Examination of Witnesses (Questions 160-179)|
17 SEPTEMBER 2003
Q160 Baroness Knight of Collingtree:
So the Bill would have protected her?
Mr Broach: I think the Bill would
have protected her right to make that decision for herself.
Q161 Stephen Hesford: I apologise
for missing yesterday's session, so there is perhaps an absence
of knowledge on my part, but I think I am picking up the drift.
What I am worried about so far is that there seems to be an element
of confusion in what is being said which I am not entirely happy
is helpful to the Committee. You asked about the checklist, but
I am not sure that has been addressed at all, the idea of whether
the checklist is sufficient. The other is that there seems to
be a confusion between assessing whether somebody has incapacity
and then, if somebody has incapacity, what then you can do about
it. The decision as to whether someone has incapacity or is incapacitated
in some way to bring them within the Bill is a different stage
from addressing best interests and so far it seems to be rolled
Mr Broach: Perhaps we should try
to untangle it.
Q162 Stephen Hesford: Yes, for me
Mr Kramer: I will deal with the
first point because that is easy and it will give us time to think
about the second. We do think that the best interests checklist
is important. What is not clear in the Bill is the priority in
terms of the checklist, what should be given priority in terms
of that checklist, and the starting point is to support the person
to make their decisions and make sure they have all the information
to do so, so that is not in there. The other point that is not
in there is the concern about supporting people who may have severe
learning disabilities to make decisions who may be able to indicate
their wishes through changes in behaviour and I think that is
an important issue that is not included in the Bill, that someone
may demonstrate pain and distress that they do not want to do
something and that may be exhibited in changes in behaviour. If
we are about supporting people with profound learning disabilities
to make decisions, I think that is a very important factor that
has to be taken into account. The third one is about the need
to take into account issues around cultural values as well. If
we are respecting people's diversity, then I think we also need
to respect their whole makeup and their cultural factors which
may influence their decision-making.
Q163 Stephen Hesford: I still think
that that has the confusion of putting the two things together.
Are you saying that clauses 1 and 2 should be amended in some
way in seeking to address the issue of if somebody suffers from
Mr Broach: No. Our argument is
that, as with the Scottish Act, there are principles, but essentially
clauses 2 and 4 together form the principles of this Bill, but
actually for us clause 3, presumption against the lack of capacity,
is the fundamental principle, so the way it works for us is that
we presume that a person has capacity, we then assess that capacity
and we allow them to make their own decisions and we ensure that
they are supported to make decisions and if they still cannot
make decisions, then the checklist in clause 4 would apply.
Mr Kramer: But the prominence
given to best interests has led to confusion about whether it
is going to restrict people's right to make decisions and that
is why the presumption has to come first and move clause 3 to
the start of the Bill.
Q164 Chairman: Is the problem that
this Bill entirely has a functional approach, whereas the Scottish
Bill starts off with the principles and then you build the functional
approach on to that? Is that your concern?
Mr Kramer: Yes, if you were to
ask us what is the overriding principle the equivalent to the
benefit for the individual, we would say the right to make decisions
that they are capable of making and to be supported in doing so
and that is lost in the Bill because if you look at it, someone
could go to clause 4 and ignore clauses 2 and 3.
Q165 Baroness McIntosh of Hudnall:
Would that lead you to suggest that the title of the Bill is wrong?
Mr Broach: Yes.
Q166 Baroness McIntosh of Hudnall:
And what would you suggest it should be?
Mr Broach: We have suggested that
it is amended to "Mental Capacity".
The Committee suspended for a division.
Q167 Mr Burstow: It has partly been
picked up already, this question of the insertion of the word
"personal" to "best interests" as the test
and I think partly Stephen's question helped to unpick this a
bit, that by putting the presumption of capacity at the beginning
of our thinking does help clarify it in that "best interests"
does not apply if you have got capacity. What I am still not clear
about is if the tests around capacity apply and a person is found
to lack specific capacity to take a particular decision or general
capacity and then "best interests" applies, how materially
for someone looking at the legislation and looking at any codes
that are produced as a result of it would act differently if the
word "personal" was there? What would be the specific
things that would lead them to act differently? Is there any previous
legislation where this has been used and, as a consequence, has
a different effect? It really would be very helpful if you could
give us some sort of sense of how this is not just semantics and
is actually substance.
