Examination of Witnesses (Questions 160
- 179)
THURSDAY 24 JANUARY 2008
Mr Roy J Thomas, Mr Raj Aggarwal, OBE, Ms Lesley
Bentley, Ms Elizabeth Gibb and Mr Philip Hollobone
Q160 Chairman: I suppose the
question is, where there are not enough donors, would it be useful
to have some common, not maximum, standard? I thought Ms Bentley
made a very important point when she said that documentation when
that has to be achieved differently would be a useful standard.
As this may be a European standard, because it is to do with safety
and that is a European issue, do you think that would be helpful?
Mr Thomas: I think it would be helpful but,
at the end of the day, I think it must rest with the clinician,
the patient and the patient's family. That discussion we were
having earlier with Lord Lea has to be put in context, and indeed,
in Wales we have had kidneys from Spain and they have proved to
work very well for our patients, I should add, and we were pretty
much delighted and the patient receiving it was very delighted
in January 2007. We have had that experience and it has been a
good one.
Chairman: Thank you very much indeed.
Can we move on then to models of consent?
Q161 Baroness Perry of Southwark:
Could you tell us what you think about the current consent processes
for organ donation in the UK and what do you think about proposals
for a move to opt out or presumed consent? When you answer that,
could you perhaps tell us what evidence you are aware of that
support your views on the issue.
Ms Bentley: My Lord Chairman, may I preface
this by saying first, as a patient liaison group, our first concern
must be for those patients who are dying because there are insufficient
transplant organs available, therefore it is crucial to find a
satisfactory way of raising the number of potential donors. Just
putting it in context further, if a system of presumed consent—and
I will come to the current one—was found to be the crucial
factor in achieving the end aim of providing more organs, it might
have to be considered. However, for us and our group the issue
of informed consent for both the potential donor and for the transplant
patients is also extremely important and a system of presumed
consent would compromise this. Ideally, we would look for a system
like we have now, where you have to opt in. Looking at the current
system, obviously, we have a relatively low level of donor volunteers.
It seems to us that insufficient effective action has been taken
to make the most of the current voluntary opt-in system, one that
is based on the principle of individual informed consent. To us,
it would seem logical therefore to improve the current system
within the current opt-in framework. A lot has been mentioned
earlier about education and we think this is vitally important
because we feel there does not seem to be an appreciable understanding
of the donor need problem or the processes of becoming a donor
or the process of donation generally. Therefore it would be premature
to suggest a system of presumed consent before ways had been found
of improving the effectiveness of the current system. The background
is lack of awareness but I also feel there may be a combination
of factors leading to this problem of the number of organs and
there needs to be a look at the transplantation process. That
may have weaknesses, such as I have mentioned: transplant units,
transplant doctors, transplant coordinators, medical training
on the identification of donors and ITU beds. That, we feel, needs
to be looked at as well to make sure that that is actually functioning
effectively. We feel that if the public are not made fully aware
of the consent procedure itself, as we have it now, and its ongoing
potential, then ignorance and inertia will mean insufficient potential
donors will register. We also feel that some of the possible routes
to organ donor registration seem to occur rarely as a prompt to
the public. So completing a driving licence application, registering
with a new GP, Boots Advantage card, applying for a European health
insurance card—they happen fairly rarely, and completion
of the relevant organ donation questions does not seem to be compulsory.
The public need to be more aware of that. Do you want me to go
on to presumed consent?
Q162 Chairman: Yes, please.
