The NHS is urging people to speak to loved ones about their organ donation wishes, as figures show 12,000 patients have missed out on a life-saving transplant over the last decade. Data shows 4,900 died while on the waiting list and 7,700 became too sick for a transplant and were removed. The waiting list recently reached the highest level ever recorded, with 8,000 people in the queue.
However, there were 100 fewer deceased organ donors last year, resulting in a 2% drop in operations. Anthony Clarkson, a director 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.”
To mark Organ Donation Week, NHS Blood and Transplant (NHSBT) sent out a number of boxes used to transplant organs to journalists and influencers.
One delivered to the Express contained a heartbreaking letter from Jodie Cantle, 44, who has cystic fibrosis and has been waiting for a double lung transplant since May 2018.
She wrote: “It feels as though the world’s carrying on without me, every time the phone rings, I think: ‘Is this the call?’”
Jodie, of Devon, has received the call about a possible transplant 17 times but on every occasion something went wrong and the operation could not go ahead.
Her lungs have built up significant scar tissue and their function was below 10% when last checked.
Jodie added: “After seven years, I am very worried that my transplant won’t happen and I’m very aware I’m running out of time — and this terrifies me and my family.
“Please have the talk with your family and make your wishes known. Ultimately they get the final say, but by telling them you want to be a donor, you can help others after your death.”
England and Wales now have an opt-out system for organ donation where consent is presumed unless a person has registered a decision not to donate.
But families still have a say in the process. There were 520 cases last year where people had not registered their wishes and their families did not support donation.
In a further 173 cases, relatives overruled their loved ones’ registered or expressed wish to donate. NHSBT is therefore asking everyone to have a conversation with their family and make their wishes clear.
Mr Clarkson said: “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.
“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 two minutes to register but it could save the lives of people who so desperately need a transplant.”
You find out more and confirm your support for organ donation here.
‘A new heart for Rory would mean everything to us’
Baby Rory Fletcher urgently needs a heart transplant due to a condition that means her organ cannot pump blood properly.
The six-month-old is being kept alive in intensive care by a Berlin Heart, a mechanical pump that supports her heart’s left ventricle.
Her mum Becks, 31, said: “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.”
Rory, who was born with dilated cardiomyopathy, is being treated at Freeman Hospital in Newcastle. Becks is with her in ICU almost every day while dad Toby visits as much as he can after work.
Becks added: “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 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.”