Taken before the Joint Committee on the Draft Mental Incapacity Bill
on Wednesday 22 October 2003
Carter, L, in the Chair
Barker, B Mr John Bercow
Witnesses: THE LORD FILKIN, CBE, a Member of the House of Lords, Parliamentary Under-Secretary of State, Department for Constitutional Affairs; MS CLAIRE JOHNSTON, Head of Legal Advice and Legislation Division; MS ROSIE WINTERTON, a Member of the House of Commons, Minister of State, Department of Health; and MR ADRIAN SIEFF, Head of Mental Health Legislation, examined.
Q704 Chairman: Perhaps I could start by saying good afternoon and thank you very much for coming in. We are grateful for the letter we had of 16 October and the departmental papers that were attached to it. The session, as you know, is open to the public and is being recorded for broadcasting on the Parliament channel at 6 o'clock on Sunday evening. There will be a verbatim transcript, which you will be asked to check. The proceedings will have to be adjourned if there are divisions in either House. If you wish to follow up any points which either we do not reach or you wish to expand on any points made in the session, you can write to us after the meeting, but we need to receive those comments within a week of today. We remind all our witnesses that we are here not to write a White Paper on Mental Incapacity but to report on a Draft Bill, and therefore all the questions are structured around the Bill. Would you like to introduce yourselves and your officials, and, if you wish, to make an opening statement.
Lord Filkin: I am Geoff Filkin, Minister at the Department for Constitutional Affairs, taking the Bill forward, with my colleague, Rosie Winterton. The DCA has the specific formal lead, and of course in fact took over much of the excellent work Rosie Winterton did when she was a Minister in the Lord Chancellor's Department.
Ms Winterton: Rosie Winterton, Minister of State at the Department of Health, obviously working closely with DCA on the Bill. I am delighted that it is before us, as you can imagine given the input I had in a previous existence.
Mr Sieff: I am Adrian Sieff, and I am the Head of Mental Health Legislation in the Department of Health.
Ms Johnston: My name is Claire Johnston. I am Head of the legal team at DCA working on the Draft Mental Incapacity Bill.
Q705 Chairman: Do you wish to make an opening statement?
Lord Filkin: Perhaps briefly, just to position the Bill in terms of the DCA's wider programme. I also have one or two comments on the draft nature of the Bill and the scrutiny process. The Bill fits very strongly within the vision for the Department for Constitutional Affairs of trying to ensure that people, especially those who are particularly vulnerable, have their rights protected in society. It would be hard to find individuals who have a greater need for effective protection than the people we are talking about in this respect.
The Committee suspended from 4.04 pm to 4.12 pm for a division in the House of Lords
Lord Filkin: The process of the Draft Bill I think allows the involvement of wider interest groups in society in important and difficult areas at a time when the Government is not completely locked on to detail. It therefore allows a process of testing the issues and the ideas in ways that probably increase the potential influence of wider society, and it is better that it is done then rather than during the passage of the Bill itself, when inevitably governments tend to become rather entrenched in their views. Therefore, I think that process is in principle healthy. What I have heard is that the way the Committee has been facilitating that engagement has really come to life and allowed very vigorous engagement of many people outside who would wish to put their views on this area. We are really pleased that the pre-legislative scrutiny process through this Committee is so much coming alive.
Q706 Chairman: What are the Department's plans for introducing the Mental Incapacity Bill as a result of what you are hearing? Do you think there will be much more preparation and consultation required before a Bill can be presented to Parliament? We had been working to a very tight timetable on the expectation that the Bill would be introduced early in the new session.
Lord Filkin: There are a number of areas which I am sure we will touch on later. The lines of inquiry and the probing and the evidence have helped us to develop our thinking. We have not been static on this. We have, in a sense, started to reflect on areas where there is a need for either greater clarification or deepening how we would actually implement it. Above all - and I think our joint presence illustrates that - it is very important that the Department for Constitutional Affairs and the Department of Health work on the Bill as joint chaplains, which is our stance, both in terms of getting the law right but also thinking through how it would be applied in practice. I cannot say when or if there will be legislation, but there is certainly a vigorous will within both departments to try to move forward on some very important and complex issues.
Q707 Chairman: There has been extensive consultation over the years on this subject. Are you forming the view that following on the publication of the report you will need even further consultation with interested parties before you can begin the move of introducing the Bill?
Lord Filkin: In my experience, you never totally stop consulting. I do not think after this there will be a White Paper, but clearly, in the light of this, we took a view on something that needed further development. If I can give you a clear instance, there has been some vigorous debate about the general authority. The way government works well in my experience is that you try to at least engage people who are interested in that before you finally commit yourself to the ultimate detail of the Bill, and that would be the stance I would want officials to take on it, as an interactive process.
Q708 Chairman: A question for the Minister of State: we know the Department of Health is considering a Draft Mental Health Bill. If it were the fact that this Bill, when it comes to Parliament, was implemented before you were able to introduce a Mental Health Bill, would the provisions in the Bill link with the present 1983 Mental Health Act? If they were running alongside each other, would you foresee any problems? Should we be taking that into account in our thinking about this Bill?
Ms Winterton: First of all, with the Draft Mental Health Bill that we published last summer, we received something like 2,000 responses to the consultation. We are working with stakeholders still to refine it and make sure that we are taking account of some of the responses that we have received to that. However, we are obviously committed to reforming mental health legislation and we will publish a Bill as soon as finance and parliamentary time allows. In the mean time, we are working very closely with colleagues in the DCA to make sure that not only is the 1983 Act compatible with the Mental Incapacity Bill but also that the future Mental Health Bill is as well. Of course, they do address two quite separate issues, one dealing with people who have lost the capacity to consent to treatment and the other dealing with people who do not wish to consent to treatment but for whom treatment is felt to be a necessity.
Q709 Chairman: What about the Bournewood Gap, as described?
Ms Winterton: That is obviously something where we believe that the law as it currently stands is sufficient, but we do want to look at whether we could take the opportunity of new legislation to provide people who were in that kind of long-term situation without capacity to be able to have access to some of the same rights - advocacy, nominated person, mental health review tribunal. There is an issue about where that would most satisfactorily lie, whether it would be within the Mental Incapacity Bill or the Mental Health Bill.
Q710 Mrs Browning: We are waiting to see what the European Court has to say on Bournewood. You seem to indicate that you feel the Bournewood case was the case of a person who should have been detained, although it was a voluntary detention, but in fact, the case there was something which went quite against the spirit of this Bill, which is hopefully to empower carers and people close to that person to advocate for them. We have heard a lot about independent advocacy, and no doubt we will come on to that, but surely the point about the Bournewood case was that the carers who knew that person best were rejected by the so-called professionals all the way along the line, and that is what caused the case ultimately to come to court. How do you see this particular Bill rectifying that particular situation? It has been said to us that this is a charter for parents and carers. Where do parents and carers come into the Mental Incapacity Bill, particularly in respect of those carers in the Bournewood case?
Ms Winterton: If there were a situation like that, one of the things I would expect the Court of Protection to do at quite an early stage would be to decide whether, for example, a deputy might be appointed, because obviously in that case there was not a lasting power of attorney with somebody else, and in terms of the basic principles of the Bill that the person who would perhaps be appointed as a deputy would have a stronger ability to intervene in the care plan as well. Within that, I think the Bill also says that the patient's best interests should always be taken into account, and carers in that situation would have a far greater input than perhaps the situation is at the moment, where there is not so much clarity about how the views of carers should be taken into account.
Q711 Mrs Browning: I am sorry to press you on this, but of course, it was under mental health legislation that the young man in the Bournewood was taken in. I am not clear in my mind which would take precedence, the mental health legislation or this particular legislation.
Ms Winterton: I think in the particular case, initially the person was considered to be compliant, but there was no longer-term ability to challenge that, and after the situation with the carers I think there was a detention, as you say, under the Mental Health Act, but I think it was after he had come back into hospital that the Mental Health Act was used. I am not quite clear about the actual sequence of events; that is as I understand it, that the person returned to hospital, and after that, because there were various issues legally, the Mental Health Act was invoked. I do not know whether Claire might add anything to that in terms of the details of when the Mental Health Act was instituted in that case.
Ms Johnston: I think it might be more appropriate for Adrian to help.
Mr Sieff: What we are talking about is a person who was in hospital under informal care, but because they were incapacitated and compliant, the Mental Health Act was not used. The carers then wanted the person to be taken home, they felt it was more appropriate for that person to be at home, and it was only after this stage that the person was sectioned. If I remember correctly, the court case is about the period of time before the person was under section, when they were in informal care and whether, because they were compliant, the Mental Health Act should have been applied and therefore their rights had been abused.
