The parent’s part in eating disorders diagnosis

Find out how eating disorders are diagnosed, the pitfalls you can guard against, and get tips on how to get expert care without delay.

This is the whole of Chapter 3 of ‘Anorexia and other eating disorders – how to help your child eat well and be well’. Early intervention is best, so I want my readers to have access to this right away.

Eating disorder or ‘just’ disordered eating?

If you’re already getting specialist care and you’re satisfied with your child’s diagnosis, feel free to skip this entire chapter. My aim here is to urge parents to look for diagnosis and treatment without delay if they are worried that their child may have an eating disorder. That’s because they’re usually right.

When, at the more extreme end of anorexia and starvation, a child becomes scared of swallowing her own saliva, when she thinks smelling food or having a shower or putting cream on her skin might make her fat, you know this has nothing to do with a faddy diet. In the early days, though, we wonder if our child ‘just’ has disordered eating and body dissatisfaction – which are so common that we tend to accept them as normal.[i]

With disordered eating, people eat and exercise erratically. They want to lose weight, they try and fail at all kinds of diets, only eat in the evenings, fast (‘for health’ or weight loss), occasionally binge, vomit or use diet pills, exclude particular food groups, and become fascinated with detox, ‘clean’ and ‘healthy’ eating, ‘biohacking’ or extreme muscularity. Disordered eating, for some, signals the early (‘prodromal’) stage of an eating disorder. Intervene now, and you will find it relatively easy to bring your child back to stability before they have a diagnosable illness.[ii] If your child ‘just’ has disordered eating, you won’t be ‘giving’ him an eating disorder by supporting him to eat regular meals. On the contrary, you will be relieving him of his present misery, and teaching lifelong habits for happiness and wellbeing.

I know how parents hesitate to ‘make a fuss’. Even when they suspect the illness is there, they are scared of being heavy-handed. They hope the problem will sort itself out without intervention, and indeed, that can happen. The problem is that nobody can predict if your child will be in that category. In addition, it could take quite a few miserable years for this spontaneous recovery to take place. Then there’s the issue that without treatment, some people get a little better but don’t fully recover. The risks are just too high. Start treatment.[iii]

So what signs should be ringing alarm bells? First of all, a child or adolescent losing weight, or not gaining weight. That is never OK. Notice also if your child is eating very slowly, fastidiously, using small plates, small spoons. Questioning quantities and ingredients. Cutting out major food groups. Fasting ‘for health’. Becoming obsessed with cooking… for others. Commenting on body shape – theirs and others’. Exercising compulsively. Low mood and irritability.

A person with disordered eating will enjoy a feast with friends, while tutting, ‘I really shouldn’t! Oh, go on, the diet starts tomorrow!’ With an eating disorder, the person is truly anxious, and they restrict or purge afterwards. When the illness is advanced, they might choose a small salad and make it last through starter, meal and dessert. Later they stop meeting friends, partly because it means eating, and partly because their state of anxiety closes them off from others.

Our children are adept at hiding signs. At first, they secretly cut out lunch in school. Then they tell us they’ve eaten with friends, so they don’t need dinner with us. They get passionate about ‘healthy’ eating and exercise. We yo-yo between worry and reassurance. We’re relieved that last night they happily tucked into several slices of pizza. Later we learn that the reason they allowed themselves pizza is that they skipped lunch.

There are, of course, physical signs that the body is reacting to malnourishment: thinning hair, cold hands, sore tummy, constipation, fur on the face. For those who vomit, there are specific signs as well. For lots more indicators of an eating disorder, check the endnotes.[iv]

Here’s a tip. Take your child on holiday for a couple of days. If they have an eating disorder, you will see their tension rise as they try to restrict while acting normal. You will see how long it takes them to choose food off a menu. They may argue that as you both had ice-cream on the beach, you don’t need dinner, and wouldn’t it be nice to go for a run instead. The busiest time for referrals to eating disorder services is after holidays.

