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Speaker 1: Well, last week I was contacted by the NTI Parkinson's

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Speaker 1: Disease Support Group, which has raised concerns about losing a

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Speaker 1: specialist nurse who helps people with movement disorders. The nurse

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Speaker 1: began working with the service in January twenty twenty two

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Speaker 1: as part of a federally funded pilot project, and it

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Speaker 1: was hoped that the Northern Territory government will continue to

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Speaker 1: fund that role having been a success, but it sounds

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Speaker 1: as though that's not going to happen. Now. Joining us

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Speaker 1: on the line is Parkinson's Anti Support Group coordinator Gene Jaggs.

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Speaker 1: Good morning to you, Gene.

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Speaker 2: Good morning Katie, Gene.

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Speaker 1: Thanks so much for your time. Now, firstly, what is

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Speaker 1: a movement disorder's specialist nurse.

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Speaker 2: Well, the movement disorder specialist nurse. It's just a nurse

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Speaker 2: that specializes, obviously in people with movement disorders. There's a

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Speaker 2: number of them in the territory, the main group being

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Speaker 2: people with Parkinson's and Parkinson's, plus it also includes people

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Speaker 2: with Tourette's a taxia, Huntington disease, essential tremor estonia. So

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Speaker 2: there's a number of movement disorders, but the greatest group

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Speaker 2: is probably people with Parkinson's in the territory neurodugenitive disease

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Speaker 2: in Australia and more people are being diagnosed all the time.

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Speaker 2: It's a complex disease and hard to manage. Yea and

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Speaker 2: she and the specialist nurse just helps people.

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Speaker 1: So how vital has that nurse been for people with Parkinson's.

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Speaker 2: She's made a huge difference to the people with Parkinson's

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Speaker 2: in the territory she's. Her role consists of a couple

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Speaker 2: of different components. One is education of the person with

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Speaker 2: the movement disorder, to cares of those people and to

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Speaker 2: health professionals. That might surprise people to know that the

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Speaker 2: biggest problem, one of the biggest areas where people with

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Speaker 2: Parkinson's tab is when they're actually in the hospital because

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Speaker 2: the disease is not understood very much, and for instance,

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Speaker 2: medication is extremely important, has to be given on time

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Speaker 2: and in hospitals often that doesn't happen. It's when they

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Speaker 2: get around to it, and with Parkinson's it makes a

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Speaker 2: big difference. The other aspect of her role is clinical,

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Speaker 2: so she helps the person in the beginning accept the

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Speaker 2: diagnosis and educates them about their lifestyle, helps them get

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Speaker 2: their medication right, helps them manage their symptoms and facilitates

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Speaker 2: access to care and care coordination. And if she may

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Speaker 2: need referral later on for advanced therapies, they do that.

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Speaker 2: And then right at the end of life politic care

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Speaker 2: they help. She helps with relief of symptoms and distress.

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Speaker 1: So, Jane, it sounds as though these specialist nurse has

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Speaker 1: done quite an incredible job throughout the trial.

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Speaker 2: Yes, Yolanda is the nurse. If she didn't have the

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Speaker 2: knowledge already, she wouldn't have been able to make such

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Speaker 2: a difference. But because she already had the knowledge in

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Speaker 2: this area, she was able to help people right from

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Speaker 2: the beginning. She's won the Nurse's Federation and Midwife Nurse

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Speaker 2: of the Year for her role, and she's had to

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Speaker 2: set up the role from scratch and she's done a

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Speaker 2: great job. She brought in a speech pathologist to help.

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Speaker 2: That's an area that is a problem with people with Parkinson's.

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Speaker 2: Would like to hang on to the speech pathologists too

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Speaker 2: if possible ability of life. But it helps the cares too,

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Speaker 2: and in the long run it will help the government

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Speaker 2: because it's people who are young onset Parkinson's. People can

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Speaker 2: stay in employment longer. If the disease is managed correctly,

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Speaker 2: they get a better people have a better outcome in

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Speaker 2: their life. It reduces the amount of time there to

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Speaker 2: see the neurologists, reduce hospital admissions, reduce admissions to specialist care,

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Speaker 2: reduce the number of days in hospital, and delay admission

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Speaker 2: to residential care. So studies have been shown. Studies have

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Speaker 2: been done in Australia and in other countries that show

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Speaker 2: the benefits of employing the specialist Parkinson's nurse are fight

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Speaker 2: or movement disorders nurse who has to know more than

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Speaker 2: just the Parkinson's. They're five to seven times greater than

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Speaker 2: the costs involved in employing the nurse in the first place.

