MAUREEN O’BRIEN reels off the stories. There was the young man who killed himself by ramming a car into a tree, after support services had been withdrawn because he was considered well enough to manage without them. Her own son, Paul, who had severe schizophrenia, once took a knife to his brother-in-law but was kept in hospital for only three days. Eight hours after Paul was admitted, the hospital rang to tell his mother to come and pick him up, saying: “He’s had a good sleep now.”
O’Brien refused, arguing that her son needed more help to stabilise his mental condition. He was discharged anyway. A week later he tried to kill himself with an overdose.
O’Brien, who is convenor of a support group for carers of schizophrenia sufferers, talks of another mother whose son “was so out of it” that his one bent in life was to kill his father. “The hospital staff … told the father not to come anywhere near him. A new psychiatrist came in on the Friday and the boy was discharged on the Monday. On another occasion this boy had gone on a suicide run and ended up in a four-car pile-up. They had to helicopter four people out.”
It wasn’t meant to be like this. Victoria has been hailed as a national and even world leader in providing modern mental health services. It has moved away from institutionalisation and into community care faster and more fully than anywhere else in Australia.
No one wants a return to the big, isolated psychiatric hospitals in which people were shut away in Dickensian conditions. But, both here and overseas, people are asking whether deinstitutionalisation of people with psychiatric illness has gone too far, depriving some seriously ill people of the intensive help they need.
In Britain, it was not compassion for sufferers but anxiety over public safety that triggered a new look at the issue. There was a public furore after 150 killings in six years by people with mental illness.
A former mental health worker, Jayne Zito, campaigned passionately for policy change after her husband, Jonathan, was stabbed in a tube station in 1992 by a patient with a history of psychosis and violence.
The British Government concluded that “community care” had left too many wandering the streets and sleeping rough. (In Australia, an estimated 25per cent of the homeless have a psychiatric disability.) It promised a network of nursed “safe haven” hostels and more psychiatric beds. But it did not take up advocates’ demands for legislation to give people with mental illness a right to treatment.
Britain’s swing back to a more punitive and custodial mentality disturbs Australian observers, who worry that deinstitutionalisation, there and here, has been blamed for problems that are really due to inadequate resourcing.
The man with paranoid schizophrenia who killed Jonathan Zito because he thought he was a devil “had also knocked on the doors of services begging to be admitted for days before it happened”, according to Bill Healy, head of social work and social policy at LaTrobe University. “That’s an example of an absolutely tragic event that can be distorted out of all proportion and finish up serving frightening political ends, such as the conclusion that we should lock people up.”
Deinstitutionalisation aims to give people the support they need to live in the community. In Victoria, acute care has moved from old psychiatric hospitals to general hospitals. Mobile support teams and emergency teams treat psychiatric patients in their home. Sixty per cent of Victoria’s mental health resources are now allocated to community care compared with 32 per cent in 1992-3. The number of registered clients of services has increased by 40 per cent, and Victoria now spends more per capita on specialist mental health services than other states ($76.20 compared with a national average of $68.78).
Community care dovetails with human rights goals to treat people with mental illness in the least restrictive and stigmatising way possible. Medically and socially, it is better for most patients and their families. But Australian carers say that while the problem used to be that some people with mental illness could not escape hospital, now they often can’t get in, even when they beg for help. Isabell Collins, director of the Victorian Mental Health Awareness Council, knows of people who have slashed their wrists or taken overdoses in order to get a hospital bed. Says one woman who has schizo-affective disorder (a combination of schizophrenia and what used to be called manic depression): “Basically, to get into hospital now, you don’t talk suicide. You talk homicide.”
Many carers say services are so overstretched that “community care” has become code for “saving money by dumping the problem on families”. It is parents and spouses who often now look after someone having a psychotic episode, and they say they often cannot get crisis assessment teams even to visit.
In 1997, The Age reported on Keryn Gordon, 35, who was repeatedly sent home from casualty units after suicide attempts without any psychiatric assessment. Shortly before her death, doctors advised her to stop her medication. Despite family protests, she was released into the care of her elderly parents while going through withdrawal. She held her mother at knife-point before grabbing two carving knives and escaping in a car. Some time later she was admitted to hospital, where she apparently suffocated herself.
Says O’Brien, “The biggest problem is that they don’t listen to carers when they ring. But this is not just like nursing someone who is ill; many times we are dealing with horrific problems that most of us are untrained to deal with.”
Roma Drummond’s son has had schizophrenia for 21 years. She says it is crucial that sufferers get medical help early in an episode of psychosis to try to minimise the damage of an attack. Yet patients and families are often told that the person is not yet ill enough to justify hospital admission. She says it’s a Catch-22. Experienced patients know they are becoming unwell and have enough insight to want help, but the psychiatric teams who act as gatekeepers to hospital beds often say if patients have insight they are not sick enough to justify admission.
