Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 539 - 560)

THURSDAY 23 APRIL 1998

MR FRED HEDDELL AND MR BRIAN MCGINNIS


Chairman

  539. Mr McGinnis, Mr Heddell, can I welcome you to this session of the Committee. I hope that this session will be a little more peaceful than the last session. I apologise to our previous witnesses. Could I first of all thank you for your helpful written submission and for coming along today and being willing to be cross-examined by Members of the Committee. Could I ask you both to introduce yourselves to our Members.

  (Mr Heddell) I am Fred Heddell. I am Chief Executive of MENCAP, a post I have held since 1990. Prior to that I was Director of Education, Training and Employment for MENCAP and my existence before joining MENCAP was that of a teacher for children with learning disabilities in rural Suffolk.
  (Mr McGinnis) Brian McGinnis, I am Special Adviser to MENCAP and an emigre from the Department of Health.

  540. Can I begin by putting to you the broad question I have put to previous groups of witnesses. Do you perceive from your perspective in MENCAP that there is a Berlin Wall in this division between health and social services? From the point of the users of the services that you are concerned with are you able to define clearly where one boundary ends and the other begins?
  (Mr Heddell) Can I start off with a bit of a preamble and then actually pass the question over to Brian who can probably answer it in more detail than I can. When we first saw the programme for this morning we were a little concerned about the way in which learning disability had been rolled in with mental health. There are similarities and there are considerable overlaps but there are also considerable differences. I am only too well aware that several Members of the Committee have got very personal involvement with learning disabilities and who will know this but I think it is quite important to make that clear from the word go.

  541. Can I respond to that point? Of course, as Chairman I accept responsibility for that and I think I understood fully you would have these grievances and that is why we changed the arrangements.
  (Mr Heddell) I think we knew you would as well, but that is fine. The point I would want to make and the distinction to be drawn really is around the fact that people with learning disabilities are generally either born with that condition or have it identified fairly early on in life. It is a permanent condition that continues in a fairly constant way although it changes in other areas throughout people's lives. A lot of what people with learning disability need are exactly the same services and support and help that the rest of us need from the health service and other areas. We are coming at it from the point of recognising what we are looking for is mechanisms for making sure that the services that we all expect are just as available to people with learning disability and where there are specialist and additional requirements then there are proper mechanisms for meeting those needs in the right way. I would rather think in terms of the individuals and their need for normality rather than starting from the point of view of difference and separation. The whole issue is based on that. It would be more sensible if Brian answered the question about the Berlin Wall.
  (Mr McGinnis) I stood, as probably others here have, beside the Berlin Wall in the days before it was knocked down and I think the analogy is irrelevant. Firstly, the reality is that people at ground level within the professions or with a non-professional role are perfectly capable of working together very creatively, very successfully. Secondly, I would make the bold statement that I doubt very much that most people with learning disability who are among that minority who use specialist services are actually conscious of a major divide between health and social services. I think the third thing to say, going to things said by earlier witnesses, is there are certainly impediments in terms of legislation, in terms of finance, in terms of structures, but it has still been possible, despite those limitations, for people in Oxfordshire, for example, to get very close to working together despite the barriers that have been set up over the years to make that problematic.

  542. You feel that people have been able to find their way around these barriers?
  (Mr McGinnis) I think like so many barriers in implementing social policy they are there in their worst form because people could not be bothered to work together and could not be bothered to make use of opportunities and just saw problems.

  543. Can I pick up a couple of points from your evidence. One relates to organisational methods. I noted very closely your comments about the Northern Ireland model and I assume that MENCAP operates in Northern Ireland.
  (Mr Heddell) Yes.

