Organ and tissue donation law change

Throughout February all households will a receive a leaflet explaining the change in the law around organ and tissue donation in Scotland.

From 26 March 2021 the law will change to an opt out system.

This means that most adults who die in circumstances where they are able to donate will be considered as having agreed to be a donor unless they record a decision not to – what’s known as ‘opt out’.

People will still have a choice. If you don’t want to be a donor you can choose to opt out on the NHS Organ Donor Register at any time, before or after the law changes.

If you support donation, you can still choose to actively record your decision to be a donor on the NHS Organ Donor Register. You can also choose which organs or tissue you would want to donate on the register.

The leaflet contains detailed information about law change and it clearly explains the choices people have. Everyone aged 16 or over in the household should read it in order to understand why it’s important to make their donation decision, record it and share it with family and friends.

The new law will add to the package of measures already in place which have led to significant increases in donation and transplantation over the last decade.

Public Health Minister Mairi Gougeon said:

“In Scotland there are an average of more than 500 people waiting for an organ transplant at any one time. The law is changing to help save and improve more of the lives of those on the waiting list. 

“Only 1% of people die in circumstances where they might become an organ donor. This means every opportunity for donation is very precious.

“We want everyone in Scotland to understand what this change means for them and to have the right information so that they can make their choice and I would urge all members of the household aged 16 or over to take the time to read the leaflet. Donation remains a personal decision and we’re encouraging people to make the choice that’s right for them – whether that’s to be a donor or not.

“Under the opt out system, families of potential donors will always be consulted to check what their loved one’s latest views on donation were. So, whatever you decide, as well as recording it on the NHS Organ Donor Register you should also tell those close to you about your donation decision to help ensure that it is honoured.” 

Background

The Human Tissue (Authorisation) (Scotland) Act 2019 was passed in July 2019 and will come into effect on 26 March 2021.

The 2019 Act amends the existing Human Tissue (Scotland) Act 2006 by introducing a new, additional authorisation called ‘deemed authorisation’. This means that donation may proceed where adults over the age of 16 were not known to have any objection to donation.

It will include protections for certain groups who will not be subject to deemed authorisation and will only be able to donate if they, or someone on their behalf, explicitly authorises it:

• adults without capacity to understand deemed authorisation and take the necessary action,
• adults resident in Scotland for less than 12 months before their death
• children under 16

People can record whether their faith or beliefs are important to them on the NHS Organ Donor Register. This will then be considered as part of the sensitive donation discussion which takes place with their  family.

The household leaflet will be distributed to households over a four week period, commencing 1 February.  The leaflet will translated into over 20 different languages and also Easy Read, British Sign Language, Large Print and audio versions, to help ensure we reach as many different communities as possible.

To record a donation decision or find out more about the opt out system of organ and tissue donation and your choices, go online at www.organdonationscotland.org or call 0300 303 2094.

Transplant case study

Luke Ripley, an Aeronautical Engineer in the Royal Air Force, was suddenly rushed into hospital just three days before his 39^th birthday to discover he had just days to live without any medical intervention.

Luke, now 40, based in Glenrothes, was quickly diagnosed with dilated cardiomyopathy in June 2019 after being hospitalised with flu-like symptoms, and transferred to the Golden Jubilee National Hospital for urgent treatment. He was placed on an intra-aortic balloon pump machine, which kept him alive while he waited for a life-saving transplant.

Luke said: “I’d been experiencing flu-like symptoms for five weeks before I was admitted to hospital, but up until that point had been leading a normal, healthy life. After being rushed into hospital, I was shocked to be diagnosed with dilated cardiomyopathy. I’d never had any symptoms at all – and after 23 years in the military I thought I was reasonably fit and healthy.

“Instead I learnt that my heart had failed repeatedly and the only treatment was to be placed on an intra-aortic balloon pump machine until they could identify a suitable heart to transplant. I couldn’t leave hospital without receiving a transplant, as I relied on the balloon pump to keep me alive.

“Due to a rare blood type and my height, I was told that I was looking at eight or nine months on the waiting list.

“Whilst waiting for the call, my balloon pump failed resulting in me needing a difficult emergency surgery. At this point I was so convinced my time had come that I recorded a final message on my phone for my wife to listen to in case the worst happened, and spoke to some friends to prepare them.”

Fortunately the emergency surgery succeeded, and after a false alarm, Luke received the life-changing news that a donor heart had been found in September 2019, just three months after he was added to the waiting list.

He said: “I just so happened to be awake at 4am when the transplant coordinator passed my room to see the light on, and came in to share the news that a match had been found. It was a surreal moment when my surgeon bounced into my room a couple of hours later to tell me this was a perfect match in every way for me.

“I’ve been told that as soon as they reattached the heart it was beating so strongly, and it didn’t require any outside assistance. Astonishingly I was off the ventilator the day after the transplant, able to get out of bed the following day, and only 12 days later I was home. It was actually quite frightening to have no assistance after spending so long reliant on care in hospital.”

Talking about the life-changing impact of the transplant, Luke said: “The most important thing is that I’m alive today, and that’s thanks to my donor. I’m sad that someone else had to die for me to live, and I think about that every day. Both my wife and I wrote letters to the family of my donor but I can’t put into words how valuable that gift is, and I want to make sure I make the most of that gift every day.

“If I hadn’t gone to hospital that day I was told I would’ve died. I’m never going to be the person I was before, I’m very lucky to have received a transplant, and since the surgery I am thankful every day.

Speaking about the law change to an opt out system from 26 March 2021, Luke said:

“I’m glad to hear the law is changing, in my opinion it’s always needed to be an opt out system. I have always been registered as a donor, and I have since used my experience to raise awareness particularly within the forces. Everyone in my unit has now signed up to be a donor, as they realise this can happen to anyone at any time.

“It’s important to respect that everyone has a choice, but I would urge everyone to look at the impact organ and tissue donation can have on people’s lives.”