be an "or". So the provision may need splitting up.
My Lords, I do not think that the noble Lord, Lord Patten, answered the question posed by the noble Lord, Lord Carter, about Alzheimer's, which is a crucial example. It may be that it is absolutely vital to conduct research on Alzheimer's disease with a body of Alzheimer's patients, but that there would be no immediate benefit for the Alzheimer's sufferer who is taking part in that research.
If the amendment is agreed to, it would be difficult to see how one could conduct any research on a disease such as Alzheimer's. As I understand the matter, that was the thrust of the example given by the noble Lord, Lord Carter. The noble Lord, Lord Patten, answered it the other way around, but not the way around that I put it.
My Lords, we have had a wide-ranging debate, as we did in Committee, on the ethics and principles of research and how it fits into the Bill, particularly with the concerns raised by the noble Baroness, Lady Knight.
As the noble Lord, Lord Alton, said, the noble Baroness has been assiduous. I wish she were on our side. In fact, I am sure that we are both on the same side on the fundamentals.
I want to start where the noble Baroness started. I think she said, "Never before have we accepted that we can have research on mentally handicapped people". Leaving aside the language, I want to say—and we have said this in some of the correspondence we have had with her—that this is the first time in law that we have attempted to create a clear and proper legal framework around research, as it involves people with mental incapacity. It is a very important and positive step.
If we look back over the past 15 years, the Joint Scrutiny Committee and the Law Commission years ago noted, complained about and called-for improvements to the lack of clarity around research. Traditionally, research has been done under the Medical Research Council guidelines since 1991. We have moved to change and improve that. We did that first in 2004 with the important clinical trials regulations on drug regimes and so on. Now we have done it in relation to research in general. So I know that the whole House welcomes this proper and legal framework.
I am sorry that we do not have the provision as right as we should. I am sure we should have consulted the noble Lord, Lord Renton. By using "P" and "R", we have tried to attempt, perhaps in an over simplistic way, to make the Bill easier to read. Clearly, we do not have that quite right.
The second thing I want to say to the noble Baroness, Lady Knight, is about the Council of Europe. I respect her wide experience on European affairs. The Council of Europe is a very well respected forum to debate consensus of an ethical nature and draft conventions, such as the biomedicine convention. When we sign up, they are binding, inasmuch as any member of state who signs and ratifies a convention must ensure that national laws comply with it. So these are very much in our national interests and in our structures.
I turn to the amendments. I shall restate the purpose of Clause 31 before I deal with the amendment. The purpose of Clause 31 is to define what kind of research can be approved involving people who lack capacity to consent. Subsection (4) states that the research must meet one of two requirements: it must have the potential to benefit the subject of research without imposing a burden that is disproportionate to the benefit—I am grateful to my noble friend Lord Turnberg for emphasising that point; it is extremely important; or it must intend to provide knowledge relevant to the causes, treatment or care of people affected by the same or similar condition.
The amendment would tie the two requirements together in a way that research would be allowed only if it was intended to benefit the patient. It would limit the types of research that could be carried out to that which is not only of benefit, but also to that which is easily demonstrable as being of benefit. It would effectively make impossible research that might indirectly benefit that person or that might benefit other people who have the same condition now or in the future.
So, with respect to the noble Baroness, these are not tiny improvements; they are a significant straitjacket around research in ways that I shall explain in a little more detail.
In Committee, we had the debate prompted by the noble Baroness, Lady Chapman. What I said then and what is important is that research is surrounded by strict safeguards. First, it must entail negligible risk. Secondly, anything done must not significantly interfere with the person's freedom or privacy. Thirdly, it must not be unduly invasive or restrictive. There is then the requirement to consult with the incapacitated person's carer or a nominated person. Then there is the assessment about whether that research itself may be burdensome. That means assessing the level of discomfort and so on. I shall also return to that.
I understand the concerns behind the amendment. The Bill strikes the right balance between the concern of the noble Baroness that those involved are properly and fully protected, and yet that vital research can flourish, so that people with those conditions in five or 10 years' time will be better off, with better care and prospects.
I want to make two points about research. They have been made very well—better than I could—by noble Lords already. Part of the argument revolves around the concept of research designed to generate new knowledge. That is what we call fundamental research. It is the source of research that is furthest away from direct application. The noble Lord, Lord Patten, will know from his experience in the Department of Education how important fundamental research is to all innovation across all sciences. Without it, we make no progress. It is our evidence base for all our science and medicine. The whole point is that we cannot guarantee where and how those benefits occur.
The amendments effectively make research that may indirectly benefit that person or others impossible. We have heard the example of Alzheimer's disease. The noble Baroness will not be thanked if, for example, as a result of the amendment, in 50 years' time we are using the same treatments and technologies to treat heart disease and any forms of brain injury, trauma or stroke, that we are using now. We fully anticipate that our research organisations will be able to take us forward to things that are presently unimaginable. We have learnt more about the brain in the past five years than we have in the past 500 years. We do not want to stop such beneficial research; I am sure that the noble Baroness does not either. Likewise with genetics. Think of the progress that has been made in genetics in the past few years—our understanding, prediction and treatment of family-based disease. We must be very careful about what we are doing.
Our second problem about tying the provision to direct benefits concerns the methodology of research. With the best will in the world, research is now governed—for our safety as consumers—in a way that is rarely able directly to benefit those with the particular condition. New knowledge takes time to be evaluated. It must be safely reviewed by peer review systems, replicated by and compared with other findings and validated. It is only when we have gone through that exhaustive and often international process that we can say what treatment is safe. The lead times vary, of course. In health or social care, we may progress from fundamental research into a new treatment or care pathway in a matter of two or three years. In other forms of research, it may take us a great deal longer.
We have tried not just to surround the process with safeguards as I have described but to reflect that there are rights here to be respected. We, and many others, believe that it is important for people who lack capacity to have the opportunity to contribute, not least as citizens. The Council of Europe Biomedicine Convention states:
"Were such research to be banned altogether, progress in the battles to maintain and improve health and to combat diseases only afflicting children, mentally disabled persons or persons suffering from dementia would become impossible".
The group of people concerned may in the end benefit from this kind of research. When we drew up the Bill, we listened to the advice of the Joint Scrutiny Committee and to the Making Decisions Alliance, which also said that such people should have the right to participate.
I have already referred to the hierarchy of safeguards. There are the safeguards for the people themselves, which mean that they must be listened to and respected if they show any sign of distress, objection or simply not being interested in taking part. The second line of safeguard is the consultative level, both in inviting people to take part and in taking care of them while they are involved in the research project. Thirdly, at organisational level, the whole project, from its inception to conclusion, is validated by a research ethics committee, which keeps the project, its processes and its methodology under constant review, ensuring that the consultation is constantly valid.
On a later amendment, when we will talk about the relationship between the individual and science in society, we will have an extra safeguard to offer. Not only would the amendment not help those who have a right to be involved and who will be able to benefit indirectly, if not immediately, but also we do not want to prejudice the future of research and the benefit of people with a disability.
In Amendment No. 62 the noble Baroness has raised another very important point. We have considered in detail the issue of who is consulted about a person's involvement. Clause 32 deals with the arrangements for seeking agreement for people to take part in a research study once it has been approved. The Bill rightly sets out the importance of consulting those best placed to comment on the likely wishes and views of the person who lacks capacity.
The first thing that a researcher must do is take steps to identify someone who cares for the person and is willing to be consulted. If that is not possible, the researcher must nominate someone else to act as a consultee. The noble Baroness has tried to ensure that that person is not connected to the research project or the researcher.
I shall try to reassure the noble Baroness on that point. I hesitate to say that the amendment is not necessary; rather, her concerns are covered by the Bill. Clause 32(3) states that the person consulted must have,
"no connection with the project".
We are sure that that could be very widely interpreted. It would certainly include someone involved with, or connected to, either the study itself or a member of the research team. It would also cover wider connections, such as someone with a direct link to funding decisions for the study, for example, or who was involved with the research ethics committee.
I am adding to the examples that have already been given. But although the wording is already wide enough to capture these cases, we will in any case spell out in the Secretary of State's guidance, which is foreseen in Clause 32(3), the range of connections that we mean. We will make it clear that that includes a connection to the researcher. Of course we will consult on that, as we will on the guidance as a whole. We will also make it clear that we expect researchers, if in doubt, to err on the side of caution in interpreting the clause—that will be clear to the research ethics committee, too. It is not always possible to spell out in advance, or to anticipate, the sort of issues and incidents that might arise. That is why we must leave ourselves some room to be able to respond and to make judgments based on individual decisions.
For people who have no immediate or obvious person to help them—we have used the term "unbefriended"—we intend to ensure that healthcare providers that host clinical research make arrangements, through the chief executive, to identify a panel of people who could be available to act as a nominated legal representative as relevant to the trials being undertaken in the organisation.
That will obviously be of huge benefit. Only a very small number of people would have neither someone whom they knew nor someone who could come from another source to help and advise them through the process. Where there is nobody, and we have to set up such a panel, we will certainly look at the training for the requirements of the role. We will also monitor the performance of that body to ensure that it operates to the highest standards. It is possible that the clinical ethics committee could take on that role.
A range of individuals employed by an NHS trust or another healthcare organisation could potentially fulfil the role of a legal representative, such as other clinical staff not connected with a trial, social workers or non-executive members of the trust board. That is probably as much detail as I can provide at the moment about the ways in which we are approaching that problem.
In conclusion, Amendment No. 62 proposed by the noble Baroness would cause major problems. Her suggested wording would be practically impossible to interpret. Would working in the same hospital or living in the same street, for example, count as a connection of any kind? It would take us into realms of association that are very difficult to cover and to anticipate. I think that the noble Baroness would accept that point. But I hope—
My Lords, I am grateful to the noble Baroness for giving way. In the spirit of trying to be helpful, perhaps a form of words saying "unknown" or "not known" to the person could be used.
My Lords, I am no parliamentary draftsman, but I can see that that might have exactly the same, if not more, difficulties than the words "of any kind". It is as long as a piece of string. Obviously, in legislation we want to be as clear and as tight as possible.
My Lords, perhaps I may conclude what I was going to say. As it is constructed, the noble Baroness's amendment causes major problems. I hope that what I have said about the nature of the definitions in terms of not being connected, and the protections that we will offer for people who are bereft of friends or connections, will satisfy the noble Baroness that we have addressed her concerns in respect of Amendments Nos. 60 and 62 and that she will feel able to withdraw the amendment.
My Lords, there was something that I forgot to say to the noble Lord. We take the point that he makes. The best that we can do is ensure that those terms are fully and properly explained in the code of practice and the guidance that is offered.
