Neuro Pain, Neuro Gain

Episode Transcript

CG-C: Calum Glendnning-Clark
PC: Pip Cave

CG-C: When we look at the world around us, how it is built, the design of environments, use of technology, stairs, doorways, public transport, health care, employment. In its simplest form, we see a body and in its most complex form the construction of a body. Such a constructed body is based off of an assumed majority or norm, branching back to industrialization and eugenics. What about the 1 billion people in the world who are differing, varying, or dissimilar or unalike or divergent, in terms of their psychological and physiological functionality?

If the body is something fluid and infinitely variable, what are the consequences of a world that assumes and prioritizes a body that functions in a particular way?

My name is Calum Glendinning-Clark, and I live in a divergent body as a walking paraplegic, and a writer with a brain injury.

Pardon the paradox.

I am to raise awareness about one of the largest minority groups in the world. This podcast will explore and discuss the barriers surrounding accessibility and possibilities when it comes to disability support, recovery, and community. It will focus on individuals’ experiences, identifying and navigating these barriers, along with the services in place to assist in this process. It will also discuss the emotional as well as physical impact of these barriers in the day to day lives and experiences of people with a disability.

In this episode of Divergent let me take you to the area of Australia that I moved to post-injury - Newcastle of New South Wales. I discovered this city at the same time as I first started discovering my divergent body. Newcastle is a metropolitan beach city and the second most populated city in the state, well known for its beautiful beaches and coastlines. If you come visit you’ll no doubt see the large residential areas of stand-alone houses and terrace houses, occupied by young families and retirees, looking for a more affordable life than the one available in Sydney.

So, it kind of makes sense that as a 27 year old with a spinal cord injury and brain injury and no real financial fall back, the idea of renting in Sydney again wasn’t going to be a reality for me straight away.

I was moved from the full time/fast pace, living week to week, rental life that I was used to, to a family home in the residential, slower pace, spaced out, unfamiliar Newcastle. What came with this was the loss of connection to anything familiar.

Like all things in my life that happened post-injury, moving to Newcastle is part of the story of navigating my disability. It’s also the place where I want you to situate yourself in for this episode as I take you to the neurological rehab I have been attending for the last year or so, called Breaking Boundaries.

Places like Breaking Boundaries, which are mainly called activity based therapy or neurological recovery centers can be hard to find for someone with a disability, because it is often attached to an unfamiliar world, and for me, I got very limited information about neuro rehab centres from the hospital I was at, or as you’ll hear in this episode, even if that information is given, it is normally mentioned by name in passing at a time when you are often trying to put the pieces of your life back together. At this time my main concern was about the extreme pain I was experiencing and just getting through each day. Researching potential services available to me through the NDIS was really beyond me in these early months. But eventually I was able to seek this service out and advocate for it to be included in my funding. Because of this, I want services like this one in Australia to be made more familiar to the listeners of Divergent.

Breaking Boundaries is a gym with big open roller doors in the industrial area of east Mayfield, a ten minute drive from where I’m living at the moment.

Breaking Boundaries is a neurological rehab which aims to identify each individuals ‘goals ’and figure out ways to support them toward those goals, whether this is addressed in the gym, at home or by a referral to another service for things like chronic pain or bowel and bladder issues and many more issues that come with the various disabilities that they help with. ‘Goals’ is very much a loaded word in Australia’s National Disability Insurance scheme vocabulary, as it is a benchmark associated with funding. If you want to know more about the NDIS, go back to episode 1 of this podcast where I go into detail about my experience of it.

For me, it might have been this initial concept of a ‘goal’ that got me through the roller door to Breaking Boundaries. At this time though, I lacked perspective as to all the things associated with my disability, so my initial ‘goal’ was almost purely to do with physical recovery. At the time I was hardly exposed in person to anyone with a disability or people working everyday with divergent bodies, with an actual understanding of how that divergence might affect the individual.Each time I came in, at the beginning to Breaking Boundaries, I would chat to other gym goers while waiting for my session to start or just after it finished. We’d ask each other things like:

“Hey, how are you?”

“How are things going for you with your NDIS plan?”

“You know what you should try? It helps me the most with my neuropathic pain.”

“Can I tell you about something that’s really bothering me this week?”

Then I would look up to see someone moving in a different way or reaching and lifting something for the first time.

Everyone would silently hold in their cheers so as not to distract the person mid exercise. This type of community feel is contagious and I think it was at that time, after starting out with Breaking Boundaries that I started to explore reducing some of my mental health medications that were prescribed as a band aid, to cope with the isolation of my injury, the difference in my divergence.

