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.