Examination of Witnesses (Questions 320
- 339)
THURSDAY 28 FEBRUARY 2008
Dr Rafael Matesanz
Q320 Lord Lea of Crondall:
Is there anything else that you would like to say on this outstanding
question? We are talking about question six.
Dr Matesanz: Question six: "what are your
views about the potential advantages and disadvantages of an EU-wide
unified single organ sharing scheme." I think that there
is no place for a unified single organ sharing scheme—no
place at all. No place at all because I think that the only possibility
to share organs is for small countries that are very close countries,
and for specific organs, for a specific situation. For instance,
for a small country for certain urgent patients it is very difficult
to find an adequate donor if you do not have a large pool of patients.
For instance, it would be impossible for Ireland to find adequate
donors outside of Great Britain. For instance, Portugal and Spain
have established an agreement for super urgent livers, but just
for super urgent livers and nothing more. The European sharing
organisation, which is basically Eurotransplant, was formed many
years ago because they were very close countries with very good
communication and so they can share some of the organs, but for
a country with 45 million people, like Spain, the exchange of
organs with other countries is less than 1% of the organs. We
have no need—the only organs that are really shared at this
moment in Europe are organs which cannot be transplanted in our
own country. For instance, every time that we have an organ that
we cannot transplant: a very small heart of a just born baby or
an intestine, or a group AB, we offer it to other countries—we
offer to France, to the UK, to Italy, to closer countries. But
there is no sense, for instance, to generalise a scheme for exchanging
livers because if I sent a liver to Stockholm and then from Stockholm
to Rome and from Rome to London it takes a lot of money and a
lot of time and so on; so, no.
Q321 Chairman: You are saying
to us that there are opportunities to exchange in rare circumstances
but this is done better by professional contact?
Dr Matesanz: Not professional but organisational
contact. No, no, it is strictly forbidden exchanging organs from
hospital to hospital, but: hospital of country A --> organisation
of country A --> organisation of country B --> hospital
of country B.
Q322 Baroness Morgan of Huyton:
Can I ask a supplemental question on that? One of the issues that
have come up in previous sessions we have had has been a belief
that it is easier to encourage people to agree to donation the
closer to home it is. In terms of what you are saying, you are
obviously saying that it is more efficient and it is better value
for money and donor organs can usually be used in your own country
anyway so why would you go further afield, but do you think that
people also are more willing to donate relatives' organs if it
is closer to home as well?
Dr Matesanz: I have told you before that when
we started with this system, Madrid and Catalonia—Madrid
is six million, Catalonia is seven million, so they are big regions
with a lot of people—were at the highest, but not now. When
you professionalise the system you realise with respect to organ
donation that "big is not beautiful"—much more
efficient are the smaller organisations. So you would need—I
would not say a big organisation but a middle sized organisation
for sharing organs; but small for the procurement because you
can control them much better. The regions with the highest organ
donation rate in Spain are the smaller regions. For instance,
in the north of Spain is Asturias, we had million; Cantabria,
half a million; the country of Basque we had two million; Rioja,
half a million. So the smallest regions are those who reach the
highest organ donation rate. It is very difficult to control what
is happening in every hospital in a very big organisation. And
for sharing organs the philosophy 30 years ago was the bigger
the pool the easier to find a good match. That was the philosophy
for Eurotransplant, which was true 30 years ago but it is not
true now because the drugs have been changed very much. So that
is the reason that you can do a renal transplantation between
two people without any genetic relationship, but that was not
possible 30 years ago but is possible now. So the need to find
a good match does not exist now or is very relative. So for a
country like the UK you do not need anything at all from outside,
and the same for Spain and the same for Germany and the same for
France. Of course if you want to have an exchange that is okay,
but only on a voluntary basis and only for a specific patient,
for an intestine or for very small children who need a heart where
it is very difficult to find an adequate donor in the country.
Q323 Chairman: Dr Matesanz,
we have to move on but just before we move on what system do you
think should be in place for those specific rare cases?
