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‘Like hunting for unicorns’: Australians on the search for adequate, affordable mental healthcare | Health

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Many Australians experience the country’s mental health system as inadequate, dangerous and financially punishing, saying they often feel unsafe in hospitals, are dismissed by health professionals and are hit with prohibitive costs that government subsidies do not come close to covering.

And practitioners in turn have spoken of burnout and their frustration with misplaced funding, inadequate quick fixes, overmedication of patients and inconsistencies and duplication in the system, while acknowledging that many seeking help find the system “deeply traumatic”.

Many who responded to Guardian Australia’s call-out asking readers to share experiences of the mental health system are the face of the “missing middle”, a term often used in reports and inquiries aimed at assessing the gaps in the mental health system.

The Orygen youth mental health service in Victoria says the “missing middle” refers to those who “are often too unwell for primary care but not unwell enough for state-based services”. In other words, their care is too complex for a GP but not severe enough for admission to hospital.

So where do these people go? Some readers told us they had opted out of the system altogether, instead attempting to self-medicate and relying on support from family and friends. Others fell into unemployment and more severe illness. Some reported eventually finding helpful treatment from psychologists and psychiatrists after many years and at great expense.

A public servant working in Canberra described anxiety so severe that he began self-medicating with alcohol, drinking at least a bottle of liquor a night to sleep.

“My nights were racked with horrific nightmares,” he told Guardian Australia. When he attended a local GP clinic to get a mental healthcare plan, required for government-subsidised psychology sessions, he was told by the doctor that he was not eligible because his issue was alcohol abuse, not mental health.

“As I tearfully explained that drinking was a side-effect and not a cause, I was sternly chastised and asked to leave if I couldn’t admit my drinking was the problem,” he said. “On the car ride home, I was in complete hysterics.

“I was screaming and crying so hard I could barely see. I nearly wilfully crashed the car twice. Ultimately, the experience was so negative that I didn’t wish to pursue professional help again. My mental state continued to degrade.”

High fees pose a ‘wicked problem’

People who need mental healthcare in Australia often start by going to their GP. This can be the most affordable option, with Medicare data showing 86 out of 100 visits to the GP in 2019 were bulk-billed (paid for by the government). A GP can assess the patient and make suggestions for treatment, including prescribing medication or organising regular check-ups. Or they can refer the patient to a psychiatrist and write up a mental health plan which allows the patient to claim up to 20 sessions with a mental health professional each calendar year.

But as one reader told Guardian Australia: “Finding a good psychologist or psychiatrist who bulk-bills and has appointments available is like hunting for unicorns while blindfolded.”

Psychiatry costs in particular are prohibitive. One reader reported paying $300 for 20 minutes with a psychiatrist, while another said they paid $900 for the first session and $500 for subsequent sessions. Another reader said her one-hour psychiatry session cost $435, and the Medicare rebate “didn’t even cover half”. Another reader, Jamie, said she had paid $220 and received $76 back from Medicare, but that her initial appointment was $600. Another, Skylar, said they paid a $126.95 concession fee for a 15-minute appointment and received $76.95 back from Medicare.

Each psychiatrist sets their own fees and their criteria for who they will bulk-bill. The Medicare safety net provides extra rebates only once an individual’s out-of-pocket medical costs reach $480 in a calendar year. Extended freezes of the Medicare rebate have only made things worse.

Many psychiatrists do not take on new patients or are booked out for months. For those who need a medication plan or review by a specialist, this wait can prove excruciating. The only other option for immediate help may be to attend a hospital but many patients are not unwell enough and do not want to go there.

“I saw a psychiatrist in December after booking in August – that was the earliest appointment available,” one reader, Megan, told Guardian Australia.

“The cost was $472 for a single session. I was lucky enough to get $300 back through Medicare, but the upfront cost could be very prohibitive if you don’t have access to that kind of money.