  544. Obviously the Committee is looking very carefully at Northern Ireland, as you would expect us to. You are of the opinion quite clearly that there are similar problems with the combined health and social services boards in Northern Ireland, this is your experience from your membership, is it not?
  (Mr McGinnis) Yes. I can relate a bit of a personal experience. I was over there fairly recently pursuing a particular issue and it was quite clear that a lot of people in Northern Ireland, despite the structures or because of the structures, were working together very successfully. It was also clear that some people at ground level were point blank refusing to work with each other. It was nothing to do with having an integrated structure that was not working, it was to do with personality, professional background, motivation and so on. While you can make it easier or more difficult for people to work together I honestly do not believe that structures are the crucial factor. I do not think that in Northern Ireland having that combined structure, any more than in London boroughs having social services and housing technically part of the same department under the same director and the same chairman of services, necessarily makes a world of difference.

  545. You stress in your evidence the term "professional identity" and I would be very interested as you are both witnesses with long experience and very relevant experience in terms of our concerns in this inquiry. To pick up a question I asked in the previous session, do you see that the current professional roles are relevant to the direction that services will go over the next few years? I am very conscious in the area that you are concerned with there have been fundamental changes over the last 20 years and yet the professional roles remain largely the same. The area that I am thinking of in particular is some reports are coming out saying that nursing staff concerned with mental illness and mental handicap should have more of a social training. How do you view the existing professional roles, professional training?
  (Mr Heddell) That really depends on the jobs that we are looking at to be done. The experience of the last 20 years you are drawing attention to is actually reflecting the change in the certain type of provision that is being made. The winding down of the old long stay hospitals and the moving away from the medical model as the prime method of residential care for people with learning disability has meant that the nursing role has become much less relevant and significant. We are talking about care staff who work in the community in an ordinary way. It is very interesting, you are probably aware, that in MENCAP one of the things we have been able to do is to develop a very large residential service provision. In effect the staff who work in those homes are in a new profession, they are neither one nor the other. There are some very interesting training issues. As we were developing we were taking staff from traditional health service backgrounds or social service backgrounds but actually in many areas where we are working we have knocked that up. The people who are coming along to work for us are no longer qualified in those ways. Actually we are just looking at a new profession of people who are working in care in the community. There are some very interesting issues. It is very dangerous in my view to think simply in terms of the establishment in which people work. The strength of what we have within our home foundation set-up is not the buildings in which we work but the bank of skills that the staff have. Those same skills will be equally relevant whether they are working in a home like one of our's, in domiciliary services, working in families' own homes and that kind of thing. The actual range of skills is exactly the same. What we see we need to be doing is actually developing new professions in those sorts of areas and obviously that has quite a major implication for the existing people working in those fields.

  546. Would you like to add to that, Mr McGinnis?
  (Mr McGinnis) If you look at the main people barrier to movement out of the large institutions and at the main people who were involved in the early moves out of the institutions you are looking at learning disability nurses. A lot of the pioneers were learning disability nurses. A lot of those who similarly man the barricades, who are responsible for the people who move out of these places, you are talking about learning disability nurses. I think you need within any new specialist service people who are competent, as Fred was saying, to deliver what is needed. For people with profound and multiple disability that includes understanding health needs. You can find people who live a good social life who are malnourished because nobody has looked at their nutritional needs. You can find people who are getting pressure sores because of the position they have to stay in for a length of time, although people are being very kind to them and are very keen on enabling them to get out into the community. You need people who are competent. I think you also need people who have got a professional identity. Despite your background, Chairman, I am going to risk saying this. There is a sense in which particularly social workers in learning disability have not got the professional identity that learning disability nurses have got. It is the length of training and it is the lack so far of the general Social Services' Council and that is coming. I think there is a good guarantee for the individual in that combination of competence and professional identity. Maybe, as Fred says, down the road we are talking about not an existing profession but a new one that the Jay Report suggested a very long time ago. You do need both those things. I think one of the most dangerous myths is the idea that all you need within a specialist or any other service is people who have got good will and the right attitudes and who have done some disability discrimination training. They might be very good at getting on with people but they are not going to be very good at supporting them.

