Organ and Tissue Donation Week – The NEN

Scots know if their loved ones prefer ketchup over brown sauce – but not their organ donation decision

New Scottish Government campaign encourages people to make their own organ and tissue donation decision and ‘Have the Chat’ with those close to them
Organ and Tissue Donation Week runs from 23rd-29th September, with 2024 marking 30 life-saving years of the NHS Organ Donor Register
Campaign reminds people of the choices they have under Scotland’s opt out system of organ and tissue donation

The Scottish Government has launched a new campaign to mark Organ and Tissue Donation Week (23rd-29th September 2024), encouraging more people to make a choice about their organ donor decision and, importantly, ‘Have the Chat’ with their loved ones about their choice.

The new ‘Have the Chat’ campaign comes as research[1] reveals that while more people in Scotland know if their family and friends prefer tomato or brown sauce – fewer know their organ and tissue donation decision.

When polled, members of the public were more likely to say they knew their loved ones’ coffee order or whether they’re a dog or a cat person, rather than if they’d want to donate their organs and tissue.

Findings also revealed that while more than three quarters (77%) of respondents know their loved ones religious or spiritual beliefs, only half (51%) are aware of their organ and tissue donation decision.

To launch the campaign, former Miss Scotland and radio presenter, Keryn Matthew took to the streets of the capital to encourage members of the public to ‘Have the Chat’ with their own family and friends.

This year also marks the 30th anniversary of the NHS Organ Donor Register and celebrates the thousands of lives that have been saved thanks to people agreeing to the gift of organ donation. With many still awaiting transplants, it remains vital for people to confirm their organ and tissue donation decision.

Under Scotland’s opt out system of organ and tissue donation, Organ and Tissue Donation Week serves as a reminder for people to make their choices known and not leave their loved ones in doubt.

Nobody understands the importance of the gift of donation more than 29-year-old Martin Dillet, who underwent four liver transplants before the age of 30. The father of two has shared his story to highlight the life-saving impact it had for him.

Martin said: “I was diagnosed with a rare liver disease as a baby and had my first transplant at just three years old. Things went back to normal after that – I had a great childhood and went on to meet my wife, Danielle in 2012 before welcoming our first daughter in 2021.

“I always thought of my donor over the years. It wasn’t a conscious thought process – more a constant sense of being grateful for a second chance a life. However, in 2023, my health started to deteriorate rapidly and doctors discovered that the liver that had kept me alive for 25 years was failing.

“Things moved pretty quickly after that and I ended up going into full liver failure and was placed back on the transplant list at the same time as we were preparing for the birth of our second child. What should have been one of our happiest times as a family became one of the most anxious as we waited to hear that a liver had become available.

“Thankfully, we received a phone call and I received my transplant in September 2023. Everything went well with the operation, but unfortunately by the next day it became clear that my new liver wasn’t working. It’s an extremely rare complication and the only option was for me to go back on the list.

“We got the news that a new liver was available and I went back into surgery. This time it became immediately clear that the new liver wasn’t working properly. Doctors made the difficult decision to remove my liver entirely and I was added to the transplant list for a fourth time.

“We were nearly out of hope, but after 36 hours with no liver, I received my third liver transplant all within the space of five days.

“This time, everything went well and after being in a coma for 18 days I finally woke up and was reunited with my family. Danielle and I are so sincerely thankful to all my donors and their families.

“It’s so unfortunate that two of my transplants didn’t take, but it doesn’t change what my donors did for me and there are no words to describe how much it means to us.

“They gave me a chance to be here for my girls, Georgia and Amber, to see them both grow up.”

People in Scotland can choose to be a donor, or to opt out. If people aged 16 and over choose to do nothing, it may be assumed that they agree to be a donor if they die in circumstances where donation is possible, unless they are in a group for whom the opt out system does not apply or it would be against their views.

Data shows that 90% of families would support organ and tissue donation if their loved one had confirmed their decision on the NHS Organ Donor Register[4]; however, over two in five (43%) are yet to register their choice[5].

James Powell, Associate Medical Director, Surgical Services, Royal Infirmary of Edinburgh and Consultant Transplant Surgeon, NHS Lothian, said: “Martin’s story is incredibly inspiring and we wish him and his family all the very best.

