Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 660-671)


21 OCTOBER 2003

  Q660  Chairman: I think Mr Brookes wanted to say something.

  Mr Brookes: Regarding your question round the scenario, about what that person wants, if he is happy then maybe he could stay where he is or if not something can be done so that he can get the right attitude of moving out independently if time is spent with him so that he has options.

  Mrs Browning: Okay, thank you.

  Q661  Huw Irranca-Davies: A very straightforward question, I listened with interest to what you were saying so far, in terms of the individual rights of people within your organisations is this Bill a retrograde step? Is it simply a formulisation of what we currently have in the common law or is it an improvement in terms of the individual rights?

  Mr Lee: In the words of our members at our AGM, which we held in August, this Bill will set the self-advocacy movement and the advocacy movement back 20 years. That is the view of our members.

  Q662  Mr Bercow: Mr Lee you have just made reference a few moments ago to self-advocacy, reference has already been made to advocacy and you referred to it again in very stinging terms just now, I wonder if building on what you just said I can ask you in as precise terms as one can what given a freehand you would like the draft Bill to say about a person's right to help from an advocate and if you can exemplify what in a practical situation the difference would be? With what frequency should there be such access, on what terms, et cetera, at different stages of decision-making? If you can try from my point of view as a layman to exemplify what the practical difference are. I am very, very struck by you saying this sets us back 20 years, what would set us forward 20 years?

  Mr Lee: There should be a mandatory right to an independent advocate whenever a person's ability to make a decision is questioned.

  Chairman: That is very succinct.

  Q663  Mrs Browning: Can I ask you, this Bill has been seen to be a Bill that would resolve a problem which is not infrequent and was typified by the Bournewood case, where a young man with autism was taken into the mental health inpatient services and sectioned under the Mental Health Act and where the only people really who knew him well enough were the advocates on his behalf, his carers with whom he lived, were denied access to him and were not listened to by the medical profession who made decisions about him. It is a case before the European Court now. We are told that this Bill will resolve that sort of problem and I just want to ask you if in those set of circumstances an independent advocate be as effective as the people with whom that young man had lived for many years?

  Mr Lee: I think they would be more effective, an independent advocate would be more effective because an independent advocate would be able to take a step backwards because sometimes if you are too close to a situation you cannot see the whole picture. If I might be able to give you an example. I actually helped a friend of mine who has a learning difficulty and has a mental health problem as well. What we found was that the people who support people with mental health problems are not trained and do not understand people with learning difficulties and those who support people with learning difficulties are not trained in mental health. The result is you get a yo-yo situation between mental health people who say, "it is not my responsibility, it is the learning difficulties people who are supposed to support people with learning difficulties" and they say, "it is not my responsibility because you have a mental health problem". The result is that a lot of people with learning difficulties who have mental health problems do not understand how the Mental Health Act actually works and so people that are supposed to actually be there to act in their best interest end up making decisions for them because it is quicker. It is quicker to make a decision like that rather than involve the person and take the time to actually make sure that they do to the best of their ability at the time. There is not such a word as "cannot", a lot of people say "we won't" and that is people's problem if they think that you won't or that they can not be bothered to actually sit down with a person with learning difficulties and go through their options because they are time pressured, they have too much on their hands. Based on me helping my friend I can tell you that the Mental Health Act fundamentally lets people down with learning difficulties and who have mental health problems.

  Q664  Mr Bercow: I just want to pursue this, this really is the nub of the matter, your explanation that an advocate should be available whenever a person's capacity to make his or own decision is questioned was admirably succinct and clear but it is clear as a point of procedure rather than as a point of effectiveness, what I mean by that is presumably your insistence on this entitlement, which is very clear, will be effective only if the balance of power provided elsewhere in the Bill is changed. In other words, you can have an advocate—who tend to be paid by the word—and on any occasion you care to name, you may think it is a matter of proper procedure and someone is entitled to such an advocate and they should be available but unless the principles of the Bill and power relationships of the Bill, in terms of who is authorised to determine best interests, change in accordance with what you probably prefer it will not make as much a difference as you want. I am sorry if I have not expressed that clearly.

