00:00:45
S1: Hello and welcome to In Plain Sight, a program where we highlight people who are making a positive impact in the community and disability sector.
00:00:53
S2: Shining a light on those who would be otherwise hidden in plain sight.
00:00:57
S1: And it's a pleasure to bring you these stories on a weekly basis with you here on Vision Australia Radio.
00:01:03
S2: Hello, Andrew.
00:01:04
S1: How are you? Simon.
00:01:05
S2: Excellent. Always, as I say each week. Always great to be here and always great to be with you listening out there. And, um, it's always such a pleasure to bring this program to the listeners. Andrew.
00:01:15
S1: It is. Yeah, it's quite a privilege we have making this program each week. The extraordinary range of people we get to speak to. It's very exciting.
00:01:22
S2: It is exciting, and it's also a great learning experience. Not only do I learn a lot from the conversations that I have with these fabulous guests each week, but I learn a lot through the research that I do for this program, and I learn a lot from the people listening who bring me feedback and information as they go. So this week we are talking about brain injury and brain injury awareness. Now, Andrew, we talked to someone from synapse, Australia. Andrew, you've got some information there from synapse website about the occurrence of acquired brain injury and some of the facts and figures around brain injury. Yes.
00:01:58
S1: Our guest is Adam Schickerling who's the CEO of synapse. And yeah, some interesting facts and figures about brain injury. About 1 in 45 Australians actually live with a brain injury, which represents something like over 450,000 Australians that actually live with a brain injury. And almost 3 in 4 people with a brain injury are under 65. Another interesting fact is more men than women actually have brain injuries. There's all kinds of facts and figures here, but there's every four minutes someone in Australia is hospitalised with a head injury and the causes of brain injury. Most brain injuries are caused. About 39% are caused from falls. About 31% from motor vehicle accidents and cycling accidents and assaults, which is a really interesting figure to think about. And Adam talks about this in the interview. Roughly 12% of brain injuries come from assaults, which is a very sobering thought.
00:03:03
S2: Sobering, a good term to use there, Andrew. If we look at the facts there and the figures there, that so many men of a certain age do acquire a brain injury, and if we all know the some of the dangerous and reckless behaviour that men of a certain age youth get up to, not only can they do something dangerous and hurt themselves, but get in a situation where they might be hurt by somebody else. As we will discover when we talk to Adam, the result of a brain injury. There is, as we like to say, a spectrum of symptoms, if you like, or physical signs of what might look like a brain injury. And we will go through some of that as we listen to our conversation with Adam. But part of what we are doing here is to highlight that one. Your brain is a precious, very delicate object. And please look after your head and the brain inside. And please take care of yourself and others. And as we listen to this conversation with Adam, be aware of you might know someone that has an acquired brain injury that might not even know it themselves. So if you see signs or symptoms that may appear to be effects from a brain injury, look into it. Ask your doctor, ask somebody and contact a support organization like synapse to find out if your friend or your family member has a brain injury and what we can do about it. And that's the kind of things we're going to learn by this conversation.
00:04:33
S1: And just before we do that, it's probably worth mentioning the synapse website as well, which people can go to to find out all kinds of resources. So it's synapse SYNAPSE synapse.org.au.
00:04:47
S2: And just to let people know, to synapse have a bunch of peer support groups across the country. And the support group here in West Australia is called Reconnections. Look out for that and contact synapse and contact us here at Vision Australia Radio at In Plain Sight at Vision australia.org to find out the further details about those support groups in synapse.
00:05:10
S1: And here's your interview with Adam.
00:05:13
S2: Hello, Adam.
00:05:14
S3: Hello. Thanks for having me.
00:05:16
S2: Adam. I'll get you to start by telling us a little bit about what synapse is and what their aims are.
00:05:22
S3: Sure. So synapse is the only national brain injury organisation that is working directly with people that are impacted by brain injury across the country. So we do a range of things, but really, I guess our overall focus is about improving awareness and understanding of brain injury, how it comes about, the impacts of brain injury on people's lives, and really, I guess, a strong focus on trying to help services in all parts of community respond better to the impact of brain injury on someone's life. Mhm. So that they can do all the things that all of us take for granted.
00:06:02
S2: Um, just to cover the bases. Give us some examples of what brain injury is. We kind of know if you get hit in the head, you get a brain injury. And for those of us that, like me, are sports fans, we're all well aware of concussion in sports and things that can lead to long term brain injury and so forth.
00:06:18
S3: It can be so many different things, which is one of the real challenges with brain injury and with awareness of brain injury, particularly because it's invisible. So the sort of impact of brain injury, unless someone is, uh, has an injury and is bleeding and has a, you know, visible injury. Nobody knows that anything is going on. So, um, brain injury itself can be caused by lots of different things. Most people tend to know most about things like traumatic brain injury. Um, which is the term we use to speak, you know, largely or generally I guess about um physical, um, interference or disruption to the brain, um, things like concussion, like you mentioned, uh, things that people are becoming much more aware of, uh, concussion. Often you might hear people refer to concussion as a mild TBI. Um, but also things like in, say, older populations, uh, things like stroke, um, the, the impact of, of stroke, um, being, being what we talk about with brain injury, other degenerative conditions. Another area of brain injury that that many people don't know a lot about is what we sometimes can refer to as hypoxic brain injuries, which is often where oxygen has been limited in getting to the brain. So we can see that often through things like violence and strangulation, sometimes in people that do a lot of diving, um, you know, a lot of those types of things. But also you've got, you know, I guess something that's particularly prevalent in discussions at the moment, um, a lot of brain injury being sustained, uh, as a result of repeated blows to the head. Concussion obviously is the obvious thing we talk about. A lot of people have become a lot more aware of things like CTE as the result of concussion, um, being diagnosed later in life. But often what people, uh, don't necessarily understand is it's that same sort of impact that happens in often women that are the victims of domestic violence, where repeated blows to the head, perhaps strangulation, where oxygen to the brain is being limited. Um, so those types of impacts, while we know about them in sport can be quite common across other areas as well.
