The last day of Organ Donation Week 2024.

We hope you’ve found something that caught attention in this week’s variety of campaigning and publicity.  If these blogs have been part of it for you then…thank you.

We know blogs like these are only a foot in the door, starters for the much bigger meal that could be made of organ donation and its breadth of related stories.  If you are willing to walk in through the door a little further, then here’s a way…  It’s a book and, for a few more weeks only, an abridged version read by its author is available on BBC iPlayer.  It was the Book of the Week earlier this month.

The Story of a Heart, by Dr Rachel Clarke, was published on 3rd September 2024.  The writer opens her prologue simply, “This is the tale of a boy, a girl, and the heart they share.”  ‘Simply’ could hardly be a more inappropriate word for what follows, and her second sentance foreshadows all, “It is a story that no one was meant to tell.”  Not secret, but not what we want our lives to include.

The book, using four years of sensitive interviews and research, and the writer’s own extensive bank of experience as a palliative care doctor, health service campaigner and accomplished writer, opens a window onto the vast world of organ donation and transplantation through the stories of Keira Ball and Max Johnson. With detailed back stories of medical research, technology and systems development that make transplants possible, the writer never strays far from those profoundly human stories she announces in her first sentence.

This is not, nor did it intend to be, a definitive book on organ donation, nor even on one story. There is always more that could be said, or will remain unsaid, intimate, even some (probably very little) already forgotten, overtaken by immediate demands. But in the breadth and depth of its content and the compassionate insight and vulnerable, honest humanity of those Rachel has spoken with as she threaded the pearls of this story together, it is as revealing and inspiring a doorway to the subject as could fit between the covers of an accessibly sized book, and grace anyone’s reading list.

This is not a book review.  This reader hasn’t yet reached the last page. Good books are in dialogue with their readers, some will pull them quickly to the last page, racing to find out what happens. This time, we already know the conclusions. It’s the details of the journey that captivate and enthrall. The skill of the writer’s craft may give reason to pause and look twice at the scenery or, as in this reader’s case, it may trigger images, revisiting other experiences, giving reason to do more than pause, and catch breath.

For some, it will provide a skilful invitation to imagine a situation they’ve never been in, and hope never to experience, a journey of empathy resourced with accuracy and compassion.

Others may be plunged back into their own experiences of hospital corridors, and small, busy rooms of machines and bleeps, their whole being aching to do more than seems humanly possible for the one they love, now in a hospital gown, sedated, attached by wires and tubes to the mechanics of life-giving care.

These pages could take both type of reader into hard places.  A word used, overused, even dreaded, is still one of the first words we reach for to describe the journey – rollercoaster.  But a rollercoaster as far removed from the fairground fun as it could be.  No one needs this kind of adrenilin rush.

Never flinching from detail, there is some respite when Rachel turns her forensic lens onto the  background of research, innovation and courageous practice driven usually, not by detached, scientific curiosity but by deep desire to address immediate human need, often arising from direct exposure to personal catastrophe.

This respite scarcely allows time to draw breath before it will, in turn, return us to one of the two Pediatric Intensive Care Units and the extraordinarily focused details of the skill and resources, of love, applied to these two precious children and their families, linked by the story of a single heart.

Organ Donation Week closes tonight.  We know its importance continues, on one side for the thousands on the waiting list and, on the other, for those who will be plunged into sudden trauma, and a choice to consent, or not, to donation.

If you do find opportunity to listen to, or read, The Story of a Heart,  you will have still more reason to have those conversations about organ donation…

Thank you for reading this far.  Now, back to the next pages of Rachel’s book…

Organ Donation Week is almost over – one day to go.  It’s been a busy week for many.  The logistics of the week’s awareness raising was complex, much done in the months and weeks beforehand, much of it hidden from public view.  Sorting the funds necessary for some of it.  And the permissions, the lighting, the theatre gels and coloured bulbs that had to be in place to light up public buildings and monuments and natural features across the country in the pink of the organ donor card.

Arranging the press coverage to get the maximum reach for the stories. Lining up the interviews for the media, local and national.  Inviting and encouraging individuals and groups to consider participation in the events, to sign up in advance, get to the football pitch for the drone picture on a set day and time, wear something pink, bring a photo, a banner.

Gathering all the personal stories to be posted on social media by the growing number of organ donation charities and campaigning groups, by medical teams working daily with donors, recipients and their relatives, and by families and individuals whose lives have been shaped by organ donation.  Some telling us why they decided to give their consent for organ donation when a loved one died, and the grace it is for them in the grief they carry. Others who received that gift, and the thousands of everyday differences it has made, being able to start their lives again.  Each one motivated by gratitude and kindness, wanting to make a difference for someone else.

