Memorandum by the Welsh Kidney Patients
Association
1. EU—WIDE
SHORTAGE OF
ORGANS AVAILABLE
FOR TRANSPLANTATION
There is no doubt that there is a severe shortage
of organs throughout the EU. It is disappointing that the UK has
a poor record on this issue and is second from the bottom of the
league. Only Greece has a lower percentage donation rate than
the UK.
2. ORGANISATION
OF ORGAN
DONOR AND
TRANSPLANTATION SYSTEMS
There are several different methods of raising
donor awareness and therefore different rates of organs retrieved
across the EU countries. The infrastructure in each country differs.
However, some countries, eg Spain, have higher donation rates.
The methods and infrastructure used in these countries that have
proven higher donation rates should be evaluated and good practise
shared with those countries that do not have similar donation
rates.
3. RAISING PUBLIC
AWARENESS OF
ORGAN DONATION
INCLUDING THE
IDEA OF
A EUROPEAN
ORGAN DONOR
CARD
UK Transplant and the Dept of Health fund publications
and donor registration cards, however, not enough is done to raise
awareness of the benefits of organ donation. There should be a
television and media campaign aimed at showing these benefits
that are felt by donor families as well as recipients. This should
lead up to introducing a law on "presumed consent" as
advocated by the Chief Medical Officer of Health for England,
the BMA and the Welsh Kidney Patients Association. A European
donor card would be a welcome initiative and would lead to an
increase in donated organs, but this should be in addition and
not instead of Individual Member State organ donor cards.
4. USE OF
VOLUNTEER LIVING
DONOR
The Human Tissue Act introduced in September
2006 has allowed for altruistic living donation and pooled and
shared living donation. This is strictly monitored and as such,
should be free from abuse. No one should feel pressurised into
donating an organ, either for financial gain or from emotional
feelings towards relatives. However, those involved in the decision
making to approve or not approve altruistic living donation should
not be bound in too much red tape that the decision takes a long
time to make
5. ENSURING THE
QUALITY AND
SAFETY OF
CROSS-BORDER
ORGAN DONATION
WITHIN THE
EU
It is essential that the quality and safety
of every organ used throughout the EU is monitored and robust
systems of testing and checking the donor's medical records should
be in place in every EU country.
6. ETHICAL ISSUES
RELATING TO
ORGAN DONATION
AND TRANSPLANTATION
An individual's human rights and spiritual beliefs
should be respected and taken into account at all times. The prospective
donor family should be respected at all times. However, many ethnic
groups have very low refusal rates due to religious beliefs, superstition
or lack of understanding of organ donation, These groups should
be approached with an education programme to inform and highlight
the benefits of transplantation to the community as a whole.
7. HEALTH AND
SOCIAL WELFARE
BENEFITS OF
ORGAN TRANSPLANTATION
There is no doubt that organ transplantation
is the best treatment for end stage renal failure and the only
treatment for heart, lung, and liver failure. Patients who have
a good functioning graft are able to return to work, raise their
children and contribute fully to society. This is an immense saving
in benefits and state payments. With regard to kidney transplantation
the saving on not having to provide dialysis is estimated
as £10,000 per annum. With the average graft lasting 11 years,
this is a saving of over £100,000 per patient. There is a
rising need for haemodialysis of between 7% and 10% per annum
in the UK. There is lack of dialysis capacity throughout Wales
and many areas of the UK.. Were there sufficient donated organs
to transplant every patient who would benefit and was clinically
able to have a transplant, the overall saving would be immense.
8. MEDICAL RISKS
OF ORGAN
TRANSPLANTATION
Recipients should be advised of the all the
risks involved during the operation and of rejection post transplantation.
The side effects of the immuno suppressants should be fully explained
to every patient. Any problems with the donated organs should
be discussed with the recipients so that an informed choice can
be made on whether or not to accept the organ. Strict criteria
are in place in the UK when identifying possible donors. These
or equally robust criteria should be practised throughout the
EU to protect the prospective donors.
9. ILLEGAL TRAFFICKING
IN ORGANS
All illegal trafficking of organs throughout
the EU and the world should be stopped. The trade in organs in
the under developing world is deplorable. There should be no need
for residents of one EU Member State travelling to another member
state, or any country throughout the world with an intent to "purchase"
organs of vulnerable people. This also leads to the possibility
of illegal traffickers hiding behind such trading. If there were
sufficient cadaver or altruistic living donors there would be
no waiting lists and there would be no market for illegal organs.
10. QUESTIONS
WHICH MAY
ARISE IN
RELATION TO
ORGAN DONATION
AND TRANSPLANTATION
FROM A
FAITH-BASED
POINT OF
VIEW
There are certain faiths that have objections
to the principal of cadaver organ donation and these views must
be respected. However, an educational programme could be devised
to promote the benefits of organ donation specifically directed
at individual faiths.
