UNCORRECTED TRANSCRIPT OF ORAL EVIDENCE To be published as HC 95 xv

HOUSE OF LORDS

House of COMMONS

MINUTES OF EVIDENCE

TAKEN BEFORE

JOINT COMMITTEE ON THE DRAFT MENTAL HEALTH BILL

 

 

DRAFT MENTAL HEALTH BILL

 

 

Wednesday 2 February 2005

MS IMELDA REDMOND, MR MARK ROBERTSON

DR GWEN WALLACE and MRS LINDA LANSDELL

 

MR RICK HENDERSON, MS KAREN MELLANBY, MS HILARY DYTER

MR JONATHAN COE, MR PETER MUNN and MS BEVERLY MILLS

Evidence heard in Public Questions 1004 - 1084

 

 

USE OF THE TRANSCRIPT

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Oral Evidence

Taken before the Joint Committee on the Draft Mental Health Bill

on Wednesday 2 February 2005

Members present:

Barker, B Carlile of Berriew, L (Chairman) Carter, L Cumberlege, B Eccles of Moulton, B Mayhew of Twysden, L McIntosh of Hudnall, B Murphy, B Pitkeathley, B Rix, L Turnberg, L

Mrs Angela Browning Mr George Howarth Tim Loughton Ms Meg Munn Dr Doug Naysmith Mr Gwyn Prosser Dr Howard Stoate

________________

Memoranda submitted by Carers UK and North Derbyshire

Forum for Mental Health Carers

 

Examination of Witnesses

 

Witnesses: Ms Imelda Redmond, Chief Executive, and Mr Mark Robertson, Public Affairs Manager, Carers UK; and Dr Gwen Wallace, Chair, and Mrs Linda Lansdell, Committee Member, North Derbyshire Forum for Mental Health Carers, examined.

Q1004 Chairman: Can I welcome you to this session of the Committee. Could you note please that this is a public evidence session and a transcript will be produced and will be available on the Internet after about one week and you will be free to make alterations of a textual nature, but not in substance. Perhaps you would like to introduce yourselves and then, if you will permit us, we will move straight into questions.

Mrs Lansdell: My Lord Chairman, I am Linda Lansdell. I have two close members of my family who have suffered from a mental illness. One has suffered from schizophrenia for 23 years. I am a carer and a member of the North Derbyshire Forum for Mental Health Carers. It meets monthly and we have over 90 members. For many years I have also been a member of Making Space, a registered charity in the north of England, which helps people with a wide range of mental health problems, especially schizophrenia, and I have attended many conferences and groups.

Dr Wallace: I am Gwen Wallace and I chair the North Derbyshire Forum for Mental Health Carers. There are two forums in Derbyshire, one North and one South, and we work in partnership with the Trust on their statutory committees.

Ms Redmond: Imelda Redmond. I am the Chief Executive of Carers UK which is a membership organisation of carers and it campaigns and lobbies for carers' rights.

Mr Robertson: I am Mark Robertson, also of Carers UK, and I am the Public Affairs Manager.

Q1005 Chairman: Could I start by asking if you are satisfied that the definition of "carer" in the draft Bill is sufficiently clear and workable? Also we note that Carers UK has welcomed that carers have to be notified if the relevant conditions have not been met and if the patient is about to be discharged. What circumstances do you envisage in which that information might be withheld from a carer?

Ms Redmond: The definition in this draft Bill is much clearer and much more workable and relates back to previous legislation. Our only comment is that in the explanatory notes, paragraph 56, it still refers to "paid care workers" in the context of carers and from our point of view it is really important that those two categories of people are separated out in all explanatory notes, in codes of practice and in all guidance because that is part of the confusion that comes from professionals when they do not quite understand the role of carers.

Dr Wallace: We would agree with that. In terms of the second part of the question, when should information be withheld, we do know that there are times when service users and carers are at loggerheads because of the illness, so it is very difficult to ask a service user then whether you should ask a carer if they can be told what is happening. We would like, therefore, to have something as we have got in the Incapacity Bill where carers and service users can, and I think we are actually doing this in Derbyshire, in their care plans nominate the person they would want to be told when they were ill so that that is sorted during a period when they are not in a crisis.

Q1006 Chairman: So that they then change their minds because of their illness?

Dr Wallace: That is right.

Q1007 Chairman: And how does one determine whether they have changed their minds because of their illness or because they just do not want that carer to be told?

Dr Wallace: I think that is very difficult. I think you would have to have something fairly clear in the care plan and most of the things that professionals have to do when someone is mentally ill require quite a fine judgment. Obviously there might be a fine judgment required at that point, but we would think that if the service user has said in a time when they were feeling all right, if you like, on their care plan that should they fall ill, they would nominate this person in terms of the nominated person, that person should be seen, provided that the care plan is kept up to date, every six months or something. It is unlikely that something serious will have changed in that relationship that has not been provoked by the illness.

Q1008 Chairman: I think that the provision of support from a carer, a nominated person, an advocate and a lawyer runs the risk of overwhelming the patient and causing a muddle of advice.

Ms Redmond: I think that part of it is about clarity of the roles. It makes perfect sense for somebody who is very willing to do a lot of the care for perhaps a son with a mental health problem to have them live with them and to help them with their daily living, but not wish to be the nominated person. They might want another member of the family to do that. I think the thing for professionals is to see that there is a team that includes both the service user, the carer, the nominated person and advocate. I do not think it has to be confusing; it is about calling on different expertise.

Q1009 Chairman: Do you think there is anything more the Bill could do to remove the stigma, if that is the right word, on carers, particularly unpaid carers, people like you, Mrs Lansdell, who have cared out of love and affection and not as a profession for 20-odd years, or is there more the Bill could do to recognise more the role played by carers, particularly family carers?

Mrs Lansdell: I do think that they are usually forgotten. I do not how to remove the stigma. There is stigma with mental illness all the way through, is there not?

Q1010 Mr Prosser: Yesterday I was talking to a group of carers and care support people in Dover and east Kent and one of the points they raised quite strongly was that they did not feel that their role was recognised sufficiently in this Bill.

Dr Wallace: That is true.

Q1011 Mr Prosser: They felt very strongly about that. In fact we had the Minister down to listen to them directly. Also specific to this section we are considering today, there was also a feeling that the carer who was also the close relation was the person who almost became "the enemy" of the patient or the user when that user went into crisis. This means, because of some of the measures in this new Bill, that they might then be excluded even at that stage. Is there any way that the Bill can be modified to protect that circumstance?

Dr Wallace: Only by advance directive, I think. The other problem is that service users are also very, very frightened of anonymous people who come from outside. I care for someone who refuses to go to a tribunal even when there is a statutory one and insists that I do it instead, so as for the idea, and we have had this from other carers, that somehow you can bring in advocates or even crisis teams, we are having problems with crisis teams at the moment because they are covering a wide area, they do not know the situation and they are not known to the service user, so as well as all those problems with the carers, there are problems with everybody else as well. We cannot just say that because they are hating the carer, they will leap into the arms of the advocate. It is a problem.

Q1012 Baroness Pitkeathley: I declare an interest, Lord Chairman, as the former Chief Executive of Carers UK, but I would like to ask the current Chief Executive of Carers UK about what was in their evidence about meaningful consultation with the carer. How do you define "meaningful consultation" and how can this Bill make sure that the carers get meaningful consultation?

Ms Redmond: The current Bill, as it is drafted, leaves the situation about consulting carers in the hands of the service user. What we know is that when a service user is well, they might have a different opinion about their close relatives than when they are ill, so there are a number of ways I think we could have meaningful consultation with carers. One is that if there is a carer involved, then you have to see them as partners in the delivery of that care. They are not an add-on, but they are absolutely part of the team. They have also to be seen as a person in their own right because even if the service user has said that they do not want the carer consulted, if actually then at point of discharge you are expecting the person to stop working to look after their son or daughter who has been discharged back into the house, then actually you have to see the balance of their own rights and their human rights as separate from the service user. In the Bill currently as it stands, if a service user says they do not want consultation with the carer, then that is it and that, to me, actually would seem that it denies the carer's human rights. If the service user is very clear that they do not want their details and their treatment plan to be consulted on, there is also the issue about the impact it has on the carer, so just consult on that, but make sure that you do, so, for example, at the point of discharge, what sort of intervention would come into the house at a later stage, those sorts of things. I think the main thing is that if the professionals do not understand the role that family members play in the support of service users, then they are actually missing a big part of the jigsaw and they have to second-guess what somebody was like in leading up to their particular episode of ill-health.

