Written Response to the Health, Wellbeing and Local Government Committee Inquiry into Presumed Consent for Organ Donation by Edwina Hart, the Minister for Health and Social Care

September 2008

Executive Summary

The Assembly Government considers that the Committee’s report does not reflect adequately the evidence it received on the strength of opinion in relation to presumed consent nor does the report acknowledge some of the actions already announced in relation to organ donation and transplantation by the Welsh Assembly Government.

The Assembly Government is very keen to see improvements in the services and infrastructure that supports organ donation and transplantation for the benefit of the Welsh population. It has already indicated its support for the UK Organ Donation Taskforce recommendations and the Minister for Health and Social Services has agreed to establish a Wales Organ Donation Implementation Group to oversee their implementation and has appointed Dr George Findlay, consultant in intensive care medicine at University Hospital of Wales, as Chair of this group.

The Welsh Assembly Government sets out below its response to the Report’s individual recommendations.

Detailed Responses to the report’s recommendations are set out below:

Presumed Consent

The Committee recommends that:

The Assembly should not at this stage seek a Legislative Competence Order, to allow the introduction of a system of presumed consent in Wales.

Response: Reject

Comment:

The Welsh Assembly Government believes it is premature to rule out seeking a Legislative Competence Order at this stage. The Committee did not oppose presumed consent in principle and the Assembly Government intends to keep a Legislative Competence Order to this end under active consideration.

It will do so against the background of continuing public debate about this matter in Wales and is looking carefully at how to best to capture public opinion and further increase awareness and understanding about organ donation.  The Minister for Health and Social Services will also carefully consider   the advice and recommendations of the UK Taskforce, following its investigation of presumed consent, expected this autumn.  

Once there is a clear understanding of public opinion in Wales on the issue of presumed consent, the Assembly Government will consider the need for a legislative change.

Financial implications:

The financial implications of any proposed legislation in the future would need to be worked through at that time.

The Committee recommends that:

In any future detailed consideration of legislation to introduce presumed consent in Wales or in the UK a "soft” system should be used, where loved ones are consulted and their views taken into account.

Response: Accept in principle

Comment:

Once there is a clear understanding of public opinion in Wales on the issue of presumed consent, the Assembly Government will consider the need for a legislative change.

Financial implications:

The financial implications of any proposed legislation in the future would need to be worked through at that time.

Capacity Issues

The Committee recommends that:

In anticipation of increased donations flowing from the UK Organ Donation Task Force (ODTF) recommendations, that the Assembly Government should review transplant capacity within Wales to see whether further expansion is justified. Any review should consider the possible viability of facilities located regionally in addition to Cardiff.

Response: Accept in principle

Comment:

The Assembly Government notes that the report acknowledges the central funding for a new dedicated renal transplant unit for South Wales. The Assembly Government will continue to keep transplant capacity under review and further funding for infrastructure is being considered alongside other pressures as part of the budget planning process.

The new dedicated renal transplant unit in Cardiff and the continued use of Liverpool and Manchester for renal transplants in North Wales is expected to provide the physical adult renal transplant capacity in Wales to meet the 50% growth in transplant activity predicted by the UK Organ Donation Taskforce.  

Welsh patients requiring non-kidney transplants (heart, lung and liver) and children requiring transplants will continue to have their transplants in specialist centres in England for the foreseeable future. This is due to the critical mass of transplant procedure numbers required to ensure safe clinical practice, which also limits the potential to expand renal transplantation to other centres in Wales.  Clinical evidence shows that increased activity usually equates to better outcomes and in addition to the fact that local demands for transplantation are likely to be small.  Infrastructure for these transplants outside Wales is also planned to expand to meet the 50% growth in transplant activity predicted by the UK Organ Donation Taskforce.  

Financial implications:

None.

The Committee recommends that:

The Assembly Government should consider an increase in the number of ICU beds in Wales in order to help increase the number of organs available for transplant alongside the wider implications of such a move.

Response: Reject

Comment:

The Minister for Health and Social Services has already recognised that there are issues that need to be tackled in relation to Critical Care in Wales. In her recent Ministerial Letter (EH/ML/008/08), the Minister has outlined a programme of action for the NHS to implement over the next three years.

Whilst there may be a need to increase the number of critical care beds in Wales, which is currently being considered, the Minister does not believe that an increase in the number of ICU beds is the real answer to increasing the number of donors. Rather, increased awareness amongst clinicians is key as recognised in the UK Taskforce report. There is evidence that a significant number of potential donors are not being considered for donation now. Increased clinical awareness and supportive action should increase existing donation rates.

Financial implications:

None.

The Committee recommends that:

As far as it is responsible for doing so, the Assembly Government should implement the ODTF recommendations in full in Wales as a matter of urgency.

