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

This work sets out the complexities of the concept of ‘Lived Experience Leadership’. It sets out where people with lived experience of mental ill-health, distress and trauma are leading in policy, research, activism, involvement, and much more, and identifies the challenges around this work (which may be paid or unpaid, formal or informal). It also considers what can be done to support and nurture ‘Lived Experience Leadership’ across a range of contexts.

Click here to download the plaintext (Word doc) version of the report

Click here to download the plaintext (Word doc) version of the executive summary

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.

Panel discussion

At the NSUN AGM 2021 we held a panel discussion on the topic with Rai Waddingham, Bethan Edwards, Jess Pons, Shuranjeet Singh and Tamar Whyte – you can watch it below.