Delays, distress, deterioration: Health system failing people with eating disorders

Noteworthy investigates the chaotic state of services and reveals that most cannot access adequate care.

By Maria Delaney

Noteworthy - Explore the stories that matter to you...

‘I’m really struggling’ — ‘You feel like your voice isn’t being listened to’ — ‘I would love some professional help’ — ‘You’re constantly having to battle for services’ — ‘It has a huge impact’

THESE ARE THE voices of people with eating disorders and family members who expressed their despair to Noteworthy about the continued lack of services around Ireland.

Stark news reports have repeatedly highlighted a postcode lottery for an already limited outpatient and inpatient care as well as funding diversions from eating disorders teams.

Emma Martin, who has experienced the difficulties of accessing treatment first-hand, says she had “given up” and couldn’t see herself getting better when she went to seek help. “I was waiting for a psychotherapist. I was waiting to see the dietician. Basically, it was just waiting lists. Every single week I went in, my weight got lower and lower.”

She finally got an appointment with a dietician, but soon after had reached the point where an inpatient stay was needed. “The minute I got admitted, I had psychotherapy twice a week. What that says to me is that the criteria to see the psychotherapist and get the support, was to be extremely underweight and on the brink of death.”

But after just under two months of “constant support”, she was “suddenly being discharged” with appointments an hour away from her home in Wicklow three times a week which she found “absolutely exhausting”.

Emma Martin wearing a brown coat and scarf with a quote by her on access to public treatment: You’re very much motivated to get worse in order to get the help you need, which means it takes even longer to get better.

 

The experience of deterioration while waiting for services, inability to access care unless extremely sick and ineffective – or in some areas non-existent – outpatient specialist treatment was mirrored in the many accounts Noteworthy heard over the past number of weeks.

For our SILENT TREATMENT investigation, in addition to conducting in-depth interviews with 15 people impacted by eating disorders (EDs), we asked healthcare professionals, politicians, advocate groups, the HSE and the Minister for Mental Health why people are being failed by the public health system. We found:

  • Only 55% of the staff for three new teams promised for 2021 have been recruited
  • Less than one third of available funding has been invested at all since 2016
  • There is “no approved implementation plan” for the “phased recruitment and training” of staff despite the HSE previously stating there was one was in place
  • Ring-fenced funding for 2022 will enable the development of an additional five new specialist ED teams, Minister for Mental Health Mary Butler told Noteworthy
  • Almost 40% of people surveyed by support group CARED Ireland felt ED services have deteriorated in the past year
  • Having “only three” ED beds and one community team “impacts on decision making”, according to a HSE spokesperson in response to adults being told their BMI was not low enough to access care
  • The timeframes for the promised 20 additional inpatient adult beds “are to be identified”, according to the Minister
  • A steady rise in inpatient numbers in acute hospitals for “eating and obsessive-compulsive disorders” over 10 years to 2020

The ‘huge difference’ in specialised care

Dr Caroline Maher gets calls from consultants around the country looking for advice about eating disorders (EDs). She says it is “really difficult” for locations “that don’t have specialised services to manage complex and sick patients, with really no training and no staff to do so”.

Maher is a Consultant General Adult Psychiatrist working in ED services based out of St Vincent’s University Hospital in Dublin. She is also the co-chair of the EDs Special Interest Group at the College of Psychiatrists of Ireland.

St Vincent’s is the location of the only adult ED specialist hub currently in operation as well as the only three dedicated ED inpatient adult beds in the entire country. However, only those living within the specific catchment area can get access to these services.

Ciara K** is among the majority of people with EDs in Ireland that fall outside this catchment area. She tried everything she could to be treated by the specialist team but could not be admitted.

It took her 18 months to get the care she needed, when she was eventually funded by the HSE for private residential treatment.

“The time between looking for care and getting it, a lot happened. My health deteriorated significantly. It shouldn’t be like that, but that was probably one of the only ways I managed to get care.”

