- Only 37% of over 16s in England currently aware that the law is changing
- 8 out of 10 people in England say they would definitely donate or would consider donating their organs, but only a third have told their family they want to donate
- Every day, across the UK, three people who could have benefited from a transplant die because there aren’t enough donors, while 6,000 are still waiting
NHS Blood and Transplant today, Thursday 25 April 2019, launches the year-long national campaign, ‘Pass it on’, to increase awareness and understanding of the new organ donation law – Max and Keira’s Law – which comes into place next year, across England.
From spring 2020, all adults in England will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate or are in one of the excluded groups.
Those excluded will be people under 18, people who lack the capacity to understand the change and people who have lived in England for less than 12 months before their death or who are not living here voluntarily.
The campaign, ‘Pass it on’, aims to highlight organ donation and the law change on several different levels:
- Organ donation is a precious gift: you can save and transform up to nine lives by passing on your organs
- Make and share your decision: It’s your choice whether or not you want to donate. Make your decision and pass it on to those closest to you
- Spread the word: Help pass on the message about the change in the law around organ donation in England, and what it means, to others
Vanessa Hebditch, Director of Communications and Policy at the British Liver Trust said, “The UK is currently facing a liver disease crisis – it is now the third leading cause of death in people of working age. Every year people die whilst waiting for a liver to become available. At the moment, we just don’t have enough donors to meet demand and we hope that this law will make more organs available. By donating organs you really are giving the gift of life. Although the law is changing please make sure your wishes are known to those closest to you.”
A survey* carried out by NHS Blood and Transplant in January 2019, found only 37% of people over 16 were aware that the law around organ donation was changing. While this rose to half of over 55s, amongst certain groups awareness is much lower – for example, only 21% of 16 - 20 year olds and 27% of people from BAME backgrounds.
The campaign, developed with input from people from a range of ages and backgrounds and from across the country, aims to clearly communicate that the law is changing and the choices available, as well as encouraging people to make a decision and share this with their family.
Anthony Clarkson, Director of Organ Donation and Transplantation for NHS Blood and Transplant, says: “Organ donation is, and always will be, a precious gift. Although the law is changing it will still be the generosity of individual donors and their families who decide at the most difficult time to support organ donation, which will ensure more transplants can happen and more lives can be saved.
“We want everyone to know the law around organ donation is changing, to understand how it is changing and the choices available to them. We want them to make their organ donation decision and to share that decision with their family.
“While eight in ten people in England tell us they definitely want to donate or would consider donating, only just over a third of adults have told their partner or family that they want to donate their organs after they die. Regardless of the organ donation decision you make, the most important thing is to make sure your family are aware of your decision.
“We hope that by increasing awareness and understanding of organ donation, we can inspire more individuals and families to agree to donation and allow many more lives to be saved.”
Once the new system is introduced across England, families will still be involved before any organ or tissue donation goes ahead and NHS Blood and Transplant Specialist Nurses will continue to speak with families about their loved one’s decision.
Through his death, Mark Piotr helped eight people, donating his heart, liver, kidneys, lungs, pancreas, corneas and tissue, after suffering a catastrophic brain bleed in May 2017. Mark, a huge sports fan from Bradford, met his wife Karen as teenagers and they married in 1993. Both were blood donors and signed up to the NHS Organ Donor Register, and Karen knew he wanted to donate.
Karen says: “When Mark was taken into hospital, I was told the next 24 hours were vital. 24 hours can seem like an eternity when you are waiting for a ray of light, a miracle or that happy bit of news about your husband. Up to this point he was healthy, happy and full of life, he’d almost never had a sick day in the 31 years we’d been together.
“Sadly, despite surgery and the team’s best efforts, Mark didn’t regain consciousness. The doctor approached me and everything around me stopped. He told me there was nothing more they could do. Adrenaline surged through me and I immediately said, ‘We’re organ donors, what about his organs – can they be used?’ I knew it’s what Mark would have wanted, he was such a selfless person, he would always try to help people.
“A specialist nurse for organ donation came to speak with me. He was patient, kind and a bit nervous of the questions he had to ask. I didn’t feel rushed or pressured. I asked questions.
“Through his selfless act Mark saved and improved the lives of eight people – how amazing and special. I thought of the recipients who would be getting the news that an organ had been found, this brought me joy and hope in my darkest hours.
“It made such a difference that I knew he wanted to be an organ donor. Even though the law is changing, please don’t leave your family to guess what you wanted. It is so important to have that conversation and let them know your wishes.”
The ‘Pass it on’ campaign is being supported by charities and community groups, including British Heart Foundation, Kidney Care UK, Donor Family Network, Share Your Wishes, ACLT and National BAME Transplant Alliance.
Jackie Doyle-Price, Minister for Inequalities said: "Far too many people in need of an organ transplant are still dying on a waiting list. We hope that Max and Keira's Law will save hundreds of lives when it comes into effect next year - but until then, it’s vital people understand what the new law means for them.
“I want to reassure everyone that choosing to give the gift of life still is and always will remain a personal decision. I strongly urge people to talk to their loved ones about their wishes and make their decision clear on the register."
Digital adverts will run across relevant social media channels with online resources and a toolkit available for individual supporters, community groups and partner organisations. Videos, animations, factsheets and FAQs plus printed materials will also be available.
To find out more about organ donation, the law change, or to opt in or out, visit: www.organdonation.nhs.uk or call the dedicated advice line on 0300 303 2094. You can find answers to commonly asked questions here https://www.organdonation.nhs.uk/opt-out-faq/