Advice to others: Health, mental health and allied health professionals

I think that everyone should have a say in, like their treatment, in their care that they’re receiving and all that. I think that everyone should have at least a little bit of control over where things are heading and should, if someone, says “No” to something and they say, “No I want to try this or whatever”. I think health care professionals should really be open to that idea of listening and saying, “Okay you know, this isn’t working the way it should”.

Like for example, my problem with my weight and stuff like that on this medication, you know. I think they should be open to the fact that maybe we could try possibly try other things in the future, sort of thing because everyone has a right to have that chance to try something else, you know. Or even going on a CTO, they should be told, you know. Like to me it wasn’t much of a difference but I can see how other people would feel restricted by it.

They really should have a say in whether they can appeal the decision or the CTO should be – how do you say? Like whether the CTO should be so rigid? Like rigid as in if they’re living a long way away from where the depot clinic is or whatever, they don’t have to come in and report twice a week to their case manager or whatever conditions are set out in the CTO. I think that’s a bit onerous on them, sort of thing.

So, I think it was, it’s always been that sense that someone’s invested in you, rather than, you know, you’re one of numerous people that they see. And even the person who I’m seeing now, initially in the relationship it was that it felt very much like I was just one of many people and I was constantly telling the same story until he remembered me. But it was just okay, I don’t have a lot of option here, and it came good, in a sense, because now they’ve remembered me, they’ve invested in terms of wanting to try and support you, by talking about, you know, maybe what options there might be for me to have. Or to remind me to be a bit easier on myself, or, you know, to suggest things to me, give me homework, things to work on. I think that’s always been good. That sense that, you know, you can move through it, that I’m able to deal with it.

I think it’s really that, some kind of follow-up, or, you know, case management or something along those lines. I guess I never really felt that there was anybody ever following-up, that I was still getting help and never once received any phone call from any organisation saying “Look, you know, are you still seeing doctor such and such? Are you seeking treatment?”

And I don’t see why that would be a bad thing to do. I think it would be nice to know that somebody is concerned or is interested, because I guess I’ve never really felt that. It’s always, I’ve always felt that the services are so under resourced that they can only deal with people in crisis and that if you don’t fit that, then you’re on your own. And sure maybe that’s the reality of it, but, you know, they could always have time for a phone call and say “Okay”, you know, “Here are some options”, “Here is, you know, a way to access treatment”. Rather than, you know, having to work it out for yourself.

He’s honest, he’s friendly. He doesn’t ask too many questions. He goes straight to the point. He asks questions, “How’s your mental state”? I say, “Good”. He leaves that there, he doesn’t probe. He doesn’t ask me question after question, you know: that’s the best part about it. He’s flexible. I get to see him. There’s no rotation of doctors. There’s no waiting an hour or so in a clinic waiting to be seen.

Rotating doctors, some people get a doctor, a different doctor, once every three months. You sit down with the doctor, you tell them your life story, you get comfortable with your doctor. Three months later, three visits later, they say we’re going to hand you over to someone else.

And it’s very, very annoying that people in the past, I’ve had to do this. Actually I’ve had to sit down and say my life story every three months. And then they’ll ask me like, “Oh are you taking medication? How are you? Tell us about your life. Do this, do that”. It’s less of a hassle for me to see my GP, and it’s much more stable. So I don’t have to go into every detail, every minor detail.

He’s a good shrink, yeah. I mean, he’s always struck me as very professional, but he’s very, he asks the right questions and usually it’s pretty laid back but he just asks the proper questions and talks, and he wants to know what, how you’re doing and as Dad says, “Like I think he cares for you Paddy”. And I think that’s generally true. Like, he’s got a sense of humour too, you know. But also like, he’ll ask right, the right questions, “Are you sleeping. Are you taking medication?” But also a host of other ones and really have a conversation too and, “And how is that going and yeah, how does that”. He just seems to be pretty good.

I don’t like to be treated with, I just like to be treated with a bit of empathy but like I don’t like to be treated… Some staff I think they have a bit of a superiority complex about whether they have a mental health issue or they don’t. Sometimes I get a feeling of that, you know, some, like, not just in hospital but, I’ve lived in mental health outreach services and I think they just have a bit of, like, “We’re better than you” or something like that. I don’t know. But I just get that inkling. Like most people don’t. Most staff don’t, but just get that feeling. It’s not nice. So yeah, it just could be a feeling, but yeah. Could be nothing – you never know what’s behind some, human relations are a fraught thing. But I could be wrong about that.

She said, “Do you think we can put a reminder on your page on the computer, you know, as a client? If we don’t hear from you in, you know, say, a month’s time, or two months’ time, we’ll give you a ring, or give one of your family members a ring to see how you’re getting on”. I said, “Well, yes, that would be a good idea, definitely, you know, to be followed up on”. She said, “We’ll take it up. And she goes, “And we’ll, if you like, I’ll talk to [general practitioner] about it”. That’s my GP. And I said, “Well, no, that would be a very good thing for me, you know, because if I don’t come for a long time, that means that I’m not on my meds”. But hopefully it’s not going to happen. But it would be a good reminder to have on the computer to keep in touch with me. Just give me a call, “Are you okay”?

