Mental Health Carer Advocacy and Participation
As users of services, mental health consumers, their families and carers have a lot of valuable information to share on improvements that can be made to mental health services, including service planning, policy development, setting priorities, training and evaluation, and addressing quality issues in the delivery of mental health services. The process of sharing this information with health services is called participation.
Participation also refers to the process of engaging consumers, their families and carers in decision making about their own care, or that of the person they are caring for.
(Reference: NSW Government)
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Who are Carers?
A carer is any individual who provides care and support to a family member or friend who has a disability, mental illness, drug and/or alcohol dependency, chronic condition, terminal illness or who is frail.
(Reference: Carers NSW)
The Importance of the Carers Perspective
Consumer and carer participation in all levels of decision-making is fundamental for the improvement of mental health services and crucial to improving the lives of people with a mental illness.
The continued participation and engagement of consumers and carers in the development, implementation, delivery and evaluation of services is essential for mental health reform.
(Reference: Mental Health Australia)
What is a Carer Representative?
Carer Representatives play an important role by representing carers and Carers NSW in a variety of settings and sharing their caring experiences with service providers, government, the media and broader community.
(Reference: Carers NSW)
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Carers NSW is the peak non-government organisation for carers in NSW and a member of the National Network of Carers Associations. Their focus is on improving the lives of carers.
Mental Health Carers NSW
Mental Health Carers NSW is a non-government organisation that provides systemic advocacy and support for families, relatives and friends of people who experience mental illness, living in NSW.
National Mental Health Consumer & Carer Forum
NMHCCF members represent mental health consumers and carers on a large number of national bodies, including government committees and advisory groups, professional bodies and other consultative forums and events.
Members use their lived experience, understanding of the mental health system and communication skills to advocate and promote the issues and concerns of consumers and carers.
Children of Parents with a Mental Illness (COPMI)
The COPMI (Children of Parents with a Mental Illness) national initiative develops information for parents, their family and friends in support of these kids and young people. This information complements online training courses developed by COPMI for professionals to support families either individually or through community services and programs.
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A Carers Story
I became involved with the mental health system in 2000 when my son was admitted as an involuntary patient to the adult acute mental health unit at a local hospital. He was eventually diagnosed with Schizophrenia.
I can clearly remember my feelings of overwhelming sadness, despair and guilt. I felt my son’s diagnosis was a life sentence and there was no hope! When he was finally released into our care that’s when we realised how little we knew about mental health services. We soon became aware there were very few services and the system was complicated, confusing and difficult to access.
Then I came across a Carers NSW brochure which advertised free ‘Mental Health Education for Carers of People with a Mental Illness’. I rang to register and I am so glad I did. I always credit the mental health education I received as playing a big part in saving my marriage, my sanity, my family and best of all my son. Education put tools in my Carers toolbox, strategies I could use to de-escalate a crisis and understandings about how best to support my son into recovery. It also prepared me for being able to advocate for my son, myself and my family.
I have learned much about the mental health system and it is still difficult to navigate but now we, as Carers, have more support because of carer advocates. There are more organisations now, like Partners in Recovery (PIR), who acknowledge and support the carer’s role and help carers learn to advocate.
“Wherever you go, go with all your heart”