How to increase carers’ participation in supporting treatment decisions

Now the Act has made it very clear that the carer, if the permission’s been given by the client, they know what they’re doing. The carer’s as good as talking to the client. Confidentiality is, sort of, between you and them now and you can get more information. They’re trusting carers more, I think, but you still have to build that rapport and again, in the public system, we’re going through so many psychiatrists that it’s like a big circle of them too. So, getting back to where we were…

Rapport with psychiatrists?

Oh yeah, you need to get a rapport going with the psychiatrist. If you, as much as the Act is very great, it’s great and this is what we were out to achieve, this is what we want now, unless you’ve got that rapport going and that trust element going between the psychiatrist and yourself as a carer, they’re still going to be a little bit reluctant. They’ll take on board what you’re saying, but you’re not necessarily going to get, achieve fully what you wanted.

Were you kept informed, when he was hitting the low point, of what was happening?

Only, not very well. I mean, it was only because I was there. I mean, I can imagine if I wasn’t there, I don’t know that they would even ring me, really. But when I was there, they started talk … they never rang me, I had to ring them, and if I was at home, I’d ring the nurse or the desk or whatever, and might say, “How is he?” or something. And I’d get vague things, like, you know, they certainly couldn’t tell me too much over the phone.

That was the other issue. When I was there, because they could ask [son] what was going, it was all right, I was able to get more information. But if I wasn’t there, over the phone was always a lot trickier, depending on who I spoke to. They could give you, I don’t think they really gave me any details about what drugs he was taking or anything like that over the phone. But, oh, he’d had “a restless day” or he’d had “a good day”, or something like that, I’d get that sort of information.

Yeah, the privacy stuff was tricky, and it had been, I suppose it had been coming a little bit when, as he grew up, like I knew you just don’t go into the doctors with your grownup children, sort of, particularly. But I always, I only thought that was just because it was sort of, I thought I’d always be told somehow. You know, that was just being a bit naïve, I suppose.

You thought you’d always be told if you asked? Or did you find that if you asked you were told? Or did you find you were asking and not being told because they’d appeal to – appeals would be made –

[Overspeaking] Yeah, I don’t know, I somehow thought that they’d, it was probably unrealistic, but I think I thought I’d be informed. Like if there was some sort of test or something done, and there was some information, that I’d actually get the information. But of course you don’t, but I could ask. And then I generally got information, like I said, once he was in hospital it was all right, and he had given permission, then it was all right, I got more information.

But you had to be, oh, like I said, you had to be there or on the ball to get it, to know what was really going on. And I didn’t know that the police were called to take him when he was taken to the [hospital], they just said, “Oh look, we’ll get him to …” you know, sort of, “Off you go, we’ll get him to the [hospital] and you can meet him there”, or something. And yeah, the police came and he was in a divvy van and everything when they took him off.

What did you think about that when you heard? When did you find out?

[Son] told me. No one else told me about that. And he said, because they had to trick him into getting into this van, and they said because they basically had to say, “You’re going off to a ceremony”. He thought he was, he had this thing about some sort of medal he was going to get. And so they apparently, they had to sort of tell him because he didn’t want to go, obviously, to wherever they were taking him and they had two or three policemen there. And of course [son], as I said, not that he was violent or anything, really, at all, but they obviously didn’t want any trouble, and they told him he was going off to get a medal, so he got in the van to go. So he was very disappointed when he got there and it wasn’t.

The psychologist was more, yeah, open to hearing what I had to say. And giving feedback about what was happening at home. Because yeah, I had no idea what they were talking about in their sessions. But I thought it was important for the psychologist to know what it was we were seeing to be able to help her. Yeah, maybe she just listened to me and then ignored it all but it helped me to know that I could at least give some input, some feedback and get some. And she did, the psychologist was able to sort of give me some advice myself in terms of it, yeah, you can help with some structures and things that could help and keep encouraging her to be getting to school and that sort of thing.

So do you see then, is there – is there something of an issue around the privacy laws* whereby it might preclude a bigger picture of the circumstances?

Oh definitely, yeah, so…

Could you talk a bit about that?