See, it’s like the first time when I stopped going to the psychiatrist because I couldn’t afford it. I should have had some follow-up from them to say, listen, you know, we can’t do anything for you, but I’ll ring your GP and he’ll arrange something else for you. But that never happened. I should have had some follow-up.

To me, the big part about it is being involved in the decision making. You can’t, someone else can’t come in and tell you what to do and how to do it, you’ve got to be involved. Otherwise there’s no point. You’re not going to just take someone else’s word for it. It’s my life, “What do you know”?

I think it’s vital to be involved. I think it’s, to be part of the process, otherwise you’re totally disempowered and you feel like you’re not even part of the process. You’re just, you know, you just happen to be there. And, why would you bother if you’re not part of the process? I mean, I think you’ve got to be, there’s got to be an authentic sense of collaboration because that’s the only way you can feel empowered enough to act on your own behalf. Otherwise you tend to be a bit disenfranchised and disconnected and probably disengage off totally.

I’ve certainly questioned the high handed approach and, again, I felt that no matter what I said it just seemed to add more weight to their decision that I was a drug seeker. You know, look, I even, like I asked, you know, “Isn’t this supposed to be a collaborative process? Aren’t we supposed to, isn’t there supposed to be an element of choice”? They said, “Look we’re not going to do what you want to do, we’re going to do what we think is right for you. You might not want to do that. So this is the option, you know, you can leave our service and not follow the advice but if you’re going to stay here, we would like you to follow that advice”.

So I found that quite threatening. I want to be involved. I want to feel like I’m supported and that I’m having an element of choice otherwise I feel like I don’t have any control over what’s happened to me. It’s my body and I want to feel in control of my body.

I don’t really, I don’t really give a shit what the label is. Sorry, that’s not very politically correct but I don’t really care. As long as I can manage to maintain a happy, healthy life, I don’t really mind what label they want to slap on me next. But the only thing that I’ve found weird about it is when I did get the diagnosis of bipolar, my psychiatrist just blurted it out as if it was something I’d already known so, and that’s happened a couple of times when they’ve changed my label. They’ve just sort of blurted it out and it’s like “Oh, so that’s what I am now is it?” “Oh, oh yeah, sorry”. So there’s always been a little bit of insensitivity around that.

And it doesn’t matter which labels it’s been. There’s always been a bit of insensitivity around the point of addressing the new label, so that’s something that I think medical practitioners in general need to develop their skills around, is the fact that it could be quite distressing for some people to just be told all of a sudden that they’re, you know, bipolar or schizoaffective or whatever it might be. I think that there needs to be a little more delicacy around that and a bit more information sharing, because I’ve had to come home and Google my diagnoses each time it’s changed. I haven’t been given, you know, any information on it or a fact sheet or not even any verbal information.

It’s just been one of those things of, “Right, okay, you are this now, off you go”. So I think that’s something that needs to be handled a little bit more delicately. Having said that, I think my psychiatrist is great. I’ve got a really good relationship with him. I’m not bagging him out. I just think that that’s probably, I’ve heard from a few other people that I’ve been through hospital with that they’ve had a similar experience. I think that’s just standard practice and I don’t think that that’s necessarily good enough, so I’d like to see some change there.

I think what would have been really important would be to have known on what basis they were making a decision that I needed to be involuntary on. So initially I should have been told straight away what it was that made me need to be in hospital rather than treated in my apartment. So that I could give them facts.

And, I guess, to not discredit the ill person and prioritise information from people that don’t necessarily know what’s going on. To check what the relationship really is. Like, when was the last time they saw that person, and how often do they normally see the person? Not just that you’re their dad or that you’re her friend from uni. I mean, you know, a lot of the people that were making these reports were just doing it off, without any real contact with me in the preceding months before I became unwell.

Listening and respecting, listening to me and respecting my wishes in regards to not communicating with certain people that I didn’t want to be part of my treatment. That was really important. Telling me when they had concerns. Like, I think that, I guess that’s the real thing, that not just health professionals, but everyone round a mentally ill person needs to understand, and I can’t understand why it’s so difficult, is straight talk.

To someone who’s unwell, it’s so important to do straight talk, to not hide or obscure or try and soften or use language that’s, you know, weak when you’re saying to someone, “Look, we think you’re really unwell and that you’re incapable of keeping yourself safe in the community right now”. Or, “We’re finding your behaviour when you’re doing this to be very concerning and we think it’s indicative of this”. So that you know what the judgments are and what they’re based on and that. You might have an opportunity to say, “Well, hang on, you think that that’s really odd, but can I explain why I’m doing that, because there’s actually a reason”. Or, “Okay, that is odd behaviour. I should try and make sure I don’t do that odd behaviour”.

Straight talking. Even if, like you do for children, even though they might not get half of the words you’re saying, just say it straight, and then you don’t have to worry that it’s been misconstrued. Eventually I think it builds up trust between you and whoever’s talking that they’re going to give it to you straight. It’s like being in a war zone. You’re alert and you’re alarmed. You don’t need flowery descriptions of what’s going on. You need directions and, you know, basically it’s like a permanent emergency situation. You just want clear directions and only the most essential communications.

