Social Work Spotlight - Episode 97: Patricia

Episode Date: November 24, 2023

In this episode I speak with Patricia. Born in Zambia, Patricia has qualifications in Social Work and Social Policy and her experience spans working in government and non-government organisations and co-authoring a chapter of a clinical handbook in adolescent medicine. Her experience as a mother of a child with a terminal illness inspired her to write a book, and she’s now working on a follow up novel.Links to resources mentioned in this week’s episode:Bwembya’s Mother (Patricia’s book) - https://www.amazon.com/Bwembyas-Mother-Patricia-Kasengele/dp/1922920258/ref=sr_1_1?keywords=bwembya%27s+mother&qid=1696657257&sr=8-1Patricia’s interview on Insaka Talk Show - https://www.youtube.com/watch?v=L0lUcUtArVw&ab_channel=InsakaTalkShowClinical Handbook In Adolescent Medicine (Patricia’s co-authored resource) - https://www.amazon.com.au/Clinical-Handbook-Adolescent-Medicine-Professionals-ebook/dp/B00EAIE6EEVideo resource featuring Patricia on supporting teenagers with chronic illness (adult health care overview) - https://raisingchildren.net.au/teens/videos/transition-to-adult-health-careVideo resource featuring Patricia on supporting teeangers with chronic illness (preparing for adult health care) - https://raisingchildren.net.au/teens/videos/adult-health-care-preparingPalliative Care Australia ‘Journeys’ handbook - https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2015/04/Journeys-2010-Section-04.pdfCompassionate Friends ‘Focus’ Magazine - https://www.thecompassionatefriendsnsw.org.au/receive-our-magazineThis episode's transcript can be viewed here: https://docs.google.com/document/d/14memB6GrNutt3PDSKGaO_kN7zstTk8p0ioBWzk0IBRk/edit?usp=sharingThanks to Kevin Macleod of incompetech.com for our theme music.

I begin today by acknowledging the Gadigal people of the Euror Nation, traditional custodians of the land on which I record this podcast, and pay my respects to their elders past and present. I extend that respect to Aboriginal and Torres Strait Islander people listening today. Aboriginal and Torres Strait Islander peoples have an intrinsic connection to this land and have cared for country for over 60,000 years, with their way of life having been devastated by colonisation. Hi and welcome to Social Work Spotlight where I showcase different areas of the profession

each episode. I'm your host, Jasmine McKee Wright, and today's guest is Patricia. Born in Zambia, Patricia has qualifications in social work and social policy, and her experience spans working in government and non-government organizations and co-authoring a chapter of a clinical handbook in adolescent medicine. Her experience as a mother of a child with a terminal illness in the same. inspired her to write a book and she's now working on a follow-up novel. Thanks so much Patricia for joining me on the podcast today.

I'm so excited to have a chat with you about your experience. I'd love to know firstly when you began as a social worker and what brought you to the profession. Okay, when did I begin as a social worker? It was not a straightforward journey to become a social worker. When I finished school, I went to university. I lived in Zambia and I went to a Catholic school. high school, Finnish school, went to the University of Zambia, which was the only university then. I went to university and I was studying law at the University of Zambia.

So social work was not even on the radar. It was not something I even thought about. I was going to be a lawyer. And I was going to work at the International Court of Justice. When I finished my law degree, that was the goal, that I'd go and work at the International Court of Justice in the Hague. That was the dream. So what happened is in my third year at university, my dad sent me to a college in North Carolina in the USA to study.

My two brothers were already studying in the USA. A few months after I left, my parents went to live in Australia. My dad became the High Commissioner for Zambia to Australia. So very excited going to school in America. I went to a place called Bennett College. It's in Greensboro in North Carolina. you know, and I was a bit late, of course, coming from Africa, by the time we got everything arranged and got tickets and papers, I arrived, I think about three weeks after the semester

I began. Everybody had already chosen their subjects, you know, done everything. So I arrived late and I had to go and do my registration on my own. So when I got there, you know, the international student advisor took me, went to register, and I was told that I could not get any of my credits from law school. And out of all the three years that I was at university, they would only take two of the courses, which was an English course and a maths course, I think it was. That was it.

And I was sitting there going, are you kidding? And they said, no. Everything else you've done is irrelevant here if you want to study law. Because in America, they have four years of pre-law and then three years of law school. So that's seven years. Right. And I said that will make it.

10 years I've been at uni and I said that's not happening. I was just like, no, I can't, sorry. And the thing was, even if I did go and do law in America, I would not be able to use that law to work in Zambia or in Australia because it's American law. So I thought, what's the point of doing a law degree which I won't be able to use when I go back?

It didn't make sense. And at that time, they advised me that, okay, for this year, just take general subjects. and then at the end of the year you can decide what you want to major in. So I just sort of like enrolled in whatever classes, you know, physics, chemistry, business admin, computers, whatever, everything.

And I just happened to have some social work and psychology classes as well. So that's how I fell into social work. So when the year was almost finished, the head of social work department came to me and said, Patricia, you're a natural. you need to be doing social work you excel you know you're one of my best students

you need to actually think about it very seriously and at the time I just didn't because I didn't get what I wanted I didn't really care so I said oh fine whatever you know so I ended up doing a major in social work with a minor in psychology and at the end of my degree I finished in about three years

two and a half years and got a certificate of of merit for excellent work in social work. So that's where my journey started. Working with people with disabilities, one of the first placements I went to as part of my degree, you know, in the last year, we did a few placements. And one of the first placements was an early education center for kids with

disabilities. So that was my first time to be thrown into an arena with kids with varying disabilities. And it was very daunting at first. but after a few days, a few weeks, it was like, yeah, I actually enjoyed the work and found that I had an affinity to working with people with disabilities. So that's how I ended up doing social work. It was not something I planned, but it's something that I sort of fell into. Yeah.

And to your knowledge was the way the course was structured in the US similar to how we do it here in terms of you've got your two placements, you do like similar subjects. Since I'd never been to school here, I don't know. But when they did an assessment, of course, when you come to Australia, they do an assessment to see whether, and you give your transcript and everything, see if it's comparable to the social work here, which they found that it was comparable. And so my degree and my subjects were accepted. I did a little bit more. I think I had four placements in one year. Okay, wow.

Yeah. So I had, it was like an early childhood education center. and I worked with people who are disadvantaged in a TAFE, teaching them skills, you know, how to present themselves, how to write resumes and all that. So helping them to be able to set themselves up to do that. And then I worked in a hospital setting with the social worker. And what was the other one? Oh, gifted kids. Okay.

A school for gifted kids. So those were the four placements that I had. Yeah, but I think the one that resonated most was working with kids with disabilities. That's super interesting that there was funding and placements for gifted kids because I guess you would expect that They've got everything. Well, they would have less experiences of disadvantage perhaps, but I'm guessing your experience was quite different once you got there. Yeah, it was. I was surprised as well, but they have so many issues and problems as well, not fitting in.

So they needed social workers to help them to adjust and different programs to help. them find the level that they can work at. Apart from being at school, even at home, what sports they could play, how they would fit in. They felt out of place was one of the common things. So either they went into, they were put ahead with kids who are older and they didn't fit because they were still young. And either they were stayed in the classes that they were with and they were not challenged.

