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.
Jeremy Henderson:
Hello! Welcome to The Raw Nerve. I’m Jeremy Henderson, one of the hosts of The Raw Nerve podcast. Today it is my great pleasure to be sitting down in conversation with the president of MS Australia, associate Professor Des Graham. Now, hopefully not my last chat with you, Des, but our last podcast with you in your official capacity as president and chair. So you’re stepping down from that role at the AGM on the 28th of November. I wonder if I can welcome you first and ask you, how are you feeling a little over one week out?
Des Graham:
Thank you for the opportunity to make some closing remarks, if you like, as I exit the side door. It’s been an interesting couple of months since I announced my resignation. It’s sort of like dark clouds and rainbows. Dark clouds because it’s not really by my own choice that I leave this privileged position, but also rainbows in that I’ve got two new children, grandchildren. I’ve got some things that have been on my to-do list for some time that I want to get to. But there is a great sense of privilege, I think, that I’ve hold dearly. I think we’ve done some good things over the last three years, and I’ve met some incredible humans on the journey. So, it’s mixed feelings. And no doubt by the 28th of November, when I give that parting speech, it’ll be fairly raw, yeah.
Jeremy Henderson:
You used the word privilege. I wonder if I can just follow up. What has it meant to you to serve MS Australia to guide the strategic direction of this organization, and to advocate for and represent the interest of over 33,000 Australians living with MS?
Des Graham:
Yeah. So, I had a wonderful paid career, if you like, as a key bureaucrat, or a senior bureaucrat. But I never fitted the mould, if you like. I was never a career bureaucrat. I was actually a clinician who understood good governance. And I think that’s what I’ve brought to MS Australia. I think when we did the inaugural, or the initial reforms when we amalgamated MS Research Australia into MS Australia, it was based on a single goal, which was, how do we effectively meet the needs of 33,000 people with MS? How do we improve the quality of services they receive? How do we create a greater awareness of the MS community, and what MS is? And how do we invest more dollars into research so we can find a cure?
And I think those questions are exactly the same ones that I asked myself as a key bureaucrat. And I think the privilege has come by the fact that people have genuinely, I feel, trusted me to provide stewardship, to get us closer. We’re not there, but I think we’re better now than where we were three years ago. And so that gives me a great sense of satisfaction that has only come because of the privilege that people have entrusted me with.
Jeremy Henderson:
Thanks, Des. I wonder if we can go back a little bit further to get a sense of your career journey and your career path. I think you alluded to this, this is in some respects your second retirement. Back in August 2013, your MS forced your hand and you left, you retired from that senior role in the Department of Health in Tasmania. I wonder if I can ask you firstly, how has living with MS shaped your professional journey and your approach to leadership?
Des Graham:
Yeah. I think essentially I’m a boy from the bush. So, when I left school in grade nine or third form, I did a carpentry apprenticeship. And it wasn’t until I met my wife, my partner at that time, she’ll kill me for this because I should know, but I think it’s about 38 years married. So, we’ve been together a long time. And it wasn’t until I met Linda that I become inspired to be something else, something better. And certainly, exchanging shearing sheep for looking after patients in hospitals as a nurse was a significant shift. But for some reason, nursing lit a fire in me. And I think from day one, whether it was working with the RFDS, whether it was running the mental health programs in South Australia, whether it was running the area health services in South Coast, New South Wales, or as a director of indigenous community mental health and drugs here in the ACT, they all propelled me under a single agenda. How do we improve the health and welfare outcomes for people in the community?
And I think when I was diagnosed with MS, I think it was around 2008, 2009, I continued to work, but it became obvious, as it has in my second career, that I wasn’t able to meet the high standards that I set myself. But one of the things I’ve learnt since I’ve been diagnosed with MS, is what it’s like to be a recipient of services when you are somebody with a chronic disease. And that does shift the view you have of the frameworks that you’ve been implementing, the decisions that you have been making, and the impact that you have on individuals when you’re not walking in their shoes. And I think I’ve learned a lot in regard to what a journey feels like when you have got a chronic disease. And it’s different.
Jeremy Henderson:
You’ve got this unique background, this unique combination I think. Your background in health, your lived experience, that makes you absolutely qualified for your role and your involvement with MS Australia. Were you aware at the time when you embarked, I think back in 2013 when you took up that director role at MS Tasmania, were you aware at the time that you had this opportunity to leverage this really unique set of qualifications and background?
