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.
Phil O’Neil:
Hello, I’m Phil O’Neil. Welcome to the MS Australia Raw Nerve Podcast. And it’s a special podcast today as we talk about the NDIS and its role in helping people with MS.
And we have the Associate Professor Des Graham with us, President of MS Australia, and also Kelly Englehardt, who features in our advocacy campaign, and another advocate, Sonia Marcon as well. Thank you all for joining us.
Des, if I can start with you. Now, let’s talk about the NDIS. I basically want to ask you three questions. The what? The how? And the why? Firstly for the uninitiated, what is the NDIS?
Des Graham:
Well, I’ve got to explain the NDIS, like a Medicare for people with disability. So it’s a universal access for people who meet a certain criteria without having to be means tested to access services and support for their disability.
It’s funded through the Federal Government and of course the taxpayers foot the bill for that. And at the moment there’s around just under half a million people accessing those services. And those services are provided, again, once the individual reaches a level of criteria in regards to their disability. And once that’s determined, then a package of services are built around that individual and the funding for those services are actually given to the individual to then use to purchase their services as they wish.
Historically, the money used to go to an organisation and they used to be called Grant Funds and they’d go off to a charitable organisation, for example. And then the charity would reach out and provide services, blanket form to people with disability. The NDIS has actually turned that on its head. The money actually goes directly to the client and then the client can make a decision on where they purchase their services.
The strength of that is, A, it’s individualized care, and B, it sharpens the delivery arm for providers, because they’re now competing for that individual’s funding, if you like.
Phil O’Neil:
Which essentially you’ve answered a lot of the questions, my next how was. How do they benefit people with MS? Is there a specific area or a specific avenue that they’ve allocated for people with MS?
Des Graham:
Excellent question, Phil. And I’d like to be able to say yes, but one of the problems I think with the NDIS in relation to the 30 odd 1000 people with MS in Australia, is there is clearly a lack of content knowledge. That is, the people who are making the decisions in relation to the funding that people with MS may receive, simply don’t understand the disease.
And now there’s a broad statement, and I’m sure there are some people within the NDIS who do understand the disease. But generally speaking, the decisions that are getting made in regards to the funding that a person with MS will receive are being made by good meaning public servants, but they’re not clinicians.
And we know that there’s a problem when we fear that there is a significant amount of underfunding for some people. But then we hear also there’s a significant amount of money over the requirement of an individual. So when you get an assessment that underfunds or assessment that overfunds, you know that there’s actually a problem with the assessment itself.
And so, we’ve done some work around that. And really it is back on the NDIS to… And we’ve offered to support them in this regard. And we’ve already done a fair bit of work with the NDIS to try and help them, if you like, skill up, so that their decision-making can be more informed around our disease.
Phil O’Neil:
Okay. And I want to get to you about the how in just a moment, but I want to pick up on something you said that you believe that perhaps people who are within the NDIS don’t specifically understand what it is people with MS require.
And that’s what I’d like to bring in Kelly Englehardt. Kelly, who’s been a case study for MS Australia’s NDIS campaign. Thanks so much for joining us. What are your thoughts then about what Des was saying? Have you found that with the people that you’ve dealt with, the NDIS, that they understand your specific needs?
Kelly Englehardt:
Definitely not, Phil. To get on the NDIS the first time I was denied, I had to prove that I couldn’t be cured. So you can imagine how deflating that was to start with. That was the first setback for me. And now I’ve been on the NDIS probably five or six years roughly, I can’t remember exactly how long.
But now things I get I don’t need. Things I do need, I don’t get. I appreciate what I get. But then when I’m asking for other things, more exercise physiology for instance, because I am declining, that was knocked back, then I was thrown some money for social and community participation, which is fantastic, but I don’t need that. I’m still independent and can get out. So that funding could have been utilized more in terms of me having more exercise physiology. So the understanding to me isn’t quite there yet.
Phil O’Neil:
Okay. It’s interesting. And let’s also point out that this isn’t a pile-on onto the NDIS from us, essentially what we’re trying to do is to help them, to help us. I found that really interesting, Kelly, that you had to prove your situation with MS and that you can’t be cured. What kind of proof could you possibly show? Did it have to be in writing? Did you need something from your doctor, from your neurologist?
