How to increase participation in decision making

I don’t think it really helps the situation if you feel like your decisions are being made by other people. I don’t see how that in the long term or the short term helps you become, your quality of mental health become better.

Like maybe the treatment will become better, but when you become mentally unwell, there’s the illness, but there’s this other thing that becomes broken in you. And the more you feel and the brokenness is apart from you not being able to trust your own mind and you’ve lost control. But the feeling of losing control is also because you’ve got the other people making decisions about your life and this very vulnerable state you’re in. So they might have good intentions but yeah.

The therapists and psychiatrists being equal with the person, not imposing their own ideas and views and, “Yes you can go outside and have a smoke, no you can’t go outside and have a smoke. You’re too sick, we’ll keep you in this little isolated room”. Now as far as I’m concerned, if you’re not hurting anybody else, then why punish you?

It’s interesting you mention the idea of equality in that space, could you talk to why that’s important, as somebody who…

Because with a mental illness, we go through so much discrimination and inequality. And doctors have put themselves up on such a high pedestal, and they impose their structures on us, from the outside. And they don’t know or care what we are going through. They don’t listen to us. Most of them don’t listen to us. We would probably see a psychiatrist for about 15 minutes once every three months. And the treating clinicians, well you can get good ones or you can get bad ones.

I went back to the psych and started on LUVOX (fluvoxamine) because I did have a discussion with him about side effects and how prohibitive I felt the prior side effects had been. So together we sort of went through the list of SSRIs and the possible side effects and there was more of a collaborative approach to what medication would be best fit for me.

Whereas prior to that I feel it had been more dictatorial or perhaps that’s too harsh a word, just it was directive and I felt like I didn’t have as much support in having an input. Together we chose a drug and LUVOX (fluvoxamine) was the drug and I’ve found that to be much less it has less of an impact in terms of side effects. It still has it’s, you know, some side effects.

So I don’t think it had really worked. And that’s the one thing that my psychiatrist currently, she’s happy to work with me actually on that, and say, “Okay, well if it’s not working why are you on it?”

And I said, “Well because everyone says I should remain on it”. And she’s like, “Well if it’s not doing anything, and in some cases it doesn’t, then there’s no point and we need to start weaning you off it and look at psychosocial issues that might be impacting instead”. Which is I think a very progressive way of thinking and one that should be adopted more regularly within the medical field. So…

Wow. So you’re currently working with her about…

Yes. So yeah, I mean I just think the person that I have who, I mean she took me on by fluke. You know, I just think she’s the best thing. Like I’ve had so many psychiatrists and they’ve all been pretty much the same in terms of their approach and attitude.

It’s helpful to a certain extent. But I think you need to go – it needs to be gone about the same way that they do in like, you know when you’ve got a toddler? And when they’re going through the terrible twos and the method to stop them from cracking a tantrum, saying no to everything, is to say here are four or five choices.

Maybe two or three depending on you know, how much they’re able to process at a time. I want you to pick one of these. These are the choices but you need to choose one. And I think that needs to be adapted for adults. Like you’re not well. That is the reality. Like sick people do need to be told this is the reality, that these things are not well.

But they need to still be given some level of choice. And I think that would make a lot more success. Like if someone can at least say, “I chose this”. It just helps. It helps you feel a sense of power about yourself when nothing else has. And when everything has been… When your intervention and there’s doctors and there’s medical things and you have to face the reality that you’re sick, it’s a really powerless feeling. Like it’s just, “Oh God, I’ve irretrievably screwed up. I’ve really messed up”. And everything kind of hits you at once. Like you’ve hurt people without meaning to. You’ve hurt yourself without necessarily wanting to.

Because it’s very important that a person is treated appropriately against, when they’re put in hospital against their will. And it’s important because a lot of them have been, people have had really bad experiences in the past, through being restrained, through being put into seclusion, through being treated badly by staff and not treated appropriately. And will sort of… I think something like the advanced statement would reiterate to staff about you know, what the patient wants in their care.

And so that when they go to hospital the next time, they have confidence in the healthcare system, or the public mental health system, that these health professionals will follow what it is that I want and how I should be treated, with respect and dignity.

But anyway, I’d had this bad day before. The next day I was asked to go in to a meeting, now I didn’t have any idea what the meeting was about. I walked in to a room and there was probably, there was a lot of people, probably about a dozen people in a circle sitting down in chairs, and they sat me in a chair, in the middle of the room, and I thought, ‘Okay, what’s going on?’ And the first thing that, you know, the main guy said to me was, asked me how I was feeling. I said that I was feeling fine. I don’t really know if I was or wasn’t but, you know, when somebody asks you that’s pretty much what you say, well that’s how I dealt with it anyway.

They said to me, “Well you’re leaving today”. And I obviously had a look of shock on my face because I thought, well, I didn’t think anything had been fixed. I guess I was feeling that there should be some kind of resolution here because I didn’t feel any different to when I first was admitted, and even thought it’d been, you know, a couple of weeks by this stage.