Breaking boundaries became a place that linked me in with I have to say some of the most important parts around the wider treatment of my disability. I could have conversations there about spinal cord injury specific things, about the barriers people face, about the larger questions that interested me and be met with openness and thoughtful responses.

Then I would walk out the roller door to my support workers car or play phone tag with the taxi driver trying to find their way up the industrial drive, feeling differently than when I came in and thinking about how that movement, but not just movement, that connection, conversation and education has made me feel curious to keep learning and exploring until next time I’m back. Now I know I have a place to go. Before then … I didn’t.

Taxi drivers always get confused finding the pick-up location for people after their sessions because it’s one of those places that sends Google Maps into a hole of confusion.

Similar to these taxi drivers, unless you know about it already or have been told about it, neuro rehabs like Breaking Boundaries can be a hard place to find for someone with a disability.

In this episode of Divergent I want to honour what Breaking Boundaries do, and provide you with more information that you could use as a resource if you are or someone you know is looking into neuro rehabs. You’re about to listen to me have a conversation with Pip Cave, director of Physiotherapy at Breaking Boundaries. Since graduating as a physiotherapist in 2005, she initially worked with elite athletes until she began working with National Rugby League player who played for the Newcastle Knights until he sustained a spinal cord injury playing the sport.

For this recording, I went to Breaking Boundaries, where Pip and I spoke and recorded in one of the therapy rooms in the gym. We did this because each physiotherapist at Breaking Boundaries tends to see around 6 clients a day. And that is 6 hours for just the actual one to one contact, outside of note keeping, report writing, referrals and the extra time physios take to get to know people. Because of this, I am grateful for Pip taking the time out of their busy schedule to speak with me. Because of the demand on her and the service’s time, this is why the recording was done on site and was not done in a studio.

CG-C: I guess the first point I'm really interested in to get to what Breaking Boundaries is, and why it’s here would be how it came about. And that background, you had the Newcastle Knights.

PC: Okay, so I was a typical physio, I graduated and went off in wanting to work in sports. So that's what I did. I went off and did a sports masters and I was working with the Knights when Alex McKinnon got injured. And when he was coming back, so he did a stint in rehab. And then he went up to the Gold Coast to do some further therapy, and then when he was coming back, we were looking at getting him a physio physio to continue his spinal work. I thought oh this will be easy! We’ll just get a local spinal physio involved - and there weren’t any. Well, there was sort of one at the public system, who of course, had such limited availability, he could only see him, you know, an hour or two a month.

CG-C: Oh, wow.

PC: He was going from, you know, essentially daily therapy for two hours a day making really good progress to coming back and having, you know, very minimal input, not through the bulk of the therapist but simply because that's what the system had. He was just overworked, it was just him and all of Newcastle.

CG-C: Yeah. That time that was around 2000 was around 2014?

PC: Yes.

CG-C: And that just happened to be when kind of the NDIS was kicking off in Newcastle?

PC: Yeah, it was. Yeah, that's correct. I didn't know when we started out, didn’t know anything about the NDIS. I learned about it, probably a few years later. 2016. And then I realised the NDIS was out there.

CG-C: So you were kind of driven towards creating space for people to access neurological rehab recovery, or even mainstream physio before that was something that would be funded for them by the government?

PC: Yes. Because it was just it just needed to be there. You can’t have people coming back at the very start of their rehab, and then having such limited resources for them.

CG-C: Yeah, I mean, that was my experience. You know, you go to a service and on paper you think, this sounds great. It's got everything you need, ot physio social work, like it’s great that that space is even there, but then it's not they don't really have the time as you said, perhaps to give you what you really need.

PC: Or what you want.

CG-C: Yeah, actually, that's a better way of saying it. Yeah.

PC: And then, and what the government system says that you need and what you know as a human that you need can also be different things. And it can also just be the time that you're discharged. If you're discharged at a neutral time, when there's no one else, you might get excellent therapy. If you’re discharged at the same time as three other people that are all coming back up to Newcastle, then your chances are decreased because there's more people to deal with all at once.

CG-C: Yeah. Um, so in in saying that, was it hard to justify when the NDIS rolled out, were you receiving clients, or participants or I guess, people coming to train at Breaking Boundaries at that rollout? So that would be interesting in terms of how you then had to justify the service.