Ms Bentley: Basically, given that, given that
we do not feel the maximum has been made out of the system that
we have at the moment, it would be premature to move to a system
of presumed consent, given that you will have a background of
the public who are unaware of donation generally and of the issues,
never mind presumed consent, and a medical system that may not
be working to full capacity in terms of actually taking that on
board. If you moved to presumed consent and if that did increase
initially the number of organs available, you may not actually
have the capacity within the hospital system to deal with it,
which means you would instantly lose or run the risk of losing
patient support. This system is asking such huge questions that
you really do need patient and public trust and support in all
this to go with you, so it would be better to build up that awareness
and only if, even after that, there were not enough organs coming
forward, you then discussed the option of presumed consent. That
would be more constructive. If presumed consent was suggested,
we would have a lot of concerns because we do feel informed consent
is of vital importance to patients. It is central in the GMC's
Good Medical Practice and the Human Tissue Act, which is
only newly implemented. We just feel it is so important. We feel
it is a difficult situation: if someone does not know that they
are opted in, how can they know that they can opt out? Even that
choice may in theory be denied. There must be no risk of the public
seeing themselves as providers of spare parts by default for clinicians
keen to save another life. That may be an interpretation, however
unfair. It would have to be very important to ensure the separation
of decisions made in critical end-of-life care for those made
by transplant surgeons thereby guaranteeing that all such decisions
are made irrespective of any transplant potential of the dying
patient. I think too the public, as was mentioned earlier, as
well as knowing how to become a donor, need to know what it means
for a recipient. What does it mean to be on dialysis? They die
when they do not get an organ. They need to know something about
the process, they need to be spoken to about what does death mean,
how it is defined, what is brain stem death, what is a non-heart
beating donor. If the public had some idea of what all these things
meant, they would understand it, they would know what questions
to ask to be reassured, and they would feel more brought into
the process. I think this needs to be done. The other query would
be what age you would be opted in; we would be really concerned
about what that was, and then what the roles of the relatives
would be in the last analysis.
Q163 Baroness Perry of Southwark:
Ms Bentley, obviously your committee has thought about this very
carefully.
Ms Bentley: Yes.
Q164 Baroness Perry of Southwark:
Have you taken wider evidence? Do you know what evidence exists
to support your views?
Ms Bentley: For some of this, we actually got
the research report done for the Jeanette Crizzle Trust on the
background awareness, which gave us a lot of information, as did
a lot of your accompanying documents and also the initial report
from the Organ Donation Task Force on the medical framework and
the readiness for actually coping and having capacity. The wife
of one of our lay members did have a transplant some years ago,
so we have knowledge of that, and one of our surgeons on the lay
group is a transplant surgeon, but we are just 12 people making
those views and I stress that those are our views.
Q165 Baroness Perry of Southwark:
I did hear one recipient on the radio saying very passionately
that what mattered to her most was that the organ she had received
had been voluntarily given and she felt that gave her a relationship
with the person and she would have hated to have had something
that had just been taken from somebody without their consent.
Ms Bentley: Absolutely. I think that is very
important.
Q166 Chairman: That is extremely
clear. Do either of the other witnesses want to add to that?
Mr Thomas: I would like to disagree profoundly
with what has been said. We in Wales—and we are supported
by the BMA in Wales, who have been lobbying for this presumed
consent change in legislation for some years—have been arguing
for the last six or seven months for a position on presumed consent.
Indeed, as we have a devolved government, we are actually reviewing
it with the National Assembly for Wales and the current Minister
of Health and Social Services, Edwina Hart, in our view has been
very brave in coming out publicly, as did the Prime Minister some
week or two weeks ago, and giving a personal view, and so has
our First Minister and indeed the other leaders in the Assembly.
One of the key issues is education but also we have actually asked—and
you have seen it in our written evidence—the Minister for
a consultation with the public. We believe that is essential.
The Minister has taken on board that challenge. We believe that
in educating the public you have to have a discussion and a dialogue
with them. Unfortunately, we have some issues with the top down
approach of the Task Force that actually puts recommendations
out there, and I must say, I have much praise for the Task Force
report that came out last week because it has been very honest
and it actually exposes weaknesses in the system that we have
in the UK. I share the concern that perhaps the system might not
be able to cope, because we have some excellent transplant coordinators
in Cardiff and I know the demands they have when they are working
24-hour shifts. But I also know the demands of patients because
we meet them every day. I have a 43-year-old man from Bridgend,
who last year went to the Philippines with a BBC camera crew for
three weeks, seeking a kidney. It brings it home to you when you
have him perhaps on the phone every month discussing his position.
