Avoidant/Restrictive Food Intake Disorder (ARFID) is gaining more attention as its cases rise across the UK. Families are finding it difficult to obtain the necessary support, according to various charities.
Understanding ARFID
ARFID is an eating disorder that is characterized by an intense aversion to specific foods, whether due to their taste, texture, smell, or appearance. It can also be triggered by a traumatic event, such as choking. Unlike anorexia or bulimia, ARFID does not stem from body image concerns. Despite its severe impact on physical and mental health, ARFID remains under-recognized and poorly understood.
The disorder was only classified as an eating disorder diagnosis in 2013. Since then, its prevalence has surged. figures from eating disorder charity Beat reveal that one in seven calls to its helpline now pertain to ARFID, up from one in 50 five years ago.
Beat also notes that 28% of calls about children under 16 now concern ARFID. However, awareness among healthcare professionals lagging behind. Beat estimates that eight in 10 eating disorder services in England do not explicitly mention on their websites that they treat ARFID.
A Personal Testimony: Arlo’s Journey
Michelle Jacques, mother to five-year-old Arlo, has firsthand experience with the challenges posed by ARFID. Arlo, who has lived with this condition most of his life, survives solely on milk and nutritional supplement shakes. He has not consumed solid food in years.
“Every door was getting closed,” Ms Jacques shared. “We’ve spoken to many families nationwide who face the same issues. Their general practitioners may not be familiar with ARFID, and many hospital staff lack understanding as well. The awareness and support are simply not where they need to be.”
Arlo’s condition has profoundly affected his family’s ability to enjoy normal activities. Michelle explained that they cannot go on vacation or dine out at restaurants. Their approach to meal times revolves entirely around Arlo’s specific needs. “We don’t offer him food. We don’t inquire if he’s hungry. If he wants milk, we provide it. We adapt our lives around his preferences.”
Recently, Arlo experienced severe illness and underwent an appendectomy. This brought his family to a crisis point. Despite past health complications, he has found some semblance of stability through current treatment, which involves nutritional support shakes.
Arlo survives solely on milk and nutritional supplement shakes
Limited Resources and Guidelines
One of the primary reasons behind the struggle for treatment is the lack of National Institute for Health and Care Excellence (NICE) guidelines specifically addressing ARFID. Mr. Tom Quinn, director of external affairs at Beat, highlighted the urgent need for greater awareness and resources.
“It’s definitely on the rise, and quite incredibly so,” Mr. Quinn emphasized. “Many people are unsure where to turn for help. Unlike other illnesses, there are no established NICE guidelines for ARFID, making it difficult for healthcare providers to offer appropriate care.”
“Treatment provision also varies widely based on location, creating what we often refer to as a postcode lottery,” continued Mr. Quinn.
Government and Charity Actions
In response to the growing demand for support, the Department of Health and Social Care announced several initiatives through the NHS 10-Year Health Plan. These measures aim to improve overall mental health services, including expanding support for eating disorders such as ARFID.
The plan includes recruiting an additional 8,500 mental health staff for both adult and child services, investing in Young Futures hubs, and ensuring mental health support is accessible in every school.
NICE, recognizing the gap in its guidelines for ARFID, stated that there was insufficient evidence to formulate recommendations at the time of classification. The organization committed to monitoring further evidence and revisiting the decision within the next two years.
Families’ Perspective
For many families, including Arlo’s, the journey to finding appropriate support is fraught with challenges. Despite limited services in Essex, Arlo’s family managed to secure treatment at a hospital in London.
“He’s now probably as healthy as he’s been,” Ms Jacques affirmed. “We’ve had to accept that ARFID is an integral part of our family life. However, there remains a critical need for greater awareness and support.”
Arlo with his family
The condition’s impact on daily life can be overwhelming. Families must navigate a system that often fails to recognize the seriousness of ARFID. Michelle Jacques and her son’s journey serve as a poignant reminder of the urgent need for better support and resources.
Conclusion: The Call for Change
The increased awareness and resources committed by the government and NICE are steps in the right direction. However, the journey to effective treatment remains tough for many families.
Arlo’s family has adapted their lives around the condition, and many others share similar experiences. It is imperative that healthcare professionals are educated about ARFID, and that treatment options are clearly communicated and made accessible across the country.
Beat, alongside other charities, continues to advocate for enhanced support and recognition for ARFID. If you are affected by this disorder or know someone who is, reaching out for help can make a significant difference.
Your Story Matters
If you have personal experiences with Avoidant/Restrictive Food Intake Disorder or know someone who does, we would love to hear your story. Your comments can provide valuable insights and help raise awareness about this misunderstood condition.
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