'You don't know if they're going to live to see 13': Mother says Canberra health system failing children with eating disorders (2023)

Late last year, 12-year-old Havenwas admitted to hospital in Canberrafor the second time, suffering from a form of anorexia.

Haven's mother Vanessasaid the experience was any parent's worst nightmare.

"You so desperately want your child to come through this and you don't know if [they are] going to," she said.

"You don't know if they're going to live to see 13 or 14.

"You don't know if readmission is just going to be part of their life."

Vanessa explained that Haven, who is non-binary, began cutting their meals in half during COVID-19 lockdowns, andfrom there, their condition quickly declined, which led to a diagnosis of anorexia nervosa.

"They just didn't cope and all of a sudden they're losing a kilo a week within a matter of weeks," she said.

But Vanessa saidwhile seeing her child suffer was traumatic, her stress was compounded by the treatment Haven received at the high care paediatrics ward at the Centenary Hospital for Women and Children.

Vanessa said that during Haven's three-month hospital stay, they received inconsistent mental health treatment and were seen by several different psychiatrists.

Vanessa said this was particularly problematic because Haven is also neurodivergent.

"We haven't had any consistency with the psych team and if anyone knows anything about autism and children on the spectrum, they need consistency, they need structure, they need things put in place," she said.

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"To get a one-on-one consultation is like pulling teeth."

Vanessa said Haven's experience painted the picture of a hospital system that was not adequately set up to deal with young people with eating disorders, due to a lack of mental health support.

So, Vanessa said she and Haven's father hadmade the drasticdecision to movetheir child interstate, to ensure Haven received the treatment the family said they needed.

Vanessa said Haven's fatherquit his job in order to make the move to Melbourne with Haven, where she says they are now in a hospital far better equipped to deal with the eating disorder.

Haven's mother said since relocating, the family had experienced improved communication and consistency with the treating team in Victoria.

But Vanessa said the decision hadcome at a huge financial and emotional cost.

She said she has hadto stay in Canberra, working two jobs and caring for Haven's sister.

"I just can't drop everything. I need to survive and pay rent," she said.

"I can't just relocate. I don't have the finances for that.

"But I don't want to be apart from them. I want them to stay here, I want them to get well here. I want consistency here.

"I feel sad, numb, scared. I'm also missing them a lot."

'You don't know if they're going to live to see 13': Mother says Canberra health system failing children with eating disorders (1)

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'Very much about treating the physical side'

Rosemary Clifford is a project officer at Mental Illness Education ACT (MIEACT), a service focused on decreasing the stigma around mental health and increasing health-seeking behaviours.

Ms Clifford said she experienced anorexia nervosa as a young person and remembers wanting to be the thinnest she could be — "the lowest number on the scale".

She describes her time receiving treatment in Canberra about six years ago, as being "filled with discomfort", due to what she said was a lack of mental health care.

"My whole stint in hospital was very much about treating the physical side," she said.

"I never got seen by a psychologist, psychiatrist, mental health professional at all, despite the fact that the mental symptoms were actually directly related to my eating disorder."

Ms Clifford said, in her experience, it was common for people with eating disorders to be met with the attitude of "come in, fix the physical stuff and throw you back out".

Now working in the mental health space, she said if that attitude was changing, it was not changing fast enough.

Ms Clifford said, in Canberra, there was still a significant gap between the physical health and the mental health spaces working together.

Initial priority is medical stability, hospital says

Jen, who is 21 years old, has spent almost a decade in and out of the ACT health system.

She said she began experiencing non-diagnosed anorexia at 12 years old and only got a diagnosis of atypical anorexia last year after she sought treatment at a private clinic in Sydney.

Jen said she did not believe the treatment she received in Canberra for her eating disorder was sufficient and felt that her mental health was often forgotten about.

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"I was literally meant to see [a] mental health [worker] every day and saw them once or twice when I was in [hospital]," she said.

"I didn't get a lot of mental health support. I was kind of left to my own mental health coping mechanisms.

