Talking Vision by Vision Australia RadioTalking Vision 617 Week Beginning 21st of March 2022
Coming up on the show this week Sam speaks with Callum Padgett, host of a new children’s program on Vision Australia Radio called Happy Pants, taking place every Saturday at 10am starting April 2. Happy Pants is aimed at kids who are blind or have low vision or a print disability to learn and play in a way that’s fun, engaging and, most importantly, accessible.
Later on in the show Conrad Browne catches up with head of ophthalmology at Flinders University Professor Jamie Craig who shares some take home messages for people to look after their eye health and prevent glaucoma in particular. You’ll also hear from Jamie about some exciting new developments in testing to detect the early signs of glaucoma before it’s able to cause severe damage.
Jamie's research team at the Australian and New Zealand Registry of Advanced Glaucoma (ANZRAG) would be happy to hear from anyone who would like to provide a blood or saliva sample for our genetic research.
They are especially interested in those glaucoma cases with severe vision loss, and young age of diagnosis. To find out more you can visit their website at www.anzrag.com, or send them an email on info@anzrag.com
Then finally we wrap up this week with some news and information.
From Vision Australia. This is talking vision. And now here's your host, Sam Collins.
Hello, everyone. It's great to be here with you. And for the next half hour, we talk matters of blindness and low vision.
I mean, some of the worst cases that we see are those that, as I said, turn up to light because they were never having eye checks. All right. Now, those people sometimes don't wear glasses, you know, so they don't feel they have even a need to go for a checkup. But really, from 40 onwards, every two years, you should go to your optometrist and just have a general check and that will pick it up if it's there.
Welcome to the show. That was head of ophthalmology at Flinders University, Professor Jamie Craik. They're sharing one of his take home messages for people to look after their eye health and prevent glaucoma in particular. Conrad Brown caught up with Jamie recently to chat about some exciting new developments with some new testing to detect the early signs of glaucoma before it's able to cause severe damage. And that conversation's coming up later in the show. Coming up, just around the corner, though, I had the chance to speak with Calum Padgett, who's the host of a new children's program on Vision Australia Radio called Happy Pants, taking place every Saturday at 10 a.m. starting April two, aimed at kids who are blind or have low vision or apparent disability. And then finally, we wrap up this week with some news and information. I hope you enjoy this week's episode of Talking Vision. Happy Pants is a weekly radio program and podcast distributed nationally for Blind Boy Vision and Print disabled children under ten years of age and their families. Starting this April the second and every Saturday at 10 a.m. on your local Vision Australia radio station, and to have a chat with us more about happy pants and talk about himself a little bit. We have host of Happy Pants, Callum Padgett with us. Come. Welcome to Talking Vision. Thanks so much for being here.
Thanks so much for having me, Sam.
Now, firstly, Calum, let's some let's start by getting to know you a bit. Tell us a bit more about yourself. Yeah.
Well, I do love talking about myself, so.
Yeah, that's right. We have.
Yeah, we got. What have I done? What have I done? So I started out in radio when I was about 20, I think I joined 94.9, which is a melbourne community radio and came to my uni when I was studying nursing. And I got really excited and did a little interview with them and then desperately wanted to get more involved. So I was with them for a good couple of years and then left to study acting and ended up as a children's entertainer around the Geelong region, going into daycare centers and singing and dancing for little kids and having a great time and occasionally getting told that I looked like a dad. Right. And then. And then the general manager of Joy, who has now become the General Manager of Vision Australia Radio, Conrad, gave me a call out of the blue and said, I want to do a children's program on Regional Australia Radio. What do you reckon? And I jumped straight in and I was very excited.
Now that's really cool having that joy connection and everything and. Yeah. So you'd known. You'd known Conrad and Jason for quite a while? Yep. Cool. Okay. And how did the name Happy Parents come about? That's a pretty wacky little title that lovers really count. Anyway, so how did that sort of materialise?
