Susan*, 22, has been fighting to survive in a medical ward in Christchurch Hospital for the past week due to severe anorexia.
It began when she was 14.
Her mother Fiona* said she was discharged from South Island Eating Disorder Service (SIEDS) early last year after her treatment journey came to an end. Since then, the illness has intensified.
"Medically she's been unstable since November of last year, with regular admissions to the medical ward at the public hospital, usually to have her electrolytes restabilised."
Fiona said that meant Susan spends 12 hours to 24 hours on a drip, she is discharged, the imbalance returns, and the cycle begins again.
"It's gotten to the stage where she's being admitted for that three times a week."
She was admitted 35 times to the emergency department and has spent 55 nights in the acute medical ward for the illness.
"We are wanting - needing - for her to be admitted to the South Island Eating Disorders Unit. They have indicated they may be open to further treatment down the track, but they have no beds available."
Fiona fears if the cycle continues, her daughter will never recover, and she questions the Canterbury District Health Board's spending priorities.
"How much does a night at the SIEDS unit cost compared with a trip through the emergency department and two nights on the medical ward?"
Canterbury District Health Board (DHB) said patients with eating disorders were sent home when treatment does not work, and some die.
No one from the DHB would be interviewed, but its general manager of specialist mental health services Greg Hamilton provided a statement saying: "Through successful treatment some people who have a disorder are able to adapt to it over time and manage their disorder.
"There are no researched and evidence-based treatments that claim 100 percent of success, 100 percent of the time.
"When we say there are some people who have an illness that is not responsive to any interventions, who deteriorate and in some cases sadly pass away - this comes at the conclusion of an extended treatment journey.
"A discharge from the service in these circumstances would only eventuate when all appropriate treatments have been attempted, and we have exhausted all options at our disposal."
There are 74 people on the South Island waiting list and there were 100 face to face appointments in March. Hamilton said SIEDS had not declined any referrals this year, "when the main diagnosis was an eating disorder".
Auckland's Tupu Ora Service said patients may be discharged if they no longer needed specialist care or if the patient "makes a decision not to engage with or continue treatment".
There are 31 adults on Tupu Ora's waiting list.
Wellington's Central Region eating disorder service (CREDS) said discharged patients received wraparound support as they moved into the community and home. There are 168 people on the waiting list for all CREDS services.
Last year, the South Island service turned away Georgia Toms, who was 15 at the time.
She said the refusal was on the grounds her condition wasn't severe enough.
"They were like 'you're not up to our standard and the only way to get to our standard is if we leave you to get worse, and then you can come and we can help you'.
"The eating disorder in my head was like 'you're not sick enough, you can keep going, not eating, and getting worse and worse and worse until you are sick enough. Then you've done your job and you've lost enough weight to go to the hospital and get better'."
Her family has been paying $400 a week for private treatment. That has now dropped to fortnightly as she is improving.
A Christchurch dietitian said this story was not unique.
Private dietitian Victoria Schonwald said clinicians were far too quick to decide some patients with eating disorders were hopeless cases and said she had seen a spike in the past fortnight of patients who claimed they have been shut out.
"What I've seen just recently is if you've had a couple of admissions into hospital you get classified as 'severe' and 'enduring' and they pretty much give up on you at that stage and there's no outpatient support either."
She said these patients told her they have been told: "'Get the end of life plan ready, there's nothing else we can do'... so I don't really accept that."
Schonwald, who herself spent a decade recovering from a range of eating disorders, said she has been treating some patients for free because "there is no other help for them".
She said there was also a desperate need for more trained dietitians and better resourcing in the sector, and her call is echoed by three parents RNZ spoke to.
Schonwald said people have the greatest chance of recovery when the disorder is caught early.
"The shorter the amount of time that someone has been stuck in an eating disorder, the easier it is to escape from those cognitions."
Georgia Toms said she is improving - progress she credits to her private support networks, but she has one message for decision makers.
"We need a change.
"The hospitals need more psychology help and dietitian help. Even if they do like 20 free sessions with a psychologist and a dietitian - that would help a lot of people."
Georgia's mother, Rebecca Toms, will present a petition to Parliament next month asking for urgent extra resourcing and subsidies for New Zealanders fighting eating disorders. Her petition closes today.
*These names have been changed.
Where to get help:
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