Get Real: Talking mental health & disability
Get Real presents frank and fearless conversations about mental health and disability, including people with lived experience, frontline workers in the sector, as well as policymakers and advocates. Get Real is produced and hosted by Emily Webb and co-hosted by Karenza Louis-Smith on behalf of ermha365 Complex Mental Health and Disability Services provider (https://www.ermha.org/).
Get Real: Talking mental health & disability
The role of provider-family partnerships for people with complex needs
In this episode we are discussing the importance of provider-family partnerships for people with complex needs.
Cheryl Jameson is our guest and she was in conversation with Emily Webb, host of this podcast, at the Complex Needs Conference in late March for the lived experience stream.
A mental health support worker of many years, Cheryl found herself on the other side of systems when her eldest child Josh was 16 and developed psychosis. He was diagnosed with schizophrenia, which was drug-resistant for many years.
We discover how her family has navigated systems and worked with providers to ensure Josh has the support he needs and wants.
Josh gave his consent for his mum to speak to us about their journey so far.
ermha365 provides mental health and disability support for people in Victoria and the Northern Territory. Find out more about our services at our website.
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We recognise people with lived experience who contribute to GET REAL podcast, and those who love, support and care for them. We recognise their strength, courage and unique perspective as a vital contribution so that we can learn, grow and achieve better outcomes together.
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Speaker 2:Welcome to Get Real talking. Mental health and disability brought to you by the team at Burma 365.
Speaker 3:Join our hosts, Emily Webb and Corenza Louis-Smith, as we have frank and fearless conversations with special guests about all things mental health and complexity with special guests about all things mental health and complexity.
Speaker 4:We recognise people with lived experience of mental ill health and disability, as well as their families and carers. We recognise their strength, courage and unique perspective as a vital contribution to this podcast so we can learn, grow and achieve better outcomes together.
Speaker 5:Welcome to Get Real talking mental health and disability. I'm Emily Webb. In this episode we are discussing the importance of provider family partnerships for people with complex needs. Cheryl Jamieson is our guest and she was in conversation with me at the Complex Needs Conference back in late March for the lived experience stream on this very topic. A mental health support worker of many years, cheryl found herself on the other side of systems when her eldest child, josh, was 16 and developed psychosis. He was diagnosed with schizophrenia, which was drug resistant for many years. For this conversation, we discover how her family has navigated systems and worked with providers to ensure Josh has the support he needs and wants, and Josh gave his consent for his mum to speak to us about their journey so far. Cheryl, it's great to be with you at the Complex Needs Conference and sharing your experience. So, just to give people the background, can you tell us about why you know so much about working with care teams and what happened with your family and your son, josh?
Speaker 3:Thanks so much, emily. It's just lovely to be here and I'd also like to acknowledge anybody listening to this with their own lived and living experience too. So my husband and myself were both working mental health at the time when Josh, who's the eldest of our four children, became very unwell very quickly. He was 16 at the time and became very unwell with psychosis which came on very suddenly and, honestly, didn't resolve in any way for five to six years. It was initially a first episode. So it's psychosis which didn't resolve which then became schizophrenia which then turned into a treatment-resistant schizophrenia.
Speaker 3:So during that time he had no respite from symptoms. We tried lots of different medications and while he was getting side effects from all of those, he wasn't getting any break from his symptoms. He was tormented and exhausted and it was honestly the hardest thing that we have been through. I'm really happy to be able to say now that Josh started clozapine just after his 21st birthday and that was life-changing and in so many ways he has recovered and come back. He's studying, he's working now and he has joy and a full and a meaningful life.
Speaker 5:So, cheryl, you mentioned that you are a mental health professional. You're working in mental health. When Josh became unwell. What was it like being on the other side, where you were seeking help and treatment for Josh?
