Francis Lynch: My name is Francis Lynch. Thanks for joining me on the comments and musings podcast in this episode. I’m talking to Matt Jackman and Harmonie Jackman, brother and sister, who have both been experiencing the lengthy lockdown periods in Melbourne during two waves of COVID-19. Matt and Harmony both live with bipolar and discussed with me how their support services have adapted to the changed circumstances this year. So welcome, Matt, and Harmony, thanks for joining me on the comments and musings podcast. I’m talking to people across the community, health and aged care sectors, and I’m also talking. I’m really interested in talking to people with the lived experience of using services and their views on how the service system has coped. During 2020 and the experience of COVID-19, we’re recording this in October. So we’re quite a few months in now and we’ve experienced a lot of changes this year. I’m wondering how COVID-19 has impacted each of you.
Matt Jackman: Hmm, I can kick it off, Francis. Well. Both Harmonie and I. Are service users. Of the the public mental health system and the national disability. Insurance scheme as well. I think the. I think I mean how many can speak a bit more to the public mental health system but. I think the NDIS has has struggled to adapt. I think with a. Shift of to services being all remote. It’s been very. Difficult to gain access to my support coordinator, who really has supported me in both accessing different services with my plan, but it really has been kind of a coordinator of my care. And a bit of a therapist at. Times as well. And I found that that supports really. Really. Yeah, really struggled in terms of being present and being available and I. Think that that’s. Due to his demands increasing as well. You think you think? That having providing remote services would mean that that have more time, but I think that due to COVID everyone’s issues and stresses and needs have escalated. Which has meant that people like my support coordinator have meant that the demand has increased it. On his services as. Well, so. It’s. Yeah, it’s been unfortunate that that’s been the case, but yeah, that that’s been my experience anyway. With the NDIS so far. Although I have been lucky in that my support coordinator, my support worker, has continued to come out to the House and see me. Yeah, so that’s been that’s been a real blessing.
Francis Lynch: OK.
Matt Jackman: It’s like he comes out three times a week. But all other services, you know, occupational therapy, counselling, it’s all removed. It’s all been moved to in a remote environment. And and there’s been a lot of delays in accessing services. You know, 3-4, 5 weeks to wait, which has obviously been very frustrating in a time of crisis and and you know. Mental health escalation, really. Yeah.
Francis Lynch: Do do you think that those service providers were at all ready for this type of challenge?
Matt Jackman: Oh, absolutely not. No, absolutely. I don’t think anyone was. Ready for this? Sort of? Change, I think how health health was notoriously. Health and disability, you know, community services are notoriously bit conservative. I think when it comes to like technology and change, you know big systems change and I think it’s really shaking up the health service system. In in the telehealth model, which has been talked about for over a decade. But at this this. Crisis has really brought that approach on.
Francis Lynch: But yeah, so so how many you you’ve been using the public health system? Is that different or is it similar to Matt’s?
Harmonie Jackman: I’m similar to match experience but with with my. Yeah, I see my support worker two days a week and obviously I’m pregnant and I’ve got the hospital and everything and my my main concerns is that more than the mental health system, it’s more. What it is but. With pregnancy as well, with like everything’s changed. You know, like your, your partner’s. Not allowed to. Go in and and find out the sex and just everyone’s going. Know and yeah, so back to the mental health. Yeah, it’s it’s been. It’s been challenging being at home with you know basically no no one, no support around or anything and just escalation of anger and everything. And I think everyone at this time is just getting really cooped up together. And therefore would not love and, you know, care about just getting on your. Nerves and everything and. It’s just it’s frustrating. Really frustrating.
Francis Lynch: And and you said that you’re you’re pregnant and so do you. Think that that, that. Support around your pregnancy has that been? Do you? Do you think that you’re going in and seeing people less than you might have otherwise? I know it’s hard. To tell maybe, but.
Harmonie Jackman: Yeah, it’s, it’s, it’s really, it’s the first time I’ve had a had a baby, so. It’s it’s completely changed, you know, all the courses to learn how to do everything is is all online. You you can’t see other families, you know, it’s just. For us, really, because this is the most important part of someone’s life, you know?
