Dying for help: Eating disorder treatment waiting lists months long

The Covid-19 pandemic has sparked a wave of serious eating disorders that are overwhelming treatment providers. How do you help a loved one in crisis when there’s a waiting list everywhere you turn?

Warning: This story discusses eating disorders and suicide.

As she gets older, more and more people Alice* knows die which, at face value, seems strange given she only turns 34 in April.

READ MORE:
* Covid-19: Number of eating disorder patients soaring since lockdown, experts say
* Covid-19 pandemic triggered eating disorder – then sparked recovery
* ‘Pure hell’: Dunedin woman had to go to the US to get help for her eating disorder
* Cafe owner shares how friends, family and a cooking venture helped her out of anorexia
* Anorexia survivor trying to help others beat the disorder says ‘system is failing them’

But she has anorexia nervosa and so do the people who keep dying – she guesses there have been about 10 so far – either from medical complications of their eating disorder, or by suicide.

A statistic that’s often bandied about is that anorexia is the most fatal mental illness. People with the condition are about five times more likely to die than their peers without it and the rate is much higher than for illnesses like schizophrenia and bipolar disorder.

Does Alice worry she might die too?

“Yeah.” She pauses. “Yes.”

She sounds listless; each word is a hybrid of a whisper and a sigh. She’s going through what she describes as a “tough patch” at the moment, which is very much an understatement. Because of the illness, parts of her body – like her heart and her bones – are irreparably damaged, leaving her physically as well as emotionally exhausted. It’s unlikely, even with a full recovery, that she’ll ever be able to have children. Yet the nature of the mental illness makes it hard for Alice to accept that she’s unwell enough – almost as if she thinks she’s not good enough at starving herself to death.

“Sometimes you get into that, ‘It won’t happen to me’, which I think is a really common feeling, that, ‘I’m not sick enough’.”

It’s a mindset that can be exacerbated by the difficulty people with eating disorders face when trying to get help through the public health system.

Alice was diagnosed with anorexia in her first year at university. In response to gaining weight, she began calorie counting, which led to cutting out whole food groups, excessively exercising and isolating herself from friends and family. Within six months, she had lost more than half her body weight and dropped out of nursing school.

By the time she moved home to her parents’ place, she’d stopped eating and drinking completely. Her mum took time off work to care for her and slept beside her in bed, for fear Alice would die in the night. Yet it wasn’t until she collapsed and was hospitalised that she got an appointment with her region’s eating disorder service.

Eating disorders are curable at any stage. But it’s best to nip them in the bud when they first start to develop.

“It’s absolutely huge. I mean, the research is unequivocal”, says clinical psychologist Dr Jan Geary, who specialises in disordered eating. Within the first three years is good, but she prefers to see people much earlier. “Within the first few months it’s so much easier to turn it around. Once those behaviours become entrenched and habituated, they can be very difficult to shift.”

But with an under-pressure public health system, such early intervention is easier said than done. As was the case with Alice, an illness like anorexia can develop fast and access to care can be unattainable until physical symptoms are so well advanced they require hospitalisation.

Even private practitioners – which are unaffordable for many – are struggling with demand. At present, the waiting list to see one of the four psychologists at Geary’s Shelly Beach Practice, in Auckland’s Herne Bay, is four months. Several times last year the list had to be closed completely.

It’s not just Geary’s practice that’s overwhelmed by need. Across the city in Parnell, Nurture Psychology is experiencing a similar level of demand. “At the end of last year, we actually closed our waitlist,” says practice director and clinical psychologist Dr Marion Roberts, who also teaches at the University of Auckland. “It was just becoming a bit long for us as clinicians, to be honest, to manage the waitlist well.” It’s reopened since then, but waits can still be long.

Roberts says part of the problem is the spillover from the public sector. “We have a lot of families that have referred to us in the last six months or so, where they have said, ‘We’ve been assessed by the DHB [district health board] and we’ve been given a four-to-six month waitlist and so we’re seeing what we can access privately to help with treatment’.”

Both psychologists are aware of people whose physical health, while waiting for treatment, has declined so dramatically they’ve ended up in hospital. And it’s happening more frequently than ever.

Last year hospitals in at least three of Aotearoa New Zealand’s main centres saw admissions of children and young adults with eating disorders or suspected eating disorders spike.

At Auckland’s Starship Children’s’ hospital, admissions of 10 to 15-year-olds doubled (from 33 kids in 2019 to 66 in 2020), as did admissions of under 20-year-olds to Auckland City Hospital. A similar increase was seen across all ages at Waikato Hospital, while hospitals in Wellington saw a jump of 31 per cent.

It’s a crisis, Eating Disorders Association (EDANZ) president Nicki Wilson says. “The Covid-19 pandemic has had an impact on mental health generally, I know, but there has been a particular spike in eating disorders”.

