Mandy shares her experience of being a co-producer, made it also talks about how coproduction really makes a difference and there is important on so many levels. 

death. Could you introduce yourself? Okay, so my name is Mandy Zenko, and I am involved in co production because my son has cystic fibrosis, and I've been he's kept 21 years, although he's now managing that concern. Um, yeah. So thanks, Mandy

I was wondering if you could share with me an experience that you've had about co production. I've had lots of experiences of different levels of co production. Um, some have been really good examples of genuine coproduction

Some have been kind of phone co production where it's been fake co production, Um, and one that I kind of want to talk about is where I was a member of the Patient care of reference group for the Academy of Medical Sciences in 2020 when they were developing their winter report for the government about covid and about the winter challenges that were coming up from, um and I was co chair of the Patient care of reference group, and we it was all very, very sudden that we got involved. The whole project was very short term, very quick. Um, and we didn't have a lot of time

They didn't have a lot of time either. So it wasn't that they didn't involved at the beginning is that they didn't have a lot of time anyway. And so we had meetings as a reference group, and then myself and the other co chair would feed back to the main policy group

But the biggest bit of co production. That was the fact that the Academy of Medical Sciences encouraged us as a co production group, to write our own report that was then attached to their report. So, um, they facilitated that they gave us time and administrative assistance, and they genuinely, genuinely wanted us to be totally open and transparent about what we want to say

And it was a very quick turnaround, which we managed, Um, and it was then actually attached to the main report. So it's not as though it was hard to find, and it was just an appendix. Um, it was attached to this official report that apparently was then, um, shaken by Kier Starmer in the House of Commons one day when he was referring to it one day in the House of Commons

That sounds like a really good example of even when the time is you can do really good coproduction. Yes, absolutely. It was It was partly because the organisation, the team that were helping us was, were so determined to help us do it

You know, they facilitated extra meetings. They they gave us time to, um, to kind of exchange ideas. Uh, you know, outside of meetings, they just did everything they could to help us achieve that

That sounds like a really important piece of work as well. So I'm wondering about the kind of impact that working network had. Maybe on you may be on organisations or societies

Like what kind of impact you think it had? Yeah, that it's hard. It's hard to say, isn't it? Because, you know, the fact that we wrote something our perspective was then attached to an official government document Feels like that's an impact in itself that was, um, out there in that forum. But obviously the audience for it is quite restricted

So, you know, not it wouldn't be available to most people. Um, it's hard to say the impact that it would have had on any policy making. We were you know, we hoped that the Academy of Medical Sciences report itself would have had an impact on policy making

But that's really hard to tell. Um, and But I think I think, as a group it had an impact on us because we were so amazed and motivated by how we managed to achieve it and how we were supported in achieving that, but by an organisation that you know could appear at first glance to be quite bureaucratic and quite, you know, scientifically Academy of Medical Sciences. But, um, you know, we were so impressed by the support that we felt motivate really motivated us

And I think that motivation for a lot of us has carried on, actually. So my next question would you talked about different types of co production you said about, like, real okay production. So how does coproduction make you personally feel what feelings come up with a production? So it's to me

It feels like a right. It's a right. It's almost It's almost like an equality issue that I feel I'm entitled to, and I actually I always kind of related to things like the suffragette movement, the women's movement, which I feel very strongly about because of my agent, Um, and that it's It's something that we is ethically and morally should be expected

Baby, when I'm involving good co production Oh, I feel valued and, um equal. But when I'm in situations where the co production isn't working or isn't equal isn't genuine, um, it does. It does kind of I end up feeling I'm gonna say inferior

But that's, um Yeah, I suppose I end up feeling that I'm not getting a fair chance at something and I'm not. And that's then gonna probably impact on my life. So if we bring that down to a really practical level to do with my son's treatment when he was a child, because of the lack of shared decision making and the lack of co production in his care, we had some very, very dark times where he was suicidal

I was really depressed and because we weren't being listened to about the kind of treatment that the treatment choices that would suit him and suitors of families as a family so that that that lack of co production had quite a devastating, devastating effect on our mental health. Um, so I think that co production, you know, you can't underestimate what an impact it has on people. Are they negatively or positively? Can you share with me some examples of experiences where you have seen the the process of co production has really changed a piece of work that you've been involved in or the outcome