Mr Kramer: I will try to give
an example to answer the first point. If somebody with a learning
disability needs medical treatment and he lacks capacity to consent
to that treatment, a decision on the medical treatment would be
taken on the best interests. Although that person may not be able
to understand the nature of the operation or the consequences,
you may be able to bring best interest factors that may bear on
the medical treatment decision, for example, an individual who
has a profound distrust and fear of needles and that fear and
distrust of needles could be reflected in the medical decision-making
process so that an alternative way of carrying out the treatment
could be found. Actually the best interests about encouraging
people to participate and taking account of past and present wishes
could have a direct bearing on that particular medical treatment
that is being proposed. Does that help at all?
Q168 Mr Burstow: No, it makes me
more puzzled because in none of that did you use the word "personal"
and, therefore, I want to ascertain how applying the word "personal"
it would be different because the clause, clause 4, does, in (2)(c)(i),
specifically talk about what you have just said, wishes and feelings,
so that is there in the context of best interests, so can you
help me one step further to understand how adding the word "personal"
will make that list of things be read differently?
Mr Kramer: Because I think it
would change the approach and the attitude to best interests because
people would think in terms of the decision relevant to that individual,
"What do we have to think about?" rather than thinking
what is in the interests. If that person needs treatment, someone
could say, "Well, that person lacks the capacity, so it is
in their best interests to have treatment", and yet if someone
who is involved with that person lacks the capacity to consent,
how can we take account of past and present wishes. Actually if
the terminology is changed and it says "best personal interests",
it may think about the nature of the operation, thinking about
the individual and having a much more person-centred approach
to the treatment.
Q169 Mr Burstow: But is this not
so much a question of the wording on the face of the Bill, but
actually the codes of practice and the training that underpins
Mr Broach: Yes, it is, and that
is absolutely crucial. However, we would like to see, as the Alliance,
that it refers as many times as possible that it is about the
person that is in the centre of the decision, so in that sense
alone we think it is significant. It is also incidentally a recommendation
made by the Law Society in terms of the technical question around
other legislation which may include "best personal interests"
which may be addressed to them. In terms of the checklist itself,
there are, I think, some possible amendments and improvements
that could be made. In 4(2)(b) the best interests test includes
"the need to permit and encourage him to participate, or
to improve his ability to participate", and that could be
defined and unpicked further, I think. One of the things we would
add in there is advocacy which I am sure we will talk about in
more detail later on. We would argue from the very beginning there
that improving a person's ability to participate in decisions
may well involve an advocate actually working with them to support
Mr Kramer: Just in terms of personal
interests, if it said "personal interests", people would
be more minded to think about whether that person has enough information
to make a decision and whether people have the time and support
to make a decision. Can we not move away from this feeling that
someone cannot make a decision because they have not been able
to do that in the past? It would mean less focus on whether a
decision is reasonable in the interests of somebody else, so I
think it is not just a question of terminology, but I think it
can make a big difference in terms of how the Bill is applied.
Q170 Mr Burstow: The answers you
have given seem to mix tests of capacity with tests of best interest
and we need to make sure in the evidence that we are getting and
the answers we are getting that we are picking those two apart
so that we take the sequence in which they are being dealt with.
It seems that you are conflating the two. Does that make sense?
That is what it seems to me at the moment.
Mr Broach: That is a fair criticism
and I think the fundamental point around "personal best interests"
is that best interests could be looked at in a number of different
ways and we want them to be looked at in the interests of the
person in question and that is the reason we have made that recommendation.
Q171 Mr Bercow: I must say, I do
not actually think we are greatly advanced or having much joy
listening to the evidence you have given, but Paul Burstow beat
me to it and posed the question which was very much in my mind.
