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.
Rohan Greenland:
I’m Rohan Greenland. I’m the CEO at MS Australia, and I’m the co-host of The Raw Nerve. Welcome to our podcast, and today we’re joined by three very exceptional people. We have Mike Sarah who joins us from, he’s the creative director, I should say, at Couch Creative, a really excellent firm in Canberra who produce some superb videos and communications tools, particularly focusing in the public health area. In addition to that, we have Andrew Potter. Andrew Potter is a person who works with MS Australia, is a person who’s living with MS, and he’s really a lived experience advisor to much of our workings on a day-to-day basis. And in addition to that, I’m very pleased to have, Therese Burke AM who also is one of our key members of our research team. She’s a really extraordinary MS nurse, a former president of MS nurses Australasia, and has been heavily involved in the development of this new video that MS Australia has launched this year. It was a 50th anniversary project and we’re really, really pleased that we are discussing today how this video came to be and why we think it’s a really important contribution to helping the broader community understand what is MS.
So without further video, I think we’ll talk a little bit about how we came to produce this video, and in particular that we noticed last year that there were two superb videos, one produced by the American MS Society, and that video is very high-tech, very impressive, but made for an American audience. And then we also noticed that the British have a superb video also focusing on what is MS. Again, a different approach taken there, but also a really fantastic piece of work, really effective piece of work, but again, made for the British audience. So Andrew Potter, can you tell us what we did to look at… And how we compared those videos and how we came up with an idea for a uniquely Australian communications tool to help explain, what is MS?
Andrew Potter:
Good morning, Rohan. Yes. I’m more than happy to share our journey in relation to the development of the video, and agree wholeheartedly with you in relation to the two videos that we witnessed. The one from the States and the one from the UK. We thought it was appropriate given the ever-increasing number of folk with MS in Australia that we developed a video that was particularly targeted toward our community and our culture, and made reference to some of the idiosyncratic symptoms that we all experience living with MS. But it needed to be something that was uniquely targeted to our Australian audience. And we think we’ve done quite a good job with that draft.
Rohan Greenland:
And the American one in particular had a lot of high tick and animations that were incredibly impressive. I think one of the things we wanted to do is to perhaps tone down all the wiz bangs, but we didn’t abandon them all together. How challenging was that to bring across and basically still have that almost a graphic demonstration of what MS is, but without losing that human contact content and that sort of communication from a personal point of view?
Andrew Potter:
I think we needed to ensure that the video demonstrated what it’s really like when you first commence your journey living with MS, post your diagnosis. And as an introduction to the MS sphere or the MS world, I think it was a great opportunity for us to be able to share subtly some of the issues that we face living with MS. And after much consultation and discussion with Mike and Therese, and also the folk that were in the video, I think we achieved that quite well. Given this is the first round, if you like, of here it is, here’s somebody living with MS, and we’ve demonstrated some of the challenges that people are faced with each and every day. And I’m very happy with the outcome of the video demonstrating just that, it doesn’t go into the weeds of, if you like, of everything in relation to what MS is for people. But it’s a great introduction of, these are some of the things that we all experience when you’re first diagnosed. And I think it’s a great way of having an introduction to what is MS.
Rohan Greenland:
And in particular, there’s quite a good focus on the invisible symptoms. Was that one of the pieces of feedback we had from the people living with MS that we consulted?
Andrew Potter:
Absolutely. One of the things that most of us in the nation living with MS lament about most of the time is the challenge of the invisibility of our symptoms, we present usually, I would like to think we present relatively well most of the time. A lot of our symptoms are very subtle and hidden, and we are good at hiding them too, I suppose by virtue of our own culture. But I think we demonstrated that the subtlety of some of the things that we are challenged by each and every day. We highlighted those in the video, be it some of the sensation loss, or the cognition challenges, or memory, or balance. Yeah, I think we were on the money in relation to a subtle demonstration of this is what MS is like for us.
Rohan Greenland:
And of course, developing a short video to explain what is a complex disease is quite a challenge. But there were three big challenges we faced. One was exactly that, how to explain a complex disease in a short video, in simple ways that are easy to understand. Also, using a largely visual medium to explain often invisible symptoms was a further challenge. And the creative challenge of balancing and melding 3D modeling and live action to ensure the videos both medically and scientifically credible, but doesn’t lose its humanity. So Andrew, tell me a bit more about those three challenges just from someone living with MS, when you talk to people one to one, you probably take quite a long time to really explain the disease. As an advisor to this project, how challenging was that to package it into a three or four minute video?