00:08:37
S2: I think on your web page, there was a whole section about violence and domestic violence.
00:08:43
S3: Yeah, that would be right. It's certainly a really quite a significant focus for us at the moment, particularly probably one of the key, uh, things that we talk about often in relation to domestic violence is that one of the real challenges most people know that many people that are subject to violence in that way often will really struggle to report it to the police or to go and get medical help for a whole range of different reasons. And as you can imagine, if someone has sustained an injury to their brain as a result of that violence, if they're not talking to people or getting help, that injury goes unnoticed. So the impact of that injury can continue to get worse the more that those situations occur. Um, and all the while the person may not get any medical help at all, which is quite different to a scenario of someone that might acquire a brain injury, for example, through a car accident or a sporting accident, where the immediate response is to see a medical professional get advice on what sort of impact has happened. You know, how to best support recovery from that impact. All these things that we can do to try to minimize the impact of injury to the brain in someone that might be, uh, subjected to violence. Often they don't have those opportunities.
00:10:01
S2: Adam, you're the CEO. Can you tell us firstly, how long you've been there and what brought you to that organization?
00:10:09
S3: Yeah. So I've been the CEO at synapse more recently and worked for synapse for about ten years now. Okay. And I guess most of my background is in the area of disability, but, but particularly, I guess my interest in brain injury is really understanding, probably the intersection between injury and the sort of barriers that people face in their lives that are not different for someone with a brain injury to everyone else, but they are amplified. And, and that's a really, I think we see often when working with people with brain injury, that there are so many people that are impacted by brain injury in so many different ways, but often they're not identified. So very often people may be impacted by brain injury and not know they actually have a brain injury. And in those cases, we'll, you know, we often see a lot of people that are impacted by brain injury in areas like incarceration, children that might be in out of home care having been removed from their families. Um, we see a lot of people with brain injury in the homelessness sector, um, where these things aren't, aren't identified or often they may be misunderstood or assumed to be mental health issues rather than an actual problem with the brain.
00:11:29
S2: You mentioned that synapse is an Australia wide a national organisation.
00:11:34
S3: Yeah. So synapse as it is today is a national organisation, is the combination of a number of brain injury organisations that have come together over the years. So both in Queensland um was Brain Injury Association of Queensland, the Brain Injury Association of New South Wales, the Stroke Association of Queensland and also head west in WA. So synapse today is really the product of all of those organisations coming together to try to, I guess, really amplify the voice and the advocacy around brain injury nationally, because it's something that just doesn't happen enough. We know the prevalence is significant and growing.
00:12:15
S2: So synapse is um, both an advocacy organisation and a service provider. Is that right?
00:12:21
S3: We are. Yeah. That's right. Our national focus really is about getting information out across communities about brain injury and what it is and how it impacts people. Mhm. That's really the core of what we do. But at the same time, we deliver specific services to individuals with brain injury and families and organizations, um, in different places across the country. Uh, we also do or have involvement in quite a lot of different research activities, um, from younger age to older age, um, all different, I guess, scenarios of how brain injuries might be acquired or the sort of supports people might need. So research is a really important part of us being able to get information out to community that is evidence based.
00:13:09
S2: I noticed researching some of the services that are available here in Western Australia. The first kind of things you see are hospital based rehab type services. I'm assuming that synapse doesn't do that type of thing. It's after you've had your medical rehabilitation and recovery. Would that be right?
00:13:28
S3: Generally speaking, yeah, that would be correct. I think most of the work that we do is at the end of the or not the end of the pathway, often the start of the pathway for people once they leave rehab and go back home. And normally what we tend to find is often people when they get an injury and they're in hospital or in a rehab unit, they have access to lots of different people helping them, lots of therapies, lots of supports in place. And often it's when people first get home that they then realize the gravity of the changes that have happened in their lives, and that everyday things that they perhaps didn't realize they might not be able to do as well, or it might be harder. And so often we find that people are period of time after they get home from rehab is normally when they reach out to us because they're starting to find things difficult. And there's just frequently not the available services for people to draw on. And often the mainstream services, even if that might be, you know, GPS or, you know, whatever it may be in a local community, often they also really lack current knowledge about brain injury and what that means for someone. So we really do a lot of work, or we try our best to do a lot of work to try to get people connected to both information and services as best we can. Um, and at the same time trying to build awareness of those services so they can actually support people better.
00:14:59
S1: On Vision Australia radio, you're listening to In Plain Sight with Simon Chong and me, Andrew Williams. Our guest this week is Adam Schickerling, who is the CEO of synapse, which is Australia's peak organisation, providing a range of support services and advocacy for people who've been impacted by brain injury and disability. And now it's back to Simon and Adam.
00:15:20
S2: Talking about awareness during August. We have Brain Injury Awareness Week, which has just been recently. Tell us some of the main aims of that. I remember that the overall theme was many pathways, one community or something along those lines.
