Most people we spoke to had spent time in hospital in relation to their mental health and you can read more about being admitted and leaving hospital here: Hospitalisation: Being admitted and leaving. People spoke about staying in acute units, mood disorder clinics or adolescent wards of general hospitals, forensic hospitals, private psychiatric hospital wards, and a few experienced the old stand-alone mental institutions, many of which have been closed in Australia.
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Day to day life
Medical treatment and alternative therapies
Relations with staff
Chris described the old public psychiatric institution as ‘like being in prison’ even though he was there as a voluntary patient. He found being submissive was what got him out.
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But then they put me into [hospital], an old public psychiatric institution. And I was in an enclosed ward, called [ward name]. They put me in there because I was not well. It was a bit rough.
What was that like?
Oh it was like being in prison really. And I couldn’t get out.
So you were voluntarily treated there?
Yeah. And it was very difficult. Actually in a seclusion at most adult mental health hospitals, it’s like being in seclusion 24 seven, really. It’s like being in a place where – there was not much movement. Everyone was just watching everyone, and it was really scary. I don’t even know how I existed or survived to get out of there, but I did. I did finally get out of there, and then I went to an open ward at [hospital]. I spent about 10 days in [ward name], and I behaved myself after that. I didn’t argue, didn’t fight, didn’t resist. I was told what to do and I did what was told.
Gosh. So do you think part of the reason why you ended up there was because you were resistant to…
Medication?
Yeah. And it was a terrible experience. And then it was like to get out of here, I just have to do the right thing, which is, do whatever they say.
Yeah, do not complain. Under any circumstances, do not complain. Be totally compliant, not resistant, and follow what was expected. And then when you convinced them that you’re willing to be submissive, not complain, then they’ll let you out. Then they’ll put you in an open ward, then there’ll be more freedom.
Day to day life
People could have very short stays in hospital (e.g. overnight), or could stay there for months, and a couple of people stayed for several years. Some people who stayed in hospital for a long time experienced being moved around between different wards.
Brian described the difference between the acute and non-acute wards at the forensic hospital he spent several years in.
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So then drove me up to [prison assessment centre], you know, assessment prison and a couple of days later they moved me out to [mental health hospital]. And that’s where I stayed for nine years I think it was.
Right. So that’s a long time. How was that experience? Were you from – I guess if you can remember from the beginning and first going in, was that…
The higher you get at [mental health hospital], the less violent it is. I don’t know if you understand that but. I mean it’s quite violent on the [ward name] and [ward name].
Are they the lower wards?
No they are the acute psychiatric [unclear] – yeah. And like to get a whack in the gob there’s not a unreason – not uncommon. And you move on to the mediocre units, oh not so mediocre, the halfway, not too bad, not too sick. Yeah there’s a – I’ve forgotten what I was going to say.
So nine years in the system you’d know the traps pretty well.
Oh yeah, yeah.
In terms of the whole system and how it’s set out.
Oh yeah for sure, yeah, yeah.
So you said the higher that you go, the less violent is it?
Yeah, yeah, yeah. But once you get almost out on rehabilitation for someone to hit someone else is very rare. But in acute it’s quite common. They go and put you in isolation for a day or two and that’s about it yeah.
And do you think in terms of those kinds of methods for managing violence, do you think that that has a negative or do you think it has an impact on people’s mental states as well? Do you think…
Oh, oh, I found personally you couldn’t relax properly at [ward name] and [ward name] because there’s always someone talking and very unwell and you’re – I’m very unwell and had my issues and they’re very unwell and have their issues. And, all things considered the staff do an amazing job there I reckon. I really do mean that, yeah. Sometimes they get it pretty easy, like take you to the Big Mac on Sunday for lunch, but [laughs] generally the work they do on the ward’s really good.
Although it could be difficult for some to remember everything about their stay in hospital, most people had some strongly negative memories of being in hospital. The visual and spatial layout of the ward or constant surveillance could exacerbate people’s sense of feeling unwell. Tanai said ‘I was on 24 hour watch… and that drove me insane’. Carlo described feeling as though he was in a ‘fish bowl with glass everywhere’.
