27 Nov 2020

'We're going to lose kids' - mother urges govt to boost funding for eating disorder treatment

From Checkpoint, 5:07 pm on 27 November 2020

The mother of a teenager with anorexia and bulimia says children will die unless the government puts more money and resources into treatment for eating disorders.

The demand for services has more than doubled this year, according to Eating Disorders Association NZ and it says the situation has reached crisis point.

It says children as young as eight are waiting weeks or even months to be seen by specialist services, despite having life-threatening illnesses.  

Bridget told Checkpoint her teenage daughter got seriously ill with anorexia and bulimia in February. She was told the wait list was six months for a publicly-funded community treatment programme, after initially taking her daughter to a GP.

"After physically assisting her and so forth she then said, 'just go home and eat', which, to a child that's terrified of food is unfortunately not very helpful," Bridget said.

"I'm sure her heart was in the right place, but it just wasn't terribly helpful. And she unfortunately sent the referral to the wrong place.

"I don't think that's her fault, I think the GPs need more information and education out there on how to handle these eating disorders, and where to refer them to, according to their district.

Health professionals have been warning the health system is desperately stretched.

Photo: 123rf

"It is quite a complicated system from what we found out. You get referred to mental health services first before you get then sent on to a specific eating disorder facility.

"We saw a private psychologist and once the psychologist sent it to the right place, we got a phone call saying there was a five to six month waiting list, which broke my heart.  

"I tried then to access private care, and we were also told that would be an eight week wait, which watching my daughter, we just didn't have eight weeks. Day by day, you could see the deterioration.

"We were just desperate for help but it got to the point where she had to be admitted to hospital because she got so physically unwell. It is a psychiatric disorder that has severe physical ramifications.  

"We ended up in hospital and that actually escalated us up the list to get into the actual eating disorder specialist care. But it also means that it's probably bumped somebody down the ladder as  she got bumped up. And that concerns me a lot, that somebody else was not getting the care they deserve."

Bridget's last name has been withheld for privacy reasons.

She told Checkpoint because her daughter is 17, she did not qualify for Starship Hospital, which Bridget believed would have more specialist treatment for eating disorders.  

Eating Disorders Association of NZ said children as young as eight were waiting weeks to be seen for life-threatening eating disorders like anorexia.  

It called on the government to set up a specialist-led panel to investigate ways of providing better services and treatment for eating disorders, which have the highest mortality rate of all psychiatric illnesses.  

Association chairperson Nicki Wilson told Checkpoint the number of people needing help had skyrocketed in all age groups.  

"It really is at crisis point, we're really concerned," she said.  

EDANZ is a voluntary organisation with a support line for people to get help or information on eating disorders. Wilson said compared to 2019, they are getting four times the number of phone calls.  

"Really busy, and we know that the DHB services are experiencing at least double the demand on their services this year. And private connects, of which there are three or four in New Zealand only, are reporting three to four times what they have experienced [at] the same time last year.

"And people are having a long wait for treatment when they receive a diagnosis.  

"Eating disorders are treatable illnesses. And when somebody is diagnosed promptly and referred to evidence-based treatment immediately - and by immediately I think like any life-threatening illness we're talking about very, very quickly, within a week or two - then the suffering is less, the severity of illness is less, the length of time that people are unwell is reduced, and they get better quickly.  

"At the moment people are waiting six to eight weeks. We've heard cases of people waiting up to nine months to be seen in the DHB-funded specialty services for treatment.

"People are becoming very ill, and actually ending up in hospital in a life-threatening situation, requiring far greater intervention and length of treatment than would have been necessary otherwise.

"And it's unnecessary. The services simply are overwhelmed, people are working within them are passionate and hard-working, and they just do not have the capacity to meet the demand."

Wilson said EDANZ have been working with services and met with clinicians across the country, discussing possible short-term solutions to bridge the gap.  

"Long-term we are looking for a government-led review of services."

Lives are at risk, she said, and her organisation has heard of people as young as eight and as old as 65 waiting for treatment.  

"They are ending up going to the emergency department, and it's at that point that they are being admitted into hospital for life-saving treatment.

"Eating disorders affect people of all ages, all genders, all socio-economic groups, nationalities. Eating disorders have always affected a cross-section of the community.
"So there is nothing new about eight-year-olds becoming very ill with an eating disorder. And I think that at the moment we are witnessing a larger number of people becoming ill, so we are seeing more of every age group, including those young ones.

"Because the services are stretched they are becoming more unwell than they would have if the services were equipped to cope."

Wilson said she does not really know exactly why the numbers have risen so sharply as there has not been a review of services for over 10 years, but they have seen the surge since Covid-19 lockdowns.  

"We know that mental health conditions generally have worsened [during Covid-19] and we think it's part of that. There's heightened anxiety and uncertainty, there's been a lack of structure and even connection during lockdown. Anxiety and depression have increased in the population generally.  

"So it's the worsening of conditions in some people who are already unwell, and there are new cases either being detected and diagnosed or occurring."  

The evidence-based treatment for eating disorders is family-based, she told Checkpoint.
"It's being fed within your community, within your own home, and just normalising life as soon as possible, so outpatient treatment is what we need.

"We are asking the government to review the current services, and to understand that the current capacity - the resources that are in the DHB-funded eating disorder services - are not adequate.  

"They are stretched, demand is not being met, and we would like to see that led by government. We think the Ministry of Health needs to review what is currently being provided.  

"We made a submission to the mental health inquiry a couple of years ago and we were disappointed that we didn't see any response to the problems that we were highlighting and some of the solutions that we were suggesting back then.  

"They have not gone away, they've got worse, and we are asking for some attention to the situation."

She said workforce needed to be increased and there was a need for GPs to receive more education.

"They need resourcing and support, they're crying out for help, they are telling EDANZ that they are diagnosing a patient and then holding them and monitoring them on a weekly basis, and watching them deteriorate over weeks as they're waiting for them to get into treatment."