Organ Donation Week, and it’s Saturday night so, unless you’ve got something more pressing to do, sort the popcorn, sit back, kick off your shoes and watch a couple of films.  Short ones.  Very short.  One is funny, clever.  The other, only a few minutes longer, is gentle, courageous, beautiful.  Both are brief glimpses into much deeper stories.  Behind the words, the glances, a depth of experience and emotion that is dizzying.

Luke Alexander is, we are very proud to say, a friend of ours.  Lucia found him first.  When Luke was 12 years old his life was saved by a 13-year old stranger who had told his parents he wanted to be a donor if anything ever happened to him.

Ten years on, Luke is a cyclist, a runner and a swimmer, enjoying the chance to compete in the Transplant Games.  Luke and Lucia were both members of the GB and NI team at the World Games in Malaga, Spain (2017) and two years later in Newcastle, England.  Luke recently completed his Coventry University degree in Media Production.  He used his film-making skills to create unique insights into the experiences of organ transplantation.

In 2017, at “Talk, Tell, Transform”, a Children’s Liver Disease Foundation week for young people with liver disease or transplants, young people turned their stories into short films.  Luke took it a stage further and interviewed himself, playing…well, best just to watch it, it’s less than five minutes short.  The link is at the end of this blog.  There’s another one first…

As Luke went through the intensity of his own experience of liver disease, and then transplant, he was sensitive to its impact on others, especially the young boy and his family whose kindness saved Luke’s life.

“I always think about him, whoever he may be. It’s consciously on my mind when I make decisions,” said Luke, adding that the boy’s parents had suffered an incredible loss.  “It’s something that I never forget, day in, day out.”

As well as the boy’s parents, Luke is aware, too, of the impact of his journey on his own family.  Further inspired by people he has met at the Transplant Games, Luke’s new fifteen-minute documentary, “The Other Side”,  aims to be a cathartic experience for parents who have been through, going through, or are about to go through that journey.  It is also a bravely understated insight for the rest of us.

No more to say, this is not a review.  Just watch the film (permission to skip the ads).  Better still, watch it with your family, with friends, and see where the conversation goes afterwards.  You never know when a conversation started through this film may save a life… Thank you, Luke, three generous families, and all those donor families we may never know….

The Other Side

Luke’s story – CLDF Talk, Tell, Transform 2017

                                                                                 Learn it, and pass it on…

 

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.” 

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…

 

 

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?

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…

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, 26^th September to 2^nd 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.

 

                                                                    That pink shirt…

There were cheers and tears in the Northern Ireland Assembly rooms in Stormont last week.

Cheers because on Tuesday 8th February, the Organ and Tissue Donation (deemed consent) Bill was passed by the Assembly.  It was prepared and taken through the intense processes of Assembly debates and Committee scrutiny in 18 months, with no amendments necessary.  Even with “spirited debate” along the way, there were no dissenting voices in the final plenary presentations.

The Bill will be supported by a full process of public information and promotion before (and after) the change becomes law in spring 2023.

This brings Northern Ireland in line with legislation across the rest of the UK.  We understand that the health minister in the Republic of Ireland is now also looking at the process of considering the introduction of similar legislation.

Good reason for cheers in Stormont.

And for tears, too.  However measured and gracious the speeches in the Assembly, and they were, it was an emotional day for many.  Far more than the letter of a new law, raising the profile of organ donation can make the most profound difference to those who are waiting on the list to see if they can be given another chance of life.

In Stormont’s Long Gallery, just along the corridors from the Assembly Chamber, were thirty or more guests the Minister for Health had invited from organisations, campaigns, and support groups to watch the Plenary and to celebrate its positive outcome (not really in doubt by that stage.)

Rachel attended on behalf of Live Loudly Donate Proudly.  “It was great to see people from across the spectrum of organ donation involvement together in one place for something so hopeful.  Specialist nurses for organ donation, representatives from the NHSBT, Health Trust, British Heart Foundation, Children’s Heartbeat Trust, Kidney Research, the Royal Victoria Hospital Liver Support Group and other groups and individuals and committed campaigners, and, of course, Dáithí.  A proud moment to be there.”

