Not defined by, but committed to…

“Once upon a time, there was a girl who really loved to swim. The end.”

So said a lovely card we received a few days ago on the fourth anniversary of Lucia’s death, 24th May.

A picture of a girl gracefully diving into high sea waves. A message of great kindness within.

True. Lucia loved swimming. The water gave her a place to feel free from daily struggles.  A place to focus.  To feel fit.
Another place to be grateful to her donors.  When it led to the podium there was always a beaming smile as she stood proudly with others and collected her medal.

But it’s not the whole truth. There is, of course, so much more to her life than swimming.

In February 2019 Lucia wrote a blog for her good friend, Lucy.  It helped launch the first campaign for Renegades Foundation, an online platform for some powerful young voices “making noise about silent stigmas”.

“My medical history does not define me”, Lucia wrote.
“The girl with the liver transplants. Anorexia. Anxiety. Diabetes. Auto-Immune Hepatitis. It would be fair to say that a good proportion of what makes me me – are medical conditions.

But that’s all it is. A proportion. It is not the whole of me. These words do not tell you WHO Lucia Mee is.

So, I will.”

And she did, in her own unique style.  You can read that blog here.

The twist/gift is that although her medical conditions didn’t define her, those conditions, and the medical responses to them, helped shape her life.

“I would say organ donation, my donor families, my donors, didn’t just save my life, they shaped my life because I now do all of these things that I would never have had a chance to do had I not been a transplant recipient.  In that sense, in so many ways, I would never, ever change what’s happened to me because, partly it’s the way I’ve grown up, but it’s given me such a unique and special life that, why would I want anything different, you know?  I go to the Transplant Games.  Transplant Games is the highlight of my year…I love it…and it’s given me all the passions that surround the Transplant Games, like my swimming…having interests, passions in life, and just…life in itself, to give you appreciation for the little things…  (Lucia, The Listening Project, British Library Archives.)

That’s the power of a transplant, the power that lies in those conversations, in consent for organ donation.  An opportunity not just to get back into life but to see it with new perspectives.  Deeper awareness that life is not to be taken for granted.  It is a gift.  Welcomed, appreciated and lived to the corners.

Lucia took her story and made it a resource to make a difference for others. In speaking of organ donation and its power to save and transform, she found the gentle power of a grateful voice, the flower that cracks through concrete, the word that can break a heart open.  And there were listeners…

But there was so much more.

“There is so much more to me, and to everyone. Your story is never just about one thing. So many things go into making us humans who we are. 

I am hard working. I am resilient. I am sarcastic. I am a writer, a swimmer, a reader, campaigner, feminist. I am a small-town Irish girl who wants to travel the world. I am still learning who I am, how to be independent whilst living with multiple medical conditions. I’m figuring out what my future might hold. I’m a sister, a daughter, cousin, best friend and ‘the single friend’. I’m stupid and crazy and a tiny bit reckless. I can take care of myself but probably no one else. I am not a cook. I am not the tidiest of girls. I’m creative and organised in a unique kind of way. 

I am a young woman who is figuring out what life looks like, and one part of that life happens to be my medical conditions. It contributes to my story in a big way, but it is not the whole book. 

I am so much more than my medical notes.”

Powered by the gift of strangers. The consent of organ donors and their families. It doesn’t just save lives, it transforms them.  A life that can become so much more, and so much more in the lives of others.

Four years on, we know our relationship with Lucia cannot be defined only by her death. It is more. We are more because of Lucia. And twelve and a half years extra with her because of her donors.

Like Lucia, we may not be defined by her medical records, or even by her absence.

Her donors transformed our lives, too. And Lucia’s commitment to making things better for others, is contagious.

Today, on her 25th birthday, we are with Lucia in reaffirming her commitment to Live Loudly, Donate Proudly…

Live Loudly Donate Proudly stones May 2024 crop


When silence can inspire a voice…


Caitlin McBride (3)

Sometimes struggle is on the outside, and plain for all to see.

But sometimes it’s hidden, silent, locked away.  Even then, sitting and doing what you need to do can be more than you imagine.  You never know what else you might be achieving…

Today is International Women’s Day and the theme this year is #InspireInclusion.