00:15:35
S3: Yeah, yeah, that's that theme for this year is correct. And I guess really the focus of that theme and why we're talking so much about that. Um, as well as other brain injury organisations across the country is really very much raising that awareness for people that while brain injury is a diagnosis, a particular diagnosis, many people are not diagnosed, you know, so that's one important point. But the other important point is even those that do have a diagnosis, what brain injury looks like for them is entirely different to the person next to them. So we know with brain injury that the sort of injury or the impacts of an injury that someone will recognize will be completely different based on what part of the brain has been damaged, how severely that part of the brain has been damaged. All of those things will determine what sort of functions in our body will be impacted, whether it's our cognition and how we think and feel, whether it's how we move, whether it's our vision or our hearing. You know, all of these things are controlled by our brain. And so the type of injury really impacts what the result of a brain injury is for someone. So this year's theme is really very much about highlighting that that experience is different for everybody. There's then a really a secondary layer that's important in that depending on where we come from, our cultural background, what access to financial resources we have, where we live, how easily we can access services. All of these things will then also impact how well we can manage the impact of that brain injury. So this year's theme is really about recognizing that every brain injury is different, every person is different, every story is different. And we really do this work every year just to try to really raise awareness of that across communities, particularly when we're talking about something like brain injury that people can't visibly see.
00:17:35
S4: Tell us about.
00:17:36
S2: Some of the services that you provide there.
00:17:40
S3: Yeah. So we do a variety of things. We generally don't do, uh, clinical type services. So we provide a lot of support into people's homes in some parts of the country. Uh, and so in some cases, it might be where someone are connected with the NDIS. In other cases, it might be people that, for example, might have had, uh, motor vehicle accidents and the insurers in each state, um, that are providing support for the individual. Um, so we do some work in the area of that direct support. We also in some areas deliver housing for people where that might be part of the challenge that they're facing. We do some work as an organization particularly, or a very strong focus of our organization is working with Aboriginal and Torres Strait Islander communities. And in that area, we do a lot of training and information for communities and organizations, as well as screening for brain injury in different settings. So that's an important part. We also, on a national level, we have a call centre that people can reach out to us to ask questions about brain injury, to access information about different things they might be going through. We run a series of different sorts of peer groups across the country in different locations that we try to link people into. And we also have some areas, particularly in New South Wales, where we deliver a lot of individual advocacy where people can come to us, where they have a really specific issue that they need some help to navigate, whether that's around their housing or access to services or whatever it may be. And we can provide individual advocates that can help people work through those issues with a with a really good understanding of the impact of brain injury on the sort of issues the person is facing.
00:19:34
S2: So in regards to advocacy, Synapse in New South Wales has individual advocacy. But in general you focus on systemic advocacy. Is that right?
00:19:42
S3: Absolutely, yes. It's a very, very strong focus for us, and mainly because, as I mentioned earlier, that we know that there is a lot of people with brain injury across the country that are not able to access the right services and supports like everybody else, you know, and, and there's also a lot of people that we know, have or are impacted by brain injury, but might not be receiving funded services from the government, you know, or they might not even know that they have a brain injury. So often we see a lot of people that can be really disadvantaged, both financially and socially. You know, things after brain injury can become a lot harder, a lot more overwhelming. You know, some of the impacts of of brain injury, they can be so far reaching from a sort of physical disability, but through to, you know, people that might really struggle with memory, you know, remembering pieces of information after a short period of time. Or, um, it might be about regulating their emotions and, you know, getting upset and not being able to calm down as well. You know, we see probably around about 60%, some of the evidence says of people with brain injury that also develop a mental health condition. Alongside that, often due to the the impact of feeling isolated and alone after injury. You know, so there's so many different things that impact people with a brain injury. And it's really the importance of that theme this year, being every brain injury is different. It really helps us recognize people with brain injury are just like you and I. We're all the same. Um, there's just some additional challenges on top of that. You know, so we've got to really recognize that people with brain injury are struggling with mental health. People with brain injury are struggling with often with, with housing or with relationships in the family and, you know, a whole range of different things in life.
00:21:40
S2: So, Adam, you were just talking about the isolation and loneliness and mental health challenges of people who have an acquired brain injury. I believe you have some support groups connect up groups, coffee groups or something along those lines in different locations.
00:21:54
S3: We do. Yes, it's a I, I think we find it's a really critical part of the work we do is not only getting information out to people impacted by injury and communities, but it's connecting people with brain injury and families and carers of people with brain injury together, because the most powerful learning, often for people, is hearing and understanding the story of someone else that has been through similar things. And that's a really important part. So we have a whole series of groups that run across the country in different locations for people to catch up, sometimes social activities, sometimes it's more about information and learning that people want to do. Um, so it can be for a whole range of reasons. And I guess importantly with that, it's really very much driven by people in community themselves approaching us. And then we try to help them put things in place for, for those groups to be facilitated so that it's people running those groups themselves, but having us as a resource to assist them to do it. But we do also run a series of online groups for people that might not be able to get out and about as easily. So it's really about just providing that opportunity for people to connect with each other, debrief a bit, share a bit about the challenges going on for them in life.
00:23:15
S2: Just remind us what those groups are called, please, Adam.
00:23:18
S3: So some of those, the in-person groups are called reconnections groups.
00:23:23
S2: I like that.
00:23:24
S3: And there's lots of links on our website and that sort of thing. If anyone wants to reach out about those.
00:23:29
S2: We are broadcasting from the Perth studios of Vision Australia, and I believe that your office is in Cloverdale or Belmont, and those reconnection groups are held in the Belmont Hub. I looked that up online, if you can, and you can find those, and I will share those details on the podcast description and show notes. Can you tell us, Adam, how does one get connected with an organisation like yours?
00:23:52
S3: Yeah. So it can be various different ways. I think we often find that when people sustain an injury, um, and they end up in a hospital or getting, uh, medical support and maybe going through rehab. Often the hospital or the rehab unit will try to provide people with information about sign ups, uh, as they leave the service so that that contact point is there. Certainly people can find us online and all those types of things. Um, but increasingly, I guess we tend to also connect with people in the work we do out in communities and getting out and talking to different groups around the country. Um, that tends to be the way we connect with a lot of people, but, um, we have a whole range of information, of course on our website, but often people just really want to talk to someone, you know, and so that's a really important part of what we do.