Someone comforting another person by holding their hand with a quote by Ciara K on having to campaign for inpatient care: When you’re having to constantly battle for services, it reinforces to you that you are not ill or you are not deserving of treatment.
Source: Photo - Pressmaster via Shutterstock

Ciara has experience of both inpatient specialist ED treatment and general psychiatric care. She said that though “the nurses [in general wards] were fantastic”, staff with experience of EDs in the specialist unit “made a huge difference”.

She used mealtimes, which “can be quite a chaotic environment” for someone with an ED, as an example of where there was a “huge difference” in care. She explained that she “probably cried at every single meal and threw food across the flood on a number of occasions” but in the eating disorder unit, “there was no punitive action” and this helped with her recovery.

“I wish there was more consideration around the long-term impact of these illnesses. An eating disorder has a huge knock-on effect on someone’s life, the people around them and – if you let it go untreated – the prospect of someone’s future… I have missed what could be crucial years in terms of my career.”

Model of Care was to tackle ‘postcode lottery’

As part of the HSE’s Model of Care for ED services, 16 specialist community hubs – eight adult and eight child and adolescent – were promised as well as an extra 20 inpatient adult beds. This was to tackle the existing postcode lottery of services, according to Harriet Parson of Bodywhys, the Eating Disorders Association of Ireland.

“One of the reasons for the Model of Care was that no matter where you were in the country, you would have access to a specialist team. The idea was full of hope. If it was fully implemented, it addresses all of the aspects that are problematic.”

At the start of the HSE document it states: “Eating disorders have the highest mortality and morbidity [of] all of the mental disorders. They affect a relatively young section of the population and have enormous socioeconomic cost. However, effective treatment can substantially improve clinical outcomes and promote sustainable recovery.”

One of the key conclusions in the Model of Care is that “specialist ED teams have been associated with faster recovery, higher patient satisfaction, lower costs, lower rates of inpatient admission and better case identification”. This included community-based outpatient care which it stated “is the most appropriate treatment setting” for medically stable people with EDs.

Ongoing issues with outpatient care are having an impact. Emma Martin felt she wasn’t given the tools that she needed to cope after discharge and it took her a number of years to figure out “a balance with exercise”. She is now a yoga and aerial hoop teacher which she loves. Yoga gave her “a form of movement that had no association with calorie burning”.

Though she is in “a better place” now, Martin’s main priority is to get private health insurance so she doesn’t have to be as sick to get access to public services. “I was extremely lucky to get that bed and I don’t think I’ll ever get that again.”

There has been an even greater need for this national network of services in recent years. Maher and her colleagues in St Vincent’s saw a surge in demand for their services at the hospital since the pandemic, with referrals increasing by more than 120% last year, as reported by Noteworthy earlier this month.

This increase in EDs occurred across the world which Maher put down to a number of factors, including isolation during Covid, an increased focus on diet and exercise as well as the influence of social media.

Though clinicians have reported large increases over the past two years, it can be seen from Noteworthy analysis that there has been a steady rise in inpatient numbers in acute hospitals for “eating and obsessive-compulsive disorders” over a 10-year period to 2020.

Implementation delayed at least two years

The delivery of the Model of Care is the responsibility of the National Clinical Programme for Eating Disorders (NCPED) and both Maher and Parsons are part of the NCPED’s oversight group. Bodywhys received over €445k of HSE funding last year for provision of a number of services, including some supports that are part of the NCPED.

Though the implementation “started off well” after its launch in 2018, according to Parsons, this was followed by two years with “very little progress in terms of recruitment” of specialist teams.

In 2018, €1.5m was allocated for the development of ED services but less than €140k of this was spent. In 2019, a further €1.6m was allocated, but this was not made available by the Department of Health so “no posts progressed” in relation to that year’s funds.

Then in 2020, an unspent balance of €3.94m was provided for ED services, but “was used to cover unfunded costs in mental health services” a spokesperson told Noteworthy in our report on this last year.

Overall, less than one third of the €7.9m in available funding for ED specialist posts has been invested since 2016. “The balance of €5.3 million remains available to invest,” according to a HSE spokesperson.