Speaker 3:So in some ways, having some knowledge was an absolute blessing that when Josh became unwell, we were able to really see that quickly and realise that he needed help. I had some amazing supportive colleagues and clinical colleagues that really just were able to point me in the right direction and get that help. But in saying that, it's also the hardest thing that anybody can ever go through to watch this happen to someone they love. And it was very public for me in some ways. It was, um, a little bit like the emperor's new clothes that my personal and my professional work just collided in the respect that. Well, when Josh had his first admission, I had clients on the ward there too. So I remember being in a family meeting with him where, um, I was trying to listen to the information and find out where we're up to, and I had clients knocking on the door yelling out Cheryl, cheryl, get me out, get me out. And trying to peek in the door and trying to not fall apart on the ward as I was really quite emotional too.
Speaker 3:But also they say not to air your dirty laundry in public, but literally this one night I just as you do in the middle of winter in Melbourne done a bit of a hand wash of all my bras and everything and I had those drying by the fire and we had to call the cat team. Josh was really, really unwell. I just went into panic mode and didn't honestly think until we were all sitting in the room and he was being assessed and I was thinking the guys that I work with are in here and I've got all my wet bras drying in front of them. I also had a doctor that I'd worked with for a very long time. Say to me, what have you done? What have you done to him to make him like this? So I think, as a mental health worker, it was honestly holding up a mirror to my practice as well, because, honestly, I saw things on both sides so clearly.
Speaker 5:We're talking about what is helpful and how important it is to work collaboratively with the support team for your loved one, for your family member. Tell us a bit about that experience, about actually finding the right team, the challenges, and I guess you know what you found really helpful.
Speaker 3:I think at the end of the day, it's having clear communication, just clear communication and really not giving up. For me, when NDIS came in, it was very, very new. Josh's assessment was at the very, very start of the rollout in Victoria and it wasn't a ready workforce. So it wasn't a workforce that understood the complex needs of mental health. And I actually look back on our first assessment now and think it was just so ludicrous. The young girl that was assessing us had come from working in a bank the day before and she honestly had no idea what complex schizophrenia could look like, what Josh might need, and also the support people that we had in the room. We brought along one of Josh's support workers just as a bit of moral support. He actually asked the assessor out in the middle of our assessment. So that was sort of just the mind exploding process it was for us With NDIS. It really made me think, okay, what we want for our son is to have a full and meaningful life that builds his independence, that it's a life that he wants where there's gaps, he's supported in those we don't have, a life that he loves and is directed by him. But there wasn't at that time a workforce to deliver that. So I wrote Josh's first recovery plan, as directed by him, by really sitting down saying what do we want this to look like? It was about future planning as well, and it was about how do we enable him to keep his independence not really pathologize our relationship, because there was a real push even from day one that we would case, manage him or support, coordinate him. But for me it was really important that this process was led by Josh for Josh and directed by him, not directed by us.
Speaker 3:The other thing I would really want to say is keep ringing. Sometimes communication can be really really poor, or sometimes communication between care teams or medical staff can be not in layman's terms, so it can be a quick conversation that you really don't understand. So it can be how to just make sure that we do understand. So just keep asking. If support coordinators aren't ringing you back, keep ringing. Keep fighting, you will get there. And if the care team isn't right, keep looking. Change care teams, keep fighting, you will get there. And if the care team isn't right, keep looking, change care teams, keep looking. We're so lucky now that we do have some really experienced mental health workers working with Josh and the difference in him has been phenomenal.
Speaker 5:You just mentioned that. You know, sometimes conversations with people on the phone, with professionals and the care teams it's hard to understand what they're saying. What are some of the things that you would like the people who attended the Complex Needs Conference, the people listening to this, who work in this field, who are part of support teams for people with complex psychosocial disability, complex needs what do you want them to know from your perspective as a family member of someone who's got, you know, a serious mental health condition and there's a lot of barriers to them being able to live the life they want.
Speaker 3:I think number one it's to know that recovery is always possible. Ndis gives us really it's one system to fit all, so trying to find that individual pathway in there is really really hard. As workers, we need to be flexible. We need to be able to think outside of the box. Something I'd really like to highlight is that at times, as workers, we don't rely enough on families and carers to be our allies. We need to advocate family and friends and carers are your allies. They know so much information about the consumer because they know them best. They spend most time with them, so they can just be so much assistance to you.
