Demystifying Genetics
This is a podcast series called Demystifying Genetics where I, Dr Matt Burgess, Genetic Counsellor interview other genetic counsellors, people working in genetics or people affected by genetic conditions. We chat about human clinical genetics, genetic counselling, ethics, pyschosocial issues and more. To contact me, please reach out at matt at insightgenomica dot au
Sponsored by TrakGene
www.trakgene.com
Demystifying Genetics
Resilience After Redundancy: A Genetic Counsellor's Journey; Demystifying Genetics with Angela Arnold Ross
Matt sits down with Angela Arnold-Ross, an Australian genetic counsellor living in New Jersey, for a candid and heartfelt conversation about professional resilience and personal growth in the field of genetic counselling.
• Sharing the experience of being laid off after 15 years and the emotional impact of unexpected job loss
• The stages of grief following a career disruption and how writing became therapeutic
• Using networking to rebuild a career path through connections with other genetic counsellors
• Navigating the complex landscape of genetic counsellor licensure across different states in America
• How the Cures Act has changed counselling approaches when patients receive results immediately
• Personal health experiences transforming professional counselling styles and enhancing patient empathy
• The importance of advocating for patients and teaching them to navigate complex healthcare systems
• Why accurate medical terminology matters for effective patient communication and appropriate care
Demystifying Genetics is sponsored by TrakGene
https://www.trakgene.com/
Hi, my name is Matt and I am a genetic counsellor. I am the host of this podcast, Demystifying Genetics. Today, my guest is Angela Arnold-Ross. Angela is an Aussie genetic counsellor living in New Jersey. Join us as we unpack our thoughts and feelings around many aspects of genetic counselling. Hi Angela, and welcome to Demystifying Genetics.
Angela Arnold Ross:Hi, thank you for having me. I'm very excited to talk to you today. Yeah, me too.
Matt Burgess:Now I know that this was a good time for you to record, because you said that your husband and daughter are out of the house, so you're home alone. They're at a daddy-daughter daughter dance. I just assumed that mums were invited, our mum's not invited no, it's definitely daddy daughter.
Angela Arnold Ross:So I don't know if people organize that so that we get a break from the pto or anything or whether like or what it is, but it's just them. They go dancing, but I think it's more. The kids are dancing around, the men are just chatting away, but they look cute, they look very adorable. When they left, I have to say oh lovely.
Matt Burgess:Well, I hope that this is considered downtime for you and um. It's not too stressful and we can just have a nice chat um what you ask?
Angela Arnold Ross:no, it should be fine.
Matt Burgess:I get to distress afterwards, so we are both genetic counselors from australia and we'll both live in New Jersey and about a year oh no, a couple of years ago now the thing that sort of brought us together or bonded us a little bit was that we were both laid off from our jobs and I know we sort of you know found it quite difficult and stressful and you know lots of different emotions. How are you going now? Sort of looking back at that tough time.
Angela Arnold Ross:I'm really good, I'm in a very good place. Like it's gone so fast, I have to say yes, because when we spoke it must have been a year and a half ago, but when it was like in January, when I was let go and by June I'd found this position that I'm in now at the Bassett Centre for Bracca and I feel like but it took me a lot to get to that spot. It was very stressful. I was with my previous workplace for 15 years and I didn't think I was going to be leaving and they did this reduction in force. It wasn't nothing that I did at all, but I was part-time and senior. At least that's what I think happened.
Angela Arnold Ross:And then you know, coming out into the workforce without a job after 15 years, it's very different. With respect to I didn't realize that there's AI. Read your CVs. I put this big CV I'm amazing, this is fantastic. And then I didn't get any bites. I was actually kind of surprised. But then, after a lot of networking, I got to where I am today. But yeah, it was a very, as you know, a very rough time, bad for the ego. What happens when that happens?
Matt Burgess:Yeah, definitely, and I think that it's something that genetic counsellors are very familiar with in America, but not so much in Australia. Like in Australia, as you know, most genetic counsellors work for public health and the idea of sort of mass redundancies is not something that we see that often, but unfortunately, in the United States there have been a lot of genetic counsellors, like hundreds and hundreds, I would say.
Angela Arnold Ross:Yes, I feel like you know, when it happens to you, you feel like it's just you right, and then when you figure it out like there are a lot of like from the people working in labs, they'll get let go. You know, I think it's right after COVID, you know, it just was a terrible time those couple of years.
Matt Burgess:Yeah, yeah. So I know you wrote a couple of articles and I think that that was probably a cathartic thing for you to sort of, you know, be able to put your sort of thoughts together and write something sort of sensible. And you know you told me that the aim was that you wanted other people to sort of benefit from what you had gone through. What sort of lessons do you take away from this horrible experience?
Angela Arnold Ross:Well, it definitely puts you in your place, I guess in a way. You know I love what I do. Genetic counsellors love their jobs. It's just an amazing profession and you generally feel very supported.
Angela Arnold Ross:But in the moment, especially with my redundancy as I'm sure a lot of others as well, but particularly for me I had no idea, so it came out of the blue, so it was extremely shocking. And, as you said, the pieces that I wrote, yeah, I just had this urge to write it down. I didn't want anyone else to go through or feel the way I felt and in that moment I just was writing and drafting, and writing and drafting. I haven't published them yet. I sent you the two to read and I actually haven't read it for a number of months now because I'm like, okay, we'll put that aside for now. But yeah, I mean it was a lot to deal with. But that definitely helped was to write feelings down with an aim to sort of.
Angela Arnold Ross:Initially you feel a bit bitter, um, especially when you don't feel like you've been. You weren't, we weren't treated very well after the fact at all, it was horrendous, um. But then after a while it gets less, less bitter and but at the same time I felt writing my emotions and saying how I felt in theory could be beneficial to other people. But then, now that it's been some time since I wrote it actually, or or since all this happened, now that I'm sort of in a happier place, I have to read it again now that we've spoken, and see whether I do want to publish at least one of them, if it will be beneficial for others. But it's like in that moment you just feel so disrespected. You feel so, you just feel like you. It's just a terrible feeling, absolutely, absolutely terrible feeling.