We are privileged to post this blog from Caitlin McBride, a courageous and honest story of personal struggle, of unspoken inspiration between two young women, and a deep commitment to inspire and support others.


“This is the first piece of non-academic writing that I’ve undertaken in a while, and the first that will be publicly viewable. I’m unsure how to start, but I feel it is most fitting to begin this blog by approaching it as a conversation; in the spirit of Live Loudly Donate Proudly.

Hi, my name is Caitlin; I’m a counselling student, judo player, and of course – organ donor. I joined the organ donor register in early secondary school, as a result of Lucia’s passionate campaign and inspirational story. (Lucia, founder of Live loudly Donate Proudly.)  I went home that day, and when asked about what I had learned that school day, I told my family about Lucia and brought the conversation about organ donation to the kitchen table.

Lucia’s impact on me did not end there. During my time in sixth form, a particularly difficult period in my personal life, I watched her studying alone from just a few tables away in the library and was inspired by her drive and resilience. Unknown to either of us, we had a shared struggle at the time with disordered eating – and not only that, we also had a shared reason for continuing to study despite the ailments that troubled us both. We both aspired to pass on the care bestowed upon us by the healthcare professionals who provided pillars in our support systems.

It wasn’t until I overcame the social anxiety hindering me from contacting the Live Loudly Donate Proudly Facebook page that I found out about our similarities, because I never approached Lucia back in high school. I wanted to tell her family how much of an inspiration Lucia was to me back then, and how her character – so full of life and determination – continues to shape my discipline and motivate me through academic challenges on my journey to becoming a therapist in the mental health field.

That journey was not always smooth sailing; consisting of a few gap years, a few episodes of wondering if I was good enough to contribute to the field of mental healthcare and a lot of introspection as well as personal development.

Throughout this transition I have connected with so many wonderful people and challenged the most stubborn of limiting beliefs. I realised how the support of others can become a source of strength, and how uplifting connection as well as communities can be. In this endeavour to facilitate a safe space for people like Lucia, myself, and so many others who hold their struggles silently – I learned that many of us will unknowingly be a light in someone else’s sepia toned world. They may not always tell you; but you inspire people purely by being yourself.

Chatting to David (Lucia’s dad), learning of her sister Alice’s current role in schools across the pond supporting students and defending them from the demands of the education system that weighed so heavily on me as a teenager truly helped to solidify the realisation that there are so many people out there willing to offer those of us feeling lost, their shoulders to lean on. That there is constant care and connection between all human beings – and that strangers are simply people we have yet to learn from or build a relationship with.

I always regretted not approaching Lucia in the library back then, but only when I experienced huge loss myself did I realise how heart-warming it can be to hear stories about those loved ones who are no longer with us and what they mean to others. Only then did I realise how precious time is, and how important it is to say the kind things that you think of others aloud to them. I didn’t want to regret not approaching her family either, so I started the conversation. As it turns out, and as David so wonderfully worded in his response, “No gift of kindness is ever wasted.”

Our conversation led to me sitting here, writing this blog by the beach and thinking about Lucia, her legacy and her family’s continuation of that. Thinking about kindness; thinking about my lost loved ones; and the invisible string that connects us all – regardless of if we interact. I find it wonderful how our natural way of being can be a source of inspiration and how such amazing things can come from approaching a conversation – especially when it’s not exactly easy or includes a topic that we often ignore; whether that be organ donation, ill mental health or anything else.

I feel extremely privileged to have been offered the space to write here on Live Loudly Donate Proudly and hope that I have done its ethos justice. I am so sincerely grateful for the conversation that followed a successful fight with my social anxiety and I’m so very thankful that you’ve read along and joined the conversation.”

Caitlin McBride

Big Yellow Friday…

Yesterday, 1st March, was Big Yellow Friday.  A day when the Children’s Liver Disease Foundation (CLDF) ramp up their programme of fundraising and awareness raising. Supporters wearing yellow in various guises, baking yellow cakes for sale, sponsored dish washing in those fashionable yellow rubber gloves.  It even coincided with St. David’s Day this year adding something else to the waving of yellow daffodils.

Daffodil Big Yellow Friday 1.3.24

Yellow?  Simple.  Jaundice is when your skin or the whites of your eyes begin to show tinges of yellow.  It can be one of the early and developing symptoms that all is not well with a liver.