Yesterday, in a range of weathers (depending on time of day as much as location), hundreds of people took to the hills, ascending six of our highest peaks; Ben Nevis in Scotland, Scafell in England,  Slieve Donard in Northern Ireland, Snaefell on the Isle of Man, Yr Wyddfa/Snowdon in North Wales and Pen y Fan in South Wales.

Most walked, some managed to get a train! The Snowdon railway played it’s part in getting some of those pink wooly-hatted participants to the top where they were tunefully entertained by a Welsh Choir.

We are proud to say Live Loudly Donate Proudly made it to the top of Slieve Donard, and in great company.

Rachel Quinney Mee and Rachel Chambers (Photo: Stephen Glover – thanks!)

After a decent night’s sleep, Rachel talked about the day on Slieve Donard.

“The first person to arrive at the site – 7.30am! – was Catherine McKeown, the Organ Donation promotions manager for the NI Public Health Agency. Catherine was on the go all day, organising, managing publicity and making sure we all had our pink beanies and snoods, and a few flags and banners. 

It was great to be with such a mixed group of people – ICU nurses, donor families, transplant recipients, students, and enthusiastic supporters – even the Pink Panther! – keeping each other going on the climb up the mountain.  It was a steep climb, but it felt a lot easier as we were in such good company and distracted by each others stories. 

 On the way back down, we knew that everyone was going back to our different places to keep the conversations going about organ donations.  We have all been involved with it from different angles, so it’s personal, and we know how important it is, as Lucia said, to Live Loudly and Donate Proudly.”

           

There is also a great collection of photos from all the climbs on the Donor Family Network’s Facebook page.

So, is that the peak for this week’s campaign?  The summit?

Spectacular though it has all been, the real peak benefit of this week won’t be on camera.  It will be far from the creativity, energy and enjoyment of public campaigning, in a small family room of an intensive care unit, in a conversation with shell-shocked relatives as they hear the irreversible news that someone they love will not be going home with them again.  In the sensitive minutes that follow, they may learn that the one they now grieve is able to be an organ donor.  Do they know what their loved one would want to happen?  Are they able to honour that decision, whatever it may be?

Somewhere else, someone is waiting for a phone call, and the chance to live.  Perhaps, next year, they will be able to participate with their friends in organ donation week.  Climb a mountain with gifted lungs, a gifted heart, a gifted life…  That’s an achievement to celebrate, and it should be on camera.

Have you had a conversation about organ donation?  Could you have another?  Please…

 

There’s a fun, interactive map online this week.  It’s called Lighting Up Pink 2024, and it shows the locations of buildings, monuments and landmarks all across the UK that are being bathed in pink light to draw attention to this week’s campaign for organ donation.  Is there one near you?  Check the map on the website – Organ Donation Week 2024

Why pink?  Simple.  Pink is the colour of the organ donation card.

The more pink there is around, the easier it is to see the support for organ donation around the country. It’s a colourful invitation, a reminder, encouraging people to consider registering their decision about being a donor.

There seem to be about 170 places on the list so far, including theatres, bridges, hospitals, museums, Council offices, Town and City Halls, monuments, natural features, and more.  Last year, even the Kelpies, outside Falkirk, Scotland, 300 tonne, 100-foot tall steel sculptures of horses heads, the largest equine sculptures in the world, were bathed in pink light as part of the week’s campaign.  (Are the Kelpies in the pink again this year?)

Check the map, or your local media, and go sightseeing (in weather appropriate clothing!).  If you do find a ‘pinked-up location’ near you, you are invited to take a selfie with it and share it on your social media platform, using the tag ‘@nhsorgandonor’.

It might be a bit late to encourage those in charge of civic buildings and monuments near you to add pink lights this year – but why not look around and see who could be persuaded to join in for Organ Donation Week 2025?  Is there an iconic site near you that could carry a message that might save lives?  The Organ Donation Week website even carries a template invitation letter you can modify to suit your location and send to those who can make it happen.  Of course, if you’ve already got outside lights at your house you don’t even have to send a letter…

The most important thing you can do is to register your decision about being a donor, or not, and that can take just a couple of minutes – here’s a LINK . Whatever your decision, please remember to talk to your loved ones.  It could be a great help to them if they ever have to answer for you.

