1 00:00:00,000 --> 00:00:02,560 Speaker 1: You know that people living with Parkinson's in the Northern 2 00:00:02,640 --> 00:00:06,200 Speaker 1: Territory once again facing uncertainty over the future of a 3 00:00:06,240 --> 00:00:10,760 Speaker 1: key specialist nursing role. Despite previous assurances that funding for 4 00:00:10,800 --> 00:00:15,640 Speaker 1: the Movement Disorders Specialist nurse would continue until midway through 5 00:00:15,680 --> 00:00:18,920 Speaker 1: this year, concerns have now been raised about reduced funding 6 00:00:19,360 --> 00:00:23,200 Speaker 1: and what happens beyond this financial year now. Gene Jaggst 7 00:00:23,480 --> 00:00:27,080 Speaker 1: is the coordinator of the Parkinson's NT Support Group and 8 00:00:27,120 --> 00:00:28,480 Speaker 1: she joins me on the line. 9 00:00:28,680 --> 00:00:31,760 Speaker 2: Good morning, Gene, Good morning Katie. 10 00:00:31,840 --> 00:00:34,080 Speaker 1: How are you yeah, really good? Thanks so much for 11 00:00:34,159 --> 00:00:37,559 Speaker 1: joining us this morning. Gene, can you just explain to 12 00:00:37,640 --> 00:00:41,760 Speaker 1: us what the Movement Disorders Specialist nurse role involves and 13 00:00:41,840 --> 00:00:45,479 Speaker 1: why it is so vital for territories with Parkinson's. 14 00:00:46,720 --> 00:00:50,919 Speaker 2: Well, a Movement disorder specialist nurse actually covers more than Parkinson's, 15 00:00:51,080 --> 00:00:57,240 Speaker 2: but test coordinator the Parkinson's Group support Group, that's what 16 00:00:58,200 --> 00:01:02,400 Speaker 2: we're at, you know, what we mainly advocating for, but 17 00:01:02,520 --> 00:01:05,200 Speaker 2: of course it covers other movements disorders as well. But 18 00:01:07,280 --> 00:01:12,440 Speaker 2: so when someone's diagnosed with Parkinson's, it's a really difficult time. 19 00:01:13,000 --> 00:01:16,280 Speaker 2: They feel lost, they don't know what to do. Not 20 00:01:16,360 --> 00:01:21,600 Speaker 2: all people who are diagnosed retirement age. Some are still 21 00:01:21,600 --> 00:01:27,320 Speaker 2: in the workforce and they need help to get their 22 00:01:27,400 --> 00:01:32,040 Speaker 2: medication right so that they can continue to work for longer. 23 00:01:32,840 --> 00:01:39,120 Speaker 2: Those who are older, medication is vital to living well. 24 00:01:39,560 --> 00:01:45,240 Speaker 2: They need advice, they need education. They might need help 25 00:01:45,319 --> 00:01:49,240 Speaker 2: to connect with other services such as physiotherapy, ot et 26 00:01:49,240 --> 00:01:56,080 Speaker 2: cxas field therapists. It's yeah, everybody with Wilkinson's is different. 27 00:01:56,280 --> 00:01:59,280 Speaker 1: Yeah, it sounds like it's an incredibly important role, though. 28 00:01:59,400 --> 00:02:01,240 Speaker 1: Jane and I, you know, you and I have spoken 29 00:02:01,240 --> 00:02:05,440 Speaker 1: about this before, because you're in a situation I reckon 30 00:02:05,560 --> 00:02:07,120 Speaker 1: was it maybe a year a year and a. 31 00:02:07,120 --> 00:02:10,200 Speaker 2: Half ago with an end of twenty four end. 32 00:02:10,040 --> 00:02:14,280 Speaker 1: Of twenty four, so in a similar situation then where 33 00:02:14,400 --> 00:02:16,960 Speaker 1: you were sure if that funding was going to continue, 34 00:02:17,000 --> 00:02:20,520 Speaker 1: and now well you're back in that situation. It's yeah, 35 00:02:21,360 --> 00:02:26,560 Speaker 1: it's ending June this year or mid this year. What 36 00:02:27,400 --> 00:02:29,680 Speaker 1: can be done here? What needs to happen? 