PC: Yeah, when I started Breaking Boundaries in 2016, the NDIS was established in Newcastle, yeah, everywhere else, but I was just learning how to use it. And so it was an interesting starting point, because I think one of my first ever patients that wanted to come in as spinal cord injury was told by NDIS, No, you can't. that's health’s problem. And at the time, he wasn't getting any rehab, through health. But it was, so it was just quite bizarre. Yeah. But we had him anyway, and we got there. And then he got the funding and just luckily realized that there was a huge need for...this person went from not being able to use their arms to being able to, you know, reach their mouth and things, which is a huge change in someone's life.

CG-C: Yeah, massive.

PC: To being you know, spoon fed to being able to feed yourself. Big change.

CG-C: Yeah. And in terms of like, how the NDIS responded to that, was that what I always find interesting about coming here is you feel backed up in terms of not necessarily just the gains, but then justifying the gains you've made to make it of value to that system. So it has someone behind you saying, look, here's two measurements over that six month, one year period of how this person has access now to that limb, or that movement, that then makes them more independent, and therefore they don't need as much in this other area.

PC: Yes, we're happy to really justify it and cut down to the nitty gritty with clients, and then also with the [inaudible] and explain it to them you know this is why this is a beneficial service.

CG-C: Yeah. And I always think that's really interesting how, you know, when you come at it from sports, from where you came in, perhaps you're, I don't know if this is how you felt, but it's connected, you know, to movement directly. But in a disability perspective, movement actually becomes transferable into all these other areas of how you connect to the wider world around you.

PC: Absolutely. And that's why it's so important. And the reality is, we're quite happy to spend hundreds of 1000s of dollars, rehabbing one of our sports stars little toes. So while you're saying to improve someone's ability to walk or function or you know, for themselves, again, is access to community and be able to hang out with their friends. That's far more important than someone’s toe or finger. You can cope without them.

CG-C: This is, it's so interesting when you think about that, how much access of service like this gives, but then it wouldn't be... Or it's not necessarily standard protocol to be referred here if you have a neurological injury, I mean, I can, I can really only speak from my own experience, but coming home, and then you'd have to go, I engage with just exercise physiologists, a person at a local gym, and you're going online looking for things and then you eventually find something. But it's I find that really interesting in that the NDIS provides that as a service that could be available to anyone if it's specific to needs to their disability. But where's the disconnect? How do you get the information to know that that's a possibility? What are the choices?

PC: Because it's all about choice, but then they just throw you out, say 10 names and physios don't actually know whether they've got experience with what you're talking about. Yeah, there is an absolute disconnect there that we're sort of working on. We're trying to work through it more directly with the rehab services, so that people coming to Newcastle know that this is an option. And if it's not, then that's fine, but they know that these are their options and that these are the sort of people that can address their needs because there's a huge disconnect at the moment. We do still have a lot of people that get a referral after they've gone and seen their mainstream physio. Its ýou know, a struggle to get in the door and then have therapy that they're not really sure what it's doing. And then they come in, ah, this is what I'm missing.

CG-C: Do you think that's one of the distinctions because I guess like a lot of people who are listening won't really know they might be like but physio is physio not really see... I guess the difference? And maybe the distinction would be the more my experience of Breaking Boundaries is just more informed in terms of the needs you might have that would be specific to your disability, as opposed to just working with the things that do already work for you.

PC: That's, that's correct. It's when you sort of have that knowledge base. And we will also just spend that time with you to figure out what, what in your mind do you want to work on?

And what is your goal? And how do we address that, as opposed to the regular, which is, like you said, working on things that you've already got? And so we will, we're happy to go outside of the box and go, what do you not have? And what would you like? And is that a possibility? And but in a way that's justifiable.

CG-C: Yeah, that could be quite a sensitive difficult process to explore with people.

SC: It is, but it's also their process to explore and that's very important for people to understand. It's not for me, to tell someone that their goal of, you know, being able to push a certain distance or being able to ride a bike, or you know walk is completely unattainable. It's my job to lead them through their options. And it's their decision to decide what they want, what they want to devote to it.

CG-C: That's really interesting, because it ties in with the previous conversation I've had with Zebrafish and I was talking to Steph, one of the people who set that off and been working in physio and pilates for years. And I asked them about myths around spinal cord injury rehab, and she said, one she thinks is this kind of assumption that someone, first of all would want to walk or needs to walk after an injury. And is that their goal? Not not necessarily saying they would or wouldn't want that. But is that coming from them? Or is that coming from their family, their partner, and how they feel they would fit in at a societal level?

PC: Absolutely. And then you find that the people that can walk are being judged completely differently again.

CG-C: Yeah, like, in my experience, I guess.

PC: Yeah. Well, wow you’re fixed!

CG-C: Yeah.

PC: Well, you know, I always have the saying that walking is overrated.

