When allowed to become ingrained, eating disorders can dominate a person’s life, causing severe disruptions to work and education, damage to personal relationships, and lasting harm to their bodies. Of all mental illnesses, anorexia has the highest mortality rate.
Despite this, it often takes many months or even years for people with eating disorders to access treatment, even when they actively seek it. The longer they spend without being treated, the more likely they are to go through cycles of partial recovery and relapse that lasts many years.
We received this article from one of our readers. She wanted to share her personal journey into world of Eating Disorder with us. Thank you so much for this timely contribution. We wish you well on your journey to living and healing. The story highlights how sometimes a misdiagnosis can lead to dangerous late diagnosis of Eating Disorder with physical and mental health consequences. We cannot emphasis enough on how early diagnosis and treatment is crucial in eating disorders and why GPs should recognise and refer patients for prompt intervention without delays,
MY ED Journey
Almost a year ago, July 2019, I hit rock bottom. I remember sitting in the park and just wanting the pain to stop, the worrying to stop, the panic, the anger, the hurt, the guilt… I just wanted it to all stop. A roller coaster doesn’t describe the journey; at least there’s an end to a ride. Anorexia is more like an unexpected guest who keeps extending their stay. She gets too comfortable, she gets demanding and she makes you change the way you do things in your own home.
I had no idea I had an eating disorder, it was just last year that it was brought to my attention. I couldn’t ignore it. I just had to do something about it, my relationship with my family was at risk and I felt like I had to fix it before it got too late. But before I was diagnosed I remember going to the doctors many times trying to find the solution to various digestive issues, stomach aches, bloating, gas, and all sorts. I was convinced it was something more sinister when my periods stopped but I was told it was just IBS and if I get a handle of that first, the rest will fall into place. I had so many tests done, was going in and out of hospital, and went on so many diets recommended by doctors. That was when the restrictions began. Even when I didn’t need to restrict it, I still carried on because I thought it would help my IBS. I continued restricting for years, cutting out more and more from my diet which only made matters worse. I started to fear gaining weight and became obsessed with going to the gym. I avoided going out anywhere where food was the main event, my anxiety got worse and depression crept in. Throughout all of this, I still thought I was fine, and that all I was trying to do was get better and healthier, when in fact what I was doing was the complete opposite.
Last year I started to get help for my anxiety, depression and anorexia. There are moments I feel positive and stronger, but there are also moments where I feel disgusted with myself again. It’s as though I’ve kicked her out of my house but her essence still looms. I’m lucky to be able to get help and I am now so aware of the disease and how much work needs to be done to prevent it.
Further Read: Role of GP
Staging eating disorders
A key way of contextualising the need for rapid assessment and treatment stems from the pioneering work of Maguire and colleagues,5 and the development of the concept of ‘staging’ eating disorders in much the same manner as a cancer diagnosis would be staged. Under this model of thinking, eating disorders in the early stages of development should not be left to develop further, but once identified, should be treated rapidly and aggressively to maximise the chances of a positive treatment outcome. If a ‘wait and see’ approach is followed and the illness is left unchecked, even for a short time, eating disorder symptomatology can become deeply ingrained in, and allied to, the individual. This is aptly demonstrated by the ego syntonic nature of acute anorexia nervosa, in which the behaviours associated with the illness are experienced by the individual as fitting in with their ‘ideal self’.6 Once eating disorder behaviours have become ingrained within the individual, more intensive treatment is required, with the likelihood of success significantly reduced. Just as cancer is treated rapidly once it is detected, so eating disorders should be treated in the same way: in a committed and urgent fashion.
What can primary care do?
The role of the GP in early identification and referral for assessment is highly significant. Bearing in mind the ‘staging’ paradigm, it is of paramount importance to refer for assessment and treatment patients who are exhibiting signs of disordered eating, but who may not be showing full-blown symptomatology. By the time ‘obvious’ signs of eating disorders have manifested, it is likely that the illness will already have become entrenched in the patient’s psyche, and will have become much more difficult to treat.
General practitioners are almost universally the first port of call for people experiencing early symptoms, and who may often be accompanied by their parents. Because of pervasive, unhelpful ideas of what an eating disorder looks like, it is not uncommon for patients to be told that they are simply experiencing ‘a phase’, and that referral for assessment could only happen once a deterioration in physical symptoms occurred—a message typically heard by patients as, ‘you’re not ill enough’ or worryingly for those restricting their dietary intake, ‘go and lose more weight’.
