Borderline Personality Disorder Research
Consumer and Carer Surveys
Since 2011, Lived Experience Australia has run two national surveys asking people with a diagnosis of Borderline Personality Disorder, and the people that support them, what their experience of the mental health system has actually been like.
A great deal of what's written about BPD comes from clinicians and researchers studying the condition from the outside. This research comes from consumers and carers describing it in their own words. That evidence directly informed the National Health and Medical Research Council's Clinical Practice Guideline for the Management of BPD, still the reference point for how BPD is meant to be treated in Australia. A third round of surveys is now being planned, continuing the work.
What consumers and carers told us
The two survey rounds, in 2011 and again in 2017, asked largely the same questions of a new group of respondents, which lets us see what has changed and what hasn't. For consumers, the headline concerns barely shifted. Not being taken seriously by services was the single most common source of anxiety in both rounds (70.5% in 2011, 64.9% in 2017), followed by discrimination because of the diagnosis (57.1% in 2011, 60.7% in 2017) and not feeling respected by mental health professionals, which the report describes as staying at a similar level across both surveys (65.4% in 2011, 68.9% in 2017). Whether a health professional had properly explained the diagnosis to them also barely moved, from 37.8% saying no explanation was given in 2011 to 34.6% in 2017. These are the raw survey figures; the report doesn't apply a formal significance test to this particular set of comparisons, so they're best read as a consistent picture rather than a proven trend.
The comparable figures for carers were tested for statistical significance, and the results are harder to read as anything but a decline. In 2017, 67.5% of carers said not being taken seriously was a major source of anxiety about the person they cared for, a statistically significant rise from 44.1% in 2011 (p<0.001). And 74.5% of carers said no medical professional had explained to them what a BPD diagnosis actually meant, also a statistically significant rise, from 62.4% in 2011 (p=0.04).
The surveys also asked directly about crisis and safety. In 2011, the large majority of consumer respondents reported having attempted suicide or engaged in serious self-harm requiring medical care, and most carers said they had never received a crisis plan for the person they support. These figures reflect how much is still at stake in getting BPD care right, and why LEA continues this research. If reading this brings anything up for you, please speak with someone you trust, and if that's not available, you can find support here.
The research
2011: Foundations for Change
The first survey, led by Janne McMahon OAM and Associate Professor Sharon Lawn of Flinders University, drew responses from 153 consumers and 121 carers around Australia. It fed directly into the work of the federal BPD Expert Reference Group, established in 2010 by the then Minister for Mental Health and Ageing.
2017: Six years on
In 2017, LEA repeated the survey with a larger group of respondents, asking substantially the same questions so results could be compared directly against 2011. That comparison is what makes this research valuable: it doesn't just describe the problem once, it tracks whether things are getting better.
A third survey is planned
LEA is planning a third round of this research, continuing the work begun in 2011 and repeated in 2017. We don't have a date to share yet. Research like this takes time to plan and fund properly, and we'd rather do it well than rush it. When it's ready, we want as many consumers and carers as possible to have their say, so their experience shapes the next stage of BPD care in Australia. Subscribe to LEA's newsletter to be among the first to know when it opens.
About the BPD Collaborative website (South Australia)
This research page covers LEA's national survey work. Separately, LEA also developed bpdsa.com.au, a South Australia-specific website connecting consumers, carers, families and clinicians with local BPD support services and referral pathways, including the BPD Collaborative (BPD Co) state-wide service. It's a directory of where to find support in SA, not a research site, and LEA does not provide support services directly through it.