Pristiños

in the National Framework and resources review, as well as to develop a strategy for ongoing

consumer, family and carer participation within the National Eating Disorders Collaboration.

Individuals with a lived experience, and their carers, are in the unique position of having a

birds’ eye view of promotion, prevention, early identification and the treatment of Eating

Disorders, and have a vested interest in seeing positive outcomes in all areas.

CHAPTEr 8 ⁄ CONSUMERS AND CARERS

Consumer and

Carer Participation

The consultation process revealed that for many people across Australia the experience of an Eating Disorder was associated with feelings of alienation from a system that left them depleted emotionally, spiritually, physically, socially and financially.

Consumer and carer perspective and participation will benefit future Australians who experience Eating Disorders as well as the general community, service providers and government. By utilising the lived experience, the quality of prevention, treatment, training and research programs will be fundamentally enhanced and this will have significant impact on incidence, prognosis and outcomes. Consumers and carers are also in the unique position of being able to use their ‘insider ‘ knowledge to identify risks associated with current prevention, promotion and treatment strategies and illuminate the road less travelled. So far in the field of Eating Disorders, the information, feedback, ideas and strategies from those with lived experience remains a largely untapped precious resource.

Many people who have lived with an Eating Disorder have felt silenced by stigma, isolation and powerlessness. The opportunity to “have a voice” and be influential in a positive way, such as by improving knowledge and services for Eating Disorders, can be both empowering and healing to peoples’ suffering. Increasing participation will move consumers and carers from a passive role in their journey to a positive one that allows them to be active and confident participants in the wider community.

In Australia there has been a very real shift from viewing individuals as passive users of health services to active collaborators in their treatment, and also in the design and review of services, research and policy. The National Mental Health Plan (2003 to 2008) stated that “The rights of consumers, and their families

mental health care should be responsive to the continuing and differing needs of consumers, families and carers, and communities. Outcome 25 of this plan required “Increased levels of full and meaningful consumer, family and carer participation in policy and in service planning, delivery and evaluation at all levels with evidence of improvement in quality”.

The Fourth National Mental Health Plan (2009- 2014) launched during the NEDC review process includes as the first of its overarching principles “Respect for the rights and needs of consumers, carers and families” stating that “consumers, their carers and families should be actively engaged at all levels of policy and service development”. Consumer and carer participation strategies have also entered the research agenda in Australia. The National Health and Medical Research Council has developed a statement and set of strategies to increase consumer participation in health research which includes increasing the information provided to consumers about research, ensuring consumer representation on the research committees and involving consumers and the community in the design and evaluation of research.

Active participation of Australian consumers and carers in the field of Eating Disorders is not new; they have spearheaded many not-for-profit community-based organisations across Australia despite the inherent resource and personnel challenges. These organisations have strong underpinnings in activism and play significant roles in advocacy, information and support and are a key point at which appropriate referral and direction can be provided.

Consumer and carer participation extends across advocacy, service review and advisory boards, service development, and provision for both not-for-profit and publically funded services. There are some encouraging examples of active consumer and carer involvement in service development and provision in the field on Eating Disorders in Australia. These strategies are described in more detail in Chapter 3 of this

CHAPTEr 8 ⁄ CONSUMERS AND CARERS

The growing involvement of consumers and carers in government and non-government Eating Disorders programmes is just the start in challenging the traditional top down structures that have alienated them from service provision and development, research and training

programs and policy making. There are still many gaps in implementation of policy and practices across Australia.

At an international level Australia has been actively involved in the launch of the Worldwide Charter for Action on Eating Disorders (June 2006). The document was penned by the Academy of Eating Disorders (currently chaired by Professor Susan Paxton – Australia) and The Bronte Foundation (Australia). It outlined five key rights which cover the right to: communication/ partnership with health professionals;

comprehensive assessment and treatment planning; accessible high quality fully funded specialised care; respectful, fully informed age appropriate, safe levels of care; and accessible appropriate support education and resources for carers.

A common international response by people with lived experience has been to join together in national groups to capitalise on the capacity of the collective voice, with the establishment of NEDA in the USA and BEAT in the UK. In the Review Forum, consumers and carers expressed their desire to also have a collective Australian voice.

The field of Eating Disorders is relatively new and rapidly expanding, and Australia is at the forefront with the potential to lead the way in international strategic direction. Many people experiencing Eating Disorders are willing and ready to contribute to the knowledge base, research and intervention for Eating Disorders.

Identified Issues for Consumer