Note: This article contains details of eating disorders and suicidal ideation that some might find distressing.
A WOMAN WHOSE description of life with an eating disorder has gone viral is appealing to the HSE for immediate access to in-patient treatment.
Speaking to The Journal, the woman – who wishes to remain anonymous – said she was bolstered by the huge support her story received when it was shared with her permission on Twitter.
The tweet details the depth of the woman’s current situation with binge-eating, anorexia and purging, and the impact it has had on her mental health. She has been dealing with the disorders for over a decade, during which she has engaged with the public health service – but at this point she feels that in-patient treatment is her only option.
The young woman said she has been told the cost of private in-patient treatment starts at around €60,000, which she cannot afford. In order to get a public bed at an in-patient treatment centre, she needs to be referred by the HSE – but she detailed to The Journal the many barriers she has faced asking for this.
She does not at this point want to launch a GoFundMe campaign to raise the funds, but said she might be forced to if the HSE does not intervene.
She said that allowing her story to be published on Twitter was “terrifying”, but has had a positive impact.
That kind of support in the last week has turned things around 180. I just feel a bit like myself. I have a bit of a fire in the belly.
She said she did have reservations about the Twitter post triggering other people with eating disorders, but also believed people can be “quite flippant” about the conditions.
“They are so common, people think they are not as big a deal – they are a really big deal. The reality is that what I wrote is where they lead to if they’re not treated.”
Her family and friends have suggested the GoFundMe campaign to raise the necessary funds. “I don’t know would I mentally be able to do that,” she said.
“It would make me really vulnerable, everybody would know the situation. I shouldn’t have to do it – crowdfund for my life. It is a last resort.
“I would much rather first that the HSE supports me in what I’m asking.”
“My hope is that through TDs and media, that the pressure will be on and they will offer me what I’ve been begging for so long for, and which has been given to other people in my position who aren’t rich and don’t have private health insurance.”
Her story
“I’ve had issues with food all my life, in childhood I didn’t really realise they were issues but looking back they absolutely were,” the young woman explained.
This continued throughout her adolescence and she “started to develop really unhealthy patterns of behaviour around food”. The focus was not on losing weight, but due to the fact she was “always very dissatisfied with myself”, she said.
“I was a very outgoing, very sociable child and adolescent and too good at putting on a front so that nobody knew really the level of self-loathing I had.”
When she started college, she began to binge-eat, which then led to crash dieting and over-exercising. This in turn led bulimia, purging her food and using laxatives.
“Never in a million years when I started that did I think it would morph into what it is now,” she said of purging.
This then developed into her current situation, where she has been dealing with severe disordered eating for over 12 years. It was not easy for her to speak to others about what she was experiencing throughout this time.
“When I started with the purging I kept it secret for a few months and then I eventually told a close friend. I didn’t really think it was a serious issue, I knew I shouldn’t be doing it but I didn’t want to stop.”
He friend encouraged her to go to an informal support group, and this support group in turn encouraged her to speak to her family. At the time, her parents had private health insurance, and through that she was able to access a private psychiatrist and cognitive behavioural therapy (CBT). This did not work for her, and neither did medication.
“I don’t want to say CBT isn’t effective – it has a huge evidence base behind it and has been effective for many people, but for me it didn’t work,” she said.
The disordered eating continued and at the age of 20 she was referred to a GP (one of two routes to accessing mental health services – the other route is by attending an emergency department, which the woman has also done several times).
She was referred to mental health services, and to a psychiatrist. It usually takes at least a few months to see a psychiatrist due to how busy mental health services are in Ireland, said the woman.
‘It’s extremely difficult’
After her first appointment, she was then put on a waiting list for outpatient therapy which usually involves linking in with a psychologist once a week.
“I’ve been through that cycle in the last 10 years I would say maybe seven or eight times,” she said. “It varies in what my experience is in terms of how long I hang on. I would always get to the point where they are either referring me to the psychologist or I wait the waiting period and I link in with a psychologist.”
