Memorandum by Kidney Wales Foundation
1. The Kidney Wales Foundation welcomes
the opportunity to provide evidence on the vital issue of organ
donation and transplantation. This invitation comes at a most
opportune point as we have launched our People Like Us Campaign.
"People Like Us" is a radical patient centred vision
for kidney services in Wales with a view to making Wales a world
class provider of renal services. Over 400 people (and we believe
much more) are waiting for a transplant in Wales and a crisis
in organ supply faces Wales as demand increases year by year.
Our campaign aims for a new transplant strategy based on: introducing
legislation in Wales and UK for presumed consent; working with
partners to deliver a substantial increase in donors; and delivering
a new dedicated transplant unit for Wales.
2. The Kidney Wales Foundation (known for
many years as KRUF) was established in 1967. In its 40 year history
it has, through a thriving fund raising base, supported many aspects
of kidney patient care in Wales including transplantation. In
addition Kidney Wales played a major role in getting an organ
donor card attached to the new driving licence and was instrumental
in setting up Lifeline Wales—a computer register of people
willing to be organ donors in the event of their death. Our current
People Like Us Campaign aims to demonstrate the need for
improved services for kidney patients in Wales and is championed
by those patients themselves. The evidence we present below is
informed by the experiences and views of those in Wales who live
with kidney disease every day.
3. We concur with the view in the communication
from the Commission of the European Communities: Organ Donation
and Transplantation that organ transplantation offers excellent
results for patients. For those with kidney disease renal transplantation
provides the most successful and cost effective treatment for
established renal failure. However, in Wales a relatively low
number of people are receiving transplants as a consequence of
three inter-related factors:
— lack of availability of organs;
— lack of capacity to undertake
transplantation; and
— sub-optimal organisational arrangements.
4. The Policy Statement and Renal National
Service Framework For Wales produced by the Welsh Assembly Government
in the Spring 2007 states that up to 10,000 people in Wales have
renal disease and it affects all age groups. The incidence of
renal disease is rising and seems likely to do so for the foreseeable
future.
5. The demand for renal transplantation
in Wales is provided in Figure 1 and this is projected to continue
rising. In terms of provision there is one transplant unit in
Wales based at the University Hospital of Wales in Cardiff which
serves South Wales. Patients in North Wales receive their transplants
in England which is also where all paediatric transplantation
takes place. The current level of transplants is far lower in
Wales than might be anticipated as demonstrated in Figures 2 and
3.
6. The current level of organ donation in
Wales is too low. Many people wish that on their death their organs
be used to save the lives of others but have not opted in to the
current system. Kidney Wales endorses the suggestion by the Chief
Medical Officer for England and the campaign by BMA Wales for
a system of presumed consent. Even with improved conventional
donation rates the case for presumed consent remains a strong
one to vastly increase the availability of organs to meet growing
demand.
7. There has been relatively little empirical
evidence on the impact of presumed consent on donation rates.
However, a study by Abadie and Gay of Harvard and Chicago Universities
(2005) have conducted a study to examine this across 22 countries
who have introduced presumed consent systems over a 10 year period.
The study found that presumed consent had a positive and sizeable
effect on organ donation rates of some 25%-35% higher on average
in presumed consent countries.
8. Kidney Wales proposes that the law on
consent for organ donation be changed and that for purposes of
disease treatment Welsh residents are presumed to be organ donors
on death unless:
— they cannot be identified;
— the persons place of residence
cannot be identified;
— the wishes of the deceased can
be proven to be contrary after relatives have been contacted;
or
— immediate relatives object.
9. The Welsh Assembly Government (WAG) current
has no powers over organ donation and in Wales we have yet to
have a public debate about the viability of a presumed consent
scheme. We believe the WAG has a duty to encourage a wide ranging
debate on this morally complex issue. Moreover, we believe a National
Assembly for Wales member or the WAG itself should bring forward
the appropriate legislative framework to draw down to the National
Assembly the power to determine how organ donation is facilitated
in Wales. Once this happens an Assembly Measure could be debated
and passed to facilitate Presumed Consent in Wales.
10. Kidney Wales Foundation as pioneers
in the development of organ donor cards would positively endorse
the proposal of a European donor card. This, we believe, would
contribute to increasing the number of organs available. We would
welcome further work to examine the potential for reciprocal organ
donation arrangements across Europe. In Wales patients currently
sometimes receive organs from Spain and discussion on how this
might be developed should be taken forward.
11. We recognise the very difficult issues
associated with the trafficking in organs and of patients travelling
to, often less affluent countries, to receive organs. However,
from a patient perspective of despair and personal anguish we
believe it is important not to judge those who feel they have
no other option. Kidney Wales believes that the way to avoid this
challenging practice is to develop a transplantation system for
Wales that meets demand.
