Examination of Witnesses (Questions 480
- 499)
THURSDAY 3 APRIL 2008
Ann Keen, Ms Triona Norman, Mr Peter Jones and Mrs
Elisabeth Buggins
Q480 Baroness Gale: There
does seem to be some evidence that if somebody is willing to make
a donation of an organ then if it was Community rather than locally
based they would think, "Oh, I'm giving it to the whole of
Europe," type of thing.
Mrs Buggins: I think you have heard from Professor
Gurch Randhawa already and his advice to the Taskforce was really
quite clear about this, that we need to see donation of organs
very much in the context of how an individual views donation otherwise.
I give to those things with which I identify for some reason,
and it may be a cause or it may be a location that will prompt
my giving. You have also heard from Rafael Matesanz from Spain,
and the donation rates in the smaller regions there are far, far
higher than in the larger regions. I think that suggests that
the smaller the scale the more people will be encouraged to donate.
I guess the majority of people across Europe if they were asked,
"Who are you?" would not say, "I'm a European."
They would say, "I'm a Londoner" or "I'm a Midlander
or a British person" in my own case.
Q481 Lord Trefgarne: Or Welsh.
Mrs Buggins: Okay, so English, maybe. These
things are very sensitive, so if we are trying to encourage donation
I think the more local focus is more likely to be the most welcome.
On the other hand, having European support for donation, however
that might be expressed, would be welcomed, because anything that
stimulates the debate we know very rapidly translates into registrations
on the Organ Donor Register. The discussion around presumed consent—all
the different views that were expressed in January—resulted
in quite a marked rise in the graph of registrations, so we know
prompting discussion is a very good thing. But the implications
of consent in different countries would be a confusing factor
for many people who have not yet thought about what it means to
donate in the country with which they are familiar, and in which
they may feel more or less comfortable.
Q482 Lord Trefgarne: We have
heard evidence that in some communities in this country, for example,
in the West Indian community, the donor rate is extremely low.
They have an extreme problem of finding organs suitable for their
own community because there are some blood considerations which,
if not unique to the West Indian community, are more typical,
and there is a problem. Maybe a community card among them, for
example, would begin to address that sort of problem.
Mrs Buggins: I think there are real dangers
here because in this country we do not allow directed donation
once people have died—we do when they are alive, interestingly,
but not once they have died—and if we start identifying
and putting further loops or boundaries around particular communities
it will make it quite difficult to maintain that position. Having
said that, there is a real problem in securing enough organs for
people from those communities and we know they are far more likely
to die on the register than those of a white background, so we
do need to address it. It is interesting, looking at the evidence
around it—and others are probably better qualified to speak
on this than I am—that the public confidence people have
in health services seems to correlate with their willingness to
donate. I know from the West Midlands and research we have done
in my region that people from minority communities have less confidence,
are less satisfied with the NHS than the white community, so that
may be one reason why they are less inclined to donate. There
are also cultural difficulties. In many cases people will default
to a no and a refusal position if they are unsure what to do.
Although there is clear faith guidance for all the religions supporting
donation, local advice on a case-by-case basis by local imams,
for example, means that the delay in seeking that advice mitigates
against donation. There is a whole sequence of things that need
to be taken into account.
Chairman: That seems a good point to
bring in Lady Young.
Q483 Baroness Young of Hornsey:
Thank you. I am glad you have said you would foresee real dangers
of going down that route for a particular community because I
think that is a really bad road to be going down—although
we will come on to targeted awareness and other issues in a later
question. How satisfactory do you think the Commission's current
ideas for research into socio-economic and cultural factors are
in influencing organ donation? We have heard from a number of
witnesses that there are lots of areas where people do not really
know what is going on across the EU. What do you think our Government's
action should be in order to support this work most effectively?
Finally, if funding for research does not emerge at an EU level,
what plans does the Government have for addressing that situation?
Ann Keen: There is already very helpful research
being funded in Europe to inform the socio-economic and cultural
factors influencing organ donation, such as Alliance-O and DOPKI.
Ms Norman: You probably already have information
on that but if you need further information I can certainly supply
it after the meeting.
Q484 Chairman: Thank you.
Ann Keen: We undertake research in the UK to
support organ donation and transplantation. The results of such
research can be made available, of course, across Europe. Elisabeth
might want to comment on the recommendation of the Taskforce.
Mrs Buggins: We made two particular recommendations
for research. One was about promoting the gift of life in the
black and minority ethnic community, in particular, and we heard
some fairly compelling evidence that the range of communication
around particular diseases where they are prevalent in those communities
often has not included reference to the value of donation. But
we need to understand how to communicate those messages better
and to encourage people from those communities and all communities,
indeed, to donate in greater numbers. There are a lot of questions
to which we do not have answers at the moment. That is a key area.