00:24:48
S2: Whilst the NDIS is an important and valuable scheme, it is quite controversial right at the moment. Can you tell us like someone's had a car accident or a workplace accident, whatever it might be, what gets looked at first because obviously sometimes the obvious thing is, oh, look, their arm or their legs are smashed up and they need physical rehab for that kind of thing. And the brain injury might not be as noticeable. How is that addressed within an organization like yourself?
00:25:15
S3: Yeah, again, that's a really interesting question because one of the things we often talk to families about this, that often what we tend to find is a lot of people that may have sustained an injury and been through maybe a hospital or whatever it may be. Often it's the family members that will identify changes in their family member when they get back home. So it becomes a really important part of families being able to have a bit of an idea of what to look for and if they're noticing changes. And that could be something like one of the examples we often often use when we talk about brain injury is the example of, say, an older person that has dementia. Yes. Because it's something most of us can really relate to easily. Having someone in our own families and what you what we all notice in someone with dementia often is that maybe their personality changes. You know, the way they talk, the way they engage might be a little bit different to what it used to be. Maybe they might start recognizing who you are visually, but they can't remember your name. You know, maybe they're forgetting to do little bits and pieces of things that they've been able to do for 50 years prior to that, you know, or sometimes we, we see quite often, maybe the person is, is getting a lot angrier than they used to. You know, they find it a little bit harder to manage their emotions. You know, all of these things that we see in things like dementia is what brain injury does. Um, depending on the part of the brain that that's impacted, of course, but it's a really good example for, for people to think about And the reason I use that is going to your question, that often the only people that can really see those changes is family. Um, so we can go off to, um, a specialist or a medical provider to, uh, you know, have scans and assessments to try to assess certain things. But often, um, knowing the change, um, is something that really comes from families.
00:27:22
S2: Because often people might be confused for being intoxicated or mentally ill or, or having dementia even.
00:27:30
S3: Yeah, absolutely. And, and things like dementia is a great example. The impact, you know, the long term impact of dementia. It is a brain injury. It's that that's the impact. So, you know, often we hear quite frequently from people that are, um, perhaps been engaged with the police and where they've been perhaps pulled up by the police with an assumption that they're intoxicated, where they actually have a diagnosed brain injury and in their speech is impacted or their gait, which is something that's quite frequent as well. The way that they walk might be impacted. So people make this whole range of assumptions because they can't see physical signs of a disability. So they make assumptions about what explains someone's behavior. And that can be really very problematic for someone with a brain injury, where sometimes it's very hard for them to express, or sometimes they might not even perceive that there is a problem, you know? So it can be really difficult for people to, to understand that. And I think the other thing, which is, you know, a really critical part of brain injury is that someone understanding that they have a brain injury and what part of their brain is impacted is really important to then understand how we can help them or how we can support them better. Because if, for example, as you mentioned, someone has an injury to the front part of their brain, the frontal lobe. That's the part of the brain that that does a lot of things. But one thing it does is it helps control or regulate, um, how we manage our emotions. So often someone that has injury to the front of their brain might really struggle, um, being able to manage how, how they're responding to things emotionally, they might get upset really quickly or get really abrupt and those types of things. And other people might perceive that as someone being rude or unhappy. Um, whereas in reality that part of the brain that function in the brain is impaired because of the injury. And so you can see how that can really impact, for example, you know, maybe, um, a lot of people that that might have a frontal lobe injury where those types of impacts are evident. Maybe it's harder to maintain their relationships. Yes. Because people might get a bit upset with them and think, I don't want to be around you because you're always angry with me or, you know, you're not listening to me or those types of things without recognizing that that's, that's how the brain is working at that time. Um, and it doesn't mean that people can't find ways to manage that, but they need support from those around them to understand them and help them.
00:30:13
S2: I wanted to ask you, um, on a practical note in regards to identifying themselves of having a brain injury, an Abi or whatever it might be. Do people have some kind of identifier? Do they have a card? I know people, some people with autism or learning disability and the like might have a card that they can carry. So for instance, if there is interaction with the police or ambulance or whatever, they pull out this card and say, I'm not intoxicated. I look, I have a brain injury or in the case of invisible disabilities, have sunflower. Are there anything like that for people with an acquired brain injury?
00:30:46
S3: So there's some work that a Brain Injury Association of Tasmania has done in that area. It's not something that synapse generally does only because I guess we work with so many people. Um, and it's increasingly a part of our focus, people that don't know that the reason things are happening for them is a brain injury. Um, and, and so, so often it's really about services, understanding and organizations and government and police and all sorts of all parts of community understanding the impact of brain injury and what to look for because so often, uh, people won't have that diagnosis.
00:31:27
S2: We have to finish now. Adam, is there anything you'd like to leave us with before we have to say goodbye?
00:31:30
S3: I think just thank you for the opportunity to have a talk about brain injury. I think in the work we do, there's nothing more important than building awareness about what brain injury is and how it impacts people's lives. So, um, it's a great opportunity to share that.
00:31:45
S2: Thank you very much, Adam from synapse, Australia. And I really appreciate your time and your great input and insights into brain injury and brain injury awareness. Thanks for joining us here on Vision Australia Radio.
00:31:57
S3: Thank you.
00:31:58
S2: That's all we have time for this week, folks. Thanks for joining us once again and look forward to speaking to you next time. And bye for now. Cheers.
00:32:16
S1: That concludes in Plain sight for this week. Join us at the same time next week on Vision Australia Radio. VA Radio Digital and online at VA radio.org. You can also listen on demand by searching for In Plain Sight by Vision Australia Radio. Wherever you get your podcasts, or ask your smart device to play in Plain Sight by Vision Australia Radio. Thanks for listening.
00:32:40
S2: Thank you.
