Katherine's story*

"My son Jack was diagnosed with schizophrenia in his early 20’s; he is now 33 years old. He has never accepted this diagnosis, is not fully aware of his condition, and is resistant to taking his medication. When he is well, Jack is a functioning individual.

In the early days of his illness he was treated through a youth mental health program and this led to good results. But after the age of 25, he could no longer access the program and his condition deteriorated. The current system – hospitalisation, followed by release on a community treatment order then discharge from the system with no further follow up – often fails. The ripple effect of this is huge. For every person with serious mental health issues, the effects on carers, employers, family members and members of the community are immense.

There is a big problem for carers in the way patients’ human rights are prioritised in the system. How can someone who has profound mental health issues make safe decisions about taking their medications or whether they need to be hospitalised? It is often the carers who have a much clearer idea of what the patient’s condition is and what the patient actually needs in terms of treatment. I can accept that we respect a patients’ human rights but does this mean that we let that person self-destruct?

It is also my experience that you very rarely will get a health care professional in the Crisis Assessment and Treatment Team (CATT) who displays any empathy for either the patient or the family carer. They give a strong impression that they are just ‘doing the job’. You never know when the team is coming, or how long it will take for them to arrive. Often, a different team turn up at each incident and they work through a long question check-list which we have all been through countless times before.
I would strongly recommend that the Royal Commission considers the following measures to help improve the system.

  1. One thing that was highly effective and helpful for Jack was family support services. Not every area has these, but we were lucky enough to be in one that did. Every area should have at least one dedicated family support person who can assist the patient and the family to access the system and navigate their way through it. The officer can also help advocate for the patient with health providers and help ‘translate’ what the provider is saying to the patient and vice versa.
  2. There needs to be better and more effective training for mental health care providers on how to treat patients with acute conditions such as schizophrenia. Over and over Jack and I have found that many providers don’t have particular knowledge about the symptoms and consequences of really acute mental health conditions and tend to lump them all together. Better training, especially among providers who might have the first contact with patients, is essential.
  3. Adult and youth facilities for people suffering from acute mental illness are dismal, drab, and depressing. Couldn’t something be done to make them more cheerful and welcoming? I think in many cases the drab nature of these facilities exacerbates the patient’s condition.
  4. A better cultural understanding of how families enhance the process is needed. Their opinions, experience, knowledge and commitment should be properly utilised. Providers should take this strongly into account rather than ignoring or dismissing it. It is really the system that needs to change here."

* Names and places have been changed to protect individuals.

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Family and friends supporting someone with mental health issues can call Tandem’s Support & Referral Line on 1800 314 325