Well, yeah, so if someone who’s experiencing depression is talking to a medical professional and there maybe there are things in their life that they’re not actually ready to acknowledge or come to terms with but they’re living in a family environment, where people know what, well know what is happening on a day-to-day sort of basis. And maybe that is something that would be useful information for the psychologist. That’s what I think but there doesn’t seem to be a formal way of having that in place. And particularly where it’s a situation where you’ve got a child and you’re, as a parent, you really feel that you should be involved in some way.

Note: This website does not endorse this reference to ‘privacy laws’, which is incorrect in this context. The relevant section of the Mental Health Act 2014 (Vic) is 346(g), which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, while section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.

On Sunday she was in tears in pain and this young psych decided that it might be a good idea to go over and get a bowel x-ray, just to shut me up, if nothing else and I went home, because there was nothing more I could do and she just wanted to sleep and rest and do whatever she could. I got a phone call, about two in the afternoon, saying, it was that psychiatrist, said, “We just got the x-ray results and she’s got a severely impacted bowel” and I said, “Oh, so now you’re surprised. I could have told you that and I did tell you that four days ago”. “Yeah, so we’re going to have to do something to get that fixed up” and I was just shaking my head.

They gave her one little packet of some orange flavoured gel, expecting an impacted bowel to move with a packet of Fibrogel or whatever you call it. So I went out on Monday and she’s still in absolute agony and I said, “Look guys, I’ve had this before and you need to give her eight sachets of Movicol and get…” I told them all over the formula again. I said, “I’ve been through this and I know what she needs, I know what it’s like”. So they kept giving her one sachet and don’t forget, this is now almost going on to a week, because by Tuesday it’s going on almost a week of it still impacting and getting nowhere. It’s like taking a watering can to a bushfire, giving her one sachet. It’s no good. So, Tuesday, I said, “Have they done anything yet?” “No”.

So I rang the GP [General Practitioner] and said, “Listen, mate. They’re not treating her properly when it comes to that and how dangerous is it going to be if I do it?” He said, “I never recommend anybody going doing something like that, but”, he said, “It’s not going to be any worse than she already is because it’s not a medication, as such. So it’s not really going to hurt”. I said, “Okay, well then”, and I went to the pharmacy, because it’s just over-the-counter medication for it, right? So it’s not like anything, I won’t, I never do anything unless I’ve either thoroughly researched it and run it by a medical health professional, sort of thing, to make sure I’m not doing the wrong thing.

So I went out on Tuesday and see, remember I was telling you that it’s like a prison camp so they were going to search me high and low and they were going to take them off me. So I went and bought a bottle of aloe drinks, she loves this aloe drink, it’s in a green bottle and then I drank some of it out and I put my eight sachets of Movicol into the drink bottle, mixed it all up, put the lid on, put it in my backpack and then they come and see if, I said, “Oh, I bought her out a drink, just to give her something different”. “Yeah, off you go”.

So there I am, I’m all of a sudden I’m in this hospital, Tuesday night, about eight sachets of Movicol in a bottle and I said, “Here go, drink the lot of this”. Oh, and she was in tears, “Finally, someone’s doing something”. She just drinks this whole litre and a half of this stuff, knowing what it was like and then I filled it up with water and she’s standing up still, you know, trying to – she’s trying to get more in, the poor thing and she couldn’t. Anyway, once it was in I said, “Don’t forget, just keep on drinking as much water as you can and it will help it work” sort of thing.

Well, three o’clock in the morning it decides to let it go in the bed. So she had the entire bed, the floor, the lot and she cleaned herself up and then went down to the nurses’ quarters and said, “There you go, you can go and clean your mess up now, because I’m not cleaning it”. They hadn’t listened to her in the first place. If they had have listened to her and done it like I said, first thing in the morning, she can then hang around close to a toilet and once it let’s go, once that Movicol starts working its way through, when it goes, it goes. I’ve been there, I’ve done that, I know what it’s all about. So she had great pleasure in telling them to go and clean it up.

So, next thing, the next day, right as rain, she’s back to normal. She can sit up, she can stand up, she’s normal. It’d cleared everything through, her whole system and psychologically, she was so much less depressed because, ‘Finally, I’m not in pain’, or anything like that and she was still laughing at having to get them to clean up the bed. She thought it was a big joke. It was like, ‘Yeah, the joke’s on you, you should have listened to my husband’.

