Mapping ‘Lived Experience Leadership’

Darllenwch y dudalen hon yn

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.

Over the next month I will be listening to as many people as possible (through an online survey, interviews and focus groups) 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.

Take Part:

There are four different ways of sharing your views and experiences.

  • Online survey
  • Collaborative whiteboard
  • Interview
  • Focus Group

Online Survey:

If you would like to share your thoughts and experiences on ‘lived experience leadership’, please complete this survey:

All surveys are anonymous. If you email me in a pdf survey or a recording, your email will be deleted as soon as I have saved the information. Recordings will be transcribed and then the audio copy will be deleted.

If you’d prefer to record answers to the survey, please do. Send the audio recordings to [email protected].

If you would like to download an easy-read version of the survey, click here for a pdf version. The Word version is available here. Just fill it in, save a copy and then email it back to [email protected]

If you would like to download a pdf version of the survey (compatible with screen readers), click here. The Word version is here. Again, please fill it in, save a copy and then email it to [email protected]

If you would like the assistance of a translator, or know someone who would benefit from this, please tell us.


We have set up an interactive whiteboard, with 5 questions. You are welcome to write, draw or add images to them.

Join the collaborative whiteboard (others can see, and add to, what you have contributed):

Share your thoughts in your own personal whiteboard (you won’t be able to see anyone else’s contributions, and they won’t be able to see yours):

Interviews and Focus Groups

If you would like to take part in an interview (phone or online) or join an online focus group, please fill in this form:

All focus group and interview participants will receive £50 (in money or vouchers) in thanks for their time. Interviews and focus groups should take up to 1 hour of time, each.

If you have any questions or concerns about any of this, you can email me at [email protected], or speak with Akiko [email protected].

Interviews and focus groups will also be available in Welsh.


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