My Lords, it is obviously a matter for great regret that every amendment I put forward is causing huge trouble and would cause even worse if it was in the Bill. Because of what has been said, I stress that I am in no way against research. I want it to go on and to ensure that it does go on.
I must apologise to my noble friend Lord Renton for offending him by adopting the language of the Bill, which I believe is too late to change now.
My Lords, that is a comfort. But, obviously, I have deeply upset the noble Lord, Lord Rix, for which I am sorry. I do not try to upset anyone. I am just trying to give—as I understand Ministers want—as much protection as possible to people who may be used, under those three clauses, for research.
I have listened very carefully; I have particularly taken on board the comments made by the noble Lord, Lord Turnberg, and others, about Amendment No. 60. I am grateful to the noble Baroness for what she said. I think she heralded that some assurance would be put in at some point to cover my worries. The noble Lord, Lord Carter, mentioned not once the amendment that I was trying to move; that is, the researcher must not pick someone who has anything to do with him or her. That was all I was trying to achieve with the amendment. I did not want to elongate the debate.
However, in the light of the noble Baroness's assurance that this point will be covered at least to some extent by inserting an amendment at a later stage, I beg leave to withdraw the amendment.
moved Amendment No. 64:
Page 19, line 25, leave out from "he" to ", or" in line 26 and insert "appears to object (whether by showing signs of resistance or otherwise) except where what is being done is intended to protect him from harm or to reduce or prevent pain or discomfort"
My Lords, these government amendments have once again been tabled in response to arguments put to us in this House. Amendments Nos. 64, 65 and 66 further strengthen the protections around Clause 33 and make it crystal clear that it is the person without capacity who comes first.
Amendment No. 64 is needed to make sure that in respecting any signs of resistance from the person, it is clear that the person's greater health needs must come first. I will come later to Amendment No. 65, which is based on principles that stem from the World Medical Association's Declaration of Helsinki on medical research. It adds a new requirement that the interests of the person must be assumed to outweigh those of science and society. Amendment No. 66 makes it clear that any withdrawal from research does not require beneficial treatment to be halted.
All these amendments are further backed up by government Amendments Nos. 97 and 99 which specifically name researchers as having a duty to have regard to the code of practice. This brings them into line with others named in the Bill. In all, this is a comprehensive package of amendments that reiterates the importance we attach to protecting people who lack capacity.
Turning to the individual amendments, Amendment No. 64 highlights the important issue of how to balance respecting a person's wishes against protecting them from harm. Let me just remind noble Lords that Clause 33 includes the safeguard that if a person objects to something, their objection must be respected. It is very important to make it clear that this amendment is absolutely not intended to and will not weaken that safeguard.
However, in our debate in Committee led by the noble Baroness, Lady Barker, speaking on behalf of the noble Baroness, Lady Finlay, attention was drawn to the issue of preventing harm to patients in very specific circumstances. For example, a patient might make an action, even a reflex movement, as natural as flinching or pulling away before a needle is put in his arm. The way the clause is currently drafted could be interpreted as meaning simply that a researcher could not even act to steady the person's arm. That could lead to a much more harmful effect on the patient, or it could even be interpreted more extensively as meaning that research could not be continued at all in such a situation. That, too, is something we cannot contemplate.
Our concern here is that the clause could be interpreted as encouraging researchers to discard standard safety measures simply because a person without capacity objects to them. That is not our intention.
For the first time, therefore, the clause puts a positive duty on researchers to respect signs of resistance while recognising the fact that a person's greater health needs must come first, and therefore a researcher's duty to protect the patient must come first. That will mean taking an action intended to minimise pain or discomfort.
The amendment highlights a researcher's duty of care and fits well with the broader requirement in Amendment No. 65, that the interests of the person must be assumed to outweigh those of science and society. I am sorry that the noble Lord, Lord Alton, is not in his place because he has championed this issue at each stage of the Bill. In introducing these amendments we are putting beyond doubt the fact that the interests of the person come first.
The noble Lord has repeatedly stressed the importance of adopting language from widely respected international declarations such as the World Medical Association's Declaration of Helsinki. Not only have we put this in the Bill, we also intend to use the code of practice to explain it in more detail. Although it was not possible to accept the noble Lord's precise amendment because it would have introduced an impossibly broad duty of care that would have been unworkable, we are happy to adopt its spirit.
Amendment No. 65 therefore adds the important principle of ethical research to the Bill. It adds to the safeguards already provided in Clause 33 a new requirement that the interests of the person must be assumed to outweigh those of science and society. I am confident that the general duty set out in Section 5 of the 2002 edition of the Declaration of Helsinki will be supported by researchers as the pre-existing principle of ethical research, and which is now enshrined in the Bill. So that is a very positive response, not only to the noble Lord, but also to the Joint Scrutiny Committee, which also recommended that we use the declaration as the framework for the Bill.
Amendment No. 66 would extend the safeguards in Clause 32(6) so that a researcher would not have to stop any treatment if he felt that doing so would create a significant risk to a person's health in cases where the person asked or indicated that he or she no longer wanted to be a part of research. I am grateful to the noble Earl, Lord Howe, and the noble Lord, Lord Kingsland, for proposing the amendment in Committee. We were sympathetic to what they were trying to achieve.
The Bill already contains such a safeguard for cases where a carer objects to a person's involvement. Clause 32(6), for example, allows a researcher to continue treatment in such cases if withdrawal would be detrimental to the person's health. However, as I said in Committee, it makes no sense to have that safeguard for situations where a carer objects to the research, but not the person. Government Amendment No. 66 rectifies the imbalance. In all such situations, the needs of the person come first, and the person can of course be withdrawn from the research project—and not have data recorded about him, for example—but he can continue to receive the treatment.
I turn finally to Amendments Nos. 97 and 99. Again, I am grateful to the noble Earl, Lord Howe, for proposing an amendment that would add research to the list of subjects to be covered by the code of practice. The draft code contains a chapter on research, and the final version will undoubtedly do so. It is an extremely important chapter. It will set out more fully than the Bill can do the detail of when research should or should not be undertaken, and all of the safeguards that will be in place to protect the person lacking capacity.
We have gone a little further than the noble Earl, Lord Howe, suggested in his amendments. We have also placed a duty on researchers to have regard to the code. It is only right that researchers should be in the same position as the independent mental capacity advocates, attorneys, deputies and others in a position of trust.
People acting in a professional capacity or for remuneration are already caught by Clause 40(4). That will usually apply also to researchers, but it is safest to spell it out, as it might not always be clear.
I hope that noble Lords will feel that we have responded as well as we might to the points that were raised in Committee. The amendments strengthen the Bill and extend the protections offered to patients involved. It is to the credit of noble Lords that we have responded to their suggestions in the way that we have. I beg to move.
My Lords, I welcome all the amendments in this group, but particularly Amendments Nos. 66, 97 and 99, which were prompted by concerns that I raised in Committee. I thank the Government for tabling the amendments.
My Lords, those who originally proposed the amendments and the Government are both to be commended, because many people who have had anxieties about this part of the Bill will be reassured by the resounding clarity of the statement that the interests of the person must be assumed to outweigh those of science and society. That will send a real signal of reassurance to many people.
moved Amendments Nos. 65 and 66:
Page 19, line 31, at end insert—
"( ) The interests of the person must be assumed to outweigh those of science and society."
Page 19, line 37, at end insert—
"(5) But neither subsection (3) nor subsection (4) 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."
On Question, amendments agreed to.
moved Amendment No. 67:
After Clause 33, insert the following new clause—
"LOSS OF CAPACITY DURING RESEARCH PROJECT
(1) This section applies where a person ("P")—
(a) has consented to take part in a research project begun before the commencement of section 30, but
(b) before the conclusion of the project, loses capacity to consent to continue to take part in it.
(2) The appropriate authority may by regulations provide that, despite P's loss of capacity, research of a prescribed kind may be carried out on, or in relation to, P if—
(a) the project satisfies prescribed requirements,
(b) any information or material relating to P which is used in the research is of a prescribed description and was obtained before P's loss of capacity, and
(c) the person conducting the project takes in relation to P such steps as may be prescribed for the purpose of protecting him.
(3) The regulations may, in particular,—
(a) make provision about when, for the purposes of the regulations, a project is to be treated as having begun;
(b) include provision similar to any made by section 31, 32 or 33."
My Lords, the amendment proposes a transitional regulation-making power to cover ongoing research and provide for the necessary flexibility in the provisions for approval of research by a research ethics committee, with consultation of carers and additional safeguards. Why do we need transitional regulations? Primarily because it is necessary to smooth the transition for researchers from the current common law position to the new statutory safeguards for research involving those who lose capacity. We need them to avoid stopping ongoing and essential research.
It was clear from our early debates on the concept of material time that there were a range of transitional issues which my noble friend Lord Turnberg and the noble Earl, Lord Howe, were concerned about. Those issues were associated with research ongoing when the Bill comes into force, which we expect to be in April 2007. We already have the flexibility to cater for the majority of those in the ordinary powers for making transitional provisions in Clause 61, but we need to provide for more comprehensive regulation-making powers to cover projects that enrol people with capacity who go on to lose capacity during the research projects. We are aware, as we propose them, that there really must be a smooth transition without stopping research or causing unnecessary bureaucracy for the RECs. The advantage of a regulation-making power is that we can cater for a wider variety of social situations and do so in full consultation with researchers. We can also refine what is in the Bill and the code of practice.
We recognise that some of the specific requirements in Clauses 31 and 33 are intended to protect those who lack capacity at the outset. But that is difficult when there are large, ongoing research studies because there may be no further contact with the participant, it may be difficult to judge at a particular time whether the person lacks capacity, and so on. So the flexibility in the interpretation of safeguards is really very important.
The specific types of research that will fall under these regulations will be those that started before Clause 30 came into effect, those that enrolled people who had capacity and then went on to lose it, and those which involve material and data collected before the onset of incapacity. Concerns were raised in Committee and the noble Lord, Lord Warner, said that he would consider the issue of long-term projects in particular. We have looked back at the debates that we had on the Human Tissue Bill in 2004. The concerns obviously relate to projects that are already under way. Indeed, the research community raised with us the need for clarity on whether, once people enrolled when they had capacity have lost capacity beyond the commencement of the Bill, the researcher must go back to the research ethics committee to seek approval again, and agreement from relatives and carers.
Researchers also need to understand the relationship between common law consent and these provisions. I am happy to make it clear that when Clauses 30 to 33 come into force there will be a statutory regime-making provision for research involving those incapable of consenting to their involvement. A researcher who complies with all the requirements of Clauses 30 to 33 has lawful authority for his actions and should have little to fear in relation to the common law. These are important issues, and we set out in Committee the way in which we feel that the Bill operates.
