Lived Experience Leadership – Mapping the Lived Experience Landscape in Mental Health (2021)

Screenshot of the first page of the report, titled "Lived Experience Leadership", with a photo of the roots of a large old tree. It has the NSUN and Mind logos along the bottom and says "written by Rai Waddingham, Behind the Label Training & Consultancy"

Commissioned by Mind and NSUN, this report collates the contributions provided by people with Lived Experience through 106 survey submissions, 32 interviews and 7 focus groups with 31 people. It was inspired by a desire to understand the complexities of the ‘Lived Experience Leadership’ field and determine any supportive role Mind, NSUN and other mental health organisations might play. Contributions were gathered from August 2020 until January 2021.

This report is explicitly plural. Its intention is to honour and reflect the diversity in experiences and positions expressed by contributors rather than provide a neat narrative. As such, it includes many quotes – some of which may contradict one another, or offer another angle.

Headshot of Rai, who has glasses and red hair

Rai Waddingham

Author

About the report

This report is the result of our Mapping Lived Experience Leadership project.

Terminology

The report uses the terms “Lived Experience”, “Lived Experience Leadership” and “LE-led” as broad umbrellas. They are imperfect and not intended to override the words we find for our own experiences and activities.

  • Lived Experience (LE): Direct, first-hand substantive experience of mental distress, illness, diagnosis and/or mental health services. This can be associated with Lived Experience of poverty, trauma and other forms of prejudice and discrimination (e.g. racism and ableism).
  • Lived Experience Leadership (LEL): A broad term used to describe what happens when people use their Lived Experience to change, shape or create something to benefit others in the broad field of mental health.
  • LE-led: A term used to describe initiatives, projects, organisations that are run and controlled by people with Lived Experience (e.g. at least 75% of the trustees have LE)

Key findings

Lived Experience Leadership (LEL) is a contentious term that can evoke strong feelings. It can be validating and encourage a sense of hope. It can also divide, belittle and feel out of step with the more collective values inherent in the survivor movement.

Whatever term we use, it is clear that people with LE are leading on a range of projects, initiatives and organisations. LEL can be found in activism, social media, involvement, research, freelance work, grants panels, creative arts, policy/think tanks, community organisations, statutory organisations and across allied sectors.

Some of the challenges inherent in LEL include:

  • Unrealistic or impossible expectations
  • The fight for credibility
  • Serving someone else’s agenda
  • Not being valued
  • Working in dangerous territories
  • The heavy personal toll
  • Attacks from others

Things that have helped so far include:

  • Connections
  • Access to genuine and meaningful opportunities
  • Ownership
  • Finding a space to be me in all this
  • Finding space to question things
  • Creating cultures that care (and caring for ourselves)

What more is needed?

  • Nurturing lived experience – any supportive endeavour should be underpinned by principles of being LE-led, learning from the past, acknowledging inequalities and harm, and being visibly, genuinely diverse. Rather than creating a single offer of support, contributors highlighted the need for a range of options that people can choose from at different times, such as LE-specific leadership training and networking, investments in LEL, and having a specific and independent body or union.
  • Creating supportive contexts for LEL – as so many challenges were linked to systemic problems, there is an urgent need to focus on contexts and organisations people with LE are trying to work in. This includes leading by example (in the case of mental health charities, ensuring LE is embedded at all levels), highlighting the value of LEL, supporting organisations to embed LEL, making a substantive commitment and investing resources, and having brave intra-organisational conversations.