Key learning points:
- Key indicators of an eating disorder include weight changes, avoiding eating with others, and wearing baggy clothes
- Be aware of the language you use in patients with eating disorders – telling someone they ‘look well’ can be interpreted as looking fat
- A patient does not have to be really thin to be suffering from an eating disorder. Weight loss is not the only symptom in anorexia
Anorexia nervosa has the highest mortality rate of any psychiatric illness, either through the physical health complications or suicide.1 While an eating disorder can become a very dangerous and life-threatening illness, early intervention can result in the best possible recovery outcome.2
Anorexia, bulimia and binge eating disorder are the three most common eating disorders, although there are many others, identified as other specified feeding or eating disorders (OSFED, previously EDNOS) and avoidant restrictive food intake disorder (ARFID). It is also increasingly recognised that many people with diabetes also struggle with an eating disorder and that serious health complications can occur with the misuse of insulin. The practice of reducing or omitting insulin in order to lose weight is known as ‘diabulimia’.3
Historically, anorexia has often been unhelpfully referred to as a ‘slimmer’s disease affecting young women’, however, the Personalised Eating Disorder Support charity is working hard to help people understand that anorexia is rarely just about weight and shape. Also, many men are affected by eating disorders, as are older women who may previously not have wanted to come forward. New research from University College London suggests around 3% of women in their 40s and 50s have an active eating disorder.4 Pregnant women can also be affected by eating disorders and it is important that support is offered before, during and after pregnancy, especially where there are anxieties about changing body shapes.
Prevention, creating healthy role models and being aware of the effect social media has on an individual’s body image and self-esteem can be hugely beneficial when trying to understand eating disorders. There is no one known cause of eating disorders. However, there are a number of factors that can make a person more predisposed to developing an eating disorder. These include: previous dieting behaviours, having a family member with a history of an eating disorder, placing a lot of pressure on oneself (perfectionist traits), having a comorbidity such as anxiety, OCD, depression or a personality disorder, and suffering from long-term conditions such as chronic fatigue, diabetes, Crohn’s, and coeliac disease.
Early intervention is crucial and this involves being aware of key indicators such as:
- Presenting with another physical health problem eg missed periods or dizziness.
- Digestive problems.
- Withdrawn, isolative behaviours.
- Weight changes.
- Wearing of baggy clothes.
- Avoiding meal times or eating with people.
- Becoming rigid in relation to what and how they eat – eg new rules about times, cutlery or food groups.
- Increased interest in what others are eating – it is very common for a person to take great delight in watching others eat plenty when they deny themselves.
- Compensatory behaviours such as restricted eating, excessive exercising, purging with laxatives, diuretics, slimming pills or vomiting.
ABCD screening tool
- Does eating cause Anxiety?
- Are you unhappy with your Body?
- Do you try to Control your weight by restricting, purging or over-exercising?
- Do you feel your life is currently Dictated by thoughts of food?
A quick tool that I have developed, the ABCD, may be useful for professionals. Two or more ‘yes’ answers indicate that further eating disorder screening is required. But this is still in the research phase.
The 2017 NICE guidelines highlight the importance of being supported by professional teams experienced in eating disorders. Historically, eating disorders were managed in generic settings by child and adolescent mental health services (CAMHS) and community mental health teams.2 Family therapy has proved an effective evidence-based treatment, particularly for young people with eating disorders. Both children and adults benefit from family involvement and carer support. For adults, enhanced CBT, Maudsley Model of Anorexia Treatment for Adults (MANTRA) and specialist supportive clinical management are suggested treatments. Perhaps the most important factor in any treatment is the therapeutic relationship between the patient and the professional. Patients and family members regularly comment that these two factors (meal plans and relationships built upon trust) are hugely important in initiating the steps towards stabilisation or recovery. More research is required to investigate the importance of establishing an agreed nutritional plan at the earliest opportunity.
A girl aged 16 goes to see her school nurse in September. She has been making herself sick over the summer holidays and has become scared of eating regular meals, choosing to snack on safe foods in secret and avoid eating with her family.
- Acknowledge her courage in coming forward for help.
- Support her to access the right help, encouraging her to see her GP.
- Advise her that vomiting is dangerous and can affect sodium and potassium levels, which can affect cardiac functioning and cause oedema. Vomiting also affects tooth enamel and the oesophagus and can cause bleeding.
- Useful guidelines for medical monitoring can be downloaded from Kings Medical Guidelines for Eating Disorders and Junior MARSIPAN.5,6
- Try to identify why she is being sick. Is she anxious? Is she trying to lose or control weight? Does she have any physical health issues such as phobias?
- Suggest that she speaks to her parents, keeping her engaged to build trust.
- Set up a weekly review to assess risk and monitor her condition. Agree who is responsible for monitoring weight – the school nurse or GP – and how this will be communicated between agencies.
- Be aware of consent, capacity and confidentiality issues.
- Refer to the local CAMHS.
- Ask what she would find helpful – perhaps support from a special educational needs co-ordinator or pastoral officer.
