Oral evidence

Taken before the Joint Committee on the Draft Mental Incapacity Bill

on Tuesday 21 October 2003

Members present:

Carter, L. (Chairman)

 

Barker, B. Mr John Bercow

Fookes, B. Mrs Angela Browning

Knight of Collingtree, B. Stephen Hesford

McIntosh of Hudnall, B. Mrs Joan Humble

Pearson of Rannoch, L. Huw Irranca-Davies

Rix, L. Laura Moffat

 

__________

Witnesses: MS SIMONE ASPIS, Director and MR RICHARD DOWNS, Changing Perspectives. MR ANDREW LEE, Director and MR NICO MacGIVEN, Campaign Officer, People First.

DR JEAN COLLINS, Director and MR MARK BROOKES, Values Into Action, examined.

 

Q645  Chairman: Good afternoon, I would like to welcome you here. I would like to thank you for your written evidence, which is very helpful, and also finding the time to come and help us this afternoon. As you know the session is open to the public, it is being recorded and broadcast and if you are interested it will be on the Parliament Channel at 6 o'clock on Sunday evening. There will be a transcript of the evidence which you will see and if you wish to correct it you will be able to do so. If there are divisions or there is a vote in either House I will have to adjourn for about ten minutes while either the peers or the MPs will have to go and vote. Even though we have microphones in this room the acoustics are not particularly good, if you would speak up it would be helpful. If we are unable to reach all of the questions we sent to you in advance and you want to write to us afterwards with your views on those or any of the exchanges that we have afterwards that is entirely in order. Can I suggest that you might like to introduce yourselves. If any of you wish to make a statement at the beginning this will be the time to do it.

Mr MacGiven: Nico MacGiven, Campaign Officer for National People First, an organisation for people with learning difficulties.

Mr Lee: I am Andrew Lee, I am a Director of People First. I have also been a trustee of POhWER, the advocacy agency in Hertfordshire which was awarded the ICAS bid for Hertfordshire. I have been in the self-advocacy movement since 1994.

Ms Aspis: My name is Simone Aspis, I am a Director of Changing Perspectives, we do dissipated quality training and consultancy on a wide range of issues around disability and support various campaigns on disabled people's rights.

Mr Downs: My name is Richard Downs, I work for Brent Advocacy Concerns as a coordinator. I am here today as a support to Changing Perspectives. I specialise obviously in advocacy.

Dr Collins: I am Jean Collins, I am the director of Values Into Action, which is a research and development organisation. I work purely to improve the prospects of people with learning difficulties.

Mr Brookes: My name is Mark Brookes, also of Values Into Action. I have been an advocate for self-advocacy groups all across the country around the White Paper and have been involved in advocacy for about 15 years now.

 

Q646  Chairman: Thank you very much. Did any of you wish to make a statement at the beginning, a short statement, or shall we go straight to questions? Shall we start with the questions? Can I ask you, you have seen the draft Bill and you have sent us some very, very helpful written evidence, could I ask you first what you do not like about the draft Bill?

Mr Lee: The general authority to act is open to abuse. Paid carers and relatives could say that we cannot make a choice because it is what is best for them rather than best for people with learning difficulties. This will go against the aims of more choice and control for people with learning difficulties in valuing people, for instance living independently or having relationships. It goes against the human rights, for instance rights to freedom, rights to family life and rights to privacy. Our members have told us about their relatives and paid carers bossing them about, this shows that it is unwise to put our faith in these people to really allow us to make our own choices. There is no easy way for people to complain. It is no good relying on social services' complaints procedures because they do not work and many people do not know how to use them. There is no complaints procedure for relatives or neighbours stopping you from making a choice.

 

Q647  Chairman: Thank you. Does anybody else want to comment?

Ms Aspis: Continuing from the list we would like to build on the list that people have first set and we have identified some additional concerns. The first voice does not start from the perspective of a right to make decisions it starts with the perspective that people are unable to make decisions, so it does not start from the basis of rights. The definition of incapacity and also the difficulty in terms of defining what capacity is are both subjective, which means it can be open to abuse by relatives or anybody who could really reasonably decide whether somebody else has the ability to make a decision for other people. On the other hand if you go for an objective perspective you then start going back to IQ testing and other ways of assessing decision-making as to whether somebody has the capacity to make a decision. That cannot be the right way to do things because we all make decisions in different ways. It also starts from the place that people must always make a decision as well so therefore there seems to be no room for people who for one reason or another might choose not to make a decision. It also starts from the place where people might wish to say no to a choice that is being made. We also think there an assumption, it starts with a person's deficit, so a person is unable to make decisions, as opposed to looking at the reasons why somebody cannot make decisions based on external factors like communication support and past decision-making experiences. We also think it goes against the principles of the Human Rights Act.

Mr Brookes: A couple of things, one thing is it was not accessible for people with learning difficulties. The other thing is that it is supposed to be about valuing people, there is nothing in there about valuing people. There is no advocacy in there and there is nothing about planning for people.

 

Q648  Chairman: Would you think that since the Bill actually does say that everybody is assumed to have capacity and anybody who wishes to question it has to proof otherwise, do you not find that helpful that it is assumed that everybody has capacity and then you have to show people that they do not have that capacity? Do you think that is helpful?

Dr Collins: One of the problems with that is there is an assumption that you either have capacity to make a particular decision at a particular time or you do not have capacity to make that decision whereas in fact in real life all of us have varying levels of capacity round particular decisions. It is very seldom that we can instantly make a decision by ourselves, we tend to look for help, advice and support from other people and the amount of that support from other people will differ enormously between different decisions. One of the problems is that you assume that you have capacity or you lack it. There needs to be a provision within the Bill for people to be able to receive support, to use support to help them work towards making decisions in exactly the way that the rest of us do, although perhaps we need less support most of the time, but nevertheless many, many people with learning difficulties can reach a decision if they are given, the kind of support that people need over a period of time and that takes into account their particular problems.

