Examination of Witnesses (Questions 182
- 199)
THURSDAY 7 FEBRUARY 2008
Professor Gurch Randhawa, Dr Magi Sque and Dr Tracy
Long
Q182 Chairman: Good morning
and welcome. We are absolutely delighted that you are going to
give the time to us this morning. We have had a lot of witnesses;
we are struggling with a lot of issues and I am sure you are going
to be able to help us with some of them this morning. There are
some housekeeping things I have to say to you; I have to say them
every time someone comes into this room. Thank you for your written
evidence. This has been circulated to the members of the Sub-Committee
so you will not have to repeat at great length your written evidence
because we expect everyone to have read that, but of course you
may want to refer to it. We have with us Professor Bobbie Farsides
who is our specialist adviser for this inquiry. I have to remind
you that the session is open to the public and will be recorded
for possible broadcasting or web casting. A verbal transcript
will be taken of your evidence. It will be put on the public record
in printed form on the parliamentary website. A few days after
this session you will be sent a copy to check for accuracy. We
do advise you that if you want to change anything you will let
us know rapidly. The speed of turnover of these things is pretty
prompt. At the end, if we have not got through everything or you
think there is something we have not covered you can submit supplementary
evidence. The acoustics in this room are very difficult so it
is helpful if you could try to speak as though you are in a public
place. We would be grateful if you would do that otherwise we
will not get what you have to say on the record and it is important.
When we start can we ask you, for the record, to state your name
and official titles and then, only if you wish to, make an opening
statement? After that we will go into questions.
Professor Randhawa: I am Professor Gurch Randhawa;
I am Director of the Institute for Health Research at the University
of Bedfordshire.
Dr Sque: I am Magi Sque and I work as a Senior
Lecturer at the School of Nursing and Midwifery at the University
of Southampton.
Dr Long: I am Tracy Long and I am a Senior Research
Fellow at the School of Nursing and Midwifery at the University
of Southampton.
Q183 Chairman: As you do not
want to make an opening statement of any kind, we will move straight
into the questions. I am going to begin by talking about Professor
Randhawa's work relating to ethnic minority groups. We have looked
at your written evidence and some of the work you are doing for
the King's Fund. What we would like to ask is if you would describe
for us your views on the issues affecting organ donation rates
among South Asian and African-Caribbean ethnic groups in the United
Kingdom. What further research do you think is needed to investigate
these issues and to develop ideas for improving organ donation
rates amongst these groups? In what ways do you feel that involvement
of the European Commission could help with this work? Just to
remind you, we are not, like the task force, doing an investigation
into organ donation but particularly looking at how Europe and
the European Commission can help with this work.
Professor Randhawa: Can I begin by unravelling
a lot of those issues and start with the first concept which is
that there are a lot of underlying issues that we need to be aware
of concerning the different ethnic groups who live in this country.
The first point I would like to stress is that we are actually
ahead in this country in policy terms as we do collect ethnicity
data, so the very fact that we do know where we in relation to
variation in organ donation and transplantation rates in the UK
is a good thing and I would stress that in terms of Europe-wide
all the other major European countries do not even collect ethnic
data. Although it is quite distressing to hear about the different
issues affecting ethnic groups at least we have a base line and
move on from that. In terms of the key issues, as I have stressed
in my written evidence, 20% of the waiting list in this country
for people waiting for a transplant are made up of non-white communities.
Clearly that is in far greater proportion than how they make up
the UK's population. The really important issue which we need
to focus on is the fact that those communities only make up 1%
of donors and, because of issues around tissue type and blood
group matching, the need for organ donors from those ethnic communities
is actually very, very urgent. What we are going to find is that
as those populations are much younger at the moment than the rest
of the communities in this country the rates of diabetes and high
blood pressure at the moment do not seem to be going down. Sadly
it looks as though the rates of kidney failure will continue to
increase in those communities so the demand will actually go up.
The current problems we see in dialysis units across the country,
especially in inner city areas, are actually going to get a lot
worse before they get better unless we address the two fundamental
issues. One is around how we are going to increase the number
of organ donors amongst those communities and secondly—which
I think is far more important—how are we going to stop the
need for transplantation amongst those communities by preventing
ill health in the first place.
Q184 Chairman: How do you
think Europe can help in this?
