Interview with Bill Campos - Chief Executive Officer of ICLA and Clinical Psychologist who shares his story of having a parent with Bipolar for the first time!

October 09, 2022

Interview with Bill Campos - Chief Executive Officer of ICLA and Clinical Psychologist who shares his story of having a parent with Bipolar for the first time!
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This is one of the most important episodes I have recorded!
If you have a parent with a severe mental illness or know someone who does, they need to hear this episode which is all about this topic.

Bill Campos is Chief Executive Officer of ICLA | Clinical Psychologist BSc MA (Psych) MPsych FAPsS | Director | Social Researcher.

Bill also has a mother with Bipolar Disorder, and for the very first time, I was privileged enough for Bill to feel comfortable enough with me to share his story about this.

Bill's openness and bravery to share these very personal stories of what it's like to grow up with someone you love who has Bipolar disorder is extremely powerful.

The great thing about this interview is that Bill works in this space now as well, so he can see both sides of the issue and speak from authority with both points of view.

Big thanks to Bill for his time, and you can learn more about ICLA at https://icla.org.au/


Introduction to Bill Campus.
0:00

Growing up in a family with mental health issues.
2:11

What does bipolar disorder mean to you?
8:45

How bipolar affects the whole family unit.
13:19

The ripple effect of the episode on his life.
16:27

The story of a customer that constantly came into the branch and became agitated.
22:20

Bill’s advice for those who have a parent with schizophrenia.
28:26

What can be done to help people with mental illness in Victoria?
32:19

How should mental illness be explained to young people?
38:20

Do you think it’s helpful or harmful for young people to see their parents in the hospital?
42:30

The emergency services are really good.
48:48

What’s your opinion on electroconvulsive therapy (ECT)?
55:28

Treatments that are experimental.
59:08

How did you stay on the straight and narrow growing up?
1:03:43

Throw yourself into something you’re passionate about and do a lot.
1:09:45

The value of disability workers in the workplace.
1:16:04

Mental health awareness is great, but all people think about is depression.
1:18:26

The importance of having a supportive family.
1:23:48

What is the biggest gap in mental health?
1:29:12

What’s your opinion on sharing your story?
1:34:27

What needs to happen in the mental health industry.
1:39:19

The importance of having a consumer advocate for mental illness.
1:43:06

The stigma of therapy in the US vs Australia.
1:48:23

How social media can affect young people’s lives.
1:52:25

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Transcript

Joel Kleber:

Welcome to the lived experience podcast. I'm your host, Joel Kleber. And if you've got a parent or know someone who's got a serious mental illness, and you grew up with them especially or you support them in any way, this is a great episode to listen to today. Now, Bill had a mother with bipolar disorder. But he's also the CEO of independent living in Australia, and also a clinical psychologist. So he's worked in this area for many, many decades. And he shares today on this interview, what's an all what was it like growing up with a mother who had bipolar disorder, and everything that comes with that, you shared a lot of really good personal stories, which illustrate just the hardships and trouble that the children and young people and families go through when they're supporting someone with some serious mental illness. And a big thanks to bill for doing that. Because I know it can be very hard for anyone to be vulnerable. And for him to do that for two hours, especially sharing what he did, I really do appreciate that. And I've got a lot of respect for people who have the courage to do that. And we need more people like Bill to do that. But the great thing about Bill is that he works in the field as well. So as a clinical psychologist, and the CEO of Independent Living Australia, which I'll let him talk more about in the episode, the episode goes for two hours. And I thought it was important to go for that long, because Bill shares a lot of great details about his stories, but he's also really good speaker. So if someone's a really good speaker, you let them talk, because the more they talk, the more they give, the more value you get. So if you do like the episode, please make sure you leave a review. If you want to come on the podcast as well, please check the show notes and also for Bill with CEO, the CEO of The Independent Living Australia to see where he does, check the show notes to see it all there. And I really do hope you enjoy the episode. And once again, thanks to bill for his vulnerability and courage for sharing his story on the lived experience. The Joining me today is Bill campus who is the CEO of Independent Living Australia, he also a registered clinical psychologist plus a host of many other qualifications that you're that you're saving yourself. But most importantly for me and for my listeners is that you are also a child of a parent who had a serious mental illness. And we want to just talk about your story today. And, and obviously working in the field as well, you've got a really good expert opinion where you've not only lived through it, but now you're helping other people or you see it from a qualified perspective as well. So thanks for joining me today, Bill, and you want to start off with a little bit about yourself.

Bill Campos:

Yeah, sure. Thanks, Joe. As you rightly pointed out, I grew up in a family where my mother who was the one that had quite significant mental health concerns or mental health illness, I think probably is important to highlight my growing up was a little bit unusual because I also migrated from Brazil to Australia when I was 1011 years old. And so there was a, I suppose a different perspective, I guess, of you know, how a kid grows up with a parent with a mental illness. So the important thing that I obviously got involved with you guys is is the understanding, in my perspective anyway, that there's a lot of talk at the moment about mental health. But there's still that element that still not talked about a lot, which is a mental illness part of them to health, then a lot of people still experience a significant part of mental illness. And when I grew up, back, this is back back in the 80s. Really, there was no discussion at all about either mental health or mental illness. And that was something that was very, very little spoken about because of just the nature of where we were as as a society, I guess, me growing up as a kid, I think it's not until you become an adult and you start to realize the I suppose the differences in your upbringing to other people. It's not until you look back in your respect perspective to say, Okay, well, other things that I experienced as a child has a very different experiences than probably a lot of other people have. And I guess one of the things that I felt was really important for me was that when I lived in Brazil, where as a young boy, we were part of a very large family. And the reason I thought it was really important highlight this is because back then in Brazil, there was not much a awareness of mental health at all. And two, there was not much health support in some ways in terms of hospitals. And so a lot of the support that my family received is through our wider family. And so when my mum was unwell when to when I was younger, you would had cousins who had family aunties, my grandmother would often come over and stay with us. And as a kid, you didn't think anything other than, you know, just family come around and supporting us. But knowing the background now and perspective is that, you know, they knew that there was something happening with my mom, and then my mom needed support and my dad also needed support. So there was that kind of really, I call it like a family envelope that was able to absorb a lot of the stresses that comes with living someone with mental illness. Then, obviously coming to Australia for various reasons, but I think probably the most important one was the financial implications. And my dad been in an engineer was able to get a working visa into Australia, which is an opportunity, I think that a lot of people in Brazil sometimes seeks. So we were fortunate enough to actually secure a place to migrate to Australia. This, again, is back in 1980 1981. And then, we were extremely isolated. So with my family with just my mum, my dad, and my brother and I. And again, we're still reasonably young as where we migrated to Australia. So we're still able to absorb. And even though it was kind of scary, leaving a lot of your family, there was an element of excitement coming to a new country and learning English, which is something that my brother and I and my mother had to do, my dad had a little bit of broken English. But it was then we started to notice, particularly my brother, and I started to notice that there's things about my mum that, you know, you would question now that we're just kind of accepted as a kid. But we knew that was probably not what every other mother does. And I remember things like, in the perspective that when I was growing up is that sometimes my mom will come home from work on Friday afternoon. And literally, she'll be in bed all day, until Monday morning, she would not get out of bed for the whole weekend, she would stay in her bedroom all day, and my brother and I and my dad would get out and do activities. And my mom would just be completely, you know, absent for the whole weekend, I just remember to not get out of a pajamas for the whole weekend. Other things that we then obviously other later on my mom experience some episodes too. So there were times when, you know,

Unknown:

my mum just become quite, quite delusional, at times. And when you're a younger kid, like when you're in 1011 12 years old, some of the things that my mum would tell us, for us as kids does seem plausible, you know, so we wouldn't know better. I mean, I think I remember this quite clearly that my mum would be quite paranoid about people coming to the house or curtains and things in the air as kids, we just thought that there was a plausible thing that we shouldn't trust people come into the house, and we close the curtains in case someone was watching. And that's something we grew up. But now, in that context, we kind of understand that that's kind of a little bit of my mom's delusions that was happening. And that times things got really out of hand because she became quite manic at times with those delusions as well. So yeah, so growing up, there was there was a lot of stress testing times. And I know Joel, you and I spoke about because we share some similar experiences, I guess. But I guess the point of difference for me was my dad, my dad has been such an enormous strength. And he was always very, very supportive, and in some ways, absorbed a lot of the tension that sometimes happens when my mum was unwell at times that kind of isolated my brother and I, and a couple of things that I think looking back, what my dad did, that was exceptionally helpful was that he just helped my brother night to be heavily involved with sports and activities. So we're constantly going to school and then playing sport and afternoons, you know, Scout bike riding. And that was a looking back at it. Now, it was a great mechanism to to kind of absorb some of the tensions that happens when my mom goes through these cycles. So I have to say, My dad has been an enormous part of my life and how we actually be managed to some very difficult times. Yeah, please feel free to ask quick questions, James. Otherwise, I just keep talking and talking.

Joel Kleber:

I'm not in my head. And it looks like I'm smiling. I completely agree with everything you said. And I reckon we had a very similar experience growing up. And I think the, what you said was, I haven't really discussed with him before, but you said stuff about your parents tell you one thing, and you do believe it as a young person. So you might be 1011 or 12. Or, for me, and you had that and it can be really, after a while you sort of learn maybe a bit of critical thinking as you get a bit older, but there is a time where you just believe what your parents says. And in my situation, my mom used to say your dad's coming to kidnap you from Turkey to Saudi Arabia. So we thought we're gonna get kidnapped all the time, right? It's my dad was working in Saudi Arabia at the time, and they weren't together. And so we always go whenever anything, you know, there was legit kidnapping threat, like it was legit thing for us, right. And this was just part of it. And as you got a bit older, you sort of get to 1413 you guy, that's probably you sort of know what's going on a bit more. But that's not true. But that's something that is quite often not spoken about is when you have a parent with bipolar disorder, that it can be very scary sometimes with what you're told and, and things like that. And if you don't have that support of let's say, a parent, like we had a single mum, it can be it can be very scary until you get a bit older to learn. That's actually not the case. And you can have a lot of trauma that's impacting on you for those situations. So I want to talk to you from your perspective in regards to what is bipolar disorder mean to you or what was it? So obviously, there's a definition for it, but what was it to you? And how did it affect your mom,

Unknown:

I still struggle with a trouble with understanding both as a clinician, you know, and in my life is all different areas of mental health, I still struggle with the term bipolar, because, you know, it just means that the either people are very high or low, and it's not true. It was cyclical behaviors, and we didn't know when the cycles were, you know, so. And the other thing too, which I think it's not often spoken about, there was some wonderful times with my mum, my mum was exceptionally creative, and she had those highs that would she was, was quite intoxicating in a really pleasant way, you know, she would encourage us to be very creative, or when it was raining, she would come outside and was pouring down with rain, and she encouraged us to jump in the mud, and she'll jump on the mat with us, you know, kind of had gone mad fights. So there was a real element of also of, you know, some right times, I probably would have thought much of the other parents would have been much more reserved about their approach with doing some of these events or activities. So I think the question was bipolar, manic depressive, I still don't know, even now studying psychology for 25 years, I couldn't tell you definitively what bipolar means. But what I can tell you though, is I think there are two different types of mental at least a way of us having the need to have a conversation about describing people who have a mental illness, which are more associated with things like schizophrenia, or Schizoaffective Disorder, or bipolar or manic depression, whatever those type of mood disorders, which is currently the way they describe it. And then you have a mental health condition based on life events, like grieving or suicide, or depression or anxiety that that sometimes often experienced because of life events. And one of the things that I sometimes do talk about is, we probably do need to understand mental health in that kind of spectrum where there's that mental illness type of, or mental health condition, as a mental health experience. I use a term in describing some discussions and talks about how in, you know, in diabetes, they have a type one diabetes, which is the people who are born with insulin dependent, and they have to have that sort of things to under supporting their, their insulin. And then you have type two diabetes, which is essentially people who are experiencing diabetes and insulin because of their lifestyle. And I think that same sort of thinking probably needs to be brought into the conversation around this, this discussion around mental health and mental illness. At the moment, mental health summarize the flavor of the month where there's a lot of discussions, but it's talking about the entire spectrum. And a lot of the moment a lot of just focuses on, you know, workplace mental health or depression or helplines, or things, which I think are incidental based on support or people who are experiencing a mental health event. But they still need to, we need still need to be mindful of that the mental health and mental illness of people who have has a long term sort of detrimental effect and need to be much more aware of how we support navigate people in that spectrum, if I put it that

