Setting the scene for Acquired Brain Injury in Australia

We’d like to thank all the speakers, industry advocates and participants who supported our 2nd Annual National Acquired Brain Injury conference in Sydney this week.  Your commitment, experience and enthusiasm greatly contributed to the honest and energetic discussions that took place over the two days.

We’d particularly like to thank Nick Rushworth, Executive Officer, Brain Injury Australia who chaired proceedings and set the scene for discussions from the outset by challenging us to walk the talk in transferring knowledge between researchers,clinicians and service providers. We’re delighted to share a transcript of Nick’s comments with you below.

My guess is many of you – particularly, those of you already working in the field of brain injury – have been led here today by the star of the promise of the results of new research. So, it’s on a brain injury research agenda that I’d ask you to allow me a breath, a little scene to sermonise.

My layperson’s sense is that “we” are entering “good”, and potentially prosperous, times for research into traumatic brain injury, at least. A recent Thomson Reuters ScienceWatch scan of worldwide research output found the number of papers about traumatic brain injury had nearly quadrupled in the last decade, to around 4,000 per annum currently. It needs to be said, though, that whatever new research momentum available comes at high personal costs, driven – on the one hand – by what’s been referred to as the “signature injury” of the wars in Iraq and Afghanistan; the 300,000 or so United States Armed Forces veterans who’ve sustained a TBI, just since Operation Iraqi Freedom. Driven, on the other hand, by the 4,000 former gridiron players who recently settled – for US$800 million – a class action lawsuit against the National Football League, a lawsuit that alleged the League “was aware of the evidence and the risks associated with repetitive traumatic brain injuries virtually at the inception, but deliberately ignored and actively concealed the information”. But however that momentum might carry funding internationally, I suspect the bucket brigade to the big research dollars is going to be down the acute, hospital, medical end of head injury.

Soon after I started in this job – realising my role as nothing less (or more) than [that of] a lobbyist – I wanted to find out how many constituents I had. I asked the Australian Bureau of Statistics for their best estimates based on their triennial Survey of Disability, Ageing and Carers, disaggregated for brain injury. From its most recent iteration, in 2012, they came back with 727,000 – crucially, Australians whose brain injury means daily “activity limitations” and “participation restrictions”.

That number surprises many people – as high. It’s still likely an under-estimate, though, when you think about the circumstances under which such surveys are conducted – where the respondent has to know that they’ve got a brain injury, one they’re willing to disclose to complete strangers, and strangers from government. And the Survey doesn’t – never has – captured the nation’s 87 adult jails – where rates of brain injury can be as high as 60 per cent. And the Survey doesn’t – never has – captured very remote areas – which, in effect, leaves 86 per cent of Australia’s landmass unmapped. Only 3 per cent of the NATION’s population live in very remote areas, but nearly half of them are Aboriginal and Torres Strait Islander. The very rough rule of thumb? Rates of brain injury among Aboriginal and Torres Strait Islanders are around 3 times that of the rest of the population.

On the same calculus, half of the Northern Territory’s population remains unmapped by the Survey. As does all of its Barkly Region – the Territory’s “trial site” for the National Disability Insurance Scheme – an area 40 per cent larger than Victoria. (Remember? It was the Survey that both the Productivity Commission, and the Disability Investment Group before it, relied upon for both scaling, and COSTING the NDIS.) 530 people – or 1 in every 15 residents of the Barkly – are on a Disability Support Pension, a DSP. And for 68 of those – or 1 in 8 – the “grant reason” for their DSP is a brain injury. Yet, the number of people with a disability in the Barkly the Heads of Agreement between the Commonwealth and the Northern Territory Governments reckons will win a “personal, goal-based plan” under the NDIS?

103.

The wildest of guesses.

What follows, in summary, are the findings from local longitudinal surveys into the outcomes of severe traumatic brain injury: 9 in 10 return to care of their family; the average costs of care are around $100,000 per year; only 40 per cent of people living with severe traumatic brain injury are employed 5 years post-injury; of all people with a disability, they have the second lowest representation in employment; over half of all marriages involving a partner with a severe traumatic brain injury dissolve within 6 years of injury; half report they have lost friends, have become socially isolated since their injury; they run a 60% likelihood of major mental illness during the course of their lifetime; and 1 in 5 will attempt suicide.