Q1013 Baroness Pitkeathley: You talk about the human rights of the carer, but some would say that giving information to the carer against the wishes of the user would be a denial of the user's rights, so how do we wrestle with that?

Ms Redmond: I think there are two things. I think advance statements are absolutely key to quality mental health services and when the person is not so ill, better discussions can take place that involve the carer. If the person is adamant that they do not want the carer involved, then what you do is separate out the issues that specifically will impact on that carer and consult with the carer on those issues. It is absolutely reasonable for somebody to say, "I cannot be there when this person is discharged next Thursday because I work full-time". A carer I was talking to just last week went for a planning meeting at the hospital and the hospital said, "You can take your husband home now. He could do with a day at home". She said, "No, I'm going back to work", and they said, "But you are here now". She said, "But I've only got half a day off work", and they said, "Well, you can take him home". She phoned in work and said, "Can I have the day off?", and she got carer's leave. Then they rang her and said, "Would you mind now keeping him?", and she said, "I'm afraid I can't. I really have to go to work, but he can come back in a taxi", to which they said, "No, he can't go out unescorted". That was the first point she had been told that. In that situation, he was not saying, "Don't tell my wife anything". Had he have been, she still has an absolute right to her own consultation about, "Are you prepared at this point to give up some work or to stop working and to remain in the house in order to support this person?" Now, that is not about the confidential issues of the service user, but it is actually about their own separate human rights.

Q1014 Baroness Pitkeathley: Can I just ask one more question about the issue of the trust. The caring relationship depends on its history and the trust between the two people involved in it. I think what we are struggling with is: how do we maintain that trust when we all know that care is predicated on the unpaid care of users while recognising the rights of both parties in it? Perhaps the carers could answer that.

Dr Wallace: I agree with everything that Imelda has said. I think it is very, very difficult at times when the service user is in a crisis to maintain the trust relationship and there may be times when separation is required, which is why I find compulsory treatment orders in the community very difficult because that may be precisely the time when the service user needs to go into hospital and then you have got a separation. Hopefully at the point of discharge, relationships will have been repaired because over that time while they have been in hospital, they have had a chance to recover. I think if they are discharged and that trust relationship has not been restored, then you really are in trouble because you are asking the service user to go back into the home with a carer they are mistrusting. I think the only answer there is longer hospital stays or halfway houses. We have discussed the possibility of halfway houses because often these people do not need a lengthy stay in hospital. They are deskilled in hospital, they are bored in hospital, but if there were some kind of respite residential places where they could go for short periods to convalesce before they are ready to go back into the community, that would solve a lot of problems.

Q1015 Lord Mayhew of Twysden: I have a point about the stigma attached to those who care for mentally ill people. I was horrified to read in the carers' evidence at paragraph 4.6 that there is so much stigma attached to people who care for a person with a mental illness as being part of the problem and not the solution. Now, is this a sort of professional amour propre because I would have thought everybody connected with this system realised that it would be in the soup if it were not for the thousands and thousands of carers who take so much of the load?

Mrs Lansdell: One is used to the blame for the illness years ago. They used to think that they caused it and because there was a crisis and a person was ill and someone would go in, they would think the family was in turmoil, but it was not normally like that; it was because the person was ill. This stigma was partly to do with the fact that the parents and carers were blamed for causing the illness, I think.

Q1016 Lord Mayhew of Twysden: And that persists today?

Mrs Lansdell: I think it does in some quarters.

Q1017 Lord Mayhew of Twysden: Can the Bill help or not?

Mrs Lansdell: I do not think so.

Dr Wallace: My guess is that it will make things worse, but there you are. We have a number of examples of this and I will give you just two. One is that we have a self-help group for carers which is not directly connected to our particular forum where north Derbyshire is quite rural and people will not meet in a carer's group in their own village. They will meet in another village where they are not known, but not in their own village. That is one example. Another example is that we have a new independent hospital in the area and we are having quite a lot of trouble with a GP surgery, and I do not want to slander anyone at this point, but where they ----

Q1018 Chairman: It is all right, you get parliamentary privilege here!

Dr Wallace: ---- where they do not particularly want the residents on their books. I could say what has been said, but that is a problem.

Q1019 Chairman: I should declare an interest here as someone who has had a severely mentally ill teenage daughter at one time. Do you think there is any family that does not feel a sense of guilt when a member of that family becomes mentally ill and is that not part of the problem with the stigma?

Mrs Lansdell: I think it helps if you get educated and you know that the people are wrong and you just ignore it.

Chairman: You find that there are a lot of other people in the same boat, do you not?

Q1020 Baroness McIntosh of Hudnall: I wanted to pull out a little point, well, it is quite a big point, but it is buried in the Carers UK evidence, about the case history that you give us at 5.5 where you say that the carer who was not allowed to have the details of the care plan was told that it was illegal for her - I think it was her - not to take her adult son back into her home. Now, there are two points I wanted to raise. First of all, I would guess that that statement, if made, would be in fact untrue and, therefore, arising from that, is it common for carers to be, as it were, put under that kind of pressure when they are faced with a difficult situation of that kind that this carer clearly was facing?

Ms Redmond: Our experience is that it is fairly common, that the pressure on beds within hospitals is so great and that the urge to move people back home is so great that there is pressure put on families to deal with situations that they find impossible to cope with. Another one of our members was telling me about the fact that with two young children, her husband having a mental health problem and a marriage which is breaking down, she did not feel she could cope with it all, and the pressure on his hospital discharge was that he would come home because it was his home even though she felt that she could not cope with everything that was going on. I am afraid it is fairly common.

Q1021 Baroness McIntosh of Hudnall: Given that there is a difference between pressure and outright untruths, I think it would be fair to say, is there anything that you could recommend to us which it might be appropriate to put, say, into codes of practice or elsewhere which would help mental health professionals perhaps to understand that some kinds of pressure are not appropriate?

Ms Redmond: This is why I said right at the beginning that the definition of "carer" really matters. Getting that confused with care workers confuses professionals about what responsibility some people should take. Both within the legislation, but also within good practice guidance, talking about proper, thorough consultation with families, seeing them as partners in the delivery of care I think would make a big difference rather than not seeing them at all, but suddenly expecting them to implement the care.

Q1022 Dr Naysmith: Dr Wallace said that she thought that the Bill might make things worse for carers in terms of stigma for carers. What aspects would make it worse?

Dr Wallace: Well, I suppose my worry about the Bill is the way it is tied so closely with the criminal justice system, particularly with compulsory treatment orders where carers may find themselves under some obligation to work with a team, to make sure that somebody does not leave the house or takes their medication or does not go out to the pub or whatever kind of restrictions are imposed. The carer is going to feel (a) that they have to help maintain those orders, and (b) maybe they have to inform on the person they are caring for, so I just feel it is going to put carers into a very, very difficult position. I do think there is a big, rather heavy tie-up here with the criminal justice system, reminiscent of ASBOs and things like that which is entirely inappropriate.

Q1023 Mrs Browning: I understand why you make that point, but following on from that, if there are genuinely more resources to support the carer in that situation, do you think then that a community treatment order would be more acceptable to carers or is it purely the legal responsibility they would be taking on?

Mrs Lansdell: Compulsion in the home is disruptive and it can interfere with people's lives, especially those with younger children and elderly people, and it is very tiring. People just think that if they are put in with a crisis team, the families can manage and they do not give it much thought, but that is a downside of teams because they just come for half an hour, but you are caring for that person for 24 hours, and what if someone wants to wander off? I do not think it is workable, compulsory treatment at home, only in a very few cases. I think it would be very difficult for the families and carers and for the service user and I think it might increase the stigma against the whole family.

Q1024 Ms Munn: I want to move on to the issue around blocking compulsory treatment. Obviously the draft Bill, as you are aware, removes the right of the nearest relative to block compulsory treatment or initiate the release of certain patients. Now, obviously we do not know whether the carer will be the nominated person and I know this is a complex issue, but perhaps firstly we could deal with the issue of the nominated person. Would it be your wish to see the nominated person have that right to challenge compulsory treatment?