"I think that was the big thing I struggled with — getting people to understand I'm not choosing what I'm doing, my head is choosing what I'm doing."

In a statement, Canberra Health Services said, while it prioritised "both the physical and mental health treatment" of a child or young person in their recovery journey, the patient "firstly needed to be physically well enough before they could undertake effective mental health therapy and treatment".

"The purpose of a hospital admission of a young person with an eating disorder is to achieve medical stability as they are in a metabolically unstable condition," the statement said.

"The focus on the ward is to provide medical stability and reduce risks."

It states more "formal therapies" begin when the patient has gained sufficient weight.

"Their poor nutrition means that they have a limited capacity to engage in psychological therapies, which is addressed by re-feeding," Canberra Health Services said.

"Once a young person is medically stable, individual therapeutic interventions are discussed with the young person and their carers."

The ACT government said support was also available for families through the Eating Disorders Clinical Hub's Transitional Clinician — an outpatient therapy service.

But Ms Clifford said more support for families needed to be provided, both during and after a young person's treatment for an eating disorder.

She said the mental health space often forgot about the families involved, particularly in the ACT where parents had to take on a far more active role in treating their children "because there isn't that inpatient care".

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New eating disorder centre location approved

The ACT government has previously acknowledged the limited availability of services to treat eating disorders in the territory, and says it wants to improve accessibility with a new Residential Eating Disorder Facility in Coombs in the city's south.

The Commonwealth government agreed to fund $13.5 million over three years for the development of the centre, with construction set to be completed by the end of this year.

But Haven's mother, Vanessa, said it wasnot good enough that families were waiting for the centre to be built to access more support.

"You don't need a fancy building — I don't know why there's such a wait, things should be implemented now," she said.

"It's really frustrating as a mother to see that you know what needs to be done and it's not being done, and you don't have billions of dollars to get it done.

"If I had the money, I would do it."

Ms Clifford said the wait for the centre could cost lives, and left behind those fighting the illness now.

"It's great it's happening, but it's not going to be around for those parents who are going through the thick of it now and I think that's the problem — what can we do in the interim to provide more support?

"We shifted our whole medical system around COVID, we know we can do this.

"We're not dealing with people who are just going to be uncomfortable for several months, we're talking about some of these young people who won't actually make it — the rate they're going — to the opening of this centre."

Posted, updated


What are 3 examples of disordered eating behaviors? ›

Some of the most common types of disordered eating are dieting and restrictive eating. Others include self-induced vomiting, binge eating, and laxative abuse. (see Dangerous Eating Behaviours for a more complete list). There are several types of eating disorders, including anorexia nervosa and bulimia nervosa.

What goes on inside the body to cause eating disorders? ›

For eating disorders, there are two primary neurotransmitters you need to know about: serotonin and dopamine. Each of these neurotransmitters has an influence in how we think and behave, our personalities, and even perhaps our risk for developing an eating disorder.

What is the most common eating disorder in the world? ›

Eva Schoen, PhD, assistant professor of psychiatry and clinical director of eating disorders services at University of Iowa Hospitals & Clinics, says binge eating disorder, or BED, is the most common eating disorder, even though it's not talked about as much as other eating disorders, such as anorexia or bulimia.

What are the names of the eating disorders? ›

Symptoms vary, depending on the type of eating disorder. Anorexia nervosa, bulimia nervosa and binge-eating disorder are the most common eating disorders. Other eating disorders include rumination disorder and avoidant/restrictive food intake disorder.

What are four signs that someone might have an eating disorder? ›

For many individuals with eating disorders, here are some of the more commonly experienced signs and behaviors:
  • Adopting Ritualistic Eating Habits and Rules. ...
  • Refusing to Eat With Others. ...
  • Struggling to Engage with Food in Healthful Ways. ...
  • Exercising Excessively to Burn Calories. ...
  • Obsessing Over Physical Characteristics.
Apr 22, 2021

What's the most serious eating disorder? ›

Anorexia Nervosa

Experts consider anorexia nervosa to be the most deadly of all mental illnesses because it has the highest mortality rate. For this reason, we can consider it to be the most severe of the 12 types of eating disorders.