So we were just working with them helping to find a medium where they could be happy. and trying to see what adjustments they needed and what support and the parents what support they needed to be able to help the kids as well. Yeah, I'm probably working with the parents to kind of curb that enthusiasm or expectation for the kids so that they felt like, you know, this isn't the end of the world if I don't achieve what's expected of me. Yeah, yeah. Wow. Okay, so the one that resonated for you most was the intellectual disability working with kids, did that then. inform your first role, what you looked for? So they had different disabilities.

Okay. Some were blind, some had physical disabilities, so there was a range of disabilities. Yeah, right. Yeah. So then you finished uni. It's a horrible time to just kind of feel like, where do I start? I don't know if I'm confident. Yeah.

Where did you start? When I went back to Zambia, I actually got a job in what was called Workman's Compensation Fund Control Board. Okay. It's like a pension scheme. Right. But it's specific to people injured in, well, it would be probably like eye care or motor accident authority. But it's specific to people who are injured on the job.

So it doesn't matter with job. Yeah. So different injuries. Some people are working in mine. Some were on the factory floor or whatever. People who have been injured. So this was a scheme where employers paid into an insurance scheme. And if their workers were injured, we took over the care of that.

So I was what was called a pensions officer. So working with people who have had an injury and cannot work anymore. Or those who have had an amputation or life limiting injury, trying to find them a place where they can be comfortable. If there's anything they can do, finding them work that they can do. But most of the people I helped was different things. Like I got very good at helping people get new limbs. Yeah, wow.

Simple things like that. Or mine is who's hearing was. damaged. So I got to know all about how to make artificial legs and being able to work with the companies who are providing them because we had to pay for everything. So it's really similar to what I was doing with I care. Different sorts of things. I was buying coffins for people who died. I was doing a lot of different things. Working with different companies who are making wheelchairs, who are making different equipment. So purchasing equipment. And even I got to do things like help people make business plans. Because people who, they're going to pay.

I had to sit with them and what is going to happen with this payout so that it's not squandered. What's your next step in life since you can't do what you're doing? Some of the women set up like market stores or open the stand, you know, where they could sell vegetables. Some people wanted a shop where they could do stuff. They could sit down and do stuff. Some people open hair salons. So everybody had a different thing that they could do.

So I had to sit down and do a life plan for them. Where do you go from here? How can we help? With the money you're getting. Some people opted to get the money on a monthly basis for the rest of their life. So it might be a smaller amount, whatever it was, like $100 a month for the rest of their life. Some people opted like, I'll get the lump sum, but we had to make sure what are they going to do with it before it was given up. So they had to have a plan.

So I'd sit with them and write out a plan what they're going to do with the lump sum that they get. So that was quite an interesting job. I didn't know what I was doing from day to day because it was so different. I just feel like for your first roll out, what diversity, what incredible, challenge but also did you ever get the feeling that who am I coming into this I'm so young I don't have the life experience was that ever an issue for you no no I think I might be wrong but I think coming from America everybody had high regard right you know oh she came from America oh she's got an American degree it was like wow you know so yeah it's like whatever I said was like oh you

know credible and I was just a young lady but yeah, it was like a privilege to them to have somebody who's educated, you know, in America to come and work there. And I did know my stuff, but a lot of what I learned went in, so I was able to be articulate and be able to help. And I actually enjoyed their job. I think that was the main thing. And people could see that I actually enjoyed myself.

And I think I found that I'm really good at talking to people at whatever levels. Some people are living in like typical compounds. I don't know what compounds are like, whether you've got an idea of what compounds in Africa are where I had to take like a land rover to be able to go to the places where they lived because the roads were so bad and you couldn't drive a car there. But I actually enjoyed the job. I was actually helping people, you know, bringing them stuff and making sure, you know, whatever they needed, whatever.

And I would like have a plan and identify what they needed to get their life back on track or to a better place than they were. Help the family and help, you know. So I really, really enjoyed that job. And I think I felt, which is surprising, I felt really comfortable and competent with what I was doing. I didn't have anybody telling me what to do. I just sat there and, yeah, jumped off the deep end literally. Did you have any other social workers that you worked with or any really good mentors that helped guide you through?

Not particularly. There was one lady who had been sitting in the position before I came. She wasn't a qualified social worker. I think it's, you know, in those days, people just got a job and they start in, admin and they worked their way up. So she was an older lady. And she showed me the road, like, I was doing your job. This is what I was just holding the fort. And she showed me what was happening and what to do and everything. So yeah. But other than that, then she stepped back and went to do her normal job. And I was her boss. So she would come and, you know, can I help you

with anything? And whenever I need advice or anything, she would be there to tell. That's so lovely. How long were you there for? A couple of years. Yeah. And what prompted the move from there? Well, we moved to Australia. Okay, yeah, significant. Yes. So you joined mum and dad? No, we didn't actually.

Well, we did join them, but that wasn't the reason why we came. Before starting work at Workman's Conversation Fund Control Board, I got married and had a child, and my husband and I, with my son, who was a few months old, went to live in Scotland. My husband went to study a master's degree in banking and finance in Edinburgh in Scotland. So I went with him and over there started working actually as a youth worker for a regional council there. So working on the docks with kids, teenagers and young people.

That was an eye-opener, but yes, it was quite interesting. So very different. So I've done a lot of varying different rows. So these are kids who are out on the streets, drinking, smoking. So it was like in the evening from around 5 o'clock would have them. There was a clubhouse and they would come in and they'll play pool and would chat about life and things. And we could talk to them and try and provide positive role models for them. And also activities in the center, darts, you know, they had all different things happening.

The boys would be playing basketball outside and just hanging out with them. So that was an education for me as well. Yes, because there's this young. And Benet Bell lady wearing nice linen clothes. I had to quickly change what I was wearing and start wearing jeans and sneakers. Yeah. And started working. As I've said, I've loved all the jobs.

Even that job, I really loved working with young people. They taught me a lot, you know, about life and drugs and things. Because they'll talk to you freely like, ma'am, do you know what this is? It's like, no, you know, they'll tell you exactly what it is. Yeah. Yeah. So they gave me an education as well. As much as I was teaching them, and yeah, I enjoyed that as well.