Mrs Lansdell: Well, the many carers we have discussed it with say that they do not want to lose the safeguards we have at present under the 1983 Act for the following reasons: they know that it is a very serious step to take which can have a long and lasting effect upon the person's life; it will cover a wider group of people because of the term "mental distress"; and it takes all the power away from both the patient and carer which could have detrimental effects on both people. It also should not be forgotten that carers have to care for someone 24 hours a day, so they should be consulted from the start.

Q1025 Ms Munn: Can I ask Carers UK for your views?

Ms Redmond: Our view on it is that assuming that the safeguards are there, that it is going to be an appropriate person and they are there, the nominated person should have the right to challenge compulsory treatment. If the nominated person is not the carer, the carer should also be properly consulted and seen as part of that team.

Q1026 Chairman: Is it a right that has been used effectively by carers in the past? I think we have seen a number of examples where it has certainly been used.

Mrs Lansdell: I have got a good example of compulsion destroying the career of a young lady. She successfully completed two years at university, studying architecture, when she became ill and was eventually diagnosed with bipolar effective disorder. When she refused to take medication due to the awful side-effects she was experiencing, she was threatened with section 3 of the 1983 Mental Health Act. Her parents were helped and given useful advice by a social worker who advised that if this went on, she would not be allowed to teach, work for the Civil Service or travel to certain countries and it would have other serious future effects. This was carefully explained to her along with the need for her to take the medication. She co-operated and is now a useful member of society, earning a living teaching, and has not since had another relapse. She would have been devastated if she had been physically forced to take the medication which was proposed, but the point of that is that under the new Bill, the access to a social worker or another person is denied for 28 days. The parents stepped in and would not agree to sign section 3 of the Act. Do you see what I mean? It can affect people very deeply and this person has not got much confidence because of all this. She realises that this could happen and she would not divulge that she felt like she did probably and go for help to professionals.

Q1027 Ms Munn: I certainly understand exactly the point you are making about the serious consequence of it. Is it your view that most nominated persons will be the carer? Do you think that is what is likely to happen?

Dr Wallace: My guess is they will.

Ms Redmond: I just do not know. I can think of plenty of families where the carer will be perhaps the elderly parent and they might well nominate a sibling to do the negotiating through the hospital system. I can think of a very good example of somebody who is living with their parents, but it might well be their partner who becomes the nominated person, but it might well be different.

Q1028 Ms Munn: We have a complicated situation where the nearest relative, the nominated person, the carer, could all be three different people. Given that, what would you like to see? Do you think the current position in terms of being able to block compulsory treatment is the right situation or would you like to see that updated given that the nominated person, carer and nearest relative could all be different people?

Mr Robertson: I think that is going back to why we think the definition of "carer" is so crucial to the Bill. If it is properly framed, we are identifying individuals who have quite a serious investment in that and to deny them any access to challenge because someone has chosen another nominated person is a difficult conflict which the Bill is not going to be able to address entirely, but you are leaving yourselves with an issue where you are identifying someone who has such an investment in this care plan, yet has no right of access to challenge the outcome.

Dr Wallace: The current situation of the nearest relative is open to negotiation and it in a sense solves the problem because it does not even have to be a relative so long as it is the nominated person.

Q1029 Ms Munn: So in a sense it is a nominated nearest relative?

Dr Wallace: Absolutely.

Q1030 Baroness Eccles of Moulton: I was just wanting to pursue the point that the definition of "carer" has to be very clearly set out and I was just wondering, in all of your experiences, how often it is that there is somebody who is recurrently mentally ill and is cared for at home and where it is not actually possible to identify a carer who would fulfil the requirements that are obviously most desirable, and what happens then?

Dr Wallace: This is a very, very difficult area because carers have not been identified in the past and to some extent the work we are doing with the forums in Derbyshire is an attempt to identify carers. We do know service users clearly, but if a service user is asked, "Do you have a carer?", they will usually say no. If they are asked, "Does somebody do your washing?", they say, "Yes, my mum", so it is a difficult area.

Ms Redmond: There will be plenty of people without carers. Not all people with severe mental health problems will have carers. What we are talking about is those that do. The ones who do not will be living independently or in supported housing and they might or might not have contact with their family still, but the ones that we are representing are the ones who do live, or have very close relationships, with their families.

Chairman: I think this may give us a natural connection with the question that Lady Cumberlege is going to raise.

Q1031 Baroness Cumberlege: I would like to move on now to the question of aftercare. In the evidence that was given by the North Derbyshire Forum, you are saying there that the Government has not replicated in this draft Bill section 117 of the Mental Health Act of 1983, the current one, and that provides free aftercare as long as a person needs it. It has been put to us, this Committee, that ending that provision of section 117 will bring people who come out of hospital after a mental illness in line with those leaving hospital after a physical illness, so this goes back to your situation perhaps concerning stigma. People coming home after, say, a hip replacement do not have an automatic entitlement to free aftercare, so how do you respond to this argument where you are asking for something different for people who have a mental illness than for those who have a physical illness?

Dr Wallace: We are talking here about something that is little understood, that is chronic, that is not amenable to treatment, although symptoms may be reduced by medication, and total cures may be apparent for many years, but then you can get a recurrence, so we are actually talking about something which is very, very different from a hip replacement or a physical illness where somebody is better. We are talking about a chronic illness. Admittedly, some physical illnesses are chronic and presumably they have rather different aftercare systems from a hip replacement, but we are representing a whole range of illnesses. We have talked a bit about schizophrenia and bipolar here, but we also have carers caring for people with Alzheimer's where there is a steady decline where they will have someone home for a short while and then back in hospital, and they need permanent care. They need permanent care at home and the carer needs permanent help with the person they are caring for and they are often elderly spouses or partners, so the idea that you can walk off after six weeks is just appalling. We think that has to be a clinical decision made in consultation with the carers.

Mrs Lansdell: I do not know why it was made at all. Whether it was to save money, I do not know.

Q1032 Baroness Cumberlege: So you would clearly like that to be reinstated in the draft Bill?

Mrs Lansdell: They have got to be looked after, the people who are severely ill. They cannot manage without some help.

Chairman: I think it might be helpful, because of the viewpoint you present, if we were to spend the next quarter of an hour or so talking about community treatment orders.

Q1033 Dr Stoate: This is something which particularly concerns me because I am actually still doing some practice and, as a general practitioner, of course I come into contact with a large number of users of mental health services and people with chronic mental health problems, so I understand very much what you are saying about the problems. You have already touched earlier on your concerns about community treatment orders and I recognise those concerns. In your evidence, you cite the case of James who has been detained in hospital for more than six months under the Mental Health Act simply to ensure he takes his medication and until he is stable enough to cope again. Is that not an example of somebody where hospital compulsory treatment surely seems over the top?

Dr Wallace: Well, hospitals are not very suitable. We are not that keen on hospitals, I have to say, and we would much rather have halfway houses where people can go for, if you like, asylum, in the real sense of the word, and also retain some skills and some autonomy. We are not entirely happy with the hospital situation in that sense, but we are equally unhappy with community treatment orders partly because of the burden that places on the carer, and I could come back to that later, but mainly because there is a kind of underlying belief in this Bill that somehow you can identify who might not take their medication. Now, in this particular case with James, his parents were alerting the community mental health team for about six weeks before he was finally sectioned. They were visiting and they were asking him if he was taking his medication and he was assuring them that he was, but the parents were convinced he was not. Now, there was no way of checking because, and I do not know if you have a system, our GPs do not have a trigger to tell them when somebody is not reordering their medication.

Q1034 Dr Stoate: We do actually. Most modern GP systems actually have an order trail on prescriptions and it is actually quite easy to detect whether someone is not collecting their prescription. It is not the same thing as checking that they are taking their prescription, but at least you can tell if they are collecting them.

Dr Wallace: We do not have it in Derbyshire. We have been told that although they can tell if someone is overdosing and has ordered too much, they cannot tell if they have not reordered their prescription, so we are trying to get a system in place whereby the community team can be alerted if the prescription has not been ordered and picked up because people with mental illness have a lot of problems, realising that they have got to order some more tablets three days before they run out.