Being in hospital for the first time could be frightening. Helen and Nicky felt uncomfortable staying in a shared ward: other patients were ‘a bit scary’ and there was ‘a lot of stealing going on’. Brendan and Brian both spent time in an acute ward. Brendan didn’t think acute wards were places where ‘you get well’ because in his experience there was ‘too much going on’ and it was frightening when people were ‘crying’ and ‘yelling’. A few people said they struggled to sleep in hospital, like Gurvinder who said ‘[you] can’t get to sleep there ever’. Susana was in hospital for one night. She couldn’t sleep and didn’t think it was ‘the right thing’ for her.
Maria didn’t like being in hospital. She was shy and there were ‘strange’ people there.
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But for me, my first admission into hospital was trauma enough, because patients were on different levels of recovery and some really sick compared to how I was. At 19, I was very introvert and shy and these strange people coming up to me and elderly man saying, “Oh you’re so good looking”, you know, things you don’t want to hear. When my parents would come and visit, I would just say, “I want to come home, you know I don’t want to be here”. But they were trying to obviously stabilise the medication.
The lack of freedom was an important aspect of their experience for some. Anna didn’t like being ‘being cooped up’. Sarah said she felt ‘trapped… just like a prisoner’. Simon described being ‘shackled’ and restrained. The hospital staff didn’t take into account his past experience of sexual assault and he said being restrained was ‘re-traumatising’. He felt he had fewer rights as a patient in a hospital setting than ‘a prisoner’ would have in gaol. Several people tried to leave hospital without telling staff. Allen was taken to hospital by the police and was there for three months ‘heavily against my will’ and described running away from hospital several times. Maria tried to get out: ‘I would constantly go up every five second, go up to the door and open it, which was of course… locked’.
For others, the days in hospital were boring. Helen said she wanted more things to do instead of ‘just sitting there and moping and thinking, oh, life is bad’. Most of the time people were left alone with the other patients. Lisa and Tanai were in hospital when they were adolescents and Lisa questioned whether it was good for them to be ‘constantly surrounded by’ other teenagers who were unwell. Tanai described a time when another young patient asked her roommate, who had been diagnosed with bulimia nervosa, if she could ‘show her how’.
However, for a few people, there were positive aspects to being in hospital. They mentioned caring relationships that developed between patients in the hospital and some made a point of helping others. Paddy tried to help people he saw in hospital and described it as a ‘community of people who are all unwell together’.
When
Niall was in hospital when he was 21 he made friends and has always preferred being with people ‘with similar experiences’.
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I’d been in hospital twice. I went in as a voluntary patient the first time, when I was 20 in 1990, but that didn’t achieve a great deal. And I was in there for two weeks, but had major obsessions and yeah.
But, the two times I’d been in hospital, I’ve managed to get out and have a hit of tennis so I haven’t been too bad really. And then I’ve been with interesting people in hospital too. Like, I remember there being an anorexic girl there who was like a skeleton. And I’ll never forget that as, as long as I live I don’t think. And there was, you know, different people. There was a girl with post-natal depression and a man who was angry with everything and he was very cynical and – you remember these things, about different personalities in the hospital.
And then when I was 21, I had to go in. I think it was actually deemed depression. And then I went into [name of hospital] in [name of suburb] and that helped me a fair bit. I got a bit better in there and went for walks, played tennis, met this girl who was recovering from a mental breakdown. I played tennis with her and…
So I met people. I prefer people. I’ve had that all throughout my life, I’ve been able to make friends with people and people with similar experiences and that sort of thing. I’ve always had that knack and I think I must’ve got that from my, my mother was like that and I think I must’ve got that from her, I think.
Simon now says he has a more positive experience of hospital and goes out of his way to help others. He feels he is now respected by the nurses and he shows them respect too.
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Yeah, and could you talk about what about it was more positive, particularly around the kind of treatment you received and your involvement in that?
And I noticed this because I was particular watching that sort of thing. I expected a certain degree of respect from the staff, it also helps that I was on the Consumer Advisory Committee, so I was at least their equal in the system. And I treated them with respect, as long as they treated me with respect. But at the same time, when there were patients who were clearly quite unwell. I would try and help with their needs to keep them off the nurses’ back, and stop them being taken out to the [psychiatric intensive care] unit out the back.