Dr Brand

  547. I am very concerned about the positioning of people with learning disabilities as a group. You are unique as a very specialised service, yet it is also the most important group of people to have truly within the community. The White Paper's suggestion that learning disability should be lumped in with mental health services, I would like your response on that point. If you are not very fond of that idea where would you place the medical services there or would you see that it should be a social services led service and the health services come in just like any other person with health needs and do not have to be of a specialist nature?
  (Mr McGinnis) If there is a sense in which mental health services have suffered over a long period from people staggering from crisis response to crisis response, there is a sense in which people with learning disabilities have suffered from staggering from silence to silence. Most of the main reports from Griffiths onwards have hardly mentioned learning disability at all. There is a sense in which the White Paper covers them, if it covers them at all, by default. It mentions them along with people with mental health problems as probably not fitting the primary community care model. It refers to mental health services as having specialist mental health trusts as the way forward. It leads you to assume because of the silence that that means that learning disability would go with mental health. Simply because I think there are now seven learning disability specialist trusts and that number is going to be reducing quite rapidly, it is not viable as an approach. As regards putting them in with mental health, our colleagues in the mental health world have said they are not keen on that model anyway so that might not come to be. If it did, I think housing learning disability and mental health together in a specialist trust (a) exacerbates the existing confusion between the two conditions and (b) assumes that the same service model precisely in all respects fits both those groups and it does not. There may be places in which mental health and learning disability can be housed in that way. My own preference would be to say that since our goal is supported access to the whole range of ordinary services, since the one person almost everybody with a learning disability has some dealing with is the general practitioner, as you know from your own personal experience, if the way ahead is the primary community trust then learning disability ought to be part of that. You need within that system a focal point which gives some specialism, some understanding, both to the purchasers and to the providers. Of course the other thing the new model of services does is hopelessly confuse the purchasing and providing, apparently not entirely deliberately but that is the outcome. People who are defining what services are needed and paying for them, and the people providing services, both need to have an understanding of what learning disability services ought to comprise.

  548. You are telling us that we need to rethink the traditional way of delivering services for people with learning disabilities?
  (Mr McGinnis) I think so.

  549. Personally I have been very concerned that excellent things are done but they are done in isolation. There is a tremendous cultural, professional clash as to who is responsible. Care is often psychology led rather than psychiatry led and the two will not talk to each other and the poor patient is left in the middle.
  (Mr Heddell) Just to pick up and really emphasise what Brian was saying. I think the reason that Brian butted in before I did is I tend to be a little bit more radical in what I am saying. I would make it absolutely clear that I think any mix between learning disability services, the arrangements for learning disability and mental health, would be wrong and inappropriate unequivocally. Let us look at the people we are dealing with. The vast majority of the people with learning disability that we are concerned with live in the community, most of them live with ordinary families in ordinary streets up and down the country. The prime contact, the initial contact, that most of those people have with health services is the GP. It seems illogical not to create a situation where that is a focal point that we build on and develop. We recently conducted a survey with a number of GPs asking their views. As well as asking people with learning disability views of their GPs we did it the other way around. More than 90 per cent of GPs are dissatisfied with the service that they provide for their patients with a learning disability. There are some very interesting clear training issues. The danger is looking at services as they stand at the present time and not recognising that we need to build and bolster some of the skills that are available. It does seem quite sensible and quite straight forward that the vast majority of needs that people with a learning disability have are going to be in the normal health service systems. Where they have specialist needs some of those specialist needs will be the same as everybody else's and in some cases they may be different and therefore they need to be referred to the appropriate specialisms in the way that they arise elsewhere. I would argue very strongly that the logic for creating separate and different services so that it has the structural mechanism does not make a great deal of sense.