Angela Arnold Ross:So I put all of those words and everything into that article and I just I know it's a bigger picture and it's not just me, it was a whole lot of people and but as a clinician I felt like we weren't treated very well and doctors weren't treated very well. We were just put out to pasture like right after a big clinic day and told it was effective immediately, no chance to sort of sign off notes or say goodbye to anyone, and then that sort of set the tone, I think, for what happened afterwards, when no one would contact you, and it was just a really horrendous time. So I don't know. You'll have to tell me, when you've read my pieces, if you think it's, if it's helpful or if it's just, as you said, a good way to get it out on paper yeah, so you said that you had no idea that it was coming.
Matt Burgess:Like, do you mean you literally had no idea? Like you walked into a meeting and you didn't know what it was about and then you found out that you'd been let go. Is that what you mean?
Angela Arnold Ross:Absolutely so we knew there was going to be a reduction in force across the whole system. I was working at a cancer hospital and a comprehensive cancer hospital, so we knew there were going to be layoffs. I'm 15 years senior. I'd gone down to four days a week for family, you know, for work-life balance regardless. But we're extremely, extremely busy in the clinic, like crazy busy.
Angela Arnold Ross:And so the day that this happened, I mean I was thinking that maybe admin staff were going to be let go. You know, I really didn't think that clinicians would be let go and I saw five patients back to back. Very, you know, those days are very long. I love my cases, but you but long days with one of my bosses that I work with no inkling was called into a meeting and I thought it was to say look, the admin staff are being let go. We have to do more of this. X, y, z, and it was horrendous. I was like wow. And for some others they had a feeling there was a reason. There were sort of situations for certain people that they sort of had an inkling that they might be, but for me, honestly, I had no warning You're blindsided.
Matt Burgess:Yeah, that's really tough, like I know for my team. Our whole team were let go and we were given like because we all worked remotely, we were invited to a meeting the following day. So it was Thursday night at about 6 pm and my team started talking and we kind of thought maybe this was one of the reasons. So I mean, it was still sort of, you know, maybe 12 hours notice and we had like an inkling, but but yeah, still wasn't pleasant.
Angela Arnold Ross:It still makes you feel terrible. Right, I mean you feel, although it's not. If they said, it's not you blah, blah, blah it doesn't.
Angela Arnold Ross:It feels like it's you. You know, in that moment, you know it's gut wrenching and I, you know I went through pretty much the stages of grief it was. It was so shocking and and I'm sure you sort of felt the way too, you know, you're angry and you're sad and you're this and you're that because it's just blindside you. But then to top it off, not only just losing your, your position, what you love doing, it was then being treated so badly afterwards, like really not in a very, um, empathic way at all. And then I've actually heard different um. This is actually new news that I've heard recently um, gathered just from talking to people, like one of my colleagues was allowed to go back to their office and collect their stuff.
Angela Arnold Ross:Um, out in jersey, where I was working um one of their off sites, they wouldn't even let me in the building to collect my stuff, and it's just, you know. And no one picked up the phone and called me. If you can believe it, that was really tough after 15 years that no one picked up the phone and called me at least my bosses, the genetic councils I could get, because everyone was probably afraid of losing their position. Um, and I think they were told not to make any concerted efforts, was that were the words. But um, my bosses didn't even who I've been working with for 10, 15, then 10 years. Didn't call yeah's upsetting.
Matt Burgess:That's my ego. Yeah, I was kind of thinking sort of how can we put a positive, something positive, out of it? You know, what can we take away from it or what advice can we give? I know for me and it sounds like for you as well one of the hard things was just some of my teammates that I've been working with. Like I never spoke to them again and I just thought it would be really nice if they reached out just to say you know, I know what happened, sucks, and I hope you're okay.
Angela Arnold Ross:So the people that weren't laid off, the ones that were still at the job, didn't hear from them again.
Matt Burgess:Yeah, I mean, some of them did like some of my close sort of workmates. But you know, there were people that you know I would see every couple of months and we worked together and then I just never heard from them again.
Angela Arnold Ross:And I thought oh, that sort of upset me. Did you feel like you could reach out to them or not? Or you felt in the moment you're like they?
Matt Burgess:should reach out to me. I'm the one who lost my job. Yeah, I did kind of feel like that Like yeah, they all knew kind of what happened, they kept their job. I mean, that was sort of the raw emotion at the time and you know, it happened to me about two years ago now. So you know, if I needed to reach out to any of them or ask them questions, I would, you know, not hesitate to do that.
Matt Burgess:But I've just I don't that the the people who did reach out just to, even if it was just a text message, and they said hey, matt um, you know that that was really horrible what you went through. I hope you're okay. I don't think they realized how significant or how much that actually helped me.
Angela Arnold Ross:Yeah, yeah absolutely, and that's what I say in my piece. You know, it just would be nice if someone reached out and acknowledged that you didn't do anything wrong and made it. You know, sort of made it sort of, yeah, put it into perspective, and but you know what I think? What I've realized, though, is, look, everyone goes on with their lives. It's like, oh, that's terrible, and they move on. And I loved when I got so I got, I was able to.
Angela Arnold Ross:I lost my email like midnight that night or something, so I was scrambling, sending emails to as many people that I could you know off the top of my head, the people I had relationships with in the in the hospital to say I'm so sorry. I thought I actually wrote a very good email. I should have uncopied it out for you, but it was kind of a cool message to say goodbye, um, and the responses were wonderful, um and um and I and yet I absolutely agree the ones that reached out even just said the minimalist thing was just so nice because it really sort of, you know, boosted you up. And advice I'd give to other people, like especially people in superior positions, just to think a little bit more about what's happened in that moment and reach out, and that's, you know. Then life goes on, I guess, but, um, but, like one thing that really made it aware, and is that one of the doctors that I work with, she, she said, she emailed me eventually, like after 10 days, one of my bosses, right after 10 days, and then said I'm sorry it took so long, I was busy. I'm like really, you know, so it's those sort of things.