It was that sign of yellow in the whites of her eyes that took Lucia, the founder of Live Loudly Donate Proudly, to her local GP.  He triggered a process of attention that led to an emergency liver transplant after acute liver failure.  The yellowing of her eyes gave enough warning for Lucia to be in the heart of the hospital system before the crisis took hold.  Well worth watching for the warnings of yellow…

After her second transplant, just over a year later, Big Yellow Friday was Lucia’s first fundraising venture, along with the enthusiastic support of her sister and their friends.  It also helped her find her voice as she gave her first public, illustrated presentation on organ donation, aged 10.  In years to come Lucia was a regular supporter, participant and speaker in CLDF events and conferences.

CLDF is a firm favourite of ours in Live Loudly Donate Proudly.  It’s a fantastic organisation with a wealth of experience and resources to help children, young people, and their families weave their own ways through a world of new languages, big issues and complicated experiences.  Packed with resources, from leaflets about baby jaundice and even a colour chart of a baby’s stools, to inspirational information packs for young people on how to manage an inclusive range of growing-up experiences alongside liver disease and transplants.  More information packs for parents, for schools, and even for GPs.  Blogs and newsletters for health professionals, and grant support for vital paediatric liver research.

CLDF offers direct, personal and group support for children and young people, through events, residentials, and programmes.  ‘Talk, Tell, Transform’ was an excellent residential programme bringing young people together to share their experiences, learn from and support each other, and then through learning film-making skills, turn their stories into honest, moving, funny resources for others.  (Youtube playlist of CLDF Talk Tell Transform )  That programme is temporarily parked, but Hive, a “Facebook-based social network created by young people exclusively for young people with a liver condition or transplant” continues to cater for 13-15 year-olds and Hive+ for 16 – 24 year olds.

In a few weeks time, CLDF is to merge with the British Liver Trust, becoming one larger organisation in the belief and hope that they will be better together, better for each other, stronger and more effective and resourceful for others.

So, on Big Yellow Friday, we raised a yellow bun and a daffodil for this excellent organisation that offers solid and creative support for those who, out of the blue, find the hint of yellow that plunges them into new and demanding worlds.

Well worth a day of extra attention – and its always a good day for any support you are willing to give… Thank you, CLDF…

Lucia speaking at Children's Liver Disease Foundation Conference

Twelfth day of Christmas – come along to the celebration…

Twelve days of blogs. On this last day of Christmas, an invitation to a celebration.  A huge jump into what for many in the organ transplant world is the highlight of the year, the Westfield Health British Transplant Games.  This year they will be held in Nottingham, 1st – 4th August.

If you’re a donor, or you’ve received a transplant, there’s a place for you to participate as a competitor.  You don’t have to be a practised athlete, just someone who wants to have a go and give it your best.  Any age.  Teams are registered through the hospital that carried out your transplant so ask for your hospital’s Team Manager and sign up to come along.

You could also participate as a volunteer, or a sponsor or fundraiser.  (More info.)

Or you could just come along anyway.  Come and watch, come and support, come and cheer people on.  Sign up for the 5k or 3k Donor Run (or Walk!), a colourful and fun adventure for the serious and not so serious, all proud to raise awareness of the incredible world of organ donation and life-transforming transplants.  Watch the social media for the Games and pass the word along.  Just come and be grateful that it’s all there, miraculously, for all of us if and when we need it.

Or come to say thank you, one more time, for the donors and their families.   You’d be joining in with the loudest and longest thank you of the Games…

You may have given your consent to be considered an organ donor yourself. Donating blood, plasma, or bone marrow are also options as life-transforming gifts.  And letting your family, your loved ones, know what your wishes are about organ donation is as important as ever.  Without their consent it couldn’t happen.

If you’ve already done all that with your family, and you don’t need to make it any plainer, don’t stop there. Start a conversation somewhere else. Have fun with it. Wear a badge. Hang an organ donation air freshener in your car and give someone a lift. Use a lanyard at work that invites the conversation. Carry a rolled up copy of the Organ Donation Times (there isn’t one – you could start it?). Have your head, arms, or whatever tattooed with something that will start the conversation – some people have, seriously. As one friend of ours says in the name of her new Instagram account for organ donation awareness, “Skip the small talk”.