Yes, in the middle of them all was Dáithí Mac Gabhann, a five-year old boy who has been on a waiting list for a heart transplant for over three years.  Dáithí’s family, with Dáithí a vocal and lead participant, has campaigned and lobbied hard for this change in law, recruiting the support of all the politicians they could reach along the way.  They have also connected well beyond the politicians, enlisting colourful support from the Belfast Giants (Ice Hockey team) and many others in the NI sports world and beyond.  The new law honours their impact on the process and will be commonly known as Dáithí’s Law.

The drive to raise the profile of organ, blood, and tissue donation, is frequently championed and inspired by those who have received transplants themselves and know the immeasurable joy and treasure of renewed life.

And by live donors and families of deceased donors who also understand the power that their gift for another can have in their own lives.

And families and friends who, in immense gratitude for extra years of life with their loved one through the miracles of organ donation, raise their voices gladly to encourage us all to make that same precious gift possible for someone else.

Some of the brightest champions were no longer able to be physically present in the room to celebrate the moment.  Deeply missed, but not missing…

There were bound to be tears.

Live Loudly Donate Proudly will continue encouraging informed conversations with our families and friends.  Irrespective of the system, opt-in or opt-out, our families, (or a friend of long-standing if there is no family), will have the last word.  Clinicians will not proceed with organ donation without this agreement.  It is still as important as ever that we know what our loved ones’ decisions would be, whatever they are.

And it will still be necessary to tackle the myths…

But that’s for later.  For today, let’s celebrate and be grateful for the gift.  The gift from the Assembly.  And the gift, and it always will  be a gift, of life-saving organs, blood or tissue for another.  A gift of love, as precious as anything ever given on St Valentine’s Day.

On the twelfth day of Christmas my true love gave to me…Twelve Drummers drumming.

So that’s it. Twelve days of Christmas, twelve blogs. Twelve drummers to drum up conversation about organ donation.

Many people who have had transplants, or have supported their loved ones through the transplant process, or who are waiting, waiting, waiting for a transplant to happen, go to much more extraordinary lengths than blogs to drum up support and awareness.

Like the Great North Run, the largest half-marathon in the world. Two good friends of ours, Millie and her mum, Alison, completed the Run a few months ago (story link), celebrating the twentieth anniversary of Millie’s liver transplant and raising funds for Children’s Liver Disease Foundation.

We know Millie recovered well because in November we watched her on the BBC as she pedalled thirty miles as part of the Rickshaw Challenge for Children in Need (story link). “It was incredible to be a part of this challenge,” Millie said, “and have the platform to get the word out there about liver disease and organ donation. To know that we are helping so many other people and projects across the UK is amazing.”

Lots more transplant recipients and their families have cycled, walked, swum, abseiled, climbed, even jumped out of aeroplanes with parachutes that don’t open until a long way down to raise funds and, most important, to get those conversations started.

Another friend of ours, so moved by his daughter’s experience with a lifesaving transplant, shaved his head and had it tattooed to raise extra support for the Children’s Hospital.

One little boy, Dáithí, and his parents, lobbied every politician they could find to promote awareness of organ donation, and then enlisted the support of giants for their campaign – the Belfast Giants, the first professional ice hockey team on the island of Ireland.

Dáithí is five years of age and on the waiting list for a heart transplant. His dad, Máirtín, says, “Talking about organ donation doesn’t have to be this very depressing, serious conversation; it could and should be more like, ‘in the event that anything was to happen to me, I would love to give the gift of life’ – that simple conversation could spark someone taking the steps to join the organ donation register.”

And the Transplant Games, of course. One, huge, organised way to bring together a few thousand people in a mosaic of fun, courage, and gratitude, building a picture of lives made new through transplants. Like a whole steel drum band of awareness raising.

If you’ve read, liked, shared, or supported these twelve days of blogs in any way, thank you. If they are useful in sparking those conversations, even better. If you’re already banging the drum for organ donation, brilliant, thank you even more, and all strength to you. If you haven’t yet, then start tapping, follow the beat of your heart, and see where it leads… And may the year be extra kind to you.

On the eleventh day of Christmas my true love gave to me… Eleven Pipers piping.

Who pays all these pipers?  Eleven of them today and probably eleven more tomorrow.  What would that cost?  It’s no surprise to find that some people have wondered how much all these gifts might set you back and gone off to work it out.