Well, Conrad and I were having a discussion, what do we want to call it? And he said, I don't want you to feel like it has to be something like the kids or things like that. Like you can really go out there with it and have fun. And he suggested, Oh, no, you could even be something. Pants, I don't know, spaghetti pants or table pants. Any anything pants. Just because it's a silly, fun name for kids. And I work as a disability support worker as well as working at Vision Australia Radio. And one thing I often say to our participants is, oh, are we keeping our having pants on? And one day I just went, Oh, you know what? Keeping reinforcing, you know, wearing your heavy pants, having a great time. That's what I want the show to be about. That's what I want people to feel like. They're wearing the happy pants while they listening.
Oh, that's wonderful. And I guess we've talked a little bit about the program in general, but did you want to go into a bit of detail about what the program is about?
Yeah, so you summed it up quite nicely at the beginning there, but it's aimed at children who have blindness, low vision or imprint disability around the ten and under. But but it's also for all children and for all kids. So what we're doing is and what I'd like people to take away from it is that you can make things accessible to people just with a few changes and with a bit of research and being conscientious about other people's needs. So it's for all kids, but especially for kids with blindness, low vision and print disabilities. So we just go through and each week we always have a dance. We always learn about some sort of animal. Because I'm a big old animal note and loved chatting and learning about them. Yeah, I mean, you always have. Yeah, but not with me. You're bring up some sort of animal thing and I'm in there. And if I don't know much about it, then I'll research it because I just I just love it. And we have we always do try and do something active. So, for example, we're doing some yoga some weeks or we might try and learn tumbling skill, maybe like doing a somersault I reckons are fun skills and kids to have.
Definitely.
Yeah. And so we're always trying to keep kids active feel good. We also do some mindfulness.
To.
Get kids a bit more in touch with their bodies and how they breathing can affect their mood. And you can let your body calm down and then you're ready to calm down, for example, which was a great thing we used to use with kids when I was in daycare, and I'd have a tantrum about not being chosen to wear a costume or something. That way we often had to say, That's alright, you just take some deep breaths and let your body come down and when you're ready you can come join in again. But yeah, so we get people active, we get people thinking, we do a bit of we do a little bit of problem solving in their mess in English. A little bit. Just a little bit of education. Lots of fun, lots of activity and a bit of just calming, being aware of yourself. And we also use the books from the Felix Library, which is an awesome service. So we also always have a storybook each.
Week and that some that perfectly segways right into the next little point I was going to bring up. So how is supporting the program within Vision Australia?
Callum We have a lot of different people and my apologies because I'm not good with names but who have had who I've had meetings with in order to add to different questions from myself. But yeah, one of the big contributors is the Felix Library, which is a fantastic service where you can go in, you can get a tactile book, so it's all on audio books and they come with the the actual books as well. I'm really excited to go up tomorrow and see it for the first time because I live in Geelong. I haven't actually been to the main region, Australia in Kooyong yet, so that's very exciting for me. Yeah, but they have. So they'll take the book and they'll add Braille to it. They have descriptions of the pictures. They might make a felt booklet that has pictures on them. So the children read Blindness and Love Vision can feel the photos. Or if it's about a dog like who loves chasing tennis balls, they might have some tennis balls in. That was some wool from a woolly sheep. So they add all these tactile elements so you can really fully experience the picture book that you otherwise wouldn't normally be able to. And I think it's an amazing service. So I've been getting getting story recommendations use each week and I get to read some of the stories as well for recordings that they haven't done yet, which I absolutely love.
Yeah, they are fantastic resources for sure, so very looking forward to seeing how that all pans out now. Callum Naturally we do want children and families to get involved as well. So did you want to talk about that a bit, maybe provide some links in case people are listening to this and they're thinking, Oh well that sounds fantastic. I'm really keen to get my happy pants on.
