“What do you do?”

Our second blog in a short series exploring what “lived experience leadership” means to us.

‘What do you do?’

I am shy and awkward at the best of times and can only really manage small talk with strangers when I am 3 gins down, but this question, ‘what do you do?’ it’s one I routinely dodge.

And not perhaps for the reasons you might think. In my teens and 20s I felt a lot of shame about my experiences of mental illness and would avoid situations where it might be asked about. But now that I am more in the mad and proud camp, I am happy for people to know of my struggles and want people to understand how they created the shape of me. Well-meaning folks say ‘you are not your mental illness,’ well actually there is not a lot of me that I can separate out from my experiences.

But yeah, talking about my work role is something that still feels pretty uncomfortable.

Service user involvement, expert by experience, coproduction, patient leader, or lived experience leadership- not terms that the general public tend to recognise. (Some days I pretend to be something else.)

But perhaps more importantly, and trying not to being dramatic, doing this work is a painful and lonely job and one where now I feel quite trapped. And I say that acknowledging straight up now the decent salary I get paid and the privileged position I am in to be able to work each day.

I sort of fell into user involvement, there was certainly no plan of how this would go. Spending long periods of time on various psych wards I was outraged at how awful mental health care was, how I saw others treated, the horrors of the labels I had been given and what it had done to me as a person. I had no language to talk about it at that point, didn’t know anything about the history of mad activism and had no idea there were so many people out there who felt similar. 

But even back then I think I recognised that as someone white, with a good education and middle class background I had some power in there and passed as one of them. I thought maybe I could do some good and naively believed I could help change things. That has remained my motivation I guess.

Since those early focus groups, research studies and recruitment panels where I first tentatively tested my voice, I have had ten years of learning. I have met incredible mad people who have become good friends, I have done lots of interesting courses and my CV is unrecognisable. I’ve looked up to and learned from some incredible role models. I’ve managed to get a paid role within the NHS and have progressed up the pay scale. And I’ve seen the move from talking about involvement and engagement to co-production and now lived experience leadership.

I now work in a service where I am explicitly paid to use my lived experience to try and bring about change in culture and practise. On paper I am part of the leadership team. This could be such a happy success story, couldn’t it. I am very much one of the lucky ones. And yet…

As the language has shifted along a bit, and a few of us given a salary, has anything really changed?
Has there been space created in there for us to lead? Is our hard earned knowledge respected and trusted? As patient leaders do we have power to create change? Are patients valued in the way clinicians are? Or are we discriminated against by a system that has already deeply hurt us? Are we silenced and gas lit in those familiar ways? Is our wisdom assimilated and co-opted to promote the status quo? Are we anything more that window dressing? 

An 800 word blog isn’t the space for the stories I have to tell about what has happened in the roles I have had, about the friends lost doing this work, about the way services have hurt me as a mad employee in the same ways they did when I was a patient. But I am hoping this might start a conversation with people out there trying to do similar. How can we stay sane in this whilst we continue to fight for change? How can we build a network where our stories might be heard?

I am still here doing this for now. And I still hold on to the potential that we have collectively. That people who have experienced the MH and social care system have the answers as to what needs to be different. That our survivor knowledge is precious and needs nurturing and supporting to lead much needed system change.

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 amy.wells@nsun.org.uk

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”.