Those years “have slowed it all down and made it incredibly difficult,” added Parsons. “Then you have Covid and the cyberattack” which have made it even worse, she added.

This has set back the implementation of the Model of Care by at least two years, Parsons estimated. She said it was originally a five-year plan, to be implemented by 2023.

“I am acutely aware of previous delays in implementing the National Clinical Programme for Eating Disorders,” Minister Mary Butler told Noteworthy. She said she “made it a key priority since coming into Office in July 2020”. She is due to meet the NCPED team in the coming week to discuss progress in the programme.

People left on their own with no support

These delays have severely impacted numerous people around the country, including Joanne** who is based in the south of the country. She told Noteworthy when she asked for help for her disordered eating, she was told multiple times that “there wasn’t any public services available”.

She has never seen an ED specialist, including a therapist or nutritionist, despite her many attempts to access public services. When speaking to Noteworthy, she was very upset at the impact her ED has had on her life.

“My concern is it is the main thing that affects my mood and it is one of the main causes of my anxiety and depression.” With no support, she felt she is “on her own with it” as her GP told her “the only way is to go private” but Joanne can’t afford that.

A woman walking on a street with a quote from Joanne on her eating disorder not being treated: I'm really struggling and would love some professional help, but I'm constantly being told there's nothing that they can do or I'm not severe enough.
Source: Photo - stockfour via Shutterstock

The main concern of those who spoke to Noteworthy was inadequate access to care. Aoife Cunningham said that she “had to get really sick in order to get the help” she needed. She put this down to the lack of specialised care available, with her ED “overlooked” when she “first started struggling” because her “weight wasn’t dangerous”.

Cunningham had been attending the Child & Adolescent Mental Health Service (CAMHS) since she was 14, made an attempt on her life at aged 16 and since moving to adult services has been admitted to hospital on a number occasions. She ended up on life support during a recent admission after she aspirated into her lungs while being tube fed under sedation.

“I was an inpatient from February to August and I didn’t see anyone who specialised in eating disorders. If there was a specialist in the hospital last year, I wouldn’t have gotten into the state that I got to.”

When she was medically stabilised, the HSE funded inpatient care at a private residential ED facility in Dublin and said she “felt understood” for the first time.

She was discharged from specialist care four months ago and is “unwell again”. She said that there are not enough public ED beds and it is “impossible to get funding”. She doesn’t think she would get a private bed again and “can’t afford treatment”.

“It’s really hard to deal with… having to accept there [are] not a lot of options. Knowing how sick I could get… maybe my eating disorder will kill me. That’s really terrifying.”

Aoife Cunningham hooked up to machines while on intensive care with her quote: For the first year or two... before my weight started to drop, my mental state wasn’t taken into account until my physical state matched.

A key concern of parents as well as younger people with EDs was the transition from child and adolescent to adult services. All who spoke to Noteworthy said they had had negative experiences, including relapses, or were parents fearing this transition if their child had not reached 18 – the age that people are moved out of CAMHS.

This coincides with the average onset of anorexia (14-18), bulimia (14-22) and binge eating disorder (late teens to early 20s).

Every advocate group and healthcare professional said that once the Model of Care is fully implemented this would improve, especially when both adult and CAMHS community services are operating in the same catchment areas. However, until then, they acknowledged that many teenagers across the country will continue to receive inadequate care.

Sinéad O'Loughlin wearing a string top and earrings with a quote which is part of our article on transition to adult services: As I turned 18, I went into the adult services... They didn’t have a dietician or anyone that really knew what they were working with.

Premises for existing hubs delayed

To date, in addition to the adult community hub based in CHO6 (South Dublin/Wicklow), there are also two CAMHS hubs in place – in CHO4 (Cork/Kerry) and CHO7 (Kildare and parts of Wicklow/Dublin). For these existing teams, “25.2 new staff have been recruited, with additional posts in the recruited process”, according to Minister Butler.

However, two of those hubs currently accepting patients are still awaiting new premises.