- Ask if she is struggling with school work. Is eating in front of peers overwhelming and how could a plan of care be made to support nutritional intake and reduce anxieties?
- Be aware of the language you use. For example, avoid commenting on weight or telling her she is ‘looking well’ as people with eating disorders often interpret this as looking fat.
A male aged 20 contacts his surgery after losing his job on a building site because of poor performance and lack of motivation and concentration. He has had depression since the age of 17. Aged 18, he was diagnosed with anorexia, which he had controlled until two months ago when he started bingeing and purging daily.
- Highlight his bravery in being open and coming forward for help as this can be particularly difficult for males.
- Review baseline bloods, ECG, weight, blood pressure and pulse. Monitor these regularly.
- Refer to the local adult eating disorder NHS team.
- Encourage self-help support in the interim – such as the national eating disorders charity BEAT, the mental health charity MIND and the Men Get Eating Disorders Too website (see resources online).
- Emphasise that he has previously worked hard to manage his symptoms for two years and kept stable. Try to identify what has helped him get back on track in the past.
- Monitor and treat his depression.
A lady aged 64 self-referred to a local eating disorder charity because her family is worried about her. She had suffered from anorexia since the age of 30 and though she worked hard to stabilise over the years, she has now noticed her physical health suffering in the past six months. She is constantly cold, her circulation has worsened, she has anaemia and she finds she is very rigid in relation to her eating disorder behaviours.
- Encourage her to visit her GP if she is not being monitored regularly.
- Offer her and her family support. Joint sessions may be helpful in identifying short-term goals and aims.
- Emphasize that the expectation is not to suddenly make a full recovery and gain weight. Indeed, this may be scary and cause the patient to disengage. Agree goals – for example to prevent further deterioration.
- Refer her to the local NHS adult eating disorder team.
- Suggest helpful books for the family, such as Skills-Based Caring for A Loved One With An Eating Disorder.7
- Suggest sources of online support, and local groups.
- Highlight the importance of hope and emphasise the lady’s positive step in seeking help.
Myths and misunderstandings
- People with eating disorders are attention seekers – Completely the opposite is true. In most cases, people with eating disorders want to hide from the world and be left alone.
- People with anorexia just don’t like food – Most people with anorexia love food, but have become fearful of normal eating. They often restrict themselves to the point where they struggle to identify hunger.
- Eating disorders are just about wanting to be thin – For many sufferers, it is not about their weight. It is a symptom of their unhappiness and a desire to feel in control of something.
- You have to be really thin to be suffering from an eating disorder – While weight loss is one of the indicators in anorexia, it is not the only symptom. Very often the sufferer may be told they are a healthy weight. This is unhelpful and dangerous if someone has started as overweight and lost a large amount in a short period, resulting in a healthy BMI even though they are very unwell. Many people with bulimia are of a healthy weight on paper but their thought patterns and behaviours put them at risk physically and mentally.
- Eating after 7pm is bad for your health – While eating just before going to sleep might make you feel uncomfortable, it does not make you gain weight. The time you eat your evening meal doesn’t matter. What matters is the calories consumed over a 24-hour period.
- Over-exercisers should be told to stop – While it may seem appropriate to advise someone with an eating disorder and exercise issues to stop, most people find this approach unhelpful and will continue their behaviours in secret. It is often more helpful to agree a controlled plan with an open and honest approach with appropriate medical monitoring. The LEAP programme8 has been identified as a model for working with people who cannot stop exercising and is an example of putting the patient at the centre of their care.
The importance of holistic care that is patient focused and includes families and carers cannot be underestimated. And support needs to continue. All too often it is assumed that once a patient has restored weight and can eat normally again, they are well enough to no longer require support. In many cases, the eating disorder has affected every aspect of the individual’s life. There are often issues related to low confidence, difficulty socialising with friends, re-engaging in education, employment or hobbies. Learning to find one’s identify again when for so long they have been overshadowed by the eating disorder is often a challenge.
For those whose eating disorder has become chronic, it can be helpful to have an agreed plan of care for periods of crisis or relapse. This has been especially helpful in cases where people say one thing but mean another. For example, when someone tells their care co-ordinator to stop coming. What they often mean is that they are scared of being weighed or having to make changes and their eating disorder is telling them to keep the help at a distance when really they want the support.
As a mental health nurse who has had a specialist interest in eating disorders for the last 14 years (and personal experience after two lengthy hospital admissions for anorexia as a teenager), I have learned that the most important thing is how vital collaborative care is between the patient, the GP, secondary services and the individual’s wider network of family, educational establishment of employer. A key message is also to emphasise that there is always hope, no matter how long a person has been ill.
It is important to work with the patient’s goals and understand that recovery has different meanings for each individual. It might be full recovery or learning to manage symptoms to improve quality of life. There are occasions when a sufferer will tell you they do not want to get better. This can be hard for the professional to accept and even harder for the family, but it is important to always have hope.
