Examination of Witnesses (Questions 200
- 210)
THURSDAY 7 FEBRUARY 2008
Professor Gurch Randhawa, Dr Magi Sque and Dr Tracy
Long
Q200 Lord Kirkwood of Kirkhope:
Okay, that is a result. How do you do that? Let me give you an
example. We get the papers and this question is being asked of
us in a European context and we must not forget that. The kind
of thing we get is the Commission documents, advice to Parliament
and the rest, and let me just quote a sentence you might be interested
in. They say, "The most cost effective means of increasing
public awareness to donate seems to be improving the knowledge
of health professionals and the media about transplantation issues
because both positive and negative messages can affect the public's
willingness to donate." The European way of doing this is
getting the health professionals. Part of that is what you have
already been saying but it conflicts a little with Professor Randhawa's
important evidence that he gave in writing which really means
going down below that, getting into streets and communities and
working with networks. How do we pick our way through these different
models?
Professor Randhawa: I think this goes back to
the fundamental point that across Europe the demography of all
the European countries is rapidly changing and the way people
get their information now as a society is changing; we are all
using the internet far more often, we are all using our social
networks be that via the internet or whatever very differently.
For certain communities, for example, the faith community could
be their way of getting information. If I can focus specifically
on the South Asian community, you cannot underestimate the power
of celebrity. In India or Pakistan if a top cricketer, regardless
of their views on anything, says something on whatever, rightly
or wrongly the vast majority of the country does it. I am not
saying it is right what they do. The private sector has tapped
into that clearly because now Pepsi and Coca-Cola are all queuing
up to get the cricketers and the Bollywood stars et cetera to
follow them. I do not think you can underestimate the power in
certain communities of these alternative ways of reaching out
to them. Obviously the media then has to have a role.
Q201 Lord Kirkwood of Kirkhope:
The dilemma for us is how to persuade the European Community to
go for Pakistani cricketers.
Professor Randhawa: It goes back to economics,
I am afraid. Across Europe now they are beginning to see a huge
investment required for dialysis beds. Across Europe we cannot
sustain that level of investment; the NHS certainly cannot. I
think if people know that and then realise that we need some urgent
action, and we know that leaflets in different languages do have
a place but they take a lot longer and you can actually reach
people a lot quicker, then next time those countries are here
playing cricket or the Bollywood stars are here you can get them;
they do not even have to say anything, they just wear blue ribbon
with the heart and be photographed with it or start a debate,
but we need to move people on and we have to use the financial
argument. I understand that is how governments tend to operate;
if something is going to cost them they tend to take action.
Q202 Lord Kirkwood of Kirkhope:
It is interesting you mentioned the internet as well.
Dr Sque: I would like to turn to the everyday
end and just remind the Committee of the sorry state of public
information about access to the NHS Organ Donor Register and donor
cards. It became clear during the witness statement from Sir Liam
Donaldson that information was clearly not easily available to
inform people how to apply for registration on the NHS Donor Register
or even if donor cards were still being used. I think that what
we need to do is to increase registration on the NHS Organ Donor
Register and also to not forget about donor cards because we know
from our studies that concrete evidence of a person's wish to
become a donor is very important to the family. The Organ Donor
Register in some ways can seem a little bit removed because they
have nothing concrete and tangible in their hands. I wanted to
share with you the really sorry state of this very low key but
important public information reported in a paper "I want
to become an organ donor—can you help?" from a study
carried out by MacIver and Parrott in Manchester. What MacIver
did was to go around to 110 GP surgeries and 112 pharmacies in
Manchester and asked for information about organ donation. The
results were actually quite staggering: in 85 cases 76% of pharmacy
staff were unable to give any advice whilst 41% of GP surgeries
could not offer leaflets or written information about organ donation.
Q203 Lord Kirkwood of Kirkhope:
Is that available? It would be very useful to have those statistics.
Dr Long: I would like to add that again we can
learn some lessons from Europe because in Belgium and Spain in
particular organ donation is part of school education and therefore
if you begin to influence children at an early stage they will
at least begin to have these kinds of discussions. In fact in
one study again carried out in the UK where there had been some
educational input it showed that a week later at least half of
those children had been home and had that discussion with their
parents and raised the issue of organ donation within the family
environment where they had a discussion. Most European countries
are ten years ahead of us in education in schools; it is very
disparate in this country. Again there is that issue to be thought
through and that could go right across the board. Having the right
kind of person there available for children to bring questions
to means that they can then go home and be family informants as
often children are very important family informants for some of
the ethnic groups.
Chairman: So what you are really saying
is that whatever great big public awareness television programme
might be put out—which is one of the thoughts people have—unless
you actually have it at grass roots level, where families can
get information from people they know and spread it, it will not
make a difference. That is what you are really telling us and
that is what Lord Kirkwood was drawing attention to, the professionals
and the people on the ground need to know. Lord Wade?
