Home General Info & Awareness Organ Donation : Facts, How It Works & UK’s Opt-Out Law

Organ Donation : Facts, How It Works & UK’s Opt-Out Law

by InvisiblyMe
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Organ donation is a generous act that could drastically improve or even save a lift. England recently introduced a new Opt-Out scheme for organ donation in the hopes of increasing the number of donors, but more donors are needed worldwide to help those in need. Here’s what you need to know about how organ donation works, how to opt in or out, and why it’s so important. 

What Is Organ Donation? 

Organ donation involves giving an organ or tissues to another person who needs a transplant, and it can involve various parts of the body. Donating an organ can literally save a life. While there are living donors, which often involves kidney transplants, this article will look at organ donation after death.

What Can Be Donated?

Many parts of the body can be donated, including various organs and tissues. The lungs, heart, kidneys, liver, pancreas, tissue, small bowel, corneas, bone, and pancreas are some examples. 

In the case of tissue, which is less commonly thought of when considering the term ‘organ’ donation, just one tissue donor could benefit the lives of over 50 people.

Why Should We Donate?

Simply put, donating saves lives. Maybe you’ll be able to make a big difference to someone with a chronic health condition or disability, or maybe you’ll be the person who can save someone’s life. Your donation could bring the gift of health, life and happiness to the patient and their family and friends. 

In 2019, nearly 40,000 organ transplants were performed in the US.

In 2019/20 in the UK, there were nearly 4,000 transplants. This is fantastic news for so many individuals thanks to the advances in science, technology and healthcare.

However, there are around 6,000 people on waiting lists in the UK and over 350 people died in the last year waiting for a transplant. The demand outweighs the availability, which is why the more people that are registered as potential donors the better.

An adult's hands are on light-coloured surface, palms up. On top are a child's hands, cupping a small red wooden heart with a white ECG line drawn on top of it.

Who Can Donate?

Technically anyone can register to donate, irrespective of medical conditions, smoking or age. In the UK, children can register themselves or be registered by parents and guardians. 

Whether you’re elderly, have a medical condition or live with several chronic illnesses, you can still register to become a donor. You never know what your body may be able to do to help another person in need. The assessment will be made at the time of death, or of its inevitability, by specialists. They’ll decide if and what can be safely donated after taking into consideration your lifestyle and medical history.

Who Can’t Donate?

There are only a few conditions that more strictly rule people out from becoming a donor, including Ebola virus, Creutzfeldt-Jakob disease (CJD), active cancer and HIV, though in the case of HIV some individuals have been able donate to others with the same condition, so it’s always worth checking before ruling yourself out. 

How Can We Donate? 

Donation is typically on an opt-in system, whereby individuals must sign themselves up to the donor register, which can often be done online in the first instance. However, some countries have an ‘opt out’ system, meaning everyone is automatically considered to be a donor unless they state otherwise. It’s recommended that you tell those in your life of your decision to be a donor (or not) so that they can support your wishes in the event of your death. 

The regulations for donation vary between countries. For example: 

US

Opt-In System. A transplant program will evaluate any individual wishing to become a donor and make a decision as to whether to accept them. Every transplant team has their own standards and requirements, so if one transplant program doesn’t accept you as a donor candidate, another might.

England 

Opt-Out System. With the new law in England as of 20th May 2020, you don’t need to do anything, you’ll be automatically considered to be a donor unless you express your intention to opt-out. However, you can still sign up if you wish as a means of ensuring your donation decision is honoured. It’s a good idea to speak with your family and let them know of your decision. You can also get an organ donor card to carry if you wish.

A few groups are excluded from auto opt-in, including those under 18 years of age, individuals without the mental capacity to fully understand the arrangements, and those living in England for less than a year prior to their death.

There is no deadline for opting out in England. Opting out isn’t the same as requesting for your details to be withdrawn from the register, which essentially means that there will be no decision recorded for you; if there’s no decision on the register, you’ll be assumed to be a donor unless you’re in an excluded group or you’ve made loved ones know of a decision not to donate. 

What About My Family?

Family and next of kin will be involved, where possible, in the donation process before it happens. This is still the case with opt-out donation in England. If the individual is still alive but death seems inevitable, end of life care talks with the next of kin, friends and family with happen, and that’s when the Organ Donor Register will be accessed and discussed. 

When Are My Organs Donated?

It’s perhaps unsurprising that many people worry that being on an organ donor list means that doctors won’t try as hard to save their lives. Medical bodies stress that this is not the case, that there are strict criteria for assessing and confirming death prior to organs being removed. It’s also stressed that organ donation involved specialists throughout the process to treat the deceased with care, dignity and respect. 