Getting a referral for diagnosis and treatment

The best standard has treatment start within one week of parents first consulting health services about a possible eating disorder. In England, for instance, there is system of self-referral directly to the local specialist team.[v] That’s because it really pays off to treat early, while symptoms are still relatively minor.

What most parents[vi] still face all over the world is the requirement to go to their family doctor, who is unlikely to have the competence to diagnose and who may not appreciate the value of early specialist intervention. In some regions, even when family doctors act swiftly, there is a long waiting list for mental health services. As Dr Rebecka Peebles says in an excellent conference video for parents and doctors, if you consulted your doctor about Stage 1 cancer, you wouldn’t expect to be told to wait till it’s progressed to Stage 2.[vii]

There are many physical effects of malnourishment and of purging, which a doctor –ideally specialised in eating disorders – should check for. I’ll mention just one important nugget from a favourite expert, Dr Jennifer Gaudiani:[viii] a person can be underweight and underfed, but if they’re not purging they are likely to have normal blood tests. And it’s not uncommon for menstruation to continue.

The worst-case scenario is when a parent is disbelieved and branded as over-anxious or even harmful. In this section I want to help you prepare for your first visit to a doctor or specialist, so that you get what you need even if it turns out the person you’re consulting doesn’t have the required expertise.

When I started reading books on eating disorders, I skipped the bits that shouted, take your child to a doctor! I wanted to read only about what we could do, as parents. We had a completely unscientific notion that ‘medicalising’ our child – having her labelled with an eating disorder – could give her an illness she might not have. Perhaps this was just a phase, we thought. When at last I consulted the family doctor on my own, five months had passed since the trigger that had made our daughter decide to cut down on sweets. Only two months before that first appointment, I’d noted in my diary that I was ‘sometimes concerned’ that she was hardly touching her lunch. Rapid deterioration may be a characteristic of anorexia in young children and that’s what happened in our daughter’s case. Each day seemed twice as bad as the previous one. Suddenly we became desperate to have specialist help, very urgently.

Our doctor recognised the signs and symptoms I described and immediately wrote a referral to Child and Adolescent Mental Health Services (CAMHS). There were delays due to administrative hiccups. We were given the surreal news that the waiting list was 12 months. I was frequently on the phone to the CAMHS receptionist to report on my daughter’s worsening condition. Our struggling health service works best for those who have the education and assertiveness to push, and within two and a half weeks, we were sitting in our first session with a CAMHS nurse.

What are the main eating disorders?

A family doctor’s job is not to diagnose but to refer you to a specialist who is competent to make a diagnosis. There are hotly debated criteria to diagnose eating disorders. In most countries, diagnosis is informed by one or both of these main sources: ICD from the World Health Organisation (WHO),^[ix] and the more up to date DSM-5 from the American Psychiatric Association.^[x]

Binge-eating disorder is characterised by recurring episodes of eating unusually large amounts of food (significantly more, in a short period of time, than most people would eat under similar circumstances), during which the person feels they have no control over their eating. Sufferers are highly distressed and are often full of guilt and shame about their binges, which happen on average at least once a week. They may go for hours or days with little or no food, battling hunger, recruiting extreme willpower, planning weight loss in great detail. If so, they could be malnourished, with medical risks just as serious as those of an underweight person.