Matt Jackman: I think even things Francis like Harmony was saying at the clinic the other day, there are all these mums in the in. The reception area.Yeah. No, no. Dads. But someone, someone got told that they have to have a C-section in front. Of the entire reception. By one of the. Workers. So there’s that sort of stuff going.
Harmonie Jackman: Yeah, there’s no rooms available, so I. Just went and told this poor. Young lady, that obviously you know. She’s like, can I pull one at least? And they’re like, oh, you. Know yeah you can, but it has to be here in front of everyone. You have to decide right now. And I was just like, this isn’t. How it’s meant to be, you know?
Francis Lynch: No, that that’s it. It sounds as though that in itself would be, you know, could create a level of stress and anxiety or, you know, just having to be in that system at the.
Matt Jackman: Yeah. And on top of that, half he’s been, she’s living on her 6th floor apartment in public housing, has been having to deal with the Department of Housing and and. And that’s been a real struggle in terms of, you know, being and being able to. Be moved to a. A house that’s accessible to someone. That’s I’m pregnant, and that’s been a real strain in in trying to access that support and move move homes in the public housing system, which is already as we know under great strain at the moment. But I think even more so in the current situation where. People have had to be. Housed by the. Government through their, you know, policy changes so. It’s a really. Tricky time.Across board.
Harmonie Jackman: And that’s the thing that’s going on right now. All the hotels that are being taken up by all the homeless people and now now they’re cutting all the funding and everything, everyone’s gone up into this rampage. What are we gonna do now? We’ve had all this money for so long, and then, you know, it’s all. It’s all going to go and then it’s going to be worse.
Francis Lynch: So so have you been able to get? The the sort of. Outcomes around housing that you need.
Harmonie Jackman: No. So we we applied when I well not when I first found out I. Was pregnant, but for a. For a change of mood. And it’s been five months now and we’re just waiting for a house to. Pop up but it’s. Like, no matter I’ve I’ve seen all the letters from my therapist, my social work, you know everyone. But it’s a matter of just finding somewhere, because there’s so many people right now that need somewhere. That it’s just. Yeah. Still might.
Matt Jackman: Yeah. You think being pregnant would be a priority, but that that just shows you how adire the system is at the moment that you have to wait six months now for public housing. A move, yeah.
Francis Lynch: I suppose to go back to. How the mental health system has been coping at the moment. Do you think? That the services are. Listening to to. You, as as people who use the services and. Trying to respond to the ways that you want to be supported or.
Matt Jackman: I think the clinical system in general doesn’t really listen to consumers because it’s based on a medical model and they listen to medicine and medicine’s all about risk and symptom management and, you know, hospitalisation and medication as a primary treatment means and that’s not usually what we want. You know we want. We want a. Home we want. Healthy relationships, we want employment, that’s not discriminatory, we want study and education. And that’s understanding of our diverse abilities and usually the public mental health system doesn’t have control over those intersectorial systems. And their focus really is on on, on risk and I. Think I know I. Know for harmony. I mean, she can speak to her, but she often doesn’t feel very heard by her clinician with her public. In her public mental health service and I know headspace really don’t have much knowledge or support around pregnancy, and often that has to get referred. So but I don’t know if you wanna speak to whether you felt. Heard by, you know, your public mental health system.
Harmonie Jackman: I think I think they’ve been, they’ve been pretty good with me, obviously, yeah, being pregnant and I have to keep saying well. I don’t have to. Yeah. So they’ve been pretty good with me like I’ve, Had a few. Like food parcels and stuff dropped off to my house and, like, get regular. Falls every week, but it’s not the same. As you know, it’s not the same as going in and seeing them having a. In depth comment and it’s. It’s all the same thing, really. You’re just talking on the phone. You may as well. Be talking to your. Dad or something?
Matt Jackman: You know, I guess outreach has changed. As well and that. Harms has always had the an outreach service with their local mental health service system, and that’s obviously changed, you know, with not not not coming to the home. And it’s a different sort of accessibility and a. Different sort of support when it’s via telehealth.
Harmonie Jackman: Yeah, I feel like I don’t have to. Say as much because you know it’s. It’s just like, yeah, I don’t have to say what I what I would normally say to her because it’s just over the phone. It’s not professional. Or anything. It’s it’s.
Francis Lynch: OK, alright. So does it feel less perfect?