That was in Scotland, then went back to Zambia. I worked for the fund for a little bit longer than we came to Australia. And the reason we came to Australia is while I was having my second child, my mom took my oldest son over to Australia with her because I was having a difficult pregnancy. So he up and went with his grandparents and was living in Australia. And I think while he was here is when my parents discovered that he had a rare genetic, disorder. And it was just a fluke that they found out something was wrong with him. He was a healthy looking young boy. He just had a normal childhood illness. I think he had an ear

infection or something. And it just happens that the pediatrician, they took him to in Canberra, took one look at him and knew what he had because he had worked in the genetics department at the kids' hospital in Camperdown. And he just took one look at him. This is one of those rare one in how many hundred thousand kids have it. And he just took one look. at him and suspected that this kid has this. And so my parents asked us to come as soon as I had the baby, I think she was three weeks old when we came, that we needed to come. We thought we were coming. It was a much needed holiday, but it wasn't. So you didn't know the diagnosis when you came. Wow. They weren't sure that he just, but he needed to confirm it because we had to have genetic

testing. So we came over and two days after we came here, my parents said, look, something's wrong with him and we're going to see a specialist in Sydney. I didn't think too much about it. I didn't know what we were getting into. So came to Sydney, had some genetic testing and yeah, he had what's called MPS2, Hunter's Syndrome. And that's when we thought, oh, maybe what are we going to do? This is big, you know, and it was a terminal in us in those days. So they told us he would likely live until he was 10 years old. So we thought, well, we need to move here so we can give him the best life that we can while he's here and learn as much as we can so that if we go back to zambia we know what we're talking about because we had no idea what it was what the implications were or what his

life was going to be like so yeah while we're here my husband went and had some job interviews and got a job with the bank and yeah so we moved there so that was the main reason what made us move to Australia was mainly for us to learn what we needed to learn about wembia's disease and how to look after him and that's how we ended up in australia What a bombshell. You've just given birth to your second child. It was a difficult pregnancy. You get here and just everything falls apart. Yeah, literally. Yeah. How did you manage at the time? I don't know. I think if you get to know me, I'm pretty resilient now. And my husband's the same. It was just like, well, this is what has happened. So we just need to get on with it. And we need to look after this kid. So he has the best life that he can have. And that was what we wanted for him. So we moved countries just so that he could have a better life, yeah.

Yeah, wow. Yeah. So when did you manage to get back to work after all that? As soon as I came here, I got a job within a few months. The problem I had was everywhere, I don't know how many, I think I sent up maybe 100 applications. The sticking issue was you don't have Australian experience. Right.

Everywhere I went is you don't have Australian experience. And the first job that I landed, which was also quite a funny story, was it with Paraquod in Holmbush. And I went for the interview. The ad said personal assistant. Okay. Personal assistant means very different things in America and in Australia. I thought I was going for a job like a secretary. Right.

But it was more like attendant care. Yeah. And I could type, you know, having been at a boarding school where you learn typing, I could type, I was even saying to them, I can type 30. words a minute or whatever, not realizing that this is not actually relevant. So it wasn't until I was in the interview and they were showing that when I got the job and then I came back and they were showing me what I needed to be doing, what my role was that I thought, oh, it's not actually what I thought it was. Yeah. It was working with people who have been injured in car accidents and have spinal injuries. So it was very different. But it was, all of my jobs have been jobs that I've learned

something from and that have helped me with whatever jobs I had. So actually, even though it wasn't the job that I wanted, it was the job that got me the Australian experience. After that, I could say I've got Australian experience. Yeah, got you over that hurdle. Yeah. So I think I stayed there about eight months and learned a lot about disabilities in Australia. Because We were busy helping people do everyday stuff that they were doing in the office, you know. So that really gave me a good idea of what disabilities are. And with Paracad, they're the ones who are sending out stuff. There was all this equipment and everything.

So I was getting an education about how things work in Australia as well with people with disabilities. So it was a great job. There would have been some transferable knowledge, I imagine, in terms of spinal cord injuries and looking after people after work accidents. There'd be a lot of crossover. Yeah, yeah. So that was one of the first jobs that I had. And yeah, so it got me in the market.

And from there, I went on to work with an agency called Aish, who worked with people and intellectual disabilities. And after that, all the different jobs, you know, Crowell Foundation. Then I went to Eurella Community Services. These are all part of the Challenge Foundation under that week. And, yeah, and I was with Eurela Community Services, which is a service for people, intellectual disabilities. And they ran from playgroups all the way up to group homes.

They had sheltered workshops. They had community access programs. And I started there as a training officer with Crowell. And a training officer training people with intellectual disabilities with different skills, either in the home, they had group homes or in the workshops or liaising with parents and workers. And when they went to work off-site as well, liaising with the different companies that were working with.

And the next job was a branch coordinator, which was coordinating the services of Urella, which they had different services there. They had a car detailing crew, community access program. They had an early childhood education center for kids with disabilities and a group home. So that was totally different as well.

Yeah, so I was there for about six years and yeah, loved it. I was a general manager at Jurela for over five years. you know, it was certainly doing individual plans, strategizing for the company, you know, business plans, all sorts of things. It was really a very varied road, very wide road. And that's where I learned to drive my first bus. I got my LR license, like rigid, so I could drive a 28 seat-up. Wow.

Yeah, so, yeah, I learned a lot of skills from there. So, yeah, that was Eurela. From there, I went to work for Anglicare. Rudy Hill, the Outer West region. I was the deputy regional manager there. So I was writing what they call care services there. So services for people with brain injuries, services for children who are going into child care but had disabilities of providing workers for them. So helping them adjust and stay into normal child care, but with their worker with them to help them, you know, manage the supports and whatever they needed during the day. So they were there with them. And we'll

had an acquired brain injury program, which was a recreational program and other children's services such as respite care services. And we also started KareLink and community options programs. So I was managing quite a variety of different programs. So all this was helping me not only in my work life, but as well as in my personal life. Because having a child with a disability, I was learning what to do at home, what to look out for inadmittedly. You know, you get to learn things about, you know, oh, I'm actually a carer. It took me a while. I was busy running carer support program. And one day it hit me that I'm one of these people I'm sitting here talking to telling them what they should be doing. And I'm one of those. I'm a carer myself. It didn't,

it took me a while that I needed help as well and I needed care. But I knew that's what I needed to do because I was doing it at work. I just had to turn it on myself and realize that I'm one of these people who actually who I'm sending and referring to different services. I am one of those people and I need to look after myself as a carer and make sure my child has the right services as well. So all my jobs were helping with that. That's also quite challenging because you want to use those networks and those resources, but at the same time, you know, how much of your personal life do you want to disclose? Exactly. That's quite a vulnerable position to be in.

It is. Yeah. But in that, job as well. That's when my son started getting sicker. The downturn in his health started. So of course, I had to let the regional manager know that I could leave any time if this something happens. So everybody knew that, you know, this was what was happening. But only him. The other staff didn't know that half the time I was at the hospital all night or whatever. I just came in, did my work, went home, you know. So, but yeah, it was, it was good learning about all the services that were available. So later on when I needed them, I knew where to go. So that That was a big help.

And from there, where did I go next? My life has been running around a lot. From Anglicare, I went to Willoughby City Council as a community aid coordinator. And the reason I left Anglicare was because my son was getting sick and I needed something lighter than what I was doing, you know. And with that, it was just managing different volunteer programs. So linen services, shopping services, that sort of stuff, which was easier. And they were more flexible with time as well. Like I could come in early, come in later.

They were quite flexible. I've been lucky that even working there, I mean, the people, the managers, my managers and all the people there, the mayor and everybody were very understanding of having a child with their disability. If I needed to go, I needed to go. So, yeah, that was a good job as well. So I learned different skills there as well. I learned about different services in the community, you know, shopping buses, whatever. Each job I learned different skills.

