Opt-out: It’s time for Scots to talk about organ donation

Scotland already has the highest number of people on the organ donor register in the UK.

By Julie Currie
Friday, 21st June 2019, 7:55 pm
Just hours before the Bill was passed, Public Health Minister Joe FitzPatrick met two organ recipients at the Royal Infirmary of Edinburgh, Clare Blake and Jamie McGregor. (Pic: Gareth Easton)
Just hours before the Bill was passed, Public Health Minister Joe FitzPatrick met two organ recipients at the Royal Infirmary of Edinburgh, Clare Blake and Jamie McGregor. (Pic: Gareth Easton)

However, with only one per cent of people able to become donors, and more than 550 people currently waiting for an organ, it’s clear more still needs to be done.

So MSPs overwhelmingly agreed last week – 116 for, three against and two abstentions – to introduce a new opt-out system.

Under the new law, if an adult does not opt-in or opt-out of donation they may be deemed to have authorised donation for transplantation.

This is subject to safeguards in the Bill to ensure that donation will not go ahead where it would be against the person’s wishes.

For Public Health Minister Joe FitzPatrick, the Bill’s passing was the end of a year-long campaign.

So it was an emotional moment for him, not least because earlier that day he had met two organ recipients at the Royal Infirmary of Edinburgh whose lives had been transformed thanks to donors – Clare Blake and Jamie McGregor.

Joe said: “Speaking to Clare and Jamie really brought home exactly why we are doing this.

“Hearing their stories and how their lives were transformed through the incredible gift of organ donation was really inspiring and they are both really inspiring people.

“Around 52 per cent of people in Scotland are on the organ donation list but, to put that into context, only one per cent of people die in circumstances where their organs can be used.

“That’s why it’s so important to look at all of the packages we have in place to support organ donation – opt-out is one part of the process to improve patient transplant rates.

“Having spoken directly to people who have benefited from transplants and to others who are waiting on the transplant list, I know the huge difference organ donation can and does make.

“One of the things Jamie and Claire reminded me of is that when someone donates their organs, they can save up to eight different people.

“That’s pretty remarkable when you consider how life-changing it is.

“So I was very emotional, as well as delighted, when the Bill was passed.

“I was also pleased that it received such a significant majority of votes in the Parliament as it shows that there is confidence in the system proposed.”

But there’s much work to be done before the new opt-out system is introduced, not least learning lessons from Wales where the system was first introduced in 2013.

Joe explained: “In Wales initially there was a slight decrease in donations and that’s a real lesson for us here in Scotland to make sure that, when we introduce the opt-out system, people know what it means.

“We need to learn that lesson from Wales and that’s why awareness-raising is so important.

“One of the other lessons we learned from Wales is that we need to introduce this at the correct pace.

“Organ donation in Scotland is highly respected and well supported. So it’s more important that we get it right than rush it through.

“It’s been absolutely crucial to work with the transplant community to co-design the opt-out system as they are the people who will take this forward.

“It’s really important we understand how the legislation will work in the real world when they come to put it into practice.

“There are still a number of pieces of legislation – how the Bill will work in practice – to go through Parliament.

“We also have to ensure there are systems in place, such as new IT and to make sure staff are professionally trained in the new system.”

One of the other key elements is ensuring the public are well versed in the opt-out system.

While the Bill itself has raised awareness, there will also be a year-long publicity campaign before it is finally introduced.

And in that time, it is hoped families the length and breadth of the country will discuss their wishes with their loved ones.

Joe said: “We want to start raising awareness as soon as we can. Parliament has been clear that people must understand the new law and what it means to them.

“We’ve committed to a 12-month awareness-raising publicity campaign before the implementation.

“But we want to start raising awareness now; the passing of the Bill itself has enabled us to do that.

“The big message during the campaign is that it’s really important for people to have those conversations with their families so that they know what their loved one’s wishes are.

“Enquiries will still be made with families under the new system and those conversations will be easier if families know for sure what the person’s wishes are. So having those conversations with your family is crucial, whether you choose to become an organ donor or to opt-out.

“A loved one donating their organs and potentially saving lives can be a positive outcome for families and often helps with the grieving process. They are, after all, giving the gift of life to people who really need it.

“We have high support for organ donation in Scotland and the highest number in the UK on the organ donation register.

“There was also a high level of support for the opt-out system in Scotland – people think it is the right way forward and many want to help others in the event of their death.

“Crucially, though, we need people to make sure their wishes are known so that they can be respected.”

Ultimately, Joe hopes that simply having those conversations will help people currently waiting for a life-saving organ.

He said: “As the process goes on, there will be more conversations about organ donation – even before opt-out is introduced.

“I’m hopeful that will see more transplants taking place here in Scotland.”

The Human Tissue (Authorisation) (Scotland) Bill was introduced to Parliament on June 8, 2018 and amends the existing Scottish legislation that supports donation by introducing deemed authorisation.

This means that donation may proceed where a person was not known to have any objection to donation.

There will be protections for adults without capacity, those resident in Scotland for less than 12 months and children under 16 who will only be able to donate if they, or someone on their behalf, explicitly authorises it.

Less than one per cent of people die in circumstances that enable organ donation to proceed, as a potential donor usually has to be in an intensive care unit.

However, since 2008 in Scotland there has been an 81 per cent increase in the number of people who donated organs after their death (54 to 98 in 2018/19); a 58 per cent increase in the number of transplants from deceased donors (211 to 333) and a 16 per cent decrease in the number of people on the transplant waiting list (689 to 581 in March 2019).

Joe added: “The opt-out system will add to a package of measures which have led to significant increases in donation and transplantation in Scotland over the last decade.

“However, there are more than 500 people waiting for an organ transplant at any one time in Scotland. It’s important that we do all we can to improve their lives.”

To find out more, visit organdonationscotland.org.