Let me briefly recap. The Bill applies to intrusive research, which would require consent if the person involved was capable of giving consent. The Bill does not apply to research that is done during temporary incapacity, such as general anaesthesia during surgery, providing that consent was obtained in advance. Consent endures the temporary loss of capacity.
Consent given before the onset of incapacity to a long-term research study also endures. The noble Baroness, Lady Finlay, gave the UK Biobank as an example of such a study. But consent endures up to the point when a person with capacity would be in a position to withhold consent—for example, when another blood sample was required. At that point, the protections of the Bill would apply to the person without capacity, because that person does not have the capacity to withhold consent. That means that if a long-term study such as UK Biobank wished to continue to take samples from those without capacity it would need fresh approval from the REC and to take steps to identify and consult the carers, as required in Clause 32. They will also have to comply with all the safeguards in Clause 33, as we have just debated. So those additional protections are necessary even where consent may have been given before loss of capacity, and consultations with carers are also important.
Other relevant points raised in Committee include how the Bill might dovetail with other relevant legislation and how it might affect a project started before the Bill came into force. My noble friend Lord Warner was mindful of the fact that the Human Tissue Act does not apply to existing holdings of human tissue; that is, those collected before April 2006. It also anticipated the need for regulations that provide for material lawfully obtained from people who lack capacity.
So, with all those considerations in mind, this new clause, after Clause 33, gives a limited transitional regulation-making power that will allow proper time for consultation and reflection on the range of possible situations involving people who lose capacity in the course of a research project. Our aim is to ensure that a research project can continue in relation to samples or data obtained from people before they lost capacity, subject to certain specified safeguards.
The regulations will define what types of research may safely continue to involve people after they lose capacity and what steps will be needed to protect the person in such research. Subsection (1) makes it clear that this power applies only to research projects beginning before the Bill came into force and involving those who consented to take part when they had capacity and who then went on to lose it; for example, people in studies into long-term health. The regulation-making power in subsection (2) allows for regulations made by the appropriate authority to prescribe that research of a prescribed kind may be carried out on or in relation to the person despite his loss of capacity if certain requirements are met. Subsection (2) will also ensure that any information or material obtained meets certain requirements and was obtained before the loss of capacity. Subsection (2)(c) says that the regulations will include specified safeguards to protect the person's interests.
That is further expanded on in subsection (3), which provides the most important safeguard; namely, that the regulations will include safeguards similar to those already set out in Clauses 31, 32 and 33. I make it very clear that the regulations will indeed replicate many of the safeguards set out in Clauses 32 and 33, but with some allowance for altering the precise wording where it is necessary to take account of the need for a smooth transition.
I hope that that is clear. As I indicated in Committee, we do not want to take the regulation-making power as a means of diluting these very important safeguards. That is not our intention at all.
The regulations will require the affirmative procedure, so it will be necessary to seek agreement in both Houses of Parliament. However, I hope that the House accepts that there is a need to clarify the different safeguards that apply to the different types of research project already taking place.
I can also promise the House that we will ensure that the regulations are extensively consulted upon before being laid. We will take the views of research groups, ethics committees and those who speak for people who lack capacity. We will ensure by doing so that we take only minimum powers necessary to avoid stopping research.
It is important also to spell out who the regulations will not affect. As I said, the regulations affect only those who lose capacity in the course of a research project. They will not affect people without capacity who were enrolled in the research project before the Bill—those instances will be covered already by Clauses 30 to 33—and the regulations will not affect researchers who plan to go back to a person who has subsequently lost capacity in order to take more samples or measurements. They do not mean that researchers can evade having to seek agreement from carers for new research and interventions that might fall into the definition of intrusive research. They have to comply with the protections of the Bill.
This is a technical provision. I admit that I have gone through it rather fast. I hope that it has been clear to noble Lords that their concerns have been met. I hope that the noble Lord will feel that the concerns of the research community have been met. We have listened. I can again give the House an assurance that this will not diminish the protections. We have got the balance right between providing necessary protections and avoiding unnecessary bureaucracy. We want a system that respects what people have previously said about their wishes and feelings which they had expressed in their original consent to participate in the research. We are very grateful to people who participate in research. We need their co-operation and participation. I hope that the House will accept that this is a necessary amendment. I beg to move.
My Lords, I wish to say how much I value these government amendments. I am very pleased with them. I know that the research community at large is also very pleased with them. This is, indeed, a listening government. I am delighted to welcome these amendments.
My Lords, I apologise for having had to be absent for much of today's proceedings. However, I also thank the noble Baroness. I thank her, too, for answering the two questions I had jotted down about positive procedures and consultation. I do not think that anyone in this House is under any illusion about how controversial this subject is. I hope that the time period for the consultation will be sufficiently extensive to enable those who have been extremely critical and sceptical of the research provisions in the Bill to make their views known. I firmly believe that this provision, like the others on research, is the best way of proceeding to benefit people who lack capacity and their carers. However, the intent must be shown through an absolutely transparent process. Therefore, I hope that the timetable for consultation will be extensive. That is always my concern with regard to consultation.
moved Amendment No. 68:
Page 19, line 41, leave out from ""independent" to end of line 42 and insert "mental capacity advocates") to be available to represent and support persons to whom acts or decisions proposed under sections 35, 36 and 37 relate"
My Lords, we now move to an issue about which the House was very concerned. I hope that the next groups of amendments that I shall move will demonstrate that we are, indeed, a listening government, as my noble friend said. We have listened to the views of Parliament. We have also listened very carefully to the views of stakeholders. We understand that the current wording requiring the decision-maker to,
"seek advice from an independent consultee as to P's best interests" does not properly reflect the intended role.
These amendments make clear that the role of the IMCA is primarily to support the person lacking capacity, not the decision-maker and does not make best interests judgment. It is important that we get this right because this service for very vulnerable people must be well defined and clearly understood.
It was always our intention that the role of the IMCA is to support the individual by making representations about their wishes, feelings, beliefs and values, at the same time as bringing to the attention of the decision-maker all factors that are relevant to the decision. The IMCA can also challenge the decision-maker on behalf of the person if appropriate. Amendments in another place did not go far enough in making that clear.
The amendments here: systemically remove reference to advising on best interests; make clear it is the decision-maker who decides on best interests; refer instead to the IMCA supporting and representing the person; and set out the intended functions of the IMCA.
We believe that the role goes further than that of traditional advocacy. We have, therefore, given it a distinct name so that we can clearly specify the functions. It is right that the scope of this government-funded service for very vulnerable people should be clearly defined for the purposes of this Bill. I beg to move.
My Lords, I warmly support particularly government Amendment No. 80, and all the associated amendments which change the name and function of what was once the Independent Consultee Service and will now be the Independent Mental Capacity Advocate service.
I am sure that I was not alone in my surprise and— it has to be said—frustration that the Government initially appeared to be sticking with their original plans around the Independent Consultee Service. Like others of your Lordships, I am pleased to say that, as on so much of this Bill, the Government have shown that they are prepared to listen, they are prepared to reflect and they are prepared to change their mind. I think the amendments today show the relationship between the Government, Parliament and stakeholders at its best and I commend the Minister again for her excellent work behind the scenes to find a way forward.
In supporting the Government's approach to public consultation, disability rights campaigners are trusting that the Government, within the recognised budgetary constraints, will in the end deliver what people with impaired capacity want, which is to be empowered to have their own wishes and feelings fully reflected in best interest decisions.
There are 37 major voluntary organisations, many and varied, in the Making Decisions Alliance, among which are Age Concern, the Alzheimer's Society, Help the Aged, the Down's Syndrome Association, Leonard Cheshire, Mencap, Mind, the Motor Neurone Disease Association, Scope, the Stroke Association and many others, all of which wish this Bill to reach the statute book. The amendments today are a clear demonstration that the Government are listening to the disability sector and are serious about delivering on their promise. I stress again how important it is that this vital Bill should reach the statute book as soon as possible.
moved Amendment No. 69:
Page 20, line 1, leave out paragraphs (a) and (b) and insert "as to the appointment of independent mental capacity advocates"
My Lords, the purpose of the amendments in the group is to change the name of the service from "independent consultee" to "independent mental capacity advocate" or IMCA. We have listened to views both within Parliament and of stakeholders. We understand that the name did not reflect the intended function. This amendment, together with the amendments that I have already moved on this, seeks to make it clear that the role is primarily to support the person lacking capacity and not the decision-maker.
We need to keep a specific name rather than simply change it to "independent advocate" to reflect that it is a specific role that goes further than traditional advocacy, and that will avoid confusion. It is also a good way of ensuring that one is able to get the resources that the noble Lord, Lord Rix, spoke of. In commenting on the previous group, the noble Lord was clear about the importance of advocacy. The Government are committed to supporting independent advocacy. In particular, the noble Lord will know about the recently published Prime Minister's Strategy Unit report, Improving the Life Chances of Disabled People, which is the basis on which the Government will seek to support and strengthen advocacy in general.
We have agreed to consult on the idea of supporting existing advocacy services as part of implementing the Bill. It will be possible to issue guidance and advice to local authorities and the NHS, emphasising the value of independent advocacy in helping to deliver the Bill's purposes and expand references to involving independent advocates in the code of practice. I beg to move.
moved Amendments Nos. 70 to 79:
Page 20, line 5, leave out "consultee" and insert "mental capacity advocate"
Page 20, line 7, leave out "consultee" and insert "mental capacity advocate"
Page 20, line 10, leave out from "that" to "by" in line 11 and insert "a person to whom a proposed act or decision relates should, so far as practicable, be represented and supported"
Page 20, line 17, leave out "consultee" and insert "mental capacity advocate"
Page 20, line 18, leave out from "person" to ", and" in line 19 and insert "whom he has been instructed to represent"
Page 20, line 27, leave out "consultee's" and insert "mental capacity advocate's"
Page 20, line 28, after first "section" insert ", section (Functions of independent mental capacity advocates)"
Page 20, line 29, leave out "consultees" and insert "mental capacity advocates"
Page 20, line 31, leave out "consultees" and insert "mental capacity advocates"
Page 20, line 33, leave out subsection (8).
On Question, amendments agreed to.
moved Amendment No. 80:
After Clause 34, insert the following new clause—
"FUNCTIONS OF INDEPENDENT MENTAL CAPACITY ADVOCATES
(1) The appropriate authority may make regulations as to the functions of independent mental capacity advocates.
(2) The regulations may, in particular, make provision requiring an advocate to take such steps as may be prescribed for the purpose of—
(a) providing support to the person whom he has been instructed to represent ("P") so that P may participate as fully as possible in any relevant decision;
(b) obtaining and evaluating relevant information;
(c) ascertaining what P's wishes and feelings would be likely to be, and the beliefs and values that would be likely to influence P, if he had capacity;
(d) ascertaining what alternative courses of action are available in relation to P;
(e) obtaining a further medical opinion where treatment is proposed and the advocate thinks that one should be obtained.