There’s no, you’re not handed any information when you leave hospital. And, another thing which doesn’t relate to service providers, but with schizophrenia they have a very high depression rate when you leave hospital. So there should be a brochure warning family members and a person that if they do develop signs of depression that you know there is, you know go back to the, go and see your psychiatrist, or your GP even, and tell them that you’re getting the depression.

Because unfortunately I lost a friend to suicide, who committed it just after his release from the psychiatric hospital and personally when I also came out of the psychiatric hospital I developed depression too. So…

Yeah, honestly there should be a brochure warning anyone who leaves a psychiatric ward that if they develop any, you know, symptoms of depression that they should go and see someone.

I think that a mental health practitioner also needs to be humble enough to say, “Well we can’t, I can’t help everybody. And my style might not be the best style to help this person”, and I think you know if they can see that quickly. If they can be self-aware enough of themselves and see that quickly and refer the person on to somebody else. I think that’s a very big positive. I think that that’s human nature. I don’t think that’s a reflection that they didn’t study hard enough or anything like that. I think that you know, different people will suit at different times.

I think they need to be open enough to recognise their own flaws, which I think a majority of them will say that they do that. Because obviously they have to get to that level and I think from memory they have to have their own therapy to get there. But so one of the ones is listening, listening skills would be huge – empathy, listening, empathy, relatability. So I guess, you know, to open up that therapeutic relationship. And look, you know, I’m also humble enough to admit this could be my experience.

Like, so I’m sure some people have some very positive experiences with them, but the level of openness I think that they need, in that you know, that their own model isn’t necessarily what works for everybody. And to give that empowerment back to the patient, provided it’s not what, you know, to the detriment of one’s self, provided it’s not to the detriment of another. You know, if somebody chooses to kind of lose their marbles, you know, all right fine. If they’re going to be a burden on the system so to speak, then maybe we could step in.

But, you know, I don’t know, see to me that’s a catch 22. I don’t know, I sort of sit there and think you know, we’re not going to prevent every suicide in the world. So at what point do we sort of say well, “That’s a person’s choice, do we try to save them?” Yeah, I don’t know, I guess that’s a fairly blurred line at the moment for me. I just don’t think we need to be prescribing drugs to everybody that we feel has you know a self-harm thought. Because it could be just testament to what’s going on in their lives, it doesn’t mean they’re going to flow through with it.

But, I think this is where the medical world and our education to-date is, where everyone is still learning because it seems like we’re down this path of overspecialisation and everyone has got their specialisation – so I’ll have a look at your heart and how well it’s pumping and if there is anything wrong there. But we won’t know anything else around that, and, for example, well, it could be anxiety. Der, hello? And I can’t be the first person in Australia that’s gone for a heart scan and the fact that it was just looked at from a physical perspective.

And, I think, in a lot of ways a lot of the way we analyse if there’s something wrong with you physically, you know, you get your bloods checked and you get this test and that test but where it’s kind of mental it’s just sort of well, “I can’t see it. Why would there be anything wrong with that?”

And maybe it goes onto the perspective, this particular physician may not have even had any experience with anxiety or mental illness, but it just fascinates me because it was quite an expensive test. And to not even, it’s a bit of myself responsibility as well to say, “Well okay, well my heart is not right, maybe I should go back”. But yeah, I wasn’t even given a leaflet from beyondblue or from anything else, you know, to say, “Well, yeah, there could be something more”.

So a bizarre experience and so every time I talk about that now I kind of share that so people with other heart experiences can understand that we’re such complex beings and we’re not just one dimensional, there’s multi dimensions and, yeah. So after that I guess I just ignored it because I tried to seek help at that point in time and I just put it to one side. And I still wasn’t sleeping well and things weren’t kind of resolving.

I still think and I do believe very strongly in that the whole education for people in the clinical side needs to totally change. Because even though one reads that, you know, things have come a long way in psychiatry in the last 70 years for example, it’s my experience that really the whole attitude towards people hasn’t changed. I mean I wasn’t around 70 years ago, but from what I’ve read and the comparisons that I draw, there hasn’t been much of a shift.

And you’ve got very much medical model versus the a more holistic sort of person-centred approach. And that can be rather confusing too, and rather frustrating. And that’s what I’ve found frustrating, I wish the community organisations would actually be the ones who determine my treatment rather than the psychiatrists. And even the nurses. There have been a few exceptions amongst nursing staff, but a lot of them I have found have been terribly judgemental in a very negative way and haven’t seen me as a person. And that’s the other thing too. I mean I sometimes wonder why they’re in that field when half the time they stand in the nurses station talking amongst themselves, what they’ve done for the week. And then they say, if I want to go and talk to them, it’s like, “Oh sorry, we’re busy”.

So yes, the training, the education, needs to change in this whole area, in the medical area, because it shouldn’t be a case where there are exceptions to the rule. It should be the other way around.