"Not so ordinary," I am told; it is unusual for healthcare professionals to co-construct new practices by learning together with the people who use services. This paper describes action learning and research with NHS professionals and the parents of children with severe communication difficulties to develop a new practice framework for children with severe communication difficulties and a new model for service development which is inclusive and integrates evidence from multiple sources. A methodology is presented which draws together theory, empirical research and narrative to present my account of an inquiry that, in a way, spans the whole of my working life. The paper focuses on the three-year time frame of an NHS research fellowship, which was a period of collaboration and participation between myself, speech and language therapists and parents of children with communication difficulties in Liverpool. The purpose was to co-create a research design with parents and therapists who were shaping an emerging methodology whilst developing themselves in the process. This paper tells the story of the design and implementation of this methodology and the differences it has made to the participants and to children's services in Liverpool. (Contains 4 figures.)