Mark Schofield is pretty well known in Wales for wanting to have
a kidney so he can get on with his life with his children. That
perhaps is the extreme end but we would prefer to have transplants
in Wales, not in the Philippines, or in the UK, because we do
not support that, obviously, but we do not actually support some
of the remarks of UKT, who in the evidence given to you have been
lobbying, it seems to us, against presumed consent. That concerns
us because it is not a matter for a government agency to actually
put a view. It is for a government agency to go out there and
help expose the issue and actually get the debate going. That
is a concern. Looking at evidence, and there does not seem to
be reference to, and we put it in our written submissions, the
Harvard University, well respected John F. Kennedy School of Government,
the Abadie and Gay paper, The Impact of Presumed Consent Legislation,
which looked at 22 countries over a 10-year period, so it is quite
an in-depth study and I think it is worth reading. They did actually
come out with the fact, having looked at all the determinants,
that presumed consent legislation did have an effect. I know UKT
has submitted something quite different and the architect in Spain,
who has obviously given evidence to the Task Force, believes that
the system is the important issue. Of course it is; the system
is bound to be important but you need that overall consent to
have organs of high quality available. We are concerned that there
is danger of fear from the public but there are people dying and
so we have to also look at that. A thousand people will be dying
this year. We have to take account of that while we intellectualise
on these things today.
Q167 Lord Wade of Chorlton:
Why do you feel so convinced that the general public would automatically
accept, in their present knowledge and understanding of these
issues, if presumed consent was suddenly confirmed by the Government
as the way forward? I take an example of the situation in Alder
Hey a few years ago, where the smallest samples were taken from
children that had died, and the parents knew that they had died,
yet when they found out that their parts had been taken without
their permission, there were riots in Liverpool. Just put a position
where suddenly somebody ... We are not dealing with people who
understand all these things. Take my own point of view. If someone
had asked me 30 years ago, I would have said, "No, I don't
believe in this. It's a lot of nonsense. You are ill, you die
and we are all dying all the time. We can't solve all these woes,"
and I would not have even known or thought about it. As you become
more involved in these issues, you learn a lot more about it but
if you were to ask the majority of 30- or 40-year-old people in
this country, they would not want to be involved in these sorts
of activities. I must admit that my views are much more akin to
the lady who said that before we can bring in presumed consent,
surely we have to educate the public about the implications of
it and understand much more about the need for it and the impact
of it. Do you not agree with that or do you believe we can suddenly
impose this on the public?
Mr Thomas: Lord Wade, I agree with the education
position wholeheartedly. We are a small country in Wales and most
of the population is in the southern part of the country. It is
not the size of the South East or London but we can get out and
discuss matters in a far more confined way. Why am I convinced?
I can only, from my experience, look at patients who have been
desperate—and I have met them over several years. I had
a little 14-year-old, who Baroness Gale took around your Lordships'
house just before Christmas in November, who went on the list
on 29 November and had a transplant in Bristol—because our
children are transplanted in Bristol from Wales—on 30 December.
The relief to that family, having gone through all those years
of desperation, is a huge message. I agree with you that perhaps
not everybody is touched or understands the position but if we
do not start organising ourselves, and I think perhaps in the
smaller regional parts of the UK you can do that, because that
is the US model, and I believe that not-for-profit organisations
should be doing it, not government, by the way. I think UKT do
a fine job but sometimes it is Big Brother and sometimes the voluntary
sector and the charitable sector can help in that debate, whereas
government is seen as in a different context.
Q168 Lord Wade of Chorlton:
If you have presumed consent, it would have to be legalised. You
cannot just say you have presumed consent because an organisation
like you say we are going to have it. The government would have
to pass a law to make presumed consent an acceptable activity.
Mr Thomas: Absolutely, Lord Wade, and that is
what we have been lobbying for.
Lord Wade of Chorlton: Voluntary organisations
cannot decide to do it.
Q169 Chairman: Mr Thomas,
could I just ask you a supplementary question here? I probably
should have declared my interest as a trustee of Little Hearts
Matter. I did not because we have not reached the stage where
our children can be transplanted but it will come. These are hypoplastic
left heart syndrome children. I say that because you see the position
I am coming from, which is that I actually at the moment do not
have a view either way and I am listening carefully to the evidence.
One of the things you did say is that you are a small country
in Wales, a country many of us know and love but, in order to
have the right number of organs, depending on type and referencing
and all of those things, the Welsh community is going to have
to look more broadly. This is why we, as a European Committee,
are looking at the European dimension of the whole issue. Therefore,
if you solve it in Wales and it is different in another country,
what are the issues going to be for some of your patients?
Mr Thomas: That is a very good point. Wales
is part of the European Community. That is not a glib point but
we are, and, for example, on smoking, Wales was at the forefront
of the banning of smoking. Again, it got round the pubs and clubs
of the valleys, and there was a consensus that smoking is harmful.
