A matter of life and death: the power of personal stories in driving change

England is set to follow in Wales’ footsteps by adopting an opt-out organ donation system. The Organ Donation (Deemed Consent) Bill, or “Max and Keira’s Law” as it has become known, passed through parliament on the 28 February 2019 and was granted royal assent shortly after, on the 15 March 2019. Named after a young organ donor and the boy who received her heart, the Bill will see a policy of presumed consent rolled out across England in 2020.

Changes to organ donation in England

Keira Ball was nine years old when she was involved in a fatal road collision. Her family took the courageous decision to donate her organs, and saved four lives in the process. Among them was Max Johnson, another nine year-old, who was on the organ transplant waiting list after a viral infection left him battling heart-failure.

It is reported that Max and Keira’s story inspired the UK parliament to change the rules around organ donation in England. Prime Minster Theresa May wrote a personal letter to Max after his operation which said: “When I read your inspirational story, I knew I had to act to change the organ donation rules to an opt-out system.”

Facts about organ donation in the UK

• More than 6,000 people are waiting for an organ transplant in the UK
• Three people die each day while on the waiting list
• Approximately 1,400 people per year donate their organs after they die
• Around 1,000 people donate a kidney or part of their liver while they are still alive each year

Source: NHS Blood and Transplant, Gov.UK

Opt out organ donation in Wales

Freshwater has a proud history of involvement in campaigns to increase organ donors. Our Tell a Loved One campaign for Donate Wales encouraged people to talk to their loved ones about their organ donation wishes – working to change the attitudes and behaviours which typically lead to a grieving loved one over-ruling the wishes of a deceased person to donate their organs. We are perhaps most proud however, of our award-winning Invisible Death Row campaign.

A UK-first for organ donation, the campaign featured real people on the organ donation waiting list, rather than actors. Invisible Death Row generated a sustained, high-profile debate, and ultimately saw Wales lead the way for the rest of the UK by adopting an opt-out system of organ donation in 2015. Four years later, and England is set to follow.

Influencing opinions about organ donation

In the case of both Invisible Death Row and “Max and Keira’s Law”, it was the hard-hitting and impossible-to-ignore reality facing people waiting for an organ transplant that lent these campaigns their edge. Both serve as a reminder of just how powerful human stories can be in shifting the dial, and affecting real change in an arena that – this time – is quite literally a matter of life and death.

You can learn more about our award-winning Invisible Death Row campaign here.