Julia Drown

  550. There is a strong view there that you have very similar service needs to primary care and you will be comfortable with some sort of joint provision of primary care and learning disability service together. Mental health organisations might similarly argue that also has an overlap with primary care. Do you object if you are in a large organisation which includes primary care, mental health and learning disabilities? The reason I say that is because you recognise the problem about viability and learning disability trusts tend not to be a viability but to be too small. That is one way around it, to have it as part of a larger organisation, separate management structures within that but within a large organisation.
  (Mr McGinnis) One way of looking at it is I think it is the case that about 85 per cent of mental health activity is constrained at primary care level. I guess in the case of learning disability probably 95 per cent is. That is the common ground. You need past that common ground some expertise within the local structure so that you can address specialist needs. I go back to my competence point. If I take epilepsy as an example, there is an issue around whether if somebody with a learning disability has severe and complex epilepsy the right person to go to is the general neurologist or the right person to go to is the neuro-psychiatrist. I think the answer is not an absolute one, it is one that says if in a particular service the expertise in complex epilepsy lies with the neuro-psychiatrist he goes to the neuro-psychiatrist. Within a particular service if the psychiatrist does not have that background training but the neurologist deals with all branches of epilepsy then he goes to that person.

Mr Walter

  551. I am looking at the summary of your evidence on the front page where you talk about this thing and then you say if there is one single social policy category label that has to be attached to learning disability, that label is not social, it is not health, it is education. I want to put to you two examples of my own, constituency examples, and see if you can comment because I think it is part of the dilemma. I had the case of an autistic child where we successfully got the education committee to put aside £140,000 a year for a residential place for that child, so that comes out of the education budget, and a week later I am helping to put in a bid to the Department for Education for one of my local schools to get its science block updated which would cost £300,000. That bid failed. So the A level students there are still using a science block that is 40 years out of date where the bunsen burners do not work and the water does not and all the rest, but nonetheless the education budget is providing this facility. I am not saying that either of those cases were a better case but in your evidence you are suggesting that education is where that should be. Is that right?
  (Mr McGinnis) The reason I put it in those terms is I would be unhappy with the thought that you run away from the medical model, whatever that means, into a social model which implies that housing and being part of the community and health and everything else is somehow best dealt with by the social services department because that is equally untrue. Specifically on your question about resources, we have got very good relations with the National Autistic Society so I need to word this rather carefully. There has been a pressure because of the lack of competence in many schools, including special schools, to deal with children with severe autism, not just those somewhere on the autistic spectrum but those who have got severe autism—

  552. This was obviously a severe case with the money involved.
  (Mr McGinnis) To go for residential schools somewhere else usually at a relatively high cost compared with what might have been achieved locally. I suspect that as the policy for special needs locally advances, whether it is a special school or mainstream school, there will be more local competence to deal with some of the children who hitherto have gone out of county, out of borough, partly on social and partly on educational grounds. If you ask the direct question is any one youngster worth that level of expenditure then, as I would say in the case of people with profound and multiple disability who might also cost a great deal, the answer has to be yes if at the end of the day that cost is the only means of delivering the education from which that child will benefit for the rest of their life.
  (Mr Heddell) The reality is that caring for that child properly, no matter who is paying for it, is going to cost that amount of money. There is a sense in which some of the frustrations that we have are getting into these arguments about which pot it comes out of and that kind of thing. The issue is the child concerned. I think the general point about education is that for an awful lot of people with learning disability the treatment, if we can use those health terms, is about education for development and developing skills and abilities. If you think from a medical point of view what is the treatment then the treatment is education for a great many of the sorts of people that we are dealing with. That is why we make that suggestion, slightly tongue in cheek. I think the point that we are trying to make quite simply is that the objectives for people with learning disability are around continuing development as people and opportunities that create that and make that possible. Any pigeonholing of services and so on is going to create barriers which make that difficult to do. You need a flexibility that can work across all of the boundaries.

