Date announced for Max and Keira’s Law to come into effect

The Government has announced that, subject to parliamentary approval, Max and Keira’s Law – the Organ Donation (Deemed Consent) Act – will come into effect on the 20 May 2020.

From the time the law changes, all adults in England will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate, what’s known as ‘opt 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.

Even after the law changes, families will still 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.

Anthony Clarkson, Director of Organ Donation and Transplantation for NHS Blood and Transplant, says:

“We hope that the new law encourages more people to record their donation decision and talk about organ donation with their families. It is important for people to know that they can do this at any time before or after the law comes into effect, there is no deadline for making your donation decision.

“We are encouraged that almost two thirds of people in England are now aware that the law is changing, but we would like this figure to be even higher by the time the law changes.

“The majority of people tell us that they support organ donation in principle, yet only around 4 in 10 have actually registered their decision.

“For those who have not thought about organ donation before, or who still have questions, we have lots of information available on our website and our team of helpline advisors are available to answer any queries.

“Organ donation is and always will be a precious gift and if more people are inspired to support and agree to donation, then many more lives can be saved.”

The latest NHS Blood and Transplant awareness survey, carried out in January 2020, showed that 62%¹ of the population aged 16 years or over in England are aware that the law around organ donation will be changing. This has risen from the baseline of 46%² recorded prior to the launch of the law change awareness campaign, ‘Pass it on’, which officially launched in April 2019.

Health Secretary, Matt Hancock, said:

"Too many people lose their lives waiting for an organ, and I've been determined to do what I can to boost organ donation rates.

"So I'm incredibly proud of the action we are taking with this new law. This is an important step forward in making organ donation easier and more available to those who need it and could help save hundreds of lives every year.

"I pay tribute to the brave campaigning of families such as Max and Keira's, whose tireless work on this issue has made a huge difference."

Max Johnson, the 12-year-old heart recipient, who championed this law change, and in return saw the law named after him and his young donor, Keira Ball, said:

“I am very excited that we now know when the law change in England will actually happen. There are so many people who are waiting, just like I was, for the call to say that a suitable heart, kidney, lungs or liver has been found. I just hope that this law change can help save more lives. When you are waiting for a transplant, every day counts and I hope that everyone who hears about the law change will be reminded to speak to their family, so they know what you want.

“I am proud that when people speak about Max and Keira’s Law, they will be reminded to think of Keira, and I hope by remembering her in this way, that she will go on to help save even more lives than she already has.”

It has also been stated that only organs and tissue used for routine transplants, will be included under the new system.

Laura Beattie is one of 6,000 people across the UK still waiting for a transplant. Laura, 31, from Stretford, Manchester, has cystic fibrosis. She has been waiting for a lung transplant since August 2018.

“There are always mixed emotions, especially depending on how you feel on each day. It is always in the back of my mind and sometimes it does come to the forefront. I always have to have my phone on me and have it on loud as I don’t know when the call is coming.

“A transplant would make an absolutely massive difference in all aspects of my life from being able to simple things without being breathless doing the smallest tasks, to being able to go out and about without feeling unwell and exhausted.

“I really hope the law change encourages more people to support and even just consider organ donation because a transplant is my only option now.”

NHS Blood and Transplant’s awareness and education campaign, ‘Pass it on’ will continue to use PR, press, social media, radio, TV, outdoor and cinema advertising to help raise awareness of the law change.

Wales already has an opt out system, after changing their law in December 2015. Jersey introduced the opt out system in July 2019 and Scotland will also be moving to an opt out system from Autumn 2020.

Notes

1. Research was carried out online by Kantar/Research Express among a representative sample of 2,088 respondents in England aged 16+, on 21-23 January 2020

2. The baseline we are using is the average of the surveys carried out in Oct 2018 (54% aware) and Jan 2019 (37%) aware. 

• On 25 February the Department of Health and Social Care presented to Parliament draft regulations setting out organs, tissues and cells which will not be part of the opt out system. This is to ensure that only routine transplants are part of the new arrangements.
• The Human Tissue Authority have prepared a new Code of Practice for healthcare workers. This will ensure that everyone understands the rules and regulations of the new system.
• Subject to Parliamentary approval of regulations and the Code of Practice for Deemed Consent, from 20 May 2020, Max and Keira’s law will be implemented in England.