PROFESSOR SEANA GALL, MENZIES INSTITUTE FOR MEDICAL RESEARCH: So stroke is a really common condition in the community. One in four people are estimated to suffer a stroke in their lifetime. But we also know that about 90 per cent of those strokes are associated with very common risk factors that, if people knew about them and how to manage them, we could reduce their risk of stroke. So, we've developed this Preventing Stroke Massive Open Online Course as a free resource for the community to come and learn more about stroke, understand the risk factors, and hopefully, prevent stroke happening.
JOURNALIST: Who are you offering the course to? Is it anyone that kind of wants to learn about it? And then how will you kind of publicise it to make sure you get maximum effect?
GALL: The link is available online. It's free. Anyone can enrol, and it's self-paced learning, so people can take themselves through the content with as much or as little time as they want in a session.
JOURNALIST: Who's your target audience for this? Is there someone in Tasmania that you're particularly hoping to inform a bit more?
GALL: The risk factors for stroke occur right across the life course - they could begin developing a childhood right through to older age. Strokes mostly happen to people in their 70’s, but we certainly want to target people much earlier than that. So, the course is aimed at everyone in the community and we encourage everyone to take a look and take part.
JOURNALIST: What are some of those risk factors that people should be looking out for, or maybe not even realise it's happening?
GALL: The leading risk factor for stroke is high blood pressure, and the issue with high blood pressure is most people won't know they have it unless they have it measured. For a lot of people, the first time they know they have high blood pressure is when they have something like a stroke. So, knowing high blood pressure is really important, and that is something that can be managed through medication and lifestyle change. The other leading risk factors are things like smoking, cholesterol, poor diet, physical inactivity.
JOURNALIST: Do you find young people aren't really overly concerned about high blood pressure, maybe just because they think they don't need to be?
GALL: I think awareness of things like high blood pressure and the other risk factors for stroke are quite low across the community. But we do also know that around a quarter of strokes happen in younger people, so people under the age of 65. So this is something that occurs across the life course. It can also happen in babies and children, so it's not something that's just limited to older people.
JOURNALIST: Sure. And I read that stroke is more common here in Tasmania than any other state. Why is that?
GALL: Yeah. So, it does look like we have a slightly higher incidence rate than in other places and some of that's due to demographic differences, so we have an older population. And some of the risk factors that are associated with stroke, things like smoking, are more common in Tasmania, so that would probably explain why we have a higher rate than other places.
JOURNALIST: Sure. And yeah, do you want to talk us through this course and how it kind of works? Is it, like, over a few weeks or something? Yeah, go over what it looks like?
GALL: Yeah, sure. So we co-designed the course with community experts and also health experts, so they told us how they felt the course should function and what it should look like. So, it has a number of different modules - core modules telling people about stroke and its risk factors - and then there are options where people can choose the different risk factors they want to learn more about. You can spend as little as half an hour a week moving through these modules, or you could do it all in one sitting and it'll probably take a couple of hours.
JOURNALIST: Sure. So, I guess it's kind of a preventative approach rather than a reactive one - is that how…
GALL: Yeah, that's right. So, it's about helping people to know what stroke is, know its risk factors, and then about how they personally can reduce their risk.
JOURNALIST: Great. Elise, was there anything from you?
JOURNALIST: Yeah, I just had a quick one. Thanks, Ruby. Seana, I was just hoping you could - you mentioned the stat in your- the kind of intro bit, and I know in the media release it also says stroke is the leading cause of death and disability - I'm just wondering if that's a Tassie stat or a national stat or even worldwide?
GALL: So, there’s the statistics around one in four people suffering from stroke are worldwide estimates. And certainly, it's one of the leading causes of death and disability in Australia. And in certain age groups as well it would be a leading cause of death and disability.
JOURNALIST: Amazing. Thank you. Appreciate you clarifying that one.
GALL: Thank you.
JOURNALIST: Great.
REBECCA WHITE, ASSISTANT MINISTER FOR HEALTH AND AGEING: I'd just like to commend Professor Seana Gall and her team on developing this Massive Online Course that is going to help people access information to understand their risk of stroke, but also more information to increase broader awareness across our community.
We know that cardiovascular disease is a leading cause of death in Australia, and for Australian women it is one of the leading causes of death. One in four Australian women died from cardiovascular disease in 2022. So, the more times that we can raise this as an issue in our community to educate people, the better we are at creating some of these impacts on our family and our loved ones.
