Severe Cases Only: Apply Within

Let’s not be quiet about this. It’s been swept under the rug for long enough. It’s time to make some noise.

In the coming  months, massive changes will be made in regards to health provisions in Australia. Already there are concerns raised that mental health will not receive adequate funding to make changes so desperately needed to the system. Just last weekend, Get Up! organised a campaign to bombard NSW Premier Kristina Keneally’s office with faxes – a reminder to not let her forget about mental health in this week’s Health Reform discussions. (Get Up!, 2010)

Eating disorders are a massive social issue – and not one which can continue to be ignored. Last year it was reported that five year olds are being admitted to hospital with severe complications of anorexia induced malnutritionand, increasing number of males are developing the condition (news.com, 2009). This is no longer a “teenage girl” illness, nor is it “a lifestyle choice” or “silly little girls seeking attention”. This is a serious disease, which impacts not only one’s physical and mental health, but also their communities; families, friends, teachers, parishioners and employers. According to the Eating Disorders Foundation of Victoria, 1 in 4 people know someone with an eating disorder. (Eating Disorders Foundation of Victoria, 2010).

Fact. Eating disorders have the highest mortality rate of any mental illness. For Anorexia Nervosa it’s 20 per cent. Eating disorders have a suicide rate 32 times higher than the national average. Eating disorders can have long term and devastating health impacts. These are potentially fatal (Eating Disorders Foundation Victoria, 2010). Everyone knows the statistics. They’ve been spoken of often. Yet people hear “eating disorder” and automatically assume that the only ill people – medically or psychologically – are the emaciated shadows of people; usually teenage girls. How very wrong this judgement is for professionals, parents and even patients themselves to have.

A study recently conducted by the Department of Paediatrics at Standford University School of Medicine outlined what those of us with the illness have known for years. Those with an Eating Disorder Not Otherwise Specified (EDNOS); are potentially the “sickest of the sick” – likely to suffer serious medical complications and even be sicker than those with bulimia nervosa
EDNOS is the largest diagnostic cluster of eating disorders; it encompasses everything from someone who binges and purges once a week to a female with behaviours of Anorexia Nervosa who has not yet reached the criteria of amenorrhea (loss of menstruation) for three consecutive months to any other dangerous eating pattern in between.

One out of every 20 Australian women admits to having an eating disorder. Statistics for males suffering the illness are difficult to obtain. According to the ABS, there are 6.98 million people in NSW. Approximately 50 per cent are female. (ABS, 2009) So, given the statistics provided above, this means that approximately 5 per cent of 3.5 million people admit to having an eating disorder. Only 19 per cent of those with anorexia nervosa go willingly to treatment (Eating Disorders Foundation Victoria, 2010) and, with secrecy a huge part of the illness, and the above statistics only representing those who acknowledge their disorder, it’s anyone’s best guess as to how many sufferers there actually are. It is advertised that there are four state-wide publicly funded beds in NSW to treat the illness (CEDD, 2010). In reality it’s far fewer than this – other mental health patients from the Sydney South West Area Health Service take precedence over eating disorder patients and rarely are there enough beds to maintain the program at full capacity.

Patients with the illness are difficult. According to many professionals I’ve spoken to; including staff who work with eating disorders patients directly – eating disorders are the most complicated of all the psychiatric illnesses to treat. They are often the most difficult and manipulative patients. The secretive nature of the disease means that, not only will sufferers to go extreme lengths to hide and deny their illness, but they will also feel as if they do not need or deserve treatment and that their illness does not warrant medical attention. Extremely intelligent people can completely deny that they are ill – even if blood test results, bone density scans, urinalysis and professionals deem it otherwise. This does not mean that these patients do not deserve or need treatment. Rather, this means that they have an illness which prevents them from seeing the severity of their condition during times of illness and should be treated as such – respectfully, compassionately and firmly.

The burden on nursing staff looking after patients with eating disorders is high and no allowances are made to accommodate for the nursing staff rostered on to look after eating disorders patients. I know from personal experience that eating disorder patients are difficult. We are often manipulative, requiring intensive supervision and support. To comprehensively care for an eating disorder patient and six other patients simultaneously is not realistic nor is it fair on the nurse or the patient needing that high level of care and the other patients needing the less intensive support. According to the Centre for Eating and Dieting Disorders, the beds at Royal Prince Alfred Hospital; the only public hospital which admits sufferers from anywhere in NSW, “are usually reserved for severe cases of anorexia and bulimia.”

The fault here does not lie within the staff members themselves – who do an incredible job with very limited resources. It lies in the grossly inadequate funding for psychiatric services nationally, specifically with the funding of eating disorders– lacking not only in NSW, but Australia wide.

There are many horror stories – patients going to the emergency department, being turned away because they “don’t look sick”, only to arrive in an ambulance several hours later with some complication that could have been avoided if they had been admitted for observation in the first place. A dear friend of mine was once turned away from a hospital admission despite having a BMI of 15.1, a sitting heart rate of 160 bpm and a postural drop which caused her to collapse every time she stood up. She was not admitted because her BMI was above the program’s cut off of 14.9 and as such wasn’t deemed medically unstable. This girl was sent to a different state for immediate medical and psychiatric treatment, her family unable to afford to visit her for Christmas. This girl was not from a rural or regional area. She was from a capital city. This is not an isolated incidence. It happens with terrifying regularity.