In bulimia nervosa, the same criteria as for binge-eating disorder are used, and there can be just as much yo-yoing of feast and famine, but in addition there are inappropriate compensatory behaviours (purging). These could be fasting and excessive exercise but most often purging means vomiting or use of laxatives, diuretics or diet pills. The danger from these is particularly acute and regular medical checks are needed.[xi]

The criteria for anorexia nervosa – both restricting anorexia and binge-purge anorexia – are:

• calorific restriction resulting in significantly low body weight
• intense fear of gaining weight or becoming fat, even though underweight, or persistent behaviours that prevent weight gain, even though at a significantly low weight
• disturbance in the way in which one’s body weight or shape is experienced, undue influence of body weight or shape on self-evaluation, or persistent lackof recognition of the seriousness of the current low body weight

If someone meets these three criteria and also regularly binges and purges, then the diagnosis is binge-purge anorexia, not bulimia. Bulimia doesn’t have the long-term weight suppression: most patients have a normal or higher than normal body weight. They may sometimes fast for a day or two but their brain is not so strongly affected by malnourishment. As a result people suffering from bulimia can usually participate in their treatment in a way that isn’t possible with starving anorexia patients.

There are also classifications for rumination disorder, pica, and avoidant/restrictive food intake disorder (ARFID). ARFID is a common eating disorder, often affecting people since young childhood, which covers quite a range of difficulties and causes. There may be a lack of hunger, or extreme picky eating. There may be sensory difficulties, where children cannot tolerate certain textures. Some only eat a very few bland (‘beige’) foods. Some have a phobia following a choking incident or a fear of vomiting (emetophobia). Treatment for ARFID needs to be individualised, and may be quite different from what you read in this book.

More on my website on ARFID: anorexiafamily.com/classification-eating-disorders/#arfid

OSFED (other specified feeding or eating disorder) is the most common of all eating disorders diagnoses. It is often just as serious as the other disorders and should be treated just as swiftly. When someone shows has all of the symptoms used to diagnose anorexia, bulimia or binge-eating disorder, they may get the OSFED diagnosis. The most common subcategory of OSFED is atypical anorexia nervosa,[xii] for those who are not considered to have ‘significantly low weight’ (presumably as read off a BMI chart)[xiii], even though they might have suffered the same dangerous weight loss as someone diagnosed with anorexia. (The harmful implication is that they are not as ill.)[xiv] For bulimia or binge-eating disorder, OSFED includes version with ‘low frequency and/or limited duration’. The recommended OSFED treatment is normally the one suitable to the most similar illness.[xv] In this book, when I mention anorexia, bulimia or binge-eating disorder, please assume I am also referring to their OSFED version.

UFED (unspecified feeding or eating disorder) is often used when there is insufficient information to make a more specific diagnosis.

You may come across eating disorders not otherwise specified (EDNOS). This classification was used in the previous manual, DSM-IV. Many patients who were in this category would now be diagnosed as having anorexia, bulimia or OSFED.

Some conditions seem to have all the main elements of a diagnosable eating disorders but are not presently classified as such. Some symptoms may put them in the OSFED category. Diabetes organisations report a common and dangerous disorder, diabulimia, suffered by people with Type 1 diabetes who restrict their insulin dose to manipulate their weight.

Many youngsters are affected by misinformed and dangerous preoccupations with health or fitness. ‘Bigorexia’ or ‘reverse anorexia’, or an obsession with muscularity. They may also perceive themselves as puny (muscle dysmorphia).[xvi] A great number of boys are somewhere along a spectrum of disordered eating in order to bulk up.[xvii] At the worst end, they suffer from a compulsion to gain muscle weight regardless of the health and social cost, and they put their bodies through dangerous cycles of ‘bulking’ and ‘cutting’. They only want to eat protein, they think of food only as ‘fuel’ and can become very ill from malnourishment and insufficient body fat. Some are at extra risk from the use of supplements[xviii] or anabolic steroids.

Another common phenomenon is orthorexia, an obsessive rigidity around eating ‘healthy’, ‘clean’, ‘pure’ or organic. It may involve cutting out entire food groups. As restrictions become more rigid, orthorexia can morph into anorexia. Either way, malnourishment and an obsessive mindset make it miserable or dangerous.[xix]

There is also drunkorexia, where an alcohol drinker regularly restricts food as a way to control calories, or to become drunk faster.

‘Not thin enough’?