Angela Arnold Ross:But then at the same time it's like, well, they don't think about me, it's work, you know, but, but, but I guess it's be nice to people and this goes across to finance, people who get let go all the time, um, which a different thing, you know. When you can, um, you know, can steal money, but for clinicians we abide by hipper in theory. Practically, we're like, well, I'm not going to go publish a famous person's pedigree in the new york times or something. But I felt like, just if they understand the emotion, how we feel as people, just for a short time, I think that would just be such a nice way. I get it's HR, you know, I've rationalized it so many times like, oh, but I get it's HR, it's not them, but then is it? They could have picked up the phone, so many things around and but you know it's it's it's because I was trying to think of something.
Angela Arnold Ross:I'd like to be helpful with this because, as you can already tell, with my emotion, I still get very upset by it, um, and I feel slighted, but when it comes down to it I was an employee and I really, but then I really felt like one afterwards. You know what I mean. I thought I had I went my whole life. You know I came to the states to get the job and I had met my husband, had my daughter and all of that stuff. So it meant a lot for me, but I understand it's not a lot for everyone else.
Matt Burgess:Yeah, and I think you know, as genetic counsellors we're used to the idea of having supervision and talking about our feelings and you know we're experienced with sort of that therapeutic relationship and like I know part of it, for me I kind of felt like it was an interesting sort of social experiment. Like, even though I was sort of angry and upset and go through all these stages of grief, as you mentioned, part of me was sort of it was like I was observing as an outsider, thinking oh, wow, isn't this interesting? Like, oh, I didn't think this would happen, oh, this is a surprising emotion. And I kind of feel maybe a little bit grateful that I did have that training and, like you know, with our colleagues that maybe were in finance or you know, admin, who don't have that sort of background, like maybe it was extra hard for them.
Angela Arnold Ross:Yeah, absolutely, because I've had people in finance and I know they get a gardening leave, they get laid off and all of you know, even if they quit, you know all that thing happens, but they could just be let go in an instant and out the door then. But yes, going through it yourself really makes you aware of what people go through, absolutely for sure. But then when I was similar to what you just said, when I was writing the pieces that I wrote one very emotional one and one kind of this might help people. As I said, I haven't read them for a while because it does bring up a lot of emotions, but that's when I realised I'm going through. I made that up myself. I'm like this is like grief, like I'm mad, and I didn't realize that. So I agree, it's a good point.
Angela Arnold Ross:I think that our background helped me a little bit. I don't know well good or bad, because maybe I overthought it a little bit, because I could analyze it in my head, but then I guess, having an irrational answer or sort of being able to think it through, you know why this happened. I'm going through this moment. I'll get through it. This happened. I'm going through this moment.
Angela Arnold Ross:I'll get through it. But again, you know, also, I feel like my age was a bit I find it's almost funny 15 years. I had my CV and everything. Yes, it was a surprise, but then, oh my goodness, going out to, you know, going to try to find another job LinkedIn was amazing, I have to say but then all the stuff that I just took for granted, you know, I just didn't realise. You know, I had to do the CV again and then somehow I figured out AI people read it and then I'm like, oh my goodness, so I had to do this. But it was a good learning experience. Looking back, it was six months of tough work, but I did find my way, but it wasn't easy.
Matt Burgess:Yeah, I think, if you know, really think about this horrible event that we went through from, you know, through the lens of you know, stages of grief, you know the last stage is sort of acceptance and I think, you know, both of us have got new jobs and we've moved on and I think that we have kind of. You know, we're definitely in that sort of final stage. We're able to look back and, you know, maybe we get sort of um a little bit emotional, but I think, you know, with time it does help oh, it does, and I've actually, now that we're doing this um, this podcast, I'm going to go back and read my articles again.
Angela Arnold Ross:I one I was going to my boss, who I love. Dr Domchek was amazing. She read them through um for me and supported me in every way, but I didn't. I've held off on publishing them. I think the perspectives wanted to publish one of them or whatever, but I just want to take a step back making them do to make sure I'm doing the right thing for the benefit of other people. Because, look, although that was terrible, I had amazing 15 years. Like I had the best experience. I can't even I can't even say that that is not true. Like I really had a great time in those 15 years and I love my position so much. I mean, I moved from Australia to the UK here to take that position and it was wonderful. It just ended sooner. But, as you said, like I don't know about you, but everything I've done in life, it's almost I don't know if I should believe in fate being a scientist, right, but everything I've done.
Matt Burgess:You can look back and go oh.
Angela Arnold Ross:So now, in that moment, I went crazy. I did all my CEUs, probably for the next certification. I've did all so many webinars and I sent out my CV. I was LinkedIn, as I said, was a very good professional working, but I ended up finding this position through networking. I did a presentation for Myriad and I you know all sorts of things like that and I found my way, but, looking, I'm like I couldn't have landed anywhere better. You know it's like so. It worked out in the end, but in the moment you really don't feel that way. So if anyone can learn from anything like it does get better, but it does suck in the moment.
Matt Burgess:Yeah, and I think that's an interesting point. You know, like you said, that you became very involved and sort of did lots of things and doing all of your professional development, and I think part of that is, you know, when you're laid off you've got absolutely no control, and part of taking back some of that control is kind of maybe overdosing or going sort of in the other direction.
Angela Arnold Ross:Yeah, because you don't know what's going to happen. I mean, you know, I love my job so much I really really do. I didn't relax at all in those six months. I was looking back. I'm like gosh, I wish I took some time to myself, but I was so frantically panicking. The other thing is healthcare insurance. You know, we lost that. We had to go on what we call Cobra over here and it's so expensive, like it's crazy. If you work for a hospital system in America, they subsidize some of your healthcare. So that was one thing. But then also, I love. I love doing what I, what I want to do. But yes, you're right, I did so much stuff. I was like my old self, like I was like when I was like 20 and young and I did, you know, energetic and doing, writing things and doing so much. And I'm like I've fallen back into my oh, I'm so busy I don't have time to do that anymore.