Q204 Lord Wade of Chorlton:
I would like to explore this whole issue of presumed consent with
you. If you feel that is an ethically correct way to go, how are
people likely to react to it and what are some of the issues that
might be in some of the ethnic groups towards presumed consent
and how might they be adjusted to in a different way or can you
make exceptions? That is what we would like to explore with you.
Dr Long: I would argue that it is unethical
to presume someone's consent to such an emotive procedure—as
opposed to seeking their informed consent which of course would
come from that. I am going to base that on a couple of points.
The main reason is that the UK public we know are poorly informed
about this particular issue of organ donation and also that although
we have seen quite a bit of publicity about support for presumed
consent the sample size on which that support is based is very
small. If you could bear with me for a minute I would just say
that the arguments to support presumed consent tend to fall under
the following: the feelings that the majority of the UK public
actually support organ donation; the concern that the wishes of
the deceased will be overruled by family members; the impact that
this legislation has had in other countries on their donation
rates and also a wish to relieve family members of a difficult
decision at a time when it is problematic for them. I would like
to suggest that in relation to the majority of the British public
actually being supportive of organ donation we have a couple of
studies. One study carried out in 2003 by UKT showed that 90%
of 1,206 people were actually supportive. The follow-on study
done by the BMA and YouGov in 2007 showed that 64% of 2000 people
were supportive of organ donation. We know those figures because
40% refused so that means on average 60% are supportive. However,
62% of that group actually said they would go with presumed consent.
So they have an intention but 26% only of that group are on the
Register; 23% nationally are on the Register. There is no evidenced
link between an intention to be a donor and the actual action
that is part of that. I feel that one of the reasons for that
is the fact that when the topic of organ donation is raised there
are certain concerns we have already detailed those in relation
to how we feel about post-death procedures which come through
and people are also concerned about aligning themselves with that
in this rather informal way. Our research has shown that family
members need concrete and discursive knowledge of what their family
members actually want to happen to their body after death. I think
that is important. The second argument that the wishes of the
deceased are ignored is actually not well-evidenced either because
in the majority of the cases the family members support the wishes
of the deceased when they know them, when they have concrete or
discursive knowledge of that. Again that is not very well supported.
The issue around other European countries having better donation
rates who have this legislation, is not a clear cut issue. In
Spain they have had this particular legislation for over ten years
but they had the same donation rates as we do now, at that time,
before they put in the re-design of the system from the top to
the bottom.
Q205 Lord Wade of Chorlton:
Just to clarify that, what you are saying so far as Spain is concerned
is that it was not the presumed consent that increased the organ
donation, it was the re-organisation of their systems that created
the extra organ availability. There was clear evidence to that
effect.
Dr Long: Absolutely, without question. Also
the fact that in a survey carried out in Spain with these citizens
53% of 2000 people stated that presumed consent was "an abuse
of authority". Basically they were against presumed consent
and in the same study they indicated that Spanish families felt
that if their wishes were not asked, they would be more likely
to decline organ donation. Other evidence from France, from Portugal
and from Norway is that health professionals if I can be so bold
as to say it ignore the legislation; they will always defer to
the family, they will always ask the family. Their view is that
when they are dealing with these families at this time the trust
relationship is the most important thing. Therefore I think it
is very important that we do bear that in mind. There is a very
clear indication with the increasing figures in America and also
in Italy that it is the change to the system that has actually
made the legislation unnecessary in many cases.
Q206 Lord Wade of Chorlton:
Professor Randhawa, do you have anything to add on the ethnic
issue?
Professor Randhawa: I think in this country
we are trying to move to a more cohesive society so on that basis
I think it would be setting a very unhelpful precedent if we then
allowed certain groups to opt-out of any form of legislation.
I just do not think that would be helpful. I think one of the
things I am sure Professor Bobbie Farsides has briefed the Committee
about is that the Taskforce has been asked to look at the whole
issue about different consent models and one of the things I have
been asked to lead on is the different cultural and societal views
on different consent models. What we are doing as part of that
process is engaging with different faith and cultural groups on
how they would perceive different consent models, including presumed
consent. Regardless of what consent model we have in this country,
unless the public perceive it as being a positive step you are
in danger of making organ donation actually regress rather than
progress in this country, so we must take the public with us.
I think that has got to be fundamental to what we do.
Dr Long: Could I possibly add two other points
into that? We again could look at other European Member States
and look at some of the things they do. In the Netherlands where
they have 40% of the population on their Register they have a
model where their Register accepts an explicit agreement, disagreement
or decision to be left to a relative. The researchers there feel
this encourages individuals to register their wishes because they
know that they are safeguarded, that there is a definite "Yes",
there is a definite "No" or that they can actually allow
the decision to be made by the relative some time in the future.
