Professor Andrew Chanen is the Deputy Director of research at Orygen: The National Centre of Excellence in Youth Mental Health, Board Director of NEABPD Australia and the President of ISSPD (International Society for the Study of Personality Disorders). He is the keynote speaker at the 5th annual National BPD Conference “New Directions – New Opportunities.” He was kind enough to give us some time recently to talk about the role he and Orygen have played in BPD research.

In 1999 Orygen established a program called Helping Young People Early (HYPE). ‘We have a model of care that involves two levels of service,’ Chanen says of the program. ‘One of them is a general model of early intervention, and that involves training people in the rationale for early intervention and includes a service model and general psychiatric care; family involvement; case management… and then we have a second stage of training which trains people in a particular form of individual psychotherapy which is called Cognitive Analytic Therapy, or CAT.’ HYPE was the first program of its kind internationally and received the Australian and New Zealand Mental Health Service Achievement Awards Gold Award in 2010 and The Victorian Premier’s Health Service Awards for Advancing Healthcare in 2012. It has also been exported to centres overseas. ‘I’m heading off to the Netherlands to do some training,’ Chanen says. ‘There’s a HYPE program established in the Netherlands and they’re looking at developing a national program which would involve skilling-up services in other centres in the country.’

HYPE has been a breakthrough program in diagnosing and treating young people with BPD. ‘The main kind of task that we faced originally was actually getting [clinicians] to make the diagnosis in young people because, despite all the scientific evidence, making the diagnosis is still fairly controversial.’ Early diagnosis (or “early intervention” as it is sometimes referred to) in BPD has been a divisive topic in the field for a multitude of complex reasons. ‘People involved in the care of young people are reluctant to give them a diagnosis that might well expose them to stigma and particularly to discrimination in health services,’ Chanen elaborates. ‘We [Orygen] think the diagnosis can be applied in young people around about from the age of twelve; essentially, people from puberty onwards. The cutting edge of research into diagnosis is looking at the features in children, but we think it’s premature to make the diagnosis [then].’

This controversy that surrounds BPD early diagnosis isn’t unique to Australia. ‘In some countries early diagnosis is never made and people are kind of frowned upon if they do make it. In the United States, it’s a highly controversial diagnosis. Partly because the insurance companies don’t cover BPD, and so in order to get care, clinicians will often make substitute diagnoses,’ Chanen explains. ‘Then they’re likely to be started on medications that are actually ineffective, and that risk harming the patient. In other countries… there’s a more positive culture. In the Netherlands, there’s much more of a propensity to make the diagnosis to not discriminate against those patients, so it’s no accident that they’ve taken up the HYPE program without too much controversy. It really varies enormously across the globe. The community tend to stigmatise people with mental health problems in general, but actually the worst forms of stigma for people with BPD come from professionals who should know better. There are isolated pockets around the world of good practice…some countries are better than others, but on the whole, it’s a universal problem.’

But educating clinicians in their training is just one part of addressing and correcting this stigma. ‘We know that education can change attitudes but we don’t know whether it changes behaviour,’ Chanen illuminates. ‘One of the important areas of research is to actually develop programs to change the behaviour of [clinicians] because you can get people to change the way they speak about patients, but we don’t know whether any of these training programs actually change the behaviour of people. It’s challenging… it’s like telling people that ‘racism is unacceptable,’ and people can learn that racism/bigotry is unacceptable, but when they’re in the privacy of their own home they still may say those things, you never know. It’s the same: you can get [clinicians] to say what they think you want to hear at the end of the training program, but whether they actually go away and change their behaviour towards patients, well that’s another issue.’

But the future for early diagnosis in BPD in Australia is looking positive. ‘When we began this work it was seen as highly controversial. Now younger clinicians we train don’t seem too fussed about it. If we say ‘this is controversial,’ they often say, ‘well we don’t think it is; we’re happy to make the diagnosis.’ So there’s definitely been a generational change in the time I’ve been doing this work and it’s less controversial making the diagnosis now… But you know that’s really just the first step because then you’ve got to skill-up the workforce to be able to effectively treat it once they’re willing to [diagnose] it.’

Given this positive step forward in early BPD treatment, we asked Professor Chanen what his address at the New Directions conference will focus on. ‘The kinds of things that we need to focus on in the care of people with borderline personality disorder,’ he responds. ‘I’m also going to talk about some of the future challenges, which include making sure that what we measure in terms of the outcomes of treatment focuses much more on things that matter for the people who have the disorder. Like functioning: whether people can manage relationships and have a vocational pathway in life that they value, and more and more asking individuals with BPD what’s important to them in terms of their outcomes…. And the reason for that is that there’s a lot of scientific evidence now to show that these “functional” outcomes are actually the real long-term disability that people with BPD suffer, particularly things like unemployment, social isolation, and lack of supportive and confiding relationships… One of the problems is that people with BPD have been assumed to not know what they want, whereas actually when you ask them they’ll often tell you what they want, and the difficulty is that the mental health system – and the health system more broadly – has not been set up to ask them what they want and need, or help them to get it. Mostly a lot of effort goes into trying to avoid providing services to people with BPD by rejecting them and discriminating against them rather than getting on with the job of actually offering them effective treatment.’

Professor Chanen said he also wants to discuss addressing the common symptoms of BPD. ‘Like depressive symptoms, psychotic symptoms, and physical health problems. People with severe personality disorder have almost a 20 year reduction in life expectancy; they have a suicide rate of around about 8-10%; [have] high rates of smoking; very high rates of obesity (and as a result are at risk of cardiovascular disease); and they also end up on a lot of medications that aren’t very effective, but because people feel desperate they often prescribe them, or patients often ask for them.’ This last point Chanen made links back to his earlier comments on ineffective medication potentially being harmful to patients. Surely early intervention of the disorder is a means to prevent this happening in the future? ‘We have research evidence to show that up to 2 years after they’re diagnosed, that they improve significantly. But we actually don’t have enough research to know whether early intervention leads to long-term, positive outcomes decades down the track. We’ve certainly been trying to get funding to follow-up our patients long-term, but we haven’t succeeded in doing so yet… Then the other thing that I’ll talk about [at New Directions] is how to improve access to treatments; how to increase the variety of available treatments; and also how to develop the workforce that is needed for effective intervention for BPD.’

Given the information Chanen has given us, the future of BPD early diagnosis is one that calls for more public awareness and the eradication of stigma. ‘I think that BPD is unfairly discriminated against, and doesn’t get the attention that it deserves,’ Chanen affirms. ‘It has a high suicide rate; is a stronger predictor of being on the disability pension than either depression or anxiety; it has major adverse outcomes in terms of relationships, work, health… and yet it doesn’t nearly get the attention that it should. And it’s very hard to get my colleagues to prioritise it in their research because of this issue of stigma and discrimination… And I think that at Government level, policy-makers aren’t really that aware of BPD and the effect that it has on individuals in the community.’
‘It’s an important challenge and we think that it’s one that should be a priority for workforce development across Australia and internationally. So that’s why we do the work that we do.’

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