Community Participation

Because of the nature of psychotic disorders, strategic alliances with stakeholders are considered particularly important for attracting long-term funding for research.

Patients have been stigmatised, and their disorders and needs misunderstood on a scale unequalled by any other diseases. It is not hard to see why: the symptoms are difficult to describe to the non-sufferer, and they are readily misinterpreted as self-inflicted, or to reflect moral weakness, or even to be simple laziness.

There are no laboratory tests to tell who has psychotic disorder and even the legitimacy of the diagnosis has been questioned. There are no plaster casts, shaven heads or wheel chairs to objectify the disability. Indeed, the disease is usually brought to the public’s attention through neglect or treatment failure – in the form of the homeless ‘bag lady’ who inhabits the inner city; the gifted young person who inexplicably becomes an incorrigible drug addict; or sadly on occasion, the perpetrator of a senseless or macabre assault.

Tragically, in about half of patients, the disease prevents the patient appreciating that they have an illness. Understandably, many not only reject the notion that they need treatment and services, but they cannot understand why they need research and do not lobby for it. We must advocate on their behalf and with them.

The Hidden Disease

Compounding the impact of poor insight on effective self-advocacy is consumer resource limitations. A problem with psychosis is that its full impact is not obvious until early adulthood – an age when the community expects people to look after themselves, but when patients have few resources to do so. The resources of families are rapidly exhausted by the illness of their sick relative. Hence, patients with psychosis do not attract the paternalistic sympathy that sick children do, yet they and their families are usually unable to lobby effectively for themselves. Moreover stigma inhibits relatives making public that psychosis affects their family.

Psychosis is a ‘hidden’ disease, encouraging the general public to conclude that these disorders are rare and will not affect them personally, and that research is not a priority.

The true picture could not be further removed from this perception. Estimates of the lifetime prevalence of schizophrenia, schizoaffective disorder, schizophreniform disorder, bipolar disorder, psychotic depression and other psychoses, are in the order of 2-3% of the general population. These figures can be doubled when the non-psychotic disorders genetically related to the psychoses are added – all of which typically have their onset in adolescence and produce lifetime disability.

Though few Australians (4%) think mental illness is a major health problem (Highet et al, 2002, Med J Aust, 176, S63-68) the reality is that mental disorder is among the top three public health problems today – and by 2020 is predicted to represent the single most costly health sector.

Bringing Psychosis Out of the Shadows

APRN will support a consumer development program with a particular focus on the creative and artistic abilities of patients and their relatives. This consumer program will include regional arts and crafts workshops for consumers, and arts and crafts exhibitions, competitions, and prizes in each state and territory. These state-based competitions will build to a national arts and crafts competition and a prestigious national creative arts prize.

The aim of the consumer development program is to convey an image of consumers as valuable members of the community worthy of our greatest compassion. The time is right for rapid change in the public’s attitude to psychotic disorder – mainstream films such as "A Beautiful Mind" and "Shine" have prepared the community for this change.

However, much of the community’s attitudes regarding psychotic disorders are still shaped by ignorance and misinformation. APRN will have the information and credibility to support major community awareness campaigns aimed at turning around these views.