This post was originally an email sent to us at F.E.A.S.T. by a distraught mother who wanted to tell her story. It is a letter of complaint to the hospital that made accessing much needed help so traumatic and difficult for this family in New Zealand.
On Friday 19/12/20, my daughter Grace (diagnosed with anorexia nervosa) had an urgent appointment with CAMHS following calls to the crisis line and a recent visit to the Emergency Department. The CAMHS team assessed her and said she needed admitting to hospital and 2 staff members walked us across the road to the Emergency Department. Upon arrival we were placed in a room with my extremely distressed daughter while the team went to organize admission.
At this point, we were of the understanding that, while it may take a while to organize the right pathway, our daughter would be admitted. The relief we felt that we were getting a much needed response to a huge cry for help was immediate. Coming to hospital was a hard step, but due to our daughter’s rapidly deteriorating state of mental health and extreme distress, we knew we could no longer keep her safe at home. We communicated this very clearly and repetitively to CAMHS and hospital staff.
After a few hours the CAMHS team told us that though they felt Grace needed admitting, they were unable to secure a bed. I was absolutely shocked and overwhelmingly distressed. We had been battling this terrible illness at home for months and I was clear with everyone that we had come to the end of our ability to cope at home due to the rapid escalation of behavior. I didn’t know how to cry out for help any louder. My daughter was also telling staff she knew she needed more help than we were giving her at home, and that she was no longer coping.
We had sat in A&E with our anorexic daughter for hours without her being seen by a doctor or being offered food or water, watching precious meal times tick away, waiting for help. I cannot describe how upsetting it was to then be told to take her home. Just writing this is emotional for me.
We were told that before discharge, Grace would see a doctor, do a sitting/standing blood pressure and have a blood test. I have never felt to desperate or let down in my life. This illness puts immense pressure on families and is so very difficult to cope with. We sat in the Emergency Department for at least another 3 hours with no contact from a doctor. My daughter cried the entire time we were there. By now we had missed 3 precious, important meal times and she was nil by mouth since breakfast – a really big deal for anorexics and their families.
A nurse came in to discharge Grace. She had not seen a doctor, not had her blood pressure taken and had not had a blood test. I was put in the horrible position of refusing to leave without seeing a doctor for the safety of my daughter. After more waiting, a doctor spoke to us and repetitively said (in front of Grace) that she is not medically compromised and had to go home. This made a bad situation worse as it is difficult for someone with an eating disorder to accept they have a serious, life threatening mental health illness, so Grace felt a doctor was officially saying there is nothing wrong with her.
At the time, because of the behavior at home that we had been dealing with alone, I felt like I was fighting for Grace’s life and I was extremely distressed myself. I needed to desperately advocate for my daughter by arguing with a health professional who should have been helping us. All of this conversation happened in front of Grace with emotions running high and I still feel angry at myself for allowing that to happen and being put in that position. In the end, it was agreed that we would be admitted on the pediatric ward (Grace had recently turned 16 ) because my husband and I ‘needed respite’.
We arrived at the hospital because our daughter had lost significant weight, was extremely distressed and was communicating clearly that she felt at risk of self harm and was having new and strong suicidal thoughts. We communicated this clearly. Respite was needed, but this also felt somewhat dismissive of what Grace was going through. We arrived at the pediatric ward after 8pm (arrived at the Emergency Department around midday) with an anorexic daughter who had missed five out of six of her meals, had had no water or hydration, and had cried relentlessly the whole time we were at the Emergency Department. We were all emotionally and physically exhausted.
I wish the Emergency Department staff knew that when an eating disorder enters your life, everything is flipped upside down and normal life comes to a halt. It is by far the hardest thing I have ever had to cope with and I will never be able to fully express the trauma of bearing witness to this illness torturing our daughter. I still struggle to understand why our family had to be put through so much extra pain. Grace ended up in hospital for nearly two weeks, some of which was with a NG tube. We really needed the help we received in our time there. Pediatric staff were great and I felt in a much better place to continue care at home upon leaving.
I look back at the traumatic admission and feel that we experienced an inconsistent, discriminatory, substandard, uncommunicative service that failed to respect my daughter’s needs and dignity. If we had accepted the discharge I still believe my daughter’s life would have been put at risk. Months later, she is still very much in the grip of this illness, and I will never understand why getting that help put our family through so much trauma when we were already going through hell. I wouldn’t want any other family to go through this.