Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence


Examination of Witnesses (Questions 151-159)

MR STEVE BROACH, MS CAROLINE CLIPSON, MR RICHARD KRAMER, MS HAZEL MORGAN AND MS SUSANNAH SEYMAN

17 SEPTEMBER 2003

  Q151  Chairman: Can I start by saying good afternoon, thanking you for the written evidence and taking time to attend. We are required to report on the draft Bill, we are not preparing a White Paper on mental incapacity, therefore, all the questions you have seen are structured around the structure of the Bill and that is our task, to report on the draft Bill. Perhaps you could all introduce yourselves.

  Mr Broach: Thank you very much and particularly for this second day of evidence of the Making Decisions Alliance before the Committee. Our colleagues yesterday did not take the opportunity to introduce the Alliance. There are 27 organisations representing millions of people with impaired capacity and those who care for them. I am Steve Broach, I am co-Chair of the Alliance and here also to represent the National Autistic Society. The only point I would like to make regarding autism is that it is a spectrum disorder and that for the vast majority of people with the autistic spectrum, hundreds of thousands of adults in England and Wales, their capacity is not going to be easily ascertained. It is not black and white that they are able to make decisions or unable, so our key concern is that an accurate and informed assessment has to take place before the powers in this Bill apply to those adults and also that they have the opportunity to challenge both assessments and decisions that are made about them.

  Mr Kramer: I am Richard Kramer and I am head of policy at Turning Point. The opening comment I would like to make is really to talk a little about the history of learning disability because in the past it was assumed that people were not competent to make any decisions of any sort, so decisions were often made by staff in service settings without any attempt to distinguish between decisions that they could make and those that they could not or could make with support and the emphasis unfortunately was on group rather than supporting individual decision-making. Sometimes the intentions were benevolently misguided and sometimes it amounted to exploitation or inappropriate treatment and more routinely people who did not need hospital treatment spent a lifetime in hospital for the convenience of people, and our society is benevolent and that is why this Bill is so important because we feel that the absence of legal procedures in decision-making actually discriminates against people who cannot make decisions and the need to see this legislation in the broad light of disability discrimination legislation.

  Ms Clipson: My name is Caroline Clipson and I am from the disability charity SCOPE, which has a focus on people with cerebral palsy. Cerebral palsy is a condition which can affect people in very many different ways, but my particular interest and involvement in terms of the Making Decisions Alliance has been to look at those people who, with different conditions, have their communication impaired in different ways and so that is perhaps what my particular interest has been in, and some of the issues I will be talking about relate to that issue.

  Ms Seyman: I am Susannah Seyman from the Down's Syndrome Association and the DSA has campaigned for many years about the inequalities in healthcare for people with Down's Syndrome and this Bill is of particular interest to us to protect people who suffer from bad decisions which have been made.

  Ms Morgan: I am Hazel Morgan, head of the Foundation for People with Learning Disabilities which is part of the Mental Health Foundation. The Foundation for People with Learning Disabilities uses its research projects to promote the rights of people with learning disabilities and their families. One area of our work recently has been around choice for people with severe and profound learning disabilities which is obviously very important in the context of this Bill. To my work I bring the experience of having been a family carer and the mother of a son with severe learning disabilities and during his lifetime I became aware of the issues around decision-making, the issues for him and the issues for family carers, particularly in the final year of his life when he had many healthcare issues as a young adult.

  Q152  Chairman: Thank you. In situations where "there is a risk that the individual's own best interests would not in fact be the paramount consideration", do you believe that referring to "best personal interests" will significantly impact on decisions taken on behalf of individuals with incapacity? Does the proposed "best interests" checklist strike a balance between supporting the autonomy of the person with incapacity and providing them with protection?

  Mr Kramer: I think the starting point is that there is concern over the term "best interests" largely because it is an outdated term. It is used principally in courts of law now to determine the right of medical practitioners to make decisions about medical treatment, so the term is outdated and it does not reflect the wide decision-making powers that will be in the Mental Incapacity Bill. The second point is the point that has been raised by the Law Society, which we support, which is the terminology "best interests" and the concern that it may allow people to impose their views on what is in someone's best interests or what they would choose for themselves. We think that because of that and because it may be difficult to change a person's interpretation of "best interests", a new term, such as "best personal interests" is needed. I think the most important point is the starting point for the legislation. The starting point is really to maximise people's own decision-making ability and supporting that and that should be the guiding principle in the Bill. The fact that it seems that "best interests" is the guiding principle has given some misunderstanding that the Bill may restrict or impose a view over somebody's ability to make decisions, so, as a starting point, the guiding principle should be the right to make decisions rather than making an alternative frame for those who cannot make decisions.

  Mr Broach: The conversation yesterday and indeed with the Scottish witnesses focused very much on "best interests" and the difference between that and "benefit". I think it is very important also to look at the early reports in the draft Bill, clause 2, and the safeguards it puts in around assessment in terms of how people should or should not fall under the powers of this Bill. Two very important ones are 2(2), that, "A person is not to be treated as unable to make a decision merely because he makes an unwise decision". That is a very important safeguard relating to Richard's point around assumptions about people with learning disabilities, and that is not in the Scottish Act. Also in 2(3), that all practicable steps have to be taken to help the person make a decision before they are described as unable to do so, again that is absolutely important, although it needs to be defined as to what practicable steps would be considered in those circumstances, a broad outline of the principal section of best interests and also the second clause in the Bill about the ability to make decisions.

