Story By Anonymous
It has been a difficult decision to speak out about this. It is difficult not because of the judgement that tends to attach itself when mental health is related but because of the repercussions in my own treatment.
I am a 17-year-old girl with anorexia nervosa. An illness that kills 1 in 5 sufferers. I have been in the system since I was 14. Over the last 3 years, I have received life-saving inpatient treatment numerous times. I have also borne witness to the steady decline of services for children with an eating disorder over these 3 years.
As a person still receiving treatment, I would be naive to think that there is no possibility for repercussions when speaking out; however, when an illness has come so close to killing both myself and those that I love, every single voice counts.
Whilst there are so many areas of improvements desperately needed for eating disorder treatment in Western Australia (WA), the newly created gap in the age group of 16-18 is especially alarming.
What is even more alarming is the nature of eating disorders within this age group. Just looking at some simple statistics it is made apparent that there is a huge need for treatment for children aged 16-18. The facts are that:
- Young people, aged 14-25 are at the most risk of developing an eating disorder.
- It is known that recovery from an eating disorder is likely to be a long process (years).
- From 2015-16, females aged 15-24 made up 57% of Australian hospitalisations with a primary diagnosis of an eating disorder (Lawrence et al. 2015).
- From 2015-16, females aged 15-24 made up 58% of community mental health care contacts provided. Making up the largest percentage for age group, in comparison to 14% for females aged under 15 (Lawrence et al. 2015).
- 1/5 cases of anorexia nervosa are fatal, making this the highest death rate of all psychiatric illnesses.
* these statistics do not represent the diversity of eating disorders within our society; unfortunately, these statistics are hard to come by
Although more recent statistics are absent from current knowledge, it is a known fact that eating disorders are on the rise; so, these statistics would be presumingly higher now than when recorded.
In WA, there are little services available for children (under 18’s) with an eating disorder. Up until this year, Princess Margaret Hospital (PMH) was the primary public treatment for children with eating disorders within WA.
PMH, ran a specialised eating disorder program which contained both inpatient and outpatient treatment. Far from perfect due to the lack of funding, the service still provided inpatient treatment for those up to 18-years-old. The start of the services’ decline was first visible in the change of the nature of inpatient treatment.
Inpatient admissions for nutritional rehabilitation are both complex and lengthy, lasting for numerous weeks or even months. It is not uncommon for a patient to have more than one inpatient admission.
The inpatient treatment prior to 2017 included continued school education, 7-day meal support and different therapy groups throughout the week. However, 2017 saw a shift with the removal of weekly meal support. Only having support during the week, leaving children unsupported throughout the weekends. Due to this, many patients resorted to drinking nutritional drinks without even attempting physical food or even worse, not eating at all. Eating disorders are mental illnesses, and without any distractions or encouragement during meal times disordered thoughts can easily influence a sufferer.
Since then there has been less and less treatment available. With, people left at a loss at what to do – including the staff. Left out to dry with the lack of resources and funding provided to them, many staff have presumably left for ‘greener pastures’. Only one Doctor is dedicated to the inpatient and outpatient program, which treats majority of the children in WA with an eating disorder.
The greatest decline in treatment was for 16-18-year-old patients. This age group has been a matter of contention within the eating disorder system for some time.
Up until recently, patients who were needing hospital admissions for lifesaving nutritional rehabilitation or mental health crisis admissions were needed to be granted executive approval. Approval was granted more often than not and as a patient that was inpatient for the majority of 2016, I can confirm that it was normal to see 16-18-years-old eating disorder patients receive treatment within PMH.
However, in the recent move from PMH to Perth Children’s Hospital (PCH) inpatient treatment has been removed for this older age group.
Now, no one with an eating disorder aged 16-18 is to be granted inpatient treatment within PCH. Outpatient treatment, an already dwindling service, is still available. However, inpatient treatment is no longer; leaving a huge question mark on where this age group stands in WA’s system.
There are many issues lying with this decision. Starting with the fact that those aged 16-18 are still legally children; however, are only able to access adult inpatient treatment. These children who are not deemed legally mature enough to drink or to vote, are expected to be able to cope with spending some of their hardest times of their life, in a setting where they are easily made to feel young, vulnerable and out of place.
WA, at current, has no specialised eating disorder unit available in the public system. A patient may choose to fork out the money for private health insurance to be able to receive treatment in Hollywood Hospital’s Eating Disorder Program. However, private insurance is not applicable for many people’s lifestyles; leaving many children to receive treatment in their catchment area’s public hospital.
The public system sees eating disorder patients undergo either mental health treatment in mental health wards or medical stabilisation in medical wards. With no current system in place for the physical and mental aspects of the disorder to be worked on harmoniously and efficiently.
The catchment area system makes it a ‘postcode lottery’ when it comes to treatment, with some public hospitals known to have more efficient mental health treatment in comparison to others.
There is also little public eating disorder beds available within WA, with public hospitals having restrictions over the number of beds available in psychiatric wards that can be occupied by those with an eating disorder, whether that is the primary concern of their admission or not. Because of this, many people are made to wait lengthy periods for mental health treatment or are not able to undergo an admission when they need it.
Yes, if a person is in a crisis situation, a place within some part of the hospital is made available to them. However, in 2018, should it be acceptable to allow people to deteriorate further, waiting until they are on the verge of death to be able to be given opportunities to start getting their lives back?
WA has a minimal number of adult patients who can access inpatient treatment at current. Yet, we are throwing even more people into the mix with 16-18-year-olds being made to access adult inpatient treatment due to the new rules of PCH. It does not make sense.
Another primary concern of the changes inflicted is the fact that adult hospitals have limited educational services available in comparison to what is available for PCH’s inpatients. PCH has specialised teachers available Monday- Friday, with inpatients running on a near normal schooling schedule. In public hospitals, the 16-18-year olds who are most often still in secondary schooling receive minimal educational support in comparison to what is offered at PCH; which is understandable, considering adult hospitals are designed for adults and not school children.
It is highly questionable whether the decision to make 16-18-year-old eating disorder patients only able to access adult inpatient is indeed a good one. However, the main problem exists in the transition period given to make these changes occur. The transition period was barely existent and it seemed as if overnight 16-18-year-olds were no longer able to be inpatients at PCH. The havoc that occurred is still ongoing and many patients have been left with trauma that will most likely be there for years to come.
There are numerous cases where these young patients have been in limbo between hospitals. With one hospital refusing to take them because of the nature of their illness, and the other not able to take them because they already have adults in the allocated eating disorder beds.
I am aware of numerous cases for this new age group in the public hospitals and the treatment can only be described as inadequate and quite frankly – disgusting. Vulnerable young people have been made to feel out of place and an annoyance to the system. They have had uneducated comments thrown at them regularly, whilst they are quickly made to be stabilised and sent home without any real mental health help. Every admission seems to be guided by when the patient can be discharged, instead of how can this admission help the individual.
This steadily inflicted decision was made known quickly, but the reasons why are still unknown. Many think it to be because of the nature of eating disorder treatment and the response it gathers from those high up.
Treatment for a child with an eating disorder isn’t pretty. It is traumatic, lengthy, and difficult beyond measure to treat an illness that is hell-bent on destroying the sufferer. Eating disorder patients are often noncompliant, and security are regular visitors on the ward that treats these children. However, these patients are still people. They are still children. They are still sick children, with deadly illnesses they did not choose and they deserve treatment.
Something needs to be done and as Western Australians, we can not stand for this.