What could you expect if you develop schizophrenia? Your relationships and employment prospects would take a huge hit. Your risk of physical ill health would sky rocket. You would very likely experience discrimination in the general medical system, which will compound your physical ill health. You may suffer from distress, fear or loneliness that has you reaching for cigarettes, alcohol or other drugs. There are medications that may help your symptoms, but they won’t cure you. They will also make you feel sedated and may lead to the ballooning of your body mass. You may be lucky enough to have friends or family members to care for you and make up for the deficits in your ability to carry out day-to-day tasks. Your carers, though, will inevitably find themselves exhausted, worried and grieving for the loss of a loved one who is not actually dead. Carers may also find themselves unable to share their troubles in any meaningful way. It is this isolation that Dr Anthony Harris describes as “a burden that cannot be shared”.
Dr Harris is an Associate Professor of Psychiatry at the University of Sydney’s medical school. He is also a practising psychiatrist of many years experience treating patients with psychotic illness, and the president of the Schizophrenia Fellowship of NSW.
The Schizophrenia Fellowship is an organisation that advocates for sufferers of schizophrenia and their carers. It seeks to educate the community about mental illness and fundraise to provide sorely needed practical and emotional support programs. As one of the founding clinicians of the Parramatta-based Prevention, Early Intervention and Recovery Service, Dr Harris can look at the needs of people living with mental illness and distill them down to a few key principles. While the provision of quality clinical mental health services is important, Dr Harris argues convincingly that it is a bit further down the list than most people think.
First and foremost, people with schizophrenia need “to have someone to love and something to do”. Almost all of us derive our meaning in life from our relationships with others, and our daily occupations. Paid work is very important. Yet so many sufferers of schizophrenia are left on an inadequate pension with very little support in finding and keeping appropriate employment. And so the separation widens between those who can participate in society, and those who exist outside its margins.
The key challenges for the doctors, nurses and other health clinicians working with sufferers of mental illness, according to the veteran Dr Harris, are coping with the realities of always-stretched-and-stretched-even-farther resources and a heavily bureaucratic health system. Patients and their families value having some consistency in their care – for example having the same doctor over the long term, someone who can get to know them.
The NSW Mental Health Act 2007 is a mixed blessing of a document. It has at last incorporated the rights of carers – an important step forward. Balancing the rights of individuals with their need for care and control will always be a challenge. Dr Harris points out, though, that there is a certain conservatism to the current Act, which focuses on immediate risk to the patient, rather than the more pertinent issue of whether they are competent to make decisions about their own life and health.
The importance of the role played by families cannot be overestimated. Dr Harris reflects that those young patients of his who are “alone in the world – and many of them are – are at a profound disadvantage”. Anything could happen to them, really, and none of it good. So perhaps we should all pause and consider the carers in our community – for they are often all that stands between sufferers of mental illness and the cruel world. After all, it is Mental Health Month.
And how do we want to care for the mentally ill among us? We know we don’t want them shuffling around institutions for life. We’ve left that behind, thank goodness. Nor do we want them living just as apart from society in a Department of Housing flat. You might be surprised how easily “they” can become “you”. Or someone you love.