Andrew Potter:
It’s interesting you asked that question, Rohan, in that given the nature of MS and the variables within, for each of us that are living with this interesting condition, a lot of our symptoms are very subtle and we don’t necessarily demonstrate them in an overt fashion. So we needed to absolutely ensure that we had a range of different symptoms that are generic, if you like, to us in the MS cohort, that we demonstrated those in an effective and a subtle way because those are some of the challenges obviously that we focused on, and live with, and deal with each and every day. The hidden nature of them, the invisibility, the subtlety of them. And one of the challenges that we all face is that most of the time we don’t necessarily demonstrate our symptoms and they’re quietly hidden behind the shroud, if you like, of everyday life that we all live. So it was quite confronting in a way to ensure that we demonstrated this in a respectful, and a subtle, but an accurate fashion. And I was very keen to ensure that whatever was demonstrated was actually appropriate and correct to ensure that what we were portraying is a true picture of what it’s like for people living with MS.
Rohan Greenland:
And I’ll go to Mike now. So on the technical side, how did you achieve this?
Mike Sarah:
With any project that we work on, Rohan, we sort of always start from the perspective of needing to get a really clear understanding of what the issue at hand is, and how it does impact people with the various types of symptoms or what it is in this case, obviously MS. So we did quite extensive research trying to find the variety and I guess that was really quite a surprising thing for us with none of our team having MS, that we realized how broad and wide-reaching the symptoms of MS were. So we sort of made, I guess a bit of a list and looked at what sort of symptoms, obviously we couldn’t show all of them, but what sort of symptoms could be portrayed effectively using a visual medium without needing too much discussion or complex information around it to make that an obvious thing.
So we came up with a short list and then we worked out how we were going to approach the interaction between the live action model, a live action actress, and the 3D model to get the best result in showing that the visual impact on the live action and then jumping across to show that physically what was happening inside. So we used… The technology we sort of decided to use was a motion capture suit. So effectively we got our actress to run through the entire series of scenes and then where we had the 3D model requirement, we would go back and re-shoot that scene with our actress in a motion capture suit, which is basically a big tight onesie with little dots all over it that enabled the computer to track all of the movements of the actor. And then that enabled us to map our skeleton onto the actress’s body. So it basically, it becomes a real version or a real live version of a 3D model running through the exactly that same process. So it’s really quite an exciting process. It’s starting to really become very popular but also it can be quite difficult to get right. And so obviously having a team who’s highly experienced and experts in that sort of technology really made it a lot easier for us to achieve the effect that we wanted.
Rohan Greenland:
And the settings, we used a couple of settings, do you want to talk about those?
Mike Sarah:
Yeah, sure.
Rohan Greenland:
And then I might go to Therese talk to us about the symptoms themselves.
Mike Sarah:
Sure. Well as I mentioned before, going through, looking at a number of the different symptoms, we sort of worked out which ones were going to be able to be visually translated and then we put them in different settings that would be common or applicable to individuals in say their daily life, in their normal routines to try and show a bit of a variety of when and how these symptoms may occur. So we chose a setting initially of a cafe scene. So we had a couple of friends meeting up, just a nice social environment, no stress, quite a casual sort of catch up. And then we also showed our actress in sort of a home office situation if you like. So just sitting by herself in a room at a computer. And then our last scenario was probably a bit more of a high stress situation, presenting in a boardroom. So we chose different locations but also different scenarios that would really help us to be able to paint the picture that this MS can impact people at any time and in any place.
Rohan Greenland:
And Therese talk about some of those symptoms, which ones are we really highlighting here in the video?
Therese Burke:
I think as we’ve talked about before, the invisible symptoms are just so hard to help other people understand. And sometimes finding the words for that is almost impossible. So for us to have a mechanism to be able to put some of those symptoms out there so that they can be understood, it’s just gold, especially when you can’t find those words. So the things that the symptoms that give people the most trouble are symptoms like fatigue, the cognition and cog fog that we talk about that I think the way that it’s been explained, I haven’t seen that before, Rohan. And it’s sort of just that visual just gave the words it told the story and that just is so helpful to be able to explain that to other people, because obviously we can’t see inside someone’s body to be able to know what’s going on. And this gives us our first really good look in a way that people with MS explain it in their own words. That feeling of cement and trying to push through and that tiredness that just, well tiredness doesn’t even cover it, it’s just this bone crushing fatigue. So to have that opportunity has just been so insightful.
Rohan Greenland:
And I think one of the useful purposes for this video is to help employers understand some of the challenges faced by people living with MS, and certainly in ensuring that the people can thrive in the workplace. But having an understanding of the challenges faced by people with MS in the workplace is pretty important to my way of thinking. What do you think Andrew?