A severe and enduring eating disorder often provides the sufferer with a sense of achievement and control and they may not be ready or willing to give it up. In these circumstances, it is important to focus on what the patient can manage, which might be an agreement on support to stabilise, but be aware that pushing can be unhelpful. It is very interesting to hear how many patients say ‘no’ when asked the following question: ‘if you had a magic bean that would make the eating disorder disappear, would you take it’, but many will say it has become their security blanket. In reality it is destroying their life and often those of their loved ones.
Talking therapies such as specialist CBT and self-help programmes can be useful in helping the patient understand how their thoughts affect their behaviours.9
A recent document published by the Parliamentary and Health Service Ombudsman highlights the need to address the following issues to improve services:10
- More provision of child eating disorder services.11
- Better GP and junior medic training and more eating disorder specialists trained.
- More collaboration in the new NICE quality standard for eating disorders.
Mandy Scott is a founder of the Personalised Eating Disorder Support (PEDS) charity and a registered mental health nurse
1 Smink F, van Hoeken D, Hoek H. Epidemiology of eating disorders: incidence, prevalence and mortality rates. Current Psychiatry Reports 2012;14:406-14
2 NICE. Eating Disorders Recognition and Treatment. London; NICE:2017 nice.org.uk/guidance/ng69/chapter/Recommendations
3 Diabetes UK, 2017diabetes.org.uk/guide-to-diabetes/life-with-diabetes/diabulimia
4 Micali N, Martini M, Thomas J et al. Lifetime and 12-month prevalence of eating disorders amongst women in mid-life:
a population-based study of diagnoses and risk factors, BMC Medicine 2017 biomedcentral.com/about/ press-centre/science -press-releases/17-01-17
5 Treasure J. Kings Guide for Eating Disorders 2009 kcl.ac.uk/ ioppn/depts/pm/research/eatingdisorders/resources/GUIDETOMEDICAL RISKASSESSMENT.pdf
6 Royal College of Psychiatrists. MARSIPAN, Management of Really Sick Patients With Anorexia 2014, rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr189.aspx
7 Treasure J. Skills-Based Caring for A Loved One With An Eating Disorder, The New Maudsley Method, 2016
8 LEAP – Loughborough Eating disorders Activity therapy lboro.ac.uk/service/publicity/news-releases/2010/29_ LEAP.html
9 NICE People with eating disorders benefit from specialist CBT and self-help programmes. nice.org.uk/news/article/people-with-eating-disorders-benefit-from-specialist-cbt-and-self-help-programmes-says-nice
10 Parliamentary and Health Service Ombudsman. Ignoring the alarms: How NHS eating disorder services are failing patients. 2017 ombudsman.org.uk/sites/default/files/page/FINAL%20FOR%20WEB%20Anorexia%20Report.pdf
11 NHS England. Access and Waiting Time Standard for Children and Young People with an Eating Disorder, Commissioning Guide, 2015 england.nhs.uk/wp-content/uploads/2015/07/cyp-eating -disorders-access-waiting-time-standard-comm-guid.pdf
- BEAT national eating disorder charity beateatingdisorders.org.uk
- Diabetes With Eating Disorders (DWED) charity dwed.org.uk
- Men Get Eating Disorders Too (MGEDT) charity mengetedstoo.co.uk
- NICE guidelines eating disorders May 2017 nice.org.uk/guidance/ng69
- Adult and children guidelines for Management of Really Sick Children & Adults with Anorexia (MARSIPAN) rcpsych.ac.uk/files/pdfversion/CR162.pdf & rcpsych.ac.uk/files/pdfversion/CR168nov14.pdf http://rcpsych.ac.uk/pdf/CR189checklistXX.pdf
- Kings medical guidelines for adults with eating disorders kcl.ac.uk/ioppn/depts/pm/research/eatingdisorders/resources/GUIDETOMEDICALRISK ASSESSMENT.pdf
- Personalised Eating Disorder Support (PEDS) charity pedsupport.co.uk
- CARALINE eating disorder charity based in Luton and Bedfordshire caraline.com
- SEED eating disorder charity based in Hull seedeatingdisorders.org.uk
- First Steps Derbyshire eating disorder charity firststepsed.co.uk/anorexia
- Anorexia Bulimia Care (ABC) charity anorexiabulimiacare.org.uk
- ?Author? Getting Better Bite By Bite. ?publisher & year? amazon.co.uk/Getting-Better-Bite-Sufferers-Disorders/dp/1138797375
- ?Author? Overcoming Binge Eating Disorder. ?publisher & year? amazon.com/Overcoming-Binge-Eating-Second-Program/dp/1572305614/ref=pd_lpo_sbs_14_t_0?_encoding=UTF8&psc=1&refRID=XZEZPZ7DPDTFKKVTDFSC
- Centre Clinical Interventions Western Australia. Workbooks and Factsheets for Eating Disorders cci.health.wa.gov.au/resources/minipax.cfm?mini_ID=19
- Royal College of Psychiatry. Eating Disorders Literature rcpsych.ac.uk/mentalhealthinfoforall/problems/eatingdisorders/eatingdisorders.aspx