Indeed, pandemic-related changes to people’s routines, increased social isolation and anxiety, has sparked similar trends in many places across the globe.

Wilson says EDANZ, a charity that educates and supports carers of people with eating disorders, saw the number of emails and calls to their helpline double last year and the trend is continuing into 2021.

“Services are stretched, health professionals are working so hard, and they just can’t cope with the demand,” Wilson says of the public system. “The wait times are really, really long and as a result, people are becoming much more unwell than they should, than they need to, and so the suffering is terrible.”

Eating disorders are sometimes invisible

Looking back, Mia* guesses she first developed the symptoms of an eating disorder about six years ago, when she was 17. But the thing about eating disorders is they’re sometimes invisible, so no one really noticed at first.

“It’s not so much a physical thing. Like a lot of people see it as, you know, if you’re really skinny, you have an eating disorder, or whatever. But most of the time I’ve had it, I haven’t been super physically sick.

“A lot of is mental. Just, like, obsession. Comparing yourself to other people, counting calories, like, every day, obsessively over-exercising. And a lot of it is about control; trying to feel a sense that you’ve got your life together, when everything else is a bit all over the place. It’s about guilt as well, I guess. Feeling like you don’t really deserve to eat and be healthy. Well, that’s what it’s like for me.”

Mia’s eating disorder comes in waves. When it’s bad, she’ll eat her lunch in the bathroom, if she eats it at all. She describes feeling something like anger towards food and the anxiety it induces in her. “I still wanted to eat it. But … if I did, the guilt would be so intense and you just feel completely out of control and like the world’s going to collapse, or something.”

When her weight gets too low, her heart races when she stands up and she sometimes faints, her hair falls out and her mind becomes foggy. “My partner told me that he really, really struggled,” Mia says. “He felt like I wasn’t really alive any more. He couldn’t talk to me, we couldn’t have a conversation at all.

“I didn’t realise at the time, but every night he was worried that he would wake up, and I’d be dead.”

Despite all this, Mia’s never been unwell enough to get much help. When she was at her worst, she went on the waiting list for a first assessment at her region’s eating disorder service. About two months later, in June 2019, the assessment was done by a nurse, who put her on a waiting list for therapy. Mia occasionally sees a dietician through the service, and her GP keeps an eye on her physical health.

It’s good to have them, she says, but what she desperately needs is help with her mental health. Despite being on the waiting list for therapy coming up two years, she’s never seen anyone.

Like Alice, a big part of Mia’s illness is feeling like she’s not sick enough to deserve help, and she says her inability to access care has played into that.

A blue shelving unit lined with cookbooks and condiments frames the entranceway into a bright, white room filled with family photos. Mia no longer lives in the family home, but her parents and two brothers do.

Resting her elbows on the kitchen table, her fingers laced to create a rest for her chin, Mia’s mum Anna stares into the distance, recalling the periods when her daughter’s physical symptoms were at their worst. “The number of times she said ‘All I need to do is just get myself a little bit more starving, so I can get into hospital and then I’ll get access’,” she says. The family tried calling and emailing, knocking on every door they could think of, as they watched their daughter become more and more unwell, but the system was overwhelmed.

“From our experience, it’s that kind of ‘ambulance at the bottom of the cliff’ syndrome, really,” says her father Peter.

Eating disorders are widely misunderstood. They’re not a lifestyle choice, or a diet gone too far, but a complex mental illness with serious physical consequences. Risk factors that can trigger their inception include developmental changes like puberty, body dissatisfaction, environmental factors and sociocultural influences. But research has shown that eating disorders like anorexia, bulimia and binge-eating run in families too – and that genes substantially contribute to a person’s risk of developing one.

Mia is not Peter and Anna’s only child with an eating disorder.

“In many ways, with Adam, we’ve been very, very lucky,” Anna says. “Lucky in inverted commas, because by the time we registered [that he was sick], he was hospitalised, straight away.”

Adam was just 13 when he was admitted to hospital so severely malnourished that his kidneys had failed and his heart rate had dropped to just half of what it should be.

Eating disorders are complex

Eating disorders don’t only occur in a “white, European middle socio-demographic, young age group”, Dr Marion Roberts says. And while it’s true that they are most likely to first present in adolescence or early adulthood, that’s not the only place where they occur.

“We’re also learning more and more how prevalent eating disorders are amongst males, where previously they’ve been misdiagnosed or just missed because people think of it as a female thing,” Roberts says. Similarly, they can present across any age group or ethnicity.

In Aotearoa, it’s estimated that less than 1 per cent of the population suffers from anorexia nervosa, with a slightly higher occurrence of both bulimia nervosa and binge eating disorder.