And from Willoughby, my son, I think I was there a year, and my son was getting sicker. So I thought even this isn't working because I cannot be running a service with volunteers. And I think at that time, he actually had a stroke and ended up in hospital. And most of the time I make the decision that I'm very pedantic about my work. And if I'm not doing my work to my expectations, I prefer that I leave and find something else because I didn't want. the work to suffer. So I moved and went to Lottie Stewart Hospital to run a volunteer service there. And yeah, I was there for another year, I think. And that was better because it was only, I think it was nine to one. So it was a short day. And when my son came out of hospitals, they would

pick him up from school at once. So he only had half the day. But even that, he started getting sicker. And a year later, I thought, even this is not going to work. Because that's when he was in hostel for such a long time and I thought this is not going to work. I have to find something different. So that's when I applied for a position on a palliative care project. So looking at cold communities, how they used palliative care services. So it was an action research project. I think it was about 28 hours a week and it was very flexible. And I liked it because if I can't work the 28 hours this week because my son's in hospital, then I could go on the Friday and work whatever and the next week work longer hours.

So I was able to sort of be flexible about that and work different hours if I needed to. I could even work up to seven at night if I needed to. When my son was well, I could make up the hours so that by the fortnight they were all balancing out. So that really helped as well. And it also helped the fact that it was a three-way project. It was Maltichita Health, Chronic and Complex and palliative care. So when my son became palliative care and they told me at the whole, hospital, I knew exactly what they were talking about because I was on the team that was going

out. It was a multi-disciplinary team. So I was doing the research using the mountain disciplinary team. So I was sitting in on their meetings, going with them to the houses when they're going to see people at home and in the hospital and everything. So I was part of the team. So as I was writing the project, I was learning. Because I could even see with my son that, okay, we're on oxygen now. I knew what stage you were at because of work. I was learning. the journey people go through when they're dying and when they're palliative care and what services are available as well. So it was sort of a parallel. And I always say that with my jobs, it seemed like each job that I was getting was training me in advance for what was coming.

And people always say, how did you manage? And I say, it's almost like I had the training before whatever was happening to my son happened. When it became palliative care and they were telling me it wasn't news because I knew what palliative care was. I knew what chronic and complex is, you know, and what services are available. I knew that you're going home with an oxygen tank. I'd been purchasing oxygen for people in community options and stuff. So I knew everything.

And I was able to be proactive, like get myself shower chairs and things like that from the community pool before anybody told me, I just saw that, no, you can't sit. You need to be sitting on a chair in the shower. So I myself would go. I knew where the pool was where you could loan equipment. and I could go there and get a loan of equipment and stuff like that. So it really helped.

So that job was, it was a godsend because it helped me look at the direction we're going and know what we needed to do and know what I needed to do, you know. And in fact, somebody was asking, how did you and your family cope? And I said, because I knew what all the services were when the time came, I'm the one who was standing there, you know, telling people, you need to use the sibling program. You need to use this. And I thought, hang on, my kids.

are siblings, you know. Yeah. And I could start noticing and all the things were telling other people that this is what you'd notice and this is what you see and these are the effects if you don't use our service. And I was thinking, hang on, I need to start taking care of myself and my kids the way I was telling other people to do. Yeah. So all the referrals I was making, I was thinking, I need to start actually looking at my kids,

what do they need, you know, and tap into some of the things that we needed, you know. And things like respite. for my son so we could have a break at home. And also I was the one was preaching to them that you can't do it yourself and you need to, you know, take care of yourself. If you fell, then you can't take care of your son. I was thinking, hang on, that's, I should take some of my own advice. So all the jobs I had really helped me to sort of be able to help in my own situation with my kids as well. And after that, the jobs that I got after my son passed away. So the last one I was at was with the palliative care. When the palliative care job, it was a project and my son passed away

while I was doing that. It was a fixed term one, so it was a 12-month one. And he passed away just a few months before the project finished. After that, I got a job with DADC at the Assessment and Referral Center as a regional team leader. So I was managing all the team leaders at the assessment center. So not the ones who are in the metro, but everybody else all around New South Wales. So I was traveling quite a bit and looking after the teams there. Yeah, I love that job as well. You know, did a little bit of it. And within all this, what did I do? I went back to school when I was doing the job at Lottie Stewart because I thought I'm not using my brain enough. And I think I always thought what happens when my son dies and I'm just doing this part-time job. I needed something to challenge me.

So I started doing a master's degree, which I finished about three years later. I did a master's in social policy. And this was while I was working at the hospital because I wanted to see how is policy made. I was quite interested in how is social policy made and working in the field. I wanted to know a little bit more about that. And one of the papers I wrote for that master's degree, it's really funny that you fall into all these things. Because I had children and being in the hospital, being of a different culture, you start noticing things in hospitals. And I started thinking about my kids are black kids. They're going to be living in Australia.

And I'm a black woman living in Australia. And I'd had some experiences in the hospital as a black woman, which later on I came to recognize that it was a cultural thing. I'm an educated person, right? Got degrees and everything. And I went to hospital. And this doctor was talking to me about, they were suspecting I had a heart problem.

I didn't in the end, but they were doing all these tests, and I was collapsing and fainting, and in the end, it was just my thyroid, but it took a long time to diagnose because it doesn't present the way normal thyroid's did. So this doctor was asking me, do I feel like jumping the gap? And I said, yes, I didn't realize what the gap was. I wasn't from Australia. So only later that, what the hell? And he put me on antidepressants.

So they're on high alert now. this was a cultural thing. I'm not Australian. I wouldn't know what the gap was. I thought he meant literally like there's a gap and you want to to close the gap so you feel better. That's what I thought he meant. And I was like, yeah, yeah, yeah.

And he put me on antidepressants. And it wasn't until I went back to my GP. And she said, oh, I've got the report. And I said, this is the medication he gave me. And she goes rubbish and do it in the video. You're not depressed. But that's when I realized that even though I'm educated, there's still a lot of gaps in the health service simply because of culture.

And that's why when I started doing my master's, that's one of the papers I did, you know, multicultural affairs. And since at the time my son was in hospital all the time when I was doing a master's degree, guess what I did? I started working on the EPS, which is the ethnic affairs priority statement. Because in the hospital, I could get all the material from their library because I'd be sitting there with him. He's sick lying on my laps and I could have all.

my books around me and I got, I couldn't go to a library. So I went into the hospital library and got some stuff out of there, Westmead, Children's Hospital. And I thought, at least I can do something while I'm in here. You know, so I started writing about the ethnic and best priority statement because that's what they used to make planning for people from different cultures. And even my other paper that I wrote, I did a comparison of multiculturalism between Australia and Canada just to see what the differences are and how we can improve multiculturalism in Australia. So one of the next jobs that I got I actually went into multicultural health eventually, but in between that I had other jobs.

So in between that, yeah, so from Dadak when my son passed away and I was still doing the degree, I went to work for Motor Accident Authority just for eight months. It was a pilot project. You know, they started looking at people with spinal injuries, injured in car accidents. It was a pilot project. I was there for eight months. And from there, that's when I went to health. And I decided, let me go into multicultural health.

