Tough Customer

Chasing a better deal for battlers

Allan Fels

• Publisher: Melbourne University Press Digital
• Year: 2019
• Print ISBN:
  9780522874419
• eBook ISBN:
  9780522874426
• Topic: Social Sciences
• Subtopic: Social Science Biographies
• Index: Social Sciences

Allan Fels has never been one to shy away from a fight, especially when the big end of town is exploiting small businesses or consumers. During his twelve years as head of Australia's competition watchdog, he took on banks, airlines, supermarkets and big telcos to make sure Australians were getting a fair deal. Since leaving the Australian Competition and Consumer Commission in 2003, he's continued to champion the underdog. From fighting for the rights of those with a mental health disability, to overseeing the payment of millions of dollars in wages to illegally underpaid 7-Eleven workers, Fels has used his wily political skills and media savvy to get the job done. Along the way, he's also helped radically transform Victoria's taxi industry and investigated grossly overpaid corporate executives. In this fascinating account of his post-ACCC life, Fels opens up about how his family has coped with daughter Isabella's schizophrenia, what it was like to be controversially sacked by 7-Eleven and what he's learned over his fifty years of dedicated public service.

1

MENTAL ILLNESS

A challenge for my family and a problem for Australia

The hardest thing I’ve ever had to do was consent to my mentally ill daughter undergoing electroconvulsive therapy (ECT). I’d had plenty of tough times as head of Australia’s competition regulator for twelve years, including being called a Nazi and being relentlessly attacked by big business. This was much tougher.

Isabella was diagnosed with schizophrenia at age twenty-five and managed to control or suppress it quite well with medication. But twelve years later she suffered a severe psychotic episode. On a bleak autumn day at Melbourne’s Alfred Hospital, my late wife, Isabel, and I accepted the need for ECT—a decision made more difficult by the harsh depictions of it we had seen in movies such as Ken Loach’s Family Life and Milos Forman’s One Flew over the Cuckoo’s Nest.

Even though I’m a naturally calm and unemotional person, that decision was gut-wrenching. Isabel, though very concerned, was more philosophical. She had seen every day for weeks the extraordinary condition Isabella was in—delusionary, suffering hallucinations, unable to grasp reality, and convinced she was acting out a television program. Top psychiatrists were unable to stop her psychosis with medication. Isabel also knew of a case in her native Spain where ECT had worked to snap a depressed person out of a deep psychosis. What neither of us realised at the time, however, was that our daughter’s many weeks of psychosis would continue to affect her for years to come, despite the effectiveness of the ECT.

Now, I’m pleased to say, Isabella lives semi-independently not far from me in inner Melbourne and is a published writer. She’s a lovable, pleasant, charming, sensitive, articulate and intelligent person—although she will never be ‘cured’ in the conventional sense and requires continual medication and much support. She often has a distorted and confused perception of reality, strange obsessions and weak motivation. Because of her disorganised mind, her living skills—cleaning, cooking and so on—are poor and she needs help to cope. She also has a serious shopping addiction that has caused much angst over the years.

Isabella’s illness means that, both as a father and as an economist, I am passionate about mental health policy and how Australia—and the world—can do much, much better. Policies like early intervention, suitable housing and reducing the stigma of mental illness have been a big focus for me since I left the Australian Competition and Consumer Commission (ACCC) in 2003. I’ve spent easily a day a week for the past decade working on mental health issues, including helping to set up five housing projects and chairing the National Mental Health Commission for six years. And now I am a commissioner for the Royal Commission into Victoria’s Mental Health System.

None of that compares with the lived experience of having a family member with a severe and incurable mental illness. No amount of research, economic arguments or policy debates can substitute for what our family—and millions of other families—has gone through in real life.

Isabella

When Isabella was about eighteen months old, Isabel and I started to worry about her. She was withdrawn in the company of other children and behaved eccentrically; by the age of three she had developed bald patches where she’d torn her hair out, and she sometimes chewed on cigarette butts.

Like many parents with challenging children, we hoped this disturbing behaviour was just a passing phase and she’d grow out of it once she went to school. Rather, Isabella’s school years were some of the worst for her and our family, especially when she was a teenager. I look back on them now and feel sad for her suffering. Isabella switched school twice but always ended up being bullied and ostracised. The other kids would imitate her and make fun of her eccentric behaviour and nervous gestures. She was desperate for attention and would break out laughing in a quiet classroom or even at school assembly. At one stage, she became obsessed with another student and as a weird joke ordered a truckload of ready-mixed cement to be delivered to the girl’s house. We were constantly dreading phone calls from teachers about what had happened that day.

At home things were better, but there were still many difficulties for our family. Isabella received love, attention and sympathy from us, but her obsessiveness—a side effect or ‘negative symptom’ of her core illness of schizophrenia—was wearing. It was also tough for her younger sister, Teresa, who initially went to the same school as Isabella.

We now know that these domestic tensions went well beyond the usual adolescent angst, but we had some hopes in her pre-teenage years that the problems might be resolved. Isabella, however, knew something was wrong; she already had limited control over her thoughts and was tormented and frustrated that no one understood her.