Joel Kleber:

way, absolutely. And it doesn't just affect the person with it affects the whole family unit, as you would know, your life is completely affected by it. 24/7, and you live with the person 24/7. So you're affected by the actions, if they're manic, or if they're depressed, it directly affects you as a child, and you've got to live with that for 18 years or until when you leave home. Right? This is what people don't understand. So in regards to the current discussions, I completely agree with what you're saying there is mental health awareness, left, right and center and workplace where everyone's posting about, you know, we're doing this and mental health and that's great. But as you and I know, we never hear about bipolar spoken about in discussion, we never hear about young carers, whenever you hear about, you know, schizophrenia, mentioned in the same sort of, let's say, awareness channels, or people are publicizing it as much, even though affects like 2% of the population, let's say in relation to bipolar, but in regards to who would actually affect that side of the people that condition, it's a lot more because you've gotten one person with it. And then you might have your whole family unit of let's say, 20 or 30, people who are directly involved with that person who are affected by it. So it affects a lot more people than what people realize. But it's not, let's say marketed or even advertised in the same sort of discussion that it's getting all the mainstream attention at the moment,

Unknown:

you're spot on spot on. I mean, I think one of the things that could highlight here is to experiences that one of the personal experience, which I think will give some insight, like when I was 15 or 16 years old, and I'll share this experience and it is very personal. So but I think it's important to highlight a little bit about how that ripple effect happens. So I remember being at home one day and studying for some sort of tests and exam and my brother and my dad had to go somewhere. So as literally are lying by myself at home, and I'm this is one of those times where my mom was unwell and she was at home sleeping. And I didn't know anything better other than I just didn't stay in my room and studying ready for a test. Anyway, to cut a long story short, I heard these enormous screams and banging and people cream outside out the front of the house about three, four houses down, and I didn't think anything of it, you know, I just didn't think anything of it. And I remember it started getting quiet people yelling in it was some banging. And I went out the front door. And suddenly I realized there's my mom, you know, my mom was out there banging in the front door at the neighbor, she's screaming her head off, she was partly dressed or half half of and the neighbors were kind of fighting and trying to push her into it. And I just feel completely alone. And I just remember the first thing that the neighbors told me said call an ambulance call on it. And this is the day before mobile phones have to run back home rang and as a kid, 15 years old, the ring. And it took 1520 My mum was completely irrational. She was she felt, you know, she was screaming kicking, she was yelling abuse at everyone. It's probably one of the first time that I saw an enormous implication to her condition to the whole element. We did call an ambulance, the ambulance came pretty much almost straightaway that kind of secured her and my mum was fighting with these these ambulance, they had restrained her put her. And all I remember was two things. One is my mum was trying to refuse to have any medication. So and then the medics were needing to actually give us some injections. And so they've asked me to hold my mom's hand while she'd do it. And my mum was screaming, shouting and so forth. But I do recall, two things that were really, really important about that experience for me anyway was, and it is very personal. But I do remember clearly looking at my mom, and trying to rationalize and talk to her. And I remember her, you know, looking back at me like as if I was a complete stranger, you know, and that was really a, that's when he started realizing this is reality to mental illness that really impacts you know, sort of like that personal level. Now, the reason I'm telling the story is that eventually she went to the hospital. Again, these are the days before mobile phones. Three hours later, my dad showed up at the hospital after nightmares told them what happened. In the hospital, nurses came in and took me to a seat, they took my mom to an examination room. And I remember my mom still being fired. And that's the other thing I recall quite clearly is how strong my mother is. Remember, there was a security guard there. And she was wrestling with a security guard and much bigger than her and she was like she was an incredible hulk, she was pushing the there is a funny side, you have to kind of look at the funny side of some of the experiences. Now that the reason the ripple effect happened afterwards, my mom was in hospital, I think for about three or four weeks, you obviously didn't return home. But the issue that everyone on the street knew that my mum had an illness, and that I had to go to school with some of these kids down the road. And there was a complete embarrassment as well about that, that took months and months and months. And there were some neighbors that were incredibly supportive, but on the other side to do some other neighbors that were completely very critical and very supportive, I guess, in some ways, and then you live to that. So we live in exile, but for probably five, six years and the dynamic of that episode. You know, we live through it for right through to Middle High School. Yeah, so kids knew, you know, and we, my brother and I were reluctant to invite people over to our house, we were very cautious about how we do this. And my mom went through another episode A few years later, as well. So but we'll probably catch a little bit earlier than we did. And because some neighbors were supportive, they were there was always an element of checking in, which is very helpful. So I think going back to your point, which is that's the ripple effect. You know, my school, my friends, pretty much we had a small, quiet street, but you know, 20 or 30, neighbors kind of knew. And, you know, and the whole dynamics of how we interacted with a family, it also became quite different after that episode.

Joel Kleber:

Well, it's a huge burden on burden on kids. And this is the thing, you know, we we forget, we always say, oh, you know, children are the priority and stuff, but they're not in these situations or less from my experience. And from your experience, I would presume you weren't the priority or there was not much consideration that would have been given to you at the time.

Unknown:

No, it wasn't in full for whatever reason, I think partly is because people still didn't understand mental illness or they didn't it's a bit of a taboo subject. You know, this we're going back in probably mid late 80s. And, and you're right, you know, all these sorts of discussions and usually would happen at a family you know, and my poor dad was the one They probably had the burden of sitting down and explaining how human throw we has a condition that no more than other people have. But yeah, it wasn't. And I do remember quite clearly sitting at this hospital, this is going back a long time ago in Sydney for three or four hours waiting, what happened. And I had probably two very brief interaction with the nurse. First of all, you know, telling me to sit down the seat here while my mom goes into this examination room, which I had visibility to, because I can see her thrashing about. But also, probably an hour or two later, after she was obviously, you know, calm down, they came back to say whether I was hungry, where they wanted any food, because there's something like two or three o'clock in the afternoon, and a lovely nurse did gave me a sandwich or something. And I didn't know I said to them, I need to contact my dad. And we've contacted I get phone numbers, and then my dad showed up three hours later. So I did not know anything about what's happening Mom, this is probably the first time that was really my face, because I'm assuming it was a point where was quiet. It's quite severe and acute from my mum. And that was when was really hit home about the her condition. Yeah, but I do want to share another story too, which I think gives a different context to because because I always have a dilemma about talking about mental illness, because there is still a bit of a stigma around mental illness where you know, the scenario of they're crazy, or they're, you know, they got some read sort of understanding or they have that could be dangerous, you know, that's still perceived a little bit, or at least, you know, people sometimes associate mental illness with those type of kind of, you know, danger, craziness type of understanding about what I've been the longest people have. And I remember this going back to Iraq, and fast forward a little few years later, I was at I was working as a bank teller, believe it or not, when I was studying at uni, and this is where the times where it was just small bank, branch tellers in local suburbs. And this is before Well, this is when you had passbooks you had the old passports that people come in, they give you a passport and and Taylor would wrap up and clean it and and get the money back. The reason I'm telling this story is because there was a customer been a suburban branch of the customer that constantly come as it comes over. And there was a particular gentleman which I'll, I can't remember his name was but let's just call him Robert for a moment. And we I saw serve you or every week or every second week, and I knew there was something different about him for two reasons. One, because it's very gregarious, very you know, sometimes you come up blue here have very different clothes is very loud. And this passbook always had a limit as to how much money you could take. So he was on some kind of arrangement where he couldn't take too much money and everything was was, you know, recorded a certain way. Anyway, I was in that branch for about a year and a half and over a year, we kind of knew that uncertain time every fortnight or every week, he would come in we sent that you know, he had some something slightly in his condition. And sometimes he would come in as a complete zombie. He would come in like as if you know, the life was sucked out of him and he just comes in hardly walking with hardly talking just kind of throw you the passport, you get the money and he walks out without saying word. Other times it'd be life of the party and becoming all dressed up. You know, sometimes wigs and manicures and hair and like as a man and you'd be dressing with a dress. And it'd be really funny, he'd be really engaging, you'd be a life of the party. But there was an incident that happened once when he came into the branch and there was a busy day and we had a queue. And this particular gentleman Robert was very agitated, we can send him like I can see the end of the queue that he was kind of twitching and kicking in mumbling to himself and he was quite, quite erratic. And as I was serving customers, he was he was getting more and more agitated. You know, like he was hitting on the poles on the sides and flicking pins. And in the front of the queue just front of him there was a lady with a daughter and she started moving the daughter around away from him. And there was a moment where he must have something happened but he literally looked at this little girl and he ran towards her grabbed her by the underneath her armpits and shook her and said what the hell even said all these profanities in it, she was probably eight or nine years old. You know and really frightened and then there was whole lot of screams and people came in people tried to tackle the In security guard tackle him. And he was yelling like also like Satan and devils and things like that. There was a whole kerfuffle. Obviously there was there, the mother was completely distressed, the poor girl was, you know, absolutely traumatized by it all. They grabbed the guy that took him out, we had a police statement comes in the mother was wanting to make sure that there was, you know, some repercussions about the actions and charges were laid. And obviously, we didn't hear from Robert forever, I didn't see him after that interview. And that's story for me captures pretty much a lot of the things that I have in terms of understanding mental illness. Because when he grabbed that girl, in ARM apparent now, if someone did that, to my little girl, complete rage, and protection would come over to me, and I don't care whether someone has whatever reason they did, if they completely came in and grabbed my girl like that did, I will be completely furious. And I will do absolutely everything to protect my family, you know, can take them rational steps. So in that moment, you can you can rationalize and understand completely the actions of both the mother and the daughter and the police. And, you know how how something like this could happen traumatic. But the flip side of this also was, I felt a little bit sorry for Robert as well. Because in his head, he must have been struggling with so many demons on that day, that he must have been completely irrational that he probably hadn't had any idea or intent of doing something like that. But he was struggling with so many sort of, you know, I call it demons. But you know, it could be all sorts of things, but it living, just the way I understood the things that might be going through his head. You kind of feel sorry for him, can you imagine what what might be like, leaving with so many emotions, anger, frustrations and voices, and to the point where you can't even control your unconscious. And so that's, that's why I told that story. Because I think, you know, sometimes people often talk about mental illness as in people being very dangerous. And in the, in some extent, that's true, too. But you know, that person living with an illness, you know, you don't know what's going through their head, what kind of anguish they're going through, and what kind of torment they're experiencing. And even though some of those torment might actually be completely delusional or unrealistic. For them, it's quite to the point where it's so real, that they actually have to act on it. And so, you know, and I juggle that sort of scenario with my mother as well, because often times I keep thinking with my mom, you know, Mom, why can't you just be normal? Why can't you just rationalize, it just thinks in your head, you know, you kind of think that way. But then at times, you're thinking, Oh, my God, if you had all those voices in your head, and you had a complete delusion, that something was imminently going to attack you and threaten you, or your kids or your family. And you act on it, even though other people see that as being unrealistic. But for them, it's it's life threatening. And so yeah, that's, that's, to me captures an element of the dilemma associated with mental illness. Because then we need to also understand that when people live with a mental illness, it's not by choice, that they have this condition. And sometimes they're at a position where they can't control it. They can't

Joel Kleber:

help it exactly right. You know, I started big, thanks for sharing all those stories. And hopefully, a lot of people take that and I'm sure if there's anyone listening who has a parent, or how to parent the minimalist, they'll be shaking their head in ignoring like I am in regards to the, especially the stories I'm sure we can all relate. But regardless, regardless, I think that having that foresight, when you're young is very hard, because you dislike why can't they be normal, like my mates over there, it's got a normal mum and dad and their work and, and all that sort of stuff. Now as household, then I've got like, another normal parent, it's really frustrating. And it's, you know, takes a certain level maturity to deal with that. But also, you're right, they can't help it. And that's the thing I didn't learn to a lot later on in life. And, you know, I, unfortunately, have much empathy growing up for my mom, because she didn't manage her condition well, so you didn't take her medications and stuff like that. So I had a lot of not as much sympathy or empathy with the condition, but you're right. They can't help it, you know, and even they might want to take their medication, for whatever reason, they might be on better now, or I don't think I need to, and I can't help that as well. So you just got to, you've just got to go that and have that sense of empathy and understanding so that when you you just don't get the frustration and anger which I presume a lot of young people would still probably struggle if they're in our situations now. Bill.

