Examination of Witnesses (Questions 280
- 298)
THURSDAY 28 FEBRUARY 2008
Ms Jayne Fisher
Q280 Lord Kirkwood of Kirkhope:
They are all donor transplant co-ordinators.
Ms Fisher: They are all going to be donor transplant
co-ordinators, yes. There will be two people doing what one person
is doing at the moment with the family and the donor management,
and there will be then be a third separate person who will come
and take that person to theatre for the organ retrieval.
Q281 Lord Kirkwood of Kirkhope:
These could all be categorised as transplant donor co-ordinators.
Ms Fisher: The first two categories will definitely
be donor transplant co-ordinators. Whether the third person, who
will be in the theatre, needs to be a donor transplant co-ordinator
is being looked at and examined at the moment.
Q282 Lord Kirkwood of Kirkhope:
To get to your Spanish ideal, where we understand that they do
this better, how many extra staff personnel across the United
Kingdom would you estimate you would require to get to that standard?
Ms Fisher: I personally do not believe that
in the UK there is need to have a transplant co-ordinator on every
intensive care unit.
Q283 Lord Kirkwood of Kirkhope:
I was hoping your answer would be a number.
Ms Fisher: The taskforce have recommended that
the present number of donor co-ordinators—at present we
have about 100 in the UK—they are going to increase to 250.
Q284 Lord Kirkwood of Kirkhope:
Is that enough?
Ms Fisher: The taskforce have agreed that they
will meet each year and the whole process has to be very widely
audited. If at two and a half years past this point we have not
seen an increase—we should see an increase within the first
year, I do believe—then I think we need to revisit it. I
do not believe that having a co-ordinator on every intensive care
unit will make that difference because there are lots of hospitals
that only see potentially two or three donors per year.
Q285 Lord Kirkwood of Kirkhope:
If money was no object, how many would you need to do this gold-plated?
Ms Fisher: If money was no object, we should
have a co-ordinator in every large teaching hospital and every
large district general hospital who is looking at not only an
intensive care unit potential but also the potential donors that
are in the accident and emergency department.
Q286 Lord Kirkwood of Kirkhope:
How many is that?
Ms Fisher: I do not know off the top of my head
how many ICUs we have in the UK.
Lord Kirkwood of Kirkhope: For every
ICU how many would it need, because we can find out how many ICUs
there are.
Q287 Lord Trefgarne: There
are about 1,000, are there not?
Ms Fisher: Yes, 1,000.
Q288 Lord Kirkwood of Kirkhope:
So it would be a three figure number.
Ms Fisher: Yes.
Q289 Chairman: This may not
be in Ms Fisher's armoury of information. It may be information
we want to achieve from whoever we see in the future because I
think it is a very important question you have raised in terms
of the resource allocation and the fact that we have heard from
other witnesses that the British system is at the moment described
as "chaotic" in terms of its management across. How
we get from that chaos to what Lord Kirkwood is trying to get
you to describe in numerical terms is something we need to pursue
but we are probably pursuing you unfairly.
Ms Fisher: That is fine.
Chairman: Perhaps we could move on to
Lord Trefgarne, who is going to ask you something you will know
quite a bit about.
Q290 Lord Trefgarne: We have
heard how many families are perhaps not even approached when it
comes to the question of agreeing to a transplant and many families
are not fully briefed and not fully informed and maybe make their
decision in a situation of great distress and almost certainly
not fully informed of the issues. What do the families express
to you as an experienced practitioner in the area as their concerns
when they are going to refuse to give consent or even for the
reasons that they do give consent?
Ms Fisher: Families do give many different reasons
for saying no to donation. My experience personally and talking
to my colleagues is that one of the main concerns is a fear of
mutilation. Again, this is why I would stress the need for experienced
people to talk with families because somebody who has little knowledge
of the process I believe could not give this information accurately.
