Organ donation – the rules have changed

Since earlier this year, virtually everyone has become an organ donor unless they have opted out. Chase reporter ANTONY CLAY finds out more

NEW rules over organ donation came into effect earlier this year which have an impact on everyone.

With all the confusion over coronavirus you might be forgiven for not noticing that since May virtually everyone who dies will be assumed to have agreed that organs can be harvested to help others.

This reversed the previous assumption that unless you carried a donor card or your bereaved relatives gave permission, organs could not be taken.

The change aims to combat the chronic shortage of organs to help seriously ill people in need of new body parts.

For thousands, a new organ would literally save their lives.

More than 6,000 people in the UK are on the transplant waiting list, while last year over 400 people died waiting for a new organ.

The new rule is being called Max and Keira’s Law though its official name is the Organ Donation (Deemed Consent) Act.

All adults in England are now considered as having agreed to donate their own organs when they die unless they record a decision not to donate, known as opt out, or are in one of the excluded groups.

Excluded groups include people under 18, those who lack the mental capacity to understand the new rule and take the necessary action, and people who have lived in England for less than 12 months or who are not living here voluntarily.

But families will still be involved before any organ or tissue donation goes ahead.

Family members can discuss the situation with NHS Blood and Transplant specialist nurses.

NHS Blood and Transplant’s awareness and education campaign, Pass it On, has helped raise awareness of the law change.

England has introduced the new system after it was proved to work elsewhere in the UK. Wales had an opt out system after changing the country’s law in December 2015 and Jersey introduced the opt out system in July 2019. Scotland will also be moving to an opt out system from March 2021.

Anyone wanting to find out more, can visit where they can also register a decision to opt in or opt out. People can also telephone 0300 303 2094.

Max Johnson is the 12-year-old heart recipient who championed the law change and saw the law named after him and his young donor, Keira Ball.

Max welcomed the decision to change the law.

He said: “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.”

Laura Beattie is one of 6,000 people across the UK still waiting for a transplant.

Laura (31), from Stretford in Manchester, has cystic fibrosis and has been waiting for a lung transplant since August 2018.

She said: “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 do 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.”

Secretary of State for Health, Matt Hancock

Secretary of State for Health, Matt Hancock, said the new rules were vital to save many people’s lives.

He 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.”

One of the first families in England to agree to donation, under the new laws, was the family of Lewis Mcdonough, from Solihull in Birmingham, who died aged 18 after a sudden cardiac arrest. Although Lewis had not recorded an organ donation decision or spoken with his family, he went on to save three lives after donating his liver and kidneys.

Lewis’s mum, Lisa Cruise, who is an A&E nurse at Sandwell Hospital, said: “As a nurse, I had often supported families in coming to terms with the sudden loss of a loved one and even cared for patients who have gone on to be organ donors. However, I never in a million years thought I would ever be the one in that situation. Not least for my handsome, funny, full of life 18-year-old son.

“Yet as soon as I saw the look in the eyes of the consultant who came to speak with me, I just knew it wasn’t going to be good news. Having been the one to break difficult news to families many times before, I recognised a certain look in his eyes that told me all I needed to know.

“Although I was already on the NHS Organ Donor Register, and aware of the recent change in the law, sadly it was never something we had properly discussed as a family. It was almost impossible getting Lewis to have a serious conversation. While I knew straightaway that organ donation was the right decision, I would urge everyone to speak with your friends and family today.

“To know that Lewis has saved lives is our one comfort. I kept thinking that while we were hearing the worst possible news, others would be getting those life changing calls and crying tears of happiness. That was what kept me going.”

The changes in the law came about as a result of years of campaigning by patients waiting for transplant and families of those who have donated. One of these was Fez Awan from Blackburn who, earlier this year, was waiting for his third kidney transplant and knew that his chance of a call was lower due to the fact he is from a South Asian background.

Fez said: “Even though more people from Black and Asian backgrounds are more likely to require a transplant, people from these backgrounds are currently still much less likely to agree to donation.

“For a long time, the topic of death and organ donation has been a cultural taboo; however, I am pleased to say that we are slowly starting to see this change. Younger generations especially are becoming increasingly open to the idea of organ donation. I hope that the change in the law will encourage more people to have an open and honest conversation with their wider family members.

“Without the selfless generosity of the donors and their families who enabled me to receive my transplants, there is a good chance I wouldn’t be here today. Some people might be worried about how organ donation sits with their religion or their beliefs, but all major religions in the UK have given support for organ donation in principle. What greater gift can there be than to be able to save someone else’s life?”

Anthony Clarkson, director of organ and tissue donation and transplantation at NHS Blood and Transplant, said:

“The last six months have been some of the most challenging for both the NHS and the country as a whole, so to see the numbers of people saying yes to organ donation, and in doing so giving the ultimate gift of life at this difficult time, is really incredible. It shows just how strong the support for organ donation is across the country.

“We are humbled that despite everything, the remarkable efforts of organ donation and transplant teams across the country, as well as the enduring support of donor families, has enabled us to keep transplants going for those in most urgent need throughout the pandemic.
“Even though the law around organ donation has now changed, it is important that people know that families continue to be consulted if organ donation becomes a possibility.

“Sadly, many organ donation opportunities are still lost each year, as families don’t know if their loved one wanted to be a donor or not. Please don’t wait: register your organ donation decision and speak with your family today.”

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