Professor Randhawa: I think the first thing
Europe can do is that if across Europe we understood that it is
really important to collect ethnicity data that would be a massive
step in the right direction. Dr Sque and I were at an event in
March in Rotterdam where there was a European platform and I have
to say that at that event there still was not appetite amongst
the major European countries to collect the data. They simply
do not have the focus that we have in the UK around equity, around
the need for equalities in the system and the need for making
sure that everybody has an opportunity to benefit from transplantation.
I think if we could get a Europe-wide understanding that we do
need to collect different ethnic data and then begin to understand
how different sections of the population either benefit or not
from transplantation we would then hopefully see, on the back
of that, Europe-wide strategies on how you are going to deal with
the problems. At the moment I would say that the UK is at least
ten years ahead of any other country on how to grapple these issues
due mainly to government policies such as Our Healthier Nation,
Tackling Inequalities in Health: A Programme for Action—all
of which have given significant prominence to the need to reduce
health inequalities.
Q185 Baroness Morgan of Huyton:
Could I ask about preventative strategies and what is the relative
importance between increasing the number of donors and preventative
strategies? I think from what you said in answer to the first
question you place greater priority on reducing demand for the
need for transplants—for preventative strategies—than
financing increasing efforts to increase the number of donors.
Professor Randhawa: If you were pushing me into
making a choice that is what I would say. Our key concern at the
moment is that increasing the number of organ donors is a very
complex issue and I am sure my colleagues will talk to you about
societal issues around death especially among certain minority
ethnic communities. A lot of the work I have done has shown that
if you want to get people to think about death and think about
giving organs, think about burial and ritual rights, you have
actually got to go into those communities and really tackle this
face to face. That is going to take a long time. In the meantime,
if we do not deal with the preventative issues then the NHS will
go bankrupt trying to deal with the dialysis problem that will
occur. Wearing my other hat as a chair of a PCT I know that we
have to deal with ensuring that certain population groups do not
get to the stage of kidney disease. We have not published this
yet but I am currently leading a study funded by Kidney Research
UK which is a three year study where we are tracking South Asian
and white patients from the day they are diagnosed with diabetes
to the day they end up with kidney disease to see what is going
on. Early data from that study is showing that even though these
patients for a number of years have now been ill with diabetes
the South Asian patients, for one reason or another, have not
understood that the diabetes could lead to further complications.
They do not appear to understand the significance for them as
a community of having diabetes. I know it is confusing, but one
of the things that we are suggesting to them in terms of how we
grapple this issue with them is that I think we have to be far
more assertive and say to them that actually diabetes is their
cancer for them as a community. It is the illness that is leading
to deaths for them whereas cancer is not so prevalent in their
community. The irony is that they understand cancer very well,
even though it is not very prevalent, and they know it is associated
with death, but they are not making the same connection with diabetes
leading to kidney disease. That is where we are at with that study.
I do think we have to do something. If you look at places like
London, Leicester, Birmingham, Bradford in some of those units
now over 50% of their patients on dialysis are non-white. Given
that they are a younger population at the moment as those populations
get older we have a huge problem. Why I think Europe-wide we could
really do something about this, if you now look at recent migration
into countries like Italy, Holland, Belgium, Norway, France, Germany
and Spain although they do not collect the statistics we do know
it is the same communities at the same very young ages who are
now beginning to suffer the same illnesses. They could potentially
learn a lot from what we have done in the UK.
Lord Wade of Chorlton: I would just to
follow that up. I have been diabetic for the last 40 years and
I am still fit and well because I inject myself with insulin every
day. Why can everybody else not do that? What you have suggested
to us is that this problem is much more a question of not treating
diabetes than it is of organ transplants because if everybody
that you are saying has diabetes now is going to end up having
an organ transplant that is a much greater issue in itself. Is
the underlying problem dealing with the people with diabetes and,
if so, I do not quite see why that cannot be dealt be with more
effectively?
Q186 Chairman: Before you
answer that, I have a question that links into Lord Wade's question
so perhaps you can answer them together. I think this is the first
time we have had the connection so clearly put between the prevention
and the organ donation. You did mention Spain and we have been
told about Spain's huge success in organ donation. Would you know
anything about their preventive programme?
Professor Randhawa: Yes, I can talk about that
as well. Firstly, obviously diabetes is mainly related to kidney
failure. It is worth pointing out that for South Asian communities
there is a higher demand for liver transplants and cornea transplants
as well so it is not just kidney failure that is affecting the
ethnic communities. In terms of diabetes, you are absolutely right.