The other area which I think is interesting is identifying personal
and public recognition of donation where desired. It is anecdotal
but I heard from a number of different people from different backgrounds
about their different preferences, and we have recognition in
this country. In Glasgow, for example, there is a loveseat in
the Kelvingrove Art Gallery, and every family that donates an
organ is given a silver leaf that may be implanted into that seat
as a sort of recognition if they wish. There is a memorial in
Wales. Some people would like a letter from the CMO to acknowledge
the value of their gift to society; others would like a much more
public recognition. In some south Asian communities, for example,
if money is donated from here back overseas, when they visit their
home town they are feted on arrival if their donation is significant.
That seems to encourage donation in those communities. In some
British communities that would be anathema. We probably need to
differentiate the recognition in some way but we do not understand
enough about that to know what is the right thing to do currently.
Probably of most interest to me—it is alluded to in the
Taskforce Report but not made as a specific recommendation—is
understanding better what would make clinical and emergency clinicians
and those dealing with end of life more comfortable with referral
for donation. For me, that is a really key issue.
Q485 Baroness Young of Hornsey:
You used the very interesting example of Glasgow and there are
other examples you have used. Are you aware of research that has
gone on around Europe that also highlights different ways of valuing
the gift, as it were, that had an impact?
Mrs Buggins: I am not.
Q486 Baroness Young of Hornsey:
That is the kind of thing that it would be quite useful to know
about. We are wondering what it is that we can get from across
the EU.
Ann Keen: It has been 60 years and we are looking
to see, in the celebration of the National Health Service, how
we could promote giving. We talk of giving in so many ways. In
a very moving incident, two sisters were being looked at clinically
to see which sister could donate to their sister who needed a
kidney. The eldest sister so much wanted it to be her because
she had not had children and therefore she felt she was still
giving life in some way. There are some moving stories of live
donors in particular. I visited Hammersmith Hospital recently
with Professor Taube where I met a daughter who had given a kidney
to her mum, her brother who had given to his sister. Everybody
I met. It was unbelievable. It was so significant to the family.
I wanted to tell people, when I came out, what I had just seen.
I think we are still very ignorant on this line of what changes
have been made and what giving really does mean.
Q487 Baroness Young of Hornsey:
Perhaps I could push you quickly on that question of what our
Government should do in order to support the research more effectively
across Europe.
Ms Norman: This is something we can look at
within the action plan. One of the strands of the action plan
is to look at increasing organ availability, looking at the guidelines
for living donors, for raising public awareness. That is still
at an embryonic stage but, as part of that work, we can see what
funding is needed to support research that could come out of that.
If indeed funding is available, I would imagine that it would
be possible to look at that area and to take up that point which
you make as part of the action plan.
Q488 Chairman: Europe spends
a lot of money on a lot of things. We are thinking this might
be a useful thing for them to spend money on that might enhance
work that is going across Europe in all countries on this area.
It might be a recommendation that might be helpful.
Ms Norman: Yes.
Q489 Chairman: Could I move
on to the Taskforce and implementing. During our evidence taking,
of course, your report came out. It has been described as a first
class document by a number of witnesses who valued the content.
However, it sticks in my memory that, when listening to Dr Rafael
Matesanz from Spain, we asked him about our Taskforce and whether
what they were doing in Spain could be implemented here so that
our numbers could come up to that of the Spanish level. He sat
for a moment and thought about it, and said, "You have a
very old established Health Service" or words to that effect.
I think the point was that change might be quite difficult to
achieve. The next question is about what firm commitment the Government
is making both in funding the recommendations of your report during
2008-09, 2009-10, and 2010-11, and how that commitment of the
professional and other staff in the NHS can be secured so that
there are changes in attitudes and methods of working which we
need to implement the report. I think you alluded to this a little
earlier in what you said. What barriers do you envisage will need
to be overcome in order to ensure the successful implementation
of the report?
Mrs Buggins: First of all, I would like to say
that I am absolutely delighted with the enthusiasm with which
this report has been received. I think that is a tribute to all
the people who helped us, of which there were many. I am also
delighted that the Government has funded it in full. The Minister
would like to tell you about some of the implementation arrangements
that are being made within the Department. You are right, of course,
that implementation is what matters, because it is making the
organs available for transplants that will be the key success
criterion. If I could turn to the Minister for a moment to say
about the implementation arrangements within the Department and
then perhaps I could elaborate on how we think that will work
out in the service, in this wonderful 60-year old institution.
Ann Keen: We are not biased!
Q490 Chairman: We are not
saying that was our opinion.
