1 00:00:00,120 --> 00:00:04,040 Speaker 1: For the first time, Australian families affected by childhood onset 2 00:00:04,200 --> 00:00:07,400 Speaker 1: heart disease are going to have a specific framework to 3 00:00:07,400 --> 00:00:10,799 Speaker 1: guide their medical journey. It follows the release of universal 4 00:00:10,880 --> 00:00:14,600 Speaker 1: Standards of Care in Canberra today, the Federal Health Minister 5 00:00:14,680 --> 00:00:19,079 Speaker 1: Mark Butler joined Heart Kids in launching the Standards of Care, 6 00:00:19,160 --> 00:00:23,479 Speaker 1: which will provide clarity, clinical direction and holistic support to 7 00:00:23,520 --> 00:00:28,440 Speaker 1: the hundreds of thousands of Australian families living with childhood 8 00:00:28,480 --> 00:00:31,160 Speaker 1: onset heart disease. And joining me on the line right 9 00:00:31,200 --> 00:00:36,960 Speaker 1: now is Heart Kids CEO Leslie Jordan. Good morning to you, Leslie. 10 00:00:37,400 --> 00:00:38,480 Speaker 2: Good morning Katie. 11 00:00:38,640 --> 00:00:43,160 Speaker 1: Lovely to have you on the show. Now, Leslie, tell me, well, 12 00:00:43,240 --> 00:00:47,879 Speaker 1: how many Australian children are impacted by childhood onset heart disease. 13 00:00:49,680 --> 00:00:51,959 Speaker 2: So there are one in one hundred children, or one 14 00:00:52,000 --> 00:00:55,280 Speaker 2: percent of children are born with the congenital heart disease. 15 00:00:56,000 --> 00:00:57,920 Speaker 2: But we do know that, you know, there are over 16 00:00:58,040 --> 00:01:01,840 Speaker 2: eighty thousand people in the community with childhood on too 17 00:01:01,920 --> 00:01:02,520 Speaker 2: heart disease. 18 00:01:02,880 --> 00:01:06,959 Speaker 3: They're massive numbers and in some cases, yeah, you know, 19 00:01:07,080 --> 00:01:10,520 Speaker 3: and in some cases it's really like it's a really 20 00:01:10,600 --> 00:01:13,280 Speaker 3: difficult situation that families find themselves in. 21 00:01:14,840 --> 00:01:18,920 Speaker 2: Absolutely these families. You know, it doesn't just impact the 22 00:01:18,959 --> 00:01:23,240 Speaker 2: one child, it impacts the whole family. In particularly given 23 00:01:23,280 --> 00:01:25,399 Speaker 2: that most of the care provided to these families is 24 00:01:25,440 --> 00:01:28,520 Speaker 2: in metropolitan areas, So if you're living in a regional 25 00:01:28,560 --> 00:01:32,479 Speaker 2: or remote community, you're needing to travel and mentor often 26 00:01:32,520 --> 00:01:34,479 Speaker 2: these children the hospitalized a long periods of. 27 00:01:34,440 --> 00:01:37,600 Speaker 1: Time, Leslie. Is it prevalent for us here in the 28 00:01:37,600 --> 00:01:40,640 Speaker 1: Northern Territory as well, particularly when you talk about you know, 29 00:01:40,680 --> 00:01:43,240 Speaker 1: those in remote and more regional locations. 30 00:01:45,120 --> 00:01:47,760 Speaker 2: Yeah, So the particular problem that we do have in 31 00:01:47,800 --> 00:01:52,240 Speaker 2: Northern Territory is rheumatic heart disease. So dramatic heart disease 32 00:01:52,320 --> 00:01:55,600 Speaker 2: is a result of a child being untreated with rheumatic 33 00:01:55,640 --> 00:01:59,960 Speaker 2: heart fever. And we know that in about five percent 34 00:02:00,200 --> 00:02:05,160 Speaker 2: of our childhood population in those remote communities are diagnosed 35 00:02:05,160 --> 