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!)

 

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…

 

 

There are probably a few too many ornaments and craft things in our house, but most are soaked in memories and won’t get thrown away.  Some originated with the play specialists from times in Birmingham Children’s Hospital (BCH), and their invitation to paint, draw, and imagine, and some of what was created hangs on our Christmas tree each year.

These delightful visitors to the bedside use play to help children (and their families!) feel more comfortable in their environment, express their hopes and fears,  and deal better with the unknown and with what is going on with them.

That’s not unlike another team who find their way to wards and bedsides and who, at their best, also play a part in creating safe space for patients and visitors alike to express the tangled emotions and concerns that being vulnerable can bring.  The multi-faith team of chaplains. Loitering with intent.  Twenty four hours a day.  Seven days a week.  “Available to lift and soothe spirits of our patients, families and staff…in times that are hard and sad, confusing and anxious, and also to celebrate good news and healing.”  And since their purpose is to offer support, it doesn’t matter whether a person is religious or not, whatever their faith is, or isn’t, and “we won’t mention God unless you talk about God first!”

There’s a skill to being around but not being intrusive, available but not disturbing.  A skill to popping a head round the door with or without an appointment, and sensing the moment well enough to offer to stay and chat, or pop back later.  The smiles help.  And, for some of us, even adults in the Children’s Hospital, a chaplain’s outrageously colourful shirt smothered in teddy bear patterns or Christmas motifs was never off-putting.  Quite the opposite, and it’s hard not to crack a smile yourself.

Then the listening ear, and every other gentle, respectful way of reading the patient and the other people in the room, helping trust and respect to grow.  Like the play specialists, some of the best chaplains are those who come to explore things with us and not explain, to invite our thoughts and feelings rather than just give us their own.  It strengthens the experience of respect and dignity, something that can slip away too easily when you’re at the mercy of everybody else’s action and ideas.

In the BCH chapel, as in many more, there is a welcoming space to be.  Somewhere to go in the gaps, day or night.   To think, or try not to think.  A place for tears too, and those silent screams of pain – or joy – silent only out of respect for those around.  A gentle place, with simple things to hold on to when other things are crumbling, changing, frightening.  Like the small basket of pebbles, some marked with words – fear, trust, hope, strength, joy, pain, courage…  Something to hold and focus a thought whatever it may be and wherever it may lead.

Small tealight holders on a side table with slips of paper that may become requests for prayer, for support, gathered at the end of the week and spoken by chaplains in a simple space together as the candles are lit.

A dry tree branch for hanging leaf-shaped cards bearing the names of those we care for, are concerned for, or who have died and whose names are honoured again as they are read by others.

The book at the back of the room for prayers, in any language, addressed to any hearer or none, human or divine; a book which becomes a kind of log for those on prolonged periods in the hospital.  Some trace the stories of others there, sharing their need for compassion and kindness, and a desire to be that for each other.  There is gratitude on many of those pages…

It might sound a bit obvious to say, but there’s great wisdom in being included in what’s happening in your own story, your own healing. It can add to confidence in conversations with the doctors and consultants.  It strengthens the faith we can bring to it all, our faith in the hospital, in the staff who look after us, the family and friends who are with us, in the donors and their precious gift, faith in the kindness of those who care.  Faith in those who are doing and will do their best with skill, wisdom, passion and dedicated attention.

So a thumbs up, a smile, and thanks, to the best of the chaplains, and to all others like them, who keep faith and hope alive…

 

 

 

Pine needles on the floor. Wrapping paper ripped off and tossed aside, or neatly folded for future use. Labels from new clothes.  Potato peel and outer leaves from all those sprouts. Dishes and greasy pans in and around the sink.  All that tidying work that needs doing.  Christmas includes all those messy bits as well as the glitz and glamour.  They can be unpleasant chores left for “somebody else” to do offstage and unnoticed, or shared out and managed with kindness, making the Christmas journey easier for everyone.

