Shortening the queue for organ transplants…

Full marks this week for the Specialist Nurses for Organ Donation (SNODs) at Addenbrooke’s Hospital, an internationally renowned transplant centre in Cambridge.  They made their mark on the back of the city’s buses.  A clear message, on that bright pink background:  “Waiting in traffic is frustrating…but waiting for a transplant is worse.” 

Waiting behind a bus...Addenbrookes 2022

That transplant list is a complex queue, not like many we may be more familiar with where we simply wait patiently (more or less) for our turn to come.  Inching closer to the front.  Ten people to go.  Nine.  Eight.  Seven, six, nearly there…  This queue doesn’t work like that.

Diagnosed with a form of organ failure, or chronic illness, a patient is assessed by the medical team who may consider a transplant necessary.  Once on the active list, the patient doesn’t just get a number and wait their turn.  Time on the list doesn’t dominate the decision-making criteria.  It depends on many things.

Which organ, or organs, do they need? Age, size, weight, physical condition, blood type, and many more complex medical factors are all taken into consideration.  How long may they be able to wait?  Are they in acute organ failure or managing a chronic illness?  It may be considered better to “pass” some options for an organ if they are strong enough to wait a little longer for  a “better match” to come.  They may be on a super-urgent list where the medical team, as always, take the utmost care for the most perfect match possible, but with little time to wait.

And patients on the active list aren’t just waiting.  They are doing their best to remain as fit and strong as possible in readiness for the work to come.  If health dips too far they may need to be taken off the active list until they regain strength, enough to have the best possible chance to respond through the intensity of the transplant process and into a steady recovery.

And so it goes on.  A serious game of snakes and ladders, played in a blindfold.  Lives placed on hold, knowing little about how the list is progressing.  The calendar moves on, but they may not seem much closer now than they were.  Waiting for the phone to ring, grab-bag at the ready…

There may be a false alarm, or two, or more.  A call to the transplant centre in faith that a suitable organ may be available only to find, on admission to the ward, even preparing for theatre, that on further investigation all is not as hoped and the transplant can’t go ahead.  Still on the list.  Still waiting.  Hoping…

Only 1% of deaths are in circumstances where organ donation may be considered.

The protocols for considering the suitability of a recipient, of the potential donor organ, and how an organ may be offered and to whom, are long, detailed and complex.  The policy for the “distribution  and allocation” of deceased donor livers is 24 pages long.  It was revised in January 2022 by the Organ and Tissue Donation and Transplantation Clinical Audit Risk and Effectiveness Group (OTDT CARE), and will be reviewed annually.

When a potential donor organ is available, complex decisions are made within a short space of time.  If an organ is offered, and not deemed suitable, it may be offered for another patient.  There are only a few hours available for a successful process.

Patients and their families, and most of the other people involved, are spared these details. It sits with the medical teams, then the SNODs and their colleagues.  But somewhere in the picture is a patient, waiting for a phone call inviting them to come to their transplant centre as quickly as possible, perhaps in a family car, ambulance, air taxi, or all three, blue lights and sirens when needed.

Somewhere else another family’s life turns inside out, changed in the blink of an eye.  Unsuspecting, then plunged into the bright lights of Intensive Care, the persistent bleeping of medical monitors, and then to a quiet room and the news no one wanted to hear.  Only when it is certain, absolutely, that the patient cannot recover, and the news is accepted by the accompanying family, only then can another conversation be approached about the possibility of organ donation.

When the family has had no conversations about organ donation and no knowledge of their loved one’s wishes, it can be much harder to be focused and confident enough to consider donation a positive choice.  That 1% is reduced again.  Whether the legal system requires us to opt in to be donors, or an opt out system considers us potential donors unless we have said no, no transplant can proceed without the clear consent of the family.

The list is long.  Around 7,000 people across the UK waiting for that phone call.  “Waiting in traffic is frustrating…but waiting for a transplant is worse.”  A conversation about organ donation this week could make a difference…

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Organ donation – a school for change…

Young people at the Something for Lucia 28.5.22

Friday afternoon, in a school.  Not where you’d expect to find teachers volunteering for extra time.  They should be heading for home by now, even with a bag full of homework books for marking.

