TODAY marks the first anniversary of the law around organ donation changing to an 'opt out' system in England.
To mark the milestone, two members of Bradford Teaching Hospitals' organ donation committee - who are trying to make a difference because their lives have been touched by transplantation and organ donation - have shared their experience.
Karen Piotr, who works at Bradford College as a special projects officer and who is the organ donation committee chairperson, and Kevin Ferdinand, a data improvement officer at St Luke’s Hospital, have become volunteer ambassadors for NHS Blood and Transplant (NHSBT).
The ambassadors’ programme aims to empower individuals to promote, educate and raise awareness of organ donation in their communities. Organ donation ambassadors serve in a voluntary role, going out to talk to the public at forums, events and on promotion stands.
Karen’s passion for campaigning for organ donation arose following the sudden death of her husband, Mark, 49, from a spontaneous and catastrophic brain bleed in 2017. Through his death, Mark went on to donate his organs and help eight people.
Karen knew what Mark’s wishes were as they had talked about it many times before his sudden passing and today she gets great fulfilment and satisfaction out of her work as a volunteer ambassador.
She said: “My husband Mark was my passion for over 30 years, so I wanted to talk about him and my experience of knowing his wishes so that others could be relieved of the burden of not knowing. I wanted to encourage people to talk and share their organ donation decision, so becoming an ambassador was the opportunity to be able to do that.
“I’m extremely humbled to meet wonderful people and see first-hand the joy in their eyes and smiles of what the second chance of life gives them and their family. That truly makes me happy knowing that my decision as Mark’s next-of-kin, has enabled them to enjoy life to the fullest. Some have gone onto be grandparents, get married and have children of their own.
“I’m often told or read about the amazing challenges recipients have gone on to do, such as competing in the British Transplant Games or doing sponsored challenges. I’m proud to be able to share and listen to these stories and marvel at the true determination and spirit these people have.
“I have seen first-hand the tenacity of how transplant recipients wear their scars with pride as they compete in sporting events at the British Transplant Games and also the World Transplant Games. I’ve witnessed many who want to lift their t-shirts to show you that scar and what ‘the’ phone call and subsequent operation meant to them.
“As an ambassador I get to attend events to educate and promote organ donation and talk to the public in my local community and beyond.”
Kevin was moved to become an organ donation ambassador after he had a life-saving heart transplant three years ago after a mystery virus attacked his organs, leaving him fighting for life.
He spent four months in intensive care (ICU) at Bradford Royal Infirmary (BRI) and Wythenshawe Hospital, in Manchester, at the start of 2018. At one stage he was placed on a mechanical heart for more than a month until a donor heart finally became available.
Kevin became an ambassador after he returned to ICU at BRI in the summer of 2018 to thank staff for their care. He was approached by the Trust’s former clinical lead for organ donation, consultant anaesthetist Andy Baker, to see if he would be interested in taking up the role.
Kevin said: “I was more than happy to become an ambassador as I wanted to be able to give something back to the NHS to say ‘thank you’ for saving my life.
“I really enjoy being able to spread awareness as I want to talk to people directly and encourage all families to talk about organ donation. No one wants to talk about when they die, but it is inevitable and it’s so hard on the families who are left behind to decide what to do. If I can help one more family to talk about organ donation, then that is good enough, that is one more family than yesterday.”
Kevin hopes that by sharing his story and through his work as an ambassador that he will encourage more families, particularly from Black, Asian and other ethnic backgrounds, to support and talk about organ donation.
The numbers of donors are increasing, but more need to come forward as often the best transplant match will come from a donor of the same ethnicity.
Kevin stated: “I’m three years post-transplant this April and I give thanks every day to the donor and celebrate life. I also am alive to see my five-year-old daughter, Lacie-Rose, grow up – what better gift could a father have.”
In February 2020, Karen and Kevin attended an awareness-raising event at Bradford College to highlight the importance of organ donation to students from ethnic minorities, alongside Leeds transplant surgeon, Shahid Farid, who had transplanted Mark’s liver into its new recipient.
Karen said: “The pandemic has meant that face-to-face awareness-raising events have now gone viral and now take place up and down the length and breadth of the UK.
“I find that it’s the powerful testimony of my story that resonates with people and often they ask me how I managed to carry on and do this role now – simple I say – Mark was one of life’s givers and now, through his selfless act, he has helped improve and save the lives of eight people … what could be more amazing than that.”
Every day across the UK, someone dies waiting for a transplant because of a shortage of organ donors.
Even though it is now an ‘opt out’ system, families will still be consulted before donation goes ahead.
People are therefore urged to register their decision and speak with their family so they know what to do if organ donation becomes a possibility.
The 'Leave them Certain' campaign was launched by NHSBT to encourage families to talk about organ donation.
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