Q1035 Dr Stoate: I understand your concerns, the difficulties and the practical problems, but you cannot have it both ways. We have heard earlier today that you are very concerned about the pressure on beds and yet we have got here a chap who is taking up a bed for six months. Now, I understand fully that there will be problems, but would it not be better to have a system where, if possible, if someone is on a mental health section and it was felt that they could manage in the community because for all the right reasons they were able to comply, they had the back-up, they had the support, everything was working, that surely should be an option? Now, if it breaks down and three or four weeks later the carer cannot cope, the person is not taking their medication, there are problems in the community, they can always be taken back into hospital again, but currently we do not have the option to say to somebody, "Thou shalt take your medication in the community or have hospital treatment". What I am saying is: why can we not have a situation where, if someone is on a section, if they will take their medication in the community, great, leave them in the community, but if they cannot or will not or the situation does not work, take them into hospital. There needs to be that flexibility. Surely that must be available as an option.

Dr Wallace: The first thing in this case was that he was too ill by the time ----

Q1036 Dr Stoate: I am not talking about an individual case.

Dr Wallace: Okay, I can understand the general principle. Here we have section 17 at the moment, so if somebody is sectioned and allowed out, they could be allowed out on leave with this proviso that they took their medication, so we already have that option without a compulsory treatment order. The very tone of compulsory treatment orders and the scope that they can cover is very alarming to us. The idea that somebody can be forced to take medication in the community is reminiscent of, you know, Depo injections in the kitchen kind of stuff.

Q1037 Chairman: Can we try and look at it from James' viewpoint now because that might be useful. James is in a hospital and he has been in the hospital for two months and he is, to use a word which I think you used earlier, bored and he is becoming deskilled. He is offered the option of going home on a section subject to compulsory treatment and during that time he can either get himself reskilled or possibly go back part-time or full-time to his proper job and so on and spend time with his family. What is James' attitude to that going to be, in your view, and what if James' attitude is, "Yes, of course I would rather go home and even if I am forced by the state to take my medicine, that is my option, that is my wish"?

Dr Wallace: There are two possibilities. One is that that could already happen under section 17 and he could be allowed out on leave to do that, but in this case he was not well enough. He was spending all his money, not budgeting, going home for meals and all this kind of thing when he was allowed on leave, so they actually cancelled the leave. They did try this option under section 17, to let him out on leave, but it did not work. I do not understand quite why you need compulsory treatment orders when you can use section 17.

Q1038 Lord Turnberg: As I understand it, your anxieties are related to the fact that carers would be put in an impossible position. Is that it, that you would feel like you were the jailer and have responsibilities for ensuring the patient did what they were supposed to do and that this is too much responsibility? Is that the nub of your case?

Dr Wallace: It is if the person is not well enough. If they have been sectioned and given compulsory treatment initially presumably in hospital, they can then be let out on section 17 leave for a few days and go back and so on and so forth, which happened in this case, but the leave was ultimately cancelled because when this person was going out on leave, he was getting drunk, spending all his money and causing trouble at home because he was going home for meals and this kind of thing. The carer's responsibility is very important in this and his parents were actually begging the hospital to keep him in. Now, I understand the boredom and I understand this issue that they might be able to carry on with their lives in the community, but if they are ill enough to be under a compulsory treatment order, then I would say they are ill enough to be in hospital.

Mrs Lansdell: They need to feel safe and secure. I asked my son actually now he is well whether he hates going into hospital and he said, "Well, it's the illness. I don't like being ill. I don't mind where or being in hospital". As people get old, it is very difficult and this Act would make life very difficult for a lot of carers who are quite elderly.

Q1039 Chairman: This is all based on the assumption of course that everybody who is made the subject of a community treatment order has been an inpatient at all. Are you effectively saying that somebody should have been ill enough to have needed hospital admission before they should be subject to any compulsory powers?

Mrs Lansdell: I thought they had to have been in hospital before they could have this.

Q1040 Lord Turnberg: The question really is: are there any circumstances in which this provision would be helpful?

Dr Wallace: It is helpful in the sense, and I have experience of this, of being able, as under section 25 at the moment, to make somebody live in a particular place, and they can be brought back if they disappear, so I think that can work, particularly if the place they are told to live in is, say, a residential home or a supported flat or something like that. That exists at the moment under section 25 where you can specify where somebody lives in the community and you can get them back.

Q1041 Lord Mayhew of Twysden: I am impressed, I am sure we all are, by what you said about the burden that would rest upon the carer, but would that not apply in the case of leave which you say is the alternative?

Dr Wallace: Yes.

Q1042 Lord Mayhew of Twysden: As I have understood you, you have been saying that you do not need the community treatment order because they can be released on leave.

Dr Wallace: Yes.

Q1043 Lord Mayhew of Twysden: But a carer under that option will, nonetheless, have the same.

Dr Wallace: Yes, but they can be recalled from leave. They are let out on leave for, say, a weekend initially and then a week, maybe two weeks, maybe three weeks to see how they go and then they can be taken back into hospital or they go back to see the psychiatrist. They have to go back or they would be fetched back anyway, so what I am saying is that that works better than the idea of a compulsory treatment order.

Q1044 Lord Mayhew of Twysden: But would I be right in thinking that the question of how they go will be put first to the carer?

Dr Wallace: No. Leave is often granted without the carers even knowing. We have had people turn up on the doorstep and told that they had to say to their carers, "They've let me out on leave".

Q1045 Lord Mayhew of Twysden: I am sorry; I did not make myself clear. Imagine somebody is out on leave. Naturally, the clinicians will want to know how they are going.

Dr Wallace: Yes.

Q1046 Lord Mayhew of Twysden: It is an obvious question to ask, I should have thought, of the carer.

Dr Wallace: That is right.

Q1047 Lord Mayhew of Twysden: So under either system you have got that factor?

Dr Wallace: Yes. We are not against that, as such. It is the idea that you could impose a compulsory treatment order which almost gives carte blanche to a possible anonymous team or a team that seems to have fewer safeguards, given that the psychiatrist does not have to be involved, and we are a bit alarmed sometimes about the way the current crisis teams are working, so we are a bit concerned about how those compulsory treatment orders might be used and we do think they could cause a lot of problems. We can do what we need to do at the moment.

Q1048 Chairman: Ms Redmond, do you want to add anything?

Ms Redmond: I have to say that I think this is a terribly complicated area and there is not a simple answer. I have spoken to a number of different people about their opinions, a number of different carers about what they would like, and I think the most important thing that people say consistently is that, where possible, advance statements on this sort of issue will make all the difference because then if somebody has said, "If I get to this state, then I want you to make me do this because I will not be making sound judgments", then that feels very different. I have to say there have been some people who have said to me that at least if there was compulsory treatment, they would have the right to say, "Help!" I think that does come from quite an emotional position where people are watching their, particularly, sons or daughters deteriorate, not knowing how to step in, so although the idea of compulsion repels everybody, the idea of having an absolute backbone that helps and intervenes to save people's lives is the other balance and getting that balance is critical. The word "compulsion" I think really frightens people, but the intention of keeping people safe I think would be supported.

Baroness Eccles of Moulton: I just wanted to pursue a point of clarification. Some time ago Dr Wallace was likening compulsory treatment orders to Depo injections in the kitchen by force, just to stress it at its strongest. Is it not the case, Chairman, that compulsion would be used in order for the person to be readmitted, but the actual administering of medication would not take place in the home and the patient would have to be back in hospital? I just think it is quite important to understand the difference between compulsion and force, that the medication would not be applied by force in the home, but the patient would be compelled to return to hospital. Is that a correct definition?

Dr Naysmith: Or a clinic in the community, not necessarily a psychiatric hospital.

Chairman: We have had some evidence about the potential for clinics in the community to be the place where medication was given and clear opposition, I think, to it being done in the home.

Q1049 Baroness Eccles of Moulton: I think we perhaps need to have it clear that the medication would not be administered in the home.

Dr Wallace: You are either talking about Depo injections, but you are also talking about the service user having to go to the clinic when they are in a pretty bad state themselves, or the alternative to that is to send a couple of police to go and take this person to the clinic to have the medication and maybe twice a day if they are on tablets, night and morning. There is plenty of medication that works well that is not available in Depo injections and it would be unfortunate if people had to shift to Depo injections simply because they were now under a compulsory treatment order.

Dr Naysmith: Just to clarify this, you said if they were in a terrible state, but it is not envisaged that everyone who would have to go to the clinic to receive their regular treatment would be in a terrible state when they did that. This is really important.

Chairman: I think it is a very good question, but I think we have a fairly broad picture of evidence on this now.