Des Graham:
When I was approached by MS Tasmania in 2013, it was pretty much parallel with the role-out of the National Disability Insurance Scheme. And I think they understood that they might have been in a bit of trouble. And so I just retired as the Deputy Secretary of the Department. And they reached out to me, because I used to fund them as the Deputy Secretary. And so through that process, I got to know them, they got to know me a little. I think they’re very smart in reaching out to a deputy secretary within the department and say, “How are we going to fit in this new world of the National Disability Insurance Scheme?” Unfortunately, they didn’t. They did not fit. And the National Disability Insurance Scheme has made it very clear to the sector that it is now a fee-for-service program. No more block funding. You’ve got to be good at what you deliver, and you’ve got to do it efficiently, and has to be effective.
And so in a way, that introduction into the MS community by MS Tasmania as it was then, was never meant to be a role as a Director of MS Tasmania, as the Chair of MS Tasmania, as a Director of MS Plus, as a Director on the University of Tasmania, MS Flagship, as a Director of MS Australia, and then eventually the Chair of MS Australia Board. So that continuum that has lasted some 10 years, was never planned. It was just opportunistic. I rolled from one position into another. And unlike many other opportunities, it’s not one that I sought, it was one that the opportunities present.
My little family, when I say my little family, my wife Linda, my son Desmond, and my daughter Anna-Lee, we have a family saying, in fact, when children have tattooed on them much to their mother’s disgust, and it says, “Doors and corridors.” And so life is full of doors and corridors. And some corridors are long, and some are short; some are painful, some are full happiness. And so I think that catchphrase is exactly what happened to me in this second career. It was just doors and corridors. One door opened that led me to MS Tasmania, then another opened, took me to MS Plus, then another to MS Australia. And fortunately, I think, I had a skill set that married up with what those organisations needed at that time. At another time, they probably would not have.
One of the failings I have is I find it very hard to sit idle. And so if there’s not a great deal of turmoil, and change, and momentum, then I’m not your guy. can’t sit idle. So fortunately, that 10 year span of working within the MS community, it needs, not necessarily people like me, but it does need people, good stewards, who come with a lot of energy, because we still don’t have a cure. And until that time, we’ve got to keep pushing forward.
Jeremy Henderson:
I wonder if, just to return back to your early career days and your start in nursing, there’s no more noble of profession perhaps than the nursing. And I think you spoke about that earlier in terms of doing something that had real meaning and value. What are your strongest memories from that time and the lessons you took from working in that space that shaped who you are today?
Des Graham:
I think one of the things that nursing does is it grounds you as a human. You see life and death along a continuum. And you see a point of entry into healthcare and a point of exit. Most of the time it’s a point of exit that is full of happiness and well-being. But on occasions, it’s an exit to death. And I think taking the learnings from nursing has made me a better human. I mean, I think I understand the needs and the wants of the community as they appeal to better health services and better welfare programs, if you like.
And I think the other thing that nursing taught me was, nurses are task-orientated. It’s a step after step after step after step. And you don’t do step number three until you’ve done step number two. And so I think that was also a key learning for me.
And whether nurses recognize it, and I talk to nurses today, and I fear they don’t understand it, but they do it anyway. They are a patient’s, or a community member’s, or a carer’s, best advocate. And whether that’s in a hospital setting, or a community setting, a mental health setting, a drug and alcohol setting, an indigenous program, wherever it may be, a nurse is their best advocate. They challenge doctors in terms of the clinical diagnosis, they challenge pharmacists in terms of the right medications. They invest heavily into making sure that Allied Health Service programs are aligned to the needs of the patient.
And they also represent the patient and carers in terms of advocating for better policies. And I think there has been no better example of that than under the National Disability Insurance Scheme. And I think the way that the nurses provide services now across that whole health and welfare continuum provides them with a unique opportunity to influence health and welfare programs to get better outcomes for people. And so yeah, it’s a long answer to three critical points. An introduction to the health and welfare continuum, an introduction to life and death, be task-orientated, but always be aware of the role that you are performing. And I think those three things are three critical points that nursing taught me, and I’ve used them all my life.