 

Q649  Mrs Browning: Could I just ask following on from that, how do you envisage that support helping people with a disability where they have difficulty conceptualising something that is outside their own experience because very often for that group of people if you give them a choice of two or three options they cannot visualise what that would mean to them as individuals. How would you see the support they need? Would you suggest that no decision should be made until they have been, say, taken to see what the three different housing options are or is that where the independent advocacy would come in?

Dr Collins: It depends on the type of decision they were making. If it is a decision about where somebody is going to live time does need to be taken to take people, perhaps not only just to see what the house might look like or the flat but to enable people to have the experience of living in it for a period of time in order to find out if it is something that they want to do. People need to have the opportunity to actually experience what is being offered to them. If it a less important decision, if it is not such an important decision in someone's life they might not be able to vocalise their views but they will have a view, they know what their likes and dislikes are and people round them need to work with them to find out what it is that they like and what they do not like and how that can then be expressed in the decision that needs to be made. For example, how does somebody want to spend their days, should they go to a day centre or should they be supported to do a variety of different activities? The person may not be able to give a straightforward answer to that question but the people round that person knows when they go to the day centre they can become very distressed or when they go swimming they have a great time. It is about knowing the person and it is about using their reactions, which may be extremely helpful. What I am arguing about is that even in relation to one decision at one time somebody might initially appear not to have the capacity to make a decision but through working with that person, helping them experience different situations they can demonstrate what they like and what they do not like and what the person is indicating is itself a decision. You can bring somebody to the point where they can make a decision even though they are not verbally saying it.

 

Q650  Baroness Fookes: The Bill does actually allow for that, it seems to me it is concerned not so much with the wording of the Bill but as to how it might be implemented in practice?

Dr Collins: You say the Bill allows it, it does allow it but it does not say it has to happen and for people with learning difficulties it will not happen.

Ms Aspis: There are problems, it does not start from the right space. There are no rights, it does not say the right to advocacy, the right to decision-making, the right to personal centre planning, it does not specifically say those rights. It does start from a different place, it does not start from the right to make decisions and the support that is needed. In terms of the definition we would like to see something different from incapacity which may be kicking in with the process when somebody cannot make a decision as opposed to when a person is labelled to be capacitated because then it allows a much more objective view if they want to make a decision as opposed to whether the person is or is not able to do so.

 

Q651  Laura Moffatt: Mr Brookes you said something very interesting, you said the Bill itself was not accessible, I just wonder if anybody or you yourself could say how that could be better the next time or what lessons can we learn before the Bill comes before us? Coming out of the second part of that conversation I am clear in my mind that the Bill is more effective for those who lose capacity and for those for who decisions have to be made and already this debate in the short-term has exposed it is very different from having a learning disability. My sister has worked with people with learning disabilities, she now runs a bungalow for a health trust for lots of people who have learning disabilities and their decision-making processes are very different and I think we need to explore that much more today so that we can be very certain that this Bill is going to do the business for people with learning disabilities.

Mr Brookes: The first one first, I do not know if the group or whoever wrote this worked with people with learning disabilities, maybe you could work with people with learning disabilities to help write it so there is a lot more pictures, a lot more shorter words, not 120 pages long like the White Paper when it first came out, and I actually read that from cover to cover.

 

Q652  Laura Moffatt: You beat me.

Mr Brookes: Yes, it took a long time. I think that answers that question. Perhaps do not do just one draft, if a couple of things do not look right you can go back until they are. Your second question, I will give you a for instance, I was at the Orchard Hill Hospital - I went on behalf of another organisation, I belong to the National Development Team - and I was accompanying someone round. It is dreadful, it is a shocking place to go. Some of the people there could express when they were happy and when they were sad, we took one young man out and he was smiling all the time because there they do not get to go out much for walks. I think people can express it in some way. I have also worked with quite a few people on a one-to-one basis and if you spend time with them you have to be patient with them. You have to patient with anyone who you work with, even Jean has to be patient with me! It is about understanding and a lot of the time knowing what they want. It can be done. Thank you.

 

Q653  Stephen Hesford: General authority open to abuse. Can you help us on this, does the Bill add to the current problems, ie what the common law currently does or does it add to it, is it the same as or is it better? At the moment I do not have a general understanding as to whether this Bill creates an offence by its very existence or whether it is just might be what you want in an ideal world?

Dr Collins: As is currently drafted in my view this Bill legalises what is currently done by and large unlawfully in terms of decision-making being done on behalf of other people. At the moment because the law is so unsatisfactory many, many decisions are made for people with no legal basis. This Bill if it were to go ahead would legalise that position without ensuring those decisions are what people want and without ensuring that people's views are properly and thoroughly taken into account, it would actually worsen the situation of people with learning difficulties.

Mr Downs: I would agree with that totally for people with learning disabilities. I think the Bill fails to recognise the reality of the lives of disabled people through general authority and it accepts that a lot of people have already shown they cannot be trusted with these best interests and are being put in a position where they can say, "I did this because I was acting in your best interests". If their best interests are the same as what I think is in my own best interests then I do not have any recourse through this Bill.

 

Q654  Lord Rix: Could I ask Mr Downs and Simone if there is so much wrong with the Bill if they think we would be better off without it or would we be better off with a similar Bill but with a more positive approach to the problems you are listing. For instance instead of being called the Mental Incapacity Bill if it was called the Supported Decision-Making Bill, if that was carried through the Bill in the clauses as a theme, as it were, would you consider this to be more acceptable?