How Many Donors Actually Donate Organs?

According to the NHS, sadly a majority of those that die are unable to donate their organs because of the cause of death, physical condition at the time and other factors. It’s thought that only 1 in 100 individuals in the UK who die are able to donate their organs, which is often when death occurs in an emergency or intensive care unit in a hospital. 

While some may think this suggests there’s no point in signing up because it’s not likely they’ll be able to donate anyway, this is actually all the more reason for having more people on the register. The more people there are, the more choices and options will be available to those who need a donor as a matter of urgency, and to those hundreds or thousands of people waiting on a list for a matching candidate. You never know if it may just be you that could make the difference. 

Can I Donate Some Organs But Not Others?

With the new law in England, you’ll either be automatically consenting to donate all organs, or none if you opt out. If you feel you want to specify which organs or tissue you are comfortable to donate, you can do so on the NHS Organ Donor Register. Here you’ll be able to say whether you want to donate all or some, and then specify what you wish to donate.

Are Under 18s Automatically Donors?

It’s important to note that the opt-out law does not include those under 18. If donation is needed by someone under the age of 18, their family will be asked to decide and to prove consent if they agree. 

What If I Don’t Want To Donate? How Can I Opt Out?

Although there’s much encouragement for donation, there may be some people uncomfortable with the idea due to personal or religious beliefs. Organ donation is still a choice, nobody should feel pressured into it. There’s no deadline to register or opt-out or to change your mind. 

In England, you can record your details online to opt out of donation here.

If you want to donate but have concerns over the process or how it affects your faith, you can make this clear when signing up as a donor, which is still possible regardless of the opt-in system. On the form you’ll be able to note, for instance, that you want NHS staff to discuss your donation with your family to ensure it happens in accordance with your religion, faith or other beliefs. 

 If you’re unsure as to whether you would be suitable, you may be surprised. Don’t let uncertainly or the assumption that because you have a health condition or you smoke that you wouldn’t be able to donate and help change a life.

The New Organ Donation Opt-Out Law for England

As of 20th May 2020, the law regarding organ donation in England has changed. All adults will now be considered to be an organ donor unless they are either in an excluded group or have specifically opted out of organ donation. 

This change was in part prompted by the experience of young Max Johnson. This amazing little boy and his family were campaigning for organ donation as he waited on the list for a heart transplant, and Max has continued to campaign in the time since. He was 8 years old when he was rushed into hospital in 2016 with heart failure and an enlarged heart condition called dilated cardiomyopathy.

He was put on the urgent list for a transplant and thankfully he was able to get this thanks to Keira Bell, a beautiful young girl who sadly lost her life too early in a car accident. It’s thanks to her that four other lives, included Max’s, have been saved. The law is commonly known as ‘Max’s Law’ or ‘Max and Keira’s Law’.

Emma and Paul, Max’s parents, have written a book in honour of telling their story and encouraging readers to give thought to organ donation, with a proportion of the royalties to be donated to different charities. (Golden Heart is available on Amazon).

A Generous Gift Of Life 

Donating an organ is one of the most generous things a person can do to make someone else’s life better or to save a life altogether. Thanks to the wonders of modern medicine and surgery, more is now possible than ever before.

We may all like to hope there’d be a donor if we needed one; will we be there to help another person who needs it when the time comes? It’s a personal decision that only you can make. 

Further Information :

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How do you feel about organ donation & the new opt-out law?

Caz  ♥

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36 comments

ashleyleia July 24, 2021 - 5:19 pm

Most provinces in Canada have an opt-in system. For a long time, opting in was connected to people’s driver’s licenses, but a number of years back they changed it so that you actually have to sign up directly with the registry. It’s a stupid system, because it relies on people going out of their way to sign up, whereas by default, no one wants to be bothered going out of their way for anything.

The worry about not being cared for properly seems odd. I’m sure that for all these years that organ donation has even been a possibility, that wasn’t an incentive for doctors to pull the plug prematurely.

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InvisiblyMe July 26, 2021 - 10:41 pm

You’re right, having to sign up on your own steam is not going to entice people, especially those who feel they can’t be bothered. Sometimes it’s just a case of people not having given it any thought before or believing it’ll be a hassle to do, which is where opt-out systems (providing people are aware of them and their rights to opt-out should they wish) are much better for increasing donor numbers. I personally think it’s absolutely fantastic.

I can understand the concern with care being rushed or withheld if you’re a donor; it doesn’t have to be true for people to worry about it, but I suppose if you’re older then it’s not too far fetched to think a hospital wouldn’t be too bothered about you compared a younger patient who needs your organs as you won’t be as financially viable either. Very unpleasant. Again, doesn’t have to be true but I can see why some would worry about that when you know how much financial and political agendas are involved in healthcare. xx

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Sandee ???? July 24, 2021 - 5:24 pm

In the U.S. you can opt-in and have that put on your identification. It’s something how few donate. Well written as always.