Like there was a guy who was very addicted to cigarettes, and to lemonade. Well, he he was only allowed out the front, he wasn’t allowed to go down to the supermarket down the road. So I went to the supermarket down the road and I got him a couple of bottles of lemonade. Because he gave me the money to get him some lemonade, well he was expecting me to get one bottle.
Well I ended up getting four bottles at Coles for the same price. And with the cigarettes. The pharmacy would only supply him the gum, Nicorette gum, well if you’ve got artificial plate teeth, you can’t have the gum. So I was giving him some of my ordinary little lozenges, and every time I did, he’d calm down. And he’d stop stressing out and he’d stop stressing the staff out.
Some people commented on improvements in the mental health system. The separation of male and female wards was one example of this. Nicky had experienced mixed wards in Australia and the UK, which she found unsuitable because she said her illness increased her sexual drive. She said there was much more awareness now of the need to separate men and women. However, when Simon, who is transgender, asked to be moved from a women’s ward to a men’s ward when he was well into his gender transition, he was refused.
Medical treatment and alternative therapies
Most people were given medication during their stay in hospital and quite a few were also offered other therapies including talking therapies (see Talking therapies). Some mentioned that they refused to take medication. Others felt they were under a lot of pressure to take medication, and a few were glad, later on, that they had taken it because it made them better (See also Medication: Choice and Non-compliance). However, a few people described confusion over what medicine they were taking, and poor communication with staff could lead to added stress.
Michelle remembers being treated roughly and forcibly injected medication after she had a disagreement with the pharmacist who gave her a new pain medicine that she hadn’t been told about.
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What were you being prescribed at the time?
At the time it was, I believe it was SEROQUEL (quetiapine). Yeah. So for some reason she was trying to give me ZYPREXA (olanzapine) and you know I kicked up a bit of a fuss and said that wasn’t what I was on – “That’s not the medication I’m on. Just give me my pain medication”, and you know she refused and she was holding the little medication container and I just sort of whacked it out of her hand. And yeah, basically I went back to my room and within a few minutes a big – you know a big team of people, all of the nurses on the floor, came in and held me down and you know, pulled down my pants and gave me an injection in my bum. So that was… [Laughs]
Yeah that wasn’t a very good experience and I don’t think that the nurse handling the medication, I don’t think she handled it in the best way. I think she could have perhaps been more understanding at my, you know, the distress that was I was going through and not wanting to take medication that I hadn’t been prescribed. Yeah, apparently somebody had changed it overnight or something like that and I was not made aware of it, the change in the prescription and so I refused to take it.
Bernadette felt very paranoid when she was in hospital and was afraid to drink the water and kept checking the pills. She describes being pinned down and injected.
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But then when, you know, once you’re inside the hospital and I was just still very paranoid and didn’t know who to trust or what was going on. So I was really concerned about water when I got put into this seclusion room. Before that I was okay on the ward. I was in a locked ward but I was walking around and I was able to, you know, get my own water out of a tap and that sort of thing.
But once I was in seclusion I was just unbelievably paranoid. So I wouldn’t swallow the pills. Well I couldn’t because I wouldn’t. I was just – I didn’t know what water would be alright. And I was checking the pills to make sure they had stamps on them and they weren’t something other than pills. Anyway, so yeah I was in seclusion and I was in there for days. And in between that I, there were parts where I was brought out and strapped to a bed. But I was really – they had to use security a few times to hold me down to give me a needle and I just had bruises all over me. Like it was really full-on [laughs] and also being strapped down on the bed. So all of that was really overwhelming.
Simon and Maria were given electroconvulsive therapy (ECT). Simon said he was forced to have ECT and says it took ‘away huge chunks of memory’ which have never returned. Since having ECT, Simon said he has developed problems with concentration, for which he sees a neuro-psychologist. He is worried about being forced into having ECT in future. In contrast, Maria said ECT ‘worked’ for her.
Relations with staff
People had positive and negative experiences with staff (see also Experience with mental health practitioners, psychiatrists, counsellors and others). Bernadette had very negative experiences when she was preparing to leave hospital. In her opinion, the reports for the Mental Health Review Board were full of ‘errors of facts’. When she reported the errors to a registrar they were changed.