We do need to find a way of getting all of UK society to think
about how you manage chronic conditions. Again, if I can put my
PCT hat on for a minute, what we have done in this country at
the moment is borrowed a lot from self-care models from the US
which, I might add, have been tried and tested on predominantly
white, middle-class people who can afford private insurance. They
have not been tried and tested amongst the very diverse population
from very different socio-economic groups in this country. I think
there are questions to be answered about whether the self-care
models we are implementing in this country are appropriate, which
is why I think that the studies—not just the one I am involved
with but also others—about how you engage those communities
in thinking about these chronic conditions, asking them, "If
you were to play a role in managing this condition, what would
it be?" are so important. I do not think you can underestimate
the scale of that question because a lot of these communities
come from countries where you actually take no role in self-care.
They are used to a health service in which you hand yourself over
to a physician who, the majority of the time you are paying for,
and they do everything for you. Conceptually we are trying to
achieve something very huge by engaging patients in a more active
role in their care. The prize is huge if we can get there but
I think we have to understand how much resource is required if
we really want to engage the public with preventative action.
You are absolutely right, if we can get that right we should be
able to deal with at least kidney failure and diabetes failure.
Q187 Lord Wade of Chorlton:
Following on from that, I think this is an important part of what
we have to try to draw attention to. Better facilities to deal
with these long term chronic illnesses would be an effective way
of reducing the number of organ transplants that are needed in
the first place.
Professor Randhawa: I agree, but I think what
we have to be very careful about is then ensuring that the self-care
programmes and actually caring for people around chronic disease
management are culturally specific. We are not there in this country.
Q188 Baroness Neuberger: I
used to chair an NHS trust and I have a great deal of sympathy
with what you are saying. Can you comment at all on the extent
to which within Europe there are some of the same problems about
the expectation, that when you hand yourself over to a physician
it is all done for you so even in European terms—which is
really what we are here for—thinking about a self-care model
that really involves people, given their specific cultural backgrounds,
is quite difficult to do. Presumably that is part of your work.
Professor Randhawa: Absolutely. I think one
of the things that European countries are now grappling with is
that once you overlay issues around ethnicity, culture and social
class then the whole concept of self-care gets quite complicated.
Depending on those variables an individual's approach and mindset
to thinking about self-care is going to be quite different. One
of the things we recommended Europe-wide is that surely when we
are thinking about organ donation and engaging with communities
around organ donation, at the same time we should be telling them
that disease prevention is their priority. One of the things I
have been privileged enough to be part of is something that UK
Transplant and the Department of Health are doing at the moment,
which are a series of community based campaigns asking people
to donate their organs the "Can we Count on You? Campaign".
One of the criticisms we were actually getting—quite rightly—from
certain communities was, "So let me get this right. We have
never seen you before and now you are telling us that our communities
are dying and you need our organs. Where were you when we had
the diabetes and high blood pressure and kidney failure?"
We took that on board and now in certain parts what we are trying
to do is when the transplant coordinators go and deliver these
campaigns at the same time they are bringing along primary care
trust colleagues and diabetic nurses. The one I witnessed was
fantastic. They had the diabetic patient, an Asian man who talked
about what it is like to be diabetic. They then had a renal patient
talking about what it is like to have renal care. Each of them
talked about how these conditions are preventable but also manageable.
They then had someone who was on the transplant waiting list and
they also had a family who had agreed to give one of their loved
one's organs. So they got the whole picture on that day and essentially
the message was, "You can manage these conditions but the
consequence is that if you don't you're going to need a transplant
and, by the way, you're not likely to get a transplant because
there are not enough of these families coming forward".
Chairman: We are going to have go move
on now because of the time, fascinating as it is.
Q189 Baroness Morgan of Huyton:
To what extent do other groups—other than defined by ethnicity—have
particular issues, particularly for example socio-economic status?
When you look at low donation rates amongst certain ethnic groups,
is that just because of ethnicity or is that exaggerated because
of socio-economic status? Are there any other issues, for example
age or gender or anything?
Professor Randhawa: I personally think it is
the whole gambit of all those issues. I think ethnicity in isolation
does not influence whether you become an organ donor or not. The
only reason we have focussed on it is because we actually have
some data at least to give us an idea of which communities to
focus on. When you look at the people who do choose to become
organ donors it is influenced by the amount of information they
have been exposed to, their ability to understand that information
(which again is influenced by their levels of education and social
class) and one of the things that we are lobbying very hard in
this country now is for UK Transplant to collect data on the postcodes
at least (because they have that) and make known to researchers
who has agreed to sign the organ donor register so that we can
start to analyse that and explore whether there are any postcode
differences on who chooses to become a donor or not and then start
to understand why that is. We could analyse the records of the
families who have agreed to become organ donors and we are pushing
that to be a Europe-wide issue, that you need to understand people's
levels of education and their likelihood to want to read this
kind of information and make those kinds of decisions.