Unknown:

Yeah. Spot on.

Joel Kleber:

And what you made. Did your mum ever go when she was in hospital? Did you have to go in and see her email those facilities as a young person? And how was that? Yeah.

Unknown:

Yeah, we did. We did. And they also were very close family because obviously there's only four of us. So you know, from mid teens or late teens, I was quite heavily involved soon as a side driving hours expected to drive my mum to appointments and psychiatry. And so, so that was, you know, got much more involved a little bit in the care of my mum in terms of how she manages these, these situations. And they were, I mean, I can share some things that probably going to get me into trouble. But if work has been a collision center, you often also question how much little they tell the family. So I drive to drive my mom to the psychiatrist. And, you know, we, we kind of sense that she's still quite unwell. But I used to find this really frustrating is that, you know, it takes six, eight weeks to get an appointment, you know, and we have to kind of manage my mom with these delusions, and you know, sometimes days will be good, some days will be horrible. And then I'll drive it to this appointment. And, you know, we experiencing things like my mom thinks it's, it's a camera on the kind of like smoke alarm, and she's quite delusional. And she rationalizes things, and we've got 45 minutes and my mum within that 45 minutes in talks like as if there's nothing wrong, and almost to the point where the psychiatrist thinks here, the family is something. And I struggled with that, because I kept thinking, you know, we're really asking for help, and you're talking and you're focusing on my mom and your time that she's will. But yet, you know, we're experiencing these sorts of things at home. And, and there's this dynamic of, well, she's the one in treatment, if my mom wants to keep something confidential, the psychiatrist asked me to step out, and I will talk and I would come in at the teller and my mom would, would know this, you would know that you wouldn't want the psychiatrist to share anything, and that's a kind of client privilege thing that they have. And so I believe that psychiatry, you know, meeting with really understanding of what we could do to support her, to be honest with you, sometimes let's leave those meetings, much more frustrated, and much more isolated. Because, you know, the subconscious is very much focusing on her. And there's some steps that he's helping her with. But we're not previewed to as a family, we're home. And that really frustrated me about about the the kind of services that we provide, there needs to be a little bit more understanding about the person and that family system, rather than just the person I spot

Joel Kleber:

on billing, I've got to understand as well, we don't want our parent committed, right? We're not saying this stuff, because we want them to be committed, What benefit do we get to have, it's your mom or your parent, your dad, you love them. You don't want them committed, but you want them to be safe. And what people don't realize is, there's a time before they get really full blind blown, like, you know, mannequins, there's a time like three to four weeks, so this was my mom anyway. But you couldn't do anything like you call your you couldn't call the police or the psychologist and say, Hey, as a 12 year old as a 14 year old river that she's getting unwell come and get or whatever she had to go voluntary, right? If they didn't want to go voluntary, so they've got to get to the involuntary stage, and then you've got to get the emergency services involved, and then away you go. So there's a massive gap where it's still for me there, I haven't seen any solution attempted, from any, from from the government in any way to fill that gap, of let's say that three to four weeks or that period, where they're getting unwell, there's that sort of period. So from your perspective, as you work in the area, what can be done in that three to four week period or that period before is getting a lot less? At the moment?

Unknown:

I think it's starting to happen. But it's still a long way. Because I think the way the system works, and we are talking about a health system is designed, it's very much based on hospitals and GPS. You know, it's those two extremes. So you either have hospital base, and in order for the hospital, you need to be at acute or crisis level in order to be rushed to hospital. And maintenance is usually conducted at a GP level. And unless you have a really good connected and long term GP, you often go to a local GP practice with four or five different people coming in and you just see an episode of care, call up an episode like you're going to see one GP you get prescription and go. And you know, it's unlikely at times where you might go back and get the same GP and these medical practices. I think there are a couple of things that are happening at the moment. There are a couple of things in Victoria, the call prevention and recovery centers, which is something that I'm really fond of, were you to step up or step down. So it's a 30 day sort of home environment in a community where people could be if they are understood, and they're aware of the mental illness, whether they can be again, voluntary, but they could actually be referred to what we call a step up, step down before other go in hospital or if they're in hospital, they step down into a process where they can then transition back to home and engage with, you know, employment or family and other resources as well. So I do think, I mean, I'm probably pushing that because my my organization is also trying to create more of these services. But um, but I think that's one step towards that, particularly with mental illness where people can actually have a space in the community like a home with very qualified social workers and peer workers, where they can have that kind of step up or step down process. And you often need when people have a mental illness, just moving away from home is also sort of difficult, but also quite therapeutic, because it gives chance people to have a different perspective and not be stuck in their daily routine, or, you know, the kind of day to day sort of pressures that people can get. So that I think can be Korea, they got one of these park services, I think, in New South Wales, we're trying to open up more than as we speak. But I think that's one step that and he does a face to face service, because that's the other thing too, I think the government has pushed a lot of money into the online space, particularly over COVID, which is understandable. But you need to have an ability to go to a place where there's a familiar face and continuity of care and dollar, I'm sure, I mean, for me, the hardest thing about, you know, supporting someone with mental illness, is that you really do need to understand and know them a little bit well, to know how their moods fluctuate and how they might be, you know, you need to have that kind of, I call it continuity of care, or at least an ability to know how they are in different parts of the journey. So that when they do show up for help, you already have an understanding of where they might be high or low, or, you know, they kind of sequences of of what they need in terms of support. You know, any and there are so there are some great GPS, there are some fantastic psychiatrists, but they're very little, there's not enough for them, and you to develop that relationship with them, which takes long, long time long.

Joel Kleber:

So what advice do you have for a young person or someone, let's say even an adult or a young adult who has a parent with bipolar or some serious mental health concern, when there is that period, that they're starting to get unwell? What can I actually do because at the moment, it's generally they don't want to go voluntary, the person it's literally get to the end of the rope, and then the police are coming around or the analyst is coming around, then you enter the hospital, then you're gonna get admitted, but um, what can be actually done?

Unknown:

It's a scary step, because the younger the child that obviously it's much more difficult for people to believe them. But my suggestion would be, I mean, this is something that I did took steps on our 16th when the first episode happened, I went to my GP, I literally felt not only for understanding what's happening my mum for so for myself, and the GP, the GP that we had, we have seen him a number of times, and we kind of knew different reasons, but the GP was great, because not only was he able to then ring my dad and talk to my mom and ask my mom to come in for an appointment, which would you lose a lovely GP, he also recommended for me to see a psychologist at the time when I was 18, you know, psychologists and right. And I have to say the psychologist, so wasn't very helpful, but but the GP was because he alluded to me and he said, You know what, you might need to talk to someone outside of your family just to give some space and get a perspective that, you know, outside of that. So there are few and far between, but my advice to a 15 or 16 year old, invest in, in, in, in getting care. And and the other thing too is it's a bit of a trial and error until you find that care that you feel you can trust and feel that that can be supportive. So just because you go to one GP need that like you know the stocks or you don't like the you know, the demeanor or whatever it might be, you may need to try and try and choose a GP or psychologist or whoever it might be that you think okay, you know what, I could probably talk with this person. And so you need to persevere a little bit and just give yourself some time to make sure you connect with someone that you think you know what I can talk to this person, and then

Joel Kleber:

your pain your opinions. Oh, how should it be explained to a young person because I never had an explanation going up even though we had man was treated by psychologists and psychiatrists, no one actually literally sat us down and explained to us at all, literally. So how do you think it should be explained when there's mental illness in the family? Or how should professionals or might say people close to the young kids or children or young people? How should it be actually explained to them to help them

Unknown:

as a parent, because obviously, my mom is now a grandmother. There's some great books, there's some resources that you can put like, children's books. And that's a great way of, you know, of starting a conversation and knowing that things different and I for the life of me, I can't remember the name of the books, but there is organizations that are able to give some context by depending on the age group of the child that you may actually have. And books are really good because you can tell the story and then as a parent, when you're sitting there with your child, you can actually start discussing a little bit about the stories to unfold. I did use this book with my kids, which was it's called a polar bear the blue Polar Bear. I don't know if you're familiar with that book. But we talk about the polar bear having too little, typical polar bears. And for some reason the polar bear is eating the wrong sort of fish. And he got really unwell and started getting quite erratic. And these two little polar bears were quite isolated. And so what they did was they went into place and look at the other polar bear mother across from the other part of the iceberg, I guess. And just said, Look, Mom's not well, and so that was the ability for the hurt them to get together and try and help this, this, the blue, Paula be the one that ate the wrong fish. And then what the story is about these two little polar bears, having time off with their parent, you know, the blue polar bear goes off and starts sitting on their own iceberg, why they start to get the kind of fish out of the system, and then talk through a little bit sometimes when people either on fish, they kind of get unwell quite radically, and they don't become the right person, because so instead of a white polar bear, they ate the fish became a blue polar bear. And that's how we need to understand. And so the story then told that is sometimes it's not just what you eaten fish, it's also a little bit about where you are in terms of your palate. So it gives some discussions around this, which, which I think is quite, it's a nice way to kind of invite the discussion around mental illness with children, without necessarily using stigma or loss or, you know, scaring kids into that discussion and just raising awareness. But I haven't used that book with my kids. There are other older ones too, as you know, you know, mid teens and so forth. Nowadays on the internet and podcasts like yours, it's really great, because especially teenagers now, who are everything's online, things that you promote here through this channel is really helpful. I mean, that's part of the reason I reached out to you, John, because I think what you're doing is spot on in terms of raising awareness. So yeah, and I know, also into the future, children's book is going to be very rare. So a lot of the information that will get through visa through either social media channels, or some sort of electronic media type of approach. The difficulty about it is you kind of have to refine and choose ones that are quite useful, because there's so much information out there, you know, so as a parent, or, or whoever, it's quite important to be selective and spend a bit of time and carefully choosing the kind of information that you share and discuss around.

