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‘My voice has power to change things’: designing personality disorder care that treats people like people

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Kelly is a Worimi and Wipella (Wadjella) woman who lives and grew up on Whadjuk Noongar Boodja. She has a keen interest in promoting human flourishing and bringing lived experience into all aspects of service design. She sat down with SANE to chat about her experience co-designing a new model of care for personality disorder.

How did you get involved in service and system design?

My first engagement beyond advocating for my own care was at the hospital where I'd first been diagnosed with emotionally unstable personality disorder (EUPD). One of the psychologists doing her thesis on a program there asked me to take part in the qualitative part of her research.

My feedback ended up influencing even how she did the quantitative stuff. I thought, “Oh, my voice has power to change things”.

What was your role in co-designing the WA Statewide Model of Care for Personality Disorder?

Co-design is a design process undertaken by a community in a collaborative manner. It’s basically where all the people who are engaged in ‘the thing’, or using ‘the thing’ in some way, are actually the ones doing the design of it.

So, for the Statewide Model of Care for Personality Disorder, I was taking clinicians and people with lived experience through a design process to create the new model of care.

What are your strengths in the co-design process?

I can bring my own lived experience to the lived experience group.  I’m not another power person, I can be like, “Yeah when I was using that service that was also the case for me”, so it leveled the power dynamic, which created trust.

The relational aspect of personality disorder is often talked about as a really negative thing. But for me that intense, ‘I care about this’ and ‘I care about people’ means when I get fobbed off, I’m like “No, no, I don’t think you understand”, which is a strength in a lot of situations.

I was diagnosed with autism and attention deficit hyperactivity disorder (ADHD) two years ago. A lot of the peer discourse online is about the strengths of diagnoses of Autism and ADHD, and the research is still to catch up. So, like – I'm really good at focusing. If you need to know nuance on something and I care about it, I will find it for you.

I think those three diagnoses of EUPD, ADHD and autism together say something to me about my ability to think in ways that people don’t usually think.

Also, because I’ve had to find ways to get myself to fit with the broader population, I’m also pretty good at adjusting the way I am depending on who I’m around. Now I’m able to do that in a healthy way.

For example, I’m able to use ‘clinician speak’ and often able to do ‘policy speak’ which is almost a third language. So I’m able to do a bunch of translation, because I have to translate what’s going on in my head anyway to people.

Knowing I need flexibility also allows me to grant other people flexibility. You know that golden rule: treat people the way you’d like to be treated.

It also means that I do things like having sensory items on the table in design workshops. For different design exercises I have options that people can draw on, but I also have clay and pipe cleaners and will record people talking about what they’ve made.

And I work differently day-to-day. So just because something works for someone one time, I don’t come with the expectation it will work for them every time.

What were you most proud of in that process?

I think it was more that I felt honoured to be a part of the insights from the system and people involved.

The insights I developed from the lived experience team were so amazing. About half-way through the process, I was like, “What other work have you done in the co-design space?” and most of them were like, “This is the first thing I’ve done” and I said, “Wow, you are so good at this”.

And watching clinicians be like, “Oh, this is why we work with lived experience, maybe I should engage that more in my own practice”.

And seeing a clinician from an academic background who only felt comfortable to a limited degree with self-disclosure change – to now he brings his own experience of vulnerability to how he delivers therapy.

Him seeing and hearing others say how valuable it was when a clinician disclosed, for example, helped him feel more comfortable bringing his vulnerability and smallness to therapy – he doesn’t always have to be a ‘big’ person. It’s not just the co-design process that did that, but I do think it was a catalyst.

What was an interesting insight from the co-design process?

One of the things we often experience within system design, is that the difficulties you find within your design team and their relationships with the design project are often a reflection of what’s going on in the system.

So in the personality disorder system design process there was a real splitting between, “We’re doing it right and they’re doing it wrong”, which is something so often happening for someone with a personality disorder. But it also often happens between someone with a personality disorder and their clinician. We were hearing this ‘splitting’ also happens between clinicians and managers, and then the managers and the system.

What makes good care for people with personality disorders?

In some ways it's so obvious right? It’s the principles underlying the ‘Positive Culture of Care’, which someone from the Mental Health Commission said sounds like a description of having a good cup of tea with a friend.   

You need to be hope-filled like you are with your friends. You need to be compassionate and flexible and empathetic and non-judgmental and reliable, like you are with your friends.

Part of the reasons that we need to talk about culture is that you can’t just expect the on-the-ground clinicians to act like this when the people who support them aren’t acting like this, and the people supporting them aren’t acting like this.

You also need consistent, stable funding, that is long term and allows time for building relationships, because clinicians know what to do, they just don’t have the time to do it.

Everything is so intense for people with personality disorders, which means it’s also really intense to work with people with personality disorders. So if you can make it safe for people with personality disorders and people working with people who have personality disorders, it’s going to work for people with similar but perhaps less intense experiences.

You need a culture that is about building trust and relationships, between clinician and patient, clinician and manager, manager and services. If it works for people with personality disorders it almost certainly works for everyone else.

Basically, if we treat people who use services, and their support people, like people; and we treat the clinicians, managers, and people who control the funding like people: we’re all going to have a better time.

Where to from here?

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