A one-stop eating disorders clinic will be opening in Perth in December, due to the commitment of a dedicated band of local clinicians.
By Suzanne Harrison
Based on the core belief that food is medicine, Perth is now home to the Esus Centre (esus is Latin for ‘eating’) a multi-disciplinary centre dedicated to treating, managing, and over time, providing integrated research into eating disorders (EDs).
Opening in early December in Subiaco, the motivation to develop Esus was to provide a better model of care for an increasingly prevalent health issue, which drew together Dr Urvashnee (Vash) Singh, a psychiatrist specialising in EDs, Dr Susan Cann, a general practitioner with an interest in EDs, and Kerry Mairs, a clinical psychologist also specialising in EDs.
This small yet determined Perth-based group started out with a shared goal to provide a place where treatment was across the board – not siloed over various locations – where there was a welcoming, central focus for patients and their families, and step-up, step-down treatment. It is mostly directed at early intervention.
“The reason why we have come together really is driven by working in the field and understanding what the limitations are,” says Dr Singh. “What we are about is early intervention, picking up on emerging EDs and dealing with that quickly, which will involve intensive treatment programs, and others that are less intensive day programs, plus a consultation arm.”
It was the clinicians’ unique decision to elongate their already long work hours to build Esus, travel to observe and learn about the advances in ED care in other countries, wear many hats as not only medical professionals but business founders, and utilise their own funds to create Esus.
Finding an appropriate building, negotiating with the landlord, dealing with fit-out, finding staff – this has all come down to the hard work of the three, alongside project manager Jennifer Paterson, with the result being primarily a ‘day hospital’ (its official definition) offering regular and ongoing programs, GPs who deal with EDs (including Dr Cann), psychiatry, psychology, and allied health services, such as dietetic, occupational therapy, physical therapy, and social workers.
Esus’ day programs cater for ages 16-plus, but any age can access outpatient specialist services required for an ED.
Esus is also a place to gather information about EDs – and program, patients and outcomes will be evaluated for future information and research, providing greater understanding for generations to come. In other words, Esus offers a one-stop-shop treatment and work-in-progress research centre.
Seated in one of Dr Singh’s treatment rooms in Nedlands prior to opening, Ms Mairs, Dr Cann, Dr Singh, and Ms Paterson form a powerhouse of experience and an impressive intent to do better. The only one involved who isn’t a clinician is Ms Paterson. She does, however, have recent lived experience of helping her daughter navigate through an ED and, thankfully, come out the other side.
It’s obvious upon meeting, the four have forged a bond during this exhaustive process. There is a relaxed rapport as they agree on their vision and model of care, and what they learnt when travelling together to London for an ED conference to research how EDs are now being tackled in other parts of the world.
Their collaboration forms the ideal multi-pronged approach to what is clearly a perfect storm of a disorder, triggered by various factors and/or other personal interactions which is best treated with input from different areas of expertise.
Good timing
The new centre could not be arriving at a better time. According to the Butterfly Foundation, a national charity which also coordinates the National Eating Disorders Collaboration (NEDC) for the Commonwealth Government, more than one million Australians were affected by EDs in 2022. Women and girls are more likely than men and boys to suffer from an ED or disordered eating, though over a third of people with EDs are male, but the foundation believes this could be much higher, as their experiences may be overlooked or misdiagnosed.
The foundation says types of EDs include anorexia nervosa, bulimia nervosa, binge eating, and avoidant/restrictive food intake disorder, among several others. Globally, 55 million people experience an ED every year, similar in numbers to substance abuse and higher than autism spectrum or bipolar disorder. In 2022, the total social and economic cost of EDs in Australia was estimated at $80.1 billion.
The cause of the onset of an ED is not just one thing. As the NEDC explains, “the elements that contribute to the development of an eating disorder are complex, and involve a range of biological, psychological and sociocultural factors”.
Complex triggers
An individual’s susceptibility is best understood as an interaction between these factors, and the presence of risk factors will vary from person to person.
“Compelling evidence from family and twin studies indicates that a strong genetic component influences the development of eating disorders, in particular anorexia nervosa,” the NEDC said. “There are biological and genetic, psychological and behavioural, and socio-cultural factors which may increase the vulnerability to developing an eating disorder.”
Therefore, it is how EDs are approached, understood, researched, and treated that will make much-needed changes, particularly when there is still so much misunderstanding in the greater community. Having a centre such as Esus will make major inroads into doing just that.