Harmonie Jackman: I feel like I. It’s not professional at all. Giving someone a phone call. Like it’s just. Yeah, I wonder.
Matt Jackman: If Francis as well, if it’s around trust and and not having that relationship in person, there’s a level of safety that comes with that interaction. When you’re with someone in, in, in, in presence. Don’t over the phone and that’s that. That, that trust. And that safety is conducive to sharing. And and to kind of going more in depth. Where is that over a telephone call? It’s often very anxiety provoking for people as well. I know for me I can’t stand phone. Polls and and it. Probably it’s just more conducive to having more shallow conversations about your well-being and what’s going on for you when. It’s over the phone.
Francis Lynch: So, Matt, you, you mentioned that you’ve you had a support worker coming into your house three times a week. I’m I’m assuming that that person has to use some PPE. Has has that even though that person is using PPE, does that presence, as you say, does that still make up for the fact that you’ve got this, you know, barrier of the PPE?
Matt Jackman: Hmm. Oh, it’s a massive difference. It’s a massive difference. Just having I mean. So they’ve been a very isolating experience.You know, I live with, I live with house mates. I’m lucky in that regard. I don’t live on my own. I’m also not part of a big family unit, whereas a lot of households. Have that support. Are part of a larger family system. Our family is very segmented. And and broken across Melbourne, you know we’re. Kind of in very different parts of Melbourne. So I think absolutely it’s just been so lovely to have someone come and continue to build that relationship, just be that crutch, that crutch, and that support three days a week. I mean, it’s been a godsend. Honestly, I I think I would have been in hospital of which I’ve been in hospital, you know, through the last four years in winter, I think I. Would have gone back to hospital. And have that support. Just in terms of yeah, connexion and setting goals and keeping me motivated at home all day, it’s been essential.
Francis Lynch: No, that’s that’s good to hear because I know. You know, a lot of service providers have really struggled to be able to get people to do home visits or not not to do them, but that you know that the risk, as you say, you know the risk is such that people are saying, well, you know, the physical risk of COVID is higher than the risk of this person. Francis Lynch: Not getting the service face to face and that’s a tough one. And but what clearly what you’re saying is, is that that’s been so valuable to you in terms of actually being able to physically have someone come in? To be able to to keep building that rapport, that relationship and benefit has been really positive for you.
Matt Jackman: Absolutely. Yeah. I mean, we both, you know, we both have. Over 10 hours a week of. Support work? I mean I couldn’t. I couldn’t be over the phone, you know, for 10 hours a week or via zoom for. 10 hours a week. So in essence, our our services would would actually not be used that we’ve been provided with and assessed for it. If it was all telehealth. So we’ve been lucky in. That regard and and harms is to say harmony has. The same support work.
Francis Lynch: OK, I think you’re absolutely right. Because I was talking to the the CEO of a disability support agency where they were saying that a large. Part of their. Work had dried up, particularly in the first lockdown because participants were feeling unsafe with people coming into their homes so. But clearly what you’re saying is, is that that the value of still having someone coming in is is just has been really important.
Matt Jackman: It’s been more important. Because of how isolating and disconnecting the experience has been, we’ve actually needed someone to come into the home more than ever because we can’t essentially leave the home or our community. So in in, in some ways it’s attempted to the the very need of being disconnected and and not being able to move around and being restricted. Have someone come to you so I think. It’s really on the flip side, it’s been absolutely essential given the change in circumstance.
Francis Lynch: Yeah, I mean that’s that’s really important to hear. And I think you know. It’s a, it’s. Important that I hear that from somebody who has a lived experience of receiving these services. Because that’s clearly a learning for you. None of us have gone through this experience before, so you know we’ve we’ve got no no road map as as such so. Do you think there’s? Other things say, harmony, that you’ve learned during this for the last six months about what’s worked or what hasn’t. Worked for you.
Harmonie Jackman: Which worked is getting my hour. Of exercise everyday you. Know going to the shops once a day. This time has been really stressful and everything, but it’s also brought a lot of people together like I think by everyone being so isolated, but also in the same boat, we’re all experiencing it together. So you know, yeah, we’ve all done it together. So no one’s. Worse than our, I think I think as well.
