Experts, patients and parents fear more people will die from eating disorders if the government do not step in urgently. Photo / 123RF
A Christchurch mum is pleading with the Government for more resources around eating disorders as her teenage daughter - and countless other young Kiwis - battle for the help they desperately need.
Rebecca Toms says someone will die unless something is done - and a local eating disorder expert agrees.
Toms and her daughter Georgia, 16, bravely spoke about their "heartbreaking" journey and the petition, hoping they can help others in the same situation.
The Herald revealed yesterday that there had been a significant increase in the number of young people with eating disorders in the last 12 months - and following the Covid-19 national lockdown.
Experts said the influx of new patients was "like a tsunami" and shared their fears of people not getting treatment in time.
Toms reached out to the Herald after reading about the situation in the Herald and shared her experience after her daughter was diagnosed with an eating disorder.
"Georgia developed an eating disorder during the first lockdown, we were living in Auckland at the time," Toms said.
"We were seeking help for it but we were told that the waiting lists were huge, that they had tripled and it was really hard to get in.
"We were just pushed around the system trying to find the care we needed for her."
Toms said the public and private sector were both slammed.
"There just are not enough resources or experts," she said.
"We moved to Christchurch and Georgia went to see her school nurse, she just wasn't coping - she told us to really push it and we went to our doctor.
"The waiting lists were still huge … we were just left there dealing with a child with a life-threatening illness and that was bloody scary."
Toms said she and her husband were in a fortunate position to be able to afford private care for Georgia - with specialist psychologist and nutritionist/dietician costing hundreds of dollars a session.
But that was unacceptable to her and she felt all Kiwis should be able to get help for an issue that could - and does - kill so many.
Toms said Georgia started suffering during the lockdown - a combination of anxiety around the upheaval and being out of school and away from her friends and routine, along with the pressure of social media and diet culture.
"She wasn't eating, she was crying when she went to eat - at first I thought it was just the stress of lockdown, but she got skinnier and skinnier," Toms said.
"She was sleeping a lot, then she stopped hanging out with her friends and she wasn't herself at all.
"I lost my daughter."
Unlike many young people, Georgia turned to her parents for help.
"It was horrendous ... it was heartbreaking," Toms recalled.
"I didn't really know anything about eating disorders, I didn't know what to do
Since moving to Christchurch Toms has joined a parent support group, which revealed that the issue of eating disorders is not just serious but growing at a rapid pace.
"It's dire," she said.
"It's actually terrifying ... It's a crisis ... I am gobsmacked that we have a health system that does not provide enough help for these kids - why? Are we not yelling enough? Are we not loud enough?"
Toms has started a petition calling on the Government to step in and provide more urgent expert care and subsidy assistance for young people with eating disorders.
The petition went live today - and you can sign by clicking here.
It states:
"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."
Toms hoped the petition would get support across the country and make a difference.
"The situation is shocking - we cannot just be okay with this," she said.
"This should not be happening in New Zealand, we should all have good quality health care and the chance to live the best life that we can."
Toms supported Georgia to speak about her year of dealing with her disorder.
The teen said she was "going well" with her treatment and was positive about her prognosis and future.
But it was not always that way.
She got to the point that she would suffer panic attacks when she saw food, smelled food or sat down to eat.
She simply could not function properly and was worried for her health.
"It's a mental illness," she said.
"It has been scary going from having three meals a day to sometimes not being able to eat at all in a day.
"I was losing function ... Later I found out you can lose your period, it can make you infertile and you might not be able to have kids, your organs can fail - and that can be really scary because it can happen so fast, you don't know things are shutting down until it's actually happening.
She was seeing a dietician and psychologist and found them both helpful.
"My dietician has had an eating disorder and she lets me know how it feels - I find it helpful talking to someone who has been through it, other people don't really get it, they don't really know how severe it can be in your mind.
"I think there's a lot of people out there that don't let anyone know they are going through this - a lot of people find it hazard to talk about."
Georgia said for her, the turning point came when she got "fed up".
"I was fed up about not being able to eat, I was fed up about having panic attacks," she said.
"Young people need to find someone to support them - I was lucky because my mum knew what to do and she knew how to get me help.
"But some people don't have a good family, so they should talk to a school nurse, a counsellor or someone else.
"The longer they stay in the disorder, the longer it will be for them to get out."
Christchurch dietician and nutritionist Victoria Schonwald said she had been "overwhelmed" with people needing help for eating disorders.
"It's a pretty scary situation, the last few weeks have been worse," she said.
"I have parents calling up literally crying to me for help.
"There is just no support and they don't know where to go."
Schonwald said initially GPs diagnosed eating disorders, then referred the patient to the Canterbury District Health Board's specialist eating disorder unit which served the entire South Island.
There was a strict criteria there for who got seen, and even then the waiting list was six to 18 months in some cases.
"Some can't access the system ... others are sent home to die, basically," Schonwald said.
"I can only do so much."
She had even started treating some for free or at discounted rates as they could not afford to pay full price but desperately needed help.
She supported Toms' petition and hoped that more experts could be trained and more funding allocated to help patients.
"If someone is at the height of their eating disorder they can be losing a kilogram a week and if they have to wait that long… they end up becoming so so sick," she said.
"There's almost nothing you can do for them - well, you can, but it is much more tricky.
Schonwald started a parent support group among her clients so they could come together and share information.
While she could help with the nutrition side, she was limited in the other areas like psychotherapy.
The parents coming together meant they could share their individual information and help and support each other.
"This is about so much more than just the food," she said.
"I'm also trying to work with others to see if we can set up a community-based team outside the hospital but it's really hard to find people who are both passionate about this and have done the right kind of work."
Schonwald has recovered from an eating disorder herself and was committed to helping where she could.
Last year's lockdown had pushed more young people especially into eating disorders, and now there were people begging for help that simply was not there.
She said while many people used the period to eat healthily and do more exercise and had no issue, others were genetically predisposed to disorders.
"In those people, a switch kind of flicks and the eating disorder will start," she explained.
"Then it becomes really hard to eat and the experience of eating, they become so anxious about."
She said there was, frustratingly, little awareness about eating disorders and treating them was not just a case of "eating".
When a person without a disorder ate, the chemical dopamine was released, making them happy.
But in an eating disordered person, that dopamine only hit when they did not eat.
"So the anxiety around eating is so heightened," she said.
"It's like having someone scared of spiders, they don't want to be anywhere near them… it's really complex though."
Schonwald said Toms' petition was "amazing" and she hoped it would raise concern within the Government and health sector.
"I am just hoping that people will read the petition and understand that we need action - now, she told the Herald.
"We need more people who understand this, it's really serious - someone needs to jump in now or people will die.
"There's no other medical condition that gets put on the back burner as much as eating disorders to - and I just don't understand it."
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 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)
• WHATSUP: 0800 942 8787 (1pm to 11pm)
• DEPRESSION HELPLINE: 0800 111 757
• SAMARITANS – 0800 726 666.
The 36-year-old died on December 19.