Organ Donation Opt-out in England Planned for 2020

Peter Russell

August 06, 2018

Editor's Note: 18th March 2019 - the Organ Donation (Deemed Consent) Bill passed into law on March 15th 2019. This means that from 2020, adults in England will be considered potential donors unless they opt out or are excluded for other reasons.

An opt-out system for organ donation could be in place in England by early 2020, subject to parliamentary approval.

The proposals outlined by the Government would mean that adults would be considered as potential organ donors unless they have opted out of the donor register or are in an excluded group.

The change, also known as 'deemed consent', could save up to 700 lives each year, ministers said.

An opt-out system has been operating in Wales since December 2015. Scotland published proposals for a similar scheme earlier this year, and Northern Ireland is debating whether to change its system.

Max's Law

The opt-out system in England would be known as Max's Law after Max Johnson, a 10-year-old boy from Cheshire whose life was saved by a heart transplant.

The Government's proposals have been set out following a 12-week consultation period which drew responses from 16,974 individuals and 73 organisations, making it the largest consultation ever run by the Department of Health and Social Care.

Legislation for the changes was introduced last year and will return to the Commons this autumn for MPs to vote on the proposals. If approved, the new system would come into effect in spring 2020 to allow for a year's transition period.
 

Making it Easier for People to Register Their Preference

In the meantime, from December this year, people will be able to record their organ donation preferences on the register via the new NHS app. From 2019, users will be able to check and amend their registration details.

Some people would automatically be excluded from the new system. They are:

  • Children under 18

  • People who lack the mental capacity to understand the changes and make an informed decision

  • People who have lived in England for less than 12 months

The Government said it wanted to encourage people to discuss with their families their wishes about organ donation. Health Minister Jackie Doyle-Price said: "Although the new default position will be that donation goes ahead unless someone has recorded a wish to not donate, clinicians will never proceed if the family objects strongly. That is why we want everyone to make their wishes known to their family to ensure that preferences in life are honoured after death."

The Government said it hoped the changes would address the "desperate shortage" of organs, which has resulted in around 5100 people in England waiting for a transplant. In 2017-18, there were 1269 deceased kidney donors but at the end of March this year there were 4298 people on the waiting list for a kidney transplant, meaning that less than a third of these people were able to receive the kidney they needed. People who receive a transplant had typically been on the waiting list for at least 2 years.

The current shortage of organs is even more severe for people from black and Asian communities. People from these communities are more likely to develop conditions such as high blood pressure, diabetes, and certain forms of hepatitis than white people, which means they are more likely to need a transplant.

It remains unclear whether the new system will increase the number of available organs for transplant. An analysis published 2 years after the opt-out system was introduced in Wales found no consistent change in deceased organ donations in Wales, nor any rise in donors overall.
 

'Transforming Lives'

Nevertheless, proposed changes in England have been welcomed. Professor Helen Stokes-Lampard, chair of the Royal College of GPs, said: "Organ and tissue donation has helped transform the lives of thousands of patients and their families at incredibly difficult times in their lives. We welcome that the Government is planning to introduce a system of presumed consent that should ensure patients needing a transplant are given the best possible chance of life.

"However, until this new system comes into effect in 2020, the country is likely to remain desperately short of donors and too many lives will continue to be cut short because of a chronic lack of organs – many of which are completely safe and suitable to use. The College recognises that some people are opposed to organ donation for a number of reasons, and that must be respected, but we urge anyone else who is not currently a donor to become one."

Simon Gillespie, chief executive of the British Heart Foundation, commented: "It’s still really important for all of us to have conversations with our loved ones about organ donation so our wishes can be met if the worst should happen."

Anthony Clarkson, interim director of organ donation and transplantation at NHS Blood and Transplant, said: "There is an urgent shortage of donors and last year 411 people died on the transplant waiting list. 

"We support all activity that increases the availability of donated organs for life saving transplants and we welcome the Government's commitment to organ donation."
 

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