Often we will explore this with families and ask them: "You
are concerned about mutilation, can you explain to us what you
mean by that?" and they will describe that they do not want
the body cut up and things like this. When we explain exactly
what happens: "Yes, there will be one scar and that scar
will be closed as per normal," some families will change
their minds. Other people give reasons of wanting the soul and
the body to be intact, complete. Occasionally families do discuss
concerns about potential recipients. A good example is somebody
who may have been waiting for a liver transplant who has alcoholic
liver disease. Some families may say they would go ahead and donate
but they would not want to donate the liver. Mutilation is the
big thing and, again, as we have already alluded to a lot of families
from South Asian backgrounds particularly will say their religion
forbids it.
Q291 Lord Trefgarne: I wanted
to ask whether this reaction varied from different groups.
Ms Fisher: Yes, it does. Amongst the South Asian
community, it is, "My religion does not allow this."
Chairman: Lady Young, would you like
to pursue this?
Q292 Baroness Young of Hornsey:
That is an interesting point because one of the things we have
heard is that we need to separate out religion from ethnicity
in order to try to get to grips with this particular issue. I
am interested that you say that because South Asia covers a huge
range of different countries, different religions, different cultural
traditions.
Ms Fisher: I know it was a rather sweeping statement.
Q293 Baroness Young of Hornsey:
I know you have to speak in shorthand but, because it is such
an important issue, we need quite a lot of clarity around it.
I would also be interested in your view as to whether you think
the socio-economic position of a particular grouping has an impact
on their decision to donate or otherwise. For example, if we looked
at white working-class in particular areas, would we find similar
rates of refusal or similar issues coming up? The big question
is how we address this for the future without stigmatising people.
I am becoming concerned that if we float these statistics around,
it makes it look like there are these BME people who want to take
all the organs but they do not want to give any into the pool.
I am sorry, that is a whole suite of difficult issues for you
there.
Ms Fisher: I agree there is that danger. Can
I address the socio-economic question first? This is a very interesting
concept. I know UK Transplant were looking at recording socio-economic
class of donors. My experience has been that we always think,
"Where do the donors come from? The middle-class white people?"
My experience has been that that is not necessarily true and it
is more likely to be the working-class families that say yes to
donation. As far as the problems with donation from the ethnic
communities, there have been lots of programmes, lots of initiatives,
incentives. Nothing appears to have worked so far. I think we
need to examine why. There is one particular group at the moment
which has started a project with the Department of Health, the
Policy Research Institute, on age and ethnicity. I know they have
been asked to work with one of the sub-groups that have been formed
following the taskforce. Their philosophy is to work with the
community leaders within the communities and get right down to
the grass roots. I think that is where we need to start. As I
say, radio campaigns, television campaigns, newspaper campaigns,
leaflet campaigns, nothing seems to make any difference. Talking
to people from these communities and fellow healthcare professionals,
they are aware and have said that there is this danger, as you
say, of, "They're taking all the organs but they are not
prepared to donate." I do not think it is as simple as that.
We need to get together with these people and say, "Why do
you not donate?" It is still not clear why they do not donate.
The other thing we need to bear in mind is the fact that from
the South Asian community it appears from the potential donor
audit that there are not as many people from that community who
get admitted to intensive care within the UK. It appears they
may have different disease processes. Obviously we are aware of
the fact that there is a higher incidence of kidney failure and
diabetes within those communities but research was done five or
six years ago—and I could give you the details—which
said there is less likelihood of them going to ICU. Because of
that, one can assume that there is less likelihood of them being
identified and becoming a potential donor. Whether that equates
with admissions to an A&E department as well—whether
they get to the A&E department but they just do not reach
intensive care—again another problem we have in the UK is
the fact that there are many potential donors in the accident
and emergency department and if we had a co-ordinator in every
ICU those potential donors would, I believe, be identified.
Q294 Lord Lea of Crondall:
We have been talking in this question about family decisions,
but I assume that if people find in my wallet a donor card then
the family has nothing to do with it. The family cannot just say,
"Oh, no, I am not having that" or can they?
Ms Fisher: They can.