Q712 Mrs Browning: I am sorry to pursue this, but I think it is quite important because the Bournewood case is the case which I think many of us have in mind in terms of whether this particular legislation is going to prevent something like that happening again because it would empower carers to be listened to at an early stage. The carers in the Bournewood case had commissioned me to raise this in a previous debate, which I initiated in the House a few weeks ago, but in their own words, if this could perhaps put it into context, as carers, as the advocates closest to the person who was taken in under the auspices of the mental health legislation, they were rejected by the professionals in that psychiatric hospital, and ultimately, they told me, it was even suggested that they themselves needed psychiatric treatment because they tried to be robust advocates on behalf of an autistic young man who should never have been taken in there in the first place. What I am asking you is, are you absolutely certain - this was part of the Chairman's question - that what you are putting before us in this legislation is going to deal with cases like that? Are the people who really are acting in the best interests of somebody, and who very often find themselves up against so-called professionals who do not have the full picture, going to be empowered by the legislation you are putting in front of us?
Ms Winterton: That is what I was saying. Whilst we believe that we are right in the current situation with regard to this particular case, what we do want to do in the future is to give the patient in that scenario the same access, for example, to advocacy and a nominated person and access to a tribunal if after a 28-day period they continued to be kept in those circumstances, and in those circumstances, I would expect that the carers would be the nominated persons.
Q713 Baroness McIntosh of Hudnall: Can I press you a little on this question of precedence as between the two Bills, whether it be the existing Mental Health Act or one envisaged to be on the statute books in the future? One might imagine a situation in which somebody is sectioned under the Mental Health Act, for whatever reason. As a result of whatever it is that causes that person to be sectioned, he or she might be incapacitated, within the terms specified by the Draft Bill that we are looking at now. In those circumstances, what I would like to know is whether that person's rights under the Bill we are now examining would take precedence over the rights of those who had caused that person to be sectioned, to submit that person to treatment, or indeed to take decisions for him or her. It is a question of practical reality at the moment at which the provisions of both Bills might be in operation in one case.
Ms Winterton: Under the Mental Health Bill and under the Mental Health Act the necessity for treatment, because the person is either a risk to themselves or to other people, would apply whether the person did or did not have capacity, so in that sense, because we are looking at compulsory treatment with detention, that would override the ability - I do not know whether you are meaning would the person who perhaps had lasting power of attorney have the right to dictate treatment. Is that the kind of thing that you are getting at?
Q714 Baroness McIntosh of Hudnall: For example; not exclusively.
Ms Winterton: What I would say there is that I think we do need to look in terms of things like codes of practice from the Mental Health Bill as to how one clinician would consult with somebody who had lasting power of attorney, would look of issues of advance directives. You could not say that they would override a clinician's decision in those circumstances, but I certainly think that, in terms of some of the principles of the Bill, even in cases of compulsory treatment, there should be as much effort made as possible to try to consult with the patient. So I would expect that that would happen, and that those wishes would be taken into account, but because we are talking about a high-crisis situation, the necessity does overtake the consent.
Lord Filkin: As we would understand it, the Mental Health Act would take precedence in relation to treatment for mental disorder, and the Mental Incapacity Act would apply to all other situations.
Q715 Baroness Knight of Collingtree: You were kind enough, Lord Filkin, to send us last week a letter giving the reasons why the Bill was being introduced, and from that we understand that you are satisfied that the Bill is necessary. However, we have already received very large numbers of letters expressing concern, although some have expressed support for the Bill, and some witnesses have, but there is a really sharp division of opinion about this, and I want to ask you whether you think the Bill is going to improve significantly on the present situation. I am particularly thinking about an article in a national newspaper only a few days ago following up a case two weeks ago of a 91-year old woman in hospital whose food and liquid was stopped and was only re-started when her grandson got a legal judgment to do so. The article to which I refer says this legislation would allow the routine neglect and dehydration to death of mentally incapacitated patients on the orders of a variety of different agents, many of whom may have nothing to do with either medicine or the patient's family. The writer goes on to describe this as sinister, and she thinks court-appointed deputies, attorneys and even people who simply claim, with no validity, to know the wishes of the patient will be empowered to authorise non-treatment, including the withdrawal of food and liquids. That was not written by somebody of no importance or with no knowledge of law; it was written by the senior lecturer in the Department of Law at the London Metropolitan University. That statement worries me, and I would like to set it beside the question I have asked you. Thinking of what is said here, do you really feel that the Bill is going to improve the present situation as you hope?
Lord Filkin: Maybe I could make a general comment first and then use the interesting example you gave and respond to that specifically. On the generality, the reason we are confident that the Bill will make a significant improvement is that, first of all, it is addressing issues that affect a very large number of people and in many cases matter a lot to them. It does not mean to say we will automatically succeed in that aim, but it is an issue that is going to be of increasing importance to all of us in the coming years. So it potentially has a very widespread impact and relevance. Why, specifically, we are confident it will improve the situation is because it establishes very clear statutory principles as to how people are to be treated and cared for in a context where we believe, and many of the people who gave evidence to you affirm, that very many people are being treated as incapable when in fact they are not. It is far too easy to make a one-off decision for all people for all time under all circumstances, to label them incapable and then to deprive them of what we think are important rights of involvement and decision-making. We are confident that the Bill will push back that bad practice through the principles it enshrines, the first and perhaps the most important being that everybody has to start by assuming that this person is capable. Whatever label they have had put on them in the past is by the bye; you have to look at the evidence that this person is incapable at the specific point in time that there is an issue. That seems to us to be fundamental, the presumption of capacity. You have then to move on from that in practice. The second is the functional approach to capacity, which says essentially: does this person have capacity for the specific issue that we are about? In other words, is it possible for them to make that decision or, put another way, do we need to take this decision at this point in time or could we defer the decision until the person has capacity and is capable of taking that decision? So we are enshrining in statute very clear principles as to how both professionals and individuals are meant to address the care of people, and we think it goes a very long way to ensuring that their best interest, which is clearly one of the themes running throughout the Bill, will in practice be met in many more situations than is currently the case. We are confident, reassured in part by the experience in Scotland, that this will make significant progress. Turning to your specific illustration - and I read the Daily Mail article that you referred to - we think the Bill would improve the situation for that lady, because under the Bill her family would have to be consulted about her care, and that seems to us to have been what went fundamentally wrong in that situation. The family would have a right to be consulted, and the doctors would know that they would have to act in her best interests. Thirdly, if the doctors, despite that consultation, were still of the view that it was appropriate and they were charging ahead in ways that the BMA and others see as a fundamentally bad medical practice, in that extreme situation, that family would have easier access to court than they have now to challenge them, because it will be easier to go to the new Court of Protection than it is to go to the High Court. The Bill would not allow routine neglect and dehydration. It is for those reasons, in generality, that we are confident that the Bill will strengthen protection, and we are confident in the specific dreadful example you instance that that would have been significantly less likely to have happened if this legislation had been in place.
Q716 Baroness Knight of Collingtree: Would you then say that the Bill itself, as it stands, as we are considering it here, actually will end the practice, about which there is now a very considerable body of evidence that, whatever the relatives say, the doctors will, having classed giving food and liquid as medical treatment, order that treatment to cease?
Lord Filkin: It is very dangerous, as a politician, to say "never", as you know better than I. I think in fact it was already clear in the BMA guidance that the doctors should not have acted in the way they did under current law. When this Bill is in place, as we hope, we believe it will significantly reduce the likelihood of what you describe happening, because there would be consultation with the families. The best interests of the patient would be a clear statutory factor that had to be considered, and if the family, for example, in that situation said, "It has always been clear that she would never have wanted this sort of treatment, and our judgment about her is that she would never want this to happen," the doctors would be committing an offence if they acted in defiance of that, if they proceeded in the light of clear evidence that that was not what she wanted.
Q717 Baroness Knight of Collingtree: That is a case where of course one would perfectly well agree that where a patient says "Please don't give me food through a tube" then that patient's wishes should be accepted. I am not speaking so much of that as the patients who have never asked to be denied food and liquid but in fact are, and their relatives are too nervous to argue, believing that the hospital always knows best, until it is almost too late. There are now many instances of that on record. I am grateful for what you have said and I hope very much it will be the case.
Lord Filkin: Care practices take a while to implement. Nobody claims that by passing a law you suddenly change all the practice, but it will be very clear indeed in principle, which is why there is guidance to professions and from professions to their practitioners, that in the situation you describe, which is in essence one of the most difficult and painful decisions that have to be made, as to whether to sustain a medical treatment by artificial nutrition and hydration when there is no longer a medical reason for it, the doctors in that situation would be expected to consult with the relatives and ask, "Is there anything you know about her situation that would help us make this decision?" The second issue would be, in very difficult situations like this, the Bill will provide easier access to go to court, so that a doctor in that situation would be well advised to be cautious, with no immediate need to act, and to go to the Court of Protection and seek the Court's guidance on that, which of course would also allow the relatives, if they had not already been listened to, the opportunity to express their views very clearly to the Court.
Q718 Chairman: You have mentioned guidance, and we will have some questions later on the Code of Practice, but would you expect the Code of Practice to be published in draft at the same time as the Bill was introduced in Parliament?