We walked into the main Assembly Hall of Ballycastle’s Cross and Passion College to help prepare the space for the following afternoon. And there they were. Teachers, canteen staff, caretakers, working away like they had nowhere else to go. Half an hour before we arrived the hall had been laid out in neat rows of chairs and small tables, individual spaces for young people to sit in silence and labour through exams. The tables were already gone, chairs in neat semi circles no longer facing the front but focused on a small lectern, table and screen on the long wall. Huge purple and white flower arrangements were arriving.

Since we came back from a small funeral service for Lucia in London, in the first months of lockdown, we had been asked, sensitively, if we might, in time, “do something for Lucia” in her hometown.                                                  “Probably.  When her Transplant friends and family can travel and gather safely again.  Something.  We don’t know what.”

And this was it.  We still couldn’t really define it, so the name stuck.  A “Something” for Lucia.  In her school.  We had come to help, but with outstanding generosity and quiet pride the school team beat us to it.  We looked around the overwhelming evidence of kindness filling the hall, the corridors, the canteen, the courtyard, and stood with Paul, the Principal, our words silenced by risk of tears.                                                                                                            “Community,” he said. “It’s Lucia making community. It’s what she does.”

The following afternoon, the hall was packed.  Young people (and a few others), her cousins, friends of Lucia’s from Ballycastle, from the Transplant Games, from Northern Ireland, Scotland, Wales, and England, even El Salvador, contributed their stories, photos, music, laughter and tears inspired by their much-loved friend.  Pieces of a growing mosaic.

This isn’t a report of the day.  It’s about those young people.  They inspired, as Lucia always said they would. She believed in young people. And here it was. The deep strength of love and conviction, humility in being part of something that had caught us all in a circle of energy.

They were young – as Lucia was – when her autoimmune hepatitis became evident, and her transplant world began.  They accepted what was happening with love and emotion, learning alongside us all. Taking it in and trying to understand.

When Lucia came to plan her first public event, a fundraising day for Children’s Liver Disease Foundation – games, cakes, and a presentation on organ donation in the Council Recreation Centre, her sister and her peers organised it with her.

There were many other presentations to classes, school assemblies, and youth groups.  Presentations at conferences and workshops with health professionals, and politicians.  The ones Lucia enjoyed most were with children and young people.

That’s where Live Loudly Donate Proudly was born.  A deep conviction that accurate information be provided to children, conversations about organ donation, and everything connected to it, including death and dying, made normal.  Normal for children and young people who often, to the surprise of adults, understand the essentials first and fastest.

That shaped Lucia’s vision of including organ donation awareness on Northern Ireland’s National Curriculum.  With ready support from her school, Lucia presented her case to the Minister for Education.  It connected.  Lucia’s campaign continued, even when many of our politicians had “left the room” for a few years.

By the time the politicians returned, they were too late to meet Lucia.  Her school, family, and friends presented her vision again, to the Departments of Health and Education.  By then, the Health Department was preparing a process of public education for a potential change to the law on organ donation.  Lucia’s vision fitted perfectly.

With work from a team of transplant recipients and their families, teachers, donor families, and health professionals, lesson plans for Primary and Secondary Schools are now almost complete and ready for piloting.

Our children, young people, with the correct information and obstacles removed, are an engine of change.  Changing a law is one thing.  Changing a culture grows from a different place, and Lucia’s vision was to nourish one of its deepest and most fruitful roots.

The “Something” for Lucia gathered people together who each had their own pieces of the mosaic of her life.  As we listened in that school hall to her friends, there was no doubting that Lucia was right.  In those children, now young women and men, who had learned of organ donation, of life, through their own experiences as they grew together, it was palpable.  They carried Lucia’s story, and the vitality of organ donation, with passion, gentleness, courage, laughter and wisdom, with love.  Seeds of a very special world.

