By Nikki Adebiyi, April 2021

You can find the rest of our blogs and vlogs on lived experience leadership here.

Have something to say about this thing called 'lived experience leadership'? Get in touch with us about writing a blog or filming a vlog by emailing [email protected]

See below for an explanation of the terms lived experience and lived experience leadership from NSUN Associate Rai Waddingham's recent mapping project:

"What do I mean by ‘Lived Experience’?

Everyone has experience of living. But when I say ‘lived experience’ I’m referring to a particular kind of experience - experience of mental health issues, being a client/patient of mental health services, being diagnosed with a mental health problem and/or hospitalisation.

It’s a clumsy term, but it’s the best one I have at the moment. I’m using it because I believe there is a big difference between going through experiences like these and supporting someone else through them.

What do I mean by ‘Lived Experience Leadership’?

The term ‘Leadership’ is contentious. It can validate, invalidate, excite, irritate and bore people. It may be that the term ‘leadership’ offends or annoys you. If that’s the case, I hope you still contribute to this project as you have something important to offer that needs to be heard.

A large part of this project is about engaging with the questions, complexities and debates around lived experience leadership. We want to understand and give space to different viewpoints, rather than gloss over them and produce a single narrative and pretend it is the truth.

Whatever words we use to describe them, I hope to learn about initiatives and situations where people with lived experience are involved in organising and/or influencing.

This could be:

  • At home, in our local area, in cyberspace, regionally, nationally or internationally
  • With words, actions or in more creative ways
  • As part of a named role, or not
  • In a paid, unpaid or partly paid
  • Acknowledged by others, or unseen
  • Involving a few people, or thousands
  • Involvement, co-production, research, peer support, community development, media, training, organising, writing, activism, policy or something I haven’t yet found words for."

This work is part of a partnership with Mind on "Lived Experience Leadership".