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:
Thank you for joining us today. So, we’re meeting here today on the eve of World MS Day. First question, how important and exciting is it to you to see that here in Australia, for MS Australia, our focus is firmly on MS nurses, the role of an MS nurse and their value to people living with MS? What does that mean to you as MS nurses? Maybe start with Emma.
Emma Christian:
It’s incredibly exciting. I think you would all agree that after nearly decades, certainly for some of us, over decades working in the field, that to have the recognition and the evidence finally after all of this time that there is value in the work that we do on a daily basis is just so fantastic, and yeah, very excited about tomorrow and , what’s going out there I guess within Australia.
Jeremy Henderson:
Tim, do you think that, not even MS nurses, do you think nurses get the recognition that they deserve? Do you think there’s more of an understanding and appreciation of nursing coming out of COVID now?
Tim O’Maley:
I think if we just look back at the news through COVID, referring to the nurses as heroes, we always knew we were. None of us liked to put our hands up and acknowledge that kind of thing, but in just following on a little bit from Emma, it is actually quite humbling to see MS Australia in particular putting us at the forefront and making us a very big focus of World MS Day to just draw attention of the absolute depth of talent we have, the variety of work that we have to do, and how hard we have to work to keep our positions.
Jeremy Henderson:
Belinda, we hope that shining the spotlight on the wonderful work that MS nurses do and the contribution you make will make a difference and will help us in our advocacy aims to get more MS nurses out there. Are you hopeful that this work will be beneficial? Have you seen this done before, this push, this effort to highlight your work? Has that been done before or …
Belinda Bardsley:
No, it hasn’t. I think this is the first time that there’s really been, like you say, that spotlight placed on the role that we do as MS nurses. We do see recognition of nurses in other roles. We’ve seen it particularly in breast cancer setting, which is an absolutely worthy recognition of the role that those nurses do. I mean, with the MS nurse care report in Australia, that really highlighted the importance of the role that we make in keeping patients well, reducing disease progression, keeping patients incredibly well, and improving their quality of life, and improving health outcomes overall.
I think it’s so important that we ensure that every person diagnosed with MS has access to an MS nurse. Whether or not they choose to embark on taking up that opportunity is a different thing, but I think it’s so important that they have the opportunity to have access to an MS nurse because it was so evident from the report findings the difference that we make in terms of those health outcomes in the long term. Right from the point of diagnosis, I think it’s crucial that they have access because I think it’s really evident to us, to Emma and Tim and I, that the difference that we can make from that point of diagnosis in changing the potential trajectory of the disease is just incredibly stark. The difference that you make at that point is so important.
Emma Christian:
That’s why it was so concerning, I think, the results of the report that a third of people in Australia without access or knowing that we exist is quite shocking actually-
Belinda Bardsley:
Yeah, that’s right.
Emma Christian:
… considering the value add that we have to people’s lives overall in community of MS nurses.
Belinda Bardsley:
Absolutely.
Tim O’Maley:
The absolute positive was what a difference we do make when people have access to us, and it’s a broad degree of benefits … There wasn’t one specific thing that people found advantageous. It was reducing hospital presentations, reducing GP needs, just who do you call on when you’ve got questions and your new versus I’ve still had it for 20 years, and I’ve still got questions.
Belinda Bardsley:
Yep, absolutely.
Emma Christian:
That’s the beautiful thing about nurses, I think too, is that people feel connected in a different way, I think often to the medical fraternity, and yeah they can ring us for those silly questions and things that are not silly but that they don’t want to bother other medicos necessarily about, and we’re able to advocate and support them through that by listening and re-educating and, advocating.
Belinda Bardsley:
Absolutely. We’re a safe space, aren’t we, in a way. It’s okay to call the MS nurse.
Tim O’Maley:
I just love the calls when you get somebody who says, “Oh, I’m sorry, this is probably a really dumb question,” when they’re people that you know there’s no such thing as dumb questions, but there are dumb answers, and you’ve known me long enough to know that we’ll get through it.