Q190 Baroness Perry of Southwark:
Could you please describe what is known about the extent to which
people take account of the position of their faith group to which
they adhere in informing their views on their own or their relatives'
organ donation? To what extent do you think that low organ donation
rates amongst some groups in the UK can be ascribed to the way
in which individuals choose to interpret the thinking on organ
donation of the religious group to which they adhere?
Professor Randhawa: I have personally been involved
with two studies, one involving South Asian communities and another
one involving African-Caribbean communities exploring those very
issues. Both studies found the same thing that where people know
what their religion's position is on organ donation they are far
more likely to use that information to make a positive decision.
If people do not know the position of their religion they are
more likely to say no. It is not that the religion is blocking
them, it is the fact that they do not know what their religion's
position is. I think one of the consequences of that is that although
UK Transplant have produced some superb material setting out the
position of each religion on organ donation I am not sure how—and
I welcome advice—but we do need to work with the various
religious institutions in this country on how they are going to
communicate that message and position to local levels so that
the person on the street, if they walk into the local church,
temple or mosque and say, "What is the position of my religion?"
the person does not say, "I don't know" or, which is
even worse, says something which actually is not correct and potentially
misinterprets the religion. Sadly I have known that to happen;
I have been on a few visits where people are adamant that "This
religion does not support organ donation" and I am sat there
saying, "This leaflet is suggesting this" and they simply
say, quite rightly from their point of view, "That leaflet
must be wrong". That must be very confusing for a lay person
seeking advice from a local faith leader.
Q191 Chairman: Information,
community involvement and community communication are the things
you are talking about.
Professor Randhawa: Yes, but I think in the
context of religion the various religious organisations and the
way they are structured have a huge role to play in disseminating
that information and getting some kind of consensus. At the moment
there is not consensus in faiths, which is very confusing if you
are a member of the public having to make a very difficult decision.
Q192 Lord Eames: My questions
are about family permission and suspicion that they do not want
to give that permission; how do we overcome that? How do we address
concerns of that nature and, particularly as we are concerned
about the European dimension to all this, do you know of any issues
that involvement of the European Commission could help to overcome
some of these difficulties? It is really grouping together the
question of getting permission from relatives for the donation
of organs.
Dr Sque: I think before we actually look at
the way we get organs it is very important to set the context
in which the request for organ donation does arise. I think we
have to realise that we are dealing here with bereaved families
of potential donors and both in the United Kingdom and across
Europe they are absolutely critical to the organ donation process
because they will normally be asked either whether they agree
with organ donation or will give consent or in fact have a lack
of objection. They also have a very important role in providing
medical and social information about the donor which could impinge
upon the donation going forward. I think we also have to realise
that we are not only dealing with bereaved relatives but the requests
for organ donation are most likely to arise out of situations
of very sudden, unexpected and untimely deaths. Also it happens
in a very provocative and emotional environment. All the evidence
has told us that these types of bereavement tend to be more difficult
than ones that are anticipated. Certainly these relatives are
at a very high risk of having complicated bereavements. That has
cost implications, of course, to the National Health Service in
following up these families. Family members are generally in a
situation where they have very little time to adjust to the loss
and they will struggle with the enormity of the events that are
unfolding around them. We have no evidenced link between indicated
support for organ donation and agreement to donate. When a family
is faced with a sudden death their status as newly bereaved may
in fact place specific demands upon them that will impact on their
decision making. We do know that donation rates have risen month
on month in agencies in the United States that have followed a
successful system redesign for approaching families about donating
organs. This process has been through the Organ Donation Breakthrough
Collaborative which has clearly shown the importance of focussing
first on a family's bereavement issues before any approach is
made about donation. However, what I would suggest to you is that
even in their grief our studies have indicated the importance
that is attributed by families to being asked to consider organ
and tissue donation. Suggesting in situations of donor suitability
that organ donation should be discussed with relatives and should
form part of really high quality, end of life and bereavement
care. It should not be seen as anything special or different;
it should be the usual rather than the unusual. Donation does
need to be incorporated into other end of life initiatives such
as the one that is being run by the Department of Health at the
moment on the End of Life Strategy. Combining organ donation in
assessment tools, for instance the Liverpool Care Pathway, which
