Carers’ experiences of hospitals and mental health units

Do you have any specific suggestions as to how the public system could be improved?

I think they need to allow for visiting psychiatrists [to have] more access I suppose. I’m not sure how that system works to be honest. I mean I think there’s residents there and they’re learning the trade. From what I can see the nursing staff are tired. They’re uncaring. They’re more like debt collectors. You know what I mean, as in – they’ve seen it. They’re impassionate [sic].

They’re, how can I say – actually [wife] tried to be a personal care attendant at an elderly facility and she said the nurses in that facility are like psych nurses. They just don’t care. They’re just there for the money. And in saying that, you’d probably need to have a passion to do that sort of job, because it is a negative environment. You need to have a passion. You need to have good skills and – smile. You do walk in there and they’re morbid.

And you’re meeting people with serious – compared to what [wife] has, I’ve seen worse in that private facility – that you’re thinking, luckily these people have parents or people that are prepared to support them in that facility. Now theoretically I haven’t got the funds to support [wife] in that. But I know that I need to do it because it’s better than being in the public sector. And that causes me a lot of financial stress but I have to do it. So I suppose – it’s alright to be in a job that you don’t like, but don’t show it.

I can’t begin to praise the unit that we – I don’t know but it was just the most horrific experience, but yet the most supportive experience of my whole entire life. I was scared initially because I didn’t know what was happening to my child. And the first few days in isolation* were the worst because I couldn’t see him or talk to him, because he was under supervision of two staff for 24 hours. And he was in a room with just one mattress, that was horrific.

But then after he was taken out, stage by stage he was placed in a room where he had his own facility. It was shared facilities with other patients. He was taken care of by an amazing team of specialised doctors starting from counselling, occupational therapy, psychiatry, psychiatrists on board. I was informed daily, I could visit daily, I could spend time. I could take – after he became well, after a couple of months he was there, he was allowed to come home on the weekends.

They also had a unit there where they could educate and start to rehabilitate back into the education system. Case management was there, it was an amazing place for [son], the adolescent unit was an amazing – the place to start his treatment. I was also counselled and helped, my family were helped. I could not start to even thank these people for all their help and support.

And in conjunction with my feedback and my experiences previously before [son] got ill, they came to – and the nurses were excellent. The activities that they had in the unit, they were allowed to bring their own, you know, technology, TV and PlayStation and that, so they can have their own – like to feel at home. It was excellent. It was nine months.

Oh it wasn’t – in the beginning it was a little bit daunting. But once I found out about the place and I was informed of what was going to happen, because I was daily informed, and I became more comfortable. And even though I wanted [son] home, I knew that he was in safe hands and he was well looked after.

Note: It is likely that the person being cared for was placed in seclusion not isolation.

Were you happy with the treatment that she received there?

Oh, yeah, unbelievably happy. I recommend that facility to anybody that was suffering from that depressive illness that has private healthcare, but…

What were the features of good care there that you saw that make you recommend it?

I would say that the nurses that were in charge of, I guess, their primary care all seemed fantastic. They were empathetic, they were – there was a few trained psychologists, psychologists as well as the nurses on the unit, and they were all there for that specific purpose. There didn’t seem to be any instances of bad care or unhelpful care. So, that was, that was one respect where it was – couldn’t question the treatment that she received.

Okay, so I went – when the first couple of times she went in there I used to take the kids in and stuff like that and you’d see people that are in worse states. Like [wife] was in a ward where the nurses’ station was in the middle and all the rooms were open and you weren’t allowed to have shoe laces and I think they call it the high security – it was like prison. You know. It was like a prison, but a nursing station. So the nurses could see who’s – into every room. There [were] no doors, no windows and I’m thinking, ‘Oh what are the kids going to think about this?’

And you meet people that are sort of, I don’t know what the term is that – they look a bit unstable. And you know they’re heavily medicated and all that but it’s something that you don’t want the kids to see. So that was to me a bad experience. I don’t believe, the kids, whilst the kids want to see her I think I’ve – I want to shield them from that sort of thing. [Wife] understands.

So it wasn’t bad experiences that your wife had in relation to the care for her and the treatment.

No, it’s more about who’s around her and all that.

Has it been at the same hospital?

He’s been at three different, actually, four hospitals. One private one and then three public hospitals.

Have you noticed a difference between them?

There is a difference, there’s definitely a difference between the hospitals. And there’s a difference in the physical set-up of the hospitals. One of the hospitals would be much more preferred in terms of it’s a much more pleasant physical environment.

Is that public or private?