Ms Aspis: Can I move on to ensure that Nico gets an opportunity to respond before I answer your question .

Mr Lee: This is in answer to Mr Hesford's question.

Mr MacGiven: The "General Authority" is too easy to abuse, it puts too much trust in relatives, staff and others to really support people to make their own choices. Lots of People First members have told us that relatives and staff do not support them to make their own choices. Our members told us that they are bossed about by relatives and staff and that decisions are made for them that are really best for the relative, paid carer or service provider. For instance, people who need support to go out will be stopped from going out by services providers because the service provider has not paid for enough staff to provide support for the person to go out. More authority will mean that over-protective relatives, paid carers and other people will be legally able to stop us doing things that we could do. Paid carers, relatives and other people will be able to use general authority to control people with learning difficulties to suit themselves. If challenged they just say that they thought the person with learning difficulties could not make their own choice and they getaway with it. Another problem will be that people will say that it was unreasonable for them to think that someone cannot make a choice just because someone has learning difficulties.

 

Q655  Chairman: Thank you very much, that is very helpful indeed.

Ms Aspis: I will answer your question, we would like to recommend a Supported Decision-Making Bill so it starts in the right place. It would be based on rights and the following rights would be: to make our own decisions, the support to make decisions, to communication support, to make mistakes, the right to advocacy, to make decisions without pursuing incapacity, to change our mind, to have a personal sense of money, to access supportive decision-making panels --

Mr Downs: I will talk about that later

Ms Aspis: -- access to information, to explore decisions, which is what Jean Collins was talking about, the resources to make it happen, the right to say no, the right to complain and appeal and to know that bad practice can and will be penalised, to have decisions affirmed and the right to be respected for your self-interest.

Mr Downs: What is interesting about this is that Simone and I met yesterday with each other yesterday at 3 o'clock and by 8 o'clock we came up with this solution to this problem. I have a problem with the process because I do not believe enough disabled people and disabled people's organisations have been involved in the consultative forum. There is some difficulty because again the people who were typically assuming the general authority are the people who make the decisions for us, when we actually want to make them ourselves, and have been involved in the process. Having looked at the Bill from a position of rights we recognise the fact that we have to have a process that enables those rights to happen.

 

Ms Aspis: The way we would keep this in would be to first of all say that out of necessity a person can act on behalf of another, as they do at the moment within the common law and then the process will be kicked in as soon as there is any doubt about whether somebody can make a decision, as soon as somebody feels that a decision needs to be made on behalf of somebody else that is not necessary because this process will be kicked in.

Mr Downs: We are talking about a decision-making Bill which is for a supported decision-making power to be set up which when capacity is in doubt and it will act from a code of practice to be agreed as acceptable to disabled people. The panel shall have the power to provide guidance to the people involved. The panel would have the power to review any decision which is made in the name of best interest and it would have the power to call for an independent complaints panel and an appeal. It would have an obligation to create a stir if it registered something like a court of protection, and I acknowledge a court of protection has often failed disabled people. It would have the power to initiate a decision-making assessment of the recommendations from which it must be implemented. Again we say that advisedly inasmuch as local authorities are not recording the feelings of disabled people. It would have a responsibility to ensure that our rights based framework is observed. The person who would make a best interest decision would also be able to seek a second ruling from the court if people's opinions are in conflict. The reason we are proposing to have a Bill like this and a process like this is because basically common law has failed to protect the interests of disabled people.

 

Q656  Lord Rix: How would you protect the people with a learning disability who had profound multiple disability because clearly going through a bureaucratic process would be virtually impossible at any sort of speed of any kind? How do you deal with that?

Ms Aspis: We basically see this as a similar model where a court rules when a young offender gets convicted there is the first time offenders panel and they will meet regularly with that person to help them and this would be the same order for disabled people who need support making decisions. The benefit would be that in an on-going process where they would be reviewed, people would be involved or a programme would be set up, so it would not be like the court deciding this person is incapable somebody else has to make that decision, it is usually one person makes that decision under general authority. This will give more safeguards towards people who have profound learning disability because there would be more people acting in their interest than one person.

Mr Lee: In relation to your question, the Bill could give a right to communication aids that people need with enough funding to do this properly. Paid carers and relatives should have proper training and support from communication experts so they are able to deal with the communication needs of people who find it hard to speak up. People who have communication difficulties and whose ability to make their own choices is being questioned should have an independent citizen advocate.

Chairman: You are answering quite a number of the questions we were going to ask you, we are doing very well on the framework.

 

Q657  Mrs Browning: I want to put to you scenario, if I may, I listened very carefully to what most of you have said. In terms of the parent I am must declare an interest, I am a parent and whether I am dealing with issues to do with my son who does have a learning disability or my other son does not we very often disagree quite vigorously on all sorts of matters, and I think that is life and that is always going to continue. I fully understand why you are making the case for your own independence free of what in your verbal and your written evidence you describe as "parents have a view". In one piece of evidence you say they might take a decision because of the financial implications for the person, I fully understand that. There is a worry for parents, and it is this, parents also feel they have a responsibility and it is a lifelong responsibility and sometimes third parties make decisions also based not on their knowledge of that individual but on the resources that are available to someone. It has been put to us in this Committee some of things you are advocating and some of the things that other witnesses have advocated to be incorporated into the Bill, I am not saying that is a the bad thing, I think that is a good thing but there would need to be a huge amount of resource behind this Bill for it to work because if they were there we would go back to the old business, a situation I find very unsatisfactory, that, for example, social workers are employed by the very people who provide the service and I do not believe they can represent you as the advocate. What do you do, and this is my question, Chairman, about the parents who are themselves very elderly still caring at home for the adult with the learning disability where that adult with the learning disability flatly refuses to become involved in any form of independent living because those parents as they get older know they are going to become frail, die within a matter of a few years and yet unless things are put in place during their lifetime for the person, the adult with the learning disability, it then becomes a decision taken in a crisis. This happens all too often and any decision taken in a crisis does not usually offer choice and does not usually offer appropriate provision. Where do we get the balance between parents who are trying to provide during their lifetime for adults and the needs you expressed very articulately today for your own independence, where do we strike the balance in the Bill?