Ann felt the nurses didn’t pay much attention to the patients, or to what the psychiatrists said. She had a ‘bit of a power struggle’ with them.
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Could you talk a bit more about that idea of the ‘us and them’ divide?
Yeah. I think, I guess what I mean by that is they spend a lot of time in a little goldfish bowl in the middle of the ward and not much time talking to the patients who are in the hospital and trying to get to know them better. And they see that as the role of the therapy staff that run the group sessions. Yeah, there’s one hospital stay I remember that I think it was probably my first hospital stay – I was really unwell. I didn’t get out of the bed for about five or six days and I think I saw a nurse twice. And I think that it can be a bit of a power struggle with the nursing staff sometimes.
I think that they are, you know, they’ll control the medications and things like that so obviously you have to see them to get your medications. But if you’re requesting extra support they only tell you that they’re too busy, when really what it looks like is they’re just standing around talking to each other about ‘The Voice’ or whatever other crap [laughs] was on TV the night before. So I think that it’s a bit of a power imbalance and I’m not sure how much they actually listen to what patients are saying or what family members are saying. But I don’t even think they necessarily listen to what the psychiatrists are saying, what messages the psychiatrists are passing along other than medication changes.
Insensitivity of staff towards a person’s individual experiences, or not respecting their ‘rights’, was mentioned by some, like Sarah who had ‘a sense of not being heard’, and of having ‘no control over any of the decisions that were being made’. This could relate to important decisions about treatment but also moment to moment experiences of life on the psychiatric ward. Bernadette said that when she was in the intensive care unit she was only allowed to smoke by arrangement up to twice a day and it ‘drove [her] absolutely mental’. She became upset and agitated and ended up being put in seclusion as a result. She later found out the nurses had put on her notes that she was ‘very intrusive and demanding’.
Simon, who is transgender, was a year into his gender transition when he went to hospital. Hospital staff refused to treat him as a male, withdrew his testosterone medication and told him it was all in his head.
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Would you be able to describe that experience of hospitalisation?
Absolute nightmare, because they flatly refused to treat me as a male. They flatly refused to discuss why they wouldn’t treat me as a male. I’d started to transition, and they pulled me back out of transition, told my doctor not to prescribe testosterone for me, that it was all in my head.
How? Sorry just so we have some context…
But then they didn’t discuss it with me.
So how – just in terms of a timeline, you had support and a supportive doctor who was helping you transition?
Yeah.
That you’ve been seeing a GP and a specialist?
I’d been on testosterone for approximately a year.
So substantial inroads into…
Yeah. The doctor decided it was a figment of my imagination, but he didn’t discuss it with me.
In hospital?
Yeah, he saw me for about 10 minutes every three or four days in hospital, maybe less often. But he would not listen to my saying anything about gender, he would not listen to my flatmate who was also transgender. And she was trying to tell him, look you can’t go calling him her, they refused to use my name. Because it wasn’t on my birth certificate. When I told them I was worried about getting periods back again, because that always makes me really depressed, they put me on female hormones.
Given how unwell
Carlo was there were many things that frightened him. He ended up writing a 12 page letter to the hospital after his stay about how to ‘treat someone in [his] situation’.
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I ended up writing a letter to my hospital after it all to – I was very grateful for them helping me, but to highlight how they could change their policies and practices for someone else who entered in my state of psychosis.
What did that say?
It was about 12 pages long.
Oh, what [unclear].
[Laughs] It was how to treat someone in my situation and how to maybe treat them a little bit differently to someone who was say just depressed.
Can you give me some examples?
From the admission process for example, why do I have to sign all these forms? And I told them, I was petrified. I didn’t even know why I was there and what was happening and yet I had to sign all these forms to say I was going to be there for 60 days. I mean that’s almost – it put that fear into me that, ‘Shit I’m going to be here for ages’.
Yeah, just even the door knobs, and the door stoppers, not having them in black because they look like cameras. Not having big wall-to-wall mirrors. Not having showers that worked properly because everything that wasn’t right amplified. You know explaining what was going on and what was there, because the environment was quite bizarre and there were a number of people walking around with drip machines and all kinds of stuff. I didn’t even know. I thought they were all actors. I didn’t even know who they were, why – it was just totally bizarre and then they’d send graduate nurses in there to – I think they were just on rotation to speak to me and I mean – yeah, what else? I wrote the letter a while ago so I can’t recall much more.