When she has stayed within the system, she has engaged with the weekly therapy they provide. “It’s extremely difficult to engage once a week in therapy when you’re in that kind of a hurricane,” she said. “I would often be in the waiting room to see a psychologist or psychiatrist and I would be eating in the waiting room and getting sick in the toilet.”
The psychologist would generally encourage her to stick to a food plan and keep food diaries, but she said this was incredibly difficult for her.
“When your body and mind are so exhausted and you feel like you have nothing left, no energy or willpower, it is very difficult to monitor and change your own behaviours, to try to fight urges on your own that are so strong they overpower you,” she explained.
“What tended to happen is I would end up disengaging – it would feel like putting a plaster on a broken leg,” she said. “If you presented to a professional with a serious injury and all they can do is give you a plaster, why would you try?”
When I was crying out for help and couldn’t get it, I would end up dropping out of the system before I reached the top of the waiting list.
On one occasion, she attended an appointment with the consulting psychiatrist and told the woman that she hadn’t eaten in a number of days.
“But because they are so under resourced they’re working straight through the day… she started eating her lunch in front of me. I just sat there and cried. I didn’t know what to say. Another time, the psychiatrist asked me to try give myself therapy because the waiting list to see a psychologist was so long.”
“Every time I have one of these negative experiences, another layer of trust and faith in the service gets stripped away.”
She said she has begged multiple consultants for more than one hour of psychological help a week. She has told them that she believes in-patient treatment is her best chance.. “Every single one said we don’t offer those services, all we offer is this outpatient treatment.”
She rang a private residential treatment centre who told her that there are some public beds available in facilities which require being referred by the HSE.
“I was distraught. I couldn’t believe I had gotten this bad and anytime I asked for help nobody had ever said there is HSE funding for this.”
At that point she wasn’t engaged with mental health services as she had “given up hope completely”, but decided to give it one more go. She attended a private day centre who gave her free sessions to help her with linking back in with the public service.
‘Your trust is eroded’
After a few months on the waiting list, she met another new consultant psychiatrist.
“At the first appointment I told him how bad the eating disorder is – I said, this is what I’m doing, these are the repercussions. I said I know there are public beds in private facilities, I really need you to advocate for me to get one, or I will die.”
“He said ‘I don’t know anything about this’. This is another example of how your trust in the service becomes eroded,” she said. “As the head of the mental health service in my catchment area, how did he not know about this? I explained the process and he said he would look into it.”
On her return appointment he told her that he would not be making an appointment on her behalf for a bed, “because I had been in and out of services for so long, he said it showed a lack of motivation on my part”.
“I was inconsolable in the office with him – I ended up having to walk out.”
“In the run up to the appointment, there were so many times I was [engaging in disordered eating behaviour], and what would keep me going was the thought that I just need to get to this consultant and he would help me. And then to go to his office and have him say ‘you’re not worth applying for’… It felt like a judgement on me, on my worth. It was horrendous.”
She returned for another appointment with a friend who advocated on her behalf.
“[The consultant] agreed to write the letter to the HSE for in-patient funding but said in front of me, ‘I’m going to have to tell them you have a history of disengaging and am going to have to tell them this is your pattern.”
“I was trying to explain to him – there are studies that show that patients who disengage from services have the highest risk of mortality. More often than not, it isn’t a lack of motivation on the patient’s part – we are asking for help and turning up to consultations after spending months on waiting lists. It’s a problem with the service.
“I’m not disengaging because I’m not motivated.
“I don’t want to live this way. I’m disengaging because the service isn’t equipped to meet me where I’m at.”
‘In-patient is a last resort’
The woman contacted a local TD who spoke to the CMO of the HSE in her region and confirmed that no application for in-patient treatment had been made on her behalf. She was then linked in with an occupational therapist, who again suggested food plans and food diaries.
