People with a diagnosis of borderline personality disorder and their carers report experiencing discrimination and stigma when presenting to health services following self-harm or a suicide attempt, leading to inadequate treatment and care for suicide prevention, say authors of a new large-scale review.

Researchers at Flinders University are calling for better use of existing resources to improve health and community-based services and staff training, which would not only boost the health and wellbeing of all Australians but significantly contribute to a reduction in emergency department presentations and hospital admissions.

Led by Pauline Klein, a Casual Academic and PhD Candidate in Flinders University’s College of Medicine and Public Health, the research team undertook a review of the international literature to investigate people with a diagnosis of borderline personality disorder, their carers, and health practitioners’ experiences of health services.

“Our aim was to identify any challenges, gaps, and barriers in health services and supports, as well as recommendations for addressing these issues,” says Ms Klein.

Borderline personality disorder affects one to two percent of the global population but has high rates of self-harm and suicide, leading to frequent presentations to emergency departments and mental health services, the review found.

“Unlike schizophrenia, borderline personality disorder is much less likely to respond to medications, with previous research finding longer-term solutions, such as face to face therapy and ongoing support, better suited to manage the underlying trauma that is thought to have led to the disorder for many of the people who experience it,” says co-author Dr Kate Fairweather, a Mental Health Epidemiologist and Public Health/Health Equity Lecturer at Flinders University.

The review identified significant structural problems in the health system for people with a diagnosis of borderline personality disorder and their carers, including the limited public health services and community group programs available to meet the urgent demand for support.

“We found that the available public health services and programs have long wait lists, and specialist services are not an affordable option for many people with a diagnosis of borderline personality disorder and their families,” says Ms Klein.

“Similarly, health practitioners reported experiencing challenges navigating health services and referral pathways, due to the limited services and supports available.”

The research further suggests that there is a dominant stigmatising culture, particularly in emergency and acute mental health services, that perpetuates misconceptions regarding the legitimacy of the diagnosis of borderline personality disorder as well as its treatability and recovery prospects, leading to reluctance among some health practitioners to diagnose or treat people with this mental health condition.

“Alarmingly, there are consistent reports in the literature indicating that when experiencing a suicidal crisis, people with a borderline personality disorder diagnosis and their carers are treated disrespectfully and denied treatment when presenting to some health services, leading to a lack of support being offered to these patients at a pivotal time when crisis intervention is needed,” says Ms Klein.

“The Clinical Practice Guidelines for the Management of Borderline Personality Disorder, developed in 2012, state that treatment for this disorder is a legitimate use of healthcare resources and that having a diagnosis of borderline personality disorder is never a reason for withholding healthcare to a person.

“These stigmatising experiences lead to patients and their carers facing discrimination and high levels of anxiety when seeking treatment because the presenting condition is not taken seriously, undermining patient care and potentially retraumatising and exacerbating patients’ self-harming behaviour.”

The authors say the results of the review echo existing structural problems impacting other areas of the health system and provide further evidence of a critical need for health reform.

“This should serve as a call to action for governments to prioritise and address these important public health concerns,” says Ms Klein.

“We need a system-wide approach including providing health practitioners who work with people with borderline personality disorder ongoing access to education, training, and supervision to better support them in their role.”

The paper ‘Structural stigma and its impact on healthcare for borderline personality disorder: a scoping review’ by Pauline Klein, Kate Fairweather, and Sharon Lawn is published in the International Journal of Mental Health Systems. DOI: 10.1186/s13033-022-00558-3.