Campaign aims to improve organ donation consent rates in Wales

A new campaign has been launched to reverse a worrying increase in the number of families in Wales withholding their support for organ donation after the loss of a loved one.

From a situation where the family consent rate for organ donation was 10% higher in Wales than the UK average just five years ago, it is now 5% lower, meaning vital opportunities for transplants are missed each year because families aren’t sure whether or not to donate their loved ones’ organs.

In 2015, Wales was proud to be the first UK nation to bring in a system called ‘presumed consent’. This means, unless they have ‘opted out’ on the NHS Organ Donor Register (ODR), people in Wales will be considered to agree to becoming a donor when they die.

However, many specialist nurses working with families of potential donors believe that since the introduction of presumed consent, fewer people are having conversations because they assume they are automatically going to be a donor if the situation arises.

Families are always consulted in the donation process, so it’s vital they know what their loved one wants to do when they die.

“Best thing you’ll do today”

Bethan Moss, a specialist organ donation nurse working in Wales said: “The Best thing you’ll do today campaign aims to increase registrations on the NHS Organ Donor Register and encourage people to discuss their decision with loved ones’

“This ensures their family can have peace of mind knowing that their decision is being honoured and will reverse the trend of more families in Wales withholding consent at what is already a difficult and emotional time.”

The creation of the NHS Organ Donor Register in 1994 has been a positive move, with more than 100,000 people in the UK having their lives saved by an organ transplant, including over 10,000 in Wales. Now in its 30th year, the register has seen over 1.3 million people in Wales declare their willingness to donate their organs after they die.

However, family members remain a key part of the final decision-making process and research indicates that, while many are aware of the opt-out system in Wales, they often do not fully understand what it means in practice.

Support falling

Family support for deceased organ donation has fallen in Wales from 77% in 2018/19, a couple of years after the new law was brought in, to an all-time low of 56% in 2023/24. This compares to 60%, 61% and 66% in England, Scotland and Northern Ireland respectively.

“Family support is declining right across the UK but the fall we have seen in Wales has certainly been the most dramatic,” adds Joanna Chalker, who has worked as a nurse for NHS Blood and Transplant in Wales for more than 16 years. “Encouraging people to sign the register and speak to their families about their decision is such an important thing as we know family consent rates rise to 90% when either of these things happen, which means many more people on the waiting list being able to receive a transplant.”

In 2005, 21-year-old Jenna Williams from Bargoed was struck by a life-threatening heart condition and rapidly deteriorated. After collapsing while walking home, she was rushed to hospital, where doctors discovered her heart was functioning at only 5-8% capacity, despite having no prior symptoms.

Diagnosed with a hereditary heart condition, she was placed on the waiting list just before Christmas and by January 2006 she received a heart transplant. She recovered quickly but 17 years later, in 2023, Jenna suffered another heart failure and required a second transplant.

This time, she spent 15 months in hospital, away from family and friends, while on the waiting list. Now a mother of two and a wife, Jenna is an advocate for organ donation, particularly in Wales.

Jenna said: “In Wales, we don’t have a hospital to perform heart transplants, so we are sent to hospitals in England. There are many people in Wales who’ve had transplants but aren’t talking about it, so I feel it’s important that I share my story.

“I didn’t know enough about organ donation; it didn’t sit well with me. After we found out I needed a transplant, they had to screen my family. It’s hereditary, my father had a transplant but passed away, and my daughter has the same condition and might need a transplant in the future. Someone so selfless who has given their permission to be an organ donor can help so many people.”

Right now, almost 8,000 people, including over 200 children, are waiting for a life-saving transplant across the UK and yet a single deceased organ donor could potentially save or improve up to nine lives.