This story is part of a series written by mental health carers in which they share how they became participants, influencers and leaders in the NSW mental health sector, in hopes of encouraging other carers to do the same. See the full series, and learn more about the project.
I have been a carer for nearly three decades, although I did not identify as a carer for most of that time. I became active in carer advocacy through a friend of mine who was a carer representative at the local hospital community consultative committee. Out of curiosity, I joined too and found it empowering to have professionals and non-government organisations (NGOs) listen to me as a carer, and to consider my viewpoint on items under discussion.
Being face to face with services providers in both the health and NGO sectors also gave me a unique insight into their world. I began to feel less like a victim of my circumstances and, to a certain extent, more like of a co-designer of services.
I joined other mental health services and the more I learned, the more I wanted to learn. As I made connections within the mental health sector, I was approached by organisations to work for them and to take part in projects like organising forums, supporting research into mental health areas, and speaking about my experience as a carer.
I became a carer representative on interesting committees and projects.
I worked as a support worker for an NGO, then as a carer consultant for Partners in Recovery as well as several years working with the peak mental health carers group, Arafmi, now called Mental Health Carers NSW. With each experience, I continued to learn and network.
Even after 20 years as a carer, I still regarded services as being the ‘experts’ on mental health. This view was changed by the Mental Health Commission of New South Wales, which introduced me to the concept of “consumer and carer lived experience”. The Commission places a high value on this lived experience. This was a big turning point for me. After caring for someone for so long through a nightmare of situations, it made good sense to me that I should be considered to have expertise by experience, a view that many in mental health services cannot fully appreciate. For the first time, I became proud to be a carer.
By being involved and networking in mental health, I have met some inspiring and dedicated people. I learn as much from the people I come into contact with as from the formal training in mental health that I have done. I completed the Certificate IV in Mental Health Peer Work and I am a big advocate of the effectiveness of peer workers, both carers and consumers.
My advice to other carers is to get involved in mental health services in your local area. The rewards are great. It will help you take back control over your life that I know so often feels out of control, and help you not to feel a victim of your circumstances.
Carers have a lot to give and a lot to learn. Carers have a valuable voice, so let it be heard in any way you feel comfortable with, either in a small way or by being directly involved with and working in mental health services.
Your voice is important and you can influence services and government on how the mental health budget is being spent. You can influence and inform decisions in areas you would like to see change either locally or nationally by becoming the agent and advocate for that change.
There are many good people working hard for change in mental health, and you can be one of them. The benefit to you is that you will be empowered and more feel more optimistic about your caring role. Just do it! What have you got to lose?