Finding joy

So this is my first blog for a very, very long time. And it’s been such a long time because I have neither felt like an academic nor a paediatrician for a very long, long time.

I’ve been off work for months. I missed my Christmas on-call (which I was actually looking forward to – things are different in paediatrics). I’ve not been part of a team. I’ve been away from my patients (yes, mine) and my ward. I’ve missed discharges and departures and changeovers…

But I’m back. Very gradually, very gently making my way back. And listening (trying to listen) to the team around me.

My goal, set by my supervisor, is to find the joy in my work.

I like this goal.

I’ve just finished my first weekend on call and I have achieved:

• Fixing a Duplo ambulance and getting a wave from a toddler
• Giving a foot massage
• And getting as many people out for ice cream as possible

That’s a good start for joy

Real life is not straightforward

Life never really turns out the way you expect it to. We know that about jobs, families, relationships… but somehow junior doctor training is supposed to be different. Clinical academic training is supposed to be a straight line where you progress from academic training post to funded fellowships to clinical lectureship posts to senior lectureship to Professor… Junior doctors and medical students are shown these neat charts that show a linear progression along this pathway with very few (tightly controlled) acceptable deviations. This message is reinforced by some seniors who reiterate the message that this is the only way and that any lapses from this path are failures.

The sole purpose of an academic clinical fellowship is to obtain funding for a PhD

Nobody will take you seriously unless you get a personal fellowship from a major funder

Once you leave research, very few people make it back

You have to pick your specific area early on – you can’t just chop and change through our career

I’ve been sat in a few meetings & talks about clinical academic training over the past few weeks as I try to get myself back into the research world (it’s been a busy few months). I’ve heard all of these said by senior academics who are supposed to be encouraging and supporting trainees.

And I’ve been struck by the discordance between the rhetoric and real life. The senior academic clinicians around me that I respect and admire are not people who followed these straight pathways. They haven’t stuck to a single topic or area throughout their careers. Nor have they stayed in research throughout their working lives.

Clinical academics aren’t strange robots who only function in tightly controlled conditions. We don’t suddenly cease if we step outside the research world. We don’t stop thinking or investigating or wanting to change and learn simply because we have gone back to clinical medicine. We are not trapped in a single pathway.

Real life is not linear

Nor is clinical academic training. Making your own path may not be easy or straightforward – but it is certainly not a sign of failure

Remembering

I remember the way you chose different earrings every day – heart-shaped and sparkling. The rainbow ones were your favourites. I hope you were wearing them at the end.

I remember your delight in wordplay; how you each time we met you had a new pun or a truly terrible joke to share.

I remember that you spent that afternoon in the park; feeding the ducks; chasing pigeons in the sunshine

I remember that you beat your brother that evening; that you laughed with glee.

I remember the moment you turned at the door, spreading your palm open, revealing the treasures within. Sharing your last sweet with me – a sticky orange Opal Fruit, the paper sticking to my fingers. You wouldn’t let me “keep it for later”; you had to see me enjoying it.

I remember you made mince pies that year, still warm in their tins. We had to have one each – no sharing allowed. A small smile as crumbs fell into our hands.

You never leave me. I walk past jewellery displays and wonder if you would have chosen this pair or that. I hear new/old jokes and think that sounds like something you would have groaned at. I wonder if you giggled when you ran through the park or were you intent on chasing the birds? The sickly smell of orange sweets and I can see your hands

I may not always remember your name, or why you left. Not for every one of you. Some things fade with time. But I will remember the things that mattered to you. Each of you.

Flowers

The trees are coming into bud. Tiny white flecks, tinged with pink that disappears the harder I look for it.

My sign that Spring is here. That winter is over.

For some reason, I think of these as Adam’s flowers. I don’t know why – perhaps it’s the time of year?  Perhaps it’s their fragility? Each one perfect in a way that I cannot pin down.

Perhaps it has more to do with their persistence. Buffeted by storms, nipped by frost. And yet somehow, enduring. Always with me.

Letting go

Most people will tell you that I can be pretty stubborn at times.  That comes with a lot of positives. If this were a job interview, I’d definitely have it as my response to the classic “what’s your weakness?” question/opportunity to humblebrag.  (“Oh, I never know when to give up; I just keep going ; I guess I’m quite determined really”)

Except it isn’t really like that. Yes, the sheer stubbornness does get me through a lot of things but it also makes life a lot harder.