Have a fabulous weekend, Caz. ♥

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InvisiblyMe July 26, 2021 - 10:43 pm

Thanks, Sandee. It’s good to be aware of the system, how it works and think about your wishes. It’s great if more people can be potential donors because there’ll never be a shortage of need sadly. I hope you have a great week ahead! ????

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Rachel Duerden July 24, 2021 - 5:45 pm

Organ donation to me is a logical step. Our organs are of no use to us when we’re dead, so someone else might as well have them!
I joined the organ register several years ago. It’s a nice thought to me that if I die, someone could benefit from my death.

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InvisiblyMe July 26, 2021 - 10:45 pm

I feel the same. I can understand people feeling uneasy about the idea, but in reality (unless you have religious reasons) donating your organs is an incredibly generous, logical and insanely helpful thing to be able to do. The sad death of one person could mean literally a new lease of life for another person, and there’s something very beautiful and heartening about that, isn’t there? ???? xx

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Despite Pain July 24, 2021 - 6:07 pm

I was so glad earlier this year when Scotland changed the law to become opt-out. I hope it will make more organs available and help more people.

My Dad spent the last few years of his life getting kidney dialysis three times a week. If he’d been younger, he’d have been on a waiting list for a kidney transplant. He was over 80 when it started and even if the hospital had considered it, he’d have said no. He always said it wouldn’t have been right when so many younger people are waiting. But during those years, he saw some very ill people desperately waiting on a phone call. Kidney dialysis can’t go on indefinitely.

It’s always a bittersweet moment I suppose when a patient receives that call because while one family celebrates, another is grieving. Personally, if any of my organs are good enough to help someone else, I would be more than happy for them to be used. But, like you say, it’s a personal choice.

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InvisiblyMe July 26, 2021 - 10:51 pm

I’m glad more places are doing the opt-out system, too. There are a few reasons people might prefer to not donate, but I imagine there’s also a huge proportion of people who’ve just never given it much thought or got around to registering. The opt-out system – providing people know what’s involved and their rights to opt-out – should exponentially grow the list of potential donors, which is a wonderful thing.

I’m so sorry about your dad. What he went through himself was heartbreaking enough but it must have been hard for him seeing others so poorly as well. For him to have anticipated turning down a donation should it have been offered just shows his compassionate heart, but it still gets me when I read things like this from older individuals. Every life counts, and being older should make people feel they’re not worth the surgery, the organ, or what have you. In an ideal world there would be enough to go around for everyone and no shortage of medical funding, either. It’s eye opening to see the amount of people who wait on lists, and many of them sadly don’t make it. It makes you wonder whether all of these new developments in technology, like growing cells and harvesting organs, could help fill this gap a little. I’d also like to hope the opt-in systems will help considerably, too, but it seems there are a lot of factors involved in whether an organ would even be viable from a willing donor at the time of death.

I feel the same as you – I would absolutely love if something of mine (I’ve no idea what as I’m not sure I’d be able to pay for anyone to take my organs) could help give someone else a better life, or even save their life. ???? xx

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The Oceanside Animals July 24, 2021 - 7:02 pm

Charlee: “We didn’t know there were places where organ donation is opt-out, but it seems like a good idea to us.”
Chaplin: “Yeah, because of the so-called tyranny of the default, we’re pretty sure many people here in the U.S. don’t opt in, even though they probably wouldn’t otherwise opt out.”

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James Viscosi July 24, 2021 - 7:13 pm

My driver’s license has the little pink donor dot on it!

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InvisiblyMe July 26, 2021 - 10:54 pm

I agree, Chaplin – I imagine a lot of people don’t really give it much thought or get around to registering, so opt-out makes sense. It’s great you’re a registered donor, James. That’s a wonderful thing to be able to do ????

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B July 24, 2021 - 7:04 pm

There’s nth as noble as it.

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InvisiblyMe July 26, 2021 - 11:24 pm

Noble indeed. Absolutely priceless.

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Smelly Socks and Garden Peas July 24, 2021 - 8:43 pm

I’ve been on the donor register since I turned 18. Once I’m dead my organs will be better use to someone else. Indeed, when my youngest was born we donated his cord to research into treating eye injuries from IEDs.

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InvisiblyMe July 26, 2021 - 11:27 pm

It’s fantastic you registered at such a young age. I don’t imagine there were many who voluntarily signed up to be an organ donor by their 50s let alone age 18. It’s fascinating you were able to donate the cord after birth for research, too. That’s an incredible thing to be able to do ????

