13 min read

When the NSW Health Service Plan for People with Eating Disorders was first introduced, it marked the start of a long process of reshaping how the state responds to eating disorders.

The NSW Health Service Plan was developed in partnership with InsideOut Institute and lived experience, to address long‑standing gaps in the system: inconsistent pathways to care, limited access to specialist support, and a need for hospitals, community teams and services to see eating disorders as core business for NSW Health.

But identifying gaps and proposing solutions is only one part of the equation. The real work of translating the Service Plan into practice happens on the ground, in Local Health Districts through the efforts of Eating Disorder Coordinators (EDCs). InsideOut Institute is pivotal in supporting EDC as they drive change locally, pulling together the system to enable people with an eating disorder to access care close to home.

Just over ten years into this reform effort, it’s important to pause and reflect; to acknowledge the progress made, the challenges that remain, and the people who have been pivotal in driving it forward.

Among them is Monique Van Leeuwen, who recently departed her role as Eating Disorder Coordinator after a decade of supporting Northern Sydney Local Health District (NSLHD) through the rollout and evolution of the NSW Health Service Plan.

To understand what this transformation has looked like from the inside, and what it still needs, Monique sat down with us for a conversation about the system then, the system now, and the work still ahead.

"[The] Service Plan...put eating disorders on the map. It came out as saying that eating disorders are core business, and that we had to do something."
- Monique

InsideOut Institute: Can you tell me a little bit your professional background:

Monique Van Leeuwen: I'm a dietitian by background; around 2013 I was a dietitian working on the general wards at Royal North Shore Hospital, and we were seeing more and more people with eating disorders present to us, but nobody had any idea what to do when people were presenting to or being admitted to hospital.

Many were very medically unwell, and as a dietitian, I was part of the very early discussions in our district around increasing presentations, as we tried to problem solve, asking: what can we do, and how can we make this better.

I was very lucky to then be successful in stepping into the Eating Disorder Coordinator role in 2016, so over ten years ago now. I've been in the position ever since and watched it grow and expand from me and only me, to now a team of over seven staff.

We've been very, very lucky in Northern Sydney to have the ongoing support of our executive, and to receive some extra funding to be able to expand and improve care for people with eating disorders. So, that's how I came into it; I was clinician on the ground saying ‘we need to be able to do better for these patients,’ and I had a rare opportunity to actually step into a role and make some change, which is pretty amazing.

IOI: Definitely amazing. So, you would have a broad understanding of the system and what it looked like before and after the implementation of the NSW Eating Disorder Service Plan. What did care within the system look like before this plan?

MVL: In my opinion, it was non-existent to be honest. We had people presenting to hospital for care, quite medically unstable, and a lot of them were turned away.

We had reports of people saying “we don't treat eating disorders, you need to go somewhere else.” Care was really non-existent.

For the few that were able to be admitted and receive care, the care that was provided was ad hoc. So, I guess from my clinical experience and my days as a dietitian, we would do one thing for one person and then on other days, the same person would experience something very different. There was definitely no consistency of care.

And I am sure that it was probably was very traumatic, for somebody that's coming into the service and care. Definitely not trauma-informed, definitely not eating disorder-informed care.

The clinicians did the best they could with what resources and knowledge they had at the time, but care probably wasn't anywhere near as good as what it needed to be.

IOI: And I am sure that there were very few avenues for community care.

MVL: Absolutely. I mean, in our area, we were very lucky, and we always have been, to have a very large network of private services; so we're quite lucky in that regard, but if you couldn't afford private, then you were stuck.

And then if you're too complex to fit in the private system, there is nothing else to kind of catch you or pick you up, it was very challenging.

There was no support for clinicians either, so pre-Service Plan, there was no education, no training. There was very limited access to upskill, even if you had a clinician such as myself that was in the area saying “okay, we need to do better, I want to learn more;” there was nothing there, really.

"There was definitely no consistency of care."
- MVL

IOI: What do you think has made the biggest difference over the past ten years?

MVL: Without a doubt, it would have to be the Service Plan. Particularly the first one; it put eating disorders on the map. It came out as saying that eating disorders are core business, and that we had to do something.

As I said before, we were very fortunate to have a very supportive executive, and our mental health director was already wanting to do more work and make changes, so we were already starting to develop a plan before the official Service Plan were released. But I think having a document from New South Wales Health that said, ‘this is something you have to do, this is everybody's business,’ meant that we can no longer say, no, we don't treat eating disorders and that was very powerful.

