Advocating Government Program Allocations and Policies Prioritizing People with ABI and their Families [Interview][Transcript]

Nick_Rushworth_Brain_Injury_AustraliaGuest: Nick Rushworth
Presenter: Wayne Bucklar
Guest Bio: Nick Rushworth has been Executive Officer of Brain Injury Australia since 2008. He was also President of the Brain Injury Association of New South Wales between 2004 and 2008. In 1996, Nick sustained a severe traumatic brain injury as a result of a bicycle accident. Before joining Brain Injury Australia, Nick worked for the Northern Territory Government setting up their new Office of Disability. Formerly a producer with the Nine Television Network’s “Sunday” program and ABC Radio National, Nick’s journalism has won a number of awards, including a Silver World Medal at the New York Festival, a National Press Club and TV Week Logie Award.

Segment overview: In today’s Health Supplier Segment, we are joined by Executive Officer of Brain Injury Australia Nick Rushworth. He is here to share information, including BIA’s roles and operating principles. Formed at the first national community-based conference in 1986, the Federal Government began funding Brain Injury Australia in 1991. Brain Injury Australia represents the needs of people with an acquired brain injury, their families and carers. They work at a national level to ensure that all people living with acquired brain injury have access to the supports and resources they need to optimise their social and economic participation in the community.

Transcription

Health Professional Radio – Brain Injury Australia

Wayne Bucklar: You’re listening to Health Professional Radio. My name is Wayne Bucklar and my guest today is Nick Rushworth. Nick is the Executive Officer for Brain Injury Australia and joins us from Australia to talk a little bit about both his experiences and the experiences of the organization. Nick welcome to Health Professional Radio.

Nick Rushworth: Thanks Wayne.

W: Now Nick Brain Injury Australia may not be something that our listeners are familiar with. Can you sketch in a little bit about what the organization does?

N: It was founded in 1986, it was like a lot of organizations that work in the common disability advocacy space. It was founded by group of parents and carers of people with Brain Injury. It kind of transmogrified from there into kind of federal association and then due to the kind of convulsive changes that will come about as a result of a National Disability Insurance Scheme in Australia, it recently transmogrified again into a public company. It’s a very, very small organization, in fact you’re really talking to Brain Injury Australia now. And I guess I’m the closest thing you’ll find we’re national level lobbyist on behalf of the 700 thousand or so Australians who’s got a brain injury.

W: That’s a big number, much bigger that I had ever imagined.

N: Yeah and that’s based on the Australian Bureau of Statistics does a survey every 3 years sort of survey of disability, ageing and carers. Where they go about 40,000 private dwellings and some institutions and asked people basically knock on their door and say “Anyone in here got a disability?” And based on the last one that was done in 2012 there are 700,030 Australians who are identified as having a brain injury, importantly with daily activity limitations and participation restrictions. So what that means is they’re not counting every single person who had a concussion playing soccer whey they were 9 years of age, this are people with ongoing daily impairment, incapacity restrictions from their brain injury. And a lot of those people would be stroke, have experienced stroke which is the largest sub-group of what’s called “acquired brain injury” so any damage of the brain that occurs after birth. And then the next biggest group that would be “traumatic brain injury” or “serious head injury” from things like motor vehicle accidents, workplace accidents, falls and so on.

W: You mentioned sport and we’ll get on to that in a moment. But stroke you say is the biggest cause and traumatic injury after that?

N: Yup.

W: The sort of acquired brain injury that I think about and I guess I’m influenced by what the media what talks about, is often that traumatic injury from the bike accidents and the car accidents and that sort of thing. For Brain Injury Australia, is there any restriction of the scope of brain injury that you deal with or is it all acquired brain injury?

N: No … and I take your point. If I was to walk out of the street right now and do a … of the people who I met, most people when you ask them about brain injury would associate it with the young men, the young women, the motor vehicle accidents, the work place accident – that kind of thing. But it’s much, much more disparate and diverse group of external causes than simply that. So if I as it were represent everyone from the shaken baby right through to the old person who falls over and lands on their head. So a lot of people in the community would know the leading cause of traumatic brain injury throughout the western world aren’t motor vehicle accident or assaults – it’s falls. Not because there are more drunk teen agers taking high dives of balcony 2 in the morning on Saturday after 45 rum and cokes. As the population ages more, all people fall away and land on their head. So the group in population with the highest traumatic brain injury incidence and death rates, it turns out is the fastest growing section of the Australian population, those 85 years and over. So and also there are other aspects too so brain injury can be caused by hemorrhage, by aneurysm, by alcohol or other drugs, by what’s called “hypoxia or anoxia” where oxygen is deprived in the brain by those things like asthma attack or near drownings or drug overdoses. So it’s a fairly again disparate and diverse group of people. It’s much, much more than the young men, the young women, and the motor vehicle accident.