Dr Matesanz: I think it is very simple and not
very different from what it is now in place. The organ sharing
organisation and organ donation organisation in my opinion should
be the same, in contact by mail or fax or whatever, with other
European organisations, and whenever there is a special need or
special offer there is no problem to send it to the organisation.
That is the way in which we are working now.
Chairman: Thank you very much. We will
move on to a different topic with Lady Neuberger.
Q324 Baroness Neuberger: Dr
Matesanz, I should have declared an interest before—I have
a brother in law who is quite well known in the transplant field,
James Neuberger. For the record we have to say that here. You
may have noticed that the Chief Medical Officer here in the UK,
Sir Liam Donaldson, has been recommending that we move to a very
different system of consent and that it goes to an "opt-out"
system. We have heard very different evidence actually, largely
in this inquiry, but the Chief Medical Officer has come out with
that and there has been a certain amount of political support
for that. So we are really interested in knowing from you what
public attitudes are to donation in Spain. You have said a little
bit about that from Rioja, which has been very interesting, about
the smallness and the localness, but could you tell us whether
the attitudes have changed recently and, if there has been this
enormous change—which by the success of your programme it
sounds as if there may be—how do you explain the change
in attitude?
Dr Matesanz: That is a very important question
because it is so important whenever you are trying to do something
in any country or in any region it is as important what to do
as what not to do, as I said before. I will tell you something
very interesting, but first of all I have to say that the different
laws that are in Europe or in other countries of the world mean
nothing in respect of organ donation—nothing. It is true
that you need a law but you need a law in which you define what
is brain death, how to distribute the organs—all these things—how
to approach the family, who should give the consent, who should
give the legal consent in accidents, and so on. Theoretically
there are two kinds of law—the presumed consent and the
expressed consent (opting out and opting in). At the end, as far
as I know, in all the European countries—that may not to
be the case in very far away countries like Singapore or something
like this -in Europe and in America and Australia, which is more
or less with the same culture, with the same view of life, there
is no country in which the family is not consulted, not approached
before. So that means that at the end there is the problem of
the property for the family, for the Catholics, for the Protestants,
and all the European cultures. I do not know of any country in
which the family is not consulted. In Spain we have a law, which
is from 1979, (so we have almost 30 years with the same law, and
being in Spain with the same law for 30 years it means that it
is a very good law!) So it is a presumed consent law and when
we started I was working at the hospital as a nephrologist and
in Spain, as in other countries, the nephrologists were the first
who asked the family for the kidneys—not for the other organs
but for the kidneys to transplant our patients. I remember that
during the first years of application of the law we tried to apply
such a card, "You are a donor if you do not state to the
contrary during your life". But in fact in Spain whenever
there is a non-medical death, let us say an accident or anything
like this, you should go to the judge, ask permission of the judge
and the judge is the person who gives the authorisation. And the
judge started to ask the nephrologists for the written permission
of the family because they established that it was the only way
to know what the feeling was of the person who was dead five minutes
before death; so, at the end it is the family who is saying. So
opting-in, opting-out in my opinion means nothing. It is true
that whenever there is a country in which this problem of donation
starts to be discussed the first thing is that there is somebody
who wants to change the law—it has been happening all the
time; it has been happening in France, happening in Argentina,
happening in Brazil, happening in Singapore and in Belgium. At
the end what is really happening is that during the first years
of changing the law the number of organ donors started to rise,
but probably not because of the change in the law but because
of the expression which is very opportune, very good, which is
"moving the water". Talking about donation and everybody
started doing things, but after that ... That is what is happening
in Brazil, in Argentina, in Singapore and practically in all these
countries at the end the families always consulted. You have some
figures here in this document, which are very interesting and
it is the Euro barometer. The Euro barometer is very interesting.
I do not trust such a kind of general polls, but it is true that
the countries with the highest disposition of the population to
donate organs are the lowest in real donation. Malta and Sweden
and countries like that where the real organ donation rate is
very low. In the UK it is always higher than Spain, as you realise
here—Spain is very low. Another thing that is very important,
we have a very good poll which put the same question to the population
at the beginning of this story in the early 1990s—1992 and
1993—and in 1999 and 2006, and we asked the same question
to the Spanish population, without any explanation, "Would
you be willing to donate the organ?—Yes-No-Do not know."