The Federal Government has established a Ministerial Expert Panel on Women's Health and the focus that we have taken this year is on cardiovascular disease. So, I'm really keen to see the way that we can expand the community's understanding of the risk of cardiovascular disease to recognise the symptoms, because they are different for men compared to women. And to do something about the fact we have delays in diagnosis and treatment for Australian women presenting with cardiovascular disease.
Moves like this one are really excellent ways for us to increase understanding across our community about what the symptoms are, but also to educate our health professionals so that they can be faster at diagnosing and treating people when they are presenting with symptoms.
JOURNALIST: So this is a women's health issue in your opinion?
WHITE: We know that cardiovascular disease, including things like heart attack and stroke, are disproportionately affecting women, because we don't have a very good understanding about the sex and gender differences when it comes to diagnosing and treating women where they present with cardiovascular disease. So whether it's stroke, whether it's a heart attack or other cardiovascular issues, this is a women's health issue. We want Australian women to have access to good information that’s evidence-based, and resources like this are fantastic ways for us to increase that knowledge right across our community.
JOURNALIST: Elise, anything from you?
JOURNALIST: No, I'm good thanks, Ruby. Thank you.
JOURNALIST: I just wanted to ask a question there. How important do you think prevention is in the role of managing the health system across Australia?
WHITE: There's always a lot of talk about how we treat people once they've proceeded with diagnosis and probably not enough discussion about prevention. So, the more information we can share with people, particularly from good evidence-based research like this course, the better we are going to be at preventing these diseases progressing to the point where somebody might have a quite a severe impact on their life.
Prevention is certainly a focus for us when we’re looking at chronic conditions across the country, including here in Tasmania, to make sure that people aren't ending up in a hospital system or having severe impacts on their lives. And so, if we can increase people's knowledge and understanding, reduce those risk factors and prevent these illnesses, that's better for them and it's better for our economy.
MATT PICONE, STROKE SURVIVOR: I’m a stroke survivor, and next month will be 7 years since my stroke.
JOURNALIST: Wow. Do you want to tell us a little bit about the lead up to that, and then when it happened, and what you remember of it, and I guess how you kind of reacted at the time?
PICONE: Yeah. It was kind of a drawn out process. It started on Sunday night. I just got this headache in the left side of my jaw. I thought, oh yeah, probably a heart attack. I'll take a couple of aspirin and see how I go. An hour or so later I was getting strange peripheral things happening to my vision. So I called out to my partner and I couldn't tell if I'd actually spoken or if I was just thinking. So we made the dash into emergency and we did all the assessments in there, and they said you're not showing any symptoms of anything dramatic so just rest up, keep up your pain relief, if things get worse come back and see us or see your GP.
Over the next 12 days, I saw every specialist I could, get my foot through the door, and I had scans around my head and shoulders and nothing showed up until on Friday morning. I had been to another appointment, came home, fell asleep on the couch, woke up and I couldn't move. I just thought, I'll just roll and tuck myself under a blanket. Dozed again, woke up and still couldn’t move. Realised that my right arm was good, pushed myself up to sit and fell to the floor. Then I realised something was really wrong and picked my left hand up and it just fell away from me. So I rang my partner. Couldn't talk normally, so I said: “ fell down, can't stand, a bit scared.”
She rushed home, called Triple Zero. We were a little bit lucky. Someone else, even younger than me at the time, was in the news having had a stroke a few months earlier. So when she said, my fiance's on the floor and he's having a stroke, she was properly listened to. We rushed in via ambulance, had a CT scan straight away, and it showed that a clot had lodged in the right side of my brain. The neuro said, this much of your brain is dead, this much of your brain is now at risk. Here's the medicine, if it doesn't work there's nothing we can do about it here.
So they started talking about giving me a lift to Melbourne. So within 12 hours of my stroke I was on the neurological ward at Royal Melbourne Hospital. I spent the next 10 days there, and the medicine fortunately did do the work. The next day I was standing and walking with somebody by my side and things got better and better, but my voice was less than a whisper. They sent a scope very uncomfortably through the nose down there, and the left side of my voice box is paralysed - still is now.
I had about six months of rehab post-hospital to get my voice back and to build up the strength that I'd lost both from the damage of the fall, and probably three weeks more or less bedridden. And then after two months, I started driving again. After four months, I returned to work. Four hours for a week to begin with. I got back to about two days of part-time work and then COVID hit. So that sort of paused the recovery and then sort of things plateaued.
