Max and Keira’s Law on organ donation comes into effect in England

Under the new law, all adults in England are considered as having agreed to donate their own organs when they die unless they record a decision not to donate (known as ‘opting 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; people who have lived in England for less than 12 months; those who are not living here voluntarily and those who have nominated someone else to make the decision on their behalf.

In cases, where the individual hasn’t expressed a decision, specialist nurses will support families to make a decision, based on what their loved ones would have wanted. If the decision is not to donate, this will be honoured and upheld.

The law is named after Max Johnson, a 12-year-old heart recipient, who championed this law change, and his young donor, Keira Ball.

Anthony Clarkson, director of organ and tissue donation and transplantation at NHS Blood and Transport, said: “We are very pleased that Max and Keira’s Law has passed its final round of parliamentary approval and we welcome the new legislation.

“It is important that people know they will still have a choice whether or not to donate. Families will still be consulted, and people’s faith, beliefs and culture will continue to be respected.

“We hope this law change will prompt all of us to consider whether or not we would want to donate our organs and encourage us all to register and share our decision with our family and friends. We want people to know that there is no deadline to making your donation decision, you can register your choice at any time.

“We will continue to provide the very best care and support to organ donors and their families, in order to help save more lives through the gift of organ donation.”

Very few people die in the circumstances where organ donation is possible and currently, even fewer donations and transplants are taking place. While transplants continue to happen, organ donation will not go ahead, if a potential donor in known to have, or is suspected of having, Covid-19. The service continues to work closely with transplant centres which are considering re-opening their programmes in a phased return to normal as part of the wider recovery of NHS services.

Faizan, 33, from Blackburn, had his first organ transplant at the age of three. When that failed at the age of 14, he was on dialysis for 18 months and in 2000, he received a kidney from his father. He is now back on the organ transplant list and has been waiting for a kidney for the last two-and-a-half years.

He said: “This will be my third transplant and will be the most complicated yet as it will need to be a near perfect match – which means it needs to come from my own community. This means it is incredibly likely I will be waiting for a while as the Asian community are under-represented as donors on the NHS Organ Donor Register.

“Perhaps this is because they have never considered it, feel it is a taboo subject, that their religion doesn’t allow it or family would disapprove. I would urge everyone to do more research, read the information provided by the NHS, find out what different religions really say about organ donation and how different faiths and beliefs can be respected and accommodated by organ donation staff.

“For many people like me, who are waiting for an organ, the law change is a sign of hope and a transplant would dramatically change my life in a number of ways. With the new law coming into effect, it is now more important than ever to talk about organ donation and get the conversation going amongst our family and friends.”

Kirit Modi, Honorary President of National BAME Transplant Alliance (NBTA), said: “I welcome the change in law because eventually it will result in a significant increase in organ transplants and help save lives. I urge people from across Black, Asian, Mixed Race and Minority Ethnic communities to continue to support organ donation and register to donate organs following discussion with their family members. If you haven’t considered organ donation before, then please take time to find out more about it before making your decision.

"At a time when COVID-19 has had a huge impact on many from the BAME communities, it is important that we continue to work closely with NHS Blood and Transplant (NHSBT) and NHS hospitals to carefully consider and work to address any disproportionate impact on BAME patients.”

For more information, and to register your decision, visit: www.organdonation.nhs.uk