Voiceover:

Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis. Join us for news and views on the latest research, treatments, and advocacy efforts, as well as candid and informative interviews with our community, those living with MS and their families and carers, together with leading clinicians, researchers, and advocates.

Tennille Luker:

Welcome to The Raw Nerve where we dive deep into the issues that matter to our community. I’m your host, Tennille Luker, and today we’re tackling a critical topic, emergency preparedness, specifically for those living with multiple sclerosis. Whether it’s preparing for heatwaves, bushfires, or any other emergencies, having a plan in place can make all the difference for people living with MS. With summer fast approaching, it’s more important than ever to talk about crisis planning. Thankfully, there are now new and updated resources to complement the Australian Red Cross RediPlan, which is a disaster preparedness guide. Known as a Crisis Toolkit, these new and updated resources were developed by researchers in collaboration with Australian Red Cross and MS community stakeholders to help people living with MS complete their crisis planning.

Today, I’m joined by an incredible panel of guests who have played key roles in this project. Joining me are Associate Professor Yvonne Learmonth, a dedicated researcher from Murdoch University and a physiotherapist. She has researched the impact of the 2019/2020 bushfires and pandemic on Australians living with MS to help develop the Crisis Toolkit, supported by MS Australia.

We are also joined by Eilish Maguire, who is the Program Lead for the Urban Climate Resilience Program at Australian Red Cross. She’ll share some insights on crisis planning. We’re also joined by Jane Gilliand, a nurse from MS Plus who took part in the pilot study of the Crisis Toolkit, and Jenni Vanyai who lives with MS and has completed the Australian Red Cross RediPlan using the Crisis Toolkit. Welcome, Yvonne, Eilish, Jane, and Jenni.

So let’s start with you, Eilish. Can you tell us what the Australian Red Cross RediPlan is and how it helps people prepare for emergencies?

Eilish Maguire:

Of course. The RediPlan is Australian Red Cross’s household emergency plan, and it helps you prepare for any type of emergency or crisis by focusing not just on survival, but recovery. It’s based off of Red Cross’s experiences working with community after a disaster, and the reflections that impacted individuals have had around things that they wish they had done, things they wish they had brought with them, and using that to create something that is a very strengths-based tool to enable people to consider their unique capacities and circumstances and have that included in their emergency plan. It looks at the physical aspects of preparedness, like packing a go-bag and things like that, but it also takes into account the mental preparedness and what that looks like.

Speaking from my own experience, I was a carer for my mum who had multiple sclerosis for many years. And I think when you’re a carer or you’re living with a condition like multiple sclerosis, you get very good at predicting the unpredictable or making plans for it. But I had never thought about what would happen in an emergency scenario with my mum. And so when our air conditioning broke during a heat wave one year, I hadn’t factored that into what we may have to do. I hadn’t made plans around that, and that was the most stressful thing of all. It wasn’t trying to figure out where to go, who we could call for support. It was the fact that I had never even thought about what could happen in a scenario like this. And so I was getting stressed and that stress reaction actually took away from my ability to respond effectively and to do what was required to ensure that my mum, my dad, and myself were all healthy.

And so that’s one really important element of the RediPlan and of the Crisis Toolkit that has been developed is thinking about all of these other scenarios that may happen and what your capacity to respond may be. So when an event does occur, you are better prepared.

Tennille Luker:

It sounds like an absolutely fantastic resource, and I guess it really helps you think about the unthinkable, really, to put a plan in place. And it’s really important to have that plan in place, particularly for people living with MS. I really appreciate you providing your personal story as well. Yvonne, I’d love to hear more about the Crisis Toolkit and the motivation behind it. Can you tell us a bit about the development process and why it’s so important for people living with MS?