Julia Drown

  553. You said in your evidence about how children were missing out on schooling and adults were missing out on day service opportunities just because nobody is prepared to handle the medication. Can you give us a specific recommendation about how that problem should be overcome?
  (Mr Heddell) Taking the schooling issue, there are some people whose education is restricted by their medical condition. Clearly in schools, whatever form that takes, whether that be special or integrated mainstream schooling, it does seem a little silly that we find ourselves in situations where children are excluded from what they need in educational needs because there is nobody there to give them the pills or maybe the injection or whatever else that might be. Obviously you get into all of the discussions of competencies and whether or not schools need nurses and so on who are qualified in those particular areas. I think I would suggest that specific training in the needs of individuals can be given to all sorts of people if you can find ways of breaking down some of the traditional professional barriers that exist. It is an issue that can be faced equally in residential services, that regularly you find yourself in a situation where you have to find people with the right level of competence and often that does mean qualified nurses and that kind of thing to work in circumstances where they can administer drugs and other things appropriately. It is very sad when people's lifestyle is severely restricted not because of the medical condition they have got but because of the administration of the drugs or other treatment they need.

  554. And yet the parents of those children—
  (Mr Heddell) They have done it for years. This is the silly dilemma, that many, many parents have done these things for years, they have been trained to do it. Nobody has gone into enormous studies of their background or qualifications or whatever. It seems logical to find ways of moving that forward. Having said that, there are risks and I think we have got to be very, very careful not to just make the simple assumption you can pass on the same things that parents do to professionals working in the field. There are risks in that and we need to examine those very carefully. I am convinced that there are ways of overcoming those problems.
  (Mr McGinnis) Can I just add a footnote to that if I may. The example we have got very much in mind is of a child who needed rectal valium because of a severe and prolonged fit and had to wait half an hour until the ambulance arrived. Nobody is pretending that administrating rectal valium is a pleasant job, nobody is pretending that all members of staff would want to be trained to carry out that function. There is a same sex issue. There is training, there is insurance, there is willingness to co-operate and so on. If a school or any other service sees itself as competent to meet a child's or adult's needs and the barrier is that they have not got in place a system whereby somebody who is competent or authorised can do immediately what needs to be done immediately that is a gross failure.

Chairman

  555. Could I refer to a specific part of your evidence where you have argued for a central Government strategy for disability services. I wonder if you could say a bit more about that, in particular which you would see as being the lead Government department, particularly the point you made very strongly about education? I am conscious that I address my local MENCAP's AGM on Friday of this week and I know that the education issue will be a key issue. Could you expand on your evidence on that particular point?
  (Mr McGinnis) If we are talking about lead departments I have to say in my days in the Civil Service there were Berlin Walls between departments and at administerial and official level there was not always a great deal of communication. I sense that things have changed. I am now on the outside but I sense that departments work together. I think within existing structures the lead department is the Department of Health in which you read social services as part of that. I think that department is well capable of working with the Department for Education and Employment and those two departments are now working together. I think that is where the lead lies. What is missing is any clear strategy. In a sense we are getting towards the tail end of the institutional era. There is a feeling around that community care has been achieved, which is a long way from the truth. There is not extant at the moment a clear, national strategic framework that can say to local participants in implementing it "here is what our strategy for people with learning disability is". I think the lead for that must lie with the Department of Health.
  (Mr Heddell) Can I just add to that a slight caveat. There has been a rolling together and a muddling together of mental health and learning disability issues within the Department of Health in recent years which I do not think has been helpful and constructive.

