Examination of Witnesses (Questions 500
- 505)
THURSDAY 3 APRIL 2008
Ann Keen, Ms Triona Norman, Mr Peter Jones and Mrs
Elisabeth Buggins
Q500 Baroness Neuberger: Minister,
I have to declare an interest which has always struck me as a
rather odd one: my brother-in-law is involved in transplantation,
particularly kidneys and livers, and I would really prefer you
to know that. My Lord Chairman has already said that we have heard
very different evidence from people about this question of presumed
consent, and at the moment public expectation seems to have been
raised, particularly by some very prominent individuals and organisations,
that moving to a system of presumed consent would increase organ
donation rates. You have already said that we have to have that
debate—you have already touched on some of this—but
the specific questions to which we want to get answers from you
are about the extent to which you think that presumed consent
might raise alarm amongst some groups, because they really might
be fearful that their organs are going to be taken and that might
reduce willing consent, willing donation. Also, were we to go
to this, how could a legal basis be introduced and would this
require a new Act? I realise that those two specific issues are
in a much broader debate that you have already highlighted.
Ann Keen: It is so very complex. All the people
I have heard who support presumed consent—of which I am
one—is because there is a keen desire for transplantation
to take place. That is the only platform from which people are
seen to come. How those rates and how that is influenced is what
the Taskforce is looking at. I am not privy to how that Taskforce
is developing at the moment because they are yet to report back
to us. Of course everybody knows Elisabeth is chairing that. I
do not want to say that I do not want to say any more but it is
very difficult to say any more because of that situation. The
media, as always, is either very helpful or not. In the debate
that is taking place—which you have had, of course, here
already with hybrid embryo research—everybody then becomes
very emotional and misguided in many instances as to what is taking
place. People will remember serious incidents, like Alder Hey.
If they do not remember, somebody will come up and remind them
as to what has happened there and panic people. That is why the
work the Taskforce is doing is so, so important, and responsible
people telling the truth as to what will happen. There have been
people who, to be honest, have not been honest as to what will
happen. The more that we can get patients as advocates of how
important this is the better, recognising and very much valuing
the fact that the families' wishes at the end will still be taken
fully into account.—and that nobody could sign up to the
fact that that would not happen. As I still feel a health professional
myself, there is no way that that could ever happen. Therefore,
we do need to bring in all of the experts but also all the lay
people as well to talk about how they feel in the best way we
can do this, and your report will help considerably and people
like yourselves will help us considerably to do this important
work.
Mrs Buggins: Shall I describe the approach we
are taking?
Q501 Baroness Neuberger: I
think that would be useful. Obviously you will look at al the
evidence we have, but the European experts we have talked to have
not really thought it would make a huge amount of difference.
They say do it or not, but they have not thought that that is
really what made the difference. You have touched on that with
the Spanish circumstances.
Mrs Buggins: Certainly Spain had presumed consent
for ten years—back in 1979 to 1989, I believe—and
it made no difference to their organ donation rate. That is interesting,
but that then set the context for all the other changes they brought
about in 1989, so we are looking at those two things in tandem
really and wondering what difference it would make in the UK context.
The approach we have taken, because it is so complex, is to set
up six expert working groups looking at the practical, clinical,
legal, ethical, cultural and communication aspects of different
consent regimes, to try to understand what the evidence currently
would tell us about whether presumed consent would be a better
option for the UK or not. I would like to say that we have been
put under no pressure to come up with a particular answer, so
this is an honest inquiry, and we are committed to producing the
report, based on the evidence that is currently available to us,
in the summer this year and also in that report to highlight further
questions to which we feel we need answers if we cannot come to
a definitive view at that point. Again we are indebted to a huge
number—I have a list here—of experts who are on those
six working groups and some fascinating debate is underway. They
are due to report back to the Taskforce by the end of May, so
that we may then formulate our report in the summer. I am not
really in a position to say what the conclusion is going to be
at the moment but we are addressing it very seriously and thoroughly
and it is a fascinating debate.
Q502 Baroness Neuberger: I
presume there would be some kind of changed needed for the Human
Tissue Act if you go down that path but at the moment you are
not going to discuss that. Is that right?
Mr Jones: I am Peter Jones, Branch Head of the
Human Tissue Branch at the Department of Health. We look after
the Human Tissue Act legislation. I am also providing secretariat
help to Elisabeth and the Taskforce work on presumed consent.
The extent to which the law would need to be changed depends on
how far we go—which is an obvious statement. The way the
law works at the moment is that where there was a decision made
by the deceased person one way or the other when they were alive,
that endures beyond death and has legal force. If that is not
the case, the Human Tissue Act requires you to get consent from
either someone nominated by the person when they were alive to
make those sorts of decisions for them or to go to someone in
what is called a qualifying relationship, which is usually family
member—it is ranked from spouse down to a friend of longstanding.
Anything that involved, in the absence of any decision one way
or the other by the deceased, making a presumption or an assumption,
in those circumstances would need a change in the primary legislation.