Take almost anything from that grim catalogue and I think it’ll make for a safe marker of unmet need. Yet, of the over 700,000 Australians the ABS estimates have a brain injury with daily “activity limitations” and “participation restrictions”, only 16,000 use a National Disability Agreement-funded service, out of a total of 310,000 service users. Only 2,200 people with a brain injury – out of 160,000 – use Disability Employment Services. And only 21,000 – out of 820,000 – are on a Disability Support Pension.

Perhaps most of you have long sinced solved the riddle of high prevalence matched by high unmet need, confounded by low service uptake. That some, many of the 700,000 are hidden in alcohol and other drug services, in services to the homeless. That others eke out a living, a life. Subsist somehow. But, at the risk of gross stereotyping, perhaps many more have, what, settled into literally embedded patterns of care – living in their pyjamas being cared for, more often than not, by Mum. Patterns of care that are very hard to break. My memory of my rehabilitation ain’t crash hot. But I CAN remember being busy – bouncing between daily physiotherapy, occupational therapy, talk therapy. For many people with a brain injury, discharge from hospital, from rehabilitation must feel like falling off the edge of a cliff.

If I could unilaterally dictate the priorities in brain injury research, I’d be funding researchers willing to venture downstream – to work in that window of opportunity 6, 12, 18 months post-injury, to work with all the messy heterogeneity, the manifold intangibles of the psychosocial, where HEAD injury meets BRAIN injury. I’d be funding researchers with the platinum people skills necessary to be able to transplant themselves, in imagination, into the life circumstances of the teenage would-be jetfighter-pilot-cum-panel-beater-cum-primary school teacher coming-to-terms with (mostly) his (sometimes) her revised, not necessarily reduced, prospects. (And with all the rapport-building skills to match.) And I’d be funding research to identify the active ingredients in an intervention that would enable as seamless as possible a coming-to-terms and adaptation to brain injury, an intervention that would lay the tracks to real community reintegration.

It’s hardly a revelation from god but this would align nicely with what Australian governments – plural – what their research strategy for brain injury might be, if they had one. Take your pick of the slogan – whether it’s the “dignity of work” (Julia Gillard) or “lifting not leaning” (Joe Hockey) what is thought to constitute a productive, a national, life – membership of “team Australia” – is now genuinely bipartisan. It’s, what, ALL hands on deck. And for as long as governments remain the majority stakeholders in research funding, they, their political masters have long lost interest in handing out medals in a misery Olympics – in lobbyists like me only rehashing how bad things are for their constituents, and – cap-in-hand – how expensive to fix.

Likewise, research seems less and less likely to get funded if it simply rescales problems governments think they already know about. I hope that this is not taken as my taking a club, a feather, a wet lettuce to brain injury research, brain injury researchers. Even if not, I can take as good as I can give, not let myself off the hook, let you in on my continuing crisis of relevance. Advocates like myself haven’t just, well, got to do a better job at reaching the, what, hundreds of thousands of constituents who don’t even know that we exists, but also in reflecting what’s relevant to them in what we do.

To which end, I’d like to use the opening of this conference to announce that Brain Injury Australia will newly seek to walk this talk, that effective last Wednesday, it has given up its federated association structure for a company limited by guarantee. At its base, Brain Injury Australia Limited will seek to greatly expand its organisational membership, to optimise both its local engagement and responsiveness to the needs of individuals with a brain injury. Married with that will be a much enhanced information and referral service, an NDIS-ready accreditation system for ABI-capable services and supports as well as “knowledge transfer and exchange” events – bringing researchers together with clinicians and service providers. For those of you interested in finding out more, please – by all means – come and talk to me over the course of the next couple of days.

To find out more about Brain Injury Australia’s activities, please visit www.braininjuryaustralia.org.au.