By David Hennessy
A Leixlip family have launched an appeal to get a fifteen-year-old girl suffering from anorexia into a specialist facility in London. Ana, whose name has been changed to protect her identity, has been battling anorexia for three years. Her mother Kate (also not her real name) says they have been completely let down by the HSE who can do no more for her but also will not refer her to a UK facility which would ease the family’s financial burden. Ireland has no specialist facilities for anorexia and without an HSE referral, the family will have to find the money for the treatment themselves.
Fearing they could lose her, the family have launched a crowdfunding appeal hoping to raise the €25,000 they need to get help for Ana.
Kate told The Irish World: “It’s three years she’s battling this. She wants to get better but she can’t do it on her own. She needs intense psychology and counselling and somebody that has been there and can help her get through it.
“There’s no specific clinic in Ireland for anorexia. During the lockdown, her mental health suffered really badly. There’s just no resources.
“This appeal is only for her to be an outpatient. I could never in a million years afford to put her as an inpatient. I’ll go and stay over there with relatives for however how long I have to stay, a year, two years, whatever. That’s what I have to do.
“I have two more children, one ten-year-old and a 22-year-old at home as well, but we’ll have to separate because we all want the same thing: To get Ana the help she needs and get her back. We lost our child three years ago to anorexia. She needs her life back. She wants her life back.”
Ana was recently discharged from Linn Dara Hospital in Dublin, where she had been for more than seven months straight, despite no improvement.
“They admitted that they couldn’t help her anymore because she was losing weight even though she was getting a weekly nasogastric feeding on top of her meals.
“The hospital lied about her weight. When she was weighed the next day after coming out she was two kilos less. They did everything just to get her out.”
Now Ana is at home, she has to be watched constantly which puts a strain on the family.
“Now she’s at home she just stands and exercises for 14 hours a day. Her weight has dropped two kilos and she’s not even two weeks out of hospital.
“We have to medicate her at 8 o’clock at night in order to get her to sit down and fall asleep at 10 o’clock.
“She’s just come out a hundred times worse than she ever was.”
Kate explains she has been trying to get help for Ana since February last year.
“I brought her to the doctor in February last year. In March she was admitted to Our Lady’s Hospital in Crumlin and they said another twelve hours at home and she would have been dead. That was on the Wednesday.
“On Saturday morning the doctor said they needed to sedate her to get the nasogastric feeding into her. She wouldn’t eat so they said they had to sedate her for 48 hours. The risk was that her heart would stop completely because it was so low as it was. I had to sign the form because I had no other choice. She was going to die if she didn’t get a feed into her.
“She pulled through that and then she spent three weeks in the heart unit because her heart rate was so low and still they were trying to sedate her every night to get some kind of nasogastric feeding into her. She got transferred to CAHMS (Child and Adolescent Mental Health Services) in Linn Dara in April and she was there until September. She got sent home in September and was meant to get an hour of support two days a week but that never happened. It was only an hour a week she got.
“By November she was getting worse. The weight was falling back off her as much as we tried. She was concealing so much food. As much as you watched her eating, she was hiding it up her sleeves, in her pockets, in her shoes. On 27 December she was admitted back in again until 4 August.”
The nasogastric feeding was distressing for Ana and her parents. She would struggle resulting in four or five adults holding her down. This was traumatic for the child but there were also occasions when the procedure would cause nasal and throat damage.
The family has also had the additional stress of a lengthy court battle with the HSE trying to get Ana referred to a facility in the UK. Despite objections, a judge ruled that Ana should return home this month. Kate says this all of this has only added to Ana’s distress.
“I’ve gone through the courts for seven months with the HSE. She needed counselling and psychology and they just wanted to focus on getting her weight up and not actually give her mental help.
“All along we were fighting for a referral for her to go to the UK but they would not give a referral because it would mean them admitting liability, that they failed my child and it would open up a whole lot of doors. Even though I had proof that they had referred numerous people to the UK for treatment I was going through the courts.
“I had the independent doctor who admitted my daughter to Crumlin a year before. He said it was the worst case of anorexia he had ever seen and that after meeting with my daughter that there’s no way that this child is ready to go home. The guardian of court said to the judge, ‘This child won’t survive three months at home’.
“That was on the Thursday and on the Tuesday they discharged her. On the Friday after the court, Ana smashed her head open off the wall from the stress of going home because she didn’t know how she was going to manage.
“She wanted a transfer somewhere else, not a discharge.
“She knows how hard it is on her and her family. She thought the family didn’t know the extent of how bad she had gotten but we did.
“The trauma and the stress that it all put on my daughter. She attempted suicide, she has self-harmed.
“They couldn’t get her weight up there. She wants to get better.”
There is a private facility in Ireland that could take Ana when she turns eighteen. Kate fears this will be three years too late.
“Why should Ana have to suffer for another three years? Who is to say that she will survive three years? We nearly lost her a few times because of attempted suicide and her organs nearly shutting down last year.
“The guardian of court said the child doesn’t have three months at home. If she’s not dead, she’ll be back in the hospital.
“If the HSE had transferred her to the UK, everything would have been covered. She would have gone in as an inpatient.”
The Irish World contacted the HSE for a comment and they said: “The HSE cannot comment on individual cases. Maintaining a client’s confidentiality is not only an ethical requirement for the HSE, it is also a legal requirement as defined in the General Data Protection Regulation (GDPR) along with the Data Protection Acts 1988-2018.
“When a client or family makes personal information public, this does not relieve the HSE of its duty to preserve client confidentiality at all times.”
To donate to the appeal, click here.