Yet Professor Peter Doherty, director of psychiatry at the Alfred Hospital, says acute psychiatric beds are always available in Victoria. If a particular region is full to capacity, it refers patients out to services in another area. Doherty believes carers might misinterpret as bed shortage a refusal to hospitalise that is based on a clinical team’s assessment that admission is not appropriate.
In 1995 the Royal Australian and New Zealand College of Psychiatrists called for a moratorium on psychiatric bed closures in Victoria, saying that deinstitutionalisation had gone too far. Today’s president of the college, Dr Jonathan Phillips, says there are still not enough beds.
Phillips says lack of community housing is another major problem. “Where do people live who are deinstitutionalised? Most unfortunately, many will be living in sub-standard boarding houses, others will be living on park benches and others will be in jails.”
Up to 2 per cent of Australians will suffer a psychotic disorder, most commonly schizophrenia. John Farhall, senior lecturer in LaTrobe University’s school of psychological science, has researched Victoria’s switch to community care. Preliminary findings from his joint research with Monash and Melbourne Universities show that the vast majority of those released from long-term hospitalisation into community care units have done well. ” I am absolutely convinced that we have a better system than we used to have,” Farhall says. “But … there’s never been enough money to meet the reasonable needs of people with psychiatric illness, so both before and after deinstitutional-isation there were people who are underserviced.”
Isabell Collins says concentration on only the most basic needs can have tragic consequences. “A young man suicided and I was asked by his parents to look at his file to see if there was anything that indicated that the system had contributed to his death. He was a university student who developed paranoid schizophrenia. He was treatment-resistant; he didn’t respond well to the drugs. As a consequence of the illness he had to stop studying for his degree, he lost his girlfriend and his friends, he became homeless and he couldn’t get a job.
“There was not one single sentence in the whole of his file that would indicate that any member of the clinical team looked at the impact on his life of having this mental illness. When he came into hospital suicidal, the care plan was `Contain, medicate, allow to ventilate (talk about his anxieties)’. Collins says the man was allowed leave from hospital, despite his mother warning that he was suicidal. He walked in front of a tram.
Still, there are people receiving help now who did not before. For psychiatric nurse Graham Doidge, who until recently managed a homeless outreach service in the inner city, community care meant the freedom to conduct his consultations in alleyways, parks and the back seats of cars. His team looked after “Ian”, who was living in a city garden. They left appointment notes in a cup under his favorite park bench and gave him his medication injections in the toilet block. Eventually he began to trust them and they coaxed him into moving to a nearby rooming house.
Letting people out of custodial care is only half the answer. Accepting them into the community might take longer. The Reverend Marie Macdonald, a Uniting Church minister who works with residents of rooming and boarding houses in Kew and Hawthorn, tells of an attempt by a young man with serious mental illness to share one of life’s simple pleasures. “Victor loves cappuccinos. One pension day I saw him mid-morning, dressed in his fineries and on his way down to a local coffee shop to buy `a cappuccino, a coffee scroll and a packet of fags’. He looked really pleased with himself.”
She was surprised to see him again soon afterwards. The cafe owner had told him to come back later, when there were no other customers.
Not all the walls have come tumbling down.
Finding happiness in adjusting to everyday life
PSYCHIATRIC social worker Robyn Humphries had never seen patients like some of those she met on her first day as manager of a service for newly de-institutionalised people. “They were feral,” she says now. “Their appearance, their gait, their grooming – or rather lack of – no eye contact, no verbal communication except for a grunt, didn’t relate to each other at all. Pacing, shouting, wandering; some were defecating inappropriately. I was shocked. I can remember thinking, ‘What have I done?’.”
Four years, a new environment and a change of medication later, most of the former patients have changed for the better, some dramatically. Many of the people she met that first day have “graduated” from the community care unit that Humphries runs into more independent accommodation.
A big factor in their improvement was new anti-psychotic medication. They have also responded well to their new homes. They left large hospitals such as Larundel and Mont Park for the Northern Community Care Unit – small houses and units on a large green block in Preston. The 20 patients have 24-hour supervision by 23 staff. The aim is to stabilise their medical conditions and teach them the skills to live more independently.
“You can see the change in people here,” Humphries says. “They like being more normal, going to the shops and out to the cinema or the bank. The old way was a very artificial way of living.”
“Alex” used to be totally directed by staff because he had little control over his behavior. He had poor hygiene, smoked everything from teabags to rolled-up newspapers and vomited often because he ate out of rubbish bins.
Now he is relaxed and cheerful. He plays the piano accordion, can make eye contact and talk briefly about what he has been doing. After a year-long slow-eating program, he can put down his fork between mouthfuls and control his urge to shovel food. Humphries suspects that in a big, noisy setting he might have grabbed his food quickly to stop others snatching it.
Patients can now choose what to wear and eat and do. And their families look at them differently. “You don’t see them any longer as a mad person in a mad place,” Humphries says.
First published in The Age.