“I was diagnosed with bipolar and opted to have a treatment plan sent to my GP so I could be treated by her, which is obviously preferable in terms of getting regular appointments and the cost. But despite chasing multiple times, the treatment plan still hasn’t been sent to my GP and no one knows the correct dosage of medication I should be on, and I’m trying to get another appointment with the psychiatrist to get it sorted out.

“I want to let people know how difficult and costly it is to access these services – I had no idea before I needed them.”

The chief executive of the Consumers Health Forum of Australia, Leanne Wells, said high psychiatrists’ fees “pose a wicked problem for many people living with serious mental health conditions”.

A man sits hunched in despair
One reader told Guardian Australia ‘the experience was so negative that I didn’t wish to pursue professional help again’. Photograph: Alamy

“Too often the people most in need of ongoing psychiatric care are unable to afford the fees of the specialist while also facing barriers to hospital and clinical care because of the chronic dearth of services,” Wells said.

“It is unacceptable that so many, often younger, people have their lives disrupted due to lack of access to the right care that could make a difference.”

Wells said the level of the inadequate Medicare rebate and shortages of psychiatrists in some areas were among the factors that led to high out-of-pocket fees.

“The profession and the government should be showing more leadership in seeking a proactive response to this issue.”

The fees that psychologists charge depend on the type of service offered and the setting in which they work. The Australian Psychological Society recommends a standard fee of $260 for a 45- to 60-minute consultation.

Those who need a little, those who need a lot

“There is no support for those of us who do not need to be hospitalised,” a 50-year-old with post-traumatic stress disorder told Guardian Australia. “The system seems to be set up for the extremes of mental health – those who need a little support, and those who need a lot of support.”

But those who were more acutely unwell and required hospital admission also spoke of inadequate care. They told Guardian Australia stories of feeling fearful while in psychiatric wards, and of a reluctance to return to acute care. But there are few alternative models of care to support them.

Eva, a 39-year-old admitted to hospital after suffering a psychotic episode after being injured during the 2017 Bourke Street attack in Melbourne, said: “It was so confronting and confusing walking through the emergency department in the initial presentation.

“Being mixed in with all the other emergency patients exacerbated my heightened state and made me completely shut down. In the high-care ward I was the only woman. Some of the other patients looked very threatening and dangerous. It was a very scary time. I am still dealing with my memories from hospital, more so than my initial trauma.”

A 26-year-old who was first admitted to hospital as an adolescent with anorexia and after a suicide attempt said she did not remember much of her first admission, “except that I was admitted with adult men, who would sometimes find their way across the ward to me, screaming threateningly”.

“My mother witnessed this, and soon after I began being admitted to a private hospital a few hours away from home,” she said.

“At this hospital, a male staff member used the excuse of my anorexia to check my fingers for signs of dehydration. When holding my hand, he would move it towards his genitals, and then place it against his scrub pants. The easy accessibility of my body through the non-tear gown meant that he could touch my body non-consensually, and there was no way for me to wear more clothing.”

The woman now works in mental health and said there should be separate wards for men and women, and for adolescents and adults, in public psychiatric units.

“The mental health system, for the most part, made me more unsafe. For almost a decade, my trauma was an afterthought. For almost a decade, no one offered specific trauma treatment, even though I had experienced multiple forms of childhood trauma.”

More inquiries, more recommendations

Numerous government reports and inquiries have analysed the barriers of cost and access. Frequently, they have recommended boosting community-based mental health services and increases in staffing at hospitals and psychology clinics.

The final report from a parliamentary inquiry into mental health services, tabled in December 2008, found a system in strife, including “inadequate resources and underutilisation of existing resources, inadequate community-based care, acute care services in crises, inadequate focus on prevention and early intervention, great geographic disparity in the quality of care, and service silos and gaps”.

“Consumers and carers struggled to have their voices heard in the design, conduct and evaluation of treatment,” the report found. The submissions to the inquiry “were depressingly similar” to those presented in a report 10 years earlier.