“If you participate in any part of transplantation, you know that every transplant takes a full team including doctors, nurses, allied health professionals, donor services and family members, all working together.

“Most important though is the generosity of organ donors who have given the ultimate gift of life. With their gift, and the support of family members in achieving their loved one’s wishes, the Scottish Liver Transplant Unit has been able to help many patients.”

The NHS Organ Donor Register was set up to promote organ donation and allow people to record their decision to donate.

It was the result of a five-year campaign by John Cox and his daughter Christine after their son and brother, Peter, died in 1989. He had asked for his organs to be used to help others.

To find out more and register your decision, visit the NHS Organ Donor Register at www.organdonation.scot.

Heartbroken mum’s plea: Discuss organ donation with loved ones

A mother who made the brave decision to save the lives of three other people and give another the gift of sight has urged more people to discuss organ donation with their families.

Debbie Young, 53, from Edinburgh, made the courageous decision to donate her daughter’s organs when she died two years ago.

Her daughter, Raechel Waterston was just six days away from her 21^st birthday when she suffered a fatal seizure.

Debbie’s decision in the moments that followed saved and transformed the lives of four other people.

Now, as part of Organ and Tissue Donation Week, Debbie is encouraging others to decide which organs they would donate and speak to their loved ones about their decision.

Debbie, a support worker and mum of four, said: “I wish Raechel was here beside me every single day, but it’s a comfort that I could honour her love of helping others even at the end of her life.

“Raechel had learning difficulties and autism and she was sunshine in human form and she thought everyone was her best friend. She loved bowling, films, wearing costumes and interpretative dance. If everyone was like my daughter, the world would be an amazing place.”

Raechel was rushed to the Royal Infirmary of Edinburgh Hospital after the seizure, but the medical teams confirmed that there was no brain activity.

Despite facing the overwhelming loss of her daughter, Debbie bravely asked doctors whether Raechel could become an organ donor.

The specialist nurses in organ donation supported Raechel and her family while transplant teams scanned patient waiting lists across the country to find matching recipients and located three patients who were in desperate need of a transplant.

Raechel’s heart and kidneys saved three people’s lives and her eyes were given to another to help restore their sight. Her lungs were also donated to medical research.

Debbie said: “Raechel would usually sit on my bed while I was getting ready for work. She hadn’t come in which was unusual, so I went into her room and she was lying on the ground unresponsive and her lips and fingers had a blue tinge to them.

“Her favourite film character was Wednesday Addams, so my family and I chose to say goodbye to her on Wednesday at 10pm which was her bedtime. We wished her goodnight and told her we loved her like we usually did. I was the last one to leave the room and it was the hardest thing I ever had to do – to walk away while she was still breathing.”

Two years on, Debbie is still struggling to come to terms with the death of her daughter, but recently wrote a letter to all of Raechel’s organ recipients.

Debbie said: “I wrote a letter to tell them a little about my daughter and I warned them that they might start liking High School Musical because she was obsessed with it! I’ve heard from one recipient, and it’s been such a relief knowing that Raechel saved someone’s life.”

Debbie is urging others to consider what organs they would be happy to donate and to ensure that this decision is recorded on the organ donor register and shared with their family.

“I would really encourage everyone to register their organ donor selections online and to speak to their loved ones about this decision. If your death can help someone else to live, why wouldn’t you want to do that?

“My daughter’s life wasn’t a waste because she saved so many others and I think that’s an incredible feat.”

An NHS Lothian spokesperson said:“It is hugely important that people make the decision to sign up to the organ donor register and then discuss it with their families. Debbie knew right away that her daughter would want to make a difference in her death, just as she had throughout her whole life.

“Although Scotland now has an opt-out policy, it’s still really important to outline what organs you would be happy to donate on the organ donor register. You could help up to nine people if you decide to donate all your organs but having those conversations with your family is crucial.”

For details about organ donation, visit organdonationscotland.org

Edinburgh marks Organ and Tissue Donation Week 2023

EDINBURGH is gearing up to celebrate Organ and Tissue Donation Week 2023 which runs from September 18-24.