There are the amusing ones – like the time I got really annoyed with my dad for coming to meet me half-way from the airport because of course I could get my luggage home by myself on the train without getting a taxi (2 suitcases weighing more than me, one rucksack, a poster tube, and a flute. And a bag full of honey and manjar). 

And there are the more annoying ones. Like dragging myself up Stanage Edge this morning via the most circuitous route possible because I’d decided three months ago that I was going to have some time walking in the Peaks and Stanage is always where I start. 

Despite the fact that it’s foggy and misty and grim.

Despite the fact that I really wanted/needed to stay in bed and sleep.

Despite the fact that it turned into a tortuous route because every time I had a choice, I took the path away from the Edge and towards a walk I was much more in the mood for. 

And sometimes it’s holding onto things that I really should have let go of. Redrafting my thesis and realising all the bits that I’ve kept in because I can’t let go of them, not because they add anything to the story. (And yes, all the personal stuff too)

So today is a “red pen” day, crossing out all the bits that are there because I’m stubborn rather than because they’re useful.

Now. Just need to do that with everything else

Simple

Bread & Roses

“We want bread and roses too”

I’ve had “Bread & Roses” stuck in my head for days and days.  I’ve been humming it under my breath, hearing it in my dreams, and singing it at the cat. (The cat has is quite discerning).

Bread & Roses is a poem and protest song from the early 20th century.  It’s been sung by Joan Baez, John Denver, and many more.  It’s basic premise is that it’s not enough to have just the bare bones to survive.  Human beings deserve and are entitled to light and love and hope and joy as well.  We want bread and roses too.

It’s hard to think about the roses when the NHS is struggling for the basics.  When operations are being cancelled, and A&E departments are over-flowing, and wards are under-staffed across the country.  It feels like we’re fighting just for the bread.  Asking for time and people to carry out that work with care and compassion seems like a dream.

But it has to be a dream we keep believing in.  Because it’s not just about providing the basics; it’s not just about bread on the table.  It’s about making sure that we care and listen and have time.

We want bread and roses too

No more

I’m sniping and whining; complaining and moaning. Almost tutting under my breath – “Can’t we do this? Can’t we do that? Can’t we just push a little bit harder, work a little bit longer, stay a little bit later?”

No. 

We are running out of the extra to give. The systems that worked because we just did a little bit more and a little bit more have stretched and stretched to the point where there is no return to baseline. There is no calm before the storm.  There is no chance to take a quick breather and recharge before setting off again.

There is no more to give.

Shared-decision making and my hairdresser

I used to hate having my hair cut.  For years, I would put it off indefinitely, ending up with waist-length hair that was blonde and frazzled at the tips, then cutting it all to a chin-length bob, and waiting for the whole cycle to repeat itself.

Occasionally, I would convince myself that I would try something new.  That I would “do” something with my hair.  But I didn’t speak the language.  I didn’t understand the terms they used or the processes they talked about.  I didn’t know the simple things, like how long an appointment would take.  I couldn’t make decisions about “products” when I didn’t have a clue what that term encompassed, what it meant.  I had shampoo and occasionally conditioner: and some very bad memories of industrial strength hairspray that I’d been covered in for dance shows.

I tried to make it work.  I tried to go to the shiny salon and get the smart haircut, with products and masks and stuff.  I tried to be enthusiastic about the incredibly neat, sleek bob that lasted about 30 minutes before it needed attacking with “product”.  I tried to turn up with magazine clippings (this is pre-smart phone!) and cheated by reading Marie Claire the night before an appointment.

But it wasn’t right.

Eventually, I realised that the problem was not me.  It was that the people I was dealing with.  They were great, fantastic experts in taming strands of keratin into beautiful shapes and textures.  But they weren’t experts in me.  And they didn’t understand that it was my hair, that had to fit into my life.

So, again. I stopped going.

Then about 18 months ago, I tried again.  And I discovered something amazing.  It is possible to find a hairdresser who understands that I don’t have to fit into their systems.  Who is fine with the fact that I will disappear for months on end, and turn up requesting that we cut off 1/2 my hair.  Who explains what he’s doing and why; who gives me choices about how things could work; and who explains the different options and why he’s suggesting one over the other.  He talks me through every step as he washes my hair because he recognises that I am pretty short-sighted and I just do not know what’s going on without my glasses.