Response: Accept in principle

Comment:

The Assembly Government has already indicated its support for the UK Taskforce recommendations and the Minister for Health and Social Services has agreed to establish a Wales Organ Donation Implementation Group to oversee their implementation and has appointed Dr George Findlay, consultant in intensive care medicine at University Hospital of Wales, as Chair of this group.   The Minister wants to ensure that this implementation process is clinically led and that the views of the Welsh Assembly Government on organ donation are fully represented and can appropriately influence the organ donation and transplantation agenda on a UK wide level.

Financial implications:

It is estimated that it will cost £1.8m in 2009-10 to implement the UK Taskforce recommendations in Wales. These costs will need to be considered alongside other pressures when setting the health budget for future years.

The Committee recommends that:The Assembly Government ensures that a comprehensive training programme is developed to make the improvements needed to the training for healthcare professionals to ensure that the ODTF recommendations are implemented properly.

Response: Accept in principle

Comment:

The Wales Organ Donation Implementation Group which the Minister for Health and Social Services is establishing to direct and oversee the implementation of the UK Taskforce recommendations will need to consider the training needs of health professionals.  

Financial implications:

It is estimated that it will cost £1.8m in 2009-10 to implement the UK Taskforce recommendations in Wales. These costs will need to be considered alongside other pressures when setting the health budget for future years.

Operational Issues

The Committee recommends that:

The Assembly Government names UK Transplant (UKT) as a body required to prepare a Welsh Language Scheme under the Welsh Language Act 1993.

Response: Accept

Comment:

This is already in place. NHS Blood and Transplant, of which UK Transplant is an operating division, is listed as a public body under the Welsh Language Act 1993 by virtue of the fact that it is an England and Wales Special Health Authority. It has a Welsh Language Scheme in place which was developed in conjunction with the Welsh Language Board.

Financial implications:

None

The Committee recommends that:

The Assembly Government should review with UKT how it operates to ensure that it has a clear focus in Wales and on issues specific to Wales.

Response: Accept in principle

Comment:

Discussions will be held with UK Transplant about how it operates in relation to Wales in the context of the reorganisation of the NHS as well its interaction with the Wales Organ Donation Implementation Group being established by the  Minister for Health and Social Services to direct and oversee implementing the UK Taskforce recommendations.

Financial implications:

None

The Committee recommends that:

The Assembly Government should review its financial contribution to UKT to ensure that funding is clearly aligned with service delivery that is responsive to the needs of Wales.

Response: Accept

Comment:

The Minister for Health and Social Services has already asked officials to review Wales’ current funding to UK Transplant. The outcome of this review will inform the discussions to be held with UK Transplant on how it operates in relation to Wales and the role it should play in supporting the implementation of the UK Taskforce recommendations in Wales.

Financial implications:

None.

Public Awareness Raising

The Committee recommends that:

The Assembly Government carries out a full evaluation of the Tell a Loved One publicity campaign with a view to either extending the campaign or building on it through a consistent programme of public awareness-raising campaigns.

Response: Accept in principle

Comment:

The Assembly Government accepts the importance of carrying out an evaluation Tell a Loved One campaign. This will, however, be a matter for Kidney Wales Foundation and the other charities involved, which have led the campaign.  Indications are that the Tell a Loved One campaign has been a great success for Wales in raising public awareness of the issues surrounding organ donation.  The campaign will be evaluated to consider the impact on donor registrations and relative refusal rate.  The Assembly Government will be working closely with the charitable sector in the coming year to ensure the momentum of the campaign is maintained and built upon.  Furthermore the planned public debate on the matter of presumed consent will aim to increase understanding and awareness of a wide range of organ donation issues.

Financial implications:

Any Assembly Government financial contribution to further campaigns in the future will be considered at that time.

The Committee recommends that:

In future publicity campaigns particular attention should be paid to the needs of ethnic minority communities in Wales and how the donation rate among ethnic minorities might be improved.

Response: Accept

Comment:

In the light of the evaluation of the current campaign, the Assembly Government will work closely with the charitable sector to ensure that any future campaigns maximise opportunities to address hard-to-reach groups such as minority ethnic groups and young people.  UK Transplant already has schemes in place that specifically target minority ethnic groups and young people across the UK.

Financial implications:

None at this stage, but may have a financial implication when any future campaigns are considered.

The Committee recommends that:

The Assembly Government explores how public sector bodies in Wales can publicise the Organ Donation Register and Donor Cards in the normal course of their work, including the possibility that their websites include a prominent link to the Organ Donation Register website.

Response: Accept in principle

Comment:

The Tell a Loved One campaign has already targeted the public sector. The Assembly Government will keep under regular review what further action could help raise awareness of the Organ Donor Register. Such action might include working with trade unions to promote campaigns in the workplace of both the public and the private sector and making effective use of websites.  

Financial implications:

None at this stage, but may have a financial implication when any future campaigns are considered.