Yvonne Learmonth:

Yeah, of course, Tennille. So I think that we started to notice the need for this Crisis Toolkit a number of years ago, and we’d been looking at data related to what was happening to people with MS when there had been a large scale flood in the Pilbara region of Western Australia. So then working with the wider team of researchers, which includes Associate Professor Claudia Marck at The University of Melbourne, Ingrid van der Mei, and Laura Laslett at Menzies Institute. Allan Kermode who’s a neurologist at Perron Institute, Therese Burke who’s a nurse currently at Notre Dame and some psychologists and other researchers, we felt that we should reach out to the MS population and ask them what their needs were at times of crisis. And we looked at available resources around the world and then we brought those resources to the table and discussed them with people with MS.

And they identified that the RediPlan was one that was preferred by the Australian MS community. The RediPlan itself, as Eilish has said, it’s an excellent resource that is very inclusive. It recognises that individuals are, they’re best positioned to understand their own circumstances and their own capacities, and this matched with what we were hearing from the MS community who we were talking with and also the nurses and the doctors who we’d asked about needs as well. So we collaborated throughout the whole project, and the project’s been going since the early part of 2020, so actually before the pandemic happened, but we realised across those four years about the number of and varied types of crisis that happened to Australians with MS and the need to be prepared. And then we started collaborating with the Red Cross over a year ago now in developing additional resources that would be relevant for people with MS and relevant for other people with chronic health conditions and disabilities to use to help them work through the RediPlan. And that’s when Jane came into the picture as well. And I’ll let others tell you more about the process too.

Tennille Luker:

Thanks so much, Yvonne. It’s really such a fantastic resource and it’s great to see such a collaborative effort as well across Australia. Now, I wanted to turn to you, Jane, who took part in the Crisis Toolkit study, pilot study. What benefits do you think people with MS will get from completing the RediPlan using the Crisis Toolkit?

Jane Gilliand:

I think people with MS are going to get great benefit from having something that helps them prepare for emergencies. As Eilish said, we know there is so much unknown in MS, that’s nearly the one thing we know for sure is that you don’t know what’s going to happen next. So the idea that there is now something that helps you plan for those unknown, can really help in reducing anxiety and does something that I love, which is make things a little bit less bad. We are never really going to make emergencies a wonderful time. You’re never going to get that alert on your phone and think, wonderful, I’ve prepared for this. I’m excited. I’ve been waiting, but it’s going to be a little bit less bad. This plan also allows you to really personalise your plan and think holistically because it covers all the basics of who are your utility providers, where’s your will, what do you need to take with you?

But it really thinks bigger picture about who’s your communication and support network, who do you need to speak with? How would you counter negative stress during this time? And it aims to actually boost your confidence and independence and increase your support network. So I think, in that aspect, it’s actually really well suited to people with MS because we know they thrive when they’re linked in with other people. So I think the best benefit will be peace of mind and awareness, and I think the best benefit will actually be from the preparing and thinking that is going to be afforded to people who spend the time and have a go.

Tennille Luker:

That’s really insightful. I know someone like me would really benefit from that because I like things to be really organised and I know it’s really difficult to be organised under circumstances like that, but it sounds fantastic. Yvonne, back to you. What feedback have you received from people living with MS who have used the Crisis Toolkit?

Yvonne Learmonth:

Yeah. Well, there’s really, really good feedback. I would say that everybody was positive that they had completed the toolkit and they’d taken the time to sit down and help them prepare for what might happen in the future. But again, this was part of a research study, so we looked at it from a wider lens as well, and we found that over half of the people that engaged and completed the RediPlan, they then had went back to it within three months and potentially ticked off some of the things that they hadn’t already prepared and they thought about what they would need for in the future. Perhaps, for example, are we ready to go back so that they could leave at any given moment in time or reached out to neighbours to connect with them better? So 71% of them had also told us that they had used those tailored resources for people with MS that we developed specifically for this research study.

And this links back with what Eilish was saying earlier on, and we added in the Crisis Toolkit additional information about helping people prepare for times of heat waves, helping people prepare for times of evacuation, or if they might need to isolate for a situation. And those were additions that I think we got really good feedback from and people found them useful.

Tennille Luker:

That’s fantastic. That’s really great to hear, it really shows the value of the tailored resources. So Jenni, I wanted to talk to kind of turn to you, as a person living with MS, can you share your diagnosis story?

