Lived experience engagement explained

This blog was written by Lisa Ward (VAMHN Lived Experience Coordinator) on the key concepts behind lived experience engagement. To find out more about Lisa you can visit here website here or follow her on Twitter @LisaPinkyWard.

What is lived experience engagement?
​Lived experience engagement (sometimes termed expert by experience engagement) is often used as another way to say ‘co-production’, however I’d also argue that sometimes the two are not the same.
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Co-production is a term used within the statutory and charitable sector to describe the process of ensuring that the voices of those who will use services, are embedded in the design and delivery of the service. Think Local, Act Personal have a great ladder of co-production which talks through the steps to reach full co-production. It’s worth bearing in mind that whilst good lived experience engagement should be synonymous with co-production, sometimes it can be used to refer to any step on the ladder higher than the informing step.

Lived experience is often used as a way to recognise that knowledge doesn’t just come from academic learning, or from work experience, but also from experiences you have in your life. This knowledge should be seen as equally valuable to the way in which we gain other knowledge, but often it isn’t. A great example of how this plays out is how formal qualifications asked for on a job profile, but rarely is lived knowledge even referenced knowledge.

Often however, people think they’re co-producing when they’re really not. For example if you’ve already set your strategy without involving the voices of those with lived experience, you’re not co-producing. If you’ve decided what service you want to offer (say a support group) and the only say those with lived experience get is on the topics or timing of the group, that’s not co-production. Co-production often means going back to the start, recognising there is a need (for example survivors of sexual violence need support) but then working with those who might need the support to work out what that support looks like (whether it’s a group, one-to-one support, or something else entirely). Equally it means reflecting the voices of those with lived experience at every level in both the big and small decisions.


And why does it matter?
When businesses launch they often undertake market engagement to see what will turn a profit. If they get it right the business succeeds, if they get it wrong it fails. Health and social care is similar, if you create something which meets the needs of those who will use it, it will thrive, if you get it wrong, it won’t be used.

However, lived experience engagement/co-production is also more than this, as it’s about ensuring those with lived experience also deliver services. It’s able seeing lived and learned knowledge as equal, and understanding that embracing those with lived experience can be empowering for people using services (as it enables a sense of hope for people using services) but it’s also empowering for those who are delivering services as lived experience experts (creating an ability for people to feel like they’ve turned a potentially negative situation into a positive one). It also means other staff can learn directly from those with lived experience, and creates a much better equality of power with less hierarchy between roles.

A word of caution
Lived experience engagement/co-production also requires thinking and planning. In my experience people can also be taken advantage of (for example lived experience roles being frequently paid much lower than other staff roles), or it can be done in ways which is tokenistic (for example people are involved but they are only reflective of a certain group or type of person). Good lived experience engagement/co-production takes time and planning to do well and should be an ongoing cycle of learning and adaptation to really be both effective, and fair to those who are involved.

Likewise there’s an assumption that all work should be co-produced, or that consultation doesn’t add value. I’d argue that good lived experience engagement takes account of different wants and needs. For some people, consultation might be what they want to do, and thus is perfectly appropriate. Similarly, co-producing for the sake of co-producing can also be tokenistic, especially if there’s no real benefit to those engaged in the process. This is why good lived experience engagement required proper planning and time.


Original blog posted here on 14th November 2022.