CG-C: Yeah. Well, we can I think in the context of spinal cord injury, I can see totally why that’s said because I think you've been in the survey where they asked paraplegics and quadriplegics it's way below things like pain, sexual function, bowel, bladder.

PC: Absolutely! You can get around. But there’s so many more important things to address. And they certainly, I sort of find there is a stigma that “Oh, you're just trying to get people that can't walk to walk again”, that Well, no, we do a lot more than that. And if walking is a goal for them, then we will point them in the steps they need to take to achieve it.

CG-C: Yeah, I mean, I can speak from that experience. And I came in, I guess, walking a little bit with my cane. And then that increased, but this service actually helped me in all, to first of all, identify the other areas that were so like, tunnel vision, and then how to navigate those, which was funny, because that's the coordinators role through the NDIS. But from coming to a service office, I was then able to access things like a better coordinator who was more informed, addressing the spasticity in my foot help with managing my bladder. And I was always curious, is that a common... Not necessarily common, but is it an experience you've seen morethan a couple of times?

PC: We do see it quite a lot in that and and it's it's the system is built for, oh, you have a disability, he'd go here, and it’s like well no, different types of disabilities that need different types of intervention. And you do need people that have experience in your industry so they can ask the hard questions because often, the hard questions haven't been asked, and you don't know what like you said, You don't know what help you can get until you, until you talk to people that have seen it. And yeah, that's what helps having a bit of a community around too where you can talk to other people that have had similar injuries and sort of explore with them and learn from what their storieshave been and what they're trying. Yeah. So that we can try to keep everyone informed. And you know, making that your choice not about the coordinators choice, not about the physio’s choice but the participants choice.

CG-C: And was this see, I, for me, this was like a totally different learning process coming in. But when you started the organization as a business, did it was that a learning process for you as well?

PC: Yeah, it was huge, because I always wanted it to be about the person trying to get that message across was very difficult for the first two years. It's been a lot more accepted now and that we can and I think the NDIS is, you know, a little bit more accepting of people's individual goals rather than, you know, you have this disability. So this should be your goal. I think there has been a shift at the moment whether that’ll stay, but it was, it was really hard trying to convince people to, you know, come on board, not clients, but other sort of therapy providers.

CG-C: Yeah. I think, again, that's another interesting connection, that the service actually helps people deal with a lot of psychosocial issues connected to movement and management, their disability, but I know from speaking to you previously, how is the business initially received by I guess more mainstream physio, medical?

PC: Yeah, no medical was really supportive. Yeah, mainstream other matrix services found it a little bit hard, because it was so different. And also they were lik why do you need to do that? Because no one's doing it there is, there is nowhere for someone in Newcastle spinal cord to go and do some rehab, and you can't, the push was oh well just do it in their home. Have you tried doing sit ups on an air mattress? It's almost impossible. They want to go and I love exercising. I used to do ultra marathons and all sorts of things like that, and I hate exercising at home. So how do I, why would I expect someone who's been through a life changing event who's just had their entire home changed and set up in a personal, you know, personal care to then suddenly want to exercise in that space?

CG-C: Isn’t that again, going into the idea of like, the person being stuck at home with a disability rather than accessing the community and services around? Being visible and active? So they kind of influence? I think that's a really interesting connection to movement to in that you might see as the people you work with, I guess, is when someone rediscovers some sort of movement, whatever it is, any type, rolling over in bed, moving their hands, standing a little bit longer, that that then can transfer into the sense of self and then how they might be able to act on a larger scale, whether it's in their community, in their family, with their partner. And yeah, just the idea of, okay, just exercise at home...

PC: Just stay at home, so no one can see you. We don't have to acknowledge that you are here. It’s just that message. Oh, well, it's good enough, isn't it? Yeah. So we don't expect anyone else to exercise at home on their bed.

CG-C: Do you think that the… I mean, the NDIS provides the funding, but do you think it's in services like this developing that have pushed the shift towards that more holistic understanding, as opposed to a more like, isolated? Okay, this is the problem. Let's deal with that. Here's the money for that isolated thing.

PC: Yeah, I think so. And I think I think we're now getting participants that are well educated, and they're pushing for it.The ones that are, you know, good at advocating for themselves, and then we're getting to the good corner support for the same results. Again, you know, this is something I need to advocate for, for my, for my participant. Which is a really important shift. Because we don’t want people sitting at home.

CG-C: Yeah, in my personal experience, I feel like break- connecting with this service, is what opened up, even starting to see that are starting to see people coming in who work as coordinators are talking to people.