It was not the case 20 years ago. If I was sitting here then,
I would be booed in the gallery for saying that. We are and we
will continue to try and change the legislation in Wales and I
think, to answer your question, from the point of view of patients,
and I mentioned Spain earlier, a patient would receive, gladly
receive an organ from Spain. So Wales as a region, and I am sure
there are other parts of the UK, would very happily hook up with
other parts of the European community to look at these issues,
particularly the patients who are waiting, and there are over
400 in Wales waiting and I can assure you that some of them are
very desperate.
Q170 Baroness Neuberger: In
a way, we have covered part of my question. We have been looking
at high rates of refusal in the UK and there is some evidence
that they are particularly high in some ethnic minority groups.
You were talking particularly, Ms Bentley, about how the system
works and the extent to which there needs to be more explanation
and more discussion with possible donors. Perhaps it is a question
really for all of you but to what extent do think that it really
would help if the system were changed sufficiently that doctors
or transplant coordinators or whoever else were both willing and
indeed had the opportunity to explain the issues much more to
relatives of potential donors? I think we would also like to know
about other ways of improving the position other than presumed
consent, so other ways that the system as it stands could be improved.
I think it is worth saying that one of the key pieces of evidence
is that in 20% of cases or so it appears that the possibility
of donation is not raised at all with relatives, and that is clearly
something that I think would concern us.
Mr Thomas: I would like to bring the Chairman
of the Trustees in on this, certainly on the ethnic side. He is
trying to convert me to Hinduism very easily as an Anglican and
I would be delighted actually because we share a lot of things
in common. Family refusal is what we are talking about here. The
most commonly reported reason from the coordination team that
we have in Wales for declining organ donation that has been reported
to us is because the family member felt the need to protect the
body of the deceased. Families sometimes do not want to relinquish
the guardianship of the body. That is a big issue. They want to
keep it intact and do not want it to be interfered with. We heard
from my colleague on the right on that. The other reasons that
we have come across, because we have a very open relationship
with the transplant coordination team—in fact, we erected
a memorial for donor families in Cathays Park in Cardiff in October,
when we had a thousand families from across the UK come to Cardiff
for the memorial unveiling that we had. The other factors include
circumstances at time of death, obviously. People needed to have
time to come to terms with the death of their relative, especially
if the death was sudden or their body looked normal. Lack of knowledge
is a key point. Some people have said to us that they did not
have enough information about what organ donation involves, and
that is clear and we heard that earlier. The donation discussion—issues
have been raised with us around the timing and sensitivity of
discussions between relatives and healthcare professionals. A
doctor is not always the best person to deal with it. That is
why we have our coordinators and we welcome the task force recommendation
of 100 more. We are hoping they are all in Wales, of course. Witnessing
the observable ending of life is a big issue, and some people
have said that they needed to be present when the relatives' heartbeat
stops.
Q171 Baroness Neuberger: I
think that is particularly common for some faith groups and some
cultural groups. There is clear evidence of that.
Mr Thomas: I would like to bring my Chair of
Trustees in on the faith group now but if I may put to the Committee
something that we have researched in advance of this Committee,
the Journal of Advanced Nursing have a report on this from the
University of Southampton, and it is worth looking at for your
Committee, where they put adverts—I am not sure of the Committee
is aware of this—in newspapers asking for those families
who at that time did not fulfil the wishes of the deceased and
how it felt for them. It is quite a useful summary.
Q172 Chairman: Maybe you could
give us the reference.
Mr Thomas: I will. Can I bring my colleague
in?
Q173 Chairman: Can I just
ask if any of the other witnesses want to come in on this?
Ms Bentley: Just to say—it is probably
an obvious statement—that it is an extremely traumatic time,
obviously, for relatives to make a major decision on organ removal.
I agree it would be ideal if someone could explain to them and
that would probably help them to ease it but, again, if they are
given more information that they already came with through better
education, that may well then be a good issue.