Mr MacGiven: I am not complaining but if the person with the learning difficulty is living with an elderly person and if that person wants to live independently the elderly person would say, "you cannot do that because I will not get my pension otherwise".

 

Q658  Mrs Browning: I will agree they do sometimes but equally there are adult-dependent children still living at home with very elderly parents who out of fear or even a lack of resources themselves would be very afraid of making that big step, and it a big step, from the security of the parental home to independent living. I think that is quite a worry and problem for parents who can see that if it is not done in their lifetime it will be done under circumstances that will not necessary be in that child's interest.

Ms Aspis: Which is the reason why we would like to see a Supported Decision-Making Bill, where that decision-making starts from a much younger age than 16 and therefore you start that process of helping people to make decisions. This whole idea about resources seems to me to be about the priority of how we spend our money. If we are really committed to the fundamental rights of all humans beings to live with dignity then we must resource it. We do have the money out there in other governments departments that could be more usefully spent in doing things in terms of people making those decisions and to experience different ways of living and then it does not get to crisis point when a decision has to be made and where the person with learning difficulties is unable to make the choice.

Mr Lee: The thing is when people with learning difficulties are actually born the first thing many parents are actually told is your son or your daughter will never walk, never talk, they will be a complete cabbage for the rest of their life and the best thing to do is stick them in an institution, which is what my parents were told. The thing is that doctors and nurses and the medical profession generally start from the point of actually telling parents that their son or daughter will not be able to do things, which is completely wrong. The medical profession are using their strength to actually dash the hopes of parents at the very beginning and their aspirations are dashed and that is because doctors and the medical profession generally are not educated in the social model. I think that is something that Parliament could do as far as educating our medical profession so that they start from the position that a person with learning difficulties will be able to achieve things rather than the position of they will not be able to. If parents are actually given the confidence and are told that they will be able to do things and the information is accessible and it is there right at the very beginning, where they sit down with someone and they say "this is available, this is available and this is available and this is how you go about doing it" then their confidence will be boasted and their attitudes towards disability will be positive rather than negative and the person with learning difficulties for the rest of their life are fighting their parents and society generally. There needs to be a massive education programme and you need to put people with learning difficulties at the heart of it. All forms of advocacy needs to be at the heart of government policy if we are going to change decades of the way which society perceives disability, which is completely wrong. We are fighting against so many things and there is so much this Parliament can actually do about it.

 

Q659  Chairman: Okay. Would you agree that applies with all forms of disability.

Mr Lee: I agree with that but people with learning difficulties also have difficulties within the disability movement. If you take Mr and Mrs General Public when you talk about disability they think deaf, visual impairment, a wheelchair, not learning disability because learning disability is invisible unless you have Down's syndrome and that is actually wrong. If you have a strong point of view and you happen to have a learning difficulty then there is a kind of bracket that society tries to put you in and try to reduce you, your view is actually worth less than a person who does not have a disability.

 

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.

Chairman: Okay.

 

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, really 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, and I think many of us feel we do know better than all of the professional 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 Mac Given: 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.


 

Witnesses: DR MAURICE BROOK, MRS MARY PEARSON, MR DAVID SUGDEN, RESCARE; MR JAMES ALLEN, Care UK; MR SIMON CRAMP, New Dimensions Group and MENCAP, examined.

 

Q672  Chairman: Thank you all for coming. You heard all the housekeeping at the beginning so I will not repeat it. We are not preparing a White Paper on mental incapacity; we are working on a Draft Bill and that is why the questions you have seen have been structured around the structure of the Bill. Would you like to introduce yourselves?

Mr Allen: My name is James Allen. I am the development director with Care UK. We provide residential and nursing care for people with mental health problems and disabilities.

Mr Cramp: Simon Cramp. I am a trustee of MENCAP and a member of New Dimensions. I am also an independent consultant.

Mrs Pearson: I am Mary Pearson. I am with RESCARE and I am the mother of a 23 year old daughter with Downs Syndrome.

Dr Brook: I am Maurice Brook. I am a joint honorary vice-chairman of RESCARE. I am also a receiver in the Court of Protection.

Mr Sugden: David Sugden, a joint honorary vice-chairman of RESCARE and I have a handicapped daughter who is 35 years old and being very well looked after, thank you.

 

Q673  Baroness Wilkins: What do you not like about the Draft Bill?

Dr Brook: Very little. We like the framework it sets. If you push us to say what we do not like, I suppose we are echoing what was said earlier, but we have a certain amount of unease about a recognition that those who are mentally incapacitated from birth, or virtually from birth, have some needs that are different to the majority of people covered by the Bill who have long periods of perfectly normal capacity. That can be dealt with in the codes of practice.

 

Q674  Baroness Wilkins: That is how you would like to deal with it?

Mr Allen: I would like to thank the Committee for inviting us here today. I welcome the opportunity to speak as someone who supports the Bill and necessarily supports decision making and encouraging good communication in advocacy and human rights. If I were making decisions for somebody who could not do it for themselves, I would expect to be held to account. My main point is that we desperately need this Bill and I feel passionately that it is not an opportunity to be missed. Some organisations think that if the Bill were to become law it would take away more decision making powers for people. I feel this is not the intention of the Bill. There is a possibility in practice that this might be an outcome for some people but there is the general authority as a provision. At the moment, the general authority to act is too wide. Carers can decide almost anything without having to take formal authority. It is too difficult for someone who feels that their wishes have not been listened to to challenge decisions taken by someone else. I do not like the name of the Bill. It should be changed to "the Mental Capacity Bill" to reinforce the idea that it gives people the right to make their own decisions. I do not like the fact that independent advocacy is not included on the face of the Bill because it is putting people in jeopardy. Thank you.

