‘There’s no Beyond Blue for us’: Sandy Jeffs’ call to improve mental health services
While we’ve become more open about depression and anxiety, schizophrenia has slipped further into the murky shadows. This is what it’s like to live with.
In 2009 the writer and poet Sandy Jeffs OAM chronicled her experience as a schizophrenic in the groundbreaking memoir Flying with Paper Wings: Reflections on Living with Madness. In the years that followed, Jeffs created the show Mad, directed by Meryl Tankard with Elena Kats-Chernin, which performed at the Brisbane Festival in 2012, and published two books of poetry – Chiaroscuro and The Mad Poet’s Tea Party. In 2020 she co-authored Out of the Madhouse: From Asylums to Caring Community? with Margaret Leggatt. The following is an edited extract of the afterword “Homecoming”, which accompanies an updated edition of Flying with Paper Wings. Jeffs, 71, states: “When I reflect on my mad journey, I see, alarmingly, that my adult brain has never known life without antipsychotic drugs! It is a wonder I can still operate, let alone have the wherewithal to write these words.”
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I am in a much better place. I haven’t had any admissions to a psych ward since 2009. And thankfully, I no longer wake to my morning mantra: Top myself? Have brekkie? But my wellness is not without unease or apprehension. On waking, I find myself doing an inventory of my thoughts to make sure they are still there because I have in the back of my mind a festering delusion that Tony Blair has implanted a microchip in my left ear and programmed it to delete my thoughts.
Even though I know in the real world this cannot be true, in a strange, insidious way this thought stalks my sanity like a menacing shade, and the uncertainty bothers me. My voices also continue to be a presence. In a bizarre twist, they have changed the way they speak. They used to hound and harass me with uneducated, crass voices, but in the past ten years they have done elocution and now sound very posh! Nowadays they lurk in the depths of my mind, waiting to pounce. And at night-time they do, when the isolation and loneliness of the darkness leaves a void which is an open invitation to them. I go to bed to their sounds of persecution and denigration most nights. Bed is a battleground, as I struggle with insomnia caused by the ambush of these uninvited intruders. Sleep is a lottery. I don’t know when I go to bed if I am going to pick the sleep ticket or the sleeplessness ticket. It’s like the wiring in my brain has been disrupted and gone haywire and it has forgotten how to sleep.
My MP3 player and its miscellany of music gets a serious workout as a distraction from the incessant chattering. In spite of all this, in spite of my night-time disturbance and Tony Blair’s microchip, there has been a steady improvement in my emotional stability and wellbeing. You may wonder how is this so, but I feel that the power of Tweedledum and Tweedledee has diminished and I live more tolerably with them. Daytime, at least, is quiet and relatively peaceful. My psychologist, Dr H, sees the schizophrenia as lying dormant and me as a much better functioning person.
We have never talked more publicly about mental health or had more fundraisers for it than we do now. When I was first diagnosed in 1976, people certainly didn’t openly discuss their mental health challenges in the media. Now it’s on the lips of everyone: sportspeople who take mental health leave, politicians and celebrities who talk about their mental health struggles, kids who say they are suffering from anxiety. Mental health is even on school curricula. Every second person it seems is running, walking, riding or climbing mountains to raise awareness and money for mental health charities and organisations.
I marvel at how mental health juggernaut Beyond Blue has managed to normalise depression and anxiety, using celebrities as their ambassadors to market hope and recovery. Their PR has been so effective that everyone can relate to their message. In the wake of endless media coverage, people are pathologising and self-diagnosing their sadness and anxiety as depression and seeking psychiatric treatment. The number of people taking antidepressants is astronomical. I have lived with the blackest of moods and know how debilitating and distressing it can be. I understand depression. But while depression and anxiety are relatable, who, without experience, can fully grasp what it’s like to be bombarded by unwanted voices or suffer bizarre delusions?
Sadly, while people have become more open about depression and anxiety, schizophrenia has slipped further into the murky shadows. It continues to be demonised by the media and Hollywood. I can’t help but feel that a diagnoses war has been ignited, with schizophrenia and other complex mental illnesses being pitted against depression and anxiety to win the PR race and public acceptance. Where is the celebrity living with schizophrenia?
What has changed in mental health since writing this book in 2009? What progress has been made? The “Care in the Community” model of treatment, brought into being in the early 2000s after the closure of the big psychiatric hospitals in Victoria, became even more compromised. The system – which relied, I think, on the supposed efficacy of new medications to keep people out of hospital – has failed miserably. The medications weren’t the wonder drugs Big Pharma would have had us believe.
The much-vaunted Crisis Assessment Treatment Teams and Mobile Support & Treatment Teams designed to aid people in their place of choice or their home (if they had a home) never really hit the mark, as they were quickly swamped with an unmeetable demand and were under-resourced, underfunded and only available during business hours. The number of people needing a hospital bed didn’t diminish, and as the pressure on the small public psych wards became overwhelming, only people who were extremely unwell or a serious danger to themselves or others were admitted.
Now, if you are too unwell to be at home but not unwell enough to be in a public psych ward, there is nowhere for you to go apart from the various Prevention and Recovery Centres where there is a limit on how long you can stay. If you do happen to be admitted to a public psych ward, you will almost certainly find these places to be of the utmost, unspeakable torment. Public psych wards are usually placed at the back of a general hospital where, it’s said, the carpet ends and the linoleum starts.
