Eating disorders: ‘Your life matters’ – survivor once sent home to die joins desperate calls for Govt help

A mother desperate to help her sick daughter – and hundreds of others on waiting lists for life-or-death treatment for eating disorders – will present a petition to Parliament tomorrow calling for urgent support and resources.

And a woman who was sent home to die at the height of her battle with anorexia applauded the petition, saying there was “absolutely nothing” in place to help most of those affected.

In April Christchurch mother Rebecca Toms launched a petition begging the Government for more urgent expert care and subsidy assistance for young people with eating disorders and their families.

The petition will be presented to Parliament tomorrow – following World Eating Disorder Day marked today in New Zealand.

The Herald can reveal that as late April there were more than 900 people receiving specialist care across New Zealand’s three eating disorder services in Auckland, Wellington and Christchurch.

There were more than 270 people on waiting lists – and experts estimate there are upward of 100,000 others who need help against potentially fatal disorders but did not meet the criteria to get treatment in the public system.

Many of those pay hundreds of dollars a week for private care including psychologists, psychiatrists, nutritionists and dieticians.

Toms said the situation was simply not good enough.

“There is a gaping hole in our society for the care of those battling this life-threatening illness,” she said.

“There is an unequivocal dismissive approach – we don’t seem to care.”

Toms said since her daughter Georgia, 16, was diagnosed they had been “pushed around the health system.

They had been told specialist units were full and that her disorder “is not severe enough”.

“An eating disorder has the highest mortality rate of all psychiatric disorders, yet our public health system is so under-funded and under-resourced that it is struggling to effectively help,” she told the Herald.

“We have been left to find our own way, dealing with a serious illness. “

Toms found support in a Christchurch parents group who gather regularly to try and navigate the terrifying health issues of their children – some who have had disordered eating since they were young children, others who were frequently admitted to emergency departments on death’s door.

“We were all lost in the system in some way,” Toms said.

“Parents sharing stories about their children being sent home to die with an ‘end of life plan’ because “there is nothing else we can do”; young people turned away because they’re deemed not sick enough.

“There were some parents giving up work to care full-time for their loved ones and others whose children are on the waitlist getting sicker.

“In the private sector it’s no better, not enough experts, long wait-lists and the cost is high.

“We are desperate families, needing urgent, timely care that should be a right.

“What will it take for the changemakers in Government to meet them all the way and finally realise and provide the care they so rightly deserve?

“We are calling out for help, please this time, will someone listen?”

Dietician Victoria Schonwald, who set up the parents group and supported Toms with the petition, said there was more harm being done than good in New Zealand’s healthcare system when it came to eating disorders.

“We have unskilled health practitioners trying to treat a disease which is the most deadly of all psychiatric illnesses,” she said.

“This isn’t their fault – the system is failing patients and the workers who have to care for them.”

“Doctors aren’t provided any formal training, people aren’t seeing psychiatrists for formal diagnoses, and its near impossible to get on a waitlist for treatment.”

Schonwald – who recovered from an eating disorder – said a number of her patients could not afford the help they needed so she treated them for free.

She said some of those needed medical monitoring and needed to be admitted to hospital but there was simply no help for them.

Eating Disorder Association NZ (Edanz) chair Nicki Wilson said the Government needed to admit the mental health system was “failing New Zealanders with eating disorders”.

“We don’t even know how many people in New Zealand are suffering because there is no data,” she said.

“Edanz receives calls around the clock from parents desperate for support, and healthcare workers begging us to continue supporting patients while they wait for treatment … We are stretched beyond our means.

“New Zealand needs to step up and take note of how other countries are successfully treating eating disorders, which are a treatable condition, to avoid the huge drain on the public health system over a patient’s lifetime.”

Toms said the situation was heartbreaking and kept her awake often.

“Late in the night I wake gripping on to hope, my thoughts swirl vigorously back and forth,” she said.

“I’m scared for the future, scared for the now because my daughter has an eating disorder and it’s an unknown territory.

“No one should die from an eating disorder … You can 100 per cent recover.

“Here I find myself supporting my daughter and advocating for change because they are both an urgent need.”

Little said a Budget 2019 investment into mental health 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.

Toms hoped her petition would push the Government to rethink the position – and fast.

