Examination of Witnesses (Questions 680-699)|
21 OCTOBER 2003
Q680 Baroness McIntosh of Hudnall:
It has been put to us by other witnesses that this Bill as currently
drafted is potentially more of a charter for carers and service
providers than it is a protection for people who may lack capacity
to make decisions. Do you have a view about that? Can you tell
us from your experience how it would be best for people with incapacity
to be informed about what the Draft Bill could do for them?
Mr Allen: It certainly offers
protection for carers which we are grateful for because it gives
clarity about working in best interests. However, as a provider
of care, we are regulated and monitored by National Care Standards
and other organisations. There are regulatory bodies ensuring
that we are fulfilling our obligations satisfactorily. In addition,
we are monitored through care contracts and specifications to
ensure that we deliver care appropriately. If there were to be
an abuse of the carer's authority, that would be easily picked
up through the monitoring that takes place.
Q681 Baroness McIntosh of Hudnall:
It would be fair to say, would it not, that that applies to you
because you provide your care in a formal setting? There are many
carers who are not subject to that kind of monitoring.
Mr Allen: Certainly. I am talking
about professional carers.
Q682 Baroness McIntosh of Hudnall:
That is who you are here to represent. It is slightly unfair to
put you on the spot about those people who do not do what you
do but do you have any view about the Bill in general in relation
to the authority perhaps that it gives to people who are not regulated
in the way that you are?
Mr Allen: I think the Bill is
fairly clear about what is and what is not permissible. Also,
in terms of best interest, I think it is quite clear. Also, the
additional assessment of the current protection gives a quite
clear framework in my mind as to what is and is not acceptable.
Q683 Lord Rix: Do you think, on the
other hand, that this Bill erodes the protective powers which
we parents seem naturally to assume for our children? They will
of course go on to adulthood. Should our protective powers then
Dr Brook: On the contrary. We
feel that our protective powers have been substantially eroded
or are absent, once our children reach the age of formal majority.
The Bill would help us. That is one reason why we need it. We
think there is a need to make a distinction between family carers
who are unpaidand they are the only ones who maintain a
continuous interest and concern in an individual throughout life,
giving unconditional love and affectionand care workers
who are paid and who change frequently.
Mr Cramp: In the Bill, if it was
possible, I would want to make it separate, where paid carers
are separated from family carers. The state saves quite a lot
because of parents who are unpaid carers but in terms of the question
of abuse, if you work for an organisation and you abuse anything,
you will be subject to some form of discipline. With a carer it
is more difficult. There is no formal power and we strongly recommend
that there is some kind of distinction between them.
Q684 Baroness McIntosh of Hudnall:
We did not get an answer to the second part of the question and
I think it would be helpful if you could comment. Perhaps I can
put it slightly differently. Can you comment on your responsibility
within either a formal or an informal framework to ensure that
the people to whom you provide care understand their rights and
the protection that is offered to them by the Bill? Do you see
yourselves as having a direct responsibility to interpret or ensure
that the law is communicated or that the provisions of the Bill
Mr Allen: Yes. We would have a
responsibility to ensure that people were fully aware of their
rights under the Bill.
Mr Sugden: From a parental point
of view, there are going to be several occasions where the severely
incapacitated will not understand anyway. There are degrees of
this. Obviously one tries. Parents get more difficulties throughout
the lives of these folk anyway. This is not a difficulty in my
particular view or my wife's view, I am quite sure, because one
naturally does this, but there are going to be some who simply
will not understand, full stop. It cannot be helped.
Q685 Mrs Browning: Simon Cramp was
asking for us to try and define on the face of the Bill between
the paid carer and the voluntary carer, usually a close family
relative. In what context do you want us to make this distinction?
Mr Cramp: If my parents were looking
after me, I would want to make them unpaid carers. In a previous
life, I used to work for social services, so that is where I see
the paid carers. In terms of advocacy, there is a line where you
get advocacy for the person. There are procedures, whatever the
organisation or whatever is in parliamentary law, which are set
in and they restrict what you can do. There is more of a legal
footing if you abuse somebody in any criminal way. It is easy
to go through the court system where family carers would find
that perhaps more difficult.
Q686 Mrs Browning: Empowerment and
the rights of individuals on the face of this Bill are the purpose
of this Bill but in some cases the decisions which individuals
wish to make may conflict with the wishes of the family carers
and the care workers. Do you think the Bill makes sufficient provision
for the resolution of such conflict and that people are enlightened
in this area?
Dr Brook: A Bill like this and
the codes of practice which accompany it is only going to begin
the process of changing the whole climate of opinion and behaviour
by all those concerned. It is not realistic to expect such a change
to happen overnight, even if the Bill became an Act, but we would
expect over time that in some cases through case law, established
by reference to the Court of Protection, and in other cases through
informal advice which we hope the Court will be able to give,
as the Court of Protection has done in the past on financial matters,
you begin to influence the climate of opinion making and behaviour.
