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Why I organised a protest

Writer's picture: Amy HanleyAmy Hanley

Updated: Nov 5, 2023

I thought it only appropriate that my first blog post be about what led me to organise a protest.


Everyone has a limit, and I recently reached mine.


When we first suspected my daughter had an eating disorder, we went to our GP who referred us to CAMHS. The wait list was so long that it took her over a year for her initial appointment. In the span of the year, we'd been to the GP several times asking for new referrals, we checked with CAMHS many times to find out where she was on the wait list, and we organised private therapy for her.


Initially we were concerned but her disorder had not fully taken hold. Over the year we watched her progressively get worse, and by the time they had a place for her in CAMHS, she was nearly at the point of hospitalisation.


This leads to issue one: the importance of early intervention.


As parents we were a little clueless how to help someone with anorexia. We had never encountered anything like it before, and didn't know what we were up against. With a long wait for CAMHS, we really could have used some support in the meantime. Meal coaching would have been extremely helpful for us at the time but it wasn't available. We did attend a PiLaR course through Bodywhys which was helpful, but it just wasn't enough.


This leads to issue two: the importance of early supports and information for parents and carers.


When first seen by CAMHS, we immediately asked for therapy. We were told because anorexia patients are malnourished, it is difficult for them to benefit from therapy, and thus it is not offered until the patient is weight restored. We felt if she had immediately received therapy, it would have given her a safe outlet to discuss the issues she was having. Whether therapy was effective or not, I cannot state how important it is for a child going through such difficulties to have someone listen to them, and help them deal with the weight restoration process, which is extremely traumatising for someone with an eating disorder.


This leads to issue three: therapy is needed every step of the way.


While she was then on the wait list for an inpatient unit, more urgent care was needed, so she was admitted to a children's hospital for a month, where she was mostly reliant on an NG (nasogastric) tube for feeding. While the hospital could help maintain her physical care, they cannot offer her psychiatric help.


This leads to issue four: a lack of connection in services for eating disorder patients.


After a month in a children's hospital, she secured a place in an inpatient unit called Linn Dara, which offers both psychiatric care and NG feeding, if required. She was there for three months before being discharged home. She really needed therapy her first week home to help with the transition between inpatient and home, as it was a big change. With no immediate possibility of therapy, she was only home less than a week before she was readmitted to a children's hospital.


This leads to issue five: more community supports are needed for the transition between hospitals and home.


After being admitted to the children's hospital, we wrongly assumed she could go straight back to Linn Dara, since she had only been discharged a week previously. This is when we encountered one of our most serious and frustrating problems: They would not take her back, because we didn't live in the catchment area, and the hospital she was in was not in their catchment area. Prior to this, we had no idea that they operated on a catchment basis.


This leads to issue six: the need for more facilities to treat eating disorders, or the removing of catchment areas so everyone in the country can receive treatment.


After three months in the children's hospital, she was then discharged home as no inpatient unit would accept her. She could not access a private facility, because my insurance treated it as a pre-existing condition. The public inpatient facilities would not accept her because if she required NG feeding, she would need to go back to the children's hospital. Linn Dara is only one of two hospitals in the country that can facilitate NG feeding and psychiatric care, but somehow she was no longer eligible to go there, since we didn't live in the correct post code. This knowledge was extremely frustrating, because I realised if it was this difficult for us to access care in Dublin, I could not even imagine what it would be like accessing care outside of urban areas.


My anger started to rise at this point, as it felt discriminatory. She could not receive treatment because we don't live in a certain area, but to me medical and psychiatric treatment is a human right, and should not be dictated by the area you happen to live in, especially when the services are not even available in all areas.


So after being home for two weeks, my daughter still was not ready, still received no therapy through CAMHS, and ended up back in this children's hospital. This time for four months, and this time fully reliant on the NG tube.


Linn Dara still would not accept her back because we weren't in the catchment, even after multiple referrals from the hospital and CAMHS. The other public inpatient facilities would not accept her because she was not eating orally. She was referred to Galway, the only other eating disorder facility in the country that could facilitate NG feeding if needed, but as far as I am aware, we never received a denial or acceptance from them. We changed our insurance, which was then accepted by a private inpatient unit, but we encountered the same issue- they would not accept her because of her reliance on the NG tube. She was not well enough to come home.


At this stage we felt completely helpless, so we submitted a complaint to Linn Dara, the HSE, the Ombudsman for Children, and our local TDs. Several of the local TDs liaised with HSE to try to help. Previously, the reason we were given for her denial into Linn Dara was because of catchment, but the response the HSE sent to the local TDs was that CAMHS, Linn Dara, and the children's hospital all agreed that it wasn't "clinically appropriate" for her to go there.


This was simply untrue, because both teams at CAMHS and the children's hospital referred her to Linn Dara multiple times, so we questioned why it wasn't "clinically appropriate," who made this decision, and what her actual care plan was, but we did not receive a response. We requested a meeting with the HSE but did not receive a response.


Several weeks later, the TDs sent an update from the HSE, stating that my daughter had a bed in an inpatient unit and was just waiting for medical stabilisation to be transferred. We asked the children's hospital about this, but were told no, she needs to be eating orally for five days before they will accept her, because of the risk of going back to a general hospital if NG facilities were required, and at this stage she was still fully reliant on the NG tube.


This letter from the HSE was the last straw for me. The lack of care, the lack of responsibility, the lack of a plan, and misleading or inaccurate information we were getting from HSE caused me to hit my limit. My daughter went through years of difficulty and suffering, as a family we went through years of difficulty and suffering. We felt like we were begging for help, begging to be listened to, and nobody was listening.


It was at this stage I decided to turn to the media, talk to an attorney, and organise a protest. Obtaining care for an eating disorder should not be so slow and painful, and quite frankly at times, non-existent. Less than a week after the first article was published, my daughter is continuing her care in an inpatient facility, while also being transferred to an adult hospital back and forth for medical treatment as needed.


This has led me all to believe in the importance of having several facilities in the country that are specifically for eating disorder treatment, since it is a highly complex disorder that effects both body and mind. The importance of having therapy, meal supports, and family supports along with the medical supports and stabilisation cannot be understated.


At bare minimum, there should be a connection between hospitals, inpatient facilities, and community care. There need to be eating disorder specialists in hospitals, and NG facilities available in all psychiatric facilities. Waitlists need to be reduced, early interventions need to be made possible. Catchment areas need to be eliminated or more facilities, staff, beds, and funding need to be made available.


Our journey as a family is still continuing. We are still struggling, but we love each other, support each other, and we are all fighting for the care that not only my daughter deserves, but that all people with eating disorders deserve.


I am exhausted and the past years have taken their toll, but I want us to be the example of what not to do. Other families have been through this, we have been through this. Please let it end with us.


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