And I got no apology from them saying, “Well look, you know, maybe we should have listened a bit more”, and that’s why the new changes to the Mental Health Act last year where there’s more input from carers and all of the rest of it, that’s so important. Because they could have saved anguish, cost, they didn’t need to have all that cleaning cost, more importantly, they didn’t have to have another x-ray taken, bring in a technician on a Sunday, whatever they have to do. All of that could have been avoided, just by simply listening and saying, ‘Okay’.

And you read the packet of Movicol, or the box, and it says: “For a severely impact, for severe impaction, eight sachets”. I can read and I’m not a doctor. It says it there and that’s what we initially had been prescribed by the GP [General Practitioner] to take, prior to that. He said, “One’s not enough, you need to take the full eight and then drink lots of water”. So I knew what I was doing with it and I’ve used it three or four times prior to that, but I also knew the symptoms, you see. So, yeah, now remember, she is at the moment at the psych unit as an involuntary patient, showing signs of an overdose, which wasn’t an overdose at all but it was, in actual fact, a medical problem of constipation.

It took me two weeks to talk them into taking her and discharging her, taking her off involuntary because by doing that they were admitting they were wrong, you see? Because, ‘Yeah, oh, sorry. Yeah, we’re wrong’. She didn’t need to be there as an involuntary patient at all. It was the bowel and all of that. It was causing symptoms similar but they couldn’t admit it, so by taking her straight away from involuntary to voluntary and discharging her, was not in their best interests because already I’m saying, I’m telling them, “You guys were so wrong”. So they kept her in as an involuntary patient for another month.

Yeah, I’m able to, I have that connection now with our GP [General Practitioner] and the psychiatrist that they … because the GP we have has known my son since he first became unwell. We have a good relationship there and my son has always wanted me to go with him to all his appointments. Yeah, I’m very lucky in that way that I’ve been able to sit in on all his appointments and listen to what’s being said. He agrees to that. I know there is some – rules is not the right word but he could say to me, “I don’t want you to come to this appointment”, and he’s – by right, that’s the way it goes. So I’m very, very lucky that I’ve been able to sit there, listen to what’s – the interaction.

I try not to take over from what my son wants to say. I want him to say it as he sees it without me going over the top of him. So that’s why if it’s really important I try to let the professionals know. It doesn’t happen all the time. I can talk to them in front of my son and I might say, “Is there something else you would like to tell your doctor today, how you’ve been feeling the last week”. Or, you know, I’ll try to lead him into that path or the doctor will pick up because we have that long-term relationship. He will pick up that I’m trying to convey, ‘Yes, there’s something else happening’.

And that sounds to me really [to be] coming out of a concern of your own that his voice should be heard. Do you say that that’s part of [supporting] his independence or even autonomy in a way?

For sure. Yes, you know, I really feel that the doctors, professionals should listen to the person with the illness and listen to what they have to say and how they see their illness, their perspective of their illness. And if they can acknowledge that they do have an illness because even after a long, long time my son would not acknowledge that he had a mental illness. Yes, so I think the person should be heard and that’s why I try not to take over in an appointment but be subtle about it.

If they involve the carer in the treatment decision and they listen, we can … this prevention state, it can be done. We can catch the person before hitting rock bottom. Because it doesn’t happen overnight. Hitting rock bottom, it doesn’t happen overnight. There are stages that the consumer will go through. Sometimes they stopped eating, sleeping. They neglect their hygiene badly, they hear voices. It depends on the sickness, the voices, the talking, imagining stuff, paranoia. So there are bits and pieces there where the puzzle can be put together before hitting rock bottom. So if they do that, involving the carer in the decision making and they work with the carer closely and the family, the carer doesn’t have to be a mother or it can be a friend or a sibling. So they can have this prevention and we can have a better outcome but first we need a proper structured treatment plan.

Well I’d been talking a lot with one of the consumer team leaders about what’s missing for the consumer themselves, the client themselves. Not so much about the carer, but –

When was this?