Kelly Englehardt:
I had a letter from my neurologist to begin with, and when I went back to him, his words were, “you have to be kidding me, they need proof?” And that really upset me, because I’d had MS for a while, but I’d started declining and it was having more of an impact on my life.
So then to go back and say to the neurologist, you need to write very bluntly how bad I am, how it can’t be cured, and how I needed help. So another letter. And then I did get approval, which was fantastic. But as I keep saying, the deflating feeling of having to say to someone, no, it can’t be cured.
Phil O’Neil:
All right.
Kelly Englehardt:
It’s not hard to realize MS is an incurable disease, unfortunately.
Phil O’Neil:
Okay. Well, we’ll talk about the specific wants of people within NDIS or with MS I should say. But Des, are you hearing a lot of stories like this?
Des Graham:
Yes. And I’ve got a similar story as Kelly, as a person living with MS. And I just want to pick up on a point first, Phil, you’re absolutely right, this is not a podcast that is intended to damn the NDIS, because the intent of the program itself is fantastic. And the fact that Minister Shorten is back at the helm, if you like, gives us some hope, given that he was the architect of the NDIS, that things will improve in the immediate future.
We’ve been waiting. That government’s been in place now 12 months or more, and we haven’t really seen much improvement. So the program itself is fantastic. It’s the mechanics of it that are failing people with disability and in particular those diseases that don’t have the high prevalence rates like MS.
And certainly, when I first got my package with the NDIS it was a relatively small package. And then when it came up for a review 12 months later, I seemed to have a good meeting with the then assessment officer, the liaison officer. But when the program came, it had a 30% cut in it and nothing had changed. And in fact, as we all know, MS is a degenerative chronic disease without a cure.
So unfortunately, today’s the best day we’re going to have because tomorrow MS is going to take a little bit more away from us. And next week it’ll be a bit more, et cetera. So when I got a 30% cut, I nearly fell off my chair. And part of the problem was that 40 years ago I broke a leg playing rugby league. And you disclose that as you’re supposed to, through the medical assessment.
And with much hoo-ha and a significant amount of pushing, including me going to the then acting CEO of the NDIS, I eventually got the assessment detail of, or the reasoning why they decided that they would cut my funding. And it was because I’d declared that 40 years ago I had broken my leg. They then made the determination, that as a result of breaking my leg 40 years ago, the pain associated with my MS was a health-related issue and not a disability or disease-related issue.
And so a bit like Kelly, I had to go back. And we are the experts, it’s our body that’s being affected. But I had to go back to the neurologist as well, and he had to explain that on first presentation, 89% of all people with MS have pain as their primary symptom. And so I then had to fight for the next six months to get that reimbursed.
Interestingly enough, I won the argument, but they didn’t put the money back in, because six months had passed and 30% equaled about three months. So they just said, we’ll pick it up next time around. So I’m suspecting that when it comes to my assessment in January next year, I’m going to have to do battle again for the very same reason.
And if I can just add, Phil, my background is nursing. I’ve done a number of postgraduate nurses programs, an educator. I then was a deputy DG of health and acted as director general in various states. I’m an Associate Professor associated with research in the MS Flagship at Menzies and I’m a person with MS.
So my 40 years of history as nursing, as a policymaker, as an architect for the NDIS where I was working, if I can’t navigate that system, then I really feel that those individuals that are out there that don’t have the level of experience I have, they’re going to struggle. Because if I can’t convince the NDIS, that actually my problems related to my MS, then I really am very concerned that other people aren’t going to get access.
Phil O’Neil:
Yes. And of course, something like this can’t be whittled down to a simple case of semantics either. It’s far more broad than that.
Sonia, I’d like to bring you in. As a 50th Anniversary President Medal recipient, now, you were diagnosed with MS when you were 21 years of age. You’ve been involved in a lot of things with MS Australia. You’ve voiced a few animations and also you’ve done some stuff with the media as well. When you’ve spoken to the media, when I think you did something with the ABC, did you feel your message was being understood?
Sonia Marcon:
Understood is a really, really difficult word to agree with. Okay, I’ll use an example. There was a thing that got shared… I do this all the time. There’s a thing that got shared on Facebook yesterday, and it’s a story that always gets shared. Oh my God, that whole thing where people who get glandular fever, they can develop MS later on in life.
That story just keeps getting rehashed over and over again. And every time it comes out, I just think to myself, oh, okay, all these people who don’t have MS, they can read that and go, oh, so that’s why, oh, they’re okay. There’s research going into it. We’ll just go about our day.