(3) The regulations may also make provision as to circumstances in which the advocate may challenge, or provide assistance for the purpose of challenging, any relevant decision."
On Question, amendment agreed to.
Clause 35 [Duty to seek advice in connection with serious medical treatment]:
moved Amendments Nos. 81 to 83:
Page 20, line 41, leave out "about" and insert "in determining what would be in"
Page 21, line 1, leave out from "must" to end of line 3 and insert "instruct an independent mental capacity advocate to represent P"
Page 21, line 7, leave out subsection (5) and insert—
"(5) The NHS body must, in providing or securing the provision of treatment for P, take into account any information given, or submissions made, by the independent mental capacity advocate."
On Question, amendments agreed to.
Clause 36 [Duty of NHS body to seek advice before arranging accommodation]:
moved Amendments Nos. 84 to 88:
Page 21, line 24, leave out "about" and insert "in determining what would be in"
Page 21, line 27, leave out from "must" to "unless" in line 29 and insert "instruct an independent mental capacity advocate to represent P"
Page 21, line 34, leave out "seek advice from an independent consultee" and insert "instruct an independent mental capacity advocate to represent P"
Page 21, line 42, leave out "seek advice from an independent consultee" and insert "instruct an independent mental capacity advocate to represent P."
Page 21, line 43, leave out subsection (5) and insert—
"(5) The NHS body must, in deciding what arrangements to make for P, take into account any information given, or submissions made, by the independent mental capacity advocate."
On Question, amendments agreed to.
Clause 37 [Duty of local authority to seek advice before arranging accommodation]:
moved Amendments Nos. 89 to 93:
Page 22, line 22, leave out "about" and insert "in determining what would be in"
Page 22, line 31, leave out from "must" to "unless" in line 33 and insert "instruct an independent mental capacity advocate to represent P"
Page 22, line 38, leave out from "not" to "before" and insert "instruct an independent mental capacity advocate to represent P"
Page 22, line 45, leave out "seek advice from an independent consultee" and insert "instruct an independent mental capacity advocate to represent P"
Page 23, line 1, leave out subsection (6) and insert—
"(6) The local authority must, in deciding what arrangements to make for P, take into account any information given, or submissions made, by the independent mental capacity advocate."
On Question, amendments agreed to.
Clause 38 [Exceptions]:
My Lords, we have committed to consult on extending the IMCA service, as it now is, where there is a clear need and consensus within available funds. Clause 39 provides the regulation-making power, and we have made those subject to affirmative resolution. The amendments would create a permissive power to allow local authorities and primary care trusts some discretionary power in deciding when to use the IMCA beyond the minimum requirements.
The Bill currently says that regulations may be drawn up to extend the service to other,
"circumstances . . . in which advice must be sought from an independent consultee".
We want to change the word "must" to "must, or . . . may" for two reasons. First, concerns have been expressed about extending the service compulsorily to situations where there are family members. We agree that that is not necessarily desirable or helpful. It is fair to say that family carers are at the heart of decision-making in many circumstances. We would not wish to get in the middle of that relationship, particularly when we know what a critical and crucial role family members play in supporting their loved ones.
We will ensure that the code of practice refers to the central role at the heart that unpaid carers play, and makes it clear that they will very often be the best people to speak up for the person lacking capacity. In addition, we believe that where people have successful, loving and supportive relationships, the obligatory use of an independent mental capacity advocate would be neither helpful, nor an effective use of resources, frankly. Also, we want to ensure the maximum flexibility to enable us to accommodate all possible outcomes of the consultation on extending the service. Following the consultation, consensus may or may not favour the use of a discretionary power. By tabling the amendment, we are simply allowing for that possibility.
We have received correspondence from family groups concerned that rogue authorities might displace "difficult" family members with an IMCA. We certainly do not intend that the IMCA should be used to displace supportive family members, who have a legitimate role in working with local agencies. Clause 4 places a duty on decision-makers to consult,
"anyone engaged in caring for the person", when determining best interests. We are all aware of the valuable contribution that many families make in the caring process. They are clearly very important carers who are likely to know the person best. I beg to move.
My Lords, I briefly thank the Minister for the amendment and for her introduction of it. I assume that the intention to place family carers at the heart of decision-making would apply also to the amendments that we have just discussed, particularly Amendments Nos. 68 and 72. That said, we shall as usual read her words in Hansard with the attention that they always deserve, but it seems that what she said should be of great comfort to the many thousands of honourable family carers who, too often at the moment, have to fight long and exhausting battles against the serried ranks of officialdom, the agenda of local authorities and so on, to secure what they know is best for their relative.
If those families are indeed to be put at the heart of decision-making by the regulations, as I think that I heard the noble Baroness say, much of that effort and the suffering that goes with it will be alleviated. With the possibility offered by the Bill that family carers can also become deputies, their future should be very much less difficult when the Bill becomes law. On their behalf, I thank the Minister and the Government for the amendment.
My Lords, I very much endorse everything that my noble friend said. The amendment is warmly to be welcomed. However, I want to bring to the Minister's attention a concern raised with me by members of the Mental Incapacity Consultative Forum. It is that the proposed amendment could give a local authority of an autocratic disposition a licence to displace family advocates whom it considered difficult. I have been asked to draw her attention to such a situation—I am sure that it is not intended, if it is an effect of the amendment—and to ask her what safeguards will be put in place to prevent misuse of local discretion and powers of the kind to which I have referred.
My Lords, I want to take the opportunity to ask the noble Baroness something about this amendment to Clause 39. In her introduction to it, she said that it would extend the scope for local authorities and primary care trusts to go beyond what is now the minimum. Am I right to assume from her comments that that is the power that will enable local authorities to extend the independent mental capacity advocacy services to people who are not, in the words of the Bill, "the unbefriended", but who may find themselves caught in an extremely difficult situation—perhaps as a result of their relationships with their families or with organisations such as those that are involved in their care?
Am I right in assuming that she is enabling local authorities to use some judgment if it appears that that may be the right course of action in the best interests of that person? I agree with the noble Lord, Lord Pearson of Rannoch, that, in the majority of cases, family carers will work in the best interests of the person—I have no doubt about that. But even in families where people do not lack capacity, there are tensions and so on and it is always important to have the advocacy service there as a safeguard which, I hope, will not be needed. If my understanding of the noble Baroness's words is right, I very much welcome them.
My Lords, the noble Baroness, Lady Barker, is absolutely right. It is about extending the services to which we are already committed. The phraseology was perhaps less elegant than it might have been. It is right to look at that and do that in consultation, because, as the noble Baroness knows, within the 37 organisations referred to by the noble Lord, Lord Rix, there are slightly differing views. We must ensure that we use the service and the £6.5 million that we have available in the best way we possibly can.
Regarding the point raised by the noble Earl, Lord Howe, it is important that we consult properly and understand all the sensitivities, particularly where local authorities might be seen to be "autocratic", as he suggested. We also recognise that it is important that the appropriate complaints procedures are also used. The noble Earl knows better than I that nowadays, in healthcare that means people can approach the Commission for Healthcare, Audit and Inspection and, finally, the health service ombudsman, with complaints of this nature; and, through social care, ultimately up to the Court of Protection.
So, we are clear that we should use the proper dispute mechanisms that already exist. However, in the consultation, we shall be mindful to ensure that we get this right to capture the people whom we need to support while not getting in the way either of family relationships or, in a sense, supporting authorities to do things that would be unsatisfactory at best. I hope that, on that basis, noble Lords will feel comfortable.
My Lords, with reference to the comments of the noble Baroness, Lady Barker, might it be worth thinking of a mechanism whereby, if an authority or PCT wished to impose an IMCA on a good family with obviously good family care and there was a dispute about that, could that go to the Court of Protection for adjudication? I think that the noble Baroness said that this would happen, anyway.
My Lords, certainly in a social care context it could end up at the Court of Protection, but I was trying to say that there are very well-established dispute resolution procedures that one would go through, because this would be part of that. However, I shall take the noble Lord's comments back to the Department of Health, where this policy belongs, and obtain a letter of clarification for the noble Lord, which might help. They are meant to use those procedures properly and formally in this context.
moved Amendments Nos. 97 to 100:
Page 23, line 32, at end insert—
"(da) for the guidance of persons carrying out research as part of a research project approved for the purposes of this Act (and otherwise with respect to the provisions of sections 30 to 33),"
Page 23, line 33, leave out "consultees" and insert "mental capacity advocates"
Page 24, line 5, at end insert—
"(ba) as a person carrying out research as part of a research project approved for the purposes of this Act (see sections 30 to 33),"
Page 24, line 6, leave out "consultee" and insert "mental capacity advocate"
On Question, amendments agreed to.
Clause 41 [Codes of practice: procedure]:
"The Lord Chancellor must prepare and issue one or more codes of practice".
I think it is common ground in this House that those codes of practice will be of very great importance—indeed, that they are central to the whole process envisaged by the Bill. They will be documents that have legal effect because they have to be taken into account, and they will need very careful preparation. They will no doubt be documents of considerable length when taken all in all and when considering the issues with which the codes have to deal. Clause 40 then provides for the Lord Chancellor from time to time to revise any code. So a distinction is drawn between the preparation and revision of a code.
Clause 41 lays down the procedure. It states:
"Before preparing or revising a code, the Lord Chancellor must consult . . . the National Assembly for Wales, and . . . such other persons as he considers appropriate".
It then goes on to state in subsection (2):
"The Lord Chancellor may not issue a code unless . . . a draft of the code has been laid by him before both Houses of Parliament, and . . . the 40 day period has elapsed without either House resolving not to approve the draft".
So what is envisaged here is something very similar, although not quite identical, to the negative resolution procedure. For documents of such importance as this, that seems to me to be inadequate.
I am aware that the Delegated Powers and Regulatory Reform Committee—of which I was for some years a member and so am familiar with the way in which it works, although I have ceased to be a member—did not recommend that the affirmative resolution procedure should be used. In fact, the committee did not mention Clause 41 at all in its report, but Clause 41 was referred to in the memorandum produced for it by the department. The department said:
"Clause 40 requires the Lord Chancellor to prepare and issue"— it actually says "an issue" but it should be "and issue"—
"a code or codes of practice for the guidance of persons or with respect to matters set out in Clause 40(1). Clause 41 sets out the procedure for issuing and revising any codes of practice. The Lord Chancellor will have to consult with the National Assembly for Wales and other appropriate persons before preparing or revising a code".
It then goes on to say:
"A higher level of parliamentary scrutiny is not considered appropriate, given that the draft code must meet the requirements of consultation set out in Clause 40(1)".
