Examination of Witnesses (Questions 100-119)
MR CLIVE
EVERS, MR
SIMON FOSTER,
MR ROGER
GOSS, DR
ANDREW MCCULLOCH,
MS PAULINE
THOMPSON AND
MS KATHRYN
WILLMINGTON
16 SEPTEMBER 2003
Q100 Baroness Barker: Could I probe
a little more your exception to the phrase "reasonable belief"?
I agree that it is a phrase which can be interpreted in two ways.
One is an excuse but one is a requirement to demonstrate the basis
upon which somebody believes something to be in somebody's best
interest. Why do you take a negative view of that phrase?
Ms Willmington: Because of the
first interpretation and the concern that it would be used and
we are concerned that people would interpret it in a way in which
they could justify actions. It gives them more ability to flexibly
interpret it. The problem is that capacity is only ever a question
of judgment and we were concerned that because it is such a difficult
thing to measure it is always a question of subjective judgment
and we were concerned that, by leaving it open that way, it gave
people the opportunity to interpret it very flexibly.
The Committee suspended for a division.
Q101 Baroness Fookes: You advise
that the phrase that a person reasonably believes that a person
lacks capacity should be removed from the Bill. What protection
would there then be for somebody acting in the best interest,
say, in an accident and emergency department or some other immediate
emergency?
Ms Willmington: We thought about
that issue and our feeling is that whoever was acting in that
situation, if they were challenged, we would want them to be able
to show what steps they took to ascertain the person's capacity,
opinions, views, best personal interest etc., given the bounds
of what would be reasonable to expect in that situation and also
the necessity and emergency of that situation so there would be
protection for that person in that situation. We would not be
entirely opposed to the idea of it being amended. We are looking
with the eyes of the general public as to how they would interpret
that phrase, rather than it being in a person's own judgment,
if they have evidence of an objective judgment, for example. I
think we are completely aware that in situations of emergency
and necessity people are going to have to be able to act. There
will always be that justification and reason because people have
to act sometimes very quickly.
Q102 Baroness Fookes: You will surely
need in that case to present us with some form of wording because
I cannot quite see what would replace this, bearing in mind that
I think "reasonably" does offer protection and indeed
a restriction.
Mr Foster: The difficulty that
we have had with the phrase "reasonable belief" which
is something that lawyers are used to is that that phrase is not
necessarily so readily available to people who are not used to
deciphering the language. It is very tempting to say, "I
believe that I am a reasonable person and therefore it is a reasonable
thing to do." It may be a semantic point but we are thinking,
in terms of a form of words, about a belief based upon objective
evidence or something along those lines. It is tempting to say
this could be put into a code of practice. I think we are all
agreed that a code will be terribly important for the nuts and
bolts. I believe that we are saying this needs to be much clearer
on the face of the Bill, to bring out the fact that it is not
simply the subjective view of the individual; it is based upon
something objective.
Q103 Baroness Fookes: It will be
others, will it not, who will judge whether the individual was
acting reasonably?
Ms Willmington: We are concerned
that people do not use it to justify actions. We are trying to
make sure that people interpret this Bill correctly and they do
not use it to justify doing things that they should not.
Q104 Mr Burstow: I would like to
move to clause 6, the general authority, and the issues that arise
out of that. We have had in submissions reference to concerns
by self-advocacy groups who are worried that it is going to be
difficult for people to complain if they disagree with the choice
that has been made on their behalf under the general authority.
We were wondering if you could say a little more about what mechanisms
could be included on the face of the Bill that would enable people
to challenge decisions that have been made under the general authority.
Dr McCulloch: We welcome the principle
of the general authority but at the moment, as it is couched in
the Bill, it is something of a carte blanche to people, particularly
in situations where they are exercising it on a continuing basis,
rather than the emergency situation we have just been discussing.
We would suggest that there are a number of measures that could
be taken to ensure that the individuals' wishes are given more
weight, so that the individual has more opportunity to challenge
that authority if they feel they need to. One of them would be
to have some sort of competent authority to which a person could
go, or to which a concerned person could go to trigger an assessment.