PC: I would say acquiring a disability is like being sent to a foreign country with no language and no guide book. You kind of know that you’ve got to get around, but you've got no idea how to get anywhere or communicate with anyone. And you've just got to feel your way around. And what we need to do is try and make it so if you have an interpreter, and you have a guide, we're going okay well this is this is what you've got. Okay. Well, have you thought about this, this, this, and this? And can you go down this? Because it's, it's just so hard. I mean, you've had this huge injury, and they expect you just to go off and find your own way. Or find the mainstream medical way which may not be suitable for you.

CG-C: Yeah. I mean, for me, it was turning first of all, to the internet, which has all sorts of other problems. Because it ties in with what we spoke about with walking - well is that my goal?

PC: Yeah. And it's and it's pushed and pushed.

CG-C: Yeah. But we’re not going to go into that. Then, yeah, it's

PC: The mainstream media pushing certain opinions on people.

CG-C: Yeah. So interesting. In both that's the other thing that I think when there's a service available, but you don't know unless you come they can help educate you in that way. And then you have that experience. And I guess like the more people who talk about it within the community with disabilities, the more hope that that will spread.

PC: I think we just, everyone has to be having really honest discussions in the disability community about everything and not trying to hide things. People want to know. And we need to be educating the mainstream population that you don't ask someone, how they’re going with their walking, you ask them how their life is, and what's making them happy. And what they want to do because they’re people, they’re not legs.

CG-C: Yeah, it's Yeah. People always think of it like, Oh, you're a fitness fanatic now. And you're like, no, I'm interested in moving my body like.

PC: Interested in living. It’s a good thing to do.

CG-C: Yeah. Yes. standing for long enough, so I can work. That's like one of my main interests was the inclusive environment of Breaking Boundaries. And then so barrier in terms of accessing the information but then barrier in terms of getting home, and thinking about ok exercise, going to a gym, this is a new body, that could be pretty scary. How would I interact with the other people there? How will they view me and I just, again, I guess it comes down to people sharing information, getting people through the door, at least Breaking Boundaries is a different environment to the experience of a mainstream...

PC: I think it's just very inclusive, it's set up to make it easy, I think that as you walk through the door just the fact that you can just go straight in there's no stairs to navigate just sets people at ease straight away. And then when we come in, it is all about all about you. There's so many barriers for everyone to exercise, let alone someone with a disability, we have just tried to aim to knock down as many as we can. So that when you come in, you're comfortable and everyone just sort of knows you. And we, I guess with the physio training we have, we get pretty good at clueing into different people's, what motivates them. And it's, then create the space that they need to exercise in as opposed to what everyone else needs. COVID put a little bit of a dent in that. But we're now getting back to the you know, we know that Calum’s coming in, we know what sort of music he likes to have on. Yeah, he likes this. And you know, we do have some people that like to come in, when no one's here. And that's fine, too. So we get them in early or late and we change the music and you know, or even little things that can make such a difference to someone's confidence.

CG-C: Yeah. And then then I guess if you're educating or moving in that type of environment, then it might transfer into when you're doing things in your everyday life more. That was like a big, one of the problems, I guess, some of these places you hear about that more, I guess. US neuro rehabs where pay lots of money to go and exercise there. And then they go home and then they kind of switch off. Yeah, is that something does Breaking Boundaries kind of encourage people's, well, in my experience, it has been moving here, but then in a way that they're gonna kind of do at home or when you transfer out of your chair to the car or.

PC: And then focusing on those goals and really getting to know the person and what they're not doing and trying to open up. Give them options for that. So finding out Oh, you can't get in and out of your car. Okay, well, let's work on that. Oh, can you do you know how you can transfer from your bed to the chair? Well, that means you should be able to do your chair when you thought you can't. So let's work on that. When the person may not have thought that that was in the realms of possibility. Because why would you? You’re not trained in this. You're just trying to navigate your life. Yeah. And so it's about pointing out those things to them and encouraging, like you said, the movement at home and try and take a more holistic approach. And if we need to, you know, linking people with dieticians, yoga instructors and all that sort of stuff to look after their mindfulness and the nutrition and things like that. That's all really important.

CG-C: Yeah. In my experience, I find services I’ve related to the most have always been like encouraging this, I guess just raised level of awareness about your body, how it works for you, and how you can make it work for you.

PC: Exactly. And to try and keep that and so that you can get what you need out of that body.

CG-C: And then that's why I don't understand why when the standard protocol to come, I mean, I guess another route would be like peer services, but I couldn't find many of those in Newcastle.

