Preparing for emergencies and extreme conditions

In the spirit of reconciliation, MS Plus acknowledges the traditional custodians of country throughout Australia and their connections to land, sea and community. We pay our respect to their elders, past, present and extend that respect to all Aboriginal Torres Strait Islander peoples today.

Jane: Hello and welcome to our webinar this evening on preparing for emergencies and extreme conditions. My name is Jane. I am one of the presenters and facilitators tonight and shortly I will introduce you to all of our other lovely presenters as well. It's important that you note that the content provided in this presentation is a general guide only and it's really important for you to consider your individual circumstances and consult with appropriate professionals for specific advice.

So, who do we have with us today?

I am a registered nurse and an internationally certified MS nurse, and I've worked at MS Plus as an MS nurse advisor since 2017. I've recently also taken on the role of a volunteer firefighter with the CFA, so I know a tiny little bit about that as well. We are also fortunate to be joined by Eilish McGuire.

Eilish is the National Lead of the Urban Climate Resilience Program at the Australian Red Cross, where she plays a critical role in building community and individual resilience to climate related disasters. Throughout her career, Eilish has been an advocate for vulnerable communities and has worked to support those in need. Her background in community development, project management and advocacy has enabled her to make meaningful impact on the humanitarian sector. Eilish, do you want to say hi?

Eilish: Hello everyone, thank you for having me.

Jane: And you look so perfectly like your picture Eilish, it works perfectly.

We also have Associate Professor Yvonne Learmonth. Yvonne is an accredited physiotherapist who specializes in health behavior in multiple sclerosis. She's an Associate Professor in the School of Allied Health at Murdoch University and her work has systematically focused on physical activity and its measurement, consequences, intervention and promotion in persons with MS. She has led a research agenda on accessibility of healthcare for Australians with MS for three years and her research has been continuously funded for over a decade, wow, through grants from the National Health Service, National MS Society, MS Australia. The Perron Institute, the Western Australia Department of Health, and the University of Melbourne.

Welcome Yvonne.

Yvonne: Hi Jane, thank you for having me.

Jane: Thank you for being here. And last but not least, we have Associate Professor Claudia Marck, who is an Associate Professor in the Disability and Health Unit at the University of Melbourne. Her work focuses on how health behaviours and other modifiable factors influence in the health and wellbeing of people with MS. She has published around 50 papers on MS and regularly presents her work at national and international conferences. She receives funding from a Multiple Sclerosis Australia Fellowship and grants from the University of Melbourne, MS Australia, the Melbourne Disability Institute and QUIC to carry out her research on MS.

Welcome Claudia.

Claudia: Thanks very much for the introduction, Jane.

Jane: You're welcome. So, we're going to kick off with Eilish who's joining us from the Red Cross. Eilish, if you could start by telling us a bit about how the Red Cross supports people with MS in building resilience and preparedness for climate related emergencies.

Eilish: Yeah, absolutely. Thank you, Jane. So Red Cross has a long history of working around the world when it comes to disasters. But in Australia, we've been working for years within a resilience response and recovery context, supporting communities to I guess ease the severity of any emergency as it happens. We take an all hazards approach here at Red Cross, so any and every disaster that could potentially happen is something that we factor into all of our resilience planning.

And when we're communicating with individuals and communities, those are things that we take into account. We know that emergencies create stress for individuals and communities and they can have quite a large impact on people's lives. And we, we know that this stress it causes people to not think clearly. It can exacerbate any health conditions they may have. It may cause you to fear for your life or to fear for the lives of people around you and people that you love. And so being prepared is something that is a really. to help ease the stress of an emergency as it does happen. It can help you avoid danger. It can help you to have a clearer mind during an emergency, and it can then reduce the disruption that that emergency may have on your life.

Red Cross have developed an emergency ready plan, which is our main offering when it comes to an all hazards emergency plan. And it has four very clear steps in it, as you can see on the screen. So, we've got the get in the know, which is all about how knowing about how an emergency may impact you and looking at things that may be coming this summer. We're always talking about fires. We're always thinking about floods, but also the context of heat waves as well. It's important to factor any preexisting health conditions like MS into your, into your emergency plan and think about how you may specifically be impacted by that whether the heat may cause you to become weaker or feel more exhausted whether potentially if there's something like smoke and that could be impacting you. We really encourage people within this get in the know step to talk to their doctors and think about what specific things could be of danger or something that you may need to factor into any pre-planning for an emergency.

That getting in the know portion of the plan is also really important to think about what emergencies may happen in your area. We know that I think if you live in a hilly area, there's always fires or something that is something you need to factor in. But looking at the hazard maps from councils, thinking about what other emergencies or what other natural disasters have happened in that region in a while and speaking to people who have been living there for years, because the people who have lived experience in your, in your area are always going to have that information. And then thinking about you know, what weather forecasts you can look at and keep up to date with to know when things are going to happen. A really key part of the getting in the know portion of a ready plan is thinking about your personal response capacity. So, thinking about what is within your control during your day to day things and then thinking about what would change if you were stressed. So, if an emergency happened and things may escalate, thinking about if you had to leave the house, would you need to go to an evacuation centre? What would you need? What would you need help with? Do you need someone to go and pick up the kids from school, for example? And factoring all of those things and any potential option about what could happen into your plan.