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Shell-Shell's????tipsandtricks July 25, 2021 - 6:31 am

I’m an organ donor!!! =) My friend passed away in a motorcycle accident, and her eyes restored someones vision. <3

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Michelle July 25, 2021 - 2:11 pm

I’m sorry you lost your friend. It’s great that she was able to help someone even after she was gone!

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InvisiblyMe July 27, 2021 - 5:08 pm

I echo Michelle – I’m very sorry about your friend. That’s an awful tragedy, but even after she was gone she was able to literally give someone else the gift of sight, which is an incredibly beautiful thing to happen ???????????????? xx

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Michelle July 25, 2021 - 2:10 pm

I signed up to be an organ donor many years ago. I figured I’m not going to need my organs after I die anyway and I could possibly save a life so why not! Great post!

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InvisiblyMe July 27, 2021 - 5:29 pm

“Why not?” That’s a good way to look at it. It’s fab you signed up years ago – I think the donor scheme needs more people like you! ???? xx

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Blanca July 25, 2021 - 8:54 pm

Such a great post! I always had so many questions about this subject and you shared a very interesting insight on organ donation and how the organ donation system works in the UK. Thank you so much for sharing this!

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InvisiblyMe July 27, 2021 - 6:02 pm

I’m glad it could be helpful, Blanca! I learned quite a bit from researching it for this post so I figured I wouldn’t be the only one with questions. Thanks lovely! xx

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Kymber July 25, 2021 - 9:12 pm

As soon as I got my first license to drive, age 16, I opted in. May as well, right? 🙂 Once again, I learned so much reading your article, Caz. Hope you’re having a great weekend!

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InvisiblyMe July 27, 2021 - 6:07 pm

Thanks, Kymber! ???? It’s fantastic you opted in at such a young age. I don’t imagine too many folks would by age 16, even at age 50 or 60 many people haven’t given it much thought or got around to registering so the opt-in system makes sense. I hope the week ahead treats you well! xx

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Greg Dennison July 26, 2021 - 12:11 am

I’m in the US… as far as I know, my state has an opt-in system, and you opt in when you get a driver’s license or government identification card. I have opted in.

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InvisiblyMe July 27, 2021 - 6:09 pm

It’s great that you’ve opted in – it’s a generous & kind thing to do ???? I hadn’t realised there’s the option when getting a driver’s licence or ID to do so but that’s a good idea. It brings the option a little closer to people.

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Animalcouriers July 26, 2021 - 9:30 am

I was delighted when the law changed and you now have to opt out. The decisions family make are often not based on what the individual wanted but the questions are so seldom asked.

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InvisiblyMe July 28, 2021 - 4:43 pm

That’s a very good point and I agree ???? Unless you’ve thought about organ donation and made those desires made very clear to friends and family, assuming they uphold them, it’s not likely anyone will know what you wanted and family are then in an awful situation when the time comes.

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notesoflifeuk July 26, 2021 - 7:09 pm

We’ve discussed this as a family numerous times so that everyone knows our wishes (which are to donate).

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InvisiblyMe July 28, 2021 - 4:44 pm

That’s great – I don’t think it’s a conversation all that many people have, and it’s easy to see why when it’s an uncomfortable topic. That said, it’s an incredible thing to be able to do ???? xx

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Jacqui Murray July 26, 2021 - 11:10 pm

The opt-out is a good idea. I always opt-in but it takes making sure I don’t miss that box.

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InvisiblyMe July 28, 2021 - 4:45 pm

Yeah, it’s good to be mindful that your option is correctly registered. I think the opt-out system is absolutely fantastic, providing everyone is aware of their right to withdraw should they wish.

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Leena T Pandey July 27, 2021 - 9:27 am

Useful info!

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InvisiblyMe July 28, 2021 - 4:46 pm

Thanks lovely, glad you found it useful! ????

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catherinescornersite August 10, 2021 - 7:36 pm

Think it’s such an important topic for family’s to discuss – making it opt-out makes it easier to get people to donate.
Sadly my dad passed away at the end of last year and we always knew he wanted to donate so was an easy decision for us. What amazed me was his liver went to someone half his age so really gave a young man a chance at a happy Christmas.

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InvisiblyMe August 11, 2021 - 11:01 am

I am truly so very, very sorry about your dad. I can’t begin to imagine what losing a parent is like but I’m glad he was able to have his wishes to donate upheld and actually made a reality. So many on the donor list aren’t able to donate for whatever reason, so the fact a part of him could give another man a chance at life is absolutely incredible. Sending lots of love and best wishes to you & your family ???? xx

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