  Mr Lee: Okay. The thing is that our view is that parents or carers cannot be independent advocates because they are too close to actually make sure that the person with learning difficulties has a number of choices, a number of choices to the best of their ability. We now have enough technology today to make it possible to actually give people with learning disabilities with high support needs the ability to make sure their own decision rather than a case like, if I can give an example of one of our members that spent most of his time, apart from going to a day centre, sitting in front of his four walls because the local authority that he lives in says that it is too expensive to give him choices because the level of support he needs requires two support workers. The result on paper says that he should have choices but in reality he has no choices at all and he actually put an article in our newsletter to that effect because he can make his own decisions but because people actually cannot be bothered to sit down and understand his communication difficulties, where people who are experts in communication can train the people that support him closely and can actually help him to make those decisions which would result in him living a fuller life and doing what he wants rather than what the local authority can afford.

  Dr Collins: I wanted to come back in the Bournewood case, the question was would this Bill solve that particular problem? In my view it would not because the man who was taken in would still have been taken in under the authority of the psychiatrist in the same way that happened this time. It would be worse for L because this Bill would have given the hospital the authority to do it whereas in fact it was questionable that they did it because he was taken in as a voluntary patient when in fact according to the people who knew him best he was not voluntary because of all of time he was in there he lost weight and became very distressed, and so on. So I do not think this Bill will have solved that problem. What would go a enormous way towards solving all kinds of problems for people with learning difficulties and for their families is to involve in the life of the person with learning difficulties other people besides purely the family or purely social services or those officials, formal people who are involved. If decision-making in somebody's life was something that was done with the person with learning difficulties, with the family, with any services or others and with an independent advocate who can have on overall view of the situation you not only have the situation where there is automatic monitoring and safeguarding of the person but you have other people involved in those circumstances who can question each other, "Why do you recommend this? Why do you think this person wants that?" That can be going on all of the time. You can also share the responsibility so when you reach a stage where the parents are getting very old and reaching a point where they can no longer care or reaching a point where they really want to see their son or daughter settled somewhere else you have already got other people involved in that person's life and decision-making is shared round, it acts as a safeguard. You can also use this structure to help supported decision-making, which is an essential feature for people so that they can be brought to understand the decisions that are being made.

  Mr Downs: The atmosphere in the room for the last half hour has been electric because you have disabled people and representatives of disabled here. In terms of best interest the people that you have invested your trust in in the past in common law are suspect and it does not necessarily work in our interests. On what Angela was saying, if carers came in and were involved and had a better idea. There is a tension there and that tension can go back to, "is this person capable of making a decision? If they are not capable am I responsible, am I doing the right thing, am I protecting this person?" That is exactly the reason we are talking about the process, whereby the responsibility for that person's rights are set. It would be recognised in Lord Rix's point that there is an issue about time and there is an issue about bureaucracy and the difficulty that would cause. We are saying our lives are worth protecting, our lives are valuable, the situation as it stands now is potentially very, very damaging to us and it is time for a change. The Mental Incapacity Bill as it stands at the moment is retrograde because it only confirms the current situation, it does not confirm the rights that we should have.

  Q665  Lord Pearson of Rannoch: I wonder if I can put a question to Dr Collins, then a secondary one to the rest of the panel. I hope the question does not seem pedantic. In your researches and your research activities have you sort of attempted to cost your proposals, particularly the advocacy side of the proposals? We can all agree that the money ought to be there for whatever the right solution is but one has to wonder whether it will be. Secondly, speaking as a parent of a daughter with severe intellectual impairment, my daughter could not possibly sit on this panel today and partake in this really excellent performance. Can I ask if you can appreciate our worry as parents that your proposed advocates may not in fact in the end come to act in the best interest of our family member who, forgive me, as I think many of us feel, we do know better than all of the professionals put together. I admit, of course, you are right; there will be some parents who get it wrong, perhaps with the best intention in the world, perhaps not, but I think many of us feel that on the whole as parents who have been caring for their children for many, many years—I am targeting the question on the severely intellectually impaired or those with severe learning disabilities or mental handicap, whatever you want to call it—can you understand that from our point of view? Dr Collins, first, what about the money?

  Dr Collins: Your first question, we have not costed it. What we are talking about is what systems could be put in place, what can be put round people, people themselves, ie are the people with learning difficulties going to feel comfortable, who are the people in their natural networks who should be involved in the decision making. What we arguing are that it is not right for one person to be in control of another person's life and that decision making needs to be shared and incorporate the views of the person with learning difficulties however severe the learning difficulty maybe. I think it is irrelevant how severe the learning difficulty may be as far as their view is incorporated into the decision making is concerned. However severe the learning difficulty may be everybody has a preference, everyone has a like, a dislike which can be discovered, which can be found out by people working that person. It is essential that that person's views are elicited, discovered and do hold a central point in all of the decision making.