Matt Burgess:But um, but yeah I know I listened to um a couple of podcasts about, um, you know, reduction in force and being laid off, and it wasn't sort of genetic counseling specific. It was sort of um yeah, wasn't sort of science related or health related at all, but one of the key takeaways was the importance of networking and I kind of was like I don't feel like networking or I don't want to, but I think that genetic counsellors are just really good at networking anyway. Is that like how significant do you think networking was in that period of?
Angela Arnold Ross:time for you. It was amazingly wonderful in the sense of the support I felt for people I didn't know Like the part of our National Society of Genetic Counsellors at the time because, again, I was being I guess what's the word, it was being very insular. I thought this is just me, I'm going through this right. But at the time that this happened, they were doing presentations on what you do to get jobs and how to handle and how to get, and it was just amazing timing. There was one genetic counsellor I wish I could remember her name now. She was fantastic, giving me tips about how to do my cv, how to approach um people and and because again 15 years, I really didn't know and I didn't realize. I didn't know what to do, if that makes sense, and she was. She didn't know me from a bar of soap and she she got on separately and she emailed me. She missed. She was so wonderful at just giving me a hand just for her own benefit and the nsgc heads as a whole, because I I shared something.
Angela Arnold Ross:I can't even remember what it was about now, but I just felt so supported and just so heard. You know what I mean, because I didn't get any boost of confidence from when it happened. But the community is amazing and I fell into certain things. But I was definitely active so I sort of pushed myself forward. But just from doing a presentation, speaking to so-and-so, who listened to it, finding so-and-so, and then eventually someone was looking for temporary work because people were going on maternity leave and I'm like I'm free. I wish we could do that as a company, but you need the benefits. Networking is so important and, as I said, I'm not being paid by LinkedIn, but that was a really good resource, because Facebook and Instagram I don't think so, but it really was good, like business orientated, and you could sort of you know, make connections and I've still made some connections on there actually that are still beneficial for me as a whole or for what I do, giving presentations and things.
Matt Burgess:Yeah.
Angela Arnold Ross:So yeah.
Matt Burgess:I think it's Not what I meant you. The benefit that I find from LinkedIn. What I really like is you know I've connected to people and you know they've sort of reached out to me and you don't know them from a bar of soap, but you know you work in the same industry or you know we're all genetic counsellors, but then when you do actually go to a conference and you meet these people, you've already it's like you've already done that first step.
Angela Arnold Ross:It's lovely, it's very nice. It's so nice? No, it is, it's really nice and it makes you believe more in people being more humane, people being nice. Because you know, and I think, like I had people coming we just went to a national conference for inherited GI cancers in Philly and one of the counsellors had I was going to do I do a lot of interviews if I can, for student projects or whatever and she came up to me. I wouldn't have known what she looked like, but I think with my accent people can really figure out who I am. So a lot of people go, hey, ange, how are you? And I'm like hi, how are you? They come up and say hi and it just sets the stage, I think, just for making, as you said, a little bit easier. But everyone's so willing to help people generally, you know they really aren't out for themselves. Our communities are wonderful. I mean NSGC. As I wrote in my article, nsgc was amazing. This particular counsellor was amazing. It was yeah, it was. It was wonderful. That was a wonderful experience.
Matt Burgess:Oh, go ahead. Join thousands of genetics professionals worldwide who trust TractGene. Built specifically for genetics clinics, tractgene makes pedigree creation, data entry and reporting easy and efficient. Get a free demonstration today and see Trackgene in action. University students and academics can also access Trackgene's pedigree drawing software for free. Head to trackgenecom that's T-R-A-K-G-E-N-E dot com and explore what it can do for you. Well, one thing I wanted to sort of get your opinion on was licensure of genetic counselors. Now I think you know super like when I was thinking of it initially, maybe a bit superficially, I thought, oh, this is a great idea. Um, but logistically or practically in america, it does seem to cause a few problems. Yes, like, for example, you live in New Jersey, you were working in New York.
Angela Arnold Ross:Now you work in Pennsylvania.
Matt Burgess:Pennsylvania and New Jersey yeah, what has been your sort of like experience of licensure and are there any issues and how do you think that the Americans can sort of fix up the system?
Angela Arnold Ross:Yeah, well, it's funny because in my other position in New York we don't have licensure yet, so we could never use our billing code. We weren't really billing under the physicians and still seeing patients. But I guess we weren't really. We were billing under the physicians and still seeing patients, but I guess we weren't, as weren't that autonomous. Now that I'm at and again this is, this is being let go from that position to this position has actually been very good at making me aware of like it was a cancer hospital. That's all I knew. Now I'm at a big hospital, comprehensive, like oh, the PCPs are part of the system, got it, you know those sort of things. And so now I'm licensed in New Jersey and licensed in PA, which means that I can see patients in PA and New Jersey and I can bill for my services.
Angela Arnold Ross:We're not recognized by Medicare, the CMS recognized, which means we can't. There's logistics in America when it comes to the healthcare system, but if anyone's over 65 on Medicare, they don't recognize us as clinicians, so we can't. Actually we're not meant to see, bill or order tests for patients who don't meet criteria or not. So that's a hurdle to jump through because there's a lot of people who might suffer from that if there's not enough doctors to see patients. You know, in Medicare we just don't. We managed to see them with the doctors in PA and see people, but that's a big hurdle that people have to jump through, or the genetic counselors stumble upon the logistics of that. I mean, I think it would be wonderful for the profession as a whole or just for people who need genetic counselors. I heard at this meeting there's a shortage of genetic counselors.
Angela Arnold Ross:Now I'm like what? Not when I was looking for jobs, but you know they. But by being licensed and look, we don't get paid much. It's not, it's not. I don't get paid, by the way, for my services. I'm working in a hospital but we're allowed to bill and we should be able to bill because we put a lot of work into into our patients and prep and everything and follow upup. But I guess it would allow people to. Then we could, if we could bill for our services or most people around you know the country we could see patients autonomously for new visits and follow-ups. We could, you know, be recognised for what we do. I must admit I was very excited to be able to bill for a code for what I do and what I love doing. You know I'm not getting the benefit from the benefit from the payment from the service, but I'm like it was fun to put the code in and know how to do it because I'd never done that before. So I think and the other flip side, again to realize it's made me realize all about the licensure as well, which I didn't think big picture is.
