Let’s talk about psychosis, and the families mental health reform forgot

Introduction by Croakey: Announcing a Lancet Psychiatry Commission on Psychoses in Global Context last year, the authors wrote:

Psychoses affect more than 20 million people worldwide and are associated with substantial impoverishment, premature mortality, stigma, and human rights violations.”

The article paints a stark picture of poor outcomes in high income countries and a dearth of research to underpin our knowledge of the situation in low resource settings.

Australian statistics indicate that about five in a thousand people each year encounter the health system for psychosis yet, as Kerry Hawkins points out in the post below, it rarely features in public conversations about mental health.

Worse still, she writes, it is poorly understood, resulting in stigma for those affected, with consequent increased suffering.

In this, the third article of the Speaking Our Minds series, Hawkins writes from the lived experience of a carer for a family member with psychosis, making a compelling argument for the need to place lived experience at the centre of future research and planning.

Kerry Hawkins writes:

Fifteen years ago in the usual morning rush of getting young children to school whilst getting ready for work I received a phone call from a nurse with a Canadian accent politely asking if I could possibly pick up my family member from an inpatient ward in Canada, where he had been for two weeks since his most recent suicide attempt.

He had left Australia to escape his persecutors trying to kill him. We had not known where he was – in the world – for months as he was careful not to identify his location in case phone calls were being traced.

Prior to him fleeing Australia, I had of course made many futile and increasingly frantic attempts to obtain help from our private and primary mental health systems.

A gap in the mental health discourse

Australians talk a lot now about mental health: of anxiety, depression, eating disorders, and workplace and lifestyle stress. An unrelenting daily slew of sloganeering, apps and websites is fed to us on television, social media, shopping centres and train stations, telling us to talk about it.

But we don’t talk about psychosis. And we never seek out the opinions of people who hear menacing unrelenting voices, who have visions and other visceral experiences to the point where they lose their homes, jobs, and most agonisingly, their relationships with friends and families.

And if we do talk about it, the relentless living hell that is the experience of unsupported extreme psychological distress is usually explained as a brain disorder or disease mitigated by medication, instead of seeking experiential perspectives.

We don’t talk, either, of the failure of our monolithic medico-legal health system (by which, in some circumstances, people are compelled by law to undergo medical interventions, including involuntary commitment) that claims to be the solution to mental health problems, in case we discourage people from seeking help or talking about unusual and terrifying thoughts and feelings.

In fact, our mental health system has no idea how to respond effectively to psychosis.

This means we don’t talk about the cruelty families face when they are encouraged to seek help from unavailable services, or the shock experienced in going to a trusted institution for help and encountering ineffective and unresponsive services.

We don’t talk, either, about the guilt, horror, and helplessness families feel at being made complicit in coercive practices, or the despair of witnessing the slow, inevitable physical health decline of their family member as a result of their medications, the slow estrangement from their own family and friends, and above all overwhelming experience of powerlessness to do anything about it.

To love someone and witness this is a pain beyond description.

The toll on families

Families also live with the impossible reality of desperately trying to pivot between normal family roles – and appearing to everyone else to be a normal family – and the realities of negotiating the ruptures of psychological distress and the practical consequences imposed by the system of being a carer.

We don’t talk about the ripple effect on families’ physical and mental health. We have known for decades that the failure of our mental health system has led to prominent and enduring grief over relationship breakdowns, social isolation and poor quality of life for family members.

Many family members sacrifice their own careers and financially support their loved ones for decades, often drawing down on their superannuation to survive.

An unacknowledged workforce

A report released in 2017 identified that one of the consequences of this system failure is that family mental health carers are by far the largest mental health workforce in Australia, with over 240,000 family mental health carers measured in 2015 providing an annual replacement cost of $14.3 billion worth of care. Most of them don’t receive any carer payment; many of them don’t know of any supports.

Many more families are ‘hidden carers’, including child family members, culturally and linguistically diverse families, and Aboriginal and Torres Strait Islander family/kin.

Exploitative policy settings rely on families stepping in to support family members, often at great financial and personal cost. In doing so, they mask the ineffectiveness of the mental health system.

Gaps in policy and system design planning

Because they are then busy and poor, families are also shut out of opportunities to be heard and to influence policy and system design in appropriate ways alongside those most harmed by the system, their family members.

Ensuring child family member voices are integrated and their needs addressed also is also a neglected critical priority. Omitting the impacts on children of parental psychosis in policy and system design work, is both intellectually unimaginative and morally unacceptable.

This, despite the fact that our medico-legal mental health system manages to simultaneously breach Australia’s obligations under the United Nations Convention on the Rights of People with Disability (CRPD) whilst delivering people with psychosis a twenty-year shorter lifespan, lived with debilitating health conditions.

