More than 12,000 people in the UK have died or been removed from the transplant waiting list over the past ten years
Becks and Toby Fletcher’s six-month-old daughter, Rory, is on the urgent heart transplant waiting list(Image: NHS Blood and Transplant)
More than 740 people in the North West lost their lives waiting for an organ transplant in the past decade – including 109 in Merseyside. The UK transplant waiting list has reached record levels, with more than 8,000 people living on borrowed time as they desperately wait for a life-saver to come along.
More than 12,000 people in the UK have died or been removed from the transplant waiting list over the past ten years before receiving the lifesaving organs they desperately needed, according to the NHS Blood and Transplant service.
Figures released to mark Organ Donation Week show that 4,900 people died while actively waiting for a lifesaving transplant, and a further 7,700 were removed from the active list after being deemed too sick to receive one, with many dying soon after, highlighting the urgent need to increase organ donation registrations.
Earlier this year, NHSBT revealed the transplant waiting list had reached its highest level ever recorded with 8,000 people actively waiting for a lifesaving transplant – including 915 in the North West. Meanwhile, there were 100 fewer deceased organ donors in the UK last year, resulting in a 2 per cent drop in life-saving transplants.
Anthony Clarkson, director of organ donation and Transplantation at NHS Blood and Transplant, said: “Someone will die today waiting for an organ transplant.
“You are more likely to need a transplant than you ever are to be a donor – and most of us would accept an organ if we needed one – but far fewer of us have made the decision to donate. By confirming your decision on the NHS Organ Donor Register, you could save or transform up to nine lives.”
Despite the challenges, there has been promising progress. More than 44,000 lives have been saved or improved through deceased and living donor organ transplants in the past decade.
But with thousands still waiting, NHSBT is urging people to take just two minutes today to confirm their decision to be an organ donor.
One family who are desperately hoping that the call will come in time is Becks and Toby Fletcher, whose six-month-old daughter, Rory, is on the urgent heart transplant waiting list.
Rory has dilated cardiomyopathy where her left ventricle is stretched and enlarged and can’t pump blood properly. She is currently in intensive care at the Freeman Hospital in Newcastle on a ‘Berlin Heart’ – a mechanical heart pump – to support her left ventricle.
Rory is one of the smallest children on the transplant waiting list(Image: NHS Blood and Transplant)
Becks, 31, from Knutsford in Cheshire, said: “I had the smoothest of pregnancies. I had to be induced at 10 days over and I had a C-section. As soon as she was born though it was clear something was wrong. We didn’t know if we were expecting a girl or a boy, and by the time they’d announced she was a girl, she’d turned blue and was whisked away by the nurses. She didn’t even get passed to me, no skin to skin.
“Now, I am in ICU with her pretty much all day every day. Toby has had to go back to work, but he visits as much as he can around that.
“We know Rory is one of the smallest children on the transplant waiting list, which means she is not ‘competing’ against others but on the other hand not many organs are donated from babies, so there are less hearts available in her size.
“To get a heart and take Rory home would just be incredible. At this point, we’d love to just have any glimpse of a normal life – taking her on a walk out of the hospital, picking her up without worrying about machines and wires, even just hearing her laugh or cry. There are so many milestones and normal things we’ve never experienced.
“Toby and I are both on the Organ Donor Register, but donation was not something we’d ever talked much about before. I always just assumed I would have a healthy family, and everything would be fine. It has just totally blown our world apart.
“We would just be so grateful to the donor family if she had a transplant. It’s a horrible situation for anyone that loses a child, and not one you ever want to think about. But I try to think of it that, if you can come away and turn something negative into something positive for another family, why wouldn’t you? It would mean everything to us.”
Anthony Clarkson added: “It’s really concerning to see the numbers of people waiting for a transplant slowly rising and people are dying needlessly every day because of the shortage of organs for transplant. We really need people who want to be a donor after they die to make it clear to their families and encourage them to support that decision.
“Last year, 90% of families honoured their loved one’s decision to become a donor when they had recorded their decision on the NHS Organ Donor Register, which made those conversations with families so much easier. People are far more likely to support donation when they know it’s what their relative wanted.
“I would urge everyone in the North West who supports organ donation to register their decision and make it clear that it’s what you want should the worst happen. It only takes 2 minutes to register but it could save the lives of people who so desperately need a transplant. Please sign up. It’s the best thing you’ll do today.”
Anthony Clarkson, director of organ donation and Transplantation at NHS Blood and Transplant(Image: NHS Blood and Transplant)
Last year, 173 UK families overruled their relative’s registered or expressed decision to donate. In a further 520 cases, families did not support donation where the law presumes consent – meaning their loved one had not registered to opt out but also hadn’t expressed any decision. This means thousands of missed opportunities for people to receive a lifesaving transplant.
Under the ‘opt-out’ system donation can still only go ahead with the family’s support, which is why it remains so important to have the conversation and leave your loved ones certain of your decision.
To find out more, and confirm your support for organ donation, visit: www.organdonation.nhs.uk, call 0300 123 23 23 or use the NHS app.