By Amy Hanley
TRIGGER WARNING ⚠️ This blog contains content of distressing experiences. If you have any concerns regarding eating disorders please contact a qualified professional.
It is strange to be sitting here typing this; I never thought I would turn into an accidental advocate.
When my daughter was first diagnosed with Anorexia Nervosa, I had no idea what I was up against. I didn’t know anything about eating disorders, and I especially didn’t know that they are a mental health condition.
I remember in the early days before I knew anything, I had no idea what to do to try and help her eat. There were frustrating mornings where I was trying to feed the dog, watch her eat, and get ready for work all at the same time. I am guilty of being unsupportive at first, because of how overwhelming the situation was. I remember at one point saying, “Just sit down and eat,” which I now know is exactly the wrong thing to say, and completely unhelpful. But this was long before I knew what she was thinking and feeling. I just didn’t understand.
I think there is still a huge lack of education and awareness about what eating disorders are. This is partly why I started the Mind EveryBody campaign, because I wanted people- especially those who actually have the power to change the healthcare system- to understand what it is like for families and sufferers. Without having witnessed it myself and gone through it as a caregiver, I never would have understood either.
So I am hoping through stories, people can gain an awareness of what families and sufferers go through, how challenging eating disorders are, how it affects so many people besides the sufferer, and how the flaws in the healthcare system are so detrimental to recovery.
I will preface this by saying one thing; When I say eating disorders affect entire families, I am in no way placing blame on someone who is suffering. Eating disorders are not anybody’s fault. Nobody is to blame for them. But that does not change the fact that there is a knock-on effect.
I think it is important for the overall impact to be understood. The government has to bear the cost of multiple hospitalisations for someone suffering, the cost of admittance into psychiatric facilities, the cost of private facilities in Ireland or abroad if the HSE cannot offer care, the cost to pay families carer benefits or sick leave, because it is impossible to work fulltime and care for someone who is unwell.
So with that being said, here is our story from my perspective, and why I started the Mind EveryBody campaign.
My youngest daughter was about 13 when we first noticed she had some issues around eating. I am a picky eater as well, so at first I didn’t pay it too much heed. But over time it became more and more of a problem.
When she was about 14 I believe, we went to the GP saying we were concerned, and they put in a referral for CAMHS. Months passed, and months passed, and her turn in CAMHS did not come up. By the time her turn finally came, over a year had passed. During that time we had her in private therapy, we contacted the GP several times asking for more referrals to CAMHS, and we called CAMHS multiple times asking where she was on the waitlist.
Her condition when first referred was concerning but not bad, but after the year had passed her condition worsened and worsened. In the meantime, we didn’t have a diagnosis and didn’t particularly know what to do, other than to keep calling and pushing for her to get into CAMHS.
When she did finally get accepted into CAMHS, she was put on a waitlist for an inpatient unit. She was not offered therapy, because it was thought that she was too malnourished to benefit from it. I did understand this to a certain degree, because a book I was reading at the time mentioned that studies had shown people suffering from Anorexia Nervosa had changes in brain structure.
Besides the long waitlist, this was one of my biggest points of contention. While to a degree I did understand, I also thought it would be helpful to have therapeutic support so she had an opportunity to talk to someone. Even if her behaviours did not initially change, maybe she could have gained some confidence, resilience, and better self-esteem, since eating disorders are largely about how someone feels about themselves. I am not an expert, so I don’t know, but as a parent this is what I felt.
I have Generalised Anxiety Disorder, and several years ago I finally found a therapist who literally changed my life. I still have ups and downs, I will never be cured of anxiety, but I was given the tools to understand myself, help myself, and learn to maintain the condition and cope with it. I wanted my daughter to have the same opportunity.
While waiting for a bed in an inpatient facility, my daughter’s physical condition declined and we brought her to A&E and she was admitted to a children’s hospital. They initially told us she would most likely be home in a few days, but a few days turned into a month. This unexpected development meant an immediate departure from work to be with her in the hospital, because she was in a high dependency ward and needed 24/7 supervision.