Jeremy Henderson:
Thank you, Des. I wonder if I could bring you back to day one of your involvement with MS Australia and MS Limited over a decade ago. At the time, did you have an understanding of both the enormity of the challenges and the enormous opportunities ahead of you? And what were those challenges?
Des Graham:
Well, the first one was obviously MS Tasmania. And I’ve overseen them, did partially, but then I’ve overseen a comprehensive due diligence, which resulted in MS Tasmania. You’re going to wither on the vine here. And my advice to them wasn’t about save yourself, it was, how are you going to provide services to 1300 Tasmanians with MS? Tasmania has the largest per capita population of people with MS in the world. And so my point to them was, you have to do the best thing to ensure that they deliver a service, so that those individuals get a service. And that was therefore rolled it into MS Limited at the time, now, MS Plus. When that task was undertaken, I really thought it was extra time. But then I was approached by the chair of MS Pus, “Would you come onto the board again? You have a set of skills that might be useful to us.”
And that introduction to MS Limited at the time actually gave me a great understanding of a specialised MS service provider providing a range of services that was faced with a turbulent future, in that it no longer received block funding, it was now subject to fee for service under the National Disability Insurance Scheme. It had 62% of the total population of people with MS in Australia, and had a whole range of challenges to face to it. And selfishly, I asked myself, “Do you really want to get involved in this? Because you’ve just essentially resigned from a career.” And knowing my own personality was I couldn’t sit by and just dangle my feet in the water. I’d have to create a current. I decided to do it.
And I think that then introduced me to MS Australia as I was nominated from MS Plus, the MS Australia Board. And that introduced me to a whole new challenge set. And I think at the time the MS Research Australia as a single entity, as MS Australia as the parent entity, it was clear to me that we weren’t serving the 33,000 people with MS in Australia as efficiently or as effectively as we should be. And so, as a result of some changes in governance, I end up being chair. And again, these things were sequential, but they were never planned.
But it’s been a good ride, and I hope that, again, others will judge me after the next week when I’m no longer have any influence. Others will judge me whether I’ve done a good job or not, but I’d like to think we’ve made some significant changes that provides an infrastructure for the new leadership team to continue the momentum to push forward.
Jeremy Henderson:
The merger of MS Research Australia and MS Australia, clearly I imagine one of your proudest accomplishments. What other achievements are you most proud of, and what legacy do you wish to leave behind?
Des Graham:
The merger of MS Australia and MS Research Australia was a critical piece of the puzzle to get right. And it was good meaning people on two separate entities believing that they alone and in isolation could do the best for the MS community. The reality was we were paying for two infrastructures. We were actually in competition with each other, and there was role confusion, and a whole heap of other things. But underpinning that was always the staff and the boards of those entities believing completely that they were doing the right thing. And so for that, I give them full credit. But bringing those two entities together, while difficult, it actually provided a much better base to meet the goal of a world without MS.
And again, I won’t go through the details of the things that we’ve done over the last three years that demonstrates the success of that merger. But it was a critical transformational change within the MS community, for the MS community. I mean, MS Australia is the leadership of the MS community, and it needs to be. And is seen as such, and so it needed to demonstrate its capacity to do so.
I think the legacy, and again, as I mentioned, others will judge me after I leave the post next week, but I’d like to think that the legacy is that we build a collaboration, that we’ve built better relationships and partnerships between MS state organizations, MS service providers with MS Australia, with the broader MS community, with politicians, that the red block now is brighter than ever before. And that’s because of the collaborations that we’ve been able to generate particularly over the last three years.
The other key collaborations are the offshore ones. In the last three years, we have progressed our relationship with the US, Canada, UK, Italy, to a point where we now have ongoing commitments to work in a fashion that was never there previously. And MS is at a global disease, it’s not isolated to any one border. So, to work effectively to address the global disease, we need those international collaborations. And so I think the legacy will be hopefully that people will say, “If he did nothing else, at least he introduced people to each other.”
Jeremy Henderson:
George Pampacos is stepping in as the new Chair of MS Australia. I wonder, have you passed on any particular advice to George?