Matt Jackman: Harmony is connected with a lot of old friends. Yeah, Harms had been through a lot of trauma in her adolescence and had a lot of disrupted schooling, and I think this time, along with obviously her pregnancy. But I think being disconnected, you know, universally that’s. Brought a lot of her old. Friendships and Connexions back together.Which has been kind of a a nice yeah change that’s been as a result of everyone being disconnected and moving online.
Harmonie Jackman: I’ve always been a big social media freak. I think as well like using. Being able to. Use. We’ve got a a good creative support coordinator with our NDIS. And even though it’s funny, we’re able to see our support worker in person, but any clinicians or people that are have a higher qualification won’t come to the home, but both from the public mental health system and the disability system. And I think that, but our support coordinator, you know, offline has been able to use our funding. Creatively. So harmony, you know can access seeing. You know our family therapist or relationship counsellor through some of those funds, which have been kind of essential and and vice versa for me, you know, I’ve been able to use my funds a bit more creatively to attend to some of the needs because we know that in general, the NDS doesn’t really is not a very accessible service system for people with psychosocial. Ability. Yeah. So it’s really been essential that that our services, our service providers have been able to use that funding a bit more creatively and and kind of advocate in spaces where really they’re not supposed to be advocating. So that’s been, I’ve noticed that that’s been a change during the COVID situation because of the crisis, there’s. A bit more scope for creativity in using funding and services.
Francis Lynch: And and do you think that that that has been led from sort of like the support coordinator level or have you been advocating as well yourself to sort of gain that flexibility?
Matt Jackman: I think it’s a bit of both. I think it’s a bit of both obviously being, yeah, I’m, you know, professional in the field as well.
Francis Lynch: Yeah, and.
Matt Jackman: So I think that, yeah, I. Think that absolutely I you. Know I’ll put the heat on the support coordinator. You think about some decisions and and exercise the the the package appropriately. Yeah. And harm harmony. Vice versa. You know, you’ll you’ll let our support coordinator know. And our support worker know, won’t you, you know. If you’ve got.
Harmonie Jackman: Yeah, of course. They’re very attentive. Yeah, sometimes not so good. Yeah.
Matt Jackman: Oh no, I was just going to say we’ve just. Had issues with yeah. Accessibility with our support coordinator and and a a more broader issue is just the lack of regulation of all these private disability enterprises with no real accountability. So I think our support coordinators are spending undated with work and it’s meant that his quality and and time for his participants has been very poor, which has impacted on our well-being. But I think that’s. True as well.
Francis Lynch: So so the. Flexibility that you’ve been able to see then through. You you know the way that the NDS funds are. Being used for you. Do you think that that will stick in the sense of people of you being able to maintain some of that flexibility? I know it’s a. Sort of. I don’t know the answer, but you. Know would you hope that the flexibility sticks in the future?
Matt Jackman: Ohh well absolutely. I mean I think the the. Service system supposed to be attentive to our our needs and wishes. And you know, say for instance I I still see my psychologist using recovery coach funding. So it might just mean that I, you know, she’s paid a few more. Hours for her work. But she still acts in a recovery coach function. And that that’s trauma informed for me because I don’t want. To be seeing another person. And and having to share another story through. Someone else and that’s an. Ongoing issue for most of us in mental health. I I think I think that some of the changes that have been made as a result of COVID will stay in place just because we’ve been able to use funding in, in creative and sustainable ways, if that makes sense.
Francis Lynch: Yeah, yeah. So how many? What are you sort of hoping for in terms of the way that the system’s gonna respond to you as a mother?
Harmonie Jackman: I’m. I’m stressing. Uh, yeah, the the only good news is that my partner will be able to stay there through the whole pregnancy. But aside from that, no visitors. Nothing. I’ll be there for 10 days. You know, it’s very poor. Yeah.
Matt Jackman: By by that, she means, Francis said. She has a planned admission to a mother baby unit post her pregnancy so that. Yeah, so that those supports are being put in place and.
Harmonie Jackman: But because of COVID, there’s always restrictions when no one. ‘s allowed to come, you know. It’s yeah, everything’s changed everything.
Francis Lynch: Normally, normally people would come in, I suppose, yeah, yeah.
Matt Jackman: And with with Head Space, she’d had a, you know, perinatal psychiatrist involved as well.
