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Questions over success of organ donation scheme.

Byline: Martin Shipton Chief reporter

HAILED as a "bold step", Wales' presumed consent law aimed to revolutionise organ donation here.

But two years after its introduction, some are now questioning whether the legislation has made any real difference to Welsh patients waiting for transplants.

On tonight's Y Byd ar Bedwar on S4C, Llio Dudley, 24, from Garndolbenmaen, Gwynedd who herself received a kidney from her sister two years ago, travels around Wales to discuss presumed consent meet some of the 242 people currently on the transplant waiting list in Wales.

At the NHS Blood and Transplant (NHSBT) office in Tongwynlais, she met specialist nurse Lucy Barnes, who was called by doctors to discuss organ donation with a patient's next of kin when survival seemed unlikely. Explaining the process, she said: "We look at the organ donation register to see whether somebody's made a decision regarding organ donation - whether they've opted in or out.

Then, it's a conversation with the family. We have to ensure they understand the situation, that the patient isn't going to recover. We give them time to come to terms with that news, and then we discuss organ donation as an option."

The Welsh Government released statistics earlier this month showing that the families of 21 Welsh patients refused to release the organs of their loved ones for donation last year.

But Llio is surprised that families can still determine whether or not their loved one's organs are donated despite the new law: "I must say I don't really understand it.

"Nurses still speak with families even if the patient has opted in. If someone has done that, why is a conversation necessary? That person has made their decision."

Statistics for Wales show there has been a 10% increase in the number of people on the waiting list compared with two years ago (an increase from 220 to 242). The number of transplants to Welsh patients from deceased donors appears to have remained fairly steady, with 157 in 2013-14, 128 in 2014-15, 168 in 2015-16, 135 in 2016-17 and 67 in the first two quarters of this year. However, 27 Welsh patients died waiting for a transplant in 2015-16 and 22 in 2016-17. There were 16 deaths in the financial year before the new law came in to force.

Health Secretary Vaughan Gething maintains these statistics do not demonstrate the policy has failed. He told Llio: "It's hard to say it's got anything to do with the policy. More people have opted in. But more people have actively taken the decision to opt out too. And that's got to be real because there was a real fear the state were going to make a decision on behalf of patients.

"I hope we'll see an improvement in the number of donations taking place. The first two years were always going to be difficult. This next year, we're really focusing on the importance of the family conversation.

"But after five years, I think we'll be in a more rounded place to see whether it has really made a difference to look at the numbers of that five years and see where we are. I certainly hope we'll see an improvement in the number of donations taking place."

Since the law was implemented on December 1 2015, the Welsh Government say the presumed consent law has been applied 64 times. But the organs of just 27 of those people have been transplanted to patients - a total of 80 organs.

According to the NHSBT, it is impossible to say these are additional organs as the families would previously have been consulted.

After her journey, Llio feels disheartened by the lack of progress: "Two years ago, when the law was implemented, I had high expectations that the presumed consent law would make a big difference to those on the transplant waiting list in Wales.

"After looking at the statistics and speaking to people all over Wales, there doesn't seem to be much difference at all since the law came into force. That's disappointed me - I hoped there would have been an improvement in two years."

But she remains hopeful more people in Wales are now discussing organ donation and that this will lead to a rise in organ transplants here in the future. | Y Byd ar Bedwar: Aros yn ofer? (Waiting in vain?) will be broadcast tonight at 9.30pm.
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Publication:Western Mail (Cardiff, Wales)
Geographic Code:4EUUK
Date:Nov 21, 2017
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