The Get Connected element of the Ready Plan is all about thinking about the people that are around you. And so at Red Cross, we know that the people that are most likely to support you during an emergency are actually the people who are closest to you. So rather than it being emergency services, for example, we see that it's usually neighbours and family who are the first responders for many people. And so connecting with the people around you is one really key way to ensure that the impacts of an emergency will be lessened. So, identifying your personal support network and communicating your plan with people and talking to them and creating it with them in mind will be a really great way to actually think about what your options could be in case of an emergency. And that'll also mean that if something does happen, everyone will be aware of what their responsibilities and roles are, so there's never anything left in question.

The getting organized portion of the Ready Plan is all about thinking about how you can gain control over your situation if an emergency does occur. So, it can be about planning to survive an emergency and also planning to recover. So, within the context of a fire or a flood, it's thinking about what were the things that you would need in those first 24 hours if you had to go to an evacuation centre, for example. So, thinking about your medication, thinking about food thinking about those things that you really will need to get you through those first 24 hours. But then thinking about the longer term. So, what happens after the emergency? What happens when you return home? Do you need prescriptions that you that would be for longer term? Do you have any special items that you may you know, you'd be really missing if you didn't have them with you? And thinking about other key documents like insurance documents. The numbers and details of any of doctors or specialists and things like that, having that all together and prepared. So, by the time an emergency does happen, it's all ready for you and it's together.

And that's where we sort of get into the get packing portion, which is where we packing an emergency kit becomes quite important. And, thinking about those survival items and the recovery items and putting them together in something that is easy and accessible for you if you did have to leave the house at a minute's notice. So having this preplanning done and thinking about everything that you might need to take with you is going to be very helpful. And so we have people around, around the country who have a couple of extra months of medication stocked up. We have people who, you know, in thinking of the context of heat, have little esky bags that they can put it in if there are things that are temperature sensitive and having that all in one very easy place so that anyone in the household knows where it is and what to do with it.

Jane: Thanks, Eilish. That is such a good way of talking through everything from woe to go and. Also speaks to the level of detail that can be involved and how well you can set yourself up with time in terms of being considered. In terms of things like heatwave, bushfires, floods or other climate related disasters, are there specific considerations that people with MS should take into account when they're thinking about not only their safety but preparedness as well?

Eilish: Yeah, absolutely, Jane. And I think I very quickly touched on an individual's response capacity which is very specific to that, that one person. So, thinking about things that on your best day that you may still struggle with. Thinking about what is the worst case scenario. So, if you were having a particularly bad day and you were feeling like you were less able to be independent planning ahead for who could support you during those times and having a really clear understanding of your own capacity to respond in that emergency will mean that when something does happen, you'll have a very clear idea of are and the people that could support you most. And we know that fires and floods and situations where evacuations are particularly important that is one thing. That's a lot of communication and planning around transportation, but also then looking at heat waves and on times where we're, it's recommended more that we stay within the home.

We know that the people who are most impacted by heatwaves are usually people who are home alone, not connected with anyone within their community. So, thinking and talking to your doctor about how heat may impact you and what are some of the best ways that you could prevent heat related illness is a really clear way to start planning and thinking about how your condition may be impacted by something like heat and having a plan for what that would look like. So, if it means that you will go to, a friend's house, if it means you'll go to a public space if it means you'll stay home, but you'll have your air conditioner on and you'll also have, I suppose a trigger point for thinking, you know, I'm not feeling well, I'm going to take action. Being aware of what could go wrong. So, you can plan for it and have those points where you say, okay, now it's time to, to go and change my behavior and do something else and get help or call a doctor. Having that in mind early is really important. And having that connection with the people around you who do support you on a daily basis, that is going to be the most important thing when it comes to all emergency plans.

Jane: Thanks, Eilish. We're going to move on now to Associate Professor Yvonne Learmonth and Associate Professor Claudia Marck. So, take it away.

Yvonne: Hi, Jane. So yeah, I'll start us off, but this project definitely is a strong collaboration between myself and Claudia, and I just wanted to also acknowledge the, the many other individuals that have made our research possible over here, and Western Australia with Drs. Tan and Professor Skeffington, and also Neurologist, Professor Alan Kermode, and a person who herself lives with MS, Professor Diana Walker. And then over in Melbourne, we also collaborate strongly with Professor Lisa Gibbs, and down in Tasmania we collaborate with Professor Ingrid Van der mei and some of you might be aware of her work from the Mendes Institute.

So, our project that we've actually been working on for a number of years is entitled Crisis Resilience and MS, but I'm going to talk to you today about some of our findings directly from that.

So that's project. Of course, as I mentioned, there's a collaboration across Australia. Now, why is it important? I think Eilish outlined that quite well earlier on we're facing a summer ahead where there might be a lot of heat waves and potential bushfires. In the last few summers, we had to contend with many floods and of course the global pandemic. But prior to that, over here in Western Australia, there was quite an intense flooding period in 2019 where people really couldn't access their healthcare providers and at that time we started looking into this in more detail.

We also know that people who have got chronic health conditions such as MS or have disabilities are disproportionately affected when crisis and emergencies happen. This might be because of their higher health care needs, but also might be because of some of their symptoms, mental health symptoms, physical symptoms, which might mean that they can't act as quickly as others. And really, preparing for disasters can help mitigate the risks and reduce the impact of events in the long term.

