‘The hardest point in recovery’: the long wait for eating disorder treatment

Lifestyle changes and Covid anxiety have caused a spike in eating disorders, and services are stretched. New treatment is on its way, but timing is crucial

Pheobe Ho of Como, a suburb of Perth, knows the power of the eating disorder voice. The 24-year-old had been struggling with anorexia and bulimia for eight years when she relapsed and was admitted to hospital. After being discharged, she was faced with a months-long wait for psychological therapy from the outpatient service.

“The eating disorder will do everything in its power to justify why you shouldn’t be seeking treatment,” Ho says. “So, if the treatment is not available, it feeds into that. ‘See?’ it says, ‘you don’t need support services, you’re not unwell.’”

“That’s the hardest point in recovery.”

Eating disorders have one of the highest mortality rates of all mental illnesses in Australia. Before Covid, there were already around 1 million Australians affected by an eating disorder, but according to Sydney University’s new eating disorder research centre, the InsideOut Institute, just 200,000 receive evidence-based treatment. Since Covid, things have become worse.

According to a study conducted by researchers at Swinburne University during the early stages of the pandemic in April 2020, there was an increase of more than 60% in reported restrictive eating and a 30% increase in bingeing behaviours in those with a history of eating disorders. It also reported a 30% increase in these behaviours among people with no history of disordered eating. A study published last September found a doubling in the diagnosis of eating disorders in children in New South Wales and Victoria from the onset of the pandemic. Across the country, eating disorder helplines are getting large spikes in calls and medical services are seeing up to double the usual demand – causing already long waitlists to blow out, according to experts who spoke to the Guardian.

Changes to everyday routines, isolation, focus of the media and conversations about food and body weight during lockdowns can have a devastating impact on those already with an eating disorder and on others who have not previously reported any such problems. Isolation can be a friend to disordered eating, says Dr Elizabeth Crouch, a Victorian GP with a special interest in eating disorders.

But, in all of Australia, there are fewer than 40 public beds dedicated to eating disorders and around 120 private ones, according to eating disorder charity the Butterfly Foundation.

Those working in the field are concerned about the lack of services to meet the growing demand, particularly at critical transition points, such as from acute care – as provided in hospitals – to returning home.

“When that person is discharged into the community they will find it very difficult to access any form of intensive therapy, particularly now with the impact of Covid,” says the Butterfly Foundation CEO, Kevin Barrow.

All this waiting time gives the eating disorder voice the chance to take hold of a person’s thinking patterns again.

After Ho was discharged from hospital, in her mind, she continued to have an eating disorder but with her weight restored, her body no longer reflected that. Her mind and body were out of sync. Her eating disorder was telling her to go back to that comfort zone where they match up again; to starve herself again.

“The incongruence between your thoughts and your physical health can be very distressing to a person recovering from an eating disorder,” she says.

Without support to help overcome those unhealthy thoughts, the road ahead can look too hard.

“That’s the point where a lot of people end up going, I can’t do it anymore, I’m just going to go back to where I was,” says Ho.

It is why the illness is so hard to treat. It takes a skilled clinician to work with a patient who may be ambivalent about getting help for their illness and the need for recovery.

“For an illness with such a high mortality rate, there’s not enough time devoted to training for GPs,” says Crouch. Being the first line of medical intervention, GPs play an important role in diagnosing the condition. If it is missed, or dismissed, there can be a long delay in that person seeking help again. And that help needs to be the right sort of help.

“An eating disorder is almost like being in a cult – you need to be brainwashed out of it. Treatment requires time and intensity,” says Crouch.

Treatment may include evidence-based therapies such as cognitive behaviour therapy or family-based therapy, involving coordination of multi-disciplinary care, which can achieve good outcomes.

New facilities

There’s no doubt we need more of the services that we already have, says Prof Tracey Wade of Flinders University, a clinical psychologist and one of Australia’s foremost researchers in eating disorders. But for this complex mental illness, she says, we also need a range of weapons in our armoury.

In early 2019 the federal government announced $63m funding for six purpose-built residential centres across Australia. Separate funding of $6m was granted to the Butterfly Foundation to build and operate its own such facility. These centres will be the first eating disorder-specific residential treatment centres in Australia, aiming to create a home-like environment so that participants can model recovery when they return home and hopefully avoid that revolving door of hospital admissions.