If your child has lost considerable weight or is purging regularly, make sure a doctor tests for acute medical problems. Some youngsters started off at a relatively high weight, shed a lot of weight dangerously fast, and then been praised for ‘looking great’ or for being ‘healthy’. The risks come from the extent of weight loss, not whether a BMI is the ‘underweight’ category on a chart.[xx] (More on weight in Chapter 6.) According to the UK’s Royal College of Psychiatrists:

“Young children and pre-pubescent adolescents may present without the typical features (e.g. absent periods or significantly low body mass index (BMI)) found in adults, and the behaviours associated with eating disorders are often covert […] The most medically compromised patients can have a normal weight.”[xxi]

Your child may not get an anorexia diagnosis if their BMI doesn’t tick the ‘significantly low body weight’ box:

“The doctor said, ‘Your son doesn’t have anorexia because his BMI isn’t low enough.’”

This ought not make any difference, as the diagnosis is then ‘atypical’ anorexia nervosa, which must be treated with just as much vigour. In practice, too many youngsters get worse because a clinician doesn’t consider them ‘underweight’. Sometimes parents need to make it clear that a ‘normal’ weight does not mean all is well: they have already worked hard at refeeding their child, or they are following best practice by requesting early intervention.

How bizarre is your child’s eating disorder?

Do you believe your child’s symptoms are so weird that surely some other illness is present? If you push for medical investigations, make sure you also attend to the urgency of getting your child to manage regular meals and regain lost weight. Be wary of ‘Dr Google’, as it will show you syndromes with symptoms that are actually ‘normal’ in many children suffering from anorexia and malnutrition. For instance some of our children are afraid of swallowing their own saliva. Or they have an unbearable compulsion to keep moving. Or they hear voices. And then many of our children have a background of anxiety, trauma, depression OCD, ADHD or autism.

More on my website:

Bizarre yet normal eating disorder symptoms[xxii]

About PANS or PANDAS[xxiii]

What to tell the doctor to get help fast

I would recommend you do a little homework before your first visit to a doctor. Your doctor may need more than vague impressions to make a referral or diagnosis. And in some countries, like mine, they need to allocate spending responsibly. Also, you don’t yet know how knowledgeable your doctor is. If your child is very young or is a boy or isn’t very thin, there is a risk that an eating disorder will be dismissed out of hand.

What do I mean by homework? I mean preparing a list of symptoms, accompanied by facts and a few well-chosen anecdotes to illustrate your points. If all you tell your doctor is ‘My son is hardly eating’, you’re dependent on your doctor’s skills to draw pertinent information out of you. It’s more helpful to say, ‘Yesterday all he ate was such and such and all he drank was such and such. When I asked him to eat more he said, “$%#!$%!”’

Here’s a list to help you prepare for your appointment. The examples relate to an eating disorder that has probably been going on for weeks or months. If your child’s symptoms are milder, get him treatment before he gets to this stage:

• What your child ate and drank yesterday / this week.
• Foods your child now refuses.
• The exercise he takes. Give figures for the last week or month.
• The kind of things he thinks and talks about (‘Yesterday he asked if he was fat 15 times’).
• Any physical changes: weight loss, sunken eyes, dry skin, cold hands, hair loss, fine hairs on the face or body, changes in the menstrual cycle.
• Psychological changes, mood, behaviours, including any obsessions or compulsions and any self-harm. If he pinches at invisible flesh on his tummy, demonstrate it. If your child weighs himself repeatedly, say so. Also say if your child has been lying, hiding food, secretly exercising or trying to make himself sick. Describe how he resists when you try to feed him.
• If your child vomits or uses laxatives or diuretics or diet pills, flag that up, as your doctor should begin monitoring your child without delay, whether or not he’s underweight.
• And finally, tell your doctor that you guess, from all the research you’ve done, that your child has an eating disorder and that you need some help urgently.

