Examination of Witnesses (Questions 145
- 159)
THURSDAY 24 JANUARY 2008
Mr Roy J Thomas, Mr Raj Aggarwal, OBE, Ms Lesley
Bentley, Ms Elizabeth Gibb and Mr Philip Hollobone
Q145 Chairman: Good morning.
We are extremely grateful to you all for coming and giving evidence
to this Committee. I know some people have travelled some way
to be here and we do appreciate that. There are some very important
issues arising from this inquiry. I would remind you that the
focus of this Committee is on the European dimension. I say that
because there has been so much going on across the whole front
in terms of organ donation and we began this inquiry some time
before that came into the public eye. You need to remember that
is our particular focus, which is pretty important in itself.
Thank you too for your very helpful written evidence, which we
have all had and read, as well as information from Patient Concern.
They were not able to attend today but they will give us further
written evidence, after this session. I have to give you some
housekeeping points. I remind you that the session is open to
the public. There is a verbatim transcript taken of your evidence
and this is put on the public record in a printed form and on
the parliamentary website, so there will be wide circulation of
your evidence. A few days after this session a copy of the transcript
will be sent to your office for checking. It is important that
you check that for accuracy and send it back as quickly as possible
as there are tight timetables for our Committees. If you think
we have not covered everything during the session, you can to
submit supplementary evidence to clarify or amplify any point.
However, we hope we are going to cover quite a lot during the
time we have here today. There is a quite important point: because
we do value everything you say, we would ask you to try and speak
up and speak clearly. It is quite helpful if people speak as I
am, as if they are in a public session, rather than as though
we are having a conversation. It just makes it easier and we can
then get it on the record more clearly. Could you start, when
we do start, by stating your name and your official title? That
is for the record. We have to do that for the record. Then we
will ask you at that point about opening statements and we will
move into questions. Could you begin by stating your names for
the record?
Mr Thomas: Good morning, my Lord Chairman. It
is a privilege to be with you all this morning and to give evidence
to you following our written submission. May I introduce myself?
I am Roy Thomas, Executive Chair of Kidney Wales Foundation. I
have on my left the Chairman of Trustees, Raj Aggarwal. As I say,
we are delighted to be here today.
Ms Bentley: My Lord Chairman, thank you very
much for inviting me to give evidence to this Committee. I am
Lesley Bentley and I am Lay Chair of the Patient Liaison Group
of the Royal College of Surgeons England.
Mr Hollobone: I am Philip Hollobone, Member
of Parliament for Kettering and also a trustee of the Jeanette
Crizzle trust. I am standing in for Adam Crizzle, who is the founder
of the trust, and I am accompanied by Beth Gibb, who is behind
me, who is another trustee.
Chairman: Thank you. Before we do opening
statements, the thing I have to do at this point, now we know
who you are, is ask if any Members have any interests to declare?
Baroness Neuberger: It is a slightly bizarre
one but my brother-in-law is a transplant specialist, particularly
in livers. It would be awful if you did not know that.
Baroness Gale: My interest is I am a patron
of Kidney Wales Foundation.
Q146 Chairman: Are there any
other declarations? I must explain that Professor Farsides is
our specialist adviser who helps us with any technicalities as
we are a lay Committee and she is a member of the Department of
Health Organ Donation Task Force. Mr Thomas, you were going to
begin with an opening statement.
Mr Thomas: Kidney Wales Foundation has been
in existence since 1967 and we have a proud history, including
lobbying Prime Minister Margaret Thatcher in the Eighties to put
donor card applications in driving licences. As you know, the
DVLA sits in Swansea in South Wales. We were successful in that
and established Lifeline Wales in the 1980s with Manchester University,
which then was a new registry online. Computers were then in a
different age. To mark our 40th year last year we launched a high-profile
public campaign from patients which was called "People Like
Us" and I would like to talk about that further, if I may,
this morning. From the research prepared in Cardiff for this Committee
today, we have found that a record number of people are listed
for kidney transplant in Wales, with a dramatic 16.2% increase
on previous year's figures. In total, since 2001 there has been
a 44.1% increase in the number of people listed for kidney transplants
in Wales from 284 people in 2001 to 431 in 2007, and that is at
the end of December. This compares to a 36.9% increase in the
same period for the UK. There are many reasons why we are here
today, particularly for patients, and I would like to describe
what we have been doing in Wales.