Mr Allen: As a provider of residential nursing, I have four issues. There is the issue about conflict resolution. There is not enough emphasis in the Bill about the delays there might be about the resolution of conflict between various policies. There are concerns about maintaining independence. That is key to everything we do, providing care for people with mental needs. We have some issues about how to provide care that represents the best interests of individuals in a residential setting, because we have to consider the health and safety implications of a range of people within our settings. There is also an issue about advocacy which is not mentioned in the Bill. We feel that some conflicts can be avoided and resolved through advocacy.

 

Q675  Baroness Knight of Collingtree: Some, if not all of you, were here in the previous session and you will have heard what was said about the general authority part of the Bill. I would like to ask what you think about this. Particularly, would you tell us about any problems that you think might occur because of the general authority? There was clearly very strong feeling among those who have just given evidence and they did make some suggestions. All of us would like to hear your comments on what they had to say and what you feel about this.

Dr Brook: There was some misunderstanding about the nature of the general authority in the implication that it would be vested in an individual, whereas our interpretation of the Bill is that this is dealing with day to day decision making by any person who is delivering care. There could be many people involved. It is regularising for their benefit the position which obtains now in common law. We do not see the general authority as a danger, providing the person is committed to assessing whether the individual has the capacity to make a particular decision before they exercise this general authority. They will then be answerable afterwards and have to explain what their reasoning was in reaching that decision. We do not see any problem in the application of the general authority. We think it should be welcomed, certainly by paid carers who are sometimes in an anomalous position.

Mrs Pearson: I think it is important also to realise that we represent the families of people who have a severe learning disability, life long very often. The people we heard earlier have, as far as I could see, a lot of capacity. It is understandable that they could feel threatened by this Bill but, for the people we represent, I do not think that is the case.

 

Q676  Baroness Knight of Collingtree: You seemed to give the impression that once a person was defined as being incapable of making their decisions that was a permanent thing. Is that the case or not?

Dr Brook: As the Bill makes plain, it refers to a particular decision in a particular situation. For example, someone wanting to go out when it is raining inadequately clothed. A carer would very properly under the general authority make sure that they had protective clothing on before they went out. The individual might appear to be resistant to it.

 

Q677  Baroness Knight of Collingtree: That was not quite the point I was making. I just wanted to know whether you felt that, once a decision that a person was incapable of making decisions about his own life was agreed, that could never be gone back on.

Mrs Pearson: There is a reality about whether people can make a decision.

 

Q678  Baroness Knight of Collingtree: I appreciate that we are dealing here with more severe difficulties and that may be the basis of the comments made earlier.

Dr Brook: There is a range of incapacity from those who are virtually able only to be fed and give very little response to anything to those who can indicate a number of decisions. You do not classify an individual at any stage in the process, other than by having reference to their behaviour and their apparent needs. We do not have a legal system any more like we used to for classifying people ineducable or not, for example.

 

Q679  Baroness Knight of Collingtree: Do you think the suggestions made, for instance, about the possibility of a person complaining and the difficulty under the law of that happening are a problem or not?

Dr Brook: I do not think that is something the Bill is here to address. Most organisations now have proper complaints procedures. If an individual is having difficulty in gaining access to the complaints procedure, there are other ways of dealing with it.

Mr Cramp: I would slightly disagree with my colleagues about complaints because of access. Not everybody can reach the papers you have in front of you. There are communication difficulties. You could have a situation where somebody has not made suitable provision for complaints. That is the first problem. If I can come to the question of the general authority, I have the difficulty that it almost allows you to do anything.

The Committee suspended from 5.15pm to 5.24pm for a division in the House of Lords

 

Q680  Baroness McIntosh of Hudnall: It has been put to us by other witnesses that this Bill as currently drafted is potentially more of a charter for carers and service providers than it is a protection for people who may lack capacity to make decisions. Do you have a view about that? Can you tell us from your experience how it would be best for people with incapacity to be informed about what the Draft Bill could do for them?

Mr Allen: It certainly offers protection for carers which we are grateful for because it gives clarity about working in best interests. However, as a provider of care, we are regulated and monitored by National Care Standards and other organisations. There are regulatory bodies ensuring that we are fulfilling our obligations satisfactorily. In addition, we are monitored through care contracts and specifications to ensure that we deliver care appropriately. If there were to be an abuse of the carer's authority, that would be easily picked up through the monitoring that takes place.

 

Q681  Baroness McIntosh of Hudnall: It would be fair to say, would it not, that that applies to you because you provide your care in a formal setting? There are many carers who are not subject to that kind of monitoring.

Mr Allen: Certainly. I am talking about professional carers.

 

Q682  Baroness McIntosh of Hudnall: That is who you are here to represent. It is slightly unfair to put you on the spot about those people who do not do what you do but do you have any view about the Bill in general in relation to the authority perhaps that it gives to people who are not regulated in the way that you are?

Mr Allen: I think the Bill is fairly clear about what is and what is not permissible. Also, in terms of best interest, I think it is quite clear. Also, the additional assessment of the current protection gives a quite clear framework in my mind as to what is and is not acceptable.

 

Q683  Lord Rix: Do you think, on the other hand, that this Bill erodes the protective powers which we parents seem naturally to assume for our children? They will of course go on to adulthood. Should our protective powers then be diminished?

