Examination of Witnesses (Questions 120
- 139)
THURSDAY 13 DECEMBER 2007
Mr Chris Rudge, Mr Gareth Jones and Ms Triona Norman
Q120 Lord Lea of Crondall:
In my case, I have a donor card and we are members of the EU.
In the European Commission document—which, if I may say,
so is rather well written, carefully considered, has some very
good benchmarks in it—is there not going to be some prima
facie advantage—not being just dog in a manger about
it—of seeing how it can be endorseable like my driving licence?
My driving licence is not ipso facto a European driving
licence but it has a European validity, has it not?
Mr Rudge: I can happily go along with the view
that your views, as represented in this country, should equally
be valid in any other European country. That is the principle
you are stating and I would absolutely go along with it. I cannot
go along with introducing yet another way of recording your wishes.
We already have a very good way of recording wishes in this country.
People know about it. Fifteen million people have put their name
on the Organ Donor Register. Why confuse them with yet another
thing.
Lord Lea of Crondall: I am sorry, but
we need analysis of what we would do to make it work.
Q121 Chairman: With respect,
Lord Lea, we are going to have to move on because time has moved
on and we have a lot to cover. I think Mr Rudge is suggesting
that we are not at that stage in terms of different European legislation
in different countries and that the wishes you might have expressed
might not be the ones you find are being carried out if you find
yourself in another country.
Mr Rudge: I think there is a risk of that.
Q122 Chairman: We have not
reached that stage in Europe yet.
Mr Rudge: I think there is a risk of people
perceiving that that is thought to be the case.
Q123 Chairman: And perception
is a large part of what is going to happen.
Mr Rudge: A very large part, yes.
Chairman: Could we move on to Lady Gale.
Q124 Baroness Gale: My question
is on improving the supply of organs for transplantation. Bearing
in mind the much higher organ donation rate there is in Spain
than there is in the UK, what is your view of the relative importance
for improving the supply of organs for transplantation of (a)
improving organ donation and transplantation services and (b)
switching from a system of opting in to opting out or presumed
consent? If improvements are to be made to organ donation and
transplantation services, what new requirements do you think there
should be for professional training?
Mr Rudge: Spain does have an organ donation
rate that is unique in the world. Nowhere else in the world comes
close to matching the Spanish donation rate, although Northern
Italy and one or two other areas of South America have made quite
marked improvements in recent years based on implementing the
Spanish model. What is more important than what I think is what
Rafael Matesanz thinks. Rafael was the architect of the Spanish
model. He was appointed in 1989 and in 1989 Spain had the same
organ donation rate as this country did. Now it has a donation
rate that is three times greater. I have worked very closely with
Rafael Matesanz. I write chapters with him. I have the embarrassing
difficulty of speaking at meetings immediately after him, so he
describes the Spanish success and then I have to describe the
UK's failure. Rafael would say himself, and has said in writing
and in public, that it is the Spanish system and structure and
model that is important and not the law. The law in Spain was
exactly the same in 1989—when they had the same organ donation
rate as we did—as it is today. The changes that have occurred
in Spain, the threefold/two-and-a-half-fold increase in organ
donation in Spain, have occurred without changing the law. They
occurred because Rafael changed the system. He did all the things
I mentioned earlier. He changed how they identify potential donors
and notify them to the co-ordinators—the right number of
co-ordinators in the right way, with the right amount of time
and the right experience—and everything else I have already
mentioned. There are one or two other comments, while we mention
Spain. I would emphasise this point that I believe it is the structure
rather than the law. Spain pro rata has three times as
many intensive care beds as we have in this country and it has
three times as many donors pro rata. Spain has three times
as many organ donor co-ordinators as we do in this country and
it has three times as many organ donors. I do not think those
two things are a coincidence. I think the law clearly plays a
part. I would not for a second understate that but I do not think
anything will be achieved until the system is right and I do not
believe we have the right system in this country.
Q125 Chairman: You are painting
a very clear picture that structure plays a very important part.
I am going to move on now because time is moving on.
Mr Rudge: Perhaps I could very quickly say,
My Lord Chairman, that there is a great need for training. I think
it is already available and can be improved and implemented. I
do not think it is a restricting factor.
Chairman: Lady Young is going to deal
now with organ trafficking.
Q126 Baroness Young of Hornsey:
You have already alluded to organ trafficking. How serious do
you think the problem of organ trafficking is across the EU? Do
you envisage that there is a role at the EU level to monitor and
combat any growth in the problem of organ trafficking? If it is
not a substantial problem in the EU, do you see any other issues
arising out of donation tourism and/or cross-border donation?