Angela Arnold Ross:You know, then we have the medical. The liability would be on us if we're licensed fully with Medicare. Do we want to take that on? You know, at the moment we've got that buffer. The physicians, you know, are liable for everything, which is also fine. I don't know, I don't see, I don't know if you've thought of any huge negatives to licensure, because I just think it would be beneficial for the system, you know, to have genetic counsellors that could freely see people you know, and often it's under supervision, right versus you know there's such backlogs in clinics to see patients, you know, unfortunately, and a lot of that's because we, you know you need physicians and physicians can only do so much, they're so busy.
Matt Burgess:I mean, it's something that I have thought about a little bit and, um, it's something that I mentioned, uh, with my students in the class that I teach, uh, but I I guess the the drawback. I mean, there are a lot of benefits that I can see, but the drawbacks, I think, are probably, you know, in states like new york, how do we grandfather in people Like I think that maybe you know, there are genetic counsellors with literally decades and decades of experience who may not meet the criteria and then it's kind of okay, like if you live in the middle of one state and you're licensed by that state and you only work in that state.
Matt Burgess:It's great, um, if you live on the border of one state and, you know, maybe you work in telehealth or yeah, like logistically you know if you employ, you know you're a telehealth company and you're employing 10 genetic counselors and you can only put a call through to one that is licensed in that you know that is complicated yeah, that is complicated, yeah, that is complicated.
Angela Arnold Ross:Well, so I mainly see telemedicine because I actually live in North Jersey and south of me is where Philly is and where Penn is, but to me I think it's where the patient is, though. Right, so I can be in New Jersey, Philly, but the patient's got to be in Jersey. So when a patient you know says they're going to go to Florida, I say you've got to see me before you go to Florida. I can't do that, but I guess it's the licensure itself. Did you get licensed when you were working here?
Matt Burgess:No, I couldn't sit the board exam.
Angela Arnold Ross:See, that's a whole nother discussion.
Matt Burgess:And.
Angela Arnold Ross:I can actually see. I was on one of the boards for reciprocity between the UK, australia and America and it was interesting because I got to see initially I'm like, why not? But then it's different. With the healthcare systems it is definitely a different take. But I never want to take that exam again so I'll make sure I'm up to date with all my CEUs. That was tough, but you know, I feel like and I was actually just on a meeting earlier where you know it was pointed out that the PAs and the nurse practitioners they now can build, they're now recognised as clinicians, but that took time for them to get to that point right and so hopefully you know we'll get to that point as well. But telemedicine, well, this new code that's coming out. Have you heard about the new code that's coming?
Matt Burgess:out. I actually wrote a blog piece for Tr gene on the new code in america and how, because in australia we're sort of trying to fight or, you know, bargain to or negotiate to get uh many care item numbers as well.
Angela Arnold Ross:So okay, I sort of compared and contrasted the two differences.
Angela Arnold Ross:Oh, I want to see that you'll have to send it to me or tell me where to find it for sure. Well, that's very new. We just were talking about that today. But it would be lovely if we could get billed for the pre, you know, not just for the 15, 30 minutes, but for anything we do before and after. I think that's justified. So we're just seeing how that goes when we call out results. We're not billing for any of that.
Angela Arnold Ross:So that side of things because again, we don't really make money for the hospitals as genetic counsellors, but we should be able to sort of at least contribute a little bit in that way. So it sounds like if we do with this new code, it will give a little bit more flexibility. For that which will be non-patient-facing billing is what it is, for that which will be non-patient facing billing is what it is for that, which would be nice. But yeah, there's hurdles to jump through and there's, you know, the States. I was trying to think why do people not want this to happen, you know? But there's a lot of stuff that goes on behind the scenes that we just sort of don't realise. But we just want more genetic counsellors out there. I can't believe there's a shortage now. There wasn't when I was looking for a job out there.
Angela Arnold Ross:I can't believe there's a shortage now.
Matt Burgess:There wasn't when I was looking for a job. It's funny how things sort of change and, yeah, like swings and roundabouts, like you know, the rollercoaster of needing more people and there not being enough jobs.
Angela Arnold Ross:But also getting yourself away from yourself, because I think, gosh, we're all so busy, like, how can you even think about people being let go? We don't think you know the bigger picture, obviously, because not everyone wants to let people go, but yeah, it's. And, as you said, you know, this reduction in force just opened our eyes up to other things, I guess.
Matt Burgess:One of the other things that I wanted to ask you about, which is something very American in healthcare, which is not something that we have in Australia or other parts of the world, is the Cures Act. Now can you sort of maybe give us a little bit of a summary of what the Cures Act is and then how it relates to your job specifically as a genetic counsellor?
Angela Arnold Ross:relates to your job specifically as a genetic counsellor. Sure, so now, instead of when we're healthcare providers, we could, when we order tests or get, do you know if we can have a mammogram or if we have a colonoscopy and we have a biopsy of anything? All of the records that you know go to the ordering physician and then they transmit the results to the patient and then the patient's allowed to have a copy of the results. You know whether they ask for it or not. I'm not too sure. They probably often did not. But now there's a law in the States where any report or test that you have immediately as soon as it's released into the electronic health system, now the patient gets it as soon as you get it, which again opens the open sort of access to records. And you know the big picture that people have access to what they, what they've, you know what they've done and what they um, their diagnoses and everything. But it's, it's. I can see that. But if you think about the reports that we often see, so as a cancer genetic counselor I'm seeing mammogram reports that say, oh, there's something there. I've seen, I see, you know, other pathology reports where they might say lobular carcinoma in situ, which actually isn't cancer but it says carcinoma, and people are not reading these, can have access to these reports, that have no understanding of what these are. It puts a lot of pressure on the doctors especially as well, because if a patient sees a diagnosis of cancer like which you could which I've heard and it sounds like it's not ideal for most people is that then the patient? If it's on a Friday, saturday, sunday, the patient of course wants to speak to the physician. So there's a whole lot of to and fro with this act.