That’s not to say that I get what I want.  In fact, it’s quite the opposite.  He’s a fantastic hairdresser because he doesn’t just take my money and produce something that I can’t live with.  (I wanted a streak of purple put into my hair – but we both know that I won’t come back to have it re-touched.)  We don’t cut my hair so that I can’t tie it back for work.  We don’t put in fiddly bits that take too long to sort out in the morning.  We definitely don’t do anything that involves me turning up every 6 – 8 weeks for a trim.  We do what works for me because he took the time to get to know me and to understand what matters to me outside of that salon.

And you know what?:It’s actually quite fun now.  I trust him enough that I turn up (without pictures on my phone) and ask him what he wants to do.  I’ve gone from just having shoulder length mousy brown hair with a centre parting to having bright red streaks (at the bottom so I can grow them out!) and a kind of fringey thing – I still don’t know the “right” words.

Shared decision making. By my hairdresser.

 

 

In the “normal” range

Over the past 4 years, I’ve been trying to write a PhD thesis that’s vaguely related to patient safety, but was really an excuse for me to go to talk to lots of children and families about life. (I got some great book recommendations, a fair few cat snuggles, and some really good apple cake along the way). I’ve also continued working as a paediatric registrar.  And along the way, as this blog has made clear, I’ve had some professional/emotional/personal questions.

But now I have a really simple medical one: how do we use “normal” values if they’re not “normal” for you?

Patient safety initiatives tend to look at deviations from normal – such as a higher than expected mortality rate – and then investigates the reasons for these deviations.  Medical interventions to improve patient safety have tended to do the same, such as asking patients to report deviations from their expected care (“have you washed your hands?”)

One of the big things that’s come out in paediatrics over the past few years is the development of early warning scores.  These use the routine observations that are recorded by healthcare staff (temperature, breathing rate, heart rate), compared to a chart of what the normal values for that age-range are.  Deviations outside the normal range score a point, and a high score acts as an early-warning/alert system that something might be wrong.  There are lots of different variations, but that’s the basic premise.

For many children, that works well.  But what if the charts of “normal” values aren’t the “normal” for that child?  What if your child doesn’t normally get a temperature when they’re unwell?  What if they usually drop their body temperature when they get an infection?  What if their normal body temperature is lower than average, and so when their temperature is in the “normal” range it’s actually not normal for them?

None of these children would raise any alarms on a warning score based solely on “normal” values.

But maybe I’m worrying about nothing, right?  After all, normal values are used because that’s where most people fall.  Most children will have a normal body temperature of 36.5 – 37.3 celsius when they’re well, and will develop a fever with infection.

So, why does it matter?

It matters because the children who don’t follow these “normal” patterns are arguably the most at risk.  They’re the children with complex medical conditions, maybe without a clear diagnosis or idea of how their disease journey will go.  And as healthcare improves, and we see more and more children who’s bodies behave differently, then making sure we don’t miss the warning signs becomes even more important.

 

 

Stating the (not so) obvious

This is a strange, new, and frightening world you have entered.  This was not in the plan.  Nothing in the baby books or parents evenings told you about this. There is no page for this in the red book.

There are machines which beep; attachments and contraptions; devices, syringes, computers.  Some of these we will explain.  We will tell you about the machines which go beep and the medicines we give.  You will learn more in the next few minutes and hours than you ever thought you could.  More than any parent ever wanted to know.

We will try to explain.  We will not.

We will forget to state the obvious.  We forget that what is obvious to us is a new world to you.  Not the medicines and the machines, but the rules that make this little world work.

We will say we have no restrictions on visiting, that you can spend as much time as you like watching your child.  But there will be times when we ask you to leave.  Sometimes you will know this is coming and we will have time to explain.  Sometimes, it will happen in a hurry and we will hustle you out.  The minutes will drag on.

When you finally drag yourself away, we will tell you that we will let you know if anything changes.  But you will come back and see that the numbers on the machines have changed;  there are more syringes than there were an hour ago.

We will tell you that your child needs this level of care.  That they need the machines and the syringes and the monitors.  Then we will move you to another ward.  We will remove the machines and the monitors.

All of this is terrifying.  It is our normal.  We forget that this is not normal, that our world has different rules that make no sense to anyone else.

I’m sorry.

Please help me remember