PC: They’re definitely still being established. They’re complicated, because you're getting a group of people together that doesn't necessarily always work out. It’s very variable depending on who’s available and when.

CG-C: And also strange getting people of different personalities, like oh they all use wheelchairs.

PC: Yeah, exactly so you must all be friends!

CG-C: So you guys deal with a whole host of disabilities here, right?

PC: Yep, everything from cerebral palsy to rare neurological conditions to spinal cord, to MS. And then we get the occasional mainstream people that come in as well.

CG-C: Yeah, I actually bumped into someone at the beach baths yesterday and they were like hey! You go to the physio! And then also some really young kids too..

PC: Yep, we’ve got some littlies that come through.

CG-C: How do they, is it the families that find out about the service like this?

PC: Yes, some of the doctors have referred them. And when they've got someone that's a little bit out the box we often get them to come here. Some of the doctors recognized that some some conditions and some individuals really need that patient, patient focused approach. And accept that we will spend that time with them and the family. Yeah, because it's quite unique as well, because depending on the person, the family can be as important as the client, depending on what the relationships are like and the role. Yeah, and it makes the people that are here at the same time, self reflect a little bit, which is always positive. Yeah. And that they can be other people, which is nice, because you know, we all like to help others. It's nice to think that even if you are in a wheelchair, or you're not walking as well as you could you can still be a source motivation or source of help or some advice to people around you.

CG-C: Yeah. And that's the big part about inclusion, I guess, in the hope, I would imagine something like the National Disability Insurance Scheme would be to get more people involved participants so that it can become more geared towards sharing information and being but I guess it's such a large spectrum, isn't it? So it's challenging.

PC: Everything has its challenges though, and we just have to not accept them. We have to keep pushing at them. I'd like to think that we don’t look at people with disability we just sort of have oh those people require a little bit of extra funding for their daily lives and because their life doesn't need it, rather than perhaps looking at oh, that person has this disability. They just need a little bit more help. Yeah. And that's perfectly reasonable. Some of us do. And some of us don’t and that’s life. Instead of going, Oh, well, this person has a disability, therefore, they must live like this.Because that’s not true at all.

CG-C: Yeah. I mean, and we're so privileged to have access for someone to even consider giving funding compared to some of my friends in the US.

PC: correct or be talking to some of the spinal cord clients who have had it for years and what it used to be like.

CG-C: Do you have any kind of stories?

PC: I didn't work in the industry then. So they're only anecdotal stories that I've heard but I've definitely heard that it was very common practice for people to have to have to admit themselves to hospital for many weeks of the year because they didn't have enough care hours to go around. And funding for wheelchairs was always problematic. So you couldn't get in you could have a serious problem with your wheelchair beginning pressure area for it. But if you couldn't afford the 15 or $20,000 to get it fixed well then it didn’t get fixed, or you had to go and apply funding grants which took months or you’d have to admit yourself to hospital to save money in your care package, so that that could then pay for a wheelchair, when it's pretty pretty disgusting stuff. When you think about it that we're forcing, you know, some of these, quite a lot of these people have jobs and their families and yet they had to try and get themselves admitted to hospital with colds and things just to try and save money on care.

CG-C: Was that so things like if you ran out of sanitary products like catheters.

PC: Catheters were generally re-used, people trying to sterilize themselves. It's just disgusting what you think about it, but that's what people had to do to get by. Yeah, because there wasn't always some people were lucky and seemed to get the funding, but plenty of people didn't. And no one would talk about it because no one wants to talk about it.

CG-C: Do you think that’s because it’s a bit taboo? Or some shame connected to...

PC: Yeah, I think it still is. We still see clients that come through, and they've had injuries and they haven't been well managed, and I think it’s like oh well they’re probably going to die so who cares?

But they’ve survived. They're alive. But they've got problems because they weren't looked after by health systems as well as they could have been.

CG-C: Yeah, I guess that’s the incardinate of accessing a service like this, as well is then you build a relationship with someone to the point where might share something that you haven't shared, even if it is just working with your trainer, and you work with them for a few months. And then, hey, this is actually bothering me and then that is something that you guys look at helping them to address. But I'm always interested in, why is it that people or I guess people are coming here for a holistic thing but that’s not really how it’s charged through their plan?

PC: Yes.

CG-C: So why is it that you guys are doing often, well I can only really speak from my experience, often a lot of the work that someone in the coordination role is getting that funding out of the plan isn’t doing?