This annual campaign is all about raising awareness for the ongoing need for organ donation, encouraging people to make a decision about whether they wish to opt in or out of donation, and making sure these wishes are discussed with family members.

Here in the Capital, in line with the UK wide campaign, we are hoping to light up the City Chambers in pink to show our support. Our colleagues at the Edinburgh International Conference Centre (EICC), will also be lighting up their building on Morrison Street.

We are also running an external social media campaign in consultation with the Scottish Government’s national campaign and the local work of NHS Lothian.

Yesterday (September 17) the ‘Transplant Tour’ began in Edinburgh. This is a charity cycle travelling down the UK to raise funds and awareness for the charity Give a Kidney. It will stop at Newcastle, Leeds, Sheffield, Manchester, Birmingham, and finish in Oxford. We have provided an official letter of support from the Lord Provost to the organisers and are supporting them and the charity with promotion.

On Friday (September 22), some Race for Recipients participants will set off from Murrayfield in Edinburgh and finish at the Kelpies in Falkirk.

The race is taking place across the country, with individuals and teams racking up the kilometres through walking, wheeling, running, swimming, and other ways, to raise awareness of the importance of making a donation decision and to recognise those whose lives have been touched by organ and tissue donation.

Depute Lord Provost Lezley Marion Cameron will be at Murrayfield to meet them and wish them well as they depart. Currently there are over 800 participants registered for the Race across Scotland.

Council Leader Cammy Day said: “As we celebrate Organ and Tissue Donation Week 2023, we must be mindful of the fact that more than 7,000 people in the UK are currently waiting for a life-saving transplant.

“Only around one per cent of people die in a way that makes organ donation possible, which means every donation opportunity is precious. There are thousands of people who could be given a new lease of life by a donor, however in order to help as many people as possible we all need to play our part by registering our decisions to be a donor or opt out.

“These are conversations that need to be had amongst families, friends, colleagues, and communities as we go forward. We know that families are more likely to support donation when they already know it was what their loved one wanted.

“I’m encouraged by the fact that over half of people in Scotland have now registered their organ and tissue donation decision however there is still a lot of work to be done. Whatever your choice may be, the important thing is to make it and discuss it. I would urge anyone who is 16 or over and yet to join me and many others who have recorded their decision by visiting the official website.

“Another great way to get involved is the Race for Recipients challenge. Our Depute Lord Provost Lezley Marion Cameron will be meeting some of the participants on Friday (September 22) as they head off cycling towards the Kelpies in Falkirk. Find out more and join online at their website.

“I’m proud of everything that we’re doing to mark this important week here in Edinburgh. From lighting up buildings around the city, to supporting our colleagues in government and the NHS, to lending a hand to fundraisers I’m sure this will be a week to remember.”

Record your organ and tissue donation decision

This Organ and Tissue Donation Week marks six months since Scotland moved to an opt out system of organ and tissue donation.

New figures show over half of people (54%) in Scotland have now registered their donation decision – 51.5% to be a donor and 2.8% choosing to opt out.

The opt out system was introduced on 26 March to save and improve lives. If people aged 16 and over haven’t opted out of donation, they will be considered a possible donor if they die in circumstances in which they could donate.

Under the opt out system everyone has a choice – to be a donor, or opt out of donation – but it’s important to make that decision known.

In Scotland, there are an average of around 500 people currently waiting on an organ transplant, however only around one per cent of people die in a way that makes organ donation possible.

Public Health Minister Maree Todd said: “Over half of adults have now recorded their donation decision – the highest percentage in the UK.

“Donation remains a personal decision and everyone has a choice. We are committed to continuing to raise awareness of the choices people have under the opt out system and the importance of making their donation decision known.

“I would encourage people to make a decision about donation, record their decision on the NHS Organ Donor Register and tell their family and friends, so they know what you would want to happen.

“We have made tremendous progress in increasing donation and transplantation in Scotland over the last decade, with the move to opt out part of a package of measures to reduce the number of people in Scotland waiting for a transplant at any one time.”

You can record your donation decision or change your decision at any time.

To record a donation decision go online at www.organdonationscotland.org or call 0300 123 23 23.