Former prime minister Theresa May recently chaired a parliamentary inquiry highlighting the dangerous consequences of having both an eating disorder and type 1 diabetes (T1D). Having been diagnosed with T1D later in life, Theresa May revealed that she was “horrified” to learn about the devastating effects of eating disorders in those with type 1 diabetes.  

With type 1 disordered eating (T1DE) in the news, we’re taking a look back at a session delivered at Diabetes Professional Care 2023 on disordered eating in type 1 diabetes by Prof Chrissie Jones, Dr Rose-Marie Satherley, Dr Katherine Wakelin and Katie Fitzgerald, who have all carried out research into T1DE at the University of Surrey.  

Dr Rose-Marie Satherley, Lecturer in Clinical Psychology at the University of Surrey, gives a definition of what is meant by disordered eating by using a traffic light system. “As everyone knows, there is a range of eating behaviours out there. Healthy eating habits in the green category would be a healthy weight for age, height and body type, and body acceptance.  

An amber warning might be a preoccupation with weight and shape, excessive exercising for weight loss, compulsive overeating or restricting food intake. This is the middle ground of people who haven’t got a clinically significant eating disorder but who have some difficult relationships with food.  

Serious signs of disordered eating are anorexia nervosa, diabulimia and binge eating disorders. Diabulimia is insulin misuse for weight loss in type 1 diabetes, and this is becoming increasingly common.” 

Rose-Marie highlights that, despite recent research suggesting that more young people are falling into the red and amber categories of disordered eating, worldwide there is not much work being carried out into T1DE. “Our team wants to understand how we can prevent children and young people with type 1 diabetes from developing disordered eating.”  

This is what the PRIORITY (PaRent InterventiOn to pRevent dIsordered eating in children with TYpe 1 diabetes) trial at the University of Surrey was designed by Prof Chrissie Jones and Dr Rose-Marie Satherley to achieve. The framework pulls together a number of recommendations to prevent disordered eating in young people with type 1 diabetes. Rose-Marie explains that “this intervention is designed for any family with type 1 diabetes, not just those concerned with disordered eating. It is a low-intensity, preventative psychological intervention, because unfortunately the NHS doesn’t have clinical psychologists in every service. (Jones et al., 2022; Jones et al., 2023)” 

Due to the prevalence of disordered eating among young people with type 1 diabetes, Dr Katherine Wakelin, Clinical Psychologist at the University of Surrey, underscores the need for early detection of any eating-related issues. “A higher proportion of children with type 1 diabetes present with disordered eating compared to children without type 1 diabetes. We therefore know that this is a vulnerable group, and due to the complexities of type 1 management coupled with eating disorder treatments, it’s really important that we screen and identify these children as early as possible.”  

Katie Fitzgerald, Trainee Clinical Psychologist at the University of Surrey, has looked into the attitudes of healthcare professionals towards disordered eating in T1D. Her research revealed that some healthcare professionals felt they had a good understanding of the physical indications of disordered eating, but found the psychological side more daunting. Katie also notes that “many healthcare professionals felt that having a psychologist within in the team, or one that they could refer to, was a solution to the problem. However, psychologists may also feel unequipped to manage the diabetes side of T1DE. So a collaborative approach is needed to be able to manage all aspects of the condition.” 

It can be difficult to know how to broach the subject of disordered eating in routine appointments. Using feedback from the PRIORITY trial, Katherine highlights some barriers that prevent open conversations around disordered eating during routine appointments (see Wakelin et al., 2023 for a more in-depth discussion): 

• Parents fearing that if their child learns about insulin misuse for weight loss, they may start doing this  

While this fear may be understandable, Katherine also highlights that “what we see time and time again in psychology is that conversations around risk behaviours don’t increase the risk, they reduce it. For example, we know that talking about suicide or self-harm reduces the risk of harm to self, rather than escalating it. This is because it allows the individual to express their emotions and identify alternative coping behaviours for managing. With the rise of social media and TikTok, it’s nearly impossible to prevent young people learning of weight loss techniques, including the misuse of insulin. Therefore, rather than trying to protect children from being exposed to this information, the emphasis is on educating and empowering young people to know what is dangerous and what is sensible.” 

