Why conversations about ‘lived experience’ matter

A Conversation towards a shared understanding 

Written by Celeste Burr-Herrera, Chelsea Mac Donnchadha and Danny Sherwood (Co-create team)

A defining feature of the Mobilising Community Assets to Tackle Health Inequalities (MCA) programme is that each programme centres Lived Experience. MCA is a UK Research and Innovation (UKRI) funded research programme exploring how collaborative community, cultural and nature-based activities can reduce health inequalities in the UK. Co-create are supporting the programme to better understand and embed lived experience across its work. As part of this, we ran a workshop entitled ‘What do we mean by ‘lived experience’? – towards a shared understanding’.

As facilitators of the workshop, we came together to write this blog to reflect on how we plan, learn, and reflect through conversation. For us, conversation isn’t just a tool - it’s a way of working. It’s creative, flexible, open, and always changing. It shapes how we think and learn together, how we understand each other’s experiences and approaches, and how we see the importance of communication in lived experience work.

This blog grew not only from our reflections on the workshop, but also from a shared interest in exploring how connection, collaboration, and curiosity are at the core of what we do. We see this ongoing conversation as central to how lived experience can be part of a broader research approach in creative health.

To reflect that, we chose a conversational format for this blog, using writing prompts which helped to draw out what felt important for us in sharing learning from the workshop. What came through was a conversation - one that mirrors how we work together. When we started, we didn’t know where it would lead, and that uncertainty felt like an important part of the creative process. It allowed room for discovery, for things to unfold naturally, and for collaboration to shape the final output.

We hope that in reading it, you gain some insight into our ways of working, the workshop itself, and the learning that arises through shared conversation. We also hope it resonates with others engaged in lived experience work - within the MCA programme and beyond - and invites further dialogue as part of our ongoing learning.

DS: I was pleased that in the workshop it seemed like most people were happy with the terminology that was being used, or didn't feel that it was that important. I think where people didn't feel like it was so important might have been because the terminology that was being used was sensitive or accurate, or something that people could identify with, because I suspect many people would find it important if it was really badly set.

CBH: Yeah, I know that when I've been part of lived experience groups, the ways that the language means different things to different people can be a point of contention sometimes, and recognising that it can be important to some people, and then also change as well. When it comes to who decides the language, in larger institutions, it adds another layer, which is more about power. That for me feels like the more important area - how the language reflects power dynamics.

CM: I would agree. How we define and what terms we use to understand lived experience also then extends into how we define what the role looks like. People often want “this is exactly what lived experience is, and this is exactly the terms you should use.” But actually, the whole point is that it depends - you need to think about language within the context of the people you're working with and how people want to define themselves.

 I think we should also extend that courtesy to how we define roles and how we use lived experience, and how it's embodied on a project. The purpose should never be to say, “these are the terms you should use,” but to say, “these are some of the terms that can be used or are being used,” and “some of the ways in which lived experience is being embodied on projects.” I think that allows space for that power shift and for people to have more agency to define their own terms, but also define and think about what is possible.

Sometimes, people want an easy answer, but actually, maybe we all need to get better at sitting with the complexity and accepting that there isn't a definitive answer - just considerations as we plan and deliver and engage. Not feeling as though it needs to be a fixed decision, but one that can grow with the project.

DS: I can see why, especially if you're not used to working with lived experience, it would be appealing if we were able to say “this is how you speak about lived experience” and provide a simple guide to language. Because you know that you're involving people who've had life challenges, and don't want to get it wrong. But I think if there's one answer it’s a process, rather than something specific about the language.

CBH: We thought it was really important to have this as the focus of the workshop - to know that it's okay to open these conversations up. Sometimes there’s not space or time to do that, and it's important to acknowledge that it can be complicated.

CM: I would agree that it is about how we create and hold space to have these conversations, whether it's about language, roles, [or] responsibilities. I think it's [about] becoming more comfortable with creating space for those conversations. It's better to have a space where you [can] go, “yeah, that's not right, maybe we dropped the ball, maybe we're a bit off the mark here,” and to be open [to] having that conversation rather than scared to hold that kind of space.

I think we're trying to do that [here] as well. We are trying to think about how we create trust and create spaces where we can have these conversations. And there's something about how we embed or foster an environment, a sense of reflexivity - and this willingness to reflect with the intention of moving forward.

DS: Yeah, very much agree. Something that came through for me in the workshop was that even within specific groups of people we still don't all agree on how we should describe our lived experience. Not only can we not have a single word for all different types of lived experience, but even within groups it is still not possible to say, “when you're working with these type of people, this is the language that will speak to everyone.” So yeah, I feel like the only option is to acknowledge imperfection and messiness and reflect together.