PC: Yes, I guess it's just about being about the person and they’re a person, rather than about just oh our role is just do the physio we, I guess we know what we don't know and we’re happy to refer on and go I’ve got an idea how to do that. But I think you need to go see someone to get it done. Maybe it's an OT, I think it's the care. You know, it's you when we have that connection with our clients, that we really care about them. And if it means we have to spend half an hour after their session researching something so that they can go off and get the best access. Well, then that's great. And then the next time we have someone come in, we’ll know it off the top of our heads. Investing in people, you never lose out.

CG-C: Do you think that's where the disconnect is then maybe? Was there a big branch of pop up services around 2013, 14 in Newcastle?

PC: I think there was a lot of community therapy starting, but I think what you've identified is that distinction is that people need more than just someone coming to their house more than a few hours a week. There was an increase in that, but not not the increase that I would have thought there would have been,. We're still fairly unique service in the area. There's lots of pediatric services, but we're still fairly unique. And it surprises me that no one else is sort of doing similar.

CG-C: Yeah when I’ve spoken to people about it even with some other issues in relation to their coordination or whatever I go you should check out this place or go to physio and they go I’ve never heard of that. Or like a lot of people who work in support work in disabilities and they don’t know. The big organisations don’t know.

PC: A lot of them do like to have their own little bases already set up and they’re not always looking outside the box.

CG-C: Okay, do you think that maybe it's people's maybe time to take a bit of a step back? Because there has been so much change in that six years?

PC: Absolutely. To have a look at what's outside. And to not just, like if you’re in a big organization it's very easy. They'll often have their own physios and OTs, and they're not always the right physios and OTs for the person, but they get referred to them anyway. I think that's one thing that we do well too. Sometimes we do have people that are better off seeing someone that has a special interest and we tell them, I'll go see this, you know, this physio that’s also an OT. And they’re really good at making really complicated splints. And it's, it's having that awareness. Yeah. But people have to be willing to do that of course.

CG-C: We've spoken about, like, I guess a lot of the positive sides and negative sides of not having access to a service like this, if it was standard practice, you know, how it's kind of like standard practice. When you leave, for instance, whatever rehab, you're in, you get referred to the health service. If it was standard practice to start to get referred to services like this, what would you think that would start to look like?

PC: Yeah, I think that there should be the referral. There should always be the referral for the public service, the service that's there and then they should also be given two or three private options. But given information on this first this has this approach and this approach, and this is this approach because we’re not right for everyone, some people just want to come home and you know, get involved with a certain, you know, and perhaps not push their rehab for a while and that's fine, but we might be right for them in six months time.And but it's educating providing that choice, whereas at the moment, I don't think, the choice just isn’t provided.

CG-C: Yeah, I think that's the most interesting point about having been so fortunate in my experience to have something like the NDIS to help me in the first place, then the disconnect wasn't so much not then not having the funding but rather knowing what to do with it.

PC: And how to best use it.

CG-C: So it's like, you have the freedom of choice but if you don't know what choices to make.

PC: It’s pointless.

CG-C: Yeah, yeah. How do you think you would go about building, I guess, is there something? Are you guys aware of building that awareness as well? Or do you hope that that would kind of come on with the community itself?

PC: A bit of both. We've certainly been working really hard on building the awareness back with the mainstream rehab services, and that's working quite well. And it's just sort of breaking down that barrier of the traditional Oh, you've had this so you then get referred to this public system. That may or may not, it’s just breaking down the barriers.You know, guys there are these alternative options out there. So start having these discussions with clients before you send them home, so that they know what their options are in the local community, I think there needs to be a real push through there, which I know it's hard if they're rehabs in Sydney, and then moving back to Newcastle. But it's also a common thing that's happening. So there should be a list of that mid group that you're talking about when you're getting out of hospital or getting out of rehab, to go into access private services, there is no information. And even if your physio had, say Ryde, rehab has told you about us. It's also happening in a time when you've got so much else happening that you might not necessarily remember. What we find is often people, you know, talk to someone else and go, Oh, that's right. I was supposed to go there when I got home but there’s not necessarily a direct directive, especially the NDIS we find that people that are funded by other bodies, and a lot more directed. Because they often have coordinators in place before they leave rehab. And they'll be like, Oh, no, and they say, this is where I want to go, then that coordinator will do that because the coordinator is already already getting funded. And those lines of communication are slightly more established.

CG-C: What’s the other ones?

PC: So you can have lifetime care, which is when you've been injured in a car accident, generally and you've had a serious injury, like a spinal injury or head injury. And then sometimes there's some other ones like there’s obviously, worker's comp is still an issue, some people do get injured at work. And then of course, there's just your third party, although they're not so serious injuries.