Mr Aggarwal: I am the Chairman of Kidney Wales
Foundation and a trustee as well. Thank you for giving me this
opportunity to say a few words. Leaders of all six major faiths
in the UK—Christianity, Judaism, Islam, Hinduism, Buddhism
and Sikhism—have all explicitly endorsed organ donation
and transplantation. Even in Wales differences of opinion exist
among local faith leaders, although it is not a major issue. There
is a clear and urgent need for local leaders to use their considerable
influence to promote support for organ donation in their communities,
particularly given that opinion at grass roots does not reflect
the official view of the faith. This is because some groups are
suspicious of government at a local and national level. Groups
are concerned at the heavy hand of government, of EU matters,
with the top-down approach. It is well documented that there are
considerable problems relating to organ donation and transplantation
stemming from a culturally and ethnically diverse population and
the same is true in Wales. There is terrific variation between
different areas of Wales but the concern we have is communication
and trust within these patient or donor groups. Government, especially
UKT, needs to communicate differently with these groups, perhaps
through religious leaders, priests. I think these priests are
very important at the last resort, during the last few days. They
can give a lot of counselling, a lot of advice and a lot of support
and I think their views are very strongly taken. Generally, I
feel with the ethnic community it is just a question of awareness.
There is not much difference basically between all these communities.
I think they are all very generous. It is a question of awareness,
education, training, support, and I think exactly the same applies
all over the UK.
Ms Gibb: I am Elizabeth Gibb, and I am a trustee
of the Jeannette Crizzle Trust, with special responsibility for
the ethnic minority and hard-to-reach groups. I am also a trustee
and health lead for Welwyn Garden City, Hatfield Black and Multi-ethnic
Group and the hard-to-reach group. Because of where I sit in the
BME family, as it were, I work through the BME networks so that
in Welwyn Garden City, when the presumed consent came out, that
was an immediate trigger for me to alert people that this was
here and what they needed to know. That went immediately down
the cascade, so then I went up to London, to Notting Hill Gate
and into Suffolk and Norfolk—it was out of area a bit but
that is why. My experience in BME work was with a medical background
and when I was in London for the Notting Hill riots, specifically
as a health lead but also a community lead. We have just started
some research, and I have brought this copy as far as it has gone
for your Lordships, because it is not complete but the work that
is coming through is very interesting. I am not at the top; I
am at the bottom. I know the imams, I know the church leaders,
I know the community workers and, because they know me and this
is the secret, is it not? They know the face; they will talk to
you and listen to you as an equal, not as a top-down. Some of
the remarks that have come back have been incredibly interesting,
and I would recommend this, although it is incomplete.
Q174 Chairman: Could you give
us the key points?
Ms Gibb: Yes. The problem is, or at least what
I am beginning to see is that people are in their little boxes.
The doctors are in a little box, the community workers are in
a little box, anybody else, the church leaders, I am in a little
box, and it is trying to bring these together, in which I did
succeed to a certain extent. They are willing. I agree with everything
you say. They are not against organ donation. This came through
very, very strongly. They are very caring, very responsible. They
sat down and hashed out these but they do not like presumed consent,
and if you go down the presumed consent road, my feeling is—and
it is a personal feeling—that you could lose a lot more
ethnic minorities.
Q175 Chairman: Could I ask
you one question? One of the things we have learned in the Committee
is that the vast majority of the community give the impression
that they are in favour of consenting. The problem is they do
not act upon it, particularly so in the minority communities.
What we are looking for is what would be the trigger to help us
to encourage those communities to come forward more? That is really
what I think we are all looking for, how we actually ensure that
more donors come forward from the ethnic minority community. Everyone
has good will; it is action that is the problem.
Ms Gibb: Take away "ethnic minority"
and "hard to reach" and think "people". I
have only put this in here because I am coming here for the ethnic
minority. I think people: people who have opinions, people who
want to learn, so you need education, you need a cascade of information.
What I come across all the time with BME groups is "But I
never heard about that." There are language barriers, there
are isolation barriers. There is at the moment a certain degree
of increasing racial barriers. When they can get down to the nitty-gritty,
they are responsive but they will not act on uninformed consent.
Chairman: That is really helpful. That is the
piece of evidence we were really wanting you to say.
Baroness Young of Hornsey: Thank you
very much for what you have said and I am very interested in the
research you talked about and I would be keen to see what that
is about. I absolutely take your point about people rather than
always categorising and dividing people up. Nonetheless, there
are three factors which mean that what we currently call black
and minority ethnic people are seriously affected: there is the
high proportion on the register, there is the higher rate of refusal
from relatives, and there is also a lower proportion of black
and minority ethnic people on the donor registers. Those three
factors combine to make it a particularly acute issue for a specific
grouping within our society. One of my questions is that people
tend to collapse black and minority ethnic into faith groups as
if that is the only determining factor and I am very interested
to see if that might be something that we can knock on the head
and look at it as people, people with specific physiological and
medical needs. That is one thing I would like to hear your comment
on. The other thing I have been trying to get at but nobody has
been able to identify so far is the extent to which other groups
that are marginalised, either within this society or within other
European states, also have a lower rate of giving consent for
organ donation, for example, Laps in Finland, who see themselves
as a specific ethnic minority. I know that is not in the EU but
other European countries, whether there are other situations with
marginalised groups, and within this country with the working-class
people, for example, whether there is a social class dimension.