However you do it, wherever you are in any of the blogs these twelve days of Christmas, somebody, somewhere, could already be saying thank you for you.  From the deepest place in their hearts and minds. Even if they don’t know you. You may be, or become, a donor. Or you may be the “single word that can make a heart open”, the ripple that becomes the crashing wave of someone else’s gratitude.  Live Loudly Donate Proudly…

Eleventh day of Christmas – schooling with a difference…

School’s back, or soon will be for everyone else. Terms will also start in many hospitals, too, so children who are inpatients don’t have to miss out.

There are lots of ways of helping children keep up with school progress and interests in learning while they are in hospital, or off school for long periods due to their illness.   Some of the Children’s Hospitals could have as many school staff as some average size schools.  The staff may teach in small classrooms, in corners of a ward, or one-to-one at the bedside.  Most children will be short-stay patients so teachers will have to build relationships very quickly and work with flexible lesson plans, as well as often manage some intense emotions.

For the children it is a way to recover some normality, something familiar, creative distractions from serious illness and the traumas of being in hospital.  But it’s not just ‘back to school’, it needs to be tailor-made to suit the students and their circumstances.  The vision of the James Brindley Academy, providing schooling through Birmingham Children’s Hospital, is “…to ‘Think Differently’ to inspire young people to overcome all barriers and achieve their dreams.” (A good model for education everywhere?)

For those children, and sometimes their siblings, in hospital for lengthy stays or frequent visits, the school team is a valuable part of the picture.  Good support for parents too, seeing their children cared for and enjoying opportunities to develop their skills and learning.  Time to slip off for a coffee, or a phone call, with gratitude to yet more people in the team.

Meanwhile, in the home community, there are teachers who help the class show their care for their absent friend, holding their space in the place they know best.   Cards made in class time, letters written from school friends and sent to the hospital, are treasures that reassure a distant patient that they are not forgotten and haven’t lost their place.  A ‘welcome home banner’ painted by the class.  Time given helping classmates understand the reality of the illness and the space given to the young person on their return to school.  A chance for them to tell their story, if they choose, and to be accepted and understood if not.  A novel about children and organ transplants read together in class with sensitivity and understanding.

For some it can take other pathways.  Time out of school can bring disruption to friendships and circles.  Misunderstanding of medical conditions and fears that grow in the absence of accurate information can leave someone vulnerable to isolation or bullying.   The schools that manage that well will not be forgotten (nor, sadly, will those that don’t).

How do teachers, learning support assistants, others in the school teams, deepen their own understanding of organ donation, or other long-term conditions, to make it better for everyone?  How can they sharpen their focus on the children in their charge who are in most need of support?  Paradoxically, they may be the very resources that could strengthen abilities in us all for empathy, compassion and care.

(Live Loudly Donate Proudly has helped ensure organ donation awareness materials are available for all primary schools in N Ireland, with secondary schools to have the same this year – for more see our previous blog).

Schools, like the rest of us, work best when we pay caring attention to those who need it most.  It’s repaid many times over.  Grateful for our own experience, and that of many other friends, thank you – thank you to those who make it all work through their teaching in hospitals, at home, or in our schools, teaching much more than a curriculum.  Five Gold Stars on the chart…

Tenth day of Christmas – working to let the best happen…

Maybe you are one of those good souls who was working over Christmas or New Year, keeping the engines running and the wheels turning, the ward looked after and the shop open.  If so, thank you, and enjoy your well-deserved break when it comes…

For others it was back to work on Tuesday, or today, after some time to be somewhere else and do something different.  There are more than enough wistful jokes on social media this week about finding ways to avoid going back and prolonging the holiday instead.

There are some who won’t be going back this week because of being in hospital, either as patients themselves or accompanying those they love who are ill.  They will need another set of supporters.  Colleagues and bosses who can understand enough to say, “Go. Do what you need to do. Be where you need to be.  We’ll work out all the rest between us.”