So, moving on. Jane, please. Yeah, so this project that I was talking about that's been going on for nearly three years now specifically wanted to identify the issues experienced by people with MS and their carers during emergencies and disasters. And we wanted to identify how we could reduce the impact of these disasters on health and well being and that touched on two topics. So, it's long term health, if your immediate health changes due to an emergency or if your immediate habits change just due to an emergency. How can you retain that in the long term? But also how can you retain good access to health care? And what we've done over the last few years is send out a lot of online surveys to individuals. We've done a lot of interviews with people with MS and with carers and with health care professionals and throughout each stage we've always touched base with those individuals again to help us progress the project. And projects have been funded primarily by MS Australia and also from some grants from the Melbourne Disability Institute and the University of Melbourne

And on the next slide, I just want to highlight the different steps that we took in the project. So, of course, looked at what was happening already in the literature and then we did undertake those interviews with individuals with MS and their carers. And we've asked them lots of questions through surveys and then a year later we touch base with them again to find out how things might have changed. And remember we of course had that long term global pandemic but also two seasons of hot weather and a second season that had quite significant flooding over in the east coast of the country.

And the overall aim is really to see if we can help, work with individuals with MS to develop a preparation plan and at the moment we're now collaborating with the Red Cross to do that, but we'll touch on that more later on.

So, if you could just move on for me, please Jane Yeah, and this is just a little debrief more about how we have consumers, individuals with MS and their carers involved in our study. So we've gotten them together to get feedback from them and we update them on how things are progressing every six months or so. But what is really important is that from people with MS and their carers and healthcare providers, we learn really what their experiences are. Because we as researchers, we don't have all the answers and we really do need to learn from individuals about how to make their access to healthcare and their positive health options and choices better.

So moving on this is just a small slide for anybody who is particularly wanting to do some reading late at night. These are just a list of some of the studies that we've actually published and that all of them I believe are openly available and perhaps we can speak with MS Plus and they might list these up after the webinar.

Claudia is going to take the next section of the talk.

Claudia: Yeah, thanks Yvonne. And thanks also Eilish for providing all of that very important information. I just wanted to take a little pause and for everyone to just reflect a little bit about whether any of your health behaviours changed during COVID. So, you know, obviously COVID affected all of us and in different ways, depending on where you were in the country, we had pretty, harsh lockdowns other parts of the country it's not so much, but it impacted on all of us. And so I just wanted everyone to just take a minute to reflect on whether any of your health behaviors changed during that time. So, for instance, your exercise, physical activity, your diet, your sleeping patterns, your alcohol consumption whether you were, you know, regularly taking your medication or perhaps not so regularly. And also, smoking or vaping behavior. And as you're thinking about that, I'm also wanting to think, get people to think about, were you able to, when the COVID pandemic sort of eased up a little bit, were you able to then kind of go back to your healthy habits? Or, for instance, some people may have actually increased some of their healthy habits, they may have taken up different exercises or may have started eating healthier. So just kind of reflecting little bit on what the impact was of that crisis on your health behaviours.

One of the reasons I'm interested in that is so this paper that we published in 2020 we surveyed people quite early on in the pandemic, so that was the first year of the pandemic, and we surveyed 113 people with MS, but we also interviewed people with MS as well as MS advocates, healthcare providers, and two carers, and we asked people about the impact of the COVID pandemic on their health behaviors. And so there's a little graph there at the bottom of the screen, and you can see physical activity saw the most change. So, there were very few people who told us that their exercise habits hadn't changed at all. Most people had seen a decrease, so they had they did, they were less active than they were before COVID. And but also there was about 20 percent of people that said they had increased their exercise. So, the COVID pandemic actually helped them do more exercise.

In terms of healthy eating, we saw there was a big increase in unhealthy eating, so a lot of people probably eating, you know, chips and chocolate and other things. Very few people said they had decreased their unhealthy eating, so that wasn't good news. In terms of their normal sleeping pattern, we also a lot of people they weren't sleeping well. In terms of alcohol consumption quite a big proportion of people said they had increased their alcohol consumption. And then in terms of medication adherence and tobacco smoking, we didn't see that much change. And then in the interviews, people provided us with some quotes. So, this first one that you can see on the screen was a MS nurse, I believe, that provided us with this quote. And they said, after 14 weeks of not moving about her patients with MS, her mobility has really declined. And it's deteriorated with just not being able to get out and exercise. And, you know, with a daily work routine. Another person with MS told us the rate at which I lose fitness and the battle to get it back. So, if I lose fitness during, just during the three month lockdown, it's going to be so much harder to get it back than a regular healthy person. So that's my number one concern. So this person was really concerned about that in terms of the COVID pandemic. The stress eating, so I already mentioned that a lot of people increase their unhealthy eating habits. And this person also highlighted for us. You know, I'm really stress eating a lot more. I'm eating a lot more bad food as opposed to good food.

Another MS nurse told us the MS patient had quite a resilient response to the COVID pandemic. They were cycling and walking to keep up their exercise. And I guess that's a good example of potentially people who find other ways to stay active, even though they couldn't go to the gym, maybe, or maybe they couldn't go to the pool, or they couldn't get to their physio. A lot of people found you know, ways to exercise and to stay healthy during that time. Next slide please. That's Yvonne again.