Out of the three public hospitals, two of them are better than the third and it’s to do with the physical environment of those two. They’re not as run down and old. Just one of them used to have – met the people [sic], the clientele or the consumers. They’d have meetings and they could raise concerns at those meetings. I don’t know whether they all do that. I mean I thought that was terrific that they – you know, it would be just ordinary everyday things like you know, “Do you like the tea and coffee that we’ve got?” Or they could raise any issue that they were concerned about.

So that and the staff, look, I think the staff are all pretty comparable. Well you get some very experienced and competent people and you get some ordinary staff, you know, who don’t know what’s going on and couldn’t care. And the thing about all those three public hospitals, all suffer from the same problem. They have a set-up where you have a sort of enquiry desk, so you walk into the hospital, we get buzzed in. You press the buzzer and you get in and they have a desk where you stand. And then behind that desk is a room where the staff are doing their paperwork. And you try and get eye contact with some of those staff sometimes: it is impossible.

And I think that that needs to be improved. I think there needs to be a better relationship between the people who are coming in to visit – it might be just a small enquiry that those people have got or they might want to arrange to meet with a doctor or a nurse or something, you know? But they are very good at avoiding eye contact and that. So yeah, I think, look there’s lots of improvements could be made really.

Once you manage to get them to meet your gaze, does their attitude improve?

Look again, it’s very individual. Some people are terrific. They will talk to you about your concern or organise the meeting that you want organised, or whatever it is that you might want. Or it might be just a query you’ve got. It might be, you know, what’s been happening recently or whatever. Some are terrific and some know, they’ll know my son for instance. Others just couldn’t care less. It’s just a job and they’re pretty blasé about it.

But you have to accept that there will be the whole gamut of people in a staff like that. That is – there’s big staffs. It’s a huge change over. They’re working 24 hour shifts and so on, but it would be nice to somehow – for them to be able to get the staff that are good. It’d be nice for everybody.

So she ended up then going to the local, the closest one, public hospital, back into the Intensive Care Unit (ICU) because of the seriousness of the amount of medication and then I thought, ‘Here we go again, we’re on a treadmill. We’re going to go back to a psych unit’, – and sure enough, we were going to a psych unit. Only, this time, there was no room at our local one, so we had to go to another one which was actually the other side of the city, temporarily.

And that particular psych unit was the most inhumane, poorly – I wouldn’t want my worst enemy to be sent there. It was absolutely shocking and yet it was a big hospital. Well, you’re in the city so they were all pretty big hospitals and it was the worst hospital and you’re remembering here that we’re talking about a psychiatric ward or unit where people need to be treated with a lot more care and stuff like that. They didn’t display that at all.

I was able to get her, to take her out along the road to a market, an outdoor market, on a Sunday, just to get her out and about and I said, you know, “It’s just along the road, so about an hour, hour and a half”. They said they need to know the exact time and I said, “Well, look, give us an hour and a half. We’ll be back by then, she will have had enough”.

We came back after about an hour and forty minutes and I actually got spoken down to and chastised for being 10 minutes late and told that, “If it happens again, she’ll have her external privileges revoked”, and I said, “You’re kidding me. I took my wife out on a Sunday afternoon and I’m 10 minutes late. What are you, the Gestapo?” It was terrible.

I couldn’t wait until they transferred her, because they were transferring her to our local psych ward when it was available. And she ended up staying there for two and a half weeks. Well, they were the worst two and half weeks of her life and they were possibly the worst two and half weeks of mine too, because it was terrible.

Did she say to you, can you remember, in her own words, about what it was like for her?

Yeah. She absolutely hated it and I even mentioned it to the GP. I gave him a ring and said, “What can I do about this? Because this is not helping a mental health patient to be in a facility that is run like a prison camp”, and he said, “Yeah, well, nothing much [I can do]”. He said, “Leave it with me”, and I think he made a few phone calls out to [suburb] to see if we could do anything and all the rest. But you have to be very careful. You can’t lay too many aspersions on the place or anything like that.

Did he know the reputation of the place that your wife was in?

He was surprised, but he knows me. I’ve been a patient with him for, you know, a long time and [have] a close relationship with him and so he knows that I’m not given to exaggeration or anything like that. The patients or the people that were there were moping around. If you’ve ever seen a program like ‘The Walking Dead’, that’s what they looked like, some of them. They were just like, over-medicated or whatever.

It gave me that impression of back in the day when the trick with mental health patients was just, ‘Medicate them until they’re docile and then we’ve done the job’. That was what I felt. It wouldn’t have been the case, but that’s what it looked like. I could not wait to get my wife out of there and of course, she was in there as an involuntary patient at the time because of [having] the accidental overdose and that was a shocker.