Jenni Vanyai:

I was in my early 40s, married with three teenage kids and had that very active life of running around, working, and keeping up with the kids. Started with very subtle symptoms of slight left foot drop and reduced dexterity in the left hand. An MRI showed a large lesion on the right side of the brain that was affecting the left side. 25 years later, here I am, mid-60s, and my limp has worsened to the point where I can’t really move around without a cane, but move quite well with one. I’m weak on the left side, probably more like someone that’s had a stroke than MS in typical terms. But I do most things with one arm and one hand. My kids and my husband have all left home and I live on my own now, but I manage quite well with minimum help.

Tennille Luker:

Thank you so much for sharing that. It’s always really powerful to hear personal stories like that. I’m glad to hear you’re living quite well as well. Would you mind sharing your experience with completing the RediPlan, using the Crisis Toolkit, Jenni?

Jenni Vanyai:

When I first looked at it, I looked and there was a fair bit of detail, but I thought it was important to take control of being prepared in advance. Luckily, despite my reduced mobility, I don’t feel particularly vulnerable in case of emergency that would cause me to flee the house because I still drive and I’d be able to get myself out if it was needed. So obviously, everyone’s not in that situation, but for me personally, I’m okay with that.

Tennille Luker:

Great. Thank you so much for telling us about that. Now, I want to ask a question to all of you. Could you please elaborate on some specific actions included in the Crisis Toolkit that are particularly useful for those living with MS? I guess let’s start with you, Jenni, then Jane, then Yvonne, then Eilish, if you can remember that order.

Jenni Vanyai:

Looking at the RediPlan probably prompted me to actually do something about what I knew I should have been doing all along, it just brought it forward. I knew I needed to do it, but it just prompted me to go ahead and do it. I’m lucky enough that my daughter lives around the corner and she’s come to my rescue a couple of times. I had a fall just a few months ago and I actually knocked myself unconscious, hitting my head as I landed. So luckily, I came to and was able to call her to come and assist.

And it wasn’t so much the issue of that, but it did make me think, I’d already done the RediPlan and filled out all the details such as insurance, energy providers, all the detail that you might want and I’ve got it sitting at a second location and I can access, but it did make me think part of the plan probably should have been to organise a power of attorney because that situation could have ended quite differently and left me in a position where I couldn’t easily make decisions for myself. It prompted me to go ahead and organise a power of attorney.

So in that regard, it was a bit of a warning and a bit of a wake-up. Yeah, but I’ve done the whole plan and got it at a sec… Obviously, one of your problems might be that your house catches fire, so it’s not here at home. It’s sitting at my daughter’s house.

Tennille Luker:

Sounds like you’re being really proactive about this stuff. I mean, it’s very unfortunate that you had that fall, but at least it got you to think about the power of attorney side of things as well.

Jenni Vanyai:

Yeah, I feel quite prepared for most scenarios now.

Tennille Luker:

That’s great. That’s great to hear. Jane, how about you? What do you think will be particularly useful from the RediPlan?

Jane Gilliand:

The RediPlan does a really good job of asking people to reflect on their own wellbeing and any barriers that they might experience and asks you to reflect on a lot of things, like your ability to communicate, is that impacted by anything? Are you managing any health problems? And also, how you cope with stressful situations. But on top of that, it gets down to the nitty gritty of things like are you able to manage your daily routine without assistance or do you require the support of some medical equipment, or do you require the support of a caregiver or multiple caregivers? So it really gets down into those levels of questions and answers that we may not think about when we think, yes, I would need to go, or how would I live somewhere else? And it asks you about whether you are well supported, both those around you.

So I think the specific questions about your wellbeing is going to be really helpful because not only does it allow you to fill in notes about your circumstances, but there are little tips to prompt you. So if you sat down by yourself and didn’t have any help, you would actually do a pretty good job of getting through it because of the way that it’s written.

Tennille Luker:

It’s great to hear, Jane. Thank you for that. Yvonne, what do you think would particularly help people living with MS when it comes to the Crisis Toolkit?