CG-C: Right. And then they would, they would access someone else to kind of do the coordination role, that would be through the NDIS.

PC: And I guess it's because they need pre approval to come to therapy. So they have to be on the front. It's got its own benefits, like benefit is, because when they leave, they know they have to have the next step already pre approved. So the steps have already been made for them. Whereas when they have NDIS, they know they've got physio funding, they just don't know who so they don't perhaps make that effort to go. Whereas the pre approval has to be for a certain place. So they will put the steps in to say go to this place, or let's investigate these options while you're in rehab. So that you can pick so when you go home, they'll be that seamless transfer whereas I think the one problem with the NDIS is they just go oh go home and find a physio. Which isn’t...

CG-C: That kind of seems to be the shortfall in my experience with like, person-centered approach not saying is treating people's individual is key, is really important. But leaving the position in which they're forced to act independently is different.

PC: People still need guidance. Because it's new. And they don't know what makes, just because you have spinal cord injury does not make you an expert in neurological physiotherapy or being able to pick physiotherapies that are adequate and we do we often see people down the track that have said oh I’ve wasted years doing something that perhaps wasn’t ideal, and like you said they didn’t know any better.

Just because you’ve had a spinal cord injury does not make you an expert in spinal cord injuries and not everyone wants to sit on the internet researching their condition. Some people like to pretend it does exist and don't look into it at all and other people throw themselves into it head on and want to know everything about it. And you have to expect that there’s those two different types of people and everything in between.

Yeah, I think well for me, it took me a little while to put the pieces together. Why isn’t everyone like this? And you’re like obviously they’re not. Before we make So is there a connection? I know that I'm Making Strides, for example was important. I could be wrong but was imported from the Project Walk model in the US? Yeah. And then transferred over into Australia. And then were you were you at all? I guess it was your connection with Alex and setting up here, were you looking at something quite different or trying to get inspiration from that model?

PC: Well Making Strides is fantastic. They were my first introduction into spinal how to rehab the spinal cord injury, which of course is so different to have the mainstream physiotherapy in the hospital rehabs. Yeah, I'm not saying 100% better than the other. But both have their benefits and are good for different people. I mean, the best, of course, is to combine the two. So that's what I sort of thought to do is go well, this is what the traditional, I really don't like the fact that the traditional is that you have this injury and therefore your life is going to look like this because I like that approach from making strides, which is very much about exploring what that person can do and working with it and working on lots of different strategies and lots of different neuro dynamics, and it's really quite exciting. But it's also a lot of hard work so it’s finding a mesh between the two. Yeah, I think that’s something we do really well.

CG-C: Yeah, I've heard that that's, I'm not so sure. I haven't heard of it so much in Australia. But in the US a lot of people start off in that profession in neurological rehab and get burnt out quite quickly. Is that something you’ve encountered?

PC: Um… I guess we haven’t been around long enough just yet but it’s something we definitely have to watch out for. And there's the physical side of things as well. Some of the stuff they do at Making Strides is incredible, it's quite physical. And then you do spend so much time with people, you've got to be really careful with your therapist to make sure they can maintain that quality of care and that professionalism but then also be a switch off from when they get home as well, which is, it's going to be interesting, right to make sure people I guess it’s self care for everyone whether you’re injured or not. Just trying too stop burnout… no one wants to leave a job they love.

CG-C: No, but I guess on the flip side which would be the opposite of burnout would be encouragement from seeing people take a new, even if it’s not necessarily a measurable, I mean there would be a measurable gain,some sort of new like perspective on autonomy and their relationship to their life which you must see all the time.

PC: Absolutely. I mean, people make their own choices and that we are just here to help. We’re not here to rule their lives, we’re here to help.

CG-C: Yeah, just guide and educate I guess.

PC: Yes. It’s not our job to dictate that like you said, we’re here to guide.

CG-C: Yeah, I mean, I, I really admire that about a service like this. Like, when maybe that's just a thing that you have when you're in your first couple years of spinal and you think if I spoke to someone like this I have to tell them to do this and help them with this and really being able to be like, maybe I just mention that in passing and take a step back and hope that they find their way there.

PC: Yeah, and let them make the decisions. And that helps I think. We all make our own decisions in life, and we can’t just model polly everyone.

CG-C: If you’re still hungry for more information after listening to this episode, head back to litmus dot media forward slash news, you’ll find articles, past episodes and writing that I find super interesting and want to share with you.

If you enjoyed this episode of Divergent, please subscribe, rate and leave a review. Until next time, I’m Calum Glendinning Clark and you’ve been listening to Divergent.