— Foundational / Seminal Work
Innovative and influential work that has gone before.
Summary
In 2004, the National Consumer and Carer Forum (NCCF) developed this document as a guide for all organisations involved with mental health within the public, private and non-government sectors, to utilise in the development and/or implementation of consumer and carer participation policies. This Policy aims to cover all levels of participation, and includes consumer and carer input at individual, local, state, and national levels.
The document is intended as a best practice example of a consumer and carer participation policy and may be adopted by any organisation. However, it is recognised that this document may need to be adapted to local or organisational needs.
Abstract
Background: Consumer and carer participation in mental health service development and evaluation has widespread nominal support. However, genuine and consistent participation remains elusive due to systemic barriers.
Aims: This paper explores barriers to reform for mental health services from the perspectives of consumers and carers actively engaged in advocating for improvements in the mental health system.
Method: Qualitative research with two mental health systemic advocacy organisations analysed 17 strategic communication documents and nine interviews to examine barriers to reform and participation identified by consumer and carer advocates and staff.
Results: A number of individual-level barriers were described, however advocates gave more focus to systemic barriers, for which five themes emerged. These reflected lack of awareness, limited participation opportunities, slow progress for change, policy issues and mental health culture including stigma.
Conclusions: Findings highlight systemic barriers to participation for consumer and carer advocates as a whole and the influence of these barriers on the individual experiences of those engaged in advocacy and representation work. Participants also emphasised the need for leadership to overcome some of these obstacles and move towards genuine consumer and carer participation and reform.