  Q666  Mrs Browning: I want to test again this question of carers and parents, again coming back to the Bournewood judgment, do you realistically think that independent advocates would continue to challenge the views of the psychiatrists to the extent that they took the case to the House of Lords and on to the European Court or do you think that, for example, as in many parents do just trying the get the right package of support, the basics where they challenge social services and health and ultimately very often this is happening all too frequently in my casework and if they do not get their rights they test it in the court. I raised this with Social Services when they gave evidence to us because increasingly Social Service departments are finding themselves challenged in the courts, and I think quite rightly so, are independent advocates and independent witnesses going to have the resources to take a case that far or are they going to succumb to what the doctor says in his professional opinion is the case of L of X or whoever?

  Dr Collins: The position is that there needs to be a range of people involved in the decision making for somebody it is not a case of this person or that person, it is a case of a range of people involved which would be the family, the foster parents in their case, foster family, and it would be the independent advocate because you need that range of people who can see things from different perspectives actually saying what they think the person actually wants. What we have to remember is that the important person is the person in the centre, the person with the learning difficulty and how do we get what that person wants. In the Bournewood case, nobody, apart from the people he lived with, nobody was asking what is best for this person. We have been talking about best interest decision making I know that is what in the Bill. What about decisions being made that benefit the person, which is what the Adult with Incapacity Act in Scotland says, "no decisions are made unless they are of benefit to the person". That is different from best interest. It puts the person clearly at the centre. You cannot intervene in somebody's life unless you can clearly demonstrate that it benefits that person.

  Mr Lee: The main difficulty with this Bill is there is no formal complaints procedure. There is no way of challenging a decision that has been made that you disagree with. In Scotland, the systems that they have been swamped. When I asked Rosie Winterton, MP, about how you would deal with this, she said, "We do not really know." If you had a decision made for you and you disagreed with it, you would want to complain, would you not? This Bill is saying there is not any complaints procedure. Plenty of our members have tried to use the existing complaints procedures that are around at the moment but they have not been taken seriously. The complaints have not been properly followed through they way that they should be. The existing system does not work for people with learning difficulties. There needs to be a way in which people with learning difficulties can challenge things. I used to be a lay assessor for Hertfordshire Inspection Unit and I found that people with learning difficulties living in a wide range of residential homes raised issues with me that they would not raise with an independent person who did not have a learning difficulty. It opened a can of worms for the local area that I was in. The only reason this came to light was that people with learning difficulties were able to speak to independent people with learning difficulties that they felt they could trust and something would be done.

  Q667  Baroness McIntosh of Hudnall: You talked about people with learning difficulties because that is what you are here to represent. The Bill does not only seek to serve the interests of people with learning difficulties. It seeks to serve the interests of a number of other people who, for different reasons, suffer either permanently or temporarily from difficulties in making decisions. Would you say the same things that you said on people with learning difficulties about all those other groups as well?

  Mr Downs: I work for a disabled persons' organisation and everything I have said in this room has been said about disabled people.

  Q668  Baroness McIntosh of Hudnall: You would include people who suffer from injury and are incapacitated as a result of that or people who suffer from dementia, having been people with capacity who have become people without capacity? Everything that you have said on behalf of people with learning difficulties you would equally apply to those other groups, would you?

  Ms Aspis: When we did our support on the decision making in the Bill, we had all disabled people in and this structure we propose would ensure that the responsibility for decision making is shared and that it would be based on self-interest as opposed to best interest of that person. We understand our self-interest is likely to be different from other people's perception of what is best interest. We also think that this panel will be flexible enough to take on the needs of people who may be temporarily incapacitated. If they have depression, they will be involved in the decision making process for a limited time and then, once they are well enough, the panel would not be needed any more. You can see how it could be used for people who might be temporarily incapacitated in the traditional sense. We would like to stick to people who temporarily cannot make decisions or people who are unable to make particular decisions at that time as opposed to being incapacitated.

