Patients with eating disorder crying out for proper services

Eating disorders have the highest mortality rate of any mental health condition in Ireland. Despite this, treatment for eating disorders has been historically neglected by the State and there is a distinct lack of awareness amongst the general public about eating disorders other than conditions like anorexia and bulimia.

An eating disorder is a mental health condition causing a significant or severe disruption to a person’s relationship with food and their body. It affects a person’s behaviour, thoughts and emotions, and can also impact them physically, for example, causing weight loss or loss of periods in females. While the symptoms of a number of eating disorders are similar, experiences are individual.

The HSE Clinical Programme for Eating Disorders (NCPED) published its Model of Care policy document in January 2018, with a five year plan to improve eating disorder services. It has not been updated since.

The plan highlighted the prevalence of eating disorders in Ireland, revealing an estimated 188,895 people nationally are affected by eating disorders, with up to 1,800 new cases emerging every year.

The Model of Care had an implementation timeline of five years and a plan to create and recruit 16 specialist eating disorder teams at community level by the end of 2023: eight for children and adolescents and eight for adults. That target has been missed.

To date, 11 out of 16 eating disorder teams are in place and taking referrals – five for children and adolescents, and six for adults. This means there are black spots across the country, particularly in the midwest and the midlands.

Recruitment is underway for a 12th team in the HSE regional health area of south Dublin/Kildare/Wicklow. Funding has been approved for two more after that (for the regional health areas of HSE Dublin and Midlands, HSE Dublin and North East and HSE Midwest). There is no exact date for the establishment of these teams.

Speaking in the Dáil in February, Mary Butler, Minister of State at the Department of Health with responsibility for mental health, said: “It takes about a year and a half to stand up a multidisciplinary team.” This suggests that it will be into 2026 before 14 out of the 16 teams are established – three years after the target date, with two more teams still to be determined.

Lack of beds

These specialist teams provide eating disorder care in the community but high-risk patients need to be treated within a specialist in-patient service. There are four CAMHS (Child and Adolescent Mental Health Services) in-patient units nationwide where young people under 18 can access an eating disorder bed. They are all located in or near cities and include: St Joseph’s Approved Centre, Dublin, Linn Dara Approved Centre, Dublin, Eist Linn Approved Centre, Cork and Merlin Park Approved Centre, Galway. The units contain 20 eating disorder beds and the latter three units also provide NG (nasogastric) feeding [when a thin tube is inserted through the nose and into the stomach to deliver nutrition directly to the patient].

If you are an adult with an eating disorder, the situation is more dire. There are only three public beds available for the adult population of the Republic of Ireland. These are all located in St Vincent’s University Hospital, Dublin. If an adult patient with an eating disorder does not live in the catchment area (which is the majority of the population), they are normally referred to a general psychiatric unit and likely do not receive specialised care.

Under the Model of Care 2018, 20 new in-patient beds for adults were due by 2023. Still no funding has been provided.

Commenting on the variation in services nationwide, BodyWhys, the eating disorder association in Ireland said: “It is devastating and frustrating in the extreme for those who do not have access to eating disorder services, and one of the aims of the NCPED, when the Model of Care was launched, was to address the historical problem of a ‘post-code lottery’ of eating disorder services in the country.”

If you don’t have connections, you don’t have health insurance, you don’t have money, it’s very hard to get where you need to go

Let down

Ciara Greene (36) has suffered with anorexia and bulimia since she was a child. Speaking from University Hospital Limerick where she is currently receiving treatment for medical complications caused by years of malnutrition, she tells Irish Country Living she feels she has been “let down by the system”.

Ciara started restricting food at the age of eight but, despite multiple GP and hospital visits, her parents struggled to access treatment for her as a child. She was diagnosed with an eating disorder at 12-years-old. “All the doctors were saying: it’s a phase she’s going through, she’ll grow out of it, and just keep an eye on it,” says Ciara.

Ciara lives in Ballysheedy, Co Limerick, a county with no specialist eating disorder services.

When she collapsed from exhaustion in her late teens she was sent to the Acute Psychiatric Unit 5B in Limerick, the only facility available to her.

Ciara was seen by a general psychiatrist who gave her medication to increase her hunger levels but she did not receive specialised treatment. “I wasn’t getting therapy or dietetics,” she says.

She was discharged but re-admitted after collapsing a second time. This became a recurrent pattern through her teenage years; Ciara counts nine different admissions during this time. “I was going into the system, then going back out, and then going back in,” she says.

Ciara describes being “too afraid” to put on weight. “I knew once my weight went up, I would be discharged. And discharged to what? My family didn’t have private health insurance.

“If you don’t have connections, you don’t have health insurance, you don’t have money, it’s very hard to get where you need to go.”

It was not until Ciara had a heart attack at 19 that she received funding from the HSE to get private treatment at St Patrick’s Mental Health Services in Dublin.

“That just proved my point all along that I have to nearly die until they said ‘ok, you’re sick enough to get treatment’.

“It’s a constant fight, it’s still a struggle to this day. You have to lose your mind before you get into any of these treatment centres.”