Dr Brook: On the contrary. We feel that our protective powers have been substantially eroded or are absent, once our children reach the age of formal majority. The Bill would help us. That is one reason why we need it. We think there is a need to make a distinction between family carers who are unpaid -- and they are the only ones who maintain a continuous interest and concern in an individual throughout life, giving unconditional love and affection -- and care workers who are paid and who change frequently.

Mr Cramp: In the Bill, if it was possible, I would want to make it separate, where paid carers are separated from family carers. The state saves quite a lot because of parents who are unpaid carers but in terms of the question of abuse, if you work for an organisation and you abuse anything, you will be subject to some form of discipline. With a carer it is more difficult. There is no formal power and we strongly recommend that there is some kind of distinction between them.

 

Q684  Baroness McIntosh of Hudnall: We did not get an answer to the second part of the question and I think it would be helpful if you could comment. Perhaps I can put it slightly differently. Can you comment on your responsibility within either a formal or an informal framework to ensure that the people to whom you provide care understand their rights and the protection that is offered to them by the Bill? Do you see yourselves as having a direct responsibility to interpret or ensure that the law is communicated or that the provisions of the Bill are communicated?

Mr Allen: Yes. We would have a responsibility to ensure that people were fully aware of their rights under the Bill.

Mr Sugden: From a parental point of view, there are going to be several occasions where the severely incapacitated will not understand anyway. There are degrees of this. Obviously one tries. Parents get more difficulties throughout the lives of these folk anyway. This is not a difficulty in my particular view or my wife's view, I am quite sure, because one naturally does this, but there are going to be some who simply will not understand, full stop. It cannot be helped.

 

Q685  Mrs Browning: Simon Cramp was asking for us to try and define on the face of the Bill between the paid carer and the voluntary carer, usually a close family relative. In what context do you want us to make this distinction?

Mr Cramp: If my parents were looking after me, I would want to make them unpaid carers. In a previous life, I used to work for social services, so that is where I see the paid carers. In terms of advocacy, there is a line where you get advocacy for the person. There are procedures, whatever the organisation or whatever is in parliamentary law, which are set in and they restrict what you can do. There is more of a legal footing if you abuse somebody in any criminal way. It is easy to go through the court system where family carers would find that perhaps more difficult.

 

Q686  Mrs Browning: Empowerment and the rights of individuals on the face of this Bill are the purpose of this Bill but in some cases the decisions which individuals wish to make may conflict with the wishes of the family carers and the care workers. Do you think the Bill makes sufficient provision for the resolution of such conflict and that people are enlightened in this area?

Dr Brook: A Bill like this and the codes of practice which accompany it is only going to begin the process of changing the whole climate of opinion and behaviour by all those concerned. It is not realistic to expect such a change to happen overnight, even if the Bill became an Act, but we would expect over time that in some cases through case law, established by reference to the Court of Protection, and in other cases through informal advice which we hope the Court will be able to give, as the Court of Protection has done in the past on financial matters, you begin to influence the climate of opinion making and behaviour. Some guidance on assessing the reliability of decision making by a person with a particular degree of incapacity is going to be necessary and we have some views on that too.

 

Q687  Mrs Browning: There is nothing on the face of the Bill about independent advocacy and a lot of witnesses have pressed us to consider including this in the Bill. What happens when you have a difference of opinion between the independent advocate and the carer closer to the person, perhaps the parent?

Dr Brook: We are assuming straight away that there will be an independent advocate.

 

Q688  Mrs Browning: I am saying if we were to incorporate that within the Bill.

Dr Brook: There are some considerations there. This is why there is recourse to the Court of Protection. There will be an earlier stage where one can get informal advice. The existence of the Court of Protection and the opportunity to go there to resolve disputes or to get a ruling which will establish case law is important. There will be some occasions when there is clear disagreement. Very often, they are about simple day to day matters and these need more independent discussion between the person who really is the decision maker and the person wanting to provide a service. It is a fallacy to imagine that a so-called independent advocate can come into any situation and very quickly become appraised of all the implications of the decision and almost make an adjudication. I as a receiver have been in a situation of having an advocate appointed by the local authority because they were in disagreement with my view about the provision that should be made for a person. I have known this person for 20 years. This person has no speech and a very low mental age. The advocate was totally at sea. In the end, what I wanted was brought about. Afterwards, it was agreed that it was the right decision. Had I not had the knowledge and authority to stand up to the advocate, the advocate would have endorsed what the local authority wanted, which I discovered afterwards was placement in a residential home where they had a block contract and a vacancy, regardless of suitability for the individual. This is a practical situation that occurs all the time.

Mr Cramp: I would agree to some extent but there is an element of risk with all this. Everybody is human. If we all looked like robots it would be a very worrying thing. We all make mistakes. As the Bill is drafted, perhaps there could be letters about complaints, perhaps some kind of panel that is accessible locally, made up of a lay person and someone from social services. I agree with my colleagues to some extent but if the independent advocate makes a mistake there should be some kind of mechanism to help that process through so that it is then transparent. There is no way that the person who makes the complaint is always going to have it upheld.

 

Q689  Mrs Humble: I want to raise the point again about defining what we mean by advocacy services. An independent advocate is usually a volunteer who has been trained by the local advocacy service. It is not an adjudicator. The advocate is the voice of the individual. Dr Brook, you raised an interesting point because you seem to be saying that for certain individuals who are profoundly handicapped their level of capacity or lack of capacity is such that they may not be able to communicate to that advocate. You used the phrase, "The advocate was all at sea."

Dr Brook: Yes.

 

Q690  Mrs Humble: How can we address the concerns raised with us by our previous witnesses that, for many people, even with very profound handicaps, if an effort is made to try and open lines of communication, they can act as the voice of that individual?