Millie's story: People don't realise – we want to live

Millie Thomas knows all too well the lack of help for eating disorder patients in New Zealand.

For 15 years the Auckland woman battled anorexia and one day – after countless stints as an inpatient – was told there was nothing more that could be done.

She was going to die. She should go home and get her affairs in order, look into end-of-life care.

“They took me into a room with my family and literally said ‘this is the end, she’s beyond help,'” she recalled.

“They told us to look for palliative care …That was the last shred of hope gone.

“I was given a couple of weeks to live … I wanted help, I wanted to live.”

Thomas’ mother took her to Australia for private care, desperate and willing to do whatever it took to keep her alive.

“If that didn’t happen – I wouldn’t be here, if I had stayed in New Zealand I would have died.

“I could feel myself dying – I could literally feel my body eating itself, it was horrible.

“An eating disorder is not just some sort of joyride … you don’t want to die … but lives are actually being lost and it’s devastating.”

Thomas has now fully recovered and has dedicated her life to helping others, working as an advocate and recovery coach.

She speaks to people on both sides of the Tasman at all hours of the day who are desperate for a cure – parents, patients, people relapsing who simply cannot get any treatment or support.

Like Toms, the experts and countless others – Thomas is calling for drastic and rapid change to the way eating disorders are treated.

“The stats are all really dire,” she said.

“In New Zealand we’ve got nothing – there’s no help … it’s getting worse and worse.”

Thomas believed a funding overhaul was needed to give eating disorders the priority they needed, rather than generally lumping them together under “mental health”.

More experts, more residential long term care facilities and more prevention was also key.

“So much needs to change … there needs to be more in the community for a start, that’s why I have started flying over to New Zealand to run these lived experience support groups.

“Girls are flying up from the South Island (to Auckland) for the day to attend every time I have a group. If that doesn’t show the gravity of the situation I don’t know what does.

“I don’t even know where to begin with how broken the system is … you can’t expect anyone to get well if things don’t change.”

Thomas said there was always hope, even for people in the most grim situations.

She was living proof of that and she begged the government to sit up and listen.

“Your life matters, you matter,” she said to patients.

“We need to do something – now.

“Lives are actually being lost. It’s not a case of we’re ‘going’ to lose people – they are already dying.”

New Canterbury residential recovery facility run by survivor one step closer

Kristie Amadio is another woman who has fully recovered from an eating disorder and dedicated her time to helping others do the same.

Like Thomas she left New Zealand at the height of her 14-year battle to get professional help overseas.

When she hit every brick wall here Amadio took herself to the US and funded her own recovery.

Refusing to settle with a diagnoses of being “a chronic case” with no hope – she spent seven months in recovery.

“Recovery is possible and more needs to be done to save Kiwi lives,” she said.

“This is why Recovered Living NZ is bringing the first residential not-for-profit eating disorder treatment centre to New Zealand.”

“Eating disorders are absolutely treatable conditions – but it takes a village, and it takes time.

“It is about so much more than treating the illness; it’s about treating the person – their values, beliefs and behaviours, because that is what got them into their eating disorder in the first place.

“Eating disorders affect people of all ages, weights, genders and ethnicities – they don’t discriminate, but they can be overcome.”

The North Canterbury facility is on track to open in mind-2022.

RLNZ’s specialist eating disorder treatment centre will help more and is touted as a world-class quality facility with a wealth of expertise and a “fierce belief in every client’s ability to recover”.

It will be run by a team of highly trained professionals from the US and New Zealand to provide 24/7 residential eating disorder recovery support as well as day and partial programs for people at all stages of their eating disorders.

The RLNZ home will have space for a total of 12 clients at time, six in the residential setting and six in the day and partial programme.

Amadio said it would cost $1.2 million a year to operate and fundraising was off to a great start but she needed another $400,000 to get the ball rolling.

Do you want to help?

Do you need help?

If you need urgent help, reach out to your GP or local mental health provider.

Or if you need to talk to someone else:

• Eating Disorders Association NZ 0800 2 EDANZ or email [email protected]

• LIFELINE: 0800 543 354 or 09 5222 999 within Auckland (available 24/7)

• YOUTHLINE: 0800 376 633 ,free text 234 or email [email protected] 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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