So I'm wondering about that kind of when you co produce having the voice of people in there. How does that change the work? Yeah, so, yes, I can think of quite a few examples actually, where I've been in meetings with organisations. And, um, unfortunately, there was a situation where the person who was leading the project was totally in in in support of co production

But the rest of the people around the table haven't really been briefed about co production and what's going to happen. Um and that resulted in she would say some quite robust discussions, different, very difficult discussions. And but myself and my other colleague, who was there to co produce we stood our ground and, you know, in a very constructive, polite way

And we backed it up with kind of arguments. And as a result of that, um, they the discussion changed completely and the it was almost like a revelation for the other people around the table that this was something they hadn't even considered. And they hadn't, um they weren't aware of the impact and the value of it, and it really changed the whole discussion and really changed the decisions that were made again meeting

And also, I know after that it's also resulted in some changes in, um, practises within that organisation on a on a long term basis. That's a really good example of like how corporate people involved make a difference and it changes. So you spoke about sort of the good side of kay production When it works well, are there any kind of negatives or less positive experiences that you had? Yes, quite a few

Um, so mm, I guess, really, The the most important ones are to do with organisations who who seemed to have what I call a co production ceiling. And it's almost like you can go so far with uh, co production. And but when she when she it's almost like the structure of of some some organisations, some systems are so rigid that it feels almost impossible to penetrate those with the CO production because it's not the individual people that can't cope with it

It's It's almost like the systems around them can't aren't flexible enough to change. And so, um, I think so. I'm trying to think of

So, for instance, if if I've been involved in projects where they want co production in the guidelines for treatment, um so, for instance, about cystic fibrosis. So if I've been involved in drawing up guidelines for the treatment of cystic fibrosis, um, and either attended meetings with other parents or carers about that and we're led to believe that our voice is important and it will be taken into account in the final, um, things that are written So you go there with that face that it's it's going to be recorded and published. Um, but unfortunately, we the document that we came up with this almost like a an easy read lay members document about it, which we thought was really important to share publicly

But it was never published and never shared, and that it felt it felt so wrong, but there was absolutely nothing we could do about it. We have no power over changing that. We have no power over, um, trying to trying to turn that around and so that that felt like we've been misled

And, you know, we knew that lots of other families coping with cystic fibrosis really needed that information that weren't going to get it, and then they wouldn't be. Then, um they wouldn't then have the power of that knowledge to know that they could go to the care centres and say, Well, actually, you know, we we know we should be getting this and we can We can request this so they would never have that power of that knowledge. So why do you personally still co produced despite those? Yeah, I do ask myself that quite a lot because there are still those great moments, those great times where it's worth it and it works

And, you know, like working with the coproduction collective is like, really keeps me going because that's it's continuously genuine co production. And it's having that and and and also the networking between people like yourself and me, who we keep each other going. So I think having that spirit of working together on something that we know is so important, we just can't you can't walk away from it Once you started doing it and you can see how how important it is and how valid it is

It's impossible to walk away from it. Really? Actually, totally. So for you, what is the value of co production? So, for me, the value of co production is for everyone who is affected by any decision for policy or idea has an equal say in that, um to ensure that the needs and there, um and their opinions are are able to shape it equally otherwise, there's a danger that the decisions made will not be relevant to people's lives and will not be be helpful to their lives and can't even be detrimental to that

And I was wondering if you had any top tips to for coproduction success or yeah, so I mean, the main one, I think, is to stop co producing at the very beginning because a lot of organisations seem to make mistake of they don't produce from the start because they say they don't have time or they don't want to co produce until they know what they're doing. But they won't know what they're doing if they're not co producing it, or they might be starting off wrong if they're not co producing. So the tip is to start right at the beginning, even though that's scary

Um, another tip is to do a lot of soul searching and really think about who you're leaving out. And that could be hard to to admit to, um, and to be really clear about supporting place for people that are co producing down to the practicalities of accessibility and payment and, um, digital exclusion. So look at the practicalities of who's who's the barriers and the enablers of the interaction

Do you have anything else you wanted to share with me about co production? I suppose the only thing is that it has completely changed my life, and it's really, um, it's been really good for my mental health because before co producing, I really did feel like I was just a carer, and it wasn't a valued member of society because that was the kind of feedback I was getting from various societal messages. Um, but then when I started co producing things, I realised that my experience was valid in lots of different ways, and it could really help to change things. Thank you

Haven't got any more questions. So if you're happy, I'll stop recording. Okay? Let me stop


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