Dr Brook: I would challenge a good deal of that argument. The ability of severely handicapped people is limited obviously by their own intelligence. My son, mental age three; actual age 52, can clearly indicate decisions on what you might call immediate gratification: what he might want to eat; what he might want to put on for clothing, even though he might not get it on the right way round. We have known him for 50 odd years and it has taken a long time to understand some of his signals. There is no way in which a person coming in from outside would accumulate that ability to interpret his noises and signals and his happiness to be able to say with confidence that that is what he is choosing to do. The people who work with him have never worked with him for long periods of time because care staff are constantly changing. They would know him better even than bringing in someone from outside. The phrase "independent advocate" needs closer examination because most of the advocacy services are totally dependent on public funding. In my area, we have quite a lot to do with them. More often than not, they are influenced by what the authorities are wanting at any particular time. They are not closely associated with an individual. Citizen advocates, when first introduced, were aiming to do that. We had on our committee the longest serving citizen advocate in this country but there has been a very high turnover. It has taken her 40 years or so to get to know the person for whom she now advocates very effectively.

 

Q691  Mrs Humble: Given the caveats that you have outlined from your own personal experience about profoundly handicapped people, given your own experience of your own local advocacy service, which is not my experience of my local advocacy service, do you think there should be provision for advocacy services on the face of the Bill? If that is the case, how can we monitor the delivery of those services and look at the quality of those services, bearing in mind that advocacy services will be providing support and a voice for people not as profoundly handicapped as your child, people with variable handicaps and within the context of the whole of the provision of this Bill?

Dr Brook: Where people recognise the need to be assisted in expressing their needs or their point of view, yes, there is a need for this kind of service. We have to remember too that many people who are in regular contact with people with disabilities are in particular situations very much acting as their advocates. They do find out what they want and they do press the point. These can be teachers, nurses or psychiatrists. It is wrong to assume they are not doing that, although they may not use the term "advocate". When you come to having people acting independently as advocates, considerations of cost and availability become important. There are some important calculations that I have done for my local advocacy service which is multiplied nationally, implying tens of millions of pounds to deliver what is even now not a very adequate service.

 

Q692  Mrs Humble: Are you saying that you would not want us to argue for one?

Dr Brook: The codes of practice can deal with the recognition that some people will wish to have -- and indeed some parents will wish to have -- some assistance in expressing their point of view and it can come from a variety of sources. Any one of the sources that is acceptable should be recognised as expressing that person's point of view. To include in the Bill the right to a service and commit the government to providing one will be a very foolish move because it would not happen; you would not get the money and you would not get sufficient individuals. Even in areas where there is a service, you find that one advocate is acting for many different individuals. Citizen advocacy, the one to one service, is relatively rare compared with the other sort. They all call themselves independent advocates. When we look at the programmes and the sources of finance, it is difficult to accept that they are really independent. The voluntary bodies can do quite a lot. The charities can do quite a lot but trying to turn it into a national service I think will fail. It will absorb a lot of start-up money and government money in the interval before it is finally recognised.

 

Q693  Mrs Humble: Does everybody agree with Dr Brook or disagree?

Mr Cramp: I disagree. When Valuing People was published two years ago, I think about 400 people benefited. While I agree that there are some concerns, if it does not work out quite as we would like it, it does not mean to say it should be on the face of the Bill. I say that not just from the learning disability point of view but from the point of view of all disabilities. We all need some kind of advocate or some help at some point in our lives.

 

Q694  Chairman: Are you suggesting that the need for advocacy should be in the code of practice because that is much more flexible?

Dr Brook: Yes.

Mr Sugden: Either on the face of it or in the codes of practice but -- and here is a big 'but' -- we have to have the family to be consulted there because something like 60 or 70 per cent of the sort of people we are dealing with at our end are looked after by the family anyway, which is frightfully important, and therefore we may need a definition of family carer. We may need a definition of volunteer carer, paid carer and advocate. As Dr Brook says, advocates come in many shapes and sizes, including paid.

Q695  Lord Rix: Would you care to offer any figures, actual numbers?

Mr Sugden: Of, sorry?

 

Q696  Lord Rix: Of people who might require advocates? Have you any ideas to put?

Mr Sugden: I would be plucking figures out of the sky. Come on, Maurice, help me.

 

Q697  Lord Rix: Dr Brook did quote facts.

Dr Brook: That is a good question. Some of the people speaking this afternoon are probably in the category of mild to moderate handicap of which we have about one million in the country. We have about 175,000 severely profoundly handicapped. To put this into context, in my area in Surrey, we have advocacy partners who I believe may have given evidence to this Committee. From their last annual report it is possible to work out that they are giving a service perhaps to 510 people out of a handicapped population of about 40,000. The cost of that service seems to be about 780 per person, of which 80 per cent is coming now from public funds. Now they may be able to contradict these figures and have different figures but I can only take my calculation from their annual report. Your experience in Blackpool might shed some light on this because I do think we have to be hard headed about any proposals of this kind. Just to multiply that service which, as I say, is only now touching a small proportion of the people in the area, to say 100,000 people nationally, which is under ten per cent of those available, will require 78 million, of which 62 million will come from the public purse if they continue to be funded at the present rate. Now I can think of much better ways of spending 60 million in services to this group of people than that way and there are other ways of approaching it I think.

 

Q698  Laura Moffatt: Chairman, it is obvious that caring parents - as has been demonstrated around this table both by those who are asking questions and those who are answering - will fight like alley cats for their children and that does not matter if you do not like the girlfriend your son has brought home or if you are having to look after someone with profound learning disabilities and making day to day decisions for them, so that is a given. The problem that this Bill faces is that not everyone with either a learning disability or someone who suffers temporary incapacity or develops an incapacity has that sort of care. Now this Bill has to deal with that. It is incredibly important to hear from parents their view but we have to find a way for the Bill to deal with that. We have to find some middle ground where the parents feel secure in the fact that there may be different people who can assist with decision making, there may be those who can add to that process and give value to that process. Can you tell me if you feel that there is any middle ground for you or if you believe firmly that there is no value?

