"Dealing with an eating disorder"

It’s taken a long time for me to feel able to publicly voice my opinion and my families experience over the last 2 years with my child's eating disorder and Perth Children's Hospital (PCH). It’s something that still now haunts us all and I feel it is important to be said.

My child, about 2 years ago, started restrictive eating to the point where we were referred and presented to Princess Margaret Hospital (PMH) Emergency Department (ED) as they were dizzy, postural hypotension, blue extremities etc.  ED sent us home stating they were relocating to PCH that week and my child's ECG was fine so no need for admission. My child had lost 15KG in 3 months and hadn’t eaten or drank anything substantial in over a week!

Off we went, back to the GP that week who was very concerned and whilst waiting for bloods to be taken, my child collapsed; the blood sugar level of 3.0, ECG showing cardiac arrhythmia and they looked grey. So we presented to PCH ED this time and my child was admitted with cardiac monitoring, being re-fed through an NGT and IVT as they were dehydrated. My child was so aggressive, frightened and combative, it was awful. They said such awful things and we had no idea what was happening and why they weren’t our beautiful kind loving child anymore.  

That first week I spent in a daze, de-escalating their ever-growing irrational thoughts, fear and defiance. I don’t think I slept the whole week trying to unknot the NGT that they had tied up, stopping them tipping the feed down the toilet, stopping them hitting their head and stomach etc. During this time, I felt the nurses spent very little time with us, in my opinion, just doing the basics really. I stood crying my eyes out in the lounge area at 3 am whilst nurses just look on, then carried on with their duties. I felt alone, betrayed by the people who were supposed to care, my fellow nurses.

The admitting team would come round and offer support and advice telling us what the plan was and about restraining my child if they didn’t comply etc. Again, I felt so lost, so scared and alone, so heaven knows what my child felt like. My child pulled out their tube after many hours of convincing them not to. The nurse said, well you could have stopped them... I burst into tears. I felt this lack of thought and compassion and inconsistency in care carried on throughout the weeks we spent there.

I believe procedures that were not followed correctly, despite having very clear instruction. For example, nurses were not supposed to tell the kids their weights but I believe some nurses did in secret, not taking note on what was consumed, in fact, my child showed me all the food they had stashed in their locker! I believe medications were being missed or arriving late, my child ringing for the toilet, it took 30 mins to answer the bell, by that time my child had disconnected their feed and gone to the bathroom themselves, even though they were told not to.  

My child hadn’t showered for 3 days as they were in a shared room with another young patient of the opposite gender, with a shared bathroom and no lock. No one asked them if they had or why. In my opinion, this is basic nursing care! These children aren’t just being obtrusive or naughty, they have a mental health illness and, in my opinion, should be cared for by experienced nurses working in the mental health field, rather than just babysat. 

Being told by a dietician, in my opinion, very rudely, when they were going to discharge us home, as my child was at a safe weight and I was distressed as I felt so unprepared, well we can’t keep them here forever. We as a family felt too unprepared, overwhelmed and frightened and in my opinion, we were offered very little support or advice on that day. The weekend was horrendous and volatile and my child got admitted again a few days later after eating nothing.

The eating disorder program was helpful and supportive but again, the lack of compassion and ability to see things out of the box was, in my opinion, frustrating. Our lives got turned upside down and we both worked full time so it wasn’t easy to juggle kids, school, work etc and travelling to PCH 3 days a week and we didn’t have the luxury of family being here either. We made it work but felt the team were so regimental in their ways, I felt it was hard to live up to their expectations and requirements of us all. That’s what it felt like and that’s how it made us feel; like we were quite useless as parents, yet we were supposed to do all the hard work at home basically.

Every admission was, in my opinion, the same for the following year... just feeling like my child was being fattened up and sent home again for us to try to get them to eat. The number of books I read and literature I read I believe was ridiculous but necessary as I felt so uninformed and lost in it all; like we were on a waltzer ride just spinning and going round and round but going nowhere. My child hated going there, I believe because they felt they weren’t listened to and didn’t feel respected. I believe my child felt they weren't just an eating disorder but felt that’s all the staff saw in them. My child stopped engaging altogether and we struggle to regain their trust in us, that we're doing what we thought was the best for them.  

My child is intelligent, who I believe does notice the inconsistencies and the untruths told to them and they had lost faith in PCH and the team, except one lady, Sue (coordinator of EDP) who, we believe, was always truthful, supportive and caring to my child and our family and to this day, my child still respects her and a few of the nurses on 4A, Kieran for one, who treated my child as a person and laughed with them. He once said not to let the eating disorder consume you or be your life and, in my opinion, he was right.  

We decided to take a different path to what I feel the team wanted but I feel that one size doesn’t fit all. Every child is different and every eating disorder should be treated with that child in mind. This I feel, isn’t the case at PCH and that mental health services at PCH and in the community needs addressing urgently. In my opinion. I believe eating disorders are on the rise as are other mental health problems in the younger population and the support and help just isn't there. You go round the houses, I believe just to feel finished up at the same place. I believe the stigma and judgement is still there, even amongst the staff and this is so very disappointing and saddening. 

This is just a snippet of the issues we had at PCH, I feel I could write a novel but I believe something needs to change and in my opinion, something soon to protect and help our most valuable assets, our children.