Words are sometimes hard to find, when many emotions gush through one’s mind.
Exasperation, frustration, worry, fear, anger, pain, and everything in between.
This happens when I receive a letter about a dear daughter from her parents, and know that better education and training of health professionals would have helped all three be in a much brighter place than they are right now.
This is what I am finding – informed parents know what their child needs, and feel extremely helpless and powerless when the medical authorities don’t know and won’t listen (for whatever reason – perhaps their training has not included the signs and symptoms of eating disorders).
I pray that this much-loved daughter, a teenage girl, Elise, is safe and that her physical health at least is improving daily.
I shared her story around the table in Sydney at the NEDC
meeting today. Most members of the steering committee are public servants, psychiatrists, psychologists and academics. I am a co-chair on the ‘evidence from experience’ reference group. There are three of us on this group and we represent Australian ‘carers and consumers’ (not my favourite term for the parents, partners, brothers and sisters who lovingly look after people with eating disorders but I’m told this is the term that bureaucracy understands). ‘Evidence from experience’ is valuable and we need more of it. The more we can gather, the more we can make those-who-make-big-decisions aware of the urgency of the NEDC mission (to establish national health care guidelines for promotion, early intervention, prevention and management of eating disorders in Australia). Before the meeting, I asked parents if they had a message for me to share. Elise’s parents responded:
Our beautiful Elise is in hospital. Despite three-and-a-half years of ‘feeding’ and doing ‘family-based treatment’ as best we could (floundering since the closure of The Oak House) she continues to be so unwell. In terms of a message from carers/consumers for the NEDC meeting … how can we get medical people to acknowledge that families know their kids (and the illness) better than they do? The initial doctor we saw didn’t think she needed to be admitted because her “BMI was not low enough”. Luckily with our knowledge and support from F.E.A.S.T. friends, we refused to leave the hospital … they finally did an ECG and then took us seriously.
Things that we had to do/say to get her admitted…
We refused to leave the hospital and they were closing the paediatric emergency ward around us … as we watched every hour go by without nutrition (while they debated whether she should be moved to a psych ward at another hospital) we knew she was falling further and further into the grip of anorexia.
One doctor put a custard in front of her and said ‘just eat will you’.
We said: “Telling a child with an eating disorder to ‘just eat’ is like telling a child having an asthma attack to ‘just breathe’.”
We begged: “We have fed our child for nearly four years, she has been trying to do it by herself, she can’t do it at the moment, we can’t do it at the moment, we need your help to get food into her.”
Her heart rate has been in the low 30’s all week (at night). A few times they were considering ICU. She was so sick, we knew it and they were close to sending her home.
Once admitted (about midnight Friday night) the doctor told us the ED team would be in Monday morning and they would decide then on treatment!
We said: “If she had any other critical illness and the medicine was readily available, you would not tell us she couldn’t have it because it was the weekend.” To his credit the young doctor pushed our case and eventually they agreed to getting the tube in … but it was still the early hours of Sunday morning before the nutrition started going in.
Luckily, once Elise was in a ward the treatment has been better than our original hospital experience here in Adelaide in 2008. They have made nutrition the priority and have consulted with us about a ‘safe’ weight. The weight is slowly going on and the illness is raging because of that.
It breaks our heart to see our child so sick but it infuriates us that we are treated as if we don’t know her or the nature of her illness.
We hate to think what may have happened if we took her home.
I know this is just another horror story like you have heard so many times before … it just helps to tell someone.
Keep fighting for us and our kids. Hope to see you in Adelaide later in the year and we will definitely be in Brisbane in 2013.
* ‘Elise’ is a pseudonym. It is only by brave parents speaking up, that change will be achieved for others who follow. I look forward to meeting Elise’s parents in Adelaide this August, during the ANZAED
and other eating disorder meetings. It will be a positive time for everyone working to ensure that the needs of children like Elise are met more quickly.