Ciara was caught in a cycle of relapse and remission for years, but is now on the slow road to recovery (her last admission to a private treatment centre was over one year ago). She repeatedly credits her family with huge support over the years, especially her father who took time off work to look after her.

Ciara still receives treatment for the medical complications caused by years of food restriction and disordered eating. “I have osteoporosis and I’ve broken my femur. I’ve lost all my teeth from purging [forced vomiting after eating].

“I’m wearing dentures at 36. My kidneys don’t work properly. I have pancreatitis. My whole body has been kind of eroded.

“If I got the right help back when I was a child, I would not be in this place now. My life could be totally different. I could have kids, I could be working full-time.

“I would do anything to fully recover, and I really believe full recovery is out there, but it’s very hard to do it on your own.”

Ciara’s interaction with eating disorder services predates the 2018 Model of Care, but her experience underscores a persistent issue: the challenges that patients and their families face in accessing timely and specialist care.

Irish Country Living also spoke to a mother, Olive*, living in Co Clare whose daughter Louise* had anorexia. Louise’s story has many parallels with Ciara’s: both live in the midwest with no eating disorder services and both did not get a GP diagnosis on their first visit.

Olive had to go to the GP repeatedly with Louise (then 16) in 2019 and 2020. Eventually they told Olive that she’d be waiting two years for Louise to be seen by CAMHS in the public sector, and advised that she try to find a therapist and dietitian privately – which could still be a considerable wait.

“There are no services is what the GP said,” Olive recalls. “I felt angry with my doctor who was sending me home with a child the weight of a 10-year-old, fading before my eyes and her uniform hanging off her.

“I felt like we’d been put into a currach into the Atlantic with no oars. It was literally sink or swim. The three to four years that followed were a daily series of ups and downs, watching, waiting, being on high alert, negotiating.

“The lack of services only reinforced my daughter’s feelings that she wasn’t worth fighting for. This eating disorder wasn’t a significant enough issue to receive treatment.”

After waiting one year for a private referral, Louise was seen by St Patrick’s Mental Health Services in Dublin and provided with an online in-patient service where different clinicians [a psychiatrist, an occupational therapist, a lead clinical nurse and a dietician] checked in with her four or five times a day.

The lack of services only reinforced my daughter’s feelings that she wasn’t worth fighting for

It was all online because COVID-19 restrictions were still in place and the treatment cost €9,500. It was covered by the family’s private health insurance.

Louise did not engage well with the online service but what really helped her recovery was the support from the medical centre in UCC, where she was studying. “The team were so compassionate and understanding and they were clearly experts in the treatment of eating disorders,” says Olive. Now entering her third year of college, Louise is “leading a very fulfilled life” according to her mother.

“It might seem like our journey was an easy one as we managed to avoid in-patient hospital, largely because of Covid, but I was on constant alert all the time. We seemed to be the only ones who cared about Louise’s welfare.”

New hubs

For the first time, Clare and Limerick will get child and adolescent eating disorder services under Budget 2025. Funding was also announced for an adult eating specialist disorder team covering counties in the midlands that, to date, have not been served by an eating disorder team. These include: Louth, Meath, Longford, Westmeath, Laois and Offaly. The Department of Health told Irish Country Living that Minister Mary Butler “has stated her intention to fund the final two teams next year as part of the annual Budget, subject to funding being available.”

Mothers like Olive welcome the move to set up a child and adolescent team in the region, but they stress the continuity of services is important. “We’re not aware of any plans for an adult eating disorder hub in the midwest. In Ireland the transition from child to adult services is almost non-existent,” she says. “Most adolescents end up aging out of the CAMHS system, only to discover as an adult that there are no specialist services for them.”

Another concern is that some established hubs lack full multi-disciplinary teams and are missing a number of key roles. For example, the HSE revealed that there is currently no senior dietitian in either the children or adult mental health service units in the south west regional health area, in a response to a parliamentary question from Liam Quaide, Social Democrat TD from east Cork in February.

“Not having a dietitian on an eating disorder unit is like not having a cardiologist on a cardiology unit,” says Olive.

In response to a question from Irish Country Living on what is being done to improve retention and recruitment within HSE eating disorder teams, the Department of Health said that the NCPED “includes an extensive training and education programme for all clinicians”.

The Department of Health also said that “the area of training and language used by clinicians around eating disorders has been raised with the HSE, and it is acknowledged that there is much more work to be done in this area.”

Upcoming review

The Model of Care 2018 was never fully implemented and, although it recommended a proper review process after three years, Minister Butler only recently asked the HSE to do a full review, which will be carried out in two phases.

“The first phase, which is currently underway is a review of adult bed capacity for specialist eating disorders beds [of which there are three]. This includes a review of data on bed usage in HSE acute hospitals, HSE approved centres, private placements and treatment abroad.” The recommendations for the future plans regarding number and locations of adult eating disorder beds will be provided to Minister Butler by the end of June.

The Department of Health said the second phase of the review will evaluate the eating disorder teams and service levels trends since 2018. “The outcomes of this review will inform the eating disorder teams staffing requirements into the future.”

It is Irish Country Living’s intent to follow these proposed developments closely.

*Names have been changed to protect the privacy of individuals

Next week Irish Country Living talks to families about the costs of caring for a family member with an eating disorder.