is a clinical gold standard for caring for people who are dying,
has been associated with a substantial increase in donation from
families. That has been particularly shown in an ICU in North
West England. Healthcare professionals should feel very confident
and know that relatives are most likely to be grateful to them
for approaching them to ask about organ donation. We know from
our studies, for instance, that relatives are not offended: it
does not increase their distress; they did understand that health
professionals have a responsibility to ask: and, they are sympathetic
to health professionals that are tasked with this discussion,
as they realise it must be very difficult for them. I would want
to say that it is actually unethical not to offer the choice of
donation to a family because it is not necessarily something that
they will think about at this stage of their bereavement and most
families want to honour the pre-mortem wishes of a loved one,
even if they find it is difficult for them. If we deny a family
that opportunity then that ability to fulfil the wish of their
loved one is lost. We know also from families that donation can
sometimes bring them what they often see as, "some comfort",
in their grief. It [donation] also provides the opportunity for
the donor to achieve something truly incredible and this is really,
really important because it is a way of leaving a profound and
poignant legacy of life which not only provides a better quality
of life for the recipient but the benefits ripple out beyond their
family and the community. Families can find a source of esteem
and pride in that achievement from which, at the time, might have
been perceived to be a rather unremarkable life. There was a situation
in one of our studies where a young man had spent most of his
life in prison and his mother actually said that his disease,
he had asthma, was always much better controlled when he was in
prison because once he came out he tended to neglect himself.
He died of an asthmatic attack and his wife said that she thought
her husband had not achieved much in his life and that was why
she agreed to donation because this could have been his real achievement.
So relatives are actually motivated by what the donor can actually
achieve and they receive an appreciation and reciprocity on behalf
of the deceased. This is what I believe subsequently brings them
some solace in their grief. It is not about what the donor gives
away but it is what they are actually able to achieve.
Q193 Chairman: Dr Sque, does
that mean that you have a view about opt-in and opt-out and the
way relatives are dealt with in opt-in and opt-out?
Dr Sque: Yes, I believe that relatives need
to be involved. All the relatives that we have spoken to in our
studies over a number of years now have all expressed a desire
to be involved in the discussion about organ and tissue donation.
I would suggest to you that there should continue to be an opt-in
system.
Q194 Chairman: Do you have
a view about how the European Union can influence some of the
thinking on this? I notice in one of the papers you talk about
an organisation called ELPAT that is working.
Dr Sque: Yes.
Chairman: Lord Eames, would you like
to move onto your second question on this?
Q195 Lord Eames: I was hoping
that we could link the two areas together, but thank you for you
answer so far. Do I take it that irrespective of our concentration
on the European angle of all this you are really saying that a
lot of the reluctance or suspicion on the part of relatives, linked
of course to the trauma of bereavement situation, could be overcome
in terms of pre-education in that area, education as to the importance
of donation? Get it spread throughout a local community so that
when bereavement strikes it is not a question of suddenly introducing
this issue to them, they are aware of it. Is that really what
is coming through from what you are saying?
Dr Sque: I think that we need public education
right across the board because there are really three reasons
why people decline organ donation. One has to be that they know
that the deceased did not wish to be an organ donor, so that is
point number one. There is also a cultural distaste for having
the body interfered with after death and that is not only in ethnic
minority communities but also in the white community as well.
Right across the board, in all the studies that comes across very,
very strongly. The third thing is that the system for getting
agreement for organ donation has failed. This is where we put
great confidence in the results of the Taskforce, which has come
up with a system redesigned for England, which I think, if it
is implemented in its entirety, could have an enormous impact
on donation rates. Certainly as far as Europe is concerned how
that can actually be helpful to us is that Europe can help to
advertise and run programmes Europe-wide that actually help us
in increasing our public awareness about donation. We certainly
need to have awareness across the whole spectrum of the community
starting with children in early high school.
Q196 Baroness Neuberger: You
were very interesting right at the beginning in what you said
about how really the training of people who are giving end of
life care needs to change. One thing that comes across most strongly
is that you think the conversation has to happen both with people
who are dying and with people who are bereaved and that that has
to be part of the cultural change amongst health professionals.
Can I get you to tease that out a little bit more? You mentioned
an American system which has got organ donation rates up; is it
possible to have an equivalent that could be modelled in the UK
or go Europe-wide? Are there any more European countries that
are pushing at this or is it unique in Britain where we have a
much better developed end of life care strategy, even if it has
not been published yet?
