In this section, we answer frequently asked questions about the new organ donation system in Wales.
What is the new ‘soft opt-out' system?
Wales moved to a soft opt-out system for organ donation on 1 December 2015.
9 out of 10 people support organ donation, but only 3 out of 10 people in Wales had put their names on the Organ Donor Register. Under the soft opt out system, if you have not registered a clear organ donation decision (opt-in or opt-out), you will be treated as having no objection to being an organ donor. This is called ‘deemed consent'.
It is called a soft opt-out system because your family will always be involved in all discussions about donation. They will need to be present to answer questions about your health, lifestyle and where you lived. They could also say if they knew you did not want to be an organ donor.
So it’s important to talk to your family about your organ donation decision.
If your family or appointed representatives cannot be contacted, donation will not proceed.
What does ‘deemed' consent mean?
Deemed consent means that if you do not register a clear decision either to be an organ donor (opt in) or not to be a donor (opt out), you will be treated as having no objection to being a donor.
This is the main change introduced by the Human Transplantation (Wales) Act 2013. It came into effect on 1 December 2015.
Deemed consent applies to people over the age of 18 who live and die in Wales. Deemed consent does not apply to living donation.
What does the system mean for me?
The new system makes it easier for people in Wales to become organ donors.
Your options are:
If you want to be a donor then you can:
- Register a decision to be a donor (opt in) or
- Choose to do nothing and have your consent deemed. If you choose to do nothing, you will be regarded as having no objection to being an organ donor.
If you do not want to be a donor, then:
- Register a decision not be a donor (opt out).
Are children covered by Deemed Consent?
No. Deemed consent only applies to people over the age of 18.
When children reach a point that they can understand organ donation they can record their decision on the register or appoint someone to make organ donation decisions on their behalf if they wish to do so.
Until they can understand organ donation, the decision to donate, or not donate, falls to a child's parents or guardians. Parents and guardians can register a decision on behalf of their children if the child is unable to understand organ donation.
If you are treating everyone who hasn't opted out as if they have no objection to organ donation, did you keep the option to opt in?
When we asked people about this, they said they wanted to be able to keep the option of registering a decision to be a donor. So it is still be possible to register a decision either to be a donor or not to be a donor if you want to. This is called 'express consent'.
It’s also important to remember deemed consent only applies in Wales. If someone dies elsewhere in the UK the medical team will have to rely on express consent, either the person having opted in or their family giving consent on their behalf.
What happens if I have already registered to become a donor on the Organ Donor Register?
If you had already opted in on the NHS Organ Donor Register before 1 December, you still have the same choices as everyone else under the new system.
You can choose to leave your decision as it is – if you do this, it is treated as an opt in decision. Or you can remove your record from the register completely and have your consent deemed. Or amend you decision to opt out if you have changed you mind.
You can change your decision at any time.
I don't want to be a donor - can I register an opt-out decision?
You can register your decision not to be a donor (opt-out) online or by calling 0300 123 23 23 (Calls to this phone line will be answered by the NHS Blood and Transplant Service).
You can record your decision quickly and easily online or over the phone. You can change your organ donation decision at any time. Whatever your organ donation decision, make sure you have told your loved ones.
How do you decide who lives in Wales?
You need to be aged 18 and over, live in Wales for more than 12 months and die in Wales for the new system to apply to you.
For most people, it will be clear if they are resident in Wales or consider Wales their home. Where it is unclear, for instance a student who has a term time address in Wales but also has a room in their parents' house in England, the medical team will discuss residency with family and friends.
Make time to talk to your family about your organ donation decision. It will help you know that your wishes will be carried out and it can help make any decision easier for your family - whether or not you consider Wales your home.
To be a Welsh resident, for the purposes of deemed consent, you must:
- have a Welsh address (in one of the Welsh local authority areas)
- normally live at that address (be 'ordinarily resident') and
- have lived at that address (or another address in Wales) for twelve months or more.
What happens if I live in Wales but die in England?
Deemed consent does not apply in England. This means if you live in Wales but die in England then your consent cannot be deemed to have been given. This is because the Welsh system doesn’t apply in England.
If you have registered your decision on the Organ Donor Register, either to be a donor or not to be a donor, then that decision will be respected.
If you have not registered an organ donation decision, the decision would pass to your family.
In 43% of cases where organ donation is possible, families say no to donation because they don't know whether their loved one wanted to be a donor. Make time to talk with your family about your organ donation decision.
I live on the border, or spend a lot of my time in other parts of the UK, is there anything I need to know?
For deemed consent to apply, you need to both live and die in Wales.
As deemed consent does not apply in the rest of the UK if you die whilst in England, Scotland or Northern Ireland express consent would apply. So if you have not registered a decision on the Organ Donor Register, then the decisions around organ donation would fall to your family.
So if you want to become an organ donor but spend a lot of time elsewhere in the UK, or live on the border and receive NHS treatment in England we would advise you to register an opt in decision.
How did this law come about? Were the people of Wales consulted?
The law was passed by the National Assembly in July 2013, given Royal Assent in September 2013 and came into force on 1 December 2015. There was a lot of consultation with the public and the draft law was scrutinised in great detail by Assembly Members. You can read more about the passage of the Bill through the Assembly and the history of the new law.
Role of family and friends
What is the role of family members in deemed consent cases?
Families have a very important part to play in any discussion about organ donation.
The UK has amongst the highest number of family refusals to donation in Europe. This is because when a family does not know their loved one's decision they tend to say no to organ donation.