Chairman: Would you mind, in view of the time,
as this goes very much into Lady Morgan's question, if we put
Lady Morgan's question to it and then ask the witnesses, because
that will help us a little bit.
Q176 Baroness Morgan of Huyton:
My question really is about, how you feel you have managed to
place organ transplantation in the social and political world
how far you are getting it up the agenda, and obviously, in relation
to the specifics of our inquiry, to what extent the EU involvement
is going to be a help or not or do you think it is not going to
have much impact? What do you think the implications of that will
be? Are there any countries, regions or groups within Europe that
you know have been particularly successful at actually moving
the agenda on the issue?
Ms Gibb: This is quite complicated; you might
have to remind me of some points. I have been very successful,
so successful that I have challenged myself as to whether I need
to go into it more deeply and put more checks on it. You have
to be aware that the BME groups are now setting up their own charities
to educate their own people. This is very dynamic and it is being
cascaded down the network. One group is starting up. There is
a national one, so they are going along that. Most of the inter-racial
groups, minority groups, tend to get together. It is not just
black people and Asian people. I come across Chinese, German,
refugees, Afro-Caribbean, Africans—and remember, Africa
is a large country. There are a lot of nationalities in there,
and in the Caribbean—Spanish, French, American, New Zealand,
because they are ethnic minorities if there is only a few of them,
and they tend to get together. So yes, it is cascading out. The
education, even though it is very early, is beginning to show
results. So that is going on. I agree with Lord Wade that it is
actually essential; the only way forward is education, and the
education must not be only with the population; it must be with
the doctors and the nurses. They are too isolated.
Mr Thomas: That is very interesting indeed.
We have the Welsh language as well in Wales, so if you look at
a place like Carmarthenshire, 50% of people, one in two, speak
Welsh. There is a generational issue and I endorse the "we
are all human beings" outlook, because the older generation,
say my grandmother, would actually not be inspected by a doctor
probably up to her elbow and leave it at that. So there is a different
view of life and there is a lot of trust in the clinicians and
the doctors that we have now. We have been campaigning only for
five months, so we were pretty focused so we did not upset the
politicians too much and go on about it, but the Health Minister
in Wales listened and we will have this discussion. She has also
asked us as a charity to pull together the other charities—the
British Heart Foundation, the cystic fibrosis, liver and lung
charities—to talk about organ donation. Sometimes it is
at the top of the league, as well as fund-raising, and sometimes
it is down in the middle of the league. We are clearly leading
on it because kidneys are in desperate need. She has asked us
to pull together a group and we are hoping that we will have our
own campaign in Wales, beginning from February, and use that to
educate and to discuss with all ages, all generations and all
groups the desperate need in Wales for people who do not have
a properly functioning kidney. We are pulling that together and
that is as a result of the campaign but one of the greatest achievements
is that we have hurried along, after five years, a new dedicated
transplant unit in Cardiff, which will be with us soon, and £4.2
million, because you do need the facility and we are hoping—and
I was not joking—to have more coordinators because they
do a fine job. The campaigning side is quite important.
Q177 Baroness Morgan of Huyton:
Can I just try and link what you two are saying and see if I am
getting it right. I would like you to come back if you can to
whether or not there is any European angle to this but it seems
to me that, in different ways, what you are both saying is that
the more local or the more targeted the campaign, the more effective
it is. You think you have more chance if it is Welsh-focused to
actually up the number of donors, and you think you have more
chance if it is through the BME networks. I suppose in the back
of my mind I am very struck since the large cancer charities merged
by how effective their national advertising is. It is very personally
based. It makes you jump up. It is very much about people. Do
you think there is any role for a much bigger campaign that is
not local in fact to get the issue up the agenda or are you saying
it should all be locally focused or network focused?
Ms Gibb: I think it is both. For instance, I
managed to get traveller clan leader to come to one of my meetings.
