Penny Wright (SA, Australian Greens) Share this | Link to this | Hansard source

Before I took my seat in the Senate last year I worked in the mental health division of the Guardianship Board of South Australia for over 10 years. It was challenging work, and over that time I had the opportunity to glimpse the lives and experiences of people who were battling significant bouts of mental illness. Often these people were experiencing psychosis.

To many—maybe most—in the general public, the term 'psychotic' conjures up frightening and threatening images because of its careless use by Hollywood, in popular fiction, in journalism and in common, if misguided, everyday speech. In fact, psychosis is most threatening and frightening to the person experiencing it. It can bring with it distressing distortions of thinking, perceptions and emotions. Common symptoms are delusions and hallucinations. Violence is by no means common, but confusion, fear and anguish on the part of the person undergoing a psychotic episode may well be.

Through my work I had the opportunity to hear firsthand from people about what it was like to have the condition, and I learnt a great deal. Then, in the last week before the Senate rose for the Christmas break, I attended the launch of the impressive People living with psychotic illness: a SANE response study. Commissioned by the government and partnered by national non-government organisation SANE Australia, which has been working on behalf of people with mental illness for 25 years, it was the largest national survey of its kind ever conducted in Australia and one of the most detailed undertaken anywhere in the world. The report, spanning more than 150 pages, shines a penetrating light on what life is like for the many Australians who have been living with a psychotic illness in the past year. Illnesses like schizophrenia, schizoaffective disorder, bipolar affective disorder and depression with psychotic symptoms may all involve a psychotic element. Interviewed were 1,825 people with psychotic illness, together with many more who provide care for them, including staff in mental health services and non-government organisations, and GPs.

While the data is illuminating, it is also insights from people like Sandy Jeffs which can help to bring the statistics to life. For over 30 years Sandy has been living with schizophrenia. She calls those among us who live with a psychotic illness the 'invisible minority'.

The study puts the number of adult Australians with a psychotic illness who are in contact with public mental health services in a year at 64,000. That is around one in 200, but there are estimates that the real number, which includes those who receive private services or whose illness is undiagnosed, at 25 to 50 per cent higher. By any measure, a large number of Australians conduct their lives in the shadow of this kind of illness.

As to the effects of this illness, Sandy Jeffs, in an interview for ABC's 7.30, was eloquent:

It just shatters your soul, it shatters who you are.

The study's findings tell a compelling story as to why psychotic illnesses leave people shattered. Ninety per cent of people with a psychotic illness report a deterioration in their ability to function in their daily life. Of these, one in three have significant difficulty in looking after themselves and nearly one in five have trouble completing a task as simple as cleaning up their room.

The survey covered many aspects of daily functioning and identity, including income, education, housing, employment, family contact, social participation, safety, health and medication. The statistics in relation to physical health are alarming. People living with a psychotic illness are far more likely to harm themselves and to attempt suicide than the general population. Around half have attempted suicide at some time. This is over 10 times the rate of the general population. Rates of smoking, obesity and chronic conditions such as asthma, heart and circulatory conditions and chronic back pain are also higher than in the general population. One in four is at high risk of cardiovascular disease.

The prevalence of smoking among people with a psychotic illness is a particular concern. Thanks to various measures over the last several decades including curbing advertising, increasing the price of tobacco and the quit-smoking campaigns, the overall number of Australian smokers has been reduced to 25 per cent. By contrast, two-thirds of people with a psychotic illness—66 per cent—are smokers. And, unlike the incidence of smoking in the general population, this number has not changed in 10 years. Clearly, current, general strategies to reduce the smoking rate among people with a psychotic illness are not working and more needs to be done urgently to focus on their special needs. Research is needed to identify what it is about the condition itself or the circumstances in which people with psychosis live that makes them so vulnerable to an addiction which other Australians are successfully overcoming.

Unemployment and poor finances are also common. People living with psychotic illness are at a very high risk of unemployment and homelessness. Only 21.5 per cent are in work, and government pensions are the main income source for 85 per cent of people. One in eight had experienced homelessness in the previous year. Employment for people with psychosis not only provides income but also offers a meaningful and valued role in the community. Programs to help find work, manage work and retain work are crucial. So, too, are programs to provide supported accommodation and affordable housing and to assist people out of homelessness.

But perhaps the most debilitating aspect of psychosis revealed by this study is its corrosive effect on social functioning. Sandy Jeffs spoke eloquently of her experience in an article she wrote for online health blog Croakey in response to the release of the report:

I have a constant struggle to just live with the illness. It is a mental battle every day, not only to get out of bed, but to keep myself motivated and engaged with the wider world because of the paranoia and intrusive hallucinations.

Ms Jeffs describes a large number of people with a psychotic illness as living 'invisible lives in a silent hell'.

We humans are social beings, and it is the findings about the social isolation and loneliness faced by people living with psychotic illnesses that paint perhaps the most poignant picture in this report. We all know the value of personal relationships in our lives. They help define who we are and assure us we are valued. It is comforting to know that there will be people there to support us when things are tough and bleak. Nearly one-quarter of the people surveyed in the study reported feeling socially isolated and lonely. One in eight had no friends at all, and a similar number said they had nobody they could confide in. The picture is similarly bleak when it comes to intimate relationships. While around two-thirds of Australians have a partner, this is true of less than one in five people with a psychotic illness. In the case of males, the proportion is closer to one in 10.

Social contact is vital to human life. In the case of a person with a psychotic illness, friendships and relationships can act as one of the key foundations for recovery. At the launch of the report in Canberra, recovery mentor from SANE Australia, David Braniff, spoke about what a difference the support of friends and family made to his recovery after he was diagnosed with schizophrenia at 25.

To conclude, this study makes hard reading. But, despite the often savage impact of psychosis on so many aspects of health and functioning, let us acknowledge, as the authors of the report do, that 'in the face of disability, disadvantage, stigma and social isolation, people with psychotic disorder display resilience and tenacity'. Despite some improvements since the first survey in 1998, the report starkly highlights that improvements in funding, health programs, treatment and community services are still urgently needed. But for the large minority of Australians—around one in 200 of us—who are living with a psychotic illness, small things can also make a difference. Reducing stigma and misunderstanding through increased public awareness and caring is crucial. This is something that each one of us can actually offer in our everyday lives. In David Braniff's own words:

'Because so much of the pain and disadvantage is social, it shows that the whole community has a greater potential to assist than it may have previously thought.'

I look forward to the day when the description 'psychotic' evokes not Hitchcockian images but understanding and acceptance and an outstretched hand.