It also came with coordinator funding, meaning my position was created and I got to step into that so that was a big win, but the education and training from InsideOut that also ran alongside it also made such a difference. Without that training, sure we can write guidelines, we can write policies, we can say yes to opening pathways and say we're treating people, but if clinicians don't know what they're doing, and don't have that support to back them up and provide the treatment for people with eating disorders, then you're not going to have the change in practice.

InsideOut’s training enables clinicians to give the care that people need. So I think that was another really big piece that came with the first and second service plan.

IOI: What about the biggest wins?

MVL: I think for us, locally, we've had so many wins in Northern Sydney, so we've been very lucky to see such change. We have very clear admission pathways into medical settings; we have [emergency department] admission criteria, our emergency is all trained and very aware of the guidelines [that have been] in place for about 5 years now. They know that if someone presents what tests to do, when to be admitted, and who they get admitted under.

It means our pathways into medical care have opened quite significantly. We have one designated ward, oftentimes we have two wards at some places, where patients get admitted, and…all the nurses are trained, the specialists are trained. Again, it's part of core business and that's been a massive change, because it allows for that consistency of care that was missing before.

The best part is, clinicians are stepping into it and doing it themselves. We're not forcing them to do it. They're taking that ownership and caring for patients, which I think is always amazing.

There's still a lot of stigma, as we know, and there's a lot of anxiety and fear around treating people with eating disorders, which doesn't need to be there. But this is changing. Clinicians are starting to say ‘I can do this, I know what I'm doing’, or ‘I know I've got support if I need it’ which is what it’s all about.

"InsideOut’s training enables clinicians to give the care that people need. So I think that was another really big piece that came with the first and second service plan." - MVL

IOI: What about wins in community care?

MVL: Yes, so that's been another big thing for us. Community Mental Health Services are very stretched, but our child and youth mental health services are providing treatment, which is what people need. In Northern Sydney, we now have a specialised outpatient service for adults…that provides public care for people needing eating disorder treatment.

We've really advocated for more funding and have been very lucky in that regard; with that we've expanded the team, so we've got a very comprehensive multidisciplinary team, or as Sarah Maguire likes to call it, a specialist hub! So they can not only provide treatment, but they kind of walk alongside clinicians and support them when they're providing treatment, do a lot of upskilling, or support the transition from hospital to home.

Don’t get me wrong, there's still significant gaps, we're not perfect by any stretch of the imagination, but at least we can say, ‘okay, what does the person need? They need that medical care, great, they can come into hospital. They need more specialist outpatient treatment, great, they can come into our outpatient service.’

So definitely a lot more options for people seeking care, and the level of care is better as our workforce build skills. Certainly, based on the feedback that we're receiving, it is.

IOI: Well, that leads me to my next question, which is, what changes do we still need to see?

MVL: Look, there's quite a few still, but if I'm to pick kind of some key ones, I think we need to look at how we provide more personalised treatment. Whether that's someone with a long-standing illness, where their goals might be a little different. Adapting to that [is something] we're still refining.

I also think that across the board, not just us in Northern Sydney, we don't have a space for people that need a step up in treatment but are not yet medically unstable. I see that as a huge gap. We can see people deteriorating, they need that inpatient care, they may not have private health insurance or be able to afford it, or don’t have access to it for whatever reason and there's nowhere to see them. This is where direct admissions could help so we don’t have to let them get to a point where they're unwell before they come in. As we know, treatment is best in the community, so if we can get on top of that sooner, then obviously we will see better and better patient outcomes.

I think also, just looking at different diagnoses, at the moment we're very good at doing the medical side of, say, anorexia and bulimia, but we're still very new to things like ARFID, or even binge eating disorder. I think, certainly for us, we've got the basics down pat the next phase is looking at how we individualise that and make it better for the person.

Age-appropriate care is the other big thing; making sure treatments match where people are developmentally, and as they transition between services.

IOI: Turning more personally to you now, why did you become an eating disorder coordinator?

MVL: Yeah, why did I?! Because I'm a sucker for punishment! No, it was to change practice. I was working as a dietitian in the area, and we had a big, big gap in care. This was an opportunity to not only make some change but take ownership of that change. And making that change for other people so they could access the care they really needed.

"I was working as a dietitian in the area, and we had a big, big gap in care. This was an opportunity to not only make some change but take ownership of that change."
- MVL

IOI: Looking back, what would you say has been the most rewarding thing about your job?