  Q669  Baroness Knight of Collingtree: The Bill has to deal with a great deal of variation and this is one of the problems. I was immensely impressed, reading about Mr Mac Given who said he had been bossed about by people telling him what to do, what to eat, what to wear and where to go on a day to day basis. That struck horror into my world when I read that. Realising the variety of cases that we are trying to deal with here in the Bill I come on to what was said earlier on about the concerns on the general authority. I particularly put the question to Dr Collins because these words too which you put to us are extremely chilling: "The general authority represents a potential threat to the safety, satisfaction and well-being of anyone at risk of being judged to lack capacity." When you went on to tell us about what ought to be done, which is not being done, you mentioned that there should be a range of individuals. Is it that you feel that the fact that there is no overall plan for the person agreed by everyone; that there is no form of monitoring how the person is getting on under all these rules and, finally, I think Mr Lee said earlier there was no way to complain?

  Dr Collins: Absolutely. The reason I say that it puts people at risk is that under the general authority it would be perfectly possible to have just one person making all the decisions for another person without anybody else having any input, without anybody checking to make sure that the person was happy with those arrangements, without any outside influence at all. There is no monitoring. There is no way of checking if the decisions being made are what the person wants. There is no way a person can complain or challenge. How do you, as the person who is said not to have capacity, challenge the person who says that you do have capacity? Under the general authority the person who takes on the general authority does not even have to submit to the assessment about someone lacking capacity. People are assumed to have capacity until proved otherwise unless you come under the general authority because then all it requires is for somebody to reasonably believe that you lack capacity, with no formal assessment. As long as somebody reasonably believes that you lack capacity, they can make any decision whatsoever provided that they reasonably believe that it is the right one.

  Mr MacGiven: There should not be a general authority because when I went to complain there were still no better complaints procedures. When I tried to make a complaint about things to do with my life about people bossing me around, the point was not taken up.

  Q670  Mrs Humble: As somebody who has worked over many years in developing advocacy services and as the president of Blackpool Advocacy, I have become a little concerned that in this debate about advocacy not everybody understands what the Independent Advocacy Service does. Do you agree that it is important that, if we do say to government, "This Bill should have references to an independent advocacy service" we define what we mean by it and that the advocate is the voice of the individual? It is not somebody who says what they think is in the best interests of the individual; it is not somebody who looks at the situation in the round and is weighing up professional, clinical judgments and the individual. It is the voice of that person. Do we need an advocacy service? If so, how should it be defined in the Bill? Secondly, would some of the concerns that you have outlined be satisfied if there is a comprehensive statement of principle at the beginning of this Bill that also links in to, for example, the Valuing People document that the government published two or three years ago? That makes very clear references to people with learning disabilities and the need for advocacy services to represent them. This Bill has been presented to us as a very narrow legalistic document. It clearly covers people in a non-legal setting, in a non-clinical setting, in a community setting. How can we make it work for you and the people you represent?

  Mr Brookes: There has been a big debate on the definition of advocacy and it is still going on. I do not think you can get a clear definition. Several organisations have their own definition of what advocacy is. That debate will go on for years. Regarding Valuing People, I think it should be put into this Bill. It is not in it. It all depends on people's circumstances, where they are living and how they can make decisions if they are capable. We did some research around decision making which will be sent to you. I did a workshop. I did a tour all over the country and spoke to about 200 people with learning disabilities. There was a wide range of people who were living at home, in a hostel, or in a shared home. They were happy with some of the decisions that were made but they were not being listened to.

  Q671  Chairman: You say that it may take years; we have until the middle of November.

  Mr Brookes: I heard it had been extended for another two years.

  Mr Downs: Bearing in mind the importance of the timing, I have been involved in advocacy for 12 years. Defining advocacy has been difficult for the advocacy movement. I remember I attended a meeting which came with a two page definition of what advocacy was which I found quite helpful, obviously, but Advocacy Across London has devised an advocacy charter which something like 130 advocacy groups have signed up to. In that charter it says that advocacy is taking action to help people say what they want, to secure their rights, represent their interests and obtain services that they need. Advocates and advocacy schemes work in partnership with the people they support and they take their side. Advocacy promotes social inclusion, equality and social justice. That is a pretty fair definition.

  Chairman: That is an excellent way in which to finish what has been a very helpful session. I speak for all my colleagues when I say that this has been very thought provoking for us and it will be extremely helpful when we come to draft our report. Thank you very much indeed.

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