W: Yes, it’s an interesting area that doesn’t get a lot of attention beyond the dramatic press headline I guess.

N: And it’s because only it is the leading cause of death and disability in young people. So it’s quite understandable if I just would be the young man, the young woman in the motor vehicle, the workplace accident because the impact on the person, the collateral impact on family. So Australia, if it’s the right word, we’re blessed with some good longitudinal surveys of the outcomes of traumatic brain injury in young people, it’s quite a…catalog 9 and 10 return of the care of their family, only about half are employed 5 years post-injury, one in 5 attempts suicide, marriage involving a problem over the traumatic brain injury, roughly half of those would dissolve within 6 years of injury. And most people who experienced traumatic brain injury report feeling more isolated, more cut-off from friends and family. The lifetime cost of care for your average motor severe traumatic brain injury is roughly about $5 Million. And it’s simply because of the fact that all the stuff where the rubber meet the road as it were in the brain injury is all the cognitive and behavioral stuff. So roughly 3 in 5 people with brain injury make a good physical recovery, but their brain doesn’t work in the way that it once did and they have difficulty with things like planning, organization, memory, concentration, attention which make their capacity to return to work, particularly their pre-injury employment much more difficult.

W: Yes, I can understand that. Now Nick because one of the roles of Brain Injury Australia is advocacy, I think I heard you say earlier that you’re the only body who’s dealing with acquired brain injury as an advocacy group?

N: Well no, there’s a range of organizations but, so as I think I mentioned to you earlier we recently restructured reformed into a public company, we were a federal association. So there are in most states and territories of Australia I think state based, territory based advocacy are fit for people who’ve experienced acquired brain injury but we again work at a national level.

W: Yes.

N: To do the kind of lobbying of politicians, of government departments to get a better deal as it were when it comes to programs or services and support for people who experience brain injury.

W: And having talked to the government from the other side of the question, in fairness I have to say that their policy approach is that they prefer to deal with one organization who is representative of all the constituents who are involved. And it’s very difficult for them if there is not a federal body they can deal with. So in all likelihood not is it about getting a larger share of the pie than you should, but without an advocacy body you tend to get all the extra share of the pie than you should because you just don’t measure up what the other bodies who are representative on a national scale.

N: Yeah, and look I mean I’m in absolutely no doubt that this is an increasingly competitive space. So I am as it were out there in the market place trying to elbow out all the other worthy causes and diseases of the week, like kids with cancer, bowel cancer, breast cancer, all the neurological diseases, for example and neuron disease, multiple sclerosis and so on and so forth. It is a competitive space and that’s a natural byproduct of the fact that government are finding it, that difficult to find the money to support every single organization that comes to them to lobby for funding. And certainly I’d be the first person to admit that there’s been such a significant amount of in-fighting within the disability advocacy sector, that I think governments plural, not just labor, not just liberal that government have gotten a bit sick and tired of having to answer to or report to or deal with a myriad of organizations lobbying often for the same constituency. So it’s not a surprise if there’s been some win-win at government direction of disability advocacy organizations at a national level.

W: Yes. So that’s I guess likely to become more evident in the future as disability funding gets more focused at a policy and regulation level, I think you may see some more of that?

N: I wouldn’t be earning my keep with an audience of health professional in mind to let them know that if they like what I’m talking about, they are more than welcome to make a tax-deductable donation to support the society called “Brain Injury Australia.”

W: Well we hope that message gets a little way through to our audience. Nick one of the things been getting my attention recently has come about because of the movie “Concussion” that stars Will Smith and I think it’s just about to open in Australia. This is a story about acquired brain injury I guess from repetitive concussions in the field of sports, occurring in sport. What are you advocating in regard this sporting injuries?

