CONSULTATION RESPONSE

Consultation on options for changes to the organ donation system in Wales.

Deadline for responses: 3rd August 2009

Please use this profoma to respond to the consultation.

Name: ..........GARETH DAVIES (CHAIR)

Organisation: ....WELSH KIDNEY PATIENTS ASSOCIATION

Address (including postcode): ..... LAKESIDE OFFICES, UHW, CARDIFF CF14 4 XW

E-Mail ... NOT APPLICABLE ... address:

Are you responding as an individual?        NO

If no, on behalf of which organisation are you responding?

Welsh Kidney Patients Association

If you are responding on behalf of your organisation how were the views of your colleagues ascertained?

Our support for a change in the law to one of presumed consent (soft option) was carried by a vote taken at our AGM in 2006.The WKPA submitted a petition to the WAG Petition Committee in July 2007 requesting the Assembly takes steps to ask for legislative power to introduce a change in the law in Wales to an opt out system. In addition, in July 2009 we surveyed our members asking them to agree or disagree with the three questions listed in the consultation and have also received responses to the same survey through our website. The result of this current survey is shown in Appendix A of this response. Appendix B of this response is the result of our on-line mini poll which has been running since March 2008. Both these surveys confirm that our members remain in favour of a “soft” opt out system being introduced in Wales.

The Welsh Assembly Government intends to publish the responses to this document in full on its website. Normally, the name and address of its author are published along with the response, as this gives credibility to the consultation exercise. If you do not wish to be identified as the author of your response, please state this expressly in writing to us.

Consultation Scope:

This consultation exercise is seeking views on three possible options:

1. Do nothing - leave the current organ donation consent system as it is and
focus on awareness campaigns and implementing the UK Organ Donation
Taskforce recommendations.

2. In addition to focussing on awareness campaigns and implementing the UK
Organ Donation Taskforce recommendations, consider legislative options to
change the organ donation consent system in Wales to a soft opt-out system

3. No legal change but implement a system of obtaining and recording consent involving primary care (in addition to focussing on awareness campaigns and implementing the UK Organ Donation Taskforce recommendations).

Consultation Questions

Question 1: Should the Welsh Assembly Government leave the current organ
donation consent system as it is and rely on annual awareness campaigns and implementing the UK Organ Donation Taskforce recommendations?

NO.

It has been well documented that there are not enough organs donated to meet the current demand. There are over 400 people on the waiting list in Wales and approximately 7000 in the UK. Approximately 3 people a day die whilst waiting for an organ transplant. The WKPA, which was established in 1982, has taken an active role in increasing donor awareness through events organised for National Transplant week and by sending Welsh adults and children to take part in the Annual British Transplant games, the main aim of which is to increase donor awareness. More recently the WKPA has arranged events in Wales for World Kidney Day and is still promoting the Donate Wales and Save Sian campaigns.
Whilst these campaigns are excellent and the WKPA will continue to promote organ donation at every opportunity, it is clear that the UK’s percentage of organ donors falls well below those of other European counties. The Organ Donor Taskforce recommendations are welcome by the WKPA and are recognised as a major step forward in increasing the number of organs that may become available for transplantation. However, with the financial constraints on the NHS it is always possible that not every NHS Trust or LHB will be able to fund the necessary posts and infrastructure needed to maintain national organ donor awareness amongst NHS hospitals.

Question 2: Should the Welsh Assembly Government look at legislative options to change the organ donation consent system in Wales to a soft opt-out system?

It is apparent from the Assembly’s findings stated in the consultation paper that the people of Wales have is a clear preference for either an opt out system or one of mandated choice, with a further preference for a “soft” option. This is a clear message from Welsh people that the Welsh Assembly Government has public approval to look at the legislative options to change the organ donation consent system in Wales to a soft opt out system. On behalf of our members, especially those who are awaiting an organ transplant, the WKPA would welcome such action

Question 3: Do you have any suggestions about what the Welsh Assembly
Government should consider if a legislative options where taken forward to introduce a soft opt-out system in Wales?

Should the Assembly introduce a soft opt system is introduced in Wales, there are several considerations that should be taken into account:-

1) An on- going public awareness of  how a soft opt- out system would operate, should be introduced,  incorporating a strong message that anyone against presumed consent has the choice to opt out and clear instructions on how that can be achieved.

2) Liaise with the NHS Trusts in Wales to ascertain what infrastructure is in place in each DG hospital, and to ascertain what, if any of the Organ Donor Taskforce‘s recommendations each Trust has introduced

3) Liaise with all health professional and involve them in the new system should it be introduced into the NHS in Wales. Especially those staff members who would be likely to be responsible for the care of a prospective donor and donor families. It is essential that these crucial staff members feel at ease with the soft opt out system

4) Liaise with the transplantation health professionals working in Wales to ascertain the current position regarding the new Transplant unit at UHW and its ability to cope with any increase in donor organs. To ascertain how an increase in organ donation would affect the retrieval teams involved in harvesting donor organs

5) Liaise with NHSBTransplant to ensure that the allocation system currently in place will be maintained in the light of increased donor organs being made available. With particular view to the use of organs where there are no facilities in Wales e.g. heart transplants.

Question 4: Should the Welsh Assembly Government look at implementing a system of obtaining and recording consent involving primary care?

YES.

The consultation paper concludes that there is a desire on behalf of the public for primary care involvement. BMA Cymru in its document “Saving Welsh Lives- the case for Presumed Consent” 2006 supports the introduction of a soft option in Wales. It follows, therefore, that the majority of doctors are in favour of this system. Primary care teams are in an excellent position to advise their patients on what a soft opt out system entails and also to advise patients on how one can opt out if that is the individual’s wish. This should run parallel to the Welsh Assembly Government seeking legislative power to introduce a change in the law on organ donation consent in Wales

Any other comments:

As stated in our response to the Call for Evidence Committee Inquiry held last year, the WKPA’s has an interest in improving the availability of organs and any bias shown is because we understand the desperate need of those waiting for a transplant. However, it should be remembered that we too have families, friends and people for whom we care. It is not in the interests of our members to support the introduction of any system that would be detrimental to society. We are patients with a chronic long term disease, and have received long term care from the doctors, nurses and health services workers who form the integral part of the NHS. We have complete faith in the ability of the NHS to ensure the well being and care of all patients in their care.
We support the introduction of a soft opt out system of organ donation in Wales with the confidence that it will be administered with integrity.

July 2009