National Kidney Federation & NBTA organise free webinar to mark first anniversary of Max and Keira’s Law

THE National Kidney Federation (NKF) and NBTA have organised a webinar to mark the first anniversary of Max and Keira’s Law in England.

Leading charities call on Black and Asian communities to continue to talk about organ donation and register their decision, one year on from Max and Keira’s Law (Organ Donation (Deemed Consent) Act 2020) coming into effect in England.

The free event which takes place on Thursday (20) will discuss how organ donation has progressed since the law change and how this has impacted patients from Black and Asian backgrounds.

The webinar will be 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 specialist nurse in organ donation, Sibonokuhle ‘Bonnie’ Ngwenya.

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.

Latest figures, published by NHS Blood and Transplant show that between 1st May 2020 – 30th April 2021, 296 people in England donated their organs after being considered as willing to donate as they had not expressed an organ donation decision during their lifetime. These donors make up 29% of all 1,021 donations during that period.

When we look at Black, Asian, Mixed race and Minority ethnic donors who donated their organs over the same period of time, 29 people (36%) were considered as willing to donate as they had not expressed an organ donation decision in their lifetime. A further 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.

Lord Jitesh Gadhia said: “We are approaching the first anniversary of the change in law on organ donation, and like all other areas of life, Covid-19 has had a major effect. 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.

“The upcoming webinar will offer a timely opportunity to hear first-hand accounts of frontline experiences and take stock of how the law change has made an early impact.  In addition, it will provide a chance to discuss future strategy and ways to enhance collaboration between BAME communities and key stakeholders, especially NBTA, NKF and NHS Blood & Transplant.”

Millie Banerjee, Chair of NHS Blood and Transplant, says: “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 law around organ donation. Support has continued to stay strong, despite the country navigating its way throughout 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.”

A panel discussion will be chaired by Kirit Modi, honorary president of the NKF and NBTA, to consider how we can increase the impact of the change in 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.”

Orin Lewis, co-chair of NBTA, said: “On behalf of the National BAME Transplant Alliance, I would like to convey our congratulations to the National Kidney Federation for hosting this timely webinar on the anniversary of the law change in England. We support this great opportunity to discuss and debate the reflective, present and forward-thinking views of all interested parties relating to organ donation. And despite the all-embracing effects of Covid-19 over the last year, we are still delighted that there have still been a small relatively significant number of BAME families who consented to donating the organs of their loved ones in order to save other lives.”

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 says: “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.

“Prior to the law changing, there were so many myths and misinformation circulating, I felt I needed to speak out and do something to ensure people had access to the real facts. It has been really encouraging to see people starting to listen and more people being willing to talk openly and support organ donation.

“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.”

A copy of the recording of the webinar will be available at the NKF website: www.kidney.org.uk/nkf-nbta-webinar.