Mount Carmel Hospital – the new location for the adult community team currently based out of St Vincent’s – was to open its premises at the end of 2021, but was recently reported to be delayed to mid-2022.

Maher said “it’s very disappointing” and added that overall the implementation “is very behind” what it should be across the country due to “financing for the development of services”.

Minister Butler also expressed her disappointment in this delay and said she “will continue to closely liaise with the HSE on this matter to ensure it is completed as a matter of priority”.

The CAMHS team in Cork are also awaiting their own space. A HSE spokesperson told Noteworthy that they are “scheduled to move to a new facility in April 2022”.

Map of Ireland marked with CHO (Community Healthcare Organisation) areas. Area with specialist teams are outlined: CHO4 - CAMHS, CHO 6 - Adult, CHO 7 - CAMHS. Teams in progress are CHO2 - CAMHS and CHO 4 and 6 - Adult.

‘No approved implementation plan’ for recruitment

Three additional teams – two adult (in CHO4 and CHO9) and one CAMHS (CHO2) – were announced on Eating Disorder Awareness Week last year by Minister Butler, but one year later, none are in operation.

In a response to a Freedom of Information (FOI) request by Noteworthy, the HSE stated that funding was provided for 34 posts across these three teams in 2021, with 55% of posts filled and 45% – or 15 staff – in the recruitment process.

This FOI request sought a copy of an implementation plan that the HSE stated in February 2021 had “been approved to allow for phased recruitment and training” of ED specialists. This was in response to a parliamentary question (PQ) by Social Democrats TD Holly Cairns.

However, “there is no approved implementation plan as per previous PQ response”, according to the HSE’s FOI response

Cairns told Noteworthy that she keeps raising ED services in the Dáil, but feels she gets “fobbed off”. When we told her of this incorrect statement in the HSE’s PQ response, she said: “I’m not that surprised I got that response – which is basically another version of being fobbed off.”

She felt that there was “a lack of political will” to implement services quickly. “We’ve seen from the last two years… that things can happen quite quickly when we treat it like a crisis. When it’s costing people’s lives, this is a crisis.”

This slow progress is reflected in a recent survey by CARED Ireland of people impacted by EDs, which Noteworthy has received in advance.

It found that almost 40% of respondents felt that ED services have deteriorated in the past year, but this rose to over 60%, when ‘don’t know’ responses were excluded. Only 8% said they had improved. 

A spokesperson for CARED Ireland – a voluntary group of parents and carers of people with EDs – said: “People are saying that the services are deteriorating and are under more pressure. It’s a complex difficult condition that requires real understanding.”

Almost 80% of over 290 people who responded to the same survey had accessed treatment through the public system, with almost 40% unhappy with the ED service provided.

The group met with Minister Butler in June and just last month met with the oversight group for the National Clinical Programme.

A spokesperson said that they “came away feeling like they were listening to” after the Minister’s meeting. They added that they “were led to believe… that she would work hard to prioritise the improvement of services for eating disorder treatment”.

They told Noteworthy that having recently requested a follow-up meeting, they were told the Minister’s “extremely busy” diary did not permit this, but a response to queries in writing was offered. 

The CARED Ireland spokesperson said that this response was “very disheartening” and added: “Combined with none of the three new specialist eating disorder centres opening – vital services she promised last March – it begs the question if the Minister is truly treating eating disorders with the seriousness and urgency they deserve or is this just more lip service and rhetoric?”

On Friday, they sent a detailed letter to Minister Butler which described how they were “frustrated, exhausted and disillusioned” and left to provide care for their loved ones. They called for the Model of Care to be “fast tracked without further delay and adjusted to deal with the surge in demand for services”. 

Child with arm around adult with quote from Caroline on her daughter not having access to a specialist team: I even thought about moving to England just so she'd have some support, but I shouldn't have to uproot me and my children just to get help.
Source: Photo - Wiola Wiaderek via Shutterstock

Promise to prioritise ‘ongoing development’

When asked about the remaining 10 community teams that have yet to be put in place, Minister Butler told Noteworthy that “the ring-fenced funding of €1.15 million for this year, will enable the development of an additional five new specialist eating disorder teams, bringing the total number of teams to 11”. These will be located around the country (CHOs 1, 5, 6 and 9), according to the Minister.

