Help may be on the way for eating disorder patients as the Ministry of Health starts talks with stakeholders and those affected to plan a future strategy. Photo / 123RF
The Government is finally planning "a way forward" for eating disorder services - and while advocates welcome the breakthrough, after begging for years for action, they say if a strategy is not finalised and funded urgently people will die waiting for help.
The Ministry of Health confirmed it had started to speak with stakeholders in the eating disorders community in a bid to inform "policy advice around future support and treatment".
While the Eating Disorders Association of New Zealand (Edanz) welcomes the move - saying advocates' crucial expertise has long been ignored - it's calling for a much more expedited approach and "urgent strategy".
The Ministry action comes months after the Herald started highlighting New Zealand's rapidly increasing rate of eating disorders and a severe lack of support, funding and specialist care for those suffering.
One woman who has effectively been sent home to die - deemed too sick for ongoing treatment by her district health board - spoke to the Herald about her case in the hope changemakers will get a better insight into the problem.
Her story echoes many others shared with the Herald across New Zealand - from patients and parents frustrated at the lack of specialists, funding, hospital beds, and support along with increasing waiting lists.
Since 2014 the number of Kiwis admitted to hospital with eating disorders has increased 210 per cent.
In April Health Minister Andrew Little told the Herald the situation was "concerning" but maintained there was enough being done to address the shortfall in services.
He said a $1.9 billion mental health package was enough to plug gaps and make improvements.
But in June he conceded the ball had been dropped around mental health and he was "extraordinarily" frustrated that changes were not obvious.
The Herald can now reveal the Ministry of Health is now looking specifically at eating disorders - what is lacking for patients and what needs to change.
Mental health specialist services group manager Philip Grady said stakeholder meetings were being held "to understand needs specific to those struggling with eating disorders and to plan a way forward".
"Ongoing conversations" were planned with other service providers and users, the lived experience community, and representative organisations.
"Our most recent meeting with Edanz was last week, in which we discussed priorities for short, medium and long-term actions, particularly around increasing access to treatment in the early stages of an eating disorder developing," Grady said.
"The understanding we have gathered is being used to inform policy advice around future support and treatment.
"These meetings are in addition to ongoing engagement with members of the lived experience community which are intended to ensure that our understanding, and any planned approaches, are informed by the unique insights of those with first-hand knowledge."
Grady said collaboration around the design and integration of services was a "key part" of the Ministry's next steps in "transforming" New Zealand's approach to mental health and wellbeing".
"The Government is committed to ensuring people get support for mental distress, including eating disorders," he said.
Edanz chair Nicki Wilson welcomed the collaboration but said it was very early days.
To her knowledge, the wider sector had yet to be included in or consulted on the "design" which she said was concerning.
Her understanding after speaking with the Ministry was that any plan devised would not be rolled out till after Budget 2022.
The Ministry could not comment on any funding timeframe.
"There is an immediate need to develop a strategy for implementation well in advance of Budget 2022," Wilson said.
"Edanz could be providing so much more tangible support to individuals and families - and to the health care providers -than we are currently able to without funding, recognition and inclusion."
Wilson was critical of the Ministry's past failure to properly consult with the sector about how to best help those struggling.
"By only consulting with district health board service providers, only people sick enough to make it onto their lists will be accounted for," she said.
"There will be no improvement to this ever-growing crisis and the severity of the issue will continue to be overlooked.
"We know a significant number of people can't access DHB waitlists, and many resort to the private sector, which is also overwhelmed.
"We have a serious lack of clinicians in public and private, so even those who can afford private treatment have long waits to be seen."
Edanz's biggest concern was that people were becoming increasingly unwell as they waited for healthcare.
"The suffering of individuals and their families is unnecessary and unacceptable," she said.
"These are treatable illnesses.
"The community can't wait another year for action - a strategy needs to be developed ahead of 2022, and we need immediate funding … people are suffering."
Ednz also called on the Ministry to start collecting full data around eating disorders.
Currently, it only counts those who access "specialist support" through the public system including medical in-patient admissions, outpatient care including psychological therapies, residential care and day programmes, and home-based support services.
The data does not include patients who do not fit the criteria for referral, who are forced to fund their own treatment privately.
Wilson said those people feel "lost in the system" and "ignored".
Patients felt that help was only possible if they were severely unwell, underweight or on their "deathbeds".
"They only admit you if you are literally nearly dying, or they see you have a chance of recovering," said one.
Another was actually looking forward to becoming more unwell so she would fit the criteria for help.
"We are told to reach out for help but when we do, we either don't get taken seriously or we aren't sick enough to warrant treatment.' she said.
"It scares me to think how unwell I might have to get before I will be able to access treatment … I cannot wait for the day where I am unwell enough to access treatment for my eating disorder.