Presumably your problem with the concept is clear enough and,
therefore, you want to make it in practice specific rather than
unspecific, personal rather than amorphous, yet for all that,
if you will forgive me saying so and this is intended to be constructive,
it seems to me that the information does more to obscure than
it does to clarify. In fact if we were to be persuaded that "personal"
was not just a sort of emotional cushion, but something rather
specific and practical, I think we would need more and better
examples than what seem to me is the rather vague notion you have
just advanced. I am sorry if I am being incredibly unfair or if
colleagues think I am being very obtuse, but for me as a lay person
it does not really advance matters at all. It is an additional
word, but not an additional reason.
Mr Broach: There is an example,
another one which may help. People with autism, many of them experience
sensory oversensitivity. They are very, very sensitive to touch
and may feel things far more sensitively than others do and, therefore,
their treatment should take into account that sensory sensitivity.
It is a similar example, I suppose, to Richard's around the fear
of needles, but perhaps a more general one for my client group.
Therefore, in a general best interests sense it may be appropriate
to treat them in a certain way, but you would want to take account
of their personal best interests and look at their personal circumstances
which included this sensory oversensitivity and, therefore, a
certain other type of treatment may need to be found.
Q172 Lord Pearson of Rannoch: I wonder
if I could take you back to that category of people Mr Kramer
referred to earlier with severe learning disabilities or mental
health and, therefore, intellectual disability or impairment or
handicap, whatever you want to call it. I think you indicated
that changes in behaviour might indicate what people want. Of
course that may be or may not be and it would depend on the individual,
I suppose, but if we take clause 4(2)(d)(ii), it says, "In
deciding for the purposes of this Act what is in a person's best
interests, regard must be had to (d) if it is practicable and
appropriate to consult them, the views of (ii) any person engaged
in caring for him or interested in his welfare". In those
circumstances, where do you put the family in the pecking order,
as it were, if there were to be a disagreement between family
members who cared for him and thought they knew him best and the
professionals? Do you have a view on, all things being equal,
whether the family's views should come first or the professionals'?
Ms Morgan: Clearly if someone
has profound learning disabilities, the family are usually their
strongest advocate and the people who have their interests at
heart, usually, and, therefore, they need to have a strong say.
Also in our work we have looked at the needs of people with profound
learning disabilities and their wishes can be also ascertained
alongside people who know them well and also by finding ways of
communicating through objects of reference, using a coat to say,
"We're going out", that sort of thing, and using pictures,
sometimes using sign language depending on the people themselves.
What I think would be also important and I feel we will be talking
again about later is that sometimes there is also a need for advocacy
to balance out the interests of the person and the family if there
is disagreement and that it is very, very often the family where
someone has a profound learning disability who would be likely
to be their focus.
Mr Broach: In terms of how the
Bill would work in a situation where carers and professionals
were in dispute, all of the organisations in the Making Decisions
Alliance or the vast majority of these represent both carers and
people with impaired capacity and one of our fundamental principles
was that carers should have the right to be consulted in the decisions
taken on behalf of the person they cared for.
Q173 Lord Pearson of Rannoch: That
is family carers?
Mr Broach: That is right. If there
was to be a dispute, then this Bill provides mechanisms, such
as the court of protection, to resolve those disputes and it would
be impossible to say that professionals or family carers should
take the lead unless one of them has formal powers set out in
the Bill such as the powers of a deputy or an attorney.
Q174 Baroness Fookes: I was unconvinced
yesterday and I remain unconvinced today that the word "personal"
adds anything whatsoever to the terms of the Bill, but I understand
what lies behind it and your concern that the best interests should
be secured, but it seems to me that your concern about the needles
is fully dealt with under 4(1) and (2)(c), that past and present
wishes and feelings and other factors which should be considered
totally covers the question of how you dealt with a great fear
of needles. Would you in fact be happier if there were a code
of conduct or codes of practice attached to this which would perhaps
expand on what we have under clause 4, the best interests, and,
if so, would you be interested, willing or able to give some kind
of outline, not right now, but have you given any thought to codes
of conduct in any detail?
