Joint Committee on the Draft Mental Incapacity Bill Minutes of Evidence

Examination of Witnesses (Questions 680-699)


21 OCTOBER 2003

  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 51, 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 14 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% 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 idea how many?

  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% 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 10 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.

previous page contents next page

House of Lords home page Parliament home page House of Commons home page search page enquiries index

© Parliamentary copyright 2003
Prepared 28 November 2003