The lived experience

A better life for people living with mental illness means no stigma, having friends, being part of something and looking forward. 

Photo of Mark

"Helping people to find the right combination of services, treatments and supports and eliminating discrimination by removing barriers to full participation in work, education and community life is the key to the promotion and adoption of a recovery-oriented culture within mental health services."
National Framework for Recovery-Oriented Mental Health Services

Read Mark's story - he lives with mental illness and is supported to live in the community.

On this page

What makes a better life?
'Sally' - a story
Who are we talking about?
'Ralph' - a story
Why has it been so tough?
The research tell us
What is important for people living with mental illness?
'Tom' a story
How we can make things better
I can get there

What makes a better life?

Living a better life is a meaningful goal for all of us, whatever our circumstances and experiences. But if you suffer from severe mental illness, a better life can seem out of reach.

It’s not about economic productivity. It’s about not being stigmatised, socially isolated and lonely. It’s about having friends, someone to love, something to do, something to be part of and something to look forward to.

We need to find new ways to promote social inclusion, meaningful participation and genuine community-based care for people with severe mental illness so that they can choose what’s right for them to create the better life they want and have a right to.

 'Sally' - a story*

Sally is 43 years old and has bouts of depression followed by periods when she is quite well and able to lead a normal life. She hasn’t had frequent contact with mental health services but she has been prescribed medication by her GP and has received a mental health plan which has never been reviewed. As a side effect of her medication and mental state she is very overweight and her physical health is poor. She’s able to hold down a job but her colleagues avoid her and she has few friends. Her family relationships are strained. She does not receive regular mental health care when she is unwell. It’s a sad reality that if Sally had attempted suicide, lived in a different postcode, or if she had children or other dependants, things would be different.

Who are we talking about?

About 3% of Australian adults live with severe mental illness. About half of these have a psychotic illness or bipolar disorder. The rest are mainly living with severe depression or anxiety disorders.

People on this journey often experience difficult conditions, such as physical illness or drug and alcohol issues, alongside their mental illness and this makes their situation more complex.

Homelessness looms large because we’re not as successful as other OECD countries in getting people with mental illness into work.

For some groups, access to mental health care is unacceptably poor, as in the case of some Aboriginal communities where the incidence of mental illness is higher than in the general community.

Many people, especially in rural and regional areas, have a long wait for services or don’t get any treatment because the right mix of services isn’t available.

There is also a significant impact on friends and loved ones who are carers and provide support. Their own health and welfare, as well as their employment and social participation, are often compromised.

The diversity of people’s lived experience of mental illness and services challenges us to make sure those services are integrated across agencies and sectors, individually tuned and designed to stick with the consumer and their families so they don’t fall through the cracks over time.

 'Ralph' - a story*

Ralph is a homeless, unemployed man with severe and persistent mental illness. He attends a clozapine clinic. He has a range of conditions that affect him at the same time so he experiences involuntary treatment from time to time. Last year he was admitted to hospital three times. While Ralph has been referred to community mental health – and some non-government – organisations, nobody has checked if he is attending these services or if he has had any help with his housing needs.

Why has it been so tough?

We still focus on tangible, more easily measured issues such as dollars spent and bed numbers rather than on actual outcomes for people living with mental illness (consumers).

Despite a notional shift away from the idea of institutional care, there are still nearly 900 funded beds in stand-alone psychiatric facilities.

These account for about 20% of the state’s mental health budget. More broadly, most of our mental health budget goes into hospital-based, crisis-driven care.

This is despite findings that nearly half the people occupying acute mental health beds in Australia could be treated effectively in other settings if alternative services were available.

Genuine, community-based mental health care hasn’t materialised. We spend less on non-government mental health services than any other state or territory.

The unintended but negative consequences of relying too heavily on acute hospital-based mental health care are that consumers:

  • lose hope and confidence
  • become isolated from community supports
  • lose functional capacity, such as housing, and
  • are more likely to be stigmatised.