Jeremy Henderson:
So, obviously, you’re on the front lines, and in terms of you have anecdotal evidence every day of the difference you make in the lives of the people that you’re caring for, but do you also see the other sides of that, the people that maybe haven’t had access to MS nurses when they ideally should have that come to your clinics and then you’re providing with that treatment. Do you see the flip side to that where there are gaps still and that people maybe haven’t been getting the access to an MS nurse that they required from day one?
Belinda Bardsley:
Yeah.
Jeremy Henderson:
What does that look like, I guess?
Emma Christian:
I guess that really highlights the community MS nurse role to the acute MS nurse role and how important both of them are and working together. In community we support private neurologists where people are obviously paying that service in some years they’ll decide not to go back for that appointment because they can’t afford it. Many years can go by where we’re having calls from people who are not doing so well. They might not have had an MRI in five years or 10 years. They’re still coping with whatever medication they were started on, but they haven’t been back to see their neurologist since, and it’s been a financial issue and still why they haven’t.
So, that is always concerning, and we’re very quick to obviously triage and try and support those people to get access to neurology and acute care support, they’ve missed out for all of those years, I guess from a bright North lifestyle, all of those aspects and that information.
Tim O’Maley:
Even just in a medication management point of view, we’ve had a few drugs get pulled from the PBS recently, and we reconnected with people that haven’t really touched base for a very long time. Good that they’ve done really well, but they’ve kind of forgotten what’s involved with making sure that they’re managing their MS as best they can and the types of things we can put in to their world that can help them along with that journey.
Emma Christian:
Honestly, it’s changed so much, hasn’t it, in the last 20, 15, 20 years?
Tim O’Maley:
Oh, yeah.
Emma Christian:
So, understandably, people were seen at a time where there weren’t the medication options, and they weren’t needed to be seen every year or let alone six-monthly for MRIs and reviews. So, it evolves for them, and the last thing that they were told by a doctor is what they recall and what they remember, and that’s where the specialist knowledge is so important, isn’t it, with the nurses in there to feed into their GP and then, , neurology from there.
Belinda Bardsley:
Absolutely, and keeping in touch with somebody who’s still on top of the current practice is so important, and if they can’t be their neurologist or if their neurologist isn’t potentially an expert in MS, having access to an MS nurse who is keeping on top of all the current practices is so important because you can’t regain that lost ground if there’s been this period of time where they haven’t engaged with necessarily the best practices or the newest treatments. There can be that lag in terms of their health outcomes, and that can be really hard. We all have case studies where we’ve seen people who have not done their best or not done so well because they’ve not been on the best treatment for them, and they’ve just slipped.
Emma Christian:
And not even aware of the brain health principles because it was pre … That, again, has gained so much momentum in the last five years.
Belinda Bardsley:
Yeah, that’s right. It’s about 10 plus.
Emma Christian:
That’s different story.
Jeremy Henderson:
Can I maybe go back to the beginning and ask a question I should have asked it the very start, which is, what is an MS nurse, and what does your day look like? Presumably, it looks a little different for each of you, and presumably, every day looks a little bit different from the day before. Being an MS nurse, it’s quite broad. I wonder if you could all possibly just speak to what is an MS nurse?
Belinda Bardsley:
Well, look. I’ll start, I suppose. MS nurses can work in a variety of different settings. Like Em said, they can work in a community setting, and they can visit people in their homes sometimes, or they can be hospital-based. They can be working in clinical trials. So, I work in a setting in a public, tertiary public teaching hospital, and our service caters for people who are both on standard treatments and also who may be interested in a range of clinical trial options. So, we have nurses who are research nurses, and we have nurses who are clinical nurses, and we see patients in the outpatient clinic setting. We see patients in research clinic.