Speaker 5:And I know we've spoken before, but one particularly hard aspect of the journey you've had with Josh and for him is getting the medication right. Do you want to talk a little bit about that journey with getting that right and advocating and what you had to come up against?
Speaker 3:So originally we were in the youth mental health system and then that turned into the adult mental health system. I think something that still takes my breath away can be the stigma in mental health, particularly with young people. Something we came up against with just even families and friends was people's opinions that they felt that we needed to know. We needed to know what they thought of everything that we were doing. I think with mental health, the hardest thing in this space, when someone is really unwell, is there's no guideline to how long it's going to take to recover. There's no guidelines or sure fit medication such as antibiotics to fight infection. It's finding the right one that fits.
Speaker 3:Josh was really sensitive to medications and he was really treatment resistant. So we had five, nearly six years where in so many ways he was lost. He was so tormented by his symptoms, by auditory and tactile hallucinations that were happening for him constantly, that he was just tormented. He really shut down. When he did manage to sleep, he would often have psychotic nightmares so he would wake up screaming. So we felt in so many ways that he was lost and we weren't sure if we were going to get him back. The other thing is he did work so hard in his recovery. He tried every medication. He did everything suggested to him and just never gave up on that. But unfortunately he would have all the side effects from medications but nothing would touch the side of his symptoms.
Speaker 3:As this went on, I started thinking more and more about whether clozapine would be something that we could possibly try, especially when his care team started talking about well, maybe we should go down the avenue of trying ECT. That that might be something. There's a lot of concern about saying someone's so young and clozapine, when it's such a medication with so many known side effects. There's also a lot of protocols, so we had to have very significant trials of other medications. That went on for many months to to just make sure we were doing the right thing. But during this time, this was also time that Josh lost, where he just stayed in that really unwell space, suffering. So it was really trying to balance all of that. And then when we did trial, start the trial with clozapine, it had to be very, very slow because it does have a lot of side effects and it had to had to be done in hospital and then it had to be done in a continuing care unit. It's certainly not something that any parent or care team would do lightly, but for him it was our miracle in lots of ways.
Speaker 3:So for five years for us it was really um, we felt that we when I say that I felt that we'd lost Josh. He was so sort of blunted in effect, he couldn't smile, he couldn't react, he lost his reactivity. This is a boy that had always been really cheeky, a real larrikin. He'd light up the room with his sense of humour and he was honestly just existing. Clozapine has given him that back when I say he studies now and he's got a job that he loves, he's got this life. He's got that reactivity and joy back in his life and we're really grateful for that.
Speaker 3:But I think the role of carers in mental health is that we never give up advocating and fighting and pushing, and this doesn't have to be done in an abrasive way, but it's sometimes it feels like you are banging your head up against a brick wall and you just have to keep going. And we were told many times to just accept that. Maybe this is baseline for Josh. But I knew that this, this was not a life that Josh wanted and I really don't think we would have kept him here if we hadn't have kept pushing.
Speaker 5:So, cheryl, I guess for people listening who may not be aware of what clozapine is, can you explain a little bit about that? Why was it hard to be able to get someone on that?
Speaker 3:Well, clozapine is an antipsychotic medication that does have lots of side effects on the body. It does require compliance by the person on it because it's monthly blood tests. It's a medication that you can't stop suddenly or you will end up in hospital. It can affect the heart so many long-reaching effects that have consideration, so at times that won't be suitable for the person that you are looking at. But also, as a worker, I had seen some absolute miracles with clozapine. I remember years ago looking after this young boy and he always had his head down and his hair in his face and honestly I couldn't have even told you what his face looked like because, yeah, he would just have his head down, rocking in the corner and Clozapine was his way back and what emerged was this amazing young man who was creative in so many ways. He was a singer, he was an artist and he honestly came back before our eyes. And I'd heard of other stories, I'd done lots of research, I'd worked with a lot of consumers that Clozapine had worked so well for.