Lord Filkin: It would certainly be our aim. It will partly depend on how much work we think we need to do to the codes of practice in the light of the consideration of the views of the Committee, and how early we get a legislative slot if we are successful. It would clearly be our aim because, in my experience, it makes for a better informed Committee process in both Houses if you have principles and codes, particularly when under this Bill the codes of practice will rightly have to carry quite a lot of the burden of expressing the principles.
Q719 Huw Irranca-Davies: In your opening statement you warmly welcomed the wide consultation and the work of the Joint Committee in bringing forward quite a multiplicity of views with respect to this Bill. One of the things we have heard widely divergent views on is the issue of human rights and whether human rights are enshrined within this Bill. If I were to simply ask you "Do you feel that, as currently drafted, this is compliant with human rights legislation?" I am sure the response would be "Yes." If I turn it on its head, can I ask what would your response be to those - and in particular I can refer to witnesses we saw yesterday in this Committee - who have referred to this Bill as knocking back 20 years the rights of those who have learning disabilities and those who are particularly concerned about advocacy? How would you respond to their criticisms of this Bill?
Lord Filkin: Let me make some general responses and then some legal responses. I have not yet read what was said, so I should be cautious in what I am saying until I have considered it in detail, although I have heard about the power of their arguments and how well they put it across. The specific reason is that at heart the Bill has an ethic running through it, the ethic being that the individual whom we are in this specific instance considering and what is in their best interests is the fundamental principle that the Bill is all about. In a sense, it is trying to put legislation and processes around saying that the only basis for taking decisions about a person who may have lost capacity is if you are doing it in their very best interests, not for the convenience of relatives or hospitals or anyone else. In essence, that is about confirming a fundamental right. More specifically and technically, obviously we have considered it, and our judgment is strongly that it is compliant. That view is shared by the Joint Committee on Human Rights, who saw no significant risk of incompatibility. The new Court of Protection, taking the example we just spoke about, provides a better route for testing particularly Article 6 rights than currently; it is easier to go to the Court of Protection than it is to go to the High Court.
Q720 Huw Irranca-Davies: Colleagues later will want to go into issues of general authority, so I will not touch directly on that, but you said in your opening statement that those who are particularly vulnerable have their rights protected and that is the essence of this Bill, but are you confident, in light of what we have heard from some of our witnesses, that the balance is correct in terms of their individual interests as opposed to the interests of the wider community, which may have a different view of what would be the best approach?
Lord Filkin: If I have understood you correctly, many of those concerns hinged around the general authority. It is either that we have failed to communicate clearly - in other words there has been misunderstanding - or there is an area of real concern, and I am not going to jump in and say it is neither of those at this stage. In essence, the short answer is no, I think we want to give some very serious thought to some of those anxieties, because obviously we are most concerned that the Bill is felt to be of benefit as well as being actually a benefit. So we have to look at those issues. In other words, our minds are not closed; we are not thinking we have got it perfect. I would not want that by thinking there was necessarily an easy escape route; in other words, just knocking off the general authority is not necessarily a wonderful answer, because what the general authority does is try to put in place a legal authority, albeit circumscribed by certain tests, which does not mean that people have to constantly feel that they are in a legal fog or that they have to constantly go back to court. There is some evidence from Scotland that because there is not a general authority, for example, in the Scottish Act, people are probably going to lawyers, going to court, more than is desirable or necessary. Whether there is a way between that Scylla and Charybdis I am not certain but that is, I think, the tension we want to address.
Q721 Huw Irranca-Davies: You have also alluded in your opening statement to the fact that your thinking is, as you have just reflected, open to change and modification based on what we have heard. Are there any other areas, in terms of the protection of the human rights of an individual, where you think some development might be seen in your thinking?
Lord Filkin: I cannot think of anything specifically in terms of the legislation. As ever, how you implement the legislation is an even bigger challenge than getting the legislation right. We are going to have a lot of thinking, as we are actively doing, across government, and particularly the Department of Health, about how it is implemented, because you can get a situation where the law is fine but the practice is not.
Q722 Baroness Fookes: You will be aware that we had as early witnesses representatives of Scotland, who clearly thought that their brand of legislation was superior to this Draft Bill. Could I ask you first if there are any other lessons than the one you referred to about the general authority that we could learn from the Scottish experience?
Lord Filkin: We have been enormously helped by having their Bill a law and implemented, and we have sought to have a very close learning relationship with our Scottish colleagues, without necessarily taking the view that all we need to do is to copy their Act. I do not think that is the case. I will probably touch on one or two. There is the real importance of getting codes of practice right, and we touched on that earlier, and their experience reinforces that. I have already touched on the problem about not over-burdening it with a formal assessment of capacity. (General practitioners in Scotland threatened to go on strike because they were filling in pieces of paper rather than giving care.) We are concerned about the lack of clarity in their Bill, as I instanced, on informal powers, what led people to seek informal powers more than is desirable. That is the main issue. But this process has not stopped, and I think we would be wise to keep the dialogue running.
Q723 Baroness Fookes: Specifically, they lay great stress on their statement of principles, which is not in our draft legislation precisely in that format. Can you tell us why you have decided on the best interest as opposed to a statement of principles or something being of benefit?
Lord Filkin: The best interest is one of the principles - probably it is a fundamental principle. It is really saying that people are making decisions in a situation where there is not capacity and they are not at liberty to act at large; they can only act in terms of the best interest. Secondly, there are a number of other principles in our Bill: the presumption of capacity, the functional test of capacity - it sounds a dreadful expression; in other words, making a judgment about capacity at the specific point in time when you need to rather than speaking once and for all. There is a requirement to take all practical steps to help people make decisions, in other words, not just making it a black and white issue. Also, when it is clear that a person does not have capacity, still striving to take their wishes into account. These are some of the principles that are in the Bill, and we think those are right principles. We are certainly open to reflection as to whether it would give people more comfort to put some of those principles all together in one section. We are not saying that we will do that, but we need to think about why we should not have a section making it very clear rather than requiring the effort of going through the whole Bill to find the principles at various points in it.
Q724 Baroness Fookes: Some witnesses thought it would have been better if the statement that capacity is to be assumed unless proved otherwise should be at the very forefront of the Bill, Clause 1.
Lord Filkin: I think I have covered that in what I said previously. If we do decide to re-order, that would be a powerful opening statement. The whole Bill hangs on that, does it not? I am personally sympathetic, but that was not meant to be seen as a governmental commitment.
Q725 Chairman: Certainly, from the evidence we have heard, the perception of the Bill might be improved if the statement of principle were actually in the Bill rather than being hidden away in the various clauses. A number of witnesses would feel more comfortable and therefore the perception would be improved.
Lord Filkin: I hear that, and although one always takes parliamentary counsel very seriously, if the public would feel more confident about something, we would take that even more seriously.
Q726 Mrs Humble: Can I just ask you about the practical implementation of the legislation? When this Draft Bill in near enough this form, assuming that, becomes law, how would the two pieces of legislation be implemented, the Scottish Act and a new Act in England and Wales? Would it be based on the domicile of the individual concerned or would it be based upon the location of that individual should a decision have to be made about them? For example, somebody living in England, making an advance directive to refuse treatment, appointing somebody with lasting power of attorney, with a degenerative disease that will ultimately be terminal, decides in their last months to visit Scotland on holiday and, God forbid, they have an acute episode when they are there and find themselves in Edinburgh Royal Infirmary. They are incapable of making any decision. Would the advance directive to refuse treatment under the terms of the English legislation, which would apply to them if they were still at home in London or Blackpool, apply in Scotland or not?
Lord Filkin: It is such a good question that I should take legal advice on it.
Ms Johnston: This is a question about private international law, which is one of the most obscure aspects of the law that there is. Schedule 3 of the Scottish Act does deal with that. It deals with the jurisdiction of the Scottish courts. Before introduction we will have to add a bit to our Bill which deals with matching provisions. There are similar problems in relation to the Children Act, so it is an issue that has to be dealt with, but it is one of the areas where the Draft Bill does not cover the ground and will have to. Just for your information, the Scottish Act provides that the Scottish judicial and administrative authority can deal with matters if the adult is habitually resident, which is usually the test in international law, but there are complications in relation to real property, so land, the principle tending to be that the law of the country where land is situated has to apply to disputes about that land. I do not want to go on too much further. It is definitely a matter that would have to be dealt with before introduction.
Q727 Mrs Humble: So you are saying to me - and I am not a lawyer; this is not a trick question - that you cannot answer what would happen in my hypothetical case, but you will at some point be looking at it. I just wonder if you might be able to give us some advice before we conclude our deliberations.
Ms Johnston: The general principle would be that the law of the country in which you are habitually resident should apply. There are lots of cases on what that means.
Lord Filkin: As a non-lawyer, that feels right. If we can give further detail than that within two weeks, we will do so.
Q728 Mrs Browning: Could I ask you about the definition of "capacity" in the Draft Bill? Do you think the requirement for evidence of impairment of mental functioning and of impaired decision-making capacity before action is taken in a person's best interests is likely to be workable? Who is actually going to be responsible for this? Under what circumstances will a second opinion be required?
