By Nick Rushworth, Executive Officer
Whenever I speak about brain injury it’s always with stroke as its largest subgroup. At the same time, I’m ashamed to admit that Brain Injury Australia has done next-to-no stroke advocacy, focussing instead on traumatic brain injury. But whenever Brain Injury Australia has been held to account for this blind spot in its advocacy, it’s invariably been at the hands of young strokes – who end up in with Brain Injury Australia as an advocate of last resort, frustrated by one or all of the acute care they didn’t get, the rehabilitation they didn’t get enough of, or the dearth of age-appropriate supports in the community.One of Brain Injury Australia’s responsibilities is to set the “theme” for each year’s national Brain Injury Awareness Week. Traditionally, the themes have been built around policy papers Brain Injury Australia has prepared for the Australian Government, on: the leading cause of death and disability in children who have been abused; inflicted traumatic brain injury (sometimes called “shaken baby syndrome”); the leading cause of traumatic brain injury across all age groups and causes and throughout the developed world – falls, due to ageing populations; people with a brain injury in the criminal justice system – as many as 80 per cent of Australia’s 30,000 adult prisoners report brain injury; concussion in sport; and women, family violence and traumatic brain injury. What these “themes” demonstrate is that brain injury is the most disparate and diverse of disability types – as manifold as its causes and the ages at which injury is acquired. In 2012 there were around 730,000 Australians living with a brain injury – crucially with daily “activity limitations” and “participation restrictions”.
Brain Injury Australia chose young stroke as the theme for 2016’s national Brain Injury Awareness Week for two reasons. Firstly, it had been provided with unpublished data from the Australian Stroke Clinical Registry revealing that 1 in every 4 strokes now occurs in Australians aged under 65 years. Secondly, to ensure that the implementation of Australia’s new National Disability Insurance Scheme – providing “about 460,000 Australians under the age of 65 with a permanent and significant disability with the reasonable and necessary supports they need to live an ordinary life” – is responsive to the age-specific needs of young stroke.
To support the advocacy that would extend from the Week, Brain Injury Australia also produced a Position Statement on young stroke, available here. It briefly compiles stroke prevalence, incidence and trend data – including the results of a recent survey of 5 million stroke hospitalisations in the United States over 10 years which found that, while rates of stroke had decreased for people aged 65 plus they had increased for those aged 45 to 64 by 5 per cent, and in those 25 to 44 by 44 per cent. It summarises the research into young stroke and makes a series of recommendations for age-appropriate services and support, stroke awareness-raising and research.
Brain Injury Australia’s core representational-political challenge remains unchanged – to solve the puzzle of high prevalence (relative to other disabilities) matched by apparent high unmet need, confounded by low service and income and other support uptake. At the risk of gross stereotyping, a potentially very large number of Brain Injury Australia’s constituents comprise men and women, in their 30s, 40s or 50s, living in their pyjamas being cared for, more often than not, by mum. The arithmetic, above, suggests – with 60,000 stroke events in Australia each year – that many of them are young strokes.
The Week went well. For instance, the national launch event was well-attended, and there was significant media coverage. But every week is an awareness week for some worthy cause, every day is an awareness day for some obscure disease, some unsung affliction. And these days and weeks are like ocean waves that rise, break, wash over the public only to re-form. Every year. I threw down the gauntlet to young strokes and their supporters, to brain injury advocates generally to keep prosecuting the case for young stroke – against some curious inertia from health services and stroke advocacy organisations – the other fifty-one weeks of the year, and all the weeks of the years to come. And I promised – the only response fit for lobbyists like myself – to lift Brain Injury Australia’s game, to match.Click here for more information on this topic