The research tells us

Image showing statistics for people with mental illness

  • Schizophrenia is the most common form of psychotic illness - 47% of people with a mental illness
  • Schizophrenia affects 56% of males with a psychotic disorder and 33% of females with a psychotic disorder
  • 63% of males and 42% of females with a psychotic disorder have been assessed as abusing or dependent on illicit drugs
  • Mean age of onset of mental illness for men is 23 years, for women is 24 years
  • 1 in 10 males and 1 in 4 females with psychotic illness are married or living in a de facto relationship
  • Government pensions are the main income source for 85% of people with a psychotic disorder
  • 58% of males and 39% of females with a psychotic disorder have been assessed as abusing or dependent on alcohol.

What's important to people living with mental illness? 

  • Access to servies
  • Choice
  • Culturally appropriate
  • Empowerment
  • Partnership
  • Peer support
  • Person centred
  • Recovery
  • Timely assessment

 'Tom' - a story*

Tom is 32, single and has a Chinese father and Irish mother. He’s lived in Australia since he was eight years old. He had started university with some ambition but dropped out after the first couple of years. He recently broke up with his girlfriend after a relationship that lasted seven months. His relationships with his family have deteriorated and he regularly lashes out at them. Tom is unhappy, unemployed, sleeps a lot and has few friends. He drinks heavily and uses drugs often. He recently got into trouble with the police for driving without a licence and possessing a small amount of drugs. He does have a mental health plan but it hasn’t been reviewed nor has he been seen by any public mental health service.

How we can make things better

Living a better life is a meaningful goal for all of us, whatever our circumstances and experiences. But if you suffer from severe mental illness, a better life can seem out of reach.

The focus has to be on supporting recovery, self-determination, enabling mental wellbeing, people’s strengths and resilience as well as building networks of support.

Mental health must be a partnership between people with lived experience and their people-to-people networks together with the support of a full range of voluntary, community, social and health services.

And consumers must have 24-hour access to important services. The partnership depends on shared consultation and planning among consumers, families and carers, and providers and practitioners.

Mental health care systems need to balance a duty of care to provide protection and a duty to human rights and empowerment.

I can get there

  • I can choose what's best for me now: Even though I experience episodic or recurrent severe mental illness, I won’t need to go to an over-burdened hospital emergency department if I am assessed and given advice quickly and if the links to intermediate levels of support are better.
  • Support me when I need it most so I can be safe: If community-based services get better at helping me when I’m in an acute phase, I probably won’t have to go to a hospital emergency department.
  • Work together so I can be active, capable and hopeful: I don’t need to stay in hospital for a long time but I get stuck there because I don’t have a decent place to live. So if the community and agencies work and plan together I’ll be able to leave hospital, focus on my wellness and recovery and make a better life for myself.
  • I can stay in my community with a little help: Even though my mental health needs are long term and severe, the truth is that many people like me don’t really need to be in a secure institution, or even benefit from it. So a good community-based situation would really enable me to achieve and live a better life.
  • Work as part of a team so my health and social needs can be met: I can participate and be happy in my community if my health and social needs are met but to get that happening, health, social and other services have to work as a team to make sure the right skills and resources are integrated and available right there in the community.
  • People who've been on this journey before can really help me: I’m not the only person who knows what this journey is like so it would be incredibly helpful to work with people, my peers, who’ve also travelled this path and can share the wisdom that let them choose their better life.
  • The whole community benefits from being supportive and working to stay healthy: Supportive environments in communities, workplaces and social settings in general benefit everyone, not only people like me who have a mental illness, because wellbeing flows to the whole community and makes for a better life for us all.

**This composite story describes what the experience of someone on this journey might look like.

Related links

Strategic Plan and Report

References

Read more personal stories from people living with mental illness, carers, nurses and other health professionals

Source material for content on this page is from the Living Well Report

Last updated: 5 April 2017

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