And said oh, you know, I think he started telling somebody off, I could hear him saying, “You know, we should tell them what the rules are that, you know, if you have two good days and then they’re out”. And so saying like, you know, “I can see that this is a surprise to you”. And I think I became a bit emotional because I was worried about, you know, ‘Like I’m outta here, nothing’s resolved, you know, this isn’t good’.

And the psychiatrist, who I’d been speaking to, could see that I was distressed and was sort of like, you know, ‘We’ll talk about this, don’t worry’. So that was about it for the meeting. I went out in to another room and probably an hour or so later the psychiatrist who I’d seen came out and, you know, he apologised about the meeting and about, I think more about the fact that I was leaving, because that was, you know, that was happening. And so I thought, ‘Okay, well I’m going, all right, sure’. And he hadn’t organised anything, because the psychiatrist who I had been seeing I stopped seeing when I came in.

So as you’re saying, the psychologists and that kind of thing, you’d be very conscious of how you were presenting and…

Yeah, and I would always go in and my mum insisted in sitting in on every appointment which she thought she was doing the right thing, so there’s no qualms about what mum was doing. But I didn’t feel that I had the freedom to actually speak out and reach out for help because she was there and I didn’t want to worry her or be judged by her. So…

Do you know why she was wanting to be in the room?

Because she wanted to hear what I had to say first hand, so she was doing it for a good reason but it probably wasn’t the best thing to do in order to help me.

Yeah, I felt quite supported in the hospital. They also had a lot of parental support groups so like parents of the people there or the inpatients could come in like once a week and they would chat to the psychotherapist and psychiatrist and stuff. And, kind of be kept up to date and my mum told me that all these other parents would kind of talk to her and say like, “I don’t I don’t understand why your daughter is sick, like she’s really intelligent and you know, she’s talented et cetera, blah, blah, blah, blah”.

I just heard someone mention it and then I followed up on it on my own. And I wasn’t in a great place when I first found out about it, so I waited another, probably another month because I was going through a medication change at the time. And then I sat down and really wrote out some things and it’s you know, it’s not just about my medical treatment that I’ve got in there.

I’ve got things in there about the fact that if I need to go to hospital then I need to be reassured that someone’s looking after my dogs, like that has to be in there because that’s critical for me. If I’m in hospital but I’m worried about my dogs I’m not going to get well, so I’ve written quite a lengthy advance statement but it’s quite broad and it covers a lot of things. Probably some of them are a little bit pedantic, but I’d rather have all my bases covered.

Could you tell me what’s in it?

Oh to be honest with you I can’t remember. It’s just, well I’m not consenting to ECT is in there and not consenting to a few different medications.

Could you say which ones?

Yeah, I’m not consenting to ZYPREXA (olanzapine) anymore because I was on a ridiculously high dose of that at one point and put on 30 kilos and I’m still losing the weight. And I’m not willing to go through that again because the side effects were worse than the positive effects.

And lamotrigine was one because that gave me facial tics. Oh and any antidepressants because they just don’t work for me and they’re just too expensive for no benefit. So I’ve requested that someone’s available to care for my dogs…

And that you’re assured of that.

And that I’m assured of that. That I’m allowed to where possible, where I’m not at too high a risk, to be able to go home on the weekends, not even for an overnight stay, just for day leave to actually see my dogs and to spend some time at home because the shift from being in hospital in that institutionalised environment, then coming back home where there’s no structure can be really hard. So to be able to spend the weekends still with that dose of reality would make the transition from hospital to home easier for me.

Oh, the other thing that’s in there which is really silly is around the fact that I would be supported to go and buy myself a sandwich if there’s like a shared lunch or something on because when I’m unwell I find that I can’t deal with the fact that I’m sharing food with other people, so that’s in there. Oh, that no phone calls get put through to my room and if people want to contact me they can ring my mobile. That way I’ve got the choice as to whether or not I answer it, because I can find talking on the phone when I’m unwell quite anxiety provoking.

Yeah, well, I think, you know, you have to sort of have compromises. So maybe if people have got advance directives, where they’ve written down, I will not take olanzapine because I react badly to olanzapine. And, you know, I really respond very badly to seclusion because of my childhood trauma experiences and so on. You know, and if I do become anxious or you feel I need to be restrained in some way, it might be best to call my support person to be with me to, you know, support me.

I think, you know, if they can write things like that in an advance statement and, you know, I mean, if the psychiatrist felt it was best to give electric shock therapies and the person had a support person who didn’t want electric shock therapies, you know, what’s the resolution of that? It should be that the support person should have their way, I think. I mean, I know my family would be very anti shock treatment, you know, if they were the support person in those situations.

Probably my mother would say no, you know, but whether the psychiatrist would win out or my mother would win out, I don’t know. Yeah, I don’t know. And in this new Mental Health Act, that is written down, isn’t it?

I think, yeah. So, that’s interesting, but, I think some people have reactions to some of the medications, you know. So I think that it’s important that you can write those things down now in an advance statement, so it’s on the record. But it’s a matter of how those advance statements are recorded and where they’re held and who’s responsible for keeping them and you know.