It might be appropriate for that authority to be a social services
authority, but that is a matter for discussion. It is also important
that the mechanisms set within this Bill are embedded within the
real care processes that exist out there at the moment, processes
like the care programme approach, the care planning, multidisciplinary
team meetings and the like. Patient records, whether they are
written or electronic, should be used to enable these processes
to be kept track of. There are a couple of other mechanisms which
would be extremely useful. One is that we are advocating the use
of advance statements and that would enable someone to give a
clearer, positive expression of a particular wish that could be
taken account of. We are also particularly keen on the development
of advocacy services. They would be very relevant in this particular
situation, where someone feels that perhaps the general authority
has not been exercised properly. They may not even have the words
to express that in a bureaucratic or legalistic way. If they have
an understanding lay advocate that they can turn to, that person
can help them to access either the statutory mechanisms or the
mechanisms within the NHS or local authorities to raise that issue
and ask for an assessment or trigger some sort of complaints mechanism.
It is about thinking through what sort of processes are needed
to support the individual in the real world. I do not think we
can have a general assessment of absolutely everybody by a local
authority. The numbers are just too big. We have to think through
what a realistic mechanism might be.
Ms Willmington: Our vision would
be one in which the general authority was placed within the existing
mechanisms described so it would be discussed and reviewed regularly.
The important thing about that is it is not left to the closed
relationship between the carer and the individual; it is discussed
as part of a multidisciplinary team meeting. People discuss their
feelings about whether it is appropriate and whether they think
it is being used appropriately. Obviously it is not going to be
relevant for everybody because not every single person who has
capacity problems is part of the single assessment process. Unfortunately,
we do not have the answer to that but we feel it is one way of
trying to embed it in the existing mechanisms.
Q105 Mr Burstow: Picking up on the
point about this being a question of real processes in the real
world, one aspect of that might be the current no secrets guidance
from the Department of Health. Would you be recommending that
that would need to be redrafted and, as it stands, in terms of
its implementation, does it provide an adequate framework in which
the real world processes can be relied upon to pick up this sort
of abuse?
Ms Willmington: There needs to
be linkage specifically with the no secrets. One of the things
we suggested was a duty upon local authorities to monitor general
authorities. That would be a very easy way of linking the two
things.
Ms Thompson: It is a financial
point but it is an important point that we have a large number
of people in care homes who, because of an accident of having
more than £19,500, are funding their own care although they
might lack mental capacity. On the whole, the local authority
is very loath to make the arrangements for them. Therefore they
do not come under care management and the Bill might help to strengthen
this, if one did have that sort of linkage. There should be a
duty on local authorities to keep a weather eye on some of these
people who are in care homes. I understand through the National
Care Standards Commission that there is an issue here. We have
a large number of people who might lack mental capacity but, because
the receiver has made the care arrangements with the home, they
are no longer under local authority care management because they
just happen to have more than £19,500.
Q106 Baroness Fookes: I am still
worried about those who are not living in care homes or any sort
of residential institution. What about the person in a private
home whose only contact perhaps is with a carer with the general
authority with whom they disagree or want to make a complaint
about? How on earth do they get to any outside body, including
an advocate?
Ms Willmington: That is when it
comes down to public education. I think it is important that those
mechanisms exist. I am a very strong advocate for advocacy, particularly
for that scenario. In a perfect world we would be able to reach
every single person, but we are living in the real world and all
we can say is that it is important to have as many mechanisms
as possible to try and catch as many people as possible.
Q107 Baroness Fookes: Supposing you
had a concerned neighbour who was not a carer but who was worried
about what was going on next door. How would he or she tap into
the system?
Mr Evers: There are systems at
the moment to do that through the no secrets guidance. Social
services have a clear responsibility for the protection of individuals
at home, particularly elderly people. Through that mechanism an
alert could be made through social services and the system would
pick up through the case review that we have already discussed.
Mr Foster: My sympathy is with
you in the way you phrase the question. I can only speak from
my perspective but we are terribly concerned about those people
who have lost capacity and have regained it. They are outraged
at what has been done supposedly on their behalf. I do not wish
to speak for the Alliance but Mind would be very pleased to see
ultimately some sort of resource to a court, where appropriate.
How that would work in such a way that would balance the legal
flexibility and freedom of the carers to make proper decisions
while not exceeding their brief is an enormously difficult matter
and one that we would be happy to give a view on at some later
stage, if appropriate.
Q108 Mrs Humble: Returning to your
comment about any system being placed in the real world, one reality
now is that many especially older people, people with disabilities,
have direct payments and employ their own carers directly. People
with their own resources have been able to do that for many years.