You were right, Lucia.  Give our children the right information, step out of the way, and watch it grow…

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A bit of a splash for organ donations…

Killary 2022 (2)

In the last couple of years, sales of wetsuits, dry robes and fluorescent tow floats seem to have soared, as more and more people take the plunge into cold water swimming.  With the right care and attention, often in the company of a few friends, it can be a healthy adventure.  It can do wonders for those endorphins, which ease anxiety and depression and help create an improved sense of wellbeing.  You might wonder why we don’t all nip down to the local sports shop, get that huge changing robe and get on with it.  (NB There are other ways of producing endorphins than plunging into freezing water – fortunately.  Says a coward…)

Swimming, even in the kinder waters of the heated, chlorine-dosed pool, is generally a Good Thing.  For many who who have had transplants, swimming (and, yes, other sports and physical activity) can do all the above to assist with the recovery process, physical and mental.  It’s one of the most popular sports of the Transplant Games, and it’s not just about winning medals.

Lucia found a “happy place” in the water, swimming through it, surrounded by it, supported by it.  It was a place where her mind could find some respite.  Maybe it was no coincidence that she was born in a small birthing pool.  In the last couple of years, her Mum has found solace, energy and sheer pleasure in her regular swims from the beauty of our beach – whatever the temperature.

A couple of weeks ago, she accepted the challenge of a 2km swim in Ireland’s only fjord, beautiful steep-sided Killary, in Connemara. Jumping off the back of a boat with about 70 other people in her “wave” (there were about 550 swimmers in total), she was encouraged by the reassuring presence of kayakers and safety boats.  Much to Rachel’s surprise, and our relief, she completed her challenge in a few minutes over an hour, wading triumphantly ashore in brilliant sunshine.

It was a success.  Under the green, tagged swim cap of the Great Fjord Swim Event, Rachel wore Lucia’s red Birmingham Children’s Hospital swim cap.  With the confidence of a completed swim and a blue t-shirt to prove it, Rachel is hinting at another expedition to Killary next year.  Not only to swim, but to make a braver splash of publicity for organ donation, somehow.  There’s time to think about it.

The same day, in Donegal, Seamy McDermott celebrated 20 years since his kidney transplant with another challenge.  He’s already run 20km and cycled 600km this year and finished off his list with the Maple Swim, a 4km swim across Sheephaven Bay.

“My aim in doing all these challenges is remembering my kidney donor and their family. In doing so, I hope to raise the necessary funds for the renal unit at Letterkenny University Hospital. I want to do something that will be mentally and physically gruelling because the pain of these challenges can never come close to what being in the renal unit feels like.”

Of course, as we said, there are warmer, and easier ways to get those endorphins moving.  This Organ Donation Week, you could just go for a walk…  The week’s campaign is encouraging us to go for a walk (in shocking pink, if you like) and prompt some more conversations about organ donation.  You could get creative and walk a route in the shape of a heart, or a liver or kidney, or other transplanted organ, and even record the walk on a tracking app.  (You’ll have to look that one up yourself.).  When you’re back, warm, dry and comfortable, you could add some suitable photos to social media and use #OrganDonationWeek or tag @nhsorgandonor and see who else is out there doing the same.

Mental health, fitness, plenty of open air, maybe some cold water, and raising awareness of organ donation that could just mean someone else, maybe even someone you know, would be able to enjoy all of that as well…what’s to lose?2223-0263-odw-heart-walk-fb-1200x628

Back to the Transplant Games…with a packet of tissues…

Lucia's cap Leeds 2022 (crop)

It was always going to be emotional.  It always is.  The last (42nd) UK Transplant Games had been celebrated in Newport, South Wales, in July 2019.  Since then the foundations rocked.  For too many they didn’t just rock and fall back into place when lockdowns ended and the masks started to come off.  Too much didn’t return to normal, it was  changed.  For some it was changed beyond measure.

The 43rd Games were in Leeds, in July this year.  Over 750 athletes across 25 different sporting events.  More than 1,000 supporters and spectators. The first time together for almost three years.