The HSE spokesperson said that “all sites are committed to filling the posts and creating these specialist teams”. Minister Butler said she “will continue to prioritise the ongoing development” of specialist ED services “through annual budgets including in the forthcoming Budget 2023”.

Fiona Coyle, chief executive of the Mental Health Reform said that “the Minister has ring-fenced the funding” and “the issue now is to move it forward internally within the HSE and set up those teams, utilising money that is committed”.

“It’s not enough to have a half-baked ED service” as the issues that keep coming up “again and again” won’t be “dealt with until the Model of Care is realised”, Parsons told Noteworthy. “We need to know that [funding] is going to be there because we can’t plan a service in the hope of funding.”

Daniel O’Boyle said it’s “hard not to be cynical” when it comes to Government promises on funding. He has been campaigning for better ED services and told his story as part of RTÉ’s recent documentary ‘Unspoken’ about men with EDs.

He felt that “there are a lot of platitudes” when it comes to ED services. “That’s all good and well, but if you’re not offering the supports behind that, your words are empty.”

The advocate was also critical of the funding that Operation Transformation received from the Department of Health – reportedly over €561,000 in the last two years – which he said was “insulting to eating disorder sufferers and their families”.

“At the same time, I am hopeful and would love nothing more than to be proven wrong… and for these services to be available for people to access them at a quick enough pace to prevent deterioration of their illness.”

‘Detrimental’ impact of later intervention

Like almost all people impacted by EDs that we spoke to, O’Boyle talked about the importance of early intervention. “Any time wasted” when it comes to EDs, “is hugely detrimental to physical and mental health” – something which he said is unfortunately happening at the moment as people can’t access services.

Daniel O' Boyle wearing a blue short with a quote by him on the need for early intervention: If you catch the eating disorder early enough, before it can bury deep into a person’s psyche, then you can save them a lot of years  and potentially save their lives.

Sarah* told us about the impact that access to a specialist community team – one of the two in operation for children at the moment – had on the recovery of her son’s eating disorder when he was 14.

“We had a sense that something was up with our son, he began to focus excessively on getting fit and eating healthy along with a change of mood.”

They were referred to the outpatient service where they found Patrick* was “firmly entrenched in anorexia”. She said that “families need the support of a skilled and trained team” which is what they got in the specialist hub. “We were given the skills that empowered us to be able to inch step by step forward towards recovery.”

Sarah puts Patrick’s recovery down to “getting into the programme early and getting that support”. He was discharged from the CAMHS less than a year after his initial referral.

“He coped well during the pandemic… and hasn’t looked back,” said Sarah who added that “everyone with an eating disorder deserves to have early access to the treatment we received”.

Child writing with pencil with a quote by Sarah on her son’s treatment by a specialist team: We got into CAMHS outpatient eating disorder service early. Thankfully, we have come out the other side. I attribute this to early intervention.
Source: Photo - Iryna Mylinska via Shutterstock

Low level of services ‘impacts on decision making’

A postcode lottery is not only in place for outpatient specialist ED services, but Dublin is the only location for both public and private adult inpatient specialist care.

Many people told Noteworthy that their ED was not taken seriously unless their weight was extremely low and a number said that healthcare professionals told them they would not be admitted as a public patient unless their BMI was under 13.

This is the BMI in the clinical guidelines – Management of Really Sick Patients with Anorexia Nervosa (MARSIPAN) – that is classed as “high risk” for people with “severe” anorexia where NG feeding may be required.

They also told us that being told that their BMI was not low enough for a bed led to a deterioration in their health, prolonged their recovery and fed into the already competitive nature of their ED.

A HSE spokesperson referenced the MARISPAN guidelines and said “weight (BMI) is only one criteria used to assess risk in people with eating disorders” with medical, psychiatric and social risk also examined. 