This was two years ago. Because I was finding more and more information out of places I could go to get help in the caring role. Not help for me but as a carer, to help my wife and we were talking about at what stage do these services come in and start helping and talking about it and things like that? Because, right at the moment, I think you’ve heard me talk before about ‘the revolving door’, where you’ve got a patient goes to a psych hospital, gets discharged, ‘Okay, you’ve had your holiday, we’ll see you in 12 months’ time or six months’ time’, because it’s a ‘revolving door’. You’re not getting any, they’re not making any headway once they go home. In fact, if anything they’re going back and a lot go back into that same sort of scenario, so you’re only going to go straight back to where you were.

Now, what we were talking about was, is there, at any stage, where you can intervene? So we had a working group going. It’s sort of like an intervention in any particular area, so that, before the advance statement kicks in and the need for that and the full on admission or psychiatric assistance and that and being normal, while they’re normal and making out that advance statement, after that’s all been done with the hospital and that and the discharge, we wanted to look at something that, ‘How are we going to help you and what triggers are there and what sort of things do you know that we can jump, when we can jump in, so that you’re not having to go into hospital again?’

We can possibly help in little things. You know, ‘I’m starting to feel that depression coming on and it’s being caused by’, whatever, ‘Do you need to talk with a psychologist now or you know, can we do something now? Are you able to get out? Are your bills getting on top of you? Do you want us to help with those? Do we need to make phone calls for you?’ Because some mental health patients can’t even ring, you know, their power company or anything like that, so their bills could be mounting and that’s depressing them more.

So we were looking and, of course, you’ve got the privacy side of it and at what stage do we start talking to them and that? So when they’re a lot more compos mentis, they fill out this or have this discussion, similar to the advance statement discussion, that is, ‘Look, if these sort of triggers or these sort of things I mention, I would really like you to start doing this for me’, because the whole idea of that was to stop the end result of a psych admission to hospital. So you sort of call it early intervention, was what we were looking at and different things along the way.

And then of course with the changing of the Act and making it a lot easier now for carers and that to be involved, it meant also that carers are able to discuss more about these are the sorts of things we need to be doing right now and people are taking carers a little bit more seriously now than they ever did, because it’s legislated. And it’s helping in a way, to sort of get around the Privacy Act* because the patient or the client has already said, “This is my carer. My carer needs to know everything. I want my carer to know everything, because they can’t do their job without it”. Before it was like, “Oh, well that’s really covered by patient confidentiality” and stuff like that.

Note: This website does not endorse this account of privacy legislation, which was this carer’s understanding of the Privacy Act at the time of the interview. The relevant section of the Mental Health Act 2014 (Vic) is 346(g), which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, while section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.

Yeah, it’s really interesting that you bring that up because I’m actually sitting down with mum on Friday and we’re going to start to look at a way of getting something down on paper, so that when or if he does get to a point where he needs to go into hospital again, when will that point be and how we handle it. And, you know, I think that initially it was a matter of, ‘Oh my god, we’re just in shock’ and then it was like, ‘Oh he seems to be getting okay’, so there was like a little bit of denial really of like, ‘Oh well, we’re got over that hump, it’s all okay now.’
Then when he got sick the second time that was so, that was definitely the most traumatic one. We were just in shock again and just didn’t want even think about it and then this recent time it’s been like, ‘Okay, enough already.’ This could be an ongoing thing, we need to sort of have some sort of way of managing that and also not waiting until it all sort of becomes terrible and is looking like he has to go into hospital before we sort of talk about these things. I think there’s been an element of denial when he seems to be travelling along okay, that we just, ‘Okay, we won’t talk about it.’ You know, ‘We won’t talk about it amongst ourselves and we won’t talk about it with him.’