So I feel, yes, all the advocacy work and everything I do on the media, yes, it does get listened to. It gets listened to by people with MS I think, more closely than people who don’t have MS. People who don’t have MS they might listen to it and go, oh gosh, she’s doing so well for herself, I’ll clap, clap. Anyway, what’s for dinner?
Phil O’Neil:
Yeah. And the other thing that came up was Lyme disease as well. And the unfortunate thing about this disinformation is when you have MS and you start reading that Lyme disease or several other things are the cause of it, you start going down that rabbit hole as well.
But you’re right. I guess because there’s so few of us, but to us it’s the most important thing in our lives, people, I guess, tend not to take it as seriously as something which is a far more widespread and chronic disease. And that’s one of the problems, Sonia, I think we face as well.
Sonia Marcon:
I think it’s a huge problem. Also, the big problem is that we don’t die from MS, not anymore. We used to back when it was called creeping paralysis in the middle-ages, all this stuff you learn when you have MS.
But everything goes into, oh, well, it’s going to take their life. So we’ve got to look into that much closer. Okay, yes, that’s horrible. And I’m not saying at all for a second, that’s not awful, but my life in a big way did end when I got diagnosed, the same as everyone else who gets diagnosed. Because you have life plans and your life plans usually come to an end.
And I’ve had to work my butt off to try and get back some of those life plans that I had. I’m an actor on the stage. That’s something that I started at university and I’m still doing that right now. I’ve got a show coming up soon, but I had to work so hard to do that. I still get fired from jobs because of the MS.
Phil O’Neil
Wow.
Sonia Marcon:
Yeah.
Phil O’Neil:
Des, your thoughts.
Des Graham:
Look, Sonia raises a fantastic point there. And it goes to the heart of the National Disability Insurance Scheme. It is an insurance scheme. And because people with MS who receive good care in Australia’s wonderful healthcare system, universal access, but because we don’t die we need to limit the amount of disability associated with the illness.
And that comes through things like, as Kelly was saying, access to physiotherapist and exercise physiology, occupational therapists, speech therapists, et cetera. So that the chronicity of the disease doesn’t become increasingly burdensome, A for the individual, B for their carers, and C for the society. Because the greater the disability, the greater the impact on the family unit and the greater level of funding that we’re going to require to be supported.
The other great point that Sonia makes is around her experience. And when she was diagnosed at 21, if you think about individuals that at early 20s or in their 20s generally, are still trying to find their place in the workforce, may have a child or two on the way, probably got a mortgage on a house, probably got married, probably still paying the car off.
So there’s enormous amount of monetary concerns. But then there’s our life goals and the dependencies that they might have, whether it’s a partner or children or elderly parents. And at that age, when you get diagnosed with MS all that gets shattered. It sounds like a sad story, but in a way it’s life challenges. And it all happens at once. Unlike some other diseases where you get diagnosed with appendicitis, with all due respect to people who have had appendicitis, you can go and get that cut out. You take three weeks off work and you never stop being a parent or a son or a daughter. And life goes on.
But with a chronic disease like MS, unfortunately, it doesn’t stop. And one of the key arguments that I put forward with my NDIS package was, my wife was now showering me, she was assisting me to change, essentially my nappies because of my incontinence. And she had gone from being my wife to my carer. And all the time that we used to spend having a coffee on the Waterfront was now being consumed by adding an additional layer of burden to Linda, my wife, and an additional layer of guilt that I was feeling, because as I say, she was now my carer. And through the love that we have, she wasn’t going to let me sit in a dirty nappy. So she would get in there and help out.
So I think that’s really important too, that we recognise the impact that it has more broadly. But Sonia’s point is incredibly well-made.
Phil O’Neil:
And we’ll come back to you in a moment, Sonia, because I want to talk to you about the frustration that I can see, it’s building up within you because of the place that we’re at.
But I’d like to go back to Kelly for a moment. Kelly, because you’ve had to go through all of the hurdles and hoops that you’ve had to jump through in order just to get heard, let’s move forward and try and find out how we can make things better for us.
In your opinion, what would you like to see for anybody that approaches the NDIS and not having to present letters of proof that you’re not well, what would you like to see immediately for people like yourself with the NDIS in ways that they can help you?