Joel Kleber:

Yeah, great advice. I was gonna ask you a quote, I've never heard this discussed anywhere online. But we've both gone through it. So do you think it was helpful or harmful to as a young person when you had to go and see your mom in the hospital? Now I'll tell from my perspective is basically, I want to see my mom so I didn't care where the war was in the Yes, jail wherever it was, I want to see my mom. But when I look back on it now, when we'll take it in there, like she just had a CT which electroconvulsive therapy and stuff. And I was talking to her she wasn't my mom, right? So it was very hard to reconcile, we weren't explained or debriefed on what really happened. So long term, I have to look back and they go, that's actually really traumatic experience. But at the time, I didn't know because I wanted to see my mum, I didn't care. So for you, from your experience as well, going through something similar. Do you think it's advisable for young people, for children to be put into that environment? Or how should it be dealt with?

Unknown:

Yeah. I think it's up to the child, to be honest with you, I think it is, you're quite right. My experience has been that it is quite traumatic and confronting going into it. And it's not only I mean, when my mum would hospital, the very early stages in 80s, you know, the psychiatric ward and his hospitals were also really difficult places to go. You know, because it's not only my mum, there, you have a whole bunch of people who, who, obviously you don't know, and we're acting quite strangely. And so it is quite a confronting experience. But my rule of thumb would be that I really wanted to see my mum, you know, I just just the fact that you see her and she's alive and she's even though she might have been quite I remember this was she was quite zombie, she would just literally like a zombie. But the fact that held her hand, and she looked at you and she made me say how to dog or, you know, did Jonathan, your child play soccer or something, you know, those type of things. It reassures me a little bit that that the person that I know is still there, and she's getting better. You know, and there's so I think the rule of thumb would be if a child really wants to see that they could probably use important because it's that family connection, but it is confronting, and I think that's one of the things that the realities of that kind of scenario is that you kind of hit home that you know, your mom is unwell and need help and the process of getting help is quite, quite difficult. So the flip side of that is it's kind of immature yourself as a child very quickly. Life is not all kinds of games and funds and every wonderful weekends. You know, sometimes you go and see him I'm in hospital on the weekends and you realize geez, can't wait for me

Joel Kleber:

to get out. That's right. Yeah. And that's called the moment of awareness right so there's something waiting shoulder but you're probably lucid enough to actually go maybe our situation is not the same as many others and you have that in the end you said you lose your childhood almost really quickly, don't

Unknown:

you? Yeah, yeah, you do. You do. You do. And the other thing too is I mean, I've been on the journey now for say 3040 years with my mum, I'm actually believe it or not, I'm her carer at the moment. But I think every time we have interaction with the health department or health systems, it is getting better. In Milan, last episode My mum had which is a few years ago, three or four years ago now. There was a wonderful paramedic because my mum was really unwell at home and she was living by herself. My father was unwell. He could live with my mum anymore. He had some physical and the paramedic because I rang mom and said, Listen, Mom, I just want to talk to someone and I was quite desperate because the neighbors were concerned about my mom as well. So we rang the ambulance and, and the paramedic was just an absolute star he stayed with number two hours are some really important questions that highlight that she's really acutely unwell, like things like, tell me a little bit about, you know, did you spend time watching TV? Or quantum things? Did you watch it? And what, what kind of shows you like, you know, and that's when my mom starts divulging little things, pieces of information. That's important things like, yeah, I was talking to this famous down on TV, and he was telling me these things. And straightaway, you can see the paramedic going AHA case, it's delusion. She thinks she's getting messages on the TV, you know, what are you doing normal day, and so he spent two or three hours. And my mum is always very reluctant to go to any sort of treatment or help. But he was able to connect with her to say come in, we'll go for a drive in the ambulance and he put my mom in the front seat, we'll drive to the hospital, we'll talk to a hospital killer he might need and the discussion came around because she was also unwell. She had a cough. And this paramedic was brilliant. Absolutely brilliant, you know, because that was what the discussion was, was around her unwell because she had a cough, got to the hospital, a wonderful nurse came over again, the paramedic brief the nurse, I sat down on the side, they went to hospital, they came into the house came in and said listen, and then they and then they were upfront with her say this and it looks like you're unwell not just with your throat, you may actually be affecting your mental perspective. Are you experiencing this? And this? My mum kind of said, Yeah, okay, now let's write it. So maybe might be worthwhile keeping you overnight for a few days to see how you're doing. And it was just a hard side. But it's even a smooth process. You know, like, if I won the clock back 1515 years ago, it was like, you know, four or five security guards holding my mom down, getting an injection, the mom yelling and screaming a whole crowd around her. It's very different. So Joe, I mean, the the one thing about the sort of things that we opening up and discussing is that it does make the system better. You know, I still I still take my hat off to people who work in psych wards. Because things like now as a family member, they're much more open to the idea that family connection is really important for some time. That's when people quite I mean, again, going back few years ago, when sometimes were quite quite violent, they don't allow you to see see people through a window where perfection. Yeah. They know that it's really important for family to come over. They know it's important to give people some freedom, when they started become on a path of recovery. They do need to actually allow people to have flexibility of making their own choices, even though they're in a psych ward. They you know, they need to go down there and go to their canteen and get a hamburger and a Coke, rather than just getting noticed that there is a lot of changes that are happening for the better.

Joel Kleber:

Yeah, absolutely. And I think the the emergency services are really, really good, you know, not the best experiences I've had with people have been generally the police or the the ambos generally hasn't been with psychologists or psychiatrists, we sort of seriously it's never, we've never really been relaxed, because when they retreat with much respect from them, but the police or the ambulance or paramedics are really, really good. And as you said, we have had similar experiences with that as well. They'll pick up on with my mom's the same thing didn't want to go but pick up on a physical ailment on a let's say football store or something, oh, we've got to go in and get your scan for the foot. And then they get them assessed. And then away you go. And the nurses do a good job. Sometimes they can be overworked to get very frustrated. And yes, I remember having a few Barney's with a few nurses back in the day. But um, yeah, it's just one of those things where it's such a encompassing experience. But as you not only that, if you move away from home, you still follows you, right? So you let you get out of that environment. But you're still as you said, your mom's care and now, I was my mom's care before she passed away. But it's not something where you can just separate yourself as an 18 year old and you go I'm done with it, which was what I tried to do for a long time. It's something where you're still involved all the time, whether it be multiple daily phone calls, or there's medical decisions or whatever. So it's something where it's a lifelong thing for For a person or for a child, if their parent has a serious mental illness, I'll talk a bit more about that full cycle with that.

Unknown:

You want me to talk a little? Yeah. I mean, sometimes we just talk about mental illness. But I have a friend of mine in my age group who care for the elderly parents who've got cancer or who have dementia, you know, so, where, where I, where I see myself now is that it's not too far different from some people in my circle of friends who are experiencing very similar, particularly dimension, I've got a friend of mine who has an elderly father who's got quite bad dementia. Sorry, I've lost the question,

Joel Kleber:

you're just gonna say, Well, maybe just was more of a comment that people don't realize, if you do have a parent with a serious mental illness, you it's a lifelong thing for you in regards to how involved you are. And it's not something you where you just can go, throw your hands up and go, I'm done with it. I've paid my dues, which I've tried to do many times in the past, but you just can't do it, if you got any sense, a sense of empathy, you can do it.

Unknown:

Exactly right. I think that's one of the key things, he, there's that tag, I feel that there's always that tag that think like, you know, I'm gonna say, like, shit, Mom, get your act together, and I had enough of this and you want to, you know, just get your act together. But then after a while you, you have to understand that, you know, she's my mom, you know, this is how she is in life, this is a condition that's beyond her control. And you know, you, you kind of know that it fits, especially in my scenario, where only four people in Australia, so we have no other family other than my brother and I, my mum and dad. So if I remove myself from my mom's life, you know, that's going to be extremely isolating, because not only that she already isolates herself, some extent, living by herself at the moment. And my brother lives into state. So the only interaction she gets with family at the moment is, I sort of, I mean, the internet has been great, because he, you know, allowed us to reconnect with our family in Brazil. So my mum does have an iPad, and she engages, which has been, you know, a Savior, to be honest with you over the last five or six years, that has been such an enormous change in her to reconnect with her, you know, sisters, and brothers and so forth. But you're right, it is. It is lifelong. The other thing too, which is hard sometimes for people to understand is that it's sporadic. Like, a colleague of mine had a parent who had cancer and you go through a treatment of the year or so and eventually the, you know, the cancer free for a while until they go through another versus res, you know, sometimes my mom would have a, an episode, and things will be right for two or three years. And then she'll have one episode six months, another one should have another one, you know, six months after that, or three months after that. And there's no way of us, you know, pre purchasing that so, so that always keeps you on your toe that it's not something we can just let go and she's better now great unwind, and she's going to be fine for the next three years. Because, you know, there's an element that could be just around the corner. And again, it's not too dissimilar, for example, cancer, because you might have cash in your vital cancer. And then six months later, you find out it comes back again, but they're there with a mental illness. Yeah, I think in one of the things that I struggle with particularly has been a kind of, you know, in the health system, or some extent as a condition is that with, you know, other diabetes, or cancer or Alzheimer's or some other kind of tests, there is some kind of way of verifying that the person has a clear cut illness, like with diabetes or cancer, you can do a biopsy, or can do some blood tests. And you can say, with mental health is still not that ability to actually, you know, say yep, you have a mental illness and no, you don't have to illness. You know, we have indicators and it's still a blunt instrument in terms of understanding psychiatry psychology, about understanding mental illness, because we have what we call indicators, you could say things like a person who might have trauma, drugs and alcohol, isolation, you know, genetic predisposition to this and all those four things make indicate that that person may have an illness and because they presented to the hospital at one stage, they might have a mental illness. But it's it's hard because the I call it the kind of sunburn effect because it's like saying, particularly with trauma, you know, we tell ourselves that we need to slip slop slap because you might get melanoma but, but just because you get sunburned doesn't necessarily mean you're gonna get melanoma, if that makes sense. You know, you go out you expose yourself. Some people get locked, locked sunburn quite a lot of times, but they never get the middle name. And same with sort of mental health. You know, we've talked about how this might be traumatic and this might be something that happened in their lives or this might have been an overdose or overuse of drugs. That might have been the tipping point. But it never is. You can never tell the affinity that that's what's going to lead to them being identified as having a mental illness. And that's one of the things I struggled both as someone who experienced a parent who's gone through it. But also, as a clinician, he said, there are indicators, but there's not a way of really closely identifying until you actually walk with them and be in a journey for quite some time, which takes a lot of energy and resources, then you start to understand that that person has some kind of mental health issue or health condition.

Joel Kleber:

Now, from a clinicians point of view, what's your opinion on this can be very controversial, but I don't base my opinions up, for example, I went into, I looked at a lot of the major brands in minimal health space, and I downloaded something from the Black Dog Institute, which had the thing about bipolar. And they had on there about bipolar about treatments. And they didn't have a CT mentioned as a treatment, which I found very odd. I emailed and I never got back, but that's alright. Why do you think? Do I talk about electro convulsive therapy and how that works with bipolar? Because I know, it's something that's not talked about a lot. And is, can be very divisive. Online. I don't think we know how it works. But it does have an effect. And obviously, it's a catch 22, right, like for me personally, just from this is from personal experience, or from a medical expense, I believe, excessive AACT was done to my mum and basically caused her to develop a condition called PSP, which is progressive Supranuclear palsy, which is a rare brain disorder. And eventually, that's what killed her. And I believe all things being held equal, if she didn't have the AC T, she would never have developed it. But saying that she didn't have the AC T, she could have been committed suicide or chose to enter life. So sort of like a catch 22. So maybe going to talk from a clinic from a professionals perspective on a CT itself? And what are your thoughts around that?

