Kiwi parents are paying "endless" costs for private care for their children with eating disorders. Photo / 123RF stock image
Kiwi parents are spending hundreds of dollars a week on private healthcare for their children battling serious eating disorders - unable to get a place in the overloaded public system.
They say the costs can be "endless" but there is no other choice when their children are not considered sick enough for publicly funded help.
Health Minister Andrew Little said the situation was "concerning" but maintained there was enough being done behind the scenes to address the shortfall in services.
This month the Herald has been reporting on a spike in eating disorders in young people in the last 12 months, with the upheaval, stress and anxiety of the Covid-19 pandemic and lockdowns being a contributing factor.
Experts say referrals have spiked between 25 and 50 per cent and as a result there are lengthy waiting lists for assessments and help.
There are just three specialist eating disorder services in New Zealand - Auckland, Wellington and Christchurch - with limited inpatient facilities offering less than 25 beds across the country.
Health workers and parents alike say the waiting list to even be considered for the services are between six months and 18 months.
They say that is simply not good enough and are desperately calling on the Government to do more - and quickly.
Parents of young people battling anorexia, bulimia and other serious eating disorders wanted to see more experts and funding so their children could get much-needed help without them forking out thousands of dollars.
"More experts would mean not waiting so long for treatment," said one Canterbury mother.
"In our case it was a five month wait for an assessment and we are now into the fifth month waiting for treatment.
"With an ongoing, long term illness the costs continue to mount… extra food costs, prescriptions, doctors bills, petrol costs, parking costs… The list gets endless.
"If our kids had cancer they would receive much much better care. It's so sad."
An mother in Auckland said her daughter spiralled into anorexia after a "diet pact" at school with her friends.
The pact started before lockdown and saw the girls eating just four crackers a day.
"Covid hit, the diet continued I saw her walk out of her room in a sports top and shorts to see bones," she said.
"I burst into tears.
"For well over a year we have battled with anorexia."
The young teen was admitted to Starship Hospital for a period but the second time she needed that level of care there was "no room".
Her mother took two weeks off work to try and get her child eating again.
"I had to be a mother, doctor and dietician," she said.
"Of course it didn't work."
Her daughter's weight plummeted dangerously before she was able to get any real help.
"I've cried, yelled and dropped to the floor powerless," she said.
"We are in the fortunate position of being able to afford private care. This only came after me emailing many places relentlessly as they all said no due to being full and the long waitlist.
"Then she hit (an extremely low weight)… they listened and I was able to get an appointment."
The woman said her family had been through the wringer since her daughter became unwell.
"I have seen my girl possessed by the devil," she said.
"This disease is relentless, it kills a family unit.
"Support for parents is not there. We have learned as we experienced the process. We have made many mistakes.
"I have felt for people who can't get what we have been able to pay for… you'd sell the clothes on your back to get help."
Another Auckland mother says she is giving up work to look after her daughter full time.
She spends at least $200 a week on private specialist appointments for her teen who developed bulimia when she was 12.
"It's a very difficult thing to manage… I have to hide the food she will binge on in the car… it's horrible," she said.
"As a parent you feel like you're poking around in the dark trying to get support or help… it ends up being very fragmented."
Her daughter was put on a waiting list for an assessment for Auckland's regional Tupu Ora Eating Disorder Services.
"She's not getting better while we're on the waiting list though," she said.
"So I am paying a psychologist $190 a week, a psychiatrist $190 a week, about $150 for a nutritionist… it's expensive.
"The system is broken… there needs to be a lot more help.
"Every situation is different, but it's all really horrible… there have been times I have lost hope, it's an awful, awful journey."
Health Minister Andrew Little said there had been an increase in the number of people accessing eating disorder services over the last decade and the Government had invested more into the mental health and addiction sphere in the 2019 Budget in a bid to better treat and support Kiwis.
"Obviously I'm concerned that this continues to be a challenge… which is why I am keeping pressure on the Ministry to improve our mental health services," he said.
"I acknowledge that there is pressure on all mental health and addiction services, including eating disorder services.
"I expect the Ministry to continue to check-in with providers to monitor and respond to need as appropriate."
Little said the Budget 2019 investment was designed for "early intervention to prevent people reaching crisis point and requiring specialist services".
As well as seeing people earlier, "Health Improvement Practitioners" were helping to upskill GPs on a range of mental health issues - including eating disorders.
The Minister said funding had also been "ring fenced" within individual district health boards for mental health services.
"I understand some DHBs have increased their spending on eating disorders treatment as a result."
A man who has watched his teen daughter battle anorexia for years was aware of the Government's promises but was yet to see a difference.
"The Government talked about increased support for mental health but I'm not at all clear what's actually happened, they were right to identify it but seems to have gone nowhere," he said.
"We too have struggled with this dreadful disease and I completely relate to the frustrations expressed.
"We are coping but my god it is tough, and know of people whose children have died.
Another father who had funded his daughter's private treatment said the journey had been "excruciatingly painful".
"There are no dress rehearsals for this roller coaster ride that you cannot get off until the demons have been conquered," he said.
"The financial cost is horrendous but we are certainly glad to have our daughter back and we are very close now which is priceless."
A petition by a Christchurch mum whose daughter is battling an eating disorder is currently in progress.
Rebecca Toms is calling on the Government to provide more expert care and subsidy assistance for young people with eating disorders.
To view the petition click here.
In New Zealand there are a range of treatment options available for eating disorders: public, private, specialist and general, in-patient or day based.
Accessing treatment usually starts with a visit to a GP who will then refer the patient to the appropriate service for treatment.
Most patients start at community mental health services
A patient can then be referred to a specialist eating disorder clinic - located in Auckland, Wellington or Christchurch.
There is a waiting list for assessment and then treatment unless the illness is deemed "severe" - then referral may be immediate.
All three specialist clinics have inpatient facilities.
In Auckland, patients under 16 are admitted to Starship Children's Hospital which has dedicated beds for people with eating disorders.
Those 16 and over will be admitted to the Tupu Ora Residential and Day Clinic in Parnell which has nine beds for residential care.
The Central Region Eating Disorder Service is based in Wellington and has 6 dedicated inpatient beds.
There are also six beds allocated to eating disorder patients at Princess Margaret Hospital in Christchurch under the South Island Eating Disorder Service.
An additional two beds are dedicated to younger patients.
Once discharged from inpatient units, patients are usually admitted to outpatient programmes for further and ongoing treatment.
Outside the public process people can choose to engage with their own specialists privately including nutritionists, dieticians, psychologists, psychiatrists and other professionals.
Get in touch with Eating Disorders Association of New Zealand if you need help finding a private provider in your area by phoning Ph 0800 2 EDANZ or emailing info@ed.org.nz
If you need urgent help, reach out to your GP or local mental health provider.
Or if you need to talk to someone else:
• LIFELINE: 0800 543 354 or 09 5222 999 within Auckland (available 24/7)
• YOUTHLINE: 0800 376 633 ,free text 234 or email talk@youthline.co.nz or online chat.
• NEED TO TALK? Free call or text 1737 (available 24/7)
• KIDSLINE: 0800 543 754 (available 24/7)
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