Consider making the first visit to the family doctor alone so that you can talk freely and with precision. If you take your child with you, be aware that he may put on a great show of being well and may lie about how little he eats or how much he exercises. If a doctor isn’t aware of the extent to which an eating disorder can lead normally honest people to lie, you may be the one who’s disbelieved.

Sadly there are cases of a family doctor or a psychiatrist concentrating on anxiety or obsessive-compulsive disorder (OCD) symptoms when the most urgent, life-threatening matter is an eating disorder.

If you’re dealing with clinicians whose competence and expertise you’re uncertain about, my tip is to concentrate on the types of symptoms I’ve listed above. For instance, it’s not appropriate for clinicians to question you about your own – possibly traumatic – past, or to ask if you breastfed or had postnatal depression. Don’t let them dig around for ‘root causes’ in your child’s early years: this information is not relevant to diagnosis, and in the wrong hands, may land your kid with individual psychotherapy instead of specialised eating disorder treatment.

If you disagree with your family doctor, insist on an urgent referral to a specialist. If your disagreement is with a specialist, in my country the procedure is to ask your family doctor to refer you to another specialist for a second opinion. I know of families for whom this hasn’t been straightforward: if this happens in your case, get an advisory body to inform you of your rights[xxiv], and use all your networking skills to make contact with parent advocates, eating disorders specialists, paediatricians, or psychiatrists who can open doors for you when your current treatment providers are putting up barriers.

If for some reason you want to bypass your family doctor, find out who else, in your country, can do a referral. In England, for instance, you can self-refer.[xxv]

Remember, if a parent thinks their child has an eating disorder, they’re most probably right. We parents know how dramatically our child has changed and how odd their behaviours have become: our task is for us to convey this to the gatekeepers.

It is accepted good practice for parents to be included in the consultation to assess a child with a suspected eating disorder. If you feel that clinicians are failing to diagnose competently, be aware that the gold standard is the Child Eating Disorders Examination Interview (Ch EDE I).[xxvi] I never noticed it being used with my daughter.

I want to offer you one more tip in case you’re having trouble being believed. Switch on the audio or video recorder on your phone while your child is acting in highly symptomatic ways. I’m not sure how ethical this seems to you, but if your purpose is to save your child’s life, you can’t go too wrong.

What you don’t want your child to hear from a doctor

I’m glad I consulted our doctor alone the first time because it allowed me to describe my child’s moods and behaviours freely.

I also needed to know that the doctor wouldn’t make unhelpful comments in front of my daughter. I needn’t have worried, but I believe it’s a valid precaution. I’ve heard of clinicians saying, ‘You’re nice and slim!’ or ‘We all need to reduce how much fat we eat,’ or ‘At your age, no one wants their mum or dad telling them what to eat!’ And the one I really dreaded for my innocent ten-year-old: ‘So, tell me, do you make yourself vomit? Has that ever occurred to you?’

If you do consult on your own, you’ll probably need to return to get your child’s health checked. If your child doesn’t already know his weight, I recommend that you to keep it that way. Ask for your kid to stand on the scales facing backwards. Later, when you speak to a specialist, you can discuss whether to go for open or blind weighing, but for now, your life will be much, much easier if your child doesn’t make today’s weight his upper limit.

“My daughter’s issue was that she couldn’t eat. She didn’t even think about her weight before people started weighing her and commenting on weight loss. After that, every time she learned she’d put on a fraction of a pound, it was extra hard to feed her. We had to insist on blind weighing.”

While you’re waiting for a diagnosis

If you can’t get prompt treatment, phone, write, document everything, use complaint procedures, use your local politicians and parent networks. Use accident and emergency service if you have any worries. If you’re on a waiting list, inform the clinicians if things get worse, as they are trying to prioritise.

Even when the ‘system’ is less than ideal, there is much you can do for your child right now. You can get a head start and begin your part of the treatment.

