Warning: some people may find aspects of this story scary.
Susan *, 22, has been struggling to survive in a medical ward at Christchurch Hospital for a week with severe anorexia.
It started when she was 14.
Her mother, Fiona *, said she was released from the South Island Eating Disorders Service (SIEDS) early last year after her treatment journey ended. Since then, the disease has intensified.
“Medically, she has been unstable since November of last year, with regular admissions to the public hospital medical department, usually to have her electrolytes re-stabilized.”
Fiona said that meant Susan was spending 12 to 24 hours on a drip, she is unloaded, the imbalance returns and the cycle begins again.
“She got to the stage where she’s admitted for it three times a week.”
She was admitted to the emergency room 35 times and spent 55 nights in the acute care ward for the disease.
“We want – we need – her admitted to the South Island Eating Disorders Unit. They have indicated that they might be open for further treatment later, but they have no beds available.
Fiona fears that if the cycle continues her daughter will never recover and she is questioning the Canterbury District Health Board’s spending priorities.
“How much does one night in the SIEDS unit cost compared to a trip to the emergency room and two nights in the medical room?”
The Canterbury District Health Board (DHB) said patients with eating disorders were sent home when treatment did not work and some died from it.
No one from DHB would be interviewed, but its Executive Director of Specialized Mental Health Services, Greg Hamilton, said: “With successful treatment, some people with a disorder are able to adjust to it over time. and manage their disorder.
“There are no researched, evidence-based treatments that claim 100% success, 100% of the time.
“When we say that there are people who have a disease that does not respond to intervention, who deteriorate and in some cases unfortunately die – it comes at the end of a long course of treatment.
“A discharge of the service under these circumstances would only occur when all appropriate treatments have been attempted and we have exhausted all options available to us.”
There are 74 people on the South Island waiting list and 100 in-person dates in March. Hamilton said SIEDS had not refused any referrals this year, “when the primary diagnosis was an eating disorder.”
RNZ interviewed other services that cover the northern and central regions about the circumstances in which they send patients home.
Auckland’s Tupu Ora service said patients can be discharged if they no longer need specialist care or if the patient “makes the decision not to initiate or to continue treatment.”
There are 31 adults on the Tupu Ora waiting list.
The Central Wellington Eating Disorders Service (CREDS) said released patients received comprehensive 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 down the then 15-year-old Georgia Toms.
She said the refusal was on the grounds that her condition was not serious enough.
“They were like ‘you don’t live up to our standards and the only way to get to our standards is to let yourself get worse, so you can come and we can help you.’
“The eating disorder in my head was like ‘you’re not sick enough, you can go on, not eat and get worse and worse until you get sick enough. Then you did your job and lost enough weight to go to the hospital and get better. “
Her family pays $ 400 per week for private treatment. This has now dropped to every fortnight as she improves.
A Christchurch dietitian said this story was not unique.
Private dietitian Victoria Schonwald said clinicians were far too quick to decide some eating disorder patients were hopeless cases and said she had seen a spike in the past fifteen weeks of patients claiming to have been excluded.
“What I’ve seen recently is that if you’ve had a few hospital admissions you are classified as ‘severe’ and ‘long lasting’ and they basically abandon you at that point and there is no no more outpatient support. “
She said these patients told her that they were told, “Make the end-of-life plan, there is nothing else we can do” … so I don’t really accept that . “
Schonwald, who herself spent a decade recovering from a series of eating disorders, said she treated 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 resources in the area, 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 length of time a person has been stuck with an eating disorder, the easier it is to escape these cognitions.”
Georgia Toms said she is improving – progress she credits to her private support networks, but she has a message for policymakers.
“We need a change.
“Hospitals need more psychological and dietitian support. Even though they 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 calling for urgent additional resources and grants for New Zealanders battling eating disorders. His petition ends today.
* These names have been changed.
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