37 00:02:31,360 --> 00:02:35,120 Speaker 2: Well, the initial the movement a sort of specialist nurses 38 00:02:35,200 --> 00:02:39,120 Speaker 2: started in twenty twenty two is excellent. She's still the 39 00:02:39,160 --> 00:02:42,280 Speaker 2: one doing the job. But it was initially only a 40 00:02:42,280 --> 00:02:46,480 Speaker 2: pilot program through the Comma of government. The primary Health 41 00:02:46,520 --> 00:02:51,600 Speaker 2: network was organizing it. They continued it for three years. 42 00:02:51,639 --> 00:02:55,079 Speaker 2: After I spoke to you, it was continued for another year. 43 00:02:55,600 --> 00:02:59,440 Speaker 2: But it was always expected, to my understanding, that the 44 00:02:59,480 --> 00:03:05,120 Speaker 2: stake of would take over that funding. And when last 45 00:03:05,160 --> 00:03:09,840 Speaker 2: time when I spoke to you it was it was continued. 46 00:03:10,160 --> 00:03:12,800 Speaker 2: The money was coming from the primary health network, I 47 00:03:12,880 --> 00:03:17,600 Speaker 2: believe at a reduced rate, so that the moving disorders 48 00:03:17,680 --> 00:03:21,360 Speaker 2: nurse couldn't go further than south than Catherine, so she 49 00:03:21,560 --> 00:03:23,920 Speaker 2: was visiting Alice she could no longer do that, and 50 00:03:24,000 --> 00:03:30,799 Speaker 2: some other places in Irenimhland also she couldn't visit. And 51 00:03:31,200 --> 00:03:33,840 Speaker 2: we need a well, we don't really care where the 52 00:03:33,880 --> 00:03:39,080 Speaker 2: money comes. That's what we've been told is that it 53 00:03:39,120 --> 00:03:42,160 Speaker 2: needs to be taken up by the anti government. We 54 00:03:42,360 --> 00:03:46,800 Speaker 2: have lobbied, we have given letters, members of the group 55 00:03:46,840 --> 00:03:51,480 Speaker 2: have given letters to their various members of Parliament. The 56 00:03:51,560 --> 00:03:54,120 Speaker 2: only thing we've heard is yes, we know about it 57 00:03:54,680 --> 00:03:58,160 Speaker 2: and we're working on it, but we've had no assurance whatsoever. 58 00:03:58,480 --> 00:04:02,280 Speaker 2: I've been told if my MLA that the budget is 59 00:04:02,320 --> 00:04:08,320 Speaker 2: basically set by February, so you were locating now, yeah, 60 00:04:08,360 --> 00:04:12,920 Speaker 2: and we'd really like to know. It is incredibly important 61 00:04:12,960 --> 00:04:16,440 Speaker 2: to people with Parkinson. Myself don't have Parkinson's. My husband 62 00:04:16,480 --> 00:04:20,880 Speaker 2: had Parkinson's for thirty three years. He passed away in December. 63 00:04:21,400 --> 00:04:28,000 Speaker 2: But the nurse's job is vital to helping people live well. 64 00:04:28,480 --> 00:04:31,680 Speaker 1: Jeane, I'm very sorry to hear that your husband passed away. 65 00:04:32,640 --> 00:04:37,479 Speaker 1: You know, it's I don't have. I am fortunate to 66 00:04:37,520 --> 00:04:39,800 Speaker 1: be in a situation where I don't have any family 67 00:04:39,839 --> 00:04:42,839 Speaker 1: members at this stage that have Parkinson's, But I cannot 68 00:04:42,880 --> 00:04:46,000 Speaker 1: imagine how difficult it would be if you do have 69 00:04:46,080 --> 00:04:49,280 Speaker 1: a family member that has Parkinson's, or if you yourself 70 00:04:49,440 --> 00:04:53,359 Speaker 1: have Parkinson's, and then the you know, the feeling that 71 00:04:53,560 --> 00:04:57,400 Speaker 1: people must be feeling right now, being unsure if this 72 00:04:57,520 --> 00:05:01,039 Speaker 1: specialist nurse role is going to be continued. Dude, Jean, 73 00:05:01,160 --> 00:05:04,279 Speaker 1: what is your message for those that are setting the 74 00:05:04,320 --> 00:05:07,720 Speaker 1: budget this coming year? You know, what would you say 75 00:05:07,760 --> 00:05:12,400 Speaker 1: to those decision makers in terms of how important. 76 00:05:11,680 --> 00:05:16,560 Speaker 2: This job is. Parkinson's is not like any other disease. 