Appetite for recovery

Kristie Amadio says that when it comes to eating disorders, the emphasis needs to be on full...
Kristie Amadio says that when it comes to eating disorders, the emphasis needs to be on full recovery. PHOTO: LINDA ROBERTSON
Eating disorders are on the rise and delays in treatment are proving deadly, say those calling for action. Tom McKinlay reports.

The twiggy looking addition to the side salad is not food, Kristie Amadio decides.

It’s a fair call. It doesn’t look very appetising — lots of stick, too few leaves.

No biggie though, it’s a very small part of what’s in front of Amadio and the rest looks delicious. Chicken pie, disappearing rapidly.

It’s an everyday interaction with cafe food and unremarkable. But things were not always so straightforward for Amadio. Once every meal came festooned with red flags, back when she was in the grip of an eating disorder.

Though she is far from finished chewing over the subject of eating disorders, today nothing on her plate holds any fears.

That’s the way Amadio is determined it should be for everyone.

Determination is kind of what she does.

Back when she was wrestling with that eating disorder — while simultaneously competing on the world stage as a weightlifter — she was determined it would be the best eating disorder ever. So determined was she, it nearly killed her.

In that, Amadio was, for once, not exceptional.

Because eating disorders kill lots of people. The mortality rate for people with eating disorders is the highest of all psychiatric illnesses, and more than 12 times higher than for people without eating disorders, according to the Eating Disorder Association of New Zealand (EDANZ) . Not that starving to death is the biggest risk. No, the biggest risk for people with eating disorders is suicide.

It has been that bad for a long time, then Covid-19 appears to have made it worse.

Over the course of 2020 there has been a doubling of New Zealanders requiring help for eating disorders, EDANZ calculates, and in some instances three or four times as many people requiring specialist services. Four times as many people are calling EDANZ’s 0800 number.

Last month an emergency hui was held to try to find a way forward.

More than 100,000 people in New Zealand have an eating disorder, Amadio says between mouthfuls of the chicken pie.

"Seventy percent of those are estimated not to get the amount of care they need, or to not even get care.

"If that was cancer it would be a different story, I think," she says.

Amadio’s prescription is a residential programme, starting in Dunedin, where people will be placed squarely on the road to recovery, before being gently stepped back into their lives in the world; from residential care, to a day programme, to a partial programme.

It is what worked for her and the sort of work she’s been doing in the US and elsewhere since.

Amadio’s eating disorder kicked off when she was 14. By the time she was 18, she had been twice admitted to an inpatient ward in Australia.

She returned home more stable but had no idea what to do in order to fully recover.

So the illness dragged on and she was told at age 27, having had an eating disorder for more than a decade, she was chronic and should expect to never fully recover.

Desperate and depressed — struggling to get through a single day — Amadio found a residential programme in the US, for $US1200 a day. It took her seven months, her savings and a sizeable contribution from her parents. But she made it. To a full recovery.

Going to the US, though, can’t be the solution, Amadio says. That level of treatment needs to be available here.

The organisation she is establishing to deliver it is called Recovered Living NZ.

The plan is to lease a five- or six-bedroom home in or near Dunedin to use as a residential and day treatment centre, for a couple of years, while a home-style facility is purpose-built. She’s looking at properties now and open to both philanthropic and government support.

Last month’s emergency hui was organised by EDANZ.

EDANZ chairwoman Nicki Wilson is calling for a sector-led specialist panel, supported by...
EDANZ chairwoman Nicki Wilson is calling for a sector-led specialist panel, supported by government, to look at what can be done. PHOTO: SUPPLIED
Chairwoman Nicki Wilson says health services cannot meet demand and children as young as 8 are waiting weeks, sometimes months, to be seen for life-threatening eating disorders such as anorexia nervosa.

That increase in demand is not yet showing up in Ministry of Health figures, which indicate there "has not been a significant difference in people accessing eating disorder services from March 2020, when compared to the same time period in 2019", but has been picked up by the Southern District Health Board (SDHB). A response from the board to emailed questions notes an upward trend in referrals following the Covid-19 lockdown.

"Providing outpatient treatment places demand on staffing and is labour intensive," the southern board says.

That’s consistent with what Wilson is hearing.

