The wait is almost over – weeks to go until the organ donation opt-out system begins

On December 1, Wales will become the first country in the UK to introduce a soft opt-out system for organ donation. The new system will make it easier for people to make a decision about whether or not they want to become organ donors.

Under the new system, if people have not registered a decision to become an organ donor (opted in) or a decision not to become an organ donor (opted out), they will be considered as having no objection to being an organ donor – this is known as deemed consent.

One person who is celebrating the end of a personal waiting game is Kayleigh Old, 29, from Cardiff, who had a life-saving lung transplant in June.

For Kayleigh, dealing with cystic fibrosis has been a way of life for as long as she can remember. A lung transplant has given Kayleigh the opportunity to live a longer life – but she is one of the lucky ones as one in three people with cystic fibrosis on the lung transplant list will die while waiting for suitable organ donor.

Kayleigh, who works for the Cystic Fibrosis Trust in Wales, was diagnosed when she was two months old. She has had treatment for the genetic disorder, which affects mostly the lungs, but also the pancreas, liver and intestine, throughout her life.

Kayleigh feels she’s had a relatively normal childhood, and has worked her way through the education system, achieving a 2:2 in physiotherapy at Bristol University. After graduating, Kayleigh’s condition deteriorated and she was eventually put on the organ transplant list. After spending eight months waiting for the phone call, Kayleigh eventually received the life-changing transplant she needed:

“On June 3, at 5am I had my fourth call for a transplant – a call I was losing hope of getting. I was an inpatient at my cystic fibrosis centre at the time, feeling pretty ill. I listened to the coordinator tell me that they had good news – there was a pair of lungs that had become available for me.

“I just hoped this wasn’t another false alarm, as it was so hard picking myself up and plodding on after having that glimpse of a new life three times previously. But this call felt different and I had a feeling that it would go ahead. And it did.

“I spent a total of five-and-a-half weeks in hospital following my surgery, with most of that spent in critical care as I suffered with various complications. But I fought through the worst and I am now recovering well.

“I still have a long way to go but perhaps it’s enough that I can say I have a long way to go. In the darkest days before my transplant, I had to fight just to keep believing that. I know that too many young lives will be cut short before they can breathe new life like I have.

“I no longer require the oxygen that I was on for 18 months prior to transplant or hours of treatment including physiotherapy. I can walk independently, shower independently and can make spontaneous plans with friends and family, most of the time – something that was impossible before.

“I believe that the change to the law on organ donation gives more choice to individuals as you can opt in, out or do nothing and have deemed consent for donation. It will empower people to decide what they want to happen after their death, taking the pressure off their loved ones at such a terrible time. It is the kindest and greatest gift you can give once you have gone.

“I feel very proud that Wales is leading the way on such an important law and hope that the rest of the UK follow suit in the not too distant future.”

Health and Social Services Minister Mark Drakeford said:

“With just one month to go until the organ donation law changes, it’s very important everyone is aware of the changes to the law and what their organ donation choices will be.

“Organ donation saves lives and Kayleigh is one example of this. I hope this new law will help save many more lives.

“The It’s Time to Choose campaign encourages people to have a conversation about organ donation with their family and loved ones and I hope people will continue talking about their organ donation decisions.”

From December 1, your choices will be:

If you want to be a donor you can:

  • Register a decision to become an organ donor (opt in) or
  • Choose to do nothing and have your consent deemed. By doing nothing you are regarded as having no objection to becoming an organ donor.

If you do not want to be a donor you can:

  • Register a decision not to be a donor (opt out).

If you register a decision to become an organ donor, you will be able to choose to donate all your organs and tissues or select the specific organs or tissues you wish to donate.

Many families refuse organ donation if they do not know what their loved one wanted. Whatever your organ donation decision is, make time to talk with your loved ones.