Category Archives: Co-production

Diagnosis on the doormat?

image.jpegMore tales of patient-centred carelessness

I wrote a few weeks ago about the rather shoddy way in which I discovered that I’d got cancer again – because a lowly admin lass (who hadn’t got a clue what she was actually communicating) had shunted me into a clearly-overcrowded and foreshortened clinic, clearly because there was an issue to discuss.

Since then I’ve been regaled with other people’s stories about how they, too, learned in shocking ways that they’d got cancer. Here are some of them, below, in their own words.

Health care professionals, read and learn. Consider how sheer carelessness,  system-led processes, and sometimes even misplaced and cack-handed compassion can lead to casual devastation.

Kate – The ‘not even talking about it’ disclosure
I found out the first time after a routine mammogram led to a protracted wait in the waiting room, completely unaware of what was wrong but with an increasing sense of foreboding. And I actually found out I was in trouble when a junior technician came out to the waiting area and asked me — just me, not anyone else waiting — if I wanted a cup of tea.

These moments are entirely unambiguous to patients and it really struck me how untrained so many staff are for that moment of accidental but deniable disclosure.

So, like ‘just phoning to move my appointment’, this is another example of how you can’t actually ‘not communicate’. This is people just not understanding that they can communicate whole worlds without necessarily mentioning the subject at all, without saying anything about the issue at hand.

Annie – The ‘death sentence on your doormat’ disclosure

(I know, I know, I know, that a cancer diagnosis isn’t a death sentence, so forgive the hyperbole, but I honestly think that for most people, hearing for the first time that they have cancer, it feels like one.)

This reminded me of when I was waiting for the results of my breast lump biopsy.
‘What happens now?’ I asked.
‘Oh, if everything’s OK we’ll ring you,’ she says. ‘If not, we will send you an appointment letter.’
I walked away thinking ‘Do they think I’m feckin’ stupid? That I can’t work out what the phone call vs the letter means?’
We have never listened so hard for the phone to ring, nor stayed in, just in case it did.
Fortunately, it did.

So, just to be absolutely clear here. Imagine how it feels: you haven’t had a call from the hospital, and then a letter from the hospital drops on your doormat.
It might as well have a big 2-inch high CANCER stamp on the outside of the envelope!! Because you didn’t get the phone call and this can only mean one thing!

And it doesn’t say ‘We’re a bit worried about you’. It doesn’t say ‘Sorry that this isn’t as straightforward as you’d have liked it to be.’ It can’t say ‘Sit down while we talk about this, because this is probably one of the hardest bits of news you’ve ever had to process.’ It is so heartless, so mundane, so empty of information, so full of dread. It says ‘An appointment has been made for you in Clinic 7 at 2.45pm on Thursday.’

This seems to me the completely appalling thing. It’s a cop-out. It’s ‘just admin information’, but it bears a colossal, and completely unambiguous subtext, just by lying there on your mat.
And then you have to bend down and pick it up. You wouldn’t deliver a death sentence to a war criminal like that – on a bit of paper, on a doormat. YOU HAVE TO BEND DOWN AND PICK IT UP! And, somehow, stand back up again.

Barb – The ‘system doesn’t give a toss’ disclosure
I’d been to-ing and fro-ing with a lot of letters and cancelled appointments about my sore knee, then x-ray’s and scans. Then I got a letter out of the blue, asking me to go to an appointment at the Oncology clinic. No-one, up to that point, had mentioned the C-word, or any possibility that there might be anything sinister going on. I don’t know how I stayed sane in the days up to the appointment.

Doesn’t anyone ever look at an automatic letter they are designing and stop for a second to think: ‘What effect might this have if it landed on my doorstep?’

Sue – The ”Don’t blame me; it’s the process” disclosure

After years of treating haemorrhoids that I was sure weren’t the problem, they said: ‘OK lets have a look –  quick day surgery, and we will cauterise them.’ So, day surgery day arrived, I was first on the list at 8.30 and remember clearly I came round at gone 11.30. I asked the nurse why it was so long when it was only going to be 20 minutes and
she said, ‘Oh they had to do a bit more than they planned,’ (first alert!) but I was discharged home in a couple of hours after the obligatory toast with no further information. That was a Tuesday.