Speaker 3:I think Josh's age was a huge consideration, that it's not something at 21 that would be the medical professional's choice, because I think in lots of ways, where do you go after that. That's the thing. Should we save this for later? Do we try it now? And look, there was a lot of stigma.
Speaker 3:When we began the trial I even had family members who had some sort of I think they'd probably done some doctor googling and looked at Clozapine and they were ringing me and just going ballistic that we could put him at such risk physically and really not understanding that he had no quality of life and that fighting for him to have any life was where we were at.
Speaker 3:And you know we were desperate when I touched on a little bit before. But I honestly just don't think Josh would still be with us if this hadn't worked, because he was tormented. He got no respite from those symptoms, it was day and night for him and he was completely shutting down and his thoughts of suicidal ideation were increasing. And, as a parent, nothing prepares you for when your child doesn't want to be here anymore. I mean, I don't think anything prepares you at all for this journey with your loved one, but certainly to know that they don't want to be alive anymore makes it. We have to try everything we can to keep him here and we were willing to try anything, and this, of course, was all with his consent too.
Speaker 5:And clozapine isn't something that you just hand over and you take it. Can you talk about the part that you know you mentioned? There's specific clozapine nurses. Can you talk about the role of that in Josh's support care team?
Speaker 3:So when you're on clozapine it's a lot more of an acute care team that you'll have involved with you. As I mentioned before, it's those monthly blood tests because depending on the blood levels, the dosage of clozapine changes monthly. So part of Josh's care team, as well as being under a psychiatrist, he's also under a clozapine nurse. So they're in partnership in the community.
Speaker 5:Over the years. So Josh became unwell when he was 16, he's now 30. So it's a few years now. What is his care team looked like and what have been some of the wins? You know the things that have really worked.
Speaker 3:We've had some absolute champions over the years that have gone over and above. They've been really flexible and thought about outside the box about how do we make this work and at one stage that was organising Friend IS to be with Josh of a Nighttime All different creative ways. We started in the youth mental health system Look, they're amazing for Josh at that time and then we transitioned into the adult mental health system. The wins for us were certainly starting Clozapine that was amazing. The other wins were when Josh was involved in the youth mental health system with Headspace and the Discovery College. He became really interested in peer work so he did some study there and was hosting some sessions and just to see his confidence and independence grow in doing that and just flourish was amazing.
Speaker 3:I think when it's such acuity it's really important that there's good rapport between the consumer and the people that are caring for them, because it's got to be honest conversations and being on clozapine is something that does really control your life. It's really hard. So if Josh wanted to travel overseas for two months, that would be really hard to manage with dosages and blood tests and all those sort of things, and also taking that amount of medication into some countries is a really huge thing. He's a young man of 30. He can't drink excessively. He's really had to adapt and be willing to give a go. I think it's one of those medications that it can be an absolute miracle that the person on it's got to be willing to make a go. I think it's one of those medications that it can be an absolute miracle, but the person on it's got to be willing to make the sacrifices to stay on it. As I said, it's not something you can stop suddenly. You will become very unwell. You'll end up in hospital.
Speaker 5:And Josh has gone from being a teenager to now a man. How have you found the balance with working with your son's support people? How flexible do you have to be? How did you have to learn that you know you've got to push, then sometimes you've got to ease off and I guess, working with Josh about that.
Speaker 3:We learned very quickly that care teams would often just discuss everything in front of us. So with talking with Josh, we just came up with a way during his appointments. You know, no young man wants to talk about their sex life in front of their parents or to have embarrassing questions asked in front of their parents and they're not going to answer honestly, they're not going to answer openly. We learned very quickly to sort of step in and step out of appointments and that's something that's worked really well for us. I think too, as Josh's independence has grown, our need for advocacy has lessened. At this time he's got an amazing care team, but at times where there's gaps it does increase.
