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The Dilemma of Diabulimia: “The World’S Most Dangerous Eating Disorder Most of Us Have Never Heard Of” (Metro, 2017)

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The Dilemma of Diabulimia: “The World’S Most Dangerous Eating Disorder Most of Us Have Never Heard Of” (Metro, 2017) The Dilemma of Diabulimia: “the world’s most dangerous eating disorder most of us have never heard of” (Metro, 2017) Fiona Kennon BA, PGCE, MSc Systemic Family Therapist, Adult Eating Disorders Unit Priory Hospital, Cheadle Royal & DWED What does this look like to you? Recording weight regularly Outpatient Clinic x 4 Encyclopaedic knowledge of the calories, carbohydrate and fat content of foods. DAFNE.uk.com Planning exercise carefully. Prevent blood extremes Restricting certain types of food Better control Keeping a ‘food diary’ or lists that consist of food and concordant information Back on track (diabetes.co.uk) Being pre-occupied with thoughts of food Pre-Occupation Necessity This is understandable; this is a problem This is understandable; this is a problem What’s currently being done? 2018: NHS England, 2 pilot studies: • King’s College, London, Specialist clinic [Khalida Ishmail] • Bournemouth, Out-patient T1DM and ED collaboration [Helen Partridge] 2019: NIHR funding King’s College, London • £1.25m for STEADY project [collaborative project led by Marietta Stadler over 5 years. Developing an experience-based co-design CBT intervention for out-patient use 2009-2019 DWED (Diabetics with Eating Disorders) • Raising awareness • Fire-fighting • Facebook support groups I didn’t receive help as they just wrote me off as non I have asked for help three times now compliant and all I was told through my GP and specialist doctor and was “you will die by 40 or have been dismissed every time. First time sooner if you carry on” I was told by a mental health professional that my BMI wasn't low enough to be considered by an ED team, second time I was told that we should "just put the eating disorder to one side and focus on BARRIERS TO TREATMENT getting my blood sugar under control“ and most recently I was told that I "just need to do my insulin” other wise I’ll be lucky to see November. I'm honestly at a point now where I don't know what to do. I’m still waiting for help! Finally got a My mental health team, referral to an ED kept saying it's for the service after over 50 diabetes team to deal with episodes of DKA and the diabetes team said it was for mental health to deal with. My treatment was disjointed. I was arguing in inpatients to get Even when I was at one stage lucky more insulin as they weren’t enough to see a diabetes giving me enough. Diabetes psychologist I was discharged, clinic said it was an ED problem, despite them acknowledging I I was admitted to an eating ED said it was a diabetes needed more support because it disorders unit for 11 months and problem wasn't as 'simple' as focusing on treated for anorexia. While I do blood sugars/injections suffer from that, my treatment was not based around my insulin omission and I had to find my own reasons for recovering which I am now doing without the help of BARRIERS TO RECOVERY professionals. I was referred to ED services, but I was offered a psychologist after after initial assessment my case was mentioning numerous times over a closed due to my weight not being period of 6 years that I needed help. It low enough. They referred me on to a turned out she didn’t know about therapist who knew nothing about diabulimia and she tried to treat me type 1 diabetes and kept asking me if for bulimia and anorexia instead I had "good numbers now", which which failed made my condition worse Themes of experiences Practical problems • Where should the patient be treated – ED or T1DM clinic? • What’s the referral pathway? • Whose is the overall responsibility? • In-patient treatment – is there an understanding of pump therapy/DAFNE/hypo and hyperglycaemia? • Where are the support groups? • How do we disseminate information about this complex condition when even medical professionals have never heard of it? • NB Remember the higher risk of relapse which women with T1ED have in comparison to their peers with ED (Colton et al., 2015) What are the guidelines? NICE GUIDELINE NG(69), 2017 • collaborate • collaborate • agree • explain • consider • educate • Never stop giving insulin Patients’ perspectives Complications of T1DM Is this normal? Pregnancy and IVF Peer-support when it’s tough Not being listened to as a patient Experiences of service providers Further research needed: Nutrition concerns: • Should we NG feed? • Dietary management • Management of complications Family perspectives: • Research suggests that family functioning impacts diabetes management (Moreira et al., 2013) My research: • Qualitative study exploring experiences of 3 mothers Parenting a child with T1ED Family indicated in adolescent & young person ED treatment Would this help in T1ED treatment? Need to understand experiences of families Literature Search Interviewed 3 • lots on FT & ED Mothers • some on FT & T1DM • battling • nothing on FT & ED • blaming Themes • surviving • loss “we would go to hospital and get “you always make sure you’re the same response – ‘why are you dressed smarter than they are; your doing this to yourself?’