Carol Munt: The impact and value of involvement and co-production

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Carol Munt, Patient Leader, discusses how co-production has improved experience and outcomes for patients and service users.

This presentation was filmed at our conference, How to involve and co-produce with patients and communities, on 1 November 2016.

Transcript

I am one the health service general’s top fifty patient leaders. There are 49 other people on that list and I think that it could have been the top five hundred because there are lots of people out there that have done far more than I have who are far more deserving of being listed in the last 50.

And if you think about it, co-production’s great, don’t get me wrong, I think it really is great, but equally I think we’ve got to just step back a wee bit and look at what you guys have achieved on your own, and also look at what patient leaders have achieved on their own.

Most of the people on that patient leader list, most of the patient leaders that you read about, you read about them because of they’ve done on their own. They’ve set up charities, they’ve campaigned for changes, they’ve been responsible for innovative ideas. Think of Michael Serris for example, who has Crohn’s disease and who invented a thing that made it so much easier for him to have his bag attached.  So that wouldn’t have happened, co-production wise, yeah it would have done but it might have taken a lot longer.  So that’s another thing that you have to bear in mind.

The other thing about co-production is that you can’t do it without a budget normally, and this is where very often it falls down because we go along with really good ideas and say we’d really like that to be implemented and then told that there’s no money in the kitty and also that to actually involve patients means that you know, we’ve got to pay you so much a day, you know the NHS has supposedly got to pay expenses for travel and actually we don’t have the budget. And then I say something like “but you have the people in to teaching mindfulness last month and that was sort of £9000 just for the day, you know, so kind of like, we’re really cheap for what we’re offering”.

One of the things I was going to say was, I’m looking at you and I’m looking at a room full of absolute expertise, people who are really proud of their profession and who actually, with the exception of one person I can see who no names, no pat drill, probably really good at what they do, I think Dom knows who I’m looking at!

[Laughter]

But that’s not the end of the story, because most of you have got partners or relatives or whatever. So if we took all of you guys out of the room and you were allowed to nominate somebody that you know to come and sit in the room instead of you, we’d have another room full of expertise.  So surely somewhere down the line, you’ve got to think logically about actually merging those two lots of expertise together to get things done, maybe to get things done quicker.  Maybe it’s you know, that some people have got a different viewpoint, whatever, but nobody out there is going to come along and say I’ve got nothing to offer, because everybody’s got something to offer.

But I’d just like to go on to, this is, pretty much sums it up doesn’t it, this slide. It isn’t rocket science.  What we did in Oxford was to get together people who were in the health service who wanted to do co-production and people who were in the community who wanted to do co-production and strangely enough we needed to put them in the same room together so they’d end up talking the same language.  Now you might think that that’s quite weird, but actually it isn’t.  But the great thing was, we didn’t have any badges for anybody so you were in a room, with other people, you didn’t really know whether they were health professionals or members of the public and then you were given a topic of conversation to chat about, and initially it was a bit awkward because nobody knew anybody, but after 10, 20 minutes, everybody was chatting away and by the end of the day you couldn’t stop them.  So, that’s another thing that you need to take on board.  It’s okay training national health staff with a leadership academy, and it’s okay to train patients on their own, but actually it makes much more sense to train people together because at the end of the day you want the same thing to happen.

So, this is quite an interesting comment, “leadership is an action not a position”. And I think you need to look at the fact that what you do in life, it really doesn’t matter who gets the credit for it, really doesn’t matter who leads it, as long as the end result is what everybody wants, then that’s quite important.

I’ll give you some examples of what’s really worked well. There’s a scheme called Health Makers, that started off in a clinical commissioning group in East Berkshire.  The lay member who has a long term condition herself, decided that people with long term conditions, it’s quite a lonely place to be.  I’ve got a long term condition, I’ve got narcolepsy and cataplexy, it’s quite rare and therefore from the point of view of having peer group or peer support, that’s kind of really difficult, because there aren’t that many people who have it.  And plus the fact that cataplexy is one of those things that you find in a positon where I’m subjected to an excessive emotion, that’s either laughter, anger, sadness, fear, whatever, sex as well but those days are long gone.

[Laughter]

I said that on the radio actually and I was told afterwards that you shouldn’t have said that because you’re indicating that people of a certain age give it up. And I said “no actually, it was voluntary but there you go”.

[Laughter]

But you know the laughter of it, is the bit that gets me. I mean my grandsons are terrible, they just make me laugh all the time.  They’re teenagers, I mean I suppose they could make me cross all the time but they don’t, they make me laugh, so that does tend to be a bit of a problem.  But as I say, people that have long term conditions, it is lonely.  I mean I’m sure you all know that.

So Health Makers was an idea to say “right let’s get people with long term conditions together, let’s teach them how to deal with their condition, how to manage it better, but also how to give peer support to the person next to them who’s got a long term condition”. And within a short period of time, it really took off.  50 people have been through this and have really benefited to the extent that their medication has changed, their lifestyle has changed and everything else.  It’s probably, I’ve been told not to say this, but then that’s the worst thing to say to me, it’s going to be put into one of these, it’s secret tranformating plans or sustainable, I can’t remember which.