Kelly Englehardt:
Understanding, people are going to the NDIS for a variety of diseases, illnesses, disabilities, whatever you want to call them. And as MS Australia’s hoping to get a neurological advisory board on, so it’s not just MS. But when I go to someone and speak to them and then my details get put forward, they go, “Oh, MS, we get what this is. We get what could happen.” Everybody with MS is different. A 100%, we all have different varying degrees. And within those different types of MS there’s varying degrees. Everyone will be different.
But to go, MS is long-term, MS most likely will affect them. Most likely in the future they will need a little bit more help. From what I got at the beginning to what I got now is hugely different. I need it now more than I needed it 21 years ago. Now is the time, as Des was saying, my husband has to help me a lot more. I need them to understand that we are a person, that we want to live our life the best way we can and to understand what we need and when we need it.
Phil O’Neil:
Yeah. And I guess it’s important for them to understand as well that we’re not coming to them cap in hand looking for sympathy. We’re looking for empathy, but also we’re not coming as bludgers. None of us want to be in the situation we’re in. None of us want to go to anybody and ask for any help.
And I was saying before, Sonia, I can see that you are very zealous about this and that you, for all intents and purposes, appear to want shout from the rooftops. I feel that there’s a lot that you feel needs to be done here.
Sonia Marcon:
I’m not on the NDIS. And the big reason for that is because I did go and speak to two different people, and all they wanted me to do was what they wanted me to do. I went to them saying, this is what I’m after. And all I got back was, “Okay, you’ll need a motorized wheelchair.” I don’t need a motorised wheelchair. “Well, you need a shower chair.” No, no, I don’t. Can I tell you what I need?
And I did. I listed a whole bunch of things. The thing is, the things that I need are things that other people might see as wants. But the thing is, those wants of mine will make my life much happier. And that is a huge thing for our life and our lifestyle.
And the other big thing, the reason that I haven’t gone on the NDIS is because I am working so hard to get my life in order, to get my life together. There was a time when I couldn’t walk, I couldn’t talk, I couldn’t even leave my bedroom. But I went through medication changes, physiotherapy, so much of it for so many years, and I don’t want to deal with the stress of the NDIS. And they look at me and they’re, “Oh no, you’re okay. You’re walking fine. You seem okay.”
But the thing is, I still don’t get into things because I have MS. And listening to Kelly’s and Des’s experiences, just reinstate to me that people don’t understand. And there are just all these walls you keep coming up against. And it is so frustrating and it’s so stressful. The things I would like from the NDIS… And I said this to one of the two people I spoke to, I said, well, I’d like some funding to go and do some professional acting courses. “Oh no, we don’t do that.”
Okay. At the time I was unemployed, I’d like some help with employment. “Oh no, we don’t do that.”
Phil O’Neil:
Yeah. Again, I guess it’s up to you to go in and define what parameters you want, like you said, needs as opposed to wants. And this brings us back to the reform that we’re looking for. The reform with the NDIS, Des, the main one, again, it appears as you say, that people that work within the NDIS that are working with people with MS don’t understand what our needs are. And that seems to be primarily the first objective.
Des Graham:
Absolutely. And right off the cuff. I would make this call back out to the NDIS, MS Australia, along with its staff, its volunteers, its board members, its member organisations, all stand very willingly to provide assistance.
And we’ve got great people like Sonia and Kelly and Rohan who are prepared to work alongside the NDIS to improve it. What does the NDIS need to do? A, first thing it needs to do is it needs to listen. And I think the stories that we’ve all shared today are all typical stories. There’s nothing, these aren’t extreme ends. These are very typical stories that we hear. One of the things that MS Australia has been calling for, is the establishment of a neurological committee, if you like.
We understand that with 30,000 people with MS in Australia and a multitude of disability and diseases that the NDIS is looking after and caring for, they can’t have a committee for every client. But if they establish a neurological committee, that’s 1.6 million Australians that have some form of neurological and neuromuscular disease. 1.6 million.
So we’re saying, put a neurological committee together, we will support you. You’ll get advice on how to provide better care and better assessments for 1.6 million people. And through that process we will provide you with the information and the expertise that you require, so that Sonia can live a better life.
Phil O’Neil:
So essentially it’s an umbrella scenario you’re coming to them with, which is a great idea. Because as you said, it encompasses so many other things, not just MS but people that have other neurological problems, for example, Parkinson’s disease, who would benefit from this.