You would probably not have found a traveller easily in a national
campaign. You need the two levels, because one will complement
the other. If you have language difficulties ... If I could interject
this for a moment, one of the things that caused tremendous hilarity
in one of my meetings was a doctor on the television saying "Of
course, every person will be told about this before it becomes
law," whereupon I lost the meeting. They just collapsed,
because if you have language barriers, you are sensory deprived,
you are isolated, you are a refugee, you are an economic migrant,
and even if you belong to the black and multi-ethnic community,
and certainly travellers because they are travelling, you do not
get this information. There again, I am only a little cog but,
as a lead in that area I can cover a lot of people because I can
link with the traveller work, I can link with different charities.
I think it is working locally, working nationally, working together,
with everybody that is involved in the field.
Mr Thomas: I endorse that. It is the national,
the local, the political will, whether the Prime Minister is in
favour of it. All these things are taken into account when the
discussion is there over the kitchen table, which unfortunately
does not take place at the moment, on death. We are looking at
a local campaign and I think charities are essential here. The
British Heart Foundation did a great job, I think, in terms of
smoking, and they were given money by, as I understand it, the
Department of Health. We have taken a similar line with our Health
Minister in Wales. If I may be rude about the civil service for
a minute, they are not very good at putting adverts together,
we would suggest. Also, when you go to the television companies
with your card rate, you find that they will be thinking government
is a bottomless pit but when we go to ITV or whoever these days,
at least we think we can get a better negotiating stance. I think
that was true of the British Heart Foundation. Also, you keep
your money tight. I am not saying that NDPBs are not accountable
of course but at the same time, we could work far better together.
One of the things I would like to stress to UKT, if they are listening,
here is that perhaps, instead of just spending, which they have
done, £42,000 in Wales in 2006 and meeting the Assembly once
in a year, they should actually see what they can do in regional
parts of the UK.
Chairman: I am going to stop you there simply
because I do want Lord Lea to press the European dimension a little
more, which we are still trying to get you to answer.
Q178 Lord Lea of Crondall:
Can I link it to a linked question in a sense? In a pub the other
day somebody said, "You're in Parliament, aren't you? What
is all this? Taking all our organs?" I said, "No, et
cetera," and all that. I must say that the biggest thing
in the last 20 years that has been done to raise awareness is
what the Prime Minister said. I do not think there is any doubt
about that. No-one would have asked me in the pub otherwise, I
do not think. Secondly, I said, "What is your take on it"
and he said, "Well, I'm dead. They can have what they like,
can't they?" I did not go into detail: "Does your family
know that?" and all the rest of it but the implication was
"I'm not going to do anything about it" so we are trying
to look for a halfway house between doing something which does
not perhaps go as far as the opting out issue but nevertheless
... My question is on the European organ donor card. In the Commission's
Communication, and I am sure you have seen what it is all about,
it would help raise public awareness and make it easier to identify
people willing to donate organs after death. The organisation
UK Transplant told us however that in their view such a card would
be confusing for people and could not operate effectively across
the EU because of the different forms of consent in place in each
country. So there is the paradox which relates, if I may say so,
to what we have been discussing in the last 20 minutes. You have
to square that circle. Could somebody comment on that?
Ms Gibb: I had some Spanish and French in my
group, so it is very small, but the issue they raised was that
different countries within the EU have different transplant regimes,
and they did not think it would work. They said "Why can't
we just have a card which says yes or no and carry it with us
because the other is too complicated?" Their feeling was
that they also would not be happy carrying one if they were travelling
across Europe and going through another country that had a different
... Do not ask me why because I have no idea but they had reservations
within themselves. In the group, out of 275, there were only about
11 European people, so it is very low but they had their own doubts
about it because they cannot see it sitting comfortably with other
countries. They came from different countries.
Q179 Lord Lea of Crondall:
Sorry, we are talking at cross purposes here. I am in France on
holiday and I am killed. That is one situation. The other one
is a Europe-wide scheme so we have roughly parallel opt-in, opt-out
arrangements, backed by a card. Would we be talking about a difficulty
if it is just that I am in France and my own driving licence on
the one hand. Obviously, there is no difficulty about that. Can
you just elaborate a bit on why a Europe-wide voluntary card would
be a problem?
Ms Gibb: I do not think they felt it would be
easily transferable, but as I am not a European—
|