To what extent we would need change would depend on the Taskforce's
findings.
Baroness Neuberger: Thank you very much
indeed. Could I just say that it is great about Chris Rudge.
Q503 Lord Kirkwood of Kirkhope:
Minister, thank you for your appearance and your evidence. As
someone who has come new to this whole subject, you only need
to have been listening to our hearings for ten minutes to understand
that we are really dealing with public ignorance. My own view
has been completely transformed just by listening to what is being
done. Also I think we would acknowledge that the Government have
done a lot and that is well recognised. Public awareness is part
of the problem. I would like to put it to you that it is, and
get an assurance that the Government does understand the importance
of trying not to manipulate but to achieve informed consent in
the best way that we can. I would like an assurance about that.
I would like to know what other initiatives or projects the Government
may have in mind, bearing in mind I have a very clear recollection
of the mid 1990s, when AIDS became a problem, that the TV promotional
campaigns were very effective and, indeed, some of the smoking
campaigns more recently have been very effective. If Parliament
does believe in making progress in this area—and I believe
the evidence is that they do—can you really do that without
putting some effort and money inevitably into some of these publicity
campaigns that could get the informed public into a situation
where they can make decisions for themselves? Do you have a budget
within the EU Comprehensive Spending Review to help you do that?
The Taskforce, fully funded as it is, as Elisabeth Buggins was
right to point out—and that is welcome—does not have
an element for public awareness raising in terms of publicity
that I am aware of.
Ann Keen: This is a very important question.
Yes, we are funding the Taskforce for more public awareness. That
will take place.
Q504 Lord Kirkwood of Kirkhope:
Is that known?
Ann Keen: Yes.
Mrs Buggins: £4.5 million over the next
two years.
Ann Keen: National Health Service Blood and
Transplant and bodies like that—and I think our welcome
appointment today will make a huge difference—and newspaper
campaigns have been supportive. Last Saturday's Sun was
very helpful. I think the soaps are a good way in. Sport in particular.
We work very closely now with the Football Foundation in the Department
of Health. Rugby want to come in. All of the sports people can
help us. When we were talking this morning, Elisabeth came up
with the idea that we should make a film. It would be a very powerful
film. I do not want to steal her idea, but I think it would be.
Having seen the Diving Bell and the Butterfly in the last few
weeks and seen how powerful that media is, this would cross all
languages and cultures, and there is so much now that we are ready
to do and so many people ready to do it. I met Graham Bruchete
outside and he is going to give me more examples of his work when
the Committee is ended. He has received a heart and lung transplant
and is going around schools, and getting into schools is so important.
The Health Service, as we have said in previous answers, needs
education. Professions do. There is such a powerful media out
there: Casualty, Holby City, all of those, are powerful programmes
for getting messages across. But funding needs to be there too.
Q505 Lord Kirkwood of Kirkhope:
That is a helpful reassurance. The other point that struck me,
which I was completely ignorant about, is that even when people
are on the Organ Donor Register family members can resist. That
is a trickier problem, I guess, from a public awareness point
of view. Just to get people to sign up is perhaps simpler than
trying to get across to families that people have made a choice
and it is something that really ought to be respected. That is
an important part of the public awareness campaign as well I hope.
Mrs Buggins: What you have just said is so important.
One of the things that was really interesting, looking at the
data around the donation in this country, is that being on the
Organ Donor Register does not necessarily mean that you donate,
as you say, because family members are so important. But, also,
the way the NHS operates at the time of that person's death has
a big impact which is something that the Taskforce Report sought
to address. It is also interesting that people who are on the
register do not donate necessarily in proportion to the population.
Perhaps I can explain that a bit more clearly. People who are
on the Organ Donor Register tend to be people who are in the higher
socio-economic groups; I understand that the people who donate
tend to be in the lower socio-economic groups. Again we need research.
We do not understand why. There does seem to be some suggestion
that the degree of confidence that people have in their professional
carers at the time of death leads to their willingness or not
to donate. We do need to understand a great deal more about why
people donate and why they do not donate but a publicity campaign
is overdue.
Chairman: It illustrates the need for
research again. We are immensely grateful to you for coming to
talk to us—some of you, yet again. Minister we are very
grateful that you have given us the time. I suppose we have discovered
just how immensely complex a problem this is but I think the one
message we have taken is that, whatever else you do, if you do
not have the system in place to take the organ, and transplant
it at the time when someone is prepared to give it, then whatever
else you spend your money on will be lost. I suppose that is the
core message that has come across to us and of course it was a
central message in the Taskforce report. I suppose we would be
saying to you that we have to look at the EU proposals but as
far as the UK is concerned, the top priority will be to put your
system in place. This is what we have been told both by the people
we have heard from across Europe and from UK witnesses. We recognise
how distressing it is that so many people sit on waiting lists
for organ transplants and that relatives lose their family members.
We are very aware of how important all this is. We will do our
best with all the evidence we have received and we wish you well
in trying to make it all work for the UK. Thank you very much
indeed.
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