And that was one of the first jobs I got in my multicultural health. And it was a senior multicultural health planning and projects officer. And then I did a few other projects over the next three years. And I also did. And these were all maternity relief. And the next one I got was a multicultural education officer. And the next one was Malticultural Health Promotions Officer. So I was there because I was really interested in the ethnic affairs priority statement

because all health services had to have those, how to work with migrants and people from different cultures. And I thought, we're living in this country. My kids are living here. And after my experience with health, I thought, I need to go in there and see how policies made. And I was doing the degree as well with how policies made. So it all sort of blended in together.

So I stayed at multicultural health for a few years. I was there for three years. and then about four years, I think, after my son died. I loved the job. I was there doing. I was running different projects, multicultural, multilingual services. You know, we were doing all the training and education like for diabetes, you know, breast screening, whatever, taking the women. They were learning about different cultures, training the people who are training the communities, you know.

So loving it, you know, running all these programs, making sure looking at all the health resources and that were coming in. out to make sure they were catering for people from cold communities, you know, and also I'm making sure that everything that the hospital was doing, it was in line with what people from different cultures would be able to access and understand that in the right language and all that. So I was loving the job and doing it and really into it. And then I'm sitting at my desk working one day and one of my colleagues walks in and throws a sheet of paper onto my desk. She goes, Patricia, this is your job. You love it or hate it. I don't know if you're ready for and since my son had died, I hadn't been back to kids' hospital.

Actually, no, Westmead Hospital is just, we were in Cumberland, which was just behind the kids' hospital. And I hadn't had the nerve to even walk near that hospital. I always drove the long way around just to avoid driving past the hospital. So she threw this there, and I looked at it, and it was a job with ACI, agency for clinical innovation. It was a transition coordinator. I looked at the job and I thought, yeah, this is the job for me.

So the transition coordinator works with kids moving from kids services, pediatric service to adult services across New South Wales. And there was three of us. So this job was for the western area, which ran from around Wayong up to Broken Hill, that end the western part of New South Wales. Yeah, it's involved working with clinicians. And I'd been doing a lot of training even with my moucher

cultural role, we're doing a lot of training of staff how to work with people at different cultures, how to fill in the ethnic affairs priorities statement and how to meet it and also how they can work better. So I had been doing a lot of training and I also just finished actually, it was really ironic. I just finished my search for in assessment and training with Western Sydney area health because it was going to be part of my role that I needed to get that and I just finished it and this job actually required it. Because this job involved working with clinicians and training them if need be

in what transition is and how it works and also bringing kids across to the adult hospitals and training the staff in the adult hospitals how to work with the kids with different disabilities. Also making sure that they got the correct care, that they were linked into appropriate services. That was really important. They had the resources and also making sure

the parents had the resources and the knowledge and what was going on and making sure they understood how clinics work, how the adult services work, and meeting them in the kids' hospitals or not only hospitals, but also pediatric services in the community, so that they get used to you and then going with them to the adult hospital in the first few appointments so that they're comfortable and helping them to ask questions and get comfortable and training them. This is how you do when you go in there. This is the questions you ask of things. like that. So just getting them comfortable with the idea that there's a change and also

were there to provide support and advocacy and information as well. So yes, so I took the job and I really loved it and I was there for six years. So it was a bit of traveling, but that was okay. I don't mind traveling. I enjoyed working with all the clinicians going into their clinics all over the place. I've been double in a clinic one day in orange one day. I'll be in a broken hill. I was all over the place, but I loved it and it was really interesting. for me. And I think also having had a sick child was easy for me to identify with the people I was working with. And I was able to give advice on things like if the child is really sick and you go to the clinic, I could identify with how they're feeling and empathize, you know,

appropriately because, yeah, having a child sick in a hospital. And I also found that I had a good rapport with the young people as well. Because kids who are sick, I had had a teenager who were sick. So it was easy for me to have a good rapport with young people, talk to them and make them feel comfortable and, you know, make myself available so they could call me and tell me whatever they wanted to tell me and it was fine. You know, so yeah, it was, it was really interesting and I love that job. The reason I left, my husband got the fourth year, I was with, I was there for six years. In the fourth year, my husband was diagnosed with bowel cancer. and also a few different cancers after that it spread everywhere. So that was a turning point as well.

But as I said, with everything, I had been in the cancer care unit. That was where I was based when I was doing that project with chronic complex, multi-culture and chronic. So the minute nobody needed to tell me when he put the x-ray up, my exact course was shit. Yeah. Because I looked at that cancer. I knew he wouldn't have known what the hell was looking. But having been with kids in hospitals and, you know, being in the cancer care, we used to put those up and talk about it.

And I thought, well, that's big. Yeah. I was like, wow, no, you know, this is late stage. And, you know, I knew. So that's why I said everything that I went through in my life, people always asked me, how did you manage? I already had the knowledge and the training before everything happened. I could look at that x-ray and the doctor looked at me. He knew I knew.

Because he knew I worked in health and he knew what job I did. And I was like, yeah, yeah, that's bad. But I didn't say anything. But so all these things helped. And that's when I decided after I tried working in that job. You can't travel and be all over the place. If you've got somebody who's sick, it didn't work for very long. So I think after about a year and a half, I was like, no, I've got to give this job up.

As much as I love it, I have to. That's when I sort of took time out three months long service. and yeah I thought I can't go back there's not going to work so that's when I found a job with i care and i explained to them even when I started that this is a situation my husband's got cancer i may need to go out any time but they were like quite happy with you know well we'll deal with each thing as it happens and as it happens they did they were just a wonderful place to work for you know i can't say enough about you know work life balance was great when i needed time off when I needed to lessen the number of days I worked, it was fine.

I went down to three days a week. That was fine. So I knew that I needed the one day I could work from home because I knew he had an appointment that day, whatever it was the Thursday for his chem or whatever, they were quite happy to say, okay, I work from home that day, take him, and then come back and continue working. So everything was adjustable and flexible.

So that was really good. In fact, I was the first person, you know, before this working from home started, I was the first person my boss said, we're going to start this. And I was given the first laptop. And everybody was like, what? You're going to work from home. And I was picked in our team simply because I had a husband who was sick and it would be

beneficial for me to work from home on the one day that he needed to be at his 8 o'clock, whatever, Westmead appointment to get his radiation and be home in half an hour. But I was able to do that because I could start, you know, the flexible hours, I'd be home by 10 and I could work from home. Yeah. So I was one of the first people to get a laptop, the first person in our team actually, to get the laptop to be able to work from home. So that was really, really helpful. But again, even with all the people I was working with, because even at I care, I was working a lot with kids as well. Most of the people I worked with were kids, but I was also working with other age groups, which I'm able to, because at Anglicabwe, I worked across all age groups with older people as well.

