Memorandum by the National Kidney Federation
Please note that the NKF is a charity run by
Kidney Patients for Kidney Patients. There are currently just
under 40,000 Established Renal Failure (ERF) patients who are
our members, and who cannot live without either Dialysis or Transplantation.
As Chief Executive, I am not myself a kidney
patient but am employed to speak for kidney patients.
1. There is a shortage of organs in all
member states with the possible exception of Spain. The extent
of the shortage varies, but is particularly bad in the UK.
2. The organ donor system is run by UKTransplant,
however it does not have the resource to make Organ Donation a
"Household Word". Transplantation is organised in 21
centres—who co-operate with UKTransplant. The current Organ
Allocation system was developed by UKTransplant to spread the
available organs more fairly, however, it cannot generate sufficient
organs and therefore "fails".
3. More resource is required to make the
public aware of organ donation—Television and poster adverts
are required in the same way as the need for Blood is advertised.
4. Sadly UKTransplant believes that a campaign
to "sign up to the organ donor register" is as good
as a campaign to "Carry an Organ Donor Card". It is
not as good—it has no visual impact and the public have
no sense of belonging to the scheme. It is faceless and hard to
promote, although we are sure it is a cheaper system—as
both schemes need the register. A European Donor Card may be a
good idea, but it depends whether altruistic people will be put
off by organs being perceived to be going abroad to be transplanted
to other nationalities—whilst this does happen now, it is
not so obvious and may not suffer this downside. All Cards should
carry the signature of the potential donor and his/her next of
kin in order that his wishes are known by other members of the
family.
5. In the UK, it is only by using living
donors that Kidney Donation has not faced "melt down".
The numbers of cadaveric donors have been steadily falling—many
of my patient members are alive today because of Living donation.
It has been essential.
6. Each Country needs an Authority like
UKTransplant to ensure equity of distribution and quality and
safety of organs.
7. Altruistic donation, pooled donation,
paired donation, living donation and cadaveric donation with the
previous consent of the donor are all ethical. A Trade in organs
for financial benefit by any person or business is not ethical.
A Trade in organs is a trade in human misery suffered by both
donor and recipient and should be stamped out.
8. A Dialysis patient leads a poor quality
of life, unable to work and a non-contributor to society. A Transplanted
patient usually leads a near normal life and is part of the community.
A transplanted patient is a contributor—not a taker.
9. There are medical risks in organ Transplantation,
but for the donor these are very small. For the recipient the
alternative is usually death either immediate or within a small
number of years (Average life span on Dialysis eight years).
10. Illegal Trafficking needs to be halted,
however patients should not be made criminals as they do it to
save their own lives—or at least try to.
11. Although all religions support organ
donation there is a wide perception that some religions are not
in favour. More attention needs to be focussed on this mis-understanding.
12. Asian and Afro-Caribbean patients are
four times more likely to suffer renal failure than patients from
the indigenous white population and yet Asian and Afro-Caribbean
populations are far less likely to be organ donors—escalating
dramatically this problem.
13. A Change to presumed Consent is desired
by the National Kidney Federation, however unless substantial
changes are made to the NHS infrastructure to cope with any resulting
increase in organs—it will all be wasted. The UK needs More
Transplant Surgeons, more Intensive Care Unit beds, More Transplant
Coordinators, more operating theatre time, more of a transplant
culture in hospitals and amongst NHS staff. The UK needs to recognise
the importance of increasing Transplantation, it needs to double
the donation rate and find a way to stop relatives refusing permission
for the operation. Above all it needs a national organ retrieval
programme—particularly with Non-Heart Beating donors.
14. Relatives need to be aware of a potential
donors wishes—they should have had this discussion at the
time the donor chose to carry a card. If the card required the
relatives signature as well this would ensure this discussion
took place. Trained Transplant Coordinators should be brought
in earlier and it is they that should talk to the relatives—not
doctors and other busy staff who handle this badly. Britain has
the worst possible figures in relation to how many relatives refuse—49%.
This organisation applauds the EU for this
initiative and fully supports the final three bulleted points
signifying why the EU should take a lead in organ donation and
transplantation across the member states.
The NKF would also like to draw the following
report to the committee's attention
"More Transplants, saving More Lives"
published in 2006 by the All Party Parliamentary Kidney Group
and chaired by Evan Harris MP. Copies may be downloaded from:
http://www.kidney.org.uk/campaigns/Transplantation/APPKG-transplant-document.pdf
26 July 2007
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