Unknown:

Yeah. I mean, I have to be honest with you, John, I don't have much experience about AC t, because, you know, don't get me wrong, but I do know that that is a model of treatment that's still utilized or used. In some cases. I've my mum never went down that track, or at least not that I'm aware of. She may have had some treatment in hospital, which wasn't snide to me. But the the issue about the treatment one is a really important one, because my mum went through a huge number of medications, there's always this trial and error of medications. Because it's not like as if the doctor says, okay, you've got bipolar, he's on medication, take it for a year, or whatever it is twice a day, and you'll be fine, like a cold or flu. Some of the medications that made things worse. You know, there were there were times where mom was taking some medication and the doses. And I have to say, I do struggle this in I might be I need to be very careful a little bit about what I say because I'm in a sector, but sometimes there is so much focus from the clinicians on the actual treatment. In other words, they want to know from my mum, not about how she is but what those you taking how regular you're taking. And the whole therapy session becomes about what my mom's taking how much medication or dosage ratings in the psychiatrist spends that time, just understanding the medication dose without really going beyond that. So I have struggled with that perspective of caring or treatment of people with mental illness. What I can say is, there has been times where it worked exceptionally well. So when my mom's going through different trials in different areas, there's been a couple of cases where she took a medication, and it helped, it really helped not only did she when I started seeing her kind of being back to the state that we kind of understood as her being well, but also gave us some prolonged sort of stability as well in her moods, which I thought was really helpful. But then after a while, the medication kind of I don't know loses the effect.

Joel Kleber:

Lithium wears tolerance to lithium, or whatever it is.

Unknown:

Okay, and it's kind of going back again. But what I can say is that, if I talk about treatment, and AECT might be one but then there are some very strong medication like the mum, my mum, up until recently was still taking a depo injection in her leg in a thigh every month. And these are very toxic ones that you have to take blood tests every month to make sure she doesn't actually become toxic. And to put someone through that kind of treatment, it's gut wrenching, but also knowing that it's also experimental you're not sure whether that treatment is going to work or make it worse. It's again a bit of a it's kind of a leap of faith actually in the people that's trading but I've been on both sides I've been the one where I'm thinking you know shit, either we go down this treatment path where she's gotten worse. Now why didn't the psychiatrists or the people who are caring for her knew this and also checked on her to make sure that you didn't get worse. And then on the flip side, there have been times when you can see my escalating but then you know, attentive and attentive clinician help to to give her the space that you need and for some reason, the medication will were brilliantly, you know, she was able to move, she was able to get a routine, she was able to get back to work, you know, we have spaces of two or three years where in the eyes of a child that life was reasonably normal, you know, she will even shut up on the weekends to watch us play soccer when we're kids. So there is this trial and error. And I think what I struggle with is that kind of still trial and error about a medication we talked about, you know, health has been a scientific endeavor, and things should be, you know, black and white, or at least closer to black and white. But in the mental health space, there's still more element of trial and error in supporting people with mental illness. And AECT is one of those because sometimes it works for some people. Other times, it doesn't, and it's a bit of, you know, let's see what happens type of approach, which is very, I suppose, in some ways, not the best course of action.

Joel Kleber:

But that is a good point to make sure that it is very experimental still, because I'm unwell, mom's Medical Guardian, I have to make all these decisions and our psychologist, psychiatrists bring me out of the blue state, we're going to give a massive pain or whatever it is, and it could have heart issues and stuff with a dissenter for us. And I'm like, Gee, like, this is pretty full on. But um, that's just the reality of when you live in this little sort of environment, that's what we have to go through.

Unknown:

Yeah, yeah. Right. Exactly. And it's, it's the nature of working in this space. Because there's still so much we don't know, it's the other thing too, which I think people were there. It's an illusion that, you know, that we know a lot about our health and science and things. But when it comes to the brain, and moods and you know, human nature, per se, there's just far too many dynamics to say, Yeah, great. We know what the answer is. Because, you know, I used this analogy, when I was teaching or helping younger kids to come in. You know, the brand is like the universe, we still don't know so much about it. You know, if you if you really think about it, like people think oh, we know about the universe, but the universe expanding? Fact is we know so little, you know, and the brain is such a complex, you know, all them that we know so, so little,

Joel Kleber:

I think it's a big project in America going on with the China map every neural pathway in the brain, I think Obama approved or something back in the day. But I think that's happening at the moment where they you're right, that's what they don't understand the brain. Oh, really? Do we

Unknown:

know? I mean, we know classes. We know as much as we know about the universe. You know, we know galaxies, we know, you know, light, we know, gravity, we know and we know, you know that parts of the brain are associated with, you know, the vision or smells or a memory and we know classes. But how that interacts how the someone suddenly get delusional to the point where they think that their life's in danger because they perceive that someone's outside the door when there's no one there. And it becomes a physical reaction. Like they're actually acting on some something that's not there is there's so much we don't know.

Joel Kleber:

So why did you go into the field then bill because obviously, when I grew up for me, I hate it. I didn't have anything to a psychologist, psychologist I want nothing to do with him was very helpful. But where's you've gone into the field? So how did that come about? And what made you want to get into the work?

Unknown:

I actually, I was gonna say I fell into it, but it's not really true. Actually went I went into uni, because I struggled through school, to be honest with you, I really, really struggled at school. And I just scraped in enough marks to get into uni. And what I wanted to go into uni was very much to do architecture or design and get something completely different. There was a topic at uni that turned things around for me, which was, was a history and philosophy of science. And there was no I remember, clearly this tutor asked me a question or whilst I born me, and not you, you know, and, and that resonated with me, you know, because there's some, you know, we can learn about engineering and technology and design and politics or law, all these constructs that we've done, but there is a fundamental question here about human nature that we probably, you know, did give me a profound impact that, you know, people are different, why are we different, you know, we, we all use money, but we have the perspectives and different understandings of life. And so, the second year, I was doing a science degree, I decided to take psychology, I thought, you know, this is probably an important aspect of understanding and how I justify myself is even though the journey was difficult with my mum, you open up the eyes to there's so much about human nature that is actually fascinating. You know, particularly we talk about not only just an individual going through their own emotions and in life but also about how people interact with one another, you know, families, groups, workmates and things. It opened up a door for me which I think I became very, very interested and also passionate about, because I started thinking, everything that we know about the world through our five senses, you know, each individual has the five senses. And we interpret these differently. And the way I see it is probably one of the most important frontiers of, you know, the future, is how people interact with each other. You know, we talked about Elon Musk, and all these wonderful endeavors that people are creating enormous things and challenges. But ultimately, it is people who make these changes people, you know, how we contribute, how we collaborate, how we engage with one another how we trust one another, you know, so you can have economic system, you can have an entrepreneur, we can have legal systems, whatever it might be, ultimately falls down to how people relate and connect with one another. And that, to me is where it was a bit of a life changing moment, I think, second year at uni. That kind of, yeah, my experience with my mum gave me some insights I shared with you before Joe, that it was kind of almost inevitable, because when mom was in my mid teens, and because my mom didn't speak English very well, I was actually sitting in the psychiatrists sort of translating. So it was like some of the questions and some of the psychiatrists and doctors questions were quite fascinating for a young kid to understand. So yeah, I kind of grew to love that kind of construct or understanding of psychology. And I didn't look back

Joel Kleber:

there, how did you stay on the straight and narrow growing up? Because I think we, when you live in a situation like this, you have every excuse to not achieve or to go the wrong way, like, you know, to get on to do to do whatever I can, if it's alcohol, drugs, or do something else, because you can use get that victim mindset where you can go look, life's crap, you know, blah, blah, blah, I'm gonna do this. So how did you stay on the straight and narrow, growing up to go and achieve the success you have?

Unknown:

I mean, it seems like I have all success, but it's never been an easy road. Never been an easy road. I thought, you know, I just failed uni. I had to go back and do it. Other subjects, you know, you it hasn't been like a lineal sort of things. It may look like that. But it wasn't. How did I stay on track? I think one of the things is that I had an enormous sense that responsibility fell on me. I don't know if that was true for you job. But for me, I'm a migrant. For family members in Australia. I had to translate a little bit to my father and my mother and navigate the sort of world. And it never occurred to me that I just want to leave all this and because it just felt like as if i That was the thing I had to do. Because I had to kind of say that parental FIDE responsibility happened with me about 1617, that kind of, you know, don't don't go down the drink. Even though you know, when you're teenager, you do do some risky things. But in my head, there was always an element that, okay, you only go a little bit, but you don't go that far. Because, you know, you need to be strong for the family type of approach. And it may sound like a cliche, but but I think there was an end. And I have to say, my dad was, you know, my dad was enormous inspiration still is an enormous inspiration to me, because looking back at what, how he did things, how he navigated how he manage, because he talks sometimes a very, I mean, I experienced some of the things from my mum, but he was living with my mum, he was going to be living in a line next my mum every night. And he he was very devoted and money that he was, he was he still is to some extent, but but he's still very much in love. She was always an element. I've always understood that my father who has had enormous love for my mom, even though I didn't see it the other way around. And that was a very strong, I suppose, message for me that you can love someone, but I might not necessarily love you back. But I did see my enormous devotion. And, you know, there was an inspiration there. And like I said to you before, my dad also helped us always to be very busy. Being busy really helped. Sport was a was a really big part for us. You know, there was a time when my brother and I were six, seven days a week, always doing some sport or whether it's, you know, we were living in Sydney with his police Boys Club, which is like be like PCYC we would go there three nights a week we'd play soccer twice a week we'll play tennis twice a week would be on the weekends doing one sport in the morning when other sporting afternoon will be catching. So all I remember is outside of school hours, we had a whole regime of sport that kept us busy and focused and and that helped. Even when I was going through university.

Joel Kleber:

I think that's the best. That's one of the best bits of advice I generally give as well as what you just said is throw yourself into something you're passionate about and just do a lot of it because you'll get self esteem and self confidence from that and you can take yourself out that environment. Same thing for me. I did a lot of sports and I played a lot of guitar. So whenever I play guitar My mom left me alone. So I could practice, the more I practice the more but left alone. So I practice a lot. And I got left alone. And that's just the way it was. But yeah, I agree with you, as you said, Throw yourself if you're a young person or in that situation, throw yourself into something you're passionate about, doesn't have to be sport, it could be arts, whatever it is, or what have you. And just devote yourself to that. Because not only that could even be your way out to do something else. But you'll get that self esteem and that self love from that, because I think a lot of kids in our situation grew up as well, I think they're finding now studies is very low self compassion. And there's very low self esteem, because they're in a situation where it's very, could be very depressing, or very dark at times. And they think, Well, I don't deserve the best in life. So they don't really do much to get themselves out of it and stay in a path of negativity and don't really want to achieve much, which I think there's some studies and stuff I've read online. So it's very important to find something you're good at, and do a lot of it, get yourself some competence.

Unknown:

Couldn't agree with the module. That's exactly right now regarding

Joel Kleber:

in regards to what your organization does now. So Jenna, talk about more what you're trying to achieve. In the mental health, mental illness area.

