Emer McLysaght: Ireland’s eating disorder treatment is a national disgrace, and I should know

Last week I donated to a Go Fund Me appeal following a plea from a young Cork woman desperate for treatment for her eating disorder. She needed €60,000 to afford treatment in a private facility in Dublin. Despite a suicide attempt and years of anorexia and bulimia, she has never been admitted to one of the three dedicated public adult eating disorder beds in St Vincent’s hospital in Dublin. In fact, she couldn’t ever qualify for one of those three beds because she doesn’t live in the catchment area. She has never qualified for private inpatient treatment funded by the HSE. She has been told it just doesn’t do that, or that it doesn’t do it anymore.

(In a statement to me the HSE said that it does currently fund patients in private facilities and that decisions are made based on individual clinical need as assessed by the local health team and the prioritisation of available funding.)

In late 2019, I was granted that almost mythical HSE funding to take a bed in a private psychiatric hospital for eating disorder treatment. I had presented, very distressed, to a GP earlier that year and was referred to the local mental health team. After a few months on a waiting list, the team assessed me and I was told I met the criteria for further specialised and very expensive examination at a private psychiatric hospital.

Part of the guilt and shame that comes with an eating disorder means I didn't and still don't believe I was sick enough to deserve the treatment

In October 2019, I was told that my case was severe, and I would need to be admitted. There was a problem though: I had health insurance but my basic policy wouldn’t cover any of it and the cost was too prohibitive to try to pay for it myself. I know now that there must have been significant advocacy on my behalf to the HSE, for which I am eternally grateful. In December, I received news that the HSE funding had been approved. In January 2020, I packed my bags and started a two-month inpatient stay. I believe it cost the HSE at least €55,000-€60,000.

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Part of the guilt and shame that comes with an eating disorder means I didn’t and still don’t believe I was sick enough to deserve the treatment, despite my belief that I would die if I didn’t get it. That guilt and shame is compounded by the knowledge that being admitted in this way – on the HSE’s dime – is rare. Of the 76 patients treated on the same dedicated eight-bed ward as me last year, eight or so were funded by the HSE.

I had a number of things in my favour including – I suspect – my geographical location, a GP willing to listen and a psychiatrist willing to refer me on, timing, and robust self-advocacy. Many times during my time in hospital I was reminded of my public patient status. I feared being discharged too soon several times because the funding had run out. I couldn’t access additional, very beneficial treatment programmes because I wasn’t covered. Staff bent and broke the rules to supply me with the best outpatient care they could after my discharge – outpatient care which was then decimated by the pandemic. I have had no contact or follow up with the hospital since my final discharge.

An eating disorder (ED) is a severe mental illness, and EDs have the highest mortality rate of all diagnosed mental disorders and are notoriously difficult to treat. We’ve talked so much over the last 18 months about the importance of looking after our mental health and talking to each other and getting into nature and downloading a meditation app.

The two months I spent in hospital were essential for breaking the cycle of bingeing, purging, restricting and over-exercising I had been in for years

Severe mental illness needs more than that though. It needs hospital beds and medication and psychiatrists and psychologists. Not a single penny allocated for improving eating disorder services was spent in 2020. No investment. No increase in beds or places despite the devastating effect the pandemic had on those already struggling with disordered eating and co-morbidities. There are those three public beds, while others end up in emergency departments, some in general psychiatric wards. Those with adequate health insurance may be admitted to private hospitals.

The two months I spent in hospital were essential for breaking the cycle of bingeing, purging, restricting and over-exercising I had been in for years. Recovery takes years and is not linear, but it put me on the right path. At the moment I pay about €600 a month for a private therapist and dietician and have routine appointments with the HSE psychiatry team that first referred me. If I needed to be rehospitalised I would still not qualify under my beefed-up health insurance because it is a pre-existing condition and it’s likely I would need to start back at square one.

I highly doubt I would receive funding for another admission, so the idea of full relapse is terrifying. I’m afraid of sounding ungrateful by criticising the system or the care I got. I’m not ungrateful but I am terrified to imagine what would have happened if I couldn’t advocate for myself, if I had presented closer to the pandemic or if I hadn’t found a doctor willing to listen.

Eating disorder treatment in this country is a complete lottery with no clear pathway, poor funding and boundless ignorance. Those affected are being forced to lay their guilt and shame and suffering bare. It is a national disgrace.