The key, in fact, is to be able to identify patients early on as being at risk of deterioration, and to refer and treat proactively in a conscious effort to prevent the illness from becoming an acute condition. This approach lessens the harmful impact of an eating disorder, reduces treatment duration, and requires less intensive and expensive treatment modalities. Below are some common questions that GPs may ask themselves when faced with a patient with a possible eating disorder, along with advice about how to respond to these questions. This advice takes into account NICE Clinical Guideline (CG) 9 on Eating disorders in over 8s: management,8 as well as the experiences of service users and advice from Beat,9 the UK’s leading eating disorder charity. NICE CG9 is due to be updated in May 2017; the message on the importance of early intervention is unlikely to change. For up-to-date, practical guidance on current best practice for primary care management of people with suspected and confirmed eating disorders, see NICE Clinical Knowledge Summary on Eating Disorders.7
Does my patient have an eating disorder, and if so, what do I do?
Recommendation 184.108.40.206 of NICE CG98 suggests asking screening questions to ascertain whether a patient may be at risk of an eating disorder. One way to do this is by using the SCOFF questionnaire (see Box 1, below),7 which takes little under a minute, and demonstrates a good sensitivity to accurately identify patients who may have an eating disorder. If, however, a patient comes with concerns that they may have an eating disorder (e.g. they have described a level of disordered eating and an overemphasis on body shape or weight), there is little need to screen—their presentation indicates they may very well be developing, or have developed, an eating disorder. In this instance, immediate referral for specialist assessment is recommended; treating a disorder effectively is often a race against time and the sooner treatment is accessed, the better.10 Eating disorders are complex, multi-factorial illnesses with relatively low prevalence;11 the best course of action is to rapidly refer to a specialist who can assess the patient’s presentation and treatment needs as quickly and efficiently as possible.
Box 1: The SCOFF questionnaire7
- Do you make yourself sick because you feel uncomfortably full?
- Do you worry you have lost control over how much you eat?
- Have you recently lost more than one stone in a 3-month period?
- Do you believe yourself to be fat when others say you are too thin?
- Would you say that food dominates your life?
Two or more positive answers are suggestive of a case and indicate that further interview and examination are required.
National Institute for Health and Care Excellence (2014). Eating disorders. Clinical Knowledge Summary. Available from: cks.nice.org.uk/eating-disorders
NICE has not checked the use of its content in this article to confirm that it accurately reflects the NICE publication from which it is taken.
Should I wait and see if things get better for the patient before referring them to specialist services?
Recommendation 220.127.116.11 of NICE CG99 is clear that patients should be assessed and receive treatment at the earliest opportunity. Some patients may downplay or deny the seriousness of the problem, but if in any doubt at all, refer to a specialist and allow for that assessment to be made as expediently as possible. Denial of the seriousness of the illness can actually be a clinical indicator for anorexia,6 so prudence is the best course of action, as there can be serious long-term health consequences from any delay in the referral process.
The patient’s weight/body mass index is not dangerously low— should referral be delayed?
Again, early referral should never be delayed because of a lack of ‘physical’ evidence for a mental health problem. Weight and/or body mass index (BMI) should not be considered as the sole clinical indicators of an eating disorder (NICE CG9, recommendation 18.104.22.168).8 Indeed, low weight is not a clinical indicator at all for bulimia nervosa, binge eating disorder, or a range of the other specified feeding or eating disorder (OSFED) diagnoses. As a result, diagnostic decisions based on the absence of low weight should be avoided. Wherever possible, patients should be engaged and treated before significant weight loss has occurred (NICE CG9, recommendation 22.214.171.124).8
Who is in the best position to make an eating disorders assessment?
Eating disorders are difficult to treat, and often patients find engaging in treatment incredibly hard, especially if their illness has been given time to manifest. Because of the importance of getting them the help they need quickly, and bearing in mind the complexity of patients’ psychopathology across all eating disorder diagnoses, a healthcare professional who has the necessary competence and experience should manage these patients. It is neither in the GP’s nor the patient’s best interest to delay referral to specialist services for assessment and/or treatment.7
In 2014, the Government announced that it will be investing a further £150 million (rolled out over 5 years) to youth eating disorders services with the aim of smoothing the pathway to treatment.12
Recent research into an early intervention initiative demonstrated levels of treatment engagement and success that vindicate the push for early referrals and rapid specialist intervention.10
The importance of recognising and treating eating disorders as early and rapidly as possible cannot be understated. The evidence is clear that a person’s chances of full recovery from an eating disorder substantially increase if they are treated before their condition is allowed to progress.5
General practitioners and other medical professionals are a regular first port of call for people who are worried about their eating behaviour, and are therefore well-positioned to help people with eating disorders to access vital early treatment. Eating disorders can be very difficult to recognise (especially in the early stages) by both medical professionals and those with eating disorders themselves; however, physical symptoms can take time to appear, if they manifest at all, by which point the eating disorder may have become much more difficult to treat. It is therefore vital for healthcare professionals to move away from using physical indicators as the sole diagnostic criteria for eating disorders, or waiting to see if physical indicators develop. Instead, they can best serve the patients they suspect may have an eating disorder by referring them for assessment by specialist services as quickly as possible.