Unknown:

Yeah, so our organization is called the Independent Community Living Australia here in Sydney, we we do a number of services predominantly is around mental health. And I think one of the biggest programs that we do is called supported independent living. So these are people with what we call chronic and persistent mental health. And we're trying to help them for getting a long term accommodation. So these are people who not only have a chronic mental illness, but also has disadvantages to their lives, which means that they may not have family connection, they have been very isolated. And so they essentially need some stability in their lives. And so a lot of the work that we do is around people with, you know, long term persistent mental health, and we try and support them into a home and we put 24 hour support in their home. And we get three or four of those people who have a similar condition to be supported in the home and help them to maintain some sort of, you know, to get their life back on track, support some recovery and see how much we can support them over long term. Some, not all of the consumers that come to our program, don't have any family. You know, for whatever reason, throughout their journey, either their relationships have been, you know, severed, or they've come from another country or, you know, the, the families kind of walked away from the particular person with mental illness. So we do provide a, some, some support with these people and get them, I suppose, the ability to just give them some sort of consistency is probably what we do. That's the bulk of our work. We learned earlier that we are trying to also look at developing the step up and step down processes, which is prevention recovery, I think, to me, as I mentioned before, the the biggest stable part of the element is hospitals and GPS need that space in the middle. So we've been really fortunate the organization that we have that we've developed one of the few processes here in Sydney, which is still trial sort of places. But we're getting some really good results, too, which gives us that ability to get that buffer and allowing people transition to and from, or even avoid hospitals, for people who have a mental illness. So that's going really well, we have, we also do a lot of work around pure works. So and this is part of why I think it's so important to have something like yours is because we talked about conditions we talked about in our hospitals and treatments. Another piece of the puzzle is also having the lived experience to help people understand and walk through the journey. So it's very different from a psychiatrist or psychologist telling you this is what you need after you leave hospital, as opposed to someone said, Look, I've been in the hospital, this is what experience I had. These are some of the things I found when I went back home, and then share those experiences. So there is a part that we do here that we try and promote a lot is our peer workforce, to try and complement that treatment process that you do need some kind of mentoring and support through these transitions. I guess that's probably in a nutshell, a lot of the work we do is with people who potentially could be homeless who have, you know, quite a lot of disadvantage. But I'm proud to say that I think we do some really good work, really good work, and we've got a great bunch of staff who are quite committed. And in the war, if I can just plug a little bit more. Joe, you said one of the things that COVID has highlighted, I think is is the enormous strength and capability that a lot of people in this sector and we talked about this disability sectors where we're currently at where they do go and there's a lot of people that provide care that often unsung heroes. I know they were talking about COVID, where we've got the nurses and we've got the paramedics, there's also the disability in aged care workers who, you know, during COVID, they still have to show up to their shifts, they have to have to travel through public transport, they still have to show police that they could travel and be part of the service. And they still needed to get vaccinated first, you know, in the stripes, so this workforce that we working in, also took the brunt of the COVID experience, you know, they couldn't work from home, they have to show up the shifts, they work with people were very vulnerable and sometimes quite volatile. So what I think it's really important to recognize is that, if we're ever going to look at a system to recalibrate, there needs to be more emphasis in the people who provide care, you know, and we'll pay people just a little bit more than what they might get at Bunnings. But they were showing up, you're supporting people in need, you know, and if anything I give my shout out to the government is that we do need to recalibrate a little bit about those people were encouraged proficient, to make sure that there will support it and, you know, recognized,

Joel Kleber:

I agree with you 1%. And they're actually a useful profession, there's a lot of use or not use useless professions are paid a hell of a lot more money to do not a hell of a lot. Whereas I got people who were doing this sort of type of hard work, and you know, and they get maybe a little bonus here and there, but they showed up and they kept everything going and their role in regards to supporting people and how that flows into the economy. I don't think they ever really truly calculate how much of they save the country money in regards to trying to put people in position to be productive.

Unknown:

Exactly, exactly. I mean, when we talk about numbers, that's when we get people's attention, and talk about dollar signs. But if we took out all this disability workers in there, let them go to the hospital systems, you quit, we couldn't afford it. So yeah, and that was been a highlight. And I guess I couldn't be more proud of the quarterback culture that we have here at ICLA. To really, still roll our sleeves up and get on with it. A lot of people did. It's been quite taxing. But a lot of people now now work in our sector, to be honest with you have done that.

Joel Kleber:

And what I do not know is something before we did that, which is about your dad, because in regards to relationships with someone's got schizophrenia or bipolar, I don't know how I don't know the statistics on it. But like my mom was a single mom because of it, really. But it's not a common I don't if it's a common thing, whether the person stays in a long term relationship from what I know. But kudos to your dad for doing that. But that's a thing where you've got these relationships where the, the other partner is such a, it's such a hard place to be for your dad, I'm sure it would have been in for someone's mother or something. But they're absolute heroes in what they do, because they're on the first line regards to suicide prevention, making sure the home is doing its thing looking after the kids, there's and then you got that extra burden where they might not be getting that love back from that person. Or it could be very, very difficult yet they toughed it out, and they stay for the family unit. So we're going to talk about that more, because they don't get any attention whatsoever in what I say you have all people an athlete has, you know, shares their story about depression once, which is fantastic. It's all the mat national coverage where you've got someone like your father supporting, coming from another country, supporting your mother for many decades and raising a family and doing a really important job to the community. Where's the recognition for that? You know, and that's, that's, I'm going to talk a bit about from your perspective.

Unknown:

Yeah. You got me a little bit of motional II, Joe?

Joel Kleber:

Well, it's important because I just don't think I might suddenly cynical on this. But I think from our perspective, we've got the authority to speak on this. And we can speak on this in regards to mental health awareness is great, but all people think about is depression and anxiety. And that's it. Yes. The only time it gets coverage is when there's an athlete, I've been had depression once fantastic, and I share their story, all of a sudden, they're the pin pin up person for mental health, it shouldn't be the case, it should be the real people like yourself, and not your dad, who have lived with this intense burden for the role of your lives. You know, and this is where the attention this is where the focus, and this is where the support needs to go. Moving forward. Because at the moment, it seems to be getting sucked up into a whole bunch of marketing for websites and brand ambassadors and all feel good stuff that you and I would say on LinkedIn all the time. We know what the real stories are, and the real ramifications for your lives. I've spoken about in the same sort of even acknowledged what I feel in the mental health awareness movement at the moment, which is why I'm happy to say it and go on these sort of rants because my piece a lot of people off the way I do because I keep going on the better. But I think that's where the real change will happen. You know, in this country, I think people with bipolar seven, eight times more likely to commit suicide than someone who doesn't have bipolar. Yet. We never hear about that mentioned and we don't put what I feel enough resources to supporting those people and those family units.

Unknown:

Yeah. Yeah, you're right. And I mean, my dad is been a huge hero mentor to me. There's no doubt and I think one of the things that that It's important to highlight here is the not only my dad struggle with some very difficult and dark times. And at the Times also, this, if I can put the if we were to seek help, that we found more barriers than we did just remember years ago, where we would sit, try and fill up all these bloody forms and we fill up the wrong form and go to this backwards and forwards and it'll suck the life out of my dad, because he's already on very little energy tonic maintain things. And then he goes to an agency, which I'm not going to name and, and you'd give him lots of forms and have to get verification of ideas, you have to go somewhere else. And this is before internet. So everything had to be run around from one place to the next and next and next, just to get some support. And that was a huge, you know, barrier. Yeah, to kind of really push hard to try and make sure that these things happen. I mean, it wasn't what I think it's important also, just because someone's has mental illness, it's not always a burden. And I think this is where I think I rationalized and my dad might talk about this, because there, there there is some high times I mean, that when my mom was manic, I'm assuming when in things, we're on such a high, it's quite, it's quite lovely to have someone who's so much, that's my experience with my mum is so full of life, you know, and there's highs, he takes a whole family with it, you know, that, then there are little snippets of those times where we kind of gives us hope, I guess. And I think that's one of the things my dad and I would talk about is, you know, that 80% of the time, things were quite neutral or we kind of dissipated something 5% will be absolutely wonderful. And 10% will be absolutely horrible, you know, but, but it's that element, knowing that there could be that high coming as well, I think that's what allowed my dad to really stay connected to my mum, you know, that kind of ability to know that there's still a bit of love. And when those times come, you make the most of it, because that's when you can actually get the best out of us as a family but also as my mum. And, and my dad's a wonderful man, because he's very calm, very perceptive. Very mild mannered. And he goes under the radar, you would know that he knows the kinds of things that I have my brother and I experienced in the background, the kind of things that you know, people would never ever see that life, that part of him where he and things like managing finances, managing, you know, running around to help them my brother and I to get to different places. You know, there's so many things that happen in everyday life that you probably take for granted. But when times are really tough, particularly for us as a family we're for we came, we came to Australia with very little money, very little money. So my dad had to start up again, the kind of sacrifice I mean, I remember, I probably sharing too much here. But I think one of the things I remember clearly when we first moved to Australia is and my dad was still trying to find employment and back in the 80s wasn't too hard to find employment, but but we're trying to settle in Australia. And dad had this malady that he would actually do a paper on. And he's a man who's 37 years old. All the other kids are doing paper runs throwing paper, and my dad was hoping to get some money, they will give us some money, enough money for the end of the year for Christmas. And he was out there doing the paper. And so, me knowing that only kids do this, I went out with him. And I told everybody that my dad's coming with me rather than the other way around, just so that we can, you know, say face so to speak. But those little things that happen all the time. That, you know, it's the Have you ever heard of the book called atomic habits? by James clear? Yeah, it there's, there's a little atomic habits habit and a family that just helps us to be, you know, stay buoyant. And there's enough of that, that keeps us I suppose, you know, hopeful about our family and we grow up together. My brother and I are good mates even today. Like we were talking about fine today about that he needs to come and visit mom, because she's, she's not she's okay, but not great yet. So, you know, he has to come up from from Canberra and spend a bit of time with that.

Joel Kleber:

But what an impact in the community your dad's had, because, say my dad couldn't handle his mail. Right? So but if your dad is hung around and created two really productive members of society, right? And that's really important. Whereas if they're not there, who knows? What could happen, and you can't blame that person for going the way they do. But a lot of people go that way. Whereas you've got the benefits of the community of if your dad could get some more support or have some more support or take those barriers away. Because the better chance he's got of raising two really productive young kids, the better it is for everyone, right? Long term. True. Yeah. It is

Unknown:

true. It is true. I mean, not to dismiss much of what my dad did. There's also a little bit of luck, you know, along the way, you know, for us, we were quite fortunate And I think one of the things that helped really helped us is, when we moved to Australia, we were really fortunate because we were going to move to a really far away place within Sydney away from where my dad was working, it just so happens that he knew someone, and there was a unit not too far from his work that was going to open and they reduced the fee or the rent on that enough for us to be able to afford it. Which meant that my dad didn't have to travel so long, because back then we move, we were quite poor, and we kind of Australia, and then you'd have to commute an hour and a half to get to work. Whereas, you know, for me, I'd see those little things that happen as being, you know, such wonderful gems of luck, because my dad was only 15 minutes away from work. And so if something happened at school, or something, that they could literally pick up the car and come up and see us. So, I don't know, I mean, John, I think every family is different. The other thing too, even though we're just four, and it seems like isolated, we just had to rely on each other, including my mom, you know, there were times where we just, there was no option, we had to make things work, you know, that kind of pushes you into to just be either creative, to persevere and to make sure it makes it works. And don't get me wrong. You know, it may seem like I'm 52 years old, and I've got a career and and reasonably will establish, there's been some dark difficult times, I'm sure with a lot of people that I guess you keep in mind a little bit about where you want to go and focus on what you can achieve.

Joel Kleber:

And what do you see in yourself now as a personality trait or something that you've got? That is due to living in that situation, that's a positive thing in your life.