Lord Filkin: In many cases, it would be known that the person had had a learning disability, say, from birth, or had had a very serious illness which had deprived them of significant capacity. So in some situations there would be evidence that clearly pointed to that. The second question is who would have to decide. The answer would be anybody who was in a position whereby they might have to make a decision in the place of the person themselves, so it could be anyone from a relative deciding whether to take them on holiday or not to and a doctor deciding whether or not medical treatment was needed. Again, the diversity of the situations is relevant to the judgment, because if the judgment about incapacity was uncertain, and the consequence of the action was significant, for example, a major operation, then in that situation you would expect that the decision-maker, because there was uncertainty about capacity, would seek a second opinion and/or guidance from the Court of Protection. That is why we have both those measures and principles in the Bill. As you know, we are dealing with an enormous variety of circumstances when a decision may have to be taken on behalf of someone else. Those are the broad principles that would apply.
Q729 Mrs Browning: Can I just ask you about that, because you seem to be indicating that a long-standing diagnosis or accepted condition should in perpetuity be recognised by professionals and non-professionals as a lack of capacity, and yet we heard yesterday from adults with learning disabilities about their concerns about this particular Bill, particularly, for example, in some cases - but only in some cases - where parents and carers took decisions about them, the diagnosis and the lifelong condition is not being questioned. What they are questioning is people's ability to recognise that in fact, in many circumstances, they do have capacity, and in particular, very worrying evidence from directors of social services about the amount of abuse that goes on, particularly of elderly and learning disabled adults. What I am concerned about, Lord Filkin, in your answer to us is that it seems to be contrary to the very ethos of this legislation, which assumes capacity and then has to be proven not to be, therefore what went before surely has to be tested again against the benchmarks of this Bill. If I could add to that, what about those very difficult cases where capacity necessarily fluctuates, psychiatric conditions where people do have capacity and then it fluctuates with current mental illness? You cannot just assume that, because there is a diagnosis, there is no capacity.
Lord Filkin: No, I agree with that. The impairment is an initial hurdle as part of an assessment of capacity which needs to consider other issues as well. In some situations, the ones I gave, one would have to look at whether the lack of capacity was clear or not. That would be a further question, and I instanced that before. Is it permanent? Even if it were clear and it were permanent, one would need to ask whether there was capacity in that particular decision and circumstances, because whilst all of us may have a capacity for some decisions in some circumstances, most of us, including the people that we are most concerned about, clearly would have capacity for some decisions. Therefore, there is a constant burden of responsibility on both informal carers and professionals to apply that sequence of tests. What about fluctuation? In fluctuating conditions there is perhaps an even greater burden on the person to ask whether the decision can wait. If the decision can wait, one should do so. If the burdens and costs of waiting are bearable and the person might well have strong feelings about it, it is better to wait in that situation.
The Committee suspended from 5pm to 5.09pm for a division in the House of Lords
Q730 Baroness McIntosh: I wanted to pick up this issue of those who appear to lack or do lack some capacity but can, with help, be brought to a position where they can make decisions. It was put to us yesterday that, on a lot of occasions, people are denied the right to take decisions on their own behalf because what is required in order to help them to do that is a great deal of support and time. I wonder whether you could tell us whether you believe that the Bill will in time be supported with the degree of resources it will need in order to make its aspirations achievable?
Lord Filkin: As you know, the government cannot introduce into a House a Bill without having clarified the financial resources to support it. That is what we have to do. In clause 2(3), a person is not to be treated as unable to make a decision unless all practical steps to help them do so have been taken without success. With care and patients, the level of ability to get people to participate in decisions or to make decisions themselves has moved very considerably over the last 20 years. This all takes time and that has an implication for resources. In part, that is what best practice in care professionals will be doing already. That would be the ethic that we would expect social workers and doctors to operate. Part of our assessment on resourcing will be to what extent best practice is currently met or if there is a gap between average and best practice.
Q731 Baroness McIntosh: One of the reasons why best practice might not be achieved in comparable areas, we have been told, is that there simply are not enough people with the relevant skills. It is at least possible that part of the reason why there are not enough people is that there is not enough money to pay for those people to be trained, or for people who have some skills to acquire others. The question of putting resources into creating resources is going to be as important as funding directly the particular provisions of the Bill.
The Committee suspended from 5.13pm to 5.20pm for a division in the House of Lords
Ms Winterton: We are looking at some of the long term implications particularly for health and social care staff, regarding implementation and the likely training to be required. The codes of practice that were issued by the Lord Chancellor's Department as was, when I was there, have gone some way to raising awareness about the issues of incapacity, how to assist people in making decisions, recognising the fluctuating capacity considerations. Obviously, that will change when the Bill is passed but there is that increased awareness which is quite helpful, particularly in terms of training health and social care staff. It is difficult to give, particularly at this point, precise estimates of cost but what we have tried to do is to put together a model to see what the transitional and longer term costs would be. Perhaps I can go into a little detail about how we have done that. What we have tried to do is, first of all, work with policy experts, stakeholder organisations, health and social care professionals. We have said, "Can we assess from your point of view the likely impact of the Mental Incapacity Bill?" We look at the work they currently do and see how that will be increased or whatever by the demands of the Bill. We have also had workshops in various places like Birmingham, London, Cardiff and Manchester to work with those individuals to say, "Let us take this down to practicalities and see what else you need to be doing. Let us look at any additional demand. Let us look at the type of training that would be necessary to do that." We have also looked, where we know there is best practice at the moment, at how in the meantime that could be spread so, where we know that people are working to the high standards that would be required under the Bill already, we can then make an assessment from that as to likely costs. What that is showing so far is that we do need to look at some of the other assumptions as well -- i.e., numbers of people who may be involved in the care and training that perhaps is already available, for example, and how we need to enhance that where there are other training opportunities that it can be linked into. We are trying to get a much clearer idea of what we would be looking for in terms of those staff members and workers in the health and social care field.
Q732 Mrs Browning: Have you calculated what the costs would be if a facility for independent advocacy was added to the Bill?
Ms Winterton: No, except that in terms of the range of decisions that are going to be taken under the Bill and obviously the numbers of people that would be involved, quite frankly, it would be extremely difficult to envisage that there would be the scale of resources available. My impression as well would be that it is not always applicable in individual cases. There may be people who feel that is not appropriate for them individually. To say that we could look at the whole range of people who would be covered by the Bill and imagine that in every case there may be an advocate would be unrealistic for us.
Lord Filkin: I think I would emphasise "undesirable" also because there are very many situations in which there is not a need for a formal advocate. There are other situations where there might be.
Q733 Mrs Browning: You will be aware that various groups who have given evidence to this Committee, not just the people themselves who might have their capacity analysed, have made the case that in order to bring balance to those people whose capacity is being questioned independent advocacy would give the balance to that individual which they feel is tilted in favour at the moment of carers and professional staff. I hear what you say about the need to train and provide professional staff, but unfortunately in many practical examples one can think of right across the board, whether it is learning disabled or elderly, it is challenging what professional staff believe the right thing to do is for that individual that requires the input of independent advocacy. If this is not to be a charter for statutory services but is to be a charter for the individual and that independent advocacy facility is not there, it could leave this Bill subject to the criticism of not really being balanced in favour of the individual.
Ms Winterton: There is increasing support being given to advocacy and, through things like Valuing People, we have tried to increase that. There is a clear commitment to do that in appropriate circumstances, but I would come back to the point that Lord Filkin made that it is not in every one of these situations that it would be appropriate. Where there is increasing provision, that may well be used, but it would just be impossible to say that we can guarantee that in any one of those situations it is possible.
Q734 Mrs Browning: One of the difficulties with advocacy for anybody who is subject to decisions being made about them is that there is a real problem between the advocate being the same person who is employed by the statutory services who holds the purse strings and knows what the availability of choice is. For example, I do not believe social workers can truly be proper advocates for the individual because they are in the pay of the body that determines what is and what is not available. It is that problem that still exists now but which we also come up against, not in every case, but in many cases in this legislation.
Ms Winterton: Yes. I think though that, at the same time, you could look at some of the safeguards that will be there through things like the Court of Protection. In this circumstance, you would perhaps be looking into a deputy if it was not the person who had the lasting power of attorney. You are talking about somebody who is able to undertake the care of the person but who is an independent person. In those circumstances, there is of course the safeguard of being able to make an appeal against the decisions being made.
Q735 Baroness Fookes: In an informal situation, what steps might a concerned outsider take if he or she felt that the best interest principles were not being observed?
Lord Filkin: They would have a number of recourses, partly depending on location. If, for example, they thought a residential care setting was not appropriate for a particular person, there would be a range of locations they could raise that complaint to.
Ms Winterton: I did not realise what you were getting at. I thought you were talking about the court procedure.
Q736 Baroness Fookes: Let us start from the first principle: a concerned outsider is worried. What is the first step he or she would take?
Lord Filkin: You would go to the most immediate point of redress rather than jumping into court, for all sorts of common sense reasons. There is a range of complaints mechanisms in social care and health when individuals feel that someone is not being appropriately treated. These have been substantially strengthened in recent years.