What organ is affected by anorexia? ›

If a person with anorexia becomes severely malnourished, every organ in the body can be damaged, including the brain, heart and kidneys. This damage may not be fully reversible, even when the anorexia is under control.

What happens in the brain when you have an eating disorder? ›

Parts of the brain undergo structural changes and abnormal activity during anorexic states. Reduced heart rate, which could deprive the brain of oxygen. Nerve-related conditions including seizures, disordered thinking, and numbness or odd nerve sensations in the hands or feet.

What are 3 things that can cause eating disorders? ›

Most specialists believe that eating disorders develop because of a combination of psychological, environmental and genetic factors. Psychological factors could be: Being vulnerable to depression and anxiety. Finding stress hard to manage.

What is the root of all eating disorders? ›

Interpersonal Factors

Smaller roots that make up this larger root may include certain family functioning styles, social or romantic concerns, identity concerns (e.g., LGBTQ individuals), having been teased, bullied, or abused, traumatic life events, and/or major life changes, such as moving or the death of a loved one.

Which eating disorder can be fatal? ›

EDs, particularly anorexia nervosa, are life-threatening diseases with a high risk of death due to cardiovascular disturbances, which can also be present during refeeding.

Which eating disorder is most common in females? ›

Anorexia nervosa, bulimia nervosa and binge eating disorder are the three most common eating disorders among women, although a number of other eating disorders are classified under the umbrella of OSFED, or “other specified feeding or eating disorder.”

What are 7 signs of anorexia nervosa? ›

Here are 9 common signs and symptoms of anorexia.
  • Purging for Weight Control. Share on Pinterest. ...
  • Obsession With Food, Calories and Dieting. ...
  • Changes in Mood and Emotional State. ...
  • Distorted Body Image. ...
  • Excessive Exercise. ...
  • Denial of Hunger and Refusal to Eat. ...
  • Engaging in Food Rituals. ...
  • Alcohol or Drug Abuse.
Dec 4, 2019

What are 2 biological causes of anorexia? ›

Genetic causes of anorexia

Genetic risk factors of anorexia include: having a family member with an eating disorder. having a family member with a mental health condition. living with type 1 diabetes.

What age is most likely to have an eating disorder? ›

The most common age of onset is between 12-25. Although much more common in females, 10 percent of cases detected are in males.

What are 2 warning signs that someone is suffering from bulimia? ›

Bulimia signs and symptoms may include:
  • Being preoccupied with your body shape and weight.
  • Living in fear of gaining weight.
  • Repeated episodes of eating abnormally large amounts of food in one sitting.
  • Feeling a loss of control during bingeing — like you can't stop eating or can't control what you eat.
May 10, 2018

What personality type is most likely to have an eating disorder explain? ›

Separately from other obsessive-compulsive traits, individuals with eating disorders show high levels of perfectionism, especially a type known as self-oriented perfectionism, in which a person has unreasonably high standards for themselves but not others.

What are 3 warning signs that might indicate that someone suffers from anorexia nervosa? ›

Warning Signs of Anorexia

Constant worry about dieting, food, calories, and weight. You complain a lot about being “fat” You refuse to eat whole groups of food, like carbohydrates. You pretend you're not hungry when really you are.

What are the last stages of anorexia? ›

The Signs of Late-Stage Anorexia
  • Blotchy or yellow skin.
  • Dry skin.
  • Dry mouth.
  • Extreme sensitivity to cold.
  • Osteoporosis (thinning of the bones)
  • Notable loss of muscle and fat.
  • Lowered sex drive.
  • Hair loss.
Dec 7, 2022

What eating disorder has the highest death rate? ›

Background. Anorexia nervosa (AN) is a common eating disorder with the highest mortality rate of all psychiatric diseases. However, few studies have examined inpatient characteristics and treatment for AN.

