AMY HANLEY’S 14-year-old daughter was on the waiting list for the HSE’s Child and Adult Mental Health Service (CAMHS) for a year.
In that time, Arabella’s health deteriorated so much that she had to be hospitalised with the eating disorder anorexia nervosa within the first few months of finally accessing the service.
Anorexia is a complex mental health condition that no one chooses to experience. It is most commonly experienced by young women, but people of any age and gender can be impacted by it.
Bodywhys, Ireland’s leading organisation supporting people affected by eating disorders, explains that although eating disorders can seem to be about “food and weight”, for the people experiencing them, they are primarily related to underlying issues connected to how someone “thinks and feels about themselves”.
Initially, Arabella’s parents were told she could be in hospital for a few days, but Arabella has now spent the majority of the last year in hospitals.
The Skerries teen, who is now 16-years-old, waited for months to get a bed at the Linn Dara inpatient unit in Dublin – where she was treated for three months before being discharged to her home.
Arabella was home for five days before she was admitted back onto a general children’s ward in Temple Street, where she has been since.
Linn Dara is one of the leading inpatient units in Ireland for the treatment of children and adolescents with eating disorders. Arabella’s mum believes that readmission to the unit, and access to the specialist care offered there would help her to recover.
When Amy reflects on the last year, she often wonders about how different things could be if her daughter had got the help she needed sooner.
“By the time she got off the waiting list for CAMHS, anorexia had fully taken hold of her. She wasn’t eating, or drinking, and wasn’t well enough to attend school. We didn’t know what to do, we didn’t know how to help.
“Now that I know how important early intervention is, I wonder where we would be today if she got help straight away. She might not be in hospital, she might be doing transition year,” Amy said.
Initially, Arabella was not admitted to an inpatient unit for children receiving treatment for eating disorders. She was admitted to a general ward at Tallaght children’s hospital, where she mainly relied on being fed through a Nasogastric tube as she was unable to eat.
Her mother Amy claims that in the first month Arabella spent at Tallaght Hospital, she did not receive specialist eating disorder support, and that she and Arabella’s father had to take turns to stay with her every night to ensure she had 24/7 supervision.
“We were shocked that she was going into a general paediatric hospital, we just assumed that because she was so unwell, she would be getting care from specialist staff in a dedicated unit.
“She saw a dietician in the hospital and had a meal plan, but that was really the full extent of the treatment she got for her eating disorder there. She was so weak that she could not go anywhere on foot. It was extremely distressing to see her that way and not feel confident that the care she was receiving would be enough to help her improve,” Amy said.
“Everything was focused on her regaining weight, but there were no mental supports there to help her cope with it, gaining weight can be extremely traumatic for a young person with an eating disorder,” Amy said.
She added that though she believes that a general paediatric hospital is not the right place for her daughter to be, the staff who have worked with Arabella in both Temple Street and Tallaght hospital have been “nothing short of amazing, and as supportive as they could be”.
After a month, Arabella was moved to Linn Dara just before Christmas, where she received three months of specialist eating disorder care as an inpatient.
“The first difference was they were able to stop using the feeding tube altogether. The staff there were highly trained and experienced, and coached her through every meal.
“The unit also facilitates school days, and works with schools to make sure that the kids are studying the same curriculum as their peers in class. We also noticed that our daughter started to find it easier to express herself, and say how she was feeling. Self-expression is really difficult with Anorexia, it’s a condition that leads to people bottling up their emotions,” Amy said.
It was a relief for Amy and Arabella’s dad to know that they didn’t need to personally facilitate round the clock supervision.
“That meant that we could plan visits and do different things on them, and come in somewhat rested. At Christmas time the staff decorated the room and provided chocolates and Christmas crackers – it didn’t feel like we were in hospital at all, it was lovely,” Amy said.
Once Arabella had started consistently showing signs of progress, her parents were informed that she was going to be discharged home, to receive care in the community through CAMHS.
“She had stopped eating before she left. At home, I saw her decline every day. There was no therapy lined up for her, so she was having to cope with this massive change, after getting so used to being in hospital, without real support.”
It was less than a week before Arabella was admitted to Temple Street – as the family were told that it would not be possible for her to be readmitted to Linn Dara despite multiple referrals.
Arabella was discharged from Temple Street in June.