The story goes that, during a visit to the NASA Space Centre in 1962, President Kennedy noticed a man carrying a sweeping brush. He went over to the man and introduced himself: “Hi, I’m Jack Kennedy, what are you doing?” The cleaner said: “I’m helping put a man on the moon, Mr President.”  Never “just a cleaner”, he was part of the space team. Every cleaner’s in a story.

A dear friend of ours  is seeing Christmas through in hospital and, as a day began, was not looking forward to unpleasant medication.  Then, a message pinged in from her. “One of my angels in disguise, Jackie the cleaner, came and distracted me as I swallowed it down so only 2 more to go today…”   There’s more, of course: “This angel in disguise also comes and says good morning to me as she starts her day, and farewell at the end of her shift. When she leaves my bedside she always checks there’s nothing else I need that she can help with.  Much more than “just a cleaner”. She is a key to my healing.”

We remember some of those friendly faces from other hospitals, in Belfast, Birmingham and London. Jane, Rachel, Davy, Stefan, others whose names are mislaid in memory but whose kindness isn’t.  The best of them not only kept the wards clean (and changed the bags in those metal bins quietly!), but were always good for a conversation about the world beyond the wards, about their children and grandchildren, their trek to the hospital through the traffic or the snow, shopping and preparing for Christmas, about Strictly Come Dancing (laugh if you must but on many Saturday evenings Strictly proved a welcome distraction, something to look forward to as relief from the daily medical demands.  “Ke-ep dancing!”)

Angels in disguise indeed, with cheery greetings as the light first comes into the cubicle, something “normal” helping patients remember they are people first and always more than patients, with a wider spectrum of life than the necessary focus points in hospital.

And from a retired district nurse who was at the forefront of developing hospice care in N Ireland, we learned that “…cleaners were always involved in the multidisciplinary team’s psychosocial ward rounds at hospices, valuing the information and understanding they gathered while brushing under beds.”  Excellent indeed.

So, if you’re sitting down after tidying up for the umpteenth time, thank you, and especially to those on the frontline of infection control in the wards, thank you for reminders of how extraordinarily valuable the apparently ordinary can be…

It’s Christmas, so there must be an Agatha Christie adventure on the telly – or some other whodunnit, with somebody’s favourite detective tracking down the culprit and the rest of us at home guessing at the solution before it’s all revealed.  Harmless fun.

Today, a thank you to all those who do the detective work of a different kind.  The GP who first spots the clues of something significant that needs more skilled investigation.  The lab technicians reading the blood samples for familiar – or not so familiar – evidence of things that are not the way we want them to be.  The consultants who read the signs in the person in front of them, following first one lead and then another, as many as it takes to get on the right trail and identify what’s doing harm and how it can be caught, stopped.

The patient may also have some hunches about what is happening, reading their own evidence, knowing what the scene usually looks and feels like and how it might now be out of kilter.  A wise detective will recruit all the help they can get and conversations with the patient could provide key pieces of the jigsaw and make the picture clearer.

It  doesn’t always work as it could, for whatever reasons. The system is under ridiculous pressure. Resources  stretched beyond belief, functioning too often on the extra generosity and compassion of committed staff who have already given above and beyond all reasonable time and energy.  And, sometimes, people simply get things wrong.

Yet when this team work well with each other, listening, looking, considering and paying careful, caring attention, incredible scenes can become evident, almost invisible agents identified, tracked, apprehended and stopped.  Harm can be reduced and, at best, reversed and full lives restored and set free again.

Those forensic detectives who can track and identify a culprit years after the crime through the tiniest samples of DNA, have their match in many of our hospitals.  And, in many cases, they both have continually improving technology to help.

Pause Agatha for a moment while we give heartfelt thanks to the less televised detectives of health care…from the GP’s surgery all along the pathway as far as it needs to go…they are working on it today…essential team members in the organ transplant universe.

 

 

Somewhere, a child has unwrapped a gift this Christmas of a doctor and nurses kit, complete with uniform, junior stethoscope, thermometer, blood pressure monitor, ear scope, and the rest of the trappings.

