Eating disorders in Northern Ireland: a problem of unknown scale

How many people in Northern Ireland are living with an eating disorder? How many people develop an eating disorder in any given year?

The answer to both questions is: we don’t really know.

Scope spoke recently with Sian Ogle, from the Eating Disorders Association NI (EDANI), who said that, in Northern Ireland, the only figures collated are for people who receive a diagnosis while in hospital.

This captures data on the most profound cases but leaves information about the prevalence of mild and moderate cases in a shroud.

Moreover, not all conditions that are generally accepted to be eating disorders are dealt with properly or even diagnosed.

While statutory services are available for anorexia and bulimia, conditions like binge eating disorder (BED), Avoidant/Resistant Food Intake Disorder (ARFID) and the many other different types of eating disorder are unaccounted for in data and – to the best knowledge of EDANI – are supported or addressed by no statutory services whatsoever.

This creates two problems. No-one has any idea about the full extent of the issues involved – but, for eating disorders other than anorexia or bulimia, we do know that whatever that extent, it is not being tackled.

Ms Ogle told Scope that monitoring of eating disorders in Northern Ireland currently falls short of where it should be, adding that: “In general, people are underserved.

“Worldwide we know that around 7.8% of people will have an eating disorder at some point in their lifetime. In Northern Ireland, the only figures collated are people that receive a diagnosis from within a hospital setting.”

Department

Scope put several questions to the Department of Health (DoH) about the breadth and quality of both eating disorder services and data collection.

We told the Department that our understanding is that:

• Little data is gathered by the department regarding eating disorders
• Anyone who receives a diagnosis for anorexia or bulimia in hospital (and only in hospital) will have their case recorded as an incidence of eating disorder
• No clinical data whatsoever is gathered about other eating disorders, such as binge eating disorder or ARFID (Avoidant/restrictive food intake disorder), although EDANI provides the department with “monthly high-level monitoring data about its own work”
• There are currently no services commissioned that directly deal with or treat any eating disorders, other than anorexia or bulimia

We asked DoH if this was correct and, if there were any misconceptions, to please outline any errors of understanding. Their response was: “The Strategic Planning and Performance Group (SPPG) (formerly the Health and Social Care Board) within the Department and the HSC Trusts collect data around eating disorders. Trusts report monthly to SPPG in relation to both community and inpatient data.”

In terms of data collection, DoH said the SPPG does not gather figures relating to the incidence of eating disorders. They said health trusts collect data relating to the number of referrals to eating disorder services, as well as aggregate data for referrals and activity – although this aggregate data lacks detail as it “only pertains to the term ‘Eating Disorders’.” with no granular details kept on record.

DoH also provided us with numbers of referrals for the past five years. In total, roughly 500 adults are referred to existing services per year. Child referrals have increased over the past five years, from 211 in 2017-18 to 366 in 2021-22.

Of course, these numbers cover referrals. Referrals, by definition, point someone to an existing service – but, if no service exists for a particular eating disorder or related issue, there can be no referral.

Provision

So, what services do exist? Per the department: “All HSC Trusts work to the same regional ‘You in Mind Regional Care Pathway for the Treatment of Eating Disorders (2016)’ which uses a stepped model of care, commissioned to deal with the severe, enduring, and treatment resistant cases of Anorexia Nervosa, Bulimia Nervosa, and associated eating disorders.

“Services can range from targeted prevention, early intervention and supported self-help, specialist physical and mental health services, specialist eating disorder services, to highly intensive mental health services, which are usually intensive daily support and hospital-based care…

“Action 29(d) of the Mental Health Strategy commits to enhancing the regional eating disorder service and a business case to support this action is currently being developed by SPPG.  This will be a significant first step in improving mental health services and ensuring that those with eating disorders get the care and treatment they need.”

The DoH continued: “Options for improving eating disorder service provision across Northern Ireland have been examined by SPPG through the Regional Eating Disorders Network Group. The findings of the review shaped the strategic policy direction reflected in the Mental Health Strategy 2021-31, that was published in 2021.”

In other words, there are big gaps in services. And that has consequences.

What this means

It’s important to note that none of this means health officials have been asleep at the wheel.

In Northern Ireland, mental health has historically been an under-resourced part of the health service. That is not down to any decisions made today, or even in the past several years.

Moreover, trying to expand services at a time when the entire system is under massive pressure – and requires huge structural changes – is incredibly difficult, even moreso when demand is on the rise.

At the same time, while it is encouraging to hear that plans are underway to improve and expand services, eating disorders can be devastating. They can ruin lives. There is a need for comprehensive care.

Regarding data collection – and, in particular, the referral numbers collected by the SPPG - EDANI’s Sian Ogle told Scope: “Those figures don’t include people who have received treatment within primary care, so if you go and see a GP that is not collected, or receive any help within a community setting, such as community mental health services, which is what the vast majority of people receive.

“So anyone with mild or moderate eating disorder is treated within community settings – usually - and it’s only people with moderate to severe who usually go to hospital.

“The collected figures don’t count people who are seen privately, but we would see four or five thousand people a year, whereas the number within the department - i.e. hospitals - is more like 500.

“This has huge implications, and major implications in safety for patients. We are underestimating what services are needed to meet demand.

“I would have done an awful lot of work around this as a volunteer but just due to the sheer number of people coming through and requesting support that’s not always easy.”

Changes 

In simple terms, the problems are two-fold: a lack of data, which makes measuring the scale of problems and tracking the success of interventions more difficult; and the availability and even existence of services, with some eating disorders lacking suitable treatment at this time.

These problems are interrelated – good data can direct good service design while, given a lot of current data is based on referrals to services, access to services is also critical for collecting statistical information.

Ms Ogle told Scope that, ideally, data collection would be based on contacts, rather than referrals, and that any time someone spoke with GPs, community mental health services, charity workers, staff in schools or other relevant people, a record of this could be made.

Data collected in that way would come much closer to showing the number of incidences of people with eating disorders in NI.

She also wants to see better training for professionals who might find themselves dealing with eating disorders – including GPs, who “only get, on average, two hours of training on eating disorders throughout their career, so a lot of the time they don’t know these issues and aren’t in a great position to give correct advice.”

That training should also include focus on lesser-known eating disorders, such as ARFID, which is like a phobia of food and is often related to other sensory challenges.

“It tends to be quick onset, and can go downhill quite quickly. Right now, there is nowhere in Northern Ireland that’s commissioned to support anyone who is dealing with ARFID.

“A woman came to me recently and said she was concerned that social services will remove their child, because on paper the child seems to be failing and she’s worried that social services will think it’s her fault.”

All these improvements should be geared towards not only providing a comprehensive set of services, but doing so quickly, and with a focus on prevention (as far as possible) rather than treatment.

Ms Ogle said: “The big thing is that it’s so clear from research that early intervention works. There’s such a narrow window where, if you can get in early, it really can change the course of someone’s while life. They can recover fully, as opposed to risking that they spend the rest of their life entrenched in their eating disorder.

“The first eight to ten weeks are crucial, that’s when interventions work best, and it feels like we are really failing people.”