Examination of Witnesses (Questions 60
- 79)
THURSDAY 6 DECEMBER 2007
Sir Liam Donaldson and Ms Triona Norman
Q60 Lord Lea of Crondall:
If a law came in, would that totally close the gap between supply
and demand? On the face of it, there are thousands extra. Is there
something erroneous in that?
Sir Liam Donaldson: It would make a big difference.
We do not know really, I suppose, how many people are below the
surface who are just not being put forward at all for transplants.
The demand is suppressed by the fact that there are not the opportunities
for operations. For example, we do not know whether there are
elderly people who could benefit from an improved quality of life
from transplant who are not even being referred for surgery because
the referring doctors know there is no chance of them being treated.
Q61 Lord Lea of Crondall:
This is what I am getting at. There is a presumed gap.
Sir Liam Donaldson: Yes.
Q62 Lord Lea of Crondall:
There is a statistical straightforward gap.
Sir Liam Donaldson: Yes.
Q63 Lord Lea of Crondall:
It is in one of your documents that there are 1,000 kidneys, or
whatever it is.
Sir Liam Donaldson: Yes.
Q64 Lord Lea of Crondall:
The presumed gap, as somebody said, is in between what you do
not know and what you do not know you do not know.
Sir Liam Donaldson: Yes.
Q65 Chairman: That is an important
issue. It goes back to this priorities issue too, does it not?
Our priorities are set in relation to expectations.
Sir Liam Donaldson: Yes.
Q66 Baroness Young of Hornsey:
Good morning. You have already said something about the difficulties
in trying to gauge public opinion regarding presumed consent,
so I will not go over that again, but can you say something about
your assessment of general knowledge in relation to organ transplantation
and donation issues amongst the general public? Also, to what
extent do you feel the raising of public awareness about those
issues could be made much more effective? I am thinking particularly
amongst black and minority ethnic populations, where the discrepancy
between the number of people who need transplants and those who
are willing to give consent to it seems to be much bigger than
it is amongst the general population. I wonder if you could say
something about some of those issues, please.
Sir Liam Donaldson: I think a big factor is
that the media are not particularly interested. If you look at
other areas of health where people are dying for want of treatment,
the media make a lot of comment on it and criticism. There is
virtually nothing. When my report was published there was a flurry
of interest then, but if you look at most transplant stories they
are about babies who are waiting for heart operations and do not
have a donor. Those are tragic cases—and in many cases they
are resolved positively—but they are a very small minority
of the need. I cannot remember the last media report I saw on
the idea of a middle-aged person dying. Interestingly, having
produced my report there was a flurry of interest, and I was very
interested to listen to some of the phone-in programmes that followed
interviews which I gave, with patients who were on dialysis for
long periods of time talking about how restricted their life was
and how miserable it was. Those sorts of stories just do not get
out into the public at all. If the media did pay more attention
to this, I think there would be much, much more public pressure
for something to be done about the shortage of organs. I am told
that in some of the other European countries there is a lot more
education in schools about this. I do not have any hard and fast
evidence but talking to certainly one of the researchers who has
done some work on what happens in other European countries she
made the point that the general public level of understanding
is much higher, and I would guess that it is very, very low in
this country. It is always easy to say, "There should be
more education in schools" but then we have problems of a
crowded curriculum and so on and so forth, but I do think the
health component of the school curriculum could be looked at to
see whether this could be incorporated. Turning to the situation
of ethnic minority populations: you are right—and you will
be familiar with the statistics—about 25% or so of people
on the transplant waiting list are from black or ethnic minority
groups and 2% of donors are from those same groups. I would guess
there are some cultural barriers and distaste, possibly, for donating
organs. I think a different form of awareness and education would
be needed, tailored to the attitudes and beliefs of those communities,
if we are going to increase the donation rate from them.
Q67 Baroness Young of Hornsey:
You say that as though you are not sure. Is that because you personally
are not sure whether there is research? Has research been carried
out in that area?
Sir Liam Donaldson: I do not think there has
been particularly good research carried out yet in that area.
We can check on that and come back to you.
Ms Norman: It is something the Taskforce agreed
needed further work.
Q68 Baroness Young of Hornsey:
Is there any knowledge about whether that pattern is repeated
internationally, that, where there are significant ethnic minority
groups, there is this reluctance to come forward? Or is it something
that is peculiar to Britain? Or do you not know?
Ms Norman: I do not know. I am sorry. Across
Europe I do not know.
Sir Liam Donaldson: This is not directly related
to your question because it is a wider context, but when I was
producing the recommendations following Alder Hey we had several
meetings with the faith groups, because we expected big resistance
over trying to change the legislation, and there was really very
little strong feeling about it—the Jewish community being
the exception, I think, where there was a strongly held view.