Some guidance on assessing the reliability of decision making
by a person with a particular degree of incapacity is going to
be necessary and we have some views on that too.
Q687 Mrs Browning: There is nothing
on the face of the Bill about independent advocacy and a lot of
witnesses have pressed us to consider including this in the Bill.
What happens when you have a difference of opinion between the
independent advocate and the carer closer to the person, perhaps
Dr Brook: We are assuming straight
away that there will be an independent advocate.
Q688 Mrs Browning: I am saying if
we were to incorporate that within the Bill.
Dr Brook: There are some considerations
there. This is why there is recourse to the Court of Protection.
There will be an earlier stage where one can get informal advice.
The existence of the Court of Protection and the opportunity to
go there to resolve disputes or to get a ruling which will establish
case law is important. There will be some occasions when there
is clear disagreement. Very often, they are about simple day to
day matters and these need more independent discussion between
the person who really is the decision maker and the person wanting
to provide a service. It is a fallacy to imagine that a so-called
independent advocate can come into any situation and very quickly
become appraised of all the implications of the decision and almost
make an adjudication. I as a receiver have been in a situation
of having an advocate appointed by the local authority because
they were in disagreement with my view about the provision that
should be made for a person. I have known this person for 20 years.
This person has no speech and a very low mental age. The advocate
was totally at sea. In the end, what I wanted was brought about.
Afterwards, it was agreed that it was the right decision. Had
I not had the knowledge and authority to stand up to the advocate,
the advocate would have endorsed what the local authority wanted,
which I discovered afterwards was placement in a residential home
where they had a block contract and a vacancy, regardless of suitability
for the individual. This is a practical situation that occurs
all the time.
Mr Cramp: I would agree to some
extent but there is an element of risk with all this. Everybody
is human. If we all looked like robots it would be a very worrying
thing. We all make mistakes. As the Bill is drafted, perhaps there
could be letters about complaints, perhaps some kind of panel
that is accessible locally, made up of a lay person and someone
from social services. I agree with my colleagues to some extent
but if the independent advocate makes a mistake there should be
some kind of mechanism to help that process through so that it
is then transparent. There is no way that the person who makes
the complaint is always going to have it upheld.
Q689 Mrs Humble: I want to raise
the point again about defining what we mean by advocacy services.
An independent advocate is usually a volunteer who has been trained
by the local advocacy service. It is not an adjudicator. The advocate
is the voice of the individual. Dr Brook, you raised an interesting
point because you seem to be saying that for certain individuals
who are profoundly handicapped their level of capacity or lack
of capacity is such that they may not be able to communicate to
that advocate. You used the phrase, "The advocate was all
Dr Brook: Yes.
Q690 Mrs Humble: How can we address
the concerns raised with us by our previous witnesses that, for
many people, even with very profound handicaps, if an effort is
made to try and open lines of communication, they can act as the
voice of that individual?
Dr Brook: I would challenge a
good deal of that argument. The ability of severely handicapped
people is limited obviously by their own intelligence. My son,
mental age three; actual age 51, can clearly indicate decisions
on what you might call immediate gratification: what he might
want to eat; what he might want to put on for clothing, even though
he might not get it on the right way round. We have known him
for 50 odd years and it has taken a long time to understand some
of his signals. There is no way in which a person coming in from
outside would accumulate that ability to interpret his noises
and signals and his happiness to be able to say with confidence
that that is what he is choosing to do. The people who work with
him have never worked with him for long periods of time because
care staff are constantly changing. They would know him better
even than bringing in someone from outside. The phrase "independent
advocate" needs closer examination because most of the advocacy
services are totally dependent on public funding. In my area,
we have quite a lot to do with them. More often than not, they
are influenced by what the authorities are wanting at any particular
time. They are not closely associated with an individual. Citizen
advocates, when first introduced, were aiming to do that. We had
on our committee the longest serving citizen advocate in this
country but there has been a very high turnover. It has taken
her 14 years or so to get to know the person for whom she now
advocates very effectively.
Q691 Mrs Humble: Given the caveats
that you have outlined from your own personal experience about
profoundly handicapped people, given your own experience of your
own local advocacy service, which is not my experience of my local
advocacy service, do you think there should be provision for advocacy
services on the face of the Bill? If that is the case, how can
we monitor the delivery of those services and look at the quality
of those services, bearing in mind that advocacy services will
be providing support and a voice for people not as profoundly
handicapped as your child, people with variable handicaps and
within the context of the whole of the provision of this Bill?
Dr Brook: Where people recognise
the need to be assisted in expressing their needs or their point
of view, yes, there is a need for this kind of service. We have
to remember too that many people who are in regular contact with
people with disabilities are in particular situations very much
acting as their advocates. They do find out what they want and
they do press the point. These can be teachers, nurses or psychiatrists.