Q295 Lord Lea of Crondall:
I thought that when I carried a card, that meant that was my decision.
Ms Fisher: No. The present legislation says
that if you have recorded a wish pre-mortem, before you have died,
that you would like to be considered to be an organ donor, your
wishes should be adhered to. It says "should" in the
HTA. The donor co-ordinator would come and speak to your family,
they would say that your wish was that you wanted to be an organ
donor and, in practice, I would say that 97 or 98% of families
would agree. But there are occasions when somebody can be registered
on the organ donor register and the family can override that wish.
Q296 Baroness Morgan of Huyton:
Could we move on to the question of the EU Directive and what
it may say about organ quality and safety. What is the balance
of benefits of the imposition of high standards of quality and
safety against the possible reduction that might occur in the
supply of organs. Even before that, in a sense, how relevant do
you think the Directive would be in the provision of organs?
Ms Fisher: At the present moment within the
UK there are very few organs that are going across borders. UK
Transplant would give you the absolute numbers but I would say
we are talking of probably 20 a year—so minimal numbers.
The reason for that a lot of the time is solely because the clock
has started ticking—once the organ is retrieved you only
have a certain period of time in which to transport it to another
centre. Obviously the most important thing throughout all of this
is that we maintain safety of the organ. If we are going to have
a Directive then everybody has to work with that Directive to
ensure that there is no transmission of disease, parasitic disease,
malignancy and all that sort of thing. The danger is that if the
legislation is too strict then we will start to lose more marginal
donors. By marginal donors I mean people who may have had some
disease processes—they may have positive hepatitis; they
may have had previous cancers and things like this—and if
we start to restrict too much, they, without doubt, will fall
by the wayside. As we know, the shortage of donors is not just
a UK problem; it is throughout the European community, so I think
we need to be very careful. Also, it is important from the other
side, as far as the potential recipient goes. Although it will
always be the person who implants that organ who takes the final
decision over the safety of transplanting that organ, there is
always the risk versus benefit. If you have somebody who has less
than 24 hours to live, you would take that risk with that organ.
I do not believe the Directive will have a major impact in the
UK because of the small numbers we are talking about and because
we are an island we are never going to change that, are we?
Q297 Chairman: If the UK followed
Spanish practice, which seems to have the highest outcome, without
any other involvement of the European Union, might we still achieve
what we are trying to get to? What added value would the EU bring?
Ms Fisher: I am not sure. The EU I know have
looked at projects of increasing donation within Europe and I
think any practice that we can adopt and introduce within the
UK that could increase donor numbers and help this problem has
to be applauded and welcomed really. As we have all talked about
this morning, if the taskforce recommendations are introduced
within the UK that will make a tremendous difference to our problem
and it should hopefully identify the required number of donors.
In the United States they achieved a massive increase in donation
rates with legislation. Whether at some point we may need legislation
within the UK, I am not sure.
Q298 Chairman: Legislation
saying what?
Ms Fisher: Legislation saying that every potential
organ donor had to be referred to an organ procurement organisation—in
this case, what would be UK Transplant. My personal experience
at the moment has been that I can speak to a clinician and say,
this gentleman was registered on the organ donor register, he
could have been a potential donor, can I just ask why you did
not approach his family?" and be told, "We didn't think
he was suitable" or "His family were very upset"
and that is as far as it goes. Nobody has to be answerable for
that lack of referral. One of my donor families said to me once,
"I want my son to be normal, not abnormal. People think of
him almost as a freak because he was an organ donor and he helped
all these people." I think the message from that is that
organ donation should be normal, standard practice within the
UK, within every ICU, and should be recognised as such, and, as
Dr Murphy has already said, by informing chief executives and
saying to chief executives, "Your Trust is failing at this
standard." Every Trust within the UK has somebody who is
on a waiting list of some sort or another, so it is everybody's
business really.
Chairman: Thank you very much indeed.
We are very grateful to both of you for giving us that advice.
If there is anything else you think we have not covered, please
do drop us a note.
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