Yes, everyone's good when they're having pants. The best way to get in contact is to email me at Happy Pants at Vision Australia dot org. That's a that's a nice straightforward way. We're also once we've got the website set up in a couple of weeks and we'll have a way for you to click and drag audio in so you can record yourself on your kids on your phone. Or if you got a little bit of a fancy set up at home like a lot of us do, now that we work from home, you'll be able to record things because I'll always be asking questions. And when you email me your answers, I'll read them out. Or if you click and drag audio, I'll pop them into the program for the next week. So you'll be able to hear your own voices on the radio, which I love. When I was little, I was always super excited, like write out a text message of mine. So I want people to get excited about radio as well.
Now for certain. Sounds wonderful. Thank you very much there. That was Callum Padgett, host of Happy Pants, coming up every Saturday from April two at 10 a.m. on your local Vision Australia radio station. I'm Sam Culley and you're listening to Talking Vision on Vision Australia. Radio associated stations of Our Age and the Community Radio Network. If you'd like to find out more about the program, like where to find your local radio frequency or listen to past programs. You can find all this sinful and more on the Talking Vision Web page. Just type talking vision into your search engine, or you can find the program on the podcast app of your choice or through the Vision Australia Library. And now here's Conrad Brown with Professor Jamie Craig. Conrad began by asking Jamie what it was that led him into the field of ophthalmology.
Oh, well, that's a great question. I, I finished medical school wide back in around 1990, and genetics was just becoming a very interesting specialty around that time. And I wanted to get some exposure to the research field. So I ended up doing a Ph.D. in sort of genetics of complex human disease in Oxford. And, you know, that was a terrific experience. And I could see this was a very complicated field and it was going to take many decades to unfold. And I wanted to keep working in that in a disease that was really important and common in Australia. And some of my work had been on blood diseases that were actually not that common in Australia. So I also enjoyed surgery and you know, I could see that glaucoma was a disease that could enable you to combine sort of high tech research interests in genetics but also operate and that that there was a real need to do things better in this disease. And that was, I guess, how the idea came about. And in terms of specialising in ophthalmology, you know, it's a it's a field where you can do tremendous good for people. And people are very grateful if you can maintain their vision or improve their vision. So they are quite motivated to work with you. And certainly in our research, the families are very interested in trying to get things done better for the next generation. And so we find a very high rate of cooperation for people to help us to to move the field forward. So those were some of the reasons why I ended up choosing that. And it's been a very rewarding area to work in and I still really enjoy it.
When I was doing this research for this interview, I was speaking with one of our colleagues at Vision Australia and they made the observation that detecting early stage glaucoma is challenging using current technology, as is predicting which glaucoma patients will progress to severe vision loss. Some patients who saw it who could have been saved or treated too late, while other patients who will never develop severe glaucoma and are unnecessarily investigated, monitored and treated. Is that your take on how this disease is treated and dealt with amongst patients?
Yeah, I think all of those things are really, really accurate. And, you know, there's a lot of challenges in in in managing glaucoma in a way that is sort of cost effective for the whole health budget and population. But that doesn't end up with individuals having terrible outcomes that could have been prevented. And, you know, this is what happens in the developing world, is that it's often diagnosed way too late when someone's completely blind in one eye and the other eyes not far off it. And we've got amazing treatments that can stabilize vision and often prevent it getting worse. But in this disease, because it's nerve damage to the optic nerve, generally, most vision that's lost at the time that we first find the patient can't be restored. And, you know, that's different to a cataract where you could operate and improve the vision, for example. So, you know, there's always a few people coming through and this is really tragic where the first time we get to see them, they've discovered that 99% of their vision is gone. And and then the question comes, well what if I'd been picked up three years ago or five years ago? And the answer in many cases could be that they could have kept all their vision if we had found them early in the disease process. And that's where the genetics is starting to really have some impact because we're by doing some very large scale studies of people who have lost a lot of vision by studying people to see how fast the disease is progressing and by looking at things like eye pressure and the. Shape of the cup in the optic nerve in normal populations where there's hundreds of thousands of images available. With the genetics, we've been able to get a better understanding of the many genes that impact. So by combining all those those markers into a single sort of test. We think that is much more able to predict people who are going to do badly. And so in the future, that will definitely enable us to prioritize high risk people who can then access treatment early, who can be in a higher risk screening program, and hopefully to enable us to push some of the other low risk cases out to have less frequent testing in an optometry setting, not in a specialist care setting. Some of them could be monitored without treatment, for example. So that is some of the areas that we're pretty heavily focused on at the moment.