Q147 Chairman: Can I just
remind you that we will have read all your papers so anything
that you say we would like to be supplementary to your papers
because all Members will have read your documentation.
Mr Thomas: I will leave it at that.
Ms Bentley: My Lord Chairman, I would like to
make a statement because patient groups vary in structure and
role and I just wanted to clarify what we are exactly so that
you know our remit. The Patient Liaison Group at the Royal College
of Surgeons works to bring patient concerns to the attention of
College and provide lay input to numerous policy-making committees.
It is made up basically of 12 lay members and six surgeons. The
lay members are either patients, surgical patients, or carers
of a patient. They are volunteers who are non-medical and they
do not represent any organisation. Their views are their own as
individuals, so we are a group of individuals with a patient perspective.
The PLG therefore provides the collective lay view from individuals
who bring a patient perspective to their response. We make considered
responses based on patient experience and this will be reflected
in the answers given to the Select Committee.
Mr Hollobone: The Jeanette Crizzle Trust was
set up to encourage greater awareness of the possibilities of
making blood, organ, bone marrow and tissue donation following
the death of Mrs Jeanette Crizzle and the Trust's view is that
greater awareness of donation can be facilitated through an education
programme.
Q148 Chairman: Thank you very
much indeed. We are going to move into the questions. You have
seen these questions in advance. However, I should just tell you
or warn you that Members can ask any supplementary questions of
witnesses. We are going to address these and I understand you
have decided who is going to take the lead on which question.
The other Members may then want to add. Can I just say, please
will you add, or disagree if you disagree. What we want to avoid
is repetition. If your lead member has given a view, then we would
like any additional information to add or be a point of disagreement,
if there is one. Is that helpful? Then we can move on. I am just
going to begin by reminding you of something that you all really
know, that the European Commission's Communication was published
against the background of a major shortage of organs across the
European Union. I do not need to say that to your kinds of groups;
that is your concern but the UK is less well-placed than some
other countries, with a donor rate of 12.8 million a year compared
with 35.1 million in Spain, for example, and we have heard a good
deal about the Spanish system. All the patients' organisations
that we have heard from agree on the shortage of organs available
for donation and that this needs to be addressed. So the question
which you have is that, as a representative of patients who may
need to receive a transplanted organ, what do you see as the major
obstacles to sufficient organs being available for transplant
within the UK? We will then later come to the EU issue.
Mr Hollobone: The view of the Jeanette Crizzle
Trust is that a large number of people are aware of organ donation
but that awareness is not translating itself into people actually
coming forward to register their interest as a donor. I am registered
as a bone marrow donor, I also have the NHS donor card but, as
we all know, far too few of our fellow citizens go down the route
of actually getting themselves on to the register. I think there
are a number of reasons why people are not taking that next step.
People are afraid of the potential consequences. Bone marrow donation,
for example, is a painless procedure but if you stop most people
in the street and say "Do you think bone marrow donation
is a painful or painless procedure?" I think most people
would take the view that it probably could be quite painful, could
be quite time-consuming, could be debilitating over a period of
days. People misunderstand how relatively straightforward it can
be to be a bone marrow donor. The Trust takes the view that if
we are to get more people to bridge that gap between being aware
that donation is possible and actually registering as a donor,
the important thing is to educate people. The Trust has had success
in persuading the Government to launch what is called the "Give
and Let Live" donor education awareness programme which is
being launched across sixth forms across the country. Our worry
is that there is not enough commitment by the Government to that
programme but were there sufficient commitment, it would mean
that in 10 or 20 years' time every sixth former in this country
will have been briefed about how easy it is to become a donor
and the benefits to the greater good of the community by them
so doing.