The Butterfly Foundation’s Wandi Nerida centre, which opened in July, is the first such centre to be built and is set on 10ha on the Sunshine Coast. The centre has 13 beds and it, too, already has a waiting list.

Wandi Nerida opened in Queensland in July, the first of a number of planned residential centres in Australia to exclusively treat eating disorder patients.
Wandi Nerida opened in Queensland in July, the first of a number of planned residential centres in Australia to exclusively treat eating disorder patients. Photograph: Wandi Nerida

Federal funding for the six centres will go to NSW, ACT, Western Australia, South Australia, Tasmania and Victoria to scope their own facilities, which will likely have a similarly limited capacity. South Australia’s centre is expected to be the next in line, and unlike Wandi Nerida’s expansive bush setting, will be located at the Repat health precinct near the Adelaide city centre, close to other support services and networks, and run by the state. Plans have been drawn up, but it will be another 18 months to two years before it is built. The others are still in the consultation stage, but at least some may more closely resemble the South Australian plan rather than Wanda Nerida – being close to other facilities and operating as public centres charging no fees.

The basic overarching guiding principles, though, will be the same for all. Participants must be medically stable, the facility should be home-like and operate like a community, with participants preparing and eating meals together, and some of the staff will have lived experience.

“It’s not necessarily a last resort,” says Jodie Ashworth, the executive director of Wandi Nerida. “But people have normally tried some sort of community treatment and found that it’s not been intense enough for them to be able to achieve recovery.”

The centre’s approach is founded on an evidence-based holistic model of care used in similar private centres in the US. Both participants and staff have a responsibility to each other to promote and ensure people stay on their recovery path, replicating siblings in the home environment. A phased individualised treatment plan with a longer time span than what is usually covered by private health funds is aimed at achieving full recovery.

“It is about learning how to control those unhealthy urges so that the healthy self becomes more prominent than the eating disorder self,” says Ashworth.

The cost for the average 60-day stay is in the vicinity of $70,000.

“Certainly, cost is a large barrier to access treatment for eating disorders,” says Ashworth.

Since the facility opened in July, every participant has received some level of bursary from the Butterfly Foundation, ranging in 10% to 98% financial assistance towards the cost of their stay, but this fee relief is dependent on private donations. It is hoped that the state government will fund some places at the facility to enable public patients to stay.

Barrow argues that the cost is in line with the daily rate of a dedicated mental health bed in a public hospital, but says given the value of the investment, evaluation of these centres will be important to assess total outcomes relative to the cost.

Being a new approach to treatment in Australia, an important aspect of the centres will be the gathering of data to assess their effectiveness, says Wade, who has been involved in the development of the model of care for the South Australian centre and is on the technical advisory group advising other states on their models.

“I have no reason to think they won’t be effective, but as with any sort of treatment, including our outpatient treatment, the question is who are they most effective for?” Different treatments work best for different patients, says Wade. “You have to start with the individual.”

But for an individual sitting on a waiting list, any help is better than nothing. Wade believes waitlists for care can be cut by redirecting some resources to quick affordable options where appropriate. An early assessment followed by provision of information about the illness and guidance about how to manage nutrition at home may be all that’s needed for some, rather than the full gamut of treatment, she says.

Wade believes that the therapies we already have are effective, there just needs to be more thoughtfulness in tailoring them to suit the individual, reviewing often and increasing intensity where needed. Once an approach is adopted, then the aim is for early impact, knowing that the longer this illness takes hold the harder it is to treat.

In the end, any treatment comes down to giving someone hope – which is what propels a survivor like Ho.

Availability of services offers that hope: a skilled clinician, firm but empathetic, who believes in you, or those words of your ward nurse to aim for progress not perfection. Hope, too, can be found in a person with lived experience showing you that recovery is possible. Ho’s journey was long but she is now on the eve of graduating as a clinical psychologist, eager to help others grappling with an illness that can be a formidable opponent.

“When I was in the depths of my eating disorder I felt so stuck and hopeless, I thought I was never going to get better. Having a clinician that can offer you just that glimmer of hope can be so powerful. That’s my mission now, to do that for others.”

• In Australia, the Butterfly Foundation is at 1800 33 4673. In the UK, Beat can be contacted on 0808-801-0677. In the US, the National Eating Disorders Association is on 800-931-2237. Other international helplines can be found at Eating Disorder Hope

Sarah Hender

The GuardianTramp

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