And so we’re going to actually start, I think mum and I are going to sit down and sort of talk about well, what, what how do we sort of see it working and you know who’s our team, like who’s involved in this process and then sit down with my brother and say, “Well, how’s this going to work, you know. And that will be, that will be interesting, because there is a bit of a fear of, “Oh if we bring it up he’s going to crack it” and so therefore we just won’t bring it up. But I think there is an element of this is part of the coming to the acceptance around the illness and you know, his life and our lives. Yeah, so we’ll all sit down and look at I suppose how we sort of see it, what we would like to have happen and also look at, I think, getting really clear on what those warning signs are, so that we can refer to that in future. And I’d also like to get really clear on, okay, at what point do we say um, “He needs to be in hospital”. So we’ve got to, I find things so much easier when they’re written and out of my head and in front of me and just for clarity sake, so it’ll just be really sort of simple. And then getting really clear on, I suppose, also managing the responsibility of ourselves and our recovery. So you know, talking with my mum about, well, what are we going to commit to doing? What sort of support are we getting for ourselves, yeah, so I think just getting really, really clear and having that discussion. I think we haven’t really had that so, yeah, how are we going to support ourselves and, you know, what do we expect?

That’s where I think it’s important that there be this nominated person or a carer. It’s important that on that patient’s medical records in big red letters: ‘carer, nominated person, name, phone number’. “Okay, we’ve got Joe Blow here. The police have brought him in. He’s unwell. We’re ringing you. Can you come in? We need to have a talk about how he is”. You know, and that’s how it should kick off from there. And the person who’s unwell, they’re obviously, they’re not aware they’re unwell. They haven’t changed. From their perspective they haven’t changed, they’re fine. It’s suddenly the people around them in the world has changed [noise of chook in background]. They’re not aware. They can’t see it coming.

My husband was lucky. He knew. He accepted he was depressed. And it was an article on SBS that actually triggered him into, ‘I need to go to hospital. I’ve got a real major problem here’, and gave him the courage to talk. We were lucky. His father didn’t have that. His father suicided. He was mentally unwell. We could see he was mentally unwell. We could see what he was going to do. We took the shotguns. We took the knives. We took the ropes. We checked on him three and four times a day. And the day we couldn’t find him was the day the shed door wouldn’t open. And I couldn’t open it, so I had to come home, and no-one could find him. And then, later on, his mother found him. The shed door wouldn’t open because he was hanging behind it, dead. And I’m just glad I didn’t push that door open.

But we could all see he was mentally unwell, but we didn’t have the right to go to the doctor and say, “He’s unwell, you need to put him in hospital. He’s going to kill himself”. The police didn’t have the right to say, “Hey, we’re taking you to hospital. We can do it the easy way, or we’re going to cuff you and take you”. And these people who are mentally unwell, and it sounds harsh to treat them like that but for their own sake and their family’s sake, we have to at times. You have to. And I think the law makers need to really have a dose of reality and make these laws. And they’re not protecting just the person who’s unwell. They have a responsibility to protect society. If their carer, their nominated person, rings the police, hospital, and say, “Hey, they’re unwell, they need to be in hospital now; for whatever reason: they’re not taking medication”, who knows? Bang. That should set in, right, the police pick them up, they go.

And then in terms of the plan of action from there you mentioned that you would then take that to his current case manager?
Yeah, so once we’ve got clear between the two of us of what we’re hoping to achieve, I think it would be really beneficial to sit down with his case manager and talk to him about that [sound of pet dog snoring in the background]. And, you know, what his experience has been, what’s worked with them, and sort of yeah, use his knowledge to, to build up a more sort of robust plan of you know how we can sort of see it working in the future – Yeah, I think getting an idea of what those early signs are and then all being sort of on the same page as to where to go from there, I think.

And having someone external to the family to sort of walk us through the process would be really valuable, because I find that what happens when we try and do it ourselves is, we can just go in circles a bit, and sort of fumble our way through it. And, yeah, I think it would be really beneficial to even have this conversation with my mum on Friday, because it’s sort of been like, you know, crisis point, relief when that’s over, and then denial of like, you know, it’s all okay now, it’s sort of like treading on eggshells a bit. Like, we don’t want to talk about it; we don’t to think about it, because it’s okay now, until it happens again.

So it’s really I think a little bit of coming out of the denial that that we need to sort of manage this in another way. So I think that that’s been part of my mum’s way of dealing with it, is just to keep really busy and just, you know, ‘We’ll be fine’. But I think we’re very lucky in 2014 in Australia that there’s this sort of thing happening, that there are support people out there. There, you know, it’s not perfect as far as what the government is spending money on, but it’s certainly, you know, we’re moving in the right direction.