Examination of Witnesses (Questions 151-159)|
17 SEPTEMBER 2003
Q151 Chairman: Can I start by saying
good afternoon, thanking you for the written evidence and taking
time to attend. We are required to report on the draft Bill, we
are not preparing a White Paper on mental incapacity, therefore,
all the questions you have seen are structured around the structure
of the Bill and that is our task, to report on the draft Bill.
Perhaps you could all introduce yourselves.
Mr Broach: Thank you very much
and particularly for this second day of evidence of the Making
Decisions Alliance before the Committee. Our colleagues yesterday
did not take the opportunity to introduce the Alliance. There
are 27 organisations representing millions of people with impaired
capacity and those who care for them. I am Steve Broach, I am
co-Chair of the Alliance and here also to represent the National
Autistic Society. The only point I would like to make regarding
autism is that it is a spectrum disorder and that for the vast
majority of people with the autistic spectrum, hundreds of thousands
of adults in England and Wales, their capacity is not going to
be easily ascertained. It is not black and white that they are
able to make decisions or unable, so our key concern is that an
accurate and informed assessment has to take place before the
powers in this Bill apply to those adults and also that they have
the opportunity to challenge both assessments and decisions that
are made about them.
Mr Kramer: I am Richard Kramer
and I am head of policy at Turning Point. The opening comment
I would like to make is really to talk a little about the history
of learning disability because in the past it was assumed that
people were not competent to make any decisions of any sort, so
decisions were often made by staff in service settings without
any attempt to distinguish between decisions that they could make
and those that they could not or could make with support and the
emphasis unfortunately was on group rather than supporting individual
decision-making. Sometimes the intentions were benevolently misguided
and sometimes it amounted to exploitation or inappropriate treatment
and more routinely people who did not need hospital treatment
spent a lifetime in hospital for the convenience of people, and
our society is benevolent and that is why this Bill is so important
because we feel that the absence of legal procedures in decision-making
actually discriminates against people who cannot make decisions
and the need to see this legislation in the broad light of disability
Ms Clipson: My name is Caroline
Clipson and I am from the disability charity SCOPE, which has
a focus on people with cerebral palsy. Cerebral palsy is a condition
which can affect people in very many different ways, but my particular
interest and involvement in terms of the Making Decisions Alliance
has been to look at those people who, with different conditions,
have their communication impaired in different ways and so that
is perhaps what my particular interest has been in, and some of
the issues I will be talking about relate to that issue.
Ms Seyman: I am Susannah Seyman
from the Down's Syndrome Association and the DSA has campaigned
for many years about the inequalities in healthcare for people
with Down's Syndrome and this Bill is of particular interest to
us to protect people who suffer from bad decisions which have
Ms Morgan: I am Hazel Morgan,
head of the Foundation for People with Learning Disabilities which
is part of the Mental Health Foundation. The Foundation for People
with Learning Disabilities uses its research projects to promote
the rights of people with learning disabilities and their families.
One area of our work recently has been around choice for people
with severe and profound learning disabilities which is obviously
very important in the context of this Bill. To my work I bring
the experience of having been a family carer and the mother of
a son with severe learning disabilities and during his lifetime
I became aware of the issues around decision-making, the issues
for him and the issues for family carers, particularly in the
final year of his life when he had many healthcare issues as a
Q152 Chairman: Thank you. In situations
where "there is a risk that the individual's own best interests
would not in fact be the paramount consideration", do you
believe that referring to "best personal interests"
will significantly impact on decisions taken on behalf of individuals
with incapacity? Does the proposed "best interests"
checklist strike a balance between supporting the autonomy of
the person with incapacity and providing them with protection?
Mr Kramer: I think the starting
point is that there is concern over the term "best interests"
largely because it is an outdated term. It is used principally
in courts of law now to determine the right of medical practitioners
to make decisions about medical treatment, so the term is outdated
and it does not reflect the wide decision-making powers that will
be in the Mental Incapacity Bill. The second point is the point
that has been raised by the Law Society, which we support, which
is the terminology "best interests" and the concern
that it may allow people to impose their views on what is in someone's
best interests or what they would choose for themselves. We think
that because of that and because it may be difficult to change
a person's interpretation of "best interests", a new
term, such as "best personal interests" is needed. I
think the most important point is the starting point for the legislation.
The starting point is really to maximise people's own decision-making
ability and supporting that and that should be the guiding principle
in the Bill. The fact that it seems that "best interests"
is the guiding principle has given some misunderstanding that
the Bill may restrict or impose a view over somebody's ability
to make decisions, so, as a starting point, the guiding principle
should be the right to make decisions rather than making an alternative
frame for those who cannot make decisions.
Mr Broach: The conversation yesterday
and indeed with the Scottish witnesses focused very much on "best
interests" and the difference between that and "benefit".
I think it is very important also to look at the early reports
in the draft Bill, clause 2, and the safeguards it puts in around
assessment in terms of how people should or should not fall under
the powers of this Bill. Two very important ones are 2(2), that,
"A person is not to be treated as unable to make a decision
merely because he makes an unwise decision". That is a very
important safeguard relating to Richard's point around assumptions
about people with learning disabilities, and that is not in the
Scottish Act. Also in 2(3), that all practicable steps have to
be taken to help the person make a decision before they are described
as unable to do so, again that is absolutely important, although
it needs to be defined as to what practicable steps would be considered
in those circumstances, a broad outline of the principal section
of best interests and also the second clause in the Bill about
the ability to make decisions.