Andrew Potter:
Absolutely, Rohan. One of the biggest challenges of living with MS is, as I’ve mentioned, the invisibility of the range of symptoms that we may well experience to then translate that into a workplace, and to be accepted and respected at work, and be supported to achieve whatever you’re setting out to achieve in whatever your chosen vocation may be can be really challenging. And whether it’s fatigue, whether it’s sensation loss, whether it’s cog fog as Therese has mentioned, or whether it’s just that sometimes you’ve got absolutely substantial challenges after a great night’s sleep and you wake up and you are absolutely fatigued like you can’t believe. That can be a real challenge if you say to your employer, I’m really fatigued, people’s interpretation of being fatigued is that you’re tired.
And I think hopefully this video demonstrates quite sufficiently that the symptoms are very challenging, they’re very hidden and we really need to have a great conversation with our employer wherever you may be employed and working to ensure that there is an appropriate explanation and definition and you’re in receipt then ideally of the appropriate levels of support, be it equipment that you may need to assist you or it might be an air conditioning unit if heat is an issue for you. It might be that you work part-time or you work from home. It might be that you need some assistive equipment to ensure that you can contribute adequately and professionally in whatever your role may be. But it doesn’t take a lot usually. And there are a range of different things that can be implemented for you no matter what you’re doing. It’s a challenge for everybody individually, but there’s usually a quite good way around solving and resolving the challenge that MS presents for us at work.
Rohan Greenland:
And Therese, we know that prevalence through the data that MS Australia’s released in the past few weeks, that prevalence of MS, is on a sharp rise in Australia and elsewhere in the world. In fact, we’ve really demonstrated that there’s been quite an alarming 30% increase in the incidence of MS in Australia over the past four or five years with the prevalence now at 33,000 plus rising from a 2017 figure of 25,600. So this is video is actually very timely and very important, but just thinking it’s probably also going to be useful for families’, friends, and relations of people living with MS as well.
Therese Burke:
Yeah, Rohan, I think that’s the beauty of all of this because when people are nearly diagnosed, it’s just so much information, it’s so complex, so much information to take in all about what MS is and also what MS is not, that’s also just as important. But then there’s information about symptoms, relapses, medications, potential new treatments and other therapies and it can just get really overwhelming. So to have a resource that you can go to use to help others in your life understand just, it’s just gold because then you’ve also got the potential to see it all together. And when we’ve got rising prevalence, that means more than just the rising numbers of people with MS, that’s rising numbers of people who care about people with MS, people who employ them, work with them, friends, all of these other people. So to have a resource that everybody can see and get the same information is just going to make it so much easier.
And also, I mentioned nearly diagnosed particularly, but Rohan, I don’t want to leave out people that have been diagnosed for some, time because I know from patients that I did see over a long period of time, depending on what sort of information they were given in the beginning or where they were pointed to, sometimes people 5 and 10 and more years into the journey still don’t really understand what MS is. So I think there might be a lot of people who’ve been diagnosed for some time who will see this video and just think, thank goodness this gives me the words to be able to understand myself and to explain it to others. So it’s for people at all stages of the journey.
Rohan Greenland:
No, thanks very much for that. It’s always a big challenge to portray complex illnesses and conditions in the very short space of time. But that’s why it’s so important. And the challenge we didn’t shy away from and of course everyone’s experience of MS is different. And so I think the way we can at least highlight some of those critical symptoms, and issues, and challenges is a big challenge, but one that we and other MS organizations around the world shouldn’t shy away from. Therese I think this has been a really great exercise and we’ll probably update it and build on it in future years and we’ll see this as an iterative process. But just thinking about technology too, Therese and the way we communicate, how important is it that we engage with alternative forms of communication for people living with MS?
Therese Burke:
Oh, it’s so important, Rohan, because it’s not just for people and in the way they like to receive information so that they understand and then can take the appropriate action that they need to. But also there’s symptoms that happen with relapse or with diagnosis of MS that also make it hard for communication. And that might be after an episode of optic neuritis, for example, where vision is affected, or sometimes hearing may be affected, or speech. So to be able to do things using more than one medium and using technology to be able to explore that is so important so that we can reach as many people as possible, and so that they feel that they’re understood as well.
Rohan Greenland:
No, that’s great. And Andrew, as someone living with MS. Your input into this was fantastic and also the other people living with MS who we consulted, what was their key message? What did they want to see out of this video when we first talked to them before we actually put the video together?
