"Without me, my son would not be here. I am sure that there are lots of people in this situation. Our initial experience of the emergency room at the hospital was disgraceful—that is the only word for it.
My son Tyler initially had a sudden onset of his symptoms when he was aged 25. When he was first admitted to hospital he was questioned by three different people who all asked the same questions. This made him very frustrated and upset. Eventually they put an assessment order on him and theoretically he was detained. You can imagine how we both felt after this experience. Neither then, nor since, has anyone been able to give Tyler a formal diagnosis of his condition. My son seems to have been put in the ‘too hard basket’. His condition is complicated but why can’t somebody at least diagnose it and provide support?
My son presents as a calm, thoughtful and intelligent person, however he has been unable to work for the past six years and has been living mostly with me since then.
Sometime after his initial episode, he was admitted to a residential program that has since closed. He did quite well here, and even started to improve. You can imagine my surprise, that without prior consultation, the psychiatrist in charge of the facility told my son that he could no longer stay there and had one hour to pack up and leave. When my son asked why the psychiatrist simply said, “I have made my decision.” I was shocked by the psychiatrist’s arrogance and the way he spoke to me and my son.
This is a key part of the problem. As my son’s carer I am almost never consulted by psychologists, psychiatrists and support providers. Most of the time my opinion is ignored. My son lives with me, so I have more contact and knowledge of his behaviour and condition than anybody else. I should be consulted more as his illness is quite complex. His diagnosis changes depending on who was treating him.
Housing is a big problem. For a time, Tyler lived in a residential unit by himself and actually coped very well with support. Unfortunately, after 28 days he was sent home, connected to an independent service provider and given a case manager. The service told us that because Tyler did not have a police record, was not violent or using drugs that they were not going to help him! Apart from several letters and text messages from his case manager, to this day the service has not contacted Tyler about any possible treatment and support. They have never even invited him to come in and see them or to arrange a home visit.
To the Royal Commission, I would say that in Victorian regional areas, there needs to be safe, secure housing where people can get support for longer-term residence – not just 28 days. Bendigo is a big region. It needs a central regional mental health facility that is suitable for people with complex needs and provides support with a dedicated case manager that continues long after discharge."
* Names and places have been changed to protect individuals.
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While we welcome you to share your story with us, we are not able to provide clinical advice, referrals or support. If you or someone you know require assistance or need to talk to someone please call Lifeline on 13 11 14.