Is 'Lived' Experience enough?

In this blog, our new Head of Programme Dawn Brown reflects on different aspects of lived experience and the importance of ensuring it is relevant and meaningful and that the people involved are properly supported.

As practitioners* working with people, we are all aware of the move to “co-” everything, with projects and services increasingly using co-production, co-design and co-creation with people with lived experience. It’s a positive move to involve those with expertise by experience in shaping what actually works, and including the people accessing services in planning and delivery, but is ‘lived experience’ always meaningful and useful enough?

Lived is in the past tense – it’s something we have already done. Is this the best we can aspire to when working with people to design responsive, proactive services, or should we consider a shift from lived to living experience to ensure those involved in co-production have current experience?

We all have different experiences throughout our lives, and they are not always static. Personally, I could claim to have lived experience as a single parent, however my circumstances have changed and I’m not anymore, and haven’t been for a number of years. But by the definition of “lived” experience I could have my personal experiences drawn upon in a co-productive .

My experience is historic, possibly out of date and I didn’t navigate through experiences like COVID, so my relevance to the area of lived experience is within that context. What I do not have is living experience - my own experiences lack current relevance; the up-to-date and current knowledge held by people who are experiencing that right now.

As a consequence, we need to be clearer about what we are looking for when we recruit people with lived experience for co-productive and engagement processes, though we acknowledge this can add to an already challenging undertaking.

“Over asked and under heard”

It can be difficult to involve those with lived and living experience. People often feel “over asked and under heard” and don’t want to give their time to something that possibly won’t make a difference. Add in the immediacy of living experience while navigating the challenges of managing those issues, and it becomes even harder, but that doesn’t mean we should shy away from asking the difficult questions about relevance, current experience and knowledge. It is crucial that we ensure support is in place to allow appropriate and flexible levels of involvement in meaningful and impactful ways.

As practitioners and policy makers, we may find comfort in developing Lived Experience Panels (under a number of different names/guises)  where we can invest in learning, training and upskilling, developing good relationships and supportive working environments, but do we sometimes become complacent that these are enough?

Yes, resourcing is always hard, and we can’t always have fluid membership of groups as some panels deal with really complex issues and challenges that will require considerable learning to fully get to grips with the topic.

So we need to ask ourselves, are we sometimes too comfortable working with a group of people over time and overlook the task of ensuring the relevance of their expertise to the issue? In addition to this, it’s worth considering how often participants feel somehow “duty bound” to stay involved because they feel they’d be letting folk down if they weren’t.

Supporting lived and living experience

From my experience, and talking to people who have been involved in panels – some for many years, that it is a multi-faceted feeling of responsibility – to the issue/area of interest, to the other group members and to the organiser of the group, and that is a lot of weight to carry.

We can ensure we build in regular reviews and check-ins with people on the panels to ensure they are still feeling it is relevant to them, that they wish to stay engaged and involved, and more importantly to give them the support to move on if that’s right for them – without worrying about the gap they will be leaving behind. We owe that to people who have given us so much time and energy to manage their moving on and project endings well.

The challenges of creating a successful, supportive and workable lived and living experience group is one that often comes up at the SCN Ideas Clinics, so there is not an easy answer for this – it is an issue we will continue to grapple with. Answers on a postcard always welcome!

*In this blog, I have used the term “practitioners” , though it is not a satisfactory description for me personally, and shows the tensions of language around coproduction. Ideally we should all be partners in the discussion; equality within that space is challenging when the power to make change can belong to the organisation and coproduction is at their pace and permission.