Q1050 Tim Loughton: You mentioned halfway houses as your preferred alternative to community treatment orders. Can you elaborate why and what form they would actually take, and let's work within the system as it is at the moment where there are not enough people to be looking after people who are in some form of community care. My experience has been that if you put seven people with mental health problems together in independent living in flats, if they are not properly looked after, it can be pretty chaotic. How do you envisage that working and why do you think that is a better option? Is it because you are placing a step between the carer at home and the person being cared for one step removed or what? What is really the attraction of it?

Mrs Lansdell: I did not mean that kind of house anyway. They keep talking in our area of having smaller places nearer to where people live rather than going to the big general hospital where there would be staff to support people who are not quite as ill and do not need to be in hospital.

Q1051 Tim Loughton: So what is the difference between a big hospital and this?

Mrs Lansdell: I am not sure what the proper name is for these places, but it has been talked about for a long time. Instead of the crisis team just coming out for half an hour to see someone each day, they could be based maybe there, so they do have 24-hour crisis help.

Q1052 Chairman: Dr Wallace used the term "asylum" I think in its proper sense earlier. Is this a reflection of what you said, Dr Wallace?

Dr Wallace: Yes, we have talked about this. We have had examples and it is a pity I cannot recall them offhand because I had not thought of this one, but I think Denmark, and I may have got the wrong country, has this kind of facility where people can be looked after 24 hours a day. They have some autonomy and it is more like sheltered housing than a hospital where they perhaps have a bedsit and a small kitchen, that sort of thing, but there is somebody there, staff there, 24 hours a day while they are in crisis and until they are ready to go back to their own flats and look after themselves.

Q1053 Chairman: Lord Rix, who has a way with words, as you know, has just muttered "respite care" as a sort of description of this.

Dr Wallace: Yes, but respite care covers a huge range of things.

Q1054 Baroness Barker: All of the discussion we have had this morning pertains to situations where people have been receiving treatment. I would like to ask you, perhaps not now and you might like to write to us about it, about situations in which a carer knows that somebody is ill, but the person who is ill either refuses to present for treatment or goes to a number of different places in order to cover up the extent of their illness. Do you think that anything in this Bill would enable carers to assist people who are ill to get access to treatment in the first place or not?

Ms Redmond: My first thought on that, and I do not know whether it is in the Bill or in guidance, but you cannot force somebody to go and get treatment and that is right, but to be able to raise concerns with the right professionals in the right way at the right time and be heard, that is a culture shift. You can put it in legislation, but if people, and I do not know whether it is a very recent example, but if people are going to the GP and saying, "My husband is actually terribly depressed", and then the GP just saying, "I can't have this conversation", but actually to have a different conversation with that person saying, "Well, have you tried this and have you tried that and have you talked to them in this way and have you suggested this?" would be more helpful, but that is about culture and approach rather than legislation.

Chairman: I suppose part of the answer to Lady Barker's question would be that this Bill is about compulsion and the fear of compulsion is a disincentive in terms of this Bill. There may be other machinery.

Q1055 Dr Stoate: I think you have been extremely clear with your evidence, but I have a very final point. Are there any circumstances at all where you can see the use of community treatment orders being of any benefit?

Mrs Lansdell: For a very small number of people maybe, but I think it needs stronger guidelines and they are not stringent enough, the way they are used.

Dr Wallace: You would have to put boundaries around what they meant and under what circumstances they would apply. As I said, possibly saying someone has to stay in a particular place and live there might be appropriate, but even that could be inappropriate because we have had cases where people who are very ill go home to their mums rather than live in their flats, so if they have got a compulsory treatment order that says they have got to stay in their flat, that could actually make things worse, particularly if the carer has not been consulted, so we find that area very, very difficult because it is too open, the definitions are too wide, the possibilities are too massive, and it would have to be very carefully given boundaries in some kind of code of practice which of course we do not have, and a set of principles which of course we do not have.

Mrs Lansdell: Can I just say that there is such a big shortage of psychiatrists that we do not know how the draft Bill will be worked because I believe that not many people are training for the profession, as you know.

Chairman: Can I thank you on behalf of the Committee for coming today. I can assure you that your evidence will be highly valued, as have your written representations been valued. Many thanks. Derbyshire is very lucky to have a group like yourselves, if I may say so!

Memoranda submitted by Action for Advocacy,

Association of Mental Health Advocates, Cymar and UKAN

 

Examination of Witnesses

 

Witnesses: Mr Rick Henderson, Director, and Ms Karen Mellanby, Policy and Communications Manager, Action for Advocacy; Ms Hilary Dyter, Manager, Leeds Mental Health Advocacy Group, and member, Association for Mental Health Advocates Steering Committee; Mr Jonathan Coe, Chair, Association for Mental Health Advocates Steering Committee, Chief Executive, Prevention of Professional Abuse Network (POPAN), and Chair, Mental Health Alliance Advocacy Special Interests Group; Mr Peter Munn, Secretary, Cymar, and Chair, United Kingdom Advocacy Network, and Ms Beverly Mills, Member, Management Committee, United Kingdom Advocacy Network, examined.

Q1056 Chairman: Good morning and welcome to our witnesses from Action for Advocacy, the Association for Mental Health Advocates, the United Kingdom Advocacy Network and Cymar. I am going to ask you if you would introduce yourselves fairly rapidly so that we can go into a somewhat time-limited question session in an attempt to get through most of the issues.

Mr Henderson: I am Rick Henderson and I am the Director of Action for Advocacy which is a resource and support agency for advocacy groups primarily in England.

Ms Mellanby: My name is Karen Mellanby and I am the Policy and Communications Manager at Action for Advocacy.

Ms Dyter: I am Hilary Dyter and I am on the Steering Committee for the Association for Mental Health Advocates and I am also a manager of the Leeds Mental Health Advocacy Group.

Mr Coe: I am Jonathan Coe and I am the Chair of the Association of Mental Health Advocates and the Chief Executive of POPAN, which is the Prevention of Professional Abuse Network, appearing before you for the second time.

Mr Munn: I am Peter Munn and I am diagnosed with a bipolar disorder. I am Chair of the United Kingdom Advocacy Network and the Secretary of Cymar.

Ms Mills: I am Bev Mills. I am a member of the Board of Trustees for UKAN. I am also a Deputy Director for Easier Empowerment for Mental Health Matters, a Board adviser to the Sainsbury Centre for Mental Health and former co-Chair of the European Network of Users, Ex-Users and Psychiatry.

Chairman: Can I just remind you that this is a public evidence session. There will be a transcript produced and it will be available on the Internet after about a week. You are free to examine it and make any textual corrections, but not corrections of substance.

Q1057 Lord Carter: Which skills and attributes do you consider essential to fulfilling the role of an independent mental health advocate? Is it really necessary to provide a job specification for specialist advocates on the face of the Bill?

Mr Coe: In answer to the second part of that question, no we do not think there is a need for a full job description to be on the face of the Bill. We are not aware of any precedent for that. It is extremely important that there is a set of clear functions for the Mental Health Act advocate on the face of the Bill. In terms of the skills and attributes, a piece of work was carried out over the last 18 months in London looking at the court competencies for advocacy workers. I would like to take that as the basis for my response. Top of the list was the need for clarity on professional boundaries as an advocacy worker. The ability to identify and defend the rights of people detained under the Mental Health Act is clearly significant. The ability to promote self-advocacy as the main purpose of advocacy is of fundamental importance across the board and the delivery of mental health advocacy services. The individual qualities of the worker must be focused on the ability to promote the voice of the service user and not the voice of the advocate. This is a cross-cutting issue in advocacy. It is absolutely about supporting people to get their voices heard in the way that they wish to be heard by mental health services. It is not about having another professional voice in the mix of professional voices. Listening skills and the ability to support people are vitally important. The ability for workers to review and reflect on their own practice is a prerequisite for any kind of work in this field. The ability to negotiate effectively with a wide range of people and the ability to work within an antidiscriminatory framework are vitally important. I want to make a distinction between mental health advocacy and any other kind of mental health work. Advocacy is much closer in concept to the role of a solicitor than it is to, for instance, the role of a community psychiatric nurse or a psychiatrist.

Ms Mills: It is very important that an advocate has person centred skills and an ability to have warmth and empathy. It is very important that they are able to put their own agenda to one side, even if they do not agree with what the service user is saying, so that they can support the service user to be able to speak up for themselves.