. No-one said file…turn up with a file and make ‘hang on, this is happening, how do sure it’s fatter than theirs. Learn we work as a team?’ their speak and don’t get upset” “then you realised they were just mums and dad like us, there was “you’re not just nothing wrong with them as fighting the system, parents; they’d all had to fight so you’re fighting hard to get treatment” everyone else as well” BATTLING & BLAMING “Gerry hacked into their system…well, this is what “I said 'Oh, can you liaise with the diabetes unit as to how you have to do” the diabetes is managed? And he said 'No, no we don't need to do that, we have our own doctor here'. And I said 'But is that person a diabetes specialist?' And he said 'No, we don't need a diabetes specialist. We can manage the diabetes here'. Well of course, my anxiety is rising” “I would spend hours at A&E trying to get her admitted” “you go to the diabetes people and they say ‘we don’t do mental health’; you go to the ED people and they say ‘we don’t do diabetes’ ” What can you do? • Expertise and expertism • Listen to patients and families • Be aware • Consult NICE CG 69 pp.409-414 • Educate yourself: • www.diabetes.org.uk/diabulimia • www.DWED.org.uk • “Prevention and recovery from eating disorders in type 1 diabetes: injecting hope” Goebel-Fabbri, 2017, Routledge • www.eatingrecoverycenter.com References: BBC. (2017). BBC Three - Diabulimia: The World's Most Dangerous Eating Disorder. [online] Available at: https://www.bbc.co.uk/programmes/p05gh0lf. Clery, P., Stahl, D., Ismail, K., Treasure, J. and Kan, C. (2017). Systematic review and meta-analysis of the efficacy of interventions for people with Type 1 diabetes mellitus and disordered eating. Diabetic Medicine, 34(12), pp.1667-1675. Colton, P., Olmsted, M., Daneman, D., Farquhar, J., Wong, H., Muskat, S. and Rodin, G. (2015). Eating Disorders in Girls and Women With Type 1 Diabetes: A Longitudinal Study of Prevalence, Onset, Remission, and Recurrence. Diabetes Care, 38(7), pp.1212-1217. Dafne.uk.com. (2019). DAFNE Home. [online] Available at: http://www.dafne.uk.com/. Diabetes.co.uk. (2019). Diabetes.co.uk - the global diabetes community. [online] Available at: https://www.diabetes.co.uk/. Domargård, A., Särnblad, S., Kroon, M., Karlsson, I., Skeppner, G. and Åman, J. (2007). Increased prevalence of overweight in adolescent girls with type 1 diabetes mellitus. Acta Paediatrica, 88(11), pp.1223-1228. Fairburn, C., Peveler, R., Davies, B., Mann, J. and Mayou, R. (1991). Eating disorders in young adults with insulin dependent diabetes mellitus: a controlled study. BMJ, 303(6793), pp.17-20. Gamble, E. (2019). Stupid questions diabetics get asked with comedian Ed Gamble. [online] Facebook Watch. Available at: https://www.facebook.com/ShortListOnline/videos/10155097139293947/ Hevelke, L., Albrecht, C., Busse-Widmann, P., Kranz, J., Lange, K., Markowitz, J., Marshall, L., Meurs, S., de Soye, I. and Saßmann, H. (2017). Prävalenz gestörten Essverhaltens bei Typ 1 Diabetes im Kindes- und Jugendalter: Erfassungsmöglichkeiten und Vergleich mit gesunden Gleichaltrigen – Ergebnisse einer multizentrischen Fragebogenstudie. PPmP - Psychotherapie · Psychosomatik · Medizinische Psychologie, 66(03/04), pp.128-135. Huxley, R., Peters, S., Mishra, G. and Woodward, M. (2015). Risk of all-cause mortality and vascular events in women versus men with type 1 diabetes: a systematic review and meta-analysis. The Lancet Diabetes & Endocrinology, 3(3), pp.198-206. Jewell, T., Blessitt, E., Stewart, C., Simic, M. and Eisler, I. (2016). Family Therapy for Child and Adolescent Eating Disorders: A Critical Review. Family Process, 55(3), pp.577-594. Lennerz, B., Barton, A., Bernstein, R., Dikeman, R., Diulus, C., Hallberg, S., Rhodes, E., Ebbeling, C., Westman, E., Yancy, W. and Ludwig, D. (2018). Management of Type 1 Diabetes With a Very Low–Carbohydrate Diet. Pediatrics, 141(6), p.e20173349. Macdonald, P., Kan, C., Stadler, M., De Bernier, G., Hadjimichalis, A., Le Coguic, A., Allan, J., Ismail, K. and Treasure, J. (2017). Eating disorders in people with Type 1 diabetes: experiential perspectives of both clients and healthcare professionals. Diabetic Medicine, 35(2), pp.223-231. Metro.co.uk. (2017). Diabulimia is the 'most dangerous eating disorder' most of us have never heard of | Metro News. [online] Available at: http://metro.co.uk/2017/09/24/diabulimia-is-the-most-dangerous-eating-disorder-most-of-us- have-never-heard-of-6951981/ [Accessed 30 Dec. 2017]. Moreira, H., Frontini, R., Bullinger, M. and Canavarro, M. (2013). Caring for a child with Type 1 diabetes: Links between family cohesion, perceived impact, and parental adjustment.
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