Des Graham:
Rohan is the CEO of MS Australia, but he’s also the Chair of the National Neurological Alliance. Sixteen disease groups make up the neurological alliance. And if I was in the NDIS, if I was still a senior bureaucrat and I was hearing all the concerns that were coming from the community, I’d be reaching out to Rohan, and saying, “Rohan, Jesus, come in and have a chat with me and tell me how to fix this thing.”
Phil O’Neil:
Because we can do the work that they don’t understand, because of the experience that is within MS Australia.
Des Graham:
Yes, absolutely. And the great people that are willing to tell their stories, again, without embarrassing Kelly and Sonia, but they’ve been great advocates and they have a willingness to share that information.
Phil O’Neil:
So Kelly, if I was to say to you… So I’ll act the part of the NDIS, with an understanding that you have needs, what is it that you need right now? What would make your life easier immediately?
Kelly Englehardt:
The tick of approval for my car modifications. I’m waiting on that. They approved the funding for all the lessons. So currently I can’t drive. So my husband, again, he’s working full-time, he’s managing our two children. And more Allied Health Services. Those two things in this very moment in time are the two big things I need.
Phil O’Neil:
So they’re all smaller parts of a bigger picture really. But you’ve got to put the smaller parts together first. What about you, Sonia? If you were given the opportunity to say, this is exactly what I need right now, what would it be?
Sonia Marcon:
Yeah, Allied Health Services is a very big thing. But I’m in a very specific situation, because my partner, he also has MS. He got diagnosed with MS about five years ago. And one of the big things that does get in the way for me doing all the things that I do, is travel.
I don’t have my license anymore because I had a seizure 13 years ago. And also I don’t feel that confident driving anymore. I’m sure I could try do it, but I would like more ways to have access. And right now I’m catching public transport. That’s fine, if I can. But the thing is, I’m also relying on my partner to drive me around. And with his MS, he’s not always feeling up to it. He has to work full-time because I definitely can’t work full-time. He is finding it very, very difficult working full-time, but we don’t have a choice because we don’t own a house, we rent.
Because when I was diagnosed, I wasn’t in the housing regime. So I’ve only ever been a renter. If someone is asking me, what do you need right now, is that there are so many things that could make my life easier. There are so many things that I feel that I have just had to accept and take care of myself, because I’ve got no other choice but to do it.
Phil O’Neil:
You want to be heard. Everybody just wants to be heard mostly, more importantly than anything else, I guess.
Sonia Marcon:
Absolutely, yeah. But access to the community, that is a huge one for me. And I just got a new job, that I had to get myself. Because I did ask the NDIS, do you help with people, employment? “No. Oh no, no, we don’t do that.”
So every job that I’ve had, I’ve had to get myself. My new job, which I love, I’m an actor in this job, I’m training nurses for Holmesglen, TAFE and counselors and things like that. When it’s at Bourke Street, that’s fine. I can get there, no problem. Some of the jobs are out in Moorabbin. I live in Pascoe Vale. That’s a long journey on public transport. That’s fine, I can do it. But the thing is, it is long, and I’ve had to say no to some jobs because they’ve been too early in the morning. And because of the MS I can’t wake up that early.
Phil O’Neil:
Yeah, it seems to me, Des, that what we really need is the government to be more receptive to the people that know exactly what they need, which is us. It’s funny, when I go to the doctor now, I’ve got a great doctor and I constantly read about changes with MS medication and with the research that they find.
And he doesn’t know a lot of this, because being a doctor, he’s got a lot to learn. He’s got a lot of stuff on his plate and he’s very receptive to anything that I come to him with. If I say, look, I’ve just read this. He always goes, well, that’s really interesting.
And that’s I think the situation that we are in with the NDIS, is that we need them to realise that we have specific experience and education in the areas like MS and neurological diseases. And I think therein lies the rub. That’s where I think the very first step for the two to work together, is an understanding that each side needs each other and that each side has a specific set of skills that they can use within the abilities that they have.
Des Graham:
Yeah, 100%. And if the NDIS is to meet its intention as an insurance scheme, it absolutely needs to listen to its clients, because we are the ones that can say, if you give us A, B and C, it’ll reduce the chronicity of the disease and the disability associated with that chronicity and in turn, reduce the amount of money that everybody seems to be concerned about, that’s going into the NDIS. And as we’ve all said now, a number of times, for God’s sake, just call us, we’ll help you.