What is the most severe case of anorexia? ›

End-stage anorexia nervosa is anorexia nervosa in its most dangerous and severe form. Those experiencing end-stage anorexia present as severely underweight with a BMI of less than 15, are suffering the physical and psychological effects of severe starvation, and require immediate life-saving medical interventions [2].

What are 5 physical signs of anorexia nervosa? ›

Warning Signs and Symptoms

Feeling “fat” despite weight loss. Denial of hunger, lack of appetite. Refusal to eat in public and avoidance of situations involving food. Excessive exercise in an attempt to burn calories.

What does anorexia do to the female body? ›

With anorexia, your body doesn't get the energy that it needs from food, so it slows down and stops working normally. Over time, anorexia can affect your body in the following ways: Heart problems, including low blood pressure, a slower heart rate, irregular heartbeat, heart attack, and sudden death from heart problems.

Does your body shut down when you have anorexia? ›

In very late stages of severe anorexia, the body's organs simply stop working. The first major indications of organ failure are often high blood levels of liver enzymes. To reverse this requires an immediate intake of calories.

What happens to your bones when you have an eating disorder? ›

Loss of bone density makes bones less compact and more likely to break. When doctors use a bone mineral density scan, they will see that the bones of anorexic patients may be misshapen, loose material instead of circular, tight, dense material. In fact, bone fractures are extremely common in those with anorexia.

What are the signs of malnourished brain? ›

Emotional and Cognitive changes: Depression, anxiety, irritability, increased mood fluctuations, intense and negative emotional reactions, decreased enthusiasm, reduced motivation, impaired concentration, problem solving and comprehension, increased rigidity, obsessional thinking and reduced alertness.

Can you get a stroke from eating disorder? ›

So, people with irregular electrolyte levels, like those with anorexia or other eating disorders, are at an increased risk of experiencing a heart attack or stroke. While it is possible for people with anorexia to experience a stroke, some other eating disorders are more closely associated with strokes.

What disorder causes you not to eat? ›

Anorexia nervosa

People with anorexia generally view themselves as overweight, even if they're dangerously underweight. They tend to constantly monitor their weight, avoid eating certain types of foods, and severely restrict their calorie intake. Common symptoms of anorexia nervosa include (1):

What is known as the secret eating disorder? ›

As the name suggests, secret eating is a disordered eating behaviour that involves eating at times, in locations or in ways where you won't be seen, with the intention of hiding what or how much you're eating from other people.

What disorder is often comorbid with eating disorders? ›

The most common psychiatric disorders which co-occur with eating disorders include mood disorders (e.g., major depressive disorder), anxiety disorders (e.g., obsessive compulsive disorder, social anxiety disorder), post-traumatic stress disorder (PTSD) and trauma, substance use disorders, personality disorders (e.g. ...

What is the death rate due to eating disorders? ›

Eating disorders are among the deadliest mental illnesses, second only to opioid overdose. 10,200 deaths each year are the direct result of an eating disorder—that's one death every 52 minutes.

What is it called when you eat a lot then throw it up? ›

The main signs of bulimia are eating a large amount of food over a very short time (binge eating) and then ridding your body of the extra food (purging) by making yourself vomit, taking laxatives or exercising excessively, or a combination of these.

What is the most common eating disorder in America? ›

Binge Eating Disorder: The Most Common Eating Disorder in America.

What is Diabulimia? ›

What is diabulimia? Type 1 diabetes with disordered eating (T1DE) or diabulimia is an eating disorder that only affects people with type 1 diabetes. It's when someone reduces or stops taking their insulin to lose weight.

What are two red flags for anorexia? ›

What to look for – Anorexia Nervosa Red Flags:
  • Skipping meals.
  • Making excuses for not eating.
  • Eating only a few certain “safe” foods, usually those low in fat and calories.
  • Adopting rigid meal or eating rituals, such as cutting food into tiny pieces or spitting food out after chewing.
Jun 5, 2014

How do doctors know if your anorexic? ›

Although there are no laboratory tests to specifically diagnose anorexia, a healthcare provider may use various diagnostic tests, such as blood tests, to rule out any medical conditions that could cause weight loss and to evaluate the physical damage weight loss and starvation may have caused.