• Psychology is not integrated into routine care  

Katherine knows that “practically, the NHS doesn’t have enough psychologists for all children with type 1 diabetes to routinely be able to access. But how can we as non-psychology healthcare professionals feel more empowered to start these conversations about disordered eating? You don’t have to be a psychologist to check in on somebody’s wellbeing.”  

Katherine recommends healthcare professionals to ask open questions during routine check-up appointments, such as: 

• Do you ever experience any difficulties with your mood or feel anxious in relation to your diabetes?  

• Many people find that type 1 diabetes can impact on their relationship with food, perhaps because things can feel more controlled; I wonder if this is something you can relate to?  

• Some people can feel more body conscious because they are different from their friends; is this something you ever feel?  

“These conversations can be small but frequent,” states Katherin. “It’s not about a huge amount more time being required because these appointments are time limited, but it’s more about how we can create a culture where we are starting to check in on people’s wellbeing.” 

• Fearing that the team will communicate insensitively about weight and food  

Katherine notes that it’s important to consider someone’s privacy when discussing weight during appointments. “Don’t shout a child’s weight across the waiting room, for example. It’s also about modelling a non-judgemental attitude around weight and food. This is thinking about the types of language we are using, moving away from a blaming and shaming approach and trying to open up conversations so they are less black and white.” 

Some of Katherine’s take-home messages for healthcare professionals to model speaking sensitively about weight and food are:  

• Rather than saying “that’s not a good blood glucose score,” try “I wonder what was happening for you when your blood glucose spiked here?” Rather than thinking about good and bad, it’s important to take into account somebody’s context 

• Avoid labelling foods as “good” or “bad”. If young people are told that there is a food that they can’t have, when they do have that food, this can increase the likelihood of bingeing on it because the young person might have the mindset that they have already had one bite, so they might as well have it all 

• Healthcare professionals can emphasise that no-one has a “perfect” blood glucose level 

• Offer clear guidance and practical tips about how to bolus for difficult foods 

• Parents feeling overwhelmed from managing their child’s type 1 diabetes and feeling they can’t take on extra information about disordered eating 

Katherine’s recommendations in this situation are:  

• Be mindful of a family’s emotional capacity, especially if recently diagnosed 

• Routinely check in on families’ wellbeing and offer support or signposting if appropriate 

• When reaching adolescence, speak to the child or young person separately from parents about risk-related behaviours 

• Consider only asking more follow-up questions about disordered eating if there are concerns 

Katherine concludes that “talking to families about disordered eating in type 1 diabetes might not be a conversation to have on day one, but as they have adjusted and adapted to their day-to-day management of the condition, bringing in these conversations routinely is really important.” 

Overall, the increasing prevalence of disordered eating in type 1 diabetes is worrying, however having sensitive conversations around eating and weight during routine appointments and involving parents in preventative measures can go a long way in encouraging children and young people to maintain healthy relationships with food.    

Further Resources 

Jones, C. J., O’Donnell, N., John, M., Cooke, D., Stewart, R., Hale, L., ... & Satherley, R. M. (2022). PaRent InterventiOn to pRevent dIsordered eating in children with Type 1 diabetes (PRIORITY): Study protocol for a feasibility randomised controlled trial. Diabetic medicine, 39(4), e14738. 

Jones, C. J., Read, R., O'Donnell, N., Wakelin, K., John, M., Skene, S. S., ... & Satherley, R. M. (2023). PRIORITY Trial: Results from a feasibility randomised controlled trial of a psychoeducational intervention for parents to prevent disordered eating in children and young people with type 1 diabetes. Diabetic Medicine, e15263, doi: 10.1111/dme.15263 http://doi.org/10.1111/dme.15263  

Wakelin, K., Read, R., O'Donnell, N., Baker, M., Satherley, R. M., Stewart, R., & Jones, C. J. (2023). Integrating Conversations About Disordered Eating in Children and Young People into Routine Type One Diabetes Care: A Practical Guide for Paediatric Diabetes Teams. Practical Diabetes 40(4),11-17, doi: 10.1002/pdi.2464 https://wchh.onlinelibrary.wiley.com/doi/full/10.1002/pdi.2464