Ann Keen: I am really pleased to say that to
come to your Committee today is a pleasure in itself, but to come
to your Committee today with an announcement that has gone out
on the wires, as they say, today, that we have appointed Mr Chris
Rudge to join the Department of Health on secondment from the
NHS Blood and Transplant as the National Clinical Director for
Transplant, is very exciting. It is hot off the press into your
Committee today. He will be accountable to Sir Bruce Keogh for
the delivery of the recommendations, and the whole Department,
in particular my colleagues here today, are so pleased and excited.
We have been waiting to be able to tell you this today and to
get to a part where we could say this. We all wanted to say it
and I got the chance to do it because I am the Minister. It is
back over to Elisabeth to elaborate on the plans.
Q491 Chairman: We can share
your excitement.
Ann Keen: I can calm down now.
Mrs Buggins: Both of those appointments are
very important to the implementation of the report: Sir Bruce
Keogh as medical director heads up the clinical community within
the NHS and also has a very strong relationship with Sir Liam
Donaldson who is the Chief Medical Officer in whose department
responsibility for transplant sits, and Chris Rudge, as you know,
has huge expertise in this area and will be able to impact the
NHS on a day-to-day practical level, particularly within the clinical
community. It is not just the clinicians though who need to understand
the importance of transplants and particularly the importance
of donation; it is also the management community. The management
community have not really been sighted on the value of transplantation
in sufficient numbers to date and one of the things that Chris
and Sir Bruce will need to oversee is the collection of data and
the dissemination of data in a way that is meaningful to individual
chief executives and medical directors within the NHS. Once we
get that comparative data and they can understand how well or
not they are doing in terms of translating potential donors into
actual donors, we will really begin to see the acceleration of
donation in this country.
Chairman: That takes us very much into
targeting and the question Lord Trefgarne wanted to ask.
Q492 Lord Trefgarne: The Taskforce
Report calls for a dramatic increase in the donor rate, which
is of course supported by everybody. If that increase can be achieved
or something like it, will that be sufficient or will there still
be a huge waiting list for organs? Secondly, along the route to
achieve that increase it is not just a question of finding more
donors or persuading more donors; it is a question, as we have
heard in evidence, of being able to retrieve the organs at the
critical moment and often there are not enough surgeons or theatres
or whatever is needed for that purpose. Can you reassure us in
relation to either of those things: first of all, the residual
waiting list if a significant increase can be achieved and, secondly,
the infrastructure that goes with an increased number of donors?
Ann Keen: I think we have to be very careful
not to raise expectations and to take small steps at this moment.
The Taskforce is a very aware—there is the document on presumed
consent, our Chief Medical Officer last July raised it, the Prime
Minister has raised it, the health ministers are talking about
it—that we may be raising expectations that the increase
will happen very quickly and we do not believe that it will be
as dramatic as that. Of course, we are learning lessons, as we
said at the beginning, on how to implement this in relation to
our standards and our quality and our professional training—and,
as you have said: Is there always a team there? I know how difficult
that is, but we have huge awareness raising to make. We are looking
in many interesting ways at how we can develop that, but if it
is said in five years we have increased our donor rate by 50%,
then clearly we would look for further improvement on the waiting
list.
Mrs Buggins: The waiting list is currently rising:
6.2% over the last 12 months, and is likely to carry on rising.
It is also true that patients are not put on the waiting list
if clinicians do not feel there is a realistic possibility of
them receiving an organ. As the supply goes up, the demand also
may rise, and so there is a worry in saying that waiting lists
will reduce even though the numbers of transplants have increased
quite dramatically. We need to see how that unfolds over time.
Q493 Lord Trefgarne: The real
waiting list is probably about twice the length of the published
one, is it not?
Mrs Buggins: We do not collect the data, so
we do not really know and it would be a guess.
Q494 Baroness Gale: The report
on the Taskforce was a UK report. In order to increase the numbers
of donations, you are working on a UK basis. What links or consultations
do you have with the devolved nations? I am thinking of Wales
in particular. Do you talk to the Welsh ministers and do you talk
to the Welsh charities? Their concern is that there voice might
not be heard on a UK basis and it is important for all parts of
the UK to be involved in this.
Ann Keen: Yes, we are. I know that Elisabeth
is visiting countries and I intend to visit the ministers and
the ministers visit me too. We have had a dialogue already.
Mrs Buggins: I am visiting the Scottish Minister
on Tuesday next week and I have offered to talk to all of them.
I am going to Northern Ireland shortly too and I have written
to the Welsh Minister. While there have not been members of the
first Taskforce work from the devolved administrations—because
it was set up as an English Taskforce—people did attend
and were welcome and fully took part in the debate as part of
developing the first Taskforce report. Each of the countries has
signed the report and accepted it and its recommendations. In
terms of the next piece of work that we are now doing, on presumed
consent, we are involving explicitly people from each of the devolved
administrations in the expert work that is going on, and looking
for full membership of the Taskforce from people from the devolved
administrations.