What do doctors look for when diagnosing anorexia? ›

Because family physicians serve as primary care providers for a large percentage of adolescents, they have an important role in diagnosing these disorders. The hallmark of anorexia is a refusal to maintain body weight at or above 85 percent of expected weight, as defined by age-appropriate body mass index charts.

What is the most common reason for a diagnosis of anorexia? ›

Anorexia often stems from a distorted body image, which may result from emotional trauma, depression, or anxiety. Some people may view extreme dieting or weight loss as a way to regain control in their lives. There are many different emotional, behavioral, and physical symptoms that can signal anorexia.

What are three characteristics of a person who has anorexia? ›

According to the DSM, anorexics 1) refuse to maintain body weight at or above a minimally normal weight for their age and height, 2) experience intense fear of gaining weight or becoming fat, even though they are underweight, 3) misunderstand the seriousness of their weight loss, provide undue influence of body weight ...

What hormone is responsible for anorexia? ›

Anorexia nervosa is a state of acquired growth hormone (GH) resistance, characterized by increased GH secretion and decreased systemic insulin-like growth factor 1 (IGF1) levels.

What are the long term effects of not eating enough? ›

If you're not getting enough calories, chances are you're not getting enough vitamins and minerals either. Nutritional deficiencies may cause a long list of health complications including, but not limited to, anemia, infertility, bone loss, poor dental health and decreased thyroid function.

Can you be hospitalized for not eating? ›

Hospitalization for eating disorders

Hospitalization may be necessary if you have serious physical or mental health problems or if you have anorexia and are unable to eat or gain weight. Severe or life-threatening physical health problems that occur with anorexia can be a medical emergency.

What is body avoidance? ›

What is Body Avoidance? Body avoidance is the opposite of body checking. Instead of constantly evaluating your body size or shape, you completely avoid seeing your weight or shape. It is not that thoughts of weight and appearance aren't present, however; it is just a different way of coping with these intense feelings.

What are some common examples of disordered eating behaviors and thoughts? ›

Symptoms of Disordered Eating

Rigid rituals and routines surrounding food and exercise. Feelings of guilt and shame associated with eating. Preoccupation with food, weight and body image that negatively impacts quality of life. A feeling of loss of control around food, including compulsive eating habits.

What are common forms of disordered eating? ›

Disordered eating may include restrictive eating, compulsive eating, or irregular or inflexible eating patterns. Dieting is one of the most common forms of disordered eating. Australian adolescents engaging in dieting are five times more likely to develop an eating disorder than those who do not diet (1).

Which of the following is considered a disordered eating behavior? ›

Types of eating disorders include anorexia nervosa, bulimia nervosa, binge eating disorder, avoidant restrictive food intake disorder, other specified feeding and eating disorder, pica and rumination disorder.

What are disordered behaviors? ›

Behavioral disorders involve a pattern of disruptive behaviors in children that last for at least 6 months and cause problems in school, at home and in social situations. Nearly everyone shows some of these behaviors at times, but behavior disorders are more serious.

What are two common behaviors of a person with anorexia nervosa? ›

Behavioral symptoms of anorexia may include attempts to lose weight by:
  • Severely restricting food intake through dieting or fasting.
  • Exercising excessively.
  • Bingeing and self-induced vomiting to get rid of food, which may include the use of laxatives, enemas, diet aids or herbal products.
Feb 20, 2018

Which personality trait is most commonly associated with eating disorders? ›

Personality traits commonly associated with eating disorder (ED) are high perfectionism, impulsivity, harm avoidance, reward dependence, sensation seeking, neuroticism, and obsessive-compulsiveness in combination with low self-directedness, assertiveness, and cooperativeness [8-11].

What kind of eating behavior is characteristic of anorexia nervosa? ›

Anorexia nervosa is an eating disorder that causes a severe and strong fear of gaining weight. You may have an altered view of being fat even when you are dangerously thin. You may use extreme exercise, calorie and food limitations, or binging and purging to control your weight.


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