Of course, we sought professional help from psychiatrists, psychologists, social workers and others. Isabella’s main treatment for some years was psychoanalysis by a psychiatrist at least twice a week—at considerable expense to taxpayers and to us. It was fruitless and, if anything, made matters worse: the intensive discussions and analysis of her upbringing tended to turn her against her family (who were presented as a source of her difficulties). Our repeated requests for a diagnosis were repelled with the vague advice that she had ‘arrested development’. I was stunned that the psychiatrist, who advocated more independence from us, lent Isabella several hundred dollars at one point. I do not, in general, regard psychoanalysis as useless but for Isabella it was, at best, irrelevant and diverted attention from the more basic genetic physiological drivers of her condition.

Her treatment by psychologists was also unhelpful. Many, driven by their training, see problems in a certain framework and consider that the solution is behavioural therapy, with rational rules and incentives to reward good behaviour and punish bad behaviour. ‘Cognitive therapy’ works well for many people with milder forms of mental illness (and can be a useful supplement to other ways of addressing severe mental illness), but in Isabella’s case it was entirely unproductive.

The psychologists also tended to be dismissive of our fears that Isabella was headed for a life of mental illness, and suggested that greater independence was the answer. The one defence of all these mental health professionals that I would accept is that Isabella was not easy to diagnose—she is intelligent and presents well, and until she was twenty-five displayed no overt psychotic symptoms.

Although Isabella was well enough to finish school and complete an arts degree at Swinburne University, we all still felt that something wasn’t right. University was less traumatic than school for her—mainly because far less attention is paid to unusual behaviour and loners at university—but she was still suffering from being left out.

In that context, her first full-blown psychotic episode, in 1996, almost came as a relief. She started hearing gunshots and other bizarre noises and was terrified that monsters were chasing her, or that her fingernails would be torn off, or that her limbs would be amputated because of gangrene. She was hospitalised for two months and quickly diagnosed with schizophrenia. I can still remember the doctor saying it was certain to be lifelong and severe. The diagnosis, although devastating, meant that finally we could make sense of the puzzle and start proper medication and treatment.

I sometimes wonder if earlier diagnosis and treatment could have made a difference for Isabella. Certainly, if we’d known earlier we wouldn’t have pushed her so hard in some areas. For example, we tried to improve her exam results by hiring tutors, and pressed her to complete her degree in psychology.

While I feel disappointed with the medical professionals who didn’t diagnose her earlier, schizophrenia is a complex mental health condition that afflicts more than 1 per cent of the population in almost all countries. It also has a strong genetic driver. In our case, two of my wife’s sisters have children with schizophrenia. Prevention or early intervention is of value to some people with mental illness, but if it is genetic there are limitations on what can be achieved by early treatment. When, as often happens, the early intervention ends, people with schizophrenia tend to relapse.

In the twenty-three years since her diagnosis, Isabella has had very few psychotic breakdowns. Many people with severe mental illness are constantly in and out of hospital because they don’t take their medication—either because they don’t accept they have a mental illness, or they lack the necessary supervision or are too chaotic to take pills regularly. In Isabella’s case, we’re fortunate that she’s highly medically compliant and takes her tablets every day without supervision.

Perhaps that lulled us into a false sense of security. In 2008 she was struggling with serious side effects from her medication, so her doctor switched her to a new drug that had been tried on several thousand people overseas. Unfortunately, it didn’t work for Isabella (nor many others at that time) and she lapsed into a psychotic state that was much more severe than before. She was hallucinating and had delusions that she and everyone around her were in a television program. After several weeks in a private hospital, her condition was so bad she had to be admitted to the High Dependency Unit of the Alfred Hospital as an involuntary patient. This was our family’s lowest point; we were filled with despair.

Although it’s impossible for a mentally healthy person to understand what it’s like to have schizophrenia, one of the best explanations I’ve come across is in a chapter called ‘The Inner World of Madness’ in psychiatrist Edwin Fuller Torrey’s well-known book Surviving Schizophrenia. He uses first-person accounts to describe many of the common issues for people with schizophrenia, including a flood of intense sensory stimuli rushing through the brain that make sounds louder and colours brighter, jumbled thoughts and an inability to understand what people are saying, an altered sense of self that might make you feel like you’re in someone else’s body, flat or inappropriate emotions such as laughing at sad news, apathy, and strange movements such as jerks and tics. And, of course, the terrible hallucinations and delusions so often portrayed in literature, films and art.

Torrey likens schizophrenia to an old-fashioned telephone operator not putting the right plugs into the switchboard to connect calls properly. His patients describe their confusion and exhaustion from trying to separate experiences into the real and the unreal, and feeling as if their brain is playing tricks on them, making them terrified of their own mind.

Isabella had many of these symptoms during her second major psychotic episode. The only solution was four sessions of ECT, which put an end to her psychosis. The direct side effects of ECT are nearly always minor, most often a temporary memory loss about events immediately before and after the ECT. Isabella left hospital after six weeks, but her underlying condition was still so serious that she was placed in a community care unit next to the hospital, with 24-hour nursing. This kind of care is costly for the government (taxpayers) at about $2,500 per person per week, and there is enormous pressure to move people out. Isabella was there for four years—longer than most—because she needed to be, and because her very insistent parents agitated for the extended care more successfully than many other parents are able to.