Q153 Chairman: Would you be concerned
if, under 2(2), a person clearly made a very, very unwise decision
regarding their accommodation, their welfare or their finance
or whatever? Even though it was a seriously unwise decision, you
would stand by the right of that person who had made that decision?
Mr Broach: Yes, we would and the
test of capacity that is set out in 2(1), that simply the person
can understand the decision and also can understand the foreseeable
consequences of it, if a person is fully aware of the consequences
and still chooses to make that decision, that is their legal right.
Q154 Chairman: I suppose you would
argue that they would be on the same footing as somebody with
capacity who equally made unwise decisions?
Mr Broach: Precisely, that is
Q155 Baroness McIntosh of Hudnall:
I just wanted to pick up on the issue you have already raised
about Scotland and the terminology in the Scottish Bill. We asked
your colleagues, as you have already noted, but it does seem to
me that this "best interests" terminology is, as I described
it yesterday, volatile and it does seem to me to be volatile,
that it can have the potential to be used and abused. I am interested
to know that given that you clearly accept that, you still feel
that it is preferable to the kind of terminology that is in the
Scottish Bill which describes quite clearly the necessity that
there should be a benefit to the person on whose behalf decisions
are taken. This is in the situation where decisions do have to
be taken on somebody's behalf where it is clear that they do lack
Mr Broach: As an initial answer
to that, our thinking around this Bill was framed by the Bill
that was put in front of us, so we have tried to amend the language
that is used here and that is why "best personal interests"
was one of our preferred options. In terms of whether "benefit"
is actually preferable to "best interests", I think
the point to make is that both are subjective and a benefit to
an individual is also not an objective criterion. It also means
that it is impossible for someone to take a decision that is not
transparently of benefit to that individual because even if the
decision may be in the person's wishes and feelings as the decision
they wanted to take, you would not be able to take it unless it
was to their benefit, so I think that both terms are problematic.
Mr Kramer: I think the Scottish
legislation is good in that it has a statement of principle which
defines the tone of the Act and ensures more consistent implementation
and I think that is important. The Making Decisions Alliance have
said that there need to be some principles that will set the tone
of the Act and the main principle is the right to make decisions,
the recognition of people's autonomy, to preserve autonomy and
to protect those with impaired autonomy. The other principles
could be around a non-discrimination quality, supporting in terms
of information, so there are a number of principles which can
govern the Bill. The Scottish have chosen "benefit"
which is a sound principle. There are other principles and I think
that autonomy and the right to support decision-making would be
ones for us.
Q156 Baroness McIntosh of Hudnall:
I find it quite hard to understand what the real value is that
is added by "personal" in relation to best interests.
It does not seem to me to clarify it very helpfully and I would
be very interested to know why you want to amend it in that way.
Mr Kramer: Because I think it
can affect the way decisions are made. If you are thinking of
the best personal interests, it can mean starting from the individual,
thinking how the individual can communicate, how we can break
down facts to a decision, how we can ensure the right support,
how we can ensure the environment is suitable to allow decisions
to be made in the calm environment, so looking at the nature of
the decision, the timing of the decision and the use of communication
methods, the word "personal" would promote good practice
in all of those areas.
Q157 Lord Rix: How would you protect
the best interests of the person with a learning disability who
already has perhaps limited powers of decision-making, but then
those powers are gradually diminished through age or mental illness?
How would you see that the Bill should be written to protect such
Mr Kramer: I think the Bill does
recognise that capacity can change, that people can develop incapacity
with time and experience and, as you say, as people grow older
they may develop dementia and lose capacity. I think that is recognised
by the functional test and I think that is also recognised by
the "best interests" test which allows people to participate
in decision-making where they can do so, so someone who develops
dementia may have a reduced capacity to make decisions, but they
still may be able to participate in the decision-making process
and should be encouraged to do so, so I do think the Bill is flexible
enough and recognises that.
Q158 Lord Rix: Good.
Mr Broach: There is a second point
there perhaps as well which was, as was mentioned by the witness
from Enable, it should be possible for people with moderate learning
disabilities to make powers of attorney and we must not forget
that those powers could also apply to someone who has a disability
and someone to represent him, but has capacity to endow that power
to them, so in that situation of ageing and potentially coming
on to dementia, they could make a power of attorney as any of
Q159 Baroness Knight of Collingtree:
Many years ago when I was a local councillor, I called on a lady
whose condition worried me greatly. She was dirty, her house was
filthy, her clothes had not been washed, I do not think she had
had a bath in ages and, as far as I could see, she was not feeding
herself properly. I finally, after a lot of effort, got her into
a local hospital which she strongly objected to going to at all.
I went to see her in it and there she was in a nice, clean bed,
looking lovely and clean, but she died within a week. I have always
been worried about what her best interests were in that case because
I am horrified to say so, but I think her best interests were
to be in her own filthy home and I still do not know, my Lord
Chairman, whether I was right or wrong and I believe that I was
wrong. What do you say?
Mr Broach: I think that is a very
telling example, but I think there is a step before that perhaps
which is that if this Bill becomes law, you would not have been
able to take the lady into hospital unless you could demonstrate
that she was not able to make that decision for herself. It is
quite possible that although she was living in circumstances that
were not ideal, she was able to choose to live in those circumstances
and, therefore, she would not fall under an inability to make
decisions as set out in clause 2.