Mr Munn: I hope from our written evidence that people have had a chance to look at the research which we did over a two year period about advocacy in Wales. I have a copy of that with me if people would like it. A quote from that regarding independence states that independence has to be emphasised because I do not think you can do advocacy if you are not independent. One of the most important things is that it needs to be an independent service. As far as skills and attributes are concerned, people who have been doing advocacy for some time have the best ideas about what skills and attributes are required so one should ask those organisations who have been doing it for a number of years. Good listening skills are obvious. Ability to empower the client to speak for themselves whenever possible; a real understanding of mental health difficulties, preferably personal or life experience; an ability to represent their client at all levels, especially with senior medical staff and tribunal members; ability to maintain confidentiality and speak for the client even when they believe it is not in the client's best interest; an ability to search information, access services to help empower the individual and enable them to regain control of their lives. True independence can only be obtained if the advocate is not controlled in any way by other agencies, apart from their client - i.e., the person who is experiencing the mental health difficulty. The advocate must be able to speak freely on their client's behalf. It is not essential to provide a job description for a specialist advocate if this rule of independence is observed as the advocate will seek all the help, legal advice and otherwise, to deal with the problems. However, if current advocates are to take on the legal requirement to provide advocacy, the resources will have to be made available to allow existing advocates and new ones the time and training to do this work. Many current advocacy services do not have the stability to provide a guaranteed service; nor are there sufficient schemes or employees to cover all areas of Wales or, I believe, England.

Q1058 Lord Rix: Several of us sitting round this table were engaged in the Committee stage of the Mental Capacity Bill last night. One of the things that we were debating was independent advocacy. Do you consider the mental health advocates that you are proposing here to be a separate issue from the independent advocacy - or the consultee as it was called until yesterday - in the Mental Capacity Bill? Do you see this as a separate issue specifically for mental health?

Mr Coe: Building on the evidence we gave to you some weeks ago, we wanted to draw a very close line between the two proposals. We followed the debate last night and contributions from Members present were extremely useful. The debate about what an independent consultee is we are extremely pleased to see moving in the right direction. A commitment from Lady Ashton last night to introduce new amendments to make the change in terms of the name is a great move. There are overlaps in terms of advocacy for people who are deemed to lack capacity and the work that is outlined in this Bill for the Mental Health Act advocacy. I would reiterate the point I made when I was last before you, which is that these new developments have to be integrated. They need to be embedded within existing advocacy provision. Lady Ashton accepted last night that the idea of creating an entirely new service was one which was simply not tenable. We know that there are a large number of highly skilled, well run advocacy services out there that are well positioned to deliver both independent mental capacity advocacy as well as Mental Health Act advocacy. We can see that these developments are coming together and moving in the right direction. Not everybody deemed to lack capacity who qualifies for an independent capacity advocate will fall into the bracket of mental health services but that is a question of looking at the broad range of advocacy provision that there is now and ensuring that the right skills and knowledge bases are there within the services that are going to be delivering both. The key issue is getting training right across the board for both groups and just who is going to deliver that training and how standards are going to be set is something I hope we can get into more this morning.

Ms Dyter: I manage a mental health advocacy scheme and I supervise eight different types of advocate. We are already providing a service that would be provided by this advocate and also by the advocate you were discussing last night. I was in the Strangers' Gallery so I heard that debate. I welcome both these because it would mean for us that there is more advocacy. We have a waiting list at the moment. It means we do not have enough resources and I know that we are better off than a lot of other parts of the area in England, Wales and Northern Ireland.

Q1059 Mrs Browning: Under existing legislation and in the practice that you have of advocacy, in those more complex cases where people are detained sometimes for a long time or people are being considered for detention, given the scope of this new piece of legislation in the Bill we are looking at for detention, how frequently in the work of the advocate do you require, in the interests of the patient, to bring in independent, expert witnesses? How easy are they to access at the moment?

Mr Coe: This question about independent experts and the situations in which they would be called in would be when there is an appeal against detention. In those cases, the legal solicitors' firms representing have an option to bring in their own experts to make assessments and reports to the tribunal if they are thought to be useful to the application. In terms of access to independent forms of expertise in the day to day work of advocacy, it would be extremely unusual for the resources to be available in order for those forms of expertise to be brought in. If you are talking about bringing in expert witnesses in the court or tribunal setting, you are talking about several hundreds of pounds of expenditure for that work.

Q1060 Chairman: Representation orders cover that, provided it is asked for by the solicitor.

Mr Coe: That is right. They are not covered by the usual contracts issued by PCTs and local authorities to delivery advocacy services.

Mr Munn: If we are trying to deliver a mental health service more from a user perspective, essentially, the idea would be to ask the patient if they wish or require some special input, if that is at all possible. I appreciate in some cases it may not be but there is going to be a very small number of cases of people who severely lack capacity to enable them to have an opinion about who might help them.

Ms Mills: With mental health, it depends on whether the Mental Health Act will supersede the Mental Capacity Bill. People with mental health problems have shifting capacity. It is not a constant state. Someone might lack capacity at one point in one particular area of their life but it is quite possible that someone can be unwell and lack capacity in one area of their life and not another. That is a very important point. Advance directives are very important when it comes to capacity.

Q1061 Chairman: We have been wrestling with the problem you have highlighted throughout these evidence sessions.

Mr Munn: It is also one of the major skills of an advocate to identify when and how they can get the information from a person who may appear to be quite confused. If you listen to the person properly and have a real understanding of them, you can get their views.

Q1062 Mr Howarth: Mr Munn earlier mentioned the concept of the best interests of the patient. What is the role of an advocate when a course of action that somebody wishes to take is clearly not in their best interests and could even lead to them harming or endangering themselves or others?

Mr Munn: There are boundaries which the advocate cannot work outside. When engaging with a client, the advocate generally goes through those boundaries. If there were ideas of putting children at risk, for example, the advocate would most likely say they could not step outside that and other people would have to be informed. There are confidentiality boundaries as well. Generally speaking, you can get the best information from the patient and they should be leading their recovery. The advocate's role is to enable the patient to speak for themselves. Where they cannot speak for themselves, they speak for them. Where they cannot speak for them, giving their own views, it has to be a view that they have gained from working closely with the patient.

Q1063 Mr Howarth: If in the course of talking to the patient an advocate clearly gets the impression that if they are allowed to do what they want to do they might not damage a child but they might, for example, harass another adult to the point where that adult's life is turned into a misery, would you think it reasonable in those circumstances for the advocate to still put that point of view?

Ms Mills: That is a difficult scenario to answer.

Q1064 Mr Howarth: But it happens.

Ms Mills: Yes. The role of an independent advocate is to speak up on behalf of that person. That would be set out in a contract between the advocate and the service user about what is and is not negotiable. That would be an instance of something not being negotiable, perhaps that person having to signpost other agencies or make other people aware and, in that position, saying quite clearly to the service user, "I am not able to advocate for you in this situation. I am going to have to refer this to someone else" - for example, if someone is going to self-harm. It would be irresponsible of an advocate not to share that with the medical staff. That is about having clear contracts as between an advocate and a service user. The vital point in all of this is that an advocate is there to speak up for and help a service user to speak up for themselves. It is about the advocate and the service user creating a contract with one another about those boundaries.

Mr Munn: For me, even if the mental health patient would appear to be harassing another adult, both people have rights. if the person is feeling harassed, they have the right to step away from all of that. There are other laws and other things that can protect people if that is occurring and one might use those but essentially the advocate has to speak for the client. It is no good the advocate saying what they think is best for that person. That is not what they are about.

Ms Mellanby: There are obvious, complicated issues around that. A lot of advocacy organisations would have clear protocols and be very clear with all the key stakeholders when there are issues of potential serious harm in the action they take. I would like to stress that for many people that go into hospital the experience is confusing and bewildering. Most of the people they come into contact with, the nurses, psychiatrists and social workers, have a very clear duty to assess, diagnose and make decisions. The strength in the role of the advocate is very much them being perhaps the only person that is able to provide support without having that extra responsibility to make a judgment. There are other people who have that assessing and diagnosing responsibility.

Mr Munn: Can I make reference to the UK Advocacy Standards which clearly lay out a lot of standards for advocates and would help advocates to form boundaries and contracts with their clients?

Q1065 Lord Carter: You explain the skills and attributes of advocates very well and their relationship to the patient. The Association for Mental Health Advocates consider that any independent advocacy has a key role to play as an agent for change and is supporting continuous improvement in mental health services generally. Can you explain what you mean by that and what evidence you have to support that view?