And with Willoughby, work with all the people as well. So, yeah, I had the training. So coming to eye care, I had not only experience as a professional in my work, but experience as a carer as well. So caring after somebody who's older and somebody who's dying and somebody who dies, I had the whole sort of gamut of experience in my own personal life that made it easier for me to see things that other people probably wouldn't see. I could see when a carer stressed and the tone and the language and the, you know, I was able to

identify, you know, and also with some of the programs I've worked with, like even working at kids' hospital, I'm able to have little ideas that an old person who hasn't worked in a hospital wouldn't have. I've learned a lot of little things along the way, simple things like put a silk sheet on the bed to slide, you know, little things that you don't need a whole to have the, you know, sliding board. I learned in community services that you can just put one of the sheet at the bottom, you know, across where the laps are. You can put a silk sheet and it's easier to turn the bed. You know, I think little tips like that. And I was able to impart some of these little tricks to people I met,

the parents I met that try this, this might help because I had learned all these little things along the way. So I was able to be a better social worker, I guess, because I had lots of tips in my little box of tricks. Yeah, two box, yeah, a little two box. Were there any scenarios where you felt it was appropriate to disclose to families or to clients that you've been through something similar? very few but there was one or two where I did simply say I had a child with this because they were

so distressed and didn't understand and I was able to say look it has happened to me and this is what we did you need to simple things like you need to get us help like people who are refusing to have any help you know we can do it ourselves and I was able to say look I use these services because they worked for me and with my family and getting counseling and stuff like that it's not It's not that you're not coping, but you need to have all the help that you can get. It's really good. And I think the other one that I disclosed were they didn't want their child to go into respite care. And I just needed to explain that sometimes you need a break.

And you have a breakdown if you don't. And I explained how it worked for us how the child, as long as it's a place where the child is happy and you go there and ensure that the child is safe and happy, you should be able to relax and they're happy and you're getting some rest when they come back. Yeah, so very few people who I did that with. Yeah. And of course, some people knew who I was. Right.

Because some people's kids went to my son's school and they were like, are you beef, mom? It's like, oh, okay. We've seen the picture of him and there's a plaque at school. It's like, oh, yeah. So sometimes you can't escape it. Yeah. Sometimes you can't. Yeah.

And then you left eye care not too long ago. Not too long. It's two years now. I can't believe it. Yeah. Yeah. I think after my husband passed away, which was four years ago now, I was run down. Yeah, I needed to stop.

I didn't know what my life was going to be. You know, when people die, even though he was sick for five years, there was always the hope that something would happen and you'd get better and life would go on as we planned. But of course, things happen. And I suppose I got to the stage where, yeah, I just needed to stop, really stop and take track of my life. and I think I also needed to sell the house and move because I need a fresh stop. I needed a fresh start. That's why I've ended up on the Central Coast.

My family were horrified when I just announced that I'm selling and I'm moving to the coast. You don't know anybody. How are you going to cope? But, you know, what's going to happen to each too far, mom? I'd actually wanted to go to Nelson Bay because my husband and I used to go there a lot. And we had planned to retire in Nelson Bay. That was a dream.

but I thought maybe it's too far for the kids I'll go halfway so that's how I ended up here on this part of the centre coast I just got in the car and drove until I walked into this house I thought yeah this is the house so I've ended up here and I had no idea what was going to happen but I thought whatever's going to happen will reveal itself so I've been here a year in July I love it you know I got myself a job at the local church the Anglican church two days a week just in the office. And I thought, is this all I'm going to do? But the funny thing is I go to the shopping center.

There's a lot of group homes for people with intellectual disabilities. And when I walk through the shopping center, it's like, hello. And, you know, it's like, it's a magnet. Hello. And I'm like, hi, how are you? And they start having a conversation with me. And I'm thinking, this is really weird. I've come to this place where, you know, these people just stop me in the,

why are they stopping me? There's hundreds of people in the shopping center. And they start telling me their story. And I'm like, yeah, yeah, yeah, why are you going to buy? I'm going for lunch. And I started having, and my friends who are visiting me once, they stopped and said, do you know those kids? And I said, no, I don't.

But I just have that rapport with kids, you know. And I'm like, no, I don't know them, but I'll start conversations with them. So I'm happy to tell you that I've actually just been offered the job, which I've accepted, working as an intellectual disability care coordinator. So I just laughed. I said right up my alley. And they said one day, a week, I said, that's fine for me. I don't want too many days.

It's just enough for me to dip my toe in. And I was missing that going into the hospital. I've always said, I loved working in a hospital. And people might find that strange, but I did. There's something about a hospital that's just being able to help people. And having spent so much time in a hospital, I want people to have a better hospital experience. Yeah. Because I had such a good experience in the hospitals, most of the time, there were one or two,

but most of the time I had a great experience with hospitals. And I've always wanted to be in a hospital and give back a little bit. And it doesn't have to be big, even if it's just a smile. Because I remember one day walking through Westmead Hospital, and this always sticks with me, walking in the corridor. And I stopped and smiled at this lady, and she stopped me. She says, thank you for making my day. You smiled at me.

And I'm like, I said, you know, I just smiled at her like, hello, you know, and I smiled. And she was like, thank you. She stopped me. Like, thank you. And I'm thinking, that's all you need. You know, it doesn't take a lot. You just need somebody to see you, you know. And that's why I thought I'd love to be back working in health.

I never thought it would happen because I didn't want a full-time job. And at my level, you know, the level I'm at, they're not that many jobs that are part-time. Yeah. you know, in the place where I want to work, you know, I'm quite happy to be working with, you know, clinicians and people with intellectual disabilities, helping them to look at the strategies and how we can, training staff to be able to work better with when they come into the hospital and also troubleshooting. When they come in and there's issues, I'm the person they can come to and call and see what we can do about that. So yeah, I'm really excited.

And you've also written a book in that time and you're working on your second one to leave a bit about that. It's called Buenbia's mother and it's my journey as a mother with a child with a disability and a chronic illness. And a terminal illness at the same time. There's a group in America of young ladies who showcase people from different cultures, particularly black people and who have done something remarkable or something that they can showcase. It's called Insaka talk show. And I was just on it yesterday. So I was just watching it today because they interviewed me on Thursday. They normally have it live on a Sunday in America.

But because I'm in Australia and the time difference, I thought, I'm not waking up at three. So they said, we'll pre-record it on the Thursday. So I was just watching that. So that's talking a lot about the book. And the influence of my son and my life has a little bit about that. So it's called Insaka, N-S-A-A-I-I-I-I-I-------------. Yeah, cool.

How was that process of sharing that different? and personal experience for you? No, I didn't have any problem. It was difficult writing some scenes because it's very, in fact, they were even saying it on the program that it's very detailed. She was even laughing, saying,

the way Patricia's written the book, it's like I'm walking into the room where she is and I'm seeing her walk through the house, literally. Like, it's so well written that those were her words, that I can see it's like you're following her life, walking step by step through her life. So it's on Amazon. It's called Gwenbya's mother.

Yeah. Yeah. So it just talks about having a child with a disability and what we go through, what the family goes through, and how you come through it. And mostly written, because a lot of people used to ask me,

how come you're so brave and how come you've gone, you know, you don't appear like, you know, the family didn't break down. You guys seem to handle it really well. So I thought, don't keep asking me,

I'll write the book. And also because, my son was such a remarkable young man that he touched so many people. I mean, even to this day, I'll be walking in a shopping center and I'll go, Hi, are you B's mom? It's like, yes. We used to come to B school and we were the, you know, whatever, the peer support group, you know, who used to come to the school and B was one of the people who played team ball with, you know.

He just made such an impact. Yeah. Or I'd walk into Davis Jones and some woman stopped me. She goes, are you B's mom? I'm like, yes. And I'm like, who's this person, you know? And then she goes, oh, I used to work at the reception at the kids' hospital, you know. And now she's working in Myers, you know, like she was security or something.