In too many countries, an organ transplant would cost much more than all the 12 days of Christmas gifts together, however that’s calculated.  In most countries it needs heavy insurance cover to make it possible if it’s an option at all.  Taking on that first gift from a donor is beyond the reach of the majority.

In the UK, thanks to those with vision and commitment and courage who pushed against the odds, we are blessed with the NHS.  That means access to an incredible quality of skill and care, machinery, and medication no matter what our financial or social background.

If you really want to, you could dig around to work out an average cost of a transplant.  Don’t forget to include the cost of all the staff, the wards, the operating theatre, the radiologists, the physios, the…well, everything and everybody on an enormously long list.  Then there’s the medication and years of after-care.  All those appointments.  In some cases, there is support for travel to and from the hospitals, even accommodation for family, especially when the patients are children.

It really is a very long list, far too much for a short blog.  Just imagine all that cost. Imagine it was spent on you, to save your life.

Then forget it.

It’s not about that.  Yes, it needs to be found and managed.  And, so far, from our taxes and national insurance contributions, our welfare system manages to deliver an outstanding level of quality care, free at the point of need.  That level of care and kindness goes well beyond any budget-line.

Even when the NHS slips and doesn’t manage to match its own best standards or is under immense stress and strain as it is right now, most of it, for most of the time, thanks to the teamwork of its outstanding staff and their commitment to go beyond the extra mile, continues delivering the excellent life-saving service we are used to.  So far.

In the case of organ transplants, the NHS becomes the skilful steward of another gift that goes well beyond any price.  On top of everything that the NHS is for most of us, there is a gift that even they are in awe of – the gift of organ donation.  And that’s in the hands of each one of us…

On the tenth day of Christmas my true love gave to me… Ten Lords a-leaping.

This blog is usually written from Northern Ireland.  We’ve no local equivalent to the House of Lords.  Any Lords or Ladies from here must leap over to Westminster to go about their business.    While they are a-leaping about over there, the N Ireland Assembly, Stormont, gets on with its own business, including shaping new laws.

One of the Bills going through that process here aims to introduce the opt-out system for organ donations.  If the Bill is passed, adults in N Ireland will be considered potential organ donors unless they choose to opt out or are in an excluded category.  It would bring N Ireland into line with Wales, Jersey, England and Scotland, where the opt-out system is already in use.

Last year, the Bill made it through the First and Second Stages in the Assembly.  In December, the Health Committee scrutinised and approved it, clause by clause, line by line.  It now goes back to the Assembly for more debate and then a Further Consideration Stage.  The Final Stage is one last opportunity for debate in the Assembly, with a vote on whether to pass the Bill.  If passed, it is formally given Royal Assent and, at the next full sitting of the Assembly, it is announced and becomes an Act of the Northern Ireland Assembly, a new law, usually coming into effect at once.

There’s a lot to do.  There are elections due here in May and thirty Bills on the table.  If it doesn’t get through before then the whole process goes back to the beginning and starts again with a new (or newish) set of politicians.

Meanwhile, about 115 people are on the transplant waiting list in N Ireland.  Across the UK, there can be more than 6,500 on the transplant list in a year.  Experience is strong that the opt-out system can lead to a higher number of organs becoming available, therefore saving more lives.

Donation will remain a personal decision.  Anyone can choose to opt out and not be considered a potential donor.  But no organs will be retrieved without the full consent of the family or loved ones.  Specialist Nurses will always talk to the family, and unless the family give permission, it all stops there.

Which brings us back to the aim of Live Loudly Donate Proudly – to encourage those who choose to be willing organ donors to be loud about it – to sign the register, to talk to family and friends and let them know your decision.  It makes a difference.  Only 5 in 10 families are likely to give permission unless they know it was their loved one’s wish to be considered a potential donor.  Then it leaps to 9 in every 10.  As only 1% of all UK deaths are likely to happen under circumstances allowing organ donation, that leap is a lifesaver, many times over.

Let people know what your decision is, what you would like to happen if the circumstances of your death allow organ donation to be considered.  Let people know and be proud of it.  More conversations mean more transplants.  More transplants mean more lives saved.  So, Lords, Ladies or whatever, leap to it…