It isn’t everybody’s experience. Not for those whose hearts are breaking and must still turn up for daily work. How do you concentrate then? How do you pretend you want to be at work when everything tells you and those around you that you want to be by the side of your son, your daughter, your loved one, in their own personal, painful, frightening journey?  Sometimes it’s called compassionate leave, compassionate for a reason.  But can it still be called compassion if it starts to drain funds and doesn’t last long enough?

For those employers and work teams and colleagues who give the gift of time, and secure protection, who find ways to care and to support from within the workplace, who take up the slack for a missing colleague, keeping things going in their absence, finding ways to make it happen and getting creative with the support, going an extra mile, or two – this is also a gift beyond words. Time given to an employee is precious time given to a child, a close relative, a dear friend, a contribution that allows the best of love to continue…

Thank you to those who help us to be where we need to be. Thank you to those who work at it and guard it when it’s needed.  It can never be repaid, though it will not be forgotten, and who knows who may need it next?



Ninth day of Christmas – what’s invisible really counts…

Christmas and New Year can stir up a variety of emotions, some grateful or hopeful, but also some difficult. For some people, organ transplantation and related illnesses do the same.

Our mental health may need, from time to time, the trained healers.  There is no shame in that, anymore than going to a podiatrist or a cardiologist.  We need more of these services, and easier, faster access when they are there.  But it also depends on so much more than the professional healers.

It all counts.

The shop assistant saying hello and giving a smile, someone helping us find street directions when we need them, a chat over a pot of tea, the thousands of ways the web of goodwill holds us together.  Unexpected carers, who include us in their daily threads, weaving us back into normal life when we are at risk of feeling – or being – isolated.

Family and friends, giving space to listen, to speak, not making us fit a mould but allowing us to be ourselves, in our own different ways.

The networks of support for our very particular needs – like those groups in yesterday’s blog who, receiving kindness themselves, develop ways of paying it forward.

Those who share similar experiences to us and don’t need everything explaining, who know before we say, or recognise deeper issues when we scarcely have enough energy to give hints or clues.

It’s all about our mental health.  And reasons to be grateful when it’s named, accepted, befriended, and talked about.  Grateful for the skilled professionals, and for the space we give each other where we can breathe, slowly and steadily, while we regain our balance…

Eighth day of Christmas – good company for a New Year…

The countdown.  The clock ticked past midnight, and a new page began for a new year.

Whatever resolutions we make, or don’t, and whatever it says on our calendars, it’s all still to be written, page by page.  Whatever comes, and whatever we bring to it, we hope for good reasons to celebrate, good people to share it with, and good support to help us hold it all together.

The blogs over these twelve days are each about some of those good people we find through the organ transplant experiences.  And there are so many.

For most of us, our introduction to the concerns that may lead to organ transplants is not a gentle opportunity to dip a toe in a warm sea by a sunny beach but more like being thrown headlong into the shocking cold of a grey winter’s crashing waves.  Unlike the voluntary choice of a cold water swimmer, it’s unwanted and unwelcomed.  And it’s not long before the questions start to come ashore, as relentless as the waves.

The good news is that there are lots of people who can support, accompany, listen carefully, and then provide, or help find, the information that could be most useful.  (Google is not usually the best place to start.)

Because Live Loudly Donate Proudly grew from experiences with liver failure and liver transplants, that’s the path we know best, but there are many groups and organisations that have grown from or focus on issues and illnesses from all aspects of organ failure and transplants.  Many of these have been started by individuals or families deeply affected themselves, determined to offer as much support as they can to others in similar circumstances.  Like the ‘yes’ of consent to organ donation in the pain of the death of a loved one, there are countless people turning their own stories of shock and struggle, healing or not, into resources for others.

