My experiences as a lived experience leader

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

The term ‘lived experience’ seems to have been around for a while. But the term ‘Lived Experience Leadership’ seemed to be a term that I have only become aware of in the past year. I am not sure whether this is because I have become so used to being referred to as a ‘service user’ after spending 10 years doing service user involvement work, whether this is for my own and other mental health trusts, and for various mental health charities. To me, I often associated the word ‘leadership’ to those in management or in senior roles, and more so in corporate roles, as opposed to the charity or care sector.

But the word ‘leader’ in definition terms means someone who commands a group or organisation. And my concern was can those with lived experience truly lead a group or organisation, when we may have felt things were done to us by a system, regardless of any lived experience? So I felt we lost power or control, or that we were done to by a system where many of those at the top of the organisations may not understand lived experience, if they have not been through it themselves. And saying we are ‘Lived Experienced Leaders’ would mean there would have to be a recognition or admission that those with lived experience are able to lead themselves, lead others with lived experience, or even lead a system where they want to create change amongst those who work in such systems who do not have lived experience. Such a term could also mean a power shift or threat against the status quo of who may currently lead in such services at the moment. And have we created the term ‘Lived Experience Leadership’ to empower ourselves with lived experience, as we are tired of the tokenistic service user involvement journey after so many years? And my concern that if we are lived experience leaders leading others with lived experience, then do we create hierarchy amongst ourselves, where some are worthy of a leader status more than others, such as based on a preferred race, socioeconomic background, education, work experience, better communication skills etc? Like with ‘Peer Support’ transcending from grassroot communities where people share and support each other as equals, moving into professional organisations can create hierarchy, such as if we are not the selected ‘Lived Experience Leaders,’ then is our lived experience of lesser value?

I know for years I felt invisible with my lived experience of mental health, working for specific mental health trusts, or even taking part in some university research or charity focus groups. In my mental health trust specifically, I felt I could not talk with confidence or eloquence, or challenge or question a point against those in senior positions to me, as they were definitely more qualified in terms of work experiences or qualifications compared to myself. They also earned more money than me and were in a full-time position. Whereas I may earn little or no salary with lived experience work being unpaid or fairly low paid (although I am noticing the pay of those with lived experience being banded in higher salaries now in recent years, which is a positive recognition of the value of lived experience in organisations), and work only a few hours here and there. So who was I to know so much with just living with a health condition everyday? It felt like I came from a personal expression with lived experience, which felt invalidated and less superior compared to a professional standpoint. As I developed more skills and knowledge by understanding more about what my colleagues did in their role and what knowledge was involved, I found I was overpromised support or other opportunities. Even when I had not requested these in the first instance. As I chased these, I was fobbed off with excuses such as the person was on holiday and they would call me back, or several times emails were never answered as I chased many times with work colleagues.

Favouritism for choosing specially selected service users to lead service user projects, or those who could attend senior staff meetings, seemed to be based on who was good at paying lip service, and who could maintain the status quo and unconscious belief that service users are limited in their knowledge, and will never know as much as the professionals. So we could never healthily challenge their knowledge, or collaborate with them on an equal level to improve the system and services that were actually designed for us.

For me now, I realise that ‘Lived Experience Leadership’ is something I developed within myself, by recognising the skills and capabilities I have within myself to lead and support others using both mine and their lived experience to positively challenge the system. But also collaborate and understand why it works the way it does, seeing both sides of the situation, i.e the lived experience and the professional perspective. It is a continuous evolutionary process.
I also realised to lead I need to have empathy, and communicate well to get my message across, and to get others on board, whether it is those with lived experience or professionals to make effective change. It is self awareness and awareness of my surroundings, and also self respect I have had to learn to have for myself after many years of feeling inferior and worthless with my lived experience, to make me realise that I can give others with lived experience a voice to support them to express their needs effectively to make change in the system too. It is not about me holding the power or authority as a ‘Lived Experience Leader.’ But being an enabler and facilitator of support for those with lived experience and myself, to make a change to improve the services that we use the most, and that matter to us. I do not have to hide or stop being myself to be a ‘Lived Experience Leader.’

I have found networks of great people and professionals, both with and without lived experience, who encouraged me to lead using my lived experience, as they recognised the importance of lived experience to create progression and improvements to services. There are good supporters encouraging you to become a lived experience leader in many places, such as mental health trusts, local and national charities and in lived experience grassroots organisations. In the same way there can also be people who may hinder you from becoming a good lived experience leader, in the very same organisations too. It depends very much of the culture and ethos of an organisation and the people within it, I find. This meant individuals feeling safe in their jobs, and placing trust in me, and well as sharing some of their skills and expertise with me, so I could learn from them too. I found people gave me a chance, showed me respect, allowed me to be my true authentic self. Such good experiences include the NHS England Peer Leadership Development Programme, which is found under the teaching platform Futurelearn.com, under the search term ‘Personalised Care Peer Leadership.’ This course made me feel respected as a Peer Leader as it was to a high standard where I was given so much knowledge to make me feel as though I am just as capable as any other professional to lead other peers with lived experience, or to collaborate or lead groups to create change within local or national health systems. It made me feel very brave, as though I did not have to fear the hierarchy or status of a professional. As we are all equal people fundamentally, regardless of background, with the same common aims of wanting to make better services for those with lived experiences.

Having experience as a Trustee/Director of mental health charities both locally and nationally has also taught me that we should not be hindered by what we feel other people may think of us. That if we want to lead and create change, then we can do so, if we remain focused, determined, but open minded, so we learn and grow within ourselves, as well as with the support of others, building strong relationships along the way.


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”.