The number of Kiwis suffering eating disorders continues to increase and despite health authorities promising they are "working hard" to provide more help and support, those in the throes of serious conditions say it's too little and will be too late for some.
Last year the Herald began highlighting New Zealand's rapidly increasing rate of eating disorders and a severe lack of support, funding and specialist care.
In July the Ministry of Health confirmed it was planning "a way forward" and had started to speak with stakeholders in the eating disorders community in a bid to inform "policy advice around future support and treatment".
In October it established the Eating Disorders Advisory Group - made up of representatives from specialist eating disorder services, people with whānau and lived experience and people working in primary care - which meets monthly and reports back to the ministry.
The MoH says additional training for GPs and school counsellors has also been made available and that "work to improve the early identification and treatment of eating disorders will continue as this is the best way to avoid mild to moderate disorders from becoming acute".
While the MoH work is welcomed by eating disorder survivors, patients, advocates and service providers - they say it's barely making a difference on the frontline and change is not coming fast enough for those in the most desperate need. People will die waiting for help and more urgent action is needed for those suffering now, they say - more inpatient beds, more trained specialists, more funding for counselling and other crucial support.
MoH deputy director general of mental health and addiction Phil Grady said the increasing numbers of sufferers was "consistent with international trends".
"Services are working hard to respond to people who present and it is positive that more people are able to access services," he said.
"Work to improve the early identification and treatment of eating disorders will continue as this is the best way to avoid mild to moderate disorders from becoming acute."
Grady said a "system and service framework" was under development and aimed to "give direction to those responsible for publicly funded health system policy, design, service commissioning, and delivery for mental health and addiction services".
"We are transforming the way mental health and addiction services are provided in New Zealand to focus on early intervention so people are supported to stay well."
He referred to the 2019 Budget where $455 million was earmarked across four years to "expand primary mental health and addiction services" and enable people "to access mental wellbeing advice and support, when and where they need it".
"These services are now available throughout the country and are available to anyone with mild to moderate needs, including those with eating disorders," Grady said.
He said after the MoH met stakeholders last year, workforce development was identified as a priority area.
"Additional training in family-based treatment - the leading evidence-based approach for treating young people who experience a range of eating disorders - has been provided to clinicians working in our infant, child and adolescent mental health services so that more clinicians are equipped to treat young people."
The Herald spoke to three women grappling with eating disorders including anorexia, bulimia and binge eating disorder.
All three had to fight - and were still fighting - for help.
Kate Van Elswijk has been trying to overcome her disorder for nine years and said she had been "in and out of treatment" and "on many waiting lists" in both the public and private health systems.
"I have been on the waiting list for the public health eating disorder treatment system for the past 18 months," she told the Herald.
"I have not been seen as my weight has reached a stable level.
"It feels like there is no hope of recovery and no hope of a better life as without proper therapy it is almost impossible to deal with the trauma that has influenced the eating disorder and maintained it for so long."
Van Elswijk was constantly worried about her health.
"It keeps me up at night with fear that I will never recover or be able to work through my trauma and feel better," she said.
"I feel like eating disorders are still considered purely a weight-based disorder rather than weight being a symptom of the psychological disorder.
"The waiting lists are triaged by weight and the mental state of the client isn't considered."
Van Elswijk hoped the MoH would provide more help for those suffering now.
"People are dying and suffering from eating disorders, there needs to be more resources put into treating them: training more psychologists and specialists, more funding and easier access to treatment," she said.
"There needs to be a shift in thinking that eating disorders are physical disorders when they are actually mental disorders with physical symptoms.
"I am also legally blind and I have always received help for my disability whereas I have struggled so much seeking treatment for my anorexia, depression and anxiety."
Another woman said she had been trying to get help since 2019 and said her battle had been "debilitating and isolating".
"It makes you feel as though your suffering is invalid and what you are experiencing doesn't matter enough to be relieved," she said.
"My eating disorder has cost me friendships, relationships, my tertiary education and much more… it worries me greatly."
She said her health issues were endless, including extensive dental issues as a result of her disorder.
She cannot work enough to afford dental work and was terrified she would "never be out of debt" as she funded not only her healthcare but the bingeing aspect of her illness.
"I fear that my quality of life will continue to deteriorate to a point I won't see any purpose or hope. I fear for the long-term health consequences such as the damage to my heart and kidneys and fertility, but most of all the emotional strain," she said.
"Knowing there is little to no support available makes thinking of my future difficult because I can't see a way out of this disease without support.
"I wouldn't wish living with an eating disorder on anyone."
She felt eating disorders were seen by many as insignificant.
"They patch up the physical issues when they arise and want nothing more to do with it, ignoring the root cause completely," she said.
"For a disease with the highest mortality rate of any mental illness, it is treated like a game.
"If it were a physical disease with a high mortality rate the treatment would be completely different."
She hoped the MoH would move to do more - and fast.
"If it were your daughter, your sister, or your mother, would you want to see them suffer for months or years on end until they end up on the brink of death before they are able to access help?" she asked authorities.
"Or would you want them to get help at the root of it?
"I refuse to believe you would be content with watching someone you love slowly die before your eyes hoping that eventually, somehow, they can be helped."
A third woman has been seeking help for two and a half years.
She has been through multiple assessments - for public and private treatment - and on waiting lists for months at a time.
However, she either did not meet the criteria or could not afford the treatment she needed.
"It takes a huge amount of courage to get to the point of asking for help, so to then be told that you don't meet the criteria, it feels like a real slap in the face," she said.
"We are constantly battling this… in the help we seek, which is just so shocking and backwards.
"The scariest part of this illness is the hopelessness for life in general; the suicidal thoughts; thoughts like 'I'm not sick enough to deserve help' push me even further down."