Yvonne Learmonth:

Yeah, I think Jane’s done a really nice job of summarising the fact that it allows people to reflect and think about things that they would take for granted on a daily basis. And that is around areas such as maintaining contact with your healthcare team and maybe if you can’t maintain contact with them, who are the alternatives and individuals that you would go to. And it also encourages you to speak to your family about making a plan and potentially as well connecting to community groups and all of those things are going to improve your overall wellbeing. Whether or not a crisis event occurs or just we need to look after our health going forward, it helps you put into the forefront like healthy habits and having healthy habits before a crisis occurs can make you better prepared for them.

I think both Jenni and Jane have alluded to the time that you might need to take to sit down and complete the plan. And some of that can be anxiety inducing at the time, but everyone that we heard from who had completed the plan, they were really pleased that they had done it and they had thought about what their needs might be. And then the RediPlan touches base with more obvious things except, well obvious to me, like planning your medication and how you’re going to access medication if potentially the pharmacist isn’t available or you can’t get there. So it does really make us think about logistical things, but reflects on what our wider needs are.

Tennille Luker:

Thank you so much for sharing that, Yvonne. And Eilish, did you have anything else to add?

Eilish Maguire:

I think Jenni, Jane, and Yvonne have done a fantastic job of summarising a lot of the really key points around the RediPlan and the Crisis Toolkit that goes along with it. And I think Jenni touched on something really quickly around sharing the plan and making sure that the plan you create is shared with the people around you and making sure that other people know. So this is obviously relevant if you’re going to be evacuating, you want the people in your support network to know where you’re going. And I guess, prompting that conversation early of where to go, is that place accessible to you? Does everyone know that you’re going to be there so there’s no one concerned that you’ve gone somewhere else? But I think more than anything, especially when someone’s living with a condition like multiple sclerosis, I think completing the RediPlan can give you a sense of control over something that is often so uncontrollable and feeling as though you are going to be prepared and you do know what you have to do in a stressful situation. I think that is the biggest gift that comes out of the RediPlan.

Tennille Luker:

Thank you so much for providing that information, Eilish. I think you’re right that it gives people that sense of control. And even for people who don’t have any health conditions, I think, it’ll be incredibly helpful as well. Yeah, the Crisis Toolkit along with the RediPlan, for sure. Jenni, I wanted to turn back to you. I was going to ask you, what advice would you give to others living with MS who are hesitant to complete their own crisis plan.

Jenni Vanyai:

Let’s say, don’t underestimate how much peace of mind it might bring you to complete it and have it done. And I’d say, don’t look at the plan and think, oh, it’s overwhelming, there’s too much there to do, because you might be tempted to put it aside and do it another day. But I think the key is just start. And it doesn’t matter if you do it at a really basic level at first. If you look at it as a whole, it might look too much, but if you take it piece by piece, do the basics and then you can add to it as you like. And I found myself, I started to fill it out at a basic level, but once I was on a roll, I didn’t stop until it was done.

And some things are less necessary than others, but helpful, things like it’s useful to know if you had to evacuate, you might need to know your energy provider, who they are, what the account numbers are with all of those, so they’re easy to look up because most of us get our bills by email these days, and it’s just a matter of jumping on having a look at the account. You don’t have to go and rummage and find paperwork. So I’d suggest don’t feel that it’s too much. It really is not much at all. And once you get started, it’s quite easy.

Tennille Luker:

I think that’s really great advice, Jenni. It’s all about taking that first step to make it less overwhelming. And Yvonne, how can our listeners living with MS, or anyone in particular, access the Crisis Toolkit?

Yvonne Learmonth:

Yep. So the Crisis Toolkit and the RediPlan are free across everyone. So we would encourage people living with MS and their friends and family and neighbours to actually jump on to MS Australia’s website where you can get access to the Crisis Toolkit. It’s also got information there about the research that we’ve developed to get to the stage that we’re at now and testimonials and opinions from people that have completed the RediPlan and the Crisis Toolkit. And remember that it’s not only for people with MS, so we’ve designed the additional components to help people with other chronic health conditions or disabilities, but as everyone’s alluded to the RediPlan itself, it’s not specific and it can be used by anyone and everyone across Australia might at some point in time need to access things that they never thought they would need to.