"By that time though, it might be too late."
Little would not comment further on the matter, saying eating disorders fell under the responsibility of Associate Minister of Health Dr Ayesha Verrall.
She acknowledged they were a "serious issue" in New Zealand and said she was committed to "ensuring people can access the support they need".
"That's why I have asked officials to assess what unmet needs there are," she said.
"I have met with the Eating Disorders Association of New Zealand, to discuss the impact of these illnesses, and have further talks scheduled as part of an ongoing conversation with Edanz about how best to support New Zealanders experiencing an eating disorder."
National's mental health spokespman Matt Doocey, who has been pushing for the government to do more for people with eating disorders, backed the call from Edanz.
"The Labour Government promised Kiwis they had a plan for mental health but are now telling parents of children with a life-threatening eating disorder they have to wait another year before action is taken," he said.
"Sadly some of our most at-risk young people won't be able to wait that long."
A woman "broken beyond repair" by anorexia says she has effectively been sent home to die because she is "too sick" for treatment under the public health system.
Desperate to live and recover from the illness that has gripped her for more than six years, she is now trying to save her own life but fears she won't be able to do enough.
The woman has been hospitalised multiple times - as her weight plummeted to near-fatal levels causing her organs to start failing - fed through a nasogastric tube and admitted to a specialist eating disorder unit.
But at just 24 she was advised to form an "end of life plan" and consider palliative care.
"Nobody, at 24, who is begging for help should have to face this," she said.
"I have absolutely no hope of receiving adequate healthcare for my eating disorder through the public system.
"My only hope is that I can work with my (private) dietician and use my own strength to recover.
At this point I'm unsure whether this is going to be enough, or whether this illness is going to claim my life, like it has many others.
The woman, who wanted to remain anonymous to protect her privacy, said in the depths of her anorexia she would go "weeks without showering, months without leaving the house".
The Herald cannot publish specific details of her lowest weight for safety reasons but she was astonishingly malnourished and frail.
"It makes for a very miserable existence," she said.
"It's like a constant war going on within your own brain - between the 'real' you and the anorexia - leaving no space for anything else in your life," she explained.
She said her treatment under the public system was all about gaining weight and becoming medically stable physically.
There was no - or very little - focus on her mental health.
Recently she had been "begging and begging" for help and was eventually offered a general dietician who had no specific experience with anorexia, and six sessions with a psychologist.
"But by the time they offered this, I was severely underweight and my brain was far too malnourished to be able to engage in therapy at all," she said.
"The (specialist eating disorders unit in her area) has refused to treat me either inpatient or outpatient, as my illness is 'chronic and enduring'.
"Essentially they don't want to waste time on me, as they think it's highly likely I will never recover.
"This has left me feeling like I don't matter, I don't deserve help, and at times believing that they're right and maybe I will never recover."
The woman firmly believed all eating disorders were treatable and she wanted to live, recover and enjoy her life.
"Unfortunately I am not one of the lucky ones the (district health board) are doing nothing to help me - despite me being severely underweight, in their words 'at high risk of sudden death'," she said.
"I am very lucky to have found my own private dietician, who specifically specialises in eating disorders - having recovered from an eating disorder herself.
"She has given me hope, and we are slowly working on a plan to get my health - and hopefully my life - back.
"I want to be free from this illness, to be able to be in a position where I can help others who are going through this same torment.
"I want to be proof that recovery is possible; I want to move on with my life, fall in love, get married, start a family; I just want to live…"
The woman said unless urgent and sweeping changes were made people would die - as some of her friends had.
"Receiving the right care is vital… but unless I am literally on my deathbed, that isn't going to happen," she said.
"Nobody should be told - as I have in within the last two months, and many times before - that you're not 'sick enough' to deserve treatment … or that you're at high risk of dying from your eating disorder yet nothing is put in place to prevent this."
She had a strong message for the Government and Ministry of Health but worried it would fall on deaf ears.
"People are dying as a result of their eating disorders… I have lost a close friend this year who was plagued by anorexia to the point she couldn't bear to continue living.
"Anorexia has the highest mortality rate of any mental illness; so why is the 'treatment' available so abysmal?"
She urged those in power to read her story and educate themselves on what was happening on the front line.
Her illness had prevented her from working, studying, contributing to the community in any way.
"I've watched friends progress in life while mine has been at a complete standstill," she lamented.
"I've missed so many opportunities … chances to make memories ... I couldn't have been more miserable.
"It has stolen years of my life that I'll never get back."
If you need urgent help, reach out to your GP or local mental health provider.
• Eating Disorders Association of New Zealand 0800 2 EDANZ info@ed.org.nz
• New Zealand Eating Disorders Clinic
&BULL: Eating Disorder Carer Support NZ
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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