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Why Is Getting Help Such A Struggle?

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.

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9 Comments

  1. Lisa B

    You’ve managed to encompass our journey here in Canada. We presented at the ER more times then memory will recall. Each and every time reinforced that the illness trying to end our child’s life was not worth the effort they would have needed to put in to help me save her. We are almost 11 years out from diagnosis and gratefully, our cherished child is now in recovery and NO parent should have to endure what we have. My heart is with you.

  2. Elaine

    I had a very similar experience with my daughter except it was a new diagnosis that I had been struggling with for three months. We ended up in a week of acute food refusal on the background of extreme restriction and I was at the end of my tether. They sent us home despite how unwell my daughter was and told her she was medically stable and not dehydrated. Of course her anorexia heard ‘I’m not sick enough’ and she stopped drinking fluids. By the time we were admitted she was dehydrated and hypoglycaemic and with an abnormal ECG.

    We went on to an inpatient admission which was lengthy and quite traumatic for all of us and we are working heard on meal management and I think (touch wood) making progress.

    But I share your frustration about having to advocate so strongly for my daughters care and I agree that there is a real problem with lack of understanding and stigma.

    Im hoping that the illness loosens its grip on Grace and sending love

  3. Kerry

    i agree, very few hospitals have experienced staff for these patients and that needs to change. Our child’s doctor knew she needed to be admitted and had to call around to different hospitals after being told they didn’t have a staff to treat her.When you’re trying to save your childs life and get these kind of answers it’s like no one cares. I thank God for her doctor for being persistent in finding a hospital that had experienced doctors, RD’s, therapists, for eating disorders. It saved her life.

  4. Lisa

    We didn’t get this far, thankfully, but I also experienced here in Canada how poorly eating disorders are diagnosed and treated by our system. Family doctor said my daughter didn’t have an eating disorder despite very obvious signs. We were just incredibly lucky that we caught her early enough so she responded well and ate when I fed her at home – all thanks to a Facebook groups input. Diagnosis and treatment by the many parents on this group. In the middle of a pandemic I think the healthcare system here has been overwhelmed with ED patients. In the end I found private insurance funded help in an excellent dietitian and FBT therapist who both had worked in ED clinics.

    This experience reminds me a lot of how we were treated when my daughter was an infant with “colic”. She’s now lactose intolerant which truly makes me wonder.

    It’s lef to me having a huge mistrust of our medical system.

  5. Leslie

    I have found the same “inconsistent, discriminatory, substandard, uncommunicative service” in Canada. My daughter has an eating disorder as well as several mental health conditions. My frustration is how bifurcated the mental health field is. When she is in the throws of her mental illness and in need of hospitalization, her eating disorder is ignored to a criminal degree. They REFUSE to weigh or monitor her physical condition and allow meals to be returned uneaten. When this goes too far and she is transferred to the EDU (next door or across the hall), the eating disorder is the focus and her mental health therapy is put on hold…until her behaviours become too unstable to continue treatment and she is returned to the psychiatric side.

  6. Karen

    This article could have been written by me!! My daughter is battling AN, and has for years. She is/was an outpatient of an Eating Disorder clinic here in Ontario, that is run through the HOSPITAL! After many months of resistant treatment through the clinic, they said – repeatedly, I might add – that I should take her to the ER if she continues restriction and food refusal. And so I finally did. I tremble as I write this, because I am still so angry. The triage nurse was exceptionally rude and dismissive, and once she was registered, we waited…and waited…and waited….until a volunteer approached us and told us that the doctor won’t see her and she has to take it up with the ED clinic. They rejected her admission. It undermined everything that we were trying to get through to her, about how serious this is, and completely contradicted the directions of the Clinic. My daughter felt validated that “see? It’s not serious”.

  7. John

    We have similarly had extreme struggles to get help for both our
    daughters in New Zealand. The eldest started like many during Covid but
    was hospitalised due to medical instability in March 2021. She has since
    had an additional stay in paeds and two stays in the psychiatric unit in
    Auckland due to extreme thoughts and behaviour. We have been told she
    is a “complex case” and there is not the resources, staff or facilities
    available to help her currently, and are waiting for her to become
    “unstable” again. She sees a psychiatrist to monitor her medication and
    has weight and obs checked, but does not have access to an eating
    disorder clinician, psychologist or dietician. The youngest was also
    diagnosed 2 months ago and is still on a waiting list. We enviously read
    support group posts from families in the US getting help, support and
    advise for different levels of care required. Does anyone know if there
    are any countries that would have a facility available to treat a 14
    year old from New Zealand?

  8. Meg Metzger

    Your letter and experience is SO important for beginning to change Emergency Room (ER) treatment of loved ones with eating disorders (ED) and providing staff feedback. I hope they will share your letter to other hospital ER’s throughout NZ. This is an area I’d really like to work on along with Medical School curriculum improvements on ED and continuing education classes for pediatricians. We had similar experience in our ER in Bellingham, WA and fabulous admittance care at El Camino hospital in Mountain View CA where I’m still intending to provide a pizza party or make a donation as they were working so hard with covid and went through all the steps to retain my daughter and care for her during her 3 week hospital stay for medical stability.

  9. Jacqui

    Wow this is such a familiar story but could be and has been similar thousands of miles away in UK. Its tragic to think that so much suffering goes on around the world and the global deficiencies in healthcare for an Eating Disorder.
    it also makes me angry that it is 15years since my daughter had AN age 12, and I had to fight for help, fight for admission, then fight for community follow up but by 2yrs later we got her there. 4 years after recovery she relapsed on going to university and she got so ill, physically scarily so, we ended up in A&E after she collapsed and fitted for 2nd time and they still sent her home, her AN delighted in the fact she walked out and we were rubbished. it is frightening as a parent to think you might lose them to death due to healthcare neglect. Her health deteriorated further over next year and eventually mental health wanted to admit her as emergency but had no inpatient beds!!
    A friend pulled some strings to at least get her community clinic support and it took her 3 more years to recover. Today she is a 26 yr old, eats. although vegan, a healthy-ish weight, works as a speech therapist, struggles with severe anxiety and now waiting diagnosis for autism, which is likely to be the case (Id felt a few times, especially when sick she may be, now given hindsight and noticing how things have evolved for her, I think she will be found autistic. I still get angry, that she has had to fight so hard to be helped, I am angry that she has health consequences, osteoporosis, gynae problems, and possibly some endocrine and kidney issues, but who really knows, they don’t ever follow them up. She presents with niggly health problems and gets passed around specialities. I am proud of how she tries so hard to live a productive life, to deal with health problems positively, but as a parent it breaks my heart that her life is such a struggle as services let her down as a child, as an adult and still fail her. I will always worry as she/we don’t know what damage/trauma her body endured.
    I want a healthcare system more aware of AN, I want funded treatment options. All An sufferers should be screened for autism there is such a co-morbidity. There should be greater family involvement, and I want proper holistic follow up care for them.
    In some ways I feel lucky, there are many youngsters in the UK have lost their lives to ED, and BEAT the ED charity and other people fight so hard for better care. But it doesnt seem to make much progress. In UK there are a few good centres but for most access to any care is still poor.

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