I would also be interested to know whether you feel there is a
qualitative distinction to be made between trafficking and tourism?
Mr Rudge: I would agree that within the European
Union people trafficking for organ donation is a very minor issue
in terms of numbers and activity. I am not aware that it happens
at all within the European Union. I am very well aware that it
happens elsewhere in the world. I think it is clearly unacceptable.
As Triona has already said, virtually every EU country has legislation
that prohibits organ trafficking. Several of us have worked very
closely with the World Health Organisation over recent years and
months and the World Health Organisation's guiding principles
set out very clearly that organ trafficking and so on are unacceptable
and provide a strong framework for other countries to work within.
It is essential that we do not drop our guard because I do believe
organ trafficking is a horrible thing. It is very important for
countries to have appropriate legislation and appropriate monitoring
systems to ensure that it is not happening. The experience varies
across the EU. Obviously some of the more recent countries have
had less experience of this sort of legislation and these sorts
of monitoring processes. I think the EU can play a role in spreading
good and correct practice, both in legal terms and in structural
terms, to monitor what happens.
Q127 Chairman: What about
this distinction between tourism and trafficking?
Mr Rudge: I think we could spend a long time
discussing whether there is a difference or not. Some patients
from this country travel to other countries for a transplant quite
legitimately and properly because that is where their families
come from. I have worked for many years in the East End of London
where there are very large Bangladeshi and Pakistani populations.
Those patients who are resident in this country have families
in Asia and they travel to Asia to have a kidney transplant from
their brother or sister or mother and father, and that is all
right and proper. I do not really call that transplant tourism.
I call that right and proper, good medicine, but it happens to
be patients from different countries having a transplant.
Q128 Chairman: We have heard
of people arriving in this country and then having to have treatment
for what are poor quality organs. Do you have any evidence of
that? What are the consequences of it?
Mr Rudge: I have a limited amount of hard evidence
and I have some personal experience. The hard evidence is that
UK Transplant asks all the transplant programmes in this country
to register with us the patients who have originated in this country,
gone abroad for a transplant and then returned to this country
for their follow-up care. We receive between 20 and 30 registrations
a year. I cannot guarantee that that is comprehensive, because
I do not know of the patients who are not registered with us and
we have no way of enforcing that, but I believe it is pretty reasonable.
Twenty or 30 patients a year go abroad, have a transplant and
come back to this country. The outcome for those patients is marginally
less good than it is for patients who have a transplant in this
country but not dramatically so. But of course I am only referring
to those patients who go abroad, have their transplants, survive
and then come back to this country. I do not have any information
about individuals who go abroad and have an unsuccessful transplant
and perhaps die and therefore do not come back.
Q129 Chairman: It is not a
huge problem.
Mr Rudge: It is not a huge problem. Personally
I see these patients in the clinic that I do in the Royal London
Hospital every Tuesday morning. They do very well actually, if
the truth be known. The problems associated with this sort of
transplantation are real but they can be exaggerated.
Q130 Baroness Young of Hornsey:
The next question is about raising public awareness and ethical
concerns about organ donation. To what extent do you think that
measures to increase public awareness and knowledge could be effective
in getting more people willing to place themselves on the register?
Which measures do you think might be the most effective?
Mr Rudge: Awareness of organ donation amongst
the public is crucial. There are currently nearly 15 million people
who have put their name on the Organ Donor Register and that number
is rising by over one million a year, but of course it is still
only representative of 25% of the population. As with everything,
there is a lot that can be done without spending enormous amounts
of money on advertising but large amounts of money spent on advertising
are important. I think we need to make it easier for people to
put their names on the Organ Donor Register. We are forever trying
to come up with ways of making it easier. People can put their
names on when they have a driving licence, when they change their
general practitioner, when they get an Advantage Card from Boots,
and in a wide range of other ways, but we are always looking for
more ways of making it easier. Media interest undoubtedly has
an effect. It has a short-term sudden effect. Sir Liam's report
and the publicity surrounding it in the summer had an effect.
I think we need to work more with schools. UK Transplant and NHS
Blood and Transplant launched a schools educational pack in September
this year called Give and Let Live. That has been made available
to secondary schools. About 1,000 schools so far have taken up
that offer and I think more are doing it all the time. I think
it is a very wide-ranging question and there is not one answer.
