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Date published: May 13, 2020

Organ donation law is changing in England and Scotland

From 20 May 2020, organ donation in England will move to an ‘opt out’ system. The ‘opt out’ system will also apply in Scotland from March 2021. Wales has been operating an ‘opt out’ system since December 2015.

The new system is also referred to as ‘Max and Keira’s Law’, after the young boy received a heart transplant, and the young girl who donated it.

The changes to the law means that Shared Lives scheme workers, Shared Lives carers and Homesharers will be considered to have agreed to be an organ donor when they die, unless they have recorded a decision not to donate. There is no urgent deadline to record your organ donation decision.

People supported by Shared Lives

England, Wales and Scotland

Some groups of people are excluded from the new ‘opt out’ system. These include those under the age of 18, and people deemed to ‘lack the mental capacity to understand the new arrangements and take the necessary action’.

Under the Mental Capacity Act (MCA), formal mental capacity assessments should be carried out by a best interest assessor. The best interest assessor will act on the logic that a person is presumed to have capacity regarding a particular decision unless they cannot do one or more of the following:

  • Understand information given to them.
  • Retain that information long enough to be able to make the decision.
  • Weigh up the information available to make the decision.
  • Communicate their decision – this could be by talking, using sign language or even simple muscle movements such as blinking an eye or squeezing a hand.

People supported by Shared Lives, or Homeshare where appropriate, who are deemed to have capacity to decide about organ donation by a best interest assessor should be given accessible information (see the information and links section below).

Northern Ireland

At present, Max and Keira’s law does not affect organ donation in Northern Ireland. If you want to be an organ donor, or a person being supported by Shared Lives expresses a wish to be an organ donor, you can opt in by joining the NHS Organ Donor Register and sharing your decision with your family. You can also record a decision not to be a donor.

Information and links

The English organ donation decision registry can be accessed here, which will show you the following four options:

  • Register to be a donor
  • Register not to be a donor
  • Amend your registration
  • Withdraw from the register (i.e. remove an existing registration)

The Welsh organ donation decision registry can be accessed here. When you click on the link it takes you to a page where you can register your decision:

There are resources online for explaining organ donation, including this easy read guide which has graphics to help people understand the process. As Shared Lives carers, Shared Lives schemes and Homesharers, you can also get the facts about organ donation from experts to make an informed choice.

Topics covered include:

  • faith and organ donation
  • cornea donation
  • funeral arrangements
  • consent
  • family involvement
  • The NHS’s duty of care.