What is opt out?
Answers to some of the most common questions about the upcoming changes to the law around organ donation in England.
If you would like to speak to somebody about changes in the law, please call our dedicated line: 0300 303 2094
About the change
About your decision
- Am I losing control of what happens to my body?
- Will you automatically take my organs if I don't opt out?
- I want to donate, do I still need to register?
- I don’t want to make an organ donation decision myself. What should I do?
- If I am happy to donate some but not all of my organs, should I opt out?
- Can I opt out now?
- I want to opt out but I don't want to join a register. What should I do?
- Do I have to opt out on behalf of my children?
Your family's role
Your faith and beliefs
The law around organ donation is changing in England. This means that from spring 2020, all adults in England will be considered an organ donor when they die unless they had recorded a decision not to donate or are in one of the excluded groups.
This is commonly referred to as an ‘opt out’ system.
You can record your decision to opt in or out on the Organ Donor Register.
Those excluded will be people under 18, people who have lived in England for less than 12 months or who are not living here voluntarily, and people who lack the capacity to understand the change.
Adults covered by the change will still have a choice whether they want to be an organ donor and their families will still be involved before organ donation goes ahead.
It is common for laws to be named after campaigners in recognition of their efforts to bring important issues to the public attention.
As the organ donation system is changing in England to increase donation and help more patients get the transplants they so desperately need, it is fantastic that the government has so publicly recognised that without donors there can’t be transplants.
Last year the government publicly announced that the legislation would be commonly referred to as Max’s Law, in recognition of all the campaigning Max Johnson and his family were doing when Max was waiting for a heart transplant and have continued to do since receiving the heart he so desperately needed.
Max’s gift of life came from a young girl called Keira Ball, who tragically passed away aged 9 years old. Her parents made the selfless decision to help others through their own tragedy.
The new opt out legislation does not apply to those under the age of 18.
There has been tremendous progress in organ donation but there is still a shortage of donors. Last year, 411 patients died in the UK on the transplant waiting list.
To continue our progress, we need a transformation in public attitudes. More than 6 out of 10 families agree to organ donation but to meet the needs of patients we need at least 8 out of 10 families to support donation and agree to save and improve lives.
The latest evidence from Wales suggests that consent rates have increased significantly since they introduced the opt out system in 2015. The government is keen to see the same progress in England.
Legislation to change the law around organ donation in England has passed through the Parliamentary process and received Royal Assent.
The ‘opt out system’ will not come into effect until spring 2020. The exact date of when the new system will be implemented has not yet been confirmed by Government.
The changes will not come into effect immediately to make sure there is plenty of time to inform people about what is changing. This will give people time to choose if they want to be an organ donor and to share this decision with their family and friends.
The new law allows 12 months for the health service to get ready for the change and to allow time for a public information campaign which makes people aware that they should make a choice about donation and discuss it with their family.
This time also allows enough specialist nurses to be trained to speak to grieving families about donation at a very difficult time.
No. There are certain groups of people who are not included in the law:
- People under the age of 18
- People who lack mental capacity to understand the new arrangements and take the necessary action
- People who have lived in England for less than 12 months or who are not living here voluntarily
Anyone can sign up to be a donor at any age. But if someone dies under the age of 18 in England, their parents would still be asked to consent on their child’s behalf before organ donation can go ahead. If there was a decision recorded on the NHS Organ Donor Register, this information would be shared with the family.
No. It will still be for you to choose if you want to be an organ donor. And if you don’t want to donate, it’s really quick and simple to record your decision on the NHS Organ Donor Register. The quickest and easiest way to do this is online. If you don’t have internet access, you can also call our contact centre on 0300 123 23 23.
You can update your preferences on the NHS Organ Donor Register quickly and easily at any time. We will not take people’s organs without permission.
Your family will always be consulted before donation takes place. It is important that your family and friends know your choice. This makes it easier for them to honour your choice, whatever that choice is.
No. Organ donation can only happen in a small number of cases. Around 500,000 people die every year in the UK, but only around 1 in 100 of them die in circumstances where they are able to donate their organs. Organs can only be transplanted very soon after someone has died and they need to be in a usable condition. Donors can usually only be people who have died in a hospital intensive care unit or accident and emergency department. Because of these constraints, every potential donor is precious.
Your family will always be asked for their permission before donation takes place so it is really important that you choose whether you want to be a donor and let them know. Discuss it with your family so they can make the decision that honours your wishes.
If you want to donate, the best way to make sure your decision is honoured is to register as a donor and tell your family. The NHS Organ Donor Register will be accessed by a specialist nurse prior to a conversation with your family to check if any donation decision has been recorded.