More on my website:

• My online workshops so you can get started with the essentials right away[xxvii]

• Some statistics: how common are the various types of eating disorder?[xxviii]

* Go to: Table of contents *

* Next: Chapter 4: Treatment – the essentials *

Resources to help you right now:

Endnotes

[i] A study of over 80,000 US adolescents found disordered eating behaviours among 57 per cent of young women and 31 per cent of young men. Croll, J., Neumark-Sztainer, D., Story, M. and Ireland, M. J., ‘Prevalence and risk and protective factors related to disordered eating behaviors among adolescents: relationship to gender and ethnicity’ in J Adolesc Health (August 2002), vol. 31, no. 2, pp. 166-75. http://www.ncbi.nlm.nih.gov/pubmed/12127387

[ii] Therapists Lauren Muhlheim and Therese Waterhous present two case studies in support of early intervention: ‘Can FBT Strategies be used for early eating disorder intervention and prevention?’ in letsfeast.feast-ed.org/2014/08/can-fbt-strategies-be-used-for-early.html

See also an adaptation of FBT for the ‘prodromal’ or ‘subsyndromal’ or ‘subthreshold’ stage, in ‘Family-based treatment for prodromal anorexia nervosa’, Corine Sweeney, Katharine L Loeb, Amy Parter, Lisa Hail, Nancy Zucker. In Chapter 9 in Family therapy for adolescent eating and weight disorders edited by Katharine Loeb, Daniel Le Grange and James Lock, Routledge, 2015 http://amzn.to/1NN56aF

[iii] Anorexia studies show that some people recover without treatment, and some don’t. If you do nothing, your child may be among the relatively ‘lucky’ ones: it looks as though approximately 50–70 per cent of individuals with anorexia attain a complete or moderate resolution of the illness by their early- to mid-twenties. We’re talking maybe five to seven years of illness or more. And what if your child is not in the lucky group? We have no way of predicting if, untreated, she would be part of the 30 to 50 per cent for whom anorexia becomes a severely disabling chronic or fatal illness. Kaye, W. H., Fudge, J. L. and Paulus, M., ‘New insights into symptoms and neurocircuit function of anorexia nervosa’ in Nature Reviews. Neuroscience (August 2009), vol. 10, pp 573–84. nature.com/nrn/journal/v10/n8/execsumm/nrn2682.html
Regarding the mortality statistics, there is hope in a study of women followed for 10 years after diagnosis, most of whom were doing pretty well. Mustelin et al, ‘Long‐term outcome in anorexia nervosa in the community’ in Int J Eat Disord 2015; 48:851–859, doi.org/10.1002/eat.22415

[iv] I list signs on anorexiafamily.com/school-early-detection-eating-disorder See also feedyourinstinct.com.au

[v] Access and Waiting Time Standard for Children and Young People with an Eating Disorder. Commissioning Guide from NHS England, June 2015. My summary: anorexiafamily.com/nhs-england-commissioning-guide-eating-disorders-access-waiting The whole doc: http://www.england.nhs.uk/wp-content/uploads/2015/07/cyp-eating-disorders-access-waiting-time-standard-comm-guid.pdf

[vi] In Bev Mattock’s book When Anorexia Came to Visit: Families Talk About How an Eating Disorder Invaded Their Lives(http://amzn.to/1bcKzbS), you can learn from the experiences of a number of UK parents as they navigated the health service. Our story is included.

[vii] Video of Dr Rebecka Peebles speaking at Maudsley parents’ conference on ‘Eating Disorders: What Pediatricians and Parents Should Know’, http://vimeo.com/50460378. I highly recommend this one-hour talk as I found it informative and empowering.

[viii] Dr Jennifer Gaudiani in ‘Sick enough’ (https://amzn.to/2Xa7tPR)

[ix] The International Classification of Diseases (ICD) from the World Health Organisation is due for revision and will probably use criteria similar to those in DSM-5.

