The term “nothing about us without us” is being used to
advocate for people with lived mental health experiences to
be included in activities (such as policy and research) that
affect them. It refers to research being carried out ‘with’ or
‘by’ not ‘to’, ‘about’ or ‘for’ them (National Institute for
Health and Care Research [NIHR], 2021). These terms are
used beyond the disability sector by marginalised groups,
advocates and within healthcare, including mental healthcare
(Jackson & Moorley, 2022). In mental health nursing for
example, “experts by experience” refers to the involvement of
people with lived experience in academic mental health education.
Mental health education involving people with lived
experience as experts has been shown to enhance the development
of empathy and critical thinking skills in students
while supporting the rights of service users to be involved
in all aspects of mental health-related activity including education,
research, and policy reform (Happell et al., 2022).