The Haven Foundation

Isabella’s stay in the community care unit highlighted for Isabel and me the importance of stable, secure and suitable accommodation for people with severe mental illness—which is why the 2011 opening of the Haven Foundation’s first housing project, a fourteen-unit development in Melbourne, was one of our most satisfying achievements. In 2018, another Haven opened in Frankston; three more have been funded and are being set up. Wesley Mission, to my pleasure, has copied the model in Brisbane, and there is a similar set-up in Queanbeyan, near Canberra.

Haven is one of the many positive things to come out of our family’s decision to go public about Isabella’s illness in a 2002 episode of ABC TV’s Australian Story. Previously, I’d been very quiet about it: only a handful of close friends knew, as well as my personal assistant—who always put Isabella through when she rang, no matter what I was doing. I remember taking a phone call from Isabella when I was waiting in an anteroom to meet Prime Minister John Howard and Treasurer Peter Costello to discuss the GST.

I changed my mind about keeping Isabella’s condition secret because I realised I could use my high profile as ACCC chairman to raise public awareness of mental illness and perhaps help reduce the stigma. After eleven years as head of Australia’s top competition regulator, taking on banks, oil companies, Telstra and other big companies, I was frequently in the media and seemed to be well known to ordinary Australians. I’d often be recognised at restaurants and shops or stopped in the street and told to ‘Keep those bastards honest!’

We discussed going public as a family, and Isabella was in full agreement. We chose Australian Story because the producer, Belinda Hawkins, and director, Mara Bun, were able to present the subject sensitively. To this day people I don’t know stop me in the street and talk to me about the mental illness affecting their family. I subsequently wrote countless articles for newspapers and magazines, went on radio and television, and gave speeches about our family’s experience of mental illness.

After the Australian Story episode aired, several women who also had children with severe, persistent mental illnesses contacted my wife. This group of passionate, committed parents formed the Havenhub Committee of Management. Isabel, Elizabeth Byrne and Carmel Thomas consulted numerous experts, service providers and families and devoted enormous time to devising a unique model of accommodation, care and support.

We established a fundraising property-managing foundation called the Haven Foundation in 2006. Our aim was to develop long-term housing for our children and for other people with severe mental illness, where they could live in self-contained units with 24/7 support from mental health workers and access shared community spaces to interact with each other.

Of course, this idea is heresy to some people, who believe housing mentally ill people together is no better than old-style asylums. But the reality is that there is a big need for this type of project. Governments closed asylums and other institutions during the 1980s and returned mentally ill people to the community. It was a necessary step, but they failed to develop a comprehensive policy approach for adequate accommodation, support and care, as the 1993 Burdekin Report and many subsequent reports advocated.

What this has meant is that large numbers of mentally ill people are in prison, in hospital or homeless. I recently visited a men’s prison where 800 of 1,300 prisoners had a diagnosed mental illness. I know of many public hospitals that discharge mentally ill patients—usually too quickly—with virtually no attention, or token attention, to their immediate accommodation. Many others with mental illnesses are in crowded, substandard temporary accommodation, such as boarding houses, where they feel insecure and are often bullied or treated badly. Many live with their families, which can be physically and emotionally all-consuming. As Torrey puts it, ‘Family members, especially mothers, are often asked to simultaneously be the person’s case manager, psychoanalyst, nurse, landlord, banker, janitor, cook, disciplinarian and best friend.’ The long-term outlook when a mentally ill person’s parents can no longer care for them is of great concern.

It’s not easy to get those with severe mental illness, like Isabella, back into the community. They are seen as obsessive and weird, with strange ideas and a grasp of reality that’s not strong. Isabella had tried to live in a shared house with other people who had mental illnesses, supported by a mental health worker from 9 a.m. to 5 p.m. on weekdays, but it didn’t work. Mental illness does not follow a nine-to-five schedule. Tragically, one of the residents took their own life on a weekend when there were no staff on site.

Housing options for people with psychotic mental illness who are well enough to be out of hospital are limited, and I believe the wrong models are usually applied. This situation leads to relapses and rehospitalisation. One model is a single-person apartment (often in poor surroundings) when in fact the person is not well enough to be left on their own. In many cases this is ill advised. I know of a family who bought a good apartment for their adult child and arranged for twice-weekly visits by care workers, but sadly their child took their life on a day when there was no visit.

Another model is communal accommodation, where a small group of mentally ill people share a house with separate bedrooms but with bathrooms, meals and other things shared on a communal basis. However, many are too ill to be able to live happily together in this situation. They need the independence of a...

Table of contents

• Cover
• Title
• Copyright
• Contents
• Preface
• 1 Mental illness
• 2 7-Eleven and what to do about underpaid migrant workers
• 3 Reforming the taxi industry and introducing ride-sharing
• 4 Overpaid executives
• 5 Where to for competition policy?
• 6 Training top public servants
• 7 Training senior leaders of the Chinese Communist Party
• Lessons and conclusions
• Index