As a consequence of their mental illness, our sons experience extensive psychosocial disabilities, and they live extremely limited and isolated lives. Their lives are now full of despair and lost opportunities.
My sons have anosognosia, a very common condition in people with schizophrenia, which means that they do not understand that they have an illness. This has been a significant barrier to them receiving good services and supports. They do not have the capacity to seek treatment of their own accord, to advocate for themselves, or to drive the care and support they so desperately need.
One of my son’s complex needs, including his lack of insight and very disordered eating patterns, qualify him receiving twice daily support from a district general nursing service, to help him to manage his insulin dependent diabetes, which was caused several years ago by the antipsychotic medications he takes.
My sons have not worked since the onset of their illnesses and both are unable to develop and maintain effective personal and social relationships. Despite this, they receive no support whatsoever from community mental health services to assist with independent living in the community. They both depend on my husband and me to assist them with all of their activities of daily living.
We are now aged pensioners and supporting my sons daily impacts quite severely on our own health and wellbeing. We are extremely concerned about their future when we are no longer around to support them and we therefore anxiously await an ideal placement.
Our sons are not alone. I have been an advocate in the mental health area for many years both locally and nationally. There are so many people with severe and enduring mental illness and psychosocial disabilities who are not receiving the support they so desperately need to enable them to live an independent and contributing life and they remain marginalised in the community and suffering very poor health.
One of the barriers is the requirement of alleged “recovery-oriented” services that clients “must fit into packages of care” and that they must have the capacity “to have goals” and to “drive their own care”.
I believe that psychosocial disability is widely misunderstood by the whole community and that mental health services across Australia have much to learn about how to provide the appropriate support to this population of people.
It becomes very obvious if you compare the lack of community support received by my son, from mental health services, with the ongoing support delivered by the nursing service for his physical health. Peter does not believe that he has a mental illness or diabetes. And yet, the nursing service have managed to overcome the barriers, and have instigated an innovative way of supporting him, which suits his individual needs.
The ongoing grief for parents of a child with severe mental illness is severely compounded by lack of services and supports, and the stigma and discrimination which marginalises them in the community.
We must lobby for better community support and appropriate supported accommodation and put a stop to crisis-driven service delivery with eternal dependence on hospital beds.