Yvonne: Yeah, so Claudia gave us a really good background of what was happening closer to home in Australia during that first year of the pandemic. And we've actually been part of a larger international study similar to the Eurovision Song contest where Australia randomly can take part. We joined a lot of countries in Europe to identify changes in physical activity for people with MS. And although this is quite a technical slide here, and I do apologize about that. If you can take a look the graph there, and on the graph it's different types of physical activity that might be going to the physiotherapist or physiotherapy at home that might be going to the gym to do exercise. And you can see number three, which is going to the gym to do exercise. That reduced a lot in comparison to before the emergency. That was the pandemic. But interestingly, the fourth. option of physical activity, which was walking, there was quite a big and significant increase in that. Now, that was good and that's great during the pandemic, but of course there might be some emergencies where getting that form of physical activity isn't appropriate.

For example, if there's bushfire, such as we had three years ago, and there's smoke in the air, it might not be appropriate to get out to do walking. So, towards the end of the talk today, we will be talking about physical activity more and what you can do in emergencies. But just think about your options.

We can also see that other positive types of physical activity might actually have increased a little bit during the pandemic. So, people were cycling more and again, this is a European study. So, such like in Australia, we do like our bikes over in Europe as well. But definitely overall we saw differences in the type of physical activity people were doing. And that orange box helps explain why. And we definitely experienced some of these things in Australia. Venues where you could do exercise were closed down. There was restrictions in place from local, state and national governments. And there were cancellations of access to social activities. And again, if you anticipate that these might happen, and if physical activity is something that you find important to maintaining your health, which of course I'm going to promote and tell you that it is something we should be thinking about how are you going to maintain this in the longer term after an emergency? Of course, in the acute phase of emergencies, it might not be a main priority, but afterwards, how can we maintain that? And we'll talk more about that later. So, I think we're back to Claudia for the next slide.

Claudia: Yeah, so we also asked people what other concerns they had during crisis. And of course, the impact of bushfire smoke and COVID infection, particularly on MS and whether that might, you know cause a relapse or, you know, cause certain symptoms was a big concern of people, especially during the pandemic acute phases of the crisis. A lot of people, especially at the start of the pandemic, told us they were really unsure where to find reliable information. And then as the vaccines came out it took a little while for that information to reach people with MS about, you know, whether it was safe or not. There were a lot of concerns around access to GP, to medical tests. For instance, MRIs and also allied health professionals, so physios, for instance. This person who was a carer of someone with MS said, we got a call from neurologists saying that you need to change to a more potent immune suppressant. However, not while we're going through this pandemic. So, we have to delay the MRI for six months and then we will review. So, this you know, caused a lot of concern in the carer and the person with MS about delaying all of that.

There were also a lot of concerns about vulnerable people especially when it came to evacuation. There were concerns about social isolation, so people who were completely isolated and you know, weren't seeing any, anyone which wasn't good for their mental health. But there were also some concerns that there that people might be more vulnerable for neglect and abuse. And then there were some concerns about in home care, especially with carers who may not have been vaccinated or may not want to be vaccinated or whether there was enough PPE available for people that had to come and visit your house.

And this service provider from Victoria said, you know, this was in relation to bushfires, actually. Half my organization, in the space of two hours, we had to go through our entire client list and determine who's vulnerable. Will they need support to evacuate? And so that put a lot of stress on that service, obviously, to sort of determine who's going to be the vulnerable people that we really need to think about.

And then another quote from a person with MS in Queensland. They told us, I don't actually know what facilities there are in my town for evacuation. I really need to look into that because I use a walker. And the thought of having to go to a center horrifies me, to be around lots of people, potentially restricted access to a toilet. So, this person was quite anxious about that, and thought that alleviating the anxiety could be done through actually contacting the facilities to find out more. Back to you, Yvonne, I think.

Yvonne: Yes, so obviously during emergencies one option to access healthcare might be through telehealth, which telehealth has been in place in Australia for many decades now, but of course over the past few years it's become more commonplace. So, if the topic of today's overall talk is about preparing for crisis, then maybe thinking about using telehealth might be an option. So, we looked at this as part of a study in collaboration with the Menzies Institute and they, they undertake a study called the Australian MS Longitudinal Study. Some of you listening today might take part in that already. And survey questions are sent out every six months to identify how everyone's life is and what is happening. And in that first year of the pandemic, we asked people about accessibility and use of telehealth. And we wanted really to know what the priorities were for telehealth for people with MS. And what we found that there was a bit of a reduction in the overall health care access and the quality of care in comparison to traditional in person care but look at that. Almost everyone had a good or very good experience with telehealth. So, if you aren't already considering using it, for some communication with your health care provider, it might be important. It might be an option.

What people are looking for is guidance on preparing for online consultations. So, what might be good to do ahead of any potential crisis is to try out telehealth as an option, maybe with your doctor or your nurse. And we definitely know that it's becoming more available. Of course, we acknowledge that there is a lack of some physical assessments and physical care, but if you haven't already considered telehealth as an add on to your usual communication, it's a good option.

