Sharing your organ donation decision made easier

Latest figures¹ show that 84% of people in England think it is important that they tell people their organ donation decision. But, only 4 in 10 people (39%) have told their close family or partner their decision. Of those who haven’t had the conversation, 34%¹ said it has never come up and 19%¹ stated they haven’t got around to it yet.

(Image: A portion of the Tell and Share tool as viewed on a mobile phone.)

NHS Blood and Transplant’s new Tell and Share tool will help explain the importance of sharing your organ donation decision with family and make it easier to do so. After registering their decision, people will be able to share a private message with family and friends by email, WhatsApp or, if they are accessing the site from a mobile phone, by text. In addition, those who register their support for organ donation will have the option to immediately download or print a digital organ donor card.

Those who have just registered a decision to donate will also have the ability to share stories, videos, and positive messages about organ donation such as real people stories, news stories and videos through social media² or by email if they so wish.

Within the first three weeks, around 7,500 organ donor cards have been downloaded and around 500 stories or videos about organ donation have been shared on social media or via messaging platforms by people who have just registered.

Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant, commented:

“The vast majority of people tell us that they understand the importance of talking about organ donation and sharing their decision, but the number of people who actually follow through on this is much lower. With this new Tell and Share tool we want to make it as easy as possible for people to share their organ donation decision with their family.

We know that if organ donation does become a possibility and families are faced with making a donation decision for a loved one, they find it easier when they have had the conversation and know what their relative wanted. Even after the law around organ donation changes next year, families will always be approached to discuss the option of organ donation, so telling your family your organ donation decision will help them support what you want at a difficult time.”

Hilaria's story

Kidney recipient Hilaria Asumu who became unwell at the age of 35 after suffering a miscarriage, multiple organ failure and then diagnosed with kidney disease says: “I was lucky a gracious donor family donated their loved one’s kidney to me. I waited for six long years before I had my transplant.

“I don’t know if the donor had had a conversation with their family.  Nevertheless, my long wait for a transplant brings it into sharp focus for me – people need to talk about organ donation, register their decision on the NHS Organ Donor Register and tell their families what they want to do.

“The Tell and Share Tool makes this so easy to do, everyone should use it when they register their donation decision.

Hilaria said: “I look back at the kind of person I was, and I look at what I became afterwards. I was a shadow of myself.”

Hilaria received a transplant after a six year wait: “When I got the call, it was like a miracle. I could not believe I’d got the kidney. I just wanted to burst into song, and sing!

“If more people just talk about organ donation and make sure they tell their family, partner or close friends it will make it so much easier for families to honour whatever decision they have made.”

More information

In 2020, the law around organ donation will be changing in both England and Scotland. From spring 2020 in England and Autumn 2020 in Scotland, everyone will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate, what’s known as ‘opt out’, or are in one of the excluded groups. This system was introduced in Wales in December 2015 and in Jersey in July this year.

Notes

1. Survey carried out by Kantar’s Public Division among a representative sample of 1802 respondents in England on behalf of NHS Blood and Transplant - June 2019
2. Social media channels included are Facebook and Twitter
3. The opt out system will be coming into effect in England from spring 2020. For information on the law change in England, visit our dedicated webpage. Further information on the changes in Scotland can be found on the Organ Donation Scotland website.