Tennille Luker:

Great. Thank you so much, Yvonne, for providing that information. Eilish, in addition to the RediPlan, does the Australian Red Cross offer anything to the community to help prepare them for crises?

Eilish Maguire:

Yes. So Red Cross works with communities in multiple ways to support them to be better prepared for emergencies. So we have individual and household preparedness workshops called EmergencyRedi Workshops that we offer around the country to help people create their personalised emergency RediPlan. So that’s definitely something that’s available to everyone. At a community level, we also work in a lot of high hazard risk communities to support whole of communities to develop disaster resilience plans as well. But I think a lot of the resources that we have on our website are really looking at how people can support themselves and to start making these plans. So I’d really encourage everyone to look at the Red Cross website.

Tennille Luker:

Thank you so much, Eilish. It’s great to know there are so many resources available to help people plan for crises. Now, is there anything else any of you would like to add about the importance of creating a crisis plan and how the new Crisis Toolkit can not only help people living with MS, but others who may have a disability or chronic health condition?

Eilish Maguire:

The number one thing I would love to add is that the RediPlan and the Crisis Toolkit aren’t just relevant if you’re living in a rural area or in a high bushfire risk or flood area. Everyone needs an emergency plan. And as I said, it could be around heat waves, it could be around a pandemic. Any of these hazards would be better for you to be prepared early and to be thinking about before it comes. So just to sort of push past that sort of doubt around, you only needing to have an emergency plan if you’re living in an area that’s going to be affected by a bushfire.

Tennille Luker:

Thanks, Eilish. Jane, were you going to add to that?

Jane Gilliand:

Yes, I was going to say, I think one of the benefits of the plan as well is that it prompts people right at the start to say, are you informed and how will you stay informed? And I think that’s such an important part of it. Separate to my MS nursing, I’m also a volunteer firefighter in our Country Fire Authority in Victoria. And so as part of that role, I’m learning more about the ways that we assess and then communicate with the community. So for example, things like the Australian Fire Danger Rating System that tells you, for example, the fire risk and what’s likely to happen if there’s a fire that day. And that gives you information about when you are supposed to leave. And I think before I was part of being a firefighter, I just thought someone would knock on my door or I’d get a text message or a phone call and people would say, “This is going to happen. You need to do this.” And what I know now is, that might happen, but we can’t be sure that it will.

So the best thing that I think can come from this, if people take away nothing else, is how to be informed and stay informed. So whether you know that you’ve got the ABC Radio channel that you listen to or you download the relevant app for your state that notifies you when something’s going on, I think it’s so important to know when you are supposed to act. Because packing is one thing, but knowing what to do and when is really important. And it’s so empowering to be able to know that. And then the other thing is, you don’t really get many options in a rush. So if you are able to ask questions ahead of time, do you know whether the NDIS would fund crisis accommodation for you if that’s needed?

Do you know what happens if you have to not go to a neighborhood safe place, you need to evacuate to a whole other area? What would you do with Tysabri? Some of the MS medications have risks of rebound relapse if you miss a dose. So that’s not something you can call your neurologist and find out right now, but they will answer it if you give them time. So being able to find out the answer to your questions ahead of time is really important. So staying informed and then using the time you have between now and that emergency to get those questions answered so you have peace of mind.

Tennille Luker:

Thank you, Jane. They’re really important factors to consider. Great. So as we wrap up today’s episode, I want to extend a heartfelt thank you to all of our guests, Yvonne, Eilish, Jane, and Jenni for sharing your insights today. It’s been an enlightening discussion on the importance of preparedness for those living with MS and other health conditions and disability.

Thank you for joining us today on The Raw Nerve. We hope this conversation has provided both knowledge and encouragement for those living with MS and their loved ones. I also encourage you to see our show notes for more details and links on the Crisis Toolkit and additional resources. Until next time, take care and stay well.

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