The enormous task of training staff and funding eating disorder services is overwhelming. This problem is so huge that it is hard to measure. Shame, stigma, uneducated health professionals, long waitlists and rejected referrals mean there are no accurate statistics.
The petition Rebecca Toms presented to parliament got over 3000 signatures, but what do those signatures mean without the stories that support them.
Trigger warning- contains distressing content about self-harm eating disorder behaviours and very sad stories
I would like to thank the amazingly brave people who have shared their experience. If health professionals (including me) do not listen to this feedback, what is the point of going to work? If you are a health professional reading this, have an open heart, and an open mind. The system is flawed, but we have to support our patients, and we have to demand more funding and better service from trained professionals.
Our daughter has had an eating disorder for 7 years. She has had many near-death experiences. We are reliant on PMH taking her in to save her life. We’ve had to nurse her at home while waiting to see when and if a bed to comes up.
We’ve had to decide when to rush her to A and E, sometimes after she’s collapsed. It’s a truly terrifying situation to be in, she can get into a life-threatening medical state within hours, I feel like her life is on my shoulders, it’s the most frightening situation to be in. I’ve had to take month and months off work unpaid to look after her, on top of spending $300 plus a week on Therapy and medical bills. The financial cost has been huge but not as devastating as the effect it has on the whole family watching her slowly starving herself to near death and seeing her torment and suffering. The mental and emotional toll on us all has been overwhelming and unbearable and we have all had to seek support at our own cost.
I think cancer would be easier, people would be more supportive and understanding and I wouldn’t have to beg and plead for help and spend so much time and effort to find someone who was trained in EDs and could actually see her within 6 months! There’s a lot of discrimination and inequality when it comes to diagnosing and treating Eating Disorders. There is an extreme lack of trained doctors and therapists available to provide adequate treatment.
Early prevention and education is imperative. We are failing miserably on both! I wouldn’t wish an Eating disorder on my worst enemy.
I am writing to you in regards to my daughter Bella. Recently I had my hopes up about potential help for Bella from CAF. We waited months to be denied any treatment or solutions to what is going on in this child's life. Unfortunately, the appointment was most disappointing in that we are still dealing with a very withdrawn and underweight unhappy child who has said most of the time she feels on a scale of 10, she rated her mood as a 1. Last week she was beating her head against the wall and stating that she didn't want to be here anymore. As a parent, I am distressed that over the year one problem has to lead to 10 more problems and my daughter is suffering and is not getting better. Had this been addressed properly a year ago this problem may have not escalated into what it is today. How much does this child have to suffer before she gets the help she needs? A feeding tube? Life support?
In the last year, I have been put on so many waiting lists for a specialist in eating disorders and depression. We have taken her to people whose schedules could take her on as a client. I'm not sure they are the clinical specialist that she needs. Because we have not seen any improvement in moods or eating. We have been through two psychologists & a nutritionist, through our own due diligence of exhausting phone calls and emails. This must be a huge problem as everyone seems to be on a year waiting list. And we are desperate to see someone who can help her get better. Unfortunately, she has not been classed as a priority as she is currently putting food in her mouth, even if it's very little and probably not enough for this child to grow or for her organs to properly function.
The other week we went on a bike ride which was a part of our normal family rituals and she had no energy to pedal, she could not pedal 5 minutes before she was crying her muscles ached and her heart was racing, we had to go home where she punished herself by not eating. She is unable to be on the school sports team to participate in cross country or any sport that requires energy. She can't go to sleepover or kids birthday parties as the food situation is too difficult to deal with. Her life has completely changed in a year and so has our family dynamic.
Every Dr appointment we try to go to, to get her any sort of help, she refuses to go. She screams and kicks and fights us every step of the way when there is a weigh-in at our GP and cries and tells us terrible things and tries to hurt herself. I can see every bone in her body and every Dr visit we get her too she is 1 kg less, if this is not an issue, then the system is completely flawed.
Last week she lost 4 kg, but still, she is not a priority. I am angry that this child has had to suffer for a year, that our family has had to suffer for a year, that I'm losing this child who continues to withdraw or find any joy in anything. Without proper medical attention and a plan of action to get her better, she will get worse. She is destroying our family with her lack of enjoyment in anything, we are limited to activities and have to watch her around the clock so she will not self-harm.