00:02:11,240 Speaker 2: with ramatic hunt disease and require significant treatment over a 36 00:02:11,240 --> 00:02:12,400 Speaker 2: long period of time. 37 00:02:13,160 --> 00:02:16,639 Speaker 1: So as they talk us through this framework and this 38 00:02:16,680 --> 00:02:19,960 Speaker 1: morning's announcement and what kind of difference it's going to. 39 00:02:19,960 --> 00:02:26,000 Speaker 2: Make sure the national standards really provide a very holistic 40 00:02:27,160 --> 00:02:31,040 Speaker 2: model of support and care for these families. They cover 41 00:02:31,280 --> 00:02:35,040 Speaker 2: both the cardiological side of it, the nursing, the surgical 42 00:02:35,080 --> 00:02:38,400 Speaker 2: side of it, but it also covers things like mental health, 43 00:02:38,440 --> 00:02:47,360 Speaker 2: psychological support, neurodevelopment, care of priority populations, and research, and 44 00:02:47,400 --> 00:02:51,480 Speaker 2: also the role of information and technology to support care, 45 00:02:51,639 --> 00:02:54,280 Speaker 2: particularly again in those regional areas. 46 00:02:54,520 --> 00:02:57,680 Speaker 1: And I would imagine for a lot of families, when 47 00:02:57,720 --> 00:03:01,240 Speaker 1: your little one is born and and you know, you 48 00:03:01,400 --> 00:03:06,360 Speaker 1: realize that they have got congenital heart issues and some 49 00:03:06,440 --> 00:03:10,200 Speaker 1: really serious issues to deal with. There's obviously the journey 50 00:03:10,240 --> 00:03:12,440 Speaker 1: that you go through when they're very young, but then 51 00:03:12,480 --> 00:03:15,160 Speaker 1: as they grow and as they get older, there are 52 00:03:15,160 --> 00:03:18,360 Speaker 1: different issues and different concerns that arise as well. So 53 00:03:18,400 --> 00:03:20,880 Speaker 1: it's not just about sort of taking care of those 54 00:03:20,960 --> 00:03:23,480 Speaker 1: kids when they're little. It's a whole life journey here, 55 00:03:23,560 --> 00:03:23,960 Speaker 1: isn't it. 56 00:03:25,000 --> 00:03:28,079 Speaker 2: Absolutely it's a whole of life journey. And again it's 57 00:03:28,080 --> 00:03:30,440 Speaker 2: not just about having a surgery and then you're fixed. 58 00:03:30,760 --> 00:03:34,360 Speaker 2: But there's a significant element of mental health and trauma 59 00:03:34,440 --> 00:03:41,200 Speaker 2: informed care, psychological support that's required, neurodevelopment for these children. 60 00:03:41,480 --> 00:03:44,120 Speaker 2: And then you know also that support during that transition 61 00:03:44,240 --> 00:03:46,920 Speaker 2: from them being a child under their parents' guide and 62 00:03:47,040 --> 00:03:51,000 Speaker 2: care to them taking responsibility for their care as an adult. 63 00:03:51,920 --> 00:03:55,680 Speaker 2: It's because it is a lifelong condition that they need 64 00:03:55,800 --> 00:03:58,920 Speaker 2: to manage and you know, dealing with the chronic condition 65 00:03:59,120 --> 00:04:03,360 Speaker 2: and workforce and family planning for women and all of 66 00:04:03,360 --> 00:04:05,480 Speaker 2: those sort of things then come into player as an adult. 67 00:04:05,720 --> 00:04:09,080 Speaker 1: Yeah, and you know, from what I understand, there has 68 00:04:09,120 --> 00:04:12,520 Speaker 1: been quite a significant amount of work going into this 69 00:04:12,640 --> 00:04:16,560 Speaker 1: framework to be put together to really support those families 70 00:04:16,640 --> 00:04:17,599 Speaker 1: right around Australia. 