Given that the relationship of the carer to the individual being
cared for is one of employer and employee, how do you see that
fitting into these proposals? Do you have any comments on that
situation?
Ms Willmington: One of my understandings
is that somebody who at the moment experiences direct payments
has to have full capacity. What could happen is that a carer or
somebody else in the family could go through the direct payments
process on their behalf. My sense is that that probably would
not be a direct problem in terms of the Bill. If somebody who
lacked capacity did have direct payments, there would probably
be at least one other significant person who would, I imagine,
have one of the mechanisms within this Bill that they would be
acting under.
Q109 Mrs Humble: That would also
cover somebody who might have capacity when they started in the
system but who may lose capacity later and they could then enter
into arrangements that are elsewhere in this Bill?
Ms Willmington: The reality with
direct payments is that although social services are not directly
providing the service, they still have a duty to review. At some
point they would be looking at the mechanisms within the Bill.
Ms Thompson: You have to have
the capacity to manage direct payments yourself or with help.
Social services are still responsible for the care that that person
gets and because they are making payments for that person they
have to make sure they are being spent giving them the care they
need.
Q110 Baroness Knight of Collingtree:
Ms Willmington said something a short while ago which I thought
displayed a very touching faith in the ability of local authorities.
She said that local authorities could be made to oversee the decisions,
as it were. I do not know whether I am getting cynical but in
my experience in recent years it has been increasingly difficult
for the local authorities to deal competently with all the care
problems they have with children and certainly with elderly people
in their areas. I cannot quite see how it is going to be feasible
to put another load on them and how would you think they would
be able to cope if they had one?
Ms Willmington: They will probably
give evidence on their own behalf. My belief is that they are
dealing with the problems that the lack of this Bill causes. From
their point of view, they would probably be very relieved that
for the first time there are mechanisms they can use to help them
do their jobs professionally. I would hope that they would positively
welcome this as a way to help them ease their workload in a very
positive way.
Ms Thompson: Local authorities
already have the lead on No Secrets, so they should have the mechanisms
set up. We would like to see more clearly how they are working.
Q111 Baroness Knight of Collingtree:
There is nothing else you would feel that they would have to have
at their fingertips in order for them to take on these extra duties?
Mr Evers: They would certainly
need to have a clear understanding of the mechanism of this Bill.
There is a significant public and professional education job to
do on how this will work and we may come to that later on, but
that is crucial.
Q112 Lord Rix: This question really
should be addressed to the witnesses tomorrow but people with
learning disability and self-advocate groups are very suspicious
of the professionals representing them, the parents representing
them, the carers representing them and this Bill in particular.
Does the same apply to self-advocates with mental illness, say?
Dr McCulloch: I think it does.
I fear that that is partly due to the context of this Bill, coming
as it does after the proposals on mental health which have been
greeted with almost universal dismay by patients, users, professionals
and voluntary organisations. That is rather an unfortunate context,
where there has been an opportunity to debate it in detail and
where service users who are working with the Mental Health Foundation,
some of whom are particularly interested in the issue of advance
statements, see this Bill as an opportunity to enhance their rights
and enhance the ability for self-representation. Some mention
of advocacy on the face of the Bill and a commitment of resources
by government for advocacy would go a massive way to reassure
service users that government is serious about enhancing people's
rights, rather than taking rights away. I think the door is very
much more open on the Incapacity Bill than it is on the Mental
Health Bill. There is a need to put some clear blue water between
what is happening here and a debate on mental health. Support
for advocacy would be a very strong way to do that. I do not know
if that makes any sense.
Q113 Lord Rix: Absolutely. What are
the chances, do you think, of us increasing the availability of
advocacy or self-advocacy?
Ms Willmington: It is something
that I would like to see happen. Everybody is campaigning for
it. I do not think there is a need for this to be separate from
advocacy generally. Obviously people will need special training
but there is not a need for a specialist advocacy service. If
possible, we would like to see local authorities having a duty
to provide an independent advocacy service as a right. Not all
local authorities would have to start from scratch with that.
Some of them would be able to use existing advocacy services.
It is not as huge as some people perceive. You may think I am
going back to semantics again but another thing is the very title
of the Bill. We think people would feel much more positively about
it if it was the Mental Capacity Bill, because that seems to reflect
the principle of supporting decisions, rather than the Mental
Incapacity Bill, which seems to be more about presuming incapacity.