Angela Arnold Ross:I'm learning to accept it because before know, before this act, you know, we with genetic counseling reports, our genetic counseling reports or genetic testing reports, are very detailed and very hard to read. Sometimes even we have trouble sort of understanding all of all of what's in there, um and so, but we would always be able to have the reports and review them with the patient, show the patient, you know, walk them through the report and go through it with them, um, before even handing it to them, or sometimes not even giving the results until they come and see you. Or there's something contracted to how you're going to give the results to patients, but now patients basically see the results as soon as they're signed out. And I've realized within myself I'm having trouble with it, just internally. I mean, they're adults, that we see, and they, they, they seem to be okay, um, receiving them that way, or they're accepting it, cause what we tell them isn't always there's, often not as bad as what they've been told if, if they have a cancer diagnosis, um but um, but yeah, we, it just causes a bit of anxiety for me when it when it's that, because if someone's it says positive, like on the report, or uncertain. So I've actually changed, I changed my, my counseling style a little bit, depending on how you know the day, depending on who's in front of me, and also I'm trying to think, I was trying to think of ways to okay, so if someone opens a report, how might they feel about that?
Angela Arnold Ross:Now, this could be totally overkill, because I've even admitted that to patients look, this could be totally me, because they're like, oh fine, I'll see it when it's released. But I start saying now that you know if you see positive, it doesn't mean you have a cancer diagnosis, it doesn't mean it's a high risk, you know, and I'm available to speak to you and sort of go through it that way, but that's. I think it's probably more genetic counselors having trouble with that, you know, in our niche, in our niche with our reports, than maybe patients. I mean, they don't think about it probably. But it's been a bit to get through. You know a bit to work my head around, I guess, to get used to it.
Matt Burgess:Yeah, like I worked for some genetic testing labs in the United States and so you know this was a big issue for us. Like you know when do we upload a result and you know how, you know logistically what happens and how is the q. Is that going to sort of interact with that? And I think, as a patient, like if I think of myself as a patient, like if, if my doctor has ordered like cholesterol or you know, like um, iron or vitamin d or something sort of like that, I feel like I don't really need them to explain it, like I can look at that result.
Matt Burgess:Yeah, but you know, it makes me think of sort of medical paternalism. Like, as genetic counsellors, we are very conscious about okay, we order this test, how are we going to give it to the person? When are we going to make the results appointment? Are we going to give it to the person? When are we going to make the results appointment? Like I think that we are very mindful in organizing the best way to give it to a patient. However, you know, maybe we have our clinic on a Thursday morning but the report is reported on Monday morning and you know, in the past it's like okay, well, three days isn't going to make much of a difference. I can be prepared, I can look things up, I can, you know, gather information, I'll meet with a patient and then we can go through it, whereas now, as you said, they can see these incredibly detailed and complicated and complex reports by themselves and you know, like is it fair for us to say, well, maybe they shouldn't, because they are adults and you know they can choose not to read it.
Matt Burgess:I don't know. Yeah, it's an interesting thing.
Angela Arnold Ross:Well, I mean, I'm not saying I'm. In a way it's a bit freeing, I have to say, because we get sometimes slammed with results all at once, whatever reason. Down south it comes in waves. I don't know what it is. You'll have a week full of testing and I'll have maybe a week of no testing, people, you know, deferring or just people who didn't want testing. So the one thing because I can see when a patient's read the results and if they haven't reached out to me, then you know I'm going to get to them for sure. But then I feel like, okay, they're not upset, because I always worry that someone's going to get a result and be upset and again, that's probably me. Transference right, it is transference, it's probably totally me than anyone else. But yeah, I think that's made me calm down is that they're adults, they know what's happening because we do contract with them and I'd say look the results when you see them, I see them.
Angela Arnold Ross:I sometimes tailor it because we can hold them back for a short time, I think with reason. But then I'm thinking if they say it's okay, I'm like, okay, you can send it to that, but here's some warnings and then you know I'm available. That's my main thing is for them to know that I'm available. But I agree, I've had one person say that they think they were very strong, that this has to happen. It's wonderful and I have it. I mean, a lot of people are kind of like, well, I sort of wish I didn't open it because it's you know, a lot of. I read an article, I think for the New Yorker, I think a doctor wrote it about and it was really good to see the doctor's perspective of it and how much pressure that puts on the physician because also, whoever's signing these out, they do it on like Friday nights or Saturdays and you know, and it's not easy for someone to sit for that long. Not sort of understanding or knowing, but you know there's probably things.
Matt Burgess:And then you sort of get onto Google and then, if you're a layperson, you may not understand exactly what you're Googling, and then you get results. It's like, oh, is this relevant to my case?
Angela Arnold Ross:Yeah, Well, I actually say every day I say, look, I'm available to you, you can message me on the portal. It doesn't wake me up. But by you contacting me first means you want to talk about it and I'll get back to you as soon as I can. Just don't Dr Google. I say that and they all laugh and they probably do it anyway. But you know, yeah, that's crazy getting stuff from there. But again, that is opening it up to that. I guess If you're getting a report, you can't speak to the doctor immediately. It's like you can't help it. I mean, I'm hypocritical, I'd probably do the same thing. Yeah, me too.
Matt Burgess:So you sort of mentioned how your counselling has changed because of the Cures Act and what I wanted to ask was how has your counselling changed more generally? You know you're a senior genetic counsellor. You've been working for a couple of decades now. Can you see how your style or, you know, the way that you counsel people has changed or evolved?
Angela Arnold Ross:Yeah, absolutely, and you make me feel old decades. Yes, oh, my goodness, it's gone so fast. Yeah, no, it's funny. You said that because I've thought a lot about this and in fact I was trying to get a project together with students. I've been mentoring students, but because, you know, some things have happened in my life that have made me change the way I speak to patients and it made me think gosh, I wonder. I'm sure I'm not the only one, and how can we sort of bring it to the forefront?
