‘Lived Experience Leadership’

1st December, 15.30-16.30 (registration has now closed)

Watch the recording:

Click here to read the transcript.

“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 about ‘Lived Experience Leadership’? The term ‘Leadership’ is contentious. It can validate, invalidate, excite, irritate and bore people. The phrase ‘Lived Experience Leadership’ can broadly be used to encompass initiatives and situations where people with lived experience are involved in organising and/or influencing… whether that is as part of a named (and paid, or voluntary) role or not, whether it is seen or unseen, whether it involves a few people or thousands, whether it’s involvement, co-production, research, peer support, community development, media, training, organising, writing, activism, policy…”

Read the new report on Lived Experience Leadership by Rai Waddingham here.

Chair: Rai Waddingham
Panellists: Bethan Edwards, Jess Pons, Shuranjeet Singh and Tamar Jeynes


Bethan Edwards (she/her)

Bethan Edwards is a service user researcher, activist, and campaigner. She has long term experience of living with a mental health condition and is passionate about survivor/service user collective activism. Amongst many things, Bethan co-founded MadCovid, is a member of the StopSIM coalition, and was a Recovery in the Bin admin from 2018 – 2020, where she led a campaign resulting in the halting and amending of the #CALMEDTrial. She also wrote and co-delivered #Neorecovery: A survivor led conceptualisation and critique at the 25th International MHNR Conference, 2019. She has worked on numerous studies as a service user researcher.

Bethan openly leads a double life as a ‘professional’, having qualified as an occupational therapist in 2011. She currently works as an NHS research occupational therapist and is undertaking her PhD at Cardiff University.

Jessica Pons (she/her/they)

Jessica brings to the work her lived experience of distress within secondary care, and as a support to family members in the ‘revolving door’ of inpatient psychiatry. Jess recently left her post managing the Hearing Voices Project at Mind in Camden, with specific focus on bringing ethical approaches into forensic systems. She is now doing peer development work for Manchester Mind.

Jess is also a qualified integrative psychotherapist practicing within a critical mental health/sociopolitical framework and facilitates supervision and reflective spaces on a freelance basis. She is a trustee for the International Society for Psychological and Social Approaches to Psychosis UK (ISPS UK) and producing their film on institutional racism, ‘Dismantling the Master’s House’. Jess has been working in the third sector since 2013 and brings reflections on how this work can support wellbeing, yet also has potential to be exploitative. She has personal and political interest in institutional racism within services and the charity sector.

Twitter: @Jessica_Pons_

Shuranjeet (he/him)

Shuranjeet is the founder and director of Taraki, a movement working with Punjabi communities to reshape approaches to mental health which is informed by his lived experiences of mental health challenges.

Twitter: @Shuranjeet

Tamar Jeynes (she/her)

Tamar is a Lived Experience Professional who is working towards equality & parity of pay for openly ‘Mad’ people working in mental health. Full bio coming soon.


  • This session will have British Sign Language interpretation and closed captions. There will not be any presentations/slides used.
  • There are 100 spaces for this Zoom meeting, so please do cancel (using the link on the email sent to you after signing up) if you can no longer make the session. If the session is full, please email info@nsun.org.uk to be added to a waiting list (with the name of the session in the subject).
  • This event will also be livestreamed at the following link with no registration required. Click here to watch the livestream.