So, eventually, we got her back to the unit where [laughs] she called ‘home’, and it was like, ‘Thank God, I’m home’, because it was so much more conducive, you know, having her own room and all the rest of it. She felt that she was more human there.

My son approached his new case manager and told him that he stopped the hard drugs which is the ice (crystalline methamphetamine)* and he needs support. He told him, “I’ll get back to you. I need to talk to the psychiatrist”. My son came to the car and he said, “I told my case manager that I stopped the hard drugs and I need support and he’s going to get back to me to give me something to support [me]”. We have a holiday house and he said to me, “We go to the holiday house and spend the long weekend so I don’t see anyone”. I said, “Yep no problem”. That day I kept on trying to call the case manager.

Unfortunately there was no-one at the reception and no one returned my call. We spent three days in the holiday house away from here, from where we live. And watching my son going through horrendous experience with the withdrawal and just me [to support him], was hopeless. The only thing I had is Valium, which was 12 months out of date. I used to give him two tablets four times a day and it didn’t help but at least I was saying, “We’re trying. We’re going to do it mate. I love you. We did it before, we can do it now”. We did it.

When he came back I called the triage just to tell them what happened and they said it wasn’t right. The case manager on the spot, he should’ve called the psychiatrist and gave him something so he doesn’t go through this horrendous withdrawal. No one called me on Monday. They said they would leave a message so the case manager would contact me on Monday first thing in the morning. No one contacted me.

When I called them back no one was there and the receptionist asked me if I would like to talk to the psychiatrist because he’s around. I said, “Yes put him on the phone”. And then she got back to me and she said, “He’s busy”. I said, “Okay”. I left a message that the people who [are on] the adult treating team [in] this place, they need to be sweeped out and [the] head of them is [the] treating psychiatrist. I said, “Please make sure to pass on the message from me. Thank you. I’m so sorry. I don’t mean to be angry at you. You’ve nothing to do with it. But I am angry at the treating team. Thank you very much”.

When the case manager came, [he] got my message as well and he contacted me and he said, end of the conversation was, “We are here to support his mental health”. I said, “What about the addiction? You haven’t been successful since 2007. Until recently you’ve been treating my son, treating the mental health, and the addiction has the biggest impact on the mental health, and the medication’s not working. It’s just keeping him hanging from relapsing. Until he get discharged from the CTO, he’ll stop the medication, then he’ll relapse”.

And they said, “If he needs support for his mental health we are here to support him. With his addiction he has to call other Alcohol and Other Drug (AOD) services. Thank you very much”, and [that] was it. I sent a complaint and starting from [health minister] at the [government department]; Chief Psychiatry, [mental health non governmental organisation] and the rest of the crew at the treating hospital, the heads and the lower. And it took the Chief Psychiatry one month to get back to me and to ask me if they can act on my behalf.

I said yes. Already arranged, already had an appointment but unfortunately they did a new treatment plan and the new treatment plan said, “The depot every fortnight ongoing. Support to my son with his addiction see AOD service provider ongoing. Psychologist to my son ongoing. Support to myself – to the mother and the family ongoing”. The only support there, the only thing going there is an injection every fortnight. The rest – there is no plan to start with, to begin with, [that is] going to be ongoing. So there is nothing at all. And I have to deal with everything. How am I going to juggle everything? I don’t know.

So yeah, it does make me wonder are these people professional? Because when I sit down in front of psychiatrist and I said – and every time I mention, “[Son] need a dual diagnosis counsellor, you’re not successful so far dealing with one without the other”. End of the conversation always, “You’re right. But we’re here to deal with the mental health”. Full stop.

Note: For information about ice (crystalline methamphetamine), see Australian drug information page.

I’ve been in a meeting pleading for help with my son who’s mentally ill and has a drug problem and they’ve told me, “We can’t help you, we can’t help your son whilst he’s using drugs because if we give him antidepressants or medication he’ll just overdose and you just have to face the fact that your son’s a drug addict”. And you know, I’m sitting in a room with, say, five doctors and they’re all looking at me telling me this and I think, “Thanks for the support, guys”. What do you do? You just get up, don’t say a word and you walk out.

But they – there’s all this talk about recognition of dual diagnosis but they don’t – they only pay lip service to it. Do you get what I mean? They don’t actually, nobody actually – I don’t know what the policy is in public hospital these days but it used to be that, you know, you had a drug problem, they couldn’t treat your mental health problem until you got your drug problem under control.

But nowadays, you know, with dual diagnosis they say you can’t attack one problem without the other. But the community mental health service pay lip service to that. I don’t think that they treat – well, they don’t. There is absolutely no treatment whatsoever for the drug addiction.