We all have skills in terms of understanding what multiple sclerosis is, the range of symptoms that it can entail, the sorts of symptoms that patients will encounter, and the sorts of immunotherapies that may be utilised to treat the disease. There’s a lot of logistical aspects to managing MS these days and a lot of potential side effects and things that an MS nurse needs to know about to be able to safely care for people who are on those treatments. So, there’s a whole raft of areas that we need to be very well-versed in. So, it’s quite an expert area of specialist knowledge.
I think we all practice in slightly different ways and around the country, there’s … or we think around 80 MS nurses, but I think that number is changing and dwindling perhaps even at the moment where nurses are not necessarily able to secure fixed-term ongoing permanent funding, and so that can be a real problem. So, our numbers are not particularly well-formed, but in terms of what the MS nurse does, I’ll let Em and Tim speak a bit more about that.
Tim O’Maley:
So, being very self-centered, I actually have two jobs. I work at two very different hospitals. I’m employed as a clinician. 99.9% of what I do is dealing with individual clients right from the point of diagnosis to relapse management, triage through phone services to immunotherapy education and an awful lot of pharmacovigilance. I had the luxury of also being allowed to prescribe certain medications order pathology and then be accountable for reviewing all of those things to make sure that what we’re doing with the person is safe and effective and that we’re monitoring their treatment with them as best can.
I do clinics with neurologists side by side. I do my own clinics nurse-led, just myself, patients, families. One hospital, I have 25-minute appointments. The other one, I have the luxury of an hour appointment, which I don’t think one is technically better than the other. I wish we could balance across the two sites because there are things that you need an hour, and there are things that somebody doesn’t want to be there any longer than 15 minutes, but we still continue to have a different day every single day.
Belinda Bardsley:
Yeah, it’s never boring.
Emma Christian:
No, that’s right, and community again similarly to Tim, although not prescribing but doing a lot of fielding, a lot of calls on a day-to-day basis around symptom issues, relapse management, advocating for people, education around treatments, people who are switching, family planning, all of those sorts of things on a day-to-day basis happening.
I think the point of difference to acute is that we do do home visits, and so when people are wanting to start an injection, we have the luxury, which I feel it is in many ways, to be able to visit that person in their own home if they’ve got young toddlers or if they can’t drive because they’ve got optic neuritis, or they’ve just had so many medical appointments, they’re completely overwhelmed, we can go to them. That’s such a valuable part of the service that we can offer in community because we can see people in their safe place, their home environment, and assess a whole range of other things while we’re there with that education and also educate family who maybe can’t attend the clinic appointments and children. There’s many layers of people’s lives that are affected. So, yeah, that’s one of the aspects of the community that I really enjoy. Yeah.
Jeremy Henderson:
Do you take a lot of professional pride in being able to work in a profession where you’re allowed to invest so much time with the clients, with the patients that you serve? So, when we came out and we did the filming and we met with you, and we met with your patients, with your clients, it was really, really clear the amount of value they had in the relationship they had with their MS nurse, the connections they had. I mean, we’ve got some beautiful video, and we’ve got some photographs, and none of that was staged. You just look at those photos, and you look at the way you’re looking at your patients, the patients are looking. We spoke to them, and it was a very much a common thread that they really, really appreciated this holistic healthcare where they weren’t a number, they were a person, they were known to, you understood them beyond just their disease but who they really were as a client.
Tim O’Maley:
Definitely take a lot of satisfaction in it, but we’ll say it’s actually been a bit of a fight to get to the point where we can actually say we need to be very, very flexible in terms of what we can offer, and it doesn’t really matter about the setting, whether it’s a home visit. Emma might do an injection training that takes 30 minutes with one person and two hours with the next.
Emma Christian:
Yep.
Tim O’Maley:
It’s knowing which person and how they’re actually going to respond to what we can get out of a 25-minute appointment and have the courage to actually say, “Look, we’re not going to get through this. What I want to do is actually work out how we can bring you back into a long one. I’d like you to bring your family. I’d like you to bring the people that matter.” That’s actually been a bit of a bureaucratic battle because I’m employed by two different health districts, and they watch money coming in in terms of encounters. So, some of those things have been a bit of a very proactive approach to how we make sure that we’re giving our patients and our clients exactly what they want, when they want it to the best of our capacity.