I am afraid the only time someone will pay attention to us is when she's admitted to the hospital. I want someone to help us. I want to be referred to the eating disorders clinic so our family can get a plan of action to help save her. These continued habits are preventing her from participating in life. No way is this normal behaviour for a 12-year-old.
I am begging for help!
My daughter has a generalised eating disorder that ranges from overuse of laxatives, starving, purging, binging in any combination.
This is in addition to a number of complexities that have resulted from an education system that does not cater for alternative learners - the highly gifted, the autistic, the learning or processing disorders, the undiagnosed complexities, and the fully assessed and diagnosed students in an education system with untrained, and inflexible teachers who bully and shame instead of treating each child as an individual, with individual learning needs.
My child does not fit the education system, as a result, she has been treated like she does not fit at all.
My child has been involved in a competitive sport, at the National and International level, where she has been body-shamed by students, coaches, and parents alike. Her size has been gossiped about by adults, in front of children, in front of her.
My daughter is amazing. She is clever, talented, loving, funny and kind. She always looks out for her friends, she is desperate to be accepted. She binges, purges, starves, self-harms, and hides away.
Innately she blames herself for not being accepted in a system that does not cater for her. And now we have reached the mental health system, which is also refusing to cater for her.
As a complex presenting teenager with autism, she has been discharged from care as an attention seeker. Despite not wanting any attention, and despite being covered in scars, not wanting to leave the house, and having severe anxiety and severely dysregulated eating patterns.
No help was offered for her eating disorder as she didn’t admit it was a problem. No referral was made to the eating disorder clinic as she has a normal BMI and has other concerns that aren't "a simple eating disorder". She doesn't qualify for any help.
Her school have said they have no space in their guidance counselling system for her, as she is too complex, they've also asked that she discharge from school so their audit doesn't look bad when she doesn't attend school.
GP referrals to multiple private psychologists have been met with no response at all. None. My daughter is unable to regulate her nutritional intake, and the cycle of starvation, bingeing and purging result in guilt, shame and a lack of self-worth.
She hides this from everyone. Multiple attempts to get back into the CAF system have failed. A formal complaint and follow-ups have been filed, but the DHB doesn't even have a record of receiving it, despite it being submitted via their own complaints procedure. The system is failing so badly that my teenager is at constant risk, but no help is available for psychological care and treatment. It is a system that simply blames a child for her failures and then refuses to step up. The system puts my child's life at risk every day, it has created and perpetuated so many issues and it has consistently blamed its own failures and lack of care on my child, and it is actually killing her.
Adults failing to do adult's jobs for which they are qualified and paid. They say I need to understand how busy they are, how distressing it is for them, how tired and worn out and underpaid they are.
Actually, they are simply past caring. They use their words to blame, shame and keep children at risk as they talk up their own knowledge. There is no adjustment for children with autism, children with trauma, children with a nutritional deficiency that is affecting their ability to think, no adjustment for a teenage brain without a prefrontal cortex.
My daughter started life as a very sick baby. She has lived through thousands of earthquakes and heard the mosque shootings. I myself have never heard dozens of people being murdered, but my child did when she was 12. And yet the extreme distress my child is in is called "attention-seeking" by your mental health system, they think she will "grow out of it" she's "just a difficult child". Actually, she's amazing, she is strong, she is worthy of support, she is worthy of having a happy life, and she is not responsible for the lack of money, professionalism, or care in the mental health system, or the education system. She is the victim.
I was an in-patient on C Ward in 2016, aged 19, after a lengthy admission to Christchurch Public Hospital. I was essentially forced to gain weight without any help with the mental side of things - what caused my eating disorder/how to cope with the feelings/why I feel that way, etc. I was seen briefly as an outpatient, but discharged due to losing weight; an indication that I was struggling and that simply “forcing weight gain” is not a solution if you don’t follow up with support for your mental health.