For Māori, the prevalence of anorexia is lower than in the population as a whole, while the occurrence of bulimia is higher – though research out of the UK suggests that indigenous and ethnic minority groups have low rates of access to specialist eating disorder treatment.

Over the last decade in Aotearoa, coroners have investigated the deaths of 12 people with either anorexia, bulimia or an unspecified eating disorder. The ages of the dead range from 14 to 69, eleven of them were women, and ethnicity is unspecified. But Coroners don’t investigate all deaths, and Roberts says the number likely represents a tiny portion of the lives eating disorders have taken in this country. She points to a German study, which found a crude mortality rate in people hospitalised with anorexia nervosa of 5.9 per cent. That’s 59 deaths over a six-year period following hospitalisation, for every 1000 people hospitalised.

“People are dying from a treatable illness and it’s completely unacceptable,” EDANZ’s Nicki Wilson says. And she worries that with the current level of demand, things will only get worse. “This is a life threatening illness and people are becoming so unwell. And treatment is so difficult to obtain in a timely manner. So yes, we are very concerned that people are dying.”

Within the public health system there are three main regional ‘hubs’ that provide specialist inpatient and outpatient care for people with eating disorders; Auckland DHB’s Tupu Ora covers the Auckland and Northland regions, the Central Region Eating Disorder Service provides care out of Wellington for those living there and in the Manawatu-Whanganui and Hawke’s Bay regions, and the Southern Eating Disorder Service covers all of Te Wai Pounamu.

Service users form the Midlands regions – Taranaki, Waikato, the Bay of Plenty, Tairāwhiti and Rotorua – can access the ADHB’s residential eating disorder unit, though other specialist services are provided locally.

To be seen by Auckland’s Tupu Ora, clients must first be referred by their GP to a secondary mental health service for assessment. It’s unclear what the wait times for these assessments are, or how many people are in line, and people who have eating disorders aren’t necessarily referred on to Tupu Ora.

One parent who spoke to RNZ says her 15-year-old daughter has to wait a month for an upcoming appointment with the Waitematā DHB’s child and youth mental health team. Since last year, she’s been paying $215 weekly or fortnightly for a private psychologist (it took four months to get the first appointment) on top of check ups by her daughter’s GP every six to eight weeks. She’s taken on extra work to help cover those costs, but feels lucky the family of seven can make it work.

The illness has sucked the joy out of her child, she says. “I used to call her the universal donor. She’s like that ‘O’ blood type, which can go to anybody. She fits in with every single sibling in a really tight way. And at the moment, she’s not there.”

She’s hopeful the assessment will trigger a referral to Tupu Ora or specialist treatment within the Waitematā DHB, but she’s been told by both the psychologist and the GP not to hold her breath, as her daughter’s not at crisis point – yet. She understands the situation – the inundation of people crying out for help – but it still terrifies her. It’s been a year since her daughter developed the eating disorder, during the first Covid-19 lockdown. “I feel slightly desperate, because I’ve been reading and educating myself a lot about eating disorders. And while I can see that [my daughter] is actually not as bad as many people, I know how quickly it can deteriorate.”

In February, there were 31 people waiting to be allocated an appointment with Tupu Ora. Last year, about 135 went through the residential facility and 1788 had face to face engagement with a specialist community service. Within the Counties Manukau DHB, there are 32 awaiting treatment locally.

The pathway to care is different for the Wellington-based Central Region Eating Disorder Service, which accepts referrals from anyone. At present, 168 individuals are waiting for treatment or assessment there. In the South Island, referrals to Christchurch’s Southern Eating Disorder Service mostly come from GPs. In late February, about 85 people were awaiting treatment.

But the ambulance at the bottom of the cliff is still there for those who get sick enough.

Josie*, who is 18 now, started self harming in Year 10. By the following year, she had developed anorexia. Her GP monitored her physical health and after a referral, she was assessed and accepted for treatment by Waitematā DHB’s Marinoto child and youth mental health team.

“She was about to be assigned a therapist at Marinoto and we had to have one more GP visit. The vitals were sent to Marinoto, we got a ring instantly, and they said take her to the hospital now”, her mother says.

Josie spent six weeks in hospital, before being transferred as an outpatient to Tupu Ora. She’s been hospitalised five times since then – including once after attempting suicide, and another time when she collapsed after running 85 kilometres in a day.

But so far this year, she’s stayed out of hospital and has maintained a stable weight. She’s not out of the woods yet, but when everything is running smoothly, and no one is on holiday, she sees her therapist through Tupu Ora once a week and at the start of the month, she started studying nursing at AUT.

Josie’s mum just wishes she’d been able to get her help earlier, so the condition hadn’t become so entrenched. But a school counsellor, who was aware her daughter was self harming, hadn’t passed the information on.

