No bed for mother critically ill with anorexia – wrong postcode

No bed for mother critically ill with anorexia – wrong postcode

A New South Wales mother of four children, aged six to 13, is being denied a hospital bed for treatment of her chronic anorexia nervosa because she has the wrong postcode.

The woman’s plight, which has been taken up by her treating clinical psychologist, reveals a gaping hole in health care services for people with eating disorders in Australia. It shows that even when treatment is available, bureaucracy can prevent the patient getting it.

Clinical psychologist, Mr Chris Thornton, is concerned that his patient, who lives on Sydney’s North Shore and has been waiting for more than two months for a hospital bed, will die unless immediate action is taken. Since March, Mr Thornton has repeatedly written to Members of State Parliament, including the Minister for Health and Minister for Medical Research in NSW, Jillian Skinner, explaining that his patient requires urgent treatment, but to no avail.

“There are currently two beds for adults with eating disorders that are available to patients anywhere in the State of NSW,” Mr Thornton said. (NSW’s population exceeds 7 million.)

“I am unable to gain access for Andrea (not her real name) because the Royal Prince Alfred Hospital, which has the two state designated beds, has a two month waiting list, and the other option we have found in a specialist unit at Westmead Hospital is refused because Andrea has the wrong post code – she does not live in Westmead’s catchment area.”

Westmead, Mr Thornton said, requires a directive from the Minister of Health before it can accept Andrea as a patient. To date a request for this directive has been refused twice.

Andrea was informed by Minister Skinner’s office as late as yesterday that she needed to go through her local area health service for treatment, and that she could not expect to ‘just jump the queue and use somebody else’s health services’ to gain admittance at Westmead.  However, Mr Thornton said the “proper local channels” were not equipped to treat Andrea’s complex case of anorexia nervosa. Medical admission alone was not adequate.

“Andrea’s situation needs treatment within a specialised eating disorders unit within a medical hospital,” Mr Thornton said. “That unit needs to be staffed by specialist staff who have experience in managing the complex physical and psychological needs of a patient with anorexia.”

Andrea’s fight for survival from anorexia is hard enough without having to also fight for a bed. Her struggle graphically illustrates the need for the Australia’s first conference on eating disorders for families, carers and suffers, to take place in Brisbane, May 23-25, 2013. Titled, At Home with Eating Disorders, the conference will bring much-needed focus on the seriousness of eating disorders and the need for greater access to care.

But Andrea can’t wait that long. She needs help. Now.

The Patient’s Plea: 

A letter to Minister Skinner, April 18, 2012

I am writing this letter as I am in a desperate situation. Already correspondence has been sent to you in regards to my case from my treatment team (clinical psychologist and GP). My name is Andrea. I am a 39 year old mother of four children, aged from six to 13. I am married to my husband, for now 16 years. I feel extremely privileged to be blessed with such a beautiful and supportive family.

I have been suffering from Anorexia Nervosa for 29 years, since the age of 10. I did not choose to have this illness; it chose me. As a result I have been left with the 29-year battle.

Currently I am in the midst of relapse, but this time there is no help to be found, anyway we turn. I have received treatment in the past that has saved my life, but as the years move on, these services are whittled away bit by bit, falling victim to the economy, fund allocation and election promises. The problem is that these statistics represent real people, like myself and my family. What is so upsetting at the moment is that there is treatment available, albeit limited, but I have been refused access to it, based on bureaucracy, not on a need basis, not on a human basis.

I am dying at home, with my family watching, with a husband who would do anything to get me well. He has even investigated a treatment at home option, himself staying at home and providing nasogastric feeding, in which he has absolutely no idea about, but is willing to do whatever is necessary to avoid having to raise our four children, by himself a widower. But, this is not possible either. The private health system does not provide any facility that offer nasogastirc feeding; it’s a simple math equation, they can gain more financially with shorter term, less complicated patients. They can pick and choose who they treat, and I do not fit into their financially viable criteria. It is difficult to realise I am a number with a dollar value attached. My husband and children place little value on these allocations.

My only two options that can provide me with the treatment I need, nasogastric

feeding are the two beds that exist at RPA for the whole of NSW, and the three beds at Westmead, which I have been refused because I do not live in the Westmead catchment area. The waiting list for RPA is extraordinarily long, and the patients on this list are all critical. I fail to understand why the four beds that were available last year, were reduced to 2 beds this year, especially with the supposed injection of funds into mental health? Not to mention the increasing rate of eating disorders. Confusing?