Ms Winterton: If you were thinking in a wider sense perhaps of something a bit more sinister, where there was worry about abuse, I would draw attention to the "No Secrets" statutory guidance which we and the Department of Health publish, which is about the protection of vulnerable adults and which requires local authorities to set up a multi-agency approach for dealing with complaints of that kind.
Q737 Baroness Fookes: One would go to the local authority or specifically the social services arm of the local authority?
Ms Winterton: If a person was a deputy or had lasting power of attorney and they were complaining about the type of care that had been given to the individual who did not have capacity, there would be things like the patient and liaison service in a hospital and ICAS which has been set up to deal with specifically NHS complaints. There is also CHI, the inspectorate, which would look at the various areas as appropriate. That would be the situation whereby one would complain about the type of care that had been given. Going wider than that to the point about abuse, you hear something going on next door that makes you feel there is something going on that you are very uneasy about. That is why the "No Secrets" guidance was published and sent out, so that within each local authority area there would be established a multi-agency approach. Many of them have used adult protection committees to bring together people from the different agencies so that they have a recognised and agreed strategy for dealing with such complaints.
Q738 Baroness Fookes: Are you satisfied that there are sufficient staff to enable this to happen in practice?
Ms Winterton: Certainly it is something that we need to keep under review to make sure that the committees are working in the way that we would like them to. That is an ongoing commitment. Some of the local authorities will approach this in different ways. Some of them may be doing it with different time constraints. As a last resort, the Court of Protection also has powers to order where a person's best interests would lie in the previous situation that you were referring to.
Q739 Chairman: I would like your views particularly on euthanasia and past decisions. I am sure you are aware we have had a very large amount of evidence on the subject. Can more be done to assuage the concerns of the many who see this Draft Bill as proposing euthanasia by the back door? Should a specific exclusion be written into the Bill? Are other safeguards needed? Is there a need to look again at the definition of "treatment" or to define "basic care"?
Lord Filkin: We have been surprised by the extent of representation made about euthanasia under the Bill. Because of that, I wrote to MPs and peers to find out what was the position, firstly emphasising the aim of the Bill is to empower adults with mental incapacity to make as many of their own decisions as possible and, where this is not possible, to ensure that there are safeguards to protect them. Doctors are always obliged to act in a patient's best interest. Sometimes that will mean that more futile treatments are not given. However, euthanasia is quite different. It is a positive act carried out with the intention of ending life. The Bill contains no definition of euthanasia because it does not concern euthanasia. In a sense, it is quite difficult because I think some people do wish to believe it is about that; whereas it seems to us the Bill is not about that. I think all we can do is to keep on trying to find ways of saying that very clearly. The point is euthanasia is against the law and the government has no intention whatsoever of changing that position.
Baroness Knight of Collingtree: Indeed, there is reason for concern because what is already happening is quite clear. Patients are being denied food. You could say that it is not a positive action not to give food. I hope that is not the response. Certainly time and again it is on record now that patients in hospital are not being given the necessities to keep them alive. The fact that the Bill does not really address this clearly is what has given cause for the concern expressed.
Q740 Baroness McIntosh of Hudnall: Could I tie this together with the advance decisions, because I think that is where the difficulty comes. If somebody has made no statement as to how they wish to be treated and they are ill and incapacitated, a different set of priorities applies in the sense that it is absolutely essential that doctors act in the best interests of their patients and that should apply in all cases. However, if a patient has made an advance directive to the effect that he or she does not wish to be treated, which apparently is provided for in this Bill, the issue about euthanasia comes up because euthanasia, as I understand it, is not about people being brought to their end without their consent. It is to do with people being brought to their end with their consent. The advance directive provision implies or could be thought to imply consenting to having one's life ended as opposed to consenting to not receiving treatment. I know there is a difference and the Bill intends there to be a difference, but it is a difference that is in some cases hard for some people to discern. I do not include myself. I think I understand that the Bill is not intending that, but there is a great deal of concern that it is.
Lord Filkin: I am not sure that facing two problems at once helps or hinders. Let me have a go. When a person has an advance directive that, for example, if they are seriously ill it is clear that no ongoing medical treatment will be able to cure them and they do not wish to have doctors or hospital wards officiously striving to keep them alive through artificial means, in that situation it is clear. I think that is a situation that very many people in their ordinary lives do feel. The reverse also would apply, would it not, if a person had made a reverse advance direction and they did not wish always to have continuation of artificial nutrition? That was their judgment on whatever grounds, ethical or religious; that was what they wished. In that situation it would be clear. Staying with the artificial nutrition and hydration, because that is probably where the debate is, the middle ground, the most difficult ground, is where there has been no advance directive either way and it is as clear as the doctors think that there is no possibility of cure and yet artificial nutrition and hydration is sustaining the person alive. There are two responses to that. First of all, the House of Lords has made a judgment which we respect. It has made a judgment that in the Bland(?) case it was proper to end the artificial nutrition and hydration because that was seen as medical treatment. That was their judgment. I am not in a position to argue with it. We would say that, in situations like that, if there was doubt or dispute then the doctors should take that issue to the Court of Protection for a decision, particularly if there was any whiff of dispute between what the doctors thought and what the relatives thought. That is exactly, of course, what the Court of Protection is there for, a more accessible form of dealing with the most difficult issues. Of course, a decision has to be made one way or other, either that one continues the artificial nutrition and hydration for what might be 20 years or that someone makes a decision not to. The House of Lords decided that the decision in those circumstances to end it is not euthanasia but is the ending of medical treatment and we respect that position, but when in doubt the Court of Protection has to arrive at a decision in that situation.
Q741 Baroness Knight of Collingtree: But is it not very important to get on record that the Law Lords who made that decision made it also very clear that it should not be used as a rule by which things of that kind happened in future and that one of the Law Lords said, "This now leaves the law in an impossible position"? It should not surely be used as a yardstick now that that is what happens in cases like Bland automatically?
Lord Filkin: It certainly only applies as a judgment around PVS cases. If another case comes up in a similar context then House of Lords judgments carry precedent and need to, for good reason; otherwise we would always have to go to the highest appellate court in the land.
Q742 Lord Rix: Would you not think that the very phrase that is being used at the moment, "advance refusal of treatment", gives people the feeling that this might be a long-distance form of euthanasia? To refuse treatment is rather a negative way of putting it. I am certain you could write "advance statement on treatment" or "decisions on treatment for the future", and I believe you could write the advance statement or decisions in such a way that euthanasia would be totally excluded from the wording and the possibility of construing that thought. Can you tell me why advance decisions to refuse treatment actually found their way into the draft Bill anyway because I gather that the Lord Chancellor's earlier policy statement "Making Decisions" felt that such provisions were unnecessary?
Lord Filkin: At one level and one particularly these things are covered by the common law. What we have sought to do in the Bill is try to give as much appropriate certainty as we can. I think the argumentation about that would be in essence that here today, if I am assumed to have capacity, I can make the decision that I do not wish to have medical treatment. That has been a fundamental principle that effectively stated that not anyone else can force medical treatment on me if I do not want it. If that is right, and I think it is right, then the reason for putting something in the Bill about it would be, why would somebody who had lost capacity or knew that they were going to lose capacity not have the ability to express their wishes if they felt strongly about it? No-one says they have to express those wishes but the Bill gives them the power to do so if it is something about which they feel strongly.
Ms Winterton: Maybe I ought to come in here a little bit as obviously the question you ask is about why the decision was made to put it in. The difficulty was that if you left it out there would be a bit of confusion as to how that might relate to lasting powers of attorney and general authorities in the Court of Protection, so we felt at the time that this would be a helpful clarifying measure to include.
Q743 Lord Rix: Would you not agree that the wording "advance refusal of treatment" is perhaps a little pejorative and might make people rather retreat from the idea? I would rather put something about how I would like to be cared for in my last days than how I would like my life to be terminated in my last days.
Ms Johnston: There might be an issue about legislative provisions, which is what these clauses are trying to do, make clear what the legal effect is of a particular sort of decision. That may be one clause in a much longer document, much of which would not qualify as an advance decision, but what it was thought important to resolve was that if something that is a qualifying advance refusal has been made people need to know what effect that has on the other decision-making structures within the Bill. I do not think there is any suggestion that you could not make something still called a living will or an advance statement. What the clauses are trying to do is say that if bits of those things include advance refusals of treatment, then here is the legal consequence of that.
Lord Filkin: There is also perhaps a distinction, I have been reminded, between advance refusal, where we have a right to refuse treatment, and demanding certain treatment. We do not have the right to demand treatment. We can request it but it is not categoric that doctors or hospitals are forced to follow literally a request for treatment A as opposed to treatment B. In a sense there is a difference in the power of doing it in those two situations.
Q744 Lord Rix: In the codes of practice would there be a pro forma as it were for this advance refusal and advance decision possibility? Would there be instructions that witnesses could not be members of the immediate family, could not be likely beneficiaries of the will, etc? All this, of course, would help those who thought of this clause in the Bill as possibly leading to euthanasia.
