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  • Writer's pictureTeam Nellie

Mental Capacity and Organ Donation, Max and Keira's law.

Updated: Jan 19, 2023

Keira Ball was nine years old when she died in a car accident. But her donated organs saved the lives of four people, including Max Johnson, who received her heart. Max is now 11 years old and doing well.

Max and Keira's story was the prompt that changed the law surrounding organ and tissue donation as of the 20th May 2020.

This change means all adults in England will be considered to have agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups.

One of these exclusion groups is those that lack mental capacity.

Organ donation has always been an emotive subject as the decision can often incorporate religious beliefs, social conscious and personal values.

And often these things can conflict with each other.

For many people where capacity is a doubt, they could, at their deaths, be deemed not to have had the capacity and regardless of their wishes not be included as part of the donor organ register.

Three things can ensure wishes are adhered to:

  1. Whether your choice is to opt-in or out make sure you register this choice at

  2. If there are doubts about the individuals capacity ensure a mental capacity assessment is completed by a competent professional and recorded electronically, and where relevant review this periodically.

  3. Complete a living will or advance directive and include your choice within and where relevant review this periodically.

If you are a Deputy or an appointed Lasting Power of Attorney, it may be that as an individuals voice, you are in the position to ensure the rights to opt-in or out are upheld.

Our team at Nellie Supports can help with completing mental capacity assessments and also have those difficult discussions around advanced directives in a calm, therapeutic and professional manner.

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