Dr Long: The USA model, the Breakthrough Collaborative,
has got some key features within it but there are also some key
features from areas within Europe that I think would benefit UK
thinking in relation to this. The key features from the USA model
are that the individual who is in very early contact with the
bereaved family is a knowledgeable, motivated, positive about
donation, family focussed, very skilled individual. They are skilled
in the following kind of areas. They know all the information
that the family member is actually going to require but it is
not just about giving information; it is about confronting these
fears that individuals have in relation to this, the fears that
Magi has already described to you. There are concerns such as:
"Is my relative really dead? Are they going to be treated
with dignity? Are these organs going to be used?" You need
an individual who does not wait for those questions because family
members frequently cannot raise them; they find it a bit uncomfortable
raising those issues. You need someone who will say, "Some
people have these concerns, is that an issue for you?" You
also need a skilled individual who can deal with the family dynamic.
Frequently you may have one individual who says, "No, no,
no" and yet the actual next of kin, the closest member or
the person whom the deceased would expect to make a decision on
their behalf, their voice is lost. So you again have to have an
individual who can confront that issue and also investigate a
no response, not just leave it, which is what tends to happen
at the present time.
Q197 Lord Eames: All this
has to be done in a very limited period of time.
Dr Long: At the moment it does in the UK because
unfortunately we do not get in contact with the right person at
the right time. It tends to be left until the end and is all a
bit of a rush. In America, because they use clinical triggers
to prompt contact with organ coordinators early, they can then
have very detailed conversations with the intensive care team,
learn about the dynamic of the family, what is going on, what
do we need to think about in relation to ethnicity? What do we
need to think about in relation to the actual critical injury?
We need to have those discussions and decide who is going to say
what to whom and in what way? They have shown clearly that having
a specifically trained individual, we will call them a donor coordinator,
it does not have to be a nurse, it does not have to be a doctor;
in Spain many of them are medics, in the UK and in America they
are mainly nurses, it is about these key features that this individual
has to have which influences consent rates, but not only that,
it is not just about consent rates, it is also about families
being satisfied and confident with the decision they have made
because they also become community advocates for donation.
Q198 Chairman: I wonder how
typical that kind of good model is? Anecdotes are sometimes quite
helpful and I spoke to a woman at the weekend whose husband had
died and he had a donor card. She said yes to donation despite
her distress. She was in the hospital for 24 hours without anyone
explaining to her anything that was happening to her or her husband.
How typical is that and how much do we have to do to change from
that to the kind of system that you have just described?
Dr Long: It is typical and that is unfortunately
because there is such a shortage of donor coordinators in this
country. However, not only that, we are only just really developing
a model of in-house coordinators, which again is a feature of
the Spanish model, where you have somebody who can do exactly
what I have just described immediately. They are involved straight
away; they are part and parcel of all the areas within a hospital
that may have donation, because of course it is not just the intensive
care units and accident and emergency departments where donation
can happen, and therefore you can have this individual involved
in all those areas. In-house coordination is a very good model
from Spain and also in areas of the UK where it is happening.
The other essence of the USA model which is also being implemented
in the UK is collaborative requesting where you have a donor coordinator
and the intensive care team showing a cohesive face to the family,
going together. The actual conversation about death having happened
is separated from the donation request and that is facilitated
if you have collaborative requesting. Early trials in Oxford where
this is carried out have already shown an increase in donor consent
rates. Of course consent rates do not always lead to donation,
but consent rates have gone from 35% to 75%, so again that is
a model. If I could briefly refer to one other model, a new role
which is developing in Belgium in accidents and emergency units
and is called the "social nurse". The social nurse is
there as a patient and family advocate in resuscitation areas
where the voice of the family and the individual is often lost
because of the intensity of that situation. The social nurse is
there to liaise with the family, or be with them through that
difficult time and to make sure that their voice is heard in whatever
situation. As the Taskforce has recommended that it is a good
idea that two coordinators are always available, we would suggest
that the social nurse role would be a good model for one of the
roles within donation so that that person can focus on the family
while the other coordinator is focussing on making sure that the
organs are as good as they can be if they go forward for transplantation.
Q199 Lord Kirkwood of Kirkhope:
If the question that we are considering is, "Can you increase
donation rates by increasing public awareness?" I am trying
to find some measure of priority that each of you would give to
that and can I ask each of you to give me an estimation on a scale
one to ten, low to high, how important increasing public awareness
is to increased donor rates for organs?
Dr Long: Ten.
Dr Sque: Ten.
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