77 00:05:16,640 --> 00:05:20,719 Speaker 2: Everyone with Parkinson's, they say, if you've seen one person 78 00:05:20,760 --> 00:05:23,680 Speaker 2: with parkinson you've seen one person with partments, and everybody's 79 00:05:23,760 --> 00:05:28,200 Speaker 2: journey is different. It's vital to get medication right to 80 00:05:28,480 --> 00:05:33,839 Speaker 2: Parkinson's nurse gives support from diagnosis to palliative care and 81 00:05:33,920 --> 00:05:39,080 Speaker 2: everywhere in between. She's vital for if people are having 82 00:05:39,120 --> 00:05:43,040 Speaker 2: advanced therapies later in the disease, it's vital that someone 83 00:05:43,120 --> 00:05:48,840 Speaker 2: in the territory understands how to manage these. There's different 84 00:05:48,839 --> 00:05:52,640 Speaker 2: devices and different ways of administration. It's vital that someone 85 00:05:52,720 --> 00:05:55,880 Speaker 2: in the territory understands how it works and how to 86 00:05:55,920 --> 00:05:59,760 Speaker 2: adjust it. Things like deep brain stimulation where there's an 87 00:06:00,040 --> 00:06:05,360 Speaker 2: planted device that you've got people in age care with them. 88 00:06:05,440 --> 00:06:11,080 Speaker 2: They can no longer go south to access care for 89 00:06:11,120 --> 00:06:13,200 Speaker 2: that because they're in the age you know, in the 90 00:06:13,240 --> 00:06:17,360 Speaker 2: age care system and can't travel. The movement disorder specialist 91 00:06:17,480 --> 00:06:21,760 Speaker 2: nurse sees them and helps them and coordinates with doctors 92 00:06:21,800 --> 00:06:28,040 Speaker 2: into state, into and the local neurologists to adjust the device, etc. 93 00:06:28,600 --> 00:06:33,560 Speaker 2: There's a new medication which is subcutaneous. Well it's it's 94 00:06:33,640 --> 00:06:37,640 Speaker 2: legadover but delivered differently. She's done a course so that 95 00:06:37,720 --> 00:06:41,599 Speaker 2: she can trial this in Darwin, whereas normally people would 96 00:06:41,640 --> 00:06:45,560 Speaker 2: have to go to Adelaide. So in the long term 97 00:06:46,000 --> 00:06:50,840 Speaker 2: it saves the government money because it will help people 98 00:06:51,080 --> 00:06:55,760 Speaker 2: stay in their workforce longer. It will reduce hospital admissions, 99 00:06:56,279 --> 00:07:01,039 Speaker 2: reduce the length of hospital admissions help them stay out 100 00:07:01,040 --> 00:07:05,280 Speaker 2: of age care longer. So it's only well, I'm eighted 101 00:07:05,520 --> 00:07:10,800 Speaker 2: to cut this position. We really need more nurses because 102 00:07:10,840 --> 00:07:16,120 Speaker 2: the one we have is extremely busy, and you know, 103 00:07:16,240 --> 00:07:19,240 Speaker 2: she's really efficient, but she's extremely busy. She has to 104 00:07:19,240 --> 00:07:25,800 Speaker 2: prioritize who she can see. And yeah, please please don't underestimate, 105 00:07:27,000 --> 00:07:30,840 Speaker 2: I'd say to the gumma, don't underestimate the importance of 106 00:07:30,920 --> 00:07:31,640 Speaker 2: this position. 107 00:07:32,360 --> 00:07:36,280 Speaker 1: Jean. I really appreciate your time this morning and continued 108 00:07:36,520 --> 00:07:40,800 Speaker 1: advocacy for people living with Parkinson's in the Northern Territory. 109 00:07:41,080 --> 00:07:43,840 Speaker 1: Thank you for having a chat with us, and we 110 00:07:43,920 --> 00:07:47,280 Speaker 1: will certainly ask some further questions about this as well. 111 00:07:48,480 --> 00:07:51,680 Speaker 2: Thank you Katie for highlighting this for 112 00:07:51,840 --> 00:07:55,360 Speaker 1: Us anytime, anytime, Jane, thank you, thanks so much for 113 00:07:55,400 --> 00:07:56,480 Speaker 1: having a chat this morning.