Mr Broach: Yes, we have. In terms
of the detail of their contents, our focus has primarily been
on the Bill to date and codes of conduct around best interests
would be absolutely essential, and before that, as was set out
in answer to Stephen Hesford's question, a code of conduct and
assessment of how clause 2 would be put into practice would be
very necessary. I think that certainly some of the subclauses
around best interests do focus attention again on the individual.
If I could just pick up that point about past and present wishes
and feelings, we could go back again to the evidence given yesterday
about the need for advance statements to have significant priority
in the Bill because at the moment they are just grouped in amongst
other potential expressions of wishes and feelings and actually
if they were in there, then I think the focus on the person may
be delivered through that route more effectively perhaps than
just the addition of a word to the test.
Q175 Baroness Barker: I too for the
last couple of days, because of this word "personal",
have been confused, although I understand what you are trying
to get at. However, I have a deep fear and I would like your reaction
to it, which is whether it is conceivable that the inclusion of
the word "personal" sets out on the face of the Bill
an almost inevitable conflict between the individual and those
around him. I listened very carefully to what Ms Morgan had to
say, that people who live with people all the time who have limited
capacity often are best placed to understand their function over
a long period of time, but can you convince me that by trying
to do well for these people, we are not setting up that conflict?
Mr Kramer: I do take your point
that there is a difference of opinion in terms of the terminology
and the impact it can make. I think just building on the previous
question, what seems to be inseparable from the Bill is a change
in attitude and approach which may need to accompany it. Yes,
in terms of the term "best interests" it is in the Bill
to take into account past and present wishes and other factors
which would be relevant, but that is assuming that the Bill would
be applied in practice and that will demand a change in terms
of culture and attitudes. I think that is why my last attempt
to make the case for "personal" is that it will exercise
the minds of people and help create an atmosphere to change the
culture. We have agreed, I think, that we need to rethink it because
we accept the points which have been raised by the Committee today.
Ms Morgan: If I can just add one
more thing about "personal", the White Paper Valuing
People of 2001, a core part of it is person-centred planning,
so for people with learning disabilities a personal-centred approach
is really there in the culture and being developed in the culture
and for that reason I think it is consistent. I know it is not
legislation, but it is a policy paper and for this particular
group I think it is consistent with what is said in that White
Q176 Baroness Barker: I would like
to know, in your opinion, if the word "personal" did
not appear whether the whole best interests approach should be
abandoned in favour of the principle approach which was taken
in Scotland? That is a big question, I know.
Mr Broach: It is, but could I
just attempt to answer your last question one more time. Conflict
is the point, conflict between interests, and how that fits in
with best interests. That is precisely why we think that the word
"personal" needs to be added because if there is a conflict,
and in reality there are conflicts between informed people, the
professionals and the person themselves, then it is the person's
best interests which should be at heart, so that is our final
plea perhaps for the word "personal" to be included.
Q177 Chairman: Are you saying that
if in fact the principles in the Bill and the codes of practice
were extremely well drafted, that would meet your concerns?
Mr Broach: It is possible. We
would want to think about whether essentially we prefer the Scottish
approach or the English approach, bearing in mind this discussion.
We will write to you on that.
Q178 Mr Burstow: Moving on to clause
6 of the Bill and the general authority, we took some evidence
from the Alliance yesterday on this, but it would be useful perhaps
just to build on that and seek some further clarification. We
have had representations from some self-advocacy groups like People
First and they have told us that they see the Bill as meaning
that people with disabilities would be bossed about and controlled
about even more than they are already and they go on to express
concern about the fact that there appear to be no mechanisms for
complaining about or challenging decisions which have been made
on their behalf. In evidence we had last week from the Scottish
Law Society, we were told that this would be used retrospectively
as a justification for what has occurred. What do you think could
be done to meet those concerns from People First and the concerns
from the Scottish Law Society about the introduction of this wholly
new idea of a general authority?