CBH: Yeah. I feel like it's especially important when English isn't people’s first language, and considering how wording translates in different languages. What is the way that we can find a meeting point, finding something that can hold meaning and value for everyone.

DS: I feel like we've worked through a process internally of initially thinking that we would try and decide as a group what words we're going to use for ‘lived experience’. Because of the challenges we’ve been discussing, we haven't decided that together, but because of our role in Mobilising Community Assets we do sometimes need to talk collectively about people with lived experience. So, we default to this term ‘lived experience’ as the least worst option. And I do that in my personal life as well.

It feels important that our final position goes beyond saying that there’s no universal way to talk about lived experience, and offers something to support people to find the language that does feel right in their context.

CM: I think this is where it'd be quite useful to share top considerations, ways that you could begin this conversation or hold that space. “These are the things that have been useful for us to know, but also things we wish we had considered.” Not a definitive guide, but something that gives you some of the tools to figure that out yourself.

CBH: Having the conversations we did in the workshop feels like lots of the pieces of that potential guide have come out.

DS: In this conversation, I think the power thing is really central for me. Given that we never come up with perfect terms, if you get to take part in that imperfection and have worked through options, then whatever we come out of it with usually feels okay. Whereas, if someone else imposes something that's not quite right, that can feel very challenging.

CBH: I feel that trust can be built through the process of conversations within groups. For example in conversations about mental health, some people find diagnoses quite helpful, and some people don't, and find it quite restrictive. Within those conversations what's been most useful has been to recognise that everyone has different needs at different times, and that we're just really respecting people's own journey with that. Therefore, having those conversations is about building understanding, kindness and compassion - conversations that are centred in wanting to be supportive and work together well, acknowledging and respecting one another's differences.

CM: I would second that. It's really easy to get hooked on this idea that we need to get it right. I think people just prefer the opportunity to have a chat rather than to have no sense of shaping, and projects will be all the better for it - even if it's not clear, and it’s a little bit complicated, and maybe the conversations are a little bit heavy. I think it brings a depth to a project. It makes you consider things that you think “never would have crossed my mind,” especially when you've got differing lived experiences or experiences of marginalisation. It’s an opportunity to look through somebody else's lenses. And yeah, don’t die on the hill of needing to get it right, come to it with the right intention in creating a space to try and to fail safely.

DS: I feel like maybe if you've got it right, it's not that you've come up with the right term, it’s that it feels good. If everyone feels like the process was good, and are okay with what's come out of it, then you've got it right.

When I started doing lived experience work, it would have been hard for me to answer the question, “how do you want to be referred to?,” because I didn’t know what the options were. So, it can be quite nice to come into something with, “here's 10–20 ways in which other people describe their lived experience - do any of those help you think about something that is suitable for you?” I think we can help harvest learning from different projects and then share that back out to support others to find their own way.

CBH: Absolutely, and that feels like it's an important part of us continuing a conversation from the workshop, and recognising the blog as part of a continued conversation of shared learning - with the learning being an output that is hopefully of value to other people, whether they were part of the workshop or part of the wider programme, or they're just interested in the work generally.

DS: Yeah, I agree. I feel like our conversation here - reflecting and working towards something incomplete - is a view that we don't always get to see in others’ work. I don't think we now have all the answers, but we have moved forward. I’d like people to join us on that journey.

Thank you for taking the time to read this blog. As we have mentioned, we want this to be an ongoing conversation. If you would like to connect with Co-create about any of these themes, or would like to understand our work or this process more, please get in touch at info@wearecocreate.com.

About Mobilising Community Assets to Tackle Health Inequalities (MCA) 

Mobilising Community Assets to Tackle Health Inequalities (MCA) programme, MCA is a three-phase UK Research and Innovation (UKRI) funded Research Programme running from 2021 to 2027. It is coordinated by the Culture-Nature-Health Research Group at University College London, in partnership with the National Centre for Creative Health (NCCH) and funded by UK Research and Innovation (UKRI), led by Arts and Humanities Research Council (AHRC), with Biotechnology and Biological Sciences Research Council (BBSRC), Economic and Social Research Council (ESRC), Natural Environment Research Council (NERC) Medical Research Council (MRC). Mobilising Community Assets to Tackle Health Inequalities (MCA) has encourage the projects it has funded throughout the UK to share knowledge and approaches to integration of community assets into the integrated care structures that exist in the local communities.