Andrew Potter:
It was very straightforward, really. It needed to be absolutely an accurate demonstration of what MS is really like, which is very challenging given for all of us, it touches us in very different ways. I’m in different day. It can be different for us. Our symptoms are different, some are more overt or we demonstrate them. Some are more hidden as I’ve mentioned. But the key message that we really wanted to achieve was that this is a demonstration video of some of the subtleties of the symptoms that we may experience. Not everyone necessarily may experience all that was demonstrated in the video, but that’s the nature of MS. Some days you bear witness to your symptoms, other days they may not be there. And I’m a good living example of that in that some days I’m functioning quite well, other days I’m fatigued. Some days I may wake up with cog fog and have it for the day. Other days don’t have it at all. So the challenges were variable, but the biggest message I got from the community was we just need to make absolutely sure that whatever we are we demonstrating is an accurate and true message of what some of the things that MS may well do to you as someone living with MS.
Rohan Greenland:
And what’s been the feedback?
Andrew Potter:
Feedback’s been good in that it is an accurate picture, which is great that it is. Also, the comments have come back too that this is, but the beginning of a series, no doubt of messages and demonstrations that can go to community because it doesn’t necessarily dive deeply into some of the symptoms that we may experience. But it was an introduction to be quite honest, that these are some of the symptoms that we may experience and there are lots of resources available throughout the country, including our own, in relation to if you’re looking for more information about MS and the symptoms, go find them, they’re there.
Rohan Greenland:
And in many ways, the video’s a pointer so that people can find it quickly, easily and help steer them towards more detailed information. Therese now add the reaction from the clinical community.
Therese Burke:
Thank you. I was hoping you would get to me Rohan. It’s been incredible. And I think because this resource can go hand in hand with a lot of the education that happens in the clinic while seeing the neurologist or the nurse and other therapists and they can look at it together and talk about certain things, stop it, have a discussion, keep moving on. So it’s just such a great resource that can be used in so many different ways. But the feedback I’ve had from a lot of the MS nurses that I’ve been speaking to is that this is one of the first videos or resources that touches on more than just the symptoms. There’s something that happens at the end, which is actually quite powerful and I’ve seen this video so many times that I have the same reaction even though I know it’s coming.
That hug at the end is such a demonstration of things that sometimes go unsaid and we don’t talk about. And that’s the importance of relationships, the importance of letting go sometimes for people with MS so that others can share with them the journey. I think sometime there’s a tendency to not want to bother others or that they may not understand. So I think that video showed also in that hug an extreme amount of hope, and positivity and that we’ve got this or I’ve got this mentality, we just can’t bottle that and give it to people and it’s something we can’t teach. So to have that in that last few seconds just blew me away. And I know that that’s had a huge impact through the clinical field because then that opens up that discussion too and the importance of letting others in, of sharing your experiences and talking about things. So that was gold.
Rohan Greenland:
Yes, in fact, I’ve had many comments along those lines as well. And I think that’s part of the very human importance of the approach that’s taken. But as you say, it’s those social connections and the engagement, and that last scene of the hug is, as you say, gold. Finally, to Mike, thank you so much Mike for the work Couch Creative did. We were very impressed with the pitch you made to us. And can you tell us just to finish off a bit more about Couch Creative and the work you do, particularly in the public health space?
Mike Sarah:
Sure. I guess we’ve, as a company, we’ve been around for, well since 2001, so we’ve worked for a lot of different clients across a lot of different sectors. And I guess over the years we’ve started to hone down on things that I guess we find we are able to help people more. So we’ve sort of moved away from just me too type projects into things where we feel like we’re actually making a difference or are helping our clients to make a difference. And the health sector is an area where there are so many of these sorts of issues that we believe we’re able to use our expertise to provide really good solutions to help people gain a better understanding. One recent example would be for Palliative Care Australia we’ve developed a campaign for them to help in a similar way to the MS project, to provide a public awareness campaign to help people gain a better understanding of what palliative care is because it’s similar to MS, it’s something that people know about or they’ve heard the term, but they don’t necessarily have a really good understanding of what it is.
So in a similar way, we went through pretty much exactly the same process of getting a really good core understanding of what the project was about and what we needed to deliver. And I guess then it’s a matter of rolling it out across the variety of mediums that you need to, to reach the most number of people within a budget. Obviously every project has a budget that you need to stick to. So then it’s a matter of using our knowledge in the market to say, “Well, this is probably going to give us the best result within a demographic that we may be trying to reach or using a various channels, say whether it’s TV, or online video, or social media.” So I guess that’s the long and short of it is we really love working on projects where we feel like we can make a difference and help people in the end.
Rohan Greenland:
No, we’re very grateful for that and we believe we’ve taken on a big challenge, part of our 50th anniversary activities, and it’s a challenge that we will continue to run with. Just because it’s hard, it doesn’t mean you shouldn’t take it on and do it and we think we’ve off to a good start and look forward to producing more and more useful, accurate, and meaningful information. So to all our guests today, thank you very much to Mike, to Therese, and especially to Andrew. Thank you. This has been the Raw Nerve.
Voiceover:
Thanks for listening to the Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