Adam’s family also wish they’d got him help earlier. But his body-mass-index (BMI) seemed to be in the normal range and they’d avoided taking him to his GP for fear the eating disorder they suspected he had would be dismissed. Then suddenly, he was in hospital.

“It was terrifying realising he’d been sitting there, just wasting away,” Anna says. It was four years ago, but as she describes the realisation her son was dying, her voice cracks, she closes her eyes and her hands creep up to cover her mouth. They knew he was sick, but because Adam hid his symptoms so well, they didn’t realise the extent.

“I hadn’t seen him. I mean, a 13-year-old boy, you don’t really see them naked anymore… And when they took his clothes off in the hospital, it was shocking. He looked like he’d been, you just felt the most awful parents in the world that you could let your child look honestly, like he’d come out of Auschwitz.”

But if Josie or Adam’s parents had caught their symptoms earlier, would their kids have been sick enough to get the help they needed?

Early diagnosis, referral to evidence-based treatment with wrap around care needed

The dream scenario for Nicki Wilson of EDANZ is that people with eating disorders would be diagnosed early and referred to evidence-based treatment with wrap-around care. Their families or support people would be part of treatment from the beginning, and they would recover quickly, with minimal suffering.

“That’s what we’d like to see and that is occurring in places.”

In EDANZ’s June 2018 submission to the Government Inquiry into Mental Health and Addiction, they recommended increasing funding to provide training in diagnosis and evidence-based treatment of eating disorders for GPs and community mental health services. They also recommended the capacity of specialist eating disorder services be increased.

But there was no mention of eating disorders in the recommendations that came from the inquiry.

Minister of Health Andrew Little acknowledges there has been an increase in the number of people accessing eating disorders services – a trend he says began ten years ago – and corresponding pressure on treatment providers.

The 2019 Wellbeing Budget increased funding to DHBs for treating mental health and addiction issues and initiated an early intervention programme, he says.

“The programme is designed for early intervention to prevent people reaching crisis point and requiring specialist services. The roll-out of these free mental health and addiction services is well underway with more than 160 GP sites in operation as at the end of January 2021.”

Wilson says the programme is making no difference to people with eating disorders.

“Having heard the minister speaking about how things are improving and how they’ve been putting resources into primary care and into GPs, well we are not noticing that. The messages that we’re getting back from families are that GPs need better knowledge and are unsupported.

“GPs are telling us that too – that they need better education and more support in the area of eating disorders. And GPs are certainly saying that they’re experiencing an increase. We hear from GPs every week asking for help and resources for meetings.”

Four years on…

It’s about 8.30pm, and Adam’s just come home after a high school debate. He has a mop of curly dark hair, and he’s tall – malnutrition had stalled his growth, but after his weight was restored, he shot up like a weed.

It’s been four years since he found himself in a paediatric ward attached to a screaming heart monitor, with a tube down his throat. “The heart machines kept saying that I was going into cardiac arrest, and it was clear that was something that happens there quite regularly, because the lady was just like, ‘Oh, it’s fine. Don’t worry’,” he says. He sounds almost casual about the whole thing. Did the experience not terrify him?

“It should have, but I felt… I was honestly just more relieved than anything. Because even though I denied it, I’d actually been silently begging for an intervention.’

Anorexia had stopped Adam from seeing his friends. He enjoyed nothing and, although he couldn’t sleep, just getting out of bed had become a chore. He was so cold all the time that, even now, not being warm enough scares him.

His recovery hasn’t been straightforward – there have been a few blips. And he’s only recently got to the top of the waiting list to start seeing a psychologist through the regional eating disorder service. Now, when the blips come, he says he’s able to recognise and counter them. He plans to start university next year.

His mum Anna says no one’s pretending the illness has gone away – it’s very much still there – but she’s so pleased with Adam’s progress since he started individual therapy.

“Yeah, I think I’m at the best point I’ve been yet,” he says.

But Mia, his sister, is still waiting.

*Names have been changed

WHERE TO GET HELP

If it is an emergency and you feel like you or someone else is at risk, call 111.

EDANZ: Find support, information and treatment options online, call the helpline 0800 2 EDANZ / 0800 2 33269, fill in the contact form, or email [email protected]

1737: Free call or text 1737 any time to speak to a trained counsellor, for any reason.

Lifeline: 0800 543 354

Suicide Crisis Helpline: 0508 828 865 / 0508 TAUTOKO (24/7). This is a service for people who may be thinking about suicide, or those who are concerned about family or friends.

OUTline: 0800 OUTLINE (0800 688 5463) every evening, 6pm to 9pm.

Rainbow Youth: (09) 376 4155

Depression Helpline: 0800 111 757 (24/7)

Samaritans: 0800 726 666 (24/7)

Youthline: 0800 376 633 (24/7) or free text 234 (8am-12am), or email [email protected]