The Committee suspended from 5.48pm to 5.56pm for a division in the House of Lords
Lord Filkin: In a sense we agree that it is important that they should be kept under review and up to date, and the code would deal with this, as the current BMA code of practice does. Also, in a wider context it would be very important to have advice in codes of practice about the making of advance directives which makes the person fully aware before they do so of the importance of it, the weight of it, the context of it, so that they can think very carefully about the range of issues. The test also with this would have to be about validity and applicability. I also think, if I recollect, but I may be in error on this, that it is not utterly absolute. There has to be an ability to take into account the context of the situation at the time by right and, if there is evidence, for example, that the person who made the advance directive in terms of their previous values or statements might have taken a different view if they had known the circumstances might change, that has to be weighed in the balance at the same time. That seems to me, although difficult, right.
Q745 Lord Rix: Would you exclude from witnessing likely beneficiaries of the will or relatives, which is normal practice anyway if you are making an ordinary will? Would it not be the practice for these advance statements?
Lord Filkin: It is normal practice, I think, is it not, and therefore we would need good reason not to, is the short answer.
Ms Johnston: I think a lot of these issues will be expanded on in the code of practice.
Q746 Chairman: Just before we leave advance decisions, we had some evidence from a number of people surprised at the terms of 23(2), which says that a decision can be expressed in broad terms or non-scientific language. The other thing that has been put is that they should be always in writing and perhaps witnessed, that they should be advisory rather than binding, and that all GPs should be required to record them in patient notes.
Lord Filkin: I understand why people made those representations, because of the potential importance of these decisions and a desirability for certainty. Against that though, which is why we certainly were minded initially (and it may still be our position) to keep it informal, was to allow what may be necessary flexibility. Frequently it is the case that people make these decisions quite late in the process, for example, before going into an operating theatre. We also do not want to discourage people from keeping them up to date by making it too formal or too bureaucratic. Having said all of that, we have got to look at this in the round to see if it is possible to strike a balance in any way better than we have done currently between obtaining the benefits of that informality without opening up the risk of abuse. It may be that it is impossible to do so, that you cannot actually meet both tests at once.
Ms Winterton: On the point of GPs, I think the difficulty might well be what would happen in an emergency situation, what if the person had changed their view but the GP had not been notified. There are some practical issues to think through.
Q747 Baroness McIntosh of Hudnall: You have laid considerable emphasis as this session has gone on on the importance of the Court of Protection and its primary value being resolving some of the difficulties that might arise as this Bill is implemented. How accessible, both geographically and physically, do you believe the Court should be and would it be able to act fast enough in the kinds of circumstances that you have described already in reply to earlier questions?
Lord Filkin: The first thing to say is that the Court of Protection is an important long stop, that it should not be seen as the court of first call. As much as possible we would want people to resolve disputes at the point of the dispute by using dispute resolution mechanisms in the context, whether it is a hospital or the GP or any care situation, for obvious reasons. You are more likely to get a better resolution by doing that. With regard to the specifics, the court will have a regional presence. We think it should retain the informality it currently has got. I went to sit recently in on the Court of Protection and it is quite appropriately informal, by which I mean it is sitting round a table, and that is good for obvious reasons. It will have emergency application, as the High Court has, for dealing with emergency applications, so yes, it would be able to deal very fast through emergency application procedures when it is necessary, as it must do.
Q748 Baroness Fookes: You indicate that legal aid will only be available in the new court for more serious and complex cases. How then will such cases be defined?
Lord Filkin: There are many cases when legal aid will not be needed because in many cases it will be an argument about the facts rather than about law, and many of the cases that go the Court of Protection will and should be dealt with in writing rather than requiring attendance. Also, we are cautious about seeing that involving lawyers - and I do not wish to be rude to lawyers - necessarily is the solution to some of these issues. If the person is perfectly capable of making representations themselves to the Court of Protection, as they currently do as individuals, given the context of informality, it is desirable, consistent with the principles of the Bill, that people continue to do so and one does not take that away. Also, using lawyers often can escalate issues by making them very adversarial in some contexts. Having said all of that, when it is necessary to have a lawyer put your case, because the issues are complex and they are legally complex, then the Legal Services Commission has the duty to provide people in those circumstances with appropriate legal support. Finally, the thing to say would be that the Official Solicitor himself, who is independent and an expert adviser, has also to act to represent people when he thinks it is appropriate to do so.
Q749 Baroness Fookes: The Law Society told us that they were really worried about barriers to representations, for example, the constriction of legal aid. Do you think they were overstating the case?
Lord Filkin: I think it is important not just to see funding more lawyers as necessarily the central need. In many situations it is important to provide people with information and advice about their situation and the options earlier on in the process rather than just seeing more legal aid obtained for formal dispute conflicts in the court. There is always a case made by the Law Society that it would be good to have more legal aid, and I would not want to comment on that, but I do not think that one should just see this as a debate about legal aid. It is as much a debate about getting information and advice to people at a point where they might need it.
Q750 Baroness Barker: One of the issues that has not received that much attention during our deliberations and one that I feel very strongly about is financial abuse, of which there is a great deal. I preface my question by saying to the Secretary of State that one thing that should be in the Bill is that people should think about receiving training even though the finance and banking industries were not there. I wonder if she might respond at a later date about that. I want to talk about the court-appointed deputies and how they are supervised and how their powers are reviewed. Under the existing system there is already a fair degree of disquiet, particularly about staff of local authorities, usually directors of social services, being appointed as receivers and, as increasingly they will be involved in the decision making not just about what care a person should receive but also the costs and charges of that care, there is potential for there to be a very big conflict of interest. I wonder if we could talk about that and also about expanding the role of the Lord Chancellor's Visitors.
Lord Filkin: On the first point about the avoidance of conflict, the Public Guardianship office currently is doing quite a bit of work trying to work with banks and building societies to raise awareness of EPAs and to raise the awareness of the risks of financial abuse. I think that is very important. We need to sustain that, obviously, in respect of this Bill, because at times it is clear that they do not always understand the need for vigilance and caution in that respect. Secondly, financial directors will in a sense operate in the same way as at present receivers by the need to lodge accounts with the Public Guardianship Office which clearly has a duty to enquire into anything that causes them or should cause them concern, and also that visits by the Lord Chancellor's Visitors are an important further safeguard, to visit the situation themselves to see if they can identify any evidence of actual abuse if that was there. We currently have a retinue of Lord Chancellor's Visitors. We will need to keep under review whether more are needed in future if this work expands as a consequence of the Bill.
Q751 Baroness Barker: One of the consequences of the Bill will be that powers of attorney will cover both financial and welfare decisions. There is a great deal of concern that within the system, both informally and formally, - and I contrast your last answer with the one before about not involving that many lawyers - there is a great deal of risk that people whose ability is limited are going to be subject to decisions about their care and their finances and that all of those decisions are going to be made by the same people in many cases without adequate scrutiny. That is the real point I want to draw out.
Lord Filkin: I accept the importance of the point. Clearly, we think of the ability to have health and welfare deputies as benefits but that also, as you imply, puts in the need to have effective supervision arrangements openly, and the short answer is that I think that is an area we are still in discussion on, on how best to give effect to that, in practice, the balance between what should be done by the PGO, what should be done by a care professional, inspection arrangements and so on at a more local level. Work is in progress on that but we accept the importance of a clear answer to that.
Ms Winterton: It goes back slightly to what I was saying earlier about the extent to which a complaint might be made, whether it is about the provision of care or whether it is something rather more which might be an abusive situation.
Q752 Baroness Wilkins: We have had disturbing evidence that some form of financial abuse takes place in about 20 per cent of cases. Do you think the Bill should be more trying to prevent that abuse?
Lord Filkin: I am not sure whether it is the Bill or whether it is we who have responsibility for trying to invigilate it more, because in essence there are already responsibilities on the Public Guardianship Office in terms of trying to identify and prevent financial abuse. It goes to the heart of their role because their role is about trying to provide effective protection. You will know as well as I do that that is not simple, by which I mean that the potential for abuse in this area is real and ever-present and one must assume, perhaps against one's wishes, that there is risk almost in any situation. For a PGO that is developing a specialist unit to investigate allegations of financial abuse and I had a vigorous session with their management board a few weeks or so ago about this where I was really playing devil's advocate in challenging them as to whether their arrangements for identification of financial abuse were strong enough. What we decided at the end of that was that we should basically involve for the Treasury an external auditor to look at their systems and processes to see whether they were as strong as they could be or should be. In a sense that issue applies now. It will apply just as much in the future but it is essentially an operational issue about trying to ensure that you have people who are very vigilant, highly suspicious, highly skilled at looking for patterns of abuse because, given human nature, there will be people who will attempt to do so, for obvious reasons. If somebody has got a lot of money it is tempting sometimes to help yourself to it.