Emma Christian:
But that has been challenging, hasn’t it, let’s say, so like with inconsistent funding, resourcing issues over decades. I still remember as a junior MS nurse 20 years ago, going to sleep at night wondering, oh, I’m not sure I’m going to have a job next year like – I don’t think we made enough on the lotteries] to support – because we don’t get any MS nurse funding in community. So, yeah, it’s relying on the goodwill of the community for our roles basically, and that comes with that insecurity, but we’re all still here because we believe in the role so strongly and worry about if the role didn’t exist, what would happen? People really, really do need that support from a social perspective, a holistic perspective and many reasons.
Jeremy Henderson:
What do you think has … – that model of care, is that mirrored elsewhere in the health system? Is it born from necessity in terms of the complex needs of the patient? Why do you think MS, nursing has got to this point, this good point?
Belinda Bardsley:
I’m not sure if it’s mirrored actually, but I mean, there are not many chronic diseases where I think you have that really long-term relationship from the point of diagnosis right through where you’ll see people periodically over… well, Tim’s known people for 25 years…I’ve known patients I’ve worked in the field 15, 16 years now, and again, I can say, like Tim and I’m sure like Emma, that we’ve all got patients that we’ve known from the time they were diagnosed from the point where we were just new MS nurses. That’s a pretty … I mean, I always say this, I always feel like I’m in such a privileged role because you get to know so much about them, their families, their situation. You kind of do develop a really special bond, very special relationship with them.
Emma Christian:
You see them get engaged, married, have their children.
Belinda Bardsley:
Yeah, absolutely.
Emma Christian:
The ups and the downs, and it’s a touch point in and out, and in out over many years.
Belinda Bardsley:
All these years, all these years, and it’s pretty special, and because also, I think the point of diagnosis is usually when people are in their 20s or 30s, that’s when people are usually diagnosed with MS, it’s that time when they’re building their careers, they’re building their families, they’re building their lives really. Not many chronic diseases diagnosed at that point of that critical time in their lives. So, we are there kind of for the long haul really, aren’t we?
So, I mean you think of diabetic nurse educators as an example where they’ll have an input, an interaction with somebody to provide the care that they need, and then they will be able to exit. You think of the breast care nurse where it’s an intervention and then again, a withdrawal. I think our care, I can’t think of a similar role really where there is that long-term input. Perhaps there’s some sorts of gastrointestinal kind of disorders, some forms of like Crohn’s disease or something, but I can’t … that ongoing input from nurses, I can’t really see a similar model of care.
Tim O’Maley:
I think one of the things that … and MS, whatever you read, whatever starting paragraph on a website or a paper, it says everyone is unique with this disease.
Belinda Bardsley:
Yes.
Tim O’Maley:
Again, being an old man, I’ve never come across too many chronic diseases where there is so much ammunition provided to the person living with the disease to make decisions not just about what they would like to do with their own world in healthcare but in terms of actual drug treatment choices, what medications they think will fit into their lifestyle, family planning, and how we actually work with them through all that. So, I think our patients have a lot more choice, and we’re a big part of actually making sure they’re aware they have choice in that decision.
Emma Christian:
Which is confusing-
Tim O’Maley:
It is. It is.
Emma Christian:
… for them in the initial stages [inaudible].
Tim O’Maley:
Too many diseases where you walk out of your specialist office and say, “I’ve got three drug booklets. None of which words I can pronounce,” which is a little better than a few years ago. We used to work out with six or 10 booklets and hopefully, a card for an MS nurse that you could recognise some questions hopefully. So, yeah. I don’t know thatthere’s too many other diseases where … and in very, very kind words to our neurology colleagues, the trust they have in us to actually give that side of the conversation with the patient, with their family, back to us, it’s always kind of comforting when you say, “Well, so what did your neurologist told you?” and they say, “Talk to you.” That always means good. That’s what we want to hear.