On the Saturday, before the afternoon’s swimming races, everyone at the pool in the John Charles Centre for Sport stood for two minutes of solid applause, remembering friends who have died since the last time we were together.  Those who were awaiting transplants and didn’t make it.  Donors who gave life to others.  And those who should have been swimming with us but leave us swimming in tears in their absence.

It was always going to be emotional.

But it was the right place to be, and we knew it from the moments we each arrived and were immediately wrapped in kindness.  This Games family is a family that knows the details, the realities that bring us all together.  A family that knows too well the private mental struggles behind the public smiles and the physical effort.  A family that has short-hand code for it all.  We may rarely have words to make it better, but we have reason to listen and empathise, and tissues to keep us going.

Once the competitions start then the tears of the hurting and fearful are lapped by tears of joy and wonder as transplant recipients, now athletes, achieve personal best records, run faster, throw further, play harder, climb onto the medal-winners’ podium, or just doggedly cross the finishing line and show themselves as the heroes and champions they are.

One of Lucia’s good swimming friends asked if she may wear Lucia’s GB and NI Transplant Team cap for her own races.  Three other good friends in turn did the same, in quiet honour of their friend who had died since they last swam with each other.  Each one left the pool with at least one gold medal, and left us with kindness to treasure.

Too soon the T-shirts were swapped for dressed-up-smart outfits and we were off to the Events Centre at Leeds Royal Armouries for the Gala Dinner night, with its trophies, awards, and cups for teams and their supporters who had filled the weekend with courage and friendship.  As we strained to talk with each other over the excitement, and the energy and the music, conscious always of other team members missing now from celebrations they have shared  so many times before, small luminous glow sticks were handed out and wrapped around wrists, honouring the donors who in their darkest hour had made this brightness possible.

It was always going to be emotional.  It always is.  But it’s worth it.  And it all starts with a conversation…

Pretty in Pink?

Orchid 26.9.22 - Copy (2)

I confess.  Pink is not usually my favourite colour.  (Pretty orchid, though.)  I don’t think it’s because of all that stuff about blue being for boys and pink for girls, but who knows.  You never know what nonsense seeps into an unguarded brain.  Besides, that business didn’t really start until the mid-1950s, just a few years before I was born.  I might not think that way, but it’s still not my favourite colour.

This week is different.  This week I’m delighted to see pink all over the place.  Pink posters, pink cards, pink t shirts, pink sweatshirts, pink flags, even some buildings, bridges and monuments will be lit up in pink, standing out against the rest of the night-time lights.

There’s a reason for it, of course.  Somebody chose pink for Organ Donation Week.  I suppose it can be bright and catch attention, and that’s what we need.

Organ Donation week was postponed this year.  It had already been moved later into September than usual to allow schools to get their feet under the desks of a new term so they could join in.  Giving schools a chance is a good move.  More about that later this week. Then it was postponed again, due to the unexpected national event of the last couple of weeks.

So now here we are, 26th September to 2nd October.  Organ Donation Week 2022.  A week of making an attention-catching splash (in pink) about organ donation, how important it is and what an incredible difference it can make.  A week of celebrating the gift of life, being aware of those who need it, inspiring each other to consider organ donation and making sure we all know each other’s decisions.

The organisers are inviting everyone to go pink for the week – “…bake a pink cake, wear pink socks, paint a pink unicorn, drink a pink drink…”, whatever, just have a bit of fun and show some support. In pink.  If you want to play and need a few ideas, have a look at the Organ Donation Week Hub website – Organ Donation Week

So, this week I’ll wear a pink shirt.  It may be a bit of a shock for those who know me.  No bad thing.  And I’m only buying one, so same shirt all week.  (I’ll wash and dry it overnight I suppose…).  See?  No expense or effort spared to promote these conversations about organ donation.  It’s important.  Seriously, of course, it’s much more than that.  It’s a matter of life or death, and wearing a pink shirt is really a very tiny gesture…

Stand up for (and in?) pink this week and show your true colours.

 

Me in pink                                                                    That pink shirt…