Mr Coe: In general terms, having an external presence within statutory services acts to help to focus the minds of clinicians and service managers. Local advocacy services are much better positioned than, for instance, national inspection agencies to monitor and feed back issues of concern to service users. I want to stress that advocacy services working on the ground are having hundreds of issues brought to them every day by a whole range of people who use services. There is all this information that comes in. Many advocacy organisations take the view that if you simply deal with one issue at a time you may well be dealing with the same issue with the same person or other people the next day, the next year and the next decade; whereas if you can establish patterns, if you can pull together the multiplicity of individual reports and use that in a targeted way, working closely with people who use services, you can act to get services changed where they need to be changed. I wanted to give you one example of that. When I was working for an advocacy project in central London, we were working in a hospital where the basic communications with patients from staff was severely lacking. Their ward conditions were very bad. People were routinely not informed about what would happen to them in terms of their care and treatment. Many people reported to us that they were not given information about their rights under the Mental Health Act. This is a central London hospital where the rate of use of the Mental Health Act in admission terms hovered between 90 and 100 per cent, so it is a very high use of the Mental Health Act. We were repeatedly picking up issues about basic courtesies, basic communications from people on the wards. Nurses would routinely walk into people's bedrooms, for instance, without knocking, without saying that they were coming in. We would observe this happening ourselves on a regular basis.

Q1066 Chairman: This raises a question I would like to aim at Mr Henderson. Some of the problems that you have just been describing may have diversity issues involved in them, different customs, the way in which one treats the privacy of people from different ethnic backgrounds and so on. Are you satisfied from the viewpoint of Action for Advocacy that the cultural and ethnic make-up of advocacy organisations reflects the diversity of the people they assist? Also, are you satisfied that in terms of dealing with older patients the diversity of the advocates who are available reflects the increasingly old age profile of the country? Are there the older advocates available who understand the needs of older patients?

Mr Henderson: Within the very limited resources that are available to advocacy schemes currently, most of those schemes would do their level best to ensure that they reflect the diversity of their own local communities. It is especially true in urban areas, of course. Our office is based in south London so our local psychiatric hospitals would be the Maudsley and Guy's where on some wards the majority of the patients appear to be young, black men so the advocacy schemes in that locality would be absolutely striving to ensure that diversity is reflected. That is not to say that every black, male patient wants a black, male advocate. Often, it is the skills and attributes of those advocates and the ability to get them what they want or get them heard which are key but, nevertheless, we take that very seriously and many advocacy schemes have gone down the route of employing particularly older people as advocates or black and Asian advocates and so on. It does raise one issue about the proposals which is that it is probably easier to reflect diversity in the recruitment and use of volunteers because if you only have enough funding to employ three advocacy workers it is very difficult to represent a community with 26 different nationalities. It is easier to deal with volunteers but I understand the reasons why, in the Durham Report which influenced the draft Bill and the advocacy proposals, that is not recommended. Yes, those things are taken very seriously within advocacy. The other point about service improvement in relation to advocacy is that there are probably three ways in which advocacy schemes influence the system. The first is through precedent. You work with one person where something has gone quite badly wrong and you are able to use that as a precedent in the same way that lawyers do. The second is by supporting groups of patients or users who have a similar experience, so supporting group advocacy. The third is by collecting and using statistical information about the numbers of people you see and the kinds of issues that they bring to you, to feed that more data based evidence back into the system to help hospital managers and mental health managers to understand where things may be going wrong.

Ms Mills: My prime role is that of a user development worker. User development work and advocacy are inextricably linked although they are separate roles. One of the reasons that I think advocacy can very much help in terms of service continuity improvement is where advocacy and user involvement link up, enabling people to get into a position where they can recover. It is very important that the concept of recovery is taken on by the Committee because what I have heard from the carers' group this morning is that it is hopeless and people cannot recover but they can recover. Many advocacy groups do one to one advocacy but they also work with groups of service users and those get involved in what is happening within their local communities, within their local trusts, and are very much involved within the workings of those organisations and communities. The inextricable link between user development work and advocacy is crucial when it comes to service improvement and involving users in that. This all points to putting users at the centre of the service. Advocates can support them to do that in that they are in a position where people can speak up for themselves, have a comment, a say and a voice in the service they receive, rather than just being passive recipients.

Q1067 Lord Carter: You explain the situation extremely well in terms of improving service management but under the Bill a patient will potentially have the support of a carer, a nominated person, an advocate and a lawyer. How do you see all those roles relating to each other?

Mr Munn: I would first of all like to remove the advocate from that group of professionals because I do not believe that the advocate should be professionalised. It should be a privileged engagement and partnership with the service user.

Q1068 Lord Carter: You see the service user and the advocate here and the others over there? Is that right?

Mr Munn: Absolutely, at least to a large degree. The advocate, where possible, can get a relationship with the other professionals but must not be seen to be colluding with them; otherwise the service user would not trust them and engage in that. Could I go back to the problem of diversity?

Q1069 Chairman: If you are going to do that can I ask you to deal with the specific issue on the question whether there are sufficient Welsh speaking advocates available in the view of Cymar?

Mr Munn: The answer is no. There also is not the diversity of advocates. One needs to raise the issue about people's choice and whether they might be able to have a male or a female advocate who speaks a different language etc. It is not there. The government will have to invest in the infrastructure of advocacy and there are organisations like The Advocacy Federation, like Cymar, UKAN and so on that are there, forming an infrastructure. That needs to be supported to enable the development of advocacy per se. An advocate can help empower people to enable them to move toward recovery instead of a lifetime of engaging with mental health services. They can find some worth and become useful members of society instead of a burden. I recovered sufficiently to hopefully be able to speak reasonably well to you today and to run my own business and to step away from ten years of the benefit system. If people can be helped to recovery, advocacy will pay for itself as fewer people become dependent on the state. That is the value of putting in the resources that we are talking about.

Q1070 Lord Rix: Those of you present last night will have heard a father of a learning disabled daughter say that many parents resented the intrusion of people offering advocacy. Do you find the same applies to parents in the mental health field?

Ms Dyter: It is more common for people with children with learning difficulties. I think he was coming from the position that an advocate would come in and say something different or do something different from the parents; but an advocate would only do and say what the son or the daughter would want. Quite often, it is a situation we all recognise. It is about your sons and daughters growing up. They do not always see eye to eye and neither should they. An advocate can come in at that point and make a difference. It is not so common in the mental health world in quite the same way because of the capacity. People can be kept as children maybe much longer than they need be. In mental health, nobody is born mentally ill. The problem develops later on so that is a fundamental difference.

Q1071 Baroness McIntosh of Hudnall: I wanted to ask about an issue that comes up in your evidence which relates to the context within which you do the job. The Association has recommended the scrapping of a proposal in the Bill to give advocates access to patients' records without those patients' consent. I think I can envisage what your answer to this question might be but I would be very grateful if you could tell the Committee why you find this proposal as difficult as you clearly do and whether or not having access to patients' records on occasion might help an advocate to do his or her job better.

Ms Dyter: Being an advocate is not quite like anything else. We cannot do anything that the individual does not want us to do. We cannot say anything; we cannot put forward any views. If a service provider tells us something that is not very nice about that individual that we are advocating for, we are not allowed to keep that information to ourselves. We are to all intents and purposes like a loud hailer. When I am trying to explain advocacy to somebody coming across it for the first time who might want an advocate, I say we are a mixture of your best friend and a loud hailer. Our views and what we think do not come into it. Our expertise is in knowing the way through things and negotiating; who is a good person to talk to; maybe go to that person because they will listen and another person will not. We are laying out options. They can sack us at any time. It would be like going behind their backs. Looking at deeply personal information without their permission? You simply cannot do it.

Q1072 Baroness McIntosh of Hudnall: As a matter of personal judgment, I understand entirely what you are saying. Just to be devil's advocate for a moment, if you were in a situation in which you were trying to do what you have variously described to us as the job of an advocate, which is to elicit from your client the information that you then need to speak on that client's behalf, it is sometimes easier, is it not - it may not always be appropriate - to get the information you need if you are in possession of information which will help you to frame your questions? I can see why you find this difficult but can you see no circumstances in which it might help you?

Ms Dyter: We quite often access patients' records but we do it in support of patients requesting to see their records.

Q1073 Chairman: Can we take a straw poll on this issue? Do any of our six witnesses believe that there are any circumstances in which advocates should have access to the patient's medical records without the consent of the patient?