Maybe it’s just a fun present for the moment.  Of course, it may be an adult’s fantasy of seeing their child grow up to be a skilled and respected member of the medical profession, benevolently dispensing care and treatment to all-comers.

Or, much better, it may be an acknowledgement of a real and growing childhood desire of a passion for the caring professions.  One that may stick, through school and all the demands of getting onto an apprenticeship course or into University.  Through the teaching hospitals and specialist training, the whole thing.  Sticking with it and being true to the desire within to care.

A student nurse was having a blood test herself.  As she saw the tube filling with blood, she fainted.  When she came to, the phlebotomist suggested she might need to reconsider her choice of career.  Fortunately for many, she didn’t.  Instead, after twenty years of professional nursing, Christie Watson wrote her beautiful book, “The language of kindness.”

It is packed with honesty and insight, deep humour and frequent tears.  Not least as she opens the story of her own father’s palliative care and Cheryl, the nurse who became his closest friend and companion in his last days.  A story of profound kindness that could be repeated many times from within the profession.

Like the nurse who explained to us why she chose to work in ICU and wouldn’t want to be anywhere else.  “I was working on a very busy ward and a patient asked me to get her some toilet paper.  I was distracted by other demands and didn’t get back to her.  I only remembered on my way home from my shift.  So I prefer ICU.  Its busy, intense, but now I can usually give concentrated care to one, or two, patients.  That’s what I came into nursing to do.”

When Live Loudly Donate Proudly’s Lucia was recovering from her first liver transplant, amid all the others providing excellent care was a physiotherapist. While Lucia worked on her exercises and we chatted with the physio, to our mutual surprise, we discovered that we had met her many years earlier when, as a young girl, she had been part of a group of young people known to Lucia’s dad.  He had no clues then that she would eventually play a key part in Lucia’s healing, or that the physio would be instrumental in Lucia becoming part of the Birmingham Children’s Hospital Transplant Games team, profoundly nurturing her mental health and self-confidence.

What if some of those children who opened their presents a few days ago, maybe some whom we know ourselves, grow up to be the cardiologists, anaesthetists, physiotherapists, psychologists, ICU nurses who will care for us, or for our children?  What might we do to make their pathway smoother to being the best they could be, for their sake and for ours?

Thank you to those who start young, for whatever catches your attention and holds your commitment to the caring profession.  Stick at it, we really need you, and nothing beats learning the ‘language of kindness’…

 

Christmas can be a real nest of tangled expectations, experiences and emotions.  So many Christmas movies (not knocking them all!) stick to the same formula, the same stories even, suggesting we’re all looking for pretty much the same thing at this time of the year.  Couldn’t be further from the truth.

Not going to untangle it here, just trying to tug on a few strands attached to gratitude.  In the universe of organ transplants, gratitude will always have, in its deepest roots, awareness of the donors.  In most, not all, cases, there are families whose pride at being able to help others may be wrapped in layers of loss that can make anniversaries, and special occasions like Christmas, more tearful than any Christmas movie.  That’s what makes the gratitude even deeper for those who receive this gift of life.  It is such a costly gift.

Anyone who has had a transplant, or loves someone who has, will be aware of gratitude to organ donors and their families, and for all those tiny things we walk past and take for granted…

To leave hospital again and go home.

To feel the fresh air, feel the rain and the wind.

To breathe, to feel, to see, to move, to think, to smile.  To be.

To gaze into space with renewed wonder, to sense the energy in waves on the shore.

The gift of extra time with loved ones. For their company, their conversations, the holidays, the parties, the walks on the beach, the nights in, the smiles and laughter, hugs and kisses, promises and plans.

The fresh chances, opportunities, possibilities that pressing that reset button can bring to life, and to living fully in every second.  Not frantically, or even busily, but fully, knowing the value of days, hours and minutes, that could have been very different, for everybody.

Gratitude that grows from the generosity of someone saying yes to organ donation, and from a whole web of others who play a part.

Amid the tangle and clutter of Christmas, over the next few days, we’ll make some space for thoughts of those who make this incredible world of organ donation such a wonderful opportunity, such a precious gift…