S1: Hello and welcome to In Plain Sight, a program where we highlight people who are making a positive impact in the community and disability sector.
00:00:53
S2: Shining a light on those who would be otherwise hidden in plain sight.
00:00:57
S1: And it's a pleasure to bring you these stories on a weekly basis with you here on Vision Australia Radio.
00:01:03
S2: Hello, Andrew.
00:01:04
S1: How are you? Simon.
00:01:05
S2: Excellent. Always, as I say each week. Always great to be here and always great to be with you listening out there. And, um, it's always such a pleasure to bring this program to the listeners. Andrew.
00:01:15
S1: It is. Yeah, it's quite a privilege we have making this program each week. The extraordinary range of people we get to speak to. It's very exciting.
00:01:22
S2: It is exciting, and it's also a great learning experience. Not only do I learn a lot from the conversations that I have with these fabulous guests each week, but I learn a lot through the research that I do for this program, and I learn a lot from the people listening who bring me feedback and information as they go. So this week we are talking about brain injury and brain injury awareness. Now, Andrew, we talked to someone from synapse, Australia. Andrew, you've got some information there from synapse website about the occurrence of acquired brain injury and some of the facts and figures around brain injury. Yes.
00:01:58
S1: Our guest is Adam Schickerling who's the CEO of synapse. And yeah, some interesting facts and figures about brain injury. About 1 in 45 Australians actually live with a brain injury, which represents something like over 450,000 Australians that actually live with a brain injury. And almost 3 in 4 people with a brain injury are under 65. Another interesting fact is more men than women actually have brain injuries. There's all kinds of facts and figures here, but there's every four minutes someone in Australia is hospitalised with a head injury and the causes of brain injury. Most brain injuries are caused. About 39% are caused from falls. About 31% from motor vehicle accidents and cycling accidents and assaults, which is a really interesting figure to think about. And Adam talks about this in the interview. Roughly 12% of brain injuries come from assaults, which is a very sobering thought.
00:03:03
S2: Sobering, a good term to use there, Andrew. If we look at the facts there and the figures there, that so many men of a certain age do acquire a brain injury, and if we all know the some of the dangerous and reckless behaviour that men of a certain age youth get up to, not only can they do something dangerous and hurt themselves, but get in a situation where they might be hurt by somebody else. As we will discover when we talk to Adam, the result of a brain injury. There is, as we like to say, a spectrum of symptoms, if you like, or physical signs of what might look like a brain injury. And we will go through some of that as we listen to our conversation with Adam. But part of what we are doing here is to highlight that one. Your brain is a precious, very delicate object. And please look after your head and the brain inside. And please take care of yourself and others. And as we listen to this conversation with Adam, be aware of you might know someone that has an acquired brain injury that might not even know it themselves. So if you see signs or symptoms that may appear to be effects from a brain injury, look into it. Ask your doctor, ask somebody and contact a support organization like synapse to find out if your friend or your family member has a brain injury and what we can do about it. And that's the kind of things we're going to learn by this conversation.
00:04:33
S1: And just before we do that, it's probably worth mentioning the synapse website as well, which people can go to to find out all kinds of resources. So it's synapse SYNAPSE synapse.org.au.
00:04:47
S2: And just to let people know, to synapse have a bunch of peer support groups across the country. And the support group here in West Australia is called Reconnections. Look out for that and contact synapse and contact us here at Vision Australia Radio at In Plain Sight at Vision australia.org to find out the further details about those support groups in synapse.
00:05:10
S1: And here's your interview with Adam.
00:05:13
S2: Hello, Adam.
00:05:14
S3: Hello. Thanks for having me.
00:05:16
S2: Adam. I'll get you to start by telling us a little bit about what synapse is and what their aims are.
00:05:22
S3: Sure. So synapse is the only national brain injury organisation that is working directly with people that are impacted by brain injury across the country. So we do a range of things, but really, I guess our overall focus is about improving awareness and understanding of brain injury, how it comes about, the impacts of brain injury on people's lives, and really, I guess, a strong focus on trying to help services in all parts of community respond better to the impact of brain injury on someone's life. Mhm. So that they can do all the things that all of us take for granted.
00:06:02
S2: Um, just to cover the bases. Give us some examples of what brain injury is. We kind of know if you get hit in the head, you get a brain injury. And for those of us that, like me, are sports fans, we're all well aware of concussion in sports and things that can lead to long term brain injury and so forth.
00:06:18
S3: It can be so many different things, which is one of the real challenges with brain injury and with awareness of brain injury, particularly because it's invisible. So the sort of impact of brain injury, unless someone is, uh, has an injury and is bleeding and has a, you know, visible injury. Nobody knows that anything is going on. So, um, brain injury itself can be caused by lots of different things. Most people tend to know most about things like traumatic brain injury. Um, which is the term we use to speak, you know, largely or generally I guess about um physical, um, interference or disruption to the brain, um, things like concussion, like you mentioned, uh, things that people are becoming much more aware of, uh, concussion. Often you might hear people refer to concussion as a mild TBI. Um, but also things like in, say, older populations, uh, things like stroke, um, the, the impact of, of stroke, um, being, being what we talk about with brain injury, other degenerative conditions. Another area of brain injury that that many people don't know a lot about is what we sometimes can refer to as hypoxic brain injuries, which is often where oxygen has been limited in getting to the brain. So we can see that often through things like violence and strangulation, sometimes in people that do a lot of diving, um, you know, a lot of those types of things. But also you've got, you know, I guess something that's particularly prevalent in discussions at the moment, um, a lot of brain injury being sustained, uh, as a result of repeated blows to the head. Concussion obviously is the obvious thing we talk about. A lot of people have become a lot more aware of things like CTE as the result of concussion, um, being diagnosed later in life. But often what people, uh, don't necessarily understand is it's that same sort of impact that happens in often women that are the victims of domestic violence, where repeated blows to the head, perhaps strangulation, where oxygen to the brain is being limited. Um, so those types of impacts, while we know about them in sport can be quite common across other areas as well.
