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Amidst the Covid-19 pandemic, the opt-out system in relation to organ donation has been introduced. Since 20 May 2020, the law around organ donation in England has been given a much needed update and has followed the footsteps of Wales. Scotland has confirmed that they will follow suit from March 2021. For clarification, Organ Donation is a process in which one’s organ is removed and transplanted in another person.
So what is the Opt-Out system?
Under the Organ Donation (Deemed Consent) Act 2019, there is a presumption in law that all adults in England are considered as having agreed to be an Organ Donor when they die unless there is a decision stating they do not want this to happen or they are in an excluded group. This presumption is called deemed consent. The excluded groups are; someone under the age of 18, someone who has lived in England less than 12 months before their death or someone who lacks mental capacity for a ‘significant period’ before their death. The excluded groups can still choose to donate their organs and can still join the Organ Donation Register.
Why did the system need to change?
The old system was outdated and in need of reform. There were several issues that needed attention. With the old system, 38% of people in England had opted in, despite 80% of people in England supporting organ donation. If someone had died and their family was unaware of their wishes, then less than half of families would consent to the organs being donated.
I will need an organ transplant in the future. That is a common reality of living with Cystic Fibrosis. You don’t know which chest infection is going to start the deterioration, which chest infection will be the one that does not go away with oral or intravenous antibiotics. Organ Donation is something that anyone could need. Even if you are healthy now, no-one knows whether they will need one in the future.
This new system still allows people to choose whether they wish to donate their organs. Should people wish to opt-out then this can be done through the NHS Blood and Transplants website or helpline which will be reflected on the Organ Donation Register. The helpline number to do this is 0300 123 23 23. People can change their mind if they join the Organ Donation Register and their families will still be involved in the process.
The measures act as a safeguard to protect the individual’s choice of what they want to happen with their organs after they have passed and will still allow families to have their say.
Looking to the future
Wales introduced the opt-out system on 1 December 2015. The NHS Blood and Transplant annual Organ Donation and Transplantation Activity Report for 2018/19 show that in Wales 5.9% opted-out. There were 96 deceased donors in Wales which was an 18% increase of those donated compared to the previous year’s total which was 87. There were 171 transplants from deceased donors. There were 222 people waiting on the Active Transplant Waiting List and 24 patients died whilst being on the active list.
In relation to their families’ involvement, 15 families overruled organ donation. 4 families overruled their loved ones opt-in decision (under the previous system) and there were 11 families that did not support the deemed consent.
In one year, only 24 patients died whilst being on the Transplant List, whereas in that same period in England 408 people died whilst being on that list. Is it likely that everyone who needs a transplant will get on? No. Could the opt-out system save a lot of lives? Yes. As of March 2019, there were more than 6,000 people waiting for a transplant in the UK and 3 people die each day waiting for one.
Covid19 and Donation
Due to the Covid19 pandemic, transplants were suspended for a period of time, however they are now going ahead if it’s safe and appropriate. Every potential organ donor is being tested for Covid19 and if someone has Covid19, then they will not be able to donate their organs.
Experiences of the Organ Transplant List
I’ve been lucky. At 24, I have not had any personal experience with the Transplant List. I nearly did until my Paediatric Doctor secured me a place on a medical trial and it worked.
I wanted to include voices of people who have had experience with the transplant list. One currently is still on it:
Pip – 32 – had been on the transplant list since April 2018. She had her transplant in March 2019. She was told she wouldn’t have to wait long as she was in a good blood group and did not have any antibodies. Antibodies are a blood protein which are produced in response to and counteracting a specific antigen. They attack foreign invaders that can lead to illness. They can attack the new organ as it can be seen as foreign tissue, which could lead to someone’s body rejecting the organ. She had 3 calls and was successful on her 3rd call. A patient gets phoned when there is a possible organ for them. They are not always viable and that decision is made after looking at the medical records of the deceased person and the recipient.
Annie Balfour – 23 – has been on the Active Transplant List since November 2018. During that time her health and lung function has gradually deteriorated so she is reliant on a BIPAP machine which forces oxygen into her lungs when she is struggling to breathe. She’s been on permanent intravenous antibiotics in order to keep her infection levels as stable as possible. There was a period of time during the Covid19 pandemic where she had to be suspended on the list. The suspension has thankfully ceased.
‘The opt-out organ donation system is something I’d been advocating for years. There is no knowing where any of us will be in 5 years or even 5 weeks – but by being an organ donor your actions become life-saving regardless of your own fate. As someone who is currently dependent on the hope of organ donation, I cannot convey deeply enough how happy I am to know that England is now an opt-out country. I can only hope that it will have a positive impact on the amount of transplants being carried out and as a result, the amount of lives changed by organ donation.’
So this is goodbye
Organ Donation allows and illustrates the contribution of someone after they have passed and can save lives. Extensive awareness around organ donation is essential. One donor can save up to possibly nine lives. According to ‘A Transplant booklet for people with CF’, the average wait for someone on the Transplant list is 18 months. There are currently 1,764 people waiting for a transplant in the UK. (Figures accurate when the article was written)
There are things that you can do. On the NHS website, there is an information page to provide you with answers to potential concerns you may have. If you have decided you wanted to donate your organs, you can register your decision and make sure you let your family know and have that conversation. There is assistance with the matter online.
Let’s hope that these vital changes will help those who require a transplant.
By Sophie Balfour