Why We're Running Our Third National BPD Survey
In 2011, Lived Experience Australia's founder Janne McMahon OAM wanted to ask people affected by Borderline Personality Disorder a question nobody had put to them at a national level before: what is your experience of the mental health system actually like? The answers, gathered again in 2017, went on to directly shape the National Health and Medical Research Council's Clinical Practice Guideline for the Management of BPD, and that guideline is still the reference point for how BPD is meant to be treated across Australia today.
This month, that a new version of that research returns. 'Lived Experience of Borderline Personality Disorder (BPD) and Help Seeking' is our third national survey, run in partnership with the Australian BPD Foundation and Flinders University. It launched during BPD Awareness Week, under the theme "Connection Changes Outcomes: In BPD, Every Interaction Matters", a theme that speaks to something people with BPD and the people who care for them tell us often: the quality of a single interaction, whether it's with a GP, a hospital, a case worker or a family member, can shape someone's whole experience of care. Fifteen years after helping start this research, Janne is this year's national Ambassador for BPD Awareness Week, carrying the same message she began with, that people's experience of BPD care depends on being heard.
We're running this survey again because a lot has changed since 2017, and we want to be open to what new information there is available to us through what you share. Clinical guidelines have been updated. Medicare Mental Health Centres have opened in communities that didn't have anywhere like them before. More people with lived experience are now working in peer roles across the sector, sitting alongside clinicians rather than being spoken about by them. Whether these changes have actually improved what it's like to seek help for BPD, or whether the same old gaps have just moved somewhere else, is exactly what this survey is designed to find out.
That's also the point of doing this research at all, rather than relying on clinical records or service data. Case notes can tell you what happened in an appointment. They can't tell you what it felt like to be turned away from an emergency department, or what it meant to finally find a clinician who didn't treat a BPD diagnosis as a reason to stop listening. That's the gap lived experience research is built to close, and it's why we believe lived experience should be involved in making the decisions about care, not merely consulted once the decisions are already made.
The survey is open now to anyone over 18 affected by BPD, anywhere in Australia. That includes people with a diagnosis of BPD themselves, and it includes the partners, parents, siblings, friends and carers who support them. It doesn't matter whether you've taken part in this research before or you're hearing about it for the first time.
The survey takes between 30 and 60 minutes to complete, and taking part is entirely voluntary. If anything in the survey raises something difficult for you, looking after yourself comes first, so take the time you need, and make those connections that are so important. If your usual trusted people aren't accessible, Lifeline is available to listen 24 hours a day on 13 11 14.
The survey closes on Monday 16 November 2026. If BPD is part of your life, in whatever way, we'd be glad if you'd take the time to share your experience. And if it isn't, but you know someone it does affect, passing this on might be the thing that gets their experience counted too.
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