For successful treatment of an ED, it is vital that comorbidities also be considered. EDs are “frequently associated with other psychological and physical disorders, such as depression, anxiety disorders, substance abuse and personality disorders”, the Butterfly Foundation adds.
“What I’ve found about EDs is that they are where these two things meet (the mental and the physical), and we can’t continue to ignore that,” Ms Mairs says. “Esus has the ability to do this, all in one centre.
“The home-style kitchen at Esus, for example, really sets us apart. All our day program (patients) will have supportive eating … whatever is on site at Esus, the patient needs to be made to feel at home.”
Esus brings related practitioners into one system for treating ED patients as well as educating and informing their families, removing the need for them to chase information from various areas.
“There’s a sense of everything and everyone adding value (for patients) and collaborating for the most beneficial outcome,” Dr Singh says.
And WA needs more services, says Dr Cann.
“Our model is really recovery focused and aimed at early intervention with a holistic approach. Our understanding of EDs shows us it is possible to reverse the disorder and return a patient to their full potential,” she says.
Keen interest
Because of the need for a new model of care, the clinicians agree there has been a hugely positive reaction to Esus’s opening and work is being done to collaboratively work with the public sector.
The centre also comes a few months after the federal government announced its latest 10-year strategy on EDs, developed by the NEDC and described as a “call to action and a roadmap for people who care about Australia’s reaction to and are responsible for improving Australia’s reaction to eating disorders”.
It is designed to guide sector and policy development for the next decade and is based on information gathered not only from clinicians, researchers, public health experts and community providers, but also those with lived experience.
This last cohort involved is a breakthrough, as for many of those living with an ED (or the families of those with an ED) there is often suffering in silence. Misunderstanding, old beliefs and lack of information to the broader community has resulted in an element of shame surrounding EDs.
The Butterfly Foundation says that “stigmatising views” still surround EDs, with one in four Australians believing EDs are a choice and view them as a “sign of weakness”.
Ms Paterson knows this only too well, making her involvement in Esus not only invaluable, but reflective of the government’s new 10-year approach. She has also moved beyond the silence and spoke candidly to Medical Forum about her daughter, Ruby, and her struggles with anorexia nervosa.
“When we got the diagnosis, we thought, what are we going to do?” she says. “We looked at all the options – do we sell the house and go to NSW, the US? But we realised, this is our home, and we are going to use what we’ve got here.”
But without a single entity such as Esus, the family was run off their feet visiting separate clinics, a situation that could be avoided with an integrated service. (She is quick to point out she’s a proponent of the supportive nature of the Eating Disorders Families Australia – EDFA – and the work that they do, and later became involved in fundraising and information-sharing with the parent-founded group).
Life consuming
Terrified for her daughter, Ms Paterson gave up her then new job and looked after Ruby full-time. She regularly slept in her daughter’s bedroom to make sure she wasn’t sneaking out to go for a run, as like many anorexia nervosa sufferers, exercise can become obsessive.
Mealtimes were carefully managed and prepared. The entire family had to change their mindset to focus on ensuring Ruby’s recovery.
Ruby did visit hospital but didn’t recover; she was angry she was being forced to eat. Pointed in the direction of a different GP, Ms Paterson says that changed everything. This GP empowered Ruby.
“She was someone who would hold our hand, but she also said, ‘you’ve got this’.”
“Although services were limited, we knew the only way forward was to give it all we had. It was an unimaginable journey from community-based care to family-based therapy then repeated hospitalisations, a day program, weight restoration and finally – recovery,” Ms Paterson told the EDFA in a personal carers’ story.
It took two years, and now Ruby has finished school, is studying in the East and doing well.
“We got in quickly and we got out quickly. Everything revolved around Ruby. EDs are so sneaky. We had to set a lot of boundaries, and if the clinicians were not on the same page, ED sufferers will work out ways to falsify their weight, for example. Our strategy was to get rid of that ED voice and not back out.”
Yet Ms Paterson says they were lucky she could focus so much attention on Ruby. She also had a supportive family and could access private care when needed. For many other ED sufferers, clearly not enough is being done, and “we need to think differently”.
COVID was not kind to people with the potential to suffer from an ED, either. The Butterfly Foundation reports a 63% increase in calls to its helpline compared with the year prior to the onset of the pandemic. Of course, disrupted social support networks and access to treatment and support were an additional stressor.
“We have been inundated by patients since COVID,” says Dr Singh. “Systems are stressed. Schools are stressed. The launch of Esus is as a huge positive because there is a sense that we are being left behind (in WA particularly). Esus allows everyone to add value – it’s collaborative and therefore benefits everyone.”