More inquiries have followed. The final report of the Productivity Commission’s inquiry into improving mental health to support economic participation was made public in November 2020. It estimated that mental ill health and suicide cost Australia up to $220bn a year in treatment, caring costs, lost economic opportunity and lost productivity. Again the commission found treatment and services were not meeting public expectations.

Victoria’s mental health royal commission, which tabled its final report in March, made similar findings, recommending more holistic, integrated and linked services, more person-centred care, improved care for people in crisis, greater support for families and carers, better support for younger people, greater support for people in the justice system and a strengthened workforce.

Just $10.6bn, or $420 per person, was spent on mental health-related services during 2018-19, the latest data available. This is about 7.5% of government health expenditure, down from 7.8% in 2014-15.

A 2019 report from the Australian Institute of Health and Welfare found mental illness was the second largest contributor to years lived in ill health, and the fourth-largest contributor (after cancer, cardiovascular disease and musculoskeletal conditions) to a reduction in the total years of healthy life.

One Brisbane doctor, who wished to remain anonymous, told the Guardian: ‘“As someone who also works in acute-care medicine, I am dismayed at how much money can be poured into medical interventions and equipment, often for dubious indications, yet mental health, which is relatively cheap per unit of time as its main cost is labour costs, cannot be made more of a priority.”

When does reform actually show up?

The co-director of health and policy at the University of Sydney’s Brain and Mind Centre, Prof Ian Hickie, said the May budget would reveal whether the government was serious about reform.

The Consumers Health Forum has also called for a “comprehensive, well funded government response to the two recent commissions”. The federal government did not respond to a request for its plans for a national strategy on mental health.

Hickie said the federal government had made several welcome investments in mental health throughout Covid-19. But he said fundamental problems had not been adequately addressed over many decades, and government investments had often been piecemeal. A report he co-authored that examined mental health funding priorities called on the federal government to invest $3.76bn over four years to address the immediate impacts of Covid-19 on mental health and contribute to longer-term improvements.

A sign points the way to a hospital emergency department
Once initial crises are over, people are released from hospital with no continuing care. Photograph: Jessica Hromas/The Guardian

That funding would cover just a few areas: a national aftercare service to follow up and check in on people after an attempt on their own life; a personalised care service for community mental health needs, particularly for clients in the “missing middle”; nationally distributed complex care centres to provide properly integrated support for GPs and other primary care services; and improving digital health services and properly integrating them with traditional services.

The proposed funding would also be allocated to proper evaluation of services. Hickie said the mental illness response was hampered by a lack of useful outcome data such as the number of admissions for self-harm, the number of hospital admissions for suicide attempts, and the number of people accessing multidisciplinary mental health teams for complex care support.

“The system was bad pre-Covid and it is now even worse,” Hickie said. “The question is: when does reform actually show up? I’ve said before all we get is just more reports and more talk.”

He said it was disappointing that the response to the Productivity Commission report had been for the government to establish a select committee to inquire into mental health and suicide prevention. Yet another inquiry.

“We thought the prime minister was going to announce some sort of action at the end of last year following the Productivity Commission report,” Hickie said. “Now he’s saying he will wait for the parliamentary committee, which is due to deliver a final report by November this year. That’s another year of discussion.”

In that time more people will drop out of care. “They give up,” Hickie said. “We found that particularly in more disadvantaged areas. If you haven’t got money, you can’t arrange care. They get out of the public hospital and get no continuing care. Especially those who can’t pay. We have a tendency then in the public sector to de-diagnose them and send them home with families as there is nowhere else to go. This is the perversity we get into in a dysfunctional system …

“Now it’s been two years at least for the Victorian royal commission to come up with a state-led solution again. At least the commission recognised the system is catastrophically broken and we need to invest a lot of money to fix it, but it’s not clear what the commonwealth might commit to this. The government say they’re in yet more conversations with the states and territories about it all.

“But what does it mean? And when will we get change? How is it going to happen? I’ve been talking about these issues for about 30 years, and I’m still waiting for reform.”

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