That of course is an obvious error because it should read "Clause 41(1)". But given that, apart from the National Assembly for Wales, the Lord Chancellor is entirely the master of whom he consults on this subject, it does not seem that that, in itself, justifies any reduction in the standard of parliamentary procedure.
Of course, the Delegated Powers and Regulatory Reform Committee does a very good job, but from time to time—as I am aware because we made mistakes from time to time when I was a member—it makes mistakes. That happens, in particular, when no members of the committee are closely familiar with the issues that arise out of the Bill that they are considering. The root of the trouble may well be that the Delegated Powers and Regulatory Reform Committee did not contain anyone who realised, and was able to point out, the great significance of these codes in the context of this Bill.
Therefore, it seems to me appropriate that whenever a code is initially prepared and issued, it should receive the affirmative resolution procedure. Although of course the code could not be amended, it would give an important opportunity for discussion. I believe that matters of this importance should not come into effect without an opportunity for proper parliamentary discussion. It would be inappropriate to say, "Oh well, you can get your discussion if you move a Motion asking the House to resolve not to approve the draft" simply as a way of obtaining a debate.
Any revision may be relatively infrequent and relatively minor. I have therefore drafted the amendments in a way which ensures that it is only when a code of conduct is prepared, as opposed to revised, that the affirmative resolution procedure, or its equivalent, would be necessary. I believe that we should have a guarantee that your Lordships' House will be able to debate the codes when they are prepared and issued. I beg to move.
My Lords, my speaking note states that we do not disagree with the Delegated Powers and Regulatory Reform Committee. We are going to come to a much bigger issue on which we have been discussing matters with that committee. The Government's usual modus operandi is to state that we will do what the committee did or did not recommend, and I do not quite accept that the Delegated Powers and Regulatory Reform Committee might not have had the right people on it at a particular point in a particular Bill. Where could we go with that thought except to say that we will just ignore it? I do not think we should do that.
My main argument with the noble Lord—apart, perhaps, from the desire not to spend even longer debating the issues around the Bill than Parliament already has done—is twofold. First, the code of practice is an important document for the professionals, organisations and families for whom the code of practice and its interpretation is everything but who will not be reading this legislation on a wet Friday afternoon. I am very keen to have the kind of debate and consultation that will ensure that the code of practice is absolutely right.
There is no big surprise in that. In producing the draft code we have made sure that people have received copies and we have been open, honest and straightforward about what it will be. But the amendments seek to provide that the code has validity only if there is discussion in your Lordships' House and another place; that we will have to wait for parliamentary time to do that; and that that is paramount. That is not how I see the issue.
The other argument, as the noble Lord, Lord Goodhart, quite rightly said, is the fact that there will be codes. One of the issues we have discussed throughout the course of the Bill is the specific parts of codes which are relevant to particular people. Whether they be researchers, doctors or family members, the voluntary sector has a huge interest in this.
We could reach a position where we have six or seven codes—I am not suggesting that this will happen, but let us assume for a moment that it does—waiting for parliamentary time, which, as the noble Lord knows, is incredibly difficult to find in your Lordships' House, to debate each code separately. This could take place in a dinner hour when there may be no more—I will be frank about it—than three or four noble Lords in the Chamber to debate it.
So my issue with the amendment is not that I object to coming to your Lordships' House and debating the matter. The negative procedure enables the House to debate the matter if someone feels very strongly that we have got it wrong. But I do not accept the idea that the code will have validity only when it goes through the affirmative process.
I also do not accept that there is a bigger consultation to be had out there. Once we have done that, once we have got a good code and put it through the negative procedure, we can get on with it. That is what I would prefer to do, notwithstanding what the Delegated Powers and Regulatory Reform Committee has said.
In the best possible spirit, I shall resist the amendment. It is not strictly necessary because we have been very open about this matter. Nothing will be introduced that will be a big surprise. As I have already indicated, every single Member of your Lordships' House or another place who has participated or been interested in the Bill will, as is right and proper, receive a copy of the code and be invited to comment on it.
My Lords, before my noble friend sits down, can I ask whether she is willing to add a sentence? I accept entirely what she did about the initial code. It would be helpful to know that there will be wide consultation on supplementary codes. I am sure there will be; I have no doubt in my mind that that will be the case. It would be unbelievable if it were not the case, but it would help to have that confirmed.
My Lords, of course, I am happy to confirm that. As the codes come into being, I am sure that they will need amendment from time to time. That is right and proper. They will be living documents. Of course we would ensure that there was consultation.
My Lords, I am sorry that the Minister feels unable to be helpful on this matter. I find her arguments not particularly convincing. Good as the Delegated Powers and Regulatory Reform Committee is, it is not infallible. This is one occasion when it appears to have made a mistake.
I also feel that time is not a serious problem now that debates on such matters can be taken in the Moses Room. That should make it relatively easy to find time. Although I do not believe that a long period would be necessary, we have had four days in Committee, two days on Report and we have another day, or part of one, to come. It is appropriate that your Lordships' House should have an opportunity, not simply to send the Bill out into the public arena, but to follow it through by having a chance to debate and consider the terms of what will be, as the noble Baroness said, for most people, even more important than the Bill itself. I do not believe that it should pass out of parliamentary oversight altogether.
However, as the Minister knows, I am extremely reluctant to do anything that will cause any further problems to the passage of this extremely important Bill which we very strongly support. Therefore, I do not intend to divide the House on the amendment, either today or at Third Reading. I beg leave to withdraw my amendment.
My Lords, in moving Amendment No. 102A, I shall speak also to Amendment No. 105A. These amendments aim to put in place further safeguards to protect vulnerable people. Specifically, the amendments follow up debates in Committee about improving safeguards between the Office of the Public Guardian and the Department for Work and Pensions. It is about appointees from amendments tabled by the noble Earl, Lord Howe, and the noble Baroness, Lady Barker.
The amendments seek to clarify how information held by the DWP can be made available to the Office of the Public Guardian (OPG) in cases where the powers of an appointee have been revoked because they have not acted in the best interests of the person lacking mental capacity.
At present, the intention is for the DWP to continue to administer appointeeships, but, as we heard in Committee, organisations like Age Concern, for example, believe that it would be better to bring the two systems—DWP appointeeships and the Office of the Public Guardian register—together as that would be more effective, simpler to understand and a better way to protect older people who lack mental capacity from abuse, particularly financial abuse.
I understand why the Minister may say that the Bill is not the right vehicle to do that, and perhaps not at this late stage—perhaps a future DWP Bill might deal with it.
However, these amendments are perhaps a compromise that the Minister could consider accepting. They would require the Office of the Public Guardian (OPG) to hold a register on behalf of the DWP of all the appointeeships. They seek to ensure that appointees, monitored by the DWP, have to follow the code of practice which the Mental Capacity Bill will introduce.
Cross-referencing is important because at present it would be perfectly possible for a person to have his or her appointeeship revoked on the grounds of misspending benefit income and later to become the receiver for someone else. As the noble Earl, Lord Howe, said in Committee, the OPG would not necessarily know of any problems identified by the DWP. The same could also follow for the DWP appointing people who have had their powers revoked by the OPG.
The OPG would be in the position of either investigating cases itself, where the individual is a registered donee or deputy, or informing the DWP of the need to investigate cases of appointeeship. That would give the OPG—the body charged with protecting people who lack capacity—a much fuller picture of cases of abuse. It would also mean that the OPG would be able to cross-reference easily to ensure people whose powers were revoked because of concerns were not put in a similar position with another individual.
The other point relates to monitoring. It is welcome that the DWP recognises that some kind of monitoring system is necessary. That was agreed on
Finally, it is essential that appointees should be required to adhere to the code of practice, in the same way as deputies and lasting power of attorney donees will be required to do. Appointees should know that although they have been appointed to deal with the person's claims and payments for benefits, they should still help the person retain as much control as possible over his or her money and decisions about how he or she wishes to spend it.
All too often appointees make assumptions about the capacity of someone and take control of all the financial aspects of that person's life, which means that the individual has personal decisions made about him or her, perhaps unnecessarily. Many of the appointees, as we have previously said, will be carers of the individuals and as such should be working to the principles of the Bill. However, where the carer has been given the extra responsibility of managing the person's benefits, it would be an excellent opportunity to make clear to him or her that there is a code of practice that should also be followed.
I have been advised by Age Concern that an amendment to the Social Security Claims and Payment Regulations on appointeeship placing a condition on appointees to follow the Mental Capacity Bill's code of practice would be sufficient, thereby ensuring that such people are placed on a par with anyone else who has a donee or a deputy. I beg to move.
My Lords, I support the noble Baroness, Lady Greengross, on these amendments. As she said, they not only provide the Minister with a workable solution but they also reflect what happens in real life.
I was privileged the other week to sit with a representative from the Office of the Public Guardian with some information and advice workers. I have to say that the very clear distinction between what the Office of the Public Guardian can do and the position of older people who have appointees was a distinction that the information and advice workers simply did not recognise. Many of the people they deal with perhaps do have some property and perhaps do come within the remit of the Office of the Public Guardian but may also have benefits as well. Therefore, I think there is a very strong practical case for aligning the two systems.
In Committee, the noble Baroness, Lady Andrews, gave some reassurances about how the DWP was beginning to think about the matter. I was not particularly convinced by her statement, because the DWP appears to be pursuing its own track, which is not particularly aligned with this Bill.
The noble Baroness, Lady Greengross, has come up with a very elegant solution, which I hope the Minister will find favourable. I support it.
My Lords, I hope that the House will allow me to support the noble Baroness, Lady Greengross, in introducing the amendments. I, too, regard them as a very neat way forward. I hope that these amendments or some like them will commend themselves to the Government.
My Lords, I commend the noble Baroness, Lady Greengross, for continuing to work with this matter. As she will know, I arranged for a meeting between the Making Decisions Alliance and Maria Eagle at the DWP to consider this dialogue.
I shall start by saying why I cannot accept the amendment but shall end on a more positive note by explaining what we will do. I hope that that will be helpful, so I ask noble Lords to bear with me during the negative part of my response.
Our biggest difficulty with getting the OPG to register appointees is that there are about 7,500 receivers and 500,000 appointees so it is a very big, impractical step. The MDA, when it wrote to me recently, said that it now thinks it,
"more appropriate for them to continue to be administered by the DWP".
However, the DWP is considering the feasibility of setting up a central register of revoked appointees and one of all appointees. I know that that will be expensive because of the numbers involved, so it cannot happen overnight, but it is actively under consideration and we will work with the department on it.
I understand the point about investigating concerns but the DWP already investigates concerns at how appointees are acting and appointments can be revoked. Again, it would not be practical as things stand to expect the OPG to investigate when there are many more appointees than receivers and deputies.
