Examination of Witnesses (Questions 539
THURSDAY 23 APRIL 1998
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
(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
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
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
(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
(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.
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.
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
(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.
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
(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.
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
(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
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
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.
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.