New organ donation law

On the 20th May 2020, the law concerning organ donation in England changed. The decision as to whether or not to donate, remains yours. Record your decision through the organ donor website and ensure your family are aware of your wishes.

Tragically, last year over 400 people in the UK died whilst waiting for an organ transplant.

Currently, there are 6000 patients on the UK Transplant Waiting List. The Organ Donation Act passed last week which could save at least that many lives per year.

From now on, medical staff will presume consent for organ donation in England, unless people opt out or are in an excluded group. This should lead to far more organs available for people waiting for transplants.

The family will still be able to have a say and the medical profession will continue to respect your faith, beliefs and culture. Everyone still has a choice whether or not you wish to become a donor. You can read more facts about organ donation to help you decide.

The new law, known as Max and Keira’s Law, has been named after two very special children.

Max and Keira’s story

Keira Ball, from Devon, was nine when she was involved in a car accident with her mum and brother.

Her father Joe saw the organ donor consent team after doctors in Bristol confirmed they could not save her life.

Keira saved four lives by donating her heart, liver, pancreas and kidneys. Her heart went to Max Johnson, who was also nine years old.

At the time of Keira’s accident, Max was in hospital in Newcastle with heart failure following a viral infection. He was being kept alive with a mechanical pump.

The operation was a success and Max, now 12, is doing well, although the anti-rejection drugs he takes daily, have some unpleasant side-effects.

Max’s story prompted the prime minister to pledge to introduce presumed consent for organ donation in England.

Originally the Max Law, the law is now ‘Max and Keira’s Law’ to reflect the importance of the donor’s role.

Keira’s and Max’s families want to encourage conversations around organ donation and both back public education campaigns.

Loanna Ball, Keira’s mum, told the BBC: “If this issue came up in school from a young age, children would happily talk about it with their friends and family; it would be an everyday conversation.”

The family has set up a charity in memory of their daughter to offer support to bereaved families.

What is the new law and how is it different?

The new law works on a basis of presumed consent meaning you no longer need to opt-in.

Those excluded from the plans include:

  • children under 18
  • people who lack the mental capacity to understand the changes for a significant period before their death
  • people who have not lived in England for at least 12 months before their death
  • Presumed consent has been operating in Wales since December 2015. Because of this, Wales have the highest organ donation rates in the UK at 75%.

Health Secretary Matt Hancock said, “Organ transplants are one of the modern miracles of science – helping offer hope in the midst of tragic loss.

80% of people in England support organ donation but only 38% have opted in. This means families have a difficult decision when a loved one dies. It is still open to relatives to block a donation under this new act.

What organs can you donate?

The most common transplants are:

  • Kidney
  • Heart
  • Liver
  • Lung

Others include:

  • Pancreas
  • Small bowel
  • Tissues such as corneas, heart valves, skin and bone

Organ donation and BAME communities

The new law should hopefully help address the disproportionate impact on BAME patients waiting for organs. Members of the Asian community are vastly underrepresented as donors on the NHS Organ Donor Register.

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 have discussion with their family members.”

“At a time when COVID-19 appears to have hit BAME communities hardest, we should remember that a shortage of BAME donors means that patients from these same communities wait longer for a transplant and are more likely to die waiting.”

What individuals can do

Firstly, it is important to educate yourself about organ donation. Reading powerful stories like Max’s, learning about how it works and initiating open chats with your family.

The government are launching a public awareness campaign to make sure people understand the new system and the choices they have.

If you don’t feel comfortable being an organ donor, for whatever reason, it is easy to opt out. You simply go online at https://www.organdonation.nhs.uk/register-your-decision/register-your-details/

If there is no recorded decision for you on the NHS Organ Donor Register, medical teams will ask your family if they have any information that shows whether or not you want to donate.

Emma Hammett
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