Hopefully I'm not stating the obvious, but you've mentioned it a few times there that studies and in trials and research are extremely important. It's a complex field and there's obviously a lot going on around the world, particularly in regards to glaucoma. But what some of the work that you've been working on recently, particularly around the Paris test.
In research in general, in the field of glaucoma, there's a you know, there's a fair bit of excitement around the surgery improving, for example, at the moment. So, you know, there's a range of different operations that are suited to different individuals. But, you know, there are new devices coming along that help us to lower eye pressure and do that a little bit more safely and a little bit more effectively. But, you know, those are things often done relatively late in the disease and again, where we're very focused on trying to get the right treatment to the right patients early in the process so that ideally we could find everyone who's at high risk of blindness and make sure that they were dealt with early on. Now, at the moment, we are at the point where we have developed a genetic test that combines several thousand genetic markers that exist. You know, in in everyone has a number of these. But the more of those that an individual has, the higher their risk score is. And what we've been able to show is that if you're in the very high risk groupings of that, like the top 10% of the population, you're 15 times more likely to get glaucoma than if you're in the low risk grouping. And so it gives us an ability to sort of shift the probability that people are going to get a problem later in life. So what we would like to arrive at is a point where say at age 50 you could have that test from saliva or a blood sample and we could then determine who was going to lose vision late in life. A little bit like the bowel cancer test that comes in the post when you turn 50. But we're still not quite at the point where we have all the evidence in place to roll something like that out. What we do have is we've got pretty strong evidence that if we get people in the early stages before they've lost vision, that this test will determine who's likely to need treatment and how quickly the doctors would put that treatment in place and how quickly patients with early glaucoma are going to get worse. So if you're progressing very fast, you should probably end up having an operation, a surgical procedure, before it's too late. If you're progressing very slowly, you might be able to be monitored with just one eye drop or laser or even sometimes without treatment for a number of years. And our work is definitely focused about working out which patients should be treated in which way by whom. We've also shown that people with a very high polygenic risk score test, so those that have a very high score on that test are much more likely to have other family members affected. So if our patient sitting in front of us has a very high score on the test, they're more likely to have several other family members with glaucoma, and often those family members aren't having tests, so they may be oblivious to that. And in fact, often they're not even talking to the family. So part of our research is about informing the relatives of our patients about the fact that their risk of glaucoma is higher. And we have a program called the TARGET Program where people who enrol in our research are offered the opportunity to inform of who their family members are, and then we can send them information in a collaboration with Glaucoma Australia, where they get clear, detailed information about what glaucoma is and that. They should have a check up, how often they should have the check up and what sort of severity of disease is in the family. And that helps the specialists who see those family members to take it seriously. It in our tests, what we hope is that as the as that matures, that those family members would be able to access the PRC genetic test that comes from their saliva or blood, and then those in a very high risk grouping would be looked after differently. They would be in a screening program, as it were, so they'd have regular checkups.
So really the takeaway message here is the most important thing is, is to to for people to make sure that they if they have a history of glaucoma, that they have a regular eye exam and to really make sure that you deal with it as soon as possible.