At the beginning there was 58%, in 1999 57% and in 2006 58%—the
same. During this period we went from 500 donors to 1,500 donors.
And, most important, in Latin American countries the family refusal
rate—which is more or less the index, which is very valuable
but it is very difficult to obtain because not all countries take
the family approach of the family interviews and so the recording
of family refusal is not easy—is higher than 60 and 70%.
But we have now in Spain a Latin colony which is very, very high—for
instance, there are more than 600,000 from Ecuador and more than
half a million from Colombia, and the family refusal rate of Latin
Americans in Spain is just the same as the Spanish population.
Even more the British; the highest colony in Spain of non-Spanish
not born in Spain are British, living in the Mediterranean, in
the Balearic Islands, in the Canary Islands and so on.
Q325 Lord Lea of Crondall:
I am sorry, the highest doing what?
Dr Matesanz: The highest colony, the highest
group.
Lord Lea of Crondall: Yes, but did you
say that you knew that the British were higher or lower than others
in saying no.
Q326 Baroness Neuberger: Dr
Matesanz has not said yet.
Dr Matesanz: In the UK your family refusal rate
now is about 40%, but in Spain we have the data for 2005 and 2006
and we know that there were more than 100 to 120 British who came
to the state of brain dead and it is very curious because all
say yes—all the British who were asked in Spain finally
say yes. So the family refusal rate of British in Spain is zero.
What is important in this situation is that you cannot change
the mentality of the whole country; that is impossible—you
need many, many years, many, many actions and so on. You should
concentrate the thoughts of what is happening specifically at
the moment when a person becomes brain dead in the intensive care
unit, and you should have a very good trained professional who
is trained in a very professional way. What is happening with
non-Spanish is that we have specific translators—of course
to English but also to German, to Swedish, to Arabic, to Chinese
or whatever disposition of the coordinators, so we approve them.
Q327 Chairman: So it is organisation
and leadership.
Dr Matesanz: Organisation is 100%.
Q328 Baroness Neuberger: And
leadership.
Dr Matesanz: Yes.
Chairman: We are going to have to move
on to the time and you have once or twice alluded to different
ethnic groups and Lord Eames is going to ask questions in this
area.
Q329 Lord Eames: I, absolutely
like the rest of my colleagues, am fascinated by your presentation,
and I know that you have touched a good deal on this question
of immigration and the various percentages making up the Spanish
figure. Is there anything else that you could say to us in relation
to any differential between supply and demand with ethnic minorities
and so on? You mentioned North Africa specifically earlier on
in answer to my colleague, but is there anything you could share
with us because immigration is 4.1 million or something like that;
and over here it is obviously a major thing as we look at the
EU. What else could you say to us about the variation within the
ethnic minority groups?
Dr Matesanz: Immigration in Spain is a phenomenon
which is quite different to what is happening in the UK, France
or Germany because we have very, very strong immigration but very
recent immigration. We had no immigration 30 or 40 years ago—we
were emigrants—but now we have received during the last,
let us say, ten years a lot of immigrants and at this moment it
means about 10% of the Spanish population are people who were
not born in Spain. So the greatest colonies are European, west—not
specifically immigrants but British, German, Swedish who came
to live in the Mediterranean; and eastern—Romanian, Bulgarian,
Polish who came to work; Latin America, of course; and then Africa,
Northern Africa, Islamic countries, and sub-Saharan countries.
