Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence


Examination of Witnesses (Questions 92-99)

MR CLIVE EVERS, MR SIMON FOSTER, MR ROGER GOSS, DR ANDREW MCCULLOCH, MS PAULINE THOMPSON AND MS KATHRYN WILLMINGTON

16 SEPTEMBER 2003

  Q92  Chairman: Thank you all for your written evidence, which was very helpful, and for taking time to attend. The session is open to the public and it may be recorded for broadcasting. There is a verbatim transcript of the evidence which will be published with the Committee's report and you will be asked to check the text for accuracy, although the unedited text is put on the parliamentary website. If there is a division, I will have to adjourn the Committee for about 10 or 12 minutes. I think there should be a note of the interests of the members which are relevant to this inquiry. Representatives of the departmental and Bill team are present as observers. We are not required to report on the White Paper on mental incapacity; we are asked to report on the draft Bill and that is why the questions have been structured around the structure of the Bill. Perhaps you would like to introduce yourselves and if you wish to make a short, opening statement you are free to do so.

  Dr McCulloch: I am Andrew McCulloch. I am the chief executive of the Mental Health Foundation which is a charity working with people of all ages with mental health problems and also people with learning disabilities. I would like to say how important this Bill and this issue is for the service users, carers and donors to our organisation. We are aware of various issues coming up, including people who are not being cared for properly, whose wishes are not taken into account in terms of their practical, daily living and we are also aware of instances where people are subject to abuse or have had their assets taken away from them by others. It is a very important issue.

  Ms Thompson: I am Pauline Thompson. I am a policy officer at Age Concern with specific reference to community care finance. My interest here is about the financial issue and how we can use this Bill to learn from what has happened and move on from EPAs where, when they work well, they work tremendously well but, when they go wrong, they go very wrong; and how to have the right checks and balances and how people who have lost capacity can get redress if anything does go wrong.

  Mr Goss: My Lords, ladies and gentlemen, good afternoon. I never thought I would get the chance to say that. I am Roger Goss, co-director of Patient Concern. We are about gently nudging clinical culture away from its traditional mode of "we inform; you consent" towards a more patient friendly "we advise; you decide", in the case of those people who want to exercise that judgment. I have been involved with the subject of advance statements and directives for about ten years. I made an oral presentation to the then LCD Minister in response to the Who Decides? Law Commission report. As son of the manse, I am very conscious of how sensitive the issue of refusal of treatment is. I would only comment that the only difference between groups opposed to this legislation and ourselves is that those groups feel they have a duty to enforce their convictions on everyone; whereas we believe everyone should have a chance to make their own decisions. If it would be of any value to you at some stage, Patient Concern specifically would like to suggest a couple of amendments that we think would improve the Bill.

  Ms Willmington: I am here representing Help the Aged as a policy officer. We estimate that at least one million older people are directly affected by issues of incapacity and you can easily double that when you take into account carers and other professionals. We strongly support the implementation of this Bill with certain additional amendments, as suggested.

  Mr Foster: My name is Simon Foster. I am principal solicitor at Mind, the mental health charity, so I have particular interest in the legal implications. The particular focus that we have is around people with fluctuating capacity where there are enormous issues raised for people who have capacity. If they lose it, they regain it again and the question is how to balance their own right to autonomy, to make their own decisions against the need for protection, where required.

  Mr Evers: Clive Evers, director of information and education at the Alzheimer's Society, which is a leading UK care and research charity for all forms of dementia. We are a membership organisation with some 25,000 members who have written to us over the last ten years about many issues around capacity. It is important to note that there are some 700,000 people with dementia in the UK. Most of them are elderly but 18,500 are below the age of 65. People with dementia are living longer. People are living for up to 20 years. Carers continue to be the front line for looking after people with dementia and this Bill is very important because it will provide justification for the decisions that they have to take on a daily basis, but also important protection for people with dementia as well.

  Q93  Chairman: I think you have seen the questions. If there are any questions that we do not reach or if there are any suggestions you wish to make to us in writing after the session, you are of course free to do so. Under the heading "Best Interest", does the proposed check list on best interest strike a balance between supporting the autonomy of the person with incapacity and providing them with protection and is the suggestion from the MDA that the "best interest" should be replaced with "best personal interest"? Is that just a question of semantics or is there something much more important beyond that?

  Ms Willmington: One of our concerns about best interest is the issue that the person reasonably believes they lack capacity. Anybody can act in somebody's best interest if they really believe that person lacks capacity. We are concerned that this tips the balance in the wrong way. We feel it gives a presumption of incapacity and that goes contrary to the stated aims and principles of the Bill which have a presumption of capacity. It gives people the opportunity to say, "We presume that person . . .", so I think we feel we would like to see that either removed from the Bill or amended to have sufficient safeguards. We felt that there should be included a reasonable expectation about a decision over whether the person is going to recover and be included in the check list of best interest. That is part of the decision in terms of safeguarding best interest. Our main concern about best interest is the conflict. You can get a medical best interest; you can get a financial best interest or a welfare best interest. This is why we specifically put in the point about having the best personal interest as some way of trying to resolve that debate and steer people when they are trying to resolve those conflicts about what is somebody's best interest, to be able to say it is what is best for that particular person, whether their financial, medical or welfare best interest.