On the Friday I got a call from the Consultant’s secretary: ‘Could I come in on Monday?’ ‘So it’s bad news, then?’ I said. ‘Well, I can’t confirm that by phone.’ In my head this couldn’t be anything but careless confirmation that there was indeed bad news. I arrived on Monday and the consultant said ‘Well, we didn’t expect this from you: you don’t fit our usual picture,’ (or words to that effect), ‘And I guess you’ve worked out you’ve got cancer! That last bit is verbatim – it is ingrained in my memory and I’m sure you get that – like you’ve been thrown against the wall. He said ‘Right, I need you in for surgery. Sign here and come in on Wednesday.’ No question about did I have anyone with me, could I get home alright, no further explanations about where the cancer was, or even what it was. I found all that out later.

But isn’t it a rubbish, rubbish, response?

It can only be justified as being of benefit to the person initiating the call, who doesn’t have to have the difficult conversation. The caller actually communicates the result – without being explicit, but completely unambiguously – while being resolved of all responsibility for its impact.

This, because a rule that says you can’t give this news over the phone. But, clearly,  you’re giving it anyway, just not taking any responsibility.

You can’t give it over the phone because:

  • The person might be on their own.
  • They might faint or become very stressed.
  • They won’t have anyone to talk to and ask questions of (the dreaded ‘nurse in the corner’)

But this way – this careless, callous way – of ‘not giving bad news’, your person might well be on their own, might well faint or have  heart attack, and they still won’t have anyone to talk to.

But, because you haven’t ‘told’ them, just sent a letter, or rung them ‘with an appointment’, it isn’t your fault.

It is.

We are all responsible for patient-centred care.


Co-production: a single-page guide

Co-production,  the best (if most elusive) version of ‘patient involvement’ is, rightly,  gaining ground as an idea.

Get your Co-production Model here!

Cop Mod photo.jpeg

So it’s great news that the excellent Co-production Model, recently launched by the Coalition for Collaborative Care (C4CC) is available for anyone to use and share. Working in true co-productive style, with dozens of partners inside and outside the NHS, the result is a model of simplicity, sense and plain English. And – even better – it isn’t a report or a thesis: it‘s on a  single A4 page! 

In a meagre 300 or so words* it explains:

  • what co-production is,
  • five ‘values and behaviours’ that need to be present in an organisation to make co-production possible,
  • seven steps to implement it.

It has already been received with huge enthusiasm in several places where it’s been presented, which seems to be to reflect the reality of where we are with co-production – that the argument ‘for’ has largely been won, but that people aren’t sure how to do it, or where to start.

The rightness of doing co-production

In fact, there is a growing acknowledgement that co-production is simply the right thing to do, both for people who use services and for their families. But it also makes operational sense. This is true for lots of reasons, but here are the three biggies (and some slogans!).

First, it’s better for people when they are  actively involved in their care. After all, people with long-term conditions are probably best-placed to know what services they want and need, and they can contribute massively to their proper design and planning.

Slogan alert #1: Plan with us, not for us. 

Second, you get better outcomes. Individually, patients will understand more, ‘comply’ more, and be healthier. At a strategic level, when systems and processes are designed with users, you get to the right solution quicker, and with fewer iterations. Then, once in place, the new products and services work better, faster, and with fewer revisions.

Slogan alert #2: We know things you don’t know; we see things you don’t see.

Slogan alert #3: As ‘expert advisory groups’ go, if people who use services didn’t exist, you’d have to invent us.

Third, it’s better for health care professionals. Usually a bit scared and sceptical at first, the experience of the C4CC Co-production group, and hundred of other ‘users’ working with professionals around the country, is that once professionals have co-produced properly, they are bitten by the bug, and become serious advocates of the methodology. Pathways work better, systems work, and job satisfaction goes up.

Slogan alert #4: Co-production helps us to prioritise, and that’s better for us all.

How to do it and where to start

The interest shown in discussions about co-production, and early reactions to the Co-production Model, suggest that there is a huge number of professionals out there who really want to work using co-production, but aren’t sure how to go about it. (Although the oft-cited difficulty in ‘finding patients’, frankly seems a bit weird to me…)

Co-production is the easiest thing in the world to do badly, and really hard to get right. But the basic principles aren’t difficult, and the Co-production Model suggests a methodology that is simple and straightforward.

It’s a great place to start. And it’ll be followed at the end of summer with some case studies that will help further to address some of the practicalities.

The chances are you won’t get it right the first time, but don’t let that stop you.

Slogan alert #5: Don’t wait until the plan is perfect. Make a start, and fix it as you go along.

And here it is, to download and share!

Download the The Co-production Model here. Or read more (and download it) at the Coalition for Collaborative Care’s website.

* Beaten into a cocked hat by the Gettysburg address, one of the finest examples of concise writing ever produced, at just 272 words. We did try.