‘Nothing about us, without us’: involving people with lived experience of multiple disadvantage – learning from the Fulfilling Lives programme

Abstract

This paper presents learning and insights drawn from the Fulfilling Lives (FL) programme – an eight-year programme funded through the National Lottery Community Fund (NLCF) and delivered across 12 sites in England. The programme aimed to improve services for people facing multiple disadvantage (MD) and was delivered by 12 partnerships, each led by voluntary sector organisations (VSOs). The findings were supplemented by interviews carried out with delivery partners, stakeholders and people with lived experience (LE) from one of the 12 projects, Birmingham Changing Futures Together (BCFT). The review and supplementary interviews were conducted as part of a ‘scoping exercise’ designed to help the author shape and refine research questions at the outset of her doctoral study. The focus of this paper is the involvement of people with LE in the delivery of the NLCF FL programme. The research questions explored the mechanisms used to involve people with LE of MD, the impact that their involvement was found to have on effecting ‘systems change’ and some of the limiting factors to this involvement. The paper sets out the conditions needed to facilitate better involvement and considers what these insights offer for the future design and delivery of services for VSOs seeking to develop their approach to involving people with LE.