Wales organ donation opt-out: Health committee backs bill with reservations

The health committee says the Welsh government needs to ensure the Bill is much clearer about the role of the family

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A group of assembly members has backed the proposed opt-out organ donation bill but raised significant concerns.

The health committee called for clarity about the family's role, the cost of a communications campaign, and health service resources.

The proposed Human Transplantation Bill would change the organ donation system in Wales.

People will have deemed to have consented to their organs being donated unless they have opted-out in advance.

After weeks of evidence taking, a clear majority of committee members said they believed it should progress to the next step.

The two Conservative committee members were against because they do not agree that the system should be introduced.

'Difficult and challenging'

Start Quote

We urge the Welsh government to set out its position in a clear and consistent manner from this point forward”

End Quote Vaughan Gething AM Health committee chair

Among the main concerns raised were:

  • The role of the family in giving consent to the removal of organs. AMs described evidence by former Health Minister Lesley Griffiths as "inconsistent" and called on her replacement, Mark Drakeford, to come up with a "definitive" statement about whether family members should have a veto or not and ensure it is clearly written in.
  • The proposed communications campaign. AMs said it was crucial to the success and lawfulness of the bill that everyone affected was fully aware of the change in the law. They said they were "unconvinced" by the £2.9m budget set aside.
  • The impact of health service resources. AMs heard that critical care beds in Wales are working at close to or even over capacity in some areas. They said the minister should publish a detailed plan for the future of critical care capacity in Wales, including how it should be resourced, and how these would relate to the bill.

Health committee temporary chair Vaughan Gething said scrutinising the Bill had been a "difficult and challenging process".

'Clarity and consistency'

Start Quote

I am determined and committed to putting deemed consent on to the statute book here in Wales”

End Quote Mark Drakeford Health Minister

But he added: "We have agreed, by a clear majority, that it should proceed to the next stage of the legislative process. Organisations and individuals on all sides of this delicate and at times emotive debate have made compelling points both for and against the bill.

"But the principal objective of the bill - the need to increase the number of organ transplantations in Wales and to save more lives - cannot be ignored, and it is the one point on which everyone is agreed.

"The committee has significant concerns over how the issues of consent have been set out and explained. In particular we have remaining concerns over the role and involvement of family and friends.

"We urge the Welsh government to set out its position in a clear and consistent manner from this point forward.

"Without that clarity and consistency there is a real risk that there will not be public confidence in a deemed consent system. Clarity is equally important for the medical staff who will be handling these difficult situations."

'Change the culture'

Earlier, the health minister hinted in a BBC Wales interview that he will look to make changes to the legislation.

Mark Drakeford said, "We have to be sure, for clinicians as much as anything else, that they know where the law is firm under their feet in the new world we are moving into.

"I am determined and committed to putting deemed consent on to the statute book here in Wales because I think it will it will change the culture around organ donation, and will help, as one of a series of measures, to increase the level of organ donation.

"But in doing so it is very important that those people who have to navigate their way through an incredibly tense and difficult set of circumstances, when the real decisions are being made, know where the law is."

Mr Drakeford also said he would "take very seriously the role of the family" and it was one of the most important issues raised by the public.

He said the law would not "ride roughshod" over strong feelings by close family members.

The bill will now move to stage two of the legislative process, where a significant number of amendments are expected.

Roy Thomas, of Kidney Wales, which is campaigning for an opt-out system, said better communication was needed with the public.

"Nothing in the evidence or conclusions have jumped out at us to say that this is bad law," he said.

"It will change the culture in the UK and it needs changing as patients on the transplant waiting list are in desperate need."

But Roger Goss, of the campaign group Patient Concern said automatically classifying everyone as a potential donor may lead to the public fearing "harvesting organs has become more important than providing the best possible care" and lead to fewer donors.

He added: "Requiring every adult to record whether they want to be a donor or not or leave the decision to relatives would remove this danger - also the moral ignominy in pretending consent exists when it doesn't."

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