“She was sent home on a trial basis, and had multiple check up appointments in Temple Street so they could monitor her progress. CAMHS was trying to organise occupational therapy for her as well while she was home, but the therapist wasn’t available, so it didn’t happen,” Amy said.
Arabella was readmitted to Temple Street again after two weeks at home, where she now remains four months later.
“We had planned for her to go straight back to school, but she only got to go in for half a day before she was back in hospital – that was particularly heartbreaking,” Amy said.
The mum-of-two said that Arabella’s condition has now deteriorated again, and that she believes her daughter needs specialist inpatient care on an urgent basis.
“She has check ups with a hospital psychologist, and they do have an occupational therapist working with her, but in an inpatient unit she would be offered really specialist supports, which we believe she needs.
“The hospital isn’t able to provide the meal coaching that Arabella received got at Linn Dara, so myself and her father were present with her for as many meals as we could be, since Linn Dara had trained us in meal coaching. While this occasionally helped, we were both working full-time and couldn’t dedicate as much time to meal coaching as we would have liked.
Arabella is now mainly “reliant on a feeding tube again, and is not eating orally,” Amy explained.
She said that she has lobbied TDs in her area, including the Housing Minister Darragh O’Brien, to try and get help in securing an inpatient bed for her daughter.
‘The hospital knows that my daughter needs inpatient care, and she is not well enough to come home, and so do CAMHS – they have referred her to wherever they can. We were told she cannot go back to Linn Dara initially because it is not in their catchment area, and secondly because it wouldn’t be “clinically appropriate”. We do not know why,” Amy said.
St Joseph’s inpatient unit in Fairview, Co Dublin, has offered Arabella a bed – but the offer is conditional, and depends on her being able to eat orally for five days in a row, as the unit does not treat patients who are dependent on Nasogastric tubes.
One of the main issues the family is facing is the lack of specialist inpatient care facilities in Ireland that provide nasogastric tube feeding.
“As far as I am aware, the only facilities that will take patients who use a nasogastric tube are Linn Dara and the unit in Galway, which is far away from us. If Arabella cannot get a bed in either of these facilities, there is nowhere she can get specialised psychiatric help, which is what she needs to no longer be reliant on the tube, so we are caught in this trap,” Amy explained.
She added that without any plan being in place for her daughter to get specialised help in the near future, she added that she feels “worried, and unable to help my daughter, which is not how any parent should feel”.
Amy said that beyond wanting to see her daughter get the care she needs, she wants to see changes in the way eating disorder services in Ireland are operating at present.
“The HSE’s eating disorder services model of care document acknowledges that early intervention is best for children with eating disorders, but that is still not happening. The service also isn’t collecting data on the national number of referrals, assessments, treatments offered, or waiting times related to eating disorders. So we don’t actually know what is most effective, or where the problems are – that needs to change.
“Action needs to be taken so that all psychiatric inpatient units can facilitate nasogastric feeding, so that children with eating disorders are not stuck in general hospitals, with limited access to specialised care,” she added.
Amy has made an official complaint to the HSE, to Linn Dara (as she claims it has not provided a formal refusal letter), and to the Children’s Ombudsman.
“I met with an ombudsman investigator a month ago, and I felt like he was the first person to actually listen to me in a long time, and that gave me some hope. He told me he would be in touch the next week, but I have not heard from him since. I’ve emailed, and I’ve called. No one is helping us, so who can I turn to?” Amy said.
“Arabella needs specialist, long-term inpatient care. We want her to be able to come home permanently, and to be helped to manager her condition with our support,” Amy said.
The HSE issued a statement to The Journal in which it said: “As of September 2023, there was one person on the waiting list for an in-patient bed with a diagnosis of an eating disorder for the Galway Unit. Not all referrals to inpatient CAMHS will be accepted.”
It continued on to state that referrals are reviewed, risk assessed and triaged. It said that this process can include discussions and meetings about the “current progress” of a young person if they are “in a paediatric unit as an example.”
A spokesperson said that these discussions also focus on “what treatment goals need to be attained before transfer to CAMHS is initiated.”
“Referral is then accepted or not. If accepted, the person is placed on a waiting list and admitted based on clinical need/priority and available bed. If not accepted, the referrer is notified and sign-posted to more appropriate route/service,” the HSE spokesperson added.
The HSE noted that while a “small number of people benefit from more intensive treatment through day programmes or inpatient care”, the “most effective” treatment setting for eating disorders is “in the community”.
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