71 00:04:19,320 --> 00:04:23,960 Speaker 2: Absolutely, So the national standards launched today in Canbell was 72 00:04:24,000 --> 00:04:30,440 Speaker 2: an incredible culmination of four years of significant work by 73 00:04:30,480 --> 00:04:33,160 Speaker 2: over one hundred and fifty health professionals and members of 74 00:04:33,200 --> 00:04:37,840 Speaker 2: the COHD community to work collaboratively to pull together a 75 00:04:37,880 --> 00:04:42,400 Speaker 2: framework that will provide that holistic support for these families 76 00:04:43,279 --> 00:04:46,520 Speaker 2: and provide some real clarity around what people can expect 77 00:04:46,880 --> 00:04:49,800 Speaker 2: with that sort of diagnosis. 78 00:04:48,920 --> 00:04:53,039 Speaker 1: And how from a real practical sense, how beneficial is 79 00:04:53,040 --> 00:04:55,320 Speaker 1: it going to be then for those families when they're 80 00:04:55,360 --> 00:04:57,760 Speaker 1: going through what can be such a difficult time. 81 00:05:01,080 --> 00:05:06,920 Speaker 2: So look, it's incredibly powerful in that they can really 82 00:05:07,320 --> 00:05:11,679 Speaker 2: clearly the standards clearly articulate what they can expect. Yeah, 83 00:05:11,800 --> 00:05:15,680 Speaker 2: And so that also enables us as a national not 84 00:05:15,720 --> 00:05:18,839 Speaker 2: for profit charity that supports these people to advocate on 85 00:05:18,920 --> 00:05:22,039 Speaker 2: their behalf to ensure that there is actually then that 86 00:05:22,600 --> 00:05:28,760 Speaker 2: local jurisdiction investments in infrastructure and workforce and equipment to 87 00:05:28,839 --> 00:05:35,800 Speaker 2: actually ensure and enable a standard, consistent management of this 88 00:05:36,000 --> 00:05:39,719 Speaker 2: care nationally, so opposed to just having it in pockets. 89 00:05:40,120 --> 00:05:42,880 Speaker 1: Look, her kids do a phenomenal job. I know, my 90 00:05:43,000 --> 00:05:45,520 Speaker 1: little cousin used to be an ambassador for you guys, 91 00:05:45,560 --> 00:05:48,240 Speaker 1: and you know, her journey, I know has been an 92 00:05:48,279 --> 00:05:51,440 Speaker 1: interesting one. She's now in her twenties. And to see 93 00:05:51,440 --> 00:05:53,360 Speaker 1: the work that you know that you guys do to 94 00:05:53,400 --> 00:05:55,960 Speaker 1: support them, but also to really empower some of those 95 00:05:56,040 --> 00:05:58,279 Speaker 1: kids as well sharing their stories, I think it's such 96 00:05:58,279 --> 00:06:00,720 Speaker 1: a wonderful thing to do. And I hope that today's 97 00:06:00,720 --> 00:06:03,520 Speaker 1: announcement does, you know, I just go that step further 98 00:06:03,560 --> 00:06:05,359 Speaker 1: in terms of supporting those families. 99 00:06:06,720 --> 00:06:09,320 Speaker 2: Thanks Katie, really appreciate your time and being able to 100 00:06:09,320 --> 00:06:12,840 Speaker 2: get out the message of the importance of the national 101 00:06:12,880 --> 00:06:16,159 Speaker 2: standards around pageneral heart disease and the work's heart kids. 102 00:06:16,360 --> 00:06:17,040 Speaker 2: Thanks so much. 103 00:06:17,120 --> 00:06:19,120 Speaker 1: Good on you, Leslie. Thank you so much for your 104 00:06:19,120 --> 00:06:21,160 Speaker 1: time this morning. It's much appreciated.