This year Organ Donation Week runs from 20 to 26 September, and there are various activities taking place across the UK. One of these is the readthrough of our very own William Johnston’s play The Starman, The Superhero and The Wizards. The script is based on William’s own experience of dialysis, transplant and organ donation and examines the physical and psychological challenges confronted by patients on dialysis, waiting for a transplant, and the impact these have on overall quality of life and family relationships.
Anna Wilson from Queens University Belfast told us, “William’s play was originally written to educate people about living life on dialysis and to promote organ donation. It investigates the daily restrictions and mental health challenges experienced by renal patients waiting for a transplant and how receiving a transplant can re-define new challenges. Through the play, William has examined how physical and mental scars have impacted his life, both before and after receiving a transplant, and how these could be managed. The writing of the play during lockdown helped his mental health and gave him a purpose and a sense of pride. William’s work demonstrates the potential of art as a valuable resource for managing individual wellbeing and mental health.”
Fiona Loud, our Policy director will also be attending a Donor Family Network event at the National Arboretum on Sunday 26 September.
All secondary school children in England are now being taught how to save lives through donation. Teaching about blood, organ and stem cell donation is now part of the national curriculum for the first time. We are also supporting the work of NHS Blood and Transplant, encouraging more people to talk with their families and share their organ donation decision. NHSBT are also working with the ‘Harmonies of Hope’ children’s choir who are calling for children not to be ‘Invisible’, with a song which reveals the hidden impact for more than 7000 people, including 200 children, currently predicted to be in need of a transplant across the UK. The song, ‘Invisible’, chosen by the choir and written by American songwriter Jason Robert Brown, includes the lyrics: “Here I go – look at me! There’s a lot I can be, but I won’t be invisible…Take down the barricades, I’m coming through! Here I go – now you know! Just ‘cause you can’t see me, It don’t make me invisible.” It captures the feeling of those waiting for their donor match, especially in the midst of a pandemic, who explain how this can leave them isolated; unable to participate in day-to-day life, missing out on school, special occasions and even the ability to see close family and friends.
Oliver, was born with one kidney and his parents were told when he was just three days old that he would need a transplant by the time he was one. However, Oliver didn’t actually receive his transplant until he was seven years old. Amazingly, his mum donated a kidney to him and ever since he has been getting stronger day by day. Oliver says: “I wouldn’t be here if it wasn’t for my transplant and most importantly I have seven years of eating to catch up on. For all those people out there who are waiting for a transplant, I would say don’t lose hope. You’re not invisible and there is always going to be someone in the world who is going to do everything they can in order to save you.”
Last year (2020-21) 15 children and 494 adults sadly died while waiting for a transplant, yet only 1% of people die in circumstances where organ donation is possible, making each and every donor precious. However, for over a decade, the number of young organ donors has remained at around 50 each year, with just over half of families approached (54% in 2020-21), agreeing to organ donation. At the same time, children on the waiting list for an urgent heart transplant face on average waiting two and a half times longer than adults. Even though the law around organ donation has changed to an opt out system for adults in England, Scotland and Wales, it is important that people are aware that families will still always be consulted before organ donation goes ahead. For this reason, it is just as important as ever to make your organ donation decision known to your family and friends and leave them certain of what you what to happen in the event of your death.
Health and Social Care Secretary Sajid Javid said: “Waiting for an organ match can be a challenging and isolating experience, and I want to applaud Harmonies of Hope for their bravery in sharing such powerful accounts of lifesaving transplants. It’s vital we do all we can to ensure no child feels invisible as they wait for a match, particularly those families in underrepresented, ethnic minority communities where donation rates are not high. This can change and I am urging families up and down the country to have honest and frank conversations this week about organ donation. It’s a decision that could save someone’s life.”
For more information, or to register your organ donation decision, please visit the Organ Donation website, or call 0300 123 23 23. NHS app users can also use the service to record, check or update their organ donation decision.
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