Certainly many of the other faith and cultural groups were quite
keen on the idea of organs and tissues being used to help others,
but that was in relation to people who had had post-mortems. We
were not talking about transplants.
Q69 Lord Trefgarne: It is
a particular problem with some faith groups.
Sir Liam Donaldson: Yes.
Q70 Lord Trefgarne: Who have
not very readily responded to our requests for views on this matter.
Is there a difficulty with some faith groups? I think you have
referred to the Jewish faith.
Sir Liam Donaldson: Yes.
Q71 Lord Trefgarne: Is the
Muslim faith group content with all this?
Sir Liam Donaldson: Certainly when we spoke
to them in the earlier context they pointed to interpretations
of the Koran which were supportive of the idea of donation. But
then different Muslim scholars sometimes take different positions.
Certainly the representatives we spoke to were very positive about
it all.
Q72 Lord Trefgarne: Although
most of the faiths do not seem to have a difficulty, nonetheless
in some of these faiths they do not come forward.
Sir Liam Donaldson: Yes, which is why I think
we probably need more research into the attitudes and beliefs
and to see whether it is purely a lack of awareness or whether
there are some more fundamental objections.
Q73 Lord Lea of Crondall:
Is there not a paradox? You have a huge gap in supply and demand
and I wonder why there is not slightly more direct public service
advertising. When HIV/AIDS suddenly became a big thing, on a lamppost
in Farnham there was a big poster saying, "Don't die of ignorance"
and I remember one of my friends in the pub saying, "I didn't
know you could die of that" ha-ha, but you did go in for
direct advertising to fill the gap. Is the gap because people
are too lazy to do it a donor card, or, like me, they have not
got around to it? Is it because people are squeamish? It is strange.
If the public opinion polls are saying that we ought to move in
the direction of presumed consent, why is there such a big gap?
Or is it just that people do not realise there is a gap?
Sir Liam Donaldson: I think people probably
realise there is a gap because there are different recruitment
campaigns undertaken periodically. I think it is just that people
do not get around to it mainly.
Ms Norman: I would add: all of the above and
a certain degree of apathy.
Q74 Lord Lea of Crondall:
It is not easy to do. I do not know how to do it. What do I do?
Sir Liam Donaldson: You can just register on
the website of UK Transplant.
Q75 Lord Trefgarne: You can
still carry a card, can you?
Sir Liam Donaldson: Yes, you can.
Ms Norman: You can register at doctors' surgeries.
Q76 Chairman: The Committee
has demonstrated its ignorance I wonder when the last time was
that government had a really strong TV campaign, like the smoking
campaign or the drink driving campaign.
Ms Norman: We have tried to drip feed—which
is a way we think we can get the best message across. Rather than
a big, major campaign, we drip, drip, drip, to get the message
across that way. I think there is evidence that if there is big
media coverage, people will go to the website, they do register.
As Sir Liam said, when the report was published a lot of people
registered on the organ donation site.
Sir Liam Donaldson: Within 48 hours of my report,
about 30,000 people registered.
Q77 Chairman: Maybe that is
something we should be exploring.
Ms Norman: When Holby City covered a
transplant in their storyline about 18 months ago, if you remember,
there was quite a lot of interest then.
Chairman: We are demonstrating that it
is probably ignorance and not squeamishness that stops people
coming forward.
Q78 Lord Wade of Chorlton:
What views do you have about the need to make much more explicit
for potential organ donors the basis of defining the point after
death at which organs may be taken from them?
Sir Liam Donaldson: I am not sure there is a
problem of the public or the relatives of somebody who is dying
fearing that the organ may be taken before they are pronounced
brain dead. The greater problem really is an awareness amongst
the staff in the hospitals, both in the intensive care units and
in the accident and emergency departments, of the need to pursue
consent wherever possible.
Ms Norman: UK Transplant has done an audit of
every death in intensive care since 2003 and they have tracked
where we are losing potential donors. That audit is probably worth
having a look at and I can certainly provide it to the Committee.
Before they even get to being asked, we are losing. I think there
is an issue around working with the clinical staff but also with
the relatives.
Q79 Lord Wade of Chorlton:
There must be an understanding now in the medical profession as
to when you say somebody is dead. What is the basis of that? Is
it being brain dead or when your heart stops beating? I am not
a medical man, so I do not have a clue how you do this.
Sir Liam Donaldson: For somebody who is in a
coma, basically, in intensive care, there is a whole range of
criteria—and we can send you them—on how you define
brain death. For somebody who is admitted to an accident department
after a car crash and they are pronounced dead, it would be a
conventional medical examination to determine whether there were
any signs of life. That group is a more difficult group to get
a viable organ from because you have to move very, very quickly
to perfuse the organ and make sure it is viable. In the case of
somebody who is in a coma, when you pronounce them brain dead
the organ continues until the last minute to have its blood supply
and it is well perfused and it is a healthier organ to transplant.
| 