Then there is a much smaller proportion from Asia. The Asiatic
immigration in Spain is Chinese but not very many. So the situation
is Europeans, eastern and western are donating at the same level
as the Spanish—at the same level. We realised about this
new situation about three or four years ago, and the first thing
that we did is to summarise how many percentage of donors were
not born in Spain. At that time the percentage of donors in Spain
not born in Spain is just 9%, so more or less the same as the
weight of this population. But this does not mean that everybody
donates at the same level because I have told you no problem with
Europeans; no problem with Latin Americans but real problems with
people who come from Africa specifically for religion—the
Islamic religion is the main problem. We have donors from the
Islamic religion and what we have done is two things: we provide
the coordinators with all kinds of items in the different language
and we contacted the kind of social workers who work at a local
level in Spain from the different ethnicities, in the groups,
and whenever there is a potential donor from China, from Romania
or from Northern Africa we call these people and try to approach
the family in this way. That is not very different from what I
know that they are doing now in the United States with the minorities
because they realised this problem with the minorities many, many
years ago. We have started now to have donors from the Islamic
religion; but Chinese is very, very complicated but it is a very
small problem in Spain, so it is not really a problem. Our greatest
source of immigrants is Northern Africa and Latin America.
Q330 Lord Eames: Are there
any specific lessons—or is it too soon to say it, given
the figures you have mentioned—you have learned about the
approach to some of some of these ethnic groups?
Dr Matesanz: Yes. For me what is more important
that the results that we are getting now in Spain are much better
than what is happening with these ethnic groups in their own countries.
So we have not changed the mentality of these people but there
are probably two things: they are receiving good healthcare, which
is probably not the case in the country of origin—in Latin
America and so on. Then the fact that we are approaching them
in their own language and trying to conserve with their own attitudes
and their own way to understand life, and I think this is very
positive. Then it is the same thing in other European countries
but it is not the same in the country of origin, that they had
the same opportunity to receive organs as the Spanish because
the opportunity for any people who comes to Spain to live in Spain,
whatever your region is you have the opportunity to receive organs
the same. So our philosophy is that everybody should donate because
everybody can receive.
Q331 Chairman: Do you have
any evidence that says that it is not necessarily the cultural
group but the socioeconomic position of some of those groups;
that it is the poor who may not give consent?
Dr Matesanz: We have not seen many differences
from the socioeconomic different groups in Spain. In fact with
the immigrants there is really little difference. It is true that
when you are doing polls it is much easier to receive a positive
answer from the higher socioeconomic group, but at the end real
donors is what makes a difference. It is very important that when
we started with the system in the southern region of Spain, Andalucìa,
the organ donor rate was very low—it was eight, nine per
million and nothing more. The explanation—and "explanation"
in brackets—was because of the Catholic religion that this
was failing in Andalucìa. Now Andalucìa is 34 per
million. For instance, one of the places that I have worked besides
Spain has been in Italy. I worked for three years in Tuscany,
in Florence, and in Tuscany the organ donation rate was nine or
ten. We established a system which was very similar to the Spanish
and now they have 42 per million. But in Italy in the northern
regions the results are fairly good at this moment—it is
not only Tuscany—they have practically taken the Spanish
system with the national regional hospital system, with medical
doctors and so on, and are very, very close—in the northern
part of Italy in Veneto, Emilia Romagna, Tuscany and so on. But
in Italy there is a real difference with the south because, for
instance, in the south, in Sicilia the organ donation rate is
five, six in Catania in the region of Calabria and so on. So the
question is: what is the real difference between Italy and Spain
because they are such close countries with such a close culture?
In my opinion in Spain there is not a real difference in healthcare
between Madrid, Seville, Bilbao, Barcelona and so on. There were
30 years ago but not now. But in Italy it is not the case; Italy
is very different from the south to the north, so that makes a
difference in the number of ICU beds, in how the hospitals manage.
In fact one of the things I learned in Italy is that there are
thousands of patients coming from the south to the north; in Spain
there was something like this during the 60s or 70s but not now;
there is nobody now who comes from Andalucìa to Madrid
or to Barcelona—nobody. So that makes a real difference
in order to understand what is happening why the organ donor rate
can increase in some places and why in others it is very difficult.
For instance, the organisation in Uruguay, Uruguay was a country
with five or six donors ten years ago, so we took people from
Uruguay, we train them, we send them there and at this moment
there are 26 donors per million. In Argentina, which is a very
important country with 40 million people, we totally changed the
system at the beginning of this century—it was a very centralised
system, which was more or less like the French one, and we changed
it to a very decentralised system with coordinators. So Argentina
went from six to 12 donors per million.