I think every possible way of raising awareness of organ donation
and the need for transplantation has to be grasped. Some of that
can be done relatively easily, some requires money.
Q131 Lord Trefgarne: We are
anxious to ascertain in the course of our inquiry the expert's
view on when death occurs and therefore after which it is proper
to take the organ. We did talk to Sir Liam about this last week
but we would be grateful to hear your view, particularly as you
yourself have been a transplant surgeon. Are there any circumstances
when we do not take an organ, even from a consenting patient;
for example, very ill patients?
Mr Rudge: Yes. The criteria for the diagnosis
of death, either by brain-stem death tests or after the heart
and respiration have ceased, are crystal clear. They are published
in the intensive care society guidelines and the Academy of the
Royal Medical Colleges is about to update their existing guidance
on the diagnosis of death. I do not believe there is any uncertainty
about knowing whether somebody is dead or not.
Q132 Lord Trefgarne: Would
we understand that documentation or some of it? Could we see it?
Mr Rudge: I can provide it for you. It is technical.
Let me answer your question in another way. In practice it is
really the family of the organ donor who have to be satisfied
the person is dead. They understand that. They say to me, "He
died two days ago when his car hit the tree." They know the
person is dead. But increasingly they are being taken along to
the bedside when the tests that are carried out are being carried
out. They see the body not breathing when it is disconnected from
the ventilator; they see that the eyes are dead; they see that
there is no response to anything. It is like looking at a doll.
Families see that and families understand that that person is
dead.
Q133 Chairman: Does that answer
your question?
Mr Rudge: It is a short answer
because of time.
Q134 Lord Trefgarne: I accept
what you say about that because I had the same with my mother
back in the summer. She was too old but she wanted to give her
organs.
Mr Rudge: The answer is that there are clearly
criteria that allow organs to be suitable or not suitable. It
depends on the organs. Age is one of them. Things like HIV, CJD,
cancer, other infections may or may not make the organs suitable
or not.
Q135 Baroness Young of Hornsey:
There is an important question on this issue of the mismatch between
the supply and demand of organs particularly for black and other
ethnic minority groups. I am wondering why there is that mismatch,
because it is so significant. What is it possible to do in terms
of preventative work with those communities? What is it possible
to do in terms of working with those communities to lower that
disparity? Are there issues across the EU with other ethnic minority
groups and what actions, in general, do you think could be taken
to address this situation? I am aware of the time, so perhaps
if we are not able to address this all today you could write in.
Mr Rudge: I certainly will. Perhaps I could
give you three or four little bits of information and then Triona
may want to say something also. At the moment 23% of the people
who are waiting for a kidney transplant are from black and minority
ethnic backgrounds; approximately 8% or 9% of the population are
from that background and only 3% of organ donors come from that
background. There is a clear mismatch. Why are so many people
on the waiting list for a transplant? Sadly, the incidence of
kidney failure is three or four times greater in patients from
an Afro-Caribbean, African or Asian background than it is amongst
Caucasian patients, so the need is three or four times greater.
That is an absolute problem, because, even if the donation rate
were the same amongst the groups, the need is three or four times
greater. However, it is even worse than that because the donation
rate is low. It is low because if the potential donor is—and
forgive me for being so simplistic—white, 35% of the relatives
refuse consent for organ donation. If the potential donor is from
any other background, other than white, 75% of the relatives refuse
consent for donation. There are not enough donors from those groups
and there are far more patients who need transplants from those
groups, so the gap is enormous.
Q136 Baroness Young of Hornsey:
Why are there so many more instances of kidney failure? Is there
a quick answer to that or is it very, very complex?
Mr Rudge: It is complex. It is the subject of
a lot of work and a lot of research and a lot of thing in preventative
medicine in particular. There is a group in north-west London
who are doing all sorts of things out in the community, trying
to get people walking down the street to have their blood pressure
measured or their urine tested for protein.
Q137 Baroness Young of Hornsey:
Is it blood pressure? Lifestyle?
Mr Rudge: It is blood pressure and diabetes.
Q138 Lord Lea of Crondall:
Presumably under the opt-out possibility there is a reduction
in this mismatch of people saying, "I don't want my kidney
to go there." Would that be logically an inference you would
draw? How would the scheme work if that would not be a reasonable
inference?
Mr Rudge: I am sorry, I am not entirely sure
I understood your inference.
Q139 Lord Lea of Crondall:
The inference being that the difference between 25% who say, "I
am happy for my kidney going to a white person" but 75%—
Mr Rudge: No, I am sorry, I did not say that.
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