On the fifth floor of an enormous modern hospital complex, one is greeted by the typical austere environment one traditionally associates with a hospital. The floor and walls are a stark, clinical white intensified further by the fluorescent lights. The entrance leads out directly onto a long hallway with rooms on opposite sides. However, if one deems to follow the stark, white hallway one finds a surprisingly cosy media room, equipped with lounges, bean bags, TV, games and books. A kitchen and dinning area decked out with childlike place-mats and puzzles and a small but lovely outdoor garden with a bbq. I remember on my first visit finding these small homely features oddly uplifting. It presented a pleasant change from the grim, bleak hospital environments I had become so accustomed to over the past 6 months.
The people here are both exceedingly lucky and exceedingly unlucky. They are the only six patients in all of NSW that are deemed ill enough to require specialised in-hospital care. The ward officially has 9 beds but 3 of these remain empty, vacant rooms the product of a lack of funding I am told by one of the nursing staff. An example of government promises which have not come to fruition, an idea conceived but not executed. This is the eating disorders clinic at the Royal Prince Alfred Hospital in Sydney. The only state funded specialised clinic of its kind in NSW.
This has also been my sister’s home for the last 3 months. The journey to get her here has been arduous to say the least. It took admission to 3 separate hospitals, 6 months, 2 biopsies, several near death scares and over $45,000 in medical bills before she was finally granted admission to the RPA.
Roughly 6 months ago my sister Olivia and I went to New Zealand for 10 days, it was a brief trip, a quick fun getaway before I had to go back to uni. What I remember most about that holiday and what I suspect I always will, was not out trip to Milford Sound or our heart racing jet boat ride, or hanging out in the cool sounding but thoroughly impractical ice bar, it was the fact that for 10 days I never saw her eat a single thing. Anorexia is certainly a horrifying debilitating illness for the sufferer, its not an easy thing to watch either. Upon our return, Olivia sought help for what she now recognised was an illness. She saw two separate GP’s and when she asked them about the treatment options for someone with anorexia they replied quite unabashedly that they did not know. After a time she was able to make an appointment with a psychiatrist who advised my mother that my sister was delirious and needed to be taken to the emergency room immediately.
Olivia in New Zealand
14 hours later she was admitted to the hospital but not until we were told repeatedly by several doctors and nurses that Wollongong hospital offered no specialised services for anorexia. A point that was made abundantly clear to us in our time there. One of the dieticians who worked in consultation with my sister informed my family that hospital staff receive virtually no training concerning eating disorders and the hospital itself received zero funding in that regard. After Olivia could not be persuaded to ingest even the smallest portion of food a nasal gastric tube was inserted through her nose and into her stomach.
The doctors informed the family that Olivia was in a state of such advanced starvation that providing her with too much nutrients too quickly could literally kill her. As such a brownish milkshake like substance was slowly and incrementally fed through her nose, an experience she found mortifying. Food was gradually reintroduced to her diet and she managed to gain enough weight that the doctors deemed her well enough to release her, under the condition that they would immediately arrange for outside psychological and dietary care at Wollongong Eating Disorders Clinic. However upon or initial visit to the clinic the one psychologist and one dietician who worked there informed us that whilst we were deemed high priority it would be a month minimum before they would be able to see her. Unsurprisingly, a week later she was back in hospital.
Olivia after her initial release form Wollongong hospital.
Another 10 hours in emergency later she was back in the ward. This time the doctors had the presence of mind to appear contrite that they had failed to deliver on their promises. Their solution? Once they had stabilised her weight they would admit her to the psych ward. This did not fill me with the sense of reassurance in which it was intended. Indeed the idea that my sister was to be admitted to a psych ward in a hospital were neither doctors, nurses, psychiatrists or dieticians, specialised, treated or appeared to have even a rudimentary understanding of anorexia was distressing to say the least.
They too, had no knowledge of the tertiary inpatient services which treated anorexia even though the only publicly funded specialised eating disorder clinic in NSW was a mere hour away, they had no knowledge of its existence yet alone the referral process for admission. Instead we were very much left to our own devices. Fearing the inevitable horror of what an admission to a general psych ward would be I endeavoured to exhaust every possible alternative. Numerous phone calls, enquiries and unanswered emails later, I was finally able to secure Olivia a bed in Northside clinic, a private hospital which offered a specialised unit for anorexia sufferers. However this lifeline came with a substantial price tag of $1100 a day. When I asked my parents if they could afford this my mother replied “not really but its either that or pay for a funeral.”
6 weeks and $45 000 later Northside deemed her well enough to be released under the provision that she participate in the clinic's day program several days a week. However lacking both the incentive and desire to take the 2 hour train drive up to Sydney this never happened.
Unable to sustain her weight gain at home and my family unable to afford her the constant supervision she required, she was back at the clinic after several weeks. This time despite being in hospital her condition continued to deteriorate. After complaining of chest pain one night the doctors called my mother, wishing to spare her the substantial cost of calling an ambulance they asked her to escort her to yet another emergency room. ‘don’t worry there expecting you…. They know exactly what to do” she was assured.
However upon arrival to the emergency room in a custom that had become maddeningly familiar my sister was asked why she was there. “We don’t treat anorexia. What exactly is wrong with you?"
Olivia was in Royal Northshore for 10 days. In that time she lost 5 kilos, “no one watched me eat” she told us upon her release. She now has no memory of her time there and that’s no wonder at 32 kilos her BMI was at 12, 16 is the bench mark for hospitalisation. The results of a liver biopsy told us she was in the early stages of liver failure, her liver starved of nutrients had literally begun to eat itself.
Back at Northside her condition improved marginally but the doctors were still extremely concerned. As a mental hospital they could not afford her the round-the-clock medical care that her condition required but nor were they comfortable enough to send her to a hospital which did not understand or know how to treat anorexia. Thus they made arrangements to transfer her to the RPA Hospital.
This experience has ultimately highlighted the dire lack of services available for the treatment of eating disorders. Private hospitals are few and the cost of admission is astronomical. Furthermore the lack of funding that public hospitals receive means that they will only ever take the very sickest of sufferers. Therefore, it is quite common for people to be on the waiting list for the RPA and other tertiary facilities for over 6 months.
It is also common for sufferers to require numerous visits to private hospitals and tertiary facilities before they are able to maintain their recovery. This is in part due to the issue that once released many do not receive any follow up care. Although some facilities do run day programs these are only appropriate for those who live locally. There are no specialised eating disorder services in regional areas anywhere in Australia. A representative from the Butterfly Foundation told me in an email that, “maintaining recovery from an eating disorder can be challenging. Eating disorders are complex brain based disorder and the recovery process can be complicated. Access to treatment in regional areas can be difficult, unfortunately many people are forced to move inner or out of state to seek treatment.”
In lieu of any specialised treatment services many suffers of anorexia are placed in general psychiatric wards where they do not receive access to adequate treatment. Indeed, this is the only treatment option available for sufferers in the Northern Territory, Western Australia and Tasmania.
It has become painfully apparent that there is a severe lack of knowledge and understanding among health care professionals concerning the treatment and diagnosis of eating disorders. Indeed, what is perhaps even more concerning than the lack of services themselves is that, for the most part, health care professionals remain completely ignorant of their existence and are thus unable to provide proper treatment pathways.
Early intervention for people with an eating disorder is paramount, if health care professionals were both competent and confident in identifying an eating disorder in its early stage and then refer the patent to community based treatment this could greatly improve the likelihood of recovery and reduce the burden on specialised tertiary inpatient units.
