More than 12,000 people lost their lives waiting for a transplant in the past decade

More than 12,000 people in the UK have died or been removed from the transplant waiting list over the past 10 years before receiving the lifesaving organs they desperately needed, new figures reveal.

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, while there were 100 fewer deceased organ donors 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 9 lives."

Lauren's story

Lauren Cullinane, 39 and from Sutton in Surrey, knows all too well the heartbreak of time running out.

Her beloved mum, Helen, spent 3 years on the waiting list for a double lung transplant after being diagnosed with sarcoidosis — a rare autoimmune condition that causes small patches of inflamed tissue to develop in the body’s organs. For Helen, it attacked both her lungs and her skin, creating clusters of tissue that scarred her lungs, gradually reducing their function and making every breath a struggle. Sadly, the call never came in time to save Helen.

"The waiting was hard," said Lauren. "You are always in limbo wondering if the call will ever come.

"Mum never complained though. She had good days and bad days, often struggling to breathe and was on oxygen 24/7. Eventually walking became hard for her and she often had to use a mobility scooter to get around, but she didn't let it bother her. She was always so full of life and was the glue that held our little family together.

"Sadly, in 2018, mum got quite a bad chest infection and was admitted to hospital. She was taken off the transplant list as it was thought she wasn't fit enough to have a transplant at this time. We still managed to laugh as we always did and tell jokes, spend time talking about the silly things. But mum was gradually getting weaker, and soon after, devastatingly, passed away.

"Luckily, we were with her when she died and her last words to us were 'I'm so sorry about all this'. That was my mum – selfless and brave, right to the end. Always thinking of others. I miss her every day, and I so wish she could have had the chance to get the transplant she so desperately needed and deserved – but it wasn't meant to be.

"Our emotions struggled knowing that for Mum to receive her gift of life, someone else would need to go through the heartbreak of losing someone they love, but I often wonder if Mum would still be with us today if more people had had that difficult discussion with their loved ones, and signed the organ donation register"

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.

Becks' and Toby's story

One family who are desperately hoping that the call will come in time is Becks and Toby Fletcher. Their 6 month-old daughter, Rory, is on the urgent heart transplant waiting list and has been in hospital since the day she was born.

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.

Mum Becks, 31, a Public Relations Director 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.”

It only takes 2 minutes to register but it could save the lives of people who so desperately need a transplant

Statement from Anthony Clarkson

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 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."

How you can help

Last year, 173 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.

You can find out more about organ donation and confirm your decision through our website. You can also confirm your support for organ donation by calling 0300 123 23 23 or using the NHS app.