Mr Kramer: The starting point
in terms of People First's concerns is that I think there was
some concern that the accessible version of the Bill in fact did
not explain the term "general authority" which was an
issue which has led to a lot of concern amongst self-advocacy
groups, and they feel very suspicious about why an accessible
version of the term "general authority" was not referred
to, so that is one concern. The other concern is about being clear
what the general authority is for and the parameters for that
and I know that the people from the Scottish Law Society were
concerned about the general authority per se and I think
it would be useful to explore the case for the general authority
and then perhaps to look at the safeguards which may be needed.
Their concerns about people not having to justify actions at the
time a decision is made, but only when it is challenged, we do
share those concerns and that is why we think there need to be
additional safeguards. Would it be helpful if I take you through
the argument about why the general authority?
Q179 Mr Burstow: It perhaps would
be helpful if you could say something about what the safeguards
should be to allay that concern.
Mr Kramer: In terms of the need
for a general authority to act, I think many organisations representing
carers have been concerned that they are unsure about how to make
decisions which represent the views of people who lack capacity
and they want clarity about what day-to-day decisions they can
make without going to the courts for formal authorisation, so
the general authority is positive in the sense that it will dispel
the doubts and confusion from carers about what they can do. What
it does not do is really set out what the limits are to the general
authority at all and that, I think, is the major concern that
ties in with People First and the Scottish Law Society. I think
the point is that when the idea for the general authority was
set out in the Law Commission Report Who Decides, it was
felt that it would actually give recognition to day-to-day decisions
and that they would be distinguished from more formal arrangements
for authorising decision-making and that some decisions which
would be reserved to the courts and others taken out of the court
system altogether and that this Bill does not really clearly set
out the limits of a decision that can be taken under the general
authority. Therefore, in terms of the safeguards, I am slightly
reluctant to talk about terminology because of personal interests,
but I think it should say the "general authority to act reasonably"
is the starting point because that in itself sets out the safeguard
of the basis on which decisions should be taken, which is reasonably.
Yes, it does say that in the rest of the clauses of the Bill,
but I think it is very important that it says that in the terms
of describing the general authority and how it would work. Then
I think the scope of the general authority needs to be more clearly
defined in the Bill. Now, part of that can be dealt with in terms
of codes of practice and that might be very helpful in terms of
changing practice in terms of carers and involving people in decision-making.
Some other aspects are in terms of recording the general authority
and recording decisions so that a person who is making a decision
is able to justify the decision. That is particularly pertinent
for care staff where there are already mechanisms whereby people
can record decisions that they have made and, therefore, justify
their decision. Another way of doing it is thinking about how
can this Bill minimise opportunities for conflict and how can
it maximise opportunities to reach agreement, and the problem
is that the only way to challenge that general authority is to
go to the court of protection, so other safeguards, such as recording
decisions, looking at mediation and alternative dispute resolution,
they are factors that provide extra safeguards. I do not know,
Stephen, if you would like to add the specific restrictions that
you want to see.
Mr Broach: Again I need to set
this out in context. The general authority in this Bill attempts
to do two things. It attempts to provide the framework for the
day-to-day decisions that Richard has outlined. It also attempts
to give an emergency authority and many of the questions yesterday
focused on what would happen if the emergency authority was not
possible. I think it is very important that those two aspects
are dealt with separately because it may be impossible to do both
in the context of the general authority. In terms of day-to-day
decisions we want the focus to go very much back on to the sorts
of actions and decisions that are set out in the explanatory notes,
things like cooking someone breakfast, taking someone out for
the day, those sorts of general everyday decisions, and we thought
about it in terms of the significance of the decision and also
the length of time that you have to make it, so if the decision
is not that significant, it is reasonable to take it under the
general authority regardless of time. However, if you have a really
significant decision such as where someone lives, how they are
going to spend their days and indeed medical treatment, it is
not reasonable, in our view, for those decisions to be taken under
the general authority unless there is a pressing need for it to
be done so and that need is in the person's best interests, and
in those cases if a decision is taken under the general authority,
then the need to log them and record them so that the decision
can be challenged afterwards becomes even more paramount, so there
is a second set of circumstances which you may want to question