“These guidelines assist decision-making in relation to best treatment setting which includes medical admission and / or psychiatric admission.” The spokesperson continued:

There are only three specialist ED beds for adults in Ireland and one specialist community team which impacts on decision making. The HSE recommends early intervention and to provide this, specialist community teams need to be in place.

Parsons of Bodywhys said the BMI cutoff is “a way of managing numbers” due to the low number of available beds and is putting specialists in “very difficult” positions.

Psychiatrist Maher said that “a gap in education and training” may have led to “many of the acute services not expecting people to be presenting” with higher BMIs.

She said that people are familiar with “very underweight” presentations but in recent years she has seen “people [that] are very starved but may not be particularly underweight” which “is leading to some confusion in terms of diagnosis in acute services”.

To improve this, Maher said that the Royal College of Psychiatrists have drafted new guidelines which “should be ratified very soon”. These change the focus from anorexia to “acute management of eating disorders” because “we now know that some of the patients may not fulfil the criteria for anorexia, but that they do indeed have a very serious ED that needs to be addressed”.

Daniella Russell who has had an ED since she was a teenager felt that having more healthcare workers trained on EDs would improve their understanding and make a big difference to care. She is currently training as a nurse but said in class “it was skimmed for 10 minutes” before they moved on.

The HSE spokesperson said they are hosting a webinar - Recognising and managing medical emergencies in eating disorders - “which is open to all medical staff” this Wednesday “in response to the need across medicine”. This will “be recorded and made available for future training events”.

Training of GPs was also raised by people who were finding it difficult to access services. Dr Aoife O’Sullivan, who is the GP clinical lead for the NCPED told Noteworthy she worked with the Irish College of GPs and the NCPED “to develop new GP guidelines”. These were launched last year, with over 2,000 GPs attending a webinar to raise awareness of them.

Workshop in kitchen with a quote by Daniella Russel on how her eating disorder progressed as a teenager: The deeper I got into it, the more happiness, joy and love I lost. That was left with a void that was filled with fear, pain and strict eating disorder rules.
Source: Photo - MONNKA via Shutterstock

Timeframes ‘to be identified’ for additional beds

The “lack of community services is crucial”, according to Maher, as that “reduces the amount of beds needed and allows people to leave hospital earlier”. Though until these are in place, it was anticipated by experts we spoke to that high demand for inpatient services would continue.

For CAMHS, care is provided in all four regional units, with Linn Dara in Dublin having eight dedicated ED beds and Merlin Park in Galway having six. There are also plans for eight additional beds in the new National Children’s Hospital. However, there are just three adult dedicated ED beds – all in St Vincent’s University Hospital.

“Adults who require in-patient care are admitted to local general adult approved centres and can attend generic inpatient treatment programmes,” explained the Minister.

A spokesperson for the Department of Health told Noteworthy that “the Government is committed to progressing” the development of the recommended 20 additional adult inpatient beds: an additional three beds in St. Vincent’s, five each in North Dublin, Galway and Cork, as well as one in both Limerick University Hospital and St Luke’s Kilkenny.

When will these additional beds be available? “Timeframes for new beds are to be identified,” Butler said.

Minister Mary Butler wearing a white jacket, black top and necklace talking into microphones at a Government of Ireland podium. Minister for Mental Health Mary Butler says she has made eating disorder services ‘a key priority’
Source: Gray Ashe via RollingNews.ie

Noteworthy also spoke to people involved in the running of two approved private centres in Dublin, Lois Bridges – which has been in operation as an inpatient and outpatient unit since 2010 – and the National Eating Disorder Recovery Centre (NEDRC) – which was set up last year and is operating on an outpatient basis currently.

Darren Wright, operations manager of Lois Bridges – a centre which a number of people who spoke to Noteworthy had attended – said that their seven beds “are operating at capacity all the time” but “there’s not a huge waiting list”. Patients are normally either publicly funded or come through a private health insurer.

