Popham Kidney Support knows first-hand what it means to turn lived experience into action. Founded in memory of Paul Popham, who lived with kidney disease for over 30 years, the charity was born from a family’s fight to access treatment on the NHS. This fight changed policy in Wales for every kidney cancer patient. Lived experience has become a popular mode for service delivery, but is it genuinely shaping decisions, services, and strategy?

This session explores the gap between intent and impact, examining how organisational culture, power, and decision-making can either enable or limit meaningful involvement, and what it really takes to move beyond tokenism.