How do you understand those five doctors that you mentioned, or how do you account for that kind of – how did you feel when they…

I felt totally abandoned. I felt like, “Why am I fighting this battle? You know, nobody’s going to give me any support, nobody really cares, [son] doesn’t really want me to be involved in his life, why bother?” I just felt like nobody actually cares. I don’t know why these five doctors were in this room. I got called into a meeting and there were five doctors in this room.

One of them was the chief of psychiatry at [outer city hospital] and they said, “You know, what do you want us to do?” And I said, “Well, you know, I want my son to be treated. He’s got a mental illness of some sort. I want him to be treated and I want some support”. And they said, “We can’t give your son drugs, medication, he’ll just overdose on it, and you need to face the fact that your son is just a drug addict, just a drug addict”. I’ve been abandoned so many times in [son]’s life to deal with his problems on my own.

So the second time was way worse in the hospital. It was really frustrating because I think at least my mother and I were vaguely involved with her being there because we couldn’t care for her ourselves and we didn’t have access to any other support. But then once she was placed in the system there was nothing that we could do. We had no involvement at all. And she ended up staying in hospital for about a month or more.

In what way was it harsher the second time?

Well I think the first time I had help with sort of, I had someone to help me communicate with the doctors who knew the system and how to talk to them. The second time I didn’t and I think I found it really frustrating and I think I use the word, ‘harsh’, because she was put at one stage into solitary confinement* or like a restricted space. And I went to visit her and I didn’t know that this had happened and then I couldn’t see her so…

Because she was in solitary confinement.

Yeah, but it was really distressing because she was not happy about being there and I could see her, you could, she was behind the desk and it had this glass wall and then it’s just a confined space there which must have had like a few bedrooms because there was more than one patient in there. And she was really distressed and crying and really upset and trying to communicate with me through this glass window. Because she was scared, I found out, because of the other people that she was confined with who had threatened her with violence and all this kind of stuff.

Were they women?

No men and women.

So it was mixed.

Yeah

And so for a young woman who’s been taken advantage of by men in the past…

Yeah, and they had known that and then they still put her in this space. I don’t know why. I can’t even remember, I think I was too upset to remember clearly. It happened to be on a Friday of a weekend where there was a public holiday on the Monday. And the nurses that I spoke to were unwilling to release her from that confined separated space because they needed the green light from the doctor that was treating her. And the doctor that was treating her was only working on part time basis anyway so wasn’t there. Well we couldn’t contact her and so she just ended up staying in this space for probably four or five days or more.

Note: It is likely that the person being cared for was placed in seclusion not isolation.

Another experience I had which upset me, upset my son immensely – was he was very ill. I had to take him to a city hospital, a psychiatric hospital. While he was being questioned by the doctor, the psychiatrist in charge, my son asked him a question which the doctor felt threatened by. He called three psych nurses in. They held my son down and injected him to quieten him down, which, to me, he wasn’t doing anything wrong other than asking a question which the doctor felt threatened by.

On my occasions of visiting him in that hospital it was just heart wrenching, the conditions. He was drugged up all the time. He wasn’t clean. He was unshaven. And he wasn’t the only one that was – you know, it was just heartbreaking to see these people laying round the floors. They were just medicated. I understand that it is needed at times, but – so my son has been in three different psych wards, psych hospitals.

One of the hospitals had a home where they could share close to the hospital. My son was there for a while, but the powers [that] be, shall I say, the staff, felt that the clients there were well enough to manage their own medication. Twice my son overdosed when he had 24 hour nursing care because he felt ill and he thought if he took all his medication at once they’d make him feel better.

And he had to be driven about three quarters of an hour to a hospital to have his tummy pumped out. So that was when he had 24 hour care. I know these hospitals. We need them, but we also need to have good caring staff there, not people just there because it’s a job and pay day’s good. And I know it’s a stressful job and everything, but they’re still a patient.

My husband’s unwell. He’s in hospital. He’s got a background. His father suicided at 59, three uncles suicided round 60. He turned 60 a couple of weeks ago. And once again, he’s been depressed. He’s been on antidepressants for two years. He goes to the doctors, he’s really depressed. He told the doctor, “I want to die. I’ve planned it out”. The doctor rang, trying to get him a psychiatric appointment. This is in October this year. The first date the psychiatrist could see him, and this is urgent, 4th of February. Our mental health system is an absolute joke.