Des Graham:
George is a tremendous human. He’s a great soul. And for that very reason, he has provided me with a source of confidence that in his role for the last three years as deputy chair, he provided good guidance, advice. Some I take, some I don’t. But George is, as I say, he’s a wonderful human. And I think with those qualities, that’s what you need when you’re working in an environment that is full of people with a disease who actually need someone to turn to say, “Can you give us a hand?” And you don’t have to shake hands with 33,000 Australians. You know what their needs are through the various policies, the reports, the information that’s in the social media, etc. And so I think George needs to continue to be a good human.
I think the rest of the role as chair, and he will make it his own, but I think it’s to maintain the momentum. We have created a great deal of energy and inertia that he just needs to continue to make sure. And certainly, I’d be remiss not to mention all the board, and I think the changes we made between MS Research Australia and MS Australia, and the introduction of independent board members that sit alongside the state representatives, I think has placed MS Australia in such a fantastic position that George, in a leadership role, along with that board, have the opportunity to continue to deliver wonderful things.
And again, I’d be remiss if I don’t mention the CEO Rohan Greenland, who was MS Australia’s inaugural CEO of the merged organization. And Rohan has built a great team, including yourself, along with other executives and staff. And I think everybody’s on the same page. And so George is fortunate in a way that a lot of the legwork in terms of the transformational change that was required has been done. And so he’s got a strategic plan in front of him that’s sound, it’s evidence-biased, and so George has got the railroad, if you like, of what he needs to do. And he has my utmost confidence that he will do it, because he’s a good human.
Jeremy Henderson:
Just one further future-facing question, crystal balltime, how do you see the future of MS research and treatment? What do you hope for in the next few years?
Des Graham:
I mean, we all hope for a cure. There’s no doubt about that. And sometimes cures come as a result of, and I’m talking any disease, just like life. You wake up one morning and there it is, you go, “Didn’t expect that, but I’ll take it.” So there’s every opportunity that a cure just might just present itself, because the breadth and depth of research that’s being undertaken in MS internationally, it’s encouraging, but it’s also on the boundaries of MS research. I mean, I’ve met researchers in the cancer field, that just by pure accident found a gene that actually related back to MS and said to the MS researchers, “Have a look at this. This will be of interest to you.”
So it’s not only the researchers with MS that I think give us hope that a cure will be found. In reality, do I think we’re going to wake up one morning and go, “There it is”? No, unfortunately not. But I think two things. One is, people who are diagnosed now with MS will not have the burden of disease that people my age, and in particular, those who came before me have had. I mean, people older than me with MS had a terrible disease burden. Mine’s bad enough, but I’m fortunate that I’m on a modern drug called Tysabri along with other oral medications that keep me relatively healthy.
People who are diagnosed today will have a much higher quality of life, but they will still have an incurable disease, and a disease burden that is specific to them. And so for that very reason, we have to continue to pursue the cure. And I think, not over the next 10 years, but beyond that, I expect that we’ll have a cure. And that is a sense of hope that I think is based on a wish, but also the evidence of the research that has come particularly in the last 10 years, and how far we’ve come. And if we can replicate that over the next 10 years, then we’re going to be close.
Jeremy Henderson:
Thank you, Des. Just a couple of maybe more personal questions for you. Can I ask you, what do you think you’ll miss most about your role?
Des Graham:
Clearly the contact with the broad range of MS community. And right through from visiting some of the disability sector facilities where young people with MS unfortunately find a home right, through to talking to the politicians in Canberra about improving the National Disability Insurance Scheme, improving funding for research. So, along that continuum, which is, again, I’ll reference back to my nursing days, that point of entry to the point of exit, all those people that fill that continuum, I’ll miss dramatically. They fill my life full of hope and purpose. And I think it’s been such a privilege to have been, not only to be the Chair of MS Australia, but to be welcomed within the MS community, and be allowed to represent people with MS and their carers. And I’ll miss that tremendously.
Jeremy Henderson:
Des, at the start of the conversation, you mentioned that you were stepping away from this role to spend more time with your family and to focus on your health. I wonder if you can talk to me about how you plan to focus on your health and your wellbeing moving forward? And also, what activities or hobbies are you looking forward to pursuing? I think you’ve also indicated that you don’t do anything by halves and you don’t stand still. So, what does retirement look like?