This was her first hospital admission, and we had no idea that we had the right to ask for a Special (a Health Care Assistant, or HCA, that will stay with the patient when the parents cannot). As a result, I spent every other night with her in the hospital, spent what felt like a fortune on parking, tolls, and petrol, and I could not care for my dog and needed someone else to mind him for a month. My oldest daughter was constantly back and forth between my house and her dad’s house, and a mouse decided to have a field day in the home that I had essentially abandoned. I remember waking up some nights and having no idea if I was at home or in the hospital.
During this time the focus was on medical stabilisation, so my daughter was not in school. She was largely reliant on the Nasogastric (NG) tube for nutrition, though she was eating somewhat orally. One memory I have from this time was watching Toy Show in her hospital room. It was a strange experience to think that we couldn’t be home to watch it.
My daughter finally got a bed in a psychiatric inpatient unit just before Christmas, and was transferred there from the children’s hospital. While she was in this unit, she was finally able to attend the on-site school, participate in activities, and attend Family Based Therapy. She was in this facility for 3 months, and we did notice improvements. By the time she was ready to be discharged, her eating already started to decline, but the decision was made to discharge her anyway.
Less than a week later, she was back in A&E after not eating all week at home, and was admitted to another children’s hospital. I thought she would only be there a few days and go straight back to the previous psychiatric facility. Her bed was still warm after all. But we were immediately told she wasn’t in the catchment area, so they couldn’t take her.
CAMHS tried referring her to other facilities, but we had no luck with any of those either. She was partially reliant on the NG tube at the time, and none of the public facilities would take her for that reason.
So then we decided to try private, but my insurance was denied because they considered my daughter to have a pre-existing condition.
After months of getting nowhere, the decision was made to do a trial discharge back home and under the care of CAMHS, with regular check-ins at the hospital. Though she had no mental health supports for the 3 months she was in the children’s hospital, she was eating better orally so the discharge at the time seemed reasonable.
After about two weeks of being back home, my daughter was again back in the children’s hospital. This time for four months, and this time completely reliant on the NG tube. I believe at this stage she was weight restored, yet she still was not offered mental health support until a few weeks before she was discharged.
So now up to this point, my daughter has been in children’s hospitals for a total of 8 months, a psychiatric facility for 3 months, and home for 3 weeks. The 8 months in children’s hospitals meant no mental health support for a mental health condition, and no school.
During this hospital admission, it was clear to everyone involved in her care, and us as parents, that she was not well enough to be discharged to the community this time. CAMHS and the children’s hospital sent multiple referrals to the psychiatric facility she was previously an inpatient of, since that was the only facility in the country that can facilitate NG feeding and mental health support.
They repeatedly denied her care, and we were given three different reasons. The first was that it was not her catchment area, the second was that the HSE didn’t feel it was “clinically appropriate,” and the third was that they felt she could no longer benefit from care there. Remember, this is the ONLY facility in the country that could take her, and she was denied a place.
This meant that she was stuck in the children’s hospital with no actual care plan. The psychiatric facility in our catchment area would not accept her because she was not eating orally. The private facilities wouldn’t previously accept her because our insurance would not cover it, so we changed insurance providers, got approval, but still could not get private care because nobody would accept her on an NG tube. The reason we were given for this is that they don’t have the facilities (NG feeding options) to support her, so if she required stabilisation she would be sent to A&E.
This meant that quite literally there was no facility in the country that would treat her for a mental health condition as long as she was on an NG tube, but she also could not break her reliance on the NG tube without mental health support. Therefore, she was completely stuck in the children’s hospital with no plan in place for her.
We were desperate to get her help at this stage, so we filed a complaint with the HSE, with the psychiatric facility who would not take her back, and with the Ombudsman for Children. We contacted all of our local TDs begging for help. Despite these efforts, there still wasn’t an inpatient facility that would accept my daughter.
At this stage I was so completely frustrated that I went to the media to raise awareness about the issue. Prior to this I did some Googling, and it was clear to me that we were not the only family who has experienced problems getting care for a loved one with an eating disorder.
