A Canterbury father who says he's effectively been forced to watch his daughter die from anorexia is pleading for the Government to step in urgently, saying there is nowhere near enough help for patients in New Zealand.
The number of diagnosed eating disorders in young people has spiked across the country in the last year following the Covid-19 national lockdown - and as a result the South Island's only specialist treatment facility is under pressure with increased referrals and longer waiting times.
Desperate parents say they either have to pay hundreds of dollars a week for private specialists - including dieticians, nutritionists and psychologists - or simply sit and watch their children fade away while they wait for their turn in the public system.
There are increasing calls across the country for more funding, more specialist services and more inpatient care before the influx of patients becomes a spate of preventable and needless deaths.
The Herald revealed last week that experts have seen a 25-50 per cent increase in eating disorders in young people since the end of the Level 4 lockdown last year.
Upheaval, loss of routine and structure and anxiety around the global pandemic and the future have been cited as contributing factors to a rise in anorexia, bulimia, binge eating disorder and avoidant/restrictive food intake disorder.
This week the Canterbury District Health Board confirmed its South Island Eating Disorders Service had experienced a "significant increase" in referrals which resulted in longer waiting times for treatment in some cases.
The service is based at Christchurch's Princess Margaret Hospital and provides the only specialist inpatient treatment in the South Island alongside specialist outpatient treatment.
There are about eight beds available - allocated to the most severe cases.
"Following the increase in referrals to the service following Covid-19 alert levels 3 and 4, waiting times for outpatient treatment have increased," said Canterbury District Health Board specialist mental health services general manager Greg Hamilton.
"However, individuals who are medically unwell are prioritised.
"Inpatient beds are available for people in the South Island who have a primary diagnosis of an eating disorder and have not been able to make progress from evidence-based outpatient treatment.
"Most individuals with an eating disorder can be treated on an outpatient basis."
A Canterbury father spoke to the Herald about his daughter - considered an extreme case six times so far and admitted as an inpatient.
She has battled with anorexia for about five years since and her family have, at times, been able to do little more than watch her life almost pass before their eyes.
At the height of her illness she weighed no more than 36kg.
The man, who did not want to be named to protect his daughter's privacy, said he knew "nothing" about anorexia and really struggled to find any support other than groups of parents in the same situation.
The first time his daughter was admitted as an inpatient she was in hospital for 13 weeks and then told she was well enough to go home.
She walked out and told her parents "I'm not eating" and her spiral began again.
Each time that happened she went back on a waiting list for treatment.
In recent times her mental health took a deadly turn and she has tried to take her own life repeatedly.
"It's horrific," said her father.
"She's totally self-destructive ... these voices in her head are telling her 'if you eat food you're a piece of sh*t' or 'you need to kill yourself because you ate that food'.
"She'd go sometimes five days without eating anything, she'd be losing 2kg a week ... it's relentless, it's constant."
The teenager was eating "at the moment" after a serious self-harm attempt.
"She's had a turning point ... we're eating and we're putting on weight, she's getting better at the moment, she's on the mend - but you have to realise that can change in a heartbeat," he said.
"As soon as she stops eating or misses a meal or slacks off - I know that eating disorder will be straight back in there.
"My biggest fear? That she's going to die.
"Every time the phone rings and it's her mother I think 'is this it ... is this the phone call'."
The frustrated father said he'd spent years researching private care, overseas models and services and what treatments had the most success.
He felt there needed to be much more long term inpatient care in New Zealand with more outpatient support once a patient went into remission.
The man said he'd been told treatment costs for his daughter so far sat at about $2 million - and he said that could easily double as she grappled with her illness.
"All they're doing is putting a band-aid on it and sending her home," he said.
"I'd say 90 per cent of eating disorder patients need more ... when they get out and stop eating, you're right back at the start, back to the beginning to wait your turn attain.
"It's like you're sitting there watching your child die."
The man said eating disorders were "curable and treatable" and he found it unacceptable there was not more being done to help.
He firmly supported a petition put to the government by Christchurch mum Rebecca Toms, whose daughter Georgia is in the midst of an eating disorder and receiving privately-funded treatment.
Toms spoke to the Herald last week about her petition for urgent expert care and subsidy assistance for young people with eating disorders.
"There are not enough resources and experts in New Zealand to provide the specialised care for those struggling with an eating disorder," Toms said.
"The public and private system is full to the brim and the wait lists are extremely long so vulnerable people are lost in the system. What's more, there is no subsidy assistance to help families cover the costs.
"Eating disorders are life-threatening and if not caught early, they can become more entrenched, become harder to overcome and some will die."
Both Toms and the worried father agreed there needed to be more discussion, education around and acceptance of eating disorders - a serious mental illness - in New Zealand.
"Eating disorders are serious psychiatric illnesses," he said.
"From research, we know that "'stigma and shame' have been identified as the most frequent barriers to seeking help.
"This is alongside the general perception that eating disorders are a lifestyle choice rather than an illness.
"Research-based education is key in equipping people and healthcare providers with the tools to recognise symptoms and facilitate early intervention."
EATING DISORDERS - INFO AND HELP
It doesn't matter what size, age or shape you are – anyone can have an eating disorder and every person's experience of an eating problem is unique.
Eating disorders are mental health problems that involve:
• Always thinking about eating, or not eating;
• Feeling out of control around food;
• Using food to meet needs other than hunger;
• Having an obsession about food, weight and body shape.
There is no clear cause of an eating disorder. For people at risk of an eating disorder a number of things could set them off, such as a life crisis or the death of a loved one, family changes, moving home or school, bullying, a relationship break-up, a change of job, school problems, a personal failure.
There are many symptoms of an eating disorder. These may not relate to everybody, and sometimes it can be difficult to notice any signs at all.
Signs of an eating disorder could include:
• Extreme concern about being too fat and thinking about food and dieting all the time;
• Increasing isolation from others;
• Secret eating and purging (vomiting or taking laxatives);
• Food disappearing from the house, especially high-calorie foods;
• Spending long periods in the toilet, especially immediately after meals, sometimes with the tap running for long periods;
• Shoplifting food;
• Strenuous exercise routine, even exercising when injured or unwell;
• Severe weight changes;
• Sudden mood changes, irritability, depression, sadness, anger, difficulty in expressing feelings;
• Poor concentration and being unusually tired;
• Constant pursuit of thinness.
Some of these signs can relate to different problems and not to eating disorders, but if there are several of these signs together, it could mean an eating problem.
If you need help, reach out to your GP or local mental health provider.
Or if you need to talk to someone else:
• EDANZ, Eating Disorders Association of New Zealand 0800 2 EDANZ
• LIFELINE: 0800 543 354 or 09 5222 999 within Auckland (available 24/7)
• YOUTHLINE: 0800 376 633 ,free text 234 or email email@example.com or online chat.
• NEED TO TALK? Free call or text 1737 (available 24/7)
• KIDSLINE: 0800 543 754 (available 24/7)
• WHATSUP: 0800 942 8787 (1pm to 11pm)
• DEPRESSION HELPLINE: 0800 111 757
• SAMARITANS – 0800 726 666.