Angela Arnold Ross:I know there's been a lot of studies about pregnancy. You know people who are pregnant and things like that. But as a whole I don't know if I remember reading anything about it, but there's a whole lot to break down here. So, for example, when I was younger and we did our rotations and back two decades ago, it was all prenatal. I was in my twenties, I didn't know, I haven't been pregnant or anything. So I was told, you know, a CVS is a push and a pull.
Angela Arnold Ross:You know you repeat what everyone says or you listen to people, you do rotations and you take a little bit from someone else, if you like the way they speak to patients and explain things to patients and that happens, I think, across the board. You change things whenever you speak to someone else or things. Board. You change things whenever you speak to someone else or things if we learn more information about certain syndromes. But I remember I loved prenatal testing at the time. That was always sort of had to offer and then I fell into cancer, as my fate thing, got into cancer and ended up being a cancer genetic counselor predominantly. And then I got pregnant and then and it was amazing and you know, apart from wanting to be, by the time I was pregnant you could test for anything Like when I started two decades ago it was like 10 Jewish genetic diseases and cystic fibrosis a very small panel. Now it's like exomes and things.
Angela Arnold Ross:And number one. My OBGYN said well, you'd know better than me. When I asked about the testing, I went no, I don't. And then I said, well, I, you know. Look, I'm an older mom and I went to the best doctor in New York for prenatal testing and I wanted to do a CVS. And for those that don't know, people might know this, but a CVS is a sampling of the umbilical cord before you know, very early on, so you could see if there's maybe some chromosome abnormalities or something. And so I went there and then I had it and he must have hit my uterus or something or hit my cervix Like I jumped, I screamed and my first thought was I started crying and said I lied to all of these patients for so many years that it was a push and a pull and it's not.
Angela Arnold Ross:That's the first thing I thought of. Was that? So I can laugh about that now. But then I would have tailored what I said to patients more like with my life experience. But I know that genetic counselors don't always have that life experience to do it, but it did make me think people have to be careful about what they. I never did anything wrong wrong, but you know what I mean, in that moment I recognized that I really didn't know what I was talking about. And I know it's not doesn't hit the cervix all the time, I don't want anyone to think that, but you, you just made it sound much easier than possibly it was. And there's a spectrum of. It could go well, it could go badly, all sorts of things like that. Um, you know. So that would have changed. And then I think, as we get mature and get more life experience, you learn to speak to people differently in certain ways.
Angela Arnold Ross:And another thing that stuck out to me and why I started to get more interest was I had a hysterectomy for non-cancerous reasons, but I had a really tough time recovering. All sorts of stuff happened that I didn't expect and whatever. And the doctors were very oh, it's this, cause, they see it all the time, right. Then they they, they don't didn't explain it to me that they saw whatever happened. You know, because, yes, you could think, okay, they brushed it off, that's good. But in that moment you're like what? And you've? You know, I try it's hard, I try not to bring myself too much into it, but I'm more aware of you know. Look, most people have a, even putting the word most. Most people have a good experience.
Angela Arnold Ross:It's laparoscopic. Laparoscopic I wish I was cut whatever to me, but you know what I mean. To at least tailor a little bit with life experience without having to necessarily share unless you wanted to. Like you know most people find it, you know, find it simple. It's laparoscopic versus like oh, it's laparoscopic, it's easy. Often you know you're back to work the next day, you know sort of things like that. I found that, that I tailored it and I'll also never forget a moment.
Angela Arnold Ross:A patient came in because again taught to say this and not say this and again, you're never saying it in a bad way and you don't mean to say anything incorrect and generally you're correct. But with having laparoscopic oophorectomy, this is before my situation. A patient came in and she decided she had to. She and her surgeon ended up deciding on a vaginal hysterectomy and she came in and she was in absolute agony. I'll never forget how she looked.
Angela Arnold Ross:It was horrendous. It wasn't. What was what we talked about. You know cause we, we just we're not doctors. We generally spoke about it and and but I'll but that's another thing. I'll never forget just how she reacted. You said it was. It wasn't to me. You said it was simple and although you know it wasn't what we'd said, it don't matter in that moment and she was just. It was just horrendous for her and that opened my eyes up. So I feel like life experience in certain situations or interactions with patients absolutely tailor the way you might speak to people or might make you more aware of how you speak to people.
Angela Arnold Ross:And I guess, just because I'm thinking, I'm decades old now, look how old I am but I'm just reflecting a lot more on that now and in my mind, and if I speak to students or I'm talking to students, I try and move away from like I understand, they're young and you haven't gone through it, and I'm not saying go get pregnant to go through it, but I'm saying, you know, this is be a bit more general and or or something like that. Um, just and again, that's just what I've gone, what I feel I've gone through.
Matt Burgess:Yeah, I had some something similar happen with me. I um, you know, as a cancer genetic counselor. We speak to women that um test positive to particular changes in genes that increases their risk to ovarian cancer and sort of the gold standard or the recommendation is for women to have their ovaries removed after they've finished having their families, and usually it is a quick and simple operation. As operations go, you know, it doesn't take very long, it is quick.
Angela Arnold Ross:You're in and out in a day which freaks me out is quick.
Matt Burgess:You're in and out in a day which freaks me out, but yeah, in and out in one day yeah, and like I remember that was how I counseled women, that's how I explained it to women and there was a patient she actually wasn't someone I saw, but I I heard about her she had, um, her ovaries removed. It was a quick and simple operation. However, she hemorrhaged and she actually nearly died and luckily she didn't die, but it was life and death.
Angela Arnold Ross:You know, it was a very serious situation and I mean that hardly ever happens when you have an oophorectomy, but it really did make me think about how I describe these operations to people Like yeah, you're not going to scare them and say, well, I know someone who almost died with it, you know, but you want exactly a couple of extra words, or the way you present it. Absolutely, yeah, I'm sorry you had to go through that. That is very traumatic. Yeah, being a positive Australian, you you know. You take these things, though, and you do learn from them, right and to sort of use it to the best, best of your ability pretty much, which is which is good, I think, but we're always growing as genetic counselors.