About a week after the newspaper article came out, my daughter got a place in an inpatient psychiatric facility that previously did not accept her because she was not eating orally. She still was not eating orally when she was transferred there. I will never know if it was down to timing or if the media coverage helped, but I do truly feel it was thanks to the media.
Because the facility she was transferred to did not have NG facilities, and because she was now 16, she ended up in an adult A&E three times for medical stabilisation. It was a terrible experience, but strangely in the end it is what helped, because at that stage she just really wanted to come home. In December 2023, my daughter was finally discharged home after spending 1 year and 1 month in five different hospitals and facilities.
In November 2023, I organised the Mind Everybody campaign and held a protest in Dublin City. If you read this whole story, I’m sure you can see why. My daughter was failed so many times.
- The long wait list.
- The lack of therapy and mental health supports.
- The lack of early training and supports for us as parents to understand what an eating disorder is and how to best help her.
- Treating a mental health issue as a separate medical condition, instead of treating both physical and mental health together.
- The inability of any hospital or facility to meet her needs…except the one facility in the entire country…who chose not to treat her.
- The complete lack of transparency and accountability for her care.
- The lack of a care and treatment plan.
- The lack of support when she was discharged from hospital to home (such as therapy and meal support if required).
- The lack of NG facilities in all psychiatric facilities but one.
- Catchment area restrictions that limit what treatment children are eligible for.
- Barriers to accessing private facilities because of lack of insurance, out-of-pocket expense, or because of NG reliance.
- Not enough beds for the amount of people presenting with eating disorders.
- Not enough staff to create more beds.
- Not enough staff trained specifically in eating disorder care.
All these problems are what led me to do the first protest. I literally did not even think it through clearly. I was so frustrated and didn’t know where to turn for help. I felt like nobody was listening and nobody was helping. Nobody cared. I wanted someone to listen and someone to care.
This was my daughter’s life that was being destroyed. The amount of school that was missed, the social interactions that were missed, the family holidays that were missed. Maybe recovery still would have taken a long time even if she was in a proper facility instead of a children’s hospital, but now I will never know.
When people ask me what reforms I would like to see in eating disorder services, there are so many that it is hard sometimes to even know what to say. The main thing I want is a connected service, with specialised eating disorder staff, in a facility that can treat a sufferer’s mental health condition along with their medical issues, and does not have regional barriers to accessing care. It seems so simple in my head, but I am truly scared that such a service will never exist in Ireland.
Amy is holding a second protest in Dublin for Eating Disorders Awareness Week.
This time I wanted it to be bigger and better, so I am trying to organise protests in different counties. So far the one for Dublin and Limerick are planned, and I would still love for others to get involved. I want anyone nationwide who has been affected in some way by an eating disorder to have a platform to have their voices heard, and to ask for the changes that are so desperately needed.
I had no thoughts or intentions after the first protest to continue, but I realised eventually how important it is. Many people with an eating disorder are still finding their voice. Many don’t want to be identified because they are children, teenagers, men, or simply don’t want to be stigmatised. Carers are exhausted from doing everything in their power, fighting with a broken system, to try and obtain care for their loved ones, and help their loved ones the best they know how, many while still working full-time or part-time, many as single parents with little support, and many with other children to also care for.
I want to be a voice for people who are broken or tired. I was once broken by this. I am still tired. Exhausted. But I repaired myself, and this campaign is the first thing in years that has given me a positive focus. I WANT those suffering from eating disorders to receive better care. I NEED for it to happen, before more families struggle. Sufferers of eating disorders DESERVE to be treated better. And NOW is the time for change.
For more information on the Mind Everybody campaign please visit www.MindEverybody.com
If you are worried about someone close to you regarding their mental health and/or an easting disorder please contact you local GP.
Some extra resources below:
Bodywhys – BodyWhys is a great resource if you are worried about body image or food struggles.
Mental Health Ireland – Mental Health Ireland has a great resource on their website if you are struggling with your mental health.
Pieta House – Pieta House are always there to help you if you are feeling suicidal any time of the year.
Samaritans – You can speak to the Samaritans if you are struggling with your mental health.
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