12. The general organisation of transplantation
services in Wales is sub optimal and needs to be improved. In
the past NHS Wales has relied on UK Transplant (UKT) to manage
its donor campaigning. UKT is an operating division of NHS Blood
and Transplant, which is an England and Wales Special Health Authority
with a key role to ensure that donated organs are networked and
allocated fairly. UKT also manages the National Transplant database
and maintains the National Organ Register. Although the WAG works
with UKT to identify Welsh specific campaigns Kidney Wales believes
that UKT does not have a significant enough presence in Wales
and the level of dialogue between UKT and the WAG appears to be
minimal. In 2006-07 just one meeting was held between WAG and
UKT.
13. NHS Wales has set a strategic target
that 725,000 people in Wales should be registered as organ donors
by March 2008. However, there is little evidence of how this objective
will be achieved. No budget agreed for 2007-08. In particular
the amount of funding provided by the WAG has not been sufficient
to ensure this change. In 2004-05 and 2005-06 just £35,000
per annum was allocated and although this rose in 2006-07 to £55,000
this was as a result of a specific one-off leaflet campaign. This
must be placed in the context of an overall budget for the health
service in Wales of around £4.5 billion.
14. Kidney transplantation in Wales is also
being held back by a lack of facilities. There is a clear need
to develop the Renal Transplant Unit in Cardiff. Cardiff and Vale
NHS Trust, which runs the University Hospital of Wales, has presented
to Health Commission Wales (the body that commissions specialised
health services in Wales) a draft business case to develop the
unit but we have yet to see any real progress on this.
15. Transplant provision for children in
Wales also needs to be significantly improved. Clinical governance
dictates that as result of the relatively low incidence of renal
disease in children compared with adults optimal care of children
with complex renal disease should be managed from a single centre
in Cardiff. This further supports the case for a developed Renal
Transplant Unit located in the University Hospital of Wales.
16. We believe that a small country like
Wales in Europe can be better served on renal health issues. We
would like the Committee to consider the following:
— Firstly, a UK and European wide
call for a change in legislation on presumed consent.
— Secondly, how organisations
like UKT work effectively with charitable organisations in Wales
and other regions on promotion and awareness.
— Thirdly, that all UK and European
regions have a fair amount of allocated funds to spend on donor
awareness.
— Fourthly, a European Donor Card
be activated and enabled as soon as possible while waiting for
a Directive on presumed consent.
5 October 2007
Figure 1
PATIENTS FROM WALES (WELSH POSTCODE) LISTED
FOR A RENAL TRANSPLANT BY REGION OF RESIDENCE
NORTH WALES
|
| Age | Organ listed
| Active | Suspended
| Total |
|
| Paediatric (<18y) | kidney
| 1 | 1
| 1 |
| Adult | kidney
| 45 | 22
| 67 |
| pancreas
| 2 | 1
| 3 |
| kidney/pancreas
| 6 | 1
| 7 |
| Total Adult | | 53
| 24 | 77
|
| Total | | 54
| 25 | 79
|
|
MID AND
WEST WALES
|
| Age | Organ listed
| Active | Suspended
| Total |
|
| Paediatric (<18y) | kidney
| — | —
| — |
| Adult | kidney
| 75 | 19
| 94 |
| pancreas
| — | 1
| 1 |
| kidney/pancreas
| 4 | 1
| 5 |
| Total Adult | | 79
| 21 | 100
|
| Total | | 79
| 21 | 100
|
|
SOUTH EAST
WALES
|
| Age | Organ listed
| Active | Suspended
| Total |
|
| Paediatric (<18y) | kidney
| 6 | —
| 6
|
| Adult | kidney
| 179 | 43
| 222 |
| pancreas
| 3 | 2
| 5
|
| kidney/pancreas
| 2 | 1
| 3
|
| Total Adult | | 184
| 46 | 230
|
| Total | | 190
| 46 | 236
|
|
Figure 2
ADULT TRANSPLANTS THAT TOOK PLACE IN AND FROM WALES FROM
2004 TO 2007 (MARCH)
|
| | Cardiff
| Liverpool |
|
| 2004-05 | 83
| 16 |
| 2005-06 | 78
| 16 |
| 2006-07 | 89
| 13 |
|
Figure 3
WELSH PAEDIATRIC TRANSPLANTS TAKING PLACE IN ENGLAND
|
| 2004-05 | 7
|
|
| 2005-06 | 5
|
| 2006-07 | 7
|
|
NB: Figures provided by Welsh Assembly Government Answers
to Kidney Wales Questions 3 July 2007.
| 
