Lived Experience

Lived experience now appears everywhere in public service language, but a phrase used everywhere can lose its meaning. This module sets out what lived experience, lived expertise and experts by experience mean, using Baljeet Sandhu's three forms of expertise and Miranda Fricker's ideas of testimonial and hermeneutical injustice. It traces the history behind nothing about us without us and offers a spectrum for judging how your organisation treats lived experience.

Lived experience leadership moves people from being consulted to leading change. Drawing on Baljeet Sandhu's three forms of expertise, this module explores a spectrum of roles from feedback to leadership, the shift from being asked to doing the asking, and peer roles in services. It sets out the pay, support, supervision and power that make leadership sustainable, contrasts tokenism with genuine leadership, and uses Recovery Colleges as a case study.

If lived experience never reaches the rooms where budgets are set and leaders appointed, it stays one step removed from real decisions. This module maps governance roles on a spectrum of power, compares board seats with advisory groups, and sets out five steps to equal status. It covers conflicts and confidentiality, why one token trustee is a risk, and two cases: CQC Experts by Experience and Poplar HARCA, read through Arnstein's ladder.

Peer support is help from people who have been through something themselves, and it now sits inside many public services. This module sets out its core qualities of shared experience, mutuality, hope and choice, drawing on Shery Mead's work, and reads the White and colleagues meta-analysis honestly. It explains how peer roles drift, how to protect what you hired, the Hearing Voices Network case, and six steps to a lasting peer workforce.

Personal accounts can change minds in a way data rarely does, but they can cost the teller a great deal. This module distinguishes story as expertise from story as spectacle, applies Arlie Hochschild's concept of emotional labour, and examines re-traumatisation and where harm tends to come from. It sets out consent as an ongoing process, an insight and detail matrix, a six-stage protocol for sharing, and the organisation's duty of care.

What happened to people shapes how they meet services, and engagement can echo the power and control that trauma often involves. This module applies the six SAMHSA principles and the Trauma-Informed Wales framework, with its five principles and four practice levels. It shows why trauma-informed practice is a way of working, why predictability is a kindness, what changes in venues, choice, power and language, and how to hold hard conversations safely.

If lived experience is expertise, the way it is recognised has to reflect that. This module sets out four reasons payment matters, including how unpaid involvement chooses who takes part, and places payment among other forms of recognition. It uses the NIHR payment rates as a benchmark, covers benefits and tax with care, and shows how to build a recognition policy and cost involvement in from the start.

A seat is not a say. Drawing on the critique that service users, survivors and disabled people have made of involvement, this module names everyday forms of tokenism and challenges the usual suspects complaint. It locates tokenism on Arnstein's ladder, applies Peter Beresford's consumerist and democratic models, and examines how independent voices become absorbed. It introduces the 4Pi National Involvement Standards and ends with questions a board should ask itself.

Lived experience is judged by what changes, not by how many people were heard. This capstone applies five questions on context, power, conditions, change and transfer to three cases: the Poverty Truth Commission, Social Security Scotland's Experience Panels and Recovery Colleges. Each is read through lenses from the programme, including Fricker's epistemic injustice, Beresford's models and the 4Pi standards, before a closing synthesis in the lived experience pyramid.