And next up here, we have a focus on carers of people living with MS. And this is a different study that I actually did in collaboration with Helen Correa. She's a psychologist over here in Western Australia. So, I learned lots working with her. And here are some quotes about the experiences of carers with MS during times of emergencies. So, this person is saying, it’s a lot harder when they're only at home and they can't get out to treatment. And they weren't very mobile, so it was much heavier for them as a carer to look after their loved one. And they had to do that for about three months during the pandemic without getting usual access to healthcare.

However, here's some more positive experiences from some carers, although they weren't able to make an appointment with the GP, that meant that they didn't have to use up all the available energy, the person that they cared for didn't have to use up all their available energy, and that meeting with the GP was more successful because of that.

And then we also noted that a lot of museums etc were closed during the pandemic, but you can go online and you can socialise in that way too, and that can be useful in that tight relationship between a carer and their loved one when they're looking for options to engage in things they can do together.

And then there is other aspects of negative impacts of emergencies during that we heard about during the study, and it's often when access to usual care gets cancelled. So, I guess just again a reminder to think about ahead of a crisis happening, how can you maintain that access to health care? And carers can think about this too, and it's important to plan for emergencies together.

And we're almost through our presentation of slides now, and this is just a summary overall. To say that being prepared is a critical component of health care. The better prepared you are, the more likely to have good outcomes and better health outcomes. So, preparing yourself and others that you live with is important to do in the long term. We've gotten a little bit ahead of ourselves, but this slide is for Claudia if you want to jump in.

Claudia: Yeah, just briefly, so we're getting to the end of our slides, but we used the Australian MS longitudinal study to survey people with MS to ask about whether they think it would be useful to prepare a crisis response plan. So, we had about 1500 people with MS respond to this survey. And as you can see here, about 30 percent wanted to actually prepare a crisis response plan a few people said we have a plan, but it needs updating and then there was about 14 percent of people that said I'm not sure whether I need it.

When we asked those sort of 50 percent when you count that up, it's about 50 percent who said they either want a new plan, they want to update a plan or they're not sure whether they might need professional assistance about a third of people said yes, I would like some assistance with that. You can see that most of those people were hoping to get help from an MS healthcare provider or MS nurse or support worker. And that the type of crisis plan that would be most useful was a general plan. So, most people, 45 percent of people said, I would like a general plan, followed by fire, isolation or floods specifically.

So just the current stage of the project, we're sort of towards the end of our project. We reviewed existing resources and toolkits that could help people prepare, people with disabilities specifically prepare for disasters or emergencies. And after feedback from stakeholders, we decided to trial a disaster, a certain disaster preparedness plan in about 25 people with MS. So, we are trialing this in people with moderate to severe levels of disability who live in a disaster prone area. So that could be floods or fires or heat waves, which is, I think, at the moment, all of Australia. And we're getting assistance with that from MS nurses, including Jane, which is wonderful. So, stay tuned for results on that. Hopefully next year we'll be able to present more on that.

Jane: Thank you, Claudia. And just a couple of questions for you before we move on. I've got a question for Yvonne, actually.

Yvonne, how does maintaining physical activity and a certain level of exercise, how does that contribute to someone being prepared in the face of these kind of climate related challenges? What do you know about that?

Yvonne: Yeah, so of course, this is one thing that we can potentially do to help ourselves ahead of, ahead of any potential emergency or crisis situation happening. And it really is helping prepare you to act and to recover as best as possible and, and prior to any event happening. So, on this, on this slide here, we can see that. Resilience, which is your ability to bounce back from events, and physical activity are actually quite strongly intertwined. If you are a more resilient person, it's likely that you might also be more likely to do physical activity. Equally, if you are somebody that does a lot of physical activity, you might well be more resilient.

What we also know is that both of these resilience and physical activity levels are lower in individuals with MS. Of course, many reasons why this may be and they have a long term health condition and with that there's many associated life changes and many associated symptoms. But it also may be difficult for them to be physically active I know that we are very fortunate to be physically active So it can be a challenge for lots of people But if you think about this and you can put plans in place right now to do a little bit more physical activity it can improve your mental health, your quality of life, and your fatigue management. And all of these things are better placing you to prepare for emergency events that you might not expect to happen. And although I'm talking about physical activity, this is true of other health behaviours as well, which Claudia is definitely more of an expert to talk about than I am, but if you prepare things like having a healthy diet, sleeping well and minimizing your use of substances such as tobacco or alcohol. Again, you're better preparing for your preparation for emergency events.

Now, this is a little slide that I am not going to make you read all of, but I always take the opportunity to remind people with multiple sclerosis that there are opportunities to be active and that can, it doesn't need to be running a marathon. It doesn't need to be going to the gym all the time. You can be walking a couple of days a week and that really is beneficial for your health. So, I know it's a complicated table but really if we can try and do a little bit more exercise ahead of any potential events happening, it makes your body stronger and more resilient to anything that may come at us.

Jane: Thank you. And I'll just leave this slide up for a moment while I ask Claudia a question. Me and Yvonne had a joke before we started tonight that, you know, during a crisis or a, you know, a bushfire evacuation, that's not when you're trying to get your 10,000 steps a day. That's not when you might be sitting down for your twice a day meditation.

So, Claudia. What can you tell us about having these habits that we know that are good for us most of the time in preparation? How helpful is that during a crisis just so that we are a little bit better able to manage?