Speaker 3:I can see it's so dependent on the rapport that he has with the people that are working with him, and if he's happy and if he's feeling heard, the amount that he needs to lean on me has lessened. But it can be really difficult. As parents our hope is that Josh will have a full and meaningful life that is defined by him, and as a 30-year-old we want it to be a life of independence that he enjoys, that he's in control of. But at times he's not heard and that's when we feel that we have to advocate. Sometimes it's been continually trying to find a good GP that understands him. It's been trying to find workers that understand that therapeutic relationship and what that can look like, and they've got to have the knowledge and expertise to do that. So I think if you find the right people it's amazing. But don't give up. If they're not the right people, keep looking.
Speaker 5:What does Josh's care team look like right now?
Speaker 3:So at the moment Josh's care team. So there's a consultant psychiatrist that he sees monthly, then he sees a registrar and he sees a clozapine nurse and a case manager. Most of his appointments now are monthly. He's also got to have blood tests to go to those appointments. But then he has the NDIS side of things as well. So he's got the support coordinator and he's got two main workers at the moment that are with him for a combination of hours that works for him during the week and it's the supports that work for him. Now, what kind of supports.
Speaker 5:Does Josh have that for Like? Is it what he feels he needs at the time, or are there certain things that do require that? Mental health support worker?
Speaker 3:At times it might be going to appointments that he's feeling quite anxious about. Psychology was a really big thing when Josh was so unwell. Psychology wasn't something that was appropriate for so long, so really that's only been something in the last few years and he can feel quite a lot of anxiety about going to these appointments. So having a support worker take him and bring him back from those appointments has been something that's really helped Josh, and also sometimes to the clinic as well. If, for whatever reason, I'm not able to attend appointments, having a support worker go with him has been huge. Josh's current support worker has really worked on some of Josh's interests. He's loving bushwalking and going to the gym and often that's what they'll do together and that's just been working so well. Josh loves it and it's really helping bridge those gaps. These aren't things he'd do by himself. He'd struggle to do by himself. He doesn't drive, so just being able to go with someone has been life-changing for him.
Speaker 5:You've got three other children. Josh is the eldest. Can you talk a little bit about what it's like when you've got a child that needs so much attention, understandably, but you've got other kids?
Speaker 3:So when Josh became unwell so unexpectedly, it became a tag team between my husband and myself someone with him being so acutely unwell, One of us was with him 24-7. We would tag team each other. So it was about protecting him, protecting our relationship, which was falling apart at the seams by the stress of this, but also about protecting our other children and was about and when I say that it was about protecting their rights to be kids as well. I didn't want them to be pseudo carers or have their relationship with Josh pathologised. Our dream was that they would stay as close as they were and get through this, one of the things that we did. Well, I'm really open with the fact that I've had a huge amount of counselling and a huge amount of grief counselling. When this happens to someone that you love, there's so many layers of grief when we especially around milestones. I mean. Something that just comes to mind is Josh's 18th and 21st birthdays, which are usually such huge celebrations. He was in hospital for both of those, so the celebration was quite different. Some of his friends are married and saying to have kids now or buy homes, and Josh's life looks a little bit different. So I just needed to process that myself and that was around my hopes and dreams and sadness around that and working out how do we have resilience to keep going on this journey. But this was also something that was hugely beneficial for my kids.
Speaker 3:So Josh's siblings had a lot of psychoeducation when they needed it. They had their own counselling and supports when they needed it, and we've had some family counselling that I'm so happy to report that I honestly think, if anything, it's made us closer. The kids all have a great relationship. They spend a lot of time together independently with us and there's lots of laughter. Their favourite thing is to laugh at me, so that always shows a good, healthy relationship. They're certainly not scared to mock their mum and dad.
Speaker 3:So I think it was about looking at and the hardest thing I felt like I was constantly pivoting and look at times I felt like that hamster on the wheel because we both had to try and work to financially be able to survive all of this. Someone had to make sure everybody ate. Someone had to make sure that the other kids had a mum and a dad accessible for them too while we were doing this, Because at the same time they also were going through VCE or school or university. So it was a lot of pivoting, a lot of flexibility and a lot of tag teaming.
Speaker 5:I guess, as we're wrapping up, what is one or two things that you really would love people to take away from this discussion People who work in the sector, professionals as well as carers this is a really, really valuable conversation, but, in particular for the people who are supporting your son or supporting other people, what are the main things that you want them to hear?