Q753 Chairman: Is not the problem in fact that we do not actually know how many enduring powers of attorney there are? It is an unknown figure so therefore by definition any fraud or abuse is unknown. This is a problem that we hope that the LPAs will put right.
Lord Filkin: You are absolutely right. In a sense the situation of the Bill will be better than it is now because LPAs will have to be registered before they can be used, whereas with current EPAs it is difficult to monitor because they can be operated without registration.
Q754 Chairman: One view was put that the Bill should require all enduring powers of attorney to be made in the lasting power of attorney, but we are told that that is a practical impossibility.
Lord Filkin: I think that is probably true.
Ms Winterton: From the health care side it may be that people might want different attorneys for different decisions. Somebody that you trust with your finances may not be the same as somebody that you wanted to make decisions about your health and welfare.
Q755 Laura Moffat: The Bill is very clear about ensuring that people who are found to be abusing vulnerable people who lack capacity will receive punishment for that. Do you think that there may be value in adding to this Bill an inspection process so that the local authority or any other body may be able to inspect and threaten to inspect and therefore prevent or deter abuse rather than trying to stop it when it has occurred? Is there any value in that being put into the Bill?
Ms Winterton: We would have certain difficulties in that, although we are looking at the way that there could be a protection of vulnerable adults list and that would as well put a kind of workforce ban on people who had shown any sort of abuse before. There will be the systems that I have outlined before in terms of care homes, for example, inspection, the new CHI taking over inspection, and the committees that I talked about in terms of the multi-agency approach that local authorities will be expected to undertake under the "No Secrets" statutory guidance. I know there have been some calls to have a similar system as for child protection but I think the overall message we are getting, including from many of the stakeholder organisations, is that that might be overly intrusive and that carers and families might feel that that was inappropriate in those circumstances. What we want to try to do is to concentrate more on the safeguards for people as opposed to having the more interventionist and perhaps intrusive systems that have been mentioned in terms of making it very similar to child protection committees.
Laura Moffat: So "no" is the answer.
Q756 Baroness Barker: Your paper suggests that the new non-statutory Adult Protection Committees to be set up by councils with social services responsibilities will take the lead in protecting vulnerable adults from abuse, but the Association of Directors of Social Services told us that many local authorities have yet to see these committees and might not give priority to this unless placed under a statutory duty to do so. Would you consider making it a statutory duty to do so, and have you reflected on the impact on local authorities from the point of view of their budgets, bearing in mind that they do have to provide for their statutory obligations in advance of anything else, given the pressures they are under at the moment?
Ms Winterton: We understand that something like 90 per cent of local authorities have Adult Protection Committees either up and running or planned, and we obviously see that as a very good way of taking forward the statutory "No Secrets" guidance which, as I say, did require local authorities to look at how complaints could be made in this area. Having said that, we will continue to monitor the effectiveness of the committees and if we feel that there does need to be a strengthening of it we would obviously look at that very seriously.
Q757 Baroness Barker: Can you explain, Secretary of State, how Adult Protection Committees would differ from Area Child Protection Committees that have just been abolished with the introduction of children's trusts? What is the distinction?
Ms Winterton: This is for vulnerable adults.
Q758 Baroness Barker: I understand the client groups are different. What is the distinction in the model? Are we taking a model that has not worked that successfully for children and applying it to vulnerable adults or are we applying something different?
Ms Winterton: I must say I could not tell you the exact difference in terms of the constitution. I am quite happy to write about the difference between the two if that would help. Again, just to emphasise, we certainly feel that this is something that we will keep monitoring to make sure that they do have the powers necessary and that they are being set up in the areas as we have requested.
Q759 Laura Moffat: Naturally there is concern around the issue of medical research for those who are not able to give their own consent. The Medical and Psychological Society has given evidence to us and has raised concerns about that because it is very important that research goes on for things like Alzheimer's Disease to ensure that we are able to continue to be able to make medical strides in those areas. What protections are there not only for the people who may well be involved in medical research but also those who undertake that research?
Ms Winterton: The Bill itself allows medical research to be undertaken on somebody without capacity if it is felt to be in that person's best interests. Obviously, it would be very controversial to include research that was not in the person's best interests. However, if there is a feeling that on the one hand the provisions at the moment might be overly constraining as they stand, and if there are felt to be further safeguards that need to be built in on either side, then we will be happy to hear those representations and ideas and give them very serious consideration.
Q760 Baroness McIntosh of Hudnall: Can I just pick up one issue? You talked about research being in the best interests of a patient before it can be legitimate. It was put to us by the witnesses that have already been referred to that the definition of "best interests" could be extended to include the wider interests of that patient, such that, for instance, with research leading to treatment improvements that would not benefit the patient directly but would benefit, say, that patient's family, let us say, the discovery of genetic defects that could be corrected, the use of "best interests" in that context might be suitably extended to allow that kind of research. I am choosing my words rather carefully because what this seems to me to indicate is the extraordinary plasticity of the notion of "best interests" which has come up a number of times in the evidence we have heard. First, can you comment on this question about research and it not being directly in the interests of the individual patient and, secondly, does it give rise in your mind to any thoughts about best interests and whether or not it needs to be tied down as a concept rather more firmly than it presently is within the draft Bill?
Ms Winterton: Let us take an example. I am trying to think it through. If there was something which meant, for example, that the person's carer would perhaps otherwise not be able to care for them any more and they might die, and there was research which on the one hand did not harm the person but might in the overall sense allow them to maintain the lifestyle where they were happy where they were being cared for, is that the kind of area that you would define as in the person's best interests? That might well be the case. If it was that the medical research might allow the carer's children, say, to have a benefit in the future for their own children, then you are getting further away, I would have thought, from the person's best interests. There is a whole series of ways that I would suspect it is quite difficult to tie down to individual circumstances and would perhaps be something that would be looked at in codes of practice as opposed to trying to define something on the face of the Bill. Those are the kinds of areas that you would start to take into account when you were looking at trying to define best interests.
Q761 Baroness McIntosh of Hudnall: The Scottish Bill does not talk about best interests. It talks about actions which are directly beneficial or of benefit to the person about whom the decision is being taken. In this particular area of research, if the Bill stated that decisions had to be directly of benefit to the person it would be pretty clear that something that was not directly to their benefit would not be acceptable. That is why I ask you whether this particular issue does allow reflection on whether "best interests" is sufficiently robust as a definition or whether it should be qualified in some way, as has been suggested by other witnesses.
Ms Winterton: I suppose you could interpret "direct benefit" in the same way too. I would have thought that in the instance that I have given back you could see that one situation was a direct benefit; the other was not necessarily a direct benefit at all, and therefore I am not sure that "best interests" does not cover it adequately. As I say, if it is felt that there is a need for greater safeguards we would certainly look at that and hear what the Committee had to say.
Q762 Baroness Knight of Collingtree: Is it not the case and ought not it always to be borne in mind that the whole business of using incapable or possibly sub-standard people to do research on is something which strikes a chill in many a person's hearts? I think one of the difficulties here is that to try and assess the words that you used, Ms Winterton, "harm" and "best interests", is capable of all sorts of different constructions. What might be the best interests in the mind of a doctor with regard to a patient might well not be that patient's idea of what are in his own best interests. I think that the whole business of embarking upon using incapable people to do research on is fraught with danger and I would suggest that that is one of the reasons why this Bill has been criticised.
Ms Winterton: I would slightly take issue with the use of the word "sub-standard" because what we obviously have to do is make sure that in these circumstances we are treating people with the dignity and respect that they deserve as human beings. I think we need perhaps also to remember that in some of these circumstances, as people do when they are making a decision, for example, in drug trials, and certainly if there was consent from the person who had lasting power of attorney with knowledge that the person had perhaps previously expressed a desire to be or had previously been involved in such a situation, that might be an occasion where it was felt to be appropriate. In all those circumstances one would have to look very carefully at the expressions made by family members or somebody with lasting power of attorney, but if that had been something that had been stipulated previously or undertaken previously that might be an area where it was considered to be acceptable.
Q763 Baroness Knight of Collingtree: I am only suggesting that it is a slippery slope if we embark upon the concept of doing research on people who are thought to be incapable; that is all. I think that there are certain dangerous corners in this legislation that we ought to try and avoid because they will spark off trouble.
Ms Winterton: Could I also mention that, for example, research into new medicines for the treatment of, for example, Alzheimer's Disease, will have to comply from May of next year with the EU Clinical Trials Directive. That says that people who are incapable of giving legal consent to clinical trials should be given special protection and there should be some form of individual representation of the individual's interests. That is obviously in addition to the requirements for a positive opinion about the protocol of any such trial from an ethics committee. I think if we put those things together we do have that kind of protection there. As I said, we will, of course, listen to what the Committee says about this area.