Dr Brook: There is value in particular situations, as I think I said earlier, but it is a limited application and what seems to be being proposed will be advocates who would operate alongside parents, for example, particularly in cases of dispute. You cannot have a situation in which you have more than one decision maker.

Q699  Laura Moffatt: You can have partnership in decision making?

Dr Brook: Yes, indeed, but at the end of the day one person is taking the responsibility and it has to be the people who have to live long term with the consequences.

 

Q700  Mrs Humble: The advocate is not the decision maker, the advocate is the voice of the person who is at the centre of the discussion. It happens now that the advocacy services engage with families where the view of the parents, may be about the future care of an adult child in a household, is at variance with the views of that adult child and so the advocacy service gets involved but as the voice of that person so that voice is heard. I have met individuals in these circumstances where they feel reluctant to argue against their parents, because they care about their parents and they do not want to upset them, but they also feel very strongly that they have a different perspective and what they want is that perspective to be heard. At the end of the day the decision will be made by the professional taking into account the views of that individual and if that voice is then handled by the advocacy services so be it but we should take into account the views of the individual and the views of the parents. Like Laura has been saying can we look at this draft legislation to make sure that the voice of the individual is heard and is heard directly wherever that is possible or indirectly through an independent voice plus the concerns of carers and professionals so all the people involved can be heard. How can we frame that in the legislation?

Mr Sugden: It has got to be codes of practice, has it not, surely? Certainly the Bill as it stands is absolutely first class, that is a personal view. Codes of practice: that is where the nitty gritty has got to be really ground out, that is the way personally I see it. We have to tackle these different things. What is more it is quite possible there is a different code of practice - this is me talking not RESCARE - for the grouping that we happen to be involved with compared with, let us say, those with Alzheimer disease or whatever it might be, who have been perfectly okay in the past.

Mrs Pearson: May I just say I think there can be a real problem of funding the voice of the person. I have had this experience myself and I know many people who have as well. My daughter is at the upper end, if you like, she does not have legal capacity but she is perfectly articulate and she is plausible and she is able to make day to day decisions and be very definite about what she wants, and obviously we encourage that but she is very suggestible, she is very vulnerable and she wants to please whoever talks to her. It depends entirely how you put the question how she will respond. If you have an advocate who has an axe to grind to the extent that they might be employed by the authority - we have been through this mill ourselves so I know - if you as the family have a dispute, not with your child but with the authority and the authority then comes in with their advocate, independent perhaps but only slightly independent, you then have a problem that there can be pressure put on that very vulnerable person. In a sense there is a conflict that is not really a conflict with the person at the centre, the conflict is between what the family believes to be the right course and the best course for their vulnerable relative and the authority who has a different agenda. Do you see what I mean?

 

Q701  Mrs Humble: Yes, I see what you mean. It goes back to a question that I asked Dr Brook earlier about if we were to proceed along the lines of suggesting that an advocacy service is very important for the successful implementation of this proposed legislation, then it is the issue of how that is defined, monitored, supervised?

Mrs Pearson: It is so subtle. This is what is difficult. It is so subtle. The people who were speaking in the first session, I am sure the majority of the people they represent there would not be a problem, they would need encouragement, support and perhaps help reading things and understanding. It is a completely different ball game from what we are talking about. Even my daughter who, as I say, if she was sitting here, she would be very well behaved, she would listen, she might even pitch in on one or two points but she would not have the foggiest idea what we were talking about and she would not understand the consequences of any decision she made. It is another way of communicating with the person and an advocate, somebody from an outside, with the best will in the world will have a job to discover what her real wishes and views are and even those change from day to day, month to month, year to year because she cannot weigh up things in the balance and she cannot understand the consequences. Only people who know her very well and consistently and observe her minutely - when I say "her" I am talking about many other people like her who I know also - only someone who has that knowledge is going to be able to pick up the signs really and help her to identify what she wants. You cannot do that if you come in and see a person half a dozen times.

 

Q702  Mrs Browning: Very quickly to pick up on that point and also to pick up a point that Joan Humble made. You said in your response then it will be the professional who will decide. Parents spend their lives battling the so-called professionals.

Dr Brook: I quite agree with you.

 

Q703  Mrs Browning: Whether they are social services who have not got the resources and try and fob you off with something totally inappropriate or whether it is psychiatrists who really do not know one condition from the next but think they do. We had an admission of that when we questioned the psychiatrists. I just have to say to the parents here I think the point you have made, and the point Mary Pearson has just made, struck home because where I am very concerned, Chairman, and we have put this question to various witnesses, is where the balance falls. I am in favour of the principle of independent advocacy but when somebody has to go that extra mile to take on and challenge the so-called professionals it is not going to be an independent advocate who is going to run with it.

Mr Cramp: That comes back to the point I was making about the appeal system. One thing I strongly believe and I understand about independent advocacy, they can be the best people and they can be the bad people but I think if you have the option and put it in the Bill, either the Bill itself or the code of practice, that person chooses who they are then I think you go some way to that. Also I think you can still challenge it through the court protection if that system is set up but again it comes down to resources and it depends who is committed to doing that.

Chairman: I think there are two large areas which we have not got time to consider properly, assessment of incapacity and best interest. If you would kindly write to us on those areas that would be helpful. We have had a useful discussion. We have spent a long time on advocacy which is so important in your circumstances and of course in the circumstances of the first group. It has been a very useful afternoon I can assure you. Thank you.