I shall deal with the more positive aspects. We are trying to develop co-operation between the OPG and the Department for Work and Pensions so that if somebody is contacted via the OPG with a concern about an appointee, the DWP could be asked to investigate. I am sure that that dialogue is already there in part, but those involved in it would want to think about how to make it even better. It is also important to remember the role of social services in that regard.
If a register of appointees is established, we can then look properly at the best way of information-sharing and cross-checking the registers between the OPG and the Department for Work and Pensions. That will be critical; however, I cannot include that in the Bill because we do not yet have the answer to when, how and if it will happen.
I can make the following commitments. We have started to consider with the Department for Work and Pensions how we can work together. It is considering whether it can set up the register that people want, what it would cost, and when it would happen. On the basis that that work will take place, we can ensure that it dovetails with that of the Public Guardian. We can also consider other ways of working together. That is happening now, not least because of pressure as a result of this Bill, which is very helpful. Carrying out checks with each other on a case-by-case basis might be very helpful.
Quite a lot of work is happening. We will work with the department to ensure that the relevant parts of the code of practice are drawn to the attention of all appointees. There is a much closer working relationship but not in a sense that I can express in a Bill. I hope that I have made a commitment in your Lordships' House that that work will be ongoing, that we are looking to see how we can mesh the activities more productively and that we will keep noble Lords informed of its progress. We intend to make it work as effectively as possible. I know that my response will not satisfy all noble Lords' objectives, but we are not there yet, and therefore I am not in a position to make provision in the Bill.
My Lords, I thank the Minister for that reply. While she has not said "yes" to what I hoped might be feasible, she certainly agrees in spirit and is working towards a solution to the concerns that I, and other noble Lords who have spoken on this issue, expressed. I beg leave to withdraw the amendment.
moved Amendment No. 104:
Page 31, line 27, at end insert—
"(i) publishing, in any manner the Public Guardian thinks appropriate, any information he thinks appropriate about the discharge of his functions"
Amendment No. 104 and those grouped with it cover the functions of the Public Guardian and the vital importance of ensuring his accountability. I am very grateful to the noble Lord, Lord Kingsland, for his continued attention to this matter and for the time that he has spent with me and representatives from the Office of the Public Guardian to talk us through those issues.
Amendment No. 104 is in response to the amendment tabled by the noble Baroness, Lady Barker. The Public Guardian will provide information about the discharge of his functions. It was not included originally because we took it for granted that the Public Guardian would provide information, for example, on how to make a lasting power of attorney. I accept what the noble Baroness said in Committee; namely, that providing information will be important in order to let people know that the Public Guardian is there to act as a focal point on incapacity issues.
Government Amendment No. 106, in this group, is in response to an amendment tabled in Committee by the noble Lord, Lord Kingsland, and tabled today as Amendment No. 106B. The Public Guardian is to produce annual reports and the Lord Chancellor is to lay them before Parliament. The existing Public Guardianship Office already does that, but we are very happy to put it in the Bill in order to ensure continuing accountability.
It is not necessary for the Lord Chancellor to report on how well the Public Guardian discharges his function because that will necessarily form part of the Public Guardian's report. The Public Guardian will have to report against performance targets that will have been agreed with the Lord Chancellor and with its non-executive board. I beg to move.
My Lords, I am most grateful to the noble Baroness for her generous remarks about my amendments. The noble Baroness will recall that we had an extensive debate on those issues in Committee with—dare I say—a productive result. The noble Baroness has not only tabled one amendment which reflects exactly a concern that I had, but is also contemplating, in the light of the debate today, tabling a further amendment at Third Reading. In those circumstances, there is no need for me to repeat all of the arguments that were deployed at that stage. I need simply to comment on those of my amendments that appear in this group.
I accept entirely the need for Amendment No. 104 and I am very pleased that the noble Baroness has felt able to table it. Amendment No. 105B was tabled by me to ensure that the detailed regulations for the functioning and the supervision of the Office of the Public Guardian saw the light of day before they finally became etched in glass. I am satisfied, however, that other regulation-making powers in the Bill will meet that concern. For those reasons I see no reason to retable that amendment at Third Reading, and I shall not move it when the moment comes.
Amendment No. 105C, which I shall also not move, raises a very important general issue about the operation of the Office of the Public Guardian. As those of your Lordships who attended the Committee debate are perhaps aware, the previous public guardianship regime has been through—to put it mildly—a fairly testing time. The reasons for this are complex; but one of the ingredients was the failure to institute proper financial control systems. I am pleased to say that that problem has now been largely resolved and that, in future, we can look forward to an organisation which has proper financial procedures at its disposal.
My reason for suggesting that the Public Guardian ought to be fixed with the responsibility of a trustee in law was based on what I think is described in the legislation as the Public Guardian's "responsibilities of last resort". It is increasingly the case that the Public Guardian delegates to deputies the responsibility for distributing resources to clients. However, there has always been an irreducible minimum of clients who have remained the direct responsibility of the Public Guardian Office. It was to those clients that I felt the duty of trusteeship ought to be owed.
It was my understanding from our debate in Committee that it is the intention of the legislation to remove this category altogether; so that, in future, all deputy functions will be carried out by deputies who are entirely separate from the Office of the Public Guardian. The Office of the Public Guardian will become, for all intents and purposes, a supervisory authority. In those circumstances, it is clearly superfluous to bind the Public Guardian with the duty of trusteeship and therefore I shall withdraw that amendment.
The closest analogy one can make in law to the position of a deputy is that of an agent. I was concerned that this was not sufficiently demanding; but, through certain helpful interventions in Committee, the noble Baroness, Lady Ashton, assured me that, in the subsequent regulatory process, the rules about ensuring that the deputies meet their responsibilities properly will be carefully thought through and subsequently made. Noble Lords will have a chance to look at those and, if necessary, pray against them. I believe that that gives your Lordships' House sufficient control.
One of the most telling criticisms of the ombudsman in the case of Miss Laurence, which we discussed at some length in Committee, was the danger of the Public Guardian looking at each client as if their needs were in some way indistinguishable. I have forgotten the exact expression used, but it was something along the lines of, "One cap fits all". However, I am satisfied from what the noble Baronesses, Lady Ashton and Lady Andrews, said in Committee—and from a very helpful subsequent meeting—that the department is absolutely determined to ensure that, through the deputy system and through the system of visitors who will be, essentially, the grass-roots monitors of what is happening, each individual client will be given proper, tailor-made consideration. I repeat that this is a matter which can be dealt with by regulation and therefore for all those reasons I do not need to press Amendment No. 105C.
Finally, the noble Baroness has very helpfully tabled Amendment No. 106, which in substance mirrors a similar amendment I tabled in Committee and which I have tabled again at this stage, not having seen the amendment of the noble Baroness. However, having now seen it, I am perfectly content to withdraw mine.
As I said a few moments ago, I was privileged to take part in a meeting the other week with a representative of the OPG and some front-line information and advice workers. We concluded during that meeting that if one is a regular and avid listener to "Money Box" on Radio 4, the chances are that one will understand what the Office of the Public Guardian is; if one is not, one will not. My own performance target for the OPG is that it regularly turns up in women's magazines and the like, and it becomes an office which people know about and understand long before they have to have any recourse to its services.
I am wholly convinced that, for the office to do that, the job cannot be done by the OPG alone. It has to work with all sorts of organisations, statutory and voluntary, to begin the whole process of ensuring that, at least among front-line care workers, there is an understanding of what it is about, if not in the public's consciousness.
The amendment is welcome, but in order for people really to understand what the OPG is about, there is a huge job to be undertaken. I hope that Government do not underestimate that. Nor should they underestimate the resources of time, apart from anything else, that it will take to do that. But this is a very welcome first step, and I look forward with great interest to the annual reports that will come back to us. I shall spend many happy hours looking at them to see to what extent the office becomes more than just a technical entity known only to a select few, as it is at the moment.
My Lords, I am grateful to the noble Lord, Lord Kingsland, for his comments. He was absolutely right in everything that he said with reference to Amendment No. 105C and in his analysis of the role of the Public Guardian and the future role of the Office of the Public Guardian. I am grateful to him also for withdrawing his proposed new clause in favour of mine.
I agree with the noble Baroness, Lady Barker, that the test of whether the office works is in its execution. To that end, an implementation team has been working on the Bill for some time and beginning to think about all the different aspects of how we implement it, not least all the different stakeholders and groups who need to know and understand better what the Bill means; what the information means; what the sharing of information means; and how best to support the most vulnerable people that we have identified.
moved Amendment No. 106:
After Clause 56, insert the following new clause—
(1) The Public Guardian must make an annual report to the Lord Chancellor about the discharge of his functions.
(2) The Lord Chancellor must, within one month of receiving the report, lay a copy of it before Parliament."
moved Amendment No. 106B:
After Clause 57, insert the following new clause—
(2) The Board is to be appointed by the Lord Chancellor.
(3) The Board is to consist of no less than nine members.
(4) The Board must consist of at least two—
(a) registered medical practitioners; and
(b) certified or chartered accountants.
(5) It is the duty of the Board to supervise the Public Guardian in—
(a) the exercise of his functions with regard to this Act; and
(b) on any matter relating to or arising out of the exercise of those functions.
(6) The Public Guardian must make monthly reports to the Board on matters which the Board thinks are relevant and must provide them with such other information as they may reasonably require.
(7) The Board must prepare an annual report on its activities and that report must be included in the annual report of the Lord Chancellor to Parliament."
My Lords, I apologise for my premature intervention. I am still living in the world of last week's ping-pong, where Amendment No. 106A would be an amendment to Amendment No. 106 and therefore taken before it. I had forgotten that we were back to our normal procedures.
Amendment No. 106B has been the subject of discussions between the Minister and myself between Committee and Report, and I think the Government are very close to formulating an amendment of their own which I earnestly hope will appear at Third Reading.
The logic behind introducing a board of non-executive experts between the Lord Chancellor on the one hand and the Public Guardian on the other flows from the manner in which the Public Guardian has been supervised over the past six or seven years.
I am the first to admire the way in which the two most recent Lord Chancellors have carried out their political and judicial duties, but I have on occasion concluded that the management of the Office of the Public Guardian did not feature particularly prominently in their concerns. I know that the noble Baroness, Lady Ashton of Upholland, has made it her task, since she took office, to pay a great deal of attention to how the new system is being formulated, and I pay tribute to her for doing that. Nevertheless, I have concluded that there is too stark a difference, or too big a gulf between the Lord Chancellor and the Parliamentary Under-Secretary or Minister of State in the Lord Chancellor's office, on the one hand, and the Public Guardian on the other. I believe that there needs to be an intermediate body which can help to bring those who are politically responsible for the operation of the office in touch with what is going on at the grass roots. That is the thinking behind the proposal of a board.