Placing these wards in hospitals alongside renal, cardiac or spinal wards further medicalises mental distress/madness, cementing the medical model of treatment and taking away any notion of holistic healing. If you are a woman, chances are you could be sexually or physically assaulted by a male patient in one of these wards. I have a friend who in 2022 was having a mental health crisis. She went to the Emergency Department of a big hospital and after waiting seven hours she was assessed by a clinician who her told her she wasn’t suicidal enough for an admission. He then told her that she was too vulnerable to be in a public psych ward! That says it all. In the end, she went to a private psychiatric hospital where she spent four weeks and came out with a huge debt.
Almost everyone who goes into a public psych ward finds it so traumatising they never want to go back. Adding to the distress of these wards is the presence of people on ice benders, further complicating an already high-octane atmosphere. They are trauma factories. My mad comrades talk of their experiences of these places like soldiers coming home from the front. These wards do not even pretend to offer the mad a place of asylum in which to recover. There are no curative gardens in which to find respite. Patients are often discharged mad because someone madder needs their bed, leaving carers to bear the brunt of looking after loved ones with complex needs, mostly unsupported and with no resources. If you can afford top-cover health insurance, you can access care in expensive private psychiatric hospitals. But good luck trying to find a private psychiatrist as many have closed their books. And as most of them charge exorbitant rates, it’s more likely only the worried wealthy can afford them.
Some psychiatrists bulk bill patients on low incomes but it’s at their discretion. Many mentally ill people are homeless or end up in jails, which have become the new institutions. Across the mental health system, crisis is endemic. I am not surprised that many of my mad comrades have a deep resentment and distrust of psychiatry and the mental health system. With such failings, it has made some people question whether closing Larundel really was a progressive policy. It was recognised that after 20 years of “Care in the Community”, the model was so broken that a Royal Commission into Victoria’s mental health system was held. It reported to the government in February 2021.
The Victorian Government has committed to carrying out all the recommendations. Realistic or pie in the sky? I was interviewed by one of the Commissioners and offered my opinions, stressing the need for safe, affordable, supported accommodation – a place to call home – for people struggling with mental distress. Among the Commission’s recommendations is the proposal to expand the Lived and Living Experience Workforce (LLEW) in the Department of Health and across the mental health sector. People will bring their experience of mental distress into non-government mental health organisations, workplaces and government departments to advise on and co-design policy and mental health practice. Their expertise is to be valued and remunerated. I look at the job descriptions and skills expected of applicants for these positions and think there is no way I would qualify.
Anyone who has had a long-term debilitating mental illness that has prevented them from working and upskilling would be excluded from these jobs by the skill-set required. These LLEW advocates generally don’t have schizophrenia and may have some or no experience of involuntary admissions to public psych wards. I can’t help but wonder if these appointments are being seen as the panacea for the broken system. It puts a lot of pressure on them to be the rescuers and influence the systemic changes so desperately needed. More importantly, will they really be listened to and consulted in good faith by the bureaucrats when making policy decisions?
I am told a lot of good things are happening in the Department with the LLEW but there is some disquiet. LLEW people on various advisory and research bodies have reported perceived toxic and tokenistic working environments that have caused them great distress. This is not the outcome wanted when trying to reimagine and recreate a kinder mental health system. The rollout of the new and supposedly enhanced mental health system will be overseen by the Mental Health and Wellbeing Commission. Will softer language make a real difference to the treatment of people’s mental distress? Will it make psych wards kinder, more humane, healing places from which people leave better off, not worse off?
How can the dignity and human rights of people be upheld when they are forced to have treatment? Will women be safer? Will the focus be shifted away from medical-only solutions to looking after the whole person and their complex needs? How will it help carers be better supported in their challenging roles? Will the findings and recommendations see the advent of a better, more accessible and efficacious mental health system where people don’t see themselves as psychiatric survivors?
But I worry because the Royal Commission’s recommendations were very medical model-based and didn’t offer much for other modalities of healing. Will this be offset by the Department of Health’s inclusion of LLEW expertise and the co-design approach when implementing the Royal Commission recommendations? Is it possible the mental health system will be truly transformed, and the purely medical approach currently being taken will be defused? We watch with interest.
When I re-read this memoir, I was struck by how sad it is. So much has happened to me over a long period of time. I have been thinking a lot lately about my parents, and realise I never really understood or appreciated how miserable they must have been in their awful relationship. How my mother’s drinking was perhaps a result of her being trapped in a situation over which she had no control and couldn’t easily leave – she had no education or financial independence. Her drinking may have been a form of self-medication to ease her unhappiness. Maybe she was depressed and never received the care she needed.
My mother and father were so tragic – two people caught in a web of hate and self-destruction. I wonder, did they ever ask themselves what their bad behaviour was doing to their children? What I witnessed never goes away. So, how do I feel about them now? After years of unresolved, conflicting emotions, I see them through sorrowful eyes from a safe distance. Even though I am still affected by their legacy, and I can dissolve into a deep melancholy when horrific memories flood my senses, I am less distressed and able to see that was then, and I am in the now, a better now.
If only my younger, troubled self, who carried the baggage of childhood trauma, who was condemned all those years ago to irretrievable madness, had a crystal ball in which to see the future – to know that it would be alright. If only she could have seen the miracle that I am still here; that my brain is still functioning after all the meltdowns and medications I have taken; that I have a balanced life which pleasingly straddles a few different worlds – music, sport, writing and advocacy. I am so grateful that I have managed to keep my housemates Robbie and Dido and all my friends and my Team intact. The other thing that struck me was the absence of anger in the story. I am just not an angry person, and I am not sure why.
Published with kind permission from Spinifex Press. An updated edition of Flying with Paper Wings: Reflections on Living with Madness, by Sandy Jeffs, is out this month priced $39.95