And I'm like, oh, okay, what are you doing? You know, and I'm like, oh, I'm writing a book. And I'd walk into a doctor's surgery somewhere where, you know, I just happened to, I need some medication or something at some medical center. Hi, I used to work in immunology. I had sick blood and how's beer? Like, B diet, it's like, yeah. So even now, you know, there's still people who remember him.

But just for such a small person to have lived such a short life and to have had such an impact and touch so many people, it's so beautiful. In fact, about three months ago, I went to Bay Cottage, because I'm now on the parent advisory committee. It was the first one. And there were three people who were there, because he was one of the first kids to go to Bear Cottage in the first year that it was run.

And there's still three staff who remember him. And I was telling them, do you realize it's 20 years ago that he was here? They're like, what? You mean I've been here that long? I said, yep. And they were all talking about it. Remember when he did this? Remember?

Because he was naughty. Remember what he? You know, he did this and he did that. I'm like, guys, you still remember. And all the other families like, what are you talking about? Oh, that boy in the picture had the cheeky little boy. Oh, the cheeky little one. Yeah.

So even now, people still remember him. Do you think writing came more naturally to you than other people? I'm just thinking back to the social policy and all of the community work and funding submissions and all of that sort of stuff that you would have had to do for work. Was this easy for you or was it still really hard slog? It wasn't hard slog. It was hard emotionally. So not the actual writing.

The writing came easy. Even when I read it now, I think, did I write that? Because it just seems like it's flowing. And I'm thinking, how did I even think of all this stuff? The difficult parts where somebody was asking me, how did you write that? Didn't you cry? And I said, I think because of what is wear my professional hat a lot. You know, that when I was writing, even when I read it now, I'm not me.

I'm crying for that young girl. Even when I was writing, I was thinking, my God, she didn't know what was going to hit her. It's like a third person rather than me. Yeah. it's almost like I'm writing about this person and I think it's also a reflection like I'm standing here now back in hindsight almost there's this person who went through all that

when you're living it you're not thinking about it you're living day to day you're just coping you're doing you know I was so focused that my son's going to have the best life that's all we focused on we weren't looking at oh he's going to die you know even though we knew it was coming but we were focused on every day it's like he had to see me happy

he had to have the best life we're going to laugh, we're going to have the best holiday, as much as we can. We'll do whatever we can in whatever way we can do it. So reading this book for me was like, oh, did this really happen? This is odd. Not the writing, but the reading back. It's like, my God, she didn't know what was going to hit her. Because when you're writing it, you're writing it in chunks, you're writing in paragraphs,

you're writing, and then you put them all together. Yeah. But when you read it as a whole, you know, because I wasn't writing it as I was, going like ADCD. I'd write scenes. You know, something would touch me. I'd write a scene. I'd write a scene.

And then I just sort of put it all together. You know? So it's when I got the final product and I was reading right through it. I was almost crying for her like, you know, she doesn't know what's coming. Look at her. She's so young and naive and I could see how young and naive I was. You know, how I just almost like literally stumbled through without thinking, not knowing that this was what's going to happen at the end.

you know, even though I knew it was going to happen, but I didn't know how it was going to affect everyone, you know. So yeah, it's like every time I read, it's like it's somebody, the poor thing, you know, that was a lot to cope with, I would be thinking, but not like that was a lot for me to cope with, that was a lot for this. How could she even do that? Well, given that you wrote it kind of like a play, it sounds like almost like you've got your scenes, would it ever eventuate into maybe a movie or something, a different form? that. Somebody's actually taking it to have a look at and he's thinking about it.

That's exciting. Yeah, I've got somebody in the family is a producer, produces movies. Uh-huh. So they said they're going to read it, but I don't know if anything will come out of it. Okay, all right. And what's book two? What's happening there? Book two is actually a follow-up of this book, because this book ends when my son dies.

But the question, because I did a writing class, as I said, Ike were very flexible. So when I was working the four days a week during the last six months that I was working there in 2021, I think it is. I actually took a writing course on the Friday, paper writing. And in the class, I'd written quite a lot more than what I've put in the book. And the girls who I was in the class with just said to me, you've got to write the second. You've got to talk about Mwango. A thing that happened that was really weird is my husband passed away on my. my son's 60th anniversary of the day he died.

Wow. At the same time in the morning where the son's coming up. Yeah. So they all said, you've got to write that story because you were also quite a special man, you know. And the comparison of the two deaths and the two lives would be really interesting. Because I'd written a few scenarios about him, you know, in the class and I'd read it to them. And they had said, you got to do Mwango story. Yeah.

So that's the next book. So there's three stories. coming and the next one as well. Because people keep telling me, how do you do this? And the next one is me being a widow. I never expected I would be living in this house by myself.

The book will explore how unexpected the life after my husband passed away has been and how different it is from what I had imagined it would be. And how I always thought I was a strong person and like I'll be fine.

I wonder how much different that experience would have been back in a different country versus Australia where the health system is quite good, right? Yeah. There's positives and negatives, right? Some of the things like I wrote about in the book, if my son had died in Zambia, the burden isn't on the people who lose the child.

It's on the community. We would not have been organizing a funeral. We would have been just asked, you know, and then other people would have arranged everything. You don't get involved. in it. You sit in a room, people take care of you, they feed you, they bath you, they brush your hair,

they look after you. Other people do all the work that needs to be done. They'll hand you the flowers to put on, you know, so you're not doing all that stuff. You know, they'll just bring the readings, are these okay? Are there any particular songs you want? Most of them, they'll do it all.

You know, so it's very different. And there'll be somebody staying with you until you're okay. People don't leave. There's always some family member or somebody who, stay at the house until they know that, okay, things are okay. They might stay a year. Some people stay six months, two months, whatever. They'll gauge that this person is okay

and somebody stays with them all the time until everything's good. Children will be taken by grandparents or aunties or whatever until they make sure that, okay, now it's the units, okay. You'll be supported. People who cook food, you know, you know, yeah. So it's different scenarios. So even though you wouldn't get some of the professional services, you actually get them in a different form.

Sure. Yeah. You mentioned that while your son was alive, the treatments and outcomes for kids with MPS2 were not great. It was a terminal illness, which makes me think perhaps it might be improved now. Is that any better in terms of treatment? Yes, it's no longer a terminal illness. What happens with his body who is missing an enzyme that breaks down the natural sugars in the body? So other people's bodies flash out the natural sugars that your body produces.

His was missing an enzyme to break down those sugars. So it's what's called a connective tissue disorder. It's like glug. It gets stored in the connective tissue. And that's what causes like in the heart and the lungs and the spleen and the liver get stored in there. And also in the nerves as well. So it could cause, that's why it caused a bit of intellectual disability as well. Yep.

So it caused a lot of stiffness. But also pain, right? Sounds like it'd be very painful. Oh, it's more stiffness. But in the heart eventually, yes. So now they've got the replacement enzyme. So through infusions, you can go in and get infusions. And now I think even actually it was my daughter who was working in a hotel

because she did hospitality. And she said these two kids came in with their parents and they were from one of the Scandinavian countries. They actually had an implant with a little pack that was, the infusion was going so they could travel. That's amazing. So it was infusing. I don't know what it's like now, but before in Australia, it had to go into Westmeat to go and get the infusion every whatever few months.

