Community treatment orders (
CTOs) were introduced in Victoria under the
Mental Health Act 1986 and remain an option under the
Mental Health Act 2014. Compulsory treatment in the community is enabled by mental health acts in other Australian states and territories. Having a CTO means that clinicians can provide treatment without consent for individuals with severe mental health problems who are living ‘in the community’. If a person on a CTO does not follow the treatment then he or she can be forcibly sent to an inpatient unit. Although CTOs are used throughout the world (including the United States, some Canadian provinces, New Zealand, Israel and England, Scotland and Wales), CTO use in Australia is high by international standards. There have been concerns about the particularly high rate of CTO use in Victoria, especially in the context of insufficient evidence about the effectiveness of CTOs and because arguably they do not conform with human rights obligations under the
United Nations Convention on the Rights of Persons with Disabilities.
Of the people we spoke to, only seven had experienced being placed on a CTO. Several expressed concerns that being on a CTO, especially for long periods of time, could interfere with recovery because of the negative impact on people’s sense of hope and self-efficacy, both of which have been identified as core aspects of personal recovery. While there were aspects of being on a CTO that people found very upsetting, and most people who had experienced being on a CTO felt that it was wrong to be ‘forced’ to have treatment, it was also recognised that some people could be very unwell and that a CTO could be helpful to them for a period of time.
People described being put on a CTO when they refused to comply with medication prescribed by a doctor. Some people talked about not wanting to take their medication because they didn’t think they needed it, or felt it wasn’t making a difference. Others refused medication because of its actual or perceived side effects (see Medication: Choice and non-compliance and Medication: Effectiveness and side effects).
Cindy had a CTO ‘slapped’ on her when she refused her ‘horrible’ medication.
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And when I tried to refuse to have this horrible medication they had me on they slapped a community order on me. So legally I had to take this medicine or I could go to jail or whatever the threat was. So I didn’t have a choice in what was happening to me at that time.
And how did that make you feel?
Oh that was awful, because I didn’t want to even be on medication. I was still in denial that I even needed it – still am. But because, you know, I’m trying to do what they need me to do so if I need help ever they’ll know I take them seriously and some people who should be on medicine deny it but they actually should so maybe I’m one of those people too. I don’t know, but I don’t think I have schizophrenia anyway and I don’t think I’m delusional but someone professional thinks I am.
And so back then when they put you on the Community Treatment Order, and you say the drugs were terrible, what were the side effects?
Side effects, well one of them I really remember hard because it was making me rock from side to side when I was standing up, dribbling. I was just a physical mess. I looked awful. I couldn’t go out.
And was this the one where they were…
Yeah they were injecting me yeah. Risperidone, horrible drug, yeah it’s very harsh.
Luana felt her psychiatrist justified having her on a CTO because she had been angry about the upsetting side effects of her medication and wanted to reduce the dose.
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Yeah, I spoke to a staff member from [mental health organisation] who was really good and helped me in what to say to the psychiatrist. Because even though you know I’m an articulate person and I’ve studied a university degree and worked in the public service, it’s very hard to know what to say to the psychiatrist. Because they’ll, you know, use any bit of emotion in some instances against you.
When I was trying to get off my CTO the previous time I’d been to see them, I’d been quite argumentative about lactating. So I’d been saying that I wanted my medication reduced to stop the lactating. But there was an argument, so they used that against me and said, “Oh, last time you came here you were angry.” So try – as trying to sort of justify the CTO and I thought – I wasn’t just lactating a small amount, it was quite a large amount and it was an embarrassing side effect.
So that’s why I was, you know, came across as angry. But yeah, to use that emotion against me you know was really – I thought that was quite unfair.
Absolutely.
So luckily I was told what to say to [mental health organisation] to appear, you know, like I was calm and in control.
Some participants said they thought they had been placed on a CTO as a way of being punished for being non-compliant with medication. Michelle described taking ‘control’ over her medication by spitting it out or breaking her tablets in half, but said when her psychiatrist ‘cottoned on’ to this, he put her on a CTO.
Being ‘forced to take medication’ was upsetting for people. Jenny, a support worker in the mental health sector, said being forced to have treatment could negatively impact on a person’s ‘sense of who they are’ and could be ‘very bad’ for them. Susana described being given a letter saying she was being put on a CTO by her Crisis Assessment and Treatment (CAT) team after she left hospital but said the meaning of it ‘wasn’t really explained’ to her. She recalled the letter stating that she was a ‘threat to the community’, which Susana said made her feel ‘like a criminal’.
