'I'm terrified of food - but I can't get specialist eating disorder treatment'
A woman whose wait for a diagnosis of a lesser known eating disorder left her feeling like a "problem that cannot be solved" has called for reform of how the condition is treated by Northern Ireland's health service.
Sinead Quinn, from Londonderry, said binge eating compulsions had made her "a prisoner in her own home, afraid of food and afraid of herself".
Binge Eating Disorder (BED) is not currently treated by eating disorder services in Northern Ireland - patients are instead referred to general mental health services.
The Department of Health said regional adult eating disorder services were commissioned to treat anorexia, bulimia and atypical presentations of these conditions.
BED is the second most common eating disorder in the UK, after atypical eating disorders, according to UK health assessment body NICE.
The Department of Health said it did not collate data on how many people in Northern Ireland are living with BED.
It also said there was no current review of the way the condition is treated.
Experts say specialist care within the health service is urgently needed to help people get a formal diagnosis and recover from BED.
Ms Quinn said her relationship with food had always been complicated.
"Food either brings me great comfort or I am terrified of it and that's because I have carried weight for most of my childhood and my adult life," she told BBC Radio Foyle's North West Today programme.
"A lot of my days have been filled with either thinking about food, dieting or binging. It's exhausting."
The 43-year-old said she experiences overwhelming compulsions to eat, which can lead her to consume up to 5,000 calories in less than 30 minutes.
"My binge patterns can change but for me it's about going to a shop to buy certain food items and not the same shop regularly, as you don't want people judging you," she said.
"I have a routine around it and, then, knowing the food is there - there is a feeling of release in that.
"The minute I finish eating, the shame and self-hatred sets in and that is a really horrible place to be."
Binge eating disorder involves regularly eating a lot of food over a short period of time until you are uncomfortably full.
It is a serious mental health condition where people eat without feeling like they are in control.
Symptoms include:
eating when not hungry
eating very fast during a binge
eating alone or secretly
feeling depressed, guilty, ashamed, or disgusted after binge eating
Binges are sometimes planned but can be spontaneous. They are usually done alone, and may include "special" binge foods and create feelings of shame or guilt afterwards.
Source: NHS
After losing 7st (44kg) last year through what she described as "restrictive dieting", Ms Quinn found herself returning to binge eating and, in turn, regaining some weight.
She decided it was time to ask for help.
With "fantastic support" from her GP, who recognised Ms Quinn met the diagnostic criteria for BED, she was then referred to the Western Trust's eating disorder service.
The referral was refused on the basis the service is not commissioned to care for BED - in line with all Northern Ireland's health trusts.
Ms Quinn has since been referred to mental health services, but she is concerned that care will possibly not be administered by an eating disorder specialist.
She described her feeling of being a "problem that cannot be solved", adding that it was a "very lonely place to be".
"Eating disorder services in Northern Ireland should treat all eating disorders."
According to the National Centre for Eating Disorders, one in two people in the UK who seek help for weight loss eat compulsively.
Nicola Armstrong, who is the eating disorder charity Beat's national lead for Northern Ireland, said weight gain was a symptom of BED and that could lead to "shame and stigma".
"This illness can be portrayed as someone being overindulgent or greedy and that is simply not the case," she said.
"Often people find that their case can be treated as a weight management issue rather than an eating disorder.
"What is needed in Northern Ireland is equitable access to evidence-based treatment for BED."
Prof Laura McGowan, from the Centre for Public Health at Queen's University, hopes the recently announced roll-out of a regional obesity management service for Northern Ireland would include screening of eating disorders like BED.
"BED is simply not widely recognised and the services for it not widely commissioned," she said.
"For BED patients, especially those living with obesity, there is such an unmet need."
NICE guidelines advise that children, young people and adults who have BED should be firstly offered guided self-help.
Sessions of cognitive behavioural therapy are then offered if self-help treatment is found to not be enough.
Ursula Philpot, a dietician and clinical lead for eating disorders with NHS England, described BED as the "forgotten eating disorder".
She was instrumental in the roll-out of an online self-help BED pilot programme provided by the Republic of Ireland's health service.
"BED is not well recognised either by people themselves who have it or by the medical professionals.
"They can see someone as having a lack of willpower, rather than having an illness.
"The work we have done in the Republic, we have found to be very effective - the expertise of the specialist workforce we have in the UK can be delivered to patients in Ireland online."
For Sinead Quinn, she's "at a point in my life, I know this cycle of binging and restrictive dieting needs to stop".
"I don't want to spend my days locked in the house in fear of food.
"It's no way for anyone to live."
If you have been affected by any of the issues raised in this article, information about help and support is available via BBC Action Line.
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