Unknown:

Yeah. As you know, I'm in a role now as an executive as a CEO. And I'll be fair, because one of the things is that I'm very mindful of the individual needs and be very focus on empathy. And one of the things I sometimes need to be mindful of as a CEO, so sometimes you have to make some really difficult decisions. And I struggle, struggle is not the right word. But every time I have to make some difficult decisions, because of the nature of the of the organization, or need of a particular clinical decision that needs to happen, hurts, you know, I find it difficult because your your, your gut feeling is, but that person, if they just keep an extra time, it will just help them out a little bit more. That could work. But in an organization where it can be quite detrimental. And the domino effect, if we don't take action, and we put other people at risk, you need to sometimes make decisions where you don't necessarily need to, or you take into account the individual needs, but you can't just focus on the individual needs. And I think what my experience has been is that, as a young kid, growing up with a parent with a mental illness, you often go with the flow, and you try and make things work. But as you get older, you know, I use that scenario with the lifeboat decisions as you get older, and particularly in the role now as an executive, where you have 10 people to say, but you've got a lifeboat that only fit five. And you have these situations and organizations, we you know, we only got such a funding for this amount of funding. And we can only take these sort of people, but the demand is there. And you constantly and I even to this day, I manage it better now. But it is something that I see that I need to be mindful of that I don't focus too much on the individual needs and just go with someone individual, I need to actually step back a little bit and focus on the support of the of the system or the or the organization in my case.

Joel Kleber:

Now from a funding perspective, Bill, what are you seeing is happening because in Victoria, we've got our Victorian government's promoting with whatever it is a billion dollars towards mental health, I'm gonna charge businesses and I don't know where the money goes. But where where? What funding is needed in in what areas can make the most impact do you feel?

Unknown:

Yeah. Well, again, I'm probably blowing my own trumpet here. But that prevention that step up, step down, I think it's a critical one, particularly here in New South Wales, because we don't have that same sort of sort of infrastructure as you haven't Victoria. So I do see that has been a key one. I think one of the things that the biggest gap I see is a transition of care. So for example, if you go to hospital, you get really good treatment, you're there and you you know, my experiences mean, you get 24 hour support, he gets a car to get the best sort of support and that person and then when that leave that and go back home. That to me is the biggest gap is a transition of care and it's not just in mental health or Mental health is probably more so because mental health overlaps with things like housing, employment, family and other things. But you know, it could be your, your firstborn child, you have your child and you go home, and the kid might have a whooping cough or something. And that transition of care doesn't translate from the hospital into the community and get some care, the community can't read your GP and say, we can, but you need to develop those, those relationships. The thing that I struggle the most with funding, to be honest with you, Joel, it's not so much where the money goes. It's the funding cycles, it's these kind of yo yo effect, where you know, that we create a program, we develop a number of resources, we put a rationale in the business case for it, we go to either state or federal government, and they give us the money and we get the money up and running. And then three or four years later, they say all that funding cycle is finished, it's gone. So we promote, we resource it, we think it's a good thing, there's some evidence to say that the service is really good. It's that that to me, frustrates the hell out of me to be honest with you, you know, because there's all these funding cycles, and the government doesn't necessarily provide any stability in the community sector, which is where I work. So you constantly as a not for profit organization, you're chasing the money to kind of continue through some services and making things happen and work. Is that

Joel Kleber:

purely a political thing that the funding cycle? Or how does it?

Unknown:

It's a bit of both? It's a bit of both? Sometimes it's, you know, it's a response from the government. So for example, the flood of COVID, they'll throw some money into the community say, can you do this, and then you know, that the needs no longer there? I guess the difficulty I have is that you never provide stability. And that continuity of care in the community was that space, like you get really good treatment at the hospital, and you get some sort of continuation of support with your GP or primary health. And that, again, that depends on on how well you connect with it. But in the communities, if I needed to get additional services or something, because of the funding cycles, services always change. And criteria is change. And the needs change and outcome reporting is change. So there's always constantly a flux of changes in this space. And it doesn't provide a stability for that sector.

Joel Kleber:

So what should happen with that is it's something where the cause it's a three to four or five year funding sources is something where you want to see a 10 year period or how what would what would actually help in that in that area?

Unknown:

Yeah. I think it's a matter of commitment and what the service is. So if we, because every time there's a funding cycle, different organizations put their own branding on it, they call it different things. So you want to have a hospital and you want to community sector and you want to primary sector, so it's just a matter of saying, okay, these are all the different transitional services for this age group. One of the things that I think did work well, again, this is my personal opinion, I'm, I might talk too much either I might get in trouble or some criticism coming my way. But one of the things I found really useful at the very early stages of when medical articles were developed, is that there was a sense that as organizations, whether your community hospital or primary, that you focus on the needs of a community or a region. So there was an element to try and bring service together that you collectively commission. So in other words, you get money from the state money from the federal government money from the local government, and try and say, Look, this is our community, it will, whether it's a local health district or a local community council, and you say, Look, this is what some of the needs are these we identify, these are the people that potentially has needs, whether it be hospital admissions, or whether it be, you know, immunization, whatever it is. And collectively, you've honed in and support that community. You can bring in police, you can bring in ambulances into that discussion, and you start to share that information. So that there is an underlying focus on that responsibility for that community. And I think that's where the future is. And the difficulty is trying to get some consensus. And, you know, with politicians coming in our politics and different agendas keep coming up and in some people have louder voices and others. So sometimes things get funded for things that potentially shouldn't be funded.

Joel Kleber:

Yeah, I agree. And I want to talk real quickly about sharing your story, because thank you for sharing a lot today. It's very courageous thing to do, but it needs to be done. I think that's what's gonna needs to happen. But what's your opinion on sharing this story? Because we know for a fact that there will be people in Canberra or elite sports people, whatever, who had a similar situation was, but it probably does hold to anyone I know Greg Hunt recently shared his story, which was online a little while back, but for me, it's like, well, if you've got someone in that big position, the Health Minister you would think, well, this is my main priority, but now they say well, Treasury basic controls are the decisions but What's your opinion or advice for sharing your story because for me, I think the more stories that we get like yours, Bill, but as scale, we can start maybe shifting that awareness and that funding into organizations like yourself into these other areas, which would, would help people, so it's meant on us.

Unknown:

I mean, the reason I came on to this show, Joel, to be honest with you, it's not for me to push an agenda. As such, I think the thing that really resonated with me about your podcast or the lived experience, is exactly that the story is about lived experience. For me as a condition, the one part that we need to elevate a little bit of is allowing people to know that what you're experiencing is not in isolation is that there are other people that are going through very similar things. And as you and I, Joel, I think we resonate with a lot of our stories in that made me feel comfortable talking to you. But you know, a whole lot of staff here that I work with, that I haven't shared the story with, because, you know, either it's not relevant, or there's a different relationship that I have with him. So I, I think the That, to me was really important, why I came here is to share that that lived experience and you share the stories means that you, you know, you can share a little bit about you don't have to work through these experiences in isolation or thinking is just me or just my family. There's other people there that needs to understand that, you know, happened to others. And because there's a, you know, when I grew up, I technically I believe, as far as I know, I was the only family with someone with a mental illness. I can't recall any my other friends having anything like this. So. So that, to me was important. The more stories, I think that you I think one of the things that it's really important is to try and open up discussion, it's the elephant in the room is that when you talk about mental illness and mental health, I think that's what I really liked about your podcast is that we really do need to understand the differences in types of mental health. As a clinician, as a pure workhorse, we need to start articulating the differences in presentation and needs, with people with different mental health needs. And there is in my mind, a very different way you approach a mental illness as opposed to a mental health condition that people might be experiencing. Not to say it's less valid, because obviously, people are very unique and, and they experience things differently. But that's, that, to me needs to have that that distinction. And if more and more people start talking about it, I think it is start to shift the needle. You know, I mean, I know, I sometimes come across as being very critical, these large funding bodies getting in a large organization get a lot of money. But you have to, in my experience over the last 40 years, you have to give some credit to things like beyond blue or black dog, because I do Shift and needles, you know, it does allow us to have this conversation the Are you okay day elevates a discussion where was buried quite a number of years ago. You know, and maybe we're point where there's been enough elevation and discussion down now that when you start to collating the details around those discussions in the funding should then be redirected to a more pointing end of the discussion as opposed to the more general discussion. So my experience, you know, if I, if I had my first experience, or mum went hospital 20 years ago, and now I think part of that is that shift in perception based on a lot of investment, this shifting of the needle on the discussion was, you know, that there's investments in things like beyond blue and black dog and a few others. If you wind the clock back 10 or 15 years ago, they were the first organization that kind of shifted that discussion into making people aware that we need to also talk about mental health is not just physical health. And I think now it's come a time where people through mediums such as yours, we can now start to refine that discussion to more pointy end of the discussions, things like the family things like how there's help happen, not just for the individual who's experienced in the mental illness, but the people around it. How do people pick up on their signs, there are even things like, you know, mental health first aid, which my dad did a few number of years ago, which is a great thing, because he allowed my dad to understand a little bit different perspective of my mom's presentations and how she she said, things are moving in our direction, probably a little bit slower than we would like, but it's still going in the right direction.

Joel Kleber:

But what I think needs to happen, because I think that the big brands, as you said, they have moved the needle on discussion, but I think they've got to recognize themselves as brands now. And they've got the public awareness. So if you've got the public awareness, you need to extend your scope of what you do. So for beyond for example, beyondblue is about suicide prevention, yet they don't have anything about bipolar, schizophrenia, that's of any substance whatsoever. And I know for a fact when someone, let's say they have Bipolar, whatever brings up beyondblue, they're affirmed to a really small organization who might be able to help them who's got no funding, right? So it's like, well, if you're taking all the money, for metal, a lot of money and awareness for them and what you've done, which is fantastic. start broadening your scope to encompass as much as you can, rather than just shifting on the series because they Always throughout the state, you know, nine people committed suicide or today or whatever they don't say specifically, I will one of them had bipolar one of them had schizophrenia. Two of them had this, you know, it, it should be encompassing the whole thing, I think, because they've done a lot of great work, as you said, becoming these brands and moving the discussion and needle. But I think it's time to move beyond that now. to the, to the point and as you said, which is really good point. Yeah.

Unknown:

So where to from here, then Joe, I mean, I feel like has been spilled my guts out a little bit. But I think it's all for a good cause. And also, in some ways, just to give it a little bit of context about the kind of work that we do. And, contrary to a belief to I think there are some psychologists and psychologists and GPS out there who are really good people.

Joel Kleber:

Now they're really just not that's just my my cynicism from my from my experience, unfortunate sort of Doggy Dog mean till now, like, you know, I've never really I didn't speak to a psychologist, I was probably 29. Because I had a few issues going on in my personal life. And I've sort of traced them back to I've never really spoke about growing up with the parent, the mental illness and a lot of stuff that went on with that. And I think I had to go through a couple for a rat, I found a decent one. And then because of the cost, I stopped as well. So I think the cost as well still very prohibitive to a lot of people because you can't with mine and your situations, you can't really ring up a hotline and talk to someone over the phone about you've got to really go to see someone in person, there's, you know, see if you got PTSD, or talk about that sort of childhood trauma and try and get resolved.

Unknown:

Yeah, I agree with you. I agree. It does take time to find the right person. And the sad part you just mentioned which another talking about funding before about the cost? You know, technically speaking, that's where some of the funding should go is to alleviate some of the costs associated with an individual forking out money for some treatment.

