Lived Experience Leadership

We have now published ‘Lived Experience Leadership – Mapping the Lived Experience Landscape in Mental Health’ (2021), the report that came from this project.

screenshot of the first page of a report titled Lived Experience Leadership with a picture of the aboveground roots of an old, large tree.

Original information on our Mapping ‘Lived Experience Leadership’ project, 2020/21

Darllenwch y dudalen hon yn Cymraeg

Hi. My name is Rai. I’m a survivor (of psychosis, mental health services, diagnoses, trauma, coercion and a few other things). I’m working with NSUN and National Mind to help understand more about this thing that some people call ‘lived experience leadership’ in England & Wales.

I will be listening to as many people as possible to explore:

  • What does ‘lived experience leadership’ mean to different people?
  • In what ways is it a helpful or harmful concept?
  • Examples of projects, initiatives and situations where people with lived experience have been involved in organising and/or influencing.
  • What can help to nurture / strengthen this?
  • What can stop it, or make it difficult?
  • Ultimately, I’m looking at whether there is a role for NSUN and National Mind to support the thing that gets called ‘Lived Experience Leadership’. If there is a role, I am wondering what that role might be.

At the end of the project, I will be gathering the learning together to share with NSUN and National Mind who have commissioned this work. I will also write an open-access article or blog, sharing the key points with the wider community. This will be shared on NSUN’s website, but if you’d like to make sure you get a copy please email me.


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.

Why am I doing this?

Over the years, I have benefited from the time, wisdom and generosity of other survivors in many different ways. I’ve seen survivors connect, organise and generate bodies of wisdom that have helped shape the landscape I walk in. Without this, I would not be who I am. I’ve also seen people burn out, be silenced and become exhausted. I have been exhausted and jaded, at times, myself. I find the idea of leadership challenging in lots of ways, and in this project I am asking questions that I do not have fixed answers to. I am genuinely interested to hear what others think.

Separate to this piece of work, I am currently studying for a PhD in the field of survivor knowledge and organising in mental health. It is a topic that is close to my heart and I am spending a lot of my time being curious about it.

Can allies take part?

Whilst allies are welcome to complete the survey, and have valuable contributions to make, this process will privilege the voices of people with lived experience.

September 2020