Chairman: Lady Young is going to pursue
the issue about ethnic groups and organ donations.
Q495 Baroness Young of Hornsey:
We have already discussed this to some extent, but I have a question
to do with this high prevalence of kidney failure induced by diabetes
type 2. Is that caused by a genetic predisposition or is it about
lifestyle and diet? Going on to what we have on the sheet: what
plans does the Government have to reduce the need for transplants
in the first place? What preventative work can be done amongst
those communities? What plans does it have to help bring about
an increase in a relatively low organ donation rate? Again, you
have already alluded to some of those ideas.
Ann Keen: First of all, this week, on Tuesday,
we launched our cardiovascular screening programme. I attended
events for people aged between 40 and 74, and of course young
people will need the advice and help too. We are screening for
diabetes and all of the areas that would create concern. For prevention
and take-up on the education side, much investment is being made.
The nursing workforce—the practice nurses and primary healthcare
teams—is very involved in how we will manage this and we
are talking to GPs about how we will manage this, but the whole
scheduled programme for screening to prevent is already under
way. A huge investment has gone into that and a huge commitment.
The Prime Minister launched this on Tuesday morning. With the
communities that are more likely to have a problem, there are
more educative ways of getting into those communities to assist,
from school nurses right the way through the spectrum to the older
age group as well, who are slightly more reluctant to talk about
their health, so we need to do much more work there.
Q496 Baroness Young of Hornsey:
There are those kinds of preventative and educational issues but
I am also wondering about lifestyle and diet. Is that an issue
or it is just something that happens? That is what I cannot quite
understand.
Ann Keen: On Tuesday in Tooting I witnessed
people coming in who were given advice on smoking—as always;
diet; there was screening for cholesterol; blood pressure checks.
Aortic aneurism for men, in particular, would be checked, and
weight. They were then given advice and special help—not
a lecture. Lectures do not work on anyone, do they? It is really
serious, supportive health education from school right the way
through the age groups, and in the most imaginative ways that
you can get into some of the more difficult communities. The retail
trade is offering to help greatly. Asda do a lot of work in offering
checks in their supermarkets. The labelling of food of course
has made a difference, and getting a consensus on that would be
helpful. All of the preventative measures that we can look at
we are doing.
Mrs Buggins: One of the interesting things we
are doing in the West Midlands, which I think harks back a little
bit to how you engage people in these discussions, is training
people from deprived communities to become health trainers. You
are taking people from a particular community, giving them some
understanding about lifestyle and its impact on disease and genetic
predisposition, and then they are going back into their own community
and helping people to change their health behaviours. That is
remarkable on a number of fronts: the impact that it is having
in those communities, as well as what it is doing for that individual
in terms of getting them into a new career and new aspirations
and understanding about the control they have over their own health
and wellbeing. That is a perfect vehicle for having conversations
about donation too. That local focus and rooting it in communities
means that it is their conversation, they can own it in a way
that perhaps health professionals telling them what they should
or should not do does not have quite the same impact.
Q497 Baroness Young of Hornsey:
You mentioned both genetic predisposition and lifestyle. Is it
a combination of both that accounts for this prevalence in those
communities?
Mrs Buggins: I am clearly not a clinician.
Q498 Baroness Young of Hornsey:
No, I understand that.
Ann Keen: But that is my understanding.
Chairman: What is interesting is the
move from clinical health services to holistic health services.
That, we think, is something to do with why some groups do not
engage. They do not engage with the clinical but will engage with
the holistic.
Q499 Lord Wade of Chorlton:
May I make a point on this, my Lord Chairman? I am an insulin
dependent diabetic. I started off as a type 2 diabetic and I was
put on pills. We are all put on pills when we start and it is
when you are on the pills that everybody gets the problems. As
soon as you are on insulin, you become a different person. Suddenly
you can cope with it and all these problems disappear. The number
of people in a similar position to me who agree entirely with
what I have just said is quite amazing, and, yet, as soon as the
person is first diagnosed with diabetes they put them on pills
and say, "Do this and do that" and slowly that is when
your sugar levels go very high and that is when the damage is
done to your kidneys, your eyes and all these other things that
go wrong with you. I can never understand why the medical profession
do not get people on insulin a lot, lot sooner. As soon as they
do that, you are a different person. There is some advice.
Ann Keen: And duly noted.
Chairman: We would like to move on to
a lot of difference of opinion we have heard and that is about
presumed consent and Lady Neuberger is going to pursue this area.
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