Joel Kleber:

Let's buy the expensive man like I, like I've got to go to a GP, I've then got to get on a mental health plan, even though I'm not really depressed or anxious. Yes, to get my Medicare rebate, yes. And I've got to go find someone now you can't book him for three to six months at any one decent? Yes. And then you've got to go pay $150 or $180, sometimes out of your own pocket for each session. It's a very, and you sort of like, well, why should I go to all that trouble? I'm just gonna deal with it myself. Right. So that's what I feel that's a very real situation for a lot of people like me. And for, you know, for me, and a lot of people that say young kids or adults who grew up in these situations, we can't call a hotline, really, can we so we've got to get that proper treatment. And for us, you know, depending on how you grew up, you, you might have an aversion to the field in general. So it might be very hard for you just to even do it. So there's a lot of there's a lot of things, I think, as you said, the funding can go towards making made if you if you grew up in that situation, you get priority access or something I don't know. But

Unknown:

going back to the discussion we had earlier because there are these little funding buckets that come in to do some of these things. So I do know, in my experience that some Primary Health Networks were able to alleviate some of these costs by doing specific funding towards things like that. But you know, they're sporadic and sometimes not always sustainable. You know, I tell the story that I had a wonderful person who, who helped me because she was someone who, with a lived experience, she became a consumer advocate. Her name is Elsa Kearney, and she made a profound impact on me, because she always lived a life with with mental illness. And what she explained to me is that even she was very serious about managing her mental illness because my mom had half the time she taught to work reasonably serious at the time, she just neglected her condition. But this particular lady who I work with, said that she from very young age, particularly she got married because got married very young, she said she really wanted to she he was aware of her mental illness and too, she wanted to make sure she she was on the front foot to manage it. And so this is going go back, she, she passed away. Now she was the most dear wonderful person, but you know, going back a number of years ago, and her idea was that you want to see a psychiatrist once a month. And that was just a ritual that you wanted to do. And you'd think that and because she lived out in Western Sydney in very poor areas. That was really difficult, though a the cost associated with Medicare rebates and just getting someone consistently over and the same psychiatry. What she had to do is help and she had to travel quite a long distance to go and see a psychiatrist. And when she had young kids and things started getting in the way. It was almost like enormous stretch for her. Just to maintain monthly point what she said she didn't do after you know after her kids got three or four years old. She just couldn't do it. She just said I was enormously expensive because psychiatrists, a there's a shortage of enormous shortage of psychiatrist in Western Sydney takes six to eight weeks at the time that you're telling me to get an appointment. And then she has to travel an hour or so to get to the appointment, make a booking come back again. And so there are things that I think if we're smart enough with the with the government in terms of how that director funding, those things could be better addressed. I mean, one of the things, again, I'm probably talking too much in, maybe you need to cut this one out. But there is a lot there is reasonable amount of money in the system, it's a matter of also how to utilize it more efficiently. You know, there is a bit of waste, we know this, anyone who's in the sector would know that there's money that goes to areas that potentially you know, it's not really beneficial for the consumer or person who needs help.

Joel Kleber:

Like, I can say it on your behalf governments wastes money, you know, they're happy to spend it, but is it spent efficiently? Like a business per se? Definitely not. So I'm happy to say that. And that's, and we know, that happens, but um, I was gonna say, well then find that solution. Do you think, digital? Or how does digital then play into it? Because in America, I listen, a lot of podcasts of American I'm hearing them promoting a lot of mental health and psychologist or via an app on the phone and all that sort of stuff. How do you see that developing over here? Or do you think that will be a gap? Or is there just no substitute for an in person

Unknown:

visit? No, I think I think it'd be a complimentary thing. I to be honest with you, I think it's inevitable that that kind of app interaction will have or will happen. Because I think what we'll do is it will enhance your I suppose, connection with your professional. So for example, if you if a client came and saw me once a month, we could interact with an app in between appointments, we can send homework and share videos, gives information to the family, be able to reduce some of the administrative things as well, that, you know, I can maybe send you a prescription via this app, I can send you some recommendation to see another another professional through this app. I think to be fair, I think there is a future of where we could create a lot of efficiencies is through that online kind of platform. You know, you could you could do your own self assessments and get some insights without necessarily sitting in a doctor's office and filling out a questionnaire. You know, it's just a matter of coordinating that. And the other thing which you which I think, and this is why I think it will take a long time to get this sort of technology up and running is that people need to trust in this technology. And I think there is always an element of people not wanting to trust us to do this about having very personal information on an online platform. I mean, the government is having, you know, enormous investments in E health and medical records and things. And part of it is because people are still skeptical about the fact that there is an online platform. I mean, we heard about Optus just recently, you know, imagine if your medical records happen to be out in the dark web. So but it will happen. I mean, we'll get better at it. You know, I mean, remember, 10 years ago, I would never touch my phone to do banking, you know, and pitching now I was starting to see that I can have a little bit more assurances that if I do my banking online, it's really to be safe. But I do think it's going to take a lot longer. Until these apps become part of your suppose treatment or or sort of, you know, support. But it will happen will happen if it's a matter what if we get consensus, and we had some alignment in terms of efficiencies and health systems come together? It's kind of

Joel Kleber:

essentially it's the one thing I think America does really well, in regards is it, I don't know what you think about this bit. And in TV shows and stuff, even they talk about therapy, like it's commonplace for everything. Everyone, they always go, I've gotta go see my therapy. It's just it's growing up and seeing movies. It's like, what's the therapist, you know, but but they just talked about it like it's so common places. Now they've got a massive, you know, the text there, Silicon Valley wants to get involved with making you know, who's going to be the startup that has revolutionized, you know, online psychological care, I just think that their culture towards getting regular therapy for their children or for young people, it just seems to be such a non factor for them. Whereas over here, as you would know, you know, with Australian culture, it just seems to be it's a very still stigmatized or hard thing for people for blokes, especially, to go to a psychologist, so to say, actually even say to someone, they're going to see one.

Unknown:

Yeah, you're right. I mean, it's funny say that, because I had this discussion with my kids not long ago. I think the neocons generation is much more open. We call that a term that we call at home called urbanization. So it's the Oprah sort of element where people just discuss their things without really repercussions about how people might perceive it. So there is that tendency now when people are much more laxed about giving some personal information out to the world. But in America, you're right. There's a lot of therapy, a lot of discussions around therapy in there debunked, that element that it takes a noun to see a therapist, you know that if you have an issue that you share thoughts, which is not a bad thing, I guess the only way because this is a therapy, hoping, because one of the things, one of the things that I think that, as a professional psychologist, one of the key things, it's not just a matter of getting therapy, it's if you're working with someone very close, you want to work yourself out of a job, you know, you want to be able to that person get some real good skills and understanding and insights about their condition, to be able to actually have a life away from therapy for to speak, you know, to be in a point where they call recovery, where they're able to actually start developing some thoughtful patterns of behavior and you know, where we're essentially they'd become well or better. And, and that's a key, because I think there's a lot of promotion about you need to go see a therapist or a therapist, okay, great. But as clinicians, we are here for a purpose to try and help people move on past whatever, that's the moment that they're going through, to work through it, understand it, and not to linger. You know, to move on past that a little. I think one of the things the discussion had when my sons who are in their late teens, this, one of the things I do worry a little bit is that we go into this digital era now where everything has a digital footprint, you know, so it's really hard to go past an experience where potentially, if you did something 10 years ago, and it's online, people can always go back and reflect and pull that out. In because part of therapy is that you want to progress past that event, past that experience to actually grow from it and get some insights. So the new world so to speak, this digital age, is going to create a lot of challenges for psychologists, psychiatrists say, how do people move on to there and get re traumatized or they compartmentalize that experience to be able to focus on a different part of their life. But yet, there's an enormous digital footprint that's sitting there that can be always open up quite easily. So yeah, there's a dilemma that I think we probably need to put into context. And the digital one is a two way two edged sword, I think. One is all create enormous efficiencies, get held much closer to when they needed, get some consistency and alignment of care. But the reciprocal side of it, too, is that, you know, we're in can people leave that behind and move on to things in a different direction. To what what brought them to therapy in the first place.

Joel Kleber:

That's a great point. Yeah. And the digital Yeah, well, this how social media can affect long term, we already know it's having a pretty negative effects with young girls, especially with Instagram. Yeah, that's definitely proven. That, um, yeah, it's definitely gonna be an interesting one to see how it deals with in the thing, but the, but as you said, before, that, you know, sharing the stories, I think, with young people, hopefully, that they can share more freely, because for one, once you share it, and it's out there, there's you can't take it back for one, but you have power over as well. You can only share what you need to share, you have to share everything. But there's a certain power in once you can share it, like, share it online, for example, you have you own it, and then you know, what can someone say about it, you know, someone can be critical of you. But the end of the day, if someone's critical of some of the taking for being vulnerable, especially an online environment, what does it say about the person being critical. So it's, it's something where you have that power, and you can own your story now, and you can promote it and share online in the hope that it does help people to know that they're not alone. And then it can start shifting conversations towards some areas that you're passionate about.

Unknown:

But do you really control it? Because once it's out there, it's out there, isn't it?

Joel Kleber:

On regards to what you share. So you don't have to share every story, but in regards to, you control what you share. So for example, for me, I've taken the approach, but I just share everything because for me, it's therapeutic for me in a way, and I'm not ashamed about it, like what someone's gonna say to me, like, I've got a pretty successful career, and they're gonna say, you know, well, basically, if you know, my story, you shouldn't have I shouldn't have achieved what I've done. So you control what you share online. So if you don't want to share it, you just don't share it. But I think you control you can control and own that story as well. And and understand that when you do put that out there, you're going to help someone hopefully, and then also, it's out there for the long term. I think it's only a positive thing. But that's how I sort of look at it. Yeah,

Unknown:

I agree with you. There is some profound benefits to opening up these discussions and sharing it in a way that you think it's going to be, you know, useful for other people to have.

Joel Kleber:

Absolutely. Well, Bill, we've never gone for two hours. Thank you very much for your time, welcome. I really do appreciate you sharing everything you've done. It takes a really brave and courageous, courageous person to share it. And I'm sure there'll be people listening, who are nodding their head going through I went through that I can relate to that. I had similar things and I know for a fact, when we should when I share these stories like this, I had people randomly on Instagram, or Facebook or whatever message me Yes, in the DM saying that exactly. So thank you for taking the time. You're a busy CEO. Working in in this area. So I really do appreciate your time and, and sharing his throwing the lived experience. And I hope that more people can do so and be courageous. And as you and big thank you to yourself and also, you know your dad, what an amazing person to, to raise to two amazing young people and to be there for your mom in what can be a very trying circumstances, obviously good times as you said. But it can be a very difficult circumstance at times. And it takes a really special human being like your father to do that. So big thank you to yourself today. And thank you for sharing your story in the lived experience.

Unknown:

Thanks. So all the best. And hopefully, we'll touch base again in the future.

Joel Kleber:

Big thanks to Bill campus for his interview and for sharing as much as he did in we tried a couple of times, we had technical difficulties. So thank you to bill for coming back on again. And we spoke for two hours, we probably could have spoke for a lot longer. But about he shared so much important information in there. And for someone to go and work in the field as well to speak from that perspective just adds an extra level of expertise to which I certainly don't have so big thanks to bill for sharing that and his stories. And it's a very emotional interview. And especially if you can relate to what Bill was saying I'm sure there would have been stages during that you'd be nodding your head and like I was doing the whole interview, nodding your head a little bit of a smile on my face, because I could relate exactly to what Bill was saying. And I think when you do any views like this, it's important to have that connection a level of respect with each other. And I think you do when you have a parent with a serious mental illness and someone else has that you just instantly know what you go through. So that did provide a platform for Bill to feel comfortable to share as much as he did. And once again, I really do thank Bill campus for his time. And please check out the show notes for links to what he does. And I just really do respect someone who shares as much as they can. And we need more people to do it. And if you do want to share your story and the lived experience, please make sure you check the show notes and click contact. And please submit your details as well. I'd love to have you on Bill, send me a message on Instagram. And here we are. We had a great interview. So we need more stories like Bill, more stories of young carers and for people who grew up in these situations to start shifting the mental health discussion into these pointy end areas. Because it's sorely needed to please make sure you reach out to me if you do have a story to share. And once again, thanks again to Bill campus for sharing his story as much detail as his did. And we just need more people like that to do that. So thanks again, Bill. And we'll see you guys next week.