And like other stories in these twelve blogs for Christmas, their work goes on all year round.  You may come across them anytime, in the local papers or on social media, in the office, the supermarket, on the bus – anywhere, doing any of the following:

  • Fundraising to provide accurate information and resources, or to support families and individuals through the financial hardship that can often accompany sudden or prolonged illness
  • Looking for support to continue programmes for children, young people, parents, families, bringing them together to listen to and talk about the million and one different issues that come with transplantation, and the illnesses that may lead to it. And to have fun, ‘be normal’ with others who understand and don’t need explanations
  • Adding extra non-medical resources in hospitals for patients and for their families, making their stay as supportive as possible
  • Providing extra equipment, or training opportunities for medical staff, creating spaces for shared learning ‘outside the structure’
  • Telling stories of others, making experiences less isolating, less frightening
  • Bringing people together for coffee in public places, providing support for some and information for others
  • And the list goes on…

Somewhere out there, in this new year and all through it, hidden in plain sight, are thousands and thousands of people giving their time, mental energy and ingenuity to making the place a little easier for someone else caught in these waves.  If you are one of them, thank you.  Thank you.  And thank you again.  If not, keep an eye out, an ear open, for this incredible dynamic of goodwill.  So much to be proud of. Whether we need its direct support or not, it is a good thing to start a new year knowing the uncertainty of the coming calendar is already sown with the seeds of kindness…


Some helpful friends:

Children’s Liver Disease Foundation

Kidney Care UK

The British Heart Foundation

NHS Blood and Transplant

Organ Donation N Ireland

Live Life Give Life

Altnagelvin Parents Support Group (Facebook)

RVH Liver Support Group (N Ireland)

Seventh day of Christmas – Families and friends…

She’s only three.  She hands you a picture, pride, joy and excitement in her eyes.  “It’s for you, Mummy.  I did it in playgroup.”

You see the colours arranged on the page.  Some lines in it somewhere.  “That’s beautiful, thank you, so much!”  A big hug.  You daren’t ask what it is.  It should be obvious.  You wait.  Eventually, “That’s our house, and that’s my puppy (when can I have a puppy?), and that’s a polar bear, and…”

It may not look like that to everyone else, but it’s lovely.  It goes on the fridge, or gets tacked to the side of a bookshelf.  It may even find it’s way into a frame and become a family treasure.

Families and friends.  Mostly they are around, near or far, and we dip into each others lives when we can, when we wish, or when we must.  When illness refocuses our priorities, we may see each other anew, clearer parts of the picture, if not actually in our true colours, then something a bit more evident.

We’re all in the picture, somewhere.

Two good friends visited us in the hospital, wanting to be there for us, “…and not just as decoration.”  The man proudly handed over a home-made cake.  His wife suggested, mischievously, “Ask him why he baked it.”  Rumbled.  “Yes, well, I saw the oven was on and didn’t know there was anything in it. I turned it off.  So I thought I’d better bake another.”  It was a good cake, all the better served with love and good humour.

Friends who look after siblings at a moment’s notice. (“My parents abandoned me,” she smiles, with cheeky tones, “but they had a better shower than ours so it was OK!”)

The practical ones, those who look after the cat, bring the food, look out for the carers, keep the right news circulating.  Make sure the bank account doesn’t run dry with unexpected expense.  Solid.  Dependable.

Those who hate hospitals and sickness and everything to do with them and would run a mile from it all given the choice, but show up anyway, sitting hard on their own fears, as long as they can, for the sake of another.

The whacky ones wafting into a ward or post-hospital lives causing a mixture of embarrassment and humour, caution and wonder.

The poets and artists, digging deep into images and connections and bringing smiles with a simple hand-made card, a photograph, a small gift of thought and beauty. Philosophers, with alternative frameworks and different perspectives.

Those who travel, hours and miles, to give time and company for as long as they can.

Those who dip in and out, juggling demands of home, family, employment, and still find space to include you.

Those too young to understand or too elderly or vulnerable to take it all in but give their gentle hugs anyway.

Those who plead your case in the highest divine courts they have in their toolkit of beliefs, pounding the doors, demanding attention and the best results.  Others with no words who simply light a candle on their mantelpiece and keep you in heart and mind.

Those who stay the course, long after the first plunge into hospital care, through many more operations, procedures and hospital visits, loyal and untiring, knowing organ donation isn’t simply a cure…. “A friend is someone who knows the song in your heart and can sing it back to you when you have forgotten the words.”

Those who…  you fill in the gaps with the ones you know, or the one you think you are…

In the universe of organ donation, there is another family we may never know anything about.  They are often, sort of, on the other side of the paper.  As their own story becomes their worst nightmare, their yes to organ donation answers the dearest wish of another.  However unseen, they will always be part of the picture, as essential as the paper and the paint.