[x] The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (fifth edition) is referred to – to varying degrees – in a number of countries. More detail on my website anorexiafamily.com/classification-eating-disorders

[xi] More on effects and medical checks in ‘How self-induced vomiting impacts your body’ by Pamela K. Keel. edcatalogue.com/self-induced-vomiting-impacts-body

[xii] Hay, P., Mitchison, D., Collado, AEL, González-Chica,DA, Stocks, N., Touyz, S. 'Burden and health-related quality of life of eating disorders, including Avoidant/Restrictive Food Intake Disorder (ARFID), in the Australian population' J Eat Disord. 2017 Jul 3;5:21 www.ncbi.nlm.nih.gov/pubmed/28680630

[xiii] I explain more: anorexiafamily.com/bmi-weight-for-height-wfh

[xiv] I explain more: anorexiafamily.com/weight-restoration-eating-disorder

[xv] Examples in ‘OSFED, the “other” eating disorder’ by Lauren Muhlheim verywell.com/osfed-the-other-eating-disorder-1138307

[xvi] Listen for example to The Full Bloom Project podcast fullbloomproject.com/podcast/boys

[xvii] universityofcalifornia.edu/news/22-percent-young-men-engage-disordered-eating-bulk

[xviii] Bryn Austin, 2019, pewtrusts.org/en/research-and-analysis/articles/2019/06/05/study-ties-some-dietary-supplements-to-medical-harms-in-children-young-adults

[xix] See for instance NEDA’s guide on orthorexia nationaleatingdisorders.org/learn/by-eating-disorder/other/orthorexia

[xx] ‘Restrictive Eating Disorders Among Adolescent Inpatients’, Melissa Whitelaw, Heather Gilbertson, Katherine J. Lee, Susan M. Sawyer, Pediatrics, September 2014, 134 (3) http://pediatrics.aappublications.org/content/134/3/e758

[xxi] Junior MARSIPAN: Management of Really Sick Patients under 18 with Anorexia Nervosa, report from the Junior MARSIPAN group, College Report CR168 (January 2012), Royal College of Psychiatrists London rcpsych.ac.uk/usefulresources/publications/collegereports/cr/cr168.aspx Now updated / replaced by: Medical emergencies in eating disorders (MEED) also from the Royal College of Psychiatrists.

[xxii] anorexiafamily.com/bizarre-normal-eating-disorder-signs

[xxiii] anorexiafamily.com/pans-pandas-bge-inflammation-eating-disorder

[xxiv] In the UK, consult the Citizens Advice Bureau, which has an arm specialised in patients’ rights.

[xxv] In England parents of under-18s can self-refer to their closest specialist eating disorders service. Also, anywhere in the UK, a school nurse can refer to Child and Adolescent Mental Health Services, and of course you can also change your general practitioner (GP). If you have no confidence in any of your clinicians, you can ask them to refer you to one of the country’s specialist NHS units (more in Chapter 12).

[xxvi] Christopher Fairburn developed and validated adult and child forms of therapist-led interviews (EDE-I) and self-report questionnaires (EDE-Q) to assess the presence and degree of an eating disorder. You can see the adult questionnaire at https://www.corc.uk.net/outcome-experience-measures/eating-disorder-examination-questionnaire-ede-q/. The adult questionnaire and interview are also in the CBT-E therapists’ manual: Fairburn, C. G., Cognitive Behavior Therapy and Eating Disorders (https://amzn.to/2EkkMFU). The child version of the interview is named ChEDE-I.

Notice that there’s a lot about shape and weight, which some people with anorexia say is not relevant to them. This questionnaire would not have done much for the ‘holy anorexics’ of yesteryear.

[xxvii] anorexiafamily.com/workshops-eating-disorder

[xxviii] anorexiafamily.com/statistics-prevalence-incidence-how-common-eating-disorders-anorexia-bulimia

* Go to: Table of contents *

* Next: Chapter 4: Treatment – the essentials *