Category Archives: patient involvement

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.


Patient involvement – still some way short of a good walk

A good thing, but …

The NHS is talking a good talk about patient involvement, and it’s great that the idea is gaining such acceptance. But the mechanics of implementing it are still falling well short of a good walk.

I’ve been exasperated by two lots of communication recently related to patient involvement. Probably out of all proportion, you’ll think, but I’m SO tired of NHS England talking up patient involvement and then just doing it in a very half-arsed way.

Back-office silliness undermining good intentions

The first was a couple of months ago when I was invited to speak at a conference which was, splendidly, dedicated to ‘empowering patients to manage their long-term conditions’. It promised to ‘go beyond the usual rhetoric’ and to take a ‘holistic, person-centred approach…’, and even constituted a People’s Panel to ensure discussions were centred on service users, and to hold the conference to account.

So, anyway, you’d assume that it would have its patient involvement sorted.

So I was a bit surprised to get an email one day from the organisers asking me to let them know my travel requirements by close of play so they could book them. I was out, and busy with – yer know – life, so emailed back to say I’d sort myself out and would presumably be able to claim afterwards. No, they wanted to make the arrangements, and could I send them details. Well, no I just couldn’t.

I pointed out that I’d need to organise my own transport – I live deep in rural Beds, and travel isn’t straightforward at the best of times, but I also need to sort assistance for myself on the train with the splendid people at First Capital Connect (good) and their S-L-O-W and cranky system (bad). When they conceded on this, they then insisted I do it that day, right then, so that I could tell them what it would cost. Well, no I still couldn’t, for the same reasons I couldn’t fulfil the original demand. Did they think I was making it up the first time?

So, trying to help, I offered to provide a quick estimate of the cost, based on previous experience. I explained that I’d use the bus in London (free, no expense to them, so yippee), unless it was really tipping down, in which case I might take a taxi. Your legs get really wet in the rain if you’re sitting down. So I fired this off from the train, only to have some embryonic management trainee email me twice in quick succession to ask:

  1. whether I ‘was sure that the train station I’d specified was the nearest to where I live?’ Sighhhh. Really?
  2. and, whether I couldn’t use the tube in London? As though I didn’t know there were tubes, or hadn’t considered it. Or maybe I’d never been to Lunnon before? Actually using a wheelchair puts the vast bulk of the tube system utterly off limits. [1]

This was all a bit ironic, considering that the conference – and pardon me if I shout here – WAS ABOUT PATIENT CENTREDNESS!! I was so incensed by these emails, this querying of my wits and my integrity, that I came within a hair’s breadth of pulling out altogether.

Now, I may have a short fuse, but this stuff matters. Patient involvement, patient centredness, call it what you will, includes listening to, respecting, hearing, integrating patients. Then this? An assumption by the organisers that I’m dim, that I wasn’t used to organising myself, didn’t know where my local trains station was. Also – and you get this quite often – that I had an empty, barren life in which I could drop whatever I was doing and respond to emails instantly with detailed requirements. 

And all this hassle, so that I can give my time voluntarily, freely, to support their stupid conference? It beggars belief.

Actually the conference was great.

Rubbish emails

Then on Tuesday I opened an email from an NHS organisation. (Nope, dangle me from the ceiling, I still won’t say.)

It invited me to apply to be a Patient Champion, and to sit on a panel validating the assessment of young NHS professionals on a training programme. The email was very annoying for a number of reasons, not least by patronisingly assuming that I’d get excited about potentially being designated a ‘Champion’. What? Do they think I’m six?

The email went to great pains to assure me how seriously the organisation took patient participation’; how they are looking to ‘ensure that patients are equal partners blah blah…’

However, while trying to reassure me about how seriously it took our participation, it simultaneously failed in several ways, and I can’t tell you how much I was put off by the following:

  1. It didn’t have a signature at the end, so came only from a mysterious ‘administrator’. So that was friendly.
  2. It was sent mid afternoon on Monday, with a closing date for applications on Sunday. Because, of course, patients-users-carers aren’t doing anything with their crap lives except watching Homes Under the Hammer, and can leap to this stuff. But six days seems like short notice to me, and I’m really not sure if I can fit it in. And you can’t help wondering if the HCPs involved only had six days’ notice.
  3. We were asked to follow the application instructions in the attachments, and to ‘send in the application form below.’. But in fact there wasn’t an application form, so how does one apply, actually?

I was at a meeting of my regionally based Cancer Partnership Group today, and several people I spoke to had had the email, opened it and ditched because it was a mess.

The Beef

The thing is that patient involvement, and patient-centred self care etc, isn’t just a good idea, it’s an absolute necessity for lots of reasons; it’s going to be the only thing that stops health provision from imploding all over the western world. It has to be done, and there are brilliant people in the NHS working hard to try and make it work. Hats off to the folks at the Patient and Public Voice Team, and to those at the Coalition for Collaborative Care, and in the East of England for busting guts to make this stuff real.

But lots of people are paying lip service. It isn’t good enough to bleat on about the importance of the patient voice, constantly to harp about the crucial input and contribution from patients, without putting in place the appropriate mechanisms and systems (including expense and travel systems) that actually allow patients and carers to participate and engage.

It isn’t enough to remember at the last minute to ‘get a couple of patients along’ and wheel them out as proof that you’re listening. If your systems don’t work, if you don’t give credence to what you’re being told, if you don’t give time and notice in which to act and prepare, you aren’t.

Believe me, I know where my nearest station is.

[1] For those with time on their hands, try plotting the journey from Custom House to Southfields using TfL’s splendid step-free tube map. The map is splendid, the tube ain’t.