  Q153  Chairman: Would you be concerned if, under 2(2), a person clearly made a very, very unwise decision regarding their accommodation, their welfare or their finance or whatever? Even though it was a seriously unwise decision, you would stand by the right of that person who had made that decision?

  Mr Broach: Yes, we would and the test of capacity that is set out in 2(1), that simply the person can understand the decision and also can understand the foreseeable consequences of it, if a person is fully aware of the consequences and still chooses to make that decision, that is their legal right.

  Q154  Chairman: I suppose you would argue that they would be on the same footing as somebody with capacity who equally made unwise decisions?

  Mr Broach: Precisely, that is right.

  Q155  Baroness McIntosh of Hudnall: I just wanted to pick up on the issue you have already raised about Scotland and the terminology in the Scottish Bill. We asked your colleagues, as you have already noted, but it does seem to me that this "best interests" terminology is, as I described it yesterday, volatile and it does seem to me to be volatile, that it can have the potential to be used and abused. I am interested to know that given that you clearly accept that, you still feel that it is preferable to the kind of terminology that is in the Scottish Bill which describes quite clearly the necessity that there should be a benefit to the person on whose behalf decisions are taken. This is in the situation where decisions do have to be taken on somebody's behalf where it is clear that they do lack capacity.

  Mr Broach: As an initial answer to that, our thinking around this Bill was framed by the Bill that was put in front of us, so we have tried to amend the language that is used here and that is why "best personal interests" was one of our preferred options. In terms of whether "benefit" is actually preferable to "best interests", I think the point to make is that both are subjective and a benefit to an individual is also not an objective criterion. It also means that it is impossible for someone to take a decision that is not transparently of benefit to that individual because even if the decision may be in the person's wishes and feelings as the decision they wanted to take, you would not be able to take it unless it was to their benefit, so I think that both terms are problematic.

  Mr Kramer: I think the Scottish legislation is good in that it has a statement of principle which defines the tone of the Act and ensures more consistent implementation and I think that is important. The Making Decisions Alliance have said that there need to be some principles that will set the tone of the Act and the main principle is the right to make decisions, the recognition of people's autonomy, to preserve autonomy and to protect those with impaired autonomy. The other principles could be around a non-discrimination quality, supporting in terms of information, so there are a number of principles which can govern the Bill. The Scottish have chosen "benefit" which is a sound principle. There are other principles and I think that autonomy and the right to support decision-making would be ones for us.

  Q156  Baroness McIntosh of Hudnall: I find it quite hard to understand what the real value is that is added by "personal" in relation to best interests. It does not seem to me to clarify it very helpfully and I would be very interested to know why you want to amend it in that way.

  Mr Kramer: Because I think it can affect the way decisions are made. If you are thinking of the best personal interests, it can mean starting from the individual, thinking how the individual can communicate, how we can break down facts to a decision, how we can ensure the right support, how we can ensure the environment is suitable to allow decisions to be made in the calm environment, so looking at the nature of the decision, the timing of the decision and the use of communication methods, the word "personal" would promote good practice in all of those areas.

  Q157  Lord Rix: How would you protect the best interests of the person with a learning disability who already has perhaps limited powers of decision-making, but then those powers are gradually diminished through age or mental illness? How would you see that the Bill should be written to protect such an occurrence?

  Mr Kramer: I think the Bill does recognise that capacity can change, that people can develop incapacity with time and experience and, as you say, as people grow older they may develop dementia and lose capacity. I think that is recognised by the functional test and I think that is also recognised by the "best interests" test which allows people to participate in decision-making where they can do so, so someone who develops dementia may have a reduced capacity to make decisions, but they still may be able to participate in the decision-making process and should be encouraged to do so, so I do think the Bill is flexible enough and recognises that.

  Q158  Lord Rix: Good.

  Mr Broach: There is a second point there perhaps as well which was, as was mentioned by the witness from Enable, it should be possible for people with moderate learning disabilities to make powers of attorney and we must not forget that those powers could also apply to someone who has a disability and someone to represent him, but has capacity to endow that power to them, so in that situation of ageing and potentially coming on to dementia, they could make a power of attorney as any of us could.

  Q159  Baroness Knight of Collingtree: Many years ago when I was a local councillor, I called on a lady whose condition worried me greatly. She was dirty, her house was filthy, her clothes had not been washed, I do not think she had had a bath in ages and, as far as I could see, she was not feeding herself properly. I finally, after a lot of effort, got her into a local hospital which she strongly objected to going to at all. I went to see her in it and there she was in a nice, clean bed, looking lovely and clean, but she died within a week. I have always been worried about what her best interests were in that case because I am horrified to say so, but I think her best interests were to be in her own filthy home and I still do not know, my Lord Chairman, whether I was right or wrong and I believe that I was wrong. What do you say?

  Mr Broach: I think that is a very telling example, but I think there is a step before that perhaps which is that if this Bill becomes law, you would not have been able to take the lady into hospital unless you could demonstrate that she was not able to make that decision for herself. It is quite possible that although she was living in circumstances that were not ideal, she was able to choose to live in those circumstances and, therefore, she would not fall under an inability to make decisions as set out in clause 2.


 
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