  556. In looking across the country at examples of good practice and bad practice, clearly I am aware and you will be aware of local authorities that have developed effective strategies, do you see within those strategies that they have adopted organisational models that you would commend or perhaps, looking at it the other way around, you see organisational problems that could be very easily addressed that could impact in a positive way on service users and their families?
  (Mr McGinnis) I do not think that there emerges from looking around the country any one clear model which delivers in the way that others do not. If you look at some of the London boroughs, and I will name Bexley and Lewisham, there have been over the years different attempts to achieve a common aim which is better working together between those who have got a social services label and those who have got a health label. I do not think anybody has yet arrived at a single model which says "this is the way of doing things". Although it is still at an early stage I am quite enthusiastic about the Oxfordshire approach which is saying how close can we get. Section 28(a), which has been touched on in the past, has not worked for a number of reasons. One, it has been simply about joint finance and the jointness has stopped when the finance has stopped. Secondly, the Section 28(a) requirements have not been complied with in a lot of areas. What Section 28(a) envisages is that people will plan together, spend together, monitor together. There are quite a number of places where the money is not planned together, it is unilateral. I suspect in the majority of places it is not actually monitored together, the money is allocated and people forget about it. It has not worked despite what could have been done within the framework of Section 28(a). As earlier witnesses have said, the core issue is the ability to bring together core funding. That is the only way you will affect things, not at the margins but at the centre of services by actually being able to put the money together. If the Committee looks at where Oxfordshire has got to and where Oxfordshire has found difficulties in going as far as they would like to go you will probably get a pretty good idea of where there are still hang-ups which are there despite goodwill to go beyond them.

  557. Mr Heddell?
  (Mr Heddell) No, that is fine, thank you.

  558. Do my colleagues have any further questions? If not, do you have any further points that you wish to make?
  (Mr Heddell) One thing I would like to add. Because of the nature of the move away from the long stay hospitals and the changes in approach to residents, one of the great difficulties that has arisen in recent years is that the actual number of residential places that are available, bed spaces and so on, has not risen or changed very much. There has been a shift but we have not developed much new opportunity. A lot of work that we have done in recent years shows very clearly that there is now a high proportion of people with learning disability who are still living with their parents who are already over retirement age and the crisis that that is ultimately going to create is obvious? It is a major issue. From extrapolating figures we did on certain sample studies three or four years ago now we anticipate we actually need to be developing something between 5,000 and 6,000 bed spaces a year simply to meet the needs. This is nothing to do with the desirability of people moving away from the family home, it is simply to meet the crisis needs that are likely to arise. Current levels of development are around the 2,000 bed space level. Clearly there is going to be a crisis that is going to develop quickly. The problem we have is we have traditionally looked to health authority funding and other social services and there are all sorts of restrictions and changes. The role of the housing corporation and the development and use of housing association funding and so on has been a major factor in what we have done thus far. A lot of these things are becoming more difficult and tighter. I would like to stress very clearly that there is quite a serious crisis which I think is going to land back on the health authority doorstep because of the nature of the crisis if it is not solved by other people. I think that is a major issue.

Chairman: One final point which Andrew Lansley would like to raise on direct payments.

Mr Lansley

  559. I think our previous witnesses from MIND in their written evidence talked about the advantages that could be derived through the use of direct payments and you have made reference to it as well. I wondered if you could elaborate on what value you saw in the use of direct payments and how that might be developed?
  (Mr Heddell) I do not think there is a straight forward and simple answer. Clearly the concept of direct payments and the independence of individuals and developing the independence of individuals to control their own destiny to quite a considerable extent is obviously very valuable and we would see that happening. This is one of the questions we could have been discussing with our colleague from Holland earlier this morning because they have been developing that area quite considerably. We have got quite serious worries about the political potential here for shortfalls in the amounts of money being available, the pressures that it could well put on existing families and so on if there is not quite enough money in the direct payment to provide what a family feels is necessary for an individual. The temptation to top that up is obvious. To put it quite bluntly, we would be very worried that this would be used as a mechanism for gradually reducing expenses for those individuals and shifting responsibility on to families and other sources of income.

  560. Or presumably towards replacing the system of criteria for charging to one of more generalised means testing?
  (Mr Heddell) Yes. It is one of those difficult dilemmas. In an ideal world where there was enough money for everything that we wanted then the concept of giving people that independence would be wonderful. I think in the world in which we work there are lots of risks and worries associated with that. There is now the opportunity for some initial steps in direct payments and it will be interesting to see how it works. I would not want to rush too quickly into expanding that until we have some more evidence.

  Chairman: Can I thank you both once again for your oral submission and your earlier written evidence, we are most grateful to you.





 
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