For those who had been in hospital, a CTO could be seen as a way for clinicians to extend their control over the person as they went back into the community. Some people saw it as an extension of their hospital treatment. Simon said, ‘I was involuntary [in hospital]… well, they extended it into a CTO when I left’. The threat of a CTO was also perceived by some people as a way for medical practitioners to exert pressure on them to comply with treatments while in hospital. Chris hadn’t been on a CTO but when he was in hospital, he said his case manager told him, ‘if [you] don’t take [your] medication and follow the plan as prescribed to the most finest detail, [I’m] going to put [you] on a CTO… make [your] life miserable’. Gurvinder agreed to a CTO after he left hospital and said, ‘after you’ve been in the psych ward for six weeks, you’ll agree with anything to just leave for a bit’.
A few people challenged their CTOs after they left hospital. Simon felt he was wrongly given a CTO when he was discharged from hospital. In hospital, he said mental health practitioners had refused to accept he was transgender and told him it was ‘all in [his] head’. They stopped his hormone treatment, certified him and extended that to a CTO on his release. He challenged the decision and the Mental Health Review Board (in 2014 the Board was renamed the Mental Health Tribunal) agreed there was ‘no valid reason’ for keeping him on a CTO.
Some people who experienced feeling very unwell saw the CTO as an important aspect of their treatment and didn’t think it was problematic.
Gurvinder ‘didn’t mind’ being put on a CTO because he didn’t want to experience hearing voices and being suicidal again. He felt the CTO would keep him ‘on the straight and narrow’.
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Can you tell me about what it was like to be on a community treatment order?
I didn’t find it that onerous. I think that the Community Treatment Order, well for me, all it was was just getting an injection every two weeks and see my psychiatrist pretty much – the one that I was appointed to and/or the registrar, whoever it was. I didn’t fight it because I didn’t want to go back to the voices. Because that was, I’ve never had a life experience like I’ve had, those few days when I was suicidal and hearing that many voices. I’ve never had anything even close to that.
When I was put on the Community Treatment Order I was like, ‘Oh okay’, you know. ‘This’ll keep me on the straight and narrow’. So yeah, that was a good thing, sort of thing for me. Like I didn’t really mind it, you know.
And because I live so close to the clinic it wasn’t really a hassle for me. So I’d just walk down, have my depot, talk to the psychiatrist and go, that’s it. And because I had a lot of spare time, I wasn’t doing anything. That, you know, kept me busy for a little bit. So I didn’t really find it really strict, sort of thing. Yeah.
But what do you think was the reason why they put you on one and perhaps…
I think my history of non-compliance. I think that might have been a reason. I believe that’s the strongest reason that they put me on it, because of my non-compliance with medication in the past. For years I hadn’t been complying with my medication.
Charlie thought forced medication could be important to get people well again. When she was on a CTO the doctors made treatment decisions for her until she was well again.
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And that’s important that people aren’t forced into it?
Forced medication? I’m unsure whether to say forced medication is a good thing or not. Yeah, when you get to that lowest point, you really need someone to step in, you really do. I’m talking about the lowest point and you can build from there and start making those choices yourself.
So there is a time when it’s helpful to have someone say nope, this is going to help?
Yeah, you’ve got written in that paperwork about treatment orders. Yeah, I was on a treatment order. I’m unsure about how long for, probably two or three years, and those occasional meetings with professionals, and myself, they’re very helpful. They listened, but they did make that decision for me meeting after meeting, until there came a day when, yeah, they said, “You’re fine”, so that was good.
Even when people didn’t like taking medication, some acknowledged there could be positive aspects to having regular contact with medical staff or interacting with other patients taking medication. When Susana went for monthly visits to the mental health clinic for an injection under a CTO she was ‘a bit scared’ because she was used to taking tablets and didn’t think she was ‘really sick or should be taking something that’s not good for you’. But when she saw others taking medication she thought it might be ‘a good idea’.
Susana described being given daily tablets as part of the CTO. She didn’t want to take them because she didn’t think they made a difference but she found the daily visits ‘kind of helpful’.