It also, as The Lancet puts it, leaves people with ‘poor social outcomes, [including] high levels of unemployment, poverty, and homelessness in the decades after the initial contact with mental health services.’

For many families, the introduction of the National Disability Insurance Scheme (NDIS) – an enactment of Australia’s ratification of the CRPD – has made things worse, adding yet another unresponsive government agency layer of negotiating non-existent, unreliable or ineffective services – and removed the paltry tokenistic support funding that had previously been available to families on the pretext that the NDIS would now relieve them of any caring duties.

The NDIS remains psychosocial disability-illiterate and incompetent and so has not lessened demand for family support services.

The narrow biomedical view leads to stigma

So unquestioning are we of the brain disease/disorder explanation of psychosis – and therefore the health system being the answer to it – that when we look at re-designing systems we often look only at the health system and how we can find system solutions within it.

For example, we look for technical fixes so that people don’t having to tell their story over and over, rather than asking hard questions about why people are having to return for the same reasons, a sure sign the service is ineffective.

Conversations about workforce centre unreflexively around how we can quickly grow more of the same workforce and how to reduce burnout, rather than considering that people clearly need different supports and different workforces.

And as others have noted, adhering to the brain disorder/progressive disease model of psychosis (rather than considering the contribution of other factors such as social adversity) has become an alibi cover for the effects of systemic neglect and lack of innovation in the sector.

It has also relegated families to para-clinical roles such as assisting with medication-adherence and repeated medication changes on the promise of the next one being more effective, appointments, and ‘symptom vigilance’.

It means families are more likely to acquiesce to, rather than challenge, poor outcomes, and to attribute relationship breakdowns to the ‘symptoms’ of a disease. The harm this does to relationships and recovery, particularly for child family members, is untold.

The brain dysfunction explanation is also behind the high and persistent levels of stigma and discrimination aimed at people with a lived experience of psychosis.

Stigma means we avert our eyes when we see people in the grips of paranoia or tormented by menacing, terrifying voices, and think it’s OK as a response to sedate them beyond sentience with life-shortening sedatives.

Stigma means it’s OK to put people on $20,000 a year support payments to survive and leave them in group hostels before dying twenty years ahead of the rest of the population.

Stigma means we can’t have honest discussions about risk approaches, and stigma means we don’t demand accountability of our systems.

Stigma means families don’t talk honestly with other families about their experiences in order to drive community demand for better outcomes.

And in a sickening policy twist of the ultimate act of structural stigma during the peak of the COVID pandemic, when all Australians were being reassured by Jobseeker and Jobkeeper payments, those already most impoverished, those most crippled by crushing poverty on disability or carer payments, were not given the same uplift payments as the rest of our community, further entrenching a sense of being unimportant.

Whose voices will we privilege?

Fifteen years on from that heart-jolting morning phone call, nothing has changed for families. Since then, our family has endured more terrifying suicide attempts, lengthy hospitalisations, and housing, employment and financial insecurity.

We have some work ahead of us. We must prioritise a strategically focused, outcomes directed and practical approach to research, led by people with a lived experience of enduring and high impact psychosis and their families.

Progress such as the establishment of a national mental health consumer peak body and a national mental health carer peak body will be critical first step, but for those of us for whom mental health reform forgot, the work needs to be done differently. Starting with whose voices are given platforms in the media.

*Kerry Hawkins is vice-president of Mental Health Carers Australia, a Director of Emerging Minds, a Trustee of Psychosis Australia, President of the Western Australian Association for Mental Health and a 2022 Churchill Fellowship award recipient. She works from a family lived experience perspective at a system reform level.

For assistance:

Lifeline 13 11 14 www.lifeline.org.au

Suicide Call Back Service 1300 659 467 www.suicidecallbackservice.org.au

beyondblue 1300 224 636 www.beyondblue.org.au

13Yarn: 13 92 76  13yarn.org.au

Kids Helpline 1800 551 800 kidshelpline.com.au

QLife: 1800 184 527 https://qlife.org.au/

Check-In (VMIAC, Victoria): 1800 845 109 https://www.vmiac.org.au/check-in/

Lived Experience Telephone Line Service: 1800 013 755   https://www.linkstowellbeing.org.au/

Acknowledgements

The #SpeakingOurMinds series of articles was conceived and organised by mental health and human rights advocate Simon Katterl and is edited by Dr Ruth Armstrong.

It is published to coincide with Mental Health Week 2022 (October 8-15) as a vehicle to privilege the voices of lived experience.

Bookmark this link to follow the series.

The series is supported by Mental Health Carers Australia, Simon Katterl Consulting, Tandem, First Nations Co, and Mind Australia. The supporters respect the independence of the authors and the editors.

On Twitter, follow #SpeakingOurMinds.