Q764 Mrs Humble: I was going to come in after Baroness McIntosh's earlier comments but in fact they also follow on from the debate that we have just had. In answer to Baroness McIntosh you said that you were going to look at the different elements of best interests and perhaps introduce something in a code of practice to look specifically at areas of medical research. When you are looking at these codes of practice will you also then look at the possibility of giving different weight to the elements in clause 4 of the Bill where "best interests" is outlined, because it does list quite a few different things and it lists the individual's past and present wishes and then goes on to say that it would be practical to consult a variety of other people. Which is likely to be more important, especially in this very delicate area of medical research, if somebody is incapable of making their own decision and perhaps has not expressed any wishes prior to it, and then the only best interest test would be the views of their carers, their family, and is that sufficient? It is these two issues. In general terms is this list in a priority order and, if it is, then tell us? Secondly, would you be looking at according different priorities to these different elements in codes of practice that you would issue?
Ms Winterton: Obviously, I have already given some of the safeguards that will be there and particularly in the wider sense with the EU directive. I also think that in terms of looking at the whole issue of best interests it could in a sense distort the priorities if there was a ranking order. What we really need to be looking at is how we promote a partnership approach to decision making that, to the extent that the individual can be involved, should be and remains at the heart of the Bill and that should be something that is paramount in so far as it is possible. In addition, there will be the need to take into account the views of, for example, whether it was relatives or a person with lasting power of attorney. Again, that would be something that we would look at, but I know that this is an area where there is a high degree of sensitivity and I think that it is absolutely right that we do give consideration to how we can make sure that there are safeguards, and particularly when considering the issue of best interests in that area. I think it is something that we do need to look at very carefully in terms of the code of practice.
Q765 Baroness Fookes: I hope I am right in thinking that a patient with capacity can take part in research which may be of no direct or indirect benefit to that patient but they are willing to participate because of the advantages for the future. That is not possible if someone lacks capacity because they cannot give consent, but it does mean, does it not, shall we take Alzheimer's, for example, that it makes research into that which affects thousands upon thousands of people that much more difficult? Is there no way of finding a way round this for those who do lack capacity? It clearly cannot be in their best interests but is it not possible to introduce some arrangement whereby, subject to very strict safeguards, such research might be undertaken?
Ms Winterton: That is exactly what we are looking at. If we could go to an example, were there to be a drug that had been proven not to be harmful but that there was uncertainty as to whether it could improve the situation but it was only possible to test that in the situation where somebody had, for example, Alzheimer's, then that might be subject to all the safeguards that I have laid out already. Would that be an area that it could be said may be in the person's best interests because we know that no harm is going to be done but that there could be an improvement, so that might be an area where it was felt to be in the patient's best interests but at the same time I do think it is important that we look at what would happen as a result of the EU directive where an individual's point of view will be represented to make absolutely sure that there is going t be no detriment to that person.
Q766 Lord Rix: Would not a simple start be to drop the word "research"? That in itself is indicative of things that we have heard from Baroness Knight, thoughts of Hitler, etc, experimentation, research, that do conjure up rather unpleasant memories? I would have thought that if you used a different phrase like "new treatment" or "untried treatment", whatever it might be, at least you are talking about treatment. With "research" people have horrible thoughts and I would have thought it might be a good idea to change the word.
Ms Winterton: As I understand it I am not sure the word "research" is actually used in the Bill. In terms of talking about what flows from the Bill in terms of the words that are used, we would not be able to distinguish in terms of what we were doing with one group of people who are perhaps incapacitated and use one word for them and another word for other people, because that might be considered to be rather unsound.
Q767 Baroness Barker: There is one wider point. This process is going on in parallel to the consultation on civil partnerships. Would it be agreed that there would be a read-across from any civil partnership legislation, if it were to be passed, to this Bill?
Ms Winterton: In terms of the medical side?
Q768 Baroness Barker: No, in terms of the decision-making and consultation.
Lord Filkin: I do not think we know.
Q769 Baroness Barker: Can I leave that question with you?
Lord Filkin: I cannot immediately think there is a read-across..
Ms Winterton: In terms of consultation, are you talking about?
Q770 Baroness Barker: And things like power of attorney and who is going to be consulted about decision-making.
Baroness McIntosh of Hudnall: Whose family perhaps?
Q771 Baroness Barker: Yes.
Ms Winterton: I think that is probably something which is particularly applicable in the health care setting where there are a lot of issues about who should be consulted and, for example, if the Court of Protection was making somebody a deputy or giving a lasting power of attorney, if one had not previously been made, then I would imagine that there would be quite strong emphasis, if there was civil partnership legislation, on that being somebody who would be considered.
Lord Filkin: I think we should reflect on it and see if there is anything further in regard to that and provide it by a note.
Q772 Mrs Browning: I just want to flag up my concern about this medical research. When one looks at the medical research it goes from everything from experimentation in its early stages through to experimentation which has been advanced to the point where no human trials have yet been done. We can all understand a situation where there was not a developed drug or procedure that had yet been tested on human beings and a last resort situation, and I am thinking of the recent CJD case, for example, where the opportunity to submit somebody to that is very clearly a last resort, and this general medical research experimentation which I think should surely be something which people with capacity should consent to. The idea that you would need people without capacity to consent to this seems to me quite immoral.
Ms Winterton: As I have said, I am sure that there will be those who say there are certain circumstances where an improvement could only be seen if somebody actually had the particular condition which is obviously what happens in certain cancer trials and others. That is certainly something that happens. What I am saying is that I understand that it is a very sensitive area. I understand that with all the safeguards from the EU directive there is still a very real need to make sure that it is monitored extremely carefully. We are more than willing to hear views on whether there are further safeguards that need to be built in, at the same time balancing that with the points that are made by people who feel that they have made a very strong contribution in this area, that need to in some instances be able to work in certain ways with people who are suffering from a particular condition. It may be that you could overcome some of those problems in terms of people expressing when they felt that it would be appropriate for them. In some of the areas there will be fluctuating conditions and what we must make sure that we do is take into account individual people's wishes when they may have capacity in anything that they may wish to participate in when they do not have capacity.
Q773 Mrs Browning: But that is part of a different matter. When somebody is deemed to have capacity, and bearing in mind that most conditions, including Alzheimer's, are degenerative, it is not just something that happens overnight, somebody who has capacity and who says, "If X happens to me ...", in the same way as if you left your body to medical research after you died and you take that decision while you have capacity, that is a different matter. What really concerns me is that someone who is deemed to have lost capacity is then presented by some other party as being a suitable candidate for medical research.
Ms Winterton: Supposing you came at it from the other direction when, as you say, somebody has capacity and perhaps a clinician said, "Were you to lose capacity and were we to feel that there may be something which could be of benefit but we are not sure; we cannot guarantee that it is; we might be able to guarantee that it will not do you any harm but we need to see whether it could improve your position". Supposing in that position somebody said that they would like to give their consent for that, then that might be something that would be considered. Against, just to emphasise this, the Bill does not allow research to take place if it is not considered to be in the patient's best interests.
Mrs Browning: I just think, Minister, that if the person has capacity when they take a decision about future benefit which may affect them, particularly if they have a particular condition which is going to follow a pretty well rehearsed pattern, that is a different matter. They are entirely entitled to take that decision while they have capacity. What would worry me is someone who loses capacity and then is considered as a candidate for medical research under those terms. Those are two quite separate things and I worry that this Bill would entrap those sorts of people.
Baroness McIntosh of Hudnall: Minister, could I say that Mrs Browning has raised a case which is of recent date which does bear quite interestingly on this. I do not think we have discussed it at all. This is the case of the patient who was recently treated with a new drug intended to reverse the effects of CJD. The situation there, as I understand it just from newspaper reports, is precisely the one that is being described, that that person has lost capacity to a very significant extent as a result of the disease and was treated, presumably with the consent of those who have responsibility for him. Perhaps you would like to reflect on what impact, if any, that case and many others like it might have on the way that research is dealt with. At the moment research is not dealt with within the Bill at all but it has been put to us that it should be and it is included in the Scottish Bill.
Q774 Mrs Browning: If I may just say, that was a last resort type of intervention which could quite clearly, if it worked, be seen to have benefited that particular individual when all else looked as though it had failed. There is a difference between that and in someone's interests which might be of use in ten or 20 years' time to somebody else.
Ms Winterton: Obviously, what we are seeing here are the very real fears that are around this issue, which is exactly why it is not in the Bill, but of course we will take back the views that you have put forward.
Chairman: I think we have reached the point now where we should finish. I am extremely grateful, Lord Filkin, Minister. You have been very patient with all the interruptions and divisions. Although we have touched on "best interests", general authority and resources throughout the whole of the session, it would be helpful if you could write to us with specific answers on the questions which have been given. They are number 7 on best interests and number 8 on general authority, and at the end on resources.
Baroness Barker: Could I ask, when you respond to question 8 about general authority, would you say more about your plans for appointeeships and particularly you might like to include colleagues from the DWP in that respect.
Q775 Chairman: We are extremely grateful to you both. We were given a very tight timetable by Parliament, as you know. We intend to meet the timetable and we will be producing the report by the end of November.
Lord Filkin: Could I thank you for the expertise that you have brought to this. We will be pleased to respond as fully as we can to those questions and any others that, upon reflection, come to you in the next few days.