I readily accept the observations of the noble Baronesses, Lady Ashton of Upholland and Lady Andrews, that I have been over-prescriptive in setting out the qualifications for being a member of the board. I am extremely happy to adopt a much looser formulation to give wider discretion to the Lord Chancellor in selecting its membership. I also recognise that the word "supervision" might pose problems in connection with the Lord Chancellor's overall political responsibility for the operation of the Public Guardian. I am hoping that at Third Reading we can all swarm around the expression "scrutinise", which would provide sufficient powers to the board but at the same time not compromise the political responsibility.
There are other matters of detail in the amendment which I trust will be resolved between now and Third Reading, in a week's time. But I am in no doubt that a board of this sort is needed, and I am reasonably confident that the noble Baroness, Lady Ashton, has also come to that conclusion and that it is just a matter of establishing the details. If we can get that into place, with the other amendments that the Government have tabled, we have a real chance of providing at the beginning of the 21st century a fine system which will give these extremely vulnerable people, who are its subject, the care and sensitive attention that they deserve. I beg to move.
My Lords, I shall just anticipate the Minister's answer. On the basis that the Government are to propose a revised version of what I believe is an excellent suggestion from the noble Lord, Lord Kingsland, I shall make two points.
The noble Lord, Lord Kingsland, seeks to have practitioners influence the OPG in a more formal way, which is extremely important.
I would make a plea that, however the board is constituted—and I accept that it will be done by regulation; it will not be on the face of the Bill—there should be within it a place for representatives of carers, because they are the ones who work these things out on a daily basis.
Secondly, I admire the comments of the noble Lord, Lord Kingsland, regarding rigour and the need for monthly reports. In the sorts of cases we are dealing with—which, after all, frequently involve lawyers—the pace of change may be somewhat slower. I rather think that one could have constructive, useful and sensible reporting on a quarterly basis.
My Lords, although I have not been able to be here all afternoon, I have specifically come back to support the noble Lord, Lord Kingsland, on this amendment. This stems from my own personal experience as a member of a non-departmental public body—and, indeed, a non-ministerial department—the Food Standards Agency, and CAFCASS, but it is to CAFCASS that I particularly want to refer.
I support the noble Baroness's comments on the importance of ensuring that we have on the board people who understand what it is about. The great difficulty that was experienced by CAFCASS—we now call ourselves New CAFCASS to distinguish ourselves—was that many people there did not understand the nature of the work.
The point of principle I wanted to make was that I think that a body such as this would give accountability to the office. We have some offices where I find that accountability is not clear. One thing a board will do is ask the specific and pointed questions. One hopes that it will represent a range of interests that will meet the requirements of those whom the office of the registrar is attempting to serve.
I simply wanted to support the amendment. On the board's constitution, I hope that the lessons of the past are learned.
My Lords, the noble Lord, Lord Kingsland, wants a board and so do I. The prevailing events of the past week have prevented us reaching the final wording, but I suspect that, given another half hour, we would be there. Hence, an amendment has not been laid properly before your Lordships' House; but I shall indeed table one at Third Reading. The amendment belongs to the noble Lord, Lord Kingsland, although I shall lay it. It is to his credit that we are at this point.
On membership, I agree about the practitioner role. I agree that we need to look carefully at timescales. It is always my wont not to put too much on the face of the Bill because, as times change, we may want to jiggle the membership or the timescales. What matters is that it is a board that we feel will do a good piece of solid work for us and achieve the ambition that the noble Lord, Lord Kingsland, has for it.
So, on the basis that the noble Lord will withdraw this amendment, I will bring forward at the end a provision that will be agreeable to all of us.
My Lords, I am most grateful to the noble Baroness. In those circumstances, of course, I am very happy to beg leave to withdraw the amendment.
moved Amendment No. 107:
After Clause 59, insert the following new clause—
(1) The appropriate authority may make regulations authorising the detention, in prescribed circumstances, of prescribed descriptions of persons who lack capacity, for the purpose of providing them with treatment or care which is determined, in accordance with the regulations, to be in their best interests.
(2) A person who is detained in accordance with the regulations is, for the purposes of this section, in protective care.
(3) The regulations may, in particular, include provision—
(a) as to the premises in which protective care may be provided;
(b) requiring prescribed conditions to be complied with in relation to the provision of protective care;
(c) as to safeguards to be provided for, or in relation to, persons in protective care;
(d) for a person's protective care to be reviewed at prescribed intervals or in prescribed circumstances;
(e) as to the circumstances in which a person's protective care must, and those in which it may, be referred to a prescribed court (or tribunal) for a decision as to whether it should continue;
(f) as to the circumstances in which a person is to be discharged from protective care;
(g) as to the persons by whom powers conferred by the regulations may be exercised;
(h) as to rights of persons in protective care to appeal to such court (or tribunal) as may be prescribed;
(i) as to the powers and functions of a court (or tribunal) to which a reference or appeal is made.
(4) The regulations may also—
(a) include provision similar to that made by section 139 of the Mental Health Act (protection for acts done in pursuance of that Act);
(b) provide for any provision of this Act not to apply for the purposes of the regulations or to apply with prescribed modifications.
(5) "Appropriate authority" means—
(a) in relation to the provision of protective care in Wales, the National Assembly for Wales;
(b) in any other case, the Secretary of State.
(6) "Detention" includes any deprivation of liberty within the meaning of Article 5(1) of the Human Rights Convention."
My Lords, I am moving Amendment No. 107 in slightly odd circumstances. This was the amendment that I tabled to introduce a new Bournewood regulation-making power. As noble Lords will know, a number of noble Lords spoke in Committee, and indeed on Second Reading, about the issue of the Bournewood judgment and the need for us to move at some speed to try to resolve it. As noble Lords will also know, I made it clear in your Lordships' House that it was very important that the process was done properly. That meant a serious consultation to ensure that we dealt with the issue appropriately.
The Select Committee on Delegated Powers and Regulatory Reform has been extremely helpful. I am extremely grateful to the noble Lord, Lord Dahrendorf, for his formal advice as well as for the formal work that the committee has done on this. We produced a very wide regulation-making power, but the committee, in its wisdom, has said that it is not an appropriate delegation. I completely understand why it reached that view. Since the regulations need to await the outcome of the full consultation, they are unusually wide powers.
The Delegated Powers and Regulatory Reform Committee is concerned that the powers have little in the way of limitations; that it is inappropriate to use secondary legislation in relation to powers to deprive someone of his liberty, especially when equivalent powers under the Mental Health Act are in primary legislation; and that there are likely to be a significant number of policy issues that warrant full scrutiny and amendment via primary legislation.
However, I wanted to move the amendment to enable us to have a short debate about what will now happen and to try to assure noble Lords of the Government's good intentions in this area. We wish to resolve the matter. I am very keen to hear how noble Lords feel about this measure. However, as I have already indicated, I respect the comments of the Delegated Powers and Regulatory Reform Committee and I shall withdraw the amendment. I beg to move.
My Lords, I have tabled Amendment No. 107A. It is extremely detailed and I am quite sure that my noble friend the Minister has a speaking note which says that it is much too prescriptive, is probably unworkable and that it needs some redrafting. However, one thing that my noble friend will not be able to say is that the amendment is unnecessary on the ground that there is a Bournewood gap and a solution has to be found. I hope that when my noble friend responds to this debate she will be able to tell us how and when the Government will fill that gap.
As regards government Amendment No. 107, I believe I suggested at Second Reading that we should see whether it was possible to draft a new clause which would put all the criteria on the face of the Bill and leave it to regulation to deal with the detail given problems regarding the time for consultation and so on. However, as my noble friend said, the Delegated Powers and Regulatory Reform Committee did not consider that that was appropriate.
Amendment No. 107A brings together important safeguards for people who lack capacity and receive serious medical treatment or care and/or who are effectively detained for such treatment or care.
Those who lack capacity often accept what others require them to do because they lack the ability to understand or to choose alternatives. I believe that these are known as compliant incapacitated patients. That is why safeguards are so important.
Treatment safeguards already extend to patients lacking mental capacity under the Mental Health Act and there is a belief that similar safeguards should be repeated in legislation which deals with mental capacity.
The amendment specifies four points that the Government have already said they wish to consult on. These are, first, the procedure for validating detention; secondly, the procedure for independent review; thirdly, representation; and, fourthly, a legal forum to test the legality of the detention.
The amendments set out to achieve two things. First, the qualification of acts of restraint in the patient's best interests, so that those acts cannot be transformed into full-scale detention (by means of repeated or prolonged restrictions on liberty and the like), or be used to justify wholesale changes in the circumstances of a patient (such as admission to hospital or a care home, or the provision of certain medical treatments). Secondly, they seek to achieve a scheme of safeguards that meet the requirements of the European Convention on Human Rights. I am sure that my noble friend will wish to comment on the problem which faces the Government with regard to the convention.
Such a scheme of safeguards should include an admission check-list concerning the capacity of the patient. Are they incapable of indicating their own view on their admission? If a decision is taken to admit them for care or treatment on a "voluntary" basis—that is, not under the compulsory powers of the Mental Health Act 1983—a number of conditions should then apply. I suggest that admission procedures should specify the following. For example, who can propose admission and for what reasons and on the basis of what kind of medical and other assessments and conclusions? There should be consultation with the patient's representative within 72 hours of the decision to admit. There should be continuing clinical assessment or review of the care plan and persistence of a condition or disorder requiring the detention conditions. I suggest that a first care plan should be completed within 28 days of admission, with a review at 28 days thereafter, and from then on, reviews at six monthly intervals.
Further, there should be a legal forum to review the legality of detention in accordance with Article 5(4) of the convention, and taking full account of Article 6 rights as to a fair trial of the issue. There should be a means of ensuring that the person concerned or their representative is provided with access to a legal adviser able to bring proceedings in any relevant court or forum within two days of notice of a challenge to the detention.
Various clauses in the Bill give statutory force to an existing common law power to permit the use of restraint, including the use or threat of force and restriction of liberty, where necessary as a proportionate response to the likelihood of the patient suffering harm; which is the principle of necessity. In so doing, the clauses are extending the principle to restrictions that could go much further than the current common law allows. Where the conditions of detention are thereby created, use of such provisions could put carers, the donees of lasting powers of attorney, and deputies appointed by the court in breach of the European Convention. A further case decided by the Court of Appeal in December 2004, after the Bournewood case, MH v the Secretary of State for Health, further strengthened the requirement for such safeguards and for the availability of legal representation for a review of the legality of conditions of detention.