[Laughter]

I think it’s sustainable, isn’t it? Hmm.  Enough said there.  But anyway, that’s how much it’s caught on.

The other thing is that they were also taught, empowered I suppose, rather than taught, confidence to express their views and how to get that across in meetings. Particularly bearing in mind that they would be going along maybe to a clinical commissioning group or to a group at the hospital where they were talking to people from the health side of things.  They were given, the indication of how you can change current thinking and change it without appearing to be critical or controversial.  Critical friend is the terminology that’s used very often, and I think that’s actually quite a good thing to say.

I like this slide, it’s amazing how much you can accomplish when it doesn’t matter who gets the credit. And I think that’s a very important thing to remember, because at the end of the day, whatever you’re doing, it’s everybody in a team that’s actually doing the work and getting there.

Taking patient experience to the next level. This is about co-production.  This was something that I worked on last year.  It was commissioned by the MHS, the project was to find out if patients and carers can make a difference in the attention that experience of care gets alongside clinical effectiveness and safety.

I do wonder why everything has to be stretched out, why couldn’t it just have been actually what we wanted to know was whether it worked or not, you know, but we have to complicate the issues sometimes.

So a project took place, commissioned by the NHS as I say, and patient leaders and health staff were together, we looked at some of the things that were happening across the country. We looked at whether or not there had been any help for patients to come forward and for the ideas to be embraced.  It was basically to see whether or not patient leaders can influence the NHS and also it was to see what the NHS needed to do to actually make this work, because it is basically a change of culture, there’s no question about that.  And it was an interesting project.  We asked 20 odd people who submitted projects to actually go into in much more detail and tell us how they worked, whether they had any problems getting things adopted, whether they had any problems getting their message across to people or whatever, but always at the back of my mind is the thing that there is actually a statutory duty for people to be involved in things that the NHS do.  There is a statutory duty to involve the public in commissioning and planning, which is probably why so many members of the public have been involved in the whatsit plans but maybe I’m wrong there.

The projects that were mentioned, there was a clinical commissioning group up in the Midlands and they had a group of teenagers who were being treated by children and adult mental health services, commonly known as CAMHS and they weren’t happy with the service that they were being provided with. So what they did, was to campaign the clinical commissioning group commissioner that was responsible for their particular service and say that people either you commissioned, we don’t like them, they don’t like us, they don’t seem to have any empathy with us or whatever, we reckon we can do a better job.

So they were told that they could put down a plan of what they wanted. They could basically draw up a document that people could then tender for and one of the ways that the tenders was marked was that 20% of the marking had to be given by this patient group.  So, basically they were almost commissioning their own service which makes sense really.  They knew what they wanted, they knew what would work, what wouldn’t.

In another case a group of patients were given £10,000 by the hospital board to set up a training programme so that more patients could come into the hospital, learn about the way the hospital was run and then be able to sit on various clinical groups throughout the hospital to actually give input.

And you can say to yourself why do you really need to do that, and I’ll give you one example. I was on a clinical group in NHS Thames valley and we were talking about stroke and we were talking about pneumatic stocking and they’d had an enquiry in from a hospital that was trialling them saying that they wanted more stockings because when patients were discharged from the stroke unit onto the ward, they were taking the stockings with them, and so I said “well why do they need them? They need pneumatic stockings to make sure they’re not going to get a deep vein thrombosis because they’re not moving then they shouldn’t have been discharged from the stroke unit.  And if they’re discharged from the stroke unit then obviously they’re mobile, therefore they don’t need the stockings, they need physio” So bearing in mind that okay I’ve got a clinical background, some other people might not have, but anybody that’s going to be on one of those groups is going to be on there because that’s their passion, that’s what they really want to have an input into it.

A friend of mine who has a particular blood condition, has been involved in a lot of trials. She’s been involved in a lot of research, and she’s more expert on her condition than any of the experts in the room that she’s talking to, simply because she’s got the time to devote to doing the research, it’s like me with narcolepsy, I know more about narcolepsy and cataplexy than any of the consultants that I’ve seen, which is why I’ve been interviewed on radio and on TV about it because, you know, it’s one of those things if you live with it every darn day of the week, 24 hours a day, you’re going to end up knowing a bit about it, and the people that you’re talking to, have got to know about 150 other conditions, so obviously they’re not going to be quite as expert.

So I think co-production, to me, I’m kind of wondering why I’m standing up here talking to you about it, because surely we should just be doing it. Isn’t it something that’s natural, isn’t it something that obviously has benefits, I’m still not quite sure why in 2016 two years after the five year full  review was put forward where it said that patients have got to be involved or the public’s got to be involved in co-commissioning and all the rest of it, we’re still talking about it, we’re still trying to justify why it should happen and I would love to hear from anybody in the audience when it comes to question time, I would love to hear a really good reason why it isn’t being done, because if you look at fab NHS stuff, their website and see some of the amazing projects that have been put on there, most of which have come about because of patient involvement.

So I’m not bossy, I have skills and I’m very good in meetings, I kind of put the stick down so thank you very much.

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