View article

‘Nothing about us without us’ is a phrase reflecting the idea that services and policies should involve the engagement and participation of members of groups and communities affected by that policy. While the concept is said to have originated in early European politics, its use in health care really came to the fore in the 1990’s as a result of disability activism, as a response to the ‘many types of (disability) oppression and its simultaneous opposition to such oppression in the context of control and voice’(Charlton, 1998: 3).

Since that time, the concept of active participation of services users and consumers has been increasingly recognized as important in health care. This idea of nothing about us without us has been taken up in relation to many consumer groups and targeted services (see for example: Frawley & O’Shea, 2020; Mathews, 2021; Nwaba et al., 2021; Oldfield, 2021; Orser et al., 2021; Funnell et al., 2020 …