I’ve been able to “manage” my anorexia for years, but now, aged 24, I have relapsed and have been denied any treatment from the Eating Disorder Services at Princess Margaret Hospital. My eating disorder was labelled “too severe and enduring,” and I was told “younger people have a better prognosis,” hence why they receive all the help, even if they’re not committed and determined to recover. I, however, am very committed and determined to recover from my eating disorder, yet I won’t even be put on the waitlist, for either inpatient or outpatient support. My Specialised Mental Health Team has given me an “Advanced Care Plan” (aka end of life plan), as they believe that I am going to die from my anorexia. I feel as though rather than advocating for me to receive the support I need, they’ve instead given up on me. I understand there is a huge amount of strain on services, but EVERYONE has the potential to recover, no matter what their age, no matter how long they’ve had their eating disorder, we all deserve equal treatment. If this was cancer, I’m sure the government would do anything in their power for people to get the treatment they need - why is this any different?
Without naming names, I know a girl who is currently inpatient on C Ward who posts on social media that she’s not following the rules, not using the place to help her, and admitting she’s going to lose all the weight as soon as she’s discharged. For someone like me, who is determined and committed to recovering and would actually use the services offered, this is incredibly frustrating to see. And this is her SIXTH admission, so clearly it’s not helping, and it won’t unless she wants it to. A person’s will to recover is what should determine whether they receive support, not their age.
~H, aged 24, had an eating disorder for 6 years
I have been waiting nine months for South Island Eating Disorders Services to contact me. I am not underweight, therefore I am not seen as a priority. I’m stuck in a yo-yoing pattern of losing weight, my body not coping with it (I end up needing medical attention), which then scares me into gaining weight, but still receiving no specialised eating disorder support to help me with the mental side of recovering from my eating disorder. I feel ignored just because I’m not underweight/on my deathbed. Anorexia is a mental illness, we all deserve equal help, it should not be purely determined by our weight. And despite having been inpatient before and never recovering after years of trying to, PMH won’t take me as an outpatient, which then fuels the disorder - it makes me feel like I need to lose weight and become medically unstable to get help.
~J, aged 19, had an eating disorder for 4 years
I have generally been pretty ‘lucky’ with my ED. My body stays physically stable, even under immense stress which allows me to remain somewhat high-functioning whilst struggling with my eating disorder. It took so long for my eating disorder to get picked up, as I was overweight when I began to struggle with behaviours. Of course, professionals turned a blind eye to someone overweight experiencing disordered eating, after all, they’re losing weight. After losing over 1/3 of my total body weight, I was finally listened to and had a referral sent to PMH for some help. After waiting for over a year, I was finally able to be seen by PMH - the only public eating disorder clinic in the South Island. I had been struggling with my eating disorder for 4 years at this point, and as I write this, over 5.
After an assessment, I was offered 6, hour-long education sessions. These were to inform me about my illness, why it would be detrimental to continue the way I am and why I should be aiming to stop using the behaviours. They only offered me these sessions as I had shown improvement in other areas of my mental health, but still were not offering any real therapy. I also would be given “spot checks” to assess my physical health. After 2 education sessions with a nurse, I had been given the same handout on both occasions and learnt nothing. I am a student nurse, something they were aware of and had no knowledge deficit surrounding my illness or any other ED. At the end of these sessions, which were cut short, the nurse had given me some goals to work on as a way to prove I was engaging with treatment. I had had no follow up on my blood tests and had one physical assessment which showed bradycardia, postural tachycardia and some weight loss. I was told that although my weight loss was not encouraged, it wouldn’t be unachievable in the future if I didn’t use ED behaviours to get there. By week 5, I was meeting all my weekly goals, attending every appointment (although I was just getting handouts every time) and engaging in treatment the best I could. I had a blood test which showed a drop in potassium. I got told off for this, seen for 2 minutes by the consultant (who I had never met before) and prescribed a month's worth of potassium supplement at 2400mg a day - a very high dose. They did this without arranging any follow up to check my potassium levels again. After speaking with me for 2 minutes, the consultant and nurse told me that I needed to engage with treatment and that now is clearly not the right time to try and make changes. They told me they could not extend my time under their service and to ask for a re-referral when I felt “more inclined to make an effort”. I had attended every appointment, met every single treatment goal set out by them, been fully compliant with anything that was asked of me and I still was not seen as 'sick enough' to warrant treatment. They told me that I would end up in hospital at the same time as saying I was to be discharged from the service. How is that not enough to warrant ANY further treatment? This was all happening whilst other people my age and older were being admitted to the service for their 6th or 7th time and offered more extensive long term treatment.