Telling your family you want to donate and carrying an organ donor card are equally valid forms of consent, but sometimes cards are not available at such a critical time. We would always advocate that you register your decision on the NHS Organ Donor Register and share this decision with your family.
Once the new system comes into effect in England, if you have not expressed your decision to opt out of organ donation and are not in an excluded group, it will be considered that you consent to donate your organs. So even if you don’t record a decision that you want to be an organ donor, you should let your family know what you want.
If you don't want to make an organ donation decision yourself, or if you have specific instructions, and you live in England, Wales or Northern Ireland you can appoint up to two people to make that decision for you. If you die in circumstances where donation is possible, your appointed representative(s) will be asked if your organs should be donated.
Once NHS Blood and Transplant receives your completed form, your information and the details of your appointed representatives will be added to the NHS Organ Donor Register and this information will be available to our specialist nurses if you are identified as a potential donor.
You shouldn’t opt out if you consent to donate some of your organs or tissue. If you opt out, you will be recording that you do not want to donate any of your organs or tissue, and opting out of donation completely.
If you are willing to be a donor but want to specify which organs and/or tissue you would like to donate, you should register as a donor on the NHS Organ Donor Register. During the registration process, you will be able to select which organs and tissue you are prepared to donate. This information will then be available to the specialist nurse in organ donation who looks up your record on the NHS Organ Donor Register. They will discuss what you had consented to donate with your family.
If you’ve already registered on the NHS Organ Donor Register, and have not yet told your family, please let them know.
If you have previously registered as an organ donor and want to update your details or reaffirm your decision, you can complete the 'amend your details' form online.
Alternatively, you can amend your details by phoning 0300 123 23 23.
It is important to share your decision to be an organ donor with your family. This will give them more confidence that they know that you wanted to donate and make it easier for them to honour your decision.
You can change your decision by completing the online form to 'amend your details'.
Your new registration record will be matched with your old one and updated.
If you prefer not to have your wishes recorded on the NHS Organ Donor Register you must tell your family your donation wishes and ask them to honour them on your behalf.
If you die in circumstances where donation is possible, your family will always be asked if your organs should be donated. Your organs will not be donated without their consent.
This law does not apply to children under the age of 18 years old. In circumstances where a donation decision is required for someone under 18, the family will be asked to make that decision and provide consent.
The NHS Organ Donor Register is open to everyone, regardless of age. If a child would like to register their decision, or the parent of a child would like to do that for them, this option is available. The information recorded on the NHS Organ Donor Register would be accessible to the specialist nurses in organ donation who approach the family about the possibility of organ donation.
Yes. Families will continue to be consulted before organ donation goes ahead. There are a number of reasons for this:
- Out of consideration to the family who are facing the loss of someone close to them;
- The family may have important information about the person’s decision around donation that is more recent than any decision recorded on the NHS Organ Donor Register;
- Family support helps ensure important information about their relative, such as their medical, travel and social history is available to our specialist nurses in organ donation. The information that families provide before organ donation goes ahead, together with medical notes and other tests, is vital to understanding whether the person’s organs are safe to transplant into somebody else.
If you live in England, Wales or Northern Ireland you can appoint up to two people to make the final decision about organ donation for you. If you die in circumstances where donation is possible, your appointed representative(s) will be asked if your organs should be donated.
To add appointed representatives to the NHS Organ Donor Register, you will need to ask them to sign the online 'nominate a representative' form in the presence of a witness.
Once NHS Blood and Transplant receives this form, your information and the details of your appointed representatives will be added to the NHS Organ Donor Register and this information will be available to our specialist nurses if you are identified as a potential donor.
If you do not have internet access you can call our contact centre on 0300 123 23 23, and one of our team will arrange to send the form by post.
Yes they are. NHS Blood and Transplant specialist nurses have always explored an individual’s faith and / or beliefs with families as a matter of routine.
In December 2018, NHS Blood and Transplant introduced a new feature on the NHS Organ Donor Register to provide reassurance to people that their religious, faith or belief-based concerns would be honoured during donation.
The NHS Organ Donor Register now includes the option to record if you would like specialist nurses to speak to your family about your faith or beliefs. The nurses will have this information available to them before they speak to their family.
We’re sorry that you haven’t been able to get through. News about the changes has triggered a lot of interest.
If you were ringing to register as an organ donor, amend your existing registration or opt out of organ donation you can do this via our website.
If you have a question in relation to changes in the law, you may find it is answered on this page.
If you would still like to speak to somebody, please try 0300 303 2094 again later. Thank you for your patience.
Remember that the new system doesn’t come into effect until April 2020 so you have plenty of time to find out what you need and to record your choice.
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