“When you’re in that deep and it’s that severe and I physically can’t stop… when someone is sitting here saying ‘can you try to write out a food plan and keep a food diary every day?’, it feels impossible,” said the woman.
Due to her eating disorder, it is “impossible to keep track of” what she is eating. “It is too chaotic. I think in-patient is my last resort – you are in a controlled environment. I don’t know whether it will help, I know there are cases where people come out and relapse. But it’s the only thing I haven’t tried.”
In the past year she moved county, and linked in with mental health services there. However over the winter period she attended an emergency department due to very strong suicidal ideation.
She was then referred to a specialist eating disorder team, and given an urgent appointment in November – for January.
“I attended that appointment and told them the whole situation. I went through the whole thing and said to them: look, the only thing that might save me at this point is inpatient treatment and they said ‘no, you’ve never been with us, we are a specialist eating disorder team, we know we are under resourced but we still believe outpatient is a better option. We want to keep people in the community.’ I strongly believe in community care – it is optimal in early intervention, but when things are so out of control and you’re trying to end your life, waiting months and months on a waiting list for an hour a week of therapy makes me feel hopeless.”
She is now on a waiting list for outpatient therapy.
“Because there’s been such a huge surge of people presenting with eating disorders since the pandemic hit, I don’t know where I am on that waiting list.”
Unfortunately her mood plummeted during the most recent lockdown and again she experienced strong suicidal ideation.
When she contacted them about this, she was told “we are a specialist eating disorder unit, we don’t deal with mood issues and suicidal ideation”, and she was referred to a team in another hospital.
“I am one person,” she said. “There should be an emphasis on holistic care.”
She is now in contact with the community mental health team. “They phone me weekly to check how I am. It got so bad a few weeks ago that I told one of them on the phone that I had a plan to end my life, I had nothing in me anymore. It wasn’t a cry for help. With the headspace I was in I didn’t care actually who I told, I was that far gone. I was on the phone to him for about 10/15 minutes talking about how I was going to end my life. He said ‘okay so, I’ll give you a call in a few days to check in again’.”
She then attempted to take her own life, and was hospitalised for a number of days to be treated physically. While she was walking out of the hospital, she said a healthcare worker made insensitive comments, such as “this is like the walk of shame for you” and “you really need to sort yourself out”.
“It was probably the lowest point of my life,” she said.
Now she has moved in with family, but continues to appeal with the HSE for access to in-patient treatment.
‘I don’t want to crowdfund for my life’
She pointed out that former reality star Nikki Grahame, who died recently having suffered an eating disorder, also had to fundraise for money for treatment in the UK.
“It costs at least 60k for in-patient treatment. Unless you have that or private health insurance you are at the mercy of the public service,” she said of Ireland.
“I don’t want to crowdsource for my life,” she said. “I just haven’t found a psychiatrist yet who is on the same page as me, who wants to advocate for me. When I’ve engaged in outpatient therapy in the past, I would be with a therapist for an hour a week, talking things through – but then I’m on my own for the other 6 days and 23 hours, trying to control it myself.”
She said she is “not under any illusions that in-patient treatment is the answer to all my problems, but I genuinely think with all my heart it’s my last resort, my last chance”.
She has been told that the evidence base doesn’t support in-patient treatment. However, she is a trained researcher. “I’ve been looking at the evidence base and there is no consensus yet. The studies generally come to the same conclusion – there is not enough evidence to confirm which type of treatment is most appropriate for different groups of patients.”
Previously, a consultant told her that they only admit people who are severely anorexic and under a specific BMI. “When you say that to someone like me with bulimia and anorexia, the only thing I think is that I need to get a BMI of [that number],” she said.
She is calling for a review of eating disorder services, and “a review of this idea that residential patient care should be abolished and out-patient is the only way forward”.
“I think there should be hybrid resources,” she said. “What about day centres? This way people can stay in the community, but spend every day in a safe environment getting the intensive care they need”.