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Then you’re kind of in a situation where you’ve gone off the medication and things have escalated. Things have escalated a bit and then you’ve got the, this other clinic with the people coming daily…
Yeah daily.
daily to, and is it…
Administer the drugs, yeah.
to give you, is it oral?
No just tablets.
Tablets? But they’re there kind of watching you as you take them?
Yeah that’s right, watching me. That’s called, not observing, yeah it’s something, I don’t know, I forgot yeah.
How do you feel about that?
Oh I didn’t like that at all because it – it was kind of helpful in a way because they did a bit of, if you had something on, if you had some troubles, you could talk about it for a bit, kind of like a counselling thing, yeah.
So that was helpful, that part of it?
Yeah, it’s just, I didn’t see the necessity of taking the medication. It wasn’t really helping me, but yeah it was kind of something you have to do.
And why, obviously wanting to get well and being able to kind of do it yourself, are there other reasons why you didn’t want to take the medication?
I didn’t want to take it because I don’t know, sometimes I didn’t remember, or I forgot, or sometimes it’s just not doing me any, anything, much help I guess physically. Like I didn’t notice any changes whether I was on it or off it, so…
Having some input and control seemed to be important for people even in the context of involuntary treatment when they were under a CTO. They found it beneficial when they felt they were somehow ‘choosing’ to take the medication.
Despite having a CTO,
Charlie felt she had some aspects of control over how and when she took her medication.
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When you say they gave you little choices, could you give me some examples that you built on? Could you give me some examples of what they were?
To allow them to take my medication on my own rather than be, you know, tablet fed, yeah. You know, instead of a mental health worker, or whatever, handing you those pills it’s given to me and I just take them, yeah.
So little things like that where you’re starting to make that choice?
I built on that choice, it wasn’t mine. I didn’t really care at the time, but I built on those choices and people were encouraging me too. So now that I’ve got my own, I had my own system of how I’d take my medication. When I take it, how, well, the proper amount obviously, but, that you know, at the time that I liked to take it at night rather than someone saying, “Yep, six o’clock in the afternoon, here’s your tablets, go to bed”.
What I do now is, I go to bed for a couple of hours and then I get up and take it because I need those two hours. I need for my mind to process the day and, you know, what I’m doing for the next day and I need those two hours tablet-free for myself and I’m happy enough. I set my alarm for two or three hours afterwards, I get up and I come and sit here and get some water from the fridge and that, and just take it.
When they felt a little better, some people wanted the opportunity to alter the dose of their medicines by changing the prescription, or having the final say each day about whether and how much medicine to take. Having some choice about treatment seemed very important. Some people found that medical staff listened to them, but others found that it was a struggle to be heard. Gurvinder saw his choice as between taking the medicine he was prescribed (though depot injection) or being unwell – he didn’t think the doctor would listen to him if he asked to change medication.
Luana agreed that she should have been on a CTO initially to keep her safe, but said she quickly became well and thinks she was on it for ‘far too long’.
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I was on the CTO just recently for a year. I wasn’t on it the first time I became sick after the work-related stress in 2009. But this second time they put me on a CTO, yeah.
And why do you think that is?
Because when I was sick I ran away from the hospital.
And do you remember that experience?
I do and I definitely agree that I should have been on a CTO, I can understand that.
Sorry, you should have been what?
I agree that I, you know, and I’m not saying the CTOs aren’t worthwhile, I can see that I should have been on a CTO because I had ran away from the hospital and you know it was safer to have me on that treatment order. But what I feel is wrong is the fact, the length they kept me on it. Because when I was well and I was just going in there and very compliant. And even when I had a period of being unwell I was still going in and taking medication and following the doctor’s orders. I think they kept me on it for far too long, much longer than I needed to be.
That’s interesting – that in retrospect you think, ‘I’m glad I was put on an order that meant that I had to, because I was not well enough to make that decision for myself’. Would that be correct?
I wasn’t glad, I just, I could understand why they put me on the order because I had run away. But when I became well, which was a period of a couple of weeks of being unwell to well. When I took the medication I had no intention of running away then but they still kept me on the order because I had ran away when I was sick. So it’s very difficult because you know I was acting like that because I was so sick and then I was well.
And then the psychiatrists, they seem, I’m not sure if they were extremely worried about why you’d have an episode again or, I’m not sure why but I think they feel better if you’re on a CTO. I think it’s for their peace of mind.