Belinda Bardsley:
Yeah. We do want to hear that. There is method in that madness. The reason for encouraging patients to take ownership of their treatment decision is we want that engagement. We want them to make that decision so there’s good evidence to show that that helps them to engage with that over the long term that will help them to be adherent and to have better outcomes in the long term.. We certainly help them make that decision.
Jeremy Henderson:
That was going to be my followup questions. Obviously, having agency and choice is empowering, but I guess my thought was, beyond that, what is the … just for the layman or the general public just listening to this podcast, that idea of being given a choice of medications and having that agency to decide which one you might take, I wonder if you can explain that a little bit. Obviously, is it about the impact of those drugs or the convenience of those drugs? What kinds of decisions have people … Why is that agency given to the individual?
Tim O’Maley:
Yeah, that’s a wonderful question, Jeremy. All of those factors actually come in, and sometimes, it’s a little bit we’ve got a bit more time to dig into the person’s world. Where are they up to with family planning? Some drugs are very safe. Some drugs carry a little bit of risk. Some carry more monitoring than others, and sometimes, it’s just working out what does a person actually want to fit into where they are at their stage of not just the diagnosis, their journey, their symptoms, understanding that.
The other side of it is it’s not all about the drugs, and I think that’s a really important part of it. We don’t have a test that will say this is the perfect treatment for you. We also have a great role, as Emma’s alluded, to the brain health. There’s so much more the person living with the disease can do to make their life better than just rely on a prescription medication. So, it’s making sure it is a packaged conversation. It is [inaudible 00:23:53] is a small amount of input via a drug. The rest of it is, what are you going to do, and how can we help you with them?
Emma Christian:
Well, that’s very empowering too isn’t it for people who have moved on to more of a secondary progressive phase and with progressive MS at brain health – data is there and that there is some control that they can still take that will impact their long-term progression.
Tim O’Maley:
I think one of the things we do sometimes forget too is people with MS are not immune to every other disease on the planet, and sometimes, it’s making sure that we are double-checking in with them that everything they’re doing about their normal health life choices is a part of that as well.
Emma Christian:
Which is why that first year is particularly challenging, isn’t it, because you’ve got all these new symptoms, sensations, trying to understand what’s going on with your body, but then there is the normal stuff that goes on as well. So, yeah, it’s normal to to be hypervigilant at that time, I guess, isn’t it?
Belinda Bardsley:
Yeah.
Emma Christian:
Yep.
Belinda Bardsley:
Yeah.
Jeremy Henderson:
So, if we can come back to the number of the shortage of MS nurses in Australia, and Belinda, I think you spoke of the number a few minutes ago, firstly, why are we seeing, I guess, a decline in the numbers of MS nurses? Is burnout an issue? Is it about an aging workforce? What’s impacting on the numbers of MS nurses, and then what do we need to do to fill that gap?
Belinda Bardsley:
Look. I think, yes, burnout is an issue. We’ve had a couple of nurses that I know of who have found it just unreasonable, the demands that are being placed on them, the crazy kind of nurse patient ratios. We’re talking about 1,200 patients to one nurse in a hospital. Obviously, there are neurologists as well, but there are ridiculous demands being placed on nurses. Somebody I spoke to just two days ago is employed halftime and has 800 patients to care for.
This is a real problem across the country, and a lot of these inquiries are funneling through to me because I was involved in the MS Nurse Care report as a co-author. So, I hear about really unfair employment contracts, fixed term positions, soft funding, no support from hospital execs, no surety of funding. So, some people are unable to get a mortgage, for example, because they don’t have permanent contract.
