Category Archives: person-centred care

Cancer again, and finding out by accident

A week ago I had a completely appalling conversation. Short, but devastating. I suspect it’s something that happens fairly frequently. As an indicator of where we are with person-centred care, and ‘great conversations’, it leaves a little to be desired. It went like this.image

Last autumn, after a regular scan and Oncology appointment, we set a date for the next appointment. I’ve had lots of scans since my first diagnosis in 2001 (50+), so we set a bigger interval than usual, and the appointment was made for August 5th. A couple of months ago the CT date came through and it was for Friday July 1st, five weeks before the appointment with the consultant.

So, I had the scan at the beginning of July, and I got a call week later from the Oncolcogist’s secretary, asking would I like to come in on July 15th, instead of waiting until August 5th? This set alarm bells ringing, so I asked:  ‘Should I be concerned about the appointment being brought forward?’ ‘Oh, no,’ said the Oncolcogist’s secretary, ‘we haven’t had the report yet.’

Relieved, and re-assured, I didn’t pursue this, and assumed that someone somewhere had noticed the 5-week gap. So we negotiated a date for July 15th, at 4pm, at the end of a long Friday afternoon clinic.

So far so good.

The conversation

On the Monday – the next working day – it all went pear-shaped. I got a call late morning, from a young women, from admin: ‘I understand that a colleague called you on Friday to arrange an appointment for 4pm this coming Friday?’

Me: ‘Yes…’

‘Well, the doctor now has to leave at 2.30pm…’

Now, there wasn’t actually a break in the conversation at this point, but in Fiona World, time stopped and in my head I was shouting: ‘If the doctor has to leave early, bounce my appointment. Let it be put back a couple of weeks. Please let it not be a priority. Bounce me, bounce me, bounce me.’

‘So…’ she said, ‘Could you come in at 2 o’clock so that the doctor can see you?’

Shit. So, really not ‘bounceable’. I had already (and I think innocently) been jemmied into the back end of a busy Friday afternoon clinic. Now the busy clinic was being curtailed, and loads of people would be getting postponed, moved, cancelled. And I – the Johnny-come-lately who wasn’t originally going to be seen until August – was suddenly the appalled owner of  one of a tiny handful of ‘golden tickets.’

I knew there was no point trying to get any more info or reassurance out of the young woman, who had clearly been given a task and a list, and had neither the knowledge nor the authority to disclose anything further. I didn’t try.

So I accepted the appointment. She said something like ‘That’s lovely then. Good bye.’

And that was that.

There isn’t a cancer patient in the world who wouldn’t jump to the same conclusion I did: that the scan result was ‘significant’. Discussions had to be had. Possibilities weighed up. Plans needed to be made. Clearly my renal cancer had returned.

The consequence of the call

How can this happen? How can anyone think that this is a good way of getting information to a patient? A useful conversation to have with a patient? And hasn’t anyone considered what this looks like from the patient perspective?

I – we, thank goodness – were left to sit out four days until the appointment, with no option but to speculate on the precise scale of the shit-storm that was about to be visited on us. You can imagine what was going throug our heads: from the worst – untreatable tumours everywhere, through more ‘challenging’ or multiple tumours in my bones/head/liver; and difficult/risky surgery (again)  followed by lots of shite; down to the best outcome in this surreal world – a single lesion that’s reasonably easily-get-at-able.

The level of completely unintentional carelessness that this conversation emelodies is difficult to describe.

This is an example not of ‘person-centred care’ but something you could only call ‘patient-orientated carelessness‘.

  • Either no-one considered the effect this type of conversation would have on a patient, which you could characterise as a ‘not thinking’, ‘careless’ type of carelessness. Like teenagers with a stash of dirty plates in their bedrooms, because it just hasn’t occurred to them to bring the stuff downstairs. No-one had even considered what impact the conversation might have on a patient.
  • Or the effect was considered, but no one thought it mattered, which amounts to an actual ‘lack-of care’ kind of carelessness. Worse, in fact.

But either way, I t’s actually a complete absence of care, or of caring.

The rational for the process

I completely understand the policy that says that you don’t want to impart bad news to a patient over the phone – distressed patients, no support, no-one with them. That you really want a proper conversation in appropriate surroundings with support and information on hand.

But the way that this was done – and I’m sure this wasn’t a rare occurrence – meant that I might as well have been phoned with the stark news. Even the most difficult conversation with an oncologist or a nurse over the phone has to be better than effectively getting the same news from a poor lass in admin, via a conversation about appointment times.

Because the way that this was done meant that I was, effectively given the bad news, but accidentally, by a poor lass from admin who almost certainly had no idea what the conversation meant at my end of the phone line.

So I got the bad news anyway, by accident, without any input from a professional, or any support. Lose-lose.

To reiterate, it was perfectly clear and unambiguous to me what the call meant. But the system, the process, the pathway, maintains a pretence that it’s ‘just a call about an appointment time’.

Does the system think I haven’t got a brain???  That I can’t put two and two together?

What’s the solution?

So how should we be reallocating and prioritising appointments without letting the cat out of the bag? As far as I can see, the only solution is to ensure that all patients are seen in a timely way after a scan, so that no-one – regardless of the outcome – has to be ‘brought forward’ and alarmed in the process.

The result of the scan

Yeah, my cancer has recurred. It wasn’t entirely unexpected, because we’ve always known the cancer – characterised as ‘oligometastatic’ – was more than likely to come back and bite me. It’s a small-ish lesion, just one (at the time of writing, at least), in my right, remaining, kidney. It’s one of the strange things about Cancer World (CancerIsUs?) that it comes as a relief when it looks as though there’s only one tumour.

We’re probably going to blast it, in a process called pulsed radiofrequency ablation. Should be do-able. Shouldn’t be as bad as the last go-round’, which involved a Whipple’s. Then we go back to scanning until the next little fecker turns up.

 

 

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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.