Melbourne woman Jessica* is still struggling to come to terms with the debilitating impact of being on antipsychotic medications for long periods.
She started taking them from her early 30s, when she was diagnosed with schizophrenia and placed into various public mental health institutions.
“In the very early days I was incredibly frightened, because no-one expects to end up in a psych hospital,” Jessica said.
She said it was made worse because the medications made her feel like she was being dumbed down.
“I’m not sure people understand what it’s like to take a medication that makes you feel like you’ve lost your intellect, but know it’s still in there and can’t get out,” Jessica said.
“Sometimes I talk about walking through water. And how we all know that if we’re in water in a pool or beach, we can still walk, but it’s really hard to do. And that’s what thinking is like on antipsychotics.”
Jessica said the physical impacts have been long-lasting as well and she was angry about often being forced to take the medication.
“Because I have had these medications for many years and because [I] had the weight gain that’s common with them, I’m more likely than not to die much younger. Probably 15-20 years younger than my other friends,” Jessica said.
“I often think, what does it mean to not have even been told that? To not have the chance to have done something to protect myself from that? And what does it mean that a lot of those medications were forced on me?”
Australia uses antipsychotics ‘at extremely high rate’
Jessica’s experience is not unique.
Figures from the Australian Institute of Health and Welfare show prescriptions for antipsychotic drugs under the Pharmaceutical Benefits Scheme (PBS) increased by 359 per cent over a 24-year period from 1992 to 2016.
Antipsychotic drugs were developed in the 1950s to treat serious mental health conditions including schizophrenia, bipolar disorder and psychosis.
They aim to reduce hallucinations, delusions, paranoia or confused thoughts, but also work as a major sedative or tranquiliser.
Brisbane psychiatrist Niall McLaren sometimes prescribes antipsychotic drugs, but he is also very cautious and says they are being used illiberally.
“We know that Australia uses antipsychotics at an extremely high rate by international standards,” Dr McLaren said.
“The overuse of antipsychotics is a major problem in this country, it will be a bigger problem because these drugs have long-term side effects.
“People that take it in the long term, will die 19 years younger than un-drugged peers.”
It is a scary reality for some people who take the medication.
Perth mother Angela* says she still has to look after the very basic needs of her 42-year-old son because of the damaging impacts of his antipsychotic medication.
Not only does he require 24-hour surveillance and help with basic hygiene, but he also suffers from neurological disorders — akathisia and tardive dyskinesia — which are common side effects of these drugs.
“Probably the worst thing with respect to my son, apart from his physical size, is that he experiences psychosis 24 hours a day. It has a devastating impact on himself, it infiltrates his every waking minute,” Angela said.
She has become a mental health advocate and is trying to educate consumers (people who are in the mental health system) about the side-effects of these medications.
“I’d also like to see drug-free wards, where people, when they first present, get respite with talking therapies. That happens in Scandinavia, but there’s no such thing here in Western Australia or in Australia,” Angela said.
Wide-ranging side effects and challenges with restraints
A research paper by advocacy group National Mental Health Consumer and Carer Forum and Curtin University compiled existing literature about the side effects of these drugs.
One of the researchers, Doctor Kate Dorezenko, says they are far more wide-ranging than people realise.
“Antipsychotic drugs are also associated with weight gain, diabetes, cardio disease. These drugs also cause changes to brain, shrinkage of brain volume,” she said.
“They’re associated with poorer memory, concentration and reasoning and also more symptoms of psychosis.”
The study also raised questions about the role of the pharmaceutical industry in the high prescription rates.
But National Mental Health Commissioner Professor Ian Hickie says the real problem is that there has been too much reliance on medicating mentally unwell people.
“It is much easier to provide medicines. The danger is, when we do that, we don’t provide the other aspects of care and balance,” Professor Hickie said.
The Commission is particularly concerned with the way the drugs can be used to control and sedate patients inside mental health institutions, without their consent.
This is known as chemical restraint, which Professor Hickie warns is a very problematic practice when used by poorly trained staff and or in poorly monitored locations.
“There are appropriate uses of sedation in some circumstances … for briefly inducing unconsciousness to make sure someone is safe,” Professor Hickie said.
“That is quite different from using medication in an ongoing basis in a broader terminology of chemical restraint to try and contain what is said to be unacceptable behaviour and is not therapeutic.”
However, he is adamant that other restrictive practices known as physical restraint and seclusion (putting patients in isolation, sometimes for long periods) should be eliminated.
“We suggested over a decade ago that we should move away from the use of physical restraint, seclusion, custodial forms of care, things that look like prisons, in association with over-use of medication.”
The New South Wales chief psychiatrist’s recent review into the use of seclusion and restraint in the state’s public mental health institutions recommended significantly reducing the practices, and figures from the Australian Institute of Health and Welfare show a decline in the rates of seclusion nationally.
But there is too little data to measure any change in the use of physical restraint and chemical restraint.
However, chief psychiatrist Doctor Murray Wright says the aim is to eventually eliminate the practices across the country.
“If you try and change something by fiat, declaring you must no longer do something that you have been doing for a period of time, you can inadvertently increase risk to patients, staff and community at large,” he said.
“We are all in agreement that we need to eliminate where possible and prevent the use of seclusion and restraint. But the system is not ready to move to a situation of eliminating in all circumstances.”
Seclusion ‘necessary in small number of cases’
Royal Australian and New Zealand College of Psychiatrists (RANZCP) president Brett Emmerson supports a reduction in seclusion and restraint, but believes they cannot be eliminated.
“I work in a mental health service, and two of our staff are injured every week in violent acts and some of our staff don’t come back to work. And that’s why seclusion is necessary in small number of cases,” Dr Emmerson said.
During research for this story, the ABC heard stories from patients who allege they were assaulted or significantly traumatised while in care.
They said this was partly because of restrictive practices.
Professor Ian Hickie said it reflected a culture where staff safety has been the priority.
“People with acute mental health problems are in danger themselves of being assaulted by staff, often poorly trained staff, security staff, or people put in the frontline who have little experience, who only respond in a physical way,” he said.
“Issues relating to sexual assault and sexually inappropriate behaviour have been an issue over many generations … this has unfortunately been a reality in our institutions.”
He said there was a national framework in place to start fixing these problems, but states needed to lead the way.
“We need to see all state ministers committing to public reporting … who are the national leaders, who does it best, who has fallen behind, who needs intervention?” Professor Hickie said.
*Names have been changed to protect privacy.