Powerful stories about lives saved by organ donors have been heard as a campaign to encourage people to join the NHS donation register was launched at Bradford College.
With the law on organ donation changing this spring, the college’s awareness-raising initiative for students aims to break down myths around organ donation and increase support for the process.
The college is working with NHS Blood and Transplant to educate communities through the BAME Community Investment Scheme, part of a Government-funded campaign to address the critical shortage of organ donors from those ethnic backgrounds.
Nosheen Qamer, Student Services Team Leader, said: “We are proud to work with NHS Blood and Transplant on this campaign. It is really important to us as a college to share their message within our communities and encourage conversations between students and their loved ones on this important subject.”
Introducing a special launch event at the college at the beginning of the month, Special Projects Officer Karen Piotr told the students how her husband Mark was able to save eight lives following his sudden death in May 2017. She described how, from her despair at being told by doctors that nothing could be done to save Mark, the thought that her husband could give the second chance of life to people in desperate need of new organs gave her hope.
When doctors told Karen that Mark was ideal to be an organ donor, Karen said: “I forgot about myself. I said: ‘Do whatever you need to do.’”
Among the people whose lives were saved thanks to Mark and Karen was Sheffield-based artists Pete McKee, who received Mark’s liver. He told Karen in a letter: “I can never thank you enough.”
Another of the event’s special guest speakers was the surgeon who carried out the liver transplant for Pete, Mr Shahid Farid, a Consultant Transplant Surgeon at St James Hospital in Leeds. He said: “With the change in law coming into effect on 20th May, there is a need for open and frank discussions about the myths and barriers that exist to organ donation and allow for everyone to be empowered to make an informed decision about their choice to donate. Organ donors make a real difference and save lives.
“While there is a need for organ donors of all ethnicities, there is a shortage of organ donors from black, Asian, mixed race and minority ethnic backgrounds. For example, according to NHS Blood and Transplant, the shortage of donors from South Asian community means that members of this community will on average wait longer for a kidney transplant than other ethnic groups patient due to the difficulty in achieving optimal matching of organs.”
Mr Farid discussed some of the concerns raised around organ donation from all communities, and reassured the audience that the opt-out proposal would never supercede the wishes of the family, the operation meticulously performed with skill and dignity, the visible appearance of operation minimised and the need of timely burial customs - for example in Islamic traditions - respected. Others raised ethical challenges such as the right of certain groups of people with specific diseases such as alcoholic liver disease, directing altruistic donation to certain people or groups and the use of organs from people with infections and other diseases. Mr Farid explained: “Organ donation remains an open facility based on need and benefit, irrespective of sex, race, religion, sexuality or social and economic background. Those donating altruistically do so willingly and openly and placing trust in the medical profession to direct the gift of life to those most in need.”
Former transplant patient and organ donation campaigner Kevin Ferdinand delivered an emotional speech about his journey to health after receiving a new heart in April 2018. Aged 38, Kevin suffered multiple organ failure. He said: “It’s a miracle I’m still here.”
Being of Afro-Caribbean ethnicity, Kevin said he had to wait a little longer for his new heart. He said: “I had to be strong for my four-year-old daughter.
“I’ve battled through.”
Having been on a life support machine for a month and a half, Kevin was given the momentous news that he would survive and there was a heart waiting for him. In an emotional and touching gesture one of the students present approached Kevin to offer him support when he became overcome at telling his story.
Finally, Tina and Aky Suryavansi described how they each gave a kidney to their son Akash, who was born with dysplastic kidneys and spent the first week of his life in intensive care. Tina said: “He defied the odds. We thought we would be taking him home to die. He kept going.”
Akash started dialysis at six months old and went on a transplant waiting list once he had reached 18kg in weight. However, he remained on the waiting list for a further five years until, just before his sixth birthday, Akash became very ill. Aky said: “We became really desperate. We asked to have ourselves tested to see if we could be his donors.”
Tina turned out to be a blood group match for Akash and became his first donor in January 2004. She said: “It changed his life. He started living life as he should have been living it, he started going to school.”
In early 2015, the kidney began to fail and he went back onto dialysis. While he was waiting for a transplant, he suffered a double brain haemorrhage in October 2015. Tina said: “We thought he wouldn’t survive the year.”
But in November that year, another chance at life was given when he received another kidney from his father. Now 21, Akash is now studying childcare in Leeds. Aky said: “He’s doing OK.
“Organ donation is giving somebody the gift of life.”
Currently, more than 6,000 people in the UK are waiting for an organ.
The government has announced that the Organ Donation (Deemed Consent) Act will come into effect on 20 May 2020. Also known as Max and Keira’s Law, the change means all adults in England will be considered as having agreed to donate their own organs when they die unless they are recorded as having opted out, or are in one of the excluded groups.
Those excluded will be people under 18, those who lack the mental capacity to understand the new arrangements and take the necessary action; and people who have lived in England for less than 12 months or who are not living here voluntarily.
After the law changes, families will continue to 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. More information can be found on the NHS Blood and Transplant website. NHS Blood and Transplant has also produced a wealth of information helping people to get the facts and tackle misconceptions around organ donation.