Claudia: Yeah, I think Yvonne's already explained it quite well when it comes to exercise, you know, the same thing goes for how you cope with stress, for instance. If you're well aware of your own signs of, I'm getting really stressed out and, you know, starting to panic a little bit and what is it that helps me calm down? So, it could be breathing exercises or meditation. But I guess I touched on this a little bit before because this, this has come out of our research. A lot of people when they're faced with emergencies or crisis or, you know, something's happening and they think a couple of glasses of alcohol might help me in this situation, or, you know, they might pick up a bit more smoking and things like that. And we know that those things actually. are not going to help you think clearer, they're not going to help you sleep better, you know, they're not going to make you feel better the next day, they're not going to make you any sharper.

So, I guess it's really good to be aware of those sort of negative coping behaviors and to try and avoid them as best you can. So, I probably want to focus on that a bit more.

Jane: Thanks, Claudia. So last section is going to be from me. I'm an MS nurse and as I said, I'm a rookie firefighter. That's me there with my husband in our wildfire firefighting gear.

So, let's start with. what emergencies can be. I think it's really obvious to think about the big things like the fires and the floods and the earthquakes and tsunamis, but I want you to also think about the little things. Even, I mean, just recently we had a phone network outage and that had some very serious impacts, but also some very minor impacts to some people.

Think about how you would go in all of these things. Some of them may not relate to where you're living, but even the smaller stuff. How would you go without power? And no air con. How would you manage this? So really have a think about all of these little things. What would that do for your daily life? And specifically in terms of your individual symptoms and your needs. Because we know MS is different for everyone. And then separate to MS, your life is different to other people. Specifically, though, think about how your symptoms would impact your ability to pack your bag quickly and efficiently. Because we've listened to Eilish, we've got our plan, we've got a list. Now, how quickly would you be able to put that in place? If that is really stressful and difficult, do you have something packed ahead of time? Is it within your scope to go to Kmart or the op shop and wash some clothes and have them ready to go? And they're not stuff that you wear all the time. It's not your A grade jeans, but you've got clothes in a bag that you could grab that you don't have to pack, that's not worrying about if it's in the washing basket. If you're not sure, think about if I was to take you away for a week and we left in two hours, what would you grab?

Or on the flip side, if we said you can't leave home for two weeks, what do you need? Obviously, we've got the normal things we can think of, tea and coffee and maybe pet food, but what about things that might be specific to your health and your MS? Do you have mobility aids, assistive devices, equipment, consumables, catheters, we're talking wheelchairs, walking frames, personal alarm, and for God's sake don't forget the charges. The charges are imperative and it's often the thing that we forget. I did have to put a little Santa here because when I was writing this slide I was thinking you're going to want a list and your publisher should check it twice and then I thought well come on it's the Naughty and Nice so I do think you should check your list twice because we don't want to forget anything.

Medication is a big part of living well for not everybody, but a lot of people with MS. So have a list of what you take, how much and when and why you take it. You'd be surprised how many times I say to someone, so what do you take that medication for? And they go, something with the muscles, I'm not sure. And also who the prescribing doctor is and ask them ahead of time, what do I do if I can't access this medication? Your doctors can give you advice that might be like, look if you run out, you run out, start again when you can. It could be, oh, we want to make that last, so maybe instead of daily, take it every second day. Or maybe it's, look, call us and tell us you can't come for infusion and at that time we will discuss what we do. Or it could be, this medicine is really essential, you need to get stocks, you'll have to go to the hospital. Now, that might not be an MS drug, that could be insulin, but that just gives you an idea that for some medications, not a big deal, and for other ones, they're really serious. This is your red flashing warning to say that these are examples. Don't follow that advice just because you saw it on here. It's going to be different for different medications and different health conditions.

There's a number of questions that you can ask your health care and support team ahead of time. Some ideas of what I think you might like to ask for your neuro team is Can I miss a routine appointment in an emergency. It might be an emergency that you're experiencing in your area that doesn't affect the hospital or it could be a two for or it could be the opposite. I know during COVID some people will be able to attend their appointment but the staff in their MS clinic were furloughed to other areas, so they had to reschedule appointments.

And also, once you've developed your plan just give them a quick look at it to say are you happy with that? Are there any concerns that you have? In terms of your GP and your pharmacy, what happens if you can't get a repeat prescription for a regular medication? Is your GP happy to have an extra one ready for you? Does your pharmacy know you well? And would they let you owe one if you haven't done that before? And what if your pharmacy closes and your scripts are on file? Do they have a pharmacist that's just going to fax it to anyone? So, if you're in another state, they'll say, yep, you can get your blood pressure medication. No worries. I'll send that through.

And for some of you, you'll have people visiting you at home. You might have a nurse come once a month to change a catheter or do some wound care. You could have support workers coming or even allied health like physiotherapy. Are there conditions that would stop them from coming? Different organisations will have policies that say their staff don't do home visits over 35 degrees or their staff won't enter a region that has a higher fire danger risk, for example. So, know that ahead of time because If it's one weekly physio, we can think, all right, well, I'll follow Yvonne's table for exercise, I can do myself. Or if it's someone that's supposed to come every morning and help you get up out of bed, assist you with having a shower in your bowel regime, what happens if they can't come for three days? What does that look like? So again, asking this ahead of time is really helpful.