It even got to the point, we’d get up during the night and I would get up tip-toeing behind him to make sure he was going to the toilet, that he wasn’t going to go out to the shed to hang himself. I’d hidden all the ropes. But if someone’s determined to do it, they’ll do it. It was [an] absolute relief when he said it: “I need to go to hospital”. We go to the hospital. I’d rang his psychologist, he said, “Take him to the hospital”. Which I did. He had – he rang the hospital and said, “He’s coming in. You need to admit him”.

We talked to the lady, triage from mental health and after about 20 minutes she goes, “Well, you’ll have to come back tomorrow, because we don’t have a bed. Will you be alright till tomorrow?” I said, “No, he won’t be alright till tomorrow”. She said, “Well, we don’t have a bed. Very sorry, we don’t have a bed anywhere”. So I got up and I said, “I’m really sorry, but you’ve spoken to him, you have a duty of care and I’m walking out. I’m leaving him in your care. I’m walking out. I’m not taking him”.

And I walked out the door and I sat in the car park, because quite frankly I don’t trust the system. It wouldn’t have surprised me to see him come out and be put in a taxi and sent home. So I sat there and about 15 minutes later my phone rang, “Would you mind coming back to the hospital, we’ve found him a bed”.

It seems to me the next issue is in relation to mental health care itself and the fact that there just isn’t any, sadly there isn’t any. In years gone by we had places like [former psychiatric hospital], which were seen as places of horror, houses of horror, that provided treatment that some people, do-gooders if you like, in the community saw as being over the top. However, closing them down simply meant that there was just nothing.

It has left a hole that has never been filled and I’m sorry but people like my son need a hospital type environment. The sort of environment that’s available through organisations if you have private health cover. Like for instance [clinic] or the [clinic] where people can go to have medications reviewed, changed, monitored properly. Where they have access to psychiatrists and clinical psychologists. Where they have access to group therapy. Where they can freely talk about their problems and how they deal with them. Where they can have access to AA meetings or [Narcotics Anonymous] meetings, and to get them well.

My son was in hospital at that certain stage, because he was unwell, so was being treated. I had visited him that day, which is an hour’s drive away from home. During the time I was there I spoke to the nurse in charge, and I got a good report, well, as good as it could be. There was no mention of anything out of the ordinary. That evening, about dinner time, I received a phone call from the hospital to say that [son] had been discharged.

The reason was his behaviour. It was wet, cold winter’s night when he was discharged. He didn’t have any relatives, anyone he knew in that town. He didn’t have any money. So he was out on the streets. And the only thing I could do, I phoned the police, asked the police if they could please find him for me, which they did phone me, and they kept him at the police station, comfortably, until I arrived – another hour’s drive up, an hour drive back.

I was angry. I was disgusted. I was worried. I wrote a letter to the hospital about it and complained. And I did get a letter back apologising it had happened and that it wouldn’t happen again. But still, that wasn’t the point. The nurse in charge had no right to put anyone out on the street like that. So that was a bad experience with the hospital.

We’ve got the PARC programs which I think are great because somebody can go there for – they were looking at a month to six weeks but I think they’re looking [at] about a month now and they may not need to go to hospital because they’re having the timeout there and there’s the support there. And it could be an early discharge from hospital – they go there instead of going home.

That is therapeutic for the person, plus it is respite for the family if they live with the family, or even if they don’t live with the family, the family is still doing the monitoring – you know if the person’s got their own accommodation. Some of the accommodation people have got like the SRSs, this area, pretty substandard, takes all their money. So their quality of life, you know, it’s better than being on the streets, I admit, but I guess, yeah.

So we’ve got PARCs. We’ve got [supported] residential [services] …

The CCUs, the Community Care Units. It has clinical staff and nurses 24 hours and there is a – it’s a rehab unit basically. I think it’s, they’re looking at six months now. It was you know, two years placement there. They seem to be containing everything. But I think there are people [who] have been there longer than six months. But when it was opened it was meant to be for people who were coming out of the institutions.

And it was meant to be for life originally, so it was long term. Well, that was for the people who were in – you know with de-institutionalisation – the majority of those people have passed away I should imagine. Some were relocated into housing because they did change it. But originally it was for those people for life. But then it was a rehab and that was about two years. But they’ve gone to six months and it – look, they change over time as to what – the expectations of someone going in.

Now it’s voluntary, so no one can be forced to go there. And they’re there to work on skills and making them more independent, that could be socialising, budgeting, cooking, cleaning, you know, it’s that sort of. One man I know there, he’s looking at getting back into the workforce, which is good. So he’s working up his skills and confidence and that was why he went in there and that’s what they worked on. So it has changed. It has changed a lot as to how. PARC at the moment is yeah, what it’s set up to be – like a’ step up, step down’ there. We could do with more of those.