To mark the first anniversary of Max and Keira’s Law (Organ Donation (Deemed Consent) Act 2020) law, a webinar was been organised by the NKF and the NBTA. The free event which took place on Thursday, May 20, 2021, where the progress made in organ donation since the inception of the change in law was discussed and how this has impacted patients from Black and Asian backgrounds.
The law saw the country shift to an ‘opt-out’ system for organ donation and means people in England are considered as willing to donate, unless they have opted out, are in one of the excluded groups or have told their family they don’t want to donate.
The webinar was chaired by Lord Jitesh Gadhia and Millie Banerjee CBE, Chair of NHSBT Board and will feature talks by Dr Dale Gardiner, National Clinical Lead for Organ Donation, NHSBT as well as a specialist nurse in organ donation, Sibonokuhle 'Bonnie' Ngwenya.
The panel discussion was chaired by Kirit Modi, honorary president of the NKF and NBTA, to consider how we can increase the impact of the change in the law.
Kirit Modi said: “The first year of implementing opt-out arrangements in England has been challenging but it is amazing that organ donation has continued throughout the pandemic. It is difficult to draw any conclusions from the data on opt-out from the first year. The webinar will highlight the challenges we face in increasing organ donation after the pandemic, particularly among BAME communities. The vast majority of the public support organ donation and effective partnership working between health professionals, charities and BAME community groups is crucial in achieving the ambitions agreed by Parliament.”
Lord Jitesh Gadhia said: “We owe a massive debt of gratitude to all NHS staff and particularly those who have helped organ donors and dialysis patients during the pandemic.”
Millie Banerjee, Chair of NHS Blood and Transplant, said: “The past year has brought many challenges to us all, but it has been incredibly heart-warming to see the public response to the change in the law around organ donation. Support has continued to stay strong, despite the country navigating its way through a pandemic and it’s brilliant to see that more people from Black, Asian and minority ethnic backgrounds are discussing their donation decision with their loved ones and ultimately enabling more donations to go ahead.”
19-year-old Simran Sahajpal is one recipient who has benefitted from organ donation since the law change came into effect. Simran was waiting for five years, by the time her life-saving call finally came in September 2020.
Simran said: “After being diagnosed with Chronic Kidney Disease and then end-stage kidney failure at the age of 14, I began to think that my transplant call would never come. Being from an Indian background, I was told early on that I could end up waiting longer for my transplant. From March 2018 I was reliant on daily dialysis, which lasted for 10 hours every night.
“When I finally got my call last September, I honestly couldn’t believe it. While recovery took some time, it was just wonderful to finally be free of daily dialysis and I have even been well enough to start university. I am just so grateful to the donor and their family who said yes and made all this possible.”
Data points:
Between May 1, 2020 – April 30, 2021, 296 people in England donated their organs These donors make up 29% of all 1,021 donations during that period.
29 people (36%) of BAME members were considered as willing to donate as they had not expressed an organ donation decision in their lifetime.
31 people (39%) of Black, Asian, Mixed race and Minority ethnic donors had positively expressed their decision to donate, either by registering their decision on the NHS Organ Donor Register or through conversation with their family.