Don’t worry about the letter. I guess it’s for, in terms of your…
But there was just heaps of insight to how you could make someone feel a lot better. There was – my bed was next to this particular level and staff had to enter this key code all the time. So most of the day and night, I would just hear this continual key code, da, da, da, da. There was vacuuming, I had vacuuming going on outside my door every day. And part of it, I don’t know if that’s part of the program, whether that’s meant to be there to get you into this routine or not.
Then they had this, there was this crappy exercise bike and stepper machine that didn’t – it barely worked and it was – knowing, like exercise is so important, so why wouldn’t there be this functioning, fully proper equipment there to use?
Even outside in the courtyard, yeah, not have these massive like fishbowl, like video monitor in the tearoom which it can be a small, like a little bit less intrusive or just things like that to make me feel more comfortable.
Was there any other therapies when you were in there apart from…
There was, but nobody explained to me what they were. There was this whiteboard that everyone just seemed to – there was handwritten names on there and stuff. And I remember wandering around one day and kind of like having a look in and seeing what was going on and, but no one explained really what it was for and there was – in hindsight I couldn’t – there was no way, I was still petrified and yeah. And eventually I think I made the comment, “I think I’m ready to – I would like to go now”.
A few others had positive experiences. Lisa felt ‘quite supported’ when she was in a private hospital when she was 19. Niall described the psychiatrist in hospital as ‘gentle’. Brendan felt ‘safe’ when he was in a mood clinic because there were people there he could talk to if he had thoughts of harming himself. When Cindy was struggling to sleep in an acute ward because her roommate kept turning the bathroom light on, she was given a private room.
After
Brian was transferred from prison to a psychiatric hospital where he was diagnosed with schizophrenia, he had ‘nothing but praise’ for the staff.
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Well, like I mean, you know – I could – I’m in gaol for it in a really unfortunate situation, you know, which I shouldn’t have been ashamed of and, “normal” is like prison system, but “abnormals”, the psych system. But now been around the traps long enough to know the psych system’s better [laughs].
Why is it better?
Well the support you get it’s great you know. Everyone, nurses, doctors, they’ve all been great in there. Probably about one or two that I haven’t got on with but generally the staff have been fantastic. Very supportive and you know, let me have my say and that sort of stuff. And yeah when I was in [mental health hospital], they used to trust me enough to go out to [name] Market with a nurse, you know, on day leave and all that sort of stuff. So I got looked after really well, just like to put that in, yeah.
Some recognised that the staff had a challenging job and praised their ability to deal with what was happening. Maria advised others experiencing mental health problems to be ‘patient for your recovery, patient with the nurses, patient with your psychiatrist’.
Despite the fact that
Tanai said she could be violent and ‘nasty’ when she was unwell, the staff were ‘kind’ to her. She described time in the ‘fish bowl’, which they used to calm her down.
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How do you feel you were treated by the staff?
The staff were actually really good. Like they were kind to me, they knew what I had and they didn’t let me manipulate and pull the punches which is something I’m really, really bad for when I’m unwell.
Could you give me an example of how they didn’t let you?
I wasn’t allowed to like try to emotionally manipulate them. Like they just wouldn’t get into it. They wouldn’t play the game. They wouldn’t get into insult games. They wouldn’t let me affect them. Like I could be as nasty as I sat there and pleased and they’d still sit there with the exact same look on their face and just keep repeating, “You’re going into”, like – I just call it the fish bowl. Like the special room where the doors only lock one way and you get plastic knives and forks and shit. It’s fun. And a foam puzzle. It’s a safe room for like when you’re flipping out. And I was threatening violence on them. Like I had gotten up and was going to punch my nurse.
So like it’s fair enough and it was just like, “You’re going to spend five minutes in the fish bowl. Still flipping out and you’re going to spend 10 minutes in there. You’re going to spend 20”. They never at any point snapped back and gave me anything I could latch onto and turn into a big distracting argument which was awesome. And that was immensely frustrating because all I wanted was to get them distracted into an argument and then I can make a big thing and they could forget what the original problem was which was that I wasn’t participating in group or I wasn’t eating my lunch.