Phil O’Neil:
That’s amazing, isn’t it? It is, we’re here, what more do you want? We’re offering you free help. Okay.
Des Graham:
Exactly. And MS Australia is working really hard. We’ve got a great relationship with the Neurological Alliance I spoke about. We support, MS Australia actually provides a secretariat for the Australian Neurological Association. So we provide that support.
Again, we’ve got access to those resources. We’ve also worked and have a campaign for MS Nurses at the moment. So the MS Nurses in Australia, we have an incredibly close relationship. And we’re working with the Australian Professional Health Registration Authority, AHPRA, to actually identify MS as a particular accredited course. So we’re working with them.
So we may not be the organisation that says, here is all the answers, but we’re pretty good at introducing people, the right people to the right people. So, again, just a call-out to the NDIS, the Minister’s Office, anybody that is prepared to come and have a conversation with us, we’ll be happy to open the doors and introduce you to the people that you need to speak with.
Phil O’Neil:
For me, if somebody who’s just been diagnosed with MS was to come to me and ask me for some advice, which I wish I’d had, I guess, six years, seven years down the track, who could have offered advice to me now, it would be, you can get through this. You’re scared at the moment. You have no idea what the future has in store. But what you’re going to find is you’ll surprise yourself with the incredible amount of strength and resilience that you didn’t know you had and that it’s not going to be anywhere near as bleak or as petrifying as all of the thoughts in your head have imagined.
So understand that things will evolve at their own pace, make some changes to your life so that you can accommodate things that may happen to you. And the important word here is may, because they also may not happen to you. But for me, the important thing is to stay positive. And I would say that to people who have just been diagnosed with MS, but also people who are ongoing and have issues with MS, is to fill yourself with as much positivity as you can. It’s great to rely on people like the NDIS. It’s great to rely on MS Australia, but the buck stops and starts with you.
Sonia Marcon:
Yeah.
Phil O’Neil:
And that would be my message to people.
Sonia Marcon:
Thank you for saying that. Something that I wish someone had said to me when I was first in hospital, instead of giving me this pamphlet, that all it said was… A photo of a smiling woman going, so you have MS. And then you open it, it’s got lists that lists and lists of symptoms and then medication. Well, the two medications that are around. But I wish someone had told me that MS is not as scary as you think. You’ve got this.
Phil O’Neil:
That’s right. Yeah, that’s right. Because I was in the same situation as I’m sure you were Des and you as well, Kelly, when your head was spinning and you were handed colourful pamphlets and you looked at them and thought, how? For me, I’m a disc jockey. I can tell you what Jimmy Barnes’s new song is, but I had no idea about medication or anything.
And I think that it’s really important, and this is where the NDIS comes into it as well, people who have an understanding and an empathy of your situation, but can speak to you from a human level as well and from a human perspective, and try and give you some kind of guidance in the direction that you really need to go in, especially in these early days of the diagnosis. Des, your thoughts?
Des Graham:
Absolutely, Phil. And you mentioned a point that I think is really important, even with my background. Well, when I got diagnosed it was completely… It was unexpected for me. I actually thought I had a brain tumor with the medical knowledge that I had. Yes, I thought I had a brain tumor. Yeah, crazy.
Phil O’Neil:
I’m sure we’ve all gone, oh, thank goodness, because I thought it was a brain tumor.
Des Graham:
Yeah. So the thing for me when I first got diagnosed, so even with all that background it still scared the buggery out of me. I still didn’t know… All the content knowledge you think you have, you lose.
And I think the one thing that I would say, and I think we’ve repeated this, find somebody that actually understands the disease, who can actually tell you in a fashion, the way that you can understand it. And be prepared to ask for some help, because the impact on your mental health is profound.
And I think as resilient as you may be, once you understand the course of the disease, the impact that it’s likely to have, particularly again, if we go back and you’re a young person and all of a sudden your life’s shattered, you need to actually talk to people who can guide you through the disease, but also provide you mental health support. And I think that’s bitterly missing in our chronic disease world.
Phil O’Neil:
And Kelly, if I can ask you about this, with mental health support, with the NDIS as well, did you feel that you got any of that?