Wright felt that the growth in services needs to happen outside of Dublin – in Cork and Galway – where there are “no dedicated private or public beds”. He said that is “a need that is not being met at the moment”.

Carla Johnston, director of services at the NEDRC said that it is currently approved as a six bed facility but they have been met by the HSE with “radio silence”. They have had referrals of HSE patients, according to Johnston but no funding approval to date.

When asked about this, a HSE spokesperson told Noteworthy that it “funds patients in private facilities” but did not comment on the NEDRC. “Decisions are made based on individual clinical need (as assessed by the local mental health team) and the prioritisation of available funding.”

The NEDRC are also currently waiting for private health insurance agencies to finalise cover for their inpatient service as well as the approval for four more beds. “There wouldn’t be a need for a private service, if the public service was running properly and sufficiently,” according to Johnston.

When asked about access to private inpatient beds through the HSE, including the beds available in the NEDRC, the Minister said the decision to fund private treatment “is made by the HSE on a case-by-case basis” and that she “cannot be involved in matters of clinical guidance, nor can I comment on individual cases”.

Private care costing thousands

While waiting for public services to be rolled out across the country, people have turned to private care, with some spending thousands on treatment.

Lisa Murphy hit the headlines last year when she resorted to crowdfunding for inpatient treatment at a private centre when she was unable to secure HSE funding for treatment for bulimia. She raised almost €65,000 within a few days.

“It had gotten to a point where I felt totally out of options.” She felt that she wasn’t going to live very long unless she tried to do something about it herself.

However, when Noteworthy caught up with Murphy recently, she felt sad that she had to put herself out in the public sphere in order to get the treatment she needed. “I had a long history at that point of serious self-harm and a suicide attempt.”

Lisa Murphy wearing a brown top with a sunflower on it while sitting beside a glass window with a quote on crowdfunding her treatment: I feel sad that I had to put myself out there like that... I would be angry at the huge risk as I was already so vulnerable.

She is grateful that the crowdfunding “was a huge success” and is extremely grateful for the support she received, but said “it also might not have been a success”.

“That’s a very vulnerable position to put yourself in when you’re already so vulnerable. What if it hadn’t gone as well as it had and then I would have been in an even worse position.”

Murphy called for a complete system change and said that access to good care “seems to be a total lottery at the moment” and said “it’s astounding” the inequity she has seen on the ground. “We live in a country where the money is there for provision for a good health service. It’s just not being spent or allocated properly”.

Sinéad O’Loughlin said she “is lucky” to have private healthcare so could access private inpatient and outpatient care. Without this, she felt she wouldn’t have been able to access proper support or a private residential centre where she is hoping to get treatment in the coming weeks.

Being based in Wexford where there are no child or adult specialist ED community services, she said she only has access to general mental health community services through the public system. Before she turned 18 she was admitted for specialist treatment, but because of this looming deadline, she felt she was rushed in and out.

To overcome this, her mother Elaine – who is a single parent – told Noteworthy that she has spent over €28,000 over the past two years to help her daughter’s treatment. This included covering the cost of specialists and scans. Supervised meals can be an important part of ED recovery, so she also paid a nutritionist to do this for Sinéad on the days she was working.

Sinéad O’Loughlin wearing a black top, white jacket and necklace standing outside a historic building with a quote by her on the lack of public specialist teams: I can’t fully heal from it alone... You’re left wandering in the dark with no one really knowing what they’re doing.

Self-funding ED treatment such as clinical appointments, even with private health insurance, is not unusual. Though health insurance plans can enable people to access certain specialist services, CARED Ireland found that 60% of those surveyed with private health insurance “have been unable to access ED treatment services through their plan”.

We told Minister Butler about this volume of spending by Elaine and asked her what the Department of Health is doing to help parents who are turning to private care due to a lack of public treatment.

She said: “Sadly, as you have highlighted, eating disorders often have a very high cost for individuals and their families, as well as for health services and broader society, when they are not treated or are not treated effectively”, and continued:

I would like to take this opportunity to convey my sincere sympathies to anyone living with an eating disorder and their families who do not feel they are receiving the appropriate supports.