I now may never get the chance to recover from my eating disorder. We are told to reach out for help but when we do, we either don’t get taken seriously or we aren’t sick enough to warrant treatment. It scares me to think how unwell I might have to get before I will be able to access treatment. There is no way I can afford to go private and my parents are unwilling to offer me that support. I understand that I am lucky to be healthy, and maintain a great baseline level of health even when I am in the depths of my eating disorder, but I cannot wait for the day where I am unwell enough to access treatment for my eating disorder. By that time though, it might be too late.
~H, aged 23, had an eating disorder for 5 years
My first experience with ED services was when I was 19, where I wasn’t admitted until I was critically ill. I spent for months inpatient at PMH where, yes, I gained weight, but received no help with the mental side of things, so a year later I relapsed to the point where I was severely underweight and stopped eating and drinking. Whilst in hospital I was evaluated by the mental health team, where I was deemed “mentally capable” and was discharged after being given an end of life plan/advanced directive because if I kept going at this rate I won’t have long. I was only 21 and had no family/support after being given the advanced directive, and was then discharged. I burst into tears and threw it back at them. I felt so given up on. My parents were absolutely disgusted they would even give an advanced directive to a 21-year-old in the hospital, alone.
Since then I’ve had another admission to PMH and multiple medical hospital admissions, but now that I’m older (22) I feel like the system gives up on you because they see you as a lost cause. They say we will work on “managing living with anorexia” and have given up on the notion of RECOVERING from anorexia because I’m “too old.” They only admit you to C Ward if you are literally nearly dying, or they see you have a chance of recovering, aka all 18-year-olds or younger.
It seems 2 admissions is enough to deem someone “severe and enduring,” yet I know of people who have been admitted 5+ times.
~anonymous, aged 22, had an eating disorder for 6 years
It’s 2.00am in the morning and I am awake…. searching sites on my computer to see if my 14-year-old daughter is OK. Even though she is down the hall in her bedroom.
Is she communicating with others on Facebook, Instagram and Tik Tok about the latest fads in calorie counting or ways to punish herself if she overeats? Is she searching for the best way to commit suicide, and has she tried phoning Suicide Help Line or Youth Line for no one to pick up her call yet again?
I live on the edge, day after day, night after night hoping she will come to me for help but she doesn’t.
My daughter took an overdose at age 14 because the pain was too much for her. She did not know what was going on in her head and had kept it a secret. I had no idea this was happening… she felt helpless, and so did I! What a shock! A parent’s worse nightmare! I had no control over what was happening to her.
I was living every day wondering, worrying, I was anxious, I was scared… would I find her dead in the morning? I found creative ways to communicate with her so I would get some kind of response from her to know she was OK.
My daughter cooks her own food and eats alone… that is when she does eat. I can not control that. I make her lunch, her teachers told me she throws her lunch out… every day. I watch her eat next to nothing, restricting her food intake, measuring every bit of it, getting thinner and then I watch her binge eat to the extreme, 3000- 5000 calories in 20 minutes… she tells me she wants to die and all I can do is sit by and watch her! It is so hard to accept and so difficult not to say the wrong thing. She now tells me she purges too… I wanted to commit her but I was told she would not qualify for an eating disorder because she was not thin enough!
My daughter was under the Princess Margaret Hospital Metal Health system for a year over this entire time, attending weekly sessions with a psychologist. My husband and I made it quite clear of the seriousness of our daughters eating issues.
When our daughter attended the next session and was asked questions regarding this, our daughter now tells me she said ‘no’ to all the questions and was told "you look alright to me". Clearly, nothing changed! We continued to watch her struggle and her eating habits worsen along with her mental health!
Two years on our daughter is now 16 and still struggling! She needs professional help but where do we go? Who do we trust? Who can she trust? The last place I would go is back to is Princess Margaret Hospital. She felt abandoned. She felt let down… she was told she was a minor case! This made her feel invalidated! She has never forgotten this… she was not given the appropriate support and care.
I live with this every day…