00:08:37
S2: I think on your web page, there was a whole section about violence and domestic violence.
00:08:43
S3: Yeah, that would be right. It's certainly a really quite a significant focus for us at the moment, particularly probably one of the key, uh, things that we talk about often in relation to domestic violence is that one of the real challenges most people know that many people that are subject to violence in that way often will really struggle to report it to the police or to go and get medical help for a whole range of different reasons. And as you can imagine, if someone has sustained an injury to their brain as a result of that violence, if they're not talking to people or getting help, that injury goes unnoticed. So the impact of that injury can continue to get worse the more that those situations occur. Um, and all the while the person may not get any medical help at all, which is quite different to a scenario of someone that might acquire a brain injury, for example, through a car accident or a sporting accident, where the immediate response is to see a medical professional get advice on what sort of impact has happened. You know, how to best support recovery from that impact. All these things that we can do to try to minimize the impact of injury to the brain in someone that might be, uh, subjected to violence. Often they don't have those opportunities.
00:10:01
S2: Adam, you're the CEO. Can you tell us firstly, how long you've been there and what brought you to that organization?
00:10:09
S3: Yeah. So I've been the CEO at synapse more recently and worked for synapse for about ten years now. Okay. And I guess most of my background is in the area of disability, but, but particularly, I guess my interest in brain injury is really understanding, probably the intersection between injury and the sort of barriers that people face in their lives that are not different for someone with a brain injury to everyone else, but they are amplified. And, and that's a really, I think we see often when working with people with brain injury, that there are so many people that are impacted by brain injury in so many different ways, but often they're not identified. So very often people may be impacted by brain injury and not know they actually have a brain injury. And in those cases, we'll, you know, we often see a lot of people that are impacted by brain injury in areas like incarceration, children that might be in out of home care having been removed from their families. Um, we see a lot of people with brain injury in the homelessness sector, um, where these things aren't, aren't identified or often they may be misunderstood or assumed to be mental health issues rather than an actual problem with the brain.
00:11:29
S2: You mentioned that synapse is an Australia wide a national organisation.
00:11:34
S3: Yeah. So synapse as it is today is a national organisation, is the combination of a number of brain injury organisations that have come together over the years. So both in Queensland um was Brain Injury Association of Queensland, the Brain Injury Association of New South Wales, the Stroke Association of Queensland and also head west in WA. So synapse today is really the product of all of those organisations coming together to try to, I guess, really amplify the voice and the advocacy around brain injury nationally, because it's something that just doesn't happen enough. We know the prevalence is significant and growing.
00:12:15
S2: So synapse is um, both an advocacy organisation and a service provider. Is that right?
00:12:21
S3: We are. Yeah. That's right. Our national focus really is about getting information out across communities about brain injury and what it is and how it impacts people. Mhm. That's really the core of what we do. But at the same time, we deliver specific services to individuals with brain injury and families and organizations, um, in different places across the country. Uh, we also do or have involvement in quite a lot of different research activities, um, from younger age to older age, um, all different, I guess, scenarios of how brain injuries might be acquired or the sort of supports people might need. So research is a really important part of us being able to get information out to community that is evidence based.
00:13:09
S2: I noticed researching some of the services that are available here in Western Australia. The first kind of things you see are hospital based rehab type services. I'm assuming that synapse doesn't do that type of thing. It's after you've had your medical rehabilitation and recovery. Would that be right?
00:13:28
S3: Generally speaking, yeah, that would be correct. I think most of the work that we do is at the end of the or not the end of the pathway, often the start of the pathway for people once they leave rehab and go back home. And normally what we tend to find is often people when they get an injury and they're in hospital or in a rehab unit, they have access to lots of different people helping them, lots of therapies, lots of supports in place. And often it's when people first get home that they then realize the gravity of the changes that have happened in their lives, and that everyday things that they perhaps didn't realize they might not be able to do as well, or it might be harder. And so often we find that people are period of time after they get home from rehab is normally when they reach out to us because they're starting to find things difficult. And there's just frequently not the available services for people to draw on. And often the mainstream services, even if that might be, you know, GPS or, you know, whatever it may be in a local community, often they also really lack current knowledge about brain injury and what that means for someone. So we really do a lot of work, or we try our best to do a lot of work to try to get people connected to both information and services as best we can. Um, and at the same time trying to build awareness of those services so they can actually support people better.
00:14:59
S1: On Vision Australia radio, you're listening to In Plain Sight with Simon Chong and me, Andrew Williams. Our guest this week is Adam Schickerling, who is the CEO of synapse, which is Australia's peak organisation, providing a range of support services and advocacy for people who've been impacted by brain injury and disability. And now it's back to Simon and Adam.
00:15:20
S2: Talking about awareness during August. We have Brain Injury Awareness Week, which has just been recently. Tell us some of the main aims of that. I remember that the overall theme was many pathways, one community or something along those lines.