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Speaker 1: The government look, I think it made incredibly clear the

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Speaker 1: wonderful work that the nurse does. Can you tell us

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Speaker 1: how many territorians are impacted by Parkinson's.

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Speaker 2: Well, I know about there's over two hundred people in

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Speaker 2: an author territory with Parkinson's. There's around forty with a

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Speaker 2: typical Parkinson's which comes under the umbrella Parkinson's, and plus

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Speaker 2: there's other people with other movement disorders that I don't

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Speaker 2: know about. I'm the coordinator of the Parkinson's groups. Yes,

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Speaker 2: that's mainly what I know about.

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Speaker 1: So, Jeane, what are people in the Parkinson's group saying

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Speaker 1: to you as this trial comes to an end and

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Speaker 1: it is looking as though this wonderful, award winning nurse

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Speaker 1: isn't going to be able to stay in the job.

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Speaker 2: Well, they're just devastated. I mean, in the past, a

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Speaker 2: lot of people, well a number of people didn't even

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Speaker 2: access their healthcare here. They'll go South because you know,

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Speaker 2: they didn't get the help they needed up here. When

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Speaker 2: before the Parkinson's nurse or the Movement Disorders nurse was

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Speaker 2: thirty one years I would bring into state, but they

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Speaker 2: don't have all your details, They can't give you specific answers.

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Speaker 2: They can only talk generally. And West Australia did send

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Speaker 2: a nurse up when we were under therembrella Westness Trail

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Speaker 2: Parkinson's for a few years. Then we're under the umbrella

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Speaker 2: of Parkinson South Australia and we can't do the same there.

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Speaker 2: So people are on their own basically, and it's a

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Speaker 2: complex issue and their health is just going to suffer

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Speaker 2: and in the long run the government will pay for it.

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Speaker 1: Well, this is the thing, right, Like I think across

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Speaker 1: so many different you know, different health sort of sectors

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Speaker 1: around the Northern Territory. If you don't actually have a

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Speaker 1: specialist nurse or somebody that works in that area here

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Speaker 1: in the Northern Territory, there's going to be the long

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Speaker 1: term detriment to Territorians. And you know, we might we

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Speaker 1: might be thinking, all right, we can save a few

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Speaker 1: bucks here by not having the specialist movement disorders nurse

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Speaker 1: based here in the NT. But fundamentally, all of the

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Speaker 1: people suffering from Parkinson's are still going to need someone,

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Speaker 1: They're going to need support, and so it is going

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Speaker 1: to cost us money in the long term. I mean, Jean,

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Speaker 1: when you look at the fact that this trial has ended,

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Speaker 1: so that was obviously funded by the federal government. But

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Speaker 1: what would we need to have happened here? Will we

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Speaker 1: need the Northern Territory government to step up and fund

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Speaker 1: the nurse.

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Speaker 2: The Northern Territory government needs to step up. That's what's

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Speaker 2: happened in Victoria. Victoria had four of these nurses under

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Speaker 2: the same pilot programs and the state government has taken

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Speaker 2: them on. They've funded those positions, and other states the

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Speaker 2: same things happened. If we don't have this one movement

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Speaker 2: disorder specialist nurse that we have, we will have none.

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Speaker 2: Every other state or territory in Australia has more than one.

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Speaker 2: New South Wales has twenty one. Obviously they want to

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Speaker 2: higher population has. Maine is only two and a half

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Speaker 2: times the population of u much smaller area to cover

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Speaker 2: and they have six.

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Speaker 1: Wow.

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Speaker 2: And yet and yet we are facing losing the one

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Speaker 2: nurse that we have. We could ideally have two, one

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Speaker 2: learning the ropes and filling in when Yorlanda is away

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Speaker 2: because it takes at least two years for the person

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Speaker 2: to learn the physition properly. A good Parkinson's nurse can

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Speaker 2: recognize the sense organ to them if you go to

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Speaker 2: the hospital. Most nurses wouldn't know the difference of having

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Speaker 2: too much in the symptoms signs and symptoms of not

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Speaker 2: enough and too much. So she can just do it

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Speaker 2: and it's just yeah, it's short sighted of the government

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Speaker 2: if they don't fund it, it's false economy.

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Speaker 1: How long until she's due to finish up.

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Speaker 2: The funding runs till the end of March, but we

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Speaker 2: are trying to promote it as much as possible now

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Speaker 2: because there's you know, Christmas, New Year, not a hape

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Speaker 2: of a lot that's done and now time. So you know,

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Speaker 2: you've got the professional, Jesus, the professional. She's in this

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Speaker 2: role and people want to know what's going to happen

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Speaker 2: with their roles. She's started, she started this position, she's

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Speaker 2: worked with all these people, and now she's if she

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Speaker 2: doesn't get funded, she's got to turn around and say, sorry,

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Speaker 2: I can't help you anymore. Well, they're on your own

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Speaker 2: and devastating.

