‘UK should follow Wales’ lead on organ donation’
A woman who was hours from death waiting for a liver transplant wants other UK nations to follow Wales’ lead on presumed organ donation consent.
Ellie Lacey, 31, was diagnosed with sudden and unexplained liver failure in 2016 and was told a transplant was her only hope of survival.
A worldwide search was started to find one and she eventually had her operation last January.
She is urging families to talk openly about their organ donation wishes.
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Adults in Wales are presumed to have consented to organ donation unless they have opted out, while ministers in Scotland and England are also considering moving to a similar system.
Mrs Lacey, from Cardiff, said her experience had made her even more convinced it was the right move.
“Wouldn’t it be amazing if the rest of the UK would follow Wales’ lead?” she said.
But after 21 families denied consent for organs to be given or did not support deemed consent in 2016-17, Mrs Lacey said it was “so important to have that conversation, to make sure your family know what to do in that moment of crisis”.
The keen runner and cyclist went from being a “bit tired” to needing a transplant in weeks.
At first she put her tiredness down to a combination of months of work and travelling as she and her husband, Paul, had cycled across Europe, got married in Slovenia and run a charity event in Uganda.
But her fitness had masked the seriousness of her condition and, at first, she was diagnosed with a virus.
Months later her liver was failing and she was transferred to London’s Royal Free Hospital by ambulance to wait for a transplant.
“Some moments were filled with incredible guilt that I was waiting for an organ to become available,” said Mrs Lacey.
But there were also mixed feelings when she got a donor.
“I was flooded with happiness and fear also. There was a realisation that I didn’t have to die,” she said.
“I feel a responsibility to live my life to the absolute fullest, one full of adventure and really experiencing everything I can and taking everything in and doing everything I can for others wherever I can. It’s really hammered the importance of that home very much.”
Despite a change in the law in Wales, the number of deceased donors has stayed the same.
With an average of 3.1 organs retrieved per donor, the refusal of 21 families to give consent last year could have prevented 65 transplants.
Wales’ chief medical officer, Dr Frank Atherton, said he was in contact with colleagues in Scotland and England about their plans to move to a similar presumed consent system.
He said: “I talk regularly with the chief medical officers of those countries, our cabinet secretary has written formally to England to support the consultation and at officer level we have a lot of input into helping to shape the consultation that’s going on in England and to think about implementation as Scotland moves down this road.
“It’s great to work in collaboration with our colleagues in other UK nations and we’re delighted that Wales is leading the way on this.”
The NHS Blood and Transplant service said 6,500 people across the UK were on the transplant waiting list, including 242 in Wales.