Meanwhile, do what you can to stay in the pink…

Daithi Mac Gabhann, almost 8 years of age, was awarded the Freedom of the City of Belfast in June 2023, in honour of his family’s campaigning on organ donation.  Daithi has been on the Transplant Waiting List since 2018, waiting for a new heart. Belfast City Hall will be dressed in pink again this week… 

 

This week, there’s a big race going on.  All over the UK.

People in 12 regions across Scotland, Wales, Northern Ireland and England are signing up on line, as individuals or joining teams, to log up some miles (or kilometres – they’re shorter) over Organ Donation Week.  A bit more than the week, actually, to include two weekends.  It started on Saturday 21st September and all kilometres completed must be logged online by midnight on Sunday 29th September.

The Race for Recipients.  The big idea for the week is to lift the profile of organ donation a little (or a lot) by doing some physical activity.  Then we win twice, because we know physical activity is a Good Thing To Do.

We are invited to run if we choose, or walk, swim, cycle, row, climb or…whatever form of physically activity we prefer, beyond our normal day to day activity.  Steps between the classrooms, round the office, in and about the house don’t count.  The idea is to encourage us to, well, go an extra mile.  Or two.

You don’t have to be fit, you don’t have to achieve colossal distances or set new speed records.  If you do join in, even just for a brief activity, you are invited to take photos and share your involvement on any or all social media platforms you use, and encourage others to give a little time to think of people for whom organ donation is not only a cause, but a lifeline.

There are some target distances to aim for, as individuals or teams.  9kms representing the number of lives that can be saved by one organ donor.  7,500 kms to represent the number of people currently waiting for a life-saving transplant.  250kms for the number of children on the transplant waiting list.  61,400 kms to represent the number of people living today with an organ transplant.  Whatever distance you may travel, one prize target is to encourage 9 people to talk with their families and friends about their own choices around donation, and even to spend a few more minutes and sign the Register.

You can still sign up for this week’s race, as an individual, join a team, or even start your own.  Some teams are made up of people who know each other.  Some include people who sign up and choose a team they don’t know but wish to support.  The world of organ donation is familiar with the kindness of strangers…

Ready?  Steady?  Go have a look and see what you think…Race for Recipients

 

 

The NHS Organ Donor Register is a confidential record of people’s choices whether to be considered a potential organ donor, or not, when they die.

The UK Transplant Waiting List is a similarly confidential database of everyone in the UK currently waiting for the opportunity to receive an organ from a deceased donor.  There are about 7,730 people on the active waiting list at this moment, almost 260 children, although the list is dynamic, changing rapidly according to individual circumstances.

It’s not a simple queue, where the first person in line receives the next available organ they need.  It is a complex matching system, using many factors to decide which person on the list has the maximum opportunity for a succesful transplant, which new host will provide the best opportunity for longevity for the precious gift of the donated organ.

Blood and tissue type must be compatible, size and age of donor and potential recipient will be considered, even how far the organ will have to be transported and how long it will be before it can be safely transplanted and become a life-giving part of another person.

When a patient is considered to be in need of a transplant, they are carefully assessed to see if they are strong enough, physically and mentally, to go through the demands of the operation and recovery.  If the wait is too long, health can deteriorate too much and the patient be considered too unwell to endure the process.  Last year over 415 people died while waiting for a transplant.

That’s some of the facts.  The real lives and emotions are another thing.  For the purpose of sensitive, accurate matching the list is anonymous.  Those who wait for the phone call are not.

Harry is our friend.

We met him with his mum and dad, Clare and Simon, and Harry’s brother, Sam, at the Transplant Games.  Today, their bags are packed again, and they watch the clock as health weakens, daring to hope that the light of kindness can shine from the darkest hours of others.

We are grateful for permission to share Harry’s story, in Clare’s own words:

“This is Harry.

He is thirteen and a half years old and became a bit of a celebrity when he ran laps of the BBC Breakfast sofa aged 4.

Harry was born with the liver disease Biliary Atresia, which led to him needing a transplant just before his 1st birthday. Harry then needed another transplant (donated from dad Simon as a living donor) when he was 4.

               

Since then, Harry has been unstoppable. He has summited Cadair Idris, Ben Nevis & Snowdon. He has won many medals at The British Transplant Games as part of the Birmingham Children’s Hospital and Charity team. Harry loves cycling, swimming, Minecraft and Lego.

But then he became poorly. This year has not been kind. Harry has spent around 18 weeks in hospital and now needs a 3rd transplant. Live donation is not an option. So the bags are packed and we await the call. We know that he will not get better without a new liver.

Although everyone is now a potential donor, the final decision is made by Next of Kin. Many say no.

