As of 20 May, the law around organ donation has changed. In the past, the UK operated under an ‘opt-in‘ scheme. This meant an individual was only considered an organ donor if they signed up to become one while they were alive. The new ‘opt-out’ system is now in place, meaning all adults are considered organ donors unless they record their decision not to. Those who would like to opt-out can do so via the NHS Organ Donation Register.
This law has been changed to help save more lives. Every day in the UK someone dies waiting for an organ transplant, but numbers taken from the NHS state that one donor can save up to seven lives. [1] You may also hear this law referred to as ‘Max and Keira’s Law’.
Max and Keira’s stories
Keira Ball was nine years old when she was tragically involved in a car accident from which she couldn’t be saved. Keira’s father Joe was then approached by the organ donor consent team, and he agreed for Keira’s organs to be used to help others. Keira’s donation saved the lives of four other people.
Among the four was Max Johnson, also age nine at the time, who received her heart. Before the transplant, Max was suffering from dilated cardiomyopathy, a crippling disease which effects the heart muscle. Kept alive using a mechanical pump, Max and his family were told to prepare for the worst. However, following a life-changing donation from Keira and a successful operation, Max pulled through. He’s now twelve and his heart is working well. Under this new law, those who are eligible will be considered as organ donors upon death unless they opted out while alive. Figures taken from the NHS cite over 6,000 people waiting for a transplant in the UK. However, many of those on that list will die while waiting for a suitable organ. [2]
Importance of discussions with those close to you
The decision to become an organ donor is yours alone, and while alive morally and legally no one can make this decision for you. However, it is still vital to keep your family informed of your decision. Even under the new ‘presumed consent’ law, it will still be possible for the family to prevent a donation. This is why it is so important to discuss your wishes with your relatives. If you’ve registered to become an organ donor but haven’t yet told those close to you, please take the time as soon as possible to have this important conversation. The below video demonstrates how if we all thought more like children, we’d save more lives.
How to talk about organ donation with children
Perhaps still viewed as a ‘taboo’ topic, organ donation is something seldom openly discussed with children. Members of the public however think this needs to change. Among those who advocate the education of children are the younger generation themselves. Max Johnson, mentioned above, had this to say on educating his peers on organ donation:
“I want everyone to talk to each other – if a member of your family died, would you let their organs go to waste and decay or save a few people’s lives?” [3]
Max Johnson, aged twelve
Orgamites
Helping towards this goal are the non-profit organisation, ‘The Orgamites’, whose sole aim is to raise acceptance and public awareness of organ donation. Depicted as cartoon adaptations of various human organs, such as the heart below, The Orgamite characters are aimed at helping children understand organ donation in an engaging and friendly way. The organisation also specialise in providing resources and aid to parents and schools trying to educate their children on this topic. Among these resources include a useful downloadable guide on how to discuss organ donation with children.
A study undertaken by the NHS sheds light on the vast number of people within the UK who desperately need an organ donation, with almost 49,000 in the last 10 years waiting for a transplant, with over 6,000 dying before they receive it. However, the number of parents with children under the age of 18 who have discussed the topic of organ donation with them is an astounding 15%. [4] How can you know the wishes of those closest to you, if these important conversations aren’t had?
Those under the age of 16 in the UK need parental consent, which is why starting these conversations early is so important. Doing so can help reduce the stigma around such conversations and ensure no one is left in the dark about what those closest to them want.
If you want to know more about organ donation and the change in the law please visit these websites:
References
[1] NHS Blood Transplant, ‘Organ donation law in England is changing’, 2020 (https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-england/).
[2] NHS Blood Transplant, ‘Statistics about organ donation’, 2020 (https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/statistics-about-organ-donation/).
[3] BBC, ‘Organ donor law change named after Max and Keira’, 2019 (https://www.bbc.co.uk/news/health-47359682).
[4] Live Life Give Life, ‘The Orgamites: An Intervention to Save Lives’, 2020 (http://orgamites.com/wp-content/themes/orgamites/pdfs/Orgamites_Infographics.pdf).