“I recognise it takes immense courage to seek help from mental health services when struggling with an eating disorder and that we have the responsibility as service providers to ensure we are there to support people when they need care and support.

“While recognising that this is likely of little consolation to those who have shared their personal experiences with you, I wish to assure you that I remain firmly committed, along with Government as a whole, to enhancing specialist eating disorder services, including improved access and shorter waiting lists.”

Mental health system data ‘just not there’

As part of this investigation, Noteworthy requested up-to-date data on referrals to specialist teams, inpatient admissions to dedicated beds, numbers currently waiting for assessment and treatment after assessment as well as detailed breakdowns of spending.

Though some of this data – 2021 activity by the three community teams in place – will be published tomorrow as part of ED Awareness Week, no recent figures were provided to Noteworthy and some are not available due to the lack of a data system across the mental health service – something identified as a priority almost 20 years ago in the 2006 national mental health policy – A Vision for Change.

In response to our data request, the HSE spokesperson said that “our mental health systems do not capture data on service users by clinical diagnosis”. They added that “90% of new / re-referred adults are offered an appointment within 12 weeks” and stated that “therefore waiting lists are not collated nationally” for adult community mental health services.

In addition to this lack of data, even estimates for levels of EDs in Ireland are difficult as “no Irish study has comprehensively researched the epidemiology of eating disorders in Ireland across the age range, and only one prevalence study on eating behaviour and attitudes in adolescents has been undertaken in Ireland”, according to the Model of Care in 2018.

“We don’t know how many people are accessing our mental health services, what they are coming in for – that data is just not there,” explained Coyle of the Mental Health Reform. “Covid and the recent scandal in Kerry has shown how outdated the system is. There is no integrated system.”

‘Pleading for appropriate treatment’

A woman walking on a street with another quote from Joanne on her eating disorder not being treated: I thought my problems just weren't severe enough to access services and treatment but unsurprisingly it is the mismanagement of HSE services and funding.
Source: Photo - stockfour via Shutterstock

Though this investigation wasn’t able to access the latest data to show what is currently happening to people going through ED services, it was not difficult to find account after account of people in distress trying to seek help for themselves or their family members.

In addition to the interviews we conducted, CARED Ireland provided us with a number of stories written by parents who were not able to access services for their children. These were presented to Minister Butler when the group met her last June.

They wrote about “constantly worrying”, “being failed right from the outset” and “pleading” with healthcare providers for “appropriate treatment”. The strain on the entire family was evident as they documented how their children got sicker from this complex illness, were often hospitalised and in many cases needed medical feeding.

One parent wrote that their child had to be transferred to the UK for treatment due to the lack of beds available here. She has now turned 18 so has “no services” in the community and “suffers from PTSD from feeding under restraint”.

Another fought in court to access treatment for their daughter in London. “We trusted our healthcare system and our health care professionals.” They said that they felt the HSE let them down and wrote a message to the health service: “You know what our beautiful loved ones need but you are not providing for them.”

Everyone that Noteworthy spoke to said these issues would be resolved with the right priority, adequate funding and the full implementation of the Model of Care.

For people like Joanne who have been unable to access treatment, she told us that in the past she felt her “problems just weren’t severe enough”. She said she now realises it wasn’t for that reason she has no access to specialists but “unsurprisingly it is the mismanagement of HSE services and funding”. 

*Names have been changed to protect children with eating disorders
**Asked for surname not to be used

If you need to speak to someone, contact:

 —

Design for SILENT TREATMENT project - Woman holding a broken mirror with her reflection in it.

This investigation was carried out by Maria Delaney of Noteworthy, the investigative journalism platform from The Journal. It was proposed and funded by you, our readers with support from the Noteworthy general fund to cover additional costs.

You can support our work by submitting an idea, funding for a particular proposal or setting up a monthly contribution to our general investigative fund HERE>>

We also have a number of health-related investigation proposals which you can view here

Proposals
   Search for Proposals