This is the Australian Fire Danger Rating System. It's new in Australia as of September last year and you'll see it when you're driving on the freeway, at the roundabout, it's also online and it's updated. Some of them are updated automatically or manually and it's a good idea that you familiarise yourself not only with what's the rating in my area, but also what does it mean? So, the white, we only kind of use it when there is a fire danger rating. So sometimes you'll see no rating, you don't have to do anything. Green means plan and prepare. If a fire happens in this, in these conditions, it's likely it can be controlled. When we go up to high, that's be ready to act. If a fire starts in this section, they can be dangerous. So, there's a heightened risk. You need to know ahead of time. What you will do if a fire starts in these conditions and the safest option is actually to avoid a bushfire risk area. Extreme is when we start to get really serious. That is when we say take action now to protect your life and property. So, if a fire starts on a day that's rated extreme, it's likely to spread quickly and be extremely dangerous. And the conditions on that day are very, very serious. So, you should check your plan that's already written and know that to take immediate action. And if your property is not already well prepared for the fire, you should go to a safer location before the fire starts. And reconsider travel through fire risk areas. So, maybe you're going away for Christmas, maybe where you live it's on a moderate, but where you're going could be extreme. And then finally, we have catastrophic. That's the worst rating it can be. For your survival, you should leave an area in catastrophic. If a fire starts and takes hold, lives are likely to be lost. These are the most dangerous conditions and your life can depend on the decisions you make in regards to a catastrophic fire day. So, you should stay safe by going to a safer location earlier in the morning or late at night, and homes cannot withstand fires in these conditions. Sadly, it's also important that you know that even on a day like this, you may actually not be able to leave, especially if there's a fire and help may not be able to get to you.

So, the safest thing to do is leave early and actually even consider leaving in the extreme time because as Eilish mentioned very early on, as much as we have good warning systems, you cannot rely on a text message, a door knock, a message on the radio, for example, to tell you what to do. Being familiar with these ratings and knowing what the colours mean and what you do is really important ahead of time.

Think about your local area. Do you live in the city? Do you live in the suburbs? Are you kind of regional or are you really remote? Because that will dictate actually what your fire services are. To the best of my knowledge in the metropolitan areas we have paid fire services. So, we have Fire Rescue Victoria, ACT Fire and Rescue and Fire Rescue New South Wales and they're in the metropolitan areas. Tasmania is a bit cute by itself. It's got the Tassie Fire Service in metro and regional and has a combo of paid and volunteers. But in the regional areas of the other states, we have the CFA, which is what I'm part of. It's purely volunteer firefighters, it's only what they have and ACT, Rural Fire Service and New South Wales Rural Fire Service.

So, you can reach out to them. You can ask them, hey, what advice do you have for me? Some of these services will gladly have volunteers come out to your property, have a look where you're living. Is there anything that they want you to know and vice versa? It might not be about MS, it could be access to your property, but you also might want to let them know things such as if you were to evacuate that perhaps you're a power wheelchair user and you're actually only able to evacuate in a vehicle that is set up for that and that you actually don't have one, it would need to be an accessible taxi, for example. We touched on the local evacuation centres and places of last resort.

These will be in your community somewhere and it's quite likely that you can visit them ahead of time. So, know what the facilities are. And then also know about the helpers in your community. Could be Vinnies, Red Cross, the Salvos, the Lions, Seek Volunteers Australia. I know Eilish touched on the fact that you'll know the people that make a big difference, but you should also know that there are lots of volunteers that get the warm and fuzzies from helping. And it's not a focus of our presentation tonight, but I want you to know that just because you have MS it doesn't mean you can't contribute to these organizations if you want to. You may not think that you're able to say be an operational firefighter, but there are non operational roles in some of the more hands on organizations. So, you could absolutely contribute, say, to the CFA by helping them be a secretary, or help them with their social media posting, or finances, or treasury. So, if you wanted to be a part of what makes these organisations great. You absolutely would be welcome.

What plans do you use? Well, I think the best one is just the one that you're going to have a go at. There's not one that's necessarily better than the other. We know the Ready Plan works well. There's also something called the PSEP, which is great for people living with a disability, and you can find that online. And there's also an Australian Disaster Resilience Knowledge Hub set up by the government. You can't see the little word there, but it's got something for each state, so you can see specifically what you want to know. You can use a pen and paper. You can use a voice to memo. You can use the note section on your iPhone. The point is that you start writing things down and having a true source of information.

How are you going to know what you need to know when you need to know it? That's another thing. So, there's good apps and websites for each of the states. I believe the NSW Hazards Near Me, actually covers bushfire and ACT as well. And of course, there's local TV and radio. Some of these apps are very happy to send you notifications if you allow them to. There's also the Bureau of Meteorology as well. So, these kinds of things can help let you know, Hey, there's a total fire ban. there's a cyclone or whatever's going on.

I'm going to ask then a question of our panel. Are there any common myths or misconceptions that people have about emergency preparedness?

I'll go to Eilish first. Eilish

Eilish: Sure, and I think it's something that you touched on just before, Jane is I think there's a myth that the, the early warning about evacuating, things like that, will actually come from the emergency services themselves. And unfortunately, we've seen in so many circumstances that the efforts go to the controlling of the fire or the operational yeah, the work that needs to go into protecting the wider community and people have been trapped at home because they've expected someone to come and support them.