Matt Burgess:we're always learning and I guess, on that point, how do you feel that you advocate for patients? I know that advocating for patients is one thing that's really important to you. Can you tell me a little bit about that?
Angela Arnold Ross:Yeah, again, this has gone through my. I mean, I've always, as I said, I love what I do, I love my patients and we always genetic counsellors. We always want the best for our patients, as do doctors and everyone else, of course. But I guess I'm used to. As I'm getting older, I know more people who are having surgeries, more people who are, you know, have cancer, all sorts of. I've had some surgeries, things like that.
Angela Arnold Ross:So it does make you more aware and I've just realized I know how to navigate. Like if something happens with my friends, I'm on it. I'm like, okay, I know how to talk to the doctor. You'd be very nice, but you're very strong, Like you know, like you, this is how you, we know how to navigate the hospital. And some situations where people have asked for my advice and just the way they spoke, I'm like, wow, you really. Yeah, you, you, you know, you don't know. My dad, for example, went into, went into hospital and he was cold and I'd say, dad, ask the nurse for a blanket. Oh, she's busy, she's busy, she's got more to do than that. And I'm like, oh, dude, like you know, like you can be very nice to nurses, but you can ask for a blanket and a lot of people think they can't question the doctors. So I just have a big passion now and again this does stem a lot from when I went through my surgery as well of just to help people and make people understand that write down questions, because you always get nervous when the doctor comes in.
Angela Arnold Ross:It just happens regardless. You can always there's no stupid questions. You can within reason, but generally there's no stupid questions you can. They can spend time with you, Like if you shouldn't be feeling rushed, you might, but you know they can spend time with you. You're allowed to ask what you, what you want to ask, and make sure you get an answer. And then you know if someone doesn't call you back, you don't. You don't badger them, but you deserve a response. If you've, if you put in a call, either send it.
Angela Arnold Ross:I said to someone recently. I said why don't you put in a portal message Cause then it's, it's, it's documented. When you've contacted them and just you know, ask them for a response, or you know call them back and insist on being cause you're allowed to get answers, um, and so yeah, that sort of is. I just love sort of guiding people that way a little bit now, um, how to, how to sort of navigate the health care system, because that can be such a stress to people, right not having, especially when someone's diagnosed with cancer. You've got this appointment, this appointment, I don't know. And I had someone recently who was diagnosed and she's she's like well that so well, they don't think it's cancer, don't know if it's cancer, but like she was telling me about mastectomies and whatever and it, you know, it's like the woman pretty much knew it was going to be cancer and just did, wasn't direct, Right, but again, everyone does things differently.
Angela Arnold Ross:But I feel I try and give people some confidence when I'm speaking to them. If, if, if it comes up in conversation I mean I'm not a physician or anything like that but if they, if I say, oh, just a little tip, you know might think about X, y, z and so on and so forth, just to just to, to reduce as much stress as they can, as I can, if, if I feel that that's warranted, right, because they're going through so much. It's just just terrible. Um, but yeah, that's what I've been interested in. I'd love to. Or the other thing is going with advocating I think I told you this as well is it's all about the lingo? So I've had a number of situations where be it with my 10-year-old daughter. She could come in and say the sky is red, and I'm like, is it Because she's so confident? She really is. And for a a second, you totally believe it. Right, in health care, that people come to you my, my sister's got a BRCA mutation, or my sister's got the BRCA gene, okay, what gene? Or breast gene, or ovarian gene, right? Um, and so it's, and. And then you believe them.
Angela Arnold Ross:And if you didn't get a report, you know things could happen. So I guess a couple of circumstances have been that, like someone's come to me with information, I'm a real stickler for getting a report, even though it can be a bit of a pain. So if I can, I like to get pathology reports. I know they're not always available, but pathology reports, specifically genetic testing reports, um, the incidents I'm thinking of specifically was like um, the family history wasn't very strong but you thought there was a genetic mutation, one of the genes with that links with breast cancer. But there was no family history but she was told it was. It was her sister's got a mutation. In the end she did it. It was uncertain variant and it wasn't and she didn't really need testing, you know. So, um, and then, but but it was the way it was transmitted to her. You know she was told she had a mutation and then and of course they don't know to get reports or anything, and this is how it's disseminated.
Angela Arnold Ross:So in my presentations I usually have a slide like it's all about the lingo I want. My doctor said I need screening. Screening for what? Mammogram or genetic testing, because some people say that screening testing or I need the test what test? Big stickler for television shows. Oh my gosh, do they not have consultants? If anyone's listening and they've seen TV, I'm happy to consult with you. It's great that people bring it into their shows. But number one genetic testing results are not available in 24 hours. And number two, just saying I've got the BRCA gene or I've got the breast gene, we all have them. We've got two copies of them. Most people have got copies that are working fine, but then sometimes people are born with mutations and it elevates the risk.
Angela Arnold Ross:It isn't a diagnosis of cancer, right? So in my little world I try to change the way it's said. But also the reason for thinking that through is a lot of the way you speak to doctors or the admin staff affects the way you're triaged. You know what I mean. So if you don't give an accurate information and again, I'm never saying this to the point that people are giving it, they're silly or whatever. I'm saying just practically from experience if you can be as clear and concise as you can, have a report, know what it is, or something like like that, that's going to be so much beneficial for you than running around. And then someone said can I get the report? Can I do this? You know what I mean. Oh, you want screening? We'll send you to the the maps clinic, like the high-risk breast clinic. Oh, she hasn't had genetic testing yet. Oh, she comes back, you know. Just things like that, I think, can help you navigate the health care system.
Matt Burgess:But it just sounds like in lots of different areas you're really empowering you know your patients and your students and probably other genetic counsellors as well, so it has been so fabulous talking with you today. Thank you so much for your time and, yeah, I hope you've enjoyed your time chatting on the podcast.
Angela Arnold Ross:Well, you can tell I'm very passionate about what I do. I could talk all day on this topic, but thank you for giving me the opportunity to talk to you. For sure it's been a lot of fun and I hope people have learned something or it's been beneficial for someone in some way. Excellent Thanks, Angela.
Matt Burgess:Thank you.