Under deemed consent family involvement continues to be essential. Families of donors are asked about some elements of the deceased's medical/lifestyle history, residency information and possibly confirm that the deceased had mental capacity to understand organ donation.
The deceased family and close friends can also inform medical staff if the deceased objected to organ donation but had not registered an opt out decision. If this happens then donation will not go ahead. However this objection would have to be based on the views of the deceased.
What if family members cannot be contacted?
If your family or close friends cannot be contacted your consent cannot be deemed. That is because your family are needed to confirm whether you were "ordinarily resident" in Wales.
Families also need to provide useful information about the deceased's background before any organ donation can go ahead.
What about people whose family cannot be contacted, but who have registered a wish to be a donor?
If you want to be an organ donor (you have opted into the Organ Donor Register), then you have given express consent. So it is not necessary to seek consent of your family members.
But while it may be possible to proceed legally, for medical reasons it will not happen. This is because your family will need to provide information about your lifestyle and medical history. These questions help to check the quality and safety of donated organs.
Can family members overturn a recorded opt-out decision?
If you opt out of organ donation, your decision must be respected and no organs will be taken. If you die in a way you could become an organ donor but have opted out, then it is likely your family will be informed of your decision.
Your family would need to produce clear evidence that you changed your mind to overturn an opt-out decision.
How does the soft opt-out system work for those without mental capacity?
Where a person has not registered an opt-in or opt-out decision, there will be a discussion with their family. If following those discussions it is apparent they lacked capacity to understand organ donation and or the opt out system, their consent will not be deemed to be given.
In these cases, if the person has an appointed representative they will be asked to make the decision. If the person has not appointed a representative the decision will fall to their family or close friends.
I've heard that I can appoint a representative to make a decision on my behalf. What does that mean?
If you don't want to make an organ donation decision yourself you can appoint someone to make that decision for you. If you die in circumstances where donation is possible, this person will then be asked if your organs should be donated.
To appoint a representative, you need to complete this form.
If your representative cannot be contacted in time, then your family will be asked to make the decision. If your family also cannot be contacted, then donation will not proceed.
The Organ Donor Register
How do you record people's decisions?
The Welsh Government has worked with NHS Blood and Transplant to redevelop the NHS Organ Donor Register to be able to record opt out and opt in decisions.
If you know you want to be a donor then you can:
- register a decision to be a donor (opt-in) or
- choose to do nothing and have your consent deemed. By doing nothing you will be treated as having no objection to organ donation.
If you know you do not want to be a donor, then you can:
- register a decision not to be a donor (opt-out).
When you register a decision to be an organ donor you can choose to donate all organs and tissues or choose which organs or tissues you wish to donate.
You can register a decision at any time online or by ringing 0300 123 23 23 (Calls to this phone line will be answered by the NHS Blood and Transplant Service).
I only want to donate some of my organs/I do not want to donate a specific organ or tissue, can I still do this?
Yes. If you register a decision to be an organ donor you will be able to choose to donate all organs and tissues or, as you can now, select specific organs and tissues to donate.
The organ donation process
Which organs and tissues are covered by the soft opt-out system?
The organ and tissues covered by the soft opt-out system will be the same as the previous system. Donation covers organs and tissues including:
- small bowel
- corneas and sclera (from the eyes)
- valves and pericardium (from the heart)
- tendons and cartilage
Not all the above organs are donated in every case. The organs donated depends on clinical assessment and discussions with your family based on what they know you would have wanted.
If you join the Organ Donor Register, you can choose to donate all organs or pick specific ones you are happy to donate.
Are things such as face,limbs and uterus included?
No, deemed consent only applies to "conventional" organs i.e. the ones listed when you sign up to the Organ Donor Register.
You may have heard of advanced forms of transplant in the news such as face, limb or uterus. These new forms of transplants are sometimes called 'novel' transplants and are only carried out in a small and controlled number of cases. Deemed consent does not apply to 'novel' procedures. These types of transplants require you to have given express consent.
Does the opt-out system mean a change in the way patients are cared for, including the treatment they receive up to and including their death?
No. Your doctor's primary focus is to save your life.
There are very clear and strict standards and procedures for confirming death. These are the same for everyone, whether you die in a way you could become an organ donor or not.
The doctors who care for you and the ones who would confirm that you are dead are independent of those responsible for the retrieval and transplantation of organs. This will not change.
How are organs donated under deemed consent be used?
The way that organs and tissues are allocated by NHS Blood and Transplant, the organisation responsible for retrieval and allocation of organs, has not changed. So organs donated in Wales will be used in Wales or any other part of the UK where there is a suitable recipient.
Not all organs donated in Wales can be used for Welsh patients because there will not always be a suitable match to a person on the waiting list. However, having more organs available will benefit Welsh patients, who may not have to wait as long for a suitable organ to become available.
Surely the soft opt-out system compromises individual freedoms and organs will become assets of the state?
No it doesn't. If you register an organ donation decision (opt-in or opt-out) then deemed consent will not apply to you.
By not registering a decision, you will be treated as having no objection to being an organ donor. But the system still allows families to object on your behalf if they know you did not want to be a donor.
You can change or register your organ donation decision at any time online or over the phone.
Does the Act comply with Human Rights legislation?
Yes, the Human Transplantation (Wales) Act complies with Human Rights legislation.
1st December 2015The time when Wales has changed the way you become an organ donor.
days until the way you become an organ donor will change in Wales.