But now apparently they've got where the pack get an implant and it's doing itself and the pack you carry it on your hip and stuff like that. So, yeah, it's come a long way. That's so great. Yeah, it was very sad because it was probably three years after he died that Australia announced that it was available. It had been available in the UK in the United States because they're always quick to get it. Okay.

You know, but in Australia it was costing like 130,000 a year or something. So it was like prohibitive. But even by that point, it would have done so much damage to his little body as well. Yeah, it was too much damage for him to go on it. Yeah. Yeah. Wow. Yeah.

So it's all a learning curve, I suppose. And yeah. What incredible experience. I can also see that intersect of law and social work in terms of like your early days of really being passionate about that international law and justice and policy development and research. There are so many aspects of that side of law that lend themselves really well to social work. So I can see the crossover,

even if it wasn't immediately obvious to you as a young woman. But it's helped me in my work now because all the basics you learn in the first few years of law school, they're the basics. It's like law of tots, you know, contract, law of contract. So even when I'm looking at something, I know to look at it with a different eye from what's, somebody would be looking at a contract.

Anything, whatever I'm reading or writing, I'm more able to say, ah, that word shouldn't be there. That might cause problems. Because I've had the basic training, that's just a general, you know, thing that you can carry over. So when I'm looking at stuff, I'm able to say, no, maybe we shouldn't use that word or you shouldn't actually say that, you know, so you've got more of an insight into being aware of legal stuff, how things could go. And social work gives you a bit more of a critical lens as well.

over things. It does. Yeah. Wow. Yeah. I have so much loved hearing about this, even just from the very beginnings when you felt like you were floating around back in the US trying to figure out where you belong, and you just happen to have a professor who recognized your interest and your abilities. And that first role that you had out, or the first couple of roles, I guess, that were really diverse and there was a lot of freedom to make it your own, to really develop the program and the project. and then to come to Australia where you were just kind of bombarded with this really challenging news and having to adjust to life in a new country on top of all of that, identifying as a carer, being vulnerable in both your workspace and also your personal

space, just amazing. And then being able to have all that substantial experience across different lifespans, across different disabilities, and then working both face-to-face and back-end work, of the advocacy and using your experience to provide education to other people, supporting health outcomes for workers, clinicians, community members. And the multicultural aspect, don't forget, that's really important. Absolutely, yes. It comes in handy.

So helpful. But, I mean, you're right, it's not the most conventional social work journey, but it's so obvious to me how all of these roles are social work roles. They're not called social work roles necessarily, but you've got all of your training and experience that you can transfer over to these settings. Yeah, I just, I feel like it's so unfortunate that your life imitated your work in some ways that you've had to go through all of these challenging experiences. Like in some way, I wish you could have been a clown or a kid's face painter at, you know,

birthday parties because then your life would have been very different. But, you know, you've had the experiences you've had. You've had so many wonderful ways of touching people's lives and having your family members touch people in ways that you couldn't even imagine and you're still working out today. So I'm excited about your new role as well and this opportunity to hopefully help others to have a more positive hospital experience. And yeah, I think regardless of what you do from this point, it's going to have a huge impact and I really look forward to seeing where it lands.

Is there anything that we haven't, had an opportunity to talk about that you want to mention. Oh, did you know that I had while I was with ACI, I actually co-authored. Oh, the clinical handbook? Yes. Amazing. Tell me about that. Okay, where is it? It's a clinical handbook in adolescent medicine. It's a guide for health professionals working with children and young adults. So I co-authored one of the chapters in that book. And the book is by Kate Steinbeck and Michael Cole. So these were a lot of different professionals, some of them from overseas who contributed to this book. So there's quite a lot of people.

I think we're over 100 of us who wrote, but a few people wrote each chapter. So we talked about transition teenagers in adult hospitals, so young people in other hospitals. So that was an exciting project. Yeah. Amazing. I'm going to see if I can find a link to that. And also the InSaka show that you were mentioning, I'll find a link and I'll pop it in the show notes. One of the other ones that I was involved in was called Journeys, and it was done by palliative care Australia.

It was part of when B died, the kids' hospital wanted some parents. It was called palliative care for children and teenagers. It was developed by palliative care Australia. So I was on the carer's reference group, and it's called Journeys. So they used that. It's like used in the kids' hospital. They give it to parents who are going through kids who are palliative, so it's got different. resources. It's like a resource book. Yeah. So that was one of the things I was involved with.

Yeah. So I've been involved with a few little projects. Just a few. And you've got a few more coming up. So never a dull day. Yeah. Yeah. Keep myself busy. Well, thank you so much again for taking the time for sharing your experience and your story and your social work journey. And yeah, hopefully it's inspirational to so many people. And also my book is actually being reviewed. I don't know if you get compassionate friends. Do you know compassion friends? It's a peer support group for people who have lost children. Okay.

So do you want me to show it too? Yeah, yeah. So this one, but the one that is coming out is going to be the one for, I think it's October or November issue. Okay. Yeah. So it will have been, yeah, released by the time this episode comes out. So it's perfect.

Compassionate Friends, New South Wales. It's funded by New South Wales, Health and Bear Cottage and a few other organizations. So in every newsletter, they actually review a few books based on palliative care. So they asked if they could review my books. So there'll be a review in that. I hope it's favorite. That's amazing.

It just continues to reach more people. I know. There's just this little book that I wrote and it's starting to just. Yeah, snowballs in the most wonderful way, helping so many other people. No, I'm very happy. Like even though people who have been buying it mostly, I'm happy with. It's not the sort of book I guess you go out and you're going to bookshop and you think I'll buy this book now. I think it reaches the right target group, the people who need it.

So the people who have had come back and say they would like a copy of people who either have a child whose their daughter works with kids, you know, their physio and their daughter gets it. The mother gives it to her. She wants the other physios to read it and she gets more copies. you know or somebody who's got a child with a disability their daughter or their granddaughter has a disability and you know so it's just sort of going to people actually need it which is what i'm happy about yeah nice well hopefully this is another way that it can reach different audiences so yeah hopefully encourage people to get in touch and let me know if they want more information yep thank you again patricia i'd love love this opportunity to speak with you so thank you for your time

it's been lovely thank you for talking to me Thanks for joining me this week. If you'd like to continue this discussion or ask anything of either myself or Patricia, please visit my anchor page at anchor.fm.fm slash social work spotlight. You can find me on Facebook, Instagram and Twitter, or you can email SW Spotlightpodcast at gmail.com. I'd love to hear from you. Please also let me know if there is a particular topic you'd like discussed,

or if you or another person you know would like to be featured on the show. Next episode's guest is Kristen, with 17. years of social work experience in youth justice, child protection and the family court. Kristen qualified in Australia, but has lived and worked in the UK since 2012. Now alongside her social work role, Kristen supports other overseas social workers making the move to the UK. I release a new episode every two weeks. Please subscribe to my podcast so you're notified when this next episode is available. See you next time.