She, too, frets constantly about her health.
"I worry that I will just lose hope because if I'm stuck, and the professionals can't help me, then who can?" she said.
"It is also a massive financial burden with the lack of funding. Just one hour-long appointment with a specialist in a private clinic can set you back $350, and with the intense amount of therapy that it can take to recover, it takes a lot of money - let alone time and courage."
She hoped the Government would hear her - and others' - stories and step up their efforts to help.
"I would like to see more funding for specialist eating disorder providers, and subsidised treatment for those suffering," she said.
"Eating disorders are first and foremost a mental illness, and should be treated in the same way."
A paediatrician who has specialised in adolescent health for 15 years said there had been a significant increase in the number of young people presenting for treatment for eating disorders.
"We have seen more than a doubling of young people requiring inpatient treatment for their eating disorders over the past two years, and the numbers of young people being admitted are over five times what the numbers were six years ago," she said.
"There are many factors contributing to the increase in demand for services - with a worldwide focus on obesity, social media influences and dieting all contributing.
"On top of this, the pandemic has created a time of great uncertainty, significant anxiety and also a renewed focus on the things that you can control.
"There are a lot of complex things at play here and I don't think we can blame any one thing – however, the pandemic has created what appears to have been a perfect storm for the development of eating disorders."
The paediatrician, who spoke on the condition of anonymity, said despite the increase in cases, there had not been the same increase in health services.
"This does mean that there has been a significant increase in the waitlists for treatment in a number of services," she said.
"A lot of the young people I see at the time of assessment are requiring an inpatient admission - this means they are very unwell and require admission as they have significant medical instability.
"They are at significant risk of death if they do not receive close medical monitoring and treatment."
She said those not requiring hospital-level care were usually treated by their GP and during the pandemic, those doctors had been "overwhelmed" by Covid-related care.
"It is a really big ask for GPs, who often have very little training or expertise in this area, to step up and meet this demand.
"Alongside this, the specialist eating disorder services have not had any significant increase in their funding and have been struggling with the limitations and demands. A lot of services were struggling to meet demand prior to the pandemic and now things have significantly worsened."
She said it was "essential" to have better services for eating disorders, particularly for young people.
"All the evidence points to young people doing significantly better with early access to specialist treatment.
"If they access specialist services and get the help they need early on, most young people will fully recover from their eating disorder.
"As with most things though – the longer you wait for treatment, the worse things usually get and there is a direct correlation between longer duration of an eating disorder, and longer times accessing appropriate treatment and decreasing probability of fully recovering from your eating disorder."
National's mental health spokesman Matt Doocey has been calling for the Government to urgently address eating disorders for the past year - at least.
He said data provided to him showed a shocking increase not only in eating disorders but in the time people were waiting for help and being admitted to the hospital.
He was aware of what the Ministry of Health had been doing in response but said it was far from enough.
"What we see here is just another working group - and we've got some real concerns that the right health professionals are not represented," he said.
"It kind of feels like it's a bit of window dressing at the moment - and you could argue that in the past 12 months, nothing has happened."
Doocey said the "shadow pandemic" of eating disorders was hugely concerning and needed specific targeting rather than being included in general mental health responses.
"The Government has failed to act. A stocktake is needed on the actual problem, to understand what the gaps are and the level of need and then we can develop an investment strategy.
"The Government doesn't actually have a plan. Unfortunately they haven't really thought about eating disorder services, which clearly needs its own strategy.
"We need a very clear strategy for eating disorder services in New Zealand. This is a matter of urgency."
Eating Disorders Association of New Zealand spokeswoman Nicki Wilson slammed the ministry's attempts to address the issue.
She said the advisory group's focus was too narrow and there were "gaps in the membership" meaning important areas in the "treatment continuum" were missing.
Further, she said long-term planning was useless to those suffering now.
"How long are these stated health reforms likely to change things? We have a crisis situation, worsening rapidly, that is not being addressed.
"There is unnecessary suffering and worsening of illness for a growing number of people."
Wilson said the Government needed to allocate "targeted funding" for eating disorders in the next Budget.
"We need targeted funding to specifically address the needs of those with moderate to severe disorders immediately.
"This funding must be at a level which provides resourcing to ensure timely diagnosis and prompt evidence-based treatment on a nationally consistent basis."
She said more focus was needed on short-term solutions, which were as critical as planning.
"Early identification and prompt intervention are necessary to reduce the severity, duration and impact of the illness.
"We must ensure people of all ages have access to services as soon as they are needed:
early in the development of the illness, with immediate access to treatment and support."
EDANZ call 0800 2EDANZ
Lifeline: Call 0800 543 354 or text 4357 (HELP)
Suicide Crisis Helpline: Call 0508 828 865 (0508 TAUTOKO)
Need to talk? Call or text 1737
Depression helpline: Call 0800 111 757 or text 4202
For children and young people
Youthline: Call 0800 376 633 or text 234
What's Up: Call 0800 942 8787 (11am to 11pm) or webchat (11am to 10.30pm)
The Lowdown: Text 5626 or webchat
For help with specific issues
Alcohol and Drug Helpline: Call 0800 787 797
Anxiety Helpline: Call 0800 269 4389 (0800 ANXIETY)
OutLine: Call 0800 688 5463 (0800 OUTLINE) (6pm-9pm)
Safe to talk (sexual harm): Call 0800 044 334 or text 4334
All services are free and available 24/7 unless otherwise specified.
For more information and support, talk to your local doctor, hauora, community mental health team, or counselling service. The Mental Health Foundation has more helplines and service contacts on its website.c="https://media.nzherald.co.nz/webcontent/infographics/6589/GM_PAGE2.jpg" />
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