Over 600 North East and Yorkshire patients die waiting for organ transplant
Organ Donor Week is underway
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 – including more than 600 in the North East and Yorkshire.
Figures released by NHS Blood and Transplant 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 more than 900 in the North East and Yorkshire. Meanwhile, there were 100 fewer deceased organ donors in the UK last year, resulting in a 2 per cent drop in life-saving transplants.
“Someone will die today waiting for an organ transplant,” said Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and 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 desperately wish the chance of a transplant had come for their granddaughter is the legal guardians of Thalia-Beau Wright who sadly died waiting for a heart and lung transplant aged just 5.
Thalia’s nannie, Chistine Johnson, aged 49, from Scarborough, says: “Thalia was the most beautiful little soul, sassy, funny and feisty. She was so kind, caring and her beaming smile lit up the room. She was the light of our lives, our whole world. She loved all things girly and also anything spooky too! Halloween was her favourite time of the year. The beach was her favourite place to be, her happy place.”
Thalia was diagnosed with the heart condition, restrictive cardiomyopathy, when she was 4. It is a rare and serious disease causing the heart to stiffen so it cannot fill up properly with the blood it needs to pump round the body. The condition also caused pressure on Thalia’s lungs and in June 2020 she was listed for an urgent heart and lung transplant, the only treatment option available.
“We always had hope, we never once thought Thalia wouldn’t get her transplant. I refused to believe it; I couldn’t imagine a world without her in it. I had to believe she would get her call, and I did with all my heart,” said Christine.
“She struggled more and more and there was little that could be done to keep her stable whilst waiting. Every day I would think is this the day, please let this be the day the call comes to save her life.
“We were so positive and spent Thalia’s wait in hospital planning what we would do when she was better. We filled the good days with as much fun as possible and making memories, despite covid, and we had hope, so much hope. Now we’re trying to fulfil some of those dreams but sadly without Thalia.”
Christine set up The Thalia-Beau Foundation in memory of her granddaughter, which supports seriously ill children and their families.
She said; “There are so many beautiful little lives like Thalia’s, lives of all ages, that can be saved. You can give somebody the hope that they are just desperate for. You can help change their situation and change your family’s. If nothing more can be done for you, you can give the gift of life to somebody else – it keeps you alive and leaves the most positive legacy.
“People need to join the organ donor register and talk to their family, it’s important to do it now, while you’re not in the most difficult time of your life. Once you’ve signed up and told people, you don’t have to think about it again and hopefully the information is never needed.”
Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant 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 East and Yorkshire 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.”
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.