Des Graham:
Yeah. So unfortunately, 2024 has been a bugger of a year. I’ve had two significant relapses. Some of my lesions have not calmed down, and my burden of disease has increased by some 30%. And I have left side weakness, I have speech impediment, I get fatigued a lot easier now. So, I’m hoping that, as you say, focusing more on me, both in terms of both my physical and my mental health, is where I’ll start 2025. And think of 2024 in terms of my health as closing the door on that, opening another. I was going to mention a name, but I won’t, because that would be free publicity, but I’ve already arranged some assessments with physios and exercise physiologists in January. I’ve committed to my wife that I will eat better. She eats very well, me less so. But change my diet.
And I think we all address and maintain our own mental health in very different ways. And I spent a long time in the mental health sector. And I believe in the power of good mental health that allows you to live a much happier and more fuller life. And so I’ve got some things that I do inside my own head. I mean, I love music, I play music. And that takes me to really nice places. So I do that. But I also really enjoy, which is going to date me, but I really enjoy metal detecting. And so I have a full metal detecting kit, and I’ve got a four-wheel drive. And when I’m able to, a mate and I, we offer two or three nights, we find old sites, not only in Tasmania, which are lots, I mean, the Chinese mines up in the Northeast and the gold over on the West Coast, but also our exhibitions into Victoria, Ballarat, Bendigo, et cetera. So I’m hoping to do more of that, because there’s nothing better than digging a great, big dirty hole, and then coming up with something unbelievable.
Jeremy Henderson:
What’s the most surprising or interesting thing you’ve found?
Des Graham:
I found a set of convict leg irons in Northeast Tasmania, which I donated to the Derby Museum. And that was incredible. I actually still had the key, which was rusted, unfortunately, but it actually had the key to the leg iron in the lock, if you like. And then the second-best one was again in Tasmania. I dug another great dirty big hole, and I bought up a leather pouch. And it was tied together with a boot lace. I wanted to see what was inside. When I opened the leather pouch, the leather pouch fell apart, but it had 12 Chinese coins in them. And one of the coins was 900 years old. So, if you think about Chinese miners in Northeast Tasmania, you’re talking sort of early 1900, 1910. I think around 1910. So that coin was like 800 years old before it actually came to Australia. And some poor bugger stuck it in a pouch with 11 other coins and then lost them. And 130 years later, I dug it up.
Jeremy Henderson:
There’s just a couple of closing questions for you. Firstly, what would Des in 2024 have told his younger self, given the opportunity, what wisdom would you impart?
Des Graham:
I would’ve probably said, “Look after yourself better.” Yeah, I probably haven’t been kind to myself enough since I’ve retired, notwithstanding of, actually, people who have known me for a long time, will know that since I’ve retired I’ve lost 45 kilos. In that regard, I’m a lot healthier. But I’m not as healthy as I could have been. And I will, moving forward, take much better care of myself. Because I think if I can look after myself, then that eases the burden on my wife, for my children. It gives me more opportunity to spend time with my grandchildren, et cetera. So yeah, on reflection, if I could go back a few years, more exercise, eat better, look after my mental health.
Jeremy Henderson:
One final question from you, Des. As you step down, what message would you like to share with the MS community, including those living with MS, their families, and their broadest support network? What would you like to say?
Des Graham:
It’s been a delight, it’s been a privilege, and I absolutely thank the community for their partnerships and their willingness to be frank, but also engaged in moving us closer to a world without MS.
Jeremy Henderson:
Thank you, Des. Those words are the perfect note to end on. Thank you for joining us on The Raw Nerve for sharing your story and your insights, as this particular chapter over a decade of leadership and voluntary service to the MS community draws to a close. I’ve had the pleasure of working at MS Australia for just over two and a half years. I’ve known and worked with you professionally over that time. Can I just add a personal thank you for your support and guidance that you’ve provided me over that time, it’s been very much appreciated, and can I wish you all the best for the many, many years ahead. So thank you, Des.
Des Graham:
Thanks, Jeremy.
Jeremy Henderson:
You’ve been listening to The Raw Nerve. If you’ve enjoyed our conversation with Des Graham and found it insightful, we’d love to hear your thoughts. Leaving a review helps us to reach more listeners and continue bringing you great content. Plus, your feedback is invaluable in helping us improve. If you have a moment, please leave a review on your favorite podcast platform, we’d really appreciate your support.
And lastly, if you or someone in the MS community has an inspiring and engaging story to tell, we’d love to hear it. You can drop us a line at info@msaustralia.org.au.
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