Q149 Chairman: Do either of
the other witnesses want to add to that or take a different perspective?
Ms Bentley: I agree with the points made. Also,
in our society in particular, there may be a culture of reluctance
to talk about death and the emphasis in society is on actually
remaining youthful and putting it off. Education is fine, and
then you have to encourage a culture which finds it easier to
discuss the issues that are obviously going to be very important
when that decision has to be made. I think too it is extremely
traumatic for relatives currently if they are in a position where
they are asked if their deceased relative can give their organ.
That is a very difficult thing and may hinder the number of organs
that are currently given. The other thing is the medical framework:
is the medical framework adequate to actually make sure that potential
donors are found? In other words, are there enough intensive care
beds, transplant surgeons? Are doctors trained to see the potential
which arises? Are there enough transplant coordinators? I think
it is a combination of things.
Mr Thomas: I would just like to quote from last
week's Organ Donation Task Force to answer that, which said "Currently
organ donation is not adequately performance-managed or funded.
Key elements such as organ retrieval and donor transplant coordination
are heavily reliant on a variety of ad hoc arrangements."
I think that captures it very well. It went on to give full support
then to the existing structure, which I found interesting, with
praise for the trust divisions and the UKT but then it added "It
is neither stable nor fit for the future", which again were
interesting words to use.
Q150 Lord Kirkwood of Kirkhope:
That is a very helpful start to the evidence and thank you for
that. There are major obstacles to what you are trying to do.
Can I turn that round? Is there any significant common use of
the internet and some of these new technologies which are developing?
Mr Hollobone was talking, interestingly, about targeting sixth
formers. That generation is a lot more literate than perhaps some
of us. Is there a common standard website? Do you feel there is
enough done in terms of the inter-communication between the work
that you are all doing on different sides of the park, as it were,
that makes this not an obstacle in future to the provision of
the services that we are trying to make available?
Mr Hollobone: My Lord Chairman, I understand
that the Give and Let Live donor awareness programme does have
a website component and that would help to address the main reason
that the Trust have identified for donors not coming forward to
register, which is lack of information. The main reasons that
we have discovered why people are not translating their awareness
of donation into becoming donors themselves are, in order: lack
of information, not a high personal priority, "I am frightened
to do it", and "Concerns over health risks for me".
Q151 Baroness Gale: My question
is related to the quality and safety standards of organs for transplantation.
What are your views on the issues from a patient's perspective
of the benefits of an EU Directive on organ quality and safety,
and how would you think the benefits of the imposition of high
standards of quality and safety should be balanced against a possible
reduction in the supply of organs for donation?
Ms Bentley: If there is to be an EU pool of
donors and organs, it is essential that there are the highest
possible standards set and agreed for quality and safety of organs.
As patients' trust is crucial in these things, I think patients
would want that to be the case. That is extremely important. Of
course, the ideal aim must be to get the most high-quality organs
for patients. The EU Directive would make this more likely to
happen. The issue that you would have with the public possibly
is that they would need to be reassured that how that Directive
was actually implemented across states was uniform, so they felt
that the same standards were actually on the ground being reached
in the different Member States. The important thing for patients
too in this is that the safeguards of quality and standards are
set for the whole route of the organ, so it is how the donor is
screened, wherever that might be in the EU; how the organ is actually
removed; how it is preserved; and how it is transported before
it then gets to the recipient. As long as the public or the patients
would know there are high standards of quality and safety for
each of those stages, they would be more likely to support something
like that given that it is coming possibly from a different place.
