“As a family we made the decision to disengage with the public mental health service… They would not discuss our daughter’s diagnosis with her, and it was frustrating to engage in the service that was not providing the right support.” – Carer –Lived Experience Australia’s Missing Middle Research
It’s one of the hardest things to go through as a parent.
Experiencing your child or adolescent going through mental distress or ill-health is torturous. The emotions run wild – worry, fear, exhaustion, anger. So many questions that are unanswered, and frustrations with what is happening to your children.
That is only the tip of the iceberg. We can feel like no one is listening to us, or our loved ones.
Sometimes we get so emotional about it that we feel that must DO something, to make a change. This situation and the system just aren’t good enough for our children, and something must be done.
Advocating for our loved ones
Speaking up for those we care about is one way to think about advocacy, it’s putting our voice forward to intercede for others.
Often, we are not only doing it for ourselves and our loved ones, but for others who we may not even know, and for future generations.
We simply don’t want others to go through what we and our loved ones have been through.
Advocacy is a great way to be a part of the change we want to see.
How to be an advocate
There are simple ways to advocate and be an ally for those we care for.
We can speak up when others use language that stigmatises mental health concerns.
We can support those we care for to find their voice.
We can listen to their experiences and use what we learn to help them get the support and/or services they need.
We can find ways to speak for them when they don’t feel able to do so.
We can write and/or speak to people who can influence the outcomes we are looking for – such as politicians or service providers.
Advocacy can be incredibly rewarding as we are able to see changes and be a part of working towards making things better for our loved ones.
It can also be draining if we feel we are not getting anywhere, so it’s important to look after ourselves while we are advocating for others.
Taking advocacy to another level
Most of what we’ve been talking about above is individual advocacy, and this is vitally important.
Individual stories and situations highlight the need for greater levels of change. They help identify areas of concern and issues that can be addressed through further advocacy.
This is when advocacy scales up - groups or individuals working for long-term social change to make sure legislation, policies and practices support the rights and interests of all people who experience mental ill-health, and their families and carers.
When we want to see this type of change – such as in policy, cultural, or organisational change – this is called ‘Systemic Advocacy’.
How to get involved in systemic advocacy
Most of us would love to see the future being better for our children and young people, and for all future generations. We don’t want them to be hampered by the same things that we experience now.
Becoming involved in systemic advocacy is one way to help make this change happen.
Lived Experience Australia is a systemic advocacy organisation. Our work is informed by the issues and experiences of individuals.
We gather this information through surveys, university backed research, and by listening to those who share their stories – their lived experience - with us. Our work is always informed by lived experience, and everyone who works for us has a lived experience of mental ill-health either as a consumer or a carer (and sometimes both).
Our goal is to introduce and influence positive long-term change to policy and systems that support and respond to the needs of those experiencing mental ill-health or distress, and to make sure that their rights are considered and respected and acted upon. We want to ensure that new or improved systems and policies are created with those who are most impacted by them.
To be part of this kind of advocacy, you can start by signing up to our communications. This allows us to let you know when we are conducting research, inform you of when we have completed research studies, and let you know about submissions we make to all levels of government based on the lived experience stories we have gathered. You will hear about training and resources to support you and your loved ones.
You can also get involved in person with our state based Advisory Forums, where you will meet other people who have been advocates or who might have experienced similar situations to you. It’s a great way to not feel so alone when advocating.
Want to know more?
If you are keen to understand more about what it means to become a mental health advocate, and how to do it, Lived Experience Australia has a wide range of training resources available on our website that you can do at your own pace. You can also sign up to our communications there and be a part of changing the mental health system for the better by being part of our systemic advocacy.