More lives could be saved by people sharing their wishes. Sign up to the register and tell your loved ones. Thank you…”

In the world of organ donation we never seem to be far from an anniversary.

This year the UK’s Organ Donor Register marks the 30th anniversary of its launch.  That really doesn’t seem very long for something we now take for granted, but it wasn’t always there.

Peter Cox was  24 years old when he died due to a brain tumour.

“He was a great rugby player, he didn’t smoke,” his mother, Rosemary, said in an interview for Channel 5 News (2018).   “He was the life and soul of the party, and suddenly he couldn’t remember things and we found out that he had a brain tumour, an astocytoma.  We heard it in January (1989) and he died in the November. We tried very hard but unfortunately there was no cure.  So he went, eventually, into intensive care at Warwick Hospital and while he was in there he told us that he wished to give his organs for transplant and so we set about carrying out his wishes.”

Christine, Peter’s sister, told the news team, “We explained to the medical team that he wished to give his organs and because he had a brain illness, everything else was perfect within his body.  So I think everything was used apart from his lungs, and up to 17 people benefitted from him giving everything it was possible to give.  It certainly made it a lot easier for my family to know that his death had not been in vain and that others benefitted from it.”

“Peter’s heart went to a grandfather in Newcastle-upon-Tyne,” Rosemary added, “and he was able to live for many years and enjoy his grandchildren so, we didn’t have our miracle, but he did.”

When Peter’s family discovered there wasn’t a national system to help fulfil Peter’s wish, Rosemary, Christine, and Peter’s dad, John, began a campaign to set up a UK-wide database for willing donors.

“Having lost Peter, it was the worst thing that could possibly happen to our family, we were very close, and we wanted to stop other people losing loved ones just because of the shortage of organs.”

Five years later, the National Organ Donor Register was launched.

My brother Peter achieved an unimaginable amount of good by expressing his support for organ donation, and making his decision known to us as a family,” says Christine.

From here, Happy Anniversary, National Organ Donor Register.  Thank you for 30 years, thousands of wishes honoured and more than 100,000 lives saved and transformed.  Thank you John, Rosemary and Christine. And thank you Peter, for your kindness that set it in motion…

 

It’s Organ Donation Awareness Week 2024.

Lots of organisations have been preparing campaigns and activities to place organ donation matters in front of us over the next seven days – and, hopefully, beyond.  Charities and campaigns, many created by individuals and families directly affected by organ donation have gathered stories and photographs to post and share across social media. There will be more about some of them in this week’s Live Loudly Donate Proudly blogs.

Hearing about the theme for the week, a friend asked, “What can I do to support it? I’ve been on the donor list for years; what can I do this week?  How can I help?”
“That’s great. Thank you. Do your family know what you think?”
“Don’t think so, why?”
“Because if you’re ever in that rare and tragic situation where a medical team is starting conversations that might lead to some of your own organs being gifted to save the life of somebody else, it’s likely that they will be talking to your family. Even though we are all now presumed to be potential organ donors (with exceptions for age and certain other factors) should we ever be in that place our family’s consent will be vital. What they know about our decisions will matter. And if they are ever in that relative’s room at the side of an Intensive Care Unit, hearing the most awful news, it helps if it isn’t the first time they’ve heard of organ donation. It helps particularly if they know what you would say yourself. Then they may be better equipped to honour your decision and, perhaps, light a candle in someone else’s darkness.  So yes, please talk with them.”

“What else can we do this week?”

Pause when you’re scrolling through your various social media platforms when you see something about organ donation week.  Read it, then share, repost, whatever the platform allows that might spark a thought for someone else.

Write your own post.  A few words.  Do you know someone whose company you have been able to enjoy for more time due to their transplant?  There must be a sentence in there somewhere, maybe a photo, some experience, memory, that wouldn’t be there without that transplant…

Or come away from the keyboard, and the phone screen, and prompt a conversation aloud.  Talk about it to somebody.  Anybody!  “Did you know it’s organ donation awareness week this week?   Have you ever thought about organ donation?  Have you ever had a conversation with your family about it?  Or with your friends?”  You don’t need to be an expert to get it going, and you can always find out more if you look.

You don’t have to dye your hair pink for the week, or floodlight your house appropriately (hundreds of UK buildings and monuments will be lit in pink), or even choose pink when considering your wardrobe choice for the next few days, although many people will.  It could be anything, and probably more creative than many of the ideas above.  Whatever it is, if it opens the door on one conversation it could make an extraordinary difference, one day, somewhere.

Throw a thought in the pool and make a ripple for this year’s organ donation awareness week.  You won’t be on your own…and thank you…