00:15:35
S3: Yeah, yeah, that's that theme for this year is correct. And I guess really the focus of that theme and why we're talking so much about that. Um, as well as other brain injury organisations across the country is really very much raising that awareness for people that while brain injury is a diagnosis, a particular diagnosis, many people are not diagnosed, you know, so that's one important point. But the other important point is even those that do have a diagnosis, what brain injury looks like for them is entirely different to the person next to them. So we know with brain injury that the sort of injury or the impacts of an injury that someone will recognize will be completely different based on what part of the brain has been damaged, how severely that part of the brain has been damaged. All of those things will determine what sort of functions in our body will be impacted, whether it's our cognition and how we think and feel, whether it's how we move, whether it's our vision or our hearing. You know, all of these things are controlled by our brain. And so the type of injury really impacts what the result of a brain injury is for someone. So this year's theme is really very much about highlighting that that experience is different for everybody. There's then a really a secondary layer that's important in that depending on where we come from, our cultural background, what access to financial resources we have, where we live, how easily we can access services. All of these things will then also impact how well we can manage the impact of that brain injury. So this year's theme is really about recognizing that every brain injury is different, every person is different, every story is different. And we really do this work every year just to try to really raise awareness of that across communities, particularly when we're talking about something like brain injury that people can't visibly see.
00:17:35
S4: Tell us about.
00:17:36
S2: Some of the services that you provide there.
00:17:40
S3: Yeah. So we do a variety of things. We generally don't do, uh, clinical type services. So we provide a lot of support into people's homes in some parts of the country. Uh, and so in some cases, it might be where someone are connected with the NDIS. In other cases, it might be people that, for example, might have had, uh, motor vehicle accidents and the insurers in each state, um, that are providing support for the individual. Um, so we do some work in the area of that direct support. We also in some areas deliver housing for people where that might be part of the challenge that they're facing. We do some work as an organization particularly, or a very strong focus of our organization is working with Aboriginal and Torres Strait Islander communities. And in that area, we do a lot of training and information for communities and organizations, as well as screening for brain injury in different settings. So that's an important part. We also, on a national level, we have a call centre that people can reach out to us to ask questions about brain injury, to access information about different things they might be going through. We run a series of different sorts of peer groups across the country in different locations that we try to link people into. And we also have some areas, particularly in New South Wales, where we deliver a lot of individual advocacy where people can come to us, where they have a really specific issue that they need some help to navigate, whether that's around their housing or access to services or whatever it may be. And we can provide individual advocates that can help people work through those issues with a with a really good understanding of the impact of brain injury on the sort of issues the person is facing.
00:19:34
S2: So in regards to advocacy, Synapse in New South Wales has individual advocacy. But in general you focus on systemic advocacy. Is that right?
00:19:42
S3: Absolutely, yes. It's a very, very strong focus for us, and mainly because, as I mentioned earlier, that we know that there is a lot of people with brain injury across the country that are not able to access the right services and supports like everybody else, you know, and, and there's also a lot of people that we know, have or are impacted by brain injury, but might not be receiving funded services from the government, you know, or they might not even know that they have a brain injury. So often we see a lot of people that can be really disadvantaged, both financially and socially. You know, things after brain injury can become a lot harder, a lot more overwhelming. You know, some of the impacts of of brain injury, they can be so far reaching from a sort of physical disability, but through to, you know, people that might really struggle with memory, you know, remembering pieces of information after a short period of time. Or, um, it might be about regulating their emotions and, you know, getting upset and not being able to calm down as well. You know, we see probably around about 60%, some of the evidence says of people with brain injury that also develop a mental health condition. Alongside that, often due to the the impact of feeling isolated and alone after injury. You know, so there's so many different things that impact people with a brain injury. And it's really the importance of that theme this year, being every brain injury is different. It really helps us recognize people with brain injury are just like you and I. We're all the same. Um, there's just some additional challenges on top of that. You know, so we've got to really recognize that people with brain injury are struggling with mental health. People with brain injury are struggling with often with, with housing or with relationships in the family and, you know, a whole range of different things in life.
00:21:40
S2: So, Adam, you were just talking about the isolation and loneliness and mental health challenges of people who have an acquired brain injury. I believe you have some support groups connect up groups, coffee groups or something along those lines in different locations.
00:21:54
S3: We do. Yes, it's a I, I think we find it's a really critical part of the work we do is not only getting information out to people impacted by injury and communities, but it's connecting people with brain injury and families and carers of people with brain injury together, because the most powerful learning, often for people, is hearing and understanding the story of someone else that has been through similar things. And that's a really important part. So we have a whole series of groups that run across the country in different locations for people to catch up, sometimes social activities, sometimes it's more about information and learning that people want to do. Um, so it can be for a whole range of reasons. And I guess importantly with that, it's really very much driven by people in community themselves approaching us. And then we try to help them put things in place for, for those groups to be facilitated so that it's people running those groups themselves, but having us as a resource to assist them to do it. But we do also run a series of online groups for people that might not be able to get out and about as easily. So it's really about just providing that opportunity for people to connect with each other, debrief a bit, share a bit about the challenges going on for them in life.
00:23:15
S2: Just remind us what those groups are called, please, Adam.
00:23:18
S3: So some of those, the in-person groups are called reconnections groups.
00:23:23
S2: I like that.
00:23:24
S3: And there's lots of links on our website and that sort of thing. If anyone wants to reach out about those.
00:23:29
S2: We are broadcasting from the Perth studios of Vision Australia, and I believe that your office is in Cloverdale or Belmont, and those reconnection groups are held in the Belmont Hub. I looked that up online, if you can, and you can find those, and I will share those details on the podcast description and show notes. Can you tell us, Adam, how does one get connected with an organisation like yours?
00:23:52
S3: Yeah. So it can be various different ways. I think we often find that when people sustain an injury, um, and they end up in a hospital or getting, uh, medical support and maybe going through rehab. Often the hospital or the rehab unit will try to provide people with information about sign ups, uh, as they leave the service so that that contact point is there. Certainly people can find us online and all those types of things. Um, but increasingly, I guess we tend to also connect with people in the work we do out in communities and getting out and talking to different groups around the country. Um, that tends to be the way we connect with a lot of people, but, um, we have a whole range of information, of course on our website, but often people just really want to talk to someone, you know, and so that's a really important part of what we do.