Harmonie Jackman: Quit last minute.
Matt Jackman: Yeah, well, that’s another issue as well, isn’t it? So unfortunately that perinatal so can’t just had, I think, left for whatever reason, so harms has been having to deal with someone. New quite late in her pregnancy. Yeah, which is always stressful. Yeah.
Harmonie Jackman: It’s always hiring to see a new worker and tell them all your life, and then two weeks later they leave and then you get a new one and then another two weeks later the same thing happens and. Very stressful. It’s it’s good to have. Just a solid worker. That knows your story, knows who you. Are knows when? You’re down when you’re happy, when you, you know.
Francis Lynch: So yeah.
Harmonie Jackman: And I do have that with headspace I have. I have a really good worker there. She’s yeah.
Francis Lynch: Yeah. Are you, are you at a point? I know everybody’s different. You know, we’re all going through this COVID experience together, but everybody’s having their own experience. But. Have you been thinking about what it might look for you over the next year or so? I mean, you know, we’re we’re still some time away from getting a vaccine and things will not return to. Normal for quite a while. But are you thinking about what the future looks like?
Harmonie Jackman: I’m just gonna be a stay at home, Mama. Hopefully everything does change quite quickly, but. I think I think things. Will get better.
Matt Jackman: I think in terms of the the service system, I think telehealth will become a much more common part of providing services. Obviously, as we’ve talked about today, you know nothing beats relationship and presence and and physical safety and emotional safety in person with your workers in terms of building that therapeutic relationship. Umm, but I I yeah, I think Kelly Health will be a I think of the future and and hopefully being able to be a bit more flexible and creative with service systems like in different ways of providing services. COVID has shown that we can have mass change and and. Do it quickly. We’ve been a real. Yeah, issue of the mental health and disability system of the past, or particularly the mental health system. So hopefully that will mean, yeah, that our service models look, look different. Yeah. More trust. I think that obviously mental health issues will rise. There’ll be a lot more stress. It harms talking before about, just like the anger and frustration in the home. And that will obviously have an impact on attachment or, you know, children. So I think we will see a whole a whole generation wave of of mental health issues potentially as a result of this experience of stress for people.
Harmonie Jackman: Is there is there a lot more younger kids getting suicidal and stuff and not? Not being able to go. To school and stuff so. That’s really bad.
Francis Lynch: I think you’re absolutely right. And and there’s gonna be a lot of people who either you know, are experiencing for the first time, maybe, you know, emotional distress or mental health issues and and. But for a lot of Francis Lynch: other people, it’s just going to exacerbate what was already there.
Matt Jackman: I completely agree. I mean, Francis, if I can speak very briefly to some of the experiences I’ve had, like I’ve had. A relationship break. Down due to my partner being, you know, quarantined back to Brisbane. And then I wasn’t speaking to my father, and that was exacerbated by not, you know, being able to see each other in. Person I had a. Job loss due to my mental health. I’ve been let go due to my mental health and a government department because they didn’t know how to really support me in that environment. And I had a bad reaction to antidepressants. Some day and didn’t attend. To a call, so these. Are all you know. Very real COVID examples of how it’s impacted our lived experience. And and and unfortunately, how you know, there’s still a lot of prejudice, stigma and discrimination that’s been exacerbated in this environment and that there’s a big difference. I I think between the kind of low prevalence issues in mental.Health and and and kind.Of the more high prevalence, so I think everyone understands anxiety and depression to some extent. And and to be honest, that’s a pretty normal adaptation to social isolation and disconnection. Yeah, but for for people like harmony and I, you know, we both live with bipolar harmony lives with some personality stuff as well. And our brother lives. With schizophrenia and he’s been in hospital. You. Know due to. Drug issues, forensic issues, you know, so COVID exacerbated. All of that. Absolutely. And I think that that we still don’t really understand the differences. I think between the spectrum of distress which has been impacted by COVID.
Francis Lynch: I’ll look for well said and and I think that, you know, there are. I mean it’s interesting for me because I’m on the side of the service delivery side in terms of my work. Work and you know, certainly what I see in the people who are in our teams is, is that they many of them are, you know, really up and down and struggling at times and and better at other times. But it has also for some people who had, you know existing, you know, mental health issues. It really has has been difficult for a lot of them, even though COVID itself might be addressed, you know, as a health issue, as a, as a physical health issue, yeah, the mental health implications or the the sort of flow on the, the impacts are going to to be with us for quite a.