MVL: I think seeing the change in care is definitely one, but another would be talking to families and consumers and hearing that they're getting the care they need and that the system is changing. To me that is the most rewarding; knowing that we're doing a pretty good job, seeing the patient outcomes, and seeing people get through, get better, and go on to recover from their eating disorder.

Especially knowing that we've come from; like we said, 10 years ago, where they wouldn't even get care or treatment, to now getting quite comprehensive care. Again, not always, I'm not going to say we're perfect, I want to make that clear, but the feedback about the changes we have been able to make is quite positive and that has been great.

IOI: Conversely, what would you say has been the most frustrating thing?

MVL: Hmm, I think it's still whilst there's been a shift in stigma, there's still a lot of stigma and anxiety and sometimes, I guess, unwillingness to treat people with eating disorders.

I think at times, as a coordinator, we still have to fight regularly for the right level of care for our patients, and for me that's frustrating that in this day and age we still have to do that.

Aside from more funding as well which is often the other answer I give! I think the stigma and the complexity of the illness are the hardest parts. It's one of the only illnesses that you'll ever see where people can appear to be quite ambivalent about treatment. Particularly in anorexia nervosa, the illness itself will do everything it can to protect itself that. So that can be really hard for a clinician to wrap their head around.

The other complexity with eating disorders is that there is very much a crossover between mental health and medical care, which again, there's not many other illnesses that need to address both at such high intensity, if that makes sense. That level of complexity is really hard to manage and, can make it hard to provide all aspects of care at the same time.

But it can be done! It can just be frustrating sometimes.

IOI: It sounds like you are leaving very large shoes to fill; what advice do you have to the people stepping into those shoes.

MVL: The biggest thing to say is that creating this change wasn't easy, as you can imagine, and that was with a lot of support,…guidance and willingness from clinicians.

At the end of the day, I always to come back to the person with an eating disorder. We’re here to change the care for them. So, when you're in those moments of going, ‘oh god, what do I do?’ or ‘this is really hard’, that's my advice. Think about the person, and the lives you're going to change. What might be a really small change in the system might make a really mammoth difference for them. Even if you change one person's life and one person's experience of care, that's going to make a huge difference to that person, their family and their loved ones.

That's something I always did, and that's what I would say to anyone stepping into a role like this; we've got to keep people with eating disorders at the forefront of why we do what we do.

We’re fighting for them, really.

"Even if you change one person's life and one person's experience of care, that's going to make a huge difference to that person, their family and their loved ones."
- MVL

IOI: Your absence will be felt by everyone, I am sure! What is in store for you next?

MVL: For now, I'm taking a break and just spending time being Mum to my two little ones which I'm really looking forward to. They're only little so I think spending time with them is what I need. But I'd love to get back into the area of eating disorders eventually, I think it's something that will never leave me. When I first stepped into it, probably like every other clinician, I thought ‘oh, I can't do this’ but now, obviously, I feel very differently about that. So I'd love to come back eventually and continue to change the landscape for people with eating disorders. What that looks like at the moment, I don't know, it's kind of open.

IOI: The last question I have for you is what would you say to patients and families who are looking to receive care and are facing that process.

MVL: That’s a tough one. I think it depends on where they're getting care but more importantly it’s just knowing that it's going to be a hard road, no matter where it is, whether it's coming into an [emergency department] that's busy and chaotic and scary, or an outpatient service, or an inpatient ward where you do lose a bit of control over care, treatment and autonomy. As much as we try and prevent that, there are some aspects due to life-saving treatment that needs to be done.

But you've got to keep that hope. As clinicians, we have to keep that hope for you as well, but you also need to keep it in yourself. We are here to help you, to walk alongside you, and help you recover. We know recovery looks different for every single person with an eating disorder. We're here to make sure that people are safe and that we can help you achieve those goals.

Last thing I would say to people is to keep advocating for yourself. We're in a world where, while lots has changed, there's still a lot of stigma and a lot that hasn't changed out there. So you need to continue to advocate for you and yourself through all of that, but there's a lot of hope, and there are a lot of really great clinicians out there that are advocating in your corner.

And I think it'll just keep improving!

IOI: Monique, thank you so much. It was amazing to chat with you, and thank you for all of the work you have done for those living with eating disorders.

MVL: Wonderful! Thank you for speaking with me, I feel very honoured.