That would be very important. Tai Chi messages. I mean, some of the worst cases that we see are those that, as I said, turn up to light because they were never having objects. All right. Now, those people sometimes don't wear glasses, you know, so they don't feel they have even a need to go for a checkup. But really, from 40 onwards, every two years, you should go to your optometrist and just have a general check and that will pick it up if it's there. So those people that are never going for an eye check, that's that's the first thing that could be remedied. The other thing is patients who are being monitored or they are being treated, but they get lost to follow up. So they decide that it's not so important for them. They've got other competing priorities and they might choose not to go back or they might have been prescribed drops, but they'd stopped taking them. And those patients sometimes then have a period of not being seen and then come back with very severe damage. And that that's that's something that which we would love to see not happen. But because of COVID and non-urgent cases being cancelled from clinics and some places not being able to offer clinical services at different times in lockdowns, there's a lot of patients who have come out of sync of their usual reviews. And, you know, I've seen one today who who was postponed a few times and now has very bad damage, and that could have been avoided. But I think the important message is that our technology isn't that far away from routine use. So we are looking to have these tests out there within 12 months as an available test that could be ordered by all clinicians. And, you know, we are in the sort of processes of having that accredited approved. And obviously, there's issues of how that will be paid for. And, you know, a lot of tests in their early stages are not funded by Medicare patients. You know, I would already know that. Okay. Scanning retinal imaging of the optic nerve and macular generally does not attract a medicare rebate, but it's very valuable in screening and monitoring glaucoma. So there are issues to resolve about those things that they can be done in the most cost effective way for the system and patients. And we're probably, we think, within a year of having our testing out there, and that will open up a whole lot of different possibilities for who will do that and how it might affect their care. One thing I didn't mention before was that, you know, we find that patients with very high risk scores on that test are much more likely to have required surgery in our registry project. So we run this registry of advanced glaucoma and patients who have lost a lot of vision for glaucoma. We're very interested in having their sample because it helps us to learn what the causes are for people losing vision. And, you know, within that registry, we keep track of how many people have had an operation, how many operations, how bad is their vision, how many family members are affected with the disease? How high was the pressure? You know, all these things. And we find that the high risk patients on the tests are more likely to have had surgery, they're more likely to have severe disease, and they're more likely to have progressed with their disease more rapidly, and they're more likely to have been diagnosed at a younger age. So all of those things would impact the way we would screen and look after a patient. So that's why we're excited about it. And we think that it should enable us to do better care and ideally prevent more people losing vision from glaucoma. Hopefully reduce costs a little bit for people who may have been overtreated or seen too often, who perhaps their risk wasn't as high. And this will unfold over the coming years.
It's fantastic work and so interesting to know. What's happening in this world. It is wonderful to hear about just some of the research that you're working on in some of the the great things that are happening in that space. I've been speaking to the chair and academic head of the Department of Optimal Energy at Flinders University, Professor Jamie Craig.
Thanks very much to Conrad Brown with Professor Jamie Craig there. Now before we go, just a quick bit of news and info. This a melbourne preview screening of the film Gator coming up. Gator is a vibrant, raw and honest film about a mother's heartfelt attempt to change her daughter Nieto's destiny after a brutal attack which left Naito almost totally blind. And that's taking place on the 30th of March 2022 at the Astor Cinema, which is on one Chapel Street, St Kilda 3182. They're asking people to arrive at 6:30 p.m. for a 7 p.m. start. And if you want to find out more about the film, you can head to Gator film dot com that's Jay Double eight. A film on one word dot com. And to book your film tickets you can head to Astor Theatre dot dot a slush film slush gator that's Astor Theatre on one world dot net dot aew slush films. Slush gator. And that's all we have time for today. You've been listening to Talking Vision. Talking Vision is the production of Vision Australia right here. Thanks to all involved with putting the program together. And remember, we love your feedback and comments. You can contact us at Talking Vision Visions Shire dot org. That's Talking Vision. Oh, one word at vision Australia dot org. But until next time it's bye for now.
You can contact Vision Australia by phoning us anytime during business hours on one 300 847466. That's one 300 847466 or by visiting Vision Australia dot org that's mission Australia dot or.