People do just find it absolutely overwhelming and exhausting. The phone doesn’t stop ringing. Every patient with MS, we’re all here for the right reasons. We all really just have a sincere and genuine desire to help, but you can’t continually give when your cup is empty. It’s just not sustainable. So, there are people who have left because of burnout, and there are people who have left because their contracts haven’t been able to be renewed.
We are an aging workforce, myself included. So, we really do need to generate new positions. We need to bring younger, keen, enthusiastic, vigorous, vibrant nurses into the fold. We really need to sure up some urgent streams of funding to try and fix this problem. It really is becoming dire. We know that we’ve got an increasing prevalence of MS in the country. We’ve got the new prevalence data that indicates that we have a rapidly growing number of cases of MS, and we just don’t have the workforce to sustain that.
I think there’s a real gap too in the private sector where private neurologists don’t have somebody that they can call on if they want their patients to see an MS nurse. They don’t have any way of really grabbing somebody. I think Em is available-
Emma Christian:
Well, that’s where the-
Belinda Bardsley:
… to some extent.
Emma Christian:
… big gap in community.
Belinda Bardsley:
Yeah. So, there’s a lot of goodwill deals being struck, but yeah, this is a big problem, a really big problem. We know too that there’s a higher prevalence of MS in the colder climates, so I think if we look at Tasmania and Victoria, there’s certainly a higher prevalence there than there is in Queensland, but mind you, Queensland-
Tim O’Maley:
They’re all moving to Queensland.
Belinda Bardsley:
… is very stretched. They’re moving to Queensland?
Tim O’Maley:
COVID, they’re coming.
Belinda Bardsley:
Yeah, we are stretched across the country. We really are, so we desperately need to work out what we’re going to do about that.
Jeremy Henderson:
Tim, do you have a sense that … Sorry, Tim. Do you have a sense that, is it the funding issue that’s the biggest problem and if we could secure that funding, we’d be three quarters of the way home or is it … Obviously, workforce as well. If we had the funding, would we still struggle to fill the places?
Tim O’Maley:
Look, I think education is something that’s really, really important. You don’t just decide you want to be an MS nurse. It needs to lead in with pathway. As a group around Australia, we’re doing some wonderful things to get at least certificates in MS nursing and with the Australian College of Nurses and little things like that popping up. I’m just going to jump sideways just backwards a little bit, but I’m actually going to acknowledge that I left a job about 18 months ago that I loved, absolutely loved, 13 years. Burnout, couldn’t keep doing what I was doing. I put myself in a position where I was on call seven days a week for 13 years, holidays, public holidays, and it was because there wasn’t anyone outside of those hours filling gaps because MS isn’t a seven-hour a day disease. People have problems on a weekend and things like that.
I only able to stay away for about five weeks before I very quickly applied for a job back in the MS world. Different setting, different boundaries, but absolutely, it’s the security that I think is the big thing for people, so I’m trying to kind of answer two questions in one go there. I think knowing that we’ve got the professional colleague support was the other reason I came back. These two ladies are my friends. They’re not just my colleagues. We’ve leaned on each other for years. We share, we network, we look after each other, but we also educate each other. We share ideas. We share, have you had experience with this? We always do that, and we’ve always done that. So, that’s the other side of this thing. We look after ourselves.
Emma Christian:
The community is amazing. The MS nurses.
Belinda Bardsley:
It’s been close. Yeah.
Emma Christian:
It kept me going too, I must say. We’ve all had our really tough times where we’ve all thought about leaving because it can get very overwhelming. Yep.
Jeremy Henderson:
We spoke earlier about the excellence in MS nursing in terms of the service that you deliver, but presumably, that’s a double-edged sword when you’re under pressure, when you’re on demand, but you’re still trying to provide this holistic, really substantial service and not just voted in, but at the same time, you’re dealing with larger numbers of people living with MS and fewer MS nurses. Obviously, that’s creating a real tension there.
Emma Christian:
Yeah, exactly. We just continue to absorb at the moment, but recently, it is-
Tim O’Maley:
A point.