Q114 Chairman: Should local authorities
be provided with specific powers to investigate allegations of
abuse and to provide protection for vulnerable people, which I
believe was originally suggested in the Law Commission's report?
Mr Foster: Yes.
Q115 Mr Burstow: I wanted to pick
up on the point about some of the ways in which the Bill talks
about people who lack capacity and some of the assumptions. Could
you develop a little the point made in the MDA submission about,
rather than assuming that the general authority is triggered,
that it is just there and available to be used, that instead it
should be triggered in some way? Can you explain to us how you
would envisage it being triggered and what the mechanism would
be to enable that to happen? Are there any other restrictions
that you feel should be placed on the general authority?
Ms Willmington: We feel the triggering
should be part of a case conference or review discussion. Rather
than one person making that decision, it is recorded in a multidisciplinary
way and that gives the opportunity for people to challenge it
and to be aware that it is happening. We feel quite strongly that
certain decisions are not appropriate to be made under the general
authority, really serious, life changing decisions. There are
not sufficient safeguards within this. One decision can potentially
change somebody's life. We felt decisions about where you live,
about significant changes to your care, financial decisions of
any magnitude should be excluded from the general authority. Carers
and family friends should not be allowed to consent to medical
treatment. Doctors should be able to do that but with additional
safeguards. If they are consenting to medical treatment, it should
be part of a clinical decision and they should have a duty to
consult families and friends. If they cannot get consent doing
that, they should have recourse to go for a second medical opinion
and, if not, there should be a case for protection.
Q116 Mr Burstow: In the scenario
you have just described, some might be concerned that one of the
consequences is that in situations of urgency and emergency decisions
do not get taken at the speed necessary to save life.
Ms Willmington: I am very pleased
that you have brought up that point. I meant to add that we felt
there would be a clause so that in emergencies people could act
and they would not need to go through that process. Obviously
there would have to be a balance between the emergency of the
situation and whether that would be appropriate.
Mr Foster: What I am picking up
is that the honourable members of the Committee are as concerned
about the general authority as we are. On the one hand, we think
it is a very valuable thing. Frankly, people have been making
decisions on behalf of somebody without capacity without any legal
framework or justification going back as far as whenever. At least
it is regularised and people should know what the limits are.
On the other hand, it is enormously difficult to regulate and
preserve the flexibility that is necessary. I think the questions
that have been raised are very serious and very important and
valuable. As I think you were suggesting, an awful lot of people
are incapacitated. A decision needs to be taken rather quickly:
here is somebody who is not currently in contact with the authorities
of whatever sort and it cannot reasonably be left. It is highly
desirable that it should be triggered by a conference, wherever
possible. Then it can be looked at in a regularised way, rather
than letting somebody do their own thing.
Q117 Mr Burstow: With regard to workload
and the capacity of the authorities to take this on, in terms
of case conferences, you are presumably describing an additional
task, because there will be many cases where decisions have to
be made under the general authority that would not have ever come
to a case conference under current arrangements. Do you really
think there is the additional capacity? I know from my own constituency
mail bag that case conferences get cancelled or never quite happen
or not everyone is there, but the decision can take place through
such a forum.
Ms Willmington: If this is one
way of necessitating case conferences happening, it is another
inadvertent benefit of the Bill. The alternative is that people
just have these decisions made for them. They have no opportunity
to challenge them or discuss them. It is very much in closed situations
rather than in these multidisciplinary ways, where you get other
people prepared to speak or challenge them. That is a very positive
thing.
Q118 Lord Pearson of Rannoch: When
you envisage these conferences with professionals and so on, they
are speaking on behalf of the intellectually disabled and people
with severe learning disabilities and not so much on behalf of
the mental illness group or elderly people who become mentally
incapacitated. Where do you see the wishes of the family in all
this, particularly the family carers who may have been looking
after some of these people for a very long time and who just may
know them better than the whole case conference put together?
Where do you see the influence?
Ms Willmington: It is central.
That is one of our reasons for having a case conference, so that
it can involve anybody who has something to contribute and so
that decisions are made which do include those sorts of discussions.
Mr Foster: This goes back to the
earlier question about where is the focus and the best interest
and indeed is it on the individual.
Q119 Lord Rix: Surely parents and
carers are generally included in all case conferences?
Ms Willmington: Clive is nodding
his head here!
Mr Evers: Shaking it!
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