That again fits in with a lot of the models that we are talking
about. To add one more thing, following the Organ Retention investigation
and in response to what Bell has called "societal expectations"
a decision was taken that a process of explicit informed consent
should underpin all post death procedures [including post mortem,
organ donation, tissue donation and anatomic dissection] and this
concept is fundamental to the Human Tissue Act [2004]. Moving
away from this stance could be seen as a desire by the Government
to negate the rights of the individual for the benefit of the
state. I think that is a damaging message to go out.
Q207 Baroness Perry of Southwark:
As you know, the EU Directive is going to deal with a cross-border
framework for the organisation of organ donation and transplantation
and an action plan for strengthened cooperation between Member
States. How would you describe the benefits of those proposed
EU level actions for citizens across the EU and, more specifically,
for us in the UK? What disadvantages do you think there might
be?
Dr Sque: I think that this proposal could actually
be instrumental in helping us to standardise the quality and safety
of organs to what I would call the level of the best. This would
actually be imperative if there is to be more cross-border transport
of organs, and then of course this would actually benefit our
UK population. I think the potential increase in the cross-border
EU organ donation and transplantation would be welcome for trying
to match difficult to match donors and this could benefit our
UK ethnic minority groups as well.
Q208 Baroness Perry of Southwark:
Do you not think there is a danger of gold-plating, making it
so difficult that a lot of organs which could be useful might
be discarded?
Dr Sque: If directives are enabling rather than
restraining then I think they can be helpful. I think there is
a fine balance to be struck there, yes. Also I think harmonising
practices across Member States such as for non-heartbeating donation,
paired and altruistic donations and expanding criteria donors
could potentially provide a greater pool of organs for the Member
States and also augment the programmes in the United Kingdom.
We might actually have difficulty in having successful programmes
if we go this alone. I think it could also be helpful in collating
data about transplant outcomes for recipients and particularly
for living donors because we do need to continue collecting information
in that area. We could more quickly accrue data about unusual
cases and this of course would help to provide better evidence
for the United Kingdom transplant programmes. It could also be
instrumental in coordinating and quickly and effectively disseminating
best practice across Europe and this could also benefit our donation
and transplant programmes. As I said previously, Europe could
help particularly maybe with the financial end of things; as Professor
Randhawa has said public education does have an economic cost
to it. They could help with that for transplantation across Member
States which would also help within the United Kingdom. At a European
level there could be help to influence health policy to reduce
life style choices and behaviours that actually precipitate the
need for transplantation and this again could be beneficial to
the UK population. Also, as I said, providing resourcing for an
organ donation system across our Member States. Certainly some
of the disadvantages would be that if any directive was constraining
rather than enabling and also was without cultural sensitivity
because I do think it is important that we bear that in mind across
Europe. I think there is also a danger of a two-tier system developing
where you might find that there are countries that feel a pressure
to be donor countries and others to be seen mainly as recipient
countries. There is potential for a lack of transparency in the
allocation of organs and at the end of the day this could in fact
waste precious organs.
Chairman: That takes us very nicely to
the other difficult area which Lord Wade is going to ask about,
which is about organ tourism.
Q209 Lord Wade of Chorlton:
How serious do you think this question of organ trafficking and
organ tourism is? How serious do you think that the problems of
these activities within the EU and particularly the UK actually
are?
Dr Sque: Can I just say that I condemn without
reservation any practice that actually subverts or violates a
potential donor's human rights or involves coercion or deception
of any kind. What I would say to you is that we have little evidence
at the moment about organ trafficking and tourism, certainly in
the United Kingdom and across Europe. We need to bear in mind
that we have human trafficking going on in European countries
and if we have human trafficking there is also the danger that
organ trafficking could become problematic. I think there is a
very important role here both for individual countries and for
Europe to be alert and to practise surveillance for these particular
issues. I also think that it would be very helpful if transplant
units collected data about patients who are going abroad and coming
back with kidneys. That has a cost implication for the National
Health Service as many of these organs are not well-matched when
they are transplanted abroad. We need to know about that cost
as well and I do not think we have very good data at the moment.
Q210 Lord Wade of Chorlton:
How can we deal with that? What can one practically do to stop
that happening?
Dr Sque: I think that certainly both within
in the UK and at European level there would need to be very strong
legislation against it. At the moment the criminality is not clear.
Are we going to say that we would bring a case against a doctor,
for instance, that had supplied a patient with information that
they could take abroad in order to get a kidney? I think that
needs to be looked at in legislative terms both within Member
States and across Europe.
Chairman: We are going to have to stop
there; we have run over time. Your evidence has been utterly fascinating.
I can see from my Committee members that if I allowed them to
we would go on all morning listening to you and I am only sorry
it is my job to make sure we finish in a timeframe otherwise I
would have wished to ask further questions and go on listening
to you. We are very grateful for you coming and giving us the
benefit of your knowledge. There are one or two bits of research
you have mentioned; will you please make sure that we do have
the references and the research if necessary. If there is anything
you think you have not covered in your wonderfully comprehensive
coverage which has been fascinating, do let us have that too.
Thank you very much indeed.
| 