What is even more concerning is the reaction when sufferers approach allied health care professionals or medical practitioners with concerns that they may be developing an eating disorder. So often it is treated in a blasé manner, sometimes a chortle or an outright response “don’t be ridiculous, you’re hardly thin enough to have a problem.” I’ve had many women write to me and tell me their regrets of not seeking help from an eating disorder friendly practitioner sooner. With regret in their words, they tell me of psychiatrists telling them “you haven’t got a problem if you haven’t got marks on your knuckles from sticking your fingers down your throat” and of emergency departments telling sufferers to contact mental health if they’re so dehydrated they’re not able to hold their heads up or walk in a straight line, but not to bother Emergency again, thank you very much.

It is in these early stages that sufferers are most reachable. It is in these early stages that we can work with people to slow, or even prevent the full onslaught of the most deadly of all the mental illnesses. It is in these early stages, before malnutrition has set in and before the eating disorder delusions and voice have set in, that people are able to work most effectively with treatment teams. It’s here, if the health system worked with people rather than against them, that people have a chance to avoid costly emergency department, outpatient, longer-term medical, longer-term psychiatric and revolving door psychiatric admissions.

It’s here that there is a chance to prevent people needing regular GP appointments, costly pathology tests, assessments with acute care mental health teams, Medicare-rebated psychiatric services and PBS medication, let alone lengthy hospitalisations if someone becomes acutely ill. It’s at this stage people don’t need to be ‘re-fed’ before they are able to benefit from working with a psychologist or counsellor on the internal issues which have really caused the illness. After all, an eating disorder isn’t about food at all. It’s about feelings.

Professor Patrick McGorry, Australian of the Year and adolescent mental health specialist, promotes early intervention for mental health conditions (Get Up, 2010). The Brain and Mind Research Institute CEO Ian Hickie take the same stand. It seems ludicrous to refuse to admit someone until they are experiencing a “severe case of anorexia and bulimia” (as quoted by the Centre for Eating and Dieting Disorders of NSW themselves). As favourable as the early intention model is, the reality is the public healthcare system is so underfunded and overstretched that there aren’t enough beds for the acutely ill – let alone those people - deserving as they are - needing early intervention. There is not enough room in eating disorder day-programs; the waiting lists are too long or the criteria too strict to be available to those not critically ill or, in some cases, those who are too ill. The model of early intervention is merely ideological unless something in the health system changes immediately.

An eating disorder is a mental illness. Although it can have severe physical complications, it is actually not a physical disease. There is little research into what types of treatment work most effectively with sufferers and we haven’t got a pill to manage the symptoms of the illness specifically. Sufferers often have a warped perception of themselves and how much space they take up. They engage in disturbing and distressing eating and behavioural patterns which may consist of refusing to eat, eating limited amounts, eating large amounts, frequent vomiting, laxative abuse and more. Recovery from an eating disorder takes, on average, seven years. (Eating Disorders Foundation of Victoria, 2010)

The reality is having an eating disorder is complete psychological torture. It’s endless chattering in one’s head. Negative thoughts. Crazy thoughts. Thoughts you don’t want, but have no power to remove. Eating disorders are extremely uncreative – they say to me what they will say to a 48 year old bulimic in Wales, or a 12 year old anorexic in New York. Books about eating disorders and online forums reveal the same train of thought – when the only common denominator is that the illness is present. What was once merely a chain of thought takes on its own life. It becomes controlling and pervasive. It is walking, talking misery. It’s a disease where a sufferer can rarely ask for help and will do everything to defy what they are asked to do in a desperate attempt to keep control of their illness which is, ironically enough, completely out of control by this time. Yet, for me at least, during the process of recovery, recognising the magnitude of control that my illness had is overwhelming. The respect and thankfulness I feel to the people who helped me when I did everything in my power to prevent them it is immense.

With a model of early intervention, it makes sense for the State Government, the Federal Government and the Health System to wake up and see what’s really in front of them; desperate people, services campaigning for early intervention and nowhere to put people once they’ve been intervened and a system that insists that people get sicker before they are allowed to get better.

There needs to be a complete overhaul of eating disorder services in Australia so that rather than being containment and stabilisation wards, inpatient treatment is a place of true healing, outpatient treatment facilities are able to treat people without them requiring costly hospital admissions and practitioners are trained in early-intervention nationally to detect, treat and intervene in the development of eating disorders.

Recovery, although a journey, is possible for anyone –with the right support and treatment- and just like supporters of sufferers and those of us who have made it through the other side; we aren’t going to give up. The health system shouldn’t either.

If you want help or information on eating disorders, please call The Butterfly Foundation Helpline on: (02) 9412 4499 or The Eating Disorders Foundation of Victoria on: 1300 550 236.