I am not wanting special treatment, I’m asking to be allowed to watch my four beautiful children grow up, to live out my life with my wonderful husband and give what I can to others. It is so hard to fathom how I can live in a first world country, but not have access to treatment that would prevent my death. It makes me frightened for my children too. If I had any other condition or disease, I know I wouldn’t be writing this letter. If I had cancer, treatment would be immediate, with many treatment option available, and I doubt anyone would care what my postcode was if the treatment I needed was not in my catchment. Let a Mum of four die, when she could be treated. I think not! But in reality, this illness is no different. If untreated it kills, and the result remains same. There will be a husband with no wife, and children with no mother.

I am not one to write letters of this nature, but I am asking for you to consider my case as a human, a mother, a wife, a friend, a part of the community, not a number, a dollar sign, a postcode or an exception, just a life hanging in the balance.

The Practitioner’s Plea

Mr Thornton describes his patient and her illness in letters to MPs, since March:

My patient, Andrea, has suffered from Anorexia Nervosa for more than 25 years. She has been a patient of mine for 10 years. She is now in the most severe state of starvation that I have seen her in. She is eating less than xxx calories a day. This is, at this stage of her illness, not from choice but as a result of a brain based psychiatric illness exacerbated by severe starvation. Andrea will not respond to psychological therapy or to a hospitalisation in the private system where patients are largely required to be motivated to change and be able to eat food. Andrea is unable to do this currently due to her starved brain. The only treatment option for her is to be admitted to a medical/psychiatric unit with a specialist Eating Disorders Unit. Only these units are able to offer Andrea the type of treatment she currently needs, which is nasogastric tube feeding. This needs to be provided by a unit with expertise in this treatment’s possible complications, including refeeding syndrome, from which patients can die.

The denial or restriction of access to the appropriate treatment that is necessary to avert the risk of death to my patient is unacceptable.

It is worth noting that anorexia has the highest mortality rate of ANY psychiatric illness, with 20 per cent of patients dying from the illness after a prolonged history. Up to 10 per cent of patients with anorexia will die as a direct result of their disorder. The weighted mortality rate (i.e. deaths per 1000 person years) is 5.1 for anorexia. This means, for example, that those with a diagnosis of anorexia have a death rate five times higher than the general population matched for age.

The Standardised Mortality Ratio (the ratio of observed to expected deaths) in anorexia has been shown to be as high as 12.814. Studies in other psychiatric disorders have found SMR of around 2.5 in schizophrenia, 2.1 in bipolar disorder and 1.6 in major depression. This SMR data highlights the importance of access to medical and psychiatric treatment for all patients regardless of Post Code.

As the immediate past president of the Australia and New Zealand Academy of Eating Disorders and a clinician who has worked in the sector for over 20 years, I understand that two “statewide” beds are available at Royal Prince Alfred Hospital. Understandably, given the scarcity of adult beds in NSW (and Australia) for the treatment of anorexia, the waiting list for these beds is long. I have however arranged for my patient to be on the waiting list.

However, my fear is that Andrea will not survive on a waiting list. I also understand that in a case of medical crises, the appropriate course of action is to arrange an admission to a local Emergency Department for treatment of the medical complications of starvation. This was the advice given to us. However, this course of action fails to recognise that the starvation that leads to the medical problems, is caused by a psychiatric problem, anorexia nervosa. Anorexia is a brain based psychiatric illness for which my patient needs treatment. At this point Andrea is not choosing to not eat; she cannot because of a neurologically based problem that is exacerbated by starvation. The only treatment that will be helpful for my patient is nasogastric feeding in a psychiatric/medical facility. This will begin to reverse the effects of starvation on her brain, which will in turn allow her to make choices to eat.

This will neither be achieved in an emergency department, nor in a medical facility with no expertise in anorexia.

Unfortunately, the Private System will no longer provide this treatment option.

We are reliant on the Public System to provide the appropriate care for Andrea.

Denying Andrea treatment based on the location of her residence is absurd. The adult unit at Westmead is an excellent facility that is able, and prepared to take action to save this woman’s life. I understand there is capacity to admit the patient and the treatment team is willing to do so.  The patient is willing to be admitted to that unit. If this does not happen in the immediate future there is a risk of imminent death.

The GP’s plea

(A letter to Minister Skinner, March 20, 2012):

I am seeking your urgent assistance relating to a seriously ill patient under your jurisdiction…. In summary, we seek your assistance to:

1. Make an immediate ruling such that our patient can be admitted to Westmead Hospital within 24 hours

2. Westmead Hospital is directed by your office to accept the patient immediately

3. Treatment can continue at Westmead at least until she can be discharged.

How to Help
One way to help Andrea, and others like her who are in need of care, is to sign this petition – it already has more than 800 signatures but we need more than 1000 to get things moving:

http://www.change.org/petitions/nsw-minister-for-health-it-s-time-to-provide-adequate-care-for-eating-disorders-patients-in-nsw