Many people have experienced first-hand the enormous damage that eating disorders can cause, yet so many people with these disorders do not recognise that there is a problem, or struggle to ask for help. By following the advice in this article, GPs can do so much to make the process of treatment and recovery easier for people with these mental illnesses.
Beat provides support for those affected by eating disorders. Information for healthcare professionals is available on the Beat website.
- Eating disorders are serious mental illnesses that affect at least 725,000 people in the UK
- Early intervention is a critical element in the success of treatment for eating disorders
- The role of the GP and other healthcare professionals in early identification and referral for assessment is highly significant
- By the time ‘obvious’ signs of eating disorders have manifested, it is likely that the illness will have become ingrained in the individual, and therefore much more difficult to treat
- The key is to be able to identify patients early on as being at risk of deterioration, and to refer and treat proactively
- Rather than using weight criteria, or waiting to see if physical symptoms develop, GPs should screen using a tool like the SCOFF questionnaire, which demonstrates a good sensitivity to accurately identify patients who may have an eating disorder
- Where an eating disorder is suspected, immediate referral for specialist assessment is recommended.
GP commissioning messages
written by Dr David Jenner, GP, Cullompton, Devon
- The prevalence of eating disorders is low, but anorexia nervosa in particular carries significant morbidity and mortality so early identification is important
- should ensure there are local referral pathways in place that allow rapid response and referral for people with suspected eating disorders
- could consider awareness training for primary care staff, and possibly for school nurses and teachers
- Referral guidelines for these services could include simple screening tests like the SCOFF questionnaire
- Eating disorders often develop in adolescence, so it is important for commissioners to ensure that there is no ‘drop off’ in the transition of care between children and adult services.
- Beat. The costs of eating disorders: social, health and economic impacts. PricewaterhouseCoopers, 2015. Available at: www.beat.co.uk/assets/000/000/302/The_costs_of_eating_disorders_Final_original.pdf
- Bamford B, Sly R. Exploring quality of life in the eating disorders. Eur Eat Disord Rev 2010; 18 (2): 147–153.
- Arcelus J, Mitchell A, Wales J, Nielsen S. Mortality rates in patients with anorexia nervosa and other eating disorders. A metaanalysis of 36 studies. Arch Gen Psychiatry 2011; 68 (7): 724–731.
- Treasure J, Russell G. The case for early intervention in anorexia nervosa: theoretical exploration of maintaining factors. Br J Psychiatry 2011; 199 (1): 5–7.
- Maguire S, Le Grange D, Surgenor L et al. Staging anorexia nervosa: conceptualizing illness severity. Early Interv Psychiatry 2008; 2 (1): 3–10.
- Vitousek K, Watson S, Wilson G. Enhancing motivation to change in treatment resistant eating disorders. Clin Psychol Rev 1998; 18 (4): 391–420.
- NICE. Clinical Knowledge Summaries. Eating disorders. NICE, 2014. Available at: cks.nice.org.uk/eating-disorders (accessed 4 November 2016).
- NICE. Eating disorders in over 8s: management. NICE Clinical Guideline 9. NICE, 2004. Available at: www.nice.org.uk/cg9
- Beat. www.b-eat.co.uk (accessed 10 November 2016).
- Brown A, McClelland J, Boysen E et al. The FREED Project (first episode and rapid early intervention in eating disorders): service model, feasibility and acceptability. Early Interv Psychiatry, 2016; doi: 10.1111/eip.12382.
- Milos G, Spinder A, Schnyder U, Fairburn C. Instability of eating disorder diagnoses: prospective study. Br J Psychiatry 2005; 187 (6): 573–578.
- Hudson J, Hiripi E, Pope H, Kessler R. The prevalence and correlates of eating disorders in the national Comorbidity Survey Replication. Biological Psychiatry 2007; 61 (3): 348–358.
- Deputy Prime Minister’s Office, Department of Health. Deputy PM announces £150m investment to transform treatment for eating disorders. Available at: www.gov.uk/government/news/deputy-pm-announces-150m-investment-to-transform-treatment-for-eating-disorders (accessed 3 November 2016).G