The NHS is making a heartfelt appeal to people to register their organ donation decision
People are encouraged to record or share their organ donation decision and let their loved ones know what they want to happen to them when they die, so that no opportunity to save a life is lost.
The latest annual figures released today by the NHS Blood and Transplant (NHSBT) show that last year (2021/22), despite transplants up 30% on the number achieved in the first year of the pandemic (1), there are still thousands more waiting for a transplant.
The annual report on organ donation and transplantation activities shows that there are currently 6,393 people on the active waiting list for a transplant, with another 3,990 temporarily suspended. (2) This despite the fact that 4,324 patients managed to get the organ transplant they desperately needed.
Unfortunately, 429 patients died while waiting for their transplant compared to 525 the previous year, a decrease of 18%. Another 644 were removed from the transplant list. Many of these patients are said to have died soon after.
Myles Tolley, 32, from Walsall in the West Midlands, considers himself one of the lucky ones. Myles, who suffered complications from a blood clot when he was just 22, has incredibly received three liver transplants since 2019.
Unfortunately, after a successful first transplant in November 2019, Myles contracted COVID-19 followed by sepsis which put him back in intensive care.
This ultimately led to him being in dire need of a second transplant in June 2021, only for another bout of sepsis which led him to require a third transplant in November.
He said: “The past ten years have been really difficult, and I lost my 20s due to complications from the blood clot, although no cause for the blood clot was ever identified.
“I received incredible support from my surgeon, hospital staff, family, friends and partner, but it has been a difficult journey. I have never met or heard of anyone getting sick like this and never expected to need three transplants.
“Many of my family and friends now understand how important organ donation is and they have all joined the registry.
“Now my health is improving and I feel my best for a long time, my blood tests are all very good and I am getting stronger every day.
“I feel like I’m living my life, not just for myself but also for my three donors – they’ve all given me the greatest gift and I want to honor them and live the best life possible.
“They motivate me on difficult days and help me through. I have written letters to their families and will send them when I feel the time is right.
Declining consent rates
The number of families willing to donate when approached fell for the first time in nearly a decade. 66% of families supported the donation in 2021/22, compared to 69% in 2020/21.
It’s not immediately clear why consent rates have dropped, but it’s important to note that the challenges of the pandemic continue to impact both hospitals and families, many loved ones over the past year still unable to be hospitalized with their loved ones.
100 families said they refused to support the donation due to the length of the process, which may in part reflect the challenges of COVID-19.
A total of 605 families refused to support organ donation, for reasons other than knowing that their loved one did not wish to be a donor. Reasons given included not knowing what their loved one wanted, the family not believing in donation or being split on what their loved one would have wanted.
With each donor donating an average of three organs, it is estimated that this could represent up to 1,815 missed transplant opportunities.
Families were much more likely to support donation when they already knew it was what their parent wanted. Over 92% of families honored their family member when the donor had either proactively registered their decision to donate on the NHS Organ Donor Register or spoken with their family.
In 92 of the 605 family refusals, the patient had recorded or expressed their decision to be a donor, which the family then canceled. (3)
Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “Organ donation and transplantation is a fundamental part of the NHS’s work to save lives. This is shown by the increase in the number of patients who receive a transplant this year and the number of those who continuously register their decision to be an organ donor.
“Unfortunately, hundreds of people still die unnecessarily every year while waiting for a transplant. We know that if everyone who supported the donation spoke up and agreed to donate, most of those lives would be saved.
“We need families to support their loved one’s decision and agree to donate when approached if they know that’s what they wanted. Last year, 3% fewer families agreed to do so when asked than the year before, which may be due to a range of factors including the challenges of the pandemic.
“Whatever the reason, we need to encourage people to record their decision and discuss it with their family, because organ donation really does save lives.”
There are currently over 30 million people in the UK who have registered their organ donation decision on the NHS Organ Donor Register, with over 27 million of them explicitly agreeing to be a donor of organs when they die, but this still only represents around 44% of the UK population.
Even though organ donation law has now become a ‘opt-out’ system in England, Scotland and Wales, family members will still be consulted before organ donation. This means it’s still just as important to register your decision in the NHS Organ Donor Register and make sure your friends and family know what you want.
Fight against health inequalities
A number of community projects across England have received a share of £440,000 in funding as part of the government’s commitment to tackle health inequalities in black and Asian communities and address the need urgent need for more vital organ donors from these backgrounds.
Health and Social Care Secretary Steve Barclay said: ‘It is vital that as many people as possible consider becoming an organ, blood or stem cell donor and this funding will make a real difference. , giving more people the opportunity to donate life.
“We particularly need people from Black, Asian and other ethnic minorities to come forward as they often have to wait much longer for a successful match due to a shortage of suitable donors – with a 50% drop in living donors of these origins over the past five years.
“Talking openly about organ donation with loved ones is important, and I’m proud that this program is using trusted voices and community organizations to start more conversations, helping us save more lives.”
You can register your organ donation decision online, by calling 0300 123 23 23 or via the NHS app.
- Myles Tolley in the hospital
- Myles after transplant