It is wrong to assume they are not doing that, although they may
not use the term "advocate". When you come to having
people acting independently as advocates, considerations of cost
and availability become important. There are some important calculations
that I have done for my local advocacy service which is multiplied
nationally, implying tens of millions of pounds to deliver what
is even now not a very adequate service.
Q692 Mrs Humble: Are you saying that
you would not want us to argue for one?
Dr Brook: The codes of practice
can deal with the recognition that some people will wish to haveand
indeed some parents will wish to havesome assistance in
expressing their point of view and it can come from a variety
of sources. Any one of the sources that is acceptable should be
recognised as expressing that person's point of view. To include
in the Bill the right to a service and commit the government to
providing one will be a very foolish move because it would not
happen; you would not get the money and you would not get sufficient
individuals. Even in areas where there is a service, you find
that one advocate is acting for many different individuals. Citizen
advocacy, the one to one service, is relatively rare compared
with the other sort. They all call themselves independent advocates.
When we look at the programmes and the sources of finance, it
is difficult to accept that they are really independent. The voluntary
bodies can do quite a lot. The charities can do quite a lot but
trying to turn it into a national service I think will fail. It
will absorb a lot of start-up money and government money in the
interval before it is finally recognised.
Q693 Mrs Humble: Does everybody agree
with Dr Brook or disagree?
Mr Cramp: I disagree. When Valuing
People was published two years ago, I think about 400 people
benefited. While I agree that there are some concerns, if it does
not work out quite as we would like it, it does not mean to say
it should be on the face of the Bill. I say that not just from
the learning disability point of view but from the point of view
of all disabilities. We all need some kind of advocate or some
help at some point in our lives.
Q694 Chairman: Are you suggesting
that the need for advocacy should be in the code of practice because
that is much more flexible?
Dr Brook: Yes.
Mr Sugden: Either on the face
of it or in the codes of practice butand here is a big
"but"we have to have the family to be consulted
there because something like 60 or 70% of the sort of people we
are dealing with at our end are looked after by the family anyway,
which is frightfully important, and therefore we may need a definition
of family carer. We may need a definition of volunteer carer,
paid carer and advocate. As Dr Brook says, advocates come in many
shapes and sizes, including paid.
Q695 Lord Rix: Would you care to
offer any figures, actual numbers?
Mr Sugden: Of, sorry?
Q696 Lord Rix: Of people who might
require advocates? Have you any idea how many?
Mr Sugden: I would be plucking
figures out of the sky. Come on, Maurice, help me.
Q697 Lord Rix: Dr Brook did quote
Dr Brook: That is a good question.
Some of the people speaking this afternoon are probably in the
category of mild to moderate handicap of which we have about one
million in the country. We have about 175,000 severely profoundly
handicapped. To put this into context, in my area in Surrey, we
have advocacy partners who I believe may have given evidence to
this Committee. From their last annual report it is possible to
work out that they are giving a service perhaps to 510 people
out of a handicapped population of about 40,000. The cost of that
service seems to be about £780 per person, of which 80% is
coming now from public funds. Now they may be able to contradict
these figures and have different figures but I can only take my
calculation from their annual report. Your experience in Blackpool
might shed some light on this because I do think we have to be
hard headed about any proposals of this kind. Just to multiply
that service which, as I say, is only now touching a small proportion
of the people in the area, to say 100,000 people nationally, which
is under 10 per cent of those available, will require £78
million, of which £62 million will come from the public purse
if they continue to be funded at the present rate. Now I can think
of much better ways of spending £60 million in services to
this group of people than that way and there are other ways of
approaching it I think.
Q698 Laura Moffatt: Chairman, it
is obvious that caring parentsas has been demonstrated
around this table both by those who are asking questions and those
who are answeringwill fight like alley cats for their children
and that does not matter if you do not like the girlfriend your
son has brought home or if you are having to look after someone
with profound learning disabilities and making day to day decisions
for them, so that is a given. The problem that this Bill faces
is that not everyone with either a learning disability or someone
who suffers temporary incapacity or develops an incapacity has
that sort of care. Now this Bill has to deal with that. It is
incredibly important to hear from parents their view but we have
to find a way for the Bill to deal with that. We have to find
some middle ground where the parents feel secure in the fact that
there may be different people who can assist with decision making,
there may be those who can add to that process and give value
to that process. Can you tell me if you feel that there is any
middle ground for you or if you believe firmly that there is no
Dr Brook: There is value in particular
situations, as I think I said earlier, but it is a limited application
and what seems to be being proposed will be advocates who would
operate alongside parents, for example, particularly in cases
of dispute. You cannot have a situation in which you have more
than one decision maker.
Q699 Laura Moffatt: You can have
partnership in decision making?
Dr Brook: Yes, indeed, but at
the end of the day one person is taking the responsibility and
it has to be the people who have to live long term with the consequences.