NKF Campaigns Zone:
Transplantation & Live Donors

To:-
Barry Werner
Clerk to European Union Sub-Committee G
Committee Office
House of Lords
London SW1A 0PW

Dear Mr Werner

Inquiry into the EU Commission’s Communication on organ donation and transplantation: policy actions at EU level

Submission from the National Kidney Federation

Would you please find enclosed the National Kidney Federation (NKF) submission – this will also be submitted on NKF letterhead/signed by ordinary mail in addition - to this email.

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.

Yours sincerely

Timothy F Statham OBE
Chief Executive

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 and 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 8 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.

Signed

T F Statham...............................Chief Executive NKF

Dated

26th July 2007.....................................

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 (PDF - requires Acrobat Reader or equivalent software - 51 kB).

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