  Q94  Chairman: The intention is to treat each person as an individual so you would always be thinking about a best personal interest. Is it not just semantics?

  Ms Willmington: It is about particular decisions where a doctor, for example, says, "I think I know what this person's best interest is." Somebody else says, "I think I know what this person's best interest is." It is about trying to make sure that the focus is shifted away from other people's interpretation of best interest towards their interpretation of what they perceive of that person. It is important that that word be included because of that.

  Mr Evers: For example, the importance of personal best interest would be in relation to somebody with Alzeheimer's disease in a hospital setting or care home setting, where they may well be prescribed neuroleptics to control their behaviour. That may be in the best interests of other residents in that hospital or care home setting, but it is certainly not necessarily in the best interests of the patient.

  Q95  Lord Rix: Does the draft Bill provide sufficient protection for the best interests of people with impaired decision making, people for instance with a learning disability, who then become more incapacitated by mental illness, dementia, age? Is there sufficient flexibility for changing capacity in the Bill at the moment?

  Mr Foster: That is a very good question and quite difficult to answer until it is put into practice. Like any check list of best interests, the question is of trying to anticipate, trying to build in all the different factors, starting from the point of view of supporting the individual to make those decisions that that person can make, which must be the presumption. Where somebody has impaired decision making, they are not incapable of making any decisions. They are capable of making some and it is a question of trying to help and encourage people to make the decisions they can and then only looking at substitute decision making for those areas where the person is not capable. I would add the word "necessary" on the decision making where a decision has to be made, at clause 4, paragraph one. The Alliance is very keen on the whole on the idea of the general authority but subject to proper safeguards and checks, in order to enable that flexibility, where somebody's capacity fluctuates, where somebody is impaired in the first place and becomes additionally impaired as time goes on, who will have good days and bad days.

  Q96  Mr Burstow: Can you give any examples from other pieces of law or judgments by the court where best personal interest has been defined? What would be the additional test that would enable you to distinguish it from best interest? In relation to the oral evidence we had last week, I was not here but I have read some of the unamended transcript. There was a question there about the Scottish experience of having a list of principles at the beginning of the legislation. I wondered why that was not something which you had looked at and, if you have looked at it, why you think that best interest is more preferable than best personal interest.

  Mr Evers: We have looked at the Scottish legislation quite carefully. Much of it we support. In particular, we draw attention to the least restrictive option. That is something that could easily be added, so we are aware of that.

  Ms Willmington: We still prefer the concept of best interest or best personal interest than what exists.

  Q97  Baroness Fookes: Could I query this illustration you gave that maybe the best interests could be served in the home where the person might make a nuisance of themselves rather than the person themselves? I would have thought the Bill made it abundantly clear that the decision must be made in the person's best interest. How possibly can you substitute the home for that? It seems to me it is already absolutely clear.

  Mr Foster: I used to be a child care lawyer and the wording of the Children Act is rather different language. It talks about the welfare of the child being the paramount consideration. Once you start talking about best interest, it is very tempting to say it is obviously in the best interest of that person that there is harmony in the home, that the neighbours are happy etc. It is very easy to lose the focus on the individual who is being safeguarded, rather than the smooth running of the home, which of course is beneficial to the interests of the person as well. Trying to get that balance and trying to put the focus very firmly on the individual and how that then squares with the other residents etc. is the point the Alliance is trying to bring out.

  Baroness Fookes: I am not convinced.

  Q98  Baroness McIntosh of Hudnall: I wanted to go back to the relationship to the Scottish legislation because it feels to me as though best interest is a volatile concept and we keep coming back to this issue. The Scottish legislation provides that there has to be a demonstrable benefit to the individual flowing from any decision that is taken on his or her behalf. You presumably considered that as an alternative. Can you tell us why you continue to believe that best interest, albeit amended, is the right language, as opposed to any other?

  Ms Willmington: It is the devil and the deep blue sea. I am not sure we felt that there was one magic solution. We felt this was possibly the best. We were happy that this did reflect the ideas and underlying principles. I know there is concern about how paternalistic it sounds and that is one of the reasons why we felt we should add the best personal interest as a way of trying to counter that.

  Q99  Chairman: Which of the organisations works on a UK basis as opposed to only in England? Are any of your organisations experiencing the Scottish Act?

  Dr McCulloch: We do work on a UK basis. I have not had many reports yet of people experiencing the Scottish Act. Its coverage is not going very far in terms of depth and therefore one would not necessarily expect that at this stage. The proposal that we have here would be more all embracing in terms of day to day practice.

  Chairman: As we go through the questions, if there is anything which occurs to you where the experience in Scotland would be helpful, perhaps you could tell us.


 
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