Things are pretty good generally. I started fundraising for Stroke Foundation and then later Menzies through Tasmania Iconic Walks. It was in the events that Tasmania Iconic Walks hosted that I got to meet some of the researchers at Menzies and their role in the development of this movement, which was important to me as a means to give back for all the care that I've received.
JOURNALIST: I guess seven years later, is there still symptoms that you kind of- I know you spoke about your voice box, but is there symptoms that you might be doing in everyday activity and you kind of go, whoa, I used to be able to do this so differently?
PICONE: Yeah. So I was an installation technician as a full-time job before the stroke. I guess one of the sort of things where I've become quite conscious of myself is for the longest time I couldn't pick up the extension ladder and physically do that kind of work. So I don't do any of the volume of work that I used to. But when I do pick up that ladder to do a bit of roof-based work, it's one of those moments where I’m like, I’ve come a long way.
JOURNALIST: You said when you were in hospital there had just been a story recently about a person who'd also had a stroke, and said that might have contributed to how seriously they took it. Do you think if there was greater awareness around Tasmania, anyone in your situation in the future might get that care just a little bit quicker?
PICONE: Yeah, there's- I guess we're tuned into that kind of news but I do see and hear from time to time that people present with symptoms, and I was sort of told, you know, you're too young, or just manage the pain and come back if things go worse. Whereas a stroke is a genuine medical emergency and the only way to rule it out is with the appropriate scans.
JOURNALIST: When you left ED, were you trying to get a second opinion? You talked about that first 12 days.
PICONE: I guess to begin with I thought that maybe I had done something to a tooth. So my next port of call was the dentist. He referred me to a facial surgeon. Then things got worse again straight after I saw the facial surgeon, three days later. So before we'd even managed to get to the pharmacy, I was back in the emergency department and had my first CT scan. And at that stage, there was nothing showing up in my brain to say what was happening or about to happen.
JOURNALIST: What was going through your mind at that time? It must have been really scary.
PICONE: All I could really think about was just when will it end? It's indescribable all the pain that I was in.
JOURNALIST: And I guess anyone in a similar kind of situation, what would your message or advice to them be?
PICONE: To seek help and to keep seeking help.
JOURNALIST: Was blood pressure something that you paid a lot of attention to?
PICONE: I didn’t pay a lot of attention to it I did have a good relationship and a reasonably regular schedule with my GP. I didn’t have a history of high blood pressure myself. It was noted over the course of the 12 days that it was starting to go up and there was some discussions that we had after the stroke as to whether medication ahead of time might have changed the course of events.
JOURNALIST: Yeah. We’ve just got a journo on the phone as well. Elise, was there anything from you?
JOURNALIST: Yeah, hi Matt, thanks for sharing your story with us. I just wondered if you could maybe unpack a little bit of, I guess, the way your lived experience kind of helped you contribute to the MOOC and kind of tell us that journey of how you've helped get this resource together.
PICONE: This was, I guess, the question I was fearing. I can't remember a lot of the MOOC process. Thanks a lot, brain damage. I do recall that it was very collaborative. We spent a lot of time in Zoom sessions together, so myself, other survivors, as well as the researchers, discussing our experiences and then looking at some of the messages that exist in terms of trying to get people to pay attention to their own health, and ways in which we might use our stories to really drive home that message and get people to do things ahead of time.
JOURNALIST: And how important do you think lived experience is in terms of getting a resource like this up and running? I would imagine it's pretty crucial to have people who've sort of been in the shoes, such as yourself.
PICONE: Yeah, I think it's hugely important. My hope is that if we can put faces on the stories, that we can negate some of the ideas that we all tend to have that it would never happen to me. I certainly didn't believe it would happen to me. But the more I learn, the easier it is to understand that this is something that can lurk without symptoms for the longest time until it becomes an emergency. So if people do take just a little bit of time, learn a few things, the improvements that you might need to make, they're pretty basic and they're not only going to help prevent stroke, but a range of other chronic illnesses. So there's multiple ways to win with this.
JOURNALIST: And my last question, Matt, was just the feeling today at the launch, seeing it all up and ready and accessible to the community. Can you talk me through how you're feeling knowing that it's out there now and hopefully it might make a difference to people?
PICONE: Yeah, it's exciting. I'm really hoping that people will get involved and to do the course for themselves, for their kids and to really be able to have a long, enjoyable, healthy life.
JOURNALIST: Thank you so much. We really appreciate your time. Thanks, Matt.