That is a brief résumé of a complicated subject. I understand the problems faced by the Government, and I sympathise with them. We have discussed it at length, both in this forum and also in the Joint Committee on the draft Mental Health Bill, on which I also served. There is a problem of resources. The number of people who would be affected is still unclear. I am sure that the drafting that the Government wish to do will be affected by their best calculation of the numbers involved. There is a principle here, involved with the detention of compliant, incapacitated patients and their rights to liberty. That must be dealt with as a matter of principle. If there is a problem of principle, whether it is 20 people, 20,000 people, or 200,000 people, it must be dealt with. We must get the principle right in such an important matter as detention and the removal of liberties.
If it is not possible to amend the Bill, there has been talk of the use of a future Mental Health Bill. My experience on the Joint Committee on the draft Mental Health Bill indicates that the 2006–07 Session is the earliest in which we are likely to see it, and even then it will have to find its place in the usual clamour for parliamentary space. Perhaps the other way to do it, and I am sure that this is in the mind of the Government, is free-standing legislation some time later this year if time can be found.
I sympathise with the Government's dilemma. This is not the only area of policy where principles conflict with resources. I have tabled the amendment—and I shall listen with interest to what my noble friend says—precisely to allow my noble friend the Minister to tell the House how and when the Government propose to close the Bournewood gap.
My Lords, there is no doubt that the amendments place the House in considerable difficulty. The Government are to be warmly commended for having responded to the concerns raised by many noble Lords on Second Reading and in Committee about the absence in the Bill of any provisions designed to address the issues raised in the Bournewood judgment. As the Minister explained, the amendments before us represent the Government's response to those concerns. Nothing would give me more pleasure at this stage in our proceedings than to give the amendments the green light, but I respectfully agree with the Minister that it would be wrong for us to do that.
The Delegated Powers and Regulatory Reform Committee has reported on the amendments in categorically negative terms. It pointed out that the proposed clause contains little by way of limitation in the Bill. It describes it as little more than a skeleton power. The seriousness of the matter at issue makes that an observation to which we should pay particular heed.
The report goes on to say:
"Detention of someone who has committed no offence is a difficult and serious issue requiring the closest scrutiny . . . we do not consider it appropriate for subordinate legislation alone to determine the whole range of issues covered by the proposed clause . . . It is our view that as far as the appropriateness of the delegation of power is concerned, the new clause 'Protective care for certain persons lacking mental capacity' is not an appropriate delegation".
I do not see how the House can reasonably disregard such an unequivocal opinion from your Lordships' committee, so I have come to the conclusion—albeit most reluctantly—that we should ask the Minister to withdraw the amendments, while at the same time urging her to use her best endeavours to make sure that appropriate primary legislation addressing the issues in Bournewood is brought before Parliament at the earliest possible opportunity.
I congratulate the noble Lord, Lord Carter, on his brave attempt to address the issues in Amendment No. 107A. Impressive as it looks, I am not sufficiently expert to assess its merits in the round, so we should defer to the Minister in that regard and await the observations that she is about to make on it.
My Lords, I do not wish to prolong the debate at this hour. I agree strongly with the noble Lord, Lord Carter, that the issue is desperate for a solution within a short space of time. Much in the Government's amendment is to be commended. I found myself reading it again the other night and thinking back to an argument that has raged ever since I have been in this House about "may". I wondered whether the Government might not have done themselves a favour to have used "must", particularly in relation to proposed new subsection (3).
That subsection sets out a list of issues—many of which are mirrored in the amendment tabled by the noble Lord, Lord Carter—which will have to be addressed to meet Bournewood. The Government do not have an option on that. Whether or not the Government miraculously manage to address the issue in this Bill or not, it is clear from the mental health committee's work that it will have to be addressed. The noble Lord will not be surprised if I say that I would be fairly astonished if mental health legislation came in even within the dates that he mentioned. To be fair, I think that he would be astonished as well, as both he and I have had the privilege of seeing the report of the committee because we are both members of it.
I agree with the noble Earl that the comments of the Delegated Powers Committee cannot be ignored. Nevertheless, there is an urgency to the matter. The report of the Joint Committee on mental health will be available very shortly. As soon as it is, perhaps the Government ought to seize the opportunity to follow the advice of the noble Lord, Lord Carter, and to undertake to bring in a piece of stand-alone primary legislation that will address what is an undeniably serious problem. We are talking about the deprivation of liberty of incapacitated people with no means or ineffective means of redress.
Although there is much to commend the noble Baroness's amendment—it is more of a kite than an amendment—I agree with comments made around the House.
My Lords, I know that the House is anxious to get on, but I want to add my voice to those who are disappointed that the amendment is not going forward. Not being a procedural expert, I am always totally impressed when the noble Earl tells us that it is not possible for an amendment to do so. We do not want other incidents like Bournewood to happen. We need something in place that gives guidance. I would like to press the Minister for some idea on when and how that might be brought forward.
My Lords, I am grateful for the kite-flying expedition. I feel that it has been worth the process, so I have to pay tribute to the officials and parliamentary counsel who drafted this. It was a huge piece of work, because it is so broad. In a sense, its purpose was to resolve the matter by secondary legislation. The procedure is that the Government do not go against the Delegated Powers Committee—the House can choose to, if it wished, but it is clear that the House does not.
It was also important to demonstrate commitment. What we have been searching for between the Department for Constitutional Affairs and, particularly, the Department of Health, who have responsibility in this area, is the best legislative route to deal with this issue. Again, I pay tribute to the officials who worked incredibly hard, under impossible timetables from me, to make this happen.
The consultation, which is the critical element of this, will be launched before the Easter Recess, which gives noble Lords a fair time. It is imminent, but not today. That will happen and it will be a good and important first step.
I can tell my noble friend Lord Carter that it is not so much a question of the principles conflicting with the resources, as being uncertain at present about the scope and resources implied within the judgment. We want to use the consultation to find out more about the actual position on numbers and resources, because it is important to get this right. In a sense, that has been the difficulty. It was an important judgment and we must ensure that we deal with it properly and effectively, therefore we have to go through a process.
I know that the Department of Health listened carefully when my noble friend Lord Carter has spoken before about the possibility of a stand-alone piece of legislation, and I know that that is being actively considered. There might also be the opportunity to add it to what I would call a "passing health Bill", although I do not refer to any particular Bill.
So there is no desire to delay. Consultation will be announced within the next week. When the consultation is finished, we will find the right vehicle as quickly as we possibly can. I hope that noble Lords feel that we were right to try to do something within the Bill, because that was the message that I very much took away from Second Reading, and that was the message that I conveyed to officials.
My noble friend will forgive me for not going through what is wrong with his amendment. Yes, he is right, everything is wrong with it except that it is not unnecessary—it is necessary, but it is not the right amendment. I am grateful to my noble friend for dealing with it.
I should say that I have to withdraw some other amendments alongside this and move others. There will now be a bit of interesting and nifty footwork, which will demonstrate whether or not I and my noble friend Lady Andrews are still awake. Please bear with us, because it will make sense: it is to withdraw the amendments that went with the main Bournewood amendment and replace them with other amendments that do not have that regulation-making power within. I beg leave to withdraw the amendment.
moved Amendments Nos. 109 and 110:
Page 33, line 28, at end insert—
""the Human Rights Convention" has the same meaning as "the Convention" in the Human Rights Act 1998 (c. 42),"
Page 33, line 29, leave out "consultee" and insert "mental capacity advocate"
On Question, amendments agreed to.
moved Amendment No. 111:
Page 33, line 40, at end insert—
""prescribed", in relation to regulations made under this Act, means prescribed by those regulations,"
My Lords, in response to concerns raised with us in Committee, by the noble Lord, Lord Goodhart, and the noble Baroness, Lady Barker, and by the Delegated Powers and Regulatory Reform Committee in its report, published on the
These regulations provide us with flexibility, allowing us to amend the Bill in the light of developments with the Hague Convention on the International Protection of Adults, once the convention has come into force.
Amendments Nos. 114 and 116 were tabled to make this change and to make regulations about transitional provisions for research projects and regulations responding to the Bournewood judgment, subject to the affirmative resolution procedure. In addition, they change the reference to "independent consultee" to "independent mental capacity advocate" following earlier amendments today.
I have already indicated that I will not move Amendments Nos. 114 and 116. Amendments Nos. 114A and 116A will replace these. They fulfil the commitments I made about the other regulation-making powers I have just mentioned, but do not refer to "protective care".
I would now like to turn to Amendments Nos. 111 and 115. Amendment No. 111 simply defines the use of the word "prescribed" in the Bill. We have used this term in relation to several regulation-making powers in the Bill, and the amendment clarifies that "prescribed" means in relation to the regulation-making powers in the Bill rather than prescribed by any other procedure.
Amendment No. 115 will make any Order in Council subject to the negative resolution procedure. An Order in Council can confer on the Lord Chancellor, the court or another public authority, authority for enabling the Hague Convention on the International Protection of Adults to be given effect in England and Wales.
The Delegated Powers and Regulatory Reform Committee thought that this power was already subject to the negative resolution procedure. The committee has confirmed that it considers the negative resolution procedure to be the appropriate level of scrutiny to apply here. We have ensured that the negative resolution procedure applies in line with the views of the committee. I beg to move.
moved Amendments Nos. 114A and 115:
Page 34, line 27, leave out from "than" to "is" in line 29 and insert "—
(a) regulations under section (Loss of capacity during research project) (loss of capacity during research project),
(b) regulations under section 39 (adjusting role of independent mental capacity advocacy service),
(c) regulations under paragraph 33(1)(b) of Schedule 3 (private international law relating to the protection of adults),
(d) an order of the kind mentioned in section 63(6) (consequential amendments of primary legislation), or
(e) an order under section 64 (commencement),
Page 34, line 30, at end insert—
"( ) A statutory instrument containing an Order in Council under paragraph 32 of Schedule 3 (provision to give further effect to Hague Convention) is subject to annulment in pursuance of a resolution of either House of Parliament."
On Question, amendments agreed to.
[Amendment No. 116 not moved.]
moved Amendment No. 116A:
On Question, amendment agreed to.
Clause 62 [Existing receivers and enduring powers of attorney etc.]:
moved Amendments Nos. 117 and 118:
Page 34, line 39, leave out "this Act" and insert "subsection (1)(b)"
Page 34, line 41, leave out "this Act" and insert "subsection (1)(b)"
On Question, amendments agreed to.
Clause 63 [Minor and consequential amendments and repeals]:
[Amendment No. 119 not moved.]
moved Amendments Nos. 120 and 121:
Page 35, line 12, after first "Act" insert "or Measure"
Page 35, line 15, at end insert "or Measure"
On Question, amendments agreed to.
Schedule 6 [Minor and consequential amendments]:
moved Amendment No. 122:
Page 73, line 31, leave out "Seeking advice from independent consultee" and insert "Instructing independent mental capacity advocate"
On Question, amendment agreed to.
[Amendments Nos. 123 and 124 not moved.]
moved Amendment No. 125:
Page 77, line 37, at end insert—