"One specialist told me their DHB had more than doubled its paediatric inpatient case load this past year alone, on the back of already significant increases in previous years," she says.

The ministry does acknowledge that some people are having to wait too long for specialist treatment, and notes a changing profile in those getting sick to include more men and boys, a broader range of people from different backgrounds, and "some evidence of earlier onset in terms of age."

A spokesperson for the Minister of Health also notes that "some eating disorder providers will have wait lists from time to time as a normal part of managing demand for their services" — an approach widely regarded as a form of healthcare rationing.

Photo: Getty Images
Photo: Getty Images
The Government spent $15.21 million last year on specialist eating disorder services for the entire country — though the spokesperson notes mental health globally had a funding hike in the 2019 Budget.

Nevertheless, there’s a clear gap between the business as usual tone of the ministry, and the picture Amadio and Wilson paint.

EDANZ is calling for a sector-led specialist panel, supported by government, to look at what can be done.

"Eating disorders, like anorexia and bulimia are treatable illnesses — people can get better quite quickly if they are treated early enough, but that’s just not happening," Wilson says. Indeed, they are treatable at any age and stage, she says for the third time in the space of about 15 minutes.

The Ministry of Health has asked for a report from the hui, she says.

Wilson’s estimate is that there are hundreds of families whose needs are not being met . And that’s just those who have put their hands up, it doesn’t include those still fretting in silence.

Part of the issue is that many GPs don’t have the training to diagnose eating disorders — remembering most people with an eating disorder are in the normal weight range — and even if they do, and refer a patient for treatment, there are those "dangerously" long wait times. As a result, it’s common for a condition to deteriorate.

"People of all ages have ended up being hospitalised for refeeding while they wait for access to an eating disorder service," Wilson says.

What she is talking about there can involve people being fed through a nose tube to stablise their weight, in a hospital ward, then sent back out into the world little better.

The picture is of fragmented and disjointed healthcare services — different DHBs running their services differently, eating disorder treatments a stitched together matrix of different departments.

"There is no single point of view, and worryingly very little data collection," Wilson says.

"We are grateful for the work of the DHBs, but we must continue collaborating to improve treatment services."

Capacity is not meeting the need and people are dying, she says.

"It is dire, it’s absolutely dire. We are at crisis point."

A briefing paper from EDANZ to the new Government recommends, in particular, consideration of a UK model in which teens or young adults are contacted within 48 hours and treatment begins as soon as two weeks later.

Wilson emphasises outpatient approaches, ideally people supported to recovery by clinicians from different disciplines — doctors, psychologists, counsellors, dietitians etc — in partnership with families, broadly understood.

The international Academy for Eating Disorders backs that approach, recommending family-based therapy (FBT) and cognitive-behavioural therapy (CBT) for children and teens, and CBT for adults — mostly as outpatients.

But it also recognises that long-term residential treatment will be necessary for some: "This treatment option generally is reserved for individual [sic] who have been hospitalised on several occasions, but have not been able to reach a significant degree of medical or psychological stability".

The responses from the SDHB can be read as supporting Amadio’s belief there is unmet need for this sort of treatment option — especially if the care her planned centre offers is picking up those longer-term sufferers.

"The approach that the SDHB takes is that new presentations of people with eating disorders can make a full recovery — it is different for people who have been unwell with an eating disorder for a long time," it says.

The official response does go on to say that the "evidence-based" treatment programme the SDHB offers adults with an enduring illness, Specialist Supportive Clinical Management, can lead to full recovery.

The Health Minister’s spokesperson also communicates a qualified ambition when it comes to treatment outcomes.

"Prognosis varies depending on type of illness and duration of illness before a person seeks assistance," the spokesperson says. "The goal of all treatment is to support people to live rich and rewarding lives even if this is alongside some continued difficulties with eating and fusion of self-esteem with weight and body shape."

Further evidence of this sort of expectation-management messaging comes in a conversation with the mother of a young woman who has struggled with an eating disorder for some years. She says they were told her daughter would always live with it — a similar prognosis to the one Amadio was given all those years ago when she too was ill.

Amadio says that’s typical of approaches in New Zealand and Australia and why she wants to import the model she experienced in the US.

"In America they were always about full recovery and being recovered and that’s the difference I really want to make in New Zealand."