There needs to be more emphasis on patient-centred care and that the patient has a voice. Yes that consultant has expertise, they have spent a long time building up skills and experience – but at the end of the day, I am an expert on what I know I will respond to.
Eating disorder funding
It emerged earlier this year that the entire amount of 2020′s development funding for eating disorder services was used to cover other areas of mental health provision.
Eating disorder funding was originally allocated to the development of new eating disorder services within the HSE, yet for the last three years all or almost all of the money was diverted to other services, Noteworthy reported.
In 2018, €1.5m was allocated for the development of eating disorder services across Ireland. However, according to the HSE, just €137,000 was spent.
The young woman said the underfunding gives out the message that “‘eating disorders aren’t important’ – but anorexia has the highest mortality of mental health conditions”.
For now, she will continue to appeal to the HSE to enable her to access in-patient treatment.
“I don’t want to come across like I’m criticising the service. I want to get across that after years of those experiences it just erodes your trust and it erodes your belief in the system.”
‘Outrageous and inexcusable’
The young woman has been in touch with TD Holly Cairns, who told The Journal:
It is very worrying that €1.6 million allocated in the 2019 budget and none was spent. Eating disorders, which disproportionately present among young women, are some of the psychiatric conditions most associated with mortality.
Back in February the Minister assured me the money would be spent this year; however this case indicates that there is still a significant gap between government’s intentions and on the ground healthcare services for people who need them.
It is outrageous and inexcusable that people can’t get the support they need.
When contacted, the HSE said
The HSE cannot comment on individual cases.
It said that its National Clinical Programme for Eating Disorders aims to establish an Eating Disorder network (8 adult teams and 8 CAMHS [Child and Adult Mental Health Services] teams) in accordance with its published Model of Care (2018).
There are currently three teams in operation, 2 CAMHS teams serving Cork Kerry Community Healthcare and Community Healthcare Dublin South, Kildare and West Wicklow and an adult team in Community Healthcare East. “These multidisciplinary teams provide specialist eating disorder assessment and treatment in the community,” said the HSE.
Funding has been made available in 2021 to progress the recruitment of three additional ED teams in Community Healthcare West CAMHS, Cork Kerry Community Healthcare, adult; Community Healthcare Organisation Dublin north city and count, adult.
A progress update on the National Clinical Programme (NCP) for Eating Disorders can be found here. An update on NCP for Eating Disorders 2020 growth can be found here.
Anyone who is concerned about an eating disorder should discuss it with their GP. They can offer medical assessment, support and information on treatment options.
Adults with eating disorders can access treatment from local community mental health teams. There are currently 112 adult community mental health teams nationwide. The HSE said that 90% of new /re-referred adults are offered an appointment within 12 weeks.
“Adults who have an eating disorder diagnosis and require inpatient care can be referred to any of the HSE’s acute inpatient mental health-approved centres around the country,” it said.
“Adults presenting with an eating disorder can also be treated in an acute hospital if their physical health needs require this. There are also 3 dedicated beds in St Vincent’s hospital ring-fenced for adults with eating disorders in Community Healthcare East.”
Children and adolescents with eating disorders can access treatment through CAMHS community teams. There are currently 72 CAMHS teams nationwide.
Children and adolescents with an eating disorder diagnosis who require inpatient treatment can be referred to one of the CAMHS inpatient approved centres. Referrals are reviewed individually to determine the likely clinical benefits of admission as well as possible other treatment alternatives.
“The HSE also funds patients in private facilities. Decisions are made based on individual clinical need (as assessed by the local mental health team) and the prioritisation of available funding.”
Since 2016, €5.7 million has been made available for Eating Disorder posts through programme for government funding. Of that, €1.77 million has been invested to date in Eating Disorder Specialist Posts. The balance of €3.94 million for specialist eating disorder posts remains fully available to invest in specialist ED posts in 2021.
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