Research reveals the daily struggle with psychotic illness

A comprehensive study* of thousands of people with psychotic illness provides compelling evidence of the need to provide more support and better-coordinated community mental health services in Australia.

The People Living with Psychotic Illness 2010 study, the largest of its kind ever undertaken in Australia, found that psychotic illness affects around one in every 200 Australians every year and that 90% of people affected report a deterioration in their ability to function in their daily life – be it cooking, cleaning, managing their finances or working.

‘The report paints a pretty bleak picture for many people with psychotic illness who, despite treatment, continue to experience symptoms and ongoing disability. They also have much greater financial worries, homelessness, unemployment and loneliness, than the general population,’ explains Barbara Hocking, Executive Director of SANE Australia, the national mental health charity which was an advisor to the study.

Focusing on clients of public mental health services, the study found that, despite being in treatment, four out of ten of the 64,000 adult Australians with a psychotic illness continue to experience delusions and a third currently experience hallucinations.

According to Ms Hocking this report, which follows a similar study conducted over a decade ago, provides some encouraging news with more people now experiencing periods of good recovery. In addition, hospital admissions for mental health reasons and involuntary admissions have both decreased by one third.

‘It’s a great concern however that there is a growing gap between the physical health of people with a psychotic illness and the rest of the population, with the finding that almost half of all Australians with a psychotic illness are obese, two thirds smoke and over half have problems with alcohol and drug abuse and dependence.

‘Particularly troubling is the finding that nearly a quarter of people with psychotic illness reported being lonely and one in eight had no friends at all. Social contact is important for all of us. It’s a cruel reality that mental illness so often leads to isolation,’ Ms Hocking adds.

Around half of people with psychotic illness have attempted suicide at some time. This is over ten times the rate in the general population.

Comments from participants highlight their struggle -  ‘I wish I didn't have it but I do so I just have to deal with it. There is no magic wand that will make it go away’ . . . ‘ Acceptance is the hardest thing. Most people live in denial. Once you accept this, it becomes easier.’ . . . ’It is hard some days. Sometimes it just makes you cry.’

‘The study provides a sober reminder that there is still much more to be done to help people with psychotic illnesses live better lives,’ says SANE’s Executive Director, who was an advisor on the study.

Despite the hardship, three out of four people believed their circumstances would improve over the next year. As the authors of the study state, ‘in the face of disability, disadvantage, stigma and social isolation, people with psychotic disorder display resilience and tenacity’.

The study reveals changes in the delivery of mental health services since the previous survey in 1997- 98, principally related to the ongoing, if uneven, shift from hospital to community-based care.

There have also been modest but real improvements including a halving of the number of people homeless in the last 12 months (from 13% in 1998 to 5%) and a 60% increase in the number of people using rehabilitation programs.

‘There remains vast scope for improvement in physical and mental health services if we are to help people with these serious illnesses find somewhere decent to live, work to do and friends to share their lives with. In other words, live decent, meaningful lives.

SANE Australia has identified several areas for action including:

  • Wider education across the community to identify people who may be in need of assessment;
  • More access to psychosocial rehabilitation/recovery programs to continue education and find employment;
  • Focused assistance to help people manage and reduce symptoms and continued research to improve effectiveness of treatments;
  • Regular focus on physical health including targeted quit smoking resources;   
  • Simplify the system so people can connect with the support they need;
  • More education and support to GPs treating people with psychotic illness;
  • More public housing including supported accommodation.

‘This is the challenge for all Australian Governments and there is certainly no room for complacency despite the recent and welcome Mental Health Reform package’ Ms Hocking concludes.

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To view People Living with Psychotic Illness – A SANE Response Click here.

*1989 people in seven sites across five states of Australia participated in this survey. Participants were aged between 18 and 64 years, and had been in contact with government or non government services who have been providing mental health support between April 2009 and March 2010.

** Project Director: Professor Vera A. Morgan, PhD, Head of Neuropsychiatric Epidemiology Research Unit, University of WA School of Psychiatry & Clinical Neurosciences; funded by Commonwealth Department of Health and Ageing and supported by SANE Australia.