Kelly Englehardt:
This year was the first year that I’ve been able to gain psychology funding and I have needed it. I finally got it, thankfully. Thank you. It’s taken a while. And I’ve needed it. I have my times. Each time I’ve gone down a little bit and needed a change and had to give up my teaching career. That was huge mentally, because that’s what I’d wanted to do since I was a child, and I was diagnosed midway through uni.
And as you said, I thought my life was ending, I thought, how will I finish uni? How will anyone ever want to marry me? And how will I ever have children? Well, I ticked off all three, I can happily say. But the mental health is still a big thing because we don’t know what tomorrow’s going to be like.
So the psychology was huge. And I have a great psychologist that just gets me, and I can talk to her and just go, you know what? It’s really rough this change that MS has done, and I worry about how it’s affecting my husband and my children. And you really just need to talk to people, and it needs to be available to everyone, I feel. So I am grateful that I finally got it. But again, it’s taken a long time because every time they’ve said, “No, we don’t fund that”.
Phil O’Neil:
And you’ve shown so much strength through adversity as well. And I really applaud you with that, Kelly. I think it’s also really important, something that you said there too, is that you’ve got to be surrounded by people that understand you, but also you’ve got to be surrounded by people that can give you a positive message. Because I don’t want to hear from somebody in the medical profession or from somebody in a government department or from one of my friends that, oh, woe is you. Things aren’t looking good.
I don’t need that in my life. That’s got no part of my future whatsoever. And I think if you get surrounded by people like that, again, from government departments through to neurologists, whatever, take those people, take that toxic atmosphere out of your life, because that’s so important, isn’t it?
Kelly Englehardt:
Definitely. And I love that my husband, sometimes he just holds me while I cry. And it’s a bad day, and he doesn’t try and change things. He gets that I’m struggling. And other people who don’t have it, haven’t lived it, don’t understand it fully. Oh, okay. You’re feeling that. Oh, okay, you poor thing.
I was out in the wheelchair the other day and we were going along and I said to my husband, I just got a pity smile. I just got one. And he could see it. And not in a nasty way, because people look at me and go, “Oh, she’s… Ah, poor thing.” And I don’t want that. Yes, it’s crappy that I’m in a wheelchair at times, but now I’ve turned, thank you to my psychologist, my mindset, and gone, this is how I can get out.
And it all takes time to flip the mindset. It really does. And I can say that today and things next week can be worse or something and I could be completely the opposite. But you just need to have people who listen, the psychologists and people around you who love you and can just… Like my husband, just give me a cuddle and go, you need to cry. Just have a cry.
Phil O’Neil:
Oh, bless you, Kelly.
Sonia Marcon:
MS can really show you how strong you are.
Phil O’Neil:
That’s right. Yeah, that’s exactly right. Kelly, I want to thank you so much for your strength, as I said. And for going through what you’ve had to go through in order for us to learn from your experiences, so that we can go forward. So thank you so much for that.
Kelly Englehardt:
Thank you.
Phil O’Neil:
Sonia, I want to thank you for your ferociousness because I can tell that you are not going to give up, no matter what is thrown in front of you. And you’re going to keep fighting the good fight for the rest of us as well.
And so thank you so much for that too, and for everything that you’ve done.
Sonia Marcon:
Thank you.
Phil O’Neil:
And Des, of course. Well, you’re the man at the helm, so if it doesn’t work out, we’re going to come looking and blaming you.
Des Graham:
Yeah, that’s right. As long as it’s not a sinking ship, right?
Phil O’Neil:
But thank you, Des. I know it’s very important. You’ve got a lot here to deal with, but you’ve helped us, as well, unpack a lot of the issues through MS Australia and through a platform like The Raw Nerve Podcast. So thank you very much for allowing us to have a voice as well, on behalf of the organisation, with you at the helm.
Des Graham:
No. And thank you, Phil. Bringing you into our stable has been fantastic, and your contribution along with Sonia’s and Kelly’s and a range of others, is incredible. And it goes to the heart of I think, the MS community, where people are incredible when it comes to supporting each other. So thank you, Phil, and we’re really pleased that you’ve come along on the journey.
Phil O’Neil:
Thank you so much. If you need to know about Cold Chisel and the new single from Jimmy Barnes, I’m here for you anytime.
Des Graham:
Good on you.
Phil O’Neil:
That’s part of my contribution. Thanks everybody. Thanks for listening to us with our special NDIS edition of the MS Australia Raw Nerve Podcast.
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.