It’s the approach Amadio has been working with since her own recovery, now as a counsellor with a master’s qualification — the stepped approach, in which people get the sort of support they need until they are well enough to take on the world again.

Amadio says the environment we live in doesn’t make it easy.

"I think our society is really at a place where it has become body centric and food centric and there are a lot of judgements going on."

There’s a new diet for every day of the week making it hard for people to listen to their own bodies.

"I think eating has become an intellectual activity rather than a social and spontaneous activity."

So, people with a genetic disposition to an eating disorder are more likely to be triggered.

But genes are not destiny. Amadio is her own living proof and Wilson’s daughter got there too.

"What I want to say to people who have eating disorders but feel like they are not sick enough, is that they absolutely are sick enough," Amadio says. "If they wake up in the morning and they have a problem with their body or the food they are or are not going to eat, then that is sick enough to deserve treatment.

"You don’t need to look a certain way or reach a certain severity, or have been sick for a certain amount of time, if you have an issue with your food or your body then you deserve treatment."

The Dunedin centre is just the start as far as Amadio is concerned. She wants to have Recovered Living in every main centre in the country, treating illness, training psychiatrists, doctors, therapists, dietitians and nurses.

"So the big picture is to raise the standard of care in New Zealand."

To help people recover.

Nine truths about eating disorders ...

• Many people with eating disorders look healthy, yet may be extremely ill.

• Families are not to blame, and can be the patients and providers' best allies in treatment.

• An eating disorder diagnosis is a health crisis that disrupts personal and family functioning.

• Eating disorders are not choices, but serious biologically influenced illnesses.

• Eating disorders affect people of all genders, ages, races, ethnicities, body shapes and weights, sexual orientations, and socioeconomic statuses.

• Eating disorders carry an increased risk for both suicide and medical complications.

• Genes and environment play important roles in the development of eating disorders.

• Genes alone do not predict who will develop eating disorders.

• Full recovery from an eating disorder is possible. Early detection and intervention are important. Source: EDANZ

Photo: Getty Images
Photo: Getty Images
Make it about the connections

Food is often central. Think birthdays, weddings and Christmas. Maybe Christmas most of all.

For some people with an eating disorder, that will mean a period of furious concentration on the calories they need to burn in the weeks leading up to the festivities in order to "earn" Christmas lunch, Kristie Amadio, of Recovered Living NZ, says.

Amadio says routine is important for someone with an eating disorder and Christmas can take people out of their routines — whether it is travelling or having strangers in the home, different types of food, or food at different times.

"Talk about Christmas before the big event," Amadio advises.

"Eating disorders often want people to walk on eggshells, and people will ignore the elephant in the room hoping it will just quietly walk out the door, but the truth is it won’t and Christmas will arrive.

"What I want to say to families is talk about Christmas and make a plan together, meeting your person where they are at.

"For the person who is in recovery, if they need to take a break and take a moment to walk outside, it’s OK to grab a friend, walk outside, take five minutes to compose yourself and come back. Giving yourself that grace to ask for what you need at stressful times is really important."

If Christmas lunch needs to be a peanut butter sandwich, then so be it.

And make the occasion about relationships.

"What I would recommend for family members or friends, who have someone with an eating disorder, is particularly when it comes to comments around weight or body, is to really avoid saying things like ‘you are looking good’ or ‘you are looking healthy’, because the eating disorder will interpret that as ‘you gained weight’ or ‘you look fat’.

"What I recommend saying is ‘it’s nice to see you’, ‘I am looking forward to spending time with you today’. Things like that, not focusing on their body, but focusing on the meaning of the relationship."

Then when the eating is finished, don’t start talking about how much exercise will be required to work it off.

"You could try ‘that was a really great meal’," Amadio suggests.

Getting help

Recovered Living NZ: info@recoveredlivingnz.com or call 027314-5306 (New online recovery group has just started).

Eating Disorders Association of NZ: 08002EDANZ or (09)5222-2679.

Mental Health Foundation: freecall or text 1737.

Lifeline: 0800543354 (0800 LIFELINE) or free text 4357 (HELP).

Comments

eating disorders - really ? you take a picture of two people who look like they are eating a cream bun and another eating some sort of pastry - is this the message you want to put out there ?

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