11. QUESTIONS
WHICH MAY
ARISE IN
RELATION TO
ORGAN DONATION
AND TRANSPLANTATION
FROM THE
POINT OF
VIEW OF
POPULATION SUB-GROUPS
WITHIN THE
UK
The donation rate among some sub groups in the
UK is very low and patients from these groups have had to wait
longer than other patients for a suitable organ. UK transplant
has developed new criteria to try to address this problem. However,
some patients groups maintain that the "best matched"
principle should not be over-rided unless the recipient is in
a critical condition.
12. THE "PRESUMED
CONSENT" APPROACH
FOR IDENTIFYING
ORGAN DONORS
(UNDER WHICH
A WILLINGNESS
TO DONATE
ORGANS BECOMES
THE DEFAULT
POSITION AND
PEOPLE WISHING
TO OPT
OUT FROM
THIS NEED
TO MAKE
THIS KNOWN
Kidney patient groups were extremely disappointed
that the government brought in the three line whip to stop the
proposed law on "presumed consent" passing through parliament
two years ago. BMA Cymru/ Wales has approached the Welsh Assembly
government to introduce a law implementing "presumed consent"
in Wales. The WKPA support this. Kidney Wales Foundation, with
the support of the WKPA and patients, have met with the Minister
of Health for Wales on 5 Setember 2007 and raised this issue.
The Minister has said that the possibility would be "explored"
The Chief Medical Officer of Health for England stated in his
report (July 2007) that "presumed consent" should be
introduced in the UK. In Member States of the EU where "presumed
consent" is the law, there is a noticeable higher rate of
organ donation. The transplant infrastructure in the UK would
need investment to facilitate the increase transplant operations
if this law is passed. Before such a law is introduced there should
be a wide ranged consultation and public awareness programme.
13. THE ARRANGEMENTS
FOR TAKING
INTO ACCOUNT
THE VIEWS
OF RELATIVES
ABOUT REMOVING
ORGANS FOR
TRANSPLANTATION FROM
A DECEASED
DONOR (BOTH
UNDER THE
PRESENT SYSTEM
OF "OPTING
IN" OR
UNDER THE
"PRESUMED CONSENT"
SYSTEM FOR
IDENTIFYING DONORS)
A. "PRESUMED CONSENT" As stated
above there should be a wide ranged consultation involving the
general public outlining what is involved in this issue.The public
should be made aware that they have the right to opt out of this
law if they wished. There should be a system in place at each
hospital whereby a designated member of staff approaches the relatives
of prospective donors and explains the process of organ donation
in a sensitive way.
B. "OPT IN" The current system
is evidently not producing enough organs for transplantation.
It is known that 42% of relative refuse permission for transplantation.
(UK Transplant statistics). Some units are not "in favour"
of organ transplant and there is often no dedicated staff member
available to talk sympathetically to the relatives about organ
donation. Although there is publicity on organ donation, this
is not on the scale of government campaigns to promote obesity,
cancer or the dangers of smoking. There should be an on-going
television/radio/newspaper/web campaign to promote the benefits
of organ donation. 70% of people want to donate their organs after
death but only 20% are on the NHS Organ Donor Register. Clearly
the current system of opt-in needs to be changed to one of "presumed
consent" if lives are to be saved
14. TO PROMOTE
COOPERATION BETWEEN
MEMBER STATES
IN ORDER
TO SHARE
EXPERTISE AND
TO EXPAND
THE SIZE
OF THE
POTENTIAL DONOR
POOL IN
EACH MEMBER
STATE
There is evidence that certain EU Member States
have far higher rates of donation than others. Should the EU promote
cooperation between Member States in the way described, the potential
for increasing organ numbers would improve.
15. TO PROVIDE
A CROSS-BORDER
FRAMEWORK FOR
THE ORGANISATION
OF ORGAN
DONATION AND
TRANSPLANTATION WITH
HARMONISED RULES
THAT WOULD
PROVIDE EU CITIZENS
WITH HIGHER
STANDARDS FOR
ORGAN SAFETY
AND QUALITY
THAN CAN
BE ASSURED
BY THE
NATIONAL LEGISLATIONS
OF MEMBER
STATES ACTING
SEPARATELY
Where a Member State has an excellent infrastructure
for measuring quality and ensuring organ safety this should be
respected. However, a cross border framework for harmonising rules
and procedures to safeguard the quality and safety of the organ
should be in place to ensure that organs offered between countries
are of high quality and are above all safe.
16. TO ENABLE
MORE EFFECTIVE
ACTION ACROSS
THE EU TO
FIGHT ILLEGAL
ORGAN TRAFFICKING
The EU should take every action available to
introduce methods to prevent /fight the illegal trafficking of
organs.
27 September 2007
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