00:24:48
S2: Whilst the NDIS is an important and valuable scheme, it is quite controversial right at the moment. Can you tell us like someone's had a car accident or a workplace accident, whatever it might be, what gets looked at first because obviously sometimes the obvious thing is, oh, look, their arm or their legs are smashed up and they need physical rehab for that kind of thing. And the brain injury might not be as noticeable. How is that addressed within an organization like yourself?
00:25:15
S3: Yeah, again, that's a really interesting question because one of the things we often talk to families about this, that often what we tend to find is a lot of people that may have sustained an injury and been through maybe a hospital or whatever it may be. Often it's the family members that will identify changes in their family member when they get back home. So it becomes a really important part of families being able to have a bit of an idea of what to look for and if they're noticing changes. And that could be something like one of the examples we often often use when we talk about brain injury is the example of, say, an older person that has dementia. Yes. Because it's something most of us can really relate to easily. Having someone in our own families and what you what we all notice in someone with dementia often is that maybe their personality changes. You know, the way they talk, the way they engage might be a little bit different to what it used to be. Maybe they might start recognizing who you are visually, but they can't remember your name. You know, maybe they're forgetting to do little bits and pieces of things that they've been able to do for 50 years prior to that, you know, or sometimes we, we see quite often, maybe the person is, is getting a lot angrier than they used to. You know, they find it a little bit harder to manage their emotions. You know, all of these things that we see in things like dementia is what brain injury does. Um, depending on the part of the brain that that's impacted, of course, but it's a really good example for, for people to think about And the reason I use that is going to your question, that often the only people that can really see those changes is family. Um, so we can go off to, um, a specialist or a medical provider to, uh, you know, have scans and assessments to try to assess certain things. But often, um, knowing the change, um, is something that really comes from families.
00:27:22
S2: Because often people might be confused for being intoxicated or mentally ill or, or having dementia even.
00:27:30
S3: Yeah, absolutely. And, and things like dementia is a great example. The impact, you know, the long term impact of dementia. It is a brain injury. It's that that's the impact. So, you know, often we hear quite frequently from people that are, um, perhaps been engaged with the police and where they've been perhaps pulled up by the police with an assumption that they're intoxicated, where they actually have a diagnosed brain injury and in their speech is impacted or their gait, which is something that's quite frequent as well. The way that they walk might be impacted. So people make this whole range of assumptions because they can't see physical signs of a disability. So they make assumptions about what explains someone's behavior. And that can be really very problematic for someone with a brain injury, where sometimes it's very hard for them to express, or sometimes they might not even perceive that there is a problem, you know? So it can be really difficult for people to, to understand that. And I think the other thing, which is, you know, a really critical part of brain injury is that someone understanding that they have a brain injury and what part of their brain is impacted is really important to then understand how we can help them or how we can support them better. Because if, for example, as you mentioned, someone has an injury to the front part of their brain, the frontal lobe. That's the part of the brain that that does a lot of things. But one thing it does is it helps control or regulate, um, how we manage our emotions. So often someone that has injury to the front of their brain might really struggle, um, being able to manage how, how they're responding to things emotionally, they might get upset really quickly or get really abrupt and those types of things. And other people might perceive that as someone being rude or unhappy. Um, whereas in reality that part of the brain that function in the brain is impaired because of the injury. And so you can see how that can really impact, for example, you know, maybe, um, a lot of people that that might have a frontal lobe injury where those types of impacts are evident. Maybe it's harder to maintain their relationships. Yes. Because people might get a bit upset with them and think, I don't want to be around you because you're always angry with me or, you know, you're not listening to me or those types of things without recognizing that that's, that's how the brain is working at that time. Um, and it doesn't mean that people can't find ways to manage that, but they need support from those around them to understand them and help them.
00:30:13
S2: I wanted to ask you, um, on a practical note in regards to identifying themselves of having a brain injury, an Abi or whatever it might be. Do people have some kind of identifier? Do they have a card? I know people, some people with autism or learning disability and the like might have a card that they can carry. So for instance, if there is interaction with the police or ambulance or whatever, they pull out this card and say, I'm not intoxicated. I look, I have a brain injury or in the case of invisible disabilities, have sunflower. Are there anything like that for people with an acquired brain injury?
00:30:46
S3: So there's some work that a Brain Injury Association of Tasmania has done in that area. It's not something that synapse generally does only because I guess we work with so many people. Um, and it's increasingly a part of our focus, people that don't know that the reason things are happening for them is a brain injury. Um, and, and so, so often it's really about services, understanding and organizations and government and police and all sorts of all parts of community understanding the impact of brain injury and what to look for because so often, uh, people won't have that diagnosis.
00:31:27
S2: We have to finish now. Adam, is there anything you'd like to leave us with before we have to say goodbye?
00:31:30
S3: I think just thank you for the opportunity to have a talk about brain injury. I think in the work we do, there's nothing more important than building awareness about what brain injury is and how it impacts people's lives. So, um, it's a great opportunity to share that.
00:31:45
S2: Thank you very much, Adam from synapse, Australia. And I really appreciate your time and your great input and insights into brain injury and brain injury awareness. Thanks for joining us here on Vision Australia Radio.
00:31:57
S3: Thank you.
00:31:58
S2: That's all we have time for this week, folks. Thanks for joining us once again and look forward to speaking to you next time. And bye for now. Cheers.
00:32:16
S1: That concludes in Plain sight for this week. Join us at the same time next week on Vision Australia Radio. VA Radio Digital and online at VA radio.org. You can also listen on demand by searching for In Plain Sight by Vision Australia Radio. Wherever you get your podcasts, or ask your smart device to play in Plain Sight by Vision Australia Radio. Thanks for listening.
00:32:40
S2: Thank you.
