Please note, this page is a summary of
the full conference speech (click here
for the full transcript).
A central part of the conference was the two session of
question time, one in the morning and one in the afternoon, when the speakers
were joined by other medical advisors to answer the questions put forward
from the audience.
What is the risk to a live donor, and
what are the issues on paying for kidneys?
Hany Riad: The risk of live kidney donation to the donor
is quite small. The risk of death is in the region of one in four
or five thousand. Keyhole surgery is expanding and if done properly
is a very safe procedure.
On paying for loss of earnings and expenses, this is supported
by the Department of Health. However, the guidance from the Department
of Health seems to be, they encourage it but they never put pressure
on the purchaser and health authorities to actually do it, and I
have a case of a mother who is asking for £100 and the health
authority is refusing to pay it.
Prof. Feest: You might watch when the NSF comes out. It
is likely that there will be very clear guidance that the costs
of donors should be reimbursed.
If there is no card carried, why can't they be used
Lilian Cerosoli (nee Rutherford): I would rather die than
get a kidney that was not a gift of life. For me, it's peace of
I work with it's peace of mind as well. Because I look after people
after a kidney patient has died, I still see the relatives because
I work in the community.
Hany Riad: I very much agree. A scenario which we come across
not infrequently is of an 18 year-old who comes off his motorbike
and has a serious head injury. If this person had not opted out
and if the mother says she did not want her son's organs removed,
would you still want me to take his organs out against his mother's
request? For that's what opting out means.
Prof. Feest: It's a convenient debate - it has been in
the past - to get everyone arguing about opting out and opting
they're not looking at getting money into other areas that are
proven to work. I think things have changed through UK Transplant,
but there are
lots of other areas that are going to make much more difference
than opting in or opting out. I think the politicians have got
comfortable talking about something that probably won't make much
difference and isn't politically such a hot potato as other things.
Maggi Steele: An important point is that if your family
know what your wishes are in the event of your death, even if it
is not what they would want, the chances of them going against your
wishes are remote.
A patient has been finding it impossible to get temporary
dialysis when he has to travel on business. Is the National Service
framework going to address this problem?
Anne Keogh: I can't tell you specifically whether there
is anything going on. Holidays are a major issue. All patients'
families and staff would like to encourage holidays but the difficulty
is the amount of capacity for haemodialysis up and down the country.
What will be interesting is that the National Institute for Clinical
Excellence (NICE) have now said that home haemodialysis should
much more, but again that's going to take quite a long time in
freeing up spaces.
Guy Hill (North West KPA): This is something that we've
looked at as a KPA because we represent Manchester where you would
feel that lots of people would want to travel for longer than one
night. I did approach our hospital and ask them whether they would
allow us to fund a holiday/dialysis situation where we paid for
the bill for that particular stay. I was told that they had never
considered it because they had never been asked for it. I think
it's within the NKF to try and arrange that sort of situation. And
the question I ask of all of us here is, if it was offered as some
sort of arrangement where you could have that sort of thing, would
we actually use it?
Simon Lloyd (Tyneside KPA): Having sat on our own regional
special commissioning group, there are ways of cost exchanging.
I would caution against KPAs getting involved in expenditure.
Tony Chu was asked if patients used sunblock all
the time and covered themselves up, what implications would it have
for the bones?
Tony Chu: Really very little, even with a high
factor sunblock. How many of you realise that you can get your sunblocks
on prescription? You can get Roc Factor 60 on prescription, so go
and ask your GP about it.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.