An Illawarra woman who has spent months in hospitals being fed through a tube, says she can’t find the strength to fight any longer.
She’s spent more time in the region’s hospitals than in her own home in the past six years.
With no designated beds for eating disorders in the Illawarra, the woman has been in and out of regular wards as doctors struggle to keep her vital signs in the normal range.
Anorexia has destroyed my life and I guess I am now just waiting around until my body gives up.
By her own admission she’s spent more time hospitalised than at home.
“I have given up on treatment now, I can hardly walk, I need help to do most things,” she said.
“Anorexia has destroyed my life and I guess I am now just waiting around until my body gives up.
“Sorry to be so miserable, I gave up a fair while ago now and just can’t see the point.
“There are no services for people who are medically unwell anywhere they just resort to medical wards that have patients Ng fed (she has a thin plastic tube through her nostril, down her esophagus, and into her stomach so she can be given food).
“My death or life won’t change how eating disorders or anorexia in particular is managed because one in five sufferers die and it hasn’t changed anything so far. I do want to see change, not for me anymore but others,” the woman said.
“I don’t want to see another young person be stuck in a medical ward in a public hospital that’s not equipped to deal with this condition … where staff have preconceived ideas about the sort of person you are, and where a lot of the time you become worse mentally and sometimes in my case physically too.”
She is one of thousands living in a state that offers just a handful of designated eating disorder hospital beds. Living outside Sydney exacerbates the feelings of isolation.
Nine years ago the Mercury spoke to Kiama woman Rebekah McAlinden who considered herself recovered.
Just months later though, she relapsed “quite badly” and required hospitalisation to be medically stabilised.
For the next two years she had eight hospital admissions at Sydney hospitals because services in the Illawarra “simply were not adequate enough to meet my needs at the time and the waiting list for the Illawarra Eating Disorder Service was far too long”.
Rebekah is recently home from another eight-week stint in a Sydney hospital. She takes part in a day program at the hospital once a week, the cost of regular travel to Sydney taking its toll on her body and mind.
Rebekah has spoken publicly yet again to highlight the fact that not much has changed in 10 years.
Men and women are still dying, others struggling to find the support they need in the Illawarra.
With roughly 10 specialist eating disorder beds across the state – none in the Illawarra – and a support service that is considered under staffed, overbooked and falling short of the region’s needs, Rebekah and others like her, are pleading for change.
Shellharbour MP Anna Watson has called on the government to step up.
In 2013 the NSW Department of Health produced a five-year Service Plan for People with Eating Disorders.
“That service plan has now entered its final year and still the Illawarra is without a single specialist eating disorder bed,” Ms Watson told NSW Parliament earlier this year.
“I take this opportunity to renew my call for an eating disorder centre to service the needs of the Illawarra. I believe that our hospital's redevelopment offers us a golden opportunity.
“That would be incredible,” Rebekah said. “I can’t see them actually doing it, but it would be. There are so many people down this way suffering with EDs who would benefit enormously from that.
“I suspect getting staff who specialise would pose some difficulty but that would be an incredible step forward. Even just with the Illawarra Eating Disorders Service - more funding for more than two to four specialists there would be huge.”
Kiama MP and Parliamentary Secretary for the Illawarra, Gareth Ward remained non committal.
“I acknowledge her calls relating to eating disorders,” he responded in Parliament. “The clinical services plan for the hospital has been released and that indicates the sorts of services that are required.
“As communities change, so too do their medical needs, and currently the department is ensuring that prior to going to tender we have exactly the right mix of services that we can provide for that $251 million. When I get … an update on where that is at, I will be more than happy to ensure that the member for Shellharbour is fully aware of those services.”
A mum’s take
South Coast mum Keeli Cambourne says an eating disorder specific unit as part of the Shellharbour redevelopment would be great for the region.
“They have the adolescent mental health unit at Shellharbour so it wouldn't require much more infrastructure just finding for full time properly trained staff.”
Read more: The crippling expense of an eating disorder
She said inpatient beds were necessary but more important was an outpatient program to not only offer support but form a “validation that these eating disorders are serious mental illnesses.”
It’s been three years since her daughter Molly had her last admission to hospital.
“Even though she and us as a family now count ourselves among the lucky ones, I am constantly reminded about the increasing lack of services available for those still fighting this insidious mental illness,” Keeli said.
“Friends Molly made through her journey and who are still battling through their eating disorders are finding it even harder to get the help they need.
“Last year a mother started a GoFund me page to try and raise enough money to buy two years' private health insurance to get her daughter into a private hospital.
“She needed to prove she had the finances to pay upfront for those two years before she could even attempt to get admission to a private facility.”
Keeli said those with a mental illness can access up to 10 free psychology sessions through a GP generated mental health plan.
But the expertise needed to support those with an eating disorder is “out of the realm” of most psychologists.
“Despite the devastating impacts across the entire demographic, it seems state government promises to help sufferers was “nothing but empty words.”
Illawarra Shoalhaven Local Health District acting executive director of mental health Julie Carter said she recognised the seriousness of eating disorders and the devastating impact on sufferers and their families.
However she would not be drawn on the need for a dedicated eating disorder service as part of the Shellharbour Hospital redevelopment.
“Treatment for eating disorders is complex and needs to consider a consumer’s mental and physical health needs,” she said.
“Assessments through ISLHD’s outpatient Eating Disorder Services are provided as soon as possible to make or confirm diagnoses, assess the urgency of care, refer to other services or facilitate higher intensity care as required.
“Where a person’s illness requires hospital admission, they are admitted to either a mental health unit or medical inpatient unit at one of the district’s hospitals.”
Ms Carter said the arrangement would continue when the redevelopment of Shellharbour Hospital is complete.