What we do see is that it is the neighbours, it is people nearby who are the first responders in so many cases. But I think that the expectation that someone will tell you when it's time to evacuate as opposed to I guess, again, going through those things that you were talking about, Jane, looking through the risks and knowing what, what the danger ratings are to, to make that proactive action.

Jane: And I loved what Claudia said before about, you know, the changes to diet and the lifestyle changes that people make, not only during COVID, but also afterwards. I knew of someone that was fortunate enough to survive the King Lake bushfires, and she said, we survived but we just didn't have any food. She said all we had was potatoes for some reason in the cupboard and salsa and they could only cook on the barbecue and so that's what they ate for days and it just hadn't been something that had occurred to her. She was well equipped to prepare her property and so she fought the fire beautifully and was very grateful for that but hadn't considered, yeah I've got a really good generator but I actually don't have that much petrol and then at the time she was actually a cigarette smoker and she said it was a really rough a couple of days without cigarettes when you're used to that. So, she had to go through that withdrawal during that time.

So, Claudia, what do we know in terms of how people came out of COVID in terms of re-establishing? Because it's not just about surviving, but kind of getting back to living well.

Claudia: Yeah, it's a really good question, and it's one that we haven't yet analysed the data for. So, we are really keen to find out whether people were able to go back to some of the healthy habits, or whether they've kept. If they created new healthy habits, whether they've kept them when things went back to normal, so to say people went back to work, et cetera. So that's something that we're really interested in, and we'll be analyzing the data.

I just wanted to go back to one to your question before about what are potential myths, because I think one thing that we saw from the survey that we did about whether people think they need an emergency plan is that there was, you know, there was about 15 percent of people that said they didn't know whether they needed a plan or not. And we actually saw when we looked further into the data that most of those people were living in cities so metropolitan areas. And I guess if you are living in a city, you might think, well, a flood or a bushfire isn’t going to affect me. So maybe I don't need a plan. And unfortunately, we're seeing more and more that actually people in cities are also affected by emergencies.

So, heat waves are certainly happening in cities. Brisbane obviously had quite severe flooding. So, I guess. Even if you're living in a city, don't think that an emergency plan is not going to be helpful for you because it most likely will be.

Eilish: And I think building off of that, Claudia, is also I guess broadening the scope of what we see as an emergency. I think it's easy for us to think of fires, floods, and I guess we're starting to add heatwave into that as well. But thinking about anything that is going to disrupt your normal way of life, so whether that would be a health episode that means that you end up in hospital, whether that be losing a job or something like that, I think having an emergency plan doesn't need to be strictly related to natural hazards.

But thinking about things that would disrupt your daily life and thinking about what the, I guess, the repercussions of that may be. So, if something does happen, you do have that comprehensive plan and that, I guess, sort of broader thinking around ways that you can help yourself to bounce back quickly.

Jane: Thank you, Eilish. And last question for Yvonne. Yvonne, I think I remember way at the start of your bio before all of your wonderful accolades and achievements, it said you're a physio. Is that right?

Yvonne: Yes, I am a physiotherapist, yeah.

Jane: Thank you. So, for people that have a physio or might be interested, is it a reasonable thing for someone to go to their physio and say, hey, I was thinking about emergency preparedness at how I'd go if I had to get out and do the stuff and organize myself. Could you help me with some tips or help me increase my balance and my mobility or my energy? Is that something you could ask a physio to give you some advice on in terms of maybe an exercise plan that's going to support your ability to do that?

Yvonne: Yeah, I think as a physio we're actually we're quite lucky in that we do spend longer times with our patients than other healthcare professionals such as a GP. So, engaging them and ideas and suggestions about what to do in the longer term and what to do if your health changes. And Eilish picked up on a point there, what if you do have a change in your health an immediate potential relapse, for example, of symptoms or something else happens. You could chat ahead of time with your healthcare professionals to have something in place or at least consider something in place so that you are able to maintain your health.

And one other thing I just want to sort of talk about before we finish up this evening is, it's obviously quite late on over in the east coast and we don't want people to go to bed worrying about these things. Obviously, we've highlighted a lot of ideas about how you can better prepare yourself for emergencies that might happen and remember that thinking about these things is the first stage in making yourself more confident and being prepared. And even if you take home just three or four of the key messages that we have talked about tonight and can, and can act on them, whether it is talking to your GP about is telehealth available if I need it at some point in the future, or indeed chatting to your physio about what if I can't see you, what can I do instead? Or preparing those bags of emergency clothing so that it's ready to go at the drop of a hat. Those are good steps to make yourself feel as if you've done something to prepare for an emergency.

Jane: Thanks Yvonne and thank you for all our guest speakers for joining us tonight. So, before we finish off I just want to quickly show you that we have such a number of services at MS Plus that can help you live well with MS.

A number of them are also free, so don't hesitate to contact us if you'd like to learn about any of these. We have a wonderful resource hub that's organized by our amazing education team, and that's where you'll find webinars like this one, podcasts, articles, and also our newsletter as well. So, if you want to contact our organization, the best way to do that is through Plus Connect.

You can contact through our 1800 number or by email as well and they'll be very happy to give you any information you're after, book in a nurse appointment or whatever you need. So that's it from us tonight