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Speaker 1: It would be utterly devastating for her. Nurses by very nature,

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Speaker 1: you know, they care for people and they are Every

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Speaker 1: nurse I know loves what they do and it sounds

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Speaker 1: as though she does an absolutely incredible job here in

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Speaker 1: the Northern Territory. So Jean, let us get in contact

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Speaker 1: with the Health Minister's office. Let us see whether this

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Speaker 1: is something that's on their agenda. Have you have you

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Speaker 1: been in contact with the Health Minister's office.

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Speaker 2: I have emailed the Minister for Health, mister Edigen Offers,

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Speaker 2: and so far admittedly they have only just yeh got

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Speaker 2: into government and I've been told he's very busy. We'll

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Speaker 2: get back to you. Can I say one other thing

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Speaker 2: at present? People in the Northern Territory in the public

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Speaker 2: health system have no access to advanced therapies. Once the

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Speaker 2: medications oral medications, once you've gone as far with them,

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Speaker 2: there are advanced therapies, but currently they're not available for

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Speaker 2: people under the public system in the Northern Territory. People

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Speaker 2: who've had it have to go south and fund it themselves.

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Speaker 2: They are the neurologist neurology team at the hospital are

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Speaker 2: trying to make the pathway for people to access at

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Speaker 2: day therapies with Tally Tallyhealth with Royal Adelaide, and then

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Speaker 2: we have to go south. Like my husband, they're considering

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Speaker 2: him for a different form of medication which is goes

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Speaker 2: straight into the cup, so he would have to go

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Speaker 2: to Adelaid for the trial and then he would have

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Speaker 2: to come back up here with this new treatment. Now

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Speaker 2: no one in the treatment, no one in the territory

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Speaker 2: presently has that treatment. Yes, so I have knowledge because

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Speaker 2: I have a nursing background, but I have no knowledge

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Speaker 2: of this. If something goes wrong, who do I call?

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Speaker 1: That's exactly right, Well, Jean, he.

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Speaker 2: Will hospital where the Parkinson's or the movement is or

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Speaker 2: the specialist nurse. I can contact her. She can help me.

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Speaker 2: It avoids a hospital admission and you know, everybody's better off.

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Speaker 1: Yeah. Look, Geene, I'm gonna go a bit rogue here.

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Speaker 1: It's also people have got the absolute shits with the

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Speaker 1: fact that we cannot access, you know, specialist services here

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Speaker 1: in the Northern Territory. If if somebody is dealing with

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Speaker 1: an issue like Parkinson's, why should we have second rate

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Speaker 1: services comparatively to as you've pointed out Tasmania for example. Yes,

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Speaker 1: they might have double our population, however they've got six

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Speaker 1: of these specialist nurses. We've got to start to look

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Speaker 1: at this a little bit differently, and and you know,

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Speaker 1: look at the fact that it is. It's also we

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Speaker 1: you know, like you want to keep Territorians in the

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Speaker 1: Northern Territory. If you're not able to access the health

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Speaker 1: care that you need, it is the fastest way to

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Speaker 1: see people leaving if they're in a position to do so.

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Speaker 1: That is the last thing we want, you know, we

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Speaker 1: want to try and keep our population here. We want

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Speaker 1: to grow our population. We've got to make sure that

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Speaker 1: there are indeed the health services that are required to

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Speaker 1: keep people here.

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Speaker 2: Yeah, that's correct, Jean.

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Speaker 1: Let us see what we can follow up. Let us

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Speaker 1: see what we can find out. Thank you for putting

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Speaker 1: it on our radar, because quite frankly, unless you have

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Speaker 1: got a loved one who's dealing with Parkinson's or another

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Speaker 1: movement disorder, you simply would have no idea that this

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Speaker 1: is a situation.

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Speaker 2: Yeah, that's correct. And people with Parkinson's, one of the

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Speaker 2: things is fatigued, so they don't have a lot of

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Speaker 2: energy to do this sort of advocacy. Sorry, thank you

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Speaker 2: for promoting it, and thank you for what you're doing.

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Speaker 2: I appreciate it anytime, and people with barkinson will appreciate.

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Speaker 1: Anytime you keep us in the loop, will keep you

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Speaker 1: in the loop if we hear from the Health Minister's office.

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Speaker 2: All right, thank you so much.

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Speaker 1: No worries, Jane, thank you, you two