Emma Christian:
There’s got to be a point that-
Tim O’Maley:
Perhaps a strange way to answer that question is, Emma, who covers you when you’re on holidays?
Emma Christian:
Well, I’d been fortunate in recent years, I must say that we stand alone, I think, in the country, I must say, where I have some amazing nurses that I do work with, but that’s because of the client feedback of the value add of the nursing team. It’s been prioritised wonderfully by our management who have prioritised that from a fundraising perspective too – pay for the MS nurses, but I know that’s certainly not the case interstate and over the last decade. Again, we’ve had decline in community across the board, haven’t we? There’s really not much in existence in the traditional MS specialist nurse role like I’m doing at the moment, which I’m holding onto for dear life.
Tim O’Maley:
I think it was a huge school of thought that once the NDIS came out, the people with MS wouldn’t have needs. We know that most people with MS aren’t going to meet the criteria for the NDIS and that the things that we can do is hopefully to be a part of them not needing that at some point. The complete flip of that is making sure the people who should be getting some support from the NDIS are willing to put their hands up and apply and help them through that process as well. That’s very difficult. There’s not a lot of people out there with the knowledge of MS to actually do an NDIS application with people the right way to get that through organisers. There’s some wonderful neurologists and GPs that try, and they get rejected 99% of the time, and then they come and see one of us.
Jeremy Henderson:
So, tomorrow’s World MS Day, and maybe just to spring this conversation to a close, the focus will be on you and the valuable work you do. The theme this year again is one of connections, and in the video that we will launch tomorrow, we’ll very much see that connection on display, that wonderful connection you have with the people that you serve. I wonder if you can just speak to that again and to that value of the connections you’ve formed with your patients and with your clients and how valuable that is to you.
So, when I met with some of your clients, it was clear, very, very clear what they were getting in terms of that support and that feeling that they were seen and they were seen not just through that lens of the disease but actually seen as a person and understood and actually known. What do you get from being able to work with clients, with patients over many, many years? You spoke before about seeing them go through life events like marriages and children. What do you get from that professionally and personally that I guess keeps you motivated and actually really gives you a real satisfaction? We’ll start with Belinda.
Belinda Bardsley:
Look, like I said, it’s such a privileged role. It’s deeply, deeply satisfying. It’s never dull. It’s intellectually stimulating, but most of all, it’s just deeply rewarding working with people and feeling like you come home at the end of the day, and you’ve actually made a meaningful difference on so many days of the week, particularly working with people who are newly diagnosed and making it a little bit less frightening, a little bit less uncertain for them is just unbelievably satisfying. I think we probably all feel that way. If you can make them a little bit less frightened and a little bit more confident about how to embark on their life with this diagnosis, what’s better?
Jeremy Henderson:
Yeah. Tim?
Tim O’Maley:
I just love the continuity, and that’s awful word when you’re trying to ad lib things. I look forward to seeing how people have accepted the challenges of their diagnosis, their treatments, their management, and talking to them about the things that have worked and not worked for them and what they’ve tried again. I certainly enjoy when they bounce those ideas and come in even left of centre with a pile of printouts from the internet, and we just talk through what might or might not be good for them because we don’t have all the answers. It’s a disease that we still don’t know what it’s going to do and when it’s going to do it, and how we can just give people some safe ammunition to go try anything. We’ll only tell you if we know it’s bad, but anything else is, let’s have a go, see what works for you.
Emma Christian:
I completely agree with what Belinda and Tim have said. It is the connections over such a long period and you become a part of that person’s story in a sense, don’t you, – you care. We care about them and what happens. I just think there’s nothing better than getting a phone call after not talking to someone for years sometimes, like Tim had said, and they say, “Oh, thank God, you’re still there.” It’s just, “Yeah, sure, what’s going on?” It is a privilege.
Jeremy Henderson:
Wonderful. Thank you. Thank you so much for the amazing, incredible work that you do, and thank you for joining us on The 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.