Matt Jackman: Absolutely. And it’s a social justice, you know, COVID a social justice issue as well. And we’ve seen that, you know, different intersections of of gender and race and class have been impacted very differently, you know, particularly, yeah, you know, living in public housing. Yeah. Which again Harms has had that, that experience of it’s been. A vastly different experience. You know, being cooped up in these large scale residential properties with a lot of other people surrounding you in comparison to having your own apartment, you know on your own. So I yeah, I think absolutely. And and I think I’ll, I’ll back to what you were saying about workplaces, I’m not. Sure, workplaces have really known how to best support their employees, as everyone’s been working remotely, and it’s hard to provide that support and and be and have visibility over what’s going on in the home, you know, or what’s going on in the person’s life when you’re not seeing. Them in person.
Francis Lynch: No, that’s right. And and in the same way as it is in in lots of other sort of visual, you know social media or whatever, I mean you somebody can present a good face but not actually be very well. You know, so. So we we we really are trying to work that out on an ongoing basis is you know how do we actually make sure that people are travelling OK and supported and and if they’re not, what do we do, how do we support them and and do that and and Matt your experience is that workplaces don’t always get it right, you’re absolutely. Right and. Look, I’m I’m getting to the to the end and and I’m just wondering is there anything before before we finish up that? You would want to say just about your experience of how the. Service system we might. Have covered everything, but you know is there anything? Else any other. Experiences that that would be useful for, you know, people who aren’t using the Francis Lynch: mental health system to sort of understand. At this time.
Matt Jackman: Look, I think I think on the whole the the systems have attended and catered well to the the changing needs and landscape of social restrictions and the increasing need like I think government has responded well in terms of increasing funding and implementing some of the Royal Commission recommendations quickly and swiftly. So I think that’s been really positive. I think for for the mental health system is really every other system you know. And I think that if we just pull our resource into the service provision of just mental health services, which are predominantly based on biomedical models, we’re not really addressing the social and structural determinants which actually create a lot of the stress and distress. Stores such as. Housing the justice. System. You know, food, you know, a lot of food insecurity. So I think that I I I’m. Yeah, I’m really hoping and moving forward that we see mental health as a broader intersectorial issue rather than just this sort of clinical medical understanding, because I think that. Yeah, COVID has brought about a lot of those other issues in terms of access, so. Yeah, that for me is something that I wanted to spell out, but but also that it it it has responded, you know relatively well in spite of the circumstances so. I’m no harms if. You wanna just?
Harmonie Jackman: What was the point I was trying to make before? Like when I said we’re all doing it together, you know, like people that wouldn’t normally experience depression or having all their freedom and everything. Now it’s all been taken away, so we’re all experiencing it together. So now it’s like we’re on the same boat and it feels like. We’re all one again. I thought, yeah.
Matt Jackman: In some ways, but in other ways, we’re not all the same as well, because we all have different opportunities and access and and resources, but I think harms is right and that it’s it has brought a a new found literacy to mental health. I think we we all have a flavour for what you know, anxiety or fear. Can look like we all have a flavour for what low mood or depression can look like and I but. But yeah, again, you know, mental health, as we know, is a very vast spectrum. That’s not just anxiety and depression. So I think in some ways it’s also othered experiences that don’t fit within anxiety and depression, and anything outside of that is still very much feared and stigmatised and and not understood. So yeah, for better and for worse, I guess is my answer.
Francis Lynch: Yeah. Well, thank you for for your time both Matt and Harmonie today. Look, I I really appreciate your observations Francis Lynch:and and telling me your experiences of how things have been going over the last few months. As you said there, Matt, at the end you know there there are, you know such a a variety of experiences, some of us gone well, some of it hasn’t gone well. The system has been. Adapting and learning, making mistakes but but also trying to work out how best. To support you as as people who who deserve support and require support, I really appreciate your time. Thank you so much for that. And and good luck with the rest of our common experience of COVID over the next few months.
Harmonie/Matt Jackman: Thank you, Francis. Take care. Take care.
Francis Lynch: You too.