Living donors may be in full view, shaping the painting in equally permanent ways.

We’re all in the picture somewhere, colours blending or clashing, hardly ever fitting neatly between the lines.  Messy?  Yes,  probably.  And some colours may come to mind because they are missing.

It’s given with love’s intentions.  We do our best in the only ways we can.

So we’ll receive it with hugs, stick it to the fridge with the magnet we found on holiday, or frame it, hang it in pride of place and treasure it for ever.  Family and friends, this one’s for you.  Thank you… (Oh yes, and Happy New Year!)


Sixth day of Christmas – remembering excellence, and more…

There will never be a shortage of reasons for gratitude in our world of healthcare.

That’s not turning a blind eye to genuine mistakes, mess-ups, even abuses and cover-ups.  They all need timely attention at the least, lessons learned, new practices implemented, holes blocked up and serious intentions of “never again”.

Unfortunately, bad news sells, and when things go wrong, we seem to pay more attention.  The headlines in the mainstream and social media may suggest that more things go wrong than right, but that’s a very long way from the whole story.

Most of us who find ourselves in the care of the NHS and its supportive structures could tell a different story.  The bad stuff, horrible enough when it happens, only accounts for a minority of experiences. Most of what happens is at least good, or very good.  Some of it is, by any definition, excellent.

We’re so trained to spot what’s wrong rather than what’s right that we may walk past the good and the better, and even the excellent, without comment, even taking it for granted.  And when we do say thank you, however fully and eloquently we manage it, it may be received with a wave of the hand and “Thank you, but we’re only doing our job.”  What then?  Perhaps a card, a letter to the ward.  Will it be seen by those we thank?  What if it were, and could be appreciated and taken to heart?

Adrian Plunkett is a consultant in the Paediatric Intensive Care Unit (PICU) at Birmingham Children’s Hospital.  After reflecting on his own experiences as a patient, he set up Learning from Excellence, encouraging staff to recognise and report when things go well.   It’s a way of saying thank you that gets logged, and triggers a note of appreciation for the staff member.  It provides a way of learning from when things work well – asking not only what was good, but why it was good and what difference it made.  Saying thank you, expressing gratitude, and being appreciative of team members is also powerful food for morale and resilience.  ( Learning from Excellence )

We weren’t surprised to see such a thing start in Birmingham Children’s Hospital.  Live Loudly Donate Proudly blogs are littered with thanks for years of incredible care for its founder, Lucia, her family, and for many others.  Learning from what works well should keep them all busy for a long time, there’s plenty of it…

This day four years ago it was another team, in King’s College Hospital, London, that showed us their excellence.  Actually, we didn’t see most of it as it happened inside the Liver Transplant Theatre, and through most of the night.  Lucia had walked along the corridor and into the care of the theatre team for a fourth liver transplant.  Through her hugs and smiles, her hope shone.  “Well, see you next year!  You’ll see me before then, but I won’t wake up until then.”

The transplant coordinator spoke with us a few times through the night, then, at 3.30am,  “They are still working.  It’s not going very well.  They are doing all they can.”

A long hour later, the lead surgeon came into our waiting room.  “Better,” he said.  “Not good, but better.”  There was immense, intense relief in hearing that simple word.  Better.  Even though what followed set its limits.

Later, we began to hear the story of that night’s operation.  It’s for another place and time, but we heard enough over the next days and weeks to understand something of the excellence that had been given to Lucia in the theatre.  More, we heard of Lucia’s own incredible strength and resilience as, time and again, the team thought they had reached the limits.  “The anaesthetist assured us, ‘Lucia is still responding.’  So we carried on.  Lucia led us through.  Her name means Light, you know? She was our light in there,” they told us.

In the continuing quality care that followed, one after another of that team told Lucia, and the rest of us, how much that experience meant to them, how astonished they were by Lucia, and that lessons were learned, not from something that went wrong, but from something that, against all odds, seemed to go right.

Months later, the story turned.  Now we write these blogs in Lucia’s place.  But in all the entangled emotions, thoughts and memories that this day brings, there shines a thread of gratitude, for excellence. In the hospital theatre, in those teams and, always, in Lucia.

Saying thank you will not wear out, and there is still so much to learn…