Speaker 3:I really feel strongly that recovery is always possible, and this is defined by the individual.
Speaker 3:It doesn't necessarily mean a life that is symptom-free, but it's about a full, meaningful life that they love and that they want to live. So what I would want to say is you know, don't stop fighting, don't give in, for the workers in the room too. At times, families, friends and carers aren't welcome in a care team, but I'd really like to encourage you that they can be your greatest allies, because the expertise that they can bring about the person and to help build relationship about the people that they know best, they can just be the biggest asset to you. Advocacy as a carer, as someone caring for your loved one, is the biggest thing that you'll ever do. We do keep finding, we do keep pushing. Don't give in, don't give up. I think with the NDIS, we've got one system to fit all, but as workers we need to work out how can we tailor this to the individual, to meet their needs, to have their supports covered. When we look at family and carers, if we can consider supporting the supports of our consumers, we get best outcome for everyone.
Speaker 5:Cheryl, I'd like to get your thoughts about. Psychosocial disability is not understood among the public, but even I've heard people say that even professionals don't understand it and they don't understand the impact that it has on a life, that it is incredibly hard and it presents a lot of complex barriers. We've spoken at the Complex Needs Conference. This is all about people who really need our help and they're on the margins. There's a lot of things going on. Why can't the sector and, I guess, society as a whole? Why is it so important that we don't say this is too hard, this person's too hard, they're beyond help?
Speaker 3:The most important thing is that we remember we're talking about people. We're talking about someone's life. Sometimes that person is someone they don't know what they want. Sometimes they don't have people to advocate for them and often they're not heard. So it's about finding ways that we do make that happen. We don't have people to advocate for them and often they're not heard, so it's about finding ways that we do make that happen. We don't give up.
Speaker 3:Recovery is possible, as defined by that person. And I mean, look, I'm someone who's worked for many years in mental health and we have had a number of people that we've worked with that were deemed too hard or they look really, really terrible on paper and you're almost fearful or dreading meeting them. And then you meet them and they're nothing like that paragraph about them. It's about not forgetting we're working with people and they deserve to be fought for. We need to be creative in our delivery, we need to be flexible, we need to be not scared to work outside the box, but I think our story with Josh is a really good example of not giving up and not settling. We're encouraged many times to settle for the fact that this half-life he had, was it that this was baseline. It wasn't going to get any better than that, but you don't give up. You keep trying. Families and carers, friends keep trying. Families and carers, friends keep advocating.
Speaker 5:Don't give up, were you told that by a few people that you know, maybe this is as good as it gets for Josh. And what was it that made you think, no, no, this is not going to happen.
Speaker 3:We were told this many times over the years, where we tried different antipsychotics, we tried different combinations of medication and nothing was making a difference. We were told that this, honestly, might be it. So we just needed to accept that and move on. I 100% refused to do this. I was not going to give up. I became this person that researched and read. I spoke to every clinician I knew and every health professional I knew. I knew there had to be more and I just refused to give up. I'm going to fight for my son to have the life that he deserves and to fight for him to come back.
Speaker 5:Cheryl, it's been great talking to you. You've just got so much valuable experience and you share that as well in your work. I just want to thank you so much valuable experience and you share that as well in your work. I just want to thank you so much, and also to Josh, because he did give permission for you to talk about this. He's very supportive of that. Just want to thank you so much for sharing your experience. Have you got any final thoughts?
Speaker 3:I just wanted to say that Josh did give his full consent and permission for this, and we've actually done sessions together too for health professionals, from the side of the consumer and the side of the carer.
Speaker 2:You've been listening to Get Real talking mental health and disability, brought to you by the team at Irma 365. Get Real is produced and presented by Emily Webb, with Carenza Louis-Smith and special guests. Thanks for listening and we'll see you next time If you've been affected by anything discussed in this podcast.
Speaker 5:You can phone Lifeline on 13, 11, 14 or go to lifelineorgau.
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