Ms Mills: No.

Mr Munn: No.

Q1074 Chairman: Do any of you think there are circumstances in which you should have access to the patient's medical records with the consent of the patient but without the patient seeing them, which may be a quite different set of circumstances?

Mr Coe: There are some circumstances where that happens. We would support that happening, for instance, where the person using services wants to see what is written about them at a particular time or about a particular circumstance but reading it directly themselves would be quite a distressing experience. There may be all sorts of information there that they do not want to know at all. At the direct request of an advocacy client, I personally have sat and read through their records on their behalf, taken notes and reported back to them, so yes is the answer to that question.

Ms Mills: There are five or six files like that on me at the moment. If you were to read through them, you would see various psychiatrists' opinions of me. You would not necessarily get a picture of who I am. It would not be a very holistic picture. The whole point about advocacy is getting to know the person and not judging them. An awful lot of prejudgments would be made about me if you were to look at my medical records.

Mr Munn: We could accept that but it does not matter because if that happens and the patients have some concerns they have the right to see their own records these days anyway.

Q1075 Chairman: Is that a right which in your judgment is effective, the right to see their own records?

Mr Munn: At the moment, the process is quite difficult. One has to apply and go through the right process to get hold of the records, but it is possible and an advocate would probably help a patient to do that.

Ms Mills: Also, we do not have complete freedom of information. I have heard of people accessing their records and where things have been considered to be damaging to their mental health have been blacked out, so there is some concern over that.

Q1076 Chairman: Do you have a view as a group - you may have disparate views - as to whether there should be an advocacy standards agency as has been established in Scotland?

Mr Coe: It is AMHA's clear view that an advocacy standards agency is the best way forward. We feel that advocacy by its nature and philosophy is very close to the needs of service users. By having a dedicated agency, service users and advocates would be able to have more of an influence in how services are monitored. We would see a standards agency, given that advocacy is still something that is very much in development, as able to be more flexible and adaptable to changing needs and circumstances. What we would like to see is that standards agency reflecting our proposal about embedded advocacy and new proposals being embedded within local services reflecting that requirement and for the standards agency to take account of standards and codes of practice across the board in all kinds of advocacy, not just in capacity advocacy or Mental Health Act advocacy, but to take responsibility across the board. That is going to be much more effective than, for instance, moving out these responsibilities to an inspection agency like the Health Care Commission which, although it has slightly refocused over the last couple of years, is still perceived as being a remote agency that is harder to influence and access. If we look at the alternatives, what we are talking about here is effective accountability and regulation. There is only a very limited number of options here. The government and nobody would accept that this accountability and regulation should be entirely determined by advocacy services. That is simply not tenable when you are talking about statutory roles. It is either going to be large inspections agencies or a new agency. I understand from Scotland that the Advocacy Safeguards Agency, as it is called there, which is established to have this kind of role, has done a lot of good work but it is frustrated because it has not been given the teeth to enforce its inspection and monitoring role. It can go in and do an evaluation of the service but it cannot force through change. These are problems that we are all well aware of in terms of the inspection and accountability of health and social care services generally but I think we have an opportunity here to get it right for what is still very much a developing service.

Q1077 Chairman: Can I do another straw poll? Do any of our witnesses oppose the setting up of an advocacy standards agency, bearing in mind that it is yet another quango being inserted into an already complicated health care system?

Mr Henderson: Our hesitation in recommending this at this stage is that it is too soon in relation to the Scottish initiative to be able to say whether it has had any real impact on standards on the ground. What we need to do is consider the standards that are involved in running any publicly funded body, but also the issues around the quality of the experience of the users. It probably is too soon to be able to say whether or not the Scottish Advocacy Safeguards Agency has achieved that. The other thing to recognise is that there are many, many areas in the country where, off their own bat, advocacy organisations have got together and set their own standards. In places like Leeds, Gloucestershire and Essex, you will find best practice in this area. At this point we would simply be recommending that the advocacy organisations work in partnership with government departments to look at the various options and to weigh up the pros and cons.

Q1078 Chairman: Why is not self-regulation, as suggested by Mr Henderson, as good as setting up a quango?

Mr Munn: I think it is. I am opposed to the quango. Having only received the questions on Monday, it is difficult to have got the views of UKAN but I can speak for them and Cymar. We would oppose that because what we really need is to strengthen the infrastructure, with perhaps the Advocacy Federation or something similar, with people of experience of advocacy, not from an imposed theme from government. We are at this point opposed to that. I am a Health Care Commission reviewer and I believe what the Health Care Commission would do would be to pick up problems in advocacy within local health boards, as they are in Wales, or primary care trusts. They could then reflect that back to the Advocacy Federation or a body that could look at that if that were necessary. Also, individual schemes already do their own monitoring and that is often done by user involvement groups. There is a very good one in Wales, Pontydd, that has done a number of advocacy evaluations.

Q1079 Lord Mayhew of Twysden: There are about 50,000 uses each year made of the Act. The Department reckons that the Bill will require 140 whole time equivalent advocates. You generally thought that was, putting it politely, rather conservative. Some other witnesses have not been quite so polite. Are you aware of the basis upon which the Department has calculated the need imposed by the Bill? If you are, do you think it stands up to real examination?

Mr Coe: We have tried to elicit a direct response on that from the Department and have so far been unsuccessful.

Q1080 Lord Mayhew of Twysden: Can I help you because they have told us that one episode of advocacy would be used each time a person came under compulsion; one more episode in connection with each mental health tribunal hearing and again in connection with each expert panel examination, with each episode lasting two hours. It is fair to say they are not reconsidering that but we do not the outcome.

Mr Coe: Not everybody is subject to compulsory treatment and chooses to use an advocate. However, if they did, on the 140 figure, that would make 140 advocates responsible for about 357 uses of the Mental Health Act each, so that is still quite considerable. On the basis of the figures that you have given there, we were discussing our response to this question and that seems to us to be a huge under-estimate of the level of advocacy input that is often required. The level is variable from person to person. Some people need a one-off meeting but some people request and need advocacy input through many different occasions through the course of their stay under section. If you look at the functions outlined in the draft Bill, it is clearly about helping people to obtain information about their rights and to provide help by way of representation or otherwise. We think that is a useful phrase. That may involve supporting somebody to prepare to go to a ward round. That might happen weekly over a course of , say, six months admission, to participating in care programme approach meetings, to do all the tribunal preparation work and so on. Those figures are severe under-estimates.

Q1081 Lord Mayhew of Twysden: Have you collectively or individually a figure which you consider more realistic?

Mr Coe: No. We consciously do not want to provide figures off the back of an envelope. We have not done in depth research on this. We are aware that the work that has begun under contract to the Department, carried out at Durham University, is going to look at this issue. We are expecting to contribute to that. We do not have the resources here to do the complex research that needs to be done.

Q1082 Lord Mayhew of Twysden: Are you all aware of the conclusions that Cymar derived from the research they have carried out? We have seen the research. Have you all seen it?

Mr Coe: I have seen the research, yes.

Q1083 Lord Mayhew of Twysden: Taking account of different circumstances, do you want to distance yourselves from any general conclusions that they form, particularly about increased workload, or does it ring true to you?

Mr Coe: I know Cymar's views on increased workload. There is the whole question about whether the proposals in the Bill are going to increase the use of the Mental Health Act in general terms and increase the number of sections. I know that is a disputed topic. If you take the government's view that it will not increase, clearly there is not going to be an increase in the episodes of advocacy. However, in terms of the workforce, we think there are enough advocacy providers out there to be able to get advocacy workers trained up to provide this very specific role in general terms. However, specifically, we think in Wales that there are only between 25 and 30 paid advocacy workers there so we think there is a significant capacity issue.

Q1084 Chairman: Are you satisfied that, given the increasing numbers required, training standards can be maintained in a difficult world in which more and more advocacy is required?

Mr Coe: Given the right resources and given an agreed national training programme and an agreed code of practice, absolutely. We have every chance of making that work.

Ms Mills: In order to provide quality provision, there is absolutely no way that 140 people are going to be able to cover diverse needs, rural areas and older people. That is vital. We want a quality service from an advocate.

Chairman: We are going to have to bring the meeting to a close because there is important business in the House of Commons this morning. Can I thank all six of our witnesses. I know you would all have liked to say more but please be reassured that we have read your written evidence as well. Can I thank you for coming and for being such enthusiastic providers of information which has been of value to us.