On Monday, my Private Members Bill will be introduced, seeking to extend the Welsh system of deemed consent for organ donation to England.
The Bill has received cross-party support from English, Scottish and Northern Irish MPs eager to see the system implemented. The Welsh Soft opt out scheme has been responsible for the saving of 39 lives. An English equivalent is long overdue.
Below is a copy of the EDM I have tabled, a list of the Bills supporters as well as information on the effect of the scheme in Wales.
Those who have agreed to sponsor the Bill are as follows:
Dr Philippa Whitford
In England, in order to donate your organs, you must ‘opt in’. That is you must take the positive step to state that upon your death, you would like to donate your organs to another. In Wales, following the Human Transplantation (Wales) Act 2013, the system is now different. People living in Wales now have three choices:
- If you want to be a donor, you can either register to be a donor (opt in) on the NHS Organ Donor Register or do nothing
- If you do nothing, we will regard you as having no objection to donating your organs. This is called deemed consent.
- If you do not want to be a donor, you can register not to be a donor (opt out) on the NHS Organ Donor Register
It is important to note that this law does not mean that people who feel strongly about not donating must now do so. In fact, the opposite is true. If you feel strongly about not donating your organs you can ‘opt out’ of the system, or appoint a representative to decide this on your behalf when you die.
This Bill would reconcile the position in England, with that of Wales.
Why did Wales change the law?
In 2014-15, 14 people died in Wales while waiting for a transplant.
Organ Donation is rare. Less than 1% of people in Wales die in a way that allows organ donation to take place. In 2014 31,439 people died in Wales. Around 250 of these died in a way that would have allowed them to become a potential organ donor. In 2014/15 only 72 people became organ donors.
Another reason for the shortage is that many families say no to organ donation if they don’t know if their loved one wanted to donate.
The new system will be clearer for everyone. If family members are approached about organ donation, they will know that their loved could have opted out but chose not to.
The Law in Wales and its effects
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. If your family or appointed representatives cannot be contacted, donation will not proceed.
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. Deemed consent applies to people over the age of 18 who live and die in Wales. Deemed consent does not apply to living donation. 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.
The Statistics surrounding organ donation
There are presently 6,599 people waiting on the organ donation waiting list in the United Kingdom. In 2015/16, the figure was 6,463. Yet in 2015/16, there were only 4,605 organ transplants in the UK. Approximately, 71.3%.
In Wales during the same period there were 192 patients on the organ donation waiting list, yet 214 organ transplants. That is 111%.
The figures for Wales prior to the ‘opt out’ system showed that 220 patients were on the active organ transplant waiting lists, yet only 173 organ transplants took place. 78.6% of necessary donations. Although this was still above the UK average, the rise in just one year, as a result of the new law is remarkable.
For context, in England for the same period there were 5,567 patients on the active list, yet only 3,808 organ transplants took place. That is 68%.
Although numbers of donors naturally fluctuate year on year, the Welsh Government says it is confident that earlier hopes of a 25% increase in the number of donors will be reached in future. According to the Welsh Government, only 6% have ‘opted out’ since the changes in the law took effect.
What does your religion say on the subject of organ donation?
Views both for and against
The links above provide information from sources within all of the worlds’ six major religions. Making a donation is an individual’s choice. But it can be seen differently even in the same religious groups. If you have any doubt, get guidance from a senior teacher in your community.
The proposed soft opt out system would not be contradictory to religion or individual choice, as the system allows you to opt out without giving a reason. Your individual and religious freedoms are protected by your personal ability to opt out of the system.
The real difference to everyday life
Cabinet Secretary for Health in the Welsh Government has said "There's a much greater awareness of organ donation itself. More people are having those conversations with their loved ones about whether they want to opt in or to simply leave it as a point of deemed consent. It makes a real difference then to have that conversation at that point in time when it becomes a possibility and makes it much easier for health staff too."
Consultant Dr Chris Hingston, clinical lead for organ donation at University Hospital of Wales in Cardiff, said:
"We've seen a big impact at the bedside in terms of families approaching us to ask about organ donation, but equally families when we asked them if their loved ones wished to become a donor actually know the wishes. Even if that's not to become a donor, so they're refusing, but they're confident that that's the right decision for their loved ones. As a clinician that's all I ever wanted - that there wasn't a grey area where there's indecision and difficulty for families."
Real life change
Bill, 67, was admitted to the critical care unit at the University Hospital of Wales in Cardiff after suffering a stroke and a fall. His daughter Karen said: "Dad had talked about organ donation.
"It's the last serious conversation that we'd had, not knowing that in a few weeks time, that was going to have to happen. It was his decision and I wasn't going to challenge it because it was his decision. I think I would have coped with it a lot worse if I hadn't have had the transplant to focus on. It's like he still had a job to do, even though he couldn't do anything, he was still doing something. He was looking after those organs before they could be given to somebody else. It's made losing him easier because it's like something good has come out of it, and I can't think of any other circumstance when someone dies that something good comes out of it. It's quite a negative final thing, whereas, for dad, it still doesn't feel final because parts of him are living on in someone else. Nothing's going to make up for losing my dad. But it makes it a little bit easier to swallow knowing that he's gone on to help other people. He's always been my hero, even more so now."
The kidney donations helped transform the lives of two people.
Other real stories about organ donation in Wales are available here.