MSPs vote in favour of opt-out organ donation

Hopes new legislation will encourage individuals to make their wishes known & result in more organs being donated

Tuesday 11th June 2019

MSPs today voted in favour of the introduction of an opt-out organ donation system in Scotland.

Scotland has the highest percentage of people on the organ donor register in the UK but the lowest actual rate of organ donation per million people.

First introduced to the Scottish Parliament in June 2018, the Human Tissue (Authorisation) (Scotland) Bill is expected to be voted through by a majority of MSPs, meaning it will become law soon after.

In 2018, 426 patients died in the UK while on the transplant waiting list or within one year of removal from it.

Surveys show 80% of Scots support donation but only 52% have signed up as a potential donor.

Supporters of the bill hope it will bridge the gap between those who wish to donate and the number who actually join the register.

Speaking to two transplant recipients – Clare Blake and Jamie McGregor – they hope the new soft opt-out system will lead to more organs becoming available for those on the transplant list.

Ms Blake says: “I had a liver transplant five years ago after being diagnosed with primary sclerosing cholangitis (PSC) in 2006,” a condition that strips the bile ducts of the liver, causing liver failure.

Yet since the transplant, she has experienced a “complete difference” in her health.

“I feel I have a new lease of life, which is cliché to say, but it really is. You’re given back your sports, your hobbies – you are unable to do anything before. I was just working, sleeping, existing, because it was just so exhausting.

“Associated symptoms like itching are horrendous – you never get a break from it. [With PSC] that’s one of the side-effects, the constant itching because of the bile having to escape through your skin. You can’t sleep, you can get away from it - I was just existing.”

Jamie McGregor developed a virus and over a three-month period went from being well to being in stage five kidney failure.

“It was a very short journey, to the point where I thought it was the flu but that got worse until I was at the point where I physically could not get out of bed because I was so tired.

“By the time I was diagnosed I was in stage five – end stage – renal failure and then for about three and half years I was on dialysis as well as working full-time.”

Time spent planning and travelling to appointments and the actual dialysis itself would take up around 20 hours each week for Mr McGregor, a regime he says can be “very restrictive in the way you have to live your life”.

Given the myriad factors that need to be considered when a transplant takes place, sometimes patients may be told there is a possibility of a suitable organ and so begin preparing for transplantation before test results eliminate the possibility of the procedure going ahead.

“I was one of the lucky ones that everything aligned correctly for,” Mr McGregor explains. “For me I got the phone call one afternoon at four o’clock and was at the hospital at five and was in surgery by eight.

“After the surgery, it’s a completely different life. Being on dialysis, you don’t realise how sick you are because you do dialysis three times a week and you feel okay, not brilliant but you’re okay.

“Then after the transplant you’re suddenly completely new again and things work again…I am a rugby union referee and since having the transplant I’ve been able to go back to that.

“Being able to give back is really important because someone has given me the gift of life more than anything else and it’s great that I can now try to give back.”

Throughout parliamentary discussions in recent months, the importance of individuals discussing their wishes with their families has come to the fore.

The new law commits the Scottish Government to running awareness raising campaigns, particularly to encourage individuals to make their loved ones aware of their wishes to donate so that, should the situation arise, a donation is more likely to take place.

Speaking during the vote in the Scottish Parliament today, Minister for Public Health, Wellbeing & Sport, Joe FitzPatrick, welcomed amendments to the bill from two Labour MSPs that had strengthened the awareness-raising measures contained within it. 

A public awareness campaign would be carried out for "at least" 12 months prior to implementation of the new legislation, in partnership with expert stakeholders, he said.

Clare Blake hopes the publicity surrounding the legislation will make more people communicate their wishes with their loved ones:

“It’s having that conversation with your loved ones that matters and with this Bill coming through, it has opened up the discussion for people to talk about it and have a conversation with their loved ones to say actually I would donate my organs.

“I think it’s more that people haven’t got round to signing up yet and they don’t want to think about it – they don’t want to think about their own mortality but you can make it easier for your family when it comes to that time if that discussion has been had. That’s what I hope will come out of doing this.”

For Jamie McGregor, “It’s not about opting in or opting out – it’s having that conversation with your loved ones and because when your loved ones are being asked by a doctor about whether you wanted to donate, it’s a very stressful and emotional position.

“But if you have already had that conversation and have told them exactly what you wanted to do then that conversation is still hard for them but it’s made easier because they already know your wishes, that you want to give something beyond your death.”

 

While visiting transplant recipients and staff at the Royal Infirmary of Edinburgh today, Joe FitzPatrick, Minister for Public Health, Wellbeing & Sport, tolds healthandcare.scot: “We know people in Scotland are very supportive of organ donation. We know most people are supportive of this Bill and would want their organs to be used, but that doesn’t always happen at the end.

“Firstly, in all of the cases where organs will be used for donation there are tragic circumstances around that and maybe we, as a nation, are not very good at having conversations about death and donation.

“Hopefully part of the process of the Bill will encourage people to have those conversations so families know what their loved one would have wanted – that can make discussions with specialist nurses at very difficult times a bit easier.

“Ultimately we want to see more people receive an organ donation – that’s the shift we need.”

 

Pictured (L to R): Clare Blake; Minister for Public Health, Wellbeing & Sport, Joe FitzPatrick; Jamie McGregor