Q332 Lord Lea of Crondall:
I would like to take advantage, if I may, while Dr Matesanz is
still with us, to say that as part of the British debate, in what
he has been saying in the last minutes in particular, have I understood
you correctly I thought at one point you said that donor cards
etcetera, exaggerate and do not mean a thing; it is the on the
spot, the family itself and so on. We have had evidence that very,
very few families contradict what a person has said on the donor
card so if we do have a gap of 1000 people a year dying unnecessarily—let
us take any number you like—and we want to do something
about it you are not suggesting that increasing the number of
people with donor cards is not making any difference, are you;
or did I misunderstand you?
Dr Matesanz: No, you understood perfectly. Publicity
campaigns, donor cards, such kinds of things I do not think they
are bad measures but I think that the cost / effectiveness of
these measures is very, very high. In Spain in this poll, as I
told you before, in the early 1990s there was 6% of the population
with a donor card, at the end of the 1990s there were seven, and
in 2006 it is 8% of the population with donor cards, so practically
the same; so the possibility that a person who died in intensive
care who has a donor card is very, very low. So if you invest
a lot of money in providing donor cards to the population of course
you are investing money and it—
Q333 Lord Lea of Crondall:
You do not have the gap that we have 1000 deaths unnecessarily.
Dr Matesanz: Not at all. For giving visibility
to a project donor cards can be good. For instance, in a country
you are doing something, or at a European level there is the proposal
to do some kind of European donor card, and I say I do not think
it is useful but it can give visibility to the project, but you
should realise you will spend a lot of money.
Q334 Chairman: Really what
you are saying, Dr Matesanz, is that you should invest the money
in the hospital system and in the skills and the training and
the process.
Dr Matesanz: Sure.
Q335 Chairman: That there
is nothing wrong with having a donor card.
Dr Matesanz: There is nothing wrong.
Q336 Chairman: It may raise
attitudes but it will not actually help unless it is linked to
a very clear system because you may have a donor card in your
pocket—
Dr Matesanz: Yes, I have!
Q337 Chairman: ... but if
you get into a hospital that does not have the process to process
it—that is what you are saying—then it is pointless
having those systems anyway. We have run over our time and I did
want you to say one thing briefly, if you could, because I realise
I am going to be holding up my Committee over their time otherwise.
You have seen the Department of Health's Organ Donation Taskforce
document, I am sure. Just very briefly, if those things in that
report were implemented in the UK do you think that it would make
a significant difference to our proportion of donations for the
population?
Dr Matesanz: I had the opportunity to present
the Spanish experience to this taskforce last year, and to have
discussions with the members of the group, and I had the opportunity
to read the report, which I think is a very good report. So in
my opinion from the theoretical point of view the application
of those principles should be very, very positive for organ donation
in the UK. The problem is probably how to develop all of these
points because if you read to do this and this and this there
is nothing wrong, but the point is how to have really any influence
on the hospital because to put in more coordinators, to have a
central organisation in charge of these coordinators and to train
these coordinators, all these things are very positive measures,
so I fully agree with this plan, but the problem, I know from
our experience in Spain and other countries, is that the implementation
of such a plan is not easy.
Q338 Chairman: It is the influence
in the hospitals which counts?
Dr Matesanz: The general implementation at the
national level is complicated. Especially you have a problem in
the UK; there is a problem in Holland, in Germany and in many
countries with very strong systems in place, which however does
not exist when you arrive in a Latin American country and try
to implement the model in the Spanish way. The main problem with
greatest European countries is that they are resistant to change.
Q339 Chairman: Inertia of
change, which we all face.
Dr Matesanz: You have a very old and strong
system in place, which is very difficult to modify. That explains
why many European countries have not been able to develop a system
like the Spanish one and why in Italy they developed because in
Italy when we started with this the situation it was really a
very big disaster—they had not more than five per million.
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