Q152 Chairman: Can I just
ask you a question about that? We have had witnesses who have
been concerned about the possibility of what they call "gold-plating"
because there are so many people who are desperate for organs
that they will go to other places anyway to achieve this. How
do we get this quality standard with enough organs and at the
right quality levels so that we do not exclude what is possible
and available rather than the absolute perfection?
Ms Bentley: I think there has to be a baseline
of quality and safety below which it is either dangerous or unadvisable
to go but there must be room for clinical judgement to be made
because there will be patients who will have maybe a rare tissue
that is difficult to match and their likelihood in any situation
of finding an organ is going to be hard. They may well, having
talked to their clinician, be prepared to accept a marginal donor,
a less than the highest quality organ, in order to get some quality
of life as a result, and I think that must be available for patients.
In terms of safeguarding it so it is not an abused thing, it is
going to be very difficult across the EU for reassurance to be
given to patients that clinical judgement will be as reliable
or the same across Member States. I think that might be a real
issue. The only way—and this is just a lay suggestion—would
be that if you have that baseline, that sort of gold standard,
it has to be documented if any exceptions are made to that—that
may well be a way round it—that could be monitored and would
then be looked at in the context of organ donation generally but
that clinical judgement is very important to patients and may
be vital to some transplant patients.
Q153 Lord Lea of Crondall:
It is something I have not thought about, but now is the moment,
I think. You mentioned a hypothetical conversation between the
patient and a clinician. Would you be happier, given facts on
the ground, "This is your only chance", sort of thing,
to have not a substandard organ but did you say an organ from
a marginal donor? I cannot imagine that conversation. How wide
can that conversation go? Would you object to a donor who came
from England?
Ms Bentley: No, I am not talking about the donor
at all but the quality of the organ.
Q154 Lord Lea of Crondall:
How wide could that conversation go? I did not know there were
conversations on this point that you are making between a patient
and a clinician about the particular organ that could be coming
their way.
Ms Bentley: I am just thinking in terms of if
a patient has a lot of difficulty in finding an organ, it may
be suggested to them that they could consider having an organ
that was maybe less than the highest quality organ.
Q155 Chairman: You did say
it was probably a very specialist area.
Ms Bentley: This would be all part of the consent
between the doctor and the actual transplant patient. That was
the context in which I was saying it. Nothing to do with the donor,
where it came from, but the actual quality of the organ as it
would affect that patient. They check for transmissible diseases,
et cetera. It is on that level.
Q156 Lord Lea of Crondall:
So it is a category of organ that you could be offered or a standard
of organ that you could be offered. It is not a question of someone
saying "We have got an organ on the shelf here"?
Ms Bentley: No. I am not a doctor so I cannot
really—
Q157 Lord Lea of Crondall:
I am very much a layman, as is very obvious.
Ms Bentley: I am just mentioning it as the clinical
... If the doctor suggested there was an organ available for a
patient that maybe did not meet all of the standards, the patient
would then have the flexibility to talk it through with the doctor.
Q158 Baroness Neuberger: Can
I perhaps just tease it out a little bit further? I think you
are making a very interesting point. Where there is obviously
the discussion between the very specialist doctors in teams and
potential patients and there is a shortage of organs, wearing
your hat, chairing this committee, have you looked at questions
about how one might standardise any of that, given that is part
of the clinical relationship, really hard?
Ms Bentley: No, we have not looked at it in
detail.
Q159 Chairman: Could I ask
if either of the other witnesses want to add to this?
Mr Hollobone: I would like to make a contextual
point, my Lord Chairman. I think the view of the Jeanette Crizzle
Trust would be that in large respects this is an issue because
there are not enough donors. If you make people aware of how straightforward
it is to become a donor and what the benefits are of being a donor,
and you increase the number of potential donors, this issue in
effect solves itself because there will be more donations out
there to which people have access. The reason that the Trust was
established was that Mrs Jeanette Crizzle, who died of leukaemia,
was not able to find a suitable bone marrow match.
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