N: Well a couple of dispelled by way of background because concussion in sport is one of four multi-awareness ways campaigns that I run. The other one involved what’s sometimes called “shaken baby syndrome or inflicted traumatic brain injury” in infants, falls in older people, People with a brain injury in the criminal justice system many 60% of donations at all prisoners would screen positively for brain injury. Following enough when I was researching for a policy paper for the Australian government, the whole notion of concussion in sport a number of the senior sport physicians that I approached, I went into the subject assuming that they like me for that concussion, a traumatic brain injury down to mild in the mild traumatic brain injury spectrum. But a lot of them didn’t in fact think of concussion as being a brain injury because it was damage to function and not structure. So it’s one of those areas where the diagnosis of brain injury is … or capturing other areas of trauma to the brain.

W: Uh huh.

N: But yeah look concussion in sort is the probably the hottest topic in sports medicine at the moment. The film is about to be released in Australia in the middle of February starring Will Smith it’s very much focused on grid iron, which is I think has a different kind of do I say concussion risk exposure than maybe our collision sports in Australia linked union AFL. But still it’s brought to the public attention and certainly the class action lawsuit right before… of retired good player board against the National Football league in the United States has certainly raised the public and the sports administrators’ awareness about how important it is to try and reduce the incidence of concussion but more importantly to manage it and assess it appropriately. So Brain Injury Australia is part of that policy work for the Australian government team up with the so called 5 R’s confusion, trademark 5 R’s of concussion – which is Recognize the injury, Removal from play, Referral to a doctor, Rest and then Return to play. And so I think the bottom line about concussion from Brain Injury Australia’s perspective it is the most common kind of brain injury outside of do I say stroke. There were 3000 people hospitalized in Australia for concussion from sport in 2004-5. Now hospitalizations of course are clearly the tip of the ice berg there are plenty of people that do concussed playing sport or simply be in a playground or having an accident at home, or simply have a breaks and lie down and return to their normal lives. So I got no doubt at all, concussion is the most frequent kind of trauma to the brain. And for 80 to 90 percent of people that have experienced a concussion, they make a full recovery within 7 to 10 days. So the message is the Brain Injury Australia seeks to disseminate a really, really simple one which is concussion is a kind of occupational hazard of life, of ordinary life. But certainly people involved in organized or disorganized sports need to realize that there is an approach, a responsible approach to when you are concussed to certainly take yourself out of play or have the player a risk concussion taken out of the play to think some kind of medical attention or medical advice and only return to either training or competitive play when all the symptoms of your concussion have resolved. And it’s really not much more to it than that, I think it’s fair to say that the elite ranks of particularly the … the union and AFL here in Australia by getting their act together when it comes to managing professional sports players, that there is an enormous amount of grassroots work that needs to be done with education and training for local leagues, the amateur competition in out of pubs in regional parts of Australia, there is an awful lot of education and training that needs to be done in those kinds of environments and that’s the part of natural gain for organizational like Brain Injury Australia and its partner organization in sports concussion education with the Sport Medicine Australia.

W: Nick Rushworth, Executive Officer of Brain Injury Australia, thank you for your time today. It’s been fascinating chatting with you, how can people get in touch with the association?

N: Yeah, very simple. It’s a very, very simple website address to remember which is www.braininjuryaustralia That’s all one word, no spaces, no dots, lower case braininjuryaustralia.org.au or the other 1800 number in Australia which comes through to my mobile phone so it comes directly to me which is 1800-brain-1.

W: Now because I’m always getting into trouble for giving URLs and phone numbers without enough warning, pencils ready listeners that was www.braininjuryaustralia.org.au or 1800 B R A I N 1. Nick thank you for your time this morning, as I said it’s been having a fabulous chat with you. When concussion breaks in Australia if there is a huge role you might have another chat about it and in light of the impact of that the movie has, but I can’t see it as you said earlier, I can’t see it being a replacement for Star Wars and the number one best seller.

N: (Laugh)

W: I have seen the movie and it was fascinating and I did enjoy it. So if you are interested in the issue of concussion in sport, it’s probably worth of your time. There’s a free plug of the movie, something I don’t normally do. Nick thank you very much, it’s been a pleasure having you with us.

N: Thanks a lot Wayne.

W: Now if you missed my conversation with Nick Rushworth Executive Officer of Brain Injury Australia, the good news is we have both the transcript of our conversation on the website. We also have an audio archive on SoundCloud and YouTube and you can find all those details at www.hpr.fm. My name is Wayne Bucklar and you’re listening to Health Professional Radio.